Autism Speaks Voices Concerns to DSM-5 Work Group
from Autism Speaks Chief Science Officer
11 June 2012
As many of you are aware, Autism Speaks is playing a proactive role in monitoring the effect of the planned revisions to the definition of autism spectrum disorder (ASD) in the upcoming 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), scheduled for publication in spring 2013.
We have recently submitted our recommendations to the DSM-5 Neurodevelopmental Disorders Work Group for their consideration as they finalize the revisions to the diagnostic criteria. The letter we submitted is reproduced below. As always, we will continue to update you as future developments take place.
(Please see all our DSM-5 news and updates here.)
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Dear members of the DSM-5 Neurodevelopmental Disorders Work Group,
Autism Speaks is the world’s leading autism science and advocacy organization, representing hundreds of thousands of individuals and families affected by autism. We recognize the need for diagnostic criteria for autism spectrum disorders (ASD) that reflect our current scientific understanding and progress and define the wide range of symptom expression associated with this disorder. In the end, however, these are criteria about people who have symptoms that can be helped considerably by services aimed at improving their ability to function in the world. Thus, any revision of the diagnostic criteria must be made with great care.
There is great concern by many members of the autism community, including parents and individuals with ASD, that some individuals with ASD might “lose” their diagnosis based on the revised criteria. Another concern is the impact of changes in diagnostic criteria on prevalence estimates and the ability to have accurate estimates of changes in prevalence over time. A number of published studies have reported that a percentage (ranging from 13-39%) of individuals, mostly with higher IQs and less severe symptoms, would no longer meet the criteria for ASD under the new DSM-5 guidelines. For the most part, these studies have used a retrospective design, with reexamination and review of charts from different sources. Field trials, which involve face to face evaluation, have not demonstrated such a disparity. Although the field trials are encouraging, the sample size used for the field trials is relatively small (N = 83 children with ASD) and only involved pediatric populations. Additional prospective research based on larger samples, diverse ethnic backgrounds, and a wider age range is clearly needed to provide more definitive answers. In this letter, we raise several issues which we respectfully ask the committee to consider:
1. Need for additional prospective data comparing DSM-IV and DSM-5 criteria. Additional prospective data based on larger samples, diverse ethnic backgrounds, and wider age ranges are clearly needed to provide more definitive answers. We have very little information about the impact of the new DSM-5 criteria on diagnosis of very young children, adults, and individuals with different ethnic backgrounds. The current criteria should be considered provisional and open for future revision until more definitive research is conducted.
2. Need for clear guidance re: retention of previous ASD diagnosis of symptoms. We request that the committee make it clear that it is the opinion of the American Psychiatric Association (APA) and the Neurodevelopmental Disorders Work Group that all individuals who currently have a diagnosis of ASD (including all subgroups of DSM-IV pervasive developmental disorders) should retain their diagnosis for purposes of qualifying for needed clinical and educational services.
3. Need for clear guidance re: continued use of the diagnosis of Asperger syndrome. The committee has noted in previous communications that people with a current diagnosis of Asperger syndrome will be able to have that diagnosis indicated in their medical/educational record as part of the list of “specifiers.” This will allow persons to retain their identity as persons with Asperger syndrome and facilitate continued research on such individuals. We request that the APA and the Neurodevelopmental Disorders Work Group make it clear that this option is possible for people with Asperger syndrome.
4. Need for more information for clinicians on use of specifiers. The clinical specifiers have enormous potential to be used to describe specific subtypes of ASD, including those with limited language function and intellectual disability, known etiologies, history of regression, and medical co-morbidities, such as seizures and GI disorders. We urge the committee to provide more specific instructions for clinicians on how specifiers should be defined and recorded. Without additional guidance, clinicians may not use these important specifiers that have clinical implications for persons with ASD.
5. Concern that the criteria are overly strict and may exclude those with an existing diagnosis. Multiple studies have reported the excellent construct validity of using a two “factor” model for autism symptoms, rather than the DSM-IV three “factor” model. However, we remain concerned that the requirement of three symptoms in the social communication category and two symptoms in the restricted repetitive behavior category may be overly strict and result in exclusion of persons with ASD. Studies in which specificity and sensitivity were evaluated indicate that relaxing the number of observed symptoms in either category has minimal effects on specificity while increasing sensitivity. For very young children, in particular, the requirement for two symptoms in the restricted repetitive behavior domain may be problematic. We request that the committee consider relaxing the criteria. We recommend that these criteria be considered provisional until more data has been collected to examine their impact on diagnosis.
6. Need for monitoring of the impact of the DSM-5 criteria in real world settings. As described above, there is a clear need for more information about the way that the DSM-5 will affect people’s lives in real world settings. We request that the committee recommend ways in which information regarding the impact of the DSM-5 on diagnosis and access to services can be broadly tracked. The ultimate reason for diagnostic criteria is to improve the lives of people with ASD. It is crucial that the impact of the proposed changes be closely monitored and assessed.
On behalf of people affected by autism and their families, we urge you to consider these issues in your deliberations as you finalize the revised criteria for diagnosis of autism spectrum disorder.
Geraldine Dawson, Ph.D.
Chief Science Officer, Autism Speaks