This is a blog post by Stephen Kanne, PhD, executive director of the University of Missouri Thompson Center for Autism and Neurodevelopmental Disorders. The Thompson Center is a proud member of the Autism Speaks, Autism Treatment Network. Dr. Kanne serves as Co-PI on the Autism Speaks-ATN grant.  

Parents and professionals alike have been following websites and other news outlets for a couple of years now, anxiously waiting to hear what changes are being planned with the new DSM-5, the fifth edition of the  “Diagnostic and Statistical Manual” developed by the American Psychiatric Association. We all thought that our world—the world of autism spectrum disorders—would be greatly affected.

New versions of the DSM have always been met with controversy and debate. The new DSM-5 is no exception. And rightly so; the DSM has a huge impact on how we diagnose patients, how insurance covers your children, and how clinicians talk to and understand each other about disorders. However, there are even deeper cultural implications: defining what behaviors are culturally acceptable or normal and what behaviors are considered atypical or even pathologic.

So, what are some of the big changes with the new DSM-5?  Previously we used the term Pervasive Developmental Disorders (PDD), a diagnosis that always required clinicians to go into long explanations to the families and parents. In DSM-5, what was formerly PDD is now being termed Autism Spectrum Disorders (ASD). A change welcomed by most clinicians with whom I have spoken.

But change is never easy. A second major change—and the one perhaps causing the most uproar—is the removal of separate categories under the overall ASD heading. The DSM-5 no longer recognizes specific diagnoses, such as Autistic Disorder, Asperger’s Syndrome, or PDD-NOS. Instead, there will now just be a single diagnosis, Autism Spectrum Disorder (ASD). Over the years, people have become accustomed to, almost comforted by, being able to put a label on the challenges they face. If, for several years, your son or daughter had been identified as someone with Asperger’s Syndrome and then one day that label no longer existed, it’s natural to experience anxiety and a lack of identity. But, even though the category or label may be changing, the goal of the DMS-5 was to better describe the types of behaviors that children exhibit rather than put them in one particular box.  The DSM-5 now includes better ways to capture level of language, adaptive skills, IQ, loss of skills, and other medical problems. These changes may actually provide a more individualized and descriptive diagnosis of your child.

In the past, we thought of individuals with autism as having problems in three key areas: social skills, communication, and restricted and repetitive behaviors (RRBs).  Many of us in the field, if asked to describe the core difficulties that individuals with ASD face, would have pointed to social communication problems. This is a primary focus of the DSM-5.  Another major change has been the reduction of the three key dimensions into two, combining socials skills and communication into one.  This better captures what clinicians have felt is a hallmark of ASD.  However, a subtle difference in the new DSM-5 is a stricter benchmark to meet criteria in the RRB area. This reflects recent research that highlights impairments in RRBs as a core ASD symptom along with social communication.

Many scientists studied the DSM-5 to see what effect these changes would have on how we diagnose autism. Many of these studies were based on early draft criteria and found that the DSM-5 appeared to be a bit less broad in its definition of autism and as a result, might end up excluding some children. This, too, caused a lot of anxiety: What would happen to these individuals? Would they lose services? Would everyone need to be re-diagnosed?

However, these early studies helped the DMS-5 authors refine their original criteria.  Newer studies have challenged the earlier findings, and though some individuals may lose their diagnosis, it appears to be less than originally predicted. In addition, many clinicians welcome this approach, as the older criteria may have been too broad, and sometimes included individuals who did not truly have autism.

For me, I welcome the changes. Why? We ran a couple of clinician workshops using both the old criteria and the new DSM-5 criteria. We found the new criteria lend themselves to a more careful and tailored approach to diagnosis, relying more on clinical judgment and allowing diagnosticians to better capture the nuances of the disorder. This level of personalization was lacking in older versions of the DSM because the way it was designed to categorize people according to an all or nothing checklist.

All of the clinicians in the workshop – every one of them – saw the new DSM-5 as a vast improvement over the older version.  All of us, as well, knew we would not truly understand the impact of the DSM-5 changes for several years.

For more information and resources on the DSM-5, click here.