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Parents applaud autism study recommendations

When Michael Borr’s son, who is now 23 years old, was diagnosed with autism in the early 1990s, the prevalence of the developmental disorder was around 1 in 10,000 children, he says. Now it’s 1 in 88.

“I used to say the tsunami’s coming,” said Borr, chairman of Waltham-based Advocates for Autism of Massachusetts. “The tsunami’s not coming. It’s here.”

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Borr and other advocates of increased support services say they’re hopeful that recommendations contained in a report released last month by the state Autism Commission will lead to improvements in how services are offered to people living with the disorder. In its report, the state commission, created in 2010, outlines dozens of recommendations that touch on housing, schooling, insurance, and employment, among other areas.

State Senator Richard Ross, a Wrentham Republican who is on the Autism Commission, cautioned that funding will be an issue in attempting to implement the recommendations.

“A lot of the other commissioners are a little more rosy-eyed,” he said. “You can’t do things without money.”

The causes of autism — and of the increase in prevalence — are not fully understood, although Borr said better diagnostics are likely responsible for part of the rising number of children diagnosed on the autism spectrum.

For Borr, two of the most important recommendations center on data collection and eligibility for services.

‘I’m cautiously excited. I hope it’s not, “For two years we’ll fund this, and then we’ll stop.’’ ’ 

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Currently, autistic adults with IQs above 70 are ineligible for help from the state Department of Developmental Services. The report’s authors recommend basing eligibility on functional limitations rather than on IQ, an idea Borr supports.

Borr, who lives in Sharon, said many people who are autistic face issues that don’t show up on IQ tests but still require assistance.

“They have social skills where they can’t interact within the community. They can’t hold a job. There’s a whole host of issues,” he said. “The spectrum is just that. You put 100 kids in a room, no two are going to be alike.”

Another recommendation calls for tracking data on the state’s autism population. Using the national prevalence number, the report’s authors made a rough estimate that 75,000 people in the state have autism spectrum disorders, but there’s no firm count.

For Jill Gichuhi, a Quincy resident with an 11-year-old son living at a residential school because of his autism, some of the report’s most important recommendations concern expanding existing services.

For example, families with children under 9 years old who are eligible for MassHealth coverage can receive money to help with things like having respite care provided by people trained to work with children who have developmental disorders. The report recommends making those funds available to families with older children as well.

Because her son is older than 9, Gichuhi said, she has to pay for such services on her own if she needs to leave him at home.

“Sometimes you luck out and you get someone who won’t make you pay an arm and a leg,” she said. “But a lot of times it’s difficult, because there are behavior issues and safety issues. You don’t want your neighborhood teenager.”

Gichuhi also praised the report’s recommendation to expand a program aimed at helping to keep kids in their homes, rather than placing them in residential schools. She said it would cost less for her son to be given services at home than to live at his residential school, but she can’t get those in-home services funded.

“It’s very frustrating for my family,” she said.

Lisa Bishop, a Lynn resident who has a 4-year-old son with autism, identified what she said was another common-sense, cost-saving recommendation in the report: getting MassHealth to pay for tablet computing devices, which can help children on the autism spectrum communicate. Her son, who has trouble speaking, points at pictures on an iPad to make his needs known, but her family had to pay for the device themselves instead of getting MassHealth to cover it.

“They cover very awkward, heavy, $3,000 devices, but they will not cover an iPad,” Bishop said. “An iPad is more socially acceptable, cheaper, and it also has other uses.”

Bishop said “there’s no reason” the recommendation can’t be implemented, but she’s unsure of the fate of measures that would require large amounts of additional funding.

“The state has no money right now,” she said, “so I don’t know what’s going to happen.”

“I’m cautiously excited,” said Gichuhi. “I hope it’s not, ‘For two years we’ll fund this, and then we’ll stop.’ ”

“I think the recommendations they came up with are a tremendous start, but it’s only a beginning,” Borr said. “They can make all the recommendations they want, but we need to turn those recommendations into a result.”

Calvin Hennick can be reached at hennick.calvin@gmail.com.
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