April marks the beginning of Autism Awareness Month and Autism Speaks’ “#LightItUpBlue” campaign. Companies light up their company headquarters along with prominent structures such as the CN Tower, the White House, and the Empire State Building. Homes change their outdoor lighting. Thousands participate in the annual Walk for Autism Research program. However, despite the on-the-surface good intentions of Autism Speaks, the research organization’s rhetoric, sentiment, and actions has caused significant harm to the Autism community.
SUPPORT FOR JUDGE ROTENBERG EDUCATIONAL CENTER
Autism Speaks has been a partner of and actively supported the Judge Rotenberg Educational Center, a center that has been condemned by the United Nations on the grounds of torture. The Judge Rotenberg Educational Center is a residential center for individuals with developmental disabilities and emotional disorders. The center has administered electric shocks to residents for doing things as little as looking at someone the wrong way, or speaking when they are not spoken to. In 2012, a horrifying video was released to the public where a young man, Andre McCollins, is shown to be tied to a restraint board and shocked 31 times simply for not taking off his coat when he was instructed to. He was restrained for six hours. He is shown in the video to plead and cry “Please stop, please stop.” There have been six people that have died at the center with causes of death found to be electric shock and assault.
Though Autism Speaks released a statement condemning the use of electric shock in July of 2021, the organization did not even specifically condemn the Judge Rotengberg Educational Center. They vaguely referred to the center as “The one educational center for children with severe developmental disabilities in Massachussets.” Their vague statement and wording reflects the organization’s lack of advocacy and support for Autistic individuals and their families.
MISUSE OF FUNDING
As of 2020, 1% of funding goes towards “family service” grants and 20% of their budget goes towards fundraising. It has also been found that 21% of their funding goes towards advertising. Reports have found that some of their staff’s salaries exceed $600,000 annually, with the CEO reportedly making $370,000 as of 2021. The minimal funding sent to services and the six figure salaries of their staff display the self-interest driven nature of the organization.
EXCLUSION OF AUTISTIC VOICES
As of 2020, there is only 1 Autistic person out of 28 individuals on their Board of Directors. On the other hand, 23 out of 28 of the members represent corporations. These corporations include PayPal, Goldman Sachs, White Castle, FX Networks, Virgin Mobile, eBay, AMC Networks, L’Oreal, CBS, SiriusXM, American Express, S.C. Johnson, and Royal Bank of Scotland.
Individuals with Autism are not static. Some are non-verbal, while others do have extensive vocabulary. Stims vary, meltdowns vary, and behaviors vary–just like any other human being. There is a reason that the official name is “Autism Spectrum Disorder.” Lacking representation within the Board of Directors–and overriding them with the voices of corporations–causes families and individuals to be misrepresented and a lack of needs being met. The composition of Autism Speaks’ Board of Directors and their failure to address this issue further contributes to the ableism that is prominently present within our society.
The organization has enforced the sentiment that children with Autism destroy their parents’ marriages, despite research finding that divorced rates for couples with an Autistic child are no higher than general divorce rates. In their 2009 “I Am Autism” video, the narrator says, “And if you’re happily married, I (in reference to Autism) will make sure that your marriage fails.” Stigmas, notions, and sentiments like this create the harmful rhetoric that individuals diagnosed with Autism are burdens to society.
For decades, perhaps you could argue centuries, there has been a stigma around Autism that has hindered individuals in the Autism and Asperger’s community to get the aid that they need. Autistic individuals are dehumanized and families are ostracized. Diagnosis is viewed as a death sentence. Parents are told to see exorcists and priests. School districts and board directors subtly claim providing therapy hours and service funds are vain and futile. We fail to see that what we have normalized is the belittling of individuals who were made to see and express life differently from us, maybe sometimes more colorfully than us.
In response to Autism Speaks, many have been contributing to the #RedInstead campaign which aims to celebrate Autistic individuals instead of portray them as tragedies. In light of this, I ask you, dear reader, to light it up red instead. Light it up red in support of building up our Autism community instead of tearing them down. Show love and acceptance instead of simple “awareness” and isolation.
Charities and Organizations You Can Donate To Instead: