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.”
Grasso advised, “There are a couple of rules that a working parent with a special needs child needs to know. One, do not sacrifice a workout or anything like that, because you need to relieve the pressure. Everybody’s job, especially in this economy, is hard. There are a lot of pressures with the job, and then you have the pressures with the special-needs child. So if you do Pilates on Tuesdays, find a way to keep doing that. Also, be very clear and very honest with your employer about what your needs are and what the requirements of those needs are. You’ll find, I think, that most employers — if you communicate with them openly and honestly — will do whatever it takes.”
Grasso said his employer, Lexmark, “has been fantastic about it.”
Tanguay said there are now many helpful behavioral approaches for children with autism. And with higher functioning autism, he suggests not getting hung up on what the child can’t do.
“Find out what the child can do, and help him be successful using that approach,” he said.
Tanguay said autistic people can have considerable talents in very specific areas, such as mathematics or spatial relationships.
One such character was the fictional Raymond, the autistic savant portrayed in film by Dustin Hoffman. Tanguay, then with the UCLA Neuropsychiatric Institute, said he got a call one day in the mid-1970s from an assistant producer who had a script for a movie about a lovable mentally challenged person, and because Tanguay worked in the area of developmental disabilities and mental retardation, he wanted him to look at it. Tanguay and a colleague reviewed the script and told the filmmaker they didn’t think much of the story because it portrayed the Raymond character too broadly as “mentally retarded,” when the nature of his behavior was clearly and specifically that of an autistic person.
The project went through many writers over several years, but a script finally emerged.
“It was said that the movie Rain Man did more to help people with autism be understood in the community than all the professionals put together,” Tanguay said.
Tanguay is a retired Spafford Ackerly Endowed Professor of Child and Adolescent Psychiatry-Emeritus in the Department of Psychiatry and Behavioral Sciences at the University of Louisville School of Medicine.
The autism center that he will now oversee is a relatively new institution, he said, although elements of it have existed for about 15 years. It bundles together the resources of the Kentucky Autism Training Center, a state-sponsored organization that trains teachers and works with parent groups; the university’s clinical center, where evaluation and diagnostic services take place; and a research center that will look at the extent to which these various elements correctly carry out their goals, he said.
A University of Louisville Autism Center brochure lists workshops and technology resources as among services available to clients and their families. And Tanguay said he hopes to collaborate with other groups and institutions in the commonwealth, such as the University of Kentucky.
Tom Martin contributed to this article.