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Tips for talking to kids about autism, and why it’s important to tell them
Writer: Laina Richards
When a child receives an autism spectrum diagnosis, you may wonder how it will affect their life and what support they might need. You might also have a hard time figuring out when and how to tell your child. The answer may be different for each child, as there are no two autistic children who are exactly alike, just as there are no two individuals who are exactly alike.
Why you shouldn’t delay telling them
Many parents worry about how their child’s diagnosis will be perceived by others, particularly other children. “Nobody wants their child to be ostracized, have a ‘label,’ or thought of as ‘different’ in their peer group,” says Alexis Bancroft, PhD, a psychologist in the Autism Center at the Child Mind Institute. However, if you’ve decided to seek an autism evaluation for your child, you may already be noticing differences in their behavior or development. Your child and their peers will soon become aware of those differences as well, if they haven’t already.
Stigma can be a problem, but kids tend to be more critical of “different” behavior when they don’t understand it, Dr. Bancroft explains. “Stigma happens when we don’t diagnose, and we don’t share.” She points to a study showing that first impressions of adults with anautism spectrum disorder improved when the diagnosis was disclosed and when peers had more information about the disorder.
Kids can be harsh toward each other but similarly harsh toward themselves. Undiagnosed kids with autism may worry there’s something wrong with them, unable to pinpoint why they feel different from other kids their age. This can cause a great deal of anxiety. And not being upfront about a child’s diagnosis might also lead them to eventually believe there is something shameful about it. “When you learn about your diagnosis very early on, it becomes a natural part of who you are,” says Dr. Bancroft.
In a study of the perspectives of autistic university students, participants who learned that they were autistic when they were younger reported a better overall quality of life than students who did not learn about their diagnosis until they were older. “Findings suggest that telling a child that they are autistic at a younger age empowers them by providing access to support and a foundation for self-understanding that helps them thrive in adulthood,” the authors wrote.
However, just because it’s beneficial to share your child’s diagnosis with them early in life does not mean this is a conversation to take lightly.
How to start the conversation
“There’s no one thing that you can do to be prepared to share the information,” says Dr. Bancroft, but parents should do their own research — reading books or listening to podcasts, including some by self-advocates — before starting a conversation with their child. “Understanding different perspectives about autism and what it means, and how it presents within the community, can be helpful.”
You might need time to wrap your mind around what exactly it means to have autism, and what exactly it means for your child to have autism, notes Dr. Bancroft, because every child is different. She also recommends talking to people close to you about it and getting support when you need it, particularly if you feel overwhelmed. You may want to meet with a mental health professional yourself.
Kids pick up on a lot, so it’s important you’re able to manage your emotions and nonverbal behaviors before you talk to them. It is also helpful to pick a time and location where you and your child both feel relaxed and can focus. “They might not always remember what you say when you share the diagnosis with them, but they’re always going to remember how you made them feel,” says Dr. Bancroft.
Dr. Bancroft recommends preparing to answer questions they might have. But if you don’t know the answer to a question, you can always say, “I don’t know, I’m learning about this too. Let’s find out together.’” Just make sure you follow up.
Focus on their strengths
When explaining an autism diagnosis to a child, Dr. Bancroft suggests starting with their strengths. Then acknowledge the challenges they have faced and might face in the future — framing them as differences rather than flaws and emphasizing that these challenges are not their fault. Remind them that this diagnosis will help them get the support they need, and you’ll be with them every step of the way.
“There’s nothing wrong or damaged, or really anything that needs to be changed about the way their brain works or about who they are as people,” says Dr. Bancroft. “People with autism might need some extra help with certain things, but you can also point out that everybody has challenges. All people have things that they need help with.”
If your child has a special interest, you might want to start with that strength, reminding them that they know everything there is to know about Pokémon or the New York City subway map, and that their friends don’t know those things as well.
What to say and what not to say
After you talk about one of their strengths, you might then turn to one of their challenges. Dr. Bancroft gives this example: “You know how sometimes you might not understand why some kids will say the things that they do, or do the things that they do? Kids with autism might have a hard time understanding what people want and what they’re thinking if they don’t say it out loud.”
An example Dr. Bancroft gives for a reframing a challenge is: “Instead of saying, ‘Autism is characterized by lack of conversation,’ you might want to say something like, ‘Having autism means you tend to talk passionately about your special interests while you’re less excited about small talk.’”
Reminding them that these challenges are not their fault might look like this: “Sometimes kids with autism can feel out of control when they get upset, and they can have some meltdowns. It’s not your fault,” or “Sometimes you might have different ways of calming your body or showing that you’re excited. That’s OK.”
How to handle a negative reaction
If a child is angry, scared, or has a strong negative reaction to the news, the best thing a parent can do is validate their emotions rather than trying to get them to calm down right away or see the positives in the diagnosis. In the moment, they need to know that you are going to help them navigate their challenges and get the support they need.
You can talk about the team you’re building to support them — their doctors, teachers, and family members, for example — and how that team will share strategies to address their challenges and help them feel better. Any conversation about a lifelong diagnosis will be an ongoing one, so don’t worry about fitting everything into the first discussion.
Choose specific wording for your child
How you describe an autism diagnosis depends on your child. Dr. Bancroft suggests considering their developmental level, language level, and readiness to hear the news in addition to their age.
They might wonder about the evaluation, noticing differences between themselves and their peers, or asking questions like “What’s wrong with me?” or “Why do I keep doing that?” These are critical moments to open up a conversation about neuro-divergence, and Dr. Bancroft suggests doing so by replying directly. For example, “There’s this thing called autism that’s making it more difficult for you to read social cues. It’s not that there’s something wrong with you. It’s just harder for you to pick up on those cues. We can work on that together.” The language you use during this strengths-based conversation depends on the child. Here are some suggestions for different age groups:
Children in preschool — or with similar developmental and language levels — might not be able to understand what having autism means. It helps to talk in simple terms of who they are, explaining autism as “just a fact, a way of life,” says Dr. Bancroft.
“Preschool is a time when kids are starting to learn about differences and beginning to notice differences in themselves and their peers in general.” She adds that preschool children are also very loving and forgiving. “So, the way that I like to coach parents in the pre-K years is by using different phrases such as, ‘Your brain is amazing, and it might work a little differently than some of your friends. Everyone’s brain works a bit differently.’” It might even be helpful to compare yourself to another loved one and discuss what comes more easily to each of you.
In these younger years, she says, “It’s best to keep it short, simple, and concrete. Focus on observable behaviors and other tangible examples your child can wrap their mind around. You want to normalize, ask if they have any questions, and then let them move on. Your child may be ready to move on from the conversation before you are — and that’s okay.”
School-aged children will be more aware of the evaluation process, and they might be ready for a frank conversation about the diagnosis. They will likely have direct questions as well. Otherwise, much of the approach stays the same. “It’s just that the language you use becomes more sophisticated over time,” Dr. Bancroft says. You still want to use a strengths-based approach tailored to their specific talents and challenges, follow their curiosity, and use words they understand.
Teens and young adults who are receiving a new autism diagnosis likely already have seen information about it on social media. “Maybe they’ve done the TikTok deep dive, and they’re saying, ‘Oh, some of these things, they ring true for me.’”
If not, they will probably look up the diagnosis online and on social media afterward. TikTok, in particular, is a topic of conversation among clinicians right now, since many creators are making videos about autism. Dr. Bancroft says it’s useful to remind teens that not everything on TikTok is based in fact.
There is plenty of reputable information about autism available online to direct them toward if they want to know more. Parents may also want to speak to their teenagers about how algorithms work, serving them more and more content about autism if they keep watching it, for example.
More generally, parents should pay attention to what their teens are looking at online and foster open communication about what they’re seeing, particularly as it relates to autism. “Ask them, ‘Do you see positive things? What about a negative light? What do you think?’” Dr. Bancroft says. “Teens just want you to be real with them. So, it’s really important to meet a teen where they are and ask them open-ended questions so they have the opportunity to share what they’re seeing and experiencing. Then validate those reactions as much as you can.”
Connecting with a community
“Let them know that a lot of people have autism,” says Dr. Bancroft. “And there’s a community out there.” In fact, learning about this diagnosis at a young age can help children find autistic communities and helpful social skills groups where they feel understood.
If your child with autism is interested in a specific area, it can be helpful to find articles that discuss individuals on the spectrum that are quite successful in life.
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