Quirk Monster #14: Why I don’t like World Autism Awareness Day and what you should celebrate instead
April is typically a time of highs and lows for me. There’s usually a lot of public holidays and I’m looking forward to a restful 6 day long weekend that I’ve needed for quite some time.
My autism diagnosis anniversary is on April 26 which also happens to be the socially acceptable date to start using a heater here in Canberra because that’s when we get our first real glimpse of winter.
This year I had front row tickets to see the Wizard of Oz in an arena show which was going to be pretty exciting until COVID-19 dropped a house on it.
That sucks, but the most challenging part of April for me has to be World Autism Awareness Day on April 2 and Autism Awareness Month, which runs for — you guessed it — the whole month.
You might think that I’d be more than happy for you to light shit up blue, demolish puzzle piece topped cupcakes and tweet hashtag yay autism from social isolation, but honestly it makes me want to throw up.
I find it all cringeworthy, tokenistic, triggering and exhausting. As an autistic person, I feel like it isn’t really for me. It’s for everyone else and I am not a fan.
I dread April.
COVID-19 has ensured that there will be no morning teas or large scale social events to avoid this year but it’s not going to stop the deluge of misguided and unhelpful tragedy narrative posts, tweets, articles, videos and who knows what else about this monster I call my brain.
But there is an alternative. There is a far more positive thing you can do to show you genuinely care about the experiences had by autistic people.
Instead of ‘celebrating’ World Autism Awareness Day or Autism Awareness Month, tell the world you’re celebrating World Autism Acceptance Day/Month.
One word makes a huge difference. Don’t tell me this is PC bullshit. It’s not. It’s about being real. I know damn well that people are aware of me and people like me.
They’re aware of me when they yell and swear at me in public because I misunderstood something, they’re aware of me when they’re trolling or abusing me online for my activism work and they were certainly aware of my openly autistic status when I spent a painful 33 months looking for a job.
I’m an autistic person living in a non-autistic world day in, day out. Every day of the year. Awareness isn’t the problem. Acceptance and respect is. A wide sweeping lack thereof. As an autistic person, I am routinely told how I can and can’t refer to myself.
I’m viewed as less capable by default.
I’ve been bullied, pitied, gaslit, mocked and discriminated against for daring to simply be myself.
There are workplaces where my career choices are restricted to a handful of professions and sometimes only entry level roles because non-autistic people have decided for me which roles I am ‘suitable’ for thanks to their autism hiring program. No one seems to notice (or care) how ableist and discriminatory some of these programs can be because it’s all wrapped up in a nice little feel-good bow.
I’m not often viewed as someone who is allowed to dream big or have endless ambitions for the future. I’ve been told to ‘aim low’ and take what I can get. When I do achieve big things, I suddenly become someone’s ‘inspiration’. Not because I worked hard, challenged the world, learned a skill or never gave up, but because I have an ‘obstacle’ between my ears and achieved something ‘in spite of it’. Spoiler alert: the real obstacle is between their ears. I am regularly forced to endure environments and conditions that at best do not support my autism and at worst negatively impact upon it because my support needs aren’t widely respected.
My neurological difference is a socially acceptable insult or a punchline to a joke. I’ve sat in conferences where other UX professionals have given presentations that mention their work researching autistic people and have had to listen to the audience roar with laughter all around me over our apparently hilarious differences and needs. The presenter wasn’t telling a joke, but wow a large number of people in the audience sure thought they were.
As an autistic adult whose differences present as mild but still require help from time to time, support options for me are really hard to find. There’s a lot of options for kids and parents, but as a 33 year old adult who was diagnosed at 29, I’ve mostly had to make my own way.
Here’s what I think autism acceptance looks like. Repeat after me:
I accept that autistic people are the ones who get to decide whether I use identity first language or person first language to describe them
I accept that functioning labels are not helpful
I accept that ‘autistic’ should not be used as an insult or a punchline to a joke
I accept that no two autistic people are exactly alike (there’s no brain like mine, there’s no brain like mine, there’s no brain like mine)
I accept that autistic people are not broken
I accept that autistic differences are worthy of my unconditional respect, patience and support
I accept that autism is not a tragedy
I accept that autistic people have empathy
I accept that autistic people are diverse and exist within every community in the world
I accept that autistic people should hold leadership positions and hold an active voice at the highest levels of every organisation
I accept that all autistic voices have a right to be heard in the way that they feel like sharing them
I accept that I could find an autistic person working at any level within any profession on the planet
I accept that autistic adults need support too
I accept that autistic people are people
There is no way this list is exhaustive, but it’s a good start. Please choose acceptance over awareness this April. Author’s note
This short article is a lived experience example shared from my life to help you understand a little bit more about what it’s like to be autistic. I am just one autistic person in a really big world. No two of us are exactly alike. I can only speak for myself and to my own experiences. If you want to know what other autistic people think — and you should — look them up, talk to them and read their work too. We all have our own voices and this is only mine. This article is part of a mini content series I publish to LinkedIn when I can. You can view the other articles in this series via my LinkedIn profile.