I know that people are warmed by stories of siblings who selflessly shower the disabled child with love, attention and support. I think that’s great, too. And it’s for real for some siblings. But for many of us, relating to a sibling who is on the autism spectrum can be complicated. The challenges to a warm, close relationship are many. Normal sibling rivalry doesn’t work, because it can never be a fair fight.
Here’s what siblings often are up against, particularly when a brother or sister has more severe autism:
●missing out on typical family outings, such as movies, restaurants and vacations;
●being embarrassed to bring friends home;
●unpredictable and sometimes violent tantrums and outbursts aimed at you;
●being expected to grow up faster than you may want to, because you need to be the “responsible one”;
●the sense that you come second to your parents, because so much of their time and energy is focused on the one with autism.
These are all fertile ground for building resentment. And then feeling guilty about feeling resentment. Because, after all, even as youngsters, we do understand that our disabled sibling cannot help being disabled.
A dearth of research
The feeling that our needs come second is echoed in the small volume of research on how autism affects siblings. Understandably, most of the scientific focus goes to the child who has the condition. (One in 88 children in the United States has some form of autism, according to the Centers for Disease Control and Prevention.)
At the same time, it should be remembered that at least twice as many children confront the problems of having a brother or sister on the spectrum, says Ryan Macks, a child psychologist at Cincinnati’s Children’s Hospital and one of the few researchers on sibling impact.
A fair amount of research has been done on how autism impacts the family. Most of it, however, has focused on how parents are affected.
What intrigued me — both as an autism sibling and as a family physician whose patients include autism siblings — was the dearth of studies looking specifically at the sibling relationship.
Moreover, the small amount of research tends to center on issues of academic performance, mood disorders and social performance, and is far from conclusive.
A 2006 review of the research in the Journal of Intellectual and Developmental Disability found that while some researchers were uncovering “deleterious outcomes,” others were finding siblings who were well adjusted or whose challenges were of “low magnitude and non-significant.”
A 2007 Harvard Review of Psychiatry article echoes this, mentioning studies that document “distressing emotional reactions such as feelings of anxiety, guilt and anger” and “more adjustment problems” as well as research noting that “some siblings benefit from their experience, others seem not to be affected.”