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."
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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.
Harris has made the sibling groups a regular part of her school's curriculum. These groups generally include recreational and therapeutic activities, including art therapy, conversation guided by facilitators, the enticement of pizza or other children-friendly snacks and no parents listening.
The toll on the siblings of autistic children was painfully obvious at several recent support groups in Scarsdale, New York, and on the Upper West Side of Manhattan. This reporter was allowed to observe two dozen children from the ages of five to 11.
Alice, who is 11 and has a six-year-old autistic brother, complained that "when you have a problem you don't get the attention you want." When her mother goes out to walk the dog, leaving Alice in charge, the girl said she was frightened that her brother would bolt from the house and "get lost, run over or die in the road."
Lauren, five, said that her seven-year-old sister could not talk and "so all she says is, 'Ugh, ugh, ugh."' The group leader asked how that makes her feel. "Sad," Lauren whispered.
Deborah, nine, grumbled about being tired all the time because her seven-year-old autistic sister was often awake and noisy through the night. Deborah also said she wished she could argue with her sibling. "I'm the only one in the whole fourth grade who isn't allowed to have a fight," she said.
Jonah, seven, and Max, 10, commiserated that their autistic brothers, 10 and eight, sometimes waited too long to go to the bathroom and had accidents. Ryan, eight, described his brother going from cabana to cabana on a family vacation and eating other people's fruit. All three boys said they missed being able to talk about sports with their brothers.
Harris' research shows that children can engage autistic siblings in simple games, which improves the normal youngster's quality of life, even if the autistic sibling is largely indifferent. This technique is regularly used at the Alpine Learning Group in Paramus, New Jersey, where Jeffrey Parles, 11, taught his 14-year-old brother Andrew to play Nok Hockey and shoot baskets.
Dr Bridget A. Taylor, one of the founders of Alpine, Andrew's school, said that younger siblings like Jeffrey "don't know anything different" and thus slide naturally into an adult role. They are also so attuned to their parents' stress and heartache, Taylor said, that they hide their own feelings.
Even in support groups, children resist talking about life with an autistic sibling. Jen Clark, a group leader on the Upper West Side, said that when asked what was different about their own lives, they commonly answered "nothing" or "it's exactly the same." Clark, who also works as a private behavioral therapist, said some families were uneasy when their children complained about their autistic siblings.
One father, for instance, listened as his 10-year-old daughter begged for another sibling, without autism, so she could "see what it's like to have a normal life." The father, who said his daughter had ample opportunity to "process these feelings" in therapy and a support group, said he believed that many of her complaints were about the "routine struggles" of being a sibling and an "obsession with wanting attention."
Even when parents give them explicit permission to vent about an autistic sibling, many children choose silence, one of many ways they may try to protect their overburdened parents. An example is Amy Chiappiniello, 14, who has a 13-year-old brother, David, with severe autism. Amy's mother, Lori Chiappiniello, talks freely of the chaotic years when David destroyed furniture, left teeth marks on the mantel and broke windows. She encourages Amy to discuss that terrible time, but the girl says she does not remember.
Later, in an e-mail message, Amy was freer with her feelings. Therapy was a waste, she wrote, "because I realized they couldn't do anything so I just shut down."
"I keep it all to myself," Amy added. "But when I can't keep it in any more, I just sit in my room and cry for hours. If my parents catch me crying, I just say hormones kicked in and sometimes that's true."
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