Wednesday, April 3, 2013

Autism Is Awesome: Why Awareness Won’t Cut It

This post is a reprint from Tim Villega's blog. The original can be viewed here:


Why in the world would I say that autism is awesome? MY goodness…of all the words.
If you don’t believe me…look up the word.  This word describes everything from the sublime to the daunting part of autism and how it affects individuals and families. It encompasses the hope and fear that we grapple with as well as the inspiration and genius of autism.

Today (April 2nd) is a very important day in the autism community. In 2008, the United Nations designated April 2nd as World Autism Day to raise awareness of the need to improve education, career opportunities, and community services and supports for Autistic individuals. (For a short summary of the history of “autism acceptance” events click here) But for all of the awareness…where has it left us? Since then…autism awareness has “blown up” (as the kids like to say these days). Here is an excerpt from something Steve Silberman wrote about this very topic:
Our society is not only “aware” of autism, it’s obsessed with the subject. Unfortunately, though, this obsession is often misdirected. Instead of worrying about what families of autistic people are supposed to do when the services and support devoted to children run out after high school, or how autistic adults themselves are supposed to lead happy and productive lives without access to employment and health care, we perseverate about the latest theories of autism causation. Did you see the news that older grandfathers may contribute to autism risk? Have you heard the rumor that living near a freeway is somehow related to autism? Did you see the thing about mothers who take antidepressants or fail to take folic acid supplements? Have you read the story in the New York Times about that new inflammation theory? It’s enough to make young couples think twice about having a kid at all.”
Currently the autism rate, according the Centers for Disease Control (CDC), is 1 in 50. There has been plenty written about this and what to make of this rise in prevalence. Everything from “we’re getting better at diagnosing it” to “there is an autism epidemic“…and I encourage you to read all of it. In fact, there are many of my friends and colleagues that fall in one of these two camps. A number of them will change their Facebook and various social media avatars and “light it up blue” and still others will follow with “autism acceptance” avatars.

So…what I am getting at? A few things I would like for you to consider as you mull over the plethora of information that you will undoubtedly encounter this “Autism Awareness” April.

1. Who would be a better source of information about autism? Who are the true “experts” about autism?

2. Would it not stand to reason to examine what self-described autistics had to say on the matter of “autism awareness”? Does the fact that certain people with autism who are able to communicate via typing or other modes relegate their opinion to the sideline? Doesn’t their voice matter?

3. If inclusion is really our aim…why would we not include, in a meaningful way, autistic people in the planning and implementation of “awareness” events? In fact…there is even a pledge that you can take to do just that!
Just so we are crystal clear…I am in no way saying that having a child with autism is somehow always simply wonderful and the easiest thing in the world. What I am saying is that with any challenge (insurmountable as some are) in life we can take it different ways… I believe as Terri Mauro points out in her piece about disablism:

Parents of children with special needs often feel, I think, that there’s another child just like the child they have — one that’s been stolen by disease or disorder, or one who’s just awaiting release. If we love that child, the one we imagine to be our true child, are we betraying the child before us? If we love the child before us, are we betraying the one trapped somewhere in another universe? If our child is suddenly easier to handle, quick to blend in, different in some hard to identify but fundamental way, do we celebrate that or worry about what was lost? (And if we could punch a hole in the universe to save our alternate child, as another Fringe character does, would we cross that line? Would we risk the lives of other children to try to put things right afterward? How could we? How could we not?)

[I apologize if the Fringe reference is out of left need to read the whole post for the context]

I believe the choice is to love. To love as absolutely best we can. This goes for parents…educators like myself…and for people with autism. My sincere hope is that when we love a person with autism…we love them for who they are…not their potential…not their non-disabled “other universe version”…not in spite of their autism…just for being them. This is why awareness just won’t cut it. It is time for acceptance.

1 comment:

  1. It's been twenty years since Jim Sinclair published "Don't Mourn For Us" ( Most parents no longer consider its ideas radical, but there are so many who still need to read and absorb it.


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