If your child has received an autism diagnosis, eventually you’ll need to share that with them. Otherwise, they’ll miss out on important information about both their challenges and strengths, and how they experience the world differently than their peers. And the sooner you tell them, the better, according to a new study.
For the study, researchers surveyed 78 autistic college students about their experiences with being told they’re autistic. They found that the students who were told they’re autistic at a younger age had a higher quality of life and well-being as adults.
“The more that parents wait longer to tell their children, the more that the children will question their own identity and why they went through their own life experiences,” says study co-author Bella Kofner, who recently earned her master’s degree in special education (grades 7 to 12) from CUNY College of Staten Island and who is autistic herself.
“It's really important for children to be told about their autism early on and in a language that allows them to understand, so that they can have the time to grow as individuals but also reflect on their own life experiences,” she says.
For instance, telling a child they’re autistic may help them understand why they love swimming at the pool in their backyard or at a neighbor’s house but become painfully overwhelmed by all of the sounds, smells, and people when they take swimming lessons at the local YMCA. Knowing about their diagnosis can help some autistic children understand why they have delayed speech or are nonspeaking, why they hate making eye contact even though their siblings don’t mind doing so, or why they struggle with changes to their routine. Having that understanding could be why they grow into adults who have a higher quality of life.
What Autistic Kids Think About Autism
Before starting the study, the researchers hypothesized that students who learned about their autism at a young age would have more positive views of autism than those who had learned when they were older. But their results showed something more complicated.
“We actually found evidence kind of in the opposite direction,” says Kristen Gillespie-Lynch. Ph.D., is an associate professor of psychology at CUNY’s Graduate Center and the College of Staten Island. “People who learned later viewed autism more positively when they first learned they were autistic.”
For instance, one student who had learned they were autistic at age 9 responded they initially “did not feel anything” about autism. As an adult, that student’s neutral feelings about autism persisted.
However, a student who learned of their autism at age 13 responded that they first “cried as I had finally found out why I was different and it was both relief and sadness,” a response that researchers coded as both positive and negative. As an adult, that same participant stated that they “feel comfortable now, based on the support I got. … I have been able to understand the symptoms, put strategies in place and build myself up in confidence.”
People who learned of their autism at an older age have more positive views of autism while also having lower levels of mental well-being in adulthood because they could still be struggling with some of the challenging symptoms that led to their diagnosis, says Steven Kapp, Ph.D., a psychology lecturer at the University of Portsmouth in England who is autistic himself. But because they were struggling with symptoms without an explanation for longer, finally getting that explanation could have offered a greater sense of relief.
Kapp, who learned he was autistic immediately after he was diagnosed at age 13, says, “My mother said I was wired differently, and I think it helped to have a neurological explanation for something where my father and closest grandparent would sometimes say I wasn’t trying hard enough.”
Starting the Conversation(s) About Autism
Like many other topics you talk about with your child, you’ll likely need to have more than one conversation with them about their autism diagnosis, including about how their neurodivergence is a part of both their strengths and the challenges they experience.
When the researchers asked survey respondents about when parents should share the diagnosis with their kids, the participants didn’t recommend a specific age, Gillespie-Lynch says. “Some people were just like, ‘Tell them as soon as possible,’” she notes.
Other participants discussed the importance of factoring in the child’s developmental level before telling them everything an autism diagnosis brings.
“It’s not like an all-or-none thing where you just say everything all at once. You can say aspects of it, so peoples’ understanding develops over time,” Gillespie-Lynch adds. For example, maybe your 4-year-old can handle hearing that their autism probably has something to do with their obsession with tigers and why they’re going to speech therapy. But that same child may not be ready to hear how they’re different from many of their peers and that they may need certain accommodations when they start school.
Before telling your child about their autism, Kapp recommends preparing yourself with resources such as Welcome to the Autistic Community, a book free for download, and this welcome packet for parents from the Autistic Women and Nonbinary Network.
Understand that your child may have a range of emotions in reaction to finding out that they’re autistic, and their feelings may differ significantly from your own. You may feel relieved to understand more about your child’s neurodivergence, while they may feel confused, upset, or apathetic about their autism. Alternatively, you might feel worried about some of the challenges they may face, while your child may feel happy to know more about this aspect of their identity.
Be open to how your child may react, and make space for them to have their own feelings. “Let them know you’re going to be there for them and that it’s okay for the child to ask questions,” Kofner says. Let them know that the offer doesn’t come with an expiration date because they may have new questions and different feelings over time.
Also, be choosy about where you decide to tell your child they’re autistic. “You want to have an environment where the child feels comfortable” rather than attacked or overloaded, Kofner says. For instance, talking to the child one-on-one at home when they’re swinging on their favorite swing or surrounded by their favorite action figures may work well. Telling them when they’re hungry and in a loud, crowded restaurant may not.
For some children, discussing examples in the media of autistic characters may be helpful, Kofner says. One example is Julia, an autistic Sesame Street Muppet. Just keep in mind that media depictions of autistic characters are imperfect and often controversial in the autism community. (Julia is no exception.) And seek out real-life role models of autistic adults to tell your child about, such those included on this list of autistic researchers or people in your own community.
Remember: There isn’t a one-size-fits-all way to tell your child about their autism. Since you know them best, you can tailor your conversation to fit their current developmental stage while also telling them about they’re autism early on. If you’re struggling to find the right words, consider seeking support from a therapist before talking with your child.
The first conversation you have with your child about autism likely won’t be the last. So give them enough information to understand their diagnosis without completely overwhelming them by telling them more than they can digest.