In recent months, the New York Times has gotten a lot of positive press in the autism community for Amy Harmon's series of sensitive articles regarding the many issues that impact those with autism and their families, including transitioning to adulthood, the DSM 5 revisions, and romantic relationships. But two recently published pieces are causing a great deal of anger in the very same community. The thrust of these two op-eds: Asperger's is over-diagnosed.
"Asperger's History of Over-Diagnosis," by psychiatrist Paul Steinberg, provides a clinical view, while the narrative "I Had Asperger Syndrome. Briefly." by Benjamin Nugent, provides a first person account of being diagnosed with Asperger's in the 90's.
In his piece, Dr. Steinberg equates "true" autism to "a Peter Pan syndrome" and alleges that those with true autism "never move beyond adolescence." Asperger's, he explains, isn't true autism. He writes, "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."
He states that adults currently diagnosed with Asperger's, like Tim Page, author of the memoir "Parallel Play" "...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."
Mr. Nugent, in counterpoint, presents his story of being misdiagnosed. "Both my mother and her colleague believed I met the diagnostic criteria laid out in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. The manual, still the authoritative text for American therapists, hospitals and insurers, listed the symptoms exhibited by people with Asperger disorder, and, when I was 17, I was judged to fit the bill."
However, he goes on to explain, "...after college I moved to New York City and became a writer and met some people who shared my obsessions, and I ditched the Forsterian narrator thing, and then I wasn't that awkward or isolated anymore. According to the diagnostic manual, Asperger syndrome is ‘a continuous and lifelong disorder,' but my symptoms had vanished."
Stating that he doubts his experience is unique, Mr. Nugent writes that, "Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome." Therefore, in his opinion, the diagnostic criteria should be narrowed.
Many people with Asperger's and their family members disagree, noting the sweeping generalizations and mischaracterizations in the articles. First of all, was one of the subjects cited by Dr. Steinberg, Tim Page. About Mr. Page, the good doctor wrote:
"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." He then goes on to imply that Mr. Page's "social disability" was ameliorated largely by reading "Emily Post."
Not surprisingly, Mr. Page took exception to this, writing:
"Paul Steinberg ('Asperger's History of Over-Diagnosis,' Op-Ed, The New York Times on the Web, Feb. 1) simplifies my own experience with the condition, as described in my memoir, ‘Parallel Play.'
‘Social disability' does not begin to sum up my lifelong history of insomnia, anxiety, depression, cluelessness and isolation, little of which was assuaged by Emily Post. Nor, in all modesty, does it address the singleminded, fiercely exclusive energy I can bring to a project that has captured my attention, the immersion in an otherworldly ecstasy that music, writing and film provide, and the very occasional but no less profound joy in my own strangeness."
Regarding Dr. Steinberg's implication that "true" autism almost always means mental retardation, blogger Joslyn Gray highlights recent research in the area of intelligence in autism:
"According to the Centers for Disease Control, anywhere between about 30 percent and 50% of autistic children are cognitively impaired. However, a lot depends on what kind of IQ test is used. The standard IQ test is the Weschler Intelligence Scale, which is language-dependent. An alternate test is Raven's Progressive Matrices, which is more visual, and is not timed. Although neurotypical (non-autistic) people tend to score about the same on both tests, autistic people perform significantly better on the Raven test. In fact, one study of 51 autistic adults and children showed that autistic people score, on average, about 30 points higher on the Raven test, pulling all but a couple out of the cognitively impaired range (an IQ under 70). One individual swung from the cognitively impaired range to the 94th percentile."
As Sarah, an autistic blogger who blogs over at "Cat In A Dog's World," recently noted in response to another doctor's allegations that Asperger's is over-diagnosed:
"The problem with this contention is that to claim that something is over-diagnosed implies that there is one true, proper rate of diagnosis. And that ain't so. Even for many physical conditions, doctors wrangle over how to define the boundaries of a diagnosis. This is true for type II diabetes, for instance. At what point does a particular lab value cross the line of standard deviation and become abnormal? For a complex, multi-faceted neurological condition such as autism, these issues are compounded much, much more."
Landon Bryce, over at ThAutcast, takes aim at the stereotypes presented about whether a "truly autistic" person could be competent or successful, and how the mechanism of diagnosis through only externally visible behavior can be used to undermine the diagnoses and successes of those on the spectrum:
"One of the problems with defining autism only as a series of problematic behaviors, as neurotypical experts do, is that they can claim the autism has disappeared, or was never there, if the behaviors go away. The New York Times runs opinion pieces from two people today who take the position that autism can only be disabling, and any person who exhibits competence of any kind cannot truly be autistic."
Likewise, Mellody over at ASParenting called out the many areas of difficulty which were glossed over in Dr. Steinberg's article. For example, she drills into the claim that those diagnosed according to the current definition do not have issues with language:
"In the Steinburg piece, he talks about communication issues like they are only expressive and receptive speech. I wonder if he's aware that there are pragmatic and semantic language issues as well. Often, this is where we seem to lack. Even children who had no speech, but gained it and reproduce it ‘accurately' tend to have pragmatic and semantic language issues. This is not something that's an ‘Aspie only' trait."
As of this writing, these two pieces were the top two most e-mailed on the New York Times site, with a combined tweet count of more than 700 tweets, a fact I find particularly troubling. In my opinion, Dr. Steinberg's article represents a startling disconnection from the realities that I and many others on the spectrum have experienced. For us, Asperger's is far more than just a "social disability," although social disability can be included. Yes, there are some that have been misdiagnosed in the past. That is true of just about any condition. But, for every Benjamin Nugent, there are others who went through years of struggle and pain, yet remained overlooked.
People who claim that Asperger's is over-diagnosed should spend some time with some of those people. They would then understand the damage and prejudice that such short-sighted articles can create. However, one cannot help but question the beliefs and prejudices of someone who writes, that unlike the "Peter Pans" with "true" autism, "Many people, now inappropriately labeled as Aspies, make the world a richer, more interesting place."
Think about that for a minute....