Friday, May 13, 2011
As a person who works on behalf of children with disabilities almost 24/7, and who understands from an inside perspective what the term “disability” means to a family and a person, I must express my dismay at the media’s initial reaction to recently released research on the prevalence of Autism. Researchers working with South Korean children and families have reportedly identified a broad population of individuals with features of Autism who bring the ratio of incidence of the disorder from 1 in 110 (already shockingly frequent) to 1 in 38! Ultimately, this means that we can expect almost one in three of the toddlers in our homes and the students in our schools to show evidence of disordered development that can be recognized as within the range of Autistic Spectrum Disorders.
I found the recent discussion of this result in mainstream programming very challenging. On the Today Show (NBC), Dr. Nancy Snyderman, who is the program’s medical expert and knowledgeable on many issues that impact on the health of children and adults, suggested that this means there are many children in the population who have gone undiagnosed and untreated. She suggested that these children, previously missed, should and would now be recognized and receive remedial/rehabilitative services from medical entities and schools. The discussion swooped low over Silicon Valley, where many high functioning but nerdy, quirky people are now considered OK—successful, even—but would, with this redefinition, be revisualized as having an Autistic Spectrum Disorder. My question is, “Why?!”
I’ll admit I’ve shied away from writing about the other side of my “sandwich” from my Dad’s—that is, about my daughter. This is not because of what I would write about her impact on my life, but because she is much more likely to read it and that conveys, to me, a much greater responsibility to consider her feelings and wishes. Today, though, it may be time. I’ve just read a “tweet” from a colleague advising me that tomorrow, May 1st, is Blogging Against Disablism Day, or BADD. badd02.gif is a link to the symbol for the day, and http://bit.ly/j48odZ is a link to the blog that is hosting the event.
Since about the age of two, my daughter has struggled under a variety of disabilities—none terribly severe, in and of themselves, but in accumulation, seriously limiting. I have come to believe, gradually, that the most disabling aspect of these various learning, behavioral, and emotional struggles has been the fact that she accepts them as a “disability.”