Help for families dealing with autism

• Emily Miller

Emily Miller, of St. Paul Park, has a 5-year-old son with autism. (Bulletin photo by Patricia Drey Busse)

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In the two years since her son was diagnosed with autism, Emily Miller of St. Paul Park has done a lot of research … and a lot of driving.

A new Washington County committee aims to help the growing number of families like hers who have a child with autism, by providing them with information, and advocating for more services in the Washington County area.

The Autism Committee — made up of eight county social workers who deal with developmental disabilities — can conduct surveys to convey families’ needs for services and encourage families to speak up about what they want to have available, said Winna Bernard, a senior developmental disabilities social worker and committee member.

Having services nearby is only part of the problem for area families though. Just getting into specialized programs anywhere in the metropolitan area can be tough because of the growing number of children diagnosed with autism.

Miller said her son Elliot was on the waiting list for about one year before he could get into a day treatment program at Fraser Child & Family Center in Minneapolis.

“Space is an ongoing issue for us; the demand is outstripping the availability of services,” said Fraser’s Vice President and Chief Marketing Officer Brenda Beukelman. “The lack of services being available really reflects in the increase in the number of children that are being afflicted.”

The Centers for Disease Control and Prevention estimate that an average of 1 in 110 children has autism, up from 1 in 152 children in 2002.

Beukelman said the organization is growing at a pace of one to two clinics per year.

It added a Bloomington clinic this month, and previously opened one in Anoka.

A few months after Elliot was diagnosed with autism, before he got into Fraser, the family decided to put him in applied behavior analysis therapy — therapy that teaches autistic children skills that other children just “pick up” — in Minnetonka, for four hours a day, five days a week, Miller said.

“We spent the summer taking him there and picking him up every day, but it really helped him,” she said.

Having more intensive services available closer to home would help families like Miller’s, she said, and so would having more information.

For example, Miller said she wishes she had known she could have called the school district for a screening as soon as she suspected Elliot had autism.

Her first inkling he might have autism came when, at age 2, a babysitter remarked that she could be standing right over him saying his name and he wouldn’t even look up at her, Miller said.

“I kind of rolled that around in my head,” she said, “and then I thought, ‘No, he’s just shy.’”

Then one day he followed her around as she watered the garden repeating, “Hi mom, it’s me. Hi mom, it’s me,” lines from a video he’d seen, over and over again without acknowledging when she answered him. She also noticed he’d do things like line up toy cars or puzzle pieces, and that he wouldn’t answer when she said his name.

She asked her pediatrician about it at his age 3 physical, and the doctor referred her to a psychiatrist, who told her to call the school district.

Through a series of tests, the district gave him a diagnosis that qualified him for special educational services, such as a special education preschool program, however they also needed a medical diagnosis in order to get him into other treatment programs, and the waiting lists for diagnostic tests at Gillette Children’s Specialty Healthcare and Fraser were six to eight months.

“I wanted to know one way or the other … all the media that autism was getting at that time stressed early intervention, early intervention, and I’m like, ‘Well, I want to intervene if that’s what he has.’”

The family was in “stress mode,” she said, but fortunately the special education teacher they’d been working with brought in psychologist Sheila Merzer, who gave Elliot a medical diagnosis of autism.

Merzer said the large organizations that do diagnoses have long waits because of the increased demand for services.

“The incidence is huge and there are few people that specialize,” she said. Merzer said some pediatricians diagnose autism if they have the necessary experience and training.

Washington County’s Autism Committee is trying to help direct families to the services that are available through a new resource Guide on the county Web site. They also created a newsletter called Community Links and have plans to hold a camp-focused resource fair in the fall, said Bernard. After that, they have plans to possibly expand the committee to include community members, Bernard said, and to continue to work with daycare providers being trained to care for autistic kids.

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