This is the first in a series of weekly blogs on Autism Acceptance in honour of Autism Awareness month, which is April.
As you may or may not know, April is Autism Awareness Month, and today, the 2nd of April, is Autism Awareness Day. I wrote last year of some of the many things of which I am aware as an autistic person – the unfairnesses, the hurt, the constancy of misrepresentation and misunderstanding, and the oppression we face as a community from the world at large.
Those problems are still there, though some things are getting better. Last year’s post was very necessary for me in some respects, allowing me to get some issues off my chest. But there is a greater point about this month that the autistic community often prioritises over the traditional awareness model, and which I somewhat ignored when I wrote my old post. Instead of celebrating autism awareness, many autistic folk, particularly online where I interact with most of them, prefer to talk about autism acceptance as the focus of April for several reasons.
Firstly, ‘autism awareness’ has become something of a byline for organisations such as Autism Speaks, who use it to promote fear around autism and autistic people. They want us to be aware of the ‘epidemic’ of autism, the horrors it inflicts on those who are around autistic people, and why it must be cured and eradicated. They ask us to ‘light it up blue’ and use puzzle pieces to signify that we need ‘solving’ or that we have something missing. Awareness is used as a weapon against the very people it’s meant to be helping, with dangerous, ableist rhetoric that dehumanises, stigmatises, and hurts autistic people. The voices of those who espouse this kind of thinking are loud enough already without giving them yet more attention.
Secondly, awareness is very easy to confine a single day. One day a year, use a hashtag, comment something loving to an autistic person you know, maybe catch a video or read a blog post, and boom, you are aware. Right?
None of these things is a bad thing to do, of course. And I am as guilty as anyone when it comes to the thrum of activity that comes from me around April and then dies off to only produce two blog posts for the rest of the year. But what it does is makes being aware of autism an isolated thing, rather than continuing for the other 11 months of the year.
Relatedly, and lastly, awareness alone doesn’t actually help us, in general. While awareness is and of itself is clearly not a bad thing, and is obviously a necessary step in any ally’s journey, stopping the conversation at awareness misses what would truly help. It does not elicit ongoing action of those who want to be allies to us, and can end up leaving us high and dry when April is over. You can switch off awareness, leave it behind when the 1st of May comes round, and ignore it again until next April. The problems we autistic people face don’t lessen just because our turn on the awareness carousel is over for the year.
These are just some of the reasons why many autistic people, including me, do not find awareness to be a useful focus at this time of year, and why we talk about acceptance.
Autism acceptance demands that we do not see autistic people as broken, defective, wrong, or otherwise less than human. Rather than simply othering us, acceptance embraces who we are, accepting our differences, and adapting to accommodate them. Acceptance listens to autistic people when we talk about how we want to be referred to, takes in the terminology around our lives and experiences, and presumes enough competence of us that we can tell our own stories in our terms. Acceptance does not say to parents that they must ‘grieve’ a newly-diagnosed child, or treat autistic people as lost or missing. Acceptance sees us for who we are, not who we aren’t, and takes on the job of helping the world be more accessible to autistic people.
It may sound like a lot. I get it. Acceptance asks for a paradigm shift, breaking away from the ableist trends of society at large, centring those voices deemed too frail to speak for themselves, and it involves hearing uncomfortable things and changing deeply-ingrained actions. It involves good and lovely people accepting their own internalised ableism, which itself isn’t their personal fault or something they asked for, and deconstructing their best intentions to reform them into something that fits the issues we face in reality. Acceptance asks these things of everyone, autistic people included, and it doesn’t promise that it’ll be easy.
Awareness is still not a bad thing, but ‘autism awareness’ is too general a term to be of much use. The autistic stories being told usually centre white, male, officially-diagnosed people, when they centre autistic people at all, and while I will never say those people are not valid, it is vital to look beyond that paradigm. Seek out the stories of autistic women/those designated female at birth; seek out the voices of autistic people of colour, who are so often ignored in the mass of autistic narratives out there and who mostly cannot access official diagnosis; seek out the stories of our queer and trans autistic siblings; seek out the stories of people who cannot access official diagnosis, and thus the care and support that usually require one; seek out stories that cover more than one of these categories. They are out there, and they deserve to be heard as much as, if not more than, this privileged white blogger.
Autism acceptance is not going to be achieved overnight, on the back of a single blog post, or even this year. There is too much to do to guarantee that. But we can and must centre autistic voices from all corners of the globe and every stratum of society. We need to look critically at the autism-related stories we do get, seeking out autistic voices where they are not being heard, and steering away from stories that centre non-autistic people. We need to examine our internalised prejudices, get over our surprise at their presence, work to deconstruct them, and do better. We need to widen our perceptions of what autism is, who “can” be autistic, and believe autistic people when they tell us their stories.
Awareness alone is not enough; acceptance is the key. Action is how we achieve it.