The Friendship Club, which provides a forum for autistic children to meet and play, hosts a recreational outing somewhere in the Tri-Cities region every two months. (Photos by Lee Talbert/Johnson City Press)
With one in every 68 children diagnosed with some form of autism and the long-running challenges they and their families face, the limited number of available resources is surprising.
For many families, the initial step of obtaining a diagnosis critical to securing help for a child can take months or even years and often requires travel out of town for evaluation by a specialist.
Only a handful of physical therapy centers in Tri-Cities offer the pediatric services children with autism need.
The Autism Society of America’s single East Tennessee Chapter is based in Knoxville and serves a total of 36 counties, or more than a third of the state.
Once a year, the ASA hosts an autism conference in Johnson City or Kingsport with expert speakers and all-day workshops to update parents, educators and health-care professionals here on the latest findings and treatment recommendations.
Twice a year, the chapter conducts orientation classes for Tri-Cities parents of children who are newly diagnosed with autism.
Every two months, the ASA-sponsored Friendship Club hosts a recreational outing somewhere in the Tri-Cities region to give local kids with autism a chance to get together, play and socialize in a non-threatening setting and to allow their parents a rare opportunity to relax and share with each other the most helpful things they’ve learned.
And until a little more than a year ago, when Libby Theiben’s 10-year-old son, Wesley, told her he had no friends and no place he fit in, there was no support group for children with autism or their parents meeting regularly anywhere in Northeast Tennessee. As she has done since Wesley was diagnosed at age 3, Theiben set out to improve their situation.
Like many local parents with autistic children, Theiben’s first assistance following Wesley’s diagnosis came from Tennessee’s Early Intervention Program and from Wesley’s preschool.
“I went to school and I asked questions. I went on the Internet and I looked and I learned everything I could about what he needed,” she said. “He was non-verbal and he needed speech (therapy) and he needed occupational therapy, so I got him that (privately) in addition to what he got at school.
“At that age, communication was the most important thing. Insurance would only pay for one therapy, not two. So I got him speech and when his communication improved to (his age) level, I got him occupational.”
Outside of school, private therapy and the annual autism conferences, Theiben — who had only heard of the Friendship Club at that time — was without other help until fall 2012, when Wesley said he didn’t have any friends.
“I had heard the same thing from other kids at therapy, so I went to my therapist and I told her ‘I want a place where these kids can play.’ ”
Rosellen Ryals, a pediatric occupational therapist at Johnson City Physical Therapy Services, responded, “That sounds good to me.” And together the two women bought a few sets of Legos and began changing lives.
Ryals arranged for her employer’s therapy gym at 401 E. Main St. to be opened to autistic children and their parents and siblings every second Tuesday evening of the month. Theiben went to the Friendship Club and spread the invitation. And the Lego Club was born.
“The first night we had six kids,” Theiben said. Fifteen months later, attendance at the Tri-Cities Lego Club meetings now average between 20 and 30 children and an equal number of parents. The ASA East Tennessee Chapter has copied the club’s model, and in January launched a second Lego Club in the Knoxville area, where attendance is already rivaling the Tri-Cities’ club. A third ASA-sponsored Lego Club is currently being organized in Chattanooga.
For the kids, Theiben said, “Socialism is the hardest thing. We meet every second Tuesday at 6:30. There’s no agenda. They just build what they want to build (with Legos) and they build friendships they’ve never had before. ... These kids become a part of each other’s lives.”
Ryals, whose daily work with autistic children often focuses on socialization and small-group interaction, said at Lego Club “as children begin to talk to each other about what their building or what they want to build, their interaction and social skills blossom and their language follows because they begin telling each other what their ideas are in words.”
Among the parents at Lego Club, Ryals said, “I’ve seen them in tears when they see their kids talking to people for the first time without them telling them to.”
“Parents get the most information from each other. They share information about where to get the best help for their kids. Just sharing this information is huge, and just knowing they’re not alone and that someone else goes through the same things and understands is huge for them.”
Brook Dickerson, executive director of the East Tennessee ASA chapter, said while there are support services available to children with autism and their families, the resources are limited, scattered and not always available, especially in rural areas.
The therapies children need are expensive and too often are not covered by insurance, leaving children whose parents cannot afford to pay out of pocket without the treatment they need.
To reverse that trend, legislative reforms to expand insurance coverage for autism are pending in Tennessee and elsewhere across the country. And last month, a new specialty license plate from which proceeds will go to the ASA’s awareness, education and advocacy efforts went into production and is expected to be available at county clerk offices across the state this fall.
Other resources for families include Autism Speaks, a nonprofit organization that provides funding for research, advocacy and awareness, with information online at www.autismspeaks.org; the Autism Society of America East Tennessee Chapter at www.asaetc.org, 865-247-5082 or on Facebook; and Autism Tennessee at autismtn.org or 615-385-2077.
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