The Problem Was Never Me

By Meg Hopkins

Nobody noticed. Someone, a teacher or a parent, should have realised earlier – that my brain worked differently. But it took till twenty and an autistic friend (isn’t it funny how we all find each other without even trying) to realise that I wasn’t the problem. It’s been two years now, since my diagnosis, and my relationship with myself and the world has changed in ways I never imagined. Before I was too loud or too quiet, always shrinking myself down to avoid unintentional mistakes that no one would let me off the hook for. The problem was me and I hoped it was a phase; something to grow out one day, as if I would just wake up and become a shiny person able to float through the world. No need to calculate my tone or accent, to analyse what the best response would be and how to make it seem authentic, no need to work out what exactly is meant by a remark. My mind would be quiet and my own, not concerned with the inner working of everyone around me and their relationships to each other.

Now I know that the problem is external. It is a society that expects autistic people to pretend to be anything but autistic – except where it could help them profit (silicon valley I’m looking at you). It’s a world that simultaneously vilifies and infantilises us – or, especially if we’re women, erases us completely. When I think of my autistic friends they’re nothing like the parodies of us in the media. There is so much the goodness in them; the way they can effuse on their interests, their brightness and senses of self, their identities outlined in multicolour eyeliner and the way they make me feel I can be my self. But there’s a darkness too but blink and you might miss it. Undoubtedly, it’s there. It’s the way we have to fight all that we have internalised, the bullying and the exclusion. The problem may be external but that doesn’t mean I can float just yet.

When I was diagnosed, I was angry. I had been denied my identity because I didn’t present as some autistic boys did almost a century ago and I had to hide myself for fear of being rejected by the people who should have held me close. I mourn for that autistic child, overwhelmed and confused by a world that did not hold a space for me. Maybe if I had worse grades or liked trains they wouldn’t have noticed that I wasn’t just shy, that the pit in my stomach in school, the panic attacks and sitting alone by the wall were all signs that I needed something I wasn’t getting. What I needed most of all, what I think that we all need is to be accepted. Understood too. The feeling of meeting my autistic friend for the first time, the way that I felt reflected, as if everything did just flow, that sheer understanding that joined us together is a feeling I will treasure for ever. But not everyone can understand why I need to do things on schedule or how I can get trapped in the dreaded waiting mode. For what it’s worth I don’t understand why allistic people do a lot of things. I just accept that they do. Even if we can’t understand one another, we need to accept each other and make space for needs – whatever they may be.

I couldn’t imagine liking myself two years ago. Part of me wished I wasn’t autistic. I mourned for all that I could have been if only I was born some other way. I don’t feel any of that now. I love being autistic, it is the scaffolding which structures all of my being. I cherish my neurodivergent my friends and how the understanding of having a minority mind ties us together. I can view my past self with kindness, even when she made mistakes. I’ve come to fear telling people that I’m autistic, preempting some probably well-intended but undoubtedly still offensive comment, like the time at a job interview I was told ‘you don’t seem autistic, you’re not like the people on TV, you’re normal’ (being told I don’t look autistic is still on my bingo card but I’m sure it’ll happen). Being someone’s first autistic person is a big job and, frankly, I don’t always want to do it. Being autistic, in my opinion, isn’t a superpower – I find that patronising. But it’s not a bad thing either. It’s just a thing. A mere difference. What’s disabling is living in a society that makes no allowances for that mere difference. It’s a punitive system and I’m exhausted by it. Autistic people deserve better. And if you’ve seen the depression and anxiety rates, our life expectancies and the suicide rates you’ll know we need better. And fast.