Wednesday, March 10, 2010

Autism Speaks: why the revolt?

On Facebook, I am a fan of Toys R Us. They posted today about donating at their stores to Autism Speaks and receiving a reusable tote bag designed by an autistic artist. It caused an uproar and reminded me that lately, it seems that there is a backlash against Autism Speaks for the way they spend their money. Then, I found this:

Is Autism Speaks Mis-Spending Its Money? Your Opinion Requested

Thursday September 10, 2009

Autism Speaks is by far the largest organization in the US - and one of the largest in the world - dedicated to autism-related research, funding, and related activities. They are also one of the most controversial, for a variety of reasons all of which are laid out in an article entitled "Why autistic people don't like Autism Speaks."

You can read the Examiner article (or search this site for my perspectives) if you want to read the history of Autism Speaks. What's new in the Examiner article, though, is a review of Autism Speaks' tax returns -- which, at least to author Marc Rosen, are shocking:

Autism Speaks has released its 2008 990 tax return form, which is the primary source of the following information regarding its finances. According to their 990, Autism Speaks has 36 employees who were compensated over $100,000 this year. The highest paid employee listed, their Chief Science Officer, Geri Dawson, was compensated $644,274. That's better than most people make in fairly good positions at Fortune 500 companies! ...

In total, they spent $17,756,876 on employee salaries, pensions/401ks, benefits, and payroll taxes. By contrast, their grants to individuals and communities totaled a paltry $66,670, not even a drop in the bucket compared to their total reported expenditures. Based on that information, it is clear that Autism Speaks does very little with their money to help autistic people and their families...

Having worked in the non-profit world all my life (mainly for major museums and universities), I have to say that I'm not a bit shocked. In fact, I'd say that executive salaries, fundraising and general operating costs for most of the non-profits I've been involved with are similarly high. I'd also mention that, in many cases, executive level pay is many times more than the pay offered to mid-level employees.

I have never, though, worked for a philanthropic foundation - and a large part of the Autism Speaks organization is all about giving away grants.

And I've never been on the staff of an organization whose focus is on supporting individuals and families coping with a particular disorder - and that really is the purpose of Autism Speaks.

Like some of you, I've attempted to contact Autism Speaks directly and never gotten any further than the media relations person. I've spoken with Geraldine Dawson who heads the organization, but only prior to her appointment.

For those of you who are familiar with Autism Speaks, or know more than I do about the inner workings of Autism Speaks-like organizations -- should we be shocked? Are these tax revelations just par for the course, or are they upsetting indications of a bigger problem?

Share your thoughts!

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