How Will the New Definition of Autism in DSM-5 Affect Children? Parents, Advocates Anxious Over Changes.

Photo: Marta Nardini/Getty ImagesWhen Kim Covell’s son Dylan was 6 years old, the Long Island mother of three witnessed a major change in him.

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“Seemingly overnight, my joyful son with the infectious belly laugh was afraid. He was afraid of everything, anxious, nervous and sometimes, I am convinced, did not even recognize me as his mother,” wrote Covell in a 2012 piece for the Journal of Autism and Developmental Disorders.

“For months he would cry, alternating between the phrases ‘I am nervous’ and ‘I am sad.’ In desperation, we tried medication, which only intensified his distress,” she wrote. “And then he was quiet. The fear was replaced with emptiness.”

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It was the start of a long road that would lead Dylan, now 14, to be first diagnosed with autism, and, later, with childhood disintegrative disorder (CDD), a much more rare form of autism, marked by a severe loss of social and communication skills. And while the shift in diagnosis did not make a major impact on Dylan’s course of treatment, Covell is now worried about future research into CDD because of one basic fact: The disorder is being removed as a diagnosis in the forthcoming fifth edition of the Diagnostic and Statistical Manual, or DSM, due out this month. Published by the American Psychiatric Association (APA), it is the bible of mental-health disorders, used to diagnose mental illnesses, and the new edition represents the first major rewrite in 20 years.

“For those who fall outside of a ‘classic’ autism diagnosis, like Dylan, the change in the definition will have a definite and serious impact on research,” said Covell (whose fear is shared by experts, including the director of the Yale Child Study Center, autism expert Fred Volkmar). “Without the specific diagnosis of CDD, researchers will be hard-pressed to get funding for studies into this particular form.” And that, she added, “would end any hope” of solving the mystery of CDD, for which there is no known cause or cure.

The disappearance of CDD is far from the only change to autism-related disorders in the new DSM-5. Asperger’s disorder and pervasive developmental disorder not otherwise specified (PDD-NOS) have also been removed, with all three now encompassed by the main diagnosis of Autism Spectrum Disorder. And criteria for diagnosis appear to have been tightened, requiring more consistent social and communicative difficulties, as well as more of what are called “repetitive and restrictive behaviors” than with the previous DSM. Children will be assessed using the criteria, and diagnosed using three severity levels.

The APA says the update is meant to help both clinicians and families. "The revised diagnosis represents a new, more accurate, and medically and scientifically useful way of diagnosing individuals with autism spectrum disorder," David Kupfer, chair of the DSM-5 task force responsible for the changes, told Yahoo! Shine. "The symptoms of people with ASD fall on a continuum, with some individuals showing mild symptoms and others having much more severe symptoms. This spectrum will allow clinicians to account for the variations in symptoms and behaviors from person to person."

But the changes have sparked significant controversy and side taking since first announced by the APA in 2012, prompting a series of online petitions and angry editorials. And, though the new criteria have been put to the test by a series of studies, results varied, and exactly how the changes will affect the estimated 1 in 50 school-age children with some form of autism largely remains to be seen.

“The question is not whether some will lose their label,” noted Volkmar, “but rather, how many?”

Volkmar’s colleague James McPartland, a professor at the Yale Child Study Center, spoke about the uncertainty in “Autism by the Numbers,” a center video. “It’s not known what will happen to people who no longer meet criteria for autism in terms of services and care.” He added they would “no longer qualify under an autism spectrum diagnosis,” but may fit in under a new diagnosis, social communication disorder, added because “social communication deficits are one component of autism spectrum disorder,” according to the APA. But, because SCD is new, there’s no protocol in place for how to deal with kids with the diagnosis, and, says McPartland, “it’s unclear what the impact would be.”

Holly Bortfeld of the non-profit Talk About Curing Autism, where she is lead author and head of support services, told Shine she fears the introduction of social communication disorder in the DSM will only present new problems, mainly for schools, which have no infrastructures set up to support kids the way they do for those with, for example, Asperger’s.

“If you have Asperger’s, they know what to do,” said Bortfeld, who has a son, 17, diagnosed with autism at 2, and a daughter, 19, diagnosed with Asperger’s at 12. “With social communication disorder, there’s no curriculum, nothing set up. And the therapy wouldn’t be covered by insurance.”

How insurance companies will respond to the DSM changes is yet another question mark, experts say. But qualifying for school or other government-provided services, Bortfeld contended, is sure to be impacted—negatively, she fears—by the changes. Because, in her experience, though schools are supposed to provide support to children based on need, and not a diagnosis, “that’s not always how it works.” Further, she added, “The DSM is the qualifier for services through the state, so Medicaid, SSI [Supplemental Security Income]—that diagnosis is the first thing they look for.”

Schools are supposed to reevaluate students who are in need of support every three years, Volkmar said. “We’ll have to see, but I fear this will be an opportunity to lose the label, and therefore lose services.”

But, said Kupfer, "Anyone accurately diagnosed with autistic disorder, Asperger’s disorder, childhood disintegrative disorder, or pervasive developmental disorder not otherwise specified using DSM-IV should still meet the criteria for ASD or another DSM-5 diagnosis."

According to a 2012 study on the potential fallout from changes, a team led by Volkmar performed an analysis of symptoms in nearly 1,000 individuals who were evaluated for autism in the field trial for the DSM-IV. They found that about 25 percent of those diagnosed with classic autism—and 75 percent of those with Asperger’s Syndrome or PDD-NOS—would not meet the new criteria for autism. The study also suggests that higher-functioning individuals may be less likely to meet the new criteria than individuals with intellectual disabilities.

The APA criticized the study soon after it was published for having “serious methodological flaws."

Another study published that same year in the American Journal of Psychiatry did have more encouraging findings. The research, funded by advocacy organization Autism Speaks and the National Institutes of Health, involved an expert review of more than 5,000 case files of children who had been evaluated for Autism under the DSM-IV criteria. It found that the new DSM-5 criteria did not miss a significant number of previously diagnosed children. A related report, a DSM-5 field trial, involved the evaluation of 63 school-age children in Massachusetts and California, and found diagnoses using DSM-5 criteria to be reliable.

While Autism Speaks chief science officer, Geraldine Dawson, stated in a letter on the organization’s website that she was “cautiously optimistic” about the changes as well as the findings of the studies, she did note that the field trial was “a relatively small sample of school age children from largely Caucasian backgrounds. Adults with autism were not included, so we don’t know how the proposed diagnostic criteria might affect them. We also don’t know how the proposed changes will affect diagnosis of very young children.”

Another study, published in February, out of the Penn State College of Medicine Department of Psychiatry, 125 children were assessed using criteria of DSM-IV, DSM-5, and the Checklist for Autism Spectrum Disorder, yet another diagnostic instrument. It found that only 27 percent of children with PDD-NOS qualified as having Autism Spectrum Disorder according to the new DSM-5 criteria.

Despite the results, some experts, including James Ball, autism consultant and author of "Early Intervention and Autism: Real-Life Questions, Real-Life Answers," are optimistic about the changes. “For any really good diagnostician or practitioner who knows what they’re doing, children who would have been on the spectrum before will most likely still be on the spectrum now,” he told Shine.

“Bottom line is, if you have Asperger’s, it’s not like you don’t have anything now,” he said, adding that he’s known of situations in which a doctor gave a PDD-NOS diagnosis just to protect the parents of a very young child from having to deal with the label of autism (something that happened, at first, to Bortfeld, when she first brought her young son to a doctor). In other words, autism would have been accurate, despite the name the disorder was given.

“I actually think it’s going to be more inclusive of people, because it’s not going to make all these separations,” Ball added. “And it will help places drive services that are appropriate. A lot of time you hear ‘Asperger’s’ and you immediately think, oh, high-level kid, going to college, has a lot going on.” Being labeled with autism, he suggests, might help prevent those high-functioning kids from getting overlooked.

And as far as school support goes, Ball truly believes that most schools want to provide the best services. “You can call [the disorder] anything. But services are in place to help a kid. They’re about driving the program, and affecting how a kid is impacted educationally.”

All in all, he’s cautioning a wait-and-see approach.

“I think at this point there is just so much misinformation out there,” Ball said. “Let’s get the DSM-5 out there, and let’s see what it does.”

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