We are the Association for Child and Adolescent Mental Health, or ACAMH for short. And this is ACAMH Learn. Today I'm going to talk about how to recognise post-traumatic stress disorder in children and adolescents with intellectual disabilities and/or autism. My name is Georgina Parkes. And I'm a consultant psychiatrist by background in learning disability, but currently working with adolescents aged 13 to 18 in an inpatient unit in London in the UK. So just to start off with, there are other webinars in more detail about trauma and PTSD. But just to go over what is trauma. So trauma is the event itself. And Freud thought of it that as a foreign object lodged in the brain. And for me, that's quite a good image that helps me to think about how the trauma could still be there years later. You might not even notice it, but it's still there. And so if something happened-- you've learned to live with this foreign object stuck in your brain and you're just getting on with things. But then something else happens years later that could trigger that like a secondary trauma and then all the symptoms can come out. So it could be the initial trauma and the secondary. So psychologically, psychologists talk about it more as a kind of unprocessed fear, which is also a helpful way of thinking about it. So people will experience trauma, and it could be the same trauma, but then whether they develop PTSD or not will be different depending on them as an individual. And what we do know is people with intellectual disabilities are more likely to develop PTSD, and also people with autism and ADHD as well. So go on to the next part. And I'm not going to say too much, but these are the criteria in ICD 11, the three main criteria symptoms, re-experiencing the event. And that can be in a number of ways. It can affect sleep, nightmares. People talk about flashbacks, for example. Avoidance of reminders. So that can be not going to places that might trigger you, not meeting certain people. Some people might end up just staying indoors, that kind of thing. And then this third one, persistent sense of current threat, which I think is a quite useful way of thinking about you just feeling underlying feeling of fear, essentially. So with complex PTSD, which is new in ICD 11, you still have to have these three core symptoms, plus affect dysregulation. They talk about either emotional numbing or intense reactions or intense emotions, if you like. Negative self-concept, worthlessness, shame and guilt, and difficulties forming and maintaining relationships. Well, again, if you think of adolescents or children with learning disabilities, they may already have a negative self-concept. They're aware of the fact usually that they have some disability, that they're dependent, and they are different to other people. So it might be more likely then to have these symptoms and develop complex PTSD. Perhaps difficulties forming, maintaining relationships that can follow you throughout life. There's also that overlap with the emotional unstable personality or borderline personality disorder. And for such a point that you need to be thinking about this, if you've got adolescents, say who's on the cusp that you're thinking of diagnosing with PD, you want to think about complex trauma, and look into that, and consider if that's present. So what are the possible etiologies of complex PTSD? These can be prolonged exposure. And prolonged exposure affects that concept of self. So your idea of who you can just disappear, really. We've actually got more tenuous sense of reality than we think we have. A prolonged exposure to trauma that we discussed, so like a more chronic abuse in childhood, for example. So not a one-off trauma. And presence of ACEs, which, again is another webinar about that. And that can predispose you to developing complex PTSD in the face of traumas. And the maintaining factors, so an unwillingness to talk or have therapy. And again, you see that, again, with people with autism because having tried to do various therapies or they'll supervise people. It can be quite difficult to sit in a room and you don't know what someone's brain does. So it's very anxiety provoking for young people, but especially with autism. And they don't know what to say or how to talk about things, a lot of it. There might be an unwillingness there or not wanting to attend. So disorganised memory. And this is all about, again, with therapy, how do you remember what you've talked about. But also, for example, if you've got ADHD and your negative thoughts keep popping up, in your mind, you might be re-experiencing a lot more often the trauma and therefore, develop a complex PTSD. So also what we find is that even adults with intellectual disability struggle to develop a sense of themselves as a separate person if you're dependent on others. So that in itself can be a predisposing factor. So looking through the literature briefly, and I'm looking more at people with ID, but again, with adolescents, very similar to those young adults who don't really have that many-- from my experience, very similar presentation. And in the literature, there is a bit more about adults with ID. But it's talking mainly about aggression and anger as being your main presenting symptom. And that does seem to be clinically borne out in my experience as well. So anybody who comes with what they call challenging behaviour, or aggression, or anger, we need to be thinking about, could this be PTSD? Could there have been trauma? And trying to keep your mind open. It may take some time to figure this out. And may need to speak to a lot of people in the network to really find out what's happened as well. So sleeping problems, again, is similar, restlessness, self-injurious behaviour. And it says in the literature noncompliance. But not sure now whether we see that as necessarily a symptom. So we'd expect in adolescence some noncompliance if you like. People isolating themselves, not wanting to go out. And we discussed that as part of the main symptomatology of PTSD and other functional effects. But also, sexually inappropriate behaviours. And really, anybody presenting sexually inappropriate behaviours, any child or adolescent with a learning disability or the autism, we need to be exploring possibility of trauma. It's much more likely than it being anything else. But they may not be able to tell you and their family might not actually know because it may have happened somewhere else. So you do need to speak to everybody in the network, really, try and tease this out. And that poor sense of personal safety, low self-esteem, that is also related to the fact that especially if people are traumatised in childhood, it's very difficult to be able to keep yourself safe later on. And there are studies showing that you're much more likely to have another trauma later in early adulthood, adulthood as well if you've already, for example, suffered abuse as a child. And we perhaps don't know too much about why that is, but it's difficult for people to keep themselves safe. They might try and isolate themselves. But they still somehow get hurt again. So that's very difficult to think about. And I think with all this, it's difficult to think about, as the clinician, it can be very painful and lots of people move away from this type of work because of the feelings that it brings up. So we do need to be aware of ourselves, what our limits are, get help and support from our peers or externally. So clinical experience with adolescents. My clinical experience that you won't get a history of the event from that person usually. Certainly not the first time you meet them. Maybe not the 10th time you meet them. You might eventually get something. But it won't be when you've asked a direct question anyway because-- and it's difficult to ask direct questions because you don't want to lead the person. On the other hand, for a lot of people in general with intellectual disabilities, they can't answer open questions. They find that quite difficult. So it's just about being present a lot of the time, developing a trusting relationship. That is the most important thing. But we think about that, keep yourself safe and so multiple traumas occurring. So for example, in childhood, father's alcoholic, those emotional abuse, witnessing domestic violence, for example. And then in adolescence, being assaulted in a school setting, for example. That could be something that happens and that difficulty of trying to keep yourself safe. And the possibility of not being believed, we got a lot of experience of children and adolescents coming forward with something that's happened and then not being believed. And sometimes, it might be due to the lack of effort, because the trauma is so severe that they've shut it down and they're not reacting at all. So they're not crying and telling you something awful, but in a very deadpan way. But also, if it's another child that's done it, of course, people don't want to think about that as being a possibility. Also had experience of abuse that occurred by a neighbour of the child. And all the other children were given therapy. They didn't have an intellectual disability. But the one child who did have an intellectual disability was equally traumatised and had been assaulted, wasn't given any therapy, and why is that? So we need to be very aware of this in children, adolescents, just because they've got intellectual disability doesn't mean they're not affected. But what can happen is that there's diagnostic overshadowing as well? So this going from the fact we don't say we don't know there's a history and people are saying, it's there, but it's just their behaviour, someone who's extremely aggressive or it's just their autism. I had that recently. It's just a child with autism. No, it's not. No, children with autism don't go around behaving violently like that. There is a reason for that. And we need to find out what that is. That's diagnostic overshadowing. And services can repeatedly discharge traumatised individuals without giving them the correct treatment, without making a diagnosis of PTSD. So we need to be aware of that and be thinking about is this trauma. And there can be trauma in the network because then other professionals feel let down and feel unsupported and they're trying their best. Say, it's a social worker, I'm really trying my best. I need health support. And the health team have just discharged. This is quite common that happens. And family and professionals may even know there was some trauma, but it might be some years ago and they haven't linked it to the current presentation. So that's why it's always worth trying to find out more information. Then slightly more in terms of my experience that can be safeguardings. And these can be real safeguardings because it depends on the individual support worker, what their level of, well, case is, if you like, or trauma themselves. But they could be triggered. And I've certainly seen the child being harmed in those situations, in those crisis points. But also, equally, I have seen claims of harm which have turned out to be false. And because I'm working in an inpatient unit, we can check that out, and go CCTV, and we can work. But I've also seen it in the community as well. You need to be very careful and take a lot of time, be very detailed about talking to lots of people and develop plans about how to safely work with traumatised individuals at times. So the other thing that you can see in adolescents, and children, and people with ID and autism is dissociative seizures. And the reason I call them dissociative seizures, they do have other names, but they're non-epileptic, if you like. They're usually children who do have epilepsy or had epilepsy earlier childhood, so aware of what it is. But I call it dissociative because it's about dissociating feelings under siege and using that, I suppose, and calling it seizure. So it's not that they're trying to pull the wool over your eyes or that they're aware of what this is, but we need to be aware. We need to get good, clear histories of what an actual epileptic seizure worked. And we need to be very calm and kind and think of how we can move forward. And these can actually very quickly stop once you have everybody aware and working in a kind way, if you like. Being aware of this as part of the trauma and being able to decide which ones are seizures and which ones aren't, and how that person's think about anxiety, what could they do instead, or modelling and offering things that might be helpful, like soft toy, or a drink, or sometimes even PRM own medication. We've started with that and then worked down to the other things. And then I said here, persistent demand avoidance can be a presentation of trauma, which, if you like, is a very severe anxiety reaction, PTSD. And so is persistent demand avoidance, but it can be part of that. And we need to be thinking about could it be trauma if that's what the child is presenting with. So just to go into a bit more about what multiple traumatic events children, adolescents, and adults with ID and autism might experience. They may experience life-threatening illness. And it's not just adults, talking about in childhood. Or these children might be born with life-threatening illnesses. They might have spent a lot of time in hospital as babies, even. They might be also more likely to have co-morbid physical health problems, which might be difficult for them to recognise and can often present as mental health problems. In itself, having a child with an intellectual disability can be a traumatic event within a family if you think about imagine yourself having a child, you don't imagine that the child to have a disability, and how might the family deal with that. There might be grief reactions for the child that might have been. And what we do know is there's extremely high divorce rates in these families. So there might be more mental illness. We do know that having an intellectual disability and autism predisposes you, for whatever reason, to have more mental illnesses, which can be experienced as traumatic knowing that in that period of illness, unfortunately, much higher rates of sexual abuse use in children and adolescents with IDD. And some studies show 6% higher, others even up to 20% higher. So we don't know the exact numbers, but we do know it's a lot higher than in the general population. And that can be because you're dependent. It might actually be somebody that you're dependent on that is abusing you and you can't get away from them. So all these things would lead to more likelihood of complex PTSD. And the other thing that I would say is you unlikely, very highly unlikely to see complex PTSD on its own. It is something that you would be then likely to have other mental illnesses alongside that, or ADHD, or autism, or intellectual disability, or all three of those. And these are complex children and adolescents. And it can be difficult to understand what's going on. So each diagnosis does need to be treated independently, separately, and help given. So what we do know is that PTSD and complex PTSD is underdiagnosed in children and adolescents. That there are studies showing that all children experience one traumatic event at the rate of 15%-43%. Again, we don't know how many after 15% to 43% of all children, but that's a high number, isn't it, when you think about it. I certainly was quite surprised by that. And yeah, if you think back in your own life, you may have also experienced a traumatic event as a child at some point or other. And this can be a road traffic accident, something happening to somebody else that you see being harmed or assaulted. There's all kinds of things that are traumatic. Boys then will go on to develop PTSD 1% to 6%. And girls are more likely to develop PTSD after a traumatic event. But what we're saying is that complex PTSD would be after more than one traumatic event, usually. Lower mental and intellectual levels lead to a higher risk of PTSD. So there is a recent study showing that and that symptoms are more serious. And they often don't get the treatment. There seems to be a greater tolerance for abuse for someone with an intellectual disability being abused. And that's a terrible thing to say, but it's well known. In safeguarding, people will talk about that and you get training on it. And I think sometimes that's-- So because it might be somebody else with an intellectual disability that might be doing this or it might be that they're the ones-- that they're doing this to a sibling or whatever it might be. So anyway, people tend to remain symptomatic, unfortunately. And there's high risk of developing other mental disorders and self-harm. And we also get difficulties with interoception. So just even knowing if you're hot or cold, for example. So say you don't like feeling hot but you don't know that. The staff have worked that out. So certainly something we worked out for somebody who couldn't say I'm hot. It's too hot in here, could you turn the temperature down or can I have a cold drink, not able to say that. But you can put those things together and start to realise that person doesn't like it when it gets a bit hotter and that triggers their behaviours. So if you can't say whether you're hot or cold, how are you going to say happy/sad? You might just be repeating what other people say. So it can be very difficult to know yourself. And you might need stuff around you to really understand you to help with that and say, looks like you're feeling really sad today. And there can be difficulties with self-regulation, expression. So being able to say-- asking for something that might help you to regulate the high anxiety. Because of all this, you've really got no clue what's going on. You just know that you feel terrible. And that makes you highly anxious and have a low self-esteem. Talked about the memory. But also processing difficulties, which can come hand-in-hand with all new neurodevelopmental difficulties. In adolescence, with learning disability, re-experiencing can be flashbacks. It can be nightmares. And I've certainly seen somebody who was asleep-- and saying I've seen it. I've spoken to the staff and it was on CCTV. But we don't have CCTV inside the rooms. But somebody was asleep and went from being fast asleep to getting up and strangling that staff member. And that was a very concrete re-experiencing of trauma and I suppose what they wish they might have done in that situation earlier. But these sort of things that we need to know about and need to be able to think about. And also, being open to believe what that person is telling you, even if what they're telling you is uncomfortable. But then sometimes you can get that real, what I would call countertransference, the feeling uncomfortable and like this is really happening when it hasn't happened. And that's when I've been able to see that it hasn't happened, definitely with inpatient work. But you can figure that out sometimes in the community because you might realise that the person that they said wasn't working on that shift and that sort of thing. But it feels very real because, again, what I believe is happening there is very concrete re-experiencing of a real trauma that's happened at another time. And times can be very difficult. It's a difficult concept. It's a vague concept. So depends on your level of intellectual disability. But even people with mild struggle really with time, looking back in the past. And so you might have to say things like, oh, when it was your birthday or when it was Christmas, you might be able to think back to that. But they may get the wrong Christmas or the wrong birthday. It might have been years ago. So the times can be very difficult. And that can feed into this feeling very real. Just some reminders, as I've talked about before, they might not want to have therapy, especially in adolescence. You're not really that keen often to talk about things, especially things that make you feel angry or upset. And so we just need to be open to keep trying to develop that trusting relationship. And that sense of threat, I've seen that presenting as people seem quite paranoid. So these are adolescents that have been on the unit and they might say that people staring at them. They're talking about them. And it feels very real. Or they might even say to that person, stop looking at me, for example, when that person will say, I wasn't really looking at them, I was listening. But we know direct eye contact can be very challenging if you've got autism as well. But then if you add in PTSD or C-PTSD, then they can misinterpret sometimes eye contact as being people staring at them, but also say talking about them. And it may not be, to a degree, where you think this is delusional. But it is a degree where it feels very real. And it leads to very real functional consequences. So you do need to think about how you're going to manage that, and how the staff will manage that going forward, and the families, for example. And the challenging behaviour is, in my experience, the main symptom that was presented to services for help. And then it starts with that. And then you start unpicking what's really going on. In people with autism, and again, it's just some recent studies that up to 40% of adults with autism reported PTSD. So I would say this would have some-- like I say, you don't change straight away when you're 18. So does that mean there are higher rates of PTSD in children with autism? And that's not known about yet. But the events that autistic people find traumatic are very different. And it can be related to sensory processing. For example, at their clinic appointment, the fire alarm goes off and that's happened to me. And then that individual will never come back to your clinic to see you. So you have to find another way of seeing them. These things can be very traumatic. Where someone else might not like it, it wouldn't stop them coming back to the clinic. So again, it can be difficult to-- there might be problems in treatment. And it is about mainly focusing on that relationship, what that person was talking about. But also you might do some educational work around what they're feeling at the moment because they find that difficult. So those things would be different than to working with children, adolescents who don't have a disability or neurodevelopmental disorder. Key points, take home, most common presentation is challenging behaviour. You need to risk assess. But violence and aggression can be a common presentation. And we need to always assess those children for PTSD. Talk to people. Try and find out if there had been any traumatic events because it could be the family home, but it might not be. It might be at school. Could be at another service. Could be on school transport. You don't know. You have to talk to a lot of people, usually. Self-harm isn't always present. And as I've said before, re-experiencing can be very concrete and can be even experienced within clinical teams as well, leading to splitting. And dissociative seizures if the child already has epilepsy can be sign of PTSD. And the negative self-concept, which is often there anyway. So it might be difficult. That might be there anyway. And emotional numbing in the individual can be experienced by the team as that person is fine and so I'm going to discharge them. And once you become aware of that, you will see that again and again. So we need to be aware of that. And we need to be thinking about that within networks. And I think the other point is to think about our own limits as well and what support can we get, because hearing about trauma is very upsetting for that person who's hearing about it as well. So a little bit about treatment. This isn't actually about treatment. But the safe place is the most important thing if you want someone to improve. And sometimes, we're not providing that safe place and they're still-- and the worst thing is if they're living somewhere where that trauma is still occurring to them, it's still happening but we're not aware of that. So the safe place is the most important thing. But sometimes, we also have to work with everybody who is doing that direct work in the place to keep it safe, because not feeling safe is very contagious. And the support workers can feel that. And it can go right up, really way up [CHUCKLES] to managers. I mean, I'm talking a lot more than secondary, tertiary care transfers here. You understand what I'm saying. This can go right up. People feel very unsafe. So somebody has to, usually, it's psychiatrists, or it could be psychologists, someone who's aware of these things needs to contain the anxiety and really look at the placement and how can we keep it going safely. And one of the things is having two support workers rather than one, which is obviously more expensive. But that can really help a lot because then they feel supported and they've got somebody else to back them up. CCTV not in the bedrooms, but in other areas can be quite helpful, that kind of thing. I'm not going to say it's the only diagnosis. And each individual diagnosis does need treatment. Obviously, we wouldn't start them all at once, so it takes time. We'll actually treat one, what's the most serious, what's causing the most problems, then the next and the next, and so on. You might have to do one medication change a week. It has to be quite slow. But you will get there in the end. And everything has to be treated. And it is quite sad because people have talked about individuals with intellectual disability not getting certain treatments. And because of that, they have a disability. That does still go on. Not as much as it used to, but it does still go on. So one of our roles then would be to advocate, yes, they do need that physical health treatment. So for example, autoimmune conditions very common in traumatised individuals. And if that's diagnosed, yes, you need that treatment as much as anybody else. And we might have to advocate for that. Do people need communication sensory assessments. PBS is also helpful. That's Positive Behaviour Support. It's not going to-- just on its own with traumatised individuals, it won't be enough. It has to be done in conjunction with everything else. And as I say, you can see the trauma in the network sometimes, whereas some people are saying there's not a problem and others are left holding all this trauma, and anxiety, and getting quite upset. And sometimes they might leave as a result of that. And then just the final thing, again, is just to be aware of diagnostic overshadowing because that happens so often. This is not just about having intellectual disability or autism. Children who've not suffered, they do have good relationships with their families and can have no other mental health issues. So when things start coming up-- I mean, they might have autism and ADHD. That's nothing to do with how good a family you've got or whatever. It can be genetic. But if you're faced with complexity, think about complex PTSD. And if you're faced with a child or an adolescent with ID or autism and they've got challenging behaviour, that isn't just because they've got an ID. And so please think about what else it could be. But it's not just about that diagnosis. So those are my take home messages. And I'll finish there. Thank you. [STIRRING, UPBEAT MUSIC]