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Startup hopes to help children with autism in rural areas
By Daphne Chen
SALT LAKE CITY — On his parents’ 150-acre homestead in Fritz Creek, Alaska, 4-year-old Joshie has the world.
On the floor of the living room, he’s built a pretend toy village, where he and his parents live just down the street from their family’s old home in Georgia, and around the bend from his uncle Jeremiah, whose house has been transplanted from Farmington to Fritz Creek, population 1,932.
It was his beloved uncle, Jeremiah Riley, who first thought that Joshie might have autism. It was Riley who convinced his brother and sister-in-law to take Joshie to a neuropsychologist to get tested. And when Joshie was finally identified as having moderate autism, it was Riley who was determined to make sure other kids like his nephew, who are a 4.5-hour drive from the nearest major city, could get advice and support from an autism professional.
“My brother (is on the autism spectrum),” said Riley, who is a father and a government relationships consultant. “My brother’s son is. Autism is, in a real way, it’s a part of my life.”
Riley’s idea was this: Why not provide behavioral therapy, via video chat, to children with autism in rural places?
When Riley told his idea to Taryn Nicksic-Springer, a Salt Lake City-based board certified behavior analyst who provides in-home behavioral therapy to children with disabilities, she jumped.
“Parents are the best therapists that we have out there,” Nicksic-Springer said. “They’re the best resource because they’re with their child more than any other person.”
In recent years, Nicksic-Springer has turned her focus to providing therapy to rural or low-income families through online modules. She works primarily with parents, teaching them how to play with their kids in a way that improves social skills or motor skills.
“The research on that is just exploding,” Nicksic-Springer said. “They’re showing that a lot of benefits are happening with in-home telehealth, not just with individuals with disabilities, but also depression, diabetes management, high-risk heart patients.”
The Rileys have been working with Nicksic-Springer since Joshie was diagnosed with autism in May.
Calling from Fritz Creek, Joshie’s grandmother Colleen Riley said the family began to suspect Joshie had autism when they noticed his social and verbal skills were worsening.
A cherubic 4-year-old with large brown eyes, Joshie was clearly intelligent, but he was also taciturn and seemingly disengaged.
Rather than answer Colleen Riley’s questions, he would parrot her words. Rather than play with his trucks, he would line then up. If brought to an unfamiliar place, he often had complete meltdowns.
The hardest part, Colleen Riley said, was how Joshie wouldn’t make eye contact or respond to family members when they talked to him. It made her feel as though her grandson simply didn’t care about her.
“His communication was really not developing it at all. He was pretty much just in his own little world,” she said.
Nicksic-Springer said one of the most important things she does is identify therapeutic toys that will help kids learn specific skills. Then, she works with family members to teach them how to use the toys.
“A lot of children with autism have deficits with play skills,” Nicksic-Springer said. “Giving them toys that have a therapeutic nature to it and giving them some instructions with it, saying, this toy can work on expressive language skill or imaginary play skills — that’s not intimidating to parents.”
For example, Joshie loves Squigz — colorful suction cups that he sticks on windows, floors and foreheads.
Nicksic-Springer advised Colleen that Squigz are a chance to focus on improving Joshie’s pronouns — an area of trouble for many children with autism. While playing, she told Collen, try to ask Joshie: Is the squig on my forehead? Can you put it on his forehead? Can you put it on your forehead?
Nicksic-Springer also had the family focus on puzzles. When Joshie was evaluated by a neuropsychologist in May, he had so much trouble with pattern recognition that he had trouble putting even two pieces together.
Now, Jeremiah Riley said, Joshie is “a different kid than he was in the first part of the summer.”
“He’s much more expressive, you can engage with him, I can talk to him over FaceTime and he’ll look in the camera,” Jeremiah Riley said.
So much so that Joshie, who is normally shy, brightens when he sees his uncle on the screen and tells him he wants to show him his puzzles.
When asked whether he likes puzzles, Joshie pauses, then exclaims, “I love puzzles!”
“That’s a big deal,” Jeremiah Riley said excitedly.
Colleen Riley agreed: “To me, that’s a huge victory.”
“You see the individual shining through,” she said.
And so it goes for the Rileys, and for many other families with children on the autism spectrum: celebrating small victories and tiny steps, progress that brings a family closer together.
Jeremiah Riley believes the company, which he and Nicksic-Springer are calling ReachASD and which will have a soft launch on Sept. 1, will be one of the first companies in the U.S. to offer autism therapy through video chat.
For now, the company will focus on offering toys and access to the autism specialists who will advise parents on how to use those toys. It will be based on a subscription box model: Families can pay $24.95 per month for a box of therapeutic toys, selected by an autism professionals to address a specific skill, and access to that expert via email. Those willing to pay $49.95 per month for a premium subscription will receive a monthly shipment of higher-end toys and unlimited access to a skills expert via video chat.
The plan, Jeremiah Riley said, is for ReachASD to one day offer direct clinical therapy to children with autism via video chat. Before they can do that, they must figure out how to comply with telemedicine regulations that are different in each state.
“I wish we could offer it now because kids need it,” Jeremiah Riley said. “We’ll overcome the regulatory hurdles soon.”
Over in Fritz Creek, where Colleen Riley’s conversation with uncle Jeremiah is winding down, Joshie has decided he needs more attention.
Coming up to the camera, he shouts, “Talk to you later!”
“Ok,” Colleen responded. “That’s him saying that I gotta go.”
But she laughs, delighted.