Marina Sarris

Date Published: December 17, 2024

Julia McGuire suspected her daughter, Magnolia, had autism when she was only 8 months old. By the time Magnolia was 1, Julia was convinced of it, even if doctors weren’t so sure.

Magnolia did not like to cuddle or play with other children, and was slow to crawl, walk, and talk. “Oh, she’s just a pandemic baby,” one doctor told Julia, dismissing her concerns.

But Julia was right: Magnolia was diagnosed with autism at 26 months, about two years earlier than the average age at which girls are diagnosed.

How could Julia be so sure? Julia knew more about autism than a typical new mom because she is autistic herself.

Wanting to contribute to what we know about autism, Julia, husband Montana, and Magnolia joined the SPARK autism research study a year ago. Montana and Julia hope that their daughter will grow up in a world that is more accepting and knowledgeable about autism than they did.

Diagnosed During the Autism Boom of the 1990s

Julia was first diagnosed with autism 30 years ago, when she was 3. It was around the time that autism diagnoses began surging, in part due to greater awareness and changes in how autism was defined. “I was the kid in the special education preschool who was rocking back and forth so much I would shake the whole table,” she says.

During her childhood, her diagnosis was changed to ADHD and anxiety, because autism was considered mostly a condition of boys, she says. Autism affects more boys than girls, but some researchers believe that girls may be underdiagnosed because of misperceptions and differences in how their autism appears.

“My mom was fighting for the autism diagnosis, but we just didn’t have the money for a private psychologist,” says Julia. She eventually saw a specialist, who diagnosed her with autism when she was 18.

Julia received special education services through high school. When her family moved from New York state to Georgia, she was assigned to a school for teens with disciplinary problems, even though she did not have those problems, she says. “There were kids there who might bring a knife to school,” she says. “I fell through the cracks in the school system.”

Despite those troubles, she managed to make a few friends in high school and college. “My brain works differently, and I learn differently too,” she says. “It was difficult finding friends, but I always had one good friend. As I’ve grown up, I’ve learned that you can have a bunch of friends, or you can have those few friends who really accept you for who you are. You could have a meltdown, and they won’t judge you for it.”

Meltdowns are outbursts of yelling, crying, or other behaviors that autistic people may have when they feel overwhelmed by sensory experiences or changes in routines.

Growing up, Julia was very sensitive to noise, which affects 50 to 70 percent of autistic people at some point in their lives. “They didn’t really have noise-canceling headphones then like they do now. My mom brought us to Disney World when I was 13, and I had a full-blown meltdown, with screaming,” she recalls.

Daughter Magnolia pipes up when she hears mention of “Disney World.” “I want to go to Disney World!” she announces.

“When you’re 6 or 7, we’ll take you to Disney World,” Julia replies. “No, 4, 4,” insists Magnolia. She happens to be 4.

Magnolia’s Story

Magnolia is a spunky child who attends a preschool autism program. She works hard to manage her sensory sensitivities and behavior during the day, but she can have meltdowns when she comes home from school, Julia says. One researcher who studies autism in girls has called this experience the “4 o’clock explosion,” when children release all their stress from a school day spent hiding their autism traits.

Thanks to her parents’ advocacy, Magnolia began receiving therapies, including help for speech, motor skills, and behavior, when she was 10 months old. That is earlier than most children on the spectrum.

In fact, Julia first took Magnolia to their local early intervention office when her daughter was 7 months old. The specialists said Magnolia’s developmental delays were not large enough for her to receive their free therapies.

Julia did not give up. Two months later, she took Magnolia right back to the office. This time her daughter qualified for therapies. Research shows that early intervention can help youngsters gain developmental skills, so they can reach their potential.

The McGuires hope that Magnolia has a better school experience than they did.

A Childhood Misunderstood

Montana, 31, says he was diagnosed with ADHD as a child, and he believes his autism was missed early on. “It was hard growing up. I lived in Nebraska. I don’t think they understood what autism was at that time period.” As a result, he often did not get the support he needed.

As a child, he got into trouble because he did not understand emotions. He would not react the way other people thought was appropriate to sad news, for example. He also didn’t understand the social cues that his classmates did. In high school, girls would flirt with him, but he did not realize what they were doing until his friends told him. “The girls would get mad because I didn’t understand what they were trying to say,” he says.

Like many autistic adults, Montana has special interests. “To this day, there are certain things I get really obsessed with, like pets,” he says. The family has a Golden Retriever dog, two cats, and 14 fish in a 70-gallon fish tank. Montana creates content for his YouTube and TikTok channels, and other social media.

Looking to Research for the “Whys” of Autism

The family, who lives in New York state, made SPARK part of their autism journey. They joined and provided saliva samples for DNA analysis by SPARK researchers. But they already knew that Julia and Magnolia both have a variation in the SCN8A gene. That gene has been linked to autism, but their particular variation is “of unknown significance,” according to previous genetic testing, Julia says. That means scientists don’t know yet if their variation contributes to autism.

The McGuires want to know more about the sleep and sensory problems that affect all of them, along with many other autistic children and adults. Montana finds it hard to fall asleep without the supplement melatonin. “It’s very hard to shut my brain down. It’s like the OFF switch is broken,” he explains.

Julia also wonders why some autistic children do not speak. “I know a bunch of kids who are not verbal — they are bright as day — but they just can’t say what they need to say. So, it’s interesting to me, the why behind this.” They hope that SPARK research can help answer those questions.

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

Photo credit: Scott DeFillippo for SPARK.