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 toward the disorder and not toward your loved ones. When you find yourself arguing with your spouse over an autism-related issue, try to remember that this topic is painful for both of you; and be careful not to get mad at each other when it really is the autism that has you so upset and angry.
Try to have some semblance of an adult life. Be careful not to 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”. 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.
Remember that you are not alone. Every family is confronted with life’s challenges … and yes, autism is challenging … but, if you look closely, nearly everyone has something difficult to face in their families.
Be proud of your brother or sister with autism. 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. If you are embarrassed by your brother or sister, your friends will sense this and it will make it awkward for them. But, like everyone else, sometimes you will love your brother or sister, and sometimes you will hate them. It’s okay to feel your feelings. And, often it’s easier when you have a professional counselor to help you understand them. Love your brother or sister the way they are.
While it is OK to be sad that you have a brother or sister affected by autism it doesn’t help to beupset and angry for extended periods of time. Your anger doesn’t change the situation; it only makes you unhappier. Remember your Mom and Dad may have those feelings too.
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.
Family members have a lot to offer. Each family member is able to offer the things they have learned to do best over time. 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.
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. In this way you can be stronger for them, helping with the many challenges they face.
Be open and honest about the disorder. 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 teach 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.
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.
Source: This handout is excerpted from an article by family therapist Kathryn Smerling, PhD, that appears on the website of Autism Speaks. It was used with permission. www.autismspeaks.org.