There aren't enough trained professionals in West Virginia to provide intense therapy for young children with autism, so West Virginia University wants to train parents to fill that void.
That's the main idea behind the Parent Implemented Training for Autism through Tele-medicine, or PITA-T, project.
PART 1 of 2
Tristan Hinebaugh and his twin sister Autumn were both diagnosed as autistic.
"Tristan had two words at the age of two and a half and he was very cognitively unaware of his surroundings. He didn't know, if we were getting ready to go somewhere what a coat was, how to put it on. Nothing," said their mother Tina. "Autumn sat in a corner and played with a string and didn't want to have any social interaction with any person at all."
When Tristan and Autumn were diagnosed, Tina felt like many parents when they hear the news.
"You're very scared," she said. "You don't know what to expect."
The twins are now four years old, and have been taking part in intensive therapy at WVU's Center for Excellence in Disabilities.
A therapist works with them individually on seemingly simple tasks like sorting pictures of clothing from pictures of vehicles or saying "bless you" after someone sneezes.
It's this kind of intensive therapy for young children with autism that can make a big impact on their development.
"Typically developing children absorb everything around them and children with autism are very busy kind of playing in their own space and not picking that up," said Susannah Poe, a faculty member in WVU's School of Medicine and one of the principal investigators in the PITA-T project. "So we need to teach them to learn how to learn and when we do that, we find a huge difference."
These are the elements of the PITA-T program that Tina uses with them at home, and it's given her more control over this battle.
"If someone offered me a cure for autism that would change my child's personality, I wouldn't take it. They are who they are and I love them for it," she said.
She urged parents to take the first step, and to not be afraid if they think their child could be autistic.
"It's just a label. Autism is just a label," she said. "Autumn is Autumn and Tristan is Tristan, autistic or not. There's help and there's hope for your children so don't be scared. Just don't be scared to take the steps and get them involved in early intervention."
The project is looking for 100 families with children 18 to 48 months old who have either been diagnosed with autism or meet the criteria for autism.
The project is supported by the Health Resources and Services Administration.
Call the CED at 304-293-4692 x1111 or x1144 or visit their website.
Part 2 of 2
Tina Hinebaugh is one of the fifteen parents now involved in the PITA-T program, almost two years after they were diagnosed.
"When they first got diagnosed, I had a meeting with their daycare providers and they asked me what to do. I told them I had no idea what to do," she said. "Not until I got a trained person on my side to guide me."
Tina was lucky to be near one. According to the CED, there are only 27 people trained to administer the kind of therapy that Tristan, Autumn, and many other kids in West Virginia need.
The PITA-T project will see if the right resources can let each parent fill that gap.
"The PITA training, specifically, brings the gold standard therapy for autism, and puts it in the parents' hands," Tina said, "and helps them wrap their head around the whole thing and control their situation."
The study lasts a year, and is looking for 100 families in all to participate before the study ends in 2013. The children have to be younger than four, but do not have to already have a diagnosis of autism. They just have to meet the criteria.
"They may be on a six to eight month waiting list to get the diagnosis," researcher Lashannah Brunson said, "but if they're interesting participating, we'll get them in, do the diagnosis and then they'll know if their child has autism and they can start the intervention much sooner because they have the diagnosis sooner."
Parents will have to visit a CED in Morgantown or Charleston at the beginning and end of the study. They'll get an individualized therapy plan for their child then video themselves working with their kids, send it in for evaluation, and receive feedback.
The program is designed to teach parents simple skills and then build on them for their children, according to researchers.
For Tina, it's made all the difference in feeling helpless about her children's progress.
"It's been wonderful, she said. "It's been everything to us to learn how to help them grow."
After a year of the clinic therapy and Tina's work in the home, the evidence is clear.
"Now, Tristan is speaking in sentences, he knows things, he understands his world," Tina said. "Autumn is expressing her needs and wants and throwing her arms around people and excited to be in a room with people."
Her success is a good sign for not just the PITA-T project, but helping West Virginia's autistic children grow and develop in the future.
"If we can reach children early and intensively with individualized programs and PITA-T is one way to do that," said researcher Susannah Poe, "then our whole generation of children will have a better future than the children of past generations."
The project is supported by the Health Resources and Services Administration.
Call the CED at 304-293-4692 x1111 or x1144 or visit their website.
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