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The New York Times
ADVOCACY

A Mother Fights for Autism Services

By MARCELLE S. FISCHLER
Mineola

WHEN her son, Matthew, was born seven years ago, Evelyn Ain “set out to be the best parent” that she could be.

Having moved as a child from Russia to Israel, then settling in Valley Stream at age 12, she craved stability. She was an only child, and she wanted to provide her son “with everything that I didn’t have,” she said, including play dates and activities.

For Ms. Ain, 36, who opened a retail cellular phone shop at age 19 and nurtured her business into a nationwide chain of more than 100 stores, “that didn’t mean being a part-time parent,” she said. She walked away from her career and set up her life “to revolve around my family,” she said. Her husband, Gary, 43, is a real estate broker and investor.

She read about raising a child and, from the day Matthew was born, kept a log “just for fun” of every babble and crawl. It turned out to be a very useful document. She noticed that her son at 11 months wasn’t looking at her anymore, no longer babbled and seemed to have “lost his personality,” she said. Her pediatrician told her not to worry, but she saw “a drastic regression.”

Told by specialists to return when Matthew was 2, she didn’t want to wait, she said. At Kendall Speech and Language Center in Florida, an evaluation at 12 months concluded that he had pervasive developmental disorders, another term for autism spectrum disorders.

“I had to learn to be a parent of a child with special needs,” she said; she also became an advocate. Last April she founded Autism United, a national advocacy group, with Robert Krakow of Great Neck, a lawyer, and John Gilmore of Long Beach, who is executive director. It has a mailing list of 7,000.

On Nov. 7, Ms. Ain and 14 other parents from the nonprofit group gathered with protest signs outside the Nassau County Supreme Court here. Facing television cameras at a rally, they said local schools have not been providing the necessary intensive therapies and services to autistic students, and they threatened to sue the state.

“We have such a strong emphasis on early intervention, early detection,” said Ms. Ain, of Oyster Bay Cove, who in 2004 began publishing Spectrum, a bimonthly national magazine for families with children with autism and other developmental disabilities. Children are re-evaluated after preschool, she said, and services change. “What good is it if the services” don’t follow them through their school years? she asked.

As the number of children with a diagnosis of autism has skyrocketed, parents are fighting for appropriate education from districts straining to meet the increased demand, Mr. Gilmore said.

“We have parents on waiting lists for years to get into programs,” Ms. Ain said. She isn’t sure where her son, who now attends Variety Child Learning Center, a nonprofit program in Syosset, will be appropriately schooled once he becomes too old for that program next year. Matthew can read but cannot speak and, like all autistic children, has difficulty with social interactions.

The number of students on the Island classified as autistic more than doubled, from 1,343 in the 2001-2 school year to 3,005 in the 2006-7 school year, said Dr. Rebecca H. Cort, deputy commissioner for the New York State Office of Vocational and Educational Services for Individuals with Disabilities. She attributed the increase in the numbers partly to a better diagnosis and “understanding of the range of the autism spectrum.”

The types of services that autistic students receive are “very individually determined,” Dr. Cort said. While there “isn’t any cap on the numbers of students who can be labeled with special education,” she said, there are shortages of professionals “in several areas of special education, not just in autism.”

While some districts offer services, others send students to programs run by one of the Island’s three Boards of Cooperative Educational Services.

Matthew gets an hour of home therapy from a special education teacher after every school day, except during school breaks and vacations. Ms. Ain asserts that autistic children are entitled to a 12-month program; otherwise, she says, they regress.

Ms. Ain’s group, which raised about $150,000 at its inaugural walk in September, recently started resource centers at two agencies with programs for disabled individuals, the Family Residences and Essential Enterprises in Old Bethpage and Lifespire in Manhattan.

Ms. Ain said school districts need to go beyond academics to help autistic children. “My child needs to learn how to turn on the water to make sure it’s not too hot before he washes his hands,” she said. He can search the Internet and print out pictures of toys, but “he needs to learn how to cross the street in a safe fashion.”

“He needs to learn things that other kids don’t need to learn.”

E-mail: lijournal@nytimes.com


Copyright 2007 The New York Times Company
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