By James Williams, SafeMinds Education and Outreach Committee Member
Many parents in the biomedical-based autism community hope to celebrate a child’s recovery from autism. They may rejoice if their child’s medical issues have improved through a biomedical intervention. They may celebrate the improvement of a child with autism whose behaviors have improved through a special diet. Or they may reward a child with autism who develops language skills by responding to a request that the child gives, which may be the child’s first verbal request.
However, whether or not a person’s autism was caused by environmental pollution, the adverse reaction of a vaccination, the effects of a genetic susceptibility to autism, or a series of other causes, one thing remains the same. Autism is not merely a disorder comprised of medical symptoms, behavioral symptoms, and communication issues. Some of the most significant symptoms that comprise autism are social issues.
It is easy to look at social issues solely on the basis of the social deficits of the person with autism, and to analyze how a person with autism can make mistakes in various social settings. But social interactions, by definition, work both ways.
Social interactions involving a person with autism don’t just involve the person with autism and any social deficits that he/she may have. They also include anyone else with whom the person with autism interacts during the social exchange. Further, just because a person with autism works his/her best to behave appropriately towards others does not necessarily mean that everyone else is working hard to behave appropriately towards them. No intervention can stop a person from taking advantage of a person with autism because of a perceived vulnerability, or from being intolerant, insulting, and/or bullying a person with autism.
The use of medical interventions can help children with autism recover from their medical issues, and sometimes improve their behavioral and cognitive functioning. It can sometimes enable a child with autism to improve to the point that he/she can be considered “recovered.” However, just because a person with autism has recovered from many of their behavioral, cognitive, or medical issues does not necessarily mean that all their social issues have disappeared. Nor can the use of biomedical interventions effectively eliminate the strong social anxiety that living with autism brings to many with the disorder. This may either present as a symptom of autism, or as the byproduct of living in a world where people suddenly reject people or shun them for reasons that are difficult to understand.
It’s also easy to forget another reality that most individuals with autism face, regardless of their functioning level—when you have autism, society treats you differently than people who are neuro-typical. People with autism are sometimes subject to different social rules and expectations, regardless of how far a person with autism has “recovered.” Things that non-autistic people engage in freely are often treated as “high social crimes” when you have autism.
I learned this first-hand when I was in high school, and I innocently asked a girl in special education to go to our school’s homecoming dance with me. The request terrified her, and I apologized to her politely. I was reprimanded by a social worker for committing a “high social crime” for having the nerve to ask her to the dance. The social workers made clear to me that asking someone out to a dance is considered a social violation. Consequently, I never asked anyone to go to any more dances with me, and the girl whom I had asked to go to homecoming with never talked or spoke to me again. The teachers took no initiative, and gave no efforts to repair the damage of my social mistake. Meanwhile, my neuro-typical male peers were routinely asking girls to go to the dance with them, yet no one reprimanded them if a girl refused to go with them.
Social rules and expectations change as a person ages. A child with autism who has recovered from many of his/her biomedical and behavioral issues, who may be able to meet all the rules and expectations of childhood, may eventually realize that when he/she grows up and reaches adolescence and adulthood, it is difficult to meet new developmental expectations that emerge in adolescence or adulthood. By way of example, a five-year-old who is unable to drive a car, keep a secret, or hold down a job is not considered disabled for doing so, since we don’t expect five-year-olds to do these things. However, an adult who is unable to do these things is considered disabled. I discovered that I was unfit to drive a car in adolescence, and was even declared in court unfit to drive as an adult. Further, I have met countless adults with autism in my work as an autistic self-advocate who have failed to hold down a job because they were unable to meet specific social expectations in the workplace—even those adults who were considered “higher functioning” as children.
SafeMinds works hard to try to promote research on the environmental contributors to the development of autism, and I will always support their mission. And as a person who has recovered from many medical issues through biomedical interventions, I will always support and promote biomedical interventions for autism. I will also always support any effort to try to end our current “autism crisis.” Unlike many other self-advocates with autism who are offended by the idea of an “autism crisis,” I do not disagree with the idea that autism presents a crisis in the United States.
Why is this so? Because although I may feel pride in having autism, that doesn’t mean I’m not aware of how debilitating autism can be for many people and their families, nor has that stopped me from facing the reality that autism brings me many difficulties in life.
Having autism has rendered me unable to do many things that other adults take for granted—I am unable to drive a car, pursue higher education, hold down a job that enables me to support myself financially without the assistance of my parents and disability benefits, pick up nonverbal communication cues, social cues, and unspoken social rules, and live a completely independent life from my parents. Contrary to what many people might think, my autism is not an excuse for my inability to do those things, it is the reason why I am unable to do them.
We all need to remember that autism consists of a spectrum of symptoms–biomedical, behavioral, communications, and social–all of which require different types of interventions. No intervention can address all of the symptoms of autism–nor does the improvement of some symptoms of autism equate to a full recovery from autism. I have recovered from many biomedical issues, including life-threatening issues that struck me as a pre-teen. But I will always experience social struggles related to my autism.
For these reasons, I will always support SafeMinds’ mission, and am proud to serve on its Education and Outreach Committee.
