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
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, listed at the close of this pamphlet,
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.
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
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.
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.
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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