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Asperger’s redefined: Manual revisions could impact treatment

by Matthew Ross Gelfand
May 23, 2013

Autism Aware

Beverly & Pack

The new diagnosis of Social (Pragmatic)
Communication Disorder in the latest mental health manual raises concerns about hindering treatment.     

A new diagnostic category to the latest version of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders could hinder care or insurance coverage for those with undiagnosed or moderate autism symptoms, critics contend.

The latest manual was released earlier in May.   

The primary point of contention lies with a new category called Social Pragmatic Communication Disorder. This “is meant to apply to individuals who have deficits in the social use of language but do not have the restricted interests or repetitive behavior you would see in autism spectrum disorders,” according to the Autism Speaks website.

The controversy stems out of a larger concern over how the manual categorizes Asperger’s Syndrome. Four years ago, APA announced that previously recognized subcategories of autism – including Asperger’s Syndrome and "pervasive development disorder not otherwise specified" (PPD-NOS) - would be omitted as separate categories from the DSM-V. Instead, they are now lumped into a broader, scale-based diagnosis called autism spectrum disorder.

“The loss of the term Asperger’s Syndrome is culturally and historically significant, but nothing more,” says Steve Silberman, contributing editor to WIRED magazine. “The good news about the DSM-V changes is that everybody with an existing Asperger’s or PDD-NOS diagnosis will be grandfathered into the new spectrum so long as they had a well-established diagnosis under DSM-IV criteria.”

This means nobody will “lose” his or her Asperger’s diagnosis under the new manual, according to Silberman. But new diagnoses may be harder to obtain.

For Wendy Sparrow, an online advocate of autism and a contributor to Chicken Soup for the Soul: Raising Kids on the Spectrum, the DSM-V revisions hit close to home.

She has a 12-year-old daughter with classic autism and a 10-year-old son with Asperger’s. She says her son does well enough academically but lacks peer-to-peer social skills, a combination that, if he hadn’t already been diagnosed, could have left him outside of the spectrum under the new definitions.

“With early intervention being so vital, having a child not quite qualify for the spectrum but actually need services is cruel,” Sparrow says. Her son doesn’t care for his Asperger’s diagnosis, but “labeling it as Asperger’s is almost entirely just for his benefit so that we can find ways to treat his issues and help him cope and so that he could get the benefit of belonging to the greater Asperger’s community. “

“What is of great concern is the children who previously would have been diagnosed with PDD-NOS – which was considered a ‘catch-basin’ for those who didn’t meet criteria for autism or Asperger’s – may now end up with the SPCD label,” says Silberman, who’s working on a book about autism that he plans to release next year.

“There are no services or established paths forward for this new diagnosis. No special education classes. No community of people and no cultural context. It’s unclear to me why it was taken out of the spectrum rather than made a sub-category,” he said. 

Some critics contend the latest manual was rushed into publication.

“I believe the APA didn’t want to hold off another year to allow for more scientific confirmation of their findings regarding SPCD,” says Dr. Steven Migalski, assistant professor in the Department of Clinical Psychology at the Chicago-based Adler School of Professional Psychiatry, and owner of Andersonville Behavioral Health. 

Migalski says only a single field trial was undertaken to validate SPCD from the time the DSM-V revison process began in 2010. Field trials are typically performed any time the validity of a new illness is being investigated. According to Migalski, there weren’t any replication trials for the SPCD diagnosis.

Perhaps most perplexing about the SPCD diagnosis is that the DSM-V lists one of its risk factors as a family history of autism spectrum disorder, Silberman says. 

“For the record, I’ve yet to hear anyone approve of the new changes,” Sparrow says. “Every doctor, therapist and educator I’ve spoken with said the proposed changes in regards to autism and Asperger’s would only impede children’s ability to get services before it was too late.” 

APA representatives were unavailable for comment. But Mary Roth, assistant director of the Autism Society of Indiana, explained that the changes aren’t all negative.

“The positive aspect of Asperger’s being placed into the autism spectrum is now, those people will have more services available to them that were previously autism-specific,” she said. “Furthermore, the new DSM is more liberal about age of onset of the disease, and makes allowances for people who have made gains since childhood that may have masked symptoms of the disease.”