SOME GUIDELINES FOR PARENTS
by Marci Wheeler M.S.W.
There is little doubt that those of us raised with siblings have
been influenced by that relationship. Living with a brother or sister
with an Autism Spectrum Disorder adds more significant and unique
experiences to that relationship. Throughout numerous accounts of
parents and siblings of children with disabilities it becomes very
clear; when a child in the family has a disability, it affects the
Also clear is that families and each member can
be both strengthened and stressed from this situation. It is the
degree of these conflicting effects that seem to vary from family
to family and person to person. There are some factors that have
been found to help strengthen families and minimize the stressors.
This brief article is meant to arm you with important information
and practical suggestions for helping and supporting siblings.
Though limited research has been done, a child’s
response to growing up with a brother or sister with a disability
is influenced by many factors such as age, temperament, personality,
birth order, gender, parental attitudes and modeling, and informal
and formal supports and resources available. Certainly parents have
little control over many of these factors. However, parents do have
charge of their attitudes and the examples they set. Research by
Debra Lobato found that siblings describing their own experiences
consistently mentioned their parents’ reactions, acceptance and
adjustment as the most significant influence on their experience
of having a brother or sister with a disability (Lobato, 1990).
It is also important to note from Lobato’s research
that a mother’s mental and physical health is probably the most
important factor in predicting sibling adjustment regardless of
the presence of disability in the family (Lobato, 1990). Positive
outcomes that siblings frequently mention are learning patience,
tolerance, and compassion and opportunities to handle difficult
situations. These opportunities also taught them confidence for
handling other difficult challenges. Research by Susan McHale and
colleagues found that siblings without disabilities viewed their
relationship with their brother or sister with autism as positive
when: 1) they had an understanding of the siblings disability; 2)
they had well developed coping abilities; and 3) they experienced
positive responses from parents and peers toward the sibling with
autism (McHale et al., 1986).
There are negative experiences of having a sibling with an Autism Spectrum Disorder that should be acknowledged and addressed. Anxiety,
anger, jealousy, embarrassment, loss, and loneliness are all emotions
that children will likely experience. Because of the nature of Autism Spectrum Disorders there are barriers to the sibling bond that can
cause additional stress as a result; communication and play can
be difficult between siblings when one has an Autism Spectrum Disorder.
Often the sibling without the disability is asked to assume or may
on their own feel obligated to assume the role of caretaker. It
is best to be proactive in addressing these issues. Siblings are
members of the family that need information, reassurance and coping
strategies just as parents do.
Each family is unique. There are various family structures such
as single parents, multi-generational households, and households
with other significant stressors including more than one member
with a disability. Each family has its own beliefs, values, and
needs. Regardless of family circumstances, the suggestions for parents
discussed here should be viewed as supportive strategies that can
be considered to assist siblings in coping with having a brother
or sister with an Autism Spectrum Disorder.
Twelve Important Needs of Siblings and Tips to
Address These Needs
Siblings need communication that is open, honest,
developmentally appropriate, and ongoing. Parents may need to deal
with their own thoughts and feelings before they can effectively
share information with siblings. Children may show their stress
through their withdrawal or through inappropriate behaviors. Parents
should be alert to the need to initiate communication with their
son/daughter. Siblings may be reluctant to ask questions due to
not knowing what to ask or out of fear of hurting the parent. While
doing research on siblings, Sandra Harris found that developmentally
appropriate information can buffer the negative effects of a potentially
stressful event (Harris, 1994).
Siblings need developmentally appropriate and
ongoing information about their siblings’ Autism Spectrum Disorder.
Anxiety is most frequently the result of lack of information. Without
information about a siblings’ disability, younger children may worry
about catching the disability and/or if they caused it. The young
child will only be able to understand specific traits that they
can see like the fact that the sibling does not talk or likes to
line up their toys. School aged children need to know if the autism
will get worse, and what will happen to their brother or sister.
Adolescents are anxious about the future responsibility and impact
of the disability on their future family.
Siblings need parental attention that is consistent,
individualized, and celebrates their uniqueness. Many families make
a major effort to praise and reward the child with the disability
for each step of progress. This same effort should be considered
for the siblings even if an accomplishment is somewhat “expected.”
Self esteem is tied to this positive recognition by parents. Remember
to celebrate everyone’s achievements as special.
Siblings need time with a parent that is specifically
for them. Schedule special time with the sibling on a regular basis.
Time with the sibling can be done in various ways such as a 10 minute
activity before bed each night or a longer period of ½ hour to an
hour 3-4 times a week. The important thing is to have some specific
times with a parent that siblings can count on having just for them.
Siblings need to learn skills of interaction with
their brother or sister with an Autism Spectrum Disorder. Sandra
Harris & Beth Glasberg (2003) offer guidelines for teaching
siblings necessary play skills to interact successfully with their
brother or sister with an Autism Spectrum Disorder. It is important
to go slow and generously praise the sibling for his or her efforts.
Toys and activities should be chosen that are age appropriate, hold
both children’s interest and require interaction. The sibling needs
to be taught to give instructions as well as prompts and praise
to their brother or sister (Harris & Glasberg, 2003).
Siblings need to be able to have some choice about
how involved they are with their brother or sister with an Autism Spectrum Disorder. Be reasonable in your expectations of siblings.
Most siblings are given responsibility for their brother or sister
with a disability at one time or another. Show siblings you respect
their need for private time and space away from the child with the
disability. Make every effort to use respite services, community
recreational programs, and other available supports so that you
are not overly dependent on the sibling.
Siblings need to feel that they and their belongings
are safe from their brother or sister with autism. Some children
with an Autism Spectrum Disorder can be destructive and hard to
redirect. They can also be quick to push, bite, or engage in other
challenging behaviors with the sibling as a target. Siblings must
be taught how to respond in these situations. Generally this would
include asking a parent for help in handling the situation. Parents
should make every effort to allow siblings a safe space for important
items and a safe retreat from their siblings’ aggressive behaviors.
Thomas Powell and Peggy Gallagher offer ideas on teaching basic
behavior skills to siblings (Powell & Gallagher, 1993).
Siblings need to feel that their brother or sister
is being treated as “normal” as possible. Explain differential treatment
and expectations that apply to the child with a disability. As they
mature, siblings can better understand and accept the modifications
and allowances made for the brother or sister with a disability.
For various reasons, parents sometimes do not expect their child
with an Autism Spectrum Disorder to have chores and other responsibilities
around the house. Attempts should be made to make each child’s responsibilities
and privileges consistent and dependent on ability. Be careful not
to underestimate the ability of the child with the Autism Spectrum Disorder.
Siblings need time to work through their feelings
with patience, understanding, and guidance from their parent(s)
and or a professional, if appropriate. Listen and acknowledge you
hear what is being said. Validate the sibling’s feelings both positive
and negative as normal and acceptable. Repeat back what you have
heard the sibling say and check for accuracy. Sharing your positive
and negative emotions appropriately is also important. Remember
parents are important models of behavior. Help siblings learn ways
to cope with and manage their emotions.
Siblings need opportunities to experience a “normal”
family life and activities. If needed, draw on resources in the
community both informal and formal. Some families are uncomfortable
in asking for help. For the sake of everyone in the family, it is
important to find and use resources available such as respite care
services and other community programs for persons with disabilities
and their families. Most families would be overwhelmed without some
breaks from the ongoing demands of caring for children with a disability.
Siblings and parents need opportunities for activities where the
focus of energy is not on the child with special needs.
Siblings need opportunities to feel that they
are not alone and that others understand and share some of the same
experiences. Parents should recognize the need for siblings to know
that there are others who are growing up in similar family situations
with a brother or sister with a disability. Opportunities to meet
other siblings and/or read about other siblings are very valuable
for most of these children. Some children might benefit from attending
a sibling support group or a sibling event where they can talk about
feelings and feel accepted by others who share a common understanding
while also having opportunities for fun.
Siblings need to learn strategies for dealing
with questions and comments from peers and others in the community.
Parents should help prepare siblings for possible reactions from
others toward their brother or sister with a disability. Make sure
the sibling has facts about Autism Spectrum Disorders. Discuss solutions
to possible situations. They may even benefit from carrying their
own information card for friends which they can hand out as needed.
Siblings have a unique bond with each other which
is usually life long. Having a sibling with a disability impacts
this bond and will impact each sibling differently. The information
presented here highlights some of the limited research and the most
significant factors influencing a positive experience for siblings
of a child with a disability. As a parent of a child with an Autism Spectrum Disorder you can directly influence and support positive
relationships for siblings. Just as you have learned to be proactive
for the sake of yourself and your child(ren) with an Autism Spectrum Disorder, siblings need you to be proactive in helping them, too.
Harris, S.L. (1994). Siblings of children with
autism: A guide for families. Bethesda, MD: Woodbine House.
Harris, S.L. & Glasberg, B.A. (2003). Siblings
of children with autism: A guide for families. (2nd ed.) Bethesda,
Lobato, D.J. (1990). Brothers. Sisters, and special
needs; Information and activities for helping young siblings of
children with chronic illnesses and developmental disabilities.
Baltimore, MD: Paul Brookes Publishing Co.
McHale, S.M., Sloan, J., & Simeonsson, R.J.
(1986). Sibling relationships of children with autistic, mentally
retarded, and nonhandicapped brothers and sisters. Journal of Autism
and Developmental Disorders, 23, 665-674.
Powell, T.H. & Gallagher, P.A. (1993). Bothers
& sisters: A special part of exceptional families. (2nd ed.)
Baltimore, MD: Paul Brookes Publishing Co.
Wheeler, M. J. (2006). Siblings perspectives:
Some guidelines for parents. Reporter 11(2), 13-15.
Reproduction kindly allowed by
Indiana Resource Center Autism. Visit their site for more useful
Click here for the full range of Asperger's
and autism fact sheets at www.autism-help.org
Read the personal story Other
angels - siblings of children with autism.