About the Author

Ellie Middleton is an activist, speaker and writer committed to breaking taboos, and to empowering neurodivergent people to thrive and their neurotypical peers to be more inclusive. She is the founder of the (un)masked community for neurodivergents and has run workshops at global corporations, including Google, Budweiser and McCann Worldgroup.

unmasked is her first book.

Ellie Middleton

UNMASKED

The Ultimate Guide to ADHD, Autism and Neurodivergence

Contents

Cover

About the Author

Title Page

Dedication

1. Introduction

2. The Basics

3. Translating Autistic Traits

4. Translating ADHD Traits

5. The Lost Generation

6. What Is Masking?

7. Self-diagnosis vs Medical Diagnosis

8. Ableism and Pretty Privilege

9. In the Workplace

10. Late Diagnosis and Mental Health

11. Conclusion

Acknowledgements

References and resources

Index

Copyright

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Cover

Frontmatter

Contents

Begin Reading

To Mum, Dad & Lew.

Thank you for always being my safe place. x

1

Introduction

I have always known that I was a bit different.

That might seem like a strange place to start, but it is, without a doubt, the thing that I have always known to be most true about myself.

Throughout my twenty-five years on this planet, my identity has changed over and over again. I have had hundreds of hobbies, heaps of hairstyles, dozens of different (attempted) friendship groups and a never-ending list of future goals. Nothing about me has ever been constant – apart from this deep-rooted knowledge of being different, somehow.

I knew that I was different at the age of three, when my nursery teacher would try to encourage me to play with the other children in my class, but I was much more interested in spending each day sitting in the exact same chair, on the exact same table, in the exact same room, doing the exact same activity of painting by numbers.

I knew that I was different at the age of seven, when I would lie awake in my groovy-chick-themed bedroom with thoughts racing around my head for hours on end and repeatedly tell my mum that I ‘just wished my brain would shut up’.

I knew that I was different at the age of ten, when it seemed as though the highlight of all the other children in my class’s day was ‘playtime’, but my biggest joy came from beating the school’s times-tables record speed (this would still be one of my proudest moments to this day, had my younger brother, Lewis, not beaten my record two years later).

I knew that I was different at the age of eleven, when everybody in my year at secondary school seemed to be forming solid friendship groups, but I was receiving online hate messages about how ‘annoying’ and ‘intense’ I was.

I knew that I was different at the age of thirteen, when I started having panic attacks and was given a ‘time-out’ card at school so that I could take myself out of lessons when things all got a bit too much.

I knew that I was different at the age of seventeen, when all my peers were accepting offers to go to university, but I was housebound, unable to speak, and debilitated by the impending change.

I knew that I was different throughout my early twenties, when I had this overwhelming sense that everybody seemed to be handling life so much better than I was, and I was constantly questioning whether they all felt like they were pretending to know ‘how to be a grown-up’, too.

I have always whirred through life at a hundred miles per hour – both internally, in my racing thoughts, and externally, as I looked for something to satisfy and stimulate me in whatever places I could find it. I have always felt as though I was in my own little bubble somehow, and I have never quite managed to fit in with the people around me – and because of this, being different is something that has always been firmly rooted in the beliefs I have held about myself. Up until very recently, though, I had never been given a reason why.

For twenty-four years, despite many trips to my GP, many conversations with my parents about never fitting in, and many Google searches about what could possibly be wrong with me, I was never given any answers. I was never told that anything was special or unusual about me, I had always excelled academically and so, as far as the adults in my life were concerned, I was just a gifted and talented child with what seemed like generalized anxiety disorder.

This left my self-worth crumbling. If, as far as everybody else is concerned, you are ‘fine’ or ‘normal’, but no matter how hard you try, you just can’t exist, achieve things, or look after yourself in the same way that everybody around you seems to be able to, then after a while it is inevitable that you will start to believe that you are broken, damaged, or just generally a bit of a shitty person.

I had dropped out of school, been unable to hold down a job, been left out of every friendship group I’d ever been a part of, and seemed to irk everybody around me. I’d undergone round after round of talking therapy, tried several different antidepressants, and read every self-help book I could get my hands on – but no matter what I did, I couldn’t seem to be able to get myself ‘right’.

I was totally convinced that life, for me, would be a case of surviving rather than thriving – but then, during the summer of my twenty-fourth year, after a conversation that happened purely out of luck, everything changed.

•

It was during the summer of 2021 and the England men’s football team had made it to the finals of the European Football Championships. I am a big fan of football, and so was my partner at the time. The finals were taking place on a Sunday evening in July, and we had made plans to watch the match at one of our favourite bars in Leeds. It was the first time in our lifetime that we would get to see England playing in a final, so my partner had managed to book the Monday morning off work, expecting the match to be followed by a long night of celebrations. I wasn’t able to book the day off, so I made the decision that if we won, I would stay out to celebrate and deal with the inevitable hangover the next day, but if we lost, I would leave to catch the last train home. I made my partner aware of my plans, and he responded by saying that he would do the same thing as me.

If I stayed out, he would too, and if I went home, he would catch the train with me.

A few hours later, after England lost on penalties (some things in life are, in fact, very predictable), I stood up from my bar stool, ready to catch the last train home as we had agreed.

‘Come on,’ I said, ‘we had better get going if we want to catch this train.’

‘I’m not getting it,’ said my partner. ‘I want to stay out and drown my sorrows.’

My response was: ‘But you said you would catch the train with me if we lost.’

‘Yeah, I know I did. But things change.’

After a few more frustrated words were shared, I headed off to catch the train alone and, a couple of days later, brought up the bicker in my next therapy session. The counsellor I was seeing at the time asked me what exactly it was about the interaction that had upset me.

Was it travelling home on my own late at night?

Was it feeling disappointed that he had chosen to stay out over spending the night with me?

Was it the feeling of what was supposed to be a very positive day ending on a sour note?

I responded by saying, no, it wasn’t any of those things – it was the fact that he had said he would do something and then didn’t do it. I have always taken words as fact – I live by the saying ‘say what you mean, and mean what you say’ – and so him saying something and not sticking to it felt very frustrating to me.

After a slight pause, the counsellor asked the question that has since gone on to change my entire life:

‘Has it ever been looked into why you take things so literally?’

My answer was: ‘No, it hasn’t, but I think I might know what you’re hinting at here …’

I knew literal thinking was commonly associated with autism … But autism was something I’d never associated with myself until this moment. So after the session, I went away and started googling things like:

‘Autism in women’

‘How to know if you’re autistic’

‘ADHD symptoms in adults’

‘Women with ADHD’

Staring back at me from my computer screen were lists of traits, experiences and descriptions that made me feel more seen than I had felt in my twenty-four years of life to that point. These lists explained a whole range of experiences, from my unexplained social struggles, to my impulsivity and inability to stick to the same thing, and from my constantly whirring busy brain, to my periods of overwhelm and anxiety. A whole range of other traits were there staring back at me, too, which we’ll dig into further later on in the book.

I’ve told this story many times since then, and I usually refer to this moment as my lightbulb moment. It really felt like, during everything before that moment, I was roaming around in a dark room – with no light guiding the way, no understanding of what was going on, and no answers to the thousands of questions I had asked myself about why I couldn’t just exist in the same way that everybody else around me seemed to be able to. Until then I had been stumbling around, walking into walls and knocking things over, as I tried to navigate life in the dark.

I’d spent twenty-four years asking questions like:

What is so wrong with me?

Why am I so weird?

Why can’t anybody see that I am a nice person?

Am I really as horrible as they say I am?

Why do I find things so difficult to understand?

How does everybody else know what to say and how to act?

Why am I so lazy?

Why does everybody always leave me?

Why am I so much more incompetent than anybody else?

Am I a terrible person?

Why can’t I just do things?

Why don’t they understand me when I am clearly saying what I mean?

Does everyone find it this hard to keep up with things?

Why am I so sensitive and dramatic?

What did I miss that everybody else seemed to take from that?

Why are they laughing at me?

Why can’t I just relax?

Will I ever make any friends?

They were all individual and separate questions (none of which I had ever found the answer to, and many of which I am sure so many of you reading this will relate to), and I had never really considered that they might all be linked somehow. Then suddenly, out of nowhere, I had been presented with what appeared to be the answer to all those questions. It felt as though someone had walked into that dark room, turned on the light, and allowed me to see what had been going on the whole time.

Don’t get me wrong – that doesn’t mean that the room was tidy or straightforward to deal with when the light was switched on. There was a huge pile of mess and trauma that I had never known was there and that needed to be dealt with – but at least I knew what I was dealing with, and I could begin to start the process. It was, for me, a paradigm shift – a new lens through which to see the world.

My lightbulb moment was followed by a long and complicated process to receive my own medical diagnosis, but after lots of advocating for myself, many appointments, and almost a year of waiting, I was diagnosed with both Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Condition at the age of twenty-four.

For me, these diagnoses came six months apart. I pushed for my ADHD diagnosis first, going private for this one as I was desperate for answers and to dig myself out of the rough patch I was going through, and I felt it had a more tangible outcome with the option of medication. Shortly after, I realized more and more that ADHD didn’t explain all my experiences, and that after medicating my ADHD and gradually starting to allow myself to be myself, more and more of the autistic traits I’d read about resonated with me, and so I managed to get an autism diagnostic assessment via the NHS Right to Choose scheme. Many people are both autistic and an ADHDer (like me!), but they don’t always come as a package. Both ADHD and autism are disabilities, and both are typically under-diagnosed in women, people marginalized for their gender, and other marginalized groups. Although this book is for everyone, it is my aim to shed more light on those under-represented experiences throughout the book, validating the struggles faced by multiply-marginalized neurodivergent people. The first stage of finding the answers you deserve is knowing what to look for – and I hope that by sharing what I’ve learned along my journey, I can help other people come to their own lightbulb moments, too.

These diagnoses have changed my life in every single way imaginable:

I am immeasurably happier.

I am much healthier.

I finally have answers.

I am learning who I really am.

I am working through the trauma of growing up undiagnosed.

I am beginning to unmask.

Unmasking, for me, is the biggest positive to come out of my diagnosis – hence the title of the book! After twenty-four years of squeezing myself behind a mask to ‘hide’ my autism and ADHD, and both consciously and subconsciously pretending to be the person I thought everybody else wanted me to be, I am finally learning to lift off the mask and find out who I really am underneath. We’ll dig into all this later on, too.

I’m no longer questioning if I’m a bad person – I just know that my brain is wired differently. I’m no longer forcing myself through overstimulating situations – I’m aware of my needs and learning to respect them. I’m no longer mad at myself for becoming exhausted so much sooner than everyone around me – I’m aware that my battery is a bit smaller than most people’s, and that’s okay. I’m finding ways to work with myself, rather than against myself – and, through this, I’m finding more productivity, success and happiness than I ever thought possible. I’m no longer morphing and moulding myself into the person I think my peers want me to be – I’m learning to unmask and live authentically as an autistic ADHDer.

Learning who I am – an autistic ADHDer – has been the most validating, freeing, and life-affirming realization. A realization that I wouldn’t change for the world. I’m not ashamed to be disabled – I’d go as far as saying I’m actually pretty proud of it. Being an autistic ADHDer defines the way that my brain works – it is what makes me, me. Through this new paradigm, after so many years of not knowing, I can finally see that ‘me’ is pretty great – and I hope that this book will help you to realize that you are pretty great, too!

All of us have different ways of thinking, working, doing and being – so even if you are an autistic ADHDer like me, you won’t experience things in exactly the same way that I do. This book is here to show you that there is no right way, no specific way, and no defined way of doing anything. We are all different, and we should celebrate that – because when we do, we all win.

My life post-diagnosis

My diagnoses haven’t only changed how I feel about myself personally, but they have changed my life professionally, too. The validation, acceptance and clarity this new understanding brought me was life-changing – but I still felt incredibly lonely. I didn’t know anybody in real life that I could relate to or share this new-found sense of self with. I felt astounded that I had only just been given the answer to questions I had been asking my whole life, incredibly grateful to have finally found them, and very aware that they had come to me purely out of luck.

I thought that there must have been thousands of other people out there, especially women and people marginalized for their gender, who were in the same boat – still waiting for their lightbulb moment to arrive. So, considering all of this, I started speaking online about my experiences of late diagnosis and very quickly built a very large audience. Although I felt nervous about sharing this new information about myself with the world, I mostly felt extremely grateful that I finally had some answers. I knew that I wanted to share those answers with as many people as possible, hoping that it could bring them the validation, understanding and self-acceptance I was beginning to feel. I’d been really lucky that all my family, friends, and the people around me had been super accepting of my new-found identity – they appreciated that I was still the same Ellie inside, just with a different understanding of myself now – and looking back I realize how privileged I was to have the safety, love and acceptance to be able to share my diagnoses so openly.

I started to share my story, thoughts and experiences and began to build a tribe of people who were feeling the same way. I discovered that there was a huge number of us who had slipped through the net – a lost generation who were never diagnosed as neurodivergent when we should have been, when we deserved to be, as children. This made me feel a whole range of ways: validated that other people were experiencing the same things that I was, comforted that I wasn’t alone, but also overwhelmed with all this new attention when I was still so early on in my own journey, and ill-prepared to deal with the sensitive and personal stories of so many strangers.

As I shared what I had been through, more and more people came to me with questions: about diagnosis, accessibility and what it means to be neurodivergent. No one had found anywhere they could ask these questions, and I became that place. My professional life is now a combination of writing, speaking and creating content about these topics, as well as running the (un)masked community in order to help other neurodivergent people find somewhere to feel connected, understood and validated. This community started online, but we now have regular in-person meet-ups and events in cities across the UK (and hopefully, one day, across the world!). I am super grateful for the work that I get to do each day, especially considering that, less than two years ago, I genuinely believed that I would struggle to ever survive in a job at all.

Through this work, and the more that I have started to come to terms with my diagnoses, I have realized that when you are diagnosed with a neurodivergent condition, whether that’s by a medical professional or by researching and self-diagnosing, there is no ‘handbook’ on what to do next. There are no guides, often no therapy, and often no support to turn to. After a medical diagnostic assessment, it’s usually a case of hearing the words, ‘Yes, you do, in fact, have xxx,’ and then leaving your assessment with little more than a cheery wave goodbye, a bucketful of questions and a mountain of unresolved trauma.

So the book ahead of you is my attempt at creating that handbook and righting that wrong. It’s somewhere that I can dive into my story, thoughts and learnings as a late-diagnosed neurodivergent woman a little deeper than I’ve been able to so far. It’s somewhere to add nuance to a very complicated conversation and somewhere that, I hope, will help you to feel seen, and help those around you to feel seen, too.

Having said that, in the spirit of being honest right from the get-go, I need to tell you right away that this book isn’t going to be a magic wand, a ‘cure’, or an answer to all your questions. First because, well, you don’t need to be cured – there is nothing wrong with you; you’re just different. But also because there is no quick fix, and things, unfortunately, are always going to be a little bit tricky for all of us. Living as a neurodivergent person in a neurotypical world isn’t always going to be smooth sailing, but I hope that, armed with the information and stories you’re about to read, you’ll at least find the journey slightly less bumpy.

The lightbulb moments that came with discovering the way that my brain works are the best things that have ever happened to me – and they can be for you, too. Learning to come into your own as a neurodivergent person is not an easy ride – because, as we all know, growth is never comfortable – but it is one that I believe (and I desperately hope, as someone going through it myself) is worth every ounce of effort. If you’re reading this as a neurotypical person to better support the neurodivergent people around you, thank you for taking the time to understand. Your kindness and compassion is of paramount importance in order to improve the safety and well-being of our community.

If you can learn how to work with your brain rather than against it, discover who you really are under the mask that you have learned to carry throughout your whole life, and work towards accepting and maybe even loving the real you, it really is possible to find a happiness that has always felt just out of reach. I say this because I know it’s true – I never thought that the level of joy, acceptance for myself and success (whatever that means) that I experience today was something that would ever be available to me, and yet here I am.

I hope this book can bring you even a fraction of the acceptance, validation and understanding that I have discovered over the last year – because you deserve it. You are sunshine in human form, and you are only just beginning to step into your light.

The best is yet to come – and I can’t wait for you to finally experience it.

We’re not damaged; we are disabled. We’re not broken; we’re different. We’re not bad people; we’re just misunderstood.

How to use this book

Before we get started, I want to let you know that this book is designed to help you, support you, and make you feel good. So I want you to remove any pressure you might be putting on yourself to read it all in one go, or in the ‘right’ order, or to absorb everything the first time around.

I’ve made sure that each chapter can stand alone, so that if you’re just looking for a particular something right now, you can jump straight to it, and it will still all make sense.

If you want to read the whole thing from start to finish? Fine.

If you want to read about one particular topic? Go ahead.

If it all feels a little bit overwhelming and you need to take things one page at a time? That’s absolutely okay too.

Rediscovering yourself comes with a whole load of positive emotions, like validation and acceptance, but it can be pretty overwhelming, too. This book is made to help you with that overwhelm, not to add to it – so please know that it is absolutely okay to take your time.

Having a whizzy ADHD brain can also make it hard to concentrate or absorb lots of information all in one go, so I’ve ensured that everything is bite-sized and digestible.

Each chapter will be made up of:

A clear and simple introduction that will tell you everything about what to expect over the following pages.

A couple of quotes for you to remember (feel free to rip these out and stick them somewhere in plain sight!).

A longer section with my thoughts, my experiences, and research on the topic.

Some tips and takeaways for you to consider or put into practice.

I’ve also recorded unmasked as an audiobook, so if it will help to listen along, there’s that option, too. (If you do choose to listen, I highly recommend cranking the speed up to 1.5× or 2× to help you concentrate. It’s one of the best tips I’ve learned since finding out about my ADHD brain.)

Take your time, go at your own pace, and remember that unmasking and rediscovering yourself is a journey – and it’s okay if your journey looks more like baby steps than big strides.

It’s also worth pointing out here that this book may be most helpful in supporting and explaining the experiences of those who have lower support needs, are verbal or speaking, and don’t have co-occurring learning disabilities. Autism is a spectrum, and all neurodivergences affect different people in different ways, so my experience absolutely isn’t representative of that of every neurodivergent person – and every person’s experience is equally valid and deserving of being heard. I’d like to point out right from the start that I honour the additional struggles of those with higher support needs, including non-speaking autistic people and those with learning disabilities. My Whiteness, gender and socio-economic status also hugely impact the way that I am able to navigate the world as a neurodivergent person, so those who don’t hold the same privilege and are marginalized by different systems of oppression will have different experiences to mine, and I have shared quotes and stories from multiply-marginalized people later in the book in an attempt to highlight this. I urge you not to use this book as your entire education on neurodivergence, but to seek out the voices and experiences of people from across the whole spectrum and with a whole range of intersecting identities. Support and learn from their work in the same way that you have supported and learned from mine.

2

The Basics

Before we get started, let’s dig into the basics of what autism and ADHD actually are – because even the simple stuff is so often misunderstood or miscommunicated, and, as a society, our understanding of both ADHD and autism, and neurodivergence as a whole, is very limited.

Right from the get-go, I’d like to point out that this chapter was tricky for me to write and required me to do a lot of reframing of the language typically used. Like many of the neurodivergent community, I believe in the neurodiversity model of understanding differences, as opposed to the medical model; this essentially means that I believe ADHD and autism make me different rather than less. At the same time, I recognize them to be disabilities, which means that, objectively, a lot of things are trickier for me than they are for non-disabled people. It’s a very grey area, and, as you’ll see, most of the diagnostic criteria and information that is currently available doesn’t fully align with this neurodiversity model – hence the need for this book!

Having different models for explaining the neurodivergence means that the language used, especially in the criteria used to diagnose people, doesn’t always align with the preferences or most common experiences among neurodivergent people. I have tried to reframe and explain where I can, but there may be some sections where, taken out of context or without the space for nuance, I haven’t got it exactly right for everyone. What I’m trying to say here is this: the conversations around autism, ADHD, and neurodivergence as a whole are very nuanced – and also ever-changing. I have tried my best to make everything as clear as I can and to use language that is most aligned with what I believe to be true, but there might be times when I either haven’t made it clear enough, haven’t got it exactly right, or when the language or beliefs about things have changed between the time of me writing and the time of you reading. That goes to say – please, be nice! We’re all on a journey – collectively and individually – and that means we all (myself very much included!) still have room to learn.

In this chapter, we’ll explore:

The neurodivergent umbrella – including ADHD, autism, spiky profiles and co-occurrences.

Autism – including the diagnostic criteria, some of the changes in terminology and how we can better support autistic people.

ADHD – including the diagnostic criteria and some of the ways that ADHDers can be supported.

Being neurodivergent makes me different – not less.

A lot of the things we’ve been told are deficits are actually just differences. We’re not lacking; we just do things a little differently.

The neurodivergent umbrella

In short, ADHD and autism are two types of neurodivergence. The language we use to describe them is always changing, but, at the time of writing, they’re often referred to as neurodevelopmental conditions – although some members of the community feel the word ‘condition’ feels too medical and would like to see it replaced with ‘differences’.

Neurodiversity is a term, first coined by Judy Singer in her 1998 thesis,1 that refers to the natural diversity of human minds. All of us have different brains that work in different ways, and neurodiversity refers to all of the unique and differing ways in which people can exist, think, process, feel and act. Within that, there are neurotypical people, whose functioning falls within societal standards and norms, and neurodivergent people, whose functioning falls outside of those norms.

Neurodivergent, a term first coined by Kassiane Asasumasu in 2000,2 is an umbrella term which includes innate and genetic conditions (including ADHD and autism), as well as acquired or developed conditions.

I find it super interesting to think that both of these terms were first coined just over twenty years ago – within my lifetime, and most likely within your lifetime! – which helps to explain (but doesn’t excuse) why change is only just starting to happen over recent years.

A non-exhaustive list of conditions that fall under the neurodivergent umbrella:

ADHD (Attention Deficit Hyperactivity Disorder)

Autism

Dyslexia

Dyspraxia

Dyscalculia

Tourette’s

BPD (Borderline Personality Disorder)

OCD (Obsessive Compulsive Disorder)

Tic Disorders

Epilepsy

Bipolar

Acquired/Traumatic Brain Injury

Although I centre ADHD and autism throughout this book, as those are the neurodivergences that I have lived experience of, it’s important to remember that there is a whole range of ways that somebody can be neurodivergent. That being said, the general advice I share in this book and more widely about feeling understood and validated is true for anyone who falls, or suspects that they might fall, under the neurodivergent umbrella.

I would highly recommend checking out the amazing Sonny Jane Wise (they/them),3 also known as @livedexperienceeducator across social media, who has been monumental in my own education around neurodivergence – as well as that of thousands of others.

I asked Sonny what the main thing they would like people to understand about neurodivergence is, and they shared the following – which has done a perfect job of summing it up in a much more clear and more concise way than I’d have been able to!

Neurodivergent refers to anyone who functions in a way that diverges from dominant societal norms, standards and expectations. If you think differently, learn differently, communicate differently, feel differently, behave differently, process information differently or function differently, you are neurodivergent. It doesn’t matter how you came to diverge; it matters that you do diverge – and there are so many ways people can diverge.

It’s important to point out here (as, again, there are lots of misuses of language dotted around the internet) that a person themselves cannot be neurodiverse – they can be neurotypical or neurodivergent. Neurodiversity refers to the variety of minds within the human population, so one singular person can’t be neurodiverse.

•

ADHD and autism are both disabilities. Some autistic people or ADHDers choose not to identify with the term ‘disabled’, but my personal opinion is that a lot of this comes from the stigma associated with the label and the internalized ableism that many of us struggle with. As a society, we need to understand that being disabled isn’t a bad thing – it is just a neutral term and an objective fact – but until that happens, some neurodivergent people may choose not to identify as disabled.

Neither autism nor ADHD are mental illnesses or mental health conditions, although there is lots of misinformation online that categorizes especially ADHD in that way. Living as an autistic or ADHD person in a neurotypical world can, however, definitely affect somebody’s mental health, and many neurodivergent people do have co-occurring mental health conditions (as we’ll explore in Chapter 10: Late Diagnosis and Mental Health), but it’s important to note that autism and ADHD themselves are not mental health conditions.

Generally, across the neurodivergent community and disabled community alike, most people prefer to use identity-first language rather than person-first language. For example, I would say that I am an autistic person, not a ‘person with autism’. This is because autism isn’t an addition or a side-piece of who I am; it is an integral part of my identity. This is quite tricky to do with ADHD (just because of the way that the language and terminology we currently use have evolved), so I tend to refer to myself (and you’ll see me using this term throughout the rest of the book) as an ADHDer (or overall, an autistic ADHDer). Some people also like to use the term AuDHDer if they’re both autistic and an ADHDer.

You will also find the word ‘allistic’ throughout the book, which is the term used for someone who isn’t autistic. In the same way that a person can be either neurotypical or neurodivergent, they can be either autistic or allistic.

Spiky profiles and co-occurrence

No two brains are the same, and this also means that it’s usually not as straightforward as one condition or diagnosis that can fully explain someone’s experience. Often, people have multiple co-occurring neurodivergences; studies have shown that 50–70% of autistic individuals also have co-occurring ADHD, and that 20–50% of people with ADHD are also autistic. This makes it even trickier to diagnose, support and understand each person’s unique set of traits and experiences because there are often overlapping or contradictory things going on. For example, as an autistic ADHDer, I like to maintain routine and structure thanks to my autism, but my ADHD makes it tricky to stick to a routine because it likes spontaneity and finds doing the same thing every day boring.

This idea of unique combinations of experiences and traits is also explained as neurodivergent people having a ‘spiky profile’4 – exhibiting significant variations in their strengths and weaknesses across different areas of their experience. Instead of having a uniformly distributed set of skills and abilities, neurodivergent people (and everyone!) can really excel in certain areas, while simultaneously facing challenges or difficulties in others. If you picture these strengths and struggles plotted on a graph, you would have peaks (or spikes) representing areas of exceptional ability and valleys representing areas of relative weakness – hence the name ‘spiky profile’ (and nothing to do with being grumpy!).

For example, an autistic person might have exceptional attention to detail, really strong memory skills, and a high level of focus in their specific special interests – but they may simultaneously struggle with social interactions, sensory sensitivities, or executive functioning tasks like memory or inhibition (more on these in Chapter 3: Translating Autistic Traits). Thinking of these differences as a spiky profile celebrates each person’s strengths while validating and understanding their struggles. It challenges the notion of there being a singular measure of intelligence, ability, or worth (think of that old saying about judging a fish on its ability to climb a tree!) and encourages us to recognize and value each person as an individual with unique strengths and struggles.

Autism

Each of you reading this will be coming to this section with your own understanding of and preconceptions about autism – whether you are autistic or not, or know someone who is or not. We all think of autism differently because it shows up in all sorts of ways. If we also take into account the fact that everyone has different neurodivergences and personality traits, we can see that there really is no singular way of describing autism or of being autistic. You might think being autistic mainly affects our ability to socialize, or makes us incredibly good at maths – and those things might be true for some, but not at all for others. Of course there are ways of defining it medically, which I will explain now, but I think it’s important to remember that, first and foremost, no two autistic people are the same. A popular saying among the autistic community explains this well: ‘If you’ve met one autistic person, you’ve met one autistic person.’

The diagnostic criteria

Later in this book, specifically Chapter 7: Self-diagnosis vs Medical Diagnosis, I will discuss whether or not an autistic person might want to get a medical diagnosis, as well as some of the problems with the criteria used in assessing for that diagnosis, but for the purpose of explaining how autism is defined for this opening chapter, I will explain the current diagnostic criteria. According to the National Autistic Society, autism is a ‘lifelong developmental disability which affects how people communicate and interact with the world’.5 It is a spectrum condition, which means that different people will experience a range of different traits in a range of different ways, but more on the use of the word ‘spectrum’ later. Genetic factors are estimated to contribute 40–80% of the chance of being autistic, and you’re more likely to be autistic if your family has a history of it.

To meet the diagnostic criteria for Autism Spectrum Condition under the DSM-56 (Diagnostic and Statistical Manual of Mental Disorder – the most common guide currently used by medical professionals), someone must have ‘persistent deficits’ in each of three areas of social communication and interaction, as well as at least two out of four types of restricted, repetitive behaviours.

It’s important to note that most people in the autistic community prefer to call them differences rather than deficits – we’re not lacking; we’re just different! – but I have used deficits throughout the diagnostic criteria as that is how they are currently written. The use of the word ‘persistent’ is important to highlight, too – the deficits (or differences) must have been present throughout someone’s life for Autism Spectrum Condition to be diagnosed.

Social communication and interaction – all three of these criteria must be met for a formal medical diagnosis:

1. Deficits in social-emotional reciprocity
– struggling with the back-and-forth nature of neurotypical conversations, e.g.:

• Answering questions with a short, blunt answer

• Monologuing or infodumping about special interests

• Struggling to initiate conversation with other people

• Interrupting other people during conversations

2. Deficits in non-verbal communicative behaviours used for social interaction
– Struggling to understand and use non-verbal communication such as gestures, facial expressions and eye contact, according to neurotypical norms, e.g.:

• Completely lacking in facial expressions or making ones that don’t fit with the situation

• Mimicking the body language of others

• Either avoiding eye contact completely or having very intense eye contact

• Struggling to understand the facial expressions or body language of others

3. Deficits in developing, maintaining, and understanding relationships
– struggling to make, keep or understand relationships with neurotypical people or according to neurotypical norms, e.g.:

• Struggling to adjust behaviour to suit different social contexts

• Struggling to know how to make friends

• Finding it hard to maintain friendships once you’ve made them

• Lacking interest in the people around you

Restricted, repetitive patterns of behaviour, interests, or activities – two out of four of these criteria must be met:

1. Stereotyped or repetitive motor movements, use of objects, or speech
– repeating words or movements, or repetitive use of objects, often referred to as stimming, e.g.:

• Repeating words or phrases after somebody else has said them

• Repeated movements such as flappy hands, picking nails, rocking backwards and forwards on feet

• Lining up objects in a particular order

2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or non-verbal behaviour
– having strict routines and rituals or struggling with change, e.g.:

• Eating the same foods every day

• Taking the same routes or following the same routines

• Struggling with change more than other people do

• Using scripts when greeting or interacting with people

3. Highly restricted, fixated interests that are abnormal in intensity or focus
– more commonly known as ‘special interests’, e.g.:

• Spending lots of time researching or engaging with your special interest

• Wanting to talk about your special interest a lot

• Getting so absorbed in your special interest that you forget to eat, drink or take care of yourself

4. Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment
– being over- or under-sensitive to sensory inputs, e.g.:

• Struggling with bright lights or loud noises

• Seeking out crunchy textures in food

• Having a very high pain threshold

• Having a limited diet because you struggle with different tastes and textures

As you can see, the diagnostic criteria covers a whole range of experiences. It’s important to point out that not every single part of the criteria has to be met to meet the threshold for a diagnosis – so if there are a couple of traits that you don’t relate to, that doesn’t make you any ‘less autistic’. (It also might be that you have masked certain traits, or that they show up in less obvious and/or stereotypical ways for you, as we’ll explore in Chapter 5: The Lost Generation).

Changes in terminology

Asperger Syndrome

In the past, Autism Spectrum Condition was split up into different diagnoses depending on the individual’s support needs. The most commonly known of these is Asperger Syndrome, which was diagnosed up until 2013. First described by Hans Asperger in 1944, Asperger Syndrome first appeared in the DSM-4 (the edition before the one that is currently used) in 1994, before being removed again in the DSM-5 in 2013. Therefore, some people who were diagnosed between those years may still use the label of Asperger Syndrome (also known as Asperger’s, and people may refer to themselves as ‘Aspies’) – as that is the diagnosis a medical professional gave them at the time.

However, Asperger’s is no longer a diagnosis that is given and is a term that is avoided by most of the autistic community. This is because links have been made between Hans Asperger and the Nazi regime, and it is generally understood that Asperger Syndrome was coined as part of the eugenics programme. Those who were labelled as having Asperger’s7 rather than autism were characterized by: ‘social isolation and lack of reciprocity in social interactions; normal or precocious language acquisition, with above-average linguistic skills but subtle abnormalities of verbal and non-verbal communication’. Essentially, it was used to describe an autistic person with a higher IQ and a higher level of language skills – things that were deemed more ‘desirable’ to the Nazi regime. It is now understood that this label was used to distinguish between those with higher support needs and fewer ‘desirable’ traits, and those with lower support needs and more ‘desirable’ traits. As a result, those diagnosed with Asperger Syndrome rather than autism were spared from the horrific fate that met many disabled people during that time. As we all know, somebody’s worth does not depend on their support needs – and each person’s support needs may change from day to day and depending on circumstances – and so for this reason and its harmful past, the term Asperger Syndrome is no longer used.

Functioning labels

In the past, autistic people were also frequently assigned functioning labels – they were described as either ‘high-functioning’ or ‘low-functioning’ – but these terms are no longer used or supported by the community, despite still being used among the wider population. In fact, when I went through my own diagnostic assessment of Autism Spectrum Condition in 2022, the psychiatrist confirmed that I was autistic and then added that I was ‘very high-functioning thanks to my high intelligence’, which was very concerning to hear from a medical professional. Functioning labels are no longer used for a few reasons:

1. ‘Functioning’, when used in this way, essentially describes someone’s ability to perform to an acceptable standard within the parameters of a capitalist society. When someone says that I am ‘high-functioning’, they really mean that I can hold down a job, live on my own, look after myself and make my own money. Someone’s worth or ability should not be tied solely to their ability to make money.

2. Functioning labels are very minimizing and don’t take into account what goes on behind the scenes. For example, somebody might think a person is ‘high-functioning’ thanks to their ability to work a 9–5 job, but what they don’t see is that person going home absolutely drained at the end of the day and struggling to feed, bathe, or take care of themselves. Just because someone’s struggles are hidden behind the scenes doesn’t mean that they don’t exist.

3. Someone’s ability to ‘function’ can change from day to day. For example, I become less able to manage in times of change or uncertainty. When I was due to make the transition from high school to university, the looming change meant that I became too anxious and overwhelmed to go to school and had to drop out, even though, in the years up until that point, attending school had been within my capabilities.

4. Someone’s ability to ‘function’ is very much tied to their ability to mask (more on this in Chapter 6: What Is Masking?). I am seen as ‘high-functioning’ because I can travel on my own – but this doesn’t take into account that I would need to mask heavily, which is extremely tiring and detrimental to my mental health.

As we have learned to understand each of these nuances more over time, the autistic community now advocate for and refer to the fact that people have ‘higher support needs’ or ‘lower support needs’, and we highlight that these needs can change from day to day, over the course of somebody’s life, or depending on circumstances.

The autistic spectrum

The autistic spectrum is probably a term you are already familiar with. Still, many assumptions come with this term which can be harmful, so it’s essential that we all understand what it really means and how to refer to it. As mentioned above, autism is a spectrum condition, meaning each autistic person has differing needs and experiences. The critical misconception I would like to point out is that the spectrum is not linear. It doesn’t go from ‘not very autistic’ to ‘really autistic’; it is a web of different traits and experiences that might affect people in a greater or lesser way.

As of now, society generally thinks that the autistic spectrum looks like this:

When, in reality, it looks more like this:

Some people argue that we need a more clearly defined way to distinguish between those within the autistic spectrum,8 for example:

Those who are non-verbal or non-speaking versus those who are speaking.

Those with a higher IQ versus those with intellectual difficulties.

Similarly, it is argued that we cannot compare an autistic person with 24/7 support needs to someone who is generally able to take care of themselves but has sensory and social struggles, and that we need a term that more clearly differentiates these needs in order to give credit to the additional challenges and barriers that those with higher support needs face. But, as of now, it is understood that autism is a spectrum and that each person within that spectrum has varying support needs, challenges and strengths.

It is also a common misnomer for people to refer to autistic people (or, more commonly, those who aren’t actually autistic but just have some differences or quirks that are stereotyped as being autistically coded) as being ‘on the spectrum’. I think people are usually well-meaning when they use this term (if not using it in a slightly throw-away way) but I personally find it quite minimizing. In the same way that we use identity-first language (autistic person rather than ‘person with autism’) because autism isn’t separate to who we are, it’s important that we don’t refer to people as being ‘on the spectrum’. This is because autism is an integral part of our identity; we are not just ‘on’ the spectrum, it is within us.

What we can do to support autistic people

There is no specific medication for autism, although autistic people with co-occurring mental health conditions (which are very common; studies have suggested 85% of autistic children also have some form of co-occurring psychiatric diagnosis)9 might take antidepressants or other similar medication, as we’ll discuss further in Chapter 7: Self-diagnosis vs Medical Diagnosis. Aside from this, autistic people might benefit from talking therapies to work through the challenges that come with being autistic in a neurotypical world – but it’s important that a therapist has an understanding of autism and uses neurodiversity-affirming and lived-experience-informed practice to take into account the unique experiences of autistic people.

ADHD

Just like with autism, you will probably come to this section with all sorts of assumptions about what ADHD is made up of. Concerningly, when I was looking for a succinct definition of ADHD, I found that ADHD UK, a leading ADHD charity, introduces ADHD as ‘a mental health condition that is defined through analysis of behaviour’,10 which, as we’ve discussed above, isn’t correct; ADHD is not a mental health condition. The NHS describes it as ‘a condition that affects people’s behaviour’, which, I feel, doesn’t do justice to the extent of its effects on somebody’s life either. Up until now, ADHD has been explained from an outsider’s perspective rather than in terms of the experience of the ADHDer themselves; if I were to describe it as succinctly as possible myself, I would say that it is a neurodevelopmental difference, mainly affecting executive functioning skills, which changes the way that somebody thinks, feels, processes and behaves.

The diagnostic criteria

ADHD stands for Attention Deficit Hyperactivity Disorder, which, surprise surprise, isn’t actually very accurate in describing what it consists of. ADHD isn’t a deficit of attention; it’s a difference in the way that the brain regulates attention – meaning that sometimes we struggle to focus, and sometimes we are very focused, also known as hyperfocused. Not everyone with ADHD experiences hyperactivity, either, so it’s actually not a very clear term, and is arguably what has led to society’s lack of understanding about it.

Studies have shown that there are structural differences in the brain between ADHDers11 and non-ADHDers. Although there is no clear ‘cause’ of ADHD, it is said to be highly heritable (meaning genetically transmissible between parent and child), with an estimated 77–88% genetic contribution.12 However, although you are more likely to inherit ADHD if one of your parents is an ADHDer, that isn’t guaranteed – and you can also be born with it even if your parents are neurotypical.

Executive functioning skills, as described by Harvard University, are ‘the mental processes that enable us to plan, focus attention, remember instructions, and juggle multiple tasks successfully’. In the same way that an air traffic control system at a busy airport safely manages the arrival and departure of many aircraft across multiple runways, the brain needs our executive functions to filter distractions, prioritize tasks, set and achieve goals, and control our impulses. The eight executive functions are:

1. Working memory
– the ability to hold and manipulate information for short-term use.

2. Self-monitoring
– the ability to observe and evaluate your own thoughts, behaviours, and actions.

3. Inhibition/impulse control
– the ability to resist impulsive urges and hold back from inappropriate or disruptive behaviours.

4. Emotional regulation
– the ability to recognize, understand, and effectively manage your emotions and reactions to different situations.

5. Flexibility
– the ability to adapt and adjust to changing circumstances, perspectives, or demands.

6. Planning and prioritization
– the ability to create a systematic approach to achieving goals, including breaking tasks into steps and determining their relative importance.

7. Task initiation
– the ability to independently begin a task or activity without procrastination or hesitation.

8. Organization
– the ability to structure and arrange information, materials, or physical spaces.

One of the main ways that ADHD affects somebody is in these executive functioning skills. Studies indicate that people with ADHD have approximately a 30% delay in the development of their executive functions,13 and that adults with ADHD tend to only develop approximately 75–80% of the executive functioning capability of their peers14 (which is usually fully developed by age thirty), which means that ADHDers generally have difficulties with or differences in all the above skills. On top of this, it is generally understood that people with ADHD struggle with regulating dopamine – the neurotransmitter responsible for stimulating us. People with ADHD have at least one defective gene, the DRD2 gene,15 that makes it difficult for neurons to respond to dopamine. The research in this area is very limited, but it is suggested that we are often either lacking in dopamine (which means we will struggle to concentrate and look for that dopamine hit/stimulation elsewhere), or we have too much dopamine (which means we become hyperfocused on one specific task and forget that the rest of the world exists). This is what is really going on when an ADHDer is either unable to focus at all, or unable to stop doing what they’re doing!

There are three types of ADHD that all come under the ADHD umbrella – inattentive type, hyperactive type and combined type, which can briefly be described as:

Inattentive ADHD: difficulties with sustained attention, organization, and executive functioning, often leading to trouble with focusing, staying on task, and completing activities.

Hyperactive ADHD: hyperactivity, impulsivity, and excessive physical restlessness, often leading to difficulty in staying still, engaging in impulsive behaviours, and interrupting others.

Combined type ADHD: combines traits of both inattentive and hyperactive types.

The most common form of ADHD is now known to be the combined type,16 with more than two-thirds to three-quarters of ADHDers diagnosed as this type at some time in their life. Stereotypically, it has previously been suggested that ‘inattentive ADHD is more common in women than in boys and men, who tend to lean towards the hyperactive and impulsive symptoms’. It is thought that males are more likely to display ‘external’ symptoms such as fidgeting and hyperactivity, whereas a lot of hyperactivity in those assigned female at birth may be mental or internal. In reality, we know that it is a lot more complicated than this, and that the differences in presentation most likely come from the differences in how those assigned female at birth (AFAB) and those assigned male at birth (AMAB) are socialized, for example, that it is more accepted for boys to be boisterous, while girls are commonly praised for being calm and quiet.

ADHD, like autism, is most commonly diagnosed using the DSM-5, and the conditions for diagnosis are that17 somebody must ‘show a persistent pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development’. The diagnostic criteria refer to ‘symptoms’ of ADHD, but in a world where we are moving away from the medical model, a lot of the community prefer to use the word ‘traits’ (more on traits in the following two chapters).

Inattentive type ADHD

To be medically diagnosed with inattentive type ADHD according to the DSM-5, somebody must show six or more symptoms of inattention for children up to age 16 years, or five or more for adolescents age 17 years and older and adults. The symptoms of inattention must have been present for at least six months, and be ‘inappropriate for developmental level’.

Inattention traits:

Often fails to give close attention to details or makes careless mistakes in schoolwork, at work, or with other activities.

Often has trouble holding attention on tasks or play activities.

Often does not seem to listen when spoken to directly.

Often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace (e.g. loses focus, side-tracked).

Often has trouble organizing tasks and activities.

Often avoids, dislikes, or is reluctant to do tasks that require mental effort over a long period of time (such as schoolwork or homework).

Often loses things necessary for tasks and activities (e.g. school materials, pencils, books, tools, wallets, keys, paperwork, eyeglasses, mobile telephones).

Is often easily distracted.

Is often forgetful in daily activities.

Hyperactive type ADHD

To be diagnosed with hyperactive type ADHD, similarly, somebody must show six or more symptoms of hyperactivity-impulsivity for children up to age 16 years, or five or more for adolescents age 17 years and older and adults. The symptoms of hyperactivity-impulsivity must have been present for at least six months to an extent that is disruptive and inappropriate for the person’s developmental level.

Hyperactivity traits:

Often fidgets with or taps hands or feet, or squirms in seat.

Often leaves seat in situations when remaining seated is expected.

Often runs about or climbs in situations where it is not appropriate (adolescents or adults may be limited to feeling restless).

Often unable to play or take part in leisure activities quietly.

Is often ‘on the go’, acting as if ‘driven by a motor’.

Often talks excessively.

Often blurts out an answer before a question has been completed.

Often has trouble waiting their turn.

Often interrupts or intrudes on others (e.g. butts into conversations or games).

Combined type ADHD

For a diagnosis of combined type ADHD (this one is me!), the criteria must be met for both inattention and hyperactivity traits (six or more traits of inattention and six or more traits of hyperactivity-impulsivity for those under 17 years old, or five or more traits of inattention and five or more traits of hyperactivity-impulsivity for those over 17 years old).

In addition, for any diagnosis of ADHD to be made, the following conditions must be met:

Several inattentive or hyperactive-impulsive symptoms were present before age twelve years.

Several symptoms are present in two or more settings (such as at home, school or work; with friends or relatives; in other activities).

There is clear evidence that the symptoms interfere with, or reduce the quality of, social, school, or work functioning.

The symptoms are not better explained by another mental health condition (such as a mood disorder, anxiety disorder, dissociative disorder, or a personality disorder).

How we can support ADHDers

With ADHD, it’s crucial that we reframe ‘deficits’ or ‘faults’ as differences – for example, reframing ‘executive dysfunction’ as executive functioning differences. ADHDers (whether hyperactive, inattentive or combined type) are often prescribed either stimulant or non-stimulant medications. However, this is a personal choice and doesn’t work for everybody – we’ll discuss this more in Chapter 7: Self-diagnosis vs Medical Diagnosis. They can also really benefit from ADHD coaching, which can help to reframe ways of working, teach coping strategies and develop executive functioning skills.

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Recap

Overall, as you can see, autism and ADHD cover a whole range of experiences and show up in a whole range of different ways, and they are just two examples of neurodivergence!

In this chapter, we have explored:

The neurodivergent umbrella and some of the neurodivergences that come under it.

What ADHD and autism actually are.

The diagnostic criteria for autism, some of the changes in how we describe it and how we can better support autistic people.

The diagnostic criteria for ADHD and some of the ways that ADHDers can be supported.

Your takeaway box

Language is key

The way in which we use language to describe autism, ADHD, neurodiversity and neurodivergence is super important. Remember that neurodiversity involves all people and refers to the differences in the way in which we all think, process, feel and behave, and that an individual person can be either neurotypical or neurodivergent. We also tend to use identity-first language when referring to disabled people; for example, I would refer to myself as an autistic ADHDer rather than a ‘person with autism and ADHD’. Be mindful of the language you use, and try your best to be as accurate as possible, as often as possible.

Remember the umbrella

Remember that autism and ADHD are just two of the neurodivergences that fall under the neurodivergent umbrella and that, while they are the main focus of this book, it’s important to highlight that there are so many people outside of autistic people and ADHDers who are neurodivergent, too. Seek out those voices, and pay those people just as much attention as you’re paying to this book. To be a truly educated and inclusive society, we need to consider and accept all types of neurodivergence.

Differences not deficits

It is essential that we learn to reframe deficits as differences and aim to be neurodiversity-affirming in everything we do. We need to remember that different does not equal less, that each person has a unique set of needs, experiences and preferences, and that there is no such thing as one ‘normal’ or ‘right’ way to be, exist, or do things.

3

Translating Autistic Traits

When it comes to society’s understanding of ADHD and autism, I often feel as though we are in a sort of purgatory state: although the awareness of neurodivergence has increased hugely over the past few years, and although more conversations are starting to happen and more people are finally gaining access to a diagnosis, the actual understanding of what ADHD and autism entail is still very minimal. Most of society still has a limited understanding of who might have these conditions, which we will discuss further in Chapter 5: The Lost Generation, but it also shows up as a fundamental lack of understanding of how neurodivergent traits affect someone’s life, alter their communication styles and require accommodating.

In this chapter, we’ll dig into:

The key traits of autism.

How they might show up in somebody’s life.

How and why this differs from what people might expect.

What society can do to accommodate these experiences.

In a world that isn’t always the kindest to autistic people, special interests provide a safe place where we can unmask, be ourselves, not worry about ‘getting things wrong’, and feel real, true, autistic joy.

You are not a bad person; you are just autistic – which means that you might think, behave, communicate or do things slightly differently.

The key traits of autism

As I write this in 2023, it seems as though society is starting to gain more of a basic knowledge of autistic traits in a theoretical sense; more people are getting diagnosed as autistic, there is a (slowly) increasing focus on autism in the media, and more people are aware of things like ‘literal thinking’ and ‘autistic pattern recognition’.

However, I have noticed that even though people might be starting to understand these traits better ‘on paper’, they have not been given any explanation or translation as to how these traits actually show up in real life, which means that it’s tricky for them to understand or accommodate the autistic experience properly. Although you might have heard of some of the traits that came up in the diagnostic criteria in Chapter 2: The Basics or might think you have a good understanding of autism, the likelihood is that there are things in this chapter that you won’t know (regardless of whether you are autistic, or otherwise neurodivergent, or not), just like I didn’t when I was first diagnosed.

As an example of this, let’s use one of the autistic traits that most people seem to be familiar with: taking things literally.1 If you were to do a quick Google search of autism, literal thinking would be one of the most commonly acknowledged traits that you would find. On the NHS website, it is listed as below:

Taking things very literally – for example, you may not understand sarcasm or phrases like ‘break a leg’.

This explanation is a good representation of what most people seem to consider ‘taking things literally’ to mean. People generally think it means that we struggle with sarcasm, that we don’t understand jokes, and that we are very gullible – and, importantly, they think that that is the extent of what literal thinking means. These things can all be true – although, personally, through masking, I have definitely learned to be able to sense sarcasm and when someone is joking – but there are also so many other aspects of literal thinking that affect the way that I think, work, communicate and interact with others. For me, taking things literally means exactly that: that words, for me, are understood in a very literal sense. It means that if somebody tells me something, I will believe it to be true – and similarly if they don’t tell me something, I won’t know it to be true or assume it myself.

As an example, I mentioned the story of how I came to discover my autism in the introduction to this book, where I had taken my partner’s agreement to come home with me after the football match very literally. His words were, ‘If England lose, I will come home with you,’ so my brain had taken that as a promise and a definitive course of action. Similarly, one of my favourite stories from my childhood is that my parents quickly learned that they couldn’t say the word ‘McDonald’s’ out loud, because if they even mentioned in passing that we ‘might be able to get a Happy Meal on the way home’, I would hold them accountable to every word. For me, if somebody had said, ‘If you’re good, we might be able to get a McDonald’s afterwards,’ and I believed that I had been good, the only possible outcome that I could fathom would be that I would then be allowed my Mcdonald’s! (Do not deprive this girl of her McNuggets!) ‘But you said’ quickly became one of my infamous catchphrases – and still is to this day. If someone says something to me, I consider it fact, even if it was just meant as an option, a suggestion, or a passing comment. This is still the case for me today – even though I’m now aware that this is one of my autistic traits!

Literal thinking also means that autistic people can struggle to understand instructions unless they are given in a very black-and-white, literal way. This is true of me too. If instructions aren’t clear, concise and specific, then I spend too long trying to compute each word’s meaning and can’t add them together to work out what the person actually wants me to do. Now that I know how my brain works, I ask that all instructions are given to me in the framework of ‘What by When and Why’:

What exactly do you need from me?

When exactly do you need each of those things by?

Why do you need each of those things?

This way, I know that the instructions given to me will be properly computed by my literal brain, rather than it trying to take fluffy instructions literally when they weren’t designed that way.

As an example, in the workplace, somebody might show you a document and give you the following instruction:

‘Please can you read through this document, and we’ll touch base to catch up on your thoughts.’

In this scenario, my brain would be asking a whole load of questions:

What do you want me to do? Am I supposed to read through and make notes? Annotate the document? Edit it with my suggestions? Prepare a report or some slides of my findings?

What does ‘touch base’ mean? Should I send you an email? Are we having a meeting? If so, will there be other people there? Do I need to have anything prepared?

When are we touching base? Should I do this now or after the thing I’m working on now? How important is this, and where should it fall within my list of priorities?

Whereas if the instruction was given using the What by When and Why framework, many of these questions would be answered:

What exactly do you need from me: Please could you read through this document and annotate it with comments stating any edits you would suggest. Once you have done that, please will you email me your edits.

When exactly do you need each of those things by: It is relatively important that this gets done today, but please finish the task you are working on first. If it is possible, taking into account the workload you already have on your plate, it would be great if you could email me the suggestions by 5pm today.

Why exactly do you need me to do this: The document is being sent to a client tomorrow as part of XYZ project, and we would like your input to ensure there isn’t something that we have missed.

On the flip side of this, literal thinking also means that I will only take the meaning from the words that you say, and won’t know to look for any unspoken meaning, hinted messages or assumed knowledge. If, for example, you were to ask me, ‘Ellie, can you help me with this project?’ I would consider the words of the question, and if I physically and literally had the capability to help you, my answer would be yes. What I would fail to understand or think about would be the unspoken context that you had probably intended to come along with the question:

Do you have the capacity to help me with this project without becoming overwhelmed?

Do you have the time to help me with this project, or is there something more urgent you need to be doing?

Do you have the time to help me with this project within your working hours?

Would you feel comfortable helping me with this project?

Although these additional questions, in neurotypical conversation, might be ‘a given’ when making a request, as somebody who understands words and sentences in their most literal sense they don’t come into my mind, and they aren’t considered when I give my response. This will be the case for many autistic people who work in a literal way, which, as you can imagine, can mean that we end up adding lots of things that we don’t actually have the capacity for to our plates and put ourselves at risk of burning out.

As you can see, it’s important that we don’t just think that literal thinking means, ‘Oh, she can’t understand sarcasm!’ as is often the understanding that is given to us online and accepted by society, when actually, it has a huge effect on our overall ability to communicate and interact with other people. This is just one example of how autistic traits affect so many more aspects of people’s lives than we give credit to in their textbook definitions.

Over the following pages, I will take the autistic traits listed on the NHS website and break them down in a similar way into what we’re told they mean and what they might actually show up as. In this section, I will use ‘we’ to refer to autistic people, and ‘they’ to refer to society generally, or non-autistic (also known as allistic) people.

The trait:
Finding it hard to understand what others are thinking or feeling

What we’re told it means:

That autistic people are in their own worlds or self-absorbed or that they lack empathy or understanding.

What it actually means and how it might actually show up:

Speaking very generally, and as explained above, we tend to think in a more literal way than most people. If other people think differently from us (for example, more emotionally), it might be tricky for us to follow their line of reasoning. This isn’t to say that anybody’s way of thinking is the ‘right’ way or a better way to work; it’s just that, if somebody works differently from you, it can be difficult to put yourself in their shoes and think in the way that they do. On top of this, we might struggle to read non-verbal communication, such as facial expressions or body language, which means that we don’t have access to all the ‘secret clues’ that other people do that help them to work out how others are feeling.

As we communicate literally, and we ourselves will tend to ‘say what we mean and mean what we say’, we might presume that other people will do the same for us. This might mean that we need somebody to tell us how they feel in black-and-white for us to know. We might not assume, for example, that because somebody is withdrawn, they must be upset. We might not jump to conclusions as quickly, and we tend to wait for somebody to tell us what they want, need, or feel before we assume.

How to better accommodate this trait:

Make sure to always communicate as clearly as possible. Put simply: say what you mean, and mean what you say! In all contexts, settings and situations, make sure that you avoid sayings or phrases that require people to read between the lines, and that you don’t assume that other people will assume what you are thinking or feeling.

The trait:
Getting very anxious about
social situations

What we’re told it means:

That autistic people are overly shy, anti-social or that we have anxiety.

What it actually means and how it might actually show up:

Autistic people are often questioned on our tone of voice, the fact that we struggle with small talk, the fact that we might interrupt the other people in the conversation, along with a whole host of other ‘misdemeanours’. This feeling of ‘always getting it wrong’, without ever knowing what mistake we actually made, can quite rightly cause us to feel very on edge about social situations, as we don’t know when the next mishap will happen. It might even cause us to choose to remain quiet or remove ourselves from situations entirely in order to avoid any further ‘wrongdoing’.

In addition to this, social situations are generally not very predictable or logical by nature, which means that we are unable to prepare for them in the way in which we might like to (or the way in which we are able to prepare for other situations), which can lead to additional anxiety due to fear of the unknown. Although some children are born with a predisposition to anxiety or other mental health conditions, most autistic people will experience difficulties in social interactions from a young age, which is likely to cause anxiety during those situations into adulthood.

How to better accommodate this trait:

Be more open and welcoming of differences! Just because somebody doesn’t communicate, behave or interact in the same way that you do doesn’t mean that there is anything wrong with their way of doing things. For example, don’t laugh if somebody communicates differently to you, don’t judge somebody if they only eat very specific foods and don’t question somebody on their choices. Accept that everybody has different needs, wants, preferences and ways of interacting – and that that is okay!

The trait:
Finding it hard to make friends or preferring to be on your own

What we’re told it means:

That autistic people prefer their own company to the company of others or that we are your stereotypical ‘Sheldon Cooper’ type personality, seen as annoying or irritating to the people around them.

What it actually means and how it might actually show up:

Autistic people tend to have a smaller social battery than most people because, during (neurotypical) social situations, we have to consider so many extra things on top of just the actual ‘socializing’. We have to consider our tone of voice and whether or not we’re making enough eye contact, and navigate our struggles with auditory processing and sensory input. This can mean that we often need to spend more time alone to rest and recuperate.

Also, often it is not that autistic people prefer spending time on their own; it might be that they feel as though they have no other choice. For the reasons listed above, it is a common experience for an autistic person to be ostracized from neurotypical friendships time and time again. After a while, as I’m sure you can imagine, this can become really disheartening – and it can feel like a safer option just to plod on alone rather than risk getting hurt by yet another failed friendship.

How to better accommodate this trait:

As above, be more understanding of and accepting of people who are a little bit different to you or to other people you have interacted with in the past. Different does not equal less. Also, try to look out for the signs of when somebody might be withdrawing or might not have felt welcomed into a group. It could be that they are just naturally more withdrawn (because we all have unique ways of interacting), but it could be that they need a little reminder that they are welcome in order to feel included.

The trait:
Seeming blunt, rude or not interested in others without meaning to

What we’re told it means:

That autistic people choose to be rude, don’t care about how they make other people feel, or don’t understand the importance of being polite.

What it actually means and how it might actually show up:

A lot of the time, autistic people have a naturally monotonous tone of voice. This isn’t us choosing to be blunt or rude, or even that there are any negative feelings behind the words we are saying; it is just the way that the words come out of our mouths. It sounds so simple when writing it out like this, but it’s something that we’re questioned on, judged for, and receive negative feedback on over and over again. If the volume and frequency of the sounds that come out of our mouths don’t change too much within a sentence, this is no reflection of our feelings, intention or mood. It is just a natural part of being autistic.

This might mean that, even if you are saying something in a lighthearted way, it is mistaken for being insulting or rude – without this ever being your intention. As you can imagine, this is a very frustrating experience to have constantly repeated.

On top of this, we’re generally not as expressive with our faces when we’re speaking as other people might be. Facial expressions might not come as naturally2 to autistic people, and it’s often something that we try (and often fail!) to mask in order to please the people around us. A common experience that lots of late-diagnosed autistic people share is spending hours and hours during their childhood practising facial expressions in the mirror – ‘surprised’ for opening presents on Christmas morning so that we’re not accused of being ungrateful, ‘happy’ for meeting new people so that we’re not accused of being rude, or ‘sad’ for when we hear bad news so that we’re not accused of being cold and uncaring. The combination of us having both a voice and a face that are less expressive than most people’s can lead neurotypical people to falsely assume that we are rude or blunt.

People might also (incorrectly) perceive us as being blunt because we are much more likely to communicate concisely and by using each word literally, as we discussed earlier in this chapter. I often refer to this by saying that I don’t add any ‘fluff’ to my sentences. For example, on being asked to share constructive criticism on a project, a neurotypical person might add filler words or skirt around the subject by saying things like, ‘It’s just my opinion, but …’ or, ‘It’s just a minor detail, but …’ An autistic person, however, might be more likely to cut straight to the point. This, again, isn’t us being rude or blunt; we are simply accounting for the fact that communication is energy expensive to us and speaking in the way that comes most naturally to us.

We can also be accused of being blunt or rude because of the fact that we are usually very honest. If somebody asked me if I liked their new haircut, I wouldn’t want to lie to them! I personally would rather hear the truth myself, so I would be more likely to share the honest truth with the person asking my opinion. But an allistic person, who might not communicate as concisely or honestly, might prioritize the other person’s feelings over the truth and tell them that they loved the haircut, regardless of whether they actually did or not.

How to better accommodate this trait:

Try to always listen to the literal words that people are saying, rather than judging what they are trying to say by the ‘tone’ they use, or looking for hidden meanings. Remember not to take things as a personal attack if somebody is very to the point and honest with you. I often tell people that if I come across as blunt or rude, that’s actually a good sign for them; it means that I feel comfortable enough around them to unmask and communicate in my most natural way, rather than masking and people-pleasing as I might do around people I know less.

The trait:
Finding it hard to say how you feel

What we’re told it means:

That autistic people either ‘don’t have’ feelings, or don’t care to communicate them to the people around them.

What it actually means and how it might actually show up:

Alexithymia is a part of autism that isn’t talked about too much, but that I really resonate with. It is described as the inability to differentiate between, identify or describe your feelings.3 For me, one way that this shows up is what I call ‘getting a ball in my chest’. When I feel negative emotions, I get the physical sensation of tightness in my chest, as though there is a ball of emotions in there. While I can acknowledge that the ball is there, I find it hard to work out whether that feeling is due to sadness, disappointment, anxiety, empathy, loneliness, feeling hurt, or any other emotion. All those feelings show up physically in the same way, so all I know is that I am feeling some sort of negative emotion, but I struggle to work out exactly which one it is. If we don’t know exactly how we’re feeling ourselves, it can be tricky for us to communicate that with somebody else.

We also often process things more slowly than neurotypical people. This means that, during a tricky situation, we might not have worked out how we are feeling while the conversation is happening. Imagine, for example, that during a face-to-face conversation, I had asked my partner if they would join me at an event that I had been invited to. They might respond by saying, ‘Would you mind if I didn’t? I have a lot on at the moment, but if it means a lot to you, or if you would feel upset that I wasn’t there, then I can move things around to join you.’ In the moment of the conversation, I might not have properly processed the information that they had given me, so I might say, ‘Of course, don’t worry about it! I wouldn’t want to add more things to your plate.’ A few hours later, though, once I’d had time to process the conversation, I might realize that I did feel a little disappointed that they wouldn’t be joining me, but feel that I had missed my chance to express this feeling to them. It wasn’t that I lied about my feelings during the original conversation, or even that I found it hard to share my feelings, it was that I hadn’t worked out what exactly those feelings were just yet. (You might relate to this as a neurotypical person, but the difference is that you are consciously choosing to be polite, rather than not having the chance to process yet.)

On top of this, for those of us who have spent a lot of time undiagnosed, years of being misunderstood can make it hard to speak up about how we feel. We have been told, either explicitly or through our experiences, that our feelings and needs are ‘wrong’, ‘invalid’ or ‘dramatic’. This might mean that we try to ignore how we are feeling or decide to keep it to ourselves.

How to better accommodate this trait:

Lindsay Braman, artist, therapist, educator and visual translator, has created a brilliant resource, the Emotion Sensation Feeling Wheel,4 to help with this (you can find the link in the resource list at the back of the book). It lists a whole range of physical sensations that somebody might experience and links them back to the emotions that they might point to. This is a great way to identify which exact emotion somebody is feeling, which can then give them the knowledge and understanding to be able to help themselves or process the emotion. In addition to this, when you are asking somebody a more complex question or saying something that might prompt emotion, try to give that person time to process what you are saying, and don’t always expect an immediate answer.

The trait:
Having the same routine every day and getting very anxious if it changes

What we’re told it means:

That autistic people are controlling, live very boring, repetitive lives or meticulously plan out every single task in their day.

What it actually means and how it might actually show up:

Personally, I think that my need for routine is heavily impacted by the fact that living as an autistic person in a world built for neurotypical people means that lots of things feel out of my control. Sounds are often louder than I’d like them to be, social situations often leave me feeling lost and confused, and everyday life seems to leave me feeling drained. By following a routine, there is at least one thing in the world that I am in control of – and I think this sentiment is shared by the majority of the autistic community!

I also think that the way this trait is worded makes a lot of autistic people feel as though it’s not something that they relate to. It was the part of my diagnostic assessment that the psychiatrist said they felt applied to me the least. ‘Having the same routine every single day’, for me (maybe it’s the literal thinking again!), makes it sound as though the whole routine, from the moment you wake up until the moment you fall asleep, is planned and repeated. This can be the case for some autistic people, and is a completely valid way of feeling safe and secure, but definitely isn’t the case for me. What I can relate to, though, is having certain parts of my routine that I repeat over and over again.

For example, when I was working in an office, I would set off from home at the same time every single day and always walk the same route. I would take the same breakfast with me every day (pain-au-chocolat) and eat it en route. At lunchtime, I would always go to the petrol station across the road to buy my lunch, and buy the same meal deal each day. It wasn’t that every single detail of every single day was the same, but that there were certain parts of my routine that I repeated time and time again because they made me feel in control and more at peace with the day.

As well as fulfilling my need for control, sticking to routines also helps me to overcome decision paralysis. When you already have a busy brain, and when that brain is constantly taking in so many different stimuli and pieces of information, it can be hard to keep track of all the different decisions we all have to make every single day. What should I wear? What should I eat? When should I have a break? When should I exercise, and what type of exercise should I do? A lot of the time, having too many different decisions to make or too many different options to choose from will mean that I become overwhelmed and simply don’t make any decision at all. If I can’t work out what I should cook for my dinner, I might just not eat at all. But by standardizing some of these decisions and sticking to a routine, I can free up extra brain space for the decisions that really need it, and help prevent decision paralysis.

How to better accommodate this trait:

I think the answer to better accommodating many of these traits is the same; it is rooted in kindness and understanding. There was a popular meme circulating recently that said something along the lines of, ‘People say that they would never bully somebody for being autistic … but then pick on people for eating the same thing every day, not trying different things in their social life, not having many friends or having to keep to the same routine.’ Remember that somebody else’s ways of working and ways of coping do not affect you and should not be something you judge or comment on.

The trait:
Noticing small details, patterns, smells
or sounds that others might not

What we’re told it means:

That autistic people are ‘super-human’, robot-like, geniuses, or overly sensitive.

What it actually means and how it might actually show up:

I am such a geek – I just did a little happy dance in front of my keyboard when this heading came up! I think that this ‘trait’ actually combines two different things – firstly, pattern recognition, and secondly, bottom-up thinking5 – which just so happen to be the two autistic experiences that I love to talk about the most, and that my friends and family are probably sick of hearing about (sorry, not sorry!).

So, first of all: pattern recognition. The examples that are usually used for this trait are things like recognizing patterns in car number plates, being really good at IQ tests or brain-training games, or being the stereotypical ‘autistic data expert’. But what I find so interesting about pattern recognition is that for many people, as well as including these things, pattern recognition can also mean so much more than this. I remember a conversation with one of my good friends, Abby (who is autistic and ADHD, like me), at the beginning of our friendship, where we both said that, before finding out that we were neurodivergent, we had been 100% convinced that we had some sort of intuition or psychic power. We always seemed to be able to work out what was going to happen next – both in films and books, and in real-life situations.

For example, a few years ago I had been dating somebody for a couple of months. We had made plans one evening, but he had texted me at lunchtime to say that he wouldn’t be able to make it because he was having a stressful day at work. The message was very plain and simple. To the untrained eye, it didn’t give any sort of hint that anything (other than his workload) was wrong. But as soon as I read this message, I had this overwhelming gut feeling of just knowing that the relationship was over. My gut feeling turned out to be right, we didn’t go on any more dates after that message, and at the time, I couldn’t work out how on earth I had just known what was going to happen next.

But now, knowing what I do about my autistic brain and its pattern-recognition abilities, I can see that it had ever-so-cleverly been picking up even the subtlest of differences in his communication over the days beforehand. Maybe he had taken slightly longer to reply to my messages than usual, maybe he wasn’t quite as engaged in conversation the last time that we saw each other, or maybe his body language around me had slightly altered. Using its expert pattern-recognition abilities, my brain was able to connect the dots and recognize the pattern that was occurring, tying it back to previous experiences. (Maybe I shouldn’t be exposing myself here in sharing that, yes, I had several of these failed dating/‘talking stages’ for my brain to be able to recognize the pattern from, but here we are. All in the name of awareness!) Very clever, huh?

So pattern recognition doesn’t only apply to shapes and patterns; it can help us to predict patterns in relationships, social situations, workplaces and all sorts of other places, too.

Next up: bottom-up thinking. This is honestly one of the things that I love to talk about the most, and I had my first lightbulb moment about this trait when reading Dr Devon Price’s book Unmasking Autism, which you should absolutely go on to read once you’re finished here (and whatever else you can get your hands on that has been written by Dr Devon Price because he is a fantastic writer).

Bottom-up thinking, a term first coined by Gibson in 1966, comes from the idea that there are two different ways that people process information. Most people (and this style seems to be most common in allistic people) process information in a top-down way. This means that, when faced with a situation, they will start with the context of the situation as a whole – that they understand from piecing together their experiences and understanding of similar situations – and work downwards. So if, for example, they were to walk into a restaurant, their brain would go, ‘Ooh, okay, we’re in a restaurant! I know what this means!’ and they would pick out pieces of information as they needed them.

They would listen to the person they were sitting with, as that conversation was important to them, and they would read the section of the menu that they were interested in. When they needed to visit the bathroom, they would look around for the ‘TOILETS’ sign, take in that information and use it to find their way there. When their food arrived, they would take in the smells and appearance of their food. But for the most part, they’d be blocking out all the sensory input going on in the background that wasn’t important to them. Their brain would have turned down the volume of the conversations happening around them and the squeaking of somebody’s chair, turned down the smells of all the different dishes on the tables around them, and ignored all the different signs dotted around the walls that they didn’t need to read just yet. They start at the top, the context, and work downwards to fill in the details of the situation that they need.

For those of us who are bottom-up thinkers, though (which seems to usually be the case for autistic people), the opposite happens. Gibson argued that perception is a bottom-up process where we take in the raw sensory stimulus and piece it together to work out what is going on. If we were to walk into that same restaurant, we would walk through the door, and our brains would go, ‘Well, well, well, what have we here?’ We’d start at the bottom, and take in all the different sounds – the squeaky chairs, the clashing conversations, the pots and pans clashing in the kitchen, and the music playing in the background. We’d take in all the visual stimuli – the different dishes being carried to the tables, the specials board on the wall, the signs for the toilets, the artwork on the walls and the people on each of the tables. We’d take in the different smells – from the different dishes on different tables and the cooking in the kitchen. And from here, piecing together each bit of information, our brains would work from the bottom upwards and eventually go, ‘Ah! We are in a restaurant! And I now know this individual restaurant very well!’ We start from the bottom, process the information brick-by-brick, and piece it together to build the whole picture.

This explains why we notice those smells and sounds that other people might not; we need to collect all the information we are given in order to piece together the situation that we’re in. On top of this, our brains aren’t generally as good at prioritizing which stimuli are important and using that information to filter out or turn down the bits that don’t matter as much. An allistic person can focus solely on the conversation they are involved in, and turn down all the background noises so that they are able to concentrate, whereas an autistic brain receives all the different sound waves, all at the same time, and all at the same volume.

Now do you see why I find it so interesting?! It makes everything make sense – including the fact that we can become overwhelmed when entering new environments. I mean, can you really blame us when we have all that stimuli pouring into our brains all at once?!

Bottom-up thinking is also the reason that we might need to ask more questions than other people do. For example, if they are invited to a party at a certain venue, most people are able to use their experience of the context – parties that they have been to in the past, or if they have visited that venue before – to work downwards and fill in all the details that they need to know about the party. A bottom-up thinker, though, is generally working from base camp, so we need to ask more questions to know what to do or how to behave. What do I need to wear? What time should I arrive? Who is going to be there? Will there be food? What does the venue look like? How can I get there? Asking lots of questions isn’t us ‘being annoying’; it’s us collecting the information that we need in order to be able to piece together the situation.

How to better accommodate this trait:

Be sure to give people (everyone, but especially autistic people) as many details as you can when inviting them somewhere so they have sufficient information to make a decision. Don’t assume that anybody will ‘naturally’ understand the context of a situation, and be patient and understanding if somebody needs to ask more questions than you expect. If you can also consider the potential for sensory overload in different environments, this can be super helpful to ensure spaces are inclusive for autistic people. I share more examples of this later on in Chapter 9: In the Workplace, but some really simple things that everyone can do are listening to music in headphones rather than out loud in busy spaces like the office, or booking quieter restaurants when eating with autistic people.

The trait:
Having a very keen interest in certain subjects or activities

What we’re told it means:

The stereotypical autistic young boy who can name every single fact about every single dinosaur species, or the ‘Sheldon Cooper’ stereotype of the scientist who knows everything about their ‘favourite subject’.

What it actually means and how it might actually show up:

This one is more commonly known as ‘special interests’, and it relates to an autistic person’s tendency to become particularly interested in one subject and want to know as much about it as possible. In Chapter 5: The Lost Generation, we will discuss in more detail the way that the diagnostic assessment still uses the examples of ‘birds, cars, trains and planes’, which are very stereotypically young, male interests. In reality, though, since autistic people are as diverse as humanity is overall, special interests can be hugely varied and be pretty much anything.

Society and the media also seem to perpetuate the idea that these special interests might be a bit ‘useless’ – ‘What good can possibly come out of knowing every detail about every route on the London Underground?!’ In fact, as well as bringing autistic people a huge amount of enjoyment and comfort, their special interests can mean that they have a huge amount of knowledge about, and drive to understand, a particular subject, which can bring them a lot of success.

One of my closest friends, Milly, who I have been lucky enough to meet since posting about my experiences online, is an autistic and ADHD sex educator and author. Since their early teenage years, their special interest has been sex education. This means that, by their early twenties, they had already been studying, campaigning for and writing about sex education for over ten years! They have written and published the most amazing and informative book, worked with huge companies, and given incredible talks – which, without their special interest, they never would have had the opportunity, or the knowledge, to do. They have changed many lives through their content and their campaigning, and they know more about sex education than anybody else I know (and possibly anyone else on the planet, but now I’m being biased). (If you’re intrigued, you can find their brilliant content via TikTok at @itsmillyevans6 or in their amazing book, Honest: Everything They Don’t Tell You About Sex, Relationships and Bodies.)

Another of my closest friends, Ash, founded Great Influence, the UK’s leading talent agency for entrepreneurs. We both have a shared special interest in all things social media and content creation, which means that we spend hours and hours researching content, sending each other ideas via WhatsApp, and thinking up different ways to experiment with the content we are putting out on social media. This special interest has led to Ash working with some of the most successful people in the country to help them with their own content,7 and it’s led to me building the platform that meant that I was given the opportunity to write this book in the first place. Without that special interest in the subject, we wouldn’t have dedicated so much time to understanding, experimenting with and creating written and video content – and so our careers wouldn’t be where they are now. Hopefully this puts into perspective how valuable special interests can be, and how far they can take you beyond naming dinosaurs (not that there is anything wrong with that either).

It is also quite common for autistic people, especially those who have spent a long time undiagnosed, to develop special interests based around communication or relationships, which can play a huge part in teaching them to ‘successfully’ mask, or even around neurodivergence or autism itself. I mean, look at me! I only discovered the world of neurodivergence eighteen months ago, and here I am writing a book about autism and ADHD! That’s some serious learning, understanding, and obsessing to get through in such a short amount of time, all thanks to my tendency to develop a ‘very keen interest in certain subjects or activities’.

But when it comes to the more traditional sense of the word, one of my longest-standing special interests, which I have simply got to ramble on about while I have the chance, is indie music. I actually think this being my special interest of choice played a big part in my autism going undetected for such a long time; quite a lot of the people who enjoy this type of music are equally as in love with it, and so my raging obsession didn’t stand out as much as it could have done if I’d chosen something else to be interested in. To give you a few examples of the levels that my LOVE for this music reaches:

I have seen most of my favourite bands ten+ times in concert. I went to see The Twang three times during their last tour alone, in the space of two weeks.

I have lyrics of The Twang, Milburn and Arctic Monkeys tattooed on my body forever (!!!!), along with the lemon logo adopted by The Stone Roses, and the album artwork of Tom Misch’s first album.

According to my Spotify Wrapped, last year, I was in the top 0.1% of listeners for both Dylan John Thomas and The Royston Club, who are another two of my favourites.

At the time of writing this list, The Lathums’ most recent single was released two days ago. It has been on repeat, constantly, in my headphones for most of that period. I haven’t listened to a single other song, and it has been on a loop throughout the writing of this entire chapter.

So, as you can see, these special interests can be really deep-rooted. They can bring autistic people great, great joy. The fuzzy, warm feelings I get inside when listening to my favourite bands are so much more intense than any other kind of happiness that I have experienced and, in fact, so much more intense than I can even put into words. In a world that isn’t always the kindest to autistic people, special interests provide a safe place where we can unmask, be ourselves, not worry about ‘getting things wrong’, and feel real, true, autistic joy.

How to better accommodate this trait:

As a society, we need to start appreciating special interests and seeing them as a positive thing rather than an obscure or unhealthy obsession. As Dr Carly Jones MBE says,8 ‘If anyone not autistic had spent year after year dedicated to researching, learning and talking about a specific subject matter, they wouldn’t be judged as having an obsession, symptom or special interest. The non-autistic adult would be an expert. So let’s call this obsession, symptom, special interest what it really is: an expertise.’

The list goes on

Overall, there are a whole load of autistic traits that have a whole load of effects on the lives of the people who experience them – in both positive and negative ways, and sometimes in a combination of the two, depending on the situation. Some other traits that aren’t included in the NHS list but that I think are worth taking the space to notice are:

Struggling with temperature regulation9
– Meaning your body might struggle to regulate to a normal body temperature in the same way that other people’s can. I always seem to be either too hot and sweating, or too cold and shivering; there doesn’t seem to be any happy medium. This can add to the uncomfortable nature of autistic people out of the house, at work or in social situations where you can’t control what you’re wearing.

Having a strong sense of justice10
– Meaning you feel very strongly that things should be right, true, or fair, and may feel very unsettled if this is not the case. This isn’t just ‘right and wrong’ regarding a crime or following the rules. My strong sense of justice shows up in strange ways, like feeling really unsettled if the star couple doesn’t end up together in a rom-com film when I feel as though they NEED to be together, or being affected much more deeply than most people when unjust things are going on in the world.

Stimming11
– Stimming is essentially a repeated action that an autistic person performs in order to self-soothe or self-regulate. A lot of people know the stereotypical stims of ‘flappy hands’, rocking backwards and forwards on toes, or repeating certain words and phrases – but it can also be more subtle things like fiddling with your hair, picking your nails, playing with jewellery, playing with a stim toy, or listening to the same song over and over again.

Rejection Sensitive Dysphoria12
– We’re prone to perceiving things as rejection, even if they’re not meant that way. This one is quite a meaty one, and it’s also shared with ADHD, so we’ll get into it a little bit more later on.

Differences in executive functioning13
– As we mentioned in Chapter 2: The Basics, this one is shared with ADHD. It is essentially a difference in the way that our brains can use the skills that we need in order to do everyday things. We’ll unpack it a bit more in the next chapter, too, because there is a lot to it.

Struggling with interoception14
– Our brains don’t tell us when our bodies need to eat, when we need to drink, when we’re in pain or when we need the toilet in the same way that other people’s do.

Other physical symptoms
– There has not been as much attention paid to or research done around these, and there isn’t a full understanding of which are due to co-occurring conditions like Ehlers-Danlos Syndrome (a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues that typically cause very flexible joints and stretchy fragile skin), but studies have suggested that autistic children are about four times more likely to have gastrointestinal issues15 than their peers, and autistic people commonly have hypermobile joints (joints that move more freely than they should and are very flexible).

—
Recap

In this chapter, we have explored:

The key traits of autism.

How they might show up in somebody’s life.

How and why this differs from what people might expect.

What society can do to accommodate these experiences.

Your takeaway box

Make a list

It might be worth taking some time to go through each of the traits we have discussed, one at a time, and working out if you feel as though they resonate with you. If they do, you could make a list of the ways that they show up for YOU. We’re all different, which means that we all feel the effects of each trait in different ways – and we might not even relate to some of them at all. You don’t have to experience every single autistic trait in order to be autistic, but working out which bits you do and don’t relate to can help you understand yourself a little bit better.

Learn to forgive

By making a list of the traits that resonate for you and the ways in which they show up, you might feel as though you can start to forgive yourself for some of the things that you struggle with, some of the ways that you behave, and some of the things that people have judged you for. Remember: you are not a bad person; you are just autistic, meaning you might think, behave, communicate, or do things slightly differently. This is one of the most important realizations that came with discovering I was autistic, and when I found out that things I had always thought made me ‘bad’ were actually just part of an undiagnosed disability, I wanted to give younger Ellie a big old cuddle. Be gentle with yourself, too.

Accept even when you can’t understand

Something that I think is really important for everybody to understand when reading this chapter, but specifically important for neurotypical readers, is that even when you can’t understand somebody else’s experience, you should still accept it. We talk a lot about empathy and understanding what somebody else is going through – but this isn’t always possible. If you are reading this list of experiences as a non-autistic person, you might not be able to ‘put yourself in the shoes’ of someone who experiences these traits – which is to be expected, because they will be outside of anything that you have experienced before. What’s important, though, is that even if you can’t understand somebody else’s ways of working or thinking, you accept and trust them to be true, and you respect them. Just because something is outside of your own experience or even your own imagination doesn’t mean it isn’t valid, true, or worthy of respect.

4

Translating ADHD Traits

Just as we explored in the last chapter on autism, although the awareness of ADHD has greatly increased over the past few years, people generally still have a very limited understanding of how ADHD really shows up. We, as a society, haven’t been given a comprehensive education as to how neurodivergent traits actually affect someone’s life, alter their communication styles, or require accommodation. Throughout this chapter, I will try to change that by looking more closely at key ADHD traits – you might remember some from the diagnostic criteria that I shared in The Basics chapter – and explain how those traits might show up as real-life experiences.

In this chapter, we’ll dig into:

The key traits of ADHD.

How they might show up in somebody’s life.

How and why this differs from what people might expect.

What society can do to accommodate these experiences.

Yes, ADHD affects the way that I behave – but it also affects the way that I think, feel, process, and, essentially, live!

ADHD isn’t actually about a deficit of attention but instead a dysregulated attention system.

The key traits of ADHD

Just like in the last chapter on Translating Autistic Traits, even if you have heard of some of the traits in the diagnostic criteria, and even if you think you have a relatively good understanding of ADHD, the likelihood is that there are things in this chapter that you won’t know, regardless of whether you are neurodivergent or not – just like I didn’t when I was first diagnosed.

As we discussed in Chapter 2: The Basics, ADHD stands for Attention Deficit Hyperactivity Disorder – although this isn’t the most accurate description of what it really is! The stereotypical representation of ADHD in the media over time has tended to be limited to a hyperactive ‘naughty schoolboy’ or someone who is easily distracted (Think, ‘Ooh, squirrel!’). This means that inattentive traits, especially, are not explained, represented or understood very well, and many of the media and societal explanations of ADHD are primarily rooted in hyperactivity. The NHS describes ADHD as ‘a condition that affects people’s1 behaviour’ – which, I feel, doesn’t do justice to the extent of its effects on somebody’s life. Yes, ADHD affects the way that I behave – but it also affects the way that I think, feel, process, and, essentially, live.

A significant factor of ADHD is an atypical balance of chemicals in the prefrontal cortex part of our brain. This affects our executive functioning skills, which are the mental processes that enable us to plan, focus attention, remember, and juggle multiple tasks. Because of this, ADHD has been referred to as a ‘disorder of self-regulation’.2

The eight executive functions, as explained further in Chapter 2: The Basics, that all people have are:

1. Working memory

2. Self-monitoring

3. Inhibition/impulse control

4. Emotional regulation

5. Flexibility

6. Planning and prioritization

7. Task initiation

8. Organization

But, to recap, studies indicate that ADHDers have approximately a 30% delay in the development of these executive functions, and that adults with ADHD tend only to develop around 75–80% of the executive functioning capability of their peers (which are usually fully developed by age thirty), which means that ADHDers tend to have difficulties with or differences in all of the above skills. I think this is important to reiterate, as it is helpful to have this in mind while exploring the following traits – because many of these executive functioning skills are linked to the traits ADHDers experience.

Over the following pages, I will take the ADHD traits that are listed on the NHS website and break them down into what they are, what people tend to assume they relate to, and how this might differ from people’s actual experiences. I will also share ways society can better accommodate ADHDers with their traits. In this section, I will use ‘we’ to refer to ADHDers, and ‘they’ to refer to society generally, or those without ADHD.

Inattentive traits (difficulty concentrating and focusing)

The trait:
Having a short attention span
and being easily distracted3

What we’re told it means:

This is the stereotypical ‘Ooh, squirrel!’ behaviour that I mentioned earlier and is typically associated with young, naughty boys. People think that ADHDers just cannot focus and will constantly get distracted.

What it actually means and how it might actually show up:

ADHDers have interest-led brains, which is commonly explained by our differences in dopamine regulation (although, as mentioned in Chapter 2: The Basics, more research needs to be done on this). This means that our brains are motivated by different things to most people – these are usually summed up as the following:

Interest: Something that our brains find interesting – a topic we’re enthusiastic about or something that makes us curious.

Novelty: Something that is new or has a novelty game-like factor to it.

Challenge: Something that is challenging to us or something with an element of competition (either against somebody else or against ourselves and our own limits).

Urgency: Something that has a tight, time-based deadline.

So, if a task doesn’t have one of these motivators attached to it, we will probably struggle to focus and be easily distracted. This is because the task itself isn’t providing our brains with enough stimulation; high novelty-seeking and low self-directedness4 have been scientifically associated with the personality of ADHDers.

However, if a task does have just the right combination of interest, novelty, urgency or challenge, we can focus just fine; we might even be able to hyperfocus.

Hyperfocus refers to an intense focus, fixation or interest in a certain activity for an extended period. It is best explained as a more intense version of a neurotypical ‘flow’ state or feeling of being ‘in the zone’. This is where somebody is completely absorbed in what they are doing,5 as though they could stay doing it forever. Hyperfocus is, in fact, the exact opposite of having a short attention span – when experiencing hyperfocus, ADHDers struggle to stop paying attention. For example, when writing the previous chapter of this book, I sat for four hours solid – without moving, eating, drinking, or taking a break. In one study of hyperfocus, a participant said that hyperfocus was like ‘being able to channel all that random energy6 that is flying around in my head into one intense hyper-focused sort of beam. It’s giving the brain a task that it’s sort of designed for.’ They described the ADHD brain as being ‘unfocused, quite scattered, chaotic and a bit random, but give that brain something that you can really tune into … I get this incredible intense concentration, and that’s great for work’.

ADHD has been scientifically linked to the ability to hyperfocus, and these episodes of long-lasting, highly focused attention suggest that ADHD isn’t actually about a deficit of attention, but instead a dysregulated attention system. On the one hand, if something is highly interesting to us (like something challenging or something we are passionate about), we might be able to focus much more effectively than even a neurotypical person could. On the other hand, if something isn’t stimulating or interesting (like admin tasks or housework), it can be tricky for us to concentrate. What can be difficult for ADHDers is that we don’t always have much choice about or control over what our brains deem interesting enough to focus on! However, the good news is that once we learn that urgency, interest, novelty and challenge are our key motivators, we can use hacks and strategies to add these things to everyday tasks to make them more attractive to our brains.

For example, this might look like:

Playing podcasts at 1.5× or 2× speed to add challenge to the task of listening to them.

Working on our laptop from a new café to add novelty to admin tasks.

Setting a challenge of ‘how much tidying can I get done before this song finishes?’ to add competition and urgency to a task.

As with most of the ADHD experience, the key to managing our focus is learning to work with our interest-led brains rather than against them.

How to better accommodate this trait:

Accepting that the ADHDers in your life might focus and concentrate differently from how you do is super important. Setting deadlines for tasks to add urgency or combining different tasks to make them more engaging can be a great way to add stimulation and make them more ADHD-friendly, too. It’s also vital to remember that wanting to do something and being able to do something are two completely different things! I might know that I need to do my accounts, sort out my laundry, or catch up on emails, but sometimes, my brain just won’t let me. This isn’t me being lazy or difficult or trying to get out of something; it’s me struggling against my brain, trying to figure out how to do something I’m just not wired to do. As with many traits in this book, a little understanding and empathy can go a long way.

The trait:
Making careless mistakes – for example, in schoolwork

What we’re told it means:

ADHDers have low attention to detail and might regularly mess things up – maybe making spelling mistakes or arriving to an appointment on the wrong day or at the wrong time.

What it actually means and how it might actually show up:

Research has shown that ADHDers have slower and more variable reaction times7 and make more errors of omission (like missing details or instructions or forgetting appointments or tasks), indicative of poor attentional ability. This means that our struggles with attention can result in us making mistakes – however, to me, they are not ‘careless mistakes’ at all.

There is nothing careless about the mistakes an ADHDer makes. In reality, we care greatly about the things that we do! The mistakes don’t come from a lack of care; they come from a struggle to focus or from the fact that we’re often working and processing at super speed. If anything, we probably care too much about these ‘careless mistakes’ – because it’s another thing for us to feel, or to be made to feel, bad about.

For me, when writing this book, it feels as though my thoughts and ideas are whirring at a million miles an hour. This means that sometimes the words are flowing almost faster than I can keep up, so I might not notice if something was spelt wrong or if I hadn’t typed the sentence in the same way it had sounded in my head. Luckily, I have spellcheck and Grammarly (and an amazing editing team!) to keep me in order, but without these bits of tech, it would be very tricky for me to get everything right.

In a society that places great importance on attention to detail, spelling and grammar, repeatedly making these ‘careless mistakes’ can leave you feeling rubbish. It might even leave others thinking they can’t trust you or that you’re somehow incompetent. Making occasional mistakes is a part of being human (none of us are perfect!), but when these mistakes happen over and over again and become a recurring theme in our lives, they can really take a toll on our self-esteem. It might even feel easier for an ADHDer to adopt a scatty or ditzy persona to shield themselves from others pointing out what they already think and feel about themselves.

An inattentive or impulsive mind (or a combination of the two) can cause us to make these mistakes for a range of different reasons:

ADHD can affect our ability to make sound decisions – like whether we actually have time to do this fun thing when we need to be getting on with our work – because of our impulsive nature.

ADHD can affect our ability to manage our time efficiently, which might mean that we’re rushing, causing more mistakes. Research has proven that ADHDers have difficulties in being able to assess time8 and feel as though time is passing them by without being able to complete tasks accurately and well.

As well as struggling with managing our time, a recent study showed that 75% of ADHDers were classified as ‘chronic procrastinators’9 – even more reason that we might be rushing to get a project completed!

We might also struggle to follow instructions because our interest-led brains find long, boring instruction manuals impossible to focus on.

How to better accommodate this trait:

Being kind, understanding and patient when mistakes arise can make a world of difference to somebody who might already be beating themselves up! Little mistakes are often that – little! It’s often not the end of the world, so don’t treat it as such. Helping someone to correct their mistakes without causing shame is a tiny way to make a huge difference.

The trait:
Appearing forgetful or losing things

What we’re told it means:

That ADHDers are disorganized and unreliable.

What it actually means and how it might actually show up:

Often, being forgetful and prone to losing things is caused by the fact that we struggle with object permanence10 or object constancy as ADHDers. Object permanence means understanding that items and people still exist even when you can’t see or hear them.

This concept was discovered by child psychologist Jean Piaget and is an important milestone in a baby’s brain development: if you’re playing peek-a-boo with a one-year-old, they are endlessly entertained because, to them, when you’re hidden behind something, you cease to exist. Then – peek-a-boo! – you spontaneously reappear. How exciting! But if you play that same game with a four-year-old, it doesn’t have the same appeal; because their object permanence has developed, they know that you’re just hiding and that, even when they can’t see you, you still exist. Similarly, ADHDers might struggle with object constancy, as the development of this skill in ADHDers is thought to be delayed or impacted – the research is very limited, but it’s an experience that is widely spoken about and shared in the ADHD community.

Struggling with object constancy essentially means living in a state of ‘out of sight, out of mind’, and this can show up in a whole range of ways:

Having a really keen interest in a hobby – also known as a hyperfixation – for a couple of weeks, buying all the supplies for that hobby, putting them in the cupboard and forgetting about them altogether. Those hobbies go to what I like to call The Hyperfixation Graveyard – but the graveyard isn’t just for hobbies. Any hyperfixation that’s been and gone can end up there: a snack, a song, a new outfit, or a phrase.

Wearing the same clothes over and over again – because you forget that the ones crumpled in the back of your wardrobe exist. You pick something from the clean-clothes-doom-pile (that’s waiting to be hung up) because they are right there in your line of sight, and you don’t even think about the ones still in the wardrobe, creating a cycle of wearing, washing and re-wearing the same clothes.

Forgetting that fresh fruit and veg in your fridge drawers exist and finding them gone off a week (or, god forbid, more) later.

Struggling to remember to keep in contact with friends and family if you don’t see them regularly or if they don’t live close by. Without in-person reminders, it’s easy to almost forget that your friends exist, and it can often feel as though your brain is just so busy with the day-to-day that it doesn’t have the capacity to remember who you need to text back – especially someone you haven’t seen in a while.

It can also show up as emotional impermanence in friendships or relationships. In the same way that our struggles with object permanence can mean we forget objects exist when we’re not reminded of them, we might have struggles with emotional permanence, which means we need to be constantly reassured and reminded of someone’s feelings for us to know that they are still true.

How to better accommodate this trait:

Allowing the ADHDers in your home to be ‘a bit messy’ can help them to get around their struggles with object permanence. For me, object permanence often looks like putting something in a ‘safe place’, forgetting that it exists for a while, forgetting where that safe place is once I need the thing, and then getting very agitated when I can’t find it. My mum recently made the observation that I look like a cartoon character ripping everything out of a suitcase and launching it behind them when I am looking for something! Being ‘tidy’ (a.k.a. keeping things hidden away in cupboards) just doesn’t work for us – we need things on show!

Instead of encouraging ADHD family members, partners or housemates to ‘just be tidy’ and keep things stored away in cupboards, encourage and allow them to keep the things they need in obvious places:

Keep keys on a hook next to the front door.

Keep any ongoing paperwork in a tray on top of the fridge or on the kitchen worktop.

Keep school, gym, or work bags on hooks in the corridor.

Don’t make people feel guilty or ‘messy’ for keeping things on show; it is a great way that they can make life easier for themselves.

Other inattentive traits

The following traits are also listed on the NHS website, but I have not gone into as much detail about them, as I think these traits all have similar explanations to the ones we have listed above:

Being unable to stick to tasks that are tedious or time-consuming.

Appearing to be unable to listen to or carry out instructions.

Constantly changing activity or task.

Having difficulty organizing tasks.

In short, these traits are a manifestation of the way that our brains are interest-led and constantly in search of stimulation. This means tedious tasks won’t hold our attention, as our brains will look elsewhere for that ever-important dopamine hit.

I think it’s also important to point out that having differences in the way that we concentrate doesn’t mean that we are ‘bad’, ‘wrong’, or ‘less capable’; it just means that we need to alter our ways of working to suit our brains. For example, ‘appearing to be unable to listen’ might actually just mean that we can’t sit still and quiet to listen in the same way that our neurotypical counterparts can, rather than meaning that we’re not listening at all.

For me, focusing is much easier when I am moving, on my feet, or playing with a fidget toy. It might also help me to have some background noise to further increase the stimulation my brain is receiving or even to be scrolling on my phone at the same time. From the outside, I might not look like I’m listening to what somebody is saying while I’m scrolling through TikTok, playing with a fidget toy, and walking around, all at the same time – but I’ll be absorbing the information just fine.

Hyperactive and impulsive traits

The trait:
Being unable to sit still, especially
in calm or quiet surroundings, and excessive physical movement

What we’re told it means:

The naughty little schoolboy narrative of ADHD that we are often shown in the media has us imagining somebody rocking backwards and forwards on their chair, fidgeting and being disruptive.

What it actually means and how it might actually show up:

People with hyperactive ADHD feel the need for constant movement. They often fidget, squirm, or struggle to stay seated. Children often appear to act as if ‘driven by a motor’11 and run around excessively, and people of all ages may talk non-stop, interrupt others, blurt out answers, and struggle with self-control. But, as we’ve discussed above, this isn’t because they aren’t listening or don’t care; it’s because of hyperactivity or needing extra stimulation.

For me, this can feel like a real physical pain if I am forced to sit still. In school, I would always be shaking my leg up and down while seated or drumming my fingers on the table (probably much to the annoyance of my teachers and classmates), and now, as an adult, sitting still in meetings or at a conference is very tricky for me, and I’ll always have a fidget toy on hand.

As well as experiencing physical hyperactivity, a lot of my hyperactivity has always occurred internally, in my thoughts. Looking back, I think this is why my ADHD was previously misdiagnosed as Generalized Anxiety Disorder. When I explained to my parents or doctors that I had hundreds of thoughts racing around my head, they misinterpreted what I was saying and assumed that these thoughts were worries or that I was ruminating and experiencing anxiety, but, in reality, it was just that I had a really hyperactive mind because of my ADHD.

Hester, who was interviewed as part of a BBC Insights article12 about the late diagnosis of women with ADHD and diagnosed aged thirty-four, shared a similar experience: ‘I used to tell doctors and therapists all the time, “You’ve got to make this constant noise in my head stop. I can’t think. I can’t sleep. I can’t get any peace,” but this was always dismissed as anxiety or women’s problems.’ This goes to show that hyperactivity can show up in many different ways – both in ways that are obvious to the people around us and in ways that are hidden away internally.

Since my diagnosis, I know that my hyperactivity is never going to go away – like all aspects of my ADHD, it’s something that I need to learn to work with rather than against. I always make sure that I have something to keep my hands busy, and I try to make sure I do at least 12,000 steps every day so I know that I have an outlet for all that extra energy.

How to better accommodate this trait:

Relaxed cinema and theatre showings are great examples of how we can accommodate hyperactivity. Sitting still for 90+ minutes can feel torturous for hyperactive ADHDers, so showings where movement is encouraged, there are options to either sit or stand, and it’s communicated that it is okay to leave if you need to can be a much more comfortable environment. One example of this was the Village Idiot show at Stratford East Theatre13 in April 2023. Every performance took place in a relaxed environment, where movement in and out of the auditorium was allowed, there was less emphasis on the audience being quiet during the performance, and there was also a separate chill-out room for any audience members that required it. This made the performance much more accessible to neurodivergent audience members – and not only should this be more common in theatres and cinemas, all workplaces would be much improved if the environment allowed for a more flexible approach to focused and interactive work (more on this in Chapter 9: In the Workplace).

The trait:
Constantly fidgeting

What we’re told it means:

We often picture an ADHDer as somebody fidgeting, doodling and being disruptive.

What it actually means and how it might actually show up:

Fidgeting can be a physical manifestation of hyperactivity, as explained above, but it can also tie back to that need for stimulation that we explored when looking at inattentive traits of ADHD. Fidgeting – whether that’s doodling, picking your fingers, playing with your hair or playing with a fidget toy – can be a great way to add stimulation to the task at hand. (You might recognize some of these ways of fidgeting as ways of stimming listed in Chapter 3: Translating Autistic Traits, but it’s important to remember that even though the output of the action is the same, the reasons behind autistic stimming and ADHD fidgeting come from very different places. Stimming is a self-soothing or self-regulating action, whereas fidgeting is a result of hyperactivity and used to add stimulation to a task.)

Whenever I go on a podcast or am being interviewed, I always make sure to have a fidget toy with me. These come in all different shapes and sizes, but my favourite is a Tangle – a wiggly loop of plastic with different joins and bends that can be twisted and turned and manoeuvred in a whole range of ways. Not only does my Tangle help to keep my hyperactive hands busy, but the physical activity of playing with something in my hands also helps to stimulate my brain, which means that it is easier for me to stay focused on the conversation. It can feel slightly strange when you first start using a fidget toy in public (I definitely felt a little self-conscious at first), but I believe that, over time, schools, workplaces and society, in general, are becoming more accepting of fidget toys. Also, if it works for you, you don’t need to worry about what other people think.

How to better accommodate this trait:

At our (un)masked events14 (the community I created for neurodivergent people to find friendship, support and resources), we always include fidget toys in our goody bags so that while people are listening to our panels they have something to help them stay focused. Although they are called toys, these tools can make a huge difference to how children and adults are able to concentrate, so I think it would be sensible for all workplaces, schools and event organizers to offer access to them – surely content whizzy brains are a win-win for everyone? In the absence of that, awareness and understanding that some people might not find it easy to sit still for long periods of time is, as with all awareness and empathy, invaluable.

The trait:
Acting without thinking and having little to no sense of danger

What we’re told it means:

People might think that ADHDers are careless, reckless, selfish or even dangerous with our impulsive decision-making.

What it actually means and how it might actually show up:

Impulsive action can be broadly defined as the inability to withhold from making a response to a stimulus. Inhibition/impulse control is one of the eight executive functioning skills listed earlier in the chapter that ADHDers have a developmental delay with, so we can often end up making impulsive decisions. The part of our brain that sends signals to allow our ‘stop behaviour’ (the thalamus gate)15 is impacted by ADHD, meaning that ADHDers may struggle to control ourselves in the short term or make decisions that benefit us in the long run. Studies have also shown that ADHDers prefer smaller but more immediate rewards to larger, more delayed rewards.

This can show up in a whole host of different ways – from the mildly inconvenient all the way to the downright dangerous:

Adults with ADHD are nine times more likely to end up in prison16 than those of a similar age and background who do not have ADHD.

Adults with ADHD are far more likely than those without to engage in risky financial behaviour,17 such as taking out expensive loans or making impulsive purchases without thinking the implications through fully. 60% of ADHDers said that it directly impacts their financial lives18 because of issues with money management, costing them, on average, an estimated £1,600 per year.

According to a study conducted at Harvard Medical School in 2007, girls with ADHD were almost four times more likely to have an eating disorder19 than those without ADHD.

As you can see, these are all very serious and real impacts of living with an ADHD brain. It can be really difficult, and it’s for this reason that ADHDers are tired of people thinking that it is just a ‘struggle to focus’ or ‘not that serious’ – because, in reality, it is much more impactful than that. I feel very grateful that my impulsivity has never had too serious an impact on my life, but I can definitely relate to impulse shopping and spending. Before my diagnosis, I went through a stage of impulsively booking holidays as a sort of ‘escapism’ from the real world – without ever thinking about if I could afford them, if I was well enough to go on them, or whether I actually wanted to go.

How to better accommodate this trait:

These shocking stats about how the impulsive aspect of ADHD can dramatically impact people’s lives show just how important it is that ADHDers get the diagnosis, support and, perhaps, medication that they need and deserve in a timely manner. Only 11% of adults with ADHD receive treatment20 – which leaves most ADHDers vulnerable, unsupported, and more likely to get themselves into risky situations. Society needs to get better at identifying ADHD in all types of people and at a much younger age so that they can get the support they need – we’ll discuss this more in Chapter 5: The Lost Generation.

The trait:
Mood swings, irritability and a quick temper

What we’re told it means:

I don’t think the emotional side of ADHD is actually mentioned much at all in the media portrayal or limited understanding that society has – it was certainly something that I hadn’t seen mentioned before – but it might lead people to assume that someone is being dramatic, manipulative or unreasonable.

What it actually means and how it might actually show up:

Impulsivity and under-stimulation can lead to feeling impatient and irritable, and ADHDers can also struggle with emotional regulation. In a recent study, around 70% of adults reported problems with anger or emotion21 as part of their ADHD.

ADHD impairs the ability to regulate feelings – anger, anxiety, sadness, or other. The brain’s22 amygdala region handles emotional reactions and decision-making. In most people, a flood of anger or worry tells the amygdala to relay a message to the cerebral cortex. In turn, the cerebral cortex then inhibits emotional response so you can take a deep breath and think things through. In ADHD brains, however, this connection is weak, which means that we can experience sudden emotions without being conscious of where they came from or why.

‘Emotion regulation is a big part of ADHD that has been traditionally ignored,’ says Joel Nigg, PhD. ‘When comparing ADHD brains to those without, we see that the connection between the prefrontal cortex and the reward system has reduced activation, especially in the dorsal part of the prefrontal cortex. This could explain overexcitement, frustration & anger, and inability to respond to delayed rewards.’

This means that ADHDers might have an emotional reaction that seems out-of-sync or out-of-proportion in relation to the thing that caused it, might struggle to calm down once an emotion has taken hold, or might seem insensitive to, or unaware of, the emotions of others.

Another big cause of mood swings in ADHDers is Rejection Sensitive Dysphoria (RSD), a term first coined by Dr William Dodson,23 which explains the way that ADHDers are triggered to feel extreme pain by real or perceived rejection – for example, if they believe that someone is upset with them, that their work isn’t good enough, or that they have let somebody down. It is commonly linked to ADHD, despite not being officially recognized as part of the DSM-5 criteria that we explored in Chapter 2: The Basics. RSD is considered to be caused by both genetic and neurological factors, but we also have to take into account that this extreme reaction to rejection (whether real or perceived) may also be caused by the fact that ADHDers have experienced more failure, rejection and judgement throughout their lives.

It has been suggested that for every fifteen negative comments that a child with ADHD receives, there is only one positive comment,24 and that, by age twelve, children with ADHD receive 20,000 more negative messages25 from parents, teachers, and other adults than their non-ADHD peers. Knowing this, it is not difficult to understand why ADHDers might be more sensitive to or triggered by feelings of rejection.

Because of this, people with RSD are typically very perceptive of new people: ‘[they] quickly scan every person they meet26 and have a remarkable ability to figure out exactly what that person would admire or praise … they are so intent on avoiding the possibility of displeasure from others and keeping everyone happy that they often lose track of their own desires’. For me, RSD means that I will often jump to the conclusion that I am being rejected, when, actually, that might not be the case. For example, if two colleagues or friends were having a conversation and I couldn’t quite hear it, but I just about heard my name mentioned, my brain would automatically think that they must be saying something bad about me, that they didn’t like me, or that I had done something wrong. In reality, it’s just as likely (if not more likely!) that they’d be saying something positive about me, but my brain moves quickly to the perceived rejection without taking this into account.

I think all humans experience this to some degree – it comes from our need to find and belong to our tribe – but the difference with ADHDers is in the frequency with which we feel rejection and the intensity of the way we’re affected by it. Any negative feedback feels like a personal attack, a rejection, and often puts a cloud over that person’s feelings for the whole day. It has been reported that nearly one in three ADHDers say that RSD is the hardest part of living with ADHD.

How to better accommodate this trait:

The key lesson here, as for all these traits and experiences, is to be kind. If you can both a) be careful with the words you use, and b) be patient if someone perceives those words as rejection, then you can make a really huge difference.

—
Recap

Overall, in a similar way to the experience of being autistic, ADHD is built up of a whole load of traits that have a wide range of effects on the lives of the people who experience them – in both positive and negative ways. Sometimes, as in my case, people can experience a combination of the two depending on the situation.

In this chapter, we have explored:

The key traits of ADHD.

How they might show up in somebody’s life.

How and why this differs from what people might expect.

What society can do to accommodate these experiences.

Your takeaway box

Make a list

As with the autistic traits in the previous chapter, it might be worth taking some time to go through each of the traits we have discussed, one at a time, and working out if you feel as though they resonate with you. If they do, you could make a list of the ways that they show up for YOU. We’re all different, which means that we all feel the effects of each trait in different ways – and we might not even relate to some of them at all. You don’t have to experience every single ADHD trait in order to be diagnosed with ADHD, but working out which bits you do and don’t relate to can help you to understand yourself a little bit better.

Learn to forgive

Again, as in the previous chapter, by taking the time to make this list, you might feel as though you can start to forgive yourself for some of the things that you struggle with, some of the ways that you behave, and some of the things that people have judged you for. Remember: you are not a bad person, you are just different.

Reframe your judgements

If you’re reading this as a neurotypical friend or family member of an ADHDer, take some time to think about the ways that you might have previously judged some of the behaviours and traits that we’ve worked through. Chances are, like the majority of society, you’ve been led to believe that lateness and disorganization, for example, are personal flaws, negative things, and signs of laziness or lack of care. In reality, these things are just part and parcel of living as an ADHDer – and things we need to start seeing as neutral, and giving the understanding and support they deserve.

5

The Lost Generation

Recently, there seems to be an increasing number of voices pushing the narrative that ‘everybody is getting diagnosed with ADHD nowadays’ or saying things along the lines of ‘We didn’t have all this autism stuff back in my day!’ These narratives are increasingly prominent across social media and news outlets over the last year in particular, and, since my diagnosis, I seem to notice them more and more. You’ve probably noticed them yourself, or heard comments in passing conversations between family and friends; they might even have impacted whether or not you felt able to speak up about your experiences. Maybe you even believed or thought these things yourself before you started to understand what was really going on.

But in reality, these narratives are extremely dangerous and extremely triggering for neurodivergent people who, after a lifetime of feeling misunderstood, finally have some answers as to how their brains work – and for that reason, I want to dispel these myths in this chapter, by explaining why this seems to be a ‘thing’ right now but that neurodivergence is here to stay, and why that is a good thing.

I really believe that society’s answer to an increase in diagnoses shouldn’t be, ‘Oh my god, everyone has ADHD/autism now.’ It should be, ‘Oh my god, how did we manage to let so many people down?’

In this chapter, we’ll explore:

Slipping through the net – highlighting the different groups of people who are most likely to get missed and why that is.

The shift – understanding why more people might be getting diagnosed now.

The media’s role – how media representation of neurodivergence has fed into late diagnosis.

My experience of late diagnosis as a woman.

Multiply-marginalized people and late diagnosis.

Society’s answer to an increase in diagnoses shouldn’t be, ‘Oh my god, everyone has ADHD and autism now.’ It should be, ‘Oh my god, how did we manage to let so many people down?’

We are a lost generation of people who were never diagnosed when we should have been, when we deserved to be, as children.

Slipping through the net

Take it from somebody who had to drop out of high school, who has never been able to hold down a job for more than a year, who has never been able to maintain friendships and who has been debilitated by their crumbling self-worth their entire life: there is nothing ‘trendy’ about being diagnosed with ADHD, autism, or any other neurodivergence such as dyslexia or dyspraxia.

They are not fads. They are not cool. They are not ‘something that we all have’, and they absolutely are not something that anyone would pretend to have in the hope of garnering some attention. They are disabilities that have very real effects on hundreds of thousands of lives.

The reason that it might seem like ‘everybody is getting diagnosed with these conditions at the moment’ is because there are a huge number of us who had previously slipped through the net and are finally being caught. We are a lost generation of people who were never diagnosed when we should have been, when we deserved to be, as children. This is mostly caused by the fact that the diagnostic criteria for autism and ADHD, and some other neurodivergences, continue to be based on research done predominantly on a very specific subset of people: young, middle-class, cis, White boys. Boys are five times more likely to be diagnosed with ADHD than girls,1 although case numbers are roughly similar for men and women later in life. This means that women and girls are going undiagnosed or misdiagnosed, mostly due to misconceptions around the way that traits show up.

In 1990, only forty children in the UK were receiving medical treatment2 for ADHD, yet ADHD UK estimates that there are now 2.6 million people in the UK who have ADHD3 (694,000 children, 1.9 million adults), which shows just how many people who are now adults have spent their younger years without proper medical care for their ADHD. Diagnostic rates are similarly low across all neurodivergences, with some studies suggesting that only one in twenty autistic women are diagnosed in childhood.4

Not only is this because of the lack of awareness and resources given to neurodivergence in the 1990s, this severe lack of diagnosis was also because of how difficult the diagnostic process was, and still is, to navigate for different types of people. To give you an example of this, when you go through the diagnostic process today, you are faced with endless questions and surveys to assess your thinking style that can be difficult to answer. This one, in particular, was hard to relate to and made me feel as though it was not designed to cater for me:

I like to collect information about categories of things (e.g. types of cars, types of birds, types of trains, types of plants etc.) – Do you Definitely Agree, Slightly Agree, Slightly Disagree, or Definitely Disagree?

This question can be found in the AQ-105 (with AQ standing for Autism Quotient) – the initial pre-diagnostic guide which is used to help medical professionals decide whether or not somebody should be referred to a specialist team for a diagnostic assessment for autism. The AQ-10 was first introduced in 2013, and is a condensed version of the AQ (Autism Quotient)6 which was developed by Simon Baron-Cohen and colleagues in 2001. It is usually the first thing somebody is asked to fill out when attempting to be referred for a medical diagnostic assessment for autism; I came across it online and completed it as part of my Right To Choose application7 with Psychiatry UK.

The examples used, I’m sure you’ll agree, are very much representative of the way that the diagnostic criteria were, albeit probably unconsciously, set up to account for only a very limited number of people. Types of cars, types of birds, types of trains and types of plants are, in my opinion, very stereotypically young, male, middle-class interests. My first reaction to the above question was, ‘No, I don’t collect information about any of those things,’ but then, after further consideration, I thought, ‘Well, that’s probably mostly down to the fact that I am a twenty-four-year-old (at the time) woman and not an eight-year-old boy.’

I might not collect information about birds, cars, trains or plants, but I do:

• Know all the lyrics to all the songs by all my favourite bands.

• Religiously check up on the social media accounts of my favourite creators to ensure that I am up to date with all their latest news, videos and outfits.

• Insist on reading every single book that an author has ever published if I have read one book of theirs that I enjoy.

• Have to own paper copies of every single book I have read, kept in my possession at all times (no lending or book clubs over here).

After digging around further into the diagnostic criteria and hearing the stories of other neurodivergent creators, I was able to decipher that the autistic trait which this question is designed to identify is having special interests (which we explored in Chapter 3: Translating Autistic Traits) – which, as these examples and the ones in the previous chapter about my indie music obsessions show, I definitely do experience. But being able to decipher this from the way that the question is worded required me to do a lot of reading between the lines, which is something that autistic people notoriously find tricky. If I hadn’t stopped to think about the way that the diagnostic criteria are biased (which I’d known thanks to my extensive googling after that initial lightbulb moment), my experience of this trait could have easily been missed, which, in turn, could have affected the score I received on the AQ-10 and therefore affected whether or not I was referred for my diagnostic assessment at all.

If you take a further look into the diagnostic criteria for both autism and ADHD, you will notice subtle but significant biases like the example I shared above dotted all over the place. These biases, when added together, make it really difficult for anyone other than the subset of people whom the questions were designed for, and whom the research was based on, to come away with a ‘score’ that is a true representation of the way that they experience their neurodivergence. Our thinking about autism has historically been based on White cis-boys from affluent families, as these were the people that were under the care of the psychiatrists who first defined autism. Since then, in the mid-1990s, autism researcher Simon Baron-Cohen worsened these biases by introducing the8 ‘extreme male brain’ theory. He incorporated tests of social intelligence and pattern recognition into his autism studies, and found differences between the sexes. He suggested that women tend to perform well in the tests of social intelligence, whereas men tend to excel at following rules and recognizing patterns, and that, since autistic people generally have trouble with the former but do well with the latter, autism could be explained as an ‘extreme male brain’ (which he proposed as his theory in 2002). We now know this to be false and that associating autism with any specific gender could be harmful; people of all genders can be autistic, so associating it with the label ‘male’ (even if that is meant as a male brain rather than a male person) could hold women and people marginalized for their gender back from accessing a diagnosis.

This biased diagnostic criteria then creates a self-fulfilling prophecy – anyone other than cisgender, White boys are likely to find it extremely difficult to get a diagnosis, which means that the majority of people gaining a diagnosis are likely to be cisgender, White boys, which means that society continues to believe that this is the main group of people who have these disabilities.

The skewed diagnostic criteria, combined with the limited societal representation of autistic and ADHD people, means that if you grew up as anything other than somebody from that very specific subset (a young, middle-class, White, cis boy), the adults and professionals around you were not looking for these disabilities in someone like you – or, in fact, even looking for it at all in the way that it presents in somebody like you.

This means that:

Lots of women and people marginalized for their gender have been missed.

Lots of people of colour have been missed.

Lots of queer and trans+ people have been missed.

Lots of people with other co-occurring disabilities have been missed.

Lots of working-class and poor people have been missed due to differences in levels of healthcare and education.

People from different backgrounds, communities, ethnicities and genders are bound to experience life in different ways, communicate in different ways and behave in different ways – which will therefore have a huge impact on the way that their traits of autism and ADHD present, too. It is widely acknowledged by organizations such as the National Autistic Society and the ADHD Foundation that further research is needed into the experiences of these people – and all neurodivergent communities hope that this research can then be used to inform new, more inclusive diagnostic criteria.

As of now, it appears as though autism researchers struggle to acknowledge that although there are, obviously, many common experiences and traits that autistic people share, each autistic person also has their own unique lived experience, which means that these traits and experiences will show up differently in each person. As Emily Katy (she/her),9 autistic and ADHD writer, explains:

How society understands autism stems back to when autism was first ‘discovered’. Kanner is often credited for this with his 1943 paper, and Asperger’s 1944 paper closely followed. Though, we now know that they were not the first. Grunya Sukhareva had published a paper in 1925 describing boys with similar characteristics to both Kanner and Asperger’s samples. But here lies the problem: The majority of the children studied were boys; White, cis boys. Kanner studied eight boys and three girls, whilst Asperger and Sukhareva’s samples were all male. In fact, Asperger even stated that he had ‘never met a girl with the fully-fledged picture of autism’. The research that followed mostly all had male samples, because people believed that girls just weren’t autistic. In 1981, Lorna Wing discussed the lack of recognition of autistic women. Although recognition has increased, we still have the same problem, with 80% of autistic girls being undiagnosed at the age of eighteen.10

Personally, I was diagnosed just before my seventeenth birthday. I do believe being a girl played a part in my autism and ADHD going unnoticed until my mental health deteriorated to the point that someone had to listen. My meltdowns were seen as dramatic, my emotional dysregulation was seen as me being overly sensitive and hormonal, and my special interests were seen as me being clever (because loving books as a girl is socially acceptable – even if rather intense). The pressure to conform socially meant I masked heavily. And so I, like so many others of marginalized genders, flew under the radar. My experiences were not reflected in past research. Thankfully, awareness and understanding is increasing, and there is more neurodivergent-affirming research being done now. Our lived experiences are different, and we need research to explore the wide diversity of our experiences.

Although I focus on ADHD and autism throughout this chapter because of my own lived experience, it’s important that we remember that the neurodivergent community includes so many other types of thinking styles and brains, too – and that no two people with any neurodivergence have the same experiences.

The shift

Naturally, though, as social media has allowed more people to communicate with one another, and more ideas to be spread on a wider scale, more people have been able to discover their differences which might not otherwise have been identified. So, if a lot more people are getting diagnosed with autism and ADHD in recent years, that doesn’t make getting a diagnosis a ‘trend’. It is just a domino effect in which many of the people who have had the conditions their whole lives, and been let down by the system, are finally getting the answers that they have always deserved after becoming more aware and educated about the way the condition would show up in someone like them.

An analogy that I like to use to demonstrate this is that the rates of left-handedness have increased massively over the past 100 years.11 Being left-handed hasn’t ever become a ‘trend’, it has just stopped being punished and started being recognized as a perfectly valid part of being a human. There have always been people that were left-handed, they just either didn’t realize they were allowed to write with their left hand at all, or knew that if they admitted they were left-handed, they would be punished. So as soon as people realized that being left-handed was a ‘thing’ that they might experience and that it was okay to do so, the recorded rates of being left-handed increased. Although these aren’t the same thing, I think this comparison goes some way to show how societal perceptions can play a major part in how people present and understand their differences, and therefore why we are seeing an increase in the number of people being diagnosed with neurodivergent conditions.

So as a society, when we hear about this wave of diagnoses, our response shouldn’t be, ‘Oh my god, everyone has autism and ADHD now.’

It should be, ‘Oh my god, how did we manage to let so many people down?’

You might recognize this quote, as you’ll have seen it at the beginning of the chapter, and hopefully, after reading more, it will make a lot more sense to you. If we consider an alternative scenario, in which the health system was failing to diagnose other conditions for twenty-four years or longer, it is likely that it would be causing uproar and making front-page headlines. But since these disabilities are hidden, and people (women, people marginalized for their gender, and people of colour in particular) learn how to mask them in order to ‘fit in’ with the status quo of a neurotypical world, diagnosing autism or ADHD isn’t taken as seriously. We are not enough of an inconvenience to the people around us for our differences to be identified. As a result, people go years without a diagnosis and are left with a lot of trauma. I, personally, have mountains of unresolved trauma because of the fact that I spent twenty-four years of my life genuinely believing that I was broken, damaged, and a bit of a rubbish person. (We’ll explore this more in Chapter 10: Late Diagnosis and Mental Health.)

I had this damaged perception of myself because I had never been given any answers as to:

Why I couldn’t exist in the same way that everybody around me could.

Why I couldn’t achieve things in the same way that everybody around me could.

Why I couldn’t look after myself in the same way that everybody around me could.

Why I found so many things so much harder than everybody around me.

Why I seemed to be affected by things so much more deeply than everybody around me.

Why I couldn’t maintain friendships in the same way that everybody around me could.

I really believed that all these things were personal flaws – because I had never been aware of any other possibility – when, in reality, I only felt that way because my struggles with neurotypical conventions had been ignored for so long. My questions and struggles were the result of being let down by a system that had the responsibility for protecting me. Although I had the unconditional love of my family, there was only so much they could do to support me without understanding why I found it so difficult to navigate everyday life.

Getting my autism and ADHD diagnoses at the age of twenty-four – my lightbulb moment – was the first time that I could start unlearning all those things about myself (that I was broken, that I was damaged, that I was incapable, that I was ‘too much’) and learning to forgive myself for being different. I know that so many people who receive a late diagnosis feel the same way, too. Although going through the process of getting a diagnosis wasn’t easy, and although I’m still navigating it to this day, I know that I couldn’t have started on that road without the diagnosis. For this reason, getting a diagnosis can often be one of the most pivotal moments in many neurodivergent people’s lives – and it’s sad that people are minimizing that by labelling it a ‘trend’.

When any of us hear narratives along the lines of ‘everybody has ADHD or is autistic now’ – or any narrative other than one that is at the very least empathetic towards our years of trauma, being misunderstood and being let down by the system – I think it is really important that we fight them at all costs. We should be celebrating the fact that more and more people are finally getting the diagnoses that they deserve – not deterring people from going after them.

The media’s role

Another important factor in so many people going undiagnosed for such a long time is the very limited representation of autistic and ADHD people in the media. This time two years ago, if you had asked me to picture an autistic person, my imagination would probably have gone as far as somebody that looked like Rain Man’s Raymond Babbitt – a socially awkward White man on the brink of genius with unusual skills like being able to count toothpicks on the floor. Similarly, if you’d asked me to picture somebody with ADHD, I would have been imagining a naughty little schoolboy who was rocking backwards and forwards on his chair and causing chaos in the classroom. I had been subconsciously taught by portrayals of neurodivergent people in the media that ‘autistic’ was synonymous with a ‘socially awkward, rude, White man on the brink of genius’ and that ADHD was synonymous with ‘a young boy running in rings and struggling to take a breath between their words’. I was absolutely not alone in my misconceptions; they’re the ones that, now I am diagnosed and speak about my conditions publicly, I come face-to-face with time after time.

In fact, these misconceptions, which are hugely common thanks to the media’s limited representation of neurodivergence, are probably a huge part of the reason that it took me until the age of twenty-four to be diagnosed, despite showing numerous signs that are glaringly obvious in hindsight. I never considered, and the people around me never considered, that I might be autistic or have ADHD. This was probably mostly because we had never seen anyone that looked like me, acted like me, or had anything in common with me who had those labels assigned to them.

Neurodivergent representation across the media (by which I mean everything from fictional TV series and movies to music, radio, press, sports and even reality TV) is extremely limited. The representation our community does get is predominantly made up of:

Shows opting to avoid outright labelling of autism, and giving the characters a combination of ‘quirky’ (a.k.a. autistic) traits.

Using neurotypical actors to play autistic characters, which feels a lot to me like appropriation.

Including autistic characters or actors but from the same subset of people discussed earlier in this chapter – cisgender, White men – which reinforces that stereotype.

Shows like Love on the Spectrum which used autistic people as a form of entertainment while infantilizing and dehumanizing them, and suggesting that they needed to ‘learn from’ neurotypical people.

Over the last year, the neurodivergent community have started to get a little bit more media representation – including Elliott Garcia voicing an autistic train in Thomas the Tank Engine,12 Chloé Hayden playing Quinni,13 a queer autistic woman, in the Netflix series Heartbreak High, and celebrities such as Matt Haig, Dr Alex George, Fern Brady, Nadia Sawalha, Christine McGuinness and Melanie Sykes sharing their real-life experiences. It really cannot be underestimated just how huge this is – both for those people individually and for the neurodivergent community as a whole. I am confident that the introduction of this representation will have a life-changing effect on hundreds of thousands of neurodivergent people, showing them that it’s okay to be different and that their matter-of-fact communication, sensory sensitivities and lack of eye contact are nothing to be ashamed of.

That being said, there is still so much work to do. Although it is fantastic that authentic and positive neurodivergent representation is starting to appear in the media, we need to ensure that it is inclusive and reflective of a wider range of neurodivergent people – people of all genders, races, sexualities and backgrounds.

We need neurodivergent women on talk shows, we need neurodivergent people of colour on soaps, and we need trans neurodivergent people in movies. We need young neurodivergent people in the spotlight, and we need older neurodivergent people in the spotlight. We need to see people with higher support needs, and we need to see people with lower support needs – and we need to highlight that those support needs might change from day to day. We need to see non-speaking autistic people, and we need to see hyperverbal autistic people. We need neurodivergent representation to actually be representative of the whole neurodivergent community. As we’ve explored earlier in this chapter, being neurodivergent does not have a ‘look’. It is not confined to one particular subset of people. Neurodivergent people are as diverse as people in general – and, thus, neurodivergent representation in the media needs to be reflective of that. We need to bring more neurodivergent people into the public eye, and we need those people to represent a more diverse range of neurodivergent people – of all neurodivergences that fall under the neurodivergent umbrella.

This need for representation is one of the things that I consider most when doing my work. When I am speaking on stage at events or sitting in front of a camera, I remind myself just how important it is that I use my platform to show up authentically as an autistic ADHDer, by:

Proudly using stim/fidget toys and sensory aids like noise-cancelling earplugs.

Not worrying about making eye contact.

Communicating in ways that are unmasked and feel authentic to me.

Showing up as an unmasked Ellie can feel scary because, ultimately, I know (and my internalized ableism often reminds me) that the more unmasked I become, the less ‘palatable’ I might be to other people. I sometimes feel as though as my differences become more visible, they become more obvious, which might make people feel uncomfortable if it is not something they have been exposed to before, and might therefore limit my ‘success’ in getting my message across, my opportunities, and essentially my career. It’s something I battle with a lot, and it feels tricky to navigate the knowledge that my personal values of unmasking and accepting differences aren’t always an accurate representation of the acceptance of the society we currently live in. However, I try to remind myself that the whole point of the work I am doing is to open up conversations around neurodivergence and remove the stigma associated with it, that it’s not fair to hold myself to standards of masking that I wouldn’t ever wish upon anyone else, and that, by advocating for my own needs and being brave enough to unmask my own differences, I am helping to pave the way for more and more neurodivergent people to do the same.

I also try to show up in places where people who aren’t necessarily aware that they are neurodivergent or looking for content about neurodivergence can find me. I often remind myself that if five-year-old, ten-year-old, or fifteen-year-old Ellie had seen the twenty-five-year-old Ellie of today on her favourite TV programmes, in her favourite magazine, or on the cinema screen, she would almost certainly have arrived at her lightbulb moment of diagnosis a whole lot sooner – and been a whole lot happier in herself in the process. I’d love to play a part in other people finding their own answers and, therefore, their own happiness – and I hope that after reading this book, you can see that you can, too.

Women and late diagnosis

I think it’s crucial that, as part of this chapter, I speak of my experience as a neurodivergent woman and highlight that, in my opinion, so many obvious signs of my neurodivergences went unnoticed simply because I was a little girl and not a little boy. In 2020, iNews reported that only one in twenty autistic women were diagnosed in childhood.

One of the examples of this that I speak about the most is one that I briefly touched on in my introduction, an interaction between my nursery teacher and my mum when I was three years old.

I am an August baby, so I was always one of the youngest children in my year group throughout my years in education. In the summer of my final year at nursery school, when I was about to transition up to primary school, my nursery teacher pulled my mum aside for a conversation. I was three years old at the time, and most of the other children in my class were four.

The teacher explained to my mum that, academically, I was definitely ready for the transition up to ‘big school’. She noted that I was doing really well with my speaking and numerical skills and showing signs of being a very intelligent child. However, she went on to explain that my social skills weren’t quite up to the same standard, so my parents might want to consider holding me back a year. She explained to my mum that the staff at the nursery had tried to encourage me to socialize with the other children in my class and to begin to form friendships with them but that I was simply not interested. All I wanted to do every single day was sit on exactly the same chair, at exactly the same table, in exactly the same room, doing exactly the same activity of painting, in my own little world and independently from all the other children.

After this conversation, though, it was decided that I was probably just slightly shy because I was the youngest in the year group. Both my parents and the teachers were sure that it was nothing to worry about, that my social skills would develop with time, and that the best option was for me to transition to primary school as planned.

If you stop to think about this interaction and replace three-year-old Ellie with a three-year-old Elliot or a three-year-old Ethan, you can probably imagine that the outcome might have been slightly different. I think that had the conversation been about a three-year-old boy who had limited social skills, was showing signs of being very intelligent and had a tendency to stick to a repeated routine, my teachers and parents would have been a lot more likely to consider that I might have been showing autistic tendencies. But instead, because I was a little girl, this didn’t even come into question – my differences weren’t considered to be traits or symptoms; they were seen as ‘quirks’ or personality traits.

Multiply-marginalized people and late diagnosis

I think it is crucial that I also use the space within this chapter to highlight the biases that other marginalized people face when trying to gain a diagnosis. Although, as we’ve explored, research on multiply-marginalized autistic people is seriously lacking, there are plenty of statistics that show us just how much these people are being let down:

Studies have shown that Black and Hispanic children continue to be less likely to be identified with autism than White children.14 These differences suggest that Black and Hispanic children may face socioeconomic or other barriers that lead to a lack of or delayed access to evaluation, diagnosis, and services.

A report by the National Autistic Society in the UK found that autistic people from Black, Asian and minority ethnic (BAME) communities face additional barriers to accessing diagnosis and support.15 The report found that BAME autistic people were more likely to have their autism misdiagnosed or go undiagnosed than White autistic people. They were also less likely to receive appropriate support and services.

Emerging research points to the likelihood that people who are both trans and autistic may be even more likely than cisgender women to go undiagnosed.16

I am not the right person to speak on these issues, and I would like to point out here the immense privilege that I know I hold as a White, conventionally pretty (more on this in Chapter 8: Ableism and Pretty Privilege), economically supported woman. Although the system did let me down, it consistently fails so many others in a far more significant manner. I would like to pass the mic to some other multiply-marginalized neurodivergent creators whose content has taught me so much and is hugely insightful, and who I highly recommend that you check out and support. Here are some of their thoughts about their own experiences:

I was often labelled ‘mad’ by doctors due to previous mental health conditions that were listed on my records, and this led to me not seeking a diagnosis for a long time due to fear. I also present as female, which means that I don’t always feel as if doctors are listening to me. My physical condition also means that access into buildings where appointments take place isn’t always easy!

– Eliza Rain (they/them) – @disabled_eliza – disabled LGBTQ+ content creator17

Growing up, I always struggled with my mental health, but I didn’t get diagnosed with autism and ADHD until my late teens. Being a young person of colour, I always felt I had to work harder and be the best possible version of myself. I haven’t always had access to the support I’ve needed, but luckily that has changed since being at university.

– Mohammed ‘Abz’ Abby (he/him) – @itsabzzy – One Young World ambassador and podcaster18

Everyone has their own unique experiences of discrimination and inequalities, so we must consider everything and anything that can marginalize people as a whole – gender, race, class, sexual orientation, physical ability, etc. As a Black woman with ADHD and dyspraxia, I have experiences that many women relate to, but I also face experiences that are unique for Black women, who have to deal with discrimination and structural racism. Black girls are more likely to experience adultification in school and in their life, which means that non-compliant behaviour may be viewed as a disruption and threat, rather than a sign of ADHD. Black women are often misdiagnosed with PTSD, bipolar disorder and anxiety. These experiences highlight the lack of cultural sensitivity practitioners often have in understanding Black women’s nuanced experiences.

– Abigail Agyei MBE (she/her) – @abi_agyei – neurodiversity advocate and TEDx speaker19

Firstly, I am seen as a woman, and misogynistic research and knowledge hindered me from the start. But what I think impacted me the most was my queerness and gender identity. I was very fearful of prejudice, transphobia, and potentially being dismissed because of any bias that the assessor had. I’d heard stories of people being told, ‘You’re not autistic, you just have gender dysphoria’ and other nonsense. I very nearly made a phone call to take myself off the waitlist due to fear. It’s important to remember that it’s not just the system that makes it hard to get diagnosed, it’s actually fearing for your safety and security, so you protect yourself by not even trying to get a diagnosis in the first place.

– Ella Willis (they/them) – @ellawillis – queer and neurodivergent digital creator20

For me, I felt it was really important to make it clear that I was transgender and assigned female at birth when having my assessment. I did this because I knew that late diagnoses were more common for AFAB people, and that the experiences I had fitted more with a ‘traditionally AFAB’ diagnosis. I also feel that being Queer and Trans has given me a level of introspection which connects to my ability to identify and be identified as neurodivergent. On a personal level, it’s allowed me to look at my own experiences with a new lens, but it’s also given me the freedom and confidence to own my diagnosis. Being Queer or Trans means stepping outside of “the norm”, it means challenging social expectations. That feels very close to neurodivergence.

– Max Siegel (they/he) – @theyrequeer –
transgender speaker, DEI consultant and influencer21

Overall, we can agree on one thing – we’re all different! There is no one way to be neurodivergent, and the neurodivergent community are as diverse as humans in general. Those of us who are marginalized for our gender, race, sexuality, or any other part of our identity have previously been missed – but we’re now learning that just because our experiences might not match the textbook definitions of these disabilities, that doesn’t mean that our experiences aren’t valid or worthy of diagnosis, understanding and support.

—
Recap

In this chapter, we have explored:

The different groups of people who have previously slipped through the net and why that is.

The shift that is currently happening and why more people might be getting diagnosed now.

The media’s part to play in leaving so many neurodivergent people undiagnosed, misdiagnosed and unsupported.

My experience of late diagnosis as a woman.

Multiply-marginalized people and late diagnosis.

Your takeaway box

Be yourself

One of the most powerful things you can do to help increase representation is actually very simple – just BE YOU! If, whenever you feel safe and able to do so, you proudly and authentically show up as a neurodivergent person (whether that’s online, in your workplace, in your friendship group or wherever you feel comfortable), you are helping to replace society’s narrow-minded view of what a neurodivergent person looks like or acts like with a more accurate representation. Showing up as your true, authentic, deeply caring self, and showing that neurodivergent people come in all shapes and sizes, is a significant act for which you should always feel proud! (But a friendly reminder that if it isn’t safe for you to unmask or you don’t feel comfortable doing so just yet, that is absolutely fine too.)

This is also important if you’re a neurotypical reader who wants to be a better ally. Accepting and understanding the differences in those around you and providing a safe and comforting relationship or environment in which they can unmask can make a huge difference.

Pass the mic

Another meaningful action that we all need to take part in is passing the mic – ensuring that we help raise a diverse range of multiply-marginalized neurodivergent voices. Share the experiences of and amplify the voices of a whole range of neurodivergent people – including neurodivergent people of colour, LGBTQIA+ neurodivergent people, neurodivergent people with co-occurring disabilities and neurodivergent people with a wide range of support needs – so that their stories can be heard, too. You can do this by following neurodivergent creators, supporting and sharing their content, and by reading books written by a diverse range of authors.

6

What Is Masking?

By now, you’re probably familiar with the term ‘masking’ – and, as the title suggests, this is an incredibly important topic to me. So much so that the title of this book is also the name of the community that I set up in 2022, to support fellow neurodivergent people to come together in solidarity to learn how to unmask together, find other like-minded friends, and discover what being our true selves really means. Masking is widely spoken about and is often a significant factor in so many autistic people and other neurodivergent people going undiagnosed for such a long time. But first of all … what actually is masking?

Put simply, masking is when an autistic (or otherwise neurodivergent) person attempts to appear non-autistic (or neurotypical) by covering up their autistic (or neurodivergent) traits. It was initially and is most commonly used to explain specifically the autistic experience, but it has also been adopted by other neurodivergent communities in order to explain their similar experiences of covering up their neurodivergent traits in order to appear neurotypical. In this chapter, I’m going to focus mainly on the autistic experience of masking, but the general idea of covering up our true selves in order to survive and fit in can also be true for all neurodivergent people. My mission when posting content online and speaking on stage is to show neurodivergent folks that they don’t need to mask their true selves any more, and to teach society to be more accommodating and understanding of differences – to even learn to celebrate them – and that’s what I want to convey in this book, too.

Masking can show up in several different ways; it might be:

Camouflaging: Covering up or obscuring autistic traits, tendencies or characteristics in order to ‘blend in’ to a neurotypical social environment.

Mimicking: Copying the behaviours of those around you.

Over-compensating: Actively counterbalancing your natural traits/behaviours by using specific strategies to maintain the appearance of functioning in the same way as everyone else.

Camouflaging refers to covering up your unique traits and struggles as a disabled person; compensating refers to crafting little workarounds and hacks that help you get your needs met without needing to ask for support. Autistic people might employ a variety of these methods throughout their lives so that they can survive, fit in, and remain ‘under the radar’.

In this chapter, we’ll explore:

What is masking?

Why do autistic and neurodivergent people mask?

The negative effects of masking.

How we can begin to unmask.

A bit about the (un)masked community.

Nobody had any reason to suspect that I was different, or that I was wearing a mask, because, by nature, the mask was doing such a good job of hiding what was really going on.

When masking, we’re covering up every aspect of the autistic experience – and being autistic affects every aspect of life.

What is masking?

As we explored in Chapter 5: The Lost Generation, a lot of the reason that I, and so many other autistic people, spent such a long time undiagnosed is because medical professionals, teachers, and society, in general, weren’t looking for autism in people that looked like me, thanks to research and diagnostic criteria that were based mostly on young, White boys. I believe that another main reason for this is that the people around me couldn’t possibly have noticed that I was different – because I never allowed myself to be.

I wasn’t showing up as ‘Ellie, someone whose brain works in a different way’; I was, throughout the course of my life, showing up as a clone of all the other people around me at the time. If I wanted to survive, fit in, and avoid being ostracized, I didn’t have a choice but to appear as though I was coping, working and existing in the same ways that everybody around me was. Because of this, I just worked extra hard behind the scenes to build this façade – this mask – that allowed me to go under the radar as an undiagnosed autistic ADHDer for such a long time. Nobody had any reason to suspect that I was different, or that I was wearing a mask, because, by nature, the mask was doing such a good job of hiding what was really going on.

This mask covered a whole range of things. It ranged all the way from simple things like forcing eye contact (even when it felt awkward and uncomfortable) because I’d always been told that it was the polite thing to do, through to never realizing that supermarkets were overstimulating to me and so forcing my way through the clashing sounds and bright, fluorescent lighting, to then have a ‘panic attack’ a couple of hours or days later, seemingly out of nowhere. The mask ranged from practising my facial expressions in the mirror ahead of birthdays and Christmas so that I could make sure I was showing everyone just how surprised and pleased I was with my presents, to planning and practising scripts for conversations ahead of time to make sure I wasn’t left with any awkward silences while at the hairdresser’s or when meeting someone new. It included forcing myself not to speak too much over and over again about my favourite hobbies or music (which I now know to be special interests) because I could tell that people got bored or annoyed when I did, and using unnatural tones when I was speaking so that I didn’t get accused of being rude or blunt when speaking in the way that felt most natural to me.

I recently came across a tweet from the account @fochti that summed up my thoughts on masking perfectly: ‘Autistic masking is like doing 24/7 customer service:1 you say things in a scripted way that feels fake and unnatural to you, are overly friendly and perform everything according to expected protocol, so that the people in your life don’t cancel their friendship subscriptions.’

Dr Tony Attwood, an Australian psychologist, has written about the way that autistic children often quietly observe what others are doing,2 and then go away to practise these behaviours in private before they are confident enough to re-enact them in social situations. The behaviours often mimicked include gestures, tone of voice, and mannerisms.

For me, while undiagnosed, some of the masking that I was doing (like forcing eye contact and surviving my way through an overstimulating supermarket) was subconscious; I had become so used to doing it that I didn’t even realize that I was making an effort to do so. Some of the behaviours, however, were (and still are) very conscious – like taking my time to plan for conversations beforehand because I knew that I wasn’t able to make small talk in the same way that other people seemed to be able to. When it came to these conscious behaviours, I often wondered whether everybody else was spending as much time practising or morphing and moulding themselves as I was, and that that was just a part of life, or if it was just me that needed to do those things because I was broken or damaged in some way. Looking back, I feel as though I have been masking for as long as I can remember, but that doesn’t mean to say that throughout that time, I was aware that masking was what I was doing. I didn’t know that I had any autistic traits to mask, but I was aware that I was different, so I did my best to act in ways that other people did because I had learned that doing so meant that I got a much more positive response from the people around me than when I was being my natural self.

Since getting my diagnosis and having conversations about masking, I have gathered that most neurotypical people seem to think of it as a kind of social performance; they think we stick on this mask to fit in with the people around us. This is true, including in the ways mentioned above, but masking is actually so much broader than social behaviours, too. Most autistic people have to mask everything about ourselves: from our sensory needs, to our tone of voice, to the way that we understand and process information, to our specific or limited diets, to the fact that we need more rest than most people, to the clothes that feel comfortable for us to wear – and on, and on, and on. When masking, we cover every aspect of the autistic experience – and being autistic affects every aspect of life.

Masking isn’t something that stops as soon as you get diagnosed, either. I remember when I first got my autism diagnosis and felt this initial joyful wave of relief, thinking, ‘Ah! I can finally be myself!’ I assumed that because I had a diagnosis that I felt comfortable sharing, the majority of my unmasking journey was done, finito, mission complete. In reality, though, I still, to this day, mask to a really high degree. I can count on one hand (with at least a finger spare) the number of people who get to see me in a 100% unmasked state. A slightly larger group – friends and wider family – sees me in a 50/50 state, where I behave more like myself but still mask things like my tone of voice and the topics I speak about. Those outside of that circle – people who only know me online, people I don’t know personally, and the rest of the world – still get a very highly-masked Ellie who alters her behaviour, forces her way through social situations even when her battery is empty, and suppresses stims. And I’ve found that my unmasking is an ongoing process, too. When you consider that I had spent twenty-four years being completely masked and learning these behaviours and tendencies, it’s quite understandable that I wouldn’t wake up one morning, reborn into a completely different, unmasked person overnight! Cassidy and colleagues found that 89% of autistic women and 91% of autistic men in their sample study attempted to camouflage (or mask)3 – which shows how many of us, even once diagnosed, use this skill to remain safe. Interestingly, they also noted that women seemed to mask in more places, more often, and for longer periods of time, which might help to explain why women and people marginalized for their gender tend to go undiagnosed for so much longer than men.

It’s also important to point out here that, just as autism itself is a spectrum, the amount that different autistic people mask can vary, too. I am what is considered a high-masking autistic person, but other autistic people might not be able to mask in the same way as me. This could be for various reasons, including if they have higher support needs, are non-verbal or non-speaking, or have co-occurring learning disabilities. As much as masking is dangerous and damaging, it is a privilege. Yes, it is exhausting to morph and mould yourself to appear non-autistic and remain safe, but at least you have the option to do so.

Below is a list of some common ways that autistic people might mask. It is not exhaustive, and it’s important to remember that autism is a spectrum. We all experience things in different ways and, therefore, mask them in different ways, too:

Forcing eye contact when speaking to somebody or using counting techniques to measure how long you ‘should’ be making eye contact for.

Wearing an unnatural smile to stop people asking you what’s wrong when you wear a more comfortable, natural expression.

Making small talk about things like the weather, even when it doesn’t feel interesting or natural.

Softening statements with phrases like ‘if that makes any sense’ or ‘I might be wrong’ because people have told you you’re too arrogant.

Suppressing physical stims such as flapping your hands by sitting on them to keep them still.

Rehearsing fake conversations ahead of time to prepare for how you might react or what questions you might ask.

Changing your tone of voice to sound more bright or chirpy.

Laughing at a joke even when you don’t understand it or find it funny.

Pretending to understand instructions or what you need to do when really it doesn’t seem clear, but you don’t want to ask for clarification again.

Keeping quiet about the fact that sensory stimuli are causing you distress or pain because you don’t want to seem needy or dramatic.

Studying what other people like systematically so that you can learn more about it and ask them about it to create a bond.

Copying other people’s accents, mannerisms or tone of voice.

Picking up phrases which other people use and adding them to your own vocabulary.

Learning what phrases and expressions like ‘break a leg’ mean and when to use them, even if they don’t make sense to you.

Pretending to be very confident and extroverted when really you would prefer to keep quiet.

Making a conscious effort not to talk too much about your special interests or subjects you think other people would deem ‘boring’.

A 2019 study by Laura Hull et al. recorded some of the experiences of autistic people who mask:4

I try to copy socially successful people by imitating their speech and body language and trying to understand their interests. (Male, 71)

I look in people’s eyes when I first meet them [ … ] even though I wouldn’t naturally because I know you’re supposed to. (Female, 26)

I say as little about myself as possible, as the more I say, the more likely it is that I say something inappropriate OR give away too much information about myself, which can then be used against me. (Other, 31)

Overall, masking includes using many different techniques to cover up or draw attention away from many parts of our autistic experience. It is something that can be both conscious and unconscious and that many autistic people – but not all – are doing a lot of the time.

Why do autistic and neurodivergent people mask?

Put simply, the reason that autistic people mask is that we have to. The society that we live in – as well as being built around structures of patriarchy, White supremacy and misogyny – is set up to suit neurotypical, non-disabled people; from the way that we’re expected to work in brightly lit, noisy offices, to the way that we have to sit silent and unmoving while at the theatre or in cinema audiences. Autistic people, and neurodivergent people more generally, can therefore face judgement, stigma and ostracization when unmasking – and this also intersects with the other types of oppression which we covered more in Chapter 5: The Lost Generation.

In a 2016 survey of college students’ attitudes towards autistic people, psychologists found that people associated autism with introversion, social withdrawal, and having a5 ‘difficult’ personality. To avoid appearing this way and facing the backlash that this would entail, autistic people often change themselves, people-please and play out a false persona. In the words of Dr Devon Price, ‘For fear of becoming a Sherlock,6 we morph ourselves into Watsons: agreeable, docile, passive to a fault, always assuming that the larger personalities around us know what’s best.’

I think it’s essential to point out that, a lot of the time, masking isn’t a conscious choice made by the autistic person, and it definitely isn’t an ill-intentioned pretence or them being fake; it is the result of being or living in an environment that is not accommodating to their needs. If a tree in a forest grows on a cliff edge, for example, it will grow at a ninety-degree angle to get the sunshine it needs to survive; similarly, if an autistic person grows up in a world built for neurotypical people, they will mask in order to have their needs met and stay safe. The tree grows in a way that can be dangerous for it in the long term and unconventional compared to how it is supposed to grow, but in a way that is essential for its survival in the short term.

Even though we might realize that masking is tiring, exhausting and damaging, it is constantly rewarded (whether consciously or unconsciously) by the people around us. Even before my diagnosis, I often used to say to my mum that I didn’t want to go out, go to school, or go to a big family event because I was ‘tired of pretending’, but I knew (or felt) that I couldn’t just do what I felt like doing, and go out into the world and sit in a ball crying, or miserable, or without talking to anybody. When I masked, though, this false personality won people over, was liked, and was often praised. One ex-partner who knew how much I felt I struggled socially used to frequently reassure me how great I was with people and comment on how all his friends and family I’d met had loved me so much. When I heard this, my internal thoughts were, ‘Yes, because I’ve perfected that first thirty-minute performance … It’s once they actually get to know me that people seem to change their minds.’

Ableism is a form of discrimination or prejudice against disabled people, based on the incorrect belief that disabled people are inferior or less capable than non-disabled people. It involves the marginalization, stigmatization, and exclusion of disabled folks in many aspects of life, including education, employment, social interactions, and accessing support. Ableism can show up through stereotypes (like that disabled people are ‘lazy’), misconceptions (like feeling sympathy towards disabled people), or the denial of rights and opportunities (like unemployment). All these things ultimately hinder disabled people from being able to fully participate and be included in society. The oppression caused by ableism also intersects greatly with other systems that marginalize people, including the patriarchy, heteronormativity, and White supremacy. This intersectionality means that people who are multiply marginalized may need to mask more often and in more specific ways to keep themselves safe and, importantly, might not have the privilege of being able to unmask. A scary but very real example of this is that a Black autistic man might not be able to openly unmask physical stims such as flapping his arms or banging his head against a wall, as, due to anti-Blackness rhetoric, these actions might be mistaken as being threatening or violent, which could cost him his safety, his freedom, or even his life. Tiffany L. Hammond, also known online as @fidgets.and.fries, is a content creator and the author of A Day with No Words. She is a Black autistic mother of a Black autistic son and speaks candidly and openly about this. In an Instagram post, she shared: ‘I can’t just hide certain stims because it “looks weird”, I have to hide them because it looks weird but also threatening and I am now unemployable and most often, a poor reflection of the whole of Black people. I further cement the stereotypes placed upon my people. I can literally make it worse for all of us behaving the way I do. The one affects the many. We are seen as a collective.’ This important nuance reminds us that, although masking is harmful, as we will explore further below, it is also a necessity for many people – especially those who are harmed by multiple systems of oppression.

The negative effects of masking

As we’ve explored, masking is a necessary tool to keep ourselves safe and, for most of us, it may have been one of the tools that have got us to where we are today. Having said that, it’s important to remember that just because a strategy we used was once helpful, doesn’t mean it’s the best option for our lives now. Masking is tiring: studies have shown that masking uses up valuable energy resources7 that could otherwise be used elsewhere, and in other studies that have interviewed autistic people about their masking, many participants reported severe emotional consequences, including exhaustion.8

In a 2019 study on autistic burnout (when an autistic person experiences chronic exhaustion, loss of skills, and reduced tolerance to stimulus), one participant explained the following: ‘The metaphor I use is that long-term camouflaging and masking leaves behind a kind of psychic plaque9 in the mental and emotional arteries. Like the buildup of physical plaque over time can result in a heart attack or stroke, the buildup of this psychic plaque over time can result in burnout.’

On top of this, multiple studies have found increased masking associated with increased depression, anxiety, and other mental health challenges. A recent study even found correlations between increased masking and suicidality.10

Imagine that every second of every day, not only are you doing the work that you need to do, or having the conversations that you’re having, or doing all the other things that humans have to do, but each moment, you’re also monitoring and altering your body language, tone of voice, choice of words, the topic of conversation, suppressing your body movements, and internalizing your sensory struggles. That is a lot of extra energy to be using all the time.

For a neurotypical person, a chat is just that – a quick conversation, maybe an introduction to each other, maybe you’re deciding on something. But for me, ‘just a chat’ can take more energy than the hours of training I often deliver at work. When we have ‘just a chat’, I have to navigate masking, scripting, social cues, knowing when to speak, eye contact, auditory processing, sensory input, and under-stimulation … all at once. I’m not saying we can never have a chat, but neurotypical people need to be more aware of the exhaustion and anxiety that it can cause us. Sometimes, a text, voice note or email is the way to go.

– Charli Clement (they/she), autistic, ADHD, and chronically ill speaker, author and creator11

I’ve never cared about being ‘normal’, but I spent two decades unknowingly constructing a mask to blend in and survive in a neurotypical, capitalist world. Despite the constant effort I put into making eye contact, laughing at the right times and holding back parts of myself, it never really worked. I still got singled out, isolated and bullied, and I didn’t know why it was happening. The stress of masking so heavily for so long took a huge toll on my relationships, career and health. Unmasking wasn’t really a choice – I masked until I absolutely couldn’t any more.

Since starting to deconstruct the mask, life has been very different. I’ve had to get to know myself again, and I like this version infinitely more than the masked version. Though there are plenty of hard days, most days are more colourful, more authentic, and so much happier. I have lovely friends, I’ve embraced my special interests, and I’m better connected with my body, my emotions and my surroundings than ever before. Masking was a tool that helped me cope and survive growing up, and I’ll always be grateful for what it gave me, but I’m excited about what the future looks like getting to be myself and experiencing autistic joy and acceptance every day.

– Milly Evans (they/she), autistic and ADHD sex educator and author of Honest: Everything They Don’t Tell You About Sex, Relationships and Bodies12

I spent almost three decades of my life not knowing I was neurodivergent. Even though I’d been struggling my entire life, I’d been masking just as hard. I’d come up with countless systems to ‘hack’ my forgetful brain. I’d eat the same thing every day for years. I’d get home from working a stressful agency job and head straight to the gym before getting home and dancing for hours in my room. All these things were accommodations, or self-regulation or stimming – and I didn’t even realize it.

Not all my coping mechanisms were healthy, though. I’d mask my debilitating social anxiety with copious amounts of alcohol. I’d constantly vape, masking the beating drum of always-on anxiety with nicotine. Sometimes the mask would slip, and I’d swear and beep the horn when someone cut me off while driving. I’d snap and get into meaningless arguments with partners at the grocery store, not realizing I was incredibly overstimulated. Time after time, I felt misunderstood, lonely, and broken.

Even after discovering I was an autistic ADHD’er, it was too late to magically drop the mask and be my authentic self. After three decades of morphing, assimilating, and adapting, I didn’t know where the mask ended, and I began.

– Paff Evara (they/them), Black, queer and neurodivergent creator and founder of Take Up Space13

How can we begin to unmask?

The first step to unmasking is realizing and accepting the fact that you are autistic or neurodivergent – and that means realizing and accepting the fact that you are disabled. That’s a pretty big shift, but, in my opinion, one worth making. While autistic people, generally, are much more vulnerable to anxiety and depression, the more positive their own autistic identity is, the better studies have found their self-esteem to be.14 As I mentioned in my introduction, getting my diagnosis was a lightbulb moment that really prompted me to rethink how I’d previously felt about myself, experienced the world, and interacted with others. In some of my talks, I’ve explained this feeling using the following analogy:

Imagine growing up in a world where everybody functions using a Windows operating system. The world is designed with Windows in mind; all the programs you need to use to live and work are created for Windows, and all the operating guides for life are written for Windows, too. When you look at the people (or the computers, if we’re really going for the analogy) around you, everything seems to be running perfectly smoothly for them. They’ve got all the correct software downloaded, they’re whizzing through everything they need to achieve, and everything seems to be going to plan.

For you, though, this doesn’t seem to be the case. You keep trying to download programs, but they crash at the last moment. When you search for something, all you get is Error 404, and when you try to read up in the operating manuals, it feels as though everybody else must be reading some invisible ink you’re unable to see. You’ve never been given any plausible explanation for why Windows doesn’t work for you, though; as far as you’ve been made aware, you’re just the same as everybody else. But in reality, deep down, you know that you’re not. You’re not the same. You try your best to copy what the other computers are doing and tweak and change your systems to better suit their programs, but it never quite works, and you’re often left overheating or crashing completely.

Then one day, after many years of these struggles, and after many years of truly believing that you were broken, that you were damaged and that you were a bad person, somebody comes along and says, ‘Hey, have you ever considered that you might just be a Mac?’

And suddenly, it all makes sense.

There was nothing wrong with you as a Mac – you were, in fact, a perfectly good Mac. You’d just spent your whole life trying to live the way all the Windows PCs were living, which obviously hadn’t suited you. But now, with your new insight, you could go off, meet other Macs, and run Mac programs – and realize that you were never broken; you were just trying to run programs that physically weren’t designed for your operating system. You were never damaged – you just weren’t able to process the coding that you were expected to. You were never a bad person – you just didn’t have the right information to build up an accurate picture of yourself.

If we replace being a Mac with being a neurodivergent person, we can see that finding out about the way your brain works (however late that might be) can be an invitation to finally start trying to live more authentically. On discovering that we are autistic (or otherwise neurodivergent), we can begin to learn to forgive ourselves for being different. We can start to see that we were never ‘a bitch’; we just naturally communicate in a more concise and monotonous way than most people. We can see that we were never selfish; we just operate differently from the people around us, so it can be hard for us to see things from their point of view. We can see that we were never dramatic for having sensory sensitivities; we just have a brain that is physically able to see, hear and sense things in a much more intense way than other people’s brains can. Having this new understanding doesn’t only allow us to forgive ourselves for the things that have happened up until this point; it also allows us to give ourselves permission to start existing as the people we truly are. Having a name or label that describes our position in society – autistic or otherwise neurodivergent and, therefore, disabled – helps us to understand that we don’t need to continue to cover up the parts of ourselves that have made us stand out. We can learn that they’re not deficits; they’re differences.

As I mentioned earlier in the chapter, realizing that you are autistic or otherwise neurodivergent doesn’t, unfortunately, immediately undo years of masking and camouflaging. It’s a good place to start, but learning to remove our masks fully is an ongoing process that looks different for all of us. Being able to unmask depends on factors that are both in our control – like reconsidering the beliefs we had about ourselves and the world around us before our diagnoses – and outside our control, too – like a safe environment, support from medical professionals, therapists and loved ones, and, as discussed earlier, a certain level of privilege (e.g. being able-bodied, cisgender or White).

However, I have found a few actionable things you can do to get the process in motion:

1. Listen to your body.
This is much easier said than done, especially when we’ve spent so many years ignoring signals that our body has sent us and, on top of this, might struggle with interoception (processing signals from our body) and alexithymia (the inability to differentiate between, identify or describe your feelings). However, if we strip this back and start small, we can build on the skill over time! For starters, if you feel tired: take a break. If something feels uncomfortable: question whether you really want to do it. If you feel like you’d rather stay at home tucked up in bed with a takeaway than go out and meet your friends at a busy bar: put on your pyjamas and order the pizza. Leaning into what feels good is a perfect place to start when trying to live more authentically.

2. Lean into your special interests.
In studies that examine the lives of autistic adults, engaging with special interests is positively associated with subjective well-being.15 Many of us will have spent a lot of time neglecting our special interests, whether that be neglecting to speak about them (because we don’t want to get called annoying) or engaging with them (for fear of being called strange). Taking the time to lean back into your special interests can really help you rediscover your autistic self. As I mentioned in Chapter 3: Translating Autistic Traits, I’m a massive indie music geek. I’ve recently started leaning into this more by visiting different charity shops and collecting CDs by my favourite bands (which I have also sorted into alphabetical order on my shelf, which is highly satisfying!). If you’re finding it tricky to know where to start, think about some of the things you enjoyed as a child, before masking really took hold. Maybe you were really into gaming? Maybe you loved being outdoors, or dressing up? Going back to our childhood interests can often help us find the things we love the most right into adulthood.

3. Spend time with other neurodivergent people.
What better way to start being more authentic than to surround yourself with people just like you? Spending time with like-minded people gives you a safe space to be yourself, knowing that you won’t be judged or misunderstood while doing so. I also find that when I spend time with autistic people who are maybe a little further on their unmasking journey than I am, it gives me the confidence to advocate for myself more openly. I was lucky enough to take part in a panel organized by Google in New York, which was an amazing experience in itself, but what made it even more special for me was sharing the stage with other autistic and neurodivergent people. One panellist was the amazing Jenny Hamer (they/she),16 Machine Learning Researcher and Global President of the Autistics at Google employee resource group. Jenny was incredibly smart and thought-provoking to listen to, while also being really unapologetically themselves on stage. They wore sunglasses and headphones, used a stim toy, and took the time to pause and process when they needed to. This, to me, felt like the coolest and most empowering thing I’d ever seen. Spending time with Jenny has encouraged me to advocate for myself and support my sensory needs more since then.

4. Focus on your strengths.
Seeing the positives that come with being autistic or otherwise neurodivergent can help you get more acquainted with your unmasked self. For me, this looks like being grateful for my pattern-recognition abilities because they allow me to break things down in a way that means I can pick up new skills quickly and get (relatively) good at most things I put my mind to. I’m also proud of the fact that I am a very independent person with a strong mindset, and grateful to my special interests for giving me the best music taste in the history of the world (completely impartial, obviously). Have a little dig around in the traits that we pulled out in the earlier chapters and pick out the ones you’re most grateful to for making you, you!

The (un)masked community

After I got my diagnoses of autism and ADHD and started speaking online about my experiences, I couldn’t believe how many people reached out to me, sharing their own similar experiences or stories of loved ones going through the same thing. Just as I had spent a lifetime feeling misunderstood and finally discovered answers as to what had really been going on, so many others out there had been left undiagnosed, misdiagnosed and unsupported and were coming to the same realizations that I had, too. As amazing as it was to feel validated by these people and these stories, which were so similar to my own, as my platform grew I quickly realized that I wasn’t able to be a support system to each of these people personally – and that I didn’t want to be the only one to get these connections and build these relationships, either! I wanted to create a safe space where all these people could come together, find support and friendships, learn to unmask, and share stories and experiences. And so, I did; I created the (un)masked community17 in the summer of 2022. Since then, we’ve built up a whole bank of resources like blogs and videos, a private community of hundreds of neurodivergent people all over the world, and hosted in-person events across multiple cities in the UK. My aim with (un)masked is to create a safe place where people can practise showing up as their real selves – knowing that they’ll be accepted and loved exactly as they are – so that they can build up the confidence to learn to unmask more frequently and in more places, and, eventually, learn to live their lives as the person they truly are. If you’re on your own unmasking journey, we would love to see you in the community or at one of our events – you can find more information at www.weareunmasked.com. A reminder: you can also find a list of other useful resources and websites at the end of the book on page 314.

—
Recap

In this chapter, we’ve explored:

What is masking?

Why do autistic and otherwise neurodivergent people mask?

The negative effects of masking.

How we can begin to unmask.

A bit about the (un)masked community.

Your takeaway box

Could we be more neurodiversity-affirming?

Something that I found interesting when writing this chapter, as someone who is both autistic and an ADHDer, is the ways in which we consider masking differently across the two neurodivergences. Regarding autism, the general consensus within the community is that we should individually try to unmask as much as we feel it safe to do so (to avoid the costs of masking) and that, as a society, we should make every effort to create safe environments for autistic people to unmask. However, when it comes to ADHD, a slightly different angle seems to be taken. A lot of the content and advice aimed at ADHDers (including that which I’ve put out myself!) focuses on ‘hacks’ and ‘strategies’ for ‘better managing’ your ADHD and improving your productivity. This, when you dig into it a little more, sounds an awful lot like … masking! If I wouldn’t share ‘social strategies for surviving as an autistic person’ because that would be harmful and encourage masking, then why is it okay to share ‘productivity hacks for ADHDers’? I don’t have an answer or solution to this, but I found it interesting when thinking and writing about this subject and feel as though it’s something we all, as a community and society, ought to consider more.

Be gentle with yourself

Remember to be kind and patient with yourself when unmasking. It’s not going to happen overnight, there isn’t one way to unmask, and you should only unmask when you feel safe and comfortable to do so. While unmasking, you might even start to feel like you’re ‘going backwards’ or losing skills. For me, this shows up in things like finding travelling so much more difficult than I used to because I’m now aware of sensory overload; or struggling to cook for myself (something that society deems to be straightforward but which is actually made up of so many different instructions and processes!) now that I’m not in robot mode forcing myself through all of the various steps, which my autistic/ADHD brain finds difficult because of its struggles with executive functioning, autistic inertia and slower processing. This regression in skills that you now know to cause overwhelm isn’t anything to be ashamed of or feel bad about – it’s just part of readjusting to life as an autistic person after spending a lifetime ignoring your needs.

Create a safe space

As a society, we need to ensure that we don’t make the mistake of putting all the responsibility of unmasking on autistic people themselves. Instead, we need to focus on how we can create environments where autistic people feel safe to unmask – whether that’s physically, by creating more sensory-friendly environments, or psychologically, by providing support and reassurance. Ask yourself the question: what can I do to show those around me that they are safe to be themselves in my presence? There is more on this, specifically on how to make your workplace more inclusive, in Chapter 9: In the Workplace.

7

Self-diagnosis vs Medical Diagnosis

In an ideal world, anyone with a neurodevelopmental disability would either a) be diagnosed in early childhood, regardless of how ‘inconvenient’ their differences are to the people around them, or b) upon suspecting that they might be neurodivergent later in life, have immediate and universal access to a medical professional and diagnostic assessment. Unfortunately, though, the world we currently live in is far from ideal, and many people, particularly women, people marginalized for their gender, people from low-income backgrounds and people of colour do not have this access.

Over the last few months, there has been a lot of discourse online and in the media about the fact that ‘everybody is diagnosing themselves with ADHD and autism because of TikTok and social media’. Just like the false narratives that we explored in Chapter 5: The Lost Generation, this is simply not true. Self-diagnosis rates are on the rise, yes, but this is not because of misinformation or because people are inaccurately self-diagnosing; it is because people suddenly have more access to information than ever before and because medical diagnosis is not adequately accessible. Throughout this chapter, I’m going to share a variety of reasons that demonstrate why, in today’s world, self-diagnosis is (and will remain) completely necessary and completely valid.

In this chapter, we’ll explore:

Why self-diagnosis is valid, and the factors that make medical diagnosis inaccessible.

Self-diagnosis and social media.

Why somebody might want a medical diagnosis.

The risks of getting a medical diagnosis.

If the traditional medical diagnostic tools aren’t designed to take into account our internal and personal experiences, how can they be considered the best way to decipher and decide what we’re really going through?

Nobody should have to choose their human rights of freedom and safety over seeking support for their disability, which is why advocacy is so important in changing the way that the world sees autism and other neurodivergences.

Why self-diagnosis is valid

A late diagnosis of autism, ADHD, or any other neurodevelopmental disability can be life-changing. Finally being given a word, or a label, for the way that your brain works can bring validation, understanding and self-acceptance in a way that many neurodivergent folks have never felt before. It allows you to forgive yourself for the things that have gone wrong, understand that your challenges aren’t a personal failing, and celebrate the parts of your brain that work in magical ways. Unfortunately, though, we don’t live in a world where this validation is universally or fairly accessible. In the words of Neurodivergent Lou (she/her),1 an autistic digital creator:

Autism, for too long, has been described from the outside, from the perspective of non-autistic people observing autism, largely viewing autism from a deficit perspective. Along with this, autism was originally studied in white boys, which has resulted in a limited understanding of autism in multiply-marginalized groups. Self-diagnosis is filling a gap in a system which is currently inaccessible and potentially traumatic to access; a system which doesn’t currently understand the different ways autism presents. Self-diagnosis is vital and life-saving. People know their own brain best, and self-diagnosis is usually the result of years and years of research.

As Lou shares, as of now, the questions and tools which are used to diagnose autism are largely based on other people’s perceptions of the autistic person, or how much that person’s differences inconvenience the people around them. For example, diagnostic criteria focuses on how we interact socially with other people, if we’re interested in what other people have to say and if we make ‘normal’ levels of eye contact with other people. This rings true for ADHD, autism, and almost all other neurodivergences, too. In my own personal experience, even though I’d spent my whole life knowing so deeply that I was different, and even though, to me, it felt like I was getting every single one of the hidden rules of life wrong, my differences weren’t different enough – or, should I say, inconvenient enough – to warrant an explanation. For twenty-four years, despite many trips to my GP, many conversations with my parents about never fitting in, and many Google searches about what could possibly be wrong with me, I was never given any answers or any explanation as to why I behaved, felt, and struggled the way I did. I was never told that anything was particularly special or unusual about me, and, as far as anyone around me seemed to be concerned, my differences were ‘just the way I was’, and my struggles were all rooted in anxiety.

In the new Autism Symptom Dimension Questionnaire (ASDQ),2 which made headlines in early 2023 and was said to be the latest ‘promising’ development in autism screening, many of the questions focus on how we, autistic people, interact with others, rather than our internal or personal experiences. Questions include:

How often does this person prefer to be alone than with family and friends?

How often does this person try to be physically or emotionally connected to family and friends?

How often does this person offer comfort to others?

How often does this person respond appropriately when others approach them?

How often does this person stand too close when interacting with others?

Although researchers from John Carroll University in Ohio described the survey as a ‘major advance’3 in diagnosing autism, and although it is great that efforts are being made to ensure that screening tools are more readily accessible, to me, this cements the narrative that people only care about autism as a disability when it inconveniences other people. Why are diagnostic screening tools only interested in identifying the ways in which our experiences affect other people, or how we interact with others, and not in exploring the ways that we experience life, ourselves? This leads us to the first of many reasons that we must consider self-diagnosis valid: if the traditional medical diagnostic tools aren’t designed to take into account our internal and personal experiences, how can they be considered the best way to decipher and decide what we’re really going through?

As Lou continued:

For the formal diagnosis system to better meet the needs of autistic people, it needs to be accessible, incorporating the internal experiences of being autistic and an understanding of how autism presents in multiply-marginalized groups. It needs to move away from understanding autism through the medical model and instead shifting to a neurodiversity-affirming model.

Further to this, as we explored in Chapter 5: The Lost Generation, the diagnostic tools that we currently use for autistic people weren’t designed to cater for a diverse range of people. The psychiatrists who first designed the process for diagnosing autism did so with young, White, cisgender male patients with visibly obvious differences in mind. To this day, it remains very common to be refused even getting an assessment for autism because those who are old, feminine, sociable, good at eye contact, ‘successful’, Black, brown or trans do not fit the stereotype of what it is to be autistic. Those who are marginalized by multiple systems of oppression are not accounted for in the diagnostic criteria and often cannot access a diagnosis. For example, the ratio of men to women diagnosed as autistic is generally quoted as 4:1,4 but recent research shows rates may actually be 3:4,5 with more women and people assigned female at birth actually being autistic.

This doesn’t mean that people without a diagnosis don’t experience the traits and struggles associated with being neurodivergent – it means that they don’t have an answer to why they’re happening. They don’t have the knowledge that they are disabled, they don’t have access to the support that they need and deserve, and they don’t have enough information about the way their brain works to build an accurate picture of themselves. I believe that everyone deserves all these things. If you exist in a world where you have been told you are just the same as everybody else around you, but you experience life in a very different way to everybody else, this has a staggering impact on your self-worth and well-being. Somebody sitting in front of a psychiatrist during a diagnostic assessment could be 100% autistic, ADHD, or otherwise neurodivergent, and still not walk away with a diagnosis. The questions that they are judged on weren’t designed to take into account their experiences, and so they don’t score enough ‘points’ to get the diagnosis that they deserve.

Medical diagnosis also remains inaccessible to many because of the waiting times associated with an NHS diagnosis in the UK, and the cost associated with a private diagnosis. For example, the waiting list for an ADHD assessment in the UK can be up to seven years in some areas,6 and in July 2020, Freedom of Information requests to NHS trusts found that at least 21,000 adults were on waiting lists for ADHD services.7

There is the option of seeking private assessments for both ADHD and autism from either online or in-person clinics, but they can cost upwards of £1,000 in the UK, and in the US, assessments can range from $1,000 to $2,000. This cost is simply not accessible to a large proportion of the population. Controversially, a BBC Panorama documentary,8 which aired in May 2023 and followed an undercover journalist through both NHS and private diagnostic assessments, suggested that a private ADHD diagnosis might not be as ‘valid’ as one obtained via the NHS. The documentary suggested that private, online clinics were not as thorough in their assessment, didn’t spend enough time with their patients, and diagnosed ‘almost everybody’ who booked an appointment. In my opinion, the BBC, and anybody else who suggests that a private diagnosis is any less valid, would do well to remember that the reason that almost everybody who goes for a private ADHD assessment comes away with a diagnosis could well be down to the fact that you probably wouldn’t bother paying £500+ for an assessment for something you weren’t pretty certain you had. Private diagnosis is often a last, life-saving resort for those who have been continually failed – both by the system and by the NHS – and so, along with self-diagnosis, it is completely valid and, I believe, dangerous to discount. Doing so leaves people privately diagnosed wondering if they will be doubted by the people around them or left without any support.

Self-diagnosis and social media

As we touched on in Chapter 5: The Lost Generation, social media has played a big part in the increase in people coming to realize that they are neurodivergent, ADHDers in particular. On TikTok, videos whose captions include the hashtag #ADHD have been viewed more than 20 billion times, and the decade-old Reddit page r/ADHD grew9 from 643,000 subscribers in March 2020 to more than 1.4 million in 2022, which shows a steep increase in discussion and curiosity about ADHD on social media.

However, while some media outlets like the BBC and the Guardian have implied that this might suggest that people are incorrectly diagnosing themselves or that ADHD is being overdiagnosed, this is likely not the case. In my view, yes, increased conversation about ADHD on TikTok will, of course, lead to greater awareness, and yes, identifying with one or two traits of ADHD does not mean that you need to get a diagnosis – but the vast majority of those who are self-diagnosing after discovering ADHD on social media aren’t just jumping to this decision after watching a couple of videos. Although it might be a video from social media that first ignites their curiosity about or awareness of ADHD, the vast majority of self-diagnosed folks that I have spoken to or that have shared their experience in the (un)masked community will then go on to do extensive research, many online tests, tons of reading and maybe even try to speak personally to other ADHDers. The social media content was just the first domino in the chain; it wasn’t the sum total of what influenced their decision.

As Georgia Holliday (she/her),10 autistic, ADHD and Tourette’s content creator and advocate, explains:

During the pandemic, I did what everyone did and downloaded TikTok, which led me down a lot of self-realization rabbit holes and made me deeply question who I was. After months of scrolling and ah-ha moments, I realized not only was I bisexual, but I also had ADHD (and a few short months later, I would come to realize I was also autistic and had Tourette’s). At this point, I was not clinically diagnosed, but I knew in my soul these labels matched my lived experience scarily well.

For some reason that I am yet to comprehend, people seem to think that when someone self-diagnoses, it simply involves them watching one fifteen-second TikTok video and then just whacking a ‘trendy’ label on themselves to seem ‘quirky’ and ‘interesting’ – but this is not the case. I researched (in-depth) for almost two years before having the courage to go to my GP, anxious I would be belittled and dismissed. People who self-diagnose don’t just go to their GP on a whim, often due to medical trauma and being gaslit by ‘professionals’ our entire lives.

Self-diagnosing before I got my clinical ADHD diagnosis and self-diagnosing as autistic has saved my life. I recognized, ‘Oh, okay, I’m not less, I’m not broken, I’m not unlovable; my brain literally works differently, and this world is not accessible for me. It’s not that I am bad; it’s that the world and the society we’re expected to live in do not cater for brains like mine.’ When you self-diagnose or self-identify, you can begin to accommodate yourself, advocate for your needs and live with more compassion, grace and kindness towards yourself.

I think we can all agree that compassion, grace, and kindness are something everyone deserves – whether they have access to a medical assessment or not. Although it pains me every time I hear of someone’s struggle to get the diagnosis that they need and deserve, it is powerful and reassuring to hear someone feel the same way that I did. I hope that if you are also struggling to make sense of your own brain, this offers you comfort too – and if not, I hope it confirms to you that anyone seeking diagnosis, in any shape or form, is not simply attempting to jump on a trend. They are just finally becoming aware of the way that their brain has always worked.

Why somebody might want a medical diagnosis

Although I firmly believe that self-diagnosis is valid, there are also several very valid reasons that somebody might choose to go down the route of medical diagnosis. First of all, growing up as an undiagnosed neurodivergent person in a neurotypical world can mean spending a lifetime being gaslit, misunderstood and invalidated. Naturally, this can make us begin to question our own judgement or rely on validation from the world around us. If you have constantly been told that your sensory needs are invalid, that there’s ‘nothing wrong with you’, and that you ‘just need to get on with it like everybody else’, you can imagine how you might start to lose that trust and confidence in your own ability to see things as they are.

This lack of trust in our judgement can show up as a sort of ‘imposter syndrome’ about our neurodivergences. We often get messages from new members of the (un)masked community wondering if they are ‘just being dramatic’, or explaining that they don’t feel as though they have the right to self-diagnose. As much as we might feel sure that autism or ADHD can completely make sense of our experiences one minute, the next minute these thoughts can quickly be replaced by narratives that we’ve had imposed upon us our whole lives:

Am I really autistic? Or am I just attention-seeking and dramatic?

Do I really have ADHD? Or am I just lazy and rubbish?

We can also end up tricking ourselves into thinking that we’re not ‘that bad’ or that we’re ‘fine’ – that is, that we don’t have a substantial level of support needs that require a diagnosis or support. We might tell ourselves that since we’ve managed to get this far (even if that has meant pushing through constant burnout, tricky social situations, sensory overload, and difficulty getting things done), we must not be ‘disabled enough’.

We might turn our own (often very flawed) coping mechanisms against ourselves and tell ourselves that, since we can force ourselves through social situations (even if we spend the whole time that we are there feeling confused and come away feeling exhausted), then we should continue to do so. Or since, up until now, we’ve managed to work forty hours a week without any additional support (even if that has meant not being able to look after ourselves or our living spaces), then we probably don’t need or deserve that support. These are thoughts and judgements that we would never think about or impose on anyone else, but due to the trauma that comes with spending a long time undiagnosed, it can be a really easy thought pattern to slip into.

During the early stages of my own journey with understanding my neurodivergence, I wasn’t sure about getting a medical diagnosis for autism myself at one point, and it was because I was grappling with these very thoughts. I had already started working in the space and creating content about neurodivergence after my ADHD diagnosis, and although the logical side of me felt valid in self-diagnosis and knew that I was autistic, I would feel anxious speaking about autism, worrying that people might ‘out’ me as self-diagnosed, or say, ‘Well, she isn’t even autistic!’ I would like to take this opportunity to reassure anyone else feeling this way that your feelings are completely valid – but that doesn’t mean they are true. If you have gone unsupported, undiagnosed and been gaslit about your experiences for a long time, you might start to internalize the narrative that people have told you until now, and that is to be expected. But the truth is that you do deserve support, understanding and validation. Both you as an individual and your experiences are completely valid – with or without a stamp of approval from the medical system.

The medication question

Another reason that somebody might want a medical diagnosis is so that they can access medication or support. Medication has been prescribed for many neurodivergences and mental health conditions since the mid 1900s, but it does require a medical diagnosis and so can be tricky for some people to access. As I mentioned earlier, in 1990, only forty children in the UK were receiving medical treatment for ADHD, so medication wasn’t very commonly used until recent years.

In the context of ADHD, medication was first used in 1937, when Charles Bradley, the medical director of what is today called Bradley Hospital in East Providence, RI, USA, noticed that a stimulant called Benzedrine11 caused some hyperactive children to ‘behave better’, and improved their performance at school. Then, in 1944, methylphenidate was created, and it was marketed in 1954 as Ritalin, a commonly prescribed stimulant medication to this day. At first, it was used to treat conditions such as chronic fatigue and depression, but it was soon discovered that it worked best to support those with ADHD. The NHS explains that Ritalin is thought to boost the levels of chemicals called dopamine and noradrenaline12 in the brain, which can increase activity in the parts of your brain that control attention and behaviour. This can help to make you less hyperactive or impulsive, and can also help you to pay attention and concentrate better.

Now, stimulant and non-stimulant medications can be prescribed to help make some of your ADHD traits more manageable, help with emotional regulation and improve your productivity. Taking ADHD medication isn’t like waving a magic wand, though. It doesn’t immediately resolve your struggles, and it isn’t for everyone because of potential side-effects and incompatibility with other medications or health conditions. Medication must be taken in conjunction with lifestyle changes and holistic support like coaching and therapy, but, having said all this, it can be life-changing and life-saving for many people.

I have personally taken a medication for ADHD called Elvanse since my diagnosis back in October 2021; which, based on speaking to other ADHDers both personally and through the (un)masked community, seems to be a very commonly prescribed ADHD medication for adults in the UK. Taking this medication has helped me immeasurably. It does come with side-effects, such as a reduced appetite and difficulty getting to sleep, but, for me, I am able to do things (literally, do things in every sense of the word – focus, organize myself, get through my to-do list!) much more easily, as it really helps to ease some of my executive functioning struggles (mentioned on pages 45–6) by providing my brain with the additional stimulation it needs.

The psychiatrist who diagnosed me gave me a really useful explanation of how to think about medication: rather than thinking of it like an ‘eraser’ of my ADHD, medication is like a full tank of fuel, which gives you the ability to get to where you want to go more easily, whereas lifestyle changes, therapy, and coaching are like the map that allows you to find your way there. Medication helps to give you the capability to live the life you want, and lifestyle changes such as coaching, therapy, and altering your routine and environment to better suit you, help you to navigate your way through that life. Medication for any type of condition or neurodivergence is a completely personal choice, and you should always listen to the advice of your psychiatrist or medical professional. However, the limiting factor in making this decision is that having the option to access this medication always requires a medical diagnosis, which could play a big part in someone choosing to go down this path.

It’s important to note that there isn’t currently any medication designed specifically for autistic people, because autism is a neurotype that doesn’t need to be ‘fixed’. I would argue we could say the same about ADHD, but maybe we’ll get there one day. Saying this, autistic folks are often prescribed different types of medication to deal with the co-occurring experiences that come with being an autistic person in a neurotypical world. This might include antidepressants, anti-anxiety medications, or small doses of antipsychotics. In some cases, autistic folks who are in danger of hurting themselves, during meltdowns or otherwise, might be given higher doses of antipsychotic medication or benzodiazepines, although there are very mixed feelings about the ethical implications of this within the community. Especially in in-patient units, these medications have sometimes been used to sedate autistic people, and potentially to help the people around them deal with their ‘difficult’ meltdowns, rather than helping the person get through it themselves.

Other support

In the same way that we need a medical diagnosis to access medication, people typically need a medical diagnosis to access other types of support, too. Disabled people in the UK are entitled to Personal Independence Payment (or PIP),13 which is a benefit payment paid by the government that can help with extra living costs associated with your disability, under the categories of daily living and mobility, such as support with housework or in looking after yourself, and support getting to and from the places you need to visit. PIP is a weekly payment and would typically require a medical diagnosis in order to qualify – however, even then, it is notoriously difficult to access, and many autistic and ADHD folks are wrongly refused the payment.

Some NHS services – for example, autism-specific counselling – might require a medical diagnosis, too, and some workplaces might request a medical diagnosis for reasonable adjustments to be made (although, legally, they are obligated to support you either way!). It isn’t right that these various types of support require a medical diagnosis – because, as we know, a medical diagnosis is currently a privilege rather than something that is universally accessible – but, unfortunately, that is still the case at the moment.

The risks of getting a medical diagnosis

As you can see, there are many reasons why getting a medical diagnosis is preferable to self-diagnosing for plenty of people, myself included. However, getting a medical diagnosis of any neurodivergence, especially autism, can, unfortunately, come with associated risks.

Firstly, there have been several news stories of families with autistic children that have been denied immigration into various countries, simply due to being autistic. A medical diagnosis of autism will show up on somebody’s medical record, which will usually need to be shared with immigration departments when applying for residency or visas. In these cases, the governments of these countries deemed that the cost of care for the autistic person was too much of a drain on taxpayer-funded services. One high-profile instance of this was when Arianna Alfonzo, a twelve-year-old autistic girl from the Philippines, was barred from moving to New Zealand with her parents.14 New Zealand Green Party MP Ricardo Menéndez March, who advocated for the Alfonzo family, called the system ‘a deeply dehumanizing process which strips them of their human rights and makes them plead in the media and to MPs to simply be seen as the whole human beings that we all are’. Historically, Canada also considered autistic people to be a ‘burden’ on the state’s healthcare system15 and shockingly refused to allow any autistic people to immigrate into their country until 2018.

In addition to this, those who are both autistic and trans, gender non-conforming, or non-binary may be denied access to gender-affirming healthcare. Gender-affirming healthcare is both life-saving and hugely necessary for trans and non-binary folks, but unfortunately, they can face many barriers when attempting to access this care; a medical diagnosis of autism can prove to be an additional barrier. In many parts of the world, in order to qualify for hormone replacement therapy, you must first undergo a diagnostic assessment for autism, and should you get a diagnosis, you may be judged as too incompetent to transition. This, again, is completely unacceptable, especially because there is a huge crossover between the neurodivergent community and the trans+ community. Studies have suggested that ADHDers are six times more likely to be gender non-conforming16 and, according to the largest study yet to examine the connection between transness and being autistic, people who do not identify with the sex they were assigned at birth are three to six times as likely to be autistic17 as cisgender people.

I spoke to Arlo West (they/them),18 trans and non-binary EDI consultant and director of Trans Pride Manchester, who explained why they have chosen not to get a medical autism diagnosis:

I’ve been out as trans since January 2020 and have since medically transitioned – privately, might I add. In one of the various meetings with my gender psychologist, she said that my borderline personality disorder (BPD) diagnosis from 2015 was a misdiagnosis and that I was probably autistic. When I mentioned this in therapy, my therapist also said it was likely I was also autistic, as well as having BPD and being trans.

Since then, I’ve debated getting ‘officially diagnosed’ as autistic but have been told by my gender psychologist that it would affect my transition and gender-affirming healthcare (more than the NHS’ current failings on trans people). Therefore, I have decided not to pursue this. I had already struggled to get the healthcare I needed, let alone adding more diagnoses on to the list for me to ‘prove my competence’ in making the right decision for my own life. I was, and still am, really tired of jumping through hoops to live my authentic, happiest life; I can’t and won’t do it any more for an already broken system.

Even when privately transitioning, I said a lot of what I knew they ‘needed to hear’, like I played with boys’ toys, wore boys’ clothes, didn’t fit in with the girls’ groups, etc., even if some of it was exaggerated. There is a huge overlap between being trans and neurodivergent, and these stats get bigger when we include the entire queer community – so it’s not a surprise that a lot of people who are trans, non-binary or gender non-conforming are also autistic. I think this overlap is just because of the process of figuring out who you really are. In my situation, I was figuring out and navigating my gender identity from 2016 onwards after not feeling happy within myself for as long as I can remember. I thought it was because I was gay, so I came out as gay at thirteen, but that wasn’t it. It wasn’t until I met my partner who gave me the language of what being non-binary meant. In that moment, the world lifted, and everything felt right. When you’re evaluating your gender identity, you are more likely also to re-evaluate other areas in your life; one being if you’re neurodivergent. Then I explored that, and it all felt right; lots of things started to make sense, and I was feeling more and more at home in myself. I personally can’t talk about my experiences of being trans & queer without talking about my neurodivergence, and I can’t talk about my neurodivergence without talking about being trans and queer.

Autistic people who are medically diagnosed might also face being placed under guardianship in the US (a system that allows one person to legally make decisions about another person’s life). According to ASAN, the Autism Self Advocacy Network, anyone who thinks a disabled person cannot make good choices19 can ask a court for guardianship over them, and if the court grants that guardianship over the disabled person, the disabled person’s right to make choices is taken away. Similarly, an autism diagnosis can have an effect on decisions made in family courts; an autistic parent might be deemed ‘less capable’ of raising their child and so lose custody.

For all these reasons, some people might prefer not to have a medical diagnosis of autism on their record – which is sad but unfortunately understandable. Nobody should have to choose their human rights of freedom and safety over seeking support for their disability, which is why advocacy is so important in changing the way that the world sees autism and other neurodivergences.

On top of this, the actual process of going through a medical diagnosis can be extremely difficult and draining for neurodivergent folks. As we touched on earlier in this chapter, a lot of the diagnostic criteria for neurodivergences are focused from an outsider’s perspective, rather than centring on the experience of the neurodivergent person themselves. This means that during the diagnostic process, you are forced to advocate for yourself and explain yourself to the medical professional – which is made even more difficult if that professional hasn’t been given proper training as to how the condition might show up in different types of people. This whole process can feel infantilizing and dehumanizing and can really take a lot out of you.

In my own experience, the autism assessment brought up a whole load of trauma and experiences I hadn’t previously considered, and because of the significant lack of post-diagnosis support that is currently available, I was left to deal with the weight of these feelings by myself. It was a lot to process for me and left me feeling fragile and emotionally drained for the following days. In my autism assessment, one of the things I found hardest was being forced to reassess and provide examples of when I had ‘misunderstood the feelings and intentions of other people’. This meant looking back at many people that I had thought were close friends, and realizing that, maybe, they were just being nice to me and I had mistaken their pleasantness and kindness for friendship, and looking back at failed romantic relationships and realizing that, maybe, they had just been physically attracted to me but I had mistaken that attraction for romantic feelings or even love. This completely wobbled my sense of self, and I can distinctly remember sitting on a bench at the side of the canal by my old apartment, sobbing down the phone to my mum about the fact that I felt as though no one had ever really liked me, or that, if they had, they had just liked my mask rather than the real me. These feelings really stuck around for the days and weeks that followed (I even had to cancel going to see one of my favourite bands which, if you know me, you’ll know is something that I never do, because I just couldn’t face being around other people). These feelings that were triggered by the process of getting my medical diagnosis still come up in therapy for me to this day.

I am still glad that I did it and I was really lucky to have the support of my family around me, but I now always advise anyone going through the medical diagnostic process to make sure that they block some time out afterwards to recover and that they are in a safe environment with loved ones to look after them where possible. When there is so little post-diagnostic support available, you might feel as though it’s not worth going through that whole process for very little tangible outcome – and if that is how you feel, and you would prefer to self-diagnose, then that is perfectly valid, too.

—
Recap

Overall, there are many factors that come into play when each individual is weighing up whether or not to get a medical diagnosis. They might want a medical diagnosis for validation or might need it in order to access medication and support. Equally, they might feel as though having a medical diagnosis on their record could affect their quality of life or safety; or they might not physically be able to access a medical diagnosis because of cost, waiting times, or because of outdated and biased diagnostic criteria and training of professionals. Each person’s choice is completely their own and completely valid, and it’s important that we remember that self-diagnosis is an imperfect but necessary solution to a very broken system.

In this chapter, we’ve explored:

Why self-diagnosis is valid, and the factors that make medical diagnosis inaccessible.

Self-diagnosis and social media.

Why somebody might want a medical diagnosis.

The risks of getting a medical diagnosis.

Your takeaway box

Remember that you are valid

If you are not yet medically diagnosed or are choosing to remain self-diagnosed, please remember that you and your experiences are just as valid. It is likely that you are going to face some backlash or stigma, especially with the way that the media is demonizing self-diagnosis at the moment, but please remember that you don’t owe anybody an explanation and that you are the expert in your own experiences. If you need a team of cheerleaders and validators in your corner, the (un)masked community are here to welcome you with open arms!

Don’t ask or assume

Whether you are a neurodivergent or neurotypical person reading this, please endeavour never to ask somebody whether or not they are medically diagnosed or question their decision either way. Self-diagnosis is a life-saving solution to a broken system, and so will remain completely valid and completely necessary until that system is changed.

8

Ableism and Pretty Privilege

This chapter, out of all of them, is a little bit of an uncomfortable one to write. You’ll see why later, but it starts right from the get-go. We jump straight into uneasy territory with the chapter title – because nobody (especially somebody with very damaged self-worth thanks to a lifetime spent undiagnosed) likes to be the one to call themselves ‘pretty’. But for any of this to make any sense, I have got to start by explaining to you that, according to Eurocentric beauty standards, I am considered pretty. I hold privilege due to being White, thin, able-bodied and cisgender (I am also privileged in other ways, such as economically and geographically, but these aren’t as relevant here), and the combination of those things gives me what is referred to as pretty privilege, too. Pretty privilege is the idea that people who are deemed more attractive or desirable,1 based on commonly accepted societal beauty standards, have a sort of upper hand in the world and are afforded more opportunities than those who aren’t.

And although this privilege is exactly that in many parts of life – a huge privilege that makes a lot of things a lot easier for those who hold it – in the context of gaining a timely diagnosis, it actually comes with a cost, too. Holding pretty privilege is one of the things that I believe played a huge part in my lack of access to diagnoses of ADHD and autism throughout my childhood and teenage years, as it intersected with the ableist beliefs that society still holds around the way that disabled people should look and act.

In this chapter, we’ll dig into:

How the way we look can affect our social interactions.

Society’s misconceptions of what a disabled person ‘should’ look like.

How misogyny and ableism interact.

Ableist society has taught us that ‘disabled = bad = ugly’, so people can’t comprehend that someone they deem to be pretty does actually have support needs.

Often, as long as we appear ‘normal’ (or conventionally beautiful), no one really considers what might be going on for us internally.

How the way we look can affect
our social interactions

When I tell people that I had a really tough time throughout both primary and secondary school or that I never really had any friends, they probably picture me standing alone in the corner of the playground while people pointed at me and laughed. But, although this might have been how it felt, that wasn’t the case.

My struggles didn’t come from being left out of the ‘popular groups’ – they came from being invited into them.

Thanks to being White, thin and conventionally pretty, I looked like I could have belonged with the ‘popular kids’, and, from a distance, and thanks to masking, I probably appeared as though I acted like them, too. This meant that time and time again, I was invited into social situations that, in reality, I didn’t have the social skills to navigate. I would be welcomed into friendship groups, included in games or conversations and invited to social events. After a short period, though, the people around me would inevitably realize that they didn’t actually want to be friends with me (thanks to a hefty dose of what I now know to be ableism), and it would be time for me to be removed from the friendship group. Sometimes this was a voluntary exit after realizing that I was unwanted, and sometimes it was a more forceful and dramatic exit preceded by bitchiness, nastiness, or name-calling. At this point, I would make my way to another friendship group with a similar social standing to the previous group, and this cycle would repeat.

So, although I never formed close friendships and certainly never felt as though I belonged anywhere, I was never enough of an outsider for anybody to notice that I was struggling socially or being ostracized. As far as any of the adults in my life were aware, I was just a normal pre-teen and then teenage girl dealing with the usual bitchiness and bickering that are part and parcel of being a girl that age.

I can distinctly remember, on several occasions (between the ages of ten and twenty-four, from primary school all the way through to the final friendship group I went through this cycle with just before my diagnoses), my mum sitting me down and asking me the question, ‘Why do you always try to be friends with the popular girls, Ellie?’ She would go on to say, ‘They’re not like you. They’re loud, they’re bitchy, and they’re nasty. You’d be much better off trying to find some quieter friends.’ But, as many of the girls, women and people marginalized for their gender reading these pages will know, especially in high school, it is very much a case of being stuck between a rock and a hard place – either you’re ‘in’ with the popular girls (which makes your life hell) or you’re not ‘in’ with them, and they make it even more hellish.

I absolutely acknowledge that there is a certain privilege that comes from having the option to appear to fit in in the first place – it is definitely not a nice or safe environment for neurodivergent or disabled people who have more visible differences, either. But, at the same time, I resent not being ‘different enough’ to set off any alarm bells. It feels as though my differences weren’t different enough, or inconvenient enough to the people around me, to be noticed, which led to me spending such a long time undiagnosed and performing such heavy masking.

This had a serious effect on my mental health and self-worth, as I was constantly questioning what could possibly have been so wrong with me or so bad about me in order to make every single person that I ever became friends with want to leave. I was told over and over again that I was selfish, self-absorbed, too much, annoying, bitchy, and a whole host of insults – and not only did I hear these insults from other people, but after hearing them over and over again, I learned to genuinely believe them myself. I’d never been given any reason or explanation that could justify or make sense of people feeling this way about me, so the only plausible explanation in my mind was that they must have been right. I must have been the horrible person that they made me out to be.

I can distinctly remember, during the Christmas holidays of my final year of high school, having a phone conversation with a friend where I said that I was feeling really anxious about going back to school because the girls around me were making my life a living hell at the time. She’d reassured me during the phone call, and I felt a lot better, like she was in my corner, so, afterwards, I posted on Twitter – something along the lines of, ‘I might not have a huge number of friends, but the ones that I do have are all I’ll ever need’ (probably followed by a string of cheesy emojis). Within an hour, a girl from my year group at school tweeted, ‘Quality not quantity when it comes to friends … #ThingsPeopleWithNoFriendsWouldSay’. Two months later, I dropped out of school for good.

I can’t help but think that, had I not ‘looked’ like I belonged with the ‘popular kids’, my social skills alone would not have been enough to grant me access to their circles. If this had been the case, I believe that my ostracization might have been more visible to my teachers and my parents, which would have meant that they had more chance to realize that I was clearly very different to my peers and therefore question why that might have been the case. It is all a case of ifs and buts and maybes, but, in my mind, this could have led to my autism and ADHD being picked up a lot sooner. When we see amazing women like Melanie Sykes and Christine McGuinness opening up about their late diagnoses of autism, after many years of working in the media and being celebrated for their looks, it reminds us that often, as long as we appear ‘normal’ (or conventionally beautiful), no one really considers what might be going on for us internally.

The ditzy blonde stereotype

Another harmful stereotype that holds a lot of girls, women, and people marginalized for their gender back from an ADHD diagnosis is that of the ‘ditzy blonde’. Many women have inattentive ADHD, and even those who are hyperactive or combined ADHDers often don’t present as outwardly hyperactive but instead experience the hyperactivity internally, within their minds. (You can find more detailed explanations of these traits and their presentations in Chapter 4: Translating ADHD Traits). This means that a lot of the time, the only obvious or visible traits of ADHD that a girl or femme person will present are disorganization, forgetfulness, doodling and struggling to concentrate. These traits match very closely with the characteristics of the stereotypes that we’ve been taught of a ‘ditzy blonde’ or a ‘girl who is away with the fairies’.

Similarly, somebody might be considered ‘gullible’ or ‘stupid’ for believing everything they are told, when, in reality, it is either that they are a literal thinker or that they struggle with auditory processing and so don’t immediately understand what’s been said to them – or even a combination of the two.

Instead of realizing that somebody’s struggles, traits or differences are down to having a neurodevelopmental condition, they are just put down to being ‘quirks’ or ‘personality traits’ – and often even joked about or teased. In our stereotypically patriarchal society, girls and people marginalized for their gender are praised for being quiet and calm, whereas boys are encouraged to be boisterous, with the age-old saying, ‘Boys will be boys.’ This can mean that girls are encouraged to mask and internalize their thoughts and experiences from an earlier age.

I believe that this reality is rooted in misogyny. A 2019 study by TODAY found that 52% of women believe that gender discrimination negatively impacts their medical care.2 A third of women said they felt a need to ‘prove’ the legitimacy of their medical concerns and symptoms to their doctors. This goes some way to explaining why a woman’s struggles with disorganization, memory and concentration are not taken seriously as a medical concern and are often brushed off as being personal flaws.

A similar thing occurs with the ‘bitch’ stereotype that is often assigned to autistic women before or even after they receive a diagnosis. Instead of anybody questioning whether our ‘blunt’ communication, avoidance of small talk, lack of eye contact and inability to read social cues could be caused by a disability – it is simply put down to us being bad people, and again, a personal flaw. For me, my communication style and perfectionism were even put down to the fact that I was ‘almost a Virgo’ (I was born in August, but my due date was the 5th of September). Looking back, it is laughable that it was considered more plausible that my differences could be attributed to something as far-fetched as a star-sign (that wasn’t even the right one!) before it was even considered that I could have a different neurotype.

The dangers we face

Something we also need to consider in regard to the combination of misogyny, ableism and pretty privilege is the dangerous situations that undiagnosed neurodivergent women and people marginalized for their gender can be put in. Holding pretty privilege led me into some vulnerable situations that, looking back, are quite concerning. It granted me access to social situations that, in reality, I wasn’t able to navigate and left me open to manipulation – which caused me to mask, people-please, and go along with what other people wanted me to do, because I literally didn’t know any better. This is the case for all autistic folks, but the danger becomes twofold for women and people marginalized for their gender, who are already considerably more likely to experience repeated and severe forms of abuse, including sexual violence. This is one of the things that I worry about most when it comes to the late diagnosis of autistic girls and non-binary people, because I know just how lucky I am to have narrowly avoided events even more traumatic than the ones I experienced, and just how close I came to being taken advantage of without ever realizing.

I fear for the next generation of undiagnosed autistic girls and people marginalized for their gender who might not be so lucky, and who are vulnerable and difficult to safeguard because they are completely hidden in plain sight. After all, as I’ve already mentioned, recent research suggests that 80% of autistic girls remain undiagnosed at the age of eighteen, and so if we don’t know that an autistic girl is, in fact, autistic, how can we even begin to safeguard her or give her the tools to safeguard herself? This also applies to non-binary people and those who were assigned female at birth, although research into the diagnosis rates of these groups of people is very limited. If we don’t all clue ourselves up to these issues, this cycle will continue forever, but each of us has the power to make a huge difference in the lives of so many autistic people; the positive changes that we make now will pave the way!

As I am writing this chapter, I have seriously conflicting feelings about just how much I should and shouldn’t divulge here. On the one hand, I want to share my stories in order to highlight just how dangerous the combination of being conventionally pretty, undiagnosed and autistic can be for young girls and people marginalized for their gender. But on the other hand, I also know that there are things that happened to me that I haven’t yet had the chance to even process myself, and that I want to protect my family and friends from. Perhaps, without going into too much detail, one of the examples which haunts me the most and is probably an eye-opener to share with you is that at the age of thirteen, when I first started to blossom as really being conventionally ‘pretty’, I had a sixteen-year-old boyfriend. This age gap would be concerning for any young teenager, but if you add into the mix that I was, at this point, doing anything and everything I could in order to fit in and try and make the people around me like me, then you can see where some serious safeguarding issues could arise.

Don’t get me wrong, I know vulnerability isn’t something that is exclusive to autistic people who hold pretty privilege – Carly Jones MBE carried out research for her book Safeguarding Autistic Girls that suggested 91% of autistic adults had experienced some form of abuse before their autism diagnosis,3 so clearly the majority of us are vulnerable in some way – but, in my experience, a lot of the dangers that I encountered were so closely intertwined with the fact that I held pretty privilege, or looked ‘normal’, and therefore had a level of access to social situations that I otherwise might not have been exposed to. A pretty autistic woman has the same risk of being approached by abusive or dangerous people as all women and people marginalized for their gender do, but what she might not have is the insight and social skills in order to identify their behaviours as abusive or dangerous.

We all need to remember that being neurodivergent doesn’t have a look. It is not always going to be visible, it is not going to be highlighted by a flashing neon sign, and it is absolutely not limited to a specific type of person. Neurodivergent people, collectively, are as diverse as human beings generally – and that, therefore, includes conventionally ‘pretty’ girls who might, for all intents and purposes, appear to be completely ‘normal’ – whatever normal means. We need to be on the lookout for signs of autism and ADHD in all types of people, no matter what they look like, no matter their social standing and no matter if, from the outside, their social skills don’t appear to be ‘as bad as they could be’.

Society’s misconceptions of what a disabled person ‘should’ look like

Not only was my appearance part of the reason that I didn’t receive my diagnoses for such a long time, but I have also, since diagnosis, discovered that it has a huge effect on the way that I am treated as a disabled person.

As a warning, this next section might feel a little bit uncomfortable for you to read. I’m going to be talking about how ableism (discrimination in favour of non-disabled people) intersects with pretty privilege, and it is not nice for any of us to realize that we have been subject to societal conditioning and that we might hold ableist biases within ourselves. I want you to try and push through the uncomfortable feelings and remember that it is not your fault that you have been subconsciously taught these things, but it is within your power to question them, fight them and change your thoughts and opinions. In much the same way that social movements like Black Lives Matter4 and #MeToo5 made many of us aware of the fact that we had a lot of anti-racism and anti-misogyny work to do within ourselves, as we start to collectively dig around in the ableist ideology that floats around in our society, we will realize that we have a lot of anti-ableist work to do, too. This also includes those of us who are disabled and might have feelings of internalized ableism.

So, as much as it might be uncomfortable to realize, ableist society, over time, has conditioned us to think that ‘disabled = bad = ugly’. For many people, there are lots of negative connotations that come with the word ‘disabled’. We’ve (incorrectly) been subconsciously taught that disability is a bad thing, that it is something we should hold sympathy for, and that somebody who is disabled is somehow a lesser human than somebody who isn’t. Research by Scope, the disability equality charity in England and Wales, showed that negative attitudes and prejudice remain a major problem for disabled people, with three out of four disabled people (72%) having experienced negative attitudes or behaviour in the last five years.6 All those negative misconceptions, it goes without saying, are completely untrue. But because these biases are so deeply ingrained into our collective consciousness, they cause a lot of trouble for the way that disabled people are allowed to navigate the world, the support that disabled people have access to and the way in which they are treated.

For example, even now that I have been diagnosed with ADHD and autism, which objectively means that I am disabled and that my conditions have a ‘substantial’ and ‘long-term’ negative effect on my ability to do normal daily activities, people find it hard to comprehend that I actually have support needs. This, in part, is down to their lack of education and understanding of ADHD and autism, but it is also down to the fact that because of that pretty privilege we were talking about earlier, and the privilege I hold in being able-bodied, to them, I don’t ‘look like a disabled person’. That is, I don’t look like what they have been led to believe a disabled person should look like.

This means that even though I am extremely open about the fact that I am autistic and that I have ADHD, which therefore means that the vast majority of the people that I work with, interact with and come into contact with are aware of my diagnoses, it is still extremely rare that people accommodate me in the way that I require. I believe that, although they understand theoretically – ‘Ah, yes, Ellie is autistic and has ADHD’ – they look at me and see a completely ‘normal-looking’ human, and as a result, can’t quite comprehend that the person in front of them does actually have support needs. Having the knowledge that I am autistic and that I have ADHD is a very different thing from actually understanding what that means for the way that you need to interact with me and the way that I might interact with you.

Just because I look like a ‘completely normal’ human being, that doesn’t stop me having disabilities and experiencing the difficulties that those conditions bring to my life. According to Hidden Disabilities (the home of the sunflower lanyard), globally, one in seven of us live with a disability, and of those, 80% are invisible.7 That is over 1 billion people who are living with a non-visible disability – so why, when coming across the words ‘disabled person’, do so many people still only imagine a wheelchair user? Changing this narrative is a big part of my mission – I want to help to reframe people’s perception of disability and neurodivergence, as something normal that we can all recognize, celebrate and be at ease with in everyday life.

How misogyny and ableism interact

Something that so many neurodivergent people are tired of hearing is, ‘Oh, but you don’t look autistic!’ or, ‘Oh, you don’t look like somebody that has ADHD!’ As we spoke about in Chapter 5: The Lost Generation, there is no such thing as a ‘look’ for either of those conditions. Not ‘looking’ like a neurodivergent person – that is, not being an eight-year-old cis White boy – does not mean that we don’t need and deserve to be supported, accommodated and validated in our disabilities.

Below are a collection of experiences from other multiply-marginalized neurodivergent folks, which show that so many of us have been through the same thing:

Pretty privilege has prevented me and so many others from getting the help that they so desperately need. Before being diagnosed, doctors said I was fine because my life looked perfect. On the outside, I was a fashion model working for brands like ASOS and Vogue and travelling the world for shoots. But at that same time, I nearly took my own life after repeatedly moving country every time I had a problem.

– Leanne Maskell (she/her) – @leannemaskell – ADHD coach, author and model8

There is no face to what autism/ADHD looks like. But, to most people, it doesn’t look like a mixed-race, pretty young girl who is intelligent for her age and excelling in school. Even now, at thirty, most people would never guess I was neurodivergent because my disability is purely invisible. To everyone who looked at me, I just seemed quiet, shy, anxious, alone, an outsider, ‘could try harder’, or ‘seems distracted’. Now I’m aware, I see how it’s difficult for people to see me functioning one day and not the next and not see it as an excuse or rudeness.

– Tanisha Cro (she/her) – @neurodiversemoney – neurodivergent financial coach9

I have been in community groups and heard Black women’s experiences of being denied referrals from their GPs as they were told their symptoms did not seem ‘severe enough’ or that they did too well in school, and I experienced similar feedback when getting my ADHD diagnosis. I have also heard stories of Black women having to deal with covert discrimination and microaggressions of the ‘angry Black woman trope’ – when they did attempt to assert their position and explain their experiences and symptoms. Black women often have to fight and advocate for themselves – for our experiences and pains to be seen and taken seriously, and it can be utterly exhausting. Having to navigate sexism and racism whilst trying to get the support we need for our ADHD and often not even knowing that ADHD is what it is, because we are not seeing people who look like us often at the forefront of these conversations.

– Abigail Agyei MBE (she/her) – @abi_agyei –
neurodiversity advocate and TEDx speaker10

Being a ditsy, gullible blonde was my stereotype in high school, but if someone had just looked a little deeper, they’d see that my taking things so literally and my inability to read between the lines was a clear indicator of autism. Every time I struggled to understand, it was just laughed off as a silly, blonde thing to say – when in reality, I couldn’t communicate in the same way as everyone else.

– Robyn Clarke (she/her) – neurodivergent copywriter and content creator11

—
Recap

In this chapter, we have explored:

How pretty privilege might affect whether or not somebody is recognized as being neurodivergent earlier on in their life.

The importance of early diagnosis and intervention to ensure that potentially vulnerable autistic girls and non-binary people can be safeguarded.

The way in which ableist society has taught us negative connotations of the word ‘disabled’.

How these negative connotations might affect the level of support or accommodation that neurodivergent people have access to.

Your takeaway box

Question your bias

It is really important that every single one of us takes the time to question our bias – society has subconsciously taught us lots of things that are not only incorrect and problematic, but extremely harmful for disabled people. Remember that disabled is not a negative word; it is just a neutral fact in some people’s lives, and also that just because you can’t see somebody’s disability, that doesn’t mean that it doesn’t exist and need accommodating. Take the time to educate yourself and challenge your ideas by listening to a whole range of neurodivergent and disabled people – including people of colour, queer people, and people with a wide range of support needs.

It’s nice to be nice

This one might sound simple, but it’s a just-as-important-as-ever reminder to everybody, whether neurodivergent or neurotypical, to please, please be kind. We never, ever know what is going on in somebody else’s world, and we never, ever know the reasons why they act the way they do, behave differently from us or struggle with certain things. Different groups of girls bullied me over and over again when, in reality, the things that they were bullying me for were autistic and ADHD traits, part of my undiagnosed disabilities. Everybody is different, and there is nothing scary or negative about that. It is just a natural part of being a human, and if we could all show a little more understanding of and kindness towards each other’s differences, the world would be a much better place.

9

In the Workplace

The world of work can be one of the most challenging parts of anyone’s life, but when you add the challenges that neurodivergent people face into the mix, it can be a minefield. Let’s face it: the stereotypical, Monday to Friday 9–5 workplace is just not built for people with busy brains. Open-plan offices, long hours, the potential for lots of sensory stimulation caused by ringing phones and hustle and bustle, unspoken rules that don’t seem to make any sense, and a whole lot of ‘well, that’s just the way it’s always been done’. Sigh.

Until recently, neurodivergent people have pretty much just been forced to conform to neurotypical ways of working because of a lack of awareness, understanding, and open dialogue, which has been hugely harmful and unproductive. According to recent research by the Office for National Statistics, only 22% of autistic people are in any sort of paid employment,1 even though research by the National Autistic Society suggests that 77% of those who are unemployed state that they want to work.2

As a neurodivergent person – especially if you’re somebody who has spent a lot of time undiagnosed – it can be tricky to know what to ask for when advocating for yourself or asking for accommodations. You might know that you struggle to maintain focus, that you find being in-person in the office overwhelming, or that instructions given to you verbally seem to go in one ear and out of the other, but after spending your whole life without any extra support, it can be hard to know what is reasonable to ask for, what adjustments are possible, and which things will actually help you in the first place.

Personally, when I got my diagnosis, it finally made sense to me why I had struggled to hold down a job up until that point. We’ll get into that a bit more later, but this realization empowered me to speak up about my experiences, find a new way of working that suited me, question the way that things had always been done and go on to share my learnings with employees and employers in some of the biggest companies around the world. I don’t claim to have all the answers, but I know that the struggles I faced at work are also experienced by millions around the world, so I’m passionate about showing how we can all make the workplace a more inclusive space for everyone, neurodivergent people included.

In this chapter, we’ll look at:

We’re not broken; the system is – how the workplace is the one that’s broken, not us.

Examples of accommodations that you could ask for.

Accessing accommodations.

Things that workplaces could (and should) be doing to be more inclusive.

We’ve never actually taken a minute to stop and consider whether the education system works for everybody, the workplace works for everybody or society in general works for everybody – and that has meant that, for a lot of us, it doesn’t.

Stop thinking, ‘I’ve survived up until now without accommodations, so maybe I don’t need them,’ and start thinking, ‘I am finally getting access to the support that I have always needed and deserved.’

We’re not broken; the system is

I’m going to start off this chapter not by introducing myself, but by introducing the person that would have been here, had I been writing this chapter before the lightbulb moments that came with my diagnoses, back in the summer of 2021.

Meet Ellie 1.0 – the Ellie that would have been here with you at that time.

She had dropped out of high school, she had never been able to hold down a job for more than a year, she was debilitated by overwhelming waves of anxiety and depression, and she was very aware of the fact that she just didn’t seem to be able to do things in the same way that everybody else around her could. She had a hard time getting things done, she had a hard time achieving anything of any measure, she was very easily overwhelmed, and she genuinely believed that life, for her, was very much going to be a case of surviving in a basic job rather than thriving in any sort of career. She was fragile, she was ashamed, and she felt like the world of work was just not built for her.

Fast forward eighteen months, and let me introduce you to the Ellie that is writing for you today – Ellie 2.0, if you will. This Ellie is happier, she is healthier, she is more fulfilled, and she is more empowered. She no longer thinks that she’s broken – and she’s achieving more than she ever thought possible. Over the last year, she’s written for the Independent, she’s consulted for huge corporate companies like Google, and she’s built up an audience of over 300,000 people online – and she’s even had the chance to write this book! She’s trying her best to live authentically and unapologetically – and she finally feels a level of satisfaction, both in her personal life and in her professional life – that she truly believed was something that was always going to be out of her reach.

So … What changed? How did the fragile and under-achieving Ellie of 2021 become the authentic and empowered Ellie of 2023?

You might think that the difference came from working hard. You might think that it was a case of being in the right place at the right time or that it came from a stroke of luck. You might think that it is a result of taking a new medication, or the byproduct of a handful of viral posts on the internet. And yes, you’d be right in all those suggestions – they definitely all helped. But really, it was just one simple thing that changed:

I started working with my brain rather than against it.

At the time of writing, in 2023, we live and work in a system that doesn’t fully recognize, accept or embrace each person’s uniqueness and each person’s varied needs. The fact that my platform is growing for the work that I’m doing, including being able to write this book, shows that there is some movement in the right direction, but on the whole, the working world just isn’t inclusive enough: it’s a system that puts us all in the same box and pressures us to perform, live and work in a homogenous way – regardless of whether that way actually works for us or not.

We’ve never actually taken a minute to stop and think about whether the forty-hour workweek works for everybody (until very recently when trials for the four-day workweek began). We’ve never actually taken a minute to stop and consider whether the pathway of getting ‘good’ grades, going to a ‘good’ university, getting a ‘good’ graduate job and climbing up a ‘good’ corporate ladder works for everybody. We’ve never actually taken a minute to stop and consider whether the education system works for everybody, the workplace works for everybody or a capitalist society in general works for everybody – and that has meant that, for many of us, it doesn’t.

This is damaging for everyone – because we all have brains that work in different ways – but it is especially damaging for neurodivergent people. We are some of the worst affected by a society and a workforce that forces people into a box – because that box is set up for people with brains that literally don’t work in the same ways that ours do.

Conforming to ‘the box’, before I discovered that I was an autistic ADHDer, meant trying to force my brain to work in the opposite way to how it needed to – which, obviously, was going to hold me back from doing my best work. This, for me, had a very dramatic effect. It’s the reason that, pre-diagnosis, I was never able to hold down a job for more than a year – because, without knowing, I was burning myself out every second of every day just by turning up at work. I forced myself to work forty-hour weeks – even when it came at the expense of eating, socializing, or having any hobbies and left me having to go home and sit in a dark room after a long day of masking. I gritted my teeth and plastered on the ‘customer service character’ – even when it felt physically painful to hold my face in such a fake smile and alter my naturally blunt tone of voice. I muddled my way through phone calls and meetings – even when it felt like the information was going in one ear and out the other. I was so busy making sure that I ‘seemed interested’, by nodding my head and saying the right things at the right times, that it took up all the brain space that I needed to actually process the information. I was, unknowingly, forcing my brain to work in the opposite way to how it needed to, which, as well as holding me back from reaching my potential, was using a whole lot of extra energy in the process.

Being forced into a neurotypical way of working leaves a lot of us feeling like we have to hide who we are and what we need in order to survive, be accepted and feel included. A common experience that other late-diagnosed people have shared in the (un)masked community, and that I have seen many neurodivergent creators speaking about online, is how they are or were constantly surrounded by the feelings – of shame, that something is wrong with us, that we are lazy, broken, or a bad person – that come from experiences in the workplace.

However, after escaping the 9–5 following my lightbulb moments, and after gaining a new perspective on the way that we, as a society, work thanks to my consultancy and public speaking work, and after learning how to work with my brain rather than against it, I now know that it is not actually us that are failing. It’s the system.

We’re not the ones that are broken. The system is.

We’re not the ones that are damaged. Society is.

We’re not the things that need fixing. Our workplaces are.

The ways in which the majority of our workplaces currently function don’t account for the fact that we are all different people with different brains that work in different ways – whether that’s neurodivergent people specifically, or diverse workforces as a whole. It is not only neurodivergent people that ‘lose’ because of this homogenous system – everyone does. And ironically, companies lose, too: research shows that ADHDers are often highly creative, divergent thinkers,3 meaning they often outperform non-ADHDers and are more likely to find a correct solution to a problem. This means that, by failing to accommodate these divergent thinkers, companies are missing out on problem-solving potential.

On top of this, if employees are using up brain space and energy by monitoring and adapting the ways that they work and behave to conform to a culture that doesn’t suit them, this takes away from the brain space and energy that they have available to actually get the job done. I spoke to Professor John Amaechi OBE,4 New York Times best-selling author and founder of APS Intelligence, who said, ‘We each have a finite amount of energy to spend each day. Holding on to feelings of anxiety – when we feel we have to hide our true selves – uses up some of that limited energy. When we feel real inclusion, our anxiety levels reduce again, and if that energy is not being used on anxiety, it can be dedicated to progress. Inclusive teams will always win – because energy can be focused on the right and important things.’

A capitalist society that, generally speaking, puts profit ahead of people means that workplaces can be rigid and homogenous, and can tend to put us in boxes and treat us as if we are all the same. Naturally, this is not going to get the best out of us:

It’s not going to identify our unique gifts.

It’s not going to give us the chance to come up with unique ideas.

It’s not going to allow us to reach our full potential.

Understanding, accepting and embracing the way that my brain works changed my career and changed my life – and if all employers and workplaces could learn to accept and accommodate differences, we could make the workplace a lot more inclusive, more flexible, more comfortable, more enjoyable, and more rewarding for a lot more people.

As I stated in the introduction to this chapter, at the time of writing, only 22% of autistic people are in any sort of paid employment, even though 77% of those who are unemployed state that they want to work. A lot of that unemployment comes from bias and stigma – disabled folks not being selected for jobs after disclosing their disabilities, or because of their differences – but it also comes from the workplace just not being set up for people like us.

But it doesn’t have to be complicated …

Imagine a workplace where, at your annual review, instead of being told about the parts of your job you were struggling with and being given a plan to improve those bits, you were actually celebrated for the things you were doing really well at and given a plan to do more of those things and get even better at them. Imagine a workplace where your employer would highlight, ‘Ah, Ellie is the best person in our team for coming up with ideas – so why don’t we let her work four hours a day in brainstorming meetings, and have the other four hours of the day to do things that get her creative juices flowing so she can turn up the next day with even more great ideas – instead of forcing her to sit behind a desk for eight hours a day doing things that she’s not quite as great at, and that actively take away from her ability to be our best ideas person?’

Imagine a workplace where, whenever possible, the whole team sat down and worked out each other’s strengths, weaknesses, loves and hates and then divided up the jobs so that everyone was doing more of the things they were good at and passing on the things they weren’t so good at to somebody else who had highlighted those things as one of their strengths.

Imagine a workplace where we aren’t all expected to work Monday to Friday 9–5, but to work mornings if we are morning people, evenings if we are evening people, long days with lots of breaks if we prefer to work in a slow and steady way, and short days of intensity if we prefer to work in sprints and not marathons. In a world where asynchronous working is made possible by technology, there is no reason why non-customer-facing roles should all need to be in the office at the same time as one another. More companies could move in the right direction by having reduced ‘core hours’ that the whole team works, and allowing flexibility for the remaining hours outside of those – this flexibility is much more beneficial for neurodivergent workers.

It genuinely baffles me that more workplaces haven’t come to these conclusions themselves and realized that making these changes, and being more inclusive and accommodating of each individual person’s needs, would be better for each and every one of us. It would be better for the companies’ pockets, profits, and employee retention rates, as well as being better for employees’ mental health, fulfilment and potential. Businesses wouldn’t just be helping us – they’d be helping themselves, too.

It’s also important to point out here that all teams are neurodiverse – whether you have people in the team that have disclosed their disabilities or not. Firstly, because neurodivergent people are more common than you think – they might be undiagnosed, or they might just not have shared their diagnosis with you, which is completely down to their own personal preference and how safe and supported they feel to do so. And secondly, because even neurotypical people have brains that work differently than one another. Neurodiversity includes each and every one of us as a society. Just as no two stars in the sky are exactly the same, no two minds work in exactly the same way, either.

Examples of accommodations that you could ask for

So now you’ve (hopefully) realized that you are not the problem, you might feel a little bit more confident in asking for the accommodations that you need. But for a lot of us, especially those of us who spent such a long time undiagnosed, it can be hard to know where to start. We have gone our whole lives without any extra support, so it can be hard to work out:

What is reasonable for us to ask for.

What options are available to us.

Which things we actually need support with.

What could help us with those things.

There might even be a bit of imposter syndrome that sneaks in here, too – something along the lines of, ‘I’ve made it this far without any accommodations, so do I actually really need them?’ Or, ‘I’ve survived working forty hours a week up until now (even though that meant that I wasn’t able to eat, socialize or look after myself properly), so I’m sure I’ll be fine to just carry on!’ If these thoughts do start to pop into your head, take a second to reframe them. Stop thinking, ‘I’ve survived up until now without accommodations, so maybe I don’t need them,’ and start thinking, ‘I am finally getting access to the support that I have always needed and deserved.’ (I know. It is much easier said than done, and sometimes even I still feel like a drama queen when asking for accommodations. But, over time, it does get easier, I promise.)

Over the following pages, I’ve shared some examples of reasonable adjustments that you could ask for. It is not an extensive list, but it will hopefully get you started.

Subscriptions/services/technology:

Name
Explanation
What it helps with

Otter.ai5
Software that records and transcribes your virtual meetings in real time. You can also upload video and audio files for transcription.
Focus – you’re not having to worry about taking notes during a meeting, so you can just focus on listening and being present.

Auditory processing – if you struggle to absorb verbal instructions, you can check back on the written transcription.

Grammarly6
Browser plug-in that checks your work for spelling and grammatical errors.
Attention to detail – it can be easy to miss little mistakes when your brain works at 100 m.p.h.

Dragon7
Speech recognition software that transcribes as you speak.
Hyperactivity – you can move around while speaking your work aloud instead of being stuck sitting still to type.

Closed captions on Google Meet8
Google Meet has a feature for real-time closed captions on virtual calls.
Auditory processing – if you struggle to absorb information verbally, you can follow the captions.

Dictaphone
Old school! A device that you can speak into and record your thoughts.
Short-term memory – you can quickly record your thoughts before they pop back out of your brain as quickly as they arrived.

Digital notepad
An iPad, tablet, or the ReMarkable digital notepad to keep your handwritten notes stored digitally.
Organization – keep all your notes in one place instead of losing scraps of paper.

Noise-cancellation headphones
Either headphones that you can listen to music/calls through or even just earplugs/ear defenders.
Sensory overload – block out all that unnecessary and overstimulating noise.

Non-tech products/services:

Visual timer
Another old-school one – a visual countdown timer. You can also use apps like Tiimo9 for a digital option.
Time blindness – keep track of how long you are spending on a task.

Stim toys
Stim or fidget toys come in many different shapes, sizes and styles – but they’re essentially small toys that you can fidget with or that have a nice texture!
Hyperactivity – fidget toys are handy for ADHDers as they keep your hands busy and let out some of that hyperactivity.

Stimulation – as above, keeping your hands busy can add a little bit of extra stimulation if you’re sitting still in an office or meeting.

Self-regulation – autistic people use stim toys as a way to self-regulate or self-soothe. The sensory input from the texture or the repeated movements can help you to feel regulated in an often out-of-control world.

Sitting/standing desk
A height-adjustable, motorized desk that can be changed from sitting height to standing height.
Stimulation – lets you move around while you’re working so you can stay focused.

ADHD coaching10
An ADHD coach can help you to stay accountable, achieve your goals and teach you organizational strategies.
The whole ADHD experience – honestly, this one has been a game-changer for me (shoutout to my ADHD coach Leanne)! I even trained to become an ADHD coach myself after seeing how much this helped me – you can find my details at the end of the book if you’re interested in joining an upcoming group coaching session!

Accessing accommodations

If you’re in the UK, all the above accommodations can be funded by the Access to Work scheme.11 Access to Work is a government programme aimed at supporting disabled people to take up or remain in work. Both ADHD and autism are included in the scheme, and you can even apply while you’re still on the waiting list for a medical diagnosis. It can sometimes be a bit of a long wait, but once the wait is over, the support you can access can make a huge difference! The process, put simply, usually goes like this:

1. Apply via the government website.

2. Wait to hear back from a key worker from the Department of Work & Pensions.

3. Be referred to a private provider for a workplace assessment.

4. Receive a full report of the support you’re entitled to.

5. Your employer will pay for the support you need.

6. Your employer can then claim the money back from the government.

You can also qualify for Access to Work funding if you are self-employed – they will even cover a support worker to help with admin tasks if you’re a self-employed ADHDer.

We have a full (un)masked eGuide on how to apply for Access to Work12 that you can find on our website, and there are plenty of people in the (un)masked community that have been through the process themselves and have shared their experiences and tips.

Accommodations that don’t come with any cost

As with many experiences that come after realizing that you are neurodivergent, the thought of accessing and paying for accommodations or adjustments can feel quite daunting. It’s really important to remember that so many of the things that can make the workplace more accessible to you are free, easy to access, and quick to implement. Hopefully, you will feel comfortable in asking for these things, and the fact that they don’t require funding also means that you can implement them (or ask for them to be implemented) without having a specific diagnosis. If you’re a manager or colleague of neurodivergent people, these things are super easy for you to implement for the people around you, so please try to wherever possible!

Timings:

Flexible working hours to account for breaks and rest periods.

Shorter working hours to account for the fact that you can achieve double the amount that most people can while you’re hyperfocusing, but that you then need time to recover.

Arriving and leaving the office slightly earlier or later than everybody else so that you can avoid commuting during busy rush-hour periods, and arriving at a chaotic office.

Working, for example, four ten-hour days instead of five eight-hour days so you can have an extra day off mid-week (or at any time that feels best to you) to decompress.

Working set shifts (if you work in hospitality/retail/shift-based jobs) so you can maintain structure.

Moving your lunch break to a less-busy slot to avoid sensory overload from lots of noises, smells and busyness.

In the office:

Having a desk that is located in a quieter part of the office to avoid sensory overload.

Requesting a permanent, allocated desk rather than hot-desking so that you can have a safe, consistent environment.

Sharing an office with a colleague rather than working in a room to yourself to help with body-doubling, a productivity technique where an accountability partner works alongside you, either in the same room or virtually through video chat platforms.

Having a more relaxed dress code to avoid uncomfortable-suit-based sensory overload.

Having an allocated quiet space that you can visit when you need to decompress.

Having the flexibility to work from home or hybrid work.

Working relationships and communication:

Requesting written agendas ahead of all meetings.

Asking for all instructions on a What by When and Why basis:

— What exactly do you need from me?

— When exactly do you need each of those things by?

— Why exactly do you need each of those things to be done?

Having regular meetings with your line manager – and, where possible, a manager with an understanding of neurodivergence.

Things that workplaces could (and should) be doing to be more inclusive

As I mentioned in the introduction of this chapter, a lot of the work I do also involves going into companies and telling them some of the things that they could be doing, across the board, to support their neurodivergent colleagues and employees. Often, I find that companies want to help but just don’t know where to start – and the people I speak to are usually shocked at just how simple so many of the things that can make such a huge difference are to implement.

I think it’s really important to remember that a lot of the people that need, deserve, and would benefit from accommodations don’t actually know that they need them. If, two years ago, I had worked at a company that had offered all the above accommodations for autistic people or ADHDers, I wouldn’t have asked for them … Because I didn’t know that I was neurodivergent! According to ADHD Action, it is estimated that there are 1.5 million adults with ADHD in the UK, but only 120,000 are formally diagnosed13 – that’s just 8%! With so many adults remaining undiagnosed (see Chapter 5: The Lost Generation for more on this), it is vital that businesses make accommodations available to everyone – regardless of whether they have had their lightbulb moment yet.

It is also helpful to have a list of available accommodations, in the style of a ‘menu’, for people to choose from (please feel free to take inspiration from the list above!). This reduces the uncertainty that people might feel about what is reasonable to ask for and what is possible, and will also help to make them feel less anxious about asking to be accommodated. It can take a lot of bravery to, out of nowhere, stand up and say that you need X, Y and Z – especially if you are only just coming to terms with a new diagnosis or have worked in the job for a while without the adjustments that you needed. Having a Menu of Accommodations not only takes away the pressure on the neurodivergent person to start the conversation, but also lets them know that it’s okay to ask for what they need and that they’re not going to be judged for needing a little extra support.

Here are some changes that companies could (and should – employers have a legal obligation to provide reasonable accommodations to their neurodivergent and disabled employees) be making across the board:

Flexibility

It is important to remember that 100% doesn’t look the same for everybody. As an autistic ADHDer, I’ve learned that I work in sprints and not marathons. I physically cannot sit behind a desk for forty hours a week, but that doesn’t mean that I will achieve any less than anybody else in the team – because when I am working, I work at double the speed of most people. Everybody in your workforce will have different ways of working; letting each person work in the way that feels best for them is ultimately what will result in the best work.

Flexibility to work from home or hybrid work rather than being in the office full time.

Flexibility in working hours.

Outcome-based goals instead of time-based requirements, i.e. ‘If you get your required jobs done by 3pm, then feel free to finish.’

A slightly different one, but a reminder to make it very clear to people that mental health/recovery days are to be taken as sick days and not holidays.

Some companies have been resistant to taking more of a hybrid approach like this because they are worried that it may reduce the productivity of their teams. In reality, though, this isn’t the case. A Stanford University study on call-centre employees14 showed that home working led to a 13% performance increase, of which about 9% was from working more minutes per shift (fewer breaks and sick days) and 4% from more calls per minute (attributed to a quieter working environment). Home workers also reported improved work satisfaction and experienced less turnover.

The pandemic saw us all having no choice but to work from home and further proved that it is possible for employees to remain productive without physically being in the office. Great Place to Work compared employee productivity from March to August of 2020,15 the first six months of stay-at-home orders, to the same six-month stretch in 2019. Productivity was stable or increased when working remotely from home, according to a two-year study of 800,000 employees.

Interestingly, a 2021 University College London study which explored the effects of the Covid-19 pandemic on the mental health of autistic people16 found that, although there was a long list of reasons for worsening mental health among the participants during this time, many autistic people also felt as if there had been a weight lifted off their shoulders. They weren’t having to go out to work or socialize and therefore weren’t having to mask or camouflage as much, which eased some of their anxiety.

Communication

In the same way that each person in your workforce will have their own unique ways of working, they will also have their own unique communication styles. Some people prefer emails, some prefer phone calls, and some prefer WhatsApp or other online communication systems like Teams or Slack. Some people are auditory learners and will need instructions to be given to them verbally, whereas some people struggle with auditory processing and need instructions to be given in black-and-white - this is true for all colleagues, not just neurodivergent ones!

1. If in doubt, ask!
– Ask each person their preferred learning styles and communication methods, and then use them. If people aren’t sure, there are templates online, such as Manual of Me, that can help.

2. Cover all bases
– Make sure any instructions that anybody might need are available both verbally and in a written format. If you’ve had a meeting, follow up by sending an email with the key points and actions. If you’ve sent somebody an email, ask them out loud if they need anything clarifying.

3. Clarity is key
– Make sure instructions are clear and specific. Avoid phrases like ‘touch base’ and ‘circle back’ – they don’t make any sense. Give all instructions on a What by When and Why basis:

– What exactly do you need from somebody?

– When exactly do you need each of those things?

– Why exactly do each of those things need to be done?

4. Be transparent
– Ensure all company information, policies, processes, and progression plans are transparent, specific, and readily available.

Sensory-Friendly

The office can be a sensory nightmare for neurodivergent people. There are lots of clashing sounds and smells, the lighting is typically very bright, and it can be very busy. Do what you can to minimize the sensory input that people are exposed to and, therefore, the risk of sensory overload.

Keep the main office space quiet and ask people to go to a separate space to take calls/host meetings.

Ask people to listen to music via headphones rather than having the radio playing out loud.

Have a dress code that allows people to wear clothing they feel comfortable in.

Ask people to go to an allocated space to eat their lunch to avoid there being lots of different smells in the working space (I’m looking at you, tuna sandwich!). If the main canteen is too noisy and busy, provide a silent lunch zone, too.

Create a designated sensory space for people to decompress when things get too much. I’m picturing dim lights, bean bags, stim toys and some white noise – the Google Xi Days event in New York that I was lucky enough to speak at was a great example of this, as it had all these things, along with generally reduced lighting across the conference, and a specifically designed scent to help with focus!

Where possible, avoid fluorescent lighting and make the most of natural light.

Minimize surprises

Neurodivergent people, especially those who are autistic, can struggle with being caught off-guard. The more that you can warn us about things, prepare us for things, and share things with us in advance, the better the response you will get from us and the less anxiety you will cause us to feel.

Provide written agendas ahead of all meetings. Bonus points if you can share the material you will be covering so that people can read through it ahead of time.

Provide interview questions for new candidates ahead of time and also ask if they will need any accommodations during the interview.

If you message somebody asking them if they have a moment to speak, add something like ‘Nothing bad!’ at the end. This instantly stops people becoming anxious and wondering what they might have done wrong.

If you need to call somebody out of the blue, pop them a quick message beforehand asking if they are okay to speak and providing a bit of context about what the call will be about.

Checking your bias

A lot of the things that we have been told make a ‘good employee’ are actually based on ableist standards. Check your biases and make a conscious effort to accept people for who they are, even if that looks a little bit different to what you’ve been taught to expect.

Don’t judge an interview candidate on their ability to make ‘good eye contact’ or introduce themselves with a firm handshake. Those things, generally, will not affect their ability to do the job – so why do they matter?

If somebody doesn’t want to attend company socials, nights out, or Christmas parties, that doesn’t stop them being a valued member of the team. It could just be that an office day is all that they have the capacity for and that they then need to go home to decompress.

Remember that just because somebody isn’t the loudest person in the meeting, that doesn’t mean they don’t have anything to say. They might need longer to process, or they might feel more comfortable sharing their thoughts via email afterwards.

I think a lot of the reasons that employers push back on, or at the very least hold back from, making more of a conscious effort to be inclusive are because they hear the words ‘accessibility’ and ‘inclusivity’ and presume that the required changes would be expensive, complicated and lengthy. They envision having to rip up and redesign the office, implement entirely new processes and spend mountains of money on expensive software. But, as you can see, most of the changes that have the potential to make the biggest difference to neurodivergent people are free, quick and simple. They’re not groundbreaking – in fact, they are mostly just rooted in kindness, clarity and common sense.

—
Recap

In this chapter, we have explored:

Why it is not neurodivergent people that are the problem but the workplace itself.

Some of the things that you could ask for in order to be accommodated as a neurodivergent person.

The things that all businesses should be doing, across the board, to get the best from neurodiverse teams.

It’s important to remember that ALL teams are neurodiverse – because neurodivergent people are more common than you think, and even neurotypical people have brains that work differently from one another.

Your takeaway box

Reframe your thoughts around accommodations

Don’t let your brain trick you into thinking that, because you have made it this far without any support, you either don’t deserve or don’t need to be supported going forwards. Instead of thinking, ‘I’ve made it this far without accommodations, so maybe I don’t need them,’ replace the thought with, ‘I am finally getting access to the support that I have deserved the whole time.’ Being accommodated doesn’t make you any less capable or mean that you’re getting a leg up – it just means that the playing field is finally being levelled to make the workplace just as accessible to you as it is to everybody else.

Make a plan

Remember that most of the accommodations that can make a huge difference to neurodivergent people are free, quick and simple – so you don’t need to feel ‘bad’ about asking for them! Try writing a list of the things that you think might help you, starting off with the ones I have shared in this chapter and adding any other things that you think of along the way. Once you see them in black-and-white and see just how little you are actually asking for, you might feel more confident in taking them to your manager.

Fix the system, not the person

As an employer, colleague or manager of neurodivergent folks, remember that putting into place those general best practices across the board can make a huge difference. It takes the pressure off the marginalized person to advocate for themselves, it means that everyone can benefit from the accommodations whether they are diagnosed or not, and it lets people know that it’s okay to ask for support and adjustments when needed.

10

Late Diagnosis and Mental Health

Content warning:

This chapter digs pretty deep into the links between neurodivergence and mental health, some of the reasons why we might suffer with our mental health, and also mentions suicide. These topics may be triggering for some readers – please only read if you feel ready and safe to do so, and please take your time and go at your own pace. If you need support, please contact a loved one or support line.

The statistics surrounding ADHD, autism and mental health are shocking, to say the least – especially in women and people marginalized for their gender, who, as we explored in Chapter 5: The Lost Generation, are more likely to be undiagnosed, misdiagnosed or late-diagnosed. Research suggests that 23.5% of women with ADHD have attempted suicide,1 compared to 3.3% of women without ADHD, and, according to a 2016 study, autistic women are thirteen times more likely to die from suicide than non-autistic women.

But it doesn’t have to be this way. There are multiple factors that result in people struggling with their mental health, and my hope is that by making society more inclusive of neurodivergent people, we can start to reverse these troubling statistics.

In this chapter, we’ll explore:

My story with the mental health system.

ADHD and mental health.

Autism and mental health.

What we need from society.

What you can do to support yourself.

To grow up as an undiagnosed autistic person or ADHDer is to spend a lifetime being gaslit, ostracized and misunderstood – it is only natural that our mental health would suffer as a result of that.

Medical diagnosis is currently a privilege, when, in order to support the mental health of the neurodivergent community, it must be a right.

My story with the mental health system

My first experience of the mental health system was at the age of fifteen. I’d started having what I was told were panic attacks a couple of years earlier, but had always been sent away from appointments with my GP with little more than a list of breathing exercises to run through when things got overwhelming, and I’d also had a couple of very brief counselling sessions with the school nurse. At fifteen, though, things had ramped up a notch; I was frequently feeling overwhelmed, tearful, lost, and having more and more of these panic attacks. I’d had a couple of GP appointments in which I was told that there was not much that they could do to support me, but, after a lot of advocacy (read: arguing my case) from both my mum and me, the GP agreed to refer me to CAMHS – the NHS Children and Adolescents’ Mental Health Service. To be quite honest with you, a lot of my time at CAMHS (and a lot of my life around this period) is pretty blurry to me. I’ve blocked most of it out, in what I now know to be both a survival mechanism and a trauma response, but, from what I do remember, I spent a lot of my time under CAMHS care feeling grossly misunderstood.

I must point out here that I was extremely privileged with the level of care I had access to via the NHS – and, now more than ever, many aren’t so lucky. In a recent YoungMinds survey, it was discovered that more than one in four young people (26%)2 said they had tried to take their own life as a result of having to wait for mental health support. More than four in ten (44%) waited more than a month for mental health support after seeking it, and almost one in ten (9%) young people were turned away. So in even being able to access CAMHS services, I was very lucky. However, that, unfortunately, doesn’t mean that the services fulfilled my needs.

Throughout my time under CAMHS care, I saw a psychiatrist, a key worker, a psychologist and various mental health nurses. I trialled CBT (Cognitive Behavioural Therapy), Mindfulness, RODBT (Radical Openness Dialectical Behavioural Therapy), EMDR (Eye Movement Desensitization and Reprocessing) and Hypnotherapy; none of these interventions seemed to help me feel any better for any considerable amount of time, though. I had been diagnosed with Generalized Anxiety Disorder, Anxiety Related Depression, Agoraphobia and Panic Disorder, and, by the age of seventeen, I was housebound, extremely overwhelmed, almost permanently tearful, sometimes unable to speak, a high school dropout, and on the highest dosage of antidepressants that are allowed to be prescribed.

In spite of this, no one ever really seemed to stop to consider why I might be feeling the way I was, or what might be going on behind the scenes. It seemed to be more of a case of sticking a plaster over the symptoms I was having, rather than taking a look inside and working out what was causing me to have them in the first place. When I watched Christine McGuinness’s recent BBC documentary, Unmasking My Autism,3 I felt completely overcome with emotion when learning how many others had shared my experience and felt the same way that I had. Both Christine and some of the incredible people she spoke to on the show shared how, similarly to me, they had been handed a mental health diagnosis without anyone ever considering that neurodivergence, or specifically autism, might be an underlying factor in the things that they were going through.

I remember several occasions of sitting in my mum’s car outside our local health centre, crying uncontrollably and begging her not to make me go in to my session with my key worker (sorry, Mum – I know that can’t have been nice at all). I remember telling her that, after tiring of desperately trying and miserably failing to make myself heard, I always ended up just telling them what they wanted to hear, anyway, and so the appointments felt as though they were more for their benefit than mine. For example, I can remember when my key worker had tried hypnotherapy with me, but I was not in a place to let it work for me – so I eventually just pretended that it had worked and lay there, waiting for it to be over.

Now I know that a lot of the things I was struggling with were actually rooted in undiagnosed autism and ADHD, it’s interesting to consider some of these misunderstandings and where they came from. One example I speak about a lot, and that I mentioned earlier in the book, is that even as a young child I used to regularly say that I wished my brain would shut up, and that there were always loads of thoughts circling around my head. The CAMHS team took this to mean that I was experiencing anxiety; that the thoughts going around in my head were worries or anxieties, and that I was ruminating or catastrophizing. In reality, though, it was simply that I did always have lots of thoughts going through my head – because I had ADHD! The thoughts weren’t necessarily negative ones or worries; they were just never-ending, in high volume, and a manifestation of my internal hyperactivity, which is a classic ADHD trait. Similarly, when I became tearful and overwhelmed, they perceived that to mean I was having a panic attack, when, in reality, it was an autistic meltdown or shutdown – the result of having too many things going on at once, or of dealing with too much sensory input at the same time. People were trying to help me, but they were looking in the wrong places; I was sociable, conventionally pretty and female, so being neurodivergent wasn’t even a consideration.

Since getting my diagnosis and discussing my experiences with others, I’ve unfortunately found that I’m not the only one who has been through this. This goes to show that, yes, providing mental health support for young people is important, but more work needs to be done on understanding which experiences are actually those of anxiety and depression, and which experiences manifest in a similar way but are actually rooted in hidden or undiagnosed neurodivergence. In the book Safeguarding Autistic Girls,4 Carly Jones MBE runs through some of the traits of Borderline Personality Disorder (BPD) as seen through a medical/mental health lens, and explores how they could also be explained as the experiences of an autistic person when considered from an alternative angle. Below is a brief summary of some of the traits that I found really interesting to consider – especially as someone who spent a while convinced that they had Borderline Personality Disorder before coming across the world of autism and ADHD.

The trait
How it’s explained as a Borderline Personality Disorder (BPD) symptom
How it could be alternatively viewed from an autistic perspective

Emotional instability
People with BPD may experience a range of often intense negative emotions, such as rage, sorrow, shame, panic, terror, or long-term feelings of emptiness and loneliness.
Could rage be the result of an autistic meltdown? Could sorrow be explained by delayed emotional processing over a sad event that happened a while back? Could shame be the result of always being told that you’re getting it ‘wrong’ in social situations or of not being able to handle things the way that other people can? Could panic come from uncertainty and not having sensory needs or your need for control and structure met? Could terror come from a fear of past misunderstandings being repeated? Could long-term feelings of emptiness and loneliness be explained by being constantly excluded and repeatedly ostracized?

Disturbed patterns of thinking
Different types of thoughts can affect people with BPD, including upsetting thoughts, such as thinking you’re a terrible person or feeling you do not exist.
Could believing that you’re a terrible person come from a lifetime spent being told you’re naughty (when you’re not aware you’re doing anything wrong), a bitch (for simply communicating in the way that feels most natural to you), or manipulative (for literally experiencing sensory input in a different way to most people)?

Brief episodes of strange experiences
Someone with BPD might hear voices outside their head for minutes at a time. These voices might feel like instructions to harm themselves or others, and the person may not be certain whether the voices are real or not.
Understanding and being told that most people do actually have an internal monologue is vital for autistic people. If someone was to ask me if I heard voices, my answer, as a literal thinker, would be yes. I have a constant internal monologue – and a very hyperactive one at that as an ADHDer! So this question might get a ‘yes’ from an autistic person, even if they weren’t experiencing it in the same way as the clinical professional meant.

Prolonged episodes of abnormal experiences
Someone with BPD might experience hallucinations and distressing beliefs that no one can talk them out of.
Autistic people, as we know, often experience a heightened level of sensory input. I have heard stories of undiagnosed autistic children that have reported that they could hear conversations happening when nobody else could. Medical professionals thought that this was the child ‘hearing voices’ (i.e. hallucinating) when in reality, it was just that they could ACTUALLY hear voices – they were able to hear conversations happening in the room next door that other people didn’t have the acute level of hearing to pick up.

Autistic people also often report being able to hear the sound of electricity when a light or plug socket is turned on, and I, personally, can see light even with my eyes closed. Others, who don’t have this acute level of sensory processing, might think that we are hallucinating or being convinced of something disturbing – when we’re actually just sensing or processing things that others can’t.

Unstable relationships
Those with BPD may feel that other people abandon them when they most need them, or that they get too close and smother them. When fearing abandonment, they might feel extremely anxious and make frantic efforts to prevent being left alone, such as constantly texting or phoning a person, or suddenly calling that person in the middle of the night.
Could repeatedly texting or phoning someone come from either a hyperfixation on that person, or from not understanding the unspoken social rule that, if someone hasn’t replied, it might mean that they don’t want to talk? Could it be that the autistic person was love-bombed by that person, and that person had also texted them multiple times throughout the night, and that they are now just mimicking the person’s previous behaviour?

As you can see, the presentation of a trait or symptom itself is not always enough to decipher the cause of that experience, because the same behaviour could come from a different motive, root cause or place of understanding depending on what angle we look at it from. Add into the mix the fact that conditions like BPD and c-PTSD (Complex Post Traumatic Stress Disorder) are often caused as a result of ongoing trauma, and this gets a whole lot more complicated to navigate: what better example of ongoing trauma than spending a lifetime undiagnosed with an often debilitating disability, and feeling forever gaslit and misunderstood?

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Since my diagnoses, I have been in weekly therapy. It has been quite tricky to come to terms with just how much unresolved trauma I have to deal with from the years I spent undiagnosed. As someone who benefits from White privilege, cis privilege, socio-economic privilege, geographical privilege and pretty privilege, and has lived a relatively very comfortable and sheltered life, it can seem strange and feel uncomfortable to acknowledge that I have experienced trauma. I’ve always been supported, both emotionally and financially, by my family, I’ve never really wanted for anything, I always did well at school (until I dropped out because of what I now know to be shutdowns and meltdowns, of course), and there are parts of my life that I should, and do, feel very grateful for. But if I want to start to unpick my experience, and if I want to start to feel genuinely happy and comfortable in my own skin, I have got to learn to acknowledge that growing up with two undiagnosed disabilities was traumatic as hell. As I said in Chapter 5: The Lost Generation: If, as far as everybody around you is concerned, you are ‘fine’ or ‘normal’, but no matter how hard you try, you just can’t exist, achieve things, or look after yourself in the same way that everybody around you seems to be able to, then after a while it is inevitable that you will start to believe you are broken, damaged, or just plain rubbish.

High school, especially, for me, was awful. Truly awful. There’s no other way to put it. I had no idea what was ‘wrong’ with me; I just knew that, for some reason, I seemed to irk every single person that I spent any considerable amount of time with. As I talked about in the previous chapter, because I was someone with pretty privilege, my teenage years were a constant cycle of being invited into social situations that I didn’t have the skills to navigate, and then being scolded, rejected and ostracized with no idea what I did or said wrong. The girls I was supposedly friends with left me out, booked a holiday where I was the only person from our group not invited, posted about me on the internet, spread rumours about me, and repeatedly made me feel as though I must be the worst person in the entire world to warrant being treated the way that I was.

Even though I might seem a million miles away from that now, and in a much stronger place to be able to speak and write about my own experiences, this period of my life has left permanent scars. I have had to make a conscious choice to remove and unfollow everyone that I went to school with on social media, because even just seeing a picture of them on my feed can trigger me and cause all these unresolved feelings of panic, dread and intense loneliness to reappear. Thinking about my time at school makes me feel so weird (weird is definitely not the most accurate choice of word, but the alexithymia is kicking in here and making it tricky to identify how it actually makes me feel – and that’s okay!), because it has been eight years since I dropped out of school, and I, more than anyone, am well aware that people can massively grow and change in that time. But it makes me feel really sad and resentful that undiagnosed neurodivergent people like me suffer doubly, firstly from the trauma of not understanding themselves, and secondly from the trauma caused by the actions of others who don’t understand them either, the repercussions of which can be felt for years, if not whole lifetimes.

All this goes to say that, if you’ve also previously been told that you were experiencing anxiety and depression and are now coming to understand that you might be neurodivergent, or are just dealing with a late diagnosis, you might also be experiencing mixed emotions of validation, but also grief for your past self. If so, you’re not alone. To grow up as an undiagnosed autistic person or ADHDer is to spend a lifetime being gaslit, ostracized and misunderstood. It is only natural that our mental health would suffer as a result of that, and it is no wonder that it might leave behind some stuff that needs to be processed and worked through. I would strongly urge you to seek support both from loved ones and from a therapist if you’re able to – specifically one that has experience with neurodivergence, ideally – and I’ll share some more tools that might help later on in the chapter.

ADHD and Mental Health

When we consider the additional barriers that ADHDers face in employment, relationships, and society in general, it is not surprising that so many ADHDers also suffer with their mental health. It has been suggested that 70% of people diagnosed with ADHD may also experience depression in their lifetime5 – and this doesn’t even take into account all of the people that go undiagnosed and unsupported.

As we explored in Chapter 4: Translating ADHD Traits, studies have shown that all the way from childhood, ADHDers receive many more negative comments than positive ones, and than their non-ADHD peers. Are we really surprised that a community that receives fifteen times as many negative comments as positive ones throughout their developmental years might struggle with their mental health or self-esteem? On top of this, it has been suggested that people with ADHD have had to put in 500% more effort than average throughout their childhood6 and exams – but they just assumed that everyone had to work as hard as they did.

Add all this together, and it paints a pretty clear picture as to why ADHDers might struggle so significantly and in such vast numbers with their mental health – constantly trying five times as hard as everyone around you, yet receiving a heck of a lot more criticism. This feeling often persists through adolescence and into adulthood: a feeling of always burning yourself to the ground because you’re trying so hard, but, despite your best efforts, never quite being good enough. Further to this, the charity ADHD Aware shared this insight into the direct impact that a diagnosis can have on one’s7 mental health:

It’s important to understand that mental health problems arising from untreated, unmanaged and, often, undiagnosed ADHD are often ‘secondary’ mental health problems and will abate when ADHD is treated – meaning focusing on ADHD is key. Secondary mental health conditions get worse when ADHD, the primary condition, is left untreated and get better when ADHD is treated.

For example, someone who breaks their legs in an accident may become depressed because they are suddenly unable to walk or live the life they want. They undergo physical therapy and recovery, and, when they are able to walk again, their depression lifts. In this case, the primary condition is a leg injury, and the secondary condition is depression arising from the impact of the primary condition. In the same way, someone who is struggling with executive dysfunction, impulsivity, hyperactivity and inattention may be impaired and unable to live the life they want, and experience a secondary mental health issue like depression. When they are given an ADHD diagnosis and education about their condition, alongside coping strategies, support, medication options and therapy options, core issues of ADHD can reduce. The person will be empowered to live the life they want and no longer experience their secondary mental health issues.

This example explains an ideal scenario in which the cause and effect is very clear – and we know that we don’t live in an ideal world – but it helps us to consider why the difficulties that come with living as an ADHDer might cause someone to struggle with their mental health, too. These difficulties are widespread, including the fact that:

Adults with ADHD are more likely to end up in prison, as explored on page 117.

People with untreated ADHD are twice as likely to have been fired from a job,8 compared with people without ADHD.

About 25% of adults being treated for alcohol and substance abuse9 are thought to have ADHD.

Adults with ADHD are far more likely to struggle with finances, as discussed on page 117.

ADHDers are more likely to get divorced10 than those without ADHD.

A study found that 32.2% of students with combined type ADHD drop out of high school,11 compared to 15% of those with no psychiatric disorder.

Essentially, although being an ADHDer comes with its strengths, it does mean that you’re dealt a trickier hand when it comes to living in a neurotypical society – hence ADHD being a disability – and this, naturally, can lead to struggles with your mental health. However, I hope that if you can relate to this in any way, you can see you aren’t alone and that there is a way through it.

Autism and mental health

As you can imagine, there is a similar story when it comes to the experience of living with any undiagnosed neurodivergence, including autism, but there are differences when it comes to this particular disability. And, of course, it’s not hard to imagine how the mental health of someone unknowingly living with both might be doubly impacted. Autistic people are at a higher risk of developing mental health challenges such as anxiety, depression, and suicidal ideation. It is believed that around 70% of autistic people experience mental health challenges in their lifetime,12 with anxiety disorders being the most common co-occurring mental health condition, affecting an estimated 40–50% of individuals. Depression is also disproportionately common among the autistic community,13 with rates estimated to be as high as four times that of the general population. So it’s incredibly important that we look at why this is, and what we can do to stop it.

In the week that I was writing this chapter, an incredibly tragic story entered the news that highlighted just how important it is that we, as a society, learn to better accommodate and support autistic people and their mental health. In April 2023, Caitlyn Scott-Lee, a sixteen-year-old student at Wycombe Abbey, one of the UK’s most prestigious boarding schools, made headlines after she devastatingly died by suicide on campus.14 It was reported that she had been due to receive a two-hour punishment, known as a ‘headmistress’s detention’, just hours after she took her own life. She had written a diary entry the night before expressing her intention to end her life, and her father shared that ‘She was mortified to receive a detention … Caitlyn seemed hyper-fixated on the concept, and it seems she was determined to do anything she could to avoid it.’

This tragedy was very hard-hitting for many of the community, and it felt scarily close to home for me personally. Like Caitlyn, I also attended a boarding school for some of my teenage years, and being confronted with this news, I can look back now and see that, like Caitlyn, I was also massively let down by the support I received as a student during my time there. I attended a boarding school on an academic scholarship from school years 10 to 13, between the ages of fourteen and seventeen. I was undiagnosed throughout my time at the school, but was receiving CAMHS support, and had obvious mental health struggles and social difficulties. During my Sixth Form years, especially, I was bullied extensively by the girls in my year, as I touched on earlier in this chapter, and in Chapter 8: Ableism and Pretty Privilege. This bullying got to the point where I was so upset that I didn’t want to go to school. I was so lonely, so ostracized, and always feeling like the odd one out had begun to have a huge effect on my mental health.

I eventually ended up dropping out of Sixth Form, but, in a last attempt to resolve things, my mum came into the school with me to talk to a member of the pastoral team about what had been going on and to try to find a solution that would allow me to move forward with my studies, and feel some level of happiness (or at least be comfortable) in my school environment. You would hope that as someone in a pastoral position in a school, they would have been responsive to what was going on and tried to support me while I was being bullied. Unfortunately, though, this wasn’t the case.

When my mum and I explained what had been going on, the response we were given was that, ‘Ellie often says things that she doesn’t realize are rude to the other girls, so she can’t really get annoyed if other people are rude to her.’ The example given to explain this was that I’d said, in front of the other girls, that I was upset that I’d got an A in a mock exam when I was hoping for an A*. Now, for somebody in a pastoral role, I find it shocking that it wasn’t obvious that this was an autistic trait. I was an A* maths student who hadn’t realized that complaining about their grade might come across as rude – it couldn’t have been more stereotypically autistic! But aside from this complete failure in duty of care, I look back and feel shocked that anyone, particularly in a role where students’ welfare is their primary concern, would ever look at a mentally struggling, socially vulnerable young teenage girl and assume that they were being rightfully bullied by their peers.

I think this is a clear example of how intolerant neurotypical people can be of autistic behaviour (specifically our struggles in understanding social cues and our matter-of-fact and literal communication style) and the result that such intolerance can have on autistic people’s mental health. In a 2017 study, researchers found that neurotypical people are quickly and subconsciously able to identify that a stranger is autistic, often within milliseconds of meeting them. They don’t realize that they’ve identified the person as autistic, though; they just think that the person is ‘weird’. The study showed that they then become less interested in engaging in conversation with the autistic people, and state that they like them less than the non-autistic participants. This is all decided based on one brief moment of social data – their judgements were solely determined by a first impression. What I find even more sad is that the autistic people in the study didn’t do anything ‘wrong’; both their behaviour and the content of what they were saying were perfectly socially appropriate. As Dr Devon Price explains in a soundbite from the Unmasking Autism audiobook that went viral on social media, ‘Though they tried their damnedest to present as neurotypical, their performance had some key tells, and was just slightly “off”, and they were disliked because of it.’ Applying this study to my situation, it feels as though a pastoral member of staff at my school failed to empathize or sympathize with a student in their care that was being bullied, simply because they found that person quite unlikeable themselves.

In her final diary entry, Caitlyn Scott-Lee wrote: ‘Running away was the best cry out for help I could give, and you [the school] responded with “we’d normally punish you, but you’re already getting punished”.’ Like me, she had desperately tried to communicate her struggles and her needs to the school, but her attempts had been ignored, downplayed and misunderstood, and it resulted in the most tragic outcome.

The story of Caitlyn’s untimely death and the reported lack of support and care from her school and mental health team just shows my experience was not a one-off situation – it is a systemic lack of mental health support for neurodivergent people within the private education system, the education system as a whole, and society in general.

Autistic people are simply not supported in the way that we need to be, and I believe a major reason for that is because neurotypical people don’t warm to us in the same way that they do other neurotypical folks, and because they don’t understand our needs.

One study found that approximately 66% of autistic adults reported having had suicidal thoughts15 at some point in their lives, and 35% had made a suicide attempt. These numbers are absolutely devastating, and, alongside Caitlyn’s story, show how much society needs to learn to better understand and support the autistic community.

What we need from society

As I have touched on in every chapter of this book, so much of what we need from neurotypical people comes down to understanding, empathy and kindness. For me, the steps that society needs to take to better support neurodivergent folks’ mental health are as follows:

1. More research needs to be done into the experiences of multiply-marginalized neurodivergent people
Up until now, there has been a lack of willingness from academics to expand their research and writings around autism to include multiply-marginalized individuals. It seems as though they are unwilling to admit that they were previously wrong because doing so would mean admitting that they may have caused harm as a result. We need the medical and academic worlds to put this rigidity aside and focus on doing what is best for the neurodivergent community as of now. The more research that is done into the experiences of multiply-marginalized neurodivergent people, including women and people marginalized for their gender, people of colour, trans and queer people, those with co-occurring disabilities, those who are non-speaking or have higher support needs, and those from poor or working-class backgrounds, the better chance those people have of getting a timely diagnosis. This leads to my next point …

2. More access to a timely diagnosis
The earlier that somebody gets diagnosed with autism, ADHD, or other neurodivergences, the earlier that they are able to understand that their differences are not personal deficits. When somebody goes undiagnosed or misdiagnosed for a long period of time, they are unsupported, gaslit and misunderstood, which as we’ve seen in this chapter can have a dramatic impact on their mental health. Whereas when somebody is diagnosed as a young child, their parents, carers, medical professionals and teachers are able to learn to support and accommodate them throughout their lives. A diagnosis (whether medical or self-diagnosed, as we explored in Chapter 7: Self-diagnosis vs Medical Diagnosis) has a huge impact on somebody’s sense of self, identity, self-worth, self-confidence, ability to set boundaries – and, ultimately, their health and happiness. While autistic people, generally, are much more vulnerable to anxiety and depression than the rest of society, the more positive their own autistic identity is, the better their self-esteem has been found to be. As of now, we have two main issues surrounding this: firstly, many people remain undiagnosed and misdiagnosed for reasons we explored in Chapter 5: The Lost Generation, and secondly, once people become aware of their neurodivergence, it is still incredibly difficult to access a medical diagnosis. The waiting list for an ADHD assessment in the UK can be up to seven years in some areas, and private diagnostic assessments can cost upwards of £1,000, rendering them inaccessible and unaffordable to the vast majority of the population. Medical diagnosis is currently a privilege, when, in order to support the mental health of the neurodivergent community, it must be a right.

3. More support for those who are diagnosed – at whatever stage in life that may be
Mental health support in the UK is incredibly lacking, which makes it even more difficult for neurodivergent folks to access it. Thirteen years of austerity under the Conservative government16 has left mental health services, and the NHS as a whole, incredibly underfunded and understaffed. Polls in spring 2023 showed that more than two in three people in the UK think that the NHS is underfunded,17 and want austerity-hit health services to receive more cash. A report from the Mental Health Network (part of the NHS Confederation) showed that mental health services are being left to fail18 – with patients struggling to access both emergency and routine care. I was really lucky to be able to access autism-specific counselling from a charity called Respect for All19 in the Greater Manchester region after my diagnosis, but in many areas of the UK there is no post-diagnostic support available to those who receive a diagnosis later in life. It’s usually a case of hearing the words, ‘Yes, you do, in fact, have XXX’ – and then leaving with little more than a cheery wave goodbye, a bucketful of questions and a mountain of unresolved trauma. This needs to change. Getting diagnosed is a life-changing experience, one which people need and deserve the support of therapy in order to process.

4. More understanding and acceptance of difference
The mental health of neurodivergent people can be impacted by the fact that they are ostracized socially, and that traditional capitalist society is not designed to suit their needs or ways of working. If people could socially be more accepting of the fact that people are different, and if the education and work systems could allow for more flexibility, people could authentically be themselves without the need for anxiety. We need to practise empathy, compassion and acceptance – in both our personal and professional lives. We need to realize that being different is not anything to be scared of, it’s just a natural part of being human. We need to remember that, although it is suggested that one in seven of us are neurodivergent, we are all diverse – and that there is power in that. We need to challenge the systems in which we live and work – and strive for better ones than simply continuing to do things the way they have always been done. We can all do this by asking ourselves and those around us what our real needs are – reminding each other that all our needs are different, and that is okay. Because only then will we create spaces, both at work and across society, where everyone, including neurodivergent people, feels safe, welcome, and appreciated for exactly who they are.

What you can do to support yourself

If your mental health is seriously suffering, it is vital that you speak to a professional, wherever possible, or a trusted friend or family member. Please do not suffer alone! That being said, there are a few simple things that I have found have had a huge positive impact on my mental health and well-being:

1. Stop holding yourself to neurotypical standards
Beating yourself up because you’ve ‘not been productive enough’? Stop that right now, and remember that productivity is morally neutral and having an off day doesn’t make you a bad person! Feeling drained because you’ve forced yourself to go out and socialize because you felt like you ‘should’, even though you knew that your battery for that day was already close to empty? Remember that, next time, it’s okay to say no! I know it’s much easier said than done, but even just getting into the habit of pulling yourself up on it when you slip into the trap of ruminating on ‘shoulds’ can help you feel much brighter. I saw my lovely friend Ellie Perkins (she/her),20 ADHD founder of Write & Sunny copywriting, share that she’d written ‘Stop holding yourself to neurotypical standards’ on a Post-It note and stuck it to the corner of her laptop – maybe you could do the same!

2. Honour your sensory needs
I shared an Instagram Reel recently that summed this up: the thing about making the effort to honour your sensory needs … is that it actually works. It’s like how my mum’s answer to everything, whether I’m ill, upset or overwhelmed, is always to ‘get a good night’s sleep, and you’ll feel much better in the morning’. The response feels annoying at the time, ‘I’m not just tired, Mum! It’s serious because *insert problem/issue/overwhelm here*!’, but, annoyingly, it actually always helps; whether it solves the issue or not, you’ve had time to emotionally regulate, you’re better rested, and you’re slightly more removed from the situation and so can have a wider perspective. Honouring your sensory needs works in the same way. Taking the time to listen to my favourite music on repeat, spend some time under my weighted blanket or cuddling my weighted teddy, watch my starlight projector, wear my noise-cancelling headphones or earplugs when in noisy environments, have a massage on a regular basis, or wear sunglasses in supermarkets or shopping centres with fluorescent lighting always, always helps. Pop a reminder in your diary to spend at least thirty minutes every day doing something that recharges your sensory battery.

3. Unmask when you feel comfortable and safe to do so
As we discussed in Chapter 6: What Is Masking?, masking comes with severe emotional consequences, including exhaustion. Studies have shown that the higher an autistic person scores on the CAT-Q, the Camouflaging Autistic Traits Questionnaire,21 which can be used to self-assess how much you mask, created in 2019, the worse they score for traits of anxiety and depression. Further studies have also shown that camouflaging, or masking, is a significant predictor of suicidal behaviours22 in autistic people. When you feel safe and comfortable to do so, taking off the mask can greatly reduce your risk of mental health difficulties, and, hopefully, help you to feel a lot better. I recently read a passage, written by Dr Hannah Louise Belcher in her book Taking Off the Mask,23 which explained this perfectly; I’m not ashamed to say that it made me cry happy tears, as it gave me hope that things would only continue to get better. Dr Belcher shared that over time, as she had gone through therapy and reconnected with her autistic self, the mental health crises that she had experienced throughout her life had become less and less frequent. She, like me, had previously experienced a phase of burnout and bad mental health every six months like clockwork – but now only reaches this point every couple of years at most. She explained that, while masking, she had been living life like a bucket filled to the brim with stress, but through unmasking, had managed to empty out some space. Upon reading, I realized that I had very much been doing the same – and look forward to emptying my bucket more and more over time.

4. Find a community with other neurodivergent people
We, as humans, need community. It goes right back to our caveman days of needing to be part of a tribe to survive. We need to belong, and we need to connect – and, often, for those of us who are late-diagnosed, this is something that we’ve spent a lot of time missing out on. In the words of Brené Brown, ‘True belonging doesn’t require that we change who we are; it requires that we be who we are.’ When we’ve spent our whole lives masking or not being sure of who we really are, we haven’t had the chance to truly connect. The National Autistic Society states that research suggests that autistic people are more likely to experience feelings of loneliness24 compared to non-autistic people, and we know that loneliness, living alone, and poor social connections are as bad for your health25 as smoking fifteen cigarettes a day. Finding connection and community with other people who can understand, empathize and relate to your experiences is a sure way to start to feel brighter. We’d love to see you in the (un)masked community if you need somewhere to start.

—
Recap

In this chapter, we have explored:

My story with the mental health system.

ADHD and mental health.

Autism and mental health.

What we need from society.

What you can do to support yourself.

Your takeaway box

Remember that you’re not alone

If you’re struggling with your mental health – whether that’s pre-diagnosis or post-diagnosis – you are not alone. As amazing as it feels to finally get some answers, understanding, and validation, it comes with a whole load of grief for what could have been and trauma over what actually was. You are not ‘broken’ for feeling the way you do, and you are not ‘ungrateful’ for not feeling overcome with joy when receiving your diagnosis. As much as it is a terribly cringy and overused saying, it’s true: life is tough, but so are you.

Time to talk

If you’re struggling, please please please reach out to somebody and talk about it. Ideally, a therapist with experience and understanding of neurodivergence – but I know that this isn’t always possible or accessible. Failing that, a friend, family member or loved one. A problem shared isn’t always a problem halved – the feelings don’t magically change overnight, but it’s really important that you don’t keep everything bottled up to yourself.

Check in for a chat

As a friend, family member or ally to the neurodivergent community, remember to check in on the people around you. Sense, a leading disability charity, found that up to 50% of disabled people will be lonely on any given day; you can be the difference in greatly reducing that statistic.

11

Conclusion

If you’ve made it this far as a neurodivergent person, I really hope that you’re feeling validated, understood, and more aware than ever of just how brilliant you are. If you’ve made it this far as a friend, family member or ally, I hope you’ve discovered a new-found understanding of the experiences of the people around you, and feel empowered to go away and advocate for a more inclusive society.

As someone who’s not very good at processing big emotions, I’m feeling a little overwhelmed at coming to the end of this book. I can’t quite believe that in the space of two years, I’ve gone from not even knowing that I was neurodivergent, to discovering a whole new world, life, and career, and to writing a whole book on the matter. From the girl who felt lost, misunderstood, and that the world was just not built for her, to the woman who fought for change and forced the world to listen. From the high school dropout who believed she would never really get anywhere in life, to the person creating a career by speaking about the things that she is most passionate about. From the person who thought that she would never find anywhere to belong, to the founder of a community of other ‘outsiders’ from all around the world. I hope you can see that this transformation is possible for you, too, and that things – while always tricky – are certain to get better.

After going through the process of digging up some of the experiences I’ve shared with you throughout this book and some of the tricky times I faced pre-diagnosis, now more than ever I really want to give younger Ellie a big old hug – and I’m sure you’re feeling the same about your younger self after reading this, too. Grateful as I am for discovering my answers and getting my lightbulb moments, and hopeful as I am that we’re moving towards a much more inclusive society, it has to be said that, as of now, the world still isn’t a very nice place for neurodivergent people. We’re misunderstood, we’re gaslit, and we’re ostracized. We’re othered, we’re pathologized, and we’re infantilized.

But we are so much more than that, too.

We’re powerful, we’re honest, and we’re creative. We find strength and comfort in community, we’re there for one another, and we’re resilient. We’re brave enough to carve out our own path, we speak up and force the world to listen, and we’re learning to forgive ourselves for the times that things went wrong. We’re brave enough to question the way that things have always been done, we’re curious enough to explore new ways of being, and we’re gentle with ourselves while we learn to unmask.

I really hope, more than anything, that this book has shown you that you were never broken. You are brilliant and wonderful and unique, and you don’t need to be fixed. There are countless struggles that come with being a neurodivergent person in a neurotypical world – but there are countless joys, too.

You are an honest, upfront and extremely loving human being who experiences life at 100%, and I hope, after reading this book, you can see just how special that is.

I’d like to leave you with ten key takeaways from throughout the book, as I know it can be tricky to take everything in all at once. As I said in the introduction, feel free to come back to this book whenever you’d like, and to read it in whichever way works best for you – whether that’s in a different order, one chapter at a time, or as and when you feel ready to work through each bit.

Your top 10 takeaways

1. Language is key
The way in which we use language to describe autism, ADHD, neurodiversity and neurodivergence is super important. Remember that neurodiversity involves all people and refers to the differences in the way in which we all think, process, feel and behave, and that an individual person can be either neurotypical or neurodivergent. We also tend to use identity-first language when referring to disabled people; for example, I would refer to myself as an autistic ADHDer rather than a ‘person with autism and ADHD’. Be mindful of the language you use, and try your best to be as accurate as possible, as often as possible.

2. Remember the umbrella
Remember that autism and ADHD are just two of the neurodivergences that fall under the neurodivergent umbrella and that, while they are the main focus of this book, it’s important to highlight that there are so many people outside of autistic people and ADHDers who are neurodivergent, too. Seek out those voices, and pay those people just as much attention as you’re paying to this book. To be a truly educated and inclusive society, we need to consider and accept all types of neurodivergence.

3. You are different, not less
By making a list of the traits of either autism, ADHD, or both, that resonate for you and the ways in which they show up, you might feel as though you can start to forgive yourself for some of the things that you struggle with, some of the ways that you behave, and some of the things that people have judged you for. Remember: you are not a bad person; you are just neurodivergent – meaning you might think, behave, communicate, or do things slightly differently. This is one of the most important realizations that came with discovering I was neurodivergent, and when I found out that things I had always thought made me ‘bad’ were actually just part of an undiagnosed disability, I want to give younger Ellie a big old cuddle. Be gentle with yourself, too.

4. Be yourself
One of the most powerful things you can do to help increase representation, awareness and understanding of neurodivergence is actually very simple – just BE YOU! If, whenever you feel safe and able to do so, you proudly and authentically show up as a neurodivergent person (whether that’s online, in your workplace, in your friendship group or wherever you feel comfortable), you are helping to replace society’s narrow-minded view of what a neurodivergent person looks like or acts like with a more accurate representation. Showing up as your true, authentic, deeply caring self, and showing that neurodivergent people come in all shapes and sizes, is a significant act for which you should always feel proud! (But a friendly reminder that if it isn’t safe for you to unmask or you don’t feel comfortable doing so just yet, that is absolutely fine too.)

5. Be gentle with yourself
Remember to be kind and patient with yourself when unmasking. It’s not going to happen overnight, there isn’t one way to unmask, and you should only unmask when you feel safe and comfortable to do so. While unmasking, you might even start to feel like you’re ‘going backwards’ or losing skills. For me, this shows up in things like finding travelling so much more difficult than I used to because I’m now aware of sensory overload; or struggling to cook for myself (something that society deems to be straightforward but is actually made up of so many different instructions and processes!) now that I’m not in robot mode forcing myself through all the various steps, which my autistic/ADHD brain finds difficult because of its struggles with executive functioning, autistic inertia and slower processing. This regression in skills that you now know to cause overwhelm isn’t anything to be ashamed of or feel bad about – it’s just part of readjusting to life as an autistic person after spending a lifetime ignoring your needs.

6. Remember that you are valid
Whether you are medically diagnosed, self-diagnosed, or currently deciding which route to take, please remember that you and your experiences are valid with or without a stamp of approval from a medical professional. It is likely that you are going to face some backlash or stigma, whether that’s down to the way that the media is demonizing self-diagnosis at the moment, or with people assuming you are ‘jumping on the bandwagon’, but please remember that you don’t owe anybody an explanation and that you are the expert in your own experiences. If you need a team of cheerleaders and validators in your corner, the (un)masked community are here to welcome you with open arms!

7. Question your bias
Whether you are neurodivergent, neurotypical, disabled or non-disabled, it is really important that every single one of us takes the time to question our biases. Society has subconsciously taught us lots of things that are not only incorrect and problematic, but also extremely harmful for disabled people. Remember that disabled is not a negative word; it is just a neutral fact in some people’s lives, and that just because you can’t see somebody’s disability, that doesn’t mean that it doesn’t exist and need accommodating. Take the time to educate yourself and challenge your ideas by listening to a whole range of neurodivergent and disabled people – including people of colour, queer people, and people with a wide range of support needs.

8. Reframe your thoughts around accommodations
Don’t let your brain trick you into thinking that, because you have made it this far without any support, you either don’t deserve or don’t need to be supported going forward – whether that’s when deciding whether to access a diagnosis, in the workplace, or when weighing up things like medication, coaching and therapy. Instead of thinking, ‘I’ve made it this far without accommodations and support, so maybe I don’t need them,’ replace the thought with, ‘I am finally getting access to the support that I have deserved the whole time.’ Being supported or accommodated doesn’t make you any less capable or mean that you’re getting a leg up – it just means that the playing field is finally being levelled to make society just as accessible to you as it is to everybody else.

9. Remember that you’re not alone
If you’re struggling with your mental health (whether that’s pre-diagnosis, post-diagnosis, or on the journey in between), remember that you are not alone. Amazing as it feels to finally get some answers, understanding and validation, it comes with a whole load of grief for what could have been and trauma over what actually was. You are not ‘broken’ for feeling the way you do, and you are not ‘ungrateful’ for not feeling overcome with joy when you realize that you are neurodivergent. As much as it is a terribly cringy and overused saying, it’s true: life is tough, but so are you.

10. Continue your journey in the (un)masked community
Connecting with other neurodivergent people (whether they’re in the same situation you are, or a little bit further along the journey, and whether that’s online, or in person) gives you a safe space to be yourself, knowing that you won’t be judged or misunderstood while doing so. One way that you can do this is by joining the (un)masked community, which I founded in 2022. Building relationships with other neurodivergent people has been one of the most rewarding parts of my unmasking journey; it showed me that I was capable of building real friendships, that it was possible to be accepted as the person I really am, and it brought me levels of joy that I never thought possible. Since creating the (un)masked community, we’ve built up a whole bank of resources like blogs and videos, a private community of hundreds of neurodivergent people all over the world, and hosted in-person events across multiple cities in the UK. We would love to see you in the community or at one of our events, and we’ve even created a channel specifically for people to discuss the book! You can find more information at www.weareunmasked.com.

Acknowledgements

Out of the whole book, this bit is probably the scariest to write as an ADHDer – because there’s a 99% chance I’ll miss somebody really important. If that’s you: I’m sorry, and I love you. Here goes!

Thank you to Rachel and the RML team, and Amy and the Penguin Life team. Over the relatively short span of my career in this space, I’ve realized that people either ‘get it’, or they don’t. Within five minutes of meeting both of you, I knew that you got it – without ever once questioning. I will be forever grateful for your belief, trust and support – and for making this whole process so much more enjoyable and less scary!

Thank you Mum, for everything. For being my biggest cheerleader and advocate, my carer, nurse, problem-solver, admin-do-er and best friend. Thank you Dad, for always working tirelessly to make sure we’ve had the best and most comfortable life possible and never wanted for anything – and for always knowing that sunshine is the best cure! Thank you Lewis, for being the best little brother that anyone could ask for. My rock, my gig partner and my number one. I love you all so much, and I am so, so grateful for you every day. (And you, Oscar – woof.)

Thank you to Grandma Chris for reminding Mum that ‘Ellie isn’t difficult, you just have to give her what she wants’, and to Grandad Jeff for nurturing my autistic brain with after-school Countdown on the TV and for my love of music. Also to Grandma Elise for turning my beloved blankie into a cushion so that I could have the sensory treats I needed on my Year 6 residential. Thank you to the whole Pickering and Middleton families for your endless love always and for being so understanding and accepting when faced with my diagnoses, unmasking, and a whirlwind couple of years! I know so many aren’t so lucky, and I’m incredibly thankful to be surrounded by so much love. Grandad Derek, I hope you’re proud up there – just resting your eyes.

Thank you to Alyx and Scholes for being the ones that stuck around, to Charli and Leanne for showing me what a friendship group is really supposed to feel like, and to all of my online neurodivergent friends that became real-life neurodivergent friends and made me realize that real friendship was something that I could experience, after all – Paff, Ella, Milly, Amy, and so many more, I love you endlessly.

Thank you to The Greats for giving me the first place that I really, truly belonged, and to ABJ for being my soulmate-in-brain-form.

Thank you to the (un)masked community for always trusting us as a safe place to be your true selves, and to everybody out there that is working tirelessly to ensure that the next generation of neurodivergent folks grow up knowing that they’re not broken, they’re just different.

And finally, thank YOU for reading this. As someone who struggles with big emotions, I really can’t put into words just how grateful I am to not only have found my answers, but to get to share my story with the world in the hope that all of the five-year-old, ten-year-old and fifteen-year-old Ellies out there get the validation and understanding that they deserve – and that the twenty-five-year-old, thirty-five-year-old and forty-five-year-old Ellies know that they’re not alone.

References and resources

Chapter 2: The Basics

1 ‘first coined by Judy Singer in her 1998 thesis’ https://www.autismawareness.com.au/aupdate/in-conversation-with-judy-singer

2 ‘first coined by Kassiane Asasumasu in 2000’ https://stimpunks.org/glossary/neurodivergent/

3 Sonny Jane Wise (they/them) https://www.instagram.com/livedexperienceeducator/

4 ‘neurodivergent people having a ‘spiky profile’ https://exceptionalindividuals.com/candidates/neurodiversity-resources/spiky-profile/

5 ‘lifelong developmental disability which affects how people communicate and interact with the world’ https://www.autism.org.uk/advice-and-guidance/what-is-autism

6 ‘under the DSM-5’ https://www.psychiatry.org/psychiatrists/practice/DSM

7 ‘labelled as having Asperger’s rather than autism, were characterized by’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4725185/

8 ‘a more clearly defined way to distinguish between those within the autistic spectrum’ https://www.autism.org.uk/advice-and-guidance/what-is-autism

9 ‘85% of autistic children also have some form of co-occurring psychiatric diagnosis’ https://autismspectrumnews.org/the-prevalence-of-comorbidities-in-autism-consideration-of-comorbidity-in-intervention-and-treatment-response/

10 ‘a mental health condition that is defined through analysis of behaviour’ https://ADHDUK.co.uk/about-ADHD/

11 ‘structural differences in the brain between ADHDers and non-ADHDers’ https://www.healthline.com/health/ADHD/the-brains-structure-and-function

12 ‘an estimated 77–88% genetic contribution’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7046577/

13 ‘approximately a 30% delay in the development of their executive functions’ https://ot4ADHD.com/2022/08/01/executive-functions-for-classroom-performance/

14 ‘approximately 75–80% of the executive functioning capability of their peers’ https://www.ADHDaustralia.org.au/about-ADHD/the-role-of-executive-functioning-in-ADHD/

15 ‘at least one defective gene, the DRD2 gene’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2626918/

16 ‘most common form of ADHD is now known to be the combined type’ https://www.russellbarkley.org/factsheets/ADHD_EF_and_SR.pdf

17 ‘the conditions for diagnosis are that’ https://www.cdc.gov/ncbddd/ADHD/diagnosis.html

Chapter 3: Translating Autistic Traits

1 ‘taking things literally’ https://www.nhs.uk/conditions/autism/signs/adults/

2 ‘Facial expressions might not come as naturally’ https://neurosciencenews.com/aans-asd-facial-expression-19065/

3 ‘inability to differentiate between, identify or describe your feelings’ https://www.medicalnewstoday.com/articles/326451

4 ‘Emotion Sensation Feeling Wheel’ https://lindsaybraman.com/emotion-sensation-feeling-wheel/

5 ‘bottom-up thinking’ Unmasking Autism: The Power of Embracing Our Hidden Neurodiversity, Dr Devon Price, Monoray, 2022

6 Milly Evans (they/she) https://www.tiktok.com/@itsmillyevans

7 ‘some of the most successful people in the country to help them with their own content’ https://greatinfluence.co.uk/

8 Dr Carly Jones MBE (she/her) https://www.linkedin.com/in/dr-carly-jones-mbe-frsa-hondsc-7a588b164/

9 ‘Struggling with temperature regulation’ https://brightfuturescare.co.uk/heat-intolerance-and-autism-spectrum-disorder/

10 ‘strong sense of justice’ https://www.bps.org.uk/psychologist/autism-myth-and-reality

11 ‘Stimming’ https://www.autism.org.uk/advice-and-guidance/topics/behaviour/stimming

12 ‘Rejection Sensitive Dysphoria’ https://www.verywellmind.com/what-to-know-about-autism-and-rejection-sensitive-dysphoria-7097539

13 ‘executive functioning’ https://www.leicspart.nhs.uk/autism-space/health-and-lifestyle/autism-and-executive-functioning-skills/

14 ‘struggling with interoception’ https://www.autism.org.uk/advice-and-guidance/professional-practice/interoception-wellbeing

15 ‘gastrointestinal issues’ https://www.spectrumnews.org/news/analysis-finds-high-rates-of-gut-problems-in-autism/

Chapter 4: Translating ADHD Traits

1 ‘a condition that affects people’s behaviour’ https://www.nhs.uk/conditions/attention-deficit-hyperactivity-disorder-ADHD/

2 ‘disorder of self-regulation’ https://www.russellbarkley.org/factsheets/ADHD_EF_and_SR.pdf

3 ‘Having a short attention span and being easily distracted’ https://www.nhs.uk/conditions/attention-deficit-hyperactivity-disorder-ADHD/symptoms/

4 ‘high novelty-seeking and low self-directedness’ https://pubmed.ncbi.nlm.nih.gov/27301261/

5 ‘completely absorbed in what they are doing’ https://positivepsychology.com/mihaly-csikszentmihalyi-father-of-flow/

6 ‘being able to channel all that random energy’ https://link.springer.com/article/10.1007/s12402-018-0277-6

7 ‘slower and more variable reaction times’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3441931/

8 ‘difficulties in being able to assess time’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6556068/

9 ‘chronic procrastinators’ https://www.psychologytoday.com/gb/blog/dont-delay/201809/ADHD-and-procrastination

10 ‘object permanence’ https://www.theminiADHDcoach.com/living-with-ADHD/object-permanence-ADHD

11 ‘driven by a motor’ https://www.additudemag.com/3-types-of-ADHD/

12 ‘Hester, who was interviewed as part of a BBC Insights article’ https://www.bbc.co.uk/news/health-59038116

13 ‘Village Idiot show at Stratford East Theatre’ https://www.stratfordeast.com/whats-on/all-shows/village-idiot/1584

14 ‘(un)masked events’ https://www.weareunmasked.com/

15 ‘thalamus gate’ https://www.additudemag.com/ADHD-brain-impulsivity-explained/

16 ‘nine times more likely to end up in prison’ https://www.ADHDfoundation.org.uk/wp-content/uploads/2017/11/A-Lifetime-Lost-or-a-Lifetime-Saved-report.pdf

17 ‘far more likely than those without to engage in risky financial behaviour’ https://www.abc.net.au/news/2019-05-31/how-ADHD-affects-your-wallet-mental-health-kids/11158952

18 ‘60% of ADHDers said that it directly impacts their financial lives’ https://monzo.com/blog/the-extra-costs-of-living-with-ADHD

19 ‘four times more likely to have an eating disorder’ https://www.additudemag.com/ADHD-linked-to-eating-disorders/

20 ‘11% of adults with ADHD receive treatment’ https://www.singlecare.com/blog/news/ADHD-statistics/

21 ‘70% of adults reported problems with anger or emotion’ https://joelniggphd.com/ADHD-anger-and-emotional-regulation/

22 ‘The brain’s amygdala region’ https://www.additudemag.com/emotional-dysregulation-ADHD-video/

23 ‘Rejection Sensitive Dysphoria (RSD), a term first coined by Dr William Dodson’ https://www.psycom.net/ADHD/rejection-sensitive-dysphoria

24 ‘for every fifteen negative comments that a child with ADHD receives, there is only one positive comment’ https://chadd.org/ADHD-weekly/how-does-an-ADHD-diagnosis-affect-self-esteem/

25 ‘by age twelve, children with ADHD receive 20,000 more negative messages’ https://chadd.org/ADHD-weekly/use-summer-to-improve-your-parent-child-relationship/

26 ‘quickly scan every person they meet’ https://chadd.org/wp-content/uploads/2016/10/ATTN_10_16_EmotionalRegulation.pdf

Chapter 5: The Lost Generation

1 ‘Boys are five times more likely to be diagnosed with ADHD than girls’ https://news.sky.com/story/women-and-girls-face-ADHD-misdiagnosis-due-to-misconceptions-around-symptoms-12511672

2 ‘only forty children in the UK were receiving medical treatment’ https://www.lanc.org.uk/about-us-ADHD-asd-assessment/our-history/

3 ‘2.6 million people in the UK who have ADHD’ https://ADHDUK.co.uk/about-ADHD/

4 ‘one in twenty autistic women are diagnosed in childhood’ https://inews.co.uk/news/long-reads/autism-missed-women-girls-1718888

5 ‘AQ-10’ https://docs.autismresearchcentre.com/papers/2012_Allisonetal_JAACAP_RedFlags.pdf

6 ‘AQ (Autism Quotient)’ https://novopsych.com.au/assessments/diagnosis/autism-spectrum-quotient/

7 ‘Right To Choose application’ https://psychiatry-uk.com/right-to-choose-asd/

8 ‘introducing the “extreme male brain” theory’ https://www.spectrumnews.org/news/extreme-male-brain-explained/

9 Emily Katy (she/her) https://www.thebksagency.com/emilykaty

10 ‘80% of autistic girls being undiagnosed at the age of eighteen’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8870038/

11 ‘rates of left-handedness have increased massively over the past 100 years’ https://twitter.com/TransActualUK/status/984336585981341696?lang=en

12 ‘Elliott Garcia voicing an autistic train in Thomas the Tank Engine’ https://www.bbc.co.uk/news/UK-england-berkshire-62811271

13 ‘Chloé Hayden playing Quinni’ https://collider.com/heartbreak-high-quinni-autistic-characters-tv-chloe-hayden/

14 ‘Black and Hispanic children continue to be less likely to be identified with autism than White children’ https://www.cdc.gov/ncbddd/autism/addm-community-report/differences-in-children.html

15 ‘people from Black, Asian and minority ethnic (BAME) communities face additional barriers to accessing diagnosis and support’ https://www.autism.org.uk/advice-and-guidance/what-is-autism/autism-and-bame-people

16 ‘people who are both trans and autistic may be even more likely than cisgender women to go undiagnosed’ https://neurodivergentinsights.com/autism-infographics/trans-autism

17 Eliza Rain (they/them) https://www.instagram.com/disabled_eliza/

18 Mohammed ‘Abz’ Abby (he/him) https://www.instagram.com/itsabzzy

19 Abigail Agyei MBE (she/her) https://www.linkedin.com/in/abigail-agyei-mbe/

20 Ella Willis (they/them) https://www.instagram.com/_ellawillis/

21 Max Siegel (they/he) https://www.linkedin.com/in/maximiliansiegel/

Chapter 6: What Is Masking?

1 ‘masking is like doing 24/7 customer service’ https://twitter.com/fochti

2 ‘autistic children often quietly observe what others are doing’ https://www.amazon.co.uk/Complete-Guide-Aspergers-Syndrome/dp/1843106698

3 ‘89% of autistic women and 91% of autistic men in their sample study attempted to camouflage (or mask)’ https://link.springer.com/article/10.1186/s13229-018-0226-4

4 ‘some of the experiences of autistic people who mask’ https://link.springer.com/article/10.1007/s10803-017-3166-5

5 ‘people associated autism with introversion, social withdrawal, and having a “difficult” personality’ https://eprints.whiterose.ac.uk/106247/

6 ‘For fear of becoming a Sherlock’ Unmasking Autism: The Power of Embracing Our Hidden Neurodiversity, Dr Devon Price, Monoray, 2022

7 ‘valuable energy resources’ https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(19)30224-X/fulltext

8 ‘many participants reported severe emotional consequences, including exhaustion’ https://pubmed.ncbi.nlm.nih.gov/28527095/

9 ‘leaves behind a kind of psychic plaque’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7313636/

10 ‘correlations between increased masking and suicidality’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7502035/

11 Charli Clement (they/she) https://www.instagram.com/charliclement_/

12 Milly Evans (they/she) https://www.tiktok.com/@itsmillyevans

13 Paff Evara (they/them) https://www.linkedin.com/in/paffevara/

14 ‘the more positive their own autistic identity is, the better studies have found their self-esteem to be’ https://onlinelibrary.wiley.com/doi/abs/10.1002/ejsp.2297

15 ‘engaging with special interests is positively associated with subjective well-being’ https://onlinelibrary.wiley.com/doi/abs/10.1002/aur.1931

16 Jenny Hamer (they/she) https://www.linkedin.com/in/jennyhamer-bringingjoy/

17 ‘the (un)masked community’ https://www.weareunmasked.com/community

Chapter 7: Self-diagnosis vs Medical Diagnosis

1 Neurodivergent Lou (she/her) https://www.instagram.com/neurodivergent_lou/

2 ‘Autism Symptom Dimension Questionnaire (ASDQ)’ https://onlinelibrary.wiley.com/doi/10.1111/dmcn.15497

3 ‘major advance’ https://www.dailymail.co.uk/health/article-11619629/Scientists-develop-simple-questionnaire-diagnose-autism-95-accuracy.html

4 ‘ratio of men to women diagnosed as autistic is generally quoted as 4:1’ https://molecularautism.biomedcentral.com/articles/10.1186/s13229-017-0184-2

5 ‘recent research shows rates may actually be 3:4’ https://pubmed.ncbi.nlm.nih.gov/35204992/

6 ‘up to seven years in some areas’ https://www.bbc.co.uk/news/UK-england-44956540

7 ‘at least 21,000 adults were on waiting lists for ADHD services’ https://www.bbc.co.uk/news/UK-england-53526174

8 ‘a BBC Panorama documentary’ https://www.bbc.co.UK/programmes/m001m0f9

9 ‘the decade-old Reddit page r/ADHD grew’ https://www.theguardian.com/society/2022/jun/02/tiktok-trends-or-the-pandemic-whats-behind-the-rise-in-ADHD-diagnoses

10 Georgia Holliday (she/her) https://www.instagram.com/georgiaholliday_/

11 ‘noticed that a stimulant called Benzedrine’ https://www.webmd.com/add-ADHD/ADHD-history

12 ‘Ritalin is thought to boost the levels of chemicals called dopamine and noradrenaline’ https://www.nhs.uk/medicines/methylphenidate-children/

13 ‘Personal Independence Payment’ https://www.gov.uk/pip

14 ‘was barred from moving to New Zealand with her parents’ https://www.theguardian.com/world/2022/apr/26/new-zealand-denies-entry-to-autistic-daughter-of-immigrant-couple

15 ‘considered autistic people to be a “burden” on the state’s healthcare system’ https://devonprice.medium.com/seeking-an-autism-diagnosis-heres-why-you-might-want-to-rethink-that-530e79c272a0

16 ‘ADHDers are six times more likely to be gender non-conforming’ https://www.sciencedaily.com/releases/2014/03/140312103102.htm

17 ‘three to six times as likely to be autistic’ https://www.spectrumnews.org/news/largest-study-to-date-confirms-overlap-between-autism-and-gender-diversity/

18 Arlo West (they/them) https://www.linkedin.com/in/arlo-west-%F0%9F%8F%B3%EF%B8%8F%E2%80%8D%F0%9F%8C%88%F0%9F%8F%B3%EF%B8%8F%E2%80%8D%E2%9A%A7%EF%B8%8F-68706119b/

19 ‘anyone who thinks a disabled person cannot make good choices’ https://autisticadvocacy.org/actioncenter/issues/choices/guardianship/

Chapter 8: Ableism and Pretty Privilege

1 ‘people who are deemed more attractive or desirable’ https://www.myimperfectlife.com/features/pretty-privilege

2 ‘52% of women believe that gender discrimination negatively impacts their medical care’ https://www.today.com/health/today-survey-finds-gender-discrimination-doctor-s-office-serious-issue-t153641

3 ‘91% of autistic adults had experienced some form of abuse before their autism diagnosis’ Safeguarding Autistic Girls: Strategies for Professionals, Dr Carly Jones MBE, Jessica Kingsley Publishers, 2021

4 ‘Black Lives Matter’ https://www.theguardian.com/world/2023/feb/05/patrisse-cullors-black-lives-matter-keenan-anderson

5 ‘#MeToo’ https://metoomvmt.org/get-to-know-us/tarana-burke-founder/

6 ‘three out of four disabled people (72%) having experienced negative attitudes or behaviour in the last five years’ https://www.scope.org.uk/campaigns/research-policy/attitudes-towards-disabled-people/

7 ‘one in seven of us live with a disability, and of those, 80% are invisible’ https://hiddendisabilitiesstore.com/insights/category/invisible-disabilities

8 Leanne Maskell (she/her) https://www.linkedin.com/in/leannemaskell/

9 Tanisha Cro (she/her) https://www.linkedin.com/in/tanisha-c/

10 Abigail Agyei MBE (she/her) https://www.linkedin.com/in/abigail-agyei-mbe/

11 Robyn Clarke (she/her) https://www.linkedin.com/in/robyn-clarke-%E2%AD%90%EF%B8%8F-412470151/

Chapter 9: In the Workplace

1 ‘22% of autistic people are in any sort of paid employment’ https://www.autism.org.uk/what-we-do/news/new-data-on-the-autism-employment-gap

2 ‘77% of those who are unemployed state that they want to work’ https://www.autism.org.uk/what-we-do/news/government-must-tackle-the-autism-employment-gap

3 ‘are often highly creative, divergent thinkers’ https://www.ADHDfoundation.org.uk/wp-content/uploads/2017/11/A-Lifetime-Lost-or-a-Lifetime-Saved-report.pdf

4 Professor John Amaechi OBE https://www.linkedin.com/in/amaechi/

5 Otter.ai https://otter.ai/

6 Grammarly https://app.grammarly.com/

7 Dragon https://www.nuance.com/en-gb/dragon.html

8 Google Meet https://meet.google.com/

9 Tiimo https://www.tiimoapp.com/

10 ADHD coaching https://www.ADHDworks.info/

11 Access to Work scheme https://www.gov.UK/access-to-work

12 ‘full (un)masked eGuide on how to apply for Access to Work’ https://www.weareunmasked.com/category/e-guides

13 ‘there are 1.5 million adults with ADHD in the UK, but only 120,000 are formally diagnosed’ https://www.bigissue.com/life/health/ADHD-NHS-diagnosis-waiting-times-crisis/

14 ‘a Stanford University study on call-centre employees’ https://www.gsb.stanford.edu/faculty-research/working-papers/does-working-home-work-evidence-chinese-experiment

15 ‘Great Place to Work compared employee productivity from March to August of 2020’ https://www.greatplacetowork.com/resources/blog/remote-work-productivity-study-finds-surprising-reality-2-year-study

16 ‘a 2021 University College London study which explored the effects of the Covid-19 pandemic on the mental health of autistic people’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9582738/

Chapter 10: Late Diagnosis and Mental Health

1 ‘23.5% of women with ADHD have attempted suicide’ https://www.additudemag.com/ADHD-in-women-suicide-risk/

2 ‘more than one in four young people (26%)’ https://www.youngminds.org.UK/about-us/media-centre/press-releases/mental-health-waiting-times-harming-young-people/

3 Unmasking My Autism https://www.bbc.co.uk/programmes/m001k31t

4 Safeguarding Autistic Girls Safeguarding Autistic Girls: Strategies for Professionals, Dr Carly Jones MBE, Jessica Kingsley Publishers, 2021

5 ‘70% of people diagnosed with ADHD may also experience depression in their lifetime’ https://www.verywellmind.com/ADHD-and-depression-4773762

6 ‘people with ADHD have had to put in 500% more effort than average throughout their childhood’ https://www.refinery29.com/en-gb/how-ADHD-affects-adults

7 ‘the direct impact that a diagnosis can have on one’s mental health’ https://ADHDaware.org.uk/what-is-ADHD/ADHD-and-mental-health/

8 ‘twice as likely to have been fired from a job’ https://attentionuk.org/about/why-you-should-care/

9 ‘25% of adults being treated for alcohol and substance abuse’ https://www.webmd.com/add-ADHD/ADHD-and-substance-abuse-is-there-a-link

10 ‘more likely to get divorced’ https://www.verywellmind.com/ADHD-and-its-effect-in-marriage-20380

11 ‘32.2% of students with combined type ADHD drop out of high school’ https://chadd.org/about-ADHD/long-term-outcomes/

12 ‘70% of autistic people experience mental health challenges in their lifetime’ https://www.autism.org.uk/advice-and-guidance/topics/mental-health

13 ‘Depression is also disproportionately common among the autistic community’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6512853/

14 ‘made headlines after she devastatingly died by suicide on campus’ https://www.independent.co.uk/news/UK/home-news/caitlyn-scott-lee-wycombe-autism-b2329697.html

15 ‘66% of autistic adults reported having had suicidal thoughts’ https://www.autism.org.uk/advice-and-guidance/professional-practice/suicide-research

16 ‘Thirteen years of austerity under the Conservative government’ https://hansard.parliament.uk/commons/2023-06-07/debates/1D7B6570-4E2D-4ED1-80A4-7101A07E2A44/MentalHealthTreatmentAndSupport

17 ‘more than two in three people in the UK think that the NHS is underfunded’ https://morningstaronline.co.uk/article/b/more-than-two%E2%80%93thirds-of-public-think-NHS-is-underfunded-including-over-half-of-tory-voters-poll-finds

18 ‘mental health services are being left to fail’ https://www.nhsconfed.org/news/NHS-mental-health-services-are-under-unsustainable-pressure-health-service-leaders-warn

19 Respect for All https://www.respectforall.org.uk/

20 Ellie Perkins (she/her) https://www.linkedin.com/in/ellieperkins98/

21 ‘CAT-Q, the Camouflaging Autistic Traits Questionnaire’ https://embrace-autism.com/cat-q/

22 ‘camouflaging, or masking, is a significant predictor of suicidal behaviours’ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7502035/

23 Taking Off the Mask Taking Off the Mask: Practical Exercises to Help Understand and Minimise the Effects of Autistic Camouflaging, Dr Hannah Louise Belcher, Jessica Kingsley Publishers, 2022

24 ‘autistic people are more likely to experience feelings of loneliness’ https://www.autism.org.uk/advice-and-guidance/topics/loneliness

25 ‘loneliness, living alone, and poor social connections are as bad for your health’ https://www.theguardian.com/lifeandstyle/2010/jul/27/friendship-relationships-good-health-study

Index

The page references in this index correspond to the print edition from which this ebook was created, and clicking on them will take you to the location in the ebook where the equivalent print page would begin. To find a specific word or phrase from the index, please use the search feature of your ebook reader.

Abby, Mohammed ‘Abz’ 149

ableism

defined 169–70, 217

internalized 28, 144, 148, 217, 222, 226

misogyny, interaction with 214, 228–31

pretty privilege and 214, 215, 217, 222, 225, 226, 228–31

workplace and 262

abnormal experiences, prolonged episodes of 277

acceptance

difference/neurodivergence and 54, 69, 91–2, 144–5, 154, 262, 292–3, 304, 309

self-acceptance 12, 14, 15, 17, 174, 189, 245

Access to Work scheme 251–2

accommodations 93, 173, 231

accessing 236, 251–6, 264

cost of/free 252–5

examples 236, 247–51, 256, 264

menu of 256

reframing thoughts around 264–5, 307–8

workplace 236, 239, 247–56, 262, 264–6, 307–8

acting without thinking 116–18

ADHD (Attention Deficit Hyperactivity Disorder)

alcohol/substance abuse and 284

assigned female at birth (AFAB)/assigned male at birth (AMAB) and 48

autistic ADHDer/AuDHDer 10–11, 29, 53, 160, 242, 257, 303

coaching 52, 251

co-occurring 29–30

combined type 47–8, 51, 284

definition 21, 43–4

depression and 200, 202, 274, 280–83

diagnosis 8–9, 22, 44–51, 53–4, 59, 93, 97, 112–13, 117, 118, 119–20, 122, 125–54, 185–211, 267–99 see also diagnosis type

diagnostic criteria 22, 45–8, 52, 93, 97, 120, 129, 131–5, 190

disability 28

disorder of self–regulation 98

ditzy blonde stereotype and 220–22

divorce and 284

dopamine and 46, 100, 110, 200

dropping out of school and 284

eating disorders and 117

executive functioning skills and 45–6, 97–9

financial behaviour and 117, 284

genetic contribution 44–5, 46, 120

hyperactive and impulsive traits 111–21

hyperactive type 47, 48, 50–51, 52

hyperfixation and 107, 278

hyperfocus and 44, 47, 101, 253

identity-first language and 28

inattentive traits (difficulty concentrating and focusing) 99–111

inattentive type 47, 48, 49, 51, 220

language and 28–9, 53

masking 10, 155–84 see also masking

media and 126, 140–45

medication 200–202

mental illnesses/mental health conditions and 28, 44, 268, 281–4

neurodivergent umbrella and 22, 25, 26, 53

neurodiversity model and 21

prefrontal cortex and 97–8

pretty privilege and see pretty privilege

prison and 117, 283

rejection sensitive dysphoria (RSD) and 88–9, 120

support for people with 22, 52, 149, 198, 199, 200–203, 227, 230, 290

traits 93–123

waiting lists for assessment, UK 194, 291

workplace and see workplace

ADHD Aware 282

ADHD Foundation 134

ADHD UK 44, 130

agendas, written 254, 261

agoraphobia 272

Agyei, Abigail 150, 230

alcohol 174, 284

alexithymia 72, 176, 280

Alfonzo, Arianna 204

allistic 26, 29, 71, 79, 81

alone, remembering you’re not 298, 308, 313

Amaechi, Professor John 244

antidepressants 3, 43

anxiety 6, 41, 52, 73, 119, 150, 171, 172, 173–4, 190, 196, 199, 219, 229, 240, 244, 256, 258, 261, 262, 273–4, 278, 280–81, 285, 291, 293, 296

anti-anxiety medications 202

anxiety related depression 272

generalized anxiety disorder 3, 112, 272

routine and 74–7

social situations and 66–7

AQ-10 130–31

ASAN (Autism Self Advocacy Network) 207

Asasumasu, Kassiane 25

ask or assume, don’t 211

Asperger, Hans 37

Asperger Syndrome 37–8, 135

assigned female at birth (AFAB) 48, 151, 192, 223

assigned male at birth (AMAB) 48

Attwood, Dr Tony 161–2

AuDHDer 29

austerity policies 291–2

autism 22, 30–43

Asperger Syndrome and see Asperger Syndrome

Autism Spectrum Condition 9, 32, 37, 38–9

Autism Symptom Dimension Questionnaire (ASDQ) 190–91

autism-specific counselling 203, 292

autistic ADHDer/AuDHDer 10–11, 29, 54, 160, 242, 257, 303

definition 30–34, 53

depression and 44, 174–5, 285, 291, 296

diagnosis 8–9, 22, 31–7, 52, 59, 125–54, 185–211, 267–99 see also diagnosis type

diagnostic criteria 22, 31–7, 52, 59, 129, 131–5

disability 28

emigration and 204

extreme male brain theory and 133

genetic factors 31–2

identity-first language and 28

masking and 155–84 see also masking

media and 126, 140–45

medication 44, 200–202

mental health and 28, 284–9

neurodivergent umbrella and 22, 25, 26, 54

neurodiversity model and 21

pretty privilege and see pretty privilege

spectrum 9, 18–19, 31–2, 37, 40–42, 41, 43, 164

spiky profile 29–30

supporting autistic people 22, 37, 38, 40, 41–3, 53, 156, 164, 285

terminology 22, 28–9, 37–43, 53–4

traits 55–92 see also individual trait name

workplace and see workplace

Baron-Cohen, Simon 131, 133

BBC 112, 193, 194, 195, 272

Belcher, Dr Hannah Louise: Taking Off the Mask 296

benzedrine 200

bias, checking your 233, 262–3, 307

bipolar 26, 150

‘bitch’ stereotype 221–2

Black, Asian and minority ethnic (BAME) communities 147–8, 150, 169–70, 174, 192, 226 Black Lives Matter 226

blunt, seeming 33, 69–72, 161, 222, 243

body-doubling 254

body language 33, 34, 65, 79, 166, 171

Borderline Personality Disorder (BPD) 26, 205, 274–8

Bradley, Charles 200

Bradley Hospital, East Providence, RI, USA 200

Brady, Fern 142

brain

acquired/traumatic brain injury 26

amygdala 119

attention regulation 44

busy 2, 6, 17, 76, 115, 235, 273

chemicals/neurotransmitters see individual chemical name

extreme male brain theory 133

interest-led 100, 102, 105, 110

literal 5–6, 59–66, 71–2, 75, 230–31, 276, 287

object permanence and 106–7

prefrontal cortex 97–8, 119

working with 241–7

bright lights 36

Brown, Brené 297

CAMHS (NHS Children and Adolescents’ Mental Health Service) 271, 272, 273, 286

camouflaging 156, 164, 171, 177, 258, 295–6

CAT-Q (Camouflaging Autistic Traits Questionnaire) 295–6

Canada 204

CAT-Q (Camouflaging Autistic Traits Questionnaire) 295–6

CBT (Cognitive Behavioural Therapy) 272

change, struggling with 2, 35, 36, 74–5

changing activity or task, constantly 110

chat, checking in for a 299

cisgender 129, 133, 134, 135, 148, 228, 279

Clarke, Robyn 230–31

Clement, Charli 172

combined type ADHD 47, 51, 284

communication

‘blunt’ 33, 69–72, 161, 222, 243

non-verbal 33, 38, 65

social 32–4

workplace and 254–5, 258–60

community

neurodivergent 21, 28, 137, 142, 143, 152, 289–90, 291, 297, 299, 302

(un)masked 13, 115, 157, 181–3, 195, 198, 201, 211, 243, 252, 306, 308–9, 312

Conservative Party 291–2

conversation

effort and 171–2

fidgeting and 115

noticing small details, patterns, smells or sounds that others might not and 78, 79, 80–81

rehearsing 161–3, 165

say how you feel, finding it hard to 72–4

social-emotional reciprocity and 33, 50, 63–4, 72–4, 78, 79, 80–81

co-occurrences 22

co-occurring ADHD 29–30

counselling 5, 203, 271, 292

Covid-19 pandemic 196, 258

c-PTSD (Complex Post Traumatic Stress Disorder) 278

Cro, Tanisha 229

danger

pretty privilege/gender and 222–5

sense of 116–18

deficits

ADHD and see ADHD

as differences 24, 32, 52, 54, 177, 290

non-verbal communicative behaviours used for social interaction and 33–4

persistent 32

relationships and 34

social-emotional reciprocity and 33

depression

ADHD and 200, 202, 274, 280–83

autism and 285–6, 291, 296

antidepressants 3, 43, 202, 272

anxiety related depression 272

autism and 44, 174–5, 285, 291, 296

masking and 171

Ritalin and 200

desk

location 254

permanent, allocated 254

sitting/standing 250–51

detail, attention to 30, 49, 76, 77–82, 249

diagnosis

ADHD see ADHD

autism see autism

late see late diagnosis

media and 126, 140–45

medical see medical diagnosis

mental health and 267–99

misdiagnosis see misdiagnosis

multiply-marginalized people and 126, 147–51

number of, rise in 125–7, 137–40, 152–3 see also shift, the

post-diagnosis life 11–15

self-diagnosis see self-diagnosis

spiky profiles/co-occurrence and 29–30

timely 118, 214, 290–91

undiagnosed see undiagnosed

unmasking and 10, 11–15, 155, 160, 162–4, 168, 175, 177, 181

women and see women

diagnostic criteria 21–2, 160, 190, 192, 208, 210

ADHD 22, 44–51, 52–3, 59, 93, 97, 119–20, 129

autism 22, 31–7, 53, 59, 129, 131–5

dictaphone 249

diet 35, 36, 163

difference

awareness of 1–3, 11, 16, 27, 190, 218–19, 220, 222

‘condition’ term and 25

deficits and 32, 52, 54, 69, 177, 290, 304

understanding and acceptance of 23, 24, 67–8, 232–3, 292–3

digital notepad 249

disability

ableism and see ableism

acceptance of 174–5

ADHD as 9, 11, 16, 21, 28, 129, 133, 134, 152, 284

autism as 9, 11, 16, 21, 28, 31, 38, 129, 133, 134, 152

bias and 307

camouflaging and 156

co-occurring 18, 134, 154, 164, 290

diagnosis 185, 189, 191, 193, 198, 203, 207, 208, 214

identity-first language and 54, 303

learning 19

loneliness and 299

Personal Independence Payment (PIP) 203

pretty privilege and 214, 215, 218, 222, 225–8, 229

undiagnosed 91, 304

workplace and 251, 256

disturbed patterns of thinking 276

ditzy blonde stereotype 220–22

divorce 284

Dodson, Dr William 119, 120

dopamine 47, 100, 110, 200

Dragon 249

DRD2 gene 46

dress code 254, 260

dropouts, school 40, 129, 284, 286, 301

Diagnostic and Statistical Manual of Mental Disorder

DSM–4 37

DSM–5 32, 37, 48, 120

dyscalculia 26

dyslexia 26, 129

dyspraxia 26, 129, 150

earplugs 144, 250, 295

eating disorder 117

effort 50, 162, 166, 172, 183, 282

Ehlers-Danlos Syndrome 89

Ellie 1.0 240

Ellie 2.0 240–41

Elvanse 201

EMDR (Eye Movement Desensitization and Reprocessing) 272

emigration 204

emotional impermanence 108

emotional instability 275

emotional regulation 41, 45, 98, 118, 200–201

epilepsy 26

eugenics 38

Evans, Milly 172–3

Evara, Paff 173–4

executive functioning 30, 41, 44, 45–7, 52, 88–9, 97–9, 116, 184, 201, 306

extreme male brain theory 133

eye contact 33, 41, 42, 68, 143, 144, 160–61, 162, 164, 171, 172, 190, 192, 222, 262

facial expressions 33–4, 65, 70, 161

fatigue 200

fidgeting 47, 50, 110–15, 169

toys 110–11, 112, 114–15, 144, 250

finances 279

risky financial behaviour 117

struggles with 284

firings 284

flappy hands 35, 88, 156, 169

flexibility 35, 46, 89, 98, 113, 292

workplace 245, 246, 253, 254, 257–8

focus 30, 36, 44, 47, 49, 81, 98

hyperfocus 44, 47, 101, 253

inattentive traits 99–111, 115, 117

workplace and 113, 249, 250, 253, 261

foods 35, 36, 68, 80, 82

forgetfulness 36, 47, 49, 103–4, 106–9, 173, 221

forgiveness 91, 123, 140, 176, 177, 189, 302, 304

friendships 1

appearance/pretty privilege and 217–20

autism assessment and 208–9

autistic masking and 161

emotional impermanence and 108

maintaining, difficulty 34, 108, 129, 139, 178, 191

making, difficulty 2, 3, 8, 34, 68–9, 77, 146, 191, 309, 312

neurodivergent 78, 84, 123, 155

(un)masked community and 115, 181

functioning labels 38–40

gender 19

-affirming healthcare 204–5, 206

assigned female at birth (AFAB) 48, 151, 192, 223

assigned male at birth (AMAB) 48

autism and 133, 134

cisgender 129, 133, 134, 135, 148, 228, 279

diagnosis and 148, 150–52, 164, 185, 192, 204–7

marginalized due to 9, 12, 134, 136, 138, 148, 150–52, 164, 185, 192, 204–7, 218, 220, 221, 222, 223, 224, 267, 290

non-conforming 204–5, 208

pretty privilege and 213, 218

generalized anxiety disorder 3, 112, 272

genetics

ADHD and 45–6, 120

autism and 31–2

‘neurodivergent’ term and 25

gentle with yourself, being 91, 183–4, 302, 304, 305–6

geographical privilege 279

George, Dr Alex 142

Google 13, 59, 190, 241

Google Meet 249

Xi Days event, New York 179–90, 261

GP 3, 190, 196, 271

Grammarly 104, 249

Great Influence 84–5

Great Place to Work 258

Guardian 195

Haig, Matt 142

hallucinations 277

Hamer, Jenny 179–80

Hammond, Tiffany L. 169–70

Harvard Medical School 117

Harvard University 45–6

headphones 82, 86, 180, 250, 260, 295

Heartbreak High 142

Hidden Disabilities 227–8

Hispanic children 147–8

Holliday, Georgia 196

hormone replacement therapy 205

Hull, Laura 166, 295–6

hybrid work 254, 257

hyperactive and impulsive traits 111–21

acting without thinking/having little to no sense of danger 116–18

fidgeting 114–15

mood swings, irritability and a quick temper 118–21

unable to sit still/excessive physical movement 111–13

hyperactive type ADHD 47, 50–51, 52

hyperfixation 107, 278

hyperfocus 44, 47, 101, 253

hypermobile joints 89

hypnotherapy 272, 273

identity-first language 28, 42, 53, 303

imposter syndrome 198, 248

inattentive traits (difficulty concentrating and focusing) 97, 99–111, 114

attention span, short/easily distracted 99–100

changing activity or task, constantly 110

forgetful or losing things, appearing 106–9

instructions, unable to listen to or carry out 110

mistakes, careless 103–6

organizing tasks, difficulty 110

stick to tasks, unable to 110

inattentive type ADHD 47, 48–9, 50, 51, 220

Independent 240

infodumping 33

inhibition/impulse control 30, 45, 98, 116

Instagram 170, 294–5

interoception 89, 178

irritability 118–21

John Carroll University, Ohio 191

Jones, Carly: Safeguarding Autistic Girls 87, 224, 274

judgements, reframing 123

justice, strong sense of 88

Katy, Emily 135

kindness 14, 57, 77, 86, 108, 121, 162, 171, 183, 197, 208, 232–3, 263, 289, 305

language 53, 303

autistic spectrum and 41, 42

body language 33, 34, 65, 79, 166, 171

changing 25

identity-first 28–9, 42

importance of 53, 303

non-binary 207

person-first 28–9

reframing 21–2

skills/acquisition 38

late diagnosis 12, 13, 112, 126, 136, 140, 145–7, 220, 223, 243, 267–99

difference, understanding and acceptance of 292–3

media and 126

mental health and 267–99

multiply-marginalized people and 126, 147–52, 153

neurotypical standards, holding yourself to 294

research into experiences of multiply-marginalized neurodivergent people and 289–90

sensory needs, honouring 294–5

support for those who are diagnosed 291–2

supporting yourself 268, 293–7

timely diagnosis, access to 290–91

women and 112, 126, 145–7, 153

line manager, meetings with 255

lining up objects 35

listening

appearing to be unable to listen 49, 110–11

to your body 178

lists, making 90, 91, 122–3

literal thinking 5–6, 59–66, 71–2, 75, 230–31, 276, 287

lost generation, undiagnosed 12, 125–54

media and 126, 140–45

multiply-marginalized people and late diagnosis 126, 147–51

shift, the 126, 137–40

slipping through the net 126, 129–37

women and late diagnosis 126, 145–7

loud noises 36, 75

lunch break 253

March, Ricardo Menéndez 204

Maskell, Leanne 228–9

masking 60, 72, 79, 145, 155–84, 217, 219, 242, 295–6, 297

camouflaging 156

definition 155–6, 157, 160–67

gentle with yourself, be 183–4

mimicking 156

negative effects 157, 170–74

neurodiversity-affirming, being more 182–3

over-compensating 156

origins of 157, 167–70

safe space 184

unmask, beginning to 157, 174–80

(un)masked community 157, 181–2

McGuinness, Christine 142, 220, 272–3

media 59, 83, 97, 111, 118, 126, 140–45, 153, 185, 204, 211, 220, 306

social 27, 84–5, 125, 131, 137, 186, 195–7, 210, 280, 288

medical diagnosis 8, 31, 33, 43, 52, 186, 193–211, 251, 270, 290, 291

criteria see diagnostic criteria

risks 203–9

why someone might want 197–203

medical model 21, 48–9, 192

medication 9, 43–4, 52, 118, 200–202, 210, 241, 283, 307

memory skills 30, 41, 42, 45, 98, 221, 249

mental health 40, 43, 44, 52, 67, 136, 139, 149, 171, 200, 219

ADHD and 28, 44, 281–4

alone, remembering you’re not 298, 308

autism and 28, 284–9

Borderline Personality Disorder (BPD) diagnosis 274–8

late diagnosis and 267–99

suicide and 267–8

supporting neurodivergent people 289–93

supporting yourself 293–7

system 268, 271–81

workplace and 247, 257, 258

Mental Health Network 292

#MeToo 225

menu of accommodations 256

methylphenidate 200

mimicking 33, 41, 156, 162, 278

mindfulness 272

misdiagnosis 112, 130, 125, 126, 129–37, 148, 150, 153, 181, 205, 267, 290, 291

misogyny 150, 167, 221, 222, 226

ableism and 214, 228–31

mistakes, careless 49, 103–6

monologuing 33, 276

mood swings 118–21

motor movements 35

multiply-marginalized people 19, 290

late diagnosis and 126, 147–52, 154, 192

misogyny and ableism in 214, 228–31

National Autistic Society 31, 134, 148, 235, 297

National Health Service (NHS) 9, 44, 59, 64–5, 87, 97, 99, 109, 193, 194, 200, 203, 206, 271, 291–2

Nazi Germany 37–8

negative comments 120, 281–2

neurodevelopmental conditions 25, 44, 185, 189, 221

neurodivergence

appearance and 213–33

definition 25, 27–8

diagnosis see diagnosis

difference and see difference

masking and see masking

media and 140–45

mental health and see mental health

models for explaining 21–2

neurodivergent people, spending time with 179–80, 308–9

neurodivergent umbrella see neurodivergent umbrella

neurodiversity-affirming 44, 54, 182–3

neurodiversity model 21

women and see women

workplace and see workplace

Neurodivergent Lou 189–90

neurodivergent umbrella 22, 25–54, 144, 304

list of conditions 26–54

remembering 54, 304

term 25

New Zealand 204

Nigg, Joel 116, 119

noise-cancellation

earplugs 144, 295

headphones 250, 295

non-binary 204–7, 223, 231

non-tech products/services 250–51

non-verbal communicative behaviours 33–6, 38, 42, 65, 164

body language 33, 34, 65, 79, 166, 171

non-visible disability 227–8

noradrenaline 200

noticing 77–81

object constancy 106–8

object permanence 106–9

OCD (Obsessive Compulsive Disorder) 26

organization/disorganization 46, 47, 98, 123, 221, 249, 251

Otter.ai 249

outcome-based goals 257

over-compensating 156

pain threshold 36

panic attacks 2, 161, 271, 274

panic disorder 272

Panorama 194

pass the mic 148, 154

Perkins, Ellie 294

persistent deficits 32

persistent differences 32

person-first language 28–9

Personal Independence Payment (PIP) 203

picking nails 35

planning and prioritization 46, 98

prefrontal cortex 97–8, 119

pretty privilege 148, 213–32, 279–80, 286

ableism and misogyny, interaction of 214, 215, 228–31

bias and 233

‘bitch’ stereotype 221–2

dangers of 222–5

ditzy blonde stereotype 220–21

kindness and 232–3

personal appearance, misconceptions of disabled person 225–8

personal appearance, social interactions and 217–25

Price, Dr Devon 79, 168, 287–8

prison 117, 283

private assessments 9, 194, 252, 291

Psychiatry UK 131

queer people 134, 142, 151–2, 174, 206, 207, 232, 290, 307

quiet space, allocated 254

racism 150, 167, 226, 230

rage 275

Rain, Eliza 149

Reddit 195

rejection sensitive dysphoria (RSD) 88, 120–21

repetition 35, 75, 76, 86, 88, 147, 250, 278, 295

Respect for All 292

restricted patterns of behaviour 32, 35–7

Ritalin 200

rocking backwards and forwards 35, 88, 111, 141

RODBT (Radical Openness Dialectical Behavioural Therapy) 272

routines and rituals 29, 35–6, 41, 42, 74–7, 147, 201–2

rudeness 33, 69–72, 161, 222, 243

safe space 179, 181, 184, 308–9

sameness 35–6

Sawalha, Nadia 142

say how you feel, finding it hard to 72–4

school

ADHD and 49, 51, 97, 103–6, 109, 111, 112, 115, 141, 200, 230

dropouts 3, 40, 129, 240, 284, 286, 301

mental health and 2, 217, 218, 219, 271, 272, 279–80, 285–9

mistakes, careless 49, 103–6

transition from high school to university 39–40

women/late diagnosis and 146, 147

Scope 226–7

Scott-Lee, Caitlyn 285–6, 288

scripting 36, 161, 171

self-diagnosis 31, 43, 52

medical diagnosis and 31, 185–211

social media and 186, 195–7

validity of 186, 189–94, 211

self-esteem 104, 175, 282

self-monitoring 45, 98

self-regulation 88, 98, 114, 173, 250

Sense 299

sensory

-friendly workplace 260–61

input 27, 36, 68, 80, 171, 250, 260, 274, 276, 277

needs 163, 180, 198, 275, 294–5

sensitivities 30, 143, 177

sexual violence 222–5

shift, the (why more people might be getting diagnosed now) 126, 137–40, 152–3

shifts, working set 253

Siegel, Max 151–2

Singer, Judy 25

sitting/standing desk 250–51

sitting still 110, 111–13, 115 see also fidgeting

slipping through the net (undiagnosed) 126, 129–37

social-emotional reciprocity, deficits in 33

social interactions 30, 33–4, 38, 41, 42, 67, 169, 214

anxiety about 66–7

personal appearance and 217–25

social communication 32–4

social media 27, 84–5, 125, 131, 137, 185, 186, 195–7, 210, 280, 288

socioeconomic privilege 148, 279

special interests 30, 33, 36, 41, 57, 83–7, 107, 131–2, 136, 161, 166, 173, 178–9, 180

accommodating 87

interest-led brains, ADHD and 100–102, 105, 110

leaning into 178–9

monologuing or infodumping about 33

what it actually means and how it might actually show up 83–6

spectrum, autism 9, 18–19, 31–2, 37, 40–42, 41, 43, 164

spiky profile 22, 29–30

stim toys 88, 180, 250, 261

stimming 35, 41, 88, 114, 173

strengths, focusing on 180–81

subscriptions/services/technology 249–50

suicide 171, 267–8, 285–9, 296

Sukhareva, Grunya 135

surprises, minimize 261–2

support

ADHD 22, 52, 149, 198, 199, 200–203, 227, 230, 290

autism 22, 37, 38, 40, 42–3, 53, 156, 164, 285

diagnosis and 291–2

yourself 268, 293–7

Sykes, Melanie 142, 220

talking

talking therapies 3, 43

time to talk 298–9

task initiation 46, 98, 110

temper 118–21

temperature regulation 87

terminology 22, 28–9, 37–43

Thomas the Tank Engine 142

tic disorders 26

TikTok 84, 111, 185, 194–5, 196

TODAY 221

Tourette’s 26, 196

traits

ADHD 93–123

autistic 55–92

combined type ADHD 51

‘desirable’ 38

hyperactivity 50–51

inattention 49

personality 147

word 49

trans people 134, 143, 148, 151, 152, 192, 204–7, 290

Trans Pride Manchester 205

undiagnosed 10, 74, 85, 91, 125, 126, 129–37, 140–41, 148, 153, 304

masking and 155, 160, 162, 164, 181

media and 140–45

medical diagnosis and 197–8, 199

mental health and 267, 269, 273, 274, 277, 278–9, 280, 281, 282, 284, 286, 290, 291

multiply-marginalized people and 147–52

pretty privilege and 213, 219, 222–4, 232–3

shift, the (why more people might be getting diagnosed now) 126, 137–40, 152–3

slipping through the net 126, 129–37

women and 145–7

workplace and 235–6, 247–8, 256

University College London 258

unmask

beginning to 174–80, 295–6

(un)masked community 13, 115, 157, 181–3, 195, 198, 201, 211, 243, 252, 295–6, 306, 308–9, 312

Unmasking My Autism (documentary) 272–3

unstable relationships 278

validation 9, 11, 12, 13, 15, 17, 19, 26, 30, 74, 75, 92, 137, 152, 181, 186, 211, 228, 281, 298, 301, 306, 308, 313

self-diagnosis and 189–94, 210, 211

visual timer 250

voices, hearing 276, 277

waiting lists 193–4, 251, 291

West, Arlo 205–7

What by When and Why basis 61–3, 254–5, 259–60

white privilege 279

Willis, Ella 150–51

Wing, Lorna 136

Wise, Jane 27

women

ADHD and 6, 9, 129–30, 133, 267

autism and 6, 9, 112, 136, 145–6, 164, 192, 268

Black 150, 229–30

cisgender 148

dangers faced by 222–5

diagnosis and 112, 126, 136, 145–52, 185, 192, 218

ditzy blonde stereotype and 220–22

marginalized 134, 138, 147–52, 218, 290

neurodivergent, visibility of 143

pretty privilege and 220–25

suicide and 267–8

workplace 49, 62, 79, 82, 113, 115, 153, 184, 203, 235–66, 305, 307

accommodations, accessing 236, 251–5, 264

accommodations, asking for 236, 247–51, 264

non-tech products/services 250–51

subscriptions/services/technology 249–50

accommodations, menu of 256

accommodations, reframing thoughts around 264–5

bias and 262–3

brain, working with rather than against 241–2

broken system 236, 240–47, 264

communication and 258–60

flexibility and 257–8

inclusive 237, 255–63, 264

mental health/recovery days 257

outcome-based goals 257

sensory-friendly 260–61

surprises, minimizing 261–2

work from home/hybrid work 257, 258

working hours 253, 257

Write & Sunny 294

Wycombe Abbey 285

YoungMinds survey 271–2

yourself, being 153–4, 179, 305, 308–9

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First published by Penguin Life in 2023

Copyright © Ellie Middleton, 2023

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