All Things Autistm - Lucy Smith 150321..mp3 ========================================= Speaker 1 00:01 - 00:15 Hello, this is Anna Kennedy. We're talking all things autism and we're on women's radio station. And yes, I've got another new guest today. But before I introduce my guest, just wants to chat over a few things that have been going on. Speaker 1 00:15 - 00:44 And if you've missed them, don't worry. You can catch them on the charity website, which just to remind you, is www.annakennedyonline.com. So just to remind you about our transition workshop, we had our first one, which was booked up. and so many questions asked by parents and then they asked if we could have a second one and that's what we're doing at the moment so this one's going to be a legal one by my husband Sean Kennedy who's a barrister who's going to be talking about transition Speaker 1 00:44 - 01:32 so any legal questions that you may have please send them to the charity website and we will put them forward to Sean. So if you cannot attend don't worry once it's over we will be recording it and it will be then put up on our YouTube channel again Anna Kennedy Online and then you can watch all of our past YouTube chats so we've had chats with like Carrie Grant, we've had chats with Richard Milan another one of the good friends of our charity lots of different people and also Jo Locke who's one of our charity patrons our very first charity patrons who's a world kickbox champion and autistic so she is always doing lots of different workshops so keep checking out the events page on the charity website just to remind you www.annakennedyonline.com. Speaker 1 01:32 - 02:13 I also share lots of stuff that I'm doing on across social media so that's at annakennedy1 on Twitter, annakennedyonline on Facebook and annakennedyobe on Instagram. We've also got our expo at the end of march normally we would be at brunel university but no you never know there's some light at the end of the tunnel we might be moving towards doing events where we can all meet face to face rather than via zoom or skype or all these other um social media channels so We have Sienna Castellon who's going to be talking about how to support autistic girls. Ali Knowles talking about dealing with anxiety, which is a lot that around at the moment for families. Speaker 1 02:14 - 02:48 Richie Smith, the autistic adoptee from a troubled childhood to Autistically Awesome, one of our Autism Hero Awards winners. Pamela Kosminski, Autism Family. Dr. Carol Stott, Autism in the Courts and Tribunals. Annie Sands, Personal Independent Payments, those lovely forms that we hate filling out and Juliana Wheater, My Journey with Autism, Busting Myths and talking about relaxation and I've just actually just posted a new post from Juliana who's talking about back to school and relaxation and techniques. Speaker 1 02:48 - 03:30 I'm sure there's a lot of parents would like to learn how to relax a little bit more while they're at home. Again, if you miss the expo it will be online but it will be on for two days we're going to have clinics as well so if you want to ask questions we've got clinics so you can book your slot. Two other things I just wanted to share Born Anxious which is the clothing line that I'm ambassador for we're expanding on our shop if you like so we've got lots of lovely goodies on there so we've got t-shirts Harvey Price as well has just launched his new Harvey Price clothing collection and Angela's been wearing some of those and they are great. Speaker 1 03:31 - 04:39 we're expanding on that all the time we've got makeup bags we've got all sorts celebrating strong women so if you want to check that out it's www.bornanxious.co.uk I'm still persisting with my petition which is obviously better social care because there's a lot of families out there that are unpaid carers that are not registered with local authorities so they don't know how many families apparently I think it's one in four local authorities that don't know how many unpaid carers are at home looking after their adults so please please sign my petition I'm nearly at seven and a half thousand signatures in the last two weeks so that's www.change.org forward slash Anna petition again www.change.org forward slash Anna petition and that again is on the charity website so my guest today is Lucy Smith She is a proud associate trainer for the Curly Hair Project. The Curly Hair Project actually came along to one of our expos a few years ago. Speaker 1 04:39 - 04:58 Amazing. An award-winning social enterprise which supports people on the autism spectrum and the people around them. Her work with the Curly Hair Project has driven her ambition to make changes for autistic young people and adults, which is why she has now established Inclusive Change Limited. Welcome, Lucy. Speaker 1 04:59 - 05:17 Hello, thank you for having me. And thank you for coming to chat to me. Sorry we can't meet at the Covent Garden radio station, but this is the next best thing. So before we go and talk about anything that you've set up, anything to do with autism, let our listeners know who is Lucy Smith? Speaker 2 05:19 - 05:31 Well, first and foremost, I'm a parent, so I'm a mum. I live in Bristol with my other half. We've been married for 31 years this year. I can't believe that. Speaker 2 05:31 - 05:38 It seems like, I know, I know. We got married very young. We were 18. Well, I was 18. Speaker 2 05:38 - 05:48 So yeah. And as a parent, and my connection to autism is that I have two children. One has just turned 13. The other one is 14. Speaker 2 05:48 - 06:07 And we found out that my my eldest was autistic at the age of 11. So that is my my connection to autism. You've got teenagers at home, I bet you've got your hands full then. Yeah just a bit, just a bit. Speaker 2 06:07 - 06:21 So we've got we've got my eldest is now 14 and we've known that they're autistic since since they were 11. Last day of year six in primary school. That's when we got their diagnosis. So they went, yeah. Speaker 2 06:21 - 06:29 My youngest also got a diagnosis at the age of 11. Guess what? The last week of year six in primary school. Speaker 1 06:29 - 06:33 Wow. Yeah. You couldn't have predicted that, could you really? No. Speaker 2 06:33 - 06:59 No, no, no. Not at all. So both of them have their own challenges. And since finding out that, I've kind of become kind of all encompassed around the world of autism, not just for my own family but also because I just think we need to make a difference in the world for people in the next generations coming through to be a Speaker 2 06:59 - 07:21 bit more positive about things. So that's that as me as a parent. If you want to know a bit about me as my career and background, I spent actually 16 years I spent as a law enforcement officer. So I worked in, yes, yes, I worked in law enforcement for 16 years. Speaker 2 07:23 - 07:25 Prior to that, I'd done lots of different jobs. Speaker 1 07:26 - 07:40 I tend to be quite vague, but I started off as a customs officer Speaker 2 07:40 - 07:58 So in my late 20s, I joined Customs and was an investigator with Customs. And then the civil service, they like to chop and change things around. And so Customs then became SOCA, the Serious Unorganised Crime Agency. And so I moved. Speaker 2 07:58 - 08:06 Yeah. Yeah. And off I went to go and work in the Serious Unorganised Crime Agency. And then nobody liked SOCA anymore. Speaker 2 08:06 - 08:23 So they wanted to change the name to the National Crime Agency. And so I ended up working in the National Crime Agency for the last few years of working in that part of my career. And I did a lot of exciting stuff, believe me, very exciting stuff. Any exciting cases? Speaker 2 08:24 - 08:41 Oh, let me think. Let me think. I don't know if I can say many of them on the radio, but I dealt with mostly class A drugs, smuggling, those kind of things. So, yeah, I got to go to some interesting places around the world and things like that. Speaker 2 08:41 - 08:44 So, yeah, it was good fun. Yeah, it was good fun. Speaker 1 08:44 - 08:56 Yeah, my son's into crime at the moment and there's those magazines that come out now, I think is it once a month or something, about a crime investigation. So, he's always asking me some questions, I thought, I don't know. Now I'll think, oh, I know someone you could ask. Speaker 2 08:57 - 09:13 I know who you can ask. And yeah, I watch TV programmes and films and I'm like, oh, there's a lot of paperwork that goes with that. It all, yeah, all these car chases and things I'm like oh the paperwork they're gonna have to fill out when they get back to the office. Speaker 1 09:13 - 09:18 So when you were younger is that something that you wanted to do or was it just you fell into that job? Speaker 2 09:19 - 09:44 I kind of, I didn't have a clue what I wanted to do when I was younger and I got married at 18 and my husband was in the army So that was why we got married, because back then, he got posted to Germany. And back then, unless you were married, you couldn't live with each other. You couldn't be with each other. And so off I trotted to Germany with my bright-eyed 18-year-old ideas. Speaker 2 09:45 - 09:58 And I just followed him around for quite a bit, to be quite honest with you. Wherever he went, that was where I went when he was in the army. And then I kind of went, oh, do you know what, Rich? I'm fed up of following you around the world now. Speaker 2 09:58 - 10:19 I'd kind of like to have my own career. And at that point I said, well, I'm going to go and go and do a degree. And off I came back to the UK and I said, I'm going to go to the middle of the UK so that wherever you get posted in the UK as in the military, because you have no choice. It's literally they tell you where to go. Speaker 2 10:19 - 10:43 Exactly. I said, wherever you go, if I'm in the middle of the UK and I chose Nottingham, you can reach me and yeah so that that kind of that happened and then I finished my degree and there was an advert for would you like to become a customs officer and I thought yeah quite fancy that so off I went and applied and the rest was history as they say I suppose. Speaker 1 10:43 - 10:55 Can I ask you something with hindsight now that what you know about autism yes you say throughout your career that you had met many people on the spectrum knowing what you know. Speaker 2 10:55 - 11:18 Plenty plenty of people on the spectrum, yes. And one part of my career, I was a lecturer in a further education college. I've done lots of different things, Anna, really lots of things. And I still, to this day, remember those students that I gave extra support to and that I needed to support, particularly the girls. Speaker 2 11:19 - 11:45 When I can remember vividly, she had a She had an eating disorder and we worked together and we did a lot of work on coping with lots of challenges that she had. But at that point, I knew so little about autism that I never put the label on it. I never said, this girl is autistic. We just dealt with the symptoms and we dealt with the behavior and we helped her through her college years. Speaker 2 11:45 - 12:01 And so, yes, I have met quite a few people that I would probably say are autistic. and don't know it. The latter part of my career, more interestingly around this part of it, is that I spent two years working at the University of Bristol. Speaker 1 12:02 - 12:14 Working with academics. Speaker 2 12:14 - 12:33 So I was what they call a change manager and I help people cope with change. And so when senior leaders and management want to bring in some new changes to things, transformational change or changes to processes or whatever they need to do. Speaker 1 12:33 - 12:34 Things that people don't like. Speaker 2 12:35 - 13:01 Things that people don't like, yes. They would call me and they'd go, OK, we've got this change and we don't think it's going to be popular. What can we do about it? And I would either coach the senior leaders and say, right, OK, this is how this is going to be unpopular, this is how people will probably react, let's try and think of some strategies that we can put in place to support them because the change either has to Speaker 2 13:01 - 13:07 happen or you as a senior leader have to make a compromise and not make that change in the way that you want to. Speaker 1 13:07 - 13:09 So you're a problem solver then? Speaker 2 13:09 - 13:32 Yeah, kind of. I like problem solvers. Yeah, because the change could bring so much stress, anxiety, and now all the knowledge I have from the Curly Hair Project and the work that I do there, I actually talk to people about fight, flight, and freeze, and I say... Say that again? Speaker 2 13:32 - 13:38 Fight, flight, and what? Fight, flight, or freeze. Speaker 1 13:38 - 13:39 Oh, freeze. Right. Speaker 2 13:39 - 13:54 Yeah. So the three and in fact, there's a fourth, but I'll talk about that. I won't confuse things. And the three reactions to anxiety and the three reactions to change quite often are things like, well, I'm going to fight this and I don't like it. Speaker 2 13:54 - 14:17 So I'm going to put up a fight and say that it's awful and we're never going to it's never going to happen over my dead body. Yeah. Or somebody might fly, which might be I'm going to leave or I'm going to go sick or all of those kind of things, or freeze, can't do anything about this, not interested, not listening, gonna put my head down, pretend it's not happening, and just carry on doing what I'm doing until I'm told to do anything different. Speaker 1 14:18 - 14:20 I know a lot of people in all three of those categories. Speaker 2 14:23 - 14:46 Yes, yes, and it's natural, it's what happens when people are affected, are impacted by change, they're like, COVID, COVID coming along is massive change. Big time. you can see people reacting in each of those ways based on their preference and their personal, how they cope with change themselves. And so what I would do is help. Speaker 2 14:47 - 15:03 I help people cope with change on an individual basis, but I also help senior leaders, or I did help senior leaders understand how that change would impact their workforce and how it would impact their ability to implement change. Speaker 1 15:04 - 15:13 Okay, so before we talk about the curly hair project, talk to me about, have you got a shop? I have got a shop, yes. What do you sell? Speaker 2 15:13 - 15:58 Everything, oh my goodness, so I have, so my company is called Inclusive Change and as part of that I want to set up a work experience environment for young people who are on the autistic spectrum to come and get some work experience and lots of different things in terms of that. One of the first projects I have set up as part of this is something called, a shop called Your Village Shop. Really great shop, it's in a retirement village, so it's in a care home in North Bristol, on the border between South Gloucestershire and Bristol, which wherever you are in the country that will mean nothing to you, but if you live near me it will. Speaker 2 15:58 - 16:41 And this care home came to us last um last March well actually I approached them and I said you've got a shop um unit empty could I come and open up a shop and they said have you run a shop before and I said no okay they said but I'm a problem solver I said but I can give you a business plan and I can tell you that I'll make it successful And they kind of went, mm, mm, OK then. So we were going to set this shop up, and it was going to open up in April, May last year. They came to us in March, and we could see all this stuff happening around COVID. Speaker 2 16:41 - 16:55 And we could see things starting to get a little bit, oh, touchy and a bit nervous. And the management came to us, and they said, do you think you could open your shop up within 48 hours? What? What, what, what? Speaker 2 16:56 - 17:06 Not quite sure. They said, well, this was March the 19th. And they said, do you think you could open within 48 hours? Because we know we're going into lockdown on the 23rd of March. Speaker 2 17:07 - 17:15 We know we're going to need you. Please, could you open up quicker? And so my husband and I said, go on then, we will. We'll give it a go. Speaker 2 17:15 - 17:45 Let's see what we can do. And that's how we started Your Village Shop. So Your Village Shop is set in a care home, but it's open to the wider community. and we sell everything from bread to milk to artwork to organic soaps to it's amazing that to disability and living aids we sell so many things so people come in and they they come in for a loaf of bread and a pint of milk and they go out Speaker 2 17:45 - 18:19 having bought a 25 pound footstool and a piece of artwork for 100 quid it's remarkable brilliant yeah yeah and where do you get all your stock from then? I have, we go to some of the big suppliers, the big warehouses, but I also have a network of people locally. So I get, for instance, eggs from the free range farm down the road from us. I get meat and fresh like bacon and stuff like that from our local butchers who supplies me and we bring it in. Speaker 2 18:19 - 18:34 I get bakery items from our local bakers who's 10 minutes down the road. And I try and keep as many things as possible as local and sustainable as possible. And people love it. People absolutely love it. Speaker 2 18:35 - 18:55 So we try and do everything that I think about our residents in the care home and in the village. I think about them and I think, right, if my grandparents were in here and they couldn't get out, what would they want to buy? And they want to get everything. They want to get things like greeting cards for their nephews and their nieces and their grandchildren. Speaker 2 18:56 - 19:06 They, and everything. So I try and think, yes, exactly, light bulbs. Today, somebody was asking me for light bulbs, actually. I do, honestly. Speaker 2 19:06 - 19:26 And I go, leave it with me. And then within a couple of days, I'm like, I've got you a light bulb. Honestly, somebody came to me and said, can you get me, what was it, a foot, oh, a shoe horn. I get them anything, if they need it then I get it for them because they can't go out, they can't, they're not online. Speaker 1 19:27 - 19:29 How many people are sort of in that community? Speaker 2 19:30 - 20:06 There's 250 apartments in that particular thing. It's independent living but there are quite a few people who need that extra care and extra support and during Covid there's been a hell of a lot of them, they all want to shield and they they were all looking after themselves and each other and so I mean when we started it was remarkable Anna it was just we had nothing we we had we had to deliver to every apartment we had to to find a way of getting all these these old people online and get them sending us orders. Speaker 1 20:06 - 20:23 Yeah, like my mum and aunt, they're sort of in their late 80s and it's a big thing for them to have a mobile phone. And they said we don't want any of these things where you can, you know, get social media, we just want something where we can make a call and that's it, that's all we want. So yeah. Speaker 2 20:23 - 20:34 Yeah, so it's been wonderful, absolutely wonderful. So I've spent the past year setting that up with my husband. We've grown, we've now got a team of about 12 or 14 staff. Brilliant. Speaker 2 20:34 - 20:52 Lots of people come and volunteer because what we do in the shop is that we give people extra help. So we look out for people, we know somebody who might be um might have visual impairment and we notice them they'll be waiting by the door and we go over and we go and say come on then should we come and do shopping with you? Speaker 1 20:52 - 21:15 None of this amazon lark where you walk in scan the machine then you go out and you don't even have a till you just go straight out. I thought what's happening to all the people and like these busses and all the rest of it everyone's been took off a job. Yes, pretty much so. Yeah, standing out of conversation and having a little chat with the person on the till or anything, all that's just gonna go and I don't like that. Speaker 1 21:15 - 21:18 I like to have a little natter now and again. That's what we're there for. Speaker 2 21:18 - 21:45 They come into us, so a lot of these people, they haven't been out for all day. We don't open on a Sunday for instance and on a Monday they come down, they haven't spoken to anybody for 48 hours and they come in, they have a chat. I don't even know, I'm gonna hate myself saying this now, I don't even care if they don't buy anything, just come down and see us, come and have a chat, come in and just be part of something, you know, be out of your apartment. Speaker 1 21:46 - 21:51 Are there any older adults on the spectrum in your complex? Speaker 2 21:51 - 22:01 Well, there may very well be some who aren't diagnosed. I know of one who Speaker 1 22:02 - 22:30 uh who is um but other than that no I'm gonna say we don't seem to talk a lot about older people sort of past 65 and all the rest of it I have met a few on like one gentleman as I've shared many times before was diagnosed in his sort of mid-70s and he didn't want to do anything with the diagnosis he just wanted to know but I haven't really spoken to that many people sort of 65 plus and I think well what happens to them all? Speaker 2 22:31 - 23:13 They're all still there yeah it depends I think it depends on whether or not there is an acceptance of yes okay I could be yeah or or whether they've had that diagnosis and so So, for instance, my uncle, he's 55 now, he's Down syndrome. I grew up with him as a child and teenager, so I went through my whole life accepting difference because I used to go to all the groups with him and things like that, but he's 55 now and he's in a care home. Now, when he was born, nobody was going to say he's also autistic. Now, I can look at him and I can go, that's obvious, that's there. Speaker 2 23:14 - 23:29 However, at 55, Well, when he was born, being Down's, that was your diagnosis enough. Thank you very much, Mum. You don't need to know any more than that. And now he's 55 in a care home. Speaker 2 23:30 - 23:37 And yeah, there are significant challenges. Definitely. But, you know, yeah. Got Alzheimer's as well. Speaker 2 23:40 - 23:46 He's an individual, though. And actually, regardless of whatever diagnosis, he is who he is. And we all love him for what he is. Speaker 1 23:46 - 24:01 Yeah, I'm always interested in diagnosis and how long it takes to get a diagnosis. So what's it like in Bristol where you live and has it been affected by the changes with the lockdown, Covid and everything else that goes with it? Speaker 2 24:01 - 24:47 I think it's pretty poor here. For us, so I'll speak for myself, so the diagnosis process for us started in, oh god I'm just trying to think of the year now, where are we now? 2015 probably, and that was the first person, a school nurse, who said I'm going to put a recommendation in that you get referred to CAMHS, the Child and Adolescent Mental Health Service, but also the paediatrician, because we'd gone to the school and said we've got some, there's some problems here, and we need help, we don't know where to go, so the school started the bulldozing. Speaker 2 24:48 - 25:26 Two years later we got our first appointment with CAMHS and that's a long time to wait when you've got a child in crisis at nine years old, yes, very very young. So that took us two years to get to that point. From then, for us, it was very quick and it was very swift and we found things out very quickly and we've actually had brilliant support but I do know that other families have not had the same level of service and it can take, I think it can take anything from 18 months to three years to get a diagnosis in the area at the moment. Speaker 2 25:27 - 25:51 I think they've introduced a hub actually, so they've introduced a new autism hub which is fast tracking and helping things get through a lot quicker. I think we did, I'm just wondering whether we did Tom's diagnosis? No, my youngest, he was diagnosed before lockdown and that again was two years I'd say. Speaker 1 25:52 - 25:56 Okay, so talk to me about the Curly Hair Project and how did you get involved? Speaker 2 25:57 - 26:10 Okay, so the Curly Hair Project is an organisation, social enterprise set up by Alice Rowe. So Alice is my boss. I think you mentioned earlier that she came to one of your events. She's amazing. Speaker 2 26:10 - 26:29 She's like this wonder woman. She's an autistic author, entrepreneur, you name it, she does it. When we got our diagnosis back in 2017, you get given loads of handouts and leaflets and bits and pieces. But one of the things I remember the clinician saying to us is, You need to go and find out about the Curly Hair Project. Speaker 2 26:29 - 26:51 Go and find the girl with the curly hair and go and look at it because that really will explain the world for you and your child. And so I did. And it really was the first thing that I've heard that went, that's just ticking all the boxes for me and my family. I read Alice's book, et cetera, et cetera. Speaker 2 26:51 - 27:04 I went to a webinar. I went on a, I went on a face-to-face course and I thought, oh, this is making sense to me. And then about six months later, Alice put an advert out for trainers. And I thought, you know what? Speaker 2 27:05 - 27:12 I'm going to make an application here. I'm going to give it a go. And so I have not looked back since. I love, love working for Alice. Speaker 2 27:14 - 27:36 Her work for me is really simplistic, but can really help explain some really complex stuff. things like executive functioning, which most people just are like, what are you talking about? What now? But she has a way of explaining stuff so that it can make it really easy to understand. Speaker 1 27:37 - 27:47 So you mentioned executive functioning. So we've got some parents that listen in who've got children who've just been diagnosed. So they're thinking, what's she on about? Exactly. Speaker 1 27:47 - 27:50 I'm glad you've asked me that. Speaker 2 27:50 - 28:20 Executive function, for instance, that's part of your brain that controls and helps you do a lot of things in daily life. Things like the planning and the organizing, the motivation and getting yourself started on tasks, for instance. All of that can come from a part of your brain that controls this thing called executive function. And it basically is the skills that get things, help us get things done in life. Speaker 2 28:21 - 28:43 And sometimes when we're autistic, that might not function quite so well. So there might be some glitches. It might not be that we can, we're not very good at planning or organizing or managing emotions and making decisions is all part of this, this part of our brain as well. And so sometimes Just even making a decision about what to do for tea. Speaker 2 28:44 - 28:48 What do you want for tea tonight? I don't know. Or giving somebody too much choice. I don't know. Speaker 2 28:48 - 28:57 It's too much for me. It's going to make me really anxious. Yes, that's exactly my son. My youngest son is exactly that. Speaker 2 28:58 - 29:00 What do you want this morning for breakfast? I don't know. I don't know. Right. Speaker 2 29:00 - 29:12 I'll tell you what. I'm just going to make you one slice of toast with peanut butter on. Yeah, that's fine. But if I gave him choice, if I give him too much choice, it's just overwhelming and he can't cope with that decision making at that particular time. Speaker 2 29:12 - 29:32 So there are things that you can do to train your brain and you can train yourself to help with those things. But also sometimes we just have to accept and go, do you know what? That part of my brain doesn't always work very well. So let's put some strategies in place so that I don't get overwhelmed when all those things happen. Speaker 2 29:32 - 29:50 So if mum asks me what I want to do for tea, okay, what can I do? What can my answer, what, let me think, I'm trying to think how to phrase it. What can I have that I can say very quickly or I can respond with? Because that's my sort of go-to answer. Speaker 2 29:50 - 30:24 And that's what people tend to do. So executive function can really explain why some people can't cope with homework, can explain why people struggle in school sometimes, starting a task, thinking about, oh, write an English essay about how you felt in the summertime. I don't know how to start that. So sometimes it can explain why we need to give people a bit of extra help around those kinds of things to support them to thrive and support them to achieve the things that they can do. Speaker 1 30:25 - 30:43 Okay, so what sort of, so if I was to go to the Curly Hair Project, which I know obviously what is on offer, what can you, what can you, so I'm a new parent, I've got a son on the autumn spectrum, he's just been diagnosed, what can the Curly Hair Project offer me? How can they help me and my son? Speaker 2 30:43 - 31:08 So we run a range of different online webinars now, we also used to run face-to-face groups and that will happen, or face-to-face sessions that will happen again when it's safe to do so. But a lot of our courses, they're incredibly, there is a charge, but they're very affordable. And we run things like an introduction to autism. So what does it mean to be autistic? Speaker 2 31:08 - 31:23 How does it, what's this all about? How do I find out more about this to start off with? Things like anxiety, how to cope with anxiety, what is anxiety? how to talk about anxiety, all of those kinds of things are in a session that we would do. Speaker 2 31:24 - 31:43 So we do kind of, most of our webinars are an hour long, so they're kind of, it's achievable, you know, it's a bite size. Alice also has a ton of animations and resources. Her books are fantastic. I think she's written now around about 30 books. Speaker 2 31:44 - 32:08 She started out with, Yeah, she started out with her kind of autobiography, which is a really good read for adults, particularly if you're in the early stages of finding out about autism and trying to work out, okay, am I, is my son, is my daughter, what could I find out about this? It's a really good one. But then she's also done a lot of visual guides. Speaker 2 32:09 - 32:34 So the visual guides break up different topics like sensory processing, or executive function or socializing and each book then deals with an aspect of that and there's a lot of cartoon characters or animations in those guides so it can it can make it much easier to understand for somebody for perhaps who we need to chunk up a bit of the reading and we need to we can put visuals in there as well. Speaker 1 32:35 - 32:43 Has she got anything on self-esteem because I've been speaking to a few adults at the minute that their self-esteem is like rock bottom? Oh goodness yes Speaker 2 32:43 - 33:10 I'm going to have a look at that actually. I don't remember, well I tell you what, I have done sessions on resilience and positive, oh I can't get the words out. the positive aspects of being autistic. So that one's a real positive look at it in terms of actually all those things that for many years, people have chipped away at you and told you that you're, that's wrong to do that. Speaker 2 33:10 - 33:29 And you can't be like this and you must do this and you must do that. In one hour, I kind of debunk all of that and go, you know what, you're all blooming fabulous. And there's a hell of a lot of positives that you can look at in your life, but one hour is never enough to pickle. Speaker 1 33:29 - 34:16 I was chatting to my son today because he works at Pinewood but he's on furlough and he's finding it really hard being on furlough and also working from home so he has like two team meetings on Tuesdays and Thursdays and then he does some work from home but the work that he does do he needs two laptops and it's just like oh anyway he's stressed out about it so I thought I'll give him a job to do so I thought well the garage door looks like it could do with the paint it's looking a bit it hasn't been painted for like seven years I'm sorry to say I'm terrible for stuff like that I said to him she said yeah I'm going to look it up I'm going to see how I can do it because I know that he has done some painting in the past where he helped out a chap to paint his garage Anyway, he started, I've got all the paint, went to Wicks, came back and then he rings me and he said, I've run out of paint. Speaker 1 34:16 - 34:24 I've got paint all over my hands. I don't know what to do. I'm so stressed. I wish I had started this bleeping project. Speaker 1 34:24 - 34:30 And then I said to him, I said, oh, well, because I know he's got a thing about he doesn't like paint or anything on his hands. Speaker 2 34:30 - 34:31 He has to wash it straight away. Speaker 1 34:31 - 34:36 So I said, oh, did you get any paint thinner or turpentine? I didn't get anything. I didn't know. I said, right. Speaker 1 34:37 - 35:30 Wix is just around the corner and it's just like I can hear the anxiety level going to like 65,000 and it's just like Wix is just around the corner Patrick just go around the corner buy some paint thinner see if they've got a little bit more paint that you need the primer so off he goes and then the anxiety levels are down but it started straight away I'm rubbish I can't do anything you know it's just like you have to bring them right back down so yeah he's all right now he's happier but he is finding it difficult being at home because he said i prefer to be in the workplace and he's been at home now for quite a few months and it is hard for a lot of our adults some adults prefer it they prefer to be at home but for someone like my son he prefers to be in the office to be with other people yeah and that routine and that i'm here this is what i'm doing yeah this is this is where i feel valued and it's it's okay I'm all right here and then oh no off Speaker 1 35:30 - 35:56 you go to home what yeah no this isn't fitting with me so if you don't mind um I know that you talk about specialist topics and gender identity and autism in the workplace and your eldest son is trans and you've got a lot of experience as a leader and a managing working with diverse teams if you don't mind you don't have to go there but if you feel comfortable could you talk a little bit about that particular Speaker 2 35:57 - 36:32 So I do, for Alice we have a session around gender dysphoria and gender identity and autism and the kind of links and connections with that. And I do that one because nearly two years ago my eldest came out as trans. So my eldest was born female and part of, so I never know how far to go with this because I will put the ball in here. As long as it's comfortable with you talking about it as well. Speaker 2 36:32 - 37:06 I'm perfectly comfortable but sometimes there are things that we kind of gloss over which can trigger other people. Right. So just for that trigger, my son didn't want to be alive and so took action on that at least once and that element of crisis and sadness carried on until he eventually said to us, I feel like I'm a boy. I'm not a girl. Speaker 2 37:07 - 37:12 I want to be a boy and I want to be recognised as a boy. Did you see it coming? No. Speaker 1 37:12 - 37:14 I say no, right. Speaker 2 37:15 - 37:40 Not no, not fully. There were little signs like, I say little signs, now I look back, I'm like, how naive were you Lucy? Oh my goodness. things like he would want to go shopping to clothes shop but he would always want to go to the men's section and the boys section and he'd say because I don't want like when you go into clothes shops and you go clothing shopping as a clothing shopping as Speaker 2 37:40 - 37:57 a girl all the shorts are short shorts you know they're crop top you know crop top showing all your bits showing all that you know all that kind of stuff and I thought perfectly reasonable he doesn't want to wear short shorts he wants to wear longer shorts Where did he get them? He'll get them in the men's section. Fine. Speaker 2 37:57 - 38:10 Okay. That's perfectly reasonable. Didn't think anything of it. Then he came and asked if he could wear, if he could get a binder because he didn't like his chest and his boobs. Speaker 2 38:10 - 38:42 And I said, okay. Now I was lucky enough. I was still working at the university and I had a colleague whose son is trans and he's in his 20s and he's been through a lot more than than we had and so I went to speak to my friend and she said as as a mum she was a mum she's a mum too and she said hmm binder hmm are you sure there isn't something else going on here and I said no no he just doesn't like it he just doesn't like the change in the body you know and I I put it down to Speaker 2 38:42 - 39:02 being autistic you don't like change and being the bodily changes that start happening, your hips get bigger, your boobs get bigger, all that kind of stuff happens. And I thought, this is just about change. This is just about adolescence and growing up. And my friend kind of looked at me and had that look that I would now have to other parents. Speaker 2 39:03 - 39:18 Okay, all right, I'll leave that with you. And so those were the little signs and I didn't get, I didn't catch on to them until one day he'd been to a therapy session and he came out and he went, I need to tell you something. And I said, what? And he said, I'm trans. Speaker 2 39:19 - 39:35 I want to be a boy. At which point, you're like, okay, right. But what happened after that is that the notes that we would find lying around about, I can't cope with this anymore and I don't want to be alive anymore, they all disappeared. They all stopped. Speaker 2 39:35 - 40:02 And the relief of being able to be honest and open about himself and feel who he is and who he feels he is, it's remarkable. And so we've now spent the past 18 months waiting for appointments with the gender identity service and all that kind of stuff. And that takes even longer. I am more angry about that than I am about autism diagnosis, if I'm perfectly honest. Speaker 2 40:02 - 41:12 because I think we could be waiting four years and that's four years when somebody yeah you're in crisis and and also with all the stuff that's in the news and being reported about high courts um uh and appeals and all these kind of things on court cases and things like that that mean the NHS um are less able to be helpful um in this situation so until you get to the gender identity surface you're pretty much on your own until um so is he not getting any counseling or anything we have no not in that respect no we he's he's educated through an educational health and care plan which is um through the local authority it's very bespoke and that that is all around the autism and sensory processing and anxiety and all of those kind of things Yeah, we have speech and language therapy and actually we have lucked out because we've got this amazing speech and language therapist who completely gets my son and is also she and the speech and language therapist is just so wonderful. Speaker 2 41:12 - 41:21 She's also a voice therapist for trans clients. So her specialism is voice therapy. Good. She usually does male to female. Speaker 2 41:22 - 41:48 but in in our case um we work but we go and see her because he's selected mute and so we've had to work for a year around um and some of that can be around the fact that you don't like the sound of your voice yeah maybe my voice isn't masculine enough maybe my voice sounds like a girl and so maybe i'll just not talk because then i don't need to deal with that and i haven't got to worry about that whole thing as part of my identity okay Speaker 1 41:49 - 41:55 So talk to me about, you've set up Inclusive Change, what is that? Speaker 2 41:55 - 42:00 So Inclusive Change came about because, believe it or not, I read your book Anna. How did you? Speaker 1 42:02 - 42:04 You were the one then. I was the one. Speaker 2 42:05 - 42:15 Part of it was I read your book and I thought, do you know what, if Anna can set up a school and if Anna can do all this, I'm gonna have a blooming go. And so I, I, it wasn't just that, I've been flippant, I'm sorry, but yes. Speaker 1 42:15 - 42:25 You know what, you're not the only one to say that. It's almost like I've given them that push. Yeah, yeah. To say I'm going to try it, I'm going to try it. Speaker 2 42:26 - 42:47 Well, what happened was there was a few parents locally and one in particular, a lady called Tara, Tara Northern, who we got together and we said, How can we make a difference here, right? We've got kids around the spectrum. They're really bright kids. My kids went to mainstream school until they got into secondary, at which point they broke down. Speaker 2 42:48 - 42:58 And they couldn't cope anymore. They just couldn't keep sending them to school. But they're bright. And they were in the top however many percent and all this kind of stuff. Speaker 2 42:58 - 43:24 And we said, what can we do? to help kids. How can we make a difference here? Because the educational settings locally are really telling me that, OK, well, we'll do ASDAN qualifications and life skills, whereas, you know, we wanted to be able to push kids and we wanted to be able to say, how can we allow a child to achieve their own potential in Speaker 2 43:24 - 43:41 the best way possible? What can we do about that? Regardless of their capacity, regardless of how they can, what their level is, what can we do for kids to make them thrive in the best way possible? And we looked at it and we thought, why don't we think about setting up a school? Speaker 2 43:41 - 43:51 Why don't we open a school? There's not enough settings here in the local area for SEND children. What can we do? We looked at that and then we went, oh, do you know what? Speaker 2 43:51 - 44:04 I think this is a bit more than we can cope with. We've bitten off a bit more than we can chew here. and so we said okay what else could we do? Now Tara and her husband, they run a surveying company, Quantity Surveying. Speaker 2 44:05 - 44:43 I don't know if you've met many quantity surveyors but I got a feeling there's a bit of neurodiversity in the world, put it that way. And Tara said well what about doing something around work experience, could we set up a program which was linked to work and linked to developing those skills to get young people into the workforce and helping overcome some of those barriers and challenges. Because we've seen that, we've read through the National Autistic Society, I think they had a survey out which said 16% of autistic adults are in full-time employment. Speaker 1 44:44 - 44:49 I think that's been kicking around for years. It's probably. Yes. It's out of date. Speaker 1 44:49 - 44:51 It's definitely out of date. But anyway, carry on. Speaker 2 44:52 - 45:39 Yesterday, I read an updated figure that came out yesterday that said 22% of autistic adults are in any form of employment, which is even worse in a way, because you're like, whoa, this is shocking. And so we thought, what can we do? Because I think we thought actually tackling some of the challenges of getting into the workplace and staying in the workplace really come at a much younger age in trying to overcome some of those things like self-esteem, like the anxiety, like sensory challenges, and understanding how you can overcome them as an individual, as a young person, and giving you the confidence to go, do you know what? Speaker 2 45:39 - 46:14 I can achieve anything here. I can achieve whatever anything is thrown at me. But also, employers need to also be a little bit more aware and understanding about neurodivergence and actually people who think differently because they come with a whole host of skills and Tara and Alan, Alan in particular, he really, really recognizes people who think and he used this because they did work experience with a young lad based on what we'd started out to do. Speaker 2 46:14 - 46:31 And this young man came in and he said, I want, Alan said to this young lad, I want people to think outside the box. And this lad said, why do I have to think outside the box? Why can't I just put a hole in the box and look at it from, look at the world from the inside? And he was like, I like what you're thinking. Speaker 2 46:31 - 46:40 It's different. And you're challenging the way people are thinking. So all this happened. We thought it was too difficult to run a school. Speaker 2 46:40 - 47:04 Then we thought about work experience. And this is how I came up with inclusive change, because my experience as a change manager that we talked about earlier, and my desire and my ambition around inclusivity. And everybody talks about inclusivity, and they talk about diversity in the workplace. But the one area that I think some people forget is about diversity of thought and diversity of minds. Speaker 2 47:05 - 47:18 And sometimes that can be the thing that, oh, actually, we've covered diversity in the workplace. Yeah, we've done our courses on this, that, and the other. And you go, but how many autistic people have you got in your workplace? Oh, what now? Speaker 2 47:19 - 47:32 Say what now? Yes, yes. And that's what I wanted to challenge and so I've set up Inclusive Change to hopefully make some steps into making that happen. Speaker 1 47:32 - 48:32 Great so what I want to do is I just want to share a couple of these things that you've been talking about on social media and the website so if people are listening you are going to write an article for me and we're going to share that on the charity website so if people are interested social media on twitter it's at inclusive change and facebook you've got your village shop I'll be interested in seeing what you sell in the shop and at lucysmith underscore chp capital chp www.inclusivechange.co.uk www.yourvillageshop.com www.thegirlwithacurlyhair.co.uk for transition to adulthood. So we haven't got that long to go but there's so much I want to ask you so I want to ask that question because everybody talks about children and they forget that these children grow up to be adults. Speaker 2 48:33 - 49:14 Absolutely they grow up to be adults and actually I've tried to spend the past couple of years with my own kids to prepare them for adulthood even from the age of 11. It's like at some point you're going to be 16 then you're going to be 18 and you're going to be on this and people are going to expect you to do things on your own. So even just from the age of 15 for instance if you if you're a parent and you've got your child's got an educational health and care plan from the age of 15 they could be involved in the preparation of that educational health and care plan. without you even. Speaker 2 49:14 - 50:01 That's scary to think that it doesn't happen in most cases and parents are still involved but in that last year before they leave school at the age of 16 they could be just 15 years old talking to people about what they want to achieve in the future and that's quite scary I think that that part of things for parents in the letting go and all of those kind of things can be a bit of a challenge for a parent to say oh wow wow wow I'm not sure about this I still want to be involved, and you will be, and you can be. But I think the challenges around moving from things like DLA, Disability Living Allowance, into PIP, the fears, the anxieties can overwhelm and actually be worse than the actual reality sometimes. Speaker 2 50:02 - 50:45 I think going into the workplace, the workplace is very, very different to school. And in some ways, it can actually be much better than being at school. because if you think about it you're talking about your your eldest in in in work there's less transitions there's less change and less oh let's go to this lesson and it's been this lesson and now you're in that one and now you've got to do this in the workplace it's much more rigid it can be much more rigid depending on what kind of job you're you're going for but even things like going for job interviews they're not set up for young people who are autistic they're not they're you know I think about interviews and my Speaker 2 50:45 - 51:05 interview with Alice, actually, for the job with the Curly Hair Project, I got sent the interview questions. There was no surprises. I had the interview questions before I talked to her so that both of, and she'd asked me to send my answers in beforehand so that to either of us, there weren't any surprises. And it kind of takes any anxiety away. Speaker 2 51:06 - 51:52 But it's things like coping financially, taking over your own responsibility for your own medical appointments and advocacy and all of those kind of things. And when you move into that space as an adult, people expect you to do things a lot more. And it's just, I think it's scary for parents letting go, but it's also scary for those young people. And I have known young people actually, I've worked with some schools and I remember one school in particular were talking to me about a student and they said, okay, he's in year 10, he's meant to be taking his exams next year, I think year 11, but he's already Speaker 2 51:52 - 52:06 switched off and he's stopped studying and he won't do it. And I said, have you thought that that young person is really anxious about what's going to happen when he finishes school? What's going to happen to me? Where am I going to go? Speaker 2 52:06 - 52:24 So if I don't do my exams and I fail, I might be able to stay. It's a really, really big thing for him to think about in that way. But actually, I don't want to have to face what's coming to me in a year's time. And so if I don't do it now, I'll be able to hang on in here and I won't have to cope with that change. Speaker 2 52:24 - 52:26 And change is blooming scary. Speaker 1 52:27 - 52:52 It is for a lot. And I remember when we first set up the school about maybe three, four years down the line, I spoke to a mom who said that her son was so anxious again about doing exams, didn't want to leave school, that when it was sort of September he actually bought himself a tent and pitched the tent in school. He didn't want to go but that just shows you the anxiety levels. Speaker 1 52:52 - 52:58 And the lengths that you'll go to, to cope with that. Speaker 2 52:58 - 53:36 So yeah, but things like mental health, your mental health is so fragile sometimes and being able to cope with that by yourself as an adult, when people are telling you this, oh it's stuff and nonsense, get on with it, just you know, pull yourself together, you can get out and do this. Actually no, you can't because you're probably having a shutdown or probably in a meltdown. and that's very different to the neurotypical way and it needs a lot more support and as an adult sometimes there isn't always that access to reach out for that support because you haven't got the parents, you haven't got the mentors, you know it's hard to ask for help Speaker 2 53:36 - 53:38 and know that it's going to be there for you. Speaker 1 53:39 - 54:00 So because we're in lockdown, number one, because we've only got a few minutes left, how has it impacted on your family and on your work? and number two is what do you do, because we're a show about mental health and well-being, what do you do for your own well-being and how do you recharge your own batteries, again before lockdown and after lockdown? Speaker 2 54:00 - 55:03 Okay, so before lockdown work was all about people, it was all about face-to-face, now it's all online, so many things are online, it's all about Zoom, my kids, one of them is online and homeschooled anyway, and the youngest he he's gone he went online he's just gone back to school so yay um great um so yeah it has changed quite quite radically quite massively actually and in more ways than I can even say in the next few minutes um in terms of recharging and actually um Just before lockdown I was recovering myself from not coping very well myself. I'd literally broken down and I'd had numerous therapy and I'd been to see somebody and actually she taught me and helped me realise things like concentrate on the things that you can control. Speaker 1 55:03 - 55:03 Yeah. Speaker 2 55:04 - 55:26 If you can't control it, what can you do? Okay, so think about the things that you can control. And for me, when I know I'm having those bad days, I take one day at a time and even sometimes one hour at a time. And I get through the crisis that whoever and whatever may be happening in the family or around me, I get through that and then I deal with the next thing. Speaker 2 55:27 - 55:45 And actually, I try and sometimes just the things that aren't important or not that can be dealt with later that can all go away. Mental health in our family is probably the most important thing that we have to look after and if I can get that right then everything else will fall into place. Speaker 1 55:46 - 55:51 Okay and with reference to how do you recharge your batteries what do you do? Speaker 2 55:52 - 55:59 Oh crikey, I used to love swimming, I used to love the fabulous pool nearby and I really miss going for a swim. Speaker 1 55:59 - 56:05 When do you think you'll go back for a swim again? I don't know. I think it's April. Speaker 2 56:06 - 56:09 Oh yeah, you might be right. It could be when the gym's open I think. Speaker 1 56:10 - 57:00 Yeah, but anyway, we can see a little bit of a light at the end of the tunnel, can't we? Yes, yes, but more recently I think I've fallen into box sets. just give me a bit of netflix no no no if you saw me i know you'd know um no box sets bit of netflix get on a bit of bridgerton five line i'm all over it love bridgerton yeah it's just so cheesy isn't it it's just such a lovely nice eye candy absolutely absolutely yes I am watching a bit of Netflix, it was actually Patrick who said to me get Netflix and he's the one not watching it, but I am! Speaker 2 57:00 - 57:04 I can highly recommend Firefly Lane. Speaker 1 57:04 - 57:19 I'm in the middle of census eight at the minute, it was really complicated the first few sort of three to four but I'm really into it now and it's about eight people they're at a cluster and when one of them needs help they step into each other's body it's like I can't explain it Speaker 2 57:20 - 57:21 It's really, really good. Speaker 1 57:21 - 57:27 So, yeah. So, yeah, there's so many good and the one, the chess one with that young lady, I forgot what her name is now. Speaker 2 57:27 - 57:28 Queen's Gambit. Speaker 1 57:28 - 57:28 Oh, yeah. Speaker 2 57:28 - 57:39 Loved it. I absolutely loved that. Yeah, we watched that as a family. That was, you know, every night my eldest comes in and he goes, what's Magnum worthy? Speaker 2 57:39 - 57:43 Which is his ice cream. You'll have an ice cream after tea. And you go, what's Magnum worthy? Speaker 1 57:44 - 58:49 you go right okay and that means what can I watch on the telly that's worth watching whilst I'm eating my ice cream and the Queen's Gambit was one of them yeah and I love the outfit she wore as well she's amazing yeah she is I love some of the clothing because I always like clothes and that I don't drink I don't smoke but I like clothes I've got to have one bite But I've loved talking to you and I feel like we could have been talking a lot more, we could have got through quite a lot more but just to remind people if you want to check out the website it's inclusivechange.co.uk, yourvillageshop.com, thegirlwithacurlyhair.co.uk, on social media it's at inclusivechange.co.uk, on Facebook your village shop at Lucy underscore CHP I just want to say thank you so much for chatting to me we had we've had a lot to talk about lots of things to think about and please stay safe and look after yourself I look forward to reading your article as well when it's on the charity website. Speaker 1 58:49 - 59:12 So just to remind everyone www.annakennedyonline.com. Everybody stay safe, stay strong, take it one day at a time. We will get there, not long to go now hopefully. I'm missing hugs as well from people and my friends and face to face but thank you so much Lucy for talking to me, really love chatting to you. Speaker 1 59:13 - 59:16 You're very welcome. Thank you. Thank you. All right, then. Speaker 1 59:16 - 59:18 Take care, everyone. Bye bye.