New York Times (12.10.04).
For Siblings of the Autistic, a Burdened Youth.
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Mark Plage, 15, right, says when
his autistic brother, Derek, 13, messes
up something, "I just fix it."
ORADELL, N.J. - 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. "I knew in the back
of my mind she'd never do it," Mark said. "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. "It's Johnny this, Johnny
that, the
Much has changed since Mr.
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 Dr. Harris's 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. Dr. Harris encourages parents to discipline autistic children, say,
with a timeout, 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.
Dr. 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, at
Jewish community centers in Scarsdale, N.Y., and on the Upper West Side of
Manhattan. This reporter was allowed to observe two dozen children from the
ages of 5 to 11, on the conditions that only first names be used for the
participating children and that autistic siblings not be identified.
Alice, who is 11 and has a
6-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, 5, said that her
7-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. Speech, occupational and behavioral therapists frequent the house,
all focused on her sister.
"A lot of people have to
work with her," Lauren said. "But one person left, so now there are
less people, and I like that better."
Deborah, 9, grumbled about
being tired all the time, because her 7-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, 7, and Max, 10,
commiserated that their autistic brothers, 10 and 8, sometimes waited too long
to go to the bathroom and had accidents. Ryan, 8, 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.
Maggie, 10, complained about
how uncompromising her younger brother could be. "It takes too much
time" to draw him a picture, she said, "because it has to be
perfect." And on the trampoline, he will play only one game, the Cow
Jumped Over the Moon. "He lies down and makes me jump over him, over and
over and over and over," she said.
Dr. Harris's 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, N.J., where Jeffrey Parles, 11, taught his 14-year-old brother,
Andrew, to play Nok Hockey and shoot baskets.
Jeffrey told his parents, Lisa
and Craig Parles, that he wanted to play Uno, a card game that relies on
matching colors and numbers, with Andrew, who is also mentally retarded, a
common combination. So the boys' parents asked for help from Andrew's teachers,
who guided Jeffrey through the first lesson one day recently.
Andrew, who barely speaks, was
not at his best that day. But Jeffrey was determined and well versed in the
basic techniques of behavior management. When Andrew's attention wandered,
Jeffrey tapped his shoulder. With simple one-step instructions, the younger boy
explained how to match cards.
Twice, eyes darting around the
room, Andrew mistakenly paired a yellow 7 and a green 5. Each time Jeffrey
re-established eye contact and gently corrected him. On the third try, Andrew
got it. Jeffrey rewarded him with a whooping high five. "He'll do better
the next time," Jeffrey said later.
The goal of teaching Andrew to play Uno was Jeffrey's pleasure.
But that does not mean the younger boy is free of responsibilities unusual for
his age. When the two brothers visit their grandparents, for example, Jeffrey
is a translator. He is the one who can tell whether Andrew is trying to say
"juice" or "cheese" and also can distinguish a
"fake" cry, which is best ignored, from a real one that requires
adult attention.
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'
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." Ms. 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, experts say, 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 tooth
marks on the mantel and broke windows. She encourages Amy to discuss that
terrible time, but the girl says she does not remember.
Mrs. Chiappiniello sent Amy to
karate lessons so she could protect herself if David tried to bite her or pull
her hair, and to a therapist to discuss her unusual childhood. She encouraged
Amy to seek peace and quiet, alone or with her friends, by staying with members
of the extended family, who all live on the same street in Stratford, Conn. She
even tells Amy that she "hates that David has autism" so her daughter
knows she is not the only one who feels that way.
Still, Amy resists her
mother's efforts to draw her out. "Is it hard sometimes?" Mrs. Chiappiniello
asked.
Amy replied dully, "Is
what hard?" She became animated only when the conversation turned to
people who tease or stare at her brother. "I give them an extra dirty look
with a swear or two," Amy said.
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."
Mark Plage, by his own
account, feels less distress. Derek can certainly be annoying, but Mark is used
to it and sees the silver lining. "He brings us together more, because we're
in it as a family," Mark said.
Still, he is hyper-vigilant,
more an auxiliary parent than a brother to Derek no matter how many times his
parents tell him that it is not his job. One blustery evening, for instance,
his mother was enjoying a cup of tea when, upstairs, Derek's steady gait turned
to jump-up-and-down pounding and his high-pitched singsong to a shriek. That
usually means his brother is happy, Mark said, but you can never be too
careful.
"I'm going up to check on
him," he said.