How and when do you tell a child about their ASD diagnosis?

Answer: There are a number of frequently asked questions around when you should tell a child about their ASD diagnosis. How do you tell a child about their diagnosis of ASD? Is there a right age? How do you know when the child is ready to hear the information?

It is recommended not to start this process before the age of 7. Children under that age generally don’t have enough understanding to grasp what autism is all about. When parents feel anxious about wanting to talk to their young child about autism, I usually suggest they begin with celebrating differences and building positive self-esteem. A couple of good children’s books to start with are It’s Okay to Be Different or Special People, Special Ways. Let them know that each of us is unique, deserving of respect, and we should appreciate different ways of seeing the world.

Learning about a diagnosis is a big deal for a young person. In Peter Vermeulen’s book, I am Special, he recommends the introduction to ASD not be done by parents but rather by a professional like a school counselor, psychologist or other trained professional. This may not be possible in all situations. There are three great support materials available to work with children – Asperger’s…What Does It Mean to Me, The ASD Workbook, or Asperger Syndrome: An Owner’s Manual. These three books provide a framework in which to build self-esteem and self-understanding.

A child may be ready for the ASD introduction when they start asking questions like why are they different from other children. They may also start identifying with the diagnosis or asking questions after reading about it or hearing something through the media. The child may need an explanation as to why certain situations are difficult for them like peer relationships. They may need to develop self-awareness for future challenges like entering middle school.

Be prepared that the first discussion of ASD with a child may have a big impact on them. The child may ask lots of questions, feel relieved, or find it difficult to hear the diagnosis initially. The child may need time to reflect and process this information. Be supportive but also allow breathing space. Some children may be eager to learn more right away. If this is the case, use one of the suggested support materials to help support understanding and personal growth.

Parents and professionals, make a checklist before starting the introduction to ASD. Decide on the following:

  • when the discussion will take place.
  • where the discussion will take place.
  • how long the discussion will be.
  • who will lead the discussion.
  • who will be involved (family members, counselor, teacher)
  • decide which terms to use (ASD, autism, Asperger Syndrome)
  • think about strengths to highlight (the child should identify with these)
  • what difficulties to highlight
  • what support materials to use (Can I Tell You About Asperger Syndrome for ages 6 – 12, Freaks, Geeks and Asperger Syndrome for adolescents for example)

And this leads to another question – who else should know about the diagnosis? This was a past featured Q & A question. Think about the people in a child’s life who spend time with them and support them. Teachers, community instructors, caregivers, extended family members, friends and classmates may all be good choices depending upon the situation.

In my own personal experience with my daughter Julia, she was in an inclusive classroom until 6th grade. I did an ASD presentation for her classmates in 4th grade without Julia present. I planned on a 20 minute presentation which turned into an hour because the students were so enthusiastic to share their observations and how they’ve supported Julia. I was both impressed and moved. Julia still speaks about her elementary classmates and can’t wait to join them again in high school.

Learning about a diagnosis is a life-changing experience, but it can be a positive one when surrounded by supportive people and access to information to guide understanding and personal growth.

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