Experts share their best advice on why, when and how to talk to kids about their autism diagnosis.
Photo: iStock/fizkes
Raelene Dundon will never forget the day she realized it was time to tell her preschool son he was autistic.* When they were visiting her eldest son’s classroom for story time, some of the students noticed that the younger boy seemed similar to their autistic classmate and told Dundon’s eldest that his brother had autism. “I suddenly thought, I don’t want other people to know if he doesn’t know. I need to do something about this,” recalls Dundon, an educational and developmental psychologist who works with children and their families. She knew she’d have to tell her child he has autism.
After getting tips from others who had been through the process, that’s what she did. She went on to share what she learned with the families she was working with, and eventually turned her tips into a book called Talking with Your Child about Their Autism Diagnosis: A Guide for Parents.
“Parents often are quite anxious about how or when to tell their kids, and that sometimes stops them, when it’s actually better to have the conversation as soon as possible,” says Dundon, who is director of Okey Dokey Childhood Therapy in Melbourne, Australia.
While every child and situation is different, Dundon and other experts say there are some universal best practices when disclosing a diagnosis to a child.
Why should I tell my child they have autism?
If you don’t tell your child they have autism, there’s a good chance someone else will let it slip, or your child will eventually figure it out themselves, says Kelly Price, a registered psychologist who assesses children for autism in Victoria, B.C. This is particularly true if your child is participating in programs and receiving services for people with autism because the A-word is bound to come up, he adds. “You don’t want someone else to spill the beans before you’ve had the opportunity to describe it yourself,” he says, adding that it’s unfair for parents to withhold information about their child from them when they reach a certain age, and their child may feel betrayed if they do so.
Dundon adds that kids may feel ashamed if they find out they’re autistic from someone other than their parents because it may seem like their parents were trying to hide it. She says it’s important for kids to know that they’re autistic because it helps them understand who they are, particularly in relation to their peers. “Kids do sense that they’re different, and not helping them see why isn’t okay,” she says. “It causes distress because they can’t fit in, they don’t know why things are difficult for them, they feel like there’s something wrong with them. When they do find out, it’s like, ‘Oh, that explains it. But I’ve had all of these years of thinking that I was somehow less than my peers and that there was something wrong.’”
Isabel Smith, a psychologist, professor and the Joan and Jack Craig Chair in Autism Research at Dalhousie University in Halifax, says many children are actually relieved to hear that there’s an explanation for their differences. “It’s reassuring,” she says. “It normalizes things to have a label for it, and it gives them the knowledge that there are others like them who share similarities,” she says. “It allows them to understand that they aren’t sick or weird or abnormal.”
Janet Arnold, a behaviour consultant who works with children and families in the Greater Toronto Area through her partnership Finding Solutions, says telling autistic children about their diagnosis allows them to learn more about themselves and how to advocate for themselves. “Self-knowledge equals self-acceptance, self-esteem and self-advocacy,” says Arnold, who wrote a book with her professional partner, Francine McLeod, entitled How to Explain a Diagnosis to a Child: An Interactive Resource Guide for Parents and Professionals. “We want children to have a voice, and the only way they really can have a voice is if they understand who they are.”
When should I tell my child they have autism?
When to tell your child they have autism depends on their age, cognitive ability and social awareness, as well as your readiness to have the conversation, says Arnold. “There’s no right age. It depends on the child and the family,” she says, adding that it’s not a one-time conversation but an ongoing process.
In general, though, the experts agree that the earlier you start the dialogue, the better. This doesn’t just ensure the news comes from you; starting early also allows you to tap into younger kids’ accepting nature. “It’s only as kids become older and start to acquire the prejudices of society at large that they see those differences as negative things,” Smith says. “Starting earlier allows you to help break down the stigma and capitalize on this more positive view that we’re all different and we’re all of value.”
Dundon recommends setting the stage for the conversation before the assessment even happens. “You wouldn’t say, ‘We’re going to assess if you’re autistic,’ but you might say, ‘We’re going to see some people to get a bit more of an idea of how your brain works,’” she says. “Then, after the assessment, you can tell them what the results are.”
She adds that having a child receive a diagnosis can be difficult for parents and they need to process their feelings before talking to their kids. “It’s really important that they are in the right head space to talk to their child in a way that’s going to be positive and affirming,” she says. “If they’re going to burst into tears telling their child they’re autistic, then that’s not the time to be telling them.”
If you’re still struggling to start the conversation after a couple of months, consider speaking with a health professional about their feelings. “In most jurisdictions, the parent is the one who’s going to take the lead in doing a lot of the therapy, so they have to get help with it, move on and turn that distress into something more constructive,” says Price.
Smith says many families find it helpful to have a conversation with a health professional, such as the psychologist who did the assessment, to help them figure out how to broach the subject with their kids. Many health professionals will even offer to facilitate that first conversation about the diagnosis with the child and the parents, she says.
The experts also encourage parents to do their research on autism and how to discuss it with their child before having “the talk.” This may include connecting with other parents through support groups; reading information on the websites of reputable autism organizations; reading books for adults and kids about autism, differences and how to discuss a diagnosis; and reading information from the perspectives of autistic people.
If you decide to hold off on telling your child they have autism, Arnold says it’s important to be vigilant in looking for signs that it’s time to bite the bullet. She says such signs include behaviour changes like withdrawing or acting out, negative self-talk, comparing themselves to others and asking questions like, “What’s wrong with me? Why am I different? Why is this so hard for me?”
Some kids will have these thoughts but not express them, so it’s important to check in with other people involved in your child’s care to see if they’ve noticed any changes.
How should I tell my child they have autism?
1) Integrate autism into everyday conversation
If your child is diagnosed young, say as a toddler or preschooler, the experts recommend integrating autism into everyday conversation right from the start. Smith says parents can do this when the child is receiving autism interventions, attending social events for children with autism or watching TV or reading books that feature autistic characters. It’s as simple as saying, “We’re going to the doctor today because you have autism,” or “Julia from Sesame Street is autistic like you.”
“Rather than avoiding the A-word, it’s just a matter of fact in family life,” Smith says. “There often isn’t a need to be direct about telling them because they’ll grow up knowing that word, and that it’s something characteristic of them.”
Some families prefer talking about the differences in how their child thinks and perceives things before introducing the word “autism,” says Dundon, and that’s totally fine. She recommends mentioning differences or autism in the context of a child’s strength and challenges or by highlighting similarities and differences to others. For instance, “Your autistic brain is really sensitive to those noises,” or, “Your brain works a bit differently than your brother’s because you are autistic.”
“The more naturally it’s brought into conversation, the better, because then it just becomes a part of who they are,” she says. “It’s really about helping them see that they have differences, and some challenges associated with those differences, and that’s okay.”
Price recommends using autism to describe some of your child’s behaviours. For instance, “When it’s hard for you to stop playing that game, that’s because of your autism. Sometimes people who have autism have really strong interests.”
2) Set the stage for a positive conversation
Price recommends having the conversation when your kid is calm and happy and things are going well. “I wouldn’t pull out the autism term when they’re having a tantrum,” he says. “You don’t want it to have a negative connotation.” He also suggests keeping it light and casual. “You don’t want the kid to remember that day you sat them down and told them they have autism because that makes it too much of a thing. It makes it seem like it’s bad news for them.”
Arnold suggests thinking about where the great conversations in your family happen—whether it’s around the dinner table, on a long car ride or curled up in bed—and doing it there.
3) Focus on strengths, challenges and differences
Once you’re settled in for the conversation, a simple way to open it is by mentioning the assessment process, Dundon says, adding that you can start with something like, “You know how you did all those special activities? We found out that your brain works a bit differently and that’s called autism.” Consider explaining how autistic and neurotypical brains work differently by using an analogy like Mac and PC computers: “They just do things a little bit differently,” Dundon says. “It doesn’t mean that one is any less than the other.”
Another option is to start by talking about strengths, challenges and differences in general. Smith suggests discussing the things your child is good at and the things they struggle with, and then doing the same thing for other people like siblings and classmates. “You want to help the child understand that everyone has highs and lows in terms of abilities and interests,” she says. This makes it easier to fold autism into the conversation, she says, which you can do by saying something like, “Autism is a word that describes some of the strengths and challenges that you have.”
When you do introduce autism, all of the experts recommend taking an individualized approach by using concrete examples of your child’s strengths and challenges to explain how their brain works, keeping it positive as much as possible. For example, Dundon suggests saying something like, “You know how it’s hard for you to talk to some of the kids at school, or you feel a little bit awkward, or you’re not sure why they do the things they do? It’s because of the way that your brain works, and that means that you follow different social rules and have a different way of communicating than some other kids and that’s called autism.”
Price recommends following up on that approach by explaining what autism is by drawing on the diagnostic criteria. For instance, if you’re talking about a social challenge your child has, he suggests saying something along the lines of, “Autism is difficulties with social communication like eye contact and conversation. Do you think you have difficulties with those things?”
Arnold urges parents to follow their child’s lead, keep it age-appropriate and add information over time. She compares talking to your kid about autism to talking about the birds and the bees. “If a child says, ‘Where do babies come from?’ you’re going to explain different information at different stages depending on your family dynamics and values,” she says. “It’s a process.”
4) Let them know there’s help and community
Once you’ve told your child they have autism, the experts say you should let them know that there’s help for some of their challenges. For instance, if they have difficulties with communication, you can tell them about speech therapy. If they’re sensitive to loud environments, you can offer them headphones.
Smith says parents can also help kids learn more about autism by providing them with kids’ books on the subject, particularly those written by autistic people. For example, Dundon, who is autistic, wrote the Max and Barnaby series of books about an autistic boy who navigates social situations with the help of his pet lizard. Smith recommends parents look for books that feature autistic children with similar skills profiles to their children to ensure they can connect to the story.
She also encourages parents to let their kids know that there’s a thriving community of autistic children out there and lots of opportunities to connect through things like autistic youth groups and social activities. “Receiving a diagnosis gives a child access to a peer group, which is a huge gain if they may not have had much positive peer interaction.”
5) Be ready for your child’s reaction and questions
From relief and indifference, to shock and confusion, to sadness and anger, kids can have a range of emotions when they hear they have autism. “We’ve seen the whole spectrum,” Arnold says.
Negative self-talk like, “This is why no one likes me,” may also bubble up during the conversation. “It’s okay to say, ‘These are big feelings, and it must feel kind of crappy right now,’” Arnold says, adding that parents can try to bring the conversation back to how everyone is different and has unique strengths and challenges, and even mention how there are all sorts of famous and successful people with autism, such as Greta Thunberg.
Be ready for your kids’ questions. Some common ones the experts have heard are “How did I get it?,” “Is it contagious?” and “Will it go away?” Questions like these are an opportunity to explain that they were born with autism, all kids’ brains develop differently and while it won’t go away, they can get help with their challenges.
Arnold adds that it’s okay to not have all the answers. “You can say, ‘I’m not sure, let’s research that together.’ Or, ‘Why don’t you give me a few days, I’m going to get back to you.’”
6) Keep the conversation going
Once you’ve told your child about their diagnosis, keep the conversation going. At first you can do this by asking them how they’re feeling after that first conversation or if they have any questions and then check in every week or two to see how things are going, Arnold suggests.
Both Arnold’s and Dundon’s book include activities you can do with your child to help them better understand themselves and their diagnosis and keep autism in the conversation. For instance, Arnold’s book has a family and friends worksheet, which allows kids to look for similarities and differences in people close to them and consider what makes everyone unique. Arnold says this is a great activity to do with the whole family.
As time goes on, you can look for incidental opportunities to bring up autism. For instance, you can keep an eye out for stories about people with autism in the news and bring them up at the dinner table. “You want to be weaving it into as many conversations as possible and not letting it slip away from their awareness, but not dwelling on it and trying to talk about it every day,” Price says.
*This article uses both person-first and identity-first language as members of the autistic community have different preferences.
FILED UNDER: austism spectrum disorder Autism disabilities health service seo Special needs
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