fbpx

“But you seem so sociable” – Experiences of High-Masking Autistic Folks

Exploring Neurodiversity Podcast – Episode 29

by Adina Levy

Play. Learn. Chat - Exploring Neurodiversity Podcast Logo

 

In this episode, I explore the reasons and impacts of masking for high-masking autistic people (who are often, but not always girls, AFAB, or non-binary folks). I talk some ways that high-masking autistic people can appear in the world, and share my hope for the future of Autistic kids and people everywhere to feel freer and more comfortable to know and be themselves!

Yellow Ladybugs Conference that I mention: https://ylbconference2024.vfairs.com/ – If you have ANY Autistic people in your life who are girls/women/AFAB/nonbinary, this is the event of the YEAR. It’s 3 days online and the 3rd day is also in person, in Melbourne. I’ll be there! I’m also on a panel for the 2nd year and adore this organisation and conference.

Want to learn more with me? Register for my free webinar to kickstart your ND Affirming Practice journey: https://playlearnchat.com/free-neurodiversity-webinar/ 

 

 

 

 

Transcript:

Welcome to the Exploring Neurodiversity Podcast for adults who support Neurodivergent children. Whether you’re an allied health professional, medical professional, education professional or a parent of a Neurodivergent child, you are welcome here.

This podcast is recorded on the Aboriginal lands of the Gadigal and Bidjigal people. I acknowledge the traditional owners elders past and present, and I extend my acknowledgement to any Aboriginal first nations people listening in.

I’m Adina from Play. Learn. Chat. I’m an autistic ADHDer, a speech therapist, professional educator speaker, and I also support Neurodivergent Business owners in my other business, neurodivergent Business Coaching and Consulting.

I’m obsessed with creating a world when Neurodivergent people are understood, embraced, supported, and celebrated. A world where we Neurodivergent people can understand ourselves and thrive in a life aligned with our individual strengths, wants and needs.

On the Exploring Neurodiversity Podcast, you’ll get my perspectives and conversations with my Neurodivergent friends. All about how adults can best support Neurodivergent children in our lives.

I bring a Neurodiversity Affirming approach and indeed a human affirming approach to the support that we all provide for Neurodivergent kids in our lives.

Let’s dive in.

But you seem so sociable. You can’t be autistic. This is something I’ve been told a few times by people who I would have hoped should know better, but didn’t. I wanted to have this whole episode all around the experiences of high masking, autistic folks, specifically my own, but also talking about other people who I’ve worked with and supported and friends and other people in my life who are high masking, autistic people.

It’s a very common experience for us to be dismissed and gas lit even. Generally not through malice, but actually through a lot of misinformation or lack of updated knowledge about what autism can look like in different people.

So in this episode, I’ll talk about high masking autistic people. What does that mean?

This talks about people like me who are really, really we’ll say good at hiding our true selves, our true needs. Our sensory needs, our emotional needs, our social capacity. We’re really good. Or really well-practiced at keeping that stuff inside so that we appear to look normal ish. Also, we appear to just not be different enough so for different reasons so that we feel safe from being called out, looking different so that we feel included. So that we don’t make other people feel uncomfortable with our presence.

At this stage, I’m not going into whether this is a good thing or a bad thing. Let’s just say it’s a mixed thing. It’s a very common experience for autistic girls and people assigned female at birth and nonbinary folks to be high masking. There certainly are males who are high masking as well. So that’s why we’re not going female autism or anything like that here that’s not an accurate construct.

So really we’re talking about anyone whose presentation or how they experienced they’re autistic neuro type. Is in a quite internalized way, kind of self-directed cognitively keeping it in our own brains. Rather than expressing it outwardly to the whole world broadly.

So masking is kind of about hiding your true self. And I find that extends to even hiding ourself from ourself. What I mean by that is the layers and layers of masking that go on mean that it can be really hard to know who our true self is. It’s really hard to know. Our true preferences after communication style are three sensory choices.

Our true social capacity. When you’ve spent a lifetime. Masking and hiding your true self. It’s very, very hard to know what that might be. Who you really are.

This can be both a conscious and a subconscious process. So what that means is sometimes when I’m out and about in the city, for example, I might choose to look at a little bit in inverted commas, normal.

I don’t feel like standing out. I don’t really feel like people staring at me, so I might wear very normal-ish kind of clothes and try to act pretty straightforward and normal ish. I’m not sure how I like succeed at that, but that’s another question.

To some degree that is a conscious choice and a conscious effort.

And I am a person who I can acknowledge the privilege that I have to be able to have that control over my appearance and my behavior and my communication and my actions.

It is important to note that there are many autistic people who do not have that level of conscious control over their. thoughts, their actions, their outward appearance. And how their body moves to the extent that masking is not an option. And that certainly comes with its own challenges.

Masking can be a subconscious process. And this is a huge, huge impact. When I think about all the experiences I had as a child that I’m trying to untangle and trying to understand why I do certain things or why I don’t do certain things. Very often. I’m sure it’s been in response to the world around me, giving me messages around whether this is appropriate, whether this is something we applaud and encourage, or whether it’s something that should be diminished.

And when kids get those messages growing up too, but certainly kids are incredibly impressionable. When autistic kids get messages from the world around them, that c ertain interests of theirs are not v ery valuable to the world around them, or they’re not perceived very well.

Well, certain stimming behaviors that means in a repetitive movements or repetitive actions that somebody does. Might be kind of frowned upon or squashed without somebody understanding. Why or what sensory function that serves for that purpose? They might be laughed at or teased for doing certain repetitive hand movements, for example.

And then the messaging that goes through to that person is that the way that their body naturally wants to move is wrong. And the more they get these messages. The less they learn to trust their natural inclinations.

This is a very, very deep problem. I don’t believe I’ll ever untangle. All of this stuff for myself. But I think by talking about it and thinking about it, I really hope that we can create a more understanding future for the kids who are growing up today in their world, where difference is more supported and understood and more compassionate views on, you know, somebody acting differently, talking differently, interacting differently.

So let’s dive in a little bit to the sentence that I’ve been told, but I find like a stab to my heart. But you seem so sociable. You can’t be autistic. There’s so much going on in a sentence like that. What you can see is as first of all, a misunderstanding that autistic people can’t be social or ant social by nature.

There’s also enable us belief in twined in that where somebody might think that saying that to you is a compliment. Where the flip side is saying you artistic may be a negative thing. I personally do not believe that. Being autistic is part of me. It’s like I have two feet. I am autistic. These are facts about me.

There’s good things and bad things about having two feet and there’s good things and bad things about being autistic, but neither of these things are inherently good or bad on their own. They’re just parts of me. The reason I’m saying bad things about having two feet is because I’m somewhat clumsy slash dyspraxic and I did just whack my foot.

So my own personal experience with my social capacity is that it is quite limited. I can be social and I want to be social. I want to connect with other people. But there are certain ways that this works better for me and certain scenarios and situations where I feel more comfortable. And there are certain situations. Where I feel less comfortable and more drained after that thing.

As a kid, I definitely found that I had a desire to fit in. I think that’s quite natural for a lot of people. It’s quite a, I believe a human trait that for many people, we want to be connected with other people. We want to be in community, but how exactly that looks and who that community is, can be very, very different for all of us.

I personally love one-on-one interactions. I feel like I can keep track of all the social dynamics and I can give that person full attention. Rather than group settings or bigger kind of social events. So like a party to me, I have to think really, really carefully about. If I’m going to a big social gathering or a party, why am I doing that? Can I, can I get out of it is almost always my first inclination. I find it incredibly stressful and effortful.

There’s so much sensory input. There’s so much social data to keep track of, to make sure that I am. Making the right connections with people saying the right thing to the right person. Making sure I’m not ignoring anyone, all these different aspects that I have to keep track of. And while I might enjoy all of those relationships, one-on-one really well. I find it very hard to do that in a group setting.

That said I can do bigger social things for a good reason. That’s called a motivation. So big family occasions, and motivating event where it’s like something that I really, really will get something out of like an interesting conference. So I’m thinking about the yellow ladybugs conference, where I’m going for the first time in June, I’ll be at the in-person day.

I’m going to share a link to yellow ladybugs conference in the show notes, because it is. the event of the year. Super super recommend that any parent professional, anyone really listening to this podcast should be attending the yellow ladybugs conference. Most of it’s online and recorded as well. Anyway.

So for me while that’s going to be hugely overwhelming to go on that last day, where it’s in-person in Melbourne. No, that it’s going to be incredibly powerful for making connections and meeting all these wonderful folks who I’m connecting with online.

It’s going to be interesting and I will be amongst near akin amongst other Neurodivergent folks broadly. So that’s going to be wonderful. So yeah, very big. And. Kind of stressful. Quite draining, but should absolutely be worth well. I hope so.

I also find that social things that have a clear structure are really, really helpful for me. So rather than just a party, honestly, I don’t know what you do at a party. I never have you kind of go. And then there’s like things and talking and schmoozing and I don’t really know the rules. I’ve never kind of got them. Alcohol helps in those cases.

But in this case, I’m thinking about seven years ago, I did a lot of intensive triathlon training. And it was highly social. I think about four times a week, I was meeting with a group. We were called the cupcakes . Also called M M Z the million miles club, but actually we were the cupcakes.

And it was very social for very many hours of the week. It was also absolutely wonderful. Such a beautiful experience. And I think a big part of it was, it was a very structured way of having social interactions. All of our training events had a bit of a social structure to them and that structure ended usually in a coffee for about an hour or something like that. But it was all quite predictable. And it was framed around a joint. Like a shared interest activity. So, we all. I think enjoyed it as far as I know. And I certainly found it was one of my most social times in my adult life, but also it was not a draining time. Physically energetically, very draining. Yes, but also, on the social capacity side, it was really wonderful.

So that’s my own experience with my social capacity and why I might seem sociable, but there’s a lot more going on behind the scenes. I mean, I’ve barely scratched the surface while explaining some of these factors to you right now, but hopefully that gives you a little bit of an insight.

Let’s have a chat about some of the ways that high masking autistic people can appear in the world. Some of these are familiar to me. And some of these are other people’s experiences as well.

So we may appear very talkative. And that might be in conflict with this idea that autistic people don’t communicate well or don’t have good language capacity, which is not true.

Somebody who’s very talkative. The flip side of that might be that they are kind of over chatty and can dominate a conversation.

It may be harder for a high masking autistic person to tune into their conversation partner and give them a speaking go. There’s definitely strategies that can go both ways.

And thinking about the double empathy problem. We want to make sure that when we’re commenting on interactions, We’re not assuming that autistic communication is wrong, but we can still acknowledge that in any interaction, there at least two people who were involved and their needs are worth considering.

And it’s a dynamic thing where everybody should be able to be heard, to be listened to. To share their thoughts in the way that is right for them. So it can be a bit of a dance, any kind of conversation or interaction. Maybe I’ll talk more about that dance in another podcast episode, coming up soon

High- masking autistic person might look like they could find the changes in routine. Except not really. They may act as if they’re fine in the moment in those dynamic situations. Maybe they’re at school and their regular teacher is not there. And they’ve got a replacement teacher who’s there.

They’ve never met this replacement teacher. And in that moment, a high masking autistic person. I may either choose or subconsciously appear like they’re coping and managing. But actually all day long, that might be incredibly hard for them cognitively and emotionally, to be able to manage the fact that this plan that they had or this idea they had about how their day would go. Has been completely turned on its head.

A lot of this results in explosions later, or shut downs later, explosions. I mean, meltdowns. So the cost of masking is this energetic cost and this emotional turmoil cost that can happen. Across the day or even longer periods of time when an autistic high-masking person. It’s just essentially bottling things up and internalizing things. And then at some point, we go pop.

It can look really random what the trigger was for that moment, that meltdown or that shutdown. But. Almost always, it’s an accumulation of challenging things, including a lot of this masking of other stuff going on.

High-masking autistic person might have somebody say something like. Ah, but she didn’t need to make a fuss anymore when her socks felt wrong. So it’s not actually a problem for her. That is probably untrue. She may have internalized the discomfort and felt on edge all day long because her socks felt wrong. Put your hand up in the air. If you’re relating to this one.

When somebody needs a dismissed along the lines of don’t make a fuss. Which kids hear way too often, what we’re teaching them or what they’re learning from the world is that they can’t address the sensory needs in the future. They’re not deserving of having their sensory needs met. And over time, they may ignore their own needs more and more and live in greater and greater discomfort.

Coming back to this idea that a high masking autistic person might be seen as being very sociable. Sure they may really like to interact with other people. They might like to initiate interactions. Absolutely. They also might really like to be in control of that situation of that social dynamic. Maybe they like to interact with kids who are younger than them. Or kids who are more passive and open to their suggestions. And that can lead to real struggles when there’s two people or two children who want to be in charge. They want to make all the decisions or the plate choices for the group. It can be really hard and really dysregulating for the high masking autistic person to understand these social dynamics and to figure out their role in it.

And again, coming back to that dance of interactions, there is an important note to make sure that everybody is feeling included and supported and being able to join in the play in the way that is right for them. But because it’s about different humans coming together, it’s always going to be a challenging dance.

So I really hope that I’m sharing this message here really debunking this idea that autistic equals unsociable. High-masking autistic people might have some things said about them. Like. She has such a passion for jewelry. What could that be? Now? That could be a deep interest, a sensory joy in the lined up shiny patterns. Sorting organizing beads, the feeling of beads between your fingers.

All of that is what might also be called, deep obsessive interests. I see it as a huge positive, no matter what that interest is, but. In this case, it happens to be a socially appropriate interest. I’ve got socially appropriate in inverted commerce. Especially when it’s a girl and it’s something like this kind of interest, like a real crafty type interest. The world just looks at that interest and goes, oh, that’s fine. That’s allowed. If you have an autistic girl who is really, really into monster trucks. I just wonder how will the world respond to her? In an affirming way, the world will say, cool, awesome. You have this interest. Let’s go with it.

In a non affirming way, the world will judge her for having an interest that is not aligned with the societal expectations. Something else that I’ve heard said about a high masking autistic child was, oh, he’s got such great imaginative play.dot, dot. He can’t be autistic. There’s a lot of scales and questionnaires that actually ask about imaginative play. And I feel like they are not very helpful or most of them don’t ask them in a way that actually makes sense. Generally more engagement in imaginative play. Equals less autistic and these assessments. I certainly did engage in a lot of imaginative play as a child.

And I say they seen other kids where some of what looks like imaginative play or pretend play are things like acting out familiar scenes from TV shows. Well processing our own experiences that we’ve already encountered something that we’ve lived through ourselves, reenacting that as part of the process of understanding what happened in that social situation. Because social can be confusing and can be challenging for us.

So this kind of imaginative or pretend play is not actually very creative or unique. It’s wonderful. And it doesn’t need to be changed. It can absolutely be supported. But it’s important to notice that there are different ways. That imaginative play can look or different functions that it serves. And whether or not somebody plays in imaginative ways is not actually correlated with being autistic or not autistic.

And I think that’s something that I hope is changing in the assessment tools. I think the world is starting to understand that it’s just one way, one mode of play that for some people really helpful way of processing the world.

So when we pull all of this together, what do we do with it? What I hope that you take away from this episode is that. We can’t diminish the experience of anyone. Each individual person, whether autistic or not, but each person’s sensory experience is their own to have it is valid and real. Each person’s emotional experience. Each person’s preference, each person’s interest is valid and real and is absolutely appropriate for that individual.

As we raised Neurodivergent kids in a world where their own experience is named and validated and accepted. I really hope that we’re building a future of little humans who have confidence in their own experiences. They should believe themselves. They should trust their own bodies and their own brains.

And because we’re hopefully breeding a world of little Neurodivergent kids who can understand their body and brain. They can, let’s say, read their own signals. They can then advocate for their needs because they both understand what they need and also feel worthy of that support.

That is my hope for the future. I would love to hear your reflections on this topic. And if there’s anything else that you wanted to share, please do hit me up on Instagram at play.learn.chat

before I head off, I put out a question on Instagram for people to share what dismissive or uninformed things people have said to you, if you’re a high masking autistic person or about your high masking autistic kid, and here are some of the things people shared.

Once or a pediatrician for the eight year old daughter and the pediatrician said don’t all people mask and wanted them to explain her so-called masking. That is even dismissive of the experience of masking itself.

And I did touch on this earlier, but I want to highlight it even more here. Masking is effortful and yes, everybody does it to some degree. But thinking about the reasons why somebody does it. And how often we do it. And the emotional toll that it can have on us. That’s where the challenge really lies.

Other things people have heard is I thought you were just OCD. What does that even mean? Just gosh. Uh, it’s just anxiety. There we go. There’s just coming up again. Oh, here’s one. You have a job. So you’re obviously fine in inverted commas. Oh, that is so loaded. Gosh, I think I want to do a whole episode on that one alone. Oh my goodness. But you’re coping so well there’s so much more of that internal versus external experience.

And hearing girls don’t get autism and well, everyone is a little bit autistic. These are really quite dismissive comments that again, I think they diminish the experience, the intensity of what we experience. The frequency and what that can do to our self-concept. It can completely shake us to our core and leave us not knowing who we are, what we need. Let alone feeling valid. That we are deserving of those supports that we finally recognize we might benefit from.

If you’re listening and you are a high masking autistic person, or you think you might be autistic. I wish you the confidence and the bravery to. Recognize what your brain and body and heart wants a needs. And seek that out just a little bit more tomorrow than you did today.

Thank you so much for sharing this space and time with me. Thank you for being open to learning and unlearning and to listening to the perspectives and experiences of Neurodivergent folks.

If you found this episode helpful, please share it with a friend, share a screenshot on Instagram, pop a five star rating and a review in your favorite app. And join me on Instagram and Facebook.

I’m @play.Learn.chat. Have a spectacular day!

 

💬 Get in touch

If you are enquiring about a workshop, webinar, training or a speaking opportunity, I will respond soon. Please note that it can take me a few days to get back to you as I juggle many roles!

If you've registered for a webinar or workshop and can't find confirmation or access information, please check your junk/spam email and add hi@playlearnchat.com to your safe senders/contacts list.

I am not able to provide personalised advice, resource or service requests/recommendations. You can view my resources & links page here, and view therapy services that I've worked with here. Please note that I no longer take on new speech therapy clients.

I am not able to reply to all feedback comments, but I do read them and appreciate you taking the time to share!

Thank you for your understanding!

 

For anything else - please feel free to contact me using the form below