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ASAN Talking Points on DSM-5

The final public commenting period is now open for the upcoming fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual, which provides the diagnostic criteria for many conditions, including developmental disabilities. The proposed changes include a revised definition of autism that will combine several existing diagnostic categories into one unified autism spectrum category. Visit the DSM-5 public comment announcement page on the APA website to learn more about the proposed revisions to the manual and how to submit your comments on them. Comments will be accepted through June 15, 2012. To comment, you need to register on the DSM-5 web site, login and then navigate to the ASD draft criteria page to submit your comments.

Earlier this year, ASAN and the Autism Society of America issued a joint statement discussing the proposed changes. Many people in our community have expressed concern about ensuring that the unified definition of autism remains broad enough to include anyone who would have received a diagnosis under the old criteria. We view community involvement and representation as a vital part of the process of developing meaningful criteria that reflect our needs. As such, ASAN encourages members of our community, along with allies, to submit comments on the proposed revisions to the definition of autism in the DSM-5. Here are some ideas to consider including in your public comment:

  • APA should revise the requirement in the ASD draft criteria’s social communication domain (A) that an individual meet 3 of 3 listed criteria. This sets an overly restrictive standard and will likely lead to greater challenges in accessing diagnosis for adults, racial and ethnic minorities, women and girls and other under-represented groups. Independent analysis of the draft criteria have confirmed the overly restrictive nature of this requirement (see Frazier, et.al, among others). APA should revise this requirement to require only 2 of 3 criteria to be met, either shifting this requirement across the lifespan or introducing the greater flexibility specifically for adults in recognition of the greater difficulties in identification which exist for the Autistic adult community.
  • APA should clearly communicate that individuals should be assessed for diagnosis without regards to any mitigating measures, such as learned behavior or other adaptive coping mechanisms, they may have developed to help navigate the world. This is consistent with the way in which the Americans with Disabilities Act is interpreted according to the recent ADA Amendments Act of 2008, which worked to ensure that people with less visible disabilities could retain coverage under the ADA. APA should consider revising part (C) of the draft criteria to reflect this. Currently, (C) acknowledges that characteristics of ASD may not be noticeable until later in life due to greater social demands in adolescence, but does not yet take note of the fact that many Autistic adults utilize adaptive coping mechanisms which may make it more difficult for them to access diagnosis, even as we are still substantially impacted by being on the autism spectrum and would benefit from the services, self-understanding and accommodations diagnosis provides.
  • APA should consider linking the diagnosis of Social Communication Disorder under ASD, helping to address both concerns that individuals on the autism spectrum may be inappropriately placed within the SCD diagnosis and the benefits of greater linkages of diagnoses in research and practice. There are multiple structures which could accomplish this goal, ranging from classifying SCD as a type of ASD-Not Otherwise Specified to describing SCD as a sub-type of ASD utilizing a similar structure to that which has been applied within the ADHD diagnosis.
  • APA should proceed with the development of a unified, single ASD diagnosis, reflecting the reality that the application of the various ASD diagnosis (Autistic Disorder, PDD-NOS and Asperger’s) is inconsistent and often utilized as a means of denying access to appropriate services. However, in doing so, APA should act with caution to ensure that all individuals covered under the DSM-IV diagnoses will retain coverage in the revised unified diagnosis.
  • APA should consider incorporating motor and movement issues within domain (B) in recognition of the growing body of research which finds these issues as common across ASD.
  • APA should clarify and expand upon its use of examples, while making clear that such lists of examples are non-exhaustive and that an individual not possessing the examples APA utilizes should not disqualify them from access to diagnosis. APA should consider providing examples specific to adults and adolescents, to better acknowledge that the characteristics of ASD differ across the lifespan. APA should also consider providing more specific examples on varying presentations for women and girls and racial and ethnic minorities.

We urge community members to move swiftly to comment on these issues as quickly as possible. ASAN will be releasing a more comprehensive policy brief on the DSM-5 draft criteria and recommended edits to enhance the quality and accessibility of diagnosis later this month. In the interim, we offer these talking points as a resource to help our community prepare their comments.

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