Psychology researchers at the University of Miami have joined an international study that tracks the development of babies and toddlers who have an aunt or uncle with autism spectrum disorder (ASD). Previous research has shown that these children are three times more likely to be diagnosed with ASD than the general population, but their development has not been widely studied.
“We’re trying to glean not just the prevalence of autism in children with aunts and uncles on the spectrum, but also how the symptoms manifest over time,” explained Michael Alessandri, a professor of clinical psychology in the Department of Psychology at the College of Arts and Sciences and one of the principal investigators at the Miami study site.
“We’re also interested in the parents’ perceptions of the whole developmental process,” added Daniel Messinger, a professor in the Department of Psychology and the other principal investigator at the Miami site. “We want to find out what it’s like for people who grew up with a brother or sister with ASD.”
The study, known as the Next Gen Sibs Project, follows young children from infancy through toddlerhood, evaluating their development at six-month intervals. The researchers use questionnaires and interviews, behavioral assessments conducted while the children participate in play activities, and cutting-edge tools that monitor visual social attention to track developmental milestones.
One of the study’s goals is to learn more about the early signs of autism in young children who have a second-degree relative on the spectrum, which could lead to earlier diagnosis and treatment for these children. Messinger previously participated in the Baby Siblings Research Consortium, a related study that tracked the development of the younger siblings of children with autism. This study identified early signs of autism that have enabled children with siblings on the spectrum to receive an earlier diagnosis and earlier access to support services.
“We’re really interested in factors that increase the likelihood of autism for little kids and in getting them the intervention they need as soon as we can,” said Messinger, who is also a professor of pediatrics.
Study participants in South Florida will be able to access support services at the Center for Autism and Related Disabilities (CARD), a state-funded resource and support center housed in the Department of Psychology.
“If there are any identified concerns, we can connect them to a CARD specialist and help them navigate those early days and years,” explained Alessandri, who serves as CARD’s executive director.
The University of Miami is among the latest universities to join the study, which spans eight research sites in the United States, Canada, and the United Kingdom. The Next Gen Sibs Project is supported by the Autism Science Foundation with additional funding provided by the Aligning Research to Impact Autism initiative and the Hilibrand Foundation.
“I think collaboration is the only way to go in autism research now,” Alessandri said. “You just simply need a lot of sites and a lot of people working together, and also a lot of people with different perspectives coming to a consensus about what the conclusions mean.”
The Next Gen Sibs Project could provide more insight into the role genetics plays in autism. The Baby Siblings Research Consortium found that the siblings of children with autism were 15 times more likely to be diagnosed with ASD than the general population, but there are still many unanswered questions about the genetic factors that influence autism risk.
“I think the answered question is we know that heritability plays a really large role, and this study exists because there’s an increased likelihood in first-degree relatives and second-degree relatives,” Messinger explained. “But of course there are still tons of questions.”
For more information on the Next Gen Sibs Project, including how you can participate, please email nextgen@miami.edu.