How to Bring Adult Siblings Into an Autistic Brother's Life

As an old autism mom, not much surprises me anymore. My three boys have grown up to be good men, hardworking in their careers, dedicated to their loved ones. Yet still, when their faces popped onto the Zoom screen the other day for my oldest son’s ISP (Individual Services Plan) meeting, it was hard for me not to cry.

We had invited Max and Ben to attend this annual goal-setting meeting for Nat, their autistic older brother, and they had accepted willingly. Taken it in their stride, really. My husband Ned and I had talked with them about this meeting months ago as part of a campaign to get them prepared and familiar with aspects of Nat’s care—they will be his guardians when we no longer can be. Yet seeing them there, sharing their time and screens with Nat’s team in such an open-hearted manner, was quite moving and momentous for me.

Not that anything unusual happened. It was a typical team meeting: positive energy, warmth, insightful suggestions. The staff who work with Nat reported on his progress with various aspects of his life like carrying out tasks, learning new skills, adapting to change, and socializing, and Ned and I jumping in to compare notes on the same. Max, Ben, and Nat all sat quietly watching. I watched them, wondering what each of them was thinking. I couldn’t tell, of course, because none of them give much away; in that regard, they are just like Ned and his family—private and thoughtful.

The unusual part was their presence because it was the first time this happened. My campaign to involve them in Nat’s life is only a few years old, because before now we never asked for much of their time when it came to Nat. We never wanted their lives to be about how to accommodate their older, disabled brother. All Ned and I had asked of them was kindness and patience, and to let us do the work of taking care of Nat. But as we got older, this did not feel like enough. And when the pandemic hit, and we took Nat out of his group home to live with us, our isolation threw the whole thing in high relief. When we talked to them every week or so, they seemed so far away, in the geographical distance as well as daily life concerns, that at last I understood on a visceral level how much we had kept Nat’s needs—daily and global—separate from theirs. I resolved to change this.

Change was not so easy, however. I wanted to bring them into Nat’s adult life and future, but not from a position of demand nor as a guilt trip. I wanted simply to talk to them about what might be coming in the next three decades, and how Nat and they fit together. And so, in the late spring, a newly-vaccinated Max visited us and we rode our bikes to the community gardens near Fenway Park. There, I broke the ice with him, talking to him about how we’d like to slowly bridge the gaps and help him and Ben be more comfortable learning about Nat’s life and what their roles could be. I told Max how important it was to me that Nat be included in family gatherings, holidays, vacations—even though Nat lives in Boston and Max is in Brooklyn. “I’m sure we can do that,” said Max, as we looked through chicken-wired fences and gasped at candy-like blossoming trees and nascent vegetable seedlings. “Oh, yeah, even if we have to bring him to New York and then bring him back, yeah, that’s doable,” Max said in his straightforward, easy manner.

Still, my heart stopped for the briefest of moments as I considered this even bigger miracle: witnessing one's child being a really good man. And Ben, who is much younger than Max and Nat, was equally open-hearted and willing to start thinking about the future; he even seemed relieved to hear my broad descriptions of what could be, and what his role might be. Maybe this was easier because it seemed so distant to them, such a long way off. Maybe it helped that we had specific ideas of what we do for Nat and how they could sustain them.

The answer is still not clear. I do not know what the rules are for safely expanding the roles of the adult siblings in their autistic brother's life. And while I can see is that it is not all on me to make it happen, it is definitely on me to keep asking for real, tangible support with specific goals in mind. Keeping it specific prevents things from overwhelming them. It allows them the space to consider things a problem at a time. And it gives me a true sense of being able to lean on them when I really need to.