The Autism Society Event and Education Recordings Archive

Practical and emotional imbalances may occur in families with one or more children with autism. Mother and daughter share their experiences and perspectives about the challenges families face, as well as the interventions and strategies that strengthened their family. As the younger sister of a brother on the spectrum, 22-year-old Lisa shares key sibling issues and ways parents and professionals can support them. What kinds of issues disrupt our family balance when a family member has ASD?

Sibling Perspectives

Emotions

Jealousy, knowing they are not first priority to the parents

Resentment of continuously having to accommodate the needs of the person with ASD

Sadness, sometimes due to lack of attention

Disappointment in the quality or lack of relationship with the sibling with ASD

Sense of loss: don’t have the “big brother” or “little sister” they hoped for

Disappointment to always have to give and not get

Anger, sometimes about unfair/unequal/unjust discipline

Embarrassed or humiliated by sibling’s behavior

Fear that others will think he or she also is “like that”

Teased or bullied by others because of the sibling

Sometimes asked to be responsible and help beyond their level of maturity

Self-imposed responsibility, now and later

Worried about the future

Role of the protector and defender, have to step in for the sibling

Regret for not always being able to defend the sibling

Shame for not always wanting to defend the sibling

Guilt: they are OK and their sibling struggles

Pain: are physically hurt by the sibling, feel abused (parent priority to address this)

Distress at not feeling safe or protected

Vulnerability, have their possessions destroyed

Anxiety, not knowing when something will go wrong

Annoyed by continual “in their face” behaviors

Upset by “autism centered world,” and therapy “waiting room syndrome”

Upset by lack of privacy or personal space, having therapists in the home

Family Issues

The Parent Perspective: Plate Spinners

·        Coping with huge demands and responsibilities

·        Sometimes we can cope, sometimes we need more help

The Good Child

·        Doesn’t speak up, avoids burdening parents, tries to accept and help

·        Tries to reestablish the family balance, may repress their own needs

·        Pressure themselves to be good, not disappoint the parents; may try to be perfect

The “Bad” Child

·        Acts out for parental attention or inability to cope with situation;

·        May be asking for attention and support

·        Usually get punished for problem behaviors

The Information GAP

·        Child doesn’t understand ASD and the real life features

·        May not really understand what is going on

·        Has worries and misconceptions

·        Think the child with ASD can switch autism on an off at will

·        May feel unloved

How to help restore balance, promote harmony and protect each person:

Understand, accept and value

·        Find out what is worrying the child, even if he or she doesn’t ask or tell

·        Do not expect or require children to be responsible

·        Share more information over time

·        Provide information: make sense of the features and behaviors the child can see

·        Free children from the burden of responsibility now and later

·        Let them choose how to help if they wish to

·        Protect them, care for their needs as if they were an only child

·        Comfort them- acknowledge and validate their feelings

·        Find a safe person they can talk to (sometimes it should not be the parent)

·        Professional counseling may be needed

·        Sib shops, sibling support, to know they are not alone, feel understood by peers

·        Build in some choices for the siblings, so family life and decisions are not always centered on what the child with ASD wants or needs

·        Shared home activities: cooking, projects (cooperative, non-competitive).

Behavioral perspective (Ask for the help of an in-home behavioral specialist)

·        “Hold up the mirror” so each person can see what they are doing and why

·        Develop coping strategies for dealing with problems that come up regularly

·        Have family rules and limits

·        Understand that the person with ASD does not have to change to be accepted

·        Give it time, this is a process

What parents can do: Lisa Iland’s perspectives

1. Explain the features of autism so siblings can make sense of them.

Kids need to know not just that their brother or sister has autism, but also what that means. It helped me to have the features of autism explained in a way that I could see and experience with my brother in daily activity. Share information gradually and continuously.

2. Don’t wait for questions: Siblings may not always say what is on their mind.  Siblings may draw the wrong conclusions about complex things, and need clarification. Anticipate some common worries and address them early. Siblings may think that they are responsible for their brother/sister with autism (as therapist or third parent), or that they will have to take care of their brother/sister for the rest of their lives. They might worry that they or their friends could get autism, like an illness. They could worry that they will have a baby with autism. As a child I thought that no one was going to want to marry me and my brother. 

3. Find someone else the sibling someone can talk to besides you.  Sometimes siblings have worries that might be about his/her relationship with you as a parent, and it may be difficult to mention to you directly. An extended family member or neighbor would be a good person for siblings to talk to. Talking to a therapist really helped me breakthrough into accepting my brother. I was reluctant at first, but I needed an outside perspective to help solve problems

4. Verbalize kindnesses aloud in front of the sibling and the brother/sister with autism.  When my parents verbally expressed appreciation it helped me feel recognized for trying hard to be a good sister.  When my mom would tell me how she appreciated when I was patient or didn’t get upset when my brother did something I didn’t like, it made me feel like my efforts did not go unnoticed.  It also made me feel like my brother would hear the things that I did to be a good sister if he didn’t realize it before. Acknowledge that the sibling has made a sacrifice.  To kids, giving up a turn or having their brother play with their toys is a big thing.

5. Don’t let siblings get discouraged. Let the sibling know that negative things that happened in the past between him/her and the child with ASD are over and it is okay to move on in a positive direction. When you notice a sibling making a positive change or special effort with their brother/sister with Autism, support both children. Prompt the brother/sister with Autism, and support him in responding in an appropriate way.  If the child with Autism is nonverbal, “speak” with him or for him, modeling in an appropriate way (i.e. “Brian, wasn’t it nice of Kate to share her cookies?  Thank you Kate!”). 

6. Help the child with ASD be helpful to the siblings. One thing that helped me and my typical brother Danny develop a relationship with Tom was when my mom gave small and thoughtful responsibilities to Tom like making our sandwiches for school lunch. Not too much skill involved but it made us feel like he cared about us. It was a kind gesture that made us feel connected.

7. Praise siblings for good attitude and behavior.  Sometimes small kindnesses go unnoticed because parents are overwhelmed by the brother/sister with autism.  Take a few minutes later to make siblings feel like their good behavior was worthwhile and will get them positive attention.  I would sometimes misbehave when my mom was giving my brother extra help so that I would get attention. When I was praised for my good behaviors and had special alone time with mom, I didn’t need to misbehave.  It also helped me to have coping strategies to deal with annoying behaviors (i.e. leave the room).

8. Give the Sibling their own activity to do and be proud of. Sometimes the brother/sister’s therapy schedule has siblings waiting in office waiting rooms all week, and the autism centered routine becomes draining on the siblings.  Sometimes families become autism centered, and siblings need something for themselves to be a part of outside of the autism bubble. A sport, club, instrument, group, or activity gives a sibling something to look forward to and take pride in. It helps with confidence and identity. Although parents are overwhelmed enough with being a taxi driver, it is important that siblings have something for themselves.  I looked forward to my singing lessons and theater productions because it was a time when I could shine for my individual talents.

9. Private time together Perhaps the sibling in your family needs one day a month where you two spend the day alone together, a bit of your time each day, or just some daily special attention.  Siblings are well aware of their problems and parents may not understand the reasons for a sibling’s behavior, but that doesn’t mean a reason doesn’t exist.  In the same way that kids with autism who don’t speak still have thoughts, siblings have reasons for the things they do, even if they haven’t been expressed, or you haven’t identified them. Whatever experiences you are facing in your family they can get better with time and patience, when the sibling is ready.

10. Protect the sibling. Be sure he or she is safe, secure, and not harmed by the child with ASD. The child should never be subjected to physical harm. Replace toys that have been broken or lost by siblings with autism. Having a locked treasure chest, drawer, or box where special things can be safe for siblings creates less worry that their favorite toy or book will be ruined when they are not looking.

11. Acceptance is not instantaneous. I think that is the most important thing for a parent to remember about siblings.  It took me 8 years to get to the point that I am at today, not a fast process!  I don’t think that I could have imagined years ago that today I would hug my brother and we would tell each other “I love you.” Every family situation is complex and unique. Perhaps you have younger children and can start sibling support earlier. Maybe you are a parent who has tried things like I have mentioned without any breakthrough, keep up hope. Every sibling has individual needs and preferences. I despised family art therapy. That discouraging therapy experience could have stopped progress, however; only when I had a different therapy did I have a breakthrough.

12. Developing social skills/empathy/siblings as advocates. When my brother learned social skills techniques and could contribute to our relationship, that helped our friendship the most. I developed full acceptance when my brother and I attended high school together and I witnessed myself how difficult daily social struggles were for him at lunchtime. That moved me to action, and I began facilitating conversation in our common social circles.

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