Adults on the autism spectrum are often overlooked in research studies, and there are few proven interventions designed to improve the quality of life of this population. The majority of autism's costs in the U.S. are for adult services at an estimated $175 to $196 billion each year, according to Autism Speaks. Costs to care for adults with ASD are more than double their general population counterparts, and there are growing concerns related to the health and well-being of this rapidly growing population as they age.

FPG's Step It Up research program is an innovative study for adults on the autism spectrum that is focused on taking some initial steps toward addressing these growing concerns in the field.

Step It Up uses a 12-week, self-managed exercise program to assist adults with autism spectrum disorder and accompanying intellectual disabilities with increasing their healthy exercise habits. Step It Up, funded by the Organization for Autism Research, is a randomized controlled trial that is studying the impact of the use of a Fitbit for fitness tracking, combined with coaching from a family member or friend. The goals are to coach participants into increasing their steps, and ultimately help them manage and monitor their own physical exercise.

Kara Hume, PhD, advanced research scientist at FPG, Melissa Savage, PhD, assistant professor at the University of North Texas and former postdoctoral fellow at FPG, and Brianne Tomaszewski, a current FPG postdoctoral research associate, lead the work. The project is based on Savage's line of research exploring the impact of varied forms of prompting on enhancing exercise for people with ASD.

"In my early work I found that prompting was effective in increasing steps and improving health outcomes for our participants, but I wanted to develop strategies that would also promote independence and enhance quality of life," Savage explained.

This led to the addition of the Fitbit to provide prompting, feedback, and to help individuals with autism learn to track if they are meeting their step/health related goals. The shift in prompting methods is paying off.

"I was really surprised that my athlete was able to do things independently. I thought he would require more support but after a couple weeks he was setting his own alarms to do his exercises and independently going out and completing his steps. Regardless of the weather or anything else going on he was really motivated to reach his goal." - Step It Up Coach

After establishing an initial step count, the participants (or athletes as they are referred to in this project) generate a step goal and with the support of their coach track their steps across the week. An online training and tracking system helps coaches and athletes watch their progress over time. Early findings indicate that the Step It Up intervention is helping athletes with autism increase their steps. Though the program is still in its early stages, the Step It Up team is anticipating that there will be health related benefits, as well as broad improvements in independence, mental health, and quality of life.

There are additional benefits for the coaches and athletes, including learning how to use a Fitbit and embedding exercise in daily routines; mastering a self-monitoring and self-management routine through tracking fitness progress, setting goals and making decisions about when and how to meet those goals; and the special relationship that forms between each coach and athlete.

"The coaches that I've worked with said that they were motivated by the athlete, and this led to excitement around scheduling days to exercise and excitement around everyone meeting their fitness goals," Tomaszewski described.

Though the needs of adults with ASD are vast and diverse, improving physical health and enhancing a sense of autonomy are outcomes that could benefit anyone. And perhaps most importantly, the intervention methods used in Step It Up are affordable, accessible, can be implemented easily, and can be used with individuals with varied skill levels.

"This is a small study, but we hope to have big impacts on the lives of adults with ASD and their communities," says Hume.

To learn more and/or potentially participate in the Step It Up study, visit https://stepitup.fpg.unc.edu/.

This study is funded by an applied research grant from the Organization for Autism Research awarded to Kara Hume and Melissa Savage.