Supporting Young People on the Autism Spectrum: Setting and Pursuing Self-Determined Goals

By Beth Malow

About the Author

Dr. Beth Malow is a professor of Neurology and Pediatrics and holds the Burry Chair in Cognitive Childhood Development at Vanderbilt University Medical Center. She directs the Vanderbilt Kennedy Center’s Clinical Translational Research Core as well as the Vanderbilt Sleep Disorders Division. You can learn more about her work here.

Our hope is that this weekly blog will offer information you want to know, so if you have a question you want answered about employment for people with disabilities or other mysteries of the world of work, please email me at janet.shouse@vumc.org.

Whether it is health-related goals, like starting a diet or exercise program, or looking for a dream job, it is challenging for any of us to set goals that matter to us and to maintain the motivation to follow up.

We may have set goals in the past and had things turn out poorly, and we feel discouraged. Changing our routine, or the concern of receiving criticism from others, can add even more stress to the entire process of goal setting.  For teens and young adults on the autism spectrum, there may be even more barriers, including anxiety or worry about what might happen, not being able to imagine the good that might happen from the goal being achieved, or feeling that their goals don’t fit in with what their family or culture expects. They may have difficulty communicating their goals or understanding abstract concepts. All these factors make goal setting overwhelming!

My team has created a new Toolkit, available in both hard-copy (PDF) form and as an interactive course, that is designed for people who support autistic teens and young adults in setting and pursuing goals. The focus is on goals that are “self-determined” – in other words, goals that are important to the individuals and that they choose themselves. Through a series of steps presented visually and with concrete examples, the reader is guided through how to coach an autistic teen or young adult in brainstorming ideas for goals, asking open-ended questions to elicit responses, being non-judgmental, and helping them set specific, measurable and attainable goals.  The interactive course includes videos, flashcards, and matching exercises to make the process of goal setting and attainment interesting and fun.

The Toolkit is accessible at this link: https://bit.ly/autismgoalsetting under Setting and Pursuing Self-Determined Goals. The PDF is easily accessible. The interactive course will require you to register through the Vanderbilt Kennedy Center– it is a free and easy process.

While the Toolkit was designed to help those who support teens and young adults on the autism spectrum coach these individuals effectively, the Toolkit can also be used by the teens and young adults themselves and is applicable to individuals with a range of disabilities.

Michael McGinty, a life coach who works with young autistic adults, stated “The coaching aspect is really strong, and this will be a great tool for all families, organizations that support autistic individuals, and life coaches.”

Babs Tierno, executive director of Autism Tennessee, shared an interesting endorsement of the Toolkit.

“I feel like I could wallpaper my house in this!” she said. “It is very well done and addresses all of the common issues support persons encounter in their role.”

Support for the Toolkit was provided by the Frist Center for Autism and Innovation and the Vanderbilt Kennedy Center Treatment and Research Institute for Autism Spectrum Disorders. My work, such as this Toolkit, is also supported by an endowment from Dr. and Mrs. Michael Burry. You can watch a video about the Self-Determined Goals Toolkit with me and Professor Keivan Stassun, director of the Vanderbilt Center for Autism and Innovation, at  https://vimeo.com/443462524

We hope that you will find the Toolkit useful and meaningful in supporting individuals on the autism spectrum set their own goals that help them reach their full potential.

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I want to thank Beth for sharing information about this new Toolkit and the ways in which it might help young people on the spectrum figure out what THEY want to do and help set them on the path to success. Beth is both a friend and a colleague, and she is one of the busiest people I think I’ve ever met. She’s passionate about trying to improve the lives of autistic people in multiple areas, including in health care and across the life span. She’s also one of the most positive people I know, always looking on the bright side. Thank you, Beth, for all you do! If any of you have questions regarding this Toolkit or other issues, please email me at janet.shouse@vumc.org. Thank you for reading and may each of you stay well.