Friday, January 17, 2014

Autism Acceptance: Don't Be on the Wrong Side of History

Shannon Des Roches Rosa 
www.squidalicious.com

You don't want to be on the wrong side of history, do you? That's a particularly important question to ask yourself regarding autism acceptance. It's important for you to accept, and then help other people understand, that autistic people like my son are your fellow human beings, with your same inalienable rights to live happy and pity-free lives. That whatever their needs and abilities, autistic people are not "less" than other people.

You can start small with Autism Acceptance if you need to, start on the personal scale -- taking the time to understand, for example, that my autistic son Leo doesn't like restrictive shoes, and prefers Crocs -- it's a sensory thing. Why would I put him through the trauma of wearing other shoes? Understanding that he finds having a straw in his mouth soothing, and letting him have the damn straw because it helps him self-regulate and does not get in the way of his speaking. Understanding that part of his autism is needing an extra beat or two to process spoken language, and not trying to hurry him through that beat or two. Presuming competence, and never speaking about or in front of him as if he is not there.

It is also recognizing that Leo doesn't just love Easter Egg hunts for their candy, but is a visually-oriented kid and is really, really good at finding those colored eggs -- better than his non-autistic sisters. Recognizing that, yes, his visual memory really is so phenomenal that he recognizes when we're on approach to an interstate-adjacent restaurant he's only been to once before -- miles before any of the restaurant signage appears. That he has perfect pitch, and a beautiful singing voice, and is not afraid to use it. That he adores and excels at long hikes in forests or along beaches. That I adore him, that he adores me, that we're part of a happy family.

Being thoughtful and accepting (and appreciative!) of autistic people like Leo is also the right thing to do from the perspective of compassion. Lack of acceptance doesn't just deny autistic people their rights -- it hurts them. Autism parent Colin Meloy understands how negative media messages about autism, and the lack of acceptance those messages demonstrate, can affect autistic peoples' self-esteem and self-regard:
 "You have kids like my kid -- who can read and is verbal -- but is clearly very autistic. There is no doubt Hank has autism, and severe challenges that will likely be with him throughout his life -- and the last thing we'd want him to see or hear or read is how this thing that is a part of him, part of his identity supposedly makes peoples' lives a living hell and tears apart families."
Autism acceptance is about accepting autistic people in general, accepting that my son and his autism spectrum-mates are a diverse crew, accepting that while not all autistic people can speak for themselves, there are large and vibrant autistic communities in which autistic people do speak out, frequently -- and that, when it comes to autism, you need to listen to them.
Leah Kelley's son, for instance, is not at all pleased about the negative way the media tends to portray autism:
"...at barely 14, H is already sensitive to what others are saying about autism and he often feels uneasy and personally threatened by representations of autism in the media that are framed as tragedy and epidemic."
Autistic advocate Kassiane of Radical Neurodivergence Speaking is similarly tired of hearing how autistic people are "burdens" and part of that unsubstantiated "epidemic." Kassiane can read, and she can hear, and she is retaliating with superficially wry but core-deep angry humor:
"49 in 50 people lack autism! Help us find a cause! Help us develop more effective therapies! Help us integrate those lacking autism into a functional society with autistic people! This campaign, while sounding a bit silly, is also a bit serious. Tone it down. Tone down the fear rhetoric. Tone down the alarmism. It is not necessary to light anything blue to show support and love for an autistic individual that can be accomplished by, well, actually supporting autistic people."
One of the best ways to listen to autistic people is by reading their blogs, as Alyssa of Yes That Too knows. There are multiple benefits to doing so:
"Long story short, as long as your goals for your child come anywhere near lining up with the ones most parents of neurotypical kids I've spoken to have (wanting the kid to be happy, satisfied with their own life, not in danger of dying due to physical/medical needs having been neglected, not traumatized, not getting abused) reading the blogs of autistic people is a way to realize that all this is possible -- and give you both hope that this will happen for your kid and ideas on how to help your kid make it happen."
Finally, Autism Acceptance matters because until we get to that point, it will be difficult to do the work that needs to be done to ensure proper accommodations and supports for our autistic children and their adult spectrum-mates. As Matt Carey of Left Brain/Right Brain writes about the new CDC "1 in 50" autism numbers:
"We have roughly 2% of our school age children in the U.S. who are autistic. Disabled to various degrees. Probably a like number of adults as well. For those who don’t accept this notion, keep in mind that one of the major themes of the recent report was how a large fraction of autistics were identified late. They had fallen through the cracks and were possibly not receiving the supports they needed. We are talking teenagers, not just young children. It isn’t that great a leap to say that we there is a large population of unidentified autistic adults.
"Most news stories and most discussion will focus on one number: 2%. I would argue, and will argue, that a factor of at least equal importance is not how many autistics there are, but how diverse this population is and how little is really known."
Do the right thing. Invest in Autism Acceptance. Listen to autistic people. Presume competence with non-speaking autistic people like my son. Put compassion and understanding first. Stop thinking about autistic people with pity, or fear -- and they may stop thinking about you that way, as well. And the world will be a better place. I mean it! I believe it. I do.


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A version of this post was previously pubished at BlogHer.com.