Sharing an Autism Diagnosis with Your Child

This article was part of a guest blog featured on Learn with Dr. Emily

Has your child recently been diagnosed with autism? And are you wondering if/how to share this information with them? Here we will explain why it is important for a child to understand how they think and learn, and we will share ideas for how to speak with them about their diagnosis.

First, get comfortable with your child’s diagnosis:

Before sharing information with your child, make sure that you have had a thorough discussion with the doctor/evaluator, that you have all your questions answered, and that you understand your child’s profile.

Many parents are hesitant to share a diagnosis because they worry about their child’s reaction to being “labelled.” They fear that their child will feel badly about themselves and their abilities when they learn about their diagnosis. However, it is important to remember that children are often much more self-aware than we realize. They often have a sense that they are struggling with something, and without an explanation, they are unfortunately prone toward making negative self-attributions (e.g., “No one likes me,” “I’m not as good as my classmates”) and applying inappropriate negative labels (e.g., “I’m weird”).

Telling them about their diagnosis (i.e., giving them an accurate and appropriate label to use) and explaining their individual profile of strengths and weaknesses about how they think and learn can help dispel these misconceptions and create more positive self-attributions.

Decide who will provide the feedback and how:

When they’re ready, parents can enlist the help of their neuropsychologist, psychologist, or pediatrician to provide direct feedback to their child. Alternately, the discussion may arise organically. For example, if your child expresses frustration about something (e.g., “It is so frustrating that my classmates won’t play by my rules,” “I wish I had more friends”), this is an opportunity to initiate the discussion (e.g., “well, I spoke with your doctor and learned why you might be having that experience”).

Then have the conversation:

We recommend using trusted words of your child’s (e.g., “remember when you said…”) or those of a trusted adult (e.g., “your teacher mentioned...” or “I heard from your coach that…”).

It is also important to recognize and discuss the idea that we all have strengths and weaknesses. It is important to celebrate those strengths as well as discuss areas of difficulty. You can give examples from your child’s profile and even incorporate some of your own experiences as well (e.g., “you are amazing at solving puzzles, which is a little harder for me!”).

Then introduce the idea of neurodiversity. You can explain how neurodiversity is to human culture as biodiversity is to the ecosystem, helping your child understand that people experience and interact with the world around them in many different ways, and that there is no single “right” way of thinking, learning, or behaving. You can also emphasize that there are many strengths associated with having a different thinking brain. For example, autistic individuals often are strong at noticing details, can focus passionately on preferred topics (which can be an amazing advantage when channeled into future careers), feel strongly about fairness, honesty, and justice, and care about other people’s feelings.

This leads into naming the diagnosis. You can share that there is a name for this type of profile and it is called autism. Check in with your child to see if they know anything about this diagnosis, and then educate them about it (e.g., “this means that it can be challenging to socialize or communicate in some situations and with certain people and that you may feel more comfortable when things are a certain way”). This is an excellent opportunity to discuss and dispel any misconceptions they may have.

Finally, talk about the next steps, and the plans that are being established to support your child. For example, they may wish to establish relationships with other autistic individuals by joining a group or club or may wish to build relationships with non-autistic individuals by learning to navigate through the invisible rules of friendship with a therapist. They may need access to sensory accommodations such as noise-cancelling headphones or get other accommodations in school such as early notification to any changes in their schedule.

Give your child time to process this information, and provide them with developmentally appropriate resources:

Many children are relieved when they learn about their profile. However, it is also important to understand that your child may not initially identify with the diagnosis and may need more time to think and learn about it. If this is the case, we recommend that you validate your child’s feelings and give them the space and time they need to process the information.

Regardless of your child’s initial reaction, this will be an ongoing conversation, which will evolve and mature as your child gets older. Encourage them to ask questions, and provide developmentally appropriate resources, such as our book Different Thinkers: Autism, which explains brain development and autism for an elementary-aged child. You can also connect your child with peers or family members who have similar profiles, to provide them with a sense of belonging.

Remember that while the neurotypical world can be a little more challenging to navigate as a neurodivergent individual, there are also many advantages to having a different thinking style. Different thinkers can and do make wonderful things happen!