April 16, 2010
Living with Autism
Editor’s note: The following information was provided at the request of the Message by Trista Neisen at St. Mary’s Medical Center in Evansville. Neisen cites “Autism Speaks” as her source for the article.
It is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. (Related: Autism Hero award to St. Mary’s)
Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are:
- PDD-NOS (Pervasive Developmental Disorder — Not Otherwise Specified)
- Asperger’s Syndrome
- Rett Syndrome
- Childhood Disintegrative Disorder.
Many parents and professionals refer to this group as Autism Spectrum Disorders.
Autism affects the entire family but there are many resources available and many tactics that can help life run a little more smoothly.
Five tips for parents
- Learn to be the best advocate you can be for your child. Be informed. Take advantage of all the services that are available to you in your community. You will meet practitioners and providers who can educate you and help you. You will gather great strength from the people you meet.
- Don’t push your feelings away. Talk about them. You may feel both ambivalent and angry. Those are emotions to be expected. It’s OK to feel conflicting emotions. Try to direct your anger towards the disorder and not towards your loved ones.
- Try to have some semblance of an adult life. Be careful to not let autism consume every waking hour of your life. Spend quality time with your typically developing children and your spouse, and refrain from constantly talking about autism. Everyone in your family needs support and to be happy despite the circumstances.
- Appreciate the small victories your child may achieve. Love your child and take great pride in each small accomplishment. Focus on what they can do instead of making comparisons with a typically developing child. Love them for who they are rather than what they should be.
- Get involved with the Autism community. Don’t underestimate the power of “community.” You may be the captain of your team, but you can’t do everything yourself. Make friends with other parents who have children with autism. By meeting other parents you will have the support of families who understand your day to day challenges. Getting involved with autism advocacy is empowering and productive.
Five tips for brothers and sisters
- Remember that you are not alone! Every family is confronted with life’s challenges. If you look closely, nearly everyone has something difficult to face in their families.
- Be proud of your brother or sister. Learn to talk about autism and be open and comfortable describing the disorder to others. If you are comfortable with the topic they will be comfortable too. Love your brother or sister the way they are.
- Don’t be upset and angry for extended periods of time. While it is OK to be sad that you have a brother or sister affected by autism it doesn’t help to look constantly at the negative aspects. Your anger doesn’t change the situation; it only makes you unhappier.
- Spend time with your mom and dad alone. Doing things together as a family with and without your brother or sister strengthens your family bond. It’s OK for you to want alone time. Having a family member with autism can often be very time consuming, and attention grabbing. You need to feel important too. Remember, even if your brother or sister didn’t have autism, you would still need alone time with Mom and Dad.
- Find an activity you can do with your brother or sister. You will find it rewarding to connect with your brother or sister, even if it is just putting a simple puzzle together. No matter how impaired they may be, doing something together creates a closeness. They will look forward to these shared activities and greet you with a special smile.
Six tips for grandparents and extended family
- Ask how you can be helpful to your family. Your efforts will be appreciated whether it means taking care of the child so that the parents can go out to dinner, or raising money for the special school that helps your family’s child. It will warm your family’s hearts to know that you are pitching in to create support and closeness.
- Seek out your own support. If you find yourself having a difficult time accepting and dealing with the fact that your loved one has autism, seek out your own support. Your family may not be able to provide you with that kind of support so you must be considerate and look elsewhere.
- Be open and honest about the disorder. The more you talk about the matter, the better you will feel. Your friends and family can become your support system, but only if you share your thoughts with them. It may be hard to talk about it at first, but as time goes on it will be easier. In the end your experience with autism will end up teaching you and your family profound life lessons.
- Put judgment aside. Consider your family’s feelings and be supportive. Respect the decisions they make for their child with autism. They are working very hard to explore and research all options, and are typically coming to well thought out conclusions. Try not to compare children.
- Learn more about Autism. It affects people of all social and economic standing. There is promising research, with many possibilities for the future. Share that sense of hope with your family while educating yourself about the best ways to help manage this disorder.
- Carve out special time for each child. You can enjoy special moments with both typically developing family members and the family member with autism. Children with autism thrive on routines, so find one thing that you can do together that is structured, even if it is simply going to a park for fifteen minutes. If you are having a difficult time trying to determine what you can do, ask your family. They will sincerely appreciate that you are making an effort.