It’s April, the month that the snow melts, the flowers start to bloom, and Autism Speaks inundates people with their annual Light it Up Blue campaign. While probably the most recognized autism organization in the United States, it is widely criticized by the autistic community and many of their allies. To be a better friend and ally, I decided to research why the autistic community largely rejects Autism Speaks as an organization. What I found made the passing negative comments about the organization crystal clear (and caused a few tears).
Problems with AS
One of the first things I noticed while doing my research is the way Autism Speaks portrays autism. They rely heavily on the negative aspects and seem to feed the fear and stigma that already exists surrounding the neurodiversity diagnosis. For example, in the pulled advertisement called “I Am Autism,” an ominous voice talks about all the horrible things autism will do to someone and their families. Taking voices away, making marriages fail, bankrupting families, causing children to embarrass families, and destroying all hopes and dreams for an individual’s family and the autistic individual.
Although I believe it is important to recognize and acknowledge the fear and hardships that come with a medical diagnosis of any kind, including autism, it is equally important to show the good days and positive experiences that autism families experience. Not every day is, or will be, a “living hell” as one family so bluntly states it is. The documentary, Sounding the Alarm, portrays autism as a horrible burden and goes on and on about all the awful things that will happen to families of autistic people. There is little positive and reassuring messaging put out by Autism Speaks that does not come from a misguided place. By framing autism as an epidemic, crisis, and battle, it spreads the message that people must fight against their natural way of being.
For the amount of advertising material, I found focusing on family and medical cost hardships, I was awestruck to find that the organization only spends about ≤ 5% of their budget on direct family services and supports. I even looked at their most recent 990 tax form to double check the numbers myself and the facts were true. If one of Autism Speaks major goals is to help individuals with autism and their loved ones, their budget should reflect that intention.
Autistic vlogger Amythest Schaber’s video entitled Ask an Autistic #6 – What’s Wrong with Autism Speaks? explains that autism is a developmental disability that affects how a person’s brain is wired and causes varying differences in processing and understanding of the world. While the idea of a “cure” may sound positive, it is not something that will ever be able to be cured by means other than terminating pregnancies and eliminating neurodiverse lives altogether. When autistic people hear about the “necessity” for a cure, they hear the message that their lives are not worth living as they are. They hear that they are burdensome and broken.
The exploitation of the need to fight autism overshadows the idea of working with autism to help people with what they want help with. It’s undeniable that autism will come with frustration for both the individual and their families, and there are likely to be very challenging times, but the harder people try to “stop” autism, the harder it is for the individual to advocate for themselves and have a sense of authentic self-worth. If everything you heard from an organization, and potentially your parents, family, and the community was about how you needed to be taught to behave neurotypically and how they had to fix and cure you, would you be able to be proud of yourself as you are?
Lastly, the organization has little, if any leadership with autism. While the board has a few parents and family members of autistic people on it, there are no known autistic individuals. In fact, around 2011, John Elder Robison, an autistic man, resigned his token position on the Science and Treatment Boards, (his only formal connections to Autism Speaks), after four years because he realized his input was not valued or taken seriously. He discusses his efforts to defend Autism Speaks while trying to create change from within and ultimately states that it was no longer possible to support an organization that had made no attempt to listen to his suggestions. He lays out the fact that the organization could make changes and become a truly stellar organization because they have the funds to do so. He calls for meaningful changes within the organization, giving people with autism a substantial voice in their governance, and shifting their focus (research) to one that would truly deliver on the promise of the funds raised (services).
What Can I Do to Support Autistic People?
It is important to know there are many alternative organizations and resources to Autism Speaks that I have linked in this paragraph. Organizations such as the Autistic Self Advocacy Network, Autism Women’s Network, Ed Wiley Autism Acceptance Lending Library, and Parenting Autistic Children with Love & Acceptance offer wonderful resources about autism based on understanding and acceptance. For more personal resources, check out Lydia Brown, Amythest Schaber, Alyssa Hillary, Erin Human, and Radical Neurodivergence Speaking.
Being close to someone with autism currently, and my experiences in the past with other autistic individuals, it troubles me that an organization started to “help” people does so little to actually help their families. It is one thing to work with autistic people to ensure they can lead a happy and healthy life and another to be furiously working to eradicate autism altogether. If Autism Speaks wants to focus on research and not on direct services that is their decision, but they should focus on things that will help current autistic individuals lead happy and healthy lives. The autistic community wants research on communication methods, the frequent overlap between epilepsy and autism, the prevalence in Ehlers-Danlos syndrome and related connective tissue disorders in autistic people, common sleeping disorders, and the gastrointestinal issues that are extremely common for autistic people. They also want research on topics like employment, housing and various other obstacles many people face trying to fit into the neurotypical world. As John Elder Robison so eloquently said in his resignation letter to Autism Speaks:
“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.”
Autistic people DO have a voice, and an absolute right to have nothing decided or done about them, without them.
Erin Vallely lives with a rare form of muscular dystrophy and is a proud wheelchair user. Having graduated with a B.A. in Sociology and Anthropology with a Spanish minor from Wells College in Aurora, NY, she plans to pursue a career in disability rights advocacy and public policy. In her spare time, Erin enjoys reading about other people’s experiences, supporting other minority groups, and traveling.