As author Jesse Saperstein prepared to speak about Asperger syndrome to an audience at the Saugerties Library largely composed of people diagnosed with the disorder and their families, he used some of the coping mechanisms he would later describe in the talk. He bounced a ping pong ball on a paddle and danced around the front of the community room. He said it calmed his nerves.
Asperger syndrome is an autism spectrum disorder. It’s relatively mild compared to other types of autism; its manifestations can be indistinguishable from personality quirks like social awkwardness and a tendency to develop obsessive interests. Its definition has undergone numerous revisions. The grouping of “spectrum disorder” reflects the difficulty of categorization — the disorders manifest in varying degrees in different symptoms rather than slotting into mutually exclusive groups which can be named and separated.
Most with Asperger’s don’t require any treatment. But still, because so much of the disorder has to do with socializing, it can be a challenge. Saperstein’s books address this. He is the author of “Atypical: Life With Asperger’s in 20 1/3 Chapters” and “Getting a Life with Asperger’s.”
People with atypical disorders often want to blend in. Saperstein advises the opposite. He said people with Asperger’s should let anyone they deal with regularly know they have the disorder and how it can affect their behavior. “Disclosure is the fine art of telling people that you have this incredible condition,” he said. “I believe disclosure is the most wonderful thing you can do for yourself.”
One of Saperstein’s problems is time management. He has two cell phones with alarms set to go off 15 minutes apart when he has to be someplace at a set time. “As someone with a disability, I find that sometimes the best way to work through it is by raging against certain weaknesses,” he said.
The talk was laced with humor. “You’re here to learn from my mistakes,” he said. “That’s why I made them, to give others a fighting chance.”
Members of the audience wanted to know about specific behaviors. For instance, a woman asked about her grandson’s apparent obsession with Lego bricks. Saperstein said many kids seem almost obsessed with the construction toys, including many who don’t have Asperger’s. However, he said, children with Asperger’s do seem attracted to Legos. “If it’s not breaking the bank or monopolizing all his time, I would say he should continue.”
“When you were a kid, was it a problem that you always wanted to watch TV?” asked Gerry Duffy.
“I did watch too much TV, and I also liked watching the same movies over and over again,” Saperstein said. However, he pointed out, many kids do that, not just those with Asperger’s.
Duffy said her grandson loves watching television, and he has total recall of what he sees. “He can watch it once, and six months down the road he remembers it. A year, two years later, he can quote it for you.”
One man said he found the terms autism and Asperger’s confusing, because they seemed to cover such a wide range of symptoms and behaviors. He said his grandson seemed to get along with other children well, and while he could be infuriating at times, he seemed like a normal kid.
“The autism spectrum is very broad,” Saperstein said. “You have the most severe cases, such as my girlfriend’s brother. He will hit himself, and his verbal communication is very minimal. I was playing catch with him once, and in trying to convey that he was tired of it, he started hitting himself and scratched my hands.”
On the other hand, “there are people who are straddling the line between what is considered normal and what society would consider quite abnormal. There are people who will blurt out what’s on their minds – things that will offend others, and then there are others who are extremely ginger about what they say, that are overly polite.”
In response to another question, Saperstein acknowledged that in some cases people with Asperger’s may be highly talented in some specific field, such as music, art or mathematics.
Duffy commented that she had read that while some individuals with autism had unusual talents in some particular specialty, this was by no means universal.
While Saperstein said he did not have any specific talents, his scrupulous punctuality, ability to concentrate and unwillingness to participate in office gossip were positive qualities he shares with many people with Asperger’s. On the other hand, the lack of self-control over speech and inability to understand nonverbal cues can get them into trouble on the job.
Gordie Haaland said that while his son is doing well in school, he is unwilling to move out of his comfort zone and try new things. “How do you challenge yourself to reach out to the world and try new things?”
“Necessity is the mother of invention,” Saperstein said. “I always had issues with the noise that subway trains make; there were times when I would walk all over the city to avoid that distressing zone. Then I realized that I wanted to be an adult and function in this world, so there are certain things I have to deal with and I would force myself to deal with them.”
He suggested that Haaland and his wife, Maresa, work with their son to draw up a contract that might specify that he goes to visit a friend once a week, and if he does so they will not try to get him to go out more often. The contract would be for a limited time, with the hope that once he started getting out of the house their son would increase his time on his own.
Brian Liston, who has worked at Price Chopper in Saugerties for 11 years, told Saperstein he admires him for the work he’s done to promote autism understanding. “I have also volunteered at many places, including the Saugerties Public Library. I would not have been able to do so without the support, not only of the community at large, but also of people who understood that I could disclose myself and not be considered a sociopath,” said Liston.