403. Q&A: When and how should I tell my child about his autism diagnosis?

​​Dr. Sarah Bren (00:02):

Ever wonder what psychologists moms talk about when we get together, whether we’re consulting one another about a challenging case or one of our own kids, or just leaning on each other when parenting feels hard, because trust me, even when we do this for a living, it’s still hard. Joining me each week in these special Thursday shows are two of my closest friends, both moms, both psychologists, they’re the people I call when I need a sounding board. These are our unfiltered answers to your parenting questions. We’re letting you in on the conversations the three of us usually have behind closed doors. This is Securely Attached: Beyond the Sessions.

(00:43):

Hello, welcome back to the Securely Attached Podcast. I am Dr. Sarah Bren. I have Dr. Rebecca Hershberg here today. Hello, Rebecca.

Dr. Rebecca Hershberg (00:53):

Hello.

Dr. Sarah Bren (00:56):

Okay. So April, as you know, Rebecca, April is Autism Acceptance Month. And so in honor of that, we wanted to answer a question from someone who…

Dr. Rebecca Hershberg (01:05):

Did they change it from acceptance from awareness to acception?

Dr. Sarah Bren (01:08):

Yes. Yes. In fact…

Dr. Rebecca Hershberg (01:09):

They should do that with everything.

Dr. Sarah Bren (01:11):

I know. I like it so much better. So fun fact, April used to be called Autism Awareness Month.

Dr. Rebecca Hershberg (01:16):

Right. That’s what I thought it still was. I’m so outdated.

Dr. Sarah Bren (01:19):

I was recently made aware that it is now the preferred sort of title as Autism Acceptance Month.

Dr. Rebecca Hershberg (01:25):

Yeah. Although my weird brain that has to make a problem out of everything goes to a place of like, what would it look like not to accept autism?That’s not even a thing. It’s like not accept … You know what I mean? I think it’s possible not to be aware of autism. I don’t know that it’s possible not to accept autism. Autism exists.

Dr. Sarah Bren (01:46):

My understanding is awareness is about recognition that it is a thing and that in moving it towards from acceptance- From awareness to acceptance. And moving it from awareness to acceptance. It’s like going beyond recognition and more about dismantling systemic barriers and accommodating neurodiversity in real life in a more just kind of mass accepted way.

Dr. Rebecca Hershberg (02:15):

Okay. I think that’s great. I’m all in favor. I get a little bit hesitant when things that exist and are real start to be talked about as if we have a choice of to whether to accept them, like climate change. Do you know what I mean? So I get the sentiment and I’m 100% on board. And also whether or not someone chooses to accept autism doesn’t mean it exists or doesn’t exist. Autism exists and I’m delighted to make society as accepting and welcoming as possible of everyone. So anyway, onward.

Dr. Sarah Bren (02:47):

I love it. Onward. Onward into April, our Autism Acceptance Month. So in honor of that, we are going to answer a question from someone who’s looking for guidance with parenting their son who’s just diagnosed with autism. So I’ll read this question in a second, but I also want you to know that if you’re listening and you are a parent with an autistic child as well, that I’m going to go ahead and add a few other podcast episodes and resources into the episode notes. So there’s a lot there and I just hope that will be helpful for you no matter where you are on your parenting journey. Okay. So Rebecca, are you ready for this question?

Dr. Rebecca Hershberg (03:22):

I’m ready.

Dr. Sarah Bren (03:24):

Okay. So this parent writes in. “My son who is in first grade was recently diagnosed with autism. He’s really bright and funny and has some really strong interests, but he definitely struggles socially and gets overwhelmed pretty easily. We haven’t told him about the diagnosis yet. I think part of me feels like he’s still little and maybe he doesn’t need to know, but then I also worry that he already feels different and might start thinking something is quote wrong with him. I just don’t know what the right move is. Do we tell him now so it doesn’t feel like we’ve been keeping this big secret or should we wait until a certain age? And if we do tell him, what do you actually say to a six year old?

Dr. Rebecca Hershberg (04:03):

Such a great thoughtful question. It’s so interesting to think of parents today versus parents 20 or 25 years ago. There’s so much amazing parenting that just goes into asking a question like that.

Dr. Sarah Bren (04:17):

I know. And like the early intervention and the … I just think people have more awareness and more to our point earlier about the title of Autism Acceptance Month, but like there’s a lot more awareness and there’s a lot more acceptance and therefore more knowledge. And people are like, ” Oh, I am pursuing a diagnosis. “It was interesting because when I was reading this question, my thought was, I’m curious how this family received the diagnosis and for that to have also left them with a child who doesn’t know they have it because there’s different ways of getting diagnosed with autism. Some are more collaborative and comprehensive, in which case the child’s probably going to participate in this in a way that they’re the concept of … They might not necessarily know what the diagnosis is, but like for example, like at our practice, we do neuropsychological evaluations and autism evaluations and that process kind of involves talking to the child about it. So for them to have come out of that, not knowing that they have autism would be unusual at a practice like ours.

Dr. Rebecca Hershberg (05:31):

But I don’t think that’s true because I think often, and I say this as someone who’s worked in a practice with neuropsychological evaluation, someone whose kids have gotten them, so on and so forth, working with clients who’ve gotten them. Most of the time, and this is actually the first piece of advice I would give this client, and so it fits in perfectly, or this listener, excuse me, it’s framed in a very general way, at least at first, right? We noticed that some things are really, really, really easy for you to do and some things are harder for you to do and we want to get to know your brain and see how your brain works and see the things that we might be able to do to make some things easier. It’s framed in a very kind of friendly, everybody’s wiring is different, there’s some thing…

Dr. Sarah Bren (06:17):

And neutral way, like non-pathologizing.

Dr. Rebecca Hershberg (06:20):

Exactly, exactly.

Dr. Sarah Bren (06:21):

And also developmentally non-jargony, like a developmentally appropriate language that is hopefully not jargony.

Dr. Rebecca Hershberg (06:28):

Right. Which doesn’t include typically a diagnosis, right? A kid isn’t told you are here to see whether you have autism, right? So I think…

Dr. Sarah Bren (06:37):

Well, some kids are, and I think that’s also another…

Dr. Rebecca Hershberg (06:41):

Okay. So that’s interesting because I’ve never actually heard that.

Dr. Sarah Bren (06:43):

Again, that’s actually, to be clear, I think there’s such a … This is just tricky, right? There’s a lot of tightrope walking and gray space, and there is no one right or wrong way to do this. I just always want to be very clear. If you’ve already had a conversation with your kid about a potential diagnosis or a known diagnosis, or you have avoided having this conversation with your kid, there’s no shame in this game. Everyone is figuring this out as they go. I don’t want anyone to feel badly at all if we’re talking about ways we might consider recommending doing something. If you did it differently, don’t worry.

Dr. Rebecca Hershberg (07:23):

I mean, especially if a parent has autism and is like, ” I have autism, we want to see if you have autism. “I mean, there’s all different ways. Absolutely. And I didn’t mean to imply otherwise. In my experience, that hasn’t been my … I don’t even want to say typical, but that just hasn’t been my experience. Most of the time in my experience, it’s been more general at first, and then following the evaluation of family, typically parents prior to kids, but certainly prior to six year olds, I think it all looks different if a child is older, receives the results of the evaluation and whether their child meets criteria for a particular disorder and that disorder is given a name. So I wouldn’t be surprised if the listener in the question, potentially to your question earlier, had a conversation with their child about the evaluation if their child participated in it, but not necessarily the word autism. In fact, it sounds like from what her … Clearly not the word autism, because that’s the question at hand is whether and when and how to tell her child that that is in fact the diagnosis.

Dr. Sarah Bren (08:30):

Right. So I guess just to be clear, because we might be confusing people, so I just want to be really clear.

Dr. Rebecca Hershberg (08:34):

We never confused people, Sarah.

Dr. Sarah Bren (08:36):

God, of course not.

Dr. Rebecca Hershberg (08:38):

We make things simple to the point.

Dr. Sarah Bren (08:40):

Yes. Very, very black and white, unequivocal. No. But I guess what I’m trying to say is, there are situations where you might, one, you might just get a diagnosis from a pediatrician or a developmental pediatrician, and they might not spend a tremendous amount of time engaging in a lengthy evaluation process with your child. You might have a neuropsych evaluation that looks more interactive, comprehensive, multiple sessions of interfacing with the child. All of those are okay. You might do any of those and talk to your child ahead of time about the possibility that this is what we’re looking for. We’re looking to learn more about, like you’ve said, Rebecca, beautifully, we’re trying to understand how your brain works and we’re trying to understand how you move through relationships and how do you get along with and understand your friends and whatever. There’s a lot of ways to talk about it and we can certainly get into sort of scripts for explaining that at developmentally different ages.

(09:55):

But to your point also, if the child’s already familiar with the concept of autism, you might just have told your child, “This is what we are wondering about because mommy has it or daddy has it, or your grandpa has it. ” And so sometimes kids are familiar with it, but I’ve also seen places where the child isn’t informed and then that’s an intentional move or perhaps it’s … I would think if there’s a reason for or an opportunity for the person who’s doing the evaluation to also have a feedback session with the child to talk to them and the parents … I think parents first, right? A feedback session with the parents to really explain freely what this means and be able to answer any questions they have. But I love when there’s also a feedback session with the evaluator and the parents and the child together so that the evaluator can explain in developmentally appropriate language with the parent’s present model for the parents, some of these ways to kind of explain it to the kid and make it feel … Because talking about neuro-affirming approach to autism treatment, diagnosis and treatment.

Dr. Rebecca Hershberg (11:09):

I agree. There absolutely needs to be, I think even for a six-year-old, a conversation with the evaluator, let’s get to the person’s question though. I do feel like, which is sort of … It sounds like they are in a position where they have received the diagnosis and they haven’t told the diagnosis to the child yet, and they’re wondering whether and when and how that’s appropriate. And I certainly have worked with a lot of clients who have the same question. I think there’s worry about not everybody having the same accepting attitude, about there being stigma, about a child feeling labeled or different, as she mentioned in her description. I will say that in my experience, and I believe we talked about this in another episode because it feels familiar. I don’t remember what, but giving a diagnosis, a name is actually, I have found for the most part empowering for kids, giving it sort of the official name, but then they can also name it something else, right?

(12:11):

Like, Socially Scared Sam or something. And the idea that this is a part of you, it’s not your whole self, but it’s something that can help explain why some things are harder for you in a way that makes it, again, it’s not about you. “You’re not doing anything wrong. You didn’t fail at anything. This is something that looks a little bit different or acts a little bit different about your brain and here’s the ways in which it’s wonderful and here’s the ways in which it can be hard. And it has a name again, and it has a name because so many kids have that same thing with their brain. And so it leads to sort of empowerment, to community.

(12:54):

It’s not to say there’s never a situation where a child might be, but why do I have this? And, ” Am I the only one in my class? “Of course, there’s going to be questions, but I tend to err on the side when I’m speaking with clients about this. And again, frankly, with my own kids, with the issues that they’ve had, full disclosure, not autism, but certainly other stuff, I tend to err on the side of giving a diagnosis sooner, telling their child their diagnosis sooner rather than later to avoid exactly what this reader, or I’m sorry, this listener said, which is this idea of like, why did you keep this from me? So not to be like this big thing about like sit down to tell you when you were six, you received a … It just becomes part of the family narrative and an integrated and I have found relatively healthy way.

Dr. Sarah Bren (13:48):

Yes, I love that. And I think, I mean, I feel like we can’t really not bring up neuro affirming approaches when we’re talking about how you talk to kids about any type of diagnosis in the neurodevelopmental range. Like this is true for ADHD. I think it’s true for autism. It’s true for a lot of things. I mean, OCD, anxiety, all kinds of stuff, learning disabilities, anything. It’s like different people have different ways of thinking and making friends and engaging with the world, right? And celebrating that and starting with the strengths in addition to the challenges, like I don’t think you want to just paint it like this is not a big deal, everything’s totally fine, these are all strengths, because I think that also doesn’t acknowledge the child’s stress- Lived experience. And the way it is making life harder for them, and we want to name, validate, honor that too. But I think, I keep thinking about like this book…

Dr. Rebecca Hershberg (15:01):

Is it Wonderful Wired Brains?

Dr. Sarah Bren (15:05):

Oh no, but there’s lots of good books for this. But so Yael Rothman came on the podcast. She’s a neuropsychologist and she wrote a couple books called Different Thinkers Series and it’s like Different Thinkers ADHD, Different Thinkers Autism. I think she’s coming out with one for dyslexia, but like…

Dr. Rebecca Hershberg (15:23):

They’re kids’ books?

Dr. Sarah Bren (15:24):

They’re kids books. They’re totally for this age. This is actually a pretty good resource for this listener, but they’re really for like the elementary, you could even go older, but like younger children and it like has characters in the book, like multiple different characters that the book kind of introduces because again, in a lot of these diagnoses, they don’t … One child who has an autism diagnosis does not look like the kid sitting next to him who also happens to have an autism diagnosis, right? And there’s different sort of clusters of traits and you don’t necessarily all have them all, right? And so it follows different characters that kind of have different kind of archetypes of these diagnoses.

(16:16):

But it also talks about it in terms of like, ” Hey, does this ever happen to you? I’m really, really into this particular thing and I only want to play with this thing and I really want other people to play with me, but nobody else really seems that interested. “So I kind of just play it by myself or like it kind of takes an experience of like, in this case, like hyper fixation or hyper interest in a particular subject, which is very common in autism, and then difficulty inviting others to engage with you in a way that they are able to kind of connect and want to play. And so then there’s a lot of like sometimes feeling lonely or sometimes feeling like they don’t know how to break into social situations. So it’s like kind of taking symptoms or signs or traits of the diagnosis and painting a picture of like a relatable scenario that a kid might get like, ” Oh yeah, that happens to me too.

(17:20):

“So it’s also like normalizing that there are things that are tricky, but it’s also just not reading through a list of like these are the things that make someone have autism because that could be kind of like not so relatable or a little confusing, especially for younger kids that are like, ” Okay, you just named a bunch of words. I’m not sure what they mean. “Giving examples of what that looks like in real life can be very helpful.

Dr. Rebecca Hershberg (17:46):

Yeah. And 100%. And I also think as with everything we talk about on this podcast, you’re following your kids’ lead, right? So, if your kid is like, ” Oh yeah, I have that. Tell me another, let’s talk. “Great. If your kid is like, ” Uh-huh, uh-huh, what’s for snack, my iPad, then they don’t want to talk about it. And it may mean that they’re highly defended and whatever, or it may mean they’re just bored and it’s not landing with them right now.

(18:18):

I think these conversations, especially if our kids have a diagnosis, they’re not one and done. It’s sort of opening up a dialogue and queuing your child into the fact that you know what’s going on, this is okay for conversation, if there’s questions, if there’s thoughts, if there’s frustration, if there’s glee, like that this is just available and it doesn’t have to be this sort of super serious one-off conversation. And if your kid’s not in the mood to have it, follow your kids’ cues, but saying the name of the thing to the extent that that’s this listener’s question, I tend to believe just as far as specific recommendations go, for the most part, I am team say the name sooner rather than later, which again, to be very clear is not to say that if you haven’t done that or if you’ve decided not to do that and feel strongly against doing that, usually you, 100%.

(19:16):

There are a million different ways to do this and no one correct way. On balance, since the listener asked the question, I just feel like I want to weigh in, in an honest way and say, “I very rarely advise against sharing a diagnosis with a child once it’s been given.”

Dr. Sarah Bren (19:36):

Yeah. And I think to your point of following the kids lead, in addition to it being like, we can have this conversation spread out over lots and lots and lots of different touch points, we can also just sort of … I think the fear that a lot of parents have, and I kind of hear this a little bit in this person’s question, actually explicitly this person’s questions, is if we use the word autism, are they going to think there’s something wrong with them? And I think labels are something that adults have come to have a lot of associations with, but kids probably not so much. And actually allowing yourself to be the first person that introduces this label to your child and getting to define it from a strengths-based perspective and like a welcome and non-stigmatized perspective actually allows you to imbue that word, that quote label with a much more neutral attribute and association for your kid that it doesn’t.

(20:40):

I think we have to remember that if your kid isn’t really familiar with what autism is, that explaining it to them, being the first person to explain it to them is a gift versus not saying the word because we’ve associated from our adult experience in the world of many, many, many years and like lots of unfortunate neuro, non-neuro affirming kind of messaging around autism spectrum disorder, that we hold a lot of associations to the word potentially that we are maybe projecting onto our kid, but our kid might not. So I just want to like reframe that. It’s a gift to be able to define this for your child versus not saying it and having them hear it somewhere else and not having the definition you would want it to be associated with used.

Dr. Rebecca Hershberg (21:35):

Absolutely. I agree wholeheartedly.

Dr. Sarah Bren (21:38):

One other thought, and I’ll end on this, is I think we are moving into a time where there is more representation of like characters and story books and like TV shows for kids where characters have autism. And I think there’s like a Sesame Street character that very explicitly…

Dr. Rebecca Hershberg (22:06):

I forget her. Is it Abby? It might be Abby?

Dr. Sarah Bren (22:10):

I don’t remember. Maybe Julia.

Dr. Rebecca Hershberg (22:13):

Okay.

Dr. Sarah Bren (22:14):

It’s Julia. I looked it up.

Dr. Rebecca Hershberg (22:15):

Oh, well then my Sesame Street knowledge is outdated, but that’s okay.

Dr. Sarah Bren (22:21):

To be fair, it was introduced in 2015, so you might not have been watching then. But a quick Google search will probably help you find some shows that you’re a kid that might fit your kid’s age and books, but like I’d start celebrating, again, like celebrating it and making sure there’s representation in their environment so that they can start to feel like, “Oh, people know this, people understand this, people get this, and I see myself in other places.” I think that could be really powerful.

Dr. Rebecca Hershberg (22:58):

Absolutely.

Dr. Sarah Bren (22:58):

So that’s, I think, as comprehensive as we can get.

Dr. Rebecca Hershberg (23:04):

Don’t challenge me.

Dr. Sarah Bren (23:08):

Thank you so much for writing in your questions. Please keep them coming. And to all the families out there celebrating Autism Acceptance Month, we see you, we love you, and we are celebrating with you.

Dr. Rebecca Hershberg (23:25):

Absolutely. Here, here.

Dr. Sarah Bren (23:28):

Thank you so much for listening. As you can hear, parenting is not one size fits all. It’s nuanced and it’s complicated. So I really hope that this series where we’re answering your questions really helps you to cut through some of the noise and find out what works best for you and your unique child. If you have a burning parenting question, something you’re struggling to navigate or a topic you really want us to shed light on or share research about, we want to know, go to drsarahbren.com/question to send in anything that you want, Rebecca, Emily, and me to answer in Securely Attached: Beyond the Sessions. That’s drsarahbren.com/question. And check back for a brand new securely attached next Tuesday. And until then, don’t be a stranger.