Tuesday, April 24, 2007

Whose Stigma Is It Anyway?

This is in response to a recent post by Atilla The Mom. Please read it here first.


I've been "busy" lately so I haven't had much time to visit. It is interesting to me that this is the post I came back to.

While I won't claim to know a whole lot about Autism or Asperger's syndrome I will say that I have worked with a few identified students in the past 10 years, so I have at least some familiarity. Although one student, a third grader, showed an amazing proficiency at the piano and another an eighth grader, held more than a passing affinity for WWII aircraft neither of these students fell into the category of circus freak, organ monkey or as you so delicately put it, “retard”. Rather, they were all young men (coincidence?) attempting to navigate the already challenging environment of 21st century life with a disability that I don’t think any of them completely understood.

As for their parents, I will say that although none of them came across as sympathy-seeking victims, it was nonetheless clear that each felt at least some sense of skepticism regarding the way the general population viewed their child, and thus them. I believe the general population has an extremely limited understanding as to what Autism is and is not, as you know all too well. Those of us charged with educating students living with Autism are in some ways ahead of the curve in terms of our understanding and yet we too have an enormous learning curve when it comes to how this particular disability plays out in real life.

I remember one young man I worked with named “Ben”. He was a 4th grader diagnosed with Asperger’s, AD/HD and Tourette’s, all for which his parent’s were unwilling to consider medication as a possible tool. Add to that the fact that he was identified as Gifted/Talented and enrolled in a GT magnet school and you can imagine that I had my work cut our for me.

Near the end of the school year it became clear that the everyday routine of 4th grade life was just a bit to structured for his tastes. Eventually the decision was made to provide him with home-based instruction and allow him to finish the school year under the care of his parents. Although I’m a social worker not a teacher, I was the only one who volunteer for the job so I was assigned as his home-tutor.

Four-days-a-week I would go to his house and try as best I could to teach math, reading and science. Half of our time was spent discussing everything other than his school work, while the other half was spent trying to retrain our focus. Week after week went by and my sense of hopelessness increased with each lesson. I often left feeling as though I had failed in attempting to connect with this young man (let alone teach) and had wasted his and his parent’s time.

On our last visit Ben gave me a card that he had made on the computer. The cover featured a bloody skull with the eyeballs hanging out and a huge axe slicing a diagonal gash the sizes of a small canyon across the top of the head. On the inside he had written, Thanks! in blue crayon. It was at that moment I realized he had been with me all along. He wasn’t some possessed miscreant hell-bent on making our time together as miserable as possible. The trouble wasn’t that I couldn’t connect with his but that I was unable to see how I had. Clearly I was the one with the problem not him.

Which gets me to the part about Stigma.

As a school social worker I had been trained to be wary of any expression of violence, death or destruction on the part of our students. This was right around the time of the Columbine High School shooting so we were told to pay close attention whenever a student demonstrated any fascination with the killing. The card naturally threw my colleagues into a collective tizzy over the “horrendous” depiction. Many a hand was wrung at “what else this child might be capable of” and the sort of home environment his parents provided. Not just a few judgments about them were passed. I however knew that in his own twisted way, he was truly and sincerely offering gratitude in a manner that made sense to him. After all, if he’s delighted by the sight of decapitated cartoon heads, shouldn’t everyone be?

That was the last time I ever saw him as I took new job later that summer. By now I would imagine he’s graduate from high school. I hope so. Nonetheless, I have no doubt that he and his parents have spent the last decade dealing with all manner of disrespect directed both at him as a person and them as parents. I would guess that at times it could become overwhelming. Even stigma generating.

That’s why I wasn’t surprised to see that an organization would want to eliminate the stigma of having a child with Autism. A little off the mark to be sure, but not an entirely bad goal in and of itself. The question is how are they going to go about doing that? Through lovingly caring for family members and providing them with every opportunity to enjoy the same things from life that all children share? By passionately advocating for the rights of people with Autism and removing barriers to success wherever they may exist? By educating anyone and everyone with the truth about what Autism is and is not? Or by suggesting that autistic children be drowned in the pool out back?

While I’m sure Autism Speaks would deny an outward endorsement of disability-based genocide their goal of “a world where no family has to live with autism” is specious to say the least and speaks volumes as to their true mission. Again, it all comes down what you do with what you are given. AS communications would indicate, as you have suggested, that their aim is self-serving and pity focused. Clearly they seem to be hurting rather than helping the cause of Autism awareness. But I also believe that there is truth to the statement that parents suffer, indeed in a much different way, from the misinformation and stigma of living with, raising and loving a child with Autism.

I can read it in your posts.

Your friend,



Attila The Mom said...

Really loved this, Sven. Thanks so much for sharing your experiences and thoughts. :-)

heartinsanfrancisco said...

I thought this was an interesting and well-thought out commentary which complements Attila the mom's post well.

It's evident that there is a huge amount of ignorance and misinformation around, and clear and honest posts like both of yours can only help to educate those of us who have so much to learn.

From where I stand, anything that marginalizes or demeans children or their parents is terribly wrong, and spreading knowledge around is the best place to start.

Thank you both for your informative and love-filled posts.

Rhonda said...

What a thoughtful post, Sven.