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Media Relations

Family stress and autism go hand-in-hand

When children are diagnosed with autism spectrum disorders, their families often find themselves dealing with financial and social challenges, as well.

The additional stress can be substantial, taking its toll on the whole family and even contributing to a high divorce rate, said Cathy Pratt, director of the Indiana Resource Center for Autism, which is part of the Indiana Institute on Disability and Community at Indiana University Bloomington.

Fifteen years ago the incidence of autism was 1 in 5,000, compared to today's rate of 1 in 150, according to the Centers for Disease Control and Prevention. While an ASD diagnosis can alter parents' dreams for their children, they should not lose hope, Pratt said. Much has been learned about ADS in the last 15 years, she said, and research into causes and interventions continues to grow at an amazing rate. Below are tips to help parents and families.

• Set priorities and make a plan. Identify the top few issues and needs for your family and then develop a plan and enlist others in achieving the plan's priorities.
• Intensive and ongoing interventions can have a positive long-term impact on your child. In addition to pursuing structured programming/educational options, realize that your child is learning continually. Be prepared to continually teach, coach and guide your child in simple and complex learning and social situations.
• You will serve as your child's case manager and lifelong advocate, so organizing information about your child is crucial. IRCA has a Record Book for Individuals with Autism Spectrum Disorders -- more information about this tool is online at http://www.iidc.indiana.edu/irca/fpublications.html.
• Take care of yourself and your health. You need exercise, rest, laughter and time with friends and others. Families comment that having a child with autism is not a death sentence; it is a life sentence. Maintain your stamina. Practice staying calm and finding humor each day.
• Simplify your and your child's life. Establish routines and structure, although your child's routine should not be too rigid. Use visual supports in your home to clarify expectations and routines.
• Learn to be consistent with praise and positive information. Minimize negative comments and punishment. Children will not learn by being told what not to do; instead, they need continual and direct guidance on expected behavior.
• Work on establishing positive relationships with professionals. You will need to work together closely to resolve difficult issues. Focus your efforts on attacking problems -- not each other.
• Celebrate and build upon your child's interests and accomplishments. Be creative. Realize that these interests and strengths could lead to a career.
• Small steps may be major accomplishments for your child. Acknowledge these and celebrate.
• Find leisure and recreational activities that the family can enjoy together. Work with the school to teach skills that will facilitate your child's involvement in these activities.
• Kids grow up, so start early to encourage and enhance behaviors that will help your child become more successful as an adult. Do not encourage behaviors that will minimize opportunities.
• You can't do it alone, so ask for and accept help from others.

Facts about autism:

What: Autism is a pervasive developmental disability that impairs one's thinking, feeling, language and the ability to relate to others. It begins before age 3 and extends throughout and individual's life.

On the spectrum: Autism is referred to as a spectrum disorder to signify differences among a group of people who share a common diagnosis. Even though individuals diagnosed with an autism spectrum disorder share a common set of behavioral characteristics, no two individuals will be alike. Autistic Disorder, Asperger's Disorder and Pervasive Developmental Disorder Not Otherwise Specified are often called autism spectrum disorders.

Cause: Once thought to be caused by inadequate parenting, science has shown Autism Spectrum Disorder to be a neurological disorder rooted in genetic and metabolic causes.

Cure: None.

Treatment: Many individuals with autism can make great strides in developing skills that will allow them to be independent in most features of daily life. Such progress, however, depends very much on early diagnosis paired with early and continuous intervention programs designed to promote the social, communication and adaptive abilities of young children and families.

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