How
Do Families Learn to Cope?
The
task of rearing a child
with autism is among the most
demanding and stressful that a family
faces. The child's screaming fits
and tantrums can put everyone on edge.
Because the child needs almost constant
attention, brothers and sisters often
feel ignored or jealous. Younger children
may need to be reassured that they
will not catch autism or grow to become
like their sibling. Older children
may be concerned about the prospect
of having a child with autism
themselves. The tensions can strain
a marriage.
While
friends and family may try to be supportive,
they can't understand the difficulties
in raising a child with autism. They
may criticize the parents for letting
their child "get away" with
certain behaviors and announce how
they would handle the child. Some
parents of children with autism feel
envious of their friends' children.
This may cause them to grow distant
from people who once gave them support.
Families
may also be uncomfortable taking their
child to public places. Children who
throw tantrums, walk on their toes,
flail their arms, or climb under restaurant
tables to play with strangers' socks,
can be very embarrassing. Janie's
mother found that once she became
willing to explain to strangers that
her child has autism, people were
more accepting. Paul's mother has
learned to remind herself, "This
is a public place. We have a right
to be here."
Many
parents feel deeply disappointed that
their child may never engage in normal
activities or attain some of life's
milestones. Parents may mourn that
their child may never learn to play
baseball, drive, get a diploma, marry,
or have children. However, most parents
come to accept these feelings and
focus on helping their children achieve
what they can. Parents begin to find
joy and pleasure in their child despite
the limitations.
Support groups
Many
parents find that others who face
the same concerns are their strongest
allies. Parents of children with autism
tend to form communities of mutual
caring and support. Parents gain not
only encouragement and inspiration
from other families' stories, but
also practical advice, information
on the latest research, and referrals
to community services and qualified
professionals. By talking with other
people who have similar experiences,
families dealing with autism learn
they are not alone.
The
Autism Society of America has spawned
parent support groups in communities
across the country. In such groups,
parents share emotional support, affirmation,
and suggestions for solving problems.
Its newsletter, the Advocate, is filled
with up-to-date medical and practical
information.
Coping
Strategies
The
following suggestions are based on
the experiences of families in dealing
with autism, and on NIMH-sponsored
studies of effective strategies for
dealing with stress.
Work
as a family. In times of stress,
family members tend to take their
frustrations out on each other when
they most need mutual support. Despite
the difficulties in finding child
care, couples find that taking breaks
without their children helps renew
their bonds. The other children also
need attention, and need to have a
voice in expressing and solving problems.
Keep
a sense of humor. Parents find
that the ability to laugh and say,
"You won't believe what our child
has done now!" helps them maintain
a healthy sense of perspective.
Notice
progress. When it seems that all
the help, love, and support is going
nowhere, it's important to remember
that over time, real progress is being
made. Families are better able to
maintain their hope if they celebrate
the small signs of growth and change
they see.
Take
action. Many parents gain strength
working with others on behalf of all
children with autism. Working to win
additional resources, community programs,
or school services helps parents see
themselves as important contributors
to the well-being of others as well
as their own child.
Plan
ahead. Naturally, most parents
want to know that when they die, their
offspring will be safe and cared for.
Having a plan in place helps relieve
some of the worry. Some parents form
a contract with a professional guardian,
who agrees to look after the interests
of the person with autism, such as
observing birthdays and arranging
for care.
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an Autism Lawyer in Any State:
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