It is April, and that can only mean one thing to this autistic blogger: Autism Awareness Month is here for the whole 30 days of the month, and without a time machine, there’s no escaping it.
Autism Awareness Month has been a thorn in my side for as long as I’ve been an adult. I am at heart an attention-seeker, so you would think having an entire month devoted to people like me would be a joy to behold. But that’s the problem behind Autism Awareness Month. It isn’t about me. It’s not about me—the autistic person. The entire conception of Autism Awareness Month doesn’t even revolve around autism, not the kind I have or the kind that anyone I know lives with. The ‘autism’ of Autism Awareness Month is a mysterious, esoteric, silent force, which magically swoops into the homes of unsuspecting families, and replaces regular, darling children with empty husks, ala the Changelings of ancient myths.
It’s not even entirely about the children who are these so-called “empty shells.” The entire focus of Autism Awareness Month seems to be divided between what sad, pathetic existences they must lead, and the potential for a real, neurotypical, normal child that lies just around the corner in the next type of chelation, cure, or therapy. Rather than shedding light on what autism is, Autism Awareness Month has served to cloud autism further in lies, half-truths, pity, and the tyranny of low expectations.
I’ve watched as a series of Autism Awareness Months have gone by, and nothing seems to have changed in the public eye. I’ve seen promoted and have attended various Autism Awareness Events over the years, and the funny thing is, they almost universally don’t bother to think of how autistic people might function at these events. To give just a few examples:
- There is usually loud music, so loud that those with sensory processing disorder may be forced to not attend.
- The crowds are often suffocating, whether the event takes place at a conference hall, hotel, or outdoors, with no regard given to how someone who functions poorly in large crowds may feel about being squeezed in with so many people.
- There are usually no rules restricting the use of perfume, and I can remember coughing through clouds of it once and deciding I’d rather leave than have my sense of smell continuously assaulted.
There’s something deeply problematic about an event centered around autism which doesn’t consider the needs of autistic people in order for them to equally participate.
That’s not even getting to the actual content of the events. Typically, they consist of speakers, usually doctors or parents. The doctor speakers usually only consider autism within the confines of the medical model of disability, and usually don’t speak about autistic people as individuals, but instead refer to people with autism as a collective, with a shared host of problems. The theme is that those problems need to be researched. It is rare for the doctors to talk about the experience of autism as a teenager or adult. Parents will usually be a bit more personal and intimate, but their speeches can range from “I love my son/daughter dearly and want to do everything I can to make sure they’re happy and successful” to “My child was stolen away from me and replaced with this screaming, in-affectionate demon!”
On very rare occasions an actual autistic person is included as a speaker. But always the autistic person is verbal, articulate, and, even while promoting themselves as an autistic person worth listening to, they sometimes fail include all autistic people under their umbrella of acceptance. Often, the autistic person will promote the notion that those with special gifts and talents, who can more or less live independently (like themselves) should be given the option of living with their autism. But — in a swirl of cognitive dissonance, the autistic speaker may promote the idea that those not like them — without their own special gifts and large vocabularies — well, who cares, cure those other autistic people.
These alienating incidents aren’t necessarily always the case, but they are frequent enough for me to not be surprised when I feel like an unwelcome stranger at an event about my own disability—which certainly isn’t (or shouldn’t be) the goal.
It doesn’t have to be this way, though. The only thing standing between the truth and the current situation is the concept of Autism Awareness itself. It’s time for a new idea, one that seems to be heresy to the people pushing Autism Awareness, but has been the crowning point of the disability community at large for 20+ years now: “Nothing About Us Without Us.” Or, to put it more succinctly, it’s time to throw away Autism Awareness, and replace it with Autism Acceptance.
The fundamental difference I see between the two is that Autism Acceptance is being spearheaded by autistic people themselves. People from all walks of life and in all corners on the spectrum are coming forth and working to tear down these myths established by the Autism Awareness contingent and the Medical Model of Disability. It’s a collaborative effort meant to showcase that, during this month, which is ostensibly all about our disability, we have a right to talk about what our disability means to us, and what public attitudes towards it mean for us.
Autism Acceptance isn’t confined to April. For me, Autism Acceptance is every day. It took me years to understand the harm disablist rhetoric did to my self-esteem, my perception of my own talents and passions, and how I handled my limitations. It’s a powerful thing for an autistic person to learn how to love themselves. It will also be powerful for non-autistic folk to take a moment to see past the puzzle ribbons and the grim statistics meant to show how autism affects more people than diabetes, cancer, and HIV.
Look past all that garbage foisted onto you by those who neither know nor truly respect autism and autistic people, and you will see that what we need from you most is not a month set aside for the purposes of degrading and pitying our existences and experiences, but constant, unwavering support, the patience to listen to our side of the story, and the power for you to put aside your own ideas about who should be listened to, based on what credentials, and to give those of us with the disability as a constant presence in our lives a chance to speak. Just because someone can’t talk (in your language of words and verbal dialogue) doesn’t mean they have nothing to say.
If you want to look for the signs of an Autism Acceptance/Neurodiverse-friendly event, then I recommend looking to the example of Autreat, which pledges to make it a sensory-friendly environment for autistic people, respects our personal space, allows flexible scheduling for those who feel overwhelmed, and is run by autistic people for autistic people. Autreat strives to be the pinnacle of an autism-friendly event.
If you are interested in improving a local event, try to think about what sensory issues I listed above, and think, “How can I address this?”
Look for autistic speakers to book, from all ends on the spectrum. The autism blogosphere is a great place to start, or you could find a local person with autism who may want to share their story. Sometimes, the best way to make your event autism-friendly is to just engage with autistic people to see what they would like to see at their local autism event. Since it’s about their disability, they’re best qualified to tell you what will attract those with autism to participate in these events. And really, isn’t that the best thing you could hope for at your own Autism event?
You can find more information on Autism Acceptance events at http://autismacceptanceday.blogspot.com
A version of this post was previously published at Shakesville.