Basu’s mother recognizes this pattern. “She was never a child in my mind,” says Sharmila Basu, who acknowledges that from early on she often told her daughter “to take care of her brother in many social situations.”
The combination of extra responsibilities, daily struggles with a sibling and diminished attention from parents can lead to anger and anxiety. “These are the main issues the kids are dealing with and that we really want to look out for,” Moskowitz says. She has seen many kids who, consciously or not, don’t want to overburden their parents with their issues, so they keep their emotions tucked inside.
Claire Smith, 18, of Rockville, whose 15-year-old brother is autistic, describes it this way: “I try to make sure that they don’t have to handle me. As much as possible, I try to stay out of trouble. . . . I try to not be the one they have to worry about . . . to be responsible and patient and take stuff off their hands whenever I possibly can.”
The good moments
Duty and the burden of responsibility aside, Smith talks about some good moments with her brother. The key, she says, is being able to keep a sense of humor — to know there are times when laughter can replace anger. “A lot of it is really funny,” Claire says. “He does a lot of cute stuff.”
She recalled a recent incident in which her brother, who is also deaf, was fixated on mopping the porch. He was outside, signing to himself the instructions he had just received from his father about the chore. She chose to find his behavior funny instead of embarrassing, and to appreciate the moment. “I don’t think there are any siblings,” she says, “who can laugh at their brother having a conversation with himself and a mop.”
Beyond such little moments, researchers — and some siblings themselves — are discovering that the sibling experience can produce long-term benefits. Some studies report that people who grew up with autism in the house tend to be more empathetic. “They are often able to handle difficult situations later in life. They’ve learned how to handle embarrassing situations in public; they’ve learned how to handle negotiations better,” Macks says.
In fact, in stable families with “no demographic risk factors” such as a one-parent household or economic issues, Macks says, “by and large, having a sibling with autism is extensively viewed as a very positive experience, with limited long-term negative impact.”
Basu and Smith agree. “I feel more responsible . . . know what it’s like to take care of someone to some degree,” Smith says. “I feel I am a little more patient than some of my friends.” Adds Basu: “It helped me become more mature” more quickly.
Despite the challenges — and there are many — neither would change anything if they could. As Smith puts it: “Wishing him different is wishing him away. And I don’t want to wish him away.”
This is a point Macks wants to emphasize: “Most siblings of children with autism or any other type of disability wind up doing just fine.” He believes that there is a misconception that having an autistic sibling sentences a child to “a whole range of intense struggles throughout your life.” That is not necessarily true, he says. “The majority will handle the situation quite well.”
As we adjust to absorbing into our community all of the kids with autism and strive to support their unique educational, vocational and medical needs, I’d say let’s not forget the siblings, however well adjusted they may seem. Their needs must not be overlooked by parents, teachers, therapists, doctors and researchers.
As for myself — now the generally well-adjusted adult sibling of a 45-year-old autistic man — the challenges are evolving. I suspect they also evolve for Smith, Basu and many others.
Mishori is a family physician and faculty member in the Department of Family Medicine at Georgetown University School of Medicine.