Hundreds of families in Central Oregon have children under the age of 5 with autism. Parents, grandparents, and other caregivers from more than 30 of those families attended a free event on April 17 at the Alyce Hatch Center in Bend to learn more about autism in early childhood and related resources and services.
Perhaps the most important takeaway from the 90-minute event, as one parent said afterward, was “I’m not alone.”
Especially with increasing national attention on autism, Jennie Willis, assistant director of the Early Intervention and Early Childhood Special Education program at the High Desert Educational Service District, said she felt it was important to bring local families together for the first-ever event.
“We always want to make sure that we’re giving the latest, most accurate, fact-based information to the families we serve,” Willis said.
The event began with an online presentation by Lark Huang-Storms, a clinical psychologist who works at Seattle Children’s Autism Center and Oregon Health & Science University.
Huang-Storms emphasized that “autism is a natural part of the human condition,” which often comes with significant strengths in areas such as memory, attention to detail and creativity. She quoted a 15-year-old boy with autism who said, “A lot more gets done by people who aren’t distracted by social blah-blah-woof-woof all the time.”
Huang-Storms also discussed the combined genetic and environmental factors that cause autism. Extensive research shows that the increasing prevalence of autism, which is now identified in 1 in 31 children, is due to three factors: greater awareness and advocacy, increased screening and training, and a much broader definition of autism that came into use by practitioners in 1994.
Following Huang-Storms’s presentation, Mimi Johnson, parent partner for HDESD, led a panel discussion in which she and two other parents discussed their neurodivergent children’s strengths, common misconceptions they’ve faced, and the types of services and supports they’ve found most helpful.
Kap Seidel, who was on the panel, drew murmurs of understanding from fellow parents when he described his son as a “bright star” and a “creative, wonderful kid who gets you to fall in love with him.”
Seidel, whose son is now 10, said, “The world’s expectations matter less and less to me. I only wish I could have learned to put society’s judgments down earlier so I could support my kiddo in the ways he needs.”
Learning about Seidel’s experience and that of other parents was helpful to attendees like Jenn Smith, whose 3-year-old son was assessed for autism and received an educational eligibility for special education services last October.
“This is so new for us,” Smith said. “We’re just trying to take everything in and learn all we can.”
According to Willis, Smith’s son is one of more than 50 local children under the age of 5 who have received educational eligibilities under autism since the school year began last September.
As one example of the complex journeys facing families, in addition to an educational eligibility, many children also receive a separate medical diagnosis of autism, which can qualify them for insurance benefits and services such as behavioral therapy.
“We know that the earlier children with autism are identified and receive the support and services they need, the better their long-term outcomes, in terms of everything from daily activities to academics,” Willis said.
Smith’s son now attends preschool at the Alyce Hatch Center, where he also receives speech and occupational therapy. “He’s improved a lot already,” she said, noting the differences she’s seen in his motor skills and ability to communicate effectively.
When Smith realized her son was neurodivergent, she admits, “At first, I was upset, and it was so scary.” Now, about 18 months later, she said, “I understand that my son sees the world in a different way, and we need to try to see the world through his eyes.”
Willis, of HDESD, said it is important for parents of young children to know about the many local resources available to them. “Parents can always contact us for free screening or evaluation,” she said. “If their child qualifies for services, great, and if not, the family will still come away with helpful information and reassurance.”
If you have questions about your child’s development, contact the High Desert Educational Service District’s Early Intervention and Early Childhood Special Education program for information about available services, including free developmental screening or evaluation.
This article appears in Source Weekly April 24, 2025.
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