Proposed changes to the official autism diagnosis are raising concerns among advocates and families, with many fearing the new criteria will lead to a loss of services and a sense of identity for some high-functioning individuals with special needs.
“There’s no question some people (on the autism spectrum) will lose services,” said Dr. Fred Volkmar, an internationally renowned expert on autism and director of the Yale Child Study Center. Volkmar was the lead author of a study that found that only 45 percent of those currently diagnosed with higher functioning forms of autism would meet the new criteria.
Sarah Reed, director of advocacy and family services for the Connecticut Autism Spectrum Resource Center in Wallingford, predicted “chaos in the coming months. Families are confused and concerned that their loved ones with autism will not qualify for education and support services under the new criteria."
At issue are proposed criteria for autism spectrum disorders (ASD) in the American Psychiatric Association’s Diagnostic and Statistical Manual fifth edition (DSM-5). The new criteria combine three current diagnoses – Autistic Disorder, Pervasive Developmental Disorder – Not Otherwise Specified (PPD-NOS), and Asperger syndrome – into a single diagnosis with three levels of severity. One in 88 children has been identified with ASD, according to the U.S. Centers For Disease Control and Prevention.
The stakes are high for those who might lose their diagnosis or may never be diagnosed at all, noted Reed. A diagnosis determines eligibility for special education services, social services, social security benefits, insurance coverage and more. “Our concern is that school districts strapped for cash and insurance companies will use the new criteria as an excuse to not provide services,” she said.
The proposed changes also pose a “psychological blow” for those with autism, particularly high-functioning individuals with Asperger’s who “are aware of the proposed changes,” added Reed. “They feel their sense of self and identity is being denied” with the elimination of the Asperger’s category.
In the meantime, a coalition of groups within the autism community is urging licensed clinicians worldwide to take part in an online research survey to gauge the impact of the new criteria, according to Katie Weisman, SafeMinds director of communications and policy. SafeMinds, the Holland Center and other organizations created a website. (To view, click here.)
“The survey allows clinicians to enter data on newly diagnosed patients who meet the current criteria to determine if they would also meet the criteria under the proposed changes,” said Weisman. She hopes as many as 5,000 clinicians take part in the coming months. “We’ll make the data available to the work group drafting the new criteria, although the changes are probably a done deal."
The expert panel appointed by the American Psychiatric Association is set to finalize the new criteria by December 2012 for May 2013 publication. Volkmar resigned from the panel early on citing strong disagreements with the impact of the proposed changes. Some critics, such as Reed, believe the panel faces “political pressure” to stem sky rocketing autism rates in the United States. But panel members have said the new rules will bring clarity to the diagnostic process.
Numerous studies published this year offer contradictory views on the impact of the new criteria. Several studies showed that a significant number of people currently diagnosed with an autism spectrum disorder would be excluded using the new criteria. Children now diagnosed with PDD-NOS and Asperger syndrome would be most impacted, these studies showed.
But a study published in October in the American Journal of Psychiatry estimated the number of children now on the autism spectrum who would not qualify under the new definition at about 10 percent – not the 45 percent or more cited by previous studies.
While praising the scope of the new study, Volkmar said the methodology was “divorced from reality” because researchers reviewed cases of individuals who already had been diagnosed by experienced clinicians. “In the real world, it’s difficult to find clinicians outside large academic centers (and metropolitan areas) who have the time and experience to make an accurate and thorough diagnosis,” he said. “That is a worry."
Volkmar also criticized the manual’s dual use for clinical and research purposes, saying he would not have “any quibbles with the methods that have been used” by the expert panel if the manual was solely a research reference.
The shift in criteria may also create major complications for tracking the prevalence of autism disorders over time because the definition is changing in the midst of research endeavors, said Weisman. “It’s going to be a nightmare for epidemiologists,” she said.
Experts do not expect the debate over the effects of the new diagnosis to end anytime soon. “Sadly, we’re not going to know the full impact until we start using the criteria in the real world,” said Volkmar.