Nothing "Mild" or "Glamorous" About Asperger's Syndrome

A feature article in the September 2009 edition of O: The Oprah Magazine entitled "An Inconvenient Youth" highlights a group of mothers and a father who have bonded due to their children's autism. Their stories are inspiring and thoughtful, as readers learn about their unwavering dedication to helping their children and dealing with stigma associated with autism.

Yet in its goal to reveal the depth and difficulties that autism can bring to one's life, the article manages to undermine a particular autism spectrum disorder known as Asperger's syndrome.

The article, written by Cintra Wilson, features this quote:

"It's a running joke. Admitting your child 'simply has autism' (as opposed to the milder and comparatively glamorous Asperger's syndrome) is similar to introducing yourself at an AA meeting with 'Hi, I'm ____ and I'm an alcoholic."

The quote is in reference to one mother's declaration that her ten year-old son "does not have Asperger's! He simply has autism!" It is supposed to convey the difficulty of accepting the fact that a child is on the autism spectrum. However, I find that comment about Asperger's both ignorant and offensive. People with Asperger's don't always have the benefit of a diagnosis, and they are often so misunderstood. Children, teens, and adults who work daily to manage the varying degrees of Asperger's--and its tag-along issues like OCD, anxiety, panic attacks, depression--may not find their lives so "glamorous."

Cintra Wilson's article highlights the strength of a tight-knit group of parents who champion their autistic children and struggle with their own issues as they parent their individual kids. Their courage is admirable as is their tenaciousness--however, in using a biased "comparison-contrast" approach to illustrate the different manifestations of autism spectrum disorders (ASD) is ignorant and demeans the struggles of the Asperger's individual and his/ her family.

My son has Asperger's syndrome. There has been no "glamour" in my son's depression or in his social awkwardness. There has been nothing glamorous in his pursuit to find out why he's different from the mainstream child/teen, or why he suffers from anxiety, insomnia, and alienation. Dealing with bullying from peers and ridicule from teachers have never once felt "mild" or "glamorous"--and I have not found anything glamorous about my tears or his as we have spent seventeen years with an undiagnosed ASD, because Asperger's syndrome only hit the scene in 1994*, and it is still misdiagnosed and misunderstood in the medical community. A child with autism can be diagnosed at an early age and intervention can start. Yet a child with Asperger's is "shy" or "awkward" but "verbal" and "smart," while not fitting in with peers or lagging in school.

Please, tell me--where is the glamour? What is "mild" about high-functioning autism? To truly understand any ASD, constructing a journalistic, comparison-contrast -Venn-Diagram is not the best approach. My son may hug me and he may be in high-level academic classes, but he struggles for hours each week to succeed and to survive in a world that doesn't yet understand him--and sadly, evident even in Wilson's article about autism, there are those who navigate the autism community and classify their cases as "severe" and the Asperger's cases as "mild."

What is most disheartening is how an article that is meant to explore the strength of autistic children and their parents dismisses Asperger's as an ASD that is preferable to the weighty diagnosis of "Autism." This perspective is ignorant; instead of comparing apples and oranges (both fruits, yes?), I would have preferred an article that embraces the complexities, challenges, and courage of ANYONE who has autism --or who cares for the autistic child/teen/ young adult. Unfortunately, this flippant comment undermines the Asperger's community with its loaded language. Like any ASD, Asperger's varies in degrees--from more severe to higher-functioning, and nothing about Asperger's syndrome is what I would define as "mild" or "glamorous."

Near the end of Wilson's article, the parents discuss Jenny McCarthy's controversial Generation Rescue, which promotes the notion that autism is primarily caused by vaccinations and can, in fact, be reversed. The author writes that "Generation Rescue's dominating and oversimplifying the conversation in America about autism" bothers the group because not all autistic children "recover," and this attitude suggests that an autistic child cannot be accepted for who he/ she is. The irony is that in featuring a callous remark --"as opposed to the milder and comparatively glamorous Asperger's syndrome"--the article is oversimplifying Asperger's syndrome and its particular complexities.

According to recent studies, every six out of a thousand people have an ASD. That means there are a lot of families who are experiencing personal, financial, and spiritual struggles--and not one of those families should be undermined in the quest to illustrate another's strength of character.

*Note--Although Hans Asperger, an Austrian physician, first identified the disorder in 1944, it wasn't until 1994 that the American Psychological Association recognized Asperger's syndrome as a pervasive developmental disorder.