Ep #40: How to Talk to Your Child About Their Autism Diagnosis

You are listening to episode 40 of The Autism Mom Coach, How to Talk to Your child About Their Autism Diagnosis. Whether you recently received an Autism diagnosis for your child or you have had it for some time, you have surely wondered whether, when and how to share this information with your child. In this week’s episode I am going to give you three tips about how to have this conversation. Stay tuned.

Welcome to The Autism Mom Coach, a podcast for moms who feel overwhelmed, afraid, and sometimes powerless as they raise their child with Autism. My name is Lisa Candera. I’m a certified life coach, lawyer, and most importantly I’m a full-time single mom to a teenage boy with Autism. In this podcast I’ll show you how to transform your relationship with Autism and special needs parenting. You’ll learn how to shift away from being a victim of your circumstances to being the hero of the story you get to write. Let’s get started.

Hello everyone and welcome to another episode of the podcast. For all of you who celebrated thanksgiving, I hope it went well and that you enjoyed yourselves. In this week’s episode I am going to talk about the topic of when and how do you talk to your child about their autism diagnosis. The reason I’m doing this topic now is because I recently presented on this exact issue to a local Autism group, me along with my son actually. It was quite the experience. And I wanted to share the information with this audience.

And of course, if you want to watch the video of my son and I delivering this presentation I am going to attach that to the show notes so you can access it there as well.

Okay, this is a question that I get a lot in my coaching program and I also see a lot of chatter about it online. And that is when do you tell your child that they are Autistic? Do you tell them they are Autistic to explain to them why they have a one-on-one aide? To explain to them why they go into a resource room or to explain to them why they have countless therapies after school? So in response to those questions I put together a short presentation of my tips and really like my two cents on this topic.

Now, as you all know, my son is 15 years old and he was diagnosed at the age of two but he didn’t find out until the age of 11. So when I was putting together my presentation about this topic I asked him for his input. And he sure did have some. And so I invited him to the presentation and he actually spoke a bit to the parents about his perspective. And he was asking them questions and he was giving some advice too. So, again, if you’re interested in checking out the presentation it will be linked to the show notes.

For me the interesting thing in getting my son’s perspective is just to see how things really played out for us because although I had had thoughts about when, and whether, and how to talk to him about his Autism diagnosis for years. I actually never did. I never actually sat him down and said, “Ben, you have a diagnosis and this is what it means.” It all happened very organically.

And so I want to share with you my tips about how to do this, or really my suggestions about how to talk to your child if you ever decide that you’re going to have this conversation. So that you can see how organically it can happen if you use this method.

Okay, first, before you talk to your child about their diagnosis, you need to check in with yourself. You need to be very aware of how you are thinking and how you are feeling about their diagnosis before you have this conversation. This is because how we are thinking and how we are feeling fuel our actions. They are the how behind the what we do. And when we’re thinking about talking to our child about their diagnosis that is an action we are taking.

So I always like to take a step back and check in, what are the thoughts and what are the feelings behind this action. So if you are thinking that the Autism diagnosis is a death sentence or a blight on child’s future, or you are browbeating yourself because you believe that it’s your fault and it’s something that you did, and you are feeling angry, and sad, and scared. This is not the time to talk to your child about their diagnosis. And this is because the discussion that you have with your child about the diagnosis, that might be the first time they are ever hearing the word ‘Autism’.

And this means that you have the opportunity to shape how they understand themselves and how they understand themselves in relationship to this six letter word. The last thing that you want to do is come to this conversation with your anxiety, and your fear, and your sadness and relay that to your child. The last thing you want to do is for them to walk away thinking there’s something wrong with me, I am broken.

That is why it is so important that before you start talking that you take the time to do your own internal work of understanding your thoughts, your conscious and subconscious thoughts about Autism and how you are feeling. And I will tell you that this is 90% of what I do in my one-on-one coaching practice is that I am talking to moms about the thoughts they’re having about their child’s Autism, what it means about their child, what it means about them as parents. We’re uncovering some limiting beliefs they didn’t even realize they have.

And we’re seeing all of the ways that it’s showing up in their emotions, and their actions and how they show up in the world. And you really want this visibility into how it’s impacting you before you have this conversation with your child. Because again, you do not want to relay this message to your child in a way that they internalize it as something bad, or bad news, or an omen for their future.

Second, focus on the message. The word ‘Autism’ will likely mean nothing to your child. They’ve never heard the word before and if they’ve even heard the word before they don’t have the negative associations that you and I may have with the word. They don’t have the history with the word. They don’t have any of the limiting beliefs about Autism or what it means to be Autistic. And this is the best news ever. This means again we have the opportunity to shape their experience of what the word means and what it means to them.

Now, of course we cannot control their thoughts, we cannot control their feelings. We can’t control what happens when they Google ‘Autism’ or they hear it out in the world. But we can begin the conversation with them in a way where we’re not presenting it in the way quite honestly a lot of us claim to understand it. It came to this as a diagnosis, as a disorder. We have the opportunity to flip that for our children and to have the discussion with them being a discussion about themselves overall with Autism interwoven.

So to do this I like to focus on the message. And so I always imagined that one day my son would learn of his Autism. And my thought was, how do I want him to react to that? How do I want him to think and feel about that when he finds out? And really the conclusion that I came to is I didn’t want him to be surprised or taken off guard. I wanted him to learn and know enough about himself that this did not seem like a weird or a bad thing.

So although I did not tell him of his diagnosis when he was two years old, I was always incorporating messages about the diagnosis in our day-to-day lives. And I want to give you some examples of this. And the great thing about this is that when you focus on the message, we’re not talking about the word ‘Autism’ per se, we’re talking about how Autism in its myriad of ways might impact a child’s day-to-day life. Let me give you some examples to make this clear.

When my son was five years old he was really frustrated that he was the only child in his class that had a one-on-one aide. And he wanted to know why and he also wanted to ditch the aide. So I didn’t go ahead and tell him, “You have an aide because you have Autism.” Because number one, that would have meant nothing to him and two, I would have run a real risk of associating Autism with something he didn’t like. and I never wanted that. I never wanted him to have a negative association with the word ‘Autism’.

So instead what I did was I talked to him about how he had a different learning style than the other kids in his class which was definitely true. And I would say, “You know how after you do an assignment you like to take a break, and you like to take a walk, and you like to go say hi to the secretaries in the principal’s office.” And of course he did know that and we were talking about that.

And I said, “That’s the great thing about having an aide is that you get to take a break whenever you want. And that’s really good for your learning style because sometimes brains need a break.” So that’s just a really simple example. Again I’m not saying the word ‘Autism’, but I am introducing the idea that people are different, people have different learning styles and it’s okay.

Another example. My child really struggled with change and transition and in fact he still does. And so even when he was really young, when it was Sunday night into Monday morning, I would always acknowledge this, “Oh yeah, but Sunday, this always happens on Sunday because the change is coming and you don’t like change. And change and transition can be hard. And that’s why we have our schedules and that’s why we have our routines.” But I was always acknowledging it and just bringing attention to this isn’t the first time that this has happened, nor will it be the last.

Reminding him that he has gotten through it before, it’s okay that you can feel upset, but also just calling it out. And now we all know that difficulty with change and transition is very related to Autism. But my son didn’t know that at the time nor was I telling him. Eventually he would come to learn that the two were linked so it was giving him some of the information without sitting him down and saying, “You have a diagnosis.”

Alright, another example. Let’s say your child is rigid about how he plays. And I will never forget how I would laugh whenever my son would be upset that his friends would play wrong. And so when this would happen I would start incorporating some of the characters from his social skills class into our conversation. So at some point he started doing social skills class that had, it was like rock brain and super flex. And so rock brain as you would imagine was very rigid and he only liked to do things a certain way. And super flex was flexible.

And so I would start saying things like, “Well, it looks like Mr. Rock Brain only wants you to do things one way. What would Mr. Super Flex do?” And start having the conversations around that. And then incorporating that into other areas of our lives like when I was having rock brain about something which happened from time-to-time and he would point it out. And so we’re always having this conversation about how our brains can work differently from time-to time, again not telling him, “You have Autism and people with Autism are sometimes rigid.” But giving him language to later understand it.

Another example where you can do this messaging is whenever you see all or nothing thinking. For my son this showed up about his preferences, whether it was toys, TV shows or even friends. When he was playing with one friend, or one toy, or watching one particular show, that was his favorite. And he didn’t like the other ones. So if he was playing with Jason he didn’t like Johnny anymore. If he was playing with LEGOs, he no longer liked Star Wars and on and on.

And so I was always having the conversation with him, “You can like more than one thing at once. It’s not either or, it’s both and.” And as he got older I would say, “This is an example of super flex and being flexible.” And this was all for the purpose of bringing attention to some of the ways that he was thinking and pointing them out and having a conversation. And later these conversations would translate into his understanding and identification between his behaviors and what it meant to be.

And later this would translate into his connection between his own behaviors and his own experiences and the word ‘Autism’. I’m going to give you some more examples of how I laid the foundation for the Autism talk that I never actually had and I’ll get to that in a moment. So I would talk to my son about how his brain worked differently than mine. For example, I would always point out to him how amazing his memory was at remembering details, I mean really vivid details about events. And my brain just doesn’t work that way.

He would get really frustrated with me because he would say something like, “Mom, do you remember the time where we went to the store after school?” And I would be a blank stare. And he would give me more details and more details and still I did not know what he was talking about. And he would get really frustrated. And so I would start to say, “Ben, you have an amazing memory. My memory doesn’t work that way. This is just really cool that you can remember things the way that you do because I can’t.”

Or let’s just say that we would be watching a show and he would pick out the smallest of inconsistencies and point it out to me. And of course, once you see it you can’t unsee it. But I was just always so impressed by how he could pick up things obviously the directors missed. And I would point this out, I was like, “Wow, your brain is so laser sharp in picking out details. Maybe this is why you’re so good at math, or you love LEGO so much.”

And just one more final example. When my son came home from elementary school one time, he announced to me that the elementary school was a hypocrite. And when I asked him why, he said, “Well, mom, they say that they value health and good nutrition but they’re liars because the cafeteria food is all junk.” Now, of course, I found this hilarious and spot on. Not that they were hypocrites but yes, there is an inconsistency between saying that we promote health, and healthy food, and having cafeteria food, that’s chips and cookies.

So while I was trying to talk my son down about the school I also pointed out to him how this was just another example of how laser focused his brain is on details and how he’s probably the only child in the school to make this connection. And of course, in each of these examples I was trying to say whatever I could to foster as much self-esteem and self-concept in my son as possible. Again not that we can create this for our children but we can certainly encourage it.

And so wherever you can, look at your child’s differences or the things that make them unique and find a way of telling them that they’re extraordinary because they are, I think the better. Anyhow, the upshot of all of these conversations over the years is that when my son learned he had Autism, or rather, when he learned that there was this umbrella term to capture some of the things that he already knew about himself. Well, he wasn’t surprised or upset. In fact because of these ongoing conversations he basically figured it out himself.

We were watching the show Atypical on Netflix and my son noticed that Sam was really rigid. And Sam had black and white thinking. And Sam hated change and transition. And by the end of episode one my son turned to me and asked me, “Am I Autistic?” And I said, “Yes, you are.” Not at all, I expected that conversation to unfold but there you have it, he figured it out himself. And it wasn’t a bad thing. It was just like, huh, I’m like that guy. They’re saying he has Autism, I guess I have Autism too, and that was that.

So focus on the message you want to deliver to your child about their uniqueness, about their struggles, about the things that might set them apart from their peers. You can do this long before you even mention the word ‘Autism’. And you can do it on your own time. You can do it in a way that makes the most sense for you and is the most supportive of your child and their self-concept.

Tip number three. Be cool. This talk may involve a lot of anticipation, expectations, and anxiety for you and that’s totally understandable. But after you deliver the message give your child some time to process the information. And of course all kids are indifferent. Some might have a lot of questions right away like my son, like, “What did you know and when did you know it, and what did you do?” He had a lot of questions. But some kids might not have any questions when they find out or maybe even ever.

Follow their lead on this one. Let go of your expectations or your anxiety to overexplain what Autism is and stick to the basic message that you want to deliver. At some point like with my son, maybe your child Googles ‘Autism’, or they run into it in a conversation out in the world. And if they do and or when they do, just let them know that they can always come to you with questions. Now, when this happened to my son, he Googled ‘Autism’ as part of a school project that he wanted to do where he explained what it was.

He was really annoyed that the diagnosis included the word ‘disorder’. And he wanted to know why it was a disorder since everybody is different. And honestly, I was really proud of him and I agree, why disorder, why not just different? While I didn’t have a great answer for him as to why it’s called a disorder I was glad that he was not really pleased with society’s definition of Autism. And really I don’t want him to internalize Autism as something wrong with him, as a bad thing.

And so always wanting to have the conversation with him about how he feels about the term, how he feels about identifying as Autistic. And for my son, he identifies as Autistic pretty openly. This won’t be everyone and that is okay. Again, take your child’s lead.

Alright, if you want to watch the presentation that my son and I did on this topic, I will leave the link to the video in the show notes. And before I go I want to remind you that if you are enjoying this podcast, if it brings you value, please take the time to rate and review it. I am giving away holiday gifts to every listener who rates and reviews the podcast in December. So once you rate and review the podcast, shoot me an email with a snapshot of your review at lisa@attheautismmomcoach.com along with your address and you will receive a holiday gift from me.

I am doing this because reviews are really important in terms of how visible my podcast is to other moms, how easy it is for the mom crying in her car to find this podcast when she needs it and that’s what I want. So, again if you have not already, please rate and review it and claim your prize. Alright, that is it for this week. I will talk to you next week.

Thanks for listening to The Autism Mom Coach. If you want more information or the show notes and resources from the podcast, visit theautismmomcoach.com. See you next week.