Darlene Borré, a West Hartford resident and autism advocate, is once again helping UConn students ‘engineer a better life’ for people with severe autism.
This fall, the freshmen engineering students at the University of Connecticut started their first day of college with a semester challenge: Learn about autism and create a design that will give someone a better life.
Associate Dean Daniel Burkey, Ph.D, has been looking into possible projects for his students that would help connect them to their community here in Connecticut. He wanted to show them the impact of design on real people.
Julia Yakovich of UConn’s Service Learning Department directed him to West Hartford autism advocate Darlene Borré. When he learned about the day-to-day issues faced by families coping with severe autism, he knew his students could make a difference.
Nearly half of people with autism also have an intellectual disability and approximately one-third of people with autism remain nonverbal their whole lives. People with severe autism require constant care and although you might often hear about autism, you rarely hear about this type of autism.
Children and adults with severe/nonverbal autism are often overlooked as the “neglected end of the spectrum.” According to reports in the “Journal of Autism and Developmental Disorders” and “Autism Research: Official Journal of the International Society for Autism Research,” of the research dollars invested in autism research, significantly less is dedicated to severe autism.
Borré shared her experiences about her son, Ben, who is a nonverbal teenager with autism. The students heard about the daily struggles that families face and their collective fear for the future. They learned about how little control and choice a person with severe autism has over their own life. They learned about the challenges faced by people with severe autism relating to impulse control and safety issues.
Students will be choosing from a list of challenges that Borré compiled after talking with other families.
“There was a discussion with the families about whether to disclose our most private and vulnerable struggles but, in the end, we all decided to just put it out there because if there is a chance lives can be improved, we need to take that chance,” Borré said.
The students will have spent a full semester working on ideas to make life easier and better, and will be presenting their designs on Friday, Dec. 6, at 11 a.m. at the Werth Tower Idea Lab on the UConn Storrs campus. Those wishing to attend should RSVP via QR symbol below.