Finding their voices
Fueled by a $34.7 million grant, University of Minnesota experts aim to discover better ways to support nonverbal and minimally verbal autistic children
By the time her son, Aidan, celebrated his first birthday, Feroza Mehta had already learned that parenthood is equal parts boundless wonder and quiet anxiety.
Some of that anxiety stemmed from Aidan’s growing list of concerning behaviors: He had severe acid reflux, seemingly cried all the time, missed developmental milestones like sitting and crawling and had a peculiar tendency to line up and spin objects. Feroza and her husband, Rohaan, began to wonder if their son might be autistic.
After the birth of their daughter, Ava — who Feroza Mehta says was a much easier baby by comparison — Aidan was diagnosed with autism, requiring substantial support in daily life. He was 4 years old.
“When your baby is born, you have these hopes and dreams for them,” Mehta says. “Then you get this type of diagnosis and you worry those hopes and dreams won’t be fulfilled. On the other side of the coin is [wondering] how is society going to treat them?”
The Mehtas immediately set out to find the best support and care for their son, a search that led them to the University of Minnesota and Amy Esler, PhD, a licensed psychologist and professor in the Medical School’s Department of Pediatrics.
The right track
For families affected by autism, a diagnosis is only the beginning. The question of what is replaced by questions of how: How will my child communicate? How will they navigate school? And how will they be cared for long term?
For nearly 14 years, Esler and colleagues in the Medical School have helped the Mehta family answer those questions. She has been a steady guide through an overwhelming maze of therapies, school services and medical decisions, Feroza Mehta says.
Aidan was enrolled in a therapy called applied behavior analysis, which helped him learn how to read, calm himself, brush his teeth, tolerate clothing, wash his face and take turns in games — tasks that had previously been difficult.
As Aidan grew older, his parents realized he had minimal verbal communication skills, so Esler also recommended occupational and speech therapies and connected the family with a social worker for ongoing support.
Feroza Mehta says Esler’s support has changed her family’s life immeasurably.
“She was so patient and kind with us,” Mehta says. “[Even early on] she assured us we were on the right track.”
Close the gap
As Aidan’s care continued through the years, he started receiving support at the University’s Masonic Institute for the Developing Brain (MIDB), which opened in 2021. The MIDB is a first-of-its-kind place where brain science, clinical expertise and the lived experiences of families come together to ensure healthy brain development and support families like the Mehtas.
Approximately 25-30% of autistic children are minimally verbal or nonverbal, but they are included in only 2-4% of autism research. Historically, many autism studies have focused on children who can participate in traditional assessments and research protocols, leaving minimally verbal and nonverbal children underrepresented.
“There are always kids with autism who, despite having access to early intervention, just don’t learn to talk,” Esler explains. “They could get the same interventions, at the same age as another kid, and, for whatever reason, just not develop speech.”
Now, with the support of a $34.7 million grant from Aligning Research to Impact Autism (ARIA), MIDB researchers are transforming our understanding of brain development for autistic kids who are nonverbal or minimally verbal — kids like Aidan.
“The goal of this project is to close a gap in research that has persisted for decades, a gap that has limited our ability to design interventions that are rooted in neurobiology,” says Meghan Swanson, PhD, an associate professor of pediatrics at the University of Minnesota and the principal investigator and director of the grant-funded Project MAPLE, which stands for Mapping Autism with Precision in Language and Expression.
For many of these children, communicating basic needs, emotions and experiences can be difficult, creating challenges not only for the child but also for the family supporting them.
“We really want to understand brain development in these children. We think by doing that, we can reveal the mechanisms that are contributing to challenges with communication,” Swanson says. “But equally as important, we’re hoping to develop tools that will allow us to sensitively detect when an intervention is working.”
Project MAPLE will use advanced brain imaging technology at the University of Minnesota Center for Magnetic Resonance Research to map communication patterns in young children’s brains. These patterns could then help experts predict which children are more likely to have communication challenges as they grow — and use that information to develop tailored treatment, support and intervention approaches for each child.
Esler says families who enroll in Project MAPLE will not only be helping push science forward, they’ll be receiving holistic support based on the best of today’s research.
“We’re offering updated clinical assessments families can use to access services, behavioral support when kids are struggling and guidance through an incredibly complex system,” Esler says. “For families who are often isolated and under enormous stress trying to find services, it feels meaningful to be doing research that gives something tangible back to them right now.”
‘Understood and appreciated’
With support from Minnesota Masonic Charities, Swanson was recruited to the University of Minnesota to join the MIDB team in 2023. She did so with ambitious research initiatives like Project MAPLE in mind. An endeavor like this requires extensive collaboration and cohesion among different experts, Swanson says, ingredients that aren’t available everywhere.
“This project could only happen here,” Swanson says. “It really felt like the stars aligned because the MIDB exists and because there are people like Amy Esler, amazing developmental cognitive neuroscientists like Jed Elison, PhD, and Damien Fair, PhD, and world-class imaging technology, all in one building.”
Ultimately, Swanson says, this research is about tailoring support to each individual child and family, so that they can thrive.
For Feroza Mehta, thriving has meant more than understanding her son; it’s meant understanding herself, too. Through Aidan’s autism journey, Mehta learned she herself has autism, something she likely wouldn’t have realized without comprehensive research on the differences in autism in men and women.
“The purpose of life is to find what you like doing and use that to help others,” Mehta says. “What I like doing is educating people about autism.”
Today, Aidan is a caring, family‐oriented teen who is beginning to imagine his own future. Inspired by the longtime aide who supported him in school, he now dreams of becoming a paraprofessional himself. Mehta says watching Aidan grow has allowed her to see autism not solely through the lens of challenges, but also through the lens of possibility.
She’s thrilled that MIDB experts are embarking on Project MAPLE, as she’s seen firsthand the impact tailored support services can have on a family like hers.
“I don’t think autism should be seen as a condition that needs to be cured. It’s something we’re born with,” Mehta says. “It needs to be understood and appreciated. And that’s why research is so integral. It allows us to understand what exactly autism is and to teach the world about it.”
