Wednesday, September 23, 2009

The whole truth and nothing but....

Guess who I talked to today? No really, you'll never guess. Oh alright, I'll tell you.

The CFO of Autism Speaks.

Yep, the little blog that could made it's way to the eyes and ears of some people here and there and Mr. Thomas Hetzel gave me a call on Friday. I'm glad I missed the call though, because the weekend gave me some time to really pour over the 990. (Click here if you want to see it yourself.) I'll be honest, it's a lot of accounting stuff that's wayyyyyyyyyyyyy over my head. But from reading the document, there's a few things I know.

$3.9 million in office expenses is unacceptable.

$2.4 million in printing services? Not ok.

Geri Dawson, the Chief Science Officer referenced in The Examiner article as making in excess of $600,000/ year? Good news! It's not true. What is true is that she makes four hundred and something and she got $270,00o in moving expenses.

Nope, not a typo.


And yes, my dear readers and supporters. I *DID* ask the question, "Did you put every article of clothing in it's own limousine to get it from one side of the country to another?"

Mr. Heltzel was very nice. He listened patiently while I asked my questions and at most times, I think was at a loss for words. What I can tell you is this: I got a lot of canned answers. When I questioned Autism Speaks' office on PARK AVENUE (not just downtown Manhattan, but Park Avenue) I was given the standard answer. "We need to have a presence, we need to establish relationships with people in the city of New York, this gives us great visibility, blah blah blah blah blah."

Office expenses? Well, you know that encompasses a lot more than just paper clips and staples. And yes, dear friends... I was sure to make the point that on this level, as a volunteer we have to SOLICIT DONATIONS to get things like paper clips and tape so who in God's name is spending $3.9 million dollars a year, because it's NOT us out here in the field. And to be honest, if I were making a 6 figure salary, it probably wouldn't bother me nearly as much to be soliciting for paper clips!

I asked a lot of questions and he answered in the best way he could, being careful I'm sure not to end up in this very blog you are reading.

So let's cut to the chase.

Here's what I know. Autism Speaks needs to trim the fat. A LOT. Autism Speaks needs to re-think the 4 fold, high gloss, full color , premium cardstock invitation to the kickoff. I'm not sure if the full color graphics in the 100 day kit make the information more important, but I'm guessing if we started printing that in black and white the parents would be just as happy with the information and less frustrated that their fundraising efforts go to such an excessive luxury as color printing.

Here's what else I know. The Examiner article referenced the fact that, "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."

And that's true.

Sort of.

True: Autism Speaks wrote $66,670 in individual grants.

Also true: Autism speaks wrote $865,000 in community grants. And Mr. Hetzel was nice enough to explain to me that for tax purposes, they must be listed separately, but things under community grants include a summer camp in Colorado for autistic children, and community education and awareness projects. And lets' not forget the $162,000 to adult services which aids adults with autism who are, for lack of a better word, misplaced in the world.

My point is, I'm pretty sure families are benefitting from those grants, too.

One more thing: Autism Speaks ALSO paid out $68,000 in "relief" grants for autistic families and adults who needed clothing, shelter, hurricane relief, etc.

Oh wait, I almost forgot: the $30 million + to science research in the United States alone. (seriously I was adding it up line by line and stopped at $20 million).

So can Autism Speaks do a better job doing the very best with the money we work so hard to raise? Absolutely.

But can any of us NOT say the same thing? I'm pretty sure my husband wishes I would stop going to Hobby Lobby so often or lay off the pedicures for awhile so we can get ahead on bills.

Hey, nobody's perfect.


Lisa Jo Rudy said...

Wow, April - well done! Can't believe you don't have any comments yet; will promote this piece on

Sounds like my blog and yours are pretty much on the same page. Yes, big non-profits spend too much on themselves, but that doesn't mean they're evil, dishonest, or even surprising.


Lisa (

jypsy said...

Think you could get him back to explain their horribly offensive, dehumanizing, unscientific and unethical new video "I am Autism"? How much hard fundraised money it cost? How he cannot feel ashamed by it? How much lower we might expect them to stoop?

Anonymous said...

Autism Speaks mission is to “prevent and cure autism”. All types of autism…low and high functioning.

Sounds familiar?…….like Hilter’s and the Nazis goal for a “superior” race. To eradicate the Jews.

Diversity is a GIFT to the human race. People on the autism spectrum deserve to live in this world, too. To be treated in a kind, respectful, dignified way.

To “cure” an autistic person is to remove them from being.

How will a prenatal test tell if a fetus is low or high functioning on the autistic spectrum? Most probably what will be is the marker for the autistic gene will show up….so future wonderful, gifted people will never come to be.

The “cure” will be a death sentence for human beings.

Autism Speaks will NEVER get my support. I will NOT support the mass murder of innocent people.

-M. King

April said...

The "I am Autism" video was in no way shape or form financially supported by Autism Speaks. Not one dime of AS money was used in the production or promotion of that video. Regardless of how you feel about the video (love it, hate it), the only thing AS has done with the video is spread the word about its existence in the hopes that at least some families would find it helpful.

jypsy said...

May I ask who your source was for that information? Thanks...

April said...

Certainly, Jypsy ~ Kathy Streng, Regional Director with Autism Speaks and she got the information confirmed from a "higher up" within the organization.

jypsy said...

I'm sorry, I don't believe the "not one dime" story. Given that Autism Speaks hosted the video that appealed for video clips and the "I am Autism" video itself on their website, they would have paid for the bandwidth they used. As it was in their Press Release, it's hard to believe that no paid staff were in any way involved with anything to do with this video. The video clips themselves were sent to Autism Speaks, not directly to Mr. Mann and/or Mr. Cuaron. Obviously whatever they spent, even had it been millions, would be nothing compared to what this kind of propaganda could cost my sons.

Dr. Geraldine Dawson, an AS "higher up" falsely claims that Autism Speaks has removed the video from their website so I'm afraid I'm not going to put much stock in the "not a dime" claim from an anonymous "higher up" at Autism Speaks.

Thank you for the information.

Lee said...

Time to get off the AS Band Wagon and move to something more local in nature, AS puts forth a national agenda without any thought to the issues throughout the nation. Rural areas face many more challenges than do urban and suburban ones. I cannot support a nation plan without national application. Support YOUR communities, understand the needs of your communities, build not only a breath of awareness but a depth of awareness and understanding. The awareness campaigns of AS have done little to have mainstream Americans want to embrace children and families with ASD, rather they have scared the heck out of them. Fear is not a useful tool when trying to develop understanding, pity is not what families are wanting, they only ask for a level field, not one filled with obstacles to overcome, systems that are un-navigatable or advocacy groups that have lost touch. SUPPORT YOUR LOCAL COMMUNITY.

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