Parent attitudes on genetic testing for children with autism spectrum disorder

Around one percent of the world’s population has been diagnosed with autism spectrum disorder. Dr. Lei-Shih (Lace) Chen, associate professor in the Department of Health and Kinesiology, conducted research focused on parent perception, knowledge and experience with autism genetic testing.

“The idea is we want to know why. Why do kids have autism? Is that genetics? Is that inherited from one of the parents or both parents? Not every kid will be able to diagnose with an autism gene but as this is the starting point, we want to know why,” Chen said.

The study conducted by Chen and her colleagues serves as an initial window to understand parental intention to pursue genetic testing for their child with autism spectrum disorder.

Chen uses “international comparison research to understand what parents of children with ASD think about genetic testing.”

Chen said through genetically testing a child with ASD, doctors will be able to create a better healthcare management plan that is tailored specifically to the child. Additionally, the genetic tests provide parents with valuable information.

ASD has a family history component, so if parents have a child with ASD, there is a high likelihood for them to have another child with ASD.

“The benefit of genetically testing children with autism is what we are able to see from the tests,” Chen said.

The findings from the genetic testing of children with ASD can provide more information on the topic which is beneficial for both parents of children with autism and medical researchers and doctors.

“I did quantitative interviews with 42 U.S. parents of children with autism and 39 Taiwanese parents of children with autism, and then I did a survey for both populations,” Chen said. “I had about 500 participants fill out my US survey and about 400 participants fill out my survey in Taiwan.”

Chen has finished data collection to find the general attitudes of the parents and is now conducting intervention. Based on her baseline data, parents of children with ASD were interested in receiving more information about genetic testing.

“We always ask the parents if they are interested in receiving any education about autism,” Chen said. “If most people say that they aren’t interested, then there’s no need to create an intervention, but thankfully that isn’t the case here.”

The research conducted by Chen helps to educate parents on the benefits and information that can come from genetic testing.

“Most parents with actual research, regardless of Taiwanese parents or U.S. parents, have very positive attitudes about offset genetic testing because they want to find out, ‘what’s happened to my child?’ and contribute to research,” Chen said.

Chen said this research gives her an inside look into what parents of children with ASD think, their knowledge, experience and attitude about autism genetic testing. She said the research is never finished since there are still many things that could be done.

Learn more about Dr. Chen, her lab and her research focus areas.