Beyond FACTS: LOOK ME IN THE EYE: MY LIFE WITH ASPERGER’S by John Elder Robison
I skipped over to John’s blog after reading a series of intriguing posts on Kristen’s From Here to There and Back yesterday. Her November 6 post links to Kim Stagliano’s “The Boys on the Bus,” an essay that sheds remarkable light on why the American Academy of Pediatrician’s recent reports regarding early diagnosis have been received by parents of children with special needs with more than a little skepticism. Not only is Stagliano’s essay chock full of insights, but Kristen’s visitors (most of whom are parents of children with special needs) reveal in their many comments the blunt realities of dealing with so many professionals unable to serve the children they’re supposedly trained to help.
I found these sentiments echoed in one of John’s recent posts, in which John and his visitors discussed how people with Asperger’s are treated outside the United States. When Australian and Asian cultures were mentioned as potentially open-minded and considerate of people with Asperger’s, one parent told of the troubles she encountered when she tried to get help for her son while in Australia. It seems medical professionals and educators around the world remain far behind on the learning curve compared to the parents and guardians of children with various forms of autism and other special needs. One of my favorite comments from Kristen’s blog on this issue is from a visitor identified only as James: “They (medical professionals and educational leaders) couldn't see the coming crisis and now, faced with the issues being raised here continue to scream it ain’t so. It IS so. It CAN be helped. It can be countered. It takes a deep concern washed by love.”
“A deep concern washed by love.” How much that says. Thanks, James.
While I don’t have a child with special needs, I grew up next door to a foster family and babysat over there for years. One of the children they adopted, Mark, was autistic to such an extent that he did not speak but communicated primarily through gestures and noises. He was high-energy and always on the move, with thick curly hair and big brown eyes, and he seemed to prefer wearing no shirt; maybe that’s why I remember so clearly how thin he was, from his ribby torso to his long skinny arms and legs. We called him Marky for a long time, but once he started school his mom asked us to call him Mark. (I say “us” because my sisters babysat over there a lot, too. It was another VERY busy household.) Soon the sight of Marky running in circles around the tree in his front yard with hardly any clothes on gave way to the sight of Mark, fully clothed, name-tagged and with a backpack, climbing onto a special little school bus that seemed to appear and reappear just for him.
I don’t know what school Mark was bussed to and I never heard him speak, but when I was in college his dad, whose background was in education and who served on the local board of education, was thrilled by advances in technology that allowed a child to “speak” by typing on a keyboard. I know this technology remains controversial and that some argue that aides helping students actually control the process, but I also remember another autistic boy I babysat being quoted in an article in the Syracuse Post Standard as saying hello to his beloved parents for the first time. This second boy was much older than Mark when I babysat him, and I was completely untrained for the experience and did not excel at that job. I was the overachiever college student trying to make extra money while juggling a dozen other demands; needless to say being exhausted and impatient doesn’t bode well for working with anyone with special needs. I have a feeling many parents find the professionals they’re dealing with on a daily basis are juggling much more than they can handle as the diagnosed cases of autism continue to rise to epidemic levels. It seems a troubling cycle that needs to be addressed by our school boards and governing powers from county levels on up.
I returned to wisegeek.com for definitions on Asperger’s Syndrome and the autistic spectrum. Suffice to say that AS, a neurobiological disorder, is currently considered to be part of the autism spectrum, but that people with AS often function on a very high level intellectually. John Elder Robison, for example, has an unusual ability to “visualize electronic circuits” that led to his design of some amazing guitars for KISS when he was a young adult. Now he repairs (and could probably rebuild) high-end cars.
The autistic spectrum refers to a spectrum along which people may be placed based on the autistic traits they demonstrate. Autism is a disability that stems from problems with the central nervous system. It can impact communication, social functioning, and creative thinking. I’m not so sure about that last one, though, since the people I’ve known and read about who are considered autistic say and do some incredibly creative things. Bottom line: they’re people. Hopefully blogs like Kristen’s and her friends’ and books like John Elder Robison’s will continue to drive that fact into the brains of the rest of us “normal” folks.