There was a time when my Mum still felt warm to me.
When I was very young, still in primary school, I’d often get horrible migraines, and she’d pick me up and take me home. I’m vomit and cry, then she’d give me Junior Disprol to drink down, soluble paracetamol that tasted terrible, but which helped lessen the pain. I’d lie on the sofa, curled away from the light because it hurt just to see it, burying my face but leaving room for my breath, as just the pressure of it was painful. And Mum would be right there, keeping quiet and making sure I was OK. I don’t know how often I’d get those migraines, but she was always ready to pick me up, take me home, and look after me.
We were very into hugs, as a family. A hug from Mum was the best thing in the world, so cosy and secure, it made everything better. She seemed, to me, to be and endless source of comfort. I remember how she’d sometimes come into school and interact with the other children, and how I felt a small pang of jealousy from seeing her bring some of my toys in for the other kids to play with. But I knew that it meant she was a giver, a teacher. Helping others was just something she did, like a compulsion she had in her.
When her room was still upstairs, before we moved back from Kansas, I’d often go to her at night-time and talk a while. We talked for hours in total, and she was always patient with me, letting me wear out my brain until I felt tired enough to sleep. I remember poking her belly a lot, it was all wrinkled up after having us, I called it her jelly belly because of the soft and squishy texture it had. If she was self-conscious, she never showed it, no hint of frustration that I ever noticed, just calm.
I was very fond of touching things with interesting textures. Hair, jumpers, wood, dirt, anything that felt different. Apparently, Mum said, the other children in my class were used to me touching them, so they didn’t mind it much. They all knew that I had Tourettes, and OCD, and ADD, diagnoses that Mum had to put a lot of effort into getting for me, especially ADD. Our family doctor didn’t believe in it, it wasn’t anywhere near as well-known as it is now.
~
Much later, I’d be met with similar discrimination myself, trying to get ADHD medication before I went to university. Instead, I was prescribed with mood stabilisers that neutered my personality. It was another 5 years before I got my re-diagnosis, and a further 5 years after that before I was put on meds that actually worked for me, granting me access to new modes of calm existence, removing the previously ever-present anxiety and need for motion, and perhaps most momentously, granting me access to memories beyond the most recent sphere of time — something I’d struggled with since adolescence.
~
A moment from before things got really blurry, pre-teen: One night in Mum’s upstairs bedroom, I had a breakdown.
I’d gone away on a school trip to a huge manor, stayed overnight, loads of us. There was a hallway with a painting whose eyes would watch you as you moved, so nobody wanted to get up for the loo after dark. I shared a room with 5 other boys, and Mum had given me some sweets to have while I was there, in a white paper bag from before the time when everything was wrapped in plastic.
As we settled into bed, I gave the bag out to the other boys, who passed it around. I’ve always been a sharer, wanting for little and being happiest when other people have what I have too, it doesn’t feel fair otherwise. I had one stipulation for them though: You can have anything except the big red dummy, a huge strawberry sweet that I was very much looking forward to. But one of the boys, Aaron, decided to take it anyway. This made me quite upset. I couldn’t understand why someone would break my trust like that.
I never really learnt from those lessons though, even as I became an adult. At 19, hanging out with my two closest friends, one of their own friends had come to visit, and had no place to live, crashing on various sofas and floors. I told him he could stay at mine, of course he could, he needed something that I could provide — and, subconsciously, I was still craving for companionship, always surrounding myself with people. I gave him the key to my house, which was the logical thing to do as far as I was concerned. He left, I stayed at my friend’s house, and I want back home the next day to find my TV had gone. He said he’d tried to move it and it broke, and I believed him. He stayed at mine for a while, with more of my things disappearing, but it took me a long time to realise what had happened, both because I was a stoner, and also because breaking someone’s trust still wasn’t something I could understand. I’ve had a lot of bad friends like that.
~
In recent years, one of my uncles offhandedly mentioned my autism, which was news to me. I think he’d mistakenly thought that I’d already been diagnosed, mixing it up with my ADHD. He has a son with autism, but you wouldn’t know it from meeting them. They’re a lovely young man, incredibly intelligent and highly sociable, none of the hallmarks of what autism meant to me. I thought I’d already seen the full breadth of that spectrum: my brother Bob was “high functioning”, a little odd but really no different to any other slightly eccentric person; another, the son of an old family friend, more severe, able to talk but still noticeably behind; and an older gentleman who I looked after while I was a care worker, completely stunted, unable to speak, who wore nappies and whose bedroom floor and walls you’d need to clean every morning. My cousin, on the other hand, was unlike any of them, offering profound insights just as readily as small talk. If you can be that captivating, and still have autism, then maybe I’d be happy to have it.
It sure would make sense of a lot of things, like how I never really “got” how to be social in the correct way. Or how I had to learn about human behaviours very slowly, manually researching the aspects of interaction that everyone else had already picked up automatically. And how I’d always accept things people tell me as being factually valid, and how being in certain noisy and busy situations can feel like I’m drowning.
Because even for all my differences, they could never account for the full array of difficulties I’ve faced. But with autism considered, the remainders of the vast assortment of things I’ve struggled with would finally have an explanation. If I can understand my limitations better — i.e., how the things I’m capable of have a hard cap — then I can start to forgive myself for not being able to do them, and perhaps find solace in the discovery of others who, like me, have faced similar invisible challenges.
~
Back in Mum’s bedroom, I’m shaking and crying, and my Tourettes is in overdrive. The explanation Mum gives me makes perfect sense though: I’d just spent several days, away at that manor, having to repress my tics, and now that pressure had boiled over uncontrollably. She puts a pillow on the end of the bed and tells me to hit it, to relieve myself of some of the tension. I don’t want to — I’m not a violent person and the idea was repulsive to me — but I gave it a go anyway. The thought was good, she was trying to help me, and I was always appreciative of the support she’d give.
There was only once, that early on, when I wondered what the purpose of her efforts was. Every couple of weeks she’d take me horse riding — “disabled horse riding”, she called it, but that was just a name, which I paid little attention to. But this time was different. Instead of cantering, I was sat on a horse going in a slow circle. As we arrived, I’d seen someone doing the same, but they really looked disabled, whereas I didn’t think of myself as being anything close to that. The activities she’d arrange for me, I never thought of them as being related to how I was, but this moment made me question her influence on my own perception of who I am. If this is how she sees me, how should see myself? Should I be behaving more like the person I saw on the horse?
I certainly didn’t feel that much different to anyone else, not that far back anyway. But you become what you’re told you are, and I was told, over and over, that I was disabled. Eventually I began to tell this to other people too, though not to the degree that Bob did. For me it was purely a label, almost arbitrary in its meaning. The one and only time that I said I couldn’t do something due to my differences, Mum shouted at me and told me not to be so selfish — although that was much later, after cruelty had become her default mode of operation, with that moment being no different to how she usually interacted with me.
But for Bob, you could see the effect it was having on him. She’d announce that “Bob can’t do X because he’s autistic” — he can’t communicate, can’t express himself, can’t understand things — then Bob would repeat that exact same thing later, to us at home, to people outside, to anyone who’d give him a moment of their time. Personally I thought he was fine, but I also had no reason to doubt what our Mum had said. Why would she keep telling us that if it wasn’t true?
It was nice of her though, taking me to kayaking lessons on the River Thames, or to the gym; first the one near our house, then the one next to a big supermarket, where we’d get to park in the disabled spot, as she had badges for both me and Bob. Our disabilities had other advantages too, like getting to skip the queues at theme parks, and all we had to do was, in her words, “act disabled” as we collected our passes.
Bob struggled with that at first. The very first time, when someone from the council had come to our house, he locked himself in the downstairs bathroom with Emma, crying and saying “I don’t know how to act disabled”. I wasn’t sure either, but I always gave it my best shot. My characters were either overly hyper, which came easily to me, or vacant, like I thought that girl on the horse was. The people behind the counters at the theme parks didn’t seem to notice either way, but I knew it was important to follow her instructions.
I didn’t enjoy those activates really, they were really just things I had to do, but she was still putting in a lot of effort into finding ways to accommodate my disabilities. I was certainly appreciative of the man who would take me into town, where I’d buy Simpsons comics from Blackwell Bookshop. And it was kayaking, actually, in the changing rooms, when I first saw another man’s willy! Just a random person getting dressed back into their everyday clothes, but that moment stayed with me. It broke a convention that I’d accepted as part of the rules I should follow, from years of putting on my trunks behind towels at the seaside, or in private cubicles at the swimming pool. So I did the same, getting dressed while trying not to worry about who saw my own willy. It felt liberating, but a little scary too.
Of course, I’d already seen Mum naked, she went without clothes on a lot. Those evenings when I’d go into her bedroom to chat with her, a great deal of effort was spent on my part trying to avoid looking at her boobs and private parts as she lay nude in bed. It was difficult and uncomfortable for me, and because of how my mind is, would only become more torturous as I fought against myself. But was just part of our chats, the price I’d pay for her insights.
But one thing that struck me as being very out of place was after she’d moved downstairs, when she showed me what she does with needles, as part of the current fetish scene she was into. We already knew about most of that, since for many years prior, sex was one of the only things she’d talk about, along with dogs. But whereas before when I’d listen attentively, genuinely intrigued to learn more about how people behave, that moment made me feel deeply uncomfortable on every level, and I wasn’t sure what the point of it was.
I asked her about it, some time later, over a text message. She replied by saying “and why do you think I did that?”. The younger versions of me, still eager to follow instructions and snap up any chances for further illumination, would have answered. But by that point I’d become wiser, knowing how much centered around her ego. I understood what she was trying to do: Get me to explain her own actions for her. If she liked my conclusion, she would keep it; otherwise, it would at least give her more data with which to determine a better response, informing her of my feelings before she had to judge the best forms of attack and defence against them.
As hard as I would work to rid myself of the most painful memories she’d inflicted upon me, I was careful never to lose my understanding of the manipulative tactics she’d employ. Of course, I hadn’t reached the peak of my comprehension yet — that would come many years later, after the Oracle incident — but I knew enough to see through her attempt to ensnare me. I chose not to reply, my curiosity overridden with the good sense not to walk into another unbearably familiar trap.