UI researchers use BabySteps smartphone app to assess children with autism, developmental delays in home setting
When Ashley Westphal was told that her three-year-old daughter, Rogue Westphal, had sensory processing difficulties—which are common among children with autism—she didn’t understand what the diagnosis would mean for her family.
The Westphal’s local doctor referred them to the University of Iowa Stead Family Children’s Hospital’s Center for Disabilities and Development (CDD) for further consultation. Prior to Rogue’s appointment, Westphal received a call from CDD asking if she would be interested in downloading a smartphone application called BabySteps.
“The reason I did it is because I wanted to learn more about autism,” Westphal says.
The BabySteps app is a tool that allows families to upload videos and pictures of their child within their home, so researchers and physicians can get a sense of the child’s social experience and development outside of a clinical setting. It gives families the ability to record ecological momentary assessments, developmental milestone screenings, videotaped social behavior, virtual baby book photos and videos, and earn “BabyBucks” with each completed research questionnaire.
The data gathered is then used to support research at the UI’s new Hawkeye Intellectual and Developmental Disabilities Research Center, or Hawk-IDDRC. Hawk-IDDRC works to translate research findings into real-world clinical care to help families like the Westphals.
The BabySteps app is supporting Hawk-IDDRC research on genetic/polygenic and epigenetic risk markers in autism and developmental delay. Most genetic differences are stable across time—meaning they don’t change—but epigenetic risk markers are linked to the function of different genes that may change over time, says Lane Strathearn, MD, PhD, co-director of Hawk-IDDRC, physician director of CDD, and professor of pediatrics—developmental and behavioral pediatrics in the UI Carver College of Medicine.
“What we’ve found over many years is that there are genetic differences, but the surprising thing is that each genetic difference only explains a very small piece of the puzzle,” Strathearn says. “So, there may be dozens of genetic factors, each of which only explains a small proportion of all of the children with autism.”
The BabySteps research looks specifically at factors related to the onset of autism, Strathearn says. Families will be evaluated at the CDD and provide information on their child’s day-to-day life on the app, and researchers will also study blood samples of children with autism for genetic markers.
Data from the study will be analyzed for genetic markers that may be affected over time and any changes in gene expression or function that may be relevant for autism.
Researchers already know there are multiple genetic factors—not just a single gene—that may increase risk in autism, Strathearn says.
“So, the question that we’re particularly interested in now is what else may be contributing to risk—are there factors that we can actually identify early to help prevent some of these developmental disabilities?” Strathearn says. “That’s really our most important goal right now.”
In a coming study at Hawk-IDDRC, pregnant mothers will start charting their child’s development on the app as early as their prenatal ultrasound. Because autism and some other developmental disorders cannot always be diagnosed until kids are older—with more motor, language, and communication skills—videos and photos of the kids on the app will help researchers to identify and study them sooner.
“We can learn a lot, particularly if we can see videos of kids in their family setting,” says Ted Abel, PhD, co-director of Hawk-IDDRC and professor and DEO of neuroscience and pharmacology in the UI Carver College of Medicine. “You bring a child to an unfamiliar clinic, a setting they’ve never been in before—they don’t know anybody there—and it’s sometimes hard to obtain a clear picture of what’s going on.”
BabySteps aims to improve recruitment and retention rates for this type of research in a primarily rural state, providing a foundation for additional research that begins from pregnancy, specifically for rural populations.
Westphal, whose family lives in Evansdale, Iowa—about an hour-and-a-half away—says the app prepared her for Rogue’s first appointment at the CDD. Westphal says she would not have been informed enough or ready to answer the physician’s questions about Rogue and move forward with her treatment without the tracking features of the app and a corresponding survey provided by researchers. But she was also inspired to participate in BabySteps research to help other families.
“Ultimate I hope the BabySteps app and the Hawk-IDDRC research will help other parents by providing them with better resources for their children,” says Westphal. “I want to help other people who don’t have that knowledge—like I didn’t. I want other people to be able to relate to it and to know there’s other people out there who are in the same situation.”