When an autism diagnosis is elusive…
Sometimes the path to recognizing autism in a child presents itself as a complicated maze. For Terilynn James’ family and her son Willis, the twists and turns are ongoing.
At his 18 month check-up Willis James showed signs of delays. A trip to the Pediatric Neurology Services Department at Mary Bridge Children’s Hospital in Tacoma resulted in a referral to Centralia School District 401’s Growing Together Program, “which was wonderful,” his mother Terrilynn recalled. Willis soon started classes.
Yet, Willis didn’t walk until 23 months; most babies start walking between 9 and 14 months. At 3, typical milestones slipped by unattained; at 4 Willis remained nonverbal. The family taught him sign language. Willis had lots of stimulation surrounded by 3 older siblings, so a pediatrician’s suggestion to involve him in a play group didn’t seem like a solution.
Terrilyn continued to search for answers to why Willis struggled increasingly with disruptive behaviors. ADHD existed as a possible but uncertain explanation. “I wanted a label because I wanted the help, ” she said.
Day-to-day challenges of autism
Finally, when Willis was referred to a neurologist at Valley Medical Center, an official diagnosis surfaced: autism. He moved from Ford’s Prairie Elementary to a small Christian school, but social situations became increasingly difficult for him. Willis presented sensory and GI issues, and spent lots of time in the nurses’ office instead of in class. Terrilyn took Willis out of school.
Terrilyn recalls changes in her son’s personality at this stage. “Willis began life with a sweet temperament, but disruptive behaviors increased at age 11 after we discontinued seizure medication. Eventually he returned to 6th grade and now attends half days until noon, then returns home for ABA therapy.”
Finding the Lewis County Autism Coalition
Before Terrilyn learned about the services and resources offered by the coalition, she found the comprehensive SEESAW Autism 200 Series, and watched all 45 videos on YouTube. She drove to monthly 90-minute classes taught at Seattle Children’s Hospital Autism Center.
She continued to search for nearby support in the Centralia area. Eventually she met several people involved with the coalition and learned more about its specific offerings. Terrilyn got involved with Parent-to-Parent and attended the 2016 and 2017 Annual Autism Conferences. Now she’s eager to take advantage of all the resources available, and has many ideas about how to help improve outreach to the community to spread the coalition’s message.
Willis’ journey forward
“Most of our friends are 5-6 years behind us in terms of the ages of their autistic children, so we are facing different challenges,” Terrilyn notes. “Willis has two friends who are on the spectrum, but he has huge struggles with peers. Willis is unpredictable. He might open his car door on the freeway, bite, kick or scream. I have a lot of stress about his transition to high school.”
Children on the autism spectrum are guaranteed to deliver unique surprises. Terrilyn lights up to mention, “Willis is very engaging with adults, and most people don’t believe he could possibly be disruptive, but he also has strong interests in life. “He loves the library!” Terrilyn revealed. “We’ve taken him to all 27 Timberland libraries. Maybe someday he can work at a library.”
Need information about programs mentioned here? Find autism resources in Lewis County.