Dr. Peter Tanguay, a celebrated expert in the field of child and adolescent psychiatry who helped develop the Dustin Hoffman character for the film Rain Man, has been named interim director of the University of Louisville Autism Center at Kosair Charities.
Tanguay’s research has focused on autism and Asperger’s syndrome, a higher functioning condition on the autism spectrum. From 1975 to 1985, he was director of the Child Psychiatry Clinical Research Center at UCLA, where he developed practical ways for teachers and clinicians to become experts in the diagnosis, understanding and treatment of persons within the autism spectrum.
A major hurdle parents have encountered, according to Tanguay, has been finding someone who can conduct an evaluation, provide a diagnosis and explain why the diagnosis is appropriate.
“I personally believe that the ultimately successful systems for providing services to persons with autism have to be in the schools,” Tanguay said. “Of course, we have to help the schools be able to provide those services, because many of the teachers are not very familiar with autism or Asperger’s, or how you would deal with it.”
Kentucky House Bill 159, passed in 2010, changed some requirements for coverage of autism spectrum disorder (ASD), including the addition of applied behavioral analysis services. The mandate applies to health-care policies written in Kentucky and sold or renewed on or after these dates.
Autism was first identified by psychiatrist and physician Leo Kanner in 1943. A year later, Hans Asperger described persons who appeared to have similar problems but to a milder degree. The condition has been on the rise in the United States. The federal Centers for Disease Control (CDC) estimates that about 1 in 88 children has been identified with ASD. This most recent CDC estimate represents a 23 percent increase since 2009, and a 78 percent increase since 2007. It was not clear whether these significant increases represent soaring incidence or vast improvements in diagnosis.
The condition is often marked by communication and social difficulties, and those characteristics often challenge autistic children in social settings.
“Social communication refers to specific behaviors in which complex cognitive and emotional information is communicated through facial expression, emotional gesture, the prosodic melody of speech, and through knowledge of the social rules of communication — pragmatics,” he explained in an interview on Storknet.com. “The latter include what has been called a ‘theory of mind’ — knowledge that others have thoughts and feelings different from our own that can be ascertained and used to enhance our interpersonal relationships.”
Tanguay said other children may not understand and mistakenly think an autistic child is being willfully unresponsive, obtuse or negative.
“I think when people begin to understand, when other children begin to understand where these kids are coming from, it helps a great deal,” he said.
Hearing for the first time that your child has been diagnosed as autistic is a profound, life-altering experience. Jerry Grasso, Lexmark’s vice president of corporate communications, and his wife, Kim, were living in Atlanta when they were informed of their son’s diagnosis. He recalled that with the news, his world seemed to turn gray.
“When any parent has dreams and aspirations for their children and you get a crushing diagnosis like autism you kind of walk through a fog for awhile,” Grasso said.
The Grassos’ son, Demetrius, now 12, has gravitated to the Special Olympics swim team in Lexington, and this has created a focus, as well as a support network of like-minded parents for his mom and dad.
“My career has continued to be fulfilling and has continued to rise, but it’s not as if we didn’t have our own train wrecks in this,” Grasso said. “My wife never intended not going back to work. In fact, we had long conversations about her career and when would be the best time to have kids so she could re-enter the workforce and be in an executive-level position herself. Of course, with Demetrius’ condition, that all went out the window. So she’s now at the University of Kentucky, studying special needs education. Because of the experience she’s going through, she feels that she can help other parents. So that’s the adaptability in our marriage, right there.”