When Holden Sidell was born in 1994, he was a happy, healthy infant who reached all his developmental milestones. A video of him at 8 months shows a babbling, engaging baby. By age 2, his vocabulary encompassed 50 words, plus a couple of two-word sentences. And then suddenly, the words that came so easily to him began to disappear.
“He started losing language,” said his mother, Dawn Sidell. “Everything happened quickly.” Concerned, she took him for an evaluation. Shortly after his second birthday Holden was diagnosed with autism. He’s not alone.
According to the U.S. Centers for Disease Control and Prevention, 1 out of 110 children in the United States are affected by autism spectrum disorders, a diagnosis occurring more than cancer, diabetes or any other childhood disease or disorder.
In Washington 8,000 to 12,000 children and youth struggle with the disability. Yet Dawn Sidell said, “Agencies agree that autism is under diagnosed.”
Autism is a complex neurological disorder appearing from birth or early in development. A “spectrum” disorder, its effects range from mild to severe, and impact language, self-regulation and the ability to engage in relationships.
For Sidell, her son’s disability has prompted an ongoing journey of discovery and education. She is the founder and executive director of Northwest Autism Center. But at the time of her son’s diagnosis, she said, “We knew nothing about autism beyond ‘Rainman.’ ”
She grieved as Holden stopped speaking and wouldn’t look into her eyes. Birthday parties proved especially painful. “I’d watch the other kids play and interact while Holden would stare at a door.”
When her marriage ended in 2000, the Riverside High School graduate moved her family back to the Spokane area. “My biggest hope was that we’d find qualified behavior intervention specialists within the school system,” she said. Unfortunately, school funding and resources were already stretched thin.
As hard as it was to find proper treatment for Holden, finding an insurance provider to cover it proved even more challenging. “Intensive behavioral therapy isn’t covered by most insurance carriers,” she said. “But many other treatments are also either not covered at all, or only partially covered.”
In fact, autism is considered an “orphan” disease. Sidell said, “It’s unclaimed by the mental health, education and medical communities.”
One organization proved especially helpful: the Autism Society of Washington. Sidell found practical tips and unwavering validation in the parent support group sponsored by the group. “They were a great resource for everything from where to get haircuts, to a dentist.”
Finding basic services like these for an autistic child can be fraught with difficulty. Not many businesses or health care providers are equipped to handle a nonverbal, autistic child in full meltdown mode.
Her experience led Sidell to establish the Northwest Autism Center in 2003. The center’s vision states: Each individual with autism spectrum disorders living in the Inland Northwest will have access to early diagnosis and treatment; best practices in public education and health care; and, the social supports necessary for optimal personal growth and the fullest level of participation within family and community.
“We’re a tiny organization that can help parents navigate a system or hook them up with existing resources. Most of what we offer here is practical advice,” Sidell said,
In 2005, Northwest Autism Center launched the Domino Project in conjunction with Eastern Washington University and Providence Sacred Heart Children’s Hospital. The project features two components: an intensive early intervention program for young children on the autism spectrum and their typically-developing peers, and a university-based teaching and observation center for students, educators and other autism professionals.
However, as Holden grew so did Sidell’s challenges in caring for him at home. At 13, he was 6-feet tall and weighed 180 pounds. “His meltdowns grew more and more frequent and lasted longer and longer,” she said. “I couldn’t contain him because of his size.”
Fifteen-year-old Holden now lives in a group home where he receives the intense level of one-on-one attention he needs. He is still very much a part of the family. In the winter he skis with his mom and during the summer enjoys visiting his family at their Long Lake home for barbecues and swimming.
Sidell is outraged at the dismal lack of adequate health insurance coverage for children diagnosed with autism spectrum disorders, and she spends a great deal of time in Olympia educating politicians about the need for legislative action and policy change.
“It’s heartbreaking to understand what’s not out there. I’m committed to making a change in Washington state that will help all kids with autism, not just my son,” Sidell said.
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