As you all know, I've spoken numerous times on this blog about the problems inherent in the mainstream media's understanding of Autism Awareness Month. The focus on curing, the pathologizing of personality types, and other such issues are just a few of the many facing those of us on the spectrum at this time of the year. What I haven't touched very much on, however, is simply how little real understanding there is among people. Indeed I've found that, despite everyone being so very terrified of Autism, many don't even really understand what it is and what the best ways of working with it are.
Recently, I was visiting my mom's side of my family in Kingston, Ontario and while I was there, I had an opportunity to talk to Kingston's M.P.P. (Member of Provincial Parliament for you non-Canadians out there)'s aide about my concerns over some of the provincial government's new Autism spending priorities. My cousin is also Autistic you see, and he felt the need to go provide a real human face to the whole thing. Naturally, I enthusiastically tagged along. While there, I took the opportunity to explain my concern over a recent image released by Ontario's provincial government in honour of Autism Month encouraging people to “light it up blue.” I talked about how Light It Up Blue is a propaganda campaign promoted by Autism Speaks, how it undermines the ability of those of us on the spectrum to speak and exist for ourselves, and how otherwise problematic the campaign is. I even suggested that the government use “Red Instead” and “Neurodiversity Month” in place of Light It Up Blue, since they are more respectful of the agency and rights of Autistics. Well, an amazing thing happened; the MPP's aide not only listened, she smiled in approval and understanding, as if a rainbow-coloured, infinity-shaped lightbulb had gone on upstairs. She thanked us both for the input and told me she had never considered what I had said before but that she'd get right on bringing it to Sophie (the MPP)'s attention.
I had made a difference; and it felt amazing!
The whole thing really drove home for me how little most people know about Autism. Granted, we've all heard the word, seen the propaganda, and probably all either know someone on the spectrum or are there ourselves. For most individuals, however, that's where it ends. The reason why most people think Autism Speaks is a great and charitable organization, for example, is that there is a precious lack of understanding. This is of course, not helped along by the fact that most information about Autism is presented by clinicians, politicians, parents and charity groups, with most of Autistics' actual stories being drowned out by these voices. It's a frustrating dilemma because most would probably turn wholesale against the mainstream understanding of Autism if only they knew better. This isn't meant as condescension; it's merely a fact.
There is a common idea among activists that it shouldn't be the responsibility of the oppressed group to explain themselves and educate others. While I understand the sentiment behind this, I don't find its fair nor applicable in the case of the Neurodiversity movement precisely because of this lack of information. While its true that we shouldn't HAVE to explain to others what its like living on the Autism Spectrum, the reality of the situation is that we often must. After all, if we don't, who will? If those of us who are neurodivergent don't speak up and contribute our human stories to the conversation, then the discourse will continue to be dominated by researchers, clinicians and parents' groups. The fact is, most people do want to help and meet us where we are, but we first need to help them know exactly where that is. Education is an essential part of improving the world for those with ASD and other neurodivergent conditions. It's the only way we can fight back against all the lack of understanding and actually build a world that is fair to everyone no matter the circumstances of their birth.
In the words of Peppy Hare from Star Fox (because it's kind of become my obsession right now), “Do a barrel roll,” educate others, and keep fighting the good fight!
Yours in Diversity,