I am really excited to share this guest post today from Rebecca. Rebecca is a school psychologist who developed a program for siblings of children with autism. This is an often forgotten about area of need that can make a major impact on the emotional well being of a family. Supporting siblings is critical to helping those individuals understand and have a meaningful relationship with their brother or sister with autism. If you are interested in writing a guest post for The Autism Helper – click here.
Early in my career, I had the opportunity to design and run a sibling support group for children with an autistic sibling. The prior year, I had worked at a private school for autism in Princeton, NJ. Not only did I work with autistic children, I had daily interaction with parents and provided respite services. In talking with parents of autistic children, I learned that families often lack emotional support. After doing additional research, I learned that siblings, specifically, experience higher levels of stress than other family members. The research also said that it was helpful for siblings of autistic children to share their concerns and feelings with others in a group.
I initiated a support group within an elementary school setting where I was a counseling intern. I had four children in the group, and we met together once per week for six consecutive weeks. It was important for me to have an understanding of child development in order to focus on appropriate topics. At the age of 6 through 12, children are becoming aware of the differences between people. They are able to understand a definition and explanation of their sibling’s needs when presented in terms they understand. They may worry that autism is contagious or wonder if something is wrong with them, too. They may also experience guilt for having negative thoughts or feelings about their sibling, as well as guilt for being the child who is not disabled.
The major themes we covered included feeling identification and coping, education, differences and similarities, future concerns, and affirmation of feelings. My main goal was for the children to develop coping and communication skills through discussions, creative activities, and games. I was lucky to have a group of amazing kids. The first day, I had the children fill out a quick form about their feelings in a multiple choice format. The children were so open and honest, it was easy for me to select goals to work on with each individual child. For instance, one child marked that he did indeed feel that he could “catch” autism from his brother.
Initially, we completed ice breaker activities and talked about feelings and the importance of identifying and sharing those emotions. It was great to see how quickly the children opened up to one another. The first day, I had to say very little toward the end of group. They revealed their frustrations, their hopes, and celebrated the triumphs of their brothers and sisters. Over the weeks, the children felt increasingly at ease with one another and shared more and more. I was struck not only by their candor, but by their ability to see the beauty in day to day successes. Ultimately, they were able to identify their own strengths and uniqueness that made them special.
Outside of sibling support groups, parents can help by keeping the lines of communication open. Children need to know what the disability is and what to expect. Parents can explain that all individuals, whether disabled or not, have strengths and weaknesses. It can be helpful to teach ways to interact and help with the sibling. In addition, open discussion should exist where family member’s positive and negative feelings are expressed. Children may need particular help with coping with stressful events such as peers and public reaction, as well as unexpected changes in family plans.
My sibling support group took place 14 years ago, about when autism rates started to increase. I have thought of those children often, and wonder how they are today. My calculations place them at about 23. My goal now is to find at least one of them so that I can see how they and their families are doing now. Stay tuned!
Rebecca Galusha is a School Psychologist who has worked in the public school setting for 13 years. She lives in New Jersey with her husband and three children.