No one had any inkling that I was autistic. I didn’t have a clue either, until a period of increasing anxiety and depression in my early 30s had me researching potential causes, and I read up on the topic of ‘Autistic Spectrum Disorder’. I completed a few online tests, saw my GP, got referred and within four months I had been diagnosed with Asperger’s Syndrome (a form of autism). Family were surprised, friends shocked… until I told them about the common traits of autistic people, such as social discomfort, sensory issues, strong esoteric interests, at which point they all looked thoughtful and responded with a simple “oh, well actually that makes a lot of sense.”
None of us knew anything at all about autism, you see. My family had never really come across it; my friends and I were unfamiliar with the condition (apart from what a few of us had gleaned from The Curious Incident of the Dog in the Night-time). School teachers in the 1990s were always very happy with my work, only occasionally commenting that I was ‘quiet’ or ‘preoccupied’. ‘Autism’ was a word we knew of, but a world we knew nothing about. Once I had outlined the tendencies and traits of autistic people, my friends and family were all united in realising it should have been obvious all along. If only it had been picked up earlier in life…
It is Autism Awareness Week as I write this, my first since diagnosis last November. A week dedicated to spreading awareness of Autism and its aspects and effect on people and families, a week of various organisations, schools, businesses proclaiming and dressing in pink and purple, all to raise awareness of the existence of this quietly pervasive neuro-type. But how much do the non-autistic community learn about autism during this yearly event? How many #ActuallyAutistic voices do they hear from? How many people living with autism are still unaware of their condition, desperately trying to fit into a world that makes little sense to them? One thing that became immediately clear to me on immersing myself into the autistic community online was that Autism Awareness Week was a source of great unhappiness for a large number of autistic folks. There is a general sense that the event is poorly managed, poorly communicated and a victim of desperately low expectations.
The biggest problem is one of representation. There simply aren’t enough autistic voices elevated to speak and share their experiences on a national scale. The National Autistic Society work hard to allow the #ActuallyAutistic a chance to speak and share their views, but this is a minority effort and its reach is limited. On the ground, within schools and businesses, the week is too often simply a reminder that autism exists: people wear pink or purple (the colour-scheme of the National Autistic Society), and are aware of the label a little more than usual, but they learn nothing of what autism actually is, and what it’s like to live as an autistic person, let alone as an autistic adult.
And this has repercussions. Firstly, it means that there are many adults out there who are struggling on a daily basis but have no idea why, no idea that there is a valid reason for their feelings, fears and phobias. They may have heard of autism, but they have no knowledge of the associated behaviours and traits, and so do not get diagnosed. A further, more unpleasant effect of this lack of genuine understanding is the continued pressure on autistic people to act normal at all costs. In order to hold down a job, maintain relationships, have friends, autistic people are often forced to hide the most obvious aspects of their neuro-divergence behind a mask, pretending to be calm and accomplished in busy social situations, in the role of a parent, in the role of a friend. They cannot let that mask slip, as this would cause people with no knowledge of autism to be dreadfully offended – why aren’t you looking me in the eye? Why don’t you want to come to the gig? Why? This drains us of our energy and can often lead to total burnout, breakdown, or even suicide, often in middle-age after a lifetime of pretending. How can this be permitted to continue?
There needs to be a change; there needs to be a cultural shift of understanding. If Autism Awareness is to mean anything in 2019, let’s make it more about Autism Acceptance.
My own blog has more information about living with autism, as does the excellent homepage of the National Autistic Society.