Diagnostic Labels: How Are They Changing?

May and I attended the Southeast Regional NATSAP (National Association of Therapeutic Schools and Programs) in Asheville, NC on October 18th and 19th.  One of the speakers at the conference was Jeff Wilson, M.D.,  from the Aspen Institute for Behavioral Assessment.  He addressed the upcoming changes to the DSM.  For those of you that don’t know, the DSM is the diagnostic and statistical manual that classifies and attempts to diagnose mental and learning disorders and illnesses.  The first classification system or DSM was created in 1952.  Why are the changes to the DSM important, you ask?  Because the diagnostic codes used often determine whether or not a student or patient receives medical services by insurance companies or learning support from school districts. This should be VERY important to any parent with a child with either a learning difference or a mental health issue!

In addition to some substantial classification changes which we will talk about later in this blog, part of the reason for “updates” has to do with when a word used by mental health professionals becomes perjorative, such as the term mental retardation (MR). In the new DSM, MR will be known as intellectual disability disorder.  I remember once we had a young woman who had been diagnosed with Obsessive Compulsive Disorder (OCD).  Now, almost all of us joke that we are “OCD”; however,  if you actually see someone who struggles with true OCD, you know it can be debilitating.  This young woman looked at May and me, and said why do they say I am a disorder?  The reality is that some mental illnesses do plague people throughout their entire lives, but she IS NOT OCD, she has OCD.  Even that usage bothers me a bit.  Why don’t we say she is a human being who deserves respect and love and also suffers from a condition known as OCD?

Anyway, the big news coming out about the updated DSM5 (www.dsm5.org) is that they now lump a bunch of disorders under the general heading of neurodevelopmental disorders.  Underneath that category is:  autism spectrum disorders, ADHD, specific learning disorders, communication disorders, and motor disorders.  While many clinicians will argue strongly to keep Asperger’s Syndrome as a separate disorder/diagnosis from autism, the powers that be felt that putting them in one general category might enable people who were not qualifying for services to get them. 

A counter argument, from the audience, came from a woman with a child diagnosed with Asperger’s. Her opinion and real concern was that kids with an Asperger’s diagnosis might get automatically put in an ED (emotionally disabled) classroom or a self-contained special education classroom in a public school system. Of course, most of us have seen children with an Asperger’s diagnosis who are very bright or even gifted!  What they have in common with kids that are high functioning autism is that they lack social reciprocity, or lack the ability to have a normal back and forth conversation.  Since they sometimes do not have as much emotion in their verbal communication as the general population, they are often described as having abnormal prosody (the normal inflections and pauses in speech of people with normal social skills).  What typically separates a high functioning autism diagnosis from an Asperger’s diagnosis is a delay in language, whereas it is typical for someone with Asperger’s to begin to speak and acquire language early. The other diagnosis that has been used frequently (at least we see it at The Price Group in psychoeducational assessments) is a diagnosis called PDD, NOS,  which stands for pervasive developmental disorder, not otherwise specified.  While this diagnosis was often a “catch all” for times when a psychologist couldn’t easily determine the subtle differences, for parents, hearing that your child has pervasive developmental disorder gave the hope that with time, their child could fully develop.  We do know of some private schools who would under no circumstances take a child with an autism spectrum diagnosis but would take a child with a PDD diagnosis.  We think this type of rigid, all or none admission criteria is just plain misinformed!  Many kids with any of these diagnoses, be it autism, PDD, or Asperger’s, can function quite well in a relatively traditional learning environment. What they need to succeed often is help to understand subtle social cues and for adults to ensure that there is a strict policy against and vigilant oversight of any bullying.   

Another change in the new DSM is that ADHD has been removed from a category called Disruptive Behavior Disorders and is now classified under Neurodevelopmental Disorders.  We applaud this change as we believe kids with ADHD are neurologically different from their same aged peers but are not disruptive in the same sense as a kid with an ODD (oppositional defiant disorder) or conduct disorder diagnosis.  Children and adults with ADHD do not purposefully seek to “disrupt” a classroom or home. 

Another big change in the DSM attempts to make it possible to have a child diagnosed with a mood disorder and yet still NOT be diagnosed with BPD (bipolar disorder).  In our opinion, way TOO MANY children currently have been diagnosed with BPD and are treated with a cocktail of drugs.  We see many who appear to be over medicated.  (Let us hasten to add that we are not M.D.’s and these are just anecdotal observations!). A new diagnosis for children will be Disruptive Mood Dysregulation(DMD).  What makes this diagnosis far more promising is that not ALL children who get diagnosed with DMD will become adults with BPD.

One last change that is worth mentioning is an attempt to help clarify that there are some children and adolescents who engage in self-injurious behaviors but are NOT suicidal.  This behavior is now classified as non-suicidal self injury.  We see these children often in our practice.  Many have experienced early trauma and do this behavior as a way to self-soothe. Often they hide these injuries well and parents have no idea of the behavior.  Related to this diagnosis, but considered more severe, is the new diagnosis of suicide behavior disorder, which again does not automatically lead to a bipolar disorder for a lifetime.

 Sorry for a blog which deals with such negative, depressing topics!  All of us have family members who suffer from mental illness.  All of us need to show compassion and tolerance for our family members who do suffer from some of these diagnoses and we all need to work hard to help them find both proper medication and treatment.  As a parent said recently in an interview, “If I had diabetes, and didn’t seek treatment, you would say I was being both crazy and irresponsible.  Yet, when a family member suffers from a mental illness or a learning disorder, we sometimes think of it more as a moral issue than a medical issue.”  When we all seek to learn more and learn to reduce negative terms and stigmas, we move closer to a society that promotes tolerance and acceptance of differences.  And, after all, we are all different and from a spiritual standpoint would do well to judge less and love more.

Louise R. Slater

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