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Autism Speak’s Walk

March 18, 2010

On March 9, I had the opportunity to attend an all-day Autism conference, called the Autism Extravaganza. Temple Grandin spoke for almost ninety minutes and then spoke briefly during the luncheon. The Autism Speaks Texas Walk Director and the Autism Speaks Director of Research for Environmental Sciences also spoke. The day concluded with two PTs providing a very informative and helpful session on sensory integration. Region XIV put on the conference for free and opened it to all community members; the luncheon was the kick off luncheon for Walk Now for Autism Speaks and served as a fundraising effort.

I would like to thank Region XIV for their efforts on this conference; it was well worth the time and I appreciate the admirable goals behind the day, although I will quibble quite seriously with how Autism Speaks spends the money it raises.

Autism Speaks brings in a lot of money, and how they use it matters. The information (and misinformation) they provide matters just as much. I sat with around 800 other people, educators, support service personnel, healthcare professionals, and parents and listened while some of that misinformation was spread to what I have to presume are for the most part individuals who might not be aware of what was accurate and what was not.

One area not addressed by the Autism Speaks presenters was how the funds raised are actually spent. The impression left was one of all the donors’ funds going towards research. In 2008, Autism Speaks took in gross receipts of $69,288,848. They have 258 employees and 350,000 volunteers. In addition to their gross receipts, they had investment income in the amount of $403,930. They paid out $71,095,217.

Out of these funds, Autism Speaks gave out $27,593,390 in grants. However, they shelled out more to pay their employees ($17,756,876) and fundraise ($14,178,307). That’s right. Autism speaks shelled out almost as much money on fundraising as it did to pay 258 people.

In other words, in case you’d missed it, Autism Speaks gives less money to grants for research, community education, and community activities than it does to pay its people and fundraise.

With a CDC-estimate of 730,000 autistic individuals under the age of 21 in the US alone, and many of the parents of younger children desperate to help their children overcome the deficits of autism, Autism Speaks positions itself as a lifeline for these parents and has a responsibility to spend more than the 39% it collects on research and on helping families and individuals now.

Hundreds of individuals concerned about autistic individuals will rally around for the walk for autism, and I do not, as a parent to children on the spectrum, begrudge them their efforts. Their goals are admirable and their desire for fellowship a wonderful thing. Autism Speaks has an obligation to use those funds raised more efficiently and more effectively, to make a real difference now in the lives of people with autism and their families.

 So, by all means, walk for autism, make it a day of joy and celebration, but don’t walk for Autism Speaks until it proves itself to not be about the money.*
*Update: in looking at other non-profits, I can see that this was a  post based on incomplete information on how these organizations operate, and that under the aegis of fundraising, a lot of great events are put on. They actually do very well in comparison to some organizations, and they are the  #2 funder of autism research in the country. It is about the money, but it’s about the money because money helps fund research. It isn’t perfect, but it is a responsive organization and one I can not only walk for, but volunteer proudly for. How’s that for a sea change?

  1. March 18, 2010 6:57 pm

    >They irritate me for the same reasons, and then some. Case in point: We walked into Toys R Us yesterday and they had those Autism Speaks posters with the little puzzle pieces everywhere, and the phrase, "Autism: Help Solve the Puzzle." And TH, who is (a) autistic and (b) can read, read that. And asked me, "What does that mean." And I poked him and said, "I guess that means you're a puzzle." He thought that was pretty funny.

  2. March 18, 2010 9:01 pm

    >Good way to handle it! I suppose the best way to look at it would be to decide we're all puzzles, but it just irks me. My children are no more puzzles than I am or other children.And they don't need to be solved. Appreciated, assisted, loved. But not solved. They aren't missing any pieces, either. Any more than their daddy and I are, anyways.Plus, if I were going to talk about someone being shy a few puzzle pieces, I'd reserve it for my siblings, like a good sister should. Hah, couldn't resist–my youngest brother was over for a visit today. 🙂

  3. March 18, 2010 9:41 pm

    >@Kim: Either I am missing part of the post or your numbers are wrong. You said:Out of these funds, Autism Speaks gave out $27,593,390 in grants. However, they shelled out more to pay their employees ($17,756,876) and fundraise ($14,178,307). That’s right. Autism speaks shelled out almost as much money on fundraising as it did to pay 258 people.27 Mil is more than 17 Mil, unless you meant to say they gave out 17 mil in grants. Or am I missing something? (possible, definitely)

  4. March 18, 2010 9:58 pm

    >Autism Speaks is about the only thing anti-vaxers,and neurodiversity types can agree on. It is pretty much a given the main thing these people care about is lining their own pockets,and exploiting autistic children to do it.These "people" are the lowest of the low.

  5. March 18, 2010 10:01 pm

    >@Dawn,The grants were 27 million.The salaries were 17 million.The fundraising expenses were 14 million.Total to salaries and fundraising was over 31 million compared to the 27 million that went to research.Out of the total money raised, 39% went back out as grants. The rest went to salaries, fundraising and other expenses.

  6. March 19, 2010 12:22 pm

    >Thanks, Kim. I thought maybe I was misreading, but wasn't sure (and I have mis-typed numbers too many times). I appreciate the clarification. 🙂

  7. March 19, 2010 2:18 pm

    >@Roger,Huh, you learn something new everyday.@Dawn, no problem; it never hurts me to go back over the numbers and make sure I have it correct. The original post had more of their expenditures in it, and I was paring this down to 600 words for my local paper's guidelines, so another run through was a good thing to do. :-)Some of than fundraising, by the way, if you missed the longer version, entailed spending 1.7 mil or so on a concert for which they raised 140 grand. How's that for fiscal responsibility?

  8. April 22, 2010 7:03 pm

    >"The day concluded with two PTs providing a very informative and helpful session on sensory integration."Sensory integration is not an evidence-based intervention and adds to the misinformation promulgated by these "conferences".

  9. April 22, 2010 7:12 pm

    >Kyle,Fair enough, but it was the only part of the conference not geared to get money out of someone. It was, nonetheless, a well-done and interesting presentation. I note in a recent post that sensory integration has not (at least as of 2005) been scientifically validated.

  10. May 7, 2010 4:01 pm

    >*on the fence*

  11. May 7, 2010 10:18 pm

    >I can understand that; it's a hard call. On the one hand, it is still a substantial amount of money going to research. It's also the opportunity to interacti with a large number of families dealing with autism. These are hard things to turn back from. The majority of people who support Autism Speaks are unaware of the way they spend the money raised, and I have no problem with individuals supporting Autism Speaks, whether they are uninformed or whether it's an informed decision that 39 cents on the dollar is goos enough for them.

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