In the United States, April was National Autism Awareness month. Whether or not media coverage of autism increased over the past few weeks, there was already a great deal of coverage. Unfortunately, much of that coverage has been focused more on raising awareness than advancing understanding. A recent interview on National Public Radio (NPR) illustrates some of the recurring weaknesses of many of these articles, radio segments, and television features.
On March 27, Scott Simon, host of Weekend Edition, spoke with Shonda and Curt Schilling (yes the famous former pitcher for the Red Sox). Mrs. Schilling had just published a book (The Best Kind of Different: One Family's Journey with Asperger's Syndrome) that describes their family life with a child who has been diagnosed with the condition named in the book title. As best as I could glean from their comments in the interview, the affected son appears to be approximately ten to twelve years old. Thus, the perspective of the Schillings is based on a fairly short journey and a somewhat limited range of experiences at this point. It is also fair to note that the Schillings will likely have substantially greater financial resources to pursue whatever treatments their son needs than would be the case for the vast majority of the parents striving to help their children with developmental disabilities. This last point is not meant as a criticism, but limits on the financial resources available to pay for autism-related treatments and programs can seriously constrain the options for many parents of children with autism-related disabilities. So, there is reason to expect that the Schilling's experiences may not be fully representative of, or as stressful as, those of many other families.
The interview covered some of the specific manifestations associated with Asperger's Syndrome, and the descriptions were fine as far as they went. However, the interview failed to provide any broader perspective on the range of truly major challenges that confront many (although not all) children with autism (including those with Asperger's Syndrome) and their parents, especially as the children mature into adolescents and young adults. The seriousness of these issues was utterly trivialized by a discussion, near the end of the interview, focused on the tendency for the Schilling's son to matter-of-factly announce to all within earshot certain indiscretions, of parental origin or otherwise, that are a part of normal human gastrointestinal physiology. The host and his guests had a good laugh. Unfortunately, the shared mirth generated an impression that with a specific diagnosis in hand the remaining hurdles are as easily dealt with as are the socially "unfiltered" comments that are associated with individuals affected by Asperger's Syndrome and other variants of autism.
Near the end of the discussion, Scott Simon helpfully explained how an amazing number of extremely successful and important people (Einstein, Ben Franklin, Napoleon, Lincoln, Harry Truman) "might've all had Asperger's Syndrome." I would love to know who at NPR checked out the sources for these "facts." Although I admit that my knowledge about each of these individuals is not as deep as that of their respective biographers, I have learned a fair amount about all of them, and I find the claim somewhat difficult to believe. Ben Franklin, the man who created numerous fraternal organizations in Philadelphia and charmed the sophisticated upper class ladies of eighteenth century Paris, seems especially unlikely to have been "afflicted" by Asperger's Syndrome.
I am not arguing that a correct diagnosis of autism or related developmental conditions is necessarily incompatible with substantial, even spectacular success, in the wider world. My point is that a certain autism cachet has become so formidable that the New York Times Magazine (issue of December 6, 2009) published an article by one of their regular contributors, a physician, a major point of which was to speculate that Sherlock Holmes (i.e, a fictional character) had Asperger's Syndrome. What should not be lost sight of is that the accomplishments of people like Temple Grandin, who has had a successful career relating to animal science and who surely has a form of autism, or Tim Page, who was diagnosed with Asperger's Syndrome in his forties and won a Pulitzer Prize for music criticism, are not necessarily typical for those with clinically-diagnosed autism.
There is a tendency for groups that serve or advocate on behalf of those with disabilities to focus on individual success stories, even if rare, to fend off the prejudice and even hostility that sometimes arise in the general public and are directed towards those with various diagnostic labels. I saw this first hand with elements of the learning disabilities (LD) community that, at least in some instances, were reluctant to acknowledge that some kids with LD are below average in standard measures of intelligence. The upshot was that the most vulnerable members of this population actually had even fewer options than the individuals who could be presented to the broader public as pretty much "regular" kids, with their "learning differences" minimized.
A human interest story about an individual's struggles with a disability that is tied up in a pretty metaphorical bow at the end of the piece will undoubtedly attract more reader/listener/viewer attention than a more demanding discursive, analytical discussion, especially if the conclusions are not upbeat. Perhaps, it would be counterproductive to completely eliminate the uplifting narratives focused on one individual at a time, but if understanding, not just awareness, of autism is to be advanced, a bit more of the sort of journalism focused on conveying information and not just eliciting emotion will be needed.