By Charlotte Hudson, Staff Writer
When I was diagnosed with autism at the age of two, my parents’ primary focus was helping me live a healthy and fulfilling life through the possible trials and tribulations I was expected to undergo.
In the twenty years that have passed since my diagnosis, autism has become accepted as a spectrum disorder, an umbrella that includes low and high-functioning variations of the disorder (and will include Asperger’s Syndrome this May.)
Parents often feel helpless when their children are given the initial diagnosis. My own parents delved deep into researching autism disorders and took me to therapy sessions at the TEACCH Center at UNC-Chapel Hill.
The determination to find a cure for the disorder is led by supporters of Autism Speaks, an organization devoted to autism awareness. According to the official website, Autism Speaks is “dedicated to funding research into the causes, prevention, treatments, and a cure for autism.”
The idea of “finding a cure” is not without controversy. Autism Speaks has been associated with controversy beginning with its treatment of autism as a disease. Autism Every Day, a 2006 documentary film sponsored by Autism Speaks, is infamous for its negative view on autism. The film follows mothers of autistic children and consists mainly of interviews with the mothers. The voices of the autistic children are essentially absent from
A review on the New York Times stated that “while the filmmakers capture, hope, love and determination, the documentary also reveals the unrelenting stress and occasional despair in rearing children with autism.”
One interview in the film that drew the most controversy was that of Alison Tepper Singer, who spoke of her contemplation of driving off a bridge with her autistic daughter.
Cheerful message, eh?
The main problem I have with this approach to autism awareness is not Autism Speaks’ goal of educating people about autism, but the way this organization uses their time and research to find a “cure,” addressing the disorder as if it were akin to AIDS or cancer.
Last time I checked, no one has been killed by their autism.
In contrast, the Autistic Self Advocacy Network, a non-profit organization, is run by and for autistic people. Their supporters include adults and youth with autism, neuro-diversity advocates and non-autistic (or neurotypical) family, professionals, educators and friends.
Unlike Autism Speaks, ASAN was created to provide support and services to autistic people of all ages. According to its website, ASAN “seeks to organize the community of Autistic adults and youth to have our voices heard in the national conversation about us.”
Autistic self-advocacy became organized in the 1990s when the American with Disabilities Act became law. ASAN was founded in 2006 and rose to prominence in activism circles after a successful letter-writing protest campaign ended NYU Child Study Center’s ‘Ransom Notes’ advertising campaign, which compared autism to a kidnapper
“snatching children from society.”
ASAN is an organization that I feel comfortable standing behind. People with autism know more about autism than their family and friends who don’t have the disorder, as supportive as they may be. It is the same with other minority groups. African Americans know more about their own culture than white people. LGBT folks know more about themselves and their struggles than their straight allies.
The autistic community doesn’t need organizations like Autism Speaks to do our talking for us.