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Distressed Behaviours - a PDAers Perspective
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In this episode, Rachel from the PDA Society speaks with Julia Daunt, an adult PDAer, author and trainer, about the experience and meaning of distressed behaviours.
Drawing on her personal insight and professional experience, Julia explains what distressed behaviours look and feel like from the inside. She discusses the difference between being in control and feeling overwhelmed, and how anxiety, sensory sensitivities and unmet needs can lead to behaviours that are often misunderstood.
Rachel and Julia explore how reframing distressed behaviours through empathy and understanding can support more positive responses from families, schools and professionals. This conversation offers a powerful reminder that what looks challenging from the outside is often an expression of fear, pain or overload.
Key Themes
- Understanding distressed behaviours from a PDA perspective
- The role of anxiety, fear and overwhelm in triggering behaviours
- The importance of empathy and curiosity in response
- Moving away from behaviour management towards emotional safety
- Recognising the difference between control and distress
Deep Diver Subscriber Episode
For those who would like to go further, Part 2, an exclusive “Deep Diver” subscriber episode, will be available through our Training Hub. You can access it here: https://training.pdasociety.org.uk/pda-podcasts/
Disclaimer
The views and opinions expressed by guest speakers in this podcast are their own and do not necessarily reflect those of the PDA Society. While we aim to provide balanced and inclusive discussions, individual experiences and perspectives may vary. The PDA Society is committed to using language and terminology that reflects the preferences of PDA and autistic people, but sometimes our guests may use language and terminology which differs. Appearance on our podcast is not an endorsement of an individual, and not all of our guests will align with our position on the issues discussed.
Further sources of support and information
- PDA Society Training Hub: https://training.pdasociety.org.uk/pda-podcasts/
- PDA Society Website: https://www.pdasociety.org.uk/
- PDA Society Training: https://www.pdasociety.org.uk/support-and-training/training/
- PDA Society Support Service: https://www.pdasociety.org.uk/support-and-training/support/
Guests links:
- Facebook page: https://www.facebook.com/JuliaDauntPDA
- Blog: https://memyselfandpda.com/
Recommended
Transcript
Introduction to PDA Society Podcast
00:00:10
Speaker
Hello and welcome to the PDA Society's podcast. We're here to chat about all things PDA to help you understand what people with this profile of autism are experiencing and how you can help.
00:00:21
Speaker
We'll be sharing research, professional expertise and the insights of people with lived experience to help you understand PDA and have more tools to make life easier. So, whether you're a PDA yourself, a family member, friend or professional trying to make a difference, welcome from everybody at the PDA Society.
00:00:42
Speaker
We hope you'll find this useful.
Understanding Distress Behaviors in PDA
00:00:45
Speaker
Hello, my name is Rachel and I'm your host for this podcast. Today we're going to be delving into the topic of distress behaviours, which I'm sure is close to many of our hearts.
00:00:56
Speaker
Whether you're a PDA yourself, a parent or carer of a PDA-er, I'm sure that you've experienced distress behaviours in some form. Before we begin, i'd just like to warn listeners that we will be discussing themes on the topic of distress behaviours, such as aggression or self-harm, which might be triggering for some.
00:01:15
Speaker
So just to say do look after yourselves and if you need to step away, then please do so.
Guest Introduction: Julia Daunt
00:01:21
Speaker
I'm delighted to be joined by our guest speaker for this week, Julia Daunt. I'll let Julia introduce herself. So welcome Julia.
00:01:29
Speaker
Would you like to say a few world words about yourself? Yeah, hi everyone. um So yeah, as Rachel said, and my name's Julia. I'm an adult PDA-er. um I've also got um diagnoses of ADHD and something called psychotic episodes.
00:01:47
Speaker
And um yeah, I'm i'm here ah this week to talk to you about, as Rachel said, the distressed behaviours. and And yeah, should be good. That's great. Yeah, yeah. Looking forward to it. Okay, let's dig into it then.
Defining Distress Behaviors
00:02:02
Speaker
So I guess just as a start a useful starting point might be and to explain what distressed behaviours are and how would you explain what these are Julia?
00:02:13
Speaker
um Yeah, many and varied. um But to sort of put it in nutshell, it's when a PDIR, in this case, um becomes so overwhelmed either by a demand or demands placed um on them. um It could be that a particular situation is and cause that.
00:02:41
Speaker
It could be ah series of events or demands building up. um And it could also be something sensory related. and that was was the input for the distressed behaviours. And distressed behaviours can be internalised or externalised.
Recovery from Distress Behaviors
00:02:58
Speaker
um So and internalised could take on the form of and almost becoming limp um andrying withdrawal and becoming mute for a time, um that kind of thing.
00:03:17
Speaker
and and and even self-injurious behaviors, so self-harm. And then your more externalized distress behaviors would be where I would fall under, and where you've got maybe fight or flight behavior, I'm both, depending on my mood.
00:03:40
Speaker
um and um maybe lots of shouting, swearing, p crying, throwing things, hurting themselves, hurting others, and that kind of thing. And it's it's it's a very bizarre thing to be in.
00:03:56
Speaker
um because you obviously you feel it coming because you feel the anxiety but there's nothing you can do to stop it and and once you're in it you don't really have any idea what you're doing what you're saying and there's no there's no control um and once you reach that tipping point you just kind of have to go with it and just
00:04:24
Speaker
Yeah. Yeah, go through it. um And then the recovery, I'm finding the older I get, the longer that that's becoming. I think it's the case for everything as you get older, isn't it?
00:04:34
Speaker
That's very true. um But certainly as a child, I could have, you know, very spectacular, as they would call them, meltdown, and where, you know, I trash a room and then be outside playing football in 10 minutes time, you know.
Triggers of Distress Behaviors
00:04:50
Speaker
Yeah. um Whereas as now as an adult, if I if I do have to stress behavior, say 11 o'clock in the morning, that's the whole day for me then. Right. That, you know, it's not I don't recover as quickly.
00:05:03
Speaker
And so and it's an interesting point, I think. So from what you said then, Julia, it changes for you. it's check It seemed to have changed from when you were a child to to as an adult now. It's the format of the distress behaviour. It takes a bit longer for recovery.
00:05:20
Speaker
It does. It does. So um as a child, I could, and you know, have a... you know, a period of distressed behaviour and maybe trash an entire room.
00:05:34
Speaker
and And then, you know, 10 minutes later to be outside playing football and with no ill effects. Well, it' to me, obviously those around me, yes.
00:05:45
Speaker
and But certainly now as an adult, if say I had a distressed behaviour at, you know, 11am, and then that's the whole day. Then emotionally anyway, for me, um is a write-off.
00:05:57
Speaker
ah car yeah I can't get it back, you know. um But I think that's the case, isn't it, with everything as you get older. It does seem to be, doesn't it? Yeah. Everything takes a bit longer to to recover from, doesn't it? Yeah.
00:06:11
Speaker
And you touched briefly then, i just want to dig into it a little bit more, you touched briefly as you were talking earlier about and the causes of distress behaviour. So it's not, it's not, is it often just one thing that might cause a distress behaviour for you to come on or is it that build up? Is it the sort of, you know, the the one thing after another after another and then that distress behaviour appears?
00:06:36
Speaker
More commonly now with me, the build-up isn't so much now because I manage demands on me yes so well that I don't usually get to that point of distressed behaviour now because I've learnt now that I can't do everything on one day.
00:06:57
Speaker
yeah and yeah so um And obviously as an adult I've got much more autonomy than you have as a child So and those two factors mean that those types of distress behaviours are rarer with me now um the ones that i do still have are usually caused by one event or situation um and it can be anything so i had two last week um very short ones i have what i would call i call them because i still at home used to turn meltdown so yeah i had my mini meltdown um which usually they last about sort of three minutes and our um
00:07:41
Speaker
yeah humorous to watch for those watching because they're like, you all right? You know? Okay. And what format does that take then, Julia? So that was that was triggered by um i couldn't get, I would just got out the shower and I couldn't get my legs into my pyjamas.
00:07:57
Speaker
Right. Okay. yeah Because my legs were still wet. Yeah. So that, we all know how that goes. and Oh, yes. And I was getting more and more cross over about 30 second period.
00:08:08
Speaker
And then I just screamed. reading out, you know, really screamed, lots of swearing and I punched the bathroom cupboard. Right, yeah.
00:08:20
Speaker
And then I was all right then, once I'd let that out. And then on the same day, i couldn't unlock the back door because the lock had expanded somehow with the heat.
00:08:31
Speaker
Ah, right, yeah. So one of my things I can't bear is being trapped. And I know I've got a front door that works, and windows that open, but in my head I was trapped.
00:08:45
Speaker
So again, it was the same process of lots of screaming and shouting. And then I, i i well with the palm of my hands, punched the plastic part of the door. thankfully.
00:08:56
Speaker
um yeah And so I have those quite often, okay maybe three or four times a week. And they're usually triggered by something as mundane as that or um receiving an email that I find particularly triggering or, um you know, a letter from the council.
00:09:16
Speaker
an appointment I didn't want to have has come through, a situation didn't go well so maybe I was at the doctor's and it was delayed and that type of stuff um usually triggers
Managing Anxiety with Small Outbursts
00:09:30
Speaker
them. um The more explosive ones as I say tend to be when I'm really overwhelmed by lots of things and And they don't happen as often.
00:09:42
Speaker
ah yeah yeah So there's a positive in there. There is, definitely. And I do find the mini ones actually work very well at regulating, because obviously in that moment, I'm not just angry at having wet legs and pyjamas.
00:09:56
Speaker
You know, everything is coming out in that moment. So and they can be really quite good at ah regulating anxiety in general. Yeah, yeah, yeah. In a weird way.
00:10:08
Speaker
Yes, I but i suppose it did it diffuses some of that anxiety. You're getting it out so that you're preventing that build-up and that layering of other things coming on. So if something else happens a little bit later, you've got a little bit more capacity to deal with it than if you haven't had that.
00:10:23
Speaker
release earlier on. Yeah. Yeah. And I do find if I'm out and about and I've got to hold in that situation, um when I get home, I'm just a mess yeah because I've not been able to do that behaviour in public.
00:10:39
Speaker
oh yes first all um obviously the the larger distress behaviors i can't hide you know if they're if they're going to happen in public they're going to happen in public but the smaller ones are not really conscious but because i don't what i'm going to do when i do them but i don't i don't do any approaches to stop it i just yeah let it we're going to throw the remote control that's fine just do it yeah Yeah, yeah. And it's it's all it sounds like it's almost a bit of a process for you. You know it's coming, so you're going to let it happen but at a lower level to prevent that bigger one. Yeah, yeah. And I so i still remember the first time Paul saw one of those and he he almost sat there, almost like, all right.
00:11:24
Speaker
Yeah. And I'm like, I'm just having, just let me have two or three minutes. And I'll be back again in a minute, you know. yeah yeah But it it is like I've become a different person for that two or three minutes of just like, because I'm normally quite chilled.
00:11:39
Speaker
I do get wound up by things, but I always have humour. yeah So, you know, if we get an unexpected bill, I'll make jokes about, you know, money doesn't grow on trees and you can't get blood from a stone and, yeah you know, those types of things. And I make light it.
00:11:55
Speaker
So I don't normally blow up like that. So in non-PDA life. in non-piaia life Yeah, yeah. you know And it sounds like that sort of thinking about and what's causing those but distress behaviors, it sounds like a lot of it is, and it's to do with that feeling of being trapped or being out of control. Yeah. So what like like with the pajamas, you couldn't get them on. So there's something that you couldn't do.
00:12:25
Speaker
And then physical, couldn't open the door as a physical, actually, I feel trapped and that panic kicks in. Yeah. and And I suppose both of those things are that feeling of being out of control, aren't they? Yeah. And I'm i' sort of taking it further, I suppose, because my polyvagal nerve, like most PDAs, is always ready to go.
00:12:48
Speaker
You know, it's always that heightened. um states, it probably doesn't take much for that because feeling trapped is ah is a basic human instinct. yeah Yeah, yeah.
00:13:00
Speaker
You know, if you corner an animal, they yeah they can turn vicious and bite. Yeah, yeah. like yeah So, you know, you hear about animals, you know, like they're caught in a trap and they play dead until you go to release them.
00:13:15
Speaker
yeah and then they bite your fingers off kind of thing. it's It's ah an inherent reaction. It is, isn't it? It's something that's all within us all, isn't it? We all have those feelings. I think maybe for PDA, is it's just that, as you say, it's triggered quicker and yeah maybe by much, you know, it's sort of by things that might not trigger somebody
Recognizing Escalation of Distress Behaviors
00:13:40
Speaker
else, but it will be more triggering for you.
00:13:42
Speaker
So then it's more heightened, as you say. Yeah. And I can laugh about those, my mini distress behaviours, I can laugh about them because, i mean, it's ridiculous, you know, 42 years old, getting that upset over pyjamas and wet legs.
00:13:55
Speaker
yeah and Especially as there's such a simple resolution to that, which is dry your legs. Yes. you know Yeah, but at the time though, you can't work that out though, can you? and i when at the time, because it's a demand to dry yourself, you see, so that's why didn't do So, you know, but the bigger ones, obviously, I don't usually find humour in them, unless there was a bystander who had ah humorous reaction.
00:14:18
Speaker
Right, yeah. yeah Which is normally, Paul will tell me about somebody's behaviour after. And I find that quite funny. i Yeah, but in the moment, you um you can't find it for humour in the moment. No, no, no, that's fair enough.
00:14:33
Speaker
And we we know for some people, their distressed behaviours don't always come out in the same form. So, you know, i'm in one heightened state, they might self-harm, but in another heightened state, they might run...
00:14:47
Speaker
Do you know a reason why that can be? Why do people have different distressed behaviours? And is there ah it does it feel like there's an element of choice almost over what they do? Or is it just that it just kicks in and whatever feels that that that release will happen at that time and that's the behaviour that comes out?
00:15:07
Speaker
I think it depends what the cause what the cause is o um So if, for example, somebody was in my personal space and wouldn't leave it, yeah and I haven't hit another human being for 30 years at least, probably.
00:15:32
Speaker
I think if I was in the right situation, so cornered, and literally had somebody not backing off, I probably would hit them.
00:15:43
Speaker
Right. and Because, again, I feel trapped. And if you are causing my distressed behaviour and you're not leaving my space and you are literally, say, within a foot of my my space.
00:15:56
Speaker
Yeah. Yeah. then You know, I will lash out more than likely. Yeah. So those type of things, yes. And certainly as a child, I was almost subconsciously but black and white about distressed behaviour. So if a teacher told me do X, y and Z, it would be the teacher that would get the behaviour.
00:16:20
Speaker
And if it was a friend, it would be the friend. If it was my mum, it would be my mum. So it was very, you know, but and it wasn't intentional. It was just, you triggered, you get it. Yeah, yeah. On a subconscious level.
00:16:33
Speaker
Whereas now it's more, um because obviously in the adult world, you've got to pretend quite a lot, haven't you? Oh yes, I like this GP, you're lovely. Yeah.
00:16:44
Speaker
And inside you're like, I really want to slap you, but I can't. we have yeah So you go home and then you have a go at your husband because... Actually saves space, isn't it? but That's how we have to do it, unfortunately.
00:16:59
Speaker
So, you know, there's not... And the behaviour that we experience is different as well. So, as I said, I've not hit another human for like 30 years.
00:17:10
Speaker
But I do throw things regularly. Right. I do a lot of ah lot of shouting, screaming and s swearing. and And not swearing that makes sense. It is literally just swear word after swear word.
00:17:22
Speaker
Yeah. With with no comms. That release. Yeah. just every swear word in a long stream. and Some invented, there have been words invented. I never remember them, but I know that they're there because Paul's laughed.
00:17:38
Speaker
Right. Yeah. But i've I've made combinations of words, sometimes two or three, make a new word. We should really write them down. ah Yeah. but so But mostly, and and there is some self-harm as well. I do um that because i some people don't is some people say that skin picking is not self-harm.
00:17:58
Speaker
Okay. I beg to differ and say yes, it is. Yeah. So I do that. quite regularly. Right, okay. And um mostly now, if it's going to be a bigger distress behaviour, I will flee now.
00:18:18
Speaker
I'm not really anymore. I've given up throwing tables. yeah So say I was in a medical appointment going horribly wrong, I'm more likely to say, you're rubbish.
00:18:31
Speaker
yeah Obviously not quite as polite as that. and and tell them why I think they are. Then all this happens in the space for about 30 seconds. Then I will stand up and leave.
00:18:44
Speaker
can After lots of swearing. And it stick it's to get out of, I suppose, of that situation that's caused new stress, isn't it? It's causing your anxiety to increase. Because in my head, I'm like, if I stay, am I going to throw a table?
00:18:57
Speaker
yeah So yeah before I get to a real crisis point, for me, the tipping point between... sort of not that you can stop it but the course it will take is when I flee so if at that point somebody was to come and grab my arm like you do at school that would be the point that you'd probably get a slap yeah yeah whereas if you might not have done had you have just let me go yeah so I you know for me not there's any blame
00:19:28
Speaker
to sort of share out but I sometimes think it's better sir to let them go yeah because the behavior of fleeing is for a reason we're not doing it because you're boring or we've just had enough it could be a safety thing yeah yeah and for me it is because I don't want to slap the doctor i mean I
00:19:53
Speaker
You know, inwardly I do, but obviously I don't want to. So for me, if somebody was to grab my arm and say, no, you've got to come back, I'd, no. You can't. No, you can't.
00:20:06
Speaker
and And the same as Paul said that, you know, I don't know. I mean, I'd like to think I would never hit him, but you never know. and So for me at that point, that's then when I've lost control once I've left.
00:20:20
Speaker
So then I will cry. we get lots of crying.
00:20:25
Speaker
um So, yeah, crying, and so I suppose in ah in a weird sort way, becoming more internalised once I actually reach that sort of no return point. Yeah.
00:20:38
Speaker
and Because I do the crying and the not talking and or not being able to talk. um And sort of just laying there on the sofa. just Yeah. Yeah. um its shows It sounds like you're having some of that shut down as well then, that you can't communicate with people you're just within yourself almost. Yeah. And i never never had that as a child.
00:20:58
Speaker
Never. I was, you know, throw the table and then play football. Yeah. Yeah. Yeah. yeah um yeah I was... I suppose it's what it's what's it's what is helping you get that anxiety down to a level that you can manage, isn't it?
00:21:14
Speaker
Yeah. And it's that if if it's running away and then crying and by crying, I suppose you're getting your that that is releasing emotion, isn't it? yeah I know it's physically releasing tears, but it's also that helps to release emotion yeah and the anxiety.
00:21:31
Speaker
And then I suppose then you're that some of that self-reflect bit comes back in. That might be when you're just closing yourself off. You can't you don't want to talk. You might not be able to talk because the the brain bit shutting down as well. But it's that not being able to communicate until your anxiety has dropped low enough. Yes. A huge range then for you, isn't that?
00:21:53
Speaker
Yeah, and I'm also processing because I may have, well, I will have an element of embarrassment because yeah that appointment didn't go well. i behaved as I see it inappropriately.
00:22:04
Speaker
no I've, you know, there's that element of failure because I couldn't do it. and It didn't work. Then there's the dread of like, I'm going have to do it again now.
00:22:15
Speaker
Yeah. Yeah, yeah, yeah. yeah um um And just exhaustion.
Support Strategies for Managing Anxiety
00:22:22
Speaker
and Because you can almost hear a commentary in your head when appointments are going like that.
00:22:28
Speaker
And you can almost hear like, sort of word that again that way and I'm going you know right yeah yeah you can almost see it sort of playing out and you're like here we go yeah I suppose and it's almost like you're not focusing on the actual content of what the meeting's about you're too focused on how they're phrasing things and waiting for that tipping point to be reached I suppose aren't you you know it's that yeah it's a tricky one isn't it so Then that sort of, you um you mean, we've touched on it there. That sort of brings up to um the next question really is about what, before you hit that crisis point or those meltdown points, are there any like changes in your body that you can feel when you, got you know, does your doesy stomach get tight? Do you feel you so you yourself, your palms getting sweaty or something like that?
00:23:18
Speaker
The physiological changes, I suppose, is is the question of, of when you can feel that anxiety is getting to the point where you could go into distress behaviours? Sometimes it's quite hard because because i think if PDA is, if we didn't have anxiety generally, think we'd be able to at that point there, we'd be able to pinpoint it.
00:23:40
Speaker
But because we're already anxious, and sometimes quite highly anxious without distressed behaviour. We're just there going along. So sometimes distressed behaviour will shock me. I'm like, whoa.
00:23:56
Speaker
Right, okay. yeah That came out. Where did that come from? Yeah. Yeah, like, all right, you know. And I will actually ask myself after, like, better now? You know?
00:24:07
Speaker
Yeah. Yeah. Didn't see that one coming. Yeah. you know it just So sometimes it's, if you take your eye off the ball of managing your own anxiety, you are left sometimes a bit surprised.
00:24:22
Speaker
yeah ay but But usually there's a, for me, i can feel my anxiety going up at varying speeds. So it will depend on the situation. So something like this, which I enjoy doing, my anxiety is going up, but slowly.
00:24:39
Speaker
Yeah. yeah so So if you'd said to me at the start, well, this is going to be a six hour recording, I would have had to say to you, i need to do it in two parts. Yeah. Yeah. So if I had done it for six hours, very likely my anxiety would be too high to finish.
00:24:56
Speaker
And we'd have to stop because I couldn't, I couldn't cope with that level. So, um, so So sometimes it it can even be like a day out somewhere can end in distress behavior because I've been happy too long.
00:25:12
Speaker
Right. Okay. Does that make sense? Yeah. and Yeah. And the anxiety goes up gradually because I have a lovely day, but it still ends up ticking at the other end.
00:25:23
Speaker
Okay. and and And similarly, it can be if it's a horrible appointment, you know, oh that anxiety will shoot up. And then you can, you know, it's the physical bit you get is just, well, I feel more sick than I feel more ordinarily.
00:25:43
Speaker
Okay. And I get that where you just want to clench your fists and clench your teeth. a like Anger, I think be the word.
00:25:54
Speaker
and And a real... sort of sense of dislike, maybe even hatred for the thing or the person or the situation.
00:26:10
Speaker
yeah um A lot of like, why is why is this happening? Why are they doing this to me? Why is this, you know, sort of anger, that kind of anger. Not anger in, I wish this person didn't exist. Not that sort of thing. But, you know, why are they doing this to me? Kind of anger.
00:26:28
Speaker
um And then, you know, the red mist, basically. and Yeah, the red mist, gums and... And then... the behaviour. All logical Julia has now left the building. you know Yeah.
00:26:44
Speaker
yeah yeah So I suppose, you know, it it i it is difficult then, isn't it it? As you say, I mean, you know, I think for everybody, when we all get anxious and our anxiety is increasing rapidly, if there's if we're in suddenly in a fight-flight situation, but...
00:27:00
Speaker
yeah For people who are not PDA and or who don't have that constant anxiety, then you're starting from a lower point. So maybe that you might notice those triggers a little bit more. yeah yeah But as you say, because you're always in a state of anxiety, actually pinpointing those changes of what's going on for your body and how you feel might not be as recognisable for you.
00:27:28
Speaker
Yeah, and they have to get very obvious because, you know, you're sat there now, you don't feel sick. your hands aren't sweating and well, I'm sorry you're so anxious, but um but if they suddenly started to feel that, you'd be like, oh, my tummy feels funny. and yeah And why are my hands sweaty?
00:27:48
Speaker
And why is my heart racing? And you'll be like, oh, i'm anxiety. Whereas if you're already there, it's got to get really bad. So for me, my biggest marker,
00:28:00
Speaker
that distressed behaviors are coming is proper chest pain rob because I don't ordinarily get that so at the minute I have no chest pain and I and a sore throat I developed flu-like symptoms from very anxious so I quite often will message friends and say i think I've got cold coming and they're like you probably haven't um and I haven't but I will develop a runny nose and a sore throat and it's gone the next morning right and but it's just when I'm so if I feel that or I feel any chest pain then I'm like i need to reduce the arms so they're what I use but obviously that's not
00:28:47
Speaker
you know, not an ideal starting point because I can't go on nausea and I can't go on, no no you know, fidgety because I don't think I've ever sat still in my life.
00:28:57
Speaker
but but Yeah, yeah, that's it, isn't it is it? As you say, when you've got that baseline anxiety anyway, then it's more it's more difficult. Okay, yeah, that's really, that's really helpful. insightful, I think, to be able to share that with people, because that's something I i i haven't thought about that, in that you've constantly got that anxiety, so therefore you don't notice when it's escalating as much. So yeah, that that's great. Thanks, Julia. Okay, so moving on to the next question then.
00:29:24
Speaker
Can you suggest some um support strategies to help prevent a PDA person from reaching the point of distress behaviour?
Personal Strategies and Partner Support
00:29:32
Speaker
So how could how could people around the p yeah yes support ah PDA a PDA to stop them getting to that point of distress behaviour?
00:29:41
Speaker
So first thing to do would be to identify what the PDA's particular triggers are. o So for me, it's anything unexpected or unpleasant that suddenly pops up.
00:29:57
Speaker
um And sensory for me takes a massive role in what I can cope with and what I can't. um so for me i'd need a lot of sensory um things put in place so and need if it was a classroom i'd need it to be kept cool so the blinds down windows open or fans on um and no overhead lighting um as quiet as possible um you know no chairs that it just makes me cringe now but chairs that squeak on the floor oh i know yeah oh
00:30:35
Speaker
Just because obviously when the bell goes, it's like 30 chairs all doing it once. and But you can get little feet things that go on the end, on the foot things that are already there, but they don't work.
00:30:46
Speaker
That mean that they don't, they've got like felt on them. So they're not, but the chair doesn't slide out, so it's safe. But there is there's not that noise because it's normally a rubber foot, isn't it? It's just, oh.
00:30:59
Speaker
so um ah Just begging all teachers listening to this Please put felt on the bottom of the chairs So getting the sensory thing right for me is vital And then because we're not so good at picking up the physical signs You need to be So if your PDA yeah announces at say 2 o'clock every day that they feel sick Why?
00:31:30
Speaker
You know, what is that telling you? What's happening at two o'clock or one o'clock or 12 o'clock that's causing that to come in?
00:31:41
Speaker
um Make sure that they have lots of breaks, either brain breaks or movement breaks. and Same for the adult PDAs. You know, you're supposed to, you know, when you're on your laptop, you're supposed to have 10 minutes every hour or something.
00:31:58
Speaker
Like you do for your eyes, just make sure that you're not doing the same thing for too long. Yeah. and And learning to have downtime in between things.
00:32:13
Speaker
As tempting as it is trying to get everything done on Monday that you can have the other six days to yourself, it would be lovely. um But if you do that, then the six days are going to be horrible.
00:32:26
Speaker
Yeah. So it's actually better to space it out for me anyway. and Yeah. But it's pacing really and just... being mindful of what you're asking and what's going to come up next.
00:32:39
Speaker
You know, is it a good idea to have a written test at school on the same day as sports day? Yeah, probably not. Probably not. um You know, and even, so they even need to join in on sports day?
00:32:54
Speaker
and um You know, one of the children I know hang out with, she's, she's you know neurodiverse herself and absolutely loads and detests anything sporty yeah and will not join in so she's having her first sports day at secondary school and she asked the teacher is there anything else i can do other than do it yeah and the teacher said yes we need somebody to run the tuck shop
00:33:30
Speaker
So she's like, right, I'm doing that. I'm doing it. So yeah she's delighted because she no longer is forced to join in in something that gives her no pleasure. So, you know, there are ways around joining in. So she's still part of Sports Day and may actually now enjoy it.
00:33:49
Speaker
Yeah, but she's got that reasonable adjustment, hasn't she? Exactly, exactly. And that's without a diagnosis. So that's just right that's just a teacher listening to a pupil and saying, actually, you know, and i mean, it may or may not be true that they needed help.
00:34:06
Speaker
You know, tuck shots are normally run by adults, aren't they? So it may have been a ah job created, but it worked. But it works, exactly. and it But they still feel part of sports day. And I... like Yeah. You know, um it sounds like from what you're saying, then it's it's that for people to support you it's that um they need to know they need to know the individual very well don't they they need to know what works for you yeah versus is what might work for someone else like that yeah your friend doesn't like sport or someone else might like sport and actually it's the taking part in the certain events that they might like is what will help to keep them their anxiety lower because they enjoy that particularly exactly exactly
00:34:48
Speaker
Yeah, so that support then is, it' as we say, it's that knowing knowing the PDA very well and as you said earlier, knowing what sensory sensitivities they have, knowing what they like, what they dislike, and that's how we can put support strategies in place to try to prevent it the anxiety getting to the distressed behaviours.
00:35:09
Speaker
So then when a distressed behaviour does happen for you, What sort of things help from the people around you? So, for example, what does Paul do or what does anybody else want your friends do? What do you need them do for you when you're in a distressed behaviour?
00:35:27
Speaker
So when I'm building up to it, when I'm getting... to say for me the first thing that starts happening um quite early on is I'll start forgetting words for things and getting crossed when I'm trying to say a sentence and it just comes out as sort of noise. and Then i will start sort of um
00:35:51
Speaker
almost like then losing my train of thought except I was thinking but you know what mean and and then I start sort of as my mum would call it fiddling with myself so I'll start you know playing with earrings or biting you know the skin around my fingers that kind of thing and so ah at those points I can be distracted right and it's going to sound a bit weird but sometimes Either I'll do it or Paul will, but he'll distract me with something that will make me more cross.
00:36:22
Speaker
Right. Okay. um But something that I can deal with now. So if I'm anxious about something that we can't change and can't fix, ah her then he will he will remind me about that email from the council.
00:36:34
Speaker
Right. Okay. Yeah. So that I've then got somewhere to channel. all that anxiety so I press reply and I'm right, right. Right, okay, yeah, so it's almost like a distraction then.
00:36:46
Speaker
It is a distraction but it's getting the anger out as well. Yeah, yeah. So I will then send that email to the council and it will probably be the best email I've ever written. um Yeah. So that can be good or he'll distract me and with food.
00:37:02
Speaker
He might suddenly sort of bring in the biscuits and say, you know. um Yeah. That kind thing. Or I can distract myself from television or watching cat videos on Facebook.
00:37:16
Speaker
Not that I spend hours doing that every day. and That kind of thing. And then when you get to the sort of, when I begin to start shouting and swearing, the worst things you can do is say things like, you know, calm down, or it's not that bad, or you just need to take a minute, you know.
00:37:34
Speaker
Yeah. Not helpful. and
00:37:39
Speaker
You know, never be dismissive. um no and And also I know we try to say things like, you know, I hear you. But if you say that wrong, that's really patronising.
00:37:52
Speaker
So you need to be good at saying that. and Paul's not very good at saying that phrase. So he will just say, I love you. Which says the same thing, doesn't it? Yeah, exactly. It's that I'm existing. I know you're there.
00:38:09
Speaker
I know you're not okay. and Then when I get to my F off point, as I call it, um which is where I'm fight or flight. So right um I usually use the word or words F off.
00:38:25
Speaker
Because at that point, I've lost the ability now to actually put a sentence together and think rationally. So there's no rational left. Okay. As I always say you know to parents who say, well, I don't like it, but my child swears at me. I'm like, well, yes, it's not nice. um But they are conveying something very important, which is please leave me alone.
00:38:48
Speaker
Yeah, it's communication, isn't it? It is. And if I had in that moment the ability to say, I'm really sorry, Rachel, but I'm finding your behaviour triggering. and I'm not enjoying this appointment.
00:39:01
Speaker
Can I please go home? If I could say that, I would. yeah But in that moment, I can't. So off is just easier. And it can raise everything. So at that point, I will either leave or you'll need to. So it depends. If I leave, let me go. And if I don't, you leave.
00:39:23
Speaker
um So Paul will do that. He'll go upstairs and work up there. um Or I'll go and sit in the car if we're out and about. And... and It's really important that if Paul, because Paul will, because he's so polite, he'll, if we're in ah in an appointment, he'll actually stay behind and apologise.
00:39:45
Speaker
um I know he's doing that. yeah Yeah. That's just how he is. He just, he just has to. So at some point he'll come out to the car, maybe five or 10 minutes later to, you know, we'll go home.
00:39:58
Speaker
But he won't say anything. Yeah. If he's in agreement with me, he might say something like, well, they were rubbish. and And that's a sort of an attempt then to sort of, you know, make me might we laugh.
00:40:15
Speaker
Yeah. So... and so But that's basically, the you know, so I'll either open the floodgates with a load of swearing and shouting and screaming about how rubbish they were, or I'll start crying, or I just won't respond.
00:40:30
Speaker
And he just goes with that. So obviously if I'm laughing and saying how rubbish they were, he'll join in. and And, you know, it's it's about learning what what the responses are.
00:40:46
Speaker
ah given yeah what they need to get back. So obviously if I was to start crying, Paul would know not to start making jokes about how rubbish they were.
00:40:57
Speaker
Because that's not what I need. And and sometimes we just drive home in silence. yeah And it it's just knowing your PDA well enough that you know that when i say when they say F off, they mean it.
00:41:12
Speaker
yeah and And if we're at home and I say that, he won't come back down into the front room until i either text him a gift that says I'm sorry. Yeah, yeah. But, you know, as you say, it comes down to that that relationship that you've got and how well that you know each other. And actually, he knows when to give you space.
00:41:33
Speaker
You know when you need space. You know when you need him to say certain things, as does he. And also, as you've mentioned at the beginning of that, was about you've got certain strategies that you use, whether it be the fidgeting with something or or whatever it might be, when you think, oh, okay, yeah.
00:41:50
Speaker
Yeah, I need to try to bring my anxiety down, which is great. I mean, you know, it really sounds like that between the two of you then that you can manage. Yes, yes those distressed behaviours still might happen, but actually you've got, you naturally can work your way through it and between yourself and Paul, which which is great. It's brilliant.
00:42:10
Speaker
Yeah. And unfortunately, one that you can only really use with adults because, well, you'll know why when I say it, which is another one, I sometimes just disappear. and So not good if you're dealing with a child because you're like, where are they? Yes.
00:42:24
Speaker
and So obviously not for the parents out there, but for the for the adult PDAs. um So I did this once. I don't know why I decided that it would be really good idea to go to Morrison's two days before Christmas in the afternoon to do some shopping.
00:42:42
Speaker
never again no and I'd managed to make it to the till and then I thought I'm going to punch the next person I see so I didn't say anything to Paul I just left yeah and I've got a car key in my bag so I don't even need to ask him for the key so he just arrived 20 minutes later with a trolley load of shopping um but what he didn't do was text me and go where are you Where are you? Yeah, exactly. Because, you know, obviously that you can't do that with a child because, you know, you can't say to your child, you can't say to your child, now listen, it's absolutely fine with money if you feel overwhelmed to just leave so and go to a safe place.
00:43:23
Speaker
It's like, no, that's we can't do that. Unfortunately, I wish we could.
Conclusion and Further Engagement
00:43:27
Speaker
but um But it is a very good... um approach for adults. so Yeah.
00:43:34
Speaker
And because if he'd, if I think at that point, if he'd texted me and said, are you okay? Where are you? I would have got very cross at him being so stupid and not knowing.
00:43:46
Speaker
Yeah. Because they were, I honestly felt like the entire town was in Morrisons at that moment. yeah Yeah. It was just, it was like, you know, you see the photos of Eastbourne Beach in the summer.
00:43:56
Speaker
Yeah. It was like that. it just i know what you mean. Yeah. Yeah. It's just manic, isn't it? Yeah. But, you know, as you say, it's that strategy that works for you. And yeah, well, I think, you know, we're sort of we're coming to the end of this and podcast now, Julia. But I mean, you know, I want to thank you so much because you've shared so much really, really insightful information. I'm you know, I'm sure lots of people and would have been able to get so much from today. So so thank you very much.
00:44:24
Speaker
um And if you want to hear more, and we have a Deeper Die podcast, ah which are available via subscription. If you'd like to um find out more about those, then please do visit the PDA Society website.
00:44:38
Speaker
um I want to thank Julia again for sharing her valuable experiences of distressed behaviours and a really sort of unique insight, and which has been so valuable for me and I'm sure for all of our listeners as well.
00:44:52
Speaker
So if you want to hear more from today's special guest, and then there's a deeper dive version of this podcast ah available on our training hub. And we'll put the link and to this in the show notes. All that's left for me to say is thank you for joining us on the PDA Society's podcast. We hope to and you enjoyed this episode.
00:45:11
Speaker
And if you found it helpful, don't forget to subscribe and share. For more support, resources and information, visit the PDA Society's website. um at www.pdasociety.org.uk and i look forward to seeing you next time thank you so if you want to hear more from today's special guest then there is a longer version of this podcast available over on our training hub sponsors of our training hub make it possible for us to create and put out this podcast for everyone for free
00:45:46
Speaker
As a thank you, they get free access to all recordings and self-guided training on our training hub. Thank you, subscribers, for your generosity. If you'd like to become a subscriber, there's a link in our show notes.