What Happened to Asperger’s?

BY  |  Wednesday, May 30, 2012 12:00pm  |  COMMENTS (0)

As with any revision to American Psychiatric Association’s (APA) Diagnostic Manual (DSM), the release of the DSM-5 in 2013 is not without controversy. Parents of children diagnosed with Asperger’s Syndrome are especially concerned because that diagnosis is being eliminated and replaced by Autism Spectrum Disorder (ASD).  Under the new diagnostic criteria, children currently meeting the criteria for Asperger’s would have to meet 5 of 7 symptoms compared to the 6 or 12 in the current version. The DSM-5 introduces a guideline for rating the severity of symptoms. People who now qualify for the diagnosis of Asperger’s will be rated as mild compared to the more severe cases on the spectrum where functioning can be very impaired due to a significant loss of social and communication functioning.

The chief concern regarding the proposed change is that  “some psychiatrists say the new rules are too strict: they worry some high-functioning autistic people, such as those now diagnosed with Asperger’s, may not meet the criteria and may miss out on educational and medical services as a result,” (Jabr, 2012). This concern was initially raised by the results of a Yale study, (McParland,  Reichow, & Volkmar, 2012)

However, the methods and interpretation of the Yale study were refuted by a more recent study by Gever (2012,) which stated, “If anything, the DSM-5 criteria are more sensitive, not less, for picking up the key features of autism spectrum disorder — particularly the integration of gestures and verbal communication.”

Another point of criticism in the Yale study to which Dr. Susan Swedo objected was DSM-5′s treatment of social behavior in comparison with DSM-IV. The relevant DSM-IV checklist item is “failure to develop peer relationships and abnormal social play.” In DSM-5, this would be replaced with a dimension scale of “difficulties adjusting behavior to suit different social contexts.” Swedo said this language would not only be sensitive for autism spectrum but would also exclude many children whose primary diagnosis is ADHD, who can also have trouble with peers and social play, (Gever, 2012).

Thus, recent studies suggest that the change in criteria is actually moving in the right direction toward better describing and understanding disorders, rather than excluding people from treatment.  Students with even mild forms of ASD can have significant difficulty functioning in the mainstream school without support and counseling.Mild is just meant to describe where it lies on the spectrum but is not meant to minimize how serious the implications can be.  Ask anyone who suffers from depression or anxiety – even a “mild” degree can have serious effects on daily functioning.

At Sage Day, the private special education school where I am the Clinical Director, our work with Asperger’s students has met with great success. The language being proposed is in line with how people often view and describe individuals with Asperger’s.  Someone may say, “this student is on the spectrum.”  When questioned further about the symptoms, the conversation may end up, “sounds like this student is on the spectrum, but mild . . . sounds like Asperger’s.” This rating system is something that mental health professionals have been doing for years as a way to better explain and understand the student, so it seems like a logical progression.

What has been done away with is the Not Otherwise Specified (NOS) which has been used as a catch all within a category when distinct diagnosis can’t be met. When students on the spectrum haven’t met all the criteria for Asperger’s but have some traits, they were often just diagnosed with Pervasive Developmental Disorder (PDD- NOS). Many professionals have had difficulty distinguishing between students diagnosed with Asperger’s and PDD NOS – the characteristics exhibited by these students can be extremely similar, if not the same.  The NOS diagnosis is available for use in other diagnostic categories and is a way to give a diagnosis when you know there is something wrong, but not quite sure it meets the criteria for a distinct diagnosis. It seems to me that the new rating system will address this issue to the benefit of the student/patient.  Now the PDD NOS student and Asperger’s will both be seen on the mild side of Autistic Spectrum.

Since many of the previously distinct disorders have so many common symptoms, the severity scale is an attempt to better explain the student/patient.   It is not meant to minimize a problem, but may better guide treatment, which is the ultimate goal of an accurate diagnosis.

Regardless of the psychiatric diagnosis,  it is only part of the treatment. One has to look at the person as a whole and not just a diagnosis. When someone has told me that a student has Asperger’s, I know that there are certain traits I could expect to see, but I also want to know, “Who is the person with the diagnosis. . .  What are her interests . . . How does he feel about himself . . . . What are her goals?” Answering those questions gets to the depth of intervention beyond knowing just what the symptoms and challenges are. We have seen many of our graduates go on to live scholarly, social and meaningful lives with relationships that have taken them beyond where they ever expected when they were originally given their diagnosis.   For some, the diagnosis of Asperger’s has given them an understanding of their differences, while some others have taken it as an indication of a life with severe limitations.  It is sad when a diagnosis wrongly takes away dreams. The students we have seen over the years are a testimony to how hard work, understanding and growth can lead to a fulfilling life regardless of the starting point.

The first DSM was a starting point to naming the symptoms being seen in hospitals and treatment rooms. Since that first manual, we have made great progress in understanding people and there is no doubt that this will continue and that the DSM-5 will be looked at as another step along the way in our evolution of better addressing psychiatric problems.

John Reilly, MSW, LCSW, is the Clinical Director of Sage Day Schools, private, accredited, therapeutic schools in Northern, New Jersey for students grades 5 through 12 who need a different learning environment.
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  • Gever, J. (2012, May). Autism criteria critics blasted by DSM-5 leader.  MedPage Today.  Retrieved from http://www.medpagetoday.com/MeetingCoverage/APA/32578
  • Jabr, F. (2012, May).  Psychiatry’s “Bible” gets an overhaul.
    Scientific American Mind
    .  p. 5.
  • McParland, J., Reichow, B., Volkmar, F., (2012) Sensitivity and specificity of proposed DSM-5 diagnostic criteria for autism spectrum disorder.    Journal of American Academy of Child Adolescent Psychiatry, Apr 51(4): 368-83.

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