Siblings and 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 (taken from Siblings of Children with 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 Can I Tell You About Asperger Syndrome and Everybody is 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 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 other’s 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 and Self-Esteem which is about historical figures who have been on the autism spectrum. There is also a great DVD that has 4 programs to cover different ages, including teens – Understanding Brothers and Sisters on the Autism Spectrum.

A final thought on this topic – if family difficulties continue to be a problem, consider family counselling. The sibling may require one on one counselling as well to help them through their struggles. Also look for sibling workshops (check out the Sibshops website) or support groups which are often offered through local autism societies.