Marina Sarris

Date Published: June 4, 2025

Sharman Ober-Reynolds really did not expect the news she got from the SPARK autism study. When her family joined in 2017, she knew that there was a chance that researchers would find a genetic cause for her son’s autism. But she doesn’t have autism: why would SPARK have genetic news for her?

SPARK analyzed the saliva samples that the family submitted and learned that both Sharman and son Andrew have the same variation in an autism gene.

Andrew, who is 35, inherited a change in the NLGN3 gene from his mother. The gene variation, which is on the X chromosome, does not affect Sharman. Women are less often affected by gene variants on the X chromosome. That is because, unlike males, they have a second X chromosome that can offset the variants on the first X.

“I never expected that I would be the carrier,” says Sharman, a bit of astonishment still in her voice. No one on her side of the family, other than Andrew, has autism. She assumed that if Andrew inherited an autism variant, it would come from his father. Her husband, Steven Reynolds, does not have autism but has relatives who do.

Andrew took the news in stride. He told his mother, “It’s not your fault, it’s not my fault, and it’s not a tragedy.” He is not concerned about what caused his autism. Instead, he is more interested in what can be done to improve the lives of autistic adults, he says. Like many such adults in SPARK, he has had trouble finding a job in the past. Adults need housing, jobs, and other services, he and his mother say.

First-Born Son

Andrew is the oldest of the three sons of Sharman and Steven. He arrived in 1990, at the beginning of a decade that saw an increase in autism diagnoses. American psychiatrists expanded the definition of autism during the late 1980s and 1990s to include people with milder traits.

A late talker, Andrew was diagnosed at age 2. Despite the early diagnosis, he did not receive the early intervention services that typically follow such news. Arizona’s intervention program decided that Andrew was not eligible for help, his mother says. Autism was recognized as a separate diagnosis for special education purposes only two years earlier.

His parents filled the gap in services. They traveled from time to time to the Koegel Autism Center at University of California Santa Barbara, where they learned how to provide Pivotal Response Treatment,¹ an evidence-based form of behavioral therapy.

Andrew received a special education plan at age 6, but his family continued to step in when the school did not meet his needs. When he was 9, they paid for a graduate student from the Koegel Autism Center to train his school aide on how to work with him.

They stepped in again when Andrew required help with social communication skills, a common need among autistic children. Andrew ate lunch alone. On the playground, he wandered around the perimeter by himself.

So Sharman created a social skills program for him and some of his classmates. She and Steven spoke to his fourth grade class about autism and how they could be helpful to Andrew. They asked for volunteers to join a lunch group that Sharman was going to lead. She brought pizza and organized games once a week with this “lunch bunch.”

Sharman is a co-author of a book about helping children like Andrew, “The FRIEND Program for Creating Supportive Peer Networks for Students with Social Challenges, including Autism.”

Sharman advocated for Andrew to learn in the same classroom as his typically developing peers. She once hired a lawyer to help when the school wanted to assign Andrew to a special education-only classroom. Sharman preferred that Andrew learn and play with students who reflected the community he would be living in and working in as an adult.

Andrew’s voice – his singing voice – also created social opportunities for him. He sang in school choirs and the Phoenix Children’s Chorus. “Because of his talent with music, that’s where he connected best with his peers,” she says.

The Intersection of Professional and Personal Experiences

Sharman felt confident in her advocacy for her son, in part because of her career. She was a nurse practitioner who worked in autism research after her son’s diagnosis.

She helped run clinical trials at the nonprofit Southwest Autism Research & Resource Center (SARRC) in Arizona when Andrew was growing up. Years later, after a move, she did assessments for the University of Utah’s Development Assessment Clinics before retiring. Both SARRC and University of Utah have partnered with SPARK.

Sharman learned about SPARK at work. When she received her own genetic results, she invited Andrew’s brother, a doctor, to join her call with a SPARK geneticist. Andrew’s brothers do not have autism, and they did not inherit the variant.

A Rare Variation in a Single Gene

Scientists have linked variations in more than 400 genes to autism. NLGN3-related syndrome is among the rarest of them. As of 2022, researchers had documented about 39 people, mostly boys and men, with the condition, according to Simons Searchlight. Simons Searchlight is a research program for people who have variations in genes that contribute to autism and other neurodevelopmental conditions.

Andrew has some common autism traits, but some of his strengths and challenges differ from others with autism. He struggles with visual spatial skills, which are often a strength for autistic people. Identifying the pattern on dice or putting cans in the right place on a shelf can be harder for him, Sharman says.

But his strengths include verbal communication, which is a challenge for many on the autism spectrum. “He doesn’t always want to engage socially, but he’s got really good verbal skills when he is inclined to connect with people,” his mother says. Andrew organizes a regular video call with his parents, two brothers, his sister-in-law, one brother’s girlfriend, and a friend every week.

He works part-time as a clerk at a supermarket and lives in a basement apartment in his parents’ house. “We’re lucky that he can live with us, but so many families don’t have that opportunity. There does need to be a lot more recognition of the needs of adults, especially housing,” Sharman says.

Many autistic adults are on long waiting lists for adult disability services, including day programs, job services, housing, and personal supports. Meanwhile, their parents are getting older and wondering who will help their adult children when they can no longer do so.

Sharman hopes that studies like SPARK can help. “We need research that will translate into better services for adults,” she says.

Photo of Andrew provided by Sharman Ober-Reynolds. Background photo: iStock.

Interested in joining SPARK? Here’s what you should know.

References

1. Lei J. and P. Ventola Neuropsychiatr. Dis. Treat. 13, 1613-1626 (2017) PubMed