Katie Bevins was watching a familiar scene. Her 13-year-old son Sean was having a meltdown. Because of his autism, Sean feels the need to have his “must have” things — like a Smurf toy and bumble bee lunch bag — in a certain order. If an item is missing, he gets agitated, which can lead to a fit. Sean may throw himself to the ground, kick and bang his head. (And at his size, he was able to kick right through the dry wall one time.)
Parents of autistic children often face scenes like this. The Centers for Disease Control and Prevention say about 1 in 88 children has a condition on the autism spectrum. People with autism have problems communicating and interacting socially. They may have unusual patterns of behavior, interests and activities.
Bevins wanted to share Sean’s outburst with his therapist so she grabbed her phone and started recording. “I feel better using video because it removes misinterpretation,” she says. “And the therapist helped me, too. I learned my stressed out response was adding to the intensity of the meltdown.”
Finding the right tech tools
With the advent of smartphones and tablets and the applications for them, “There’s an app for that” has become a running joke. But there really are apps for some people with autism.
Vicki Clarke is a speech language therapist who speaks about assistive technologies. Her company, Dynamic Therapy Associates, Inc., has a list of more than 300 apps they use for a variety of purposes in therapy.
Clarke notes that people with autism like the predictability of devices like computers and tablets. “The person knows what the computer is going to do,” she says. “For example, clicking the ‘x’ makes the picture go away. Computers respond in an expected manner. This is the opposite of an autistic person’s interactions with people.”
But great tools are only part of the solution. Matching the child and the child’s specific needs with the right tool is the important part. Clarke warns against putting a device or app ahead of the child’s needs. She says it’s too easy to grab the latest device or app and stick it in the hands of a child with autism. She suggests talking to someone like an assistive technology expert first. This could be a speech therapist, occupational therapist or teacher. They’ll all have good insight into what could most help the child.
When Dan Tedesco wanted to find others who could share his experience as a parent of an autistic child, he found it hard to find the community he was looking for. He thought an app might help. As an Aetna employee, Tedesco had an opportunity to participate in a company-sponsored innovation challenge that gave him a chance to develop a new app called “CarePal.” The social tool helps people dealing with various health problems find others in similar situations and willing to share their experiences.
“People become ‘experts’ in managing their care,” says Tedesco. “The person or the caregivers manage everything. First they learn all about the condition. Later they find ways to overcome hurdles to getting care.”
In his case, Tedesco says he wants to “learn from others so I can do better for my son. And I want to share what I know with other people who might be able to benefit.”
Aetna plans to develop CarePal as a pilot program to test.
Learn more about autism support and advocacy.