Autism Speaks...Shame on You!

I know this is really supposed to be about domestic issues, but as I may have mentioned, I'm a part-time WAHM who works with special needs kids. Most of those kids have autism, so I like to keep up on recent research and news within the autism community. This post is addressing a very recent and appalling issue.

First some background: Autism Speaks is a charitable organization founded by Bob and Suzanne Wright. It was created when their grandson was diagnosed with autism (their daughter, Katie Wright, is his mother). The goal of the organization is to further autism research in search for effective therapies and/or a cure. You can learn more about this organization here: www.autismspeaks.org.

While this organization is very large, has the support of a lot of prominent people, and has done good work, there are some major problems with their philosophies. Last fall, there was a major family blow-out in response to Katie Wright's appearance on Oprah. Katie made reference to the fact that she believes that vaccines caused or at least contributed significantly to her son's autism symptoms. The general party line among researchers right now is that vaccines do NOT play any role in autism (that is a post for another time, though), and Bob and Suzanne Wright issued a media statement following Katie's appearance saying 'Katie Wright is not a spokesperson for Autism Speaks and we do not believe vaccines play any role in autism.' (That is not a direct quote, merely the gist of what was said.) Subsequently, it was known that Katie had trouble with her relationship with her parents for awhile.

This situation appalled me, because Autism Speaks was founded based on Katie's son, yet Katie's opinions about what caused/augmented her son's symptoms was not only unimportant, but FALSE. How could parents come out and say such a thing? Of course, the likely reason is that if major organizations do not uphold the current party line, they will lose support and funding, which they do not want to do. While there's something to be said about 'falling in line' for this reason (continuing funding in order to do more good), there's something much more important about being willing to stand up for the minority. In this case, the minority happened to be Bob and Suzanne's daughter, and they couldn't even stand up for her.

It's been about six months since that occurred. But very recently, Autism Speaks has been in the media again. This time, a young (14-year-old) girl with autism has started her own parody website, encouraging people with autism to speak for themselves. Her message is that people with autism do not have to be silent, but should stand up and fight for cures and therapies and acceptance on their own. Although the site never achieved incredible popularity (the girl stated that she received about one hit a day, and I never heard of it until this all came out in the media), Autism Speaks took great offense to it.

In fact, Autism Speaks is now SUING this 14-year-old girl for copyright infringement, loss of traffic and revenue (they are claiming they lost up to a million supporters), and other charges. How incredibly ridiculous is this?! Autism Speaks, an organization that is supposedly furthering the voice of those with autism, will not let a person with autism speak for herself. They seem to think they know better what autism is about than any family with a child with autism, or any person who herself has autism. This is absolutely outrageous.

So, Autism Speaks, listen up! Your charitable organization is now doing more harm than good. You aren't allowing anyone who actually experiences autism on a daily basis to speak up about what is really needed in the realm of autism research. Your organization is more political than helpful, and should seriously reexamine its motives...or disband.

If you are as appalled by this as I am, leave comments or go to their website and send THEM comments! Let everyone know about this terrible battle over the voice of someone with autism. Thanks for reading.