Autism Month – Awareness or Acceptance or More?
April is Autism Awareness and/or Acceptance Month, depending on which groups you associate with. The Autistic Self-Advocacy Network uses “Autism Acceptance”, while the Autism Society of America uses “Autism Awareness”, and the Autistic Women and Nonbinary Network seems to use both terms.
Personally, I kind of hate using “awareness”. Spreading awareness is what you do for a disease. The gay rights movement didn’t spread “gay awareness” – AIDS awareness, definitely, but I’m sure you see the difference. Autism isn’t a disease we have, it’s part of who we are.
I don’t love “autism acceptance” that much, either, but at least it’s movement in the right direction. Autistic people are everywhere, in all walks of life – we’re coworkers, customers, friends, parents, and lovers. Acceptance really ought to be a foregone conclusion.
Recently, however, I’ve had cause to realize that we still have a long way to go with awareness before acceptance can be as universal as it ought to be.
When I applied for rent assistance and mentioned my autism, and the young man said, “I would never have guessed” with a look as if he thought I was lying – that was a moment which could have been avoided by raising awareness. If he had ever been taught that autistic people can work and rent apartments and hold conversations, that young man might have taken me more seriously.
When I went to Vocational Rehab claiming my autism as one of the reasons I needed job placement counseling, and my caseworker summed it up as “you don’t like people”, then asked, “if you don’t like people, why were you a massage therapist?” – again, awareness could have made that less awkward. That was a grown man who works with people with disabilities, including autism, every single day, but obviously, he still has a lot to learn.
I regularly read stories from autistic people who fear losing their jobs if they tell their employers they’re on the spectrum. I probably would have lost my last job if I had told and asked for accommodations. Since my diagnosis, I’ve been upfront about being autistic on every job application, and I haven’t heard back on a single one. Maybe if employers understood autism better, especially the part about us being capable people, we wouldn’t be stuck in this catch-22 where we need help but will lose our livelihood if we ask for it.
So here’s my plan for this Autism Month:
I’m going to talk about some advocacy groups that do good work for both awareness and acceptance. I’m also going to tell you about my story, how I came to be diagnosed, how I’ve gotten through without formal therapies, and what kinds of help I’d really like to have. There will be some discussion of why NTs don’t understand us (it’s not all from lack of trying) and how that could change. I’ll also look at some ways to be authentic at work without attracting too much attention.
We, as a community, have come a long way from the days when a diagnosis of autism meant a child would be institutionalized for life, and that is something to celebrate. But we still lack services for adults and for those considered “high functioning” – and yes, functioning labels are another thing we need to overcome. Our jobs still hang in the balance, we’re still asked stupid and humiliating questions about if and how we have sex, and the very word “autistic” has been picked up as a replacement for the now-unacceptable slur “retard”.
In the words of George Takei, “There is still work to do.”
Luckily, we have a great community and some really good, highly committed self-advocacy groups to help us keep moving forward. And we do have allies, even if they don’t totally understand our lives. Hasn’t that been the case for every group before us who had to fight for their rights to be part of society at large?
So that’s what I’m going to talk about this April. I want to hear from you, too. How do you feel about awareness vs. acceptance? Would you prefer to blow past those and go right on to Autistic Pride? (If so, I’m right there with you!) What do you feel is the biggest problem we ought to focus on first, and how do you think we could best address that problem?
Let’s work together on this. It’ll take all of us to get there.