MERCER COUNTY, WV (WOAY)—John Daniel has a different perspective on the world, but he lives wholeheartedly and lets his inner light shine.
In 2021, Jamie Allen’s seven-year-old son received an Autism Spectrum Disorder diagnosis the family knew nothing about and he needed therapy not accessible in their area.
There are only 17 Applied Behavior Analysis (ABA) centers statewide.
As vice chair of the Special Needs Collaborative of Mercer County, she is trying to change that.
The neurodevelopmental disorder affects how people communicate, learn and socialize.
Allen’s three-year journey with autism in honor of Autism Acceptance Day is all about encouraging understanding, connection and community with Reframing Autism.
“How do you start when you want to give your child the world but you can’t access that world,” the autism advocate said.
While John Daniel is non-speaking, Allen says he recently developed pre-linguistic skills but cannot communicate or express basic needs.
“He has autism level three, which is severe (meaning) he will need care constantly,” she said. “Some people never develop speech, some people do. We are working with his AAC device, his speech therapist and in constant ABA training. When you’re in ABA, you have to live the lifestyle.”
They did — for 11 months traveling back and forth to John’s doctors, more than a three-hour drive to Morgantown. Allen says they worked with the WVU Center for Excellence in Disability, where they developed an ABA Lind Program and were taught how to do ABA Therapy.
“That was amazing and helped our family. But it replaced me from being mom, into the role of therapist and out of the workforce,” said the autism advocate, adding that everything changed because they don’t have the services locally.
Training doesn’t stop when one leaves their clinic. You learn how to do it at home and practice that from morning till night.
“I have hopes that he will be verbal one day because we’re not going to give up. We’re going to keep working and advocating to bring that therapy closer to home for him,” Allen said. “Locally, in our area of Mercer County, John has a much better chance of developing skills that would allow him to be a member of society that can participate. He could care for himself instead of being with us forever.”
According to the advocate, having an autistic child changes the trajectory of your life, from ’I’m going to grow up, get married and have a child.’ Now, the first day of school and all the milestones look different.
“But it means every milestone that we do reach is huge. It’s Christmas morning, huge. And John brings joy every day,” said Allen. “He teaches us every day how to be better parents, to be better people, and how to communicate not only with him, but anyone else with a disability.”
