Asperger’s Association of New England Position Paper on the DSM-5

A draft of the Diagnostic Statistic Manual V (DSM-5), posted in February 2010 on the American Psychiatric Association’s (APA) DSM-5 web site for public comment, proposes eliminating the diagnosis of “Asperger’s Disorder,” subsuming it without further identification, along with Autistic Disorder, Childhood Disintegrative Disorder (CDD), and PDD-NOS, into a broad new diagnosis of “Autism Spectrum Disorder” (ASD).

The draft language proposes diagnostic criteria for ASD be organized into two domains:
1. clinically significant, persistent deficits in social communication and interactions, and
2. restricted interests and/or repetitive patterns of behavior.
It stipulates that symptoms must be present in early childhood.
It proposes establishing scales for the measurement and characterization of “severity” of symptoms in the two domains, but the measurement criteria for these scales have yet to be published.

We consider these changes problematic on several grounds. First, the proposed language is likely to result in misdiagnosis or underdiagnosis for people with Asperger’s Disorder. Prior to the publication of the DSM IV in 1994, there was no Asperger Syndrome (AS) diagnosis in the United States, and people either went undiagnosed or were diagnosed inaccurately. Since 1994, hundreds of thousands of children, teens, and adults have received the Asperger’s Disorder or Asperger Syndrome (AS) diagnosis, and it has become an essential tool for them, their families, educators, clinicians, and researchers. The AS diagnostic criteria, although at times admittedly ambiguous, has created a recognizable profile enabling people to identify (in themselves or in their family members, students, clients, or patients) a distinct range of strengths and challenges, which has led patients to seek professional help and clinicians to provide a clinically useful diagnosis for patients. This diagnosis has also helped parents, educators, and clinicians determine what interventions or accommodations are most useful.

Second, the term “Asperger’s” has meaning to many individuals with AS. For people who have struggled to find their place, it seems counterproductive to completely eliminate a nomenclature that helps them identify their issues and needs. There are also many service providers, teachers, parents and siblings who have come to understand what AS means, and what daily supports are necessary for an individual with AS to succeed in the family, at school, at work, and in the broader community. Parents, educators, clinicians, researchers and adults with AS have formed a strong, mutually supportive community, united by the concept of AS. Taking AS out of the DSM would fragment this community, with unfortunate results for everyone involved. Further, the AS label and formulations have provided the public with access to an understanding of this population’s journey.

Third, the criteria for diagnosis in the proposed ASD definition do not include the complete cluster of symptoms found in individuals diagnosed with AS. Common associated features of AS include sensory atypicalities, anxiety, executive function problems, and right hemisphere learning difficulties. Including a description of these associated features in DSM-5 would facilitate proper diagnosis. Mitigation in these areas is often an essential element of services, support, and accommodation for people with AS.

Fourth, the detailed definitions of the scales associated with the diagnostic criteria domains have not yet been released. The time period for public comment ends on April 20, 2010, resulting in inadequate time for public comments and meaningful dialogue about these issues. We would like to see the DSM-5 committee define severity in terms that are clear and unambiguous and avoid descriptive words such as “mild”, since no one in the proposed ASD umbrella has a mild disorder.

Looking ahead to the 2013 publication of the DSM-5, we want to move forward, preserving the progress made since 1994, rather than regressing to the counterproductive situation that existed prior to DSM-IV. Whatever changes are made in the diagnostic categories, it is essential to ensure that any person who falls into the existing Asperger’s Disorder definition will fit within the new ASD nomenclature in the DSM-5. Individuals with AS need to continue to be accurately diagnosed, and they must continue to receive the support and accommodations they need, without interruption of services.

Therefore we strongly recommend:

1. That the term “Asperger Syndrome” be retained in the DSM-5, to designate a category or subset of the new ASD diagnosis into which individuals currently diagnosable with AS fall because the AS nomenclature (i) has enabled so many individuals to be properly diagnosed and receive appropriate accommodations and support, and (ii) has provided a common, well-understood terminology for those diagnosed with AS and their support community as well as allowing the public to better understand this population’s journey;

2. That DSM-5 reference common associated features, such as sensory atypicalities, anxiety, executive function problems, and right hemisphere learning difficulties.

3. That the time period for public comment on the severity scales be extended for a reasonable time after they are released for public review, and that the scales be clear and unambiguous.

Recommendations for Action

We welcome your thoughts on the DSM-5 proposal and recommend that you make your voice heard by contacting the DSM-5 committee.
Let the DSM-5 committee know what you think about the proposed changes, and how the new definition would impact you or your family member. You can contact the DSM-5 committee by going to the APA website. Register a username and password for yourself (no cost), and submit your comments.
Include brief, specific examples from your own experience in your comments.
If you agree with our thoughts outlined above, please feel free incorporate them into your comments.
Please share your comments with AANE.

Thank You!

AANE Staff & Board

AANE DSM-5 Committee
- Dr. Dan Rosenn
- Dr. Scott McLeod
- Dorothy Lucci
- Phil Schwarz
Leo Sarkisian –ARC of Massachusetts
Nick Dubin, Ph.D.
Liane Holliday Willey, EdD
Dan Coulter
Patricia R. Schissel, LMSW, President, Asperger Syndrome and High Functioning Autism Association (AHA) Inc.
Lori S. Shery, President ASPEN Asperger Syndrome Education Network
Brenda Smith-Myles
Susan J. Moreno, OASIS @ MAAP President

A Summary of a workshop entitled Asperger’s Disorder and the DSM-5 presented at the AANE Asperger Syndrome Connections Conference on 9/24/1

By Bruce Sabian, M.A., LMHC and Scott McLeod, Ph.D.

On Friday, 9/24, we held a workshop addressing the issues surrounding the proposed changes to the Asperger’s Disorder diagnosis in the DSM-5. The workshop was designed to be an opportunity for the AS community to contribute to the process and react to the DSM-5 proposal. The general question we raised was: “What information would you like the APA to know or consider when writing the final set of criteria for Asperger Syndrome in the DSM-5?”

Prior to the discussion segment of the workshop, we presented information about specific changes to the diagnosis and rationales for those changes put forth by the APA. The APA cites research that suggests that while the existing criteria are sufficient to distinguish people with one of the PDD’s (Asperger’s Disorder (AS), Autistic Disorder, and Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS)) from those with typical development, they have proven to be insufficient for differentiating diagnoses within the autism spectrum. An examination of the criteria for AS and High Functioning Autism (HFA) in the DSM-IV shows an exact overlap of 6 out of 12 criteria for AS and 6 out of 15 for Autistic Disorder. Some of the other criteria, while not exact matches from one diagnosis to the other, do little to help differentiate one from the other. The APA has proposed two major changes: 1) Subsuming the diagnoses of Asperger’s Disorder, Autistic Disorder, and PDD-NOS into one with the title of Autism Spectrum Disorder. This diagnosis would be broken down by severity rather than by subtype. 2) Reducing the number of symptom domains from the current three (social deficits, communication deficits, and fixated interests and repetitive behaviors) to two (social communication deficits, and fixated interests and repetitive behaviors).

After outlining the proposed changes, we went on to discuss the relative merits that these changes entail. We posited that to come to any conclusions about these merits, the primary question that has to be addressed is “Why diagnose?” The answer to that question was found to vary depending upon who is answering the question. Of the many constituent groups or consumers affected by the proposed changes, the ones we discussed were researchers/psychiatrists, clinicians, advocacy groups and people on the spectrum. There are others as well.

We found that, for reasons outlined above, most researchers and psychiatrists have been in favor of the proposed changes. The fact that the existing diagnoses have often been used interchangeably has made it difficult to carry on effective and reliable research which, in turn, has limited our ability to come to confident conclusions about the specific nature and relative efficacy of treatments related to these diagnoses. The clarity of this position is exemplified by the following statement by Catherine Lord, a member of the Neurodevelopmental Work Group, the committee responsible for formulating the criteria for the DSM-5: “Asperger’s means a lot of different things to different people. It’s confusing and not terribly useful.”

Many clinicians, we included, are opposed to the proposed changes. Many people providing direct clinical services to the AS community feel that, while it may be difficult to tease apart consistent differences between the separate diagnoses, it is not impossible. As we were speaking to various clinicians about their impressions of the APA’s proposals, their responses seemed reminiscent of the sentiments expressed by Supreme Court Justice Potter Stewart in his opinion on the landmark obscenity trial (Jacobellis v. Ohio, 1964). Justice Stewart wrote this regarding attempts to define obscenity but it applies well to clinicians’ attempts to distinguish between AS, HFA, and PDD-NOS. He wrote “I shall not today attempt further to define the kinds of material I understand to be embraced within that shorthand description and perhaps I could never succeed in intelligibly doing so. But I know it when I see it.” Much of the overlap between the diagnoses exists because of the way the criteria in the DSM-IV were written by some of the same researchers who are now proposing the changes. Additionally, many clinicians are concerned about the potential damage to the AS community that could result from these changes. The current diagnostic system has been present during a period of rapid growth to a flourishing community of people who are not known for their ability to establish community and form connections. The proposed changes represent a potential threat to those connections and to the sense of personal identity that the current system has helped many individuals to establish.

The last of the constituent groups examined was the advocacy community and the collective group of people on the spectrum. Among this group, we found the reactions to the proposed changes to be widely divergent. Groups and individuals in favor of the changes tended to cite the likelihood of greater coverage of services by insurance providers under the proposed system as well as the belief that combining many diagnoses into one would help to make the AS/Autism community more unified and cohesive. Those opposed to the changes focused on some of the same issues that clinicians have cited as the basis of their disapproval.

Following our presentation, there was a discussion of these issues by workshop participants. Here is a summary of the suggestions from the attendees:

The two overarching themes reflected in audience questions and comments were that, in its attempts to frame a more reliable and valid diagnosis, the APA has 1) oversimplified and homogenized what is, in fact, a complex and heterogeneous syndrome and 2) has also missed or ignored the contexts in which the diagnosis exists.

Specific concerns were:

In its initial proposals for the new diagnosis, the APA has not considered issues in the sensory domain, organizational skills and other aspects of executive functioning, or language development other than concrete, formal language.
Assigning descriptors such as high severity, moderate severity, or low severity, creates a model of Autism Spectrum Disorders that is more linear and one dimensional than the one that is perceived by clinicians and those on the spectrum as representing the actual nature of the syndrome.
The description of the syndrome found in either DSM description does not do justice to the numerous “differentials” or categories of impairment and the differences in their quantity and quality across individuals with the same diagnosis. Examples included pragmatics, anxiety, organizational skills, as well as overall functioning across occupational, social, and academic domains. Parenthetically, both presenters felt that, while these represent valid concerns, there needs to be a balance between capturing the complexities and subtleties of the disorders, on one hand, with a need for maintaining some degree of simplicity as a final product.
There was a sense that when one’s level of functioning is described as being “high,” that, there is often an inaccurate representation of that person’s day to day experience. The label “high functioning” can imply that a condition is somehow easier to remedy when that, in fact, often is not the case.
In the proposed model, there is an implication that if a person with Autism Spectrum Disorder develops 1 or 2 friendships with others on the spectrum, then that person would no longer meet criteria in the social communication category.
There was a very clear sense that the proposed changes address this issue only within the context of the psychiatric and research communities when, in fact, people from many other realms will be affected. In producing a final product, the APA must consider the voices from those other realms.

Both presenters found the group discussion to be a fascinating and lively examination of the many issues involved in this topic. Despite the fact that there have been such divergent and intense reactions to the proposed changes, workshop participants were able to exchange ideas with a feeling of respect for this diversity of opinion.

Bruce Sabian, M.A., LMHC is the Director of Academy MetroWest, a children’s group therapy service in Natick that utilizes cooperative physical activity as a means of helping children enhance social skills and self-image.

Scott McLeod, Ph.D., is the Executive Director of MGH/YouthCare, a therapeutically-based program that focuses on helping children with Asperger’s syndrome, non-verbal learning disabilities, high functioning autism and related challenges to develop social skills.