From the Archives: Autism Speaks, But Not For All

The Center for Disease Control reports that one in 88 children fall somewhere on the autism spectrum. In addition, countless adults on the autism spectrum live their entire lives undiagnosed. Given the prevalence of autism in our society, and how little we understand of it, this condition deserves more scientific attention and public awareness.

For nearly a decade, the American organization called Autism Speaks raised millions of dollars pursuing these goals, appearing on television, utilizing celebrities for publicity, and becoming the main autism charity in public view. Unfortunately, many of Autism Speaks’ views and policies make it very problematic in the eyes of the disability community, and donors should not treat it as the de facto representative of autistic people.

For those unfamiliar with the term, the “autism spectrum” refers to a range of conditions characterized by difficulty with social interaction and certain kinds of communication, a preference for repetitive behavior and sameness, narrow focus on very specific interests, and sensory abnormalities. Many people with autism, given access and education, use alternatives to verbal language, like signing or typing. Many others, including those with Asperger Syndrome, may experience no issue with verbal language, but instead find difficulty with body language and unspoken social rules. Conversely, people not on the autism spectrum or any other atypical neurological spectrum are called “neurotypical.”.

Autism Speaks’ consistent framing of autism as a debilitating disease in need of a cure proves problematic, as it implies autistic people need to become neurotypical to lead healthy lives. This attitude, regardless of intention, only perpetuates a stigma attached to having autism. Though many autistic people and their families may require services and accommodations to live comfortably, a more urgent requirement is acceptance and understanding from society at large, free of the associated stigma.

The directors behind Autism Speaks also deserve scrutiny. On January 6, 2014, the Autistic Self Advocacy Network, along with dozens of other disability groups, published a joint letter to the sponsors of Autism Speaks, criticizing the organization’s exclusion of actual autistic people in its leadership. The fact that neurotypicals run Autism Speaks without any autistic people in leadership positions may explain its ableist decisions, including ad campaigns which depict autism as an epidemic, a tragic burden on neurotypicals, and likening it to natural disasters and terminal illness. Drawing on pity and fear obviously worsens public perception of autism and autistic people. This leads to stereotypes and misconceptions, including the dangerous myth, propagated in part by Autism Speaks, that vaccines cause autism.

Other autism advocacy organizations, like the Autistic Self Advocacy Network itself, include countless intelligent and articulate autistic people in their ranks, so Autism Speaks’ omission should certainly raise red flags. The disability community takes its slogan seriously: “Nothing about us, without us.” In a world with non-verbal autistic advocates like Amanda Baggs and Lucy Blackman, and a number of big-name celebrities with Asperger Syndrome, like Dan Aykroyd, Susan Boyle, Daryl Hannah, and Courtney Love, there really is no excuse for Autism Speaks to exclude the people for whom it supposedly advocates from leadership positions.

Autism Speaks’ implicit goal of a world without autistic people dissuades prospective autistic advocates from associating themselves with the group, which worsens the leadership issue. Famous autistic author, John Elder Robison, resigned from Autism Speaks for this reason in November, citing that he had not found success in reforming the organization from within. This event, among others, sparked a movement among autistic people and allies to boycott sponsors of Autism Speaks, a sentiment which has attracted up to 3,000 supporters in only two months.

When an organization receives condemnation from the group it tries to help, something has clearly gone wrong. Undeniably, Autism Speaks has helped families of children with autism, and raised awareness like no other organization; its resources can still help people, so total condemnation may be counterproductive. At the same time, Autism Speaks’ offensive views clearly need reform, and when potential reformers like Robison feel powerless to change minds from the inside, this leaves few choices.

Neurotypicals must view autistic individuals as “different, not less,” and certainly not as sick. In sum, as famous autistic advocate Dr. Temple Grandin phrased it, “The world needs all kinds of minds.” Instead of a one-track agenda of curing autism, we should focus on developing new ways for autistic people to communicate and new styles of education that work for them. Yes, new treatments to relieve undue physical or emotional distress must be a priority as well, but more importantly, there should be fewer stressors in society that cause autistic people such pain.

If word spreads, and enough allies, as well as autistic people themselves, implore Autism Speaks to change its harmful views, then maybe we can accomplish what Robison alone could not. Until then, research the goals and spokespeople for potential nonprofits before supporting them, carry an awareness of the organization’s goals and the implications of those goals, and take responsibility to reform aspects of society that stigmatize or invalidate disability groups.

2 thoughts on “From the Archives: Autism Speaks, But Not For All

  1. Autism Speaks has done many things to try to make people happy. There comes a point in which where applicable dislike is just bitterness that cannot be reasoned with. Additionally to where specialized and or unique ideology progresses goes against the fibers or organic rights of others to choose treatment, research and so on which would become increasingly available as time passes and optimized in fundraising if those ideologies respected individual choices.

    A plight for dignity is something I to support being diagnosed with autism. However we must respect the right to treatment and research as well as the desperation of need at times. People can be passionate, people make mistakes and folks need to learn to work together and forgive. The notion of cure has already been removed from Autism Speaks website. However the cure as a concept when applied to Autism is especially subjective. For instance some with autism at least describe a “fire” sensation in their bodies, like me. This created the need for rocking which I would like cured and I’d like that to have both respect and dignity as a choice. For those that cannot verbalize and want to, that’s their right to have that research and potential treatment and potential “cure” subjectively. No one has the right to take away that human right.

  2. Autism Speaks already changed their mission statement… (https://www.autismspeaks.org/about-us/mission)

    Neurodiversity speaks, but not for all autistics. Studies show that that one-third of people with autism also have a seizure disorder, half suffer serious digestive complications, 49 percent wander, and more than 30 percent are nonverbal. (https://www.autismspeaks.org/blog/2015/08/25/call-unity) So at least for those autistics, autism cure organizations are definitely needed.

    Even though I am high-functioning, I still have problems with staying on task and effective communication, which is important for every job and social life. No accommodation will be a good substitute for a cure.

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