Autism and Asperger Articles, Bill Stillman, Award-Winning Author

Demystifying Autism From The Inside Out

The Back Room Kids: Shame, Guilt and the Autism Myth

By William Stillman

Last fall, I made an autism presentation in Los Angeles to a group of 200 exclusively Spanish-speaking parents. They were grateful and gracious, and many made efforts to communicate with me in English (I otherwise had translators). When I stood before them, I affirmed that their autistic children are intelligent, gorgeous human beings entitled to the space they occupy. I was stunned by the collective reaction of the audience: people sobbed in relief; grown men, fathers, buried their faces in their hands; and others gave me their children’s pictures, asked to take my picture, or requested my inscription. I was overwhelmed, almost uncomfortably so. Here was a group of people who, as a minority, are already devalued in many ways; because of language barriers, some may have been perceived as gullible or unaware of their options as parents. They were so appreciative of a positive message, I thought to myself, “My gosh, what have these people been told about their children!” I surmised that each felt shame and guilt for parenting a child with autism.

What drives this kind of reaction? Two things, in my opinion. First, there is still a very prevalent medical model in how autism is defined. It is listed in the Diagnostic and Statistical Manual of Mental Disorders, which immediately sets the negative precedent that autism is a mental illness (it’s not) and requires intensive treatment. This is further perpetuated by some clinicians who are not sensitive or compassionate when making a diagnosis, or who are unaware of quality resources to direct parents to. (Inconceivably, there are still doctors who suggest that autism is attributable to parental blame, or recommend parents institutionalize their children.)

Second, the media often stigmatizes autism as a tragic affliction to be feared or pitied. In addition to Asperger’s Syndrome, I have a same-sex orientation. I would no sooner expect an interviewer to define my sexuality using a derogatory slur because it would be an outrageous violation, yet it is presently acceptable for the same interviewer to describe me as “suffering from a severe disorder.” Until the Rosa Parks of autism emerges, this will persist. At the least, much media representation of autism reinforces antiquated stereotypes, and that is a disservice.

From the outset, many parents are portrayed a grim projection for their child’s future. They are led to believe their children with autism are incapable, unaware and of substandard intellect, a lost cause that will always function at the level of a four-year-old, even as an adult. This often results in parenting approaches of two extremes: tireless endeavors to eradicate autism through high-cost, intensive, one-on-one (adult to child) behavior therapy for countless hours on end (that, in some cases, may involve a regimen of physical restraints and anti-psychotic medications). Or it results in the "back room kids."

The proper response to autism is to re-envision it as a neurological disconnect relative to those with Cerebral Palsy, Tourette’s, Hodgkin’s, Parkinson’s, Lou Gehrig’s, recovering from stroke, or any other such experience that compromises brain-body connections and impairs movement or articulation of speech. Even though the physical is unreliable or not of good service, the cerebral is intact, thought processes operate at capacity, and mental capability is completely competent (it just doesn’t measure that way through I.Q. scores). There is emerging scientific research to support the re-evaluation of autistics using non-verbal intelligence testing to reveal their true intellect commensurate with, or beyond, their chronological age. Some parents who don’t foresee true intellect as a possibility for their children, due to the preceding conclusions, have bought into the myth of autism—that is, autism equals intellectual inferiority or mental retardation. In addition to shame and guilt, despair, denial and hopelessness may prevail. The thinking may become that of day-to-day maintenance and minimal standards of care giving. Hence, the back room kids.

I see them, watching me from their baby-gated existence of the screened-in porch or the distant bedroom at the rear of the house. Many of them don’t have much meaningful connection with their families. They have free-reign to do as they please because parents are afraid to apply fair discipline or have been told not to because their child won’t understand. Some back room kids are overweight, have poor diets and are provided age-inappropriate books, toys and videos. Some are still on bottles and in Pampers at age five…six…nine. This is unacceptable.

When I meet them I think: "I see you there, little one. You with your grubby bag of orange cheese curls and the Veggie Tales video repetitively looping. You with your bright, glistening, welcoming eyes. You with your hunger for knowledge and information beyond the back room, or even your back yard. I see how very smart you are inside. I see you."

Refusing the myth of autism, building relationships founded upon a belief in competence, and challenging autistic intellect is what will create a cultural shift for the growing numbers of very young children diagnosed with autism each day. It will also yield hope for the adults with autism who have endured in silence, only offered Little Golden Books, Strawberry Shortcake puzzles, and Lady and the Tramp videos.

The regrettable irony is that we have a long and unfortunate history of back room kids—"retarded defectives" as they were once known—only, in another era, the back room was confinement to the basement or an attic. Shame and guilt were very much a motivation for those parents then as much as it is for some parents now.

Isn't it curious that what’s called for is simply acquiescing our own agendas and compelling ourselves to be more sensitive—to listen fruitfully with our ears as well as our eyes? We’re not only talking about presuming intellect, we’re talking about demonstrating a renewed respect.

© 2008, William Stillman

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