By Michelle Landrum, research and outreach coordinator for the Early Autism Risk Longitudinal Investigation (EARLI), at the Johns Hopkins Bloomberg School of Public Health. Thanks to the passion and generosity of its donors and volunteers, Autism Speaks helps support the EARLI study and its collaborations with related research projects through several research grants.
When Rob and Holly Waldman’s son John was diagnosed with autism in 2009, they felt uncertain of the path ahead. But they were determined to do their best for both John and the baby Holly was carrying. This Maryland couple volunteered for the Early Autism Risk Longitudinal Investigation (EARLI Study) the same day they learned of John’s diagnosis.
EARLI is examining environmental and genetic risk factors for autism – and their interplay – starting during pregnancy. It’s funded through a major grant from the National Institutes for Health, with additional funding from Autism Speaks.
“It made a lot of sense,” Rob recalls. He and Holly wanted to help advance understanding of autism’s causes and, at the same time, have researchers closely monitor the development of their next child. “I felt better that we were doing everything we could,” Rob says.
Today, the Waldmans are among 233 families taking part in EARLI through one of four locations:
- Drexel University and the Children’s Hospital of Philadelphia*
- Johns Hopkins University and Kennedy Krieger Institute* in Maryland
- Kaiser Permanente’s Division of Research in Northern California
- University of California, Davis and its associated MIND Institute.
* a member of the Autism Speaks Autism Treatment Network
EARLI has a very specific study population: All enrolling families have a child on the autism spectrum with another on the way. Our researchers will continue to follow the enrolled families through early 2016. (Enrollment is currently closed.)
“The EARLI Study allows us to collect rich array of data on wide range of possible autism risk factors during the time we think these risk factors are operating – the prenatal time period,” says principal investigator Craig Newschaffer, of the AJ Drexel Autism Institute. “We suspect that there are a number of as-yet-unknown factors that work along with genetic susceptibility to cause autism,” Dr. Newschaffer says. “EARLI’s data collection approach will give us a chance to develop strong leads about these.”
After enrolling, Holly provided researchers with highly detailed information about the progress of her pregnancy. She answered questions about her health, habits, diet and stress, as well as the personal-care, household and work products she uses.
Like all EARLI families, the Waldmans also provided home dust samples for chemical analysis. They provided blood samples. And when Gavin was born, the EARLI researchers received his placenta.
The family continued to answer detailed questions about Gavin’s health, diet and development. Importantly, they also brought Gavin in for regular developmental monitoring by the EARLI team. This continued until Gavin was 3 years old.
“We felt we were getting something in return,” Rob says of the expert developmental assessments Gavin received.
The Waldmans were among the first families to graduate from EARLI. Today, Gavin is almost 4, with no signs of autism, Rob says. However, the EARLI clinicians noticed early that Gavin was slightly delayed in communication, Rob recalls. Holly and Rob raised the issue with Gavin’s preschool teacher.
Older brother John, now 6, is making progress with behavioral therapy but remains nonverbal.
Although the Waldmans’ role with EARLI is done, our study has much more work ahead. Our researchers continue to collect and analyze information.
The Waldmans say they’re eager to see the results. “When we were doing this, we felt we were helping, whether for others or for our sons,” Rob says.
Although it’s been more than sixty years since scientists first identified and described autism, its causes largely remain a mystery. Through our EARLI study, we hope to change that.
On behalf of the entire EARLI team, I’d like to thank Autism Speaks and its community of families, donors and volunteers for their support.
Editor’s note: The EARLI study and its researchers are part of Autism Speaks Baby Siblings Research Consortium. The consortium brings together research groups from around the world with the mission of discovering the earliest predictors of autism. This work both advances understanding of how autism develops and promises to open the door to earlier diagnosis and treatment. Read more about this important research and its findings here.