The numbers are striking: about 1% of 8-year-old children will receive a diagnosis of an autism spectrum disorder. We still have much to learn about autism, and many factors make study difficult. Reliable older data are scarce, and the diagnostic criteria change—for instance, the currently distinct diagnosis of Asperger syndrome will soon be redefined.
To many, the image of autism is of a cute sandy-haired boy, perhaps staring thoughtfully into space, perhaps reciting the batting averages of individual New York Yankees over the past 10 years—a kid stuck behind a wax-paper wall that blocks the full development of emotional connectivity and complex communication.
The autism spectrum is wide. Those diagnosed carry various features of social impairment, such as a limited ability to recognize and respond to social cues, language and communication challenges, and tendencies to get stuck on the literal. Some show severe social withdrawal and heightened sensitivity to sensory stimuli. Others perseverate on concepts, numbers, ritual behaviors, and repetitive movements.
Special schools and programs can offer a haven. They can buffer children from the unkindness of other children and from the unrealistic expectations of well-meaning but unaware adults; they can protect the more severely affected from self-destructive behaviors, and perhaps they can even decrease some distracting behaviors while promoting communication skills and reducing anxiety. But schools can’t provide forever-care.
Eight-year-olds have a way of growing into adults; nearly half a million autistic children will enter adulthood over the next 10 years. Many will need lifelong comprehensive care and support, others can function well in the workplace but are challenged in social interactions. Perhaps 25% of children diagnosed with an autism spectrum disorder will be high-functioning—with traits displayed graphically (but a little over-the-top) by Dustin Hoffman in the film Rain Man and by Christian Clemenson as the hopping, popping, brilliant attorney Jerry Espenson in the television series Boston Legal. But these are caricatures, and although they heighten our awareness they are limited in perspective.
The patients we see with Asperger syndrome or high-functioning autism do not always wear their diagnosis on their sleeve. Our office staff may recognize them as being a bit quirky. Most first come to our attention for common, unrelated diseases such as diabetes, abdominal pain, and cancer, needing extensive patient education as part of their disease management, but with whom we struggle to make our message clear. Our skills in recognizing these patients need to be refined in order to understand and respond to their unique needs.
At times, we are all challenged in communicating with some patients, even those not perceiving the emotional world through that wall of wax paper. In this issue of the Journal, Prayson and Franco and Shane offer practical advice in interacting with patients with Asperger syndrome. We need to pay attention. In fact, we would do well to follow many of their suggestions with all of our patients.