What Does Independence Look Like for My Adult Autistic Son?
Emotional independence may be more important for him than living away from home.
Posted October 9, 2019 | Reviewed by Matt Huston
Many parents in the autism community live in an unsettled, anxious state because they have an adult child who is still at home, or very dependent on them, and they can't quite imagine how it will all end—who will take their place as caregiver, and how they will find the necessary supports for their family member.
A 2010 paper by Karola Dillenburger and Lynn McKerr of Queens University in Belfast, titled ‘How long are we able to go on?’ Issues faced by older family caregivers of adults with disabilities," captured this reality. Yet the same study made another important point: These parents reported that "They loved their sons and daughters very much and had much fun living together." How often do we hear that? Yet how true it is.
My own autistic son, Nat, 30, has not been living at home with us for a very long time, but he has chosen to spend every weekend with us for the last 13 years, and we've wanted this, too, because we've fervently believed that no one can love him or take care of him the way we can. Through the good and bad times, Nat's presence during our weekends has shaped our lives and given warmth and comforting structure to our days.
On a recent Saturday, however, I felt something was off. I pulled into the driveway around 4 p.m. as the sunlight was starting to wane. Suddenly I felt tired, old. Like a big, stale sigh. I knew it had something to do with Nat, and before the something formed into words, I could see what it was. Here it was, a Saturday afternoon, and Nat was not here.
We had just dropped him back at his group home. Saying goodbye to him is always hard because I'd have the vague, smudgy-gray feeling that I was doing the wrong thing sending him to live away from me, and that he was supposed to live with me, where he was deeply loved and appreciated and safe. I certainly had reason for malaise about Nat going back: He has limited verbal ability and has a hard time telling us what he's feeling, either physically or mentally. So for 13 years, I think I've feared the worst: that he was unhappy living away from home, or if not unhappy, then resigned or numb.
Even though Nat has had decent group homes over the years, my guilt about what it might be like there for Nat has never really dissipated. This feeling is aside from the well-grounded fears of group home abuse. Far more frequently, the feeling I struggle with is that I am living two lives—one for me and one for Nat.
I have at times felt that I need to get inside his head, figure out what his experience of any given event is, or whether he's feeling sick or hurt. I don't always do this, of course, but on some level, he is always in the back of my mind, as a sigh or a wish. Not a wish that he be any different, but a wish that I could do more for him somehow.
I have to have my radar on for anything bad or sad clouding Nat's sun. Any piece of evidence, I'd pounce on it and worry about it.
When a room opened up in a nearby group home, we checked it out, and almost immediately, I felt different from how I'd felt about any other placement. The house was in a beautiful neighborhood, with sidewalks for long walks and a park nearby. The staff were enthusiastic, smiling, interested in us and in Nat, talkative, and seemed like fun. The house smelled deeply of complicated cooking. The other housemates were around Nat's age, and it felt so good to see those guys loping around the rooms the way Nat does.
This group home was all men. Autistic in their own ways and interesting and active. I loved the obvious personalities of the guys: one was very cool-acting; one was very quiet and fascinated with schedules; one was a sports fanatic.
As we were leaving, another of the residents came running out of the house, screaming to get us to wait. He came up to Nat, jumping up and down, biting his finger to keep from screaming in his excitement, and my heart just turned over. This guy. This guy was just like Nat. And he could talk. This guy sealed the deal.
Over the last few months, we began to notice that when we told Nat he had to go to the group home on Fridays, and not here—it was just getting too hard for me to pick him up at 3 p.m. at his day program every single Friday—Nat would simply say, "OK." He was still eager to come home the next day, but something was different. One weekend after being with us, I saw him grinning broadly when we dropped him off. And then came the last two times, when, as we made his monthly schedule with him, he chose his group home over being with us.
I was actually giddy when he did this; it was so unusual. So wonderful. We dropped him off, and I felt happy for him, no sadness at all. But the glow faded as we pulled into the driveway. And it came to me, in a rush of hot shame, that I was sad because he was happy there. I could not believe my own selfishness. Nor could I believe what was in front of me: that he didn't need to live with me anymore. He didn't even want to. He was really, truly gone.
I realized something else, too: If Nat is happy, then I can exist on my own. I can be somewhere over here, in my own world, house, community, while he can exist somewhere over there, with his own life, intact and interesting to him. It may not be forever, but for now, it is real, and it is his.
So I guess it's time for me to take a deep breath and dissolve that lump in my throat. Time for me to look around at my life. Time for me to see, like Nat does, what it's like to live it untethered, purposeful, and yes, bravely.
It's time—for me.