April 2nd is World Autism Awareness Day, and, to celebrate, I thought it would be a good idea to throw myself into this particularly turbulent sea.
As most of you reading will know, this is a topic that has been covered by a multitude of people who are far more eloquent and knowledgeable than me. It’s a conflict of concepts that has raged for as long as I have been active in the autistic community and, as such, this is an incredible unoriginal idea for a blog post.
But I’m going to do it anyway, because this blog has my name on it so I can do what I want. Well, it doesn’t actually have my name on it. But it’s still mine. So there.
Now, as someone who also identifies as bisexual, the issue of awareness/visibility is something that I have to deal with twice a year. My dear friend Jules, who has had a fundamental role in shaping me as a person, most keenly in my queer identity, has a running joke that she shares a variation of every Bi Visibility Day: better make an effort with your outfit today as it’s the only day of the year that other people can see you!
Its not the highest of brows or wittiest of jokes, but it never fails to make me laugh in that tired and knowing way that all groups with such days will recognise – a joint snicker that shares an unspoken understanding of something that’s actually much more bothersome. In fact, it’s somewhat of a coincidence that World Autism Awareness Day follows so quickly on the heels of Trans Day of Visibility, which I have seen raise similar questions about the usefulness of ‘awareness’ and ‘visibility’ without tackling the deeper issues surrounding not just understanding, but acceptance and celebration.
We’ve reached a point where awareness of autism is higher than it’s ever been. In fact, in 2015, the National Autistic Society did an extensive study into this,and their key findings were:
“99.5% of people in the UK had heard of autism. This means that, more or less, we’re all aware of autism: ‘autism awareness’ has arrived.
However, this doesn’t mean the public understand autism. 73% of autistic people and 60% of their families told us that they change their own behaviour to reduce the chance of intolerance from the public.”
Although almost 100% of the public has heard of or is aware of autism, what percentage actually have an understanding of what autism is? And how many of the people who ‘understand’ it actually understand it to a point of acceptance? Do they understand autism to the point that they advocate for and celebrate it? Or do they understand autism in the sense of wanting to change or ‘do something about’ it?
The wariness that many people have around ‘Autism Awareness’ is that it is propagated mainly by big ‘autism’ charities rather than autistic voices. The main culprit, of course, being Autism Speaks and it’s ‘Light Up Blue’ campaign – blue was chosen here partly because it is, according to them, a ‘mostly male’ condition, and even this year, as they try to appear more progressive with the hashtag #AutismIs, the instructions for the tag call autism ‘this disease’.
The whole concept of ‘Autism Awareness’ has been created without autistic people, and even though the door is being nudged open to let us in, we’re still stuck at the back of the room whilst the rich powerful neurotypical people hog the stage. No matter how hard we shout that what they are saying is hurting us, they still have the microphone and they’re not prepared to listen.
Hell, the White House, possibly the most famous residence in the world, was illuminated blue despite the clear yet anguished cries of the autistic community. Although I could insert a rant about Trump and his dangerous views pertaining to autism (see my tweet for more details), this goes far beyond that. It seems that, on a worldwide scale, ‘Autism Awareness’ does not correlate with actively being aware of, and heeding, actually autistic voices.
I think one of the fundamental problems with ‘Autism Awareness’ lies in the connotations of the word itself. ‘Awareness’ is defensive, it’s about protecting yourself; being ‘aware’ of your surroundings is to be alert for danger and ready to recognise and tackle any threats that come your way. We don’t speak of awareness in terms of good things. And whilst it makes sense to have awareness for cancers, road safety and crime, putting autism in the same ‘awareness’ bag is inherently insulting for autistic people
‘Awareness’, to me, strikes the same uncomfortable chord as ‘tolerance ‘. I know why people use it, and I know that the intentions are not bad ones – but it’s like nails on a chalkboard nonetheless.
A few years ago, I attended an anti-hate crime vigil in Trafalgar Square, and was lucky to hear Stuart Milk (nephew of Harvey Milk) say the following words: ‘I don’t want tolerance. You tolerate mosquitoes. We’re not mosquitoes. We’re butterflies, and we should be celebrated.’
I feel the same way about autism.
I don’t want people to just be aware of me. I do want them to acknowledge my existence, but I also want to be accepted, respected and celebrated – not in spite of my autism, but with my autism. Maybe even because of my autism.
We’re not mosquitoes. We’re not threats. We’re not puzzle pieces. We’re not tragedies.
We’re autistic. We’re butterflies.
And we deserve to be celebrated.
So Happy World Autism Acceptance Day!