April is Autism Awareness Month. Every year, people on the spectrum get a month to bring “our condition” — that is, that of being, thinking and communicating differently than agreed-upon social norms — to the attention of a culture that might just as soon forget our existence. We are told that the problems we as spectrumites face — discrimination in work and school; brutality from professionals, service providers and parents alike; social ostracization and ridicule — will be mitigated if only people were more “aware.” This is complicated.
On the one hand, the growing movement for “acceptance not awareness” heroically championed by self-advocacy networks is right on. The loudest voices in the “autism awareness” arena, particularly Autism Speaks, have been exclusive to non-autistic people in harmful and invalidating ways. They propagate misinformation about the real experiences of autistic people and create environments where sympathy for parents who murder their autistic children is encouraged and cultivated. They limit the ability to communicate to verbal or written language and advocate for “treatments” or “interventions” such as ABA or social skills classes that force people on the spectrum to contort themselves to fit in and come as close to neurotypical functioning as possible while disregarding the human beings they are. The idea people on the spectrum are human beings with human feelings needs to be met with acceptance, not simply awareness.
More broadly, though, I think much of the “apathy” we’re seeing in public life — low voter turnout, sputtering activist movements, that so many seem to simply be burning their heads in the sand — is actually “awareness fatigue.” We don’t have too little information; in a global society with a 60-second news cycle where we have access to more information every moment than we could possibly digest properly in a lifetime and the technology to remain connected to it all day every day, I think we’ve got too much information. “Autism awareness” diminishes an entire group of people’s daily, minute-by-minute, reality to a cause. A single month for “autism awareness” can make it seem like the experiences and lives of one in 68 children, to say nothing of the adults who may or may not be diagnosed, is an optional topic to get involved in or not.
On the other hand, as I’ve sought services and support after being diagnosed with ASD at the age of 28, I have come across deep ignorance and downright denial on the part of professionals claiming to provide said support. Social workers, employees at vocational rehabilitation agencies and even highly trained therapists are stumped by my mix of gifts and needs; I am often educating professionals and service providers even as I am paying for their help. Many people, especially women, are misdiagnosed with borderline personality disorder or even schizophrenia when they really are on the autism spectrum.
So awareness does still seem to be lacking and this lack, particularly among professionals and service providers, creates even more hurdles for those on the spectrum. But “raising awareness” as practiced by well-established and well-respected groups like Autism Speaks, requires autistic people to justify their experiences and existences simply because they are not readily understood without effort by neurotypical folks. One damaging stereotype of autistic people is that we “lack empathy” but who, in the above-mentioned scenario, lacks empathy there?
“Acceptance” above the present form of “awareness” seems like the more healing and inclusive approach, especially because, the way the most magnified voices are engaging in “awareness” paints autism not as something to “be aware of” but autistic people as folks to “beware” of. But we autistic people are asked to bridge the gap created by neurotypical/ASD differences every day we want to be out in the world; “acceptance” doesn’t feel like it goes far enough in asking that neurotypical people return the effort. I’m also not for “acceptance” as a handout or a favor. Acceptance literally means “the action or process of being received as adequate or suitable, typically to be admitted into a group;” one of the definitions of “awareness” is “concern about and well-informed interest in a particular situation or development.” From this autistic person’s perspective, it’s time for both.