DSM-5 Action Alert
Asperger's Associationof New England
AANE's response to the APA draft proposal for changes to the DSM-5 which excludes Asperger Syndrome as a diagnostic criteria.
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).
1) The draft language proposes diagnostic criteria for ASD be organized into two domains:
a) clinically significant, persistent deficits in social communication and interactions, and
b) restricted interests and/or repetitive patterns of behavior.
2) It stipulates that symptoms must be present in early childhood.
3) 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.
1) The draft language proposes diagnostic criteria for ASD be organized into two domains:
a) clinically significant, persistent deficits in social communication and interactions, and
b) restricted interests and/or repetitive patterns of behavior.
2) It stipulates that symptoms must be present in early childhood.
3) 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 detaileddefinitions 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
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 detaileddefinitions 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!
Prepared by the AANE DSM-5 Committee members: Nancy Schwartz, Phil Schwarz, Dr. Daniel Rosenn, Dr. Scott Mcleod, Jody Acford, Dot Lucci, & Dania Jekel with Lucy Berrington, & Stephanie Loo. The Asperger's Association of New England, April 5, 2010
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