With research of neurodivergent conditions traditionally focusing on men, it has been harder for women to get an accurate diagnosis
I experience the world differently
With research and awareness of neurodivergent conditions traditionally focusing on men and boys, it has been harder for women to get an accurate diagnosis and find help. Three women share their journeys and the stigmatising words they’ve learnt to fight against.
Robyn Wilder’s Story
From an early age, I knew two conflicting truths about myself: I was clear, but I was also awful.
Or at least that’s how I saw it. I could read fluently at three, was on the “gifted” programme at school and sat my GCSEs when I was 12. But I could never put a cup away properly, struggled to follow simple instructions and, despite being “gifted”, submitted work so riddled with basic errors my teachers assumed I was mocking them.
The feedback I’ve received from anyone else who’s ever expected anything of me is that I’m actually a toxic, unreliable, wasteful, slovenly liar – but I was never able to work out why.
All loads in my marriage – mental, physical, emotional – were carried by my husband. My children were young enough to consider my absent-mindedness hilarious, and shouted, “Silly Mummy!” several times a day. Eventually things came to a head. I was struggling with debt, laundry and guilt.
Then my mother became seriously ill, and I – not for the first time – began seeing a therapist to help with my anxiety and depression. As I explained this colossal overwhelm, she gently suggested it might be ADHD. I did some googling and came across a piece in The Atlantic by Maria Yagoda entitled “ADHD is different for women”. It explained how under-diagnosed the condition is in women, because they tend to experience symptoms that fall outside the old-fashioned “naughty schoolboy” stereotype.
Three GPs later (I couldn’t possibly have ADHD, they told me, because I was a graduate and a professional), I was finally referred to a consultant psychiatrist for the now-defunct NHS ADHD clinic three towns over. I took a test, scored high for both inattentive and hyperactive ADHD, and was prescribed a hefty wedge of dexamphetamine. I should have received therapy as well, but the NHS waiting list was so long that it is still forthcoming. I also received a grant from Access to Work, allowing me to afford a virtual assistant who helps with the sort of paperwork that would have previously buried me alive.
More than anything, though, the diagnosis gave me hope. The symptoms as they present to women, including emotional dysregulation and sensory overwhelm, fit exactly with all the problems I’ve encountered throughout my life. I wasn’t awful, I have awful symptoms. I don’t have an errant personality – I have an illness.
It’s still a struggle, though. My ADHD medication is classified as a controlled drug, so if I lose some – which I do because, duh, ADHD – I have to file a police report to convince the authorities that I’m not just selling it to youths on the sly. And I’ll never be free of ADHD. But I’m constantly learning new ways to work with it. Always keeping my keys in the same place, for example, means that I don’t go searching for them, and get distracted, and end up an hour later in an unfamiliar room with a shoe in one hand for reasons I’ve long since forgotten. It sounds like a small thing, but it’s huge.
If you recognise even a small element of yourself in what I’ve told you, do some research. Read studies that are specifically about ADHD and women. Pick some ADHD hacks online and see if they improve how you feel. NHS waiting times for ADHD are catastrophically long, so be prepared to stand your ground, but please do seek help. It exists.
Holly Smale’s Story
I knew I was different at three years old.
While other children played, I sat in a corner of the nursery and watched them: confused by what they were doing and why they were doing it. Aware this might become a problem, I started “masking”: pretending to be like other children. It was exhausting, and I wasn’t good at it. What others considered easy, I found an uphill battle, and I was constantly stressed, overwhelmed and traumatised by my huge effort to be “the same”.
As I grew older, these labels became worse, and I absorbed and internalised them all. Isolation became rejection, which turned into bullying and abuse. By the time I hit my late-thirties, I was the multimillion bestselling author of Geek Girl; a success on the surface, but an incoherent, frightened mess inside. I was exhausted, anxious, depressed and filled to the brim with self-loathing. I believed with my whole heart what I had been repeatedly told: that I was broken.
Then, at nearly 40, I was diagnosed as autistic. I’d like to say a professional stepped in, but they didn’t. I had to research, self-diagnose, chase after an NHS diagnosis I was told I couldn’t have, then pay for an expensive private clinical assessment. Because of my gender, I still didn’t fit the male medical, social or media-outlined model of what autism is supposed to look or sound like, and I had to fight to be seen. But finally, I had the one label that would change my life.
After four decades, I’m beginning to appreciate who I actually am, instead of hiding and being ashamed of who I am not. I’m not broken: I simply have a different neurology in a world not built for people like me. I think, communicate, feel and experience the world differently, and there is nothing wrong with it. My autistic brain is perfect, exactly as it is, and I am neither “too much” nor “too little” for anyone.
My diagnosis has also given me the tools to start treating myself with compassion, and life is already so much easier. I manage my overwhelm better: removing myself from situations I cannot handle, using earplugs and eye masks when my senses are painful. I’ve built boundaries instead of changing to fit others. I ask for support and communicate what I need without shame. Finally, I get to choose my own labels.Most of all, I am learning how to love myself. And if you’re reading this and you’re autistic, too – or think you might be – that’s what I want for you as well.
Holly Smale is the bestselling author of the Geek Girl series and The Valentines.
Amelia Perrin’s Story
I didn’t know why I couldn’t control my body the same way others did so effortlessly.
Tourette’s is a strange beast. At its simplest, it’s a neurological condition that means your brain doesn’t send the right signals to your body parts, which can manifest in different ways, individual to each sufferer. For some, it could be swearing and shouting. For others, it might be their limbs moving without them meaning to. It’s a brain problem, but it’s not a problem that stays there – it’s physically noticeable. And while it’s a brain problem, it’s not considered a mental health issue; there are no tablets you can take to make it better, and therapy isn’t quite right for it. Tourette’s can be incredibly debilitating, and both mentally and physically draining. Yet, it’s probably the only incurable condition that remains a punchline in film and TV.
The first time I was aware of my Tourette’s was in high school. I remember a friend asking the teacher to move her away from me, as I was “so annoying to sit next to making that grunting noise” in an exam. Another time in a drama lesson, I was told my character didn’t need to “twitch their face like that”. It was embarrassing, but not being able to communicate why I did things made it worse. I didn’t know why it was so difficult to just be still and silent.
After months of the physical effects weighing on me (having Tourette’s is actually incredibly tiring, the constant fighting against your own body causes physical exertion), I went to the doctors, who immediately diagnosed me. I wasn’t shocked, but I did want to know why I wasn’t swearing involuntarily like the cartoon version of Tourette’s. Involuntarily swearing, a tic called coprolalia, actually only affects a small portion of sufferers – we just see it in the media because it’s “funny”.
However, that’s not to say I might never develop it. The scariest thing about Tourette’s is that a new tic can rear its ugly head any day, with no warning.
While there are no medications or cures for Tourette’s, I had chats with a counsellor to try to further understand it. She helped me explain to others that every involuntary movement, every sound I don’t mean to make, feels exactly like a sneeze. You can try and hold it in, but it’s an almost painful, conscious effort, and you physically can’t override your body for too long. My condition gets worse when I’m tired or stressed, or when I focus on “controlling” it too much. I tic the least when I’m well rested and relaxed, and when I don’t have to talk or think about it. My main advice to friends and partners of sufferers is to not draw attention to it, which not only puts them in an uncomfortable position, but quite literally makes it worse.
The last year has been particularly difficult in a climate where people have (rightly so) tried to stay away from others showing any symptoms of illness. A man shouted at me to “get away from him” when I cleared my throat in a coffee shop. Tourette’s has also been on my mind due to becoming pregnant with my daughter; as it’s passed down genetically, I’m very aware she might also have it. And while this hasn’t put me off having a baby, I can see why it would do for sufferers whose lives have been severely affected by Tourette’s. But if she does have it, I’m glad I’ll be able to spot the signs early, and help her manage the condition, as well as teaching her how to stick up for herself when others don’t understand.