Ep 22/ Asked & Answered: Should I tell my child about their neurodiversity?

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Parenting can be a challenge for anyone, even in the most ideal conditions. But parenting a child who has a different neurotype than you can come with unique challenges.

I want to discuss a question that I've gotten a few times: Should I tell my child about their autism? How do I portray being autistic as an ultimately positive and valuable identity while not skipping over the real challenges that are associated with it?

This can be a complicated question because everybody's situation is different and unique. Find out why I think on Neurodiverging today!

🎧 Rather listen than read this post? This transcript is based off of Episode 22 of the Neurodiverging Podcast! Listen on Apple Podcasts Google Podcasts | Spotify

I want to give a warm welcome back to Zach, David, Teresa, Sara, and Anon! Thank you for supporting this episode of Neurodiverging!

Transcript for Ep 22: Asked & Answered: Should I tell my child about their neurodiversity?

Due to technical issues, this transcript still has many errors. I'm working on it! - Danielle

Parenting can be a challenge for anyone, even in the most ideal conditions, but parenting a child who has a different neurotype than you can come with unique challenges.

I want to discuss a question that I've gotten a few times: "Should I tell my child about their autism? How do I portray being autistic as an ultimately positive and valuable identity while not skipping over the real challenges that are associated with it?"

This can be a complicated question because everybody's situation is different and unique. Different kids are different! They are different ages, and have different abilities to understand what's going on in the world.

Parents have more or less experience with real autistic people. Parents are, or are not, autistic themselves.

So there are a lot of variables in place. I have my own ways of approaching autism in our family as an autistic parent and with an autistic child, but our ways won't work for everyone.

Luckily, what is really cool is that we actually have research on this! So today, I want to share with you some different research that has been performed around this question, and what we can take away from some of those pieces.

About the Research

The first paper I'm going to reference is called “Short report: Autistic parents’ views and experiences of talking about autism with their autistic children by Laura Crane, Lok Man Lui, Jade Davies, and Elizabeth Pellicano.

This paper came out this year (2021), but the research was actually performed in 2019. Let me tell you a little bit about what's going on with this paper and why I think it's pertinent. The researchers felt that there wasn't a lot of research being done on how parents talk about autism with their autistic children, especially in families where one of the parents is autistic as well.

So what they did is they created an online survey to gather data from what ended up being a small group of 34 autistic parents of autistic children in the UK. Although some of the questions were closed-ended, most of the questions were open-ended, which means that the parents who were taking the survey could write in their answers with their own language, using their own ideas.

They were not choosing from a multiple choice or a true/false scenario. The research and the information that we got from this study is really cool because it's authentic to the individual. It's not just researchers collating different data into different pieces.

So, what I like about the research in this study is that a lot of the data they got is something that a parent actually typed in and not something that a researcher wrote, and the parent was like, "Well, I kind of agree? I don't know..."

[About 10 seconds is missing here - working on it! - Danielle]

And you want to make it clear that autism is a natural variation of humanity and part of the human world we live in that you have to normalize autism by talking about it. And that doesn't mean you have to be having deep, serious conversations with your children at all times, but that just bringing it up in everyday conversation can be really helpful.

In our house, when I get overwhelmed, I'll just say my brain is really overwhelmed. And I'm pointing out the fact that yeah. My brain is reacting differently to the situation than another person's brain might. And again, I have very young children, so obviously you could do this differently if you're like, if you have teenagers or somebody else who's, who can grasp more complex nuanced things.

If I'm having a challenge that is based in my autism or in my neurotype, then I do try to draw attention to that because I think it's really valuable to model that for my children. But also if I'm having, if I'm doing something really cool, I see something really working out because. Of my autism.

I try to show that too. And same thing with my kids. You know, the old advice that if you want your kids to keep doing a positive thing, that you don't critique them when they do something bad, you just keep telling them they're doing a good job when they're doing a good job. Right. You notice the good and you have to do that with like autism and ADHD too.

So if you have a kid who's autistic, right. And you notice something that their autistic brain is doing that maybe a neurotypical brain wouldn't that's really useful or cool or helpful, or however, it's really great to say. I noticed that your brain is doing this. And I think that's really cool because the truth is that.

Accidentally a lot of children who are autistic or ADHD or have a different neurotype are told or shown that the way that their brains work differently are not good and not valid and not valuable to the world. So if you can point out circumstances where their brains at our brains are useful, valuable, valid, that can go a long way to countering any stigma they're getting from outside your home or from media or from anything else.

Now, this. Open honest discussions about being autistic in everyday life is also really important in terms of the question of, should I tell my child about their autism diagnosis? I completely understand why some parents, especially neurotypical parents feel some. Stress and some concern about telling their kid about their diagnosis.

I think personally, that getting as somebody who is diagnosis and adult getting my diagnosis, saved my life. Like it made everything make sense. I knew that I was different and not processing things the same way as other people. And I was really good at things that other people didn't seem to be good at.

And I had huge challenges in spaces where other people didn't seem to be challenged. I knew that. Already what the autism diagnosis did. Wasn't changed anything about me, but it gave me a framework to understand how my reign. It's challenged in some ways, but also how my brain is awesome at some things.

And having that framework of saying I'm not a neurotypical person, but I'm definitely a person like I'm definitely still normal in this other way. It's really valuable. And for kids, kids are very capable of telling. That they are different from other kids, even from a very, very young age. And if you miss your chance, this is my opinion.

But if you miss your chance to frame things for your children to frame their brains as totally normal and correct, and positive and valuable brains, even if they're different from neurotypical brains, if you miss that chance by not telling them about their diagnosis, Then they're going to potentially grow up knowing, or thinking that there's something wrong with them, basically thinking, because they know that they're different.

They know they're doing things differently. So if you don't take the chance to get in there early and normalize that difference for them and say, there are other people like you, you're not a weirdo. You are part of this group over here. Right. I know you've noticed that you're not part of this neuro-typical group, but there's still a group for you.

You are still part of the world and part of society. If you miss that chance, potentially your children are going to be dealing with that fallout for a really long time. And I don't say this to scare you or to make you feel like I'm judging you as a parent. It is true that some children. May not have the tools to understand this kind of framing.

But I would say on the whole, most kids are totally capable of being told about an autism diagnosis in a, um, child age appropriate way, and that you're doing them a favor by doing so you frame it as a difference as a different neurotype. Right. They are still normal. They are still part of the group.

They're just not neurotypical that's it that's it. There's no nothing else you really have to say. Right. And I also, there's a quote in the study that I thought was really cool, but one of the parents, one of the autistic parents who took this study had something to say about telling their child, they were autistic.

They said, I'm so glad I told him when he was young, rather than waiting for some time that he was quote, ready. There's this idea that like, I don't know, I've heard this from many neurotypical parents and I don't really understand it. So I'm sorry if I'm not doing this justice, but I do hear this idea sometimes that you're doing your child a favor by not telling them when they're young.

And you'll just tell them when they're like 18 or something or some arbitrary number when they're old enough. And they're, neurotype our neurotypes do not change over, over our age. Right? What changes is how we. Process our place in the world, right? Where the same neurotype one where a newborn, when we're two days old, two hours old as we are when we die, right?

Presentations might change. The world might change around us. The way we approach the world might change. But the neurotype within a certain range is going to stay the same. Not telling your child like holding onto that information for a decade, because you're scared to tell them. That's not good parenting.

Like, I'm sorry, it's just not good parenting. You're not doing them any favors by refusing to allow them information about their own brain and their own health and their own ability to be part of the world. If you are afraid to tell your child that they are autistic, think about why you're afraid. I suspect that in most cases it's that somebody has their own internalized stigma against autism.

So if you're a neuro-typical parent and you're afraid to tell your kid they're autistic. What are you afraid of? Really? What is the concern that you have and think that through. Being autistic is not bad. It's not negative. It's not wrong. Okay. If you're worried about telling your child that they're autistic, make sure you aren't in your brain thinking, well, I'll hurt her by saying it because it will make her wrong.

It'll make her bad or it'll make her not fit in autistic. People are a part of this world. We do fit in tons of us fit in perfectly well. But we do that with the knowledge that we are not neurotypical. If you force us to spend all of our energy, trying to be neurotypical because we don't know where else to fit in or where else to go.

We don't know that autistic spaces are safe for us because we're also autistic. You're doing no one any favors. Okay. The second theme that came out of this paper is the idea of shared understandings between parent and child. The idea that, uh, an autistic parent can understand what an autistic child is going through because they share not only the same neurotype.

But the same experience of the world, the same experience of being autistic and the same experience of how people relate to autistic people. I think that the idea here is that if you are not as sick yourself and none of your other family members are autistic, your child may be the lone autistic person in.

Your social group and that can feel really alienating, no matter how often you tell them that they're not wrong or different or bad, if they're the only autistic person they know, um, they're not probably feeling related to as often as we would like for them to be supported and upheld. So one really good thing to do if you are.

The same neurotype as your child, then giving them personal examples of what they've, what you've gone through and strategies you've used to solve problems in the world is great. Another great thing to do. If, if you're not the same neurotype is your child is to go online, go into your community of safe and find groups of like, there are autistic.

Children's social groups. There are support groups, both for autistic adults and autistic children. And this is not like, just about getting support in the sense of counseling or something, but support in that. Seeing there are other people like you, because you can be told as much as you want that there are other people in the world like you, but if you can't see them and talk to them and then.

See how their experiences are the same as you, you will not be getting that support from them. So there's one thing about knowing there are other people like you, but experiencing that there are other people like you is so such a huge moment for a lot of autistic people. So if you can offer that to your child, you are doing them a great.

Great, great service, helping your child feel like they're not alone in the world, that they have a shared experience and a shared understanding with other autistic people is a great way to build trust and keep communication lines open when, when your child is going through something difficult, knowing that there are other people who might have gone through the same thing.

Whether they want help or not, whether they just want to know that someone else has done it, um, it can be so validating and so positive and experience for them. So I really can't recommend it enough. Okay. The third theme that came out of this study. Was positively supporting children to make sense of themselves as different.

So I've talked about this a little bit on the podcast before, but right now in the Western world, things like autism, ADHD, OCD, bipolar, they're all called disorders. When you go and get diagnosed, you're diagnosed with autism spectrum disorder. You're diagnosed with attention deficit, hyperactivity disorder.

You're disordered. That's what the doctor is telling me, right? Your brain is not. Organized in the way it should be. It is wrong. I don't find that language particularly helpful. And I find that, uh, many people do not find that language particularly helpful because from the neurodiversity perspective as an autistic person, I'm not disagreeing.

I have a different brain and I go about things differently, but I'm not, I'm not like a wrong person. Because I'm autistic. So one thing that's really important when you're talking to your children about a diagnosis is. Supporting themselves as a different kind of person, right? A different brain, rather than talking about how they're disordered or, you know, that medical diagnosis is just not helpful, like from a, from a psychological standpoint.

So talking about disorder can feel really unhelpful and negative talking about difference. You can talk about. That it's okay to be different from other people that everyone's brain works differently. Not everyone thinks the same, not everyone processes as the same. And that's what makes people so cool.

Right? Like the fact that everyone is different is a really positive part of the human experience and it makes the world interesting. So, if you can frame for your child, the fact that they are a part of what makes the world amazing, that is such a gift. You can give them. This is also a really good chance to try to reverse stigma or get in front of any stigmatizing belief by talking about neurodiversity and talking about how all people have different brains.

Really. And there might be groups of people who have similar traits. But that just because someone is different than you thinks differently than you acts differently than you, it doesn't mean they're like a disordered bad person. It means that they are different thinker. Right. And that's normal and that's expected.

This is also a really good way to start talking about strengths of autism or ADHD or whatever the neurotype is that the other problem with the disordered way of looking at things is that it really focuses negatively on the things that are challenging for us. And yes, autism brings challenges. Like nobody's trying to say otherwise ADHD brings challenges, but being neurotypical brings plenty of challenges too.

There are plenty of things that neurotypical people can't do very well compared to ADHD brains or autistic brains. And that's not to put down or a typical people by any means. But rather to say that we all have different strengths and different weaknesses. And if you can really talk about different brains as being differently, capable, Right in different areas.

Then you can really start to frame for your child. The fact that even if they have challenges, sometimes there are going to be things that they are going to be so good at and so capable at. And that can be really empowering for a young person. Especially if their school or their friends or the other social circles going on around them are somehow more focused on their challenges.

Like for example, if you've got a child with ADHD who is not functioning well in school, because they're hyperactive. You know, there are plenty of people with ADHD who use that hyperactivity to their benefit. And so talking about differences really helps you focus on how it's not the child. It's not the individual that is wrong.

It's that the structure underneath them is not supporting them. But that can really create a boldness for your child and a clarity that they're not the disordered one, that the society is not supporting them. Even very little kids can understand this. I once saw a teacher was talking about, um, example less than they did in their class, where they had one student pretend that they had an injury on their finger and they gave that student a band-aid for their finger.

That's very helpful for that student. Then they went around the classroom and every student had to choose where they had their pretend injury, but no matter where their injury was, they got a bandaid on the finger. Now, for folks who have an injury on their finger, that bandaid is really helpful for folks who have an injury on their knee.

That bandaid is not helpful. So. We we see that treating everyone quote, unquote equally or the same doesn't work when people are actually different underneath. So even little, really young kids can understand this idea that if we treat everyone exactly equal per you know, all the time that we're not actually creating a quality and.

When that comes to talking about, you know, how your school or your teacher or your kid's social networks of whatever type, if they're not supporting your child as an individual and noticing their differences and taking those into account, then they're not supporting the neurotype that that child has.

So even little kids can understand the difference between equity and equality and understand the difference between a person doing something wrong. And the system. Being the problem. Who's the problem, the person or the system. Okay. And that brings me actually into the fourth theme, which is tailoring discussions to the children's specific needs.

So everything that I've mentioned so far, I think is generic enough to be adapted to almost every child out there. But you do only need to talk to your children about the things that are actually relevant to their situation. Especially again, younger children, a teenager is going to be able to research themselves to some degree and talk to you about more complex issues.

But for younger children, you just need to focus on the things that they are stuck on or the things that they really want. So you don't have to be hung up on terms. You don't have to be hung up on vocabulary words. You're just trying to find resources. Does that explain autism or ADHD in an age appropriate way?

And that highlights the traits that apply to your child. Again, every child is different. Every autistic person's different, every ADHD person is different. Right? So telling your kid about a list of ADHD traits as lined out in one of the diagnosis, manuals is not going to probably be helpful for your child.

What is helpful is as you go through everyday life in a very light chill way, not, you don't need to have this heavy, serious discussion about it, but in a very like normalizing chill way. You're just saying, I notice that your body is very busy. And somebody is, are not very busy and that could be related.

You know, that's how different brains are different. Or I noticed that you really like to focus on the set of activities and your sister. Maybe doesn't really like to focus on sets of activities. And that's ways you're a different one of my children, my, my autistic son. He goes up to people and stares at them in the eyes.

And it can be really off putting to some folks, but it's a stim and his sister does not like it. His sister thinks it's, it's quite off-putting, which I understand. Um, but talking about how well your brother likes to do, like, you know, there should be boundaries. He shouldn't just be able to walk up to her and freak her out.

But. Pointing out that the feeling that he gets when he stares into somebodies eyes versus the feeling that she gets, when she stares into somebodies eyes, how those are different feelings, because our bodies are reacting differently, just as basic as that can be really, really validating, um, for whatever the behavior is.

And then obviously, you know, we'd want to talk about consent and we'd want to talk about alternative methods of getting my son, the stimulus he needs without freaking his sister out. So like, you know, There's the normal parenting that has to come into that. But you can very basically just point out. I noticed that you're doing this thing because it makes your body feel good, you know, and another body might feel differently.

And that is talking about neurotypes that is talking about neurodiversity. It does not have to be complicated. And if you do it day to day, occasionally. You know, then you're peppering it into your conversations and your kids will become aware of it. And, and start to talk about it themselves. I noticed that my body does this, but I noticed that her body doesn't seem to do that.

What's up with that and they'll bring it up themselves. And that's the other thing is if you can keep your conversations as child led as possible, like, I might bring something up to my kids, but if they're not into talking about it, I will drop it like a hot coal. If they bring it up, then I'm always trying to give them that attention and focus.

On them in those moments because I want to validate their experience. And I also want to encourage them and show them that it's important to me that they're paying attention to their own ways of thinking their own ways of processing and their own bodily awareness. So when they bring up any of those things, I try to drop what I'm doing and really focus on them because I want to validate that thinking about your bodily awareness is really important.

And if you're taking the time to do that, then I'm here for you. And that's another child led way. To really pepper in neurodiversity into the conversation day to day. So that I think is really important and something that's pretty easy to do honest once you get in the hang of it. So I just want to talk about two more things really quick.

The study that I'm using, that I'm basing this episode off of, um, noted that in previous research done on. How to talk to children about autism. Most of the previous research done before this study was done on probably neurotypical parents, probably the best way to say that would be non-autistic parents or parents without an autism diagnosis.

So previous studies on how to talk to children about autism have not asked parents for their neurotype in the collection data. And so it's probably not fair to say that all the people taking it were neurotypical, but we don't. No for sure that they weren't. So this research that I've just been alluding to through the course of this podcast episode is different because it is all autistic parents, either self-diagnosed or professionally diagnosed, who are giving their opinions about how to talk to children about autism previous studies, though, with probably more neuro-typical.

Parents had two main, big differences between the groups. First in the sample with autistic parents, these parents pointed out that their own experience being autistic in the world felt like it was a great value to their parenting and their, and their understanding and empathy of their kids that having gone through.

So many of the challenges of being autistic in a neurotypical world. As they have already that they could help their kids navigate that somewhat better and have empathy for things that were, were really hard and challenging. And then the second thing that the authors pointed out as a difference between this and previous research is that autistic parents, at least in this study, Did not seem to be nearly as worried about other people finding out about the kid's autism as neurotypical parents were.

So neurotypical parents in previous studies seem to be worried that if it got out that their kids were autistics, that the kids would experience some negative feedback or negative stigma from. The knowledge of their diagnosis being made potentially public autistic parents didn't seem to worry about that hardly at all.

Autistic parents just didn't feel like there should be a stigma associated with autism and felt more confident in their ability to combat potential negative feedback about the diagnosis. And so it really wasn't as much finished you. And I know when I've talked to neurotypical parents, um, when I get emails from neurotypical parents asking about their autistic children, it does seem to be.

Often brought up that they're worried that if they tell their child about their diagnosis and then that child maybe tells a teacher or friends or whatever, when the family isn't all the way out about the autism diagnosis, that that could cause some kind of negative reaction that will harm their child.

And although that may happen, sometimes it is not something that autistic parents themselves who do have more experience being autistic than neuro-typical people are worried about. So it seems like that shouldn't be something. That's like at the forefront of your mind. And I would encourage you to really think about more.

What could, what positives could come out of telling your child about a diagnosis rather than worrying so much about the negatives? Although many people are still biased against autistic people that the world is changing, and by the time your kids are grown up, I really do think we're getting there and your children can contribute to making it a more equal world for everybody.

And think of as a social justice aspects, that if every kid who was autistic today was able to be happy about it. And to feel like they had a part of the world and they deserve to be here and there was nothing wrong with them whatsoever. Think about how the world would look in 10, 15, 20. A hundred years.

Okay. So I hope this has helped you answer it. A couple of questions. Again, if you want to read this study, I will put it in the links. And obviously a lot of this was my own interpretation and my own opinion. Thank you for being with me on neurodivergent today. I hope that this discussion about talking to your child about autism was helpful for you.

If you have any feedback on this episode or advice for other parents dealing with this question, Please email me@neurodivergentdotpodcastatgmail.com. I would love to talk with you about it and connect you with any resources until next time we are all in this together.

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