Raising a child with autism spectrum disorder (ASD) provides unique challenges that are typically addressed in early childhood. But, what happens to those with ASD as they transition to adulthood?

Assistant Clinical Professor Susan Brasher is heading a Patient-Centered Outcome Research Institute (PCORI) study that aims to form partnerships among key stakeholders such as clinicians, adults with autism, caregivers, and researchers to take on the issues related to helping those with ASD as they become adults. This includes those living with mild, medium, and severe forms of ASD.

According to the Centers for Disease Control, it is estimated one in 68 children are diagnosed with ASD. Moreover, it is estimated that 3.5 million Americans are currently living with ASD. This presents a unique problem as the bulk of current research is focused on children with ASD, leaving many care providers ill-prepared to meet the challenges that accompany caring for adults with ASD, says Brasher.

There are serious health concerns for adults with ASD that don’t come from ASD itself, but are often related to it. These medical and psychiatric comorbidities include things like seizures, anxiety, depression, sleep disorders, and gastrointestinal issues. Additionally, obsessive and compulsive behaviors in adults with ASD can cause significant challenges in everyday living.

Many times, medical providers do not address these issues collectively, which Brasher says can lessen the effectiveness of overall care. “You have to treat the whole patient,” says Brasher.

This patient-centered study is being conducted in a way that does not simply seek an answer to a question about ASD. It serves as a platform for those living with autism, their families, clinicians, caregivers and researchers to confront the issue of transitioning to adulthood with ASD. The aim is to provide meaningful outcomes that remain patient-centered.

“There are going to be a lot of different issues in transitioning to adulthood and we want to hear all the issues,” explains Brasher. “Transitioning to adulthood in ASD will be different for adults who self-identify as ‘high functioning autism’ versus those with higher severity and everywhere in between. We need to think beyond a ‘one size fits all’ approach.”

“In order to adequately address this, we need to come from all these different angles,” says Brasher.

Brasher describes this research as the most influential in shaping her career as a researcher. Because this research is so responsive to those participating in it, the current PCORI-funded project can serve as the basis for future research with perhaps more positive, patient-centered outcomes due to greater adaptability of the research itself.

“It has provided me the unique opportunity to engage with individuals with Autism Spectrum Disorder (ASD) and their families to hear about issues that truly matter most,” says Brasher. “This allows me to gain meaningful insight into these issues and to develop research responsive to their needs.”