An upcoming revision of the Diagnostic and Statistical Manual of Mental Disorders (D.S.M.), the standard reference work used in research, treatment, and insurance decisions for mental health patients, is expected to change the way autism and related disorders are diagnosed. It’s an important change given that tens of thousands of people rely on such diagnoses for access to financial, health, and educational assistance; the revisions are expected to significantly narrow the definition of autism. Not only will it become more difficult for new people to get access to such assistance in the future, but many of those who rely on it now will lose access if they do not meet the new criteria. It’s also an important change for the many people for whom over-diagnosis and misdiagnosis have resulted in the loss of countless personal and professional opportunities.
Autism rates have skyrocketed in recent decades. In 1993, just 1 in 10,000 children was diagnosed with autism. Today that number is closer to 1 in 100, leading some autism research advocacy groups to call the disorder “the fastest-growing developmental disability in the United States.”
The increased numbers are at least partially the result of changes in the definition of the condition and in the way it is diagnosed. Definitions have broadened in recent years in order to give more people access to taxpayer funded intervention programs. The new D.S.M. revisions will address those changes — and while it’s not known yet how much the new guidelines will narrow the definition of autism, some believe the new D.S.M. will effectively end the surge in diagnoses.
At least a million people have already been diagnosed with autism and its related disorders, Asperger syndrome and “pervasive developmental disorder, not otherwise specified” (P.D.D.-N.O.S.). The revised D.S.M. would consolidate all three diagnoses under the heading “autism spectrum disorder,” and would significantly narrow the criteria for diagnosis. The American Psychiatric Association, the group tasked with drafting the changes to the D.S.M., explained in a January 2012 statement:
The proposal by the DSM-5 Neurodevelopmental Work Group recommends a new category called autism spectrum disorder which would incorporate several previously separate diagnoses, including autistic disorder, Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified.
The proposal asserts that symptoms of these four disorders represent a continuum from mild to severe, rather than a simple yes or no diagnosis to a specific disorder. The proposed diagnostic criteria for autism spectrum disorder specify a range of severity as well as describe the individual’s overall developmental status-in social communication and other relevant cognitive and motor behaviors.
“From a clinical standpoint, I feel as though the proposed change better matches the spectrum of symptoms that we see,” said Dr. Annie Spell, a Lafayette clinical child psychologist and Autism Society of Acadiana board member. “In terms of the effects of the change — the political and societal effects of the change — I can’t yet say.”
Not everyone is pleased with the proposed changes, however. “Our fear is that we are going to take a big step backward,” said Asperger Syndrome Education Network president Lori Shery. “If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure.” Mark Roithmayr, president of the advocacy group Autism Speaks, emphasized the need for caution: “We need to carefully monitor the impact of these diagnostic changes on access to services and ensure that no one is being denied the services they need. Some treatments and services are driven solely by a person’s diagnosis, while other services may depend on other criteria such as age, I.Q. level or medical history.” “Narrowing the definition of autism is a bad idea,” wrote pediatric neurologist Martha Herbert in a January letter to the New York Times. “As we learn that autism is not just from genes and brain but also from a child’s response to a challenging environment, why make that environment even more challenging?” “Changing the criteria to decrease the percentage seems dishonest and unethical”, added social workers Heather Knickerbocker and Kathy Waehler in a similar letter.
It’s true that early intervention efforts are vital in helping the truly autistic child learn and thrive, but it’s also true that over-diagnosis has reached epidemic levels. Asperger syndrome, considered to be at the high-functioning end of the autism spectrum, has a particularly serious history of over-diagnosis. In 1992, a Department of Education directive exacerbated the problem when it called for enhanced services for those on the autism spectrum. Diagnoses of Asperger syndrome went through the roof, except in California, where enhanced services were not offered.
High-functioning Asperger sufferers are not always easy to distinguish from those with social disabilities, which are much less serious and ought to be treated differently from those who are really on the autism spectrum. Worse, some children are stuck with the Asperger label when in reality they are merely different from their peers. Benjamin Nugent, the director of creative writing at Southern New Hampshire University, wrote in the New York Times recently that, although he was diagnosed with Asperger as a young man, and even appeared in an educational film produced by two Asperger specialists, he outgrew the symptoms:
The thing is, after college I moved to New York City and became a writer and met some people who shared my obsessions . . . 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. . . . Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome.
The definition should be narrowed. I don’t want a kid with mild autism to go untreated. But I don’t want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn’t true.
While some people do benefit from the extra help that is available to autism patients, those who are misdiagnosed are done a serious disservice. Children with Asperger, or with social disorders that may resemble Asperger, are far too often grouped with truly autistic students in schools, even though they do not have the serious language reception and expression difficulties that autistic children have. They don’t do well in such environments. Many of these children go on to miss out of job opportunities later in life because of a perceived disability that can make it harder for them to grow and compensate in the most effective way possible. Eventually, biological markers will help doctors differentiate between those with autism-related disorders from those with social disabilities — but for now, the over-diagnosis that has been so prevalent may well do more harm than good.
It’s not easy to know just what effect the new guidelines will have on the long-term treatment of autism spectrum patients, in part because the changes make it difficult for researchers whose work relies on tracking trends over time. “I am sure this was not done without a lot of forethought, but I’m not so sure they thought about the fallout,” said Jennifer Pinto-Martin, director of the Center for Autism and Developmental Disabilities at the University of Pennsylvania.
Used with the permission of Eagle Forum.