Fudging the Autism Diagnosis

On April 2, The U.S. Interagency Autism Coordinating Committee (IACC) issued a statement regarding changes to the diagnostic criteria for autism spectrum disorders stemming from the publication last May of the DSM5. I found one section of the statement particularly curious. Here’s what it says:

“…the Committee cautioned clinicians to pay special attention to individuals with obvious ASD symptoms who narrowly missed being diagnosed with ASD according to the new criteria. In addition, the Committee strongly emphasized that, “Services should be based on need rather than diagnosis; it would not be appropriate for a child to be denied ASD-specific services because he or she does not meet full DSM-5 criteria if a qualified clinician or educator determines that the child could benefit from those services.”

Is it me or is this governmental committee suggesting to clinicians that if people don’t meet the criteria for a formal autism diagnosis, we should just fudge it if they come close?

Before I delve into that question, here’s a little context about the IACC and the DSM5. The IACC, first authorized by The Combating Autism Act of 2006, operates within the domain of the US Department of Health and Human Services. Its  mission is to “develop and annually update a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or ruling out a diagnosis; intervention, and access to services and supports for individuals with autism spectrum disorder.” It is comprised of representatives from government, academia, medicine, and the autism advocacy community. I read about their statement in the excellent blog Left Brain Right Brain but it hasn’t gotten a lot of attention in the news.

For those of you who are unfamiliar with the DSM5, its full title is the Diagnostic and Statistical Manual of Mental Disorders (5th Edition) and it is published by the American Psychiatric Association (APA). The DSM sets forth diagnostic criteria to be used by mental health professionals in the assessment of all “mental disorders.” Its publication marked the first major revision to the DSM since 1994 and, included within its pages are some wholesale changes in the criteria for a host of issues, including autism spectrum disorder. I have written about these changes in the past but the main point of the changes to autism  is the elimination of the subtypes (Asperger’s Disorder, Autistic Disorder, Pervasive Developmental Disorder – Not Otherwise Specified, Rett’s Disorder, and Childhood Disintegrative Disorder) and the creation of one overarching diagnosis (Autism Spectrum Disorder) that encompasses all the previous ones.

There are several problems with the IACC’s recommendation. For one, it exacerbates the problem that became the main impetus for changes in the autism classification to begin with. The APA rightfully maintained, that the old set of criteria did a good job of distinguishing people on the spectrum from people who are not on the spectrum but they were less effective at distinguishing those with one spectrum diagnosis, Asperger’s Disorder for example, from another, like PDD-NOS. By creating one unifying diagnosis, their hope was that clinicians would be able to make more accurate assessments. As I mentioned earlier, I’m not a big fan of the changes the APA made but I agree that there were significant problems with overlapping and arbitrary diagnoses that needed to be addressed. The IACC, by suggesting that clinicians stretch the new criteria in order to provide services to people who might be “spectrummy,” rather than meeting criteria for a formal diagnosis, has taken steps to muddy the waters further than they were before.

It’s also not hard to imagine what these recommendations are going to do to the numbers regarding the prevalence of autism. Over the last decade and a half, the numbers have already changed dramatically. According to the Centers for Disease Control and Prevention (CDC), in 2000, autism was estimated to be present in 1 out of every 150 people. In 2004, that changed to 1 in 125. By 2012, the rate reached 1 in 88 and, as of March 27, the estimate is 1 in 68. So if clinicians heed the advice of the IACC, and provide the diagnosis to help people access services for autism even when they don’t meet enough criteria for that diagnosis, that number is likely to rise even more and it won’t be based on reality.

My real problem with the IACC recommendations is that they serve to make diagnosis completely meaningless. Mental health diagnosis is a different animal than medical diagnosis. Mental health disorders are often comprised of traits shared by everyone to one extent or another – impulsiveness or anxiety being two obvious examples. To reach a diagnosable level, these issues need to reach a point at which they cause significant interference in people’s lives. By telling clinicians, in effect that if it’s close, just go for it, the IACC is taking the already blurry line where “normal” human behavior, cognition, and emotion crosses into the realm of the diagnosable and obliterating it. If diagnosis happened in a vacuum, this wouldn’t be a big problem. However, formal diagnosis affects issues around insurance coverage, eligibility for services, and many other areas. Having a universally agreed upon set of standards, even if its not universally loved, is vital.

There’s a part of me that takes some satisfaction at seeing the APA, by many accounts, an  overly political and intentionally insulated organization, getting some blowback. The National Institute of Mental Health and now the IACC are two formidable bodies that have expressed serious reservations about our new system. On the other hand, we all need to work together to formulate and adhere to a system that works in the interests of people with autism and this new set or recommendations is likely to make it harder to do that.