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Many parents are unsure about how to speak to their child with autism spectrum disorder (ASD) about the diagnosis. Parents may fear a number of reactions: that their child will not understand, become angry or depressed, or use ASD as an excuse for why he or she cannot do some things. While some children can find the news upsetting, the information can also come as a relief, as found by a group of researchers that interviewed 9 individuals with high-functioning ASD, aged 16 to 21. Most children reported feeling a sense of shock and disbelief when first informed of the diagnosis, but seemed able to incorporate the idea of “having ASD” into their identity by the time of the interview. Some expressed that learning that they were on the autism spectrum helped them understand why they had experienced various difficulties and had been treated differently. It also provided a reason for their behavior that they thought others might understand (Huws & Jones, 2008).
Discussing an ASD diagnosis with your child is a very important issue that many parents seek advice on. This article provides some tips for explaining your child’s diagnosis to her or him and will provide some resources that can guide you. It is important to remember that each individual with ASD is different and that there are many factors that influence a parent’s decision about when and how to inform a child about the ASD diagnosis. Chronological and mental age, for example, can be key factors in considering whether or not a child will be ready to talk about ASD. While a very young child may not be able to make sense out of “having ASD,” an older child without intellectual disabilities who is experiencing difficulties in school and beyond may desperately need an explanation. Although this article can provide some general guidance, it is important to take into account you and your child’s personal circumstances along with your own insight about your child’s needs.
Start early with younger children. With younger children, it might be helpful to begin speaking about how there is so much diversity among people and how people do things in their own unique ways. If your child has trouble relating to differences among people, it might be helpful to explore differences among things of special interest such as animals, trains, or cartoon characters. Emphasizing that we all have something that makes us special can help children learn to perceive, communicate, and accept difference.
Be attuned to when your child is asking questions. When your child is asking questions about why she or he is different or why certain activities are more difficult, it might be time to consider having a conversation about the diagnosis.
Seek insight from others. In preparing for the conversation, it might be helpful to speak to close friends, relatives, and family about how they interact with your child. These insights can help you consider your child’s behavior from various perspectives and give you and your child a sense of what others might be wondering when they interact with him or her.
Bring your child into the conversation as much as possible. It is important to let your child know that his or her opinion is valuable by asking questions and encouraging your child to contribute to the conversation to the extent possible. Try to find out if your child has specific questions. For example, your child might wonder why he or she is switching to a different classroom or having trouble making friends. Let your child’s conversations guide the conversation and help address his or her personal concerns. This approach will encourage your child to come to you when there are future challenges or questions.
Avoid technical terms and be specific in describing strengths and challenges. Rather than describing autism as a disability, explain it as a way in which your child’s brain works. Scientific terminology can be confusing and overwhelming for some children. It is important to use the word “autism” in context and describe how it relates to your child. For example, it might be helpful to show how the condition explains some of the challenges he or she is currently facing along with his or her many strengths. Conversations are different for each child but a parent might say something like:
“Everyone has strengths and challenges. For example, your brother is good at soccer but not so good at science, which is one of your special talents. Many kids with autism have certain challenges. Remember that group project you missed doing because the noise was bothering you? Many kids with autism have a hard time paying attention because there are so many things happening around them. Your new teacher can help you learn how to deal with these challenges.”
Make a list of famous people who have or are thought to have had characteristics related to ASD. The list can include the strengths and challenges that prominent individuals throughout history and the present have experienced. For example, Einstein struggled to make friends and had a narrow focus of interests. It is important to be clear, however, that most people with ASD and most people in general are neither famous nor geniuses.
Help your child think about how she thinks. It might help to work with your child to reflect on how he or she thinks. For example, you might help your child observe how his or her brain is very focused on animals, but might change over time to focus on different things. You might also help your child observe how his or her brain is sometimes less focused on certain tasks and suggest ways to help refocus. Using colors to represent different personalities, for example blue for calm and red for active, can help your child describe him or herself and others as well.
Also point out how people are alike. While exploring your child’s particular differences, it is also important to emphasize how people are similar. We all feel sad or angry at times and have various strengths and challenges that help us learn, grow, and change over time.
Let your child know that “you are not autism.” Your child may or may not want to share that he or she has autism. Let your child know that this is his or her choice. You might want to tell your child that knowing you have autism may help you understand why you feel differently, but it doesn’t have to define you.
Help your child explain his or her autism to others in specific situations. Your child will likely encounter interactions in which others do not understand his or her behavior. It might be useful to help your child develop language that he or she can use to talk to others about his or her needs. For example, you might say, “You know how it bothers you to change the route when we walk to school? Some people might not understand why this change bothers you so much. You can tell them that you have a hard time with change.”
Do it gradually when everyone is calm. Talking to your child about autism is not a one-time conversation. It might be helpful to get a sense of the questions your child has in the moment and guide each conversation depending on your child’s needs. It is important not to have these discussions during stressful times and during or after meltdowns since these circumstances prevent effective communication.
Get help from books and other sources. Reading about autism or watching films with characters who have autism may be helpful ways to start a discussion and move from generalizations or the experience of others toward talking specifically about your child’s experiences. A workbook that parents and children can use together is:
Other helpful resources are:
We hope this gives you some ideas about how to talk to your child about having an autism diagnosis. We would love to hear about your ideas and experiences regarding this important conversation. Please let us know your thoughts below.
For more information, below are resources compiled by Autism Speaks.
Autism Basics (“What to Keep in Mind,” “How Best to Help”), from the Autism Speaks School Community Tool Kit. Also see the “About Me” profile form in this tool kit’s appendix. It’s a helpful tool for engaging your child in a discussion of his strengths, challenges and goals.
Parents Seek Help Discussing Autism with Newly Diagnosed 9 Year Old, an Autism Speaks blog post by psychologist Lauren Elder
Should You Tell your Child about his/her Autism Diagnosis? A video interview with autism educator Stephen Shore.
Grace Chen is currently pursuing an Ed.M. in Arts in Education at Harvard Graduate School of Education. She has been a teaching artist, curriculum developer, and research assistant focusing on innovative evaluations in out-of-school time programs. She hopes to develop resonant and empowering art programs by partnering with youth in educational research and practice.