Woman with autistic child says many families must go it alone

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Woman with autistic child says many families must go it alone

By ROBERT M. COOK

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Article Date: Wednesday, May 14, 2008

CONCORD — At first glance, Amy Frechette seems like any other 32-year-

old woman as she held her dog, Eden, Tuesday in the main lobby of the

Legislative Office Building.

But the Portsmouth woman has suffered from Asperger's, a form of

autism, her entire life. Thanks to the support from her family and

others, Frechette has an associates degree and works full time for

the New Hampshire Institute on Disability at the University of New

Hampshire.

She was one of several members of the New Hampshire Commission on

Autism who addressed the media about the panel's report on how the

state can best help the growing number of children and adults

diagnosed with autism spectrum disorder.

" We need an instruction manual and a large one " to help people

afflicted with the neurological disorder learn the proper social

skills so they can work and live independently, Frechette said.

In some ways, the commission's 40-page report that will be forwarded

to Gov. Lynch is an instruction manual for state lawmakers to

help them find ways to better coordinate existing resources to help

families cope with the developmental disorder.

Rep. Suzanne Butcher, D-Keene, the commission's chairwoman, said the

panel concluded the state will have to do much more to help people

with autism and their families.

Some of the most significant recommendations include:

Universal screening for autism spectrum disorders at 18 and 24 months

of age for children;

At least 25 hours per week of intensive early intervention therapy

for all children diagnosed with autism spectrum disorders;

New models of supported employment to help adults with autism or a

related disability find and retain competitive employment and;

Pursue a dialogue with the health insurance industry to cover more

medically necessary treatments for people diagnosed with autism

spectrum disorder.

Bolick, a commission member and licensed psychologist who has

35 years of experience working with people with autism, said the

state's existing system to help people and their families is a

disorganized patchwork of services.

She explained that many social-service agencies, school districts and

state agencies that work with people diagnosed with ASD often don't

communicate well with each other, which often frustrates parents.

Commission member of Hanover, who has one son, 13,

diagnosed with ASD, and another son, 16, diagnosed with Asperger's,

said services need to be better coordinated to make it easier for

families to navigate the system.

The stress on families is enormous, she said. said the divorce

rate for families with a child with autism is nearly 80 percent.

said a study published by Harvard University notes that it

will cost $3.2 million to care for each child diagnosed with ASD over

the course of their lifetime. She said this is why it behooves

lawmakers to support more early intervention services and programs to

help individuals develop their special talents into self-sustaining

employment.

Butcher, who has a 27-year-old son who has autism, said there

are " several thousand " people in New Hampshire who have autism.

Nationwide, she said the Centers for Disease Control and Prevention

in Atlanta, Ga., one of every 150 children and one of every 90 boys

in the U.S. will be diagnosed with ASD.

New Hampshire officials are in the process of establishing an autism

registry to help the state find out exactly how many children and

adults have the disorder, she said.

Butcher also said the state Senate was expected to pass House Bill

1634 to establish the New Hampshire Council on Autism, a group that

will help families cut through the bureaucratic red tape and access

needed services more easily.

Commission member Jarvis of Rye, who serves as president of

the Autism Society of New Hampshire, said too many families have been

forced to go it alone and often try to serve as their child's parent

as well as the case manager and speech therapist.

Jarvis, who has an 8-year-old son with autism, said she hopes the

panel's recommendations will change that.

" They need to just be able to enjoy being a mom and a dad, " Jarvis

said.

Butcher said as difficult as the challenges may seem for families who

have a child with autism, there are also many reasons to have hope.

She said her 27-year-old son just graduated from Keene State College

on Monday and works full time at a company that utilizes his talents.