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Sharing an Autism Diagnosis with Your Child, Part Two: The Conversation is a Journey

There is no one right way or time to share an autism diagnosis with your child. And, the sharing really isn’t a single event: it’s a dynamic journey of small conversations over time. The first step is preparing yourself and your child (see Sharing an Autism Diagnosis with Your Child, Part One: Preparing Ahead of Time for ideas). After you take whatever time you need to educate yourself, begin to process your own feelings, and teach your child about neurodiversity, you are likely to feel more comfortable and ready to have a positive conversation about autism with your child. In addition, your child is likely to have a more accurate and positive baseline for understanding their autism diagnosis in the broader context of human diversity.

 

Factors to Consider

A child’s age, maturity, and cognitive abilities should be considered when sharing an autism diagnosis. Has the child already developed an awareness that they are somehow different from neurotypical children or that neurotypical children are somehow different from them? Have they absorbed any negative stereotypes related to human diversity or been bullied by their neurotypical peers for being different from them? Are they already aware of your advocacy at school to ensure that their needs are met? If the answer is yes, then your child needs your support to understand their autism and that any bullying behavior they’ve experienced from others is unjust and not their fault.

Focusing on concrete experiences or behaviors that your child is already aware of, and using simple metaphors they can relate to at their age level, may help a rather abstract diagnosis make more sense to your child. 

“For example, to explain executive functioning difficulties, you may talk about a huge pile of papers, with no folders to organize them. To explain cognitive inflexibility, you may talk about a child’s brain getting ‘stuck’ and unable to move past something. For emotional dysregulation, you may talk about a child whose feelings feel way too big for his little body, and for social deficits, you may talk about going to visit a foreign country and feeling like you have a hard time understanding the language or culture.” (Sandler and Rosenthal 2015)

 

Answering Your Child’s Questions

Before knowing their diagnosis, your child may have already asked questions that relate to being autistic, like “Why do I have to get pulled out of my classroom to go see Miss Jayna?” or “What’s wrong with me?” or “What’s wrong with people?” or “Why do I go to Sandbox?” If you are reading this post, you may have found a way to answer or redirect the conversation without revealing the diagnosis yet—or your child might not yet have received an autism diagnosis. Regardless, questions like these show that your child is trying to understand their experience, is seeking your help, and would likely benefit from information about their diagnosis. If it’s been a while since they’ve asked a question similar to those above, you can open a conversation something like, “Remember last month when you asked about getting pulled out of your classroom to go see Miss Jayna? Well, I have some new information that may help that make sense….” 

Keep the information simple, direct, and factual without requiring them to make inferences to understand you. And, because children often ask more questions as they mature, you can share information in a gradual way as your child shows the readiness to learn more.

 

Relating Your Child’s Diagnosis to Another Diagnosis

Autistic children often have other diagnoses—such as anxiety, attention deficit hyperactivity disorder (ADHD), epilepsy, depression, motor difficulties, or obsessive compulsive disorder (OCD)—that they already know about. If this is the case for your child, you might be able to make a comparison to an earlier diagnosis to help them better understand the new diagnosis. Just like with the other diagnosis, you can talk with your child about autism: what it’s like for your child to be autistic, how they feel about learning about the new diagnosis, the kinds of support services your child has or will have for autism, and whatever else they want to know. 

 

Start Small and Focus on Strengths

There’s no need to share every detail about autism in your first conversation with your child. In fact, hearing too much information at once can be overwhelming for a child. You can start small and remind them of key positive points they learned earlier when you prepared them by teaching them about neurodiversity, such as everyone has similarities, differences, strengths, and weaknesses.

You can start the conversation with how much you love them and how proud you are of them. You can talk about the strengths that you see in your child and ask them what other strengths they see. If your child is mature enough to wonder about their future, it may help them to know that lots of people have autism and lots of autistic people learn how to apply their strengths in their work. Reassure them that you will help them find the support they need for the challenges they face. If they are already receiving therapy of some kind, you can explain how it is helping them to learn new skills, like how to make friends or manage their anxiety.

As your child grows and experiences their autism in different ways, you can keep the ongoing conversation open to new questions and new information. If you don’t know the answer to a question, you can let your child know that you will try to find it—and then let them know when you have found it.

 

Honor Their Feelings

When children learn that they have been diagnosed with autism, they can react in a wide variety of ways. Some children will feel a sense of relief: their experiences now make sense. Some children will feel a sense of belonging: rather than being alone, they are part of a large group of people on the autism spectrum—from other kids and adults in their community to famous people presumed or known to have autism, such as Albert Einstein, Amadeus Mozart, Darryl Hannah, Emily Dickinson, John Elder Robison, Michelangelo, Susan Boyle, and Temple Grandin. Some children will feel excited and proud of their autism diagnosis. Other children will feel sad or angry, especially if they’ve already struggled with significant challenges or been bullied for having autistic characteristics. They might ask “Why do I have to deal with all this? It’s not fair!” 

Whatever your child’s feelings are (and they’re likely to vary over time), it’s important that you listen and let them know that their emotions are OK. As you end a conversation, always make sure your child knows that you love them, support them, and are proud of them!

 

Books

Books can help children understand that they are not alone, give them words to talk about their thoughts and feelings, and begin to appreciate the diversity among autistic people. (And that diversity truly is huge. My favorite saying about autism is: “When you’ve met one person with autism, you’ve met one person with autism.”) Perhaps most importantly, when you share a book about autism with your child, you are sending them the clear message that their autism diagnosis is something that is perfectly fine to talk about, you are there to support them as they learn about being autistic, and you love them as they are. You can find book ideas here, here, and here

 

How to Find Out More

For more information about sharing an autism diagnosis with your child or to discuss how our team can evaluate or provide services for your child, please don’t hesitate to book an initial consultation. Sharing an Autism Diagnosis with Your Child, Part One: Preparing Ahead of Time offers ideas for how to prepare yourself and your child for talking about their autism diagnosis.

 

Cynthia Good, MS, LMHCA, CATSM, IBCLC

Therapist and Parent Coordinator

Posted by Ryan J. Conley / Posted on 15 Jan
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