Autism Speaks celebrated its 15th anniversary this week with a colorful new logo to replace its traditional blue puzzle piece. In a video, the organization said it was “sharing a new, more inclusive Autism Speaks” that represented “the infinite diversity of perspectives and experiences of people with autism.” On the surface, including many diverse voices and acceptance of autistic people seems nice. The problem is that Autism Speaks has actively contributed to the hostility that autistic people face.
Obviously, the organization did not create that hostility, which has caused great suffering. But as the largest nonprofit related to autism, it spent years promoting ideas and information that furthered stigma and misunderstanding about the condition. In 2009, Autism Speaks released an ad titled “I Am Autism” that portrayed autism as a silent and sinister killer. The ad claimed that autism “works faster than pediatric AIDS, cancer and diabetes combined” and ensures that marriages will fail, financial ruin will ensue and that it will “rob [parents] of [their] children and dreams.”
Autism Speaks has run high-profile advertising and fundraising campaigns suggesting that autism is a malevolent force that afflicts families and makes parents miserable. A few smaller groups, like Cure Autism Now and Defeat Autism Now! predated Autism Speaks, but none have had its massive budget and wide reach. The narratives about autism that Autism Speaks has put forth have defined and shaped autism in the public imagination.
Autism Speaks’ goals have seemed to change little. Last summer, it partnered with “Sesame Street” to promote a tool kit for parents of newly diagnosed children that, among other things, compares autism to leukemia and suggests that mourning is a normal response to learning of an autism diagnosis. There is an entire section of the tool kit that walks parents through the Kubler-Ross stages of grief: denial, anger, bargaining, depression and acceptance.
“Many parents must mourn the loss of some of the hopes and dreams they had for their child before they can move on,” the guide notes in the section on sadness. Autism is neither a degenerative nor a fatal condition. No one dies of autism. But the rhetoric in the tool kit made autism diagnosis sound as though a child has died.
According to its most recently available annual report, a little less than half of Autism Speaks’s budget of more than $50 million in 2018 went to “awareness” campaigns and lobbying. Autism Speaks has consistently stood against autistic empowerment and self-advocacy on Capitol Hill. In 2014, the Autistic Self-Advocacy Network said Autism Speaks lobbied heavily to kill an amendment to the Autism Cares Act that would have set benchmarks for the inclusion of autistic people in the research and policies that affect their own lives. The Autism Cares Act gives billions of dollars to provider organizations and nothing to autistic-led organizations, services or quality-of-life improvements. The most recent reauthorization of the bill, signed by President Trump, allocated $1.8 billion.
This is a time of growing acceptance of the concept of neurodiversity, the idea that autism and other neurocognitive disabilities are natural differences rather than afflictions. Dozens of major corporations, including SAP, Goldman Sachs and Ernst & Young, have launched “Autism at Work” initiatives, to promote employment of autistic people in the technology sector.
At the same time, more autistic adults have argued that they need to be at the center of any policymaking that affects their lives. This contrasts with Autism Speaks, which was founded by Bob and Suzanne Wright when their grandson was diagnosed with autism. The objectives of the organization have largely involved serving families — they have resources for parents, siblings and grandparents, but little for autistic people. The changes in rhetoric are meant to show that it is responding to shifts in society’s understanding of autism. But the attempt to appropriate the aesthetics of neurodiversity without changing conduct or content comes off as oblivious and craven.
Autism Speaks’s new logo, which now includes a rainbow gradient instead of the organization’s traditional blue, is meant to “embrace the diversity” of the autism spectrum. Since the 1990s, the symbol of neurodiversity has been an infinity symbol with a rainbow gradient for exactly that reason. But Autism Speaks does not acknowledge the connection in any of the materials it has released promoting its new, more inclusive look.
Similarly, Autism Speaks said it will use “identity-first language” in its materials going forward — saying “autistic people” instead of “people with autism.” It cited a poll last year on social media as the reason for the change. But again, the organization is decades behind much of the autistic adult community; in 1999, before Autism Speaks was founded, one of the founders of the neurodiversity movement, Jim Sinclair, wrote an entire essay about preferring identity-first language. Its change of heart came not because of a decades-long push for change by autistic advocates and organizations, but because of a Twitter poll.
To those outside the autism world, this may seem like an insignificant semantic difference. But it represents how Autism Speaks has had a monopoly on how people discussed autism and how it made a concerted effort to dismiss and disregard the opinions of autistic adults who have had the temerity to speak for themselves.
Autism Speaks has chosen to embrace the aesthetics of neurodiversity without adopting its principles in any meaningful way. It wants to talk about inclusion and acceptance while continuing to fund and promote precisely the opposite, and do it without acknowledging or crediting anything neurodiversity advocates have said or done for the past 30 years. Without even apologizing for the damage it’s done. To quote Autism Speaks’s latest campaign slogan: “Kindness counts.” But while kindness counts, listening and understanding can go much further.