How do you promote autonomy while supporting a healthy lifestyle in young adults with autism?

I am the parent of a 22-year-old who has recently transitioned into adult services. While I understand that she has more rights and freedoms, I’m really concerned about her ability to make healthy choices like exercising regularly. If staff don’t require her to follow her routines, she would happily sit in bed and eat donuts all day! What’s the best way for me to approach this with her new staff and leadership to make sure she doesn’t lose all the progress she has made, especially within these last several years? I’m worried about her quality of life and just want to make sure she can be healthy as we both age in this new phase of our lives.

Answered by Alex Kishbaugh, MS, BCBA and Mary Jane Weiss, PhD, BCBA-D, Melmark

supporting a healthy lifestyle in young adults with autism

Credit: Artwork by Marina Azimova, EdM, MSW, BCBA

Navigating the transition to adulthood is difficult for parents and young adults alike. It is an arduous transition, with a set of new expectations. Being a person with ASD comes with a unique set of challenges, especially in adulthood. The extent to which the individual feels ready for adulthood varies and the change brings stress. Being a parent (and now guardian) to a young adult with a disability also comes with an abundance of questions and concerns. A large part of this process will involve collaborating with your loved one’s care team to ensure a balance of respecting their rights and autonomy, while also helping them to make good choices. Indeed, within behavior analytic practice, the focus on balancing personal liberties and habilitation (skill-building) has been emphasized (Bannerman et al., 1990; Lee et al., 2018). While there is no perfect balance, the following guidelines are offered as guideposts for navigating this challenging time. They may help you tailor your efforts to your loved one’s preferences, needs, and readiness.

First, meet your loved ones where they are.

Everyone’s preferences and openness are unique and will vary across aspects of their life. For example, you may have a young adult who loves jogging or cycling, which is great! You may also have a young adult who lets you know that this isn’t their favorite thing, whether by their words or actions. Instead of being discouraged or getting into power struggles over any perceived “demand” to exercise, get curious and get creative to collaborate on the issue. Have someone who doesn’t like the treadmill much try alternatives – scootering around the premises, dancing, or even creating new movement activities are some great options! Ask the staff at their programs to try new things with them and keep you updated on how it goes. Focus on the activities they do like, and eagerly participate in, and help them build their skills and confidence by meeting them where they are. We all do better in the context of choice, assent, and willingness. Finding those preferences enables progress in these areas and ensures that goals happen in the context of full assent. Assent has been highlighted within ABA intervention contexts as an essential component of humane and effective intervention (Morris et al., 2021).

It works well to set small, achievable goals to build success and then gradually increase expectations so that the person isn’t overwhelmed or unwilling to participate. Vary their activities and get them acclimated to new fitness opportunities while respecting their boundaries and communication. In other words, respect their preferences and expand the range of things they are exposed to. Doing so might help identify new preferred activities that help not only with exercise goals, but also with building quality of life, socialization, leisure skill development, and recreation.

Second, make it a normal part of the routine.

We all thrive on routines. Thus, use this to your advantage and plan accordingly with your team to work effectively with your adult child. Staff can set certain days and expectations for activities and then continue to follow through on this. As a real-life example, every Wednesday in the Melmark Adult program, we have “YMCA Wednesdays” on our evening events calendars. Individuals who have YMCA memberships know that it is part of their routine to prepare dinner early, get their gym bags ready, and head over to the Y for some time in the pool, a fitness routine, or free play on the basketball courts. Not only do community residences do this together, but multiple residences join each other and make a night of it. Both clients and staff enjoy the camaraderie, and motivating and engaging the staff is a key part of making these activities successful. Supervisors of these programs should ensure that staff are given support and confidence, in addition to direction, to work on these goals. As with any good behavior program, modeling, professional development, and reinforcement for staff are key to success! Making these health-promoting activities part of daily routines will help your adult child to integrate these activities into daily life; routine-based activities are much more likely to endure.

Third, ensure that the experience is positive.

With the culture and social norms around “dieting” and body image, it’s important to stop and think critically about the ways that we engage our young adults on this topic. We don’t want to overly focus on their weight and imbue them with harmful cultural stereotypes around their own bodies. I’ve had clients crying in my office after their doctors have told them they’ve gained a few pounds or engaging in negative self-talk around things like eating desserts or “getting fat.” It is critical that we do not use the language of shame or guilt; although your loved one may also be diagnosed with an intellectual disability, they are very smart and may pick up on and internalize these things, if not carefully checked by caregivers. The consequences of carelessness in our words may not only result in making fitness and health experiences more aversive but can damage their self-esteem, making it harder to engage with them on healthy living topics. Instead, making healthy experiences a positive activity that is grounded in self-care will make it appealing, and will increase the likelihood of sustaining the activity.

Fourth, make it FUN.

As we’re navigating the line between previously making many choices for children and coming into the “adult territory” of partnering with them as adults, why not tip the scales in favor of fitness by making it fun? Several years ago, one of my middle-aged clients made this request: “I’d like to meet with you. I want you to take exercise out of my behavior plan.” It is important to note that exercising wasn’t part of his behavior plan, but rather an expectation of the program in which he participates; he was essentially asking me “how do I change my own behavior?” when he decided to consult his clinician rather than a program manager. We met and discussed this, and I realized that he was under the impression that “exercising” only meant “walking on the treadmill,” which he confided to me that he hated doing. We talked through other options, and it turned out we had plenty that he liked: riding a bike, walking outside, playing catch, having a dance party… you get the idea. Once I explained to him that “exercising” didn’t have to be a chore or something to engage in power struggles over, his affect and tone changed noticeably. By the end of the week, staff were telling me that he had been initiating outside afternoon walks and told them he was interested in learning how to play volleyball. We built on things he truly thrived on – social attention and one-on-one time with his favorite staff and peers, to help make these activities more enjoyable for him. Help everyone understand that every “workout” doesn’t need to be a Peloton marathon – they can move their bodies and be active and get a lot of benefits from this. And choice matters; clients can select what they find fun and fulfilling.

Closing

With the responsibility for helping a loved one be active and healthy, can come fun, creativity, and balance – if you keep an open mind as a parent to their preferences and interests. Authentic collaboration should be at the forefront of our work and will go a long way in helping us to remember that partnership is the key to successful engagement with clients. Although the change in resources and ideas that comes with the transition to adulthood can be daunting, there are also great opportunities for growth and reflection on what they truly want and need out of life. Finally, it may help to consider ways that you as a parent can also participate in these activities, so that your relationship expands, and your joint activities increase. Ask the staff members about suggestions for activities you may add to your visits; offer suggestions to your loved ones for joint activities that are more active. Keep in mind all of the aforementioned suggestions – keep it positive and fun and maximize their own agency in determining their activities. Focus on self-care and health in everyday ways, while honoring preferences and celebrating successes.

References

Bannerman, D. J., Sheldon, J. B., Sherman, J. A., & Harchik, A. E. (1990). Balancing the right to habilitation with the right to personal liberties: The rights of people with developmental disabilities to eat too many doughnuts and take a nap. Journal of Applied Behavior Analysis, 23(1), 79-89. 10.1901/jaba.1990.23-79

Lee, G., & Williams, D., Simmons, J., & Johnson-Patagoc, K. (2018). The right to effective treatment for people with developmental disabilities and severe problem behaviors. Behavior Analysis: Research and Practice, 18. https://doi.org/10.1037/bar0000133

Morris, C., Detrick, J. J., & Peterson, S. M. (2021). Participant assent in behavior analytic research: Considerations for participants with autism and developmental disabilities. Journal of Applied Behavior Analysis, 54(4), 1300-1316. https://doi.org/10.1002/jaba.859

Citation for this article:

Kishbaugh, A., & Weiss, M. J. (2024). Clinical Corner: How do you promote autonomy while supporting a healthy lifestyle in young adults with autism? Science in Autism Treatment, 21(6).

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