Why Autism Speaks Does Not Speak for the Autistic Community

Sabrina Kearney/The Exonian

By Kai Lockwood

Senior Columnist

April is Autism Awareness Month. As the co-head of Exonians with Disabilities and Different Abilities (E.D.D.A.), I often find myself looking through “the disabled side” of social media, scanning the Twitter accounts of disabled activists such as Jessica Kellgren-Fozard,  Julia Bascom and Ryan O’Connell. This month, I have seen the message “Don’t Support Autism Speaks” plastered all over the internet.

For those of you who do not know, Autism Speaks is an “advocacy group” founded in 2005 by Suzanne and Bob Wright after their grandson was diagnosed with autism. Since then, it has become a preeminent figure in the autism and neurodivergent rights movements. It is best recognized by its United Nations-sanctioned World Autism Day, Light It Up Blue campaign—recognized in 150 different countries—and now-iconic blue puzzle-piece logo. 

So why is a supposed leader for autism awareness being shunned by social media? Well, for three main reasons: (a) recent findings that its executives used donations to pay for six-figure executive salaries instead of autism advocacy, (b) the organization’s recent push to find the genetic “cause” of autism and (c) the ongoing struggle between familial and self-advocacy in the disability rights movement. 

At the risk of sounding like a history essay, I have looked into each of those claims about Autism Speaks, and, the deeper I look, the more I have come to the conclusion that Autism Speaks is wildly out of step with the real sort of activism the autistic community needs.

For the first accusations—that Autism Speaks was padding the pockets of executives rather than putting that money towards advocacy and research—I looked at Autism Speaks, Inc.’s Consolidated Statement of Functional Expenses, available on their website. 

In the documentation (the breakdown for their expenses in fiscal year 2018), “salaries and related benefits” totaled to 20,783,643 USD. By contrast, Autism Speaks’ main contributions to activism—scientific and familial grants, awards and research, as well as conferences and events—altogether totaled 10,252,542 USD. 

That is less than half the amount it spends on “salaries and related benefits.” 

Well then, is it possible that Autism Speaks just has a large staff or cost of operation? Sure. But Autism Speaks’ total expenses in 2018 were 75,601,572 USD. So only 13.6 percent of their total expenditures actually went to autism advocacy. While I could not find any direct financial records for Autism Speaks’ Board of Directors, I believe the percentages alone tell us a lot about where a “not-for-profit corporation” is spending its money.

But there are even problems with the money it actually spends on activism. Over the past year, several of Autism Speaks’ funding grants have gone towards “groundbreaking new genetic discoveries” with the hopes of finding a genetic component to autism. As for that famous blue puzzle piece logo? It’s the “missing piece,” meant to represent the missing cure to autism that Autism Speaks has been looking for. 

Many have compared the organization’s recent funding of genetic research to eugenics, and they’re fundamentally right—negative eugenics, at the core, is an attempt to root out genetic defects and prevent the propagation of “undesirable” traits. Autism Speaks’ previous statements on the issue should concern any true activist: they say they hope to “search for answers” to “a disease that has taken our children away,” an “epidemic” as they call it. They referred to autistic people as “burdens” and “tragedies.” 

Burdens. Tragedies. This is not autism advocacy.

I would like to clarify here that the current sentiment in the larger autism or neurodiversity rights movement is that people with autism just perceive the world differently. And they’re right—instead of trying to find a cure, we should be focusing on advocating for the acceptance of autistic people and breaking down the stereotypes often used to deny them employment and healthcare. 

Autism Speaks, however, still funds studies that try to find genetic links to autism or ways to identify autism before the birth of a child. A large field of genetic tests or in-utero screenings are dangerous, particularly given present societal stereotypes—they are almost designed such that parents are pressured to avoid having children with a high chance of getting autism, to abort any fetus found to have autism or even hope that new genetic therapies (like CRISPR) will prevent autism. 

While I believe people should have agency in their own family planning, it is easy to see how negative stereotypes about autistic individuals may have more parents leaning towards not having autistic kids—which does strike me as eerily similar to eugenics. 

And this isn’t just a slippery slope case: following the introduction of prenatal screening for Down’s Syndrome in Iceland, it disappeared almost entirely from the island. Why? Because nearly 100 percent of women decided to end their pregnancies after finding out that their child might have Down Syndrome. 

The third problem with Autism Speaks is their more familial centered advocacy. One of the main obstacles to the disability rights movement is the stereotype that its membership consists mostly of overly-supportive family members. Autism Speaks focuses most of its programs on the family members of autistic people rather than those affected directly—for instance, it offers transition plans for the family members of autistic people, only indirectly helping these autistic people transition into adult life. While providing help for parents and family members is great, it shouldn’t be substituted for helping autistic people themselves. 

The stereotype of the overly-supportive parent or family member also often minimizes the voices of people with disabilities. It creates a belief that disabled people need someone else to advocate for them. It has also led to legislation that perpetuates partner and parental abuse of disabled individuals by taking away disability benefits from those who get married, forcing them into dependence upon their partners. While Autism Speaks, to my knowledge, does not support the removal of disability benefits, its dogma of hearing the voices of parents of disabled children instead of the children themselves plays into a harmful system in which the voices of disabled people are suppressed.

For those of you now wondering how to support autism awareness without supporting Autism Speaks, I highly suggest you do not participate in social media campaigns such as #lightitupblue. Instead, use the #redinstead campaign to show your support. If you want to go further, I recommend supporting the Autistic Self Advocacy Network (ASAN) and the Autistic Women and Nonbinary Network (AWN); both organizations are run by and for autistic individuals. If you want to learn more about autism from the autistic perspective and read more about the neurodiversity movement, I suggest looking into the #actuallyautistic and #neurodiversity campaigns or reading books about the greater disability rights movement. My personal favorites are Waist High in the World by Nancy Mairs and I’m Special by Ryan O’Connell. 

In any case, stand with the actual, genuine movement for autistic advocacy, not the dangerous campaign that is Autism Speaks.