In this post, we will be referring to the sibling with Aspergers as the “Aspie” – and the sibling without Aspergers as the “neurotypical”...
The discovery that a child has Aspergers (or high-functioning autism) has a profound effect on a family. Kids suddenly must adjust to a brother or sister who, because of their disorder, may require a large portion of family time, attention, money, and psychological support. Yet it is an important concern to any family that the neurotypical sibling adjusts to the Aspie, because the neurotypical child's reactions to the Aspie can affect the overall adjustment and development of self-esteem in both kids.
In any family, each sibling, and each relationship that siblings have, is unique, important, and special. Brothers and sisters influence each other and play important roles in each other's lives. Indeed, sibling relationships make up a youngster's first social network and are the basis for his or her interactions with people outside the family. Brothers and sisters are playmates first; as they mature, they take on new roles with each other. They may, over the years, be many things to each other -- teacher, friend, companion, follower, protector, enemy, competitor, confidant, role model. When this relationship is affected by Aspergers, the long-term benefits of the relationship may be altered (e.g., the Aspie may have limited opportunities to interact with other kids outside the family; thus, social interaction between siblings often takes on increasing importance).
Each youngster's personality and temperament play an important role in their response toward a sibling, including one with Aspergers. Although both positive and negative feelings exist in all sibling relationships, for school-age kids and young adolescents, these relationships tend to be more positive than negative in their feeling tone. Furthermore, kids with an Aspergers sibling appear to have more positive and fewer negative behavioral interactions than do those with a non-Aspergers sibling. These positive aspects include higher levels of empathy and altruism, increased tolerance for differences, increased sense of maturity and responsibility, and pride in the sibling's accomplishments.
Living with a brother or sister, including one with Aspergers, can be rewarding, confusing, instructive, and stressful. Siblings of an Aspie express a range of emotions and responses to that sibling, similar in most ways to the range of emotions experienced toward siblings who have no disability. Kids react toward an Aspie with feelings of love, empathy, pride, guilt, anger, and support; the predominance and prevalence of these reactions have great impact on the levels of stress and coping ability of the Aspie. The positive or negative nature of the relationships between siblings and among family members may be influenced by factors such as these:
- age differences between kids in the family
- family's child-rearing practices
- family's lifestyle
- family's resources
- kind and quality of the support services available in the community
- kinds of coping mechanisms and interaction patterns that exist within the family
- number of kids in the family
- other stress-producing conditions that exist in the family
- severity of the disorder
Each youngster's reaction to having a sibling with Aspergers will vary depending on his or her age and developmental level. The responses and feelings of the neurotypical sibling toward the Aspie are not likely to be static, but rather tend to change over time as the sibling adapts to having a brother or sister with Aspergers and copes with day-to-day realities. Preschool-aged siblings, for example, may feel confused, afraid, anxious, and angry about a brother or sister with Aspergers. All kids are different; the intensity of a youngster's concerns, needs, and experiences will vary from sibling to sibling, as will a youngster's reaction to -- and interpretation of -- events. The younger the child the more difficult it may be for him or her to understand the situation and to interpret events realistically. Neurotypical siblings may resent the time their parents give to the Aspergers sibling and perceive it as rejection. They may wonder what is wrong with them that their parents love their Aspergers sister or brother more.
During the early years, the neurotypical sibling may mimic the physical or behavioral actions of the youngster with Aspergers, or the neurotypical sibling may regress in behavioral development. Later on, he or she may be prone to extremes of behavior such as "acting out" or becoming the "perfect" child.
Elementary school-aged kids may feel embarrassed or ashamed as they recognize differences between their Aspergers sibling and someone else's “normal” brother or sister. They may worry about "catching" or developing the disorder, and they may feel guilt because they themselves do not have the disorder. They may also feel protective and supportive of their Aspergers sibling, and this may trigger conflicts with peers.
Young adults may have future-oriented concerns. They may wonder what will become of their brother or sister with Aspergers. They may also be concerned about how the people they socialize with, date, and later marry will accept the brother or sister with Aspergers. Additional issues faced by young adults may include genetic counseling when planning their own families, and coping with anxiety about future responsibilities for the brother or sister with Aspergers.
Family Stress Factors—
The discovery that a youngster has Aspergers can produce stress among family members. Stress can also be caused by a number of ongoing factors, or by special circumstances. Siblings need an explanation for the tensions within the family and the cause of the tensions.
Some families are stressed by the amount of financial resources required to meet the needs of the youngster who has Aspergers. Some moms and dads may expect neurotypical siblings to accept the brother or sister with Aspergers as "normal." This expectation can lead to internalized feelings of anxiety and jealousy which the neurotypical sibling may be reluctant to voice. The parents, in turn, may fail to recognize the youngster's unhappiness and may deny that a problem exists.
Neurotypical siblings may feel obligated to compensate for the youngster with Aspergers, to make up for that youngster's limitations. They may be acting as a surrogate parent, assuming more responsibility than would be usual in the care of a neurotypical sibling. On the other hand, siblings may help the family by providing their parents with assistance and support, which they otherwise might not have, in the care of the youngster with Aspergers. The neurotypical youngster may experience jealousy because he or she may be required to do family chores, whereas, the sibling with Aspergers is not required to do them -- despite the fact that the Aspie may be unable to do them, or would have great difficulty doing them. The neurotypical sibling may resent having to integrate the Aspie into the neighborhood peer group, and may experience or perceive peer rejection because of having a sibling with Aspergers. Finally, the neurotypical sibling may feel embarrassment because of the Aspie’s characteristics or inappropriate behavior. Essentially, moms and dads, other adult family members, and professionals should realize that neurotypical siblings need special understanding, attention, support and recognition of their unique contributions to the family system.
Siblings with Aspergers, on the other hand, also experience stress as family members. These common stresses include:
- anger resulting from an inability to do things as easily and quickly as their nondisabled brothers and sisters
- frustration at not being able to make themselves understood
- irritation over constant reminders about everything
- low self-esteem
- unhappiness at being left to play alone
- withdrawal because of lack of social skills
Through it all, with understanding and support, there are usually many positive interactions and normal sibling give-and-take situations from which each learns and matures.
When moms and dads have a double standard for Aspergers and neurotypical kids, conflicts can arise. Even though the youngster with Aspergers, in fact, may need and receive more parental attention, the amount given may be perceived as unfair by neurotypical siblings. Some moms and dads, on the other hand, may tend to overindulge the “normal” sibling in an effort to compensate for a brother or sister with Aspergers. The normal rivalry between all siblings may cause the neurotypical sibling to perceive incorrectly that the parents favor or love best the sibling with Aspergers. Sara expressed the resentment she feels when her brother is dealt with lightly in comparison to her punishments:
"Normal kids can get pushed aside when their brothers or sisters has Aspergers. Jacob seems to get help naturally --it's like attention to his needs is "built into the system." I'm the bad one, but he can do no wrong. He makes all the messes, but I get into trouble if I don't empty the dishwasher."
Unlike their parents, siblings may have no knowledge of life without a brother or sister with Aspergers. Siblings generally are poorly informed about this disorder. Yet siblings' needs for information may be as great - or greater - than those of parents, because of their identification with their brother or sister with Aspergers. It is important to bear in mind that they have limited life experiences to assist them in putting the disorder into perspective. Moms and dads should respect the neurotypical siblings' need to be recognized as an individual who has concerns and questions as well as his or her right to know about the disorder. Neurotypical siblings may require information throughout their lives in a manner and form appropriate to their maturity.
For many siblings, anxiety-producing feelings often are not expressed in day-to-day family interactions and discussions, and are shared even less at school. These internalized feelings complicate sibling relationships, for kids need to vent their emotions. Kids should be given an explanation for their sibling's problems so that they will not make incorrect assumptions.
Moms and dads and professionals need to be aware that there may be a gap between the neurotypical sibling's knowledge and actions. A neurotypical sibling may be able to rationally explain a brother's or sister's disorder to inquiring friends or neighbors, but may still exhibit temper tantrums over the same sibling's actions in the home.
Most importantly, the need for information and understanding does not have to be addressed solely by the moms and dads. A youngster's disorder is a concern which should be shared by parents, helping professionals, and society. For example, some progressive clinics and hospitals have designed programs that include siblings from the beginning. These programs offer Family Support Groups which bring entire families together as a means of sharing information and mutual support.
It is important for teachers to be sensitive to neurotypical siblings' feelings and needs. Teachers can do much to promote positive sibling interactions as well as acceptance of Aspergers in all kids. During the school years, especially the early years, teachers can help to promote sibling awareness and interaction by providing opportunities for siblings to learn about Aspergers (e.g., conducting a "sibling day" or a “sibling workshop” can be an excellent way of introducing siblings to Aspergers). On this day, activities can include sharing positive experiences about having a sibling with Aspergers. Siblings without the disorder might be interested in seeing and/or participating in some of the unique activities in which their Aspergers brother or sister participates in.
Information puts fears into perspective. In most instances, simply knowing the facts about Aspergers takes away the sting of embarrassment, as well as uncertainty and fear. While embarrassment can and does occur in many situations over the years, knowledge can help one cope.
Ask parent groups, social workers, therapists, doctors, teachers, or counselors about the availability of support groups and other sibling resources in your area.
Planning For the Future—
Planning for the future raises many important issues for the family of a youngster with Aspergers. The most challenging of these dilemmas is the care of the adult sibling who has the disorder. Even though neurotypical adult siblings have lives (and often families) of their own, they face unusual, additional responsibilities because of their unique relationship with their brother or sister with Aspergers.
The amount of responsibility that adult neurotypical siblings assume for their adult sibling with Aspergers varies with individuals and with circumstances. It is dictated by a consideration of family and job responsibilities, personal choice, and available community support.
Perhaps the most challenging issue a family faces is, on the one hand, encouraging and fostering the independence and self-determination of the person with Aspergers and, on the other hand, facing the reality that, at some level, assistance may be necessary.
When planning for the future of the sibling with Aspergers, you should consider such things as mobility, social and communication skills, education, and the individual's own ideas about where to live and work. Even after careful planning and the appointment of a guardian or co-guardians, plans should be made for emergencies. A file should be kept in a safe place, known to all family members. The following ideas should be addressed when making future plans and the information should be included in this accessible file:
1. Neurotypical siblings should know where to access the needed educational, vocational, and medical records of the Aspergers sibling, and be ready to anticipate his or her changing future needs.
2. Know your state's laws regarding guardianship and independence. Do not assume that you as parents will automatically remain your youngster's guardian when he or she reaches the age of majority in your state. Establish whether the sibling with Aspergers requires no, partial, or full guardianship. This information should be in writing, and, if possible, make contingency plans in case the first-choice guardian is unable to assume that role. Be aware of the consequences in your state of not having a guardian appointed.
3. Families should gain an understanding of the legal and eligibility requirements of programs available to the family member with Aspergers. Investigate resources through government programs, such as Supplemental Security Income (SSI), Vocational Rehabilitation, Independent Living Centers, employment services, parent and disability groups.
4. Families should discover the types of community resources available. The range of services and resources varies considerably according to place of residence. Keep abreast of any changes in the availability of these services. Consider the sibling's need for long-term care, as well as for employment and companionship.
5. Families should consider the future health of the sibling with Aspergers with respect to needed services and care. Moms and dads should document where he or she can receive medical care and the financial resources and arrangements necessary for this care.
6. Develop financial plans for future care. If the family is considering establishing a trust for the family member with Aspergers, it should consider the incomes of the kids in the family, including the sibling with Aspergers. Make a will only with an attorney experienced in devising wills for those who have an heir with this disorder. Inheritances must be treated with caution. It is especially important to investigate the continued eligibility for certain social services if assets from an estate, pension, or life insurance are left to the youngster with Aspergers.
7. Be aware that, as families grow and develop, the members within it change. Living with and caring for a youngster with Aspergers is different from living with and caring for an adult with Aspergers. Family members should continually ask themselves the following questions:
- Are my career plans compatible with my responsibilities for my brother or sister with Aspergers?
- How will the responsibility be shared with other family members?
- How will these needs change?
- Is the involvement financially, emotionally and psychologically realistic for me?
- What are the needs of the sibling with Aspergers?
- What can be expected from local support groups in the community?
- What is and will be my level of involvement?
- Will my future spouse accept my brother or sister?
The care of a sibling with Aspergers is, in large part, a family affair and a responsibility that should be shared as evenly as possible. By planning effectively for the future, parents can help ease the responsibility and the feelings of stress that uncertainty about the future can bring.
Suggestions to Moms and Dads—
Moms and dads set the tone for sibling interactions and attitudes by example and by direct communications. In any family, kids should be treated fairly and valued as individuals, praised as well as disciplined, and each youngster should have special times with parents. Thus, moms and dads should periodically assess the home situation. Although important goals for a youngster with special needs are to develop feelings of self-worth and self-trust, to become as independent as possible, to develop trust in others, and to develop to the fullest of his or her abilities, these goals are also important to neurotypical siblings.
To every extent possible, moms and dads should require their kids with Aspergers to do as much as possible for themselves. Families should provide every opportunity for a normal family life by doing things together, such as cleaning the house or yard; or going on family outings to the movies, the playground, museums, or restaurants. Always, the youngster with the disorder should be allowed to participate as much as possible in family chores, and should have specific chores assigned as do the other kids.
Care-giving responsibilities for the youngster with Aspergers should be shared by all family members. It is especially important that the burden for care-giving does not fall onto the shoulders of an older sibling. If there is an older sister, there is a tendency in some families to give her the primary responsibility, or an excessive amount of it. Today, however, more communities are providing resources to ease the family's care-giving burdens. Examples include recreation activities, respite care, and parent support groups.
Here are several strategies suggested by neurotypical siblings themselves for mothers/fathers to consider in their interactions with their “normal” kids. These siblings suggest that moms and dads should:
- Welcome other kids and friends into the home
- Use respite care and other supportive services
- Use professionals when indicated to help siblings
- Teach siblings to interact
- Schedule special time with the neurotypical sibling
- Require the Aspergers youngster to do as much for himself or herself as possible
- Recognize that they are the most important, most powerful teachers of their kids
- Recognize special stress times for siblings and plan to minimize negative effects
- Recognize each youngster's unique qualities and family contribution
- Provide opportunities for a normal family life and normal family activities
- Praise all siblings
- Listen to siblings
- Limit the care-giving responsibilities of siblings
- Let siblings settle their own differences
- Join sibling-related organizations
- Involve all siblings in family events and decisions
- Be open and honest
- Accept the disorder
Kids with special needs may often need more help and require more attention and planning from their parents and others in order to achieve their maximum independence. Brothers and sisters can give parents some of the extra help and support they need; the special relationship of brothers and sisters is often lifelong. This special and unique bond among siblings can foster and encourage the positive growth of the entire family.
The Aspergers Comprehensive Handbook