Date Published: March 25, 2021
We are celebrating SPARK’s fifth anniversary with stories about the first families who joined.
When Alycia Halladay Ross heard that a huge autism study was launching, she knew she had to join for her daughter, Sarah, and all the other girls with autism.
As an autism researcher herself, she knew that autism research had what some have called “a girl problem.” Many autism studies have had trouble enrolling enough girls, who are outnumbered by boys on the spectrum by about 4 to 1. As a result, researchers sometimes would remove girls from studies if their low numbers would unfairly skew the results.
The SPARK study had announced it would enroll 50,000 people with autism, and their parents and siblings. With that many participants, Halladay Ross knew, SPARK would make it easier for researchers to find and study girls and women on the spectrum.
Her family ― which includes husband Greg Ross and their fraternal twins, Sarah and Jennifer ― was among the first 50 families to join SPARK in 2016. Signing up online was easy, she says. They answered surveys and provided saliva samples for genetic analysis by SPARK. “I’m a researcher who asks people to participate in studies, so when I’m in a position to participate in research, I have to do it,” Halladay Ross explains.
The Road to Autism Diagnosis
But Halladay Ross’s autism expertise did not necessarily prepare her for parenting a child on the autism spectrum.
In fact, it might have worked against her. Some relatives and doctors thought she was “overreacting” when she saw possible signs of autism in Sarah. As a toddler, Sarah did not talk or interact like her twin sister did. Sarah also had meltdowns and obsessive behaviors. But what are the odds that an autism researcher would have a child with autism, let alone a daughter?
Sarah’s pediatrician was not worried. “Sarah was not walking at 20 months, and the doctor looked at her and said, ‘They all learn to walk eventually,'” recalls Halladay Ross, who lives in New Jersey.
But Halladay Ross’s mother convinced her to schedule a developmental evaluation for Sarah. And at age 3, Sarah was diagnosed with autism spectrum disorder. Halladay Ross, who has a doctorate degree in psychology, understood why Sarah received the diagnosis. But as a mother, “I was kind of blindsided by the diagnosis,” she says. “I don’t think anything prepares you for being a parent.”
Some teachers, doctors, and others turn their career focus toward autism after their own child is diagnosed. Halladay Ross began working in autism research during a post-doctoral fellowship at Rutgers University, long before her daughter’s diagnosis. She is now chief science officer at the Autism Science Foundation, a nonprofit that supports research.
The Twins at 10
If you have looked at the SPARK website, you may have seen Halladay Ross’s daughters. Older photos of Sarah and Jennifer, 5-year-old twins with bright smiles, illustrate a few SPARK web pages.
Today, Sarah and Jennifer are 10 and in the fifth grade.
Sarah did learn to walk as a toddler, as her pediatrician predicted. In fact, she now enjoys swimming and dancing. She earns good grades and is taking a class to learn how to program games, such as Minecraft, Halladay Ross says.
Like many children, the twins have been grappling with major changes in schooling caused by the COVID-19 pandemic. Many schools switched to online learning, or to a combination of online and limited in-person classes.
Sarah has flourished with the schedule that her mom has created for learning at home. But Halladay Ross worries that Sarah has become withdrawn without the experience of going to school every day. Jennifer, who does not have autism, misses being around her friends daily. “I would say that the pandemic has actually hit her a lot harder,” she says.
The Pace of Research on Girls and Women with Autism
SPARK has grown, as well. As of 2021, more than 250,000 people have joined SPARK, making it the largest study of autism. Among participants who have autism, at least 22 percent ― more than 25,000 ― are girls and women.
Autism researchers are using SPARK data to investigate sex differences in topics that range from genetics to social experiences in the teen years. Girls and women in SPARK are included in autism studies about special interests, treatments and therapies, depression, and experiences during the pandemic, among others.
Halladay Ross says that she is “thrilled” to see more research into girls. “I am really impressed with the different ways that scientists are looking at girls with autism and how it is changing the understanding of girls on the spectrum,” she says. “I am just overwhelmed with the number of studies that are no longer refusing to include girls.”
Of course, she is not just a researcher. As a mother, she would like to see even more progress. “I don’t think that any parent is satisfied with the pace of research and the pace of services that are being provided as a result of that research,” she says.
Photo courtesy of Alycia Halladay Ross.
- To read summary reports about completed studies involving SPARK participants, see the SPARK Research Match page.