A proposal to change the criteria for diagnosing autism has advocates and parents worried that some children will be boxed out of services and support.
Experts, convened by the American Psychiatric Association, want to create a new category called “autism spectrum disorder.” The umbrella diagnosis would include a range of now-distinct conditions such as Asperger’s disorder.
Montgomery County attorney Josh Kershenbaum, who represents families with special- needs children, said the proposed guidelines would mean some very high-functioning people would no longer get a autism diagnosis although it’s clear they need extra help.
“We know this child has needs. We don’t care what you call it, we know he’s not making friends, we know that he is not able to follow the routines in school, he has very rigid behavior,” said Kershenbaum, who represents families with special- needs children. “The problem is that we dole out benefits, and services and rights based on categories. That’s just how our society works.”
If adopted, the new criteria would be included in the next edition of the Diagnostic and Statistical Manual of Mental Disorders, the manual used by doctors and researchers to diagnose mental disorders.
There’s big disagreement about just how many people might be “written out of the book,” Kershenbaum said.
Supporters say the change will help make diagnoses more precise. But opponents worry the change will have a trickle-down effect and become a litmus test for special education assistance and other benefits.
“With so many economic pressures on policymakers and schools, it could be tempting for them to adopt the DSM guidelines as their own in order to shrink the population that qualifies for services,” Kershenbaum said.
Right now, changes to the DSM do not necessarily trigger changes to eligibility for Medicaid or Social Security Assistance.
Kershenbaum says some parents suspect the change is a move to curb the autism epidemic.
“If somebody decided to ‘nip’ the obesity epidemic in the bud, by changing the definition of obesity, all those people who magically stop being obese just because of the change in the number still have a significant need,” he said.
Michelle Rowe, who leads the Kinney Center for Autism at Saint Joseph’s University, said she understand parents’ concerns.
“These families often have to fight for what they get. The idea of losing what they’ve fought so hard to get is disturbing for most of them,” Rowe said.
At Kinney, therapists consider more than a child’s diagnosis when they design services, Rowe said. Behavior and its impact on quality of life are also important.