Creating a Sustainable Life for My Autistic Adult Son

When my autistic son Nat was little I quickly figured out that I needed not exactly a village but a stable of helpers to help raise him. Back then, as an involved young mom, most of the people I met were his teachers, aides, and later, Special Olympics coaches. Even at four years old, there were always so many adults in his world who were interested in him and eager to help that it did not take long to find helpful workers. Every now and then I would have to advertise for someone but just as frequently all I had to do was simply look around at the people in Nat's life and ask them. (This article from Exceptional Parent Magazine details my process.)

I looked for people who had a kind of ease in their manner. I would observe them with Nat when they came over for an interview. I would give them pointers on how to work with Nat, such as using repetition, and consistent and brief sentences, when instructing him in a task. I’d do a trial to see how they connected with him. I would listen from another room to everything they did with Nat. Ultimately the right person to be with Nat had to be someone who had confidence in their ability to work with him, but also the ability to watch him and learn—and quickly. They had to think on their feet when it came to engaging him. They also had to know that he was unpredictable and when to duck from his aggressions. And they had to be okay with those aggressions and unpredictability. All this, plus they had to really like this kid, to know that he just got pinchy or withdrawn at times — and not take it personally. Essentially, the people I looked for were those who were more interested in going where Nat would take them. Their agenda was Nat's agenda. These folks came to us with a genuine sense of play and delight.

As Nat moves deeper into adulthood and The Rest of His Life, I find it just as critical to find those people. But I don’t think of it as a stable of workers anymore. Now the people in his life are his age, and they know him from some part of his adult world. My job, right now, while Nat is just 31, is to identify, gather, and designate functions to the different support people who surround him. Not only because I won't always be here to facilitate things, but because he should occupy a world where others have a stake in how he does. The less I need to do, the better for him in the long run. Others will work with him to help him orchestrate his life on his own terms, according to his needs and desires. Nat should be the conductor, the maestro, to his own life, ultimately—to the degree he can be. And his orchestra is the people who are going to keep his world flowing when I am not longer able to.

Natural relationships are the key. I take a lot of my guidance about this from Cheryl Ryan Chan, who has taken the concept of circles of support—friends, family, professionals who have some function in the disabled loved one's life—to a new level with her trainings. Chan's version of Circles of Support is all about how the naturally-evolved relationship is the most powerful support behind a fulfilling autistic adult life. Circles of Support is all about identifying the values and dreams and preferences of our adult autistic loved one and then fostering organic interactions, honest relationships with others in his circles that can make his hopes and dreams happen regularly when we are no longer here. Nothing forced, but rather a door has opened for all sorts of ineractions and activities, large and small.

Here's how it would work in just one area of Nat's life: Right now we have a friend and mentor in Nat's day program case manager. Paul has worked so long with Nat as well as studied his behavior in multiple situations as to be able to have his own take on what Nat needs and wants recreationally in his life. What started out as Paul and Nat hanging out and going out for dinner every so often has become a trip to Paul's gym every Monday after the day program, to work out and build toward good rock-climbing skills. Paul came up with this; all I did was ask him if he wanted to do something regularly with Nat and then bring him back to the group home himself. So this weekly outing happens without me being a part of it. It is Paul's thing and he takes pride in how he is going to turn skinny Nat into a buff rock-climber.

Most of us cannot afford simply to hire people without considering a sustainable funding source. In Nat’s case the money comes from his leftover SSI (Supplemental Security Income, a program run by the Social Security Administration) — whatever he doesn't use for rent and food. This arrangement, this relationship between them will continue for as long as it can. The benefits are many: Paul’s work with Nat necessitates that Paul goes to Nat's group home, where Paul then must connect with staff when he drops Nat off. Then he starts to recognize people there (and they, him) and get a feel for the place. In this way, Paul becomes another layer of connection (and safety) for Nat in that he will be able to communicate with those staff people and check in with them about how Nat is doing. Just natural and casual checkpoints. And at some point, this can all happen without me behind the curtain. It’s all about tuning in to the active and positive relationships in Nat’s world and figuring out one new way to carry them over into another part of his life. Starting small and with one limited new activity together can always lead to more support. And to do it while I’m still very able to conduct—right alongside Nat—all the components and players in the symphony that is his life.