Why the decision to eliminate Asperger’s Disorder was absurd…

photoIn Part Six of our blog series…Dissecting the DSM-5…What it Means for Kids and Families we’ll look at the decision to exclude the diagnosis of Asperger’s Disorder from the most recent update of the diagnostic criteria.

Every once in a while, my esteemed and learned colleagues in academia are prone to overlook realities that are patently obvious to those of us who are mere mortals. That appears to have been the case when the committee responsible for neurodevelopmental disorders revised the diagnostic criteria for autism spectrum disorders.

From Sesame Street…

One of These Things (Is Not Like The Others)

One Of These Things (Is Not Like The Others)
One of these things is not like the others,
One of these things just doesn’t belong,
Can you tell which thing is not like the others
By the time I finish my song?

Did you guess which thing was not like the others?
Did you guess which thing just doesn’t belong?
If you guessed this one is not like the others,
Then you’re absolutely…right!

From a clinician’s standpoint, kids with Asperger’s are VERY different from kids with “classic” autism. Kids with Asperger’s have the intelligence and language skills to very effectively communicate their thoughts and perceptions. They also have a far greater capacity for self-awareness of their social deficits…and are far more amenable to treatment interventions to ameliorate their weaknesses in social situations. Most can be effectively served in mainstream or gifted classrooms. They’re so different that the vast preponderance of kids with traditional autism in our community receiving medical intervention are seen by developmental pediatricians and pediatric neurologists, not child psychiatrists.

Kids with Asperger’s and kids with autism do have a common trait…restricted, repetitive patterns of behavior, interests and activities. They also have in common a diminished capacity for social communication…although there are generally orders of magnitude difference in the capacity for social communication of a child with Asperger’s when compared to a child with more traditional autism.

I could make an argument that the kids I treat with Asperger’s Disorder have more in common with my patients with OCD than they do with kids with classic autism.

Last year, I wrote about the purpose for a system of diagnosis when the controversy about revisions to the criteria for autism began to bubble to the surface. As a reminder, these are the three primary reasons why a diagnostic classification system is necessary…

  • Common criteria help ensure that our diagnoses are both accurate and consistent.
  • Common criteria that are consistent and reliable are essential for meaningful research.
  • The process of establishing a clinical diagnosis and case formulation helps us to organize our thoughts about how to best treat our patients.

In Asperger’s Disorder, we have a condition that was well-defined with widely known and accepted diagnostic criteria, as well as a relatively homogeneous group for research within the autism spectrum. Most importantly, the Asperger’s paradigm leads to very different treatment approaches than those employed with children with classic autism.

It’s interesting that the APA went to great lengths, establishing new diagnostic criteria for Disruptive Mood Dysregulation Disorder to prevent kids with irritability as their predominant mood state, but made a controversial decision to lump all kids together with restricted, repetitive behavior into a single category.

The clinical presentation and treatment of persons with Asperger’s Disorder is clearly different than other autism spectrum disorders…in the context of our flawed diagnostic classification system, Asperger’s Disorder should have been retained.

Author’s note…The purpose of the Sesame Street illustration was to dramatize the differences between persons with Asperger’s Disorder and persons with other autism spectrum disorders-and illustrate why the designation of Asperger’s Disorder should have been retained in DSM-5.

Most recently updated January 25, 2014

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Square Peg Round HoleKey Ministry has assembled a helpful resource on the topic of Asperger’s Disorder and Spiritual Development. This page includes the blog series Dr. Grcevich and Mike Woods developed for Key Ministry, links to lots of helpful resources from other like-minded organizations, and Dr. Grcevich’s presentation on the topic from the 2012 Children’s Ministry Web Summit. Click here to access the page!

About Dr. G

Dr. Stephen Grcevich serves as President and Founder of Key Ministry, a non-profit organization providing free training, consultation, resources and support to help churches serve families of children with disabilities. Dr. Grcevich is a graduate of Northeastern Ohio Medical University (NEOMED), trained in General Psychiatry at the Cleveland Clinic Foundation and in Child and Adolescent Psychiatry at University Hospitals of Cleveland/Case Western Reserve University. He is a faculty member in Child and Adolescent Psychiatry at two medical schools, leads a group practice in suburban Cleveland (Family Center by the Falls), and continues to be involved in research evaluating the safety and effectiveness of medications prescribed to children for ADHD, anxiety and depression. He is a past recipient of the Exemplary Psychiatrist Award from the National Alliance on Mental Illness (NAMI). Dr. Grcevich was recently recognized by Sharecare as one of the top ten online influencers in children’s mental health. His blog for Key Ministry, www.church4everychild.org was ranked fourth among the top 100 children's ministry blogs in 2015 by Ministry to Children.
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7 Responses to Why the decision to eliminate Asperger’s Disorder was absurd…

  1. mark215 says:

    I agree with you, wholeheartedly, on the need to keep Asperger’s as a diagnosis. Have you heard reasoning as to why they did away with it? Will there be kids who will go without a diagnosis now or will they just be diagnosed with autism?

    Thanks, as always, for all you do, Brother!

    Like

  2. drgrcevich says:

    Hi Aaron,

    I haven’t seen a really good justification from the Committee. According to the APA, “individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s Disorder or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.” So, I’m not sure what was the point of the exercise.

    The reasoning for the change was, in my opinion, muddled. This is straight from the APA…

    “Using DSM-IV, patients could be diagnosed with four separate disorders: autistic disorder, Asperger’s disorder, childhood disintegrative disorder, or the catch-all diagnosis of pervasive developmental dis- order not otherwise specified. Researchers found that these separate diagnoses were not consistently applied across different clinics and treatment centers. Anyone diagnosed with one of the four pervasive developmental disorders (PDD) from DSM-IV should still meet the criteria for ASD in DSM-5 or another, more accurate DSM-5 diagnosis.”

    We have these comments from Dr. Catherine Lord (one of the committee members)…

    “Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,”

    “Asperger’s means a lot of different things to different people,” “It’s confusing and not terribly useful.”

    “A child can look like they have P.D.D.-N.O.S., then Asperger’s, then back to autism,”

    There’s also some sense that they did this to make it easier for some families to access services, since in several states kids with autism qualified for additional services from the state, while kids with Asperger’s and PDD-NOS did not.

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  3. Re “person-first language” — have you read what a person with autism writes about this importnt subject? Here’s a link to the statement of autism advocate Jim Sinclair, who himself has autism: http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/

    Like

  4. Ettina says:

    “From a clinician’s standpoint, kids with Asperger’s are VERY different from kids with “classic” autism. Kids with Asperger’s have the intelligence and language skills to very effectively communicate their thoughts and perceptions. They also have a far greater capacity for self-awareness of their social deficits…and are far more amenable to treatment interventions to ameliorate their weaknesses in social situations. Most can be effectively served in mainstream or gifted classrooms. They’re so different that the vast preponderance of kids with traditional autism in our community receiving medical intervention are seen by developmental pediatricians and pediatric neurologists, not child psychiatrists.”

    Temple Grandin has a diagnosis of classic autism. At the age of 3, she was nonverbal and extremely withdrawn. As an adult, however, she’s a skilled public speaker with markedly odd nonverbal behavior and intense interests.

    Not seeing the dramatic differences you claim to see.

    Yes, there’s a big difference between a nonverbal 10 year old in diapers and a hyperverbal socially awkward 10 year old with a gifted-level IQ. But those are the extremes – the majority of kids on the autism spectrum are not at either extreme, but are instead somewhere in the middle. To divide them into AS and autism is splitting hairs, and no one can agree where the line is drawn.

    Like

  5. Joy Spencer says:

    THANK YOU, DR. GRCEVICH!!!! Finally, a voice of reason in the psychiatric field!!! Far too many times kids with Asperger’s are NOT diagnosed properly and definitely not treated appropriately because they don’t “look” autistic (ie., referring to the generalized description often associated with “classic autism”). Schools tend to look at kids with high verbal skills as troublemakers, attention seekers, etc., not as children in need of intervention. And, the general public is even crueler!!! It is next to impossible to get the appropriate services because of their strengths while all too often ignoring their weaknesses which will prevent them from being independently successful. Thank you for not being able afraid to stand up for those in need!

    Like

  6. noclaut says:

    “NVLDers” are maybe even better examples of “aspies” than people with severe forms of AS, which is, for me, a form of classical, but atypical “kanneric” autism with earlier speech development. Most people with NLD are definately “softly autistic”. They are for me real pervasive developmental disorder.

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