by Shenandoah LaRock
April is Autism Spectrum Disorder awareness month. This is when I see parents, friends, and peers “Light it up Blue” on their Facebook profile pictures in support of A.S.D. The pretty blue filters are products of Autism Speaks, America’s largest autism research organization. When the temporary profile picture expires, I do not see these allies again until next year. What I do see is continuous negative stigmatization of autistic people as infantilized people who are unable to self-advocate.
According to the Autism Speaks website, their improvements in the autism community include, “increased global awareness of autism, better understanding of the breadth of autism, and advocacy to increase research and access to care and support.” (https://www.autismspeaks.org/about-us). Bob and Suzanne Wright, who are the grandparents of an autistic child, founded Autisms Speaks in 2005. Since the organizations conception, it has been criticized from members of the A.S.D community because of Autism Speaks’ misrepresentation of A.S.D people and their lack of autistic board members. Non-spectrum people dominate an organization dedicated to helping the A.S.D community. How can people who do not experience the same realities as A.S.D people decide what is best for them? There is also the issue that Autism Speaks has framed autism as a medical condition that must be cured, implying that there is something wrong with Autism Spectrum, and that people that are on the spectrum are inferior.
In her essay “Representing Autism; a Sociological Examination of Autism Advocacy,” Anne McGuire states, “Instead of understanding disability as a medical condition located in individual bodies, the social model locates disability in the physical and social environments and in inter-subjective relations that work to disable impaired bodies. Disability becomes politicized as a category of social oppression and material disadvantage.” The way Autism Spectrum Disorder is represented in the mainstream media promotes the ideology that Autism is a an epidemic, something that parents should be worried about, and reminds parents to look for the signs of autism in their babies. This places much attention on the bodies of autistic individuals. As McGuire states, “This conception of autism, viewing autism as a disorder/series of symptoms creates a binary between the body and identity.” Autism is not something that exists separately from the self, or on the body, instead it is always apart of the identity of the individual. Someone cannot be Autistic and a woman, but instead is always an Autistic woman.
Furthermore, this viewpoint on what Autism Spectrum means for those that are on the spectrum is inferring that they are not viable simply because they are different from what is considered to be “normal.” “Normal” is a difficult concept to define. How do we decide what is normal? Who decides what is normal–when there are so many biological anomalies within society? Someone may look “normal” on the outside, but might be “abnormal” on the inside. Deciding that someone is either normal or not normal creates another binary system synonymous with good and bad, acceptable and socially unacceptable. Instead of advocating for ways to deal with people on the spectrum, maybe some advocacy groups ought to support self-advocacy as well as equal rights and opportunities for those on the spectrum.
One way to support the Autism Spectrum community is by getting involved in self-advocacy organizations.“Nothing about us without us” is ASAN’s mission statement (http://autisticadvocacy.org/about-asan/). The Autistic Self Advocacy Network “seeks to advance the principles of the disability rights movement with regards to autism. ASAN believes that goal of autism advocacy is a world in which autistic people enjoy equal access, rights, and opportunities”.
Another way to support the Autism Spectrum community and challenge the status quo is by sharing stories. Change starts small. It could be with something as simple as sharing your story. As I looked through Autism Speaks website it was difficult for me to find any material directed towards people on the spectrum. When I looked through ASAN’s website I found a page where those on the spectrum could share their experiences.
I encourage anyone that may be reading this to go forth and write your stories.
I see you.
I am listening.