Autism New Jersey is expected to distribute the 25-page report to lawmakers Thursday
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Kim Cristo, right, looks on as her 2-year-old daughter, Ava, receives occupational therapy from Michelle Doonan, an applied behavioral analysts. Ava was diagnosed early on with autism and receives two hours of therapy at her home.TRENTON — An in-depth survey of parents raising a child with autism found families need the state to take a more active role in helping them find the right therapists, schools, job training and respite care services.
And they want Autism New Jersey, the family support organization that conducted the survey, to become a greater force at the Statehouse to fight their cause.
Autism New Jersey is expected to distribute the report Thursday to the Legislature, members of Gov. Chris Christie’s cabinet, and local elected leaders.
"In order to make meaningful change, they told us to change Trenton,’’ said Autism New Jersey Executive Director Linda Meyer.
Parents in New Jersey — where the autism rate is highest in the nation — are often too consumed with looking for therapy or educational or vocational programs for their child to solve the red tape of government-funded services, Meyer said. "So often, families are very negative and frustrated and challenged by the system," she said.
"Rather than add to the chorus of much deserved criticism, Autism New Jersey chose instead to listen to not only the needs but the hopes and dreams of the autism community,'' according to the 25-page report.
The group conducted 2,000 hours of interviews with 537 people, nearly 70 percent parents or grandparents and the rest teachers, doctors or other professionals. Every county was represented; nearly half the participants live in Bergen, Mercer and Middlesex .
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Kim Cristo with her 2-year-old daughter, Ava, who was diagnosed early on with autism. She now receives therapy at her home in North Haledon.Nearly 400 people expressed their desire to see the quality of professionals who work in the autism field improve. They need to not only be experienced and well-trained, but also "respectful of the individual with autism and the family," "loving," "engaging," "unflappable," and "positive."
Meyer said she knows the wish list lands at time of unprecedented budget-tightening. To pitch-in, Autism New Jersey will compile a directory of employers and nonprofits willing to provide volunteer and paying jobs for people with autism, and relaunch its website "to lead people to what we hope will be true sources of information,'' Meyer said.
State Human Services Commissioner Jennifer Velez, who viewed a copy of the report, said its "valuable personal perspectives of families’’ will help guide the department as it plans to create an Office on Autism.
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