Community over Cacophony: Going on a Walk

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.

Thank you to the students who've been helping out with this; it means a lot.

Amaral, D. G. (2011). The promise and the pitfalls of autism research: An introductory note for new autism researchers. Brain Research, 13803-9. doi:10.1016/j.brainres.2010.11.077


M said...

i'm always confused by the various autism groups, knowing what to think of them. i tried to research autism speaks and found so many different opinions...many for, many against, that i couldn't figure out what to make of it. it's a wilderness! every group seems to have fervent supporters, rabid haters. aahh! i'm always wanting to educate myself about these things, but find myself more confused than educated.

which is why i love your writing, i always appreciate your take on these issues. you're one of the ways i orient myself on some of the big picture discussions.

K- floortime lite mama said...

I love that you guys are walking for Autism Speaks
I have mixed views on them though on the whole I think they are doing good work

KWombles said...

Thank you, M. There's so much buzz out there that it is hard to know where reality lies with the various autism organizations. We have to wade through it all the best we can and hope that we can get a reasonable approximation of the good and the bad.

I know that today, my kids and hundreds of other kids had a fantastic day, and that fantastic day will be represented on Autism Speaks' fundraising allocations. It's a glimpse, for me, of the reality of how many is spent and the benefit of doing it that way. Yes, it was fundraising, but it was absolutely community building, supporting and creating awareness, too.

K-, thanks; I would agree with that assessment of AS. They are doing some good work, but some of the things they've done in the past show that there's a need to work to increase acceptance and appreciation and sensitivity towards autistic individuals.

Niksmom said...

Great post, Kim. I think it speaks to so many of us who have mixed feelings...who remember the offensive debacle of "Autism Everyday" (I still feel ill when I think of that) but who also see the incredible efforts being made to help states enact insurance legislation to help families with autism. It's a hard thing to create that balance. Harder still for any organization the larger it gets.

I am glad you supported the walk this year; it sounds like you had a good time, too. :-)

KWombles said...

Thanks; I did; it was a wonderful experience; so much work goes into these walks, and I got the chance to be a part of that.

I'm fixing to write up today's post on the walk itself. :-)

kathleen said...

I echo "M". you do make it all understandable...and even when you don't agree-you manage to find something positive. Bravo. :)