The Register Citizen (Torrington, CT)
What will happen when they grow up?
GREENWICH — When Christine Lai drives around Greenwich with her 13-yearold son, she constantly narrates what she is doing.
“I’m turning here; I’m making a left turn. I have to cross this lane of traffic. I’m watching those cars,” she says. “See those people? That car is breaking. That’s what it means.”
Lai doesn’t know if her son will ever drive. But she does know that his autism means her son has to be taught and repeatedly practice many lessons that neurotypical teens would pick up more easily.
Helping individuals with autism reach adult milestones — like driving, going to college or getting a job — was the subject of a panel discussion moderated by The New Yorker Editor David Remnick this week at Greenwich Country Day School. Sponsored by the nonprofit Next for Autism, the panel followed a screening of the documentary “How to Dance in Ohio,” which explores the lives of autistic young adults.
The film’s producer and director Alexandra Shiva, who participated in the panel, said she was interested in exploring coming of age with autism after meeting a friend’s daughter who was on the spectrum.
“Her parents talked a lot to be about how there is so much focus on cause and cure but not enough on what happens when kids grow up,” she said.
The film, which premiered at the Sundance Film Festival in 2015, tells the story of a group of autistic young adults who spend three months preparing for a formal dance organized by their clinical psychologist in Columbus, Ohio. At therapy sessions they learn how to talk to people they don’t know, ask a date to an event, and even dance the “Wobble,” in preparation for an evening that will challenge their social and communication skills.
“This film is an incredible opportunity to look at young adults with autism going into adulthood,” said Ilene Lainer, Next for Autism president and cofounder. “I find it a wonderful journey.”
A neurodevelopment disorder, autism can produce social, cognitive and communication impairments ranging from mild to severe. It is often identified in young children who may be avoidant, have abnormally developing language skills or difficulty with facial expressions or other social cues, among other characteristics. It is estimated one in 68 children in the U.S. has autism, according to the National Institute of Health.
According to Lainer, more than half a million teens with autism are expected to transition into adulthood over the next decade. When young adults reach age 21, they are no longer eligible for public school and other programs for autistic children, leaving some autistic individuals and their families struggling to figure out what is next.
Remnick and his wife Esther Fein have an 18-yearold daughter with autism named Natasha. She is nearly non-verbal and can only express her needs and wishes in primitive ways, her parents say.
“It’s really important for scientists to be doing research on the causes and potential cures for autism,” said Fein. “We also need advocates in Washington who are pushing for policy — insurance policies, educational policies, long-term living policies — that meet the needs of people with autism and even other developmental disabilities. But right now, people with autism need programs. They need ways of feeling involved in the community, ways of having jobs, of having places to live.”
Remnick and Fein are both Next for Autism board members and live in New York City.
“We live in a moment now, it’s a very hard moment,” said Remnick, who has been editor of The New Yorker since 1998 and reported on topics such as Russia and the Middle East, interviewed multiple presidents and published six books. “I think people are struggling to figure out ways they can express their solidarity and humanity... Compassion is not on the tip of everybody’s tongue; let’s just put it that way. So when groups that come along that are as serious and as decent as Next for Autism — I can name a whole bunch of other ones, but we’re here for that one tonight — they can show concrete help. For some people that means time, for other people that means money, and for a lot of people it means showing up, like they did tonight, and a watching a movie to see something, to feel something that they didn’t see yesterday.”
Next for Autism serves the New York metro area with programs in New York City and Westchester County that integrate autistic individuals into their neighborhoods through mentoring or internship opportunities, among others. Communities can better support individuals with autism by being more inclusive and welcoming, Lainer said.
Lai, a Next board member from Greenwich, described receiving dirty looks when she was out with her autistic son if she could not control his behavior. Some people whispered behind her back that she was a “bad mother,” or her son a “bad child.”
Now that her son is older, she wants the same things for him as her normally developing 11-year-old son.
“What do we want for their future? We want them to live independently, we want them to have a job or some sort of meaningful activity,” she said. “We want them to have friends, we want them them to romantic interests, we want all the things we want for our typical children for our children on the spectrum.”