TALKING WITH KIDDOS AND SIBLINGS ABOUT AN AUTISM DIAGNOSIS
“No legacy is so rich as honesty.” – William Shakespeare
Children look to parents for strength and knowledge, and we strive to help our children cope with whatever life throws at them. That includes giving children the support and information they need by introducing critical topics as they grow and mature. When a child is diagnosed with autism, having age-appropriate information about their diagnosis may help them understand an essential aspect of their role in the world. You may worry, however, that learning about a developmental diagnosis may cause them anxiety or self-doubt. You may be unsure about your child’s ability to understand, especially if their language is still emerging or they are preverbal. Maybe you have just learned about their diagnosis and are in the early stages of educating yourself about autism spectrum disorder.
Wherever your level of knowledge about neurodiversity, you are always the expert of your child. In making decisions about how, when, and what to tell a child about an autism diagnosis, trust your instincts! You can be sure children develop ideas about events in their lives, such as doctor and therapy appointments. Talking directly about their autism diagnosis allows you to encourage questions about these events and ensures your child is learning from the most significant people in their lives.
If you start early, it won’t be a high-impact topic, and you talk about it the way you talk about other subjects.
Perhaps the most crucial reason for generating discussions about autism spectrum disorder is to focus on strengths related to this diagnosis. We all need to establish a positive view of our individuality. There are times when all of us struggle to fit in and other times when we embrace our uniqueness. Therefore, cultivate a positive attitude about differences; emphasize that your family is not afraid to cherish differences. Preschoolers tend to focus on concrete, physical differences, such as height, so start with simple examples of family differences. As children grow, their awareness of individual differences tends to center on preferences; “you like football, your brother prefers swimming.” By the time children are teens, a need to affiliate with others may come to the forefront. You might point out shared values family members embrace (e.g., honesty), as well as what makes each family member special (interests and appearance).
There may not be a perfect age or time to talk to your child about autism. However, many adults on the autism spectrum, including the autism educator Dr. Stephen Shore, provide guiding principles:
First and perhaps foremost, sooner is better than later. If you start early, it won’t be a high-impact topic, and you talk about it the way you talk about other subjects. If you start early, you open the door for future discussion. If you start early, you can make sure your child gets accurate information directly from you.
Second, take into consideration your child’s personality. A child’s ability to process and comprehend, their social sensitivities, and their curiosity, are all considerations in what and how much you tell. Even if your child is too young to show an interest, older siblings can participate in the conversation.
Thirdly, children often signal by their questions when they are ready for information. Questions give you a place to start because questions indicate your child is ready for the answers. Other children, however, may have similar thoughts but are not able or prepared to express them verbally.
In that event, start with something familiar to your child. Noted autism scholars, such as Dr. Shore, often recommend balancing aptitudes with challenges. Draw attention to your child’s keen ability to focus on a specific topic of interest. Next, point out that some children who have autism have a superpower focus allowing them to learn all about dinosaurs, the solar system, etc. When appropriate, however, you may want to remind them that “not everyone shares this superpower and may not be as interested in or knowledgeable about dinosaurs or the solar system as you are…”
Explaining an autism spectrum diagnosis to a child is not likely a one-time talk; it is an ongoing process.
Perhaps you will explain autism in the context of sensitivities: “loud noises are hard for you; some children who have autism have a difficult time with loud noises, let people know when you need a break.” Also, explain that autism is a spectrum: “some children with autism do not use words to communicate; you really like to talk.” Autism Speaks offers an abundance of resources for explaining autism to verbal children (Murillo & Naeder, 2017).
If your child is preverbal, make the most of playtime and art to emphasize their strengths. Follow their lead and narrate their play to show appreciation of their interests. Find positive models they can identify with, such as Julia from Sesame Street. Children’s books are terrific mediating steps for verbal and non-verbal children, providing children a safe way to project emotions. Books also take advantage of how children often learn best; by identifying with others. Two children’s books you may want on your bookshelf: Uniquely Wired: A Story About Autism and It’s Gifts, by Julia Cook, and The Superhero Brain: Explaining Autism to Empower Kids,” by Christel Land.
Explaining an autism spectrum diagnosis to a child is not likely a one-time talk; it is an ongoing process. Your child needs time to assimilate the new information about themselves at their own pace. Don’t rush it; allow them to digest information in a manner that fits their needs. Weeks even months might go by before your child revisits the subject. When they do, be sure to maintain a matter-of-fact, positive attitude; remember your child will mirror your perspective.
Your child may understand autism differently as they get older, and they may develop new questions. Maybe they want to know what to tell classmates about autism spectrum disorder. Give them a simple script, such as, “I have a hard time with loud noise. It is because I have autism. That explains why listening to the band is not always fun for me, and sometimes I need to go to a quiet place.”
You may be your child’s best advocate, but you can’t always go it alone.
Consider involving siblings in the explanation process. Talking to a sibling about autism is much like telling your child who is on the autism spectrum, in that you talk about both talents and associated challenges (“your brother knows a lot about this specific topic; sometimes, he has to be reminded that not everyone is as fascinated by WWII fighting planes”). Autism Speaks offers tips for helping siblings understand autism spectrum disorder (“A Sibling’s Guide to Autism,” 2018). What I love about their suggestions is that they normalize the needs and emotions of siblings. All siblings need time alone with their parents. All siblings experience ambivalent feelings toward their siblings. All siblings need to find activities they can share with their siblings and develop patience for their sibling’s interests when they differ from their own.
Many families choose to engage the assistance of a professional specialized in child development to facilitate the disclosure process. You may be your child’s best advocate, but you can’t always go it alone. A professional (e.g., child’s doctor, therapist) tasked with educating the family about autism spectrum can provide objective information and recommendations for the entire family. They may also help you see things from your child’s perspective and thus create the most supportive environment. The Indiana Resource Center for Autism provides more guidance for seeking professional assistance in this process (Wheeler, 2021).
You may even find your child’s learning process mirrors your personal journey. Think back to the broad spectrum of emotions you experienced when you first learned of your child’s diagnosis and the resources you mobilized and prioritized for your child’s well-being. Now you can draw on these same resources to support and teach your child about their autism spectrum diagnosis. Your judgment and courage have taken you far in this process; trust your instincts. To paraphrase Mr. Fred Rogers, the freedom communication and honesty bring is “worth the trying.”
ABOUT THE AUTHOR
Traci Jordan, Psy.D., L.S.S.P. holds a dual license in clinical and school psychology, and has assessment experience with a wide range of developmental, cognitive, psychological problems and challenges. She has a lifelong passion for child development and family systems, completing pre and postdoctoral training in child clinical and developmental pediatrics before opening a private practice focused on child assessment and treatment. She draws on her 30 years of experience in assessment and research methods to develop and teach a core graduate level class in psychodiagnostics through the Department of Educational Counseling of Texas A&M Corpus Christi. A mother and tireless advocate for children and diversity in her personal life; She is proud of serving as a foster parent for 10 years and as a board member for Nueces County Court Appointed Special Advocates (CASA). Yoga, family, friends, and pets keep her centered.
Cook, J. (2018). Uniquely Wired: A Story About Autism and It’s Gifts. Boys Town Press.