Saturday, April 2, 2011

Community over Cacophony: Going on a Walk

Crossposted on Countering yesterday (today was the walk; will be following up later)

For those of us who've been on this journey with autism for awhile, it comes as no surprise that research into autism has been increasing at a rapid rate the last couple decades. It's worlds away from what was known when our family first dealt with the word autism at a personal level, and that is a good thing. It's a really messy thing, though, as there is not only an abundance of research being done (some good, some bad), there are autism sites out the wazoo for families to get information from (some good, a lot bad), and there are lots of folks promising magic cures and products that, if taken for a lifetime, promise to normalize autistic children.

The best way out of the thicket of autism woo and nonsense comes through the research; we need good quality research that ever increases its scope and moves towards what therapies best help autistic individuals achieve as much independence, functionality, and adaptive coping skills as possible so that they are able to reach their potential and live the kinds of lives they want to.

Research has grown from a rate where one could almost reasonably hope, with some dedication, to keep fully abreast of progress to a rate where no one, regardless of time and energy, could possibly keep up with it all. According to Amaral (2011):

This increased impetus for autism research comes in the midst of an ongoing process that has brought autism out of the darkness of psychiatric institutions onto the covers of major news magazines. Much of the credit for the increased research is due to the dedicated advocacy efforts of parents of children with autism throughout the world.

Parents continue to be vocal and often ferocious about the kinds of research they want to see done, as do self-advocates. This passionate reaction to how research dollars are targeted has the community often divided into pro-Autism Speaks camps, anti-Autism Speaks camps, pro-biomed, pro-vaccine studies, pro-environment, pro-genetics camps, and undoubtedly dozens more camps that we could get riled up at and create even more divides amongst us.

One of the largest providers of research dollars from the private sector is Autism Speaks. One of the most hotly contested autism-related organizations is, no surprise, Autism Speaks. Everyone's got an opinion on it, and it can create divides in the online community. There's no doubt that the organization pays out a lot on salaries and fundraising; there's also no doubt they spend a lot on research. There's also no doubt that some PSAs have been oh-so-bad. It's a complicated, messy organization with competing interests and mixed reception in the online autism community. I believe that it's an organization that is so large and so well-supported that it's not going away and no other grassroots organization will be able to overtake it. It's important to work with it, within it, to push for greater awareness and acceptance of autistic voices, of working to shift research dollars towards therapies that benefit people now.

Some of the posts on my facebook wall, with my diverse mix of friends (many of whom are on the directory) reflect this mixed bag relating to Autism Speaks. Some hate Autism Speaks, some dislike it, some are eh about it, some support it, support the blue, support the autism awareness, support Autism Speaks completely.

I respect all opinions on this matter, even those that shift, like mine has as I've become active in my community to encompass an accepting approach of diversity: diversity of neurology, diversity of opinion, diversity period.

And that's why I've worked with the local walk committee to organize this year's autism walk. That's why I've worked with my college's student population to create a team, fundraise, and increase awareness and acceptance (and appreciation) of autistic individuals. These volunteers are wonderful, caring, incredible people who've worked hard to create a fun day for autism families. It's why tomorrow my family and my students (and students from the psychology courses) will be at the walk. It's why my husband and son and student volunteers (and I) were there today setting up for tomorrow (crossposting this 24 hours later; we are home from the walk).

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