Date Published: January 3, 2022
Braxton Webb had held plenty of jobs. He was a U.S. Marine Corps reservist, a truck driver, a security guard, and a deputy correctional officer. But he struggled in some of them, as he had in school when he was growing up.
Finally, Webb, then 33 years old, decided to find out why he had those difficulties. He saw a neuropsychologist, who gave him the answer: he has autism.
In 2021, he got the answer to yet another question: why does he have autism? That answer was unexpected and came from SPARK, the autism research study he joined after his diagnosis.
Now Webb has a new career in mind, one in which he knows he can excel.
Growing Up with Undiagnosed Autism
Although it’s common to diagnose autism in children, some adults, particularly those born before autism was widely known, missed out on a childhood diagnosis.
In Webb’s case, some educators thought he might have autism when he was in elementary school three decades ago. His mother worried that a label would hold him back or discourage him from doing whatever he wanted to do.
But looking back, Webb, 36, wonders if it would have helped him to have an Individualized Education Program (IEP). An IEP provides services for students with learning disabilities. “I was never in special ed. I wish I had been, because I struggled a lot in school academically,” he says. He got a little extra help with reading and speech.
He remembers being a little different from his classmates, although he did not know why at the time. ”I was real quiet, and kind of kept to myself.” He had some of the sensory symptoms of autism. “I could hear sounds that other people didn’t notice. I paid attention to other stuff that people didn’t notice.”
Like many students with autism, whether diagnosed or not, he was also bullied ─ “relentlessly,” he says. Fortunately, the elementary school principal, who knew his mother, put a stop to it.
As a preteen, he became interested in computers. His mother would sometimes take him to work with her on the weekend, and he learned about the computer system there. When she had a problem with her work computer, she would call him for advice on how to fix it, he recalls.
By his teen years, Webb’s self-taught computer skills had advanced to the point that he hooked up the internet system at his high school. “The only thing I didn’t do was the electrical work,” he says.
After high school, he joined the Marine Corps Reserves in Wisconsin, where he lives. He then held a series of jobs, many involving the transportation industry. He drove 18-wheelers and motor coaches, and was a ramp agent for an airline. He also worked as a security guard. Eventually he landed what he thought would be his dream job: he joined a sheriff’s department.
He became interested in law enforcement as a child after a good experience with police. When he was about 3, he left the home of an inattentive babysitter and boarded a bus. Police were called, and they made sure he got home safely.
His first assignment in the sheriff’s department was as a jail officer. There, he struggled with the loud noise, the need to multitask, and other issues working in a jail. Those struggles, and the loss of that job, caused him to see a neuropsychologist for answers. By then, he had begun to learn about autism spectrum disorder (ASD), so he was not surprised by the eventual diagnosis. “I looked up my symptoms online, and it kept coming up as autism,” he says.
An Email from SPARK Brings Surprising News
After his diagnosis, he joined SPARK, the largest study of autism, after learning about it online. He submitted a saliva sample for DNA analysis by SPARK researchers. But he did not expect it to lead to anything. Then, in 2021, he received an email from SPARK saying that it had found the reason for his autism. “It was surprising,” he recalls.
He learned from a genetic counselor that he has a rare change to his DYRK1A gene on chromosome 21. Most of the people with a change to this gene have autistic-like behaviors or autism. Symptoms of DYRK1A syndrome often include speech, learning, vision, motor, or feeding problems; a smaller than average head size; and seizures, according to research.1
Webb does not have some of the features of this syndrome, but this is not surprising. SPARK Scientific Director Pamela Feliciano, Ph.D., says, “By analyzing tens of thousands of people along the entire spectrum, SPARK is identifying people with rare genetic changes who may have fewer, different, or milder symptoms than previously observed with that particular genetic condition. We are sequencing the DNA of everyone with ASD who provides a saliva sample, not just individuals who may have more severe symptoms.”
Webb joined SPARK’s sister program, Simons Searchlight, which studies more than 170 genes that cause rare neurodevelopmental conditions. He is among more than 50 people with a DYRK1A change who have registered. Simons Searchlight tracks participants’ health and development over time to help learn more about these genetic conditions. It also connects participants to researchers studying their condition.
Webb joined the private Simons Searchlight DYRK1A Facebook group. It has more than 120 members, many of them the parents of children with the condition. They had questions for Webb, he says, and “I had tons of questions for them.”
He also informed his doctor about the genetic diagnosis.
A New Career Path Unfolds
Even before his autism diagnosis, Webb had been working at a school and residential treatment center for students with autism and developmental conditions. During his five years there, he learned a lot about autism. “When I first started working at the center, it was just a job. But as I worked there more and more, I really enjoyed the work.”
Now he works at another treatment center, and also as a direct support professional providing care for children with autism in their homes.
And he has a new dream. “My goal is to open up a child care center for kids with autism. In my area, they don’t have any. A lot of people in the child care industry don’t want to have that clientele because of the difficulty.”
But to Webb, this is the next step on his journey. In fact, he has already picked out a name and logo for the center he hopes to open.
Interested in joining SPARK? Here’s what you should know.
Photo provided by Braxton Webb.
Simon Searchlight’s DYRK1A information.
- van Bon B.W.M. et al. GeneReviews (2021) PubMed