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.
Posted by gingerheaddad with WordPress for BlackBerry. I kinda like posting with my Blackberry.
Gingerheaddad 
You make some interesting points. The topic of the moment appears to be Jenny McCarthy. I’ve never paid one whit of attention to her. I know she’s there. She has a circle that does not intersect mine except when something explosively stupid is said or done and the reverberations catch me at the end of their expanse like the outer ripples of a stone cast in a pond. I still know only the bare skeletal version of what has transpired with the bleach and the speech (haha – I made a rhyme). Of all the posts, yours was finally the one that made me peek at Generation Rescue’s Twitter feed to see just who posts in her stream of merriment. That was interesting – wanna be actresses and other little oddities – especially the bit about the Karma Foundation’s upcoming June 23rd Kandy event in which it has touted itself as so magnanimous in “honoring” GR as a “deserving charitable organization”. I could write a book based on that article alone. I’ll leave it to you to peruse that topic on your own…
But all that said, it’s not really what I wanted to comment upon here. As an expert, experienced fundraiser, you have excellent credibility in your assertion of the reasons to generate “awareness” about any topic, most notably to generate new supporters and donors. And I’m certain you are right on point. But like, many things, something that starts out with its beliefs and reasons can morph into something else. Silly, but the easiest example that pops into my mind is that many of my friends of the Jewish faith still celebrate Christmas. Many call themselves “Christmas Jews”. They laughingly tell me how it has become a time of year where they put up a tree and exchange presents, have a great dinner and celebrate – not Christ – but the season. They do not believe in the religious reason for the holiday but they still follow the traditions and enjoy them nonetheless.
It is in that same vein that I celebrate Autism Awareness Month. I do not believe in the organizations that “use” Autism Awareness Month for their own purposes but despite what you or I may think of Autism Speaks, it does get the word out. And blue as the color is not a “bad” color. It has been adopted by landmarks all over the world to recognize autism as autism and not as the organization that may have started the blue.
I find your words exceedingly clever in the acknowledgement that the spectrum includes all colors and all levels of autism and that “bleach” removes all color. As blue has become internationally associated with Autism Awareness Month, I don’t believe that by going blue or using blue I am selling out to Autism Speaks but I am happy to use it as a conduit to raise awareness to the many people I come in contact with. For all of us in the community, I think Autism Awareness is a year round job – thus our many year round blogs.
In the end, I guess what I’m saying is I like blue. I don’t like Autism Speaks or Generation Rescue – I’m not actively out there with rage on but I do use what is in front of me as a tool to encourage awareness and to teach those who don’t know. It worked this year with blue hair. I started a lot of conversations – one of which led to our feature in the local PBS special on autism in the Sacramento region. So if you can’t beat them, you don’t have to join them, but you can always use them to your advantage… 🙂
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Thank you so much Karen for your great thoughts.
I don’t think often or get too exercised about Jenny McCarthy. I give her credit for raising the profile of autism and engaging people in discussing it. The more she discusses it as a celebrity the more the rest of society is discussing it. The fact that she has discussed it so openly over time has emboldened other parents (like us) the opportunity to discuss how our lives with autism in it are similar and different.
That is pretty much how I feel about some of the fellow travelers connected to Autism Awareness Day. It is something that we can share with people who are connected through asd and those who want to know more. I don’t need to accept the views of everyone in the tent to recognize that is better that we have the tent.
Having a single colour or a single symbol like the puzzle piece makes it easier for us to rally around and easier to explain to people about autism and invite them into the discussion. Last year when I saw someone wearing a blue shirt on April 2nd it gave me an immediate opening to discuss Autism Awareness Day, my son and the spectrum. This year when I saw your blue hair I knew I was going to do it next year. I won’t throw out blue or the day because they are important ice-breakers to start a conversation.
Seriously, I want blue highlights with my red hair next year.
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I’m marking that on my calendar! 🙂
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excellent points 🙂
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Very well written post. And good to hear your points of view. 😉
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Thank you!
I recognize that the language around “curing autism” is very loaded and who we partner with to get the word out about awareness/acceptance can be a delicate balancing act. Our first responsibility should be to understand that what we want as parents may not be what our children would want. For me that means listening and promoting views of people who are on the spectrum.
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I enjoyed reading this. I don’t live in the US & don’t really know anything about the whole ‘blue’ thing. But the bit of your writing that really struck me was the need to listen to and be led by the community for whom the awareness / acceptance is being raised. Things like awareness months and days are useful to attract media attention etc. and for me I would then want to use that as a catalyst to enable people on the spectrum to raise awareness in the ways they feel are appropriate. I have been involved with the disabled people’s movement for a while and as disabled people we now tend to talk in terms of ‘disability equality’ rather than ‘awareness’ because awareness almost allows people to be passively ‘aware’ rather than actively accepting and may be challenging their own behaviour and attitudes. You say you have written this 2 months late and I have found it even later, but it is very relevant and I’m glad I found it.
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Hi and thanks for reading and commenting. I read an interesting post by Autistic Hoya http://autistichoya.blogspot.ca/2012/07/silencing.html this week about one person’s response to 50 Cent’s comments. Her comments about who speaks for autistic people were really interesting to me and relevant to this post. When a child is young, we expect parents to speak for their children. That’s not what we expect when a child reaches maturity and their views conflict with their parents. Also, being non-verbal is not the same as not being able to communicate, so what do we need to do to make sure every voice and perspective is heard.
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