It is a virtual epidemic. One in 88 American children is diagnosed with autism-spectrum disorder, according to the Centers for Disease Control and Prevention. Earlier this week, Representative Darrell Issa, chairman of the Committee on Oversight and Government Reform, held a hearing on how the federal government can better respond to the dramatic rise in autism rates. Yet for all this concern, one large affected group is being routinely overlooked: the siblings. Of the 839 studies reported within the past four years in the Journal of Autism and Developmental Disorders, only four were devoted to siblings, and their primary focus was on genetic risk rather than life experience.
Over the past five years, I conducted in-depth interviews with a nonclinical population of 35 siblings of children with autism, and their pain, grit and silent endurance was akin to children who grow up with a parent or sibling with a chronic, debilitating disease. As they told their stories, often for the first time, they spoke of brothers who lurch from a gentle touch, stare fixedly at a moving fan and avert their gaze from a smiling face. They described sisters who scream when a chair is moved an inch out of place or repeatedly recite the names of flowers that begin with p.
Perhaps the most striking motif across interviews was the fierce devotion they showed to their affected brother or sister. One youngster relived a catastrophic event when her brother quietly drifted away while in her charge. The image of his wandering the streets, unable to speak his name, was forever etched in her mind, her carefree lollipop days forever gone. Gripped by the specter of losing him again, she became as vigilant as a tiger mom and created an invisible tether connecting each to the other. In another family, Marion, the older sister of a spectrum child, applied to Harvard and was promptly accepted. But she seriously considered refusing the offer because “I couldn’t abandon Elena when I was literally my sister’s keeper.”
Despite their devotion, most siblings also resented the affected child. Though they fully appreciated the burdens their parents shouldered, they lamented a family that totally revolved around one child. Major school events were often attended by only one parent, the other staying at home with their spectrum child. “Hey, what about me? I have special needs too,” one remembered protesting. Not surprisingly, many envied their friends’ “normal” sibling relationships. They longed for mutual support, shared secrets and the imaginative play enjoyed by typical sibling pairs. They fervently envied the freedom to quarrel without fear of disaster. The wish for a sibling confidante was never more ardent than during clashes between their parents.
Which is the larger point. Autism isn’t just a health crisis; it’s a family crisis that impacts all members. Sometimes the impact on siblings can be positive. Aware of their comparative good fortune, these siblings were inclined toward sacrifice and mature beyond their years. Most were prepared to assume full responsibility for adult siblings in later years, and many enter an array of helping professions. But until we recognize autism’s collateral effects and attend to the special needs of the whole family, we will not really be grappling with the far-reaching but deeply felt impact of this disorder.