Considering the Needs of Siblings of Individuals With Asperger Profiles

By Carol M. Singer Ed.D. Psychologist in Private Practice
Article

It is important that families of children with Asperger profiles also consider the special needs of the neurotypical (NT) siblings of these children. The good news is that studies comparing “typical” siblings of children with special needs to matched siblings have found the first group to have no greater chance of having psychological problems than matched sibling groups. In fact, some positive characteristics have been found to be more prevalent in siblings of children with special needs, such as: greater tolerance and understanding of others, more altruistic behavior, increased flexibility and maturity, and a greater likelihood of choosing careers in education and human services. Of course, siblings can be stressed as well as potentially strengthened by having a brother or sister with special needs, and it is more realistic to view the relationship on a mixed continuum of positive effects and special concerns that need to be addressed. There is no simple formula for determining what each sibling’s experience will be. The outcome for a particular sibling is based on an interaction of factors such as: the sibling’s personal characteristics, the nature of the other child’s special needs, and the qualities of the family and community in which they live. Each child is affected differently and the impact changes throughout the lifespan.

The special needs of the NT sibling(s) can be classified into four categories. These individuals need information, need to have their feelings validated, need to have expectations clarified, and, when necessary, need help dealing with peer and community reactions. This article will address these needs as they specifically apply to siblings of individuals with AS.

Providing Information

Whenever possibly, the autism spectrum diagnosis (ASD)  (link to glossary page) should be disclosed to the child with an ASD diagnosis before it is explained to siblings. Once the child with ASD appears to be comfortable discussing the diagnosis with family members, you can share the label with siblings. Until then, use descriptive language but no label.

It is important to provide siblings with developmentally appropriate information about ASD. Children under 8 years old need factual information and concrete explanations. Because children at this stage have difficulty processing more than one piece of information at a time, it is important not to overwhelm the young child with too much information at once. Examples of simple explanations are: “She plays the same thing over and over because she doesn’t think it’s fun to try new things,” or “He’s flapping his hands because it helps him calm down.” Parents should explain that different kids have different needs; what helps the sibling with AS may not help the other sibling and vice versa.

Sometimes children engage in a type of magical thinking where they think that their actions or angry thoughts caused their brother or sister to have AS. It is important reassure siblings know that having an Asperger profile is not anyone’s fault; it is something some people are born with. Sometimes children also have to be reassured that ASD is not contagious like a cold or the flu!

Neurotypical siblings require a balanced presentation of both the special strengths or talents as well as the challenges of the individual with AS. Siblings usually benefit from having opportunities to meet with service providers (psychologists, social workers, licensed mental health workers, guidance counselors) to learn more about their special sibling’s strengths and challenges, and how these are being addressed. Service providers can also help young children to better understand how their siblings with Asperger profiles are experiencing their surroundings. For example, a young child might need help understanding what it feels like to be sensitive to touch or sound. Perhaps a demonstration of metal scratching a chalk board could be used to show how sound can be unpleasant to people with ASD. Sometimes siblings might need professional help figuring out which of their sibling’s behaviors should and should not be tolerated, or to teach the NT sibling better ways to interact with their brother or sister.

Professionals might meet with the whole family to help them set up a plan of what to do in the event of outbursts or difficult behaviors. Any plans should include clear rules for when the sibling(s) should get help from an adult rather than try to handle the situation by themselves.

Validating Feelings

Young children benefit from opportunities to express their feelings about their sibling’s special needs and behaviors. Useful activities could include reading books about ASD, making your own book, or using puppets, dolls, or stuffed animals to facilitate the expression of feelings. It is important to let your child know that it is understandable and all right to feel angry, embarrassed, jealous, neglected, worried or any other feeling they might have about their brother or sister. It should be emphasized that siblings often have these feelings and that they are not “bad” for having them.

Children with Asperger profiles are often part of their sibling’s community at school and other outside activities. The NT sibling is likely to find him/herself in situations where s/he may need to explain to others unusual behaviors of the sibling with ASD. After helping siblings to better understand ASD, they can be helped to learn to explain what ASD is to others. Parents or professionals can help by providing opportunities for children to rehearse or practice explaining, through puppets or role-play.

Accepting Differences in Parental Rules and Expectations

In addition to providing information, and validating sibling’s feelings, parents often find it is necessary to explain why their rules and expectations may be different for the child with ASD. For example, the child with ASD may be allowed to spend more time at the computer or to complete homework at school instead of at home. This can appear unfair; it needs to be addressed and explained at a level the NT sibling can understand, for example: “Your brother needs special teachers at school to help him organize his homework,” or “The computer helps your sister calm down when she feels over-stimulated.” These responses may potentially evolve into more extensive discussions about the learning style or sensory issues of the child with ASD.

Sibling Groups

Some children may benefit from sibling support groups or sib-shops. This can be particularly useful when the sibling does not know other siblings of children with ASD. It can provide an opportunity to find out that they are not alone. Sibling groups can promote an atmosphere in which siblings are more likely to express negative emotions. They may feel safer to do so because they are in the presence of others going through similar experiences, and because they don’t have to worry about hurting or angering their own family members. Siblings can also use the groups to brainstorm ideas about how to handle difficult situations.

Issues in the Middle Childhood Years

Children aged 9 to 12 years need to be encouraged to pursue their own interests. This helps them focus outside the stress that having a member with special needs may have on the family. It also helps them see themselves as more than so-and-so’s brother or sister. Children at this age often develop an increased understanding of the impact of their sibling’s special needs on their parents. In some cases, NT siblings may feel they need to achieve to make up for the stress caused by their siblings challenges. During middle childhood or later, NT siblings may feel more obligated to take care of the sibling. They may feel restrictions due to care-giving responsibilities, such as financial or time constraints related to being dragged to their sibling’s therapy or other appointments.

This is the time that children become aware that their parents are not perfect! Children may become competitive with or critical of their parents around how to best manage the behavior of their sibling with special needs. It can be helpful to admit that you don’t have all of the answers. This is an opportunity to provide a more realistic picture of parents as people coping, rather than as superheroes whose achievements the youngster can never equal. It is also important not to put the sibling in a parenting role with the child with special needs. Try not to restrict the role of the sibling to that of a caretaker. Let them know that they can help or teach but it is important for them to have different ways to interact that are also fun.

During this stage, children may become more vulnerable to the reactions of peers. They may be embarrassed about bringing friends home to play. They may feel guilt that they have friends and their sibling does not. Sometimes siblings may find themselves in a position of having conflicting loyalties between peers and family. If siblings become protective when a brother or sister is teased, it is important to reassure the child that s/he is not the only protector. That is the parent’s job as well. Try to get help from teachers and school staff for the sibling, as well as for the child with ASD, when there is teasing at school.

When siblings witness cruel behavior towards the child with ASD, or are the target themselves of school-mates saying insulting things about their brother/sister, it is imperative from the beginning that adults get involved. This includes parents as well as school personnel. Siblings should be encouraged to share this information with trusted adults as soon as it occurs. Parents can use it as a chance to discuss with all the children in the family how to choose friends. The sibling, along with the child with ASD, will need to develop strategies with school guidance staff for dealing with teasing or bullying.

Issues in Adolescence

During adolescence siblings are able to reason abstractly and can see the big picture, putting together many facts at once. They can become anxious about a sibling’s future, and to some extent may begin to wonder what their own responsibility should be. Sometimes having a sibling with ASD can interfere with establishing a sense of autonomy. The NT sibling can feel guilty as s/he moves forward toward relationships, higher education or jobs, while the brother/sister with ASD may be developing more slowly or struggling. Siblings might feel like they are abandoning their parents as well. It is important to reassure your adolescent that things are being taken care of, and that it is important that they keep moving forward in their own individual lives.

Issues in Adulthood

As siblings become young adults, there are three main areas of concern: guardianship, their own family, and continued involvement. Regarding guardianship, questions that might arise are: What will be my financial responsibility in the event that my sibling cannot support him/herself? Will my sibling require a guardian if my parents are not around—and who will that be?

Questions about family might include: Will my spouse accept my sibling? What are the chances that I might have children with ASD? How will I balance my responsibilities towards my new family and towards my sibling with ASD? How will my children be affected by having an aunt or uncle with ASD? Will my sibling live with me?

Questions about continued involvement might include: How often should I visit my sibling? Should I be my sibling’s advocate? It is important to meet together as a family to discuss these issues and get input from everyone, including the sibling with ASD. Meetings should be scheduled at regular intervals to revisit the issues.

Summary

In summary, there are many ways that parents and professionals can assist the siblings of individuals with ASD. Sibling’s needs change throughout the lifespan. It is important to take into account the sibling’s developmental stage when addressing these needs. The four areas that should be addressed are: providing information, validating feelings, clarifying expectations, and helping with peer and community reactions. A clear distinction should be made between the sibling and parenting roles according to each developmental stage. Lastly, sibling support groups can be beneficial. Considering these factors is of utmost importance since the sibling relationship is often the longest relationship within families.