Proposed changes to how autism is defined and diagnosed should allow young children to be diagnosed sooner and get better treatment, said a top autism researcher.
Ami Klin, Ph.D., cautioned that the changes will not eliminate the daily challenges faced by people with the disorder and their caregivers.
Klin, who is known for the autism research he conducted at Yale, was a keynote speaker on April 7 at the Eighth Annual Young Child Expo and Conference. The two-day event, co-sponsored by the Graduate School of Education (GSE) and Los Niños Services, drew more than 1,000 parents, educators and other professionals who work with children to the Hotel Pennsylvania in Manhattan.
In addition to describing the work he plans to pursue as the new director of the Marcus Autism Center in Atlanta, Klin discussed some proposed changes to the definition of autism in the Diagnostic and Statistical Manual of Mental Disorders (DSM), which is being revised.
The DSM is the standard classification of mental disorders used by mental health professionals in the United States. It contains diagnostic criteria for every psychiatric disorder recognized by the U.S. healthcare system.
Professionals use the current edition, DSM-IV-TR.
The new edition will create a new category called autism spectrum disorders (ASD), Klin said. It also will put Asperger’s syndrome in the same diagnostic group as autism and pervasive developmental disorders.
Also, whereas there used to be three areas for the diagnosis of autism (social engagement, social communication and interaction, and restrictive behavior as a matter of interest), there will now only be two.
“They have found something we have known for years—you cannot separate social engagement from communication,” Klin said. “Basically, they are simplifying matters and trying to make sure the things that have not been found valid in research are done away with.”
Regarding the much-discussed proposal to change the classification of Asperger’s, Klin said such a decision would be difficult for people who already are identified in that category.
Overall, the changes will allow those in the field to diagnose children prospectively, which is the opposite of how diagnoses are made today.
“Right now, we look at a bunch of people at the age of five and six and 12 and 13, and we create a scheme. Then we go back in time and try to figure out what happened to those children in early childhood that might explain the way they became later on,” he said. “So we rely on information that isn’t very reliable.”
If diagnoses are made earlier, then chances are better that affected children will receive the appropriate treatment, he said.
“[Autism] is acquired in the first weeks of life,” he said. “Those children learn about the world differently. It doesn’t mean they cannot be intelligent or do wonderful things in life. They can.”
He admitted that some people oppose the ASD category because they believe that symptoms are not comprehensive enough at such a young age, which might lead to misdiagnoses.
Another potential outcome is that higher-functioning people, like those with Asperger’s, could be defined as having “milder” ASD, Klin said. “They are mild relative to the very disabled individuals with autism, but if you compare them to their peers, those conditions are quite grave,” he said.
Those in the field will learn more of the new DSM edition as its 2013 release nears.
“But none of that is going to have an impact on the challenges faced by our adolescents and adults,” he said. “Whether they are two or 22, it all starts with social skills moving on to communication skills, and then you have adaptive (real life) skills.
“Anything that is intangible, common sense, intuition—all of that is trouble. Many of our folks don’t take jobs, not because they don’t have the skills, but because they don’t have the niceties for a job interview,” he said.
Klin, one of the country’s most respected autism and Asperger’s syndrome researchers, received Fordham’s Excellence in Early Childhood Award at the conference.
“He is a clinician; he treats. He is an investigator; he does science. But most importantly, he is an advocate for families and for children,” said James Hennessy, Ph.D., dean of GSE.