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

Dr Marianne Trent (: 00:00

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, 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 are diving into three key frameworks, P-B-S-T-I-C, and A B, A, 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 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 this Firing Psychologist podcast.

Hannah (: 01:09

Thank you so much for having me, Marianne.

Dr Marianne Trent (: 01:12

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 working in services or just with an interest in this area understand these different frameworks and approaches?

Hannah (: 01:55

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.

Dr Marianne Trent (: 02:22

Thank you so much. I couldn't agree more. It's really, really important. So thinking about PBS, which stands for Positive Behavioural Support, could you tell us a little bit about that, please?

Hannah (: 02:34

Sure, absolutely. So positive behaviour 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 of concern or behaviours of challenge be decreased. So it's a much more systemic way of dealing with those behaviours. It was actually adopted by NICE fairly recently in 2015. So it's used quite widely within the NHS, I believe.

Dr Marianne Trent (: 03:14

Oh, good. And I know some of the 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.

Hannah (: 03:27

Absolutely. I think one of the main things to bear in mind is that it is still based on the behaviourist principles of A BA, but it's moving towards that proactive rather than reactive strategies. So people often view PBS as much more humanising and compassionate because it looks at understanding the meaning behind behaviours and understanding that behaviours, that challenge do have a function, and looking at helping those unmet needs rather than just changing somebody's behaviours to fit in line with what society would expect. So it's developed on from the kind of controversial A, BA, but it's still keeping some of those behaviours 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.

Dr Marianne Trent (: 04:43

Great. So it's kind of keeping the bits that worked and kind of I guess streamlining and phasing out the bits that rubbed people not quite in the best ways.

Hannah (: 04:57

Absolutely. I know that people with autism often viewed a BA 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 nonverbal and can't communicate verbally, these behaviours often arise just out of a need to communicate something. 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 behaviour 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 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.

Dr Marianne Trent (: 06:11

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?

Hannah (: 06:31

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 practise 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 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, then that might help to diminish the behaviour rising in other more unsuitable contexts.

Dr Marianne Trent (: 07:23

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 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 behavior's 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 get the optimal best out of every interaction for everyone that's involved in it.

Hannah (: 08:13

Yeah, absolutely. I would definitely agree with that.

Dr Marianne Trent (: 08:16

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?

Hannah (: 08:30

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 we are going to do to respond to. So I would very much encourage people, family members to request that these plans are made, and that's definitely something that they can ask for.

Dr Marianne Trent (: 08:57

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 okay 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, 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 implement in this service?

Hannah (: 09:27

Absolutely. And I think just open up the conversation with the professionals that you're working with and saying, I've heard about this approach. 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 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.

Dr Marianne Trent (: 10:20

Great. Thank you so much for that. So trauma is my specialism and the terms, well, they crop up absolutely everywhere these days. They even coaches calling themselves trauma-informed might just have been on one training course or read a book about it and then can legally call themselves. But can you tell us about why trauma-informed care for autistic individuals is so important? Hannah,

Hannah (: 10:50

I think when you are 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 institutionalisation, neglect, bullying, discrimination, there's so many different avenues for trauma, and that really helps us to understand why it's so prevalent. But when working with these individuals and thinking, how can I be trauma informed, it's really just taking the approach 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.

Dr Marianne Trent (: 11:41

Absolutely. And just thinking about my own experiences of working perhaps in inpatient services or people with quite a lot of additional needs with intellectual disabilities or learning disabilities, what might you be seeing? What kind of behaviours, so I'm thinking about someone who is traumatised, might not necessarily exhibit 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 but might indicate that they've experienced trauma?

Hannah (: 12:13

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 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. If 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. I think the best approach to take when working with someone who has been through trauma is to just be very affirmative, to allow people to be their authentic selves and to ask them, 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.

Dr Marianne Trent (: 13:08

Yeah, and I think even if we were admitted to physical health hospital, not having that control, but also how loud everything is. 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. If I'd had some additional needs or I'd been there for a protracted period of time, would've got really old really quick. 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.

Hannah (: 13:50

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 something that's completely fine for you or I might actually be having a huge impact on them. Just trying to think with that empathy and compassion about how do we help this individual in the best way that we can.

Dr Marianne Trent (: 14:13

And I guess a lot of the people we're talking about might be nonverbal or selectively mute. And so it's really thinking about how to really understand what might be going on for them to, I guess, where it's ethical feed into family, friends, caregivers who know this person well as well.

Hannah (: 14:32

Absolutely. And then 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, things that wouldn't be helpful, reading through those documents and making yourself aware of these individual's 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 already 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.

Dr Marianne Trent (: 15:21

Amazing. I think you must've seen me on mute myself when you, 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 that.

Hannah (: 15:33

Absolutely.

Dr Marianne Trent (: 15:34

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?

Hannah (: 15:46

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 from my experience, we are receiving the training and it is 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.

Dr Marianne Trent (: 16:23

Absolutely. Whoever we're working with, I think no bad time is spent talking about the impact of trauma.

Hannah (: 16:30

Absolutely.

Dr Marianne Trent (: 16:31

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?

Hannah (: 16:45

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 in how best to care for them. So we can think about if this is an individual who has maybe been institutionalised 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.

(: 17:41

So this can be if you're doing domestic chores for this individual, so maybe washing or bathing, something that this individual might 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? 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.

Dr Marianne Trent (: 18:43

Absolutely. And I guess I was thinking about someone's lack of control, especially around people that they might really like, 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 they don't know when their favourite 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 it's, I guess just understanding where the motivation comes from for someone to stand there that they've been hurt in the past can be really useful.

Hannah (: 19:35

Absolutely. And I've worked with individuals who have obviously experienced, this 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 a little board with pictures of who's working now, who's working later, or even a visual schedule so individuals can see who's going to be there each day. And okay, my favourite staff isn't here today, but I'll see them tomorrow. And having those visual tools to really help the individual 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, and how can we hold space 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.

Dr Marianne Trent (: 21:01

Absolutely. Really important considerations. And I know in the past A BA 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 oppress. Is it still used to your knowledge in the uk? And if so, how can it be used in a way that is compassionate and effective? So

Hannah (: 21:23

To my knowledge, a BA is mostly used in the charitable sector, and it's not so much used within the NHS. 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 it uses is 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. 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 establish that, okay, they need to understand that they can't be this close. And then when they move back, then you reengage with them and continue to play with them.

(: 22:13

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 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. 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 favourite technique to use, but some people do really like it, and when it's used in the appropriate way, then it can be effective.

Dr Marianne Trent (: 23:07

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 some of it felt a little bit potentially like infantilizing someone that's a grown adult, some of the stuff that you might do with your toddler. And I think maybe some of that aspect is the stuff that hasn't always felt that humane or just that ethical.

Hannah (: 23:30

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 or those kind of thoughts underpinning the theory isn't too great, but without a B, A, we wouldn't have positive support. So it has led to some very important developments in care. So we have to acknowledge the good with the bad, I think.

Dr Marianne Trent (: 24:04

Yes, indeed, we do. Thank you. If anyone wanted to learn more about these approaches, is there a great book or a great resource, or would it just have a read of the nice guidance? Where's a great place to start, Hannah?

Hannah (: 24:16

Sure. So I mean there's all the guidance online that you can look through and just 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 lung disability autism. 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 P-B-S-A-V-A, there's lots of different resources that come up.

Dr Marianne Trent (: 25:03

Thank you, Hannah. And honestly, you are so good. I don't think you realise how good you are. And today I've been a bit of a nightmare as well because I'm pressed for time and I know the podcast always look really seamless. Today has not been seamless at all, and you've just rolled with it. So I'm glad I got a chance to meet you before so that it's not always like that, but you know your stuff and I'm excited to see where your career takes you.

Hannah (: 25:36

Oh, that's so kind. Thank you so

Dr Marianne Trent (: 25:38

Much. Just before we finish, is there any kind of final points you want to leave our audience with, Hannah?

Hannah (: 25:44

Absolutely. So PBS, if you take away one thing from this video, it would be that PBS is about quality of life rather than behaviour, 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, and that's really how we're going to improve people's quality of life.

Dr Marianne Trent (: 26:24

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.

Hannah (: 26:41

Well, thank you so much and 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.

Dr Marianne Trent (: 26:59

Your passion shines out of you, so keep doing what you're doing and brilliant things will happen, I'm sure.

Hannah (: 27:05

Oh, thank you so much, and thank you for having me.

Dr Marianne Trent (: 27:08

Honestly. Thank you so much to Hannah. 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 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 are 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, ease to follow their show doesn't cost you a penny, but it really is helpful if you are an aspiring psychologist and it's your time and you are ready for the next step.

(: 28:06

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 of experts really helping you to uplevel your skills, your confidence in key areas like ccbt, in reflection, in approaches like cat, systemic, all sorts of things, interview skills, preparation, practise, confidence in speaking about yourself and rising to the challenge. You can join that for just 30 pounds 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 your reviews

Jingle Guy (: 29:19

If you're.