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1. What is autistic masking?
978 Plays2 years ago
Masking is something we all do to project an "acceptable" version of ourselves - but for those of us who are autistic, it can feel like something we do to survive. It's hard for families and friends to spot, let alone educational and medical professions, yet masking can lead to misdiagnosis and burnout so it's vital we all understand it. Our autistic guests Kieran Rose, Dr Amy Pearson and Jodie Smitten explain what masking looks like, why people do it, and how difficult it is to stop.
Music: Aukestra
Editing: Niall Hegarty
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Transcript
Introduction to This is Autism
00:00:03
Speaker
Hello, welcome to This is Autism, a new podcast from the North East Autism Society. Each month we'll be exploring the subjects that really matter to autistic people, their families and the people who care for them.
Exploring Autistic Masking
00:00:18
Speaker
We are really, really privileged in that we do live quite up.
00:00:21
Speaker
authentically autistic life most of the time. But that is a really privileged place to be. For our first episode, we'll be looking at autistic masking, what it is, why people do it and what it looks like.
00:00:38
Speaker
you don't know what's happening and you just assume that you're broken in some way and there's some fault with you and then all that does is then reinforce the masking even further because you feel like there's a need that you know I now have to cover up my brokenness and work even harder not to be broken.
Insights from Experts: Kieran Rose, Dr. Amy Pearson, and Jodie Smitten
00:00:52
Speaker
We have three guests here to help us do that. They've all thought a lot about masking whether that's in relation to their own experiences, their research or their work
00:01:03
Speaker
I'll just introduce them and I'll start with Kieran Rose, who writes and speaks as the autistic advocate. Thank you, Julie. It's lovely to be here. My name is Kieran Rose, as you said, and I'm an autistic advocate. I'm a researcher and consultant and trainer and have been fighting for the rights of autistic people for a number of years now.
00:01:27
Speaker
Hi, I am Dr Amy Pearson. I'm a senior lecturer at the University of Sunderland. I'm also a later identified autistic adult and I have worked previously with the North East Autism Society and also with Cuba, collaborating on various bits of research, which you'll probably hear about today. Thank you. And we also have Jodie Smitten, who is a practitioner who supports autistic children, families and schools. Jodie, would you like to introduce yourself?
00:01:55
Speaker
Yeah, hi, thanks, having us. I'm an autistic ADHD late diagnosed adult, also parent to three neurodivergent children, deliver various different talks and training and support families around the country to advocate for their children's needs, mainly within education. I've also offered some parenting support and just completed my master's in autism
00:02:21
Speaker
with my dissertation focus on masking in autistic children. So my name's Julie.
Understanding Masking: Definitions and Personal Impacts
00:02:28
Speaker
I joined the Northeast Autism Society about a month ago. I have an autistic son who's 25 now. But while he was growing up, we didn't really know about masking. And it's not something I've ever discussed with him until recently. And that's largely through reading.
00:02:47
Speaker
the kind of things that you're writing and blogging about. So for somebody who's perhaps not familiar with the concept or the term, let's start with discussing what is autistic masking? And if I could just ask Amy to start us off on that.
00:03:06
Speaker
So I was hoping you would go to Kieren because I think Kieren has a really great answer for this. But we very much sing from the same hymn book. So masking is, it's a really complex concept. So to kind of break it down to the simplest definition, it is the suppression, either consciously or unconsciously. So you might be aware that you're doing it or not aware that you're doing it. But suppressing or hiding aspects of your identity
00:03:33
Speaker
or amplifying aspects of your identity, which I think Kieran will probably talk about a little bit later on this morning, in order to either pass in social situations as perhaps non-autistic or to make it less likely that people might recognise that you're autistic, or to keep yourself safe and avoid stigma associated with being an autistic person in a majority non-autistic society.
00:04:02
Speaker
Probably the part that I would emphasize, which Amy alluded to is there's a conception at the moment that it's all about hiding being autistic or appearing more neurotypical. We're actually, a lot of my thinking recently has been more about a notion that I call projecting acceptability, where it's about meeting the needs and expectations of the people around you and your mask molding itself to whatever that might look like.
00:04:31
Speaker
Right, okay. So is it something that somebody would do unconsciously or consciously?
00:04:42
Speaker
It developmentally, it's a process that grows as you grow older. So there are aspects of it which start out as conscious decisions and remain conscious throughout your life. There's a surface behavior, but it's a bit like that, that twee analogy of the iceberg. There's much more going on underneath.
00:05:02
Speaker
that are unconscious processes. And it's those ones that are the ones that really kind of need to be picked out because surface behavior, you can change, you can modify, but it's the stuff that's underneath that really needs to be identified. Right. Okay. And Amy, you mentioned somebody wanting to feel safe.
Survival Strategies: Masking and Safety
00:05:24
Speaker
Why would they not feel safe? And why do they need to mask?
00:05:29
Speaker
So one of the things that Kia and I have found recently and some research that we've been doing is that a huge number of autistic people experience victimization across a lifespan. Some of this is classified as childhood bullying, so being picked on by peers, but some of this is really nefarious and personal victimization as well that occurs from people who might classify as friends, family members, or people that we have intimate relationships with.
00:05:56
Speaker
And when victimization occurs within these relationships, it leads to us kind of taking that idea that there must be something negative or bad about who we are and internalizing that. So starting to believe it ourselves, it might not be something that you consciously talk about with other people, but it starts to mold how you think about who you are. And that leads to people then suppressing aspects of themselves in order to avoid further victimization.
00:06:21
Speaker
So thinking about the things that people might have picked on them for or might have abused them for and trying to keep that to a minimum so that other people don't do that in future. So we found in our research that people describe masking as a survival strategy rather than just a social thing. It wasn't just something that allowed them to fit in in social situations. It was something that made them feel like they might be able to maintain some safety when they're interacting with others and avoid further harm.
00:06:50
Speaker
And is it something that you do or that you've noticed your children doing? Is it something that all autistic people do to some extent? Can I just ask Jo do that? Yeah, I mean, it's so complex. Like Amy's already said, there's aspects of masking for me personally that are coming out all of the time that I didn't even realise was there.
00:07:17
Speaker
something that came up just yesterday. I posted on my Facebook page about parenting.
00:07:24
Speaker
and talked about how previously, when I was really masked, I parented in a way, you know, in public, I parented in a way that was much more about other people's perceptions of my parenting than my children's needs. And as I was typing, I was like, Oh, my gosh, is this masking? I was I was masking, because I was concerned about other people's judgments, and then thinking negatively of me or my children. And
00:07:51
Speaker
There's so many aspects. It impacts so many aspects of your life, like every aspect of your life. Do all autistic people mask? I would probably argue yes. I can't obviously speak for everybody. I think there's so much of it that is unconscious. I certainly had no idea that I was masking until I was given the label of what masking is. And that's certainly something that came out
00:08:20
Speaker
Massively, when I spoke to young people, it was that light bulb moment. When they heard about what masking was, when they read about what masking was, when somebody explained what masking was, they were like, oh my gosh, I've been doing that forever. Didn't realize that it wasn't something that everybody did to the level that they did.
00:08:38
Speaker
everybody masks whether autistic or not. Everybody modifies how they appear in social situations and shows different parts of themselves depending on what the context is and who we're interacting with.
Continuous Masking and Self-Suppression
00:08:51
Speaker
So we all monitor our identities, but marginalize people whether they be autistic or black or from another racial ethic minority group.
00:09:02
Speaker
or whether they might be LGBTQIA+, have to hide really core aspects of themselves for different reasons. So it isn't just to switch context and appear more flexible based on our social interactions, but to maintain safety within those social interactions, which I think is really important. We all mask to a degree, but some people are masking different things and things which have more of a kind of a really strong impact on their own identity.
00:09:30
Speaker
Another thing that differentiates it from the kind of average human behavior, the average context switching that Amy's just described there is outside of social situations, the mask carries on as well. So it isn't just a situational thing, although it can be situational aspects of it.
00:09:48
Speaker
When it's something that you do developmentally and it's something that you grow up with, it's something that's with you all the time and it's something that you're doing all the time. And there are even times when you would think that you are in a safe space like at home where maybe you would think you could be more authentic and drop the mask to a degree if you want to use that kind of terminology.
00:10:09
Speaker
But even there, there are elements of yourself that are so suppressed that they don't come forward when you are autistic and your experience, particularly around communication and sensory information and things and the way that you react to sensory information are very not mainstream.
00:10:25
Speaker
So as a child, if you express needs around those things, quite often because other people don't experience those things, it's very easy for them to dismiss them. So you're invalidated. And when that happens on a continuous level, as you grow older, you learn to suppress those things as well, because people don't believe you. And you learn not to listen to your own body as what your body's telling you as well. You kind of lose sight of who you are in that way.
Authenticity vs. Societal Expectations
00:10:49
Speaker
And I'm going to shut up now, because I've one more thing, if you don't want to say something. Okay, I'm going to write notes of what I need you to say.
00:10:54
Speaker
who wanted to stay, so it doesn't get lost. Just going back to what Kieran was saying about when you get into those safe spaces, that you do have a loss of self, so you do continue that sort of unconscious front. But there's also that slightly more conscious thing for me, where even when I'm in safe spaces, actually almost not at all now, but when I'm at home, there would be times where there were those shoulds
00:11:24
Speaker
Well, I should be like this or I shouldn't be like this because of the stigma attached to my authentic self. It was quite a conscious, I shouldn't be presenting like this or I shouldn't be allowing my children to be like this because that's not the outside neurotypical way of being.
00:11:52
Speaker
So it's like a constant internal, I can't think of the word, battle really, between my authentic self and how the outside world expects me to be.
00:12:08
Speaker
And then to follow on what Jodie said, because it's a really excellent point, when you do get to those kind of safer spaces where you can, you know, even when there's Jodie's just really well described there that you're, you know, the goods of shoulds and I should be acting in this way and stuff.
00:12:23
Speaker
There's also much of that safe space time is taken up with thinking about what's happened when you'd not been in the safe space and deconstructing all the conversations that you've had and quite often berating yourself for things that you haven't done or should have done or wish that you had done as well. So there's an element of kind of self-blame there and internalized ableism and all of those kinds of things. And again, it's kind of
00:12:50
Speaker
unless you know that this is a process that's happening for you, unless you've got the vocabulary, the words that we're using now, the way to describe this, you don't know what's happening. And you just assume that you're broken in some way and there's some fault with you. And then all that does is then reinforce the masking even further because you feel like there's a need that, you know, I now have to cover up my brokenness and work even harder not to be broken or to project
00:13:12
Speaker
as Amy was saying earlier, kind of, you know, to exaggerate who you are, because that's the expectation that the other people have of you. So you give them what they want to see. It's, again, it's such a complicated thing. These are human beings, you know, we're the most complex creatures on the planet as Amy likes to remind me quite often.
00:13:35
Speaker
Absolutely. So when you say you're hiding core aspects of yourself, what kind of things, what kind of forms does musking take? So it can be hugely varied. It might be things like, so in the research, what we've seen is that people talk about things like modifying their facial expressions. You know, we don't necessarily express emotion often in the same ways as neurotypical people, or that might not look the same or salient,
00:14:03
Speaker
who might mimic the facial expressions of others, change things like our tone of voice. And that's one of the things that I think often happens very unintentionally. So depending on who you're interacting with, people might mimic the tone of other people, their processes, some kind of the cadence and
00:14:18
Speaker
and how their voice goes up and down within the sentences that they say. And that might happen very reflexively, so starting to mimic how they talk and then talk in a similar fashion. It might be really superficial things like wearing the same clothes that other people wear or pretending to have the same interests or pretending to like the same music.
00:14:39
Speaker
or minimizing how much you talk about your interests. So not, you know, going on a massive monologue about, you know, your favorite TV show or washing machines or whatever it is that you're interested in, that thing that really, really sparks your passion. So those are some of the really kind of, I guess, basic strategies that are often talked about in the literature.
00:15:03
Speaker
But autistic people talk about a huge range of things. So suppressing stims, trying to look really subtle. So, you know, maybe not flapping your hands or moving in, you know, kind of bigger ways, but doing something really subtle, so fidgeting with things or, you know, carrying small toys or items that you move around with.
00:15:24
Speaker
things like not responding to sensory distress. So suppressing that response if there's a really loud noise or a horrible smell or a really bright light, you know, kind of trying to keep yourself really neutral and not responding to that so that people don't realise that you're really distressed, which again links into what Kieran was saying about then starting to ignore your internal signals, which really then starts to impact on how much energy we're able to maintain. So
00:15:52
Speaker
If you are constantly suppressing how you feel and starting to ignore those signs telling you that you're getting distressed, you A, don't recognise that you're getting distressed, but B, spend more energy than you have, which means people start to get really exhausted and potentially experience things like burnout. Thank you.
Children, Masking, and Social Pressures
00:16:12
Speaker
Yeah, that was a long list there. Is there anything, Kieran or Jodie, that you would like to add to that?
00:16:21
Speaker
I suppose I could just add that that completely mirrors the research that I did with young people, children and young people, that it's very much the same. They're taking on that same level of suppression, that same level of stress in a much smaller body. From a really, really young age as I've seen children, while Kieran talks about it, when we've done our masking talk, but I've seen children mask from preschool age, toddler age.
00:16:51
Speaker
So that level of suppression, particularly those internal suppressions, which I think is so often missed. And so, you know, there was there was so much about previous research has been so so much about people hiding their autism that they haven't actually there's not been enough talk about the internal suppression, which got talked about quite a lot by the young people I spoke to in that suppression of internal distress, internal emotions, internal upset.
00:17:21
Speaker
And sometimes that is about the invalidation that they've received before because somebody else hasn't had the same experience as them. And sometimes it's, you know, it also, just so many of us are people pleasers, foreigners and not wanting to be a burden. And that's particularly an issue for young people in schools where they don't
00:17:44
Speaker
they don't want to stand out within a classroom. They don't want to be picked out by the teacher or have to leave the room or, because then that brings on them all sorts of social demands before, what's wrong? Why are you leaving the room? So it just adds to the complexities of it really. Okay, time to take a short break. We'll come back in part two when our guests talk about their own experiences with masking and the effect it has had on their lives.
00:18:19
Speaker
Have you heard about the North East Autism Society's Family Development team? We offer support to autistic people and their families before, during or after diagnosis. We have toddler groups, family workshops, support hubs and home visits. And we also have a private Facebook group you can join called Family Networking, where you can share experiences, tips and support with other families just like you.
00:18:44
Speaker
Find us on Facebook under North East Autism Society Family Networker or on our website at www.ne-es.org.uk. Welcome back to part two. We've talked about what masking is, but what I want to move on now to is why people mask.
Societal Norms and Mental Health Implications
00:19:11
Speaker
I think at the heart of it, it's two important words, which are stigma and invalidation. Firstly, the stigma around behaviours that aren't perceived as normal, shall we say, normal and inverted commas. There's a kind of mainstream idea about how
00:19:32
Speaker
What's socially acceptable? How people should behave? How people should think? How people should feel? You know, it's really hubristic because there's like eight and a half million species on the planet and all of them are completely differently, but yet human beings all have to be exactly the same. You know, so it's completely random, but this is the world that we live in that's created all these kind of social norms and social expectations.
00:19:54
Speaker
So when you are a child and this goes right back to babyhood because autistic babies are a real thing and autistic babies have centuries experiences which we don't see and they obviously can't verbalize and vocalize.
00:20:11
Speaker
So autistic babies experience invalidation pretty much from the beginning around their sensory experiences, because nobody's aware that that's what's happening with them. So their needs are ignored to that extent. And because they can't communicate those needs, then, you know, as they grow older, those needs then get suppressed or so on and so forth. And then as we learn to communicate, because autistic people tend to communicate in very specific ways which are different to non-autistic people,
00:20:38
Speaker
Those communication needs get invalidated over time because you can't talk like that and you can't be direct and you can't be honest because you have to wrap everything up in socially acceptable behaviors and so on and so forth. And then, you know, and then that eats out into really every aspect of our being. We as autistic people, even if we know that we're autistic or not, we're pathologized on every single level of who we are around the way that we eat, the way that we move, the way that we think, the way we speak, the way we, you know, even how we sleep.
00:21:08
Speaker
So everything about our being is critiqued and corrected by the outside world, or at the very least, because that's our experiences, we perceive critiqueness and correction from the outside world as well. So there's kind of two things running concurrently. So as you grow older,
00:21:28
Speaker
You are invalidated on every level of who you are consistently, unless you change your behaviors to meet the expectations of others. And again, you are stigmatized once people know that you're autistic, then there's a whole other level of stigma comes there as well. When people are, you know,
00:21:46
Speaker
view autism as a very negative thing generally and as something which should be overcome and something which should be fixed and you're not normal, you're weird and all of those kind of negative connotations that come with it. So yeah, so effectively that's how we are marginalised and excluded from a society that calls itself inclusive and accepting.
00:22:08
Speaker
Right, and Joji, is that your experience when you're supporting children or with your own children? Yeah, I mean, there's always lots of talk from young people about not wanting to be seen as weird, wanting to be able to make friends. The word weird came up quite a lot in my research.
00:22:32
Speaker
which is an interesting one for me because I think weird is a good thing but clearly not everybody feels that way. So there was lots about that external presentation and that survival needs to be accepted into the majority.
00:22:49
Speaker
But then there was also bits and pieces around the internal state as well. So one young person described that when there was something exciting going on, whether that be at home with the family or in school, that they didn't want those around them to feel disappointed that they weren't enjoying that experience.
00:23:18
Speaker
So they didn't want to upset anybody, they didn't want to feel a burden. So again, it falls into that people pleasing so that they would pretend that they were okay and that they were having a nice time and there'd be a big smile on their face because everybody around them is having a nice time. So they should be having a nice time. So
00:23:39
Speaker
If they outwardly don't look okay, people will say, oh, what's wrong? Are you okay? And they don't have the answers. So it's much, much easier to say I'm fine because if somebody asks you, you're okay, it's a massive social demand when you don't know the answer to that.
00:23:55
Speaker
And sometimes in the work I do is almost, I talk a lot about my own experiences and challenges and experiences that I find overwhelming or distressing because if you live in a world where the majority of people don't have the same experience issue, how are you ever supposed to know what your challenges are? And so young people have this massive blind spot as to how they're feeling and why they're feeling it.
00:24:23
Speaker
And that, again, is linked into the masking. Yeah. Thank you, Kieran.
00:24:29
Speaker
Yeah, Jordy's raised a really, really important point there, which is why masking is so heavily intertwined with poor and negative mental health and mental health outcomes. Because when you have that narrative of, you know, like, everything in my life is a disaster, and people blame me for stuff all the time, and I'm always the one that fought for everything. When you don't have the answer to why you don't feel okay,
00:24:55
Speaker
Because of the way that we have monotropic neurology, it's interest led, and that also means that we problem solve. We look for answers, we connect the dots and come up with the answers. When you don't know why you're not okay and everyone else around you is kind of focused on you as being the problem, the only solution that you can come up with is that you are the problem.
00:25:17
Speaker
that you are therefore, there's something wrong with you. You're broken in some way because everyone else is absolutely fine and you're the one causing all this disruption to everybody else and all these problems and you're the one who's having relationship failures and can't make friends or struggling to be around other people and kind of meet those social expectations. There's a constant internalized narrative there that develops that you're at fault, you're to blame and everything around us reinforces that.
00:25:45
Speaker
everything from the people that are around us to the media representations of autism, the cultural, the research narratives around autism, and not just around autism, because there are narratives that talk around these negative and inverted commons behaviours that don't even use the word autism, but still are applied to us as people who disrupt the social kind of will that, you know, that gets greased by everybody else, but we're the ones sticking a spoke in the world.
00:26:12
Speaker
So, you know, there's a real problematic narrative there of not only self-blame, but that external blame as well, that there's something going wrong with us. And can you imagine the pressure that puts on a child who's growing up, who's trying to figure out who they are in this world, who's developing their sense of identity, and everything around them is telling them that their identity is wrong. And that's what we grow up with. That's the narrative that we have.
00:26:40
Speaker
Can I just ask you all about your own personal experiences of masking? When did you first realise that you were doing it? Has it changed throughout your life?
00:26:56
Speaker
It's a really interesting question. So I, as someone who was only formally diagnosed last year, masking has become something that I've unpicked personally for myself over the past few years. But I very distinctly remember having a discussion while I was at university and saying to a friend of mine once, I think we were standing in the kitchen.
00:27:17
Speaker
And I was like, you know, I feel like as you get older, you don't get any less weird, do you? You just learn how to hide the weird bits of yourself from other people more effectively. And they were like,
00:27:29
Speaker
I've got no idea what you're talking about. And I thought that must be a universal experience that everybody must have just kind of gotten by. And I remember as a teenager, particularly, you know, I as a kid was very weird. And I was really, really into the X-Files. And I used to wear my X-Files t-shirt all of the time. And I would talk about it constantly. And no one seemed to care. That was fine as a really young kid. And when I started secondary school, that's that's when my
00:27:58
Speaker
I found it really hard socially and I kind of got to the point where I was like, right, I need to appear certain way in public in front of other people. I need to appear cheerful. I'll smile all the time because people like people who smile, right? Like people like nice people. So I'll be nice.
00:28:17
Speaker
And that didn't help either. It just made people feel really annoyed because I think they thought I was quite disingenuous. And so from being a teenager, there was a sense that there were bits of myself that I needed to hide. And I remember sitting making a list once of things that I thought might be the thing that annoyed other people about me. So if I could just work out what it was, then I could fix it. I could try and make sure that people didn't see that anymore.
00:28:42
Speaker
And I thought everybody did that. That must be just universal. And they don't. And that's the thing I didn't realize until really the past few years, kind of making sense of realizing that I was autistic.
00:28:58
Speaker
and starting to to unpick my own experiences and Kieran and I have discussed this a lot and something that really helped but was also quite I guess distressing for me was I was doing research around masking and reading about other people's experiences and seeing myself in those experiences it really resonated with me and it was really hard to read but at the same time it was a massive sense of validation there
00:29:26
Speaker
seeing that actually other people did experience that there were other people that were like me. Yeah, that was a really massive shifting point in my own life.
Unmasking Journeys and Parenting
00:29:36
Speaker
Yeah, so similar to Amy, I've been on a sort of a journey of self-discovery and unmasking over the last sort of four or five years. It's been an interesting journey full of chops and changes and ups and downs. And I always describe it as pretty epic.
00:29:55
Speaker
I think for me, I realised that I saw the social camouflaging aspect in that I would see other people that I wanted to be like and look like and I would dress like them.
00:30:12
Speaker
that a really big realization is sort of happened for me and that what I've done is sort of reconnected with a time where I didn't mask. And that was sort of my teenage, interestingly, my teenage years and my uni years where I was really quite eccentric and really expressive through how I dressed. I was very different, but always really just confident about that. And this is who I am, take it or leave it. And actually,
00:30:41
Speaker
my mask really became really sort of strong, I suppose, when I became a parent. I've always had a special interest in child development, attachment, things like that. So and I had my children relatively young, I had my first child at 24. And I wanted to be part of that
00:31:05
Speaker
community. I wanted to be part of the coffee mornings because I was fascinated by babies and watching them grow and develop and I didn't even realise how I was doing that but I was slowly mimicking. It was sort of quite easy for me in some ways because my special interest was in
00:31:28
Speaker
babies and you know that sort of developed like breastfeeding and labour and so that's all that's all these women talk about in these spaces and so in terms of the conversation that was really easy for me but when I look back now on pictures of myself when my children were young I'm like oh my gosh like I'm more I'm cringing because I can clearly see that it wasn't
00:31:54
Speaker
it wasn't me, but it was how I presented myself in order to fit into that space.
00:32:08
Speaker
That was a massive realization for me. I was like, oh my gosh. So I'm sort of, yeah, I'm completely reconnecting with how I was before that period of my life. And have completely different perspectives and views now around child development and attachment and all things like that with the autistic lens. I always say that actually having my children
00:32:37
Speaker
saved me, which sounds really dramatic, but if it wasn't for the identification of my eldest child as being autistic, I don't know at what point I would have recognised myself. And that's a really common pathway actually for lots of autistic adults. Thank you. Kieran, what are your own personal experiences with masking?
00:33:00
Speaker
It's a really hard question. I've had a long, long, long, long time to think about this. I was diagnosed when I was 23, which was 20 years ago. So growing up, my overriding memory growing up was being scared and being in fear and kind of
00:33:23
Speaker
making myself as small as possible. And that was that was a school that was kind of, but also I grew up in very, very real grew up in unique households, but mine was incredibly unique. And so I never really felt safe at home either. So there was I had no real escape route. So I don't think I ever got to the point where I had
00:33:48
Speaker
anything that I recognized that I was masking because masking was my entire way of being. And even as I got older, I'm constantly feeling detached, just kind of living really, really superficially, not able to kind of not even allowing myself to go into great detail on certain things.
00:34:10
Speaker
And I had intense passions around things like science fiction and reading. My bedroom was literally a library. Every wall space was covered in shelves and books. And I lived in that existence, but that very small room was the only room where I felt I could be authentic.
00:34:26
Speaker
but when my being authentic was to lose myself in other universes and other worlds and so being outside of that was terrifying and I knew on a conscious level I knew that I was living this really really superficial life and I constantly would say to myself there must be more to this there's more to me I know there's more to me but
00:34:46
Speaker
I can't ever get to a place where I feel safe enough to kind of explore that and know what that is. Growing up, my friendships looking back now weren't friendships. They were people that I had spent significant amounts of time with because I was stuck in the same classroom as them and went through school years with them and stuff like that. So as I grew into a teenager, I self-medicated through drugs and alcohol. I was on antidepressants as an early teenager because people thought that I was
00:35:17
Speaker
And really what all this was was a suppression of who I was. So once I got my diagnosis, you know, lots of people say now I got my diagnosis and, you know, I started to explore who I was. And, you know, I start to make these realizations about myself. But back then.
00:35:33
Speaker
there were no other autistic people because it was such a long time, no other autistic adults. And apart from Rayman, who, you know, was not relatable at all, and turns out not to be autistic at all. And so, you know, so so I had nothing and it's really interesting what Joly said, I've heard Joly say before about her children saved her life. My first child saved mine. But as a baby, not as someone who was identified a bit later. And because when he came out, we
00:36:00
Speaker
my wife got taken to theatre, and I was left with him in the middle of the night for three hours in a dark room, not knowing what to do with this baby. Nobody came and checked on us. But he didn't cry, he didn't fuss, he just sat and stared at me. And we had this whole conversation with him in my head. And I knew that, how can I be a good father to this child when I'm living this such superficial existence, which then sent me on this trajectory of
00:36:29
Speaker
finding other autistic people, which I'd never actively gone out and sought before, and making then all these self-discoveries about myself through other people's experiences because they were so relatable. It's such a hard thing to put into words, and I've spent the last 10 years writing about this, and I've still not been able to put it in words well enough to kind of... The paper that Amy and I wrote last year is the closest that I've come to being able to kind of encapsulate what I felt.
00:36:58
Speaker
And it still wasn't good enough. And now we're writing a book on it and it's probably still won't be good enough. And, you know, it's so difficult to translate into words how it feels to be so suppressed and to project this version of yourself to other people that looks okay, that people still see as a bit weird and odd.
00:37:18
Speaker
But underneath you are in pain and struggling and wanting to connect with other people and unable to find those connections and just being so fearful of everything.
00:37:32
Speaker
terrifying but also privileged to have gone that because we can sit here and talk about these things now and help other people that are going through those things and parents who have children that are experiencing this who have no idea that this is what is going on with their kids even if they know or think they know what masking is. It's just so deep and it takes us right down to the core of who we are as humans.
00:37:54
Speaker
Thank you. And given your perspective and given the fact Kieran and Jodie, you have neurodivergent children, are you vigilant to signs of masking within them or does it make you treat them differently? What is your approach to your own children and masking? Jodie, if I could start with you there.
00:38:22
Speaker
Because my eldest masked so effectively, for want of a better word, I didn't even recognise that she was autistic initially. I've worked with autistic children since I was 17, but didn't recognise my own daughter. Mainly because the children I'd worked with also had learning disabilities and complex health needs.
00:38:47
Speaker
So my daughter presented very differently. I was able to recognise that when she was sort of at home, she was becoming very distressed.
00:38:59
Speaker
I came in it from a very, I did a psychology degree. So, you know, I went straight down the attachment, trauma, what have I done to my child route, which is actually a really, really common pathway that lots of parents take. They don't consider that the child might be autistic again, which is why talking about masking is so important. I've had so many parents come to me that when I've talked about masking and an autistic masking,
00:39:28
Speaker
it is suddenly like the penny's dropped. Actually, I'd never considered that my child could possibly be autistic. So it opens a whole door. So I recognised that she wasn't okay once home and that there was something going on there from a really, really early age, but it just took me a really long time to put the pieces together.
00:39:54
Speaker
I recognise now when all of my children are masking, my children's masks all look very, very different. One of them is very much that exaggerated version of self. Sometimes one of them will present as being mute.
00:40:14
Speaker
They're all completely different. But I know when my children are masculine and we avoid those situations as much as possible. We live a lifestyle that means that they are as much as possible only with safe people in safe places. My oldest in particular, who
00:40:36
Speaker
was a really effective masker. Being out of school has massively helped with that. And I would say that actually, through support from myself, being out of school accessing neurodivergent led provision and mentoring, they are very unmasked.
00:40:59
Speaker
so much so that like you know when she does little things in certain situations like it just like fills me up like it feels just so so good because I'm like that was very authentic and that was her autistic authentic self and other people might be judging that now and my child probably knows other people are judging that but they've got to the point where like
00:41:25
Speaker
Because this is all normal for us, how we live is normal for us. And so we've normalised so much stuff. But yeah, there are occasions where, you know, these things still happen. But we are really, really privileged in that we do live quite a authentically autistic life most of the time. But that is a, you know, that is a really privileged place to be. Yeah.
00:41:53
Speaker
Kieran, how about you and your children? I think because I kind of really started out my real journey of kind of self-discovery when my eldest was first born, unfortunately they've had to
00:42:15
Speaker
they've had to deal with my learning journey. And so we've been on a bit of a journey together kind of thing. So obviously I have made mistakes with them and stuff like that, as anybody does with their first child anyway, you know, the oldest is usually the most messed up, unfortunately. But, you know, as they've grown older, one of the things that we did from very early on, like that's been autistic.
00:42:40
Speaker
from the moment they were born. All my children have known I am autistic from the moment they were born.
Creating Supportive Environments for Authenticity
00:42:46
Speaker
All of my children, to me, were obviously autistic, so from the moment they came out, even preconception of some things,
00:42:56
Speaker
And we've known and known kind of things have been very obvious to us. So that has changed how we've parented. We have a household where there's no hierarchy, really, you know, mum and dad make decisions about finances and stuff like that, because we're the adults and we earn the money and things like that. But we work as a team, we make decisions together. And we talk about things together.
00:43:21
Speaker
We validate their communication. My youngest, they speak, but they choose to be minimally speaking. So there's lots of different types of communication going on in the household. There's a lot of text communication and drawing and hieroglyphs really. And so there's multiple different levels of communication going on and that's absolutely fine. We sort from a very early age to recognize and understand our individual sensory profiles.
00:43:49
Speaker
And so that, you know, we know that when there's big clashes, that there's a reason for those big clashes. And it isn't just something that needs to develop into an argument about behavior and things like that. So we don't control our children like other parents might not think that they control their children. But there is a huge element of control and parental and child relationships.
00:44:09
Speaker
So we don't control like that. We give our children lots of freedom. And the idea for me is I have four pillars around autistic people and how they should be supported, which are if you validate autonomy, agency, acceptance, you get authenticity.
00:44:26
Speaker
So if you bring those three things in, if you enable your children to have agency over their decisions, to have autonomy about their choices, and so that they can accept themselves and we accept them, so there's a lot of self-understanding, that encourages them to be authentic. Now, my children have, I've got two children in mainstream school. I did have three children in mainstream school, but like Jodie, my youngest is now home educated. And the reason for that is because the oldest two,
00:44:55
Speaker
don't mask as much as they probably would have if we didn't know what was going on, because they are validated at home. So they can go into a school environment, we have good relationships with their teachers and talk to their teachers all the time, and are very firm and strong about the fact that we validate our autistic identities.
00:45:15
Speaker
My youngest cannot be in a school environment because it's just not right for them. They were, they massively had heavily, we recognize them as PDA now. So they need autonomy and you can't have full autonomy in a mainstream school. So they're educated at home where their needs can be met. So it has massively changed how we parent had
00:45:37
Speaker
I not randomly picked up a book by the psychologist from the 1960s, Dr. Spock, and looked at a list of the diagnostic criteria that was in the back of that book when I was 22. I probably not would not be sitting here right now having this conversation with you.
00:45:53
Speaker
because I would be still, if I was even still alive, I would be still heavily masking. I might not even have the relationship that I have. I might not even have children. So, reading, randomly picking up a book and reading that one thing has completely changed the direction of my life and then changed how I parent. I know I will be very different if I didn't understand any of this. And then I know that the pressures and the trauma that I would have been putting, unwittingly putting on my kids, did I not have this knowledge that I have now?
00:46:24
Speaker
Thank you. And what's come across strongly there with Kieran and Jodie is you talked about privilege and sort of joy of discovering or rediscovering your authentic selves. Can I just finish by asking Amy, since you've started to look at yourself, is that something you've found as well? Is there a joy in doing this or a freedom?
00:46:51
Speaker
There's definitely a freedom. I don't know whether I would say I've had the same experience because I think I'm still, there's still a lot of stuff that I'm unpicking and I think I probably will be for quite a long time. I do think I'm very lucky in that I've realised and they've realised as well that the majority of people I know and I'm good friends with are newly divergent.
00:47:13
Speaker
having a real divergent partner. And so around the people I'm very close to, I've been able to be myself, they've been able to be themselves.
00:47:24
Speaker
And so I think there is a joy in being more authentic, but I think learning what your authentic self looks like takes a lot of time and a lot of a lot of introspection, which is really tiring and also kind of boring sometimes, just thinking about yourself a lot. It's not the most fun. So, yeah, I think I've had a bit of a different experience. I'm still on the way. I think it's going to take some time.
00:47:51
Speaker
Thank you, Amy. Yeah, it's a complex process. And thank you all for talking so openly and honestly today.
Episode Conclusion and Teaser for Next Episode
00:48:00
Speaker
In our next episode, we'll talk about how parents and teachers can spot the signs of masking and what they can do to offer support. It's absolutely vital that they do. So join us next time for more insight and advice.
00:48:16
Speaker
In the meantime, why not subscribe to This is Autism so you never miss an episode and leave us a review. You can also follow the North East Autism Society on Facebook, Twitter, Instagram, LinkedIn and TikTok or find us at www.ne-as.org.uk