The Autism Spectrum : ‘Siblings’ or

‘The children who live with the children with autism’

 

  1. The home environment
  2. Typical responses of the siblings and specific challenges
  3. Challenges : parents
  4. Strategies

1. The home environment

What items, related to the disorder, affect the home environment in which the sibling lives?
  1. Typical responses of siblings and their specific challenges

"Unlike their parents, siblings may have no knowledge of life without a brother or sister with a disability." ( Featherstone, 1980)

Each sibling’s reaction to a sister or brother with autism will be slightly different depending upon his or her age and developmental level. I have seen a multitude of responses in my own son including apparent indifference, acceptance, resentment, embarrassment, anger and jealousy, all at different times in his life.

Children, especially very young ones, equate ‘attention’ to some extent with ‘love’ so that they can resent the amount of time spent with an autistic sibling or the presence of a support worker for that child, believing it to be a sign of favouritism. They feel neglected, whether it is real or imagined. In order to receive the same level of attention some children may be prone to extremes of behaviour either by ‘acting out’ or attempting to become the ‘perfect’ child.

Some siblings will compensate for the disability by trying to turn into a surrogate parent. Although some level of concern and advocacy on behalf of a brother or sister is healthy, assuming too much responsibility is not.

A more subtle response to a sibling with a disability is one of guilt which is rarely voiced—‘Why am I healthy? Why was it him and not me that got the autism?" or, " I don’t like my brother very much because he is always screaming or taking up Mom and Dad’s time—am I a bad person?"

Another area in which a sibling can be effected is related to family chores. When a brother or sister is incapable of helping around the house, often the bulk of the chores fall upon the child without the disability and this stirs up resentment. If there are only two children in the family this may mean that the non-disabled child is also forced to spend a great deal of time alone.

Teenage siblings may worry that their lives are already mapped out for them due to the pressure to support, or monitor the support of a brother or sister in the years to come. They may already experience unusual responsibilities unknown to their peers. The situation is a difficult one for parents: how do you nurture independence and give the sibling opportunities to be separated from a brother or sister, yet still help them develop the skills that may be necessary to learn in order to assist the child or the family? No parent wants childhood to be lost under the burden of such responsibilities, but the reality of the situation may be that the siblings have to play some part in the disabled individual’s future in order to keep him/her safe after the parents are gone.

Here are a selection of responses by siblings of children with autism within a workshop held several years ago in Hamilton, Ontario:

The siblings of the child with autism may feel isolated from peers who truly understand what they are going through. They need to know more about the disorder and how it affects all those who work and live with individuals who have autism.

Since they are experiencing much of what the adults do too, they may find their energy depleted, especially during the teen years when they themselves are searching for a separate identity. It is natural that their relationship with the brother or sister with the disability may be ambiguous—one of love and resentment at the same time.

If the child feels that the family depends upon his/her contribution in order to survive the needs of the sibling with autism, he/she may also be reluctant to make the natural separation necessary to become an adult.

Anger can also be directed at the sibling with autism for causing the family such a financial and emotional burden, toward the parents or even directly inwardly at themselves for feeling embarrassment and guilt. Anger often results from children who cannot voice their feelings or are not given avenues to do so.

3. Challenges faced by the parents

Coping with the loss of the child that ‘could have been’ is often a journey that takes years, and for some families, this fact is never completely resolved. The ability to connect with other people who have experienced the same challenges, and have survived, is often the most effective way to live through these early stages of mourning.

It should be understood that every time the child moves onto a new stage of life such as entry into school, the move to high school, birthdays, and so on, a dual reaction can occur in the minds of the family members around the child. On one hand, there is the natural impulse to celebrate this new stage, but on the other hand, there is often the inevitable comparison to ‘what could have been’—not only for the child, but for the family and siblings. It is not unusual to have a renewed sense of loss related to the stages of transition.

Although in the last few years much funding and focus has been spent on the need to help families connect to community resources, there still remains a huge gap in the knowledge of families. Often it is only through ‘word of mouth’ with others that they learn of resources.

Programs and resources that meet the needs of children and their families with autism are still not available in all areas, especially districts that are primarily rural. Once a family locates a program, there is also the very real possibility that the mandate of the program or agency is so narrow that it excludes the child, or only meets some of the child’s needs.

Many resources or programs are available for individuals based on their age. Once that magic age is reached, the program disappears. The new IBI ( behaviour management program) funding available for youngsters with autism in Ontario under the age of six, is an example. Many parents have asked me –Why is there no other disability which limits the development of the child by stopping treatment? Individuals who have physical disabilities are not ‘cut off’ from aid once they reach a certain age. It is understood that they will face a life of challenges.

Family members will continually ask themselves:

( from www.ldonline.org/ld_indepth/family/family-sib)

4. Strategies

a) Offer age-appropriate information about the disorder to the sibling without autism.

The information will need to be life-long, and often connected to milestones of transition

possible resources:

What to tell the siblings http://hunter.apana.org.au/~cas/autism/sibling.html

also www.seattlechildrens.org/sibsupp/links.htm

NASP newsletter for siblings of children with disabilities

Sibling Support Project

Children’s Hospital and Medical Centre

P.O. 5371 CL-09

Seattle,WA 98105-0371

Views from our shoes. Growing up with a brother or sister with special needs. 1997, Ed. By D. Meyer

b) Balance the time you spend with the children as well as the tasks that they are given. Make sure that the child with the disability is also given chores.

c) Encourage open discussion and help the siblings develop good communication

skills. Encourage your children to be open and honest about how they feel.

  1. Have a 15 minute, regular family meeting which is created so that all individuals can ‘air’ their concerns in a positive and non judgmental atmosphere. The mini meetings need to be held in a relaxed setting which will not be interrupted by telephones, door bells or other distractions. Each member needs to take a turn in sharing without commenting negatively about what someone has said. It may be very helpful to have grandparents as part of these meetings, not only as another avenue of support, but in some cases they may be just as confused as the siblings in terms of their knowledge of the disorder and its implications.

Possible Resource: Siblings of children with autism: guide for Families by Sandra Harris. Ph.D. ( Woodbine House, 1994)

  1. Parents need to model the most positive manners by which to interact with the sibling with autism.
  2. Encourage but don’t pressure the siblings of the children with autism to attend team meetings and/or case conferences. They will learn valuable information about their sibling and the disorder in this manner, but also start to become familiar with the dynamics of advocacy.
  3. Help the sibling access other siblings who are or have experienced the same stresses.

Effective Sib workshops can include:

d) Families need to seek out service providers who also understand the importance of the gap in service for siblings, or, help educate professionals where no understanding exists:

e) Parents need to plan for the future .

This lessens the pressure on the siblings and may also put into place services or people who will aid the sibling make decisions. It is important to have the siblings with the disability and their siblings at these sessions whenever possible. Some of the sessions could be held with several families present working together, while others may best be addressed on an individual basis.

Some areas that may need to be addressed could include:

possible resources: Families planning together. Michael Smull, M. Bourne, A. George, S. Dumas

Community Circles. A guide for supporting youth.

Http://golem.coe.wayne.edu/CommunityBuilding/ArtCCircles.html

Another interesting hand out for parents is entitled "What can I do as a parent?". It can be found at www.spannj.org/BasicRights/transition_to_adulthood.htm

f) Parents can teach their children how to advocate without being negative.

When you speak to a service provider on the telephone, at a meeting etc. and the sibling is with you, later discuss why you made that specific decision or why you used the body language, voice tone etc. when you did so.

Possible resource: SNIP Sibling Need and Involvement Profile. T. Fish, F. McCaffrey, K. Bush, S. Piskur. Contact Pacific Northwest Children’s Services. Waverly Children’s Home, 3550 SE Woodland Ave., Portland Oregon, OR97202

a mini unit on parent and child advocacy is included within the "supported employment" research project of the Family Support and Resource Network website- netrover.com/~ckasfsrn

g) Recreational activities and early play opportunities when the children are young, can offer ways to encourage interaction and promote connections among family members.

h) Be aware of the positive aspects that having a sibling with autism in the family will probably have on the life of the other siblings—and reinforce these possibilities.

The following web site has a comprehensive list—www.autism.org/sibling/oppotun.html

 

 

 

other sibling resources can be found at:

www.seattlechildrens.org/sibsupp/resourcespage.htm