Parents of children with autism should not worry that proposed changes to the criteria redefining a diagnosis of the disorder will leave their children excluded or ineligible for care, according to a team of expert researchers.
A new study, led by psychologists at Weill Cornell Medical College, has determined the proposed criteria for autism spectrum disorders in the latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), due next year, won’t restrict access to care for kids with hard-to-diagnose aspects of the condition. The manual is the primary reference used by doctors to diagnose mental health conditions.
The study, published in the American Journal of Psychiatry, is the largest to date to examine the proposed changes. The redefinition aims to reduce the number of incorrect diagnoses and refine the criteria doctors and psychological experts use to identify and treat children who most need help.
"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," said lead researcher Dr. Catherine Lord, director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital's Westchester campus.
At issue is whether DSM-V will "capture" the same individuals diagnosed with different forms of autism by the last, fourth edition. The DSM-V proposal redefines autism as a single category — autism spectrum disorder (ASD) — whereas the previous edition had multiple categories and included Autistic Disorder, Asperger's Disorder, and Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS).
Critics have worried that children now diagnosed with PPD-NOS and Asperger's disorder would be excluded in future diagnoses, which could limit access to care and insurance. But that isn't the case, said Lord, based on the new study’s findings.
She said the researchers’ results showed 91 percent of 4,453 children they studied, who were diagnosed with a DSM-IV autism spectrum disorder, would be similarly diagnosed with ASD using DSM-V. Many of the remaining nine percent would likely be included once a clinician can offer input, said Lord.
The study also concluded that DSM-V has higher specificity than DSM-IV, resulting in fewer misclassifications — a key goal of the changes proposed for the new edition to help doctors better identify autism spectrum disorders and distinguish them from other conditions.
"DSM-V 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," Lord said. "The goal of DSM-V 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."