Should We Tell Our Kid About Their Autism Diagnosis?

Dear GEP,

We just got our 8-year-old assessed by a psychologist and he was diagnosed with autism. We are trying to be positive but are pretty overwhelmed. We’ve talked to the school about it, but we haven’t talked to him yet. Should we tell him about the diagnosis? Should we wait until it comes up? We’re worried about how he will feel about it, and if telling him will make it a bigger thing than it is.

Because I know from working with Autistic children and their families for many years that this is a process, I’m going to talk first to the part of you that may not have come to terms yet with your child’s Autism. Autistic writers, scholars, and advocates like Quincy Hansen, Tiffany Hammond, Jac den Houting, Matt Lowry, in addition to the many tremendous Autistic children I have known, have taught me a great deal about what it means to be Autistic. As a result, I don’t happen to believe that Autism is a disorder, but that being Autistic is just another way of being, not better or worse than being non-Autistic. But most parents have not had this privilege, and a few things happen when they first receive any diagnosis related to their child. One, they are disoriented — this was not part of the plan, after all! And they are afraid. Will I be able to support my child, knowing more about their needs? Will others love and accept my child for who they are? Will my child love and accept themselves? How much time and money will it take to navigate having an Autistic child?

These are real, difficult questions to grapple with, and parents need time and care to work through them (and may continue in some ways to work through them all their lives). I suggest you ask someone you love and trust to screen some online groups of parents of Autistic kids for you. Let them wade through the toxic sh*t or the stuff you’re not ready for, and get to the good TikTok threads and Facebook groups of what we in the biz call “neurodiversity-affirming” content. When you’re ready for more, the group Reframing Autism has a free, self-guided course to give parents and others accurate information about Autism and to try to counter all that fear.

If you take the word of countless Autistic people, being Autistic is not a source of shame or difficulty and the challenges of being Autistic are really just about being Autistic in a society that values being non-Autistic.

I understand your reservations about telling your child he’s Autistic, though I fully believe you should and that you’ll be grateful you did sooner rather than later. It might feel a bit like Schrodinger’s Cat. If no one knows your child is Autistic, are they really Autistic? Maybe your fear is telling you that you should cling to the version of reality you lived in before you knew your child was Autistic, as if that would be better; as if that were even possible. But I believe neither is true, and that the better world is the one where people understand your kid, and where they understand themselves. And, the truth of it is, your child was Autistic before their diagnosis, and they are Autistic now. Even if you don’t open the box, there is still an Autistic child in there, with a whole lot of potential, waiting to get out.

If you believe, as some people do, maybe even some of the professionals you’ve interacted with, that Autism is bad, well then, of course it would be something scary to tell your child. But if you take the word of countless Autistic people, being Autistic is not a source of shame or difficulty and the challenges of being Autistic are really just about being Autistic in a society that values being non-Autistic. After you know that, it’s hard to continue to think it’s a bad thing.

Take Autistic mental health professional Matt Lowry, for example, who works with Autistic children and adolescents. He created a strengths-based version of the criteria for Autism, that describes Autism as, among other things, a tendency to be passionate about special interests and a disinterest in small talk. If that’s what Autism is, helping your child understand how they possessed those traits would be a gift! It would be like telling your child they were left-handed, or that they were an extrovert, or a six on the Enneagram. It’s almost like you’d be helping them understand not some negative ailment they are suffering from but their own identity. And actually, that’s how lots of Autistic folks think about Autism — as a part of their identity, something they would never wish away, and that trying to suppress has only brought pain. That’s why, in this piece, I’ve been capitalizing the words Autistic and Autism.

But what about other people, you might be thinking? It’s good for my child to know who they are, but what will happen when teachers and other children and my judgmental sister-in-law know they’re Autistic? An important lesson to keep in mind about children is that they are incredibly perceptive. When they don’t read as well as their peers, they know. When they are more sensitive to loud noises? They know. When they are more squirrelly: THEY. KNOW. And when children have the suspicion that these things are a problem, their natural inclination is to blame themselves.

Most likely, other kids know all about your child’s struggles, and giving them language and a framework for understanding them will lead to more inclusion and connection, not less.

I cannot tell you how many children and teens I know whose self-confidence rises once they get a diagnosis. “I thought I was dumb,” they say, “but it turned out I just had trouble sounding out words and my teachers didn’t know the best way to teach me.” Or “I thought I was a bad kid, but it’s just that my ADHD means I need to move around a lot and people didn’t get that.”

Kids follow this line of thinking about other people, too: You wouldn’t believe the capacity children have for shifting from, “That kid is rude, he always covers his ears” to “Max is Autistic, he just needs it to be quieter, guys!” Most likely, other kids know all about your child’s struggles, and giving them a framework for understanding them and being able to talk about them will lead to more inclusion and connection, not less. Adults tend to work like this, too. Many a teacher I’ve worked with goes from overwhelmed and suspicious to committed and creative once they get a clear diagnosis for a student they’ve been struggling with.

The Autistic Self-Advocacy Network, a nonprofit run by and for Autistic people, also suggests that kids have a say in whom you disclose their diagnosis to. “Choosing when to share that we are Autistic is another form of self-advocacy,” they write in a free guide for parents of Autistic kids.

It may be hard to do this at this moment, but think about your long-term goals for your child. If being neurotypical — having a mind that fits the narrow norm of how our society thinks a mind should be — was one of them, it is now off the table (and really, not all it’s cracked up to be anyway)! If you want your child to love and accept themselves, and to be able to ask for what they need and self-advocate, it all starts with self-awareness.

Now, how do you go about telling your child they are Autistic? That would be its own separate article, but this video from my colleague and the links above are good places to start. Ideally, whoever diagnosed them will support you in this, but thinking about Autism as an identity will be a good place to start. Find a nice snack or treat, a quiet moment. Maybe ask them what they know about Autism and — this is the trick — really listen to what they say. Maybe you tell them something like, “Well, I know that all Autistic people are a little different, but Autism can mean [insert some strengths-based traits from Lowry or others]. And guess what, you’re Autistic.” You can dive deeper into examples of famous Autistic people or Autistic people you know (see, there’s the benefit of sharing a diagnosis again!). You can answer questions or leave it at that for the moment and enjoy a hot cocoa with your Autistic child. If your child is non-speaking or cognitively impaired, don’t discount their ability and right to understand their disability, too. Together you can read a picture book or watch an Autistic character in film, like in the great Pixar short Loop, and see what develops. Just remember that you’re both doing great.