When Mark Plage, 15, forgets to padlock the door of his bedroom, his 13-year-old autistic brother, Derek, barges in and leaves the place a shambles. When Mark tries to toss a football with Derek, the boy turns his back and walks away.
Mark's mother, by her own admission, used to scream at him for the smallest thing, unable to contain her frustration with Derek. Mark often wished she would come to his ice hockey games with his father. But Debi Plage had to stay home with her disabled son.
Mark recounts these experiences without reproach and with insight well beyond his years. When Derek "messes something up," Mark said, "I just fix it." As for his brother's inability to play, he said, "I know that it's not that he won't do it, but that he can't."
His mother's rages were "harder to deal with," Mark said, but "after a while, I realized she wasn't really yelling at me."
He can even brush aside her occasional threats to leave home and never come back. "She was just saying stuff because she was really upset."
Siblings of children with any disability carry the burden of extra responsibility and worry for the future, though they are also enriched by early lessons in compassion and familial love. But autism, a brain disorder that affects communication and social interaction, is in a class by itself in the heavy toll it takes on siblings, according to educators, therapists and a dozen scientific studies.
With rare exceptions, no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor-intensive, and managing challenging behavior requires vigilance. Also, autistic children can be indifferent to loving overtures, which is painful to siblings, some of whom must literally show a brother or sister how to hug. Finally, some autistic children have raging tantrums, destroy the belongings of others and behave in peculiar ways, which can be frightening or embarrassing to siblings and create an environment of unpredictability similar to that in families with an alcoholic member.
"There's bound to be resentment when the emotional and financial resources are all wrapped up in one kid," said Don Meyer, director of the Sibling Support Project, run by ARC, formerly the Association for Retarded Citizens.
Much has changed since Meyer's first support group, in 1990, when most of the children in it had siblings with Down syndrome or cerebral palsy. Now, the siblings of autistic children dominate ARC's 160 sibling support groups nationwide. And groups just for siblings of autistic children are spreading.
The focus has changed partly because of the spike in diagnoses of autism, experts say. But it is also because of the recent acknowledgment of the impact on other children in the household, said Dr. Sandra L. Harris, founder of the Douglass Developmental Disabilities Center at Rutgers University, one of the nation's first schools for autistic children and a leader in research and programming for siblings.
Among Harris' innovations is formal training for siblings so they can engage an autistic brother or sister in play, using techniques widely considered the most effective in the classroom. Harris encourages parents to discipline autistic children to make a statement about fairness to other children. She also urges families not to take togetherness to extremes. A normal child's school play or birthday celebration, for instance, need not be upstaged by the outburst of an autistic sibling, who might better be left at home.