Talking to Your Child About Their Autism

We were all in the car—my third grader, who has autism, his kindergarten-age brother, and little brother’s friend. My son with autism made one of his frequent comments about a bus that had just driven by, probably something about the number, or noticing some incredibly minute detail that the rest of us all would have overlooked. Little brother sighed, and with a note of exasperation said, “H———, why are you, like, so obsessed with buses all the time??”

 

“Why are you, like, so obsessed with Pokémon??” I countered brattily.

“I know why!” My younger son’s friend piped up helpfully. “It’s because H——— has a disease or something, I can’t remember what it’s called, but isn’t that right? He has some kind of disease and that’s why he likes buses and trains so much?”

I knew that my son’s friend had probably mentioned some quirky thing that H——— did to his family and learned from them about autism. I have no doubt that it was a loving, compassionate conversation meant to help him be a better friend. I hadn’t done my job with my son though! And I didn’t want my son worrying that he was sick!

“H——— does not have a disease,” I scoffed, trying to conceal my mild panic, then, “look at that!” I said, drawing their attention to who knows what, in a desperate ploy to change the subject.

When to Have the Conversation?

When it comes to my son’s therapies, IEPs, medical issues, learning, etc., I have to say, I am pretty on top of it. I research deeply, I execute vigorously, I push for what’s best for him.

But I waited too long to even think about how and when to talk to my son about his own autism diagnosis. Why? The truth is, I was avoiding it, putting it off. This is because I was very scared of doing it wrong, or at the wrong time, and damaging his psyche for life. It always seemed best to just wait. But in waiting, I risked someone else delivering the information to him first, like, say, a kid, who wouldn’t have all the facts straight and definitely wouldn't put the same degree of care into the conversation that I would. The incident in the car was a wakeup call. Okay, it said, time to stop avoiding and address!

I did a little research on when and how to have the conversation and everything I read told me that I was late. And for precisely the reason I had identified. You don’t want your child becoming aware of the situation before you talk to them about it. In that lonely space, they might get false information or come to false, injurious conclusions out of their own natural immaturity.

I’m going to share with you all how I approached the conversation with my son because I think it went really well, but it is just my one experience, and I know that there are probably many great ways to navigate the conversation. Each parent will have to consider their own circumstances and find their own approach. I must also acknowledge, that my son is one kid, and his particular mosaic of autism symptoms are unique to him. People with autism have such widely varying symptoms, gifts, levels of functioning, levels of communication etc. What works with one kid might be totally irrelevant to others.

My son, due in large part to the intensive and incredibly skillful ABA therapy he received at the magnificent Astra Day School in Kansas City (for more information about Astra or ABA, see my post on knowing what good ABA looks like), is verbal, warmly social, and is doing quite well in a typical third grade classroom with minimal supports. Please know that there isn’t a day that goes by that I don’t feel gratitude and a bit of survivor’s guilt for the privileges, and dumb luck that conspired to bring these incredible outcomes about for my son. I am keenly aware and deeply pained by the knowledge that many families, hindered by economic disadvantage, social inequity, lack of support, and/or racial injustice, never experience these amazing outcomes. Others have such severe autism symptoms that even with ideal interventions, functionality is still nowhere near what one hopes for. My heart goes out to parents who might read my words and find them ill-fitting because of the severity of their child’s symptoms. I pray for peace and comfort for you in the midst of your daily struggles, and bless you for the devoted and unimaginable labor ad sacrificial love you put into your child’s life.

How? (a Sample Conversation)

I took my son out, just the two of us. I got him some of the football trading cards he’s currently into and a hot chocolate, and we sat down to look at his cards. My son can be pretty resistant to intense, face-to-face conversations, like many "neuro-typical" sons, (and husbands, come to think of it!), so I wanted us to be doing something really pleasant while we conversed. My son, like many people with autism, has a crazy memory for details! Very soon, he was telling me about the teams, positions, trade histories, etc. of some of the players on the cards. This was where I moved in. 

“H———,” I said, “You have such an incredible memory. I couldn’t remember half of the things you’ve memorized about these players.”

He smiled contentedly.

“Have you ever noticed,” I continued, “that you have a way better memory than just about anyone else you know?”

Shrug.

“I mean, you know all these players and their numbers and teams and positions. You know every bus’s number and the end points of their routes. You know all of the stops on all of the L trains in the whole city! That’s incredible! Most people can’t do that. You are really different and special in that way.”

I let a few minutes pass, and we looked at and talked about his football cards.

“H———, you know how I’m allergic to milk, but you’re not?”

“Yeah. You have to drink Almond milk, but I like cow’s milk.”

“Exactly. I have an allergy that causes me to get a tummy ache when I drink cow’s milk, and it makes me a little different from you and from other people who can drink milk without it bothering them. And you know your friend, N————, who wears glasses?”

“Yes.”

“Well, N————, has something different about his eyes that makes it difficult to see without glasses. You also have something that makes you different in some ways. It’s called autism, and autism is what gives you your super special memory. It also helps you to be really good with numbers and math, and even with reading. There are some ways that autism makes you different in ways that are a bit less fun. Do you remember how much you hated the referee’s whistle when you played basketball? Remember how badly it hurt your ears?”

Nod.

“Autism makes your ears a little different. It causes noises to sound louder and more painful to them. Another thing, is that autism makes your feelings a bit more sensitive. You remember the time your class watched The Adams Family?”

“I hate The Adams Family! It is a stupid movie and we should never watch it!” 

“Yeah, you really hated it and you felt scared and creeped out by it. It made you really upset, and much more upset than the rest of your friends. That is because autism also makes your feelings louder. Scary things feel scarier to you. Sad things feel extra sad for you. But happy, silly things also feel extra happy and silly, and that is why you much prefer happy, silly movies and books.”

We went on a bit longer with a kind of inventory of the ways autism causes differences in H———.

I felt that, during this part of the conversation, I did a good job of presenting the facts, both positive and negative, without too much emotion, and making it clear that autism meant super cool gifts that he was lucky to have and a few things that were harder. I wanted to be honest and not deny the difficulty of some of his symptoms, but without making it even slightly tragic. I also wanted to normalize his differences. We are all different in both fun and hard ways! He’s right there with the rest of us on that one.

Why?

We took another break from the conversation and talked again about some light and fun topics.

Later, in the car, he asked me. “Do you have autism?”

“No,” I said with a palpable ache in my heart.

“Why do I have autism, but you don’t?”

Ooh, tough question, I thought. The answer I gave was informed by my belief in a creator God, who made us and loves us and works everything ultimately to our greatest benefit, so I want to acknowledge that it might not be useful to others who do not share that belief.

“That’s a great question,” I said, “and I don’t completely know. I don’t know why I have an allergy to milk and you don’t. But one thing I do know is that God loves difference. God made the rainbow with all those different colors because he loves to have so many different, beautiful colors! He made people with all different colors of skin because he loves black skin, and brown skin, and pink skin, and white skin, and freckles. He made so many colors of hair, and he gave people all different kinds of talents, and he made some people with milk allergies, and some with eyes that work better with glasses, and some with autism because he loves difference. It’s like a big, beautiful bouquet of flowers to him. He made you in a way that delights him, and it delights me too. I love everything about you.”

Discussing with Peers

“I’m going to tell my friends that I have autism, and I am powerful!!”

I’ll be honest, this sparked fear in me. For obvious reasons, I was nervous about him opening up his autism too much as a topic of discussion with his third-grade peers. I’m not sure that I responded to this in the best way, but I’ll share my response anyway.

“Sweetie, for now, I think it would be best to discuss autism mostly just with your family and with adults you can trust to tell you true things, like your teacher, or Ms. E, your ABA teacher. The reason for that is that kids don’t really know much about autism, and you don’t want them telling you things that are wrong. Someday when you’ve learned all you need to know about it, you’ll definitely be able to talk to anyone you like about autism, but for now, I think it’s best to mainly talk about it with people who know a lot about it. I am always happy to talk with you and answer any questions you might ever have and so is Daddy.”

Advocating/Sticking up for Himself

“One way that you can talk to your friends, though, is if they ever give you a hard time about a way that you are different. For example, if there is a fire drill and the bell is hurting your ears and you have to cover them, or you’re getting upset, and your friends say something like, “H———, what’s the big deal?? Why are you getting so upset about a dumb fire drill??” You could say to them, “my ears are a little different from yours, and noises are much louder for me, and so the fire drill hurts my ears more than it hurts yours. That’s why I’m upset. You’d probably be upset too if you heard the bell as loudly as I do.” 

Keep the Conversation Going!

Keeping the conversation going is crucial so that my child can always feel free to bring me any new thoughts or questions about it. I think kids are experts at detecting the topics that are charged and, at a pretty early age, they start taking the temperature on those topics to see how comfortable we adults are in talking about them. These topics can include sex, their bodies, privacy with their bodies and appropriate touch, relationship dynamics and tensions, religion, gender, their own self-image, and so much more. Keeping a conversation open and ongoing is way easier than closing a conversation with the plan of intentionally reopening it at some future time. 

Personally, I think keeping the conversation going is done best when it’s done kind of subtly, with a parent always looking for opportunities to casually drop in a comment, or acknowledge those topics when they’re present, or even nearby. I take every opportunity, perhaps to a comic degree, of referring to the mechanisms of sexual reproduction because I want my kids to sense that I’m comfortable talking about it and comfortable with them talking about it. If we see a bee on a flower, you better believe that the human process of fertilization is going to get a mention! I want it to be a perfectly normal part of life. 

Going forward with the autism conversation, I am already on the lookout for opportunities to refer to H———‘s differences, or the differences of myself and others in positive, normalizing ways. Things like, “there’s that amazing memory in action again!” or “Grandpa has those things in his ears because his ears are different in that they don’t hear very well anymore. I bet he wishes he could have your ears that hear extra well!” Or ( a real one that just came up) “Learning about this topic in school upsets you, huh? Lots of sad and horrible things have happened to black people in America, and with your extra loud feelings I could see how that could make you extra sad. I wish history were full of only happy things, but unfortunately it isn’t, and it’s really important that we learn about the bad things and the good, so that we can do better. There are still lots of bad things happening and we have to do our best to change them even though it feels upsetting just to think about them. If we let our upset feelings stop us from thinking about bad things that are happening, we won’t be able to do our part to stop them, and then there will be even more bad things. This will take you some time, but I know that you can get great at learning about sad things, just like you got great at ignoring the referee’s whistle in basketball. You can always say to me or your teacher, “This is really sad and learning about it is making me feel sad and upset,” and we will be with you and help you with those feelings while you learn.” It was mostly H——‘s amazing 3^rd-grade teacher who so skillfully navigated this conversation!

How About You?

Have you had this conversation with your child? How did it go? What tips or strategies did you use that worked for you? What mistakes did you make that others might avoid? Parenting is tough work and arguably the most important work in the world. Praise yourself for every act of courage and each brave conversation you have, even if you make mistakes! You can always go back and address those missteps with your child! They are so forgiving!