Date Published: July 19, 2019
Jennifer Kelly took her son, Shia, to a specialist because he was having behavior problems at school. But the doctor’s initial diagnosis — attention deficit hyperactivity disorder (ADHD) and depression — “didn’t seem right,” she recalls. So she took Shia, 8, for three days of psychological testing last year. Only then did she learn that he has autism.
“Honestly, I was shocked because I completely missed all the signs,” Kelly says. Until that moment, no one had suggested autism as a possible cause of Shia's challenges. Shia is sensitive to noise, textures, and crowds, and has social difficulties. He is also a good student who enjoys solving puzzles and playing with a Rubik’s Cube.
Kelly was looking for more information on autism when she clicked on a Facebook advertisement for SPARK, the largest study of autism. “I said, ‘Let’s do this! This is something that we should be doing.’” She registered herself and Shia online. SPARK mailed her kits to collect saliva samples for DNA testing, which she did. “The whole process was relatively easy.”
“I’m fairly new to autism, so basically my main priority for signing up for SPARK was to get a better understanding of autism. Was it something genetic? Was it something environmental?” she says.
She lives in a town in northwest Iowa with Shia, daughter Alexis, 15, and son Abel, 3. Her community does not have as many doctors and therapists who specialize in autism, or as many autism programs or resources, as larger cities do. Kelly has had to wait months for an appointment to see a specialist. She often relies upon the internet to connect with other families and learn about autism.
Shia does well academically and does not have an Individualized Education Program at school. A behavioral specialist is helping Jennifer and Shia work on some of his challenges, which include ADHD and anxiety, Kelly says. Many children with autism have anxiety, ADHD, or other conditions, according to research.1,2
Concern about Sensory Challenges in a Younger Son
Kelly is concerned that her youngest son, Abel, has some symptoms like Shia’s, although Abel does not have a diagnosis. “He’s got a lot of the sensory signs,” she says. He has a limited diet and will only eat soft foods. Like his older brother, he will not wear jeans and prefers soft clothing like sweatpants. Kelly cuts tags out of his clothes because they bother him. Abel’s preschool teacher spent months trying to get the three-year-old to paint, Kelly says. Crowded or loud stores bother both brothers. “Both of them don’t like to be in public places, so we spend most of our time at home.”
Kelly helps her sons with their sensory challenges by encouraging them to try foods with different textures and to touch play dough, among other things.
As she learned more about autism, she began to wonder if she, too, fell somewhere along the autism spectrum when she was young. “I didn't have friends when I was growing up. I was not social. I didn't like being out in public places. A lot of the things my son is dealing with, I also did that as a kid."
She was diagnosed with ADHD and behavioral challenges in childhood, she says. “It would not surprise me if they misdiagnosed me as a child." When she was born, milder forms of autism had not yet been added to the diagnostic manual used by American psychiatrists.
Since Shia’s diagnosis, she has heard some misconceptions about autism and its causes that she hopes research will correct. For example, she says, “Some people will tell you that autism is a made-up disorder. That really bothers me when people say that.”
Hearing people repeat myths about autism helps fuel her resolve to participate in SPARK. “If we don't do this research, then no one is ever going to learn anything about it,” she says. “It's not just going to help my family. It will help the whole world.”