When Lisa Latten’s son, Ian, was diagnosed with autism at age two and a half in 2007, what she remembers was her fear. “I thought, ‘What am I going to do?’ I had this overwhelming need to close ranks—to protect my child, to protect myself,” she recalls. “As a parent, you recognize that the world is not set up to support our kids, accept our kids, and love our kids.”
In the intervening years, she has found caring doctors and dentists at the University of Rochester Medical Center who are skilled at working with Ian and other children who have intellectual and developmental disabilities (IDD). She’s witnessed a significant jump in awareness, as the number of children diagnosed with autism spectrum disorder quadrupled between 2000 and 2020. And she and her son have benefited from research and new approaches to care, including many pioneered and honed at Rochester.
Latten herself has helped propel this change: today, as a clinical administrator in the Medical Center’s Division of Developmental and Behavioral Pediatrics, she helps families who have concerns about their child’s development connect with the resources they need. In addition, she often informally provides emotional support to parents who find themselves in the spot she was in 17 years ago. “Sometimes, families just want someone to say, ‘I’ve been that parent, I really do know how you feel,’ ” she says.
The University of Rochester has long been known as a leader in the field of IDD. It is one of just eight institutions nationwide with three major federally funded programs that support IDD-linked training, research, and advocacy. Over the past decade, the University has invested more than $80 million in IDD research and care, opening new facilities and expanding research programs. Its pediatric clinicians work with more than 15,000 IDD patients annually, and the school’s dentistry program cares for more than 2,000 patients.
And thanks to a recent $50 million gift from businessman and philanthropist Tom Golisano, these efforts will accelerate even further. Future plans include a new facility, the Golisano Intellectual and Developmental Disabilities Institute, that will bring together more specialists and researchers to help individuals with IDD and their families thrive. They also include increased funding and collaboration for research, training, care, and advocacy.
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This story appears in the fall 2024 issue of Rochester Review, the magazine of the University of Rochester.
Photo Caption: FRONTIERS IN RESEARCH: A Mobile Brain/Body Imaging or MoBI facility at the Del Monte Institute for Neuroscience enables study participants to carry out a variety of tasks requiring sensory integration, motor planning, and sequenced execution of movements as brain activity and fine motor data are collected simultaneously. It is one of the research tools to be consolidated under the umbrella of the Golisano IDD Institute. (University of Rochester photo / John Schlia)
