Autism & Mental Health: Anxiety, Meltdowns vs Shutdowns & What We Get Wrong

0:00Welcome to The Hidden 20%, our neurodiversity charity on a mission to rewrite the future for people who think differently. Together with you and an eclectic range of brilliant guests, we can break the cycle of silence by smashing outdated stereotypes, exposing the myths, and sharing the most up-to-date truths about what it really means to be just different, not deficient. The best way you can help is really simple. Subscribe so you never miss an episode, and if you can, donate to our charity through the link below. Enough preamble. I'm Ben, your host. Let's get into today's episode.

0:48Anne, thanks for coming and sitting down. Am I right this is the first time in a studio for you? Yes. How do you feel about that? Fine. Psychologists have always told me that fine is not what you say when you're asked how you feel. That's the socially conventional answer. Insecure, neurotic and emotional, I think I was told about 20 years ago is what that stands for. Yeah, I think I'm feeling as you would expect. Why did you want to come on? Well, you asked me, which is really nice. And also I've had to listen to the podcast. I think it's superb. I like the message. I like the themes. I like the kind of direction of travel.

1:26It's one of the better podcasts I've listened to. Thank you. How long have you been in this neurodiversity space? Oh, since my first assistant psychologist job, which was there at the Maudsley Hospital. So, oh my God, I didn't work out the number of years. About 30. Wow. Including training. And can you give me your sense of what we understood then and what we understand now? I mean, it's changed enormously, hasn't it? What a huge question. When I started my post-qualification career in 2003, I went straight into a specialist service. It was called Neurodevelopmental Condition Service now. And so it wasn't just autism at all, but autism formed a large part of it.

2:09And as I say, it was a very specialist service. So local services would refer in to the service and, you know, ask for help with complexity. But back then we would see cases which now, with our current understanding of autism, we would say, well, it's clearly autism. So that's what's changed, I think, is that local services and our understanding of autism has grown greatly. So I think people are much better at picking it up now, including self-identification, of course. And I'd say a significant portion of our referrals are driven by, and I work with children and young people, they're driven by the young people themselves.

2:40Really? Yeah. There's much more increase in understanding and knowledge, but also acceptance, which is the important thing. so people are coming thinking this is an explanation this is going to help me as opposed to god i think i've got this condition and i don't know but you know maybe you can help me it's like i really need to know and i think this could be really positive for me it's so interesting you say that because i'm usually asked why did you go for an assessment what was going on was stuff really bad and i know that's for some people that is absolutely what happens my story was no I'm really curious and I'm looking for understanding and I'm looking for some answers or I've got some questions I don't know whether you're going to give me the answers but I love that people can feel empowered enough to kind of go actually no can you help me with this I'd like to find out do you think that's a generational thing possibly as I say I think it's the increase in information and just the change in societal attitudes as well which have been enormous I think we're going to speak a lot about that and that's absolutely key when we're thinking about mental health as well yes i guess when going back to your question of why i wanted to come on as well was because it's a real opportunity i think i think we're a real turning point in our societal understandings of neurodivergence and one of those turning points is the recognition of mental health challenges that are associated so there's a lot that's improved but we've still got quite a long way to go do you see mental health challenges downstream of unrecognized and unsupported autism for example so both okay so i also do diagnostic assessments as well and particularly for girls but not exclusively girls people will have had mental health difficulties and then either they themselves or a therapist or somebody school somebody will have raised i'm wondering about autism.

4:33And the nature of the referrals that I get, they show much deeper understanding of neurodiversity and some of the challenges that when people have neurodivergent related difficulties, how that presents and why either a diagnosis and or therapy indicated. But the therapy question is also important because people may have been referred for, oh, mental health problems, go and get some therapy. The therapy was either not helpful or potentially harmful. sadly. And then people might be asking questions about, actually, maybe there's some neurodivergence here. Yeah. And where does that sit with children and young people then in terms of people earlier in life?

5:13I mean, sadly, mental health problems can start really young. I mean, that was shown by a National Autistic Society survey about back in 2010, which is a long time ago now. What's anxiety, mental health, etc. So you might think, well, the parents are just talking about their autistic features that they noticed, etc. But I think parents are very clear. what is autism and what is mental health. Okay. Do you think the public understand that? I don't know. I mean, the narrative of mental health as well, obviously, has increased a lot with social media, with increased awareness, etc. Do the public know?

5:45I don't know. I think we'd have to ask. Yeah. And when we talk about mental health as associated with autism, I know you've already mentioned two things, depression and anxiety. what else do you see other mental health challenges that specifically with autism I guess that are coming up that you see in your practice so very commonly obsessive compulsive disorder as well OCD that does require some quite careful unpicking as well and then also eating difficulties yes challenges in that field a lot and I know you've had a whole episode on Arford which is really really interesting yeah and then underlying a lot of these difficulties and challenges is trauma but actually thinking about trauma-informed approaches not just therapy but approaches is so important.

6:34What does that mean trauma-informed? Trauma-informed is when you have an understanding of rather than treating what you see as it were like anxiety let's do CBT for anxiety it's what led into that it's thinking about the conditions which potentially traumatize someone in which we need to undo I suppose some of that trauma. So we'll probably think a bit about education and young people who have had really adverse experiences in education and effectively have been quite traumatised. So sometimes I'll get referrals for, you know, this child is out of school, we need to get them back in school, can you therapy them back into school?

7:08And I'll generally say no. Really? They're like, can you fix this and send him back? Yeah, less and less, I think now, but certainly that happens a lot. And generally, you know, my response will be, we need to understand why this young person's out of school and what they need not just let's just get them back into school yeah but also like what come for a few sessions and i think that was the old way of thinking i'd like to say it's the old way of thinking yeah but still yeah do you see a lot of excluded children is that a common pattern yeah yeah definitely and why are they excluded sometimes through choice when i say choice i'm saying that in inverted commas is in voting with their feet as in i just can't cope with this anymore yeah Yes, young people who have been excluded, sometimes exclusion, exclusion, as it were, like formally excluded and sometimes excluded via, I don't know quite how to put it, but via inclusion, as in put in a separate space or something like that.

8:04Or they've been excluded in a sense from classroom learning or access to the curriculum. Yes, or quote unquote at school. Exactly, yeah. Yeah, which is, I think that's the worst, isn't it? Kind of it's one thing to go, don't come to this school or I don't want to go to the school. it's another one to go you can kind of be at school but not with us yes yeah and I think again that's hit the headlines I mean that's not just sort of societal understanding but actually it's been in the news and there's been court cases and so I think that is probably changing in terms of attitudes within education about what does inclusion really mean yeah which is really positive but I guess I'm thinking across the span of my career yeah and certainly I have in the past worked with young people who the parent would have told me that, you know, they spent much of it in isolation.

8:53Why are more kids being excluded and not wanting to go to school? I think possibly previously there was a sort of culture of you just have to. Yeah. And I think as a society, we saw how things can be different. There's more, I suppose, awareness of the kind of the effect of the impact of how you spend your day. So for example, my early years in my career, I used to have a lot of conversations with schools saying, but we don't see a problem. It must be a home-based problem. Let's refer for family therapy. I'm pleased to say that I rarely have those conversations these days. Oh, that makes me really happy.

9:29Yes. Although I'm sure there are people who still do. And so I don't want to minimise those experiences. But certainly I've been hearing it less and less. And I've been working with a lot of schools who are like, we don't see a problem, but we know that doesn't mean there isn't a problem. Wow. Which is brilliant. Yes. So I'm seeing less and less of kind of young people who are formally excluded, as it were, but more and more, I suppose, of people who are recognising that either their current placement isn't working for them or that they need some significant adjustments. And until they've had those significant adjustments that they really can't manage.

10:00And can you liaise with the school on that? Yeah. In terms of those adjustments? I would say that's a huge part of the work that I've done in the past and present as well. So I've been a witness at tribunals and I always thought I was an amazing witness because because we always won our tribunals, but I've since found out the figures are that 97 % of tribunals are won by parents anyway, which says a lot about the system. The number of tribunals has gone up as well. Massively, yeah, definitely. So, you know, things do need to change in that area. So, you know, it's quite good that there are some changes afoot.

10:31I know there are concerns about those changes as well. But it's good that people are thinking about revamping the system because it has to change. But these are tribunals to get support and adjustments for children at school, correct? Yes. And sometimes they are for a complete change of placement. OK. But yes, absolutely. It's for getting that, usually for having a legal document, the education and healthcare plan in place. So obviously my role is in the health bit. So whenever I've been involved, it's always been, regardless of the cognitive abilities of this young person, the reason they're not accessing education is mental health.

11:06What's your sense of sort of schools and mental health these days? So schools are so much more aware now of mental health and very, very supportive, I think, mostly. In the most, I'm sure there'll be parents who have not had that experience. But in the most, I've worked with some fantastic teams, SENCOs and general awareness. People are interested. They want to learn, which is great. Yeah. And I take a lot of hope from where we've got to on mental health in terms of less stigma, less stereotyping, more understanding, more acceptance. We can talk about it. Yes. Yeah, even from when I grew up. So I kind of want that for neurodiversity, obviously, as well.

11:49We can talk about this stuff. We can have a conversation about it. But I feel like we could look to mental health more as a precedent for changing perception. And if you're going to support someone at school with their mental health, why can't you support them being autistic? Like, why not? Absolutely. And those two things are related. So if somebody's autistic and you're putting the right supports in place then you'll be inadvertently helping them with their mental health anyway. Yeah. So a lot of what we're going to talk about presumably today is about prevention and not just amelioration. No.

12:23How best can we support autistic people with their mental health? So autistic people themselves I think have said that in various kind of qualitative research projects and also in my clinical practice when I've asked people what worked what didn't with therapy they might have had before the number one thing is an understanding of neurodiversity and that is because if you put certain adjustments in place and sometimes it can be really small adjustments you can prevent all manner of things and that might be you might prevent practical things like not attending school so for example small adjustments in uniform can make all the difference why would somebody have to wear a polyester shirt buttoned up to the neck Why is that so important?

13:03And if it means that, you know, they're having a meltdown before school, parents are kind of really struggling to get them in. Not only is that unpleasant for everybody, but what's the impact on that child's learning? What sort of a way is that to start the day, for example? So that's just an example of a small adjustment or might seem like a small adjustment. And what works for one person could be completely wrong for another person. So that's the other thing. So that's why I quite often, rather than give sort of stock of recommendations, I mean, obviously, you know, we do tailor our recommendations in our reports.

13:32But often I want a conversation, actually, because I don't necessarily know. I want to know what have you tried, what did work, what didn't work. Let's think about this. What do you think about this? Obviously, if age appropriate, we'd want the young person to be in the conversation as well. Yep. And family. So it's very much a team approach to what works. So, you know, for some people, like a one-to-one is really, really important. and for other people that's a nightmare because it marks them out. It's different and it's like, I don't want this person following me. For other people, it's a halfway house.

14:03It's like, I know I've got a person, but I don't want them shadowing me. I just want them on hand. Or things like visual timetables, for example. One person's hell, another person's heaven. This is what's so wonderful but also difficult, right? Because it is very individual and that's amazing because that's absolutely how it should be and how it is. But at the same time, it's difficult to then kind of give generalizations or, hey, look, if these three things work for autistic people, well, they might work for some, but not everyone. So it's asking the questions. So when you have that base knowledge, then you know what questions to ask.

14:44So, for example, routine, structure, predictability. So you ask people, you know, do you like that? Do you have that in your life? is all your parents you know does your child respond well to this or not and so it's about tailoring things for people what do you see mental health wise and autism like gender differences what do you see there in terms of mental health for autistic people so i think obviously our awareness of the differences really came to the fore about sort of 10 years ago i'd say there's a lot of research and back then we really rest we're beginning to recognize that we'd under recognised autism in females but I think what we've also now recognised is that we've also under recognised autism in males who might not present in the traditional way so while I will talk about some differences I don't necessarily think those differences are as pronounced as we might think so but the kind of differences that have been really highlighted in research and certainly are a thing are things like girls might be more prone to masking but again I don't want to minimise the fact that boys can mask too.

15:49And girls might have more typical interests. But what does typical mean? So like, you know, I work with girls who are interested in physics and engineering, things like that. And I always have a bit of a like sort of yay moment on here. But one thing that I think probably is possibly still more pronounced is that girls may present later or they may get diagnosed later with autism. And then consequently, they may have more mental health conditions. Okay, that's a general observation. I think so, yeah. Yeah, that's interesting. Misdiagnosis and mental health for young people. What do you see there?

16:23So, for example, what was called challenging behaviour, now we tend to refer to as distressed behaviour. Sometimes that was medicalised previously, so it'd be like, okay, there's a lot of aggression here, we need to give some medication or something. And people weren't thinking about what's causing, what's underlying this distressed behaviour. So that's when anxiety could get missed. Again, I think now there's much more awareness. I think that's much less likely to happen. Sorry, that's interesting. Are you saying that aggression can be a presentation of anxiety? Oh, absolutely. Let's talk about that for a minute.

16:57So if we think about anybody who's a bit angry, think about what's underlying that. Often it's anxiety, actually. And not fear? Well, anxiety encompasses fear. So anxiety could encompass fear, stress, worry. They're kind of slightly different. Yes, they are like little different tunes, aren't they? So anxiety is a kind of umbrella term for fear is a very physiological response. It tends to be very here and now. And that's when you might see anger. So we all have emotions and then it's the response to the emotion, which is the regulation bit, as it were. Yes. And then if you're feeling intense fear suddenly, and fear can be for different reasons.

17:37So it might not just be, oh, there's this lorry hurtling towards me. It might be there's a fear, a threat to my self-esteem. Somebody's saying something and it's making me feel really upset. That might be fear. And then that might result in hitting out or hitting in, which would be self-harm. What's interesting is you're saying somebody might say, oh, this child's being very aggressive. Yes. And they might, in some cases, be put on medication to stop that aggression. Whereas you're saying, hold on, this could actually be anxiety. Yes, absolutely. And not only is it anxiety, but then you might think, okay, it's anxiety, let's treat the anxiety, take it a step back even further.

18:15What's causing the anxiety? So is it something in the environment that we need to shift first? So you're kind of like in terms of treatment, your three approaches would be environment, therapy maybe, and then medication. so we would be hoping that medication would be the last line of treatment not always and there might be good reasons to start with medication which we can discuss but equally you know what we really want to be looking at is not just therapy either because as I said mentioned earlier I can't just throw up somebody back into school for example yeah I can't just throw up somebody to not have sensory responses to their environment for example and so we would be very much thinking about the environment first but it's not always the first thing that's thought about okay yeah What's your advice for regulating anxiety for young people?

19:06Okay, so if we think about how anxiety presents and what are some of the pathways. So one of the things, again, that garnered a lot of research interest in the past 15 years or so was how anxiety might present slightly differently in autism and reasons for that. So one thing we know is that anxiety presents in very typical ways as well that you might see in anybody. So like your sort of somatic changes, avoidance, reassurance seeking, all those sorts of things. But there's also some differences. So, for example, communicating your anxiety via distressed behavior. So like aggression or self-harm, etc.

19:40Or losing interest in activities or just becoming more avoidant or things like that. So we really have to, first of all, do like what we call functional assessment. So what is the function? What's this person communicating? And often at the heart of that might be anxiety. So that's one of the differences that people might not be able to use language to tell us that they're feeling anxious. Yes. The other thing that a lot of research has focused on is kind of the pathway. So what might be features which might be aligned with autism, not necessarily present in every autistic person, but things which are important to consider.

20:13So, for example, like that sort of attention to detail focus. And why might that cause anxiety? For example, if you're not taking into account the wider context and you're focusing on a detail, you might misinterpret people, what they're saying or their intentions, like if you actually find people confusing, etc. So social anxiety, for example, it can be quite a big challenge for many autistic people. Yes. But it might have different pathways. So typically social anxiety might be driven by a fear of doing something stupid or saying something or people think I'm an idiot or something. but for autistic people it might be i won't know what to say or people ask me questions i don't know how to respond yeah and then that might link to separation anxiety like in children like i know that i find social situations really difficult so i'm going to keep my parent really close to me that's one thing alexithymia yes i think it's something that you've talked about not a lot we haven't talked about it let's let's talk about that a bit yeah so alexithymia is the difficulty recognizing labeling feelings kind of measuring feelings they're like how much am i feeling of something and i think in autistic people probably at least 50 percent of them has been shown in research anyway maybe more would have alexithymia i remember sitting in rehab at 21 in arizona i mean my concept of feelings growing up was fine good that was it and you had to sit in a big circle where I think it was a couple of English people and everyone else was Americans sit in this circle and everyone was handed a sheet and on the sheet had a list of words and the list of words were feelings and you had to go around and you had to say the three feelings that you were feeling I mean oh I have never felt more like a fish out of water of like Firstly, I'm in rehab.

22:02Secondly, I'm in America, which I've not been to before. Thirdly, I'm in the desert. Fourthly, there's a f***ing sheet with a list of feelings on them and I'm meant to just pick. And I don't understand. I'm dreadful at naming feelings. So yeah, lexothymia is, I didn't know it was up sort of 50 %-ish. That's quite high on autistic people. It is quite high. Can you learn it though? So possibly. You might learn it through unconventional means. Okay. So, for example, one of the adjustments that we make in therapy is often having longer, early period sort of thinking about emotion recognition within yourself, maybe even in other people as well.

22:38How do you know what other people think? Yeah. So you might learn it through a sort of intellectual pathway, which is like, I know when my stomach does this, I'm either feeling that or that. Yes. Or it might just be, OK, I've got all these feelings. I just never knew how to label them. So it can be a real combination. Something I do in therapy is there's a few olexithymia questionnaires. OK. I tend to ask people to fill that in if it's indicated. But I do it therapeutically rather than as a, this is my outcome measure sort of thing. Okay. Because actually often people have a real light bulb moment when they're filling it in.

23:10It's like, oh, yeah, this has always been a bit of a challenge. Yeah. So the questions will be things like, you know, I feel confusion in my internal feelings, but things like that. And then that gives us a talking point as well in therapy, which is like... Because there's a language of feelings, right? There is a, like, there's a language. And it is, I don't know, to me anyway, it feels like a foreign language. Yes. If a car's coming towards me, that means I feel scared. Because that's what happens for most people when a car comes, you know, very logical response to it. Having three daughters, I didn't grow up talking about feelings.

23:50And I don't want that to be the same. but I just have to make a real conscious effort, try and describe what I'm feeling or try and ask how they feel or what they're feeling. Almost like sort of forced so that we can develop a, like it's okay to talk about feelings basically because I didn't grow up in an education system or in a family system where he talks about feelings and I don't want a repeat of that. And I guess it's then compounded by being autistic if you're saying that alexithymia and autism and feelings don't often always go hand in hand as like natural bedfellows. How else can autistics help understand how they feel?

24:35I mean, I think that what you say about modelling is so important. And it's also modelling not okay emotions as well as okay good regulation, as it were. So, you know, we all have bad reactions sometimes or wish we'd dealt with things differently or whatever. But it's okay to model that to children. obviously so when you're asking about what can people do to help i mean i think that increasing that language but equally you know helping children to grow up in an environment where it's okay to have emotions and actually having some language around that can be really helpful so equally for some people they might not want to spend all day every day thinking about emotions so we do have to strike a bit of a balance but i think it's like having a sort of a number of skills that are available to you yeah so sometimes people will say like use your words for shorthand And that may work for some people, it may not work for other people.

25:24Yeah. That may be code for what are you feeling? Yeah. Or sometimes they might have something on the fridge, like sort of like the five point incredible scale or something like that, which is sort of a range of faces, affecting emotions. And it might just be, you know, young people can be supported in terms of just showing what you're feeling right now. Colours is, I guess, the other one, isn't it? Yeah. That I see in kind of kids' books. Yeah. Yeah, I've noticed there is a book series and it's basically stories of feelings. I think there's also a Disney or a Pixar film that characterizes feelings.

25:57Inside out? Yeah, that's the one. And I love those because they're just different portrayals that connect with people in different ways. Yeah. To understand what these mythical, invisible, at times, confusing things are, are called feelings. Yeah. Let's talk about another massive, ridiculous myth, which is autistic people are not empathetic. Yeah. Yeah, what's been your experience of autistic people over the last 30 years in empathy? Yeah, I think we've massively busted that myth, definitely. We know that autistic people may demonstrate empathy differently or communicate it differently or feel it differently.

26:34Okay. And I think autistic people, just like any other people, there may be people who don't actually feel empathy. I certainly have met people who said, I just don't understand why people cry in films or things like that. That may not be a lack of empathy, but it may be a lack of understanding of why does that stimulus create that emotion and that behavior? Yes. Crying or something. But yeah, the myth about autistic people not being empathic has certainly been busted. In fact, if anything, the other way around for some people. Yeah. Like really being very sensitive to other people's feelings.

27:04And sometimes what we'll be doing in therapy is actually trying to have some separation. Okay. You know, it's like, how can you be a bit boundaried? Yeah. How can you feel empathy towards your friend, for example, but not take on that emotion to the point where you're actually now feeling huge distress? Yeah. And I think boundaries and vulnerability for autistic people is definitely a theme that keeps coming up. And in terms of like, I say, protecting mental health, I can see how personally in my own life and the people that we hear from having good boundaries, being around good people, not getting lost on social media and we have a teenage daughter constantly trying to put myself in young people's shoes where this is not the time where I grew up it's it's such a different time and it it feels so hard for them what amazes you about the young people that you've worked with oh my word how informed they are yeah I mean I have worked with some young people who are aware of things aged sort of 12 or even younger just in terms of the world like concepts like justice and things like that I think that's one of the reasons why I really enjoy working with autistic young people as well is that really strong sense of justice and also desire for change as well yes activism and things like that yes so that's that's great and you know when I think about also what's changed in the world of autism and generally neurodivergence is that obviously we focus much less on deficit now and much more on kind of strengths and also how features can be a real challenge in certain contexts but actually a real strength and a real asset in other contexts.

28:47So for example you asked me how does anxiety present one of the pathways that's been investigated in research that I've been really interested in is cognitive flexibility. So and you might think that you know inflexibility that's a bad thing you know we have to try and make people more flexible etc it's not necessarily a bad thing you know if you think in terms of history for example like various figures here everyone thought was completely insane they would know i know i'm right and guess what the world is around you know things like that so actually we need people who are really focused bloody minded yeah yeah sometimes yeah so but having said that when it comes to anxiety it can be helpful to be able to see things through differently and that's when therapy can be helpful so there's been a lot of discussion about is cbt harmful for autistic people cognitive behavior therapy yeah yeah yeah and i can actually see why it might be actually i've not heard of that so why right so i think if delivered badly then it can absolutely be harmful because one of the criticisms has been it's not neuroaffirmative it's trying to make people fit into a neurotypical world okay because it's a it's in informing on a style of thinking and being.

29:57Exactly. So bad CBT would be there's something wrong with your thinking. That's why you're experiencing distress. So we're going to help you change that. Change your thinking and you'll be all right. Yeah, exactly. Oh, OK. But that's not good CBT anyway. So good CBT is about guided discovery and helping people come to their own solutions and observations. And then there's what we call third wave therapies as well, which is an extension of CBT. But in terms of neurodiversity informed CBT, That's where the main adaptation is bringing that knowledge of neurodivergence. Because if somebody has what might look like what we call unhelpful thoughts or dysfunctional belief or something like that, there might be very good reasons.

30:39It might not be dysfunctional at all. And actually understanding that from the neurodivergent point of view. And again, everybody's different. So you can't just do a bit of training and think, right, I know about autism now. But it's knowing the questions to ask. It's hearing what people give you. and also when I'm doing therapy with people it may not be till session four or five that I've a formed enough of a relationship for them to trust me yes and what we do in therapy is something called a formulation so typically you might do that by the end of session one or two that's when you kind of got most information you pull it together in a visual kind of representation I suppose but with autism I would probably not be doing that till about session five or six why not Because maybe I haven't formed a relationship enough yet for them to trust me enough to be able to, for them to think, okay, they know this person knows me.

31:28It might be because we are working on kind of emotion, recognition, things like that. We're not even going near sort of the lead up to the problem or anything like that. And it might also be that for somebody to trust me, to give me all the information that you would need for formulation, it takes time. And one of the kind of more practical adaptations is incorporating people's focused interests in therapy. Yeah. And I've learned so much about some really interesting subjects. Tell me about what special interests there are because we've had it so narrow. You know, we've had the stereotypical trains and planes.

32:04Give me some examples of what you've heard. Yeah, I've met actually young people for whom psychology was a special interest and religious iconography was interesting and some really fat Egyptology. And I've learned a lot. I can't remember what conversation I was having the other day. But I remember thinking to myself, I could talk about this all day and I had to really stop myself. It was so interesting. So, A, you know, as a human, you learn a lot and it's just generally interesting. B, but it's for relationship building, it's really important. Love that. And also, not just because you're kind of faking interest in something or whatever, but the number of, mostly I generally am genuinely interested.

32:43But also, sometimes it's somebody's way of checking out you as a therapist. It's like, does this person get me? are they going to give me the time of day? Are they going to let me even talk about it? Exactly, yeah. Yeah, that's interesting. Can I trust them not to get bored, not to shut me out, not to fake it? I'm assuming this. Do people have to sit opposite you when you do therapy with autistic people? They can sit wherever they want. Yeah. They can have their feet in the air. I always kind of give an internal yay when people come in and just take their shoes off because that means they're comfortable enough to do so.

33:16They can sit however they want. I mean, that's another important adaptation is that sometimes people might think they have to make eye contact. I might say to somebody, don't feel you have to. It's fine. You can look wherever you want. Okay. And let's talk about masking as it relates to, obviously to autism, but also to mental health. Absolutely. I've not heard about masking in mental health. And I feel like I've done that. I'm fine. I've said I'm okay. I'm good. on the outside it might look like everything's great but actually inside absolute turmoil what do you see in that kind of triangulation between autism mental health and masking it's massive it's it's been shown in research to be but intuitively as well it's massive so if we think about what masking is and there's different types of camouflaging is another term that's used so masking maybe being like covering up autistic features yeah like not stimming or something like that or maybe like observing what you think is neurotypical behavior and then trying to copy that so like for example like i speak another language but not very well french and i might observe other french people to see their mannerisms you know maybe try and crack a joke in french or something it might go horribly wrong or whatever but because i don't speak it very well it's like it's effortful so and then if we think about masking you know we will all mask at some point in our lives but if you think about the fact that if for autistic people you might be doing all day every day yeah and that's another thing i think has changed an awareness of masking in schools so that child who's sort of a bit frozen or well behaved you know it doesn't mean they're not having a huge internal turmoil yeah so the impact of masking is many so one is just the sheer stress of having to be a certain way the other is that people might think the world only accepts me when i'm masking So I have to do this.

35:04It kind of leads to a whole other bunch of like shoulds, as it were. I should be doing this. I must be doing that. And then another one is then identity issues. So like, who is the real me? I've been masking all my life. I don't actually know. So actually, that's a big important part of what many of us do in therapy, which is identity work. So that's not necessarily something that you would do in like a sort of formal CBT package. I mean, some people might. There are some quite nice workbooks out there sort of for helping young people to learn about their diagnosis. But identity work is actually really about just weaving in through therapy.

35:38Like, who are you as a person? What works for you? In what context did that not work for you? But in what context might that work for you? So if we take an obvious example, stimming, I got teased, I got relentlessly bullied, so I learned not to do it. Okay, but do you like doing it? I love it. It makes me feel good. It helps me regulate. Okay, so then let's think about why, what function is it serving for you? And then let's think about how you can do it. Where would you do it? Where would you feel comfortable doing it? Would you want to educate other people around you or do you want to keep it to yourself?

36:07Yes. That sort of thing. Because stimming ultimately is emotional regulation, right? I mean, it's a regulation technique. Or it's just nice. Yeah, it's just nice. It's a nice thing to do. What concerns you for young autistic people? I think I've talked about school quite a lot, but I can't really stop talking about it. That is one of the things that concerns me. But one of the other things that concerns me is there is still some stigma and discrimination. And I would love to live in a world where there was no judgment, where people could just be, as it were. But it does concern me if people aren't comfortable sharing a diagnosis, for example.

36:47I think it's completely up to them. That's their choice. But if it's because they feel they won't be accepted or because they've been teased or bullied or because they fear they might be teased or bullied, that would be concerning. There is something else, I suppose, about access to mental health support as well for young people. I think waiting lists are insane. I haven't shown any improvement, if not getting much worse. Are they bad for mental health as well? Yeah. Are they? Yes. and so accessing support but accessing the right support so support from services who've had training yes you're very neuro affirmative etc yeah that can still be really really challenging what do you mean by neuro affirmative so it means different things i think to different people but i think it means accepting every young person for who they are for whatever they bring whatever they present and allowing people to be who they want to be and so you have differences which are supported effectively slash celebrated and for people's strengths to be allowed to shine rather than kind of you will fit into this sort of box kind of thing.

37:50Yes, your normative ideologies. Let's just go back to school because whilst you might think you've sort of talked about it a lot, I don't think we can talk about it enough. I come from a belief that everybody wants to do the right thing where education is concerned. Yes. and that no one's trying to do things badly and be mean and not get it right. Can you give me some hopeful stories and examples of where you have liaised with schools and it has made a difference and they get it and they want it to change? Yes, lots. And it also really depends on the young person. So there have been people who I thought mainstream is not going to work at all, and they've gone and it has.

38:35and for some people having that big pool of people that's where they're going to find those like-minded people. Yes, there's more chances of that happening. Exactly, yeah. Or they can kind of just blend into the background or they might find some teacher or some subject or something where they really shine. So for other people a big mainstream school is definitely not the right place. They might not necessarily need a specialist placement but a small nurturing school is what's right for them. Some people like a type of foresty type of school. Or for some people, a much more structured type of school.

39:09So one thing I've always worked with is trust in parents. So when I've had parents who have found a school for their child, it's like, can I, you know, will you help us with tribunals or letters or whatever? I never question that judgment because they're always right. And I think parents know when they walk into a place what's going to work for their young person. But even if a placement is currently not working, there may be small adjustments that do make it work. So like the uniform one I've mentioned already. Yes. Having a go-to person or a go-to place is really, really, it's one of our kind of most standard recommendations.

39:39And not everybody needs that place, but just knowing that they've got that place is really important. You mean a physical place to go to? Yeah, like a space. A safe space at school? Yeah, exactly. And lots of schools have them there. It might be like a sensory room or something, but it might also just be a place with beanbags kind of thing. Yeah, or a bench or a tree or somewhere. Yeah. Well, that's a good point, because it might not be what you think it is. Yeah. But it's actually asking the young person, where do you feel good? Yeah. That's a good point. Going to a room that's, I mean, this is just me, but I think as part of a bit of PDA coming in as well of like, no, no, no, you're not going to tell me I have to go to that room if I'm not feeling okay.

40:17Yes. I don't want to go to that room. I just want to go outside. You know, like, no, don't tell me where I'm meant to go. I think that's a really good point. And exactly that. And you might have identified a go-to person, but the young person might not get along with them. So exactly, you have to kind of, you know, try and test and that sort of thing. And then another thing that's often kind of mooted is having a reduced timetable, which we have to employ with extreme caution because a reduced timetable should not mean reduced education. However, for some young people, dropping a subject or having a gap in the timetable is what they need to kind of regroup.

40:51You know, just that little break can be really, really important. Or some are separate to, definitely separate to do exams or separate to eat lunch or separate place to get changed for PE. Yeah, that's been a big one for my daughter, separate place to get changed for swimming. Yeah, she refused to go swimming. Right. And that can stop somebody going to school on that day when they're swimming. Oh, it really would if we let it and we haven't let it. So we've spoken to the school and they've changed and that's been really good and a game changer. What do you think are the simple things that schools can change?

41:26it's not about costing lots of money it's not about needing to be experts it's those simple universal design wins that really make a big difference to young people yeah detentions do I need to say any more? so having some flexibility about the application we still have detentions yes not having your top button done up or not turning in homework so that's a real bugbear for me because if somebody's not turning in homework there might be a very good reason. So they might not have processed the instructions. They might have unrecognized literacy difficulties, etc. Executive function difficulties like organizing themselves.

42:06So what a school might see as not turned in homework might have been three hours of meltdowns at home the night before. Or extreme anxiety and knowing I haven't done my homework. I did not want to do my homework. I just didn't know what to do and now I'm too scared to go to school. Do you see burnout in autistic young people? Of course, yeah. I sort of feel like we only think about burnout in like a work adult context. Oh no, definitely in young people. I think before it even had a name. So those young people who are out of school, for example, for a year, two years, maybe even longer. Some of those would be in what we might now term as burnout.

42:39What did we call it before? Nothing really. I think we just called it out of school or a mental health episode or something. But in terms of young people, for example, who are out of school, absolutely I would think of that as a burnout. So it may be that they reached a crisis point, just complete overwhelm at school. So if you think about what is school, academic demands, social demands, navigating that social milieu. So we know that obviously the transfer to secondary is often a real sort of crunch point for a lot of autistic young people. That might be as well when a lot of people start being referred for diagnosis because kind of the wheels come off.

43:12So if somebody was in a nice small primary school, well supported, but, you know, still autistic. but it's when they get to secondary school that challenges become much more apparent. And then, obviously, if not appropriately supported, or even sometimes as the best way in the world, it's just not the right environment for that young person. It just all becomes too much. And that's when day-to-day anxiety can tip over into shutdown or burnout, complete burnout. Yeah. I really want to actually take this opportunity and your experience and dive into a topic we definitely touched on. I've definitely talked about my own experiences of, but meltdowns and shutdowns.

43:50Where should we start? What is a meltdown? I would describe a meltdown as a moment of overwhelm when people might be experiencing extreme emotions and they might be expressing that either by externalizing. So I don't know, some sort of physical response or shouting or something like that. Or it might be internalizing. So it might be extreme emotions, extreme distress. but somebody might be like shouting on the inside or self-harming or something like that. And they are a moment. So I would probably think of them as, when I say a moment, they can go on for a long time. Yes. But yeah, I would think of it as a particular moment in time, as it were.

44:28Yeah. Is there a build-up to a meltdown? Almost always, I think. It might feel like it comes out the blue. It might appear to other people, but there will definitely be pathways and reasons. and if people look hard enough, preventable reasons often. Can adults have meltdowns? Of course. Have you ever been to IKEA? I mean, I'm asking you these seemingly stupid questions because I think, to generalise, we have the kind of tantrum idea and a child in mind of the naughty little boy who's having a screaming fit. Are meltdowns tantrums? I mean, I would think of them as quite different. Again, even our understanding of tantrum is changing, I think.

45:10when you think about demand avoidance. So I would usually think of a tantrum as in response to I'm not getting my own way or something kind of more traditional sort of parenting language. Whereas a meltdown, certainly we would very much see as an expression of distress and not something for which you would just put them on the naughty step or something like that. Yeah. And what's going on emotionally in a meltdown? Oh my gosh. I mean, it could be all sorts of things. It could be anything, usually extreme anxiety in response to something. It could be anger, but as we discussed, anger is often driven by anxiety.

45:44Anxiety about some sort of threat in some way. And that doesn't necessarily mean a threat to your body or person, but it means a threat to your self-esteem or a threat to what you thought to be the way things are. And it's like, what do you mean that that's not going to be the way it is? So, for example, change. Yes. So when we think about how anxiety has got maybe different pathways in autism, one of those kind of really key drivers is a change. So changing routine or changing the environment or something like that. And why is that? It can be because it's threatening. It's like that's not the way that I was kind of expecting things.

46:18I didn't have a script for how to manage this change, you know, that sort of thing. What advice do you give to parents in helping young people with meltdowns? I mean, we talk quite a lot about lexothymia, so about emotional literacy. So actually in calm moments, obviously not in the middle of a meltdown, equipping people with their kind of understanding language to be able to recognize their own feelings, communicate those feelings. So sometimes the first kind of stage to be able to manage emotions, regulate, is to be able to walk away. So it's not that you can calm yourself down or effectively do some amazing problem solving or something, but it's just that you know that you're going to lose control so you can walk away.

46:58So that's something. So again, it's about teaching young people language, teaching them strategies, which may or may not work. So for some young people jumping up and down doing some physical exercise change in temperature something like that for parents it might be about really rolling back on communication and something is called co-regulation which is a nice term for something parents have been doing since parents existed but feeling the same feelings as the your child and winding down together as it were okay so sometimes if you have someone opposite you who's feeling a feeling your instinct might be like to go no no no don't do that something whatever whatever it might do it might heighten the situation yes the co-regulation is almost like recognizing this is really stressful for whatever reason my child being upset is upsetting me and i'm going to work on myself and i'm going to help my child co-regulate with me somehow so that might be things like speaking more quietly not speaking at all sometimes parents say they hung or they rock depending on whether a child wants to be touched at that moment.

47:59So parents will know whether touch works or not. So it could be all sorts of different things, but whatever it is, it's actually being very aware of your own emotions as well. So shouting at somebody who's dysregulated and saying, calm down, is obviously not going to work. But then it's recognizing, doing almost like the opposite action. And so then what's a shutdown? So I think a shutdown I would see as a kind of emotionally overwhelmed moment when people might lose powers, as it were, of communication. They might lose the ability to function. So people talk about loss of skills. It might be ranging from not being able to go to work, not being able to go to school, to just not being able to leave a room, actually.

48:42And I would think of not just a moment in time, but that might be something that's actually quite a long period. It's a period of recovery almost. But sometimes particularly at beginning of those sorts of periods so i mentioned i've worked with young people who are out of school and usually the conversation's like how are we going to get them back to school it's like no the conversation needs to be about how we're going to help them get to recovery first of all yeah so sometimes it's just pressure off all pressure off why do autistic people shut down so a very good question maybe a plethora of reasons and it's going to be different for everybody but i think the pressures are fitting into a neurotypical world the pressures they're just a social world full stop.

49:20So when people don't behave in the way you expect them to, or they're unpredictable, or you get bullied, and you cope and you cope and you cope, and then suddenly you're just not coping anymore. Are there any patterns in terms of what's happening beforehand? Bullying often precedes a shutdown in terms of children and adolescents, I would say. Okay, that's interesting. And sometimes it's just a buildup of the overwhelm of having to turn in work and having to keep up and having to turn up and as I mentioned like kind of having a difficult morning it kind of if that's every morning there comes a point where actually it's just not doable anymore and therefore do you hear a difference school holidays versus school time in terms of meltdowns and shutdowns definitely yeah sometimes it's day and night yeah so not the way you might expect for everybody so for some people that loss of routine of school causes much much more difficulty challenge for parents in the holidays.

50:19But typically what I would hear is anxiety just might melt away or at least lessens significantly. And then there's a build-up, like, for example, that weekends, Sunday morning it might start up again or at the end of the holidays, the last few days, what have you. So, yeah, it's very typical. And what signs should parents, teachers, what signals should we be looking for? Well, the beginnings of school avoidance, which we now call emotionally based school avoidance, which is great because that recognizes the emotional aspect. It's not school refusal anymore. So that's an obvious thing. And then also just going to the sick room often, if that's what it's called or safe space or what have you.

51:01More and more, if that's kind of increasing or asking parents, actually. So the home based observations. So there may not be any obvious signs at school or they might be really subtle signs. So sometimes when we go on school visits, the signs are so subtle. It might be someone who's just still like a statue or signs that parents notice sometimes that other people wouldn't like a flush on the neck or something like that. That can signify real anxiety. So masking all of that can also precede a shutdown. So it's so good that we're having so many conversations now about masking and camouflaging. Yeah, I hear from a lot of parents where children are having a meltdown after school, not at school.

51:41are like get in the car meltdown. And then the school, not every school, but it seems still lots of schools are like, but they're absolutely fine at school. It's a parenting issue or there's a home-based problem. Yeah, what's the problem? How can teachers best support children at school so that they can have a meltdown at school? I know it sounds like a strange thing to say, but... Yeah, I mean, obviously we'd like to be preventing meltdowns if it's possible. But if people do have a meltdown, there are certain things. I mean, one of the most common things that causes anxiety for the young people that I've worked with is shouty, shouty behaviour.

52:26And that might not be being shouted at. It might be teachers shouting at the class or not even shouting, but it's perceived as shouting. So for teachers to be aware that that particular person might be really, really sensitive to raised volume or perceived, you know, being told off or something like that. Yes. So I think for a lot of autistic young people process that as is, if that's happened to that person, it might happen to me, even though they're the last person ever to get told off or something. Yes. So I've worked with so many young people who are terrified of detentions or punishment or whatever, even though they're never going to get one.

52:57so sometimes an explicit conversation like we're not going to give you a detention that can make a massive difference yeah and maybe sometimes or teacher like kind of being aware if there's a moment when they're in a human they shouted to talk about it with the young people and say you know that wasn't at you that was just yes nothing to do dinner whatever where does demand avoidance come into meltdowns? Ah, yes. That's a very good question. So as you probably know, anxiety is considered to be at the core of demand avoidance. And again, it's a bit of a threat. So it's a threat. It's a loss of control.

53:33So you're telling me what to do. What do you mean? I can't. I've got my own ideas of what to do. And I think a lot of people will see that as naughty. You've just got to tell them how it's going to be. But as many parents will say to you, good luck with that. Because I've been trying that since they were two. Exactly. And it's just not quite happening. yes so it's a different set of strategies and this is where things can get a bit confusing so often with autistic young people there's kind of like a view that you need structure you need visual timetables for a demand avoidant young person a visual timetable is demand so that might be scrunched up and thrown on the floor kind of thing so sometimes parents if they know that their child does respond to routine they might be behind the scenes employing routines but in a subtle way not in a very overt way yes whereas for other young people of course that routine is perfect.

54:20Velcro timetables, just pulling it all off. It really depends. Where does demand avoidance come into a meltdown? So if we don't present demands in the right way for that young person, so I mean, you probably know most of the common sort of strategies, avoid the word no, yes, but later, you know, that sort of thing. Or, I mean, that's just one example. There's something central that people talk about declarative language, which is like phrasing demands in a way which is not a demand as it were okay can you give us some tips on that tips might be things like oh it'd be so helpful if you could do that for me because i'm just oh you know what i'm backsterting but not in such an obvious way but it's kind of like you're helping rather than being told what to do yes so the other thing with demand avoidance is often young people have got very low self-esteem i've never met anyone who didn't and that's related to meltdowns as well actually because often afterwards that can be followed by a period of shame yeah other people aren't doing that why am i different why can't i cope that might not even be vocalized in that way internally or externally but there might be just this feeling uncomfortable feeling and so in terms of how that might fit into a meltdown then demand avoidance would be well you're threatening my self sense of self-esteem or something and i'm going to exert some control or power in the only way that i know or the only way that my body's telling me right now i'm dysregulated my amygdala not quite communicating with the bit of my brain, which actually helps me make sense of the world.

55:44So I've just got this overwhelm of emotion. And in terms of if that's happening at school, another, and again, this isn't always possible, but I've had young people who've kind of said there was a whole massive crowd of people around me or even try physical restraint, et cetera. Schools will all have their own policy, but I think those policies need to be neurodiversity informed as well. Yeah. Jumping back to shutdowns, how best can we help someone in a shutdown? I think, as I mentioned, the number one thing would be pressure off. And sometimes parents might need support with that because they might have their own sort of, I should be doing this, I must be doing that.

56:20And actually, you know, a lot of the conversations we'll have is about it's okay to take the pressure off. It's okay not to be rushing back to school. And I mean, it's not me that makes that decision. But if a parent is feeling pressured, it's adding to their stress, as it were, because there's a pressure to get back to school. And it's something about having conversations around that. So reducing pressure is absolutely one of the number one things. And then another thing is thinking about perfectionism. That's a common cause as well of shutdown and overwhelm, which is putting extreme pressure on yourself to be a certain way, to do tasks in a certain way, perform a certain way socially.

56:57So for example, we talked about masking, that pressure to be the funny one or the clever one, or I have to find something interesting today every day, do I? That sort of thing. So thinking about helping people to reduce their expectations of themselves, that can be very challenging, very, very difficult. And also sort of other aspects might be things like a fear of failure. So therapeutically, when someone's ready, that might be something that we might start working with. So for some people, if they fear that they're going to fail at something, they won't approach it at all. And so it's helping people to kind of build resilience again, and thinking, you know, it's okay to fail at things.

57:34Sometimes it won't happen. But fear of failure in its extremist form might result in shutdown. How much do we actually know about shutdowns, Anne? Well, as I say, the word didn't even exist until recently. Really? Yeah, but I'm seeing more and more research coming out now. A lot of it is qualitative, so actually asking people, what's your experience, you know, what words would you use? And I think that one of the main themes is it's different for everyone. So prior to being diagnosed, I can see how throughout my life I've had lots of meltdowns and they've taken the form of self-harm, addiction, those two, probably the key ones.

58:13If I look back and think about shutdowns, I can see how I could withdraw. I could see how I could kind of go, actually, I've had enough of the sort of outside world. But the shutdowns I've had since I've been diagnosed that I can see are shutdowns. I mean, when you talk about like powering down the computer, that is literally how it kind of feels. And I cannot, I just can't talk. I cannot tell my wife. And so I find them, shutdowns, incredibly confusing and complex because of that. And so I feel like I have a better understanding of meltdowns, feels a little bit more quote unquote obvious. shutdowns feel so much more mysterious very individual quiet in some ways less dramatic or less bombastic i want us to know more about shutdowns basically i want to avoid me and anybody going into a shutdown and how do we help people out of a shutdown like i know we talked about sort of low demands yeah and not kind of quote-unquote making it worse but how can we support someone through and afterwards yeah i mean it's going to be very very different for different people therapy and or medication might help some people might be necessary but equally it depends very much what took them to that place in the first place so for example if it was bullying or something if that's left them with trauma or kind of beliefs about themselves it's about having experiences which turn those ideas on their head as it were so if you are thinking I'm a loser, I'm no good, my life's not going to amount to anything.

1:00:01It's those tiny, tiny steps towards the opposite experience, as it were. So like we talked about particular focused interests and I've worked with people who weren't leaving the house at all and then suddenly they might have read about something. It's like, I really want to go and see that. I really want to go and do that. So that motivation can help sometimes, not always. My understanding of shutdowns was that they could be hours, could be days. Are you saying there can be months or kind of really long episodes? I mean, depending on your definition of a shutdown, then yeah. So if you mean a complete sort of non-verbal, non-speaking kind of episode, you know, possibly, I mean, and then we can also talk about situational mutism and things like that.

1:00:44But in terms of shutdown as in withdrawing from society, voting with your feet, although some people might say it's not volitional, but it's basically demonstrating that I'm not coping right now then absolutely yeah that can be quite a long period so for some people it's sort of intervention as it were might be about kind of just really gradual introduction to walking to the end of the driveway and back you know that sort of thing so we're doing quoll research based on lived experience of autistic people and shutdowns and we haven't really had this shutdown word for very long kind of feels like we don't really know a lot about shutdowns yeah i think that's fair there might be people listening saying i'm just doing this amazing piece of research yeah yeah i mean as i say there is research out there definitely but in terms of whether or not it's quality qualitatively different i mean again i think the language has changed because you know the language around mental health is quite disorder focused it's quite siloed you've got this you've got this you've got this whereas a shutdown is much more of a sort of kind of umbrella term for a whole host of things that could be going on yeah yeah and and the relation to autism is where we have that kind of intersection between neurodevelopment, neurodiversity and mental health.

1:01:56And historically, the two things have only recently been really coming together. And how do you understand that from a psychologist perspective on, yeah, depression, anxiety, autism, my head goes to depression and anxiety being symptoms of autism? Oh, that's interesting. I think they can be coexisting conditions. And I think that the pathways to depression and anxiety might be different for autistic people or unique, I suppose, for each individual. They always are for each individual. But, you know, what we know about autism informs how we would understand and treat, for example, anxiety or depression in autism.

1:02:36But I would say, obviously, neurodevelopmental conditions would be considered present from birth, exactly. They might not be apparent from birth, but we would consider that. Whereas we don't think that, you know, people are necessarily, you might be genetically predisposed to have a mental health condition, absolutely. It doesn't mean you're inevitably going to have one and it's not necessarily going to be lifelong. And it's very much sort of confluence with the environment as well. Yes, there's some nature and nurture aspect to that. We've had Adrian James sit there, Anne, and he's director of mental health and neurodiversity for the NHS.

1:03:08and it's good that they're separate and together because like you say, there is a lot of crossover and there is a lot of connection. Yeah. And what I want to see less of is we can't treat that condition because you've got autism. Right. Is that happening? It has happened. Yeah, historically. So that kind of diagnostic overshadowing, we're not the right service, we don't do autism, you know, that sort of thing. Yes, but it's a mental health condition. So I do think it's happening less, but I have still come across people who have experienced that in their seat for help. Everything is so siloed.

1:03:37Yeah, yeah. Isn't it? Yeah, absolutely. So again, actually, you're going for an autism assessment. Oh, and then we'll put you for an ADHD assessment. Yeah. Do the two things together. So you do combined assessments? 100%, yeah. I always have, actually, in the service I worked in as well, when indicated. Sure. And when we're thinking about mental health as well, ideally I would like to see every autism assessment have at least one person with mental health expertise in the team. you wouldn't necessarily do a complete you know mental health assessment for absolutely everybody but just to be able to recognize and unpick what's going on here because some mental health conditions can also mimic I suppose autism in terms of people might make reduced eye contact they might be loss of interest because they're depressed etc so that's why you need a really good history to unpick everything yeah that makes sense and then the other thing to say about mental health and neurodiversity of course is that mental health is something that is causes distress you We would seek to ameliorate and help people, whereas, of course, neurodivergence, we're not seeking to change that.

1:04:41Yeah, I'm not sure that I could put depression in the same potential identity aspect as neurodiversity. No. So I suppose I'm not thinking of that as a strength, but thinking about someone's depressed. Whether they're autistic or not, we might be thinking about what are your strengths. Absolutely, we would. Yes. But I suppose with, you know, with neurodiversity, we're not, and I use neurodiversity, knowing what I mean, not just neurodivergence, but actually think about all brains, how they're all different. And thinking about that in itself is definitely not the thing that needs changing. Yeah.

1:05:13But it might be the thing that needs support in order to prevent or treat mental health conditions. What would you like to know that would help you do your work about meltdowns and shutdowns in case there is an epic PhD student out there, researcher, who's just thinking about this stuff now? Oh, that's an interesting question. Give us your shopping list. As you say, it's a negative experience working on that premise as opposed to a I'm taking time out sort of thing. And it would be about how can we make things not get to that extreme level that somebody cannot function anymore? That's just not right, is it?

1:05:54That would be my number one thing. And what would you like people to understand about meltdowns and shutdowns? That what might seem like a small thing that someone should be able to cope with can be a massive thing. So to listen. And if somebody can't advocate for themselves, to listen to the people who can. and to recognise that a meltdown or a shutdown is not a naughty behaviour or a stubborn behaviour or a I'm just being difficult behaviour. So Anne, if I give you a magic wand, what do you do with it? Every locality would have equity of access to mental health support, which is neurodiversity and trauma informed.

1:06:37Okay. Where are we at on that journey? Patchy, I think, but definitely going in the right direction. Okay. Needs more funding, obviously, as always. Yes. But yeah, definitely on the right direction, I think. I didn't give you a number of wishes, so you can use your magic wand again. Yeah, so the equal other one then is, of course, neurodiversity-informed educational practices. And I think you've had other speakers, haven't you, who've talked about that a lot. And again, it's great that there's conversations in organisations who are going into schools. Pins is such a good vehicle for it. Pins is like, just do more of that.

1:07:13Yeah, exactly. Yeah. Yeah. Thank you for all the work you've done and are going to keep doing. Yeah. And I know lots of challenges and education system is not perfect, etc. But I believe in young people and I guess I believe there's a bright future there. So do I. I agree. My last question. Oh, yes. We've given you one green dot badge. I have another one for you. they are our symbol of support for neurodiversity who would you like to give this second one to? I'm afraid it's not an individual but it's the people who have inspired me in my career I would like to give it to every parent who has done a two hour round trip journey twice a day because they found the right school for their child every parent who has been sat through some interest or club or something or the other twice a week because they found something that their child loved and thrived in every parent who has been the advocate at legal advisor teacher therapist and parent for their child all of those parents they're the people who have inspired me in my career and never fail to inspire me never get used to that if you know what i mean what i mean by used to it is it never becomes just routine it fills me with awe every time yeah so that's brilliant answer like yeah best answer thank you and thank you

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