Date Published: August 26, 2022
When John Graham was in elementary school, he did not know anyone with autism, except himself. A teacher showed him a video about autism so he could learn more.
Now, at age 36, Graham has met enough autistic people to know that autism affects each one very differently. “I came to realize that ‘when you’ve met one person with autism, you’ve only met one person with autism,'” says Graham, echoing a quote from Stephen Shore, an autistic professor.
In 2022, Graham learned just how different his own autism is. That is when SPARK, the largest study of autism, told him that it had found the cause of his autism: a rare genetic condition. Like many of SPARK’s almost 300,000 participants, he had submitted a saliva sample for DNA analysis when he joined.
SPARK’s analysis found that Graham has Potocki-Lupski syndrome, one of more than 200 genetic variations that can cause autism. SPARK has found genetic variations in about 1 in 10 SPARK participants. Researchers are looking to uncover even more genes that contribute to autism.
He was surprised to receive the genetic news, but not surprised that his autism varies from someone else’s. “I feel like everyone’s autism is different,” says Graham, a radio producer in Indiana.
Learning the Why of His Autism from SPARK
Graham learned about SPARK from his mother, Janet Graham, several years ago. She had read about SPARK at work, in a company bulletin promoting autism awareness. She was curious about her family’s genetics. She wondered if any future grandchildren might be more likely to have autism, she says.
John joined SPARK, and he invited his parents to register and contribute saliva samples for DNA analysis as well.
DNA sequencing was not available to the Grahams in the 1980s, when John was born and diagnosed with autism. At that time, autism itself was considered rare, with just 1 in 2,000 children diagnosed. By comparison, 1 in 54 children today have autism, according to the U.S. Centers for Disease Control and Prevention.
When he spoke with a genetic counselor through SPARK, John learned that he probably did not inherit Potocki-Lupski syndrome. Although he does not have some of its potential symptoms, such as heart problems, one trait of Potocki-Lupski stood out: hypotonia, or low muscle tone.
“I remember right after John was born, the doctor told us he had hypotonia,” Janet recalls. “He was slow to sit up, crawl, and walk.” Hypotonia is no longer a concern, John adds.
His mother praised the genetic counselor who spoke to the family. “For me, it was very informative. A lot of things fell into place,” she says.
Growing Up with Autism
While growing up, John Graham says, he felt accepted by his classmates. He thrived in high school through his involvement in a radio broadcasting program and the marching band, where he played percussion. Being in the band, with more than 250 people, instruments, and lots of noise, helped bring him outside his “comfort zone,” he says.
He tried college but decided it was not for him. After high school, it was harder to meet people. “Friendships and social things were kind of a big weakness,” he says.
It was the 2000s, and he joined online social media websites that had recently launched. “Around that time, Myspace and Facebook were starting to lift off, without all the political agenda and negativity we see today. That was my medium for online friendships,” Graham says.
But like many people on the spectrum, he found it hard to tell when neurotypical people were telling the truth or being sincere. He made an online friend who turned out to be using him, he says.
At that point, he decided it would be better to meet people “in the real world” rather than online. His mother suggested he attend a local support group for autistic adults. At first, he was reluctant to go because he would miss the season finale of “24,” a popular TV series.
He agreed to attend just part of one meeting, but once he got there, he changed his mind. “There were three young adults like myself that were talking about being on the autism spectrum. I was so in tune to what they had to say that I ended up staying the entire meeting,” he says.
He kept going, and today, he is the facilitator of that autism support group. In 2011, he received the Autism Society of Indiana’s Self-Advocacy award.
Returning to an Earlier Interest, Finding a Career
Graham has worked in a manufacturing plant and for retail stores. But he really wanted a career in radio, the interest he developed in high school. Radio helps connect people, he says.
With input from friends, he formed Radio for a Cause to provide free training in broadcasting and podcasting to people with autism and disabilities. Trainees can gain on-air experience through an online station that he also launched in 2018. Called The Spectrum 23.9, the streaming station has music, Sports Chat, and DJ Andrew’s Variety Mix, among other programs. People can listen online or by downloading The Spectrum 23.9 app from the Apple or Google Play stores, Graham says.
While raising funds for Radio for a Cause, Graham contacted a local radio station to see how much advertising would cost. He ended up getting a free online ad. That contact eventually led him to a job at the radio broadcasting company in 2017. He worked as a remote support engineer before becoming a producer of an AM radio talk show. “I continue to want to move up in the company,” he says.
One day he would like to be an on-air personality, rather than working behind the scenes, he says. “It’s always been a dream of mine to have my own commercial radio station that is run by me and where I’m one of the morning show hosts,” he says.
In the meantime, he continues to work to expand The Spectrum 23.9, which broadcasts 24/7, and Radio for a Cause.
He also enjoys learning about electronics and technology. “I teach myself through trial and error,” he says, adding with a laugh, “as long as it’s something that’s not going to burn the house down.”
Interested in joining SPARK? Here’s what you should know.
Photo provided by John Graham.
- Learn how SPARK participants may get a genetic result in a Genetic Analysis FAQ.