How to Tell a Child They Have Autism Spectrum Disorder

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? 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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  1. Madelaine O'Reilly says:

    Seen you at the conference in Sydney this week.   My daughter is 5 and was diagnosed a year ago with Autism.  She’s verbal and is doing great after her year of EIBI and is high functioning.    When do you discuss with your child they have autism and how much do you tell???

      A few months ago, my daughter heard me tell someone she had Autism.  We were laying in bed that night and she asked…”Mom, what’s Autism?”  She doesn’t usually ask What Questions.  I felt she was too young but had to answer her …my reply was “Autism means Awesome Kid”   She was ok with that reply.  We do mention Autism frequently and she hears it at our Autism play groups.    Not sure how much she understands, but one day she was happy after our “gym and Swim” (swimming for special needs children) and said “Mom, Taylor has Autism like me and we are awesome Angels”.    Any books you suggest that will help her understand autism.    She does have sensory issues with meltdowns.   Doesn’t like change and needs routine.  We have difficulty with bed time. Just started melatonin and loving it.    She used to echo everything, but has slowed down.  I think she is realizing she’s different cause she came home from school and said ” I don’t like school, I can’t write my name” 

    Madelaine. 

    Now planning on going to the conference in Halifax! 

    • Madeline, 5 years old is too young to tell a child they have autism. They don’t have the comprehension level yet for the explanation of the diagnosis. You are doing a great job with the positive talk. You can read stories like Todd Parr’s “It’s Okay to Be Different” or “Special People, Special Ways. I also like “I Am Utterly Unique” which is along the lines of what you are already doing with your daughter. That book takes each letter of the alphabet and says something positive about someone with autism without using the word autism. Introduce your daughter to the computer keyboard and let her start typing. She’ll type her name easier than she will write it. Handwriting is so difficult for people with autism and often impedes their thought processes as all the mental energy goes into forming the letters. Glad you’re coming to Halifax! You’ll get loads out of the conference and meet some wonderful people. I have a really good group that comes every year.

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