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.