This blog post is from Marianne Sullivan, RN, MN, Assistant Director of National Outreach and Resources on the Family Services Team at Autism Speaks. Her son Hunter, 20 years old, is diagnosed with autism.
Last year on Mother's Day, I wrote about my son Hunter's transition to independent living as a young adult with autism. Since then, as expected, there have been some ups and downs, but overall I am so pleased with this year's experience; it has given me another reason to be thankful on Mother's Day.
While Hunter has made a number of gains, we’ve also found there are challenges that will remain a focus. As most families know, a child's move toward independence is not done in a day, a month or sometimes even in a year or more. Our work and their work will continue on. Knowing this and being patient is vital. It is also helpful to stop every so often and acknowledge the successes while reassessing strategies and goals. Toward that end, it helps to have a great team involved. Hunter and I could not have done what we have without his very special team: Frank, Christian, Ben, Kim, to name a few. Their feedback and day-to-day involvement has helped immeasurably.
Hunter has told us in various ways that he wants to be understood and respected and to make his own choices, whenever possible. I am pleased to say that we have, for the most part, succeeded in this. But tasks remain. One of the biggest challenges we continue to face is his nutritional choices, which of course directly affect his health and wellness. Over the years, poor choices have contributed to poor eating habits and weight gain. (Medication, by the way, has also been a factor).
Now as a young adult, like many others his age, his independent food choices are not in line with generally accepted healthy choices. Because he earns money during the week, he of course feels he should be able to spend it as he likes--on fast foods like pizza or burgers, both of which are almost always his first choice when asked.
We have explained the importance of eating healthy in ways we think he can understand, and he understands and tries to adhere to the goal of eating healthy most of the time in order to manage his weight. His team needs to remind him and regain his commitment on a daily basis. So, while we want him to make his own decisions, we do need to set limits at times and supervise his food choices.
We are very aware of how our involvement at his age could easily pull us into a tug of war if we aren't careful. While we are pleased that he is maintaining a healthy weight, we know this will continue to be a challenge for us and for Hunter.
Another big challenge is opening up social contacts, having him develop and maintain good friendships (including a "girlfriend"). We recently ordered A Full Life with Autism, a book by Chantal Sicile-Kira and her son, Jeremy, that promises to give very practical ideas for socialization transition planning and even provides a template that we can all use to support young adults moving into fuller adulthood.
Hunter lives 4 miles from me so I can be available if needed, but so far there have not been any urgent requests from him or from his staff. I am again thankful for the team and believe that our frequent communication account for our very smooth year. Because I am not far away, Hunter and I can easily schedule our regular weekly night dinners at my place or an occasional spontaneous outing to his favorite pizzeria or to some of activity of interest.
Not only has Hunter’s independence been good for him, but it has also freed me up to start my own new social life with activities I need and enjoy in my community. This is the Mother's Day gift that truly "keeps on giving."
For families who have not used the Autism Speak Transition Tool Kit, I strongly suggest you order it from the website at: www.autismspeaks.org/family-services/tool-kits/transition-tool-kit. It will assist and guide you on all levels of caring for and supporting the independence of your child.
For those of you who didn't see last year’s article, that is referenced above, here is a reprint that may be of help in your efforts at independent living for your son or daughter: