For young kids with autism, the recommendation can be to attend as many as 30 to 40 hours a week of applied behavior analysis therapy.
Kelle Wood Rich, executive director of the Central Texas Autism Center, knew that when the coronavirus began to hit the United States and we were heading toward stay-at-home orders, the center would have to rethink the work it was doing and how it could meet the needs of families from a safe distance.
Rich opened the center in 2004 after she had been going into family homes to do ABA therapy as well as traveling the country training facilitators to do the therapy.
At the time in Austin, there were folks who were doing ABA, but they would come to individual homes, which would require parents to either hire babysitters or to not work if their children were going to have 30 to 40 hours a week of therapy in their home.
“It was a full-time job to have people in their home,” Rich says.
Instead, the center she opened became a place where families could take their children during the day while they worked.
“We wanted to have a central location, to have a center of excellence to be available to more families,” she says.
It was a paradigm shift, but it was welcome, Rich says.
Therapy has come a long way for kids with autism since Rich opened the center. Now 95% of the therapy the center provides is covered by insurance. In fact, it’s now mandated by the state of Texas that insurance cover therapy for autism.
Pediatricians are also better trained to diagnose autism earlier and to not wait for a specialist before referring kids for therapy.
The center and Rich are not without their critics, including a Texas Child Protective Services investigation of an incident by a Lake Travis School District employee trained by the center that was later dismissed.
“This complaint was thoroughly investigated and all allegations were ruled out," Rich says.
Today the center regularly serves 75 to 80 clients and their families with different levels of therapy, ranging from four hours a week to 40 hours a week and from individual to group therapy.
After 16 years of growing the center, Rich and her therapists headed back into families’ homes, this time virtually.
By March 18, the center had physically closed and began offering telemedicine visits. The first week, 30% of the families attended sessions; by the next week, 50% attended. Now all but two families have joined therapy virtually. The center has also been able to add families and do assessments during this time.
It has been a surprise how well families and their children have adjusted to this platform, Rich says.
Because autism is a spectrum, some kids only spent 10 to 15 minutes the first time just getting used to the platform, but they have been able to add more and more time doing telemedicine sessions as the kids have gotten more comfortable.
Other kids were able to jump right in.
Each session begins with a parent check-in, and sometimes the parents need to be there the whole time to assist with the therapy appointment.
Therapists also give a lot of instruction on how to use this platform and what buttons to push, as well as what the rules are.
“Some kids surprised us,” Rich says. “It’s like they have done this all their life.”
Some have said some funny things like, “Why are you in my house?” or, “I don’t want to see you on the screen; I want to see you in person.”
“The hard part is we can’t reach out and give tickles,” she says. “It never takes the place of face-to-face and human connection, but the continuity of services are so important.”
Something that Rich and her therapists are really recommending for the families they serve is to create a schedule for every day.
Kids, especially kids on the autism spectrum, like to have a routine and consistency.
“Have some sort of semblance of normalcy,” Rich says, including when they go to bed and what time they wake up.
“We talk to parents about scheduling breaks. ... Have exercise on the schedule, and play and fun time,” she says.
For families that have kids with high needs that require parents to be more hands-on, therapists are talking about taking time for self-care and figuring out how to manage kids’ needs, work needs, kids’ therapy and their own self-care.
They help them think through their whole day to figure out the best times to get it all done.
“We’re providing them with a lot of other resources,” Rich says, like the number of zoos and museums that have virtual tours, as well as resources that are on the Autism Speaks website and the Autism Society of Texas website.
For older clients, the center’s therapists are working with 10 different school districts to figure out how to best support their families during this time.
“Most of them are trying to figure it out and do the right thing,” she says of the school districts.
It wasn’t just the patient program that had to change. Every year the center hosts a large educational conference to train facilitators in ABA. It was scheduled for April 2-3 with 500 people attending. This year everything was done virtually, which meant they had people from Australia, Russia and Myanmar who wouldn’t have attended in-person. Now Rich is hoping that next year the conference can be in-person but also livestreamed to reach more people.
That conference and the experience of running virtual therapy has made Rich think about new possibilities of bringing the center’s programs to kids who don’t have access to them currently.
Even though there was trepidation about how this would work, Rich says, “We are so intrinsically motivated, and that comes from seeing the kids doing so well.”