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Q&A: How will a new definition of autism change care?

March 01, 2012

Controversy is swirling around a proposal for a new definition of the collection of disorders commonly known as autism—a change that could narrow the criteria for diagnosis, and impact the way educational, health and social services are distributed.

A task force appointed by the American Psychiatric Association is working on the new definition. If it’s accepted, it will be published in 2013 in the fifth edition of the “Diagnostic and Statistical Manual of Mental Disorders (DSM),” the standard reference for mental disorders used by insurers and psychiatrists.

Child psychiatrist Fred R.Volkmar, MD, director of the Yale Child Study Center, is publishing research in the April print edition of the Journal of the American Academy of Child and Adolescent Psychiatry, already available online, that he thinks should be considered by the task force. Dr. Volkmar authored the study with colleagues James McPartland, PhD, assistant professor and licensed clinical psychologist, and Brian Reichow, PhD, associate research scientist.

In a conversation in Dr. Volkmar’s office, the three answered questions about the study and the controversy.

Can you provide some background about the controversy?

Currently autism spectrum disorder covers multiple diagnoses, including autism, Asperger’s syndrome and PDD_NOS (pervasive developmental disorder not otherwise specified). In the proposed definition, there is only one diagnosis—autism spectrum disorder. Either you have it or you don’t, depending on whether your symptoms fit the description. That has prompted a couple of fundamental conversations. One revolves around the worry that the proposal could exclude children who currently qualify for services.

In addition, a major change in the definition would pose issues for comparing results across research studies. Last year we had about 2,000 scientific papers about autism, but with a new definition, we would have to start fresh. We can’t compare new data with old data if the old definition is dramatically different.

In your study, how did you determine that many patients could be excluded?

In 1994, we conducted a large scale field trial to collect data from nearly 1,000 patents from various sites in the United States and abroad. Clinicians evaluated patients and measured their different symptoms to figure out the best balance of sensitivity and specificity. Sensitivity is accurately picking up someone who has the disorder, and specificity is accurately excluding someone who doesn’t have it.

We took all of the individual symptoms that people with autism have, and then grouped patients into those who the clinicians thought did or didn’t have autism. We made an algorithm and found that overall, in the population we studied, only about 60 percent who met the criteria for autism would continue to do so under the new definition.

Which patients do you believe would be most impacted?

We believe it would especially impact higher functioning patients, including as many as 75 percent of children currently diagnosed with Asperger’s disorder. These are children who may have a normal or even high IQ, but who have difficulty with social interaction. In our research, the new definition would not include 84 percent of those with PDD-NOS. Additionally, we think about a quarter of those currently diagnosed with autism proper would also not meet the criteria.

The new manual would also add diagnoses, such as “social communications disorder,” which hasn’t existed before. So people with combinations of symptoms that no longer fall under autism might fall there. But it’s unclear whether that disorder will qualify people for services. A lot of this is not black and white. There is lots of gray.

What services could some people potentially lose?

First of all, they could lose psychiatric services. These patients often get anxious, they often get depressed. There are educational services, including certain accommodations in classrooms that are critical in terms of eventual outcome. We need to give them special attention, such as letting them switch classes before the hallway is flooded with students, and helping them maintain a schedule and giving other supports to facilitate learning. They also need help with life skills, such as applying to colleges.

Decades ago, most of these people were institutionalized. Now there are many who are mainstreamed in school, have jobs and live independently. It’s very clear that the availability of services helps them.

You mentioned the impact on research. How important is research right now?

Research is very important. We are on the threshold for the first time of being able to follow genes to behavior to the brain, and back again. This could allow us to do things that are vastly different than what we are doing now. Based on our growing understanding of the genetic path, in the next several years, there might be medications—we don’t know yet what possible treatments there will be. But we do know that we’re right on the verge.

Do you think your study will influence the task force’s decision?

This study is a valuable piece of information, but it’s only one piece of information. We need more. The patients in our study were diagnosed in the early 90s, and it would help to have more recent data. A few other studies used more recent patients and found far lower rates of people being excluded. But those used very small samples, or they relied on parent reports instead of direct clinical evaluations. So each study has its limitations. But we think the task force should consider the available research before finalizing DSM diagnostic criteria.

At this point, what can you tell concerned families?

The jury is not out. The process is being scrutinized by the task force and other interested parties. The task force is composed of experts who care, and they are paying attention to the data. We believe the most important thing is that there is clear data behind the decision. We think our study helps inform that.

To contact the Yale Autism Program, call 203-785-3420.

Submitted by Mark Santore on December 16, 2013