There are special demands on siblings. Click here for important information and practical suggestions for helping and supporting siblings.
Sources of Stress for Siblings
Not all siblings will experience these stressful issues, but here are some to be aware of:
The suggestions provided below are things parents can do within the family to help a young sibling understand what autism is all about, to improve interactions among the children in the family.
Explaining Autism to Children
It is important that your children know about autism and that the information you give them is appropriate for their developmental age. From early childhood, they need explanations that help them understand the behaviors that are of concern to them. Remember to adjust your information to your child’s age and understanding. For example, very young children are mostly concerned about unusual behaviors that may frighten or puzzle them. An older child will have concerns of a more interpersonal nature, such as how to explain autism to his/her friends. For the adolescent, these concerns may shift to the long-range needs of their sibling with autism and the role they will play in future care. Every age has its needs, and your task is to listen carefully to your child’s immediate concerns.
Another key to success is to remember that children need to be told about autism again and again as they grow up. Young children may use the words they hear us use, but not understand the full meaning of those words until they are much older. Don’t be misled by a young child’s vocabulary of words like “autism” or “discrete trial.” That does not mean the terms have real meaning for him/her. Just as you would not expect an early conversation about the obvious physical differences between boys and girls to constitute a sufficient sex education for children 5 or 10 years later, similarly, you must explain again and again, in increasingly mature terms, what autism is all about.
Helping Your Children Form a Relationship
Because of the nature of autism, it is usually difficult for a young child to form a satisfying relationship with a brother or sister who has the disorder. For example, your child’s attempts to play with his/her brother are probably rebuffed by his ignoring her, fall flat because of his lack of play skills, or end abruptly because his tantrums are frightening. How many of us would keep trying to form a friendship with someone who turned her back when we spoke to her or, even worse, seemed angry when we approached? It is not surprising that young children may become discouraged by the reactions they encounter and seek playmates elsewhere.
The good news is that young children can be taught simple skills that will enable them to engage their brother or sister in playful interactions. Research has shown that siblings can learn basic teaching strategies to engage their brother or sister with autism. These skills include things like making sure they have their brother’s attention, giving simple instructions, and praising good play. One research study showed that videotapes made before and after the children learned these skills showed in a very touching manner that, after training, they played together more and seemed much happier than they had been prior to training.
Along with ensuring the child with autism is a fully integrated member of the family, it is important to remember that other children in a family need their times to be special. Families are often urged to find some regular, separate time for the children in their family who do not have autism. It may be one evening a week, a Saturday morning, or even a few minutes at bedtime each night. If your child with autism has a home-based program or exhibits serious management problems, you may have neither the stamina nor the energy to give your other child exactly the same amount of attention. It is not necessary that everything in childhood be exactly the same. What is important is the opportunity to feel special to your parents and to feel an overall atmosphere of equity in your home.
Not Everything as a Family
There are activities that should be shared by the entire family and those that should not. Along with having regularly scheduled special times for each child, it is also important to remember that there will be some events when one child in the family deserves to be the focus of everyone’s attention. Children have told us that it is sometimes frustrating to have to do everything with their brother or sister with autism. In fact, there may be times when it may not be fair to insist that he or she be included. For example, if your child with autism cannot sit still for a school play, then it may be better if he or she stays home while your other child performs.
Being the brother or sister of a person with autism does not end with childhood. This is a lifetime relationship that matures and grows over the years. The concerns of an adult sibling will be different from those of children. For the young adult, questions may focus on his/her own plans to have children and be concerned about whether there is a genetic component of their sibling’s autism. In some cases, young adults may also feel a keen sense of responsibility for their brother or sister with autism that makes it difficult for them to leave home and begin an independent life.
It is important that parents discuss with their adult children the expectations they have in caring for the person with autism, as well as reassuring them about the legitimacy of assuming their own role as adults.
The questions of the role of the adult child become most acute as parents age and begin to anticipate the point when they will no longer be able to continue to care for their child with autism. If the person with autism is not already living outside of the home, this may be a time when placement in a group home or supervised apartment becomes important. In families where such care is necessary, adult children and parents must together address the question of who will assume guardianship of the person with autism when the parents die.
It is not easy for any of us to talk about our own death, and both you and your child may shy away from the conversation. Nonetheless, your adult children need to understand the financial plans you have made, the care arrangements in place, and your own expectations for them. Having these difficult conversations will ultimately be a gift to your adult children who will know they can honor your wishes. click here for more information on Special needs planning and guardianship.
Sibling Groups and Other Resources
A problem frequently reported to clinicians by siblings is a sense of isolation. An ideal means of combating this isolation is to help the sibling connect with other siblings of children with autism. Peer support groups for siblings of children with autism and related disorders are becoming more available. The Sibling Support Project of The Arc of the United States, based in Seattle, Washington, is one example. It offers a range of information on siblings of children with disabilities, including reading lists for children and adults, information on local sibling group meetings, information on facilitating sibling discussion groups, and online resources.