Siblings: My Brother's Keeper

There is a Hindu proverb, Help your brother's boat across, and your own will reach the shore. But for many siblings of children with ASDs and related disabilities, reaching the shore comes at a price. Siblings of children with autism and related disabilities lead lives very unlike those of their neighbors who are a brother or sister of a typically developing child. To be sure, they laugh with their sibling and experience moments of joy. But they also have very different lives growing up as a sibling of a child with autism. QUALITY OF LIFE: The quality of life for siblings of children with autism often suffers. In one study anger was the most common response of the sibling, and aggression between the child with ASD and sibling, the most common problem. When facing difficulties with their brother or sister with ASD, siblings did not generally blame themselves or others. This and other studies of siblings of children with autism and related disabilities reveal two kinds of reactions . The majority are more serious, conscientious, tolerant of people different from themselves than their peers, and generally well adjusted. A sub-set develop emotional problems, such as depression. It is possible they may have been predisposed to those difficulties had they not grown up with a sibling with autism, but experiencing the inevitable family turmoil, precocious responsibility, feeling sorry, exposure to frightening behavior, empathetic feelings, physical violence making siblings feel unsafe and anxious, and relations with friends were affected negatively tilts the balance toward emotional problems. SIBLING ADJUSTMENT: Marci Wheeler wrote an excellent article containing guidelines for parents of children with autism in promoting siblings well-being and development. Key highlights can be found on-line at the Indiana Resource Center for Autism website: http://www.iidc.indiana.edu/irca/family/SibPerspect.html and are summarized below: * Siblings need open, honest communication. Siblings may be reluctant to ask questions due to not knowing what to ask or out of fear of hurting the parent. Because of the communication problems described earlier, parents may need to work harder at maintaining open dialogue. Developmentally appropriate information about autism can buffer the negative effects of a potentially stressful event. * Siblings need accurate, developmentally appropriate information about their brother or sister with autism. Young children react with anxiety to frightening behavior, like aggression or odd, repetitive movements. They need a brief, concrete explanation of the behavior and reassurance that they didnt cause their sibling to behave that way (a common misbelief). Older children fear what will happen to their sibling in school and community. They need to be assured you are preparing him or her and are working with the school to reduce problems. * Siblings need parental attention that addresses their individuality. Often the majority of family conversations revolve around the child with autism, sometimes even siblings achievements are eclipsed. Parents need to find time to single out specific things the sibling has done that are appreciated and worthy of praise, unrelated to the sibling with autism. * Siblings need 1-to-1 time with each parent. Parents need to find time each day to spend with siblings, listening to their concerns and celebrating their achievements. It doesnt need to be more than 10 or 15 minutes on weekdays, but undivided attention goes a long way. Going for walks or bike rides with siblings on weekends provides a great time for maintaining strong positive relationships. * Siblings need to be taught skills in playing with their sibling with autism. Discrete trial intervention methods can generally be taught to siblings easily. In my experience, younger children (4-6 years of age) take pride in being taught skills that they, in turn, can teach to their sibling. They are often great teacher/therapists. Siblings can be taught to use play as a teaching opportunity by breaking the steps in playing a given game or make believe activity into smaller steps, and rewarding their brother or sister for progress. * Siblings shouldn't be overly burdened with caring for their brother or sister with a disability. They should have choices about the amount and timing of their interactions with their sibling. They should be given brother-free time, and their room should be a sister-free zone. The latter may not be possible when bedrooms are shared. * Siblings need to be reassured they and their belongings are safe from their sibling. They should never be given the impression that they must tolerate being hit, shoved or worse, by their sibling. If a sibling provokes retaliation, the rules may differ, but in general, aggressive behavior toward siblings should not be tolerated. Similarly, they should have a place to keep their own toys and belongings so they cannot be damaged by a destructive sibling. OTHER THINGS PARENTS CAN DO to support the siblings of a child wiht autism: * Each child in the family should have responsibilities, including the child with an ASD. That ensures your other children see that family life is fair, and that you are treating the child with a disability as normally as possible. Naturally, you need to explain the limitations of the child with an ASD, but that doesnt mean s/he is free of responsibilities. Posting a list of chores for each child on the refrigerator door, with a star or point for each task completed, is a good way to make equitable treatment tangible. * When a sibling is upset about something their brother or sister with an ASD has done, it is important parents take time to listen and acknowledge they hear what is being said. It is a good idea for a parent to repeat back what they have heard the sibling say and or paraphrase it, to make it clear they understood their concern. After they have expressed their feeling, discuss strategies for managing their feelings with them. They will appreciate that their mother or father has taken them seriously. * Do normal things with the sibling with autism, if necessary leaving the brother or sister with a disability with another relative, baby-sitter or respite worker. Take the sibling and a friend to a preferred restaurant, fishing, or to a ball game, or another activity that would usually be difficult for the child with an ASD to tolerate. Give the sibling your undivided attention. Siblings need to understand that a normal life is possible. * Siblings need to be helped to understand they are not alone. Local advocacy organizations often organize sibling groups that meet regularly to discuss the kinds or problems other youngsters their age face. Most are facilitated by staff members or a parent to encourage opportunities not only to ventilate about siblings, but to encourage problem solving. Many also organize outings for siblings, such as bike rides, picnics, dances and other activities to encourage informal networking. * Embarrassment is a big problem for siblings. They need to be helped to develop strategies for dealing with questions from friends and strangers, ranging from unkind remarks, and even teasing or taunting their sibling. Some youngsters carry a small information card that explains that their sibling has autism, and that he isnt responsible for some of the unusual things he does. Others prefer to memorize a short script that explains the same information. The child needs to be helped to accept the idea that other peoples lack of understanding reflects more about them, than it does about themselves or their sibling. ...