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Adult Siblings in an Autism Family

How do I foster, not force, a bond between my sons and their autistic brother?

Key points

  • My non-autistic sons have a right to their own lives and needs, away from their autistic older brother.
  • But as my husband and I age, we will need them to help out with their autistic brother's quality of life.
Susan Senator
The Three Brothers, Ben, Max, and Nat
Source: Susan Senator

When my second child Max was born he just lit up my life. All I wanted to do was hold him and look at him. I remember when my next door neighbor reached for him and I pulled away like she was crazy and filthy. “No, I’m sorry,” I think I managed to say. I just wouldn’t let people hold him at first; he was all mine.

But those days were colored by the mounting fear I had over my firstborn Nat. He’d always been unusual in the way he played, and the way he communicated: to answer questions, he would simply repeat back what we’d said. At 2 1/4 years old it was as if he were suffering multiple anxiety attacks. He cried so often. He wouldn’t get out of the stroller to be with the other toddlers at the playground. He had trouble entering rooms full of people. I could not comfort him; he was becoming someone I didn’t recognize.

I never thought all this was a reaction to Max, the newborn sibling, even though my grandmother suggested otherwise. Nat’s steadfast eccentricity had been in him from the very beginning. Once we had a diagnosis of autism—at age three—we focused on his education and various therapies to help him learn and develop more on track.

Then there were five years of trying to be a family of four, with two very different boys looked like twins. I wanted a third child during those years but we already knew our odds for autism were very high. Still, I had a vision of what I wanted my family to be like and it was to have enough typically-developing kids to balance out the autism. I wanted Max to have a playmate. And so when Ben came along, six years after Max, I got my wish. Ben was devoted to Max, and Max was charmed by his little brother. They played together like puppies. It was a joy to watch them both, solid tall blonde Max and wiry dark Ben.

I did not know how to get Nat to join them. So many of their childhood years involved Ben and Max either ignoring or fending off Nat’s aggressive behavior. I wanted Nat to have playmates but he went to a special school and all the classmates were scattered throughout the state, and for issues around diagnosis and confidentiality, the school did not try to foster friendships outside of school hours.

I had been raised differently from Nat, Max, and Ben. In my family of origin, my older sister and I were strongly encouraged to play together—although more often than not I ended up playing what she wanted to play and rarely the other way around. As a mother, I did not want my boys forced to be friends. They each had their right to their own choices, their own path.

My husband Ned and I rarely asked Max and never asked Ben to play with Nat. Ben was eight years younger, and always unsure of Nat. As they got older, and it was clear that Nat noticed Max and felt something for him, and by the time Max was twelve we put him in charge when we couldn’t get a sitter. Max cheerfully went along with it, and I bought his calm acquiescence. I had no idea that Max harbored a lot of anxiety; I guess I saw what I wanted to see.

Other than the babysitting, Nat was a world unto himself while Max and Ben joined the world and started developing lives outside of our family. We were proud of them; they had emerged from our complicated family fairly unscathed by the turmoil.

Now they are men: 31, 29, and 23. Nat has many supports and a good group home. He will always have care 24/7, and good care at that. Max and Ben live in the New York City area and have careers and solid relationships. But they rarely ask about Nat. They have no contact with him by themselves. And when we recently told them that we’d like to set up Zoom times for them to talk to Nat on a weekly basis, they both agreed, but there was a lot of silence around the agreement.

I worried that I was asking too much of them, even though I know rationally that it’s nothing to make a two-minute Zoom call once a week. But Max and Ben seem completely quiet about their feelings for Nat. To me, it feels like they care but are not in the habit of expressing it to him. I believe they want a relationship with Nat but they do not know how. I blame myself for that because I never fostered that kind of bond with them; I did not know how to without feeling like I was suppressing Max and Ben’s natural inclinations in service of Nat. But then again, Ned and I had made the choice to give them their absolute independence, and to never feel like they were born as helpers. Disability sibling expert Don Meyer stresses this parenting approach in much of his work.

And so, beyond the weekly Zoom call, which we are still working out, I don’t know what else to do. I'm learning, from the wisdom of sibling expert Kate Strohm, who wrote Being the Other One: Growing Up With a Sister or Brother With Special Needs. Ned and I are not going to live forever. Yes, we can hire a guardian-type of friend who can check in on Nat and hang out with him, or take him to non-group home activities. But there are going to be times when Nat needs more than that. Nat came home to live with us for the entire pandemic. He’s come home twice in his adulthood because of living situations that didn’t work out. What will happen when I’m not here to take him in and regroup? How do I bring Max and Ben into my future and help them become real carers—not caregivers, but caring brothers—to Nat while living four hours away? And without the model from their childhood, how do I help them to build a genuine connection with their brother? I will be turning to sibling experts like Strohm and Meyer for guidance. And for us, like so many things during the pandemic, it is all going to start with Zoom. And love. An uninformed love, but love just the same.

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