In 2013, the American Psychiatric Association (APA) will release the Diagnostic and Statistical Manual of Mental Disorders (DSM) Version 5. The DSM is a manual that organizes behaviors and symptoms into diagnostic groups for the purposes of clinical diagnosis and recommended treatment. Over time, the DSM has changed radically: The concept of an "autism spectrum" is relatively recent, and major changes to criteria for autism diagnoses will change what we presently think of as the "autism world." Most significant for people in the autism community will be the removal of two existing autism spectrum diagnoses - PDD-NOS and Asperger syndrome - from the manual.
To find out more about the proposed changes, I contacted the APA and posed a number of questions. After a few weeks, I received responses, most written by Dr. Bryan King of the Neurodevelopmental Disorders workgroup. This set of questions and answers relates specifically to diagnosis and treatment of people with symptoms we presently consider to be part of the autism spectrum.
I could easily imagine a child with a ASD diagnosis based on today's criteria winding up with a collection of multiple diagnoses under the new criteria. Is this accurate??
Not exactly. Repetitive behaviors and perseverations are features of autism. A child who does not have these symptoms or otherwise does not meet criteria for ASD would not be given the diagnosis. It is likely that the presence of both social communication and stereotyped movement disorders (along with the history of late language emergence) would give someone the ASD diagnosis, and it is unlikely that criteria would allow for the diagnoses of both intellectual disability and late language emergence or learning disorders. But it is indeed possible that some people who are currently merely given the diagnosis of autism would appropriately also be given diagnoses relating to specific learning difficulties, etc., as a way of better capturing their individual differences and needs. Indeed, ASD is highly comorbid with numerous other diagnoses, including intellectual disability (50%+), learning disabilities (30-50%), ADHD (excluded in DSM-IV, so prevalence is unknown but recognized as being clinically high), OCD (20-30%), and anxiety disorders (“majority” of adults).
Assuming that a child has essentially the same symptoms that are now classified as PDD-NOS, ASD or PDD, do you anticipate that treatments will vary dramatically with the DSM V? That is - will ABA, developmental therapies, speech, OT, PT and social skills therapies remain the options of choice? Or do anticipate big treatment changes as a result of changes to the criteria?
It is unlikely that treatments will vary dramatically as a result of the DSM 5. However, the current categorical (PDD-NOS, AD, PDD) approach actually gets in the way of the use of some treatments that may become more appropriately and widely used for persons with ASD. For example, an FDA approved treatment for a condition associated with Autistic Disorder is technically not approved or indicated for PDD unless that condition was specifically included in the labeling. We do not anticipate big treatment changes as a result of changes to the criteria.
Should the autism community anticipate a big shake-up in terms of services and therapies available, based on new diagnostic categories? What should we do to prepare?
There should not be a shake up in terms of services and therapies. None of us has control over what third parties choose to do regarding service qualification or delivery, and it should be emphasized that people and their needs aren't changing -- just the way we capture their diagnoses. In the past, when DSM has been revised, the new diagnostic criteria are attached to the closest approximation of the previous disorder and its International Classification of Diseases (ICD) diagnostic code number. Existing evidence for treatment efficacy for these conditions continues to guide treatment decisions until new evidence emerges on treatment response for the newly defined disorders.
What is your "official" perspective on the physical issues related to ASD (seizure disorders, sleep issues, higher incidence of GI problems, etc.)? Do they fit into the diagnosis, or are they a whole separate issue to be addressed by a physician? We are not able to provide “official” perspectives on such issues; rather, we can only share what our work group experts believe to be, based on the science and clinical information, the most accurate and informative diagnostic picture at this time. In that vein, we believe that it is better to highlight the co-occurrence of physical problems with separate diagnoses rather than for them to disappear into the ASD diagnosis. Because not everyone with autism has sleep issues, or GI issues, or epilepsy, it is important to call those out when they occur with a specific diagnosis rather than to suggest, for example, that epilepsy is just part of autism.
