Advice & Support

Jan. 20, 2012 | Caroline Miller

In a move surely intended to reassure parents, the American Psychiatric Association today rolled out two new field studies of the proposed changes in diagnostic criteria for autism for DSM-V. Unlike the study that hit the news yesterday, these showed that kids on the higher end of the spectrum, those with Asperger's and PDD-NOS, won't be excluded after all.

Actually, the new studies weren't quite rolled out, but the association's director of research, Darrel Regier, told Bloomberg about them, obviously to counter the alarm in the autism community generated by yesterday's study suggesting that the new criteria for DSM-V would disqualify as many as half of those on the higher end of the spectrum.

"One of the field trials showed a 1 percentage-point rise in diagnosis rates under the new criteria and the other showed a drop of 4 or 5 percentage points, " Bloomberg reports being told by Regier, who is also vice chairman of the task force on the new guidelines. "There was concern that by tightening the criteria we would drop the bottom out from people with previously diagnosed autism," Regier told Bloomberg. "We don't think that's likely to happen, based on our assessment."

And Dr. Catherine Lord, director of the Weill Cornell Medical College/ NY Presbyterian Hospital Institute for Brain Development, clarified further:  "The intention isn't to exclude people who meet the criteria for any of the conditions. It's just to be sure we aren't including everyone who has any kind of behavior problem."

The dueling studies underscore the importance of staying tuned as the task force continues to work towards a December finish. Geraldine Dawson, chief science officer of Autism Speaks, puts it well when she tells Bloomberg: "From the scientific side, the changes make a lot of sense. We need to think through the implications for the real people who are in the real world trying to obtain the services they need."

Landon Bryce has a thoughtful analysis of the issue at thAutcast, supporting the end to separate diagnoses for Asperger's and PDD-NOS, which will now be included in autism spectrum disorder: "Diagnosis varies too much from doctor to doctor, and level of functioning varies too much within the life of an autistic individual, for rigid categories to make sense." But he also notes the general pressure to curb autism diagnoses.

There is, and will continue to be, a push to diagnose fewer people with autism.  This is mostly an economic issue: it's just getting too expensive to have all these autistic people and their families around clamoring for services.  People are already being undiagnosed at pretty alarming rates—kids who had 1-to-1 aides last year are less likely to get them now, and people are finding new roadblocks to getting the insufficient help they were getting a couple of months ago.

Undiagnosing people who need services surely isn't the intent of the proposed revisions to DSM-V. By the time the dust settles we hope it will be clear that it isn't the effective result. Researchers, clinicians and families in the autism community need to be on the same side on this—for criteria that will be more effective, not more exclusive.