Autism: Identity or Disability?
Disease, disability, identity—it’s more than semantics. And while most embrace the idea of a supportive culture, others worry that embracing autism as an identity encourages parents to forego important interventions that could make life easier and happier for their children. Phyllis Wheeler’s brother and two of her four children have been diagnosed with ASD. “I accepted it for a long time,” she says. “Then I read about some people whose kids had recovered.”
At that time, her son was just about to start high school and was on three psychotropic medications. She says he was full of negative emotion and failing the majority of his classes. She embraced an alternative supplements therapy that she says turned things around for him. “It’s not like he could suddenly relate to people, but he could do his work and he wasn’t full of all this hostility.”
Now both of her children are out of the house; one has graduated from community college, and the other is enrolled in a four-year college. It is upsetting for her to see parents ignore alternative therapies that could potentially lead to recovery. “If I had done none of these things for my children, they would be on disability,” she says.
Young and others agree that there should be intervention and therapies for the autistic. Living in a world full of people whose brains develop very differently from yours is clearly a challenge. Their qualms lie with the type of intervention, such as approaches made up of countless hours of therapy and intervention for young children in the hope of correcting or stamping out odd-looking behavior. Instead, they support the social model of therapy. For example, rather than forcing an autistic child to make eye contact because it is the “normal” thing to do, the therapist or parent should explain to them why it is important for neurotypicals to have eye contact.
Jill Irvin, a stay-at-home mom in Portland whose son is autistic, says that when he was first diagnosed at the age of 2 and a half, her focus was on a cure. She would create lessons to either teach him a skill or eliminate certain inappropriate behaviors, but she found this was stressful for them both. Years later, she found that the best approach was also to allow the occasional inappropriate “stimming,” a word that refers to self-stimulating behavior, such as jumping and singing. “For my kid, I’m attracted to the approach that says he can learn and have these behaviors,” says Irvin, who is launching Promoting Independent Experience (piepdx.org), an online volunteer job placement site and autism resource this fall. Irvin’s goal is for her son to eventually understand when certain behaviors are or are not socially acceptable.
The effects of autism are wide-ranging, which makes disagreement over how it should be viewed and treated even more prevalent. Lynn Vigo is a family therapist at Seattle Children’s Autism Center who has a 17-year-old daughter with autism. Her daughter is nonverbal, not fully toilet trained, cannot explain how she is feeling, and has ongoing struggles with her health and behavior.
“We have daily difficulties that require 24/7 oversight for her safety,” Vigo says. Because of that situation, Vigo’s feelings about the disability are in some ways different from Young and his peers. “She has autism,” Vigo says. “I do not like the term ‘autistic’ because it does not define her. She has autism the same way she has big brown eyes and asthma and dimples and no patience in her being. None of those things alone define her.”
While Sara Gardner, a program manager of the Autism Spectrum Navigators program at Bellevue College, learned as an adult why she had always felt different, it was her son’s childhood diagnosis with ASD that helped to form her views on how best to manage the condition. She connected with online groups that showed her how to emphasize and build on his strengths, rather than focusing on his deficits. She believes the positive feedback he has received both from her and others has allowed him to grow emotionally and attend DigiPen Institute of Technology.
Gardner remembers one positive moment in particular that came soon after she told him he had ASD. They were living in California at the time, and he was instant messaging with a friend in Seattle. He told his friend that he was on the autism spectrum and explained to her what that was. And she wrote back, “Well that doesn’t sound like a disability, that sounds like a gift.”
*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.