Aspergers:A Powerful Identity, a Vanishing Diagnosis

By CLAUDIA WALLIS
Published: November 2, 2009

It is one of the most intriguing labels in psychiatry. Children with Asperger’s syndrome, a mild form of autism, are socially awkward and often physically clumsy, but many are verbal prodigies, speaking in complex sentences at early ages, reading newspapers fluently by age 5 or 6 and acquiring expertise in some preferred topic — stegosaurs, clipper ships, Interstate highways — that will astonish adults and bore their playmates to tears.

In recent years, this once obscure diagnosis, given to more than four times as many boys as girls, has become increasingly common.

Much of the growing prevalence of autism, which now affects about 1 percent of American children, according to federal data, can be attributed to Asperger’s and other mild forms of the disorder. And Asperger’s has exploded into popular culture through books and films depicting it as the realm of brilliant nerds and savantlike geniuses.

But no sooner has Asperger consciousness awakened than the disorder seems headed for psychiatric obsolescence. Though it became an official part of the medical lexicon only in 1994, the experts who are revising psychiatry’s diagnostic manual have proposed to eliminate it from the new edition, due out in 2012.

If these experts have their way, Asperger’s syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder — a category that encompasses autism’s entire range, or spectrum, from high-functioning to profoundly disabling.

“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,” said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual.

“Asperger’s means a lot of different things to different people,” Dr. Lord said. “It’s confusing and not terribly useful.”

Taking Asperger’s out of the manual, known as D.S.M.-V for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, does not mean the term will disappear. “We don’t want to say that no one can ever use this word,” Dr. Lord said, adding: “It’s not an evidence-based term. It may be something people would like to use to describe how they see themselves fitting into the spectrum.”

But the change, if approved by the manual’s editors and consultants, is likely to be controversial. The Asperger’s diagnosis is used by health insurers, researchers, state agencies and schools — not to mention people with the disorder, many of whom proudly call themselves Aspies.

Some experts worry that the loss of the label will inhibit mildly affected people from being assessed for autism. “The general public has either a neutral or fairly positive view of the term Asperger’s syndrome,” said Tony Attwood, a psychologist based in Australia who wrote “The Complete Guide to Asperger’s Syndrome” (Jessica Kingsley Publishers, 2006). But if people are told they should be evaluated for autism, he went on, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’ So we will miss the opportunity to assess people.”

The proposed changes to the autism category are part of a bigger overhaul that will largely replace the old “you have it or you don’t” model of mental illness with a more modern view — that psychiatric disorders should be seen as a continuum, with many degrees of severity. The goal is to develop “severity measures within each diagnosis,” said Dr. Darrel A. Regier, research director at the American Psychiatric Association and vice chairman of the diagnostic manual’s task force.

Another broad change is to better recognize that psychiatric patients often have many health problems affecting mind and body and that clinicians need to evaluate and treat the whole patient.

Historically, Dr. Regier said, the diagnostic manual was used to sort hospital patients based on what was judged to be their most serious problem. A patient with a primary diagnosis of major depression would not be evaluated for anxiety, for example, even though the two disorders often go hand in hand.

Similarly, a child with the autism label could not also have a diagnosis of attention deficit hyperactivity disorder, because attention problems are considered secondary to the autism. Thus, they might go untreated, or the treatment would not be covered by insurance.

The new edition, by contrast, will list not only the core issues that characterize a given diagnosis but also an array of other health problems that commonly accompany the disorder. For autism, this would most likely include anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise.

Parents and advocates have been clamoring for an approach that addresses the multiple health problems that plague many children with autism. “Our kids will do much better if medical conditions like gut issues or allergies are treated,” said Lee Grossman, president of the Autism Society of America, a leading advocacy group.

The new diagnostic approach addresses another source of confusion: the current labels may change over time. “A child can look like they have P.D.D.-N.O.S., then Asperger’s, then back to autism,” Dr. Lord said. The inconsistent use of these labels has been a problem for researchers recruiting subjects for studies of autism spectrum disorder.

And it can be a problem for people seeking help. In some states, California and Texas, for example, people with traditional autistic disorder qualify for state services, while those with Asperger’s and pervasive developmental disorder do not.

A big challenge for the diagnostic manual team working on autism is how to measure severity in a condition that often causes a very uneven profile of abilities and disabilities. Mr. Grossman gives the example of a woman who serves on an advisory panel to his organization. She is nonverbal and depends on an electronic device to communicate, is prone to self-injury and relies on a personal aide. And yet “she’s absolutely brilliant, she runs a newsletter, and she’s up on all the science,” he said, adding, “Where would somebody like that come out on the rating scale?”

Recent books by people with Asperger’s give insights into the workings of some oddly beautiful minds. In “Embracing the Wide Sky” (Free Press, 2009), Daniel Tammet, a shy British math and linguistic savant, tells how he was able to learn enough Icelandic in a week to manage a television interview and how he could recite the value of pi to 22,514 decimal places by envisioning the digits “as a rolling numerical panorama” of colors, shapes and textures.

In “Look Me in the Eye” (Crown, 2007), John Elder Robison describes a painfully lonely childhood and an ability to look at a circuit design and imagine how it will transform sound — a talent he used to invent audio effects and exploding guitars for the rock band Kiss.

Not all people with Asperger’s have such extraordinary abilities, and some who do are so crippled by anxiety and social limitations that they cannot hold down a job or live on their own.

Dr. Susan E. Swedo, a senior investigator at the National Institute of Mental Health who heads the diagnostic manual group working on autism, acknowledges the difficulty of describing such a variable disorder. Dr. Swedo said the plan was to define autism by two core elements — impaired social communication and repetitive behaviors or fixated interests — and to score each of those elements for severity.

The trick is to “walk the tightrope of truth,” Dr. Swedo said, between providing clear, easily used diagnostic guidance to clinicians and capturing the individual variation that is relevant to treatment. “People say that in autism, everybody is a snowflake,” she said. “It’s the perfect analogy.”

The proposed elimination of autism subtypes comes at the very moment when research suggests that the disorder may have scores of varieties. Investigators have already identified more than a dozen gene patterns associated with autism, but Dr. Lord, of Michigan, said the genetic markers “don’t seem to map at all into what people currently call Asperger’s or P.D.D.”

Nor have many of these genes been linked to distinct sets of symptoms. Until research can identify reliable biological markers for autism subtypes, Dr. Lord and other experts say, it is better to have no subtypes than the wrong ones.

n interviews, people with Asperger’s and mild autism were divided on the prospect of losing the label. Temple Grandin, a Colorado State University animal scientist who is perhaps the best-known autistic American, said Asperger’s was too well established to be thrown overboard. “The Asperger community is a big vocal community,” Dr. Grandin said, “a reason in itself” to leave the diagnosis in place.

“P.D.D.-N.O.S., I’d throw in the garbage can,” she added. “But I’d keep Asperger’s.”

But some younger people involved in the growing autism self-advocacy movement see things differently.

“My identity is attached to being on the autism spectrum, not some superior Asperger’s identity,” said Ari Ne’eman, 21, an activist who founded the Autistic Self-Advocacy Network, a 15-chapter organization he has built while in college, adding, “I think the consolidation to one category of autism spectrum diagnosis will lead to better services.”

All interested parties will have an opportunity to weigh in on the proposed changes. The American Psychiatric Association is expected to post the working group’s final proposal on autism diagnostic criteria on the diagnostic manual’s Web site in January and invite comment from the public. Dr. Swedo and company are bracing for an earful.

The Asperger's diagnosis

An article in today's New York Times - A Powerful Identity, a Vanishing Diagnosis - reports that the "Asperger's Syndrome" diagnosis may be eliminated from the 2012 diagnostic manual (D.S.M.-V). In its place, would be a single broad diagnosis of "autism spectrum disorder."

According to the article, the American Psychiatric Association is expected to post the working group's final proposal on the diagnostic manual's web site in January and invite comment from the public. That will be a fascinating comment thread to follow. I have not yet met an individual with Asperger's Syndrome who was reluctant to express his or her strongly felt views on a topic.

I first heard the word "Asperger's" from a speech and language teacher when our son was in first grade, in the fall of 1996. She had only recently learned about the Syndrome and thought it might fit - I ran a computer search that night, and she was right. The label didn't lead us to a miracle cure - and we weren't looking for one. It did help connect us with a virtual community of parents of kids with Aspergers and adults with Aspergers so we could start learning what others were doing to help support and compensate for the confusing range of qualities and behaviors that often appear as part of Asperger's Syndrome.

Interestingly, we first suspected that our son might have autism much earlier, and our pediatrician (who thought we were being neurotic first time parents) referred us to a respected developmental psychologist when our son was three. The psychologist tested our son and reported that he could not be autistic because he was "not retarded." Thankfully, the understanding of autism spectrum disorders has advanced significantly since then.

Soon after we discovered the Asperger's Syndrome label a child psychologist explained that, in her view, Asperger's Syndrome describes a cluster of seemingly unrelated skills and deficits that come together for some individuals on the autism spectrum - and, make no mistake, wherever you happen to fit on the autism spectrum, "life is going to be hard." It sounds like the D.S.M-V may be headed in this direction.

Our son attended a high school for kids with high functioning autism, Asperger's Syndrome and non-verbal learning disabilities. There were about 50 students and it was a good laboratory within which to test the saying that - "If you have seen one person with Asperger's . . . you have seen one person with Asperger's." These kids were all unique, and they all identified in different ways. But the truth is, almost all of them faced significant challenges that will make life hard - the two hallmarks were social awkwardness and great difficulties with organization (what psychologists refer to as executory planning). The great joy of the school, was that many of the students also presented unique and fascinating strengths and refreshing honesty.

I am watching these former high school students enter young adulthood now. And, much as I wish it was not true, I think life on the spectrum is hard. But hard does not mean bad - just hard. One of my co-workers shared a story the other day about an accomplishment. She hiked to the bottom of the Grand Canyon in early September. The next morning, as she stood in 97 degree heat in the shade she looked 7,000 feet up at the rim and saw two tiny trees at the top. And she wondered whether she could ever make it to the top. Of course, she did, one step at a time. That image works for me. It is a hard climb, but a beautiful climb, and we are taking it one day at a time.

I am going to be very interested to read and hear what the Asperger's and autism communities have to say about the proposed diagnostic changes. I've always thought that the label doesn't matter - what does matter is understanding the full range of support that might help each individual capitalize on his or her strengths and address his or her challenges. However, I think I may have been wrong. We do, after all, live in a "neurotypical" world and labels, as it turns out, can matter a lot in dealing with the social services maze.