This week is World Autism Acceptance Week, and acceptance is something we are still fighting for, so I wanted to share some of my own thoughts and experiences as a late-diagnosed autistic woman. Whilst I am touching on mainly negative experiences, I want to clarify before I begin that A) I do not view being autistic negatively B) I am proud to be autistic and C) Autism is never the problem. Ableism is.
[Trigger warnings for: brief mentions of mental health problems, self harm, suicide, binge drinking, sexual assault, and bullying]
I got my autism diagnosis at the age of 30, after a lifetime of not understanding why I struggled so much with things that other people found easy. I never believed that I was good enough, I just thought I was a rubbish, useless person who wasn’t trying hard enough to be ‘normal.’ I could never live up to society’s expectations of me, and felt like I was failing at life. I hated myself SO MUCH.
I experienced severe bullying at school, and struggled with anxiety, depression, a suicide attempt, OCD, and an eating disorder. Most of my mental health problems were not diagnosed until adulthood, so I spent many years feeling like a fraud and not getting the support I needed from mental health services. I was constantly overwhelmed and exhausted at school, and had letters sent home about my attendance because fatigue led to too many sick days. I would fabricate reasons for being off school – usually saying I had a cold/flu bug – because I could never have articulated what was *really* wrong and been taken seriously.
At university, I struggled with burnout less, because my course had fewer teaching hours, so I got to spend a lot of time alone reading in my room. I was studying a subject that was a ‘special interest’ of mine (literature!), so it made me happy, and contributed positively to my mental wellbeing. However, a huge part of university culture is going out and socialising, and I wanted to fit in and make friends, so I would regularly drink excessively to the point of complete memory blackout in order to make myself feel more comfortable going to nightclubs, and being around large groups of people. On several occasions in my first year of studying, my nights out ended in situations I would now classify as non-consensual, after years of doubting and blaming myself.
All through my adult life, I have struggled to hold down a full time job, and have left every single ‘grown up’ job I have ever had without another to go into because of burn out, extreme anxiety, and depression. In one of my jobs I even experienced mental health discrimination, workplace bullying, and gaslighting, which in turn brought back all of the trauma from the bullying I experienced at school.
All my life, I’ve been asking myself: What is wrong with me? Why can’t I cope with anything? Why am I so vulnerable to bullying and exploitation? How can I change myself so that I will finally be acceptable? How can I become ‘normal’?
It is only since my autism diagnosis that I’ve realised that I am not a problem that needs to be ‘fixed’. I do not need to change who I am, because there is nothing wrong with me. I have experienced so much distress (and still do) because I have to live in a society that is not designed for autistic people and their needs, and which does not offer me the support I need to thrive. Every sphere of life, be it school, university, or the workplace is built by neurotypical people, for neurotypical people. Even standard initial help for mental health problems (CBT) does not take autistic differences into account. And the worst part is not even that we cannot change those environments to better meet our needs, but that people often do not understand and accept us when we inevitably struggle with them. They expect us to hide our distress and force ourselves into inaccessible spaces, and they make us feel bad about ourselves if we’re unable to do so. This is ableism.
We are not the ones who need to change. It is our ableist society which needs to change, to accommodate and accept autistic people. To stop expecting us to bend over backwards to live up to the norms of neurotypical people, destroying our mental health in the process. To listen to us when we are in distress. To believe us.
Often behaviours that are seen by neurotypical people as ‘problems’ that need ‘correcting’ are actually signs that the autistic person’s needs are not being met, that they are in distress. But sadly society’s answer is nearly always to try to ‘fix’ a behaviour that makes neurotypical people uncomfortable, rather than questioning whether this might be happening because the autistic person themselves is uncomfortable and finding a way to make them feel at ease.
Listening to autistic people is extremely important if you want to try and understand the autistic experience. And remember that not all autistic communication is verbal: non verbal autistic people have alternative ways of communicating and deserve be to listened to just as much as verbal autistic people.
Until diagnosis and becoming a part of the Autistic community on Twitter, I had never realised how much ableism autistic people face from the world, from organisations that want to ‘cure’ us, or give us ‘interventions’ as children, from problematic researchers who want to study our DNA and make pre-birth screening for autism possible in the future… even from everyday people we meet, who don’t understand – think we are being dramatic, too sensitive, making it up, lazy, not trying hard enough to function ‘normally’.
I can’t explain how invalidating it is not to be believed about your experiences. Autism is an ‘invisible disability’ meaning that nobody ‘looks autistic’, but a big part of the autistic experience is ‘masking’ (suppressing our autistic traits to make other people feel more comfortable), and because some of us are very good at masking, we might not ‘seem autistic’ either. We might not behave how you imagine an autistic person would stereotypically behave.
On multiple occasions I’ve had people say things like this to me: “You don’t seem autistic.” “If I were you I just wouldn’t tell anyone, because I never would have guessed.” “You’re only a little bit autistic, right?” “I always thought you were normal.” “Your autism is not severe.”
First of all, there is no such thing as ‘a little bit autistic’. People are either autistic, or they are not autistic. To be diagnosed with autism, you have to have every single trait on the list of diagnostic criteria. Every autistic person is different, and every autistic person will experience each of their autistic traits to varying degrees. That’s why it’s called the autism spectrum. This also means that every autistic person will struggle with different things to different degrees. Just because an autistic person is verbal, and isn’t having big meltdowns in public, doesn’t mean that their struggles are not real – they are just not visible to you.
Amongst many other traits, autistic people have sensory difficulties (meaning we may become overwhelmed by lots of sensory input – loud noises, big crowds, bright lights, strong smells) and social difficulties (meaning that social situations can be anxiety-inducing and exhausting for us). If you combine those two things, it is often a recipe for a complete emotional meltdown, and I am susceptible to these if I have had a long day filled with these things. When I get back to the safety of home, one more thing will tip me over the edge, and I will be rocking and sobbing uncontrollably for an hour, engaging in self damaging behaviours such as compulsively pulling my hair out/pulling my skin off. If everybody could see what happens behind closed doors, I can guarantee they would not question that I am autistic. Because people only seem to recognise autistic people when our distress is extremely visible (although sometimes, not even then.)
Despite the things I struggle with, I am learning to recognise that my struggles are not my fault, and that if our society truly understood and accommodated autism then I would not experience so much distress. I wouldn’t have as many of these kinds of meltdowns. If it wasn’t considered weird/abnormal for me to:
– be quiet sometimes – say no sometimes – for me not to make eye contact when I’m talking to someone – to give myself as much space and recovery time as I need between social interactions – to avoid loud, crowded spaces – to stim when I need to (stimulatory behaviours like rocking, tapping, flapping hands, etc. which help with processing emotions and sensory input) – or to let myself engage in the things that bring me joy/soothe me that other people might find odd (e.g. taking my plushies out in public)
… then maybe, just maybe, I would thrive.
Remember, also, that autism is viewed negatively because it is seen as ‘abnormal’ when compared to what the majority of people experience, rather than being viewed through the more neutral lens of simply being ‘a different way of experiencing the world’. If society accepted and celebrated people’s differences, autism would not be seen pejoratively by so many people (please, let’s stop viewing disability pejoratively anyway, if we do not have a lived experience of it ourselves.)
If society stopped telling us that there was something wrong with us, maybe our self esteem would be better, and we wouldn’t have so many co-morbid mental health problems. If society stopped asking us to ‘get better’ from something that is not an illness, and that we literally cannot change because it is in our neurological makeup, maybe we would feel more at ease, be kinder to ourselves. Maybe we could stop trying to force ourselves to fit into round holes, when it’s actually completely okay for us to be the magnificent square pegs that we are. Maybe we would thrive and be happy. If we were allowed to simply be ourselves, what a world of difference that would make.
I accept my autistic self fully, and I wouldn’t change myself for the world. But I am waiting on the world to change, to wake up and accept me for who I am too.