Wednesday, August 17, 2011

Things I Don't Discuss With The Autism Community - Part 1

There are two things that I make it a point not to discuss with my friends in the autism community because they are too divisive. One is Autism Speaks.

People have lots of things they dislike about Autism Speaks. The one that I hear the most is that they waste too much money on salaries for their executives, travel budgets and their offices on Park Av in NYC. These things, I'm not sure I object to. Their salaries seem extravagant to someone on a middle class American's income, but that's comparing apples to oranges. How much do they make compared to their peers who do similar work at other non-profits? At the American Cancer Society or the United Way? Nonprofits are companies too, and they have to offer competitive salaries to get the best employees (even though the people working there should be there primarily because of their passion for the cause). Autism Speaks also funds lots of really worthwhile research and sponsors events that help build a sense of community that I think is vital for the parents of autistic children.

The next objection to AS that I hear less often is that they operate from the perspective of the caretakers of autistic people and do not represent autistic people themselves. Autism is a condition that does not preclude a successful career. There are plenty of people with autism that are scientists, yet until 2010, there were no members of the board with autism spectrum disorders and even now there's only one out of 34 members.

Many autistics themselves are critical of AS treating autism spectrum disorders as disease. Many adult autistics see their autism as simply a big difference between themselves and the heurotypicals in the world. I don't know if I agree with that, but it's not my place to tell an autistic person who holds that belief that they are wrong and that they are broken and should be fixed.

Finally, and this is an ironic one that will lead into Part 2, Autism Speaks has lost several scientist board members because they continue to fund research into vaccines as a possible cause of autism. I know that a lot of parents will disagree with me, but I do not believe that vaccines cause autism. I believe that the scientific establishment here in the US and in Europe have thoroughly investigated this potential connection and have disproven it.

Considering these things, I don't know if I personally support this organization. But what I do know is that there are other charities that I do support, like Apps for Children With Special Needs, who gave Joseph his iPad. But like I said, many of AS's functions are important for community building. For this reason, Kristy and I will be participating in Walk Now for Autism Speaks this year, but we're not walking for Autism Speaks, we're walking for our son, and for our friends with children on the spectrum and their kids. We won't be soliciting donations, if you want to make a donation to a charity, please visit

This is the only time I will be talking about Autism Speaks, so I hope it was thought provoking. :)


  1. Thanks! I feel the same way. Great post very poignant.

  2. Hi Joe!

    My name is Keri Porter and I too have a son (age 8) with Autism! It looks like you are very active in the Autism community and I was hoping you could help me. I am the parent advocate for The Sensory Learning Center of Toledo & C-bus. We offer a 30 day program to help children with sensory issues. I am trying to get the word out about this amaazing intervention with the hopes that parents (like ourselves) will have another resource to add to their list. If you would please contact me with any e-mail is! Thanks so much! PS...your son is adorable :)

  3. Just blog hopping and happened to find yours. Don't mind me as I rummage through the drawers. . .

  4. HI Im new over here and just found your blog through claire and puppy. Personally AS is such a non issue for me, I don't think I have ever even thought about it. Very interesting post because now I am going to have to figure out how I feel about it :) anyway, hello.