[00:00:00] Effie: Hello, everybody, and welcome to today's webinar. I'm Dr Effy Pearson, and I'll be the host for today's Autistica webinar. For those of you who are new to us, Autistica is the UK's leading autism research and campaigning charity. We create breakthroughs to enable autistic people to live happy, healthy, and long lives, and we do this through research, shaping policy, and working with autistic people to make more of a difference.

A big part of that is sharing the latest research and evidence-based practice, which is what we're doing today. I'm joined by Dr Jane Waite and Dr Jessica Mingins from Aston University, who'll be discussing the guides they've created to assist clinicians and families to understand and support autistic people with a learning disability who experience anxiety.

These guides have been created in partnership with Autistica following our previous funding of Jane's work in this important and well-needed area. So before I hand over to our speakers, I have some webinar guidance to share with you. We won't be able to see or hear you in this webinar, but you message other attendees using the chat function at the bottom of the screen.

We'll also share links here when the speakers mention them. Live captions are available on Zoom by pressing the CC button on the menu bar near the chat function. And when speakers are finished, we'll have time for you to ask them some questions. You can add these questions at any time during the webinar using the Q&A function, which is also in the menu bar.

We will get to as many questions as we can in the time we have, and just to let you know that the webinar is being recorded and will be shared on Autistica's YouTube channel, so thank you for listening, and I'll now hand over to Jane and Jess.

Jess: I'll share my screen. Next slide, Perfect. So, as Effy has so nicely introduced us, my name is Jess, and I'm here today with Jane. I'm a postdoctoral researcher at Aston University, and Jane is a lecturer and clinical psychologist. And a lot of the work that we do in our team focuses on anxiety and mental health in autistic people with learning disability, but with a specific focus on, people with more severe learning disabilities, so people who often speak few or no words or might need a high level of support with their daily living tasks, so things like toileting, feeding, washing, dressing, that kind of thing.

So just to give you an idea of where we come from. And we are aware that we've got a very mixed audience today, so autistic people, parents and caregivers, researchers, clinicians, and we hope that you will all find something helpful in this webinar and have something to take away from it.

So, our main aim for today, as Effy has said, is to go through some of the content you'll find in our new resources and our new guides that we've developed, to give you an idea of the kinds of things you'll find in there. So that would be information on a bit of background to what anxiety is, and the things that make anxiety more likely to occur in autistic people with a learning disability, and then some measures and assessments and strategies to reduce anxiety and signposting to further resources and help.

So what is anxiety, and when is it a concern? So, the first thing to say is that anxiety is actually an incredibly normal and natural response to danger in our environment, and it's something that helps keep us safe. Experiencing anxiety from time to time, especially when you have big changes in your life, is incredibly normal.

So, for example, if you are starting a new job or if someone gets a new support worker, something like that. However, anxiety can start to become problematic when it's occurring really frequently. So maybe on more days than not, you're experiencing anxiety and feelings of anxiety. When it's happening over a long, extended period of time, so the diagnostic criteria for an anxiety disorder would say six months or more.

When it's starting to cause a lot of distress for the person experiencing it, so people may experience panic attacks, people with learning disabilities may have increases in behaviours that challenge, including self-injury, which is obviously something we would like to avoid, and all of that can be just really distressing and unpleasant to experience.

[00:05:00] 

And the final thing that we think about is whether the level of anxiety matches the threat, and that's because, as I say, some anxiety around big life changes is normal and natural. But if someone is experiencing heart palpitations, shaking and racing thoughts, increases in behaviours that challenge every time they need to, for example, go to the supermarket, then that's when we need to start thinking about what is it about the supermarket that's so difficult for that person and so anxiety-inducing for that person, because this anxiety is becoming problematic.

So how widespread of a difficulty is this? So, in neurotypical children or children who are not autistic or do not have a learning disability, anxiety prevalence rates are around 3%. Some more recent work since the pandemic finds it a bit higher, so up to 6 or 7%. Children with a learning disability, that rises to around about 20%.

And then for autistic children, it's up to about 40%, and that I think for autistic adults is around 27%.

So another thing that we need to think about when we talk about prevalence rates and how widespread of difficulty this is, is presence of any genetic syndromes. So these are genetic syndromes that are linked to having a learning disability. And they are also often associated with high levels of autism and autistic characteristics.

And each genetic syndrome, whilst it's rare, collectively they make up a really big group of the... or a really big proportion of people with severe learning disabilities. So, you can see here some specific genetic syndromes have much higher rates of anxiety than even autistic groups without these specific syndromes.

So Rett syndrome, 7q11.23 duplication syndrome, Fragile X syndrome, all having really high levels of anxiety, and again, probably also autism in these groups. So we know that anxiety is a widespread difficulty, but why is it something that we should care about? So we wanted to talk a little bit about the real impact that anxiety can have on somebody, and the way that it can restrict their quality of life.

So this quote was taken from a qualitative study, and this was a parent and caregiver talking about the impact of anxiety on the person that they care for. And they said, "It's restricted his life. He's no longer able to go to a local school. He's harmed himself. His hands are all bitten. We can't even go to see family.

We have to very carefully what- plan what we're going to do by way of holidays and things. We have separate holidays now. So yeah, we have to plan, and we have to plan his future as well, and his future options are foremost in our minds." So, you can see here from this quote, the broad-reaching effects anxiety can have on someone's life.

So impacting their education in this instance, their body coming to physical harm through self-injury, impact on ability to socialise and form meaningful relationships with people because they're not able to go out and see people, and then also the impact on the wider family and how they have to plan to account for which kinds of situations this person will find distressing.

The other thing to say is that since the pandemic, we have spoken to a lot of caregivers and I think that has been incredibly difficult and has increased this impact of anxiety on preferred activities. So, things that you might not necessarily expect would be restricted. So for example, someone before the pandemic might have really loved going to the garden centre or the swimming pool or PC World, and they ask to go there once a week, and they go and they love it, and they have a great time looking at all the computers or swimming or whatever it might be.

Obviously, during the pandemic, those things closed down, and then after the pandemic, they were never able to get back to doing those activities that they used to ask for and, and love doing. So when we're thinking about intervening for anxiety and giving strategies to reduce anxiety, that's what we're aiming for, is to be able to get people back to doing the things that they love doing, that they enjoy doing, and to give people as many opportunities to live a fulfilled and happy life as possible without anxiety getting in the way So a lot of the work in our team that we're going to talk about is focused on very individual factors that make someone more prone to anxiety.

[00:10:00] 

But we just wanted to take a moment to acknowledge these broader environmental risk factors around poor mental health and anxiety disorders, and some of these are specific to autistic people with learning disabilities, so communication differences, for example. But a lot of these are also translatable from the non-learning disability and non-autistic populations.

So people experiencing poverty, loneliness, boredom, people who lack meaningful friendships and relationships in their lives, who are subject to stigma and bullying, are much more likely to experience poor mental health and anxiety disorders. And even though a lot of these aren't necessarily specific to autistic people or people with learning disabilities, actually, a lot of these are more common for autistic people and people with learning disabilities to experience.

So we just wanted to take a moment to acknowledge those and get this on people's radar as well, because they're also really important risk factors. So, as I said, in our team we tend to focus on these more individual factors that are linked to anxiety. So this is a study that was run by Dr Georgie Edwards, which is currently under review, so it's been submitted for publication but isn't published yet.

And she looked at 165 children and adults with severe to profound learning disabilities, including autistic people without genetic syndromes, and then people with fragile X syndrome, Cornelia de Lange syndrome, and Angelman syndrome. And what she found was that across all of these groups, higher levels of health problems, difficulties coping with uncertainty, and auditory sensory processing differences are associated with higher levels of anxiety, and that those three factors combined explained about 62% of the variation in anxiety scores across groups.

And the other thing to say is that all of these things, health problems, difficulties coping with uncertainty, and auditory sensory processing differences, are much more common in autistic people with learning disabilities than non-autistic people. So. I'm going to talk you through each of these in turn and how and why we feel like they are probably linked to anxiety.

So one of the first things to say is pain and discomfort we should always consider. If the person you care for speaks few or no words, and there have been any changes to their behaviour, you should always consider whether pain and discomfort could be a potential cause for that behaviour. So, for example, if someone is self-injuring around a really specific site of the body, so, hitting their ear or scratching their chest, that might indicate a middle ear infection or gastroesophageal reflux.

And there are a lot of painful health conditions that are more common in autistic people and people with learning disabilities. So ruling out whether pain is the cause of any of those behaviours is first and foremost the most important thing to do. But the other thing to consider is that pain and anxiety actually often also interact.

So if someone has a chronic long-term condition that can be anxiety-inducing because it is uncertain, and painful, and unpleasant to experience. That can lead to feelings of anxiety. And then we also know that the gut-brain connection is especially strong, but also just through your nervous system and the way it all works, that experiencing anxiety can then, in turn, worsen painful health conditions.

So if you can reduce someone's pain by managing any chronic long-term conditions, that should also, in turn, help to reduce at least some anxiety. Because as I say, pain is inherently just unpleasant for anybody to experience. and I just wanna point you really quickly to the FLACC Pain Scale.

So this is a little scale. You can see it really small in the corner there. But if you Google it, you will find loads of different versions formatted of the same content, basically. And it covers face, legs, arms, crying, and consolability, and that can give you an indication of if somebody who speaks few or no words is in that moment experiencing pain. The next factor that I wanted to mention was intolerance of uncertainty, because as we described before, we think that this is implicated in anxiety.

So some people just naturally have much more difficulty coping with change and uncertainty in their lives than other people. And this is something that we find in people with anxiety disorders, that it's really common in anxiety disorders and seems to drive a lot of different anxiety disorders. So not just in the autistic groups.

However, this is also something that is really common in autistic groups, and we think that might be why, for a lot of autistic people, anxiety is problematic because life is uncertain, changes happen, and the more well-equipped you are to deal with those naturally, the more or the less anxious I should say, you are going to feel about your life in general.

[00:15:00] 

And then the final of these individual factors would be sensory processing differences. So, people can experience their senses in all different ways, and some people may be hyporeactive to sensory stimuli, and that means that they experience their senses as dulled or weaker than other people might experience.

So, if someone was hyporeactive to, for example, light and visual stimuli, you might see somebody holding light up to their eyes, like getting the torch out on a phone and holding it up to their eyes, and that is because they enjoy that sensory input. Or they might crave hugs or deep pressure because they enjoy the feeling of that deep touch on them.

A lot of the anxiety literature focuses on hyperreactivity, which is this the experience of senses as stronger or more intense than other people experience them. But it's just important to know that hyporeactivity also exists, and often in combination with hyperreactivity. So, someone might be hyperreactive to- sounds but hyperreactive to touch, for example.

But you can see how this could really play out and make somebody anxious when we look at this example over here of a public toilet. So, someone without any sensory processing differences, public toilets aren't that pleasant, but you go in, you go to the toilet, you wash your hands, you leave, and you don't really think anything of it.

To somebody with a sensory processing difference, especially hyperreactivity, there are so many sensory things happening in this environment. So those horrible fluorescent lights that are everywhere can be really bright, really unpleasant, and really aversive. There might be bad smells coming from other cubicles, and if you experience smells as stronger, that could be really deeply unpleasant.

It might even make you feel nauseous. The hand dryers are not only loud, and obviously therefore aversive, but also unpredictable, especially if you're in a stall. You can't see when someone's approaching it to turn it on. The feeling of water on your hands, if there's not something you can dry it on. Slippery floor underfoot or maybe even a sticky floor underfoot can just be incredibly unpleasant and distressing to experience.

And so naturally, if you're going to be out and you might need to use a public toilet, you might feel anxious about it because it's going to be an unpleasant experience for you. And the final thing I'm going to cover before I hand over to Jane is changeable factors linked to anxiety. So, these aren't necessarily as causally linked to anxiety in the same direct way as those other factors we've talked about.

But the way I like to think about these is that I feel they lower people's tolerance for experiencing anxiety, but also low mood, irritability. You name it. And a lot of these are linked, again, to discomfort. And actually, a lot of us can probably relate to these, right? Like, when I'm hungry and thirsty and I've not slept well and I'm too hot, I'm going to be irritable, I'm going to be anxious.

And that is, again, quite natural and normal. The other thing, though, to say is that, again, for autistic people and people with learning disabilities, they may be more prone to poor sleep or temperature dysregulation, and some of these are more specific to that group anyway. So if you're ever having a day where the person you care for you think generally has been fine recently but today they seem to really be struggling and you don't know what's going on with them, it's always worth having a think about if any of these things have happened recently.

So have they had enough to eat and drink today? Are they tired? Are they too hot, too cold? How did they sleep last night? Have there been any recent hormonal changes around menstruation, or puberty, or even menopause in slightly older groups? Have they experienced any pain today? Maybe even they just stubbed their toe an hour ago and it's still hurting.

Have they got an illness at the moment, an acute illness? Has there been any changes to their medication? Are they epileptic? Changes to their sensory environment. Any changes to the routine recently? All really important to consider how that can impact somebody.

So I am going to hand over to Jane now to cover the avoidance cycle, how anxiety is confirmed and maintained, and then some strategies and resources as well.

Brilliant. Thank you so much, Jess, for those first few slides, and that's really clearly taken us through these risk factors or risk markers that we know can lead to anxiety. The other factor I really want to talk about is really... So, what Jess has been speaking about are the things that often can drive up the likelihood of anxiety or trigger anxiety.

[00:20:00] 

But the avoidance cycle is largely what happens after someone starts to feel anxious. And so it's really natural, as we all experience this, and we also see this across all anxiety conditions, that when people are worried, or they're anxious about something, the natural inclination in that situation is to want to get out of that situation as quickly as possible and to protect yourself from that situation.

And that makes complete sense, because as Jess mentioned at the start, anxiety is a biological mechanism that really has evolved to keep us safe. But we also know that in anxiety conditions, that avoidance can sometimes maintain or perpetuate the anxiety over time. So to give you an example, if I woke up this morning having not had a good night's sleep, similar to some of those factors that Jess was talking about before, maybe I'm a little bit unwell. And maybe my anxiety for doing this presentation today to you all peaked a little bit higher than it normally would when I was talking to a group of people.

I might be more motivated on that given day to want to avoid. Perhaps email Autistica, Effie and Mercedes, who've kindly put on the presentation today, and say, "Actually, you know what? Today is not a good day to do this." but ultimately, that avoidance, if I were to do that over time, would drive up that anxiety.

And next time I came to do a presentation would potentially mean that I was more anxious than the time before. And we see that playing out across all different types of situations. So as soon as we are in a situation or anticipating a situation that makes us feel anxious, there are changes in our body, there are changes to our heart rate.

We might feel hot, we might feel sweaty, and naturally, we become much more hypervigilant to threat. We are on the lookout for danger, and then that increases the likelihood of us wanting to then avoid the situation. And over time, the more we do that, the more likely we are to lose confidence that we can manage that situation.

But we also potentially as well lose the opportunity to learn that that situation didn't result in the bad outcome or the frightening situation that we potentially might have imagined. And hence this deepens the anxiety over time. Now, the avoidance cycle is much more complex when we start thinking about how we might intervene with this type of cycle with an autistic child or an autistic adult.

Because, as Jess has mentioned when she was discussing this previously, we have to really think carefully about some of those sensory differences and other differences that we might observe in autistic people that could potentially mean that people are avoiding situations for very good reasons.

So, for example, if you are going to go into a public toilet and there is likely to be a really loud, aversive hand dryer that goes off, that's going to be painful, then of course avoiding that situation makes complete sense. However, if over time, you're now avoiding all outings where you might have to use a public bathroom, and that means that you aren't able to access the situations that you used to really enjoy, then that is much more of an anxiety difficulty.

And the management of that then comes down to thinking about how do we ensure that somebody is not having these really aversive sensory experiences, or reduce the impact of those while, very, very, carefully and gradually trying to reduce some of those avoidance behaviours that might be perpetuating anxiety over time.

Can we move to the next slide, please, Jess? Now, we're very aware as a team at Aston University and within the Cerebra Network, that there are currently no best practice guidelines or consensus guidelines on the anxiety management and as- for, and assessment for autistic people who have learning disabilities.

There are broad guidelines on the management of different mental health conditions and different types of anxiety, but nothing that is specific for the needs of the people that we are supporting. And we're also very deeply aware, and have been for a number of years, that when autistic people with learning disabilities, particularly those with moderate to severe intellectual disabilities, enter into clinical services for support with anxiety, there are often not appropriate assessments, so things like questionnaires, interviews, for example, for the assessment of anxiety in these groups, which means that people might fall through the gaps. Anxiety might not be recognised. 

[00:25:00] 

Next slide, please, Jess. And so we identified that there were really these two areas of need that we needed to try and address. We needed to increase the number of resources and assessments for clinicians and make sure that there were resources that were targeted at parents and caregivers and autistic people to raise awareness of anxiety and anxiety management strategies.

And that we also needed to work closely with clinicians to help clinicians to recognise anxiety and how it might look a little bit different in autistic people with learning disabilities. Okay, can we move to the next slide? Now, as soon as we are thinking about identification of anxiety in people who speak few or no words, we ultimately have the difficulty that it's not always straightforward to simply ask the person how they're feeling.

Now, sometimes it is. Sometimes the person is able to articulate and label their feelings to, to communicate those verbally. But other times it's not clear-cut. Maybe the, the individual might struggle to label their emotional experiences, or they might not, have the words to be able to tell somebody how they're feeling.

And so what that means is that often as clinicians, we are left with a situation, and parents are as well, who might be looking for signs of anxiety in their children or the people that they support with what we can see, what we can observe. And so that comes with a number of challenges. So one of the challenges is that there can be overlap in some of the signs of anxiety with signs of other signs of distress, such as pain, which Jess spoke about earlier, for example.

Or there can be overlap with signs of anxiety with autistic characteristics- as I spoke about when we thought a little bit about sensory processing anxiety. So sometimes it can be quite difficult to, to pick up this apart. Other times it will be very clear that the person is experiencing anxiety, and so parents are often best placed to know and are able to label that.

So certainly don't want to say it's, it's always something that's hidden and difficult to spot. But for some children, young people, and adults, it can be missed because people may not be looking for it in quite the same way or have those tools to assess it. And we know from research that some of the signs that somebody might be experiencing anxiety are often the avoidance that I discussed. So, refusing to enter into situations which may be a really legitimate refusal because that person is really frightened and really, really worried about that situation. It might be changes to the person's behaviour, so they might start to ask more repetitive questions or ask more, or go over the same information over and over again, wanting to have that reassurance about what's going to happen.

And there might be changes in their body, so they might look more flushed. They might pace more if they are an ambulant person. They might move about more, be more restless. They might hide behind things as well as another form of avoidance. So there are lots of potential different signs that there might be anxiety, but there's no sort of definitive sign that anxiety is present.

Next slide please, Jess. So as I mentioned, there are a lack of appropriate tools. Many assessment measures don't consider the communication differences that are really important to consider for many autistic people with learning difficulties. And they may ask questions about how the person is feeling inside, which might be very difficult for parents and carers to report on, for example.

And so, assessments generally should draw on a broad range of information when coming to a conclusion about whether somebody might be experiencing anxiety. So they should be multi-informant, so they should be assessments that take into consideration the views of the parent-carer, the autistic person themself, teachers, friends, and support workers.

[00:30:00] 

And they should be multi-method assessments as well. So bringing together interviews, questionnaires, and behavioural observations is often really important. Now, because we know that there was a specific gap in the assessment tools that were available. In 2017, we started a project, so it's a long time ago now, to develop a screening tool for anxiety that would be valid and reliable for children and adults with learning disabilities, but that also would be sensitive to the needs of autistic individuals.

That is a measure called the CLASP-ID and that has now been published, and we provide that measure for free. There is a manual available, which we provide alongside that with normative data. And this measure has now been adopted in NHS services in the South of England and some in the North of England as well, where it's been integrated into care pathways and where we're collecting data on how that's being utilised and getting feedback on that measure.

But so far, that's going very well, and I'll provide you with a QR code at the end. So if you want to download that, if you are a clinician working in a service, you can request that as an assessment tool. As well, there is the ADIS-ASA, which is the Anxiety Disorders Interview Schedule with the autism addendum.

Now, this is a measure, not developed by our team, but which is a measure that's been adapted and has been used for autistic individuals with learning disabilities. Now, there is a cost for this questionnaire if you're a clinician accessing this webinar and you do require training, but it is one of the few interviews that has been adapted to be appropriate for the population that we work with, of individuals with learning disabilities who are also autistic individuals.

Okay, next slide, please, Jess. Okay. Now, at the end of the webinar, and in the follow-up information, you will receive some links to the Autistica Tips Hub where we have uploaded the guides that we've been talking about today that we've developed. There's a guide for parent and carers, and there is a guide for clinicians, that focus on covering lots of the information that we've already provided in terms of background information.

But also then focus on specific strategies that we know are evidence-based and effective generally for improving anxiety in people with learning disabilities. But also these are discussed taking into consideration the needs of autistic people. So I'm just going to quickly run through some of the things that you will find in that guide.

I'm not going to go into all of them in great detail, because everybody's situation will be a little bit different, and what they need to take away from that guide will be different. But so you've got a sense of what is covered and what you can read more about in that information. And the first of those strategies is increasing communication.

Now, it goes without saying that if a person speaks few or no words often the  world is potentially more chaotic for that individual, because they may not be able to express their needs in a way that other people around them understand. So it's about thinking really carefully about what communication strategies are going to be a good fit for this autistic person with an intellectual disability or learning disability.

And how should that communication be adapted? So that it is communication that everybody around the person can make sense of. So it, it is communication that is meaningful. And so that's really important because of course, if we can't make ourselves be understood or other people are not understanding us, then of course that increases anxiety for a person.

Emotional regulation strategies are really important to try to teach and embed early on for all children. So not just autistic children, but all children. But it's particularly important, I think, for autistic children when we know that emotional regulation may be something that children may need more support with.

Now, having an emotional regulation strategy, again, this is very specific for the individual themselves in terms of what's going to work for them. But it can be things such as having something to squeeze or hold. [00:35:00] It could be something such as learning to do a very deep belly breath and then releasing that very, very slowly.

It could be something such as having a favourite object which the person keeps with them. It could be simply doing 20 star jumps on the spot when the person starts to feel dysregulated, starts to feel anxious. But identifying a strategy that fits for the individual is really important, and then working with that individual to encourage them to practice that at times initially, when they are feeling more calm, more able to execute that strategy.

And potentially reminding that person gently to use that, that strategy at times when they need to apply it. And for autistic children,  repetition and structure around this can be really important because it can take a long time to embed these types of strategies. We all have emotional regulation strategies that we use to help calm ourselves.

Many of those strategies have been embedded early on in life and can still be learned later on in life as well through that modelling and prompting from the people around us. But I think sometimes these strategies can fail because it might be that it's identified that a young person needs an emotion regulation strategy to help around situations where they might be feeling anxious.

But then they're given some equipment, maybe they're given a bag with a fidget toy and some sensory toys to help with regulation. But they might not be necessarily taught how to embed those, how to actually, the prompts, to learn those things so that they're easy to reach for at the time when that individual needs them.

So the guide talks about this in a bit more detail in terms of those strategies. And around these areas, it's really important to say as well with communication and with these types of emotional regulation strategies, that input from professionals such as speech and language therapists, occupational therapists, is really crucial and key.

So, if your child or an adult that you support is anxious, making sure that those appropriate referrals are sought, and I'm going to talk about that in a moment as well. And then, as Jess has already mentioned, there are those sensory differences and making sure that they are appropriately managed, and people are supported, is really important.

Again, thinking about this early on is good because it essentially reduces the likelihood of anxiety developing. But also at any point, across somebody's development, thinking about what are their sensory needs and how do we embed strategies that are going to reduce distress when people are accessing environments.

So again, we cover sensory adaptations in the guide. Some of the things that are talked about in the guides are flexible scheduling. Now, this is really interesting, I think, from the point of view of strategies that we use to support autistic individuals or which autistic individuals rely on to help structure their day and their routine.

So previously, a lot of advice was always around ensuring that the person had structure maybe has some form of visual timetable where they can see what's going to be happening at various times in the day. And this level of structure helps to increase certainty and helps to reduce anxiety, which makes sense.

Now, it's, a really good practice to be thinking about that structure, particularly when somebody might be experiencing anxiety. But as Jess mentioned, one of the things that can lead to anxiety is intolerance of uncertainty, but we also know that avoidance of the things that make us anxious can make anxiety a little bit worse.

So if people are always avoiding uncertainty, there's a possibility that over time that can make anxiety a little bit worse in those uncertain situations, and providing too much structure is essentially avoiding uncertainty. So it becomes a little bit more nuanced here in terms of thinking about visual timetables and structure.

And flexible scheduling is really about using these types of tools, but making sure to schedule sometimes some unpredictable activities. If you can see an example on this slide at the bottom of what this might look like, but this isn't to introduce an activity, an uncertain activity that's going to be a really worrying or frightening activity.

[00:40:00] 

Certainly, this afternoon activity where there's a question mark on this slide wouldn't be going to the dentist, for example, or the hospital trip. This might be a planned activity that's going to be fun, it's going to be enjoyable, but it is something that on the timetable is a little bit uncertain.

So what you're doing in those situations is introducing a little bit more uncertainty in a way that's manageable for the individual. But again, doing this with support is always really important, and we cover that in the guide as well. And then I think the other place where balance is really important is making sure that people have time, they have a quiet space, they have decompression time.

If they're going to events, there's a place that they can take themself off to, to have some time to regulate, whilst balancing that with considering what we've talked about around avoidance and making sure that, where possible, working up to doing small things that are valuable, that the individual values, the autistic individual values to help reduce any avoidance that might be perpetuating some of that anxiety.

Okay. So I've talked broadly about strategies. But, of course, when we talk broadly about strategies, it is important to acknowledge that for each autistic individual, there will be a need to really tailor strategies to that individual's need. And so, we would always strongly recommend that if you are supporting a person who is experiencing anxiety or if you are a person who's experiencing anxiety, that you reach out through your GP and ask to be referred on to the appropriate support locally. And depending on where you live, if you're supporting a child, that might be CAMHS, it might be CAMHS LD, it might beyour learning disability community teams for adults with learning disabilities, or it could be through specialist services such as occupational therapy or pediatrics.

There is a special educational needs and disabilities information advice and support service that can offer advice and help in terms of finding the right service for people aged zero to 25. And, we do recognise how hard it can be to access services and to get support to know which service you should be accessing as well. So that service can be very helpful from that point of view. But also, I think it's important when approaching the, the GP and asking for a referral that it's acknowledged the impact that the anxiety is having on the young person and the importance of timely support for that individual as well.

And we cover accessing services and signposting within the guides as well. Next slide please, Jess

So in terms of the resources that we've spoken about today, you can download the CLASP ID following the QR code. So this is more for clinicians that might be listening. So that's the anxiety measure that we've developed in our team. 

You can go to the QR code and request to be sent a copy of the manual, or you can go to Jess and request that directly, and that includes all of the normative data and everything that you need for scoring that and the information on the psychometrics of the tool and how it was developed. If you're interested in the other measure we mentioned that is not our team, but there's some information about Connor Kearns and you can email directly regarding that if you're a clinician.

At the bottom of this slide, it talks about the Parent Anxiety Guide and the Clinician Anxiety Guide. These are the two new guides that we've developed that are available through the Autistica Tips Hub. Now, the Autistica Tips Hub is an app that you download on a mobile device. And it has loads of useful information in there regarding support for autistic individuals and their families.

So that would be the place to go to find this information, and there will be that follow-up email after this webinar that talks about that. And then also the other thing that's listed on this slide is the behaviour checklist. So this resource was developed for the charity Cerebra and it is a really, really useful checklist for if an individual is showing behaviours that challenge, so self-injurious behaviour, for example.

We've talked about it today in the context of anxiety, as anxiety potentially being an underlying [00:45:00] factor that can lead to behaviors that challenge that you might, might observe in some individuals. Now, that is not the only reason that those behaviours occur, and we don't want to give the impression to anybody who might be listening in, particularly parents or carers, that it's always anxiety.

It isn't. There are lots and lots of reasons why we see behaviours that challenge. The behaviour checklist is really useful because it, it lists all the different factors that we know are associated with behaviours that challenge in people with learning disabilities, and it gives a way for parents to rate each one of those and then use that docent as a helpful docent to take to their GP, their pediatrician, or their clinical team, whoever they might be working with, to advocate for some support around that area or for assessment of that area.

So that's definitely something to look at as well if you're supporting somebody who shows those types of behaviours and you're trying to work out what might be driving them. Next slide, please. So I think that's the end of our slides, but I can see in the stream on the right that there are lots and lots of questions coming in.

So it- we've got about 10 minutes left, so it'll be really helpful, I think, to have a look at each of those and talk through them with everybody now we've got the time to do that. 

Effie: Yes, Thank you, Jane, and Jess for that really informative and detailed presentation. I know there's a lot of information in there for us all to take away and digest.

We're going to move on to our Q&A's now. And so the first question that came in from Heather is, "How straightforward is it to distinguish anxiety from dysregulation?" Yeah, so it's not that straightforward, I would say to disentangle any emotional state.

Sorry, Jess. I've just jumped in, and you may want- No, that's okay. ... to take this question. I'll defer to you for the next one. In people with particularly moderate or severe intellectual disability, the presentation of emotion is often behavioural.

And in Jess's PhD, actually I should defer to Jess, she's looked at different ways of measuring anxiety and trying to look at the convergence between the different methods of assessing anxiety, and, and how- how difficult it is to bring that information together in a consistent picture. That being said, I think lots of the strategies that work for emotional dysregulation should be in place when we're supporting people with anxiety.

So I think often we're working at our best, a clinical estimate of what we think might be driving the behavioural presentation that we're seeing, and then we're working with, well, let's look at these, this toolkit of strategies that we have, and which ones shall we put in place, which are going to enhance this person's quality of life that are going to lead to, as Jess said at the start, more meaningful activities.

And is it helpful in this instance to think about this in terms of anxiety? Does that help increase? Does it open up options for what we might do to support that person? And if it does, then are those strategies working? So it's a bit of an iterative process between our best clinical estimates, and then monitoring whether or not the anxiety interventions are working in the way that we would expect them to.

And then maybe then modifying our formulation on the basis of the feedback we get from the interventions. It isn't straightforward. It's a bit of a dance. But we're holding both of those possibilities in mind. 

Effie: Perfect. Thank you. The next question we have is, do you have the screening tool and the clinical interview in a Spanish translation?

We don't have the CLASP in a Spanish translation, I don't believe. Although someone did contact me a while ago about translating a version of the CLASP. I'm not sure if that's in the works and how far along that is, but I can get back in touch with them and see. But I can't remember what language that was off the top of my head.

I'm not sure about the ADIS either. As far as I'm aware, both are only available in English at the moment. It's certainly something we would like to do. Yeah. And the translation of measures is always really complicated because, you'd think now that we have all the [00:50:00] technology that we have. So for example, we could take the CLASP and we could, pop this into ChatGPT, and it'd probably translate it for us relatively well.

But one of the problems we then have is that sometimes when you reverse translate that, you've lost the initial meaning behind the questions. So translation can take quite a long time for clinical tools. And we'd want to do it really well and really properly to make sure that we were picking up exactly the same construct that we know that we're measuring in the English version.

But yeah, it's certainly something we're hoping to do as time goes on because we'd like to see it being used much more widely than just where English is the primary language in a country. 

Effie: That's great. Thank you. The next question that we've got is someone has been advised that CBT is not as effective for those with autism. What's your opinion?

Jess: My opinion personally would be that it can be true, but that is very much dependent on the person delivering the CBT. And there is a lot of evidence out there that certain adaptations can be made to CBT to make it much more accessible and effective for autistic people and people with mild learning disabilities as well.

So especially like sensory adaptations and just the clinician giving the therapy or delivering the therapy, being aware of the characteristics of autism and how that might be feeding into things. Because again, I guess the thing is that CBT framework assesses that a lot of your anxieties are disproportionate, unwarranted, and for autistic people, a lot of the time, especially around those sensory needs, they are completely understandable worries.

But a good CBT therapist should be able to deliver CBT that is effective, in my opinion, from what I've read. 

Jane: Mm-hmm. And I, yeah, I agree with exactly what Jess has said. And I think that I think also depends on the individual themselves, from the point of view of what's a good fit in terms of the therapeutic model for that person, which a good therapist ought to be assessing at the point when they're forming that therapeutic relationship with somebody.

So there's something called alexithymia, which we see more commonly in autistic individuals, where there might be more difficulty labeling emotional states and actually being able to identify those, which in the CBT model, what you're doing is you're linking emotions, behaviours, and thoughts together and then trying to reframe some of those thoughts so that it impacts the emotional experiences and, and then also changing your behaviour as well, which then has an impact on your thoughts, et cetera, et cetera.

And so that recognition of those internal states and that labelling is quite important. But as Jess says, adaptations, sensitive adaptations, are appropriate. And I think we shouldn't be thinking that any therapy isn't appropriate. I think it's a case-by-case basis, really careful assessment and making sure there's a really good fit for that individual.

Effie: Perfect. So definitely that individualised approach and adaptations to the intervention strategies. Thank you for that very detailed answer. Just conscious of time, so hopefully we've got room for two more questions. So the next one is: How do you rationalise the need to go into situations that are anxiety-provoking for someone with severe learning disabilities?

So that's tough, isn't it? Because if somebody has a severe learning disability, then explaining the process of what we call gradual exposure, so gradually getting back into those situations, can be quite difficult in terms of the rationale underpinning that. Now, for some individuals, adapted communications using things such as a social story to explain what happens in the situation, and what the expectations around how they might feel in the situation, why they might want to get out of the situation and stay.

[00:55:00] 

And the benefits of staying in the situation might be appropriate and could definitely work for some individuals. But for other individuals, I guess, it's going to be difficult from a communication perspective to be able to break that down in a way that the person understands.

And so the thing with ... I think this is where it's really important in these situations to work with a clinician, because when you're working on, say, for example, some of the children that we'd worked with who had stopped going out after the pandemic. From looking at what they previously really enjoyed, such as PC World, Garden Centre, for example.

Looking at those situations, it seems that the pandemic is the main intervening factor that led to them not accessing those things anymore. We communicate in the best way we can about the strategies to get that person back into that situation.

But what we do is really break it down into such small steps that it is done so gradually that the person may not necessarily experience distress. So for example, for the person who wanted to get back into the garden centre, the family spent a bit of time just being in the car park near the garden centre for a while doing some preferred activities, and then getting out of the car and just spending some time around in, the car park, and then looking at some things outside.

And that takes time, and it's a lot of resource for the family. But, ultimately, they could see a gradual process, and the person with severe intellectual learning disability wasn't distressed in any way during that process. Communication would be like, "We're going to the car park today," or the communication would be, "We're going to look at the plants outside the garden centre."

So it wouldn't be the whole structure of the intervention, but it would be the bit that they were working on that given day, and that was easier to break down and explain and work at a level that didn't cause distress. So that's how we would approach that in those types of situations.

Effie Great. Thank you for sharing that. I've just got an eye on the time. So I think that's all the questions that we are going to have time for today. Again, thank you so much for all of your questions and for attending today, and a really big thank you to Jane and Jessica for sharing their work with us today and answering the questions so thoughtfully.

It's been an absolute pleasure having you with us, and thank you so much. And have a great day.