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Dealing with the Emotional, Physical, and Financial Burdens of Autism

It's also important that you celebrate improvements, no matter how small. It's easy to keep thinking about how far behind your child is, but if you focus on the improvements he's made, you'll realize how far he's come. And be sure to share your joy in his progress with the people who love him and you.

Lastly, don't forget that your child is still your child, and that every child wants to feel loved by his parents. Any activity that you and your child enjoy together is precious, whether it's spending a half hour curled up on the sofa watching a favorite television show or going out for ice cream. While it's necessary to alter some of your ways of interacting with your child to facilitate his learning, it's equally necessary to maintain the basic loving relationship of parent and child, and if you're only thinking of yourself as his therapist, then you need to find your way back to being a parent again.

The Stress of Maintaining a Regular Family Life
Having a child with autism can change the family dynamics. Many parents – especially moms – can get so involved with the child with autism that they practically forget they have a spouse and other children. That's why it's important to develop interventions that are in the context of natural activities the whole family can enjoy. If you have other children, teach them how to interact with their sibling in positive, enriching ways. They can be great helpers. Research suggests that siblings of children with autism do not experience the high levels of stress that their parents do and are not excessively worried, so don't feel you have to "protect them" from the disability. And, as adults, siblings of children with autism have a unique understanding of what goes on in day-to-day life and can be especially compassionate professionals. I've seen many siblings go into the field of disabilities as a result of their childhood experiences.

Again, remember that interventions have to work for the whole family system. If a program is requiring you to do things that interfere with your family's routines, or if the program is teaching a child to use a behavior that does not fit with your personal or cultural values, you must tell the person who is designing the program.

And insist that you and your spouse spend time alone together and that you get breaks from your job as caretaker and therapist. Don't be afraid to ask for help from relatives, friends, and others. If some times of day are especially difficult for you, hire a helper or find a volunteer from your local youth group, high school, or college. You'll be a much better parent if you have help, and you'll be a much better spouse if you have some free time. A good marriage and a happy family life will do wonders for every member of your family, including the one with special needs.

Financial Stress
Dads, especially, feel stress in the area of finances.

Intervention for a child with autism can be very costly, and dads bear most of the financial burden in a lot of families. While no one will admit it, the truth is that agencies that are designed to help people in need – schools, insurance companies, centers for individuals with disabilities – are often reluctant to use their resources to help a child who will most likely need intensive intervention for many years. So not only do you have the stress of dealing with your child's severe disability, but the treatment you need to overcome it is expensive, and no one wants to pay for it.

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From Overcoming Autism by Lynn Kern Koegel, Ph.D. and Claire LaZebnik. Copyright © 2004. Used by arrangement with Penguin Group (USA) Inc.

If you'd like to buy this book, click here or on the book cover. Get a 15% discount with the coupon code FENPARENT.


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