Families with autistic children who participated in a 1980s U. Utah study have allowed researchers to focus on adults with autism through the Autism Speaks grant.
The $450,000 grant will permit researchers to follow up with 241 autistic adults who were studied 25 years ago as children by Utah and UCLA researchers. Their goal is to catch a glimpse of the individuals over time to better understand autism in adulthood.
Not much is known about the effects of autism in adulthood, including necessary support services, as well as struggles with employment and social interaction.
“What’s needed is a large, population-based sample to better understand the issue,” said William McMahon, professor and chairman of the U School of Medicine’s department of psychiatry. “With the Autism Speaks grant, we can start to provide more information for this area of need.”
Autism is a major public health concern. Not only is it lifelong, but its prevalence is increasing, McMahon said. In 1980, autism was found in four of every 10,000 children. Today it is found in one out of every 100 children, he said.
To kick off the start of the new project, a meeting was held Friday at the Carmen B. Pingree Center for Children with Autism, to discuss the new study and give an update about autism research. Carmen Pingree discussed her experiences she has had with taking care of her autistic child, who is now 35.
“People have no idea how many barriers there are to just show up to an event,” Pingree said. “It’s a difficult thing.”
Pingree told how her son has experienced many health concerns, included seizures and vision problems.
Many parents attended the meeting to hear the updates on autism research.
Intellectual disabilities co-occur in only 25 percent of individuals with autism, and parents who have one child with autism have a 15 percent increased risk of seeing it within their later offspring, McMahon said.
“It is my hope that we can look back once in a while and see how far we’ve come,” Pingree said. “We look for a brighter future where more is known about autism.”
Researchers hope for participation from family members in order to progress their research.