Anyone with a calendar can tell that I am writing a post about Autism Awareness Day two months late.
I am the kind of person who needs time to digest and process some things. Sometimes I am quick to leap in to an issue, but other times I need to let my ideas swirl around a bit. Sometimes a catalyst pops up and helps me to focus my thinking a bit.
Please, don’t worry. This post isn’t something tedious about how I think or why I post less frequently than others.
No, this post is about how autism awareness makes me a little uneasy. The catalysts that finally made me post were that so-called warrior mom who wants to be in Playboy again and folks advocating bleach enemas.
2011 was the year I first became aware of Autism Awareness Day. Although my son had received his diagnosis some years before, it was only through being active on Twitter that I found out about it last year. I delighted in talking to someone wearing a blue shirt about it on April 2nd, but felt social media campaigns about it were pretty much preaching to the choir.
Having been a fundraiser for 15 years, I know a fair bit of the why’s and how’s of awareness days. We do them because we want to energize those affected by an issue, create a critical mass of people talking about an issue and sometimes we even hope to find new supporters and donors.
What happens, though, when something like Autism Awareness Day doesn’t speak in the voice of those most affected: people who are autistic.
Organizations like Autism Speaks and Generation Rescue devote great resources to researching a cure by investigating, among other things, vaccines. Finding a cure for autism necessarily means a world view that autism is a disease and can be treated using a medical model. We know that autism is not a disease and is a life-long condition. Yes, drugs can be taken to deal with some aspects of autism, but ABA is the gold-standard treatment–not a cure.
Being a bit of a research-reader, I do not believe vaccines are linked to autism. When my youngest daughter’s school recently sent home a note about an increase in whooping cough in her region, I was glad that all of my kids have received their vaccinations.
So, if autism is not a disease, why spend so much money looking for a cure?
And why blue?
Autism Awareness Day has become closely linked to Autism Speaks despite the day being proclaimed by the UN. It could be a day to celebrate neurodiversity and lobby for more insurance coverage in the United States or shorter wait times for IBI in Ontario or more diagnoses in France, but it has become “Light It Up Blue” and when we walk into a certain hardware chain we see the blue light we could buy. That blue light does not fund any part of my son’s IBI and nor did it help reduce wait times in my region for his therapy.
No, that blue light funds a large American charity devoted to something I don’t believe in at all.
Yet, I want something of what they want: more people talking about autism.
A friend wrote to me about how Autism Awareness Day was going to be observed in her son’s school. The school wanted children decked out in blue t-shirts as part of an awareness & fundraising campaign. The child didn’t want to have attention drawn to him as a child on the spectrum. He wore another colour shirt. The school with the best of intentions wanted to be inclusive yet she did not consult with the families most affected by asd and did not ask the child what would make him comfortable.
Instead of blue-washing Autism Awareness Day, a number of people on the spectrum decided that another day was needed. November 1st is Autistics Speaking Day and it offers those of us not on the spectrum the opportunity to see what is important to people who are autistic. It raises true awareness about autism from those who know it best. The idea came from Corina Becker who wrote about it on her blog, No Stereotypes Here.
Around April 2 there were a lot of posts from adults on the spectrum that made me realize how conflicted I am with Autism Awareness Day. One that really struck me was It’s Bridget’s Word: Autism Exhaustion Month.
Some folks have been writing that awareness is not enough. We must strive for acceptance. I would argue that acceptance is not just about what people on the spectrum may or may not achieve, it is also accepting their voices are the most important constituency in the autism communities.
Stuart Duncan writes on his blog, Autism from a Father’s Point of View, often about acceptance. The fact that he has recently been diagnosed on the spectrum adds even more weight to his reasoned and thoughtful posts. The Aspie Side of Life did a wonderful post, Acceptance is Acceptance.
In the end, there are many voices in the autism communities. I am more comfortable ensuring that an Awareness Day is devoted to making sure that voices not often heard get more attention than someone selling blue lights. Light, like autism, is a spectrum and blue describes only one portion of it. Bleach, of course, is designed to remove all the other colours.
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