Autism Speaks’ Rapid Decline

The following blog is written by Yuval Levental, a reader and contributor to our blog site. At present Yuval, who is on the autism spectrum, completed a master’s degree in Electrical Engineering and is interested in doing research on Transcranial Magnetic Stimulation (TMS). He started a job in Information Technology where he answers questions and repairs computer hardware and software. Yuval has previously written an essay at corticalchauvinism.com where he discussed his life, views on neurodiversity, and a couple of autism symptoms (https://corticalchauvinism.com/2015/01/14/visualizing-neurodiversity-breathing-for-treatment/).

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Autism Speaks is one of the largest and perhaps most controversial autism fundraising and advocacy organizations in the world. It was founded in 2005 by Bob and Suzanne Wright, and shortly afterwards, it incorporated the National Alliance for Autism Research (NAAR) and Cure Autism Now (CAN). The latter were two major medical autism advocacy organizations that existed around that time. In recent years, significant changes to their goals, which involved moving away from a biomedical model, have led to a decrease in research funding by 40% and to a decrease in website traffic by 33% from last year.

While Autism Speaks served as a significant source of autism awareness, this positive aspect has been overshadowed by controversies embroiling the organization. To begin with, several neurodiversity advocates claimed, although giving vague alternatives, that the money that Autism Speaks raised should be spent on accommodations instead of medical research. In fairness, Autism Speaks responded by pointing out the medical problems that many autistic faced. Another difficulty was that, for a while, Autism Speaks claimed that vaccinations caused an increased risk of autism, though the organization now acknowledges that vaccines do not cause autism. However, this view caused multiple board members to resign.

The collapse of Autism Speaks accelerated in 2015, when founder Bob Wright resigned from the organization and was replaced by Brian Kelly. Shortly after, Dr. Stephen Shore, a professor of autism education, was elected as one of the first autistic board members of Autism Speaks. Dr. Shore, who opposes a cure to autism, claimed that he accepted his nomination because Kelly advocated for supports and services over a cure.

In 2016, Autism Speaks changed their mission statement to the following:

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.

In the past, the mission statement instead read:

We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families, and society: and we work to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

This is a problem because Autism Speaks started as a medical autism advocacy organization, incorporated two medical autism advocacy organizations, and even emphasized at one point the medical problems that autistics face. This new vague mission statement could cause a reduction in funding for the original goal of medical research. An appropriate solution for autistics that want an organization focusing on accommodations would be to create a separate organization for this purpose.

As if Autism Speaks wasn’t going downhill fast enough, they published an essay where noted autism advocate and engineer Temple Grandin stated she would only attend talks given by Autistics who had a steady career. This ignores the dire reality that unemployment among autistics is significant, at a rate which is even higher than what people with most other disabilities face. One wonders if this is what Autism Speaks really means by “understanding and acceptance”. Jonathan Mitchell and Amy Sequenzia, two autism advocates with very different perspectives, both spoke out against this viewpoint (1, 2).

What are the results of this change in management and main goals? In 2014, Autism Speaks spent $21.2 million on funding research (p. 28). In 2015, they spent $20.4 million on funding research (under Financials). But in 2016, they spent only $12.7 million on funding research, despite total funding being approximately the same (p. 19). This is an approximately 40% decline of research funding in one year. Additionally, traffic to the Autism Speaks website has also taken a major hit in the past few months. Total traffic is down by 33% from April 2017, and is the lowest since January 2014.

Duval

Most likely, the reason for the sharp decline in medical research spending and website traffic is that various parents, professionals, and autism advocates may not like the new switch from biomedical research to the new emphasis on social advocacy. The current directives of Autism Speaks betray the original mission and it is not clear how will they fulfill this new goal. Clearly, claiming that all autistics are capable of holding down a stable career is not the way to do it.

Whatever good or bad actions Autism Speaks has undertaken in the past, it has run its course.

5 responses to “Autism Speaks’ Rapid Decline

  1. I’m not sure their rate of traffic on their website is a valid indicator. If they’re losing revenue, that would be a better metric. This can be checked out by viewing their 990 forms.

    Liked by 2 people

    • Their total revenue hasn’t declined yet. This is most likely because most of the money it raises comes from corporations, which have plenty to donate. Most likely, many corporations feel an internal obligation to support the perceived image of Autism Speaks.

      However, it is losing public relevance, as measured by the traffic decline.

      Liked by 1 person

  2. This organization started good, with good intentions. Its a shame it has been in decline but anyone with children with autism saw this coming many years ago and stopped supporting them.

    Liked by 2 people

  3. The traffic for AS’s website could have declined for many other reasons besides for the change in the mission statement. There’s no proof presented here that the decline was caused by AS’s change in goals. In fact, due to my experience within the community, I think it’s more likely that the traffic declined because people were made aware of the problems in AS and because better information and support were found via other newly-created/popularized platforms. Furthermore, it’s pretty messed up to blame autistic peoples’ critique of AS for their decline in business. If AS wanted to retain a focus on medical research WHILE being respectful to autistics in the ways that were asked of them, they were more than capable of doing so.

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  4. Is it possible that Autism Speaks is trying to find a compromise? Was it Alexander Pope who said that recognizing yesterday’s errors is what makes one wiser?
    I find ir sad that this division between pro-cure and neurodiversity seems to carry on regardless of the facts or the feelings of many affected and their families. And what if both were wrong and both were right?
    Pro-cure people, including Autism Speaks, have had it for many years. The scientific facts demonstrate that their endeavours have been a long self-justifying failure. Worse still they have indirectly backed up the growth of practices, like prescription of antipsychotics which have caused further disabilities and even deaths. And all of this accompanied with questionable concepts such as “co-morbidity” as if there was reliable evidence that medications or other treatments were effective in such supposed co-morbid conditions. And it is logical, autism is not a disease, it is a disability and as such it needs prothesis, that is understanding, support and environments, no cures. At times the best way to protect the rights of the affected, is segregation, partial, non-intitutionalized, temporal, but segregation. This is not politically correct or good business and this is one of the ways on the part of some professionals to colonize and climb up ladders which is, I am afraid, what often is the real interest at play. Desperation makes for good clients and vaccines are in no way the only theme on this market.

    Neurodiversity people are even worse. They start superbly with a serious critique of human rights abuses as in the question of ABA, but it seems to me that they embark on a direction that is nothing but denial of a spectacular kind whilst loving the show. Denial used to be a common if complex concept in psychiatry and neuropsychology: lack of insight, primary and secondary gain, anosognosia, were all concepts rich in meaning but also involving more work and reflexion and few commercial rewards. With neurodiversity denial becomes a whole ideology which ends up not only moving away from recognizing “yesterday’s errors” but indeed converting them in the source of freedom and the motor of civilization. Here co-morbidity is encountered as a consequence of the extra talent of autistic people and the lack of it on their families and those that do not agree with them. For those families who have been living with limit situations for years, neurodiversity not only does not offer any hope but it insults them. The Convention of 2006 does offer real hope and should be read very attemptively by Autism Speaks. However following neurodiversity ideas, A.S. might only want the show to go on: Denial in Blue, it might need another Gershwin to play on the “light it blue” Pisa Tower.

    AS for research, of course there should be, but on present knowledge of CNS, their effectiveness could only be felt at the level of prevention and you would need to quantify objectively the impact of genes or other causes to justify termination of pregnancy, for example. This is not only very difficult but would lead to complicated ethical issues. So perseverance and prudence should be the key words.

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