With the publish date of the DSM-5 roughly a year away, a new community of skeptics has emerged in autism advocates and clinicians, many of whom fear a revision to the autism spectrum disorder definition may prevent ASD patients from accessing services for which advocates have long fought.
A wave of concern was set off in January when at a meeting in Reykjavik, Iceland, autism specialist and director of Yale Child Study Center, Fred R. Volkmar, M.D., referred to data in a study that showed that the new diagnostic criteria for autism being considered could exclude many patients who had previously been diagnosed.
Further, discussion has surrounded the possibility that the definition of ASD could be sharply narrowed to exclude higher-functioning patients.
What exactly the definition will be is still uncertain, according to William Ahearn, Ph.D., BCBA-D, director of research at The New England Center for Children, Inc. in Southborough, Mass.
“The intention of the change is to more properly align diagnoses with criteria,” says Ahearn, who is also president of the Association of Professional Behavior Analysts.
Adding that the changes will likely be viewed as “good and sound” as long as they align with research, Ahearn says it is “right to be concerned,” especially if you are advocating for services for an autism patient.
“I think it’s very important for there to be a good, solid consensus about what diagnostic categories are; but at the same time, many parent and advisory groups – most notably Autism Speaks – are important stakeholders and often they are not approached about their opinion” says Ahearn. “Parents and advisors worked long and hard to fight for services and to ignore them is dangerous.”
Representatives from the Autism Speaks media department referred to a Feb. 2 policy statement on the revisions to the DSM definition of ASD as its official position on the matter. The group is “concerned that planned revisions…may restrict diagnoses in ways that may deny vital medical treatment and social services to some people on the autism spectrum.”
“We have voiced our concerns and will continue to directly communicate with the DSM-5 committee to ensure that the proposed revision does not discriminate against anyone living with autism,” continues the statement. “While the committee has stated that its intent is to better capture all who meet current diagnostic criteria, we have concluded that the real-life impact to the revisions has, to date, been insufficiently evaluated.”
For all of the worry about patient eligibility to services, clinicians believe that when research changes science, criteria for diagnosing should change, too.
Marisa Petruccelli, Psy.D., is the director of the Autism Spectrum Disorders Clinic, a joint program of the National Autism Center and May Institute, both in Randolph, Mass. “At May Institute and the National Autism Center, we recommend that individuals seek treatments that are grounded in solid scientific evidence demonstrating their effectiveness,” says Petruccelli, adding that the same level of scientific rigor needs to be applied when defining psychiatric disorders.
Says Petruccelli, “The DSM provides a set of criteria we use in the field to help identify the presence of behavioral symptoms. As we acquire information from new research that is conducted, these criteria change. This is the scientific process and it is a dynamic, not a static, method. The proposed changes have scientific underpinnings and could increase the reliability of diagnoses for ASD. Such changes are anticipated to acknowledge the variability of symptomatology for children and adults along the diagnostic spectrum.”
Given the uncertainty about the proposed changes, Petruccelli says that individuals treated at the National Autism Center are concerned that their access to services may be affected. She recognizes that one unintended consequence of the revised definition could be a decrease in accessibility to treatment, and that it is “critical that all individuals with autism – no matter where they fall on the spectrum – have access to the resources necessary to meet their needs today and to realize their full potential in the future.”