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, 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.

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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