New Definition of Autism May Exclude Many

Usually, once a week, I teach a graduate class in diagnostics at a local college. Students are surprised to hear that the definitions of different mental health conditions such as ADHD or autism spectrum disorder can change. Any every few years, when the new edition of the DSM (Diagnostic and Statistical Manual of Mental Disorders) there are often changes. Most of these are brought about by new science, new understanding, experiments and research that helps re-define and make more specific how we make a diagnosis. This time around, as we prepare for the 5th edition, some people are concerned about the effects of many of the changes, especially those for Attention Deficit Hyperactivity Disorder (ADHD or ADD as it was once known) and autism spectrum disorder (ASD).

The proposed changes in the DSM for autism would, according to many, sharply reduce the skyrocketing rate at which this disorder has been diagnosed. And honestly, some days almost all of the calls to my office are from individuals who talked with a friend, read a newspaper article or saw something on the web that made them think they might possibly have autism. After talking with their family doctor, who usually has no idea how to make such diagnosis, they call me. Many want, more than anything, to get a diagnosis so they know what is wrong. But this is exactly where the new DSM is struggling. As a recent article in the New york Times puts it, "where to draw the line between the unusual and abnormal..." The new proposed guidelines are most likely going to exclude many people from the diagnosis who are "higher functioning" and move them from that the "category" of abnormal- or "diagnosable" to "unusual." Many people who are currently diagnosed as having Aspeger's disorder will most likely be left out.

currently at least a million children and adults have a diagnosis of Asperger syndrome (or disorder) or "pervasive developmental disorder-not otherwise specified- PDD-NOS - and endure many of the same social struggles and deficits that people with autism have, but they do not meet the criteria for ASD - autism spectrum disorder. The proposed changes to the DSM would put all three of these categories -PDD (Pervasive Developmental Disorder), Asperger's Syndrome, and Autism Spectrum Disorder (ASD) together, eliminating PDD-NOS and Asperger's from the manual entirely. Under the current criteria for a diagnosis a person can qualify for the diagnosis by exhibiting 6 or more of the 12 required observed or reported behaviours; under the new proposed definition a person would be required to exhibit 3 3 deficits in social interaction and communication and at least 2 repetitive behaviours, a much narrower definition for diagnosis. The problem is, especially in places like BC where a strict diagnostic procedure is enforced, kids may no longer qualify for a diagnosis of ASD (autism spectrum disorder) even though they have fairly significant behavioural and social deficits.  Some services are always driven strictly by a persons diagnosis.

Research shows that the new definition seems to have more of an effect on the "cognitively able" rather than the "classically autistic" child. Currently several studies are looking at how the new definition would effect diagnostic decisions. But if a diagnosis is suppose to guide treatment interventions, the real purpose of a diagnosis, then some changes really do need to be made. We will have to wait to see what the outcome is. No matter what happens, we do know the end result will be that some children (and adults) who currently qualify for a diagnosis will no longer qualify. Effort will need to be made to expand the criteria for getting help that even the "cognitively able" and "unusual" child needs to be successful.