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Ep. 5: Autistic Pathological Demand Avoidance: Insights for the Criminal Justice System
597 Plays18 days ago
In this episode, we hear from Dr Rachel Worthington, a forensic psychologist, chartered scientist and senior lecturer at Manchester Metropolitan University. Rachel has spent years working with autistic people in forensic settings and recently led two ground breaking studies into the experiences of autistic people with a PDA profile within the criminal justice system.
Rachel shares why she carried out this research, what she discovered, and what changes are needed to make criminal justice environments safer and more supportive. We explore the barriers autistic PDAers face in courts, prisons, youth justice and forensic hospitals, as well as the misunderstandings that can escalate situations and lead to further trauma.
With honesty and clarity, Rachel explains the study findings - from the heightened fear response PDAers experience when demands are enforced, to the lack of training among professionals - and offers recommendations for trauma-informed practice, better understanding, and multidisciplinary support.
As noted by participants in this study, aggression or violence is never acceptable and no single factor (such as Autism/PDA) causes an individual to engage in aggression or violence. Rather multiple biopsychosocial factors may contribute towards this and any assessment of the causes or contributing factors for violence and/or aggression in legal and forensic settings should be undertaken by registered health professionals with extensive training and experience of supporting both AuPDA individuals and forensic clients.
Deep Diver Subscriber Episodes - For those who’d like to go further, a exclusive “Deep Diver” subscriber episodes are available through our Training Hub. You can access them here: https://training.pdasociety.org.uk/pda-podcasts/
Trigger warning: This episode discusses experiences of trauma and contact with the criminal justice system, which some listeners may find distressing. If you are affected by any of the issues raised, you can reach out to our Support Service for information and guidance.
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/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/
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Transcript
Introduction to PDA Society Podcast
00:00:02
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.
Purpose and Themes of the Podcast
00:00:13
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 or yourself, a family member, friend or professional trying to make a difference, welcome from everybody at the PDA Society.
00:00:34
Speaker
We hope you'll find this useful. Before we begin, i do need to warn listeners that we will be discussing themes, um things like distressed behaviours that make of a self injury and violence.
00:00:46
Speaker
and also the fact that many PDAs can be misunderstood and some of the injustice that that can bring. So please do look after yourself and step away if you need to.
Meet Dr. Worthington: Forensic Psychologist
00:00:57
Speaker
So hello everybody and welcome to today's podcast. I'm delighted to be joined by Dr. Rachel Worthington, who is an HCPC registered forensic psychologist and a full member of the division of forensic psychology, including holding associate fellow status.
00:01:13
Speaker
um She's also a chartered scientist and is a senior lecturer at Manchester Metropolitan University. So thank you so much, Rachel, for joining us today. and Would you like to say a few words about the purpose of um what we're hoping to achieve during today's podcast?
00:01:28
Speaker
Yes, of course. Thank you for having me. So and today I'm hoping that we'll be able to discuss the findings of two pieces of research that we did um looking at and autistic pathological demand avoidance ah that people's experiences in the criminal justice system um and and make some recommendations and for how people might be supported in those settings.
00:01:49
Speaker
Lovely. So what was it in the first place that really motivated you to carry out this piece of research?
Research Motivation and Experience
00:01:56
Speaker
um So I've worked with autistic clients for many years. and I trained as a forensic psychologist and ah around about 20 years ago, and I've worked with clients with a range of different difficulties.
00:02:06
Speaker
and But particularly more recently in my career, i worked with autistic individuals um and really looking at um how that might present um in terms of aggression in forensic settings.
00:02:17
Speaker
So I undertook some sort of work with clients. I saw some of the differences, perhaps, that some of those clients might present with. and And I trained some forensic psychologists at the Division of Forensic Psychology in and pathological demand avoidance to help them to understand how that might present ah in around about 2021.
00:02:35
Speaker
and But I'd also as part of my PhD, which is like a doctorate, that's why I'm a doctor of psychology. um I'd done work with staff as well in forensic settings. So I suppose I was conscious of both the ways in which individuals present, but also the ways that staff might struggle to understand some of the functions of of people's behavior and what that might feel like for them.
00:02:58
Speaker
and So as part of the work that I'd done, I'd written some book chapters and articles on understanding aggression through an autistic lens, um as well as considering family members and carers and that surround those individuals as well.
00:03:11
Speaker
and So I think those things are really, really important. and And I was really fortunate to be approached by the PDA Society, and who were doing some training at the time about how they might support people with PDA in forensic settings.
00:03:23
Speaker
and And I was really keen to be involved and hope that the combination of that sort of practitioner and psychologist, as well as my academic experience, might be able to provide a lens, I suppose, through which people's voices could be heard and understood and so that we could really think about and the ways that people might be supported.
Barriers in the Criminal Justice System
00:03:43
Speaker
I suppose I'm conscious that and there's there's evidence that suggests autistic individuals might face a range of barriers to effective participation participation in the criminal justice system. um But there's a need generally to establish what some of those barriers are generally for autistic defendants and and people accused in those systems.
00:04:03
Speaker
But there were no studies at all looking specifically um about what that might be for within the context of autistic individuals with PDA. So I felt hopefully that some of my experience and and some of that knowledge and might be able to provide, like i said, a lens through which we could hear people's experiences and think about how they could be supported in the future.
00:04:24
Speaker
Yeah, absolutely. And, you know, one of the things about PDA is that, you know, OK, it's a profile on the autism spectrum. But you and I know and families that we support at the science society know that the, you know, the classic autism strategies just make things worse for PDA. So, you know, I'm sure for families, this will be, you know, some research that they're so interested in. So um can we start off talking about the study design, that sort of the number of people that you interviewed and sort of thing?
Research Methodology and Findings
00:04:53
Speaker
Yes, of course. So there were two studies. and The first study, and we conducted interviews with 18 individuals. um Just to be clear, all the individuals that we interviewed had a diagnosis of autism as well as PDA and additional features. So I know that there can be difficulties, I suppose, in terms of historical perceptions around PDA and and and the diagnostic categories and those things.
00:05:18
Speaker
and But just so the listeners are clear, all of the participants in our study had a diagnosis of autism and they also had and and PDA features as well. So there were 18 individuals that took part.
00:05:31
Speaker
um and that That was a combination of people with who'd been involved with in the criminal justice system um themselves, um as well as maybe and their family members and or their children um who were obviously unable to to participate and due to their difficulties.
00:05:47
Speaker
But the study related to 21 individuals, as sometimes the parent might have also had and autism and PDA as well as their child. So there were 21 people and that our study related to.
00:06:01
Speaker
and As I said, they all had a formal diagnosis of autism. They were that related to 14 males and seven females. um And they'd had contact with the criminal justice system in terms of things like prison, secure forensic hospitals, and the courts, the youth justice system and the police.
00:06:18
Speaker
So the study was advertised on social media um as well as the PDA Society website. And people took part it in based on those and ah sort of interviews.
00:06:29
Speaker
The interviews, we were and very lucky that the participants really gave us very rich experiences. and very, very in-depth interviews. and And the interviews range from sort of an hour um to over an hour and a half, sometimes nearly two hours. So and we were really grateful that people provided their time for us to hear their voice.
00:06:50
Speaker
The second study was 32 participants who'd worked in the criminal justice system. This was appt advertised via an online survey and where people filled in the questionnaires online.
00:07:01
Speaker
um So this was slightly different. It wasn't interviews with people. It was anonymous questionnaires online. um And the reason for that was to improve people's potential capacity to participate.
00:07:12
Speaker
And we know that it's difficult for people involved in the criminal justice system to have the time for interviews, but also to get organizational consent to participate in things like that. So sometimes anonymity can be easier and for accessing professionals sort of in those systems.
00:07:28
Speaker
um So like I said, that was 32 participants, which um is a good um sample size for the type of analysis that we did, which was and thematic analysis, looking at the themes across and both studies.
00:07:41
Speaker
and But obviously that's quite, 32 is quite limited in terms of the number um of people working in the criminal justice system as a whole. so and So it's worth bearing in mind that um it's a it's ah a nice sample size for for this type of analysis that we've done and but it is constrained in that sense and and I think it's always important before we present the findings and to just be really honest about and some of the constraints of research sometimes we only present those at the end and and then that can people might not hold that in mind as they're hearing the findings so and I always try to bear those in mind at the beginning and and remind people so
00:08:17
Speaker
And as I said, there were the number of criminal justice professionals was in in the study was quite small in comparison to to those that work in it as a whole. and And obviously, we have to remember that obviously the study was advertised on the PDA Society platforms and that might have biased some of the responses from participants.
00:08:35
Speaker
and who already had some knowledge about PDA. and But also we need to bear in mind that and the participants um with autism and PDA are obviously self-selected as well.
00:08:48
Speaker
and And their experiences are obviously very valuable and that is their voice and that's their lived experience. and But there might be other people who've had different experiences that didn't participate in the study. So and we could and we we need to be hold that in mind, I suppose, when we're generalizing findings and to just kind of bear that in mind that sometimes people who choose to participate in studies sometimes have more of the extreme views, I suppose, or extreme experiences and in terms. And that's why they're keen to have their voices heard.
00:09:20
Speaker
and So we were very lucky to hear those voices. And it's just worth worth bearing in mind that other people may have had different experiences. Yeah, lovely. Thanks for that transparency.
00:09:30
Speaker
So you mentioned that you got lots and lots of rich data. um How did you analyze all that data afterwards after the interviews? So we use what's called thematic analysis, um and that's a method of really analyzing what we call qualitative research, so not questionnaires, really thinking about the types of themes that come together, the the common things that you might hear across participants that and tell a story about their sort of lived experiences.
00:10:01
Speaker
and So that's how we we followed the kind of process for that. There's a particular way of doing that. and And it's a kind of six stage process where you really become familiar with the data and really listen to the stories that people are telling you and then begin to think kind of what are the common themes that perhaps and come from people's experiences to to be able to explain their story.
00:10:26
Speaker
hu OK. um And then this is that I'm excited about what were your findings?
Challenges in Professional Recognition
00:10:32
Speaker
OK, so we are the aims of our study were and were quite a few, I suppose. The first one was to think about in what way and but PDA might contribute towards being at risk of being involved in the criminal justice system in the first place.
00:10:47
Speaker
um And we found there were six themes that came from from that question. The first one related to differences in the way that autistic people with PDA presented.
00:10:59
Speaker
And what we found was that the resulted in them being and not being believed by professionals that they were autistic. And we found that that disbelief contributed towards an exacerbation of their difficulties.
00:11:09
Speaker
And really, that was because professionals responded with an increased control rather than compassion. So participants really described how they've been openly told by people you're not autistic. Like I said, even though all of them had a diagnosis of autism, which was and that was formally diagnosed by NHS professionals.
00:11:26
Speaker
And they talked about how part of the difficulty was the kind of stereotypes, I suppose, about how people thought autism may present. And they talked a lot about obviously we've been really lucky that and not the people, organizations like the National Autistic Society have done a wonderful pieces of work highlighting people's awareness of autism and and and and some of the difficulties that presents for people.
00:11:50
Speaker
But the participants in this study and felt that perhaps the PDA sort of profile meant that the symptoms presented in quite a different way. They talked about how they were told that they didn't have autism because they had normal eye contact and and or lots of friends.
00:12:04
Speaker
um And one of the ways that they talked about they presented was with this sort of adopting more sophisticated strategies to try and avoid these fears demands, having this sort of Einstein intelligence, I think was one of the phrase one of them used.
00:12:19
Speaker
and this ability to really read a room and using this sort of learned strategies to be able to look in a room and spot everything. But the function of that was about being able to spot anything that might be a perceived threat.
00:12:34
Speaker
But that because of those difficulties that sometimes meant that professionals didn't believe that perhaps that person had autism. And instead, the the person might try and use really sophisticated strategies to avoid demands.
00:12:48
Speaker
Reading the room, try and mirror things that other people do when they don't want to do something, perhaps being friendly or using humour or flattery. But these were sort of really learned strategies the person had used and attempts to kind of mask some of their difficulties.
00:13:04
Speaker
But the way this was was received by professionals was that they could be manipulative and or that and ah they were sort of using. um Sometimes they might use intellectual challenge and to kind of burrow down on an argument that perhaps they might use flattery to avoid a demand. And if that didn't work, they might use intellectual challenge to kind of ah burrow down on an argument, as somebody said.
00:13:28
Speaker
And because of those more intricate kind of and ah skills that that person might use, professionals of are often felt that that as a result, they didn't believe that that the person was autistic.
00:13:40
Speaker
And instead, they used words like manipulative to describe them. And because they perceived them in that way, this often led them to professionals adopting a more kind of a increased demands upon upon the person, a lack of empathy or compassion.
00:13:55
Speaker
They weren't connecting with the difficulties that that person was experiencing. And instead, they adopted a more controlling response and to sort of demand that the person should do what they were asking.
00:14:07
Speaker
And this meant that these sort of demands then kind of escalated and and and that resulted in increased involvement in the criminal justice system. So that sort of reciprocal role was something that we saw in the first theme.
00:14:22
Speaker
The second thing we saw is that when this sort of intense terror was paired then with being sort of forced to engage in a demand, and this resulted in much more severe physiological sort of fight or flight responses, and which then escalated the likelihood of an involvement with the the criminal justice system.
00:14:41
Speaker
So one of the things that participants talked about is they might start by using humour or flattery or and more socially skilled and ah social skills to avoid demands when those weren't successful the intellectual challenge might kick in.
00:14:57
Speaker
And when that wasn't successful, that's when the person became to feel a real sense of terror. And what they described is that at that point, their kind of moral compass might sort of shut down so that the person might become violent towards people that they liked as well as people they might not like, family members, and people that that were close to them.
00:15:17
Speaker
and But it was about that absolute fear and desperation um to the point that and what they described as it being physically palpable. so that you could physiologically see that person's terror um in their body.
00:15:31
Speaker
And they gave examples of you know how really young children, are often sometimes primary school age, might present with this physical energy ah that terrified sometimes criminal justice system and ah professionals, perhaps police wishing to taser them because they were so terrified.
00:15:48
Speaker
and and And you've asked their numbers of criminal justice system, people kind of feeling that they needed backup, I suppose, because the extent at which this physiological and terror and was presenting could could really frighten them.
00:16:03
Speaker
And they described that as being almost more like a rampage from the individual. um And obviously, when the criminal justice system person with them was terrified as well, and they then attempted to exert even more control and in in a kind of escalation to that response.
00:16:18
Speaker
and So what people talked about is very quickly, this kind of situation could escalate incredibly quickly and because of that level of terror. um And then suddenly lots of people would be involved. Lots of people would be then telling that person what to do.
00:16:32
Speaker
And then that that individual might try to run away. They have absolute desperate just sort of need to escape the situation. They might, but for example, run into cars.
00:16:43
Speaker
And then suddenly you've got the police, the ambulance and the fire brigade involved. And so they described how things could suddenly escalate very, very quickly because of the intense way in which this physiological sort of response was really palpable.
00:16:58
Speaker
The third thing we found was that and we found that participants said how much they kind of struggled with masking. And when that was heightened with um morality and loyalty, ah what we found was that they found it difficult to perform in the criminal justice system as people expected them to or wanted them to.
00:17:18
Speaker
And then the response they got from criminal justice system people was almost worse as a result. So, for example, they described how they might and have a heightened sense of social justice and moral rules that actually moral compass was was quite high in participants.
00:17:33
Speaker
um And that would often result in them questioning things they were told and they felt that people should sort of earn respect rather than just kind of assume it. Well, obviously, in the criminal justice system, and police, and judges, people like that kind of are used to, I suppose, holding a certain level of respect.
00:17:52
Speaker
But from these participants, what they described was that they wouldn't respond with this kind of automatic obedience to authority. and people can't tell me what to do, that you have to sort of earn respect.
00:18:04
Speaker
What this resulted in was that sometimes this sort of, end this had a detrimental effect on them because not only would they question what they were being told to do, they wouldn't mask their inner feelings as at the same time.
00:18:18
Speaker
So, for example, they might go into court and and tell a judge um exactly what they thought. And the kind of autistic inability to mask those inner experience meant they didn't perform as perhaps a judge would want them to in a court setting.
00:18:32
Speaker
So where other people in it in ah in in that kind of setting might tell the judge what they want to hear, even if they don't really believe it or because they think, well, I don't really want to, you know, I don't want to go down. for as long. And what we found with these participants was that they wouldn't perform in that way. They would still be blunt in their communication style.
00:18:49
Speaker
And and in to some extent, that honesty was also about not being controlled. and That was about and and not having authority telling the the individual what to do.
00:19:00
Speaker
But as a consequence of that, that often meant that judges and professionals in those systems and would often feel quite angry and would get this kind of um irritation that the individual wasn't kind of bowing to the authority, which which perhaps they were used to or or felt that that individual should.
00:19:18
Speaker
ah And often then that resulted in a kind of and and sort of jostling for control or heightened irritation in the professional, um telling the person more what to do.
00:19:29
Speaker
um And so then they they sort of and they might get additional sentence lengths or and ah more kind of harsh and punishment because they wouldn't kind of bow to that authority in that setting.
00:19:44
Speaker
The fourth thing we found was that and and participants and described how because they didn't act in a typically autistic way, um schools didnt often to know how to support them.
Impact of Misunderstandings and Rejection
00:19:56
Speaker
And that led to them feeling that no one understood them. ah They would often be rejected from school, one school to the next, without any suitable support. And participants described how thatlet that left them feeling frightened, traumatized, that no one would care for them.
00:20:12
Speaker
And they often then responded and and kind of through those behaviours at a younger age, their kind of typically developing peers. So what they described in this one was that schools often had a place where they could support young people who presented with kind of their autistic and typical sort of profiles.
00:20:30
Speaker
So people presented with more typical autistic profiles, and then they seemed and ah to have a kind of place or a way to support them. But these individuals who were more seemingly socially skilled and socially perceptive in order to avoid demands on them ah were often misunderstood in these settings. And they felt that they were labeled as being bad um rather than being anxious or frightened.
00:20:54
Speaker
And they felt that this kind of lack of understanding led to difficulties not only in terms of delays of of being diagnosed, um but also it meant that people like teachers or other professionals and at that age responded to them in a way that was sort of increased authoritarianism. You need to be told what to do rather than connecting with the terror and that perhaps and and and fear that that individual had.
00:21:19
Speaker
And often what they felt was that they would go from one school to the next or one teacher to the to the next and being told, we can't deal with you. So and really sort of receiving these messages that that nobody could kind of handle them, nobody could deal with them.
00:21:33
Speaker
And what they described is that this left them feel like feeling even more frightened because not only because they couldn't contain themselves, that that frightened them themselves. They often described how terrified they were afterwards and and when they look back at what they'd done.
00:21:47
Speaker
In that moment, they were sometimes terrified of how they might respond. And now they were being told that, well, not only can you not control yourself, but we can't deal with you either. And what they described is that that left them feeling even more frightened um that nobody would be able to protect themselves from the front from themselves either.
00:22:06
Speaker
So this constant sort of ah misunderstanding, ah perceptions of feeling rejected, a loss of trust in in people to be able to care for them or to be able to support them.
00:22:16
Speaker
ah Many participants described feeling traumatised by their experiences in the criminal justice system. And they felt that school could be the sort of pipeline to prison and for some of those people.
00:22:29
Speaker
And the last thing we found then in relation to people's experiences was that life with autistic PDA was experiences as this constant battle with people in authority.
00:22:39
Speaker
And that was replicated in the relationships their parents and family members had with professionals in trying to access support as well. A large number of participants described this sort of constant battle they described it as um throughout their lives of being misunderstood by others, and others responding to them in a way that wasn't as authoritarian rather than compassionate.
00:23:02
Speaker
And this disbelief led not only to difficulties for the individual themselves, but often what they described as sort of parent blaming. and And parents understood that, you know, they talked about how they could see their child sometimes being like they described it as like master manipulators.
00:23:17
Speaker
and They could portray themselves as charming or using flattery. um in certain settings, but then perhaps when they came home or in other settings, just having these complete meltdowns because school had been so exhausting.
00:23:30
Speaker
And pete parents described how this often resulted in them feeling, they used the term gaslighted and by professionals, that kind of idea that poor professionals just didn't really believe them that the child was autistic because um because of the the differences in in terms of the strategies the child might adopt in different settings.
00:23:47
Speaker
and And so sometimes the parent would be told it was their fault, they were too soft, or perhaps there were there were deficits in their parenting, and some had been threatened with legal action as well.
00:23:57
Speaker
and And so they felt that some this led to, for some of them, leading to this kind of constant battle. and between on the one hand and themselves being passionate and resourceful and some of them themselves noted that they were autistic as well and and intelligent and articulate and really wanted to fight for their children on the one hand, and but on the other hand, experiencing this sort of retaliation.
00:24:22
Speaker
And they described for them this battle was not only in trying to access help for their child or or the person they were supporting and trying to scaffold them at the same time, and but a real in this real sort of, I suppose, juxtaposition of wanting to protect their child and themselves from professionals, but at the same time being scared of the harm their child might cause to themselves or others as well.
00:24:45
Speaker
um And ah they summarised that in terms of saying it wasn't just a battle looking after him, it's everyone else. So I think that was one of the things that really struck us undertaking the research was just um I suppose the level of and and effort and the the challenges, I suppose, that people surrounding that person experienced as well.
00:25:09
Speaker
Yeah, and I mean, personally, just as somebody who supports many PDA individuals and their families, you know, that really is quite hard to listen to. um And I think you've really, you know, painted a picture of how terrifying this is for for autistic PDAs. And again, you know, the um associated blame that their families can experience as well.
00:25:29
Speaker
Absolutely. and I suppose, you know, we felt and so privileged for people to have told us their stories. That was something that um that really came across. um And I suppose in in terms of our findings, we were keen to to consider if part of the I suppose the background to the study was, well, if we want to train people, then criminal justice professionals or or anybody else involved in these sort of settings.
00:25:56
Speaker
If we want to offer some training, what might be useful for them to know? So we asked participants that as well, and we looked at what factors they felt were unhelpful um for autistic PDAs. I like the expression you use and who kind of come into contact with and ah people in the criminal justice system, what was unhelpful and what was helpful.
00:26:17
Speaker
um What we found was that and perhaps unsurprisingly, um they felt there were several factors that were unhelpful. And the first was a kind of adopting an authoritarian response and worsens the situation and because the the person feels that it's just an attempt to control them.
00:26:33
Speaker
And that really escalates that kind of threat response. And they talked about this sort of interaction that specifically um autistic people with PDA would have with criminal justice professionals that maybe people just with an autism profile wouldn't have.
00:26:48
Speaker
And they talked about this real kind of um that people will have this sense to dominate and in the criminal justice system. That's their role. You know, they are given control. They have authority. and But because of that, and they can sometimes and relate to and ah autistic people with PDA through using power and and having a lack of flexibility because they're used to just things being my way, as they said.
00:27:12
Speaker
So one of the things they talked about was that and with with them, the difficulty was it had been ah my way, no, my way, no, my way. And you'd have this constant kind of battle for control.
00:27:23
Speaker
They described how this would then kind of level that ah increase that level of threat and and escalation and and real desperate then exertion for um for control through more sort of desperate behaviors.
00:27:35
Speaker
They felt that misunderstanding the source of the behavior as being dis-social, sort personality related, as opposed to being a response to threat, would sometimes lead to and ah criminal justice professionals lacking compassion.
00:27:50
Speaker
So often they described that they were being told they were being badly behaved. They just needed to learn or they just needed to get on with it. and And that this was experiences, people feeling really dismissed. People just didn't understand that actually the function of the behavior was around anxiety.
00:28:08
Speaker
ah And that then some people would engage in really extreme sort of behaviors to then try and communicate that level of threat. You know, for some people that might be slashing their wrists or they might be and jumping onto buildings, really extreme behaviors and because the person just really didn't kind of understand and that it wasn't the person just being disocial and just not doing as they're told and that actually the function of the behavior was um due to a threat.
00:28:35
Speaker
They also felt that and one of the things that that and escalated or was kind of unhelpful was that when criminal justice professionals witnessed these extreme threat responses, and their own expression of fear really escalated.
00:28:51
Speaker
ah And then you end up with the autistic person feeling that, well, they I'm right to feel frightened then. So what they described was this and this kind of visual terror that almost exudes from the person.
00:29:05
Speaker
and They're that terrified. you can It's palpable. You can physiologically feel it. And I suppose in my work with clients, i would've I've noted that too. and that this The level of terror is almost physiologically there.
00:29:17
Speaker
And what participants described was this sort of mirror neurons, the idea that almost you mirror the kind of experiences that that are in front of you. And so what they talked about was that sometimes the individual will be terrified, then the police or a teacher or some criminal justice professional would would have contact with them and they would experience that terror and then they would feel terrified too.
00:29:40
Speaker
And then when the individual saw the police person or whoever it was being terrified, they then became even more frightened because they thought, you don't know how to deal with me, like what's going to happen?
00:29:51
Speaker
So they ended up in this real kind of escalating cycle of terror ah where both mirror neurons were kind of feeding off each other. um So that was something that seemed to be quite unique in terms of um ah kind of the autistic PDA experience as opposed to people ah without PDA.
00:30:09
Speaker
So we asked them what they felt would be helpful. And participants said that and adopting a warm and compassionate approach and to explain boundaries in an intelligent way that helps the person to reduce their levels of threat would be helpful.
00:30:23
Speaker
So what they described was that and it wasn't that people shouldn't adhere to boundaries or they shouldn't and do sometimes things that are being asked of them.
00:30:34
Speaker
But it's if somebody can explain that in a warm and compassionate way, that can help to build trust. And they talked about people kind of flexing their authority, almost like flexing a muscle, but flexing this authority ah is really kind of unhelpful.
00:30:49
Speaker
Whereas if somebody can explain in a kind of articulate um and logical way why the request they're making ah may be something for that person to consider, then they feel that would be really helpful.
00:31:01
Speaker
ah They felt that criminal justice professionals who listened and didn't always feel that they had to be right and reduce that sort of level of battle. And I should add that, you know, a number of participants did talk about positive interactions they'd had with criminal justice professionals too.
00:31:18
Speaker
They felt that those some some of the people that were really helpful with those that had had experience of and ah people with autism in their families. They had specific training on autistic individuals or just generally adopted a warm and compassionate manner as opposed to one but where their only repertoire in their toolkit almost was authority.
00:31:42
Speaker
um So they felt when people had a range of strategies to use um and maybe lived experience with some of those things, that was really helpful. And they said that it would be really helpful for people to understand that autism comes in many forms, and that obviously people may be used to the more traditional kind of narratives that we've learned around and autism symptoms.
00:32:03
Speaker
and But and understanding that those might come in different forms and responding in a kind of low arousal, sort of low um threat response can help to reduce the levels of anxiety in that person.
00:32:17
Speaker
So they felt that it'd be really helpful for um us to deliver training. And I'll explain a little bit at the end, I suppose, about our recommendations for that. and But participants really wanted people to have training and to understand those things.
00:32:30
Speaker
and and how they might respond in a way to reduce the behavior escalating. They felt that ah specifically this related to and understanding that and people autistic people with PDA um maybe do have eye contact, they can sometimes read the room,
00:32:49
Speaker
and and and they may adopt more intellectual challenges um and would be helpful for people to understand um and to really understand the function of that behavior as being threat related.
00:33:02
Speaker
and So people felt that would be helpful. They also really talked about a systems approach to so supporting autistic PDAs to provide a more holistic response to their needs um and reduce the likelihood of contact with the criminal justice system.
00:33:18
Speaker
So one of the things they really talked about was that often the person would only have contact with criminal justice professionals when they were in an escalated kind of um ah threat response. And they felt that actually it would be helpful sometimes for that person to have contact with those professionals when they were at baseline, perhaps when they weren't so and heightened in their response so that they could that everybody could get to understand that individual.
00:33:42
Speaker
And they really wanted a multidisciplinary sort of response. So linking in with social work, family liaison, mental health teams, and not this kind of binary view, I suppose, that we have sometimes, and we see this through in other settings too, and around mental health support being very separate to and autism support.
00:34:03
Speaker
and and sometimes those services being separated. um And that was something they really struggled with in terms of autistic PDA and because they felt that a lot of the mental health support they needed related to trauma.
00:34:16
Speaker
And particularly they talked about the trauma of how they experienced response from criminal justice and professionals, ah their experiences of education as well.
00:34:27
Speaker
um And that often then that contributed towards the their perceptions of threat. Family members also talked about how they felt they would like more aftercare, um after incidents, a kind of follow-up care.
00:34:39
Speaker
And they felt that sometimes it impacted on their own mental health as well. Sometimes they might struggle to get into employment or they might struggle to financially um as a result as well, because it might be difficult for anybody else to support the the the child or the person they were supporting.
00:34:54
Speaker
because of the levels of extreme behaviour. ah And then obviously they were then sort of wrestling with trying to support the child themselves, getting help and themselves as a family member.
00:35:07
Speaker
um And many of them talked about how that had impacted on their mental health. and So they felt that um and that would be really helpful. And in terms of therapy, they also felt the interventions for people with autistic and PDA could be adapted to take into account those that specific profile.
Adapting Therapeutic Approaches for PDA
00:35:25
Speaker
So they talked about how some of them might have been offered and therapies such as cognitive behavioral therapy. and which is ah a really, really good um intervention for anxiety. It's got really good evidence base.
00:35:37
Speaker
and It's got a set number of sessions, but obviously those kind of things can act as barriers for for people with PDA. So they talked about um sometimes they could be removed from therapy or waiting list because they didn't attend.
00:35:51
Speaker
and the sessions they were told to or they felt that this sort of demand for only 10 sessions was very difficult for them. So it was almost like the very symptoms of PDA made accessing therapy and very difficult as well.
00:36:04
Speaker
And CBT requires people to kind of face your fear. So if you're frightened of something, that's unreasonable, so that you should approach it. um you know So if you're frightened of public speaking because you think people will judge you, the more public speaking you do, the more you realise that actually it's okay.
00:36:22
Speaker
and And so it's ah approach something you're frightened of rather than avoid. But participants described how for them this was just absolute terror. It wasn't just anxiety, it was absolute trauma and terror.
00:36:35
Speaker
And they said, well, you wouldn't ask a victim of sexual abuse to face their abuser. they They felt that the CBT approach was perhaps not always helpful for them and and made things worse. And what they wanted was therapy that would enhance this sense of safety.
00:36:49
Speaker
So more trauma informed approach. um to enhance these feelings of safety and reminding therapists that and that perhaps that the the difficulties are slightly different.
00:37:00
Speaker
And so that was really interesting to hear that some people struggle to access therapy to support them with their needs because of the very symptoms they presented with. Yeah, and I guess as well, you know, what we hear is that CBT yeah can be really helpful for PDAs, but a lot of it depends on the relationship with the therapist and that level of rapport and the level of trust.
00:37:19
Speaker
So it might work with one therapist, but not with another, depending on on their understanding of PDA and and their flexibility and their approaches as well. Absolutely, definitely. and and like And that's certainly what participants and talked about as well.
00:37:33
Speaker
They said that the therapist that could be more flexible and in terms of understanding those needs, understanding the functions of those behaviours and and ah was very, very important.
00:37:44
Speaker
And it's that building relationships. There was a lot that participants talked about, about that trust is really, really important. And building those relationships is kind of pivotal. um for any of those and ah sort of changes.
00:37:58
Speaker
Yeah. So in study two, then, and this is where we talk to the criminal justice professionals and got their point of view. And we asked them and and what knowledge should they have about and autistic PDA.
00:38:12
Speaker
The first theme was that they felt that and autistic people with PDA in the criminal justice system can be really violent, was the expression that that was sort of used. and So there was something about them almost mirroring that understanding, I suppose, about them feeling that perhaps they were more violent, I suppose, than and people with ah just autistic features alone.
00:38:34
Speaker
um And they felt that this had would resulted in these clients being more likely to be placed in seclusion in forensic settings and more likely to require physical restraint and more likely to require physical interventions.
00:38:47
Speaker
So they noted that um potential capacity for for violence as well. The second thing was they felt that um ah some participants felt that autistic people with PDA purposely antisocial defiant and break rules.
00:39:01
Speaker
So there was this perception from from participants that and they would challenge authority and they would breach court orders. They would not conform to instruction and and When asked the the sort of origins of that, ah most people felt that it related to the person's personality um rather than autistic features.
00:39:22
Speaker
um Sometimes terms like and ah psychopath were used and they felt that they the individuals were more likely to breach orders that were placed upon them as well um and have higher levels of punishment or sentencing.
00:39:36
Speaker
So there was a real theme there about and ah perception of these sort of behaviors being driven by antisocial behavior and personality. And then the third theme related to the wanting training, I suppose, in terms of how to support a person with PDA.
00:39:55
Speaker
and Half of the sample said they'd not even heard of PDA. um Only five had received and specific training on PDA. And as I said, we suspect that's a lot higher than and would be expected in the general population of criminal justice professionals, because obviously the study was advertised on the PDA website. 27 participants had had no training in PDA at all.
00:40:16
Speaker
um Twelve of them thought that PDA was a form of autism, but they they didn't really know what PDA was. and And many of them thought that and PDA was some sort of mental health problem or a personality problem as well.
00:40:30
Speaker
and So there was a real lack of understanding about about what PDA was. and But there was a real keenness from criminal justice ah professionals to understand that. um So and they did want more training um to understand in what ways they might support someone and with PDA.
00:40:48
Speaker
So those so those were what those are the findings from the second study. Lovely. And I guess, you know, you'd already got a very good understanding of PDA. um Was there anything that surprised you out of either of the studies?
00:41:02
Speaker
And yeah, and I suppose obviously as a researcher, it's really um important that we try to separate the lens um that we're analysing the research through, I suppose.
Family Resilience and Challenges
00:41:14
Speaker
You know, it's a double edged sword in the sense that it's obviously I'm really fortunate that I i have and lots of training and in autism. I undertake autistic assessments and um and I've had lots of additional training and in PDA and I've been really fortunate to work with lots of autistic clients and and and those with PDA. So and that's really helpful on the one sense because it helps me to have that kind of lens, I suppose, through which I might be able to hear some of those stories that people have been able to give.
00:41:46
Speaker
and But we also have to bear in mind that um the narrative that I bring may be different to the narratives that other other people bring. um So on um we try, obviously, as part of our thematic analysis to be really reflexive and really think about and our positioning as a researcher and and and perhaps what we bring to that.
00:42:06
Speaker
ah So as part of that, obviously, we think about, and yeah, I guess it's really important to to listen to the stories that people tell us and and not just what we bring.
00:42:17
Speaker
But I did think it was helpful in terms of particularly obviously my PhD was trying to understand why staff might not always be as compassionate as we might like them to be and why sometimes working with clients in forensic settings can be really challenging.
00:42:33
Speaker
um And most people who come into those job roles come into it for really good reasons that they want to help. They want to do good by society. They want to do do good things.
00:42:44
Speaker
um So I try to hold that lens um as well, I suppose, when trying to hear the criminal justice system professionals experiences. um I think the stroke the thing that struck me most was um as a researcher was so certainly how powerful it was that at the family members and the challenges that people had gone through and that kind of constant battle.
00:43:08
Speaker
and The resiliency, I suppose, that that those people brought was phenomenal. um And that really came across and that they'd really and had to battle very hard um for themselves and for other people.
00:43:25
Speaker
um And that was really powerful. Yeah, absolutely. So, I mean, obviously lots of of findings there. um And I mean, where'd you start? What were your recommendations based on those findings?
Psychological Aspects of PDA
00:43:40
Speaker
Well, I suppose there were there were two sort of things from a psychological perspective that we noted, um particularly really thinking about um how autistic PDA might differ um in terms of their contact in the criminal justice system compared to um autism alone.
00:43:56
Speaker
And one of the things we really found was these reciprocal roles that they might get into with people in the criminal justice system. and And I guess suppose what that related to was having this, the individual really bringing with them this a huge fear of a a lack of a personal autonomy or control. And that led them to having this sort of anticipatory anxiety and a heightened extent of state of alert, sort of really looking out for kind of increased um subtle changes in the environment, who might pose a threat.
00:44:27
Speaker
This sort of constant radar, I suppose, for for threats to that autonomy and control. And what we saw in those individuals is that they sometimes might engage in these kind of safety behaviours to try and achieve control that might be charm, negotiation or manipulation. But when they felt really controlled, that could make them feel lot more defiant sort of aggression kind of responses.
00:44:52
Speaker
And when that person was then tried to be controlled by a criminal justice professional, that then led to them trying to get more control. So it kind of then heightened sense of terror and heightened fight or flight and a heightened need for control. So it was this escalating sort of cycle.
00:45:08
Speaker
But one of the things that we noted was actually that it's a very similar thing that the criminal justice system person is experiencing as well. you know They come into their job, if we think of the police, they come into their job role often with a sense of and a requirement for personal autonomy or control.
00:45:25
Speaker
If they don't have that, society can can go quite wrong. and They might also have this heightened kind of threat system where they're constantly on the lookout for um subtle changes in the environment who might pose a threat.
00:45:38
Speaker
and this need for control. And obviously when people threaten somebody's need for control, who say is a police person, they likely respond with increased control. um And, you know, if somebody opposes that, they're likely to become ready to fight or flight and to regain that control.
00:45:55
Speaker
So what we saw was that actually the autistic individual PDA and the criminal justice system professional have very similar patterns in terms of those sort of needs for control. But obviously when those two match, that's when you get that real clash.
00:46:08
Speaker
And that was the thing that we saw that we felt really escalated for some of these clients, and that situation because of the very nature of the kind of criminal justice system sort professionals role.
00:46:19
Speaker
And I guess the second thing we found from a psychological point of view was I suppose the real subtle differences between the social sort of personality styles and autistic PDA and that sometimes those things could look quite similar.
00:46:36
Speaker
Obviously, it's really important to note that and I should have said this at the beginning. So excuse me. You know, we know that the majority of autistic people do not engage in offending behavior.
00:46:47
Speaker
um And lots of autistic people with PDA don't engage in offending behaviour either. But for those that do, and then obviously we need to look at how those people might be supported.
00:47:00
Speaker
We also know that some people might have autistic PDA and dystocial personality features. um So some people might have both of those things. And it's really important from a criminal justice setting that when we're determining and those things that we have a kind of qualified healthcare care professional to decide well where one starts and where the other ends.
00:47:23
Speaker
And participants were really, really clear that they didn't want to apportion blame on their behavior as a result of being autistic. um And I think that is really important ah that obviously ah factors might contribute towards some of those difficulties and aggression responses.
00:47:45
Speaker
and But participants were really keen that they wanted support for those things. They didn't want um aggressive aggressive behavior to be excused in any way. There was no at no point where they saying that was okay.
00:47:57
Speaker
So it's really important that and as professionals, when we're trying to support clients who are engaging in kind of behaviors that might result in contact with the criminal justice system, that we try to have a really comprehensive formulation to understand ah what aspects of are autism, what what aspects of PDA, what aspects of the person's personality, their own and a sort of personality style.
Training and Multidisciplinary Support
00:48:22
Speaker
But what's really important is that criminal justice system professionals hold on to that for some individuals those responses are as a result of intense terror and threat and fear and not because they purposely want to defy that person or purposely be rude or be violent.
00:48:38
Speaker
um So we created sort of um some guidance I suppose in terms of where some of those features might overlap and where they're they're different. ah So in terms of recommendations, and obviously we recommended training and we felt that and ah professionals who have contact with autistic people with PDA um could have training in terms of the differences between autism an autistic p d a and what that might look like, ah what the differences are between oppositional defiance and kind of conduct disorders. So those are things that we might see in young children.
00:49:16
Speaker
um who just say no we just don't want to conform um who just kind of break the rules or don't want to do as they're told but for reasons that are aside from um autistic pda so those are because they're anti-authoritarian they are oppositional they just don't agree with with with social rules generally they might have more immoral beliefs whereas autistic pda and ah is um uh sort of defying rules or or not adhering to rules because of terror and fear So we felt that and professionals would help it would be helpful for them to understand the differences between those two things and to really understand the function of behavior and how to respond in those settings.
00:49:56
Speaker
We really felt that we needed to adopt more trauma informed approaches in education and therapy and criminal justice settings generally and to really acknowledge that level of trauma that those people may bring and how we respond to that.
00:50:11
Speaker
And understanding that that kind of and the way that the person's and those fight or flight responses and in which the body might kind of mirror some of the physiological responses to others and can sometimes escalate situations.
00:50:25
Speaker
So if we can teach criminal justice system professionals to have like low arousal. So sort of in other words, even though you might feel really terrified that somebody is really really quite frightening in front of you. How do you present in a low arousal state?
00:50:38
Speaker
um How do you try to contain your response in that situation to try and keep things calm um and low expressed emotion? um So teaching people those things could be really helpful to reduce that escalation and that kind of cycle that we see.
00:50:52
Speaker
ah and really thinking about how do we communicate with that person to help them make choices in a way that's best for them. So almost in a intellectual way, being able to explain why we might be asking someone to do something or what, and why they might want to consider and what their options are and and doing that in a way that's intellectually and sort of um considered um and not assuming authority.
00:51:19
Speaker
So in other words, giving people like another um sort of string in their bow or or in another kind of tool in their kit um that, you know, if you're telling someone to do something that's not just working like, well, what else might you want to use?
00:51:31
Speaker
I suppose and in a way that we might do with parents as children move from childhood to adolescence, they have to shift their strategies that you can't just sort of you know, you can't tell a 14 year old to just do something. You have to be a little bit more intellectually sort of challenging and think, well, you know, how do i explain that to make them you know think it might be a good idea?
00:51:48
Speaker
And so I suppose it's sort of teaching criminal justice system professionals strategies a little bit like that. um And then, um yeah. And then ah the other recommendations were just around um this kind of multidisciplinary working.
00:52:02
Speaker
So improving access to psychological services for autistic people with PDA, and which included a mental health needs and not just kind of um ah strategies in relation to autism.
00:52:13
Speaker
ah really supporting the amount of and access to support the family members and carers can get as well, which acknowledges the increased and and large levels of stress that might bring to them as well.
00:52:26
Speaker
ah We also recommended having a more reflective space, I suppose, for teams supporting autistic people with PDA ah where everybody could reflect ah So whether that's um social workers, psychiatrists, teachers, ah police, the family member, but having this real reflective space where everybody could reflect there together in a a non-judgmental way about what it's like to support that individual and acknowledging that sometimes it could be frightening, sometimes it can be frustrating when people don't do as as we want them to.
00:53:00
Speaker
um what that feels like, but and then agreeing together how um how to respond in a way that's helpful for that person as well. And obviously, you know if the individuals are of um of age, they can they can be involved in those discussions as well.
00:53:14
Speaker
But really working in that kind of supportive reflective space so that all voices can be heard equally um on their experiences supporting that person. ah And then really thinking about making sure that we are follow up contact for and for the autistic person and their family following that contact with the criminal justice system, given that could have been um quite traumatizing and and contribute towards and subsequent difficulties.
00:53:41
Speaker
and And as we've we, I think you've already um psychically ah mentioned already, um in terms of the interventions for for autistic people with PDA in terms of therapy, and we have talked about, and we made recommendations that we felt it'd be helpful for them to have more time built into sessions for rapport building.
00:53:58
Speaker
So often with CBT, it might be say a set number of sessions, say 10 or 12 sessions. um And the per the therapist might not really be allowed to kind of go over that. They're quite prescribed sessions in terms of the content.
00:54:10
Speaker
and But we've suggested that for autistic people with PDA, it would be good for that to factor in that additional time for rapport building, because as you so rightly said, and that is imperative and in terms of supporting the person to commence therapy, and it might need mean that they need additional sessions for that.
00:54:27
Speaker
um for therapists and practitioners to have an understanding specifically around autistic PDA. Lots of therapists and people of our training, I suppose, in terms of autism, but understanding what those additional PDA features might look like and would be really helpful as well.
00:54:42
Speaker
and and specifically helping them to understand that the provision of therapy can in itself act as a demand. It's like another demand placed on that person. So understanding that um and really using these kind of compassionate and more trauma informed approaches.
00:54:58
Speaker
So, yeah, that's what we recommended. Wow. Gosh, that is fascinating. It really is. and And yeah, I mean, obviously working for the PDA Society, it's so exciting to actually have some research now to be able to share with professionals. So, you know, thank you so much.
00:55:15
Speaker
um It's been absolutely brilliant. I guess I've got two further questions. and You know, what are the next steps now for your research?
Future Research Directions
00:55:24
Speaker
And so I suppose the first step is obviously to share it. We've shared it with you first as ah as the most um important audience, I suppose, in terms of um and the recognition, I suppose, of of the gratitude that we had for everybody that's taken part.
00:55:38
Speaker
um So what we hope now to do is to obviously begin to share that in and sort of more formal places. So um and ah peer review journals and conferences. We're attending a conference um in uh september time for criminal justice professionals beginning to share that with them um and being able to think about how we can help people to and to hear these voices um and to think about what we can do on a practical basis and i know the pda society is as we've talked about um what that might look like in terms of how we might adapt training for people
00:56:15
Speaker
um And I suppose it's really understanding in a kind of compassionate way, I suppose we understand um from this why criminal justice system professionals might respond in the way they do um to this sort of client group um and and and sort of um understanding that and understanding why they might do that, but maybe supporting them to do that and in alternative ways and could be helpful for everybody. so And the future steps would be definitely to to share the findings more widely and and to be able to really make kind of practical changes.
00:56:49
Speaker
always think research um research is wonderful, but it it needs to have an impact. and And we hope that the findings will be able to share those with people um to to make that impact so that people's experiences improve.
00:57:04
Speaker
OK, so 17 breaks a lot. Absolutely. Well, I'm running out of adjectives to describe it. i've I've got so many thoughts going on in my head, but it's just been absolutely invaluable. um And, you know I can't thank you enough for taking the time out of what I know will be a very busy schedule to share this research with us.
00:57:23
Speaker
Thank you. ah Thank you very much. and And yeah, I just want to reiterate thank you to all the participants that took the time to to um share their story. We feel incredibly privileged and that people have have taken the time to do that.
00:57:38
Speaker
And we hope that the the research has a positive impact for people. um And I suppose just to bear in mind that we know that hearing these things um can be difficult. Sometimes it can resonate with experiences that other people may have had that haven't been involved as well.
00:57:53
Speaker
And so I suppose it's just to reiterate if anybody's having any difficulties, I know that and the PDA Society, I know you do amazing work and I know that they can contact you and if somebody's struggling, if this is perhaps brought up difficulties for the person that they'd like some support with and then I know that you're a really useful resource in terms of being able to access support as well. Absolutely yeah our support service is available and I'll pop the address or the email address the support service in the show notes as well if anybody would like to access that.
00:58:25
Speaker
So thanks again Rachel it's been absolutely amazing thank you. Thank you. If you have been affected by any of the issues raised in this podcast, please do contact our support service.
00:58:37
Speaker
You can see the link on the screen there. And if you have any further questions about the actual research itself, please email training pdasociety.org.uk.
00:58:47
Speaker
Thank you.