Asperger’s diagnosis disappears, will treatment disappear too?

Asperger syndrome has been reclassified as an autism spectrum disorder (ASD)in the new Diagnostic and Statistical Manual of Mental Disorders, Fifth edition (DSM-5) and, as a result, this familiar name will disappear from the diagnostic lexicon. There is some concern that children diagnosed with Asperger’s will lose services under the new nomenclature. We spoke with two experts about how this change will affect diagnoses.

Clinicians might have to re-evaluate patients under the new diagnostic criteria, said Walter E. Kaufmann, M.D., Senior Associate in Neurology at Boston Children's Hospital, and Visiting Professor of Neurology at Harvard Medical School. “It would be up to the clinician to decide whether there is a need to evaluate,” said Kaufmann, a member of the APA neurodevelopmental disorders work group which created the new diagnostic criteria for ASD. “We think most patients with Asperger’s will meet ASD criteria, but some will not.”

Kaufmann said the work group looked at research comparing Asperger’s and high functioning autism, and found no evidence for distinguishing between them. He said that there was a structural problem with DSM-IV to begin with in terms of Asperger’s. “There was a threshold problem,” he said.

DSM-IV to DSM-5

Under DSM-IV, there were five separate autism-related disorders: autistic disorder, Asperger’s disorder, childhood disintegrative disorder, Rett syndrome, and the catch-all “pervasive developmental disorder not otherwise specified” (PDD NOS). According to the APA, there was no consistency in how these diagnoses were applied. Instead, programs and clinicians used them to represent symptoms and behaviors along a severity continuum. So, the APA’s Neurodevelopmental Disorder Work Group revised the autism diagnoses.

In DSM-5, three categories of symptoms from the DSM-IV are combined into two: social communication and interaction issues; and restricted repetitive patterns of behavior, interests, or activities (see Figure 1).

Labels

Alycia Halladay, Ph.D., senior director for environmental and clinical sciences for Autism Speaks, said that there is some concern that the “label” of Asperger’s would no longer be used. But Asperger’s was already an autism spectrum disorder (ASD), so having a diagnosis of ASD is not that big a change, she said. “But I know the community is concerned,” she said. “Some people with Asperger’s want to maintain that label, they want to have a separate identity from autism.” Some of these people feel that the autism label may encourage discrimination, and even think that people with Asperger’s are perceived to have a higher IQ.

Under the new criteria, people with Asperger’s or PDD NOS under DSM-IV should have no change in their services, said Halladay. “What they qualified for before they should continue to qualify for under DSM-5,” she said.

But there have been some studies that indicate people with Asperger’s or PDD-NOS would not receive an autism diagnosis. Media reports about these studies have left the community feeling “uncertain and worried,” she said, adding that more recent studies show that people would be eligible for the same services. The APA work group in charge of the change “has been very vocal about not wanting people who have Asperger’s or PDD-NOS to lose their services,” Halladay added.

Lack of consistency

The intention of the change was to refine the diagnostic criteria, not eliminate people from being diagnosed. Under DSM-IV, one clinician might diagnose a patient as having Asperger’s while another might say the same patient had PDD-NOS. Thus, clinicians who were well-trained and well-intentioned were not using consistent criteria. They wanted to denote severity, but under DSM-IV there was no way to do this. Under DSM-5, there will be.

Kaufmann noted that no issues related to eligibility for school services, or treatment, or what insurance companies would reimburse, were taken into consideration for the revisions. “What we were trying to provide was the most significantly valid diagnostic criteria,” he explained. “Of course, any time you define an entity, you think it will be treated,” he said. “Treatment is implicit; otherwise it doesn’t make sense to have the diagnosis.”

After the revisions were developed, the APA conducted field trials to test the reliability of the diagnostic criteria, said Kaufmann. “Based on that and on general practice, the impression is that most patients who had the label of Asperger’s in the past will fall under autism spectrum disorders,” he said.

Figure 1: DSM-5 categories for Autism Spectrum Disorders (ASD)

Source: American Psychiatric Association