Twelve-year-old Nathan Weiner
does not want to admit it, but he did not want to sit next
to his brother, Daniel, in Sunday school one morning last
September because it embarrassed him. Nathan was not embarrassed
because Daniel is three years younger. It is because Daniel
is autistic. "There were some children in the class
who hadn't met Daniel yet," Michelle Weiner, their
mother, said. "This was Nathan's involuntary introduction
of his brother to those children. Nathan didn't want
to be Daniel's caretaker, and he didn't want to
be associated with him." Nathan said, "I love
my brother the same no matter what he is." But Nathan's
disabled brother can be unpredictable.
It is hard enough being a
new adolescent, like Nathan. It is even harder when a new
adolescent is different because of a developmentally disabled
brother or sister at home. "You want to be like
everyone else, and you're not," said Mary Kay McGuire,
director of the Sibling Support Program at the Advocate
Illinois Masonic Medical Center.
Only a tiny percentage of children with disabled siblings
make their way to a support group, and few are of junior
high school age. For many of them, bringing a new friend
home to meet the disabled child is the hardest part of it
all, Ms. McGuire says. "It becomes a sorting
process," she said of making friends. The ones who
are nice to the disabled child or who do not make fun are
the ones who are kept. "The ones who don't
hit the family's benchmark are discarded and not invited
back."
"At about 4 years of
age, the teasing starts and lasts until high school,"
she said. The normal child hears the sibling called "retarded"
or "weird." "Eight-year-olds get embarrassed
easily," she said. "When these kids get to be
11 or 12, it gets rough and stays rough." Autistic
siblings may have odd mannerisms, Ms. McGuire said. They
might flick their fingers in front of their faces. Or they
might shout "no, no, no, no" when someone touches
something of theirs. Nathan's brother often recites
long stretches of dialogue from television commercials.
"There's no question that teenagers love the disabled
sibling deeply," said Dr. Carol Rolland, a developmental
psychologist at Advocate Illinois Masonic. The teenager's
love often manifests itself in providing care for the sibling,
but in the extreme this may interfere with the teenager's
own development and formation of an identity.