This article was written by autistic advocate Kieran Rose and was originally published on his website The Autistic Advocate. It is reprinted here with his permission.
I look around at my life now and I see a wife and children, who I love beyond imagining and I think to myself “If there was something wrong, something out of the ordinary, would I see it, would I miss it?”
Then I look back at my parents and wonder: how did they miss me?
After I was diagnosed I harboured a lot of resentment and anger to different people, for very different reasons. For myself, I grieved.
I grieved for my childhood. I grieved for the little boy lost and alone watching the children play outside.
I grieved for the early teenager, driven literally crazy, driven to burnout by a world that made no sense, by a world that leered and criticised, by a world so full of noise, driven to commit suicide.
I grieved for my later teens. Still having the same problems, except now dropping out of college, unable to keep up, unable to filter out the noise, the sights, the people the pressure, driven to drink and drugs.
I grieved for my early twenties, burning out of work, commuting for hours on a train to a job, in the middle of one of the noisiest, smelliest and unfriendly cities in the world, to a place of work where nobody gave direction, or saw that you were free-falling.
I grieved for the fact that minute upon minute, hour upon hour, day after day, year after year I stuffed it all down inside me, filling myself, all the while grasping to be something I could never be:
‘Normal.’
I grieved for the person that had gone his whole life being hurt whenever anyone touched him and not telling anyone. The boy that hid the fact that touching burns him, even as a child.
Out of everything, I grieved for the fact that nobody saw any of this or did anything to help.
Then as much as now, I truly believe that my family see me as the odd little boy, quietly playing in the corner, or reading a book, or watching the other children through the window.
How did they miss me?
Part of me makes excuses for them, especially my Dad.
He was at best a terrible Father. I genuinely don’t think this was his fault, I think he had more Autism and ADHD issues than most people, in terms of his complete lack of coping strategies. He was literally loopy at times, so manic and unable to simply stop moving, so impulsive.
When he was around (which wasn’t often) his life seemed to involve mostly napping, drinking and focusing on whatever he was interested in at the time; certainly not his children. Looking back now I see that he couldn’t see outside himself, not because he was selfish, but because it was too much for him to deal with. So in a way his children were secondary because he couldn’t focus on us.
My Mum is an interesting one.
She built her life on campaigns, whether that be fighting lawyers over my Aunt’s medical malpractice case, fighting poll tax, fighting people’s unfair dismissals. She was so busy fighting for everyone that she missed what was going on under her nose.
When my eldest nephew was born, and ran out of my sister’s womb and didn’t stop running, she threw herself into fighting for diagnoses and treatments and Disability payments. She threw herself into ADHD and Asperger’s Syndrome (as it was then) big-style, buying every book on the subject, going to every conference and parent support group imaginable.
What’s interesting was that she still missed it.
She became a self-taught expert on Asperger’s, who stayed up till 3am to email Tony Atwood, in Australia, because she knew he’d be up (This was in the late 90’s to early Noughties).
Yet, she still missed it.
It’s funny, I’ve thought for a long time that she might be Autistic too and it’s not till I’ve literally just written that, that I’ve thought: “She had some intense special interests then!”
A lifetime of being bullied, a lifetime of not understanding the world, of being an outcast, separate from everyone else and the only reason it stopped being missed was when i picked up one of her books and in the back was a list of questions. Questions to answer if you thought you might be Autistic. I like tests, so I did it. Then scoring it at the end… Oh.
How did they miss me?
As a child growing up, I was the quiet one, the loner who played quietly in the corner and was left alone.
I don’t remember discovering books, but I remember reading, oh boy do I remember reading. Twice weekly visits to the library, staggering out with a stack of seven or eight books in my arms in a Public Library where the Librarians knew me by name, but I didn’t know theirs, not even recognise their faces.
According to my Mum I was fully reading by age four. I remember we had a little bookcase in our kitchen that was filled with a random selection of James Herbert, George Eliot, Emily Bronte, Dostoevsky and Tolkien. I can recall the smell of them: they were old and musty; and the touch: the spines were worn smooth.
I wouldn’t be able to tell you which book i picked up first, or the second but I’d read The Lord of the Rings by the time I was seven.
That’s not normal behaviour. I actually have a retrospective diagnosis of Hyperlexia.
How did they miss me?
I hid it at school, I remember actively thinking, that I had to cull my reading, make it seem like there was nothing different about me, nothing that would make me stand out.
At playtime I didn’t know what the hell was going on. I’d try to join in, fail, get hit or pushed aside and ignored, so I’d end up playing by myself, circling the playground or finding solace by myself in the tiny copse of trees on the edge of the school grounds, searching for patterns amongst the leaves or in the twigs on the ground.
How did they miss me?
The bell would ring and we’d go back inside. I don’t know what was worse, the roaring noise of the playground or the deafening silence of the classroom, as we sat cross legged on the floor, listening to the teacher prattle on about letter and word combinations that I already intuitively knew or making us do some horrific thing like painting or cake making, when all I wanted to do was read.
It was here that I discovered my ability to disappear inside my own head.
I remember in one class was a picture book about the film The Dark Crystal.
As I turned the pages and saw bizarre creatures and landscapes, one thing in particular drew my attention. There was an Orrery of the heavens as seen from whatever planet the film was set on:
I kept coming back to it and back to it. Every day I was desperate to get to school, just so I could find this book and look at this picture. It was fascinating, not only that there were suns and planets and moons, but the colours: brass and golds and coppers, mixed with blues and greens. It was a place I wanted to be, so I went there.
There comes a point when things become hazy.
I must have moved out of the class and up a year, so the book was lost to me forever (If I’d known to ask I probably would have been given it). School after that point becomes a few flash memories of individual moments. For the rest it is a wall of pain, hurtful names, wave after wave of sensory information, a mass of confusion and wanting to be left alone because it was safer, because i had somewhere better to be.
How did they miss me?
The whole time growing up I was in pain. Western culture and society seems to be built upon the innate ability of people to touch other people without permission. Neurotypical people talk about Autistic people not understanding personal space, yet all they bloody do is touch you! They walk past and pat you on the head or ruffle your hair. They want to shake your hand when they meet you, or slap you on the knee when they tell a joke, or put their hand on the small of your back as they push past you, or hug you because they feel like it, or mad old Aunts want to kiss you with their their big, wet, lipstick-covered, disgusting, trouty lips.
Every time one of those thing happened when I was a child, every time somebody laid their hands on me, I had one sensation:
Burning.
For as long as I can remember, whenever anyone has touched me, it’s burnt.
I don’t get left with a physical mark, but the pain is incredible, like someone has taken a car cigarette lighter and held it against me, wherever the person has touched me and in the exact size and shape of their hand, finger, lips; whatever they had touched me with. I feel the rush of fire burn into me and at the same time the fire exploding in my head.
Like a good Autistic, child and adult, I masked. I learnt to push the pain deep inside instantly, the epitome of grinning and bearing it. Can you imagine a lifetime of being burnt repeatedly? Over and over, being hurt all the time and not being able to tell anyone about it?
Growing up there was only one person in my life that it never happened with.
My Granddad was the sort of man that didn’t mind his grandchildren clambering all over him. He smelt of Whiskey and pipe tobacco and had a bald patch on the top of his head, covered in Liver Spots and a little white fuzz of hair like soft stubble, that i used to like pressing my hand on. When I touched him it felt warm and I’d get the tiniest vibration on my palm, like a little fizz of bubbles against my skin.
I used to sit on my Granddad’s lap and gently pat his head for hours. And nobody thought that was strange…
As to why I could touch him and he could touch me, without it hurting, I don’t know. I do know it’s only ever happened with one other person and I’ve been in a relationship with her for 17 years. Slightly different to with my Granddad, when I touch Michelle i get warmth that radiates up from wherever we’ve touched and covers my whole body. The bubbles aren’t just on my skin, they’re inside the pit of my tummy and I get crackles like electricity down my back. It’s an intense and amazingly pleasurable experience, which makes me relaxed and comforted and, at the same time, deeply connected to her.
How did they miss me?
I remember sounds hurting my ears. Loud laughter, traffic, sirens and alarms. I remember being dragged to the supermarket every Saturday morning with my Mum and Nan and wanting to scream to cover up the noise and the lights and the smells and the colours and the people.
I remember hearing a lot “Oh don’t mind him, he’s a little shy” as I’d get dragged out from wherever I was hiding, be it behind my Mother, or on the stairs or in my bedroom and made to speak to some random stranger, or visitor or relative I had no interest in and whose questions I didn’t want to answer.
All i wanted to do was read and lose myself inside my head and shut out everything.
But nobody noticed.
How did they miss me?
As much as I knew a lot about Autism, had supported my Sisters, had been dragged on the campaign trail with my Mum, I knew nothing about Adult Autism. It never even occurred to me that Adults had Autism. Everything you read, everywhere you looked, everything anyone talked about was child-related Autism.
All the National Autistic Society provided was support for children. I’ve never understood why, considering they were established in the 1960’s, you’d have thought somebody somewhere would have realised that all these children they were ‘helping’, were growing into adults…
There was no on line community at the time. I mean I’m sure there were in Yahoo groups and talking to each other in MSN Messenger (there are people reading this that have no idea what I am talking about – yeah, I’m old, deal with it), but not anything that I was aware of. My only knowledge of Autism literally was Rain Man, but that’s OK, because we weren’t talking Autism then! It was all Asperger’s, which is a whole different thing because they’re super clever, yay! How little I knew back then.
Do you know what the sad thing is?
Thinking has barely moved on from that place at all.
So, one day I was flicking through a book on Autism (I couldn’t tell you which one, we had lots) and at the back was a set of questions. I went through them one by one and, for each one, I thought “Oh it’s me!” I scored myself and i had something like 39 out 40, which meant it was possible I had Asperger’s and should seek a diagnosis.
It was a Sunday and I knew my sisters would be coming round for Sunday dinner, so I went downstairs and my eldest Sister and her husband were there, with my Nephew tearing around the house at 400mph. So, I dragged her into the kitchen and did the test on her. She scored the same as me. My Mum finally took notice that we were both hunched over this book and came over to find out what we were doing.
How did they miss me?
Several months later in 2003, I found myself walking into the CLASS (Cambridge Lifespan Asperger Syndrome Service) Clinic in a village near Cambridge that had, what I thought, through my anxiety, the funniest name I had ever heard and so couldn’t stop laughing about: Trumpington. Yes, of course i spent a lot of that day making farting noises.
I sat in the office of Simon Baron-Cohen. Yes. THE Simon Baron-Cohen, eminent, world famous Autism researcher and Psychopathologist.
I was awestruck.
Dumbstruck.
For before me sat the cousin of Ali G:
AKA Borat,
AKA Sacha Baron-Cohen.
Not even the same person. They only have the vaguest of resemblances, yet all I could see was a thick gold chain round Professor Baron-Cohen’s neck with the golden letters “AUTISM” spelled out.
Yeah, he wasn’t actually wearing a necklace like that.
Didn’t stop me shouting out: “IZ IT COZ I IZ ASPERGIC!”
I actually did that last part.
For shame.
Fart jokes and catchphrases aren’t my forte at the best of times, let alone to Famous people’s cousins.
I did say I was anxious.
Funnily enough I walked out of that office with a diagnosis. Simon and I spent nearly the whole day talking, he spoke to my parents, my sister, Michelle. He was a nice guy, it was not till a long time later that I found out that his theory of Mind Blindness effectively cost a generation of Autistics diagnosis, help and support. Something I believe he is starting to recognise himself. Maybe not quite quickly enough.
A few weeks later I had a letter that confirmed it.
I was Kieran Rose, Asperger’s Syndrome.
I was confused at first.
Then I got angry.
Which kind of brings me full circle to where I started with this article.
How did they miss me?
I spent a long time (years), being angry and, I think, it was not until I recognised myself in Quinn after he was born, nearly ten years later, that I finally started to come to terms with it. I had no support or direction and no community.
Michelle and I had no idea what to do with it, to her I was just ‘Kieran’, I think she’ll freely admit that she’s only truly starting to get her head around the trauma that Autistic people experience from Society and just how badly it can wreck us, in the last few years, as it’s taken me so long to learn how I’ve been affected. Because I had no community for so long, I never thought to look for one, so in a way, despite my diagnosis, I was as unknowledgeable, ignorant and naive as an undiagnosed Autistic.
I couldn’t recognise Burnout when it came, so I went through it as an undiagnosed person would, watching my life crumble and fall apart before my eyes.
My huge sensory issues were simply my day to day dealings and I didn’t understand that I could do anything about them, or to minimise them.
Professor Baron-Cohen said something when he interviewed me, that has stuck with me for 15 years now and I never understood the significance of it then. He said that in all his years working with Autism and Asperger’s, “I’ve never met someone who could hide in plain sight so well.” The realisation came to me recently that he’d been able to see through my Mask, but i hadn’t even understood that there was a Mask.
I didn’t know about these things, so life had carried on post-diagnosis. No changes were implemented, the Mask stayed well and truly stuck on.
Fast forward through a lot of trauma and my Mask is long gone.
I am proudly Autistic:
If I can’t stand the noise, I leave the room. Or gag my children. Or both for the double win…
If I don’t want to be around people, I tell them.
If I’m getting overwhelmed I say something.
I shake people’s hands if I want to, I usually don’t though unless I like the look of you and can bear the pain.
If somebody touches me without permission my reflex is to punch them (I try not to!). Holding my wife’s hand still makes electricity crackle down my spine.
How did they miss me?
I had the opportunity to spend the last two years of my Dad’s life very close to him.
He moved from Essex to Durham which was probably the stupidest decision he ever made considering he had: Emphysema, Asbestosis, Osteoarthritis, Diabetes, and heart trouble. But that was him. He just upped sticks and left his ‘friends’ and the rest of the family.
He obviously got sicker and sicker over the two years he was up here and I cared for him to the point that in the four months before he died, I spent more time at his house than my own.
It was a stupid decision to move up like I said and certainly not one I encouraged as our relationship had always been a bit strained. He’d never been someone I could talk to really.
But, in hindsight, for me, it was the best decision he could have made.
I got the opportunity to spend time with him and talk to him like I never had before. Over time I came to the realisation, that the earlier point i made was right, he couldn’t deal with us, he couldn’t handle the emotion or the empathy he felt, so he switched it off. He was surrounded by friends and family and was desperately lonely, locked inside himself.
The best relationship I had with my Father was in the months before he died.
He missed me because he was too busy struggling to stay masked himself.
How did they miss me?
My Mum, remains an enigma. She’s well into the road of Alzheimer’s now. Not quite at the point where she doesn’t know who we are, but certainly teetering on the brink. The ironic thing is, after throwing herself into the lives of her Grandchildren, fighting for diagnosis and support, the biggest reason she missed it in her own children is, I think, because she missed it in herself. I don’t even think she knew she was Masking.
The funny thing about Alzheimer’s is that it exaggerates the sufferer’s personality. As her support scaffolding and coping mechanisms have fallen away, she’s revealed herself to be the most Autistic of us all.
How did they miss me?
I think, like I have been, they were too held back by their own struggle. They didn’t know to look for something that they couldn’t understand how to cope with themselves.
How did they miss me?
They didn’t, they were me.
*********************
I wonder, with so many of us undiagnosed until later life, if undiagnosed Parents is one of the biggest reasons why. I mean, ultimately Autism is genetic and likely hereditary. It’s got to come from somewhere…