The autism diagnosis and family stress
When children are diagnosed with autism, 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, says Cathy Pratt, director of the Indiana Resource Center for Autism (IRCA), 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 approximately 1 in 150. While an Autism Spectrum Disorder (ASD) diagnosis can alter parents' dreams for their children, they should not lose hope, Pratt says.
12 tips to help parents and families of autistic kids
- Learn to be consistent with praise and positive information, while you 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.
- Celebrate and build upon your child's interests and accomplishments. Be creative, and realize that these interests and strengths could lead to a career.
- 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.
- You will serve as your child's case manager and lifelong advocate, so organizing information about your child is crucial.
- 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.
- 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.
- You can't do it alone, so ask for -- and accept -- help from others.
- 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.
- 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.
- 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.
- Simplify your life and your child's life. Establish routines and structure, although the demands placed on your child should not be too rigid. Use visual supports in your home to clarify expectations and routines.
- Small steps may be major accomplishments for your child. Acknowledge these and celebrate!
So much has been learned about autism in the last 15 years, and, Pratt says, research into causes and interventions continues to increase at an amazing rate.
Your job as a parent is to help your child reach his or her potential -- whatever that may turn out to be. While you shouldn't expect the world, don't limit your hopes, either. Truly remarkable things are being achieved every single day by children with autism. Why not yours?