Awareness over Acceptance: The Problem with Autism Speaks
On Tuesday, April 2nd, you may see blue lights on buildings, such as The Empire State Building, to support World Autism Awareness Day in conjunction with Autism Speaks. What many people don’t know is that Autism Speaks is actually a problematic organization that stigmatizes and limits the voices of those with autism, rather than provide support. As an autism awareness advocate and former Autism Speaks board member, John Robison said in his resignation letter, “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 Autism Speaks’ 27 current Board of Directors, surprisingly, zero have autism. This lack of representation shows that the organization is not there to support people with autism. Autism Speaks receives much of their attention from parents of young children with autism who are looking for a support network. Autism Speaks is seen as the “default” organization for those with autism.
Autism Speaks puts the vast majority of their funds towards fundraising, awareness campaigns, and research. The organization portrays autism as a scary, life-ruining disease, when in reality people with autism can live healthy lives. The awareness campaigns of Autism Speaks are heavily skewed towards extreme cases and young children, ignoring the needs of “high-functioning” autistic adults who need support.
Instead of focusing on “Autism Awareness through Autism Speaks, show your support for autism acceptance by supporting The Autistic Self-Advocacy Network (https://autisticadvocacy.org/ ) or The Autistic Women and Nonbinary Network (https://awnnetwork.org/ ). In addition to being run by people with autism, these organizations provide direct resources, support communities, and a voice for advocacy for people with autism. Instead of #LightItUpBlue for autism awareness, try #WearRedInstead for autism acceptance.