Date Published: July 19, 2019
Dylan Robey loves insects, all of them, even the dreaded cockroach. “They’re not dirty. They try to be clean,” the 11-year-old once explained. Like many people with autism, Dylan has what researchers call a special interest, in his case, in bugs. Others might call it a passion for the unappreciated. “He’s a real advocate for the ugly, unloved critters of the world,” says his mother, Dawn Diamond.
Dylan knows a lot about arthropods, a scientific category that includes insects, spiders, and crustaceans. He collects dead bugs that he finds; of course, he would never kill one. And he respects their place in the web of nature. “He’s really interested in the whole web of things, how you can’t take one thing out of the environment, and if you do, it pulls a thread and it all collapses,” Diamond says.
Diamond hopes that autism research will give the world a better appreciation of people like Dylan. That’s why she, husband Matt Robey, and Dylan joined SPARK, the largest study of autism. “Ultimately, what I hope comes from all of this is understanding and acceptance,” Diamond says.
A Journey to Autism Diagnosis
In retrospect, Diamond says, there were signs that Dylan was on the autism spectrum years before his diagnosis. One day, when Dylan was in preschool, she took him for a drive along the route she usually followed to his day care. But they were not going to day care, and she turned right at an intersection where she usually turned left. Dylan became very upset. “He realized the break in the routine,” she says. A symptom of autism is intense discomfort when routines change, or during transitions between places or activities.
Diamond noticed other differences in Dylan’s development. For example, he could put together Lego block sets designed for older children, but he refused to color or draw. He spoke his first word — “anana” for banana — when he was only 7 months old. But he could not tolerate foods of different textures when mixed together, such as in soups and casseroles.
In kindergarten, his teacher began sending him to the principal’s office for disruptive behavior. “It was behavior we had never witnessed in him at home,” Diamond says. “I realized afterward that Dylan had trouble with transitions.” His parents had sensed this intuitively and adopted routines at home for Dylan, she says. But moving from day care to kindergarten was a radical change for him, and “he was troubled by it.”
When Dylan was in first grade, Diamond changed her work schedule so he would not have to go to child care after school. She thought one less change in his day would help.
He continued to have problems at school. “We started to think it was something more than a temporary thing brought on by a big change from day care to attending a real school,” she says.
Diamond convinced school staff to begin testing Dylan for learning problems. Although very smart, Dylan often did not understand his teachers’ instructions and other people’s points of view, at least not right away, Diamond told his teachers. Meanwhile, she made an appointment for Dylan to be evaluated by a specialist in Houston, where they live.
“By the end of the first grade year, everyone agreed he had autism spectrum disorder and nonverbal learning disorder,” she says. The ASD diagnosis did not surprise her, she says. They have a relative with an autism spectrum diagnosis and other family members with some mild symptoms of autism.
Dylan got an Individualized Education Program to help him at school, but he continued to have challenges. When he was in fifth grade, his parents transferred him to a small, private school that focuses on helping children who struggle in traditional classrooms. Dylan is now thriving and learning to work through emotions that used to disrupt his school day, she says.
Learning About Insects and Dinosaurs
At home, Dylan enjoys learning about arthropods. When he was a toddler, sitting on the family’s porch during a warm Texas summer, Diamond would put June bugs (adult beetles) in his hand. “I didn’t want him to be scared of these things,” she says. It worked. Dylan not only doesn’t fear bugs, he also feels concern for them.
“One of the things he particularly loves about arthropods is there are so many of them that people look at and say, ‘Oh gross, kill it!’” But to Dylan, bugs are not pests or invaders. He once told his mother that cockroaches are no different than Pig-Pen, the loveable and chronically dirty boy from the comic strip Peanuts. “Pig-Pen can’t stay clean, but you wouldn’t kill him just because he’s dirty, would you?” Dylan asked her. “I said, ‘Really?’” Diamond recalls. “But he meant it.”
Bugs are not Dylan’s only passion. “He’s also mad for dinosaurs, as most little boys are, and he’s never outgrown it,” she says. As part of a Boy Scout project, he began an email correspondence with a paleontologist who specializes in mosasaurs, a prehistoric marine reptile. “I think it is helping him imagine a future for himself as a scientist or academic,” Diamond says.
Having an intense interest in a topic is a symptom of autism — one that may lead to a career in adulthood, experts say.1 Temple Grandin, Ph.D., who has autism, turned her special interest in animals into a notable career as a scientist and designer of livestock handling facilities around the world.
Dylan is looking forward to studying all dinosaurs. “Large carnivores and maybe also herbivores are very interesting. But really, honestly, I don’t care what I get to study in paleontology. I just hope I mainly study dinosaurs or the giant insects and whatnot that lived back then,” he says. “I also like modern day insects and collect a lot of specimens.”
Not surprisingly, he enjoys visiting the Houston Museum of Natural Science, which has both dinosaur and insect exhibits. “Dylan is practically a docent. He will walk up to complete strangers and give them a spiel about what they’re looking at,” Diamond says.
Science is a Family Affair
His parents also share an interest in science. “Once scientists were able to sequence DNA, we couldn’t wait to see what was coming down the pike,” Diamond says. That’s why they joined SPARK soon after receiving an email about it from the Texas Medical Center. “When I saw SPARK was looking for a broad pool of participants to start investigating some of these potentially inheritable, DNA-based traits, we were thrilled to sign up,” Diamond says.
Matt Robey, Dylan’s dad, says SPARK research could lead to knowledge beyond autism. “By learning more about autism, we can learn more about how every brain works. With regard to autism and my family specifically, I am curious about how much there is a hereditary aspect to my son’s condition, and whether there are others in my family who would themselves be considered to have ASD under the current diagnostic criteria,” he says.
Diamond also has participated in several online studies through SPARK’s research matching program, which pairs interested families with studies they can choose to join. “If you have a kid with autism, you have filled out similar questionnaires and surveys multiple times,” she says. “So that’s not hard or difficult to do.”
Diamond believes that a better understanding of genetics will increase acceptance of people’s differences. “The world needs people with autism, and we need them the way they are. There is room for everybody here,” she says. Autism brings diversity, she adds. “There’s tremendous strength and value in that."