My Lived Experience

It’s strange when someone asks me to talk about ‘my experience of autism’ because for me that’s as odd as being asked what my experience is of having blue eyes. And I find that what people mean when they ask me to talk about this is actually ‘what does it feel like to be an outsider’ which is so weighted a question it inevitably leads to me talking about the negative things in my life because the assumption is that autism=negative when to be honest that’s not been my experience at all.

That’s not to say I have no struggles, that’s not to say I’m not an outsider – my entire life I’ve been very aware that that’s exactly what I am. I have experienced bullying and prejudice and misunderstanding from people negatively reacting to my autistic differences (whether or not they knew that’s what they were picking up on). But I do get a bit fed up with having to always frame things in a negative light and I also don’t like the way people expect me to single out what ‘parts’ of me are the ‘autistic parts’ because quite frankly the autistic parts of me are every single part of me, same as how the pansexual and non-binary parts of me cannot be separated from the rest. Asking me to define what is and isn’t ‘the autism’ is like asking me to tell you whether or not I have a soul and if so, where it’s located – I simply can’t do that, because that’s honestly not how it works.

I know some people don’t see it that way, even some autistic people. Some people wish they weren’t autistic, and I think that’s sad because it’s the same as wishing you didn’t exist at all, because without ‘the autism’ there is no you – you can’t swap out a brain and be the same person.

It’s frustrating when I have these conversations with people who talk about wanting ‘a cure’ because so often I get accused of ‘clearly not struggling’ or not being ‘severe’. And frankly those are stupid accusations. I will be the first to acknowledge I am lucky, but I’m not lucky because I’m someone’s vague definition of ‘not severe’ (whatever that’s supposed to mean), I’m lucky because I have a family who have always accepted and supported me, never questioned my needs just acknowledged them as valid and helped me find a way to meet them, even when they didn’t understand them or share them. I’m lucky because my mum taught me at home for eleven years and when I went to school my teachers were out-of-the-box thinkers who encouraged me to learn in ways that worked best for me. I’m lucky because I’ve always been surrounded by people who allowed me to be strange and who encouraged me to pursue my passions. I’m lucky because class sizes at my school were tiny and that although I was bullied my early experience of love and acceptance meant my self-esteem was able to take the battering without being destroyed. I’m lucky because I went to a Uni I liked and I got a good degree. I’m lucky because I was able to get disability benefits when my anxiety got so bad I couldn’t work a full time job. I’m lucky because my parents own their own home and I was able to keep living with them, able to have pets, to have a garden, to prioritise my mental health over a struggle to scrape by.

I’m lucky because I’m able to focus on my writing which helps keep me from spiralling downwards, I’m lucky that my parents know a lot about mental health issues and are able to give me support and advice. I’m lucky because half my family are also artists and story-weavers who I can discuss and debate with and ask for feedback from.

I am a very lucky person. But it’s not because I’m not ‘severe’, had I not had all this support, all this love, all this acceptance, I don’t know what I would be like. When I get very anxious I can’t speak, when I get too hungry I can’t think and my words slur, my temper used to be on a hair trigger and at school I hit people. The one time my parents let my grandparents mind me as a toddler they didn’t pay enough attention to me and I ended up scribbling all over the walls with a pen- I never did that when my parents were with me.

At any point in my life I had the potential to be labelled ‘bad’ I had the potential to end up with ‘behavioural issues’. If I’d had a different family, a different life, I might well have ended up in prison by now, or in a psychiatric hospital, I might well never have got through school, I probably wouldn’t have gone to Uni and I certainly wouldn’t be able to work on my art and my writing. I might still not be able to talk to strangers, I might never have got past my panicked response to unexpected changes and I can fully imagine I would be utterly miserable, and possibly have killed myself by now.

When people accuse me of being ‘mildly affected’ by autism they are mistaking the impact of a lifetime of family support, financial support, a good education, good self-esteem, self-acceptance, and the time and space to focus on managing my mental health needs, with ‘not really struggling’. In a way they’re right, because I do struggle far less than other people. But that’s not a simple case of me being ‘mild’, autism is in my flesh and blood, it’s in my bones, it is me, I can’t be mildly me. But I can be a me that isn’t struggling to stay afloat every day of my life. I am lucky to be a version of myself who has been encouraged to love themselves, accept themselves, whose needs have been met more than they haven’t been met. But a lot of other autistic people never get to have all of that, so is it any wonder we don’t seem the same?

I still lose the ability to speak when stressed, if I get too tired or too hungry I can’t think properly, I struggle with names and faces, I find it hard to chip in to conversations…there’s a long list of what I struggle with, but my ‘autistic-ness’ shouldn’t have to be proven by listing them. My point is that I know for certain that if I did not have the support and the love and the sense of self that I do, I would appear very differently and be able to do a hell of a lot less than I do now. So quite frankly I’m sick of autism being viewed in terms of what we can’t do when so very often what we can’t do amounts to what we’re not being allowed to do.

At a time when the normal shape of the world has been turned inside out, ‘normal’ people are realising that their needs not being met by default causes them serious problems. That when their financial, social, physical, and mental health needs are not met means they struggle to do the things they want and have to do. For us, and for so many people who fall outside the ‘norm’ whether that’s because we’re autistic, disabled, mentally ill, homeless, non-white, queer, trans, poor, and so many other outsider experiences…our needs not being met by default by society impacts our ability to live healthy and fulfilling lives as part of society. What people have experienced during lockdown is in many cases similar to our every day experience- when you know there’s a whole world out there but for a number of reasons you’re simply not able to access it.

So, I guess the point I’m making is that we need to stop seeing autism as a detriment, as a sign of something missing or of having ‘more needs’ than other people. We can’t keeps seeing it as a negative, a tragedy, a loss, or a list of things we can’t do, because that’s not what it is. And I say that not as someone who ‘doesn’t struggle’ but as someone who knows that we shouldn’t have to struggle. I say it as someone who knows that even under the best circumstances existence can still be difficult, but please consider this – whose life is ever without difficulty? There is no perfect way of being human, we all have limitations and abilities and they’re infinitely varied. And there’s no reason we shouldn’t feel frustrated by them sometimes, we’re allowed to feel that. But where needs can be met, and where limits can be worked around – there’s no reason that our differences, and our needs should be things that exclude us or used an excuse to pity or despise us.

To put it simply – my experience of autism is that I am autistic, I exist, I like myself, my friends, my family and my life. I have my struggles and maybe one day if the world doesn’t change for the better, those struggles will overcome me, but knowing that doesn’t mean I like myself any less, it doesn’t mean I don’t enjoy the beauty and laughter of my life as it happens. I have had so many adventures and met some amazing people. And maybe another time someone asks me what it’s like being autistic I’ll simply grin and tell them random stories instead.

Like how I spent a night with homeless punks in a derelict bank, how we crammed together on a broken sofa to watch ‘Spirited Away’ on a tiny tablet balanced on a flimsy garden table. I’d tell them about meeting another autistic queer on a protest and going on a bizarre quest around London to find a plug socket to charge his phone. How we ended up going out for tea together and telling each other our life stories, feeling like we’d known each other for years even though we’d only met hours ago. And I’d tell of trading my artwork at comicons, knowing there would have been a time where the idea of me doing so was laughable, and finding myself grinning at the young autistic kids who come bouncing up to my stall to buy keyrings that say ‘autistic, eccentric and awesome’ and feeling a deep sense of hope for the future, because I know they believe those words.

By Lizzie

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