(The frequent misdiagnosis of womxn)
Imagine it is 1993. You are 16. You are obsessed with The Face magazine and rave music and you are really good at being an art student, but not much else, it would seem. You have been told all of your life you are crazily clever and you are destined to go far, but you know deep down you don’t have the mental capacity to go very far at all, because you are not perfect enough; they don’t know you really, they got you wrong.
You are in bed one night and you stare at the red neon of the digital alarm clock, waiting for the minutes to pass; 11:10. 11:11. 11:12. As long as you stay alive to see each minute pass you will be okay; because you can’t breathe and you think you are actually going to die otherwise; 11.59. 12.00. 12.01. After an hour of hyperventilating your hands, feet and scalp are tingling and numb. So you get up, nauseous, creep on dead feet to the room next door and shake your mum awake and tell her you might be dying. The way she looks at you, concerned yet disbelieving, tells you she doesn’t know how to help you.
A few weeks later you find yourself in an office with an old man with white hair in a grey three piece suit, peering over actual half moon glasses on a chain (he doesn’t look happy to see you), pen poised above his notebook from the other side of the standard NHS desk in the standard NHS peppermint green room, asking you tersely how you feel, what is ‘wrong’? He is a child psychologist, or psychiatrist, you aren’t sure which; he is from another world, maybe even the previous century. You say you feel fine because this is mental and you want it to be over so you can go and get stoned and drink cider with your boyfriend at the quarry.
You don’t tell him how you can’t understand why you ‘forgot’ to revise for your GCSEs last summer, so only got 4 A’s when you were told you would get at least 9. That most days you physically freeze when the bus to college comes; your arm refuses to raise to stop the bus, so you watch it drive past your stop and disappear around the corner, then dejectedly walk home and watch Fresh Prince of Bel Air VHS’s all day, feeling really bad because you fucked up again. You care deep down, although your lecturers think you are a lost cause and there is talk of kicking you out of college.
You don’t tell him that you can spend hours lost in a painting but can’t finish an essay until approximately ten minutes before it is due in. That you drink and smoke too much already. That you are as confused as your parents as to why you lose your doorkey every single Saturday night. That you can’t breathe properly and no-one understands. Is this not just what life is like? It must be; either that or you are a complete weirdo. You don’t want to be a weirdo, so you shrug and say nothing.
Yes, dear reader, that girl was me, and it has taken 27 years for me to work out that I wasn’t a weirdo, but neither was I ‘normal’ (by normal read ‘neurotypical’), and that in fact I probably, more than likely, have Attention Deficit Disorder (ADD) or Attention Deficit Hyperactivity Disorder (ADHD), if you put aside the fact that I am about as hyperactive as a sloth.
The doctor who peered at me over his half moon glasses in 1993 wrote to my Mum after our one appointment before he discharged me, and told her I was a typical teenager and I was suffering from panic attacks. A prescription for antidepressants was tucked in with the letter. And so began 27 years of mental health diagnoses thrown at me, and 27 years of thinking I was a lazy failure who couldn’t cope with the world and who would never quite get it right.
I am 44 now, I have two children of my own. My 12 year old son is autistic, my 9 year old daughter is so much like me it makes me melt yet feel petrified at the same time. So, why has it taken this long for me to start getting any answers? An idea of why, even though I am clever, funny, talented and strong, I have always felt lacking in some way? Constantly defeated by fear of rejection and my own imperfections? Why have I never been able to fulfill my unabridged potential? Or hold a decent romantic relationship in my capable hands for longer than a gnat’s breath over all of these years?
My journey to understanding my own brain began a few years ago, when I began fighting for my son’s autism diagnosis and delved into the world of neurodiversity. Until then ADHD was just something hyperactive little boys had; the ones who jump on tables at school, burn stuff down, and lose the plot after too many e numbers. You never really heard about girls with ADHD – I always thought that was because it was so rare.
As I learnt more about autism and other neurological conditions I started to see that neurodiversity truly is a spectrum, a collection of brain differences, and a lot more people are neurodiverse than we have been led to believe down the years and generations. The connections between autism, ADD, ADHD, dyspraxia, dyslexia etc., are not always obvious, but they are there nonetheless; barely visible to the naked eye, strong, interwoven, like nylon thread, sparking iridescent, akin to lit-up neural pathways.
The stark truth is that up until recently, when it came to neurological conditions, it was only the really obvious cases who got a diagnosis. But now we are beginning to understand it is more common than previously thought and more neurodiverse people are standing up to be counted. But so many more are still undiagnosed and misunderstood, especially in the older generations. Mismedicated, misdiagnosed, feeling like failures because we do not fit; square pegs crammed into round holes.
Two years ago one of my closest friends announced ‘I think I have ADHD. I was told all of my life I had depression and anxiety, but I didn’t, I was depressed and anxious because I wasn’t understood and didn’t understand myself either’.
The penny dropped. At first I ignored it, because to face it meant unlearning years and years of my personal truths, as well as facing up to other people’s disbelief and scrutiny again. But the more I read, the more I began talking to people, following other neurodiverse people on social media, especially neurodiverse women, the more I realised this was me as well. And I am angry. All those wasted years, all that therapy, all those pills, all those times I underachieved, all of the self medication; all because I wasn’t seen and understood when I was perused from behind those half moon glasses. Maybe if I had been a boy unable to sit still, unable to mask, I may have got my answers earlier.
Even though the understanding of neurodiversity is becoming more mainstream, females are still not diagnosed with ADHD and ADD as much as boys. Along with autism, it is still seen as a very ‘male’ problem in the medical world. In the mid 1990s Simon Baron-Cohen, a well respected researcher in the field of cognitive neuroscience, even came up with a theory that autism is a case of having an extreme male brain. Others say it is because girls present differently with neurological conditions, in a more complex manner, and the diagnosis model used worldwide is still very much weighted towards testing for the way boys present; proof that even in health matters we are still living in a very patriarchal society.
Women for years have been more likely to be diagnosed with depression, anxiety and personality disorders, or to be labelled as ditzy, disorganised, difficult, or struggling with the pressures of having it all; juggling parenting, career, home and staying sexy and attractive at the same time. But, it is great to see the tide is now turning. My heart sings when I see the strong, sassy young women on Twitter and Instagram standing up and saying ‘I am neurodiverse, that’s why I lose my keys, but, hey! I am also really capable’, when I see the books published by academics in allyship, not in the name of dissection and eradication of the beautiful neurodiverse brain. My heart sings when I see the support and community of the rising ‘neurodiverse squads’, the increased understanding that being neurodiverse isn’t an -ism, it’s a difference. Neurodiversity, at last, is being given a place at the table.
And what about me? Getting to the GP and sitting in front of another NHS standard desk and stating clearly ‘I believe I have ADD’ is still on my massive list of things to do; it is still too scary (yep, demand avoidance is a part of neurodiversity too). But the relief of just knowing I have a reason beyond my own failings for the way I do things and see the world feels enough for me right now. I am off the antidepressants, the panic attacks have stopped, the anxiety is dissipating. I have clarity and new strength and understanding; I can make plans and concoct crazy and exciting life goals, and follow them through, rather than just floating and sinking on waves out of my control. I am coming up for air and see more clearly now. And it feels fucking good.
If you want to know more and love a good book, start here:
Or you can’t go wrong following these neurodiverse women on social media:
Purple Ella https://www.purpleella.com/
Neurodivergent Rebel https://linktr.ee/NeurodivergentRebel
First published for The Everyday Magazine .
[Dedicated to my neurodiverse tribe, in real life and online, especially Tracy V. for helping me see].