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 Parents
Work to Acclimate Autistic Children to Normal Routines
It is a relentless, labor-intensive and harrowing task,
overwhelmingly performed by mothers, that tests the strength of
marriages, the resilience of siblings and the endurance of the
women themselves.
by Jane Gross, New York Times,
October 22, 2004
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Lisa Krieger
proved herself the equal of any presidential advance team in
planning a first communion for her daughter, Gina, who is 8
years old and autistic.
Months in advance, Ms. Krieger recruited other children to
rehearse walking down the church aisle with Gina, and videotaped
the procession so she could practice at home. She begged the
nuns not to change Gina's place in line, because she might
scream or wander off if faced with the slightest deviation.
Ms. Krieger made sure Gina's communion dress was not itchy and
let her try it on for a few minutes every day so she would not
yank it off when the time came. She found a supplier of
unconsecrated communion wafers so Gina would learn the taste and
not spit the host back at the priest.
And, on the big day in May, she stationed people throughout the
church in Washington Township, N.J., to whisper instructions if
Gina got confused. "The end result was she did beautifully," Ms.
Krieger said. "But you have to think about everything, know what
you're walking into and what's going to happen. I can't prepare
her for everything, but I try to eliminate as many variables as
possible."
Ms. Krieger's planning made possible what most parents take for
granted: a child's participation in family activities and
community events like a meal in a restaurant, a trip to Disney
World or a movie. None of these come naturally to children with
autism, a mysterious brain disorder that affects the ability to
communicate, form relationships, tolerate change and otherwise
respond appropriately to the outside world.
Exposing Gina to these experiences would have been unthinkable a
decade ago, but more and more families with autistic children
are finding that techniques that have proved successful in the
classroom - behavioral methods that evolved from the
psychologist B. F. Skinner, visual instruction and adaptations
of the environment - can be tried at home not only to maximize
learning for an autistic child but also to improve the quality
of life for the rest of the family.
If the skills and behavior of the autistic child improve,
experts say, parents and siblings have more choices of leisure
and other activities, and less sense of stigma and isolation.
"It doesn't matter if a kid can read and write and do algebra if
he can't go out to dinner with his family," said Bridget Taylor,
co-founder of the Alpine Learning Group in Paramus, N.J., a
school for autistic children that was the model for the
neighboring EPIC school, which Gina attends. "To me, half the
battle of autism is getting these kids to be active, functional
members of their families - and getting the families themselves
active and functional."
It is a relentless, labor-intensive and harrowing task,
overwhelmingly performed by mothers, that tests the strength of
marriages, the resilience of siblings and the endurance of the
women themselves, autism educators and medical professionals
say. For Ms. Krieger it has meant accepting that her husband's
patience with Gina is more limited than her own; being careful
not to overburden or ignore her 6-year-old daughter, Nicole; and
arranging occasional telecommuting so she can continue working
as the director of corporate finance for the Greater New York
Hospital Association.
Over the last decade, the number of autistic children receiving
special education services nationwide has grown to 140,000 from
20,000, according to the federal Department of Education. While
scientists debate what has caused the skyrocketing autism
caseload - a real increase in cases, better diagnoses, or the
decision not to institutionalize autistic children - there is no
question that more and more families are living like the
Kriegers, raising autistic children at home and trying to
acclimate them to normal activities and routines.
Except for guidance from educators, organized resources for
these families are scarce. In New York, there is a support group
for siblings on the Upper West Side and religious instruction
for autistic children at a few Westchester synagogues. There is
also a new Web site from the Autism Society of America and home
visits by therapists from special schools. But mostly there are
mothers with file folders of information, passed from hand to
hand. Fathers often take on extra responsibility for the other
children.
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