A team of researchers led by psychologists at Weill Cornell Medical College are assuring parents not to worry that proposed changes to the medical criteria redefining the diagnosis of autism will leave their children excluded or deemed unfit for medical and psychiatric care.
“I know that parents worry, but I don’t believe there is any substantial reason to fear that children who need to be diagnosed with autism spectrum disorders, and provided with vital services, will not be included in the new criteria in this updated manual,” says the study’s senior investigator, Dr. Catherine Lord, director of the Center for Autism and the Developing Brain at NewYork-Presbyterian Hospital’s Westchester campus, along with its affiliated medical schools Weill Cornell Medical College and Columbia University College of Physicians and Surgeons.
The issue at hand is whether DSM-5 will “capture” the same individuals diagnosed with different forms of autism by the DSM-IV. The DSM-5 proposal redefines autism as a single category — autism spectrum disorder (ASD) — whereas DSM-IV had multiple categories and included Autism Spectrum Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS).
Dr. Lord, who is also a DeWitt Wallace Senior Scholar at Weill Cornell and an attending psychologist at NewYork-Presbyterian Hospital states that this is not the case. The study, the largest to date and extremely meticulous, finds that when relying on parent report, 91 percent of the 4,453 children in the sample currently diagnosed with a DSM-IV autism spectrum disorder would be diagnosed with ASD using DSM-V.
Many of the remaining nine percent would likely be reincluded once a clinician can offer input, says Dr. Lord, who is also a member of the American Psychiatric Association’s DSM-5 Neurodevelopmental Disorders Work Group.
Dr. Joshua Weinstein, Founder & CEO of ICare4Autism stated in his article in the Jewish Press, “Parents are justifiably concerned that any tightening of the Autistic Spectrum diagnosis will threaten their children’s eligibility for vital services. The Global and Regional Asperger Syndrome Partnership has launched a campaign to lobby the DSM-5 task force to keep a broad-spectrum concept of autism.”
DSM-5 criteria resulted in fewer misclassifications since the DSM-5 has higher specificity than DSM-IV.
Improvements in the Diagnostic Criteria
In order to evaluate DSM-5 criteria in children who were previously diagnosed using DSM-IV, the study concentrated and three large groups of children. A team of independent reviewers led by the study’s lead author, Dr. Marisela Huerta of NewYork-Presbyterian/Weill Cornell Medical Center, relied on a standardized 96-item parent report and a clinician-based measure of autism spectrum disorder impairments to analyze the data.
“These two instruments were particularly well-suited for the current study because they include items based on history and current behavior, and they take into account developmental level in their design,” says Dr. Huerta, an instructor of psychology at Weill Cornell and a professional associate at NewYork-Presbyterian Hospital. “This is consistent with DSM-5 criteria, which operationalize symptoms differently for individuals of different ages in order to account for the effect of development on ASD symptoms.”
The new criteria in the DSM-5 are designed to better diagnose children on the autism spectrum and differentiate them from children with other diagnoses. According to Dr. Huerta, “The criteria for DSM-5 are actually more inclusive.” For example, while DSM-IV criteria require evidence of difficulties related to autism prior to age 3, “DSM-5 says that a child has to show examples of unusual behavior in early childhood, with the idea that there is nothing sacrosanct about your third birthday.”
Dr. Lord states that the overall issue with DSM-IV was “not that a lot of people are diagnosed with autism who shouldn’t be, but that there is a lot of confusion because the criteria were not very accurate.”
“DSM-5 deliberately added and organized things to try to bring in and better address the needs of people with autism spectrum disorders of all developmental levels and ages — including girls, who were not represented as well as they should be in DSM-IV,” Dr. Lord says. “The goal of DSM-5 is to better describe who has ASD in a way that matches up with what we know from research, which predicts who has the disorder and also reflects what clinicians are actually looking at.”
Dr. Weinstein said, “Parents, caregivers and special education advocates must become knowledgeable about the proposed diagnostic revisions for Autism Spectrum Disorder and the possible effects on students receiving autism-related services. It is imperative that attention be given to the APA’s development of ASD secondary feature definitions, and the specific qualifiers that will be attached to an autism diagnosis. Becoming educated about these changes and additions is necessary so that you can be your student’s best, most effective educational and medical advocate.”