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10 Guidelines for Telling Your Child about ASD

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Ten Guidelines for Telling Your Child about ASD

By Catherine Faherty

Autism Asperger’s Digest | July/August 2012

 

Back in the 1980s and 1990s, a highly controversial topic of conversation among parents and professionals was the question, “Should we tell our child that he has autism?” Today we have learned 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 could negatively affect a person’s self-understanding. Now the question has changed to “How do I tell my child that he 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 is autism-friendly, using a visual strategy and the process of sorting concrete bits of information into two lists.

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. Follow your instinct.

Listen. If you haven’t yet you will know for sure that it is time to introduce the subject when she says or does something that indicates she may feel different from her peers. Of course she might not ask directly. For example, one 7-year-old girl came home after school and told her mother to “buy me a new brain!” Keep in mind that by the time she says something aloud, it might have been on her 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 himself compared to peers. In any case it is usually best to tell him before puberty, even if he does not ask or indicate wonder. Waiting for the time “when he 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 about being different. Of course, if you are just now discovering about ASD and your child is a teenager, you did not have the option to tell him earlier. You probably should not wait any longer to tell him. This is information that he needs to have as he 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. 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 and magazines 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.

On your child’s paper follow the same procedure. Then write AS 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 AS; it may be autism, high functioning autism, or ASD. When adding AS (or the term you used) to the list, explain that one of the reasons he has some of his strengths (e.g., great memory, excellent speller) is that he has AS, 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 (e.g., handwriting, making friends) are because AS affects other parts of life considered to be potential difficulties. Here you can also refer him to the lists of challenges that were made for other people. He’s not alone; everyone has challenges as well as strengths.

In good company. You then might also write a list of famous people throughout history and current prominent persons who are thought to have had characteristics related to ASD. 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 with AS 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).

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.

Type or write. Sit side by side at the computer and have a written conversation in silence by taking turns typing. Or talk while typing. Ask your child, “Do you want to just read, or read and listen at the same time?” Remember that reading makes new information more easily digestible for most individuals with ASD. The added bonus is that he can take the paper with him and read it again on his own time, in his own space. Learn to write Social StoriesÔ to help you share accurate social information with the child or adult on the spectrum.

Lifelong process. Self-knowledge is a process that continues throughout a 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. Look for the answer together. Continue the discussion as your child matures. You may want to use my book, Asperger’s…What Does It Mean to Me? (Future Horizons, 2006). For adults with ASD and those who work on their behalf, see the Resources below.

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 some 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. You can help your child begin his journey of self-understanding in a positive, autism-friendly way.

BIO

Catherine Faherty is a TEACCH psychoeducational specialist and autism teacher trainer in North Carolina. She is the author of three books on autism, including Communication: What Does It Mean to Me? (Future Horizons, 2010).

Resources

Gaus, V. 2011. Living Well on the Spectrum: How to Use Your Strengths to Meet the Challenges of Asperger Syndrome/High-Functioning Autism. New York: Guilford Press.

Grandin, T., and S. Barron. 2005. Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism. Arlington, TX: Future Horizons.

Zaks, Z. 2006. Life and Love: Positive Strategies for Autistic Adults. Overland Park, KS: AAPC.

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Distribution via print means prohibited without written permission of publisher.


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