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Joining charities like the American Cancer Society’s Relay for Life and Susan G. Komen for the Cure, Autism Speaks has recently been afforded significant national exposure, giving it similar status as other “household name” titans of charity. Major League Baseball has teamed up with the group, over two hundred college and university groups have helped to raise awareness, and major cable news channels have participated in Autism Awareness month. The Autism Speaks brand has certainly been on the rise.

Following that trajectory, last week was certainly a busy week for the organization – they teamed up with Sesame Street, partnered with Google on a major Genome Project, and their college surrogates have sung their praises in the public square, all while mourning the electoral loss of their friend, majority leader Eric Cantor (R-VA).

However, as the week concluded, the Daily Beast asked “‘Autism Speaks’ – But Should Everyone Listen?,” reigniting the debate surrounding the organization’s controversial past. The article has been picked up by watchdog groups and has reinvigorated Twitter hashtag #BoycottAutismSpeaks.

To summarize, the article (which is certainly recommended reading) provides a comprehensive, descriptive history of the organization’s questionable background:

1) Autism Speaks spends a comparatively low percentage of its expenses towards programming. According to Charity Navigator and the Urban Institute, Autism Speaks spends 70.9% on program, yet similar organizations like Autistics Self-Advocacy Network and the Autism Science Foundation spend 79.8% and 91.5%, respectively. The organization only receives two stars (out of four) from Charity Navigator on its financial score.

2) Autism Speaks pays its high level officials quite well, with at least thirteen individuals taking in “well into six figures.” For example, the Daily Beast article explains that Chief Science Officer Geri Dawson took in $465,671 in 2012.

3) Back in 2009, Autism Speaks’ chief executive, Alison Singer, resigned due to her position on vaccine safety. Singer explained that Autism Speaks was dead set on funding research acknowledging a link of vaccines causing autism. Though a fair hypothesis, Singer claims they had already found and funded dozens of studies declaring vaccines were not the cause. Singer later went on to found the Autism Science Foundation, which proclaims “Vaccines save lives; they do not cause autism.” Even today, Autism Speaks seems to continue to fund such studies, with its website stating, “It remains possible that, in rare cases, immunization may trigger the onset of autism symptoms in a child with an underlying medical or genetic condition.”

4) The organization has been challenged in its interpretation of how it handles autism, which is largely understood as a spectrum disorder (meaning there is range of conditions). This issue became most apparent during an episode in late 2013 featuring a blog post by founder Suzanne Wright in which she “equated having a child with autism to ‘not living.’” The post provoked great outrage, leading to the resignation of the only individual with autism on the group’s board, John Elder Robison. Today, Robison speaks out,

Autism Speaks was founded by grandparents and it is dominated by parents. There are plenty of autistic adults it purports to speak on behalf of. It should be governed by autistic people.

He continues by saying many questions regarding Autism Speaks’ “cure” approach are quite “divisive within the autism advocacy movement.” Recapped best by the author’s Twitter, the article seeks to explain “Why Autism Speaks doesn’t speak for everyone with autism.”

Though the piece sheds an interesting light, the reason the organization’s questionable past is relevant today is following last week’s political defeat on an amendment to the “Autism CARES Act” which would have increased the representation of “self-advocates on federal boards.” Autistics Self-Advocacy Network’s Ari Ne’eman argued that the amendment “did not end up getting a vote in part because of Autism Speaks,” implying their philosophy against self-advocates and their incredible political power blocked what would have been an important step for those in the autism community.

Despite one’s position on federal funding for research or the Interagency Autism Committee, if Autism Speaks has the political clout to severely influence legislative debate, the Daily Beast’s timely piece raises significant questions regarding the stances of a seemingly controversial organization – an organization trying to deal with a rather delicate issue affecting a great number of loved ones across the nation.

16 thoughts on “Understanding the puzzle of Autism Speaks”

  1. Naughty Autie says:

    @ Jeff Sexton: That’s unfair. Electroconvulsive therapy is exactly that, and a useful treatment for some people with psychosis or severe depression. The tools used by the Judge Rotenberg Center are more akin to the shock collars for dogs made illegal some years ago here in the UK.

  2. I think any organization which holds that much political power — to defeat an amendment to the _Autism CARES Act_ that would have increased the representation of self-advocates on federal boards —ought to have their 501c3 status revoked.

  3. Jeff Sexton says:

    You forgot to mention that Autism Speaks supports electro-shock “therapy”, ie, torture. They also support eugenics in trying to find a way to detect ASC in utero so that the baby can be aborted. And in their insistence on ABA exclusively, they support child abuse, since ABA is exactly that.

  4. Dean McIntosh says:

    You make so many references to controversial “pasts” and such that you are sounding like a used car salesman. First, controversial implies an argument with merit to both sides. The fact that if Diabetes America behaved as Autism Speaks FNA does, it would be shut down, demonstrates the extent of controversy on offer. If autistic rights meant as much as normie rights, Autism Speaks FNA would be charged with fraud. For starters.

    Which brings me to the second point. Past? When I wake tomorrow, I will hate Autism Speaks FNA just as much, if not more. My reasons will be just as valid. The reasons autistic people universally hate Autism Speaks FNA have not gone away, and if ASFNA were forced to stop existing tomorrow, it would still be at least another fifty years before those reasons go away. If you do not hate Autism Speaks FNA, then you hate autistic people.

    Go to tumblr or Google and look up “autism speaks or hitler” before writing about them again. The result will prove very instructive.

  5. Brenda Wideman says:

    I want to say Autism Speaks does NOT speak for my family. I found a organization that does want to help kids/people on the autism spectrum. In a yrs time they have helped over 800 families with autism. They treat you like individuals and real people. They do things like help kids get tools they need to help the verbally and educationally and also do small things like sends random moms/dads who win flowers, just letting us know there’s someone out there that does understand and care. Plus the are trying to get restaurants to place sensory boxes in their establishments to help people with autism be more comfortable during their visit in Alabama. Again Autism Speaks don’t speak for us, but I will stand with Kulturecity any day side by side. My kid don’t need a cure my kid needs patience, understanding, love and ACCEPTANCE!I will also say as long as adults are viewing it as “bad”(As I have seen Autism Speaks do before) the kids cant learn to accept themselves as they are and embrace their differences. That’s what we always want is acceptance and awareness.

  6. Paula Moerland says:

    Well done, says this autistic adult who writes MUCH better than she speaks, is highly emotional and excessively caring about this planet and its people, and is sick of being told there is something wrong with her. Thanks to the cruelties within current society, I am struggling and can get no help. I would rather fix society than need to rely on public assistance. I guess that makes me an idealistic autistic, too. In case it is not clear: Autism Speaks does NOT speak for me. When they start speaking in the language of love and compassion, then I’ll reconsider my view of them.

  7. Jane Strauss says:

    As an Autistic adult with others on the spectrum in my family, and a former grant writer, I very much appreciate Philanthropy Daily’s shedding light on the controversial aspects of Autism Speaks. Your comparison with ASAN and ASF is particularly telling. One of the aspects of Autism Speaks that is particularly frightening to Autistic folks is their emphasis on “gloom and doom.” Currently , in Idaho, a 14 year old who murdered his brother and father in cold blood is spouting what sounds very much like Autism Speaks’ rhetoric, and blaming his brother’s autism for the breakdown of his family and his own actions.

  8. Debbie D. says:

    As an autistic person I am getting great satisfaction out of seeing more published articles about the inadequacy of Autism Speaks. Our community is outraged that this organization is filling their pockets with cash that should be helping us build better lives.

    Contrary to popular belief we are not a bunch of non-verbal, window licking, emotionless, disruptive mutants. Believe it or not we are HUMAN. We have feelings and challenges just like every other human.

    We also have many positive attributes. We run the gamut of intelligence regardless of ability to speak. Many of us who have difficulty with speech prefer to communicate by writing. If you can read this you have just “heard” an autistic person.

    Now it’s time for Autism Speaks to hear us too. It’s time for them to let us speak for ourselves. IT IS TIME.

  9. Thank you for a well researched, balanced article. It is important to me as a Disabled Autistic person that so many people in the world care about us and want to donate money because they care. Disreputable organizations with a lot of money for advertising should not be allowed to misuse to donations of good, caring people.

  10. Kara Beer says:

    Thank you! Article has been updated to reflect correction. — Ed.

  11. paprika pink says:

    It’s John Elder Robison, not Robinson.

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