Autism Speaks. It’s a Living.

Autism Speaks recently announced on their website that due to the poor economy they have to “postpone” grant making and giving for 2009. Yes, this charity that hauled in a reported $68 million in funds last year has fallen on hard times. Sad, really, on the surface. But dig deeper. I ask you to consider the following information, taken straight from this organization’s IRS 990 form on their own website:

Geraldine Dawson, Chief Science Officer – Salary: $669,751
Mark Roithmayer, President – Salary: $400,413
Peter Bell, Executive Vice President – Salary: $265,981
Glenn Tringali, Executive Vice President – Salary: $255,256
Alison Tepper Singer, Executive Vice President – Salary: $201,942
Amount Spent on Travel: $2,873,667
Credit Card and Banking Fees: $989,344
Premiums: $1,452,807
Management Fees: $2,038,024
Advertising and Promotion: $2,108,778
Temporary Help: $718,686
Income: $65,826,829
GRANTS PAID OUT: $27,593,390

Now I ask you, does this look like an organization that is suffering? It looks, to me, to be an organization that cares more about highly paid salaries, posh offices on #2 Park Avenue in New York, pricey fundraisers and getting it’s name in the newspaper. They seem to exist solely to pay salaries and throw parties.

But hey, they’ve fallen on hard times. So can someone please tell me why the first thing to go is the grant making and giving -- the one thing that they claim as their #1 mission? To give grants to find a cure for autism? And don’t they seem a little top heavy to you? A $700,000 salary?? Four Executive Vice Presidents?

Autism Speaks is gaining quite a reputation in the autism community. The come into a town near you with their sweeping public relations teams, hold their annual “walk for autism” dog and pony show, sucking every last dollar out of the community, only to take it back to those posh #2 Park Avenue offices. While it may seem like a noble cause, the main result of Autism Speaks’ tactics is that LOCAL organizations that actually HELP people in your very own community by providing services and supports end up begging for funding. How long are we, as an autism community, going to close our eyes to what’s really going on here? The big corporate New York “show” organization is going from town to town like an infestation of locusts sucking out every last dollar that they can in order to pay 68% of its income in salaries and overhead.

The average corporation or Joe on the street doesn’t have time or inclination to investigate the charity. After all, they’re so well known and have such a bevy of Hollywood stars behind them, they have to be legitimate, right? Well, I’ll leave that for you to decide, but I urge you to look at their official IRS 990 form, right on their own page, and do a little bit of math. Maybe you will open your eyes to reality, and take those walking shoes off, give to local organizations, and tell Autism Speaks to walk off.

Many adults living with autism have done just that and have even gone to the extreme of protesting their walks and events. Jerry Seinfeld, one of their performers, was confronted by an adult with autism, http://www.youtube.com/watch?v=iH2otGcEfYU – in which he was completely blown off by the star. Their controversial “I am autism” video controversy was even recently covered by Time Magazine: http://www.time.com/time/health/article/0,8599,1935959,00.html.

Dozens of websites and blogs from around the globe are condemning Autism Speaks for their spending habits, their scare tactics and their treatment of the “neurodiverse” community. Their Washington, DC, New York, Ohio State University, and several other locations for the annual autism walk have been picketed and protested by individuals with autism as well.

Even when Autism Speaks was in its infancy, the co-founders of the organization told their daughter publicly (the mother of the child with autism who was the impetus for starting the charity) that she was not allowed to speak for them in any capacity. The story ended up on the front page of the New York Times: http://www.nytimes.com/2007/06/18/us/18autism.html?pagewanted=print


With a history mired in controversy and upheaval, Autism Speaks has been at the Center of debate in the autism community for quite some time, but now even die hard AS supporters are starting to see the light. I used to be one of those supporters.

Pittsburgh was the very first walk for autism in the country, and I was involved from the get-go. I did their newsletters, coined the whole “Walk Talk” concept, produced and edited videos for them, and helped raise thousands of dollars for this organization over the years. Luckily, someone opened MY eyes to the truth, and I stopped supporting them and began trying to educate others on how they actually spend their money.

And, hot off of their website from today:

Announcement of Budget Reductions for Continuation Years of Autism Speaks Research Grants

In view of the serious challenges that the economy is facing, Autism Speaks made the difficult decision to institute budget reductions of 15% for all grant payments in FY2009. This includes most of the grants awarded in December 2008 as well continuation budgets for grants originally awarded prior to December 2008. Thus, if your second- or subsequent budget year commences in 2009, a 15% reduction will apply and you will be asked to submit a modified budget for the remaining years before the continuation award will be activated. Please note that Pilot and Fellowship grants are not subject to this reduction. These changes were instituted to continue funding as many research projects as possible and we regret any difficulty that you may encounter because of the reduced budget. "

I wonder if the staff took a 15% wage reduction? So does this mean that projects that were already promised funding won’t be fully funded? That this will result in layoffs and the research not being completed? Sounds like it to me.

I urge everyone to please take the time to read the IRS 990. The proof is in the pudding – right there in black and white for everyone to see. Don’t be a kool aid drinker – educate yourself and get the facts before you walk even one more step for this organization.


Cindy Waeltermann
Director, AutismLink

Source: Autismlink.com