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Times Herald-Record - WEDNESDAY APRIL 28,2010 By Deborah J. Botti
Education, understanding are needed
Enjoying spring in the backyard of their Westtown
home are Carol Pister and her 13-year-old son,
Connor, who has autism.
Times Herald-Record/DOMINICK FIORILLE
It bothers Carol Pister of Westtown that the media often spotlights higher-functioning people with autism.
Not that she doesn't applaud their successes — but it makes it more difficult for Connor, her 13-year-old son with autism. "People need to be aware," she says.
Because if they were aware, maybe they wouldn't stare so much, or take offense if he touches them, or make hurtful comments, or think that she's a bad parent of an out-of-control child.
Along with educating the public, JoAnn Atlas of Howells, mother of a 20-year-old daughter with autism, would also like to educate the first-responders — police, firefighters, EMTs.
"My greatest fear is that if I'm in a car accident with Sarah and I can't speak, she'll become more injured trying to fight them," says Atlas.
Cause unknown
Autism is a neurobiological disorder with a genetic component that affects communication, sensory perceptions and social behaviors, the cause of which is unknown, says Jamey Wolff, program director and co-founder of the Center for Spectrum Services in Kingston.
Between its two schools and clinic, the center serves 250 people with autism spectrum disorders in the Hudson Valley. Historically, there had been a low frequency of occurrence; today, a conservative estimate from the Centers for Disease Control is that autism affects 1 in 110 girls and 1 in 99 boys. In 2003, there were 10,617 people ages 4-21 with autism in New York state, says Atlas. That number jumped to 19,132 in 2008, and does not include those older than 21 or those who have just been diagnosed.
Parents and experts alike can't stress enough the importance of early intervention. "The brain is more malleable, more receptive when a person is young," says Wolff. "There is a spectrum of needs."
"Their brains are wired differently," says Atlas, whose daughter, Sarah, turns 21 in August. "It's as if they're in a constant state of anxiety. ... If she's out in public and doesn't want to go, she drops," says Atlas. "Now that Sarah's older, she's much better at waiting, but it still can be an issue. You just have to plan everything. And it's a balancing act — you have to think out of the box."
Pister explains that Connor loves to go out to eat. But if he's not served fast enough, he might make unusual noises or stomp.
Family pressures
"He's not a bad person. He just doesn't understand," says Pister. And the same person who spits and bangs into walls and furniture is also very affectionate. Connor prays at night with his father, Joe. "He dictates our lives," says Carol of the stress on her marriage and the whole family unit, which includes 15-year-old daughter Madeline. "Support groups are nice, but it's time away when we're needed — after working all day."
In response to the need and in conjunction with the Community Foundation of Orange and Sullivan, Atlas has established the Lt. Gregg Atlas Foundation, in honor of her husband who died on 9/11. The foundation will serve adults with autism and their families.
"Our area has more programs than most," says Jodi Rubinstein, community services coordinator of Greystone Programs Inc.'s western satellite in Sugar Loaf. The main site is in Poughkeepsie. "Although transportation is a huge problem." Greystone's Club Atlas, for example, works toward independence with 10 young adults transitioning out of high school. There's a program where a mentor works with youngsters with autism in their homes after school, Saturday respite and 12 group homes, to name just a few of its offerings.
Pister worries about Connor's future after she's gone. She wants to see him living independently as a young adult. But for now, he belongs at home, she says. "Parents should not give up hope. Each child has gifts," says Wolff. "It's our challenge to find them."
RESOURCES FOR PARENTS
• A list of services, links, news and events for people with developmental disabilities, their families, educators and service providers can be found at www.orangecountynyddconnection.com.
• "Ask the Expert," articles, links, programs and services, as well as a trailer of the documentary "The Asperger's Difference" (and purchase of DVD) are available at http://centerforspectrumservices.org.
• General information on Greystone's programs and services can be found at www.greystoneprograms.org.
• The Orange County Mental Health Association at www.mhaorangeny.com or 291-2622
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