Asperger’s Syndrome, on Screen and in Life

By NEIL AMDUR
The three new movies would seem to have little in common: a romantic comedy about Upper West Side singles, a biopic about a noted animal science professor, and an animated film about an extended pen-pal relationship.

But all three revolve around Asperger’s syndrome, the complex and mysterious neurological disorder linked to autism. Their nearly simultaneous appearance — two open this summer, and the third is planned for next year — underscores how much Asperger’s and high-functioning autism have expanded in the public consciousness since Dustin Hoffman’s portrayal of an autistic savant in “Rain Man” 21 years ago.

“The more I learned about Asperger’s,” said Max Mayer, the writer and director of the romance, “Adam,” which opened last week, “the better metaphor it felt like for the condition of all of us in terms of a desire for connection to other people.”

People with Asperger’s may have superior intelligence and verbal skills, and they often have an obsessive interest in a particular topic (astronomy, in the case of the title character in “Adam,” played by Hugh Dancy). But they tend to be self-defeatingly awkward in social situations, and romantic relationships can leave them at sea.

The syndrome is generally considered a high-functioning form of autism, which in recent years has been diagnosed in more and more children. While the reasons for the explosion in diagnoses are unclear, increased awareness may be part of the explanation, and one reason for the growth in awareness is the rise of online parent communities.

Parents are “willing to get out there and talk about it,” said Dr. Fred R. Volkmar, director of the Yale Child Study Center in New Haven and a leading expert on Asperger’s and the autism spectrum.

“If you go on the Internet,” he added, “you will discover there are all these people trying to connect with each other online.”

Mr. Mayer, 54, grew up on the Upper West Side and was interested in developmental psychology before being drawn into theater and film. He says the inspiration for “Adam” came when he heard a radio interview about Asperger’s while driving in California and became so “emotionally involved” that he had to pull off the road.

The movie was awarded this year’s Alfred P. Sloan Prize at the Sundance festival, for outstanding feature film focusing on science and technology. It is being distributed by Fox Searchlight Pictures, whose recent credits include “Little Miss Sunshine,” “Juno” and last year’s Oscar winner for best picture, “Slumdog Millionaire.”

Mr. Dancy plays a young man with Asperger’s who is left to fend for himself after his father dies. One day a woman played by Rose Byrne — a “neurotypical,” as people with Asperger’s call almost everyone else — moves into the apartment upstairs. Romance ensues, along with misunderstanding and confusion.

“Adam is about life, not his disability,” said Jonathan Kaufman, the founder of the Manhattan-based consulting agency DisabilityWorks Inc., who worked as a technical adviser on the film. “It uses his Asperger’s as the lens that colors his life, not the central focal point. It’s about relationships, love, family. The illness is not separate from the person.”

Mr. Kaufman, who was born with cerebral palsy, founded DisabilityWorks nine years ago to help corporations and agencies develop ways to improve the quality of life for people with disabilities. He also served as an adviser on an HBO film about Temple Grandin, a woman with high-functioning autism who became a professor at Colorado State University and a pioneering designer of humane livestock facilities. That film, starring Claire Danes, is to make its debut in 2010.

Members of the Sloan Prize jury praised “Adam” as lifelike and believable. “The portrayal of someone who is enthusiastic about science rather than dismissed as geeky was very genuine,” said Fran Bagenal, a professor of astrophysical and planetary sciences at the University of Colorado.

And Raymond F. Gesteland, a professor of human genetics at the University of Utah, said “ ‘Adam’ will help the rest of the world look at Asperger’s with a new realistic light.”

Dr. Gesteland also screened the animated feature, “Mary and Max,” which opened the Sundance festival. It deals with the pen-pal relationship of a 44-year-old New Yorker, who has Asperger’s and lives on chocolate hot dogs, and a lonely 8-year-old Australian girl. The motivation for the film came from hundreds of letters, spanning 20 years, between Adam Elliot, a young Australian, and a middle-age pen pal in Staten Island who he later learned had Asperger’s.

“I wanted to tell a film about my friend,” Mr. Elliot, now 37 and an award-winning writer and director, said in a phone interview from Australia, where “Mary and Max” has grossed more than $1 million since its opening in April. “Asperger’s is a part of him; it’s the way he’s hot-wired. If I had ignored him, it would have offended him.”

Besides the movies about Asperger’s there are several new books, adding to a growing library that includes “Pretending to Be Normal” by Liane Holliday Willey, which is mentioned in “Adam,” and the best-selling memoir “Look Me in the Eye,” by John Elder Robison. Jessica Kingsley Publishers released three books this spring: “22 Things a Woman Must Know If She Loves a Man With Asperger’s,” by Rudy Simone; “The Love-Shy Survival Guide,” by Talmer Shockley; and “The Imprinted Brain,” by Christopher Babcock.

Ms. Simone, 45, who lives in upstate New York, was dating someone with Asperger’s several years ago when she learned that she, too, had the disorder. In an interview, she said she had just completed a second book, “Working With Asperger’s,” which she said she hoped would help people with the syndrome in the workplace. And she has begun researching a third about Asperger’s and females, a subject that she says is underreported and misunderstood. While four times as many boys as girls get the diagnosis, she said, “I’m absolutely certain that’s incorrect.”

Mr. Kaufman, of DisabilityWorks, said people were becoming more tolerant of Asperger’s “because it is front and center.”

“Awareness has been raised, and it’s fascinating to me,” he continued. “Is it acceptance? You could make the argument ‘yes.’ It is true that as it becomes the work of daily life, as we see people who have Asperger’s, it’s becoming less of a threat and part of our culture.”

What is Autism?

What is Autism?

There seems to be a lot of confusion as to what autism and autism spectrum disorders actually are. It’s understandable, because persons on the autism spectrum can be so individually different. Some cannot talk. Some talk early. Some are highly intelligent, others have some degree of mental retardation. Some have extreme sensory issues and some don’t. Some have motor planning problems, and some are very athletic. And the list goes on. So with all of these differences between individuals, what do these people have in common? Regardless of diagnosis - Asperger’s Syndrome, PDD, PDD-NOS, Autism or any other autism spectrum disorder, what all persons with autism spectrum disorders seem to have in common is their core deficit. Autism spectrum disorders arise from a neurological condition; a weakened area that seems to be located somewhere along the pathway that runs from the prefrontal cortex to the hippocampus of the brain. No one yet knows definitively what causes this condition.

Individuals on the autism spectrum seem to have this weakened pathway, which results in the following core deficits: Deficits in: comparative thought and interpretation, flexibility and adaptability to change, creative thought, decision-making, judgment, and memory of past positive feelings about events. In typical individuals, this pathway creates a hierarchy of comparison, and interprets everything we see, hear, do and feel. It compares one thing to another, compares past to present situations, compares how we felt before to now, separates important from the unimportant, and then uses all of that information to judge situations and come up with with unique solutions. Typical people spend most of the day using this part of their brain effortlessly, sailing through thousands of little moment-to-moment decisions with ease. But for a person on the autism spectrum, all of those tiny moment to moment decisions can be quite difficult and often scary. Because of the weakened brain pathway, individuals on the autism spectrum have a limited ability to compare, interpret and solve new situations. As a result, they remain tied to using solutions they already know, and have limited ability to deal with new or changing situations. Decision-making and judgment abilites that most of us take for granted, such deciding which way to go to the store today, interpreting and understanding the actions of other people, or even figuring out how near or far to walk next to someone often cause confusion and fear in a person with an autism spectrum disorder. As a result, the world often seems chaotic and scary to individuals on the spectrum, and other people seem to act in abrupt and unexpected ways that are just impossible for them to understand.

To try to control some of this chaos and keep things predictable, autistic individuals tend to rely heavily on formulas and repetitive sequences to get through their day. These sequences and formulas rely on a different part of the brain that usually functions quite well in persons on the autism spectrum. It’s the area of the brain that runs our “red = stop, green = go”, “2+2=4″ type thinking - very formulaic, very predictable , and very absolute thought. Unfortunately, this area of the brain is unable to compare, interpret, adapt, or see possiblities. Of course when faced with new or changing situations, when most formulas won’t work, persons on the spectrum often fall apart, out of fear of the unknown. Most of the tantrums, escape, or aggressive behaviors that we see at these times are usually “fight or flight” responses, motivated out of fear, not from being stubborn, manipulative or “bad”. One of the reasons Relationship Development Intervention is effective is because it addresses this pathway directly, by using different activities to exercise and strengthen it, much like what we do for other persons with weak or damaged brain pathways, such as persons with stroke or head injury, etc. You can find out more about Dr Gutstein and Sheely’s work via rdiconnect. Until recently, trying to understand autism has been very confusing - it’s only been explained as a series of seeminly unrelated symptoms. But once one understands the core deficit - the brain pathway that ties all those seeminly scattered symptoms together into one cohesive piece, autism becomes much easier to understand, and as a result more easily targeted and treated. Copyright 2006, Sandra Sinclair

About the Author
Sandra Sinclair is a parent of a child with PDD-NOS. Sandra assists parents of children with autism spectrum disorders to create a life that they love - life by design, not demands - through her 6-step program. She is also author of Newly Diagnosed Autism Spectrum - A free mini-course with 7 clear steps you can take to help your child with Aspergers, Autism, PDD-NOS, and other autism spectrum disorders. http://www.autismvoice.com/blog/7Ste