DSM-5 May See Major Changes to Autism, Learning Disorders

A single diagnostic entity— autism spectrum disorder—is being proposed for inclusion in DSM-5 as a replacement for the three autism diagnoses listed in DSM-IV.

That proposed change—eliminating the diagnoses of autism, Asperger’s disorder, and pervasive developmental disorder–not otherwise specified—(PDD-NOS) is the most dramatic, and possibly controversial, in store for the chapter on neurodevelopmental disorders in the revised manual to be published in 2013. Other major changes include the addition of several language-related disorders and a category to be called “specific learning disorder” with seven “descriptive feature specifiers” that would be used by clinicians in the diagnosis of patients with learning disorders in specific areas (see New Learning Disorder Diagnosis Proposed at http://psychnews.psychiatryonline.org/newsArticle.aspx?articleid=481202).

Also proposed are changes to the criteria for intellectual development disorder, known in DSM-IV as mental retardation.

Susan Swedo, M.D., chair of the DSM-5 Neurodevelopmental Disorders (ND) Work Group, told Psychiatric News that much recent research has indicated a lack of concordance across clinical centers treating autism in how the three diagnoses in DSM-IV have been used and how the criteria have been applied.

For instance, a recent large multisite study in the Archives of General Psychiatry (November 2011) found significant site differences in “best-estimate clinical diagnoses” of specific autism spectrum disorders (ASD). Moreover, relationships between clinical diagnoses and standardized scores, particularly verbal IQ, language level, and core diagnostic features, varied across sites in weighting of information and threshold cutoffs (see Extensive Variations Found in Making Autism Diagnoses at http://psychnews.psychiatryonline.org/newsArticle.aspx?articleid=481203).

“The DSM-5 ND work group spent a great deal of time evaluating the reliability and validity of the separate ASD diagnoses and concluded that there was no evidence to support continued separation of the diagnoses,” Swedo told Psychiatric News. “That is why we’ll be recommending that DSM-5 utilize a single diagnosis—autism spectrum disorder.”

Swedo said the subsuming of Asperger’s within the broad category of ASD has been the biggest area of attention for public and professional comment.

Family and patient responses to the subsuming of Asperger’s into ASD were not tepid and included those who strongly protest the change as well as those who hail it.

Swedo said a small but vocal group of adult patients identify themselves as having Asperger’s and seek to have the condition recognized for its impairments, but also for its strengths. These adults, some of whom refer to themselves as “Aspies,” find representation in Web sites such as Aspie.com and registered vehement opposition to being “lumped in” with individuals with autism, she said.

But Swedo responds that the definition by which many of these adults identify themselves did not meet the criteria for Asperger’s as indicated in DSM-IV anyway. “Our response is that they may continue to self-identify according to their own definition,” she said.

She added that another group composed of parents of children who meet the DSM-IV criteria for Asperger’s expressed concern that the change would mean their children’s unique needs would go unrecognized.

But Swedo told Psychiatric News that the same child diagnosed with Asperger’s in one clinic would as likely be diagnosed with autism in another. “The improvement we are proposing for DSM-5 is to have specifiers in place that allow us to identify for other clinicians the differences presented by individual patients.”

Finally, Swedo said a fairly large group that registered loud applause for the change is composed of parents and family members residing in states—such as California—where services are reimbursed for autism but not for Asperger’s or PDD-NOS.

“I was grateful that we had data to back up this proposed change,” Swedo said. “It was a thoughtful exchange. We had started out trying to develop criteria that would better separate out these groups, but the data indicate that there is no discernible difference.

“I suspect our recommended changes have struck the right balance between ‘lumping and splitting’,” she said. “We get an equal number of clinicians concerned that the new ASD category is too broad and those who think it is too narrow. It’s a reminder that DSM is a manual of behavioral disorders that are diagnosed by observation, and those observations will always be influenced by a clinician’s training and previous experience.”