Last week I had the privilege of speaking to a room full of parents of autistic kiddos who wanted advice on how to talk to their kids about their autism diagnoses. I’d like to thank Partnership for Extraordinary Minds for hosting me and for the parents who came with their kids’ best interests in their hearts and excellent questions on their minds. I thought I’d publish my thoughts here because, hell, I already wrote them out, and also maybe they’ll help someone.
I co-presented with a lovely woman who spoke a lot about how kids need to know about their diagnoses to participate in their IEPs and transition plans and in their future when they need job and post secondary school accommodations. She made some excellent points. She spoke without any notes. I had fifteen pages typed out. Some of us were less experienced than others. (Read: me.)
I’d like to thank all of you who emailed and commented when I asked you for your stories. I couldn’t quote everyone in my talk, but I carefully read what each of you had to say and it all informed my talk. You are wonderful. Thank you.
Most of what I said is below (annotated after the fact by me).
I’m really excited to be here today to talk about this. I want to talk to you a little bit about not just how to talk to your kids about their diagnoses, but why you should, but I’ll start by telling you a little bit about me. I live in Montgomery County with my husband and three kids, all of whom have diagnoses of autism, ADHD, or both. Two of them are autistic. I am also autistic. My husband is the sole neurotypical member of my family, which leaves him in charge of everything in my house that requires executive functioning skills. [Alex didn’t think this joke was as funny as I did, but it got a laugh, so take that, Alex.]
I told my kids that I was coming here tonight to talk to you and they all gave me their permission to talk to you about them and their diagnoses, so I’d like to thank them for that. [They also gave me permission to publish my talk here so, again, thank you to them.]
My oldest son, Sam, is 14 years old and has an ADHD diagnosis. Jack is 12 and autistic. He was diagnosed shortly before he turned five. My ten-year-old, Quinn, was just diagnosed as autistic a few months ago. I was diagnosed with Aspergers, about four years ago, back when you still could be diagnosed that way. I spent 38 years being autistic but not knowing I was autistic. That has had a profound effect on me. I now identify as autistic.
So, I have experience with telling a child about his diagnosis when he was pretty young, telling one who was a little older, and dealing with this discovery myself, so hopefully what I have to say will be of value to you. And, as a side note, my family prefers the identity-first use of the term “autistic,” which is why you hear me say that a lot instead of person with autism. [I hate it when people correct me and tell me I need to use person first language, so I like to beat them to the punch by announcing my intentional use of “autistic.”]
I hear from a lot of people that say they don’t talk about their kids’ diagnoses with them but intend to do so sometime in the future when they think the information will be beneficial to the child or when they’ll need to know it.
I’d like to suggest to you that it is always beneficial to have that kind of self-knowledge and they may need to know it way before you think they do. Chances are that your child already knows something is up. Even when they’re very young, they know if they’re different. Or they are aware that they have a paraeducator at their desk but no one else does. Or that they go to OT and speech therapy and social skills group.
Or what about when your child knows he hates to be touched or hugged, but doesn’t know why, just that he disappoints the people he loves when he shies away from them. That was me. I had—and continue to have—a really big problem with touch and hugs from certain people at certain times. Until I understood why, I thought I was wrong. I thought I was a bad person for not wanting to hug my mom—and this is all the way until after graduate school. All I knew was that they felt bad about it and that made me feel bad about it. [This isn’t to make my mom feel bad—it is just for illustrative purposes. And I very much know she meant no harm. Much love to you, Mom.]
Once I knew about my autism and could understand why I felt the way I do, I knew that my brain was processing things differently and that it was okay to feel that way. It was a life-changing perception shift in so many ways.
When you tell a kid who feels alienated that there is a reason he feels apart and you let him know it’s OKAY to feel that way, it can make a world of difference.
Giving his way of being a name also gives him community. He might not know that there are other people like him in the world. He might think he is the only one. I told my 10-year-old yesterday that more than one percent of people are autistic. You should have seen his face. These kids aren’t alone and they should know that. [Seriously. It was super cool. Quinn had no idea he know so many autistic people. He thought that was cool.]
One common concern I hear from parents is that they worry that once their kids know they are autistic, they will use it as an excuse for why they can’t do things. My answer is that they might.
But kids use lots of things as excuses to get out of what they don’t want to do. The question is if you let them get away with it. These moments are opportunities to expand their understanding of autism—or maybe for you to expand your understanding of your child.
First, you have to check to make sure the excuse isn’t valid. Like maybe she really can’t take a test in that room because she’s autistic and the lights in there bother her. Or maybe he can’t perform in the school concert because the sounds are too overstimulating. Maybe the excuse is a reasonable plea for an accommodation.
But sometimes it really is just an excuse. These are kids after all and kids are creative and smart and can figure out how to manipulate you. [Alelx didn’t think it was a good idea for me to say what I really wanted to, which was, “Kids are jerks,” so I went with “creative and smart and manipulative.”] The few times one of my kids has said as an excuse, “I can’t do that because I’m autistic,” I call them on it. If they say their math homework is too hard for them because they’re autistic, you can sit down with them and show them that they can do it and that their particular neurology doesn’t prevent them from doing math. I think you can treat it like any other excuse—evaluate it for accuracy and then handle it as the situation calls for.
Some people don’t want to label their kids because of the stigma. Unfortunately there is stigma to developmental disabilities like autism. But the word itself—and the child’s self-knowledge—doesn’t cause stigma. If anything, it can give the child a shield when they understand that people who judge them because they are different are wrong. Especially if they know they have a community that backs them up.
Along the lines of stigma, the question of who to share the diagnosis with other than your immediate family is a very important conversation to have, but I think it is separate from this one. I live openly as an autistic person, but there are some situations where I don’t disclose my diagnosis. Regardless of whether you tell schools, employers, and extended family, you should tell your child.
Which brings me to what I think is the most important reason you should tell your child about their diagnoses: It is your child’s right to know. Her diagnosis isn’t your information—it’s hers. These kids have the right to know why they feel and act and do the things they do. They have the right to their information about their brains and bodies.
I’ve reads a lot of things from autistic people and on this subject, they virtually all agree that knowing they are autistic is essential. No one wishes their parents had kept the information from them. Once they learned about their diagnoses, they talk about finally understanding themselves and how they no longer had to see themselves as wrong and broken.
I have included on your handout a link to a blog post called “You should tell your kids that they’re autistic,” written by an autistic adult. If you are struggling with this, I highly recommend you read it, but I also highly recommend you read the comments on the post, many of which are by these same autistic adults. [Really. It’s a brilliant post.]
As someone who spent 38 years without knowing about her autism, I can tell you that the self-knowledge makes a huge difference. I used to spend a lot of time blaming myself for being intolerant of sensory input or thinking I was stupid because I didn’t understand certain things or that I was lazy because I couldn’t organize myself to keep my house clean. I thought I was just uptight and weird and wrong. Once I understood, I was able to understand these things and deal with them. For example, I still have sensory sensitivities, but I know how to avoid that kind of input or I can just cope better. Knowing about my diagnosis has led me to discover things about myself that I never would have otherwise and I am a far happier person because of it.
So if you’re all convinced that you should tell your child about their diagnosis, how do you do it? It can feel like a monumental moment when you tell your kid, but it doesn’t have to be. A lot of it depends on your child’s age and style of communication.
If you’re sitting on the couch together, you can say, “Hey, I’ve been wanting to tell you something,” or on the way to social skills, ask her, “Hey, do you know why you go to social skills group?” [Evidently all of my sentences start with, “Hey!”]
My go-to explanation for introducing the subject is this: Everyone has things that are easier for them and things that are harder for them. Everybody’s brain works differently. The way your brain works has a name and that name is autism. You’re autistic.
That is exactly what I did with Jack. He was nearly five when he was diagnosed and I told him pretty quickly afterward. I like to talk about stuff like this in the car because there is no forced eye contact and they’re kind of a captive audience.
I actually told Jack in the car with his brothers, which may not be best for everyone but was for us. I was able to talk about different ways each of our brains worked and then said, “but the way Jack’s brain works has a name.”
This helped when his brother got an ADHD diagnosis because suddenly we had two neurologies that had names. [I think i might have made happy jazz hands when I said this. I’m a born public speaker.]
Your first conversation can be as short as that: “All brains work differently and the way yours works is called autism.” If your child seems interested or wants to talk more, you can, but they might need to just process that first little bit for a while.
Some people think their kids won’t understand either because they’re young or because of where they are on the spectrum. I suggest that they probably understand more than many people give them credit for. Offering a simple explanation but keeping it age- and developmentally appropriate is worthwhile.
And something else: They might already know. For example, if your child is a little older, maybe they have read about an autistic character in a book and identified with him, but just haven’t told you. My oldest son read Percy Jackson and identified pretty quickly with the main character, who has ADHD. If they’re younger, they might not have the word “autism” yet, but they might already know that they are different in a fundamental way.
I think that one of the most important things to remember when talking to your kids about their diagnosis is to remove any negativity you might feel about their autism. You may not be happy about your child being autistic. But don’t let your child see that because they will likely see it as you not being happy with them.
With my kids, I try to present it not as a negative or a positive—just a neutral. This is the way your brain works. It’s not good or bad, it just is.
That said, just last night I was talking to Quinn about his diagnosis and said, “One of the reasons we brought you to your therapist was to get his expertise to figure out how your brain works. Turns out it’s awesome!” When in doubt, go positive.
It can also be a good idea to let your kids know that all autistic people aren’t the same. They might be confused if they know an autistic person who is really different than them, but has the same word assigned to them.
Know that your child may not react well at first. That’s okay. Let them have their feelings. Listen to them. Stop talking if they need you to. You don’t have to get everything out in one conversation.
My 10-year-old got an IEP prior to his diagnosis. When I told him about the IEP, he was really upset. He thought it would change things for him at school and he was really mad. I tried to address each of his concerns and didn’t push the subject with him. He is at peace with it now, but wasn’t initially. It might take time.
Kids also don’t always hear exactly what it is that you mean—they interpret your words in their own way. Be direct and use simple language. A few months ago, when we started taking Quinn to a psychologist for a number of reasons, including diagnosis, we talked to him about those reasons several times. One day he got really upset and yelled, “You and [the therapist] are trying to change me!” It isn’t what either the therapist or I wanted to do, we had never said that, and in fact we had said the opposite, but that was what he had heard. It can be a good idea to check in with your kids to make sure they’re hearing the message you’re trying to send.
Once he got his diagnosis, Quinn was pretty okay with it, although he’s been a little more cautious with it than Jack has. Jack is all about autistic pride and fully owns his diagnosis.
Quinn had a bumpier transition. When we had him evaluated, we told him that we were trying to get a better idea of how his brain worked so that we can figure out some ways to make things that are hard for him easier.
Once he was diagnosed and we told him, he didn’t really want to talk about it, but since that time, his self-awareness has been amazing. He has learned to advocate for himself and use tools like noise-canceling headphones and fidgets at school. He knows to ask for breaks. He looks ahead at things he thinks might be hard for him and thinks about solutions. It has been amazing to watch. I don’t think he would have made this progress without knowing about his diagnosis. [Quinn’s pretty awesome at being autistic. He’s rocking it.]
I wanted to come here tonight with some other points of view as well, so I asked some parents how they told their kids about their diagnoses. I got some great answers, all of which were positive, which is obviously not every experience. Here are some of the things they said about why and how they told their kids:
“My husband and I never doubted that we should tell him; I’d certainly want to know if there were an explanation for my biggest struggles in life and a community of people out there who shared my interests and characteristics.”
Before emailing me, one mom asked her daughter “if she was glad she knew she had autism, or if she’d rather she didn’t know anything about it, and she said she’s glad she knows, she’d hate to be living a lie.”
Another said, “My kids were diagnosed at 2 and 3. I laid the groundwork throughout their younger years in the way we’d talk about neurodiversity, about the way bodies and brains work, it was just always there in the background and in the words I chose to use with them. Then when we got to the diagnosis conversation (I think they were about 7 and 9), it was really just about putting a word to concepts that were already very familiar to them.”
I LOVE this next one. “Once we had gotten the final word, we sat him down, very casually, and told him that the doctor had “found out that his brain works in some really amazing ways” and that he might find some things difficult, but that mostly, he will find that he is a really incredible person, and that lots of people have brains like his, and that he is exactly the son we have always wanted.” [I kind of want every parent to say that last thing to their autistic kids. Perfect.]
One mom talked about being a non-autistic person talking about autism to her autistic daughter: “The way I’ve come to terms with the issue, now that my daughter is old enough to ask her own questions about autism, is to embrace my ignorance. I’ve become comfortable with admitting to my daughter that I don’t have the answers to her questions myself, but that I would gladly help her search for them. She is the explorer; I am the Sherpa.”
I also think it is important to continue the conversation about your kids’ diagnoses with them. Follow their lead if they have questions and don’t force them to talk about it if they don’t want to, but also don’t mention it once and then never talk about it again.
I do that by noticing when I see one of my kids struggling with something because of their autism or ADHD, I’ll tell them that is why. Or if they are doing great at something that stems from their disability, I will tell them that. Like, I’ll say, “Lots of autistic people have great memories. Your being autistic is probably what’s helping you memorize the periodic table so quickly.” [Jack seems to be doing this. It’s kinda freaking me out.] Or I’ll say “You get upset when you hear that noise because you’re autistic and sensitive to noises.” Sometimes I’ll ask them questions, like, “Do you know why you repeat those words over and over? It’s because you’re autistic. Lots of autistic people do that.”
Doing this keeps the conversation open and lets you keep checking in to make sure the message you want to send is getting across. It also opens the door for their questions. You can teach them that autism doesn’t go away and that there are ways to find its gifts and cope with its challenges.
The end! I think I mumbled something to close up my remarks and I had a bunch more to say in response to questions, but this is sorta my basic message. I also had a handout that had some suggested reading including the adolescent version of ASAN’s Welcome to the Autistic Community as well as a couple of posts I wrote a while ago about my diagnosis (I would not have given it that title if I wrote it today) and about Jack knowing he was autistic when he was young.
Hopefully if you’re working through this issue, this will give you some ideas on how to approach the topic.