A Journey to Understand Autism, Help Others
Date Published: September 1, 2021
Something was different about Wynston Browne. As a baby, he didn’t babble or push infant toys like his four older brothers and sisters had done at that age. The pictures from his first birthday showed an adorable boy who didn’t point or interact with others.
Within months, his symptoms ― he did not look at, or seem connected to, his family ― felt dramatic and “gut-wrenching,” says his father, David Browne.
His parents quickly got the toddler evaluated. “As parents of five, we have more benchmarks as it relates to milestones of development,” Browne explains. The Connecticut early intervention program diagnosed Wynston with autism when he was about 18 months, and the Yale Child Study Center later confirmed it.
Wynston’s parents began the process of finding, and advocating for, autism services for their youngest child. At first, Wynston did not make a lot of progress in the public early intervention program. His parents enrolled him in private applied behavior analysis therapy for autism. They also tried other therapies to help him with speech delays.
“In the early days, we tried every nutritional and therapeutic intervention,” says Wynston’s mother, Lynda Kommel-Browne.
“‘We don’t want to waste a second’ was our mantra,” her husband agrees. “We gave him as much stimulation, especially around speech and behavior, as we could.”
Everyone who has autism is affected by it differently. Wynston requires the highest level of support, as assessed by a state developmental disability agency, his parents say. Now 14, Wynston communicates by speaking some words, as well as by spelling and typing words.
Researching Autism, Finding SPARK
After Wynston’s diagnosis, Browne and Kommel-Browne joined many autism groups. “We’re on every autism list imaginable,” Browne says. They researched everything from early childhood programs to adult services. Through those efforts, they learned about SPARK, the largest study of autism. SPARK’s mission, to learn more about autism and autism genetics, appealed to them.
“We were wondering what might have happened genetically,” Kommel-Browne says. Did they pass along a gene that contributed to Wynston’s autism? Or, could Wynston have a genetic change that began with him?
The family joined SPARK more than a year ago. Both parents, Wynston, and his teenage brother contributed saliva samples to SPARK for DNA analysis. SPARK looks for changes to a growing list of genes that contribute to autism. If a change to an autism gene is found, SPARK will notify the participant. So far, scientists from SPARK are finding genetic differences in up to 10 percent of those with autism.
“We have not gotten any results back, but we’re glad to volunteer and participate, for the greater good of the tens of thousands of other families who participate,” Browne says. “We view this as a collective journey.”
“The attractiveness to us of SPARK was, first and foremost, the stature, the scale and the scope of the scientific exploration of the root causes of autism and the interplay across the intellectual, developmental, emotional, and social dimensions of autism,” Browne says. He and Kommel-Browne serve on the Community Advisory Council, a group of autistic adults, parents, and professionals who advise SPARK.
Finding a Silver Lining in Closures During the Pandemic
The Browne family’s routines changed dramatically during the COVID-19 pandemic, when many schools, universities, and workplaces closed, at least temporarily, in 2020.
“One of the silver linings of the pandemic was having Wynston home, and all the older siblings home, and David and I working from home,” his mother says. “On his own, Wynston generally prefers to play on the iPad,” she says. But with his family all together, he showed how much he loved doing things with them. He enjoys working out at a gym, playing tennis, shooting dozens of baskets in a row, and just sitting with his parents, brothers, and sisters around him, she says.
“We realized that we had really been underestimating Wynston’s social interests and also his intellectual abilities,” she says.
With Wynston home from school, his parents began teaching him to use a board to spell out words and sentences. He is also learning to communicate by typing. They read books to Wynston, who also enjoys audiobooks. They continue to work on teaching skills of daily living, to increase his independence when he is older.
Browne says people like Wynston, who do not speak fluently, may be misunderstood and underestimated by others. “Expressive communication is something we think can be achieved through alternative modes of communication, and that’s why we’re exploring typing and other modes of expression than spoken language,” he says.
The Career Pivot
In addition to helping Wynston, Kommel-Browne and Browne have pivoted their careers in order to help others in similar circumstances. After many years working on Wall Street, Kommel-Browne helps families plan for the financial future of children who have disabilities. She is certified, or chartered, as a financial analyst, a special needs consultant, and a divorce financial analyst.
“It’s been very rewarding to take whatever knocks you take in life and use what you know to help other people,” she says.
Browne runs a college consulting business that, among other things, helps youth who have disabilities apply to, and transition to, colleges.
Their goal, through their work and their participation in autism research, is to help people with autism “live as full and independent a life as possible,” Browne says.
“We want to lower the barriers to that productive and full life, and then we want to energize the motivation and supports that can enable that full life,” he says.
Photo courtesy of David Browne.