By Jane Gross for the NY Times. Thanks to Susan Mendez
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 United States of Johnny.
Johnny is the sun in the family’s solar system.”
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.