News and Knowledge

Note to readers: In each issue of The OARacle, we provide a helpful resource on a topic of interest within the autism community. This month’s article focuses on supporting siblings of children with autism. Special thanks to Beth Glasberg, Ph.D. for her contribution.

When a child is diagnosed with autism and begins intervention, parents are often given various protocols and guidelines to follow. The child with autism is identified as “the patient” or “the learner” and treatment begins. Unfortunately, this narrow focus on the individual omits a critical part of the picture. Children typically live in families, and family members impact upon one another. If one member of a family is socially aloof or aggressive, for example, this impacts upon every family member. Perhaps a mother needs to leave her job to manage a home-based educational program. Maybe a brother has to lock up his belongings to protect them. Because autism impacts the whole family system, rather than just an individual, it is helpful to think of each family member as a “patient” or “learner,” rather than just the one with the diagnosis.

Certainly, many therapeutic approaches acknowledge the pivotal role that parents play in helping their child with autism. Schools and community agencies often offer parent education and support opportunities. These strategies acknowledge the special needs of parents. In contrast, only a minority of intervention programs provide siblings with skills training or support. Nevertheless, siblings face tough challenges each day, like eliciting social responses from their brother or sister with autism, or answering questions from neighborhood kids. To support them in their challenges, siblings need their own “special ed”. Below is a proposed list of the top five curricular areas that “sibling special ed” might cover. These topics are primarily geared toward the home, as the most available option, but may also be targeted in sibling discussion groups or individual counseling sessions outside the home.

1. What is autism?

Defining autism, explaining related behaviors and discussing family adjustments are best presented as part of an ongoing, open-ended conversation. Some parents withhold information to shelter their child, but this may backfire as children create explanations for what they observe that may be worse than the truth (Brewster, 1982, Lobato, 1993). Other parents may offer one or two “big talks” about autism and then leave the subject off-limits. This may also promote misconceptions and confusion.

For example, as part of a study designed to clarify how siblings think about autism, I met with 63 siblings aged 5 to 17 and asked some general questions about autism. I also met with their parents and had them predict their child’s responses. The first question was, “Have you ever heard the word, autism?” While only 8% of parents predicted that their child would say no to this question, in fact 21% of siblings reported that they had never heard this term (Glasberg, 2000). Similarly, siblings who participated in this study expressed a number of surprising false beliefs. For example, 26% of siblings interviewed either thought that autism was contagious or weren’t sure. This contrasts with only 9% of parents who predicted these responses. Other myths created by siblings ranged from doctors giving a child autism at birth because he cried too loudly, to a concern that autism might evolve from witnessing an evil act as in the musical “Tommy” (Glasberg, 1998). Increased access to age-appropriate autism-related information may have prevented the formation of these erroneous beliefs.

Some parents wonder how to effectively share information. Guidelines include capturing naturally occurring opportunities, keeping explanations as simple as possible, and anticipating what might be comforting to the sibling. An illustration might involve a girl who is trying to play a game with her brother while he continually picks up the game pieces and “flies” them in circles. A father might approach the girl and say, “Thanks for trying to play this with your brother, but it looks like he prefers a different way to play right now. Autism makes it hard for him to use toys the way we expect, but there are other ways to play with him. Would you like me to teach you how you can help him play next time?” For a more detailed discussion of strategies for sharing information with siblings, see Siblings of Children with Autism: A Guide for Families, by Sandra Harris and myself.

2. How do I share my feelings?

Siblings are placed in difficult positions every day. The nature of autism requires some differential treatment by parents, and a great deal of family time, money and attention. Siblings may be embarrassed by public behaviors, or may be the victims of aggression. On the flip side, siblings often experience an intense pride in their brother or sisters’ accomplishments or in their own ability to help their brother or sister. Siblings need a way to let parents know how they are feeling. Parents can help siblings share their feelings by modeling sharing their own feelings and asking to hear about the sibling’s feelings. Strategies for siblings to share feelings at difficult moments may include writing notes to be read after a crisis has passed or using a code word to cue parents of a certain feeling in a public or heated setting. Once the value of communication is stated directly, parents and siblings can together define any potential obstacles and strategies to overcome them.

3. How do I answer questions or taunts from peers?

Most parents of children with autism have at least one story of when they were in the grocery store, mall, etc. and someone commented rudely about their child’s behavior. Even questions from well-meaning onlookers can sometimes be difficult to answer. Finding the right words to respond is a struggle. For siblings, whose understanding of the disorder, self-confidence, and ability to explain abstract topics is likely more limited than their parents, these situations prove even more challenging. The first way to help your child with this situation is to make sure that he/she understands autism. Your responses to questions that your child asks serve as a model for him/her to answer other people’s questions. Next, offer to practice these situations with your child. Consider role-playing, creating scripts, or making stick figure cartoon scenarios as vehicles for practice. Be sure to discuss how each of the characters in the practice situation is feeling as well.

4. How can I get my brother or sister to respond to me?

Siblings of individuals with autism need special skills to successfully “play” with their brother or sister. These skills also enable them to help their siblings accomplish daily tasks and to protect themselves from challenging behaviors. While some parents express fears of pressuring the sibling to be “a little teacher,” or altering the equality of the sibling relationship, research suggests that skills-training leads to positive outcomes. Celiberti and Harris (1993) taught siblings behavioral skills to facilitate play such as giving clear directions, using praise to reward behavior, and prompting to engage in play behaviors. They found that not only did the siblings learn these skills, but they were seen by independent raters as more confident, more interested in the child with autism, and more pleased by their interactions after acquiring these skills. Similarly, within the context of sibling discussion groups, a common feeling described is helplessness to elicit engagement from their brother or sister. In contrast, siblings in these groups who had either formal or informal behavioral training reported developing closer relationships with their affected siblings and expressed pride in their ability to help them. Such skills training might also help the sibling identify and avoid triggers to aggressive or other challenging behaviors. However, even trained siblings need to rely on parents to keep them safe. Together, a decision can be made as to the degree of supervision needed and a system can be devised as to what the sibling should do if he/she feels threatened.

5. How can I meet other siblings of children with autism?

Many siblings have never met another sibling of an individual with autism. This can lead to isolation and difficulty in finding an understanding ear. The most appealing option to remedy this is joining a sibling discussion group. Lobato and Kao (2002) studied the impact of participation in these groups and found that siblings benefited from increased knowledge about their sibling’s condition, high satisfaction, increased connectedness, and decreased behavioral problems; they maintained these gains at a three-month follow-up. Siblings that don’t have access to a local group can find other siblings online. Two sites to check include: www.thearc.org/siblingsupport and www.siblingsofautism.com. Finally, even reading about other siblings’ experiences may decrease isolation. Try Donald Meyer’s Views from Our Shoes for brief stories written by brothers and sisters of children with varied disabilities, including autism, at different ages.

References

Brewster, A. B. (1982). Chronically ill hospitalized children’s concepts of their illness. Pediatrics, 69, 355-362.

Celiberti, D. A., & Harris, S. L. (1993). Behavioral intervention for siblings of children with autism: A focus on skills to enhance play. Behavior Therapy, 24, 573-599.

Glasberg, B. A. (1998). The development of a child’s appraisal of a sibling’s autism. Unpublished doctoral dissertation. Rutgers, The State University of New Jersey.

Glasberg, B. A. (2000). The development of siblings’ understanding of autism spectrum disorders. Journal of Autism and Develeopmental Disorders, 30 (2), 143-156.

Harris, S. L. & Glasberg, B. A. (2003). Siblings of Children with Autism: A Guide for Families (2nd ed.). Bethesda, MD: Woodbine House.

Lobato, D. (1993). Issues and interventions for young siblings with medical and developmental problems. In Z. Stoneman & P. Berman (Eds.),The effects of mental retardation, disability, and illness on sibling relationships: Research issues and challenges (pp. 85-98). Baltimore, MD: Paul H. Brookes Publishing Co.

Lobato, D. J., & Kao, B. T. (2002). Integrated sibling-parent group intervention to improve sibling knowledge and adjustment to chronic illness and disability. Journal of Pediatric Psychology, 27, 711-716.

Meyer, D. (1997). Views from our Shoes. Bethesda, MD: Woodbine House.

Beth Glasberg, Ph.D. has both her doctorate and masters in clinical psychology. She has served as Director of Clinical Services at both the New Jersey Center for Outreach and Services for the Autism Community (COSAC) and the Rutgers Autism Program. Currently, Dr. Glasberg is a consultant with the Douglass Outreach program at the Douglass Developmental Disabilities Center in Piscataway, New Jersey. Co-author of a book on siblings, Siblings of Children with Autism: A Guide for Families, Dr. Glasberg has written many articles and book chapters on the subject of siblings, as well as other autism related topics.