Autism Community Awaits DSM 5 Changes

These days, my morning routine includes the following: after brushing my teeth, waking my kids for school and making their lunches, I check the website of the American Psychiatric Association to see if the Diagnostic and Statistical Manual of Mental Disorders 5 (DSM 5) has been released. It is due out this month and I have it preordered on Amazon.

I wait, but I am not alone. The world of professionals and families whose lives and work center on individuals with autism waits with me, because this revision of the DSM—the first in nearly 20 years—will include major changes to the criteria for autism spectrum disorder (ASD).

These proposed changes have generated controversy, including a comment from a renowned Asperger’s expert that the new criteria alone would cure the autism epidemic. Autism parent organizations and their lobbyists, fearful that their children will lose the diagnosis under the new criteria (and therefore lose services), have even lobbied in support of bills currently before some state legislatures (New York among them) stipulating that insurance companies, educational systems and those in charge of entitlements continue to use DSM 4 criteria for qualifying individuals for these services.

In thinking about this topic, we need to remind ourselves that the current diagnosis of autism is a behavioral one. There is no blood test, magnetic resonance imaging result or electroencephalograph study that can make this diagnosis. Rather, the diagnosis is made by professionals based on the presence of particular behaviors.

Recognition of the signs of autism is a task of pattern recognition: if one has seen this pattern of behaviors that constitutes autism previously and then sees it again, the signs will be recognized and the diagnosis can be applied. It is on this basis that I can accurately say that my secretary is an excellent diagnostician regarding autism. It is not unusual to get a call from the person at the registration desk telling me “Your autistic patient is having a hard time waiting . . .” even though the clearly autistic child has not been diagnosed yet and the parents have no idea that this is the diagnosis.

This child is not representative of the cases leading to the overhaul of the ASD criteria; the milder and more questionable cases are the ones that are fueling these changes. The criteria for autism spectrum disorder under DSM 4 allowed for quite a lot of subjectivity. While the most severe of the autism spectrum disorders, autistic disorder, required that a specific number (6 of 12) criteria be met, milder versions such as pervasive developmental disorder not otherwise specified (PPD.nos) required no minimum number of criteria but rather merely a flavor of impairment. And different institutions used the various diagnoses under the umbrella of the ASDs differently. Further, some of the criteria were inherently closely interrelated, not really separate criteria at all.

And so we have the revisions. These changes have been made by highly qualified and experienced clinicians based on review of 15 years of research. The goal in making these changes was to make the criteria more specific and less subjective, to better exclude those who really do not have the condition. This is especially important for research into etiologies (causes) of and treatments for autism. When the group of children with the diagnosis includes significant numbers who do not actually have the disorder, it makes the likelihood of finding etiologies and effective treatments more complex and less likely to be successful.

The new criteria will also provide a consistent way of indicating other clinically relevant factors relating to a given child, such as co-occurring language; cognitive, medical and emotional/behavioral diagnoses; pattern of onset of symptoms; and severity.

For the first time, sensory sensitivities, which are often described by parents and individuals with ASD as central to their functioning, will be included among the criteria.

I have some conflicting feelings about the new criteria. On the one hand, I regularly see children who carry the diagnosis of autism spectrum disorder whom I do not feel warrant the diagnosis. The new criteria feel more valid to me and are a better fit for describing the behavioral features that my pattern recognition skills suggest. The combination of greater validity and specificity of the criteria will help with the issue of overdiagnosis of ASD in individuals who do not really have the disorder.

On the other hand, I am concerned that healthcare systems may use a failure to meet these criteria by a child with clear deficits as a reason to deny needed services.

Overall, the diagnosis of ASD is not changing. The new criteria will not change who has ASD. I will not have to overhaul my pattern recognition skills to bring them in line with the new criteria. Rather, the new DSM 5 ASD criteria will be able to do a better job of matching what my diagnostic gut tells me. They will make it easier for me to document my observations in a formal way. The criteria will be a better fit for organizing relevant observations and teaching others how to hone their powers of pattern recognition, and will help further research into the causes of and treatments for autism. But the new criteria will have an impact on an individual level, leaving out—due to lack of clarity caused by milder or confusing symptomatology, young (or elderly) age or strong parental advocacy for the diagnosis—some patients who would have been previously diagnosed.

What does it all mean? Is it good or bad? The autism world as a whole will change this month, but we will likely have to wait far longer to understand the answers to these questions and how those changes will play out.