What it's like to grow up autistic

This is not a letter to Kemi Badenoch

Hello,

There are references to self harm and suicidal ideation in this letter; it that feels too much for you today, or always, you probably already understand what I’m saying anyway. Feel free to skip.

Earlier this week, the prospective Conservative leader, Kemi Badenoch, issued a campaign pamphlet identifying factors impeding economic growth. One of them was autism - or rather, the excessive demands that autistic people are supposedly making on the state and employers. According to the pamphlet, autism has gone from ‘something that people should work on themselves as individuals’ to ‘something that society, schools and employers should have to adapt around’. It also claimed that autistic people got ‘better treatment’ including extra equipment and transport to school, and ‘economic privileges and protections.’

It is traditional, in moments like this, to address an open letter to Ms Badenoch herself, trying to persuade her that her ideas are wrong. I’m not going to do that, partly because Badenoch evidently thrills in her cruelty (she’s clearly got bored with attacking asylum seekers and is looking for a new quarry), and partly because there are already excellent responses available, for example from the National Autistic Society and John Harris in the Guardian, outlining the struggle, suffering and entrenched disadvantage experienced by autistic people in this country.

Instead, I want to write to anyone who thinks she might just be right; to explain, in the simplest terms possible, what it’s like to grow up autistic without any support or adjustment. I’ve written in detail about my own experience in The Electricity of Every Living Thing, but here I want to put it in the simplest terms. 

Even though I showed an array of the outward signs that would now get me a childhood diagnosis of autism, that wasn’t available when I was growing up, because it was thought that either girls couldn’t be autistic, or that it was extremely rare. However, I knew, from a very early age, that I was different to the other children, and that adults found me distasteful. I was not invited to parties or play dates, and several times I overhead parents in the playground saying I was weird. I couldn’t ever seem to make friends, and felt incredibly lonely. I was bullied and excluded. By the time I was eight or nine, I believed that I was an alien, an anomaly, and that I didn’t deserve to be alive. 

This is me, aged two. I was also extremely cute.

My first suicidal thoughts came in primary school. When I was 12, I began to self harm, regularly scratching and cutting my arms. Soon, I developed anorexia too - anything to punish this body that was always so wrong, to try to release the intense pain I was feeling, to vanish. I believed that at some point, when I figured it out, I would take my own life. I had no plan for adulthood at all; I didn’t think I needed to choose a career because I didn’t expect to be there. 

Earlier in my life, I experienced extreme sensory discomfort at noise, bright light, smell and textures, particularly clothing. Although my family often adapted to help me, no-one understood that this was part of my neurology, and I quickly absorbed the idea that I was wrong about this, and I had to suppress my sensing and the feelings that arose from it. Over time, this became a mask that I couldn’t shift even when my whole body was screaming. This exhausted me beyond all measure. When I was 14, I was diagnosed with ME (after a lot of medical gaslighting), and for two years I attended school only sporadically. It’s funny how that’s what I divert to telling you about it - that it made me miss a lot of school. That’s how I’ve been trained to think about it; disengaged from my own experience. I was actually in pain, too tired to think, completely isolated, and afraid of what would become of me. (Incidentally, I would now understand that period as a combination of autistic burnout, and pain from my hypermobility condition, which is common in autistic people, but neither of those explanations were available to me at the time.)

The disassociation from my bodily discomfort led to other problems, too. I find it hard to express pain, mental or physical, and so I struggle to access medical help. I drank heavily from my teens onward to stay as numb as possible. I put myself into dangerous situations and froze at unwanted sexual contact rather than fighting back. I saw myself as fundamentally degraded anyway. This training in ignoring my body’s messages was traumatic, and it put me in harm’s way. 

When I was 17, I had a breakdown - catastrophic depression and anxiety that again kept me out of school for months. There it is again: that tendency to share the external, economic effect rather than my experience. I thought I was going to die. I thought this was it. I thought I couldn’t manage to live in this world anymore. But I pulled through - found a strange survival instinct from hitting rock bottom, talked myself back onto a level. I changed, but only by building a more effective mask rather than ever imagining I could be myself. I didn’t get any psychological help because I couldn’t talk, and so the psychiatrist discharged me. 

But also, I got straight As in my GCSEs and A Levels, won a place at Cambridge despite being a deeply unhappy kid on free school meals. I am not saying this to brag; I am saying it to show you what I could do, despite it all. Badenoch and her ilk always want to say that we’re simultaneously undeserving of resources and a waste of space. I was neither. I just quietly suffered, and quietly achieved. It was not the same as thriving, but when I look back to that period, it is proof of life. I realise that not everyone has that, and that I’m lucky I do. 

But even with those artefacts of success, I struggled. Without the support I needed to make the transition (which was as much about being working class as it was being autistic), I couldn’t make sense of university, its systems and its social life. For the first time in my life, I underachieved, falling back on my learned pattern of skipping lectures and doing the bare minimum to scrape by. I got a 2:1, and was admonished by my Director of Studies, who knew I was capable of far more. On leaving, I spiralled downwards, quitting my graduate job in branding after a few months (God only knows what I thought I was doing there in the first place, but then I had no plan), and spending a year drifting about the house, taking the occasional temp job. 

Eventually, I decided to train to be a teacher, but that made my insecurities rage - how could I, so unlikeable, ever presume to try to charm a class into learning? After 18 months, the same symptoms came back from my teens: pain, exhaustion, brain fog. I started taking a lot of time off sick. This time, I was diagnosed with Fibromyalgia. ‘It means we don’t know what’s wrong with you,’ said my doctor. Ashamed, I quit my job, and went into drift again. 

That’s when I started writing. I had a lot of time to fill. But also, I began to work freelance, combining my knowledge of teaching with my creative practice, working for museums and art galleries, and later in schools again. I loved that phase of my work. Looking back, it combined short bursts of social effort with a lot of time at home, working alone. It suited me, and I was good at it. My confidence grew. 

And then, it all came crashing down again. This time, a panic disorder, brought on by moving house. Extracting myself was a costly business, and I lost a lot of friendships at that time too, such was my terror and paranoia. Remember that I still didn’t have any knowledge of my autism at this point. I just thought that I was a chronically broken person who couldn’t ever manage the most normal life events. The self-harm came back. The disordered eating never really stopped anyway. I didn’t even bother seeking help this time, because I didn’t trust the system.

Pregnancy. Nothing about my physical experience matched what other mothers were saying. Another bout of vile depression and panic. More alienation, and now the difficulty in getting back to the work I loved because I couldn’t afford childcare. But then, when Bert was three, the realisation came that I’m autistic, and everything changed for me. It didn’t make my life perfect. It didn’t magically heal me of all that had come before. But I could make sense of myself, see myself in the context of other people like me, find a community and better explain my experience.

I could write a lot more, but I think I’ve said enough. What I have realised in the time since then is that life goes much better for me when I can understand my needs, take them seriously and adapt to meet them. It’s not always as simple as that, partly because of the trauma I carry, but most of the time, I can make things a lot better for myself. The things I need are relatively small: to be allowed to avoid environments that cause me sensory harm, to plan rest and quiet into my days, to be allowed to go with the ebb and flow of my energy. That might mean taking a taxi instead of a packed bus, or taking breaks in days that entail a lot of social interaction. I don’t honestly think that’s too much to ask. Trust me, I draw on more resources when my needs are not met. But I hate the ‘burden on society’ argument anyway; it is a shameful way to understand humanity. 

I don’t particularly like laying out the facts of my life in these blunt terms. I am a writer, and I prefer to create poetry. But it is necessary, and so I am doing it today. I would invite you to read what I’ve written, and to see the thing that I struggled to see for the longest time - that this is an account of suffering. Those of us who have been through it, and anyone with any heart who witnesses it, want to prevent this in the next generation. That means making small adaptations for equal and valued members of our society to live as they need to. We know how to do better. That is all. 

Yours, still here,

Katherine