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Life through the lens of autism

Families and support services adapt to the rising autism epidemic


by: SUBMITTED PHOTO - SUBMITTED PHOTO Cora, now 12, dons her Ariel, of 'My Little Mermaid' fame, costume during a visit to Disneyland as her mom, Candice Becker, looks on. Cora purchased the matching costume for her Build-A-Bear kitty in this picture with money, called 'Cora Bucks' she earned for good behavior. Candice Becker said there were few reasons for concern regarding the earliest years of her youngest daughter, Cora.

Cora was even talking at the age of 2. And though there had been some characteristic quirks, it wasn’t too hard to dismiss them as the idiosyncrasies of someone who had an advanced way of looking at the world. After all, Becker’s oldest daughter, Rowan, was developmentally advanced.

But at Cora’s 3-year birthday party, things changed. Young guests seemed to be enjoying activities themed around the popular TV show, Dora the Explorer, but Cora wasn’t joining in.

“All of the other kids were having a great time doing things, and she was just sitting under the table,” Becker recalled. “And it made me think, ‘Something is different here.’”

It was Becker’s mother, however, who first used the “A” word — autism. She had observed Cora upstairs lining her books up in peculiar fashion, further raising suspicions.

Becker, who had worked in Portland at a school for the hearing impaired, had her daughter’s hearing tested and, when those results indicated nothing was wrong in that area, the director of the school outlined several options for Becker to have Cora evaluated. One of those included a trip to Oregon Health and Science University’s Doernbecher Children’s Hospital, where specialists in several fields ran tests.

“I was still hoping it would be something else, and I was actually still in shock when I got the diagnosis,” Becker said.

Autism is one of the fastest growing epidemics in the United States, and Columbia County has not been immune to the surge in autism diagnoses. The U.S. Centers for Disease Control and Prevention estimates one in every 88 children in the United States has autism, a complicated developmental disorder that imposes a broad range of possible symptoms upon those it afflicts, including physical ailments.

Autism generally appears within the first three years of life, according to the Autism Research Institute. The severity of the disorder ranges from mild — those with Asperger’s Syndrome or Pervasive Developmental Disorder (PDD), in both cases resulting in people who are societally functional but have a trait or two tied to autism — to extremely severe.

Autism is also a core driving factor in an Oregon Department of Education report released Wednesday indicating a year-over-year rise in the number of students who qualify for special education assistance. While the total increase in special education students is about half a percent for students in all Oregon schools, the increase in students assessed as having autism, from an educational perspective, rose nearly 3 percent — a difference of 8,962 and 8,694 students. Since the 2008-2009 school year, the number of students assessed with autism has increased 15 percent.

Distinguishing medical and educational autism

There is a difference between a medical diagnosis for autism and an educational assessment, explained Scappoose School District’s Mike Judah.

“It has to impact them educationally to determine if they need an individualized plan,” Judah said. A medical diagnosis could place a person on the autism spectrum for Asperger’s Syndrome or PDD, for example, though in a school setting such children might not require an Individualized Education Plan, or IEP, to aid learning.

Judah has been at the helm for administering Scappoose School District’s special education programs for seven years.

In Scappoose, the total number of students who qualify for special education assistance is around 13 percent, a number that closely mirrors the statewide tally of 13.3 percent of all students who qualify for special education programs.

Compared to the national figures, Scappoose schools are above the trend in the occurrence of autism. There are about 2,000 total students, Judah explained. Of those, 32 students have autism, he said. Of all students, that accounts for one out of 62.5 as being autistic.

For the most part, Oregon’s Educational Service Districts bear the brunt of providing special needs services. Stephen Jupe, superintendent for Scappoose School District, said he anticipates some changes to the ESD model arising from the current legislative session, including possible service decreases.

“We’re going through a process right now of trying to put together a different process to make sure we cover that,” Jupe said.

Autism in the classroom can have as diverse an appearance as the faces of the students who have the disorder, Judah said. In many cases, such as with Cora, who is a student at McBride Elementary School in the St. Helens School District, the school day is spent in a sensory controlled environment to help manage the often extreme sensitivity to external stimuli autism students possess.

In the event of a fire drill, for example, the students could be shown illustrations beforehand depicting the sequence of events leading up to and following the alarm, a visual tactic — referred to as a “social story” — that can be hugely successful.

Adaptation

In Cora’s case, Becker said her household uses social stories to communicate to Cora about upcoming events, which can range from a trip to the supermarket, her need to wear shoes in certain environments to a flight out of the state.

“We have tons of notepads, everywhere,” Becker said. She said the social stories are used to build a foundation for Cora so that she can better relate and accept the messages her environment is communicating to her.

There is one word that seems to best define Becker’s and her family’s approach to autism: adaptation.

Following Cora’s diagnosis, Becker said she learned of a program at Children’s Developmental Health Institute in Portland, which she described as a “boot camp” for parents who learn they have a child with autism. She was lucky to have good insurance, she said, considering Oregon does not mandate insurance coverage for Applied Behavior Analysis therapy, which Becker said has been invaluable in Cora’s advancement.

At the health institute, the family learned about support structures in and beyond their community. Even with that support, however, it can be hard to find time for others family members.

“It does affect the family significantly, especially siblings,” Becker said. Her oldest daughter, Rowan, has often had to compromise her needs for those of Cora’s, and Becker said she has tried to devote any additional hours in her day to Rowan. Funding for programs that provide such time, including respite care, is not always assured via the federal and state agencies where it originates, however. She said she recently received a letter indicating the five hours of respite care she had been receiving has been cut.

Living a Full Life

For those living in Columbia County, the go-to resource for mental health services is Columbia Community Mental Health.

David Richmond manages CCMH’s Developmental Disabilities programs, including autism services. Of the roughly 300 people receiving developmental disability assistance through CCMH, he said 90 — a full 30 percent — have autism.

CCMH’s approach toward autism in the community is to provide a range of individualized services, including in-home care to focused treatment for other aspects of the disorder, including socialization and vocational assistance and health and safety support.

To do so, he said the agency relies on other community support systems, such as churches and schools, to make sure it is connecting with as many people as possible — the services are voluntary, which can pose challenges for older people with autism who shut themselves off from others. In those instances, case workers can fall back on instructions from family members to help bridge the gap between isolation and social interaction, Richmond said.

He said that, in his experience, those who are autistic have every opportunity to live as rich and full a life as possible.

“Their life can look like what they want it to look like,” Richmond said, adding that CCMH promotes self-direction and self-determination in those who receive its services. “I think a person can be as active as he or she wants to be.”

Becker said she is excited that Cora, now 12, will be able to transition next year out of the more-controlled classroom environment to one that allows for greater stimulation and is just a step away from a regular classroom. Her treatments have taken her from someone who seldom speaks to a talkative little girl who likes to say “hi” and who can make her own light breakfast.

“What we’ve done is really try to focus on the positive,” Becker said. “Cora has a lot of talents. She has a great imagination. She’s really good at knowing where she’s at, she can draw maps. She has a great memory and is really funny.”