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2, How do I know my child is masking?
620 Plays2 years ago
Every child and young person is different, but it is possible to spot the signs of autistic masking. Our guests say families should trust their instincts and be prepared to advocate for their child if professionals do not recognise their masking. They also discuss autistic burnout and stereotypes around masking.
Guests: Kieran Rose (The Autistic Advocate), Dr Amy Pearson, Jodie Smitten
Website: https://www.ne-as.org.uk/podcast
Email: [email protected]
Music: Aukestra
Editor: Niall Hegarty
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Transcript
Introduction to 'This is Autism'
00:00:13
Speaker
Hello, welcome to This is Autism, the podcast from the Northeast Autism Society. The process you go through after diagnosis is a reevaluation of your life and a reframing of your life. One of the things we often hear is that person is weird. And there's a connotation there that that's bad, that weirdness is bad, and that being similar to other people is something desirable. And actually, we need to make space for people to be weird.
00:00:38
Speaker
Anecdotally, I hear parents are told that their child can't be masked in because they're a boy. There's no way that they could mask all day. There's no way that they could seem that happy and not be OK.
Monthly Explorations and Masking
00:00:51
Speaker
Each month, we explore subjects that really matter to autistic people, their families and the people who care about them. And our first show last month tackled a huge subject, masking.
00:01:05
Speaker
So we wanted to carry that on and look at how families can spot when somebody is masking and how best they can offer support.
Meet the Experts: Kieran, Amy, and Jodie
00:01:14
Speaker
Our guests to help us unpick this are Kieran Rose, an autistic speaker and campaigner who blogs as the autistic advocate and has three neurodivergent children.
00:01:26
Speaker
Amy Pearson, an autistic psychologist who works at Sunderland University and Jodie Smitten, an independent specialist who works with autistic children in their families and their schools and has autistic children of her own.
Understanding Masking: Recognition and Challenges
00:01:42
Speaker
I'm Julie from the North East Autism Society and I began today by asking Kieran why outside the autistic community we've only just begun to recognise and discuss masking and why it's important that we've finally done so.
00:02:05
Speaker
This is something that the autistic community, like many things that happen within the autistic community, we've been talking about this for 30, 40, 50 years. The narratives that are being described in research now have been discussions that go back decades. It's a really prime example of firstly how the group being researched isn't actually being listened to at all.
00:02:28
Speaker
And the non-autistic people haven't picked up these narratives despite the fact that autistic people have been shouting about them for a very, very long time. So it just goes to show how far research is behind the community that they're actually pronouncing themselves as experts over.
00:02:46
Speaker
Yeah. And public knowledge as well is so far behind. And it's not until we start listening to the autistic community that we learn and understand things like this. Do you think it's important that we've finally starting to catch up there and it is being talked about publicly? Kieran.
00:03:10
Speaker
Yes. Fundamentally, yes.
Impact of Academic Narratives on Society
00:03:16
Speaker
If I think about the experiences that I had at school, autistic children, despite the fact that we have had all these awareness campaigns and the public are more consciously aware of autistic people, although that comes with all the myths and stigma and things like that,
00:03:32
Speaker
that actually nothing really fundamentally has changed because autistic children now are having exactly the same experiences as autistic children had 20, 30, 40, 50, 60 years ago. So it's so, so important that this narrative is
00:03:48
Speaker
Firstly, within academia, because what happens in academia, society follows 10 years, 20 years later, further down the line. We need academia to be looking at these things in order for it to soak out into the media, into culture, and into society. Secondly, on top of that, we need academia to be getting these narratives right.
00:04:09
Speaker
otherwise it creates whole new levels of stigma and myth. And we're starting, we're probably gonna talk about that in a bit. And I know Amy and I and Jodie are very passionate about this, getting this right, that those misconceptions around masking are already out there in the mainstream narrative, in schools, in professional kind of understanding and so on and so forth. So that already we're having to, even though it's a very new academic narrative, we're already having to unpick it because it's going in,
00:04:38
Speaker
very, very mis-conceptualised and mis-perceived directions? Yeah, just to probably emphasise what Ciaran said, but the question about, is it important that we're talking about this stuff?
Misconceptions and Barriers in Masking
00:04:53
Speaker
Masking in particular, I get several emails a day from families who are desperately trying to get their child the support that they need to recover their child from burnout to get their child
00:05:07
Speaker
accurately identified. And masking is a massive hindrance to that with the lack of understanding that's within within schools, a lack of understanding that's within GP surgeries, they're the gatekeepers to identification. And
00:05:26
Speaker
referrals of these children for assessments are constantly being batted back because a lot of the criteria is now that the child has to present as autistic in more than one setting. If you've got a child that's masking in school, masking at Brownie Group, masking at Scouts, masking at wherever they go in and only ever presenting at home, has massive implications on getting that child supported.
00:05:55
Speaker
And then there's a whole other topic that leads on from that around parent blame, which you probably don't have time to go into right now. But we have to be talking about masking. We have to be doing the research. We have to be getting the information into mainstream environments to those gatekeepers because quite literally children's lives depend on it. It's massive.
00:06:23
Speaker
talking about this is absolutely vital because I fundamentally believe that masking is at the heart of the autism narrative, that it is the intersectional core of everything that is related to autism because how we are treated as human beings or sorry, how we are dehumanized as human beings
00:06:45
Speaker
And how we are not treated as human beings is right at the very heart of who we are as autistic people. And it's what impacts most on our identity. And that's really what we're talking about here. We're talking about stigma, marginalization, dehumanization.
00:07:00
Speaker
Trauma, this is really fundamentally what we're speaking about here. And those are things that are given to us. They're not things that exist within
Facing Societal Barriers and the Masking Campaign
00:07:10
Speaker
us. They're not things that we are born with. These are things that are handed to us, again, by a society that deems itself inclusive, but isn't at all. It keeps access to it.
00:07:21
Speaker
Yeah. So you did a campaign a few years back. Is that why, Kieran? Yeah. If I were to do it again, I would do it very differently because I think that some of the narratives that came off weren't advertised strongly. It was called taking the mask off. And the name within itself was a little confusing and misleading because
00:07:45
Speaker
you can't just take your mask off. It was a play on words. It was taking the mask off of autistic masking. That was the kind of narrative behind it. But there are many people who can't be authentic as much as they would like to be and as much as they can try to be because of their multiply marginalised background. So people of colour, people who are queer, people who are
00:08:08
Speaker
visibly autistic, you know, that are treated negatively because they are more visibly autistic. So there are certain groups of people who for whom masking actually is paradoxically saving their lives whilst also harming them. And you know, so so and they don't have any choice in that. So as a as a white
00:08:26
Speaker
middle, effectively kind of late working class, lower middle class working man. I have a lot of privilege in order to be able to say that, you know, I can make safe spaces for myself and I can do certain things in order to minimise my masking. Yeah, Georgie. Yeah, I just wanted to follow on with Kieran's
00:08:47
Speaker
mention of it not being safe to unmask. And I think that's a really, really important point that is often neglected. Because, you know, we talk a lot about masking, you know, and the negative consequences. But it's not safe to unmask, it's not always safe to be your authentic self, you put yourself in really risky positions at
Parental Perspectives and Misunderstandings
00:09:12
Speaker
times. And that
00:09:14
Speaker
No, that comes in all sorts of dimensions, but I think particularly for me coming in at this from a parent of autistic children, an autistic parent of autistic children, but also supporting other parents of autistic children.
00:09:30
Speaker
The systems that sit around keeping our children safe and the systems that sit around protecting our children's mental health or supporting our children's mental health still don't understand autistic experience. So I'll just give a personal example.
00:09:46
Speaker
My child had a social care assessment recently for their EHCP and I had a social worker in the house who was actually fantastic, really taken on board a lot of what I said. I did very diplomatically challenge a few things but towards the end she asked to see my child's bedroom.
00:10:07
Speaker
with his permission and with my permission. And by this point, I felt relatively comfortable with her. So I said, yeah, as long as he's fine with that, that's fine. And she said, oh, I know it's a bit awkward. It's just a tick box. And really, we just have to check that he's got a bed. And I said, well, actually, he does have a bed. But it's actually particularly common for neurodivergent people to sleep on the floor. It's grounded. And I know Christy Forbes has done a brilliant
00:10:35
Speaker
piece on this on her Facebook page. My middle child quite often sleeps not only on the floor, but actually under her bed. If you came in and saw a bed set up under a bed, you would have a particular view about that. I was really, felt really confident and able to unmask in that situation and be really authentic. Actually, yeah, he has a bed, but for us, sleeping on the floor isn't a sign of
00:11:03
Speaker
that had parents in. A lot of parents wouldn't be able to do that. A lot of parents would be in a position where if their child was sleeping on the floor, they would immediately be deemed unfit as parents. And there's loads of examples of this. One of my children doesn't manage clothing. So even in the winter, they will wear minimal clothing. And actually, all last winter, a pair of sandals, unbrushed hair.
00:11:33
Speaker
they, my youngest child is my most probably authentic because we've known that he's autistic from a very young age, he's not been put into the school system. And that's, that's who he is. But I have to be really careful as to where almost where he's seen, if I take him to certain appointments, I have to be really aware that actually, if I take him to an appointment in the December of a pair of sandals on an a pair of pajama shorts and t shirt that's
00:12:03
Speaker
not always the cleanest, that's going to be judged in a very different way to how it actually is. And that's just one sort of small example of how it's not always safe to be authentic. You know, there's loads as Luke Bearden talks about an example of a young person that was being very authentically themselves, I think during a meltdown and then got sectioned.
Autistic Meltdowns and Misconceptions
00:12:30
Speaker
because there was this, you know, there's that massive misunderstanding about autistic meltdowns. And I just- Sorry. Sorry, no, go on. No, sorry, you carry on. I was gonna say you're talking about misconceptions around autism there. You've also mentioned misconceptions about masking. I think Kieran mentioned it as well. What misconceptions do you think there are around masking?
00:13:00
Speaker
Anecdotally, I hear parents are told that their child can't be masked in because they're a boy. There's no way that they could mask all day. There's no way that they could seem that happy and not be okay. I don't know, Kieran and Amy could probably add loads more around this. It's choice.
00:13:27
Speaker
you know, work with lots of children, still working with lots of children who within certain environments are deemed manipulative.
00:13:35
Speaker
And if you are faced with what you believe to be a manipulative child, all you're going to do in that circumstances is push that a little bit harder, challenge them a little bit harder, and it's really damaging. And it's a really horrible thing to be accused of. Like I'm always talking about actually they're not being manipulative, they're keeping themselves safe. There's a massive difference. And again, it's about shifting those narratives.
00:14:01
Speaker
Yeah. And do you ever find if people are masking all day and then when they get home, you know, they might go into meltdown or have, you know, and it's only their parents that see that. Are the parents ever accused of making things up or exaggerating? All the time. I mean, autistic parents are a massive risk of
00:14:29
Speaker
parent blame and FII fabricated and induced illness. And there's research on it. There's Fiona, Gulland-Scott has done some brilliant research on the risk of FII. I covered it in one of my assignments. And actually what was massively frightening and shocking for me is when I read the nice guidelines on fabricated and induced illness, it could very easily describe an autistic child that's masking.
00:14:55
Speaker
You know, it's talk about the symptoms only present around the parent. Just trying to think of some of the others off the top of my head. It was a while ago I did that. The parent being more knowledgeable than the professional. Well, you know, without sounding big headed, I fall into that category quite easily. And when I'm really ranting about my own children, I quite often say that to the professionals that are coming into my home and assessing my children.
00:15:24
Speaker
But equally, autistic parents, we like to do our research. We do go out there and seek answers and problem-solve and join the dots. We can be very in tune and instinctive with our children. We're really passionate about our children, so we can come across as being quite
00:15:52
Speaker
insistent, but I mean, mainly that's because we have to, we have to be shouting loud in order to be heard. And again, that's misjudged. Thank you. Kieran or Amy, is there anything you want to add about misconceptions about masking?
Complexities of Masking and Behavioral Therapy
00:16:09
Speaker
I'll check them here quickly. I think one of the misconceptions that really annoys me, and I know Kieran as well quite a bit, is the idea that
00:16:20
Speaker
Autistic people who have co-occurring learning disabilities or higher support needs don't mask. That if you are always more obviously autistic to other people that you can't mask, then that isn't something that you'd experience. And it's very much not the case. I mean, about a lot of people in particular who've experienced things like forms of behavioral therapy that are focused on minimizing autistic behaviors, what they're doing is teaching people to mask.
00:16:45
Speaker
So you often have people who have been taught to mask and then we're saying those people don't and it makes absolutely no sense. All it does is kind of seek to cause a bit of a discrepancy between what are perceived to be higher functioning people or perceived to be lower functioning people. These really arbitrary, harmful labels and kind of offensive terminology that's used to minimise the experiences of distress regardless of how your autism looks or manifests
00:17:13
Speaker
to other people. So I think that's one of my huge bugbears and everything that Jodie mentioned was spot on. So things like gender. Yeah, it's really infuriating. Kieran, is there anything you'd like to add?
00:17:26
Speaker
Also, there's been the exclusion of other autistic people who people think because of this idea that masking is only about hiding, when in actual fact, this notion of this exaggerated personality and meeting people's expectations
00:17:44
Speaker
When somebody has an expectation that they're going to be treated negatively because that's their previous experience, sometimes all they can do is play into that negativity. Sometimes that might mean being the class clown. Sometimes that might mean presenting with challenging behavior because that's the expectation of how people will see you because that's their previous experience of you. So you play into that and it gets bigger and bigger and bigger.
00:18:10
Speaker
we really need to kind of pick apart this narrative that under the name masking is when itself is a kind of a misnomer because it isn't all about covering up. Sometimes it is about exaggerating. But in a professional narrative, that part of that narrative wouldn't even be recognized as even existing. So you know, so there's so much more work that needs to be done.
00:18:33
Speaker
Thank you. So even though we've started talking about masking, there's a long, long way to go and we need to listen more to the autistic community. We're going to look at now how to spot if your child is masking, if you're a parent or carer or even look into yourself and things that can be done. If I could just start with you, Jodie,
00:19:02
Speaker
How can parents or carers know that their child is masking?
00:19:11
Speaker
I think this is a tricky one because I think it will be different for each child, but I've sort of just jotted down a few notes. So if you've got a child who suddenly changes in their expression and quite often hear parents say, it's as soon as we get to the car, it's as soon as they walk towards me in the playground, it's as soon as we come through the front door that their child will possibly go into meltdown, become really, really distressed. And I've seen it in my own children where
00:19:40
Speaker
I've had this conversation with lots of parents where you know what sort of day your child has by the child that is walking towards you as they leave class. They say goodbye to their friends and then they're walking towards you and their facial expression changes instantly and you know straight away that your child isn't okay. And I think it's really important I say this to a lot of parents, I trust your instincts because if you are an autistic parent of an autistic child and nobody's aware of that and you're not even aware of that, you will have followed some very
00:20:12
Speaker
neurotypical guidebooks around your child and your parenting. That goes against your instincts as an autistic parent to autistic children. We very often end up on a pathway where we are taught not to trust our instincts or that our instincts are wrong. Quite often say to parents, try to go back to your instincts if you can find them.
00:20:39
Speaker
and try to trust them and speak to other autistic people, parents, communities about what you're experiencing with your child to sort of try and seek that validation. But yeah, sudden changes in expression and literally a different child from safe place to non-safe place. I suppose it's really important to point out here is that not all children have a safe place, not all autistic adults have a safe place.
00:21:08
Speaker
And those children will become very internalized, possibly very withdrawn, possibly very not wanting to leave their rooms, and very much like Kieran describes, you know he had, he had his safe haven of his bedroom.
00:21:23
Speaker
So, and actually, you know, looking back to my eldest when she first started school, she would come in from school and just go to her room. And I remember feeling really, I didn't know she was autistic at this point, really feeling like, oh, I've not seen her all day. And now she's just going to her room. She was actually doing that decompress, but didn't recognize that at the time and sort of trying to sort of coax her out a little bit. And but no, but also actually instinctively knowing that she needed that, she needed that downtime.
00:21:54
Speaker
Lots of, I'm going to use inverted commas, so refusal, unable to manage their usual social activities.
00:22:04
Speaker
uh, due to exhaustion. Um, my youngest, when they did spend some time at preschool, the days where they weren't there, um, literally could not move them off the sofa. And this was age three, four, couldn't move them off the sofa. Didn't want to go anywhere, do anything. Just literally needed a screen and the sofa. Um, so you know, you'll see these really high levels of exhaustion in them as well. Uh,
00:22:31
Speaker
I don't know whether Kieran Oren has got anything to add to that. Or it might look like really like exhaustion and like to flip the other way completely so it might be I remember kind of when I was working throughout my 20s literally coming home and collapsing each day at the end of the day and falling asleep until the evening and then getting up and if I could wake up having something to eat like really late because that was kind of you know that was my narrative there so
00:22:57
Speaker
So it can look like it's more like recognizing that there is a different state rather than a different kind of behavior or a different this or a different that. My child is one way at school and then when they're at home they are another way and there is a tangible noticeable difference there.
00:23:16
Speaker
So it's just being really kind of focusing in on those things and even things like dysregulation around sensory stuff as well. So if you find during the holidays that actually there is a difference between their sensory perceptions to while they're at school, so it might be that while they're at school because they're working harder, the noise might cause them more pain or they might struggle with that more or
00:23:41
Speaker
you know or different smells or different tastes or whatever but actually when you get to the holidays because they're slightly more relaxed then those things aren't impacting them on as much they're not dysregulated as much so it's really it's really training yourself to look out for these key differences and kind of and mapping them and keeping a record of those things as well and actually saying like actually here is my evidence for that that there is significant change you're just not recognizing it as significant change because that's not the lens that you're looking through
00:24:09
Speaker
Yeah, Amy. So I just wanted to add thinking about things like routine and regulation. When I spoke to my mum when I was going through the diagnostic process, one of the things she talked about was noticing some of the routines that I set up for myself, so particularly as a teenager.
00:24:25
Speaker
went to sixth form which I absolutely loved. It was a great environment and I thrived there but I was still always really exhausted when I came home at the end of the day and she said she remembered one of the things I would do was come home, get changed, put my headphones in and go straight out for a walk and take myself out by myself.
00:24:43
Speaker
listen to some music decompress and then I would come home I would change into the exact same outfit that I put in every day when I got home from college because you can't wear the same dirty clothes every day to you know socialize other people but you can do that in your own house I would come home put my uniform on and then sit and read and just disengage from everything else and so even though that wasn't maybe as noticeable as as Kieran was saying something like having a meltdown
00:25:09
Speaker
being able to self-regulate might mean that parents aren't necessarily noticing because you've come up with your own problem solving strategies. So just being aware of the kind of strategies that your child might use to decompress or to try and regain some energy at the end of the day, that might be a bit of a cure as to what's going on as well, as well as these kind of maybe more visible signals.
00:25:33
Speaker
Yeah, absolutely. And my son comes home from work, wraps himself in a duvet and watches telly for two hours. And I always used to worry about that. And now I think, well, that's his way of sort of decompressing after the day.
00:25:49
Speaker
Yeah, just following on from what Kieran and Amy said, really, is that I often get called in by parents when a child is masking in school, and I go in and do a discrete observation. And I think recognising that expression change isn't a complete
00:26:13
Speaker
lack of any expression. So schools will say, no, we don't see anything. They're fine when they're here. They're blah, blah, blah, blah, blah. And I'll go in and I'll observe. And it's actually, I think this is possibly linked to double empathy is that I can observe a child who I know that the teacher has told me is absolutely fine. And I can see that they're not fine.
00:26:33
Speaker
So I can see that rather than wrapping themselves up in a duvet they're getting their sleeves and they're wrapping it around their arms or they're fiddling with their fingers underneath the table because on top of the table means that they're going to get told off of fiddling or they are kicking their shoe on and off of their foot or they are
00:26:54
Speaker
I could just keep going on if I could empty my brain more effectively. There are so many ways that the expression can change and it's not always about a complete lack of expression, it's a more discreet stim. Stims are a form of communication and I see a lot of that in school from the changes in how a child communicates. For example, communication is one that we've not really touched on but
00:27:24
Speaker
I mask massively in terms of my forms of communication. Because when I'm at home with my children or with my partner, we don't necessarily use words. We can literally just grunt at each other or make noises at each other. We all know what each other means. Words take a lot of energy for me. I don't believe that they're my first language and I don't believe that they are for my children either.
00:27:53
Speaker
And I had this actually, sorry, going off a slight tangent, I went into a school to do an observation on a child and the child was likely autistic and went up to their TA with their sound covered hands and just made a noise and the TA said to the child, usual words, what is it you're asking me?
00:28:16
Speaker
And this is a child who was really very mute in school, very quiet in school and at home, very bouncy and chatty.
00:28:27
Speaker
And so I said to the TA, you know what what he's communicating to you. So can you not could it would be helpful to him and lessen his anxiety if you accepted that form of communication, you know, he doesn't like having messy hands. So he's probably overwhelmed by that sensation. So using words is going to be really tricky for him at that time. And
00:28:52
Speaker
So actually, accepting that we don't always use words to communicate, but again, because we are able to be verbal, it's expected all the time. I can't remember, I was going back with that, but yeah, going back into schools and doing observations, it's seeing the changes and it is about teachers and schools and other professionals recognising how we communicate and that we don't always communicate.
00:29:21
Speaker
distress, overwhelm, excitement through words. Sometimes it does come out in our stims. And I quite often go back and say, actually, I could see that during maths, the child was actually quite distressed because I could feel it from them and I could recognise that that stim was a distressed stim. Could you just explain what a stim is, if anybody's not heard that term?
00:29:54
Speaker
So it's just a way that we move our bodies, or use our voices, or in order to, I use it a lot to process so I'm sat here, squishing some ink and, you know, I don't know, I don't know, I don't know, I don't know.
00:30:09
Speaker
picking up my skin. Because it helps me process, it helps me make sense of what's in my head and to get it out because words don't come that easy for me. It can be a way to regulate emotions. So it can be a way for us to feel calmer, or even calm excitement as well, because even excitement can feel quite overwhelming. So I quite often rock when I'm not feeling okay. And
00:30:37
Speaker
Yeah, it's an expression or it always has a function for me, whether it's calming or processing, mainly my two functions. And it's really common. I would say all autistic people stim, I think. I mean, all people stim. We just have different, again, we express our stims differently and they're often misjudged.
00:31:05
Speaker
And that's the trouble when where there's this sort of overlap sometimes between masking and double empathy is that these children are still masking, but they are stimming in a way sometimes that would be deemed more socially acceptable. Girls at Twitter with their hair, fiddle with earrings, boys at Twitter with their hair is probably less socially acceptable than girls stimming with their hair.
00:31:34
Speaker
But a lot of people wouldn't necessarily recognise that as a child trying to regulate themselves. Yeah, OK. Kieran, did you want to add something? As an autistic person, surrounded by non-autistic people, as you would generally be as an autistic child in a classroom,
00:31:52
Speaker
all of the people in your class are not experiencing what you're experiencing, including the teacher. So if the teacher's watching you and you are doing exactly what Jodie described, you're expressing your distress in a very suppressed way, and that comes out through like hair fiddling or jigging or fiddling or however that looks, the teacher is not going to see that as an expression of distress.
00:32:18
Speaker
They're not going to see that communication. Jodie can walk into a classroom and she can see that as distress because she has also experienced that distress. So it is, she recognizes that behavior, but there's another level of that as well, that if you look at autistic people for a lens of culture, we have our own body language, which is recognizable and relatable to other autistic people.
00:32:39
Speaker
We have our own ways of communicating which are recognisable and relatable to other autistic people. The way that we exist is recognisable. I can walk down the street and pick out autistic people who probably don't even know that they're autistic themselves. Just by the way that they're moving and holding themselves or how they're communicating, you know, so there is a level of empathy that an autistic professional can have
00:33:01
Speaker
in observing autistic children and being able to see things that a non-autistic professional cannot see. That's not to say that the non-autistic professional isn't good at their jobs, it's just that they have limitations because that's not their experience. And what you've stressed here very much is that it's not just for parents and carers to spot when a child is masking, it's for other professionals like teachers and teaching assistants and the medical profession as well.
00:33:30
Speaker
Absolutely. And it's interesting that you bring that up, because parents might be able to recognise it. But of course, then if professionals don't, again, there's a level of hierarchy and power displacement there, because parents don't have the power to actually do anything, they don't have much control
00:33:46
Speaker
over their children's experiences within school, they're reliant on professionals who don't see the problem in the first place and don't see the problems that they create unwittingly through their privilege and their lack of empathy. So, and lack of training and lack of support and so on and so forth. And this can change. This is really simply changed by
00:34:05
Speaker
better training by better investment in funding and things like that, this can absolutely change. And by promoting autistic professionals to be alongside non-autistic professionals and validating the voices of different marginalised groups. But there's an unwillingness to change because of that privilege and lack of recognising that there is even a problem in the first place. Georgie? I just wanted to sort of bring that back really to
00:34:32
Speaker
what came out of the research that I did, hang on, I'm just looking through my notes, and it's just literally a scrappy bit of paper, and I can't see where I've written it down. But I know anyway. So, you know, just from the voices of young people that are talking about this stuff, in like Kieran's just described, changes in like rocket science, the three themes that came out of
00:35:00
Speaker
of what young people were asking or what young people wanted adults to know about masking or what they wanted to see change was that they want to be listened to. So they want better communication. They want to be involved in the decisions about themselves. And they want empathy.
00:35:23
Speaker
They want, it's literally as simple as that. And while I was having this conversation with one young person and they were so brilliantly articulating this to me, I was sort of started smirking. And then I was like, just to point out, I'm not smirking at you. I'm smirking at the irony, like we're both sat here as two autistic people communicating in this way. And we're saying that actually,
00:35:49
Speaker
what we want from the non-autistic professionals is empathy and better communication, and yet we're the ones deemed not to have that. It actually opened a really nice conversation for me to talk to them about double empathy, at which point I stopped recording because we'd gone off on a massive tangent. But it isn't rocket science. It really is as simple as that.
00:36:17
Speaker
You know, this is coming from autistic young people. It's, it needs to be heard. Did you want to add something Kieran?
00:36:27
Speaker
Brings you back to what I brought up in the first podcast when we started this conversation around kind of the hubris of humanity that we all have to be the same and we all have to adhere to the same social standards, the same behavioral standards. We all have to think and feel in the same way. The expressions of our bodies have to be in exactly the same way. You know, there's nearly eight billion of us. We're not all identical human beings. We're not composite copies of each other.
00:36:54
Speaker
We are all very different and within that there are groups of people who are very, very different from other groups of people in the way that they think and feel and express and so on. And that's nature. That's biodiversity. It's very, very simple. And it's become the paradigm of neurodiversity, which lots of people are talking about and recognizing now.
00:37:14
Speaker
But within an education system, which is framed around conformity, it's framed around teaching everybody in exactly the same way to do exactly the same things and come out at the end of it with exactly the same qualifications. Everything is focused on that perfect human being, that one way of existing.
00:37:37
Speaker
And then you get people who don't fit that narrative, which actually is the majority. There's a very small cohort of people that actually are able to exist perfectly well within a mainstream school setting. And you get people who are neurodivergent or are disabled in some way or have different things going on in their lives or are marginalized from a marginalized group who can't meet that middle of the road kind of need.
00:37:57
Speaker
But they become the problem. They're identified as having deficits. They're identified as having broken bits. And when you talk to lots of professionals about autistic children, it's very much the behavioral lens that they talk through and think through in terms of, well, if we give them social skills training, then they'll act more human. If we give them this, they'll act more human. If they do this, they'll become more human.
00:38:22
Speaker
And it's all about overcoming something which doesn't need to be overcome in the first place. If there was just an acceptance that different people exist and different people have different needs. And that's not to say that there aren't certain groups that are that have disabilities and need extra support. I view being autistic as having a disability. I'm disabled by the barriers that are put in place by society around me. But there are aspects of myself and my being and my neurology which are also disabled and nothing society does is going to change that.
00:38:52
Speaker
Absolutely. And in this kind of context that you've described so well there, how could a parent or a carer broach this with a child and help them? What can they do to help them? Jodie, perhaps.
00:39:13
Speaker
help them recognise their masking. Help them deal with all this or help them relieve the pressure or
00:39:26
Speaker
Oh my gosh, I mean, that's massive. There needs to be so much change and it's not really just possible that puts so much onus on the child to take on the world. As a parent, advocating for your child strongly is really, really important, but equally very difficult.
00:39:53
Speaker
normalizing, you know, giving them that safe space, make sure that at least at home, they have that acceptance that, you know, that you as a parent have that understanding, that curiosity around their presentation, that curiosity, curiosity around the meltdowns and the jittery hyperchild that comes out of school and is like a Tasmanian devil around your house. And
00:40:19
Speaker
you know, and explaining that to them, you know, as a parent, you go on this journey of understanding of your child, you know, you go on these talks, and you, you know, you listen to people and you read books. And that's not always that we're not always great at passing that information on to our children. So we're going on this journey of discovery about them, not with them. And
00:40:43
Speaker
But talking, saying, I can see that you're not feeling good. I always talk about the pace approach, which is designed for trauma children. If you've got a child that masks, there's a level of trauma there. So having that playfulness, that acceptance, that curiosity, that empathy around your child and going on that journey with them,
00:41:09
Speaker
And that would be bespoke to every child, every child communicates differently and has different needs and presents differently. And, you know, starting with that one safe space. And, you know, and the people that you allow into that safe space. And this is a really difficult conversation sometimes for me to have with parents when they're talking about, oh, but grandma comes over and she makes these comments or then
00:41:36
Speaker
this, that and the other and I'm like that person's not safe at the moment for your child because they're actually adding to the trauma and the damage and the self-esteem and all of that, they're not building your child up and they're not supporting you.
00:41:54
Speaker
To the point where I developed a talk, I had so many parents coming to me saying, could you do a session with my mum? Or could you do a session with Aunty so-and-so? Or could you do a session with Granddad or whatever? And I just developed a talk that I was like, here we go, just send them this. And it turns into a bit of a plea because I come in from a parent myself where I'm like, actually, we need you. We need you to be somebody that we can trust with our children and that our child can trust to be safe and accepted around you.
00:42:24
Speaker
And if you have got people in your life that aren't ready to do that or aren't able to do that, then you have to put your child's wellbeing first. And you have to basically avoid them or don't invite them around or don't allow them into your child's safe space. But extending on that, we would love schools to be safe places for all children. Unfortunately, they're not. And we know how difficult it is to advocate for their needs.
00:42:54
Speaker
in those environments that, like Kieran said, aren't set up for anything like this one type of person. Thank you. And Kieran, you wanted to add to that.
00:43:08
Speaker
know, some children don't know not to say it, but then get punished for saying it. And having boundary, all of us as adults have, I would imagine, all of us in this room, I know two people quite well in this room, that we've grown up into adults that actually have really struggled with boundaries with other people and struggled with relationships and
00:43:27
Speaker
cutting people who are harmful to us and who cause us problems out of our lives. And that's because we were never taught as children what good boundaries are and what healthy, respectful boundaries are. We were taught as children, you know, do as your parents say, do as your teachers say, do as this, do as that.
00:43:43
Speaker
we're not bringing up children, we are bringing up people who are going to be adults and we want our adults to have healthy relationships with people, we want our adults to have good mental health, we want our adults to have autonomy and control over their lives and to be able to be authentic not to the point of in
00:44:02
Speaker
pinching on other people's authenticness, but to have respect for other people's boundaries as well and to be whole like that. But we don't do that. That's not what we do. We put boundaries in with children to stop them from doing X, Y and Z. And even when it comes to getting that diagnosis, as parents,
00:44:22
Speaker
It's not our children who are given a diagnosis. We are handed a diagnosis as parents of our children. And then we are expected to go and explain that to our children. Now, I'm fortunately of the privilege where I understand these narratives and can explain it to my children in a way which they can understand and has helped them and supported them. I know Jodie has done exactly the same thing as her children have grown older. And Jodie's understanding has changed around that as well. But so many parents out there
00:44:50
Speaker
only have the myths, only have the stereotypes, only are handed the negativity. And often those myths and stereotypes and negativity conflict with their actual feelings about their children who know that their children aren't the stereotype, know that their children aren't negative and aren't expressing bad behavior and stuff like that, that their children are distressed and dysregulated, but their parents aren't armed with the right information in order to be able to support them properly.
00:45:17
Speaker
and they're not surrounded by professionals who have the knowledge to be able to support the parents and then the children properly. So like Jodi, working with someone else, I've developed a training program for children and for parents, you know, for parents to go through with their kids to a basic version of my kind of big adult course that guides them through the different parts of what it means to be autistic and what people will think about you and how they define you and stuff like that.
00:45:45
Speaker
because nobody's ever done that before, which is absolutely crackers. Why has nobody done anything to support the child? The only support, and I say that word in inverted commas, that's given to children is training for them not to be autistic, is training for them to be an authentic and not have autonomy and agency, but to actually say, you being who you are isn't good enough, we need you to act like all these other people over here.
00:46:11
Speaker
And there's a fundamental flaw in that and how the world is not recognizing this, it pains me because it's so simple and obvious.
00:46:21
Speaker
Thank you. And as you rightly point out, I'm saying, what can parents and carers do? And you're saying, well, the onus isn't, you know, just on them, it's it's society as a whole. So just to wrap up, perhaps Amy, if you could just say, what would you like to see change in a concrete way that might sort of alleviate the kind of things we've been talking about this morning?
00:46:46
Speaker
It's an excellent question and one I think that has a really big answer, not big in terms of long, but big in terms of it's an exponentially huge thing to deal with, which is change the way people approach difference.
00:47:03
Speaker
one of the things that Jodie mentioned earlier on and that we've certainly found in our work is that when we talk about people regardless of whether we know they're autistic or not or kind of neurodivergent or disabled or different, one of the things we often hear is that person is weird.
00:47:19
Speaker
And there's a connotation there that that's bad, that weirdness is bad, and that being similar to other people is something desirable. And actually, we need to make space for people to be weird, for people to act in ways that is different or a little bit strange or unexpected, as long as those people are not actively harming others with the things that they are doing and the ways that they existed in the world.
00:47:44
Speaker
If we make it more acceptable to be weird, it doesn't necessarily matter whether that person has a label or not or a diagnosis, because there is space for them to be themselves and to explore what that means. And I think that we can do, you know, as many educational sessions with people, we can have campaigns about awareness, but actually what we need is not to just go, you know, you shouldn't pick on autistic people or victimise autistic people, exactly.
00:48:11
Speaker
shouldn't victimise anyone for being different. That's not what we need to be doing. And if we do treat people like, it's okay to be you, I think that would go a long way to changing society, which is a huge thing to do. But I think, you know, we can try.
00:48:28
Speaker
Wow, yes, that's a big thought to end on. Thank you, Amy, and thank you all for the expertise and advice that you've shared today. We're going to have a break now. And when we come back, we'll answer some questions that we've had from parents since the last show. Speak soon.
00:48:48
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. Find us on Facebook under North East Autism Society Family Networking.
00:49:18
Speaker
So when the Northeast Autism Society said they were doing a podcast around masking, we got some questions from parents of autistic children who wanted to know certain things about it. So if that's OK, I'll just put these questions to you. The first question we had was from a parent who'd heard about burnout and wanted to know a little bit more about it and how it relates to masking.
00:49:49
Speaker
securing if you could just explain what burnout is.
00:49:53
Speaker
it uses up a huge amount of energy on a day-to-day basis. And if you think about it in terms of a mobile phone battery, when you first get your mobile phone, the battery lasts for hours, you never have to recharge, you can go days without recharging it. And then over time, the more you use it, the more you recharge it, it holds less charge each time you charge it up. Eventually you get to the point where you have to get your phone plugged in all the time in order to keep it running because the battery has just completely burnt itself out.
00:50:21
Speaker
And that's what's happening with autistic people. So it isn't all directly related to masking, you know, it's just existing in the world is hard. But there's this whole other extra layer of work that you are having to do as an autistic person, and also as a disabled person because of the barriers that you hit because of being disabled.
00:50:40
Speaker
the specific barriers that you hit when you are autistic. All of that uses up all of your energy and masking itself, compartmentalizing your brain like that and creating this other conscious version of yourself is huge and it sucks up all your energy reserves. If you think of it in terms of running 100 meters race, everybody's starting from the start line, but you're starting 50 meters behind everybody else.
00:51:04
Speaker
And then the next day, you're starting 75 metres behind everyone else. And then the next day, you're starting 100 metres. So, all that adds up over time. We see small examples of burnout and the things that we're talking about, kids with drawing, getting to the weekend and just burying yourself under a duvet and not having the energy to kind of do anything. And during the school holidays, if we're talking about children, and obviously this relates to adults as well.
00:51:27
Speaker
But then over time, because you never fully recharge, it ends up where you hit this period of what we term as extreme burnout, where...
00:51:35
Speaker
You literally cannot live. It's almost like regression. You lose skills. So the things that you could do yesterday, you can't do today. Your body is tired. You get autoimmune problems. You get problems with your gut. Your ability to communicate can't come out as well. Or you have to communicate in different ways that are less energy usage. You cause energy usage. Your body's interpretation of sensory information becomes more exaggerated. So things become louder.
00:52:05
Speaker
quieter or taste becomes stronger or smells become stronger or you can't smell anything at all. And it's often mistaken for depression because the physical aspects of it and the kind of mental sludge that you feel is mistaken. It looks very much like depression. And at the moment, that's the only professional narrative that there is that you are depressed. So autistic people in burnout are often given children as well, are often given antidepressants and
00:52:31
Speaker
and given CBT and talking therapy and things like that when in actual fact what they need is to withdraw and recharge and you can navigate that through understanding yourself and meeting your own needs and but how many children understand themselves and are unable to meet their own needs or how many parents are unable to meet their children's needs well enough. So yeah so that's what's Burnout Burnout is and masking plays a direct part in that as well.
00:52:57
Speaker
Thanks, Kieran. Is this something, Georgie, that comes up in your conversations much with parents, families? Yeah, I mean, probably about 90% of the young people that I work with are in autistic burnout. You know, it's
00:53:23
Speaker
listening here and talk about it is one thing. Seeing a child in it is quite distressing. It's distressing for everybody. It's distressing for parents, particularly when the support isn't out there or the understanding isn't out there. It's a really dire place for a young person to be, a child to be, and the recovery is long.
00:53:48
Speaker
I work with children who have lost their childhoods to masking and autistic burnout. And I think it's really important that we do discuss it here because people will be coming along and listening to this and hearing about masking, but their child will very much be in burnout because of the masking for long periods of time.
00:54:15
Speaker
it requires a really, really low arousal approach. I describe it as stop the world, I want to get off.
00:54:23
Speaker
literally that child needs to be left and what quite often happens is that when a child presents to mental health services or an adult presents to mental health services and they're in autistic burnout like Kieran said it's looked at as depression so then medications are suggested and CBT and talking therapy and you need to get out a little bit more you need to go for a walk every day
00:54:46
Speaker
And actually all of that, I'm not saying none of that is ever helpful but some of it can be really detrimental to a child that literally just needs to withdraw and recharge.
00:54:56
Speaker
loads of different professionals become involved and you suddenly have people coming to the house and wanting to ask you questions and it can be so so detrimental and actually supporting some young people that recovery can't actually start until everybody's bugged off and left them alone.
00:55:18
Speaker
But again that's really problematic because if you are a parent saying actually I just want you to leave my child alone, you're then refusing services, you're then enabling them. So you end up in this really really difficult position of you know what's right for your child but your ticking boxes because otherwise you're going to be blamed for neglect.
00:55:40
Speaker
It's really, really important. I mean, we could sit here for, you know, the whole time again and talk about autistic burnout between the three of us. And, you know, there's various different resources on my website and Karen's website. And, you know, just just googling autistic burnout and reading blogs from actually autistic people will give you a really, really good insight into where you or your child may be at and what can support them.
00:56:04
Speaker
Right, so if you've got a child who doesn't want to leave the house during the summer holidays, this might be the reason. Yeah, if you've got a child that is refusing, I work with lots of young people who are unable to attend school, often burnout is the point. It could come on really suddenly. I think we've all described it as hitting a brick wall, where a child appears to be
00:56:34
Speaker
turned in along quite well, and then suddenly bam, literally, it can be really, really sudden. It's really frightening. As a parent, it's really frightening for a child who suddenly hasn't got a clue what's going on. They don't know they're autistic, they don't know they're masking, they don't know what any of those things are, and suddenly they're completely unable to function.
00:56:55
Speaker
Could I come on to another question? Somebody asked, does having a diagnosis make a difference to masking? Or does it not have an impact? I'm happy to answer that one. As someone who has only recently been diagnosed. I don't think a diagnosis in itself is the helpful thing. I think knowing that you're autistic,
00:57:21
Speaker
is the helpful thing. It's about having insight into your own identity, why you process and interact with the world in the way that you do, why you experience things differently to other people, why things might be a little bit more challenging sometimes than they are to others.
00:57:40
Speaker
I think having that insight doesn't necessarily come from a diagnosis. We all know at the moment waiting lists are huge for both adults and children. And so it can be years between realizing that you're autistic or thinking that you're autistic and having a professional confirm that. But being able to start to understand yourself. And I think often that comes in that waiting period where you're waiting to interact with a professional, starting to think about your own experiences.
00:58:09
Speaker
behavior and relate that to other autistic people, that's where you start to get that insight and start to learn about your own masking or your own self monitoring and how that manifests. So yeah, knowing that you're autistic, I think is a huge thing in starting to unpack that for yourself. Kieran, you just wanted to add something about the diagnosis there.
00:58:32
Speaker
The process you go through after diagnosis is a reevaluation of your life and a reframing of your life and actually learning to accept for many people that they weren't at fault when they had perceived themselves as being at fault and that lots of problems in their lives may have been resolved or not had happened had they received that identification earlier and had they known and had other people known.
00:58:57
Speaker
So there's a lot of kind of things that you have to kind of look at and pick apart and readdress. And that process itself of looking at traumatic experiences can also be traumatic. So it's quite common that people that get that diagnosis go through that period of burnout.
00:59:12
Speaker
And from the outside looking in and hear this so often from kind of partners and parents and kind of friends and family members that, you know, like, well, you didn't act that way before now, you know, you know, you're autistic, you're just acting artistically, and all of a sudden you change your whole personality and stuff like that. But actually what's happened is that that process of burnout post-recognition causes your mask to fall apart.
00:59:37
Speaker
you can't sustain it anymore because it's seen itself in the mirror, which the mask is designed for you not to see as well as anybody else to see. So once that starts to crack and fall apart, your authentic self starts to come out a little bit more, your burnt out self will appear a little bit more and burnout basically for autistic people is being unable to sustain masking. That's really fundamentally what it is. It's being able not being able anymore to cover up
01:00:02
Speaker
kind of who we are or what our needs are and what our distress is and what our trauma is. So yeah, so it's just, it's really important that people recognize that, that there isn't a sudden great personality shift, that the person's exactly the same person as they were before, but they might start stimming more, they might start being more obviously autistic in some way, because basically their mask has cracked and fallen to pieces. And it isn't that they've been deceiving you, it's just been that they've suppressed their entire life and all of a sudden now they cannot suppress any longer.
01:00:32
Speaker
It's a very complex interplay of things, isn't it? We've had a variety of questions around, and I know we've covered this, but if we could kind of just do a recap, how do I recognise masking behaviours in my child and what's the best way, somebody says to support my child, somebody else says, how do I help them to unmask?
01:00:56
Speaker
The best way to support all of this is to engender authenticity in them and that comes from validating their experiences, helping them to understand who they are, what their needs are and the things that they will need to be able to
01:01:13
Speaker
get through day to day life. Also, helping them understand that people will treat them negatively. And that isn't always deliberate. Sometimes it will be deliberate. But it's because there is a massive misperception of what autism is out there. The child themselves might feel stigmatized towards the label.
01:01:34
Speaker
and towards their own experiences and their own experiences of being different. So, you know, you can't force a child not to feel that way, but you can validate their experiences and help them to understand that. And basically at home, you need to create a safer place as possible for them, where their needs are being met, where their sensory profiles are understood, where, you know, where the trauma is recognized and talked about.
01:01:58
Speaker
And something that we do all the time with our children is that we don't hide them from things. If there are events going on in the world, we will talk about them. The narratives around how trans people are being talked about at the moment is a big topic of conversation in our house. And I have a nine year old and a 12 year old and a 13 year old. So, you know, these are these are children being
01:02:22
Speaker
you know we're having discussions adult discussions what would be perceived as adult discussions about really complex topics but they're important topics because they're important to my children and they're important to me and they're a part of our narrative and part of recognizing what's going on in the world and why people think the way that they do
01:02:40
Speaker
and lots of parents shy away from those difficult topics because we want to protect our children and yeah obviously we don't talk about graphic and gruesome things but we sometimes do and when the conversations get there but but you know it's about being open and honest and removing that hierarchy
01:02:56
Speaker
We can only control that at home, though. We can't control what the rest of the world does, so we have to empower our children to be able to create safe spaces for themselves and be as authentic as they can and have as much control and autonomy and agency over their lives in order to be able to go out there. I'm a privileged 43-year-old, nearly, who
01:03:18
Speaker
You know, I create my own safe spaces. I choose who I work with. I'm self-employed. I go where I want and I do what I want and I engage with who I want. But children don't have that much element of control over their lives. So we have to empower them as best we can so that when they do start to get control, they're ready to take it and they're ready to own it and they're ready to have those boundaries with people that we talked about.
01:03:41
Speaker
So that wraps up our two shows on masking. If you've got any questions or comments about anything you've heard, get in touch with us at info at any-as.org.uk.
01:03:58
Speaker
In our next episode, we'll talk about sex and relationships. That's at the end of November, so join us then. In the meantime, why not subscribe to This Is Autism on Apple Podcasts, Google or Spotify, so you never miss an episode. And leave us a review and rate us.
01:04:18
Speaker
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 Bye for now.