Autism Awareness Month
Dr. Temple Grandin and some of her students.
Dr. Temple Grandin marked Autism Awareness Month by doing this interview with Colorado State University doctoral student Ruth Woiwode. They talk about both livestock handling and autism, and it's a very interesting discussion. Dr. Grandin emphasizes the need to challenge autistic kids, to push them out of their comfort zones without surprising them.
Doors: a silent animation I made for Autism Awareness Month
A couple of days ago, my friend Jennifer, who keeps a great blog called Teaching the Boy, initiated a conversation with me about my generally negative impression of Autism Speaks. I decided to put together some of the things I said there with "Doors," a silent animation that I made to help sort through my own complex feelings about Autism Awareness Month, something I have felt silenced by.
Ultimately it's less that I think Autism Speaks is bad than that I think it represents the interests of people who have kids with autism rather than people who have it. That's not a bad thing, but it's not who I am or who I care most about. I think the voices of adults on the autism spectrum are underrepresented and devalued.
I would not say today that AS demonizes people with autism, as I did when I started thAutcast. I was impressed that they refused to take part in the Dr. Oz TV show unless it talked about autism as a whole-life issue, rather than focusing on just the cause. And they have put someone with Aspergers on their board. Of course, John Elder Robison is also a PARENT of someone with Aspergers, so he's also a part of their base. Autism Speaks has changed its public face in a positive way, and I have commended them for that.
These are things I would need to see happen in order for me to have a positive impression of Autism Speaks:
1. Order a complete audit done by an independent firm. Admit bad management of funds in the past. Reduce salaries. Become completely transparent about finances.
2. Make support to people with autism the focus of what they do. Make funding research secondary. Focus especially on the period of early adulthood, where no services tend to be available.
3. Expand the role of people with autism in the organization. Include adults with autism who are not parents on the board. Become a model for hiring people with autism-- many of the people who work there should be diagnosed.
4. Make visibility for people with autism a goal of its fundraising. Walks and blue lights do not tell people anything about what it is like to live with autism. Require that people who want to design purses, or give concerts, or write children's books to make money for the organization include people with autism in both the creative and production phases. The blue light thing has been especially galling, since Autism Speaks has shown no interest in how the 2012 change in lightbulb standards may hurt people with autism.
Stephen Colbert has to eat his cereal and catch his bus.
It's official: I hate Autism Awareness Month! I'm used to actually being able to keep up with what's new in the world of autism and making intuitive decisions about what to share with you. I'm deluged! Deluged with celebrities wearing dumb hats and selling purses. Deluged with inanity like what city is best to live in if you're autistic.
I'm blinded by the blue light.
BIG OFFICIAL NEUROTYPICAL AUTISM is speaking so loud that they drown out the voices of the people I'm interested in right now.
I've had to go on a brief vacation to the Overlook Hotel. It's hard to navigate, but quiet and very beautiful. Fortunately, they've added internet access (entirely wireless!) so I'll be sending you updates.
If you want autism news for the next couple of days, you'll have to visit the Facebook page.
This website is haunted by special interests.
And it's Friday.