If you have a child with autism, not knowing is the worst: not knowing what their delays mean for their future, not knowing how they’ll experience the world. That unknown makes raising them especially frustrating and bewildering.
At first, my sister Katie didn’t know what was going on with her son Sean. He was a happy and cheerful baby, with bright blue eyes and a stunning mop of red hair. Like his older brother, he was cuddly and quick to smile, but as he approached toddler age, he began to avoid eye contact with the people who loved him most.
Katie struggled to figure out what was going on: sure, kids are active, but Sean hopped around, seemingly more compulsive than playful. Most children like to play with trains, but he focused rigidly on the order of the little cars. If they fell out of line, he’d get upset. He had frequent and intense meltdowns, and she couldn’t figure out the cause. Friends and family tried to assure her when she gave quiet voice to her deepest fears, telling her nervously, “Kids are just different; you just don’t know.”
For more than a year, my sister and her husband traipsed between doctors, looking for a firm diagnosis. When results showed that Sean was on the autism spectrum, a set of unknowns followed: what does this mean for him? What does this mean for the family?
Today, Sean is 12-years-old, and outbursts over the smallest breaks from his routine — like discovering a different juice box in his lunch box — can add tantrums and U-turns back home to the morning commute. Katie is used to the havoc autism can wreak, but she lives with uncertainty, never knowing what may or may not trigger his reactions. She doesn’t know what it’s like to walk in his shoes — the only thing she can count on is unpredictability itself.
Autism remains an often misunderstood condition, but a pair of technology innovations is attempting to narrow the unknowable, help families and create awareness about the mysterious condition — and maybe even shed light into that strange isolation, where Sean retreats from the world and the people who love him.
The Great Unknown
Autism spectrum disorder, or ASD, is the general term for a group of complex disorders of brain development. The Centers for Disease Control reports that one-in-88 children nationwide will show varying degrees of symptoms, including difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. ASD is also often linked to intellectual disability, motor coordination, attention and physical health issues.
The first problem in confronting autism is getting a diagnosis. The most obvious signs tend to emerge between two and three years of age, but there is no blood test for it — it’s diagnosed by observing behavior. For many reasons, either a debate among specialists or confusion over what behaviors and delays are early signs, according to the New York Times, parents find it difficult and frustrating to get a correct diagnosis.
Parents usually notice signs before a child turns two, but the National Center for Biotechnology Information, or NCBI, reports that the average age is more around six. That four-year gap is a big problem, since treatments are more effective at an earlier age.
Phoenix-based Southwest Autism Research and Resource Center, though, aims to shorten the process with an app to let parents record videos of their child’s behavior. It then automatically uploads it to specialists who can flag signs of the disorder. Testing for the “Naturalistic Observation Diagnostic Assessment,” or NODA, app will begin this summer for general release next year.
“Using smartphone apps is a concept that is really gaining a lot of traction in the public health world,” Andy Shih, senior vice president of scientific affairs for Autism Speaks, told the Los Angeles Times. “From that perspective, this particular project is certainly a very welcomed addition.”
Families still need to arrange follow-up treatment plans, but now they can bypass a series of specialists — ranging from pediatricians, psychiatrists, psychologists, speech therapists, physical therapists and occupational therapists — who often give unclear or conflicting information. With technology, parents can shorten the “not knowing” timeframe and put their effort into getting resources and treatment options earlier, when they are more successful.
There is no known cure for autism, but treatments and education approaches — like behavioral, speech and physical therapy, as well as medication — can cut some of the challenges associated with the condition. Kids who receive intervention can lessen disruptive behaviors and learn self-help skills to give them greater independence.
A Game Takes You There
I hear Katie say it all the time: no child chooses to live just a hair-trigger away from chaos. Nobody picks a path of detachment and distance, where they can’t relate to family and friends. Sure, advocacy and support groups give you a place to share your experiences, but in my sister’s case, she’s often bewildered by the way Sean experiences life through the lens of autism. Still, she struggles to see his world from the inside out, to better understand his behavior and responses.
One app, dubbed “Auti-Sim,” is giving a window into that realm by doing the nearly impossible: simulate the sensory overload that’s often experienced by autistic children. Showcased at the Hacking Health event in Vancouver earlier this year, the software isn’t without drawbacks or controversy, but its very development hints at the deep yearning to see an autistic view to better understand problems and improve treatments.
Developers plan to extend Auti-Sim into a full-fledged game, to boost the awareness of autism. Responses range from fascination from those eager to try the game to repulsion from showing a serious disease in a whimsical and inaccurate light.
For example, one mom told the Independent the game caught her eye because she is interested in anything that could better understand and help her daughter, but after using it, she was worried it simplified her daughter’s experience as “freakish or weird.”
I tried a demo, which simulates sensory overload. The scenes are blurry and shifting, and faces around you are eerily blanked out. It feels unsettling: your movements are jarring and jerky and the sounds — of laughter, shrieking and someone reciting the ABCs — swirl around from an unknown origin. It feels mysterious yet oppressive.
I’m not certain this is how Sean feels, but some elements, like the irritating noises, ring true. He gets very agitated in social situations when a lot of people talk, laugh and listen to music. Also, I suppose blank faces represent the often inability of autistic children, including Sean, to correctly read facial expressions for social clues. I found it insightful, yet confusing and irritating. Still, it gave me a glimpse, if inaccurate, of his experiences.
ASD is a broad category, so Auti-Sim can’t possibly represent each experience, but the idea — using technology to develop a better understanding of others and their perspective — is a noble and novel one.
The existence of these apps is helping people like Katie. The uncertain and unpredictable journey called autism is full of deep sorrow, but also unexpected victories. But technology is unraveling many of the mysteries surrounding the disorder, and I’m hopeful it’ll give kids, like Sean, and those who love them, like me, more options to triumph over the unknowns that confound and puzzle them. ♦