NJ parents of children with autism need more resources, support, report says

From The Star-Ledger in N.J.:

TRENTON, N.J. — Parents raising children with autism need help. This much, the family advocacy group Autism New Jersey understood.

But when the group launched an unprecedented survey interviewing hundreds of families about what kind of help they needed, Autism New Jersey got a surprising response.

The survey, to be released Thursday, showed more than 60 percent of the families said the group should become a force at the Statehouse to fight their cause.

"In order to make meaningful change, they told us to change Trenton,’’ said 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.

Starting today, Autism New Jersey will distribute the report to the Legislature, to members of Gov. Chris Christie’s cabinet, and to local elected leaders. It’s a parents’ wish list, minus angry finger-pointing to keep the message positive, Meyer said.

"We are looking to improve the future. We wanted to hear what part of the system works,’’ Meyer said. "You can’t throw away an entire system."

The group conducted in-depth 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.

Kim Cristo of North Haledon (pictured), whose daughter has autism, said the report "outlines every worry a parent has about a child on the autism spectrum. It’s such a puzzle, so enigmatic. If you know there are services for your child, it’s comforting.’’

Cristo said she watched her chatty, engaging 16-month-old daughter, Ava, transform into a withdrawn "zombie child’’ — all within about a month. When she and her husband began researching therapeutic options, they struggled to find credible information. Their first dealings with a speech therapist who quit "devastated me,’’ she said. "She said Ava was too difficult a case for her.’’

The quality of people who work with autism — including special education teachers — was cited most often by parents surveyed. The report said they need to be experienced and well-trained — and "respectful of the individual with autism and the family," "loving," "engaging," "unflappable," and "positive."

Jodi Grillo of Rockaway Township said she fought for years to get a more inclusive educational program for her daughter, Jillian, 9, but needed to hire an attorney to make her case.

"They were trying to fit round peg in a square hole, and it wasn’t my daughter," said Grillo. After much discussion, the district agreed to send her daughter to a private school, "where she is doing "phenomenally."’

Meyer said she knows the wish list lands at time of unprecedented budget-tightening. State Human Services Commissioner Jennifer Velez, who got 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.