Anne-Catherine Schaaf ’22
When I saw the Fenwick Clock Tower lit up blue weeks ago, at first I was confused. Had we suddenly changed our school colors and I had simply been too caught up in homework to notice? However, when I when I saw the banners across campus promoting Autism Speaks, I understood. However, I don’t agree with it. I do not believe that the College of the Holy Cross should promote Autism Speaks. Over the past few years, I’ve become more aware of the issues autistic people face in society. However, this wasn’t due to any effort on the part of Autism Speaks. It was actually in opposition. The autistic bloggers and autistic led organizations like the Autistic Self Advocacy Network that I read were all firm opponents of Autism Speaks, with some individuals even going so far as to call them a hate group. I’d be the first to admit that my knowledge on this issue is still limited, but there is compelling evidence that leads me to believe that Autism Speaks doesn’t respect autistic voices and shouldn’t be promoted on a campus that strives for respect for all human beings.
According to the Autism Speaks’ tax records for 2017, only 1.6% of their revenue goes towards providing services for autistic people and their families, with ten times as much spent on fundraising. The primary goal of the organization is to end autism, and as stated in a letter by over 60 disability rights organizations to the supporters of Autism Speaks, ‘‘while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing.’’
According to the Autistic Self Advocacy Network, Autism Speaks’ fundraising strategies “promote fear, stigma, and prejudice against autistic people.” Their marketing tactics such their 2009 “I am autism” video, have been denounced as hurtful and offensive by many autistic people. In fact, their very logo reinforces problematic assumptions. The blue puzzle piece is blue to represent autistic boys and men, due to the stereotype that autism predominantly affect males. However, that statistic is debated, as the diagnostic criteria for autism are organized around typical “boys” behavior, while girls and women are much more likely to be under or misdiagnosed. The puzzle piece itself to bloggers like Alex at autisticalex.wordpress.com, “implies that we are something to be solved or fixed, which simply isn’t true.”
The organization consistently speaks of autism as disease that needs a cure, and has compared to AIDS, diabetes, and cancer. Suzanne Wright, the cofounder of Autism Speaks, described autism as “a monumental health crisis” in the 2013 op ed “Autism Speaks to Washington- A Call for Action”. In the same op ed, she compared the 3 million children diagnosed with autism to a 3 million children going missing or falling gravely ill. Peter Berns, the CEO of the The Arc, a national disability rights organization, responded: “Characterizing people with autism and their families as victims suffering from a dreaded affliction ignores the diversity of the community of people with autism, as well as their creativity, perseverance, adaptability, resilience, and overall beauty of their human spirit. It belittles the many who, rather than seeking to be cured, are striving for their human rights to be accepted and respected.”
The op ed has since been taken down from Autism Speaks’ website. Nevertheless, many prominent disability activists and individuals continue to critique Autism Speaks for their use of scare tactics, hostile and stigmatizing language, and failure to actively incorporate the voices of autistic people. Currently, Autism Speaks only has 2 autistic members out of 26 members on its board of directors. John Elder Robison, an autistic individual who formerly worked with Autism Speaks, summarized in his resignation letter the issues many autistic people have with the organization.
“I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.
…Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”
Of course, I don’t want underestimate what important work for autistic people Autism Speaks has actually done. In Massachusetts, for example, they’ve successfully pushed for legislation mandating that insurance companies pay for therapy for children with with autism. They’ve also helped spark a national conversation about autism, and I don’t doubt that the founders had good intentions. However, when it comes to meaningfully educating people and working to create a society more friendly towards people with autism, Autism Speaks fails. They have shown themselves to be actively harmful and dismissive towards autistic people, completely at odds with our college’s goal of following the Jesuit principle of respect for all human beings. There are better organizations, like The Autistic Self Advocacy Network, The Autistic Women & Nonbinary Network, and Self Advocates Becoming Empowered that prioritize the voices of the people they claim to represent,and are more worthy of promotion on campus. If the College of the Holy Cross truly wants to create a space that’s welcoming for everyone, autistic and allistic alike, then they should listen to and promote the voices of actually autistic people-not an organization that denies them basic agency under the pretext of speaking for them.