Intensive childhood therapies makes graduation possible for student with Autism

May 24—FAIRMONT — Before her Friday graduation, Hope Amanda Crichigno practices at home what her walk across the stage at the Mylan Pharmaceutical Stage will be like.

Crichigno has profound autism, and the overstimulating environment of a hectic graduation ceremony poses a challenge to her. To help her prepare, her parents Sarah and Fabio Crichigno try to simulate the ceremony as much as they can in a safe and secure environment.

"I'll announce her name and we all cheer for her loudly because I want her to get used to loud noises," Sarah Crichigno said. "And we have her walk when they call her name, practice walking and waving."

Making it all the way through high school to graduation is a remarkable achievement for Hope, 19, one that makes her mother proud. However, participating in this rite of passage into adulthood is another level of complexity that most parents never have to worry about.

Friday's event isn't just a mark of achievement for Hope. It's also a mark of success for the group of therapies designed to get kids with Autism like Hope ready to interact with the real world. Hope is the beneficiary of Applied Behavior Analysis, an evidence-based therapy that uses learning theory to change behaviors in people with Autism and other developmental disorders.

Susanna Poe, professor emeritus at West Virginia University's Department of Pediatrics and director of Applied Behavioral Analysis at WVU Medicine Children's Neurodevelopment Center developed the program Hope entered as a child. Poe first encountered Hope as a premature baby, born at 24 weeks.

Hope endured six months in intensive care, multiple surgeries and 17 blood transfusions. Because of the intense complications, the Autism diagnosis did not take Sarah Crichigno by surprise when it later arrived. Crichigno knew a health complication was possible. After receiving Hope's diagnosis, doctors told Crichigno it would take 6-8 hours a day of intensive ABA treatment.

Around the 2007-09 timeframe, Poe established a clinic at the WVU Center for Excellence in Disabilities, with an eye toward meeting the needs of kids that were diagnosed with Autism with evidence-based treatments. Using help from graduate and undergraduate students, Poe developed her treatment. In 2009, Poe made space for two children at the clinic. One was Hope.

At the time Hope and her family lived in Preston County. Poe helped assess what Hope's needs were and what treatment paths to take.

"She came in we played with her, we made it appealing to be there by finding out what she liked to do, learning more about her and following her lead in teaching her things," Poe said. "Also finding ways to work in important skills like repeating sounds, imitating actions, following directions, learning how to play with another person, learning how to point to things and to follow a point."

A team grew around Hope. Hope herself worked hard, overcoming challenge after challenge. Poe said when Hope started she ate using a feeding a tube, due to gastric issues as an infant. Hope's parents wanted to find a way for Hope to be medically cleared to eat without a tube.

"We started out in small steps, introducing her to eating," Poe said. "Introducing her to different textures and shapes of food, having her imitate us as we ate them, learning how to chew and swallow. By the time we finished that programming with her, she had her feeding tube removed and was eating all table food."

More than 10,000 young West Virginians face Autism, according to a report published by the We Develop AVA Coalition. However, 96% of young people with Autism don't have access to the types of therapies and early intervention strategies that made such a difference in Hope's life. We Develop coined it the Autism Services Gap.

A chronic shortage of funding to pay competitive wages makes it difficult to retain providers trained in ABA methods throughout the state. Most end up relocating to states with higher pay.

The lack of services can be devastating to children with Autism and their families, board certified behavior analyst Haley Johnson said. Johnson is also the co-owner of the Key Learning Autism Center in Morgantown and was one of Hope's therapists.

"We are always trying to get as many kids as we can but at the end of the if we don't have enough workers, space, whatever the hold up, you're kind of like at a dead end," Johnson said. "We want to try so hard to help but these parents are calling place after place and they can't get in. That just means their kid is going longer and longer without saying their first words."

Johnson said the ideal age to begin intensive ABA therapy is between 2-5 years. Both Johnson and Poe emphasized the importance of reaching kids during this age because this is when their brains are the most elastic.

Brain development is at its peak, making it the easiest time to teach skills. The older a child is, the harder it is to reach them with crucial therapies like ABA. Johnson said it's heartbreaking for parents with non-vocal children who aren't receiving ABA treatment despite when the therapy to teach their child to communicate exists but isn't accessible.

"It's really hard to sit and wait when you know your kid could be getting a service," she said.

Crichigno faced some of this uncertainty when she worked to get her daughter in the ABA program for the first time. She said the doctor's recommendation Hope receive between 7-8 hours of ABA therapy a day was terrifying. The lack of access to programs and lack of knowledge about where to go scared her.

"It's not like we could just go and get that for her," Crichigno said. "What are we going to do if we can't get it?"

Both Crichigno and her husband worked full time. An autistic child who faces the degree of Autism Hope does requires full time care. Both parents didn't know how to give Hope what she needed on their own.

When a graduate student contacted them about Poe's new clinic, they were overwhelmed with gratitude. They sold their house in Preston County and moved to Morgantown. Hope threw herself into her treatment and came out shoving cupcakes down her throat on her own, as well as talking and forming friendships with her student therapists. Most of them have graduated and formed their own clinics. They will also celebrate graduation with Hope.

The day before graduation, Hope does a dry run with her classmates after, the class of 2024 sat for group photos. Hope's teacher reported Hope sat through the practice without issue. Her mother is proud of Hope for wading into the group photo. Crichigno is also thankful for Marion County Schools, who did what they could to support Hope through her journey.

Hope's parents weren't sure if letting Hope sit through graduation with her peers was a good idea at first. Autism can create a black box of communication around a child, it can be difficult to know what they're thinking or feeling. But this might be the only graduation Hope gets. Sarah and Fabio don't want to hold her back.

And thanks to the therapies Hope benefitted from, she was able to clue her parents in on what she wanted.

"She'll look at us randomly and say, 'red hat, red hat,'" Crichigno said. "Things like that. We'll say, 'yes, we're going to wear red hats!' And then she starts combining the words graduation, congratulations — I think she just likes them because they rhyme — and she'll say those over and over again."

Hope is into the cheering now. She walks into a room and looks at Fabio and Sarah, with an expectant look on her face. Her parents comply and announce her full name — Hope Amanda Crichigno — and applaud.

"Congratulations Hopie," Crichigno said. "You did it. You did so well. You made it through high school."

Reach Esteban at efernandez@timeswv.com