The Aspiring Psychologist Podcast - Supporting Autistic & LD Individuals: The Reality of PBS, TiC & ABA - Autism

Starting point is 00:00:00 I'm Jo and I work as an assistant practitioner in a CAMS service in Lancashire. I bought and read Marianne's book The Clinical Psychologist Collective to accompany me while completing the clinical psychology training application. It proved to be really good company. I found it sparked ideas of how to build experience and skills, but more than that, it offered the chance to get lost in people's stories. It provided a timely reminder not to get so caught up in an end goal and to value and enjoy each job we fulfill along the way because the work we do now is important and matters to those we sit

Starting point is 00:00:39 alongside as well as ourselves. It also gave the reassurance that there are eclectic roots into clinical psychology, which is important for me as someone who's had a meandering journey and not a typical route to the profession. I wholeheartedly recommend the book for both personal and professional reasons. Be prepared to put evening tasks on hold for a while though because once you've started reading it's tough to put it down. When we think about supporting autistic individuals we might assume that all approaches are created equal, but that's not necessarily the case. Different models shape the way autism is understood,

Starting point is 00:01:16 diagnosed and supported, but they don't all have the same impact on autistic people themselves. Some are praised, some are controversial, and others are evolving to better meet the needs of autistic individuals. Today we're diving into three key frameworks – PBS, TIC and ABA. What they are, how they work and what professionals need to know. Hi, welcome along to the Aspiring Psychologist podcast. I am Dr. Marianne and it is my pleasure to provide you this content which I hope really helps your professional but sometimes also your personal understanding of really key issues in mental health and service provision. Today I'm welcoming back Hannah who we previously had on the podcast discussing masking and autism presentation

Starting point is 00:02:05 in girls. It's really lovely to have her back to think more about these models. Hannah, lovely to have you back again. Welcome back to the Aspiring Psychologist podcast. Thank you so much for having me, Marianne. You are so welcome. So I would really recommend that if people haven't already watched or listened to it, that they check out our previous episode because this one's kind of going to be a little bit standalone where last time we spoke about how autistic presentation can differ in females and how masking might be around more and it's a really useful episode so yeah, thank you for that and I hope people do find that helpful. Today we are thinking about some models. Before we dive into each model could you give us a little bit of an understanding about why it's important that people kind of working in services or just with an interest in this

Starting point is 00:02:56 area understand these different frameworks and approaches? Sure, so it's really important to think about things from the perspective of someone who has a learning disability or autism when you're working with these individuals and it can be very very difficult to put yourself in the shoes of somebody who has those experiences. So really understanding these theories is going to help you to do that and to bring the more compassionate focus into the work that you do. Thank you so much. I couldn't agree more. It's really, really important. So thinking

Starting point is 00:03:31 about PBS, which stands for Positive Behavioural Support, could you tell us a little bit about that please? Sure, absolutely. So Positive Behavioural support has a focus on proactive strategies rather than reactive. So it looks at systemic and holistic interventions that will help increase an individual's quality of life. It has the kind of ethos that if you improve an individual's quality of life then the need for behaviours concern or behaviors that challenge will be decreased so it's a much more systemic way of dealing with those behaviors. It was actually adopted by NICE fairly recently in 2015 so it's used quite widely within the NHS I believe. Oh good and I know some of the

Starting point is 00:04:21 approaches used in the past have been a little bit more controversial so if this has been adopted by the NHS I'm hoping this is less controversial. Absolutely I think one of the main things to bear in mind is that it is still based on the behaviorist principles of ABA but it's moving towards that proactive rather than reactive strategies. So people often view PBS as much more humanizing and compassionate because it looks at understanding the meaning behind behaviors and understanding that behaviors that challenge do have a function and looking at kind of helping those unmet needs rather than just changing somebody's behaviours to kind of fit

Starting point is 00:05:07 in line with what society would expect. So it's developed on from the kind of controversial ABA but it's still keeping some of those behaviourist principles. I think in recent years there's been a shift towards positive support rather than positive behaviour support and kind of that continued removal of the behaviourist approaches that underpin it. So it's very interesting but it's a lot more compassionate and person-centred as well when you think about what is the function of this behaviour and how do I support this individual to communicate that in a way that won't be seen as challenging. Great, so it's kind of keeping the bits that worked and kind of, I guess, streamlining and phasing out the bits that were, that yeah, kind of rubbed people not quite in the best

Starting point is 00:06:01 ways. Absolutely. I know that people with autism often viewed ABA as a method to treat autism, which is in itself just very wrong because you can't treat something like autism or a learning disability. It's simply the way somebody is and the way that they view the world. And when working with individuals who are non-verbal and can't communicate verbally, these behaviors often arise just out of a need to communicate something.

Starting point is 00:06:32 I'll give a quick example. So an individual that I've worked with would often come very, very close to you and this increased proximity was viewed as behavior of concern, but it was actually that individual trying to communicate that they wanted social interaction and that's a very very basic need that everybody should be able to have access to. It's very compassionate, you really really want to view these individuals as

Starting point is 00:06:58 humans rather than somebody that you're just working on, it's somebody that you can work with to support. So it's an approach that's definitely more supported by autistic individuals and individuals who have learning disabilities because of that more compassionate lens. Brilliant, thank you. If someone's listening to this and they're like, okay, so if we were using PBS and we've got someone who really likes to stand right here and talk to me, how would we be using PBS to kind of help that feel more comfortable for everyone involved in that interaction?

Starting point is 00:07:36 Absolutely. So what usually happens with PBS is that a PBS plan will be developed and this might be at a PBS clinic or it might be within an MDT meeting and these plans kind of have a very long green section which is for all the proactive strategies and then an amber section which is as they're starting to become challenging and then red when they're being challenging or in crisis mode. So it's a very nice kind of traffic light system. So one of the things that we might implement in the green strategies for an individual who likes to stand very close to others, something that might be very helpful could be intensive

Starting point is 00:08:12 interaction. So giving them opportunities to have that interaction and have that social connection in a way that's more appropriate for them. And if they have that need met met then that might help to diminish the behaviour arising in other more unsuitable contexts. Great thank you so much for illuminating us on that Hannah. I think one of my favourite things about this podcast is that I get to learn stuff that I am not that confident or familiar with as well so it's really nice to have my eyes open to other

Starting point is 00:08:44 stuff that's going on in areas of psychology that I don't currently work in. It was making me think about when I worked in inpatient services and we used an approach by a training company called RAID and it was kind of thinking about, well, that baby is green but it's maybe not quite the shade of green that we might be looking for. so I guess it sounds kind of similar to that it's about thinking about getting optimal results with clear instructions about how to how to get the optimal best out of every interaction for everyone that's involved in it. Yeah absolutely I would definitely agree with that.

Starting point is 00:09:21 If someone's watching this because they perhaps have a family member that's receiving treatment and care, given that this is in the NICE guidance, is this something that people are able to ask to have explored with their loved one? Absolutely. They can definitely request that a PBS plan is created and put in place and I think that is the best way to think about supporting individuals because it's very much focusing on what can we do to prevent rather than what are we going to do to respond to. So I would very much encourage people, family members to request that these plans are made

Starting point is 00:09:58 and that's definitely something that they can ask for. Brilliant. And I know some people can feel a bit hesitant about being directive or assertive. But when I've worked in NHS services, actually it's OK to have a two-way conversation about things that you wonder about or might have heard about. It's not like going in there and saying, I demand CBT,

Starting point is 00:10:22 or I must have this, or I must have that. It's like, are you familiar with that is that a framework that you are able to to kind of to implement in in this service? Absolutely and I think just opening up the conversation with the professionals that you're working with and in saying you know I've heard about this approach with this might be something that we could explore and maybe the professionals have other ideas or have knowledge of other approaches that might be more appropriate or less appropriate and it's great to just have that conversation and I think looking at things from that systemic point of view when family members are more involved and willing to have

Starting point is 00:11:00 these conversations it's much easier to coordinate care and to stay consistent with individuals as well. So I think from my experience, conversations with family members are definitely encouraged. So don't ever feel like it's something that you can't speak about or something that's not really for you to speak on, because it's definitely something that I would encourage. Great, thank you so much for that. So trauma is my specialism and the terms trauma informed, well they crop up absolutely everywhere these days don't they? Even coaches calling themselves trauma informed might just have been on one training course or read a book about it and then could legally call themselves trauma-informed. But can you

Starting point is 00:11:49 tell us about why trauma-informed care for autistic individuals is so important, Hannah? I think when you're working with individuals with autism or a learning disability, being trauma-informed really looks at understanding the prevalence of trauma within these communities. Existing in a world that wasn't designed for you creates a lot of trauma in itself and there's things like institutionalization, neglect, bullying, discrimination. There's so many different avenues for trauma and that really helps us to understand why it is so prevalent. But when working with these individuals and thinking how can I be trauma informed, it's really just taking the approach

Starting point is 00:12:30 of understanding that individual, their personal experiences, thinking what's happened to you rather than what's wrong with you, and trying to prevent re-traumatization because that is something that is unfortunately very common as well. Absolutely and just thinking about my own experiences of working perhaps in inpatient services or people with quite a lot of additional

Starting point is 00:12:52 needs with intellectual disabilities or learning disabilities. What might you be seeing? What kind of behaviors? So I'm thinking about someone who is traumatized might not necessarily exhibit some of the, you know, just some of the symptoms we might be used to seeing. These could be much bigger or much smaller. What kind of things might we be seeing in people that might indicate that they've experienced trauma? Absolutely. I think the biggest one is a mistrust in the system. So you don't feel as though professionals can support you in the way that you need,

Starting point is 00:13:28 because maybe you've been let down before, or you've had experiences that wasn't pleasant. But it can be very small things, such as the environment, things are too bright or too loud, or if things aren't explained to you in an accessible way as well, that can be very scary and it might then lend them to think about previous experiences.

Starting point is 00:13:51 I think the best approach to take when working with someone who has been through trauma is to just be very neuroaffirmative, to allow people to be their authentic selves and to ask them, you know, is this environment okay? Would you like me to close the door or leave it open? And meeting them where they are is the best approach, I think. Yeah, and I think, you know, even if we're admitted to physical health hospital, not

Starting point is 00:14:19 having that control, but also how loud everything is. You know I was in there when I had both of my babies. All of the bins are incredibly loud. All of the doors seem to be incredibly loud. You know if I'd had some additional needs or I've been there for a protracted period of time, I would have got really old really quick. You know and it's thinking about actually when people are admitted to hospital, this is their home and actually we need to be really thinking about how to help them to thrive in that environment. Absolutely, I think what we can do is just try to create a safe and predictable environment for them as much as possible and understanding that

Starting point is 00:15:04 something that's completely fine for you or I might actually be having a huge predictable environment for them as much as possible and understanding that something that's completely fine for you or I might actually be having a huge impact on them. Yeah, just trying to think with that empathy and compassion about how do we help this individual in the best way that we can. And I guess a lot of the people we're talking about might be non-verbal or selectively mute. And so it's really thinking about how to really understand what might be going on for them, how to, I guess where it's ethical, feed into family, friends, caregivers who know this person well as well.

Starting point is 00:15:37 Absolutely and if an individual has a communication passport or a hospital passport which will outline how they communicate, what their needs are, maybe even past experiences that things that wouldn't be helpful. Reading through those documents and making yourself aware of these individuals needs before you see them is something that I think is really helpful. And if you're working with an individual who doesn't have a communication or hospital passport and you think it would be helpful, that's something that you can definitely request. I think individuals with learning disabilities or autism, I think they should all really

Starting point is 00:16:13 have one because it is just so helpful and it can also outline any reasonable adjustments that they need. So creating that kind of environment and that space that they need. These documents can really, really help with that. Amazing. I think you must have seen me unmute myself when you were like, I'm going to answer the question before she asks it. So I was going to say, how do people get one of those Hannah? So thank you so much for illuminating our audience so well on theirs. Absolutely. Are services kind of widely rolling out and delivering a trauma-informed care approach for people with autism or is that something that's still a little bit niche at the moment?

Starting point is 00:16:51 So my experience of working in LD, I've had training in positive behaviour support and trauma-informed care side by side and I think that's the best approach to take. I can only speak about the service that I'm working in at the moment, so I don't know the experiences of people working in other services. But yeah, from my experience, we're receiving the training and it's really, really helpful. But I think, yeah, it can always be expanded. There's no harm in informing people about trauma and positive support and making sure everyone has that really concrete understanding when working with these individuals. Absolutely, you know, whoever we're working with I think no bad time is spent talking about the impact of trauma.

Starting point is 00:17:36 Absolutely. So if we're looking at our same case study then, the person that's coming right up here to speak to us. How might we be dealing with that or intervening if this was in trauma-informed service? Sure, so you would want to understand what their past experiences were if we understand the function to be that they want social interaction and then we can look at okay why is that an unmet need? What have they been through in the past that hasn't allowed them to have that? And then using that to help formulate ideas

Starting point is 00:18:09 in how best to care for them. So we can think about if this is an individual who has maybe been institutionalized and maybe hasn't had that opportunity to really interact with people in the way that they need, then we can think about how do we integrate that interaction into their day-to-day lives. So if they're living in a care setting, how do we encourage the people that are caring for this individual to interact with them more? And one technique I really like is active support. So this is looking at every moment kind of has potential for interaction. So this can be if you're doing like domestic chores for this individual, so maybe washing or bathing, something that this individual might

Starting point is 00:18:55 have less capacity to do, but we can still encourage them to engage in it and to have that interaction. So if they really struggle to understand how to wash their own clothes, you can talk to them whilst you're doing it and they can stand with you and watch you and you can say, now I'm putting the washing in the machine, do you want to help me pour in the powder? You know very very simple things but allowing them to have these very small opportunities for interaction within their day-to-day lives and within the setting that's there to support them and understanding that from a trauma-informed perspective that maybe this is something that they've not always had the opportunity to do. So allowing their staff to really understand that about the individual and understand why it's so important that we do even these very small things with them, because it is the small things that make the biggest impact.

Starting point is 00:19:47 Absolutely, and I guess I was thinking about someone's lack of control, especially around people that they might really like, you know. People can't control whether someone's going to resign and leave a service, and I guess I was thinking about that through a trauma-informed lens, that maybe someone coming and standing right here actually really likes you. And in the past, you know, they don't know when their favorite member of staff might be coming or going from a ward or their home and almost don't want the surprise because can't deal with the surprise of knowing that they're not there. So actually if I keep you right here I'm going to be able to follow you and know when you are going to be leaving. And so

Starting point is 00:20:30 it's I guess just understanding where the motivation comes from for someone to stand there. They've been hurt in the past, can be really useful. Absolutely and I've worked with individuals who have obviously experienced this. It is unfortunately very common, but something that I've used is a now and then board. So when staff are transitioning from shifts, we can have like a little board with pictures of who's working now, who's working later, or even like a visual schedule so individuals can see who's going to be there each day and okay my favorite staff isn't here today but I will see them tomorrow and having those visual tools to really help the individual

Starting point is 00:21:13 understand that okay they're not leaving they're just finishing their shift and that can be something that's very very difficult to communicate and when staff do leave that can be also very challenging, especially if they've experienced that a lot. I find social stories can help and easy reads to put it in a more visual format, but it is something that you're going to have to work through with that individual because it is a very real loss to not have that person that you really relied on for these very basic everyday skills that they're no longer going to be there for. So I think being trauma informed and understanding that that does have a very real impact and how can we hold space

Starting point is 00:21:55 for that, how can we allow them to feel it and validate it as well rather than just trying to move on and maybe alter it. Absolutely, really important considerations and I know in the past ABA has been more controversial that's the kind of controversial one we're talking about and I think certainly in the States it might have got quite a lot of negative press. Is it still used to your knowledge in the UK and And if so, how can it be used in a way that is compassionate and effective? So to my knowledge, ABA is mostly used in the charitable sector and it's not so much used within the NHS.

Starting point is 00:22:34 It's kind of implemented more in the context of play. So using prompting to develop social skills and communication. One of the more controversial techniques that he uses is like positive reinforcement and punishment to also help the development of those skills. I think there's been more of a shift away from that, but yeah, it's still around in the context of somebody who maybe has that very close proximity.

Starting point is 00:22:59 One thing that you might do if you're using it in the context of play as it is often used is that you might then stop playing with them and kind of establish that okay they need to understand that they can't be this close and then when they move back then you re-engage with them and continue to play with them. Or you might use prompting, you might say too close or move back or something along those lines to prompt them to realise okay too close I need to move back. So it can be helpful in the moment for things like that to when individuals have capacity to understand

Starting point is 00:23:37 what that means but working with individuals with autism or learning disability sometimes they might lack that insight and even the prompting or the disengagement, it might not be as effective in my experience anyway because they do tend to lack that insight and boundaries is always a difficult thing when working with these individuals anyway. So it can be challenging and it's not my favorite technique to use but some people do really like it and when it's used in the appropriate way then it can be effective. Yeah it reminded me of an approach that we used to use an inpatient called toots which was timeout on the spot and yeah I think

Starting point is 00:24:19 some of it felt a little bit potentially like infantilizing someone that's a grown adult you know some of the stuff that you bit potentially like infantilizing someone that's a grown adult, you know, some of the stuff that you might do with your toddler and it's, I think maybe some of that aspect is the stuff that hasn't always felt that humane or just that ethical. Absolutely, I think it's often viewed as trying to treat autism which is obviously not something that we can do. Autism is a way of viewing the world, it's a way of being, so it's not something we can treat and having that lens, all those kind of thoughts underpinning the theory isn't too great. But without ABA we wouldn't have positive support, so it has led to

Starting point is 00:25:03 some very important developments in care. so we have to acknowledge the good with the bad I think. Yes indeed we do thank you. If anyone wanted to learn more about these approaches is there like a great book or a great resource or would it just like have a read of the nice guidance where's a great place to start Hannah? Sure so I mean there's all the guidance online that you can look through and searching up the different techniques. There's lots of videos on YouTube and things like that that explain it in a very easy and visual way that might be helpful for an individual who has a learning disability or autism.

Starting point is 00:25:41 But there's lots of research papers as well that you can read through that talk about how to implement it and how it was developed and understanding some of that history I think is really exciting as well. For me anyway, not for everyone but yeah, there's lots of different places that you can look and just simply searching up PBS AVA there's lots of different resources that come up. Thank you Hannah and honestly you you're so good. I don't think you realize how good you are. And today I've been a bit of a nightmare as well because I'm pressed for time and it like, you know, I know the podcast always look really seamless. Today has not been seamless at all

Starting point is 00:26:28 and you've just rolled with it. So I'm glad I got a chance to meet you before so that you know it's not always like that, but you are, you know your stuff and I'm excited to see where your career takes you. Oh, that's so kind. Thank you so much. Just before we finish is

Starting point is 00:26:45 there any kind of final points you want to leave our audience with? Absolutely so PBS if you take away one thing from this video it would be that PBS is about quality of life rather than behavior and that it's so important to have the trauma informed PBS framework in order to work in an ethical and effective way so that we can shift our focus from challenging behaviours to communication for unmet need. And I think this process of humanising neurodivergent individuals will help to remove some of that stigma and work with a more compassionate, evidence-based, trauma-informed perspective that's, and that's

Starting point is 00:27:26 really how we're going to improve people's quality of life. Yes, indeed. And thank you again for your time in illuminating this conversation in areas that I don't think get much ventilation and don't get much airtime. So I hope that people find this really, really useful. Thank you so much and thank you to everyone who listened. I am very passionate about this. So I really, really encourage people to engage with content that sparks conversation about neurodiversity and learning disabilities because the more you talk about it, the more we can remove the stigma. Your passion shines out of you, so keep doing what you're doing and brilliant things will happen, I am sure.

Starting point is 00:28:10 Oh, thank you so much, and thank you for having me. Honestly, thank you so much to Hannah. You know, I speak with a lot of guests and Hannah really knows her stuff. Admirable, really admirable. I do hope you find this helpful. If you're watching on YouTube, please do drop a message in the comments to Hannah or to me or to both of us. Please do let us know why you're watching, a little bit about you. And if your comments resonate with other people, please do reply to them. Do consider subscribing to their

Starting point is 00:28:42 channels as well so we can really help build a supportive community on YouTube. If you are listening as an MP3 on Spotify, you can rate the show. If you're listening on Apple podcast, you can rate and review the show. And wherever you're listening as a podcast, the kindest thing you can do for any podcaster is to follow their show. It doesn't cost you a penny but it really is helpful. If you are an aspiring psychologist and it's your time and you're ready for the next step please do check out my books The Aspiring Psychologist Collective, The Clinical Psychologist Collective and The Aspiring Psychologist Membership is a really great place where we have a whole host

Starting point is 00:29:25 of experts really helping you to up level your skills, your confidence in key areas like CBT, in reflection, in approaches like CAT, systemic, all sorts of things. Interview skills, preparation, practice, confidence in speaking about yourself and rising to the challenge. You can join that for just £30 a month with no minimum term. If you are autistic or you are trying to help advocate for somebody who's autistic or inspire someone who is autistic, please do check out another of my books, An Autistic Anthology, which is real life neuro narrative accounts of people who are autistic or identify as having likely an autism diagnosis and their experiences of working in mental health services. It is a beautiful, inspiring read. If you have read that, we would welcome

Starting point is 00:30:23 your reviews. Psychologist baskets Without a Marian treat Hello, my name is Veronica Kasova. I live in Edinburgh and I just graduated with a Masters in Psychology of Mental Health. Marian recommended me the Clinical Psychologist Collective when I was not working on LinkedIn and I must say I love it. It is one of a kind. It's like a window into the lives of people on the path of becoming a psychologist. The stories are unique, honest, and filled with a kind of intangible wisdom only personal storytelling can uncover.

Starting point is 00:31:30 A common thread in the stories I valued most was to be compassionate not only with others but with myself too. Also not fixating on becoming a psychologist but enjoying life, growth and the final results will come as a by-product. Marianne thank you for taking the time to collate all the stories, the book is a true gem and I think every aspiring psychologist should have a copy on their shelf. Thank you.

The Aspiring Psychologist Podcast - Supporting Autistic & LD Individuals: The Reality of PBS, TiC & ABA - Autism

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