Asperger's History of Over-diagnosis
by Paul Steinberg
Asperger syndrome and Aspies — the affectionate name that people diagnosed with Asperger syndrome call themselves — seem to be everywhere.
Considered to be at the high-functioning end of the autism spectrum, Asperger syndrome has become more loosely defined in the past 20 years, by both the mental health profession and by lay people, and in many instances is now synonymous with social and interpersonal disabilities. But people with social disabilities are not necessarily autistic, and giving them diagnoses on the autism spectrum often does a real disservice. An expert task force appointed by the American Psychiatric Association is now looking into the possibility of changing the way we diagnose Asperger. True autism reflects major problems with receptive language (the ability to comprehend sounds and words) and with expressive language. Pitch and tone of voice in autism are off-kilter. Language delays are common, and syntactic development is compromised; in addition, there can be repetitive motor movements.
Eventually, biological markers, now in the beginning stages of development, will help in separating autism-spectrum disorders from social disabilities. For example, researchers at the University of Pittsburgh Medical Center have recently developed three-dimensional brain scans that look at brain wiring. In preliminary studies people with autism-spectrum disorders appear to have too much wiring and disorganized wiring in areas involved with language acquisition.
Nevertheless, children and adults with significant interpersonal deficits are being lumped together with children and adults with language acquisition problems. Currently, with the loosening of the diagnosis of Asperger, children and adults who are shy and timid, who have quirky interests like train schedules and baseball statistics, and who have trouble relating to their peers — but who have no language-acquisition problems — are placed on the autism spectrum.
In recent years speculation has abounded that Albert Einstein must have had Asperger syndrome. Christopher Hitchens speculated that his intellectual hero George Orwell must have had Asperger. Indeed, Orwell had major problems fitting in at British preparatory schools — not surprisingly, he hated the totalitarian tenor of teachers and school administrators — but someone on the autism spectrum could probably never have become a police officer in Lower Burma, as Orwell did. Similarly, writers like Charles Morris have noted that Warren Buffett is thought to have a condition on the autism spectrum, presumably Asperger syndrome.
A 1992 United States Department of Education directive contributed to the over-diagnosis of Asperger syndrome. It called for enhanced services for children diagnosed as being on the autism spectrum and for children with “pervasive developmental disorder — not otherwise specified (P.D.D.-N.O.S.),” a diagnosis in which children with social disabilities could be lumped. The diagnosis of Asperger syndrome went through the roof. Curiously, in California, where children with P.D.D.-N.O.S. were not given enhanced services, autism-spectrum diagnoses did not increase. Too little science and too many unintended consequences.
The downside to this diagnosis lies in evidence that children with social disabilities, diagnosed now with an autism-spectrum disorder like Asperger, have lower self-esteem and poorer social development when inappropriately placed in school environments with truly autistic children. In addition, many of us clinicians have seen young adults denied job opportunities, for example in the Peace Corps, when inappropriately given a diagnosis of Asperger syndrome instead of a social disability. George Orwell might never have been able to write his brilliant essay about the shooting of an elephant if Asperger syndrome had been part of his permanent medical record.
Given that humans are social animals, interpersonal intelligence is perhaps the most important natural human skill — as valuable as or more valuable than verbal-linguistic intelligence and logical-mathematical intelligence (to use the terminology of the Harvard psychologist Howard Gardner), the skills focused on in school. Social disabilities are not at all trivial, but they become cheapened by the ubiquity of the Asperger diagnosis, and they become miscast when put in the autism spectrum.
In his 2009 book “Parallel Play,” Tim Page, a former music critic for The Washington Post, describes his relief in being given an Asperger syndrome diagnosis as an adult and thus having an explanation for his longstanding social difficulties. But the rubric of a “social disability” would be more accurate than “autism spectrum” for people like Mr. Page, and potentially just as relieving. In addition, adults and children who have normal expressive and receptive language skills can benefit more fully from social-skills programs than adults and children with true autism. In fact, Tim Page learned a large measure of his social skills from an Emily Post course, just as Warren Buffett credits a Dale Carnegie program with changing his life.
For Mr. Buffett and Mr. Page, these social skills do not come naturally and automatically. But these men are able to compensate more completely than a truly autistic child or adult whose language deficiencies and cognitive deficits can often put him at a level of functioning in the mentally retarded range.
Many people, now inappropriately labeled as Aspies, make the world a richer, more interesting place. Their quirky absorptions in, say, physics, baseball stats or investment strategies add enormously to human advancement. Unlike adults with a Peter Pan syndrome who never move beyond adolescence, children and young adults with significant social disabilities tend to grow quite effectively into their adult lives. Their seriousness and singularity of focus fit more compatibly with the interests of older adults rather than the interests of their childhood or young adult peers.
For better or worse, though, Asperger syndrome has become a part of our cultural landscape. Comments about a person’s having “a touch of Asperger’s” seem to be part of everyday conversations. Even an episode of “South Park” last year was devoted to Asperger syndrome. We can only hope that better physiological markers distinguishing between the autism-spectrum disorders and pure social disabilities can stem this tide of ever more pathologizing.
But, as Martha Denckla, a pediatric neurologist at Johns Hopkins University, has lamented, the only Americans in the future who will perhaps not be labeled as having a touch of Asperger syndrome will be politicians and lobbyists. Members of the political establishment may have other kinds of psychopathology; but, unlike the rest of us, they at least cannot be thought of as Aspies.