Too often I get told that I don’t look autistic. But what does autistic look like?
Even with the focus shifting to supporting those who are neurodivergent and trying to understand their needs, there seems to still be a misconception that a young male who doesn’t communicate well is the measure of autism. Or at least that’s been my experience.
There is a trend on social media based on this misconception of what an autistic individual looks like, often where creators share things that the outside world wouldn’t normally see. For example, flappy hands, spinning, special interests (I have a very robust crystal collection… I like pretty rocks. And planes!), obsessive behaviours, restrictive eating, sensory issues and even meltdowns.
While a fun trend to participate in to make light of the situation, I believe this just highlights the misunderstanding society still has of autism and how it affects each individual.
My entire life I have been misunderstood and made to feel like a square that doesn’t fit into the round hole.
The way my autism affects me won’t be the way it affects another individual. I thrive with routine and structure, I like systems and processes, I have an incredibly strong sense of justice, I don’t waive from the rules, and I can’t lie to save my life because my face doesn’t get the memo. The saying ‘if I don’t say it my face will’ comes to mind, but to be honest my face is completely independent to the rest of my body, so I have absolutely no idea what it’s telling anyone!
As a child I didn’t know how to play, my mind cannot do imaginary things and even now as an adult I absolutely despise having to do any form of role play and find it very difficult to display expected behaviours in an environment where my unmasked self would not be accepted.
I need to be selective with who I unmask around. That really shouldn’t be the case, but I have learned the hard way that the world just does not accept me as I am.
My diagnosis came after my PTSD therapist suggested for me to be assessed. She was the first person who recognised that I was struggling in life due to being autistic. It took a mental breakdown for someone to help me. My entire nervous system was shot, to the point my body was shaking for weeks. Not just a little tremor here and there, my body continuously shook for weeks. At 28 years old, I was told that the reason I couldn’t cope with life was because I was likely autistic.
I didn’t believe the therapist to begin with, and she didn’t push it any further, just said that it was something I should consider.
My eldest son, however, was offered an autism assessment at 2 years old. He didn’t play (like me), he didn’t make eye contact (like me), he was hyper-verbal with non-verbal episodes (like me), he lined up his toys in order (like me), he hated physical touch (like me), he had intense interest in 1 thing at a time (like me) and he couldn’t cope with change in routines (like me). At one point we were urgently referred to the hearing clinic because pre-school thought he was deaf! He was not, he was just so overwhelmed in that environment that he shut down and became non-verbal. He was displaying all the typical signs the health visitors would look out for and was offered the assessment.
We did not accept the offer of the assessment for him. There are 2 reasons for that. Number 1 is that we were young and naive (my PTSD therapy didn’t start until he was 5 so we did not know I was autistic at this point), and we listened to people around us who said he was normal, that we shouldn’t label him and that he’s just like me. Which brings me on to reason number 2. He was presenting EXACTLY as I did as a child. We didn’t recognise the signs of him being autistic because he was behaving the way I did as a child, and at this point we had no idea that I was autistic.
The point I am trying to make here is that a young male presenting with the same traits as a young female is more likely to be identified as being autistic than the female. It was identified that my son was autistic for displaying the signs/symptoms. But for me, this wasn’t even a consideration. A female presenting in the same way is likely to be labelled as shy, rude, stubborn, anxious, anything except autistic.
If a young male and a young female are presenting the same way and we are basing autism off what autism looks like externally, why is it that females are still not being put forward for autism assessments as much as males?
We are at a point where more females are being identified as autistic, but this is still at a much lower rate than males. The way autism is measured is still tailored more towards the male presentation of autism and does not consider that autistic females can be better at masking and positive niche construction.
We need to stop thinking that autism is one size fits all. How autism affects me isn’t necessarily how it will affect someone else.
It used to feel invalidating when someone said, ‘you don’t look autistic’. My answer now is just that I am masked around that person.
I do wonder though if there would be more of an impact if my answer to them was acting out my version of the social media trend. Would I then look autistic? If I started flapping my arms in excitement, making my vocal stims, having a meltdown over the wrong spoon or showing them my collection of pretty rocks.
Autism is not a one size fits all diagnosis, and I hope in the future society will realise this.