Outgrowing Autism?

The authors of a recent study published in The Journal of Child Psychology and Psychiatry have created a buzz in the human service community. Deborah Fein, a researcher at University of Connecticut, and her colleagues studied a group of children and adolescents who had been diagnosed with Autism by the time they were 5 years old. The authors found that in this group, children’s symptoms had improved to the extent that the subjects no longer met the criteria for a diagnosis of Autism. Cognitive and psychological testing revealed no significant differences between these subjects and  a control group made up of children and adolescents with no psychiatric history. The authors avoided using the word “recovery” but the fact that they referred to their subjects as the “optimal outcome” group betrays their excitement about the results. After reading the study, my sense is that the results should leave us feeling encouraged, but that we should avoid getting too giddy about them.

Here’s some context for my reaction. Many human service professionals are well acquainted with the concept of the “diagnosis du jour.” From time to time, practitioners see an influx of clients who share a diagnosis that, in years prior, was seen relatively infrequently. Bipolar Disorder, ADHD, and Asperger’s Disorder have, at various times, each had a turn to become a “hot diagnosis” over the past decade.  In 2007, I started to see an interesting phenomenon that comes close to fitting into the “diagnosis du jour” category. That year, I saw a number of new clients whose parents all said something like “Well, we had him (it was almost always a boy) evaluated when he was 3 and they diagnosed him with PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified). It really seems like he’s outgrown it though.” As I got to know these kids, I found that the parents were often right in suggesting that their children no longer met the criteria for the diagnosis. However, observing their kids’ behavior over time made it understandable how other clinicians could have, at one time, come to the diagnosis they did.

As some of you may be aware, PDD-NOS is a diagnosis that going away shortly. This May, The American Psychiatric Association will be publishing the Diagnostic and Statistical Manual of Mental Disorders V (DSMV), the official set of criteria needed to diagnose any mental disorder. The DSMV will redefine the disorders that currently comprise the Pervasive Developmental Disorders. PDD-NOS, Asperger’s Disorder, and Autistic Disorder, among others, will all be subsumed into the category of Autism Spectrum Disorder. The APA justifies these changes by focusing on the difficulties that clinicians have had in reliably distinguishing between the various disorders in the PDD category. PDD-NOS does overlap with the other disorders but from my experience, kids who are diagnosed with PDD-NOS tend to have some characteristics of the other Autism related disorders but also have some delays in the development of expressive and/or receptive language.

So why is it that as these kids age, they no longer meet the criteria for a diagnosis along the Autism Spectrum? My hunch is that the age at which these kids were diagnosed plays a big role in the answer. Particularly because members of the study’s Optimal Outlook group were more likely to have been diagnosed with PDD-NOS than Autistic Disorder or Asperger’s Disorder, language development is likely to have played a role in many of their diagnoses. As parents know, all children develop language at their own pace. Because inclusion in this study required a diagnosis by age 5 as well as the presence of an early language delay, all participants were diagnosed at a time when language development was still very much a work in progress. With their language skills developing at a slower pace than their peers’, many of these young children probably did meet the criteria for PDD-NOS prior to age 5. As they aged and their language skills began to catch up, that was no longer the case. Did this development happen as a result of effective intervention or as the result of normal development that just got a slightly late start? My guess is that the answer is probably “a little of both.” On one hand, members of the Optimal Outlook group had milder symptoms, at least within the social domain, than members of the Autistic group did at the point of their initial diagnosis. This suggests that they didn’t really have as far to travel anyway and may have outgrown their diagnosis without any intervention. On the other hand,  the authors  reported that in the Optimal Outcome group, some subjects still showed vulnerabilities in the realm of executive functioning as well as a tendency towards anxiety and depression. So, even if their diagnoses were premature, these children undoubtedly had some issues that would call for intervention. Determining how much improvement was brought about through effective intervention compared to how much was the result of normal development is a topic well suited for a future study.

For me, the biggest takeaway from this study is a clear realization of just how big a double-edged sword early diagnosis can be. For many children, early diagnosis and early intervention are life savers. They are much more likely to thrive if social and behavioral patterns can be targeted before they become solidly ingrained. For others who “outgrow” the diagnosis, early evaluation can lead to undue anxiety and becoming unnecessarily labeled. My advice to parents whose young children receive such a diagnosis, particularly when it is described as mild, is to take what you need from your child’s evaluation in order to gain a fuller understanding of what makes him or her tick and to put appropriate services in place but to retain a healthy skepticism about the diagnosis. Let’s stay encouraged but let’s also wait and see what further research will have to say before we get too overjoyed.