How do I explain autism to a sibling?

By Maureen Bennie, Autism Awareness Centre Inc., autismawarenesscenter.com

Siblings of children with autism play a unique role in the family. Important as that is, they are often the ones who get less attention, alone time with parents, and adjustments to make in their lives due to the demands of the child with autism. The key to family harmony is fostering an understanding of autism and the importance of the role a sibling plays in a child who has autism.

How to explain autism to a sibling is a question I am asked frequently. The answer to this depends on the child’s age and explanations will need to change as the child ages. Jean Piaget, a Swiss developmental psychologist, identified 3 stages in the development of concepts:

1. The Preoperational Stage – until age 7. Children do not use logic to formulate their thoughts but draw on their own experience to form an idea. Telling them theoretical information may not affect the concept they have formed in their mind.

2. Concrete Operational Stage – ages 7 – 11. Concepts still grow from direct experience, but varied experiences may be linked together because logical thinking is emerging. They can see they are variations on a basic concept.

3. Formal Operational Stage – 12 years and up. The child thinks more like an adult and they have the ability to use abstract reasoning. They can think about hypothetical events and information that they have not directly experienced or perceived.

Keep these stages in mind when discussing autism. Too often, we want to introduce information about autism to young children before they can process the information in a meaningful way. Here are some tips for telling your child about autism:

Early Childhood

 

  • You can’t catch autism.
  • It’s nobody’s fault.
  • He hasn’t learned how to talk yet.
  • I will keep you safe.

 

I think a good place to start an introduction to autism is through books about differences like Todd Parr’s It’s Okay to Be Different or Special People, Special Ways.

Middle Childhood

 

  • Autism occurs before birth or when they are a baby.
  • It is a problem in the brain.
  • It causes problems with talking, playing, and understanding other people’s feelings.
  • People with autism can learn but it takes a lot of work.
  • If your brother/sister is aggressive, it is my job to help, not yours.
  • You can help by playing and showing how to do things.
  • If your friends have questions, I can help you figure out what to say.

 

Good books for middle childhood are All About My Brother, Can I Tell You About Asperger Syndrome,This is Asperger Syndrome, Can I Tell You About Autism, My Best Friend Will, and Everybody’s Different.

The autism discussion should be an on-going one and not a one-time big discussion. Because of the 3 stages mentioned earlier, the sibling’s view of autism will be changing and new questions will emerge. I like these tips for autism discussions from the Siblings of Children with Autism:

 

  • Hear your child out before correcting errors.
  • Stay neutral and try not to judge your child’s answers.
  • Praise your child for sharing feelings and acknowledge that you understand where misconceptions about autism may have come from.
  • You want your child to feel comfortable speaking with you again.
  • Be prepared for intense emotions ranging from sympathy to guilt or anger. Try to remain neutral as a parent. Your child is allowed to have these feelings. Open communication will encourage more positive emotions.
Here is an idea on how to get the autism conversation started. “I realize we have not talked about John’s disability. Since he’s important to both of us, I thought we should learn about each others thoughts and feelings. Do you know what his disability is called?”

 

A thought about the adolescent years – the challenge will not be explaining autism because teens will do much of their own reading and research through the internet. What influences their understanding of autism is their own feelings around it. The challenge for parents will be helping the teenager understand what autism means for himself, his sibling, and dealing with the feelings that knowledge brings. One book I like for teens that is a positive read is Asperger’s Syndrome and Self-Esteem which is about historical figures who have been on the autism spectrum.

A final thought on this topic – if family difficulties continue to be a problem, consider family counseling. The sibling may require one on one counseling as well to help them through their struggles. Also look for sibling workshops.