Back in the 1980s and 1990s, a highly controversial topic of conversation amongst parents and professionals was the question, “Should we tell our child that she has autism?”
Today most will agree that such self-knowledge is essential, that children need to understand how and why they may feel different from others around them…and what it means. In the absence of accurate information, all sorts of wrong conclusions may automatically fill in the gaps, which negatively affects a person’s self-knowledge. Now the question has changed to “How do I tell my child that she is on the spectrum?” I have developed these guidelines in the years since 1990 when I first tried to explain autism spectrum disorder (ASD) to a 10-year-old boy, one of my former students. The method must be autism-friendly! These ideas are visually clear and orderly, and features the familiar process of sorting concrete pieces of information into two categories.
Read on for ideas about when and how to tell your child about ASD.
When to Tell Your Child
Timing. Some people recommend that the time to tell your child is at the time you discover the child’s ASD diagnosis although many parents prefer to first give themselves time to digest the information. Some parents have introduced ASD to their five-year-old child. Some wait until the child is seven or eight. Many have first told their child at nine or ten years of age, or later. You know your child best. Follow your instinct.
Listen to your child. If you haven’t yet, you will know for sure that it is time to introduce the subject when he says or does something that indicates that he feels different from other children. Of course he might not ask directly. For example, one seven-year-old boy came home after school and told his mother, “Buy me a new brain!” Keep in mind that by the time he says something aloud, it might have been on his mind for a while. For some children it may take many conversations throughout the year or the following years before they embrace, or even remember, the information. For others it clicks right away and they feel a sense of relief!
Before puberty. Some parents do not observe any indication that their young child wonders about herself compared to peers. In any case it is usually best to tell her before puberty, even if she does not ask or indicate a wondering. Waiting for the time “when she is older” to tell your child can make it more difficult for both of you. There are too many new things to adjust to during puberty and adolescence. Most teenagers resist their parents telling them something that might be uncomfortable to hear at that stage – especially if it is perceived about being different than others. Of course, if you are just now discovering about ASD and your child is a teenager, you did not have the option to tell her earlier. You probably should not wait any longer to tell her. This is information that she needs to have as she strives to make sense of daily experiences.
How to Tell Your Child
Familiarity. Familiarity makes things easier. Let your child hear and see the words autism spectrum disorder or Asperger’s Syndrome (AS) early on, as young as possible. Simply let him hear you and other family members use these words as part of everyday conversation. You do not necessarily have to define it when you are talking—just use the words. Related books, magazines, and videos about autism can be visible around the home.
Write lists/get perspective. Help your child see that every person has strengths and challenges. Help him develop perspective about his strengths and challenges—that he is not the only one who has challenges or strengths. With your child’s help write the name of each family member (and/or other significant children and adults) on separate sheets of paper. Draw a line down the center of each page, dividing it in half. Use one side for strengths, the other for challenges. Define strengths as talents – good skills – activities that might feel natural, easy, and probably enjoyable. Define challenges as activities that need more practice or more time to accomplish—things that may feel difficult or uninteresting. After making these lists of strengths and challenges for each person, write your child’s name at the top of another sheet of paper. (See the diagram at the end of this article.)
On your child’s paper follow the same procedure. On the “strengths” side, you then list what is true in his case – perhaps it is having a great memory, or being an excellent speller-of-words. Do the same for the “challenges” side (e.g., handwriting, making friends, or whatever is true in his case.)
Then go on to add “autism” in the strength list. Use the term that is most accurate in your child’s situation, or the one that you feel most comfortable with—it may not be autism; it may be autism spectrum, ASD, Aspergers, or another term that has been given. When adding “autism” (or another term) to the list, explain that one of the reasons he has some of his strengths is that he has an autistic style of thinking and learning, which is another thing about him that is a strength. Then add the same diagnostic term to the list of his challenges. Explain that his challenges are because autism affects other parts of life that may be more difficult. Here you can also refer him to the lists of challenges that were made for the other people in his life. Help him see that he’s not alone; everyone has challenges as well as strengths.
In good company. You might also write a list of famous people throughout history and current prominent individuals who are thought to have had characteristics related to autism. You can make similar lists (strengths and challenges) for these famous people. For example, Einstein had difficulty making friends and he had a narrow focus of interests. Be careful to make it clear that most people on the autism spectrum are not famous nor are they geniuses. For more information see the book, Asperger’s and Self-Esteem: Insight and Hope Through Famous Role Models by Norm Ledgin (Future Horizons, 2005) and Different Like Me: My Book of Autism Heroes by Jennifer Elder (Jessica Kingsley, 2006). Searching the Internet will reveal many well-known personalities thought (or known) to be “Aspies”.
Ask for help from those you trust. Some parents prefer that a trusted friend, family member, or therapist introduce this information, especially if the newly diagnosed person is a teenager. Depending on your child, it may be easier for both of you if someone else introduces the diagnosis.
Type or write. You also can sit side by side at a tablet or computer and have a written conversation in silence by taking turns typing. Ask your child, “Do you want to just read and type, or read and listen at the same time?” Remember that reading makes new information more easily digestible for autistic processing. The added bonus is that you can print out the conversation, and give it to her so she can read it again on her own time, in her own space. It is highly recommended for you to learn to write Social Stories™ to help you share information accurately, in an autism-friendly writing style. (There is a lot of misinformation about the process of writing and using Social Stories, so make sure you look for books and workshops that are authorized by Carol Gray and Team Social Stories™…and look for the trademark (TM).
Lifelong process. Self-knowledge is a process that continues throughout every person’s life. Do not try to explain everything you know about ASD to your child all at once. Speak and write in a reassuring and calm manner. Keep it straightforward, simple, and clear. If you don’t know the answer to a question, say so. Say “I don’t know. Let’s try to find the answer.” Continue the discussion as your child matures. Use my book, Autism…What Does It Mean to Me? and Communication: What Does It Mean To Me?, as well as other helpful publication and websites. It is particularly important for older children, teens, and adults to read what autistic writers have written, or lecture about. Meeting and listening to adults with autism is important both for parents and children, alike.
Self-advocacy. Knowledge is a precursor to helping your child learn to advocate for himself as he grows. He must understand his strengths and challenges—and what can help. Help him learn when and how to ask for help, and whom to turn to when he needs assistance. Educating key people in his life is also a necessity. For many individuals on the spectrum, educating others about autism, with the altruistic purpose of contributing to the betterment of society in general, has become a source of pride and accomplishment.
Self-knowledge is a lifelong process. Help your child on her journey of self-understanding in a positive, autism-friendly way.
Name of person
(these might feel natural, easy, and enjoyable)
- Talent and/or skill
(these might feel difficult or uninteresting)
- Skill that needs more practice or more time to accomplish