Neurotypical Adults and Their Autistic Sibling

How can I get my neurotypical adult sons to interact more with their profoundly autistic older brother?

I put this agonizing question out to my extensive autism community network and got very few answers other than people basically saying, “This is a huge problem for us. Let me know what you find out.” While some families seem to work things out so that the siblings get along and have visible, tangible, and supportive relationships, others, like mine, function differently. My two neurotypical sons, Max and Ben, now 26 and 32, only interact rarely with Nat, the oldest, who has profound autism—meaning, according to the NIH, he requires oversight 24/7 and has acute communication issues and sometimes explosive behavior. The main interchange between Nat and them is simply “Hey, Nat” when they first arrive.

This reality sometimes makes me sad. But lately, I wonder if maybe grieving and eventually acceptance are the way it has to be. The adult sibling may need that distance in order to heal from a very difficult childhood. Even if it was an unintended consequence, sometimes “parentification” of the typically-developing sibling still occurs. Research has found that when typically-developing siblings of disabled siblings “fulfill caregiving roles as children or adults without the necessary parental or other support, [such] parentification in childhood may result in a high level of struggle in their adult life.”

Parentification can be debilitating and we hoped to avoid this in our own neurotypical sons. We were determined that they had support to be themselves, to have their own circles, their own lives. And they do. And they are happy. Nat is happy, too, in his group home 5 miles from us—even though the only contact he has with Max and Ben is via careful, intentional planning on our part.

Like it or not, there is a reason for that. For years, Nat struggled with deep anxiety and the goal was just getting through a day without aggression or outbursts. It was all we could do to keep everyone safe and “happy enough,” as I thought of it. And so, fostering positive, friendly interaction between Nat and his two younger brothers was a distant goal that we did not know how to achieve. All we knew was that we did not ever want to force Max and Ben to play with Nat or make him an obligation to them. My husband and I would always model for them how to relate and play with Nat but we believed that they needed their own childhood, one that was not shaped around autism.

Now I wonder: Is an active sibling relationship a reasonable goal, given how challenging it still is for them to relate to Nat?

If yes, then we can start very, very slowly with small expectations. Just as when they were young, when the goal was just to get through a movie without an outburst, we can take this one step at a time, or “declare victory and then get the hell out,” as my husband always said. We can work with who all three sons are, supporting them while also showing them what to do. And feel successful with every positive change, no matter how small.

Offer Siblings Resources and Experiences

• Cheat sheet: I have been gathering lists in my head of all the things that my husband and I do for Nat on a regular basis. There are the fiduciary and administrative tasks, such as overseeing his government funding. There are also liaisoning tasks, communicating Nat’s needs and desires and activities with the group home and day program. I am going to create a little “Nat 101” booklet that lists and explains these tasks in terms of importance, frequency, and cost.
• Networks and websites for siblings: There are also resources that help siblings more generally with this kind of thing. Autism Speaks and the Sibling Support Project are good places to start.

Delegate Concrete Tasks to Siblings

• Concrete and legal tasks. Depending on the siblings’ personalities, free time, and skill set, relationships such as guardianship with the neurotypical siblings might help get the disabled brother onto their radar screen. It may be that the concrete, specific, and regularly-occurring set of responsibilities in guardianship would feel doable because of its clear boundaries. One friend of mine, Aimee from Massachusetts, suggests looking into co-guardianship of sibling(s) with the parent. Each state’s guardianship policies is different, but this article from the Center for American Progress has basic information about the types, the pros and cons, and the processes for guardianship. Aimee also found that sharing tasks with her daughter, like having her bring her disabled sister to camp for the last two summers “has made a big difference in building their adult relationship.”
• Gentle inclusion. Currently, whenever we can, we bring Nat with us to New York when we visit Max and Ben. But we don’t always do this because traveling with Nat can be a challenge: He has little patience for sitting and relaxing in restaurants; he is not one for meandering slowly through city streets and window-shopping. He accompanies us when he and we are up to it. Having Nat with us will then give Max and Ben a finite, successful experience with him without responsibility.
• Find people outside of the family. Check out Cheryl Ryan Chan’s website and concept of Circles of Support, where she teaches families how to create a support network for their adult autistic loved one. With this in mind, my husband and I have begun to rely more heavily on the group home staff for many of the “Nat tasks.” We have worked hard on creating real and positive relationships with staff in his life and this has been working out well.

Family Is Where You Find It

In the end, parents like me may have to shift their expectations of adult autistic siblings and their relationship with their autistic brother or sister. We can continue to (very gently) educate and offer experiences and responsibilities to the neurotypical siblings in caring for their autistic sibling but we must learn to accept the siblings’ degree of interest and not force anything. And we can look for others who might take on some of the responsibilities. Think of “family” in a non-traditional sense. Nat’s four group home housemates call each other “Brother.” So actually, he now has six brothers, if you think about it.