Many people, including myself in the past, donate to Autism Speaks thinking that this corporation is the best vehicle to help support autism research and help those families who are financially crippled, who need respite desperately, who had to quit their jobs in order to care for their child, a family who may have gone through divorce because autism is TOO stressful on a marriage, etc. The physical and emotional toll is great on the entire family. Some parents have multiple children with this disease.
In about 2009 or 2010, I started paying attention to the organization that was getting all our hard-earned dollars.
John Elder Robison was the only person with autism on a board at Autism Speaks. He resigned from the Science and Treatment boards on November 13, 2013. Read his post here. In summary he said that he could no longer be part of an organization who would not listen to his counsel. He felt Autism Speaks needed to be an organization that helped people with autism and not an organization who sought to cure him of something that is his identity. I do whole-heartedly understand this point of view. Autism is a full spectrum disorder. My son lives in a state of hell and is at risk for being abused because he is nonverbal and cannot read or write. Local author Elizabeth Moon, a mother of a person with autism, posed this very dilemma in her book “The Speed of Dark.” If a cure was available, would you take it? I would love my child no matter who he was. If life could be easier for him, I would give him that cure even if that meant who he now disappeared. I do, however, appreciate that those people with autism who are able to share an opinion on that would not want to be changed. I respect the feelings of the families of those people who support them. It doesn’t mean there is a right or wrong point of view; we each have to make a personal decision about our feelings on this matter.
In March of 2015, Autism Speaks invited its 168,000 Twitter followers and 1.5 million Facebook fans to use the hashtag #AutismSpeaks10 to share how “AS has touched your life” to celebrate their 10th anniversary. Instead of receiving gushing responses on how their lives were helped, people with autism and their families took to Twitter to have a word-war with Autism Speaks saying that they don’t want to be cured and that they want their resources to making their lives better and not to “cure” them. In essence, Autism Speaks does not speak for them. Autism Speaks had delusions of grandeur if they expected people to respond because they have not helped many people at all. Autism Speaks helps itself. Only about 4% of the money you send to them actually goes to help them.
The Judge Rotenberg Center in Massachusetts is under investigation by the Department of Justice and the FDA for the use of torture (see page 84 of the United Nations Special Rapporteur on Torture). The State of Massachusetts and disability rights advocates have been working to shut this facility down. Even despite this information coming to light, Autism Speaks has allowed the facility to recruit new admissions from families seeking resources at their fundraising walks. If you don’t know or remember about this story, here is a clip from it and a link to the 26-minute story of someone who actually previously lived there and the reasons she was given shock treatments. (The individual has disabled embedding so this link will go directly to her YouTube video). I am warning you–this video below is awful to watch, but how one can support Autism Speaks when they support this center?
Show Me The Money
In closely examining the 2013 tax return Form 990 and independent financial audit, Autism Speaks took in a whopping $122,141,069. Of that, $15,300,709 went to research (or 12.5% of your money) and of that amount, only 1% goes towards research on the needs of adults with autism. Of that money, $5,532,344 went to projects associated with board members of Autism Speaks (or 36% of all grant money awarded). Families received only $4,631,690 (or 3.79%) of the money you gave to Autism Speaks. Advertising (for more of your dollars) cost you $52,229,994 (or 43% of their budget). Salaries took $18,771,965 of those donate dollars (or 15.3%) and $4,528,226 in benefits and payroll taxes (or 3.7% — as much as they give to families). Thirteen of their board members make six-figure salaries. See pages 9 and 10 on their Form 990 filed with the IRS.
The problem with the Autism Speak walks is that they do not give any of that back to the local communities. Money that people are giving to support people participating in that walk goes to Autism Speaks big machine. With state budgets cutting funding to people with disabilities in general, and is usually one of the first things on the cutting block because of horrible stereotypes of people with disabilities, money you give to Autism Speaks means they might lose those dollars if you only knew about their organizations. Local organizations usually are run by volunteers who draw no salaries and the majority of their resources going directly to helping in some way.
Board members have perks, too, like getting funding from Autism Speaks for their pet autism projects. Per Autism Speaks Financial Report of 2013: “AS has arrangements to grant a portion of the net proceeds of certain fund-raising events to partners. Amounts representing the partners’ share of net event proceeds as described below are reflected as grants in the accompanying consolidated financial statements.
Event Partner Grants
Speeding for a Cure The Gillen Brewer School — 50% of net proceeds
Atlanta Walk The Marcus Institute — 50% of net proceeds
Phoenix Walk The Southwest Autism Research & Resource Center (SARRC) — 50% of net proceeds
Westchester/Fairfield Walk Center for Autism and the Developing Brain at New York Presbyterian — 15% of net proceeds
Winter Ball for Autism New York Collaborates for Autism — 50% of net proceeds
The Atlanta Walk had net proceeds of $542,000, 50% of which was granted to The Marcus Institute, the co-founder of which is an AS Board member.
The Westchester/Fairfield Walk had net proceeds of $968,000, 15% of which was granted to the Center for Autism and the Developing Brain at New York Presbyterian. An AS Board member is on the Board of Trustees of New York Presbyterian Hospital.
The Winter Ball for Autism had net proceeds of $2,682,000 in 2013, 50% of which was granted to the New York Collaborates for Autism, the co-founder of which is an AS Board member.
Five members of the Board of Directors of AS and two management employees are affiliated with institutions that received funding from AS. At December 31, 2013, AS had grants payable and commitments to these institutions totaling approximately $5,532,344. During the year ended December 31, 2013, AS’s expenses included approximately $3,669,960 related to awards granted to institutions affiliated with an AS Board member or management employee. Certain members of AS’s Scientific Advisory Committee and Scientific Review Panel, which are involved in the grant appropriation process, are also associated with institutions that receive funding from AS.”
Why You Shouldn’t Light It Up Blue
We have enough “Autism Awareness.” In fact, it has moved into overkill to the point where people roll their eyes when they hear someone say, “My child has autism.” They see a child in a meltdown mode in a store because of some sort of sensory overwhelm and they shake their heads or mumble to another person in the store or share “looks” about bad parenting. People with autism who have the ability to express themselves do not like Autism Speaks. Parents who have had children with autism for awhile have learned about Autism Speaks and will not support them because of their lack of assistance. The “Light It Up Blue” campaign is a direct advertising campaign from Autism Speaks. When you buy a blue bulb from Home Depot, you are supporting them. The co-founder of Home Depot is a board member of Autism Speaks.
I would like to see more “action” come from this organization instead of raising funds to support themselves.
If after all of this information you decide you still want to contribute to Autism Speaks that is your business. All I want to do is inform people so they can make a more informed choice of where their hard-earned money may go.
My son Patrick. The center of my universe
Pbmom's Blog 
Girl, I love this article; I love you and Patrick more.
My ‘nephew’ (best friend’s little boy -we’re both only children) has severe autism – he will never speak unfortunately – global development delay, sensory problems and arachnoid cysts in his brain (and a few things more too). I have seen the battleso she goes through with support for her to be able to keep going (the cuts over here have been brutal)
But, we have excellent schools, and a socialised health care second to none IMHO. We worked out that one year of normal visits associated with my nephew’so au time would have easily bankrupted her. I cannot imagine doing this in a system like that in America.
To Have something like AS, who quite blatantly derive a lot of their fundraising from a) well meaning member of the public and b) predominantly autism families (because they think other families more ‘afflicted’ will benefit), then turn around and give paltry amounts to communitis and families, fund private pet projects and to spend 43% on “advertisting” (sorry I don’t buy that in totality – some of that HAS to have been pocketed by board members IMHO).
I think I threw up at the sickness of it.
I think the one thing that is telling; a lot of their ‘celebrity endorsers’ (How many community projects have those? ) are also like Jenny Mccarthy, who espouse the anti-vaccine rhetoric. To have aligned themselves with her and others of her viewpoint send’s a (witting or not) message of endorsement of her theory that Autism is a damage done by metal people who don’t know specifically what they are doing.
(I am not anti-vaccine. I will be honest on that point. When the lead article that sparked the anti-MMR rhetoric is found to have been fudged because the doctor was on the payroll ofor something determined to find something wrong … to which the doctor has admitted and has thus been struck from the register of British doctors …. I start having issues. This said indo not deny that in a very small cases vaccines MAY have been an issue – all vaccines have issues but in the pros and cons battle they are far more beneficial for individual and communities than the risk would outweigh.)
Back to the point though. AS does not ‘speak’ for anyone with autism. Like a well polished prosperity gospel ‘salesman’ preacher, AS preaches their Gospel of cure, cure, cure whilst giving only the smallest cursory nod to research and community support for those affected.
I have oft said it is not up to us to ‘cure’ an illness such as Autism (the uptick in diagnosis is often explained in psychology circles as likely better diagnostics and since people in living memory were diagnosed as “Juvenile Schizpphrenics” I would have to agree on that to some degree) but to find a way to ease symptomology, researching ways to deal with associated orbital diagnoses and actual familial support.
NONE OF THESE IDEAL ARE CONCEPTS AS WANT TO DEAL WITH. (These guys remind me of PET – an organisation who would rather put down healthy animals rather than allow us to have well loved and treated pets).
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Reblogged this on Pbmom's Blog and commented:
Reposting this blog. It still holds true. Autism Speaks only speaks for themselves.
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