To read on Slate:
You Do Not Have Asperger’s
What psychiatry’s new diagnostic manual means for people on the autism spectrum.
The autism community is a fractious bunch. We argue over the causes of autism, the best treatments, or even if it should be treated at all. But we do share a common anxiety: the DSM-5. This latest version of the Diagnostic and Statistical Manual of Mental Disorders, released by the American Psychiatric Association this month, officially eliminates many familiar autism spectrum diagnoses. Asperger’s syndrome (typically applied to those with no intellectual disability or language deficit); pervasive developmental disorder, not otherwise specified (generally given to higher-functioning individuals who may not meet all the criteria for autism); and childhood disintegrative disorder (attached to kids who develop typically and then experience severe regression after the age of 3) are now incorporated into the single diagnosis of autism spectrum disorder. This anxiety ranges from a mild concern on the part of some parents to angry protest: More than 8,000 people signed an online petition circulated by the Global and Regional Asperger’s Syndrome Partnership; another petition sponsored by Asperger’s Association of New England received 5,400 signatures.
The logic behind the changes seems sound. “There wasn’t any evidence after 17 years that [the DSM-IV diagnoses] reflected reality,” says Bryan King, director of Seattle Children’s Autism Center, who served on the APA task force charged with revamping the diagnosis. “There was no consistency in the way Asperger’s or PDD-NOS was applied.” In fact, a 2011 study by Catherine Lord (another member of the task force) and more than 35 colleagues reported, “In these 12 university-based sites, with research clinicians selected for their expertise in ASD and trained in using standardized instruments, there was great variation in how best-estimate clinical diagnoses within the autism spectrum (i.e., autistic disorder, PDD-NOS, Asperger’s disorder) were assigned to individual children.” In other words, the diagnoses children received depended largely on where they were diagnosed. (…)
(…) Parents of lower-functioning kids are also concerned about how the influx of high-functioning individuals will affect the public’s perception of autism—mainly because they feel autism is a serious disorder that people should associate with profound disability. One mother commented online that “the proposed DSM change would diminish the enormity of the challenges that those with moderate to severe autism have.” Ursitti, who has a daughter with Asperger’s and a son with severe autism, feels this is already happening: “If we have this national perspective that autism is a blessing, that it’s not a crisis, the ones who will lose out are the expensive ones, the severe ones. Legislators focus on the cheapest option, and celebration is cheaper than treatment.” Read all article.