How Autism Grew my Faith

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Did DSM-5 get it right with ASD?

The long awaited updates to the DSM were released with great anticipation, even pomp and circumstance in May 2013.  Even for clinicians, change is never easy. The changes in the DSM-5 are greatly applauded by some and criticized by others. Perhaps the loudest outcry  came from the Autism/Asperger’s community, and I was one of those voices.  There is good reason for the concern as it pertains to the diagnostic criteria of the new category broadly called Autism Spectrum Disorder in the DSM-5.

                The clinical community who is tasked with revising the DSM is also given the responsibility of classifying and researching what symptoms make up a disorder or diagnosis which gives clinicians a common language for classifying and treating clients/patients.  What this manual determines as the guidelines for diagnosis then impacts how insurance is billed and what services a person can receive in a school or job setting.   

There are 2 major things that have upset clinicians and educators who work with persons on the spectrum. The first is the removal of PDDNOS and Asperger’s Syndrome.  Scientific studies reviewing and researching the new diagnostic terms show that it is these two groups of individuals that seem to be excluded from the new criteria. This is primarily problematic in services to be received in the school setting. For those previously diagnosed with PDDNOS or Asperger’s who were receiving services in most places are “grand fathered in” to the ASD diagnosis and still receive services. The issue becomes the thousands who could have received services but now may be excluded with the new diagnostic criteria. The other major change that upsets those of who work primarily in this field is the change from 3 major criteria in DSM-IV-TR to two criteria in the DSM-5. In the previous manual there were three criteria in which to judge if a person showed autistic characteristics: social skills, communication, and repetitive or restricted behaviors. In the new manual there are now only two as social skills and communication have been combined into one criteria. That may seem subtle, but that is a big change.  Also, in the DSM-5 there is a stricter criteria for what meets the standard of a repetitive or restrictive behavior.  This is also problematic because how one demonstrates their restrictive behavior may be dependent on their temperament, home environment,  access to therapies or help  managing those behaviors.

The new manual did include a new diagnosis called Social (Pragmatic) Communication Disorder. It is thought many who previously qualified as Asperger’s Syndrome or maybe even PDDNOS might better fit in this diagnosis.  Here is how the manual explains it for us:

 “Individuals with autism spectrum disorder may only display the restricted/repetitive patterns of behavior, interests, and activities during the early developmental period, so a comprehensive history should be obtained.  Current absence of symptoms would not preclude a diagnosis of autism spectrum disorder, if the restricted interests and repetitive behaviors were present in the past.  A diagnosis of social (pragmatic) communication disorder should be considered only if the developmental history fails to reveal any evidence of restricted/repetitive patterns of behaviors, interests, or activities.”

So, the main difference is any developmental history of repetitive or restrictive behaviors. This can be problematic in getting a developmental history of a teenager or adult because often time higher functioning individuals may have learned to manage the behaviors or have “socially acceptable” ones like Bible-study, or rigid beliefs about morality, or cooking, or music composition. Not every restrictive interest is “autism stereotypical” as in interest in small parts, vehicles, rocks, or ceiling fans. Often times parents new to the process are not really sure what falls under that category because all kids as toddlers have some phase they are in- cars, Thomas the train, Elmo, fairies, racecars.  Caregivers may not always know when the pattern has crossed over into restrictive or repetitive. Some parents, when I interact with their child and they tell me their child cannot be autistic because they do not have any of those “behaviors”, react when I point out behaviors I observe but the parent calls the behavior  “quirky” or “just a phase every child has.”  So the criteria language and what that manifests can be troublesome if the clinician does not have a trained eye on the whole spectrum of autism. If they stick to literal terms as to what may be repetitive and restrictive, since parents are giving the history, those behavior may  be missed in the assessment.

Social communication and social skills are the same thing right? According to the DSM-5 yes, but according to those who work with these individuals there are nuances in one’s ability to communicate and one’s ability to know the right thing to do or say in the appropriate social situations. Often times those who were previously called Asperger’s tend to be able to hold wonderful conversations (if about their special interests ) and thus appear completely neuro-typical, but may not know how to interact with a group of people at the church banquet or work Christmas party.

Around the world the term Asperger’s is still being used and scientific studies abound that  indicate it should still part of the spectrum as a distinctive sub-type. A study in the BMC Medicine journal which compared EEGs of neuro typical and Asperger Syndrome children found that “all the children with autism- including those with Asperger’s- showed weaker connections in language associated regions of the brain’s left hemisphere.  However, the researchers found distinctively strong activity in other areas of the brain among those diagnosed with Asperger’s Syndrome.” The study showed these distinctively strong areas were not present in the normally developing child’s brain.

As a clinician and mother working in this field, I stay attentive to the research being done in other parts of the world concerning ASD/Asperger’s Syndrome. When I speak, although it is now “clinically incorrect” in the USA, in my humble opinion it is more accurate to still use the distinction of Asperger’s Syndrome.  Organizations such as Emory Autism Center and Marcus Autism Center and TEACCH still use the term as well.

This article was certainly not meant to answer this heated debate, but to get one to look beyond the language of the DSM-5 as want to provide excellent care. I hope to have raised more questions than answers ad challenge us to look for truth wherever truth may be found and not be limited to one manual.

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