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IOWA CITY — The third daughter of four — with two older sisters in their teens and one who’s two years younger — Rogue Westphal is approaching age 3 and charting a different developmental course from her siblings.
While she’s very smart — counting to 20, reciting her ABCs, identifying colors, putting together puzzles and learning some Spanish in addition to her ever-widening English vocabulary — Rogue has a hard time communicating and connecting with other people.
She says mom and dad — but not to her mom and dad. When she wants something, she taps her parents and leads them, instead of using words.
Even as a baby, Rogue liked to keep her distance. When people would laugh, she’d cry. When her younger sister was born, Rogue’s behavior worsened. When she’d get upset, she’d hurt herself.
“She would just start running herself into walls or into the washer and dryer, bang her head up against a chair — like a metal chair — on purpose, and so she’d leave marks on herself,” said her mom, Ashley Westphal, 35, of Evansdale. “We didn't want to get in trouble for that.”
So the family in October 2020 took their 2-year-old to their physician, and as Westphal was trying to explain her daughter’s sensory sensitivity and tantrums, Rogue threw one. “We were there for like an hour and a half trying to calm her down,” Westphal said. “She was running into the beds and everything there, the walls … And they started asking all these questions about things that made her do that.”
The clinicians suggested Rogue had “sensory processing disorder.”
“And the doctor made a comment saying, ‘Oh, you know, most kids who have autism end up having sensory processing disorder,” Westphal said. “And I was like, ‘what?’”
After a referral to see Dr. Lane Strathearn at the University of Iowa Hospitals and Clinics — where he directs the Division of Developmental and Behavioral Pediatrics — Rogue was diagnosed with “autism level 2,” plus a “receptive, expressive language disorder.”
To Westphal, the news felt isolating.
“I only knew one person whose kid had autism,” she said. “And so in my mind I was like, man, I don’t know anything. I don’t know anybody.”
A new Hawk center
But Westphal is not alone.
Autism diagnoses have exploded in the past two decades. The U.S. Centers for Disease Control and Prevention in 2000 reported 1 in 150 American children had an autism spectrum disorder diagnosis. The prevalence increased to 1 in 54 in 2016, the most recent CDC data show.
Additionally, during a study period from 2009 to 2017, 1 in 6 children ages 3-17 were diagnosed with a development disability — including autism, attention-deficit disorder, hyperactivity disorder, blindness, cerebral palsy and others.
That, Strathearn said, amounts to more than 1.5 percent of the population diagnosed across their life span.
“I think it's particularly relevant in rural populations, such as Iowa, because of the difficulty communicating and having access to information and services to our rural state,” Strathearn recently told the Iowa Board of Regents — explaining UIHC’s response to the growing concerns. “So that's one of our particular goals and focuses — to expand information and technology and services to children throughout Iowa.”
In collaboration with neuroscience researchers in the Carver College of Medicine and its Iowa Neuroscience Institute, a team of clinicians, researchers and professors — including from the UI Center for Excellence in Developmental Disabilities — are launching a new UI Hawkeye Intellectual and Developmental Disabilities Research Center, or Hawk-IDDRC.
The UI center expands an existing network of 13 Intellectual & Development Disabilities Research Centers — located from coast to coast and funded by the National Institutes of Health — aimed at supporting science and inquiry while pushing clinical applications for families and kids.
“Sometimes there’s a disconnect where they may be following a research path that’s not really well-matched with the actual condition and problems that those families face,” Strathearn said. “And vice versa as well. The clinicians sometimes just aren't really well-versed in what some of these basic research questions are and how they could benefit their own patients.”
The new Hawk-IDDRC aims to “bridge this gap between clinical research and clinical work in the area of intellectual and developmental disability.”
“Because sometimes those two groups speak different languages,” Strathearn said.
The UI is awaiting final word from the NIH’s National Institute for Child Health and Human Development on a $6 million grant to officially launch the center intended to support a spate of cross-campus studies. One autism-specific endeavor the grant will fund aims to increase early diagnosis, accelerate and target intervention and amass data that could reveal causes and potential prevention methods.
“Our goal is to better understand some of the key factors that predict the onset of autism,” Strathearn said. “We know that the earlier you are able to identify children with autism and provide interventions, the better off those kids are in the long run.”
The UI autism research uses a BabySteps smartphone app that Strathearn developed to give parents an in-home tool to help researchers answer broad and big-picture questions while also helping physicians better care for children.
“They videotape their child, and interacting with their child, so we get a sense of behavior in a home setting,” he said, reporting his team recently received approval from the Iowa Department of Health to access newborn blood samples — supplementing that at-home data.
The goal is to compare infant blood samples with new blood samples collected when a child is diagnosed with autism, Strathearn said. Researchers specifically want to study epigenetic markers in the blood, which can change over time and affect how genes function, to determine if children with autism experienced epigenetic evolution.
The study aims to cross-reference the children’s social experiences and environments with the blood work to determine potential causation and association.
“We know that our social experience contributes to development in different ways,” he said. “It may be that there's an interaction between genetic risk and social experience over time.”
Researchers also want to track genetic markers that don’t change to see whether certain ones contribute to the risk.
“We're hoping that we can identify early markers,” Strathearn said. “And then we can provide some interventions even earlier than we're doing now.”
On average, he said, children aren’t diagnosed as being on the spectrum until 4 or 5 years old — often after they’ve encountered the school system in some form.
“We want to say, ‘OK, how can we identify these kids at a year of age, perhaps?’” Strathearn said. “That intervention early to promote social development in these kids … we're hoping that this may be a means of preventing some of these developmental consequences.”
Recruiting and intervention
Families are recruited to participate in the BabySteps research when they make appointments at the UI Center for Disabilities and Development for suspected autism. Because wait times between scheduling and being seen can span three to four months, Strathearn asks participants to use the app over that time to gather in-home evidence and snapshots of their child’s behavior.
The Westphals were among the families agreeing to record their child using the app and send the videos to her care team. Westphal captured examples of Rogue’s intelligence — counting the numbers on an analog clock. She recorded her daughter tapping her — instead of using words — to ask for something. She shared an example of a specific TV show setting off Rogue.
“I don’t understand,” Westphal said in the video clip she sent to the university.
After her follow-up interview, Westphal has gotten a social worker and referrals for speech and occupational therapy — and she’s working on accessing behavioral therapy.
And that early intervention, in part, is the point, according to Hawk-IDDRC Co-Director Ted Abel, who directs the Iowa Neuroscience Institute and is department executive officer of Neuroscience and Pharmacology.
“The overarching thing is to build the research environment at the University of Iowa in developmental disabilities, but also to connect that to the clinic and then to connect it to the community,” Abel said. “One of the things that we're seeking to do is to really incorporate the community and help them as they learn to navigate this process.”
Abel said this area of study hits particularly close for him as the parent of a 21-year-old on the autism spectrum.
“He just finished his first year at the University of Iowa and he's doing terrifically well,” Abel said of his son, noting interventions have helped him navigate social settings he finds difficult, like going to the movies.
By identifying new tools and making new connections, the university aims to disseminate those types of supports and resources across the state — while also laying the groundwork for more expansive research into potential autism causes. A larger UI study aims to enlist pregnant mothers during their third trimester to track — using their phone — data and experiences over a longer period of time.
“Things often start off well and then you realize, well maybe they should be walking or they should have more words than this and things are a little slow,” Abel said.
“They don't really get diagnosed until they're 2 or 3 or even sometimes older,” he said. “And what we're trying to do is develop ways to have information about individuals from before they're diagnosed.”
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