By Wendy Donahue, Tribune Newspapers
2:25 PM EDT, July 2, 2014
From headline-grabbing studies to prime-time TV, autism has entered mainstream conversation like never before.
The Centers for Disease Control and Prevention recently reported that autism rates rose nearly 30 percent from 2008 to 2010. The condition is estimated to affect 1 in 68 of American 8-year-olds, up from 1 in 88.
Many experts attribute that to rising awareness and diagnosis rather than an actual increase in prevalence.
But the American Psychiatric Association's revised diagnostic guidelines could affect that trend. The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), released in May 2013, eliminates subtypes of autism such as Asperger's syndrome — just as it entered pop culture via characters in NBC's "Parenthood" and FX's "The Bridge" — in favor of a more general diagnosis of autism spectrum disorder (ASD).
A year into the reshuffling of the puzzle, clinicians say it's still too soon to see where the pieces will settle, particularly with regard to insurance coverage.
But Bridget O'Connor, president and CEO of Giant Steps in Lisle, Ill., which runs a school for children with autism, said the new criteria better reflect a disorder whose symptoms span a spectrum, without clear lines of demarcation.
"If anything, the DSM is now aligning to what we already know and see each day with our students," O'Connor said. "Interventions and treatments for all of the previous subgroups are so similar that it makes sense to categorize them all under ASD."
People with autism have difficulties with social communication as well as restrictive or repetitive behaviors and sensory interests. Early intervention and treatments such as applied behavior analysis have been shown in numerous studies to improve outcomes.
A recent study from the Columbia University School of Nursing, published in the Journal of Autism and Developmental Disorders, estimates that the diagnostic changes could reduce by almost one-third the total number of people being diagnosed.
"We are potentially going to lose diagnosis and treatment for some of the most vulnerable kids who have developmental delays," study co-author Kristine Kulage said. "There may be individuals going forward who need services and would benefit from them, who would not be able to get them because of the rewriting of the diagnosis."
The previous edition of the DSM included three distinct subgroups under the broad definition of ASD: autistic disorder (AD), Asperger's disorder and pervasive development disorder-not otherwise specified (PDD-NOS).
The latest edition of the manual eliminates those subgroups. It adds a new subcategory called social communication disorder (SCD) to diagnose people who have verbal and nonverbal communication impairments but lack other attributes associated with autism.
Some people diagnosed with PDD-NOS under the old manual would be identified as people with SCD under the new manual.
Some states are "grandfathering in" those diagnosed under the old criteria so they don't lose insurance coverage, said Genevieve Thornton, a clinical psychologist and owner of SociAbility in Northbrook, Ill., which offers programs and therapy for children and adults with ASD, ADHD and related conditions.
About 75 percent of her practice is focused on those with Asperger's, often viewed as milder, "high-functioning" autism.
Some are upset the label is being dropped from the manual.
"I'm hoping the Asperger's label will continue to be used because it means something that many people understand," Thornton said.
"Over the past several years people who have it have developed an increased understanding of themselves, and some take pride in their unique identity, understanding their strengths as well as differences."
Peter J. Smith, a developmental behavioral pediatrician and associate professor in pediatrics at the University of Chicago, notes that autism language has been evolving from the time the disorder was described in the middle of the last century.
"I generally don't use the term 'diagnose' with autism partly for that reason. I describe them as 'meeting criteria for,'" Smith said.
"These (diagnostic) changes are theoretic for most clinicians and sort of on the margins. If a child or young adult is impacted, I have no problem giving the term 'autism spectrum disorder.' The criteria are expanding, so more children meet them now than in the past."
Then he gets to what really matters: "What are they trying to do in life, and how can we help them get there?" he said.
In recent years, many states have mandated that insurance companies cover applied behavior analysis, delivered by a board-certified behavior analyst, for people diagnosed with an ASD, said Dr. Jeff Skowron, a licensed psychologist and clinical director for Autism Intervention Specialists in Worcester, Mass.
As insurance companies adapt to the diagnostic changes, he said, some plans may not cover services for the new social communication disorder. That could lead to inappropriate diagnoses to enable the person to obtain treatment.
Thornton said autism research, advocacy and education must continue.
"Look at the population — this is 1 in 68," she said. "Just about everybody I know has a relative who's impacted by an ASD diagnosis. They can, with the right help and support, be successful."
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