Many Still Fear DSM-5 Autism Criteria will be Exclusionary
by Emily Willingham –
When news broke that the autism spectrum categories of Asperger’s disorder and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) would get subsumed into the wider maw of a general “autism disorder,” people worried. They worried about autistic people who are quite verbal or who have typical cognitive skills. What would happen to individuals whose autism doesn’t manifest in those terms as profound? The biggest concern was a new category for the Diagnostic and Statistical Manual of Mental Disorders (DSM)-5, social communication disorder. Would people like my son, diagnosed with Asperger’s and whose autism includes echolalia, anxiety, motor deficits, repetitive behaviors, learning differences, and other features well beyond the social, get rolled into what looks like a flimsy, catchall not-safety net of “social communication disorders”? And what other kind of communication is there if not social?
Based on early reports, the concerns were legit. One alarming presentation at a January 2012 conference in Iceland claimed that only 45% of people diagnosed with Asperger’s disorder or PDD-NOS would retain an autism spectrum diagnosis under the new guidelines. Those findings were preliminary and controversial, but further worrisome conference reports trickled in, all suggesting that the new autism diagnostic criteria proposed for the DSM-5 would exclude a good-sized percentage of people currently diagnosed on the autism spectrum.
Then a peer-reviewed version of the study presented in Iceland emerged in March 2012 suggesting that the new criteria would be pretty good at excluding appropriately people who aren’t on the autism spectrum but have limited ability to capture people who are. According to that study, the autistic people who would be overlooked under the new guidelines happen to be those without intellectual disability and who would fit the current criteria for Asperger’s disorder or PDD-NOS. People like my son.
Each of these studies had some limitation–the choice of population, not originally designed to evaluate DSM-5 criteria–that made their conclusions wiggly. Now there’s a new study out, one packed with data, focused on three clinical populations with different features, assessing how well the new criteria compare to the old in capturing autistic people and excluding the non-autistic. The headlines promise us that we will see “less impact” with the new definition or that the proposed guidelines “won’t miss autism cases” much more than the old ones. That, of course, begs the question of why we’d need to change the criteria at all.
But a review of the paper (abstract here) calls into question blithe assurances that people who might fit current Asperger’s and PDD-NOS diagnoses have nothing to worry about. What the authors really found was that the new criteria could end up excluding about 1 out of 10 children who meet the existing criteria for spectrum disorders. Given the oft-trumpeted 1 in 88 with autism in the United States, that rate of exclusion of people who should be included translates into a tens of thousands of individuals. And let’s not forget that the existing criteria, according to this study, correctly identify those who have autism at a higher rate than the proposed criteria do.
Where the old and new might distinctively part ways is in how well they exclude people who don’t have autism from receiving an autism diagnosis. The old criteria don’t do this as well, although how well depends on the specific population and diagnosis. From where I’m sitting, it looks like we’re making an untenable bargain: missing out on more people who have autism to avoid misdiagnosing people as having it when they don’t. The people we miss will live with an unrecognized disability that interventions and supports could help, and the people diagnosed with it who don’t have it will receive therapies that may or may not help them. Is no better option available? I think there is.
Read more at New DSM-5 Criteria For Autism — Who Will Be Left Behind?.