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Living and thriving with autism

by: Cecelia Haack, Justin plays a make-believe game with complex rules.

Classical music plays softly in Jim and Hope Wahl's modest living room. Their 8-year old son, Justin, skips and hops around the room as he sings a song to himself. He stops to play with his little sister, Molly, and then skips into the playroom.

Justin's a happy kid. He likes school. Loves his swimming lessons.

Justin has autism spectrum disorder.

Hope and Jim knew something wasn't right with him when he was a baby. He didn't nurse well. He cried all the time except when he was asleep or swinging in a baby swing.

She took him to his pediatrician who suggested they take a 'wait and see' approach. Maybe he'd grow out of it.

By the time Justin was 3 years old he couldn't settle down to play quietly with other children, and he did not relate well. He had difficulty making and keeping friends. His behavior seemed always inappropriate. Wahl was ready to pull her hair out.

By now his pediatrician thought Justin had attention deficit hyperactivity disorder (ADHD).

Then things got worse. She was pregnant with her second child and struggling with Justin when her insurance company informed her that she had to change obstetricians. For her labor and delivery to be covered by insurance she had to use a hospital on her insurance company's list. She needed a new doctor.

She was devastated. Left without any choices Wahl changed doctors just weeks before her due date.

By now Justin was almost 5 and not responding to any treatments for ADHD. Because Justin was so difficult to manage, Hope and Jim never left him with babysitters or in day care. Justin went to Wahl's obstetric appointments with her. That's how her physician, Dr. Suzie Bobenrieth, got to know him.

After observing Justin during office visits, Bobenrieth gently told Wahl that her own son acted in very similar ways and had just been diagnosed with autism spectrum disorder (ASD). Wahl was relieved that there might be answers for why Justin was such a puzzling child. Bobenritch referred them to a diagnostician who was able to diagnose Justin accurately.

Susan Castillo, Oregon State Schools superintendent, recently released figures for Oregon's special education count for the 2007-08 school year. The report shows there are 7,078 Oregon children, ages 0-21, who have been identified with ASD. This is an 11 percent increase over the previous year.

In Oregon the rate of children with autism is one every 89 children. Nationally one in every 98 school-age children has been diagnosed with this syndrome. Oregon ranks number three in the prevalence of ASD cases. Only Minnesota and Maine rank higher.

'There is a lot of research going into this,' said DiAnne Fentress-Rowe, coordinator of the Northwest Regional Education Service District's (NWRESD) autism and vision services. 'A lot of people want to know why Oregon ranks so high.'

When Justin started the first grade, Wahl explained to his teacher that he had autism and even though his behavior was sometimes bad; he wasn't was a bad child.

He wasn't able to share toys with other students. Sometimes he responded to perceived threats and challenges with tantrums.

In January of his first-grade year, he received his first Individual Education Plan (IEP) that meant he qualified for special education.

Time in the resource room with a special education teacher didn't seem to help. It was so hard for him to settle down and focus that he could not concentrate on his learning.

Justin's health care provider thought he might do better in school if he were on medication.

'No one wants to put their kids on drugs,' Wahl said. 'But we were running out of options.'

After much consideration the Wahls decided to try medications. Justin started medication in the summer. At that time he was also seeing an occupational therapist at Providence Medical Center in Portland. There he worked on his coordination, writing skills, learning to take turns and social skills.

'When he went back to school in the fall his teachers were amazed,' Wahl said. 'He was so much better.'

This school year Justin continues working with the teacher in the resource room.

'I learn to be calm and settled and to take breaks,' Justin said, and with a shake of his finger and a very serious face added, 'No nonsense or running around in there.'

He says he likes it in the resource room. Last Wednesday he got to play with Legos, and for most 8-year-olds that make any day a good day.

If you're concerned

The Northwest Regional Educational Service District offers free early intervention/early childhood special education (EI/ECSE) for children under the age of 5. Parents begin the process by calling Laura LaMarsh at 503-397-0028, Ext. 227, to discuss their concerns.

The next step is an appointment for further discussion and possible assessment of the child. This is a comprehensive assessment that includes a review of medical/psychological documents,

interviewing the parent(s) and observation of the child.

After the assessment a meeting is scheduled where the parents will find out if the child qualifies for EI/ECSE services.

If the child qualifies a program is developed based on his or her needs.

For additional information, visit www.nwresd.k12.or.us/specialed/ei-ecse/index.html.

Wanted: Support group

Wahl knows she's not the only mom in the community that has a child with autism spectrum disorder, but she feels alone.

'There are no support groups out here,' she said. 'It would be so nice to have a play group for Justin.'

Wahl is offering to be the contact person for an ASD support group. Parents, grandparents and caregivers of

children with autism may

contact her at her email This email address is being protected from spambots. You need JavaScript enabled to view it. .

'I'd love to be able to talk with other parents struggling with similar challenges,' said Wahl.