All Things Autism - Dr. Carol Stott, Coping with Covid.mp3 ========================================= Speaker 2 00:01 - 00:13 Hello, this is Anna Kennedy. We're talking all things autism and we're live and we're in my house and I'm Skyping and we're not in the studio. I'm getting used to doing this now. So we're going to be talking to Dr. Carol Stott. Speaker 2 00:13 - 00:35 who has been a regular on Women's Radio Station. And before we go over to Carol, I just want to let you know what's been happening over the last week. So not been feeling very well at all, but thankfully I'm feeling a lot better today. I had awful headache, temperature, aching limbs, sore throat, just not sleeping very well at all. Speaker 2 00:36 - 01:15 Patrick wasn't well, and Angelo also had a temperature, but also suffering with teeth problems. and yeah we were all in the wars during the week so I'm starting to get back to my normal self thank goodness just not a pleasant thing to go through at all and yeah just just for people listening in just really look after yourself stay strong drink plenty just do whatever it is that you can do to keep well and obviously stick to the rules to what the government are saying stay at home just go out for one and walk a day or if you want to do running or whatever it is that you do. I've started doing my exercises again because I couldn't do any at all last week. Speaker 2 01:15 - 01:21 I just didn't have any energy whatsoever. So, Carol, welcome again. Thank you for coming along. Speaker 1 01:22 - 01:25 Thank you. Yeah, my pleasure. Skyping along. Yes, yes. Speaker 1 01:25 - 01:30 I'm also at home, obviously. Yeah, glad to hear you're feeling better as well, Hannah. Speaker 2 01:30 - 01:37 Oh, thank you so much. So, for people listening in that might have not heard you speak before, can we do a little bit of a background again, if you don't mind? Speaker 1 01:37 - 02:00 Yeah, of course. I'm a clinical psychologist and I work with people with autism and their families, mostly in diagnosis for my clinical work. and I also do a lot of training of other professionals on two particular measures for autism, so diagnostic training really for health and academic and other professions. Speaker 2 02:01 - 02:06 Okay, so with reference to your accent where are you from? Manchester. Manchester? Speaker 1 02:06 - 02:07 Yes. Speaker 2 02:07 - 02:09 So how long have you been living in Cambridge now? Speaker 1 02:09 - 02:22 Oh gosh, this time around since 1991. Prior to that I was here for about three or four years doing my PhD and then went back to Manchester and then came back. So yeah, long time now. Speaker 2 02:22 - 02:26 So what makes you want to live in Cambridge? What is it about Cambridge that attracts you to be there? Speaker 1 02:27 - 02:41 Well, I suppose once I've done my PhD, it was actually that I was employed by Cambridge University for 15 years or so. My partner was in Cambridge at that time, still is. So we settled here. Now we've got lots of friends here. Speaker 1 02:42 - 02:46 And yeah, it's a lovely place. It's really nice. It's really nice. Speaker 2 02:47 - 02:55 So how are you coping with all these rules and regs that we've got to try and stick to and you know being in and is it working for you? Speaker 1 02:55 - 03:24 It is, it is. I mean it's tough I guess like it is for many people. Fortunate in a sense I think that the kind of things that I like to do are things that lend themselves to being at home in a way. Gary my partner as well we do quite a lot of music together so we're doing bits and pieces of I can concentrate on my guitar lessons a bit more It's the feeling that we can't go out, even if we've not chosen to, the fact that you can't is Speaker 1 03:24 - 03:28 kind of a bit limiting. But yeah, we're okay, we're doing okay. Speaker 2 03:28 - 03:32 You're able to go for walks and things, you've got some nice walks. Speaker 1 03:32 - 03:53 Yeah, definitely. We live in a village between Cambridge and Newmarket and it's really very nice. It's called Lode and it's a very nice village with lots of walks around the National Trust property that's part of the village. very accessible, very flat so of course we've got our bikes out and we can cycle around as well so once a day for an hour is kind of what we're doing. Speaker 1 03:53 - 04:09 The weather's been good enough to do it as well and we're fortunate in having a garden that we can spend some time in as well so you know I feel for the people that are in more built-up areas I guess who are not as finding it as accessible really. Speaker 2 04:09 - 04:35 So what we're going to talk about today is you're going to talk about two books, but we're also going to be talking about lots of other things. So let's, let's touch on this particular book. So the first one is the little book of autism frequently asked questions and how to talk with your child about their diagnosis and other conversations. So it's by Margaret Ann Sugg, spelled S-U-G-G-S and published by Jessica Kingsley. Speaker 2 04:35 - 04:37 So why, why did you choose this book? Speaker 1 04:38 - 05:23 I think one of the things that struck me really is that what might have happened for some people going through the diagnostic process is that they've recently been diagnosed or their child has been diagnosed and are now in a situation where perhaps they feel that lots of things would have been happening that they're not getting access to at the minute. So it's generally I guess about those sorts of questions but with a particular slant to how people are coping right now with the current circumstances really. The same things apply in many ways you know it's not I think it's the kind of thing following the diagnosis of autism it's it's it's more of a marathon than a sprint and there's there's good things about that marathon as well but you know it's not that everything Speaker 1 05:23 - 05:53 would have happened in the last two weeks by any means two or three weeks but There are, I think, people who are wondering, gosh, what am I supposed to do? Would I be doing something now if this whole thing hadn't happened quite the way it has? what I wanted to do is just consider some of the questions, some of the things that the book points people to. I'll just, I'll read a couple of bits out at certain points maybe, but it's just to think about that whole notion, you know, what do I do right now, how is that changing things for me? Speaker 2 05:53 - 06:10 Okay, can I, so one of, obviously one of the things that it highlights is what is autism anyway, but can I ask you if some, because obviously people give different variations of what autism is, so if someone said to you what is autism? How would you personally describe it and then how does the book describe it? Speaker 1 06:12 - 07:00 Well in many ways I think about autism almost like a personality characteristic in some ways you know there are very characteristic things about autism that that many people are familiar with and I think it's a positive thing perhaps to think about it as a personality type in some ways that brings with it a lot of challenges and also brings with it a lot of strengths, a lot of really good things as well. What I say to people after a diagnostic assessment often is that if I'm giving someone a diagnosis it's often a very positive thing because what it quite often does is explain some things to people about why they may have been struggling a little bit in the past and why they may have been experiencing really quite good focused strengths and things. Speaker 1 07:00 - 07:21 And that really autism becomes a problem when the person with autism, the autistic person, finds that the society around them doesn't fit. So it's not a problem in itself, if you see what I mean, and that's kind of how I think about it. Personality type with strengths and some challenges, really. Speaker 2 07:22 - 07:40 OK, so for people listening in, I know you've explained this once before, but if you could just do it in short bursts of, if someone was looking to have a diagnosis, What would they do? Where would they go? And obviously with the current situation now, who do they contact? Speaker 1 07:40 - 08:08 Yeah, that's a very good question about the current situation. In general, let's look at that first. In general, I think the first point of call is your GP. To talk to school about it often is very helpful, but I think the first point of call to get the formal ball rolling really, in a sense, is the GP who will, for NHS services, direct the family towards whichever autism services are active in their area and that Speaker 1 08:08 - 08:49 just changes a little bit depending where you are. So in some parts of the country it's the Child and Adolescent Mental Health Service which is CAMHS and in other parts of the country it's the paediatric department, this is for children now, so whatever paediatric service or neurodevelopmental service there is and in some areas both will take referrals. but it's increasingly the case that it's either CAMHS or paediatrics and then for adults GP will put adults in touch with again whatever local services are taking autism referrals it's often the general psychiatric service which is a little bit of a it's not in sync really with with Speaker 1 08:49 - 09:03 some people's needs because people with autism aren't psychiatrically ill necessarily and it's a little bit more difficult with adults often because there isn't just a specific service necessarily. GP first I would say. Speaker 2 09:03 - 09:25 Yeah some GP's still do say to some adults that when I've been speaking to families it's like why do you want a diagnosis you've got this far type of thing or to the adult themselves who might be going for a diagnosis and it's not down to them to say why do you want a diagnosis. So they obviously try to put them off. So now with the current situation with Covid what's changed or if anything's changed? Speaker 1 09:25 - 10:03 I don't think anything has really I think What's going to happen is that whatever waiting lists have been in place and they're long, people will be reasonably familiar with that I guess. Waiting lists are by no means short. hopefully the current situation won't be as it is in quite so strict a way for very much longer who knows we don't really know but I would imagine that within the next weeks perhaps months there'll be a return to face-to-face assessments again and it will almost be like the waiting lists have stalled and have become a little bit longer So, the process in principle is the same. Speaker 1 10:03 - 10:30 You'd go to the GP, whatever your local practice is currently saying about non-urgent and non-emergency related services, follow that obviously. The diagnostic process itself I wouldn't consider to be an emergency, but of course people might have quite urgent needs relating to. their child's or adult's presentation, in which case absolutely seek the help that you ordinarily would. Take the advice of whatever that local service is saying about face-to-face appointments. Speaker 1 10:30 - 10:52 Lots of people in various services are doing things remotely, a bit like we are right now, so either by Skype or Zoom. There are a lot of clinical psychologists I know who are continuing to do therapeutic sessions by Skype and by by Zoom, NHS services a little bit, it varies depending where you are in the country really. Speaker 2 10:54 - 11:15 So another question that the book throws up where we're talking if you've just tuned in to how to talk with your child about their diagnosis and other conversations, so one of the things that it also throws up is should the parent tell their child about the diagnosis? Now that's something that I get asked as well is how old's the best age to tell the child, so what's your opinion and what does the book say? Speaker 1 11:16 - 12:09 Well I think it's a very personal thing really and it's very much like we say about autism when you've met one person with autism you've kind of met one person with autism really and I think the person to know best in many ways will be a parent but the guide I would go with is to say earlier is better than much later but take into account your child's age and ability to understand some of the things that you're saying so obviously what you would say perhaps to a six-year-old would be a little different to what you'd say to a nine-year-old what the book is saying is that by nine years old they would certainly be suggesting that you do discuss and tell the child perhaps a little bit younger depending on your own circumstances and your own preferences really The book is generally absolutely in favour though of letting people know, of telling the child. Speaker 2 12:10 - 12:24 And once you've told the child, the other thing is that I've been asked as well by parents, so when do we ask our child to tell their friends at school or relatives or, again for me I think that's down to the personal choice. Speaker 1 12:25 - 12:48 It is really, I think it is and what again what the book's saying here is that Generally speaking, what's interesting about how the book relates some of these issues is that it talks to people with autism about them. So it talks to a number of adults about when they were told. Some of them are saying that they didn't have a diagnosis until later life. Others of them are saying they were diagnosed quite early. Speaker 1 12:49 - 13:29 And the book is asking them about what their own experiences were. And it's almost without exception, both in the book and the author talking about her experience, that people with autism themselves say that they either wish they'd been told earlier, if they were told late, or they're glad that they were told earlier. There's very, very few, if any, that say, I wish I'd never known. So it's very clear and I think what people with autism are saying is that knowing, even at a relatively young age when perhaps it's not knowing many of the implications, but knowing becomes something that helps them deal with some of the challenges as well as use some of Speaker 1 13:29 - 13:34 the strengths. It's about understanding I think, preparedness you know. Speaker 2 13:34 - 13:39 So what would you say was the best way of going about telling them, obviously it depends on their age. Speaker 1 13:40 - 14:15 Yeah I think quite factually, I think one of the things that the book covers and it covers this both in terms of talking about diagnosis as a thing but also about times of anxiety and things which I think is a really useful way of saying it is for the parent, be like the air steward that you would like on the plane when the plane goes into bad weather or whatever. Yes. And what it's saying is, and I guess we all do this to an extent, if we're flying and you go into a little bit of turbulence and things are a bit rough, you look to the air stewards, don't you? Speaker 1 14:15 - 14:47 Look to the air hostesses and look at what they're doing. And if they look quite calm, collected, explain things to you factually, don't pretend that nothing's happening because that wouldn't be good either, but deal with it, get on with it, look positive. That's one of the things that the book really talks about in, first of all, talking to the child about their diagnosis, what it means realistically, what challenges it might bring, more about the shorter term for the very much younger child, I guess, but for longer term things for the older children. Speaker 2 14:48 - 15:10 And something else that the book throws up is what the parents should say to others. So, obviously, sometimes when you share this news with families, typical things I've heard parents saying is like, you know, extended family might say, oh, I don't know why you've gone for a diagnosis. Obviously, the more articulate and the more able they are, he's fine. You know, he said he'll grow out of it or she'll grow out of it or whatever. Speaker 2 15:10 - 15:15 So what tips would you give for parents? about telling other people. Speaker 1 15:17 - 16:18 I think to tell them, again in a similar way really, to tell people factually in terms of things that they would understand, don't assume that people will know. Because a lot of people I think whose child is diagnosed have perhaps been researching autism for a little while anyway, quite often the parents that I see are well-versed, they know their child better than anybody else and they've gone through something of a process pre-diagnosis. So they know and they've done the research, perhaps other people don't know and I think there are sometimes a lot of assumptions around for people whose experience is very much versed in things to do with autism that everybody understands they don't you know so explain just a little bit about what it might mean about some of the behaviors if there are people that know the family well then there'll be people who have perhaps experienced some of the behaviors that parents have found difficult to explain, it's an opportunity to explain some of that and to talk Speaker 1 16:18 - 17:00 in general. There's quite a good tip in the book as well about somebody called Adam Harris, I don't know if you know him Anna, I don't know him but he's somebody, he's an autistic guy, he is the CEO of something called As I Am and he's in Ireland and what he says is to get somebody like himself to go into school, to go to whatever social context the person is in and educate the people around the child about what autism is. So go to your local cub and scout group or go to the school or have somebody like this guy, Adam Harris, go to the school and explain to people, just a 15 minute session to the other school children about what autism is. Speaker 1 17:00 - 17:23 You don't need necessarily identify the child, but of course, but you might want to go into the school and to talk about what autism is, what it brings, focus on some strengths, explain maybe some difficulties. But it's very much, I think the theme of the book pretty much all the way through is about communicating, is about talking positively and realistically to others. Speaker 2 17:24 - 17:41 Okay, so one last thing for the book now, saying if the parent or child feeling sad and overwhelmed about the diagnosis which obviously can happen because it's a big thing for you to get your head around. What advice does the book give and what advice would you give? Speaker 1 17:42 - 18:13 Well they're both really quite similar I think you know what it says I totally agree with and again it's about giving time for yourself giving yourself some space. There are obvious difficulties around that right now, but in a sense, I think the advice doesn't vary that much from how it ordinarily would be given, is to be easy on yourself. research a little bit. Don't go delving into the internet about all things autism because you'll be completely overwhelmed and you know it's just not that helpful. Speaker 1 18:13 - 18:45 Look for the sources that are reliable sources. Jessica Kingsley Publishers, their books, this is one of Jessica Kingsley's books that they publish, excellent materials, your website, people like yourself who advocate, look at those kind of sources, National Autistic Society as well, to learn a little bit. But again, don't feel that you need to know everything all at once. It very much is, and I don't mean this to sound a negative thing, it's a positive thing in some ways, but it is a marathon rather than a sprint. Speaker 1 18:45 - 19:04 You know, there's not an emergency situation around an autism diagnosis. It's often a time to reflect a little bit, to think about what things might be like, you know, in terms again of positive and negatives and plan for that to some extent. Give yourself some time. Give yourself some relaxation. Speaker 1 19:04 - 19:40 Those sorts of things are really important, I think. And it is overwhelming. There's huge amounts of information because the so you know the whole thing about again one person with autism is one person with autism it's not only that you have to in a sense understand all of these things in their generalities it's about applying it to your child or to your partner because that'll be different as well and and time will help with that okay thank you so is there anything a practical that a parent of a child that's just been recently diagnosed or an adult Speaker 2 19:40 - 19:53 can be doing in terms of contacting local authorities. I haven't actually contacted local authorities within the Covid period of time. Do you know if it's harder to get hold of people? Speaker 1 19:53 - 20:18 I think it is generally. I don't know, like you, I've not actually been on the end of a telephone to somebody but the sense is that there are, I guess like all of us, local authorities are following their own safety precautions for themselves and their families as well as, you know, relating to their jobs. Not all of them are in protected jobs, so not all of them are considered that they have to go to work. Speaker 1 20:18 - 20:50 Some of them are. There's bound, I would say, to be some additional delays on top of the delays that previously existed. But one of the things that did occur to me when I thought through the process, for example, of when somebody's diagnosed, I'll just explain it a little bit for people that might not be that familiar with this, but when somebody is diagnosed with an autism spectrum disorder, then automatically, by virtue of the diagnosis itself, it means that the person can be considered to have a disability in relation to the Equality Act 2010. Speaker 1 20:51 - 21:25 and that's I would say 99% of the cases, little tiny loopholes maybe. Now what that means of course is that those authorities that then need to make perhaps allowances for people in education, in work and so on need to be told. So the process that I go through with my people that I see for diagnostic assessment is following the diagnosis that we let their GP know and the GP is requested to let the local authority know. Now, that has two consequences. Speaker 1 21:25 - 21:46 One is for the Equality Act-related rights and benefits and things like that. The other, which is slightly different but similar, is for educational allowances and educational rights and things to come in. The disability right is separate. The school must make reasonable adjustments, end of, whether the child has educational needs or not. Speaker 1 21:46 - 22:16 But if the child is seen to have special educational needs, then there are different things that must also follow. and one of those is potential for a statutory assessment of their need which may be followed by an education, health and social care plan. And that process, so just to go back to what I was saying before I explain that, that process is almost always paper-based. There's none of that that involves a face-to-face, immediate anyway, face-to-face contact with people. Speaker 1 22:16 - 22:50 So, in theory, all of that can continue. It might be that if a person puts a request in and a request for a statutory assessment can be made by a school or a parent or anybody working with the child, basically. that can go ahead that request can still be made that letter can still go in it might be that it's not read quite so quickly as it would otherwise be and it might be that it's not acted upon quite so quickly in a face-to-face way but my understanding is that their statutory guidelines on timetabling continues. Speaker 2 22:51 - 23:08 Okay so nothing's been put on hold then because of the Covid things still should be taken along so say for example someone's got an appointment and as you know they wait for such a long time for these appointments. Do you think that the appointment might be lost or do you think it might be able to be done online? Speaker 1 23:08 - 23:33 It wouldn't be lost. Well, I've spoken to quite a few colleagues, clinical psychologists throughout the UK, really, just on social media and things about what their processes are. What they're saying is obviously almost without, well, without exception, that there aren't any face-to-face appointments going on. Many of them, though, are looking at doing some information gathering by Skype or by Zoom or by telephone. Speaker 1 23:34 - 24:23 So I'm doing that as well in my own practice. So part of the diagnostic assessment for autism is about taking a very detailed history of the child's developmental history and current presentation and there's no reason why that can't carry on by telephone so long as of course the service is set up to do it that's what needs to happen and many of them are setting themselves up to do that kind of work remotely it probably means you don't keep the actual appointment so if it's 10 o'clock tomorrow you're probably not going to keep that appointment but they've all said to me that those people are not going to go down to the bottom of the waiting list by any means they're still at the top now of what may become a waiting list but they're trying to offer appointments to people by Skype or telephone in the meantime. Speaker 2 24:24 - 24:47 Okay, I just wanted to interject here. I was given some occupational therapy activities ideas for some children and adults obviously during this difficult time. I just wanted to read a few so people listening in thinking of what can we do. So what they're saying is some ideas for keeping active, entertained, which is obviously going to be difficult at some periods of time in the day. Speaker 2 24:47 - 25:05 Obviously with the sun being out, it makes it a little bit easier. So what they're saying is do exercise with the children if you can or adults. So warm up, marching on the spot for 20, marching with high knees for 20, walking on spot and clapping the hands above the head for 20. and then waving both hands in front of you for 20. Speaker 2 25:06 - 25:29 Other things you can do is throwing and catching games. If you haven't got a ball or a bean bag, tie a scarf up in knots and throw and catch in partners or family groups, varying this number of throws from 10 to 100, changing direction or throwing randomly if you're in a group. Something else is tin can weights. So if you've got two tins, two tins of beans or whatever from the cupboard, try the following exercises. Speaker 2 25:29 - 25:48 So tin in each hand, by shoulders, bent elbows, and push up until arms are straight, count to 10. Various different things you can do with lots of these tins, or a little bit heavier if you want to. Squats is something else that you can do. And something that's really popular now is the Body Coach TV on YouTube. Speaker 2 25:48 - 26:21 So PE with Jo will be starting every Monday at nine o'clock, and it's every day. So exercises that you can do at home. So if we just type in the Body Coach TV and it's PE with Jo. Last thing that they mention is table activities, so obviously puzzles, card games, colouring, crafts, cutting, sticking, junk modelling, you can even use like toilet roll, the boulders that you can dip into paint and you know there's lots of different things that you can do with the children. Speaker 2 26:21 - 26:51 Finger football is another one that's been mentioned, tear up paper into squares and scrunch up to the size of marbles. Mark a goal at each end of a table with anything, a bit of blue tack. Stand at either end of the table and flick the ball with your fingers to try and get a goal. Out of the box of things that you can do, that you can create and I'm sure people will make an Easter cards and what have you for Easter and I think they're the best cards when you make them yourself because it means more. Speaker 1 26:51 - 26:52 Yes, absolutely. Speaker 2 26:53 - 26:59 What type of things did you like to do when you were a kid? What things did you like to do and what did you like to play? Were you into sports or anything like that? Speaker 1 27:00 - 27:19 I was really. I remember thinking back, I used to play with, I had a particular police car that I really liked and I used to play with that going up and down a hill near to where I lived. I did that quite obsessively and really loved it. So outside, quite a lot, doing things with toys outside when I was really little. Speaker 1 27:20 - 27:44 And then when I was about, I suppose from being about 10 or 11, I got into Manchester United. Being in Manchester, you're either going to be Manchester United City or one of the local, you know, Oldham Athletic or somebody. Manchester United was my team and George Best was my hero. So, my mum and dad had a fruit and flower shop and at the back of the shop, it backed onto a chemist with a big wall and that big wall was my practice wall. Speaker 1 27:45 - 28:04 So, I'd be kicking the ball against the wall, commentating. Yeah, but you see in the evenings, late afternoon into the early evening, Kevin's shop was shut, so nobody was in it. So bashing against the wall, George Best, and I used to commentate like the commentator would, so I'd be commentating on myself doing the football. Yeah, sporty things, lots of sporty things. Speaker 1 28:04 - 28:16 I've never been a particularly artistic or crafty person, I can't really do stuff like that. You know, I used to try and do the Blue Peter things with the Fairy Liquid bottles, they never turned out like they were meant to. Speaker 2 28:17 - 28:34 I used to like Tui ball, I used to always like do things with Tui ball. I used to like those, you know the elastics that you used to put around your ankles? Yeah, yeah, yeah. I used to like doing that and obviously I like dancing, so dancing was my thing, tap dancing and what else? Speaker 2 28:34 - 28:47 Oh, I'll tell you what I used to be quite good at as well, playing marbles in the playground and yeah, I used to have my bongies. So yeah, I used to always play with the boys and I was Speaker 1 28:48 - 29:33 in a sense it's you know thinking back to my childhood and thinking back to the sorts of things I would do in the summer and the holidays from school a lot of it was about being outside and I think you know one of the advantages clearly that children now have which they won't realize is an advantage is that quite a number of things have been brought inside and they're all the kind of things that we've been talking about encouraging children sometimes away from you know away from screen time away from but at the moment some of those things are a lifesaver I think for for people with children not necessarily putting a child in front of a screen the whole time I don't mean that but you know it's not as easy to go out but there's facilities there's things that people can be doing. Yeah so people are looking for you on social media where can they find you? Speaker 1 29:34 - 30:19 at carol.phd is my twitter so stop with two t's at the end yep yep carol without an e and then s-t-o-t-t phd um and i'm on facebook with the carol.phd page as well so those two and we also have a beginning with a presence online with our website um and it's beginning with a all one word like it were three you know beginning with a all in one word and we've got a Twitter and Facebook page for that as well, as well as our website, so any of those really. How's your book coming along on sleep? OK, yeah, it's good. Speaker 1 30:19 - 30:51 It's actually out there, but we're not massively encouraging people to do terribly much about it at the moment. I'll tell you why. We started three or four years ago with the iBooks author software and it's not hugely kicking off. What I'm getting from, for example, I spoke to Jessica Kingsley about it and they were saying that people are tending to go for apps rather than this particular platform and I don't know whether they'll update it or what but basically it's a it's a platform that is rather Speaker 1 30:51 - 31:44 like an app it makes for a very interactive e-book so e-books we all know about I guess but the iBook author thing gives you not just the e-bookness so that you can click on links but actual interactions that you make with the book So we did it in that format at first and it's been on the Apple store for a little while as such but we didn't advertise it because we kind of want to develop it a bit more and we've spoken to Jessica Kingley about that and we're continuing now. What we're doing is making it a little bit more just like a normal ebook without all the interaction stuff. and it's about sleep and the way that we're doing it, what we're hoping to do is a number of books, if people like them, if it's useful, a number of books which take autism and the characteristic sort of features, very broadly speaking now, but the sorts of things Speaker 1 31:45 - 32:10 that people use as a basis for diagnosis, I suppose. So things like the understanding factual things very well, knowing lots of things about things, having sensory issues quite often. So we lay those things out at the beginning of the book and then we talk about how each of those might provide some difficulties in relation to a particular topic. So this one is about sleep. Speaker 1 32:10 - 32:42 So it's kind of looking at how somebody perhaps with significant sensory processing issues may need some help in settling into their bedtime routine, make sure that the cooking smells aren't around the house anymore, make sure that the windows are not facing out onto a very noisy area and if so try to do something to minimise that. So it's almost like taking autism-like characteristics, some of which are strengths and some of which are challenges, and looking at how that might impact on sleep really. Speaker 2 32:43 - 33:23 Okay, I look forward to seeing it when it's dished out to everyone. So the second book now that we're going to be talking about is called Something Bad Happened, a kid's guide to coping with events in the news and this is by Kara, spelled K-A-R-A McHale, M small c H-A-L-E, another Jessica Kingsley publication and the themes within the book is dealing with feelings, staying calm and understanding probability. So why have you chosen this book and can you share maybe that you'd like to read as well from the book? Speaker 2 33:23 - 33:27 that's something that really you think is beneficial to read out to everyone? Speaker 1 33:29 - 34:25 Let's have a think, I'm just looking now, I think in a way it's about adapting what the book says in some ways, it's not necessarily all very relevant to the moment and let me explain that, what it's talking about generally speaking is if something bad happens in the news And quite often children with autism, adults with autism, any of us really, might get very focused on that and not be able to understand the risks to ourselves. Now in a sense that's a little different, it's kind of in some ways talking about perhaps terrorist activities, things that have happened in distant places and that part of it is a little bit about talking to the child about the lower risk to them. Now clearly that's not quite right in this situation because this is an experience that we're all in touch with, that's accessible to all of us and the consequences of it, the COVID-19 issue, is a consequence to us, to everybody worldwide. Speaker 1 34:25 - 35:03 So it's a little bit more about adapting the kind of advice really. So it is about talking about risk, it's about a child understanding that we don't have to stay in because the moment we go out we'd immediately get ill. That's not what it's about because I've spoken to some children thinking that oh well if we're not allowed out then we'll get it from the garden because it'll be in the air and it'll just come and make us ill. So it's really about explaining that the reason for us having to stay where we are as much as possible is because if everybody did it all at once it would be really unhelpful and dangerous thing. Speaker 1 35:03 - 35:47 But for us to be in the garden, for us to be on our daily walk, to put that in perspective, it's very likely the case that we're not all going to get ill. That's the point of doing it really, it's so that we don't. And so that part of it is about understanding probability and although the book is quite childlike in its approach, it is aimed at a broad range of ages actually so it puts it in terms that you can speak to a very much younger child about but if you get into the older mid to late teens you can talk about probability and they've got some quite good little exercises that you can do which for example one of them going back to your points about marbles I don't know whether people have marbles around anymore but little stones Speaker 1 35:47 - 36:35 or whatever and what they do is they've got one coloured stone and then one which is just a sort of neutral thing and they put those two in a jar or in a bowl and they say to the child okay close your eyes and pick one or the other so they pick one or the other and they do it 10 times and maybe five of those times they'll get the colored one five of those times they'll get the neutral one and then they put loads and loads and loads of neutral ones into the bowl with that one colored one and then tell them to pick and of course they keep picking the neutral ones then very unlikely they're going to pick the coloured one and it's about demonstrating that it's extremely unlikely still that this awful event is going to happen to them and particularly if they follow the rules whatever the event is so that works for COVID-19 and it works for other things as well. Speaker 2 36:37 - 37:23 Okay so with reference to coping strategies there's a particular adult that I know who he's finding it extremely difficult and the reason is he lives with his mum and dad and there's quite a few autistic adults that live with their mum and dad and they're feeling so overwhelmed because they're their only point of contact if you like and they're their only loved ones so they're worried that because they're obviously getting on a little bit yes and they're worried that they're going to die what's going to become of them how can you reassure um adults that it's like it's become now where i've seen a few adults it's just become so overwhelming for them. And also some really tragic cases where I've seen a couple that I've read now, one in America, where a young girl took her own life because she just couldn't cope with it all. Speaker 2 37:24 - 37:30 So what advice would you give to adults maybe listening in that was feeling really overwhelmed? Speaker 1 37:31 - 38:03 I think one of the pieces of good advice that I've started to follow myself is not continuously to watch the news. whilst, you know, I'm not suggesting that the news is saying anything that isn't true, I'm sure it is, but of course the news is the news and it's going to report things that are newsworthy. And I think one of the things that I said to children that I've been speaking to, because I've done some Zoom calls and things with children, family and so on as well, is that actually if you see it on the news it's probably an indication that it's a quite rare thing. Speaker 1 38:03 - 38:53 It turns things on its head a little bit rather than thinking, oh gosh, I just saw that on the news, that means it's going to happen to me. It perhaps means it's not going to happen to you because it wouldn't be newsworthy if it was happening to everybody. for the person themselves feeling overwhelmed first is again to give yourself that time and space away to think for yourself about the little exercises to do with probability really you know we're all doing this because we're being told we must do it and we must do it but it makes it a lot more alarming for every minute of our day-to-day living it's there with us the whole time yeah but it's still the case that actually the real figures in the end, and the BBC are telling us this as well, are relatively small compared to the Speaker 1 38:53 - 39:14 whole population. And it's a really hard concept to grasp that, I think. It's important for us in the moment, but when this has passed in years to come, we're not all going to be looking back at that year when everybody died by any means. We're looking at that year when everybody did whatever they could to make sure this didn't turn into that. Speaker 1 39:15 - 39:17 and I think that's that's a bit of that's helped me anyway. Speaker 2 39:18 - 39:34 So any tips on keeping children occupied? obviously day-to-day, they're not going to, I think what parents are trying to do as well with reference to teaching, they're expecting that they should be like the teachers at school. Speaker 1 39:34 - 39:35 I was going to say, yeah. Speaker 2 39:35 - 39:37 It's not, it's not, it's not. Speaker 1 39:37 - 40:20 It's not, is it? I mean, I've spoken to people, and I'm sure you have Anne a lot, who are homeschoolers, and the homeschoolers that I know, and many of them well, have prepared for that for a year before they've done it, they've got support around them set up before they bring the child out of school, they've got their curriculum, their material, everything has been set up and planned for such a time, you know, they haven't been told two weeks ago on Friday, oh your child's now going to be at home for the next whenever, you're the teacher, of course it's just impossible and I think that people have felt a little bit guilty about that, that they should be homeschooling, of course anyway it's the Easter holidays now, You know, they wouldn't be in school, most of the children. Speaker 1 40:20 - 40:52 I think it's about a sensible balance, for me it would be about a sensible balance of some activities which need the child to be a little more absorbed and concentrated, others to be, if they can be, out in the garden playing, learning by play, doing all of those things that we all kind of wish schools would do sometimes really. Be a bit of a forest school in your garden, that sort of thing. I think one of the things that's really useful, and perhaps for people with autism as well, is some structure to that. Speaker 1 40:53 - 41:08 So however much you want to put into it is, again, a quite personal thing. But I've been talking to families who are doing brilliantly by having a proper school routine. They get up in the time for school, they put the school uniforms on, can you imagine? Put the school uniforms on, great. Speaker 1 41:08 - 41:18 And it's working for them, might not for everybody. But it's giving them that structure. School uniform comes off at 3.30 in the afternoon, and that's then a different time of day. And they do it a little bit like that. Speaker 1 41:18 - 41:38 But not everybody can and wants to do that. So if what you're doing is playing out in the garden for a while, then so be it. But structure it. I think feel that if you're doing that, you're doing that with the purpose of having intended to, rather than thinking, oh God, I should be doing the math session now, or I should be doing the whatever session it is. Speaker 1 41:38 - 41:42 Structure it to be free. You can do that, if that makes sense. Speaker 2 41:42 - 41:56 I try to keep to some sort of routine as well. Some people are like staying in their pyjamas all day. I couldn't do that. For me, it's just get up, get washed, do your hair, put a bit of makeup on if you feel that you need to, you know, if it makes you feel a bit better, why not. Speaker 1 41:57 - 42:30 Definitely, get into as normal a routine as you can, I would suggest, and maybe have some days off. Maybe you have a duvet day more often than you've I mean maybe you don't have duvet days, I can't imagine Anna on a duvet day. But I think the structure is still important and not expecting too much of yourselves as parents to being the one that has to keep your child occupied the whole time. They can keep themselves occupied to some extent as well and that's a good thing, a good strength, a good learning thing for them as well. Speaker 1 42:30 - 43:18 How to have them think about what to do is important and you know another thing that I've done I'm setting up I haven't actually done it yet I haven't started doing it but it's some zoom sessions with children, some of whom have autism and some neurotypical children, family, whatever, just asking them, so me asking them about what they're doing, what's going on, you know, what kind of things are you enjoying, what kind of things are difficult, and then the plan is to bring them all together at the end of this week and then the end of next week and introduce them to each other on Zoom. now again that's a good idea yeah people can do that with their own families not necessarily i know loads of families now have been doing for lots of time skype sessions with grandma and grandad and aunts and uncles and whatever but maybe getting the children there and just Speaker 1 43:18 - 43:27 having a chat with your neighbor because you can only see him from across the street now but having a chat on zoom or your cousin in Manchester or whatever bringing together a group and doing some group zooms. Speaker 2 43:28 - 43:53 Yeah I've seen some great stuff on television as well like people going out on the street at six o'clock and all doing exercise you know from their houses with the music or I've seen I actually saw a really lovely one where there was a hundred children and teenagers, basically, and they're all sort of love singing. And they've all created a song together via Zoom. And the people are just using their imagination. Speaker 2 43:53 - 44:07 And there's some wonderful things that are appearing. You know, we've been doing online workshops. We started last couple of weeks now with Paul Isaacs, who's one of our consultants. So we had 25 parents one week and 25 parents the week after. Speaker 2 44:07 - 44:28 and you know you could see that they've got a lot out of the session asking questions they enjoyed it so they had an hour where they could focus um so yeah there are lots of different things that you can do so so you're into your music so remind me again what music you're into bluegrass oh that's it bluegrass which is kind of straw in the mouth Speaker 1 44:29 - 44:51 Now, if my bluegrass friends are listening, they'll disagree, but it is a bit like country music. It's a bit more kind of vibrant, perhaps, than country music, generally speaking. But it's defined by the instruments in the band. It's called bluegrass because it originated in Kentucky, where the grass is thick and the sun shines on it and makes it look blue. Speaker 1 44:51 - 45:26 So it's to do with that. But yeah, they usually have a double bass, a guitar, a mandolin, violin, sometimes a dobro, and it's those, dobro is like a slide guitar, and it's those instruments that define, so no drums, they're not allowed, no brass or wind instruments, they're not allowed, And so because it's a particular genre, it's the kind of thing that people in Kentucky would do at the end of a working day in the fields as a social sort of get together, that kind of music. So we do a bit of that and we're just talking about what you were saying about getting together. Speaker 1 45:27 - 45:50 We're now in the second day of a songwriting course that we're doing online. We were due next week to go, we go each year to a summer school, or it's Easter really, but they call it summer school, at a school in Oxfordshire, Kings Hill or something. It's a boarding school in Oxfordshire. Clearly we can't do that this year. Speaker 1 45:50 - 46:29 One of the courses that was going to be offered at this summer school, it's called sore fingers because it makes your fingers sore for the week and you go and get taught, but one of the courses was songwriting. So the person that would have been running that course is starting to develop some of these things online and we're doing some of that with her this week. So we're all joining this around 11 o'clock each morning talking about songwriting and how to go about writing a song which is great. One of the things that I've thought about all of this in a sense is that whilst it is difficult, there's no denying it's difficult for people at the moment, but I think there'll be some longevity in some of these things that we're doing. Speaker 1 46:30 - 46:32 I think we'll carry on doing them afterwards. I hope we will. Speaker 2 46:33 - 46:44 Yeah, and I think people are also contacting people who they haven't spoken to for a long time. That's something else that, you know, reconnecting. If you're hearing noises in the background, it's Angelo. He's getting a bit hyper, I can hear. Speaker 2 46:46 - 46:58 So, yeah, so just if people listening and wondering what's that noise, it's Angelo with his high-pitched squealing. He's obviously enjoying watching something husband Sean's looking after him while I'm doing this. Speaker 1 47:00 - 47:06 Are you able to do as many walks as you ordinarily would or he's not well? Speaker 2 47:06 - 47:56 Obviously we've all been not well yeah so but we're just sticking to one a day now so and I've got him a trampette that I've just bought yesterday so hopefully he can have a little bounce on that as well. I've got an aerobics ball as well so he's just trying to think of different things that we can do with him so he's just not plonked in front of the computer all the time and the other thing is try and keep him out the kitchen. because Angelo loves his food so you've just got to be on kitchen watch. For people listening in, just to remind you as well that it's the Autism Hero Awards in November, hopefully you will be still going ahead and if you want to nominate somebody there's 12 different categories So if you check out the charity website, www.annakennedyonline.com, you'll see the events page Speaker 2 47:56 - 48:23 and the Autism Hero Award. So if you feel you would like to nominate someone that goes the extra mile, It might be a parent, it could be a carent, or even a carer, or someone professional even like Carol here, someone might like to nominate Carol. A business, a reporter that writes particularly well. Yeah, just anyone who you feel, you can check out the categories, there's 12 of them. Speaker 2 48:23 - 48:49 and send in your entries with 500 words, a photograph of the person. So the cut-off date is the first week in September. So just to remind you, www.annakennedyonline.com. If you want to follow me on social media to see what I'm up to or whatever it is that I'm sharing on social media, I'm at Anna Kennedy One on Twitter, Anna Kennedy Online on Facebook. Speaker 2 48:49 - 48:56 and at Anna Kennedy OBE on Instagram. And just to remind people, Carol, where are you again, if people want to find you? Speaker 1 48:57 - 49:09 At carolstockphd, usually does it. That's my Twitter and my Facebook page. And beginning with A, which is like three separate words, but all crammed together in one, beginning with A. Speaker 2 49:09 - 49:13 So if people would like to have an independent diagnosis can they still contact you? Speaker 1 49:13 - 49:48 Absolutely yeah if you go to the beginning with a page just be sure about the spelling because it's beginning which has got a lot of ends in funny places but beginning with a then on there you'll see a link to a screening pack which we always ask people to complete before the face-to-face assessment anyway so there's no reason why that can't go ahead at all and that just covers um about six questionnaires depending on the age of the person for them to complete and then we work together on the responses to those questionnaires by Skype or telephone or so we always do that that's that's the process. Speaker 2 49:50 - 49:53 So what are you going to be doing with yourself then for the next few days? Speaker 1 49:53 - 50:46 Well I'm going to be finishing off the development of an online training course with we were due to deliver a training course to Cordwell Children's in Stoke-on-Trent okay in two weeks time clearly we can't do that face to face so we are close to finishing the development of that we need to be because it goes out in two weeks but it still obviously needs some work doing to it we've been working on it a little while but of course current circumstances have meant that we've got to really focus on that so it's about bringing together the videos we've got lots of video materials and information sheets, quizzes and stuff for people to do on the course. So we're putting the final touches to that and we're doing that in Moodle, an account, a thing called Moodle, which if people have done any distance learning sort of courses, Moodle is quite a common platform to be doing that on. Speaker 1 50:46 - 50:55 So Gary's doing all that technical stuff and I'm doing the delivery, you know, the sort of virtual front line, I guess I am. Speaker 2 50:55 - 51:07 Okay. So people listening in for Caldwell Children, obviously I know what it is, so how would you describe it so people wanted to have a look to see what it was all about? Speaker 1 51:07 - 51:45 Well Caldwell Children's is a charity that's been around for a very long time and it's been hugely supportive of people with autism in that time. Historically they would provide assistance for funding things like additional occupational therapy, lots of things that weren't easily available by the NHS. They're not doing that quite so much now is my understanding because they've put a lot of time and effort into this state-of-the-art complex in and around Stoke-on-Trent. in Staffordshire anyway, which is at the moment up for up to 16-17 year olds, will be developing for adult services as well and is superb. Speaker 1 51:45 - 52:13 I mean as far as I've read about it, we'll be seeing it as soon as we can do, but it's providing all of the things that NICE guidelines suggest should be provided for a diagnostic assessment and the follow-up that then comes after that. So you know with the diagnostic team and then the OT, speech and language therapists and various others leading into supporting moving into education and what's needed in educational things. Speaker 2 52:13 - 52:17 Is it private or anything? Speaker 1 52:18 - 52:22 It's the guy, I don't know his first name but it's a person, Cordwell. Speaker 2 52:22 - 52:23 John Woodward? Speaker 1 52:24 - 52:46 Yes, so it's come from him and their organisation, their charity, so it's independent of the NHS. I don't know exactly what their arrangements are in terms of their staffing. They're not staffed by NHS personnel as far as I understand, but they're very closely linked with local NHS services, working with NHS services of course to deliver what's needed. Speaker 2 52:47 - 53:01 So I'm just thinking about other things that we can talk about with reference to Covid that might help people listening in, adults is there any other suggestions that you can make to help people deal with it day to day? Speaker 1 53:01 - 53:41 Yeah I mean I think one of the things that I've wondered a little bit about is There's many, many good things going on in terms of suggestions, in terms of activities. When I've spoken to people, both people with autism in their families, people without, some of them feel a bit over inundated, to be honest, with all of the brilliant suggestions, all of them are. but which one do you do? You kind of google something online and you think oh my goodness where do I start and I think one of the things would be to focus, to think about something that your child, your relative would enjoy doing, focus on that and develop it with a little bit of Speaker 1 53:41 - 54:14 engagement with it, a project almost rather than thinking right here's today so what we're going to do is that thing I saw on my group yesterday and that other thing that somebody else said do that a bit too, yeah, but also a project, something that you can develop over the time I think would be a useful thing as well. One thing that I quite like was, I don't know if you've seen it, but it came from Lego, I don't know whether it was Lego the organisation or somebody just made it up, and it's a schedule, I'm just looking at it now, it's got 30 days in it, and on each day it says a suggestion. Speaker 1 54:15 - 54:38 So, you were hired by an amusement park to create a new rollercoaster is day one, okay? So on day two it's something different, on day three it's something different else. And what I'm thinking about the little group of children that I'm talking to is to get them all doing that. So on day one they're all going to make a rollercoaster and then they'll show each other on day three or something. Speaker 1 54:39 - 54:51 So that appeals to me, that kind of thing, like themes that people can get involved in. And I think that that appeals to autistic people too. to some extent, you know, a bit of a focus on something. Speaker 2 54:52 - 55:47 Yeah, most definitely. I know my son Patrick, he's been furloughed now from working obviously at Pinewood, so he's trying to keep himself busy by watching lots of different documentaries, doing research, so I think he's liking the idea of chilling out at home and obviously he's been unwell and he's on the road to getting better now but he's doing a lot of research of stuff and then coming down saying oh mom did you know this did you know this obviously he's still got his special interest of dinosaurs and looking up any new information that's coming up but he is quite good at sort of looking after himself as in keeping his mind occupied if you like my only thing is that I worry about is that he's spending a little bit too much time in his room and I'm trying to get him to do jobs like clean the Speaker 2 55:47 - 56:06 car or something a little bit active because obviously he's been having quite an active job doing a lot of walking to be at home and now it reminds me of the years when he did spend quite a bit of time in his room and that's not where we want to go back to again. Any tips with sort of encouraging? Speaker 1 56:07 - 56:45 Yeah, I think information sharing as well is a good thing because I think one of the things exactly that what you're saying really that many people with autism are very keen to actually get onto the web, look at stuff, research it to the nth degree with brilliance, you know, absolute knowledge about that thing but one of the difficulties then obviously is that that might become isolating but One of the things that I've been thinking is about information sessions. So the person's doing that, an adult like Patrick, somebody with a particular interest, this is their opportunity for them to come and tell you all about it. So I know they do already, but you could have your information sharing session. Speaker 1 56:45 - 57:10 So what have you been doing? What have you found out that you didn't know before? So it's not necessarily an active thing in terms of being out and about, but it's about maintaining that lack of, you know, not becoming socially isolated in that, but using the strengths that the person has, their interests, and an opportunity, you know, because so often I think people with autism experience all of our kind of, oh, you know, you've told me about that already sort of thing. Speaker 1 57:10 - 57:17 Well, here's your chance, in a sense, do you know what I mean? And I think that could be quite a positive thing as well. Speaker 2 57:17 - 57:23 Yeah, and I've given him a job as well, like for example the bathroom upstairs, that's your job to clean it. Speaker 1 57:23 - 57:24 Yeah, yeah, exactly, yeah. Speaker 2 57:24 - 57:26 Too much to his disgust. Speaker 1 57:27 - 57:52 I've also, there's a friend that visits us often, a young man with autism who loves playing chess, so we've just set up our online chess, we play chess every day online and it's fun, you know. It's fun. It's making that little bit of effort from my point of view, and I guess it is from his. He might not every day at five o'clock quite fancy doing it, but you're making the effort that none of us would have done previously. Speaker 1 57:52 - 57:56 I might have said to him, I'm a bit busy right now, let's do it tomorrow. Now we're doing it. Speaker 2 57:57 - 58:00 How are you finding being at home with Gary all the time? Speaker 1 58:01 - 58:20 Well, it's a good question, but it's OK because we often are. It's interesting because until about six years ago, I worked in Cambridge University. Gary worked for a computer company in Cambridge, Acorn Computers as well. As traditionally, many people are meeting at the end of the day doing that. Speaker 1 58:20 - 58:40 We work together now, so we're quite used to being together the whole time. So it's not such a change in that respect and we're lucky in that we've got an office building out in the garden which is where my clinic is. So I've got my clinic room and the bigger of those two rooms is Gary's room where he does all of the development stuff. So we're separate in that sense as well. Speaker 1 58:40 - 58:56 So he's still quite often in there doing his work. I might be in a room in the house doing mine or in my little room in there. So not that different to be honest. We're lucky it hasn't come I'm sure it is difficult for others who are more used to having their space and time away from each other. Speaker 2 58:58 - 59:13 Yeah, I'm loving some of the Facebook posts of parents or some of the memes that are popping up. Yes. We're coming to the end of the programme. I can't believe that we've been speaking for an hour and it's just gone really, really quickly. Speaker 2 59:13 - 59:36 Lots of information there. Thank you so much. And always a pleasure to speak to you, Carol. yeah no and it's just yeah it's just been and also people um i want to read your article that you're going to write for me which i'm telling you about now okay next week it'll be on the charity website so again thank you everybody thank you again carol Speaker 2 59:36 - 59:52 I want everyone please to keep safe, keep active, you can only do the best that you can, don't knock yourself, stop watching the news, just watch it once or twice a day and just say thanks very much. So goodbye everyone and stay safe, stay strong. Speaker 1 59:52 - 59:55 Thank you. Goodbye. Bye.