Autism Awareness Month
Posted on April 9, 2009
By Stephen Drake, Research Analyst for Not Dead Yet
Most people in the disability community are aware that April 2nd is Autism Awareness Day. If you’ve noticed that there’s still a heavy amount of autism coverage in the media, it’s because April has now been delegated Autism Awareness Month.
Autism Awareness Month is a good opportunity to talk about some of the problems, particularly the problems that are actually promoted in the name of “autism awareness.” These problems make many people, including myself, dread the month more than I dread the Jerry Lewis/MDA Telethon, which lasts a mere 24 hours.
The disability community has long criticized the Telethon for its emphasis on a “cure” as the most pressing need for people with disabilities. To promote that agenda, people with disabilities are portrayed as objects of pity. Those portrayals act as additional barriers to the respect, inclusion and accommodations for which people with disabilities advocate.
Like the Telethon, there is a dominant “pitch” used by autism advocacy groups to raise “awareness” – and money. The most succinct statement of that dominant pitch can be found in this press release promoting Autism Awareness Month, from Autism Speaks, the most influential autism advocacy group in the country:
Autism Speaks is dedicated to increasing awareness of the growing autism epidemic and to raising money to fund scientists who are searching for a cure.
To be fair, the press release mentions “advocating for the needs of affected families” and the need for “treatments,” but the main focus is on a cure – the idea that some research will result in a “silver bullet” that will magically erase the neurological differences associated with autism and leave a “neurotypical” child behind. (Yes – I know that adults have autism too, but “awareness” efforts tend to focus on children. That’s why they have poster children as opposed to poster men or women.)
Obviously, anyone familiar with the controversy over the Telethon’s focus on “cure” will see some similarities. When “cure” is put forward as the “solution” to autism – or any disability – the real need for access, supports, accommodations, and inclusion fade far into the background in the “awareness” efforts.
One of the best pieces I’ve seen is on the blog AngryBlackBitch (ABB)– the author has an adult brother who is “profoundly autistic and aphasic.”
Here is some of what she has to say:
Autism is not a childhood disorder. It is a brain disorder that, despite claims made by some celebrity authors, will continue to be a brain disorder once a person with autism reaches 18 years of age. Since there have been several high profile celebrities who have a loved one with autism…and since we now know that autism spectrum disorder impacts 1 out of 150 children who, Gawd willing, will become adults with autism…many a lawmaker has championed funding for programs that serve autistic children.
She goes onto reveal the unintended consequences of the focus on children – while money for research and services are being increased for children, they are being cut back for adults in many states. Personally, I think ABB’s blog is powerfully written, but readers should be “warned” that the language she uses is cruder and ruder than what you’ll find on this blog. To read the rest of her post, click here.
To learn more and find out what kind of things you can do:
Sign the “End the Perpetuation of Pity” Pledge at Change.org. Here’s an excerpt from the intro to the pledge:
As April’s “autism awareness” is used by charities for fund-raising, depictions of autistic people, usually children, as monstrous, fearsome, pitiable, suffering, and a burden become ever more pervasive. So do depictions of brave, successfully “normalized,” or “inspirational in overcoming their disability” children, teens, or young adults.
If you’re unfamiliar with change.org, it’s worth checking out. It is a progressive-oriented social networking site with “causes” ranging from health care to autism. The “autism” cause is moderated by Dora Raymaker and Kristina Chew – both women are dedicated to cross-disability rights issues and pushing them forward on the site. It only takes a minute or two to register on the site.
Bev Harp at “Asperger Square 8” has a set of alternative “autism awareness” posters available for download, printing and use.
In closing, I’d urge people to be hyperaware during Autism Awareness Month. Be aware and on the lookout for harmful stereotypes, misplaced priorities and exploitation. And be prepared to challenge troublesome awareness messages with your own brand of advocacy.
Filed Under Advocacy, Autism, Stephen Drake |
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I’ve been trying to notice celebratory observances of Autism Awareness Month, as a counterbalance to all the dangerous nonsense out there. Here’s one: college-age artist Gen Chandler has an exhibit called “Syndromation,” this month at the University of Victoria:
http://amusedcreations.blogspot.com/2009/03/planning-syndromation.html
Thanks for the link! Great post and I appreciate the resources too.
Thanks for the link to Gen’s show- we had her Artist’s Reception on Saturday and there was a wonderful turnout of people celebrating what Gen’s Autism does FOR her! She was in the newspaper and will be on television tonight and our message is that autism is part of what makes Gen such a remarkable young woman.
Reading about this is a breath of fresh air for people who are looking for help with autism. Thank you for your advocacy I too am sharing the same goals as you are. (my apologies for the weird name I’m doing it for the benefit of toys designed for therapy in autism if you could please visit my link tnomeralc web design toys for further info)
California has a crisis of disabled and elderly dying and abused in out of home placements like nursing and group homes. Yet, there are families out here who are WILLING to care for their family members at home, which saves money! It’s cost effective! For example, If you go to YOU TUBE and look under kgaccount or type the words: autism seizures… or autism and self injury, you will see an American family was told it would cost the state of california over 23,000 a MONTH! to manage their severely autistic son due to his complex behavioral and medical issues. So, instead of an out of home placement, they keep him home and make the sacrifices needed, all while SAVING the government money by keeping him home. Shouldn’t families like this receive at least support without all the red tape? Look people…it’s not hard to figure out…by supporting people in their homes. the government is saving money so why the hell is arnold schwarznegger cutting IHSS services? Do you want severely autistic populations to go back into institutions that cost upwards of one million a year in some of these hard cases? Every American should support the care and protection of severely autistic or disabled or elderly populations in their homes when the family is willing to do it…these families need support. Wake up Democrats and Republicans. You obviously don’t get it. Please try.