Autism: Identity or Disability?

A push to treat autism as a cultural identity is challenging notions of it as a disorder
Sara Gardner, program manager of the Autism Spectrum Navigators program at Bellevue College, says her diagnosis of Aspergers at 41 brought with it relief, depression and ultimately acceptance

Redmond resident Sara Gardner always knew she was different. She graduated second in her high school class, but had very few friends. She was accepted into the National Honor Society and earned a New York State Regents scholarship, and yet was never invited to parties nor had a clue as to how she might attempt to be invited. The answer came in the form of a diagnosis when she was 41 years old—autism spectrum disorder (ASD).

This news was a huge relief. She found she took comfort in the fact that she now had a tangible, documented diagnosis for that difference that had followed her around her whole life. Soon, however, her relief led to an emotional landslide and she sunk into a deep depression. “Oh no, I have a handicap; all this time I thought I was so smart,” she recalls thinking.

With the help of an Asperger syndrome* (see footnote) support group, however, her final stop on this poignant ride was acceptance. The time she spent in the group (of which she eventually became president) showed her just how easily she could fit in and connect with the ASD community because of the many things they shared. “We really understood each other and had had similar experiences,” she said. It was here that Gardner first found herself diving wholeheartedly into a cultural identity she never knew existed, or dreamed that she would fit into so seamlessly.

The idea of autism as a cultural identity has been gaining traction among some of the estimated 2 million individuals in the country with ASD. This shift in perspective became the subject of a public conversation in Seattle this summer, when the Washington chapter of the Autistic Self Advocacy Network (ASAN) criticized advertisements for Seattle Children’s Research Institute on the sides of Metro buses that featured the smiling face of a boy and the message “Let’s wipe out cancer, diabetes and autism in his lifetime.”

Local ASAN members objected to the way it reinforced the idea of autism as something tragic and undesirable to be eliminated. Chapter leader Matt Young, who is autistic, explained that this sort of sentiment is an attack on who he is as a person. Not only does he believe this point of view creates psychological harm, but that it can lead neurotypical (a term used by some in the autistic community to describe those with typical brain function) parents to pursue what he considers desperate measures to try to fix the perceived problem.

Young and others in the autism community believe the focus should be on acceptance and appreciation, which, among many other things, includes calling those with autism “autistic people,” not “people who have autism.” “Putting it front and center challenges the idea that there’s anything shameful about being portrayed as autistic,” Young says.

The change is coming from inside the autism community, says Annette Estes, director of the University of Washington Autism Center. “There are more people than ever before that are self-identified and identified as having autism spectrum disorder who are very eloquent and who have very good communication skills,” Estes says. In a still small subset of the autism community, networking and discussions are now less focused on cures or ways to become more “normal,” and centered more on how to successfully navigate a world not designed for them. The documentary Neurotypical, which aired this summer, showed how there is even, among some with ASD, a reverse snobbism about the limitations of being merely typical.

*Autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder–not otherwise specified (PDD-NOS) and Asperger syndrome are grouped under one umbrella diagnosis of ASD in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition