KODIAK — I was happy to see in the April 26 edition of the Kodiak Daily Mirror that preschool teacher Amanda Sandford identifies “[initiating] interactions with autistic students, [negotiating] sharing activities between autistic students and other kids and helping them develop an understanding of other children” as goals for teaching autistic children in an inclusive classroom. As someone who attended Kodiak Island Borough School District schools K-12 with an undiagnosed case of what used to be called Asperger’s syndrome, I am immensely relieved that there is now help available for students that I never got. However, I am deeply suspicious of a recommendation made by Ms. Sandford’s fellow teacher, Calista Pruitt. I’m sure that Ms. Pruitt means well, but you would be hard pressed to find an autistic person who has anything good to say about Autism Speaks!

Autism Speaks is certainly visible and they talk a good line, but if you dig into what they actually do from the viewpoint of the group that is supposedly being spoken for, you’ll see a wide gap between publicity and reality.  

Autism Speaks offers what it calls “Family Service” grants. The financial information the organization provides to the I.R.S. shows that 1.6 percent of its budget goes to these grants.  On the other hand, almost half of its budget goes to lobbying. What do they lobby for? Autism Speaks encourages the parents of autistic children to view themselves as victims of a disaster.  They characterize autistic children as kidnap victims, as if the real child, the child the parents imagined, had been stolen away and a fake child, the autistic person who really exists, had been substituted. Imagine that! The organization that claims to speak for autistic people treats us with the same superstitious disgust as my peasant ancestors who called their autistic or otherwise atypical children changelings and insisted that their “real” children had been stolen by the fairies!  And, the legislation they lobby for is based on this viewpoint. 

In addition, they are so desperate to find a cure — a way to make autistic people not exist anymore — that they devote almost a third of their budget to this end, even throwing money at ridiculous notions such as vaccines causing autism; they only stopped supporting this idea well after it had been disproven by science. 

I also note that Autism Speaks has two autistic board members. That’s two out of 26 — 1/13 of the official voice of Autism Speaks is autistic. And for the first two thirds of the organization’s existence, there were no autistic board members at all.

But the worst thing Autism Speaks does every day, from the viewpoint of an autistic child, is proceed from the unspoken, unexamined assumption that autistic people never grow up. I’m actually lucky that I went undiagnosed due to being “high functioning,” that is, problems I had due to being autistic were not obvious or not obviously assignable to autism as it was then understood. The mindset expressed by Autism Speaks is widespread and of long standing; I certainly don’t recall people talking like Ms. Sandford when I was in school. I got no help, but at least I never got pigeonholed as a perpetual child whose life must consist of nonstop behavioral management, with no training for adulthood. But many people were, and still are, treated that way, because who we are as children is all that seems to matter to Autism Speaks and their ilk.  

The focus, as I said before, is really on the parents as the victims of a bait-and-switch by the universe or the evil vaccine pushers or whatever the latest desperate explanation is. It’s on the parents who feel cheated because they didn’t get the child they wanted. It’s never on us as people.

Even autistic people who can’t talk can still communicate, and the online world has been a Godsend. I encourage the parents of autistic children to connect with autistic adults in organizations such as the Autistic Self Advocacy Network. You’ll find so much more beyond the limitations imposed by Autism Speaks.  As your children grow toward adulthood, they can learn self-advocacy, self-care and support in being themselves in a world that is set up for people who are not wired like them.

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