Christine Wu Nordahl, doing whatever it takes to get good data

It’s a September day in 2022, and Christine Wu Nordahl is holding a crying baby boy inside the MIND Institute at the University of California, Davis. The baby’s older sister, a 4-year-old autistic girl, is there for a behavioral diagnostic assessment, and her mother is nearby, helping to keep her calm and quiet. Nordahl’s lab assistant was supposed to watch the baby during the assessment, but he doesn’t know all that much about babies, especially crying ones. Nordahl, sensing an impending crisis, grabs the child and tells the lab assistant to pull up some baby videos and hand over his phone.

And that’s how Nordahl ended up sitting on the floor entertaining someone else’s baby for 90 minutes. “You do what it takes to get good data,” Nordahl says.

Nordahl first joined the MIND Institute, a research and care center focused on autism and other neurodevelopmental conditions, as a postdoctoral researcher in 2004. Back then, young children or those with limited communication abilities were usually sedated during scans or excluded from imaging work entirely. Her adviser, David Amaral, tasked her with devising a way to include those children, without sedation. To do this, her people skills have proved to be every bit as important as her talent as a researcher.

In the roughly 20 years since she joined, Nordahl has risen to become director of the Autism Phenome Project and, in August 2022, the Beneto Foundation Endowed Chair, which is endowed by one of the MIND Institute’s founding families. She has also amassed the largest longitudinal imaging study of autistic children in the world. “She has been a force for pretty dramatic change,” says MIND Institute director Len Abbeduto.

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ordahl was born in University Park, Pennsylvania, in 1974, the second child and only daughter of Taiwanese immigrants who had independently moved to the United States to pursue graduate degrees and ended up at Pennsylvania State University. The family moved to Arnold, Maryland, a town of about 25,000 people, when Nordahl was 2.

Nordahl grew up watching her parents navigate a culture and language that were not their own. She remembers, for example, when her mother once took her to the pediatrician and came home confused about the doctor’s request to see their kitchen chair — he had asked for a stool sample. Today Nordahl says she realizes her parents were, in a sense, doing what some autistic people do daily: masking behaviors in order to fit in. She knows it is not a direct comparison, but she sees similarities to her parents trying to figure out a world that isn’t “how you see it and how you’ve learned about it.”

The family had a piano, and Nordahl took lessons and competed through her teenage years. She was one of a handful of Asian students in her high school class. Her classmates were amicable and the teachers well intentioned, but there were still frequent reminders that she was an outsider. Partly in response to this, in high school she started a chapter of Amnesty International, to look out for others who needed help. But she found the demands of activism at odds with her own introversion. “I’m very conflict avoidant,” she says. “I don’t like to raise attention.”

She decided to study the brain in college. She applied to Binghamton University and Colgate University purely because she had heard upstate New York was pretty, adding Cornell University to the list only after a friend encouraged her to try for a higher-profile school. She was accepted there and signed up to major in neurobiology and behavior.

She was surprised when she had to take an animal behavior class. “I was like, ‘Why am I learning about honeybees and blue-footed boobies and their mating dances?’” she says. But the class showed her that neuronal activity leads to behavior. Nordahl had stumbled upon psychology.

As an undergraduate, she studied lead exposure in rats, and how 3-month-old human infants learn to reach for objects. In her final year, she took the Graduate Record Examination (GRE) and wrote an honors thesis on her rat work, but she was “thoroughly burnt out” when she graduated from college with a double major in neurobiology and behavior, and psychology, she says, so instead of applying to graduate school she joined Volunteers Exchange International and moved to Costa Rica. She was placed in an office where no one else spoke English, and Nordahl did not speak Spanish, so she struggled. But the organization eventually switched her to an English-language radio station, and she settled in.

She met her future husband in Costa Rica, a fellow volunteer named Blake Nordahl, an undergraduate student at the University of California, Berkeley. Blake was scheduled to return to Berkeley after his stint in Costa Rica, and Nordahl herself was already considering graduate school and a relocation to California. They charted a move back to the United States together.

Once there, she took a job as a research assistant in a Stanford University lab while she considered graduate programs. One night, Blake invited Nordahl to dinner with his father — a psychiatry professor at UC Davis — at the (now-defunct) century-old fish restaurant Spenger’s, blocks from the Berkeley Marina. During the meal, Nordahl mentioned her dissatisfaction with her job. The elder Nordahl, she recalls, grabbed a sugar packet and jotted down two names: Bill Jagust at UC Davis and Bob Knight at UC Berkeley. Nordahl went with Jagust, and she left her research position a year early to start her graduate degree in neuroscience at UC Davis.

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ordahl’s program required her to rotate through several labs before settling on one, and she first spent time with Amaral, who had just been named research director of the newly formed Medical Investigation of Neurodevelopmental Disorders Institute, commonly referred to as the MIND Institute. He was putting together the first collection of postmortem brains from autistic people, and Nordahl remembers standing nearby as Amaral sectioned one of the brains for the first time in his lab. She never forgot this, she says, and though she ended up working with Jagust and studying Alzheimer’s disease and aging for her graduate work, she kept in touch with Amaral. When she graduated in 2004, Amaral was about to start an ambitious brain imaging project, and Nordahl decided she wanted to be his postdoctoral researcher.

The MIND Institute was in the process of launching its flagship Autism Phenome Project (APP), which aimed to scan the brains of babies and young children, and follow them as they grew. The program was meant to be inclusive, scanning young autistic children and those with intellectual disability or with little or no communication. Especially because the study was intended to be longitudinal, sedating these children several times over the years was not an option, Amaral says. He gave Nordahl the challenge of figuring out how to get the participants scanned “without sedation, without anesthesia.”

She wondered if it could be done. The initial idea was to scan the youngest children at night, during natural sleep, but getting children to sleep in a scanner seemed like a big ask. Nordahl called Sally Rogers, a leader in the field of behavior therapy for autistic children and professor emeritus in the Department of Psychiatry and Behavioral Sciences at UC Davis, who suggested setting up the machine so that parents could lie down alongside their children.

But the process didn’t really come together until Nordahl gave birth to her daughter, Clara, in 2005 — an event that enabled her to better relate to parents and build trust, she says. Two or three nights a week, she put Clara to bed and drove 20 minutes to the MIND Institute in Sacramento to sit with families for hours. She even had Clara scanned as a control in the APP. And when her son, Ryan, was born, she had him scanned, too, as a sibling to a control. “I wouldn’t ask them to do anything to their kid I wouldn’t do to my kid,” she says.

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he MIND Institute has its roots in parental advocacy. In 1997, six families with autistic children came together in the hopes of establishing a central place for treatment. They raised money, convinced UC Davis to house the institute, and opened it in 2003. Because of those origins, the culture of the institute was embedded with a kind of “pathologizing language,” and its ethos carried the whiff of seeking a “cure,” says Abbeduto, who came to UC Davis in 2011.

Nordahl was key to overthrowing that, he says. She started a journal club and later seeded it with articles on the neurodiversity movement, and she arranged for autistic advocates to present to the MIND Institute on respectful language. “People of my generation, scientists of my generation, sometimes have a harder time recognizing that language matters,” Abbeduto says. Nordahl, in her nonconfrontational way, showed people the value of honoring neurodiverse perspectives and helped change “how we think about what our role as scientists are,” he says.

Nordahl similarly recentered the tone of the APP. Historically, Abbeduto says, science has been seen as extractive – the job of a researcher is to get data on “subjects” and “cases.” In the APP, however, Nordahl shows the families they are “as valuable to this project” as the researchers, he says, and she “creates a partnership.”

In the early-childhood phase of the APP, scans occurred at ages 2 to 3, then again at 3 to 4, and 4 to 5. At these three timepoints, the method was much the same: The children were scanned at night while they slept. To help set the nocturnal scene and make the room feel less clinical, Nordahl and her group outfitted a mock scanning room with dark sheets covered in felt stars, and a moon to mimic a night sky. When it was time for the real scan, the lab team set up the same decorations in the actual scanning room and filled it with items unique to each child — stuffed animals, favorite books, and familiar sounds and smells.

Scanning the children aged 9 to 13, for the middle childhood phase of the study, is different. These children are awake and are coached on holding their head completely still. One summer, a child wanted to listen to a Kenny Rogers Christmas album over and over. There was a girl who needed everything to smell like lavender, her mother said.

“The scan is always secondary to the participant having a good time,” says Kali Kecskemeti, a study coordinator for the APP.

That attitude has been key. Longitudinal data are achieved only if the families and children return again and again. So far that has mostly happened.

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lmost every morning, Nordahl takes a walk along the American River in the Effie Yeaw Nature Center in Carmichael, California. There are deer grazing along the path. In the fall, salmon leap out of the current on their way upstream. She and Blake live nearby. Their backyard has cherry and almond trees, nectarines and peaches, Meyer lemons and persimmons. The next yard over has horses.

Over the decades they have added rooms; now the house is nearly double the original square footage. In the living room sits the piano that Nordahl has kept with her since graduate school, a callback to her childhood. Having it on hand has kept her sharp; for years she played piano at Amaral’s annual holiday party.

Nordahl was in her early 30s when she started on the APP, and the other researchers on the team felt like peers; now, she says, she almost feels like their mother. Sometime in the next five years or so, a student will join the team who was born after the APP scanned its first baby.

But that long view has produced a wealth of imaging and genetic data. In 2020, for example, results from the APP and an offshoot project Nordahl launched in 2014, the Girls with Autism Imaging of Neurodevelopment (GAIN) study, appeared to overturn a long-held view that large brains in young autistic children are temporary; autistic boys with larger-than-average brains at age 3 still have this trait at age 11, Nordahl and her team found. At the time, Amaral said it was “the clearest subtype of autism” identified thus far through brain imaging. And using data from the APP and the Simons Simplex Collection, Nordahl and her colleagues identified genes  associated with that large-brain subtype. (The Simons Simplex Collection is funded by the Simons Foundation, The Transmitter’s parent organization.)

The cortex develops differently in girls with and without the condition, Nordahl’s team found in unpublished results presented at the International Society for Autism Research annual meeting in May.

Because one of Nordahl’s GAIN participants told her how hard it was to find other neurodivergent teens to socialize with, she also founded a support group called NeuroTeens, which she and her lab members run voluntarily; it has no direct relationship to the APP or research, other than that it grew out of Nordahl’s experience with those families.

Her efforts in these areas, Nordahl says, likely reflect her own school years, when she sometimes felt like an outsider. She knows she is driven to work with children whom others have struggled to connect with, or otherwise ignored. APP, GAIN and NeuroTeens, she says, are all about finding “the people whose voices are less heard.” She has succeeded at the initial task Amaral gave her as a postdoctoral fellow — the APP is scanning children who have “intellectual disability, they’re non-speaking, sometimes self-injurious. These are the kids that nobody thought could ever be scanned,” she says. “But they can.”

These projects have given Nordahl a reputation of being able to gather data where others have failed or haven’t even tried. “Christine is one of the very few people in the world who can manage to collect good data in this cohort,” says Brandon Zielinski, associate professor of pediatric neurology at the University of Florida in Gainsville and a co-investigator on the APP.

There are times, Nordahl admits, when she is helping to facilitate a NeuroTeens meeting or watching the teenagers interact in person, that she considers what data she might collect. But then she stops herself. Life isn’t just about the data. “This is not clinical,” she says. “It’s for the teens. This group is for them.”