Autistic student with therapist.

SERVICES IN SHORT SUPPLY

The Denver Post, 7/29/2019

AUTISM

Services in short supply

Colorado among many states dealing with a shortage of providers

BY MEG WINGERTER
THE DENVER POST

Firefly Autism student Noah Buniger, 6, reacts to a word-association exercise with early childhood intervention therapist Amber Verela at the center July 18.
Firefly Autism student Noah Buniger, 6, reacts to a word-association exercise with early childhood intervention therapist Amber Verela at the center July 18. Andy Cross, The Denver Post

It’s challenging for autistic children and their families to find services in Colorado, but not everyone agrees on what supports are needed.

Tamara Buniger, whose 6-year-old son Noah attends Firefly Autism in south Denver, said she felt fortunate that he was able to get a space in a center where he could learn daily living skills such as getting dressed, as well as some of the basics he’ll need in school, such as colors and shapes.

Noah doesn’t speak much, but he is learning to communicate with a device that lets him choose pictures to express his needs.

Students standing in the hallway of Firefly Autism.
Firefly Autism had 167 children on a waiting list as of last week.

“For autism families, the wait-lists can be very frustrating,” Buniger said.

“They do games and they do group play with music,” Buniger said. “It’s all therapy. Even when they sit down to lunch, they’re learning.”

When reporters visited the center on a mid-July morning, Noah was answering questions by pressing pictures on an iPad and matching items that belonged together, such as a chair and table. After he’d answered enough questions to earn a full sheet of sticker tokens, he got to pick a reward — in this case, a stick of jerky.

David Sevick, vice president of marketing and development at Firefly, said the center has children coming from as far as the St. Vrain Valley, Platte Canyon and, in one case, Limon for early intervention or to work on life skills.

The life-skills program teaches older children with severe intellectual disabilities, while the early intervention program is focused on helping kids younger than 7 develop the skills they’ll need to move into school, such as communication, toilet training and interacting with others, he said.

“The focus is to get those kids in and out as soon as possible,” Sevick said.

The number of specialized providers hasn’t kept up with the increasing number of children identified as autistic, either in Colorado or across the country, said Dr. Laura Anthony, a child psychologist at Children’s Hospital Colorado.

Children’s Hospital offers a range of services for kids with complex needs — including speech therapy, mental health treatment and therapy to develop motor skills — but it can’t meet all of the need in the area, she said.

About one out of every 72 children in the Denver area had been diagnosed with autism in 2014, the most recent year with data from the U.S. Centers for Disease Control and Prevention. Data wasn’t available for the rest of the state.

Ideally, most kids would receive any services they need from providers in their communities, but clinics often are full, Anthony said.

“There is generally a waitlist for our services. We wish that weren’t the case,” she said.

More money for services would help, but that’s not the only problem, Anthony said. Many states are dealing with a shortage of providers, and the pipeline hasn’t kept up with increased awareness of autism and need for services, she said.

“Funding would definitely help — it always helps — but it’s only part of the solution,” she said.

Firefly, the center Noah attends, is based in a converted farmhouse and currently works with about 40 kids. They’re planning a move into a vacant school in Lakewood, where they’ll serve about 120 kids when fully staffed, executive director Jesse Ogas said. They already had 167 children on a waiting list as of last week.

Firefly’s model focuses on applied behavioral analysis, or ABA. It’s a method that involves breaking down tasks into steps and coaching kids through them until they no longer need support. It’s not the right method for every child, but there is good evidence that it can help young children learn life and social skills, Anthony said. Not all families are able to get those services before their children turn 3, which is the best time to start that particular therapy, she said.

“The waitlist can be really long for families who need ABA, particularly if they’re trying to go through their insurance,” she said.

Not everyone thinks expanding access to ABA is a good idea.

Laura Anderson, who is autistic and also works with autistic children as a special education teacher in Loveland, said ABA is more about getting kids to comply with adults’ expectations than developing and meeting their own goals.

Some autistic people also find some skills taught — such as making eye contact and not engaging in behaviors like arm-flapping — to be physically painful, and they shouldn’t have to pretend to be typically developing people, she said.

“This is how we are. This is who we are,” she said.

Anderson said many autistic people in Colorado don’t necessarily need autism-specific therapies, but need the neurotypical people they interact with, such as doctors and employers, to learn more about how to support them.

She struggled to find medical providers for trauma and intestinal problems, because many doctors weren’t prepared to care for an autistic person. A former student of hers who needed treatment for suicidal thoughts had an even harder time and had to go to Colorado Springs, because none of the mental health facilities with an open bed closer to home felt prepared to care for someone with autism and a mental illness, she said.

“There’s no reason I should walk into a doctor and be told they can’t help me because I’m autistic,” she said.

Most of the support for autistic adults and older youth is geared toward people with severe intellectual disabilities, who aren’t able to live independently, Anderson said. Providers also may not take into account that many autistic people struggle with planning and carrying out complex sequences of actions, so they can’t jump through hoops to qualify for help, she said.

Many autistic people need help that doesn’t necessarily cost anything, such as allowing them extra time to respond to questions or giving information in a written form, Anderson said. Stores and other places that serve the general public also could make changes such as turning down their music to avoid overstimulation, she said.

“We need smaller day-today changes,” she said.

Meg Wingerter: 303-954-3051, mwingerter@denverpost.com or @MegWingerter