Why Don’t People Like Autism Speaks?

If you (or a family member or friend) are a part of the autistic community, you are almost certainly aware of the organization Autism Speaks. Founded in 2005, it is by far the most prominent autism research organization in the USA. You may associate it with the movement to “light it up blue” in support of autism awareness, or its fundraising activities, like its annual walks held in many cities nationwide.

You also may have heard, though, of controversies surrounding this organization. The autistic community has raised several serious concerns with their practices, which I’ll review in this post for consideration. While some improvements have been made in more recent years, the history and underlying principles of Autism Speaks continue to bear scrutiny.

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Concerns with Autism Speaks

The reasons why people don’t like Autism Speaks are well-documented, and in this post my focus will be on amplifying autistic voices on the topic. Bear in mind, though, that “If you’ve met one person with autism, you’ve met one person with autism.” Perhaps ironically, that quote is from Dr. Stephen Shore, an autistic board member of Autism Speaks. No community is a monolith, and there will always be mixed opinions about this organization as well as any other topic.

With that being said, the most serious concerns with Autism Speaks revolve around three main topics: the goals of the organization, how they communicate those goals, and how they allocate their significant funding.

Ableist Goals

While the mission statement of Autism Speaks currently states that it is “dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families,” the organization has its roots in the anti-vaccine movement with the intention to identify the causes of autism and then prevent or end its occurrence.

As I’ve written about in a previous blog post, autism cannot be cured, and attempts to do so are harmful in and of themselves. Much of the research funded by Autism Speaks is in accordance with the medical model of disability, seeking to discover “solutions” to autism rather than supports for autistic people. As autistic rights activist Paula Durbin-Westby put it, Autism Speaks treats autism as a disorder or disease, which has different connotations than treating it as a disability.

Autism Speaks also provides ongoing promotion and support for the Judge Rotenberg Center, an institution that continues to practice contingent electric skin shock (CESS) with autistic and other disabled patients, despite its demonstrated risks and harm. In spite of Autism Speaks removing its goal of curing autism in 2016, this is yet another action that demonstrates an underlying goal of changing autistic people to fit in with the norm. Incidentally, support of the JRC is a problem within the field of ABA as well, which I’ve covered in another post.

Harmful Language

Again, the goals and actions of Autism Speaks have in part changed over the years since its founding, but much of the language used by the organization in advertisement of its initiatives is still deeply problematic.

Language and actions must be considered side by side with each other, but ableist terminology can be an indicator of ableist beliefs, whether conscious or subconscious. Our most recent blog post, How to Support Autism Awareness and Acceptance, discusses some facets of language to keep in mind when working to become a good advocate for the autistic community.

Perhaps the most high-profile example of this issue was the “I Am Autism” promotional video which originally aired in 2009. It premiered at the United Nations World Focus on Autism Conference, and while Autism Speaks no longer hosts it on its website (due to the massive backlash against it), the video is still available through many sources online. Frankly, it is hurtful enough that I’m hesitant to link to it directly. Suffice it to say that it frames autism as a harmful and insidious force, blaming it for everything from bankruptcy to divorce.

A ten-year retrospective of the video and other harmful forms of “outreach” by Autism Speaks was published by Shannon Des Roches Rosa in her article Things Left Unsaid. A review and critique of the video that was published in Time can be found at this link, and the full transcript can be found aquí – but please be aware that the content may be troubling to read.

Even outside of this one prominent example, Autism Speaks and its founding members have continued to compare being autistic to disasters, diseases, and other threats, as reviewed in this joint letter to the sponsors of the organization platformed by the Autistic Self Advocacy Network (ASAN) here.

Financial Concerns

It can certainly be argued that regardless of the history of Autism Speaks and concerns with how its values and goals are communicated, the organization’s actions should speak louder than its words.

Whether the actions of Autism Speaks have done enough to combat these other concerns is a matter of opinion. This flyer provided by (ASAN), updated annually, reports that only 1% of the budget of Autism Speaks is allocated toward providing supports for autistic individuals and their families. The biggest slice of funding goes toward lobbying for “awareness” of autism, but awareness alone is not enough.

Research accounts for 24% of the budget, but as mentioned previously, the goals of said research are often suspect. According to the Department of Health and Human Services’ Inter-Agency Autism Coordinating Committee, 1% of money allocated for research goes toward investigation of methods for improved service quality, and less than 0.25% toward topics related to the needs of autistic adults.

A New Way Forward

Some improvements to Autism Speaks have been achieved since its inception in 2005. One huge historical concern has been the lack of representation by autistic people on the board of the organization.

In 2015, Autism Speaks did announce its appointment of two autistic people to the board of directors. However, ASAN notes that this in and of itself does not address the remaining concerns of prioritization of the medical model of disability with “an imbalanced budget which allocates the majority of their finances towards biomedical research and fundraising… investing little towards services and supports” and “profoundly harmful language and rhetoric in their advertising, fundraising, and ‘awareness’ campaigns.”

As an example of how more inclusive and neurodiversity-affirming research can be pursued, ASAN is a supporter of Community Based Participatory Research (CBPR). In a nutshell, CBPR entails community involvement with both the creation of research questions and agreement upon its goals and methods. The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) provides more information about CBPR on its website.

Overall, the “branding” and outreach of Autism Speaks has shifted to more prominently feature the voices of autistic people, and also to provide resources for autistic adults rather than marketing strictly to parents of autistic children. This year, the senior social media manager of Autism Speaks (who is autistic herself) wrote an article in support of the organization. A more detailed level of disclosure of the research and fundraising goals of Autism Speaks, along with de-platforming of harmful organizations such as the JRC, would likely go along way toward rehabilitating its image.

Alternative Supports

In the meantime, there are so many other organizations offering resources for and by autistic people that can be celebrated and supported instead of Autism Speaks. Here are just a few:

Michigan’s council and The Arc chapter can be found at https://www.michigan.gov/mdhhs/keep-mi-healthy/mentalhealth/developmentaldisability y https://thearc.org/chapter/the-arc-michigan/ respectively!

It can be difficult and even dangerous for autistic people to speak up and be heard about their concerns regarding Autism Speaks as an organization. Katie Miller wrote about just one example of the exhaustion involved in in self-advocacy and protest in a blog post hosted at ASAN.

I hope that this post helps to ease that burden, even if just a little, and also allows you as the reader to make an informed decision about supporting Autism Speaks or not. Is Autism Speaks bad? That is a complicated question to answer, but at the least there are improvements that can clearly still be made by the organization.

You can learn more about our mission and values here at Waypoints at https://waypoints.life/mission-and-values/, as well as via our frequently asked questions page. We are explicitly supportive of neurodiversity and focused on individualized changes to the environment to help support learning – never suppression of autistic traits and voices.

If you would like to chat more with any of our team about Autism Speaks or anything else regarding the neurodiversity movement, we would love for you to reach out to us at info@waypoints.life.

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My name is David Bergmark, and I am the founder and CEO of Waypoints. I have a PhD in Applied

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