The update of the DSM to the DSM-5 was met with a great deal of discussion by the autism communities. The U.S. Interagency Autism Coordinating Committee (IACC) has prepared a statement “IACC Statement Regarding Scientific, Practice and Policy Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder“. The statement can be found online and as a pdf.
The press release for the statement is below.
For Immediate Release
Wednesday, April 2, 2014Contact: Office of Autism Research Coordination/NIH
E-mail: IACCPublicInquiries@mail.nih.gov
Phone: (301) 443-6040IACC Issues Statement Regarding Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder (PDF – 115 KB)
Today, on World Autism Awareness Day 2014, the Interagency Autism Coordinating Committee (IACC) issued a statement regarding the scientific, practice, and policy implications of changes in the diagnostic criteria for Autism Spectrum Disorder (ASD) that were made in the most recent update of the Diagnostic and Statistical Manual of Mental Disorders (DSM). This link exits the Interagency Autism Coordinating Committee Web site
In 2013, DSM was revised for the release of its fifth edition, consolidating previous autism-related diagnoses together into a single “autism spectrum disorder” diagnosis defined by two groups of symptoms—social communication impairments and restricted, repetitive behaviors—while including intellectual and language disabilities as additional labels that can be added onto a primary ASD diagnosis.[1, 2] To address a variety of issues surrounding the implementation of the new criteria, the IACC assembled a planning group composed of IACC members and invited experts in the field to advise the IACC on this subject.[3] Based on the group’s findings, the IACC issued a statement, describing a range of scientific, practice, and policy implications that have arisen as a result of the changes in the DSM criteria, and providing recommendations for future research and implementation of the new criteria.
“The new criteria reflect advances in our understanding of ASD. At the same time, many in the community have raised questions about how the changes will affect people in the community,” stated Dr. Geraldine Dawson, who chaired the DSM-5 planning group. “In this report, we considered how the diagnostic changes might affect individuals and families, as well as the future of the field, and tried to anticipate needs that will arise in the research, clinical practice, and services arenas. We hope this report will help address some of the concerns that have been raised and provide valuable guidance to individuals, families and professionals.”
In the statement, the IACC acknowledged concerns about the potential for changes in the diagnostic criteria to impact access to services, urging that, “Any revision of the diagnostic criteria must be made with great care so as to not have the unintended consequence of reducing critical services aimed at improving the ability of persons with autism.” The Committee recommended research to further assess the reliability and validity of the DSM-5 ASD criteria, and to understand the potential impact of these new criteria on diagnosis, prevalence estimates, and access to services.
The IACC also identified several key practice and policy issues that will be important for the community to consider as DSM-5 is implemented in real-world settings, especially with respect to services. As the new criteria have not yet been rigorously tested in young children, adults and ethnically-diverse populations, the Committee cautioned clinicians to pay special attention to individuals with obvious ASD symptoms who narrowly missed being diagnosed with ASD according to the new criteria. In addition, the Committee strongly emphasized that, “Services should be based on need rather than diagnosis; it would not be appropriate for a child to be denied ASD-specific services because he or she does not meet full DSM-5 criteria if a qualified clinician or educator determines that the child could benefit from those services.”
With this statement and its list of recommendations for future research, practice and policy, the IACC endeavors to support implementation of DSM-5 with appropriate caution and rigor. Using these criteria to benefit people with ASD remains the primary goal, ensuring access to interventions, services and supports that will help people on the autism spectrum optimize their health and well-being, and meaningfully participate in all aspects of community life.
References
1 American Psychiatric Association. 2013. Diagnostic and Statistical Manual of Mental Health Disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Publishing.
3 Roster of the IACC DSM-5 Planning Group
DSM-5 Resources
Note: I serve as a public member to the IACC but my statements here and elsewhere are my own.
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By Matt Carey
Left Brain Right Brain 
This statement contains one of the best explanations I have seen about the problem with changing the DSM criteria. The purpose of the DSM is to make sure that people get treatment that is appropriate to their diagnosis. This statement focuses on how people are affected by the DSM change, and explains why that dimension must be taken into account.
The only part of the statement that I might quibble with is the part where it agrees that “The new criteria reflect advances in our understanding of ASD.” I am not so sure that this statement is entirely correct. The new DSM reflects some of the recent changes in the way we think about autism, but ignores others.
Research continues to accumulate, for example, that there are many subtypes of autism, and therapies that help for one subtype will show no effect on other subtypes. Some of the subtypes have relatively distinct genetic markers, which may also imply a distinct set of symptoms and therapeutic strategies. By grouping all the subtypes together, the DSM may be going in exactly the wrong direction.
One move in the right direction, of course, is the creation of “Social Communication Disorder”. It has long been obvious to parents that some children (and adults) display the social and communication difficulties related to autism, but not the restricted interests or repetitive behaviors. (I worry that this minority of individuals may receive less intensive therapy than they would if their diagnosis was “ASD”, but for all I know, the less intensive therapy may be justified.)
But the latest edition of the DSM also lists having either too intense or too mild reactions to sensations as a single behavioral criterion for ASD. This seems almost deliberately irrational to me. Parents, teachers, and therapists have long known that autistics with an exaggerated response to sensory input require a different approach than autistics with typical (or lower-than-averge) response to sensory input. Current research supports the theory that these conditions are not simply two sides of the same coin, but two different subtypes of autism, with different characteristics, different behaviors, and different sets of therapies. Grouping them together implies that they will have the same chance of improvement with similar therapy regimens, which they will not.
“Under sensitive” vs. “Over Sensitive” is just one of a number of distinctions that have long been known within the autism community. Sleep disorders, food intolerance, mood disorders, and even seizure disorders all could be said to represent subtypes of autism that are now treated as concurrent conditions.
The new DSM treats epilepsy as a concurrent condition, implying that it is unrelated to the subtype of autism. While 1-2% of children in the general population develop epilepsy, the prevalence of epilepsy in ASD is much higher. Estimates vary from 5% to 35%, but that is not the point. The point is that the best current prognosis does not come from treating epilepsy as unrelated to ASD, but as a single condition that requires a distinct therapeutic strategy, and has a distinct developmental outcome from either condition separately.
The part that jumped out at me was this one:
“As the new criteria have not yet been rigorously tested in young children, adults and ethnically-diverse populations, the Committee cautioned clinicians to pay special attention to individuals with obvious ASD symptoms who narrowly missed being diagnosed with ASD according to the new criteria. In addition, the Committee strongly emphasized that, “Services should be based on need rather than diagnosis; it would not be appropriate for a child to be denied ASD-specific services because he or she does not meet full DSM-5 criteria if a qualified clinician or educator determines that the child could benefit from those services.”
Isn’t this the same thing as saying to clinicians (in the interest of full disclosure, I’m one of them), “When someone doesn’t meet all the criteria,you should fudge it and diagnose them anyway if they come kind of close?”
I’m all for providing services to people who need it but the problem with the above reasoning is that most mental health diagnoses (ASD included) consist of traits that also exist in the “normal population” to one extent or another. If the criteria get too loose, then the diagnosis is completely meaningless.