As for changed diagnoses resulting in changed services, there is some good news: There may not be any service changes at all for your current patients. The DSM-5 Neurodevelopmental Disorders Work Group states that these changes will not affect children with a current diagnosis; no children will lose their current diagnoses on the spectrum. For services based on diagnosis, some children may not qualify in the future, but when services are based on severity children will likely qualify based on the new levels.
But what about the children yet to be diagnosed? One goal for reorganization in the DSM-5 was to improve specificity, but sensitivity may suffer, particularly for children previously called PDD NOS. Huerta et al. studied this using a cross classification of children already diagnosed to see which ones might be excluded under DSM-5 (Am. J. Psychiatry 2012;169:1056-64). She found that the DSM-5 criteria identified 91% of children with clinical DSM-IV PDD diagnoses, perhaps the most vulnerable to exclusion. The sensitivity of the DSM-5 criteria was high, even in girls and children younger than 4 years. This would be good news for retaining services.
But other studies on previously diagnosed cases do not agree. These studies using various existing samples predict that least 12% and potentially more than 40% of children who would have been classified as ASD under DSM-IV will not be under DSM-5, especially the most high functioning. Failure to meet criteria in the social communication domain was the most common reason for exclusion (39%) in one study. In addition, ASD prevalence is predicted to drop from 11.3% to 10.0% using the DSM-5 criteria (JAMA Psychiatry 2014 [doi: 10.1001/jamapsychiatry.2013.3893]). DSM-5 changes also will make it difficult for ongoing longitudinal research studies to compare with previous data.
Because the DSM-5 diagnosis of ASD is here to stay, what can you do to ease the transition? First, be able to explain the changes as described here. Then, implement or look for all aspects of the descriptors about comorbidity and severity when you are monitoring services being provided or advocating for more. Take special care that social communication disorder is diagnosed correctly and that both language and social skills are addressed. And encourage parents to join the national registries such as Autism Speaks and the Autism Speaks Autism Treatment Network and the Interactive Autism Network, which will help current and future research as DSM-5 efficacy is examined and even more changes made.
Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She has no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to Frontline Medical Communications. E-mail her at pdnews@frontlinemedcom.com.