All Things Autism - Lisa Slater Jones 140222.mp3 ========================================= Speaker 2 00:02 - 00:30 Hello, this is Anna Kennedy and we're talking all things autism and I'm just back from Liverpool. It was freezing but I had a good time. I went to the National Diversity Awards and I was supporting three, two of my ambassadors and a friend of the charity. So one of my ambassadors, Wellbeing, who's also spoken on Women's Radio, Wellbeing ambassador Juliana, who looked at absolutely gorgeous in her pink sparkly dress. Speaker 2 00:30 - 00:48 She brought her son and her daughter. And then Harvey Price, who's also one of my charity ambassadors. arrived a little bit late, but Harvey, knowing Harvey, wanted to have his food in his room before he came. So off he went to the Diversity Awards, looking very, very smart. Speaker 2 00:48 - 01:10 And I'm pleased to say that Harvey was a winner and he just had the audience in the palm of his hand. He is so funny and he's so happy. to be a winner. So, yeah, he's one of the Celebrity Diversity Awards winners for the National Diversity Awards that happens every year in Liverpool. Speaker 2 01:10 - 01:21 And a friend of the charity is Alison Dornalls, who's also a finalist. I believe there was something like 52,000 entries. I couldn't believe it. 52. Speaker 2 01:21 - 01:52 How did the judges manage to sift through all of those entries? So very, very proud. of my ambassadors and also of Alison who runs Ollie and his superpowers. I received three books today called The Underdog and one of my Autism Hero winners, Chris Bonello, and also spoken at our Autism Expo, he is a writer and a speaker, formerly a primary school teacher based in Nottingham. Speaker 2 01:52 - 02:25 He's diagnosed with Asperger's syndrome as an adult and he launched Autistic Not Weird. So he's written three books which have already been hailed in The Guardian as much beloved within the neurodiversity community and beyond. So it's called Underdogs. So if you're interested, there's Underdogs, The Acceleration, Underdog, Tooth and Nail, and Underdogs, just called Underdogs, a fantastic twist on dystopia with edge of your seat thrills and unlikely heroes. Speaker 2 02:25 - 02:56 I loved it. The Acceleration and apparently one of his books was just launched worldwide on Friday. So congratulations to Chris Bonello, an amazing gentleman. Also, I'm working alongside Medical Alert, which we have for a few years off and on. Speaker 2 02:56 - 03:27 And if you're not sure what a medical alert is, it's you can get a membership for your child to protect them if they live with a medical condition or an allergy and give yourself peace of mind knowing that they are sick. for the rest of the time and peace of mind they provide can your child the confidence to be more active physically and join in socially. So family members are also benefit from knowing that their loved ones are safe. So their early start programmes provide free medical alert membership until your child is 10 years old, along with a free medical ID. Speaker 2 03:28 - 03:37 It's funded by the Lion Clubs. The scheme is currently open for applications. So if you're interested, if you Google medical alert. So why is medical alert so vital? Speaker 2 03:37 - 04:02 So medical IDs worn on pulse points can be life-saving for anyone living with medical conditions in an emergency. the rest of the time the peace of mind they provide can support confidence to be more active physically and join in socially. Friends and families can also benefit from knowing that their loved ones are safe. We first started working with medical because they didn't have that much information about autism on the website. Speaker 2 04:02 - 04:35 Autism and epilepsy, as you know, can go hand in hand. So we had a competition where we had our autistic adults and children create armbands and they were amazing. So we launched it at the Royal Fashion of London College, which was amazing. and the three winners went along and they won an award and they saw that their designs went across the UK so that was really exciting for them and also the last thing I wanted to share before I introduce my guest Lisa Slater is one third of families with Speaker 2 04:35 - 05:20 disabled children have gone into debt funding their child's education Parents of children with disabilities are spending tens of thousands of pounds or going into debt fighting for and funding services that should be provided by the government and local authority. A new survey commissioned by campaign group Let Us Learn To was headed by a friend of mine Hayley Harding. and the Disabled Children's Partnership revealed families are spending 14.6 million nationally on missing statutory support for their children. So some of the things that came out of the survey was that 4 in 10 families with disabled children have been using their savings, wiped out by the cost of fighting and paying for support services, One third of families have gone into debt paying for their child support. Speaker 2 05:20 - 05:42 36% of parents have borrowed money from family or friends to bolster the child support. Over half of families with disabled children have had to spend over £10,000 fighting to secure and pay to access basic support for their child services. 13% of families had lost between £50,000 and £100,000 and a further 13% had lost more than £100,000. I can't believe this. Speaker 2 05:42 - 06:20 Six in ten families with disabled children sought mental health support for a family member due to the stress of fighting for basic services and the last one was one third of families with disabled children said they needed essential therapies for their disabled child but they couldn't afford to pay. If you want to read more about this article please check out the charity website on our latest news page that's www.annakennedyonline.com lots of information on the charity website and resources and if you see that you might know of a resource that might be suitable or useful for a family or an adult who's autistic Please send the link to the charity website. Speaker 2 06:20 - 07:00 We'll be happy to put it on the website. So my guest today. is the lovely Lisa we've been chatting but Lisa is not feeling very well today she sadly has got Covid so welcome Lisa thank you even though you're not feeling very well so I'll just do a little bit of a background so you received your first class bachelor's degree in linguistics in 2000 and your master's degree in speech and language pathology and distinction in 2005 You've practiced speech and language therapy in a number of settings including mainstream and special schools, the North East Regional Cochlear Implant Programme, community clinics and inter-family homes. Speaker 2 07:01 - 07:14 You've also lectured at universities of Newcastle to special educational needs students. So Lisa, tell me a little bit about, before we talk about autism, before we talk about tuition language therapy, who is Lisa? Speaker 1 07:16 - 07:20 Okay, I'll try to not cough, I'll tell you that now Anna, I'll do my best. Speaker 2 07:20 - 07:24 That's okay, you can't spread your germs on the line so we're fine. Speaker 1 07:25 - 07:52 Just for the purposes of radio, no one wants to listen to that. Yes, I'm living in the North East at the moment, but I grew up in Birmingham, went to university straight from A-levels but really hated it actually. How did you? Yeah, I just, I just think I thought it was the next thing to do after A-levels but didn't quite settle into it so left after about six months. Speaker 1 07:52 - 07:58 Okay. And travelled for a year with my now-husband. Speaker 2 07:59 - 08:00 Oh, where did you go? Anywhere nice? Speaker 1 08:01 - 08:22 Yeah, we just saved really hard for a year and just bought a round-the-world ticket with loads of different stops on and didn't really have a clue what we were doing, to be honest. Which was the best place you visited? I really loved New Zealand. It was pretty special and very lush and green and interesting place. Speaker 1 08:22 - 08:25 Yeah. Oh, wow. How exciting. You're lucky. Speaker 1 08:26 - 08:37 And then? And then came back and thought, OK, better knuckle down. So went back to uni. Studied linguistics and Spanish. Speaker 1 08:38 - 08:52 OK, so what made you want to choose linguistics? Why was that? I've always had an interest in languages and then I thought, well, I don't really want to go into interpreting or anything like that. So what else could I do? Speaker 1 08:53 - 09:07 So I just remember flicking through uni perspective, so I was the first person in my family to go to uni, so it's such a new thing. And then I just came across linguistics and I thought, oh actually the study of language is really interesting. Speaker 2 09:08 - 09:10 And it really was, it was fantastic. Speaker 1 09:11 - 09:28 And then I finished that in the West Midlands and then we just travelled around different places over the next few weekends looking for somewhere to live because I knew I wanted to leave Birmingham, I wanted to live by the sea. Right. That's what I knew. Speaker 2 09:29 - 09:29 Yeah. Speaker 1 09:29 - 09:34 And we landed up in North Tyneside and I've been here ever since. Speaker 2 09:34 - 09:44 Oh, so what's in North Tyneside? I don't think I've ever been to North Tyneside, even though I'm from the North East. Are you from the North East originally? Yeah, I was born in Middlesbrough. Speaker 1 09:45 - 09:49 Oh, do you know, I could pick your accent up, but I was thinking, yeah, you're a bit further. Speaker 2 09:49 - 10:10 The thing is, because I've been living in London, I've lost a little bit of my accent, even though I'm still, you can tell, I'm from the North. But then when I go to Middlesbrough to visit my family and then I come back to see my friends up here, they go, oh, you can tell you've been, you've got a lot stronger. So, and then when I go to Middlesbrough, they say, oh, you've lost a bit of your accent. So it's just like, you can't win, really. Speaker 2 10:10 - 10:15 You can't win. So, yeah, so tie and tie. So tell me a little bit about what's there. Speaker 1 10:15 - 10:40 Oh, it's really beautiful. I had some friends in Birmingham that came from where actually I'm living now and they used to go back and visit family and they would call it the UK's best kept secret because it's the closest you can live to the beach really and afford it. It's really pretty, there's so much history all along the coast, there's castle upon castle. Speaker 2 10:41 - 10:51 Oh, it's just very laid back. Yeah, I'll have to come visit. Sounds really nice. Because when I go to Middlesbrough, I take Angela and we stay at a farm called Blackthorn. Speaker 2 10:51 - 10:58 What's it called? Blackthorn? I can't remember what it's called though. Anyway, it's sort of near where my mum lives in Great Ayrton. Speaker 2 10:59 - 11:10 And Angelo, he likes to go for walks. I'm always looking for places to go out for the day, if you like, with my mum and my sister and Angelo. So that sounds quite nice. Speaker 1 11:10 - 11:14 Well, it's not far from around there, but it'll probably take an hour in the car. Speaker 2 11:14 - 11:23 All right then, I'll have to go. You'll have to give me some tips of where to go. So carry on. So you had a little look and you decided to settle there. Speaker 2 11:23 - 11:24 And then what happened? Speaker 1 11:25 - 11:41 And then I did I was interested in speech and language therapy. I knew I wouldn't be able to do that from my undergraduate degree. So at that time, so this was in 2000, there were five places in the UK that offered the master's course. Speaker 2 11:42 - 11:42 Okay. Speaker 1 11:43 - 11:45 Luckily one of them was Newcastle where I was living anyway. Speaker 2 11:45 - 11:46 Right. Speaker 1 11:46 - 11:55 So did the master's for two years and then you come out and you're a qualified speech and language therapist. Right. And that's what I've been doing ever since then. Speaker 2 11:56 - 12:09 Okay, so when was, can you remember when was your first child or adult with, because obviously the programme's about all things autism, can you remember with an autistic child or an autistic adult? Speaker 1 12:10 - 12:34 Yeah I really can and I really, I always have a smile on my face when I think about her actually because she was absolutely amazing. So she was a little girl who was nine at the time and I was working in a school, it was a a non-maintained school, so it was a foundation, charity foundation, if that's the right word, a charity foundation. That'll do. Yeah, that'll do. Speaker 1 12:35 - 13:07 I'm sure I've got that wrong, but it was a charity. And she had just joined the school, they'd moved from down south, so she was a little bit lost anyway, like children would be, said relocated. And she used PECS, the symbol system, for communicating and a little bit of sign language because she was deaf. So my job at that time was to kind of help her settle in and help maximise how she communicated with people. Speaker 1 13:07 - 13:15 She taught me so much about autism and just, yeah, and then I was just hooked from then, really. Speaker 2 13:16 - 13:28 OK, so you have sent me some information about PACT. So what does PACT stand for? and why do you feel that it differs from other autism therapies? Speaker 1 13:29 - 14:12 Okay, so I started working, being involved in PACT, which is paediatric autism communication therapy. It was about four years ago, I saw a job advertised for a research therapist, so it was the second phase of their research at that time. and it's an evidence-based intervention, which really attracted me because, you know, you can Google lots of different therapies out there, but I think as a parent, I had my parent hat on at that time thinking, well, I'd want to know that something had been researched really well and that there was good evidence for it. Speaker 1 14:12 - 14:41 So I was attracted to that post, worked in a trial in it, and delivered a lot of that therapy over the two years. And it just really resonated with me because it's very much led by parents. So you don't go in as the expert as if you know everything about people's children, because you don't. Only the parents know about their children. Speaker 1 14:42 - 15:07 And I learned that a lot more becoming a parent then. I thought, yeah, you are the expert. But I think I don't know about your own experience, but I think sometimes parents can lose confidence in what they know about their children because there are so many experts involved, so many people brought on with an opinion on what should work, whereas PACT really is about taking back that control and saying, no, look, you're the expert. Speaker 1 15:09 - 15:50 It's a video mediated therapy, so a parent or carer plays with a child for about seven minutes, quick video, like all of the videos we've had on our phone anyway, those short little clips. And then we just look at them together and we're really focusing on the foundation of communication, the kind of base level of a pyramid, if you like, which is that social interaction, those early skills that we know can be tricky for children with autism. Is it sort of like play therapy or not? Yeah, you could you could categorise it in that. Speaker 1 15:52 - 16:09 It's a way of bringing it back to basics where you're, it's very bespoke. That's what I like about it. So we're really looking at what makes that child, not every child with autism, because why should they be the same? What makes that child tick? Speaker 1 16:09 - 16:42 What do they like to do? how do they communicate best when you're playing with them and I guess for a lot of the parents I was working with over the years, understandably they'd become their child's teacher in a way because they had to, they had to pick up things that were happening at school, they wanted to obviously help their child improve skills in areas but just those basics of just being with a child and not having to think hard about what you're teaching them. Speaker 2 16:43 - 17:23 Yeah, because I remember when my sons were first diagnosed and obviously it's a huge, huge learning process and especially when you don't know anything about it or you might not have even heard of autism. Some parents haven't, you know, when this very first started because obviously I'm talking about quite a while ago now because my sons are like 32, 29. So I remember looking and trying to find out and there were so many different ways of working with children and you know various different therapies and and then I just think well how do I know which one's going to work for my And that's the nightmare that I think a lot of parents had at that time and probably still have now. Speaker 2 17:24 - 18:10 And I'm just thinking, well, Patrick and Angelo are so different from each other, you know, Patrick's quite verbal, you know, he's got high levels of anxiety sometimes depending on what's happening, but very, very articulate, very, very clever and like really, really loves to be quite particular when he talks about things, he doesn't like things to be airy-fairy. Angelo's got minimal conversation, very echolalic, and I'm thinking they're all, they're both so different from each other, I don't know which one to choose. So I think that's what the dilemma is for parents as well, and then obviously you've got parents, no disrespect, that are looking for the holy grail, you know they want their kids to be cured, and it's just, it's just every parent is coming from a different angle. Speaker 2 18:10 - 18:54 a lot of pressure involved and sometimes it can be from extended family as well when their kids are a little bit more articulate and they you know they might think oh there's nothing wrong with them you know it's just that um you're being a little bit um over protective or whatever it is that there's all of these different angles that have been fired at parents and then obviously you go into these meetings and meeting with this professional meeting with that person and everyone's got a different opinion and then that's I think that's the dilemma for parents so obviously this is something um different um so can you so for someone listening in I'm just thinking of a parent now where their child's just been recently diagnosed and they think oh what can I try best you know and Speaker 1 18:55 - 19:53 what age can you start this at and you talk through the process so say for example right i'm interested so i'm looking on your website what do i have to do okay so um based on the research based on what we know was effective and and just to add here it was long-term effect as well because i think it's very easy to be um seduced by therapies that offer the world yeah and that impact might be there, but then it might only last two years and you think, well, what now? Okay, they've reached a certain point, they can maybe form some phrases, but it isn't budging still. So what I like about PACT, and by the way, I do lots of other therapies, it's not just PACT, but what I like particularly about it is that the research showed that even six years after the end of the treatment, Those gains kept on going, so that momentum Speaker 1 19:53 - 20:08 kept on going. Okay, so how young can you start? Age 2 up until 10 our research was on. Because we know now that more and more places are starting to look at early diagnosis pathways. Speaker 2 20:09 - 20:23 Yeah, well, for me, for all those years ago, all the books I was being kept talking about early intervention is crucial. But then, as I've said many, many times, I was just so frustrated to think, well, where is it? Yeah, I'll find it at that time. So it's obviously a lot of parents struggle now. Speaker 2 20:23 - 20:41 But you can imagine in 1997, 1998, there was it was a lot harder, a lot less available. So again, so they look on the website and they say, right, so is this something that has to be funded by the local authority or can parents fund it themselves? How does it work? Speaker 1 20:41 - 21:16 Well, it depends where you live unfortunately. So Impact are the company that are rolling out PACT and they have been very successful in getting NHS into the NHS pathway but not everywhere for now. So there is the option to pay for it privately, which there's therapists all over the UK now. And I could give you the website where parents could go on and they could put in their postcode and see who's around. Speaker 2 21:16 - 21:42 Yeah you can do that because I just want to interject sorry just to say that people listening in that Lisa is going to write an article for the charity website which will be up just to remind you www.annakennedyonline.com so the links that she talks about within the chat will be on that article and any other useful links that Lisa feels that help you so just don't worry about running for a pen or whatever it will be on the charity website. Speaker 1 21:42 - 22:22 Yeah so to answer your question kind of what would happen So if parents opt to go ahead, so let's say they're living in an area where it's offered through the NHS, which is our ultimate goal to get it nationwide. They would have a initial chat with the therapist so they'd come to their home. It's been proven as most effective into children's homes because we know that's where they're in their comfort zone. I love it when I can work into parents' homes because that's where, A, the child's more comfortable, and B, it's just a little bit more personal, isn't it? Speaker 1 22:23 - 22:40 I know I've got a child with ADHD. He's just, well, I say he has, he's on the diagnosis pathway at the moment, but I'm pretty certain. And I know sometimes the hassle of getting to an appointment and how sometimes you're stressed before you even get there. Speaker 2 22:40 - 22:43 try to get them there or get them out of the car. Speaker 1 22:44 - 23:03 And by the time you walk through the door and wait for a clinic and then you're having to wait, you know, you are, yeah, you're in a hiding to nothing by that point. So working into homes is, yeah, luxurious, I'd say. So the therapists would explain all about PACT. It's been evidenced on 12 sessions. Speaker 1 23:03 - 23:10 So once a fortnight, which takes it up to six months or so, you know, depending on holidays, etc. Speaker 2 23:10 - 23:11 Okay. Speaker 1 23:12 - 23:29 And the therapist would take a very short six, seven minute clip of the parent and the child playing, which of course feels weird at first. You don't want the camera being pointed at them, but... Is there a specific thing that you ask them to do or just... No, just play. Speaker 1 23:30 - 23:30 Just play. Speaker 2 23:31 - 23:33 All right, okay, just do your own thing. Speaker 1 23:33 - 23:46 Yeah, yeah. We've got some toys that we bring along which purely because it's their novel. You know how kids love other people's toys. So we bring them along just for something for the child to show some interest in. Speaker 1 23:47 - 24:12 And then we ask the parent to give the child something that will entertain them for about 40 minutes, let's say. So that could be, you know, playing with the iPad, watching telly, having a snack or whatever. And then we would spend some time chatting about that play video. But the key is, it's not at all the therapist saying, this is what I think needs to happen. Speaker 1 24:12 - 24:43 It's us watching it and the power of watching it back is pretty amazing. So there's tiny, tiny things that children with autism, their communication can be so subtle and so slight that it's always easy to miss. So watching it back on video just gives us the opportunity to watch it and say, well, you know the way he slightly glanced to the left there, what do you think he did that for? Now, I don't know the answer to that, only mum would know the answer to that. Speaker 1 24:44 - 24:57 And then we talk about that and then we think, okay, so if that means that, how can we budge that forward a little bit or how can we slightly nudge that as a goal? So the parent sets the goals as we go along. Speaker 2 24:57 - 25:09 Okay, so can you remember, an example of something, just so it's a little bit more tangible, so you've got a parent, so something that you can remember that's happened and then how did it progress? Speaker 1 25:09 - 25:38 Yeah I can actually, the first little boy that I worked with, so mum was really struggling and she was really open with me when I first went along and she said I feel like we can't go anywhere, I feel like we're indoors all the time because this little boy gets quite distressed when we go outside. even can't kind of go for a little walk around the block. So obviously a goal for us was to think about just a very short walk around the block. Speaker 1 25:39 - 25:56 And we spent the 12 weeks really looking at this little boy's communication and looking at the environment around him. And it's a very, very non-judgmental therapy. It's saying, look, do you know what? We're all just doing our best here. Speaker 1 25:56 - 26:07 Let's try and work it out together. It's not saying anyone is doing anything wrong. It's saying, look how many amazing things you're doing and where you are now. Let's just see if there's any slight things we can do. Speaker 1 26:09 - 26:28 So what we discovered, and was a massive change for mum, was that there was maybe a little bit too much language going on. Now that sounds a little bit odd to say, doesn't it? it was that mum was doing such an amazing job at trying to calm down the little boy when they went out. Speaker 2 26:29 - 26:29 Yeah. Speaker 1 26:29 - 26:32 That it was a bit of an overload for him in a way. Yeah. Speaker 2 26:32 - 26:48 Yeah. A little bit more concise rather than overboard. Because I know sometimes I can tell with Angelo, obviously he's got minimal verbal skills, if it's too much chat for him, it's just, you just lose him. It's just, you just got to keep to the point or whatever it is that we're doing at the time. Speaker 2 26:49 - 26:54 So clear and concise instructions sometimes, which really helps him. Speaker 1 26:54 - 26:55 Really, you notice that, do you? Speaker 2 26:56 - 26:58 Yeah, yeah, just it's not too much overload. Speaker 1 26:59 - 27:23 Because I think, you know, processing language is very different for autistic children. So, you know, this little boy is desperately trying to process all of this language because he wants to, because he loves his mum. But it just, with that, with the wind and the noise and the feeling of outdoor shoes, which weren't very comfy. So we looked at everything, all of those things together. Speaker 1 27:23 - 27:36 And after the time we'd finished, they were able to go for a tiny little walk, even if it was 100 yards and back. And then we just built on it over time, thinking about the communication. Speaker 2 27:36 - 27:38 Small steps. Speaker 1 27:40 - 28:03 Yeah, so that was really powerful for mum. And we saw her confidence grow because all I was doing was pointing out the amazing things she was doing anyway and saying, look what you're doing that, do more of that. And then she thought, actually, yeah, I am doing this. So by the end of it, she was telling me what she needs to think about. Speaker 2 28:04 - 28:16 With reference to PACT, you're saying talking about, I was just thinking out loud here, so you're saying they're doing it at home, but what if parents don't want to do it at home and they want to do it at school? Can you do it at school or play a group? Speaker 1 28:18 - 29:04 Yeah, I mean we haven't got the evidence for that yet, which is why we'd always encourage it to be at home. So I guess the power of it being at home, Anna, is that it's a parent or a carer involved. um whereas at school um you know you might have a special support assistant or a learning assistant who knows the child well but nothing like mom or dad yeah um so yes yes it can be done but we haven't got the evidence for that yet okay so can you you talk about how long do you have to do this because you're talking about from age two to ten so it's something where they only get a certain amount of weeks so say for example that you know local authorities Speaker 2 29:04 - 29:16 when you go for speech and language therapy, they say you can have six sessions. Yeah. How many sessions can you have? And if the local authority won't pay for more, can you extra out of your own pocket if you need to? Speaker 1 29:16 - 29:22 Yeah, of course. So PACT is based on 12 sessions. So once a fortnight for six months. Speaker 2 29:23 - 29:23 Right. Speaker 1 29:24 - 29:49 And that's what we know shows positive effects. And parents then are asked to do roughly 20 to 30 minutes of practice every day, but we're building that into everyday life, you know, in the bath, at bedtime. You know, we're not saying doing anything amazing, we are having to take time out of your busy day anyway. So yeah, that's what is recommended. Speaker 1 29:49 - 30:00 But say the local authority can only fund half of that, then yes, of course, there can be private therapists that could top that up in a way. Speaker 2 30:01 - 30:04 So is this just for autism or can it be for any other disability? Speaker 1 30:05 - 30:29 It's been evidenced on children with autism but what we're learning over time is that it can be effective for children with other communication difficulties and it can be effective for children who haven't yet got a diagnosis but maybe mum or dad are thinking we do think it's autism but we haven't yet got a diagnosis. Speaker 2 30:29 - 30:35 And so who's part of the team then? So who is PACT? So where are you based? How many speech and language therapists? Speaker 2 30:36 - 30:38 Who's the team? And who's the founder? Speaker 1 30:38 - 30:56 So the founder is Catherine Aldred, A-L-D-R-E-D. And she's pretty amazing. So she originally created PACT as part of her, I believe it was her PhD project actually. And it's just grown since then. Speaker 1 30:56 - 31:16 And she's grown it as a company. And people, so speech and language therapists or psychologists can train on PACT. And then once you've trained, you can become a trainer with further training. And it's based down in Manchester. Speaker 1 31:16 - 31:37 So in Manchester, it's offered within the local care pathway, which is fantastic. In Wales, there's been, there's quite a big project where it's, in the local care pathway. We've got a lot of international therapists now who are taking it worldwide. So that's exciting. Speaker 2 31:38 - 31:38 Spreading out then. Speaker 1 31:39 - 31:39 Yeah. Speaker 2 31:40 - 31:41 Oh, that's good stuff. So who else is on the team? Speaker 1 31:44 - 31:46 In terms of other disciplines or? Speaker 2 31:46 - 31:57 Just with part of who is PACT. So, you know, obviously Catherine is the person who's the founder. So is the team growing or you just got a small cohort or how does it work? Speaker 1 31:58 - 32:27 Jonathan Green, Professor Jonathan Green, he works with Catherine in terms of building the research projects around that. And there's, in terms of the actual, the base of PACT, there's an admin team around that, but then we're spread all around as PACT associates in a way. So we work into different areas around the UK, but we always have meetings on, through technology such as this. Speaker 2 32:28 - 33:02 Okay so I've seen that you've got an autism care pathway webinar and it's in empowering autistic children and their families it's Tuesday the 26th of April at 12 30 to 3 30. You can register online and tickets are free to this webinar so it starts at 12 30 finishes at 3 30 and it's got welcome by Catherine Aldred then you've got Professor Jonathan Green the new autism care pathway benefit to services and families PACT, Implementation in Practice, Helen Harpen, Warwickshire UK. Parent Experience, Louisa Harrison. Speaker 2 33:02 - 33:34 Adult Champion, Amanda Haycock. And then Question and Answers, so it finishes at 3.30. So if you're interested, that link as well will be on the charity website. If you want to follow PACT, I can see they're on Instagram, so that's pact underscore autism so i'll just say that again on instagram at pact underscore autism and then on facebook i can see it's at pact capital p-a-c-t international so that's at pact International so that is Speaker 2 33:34 - 33:51 free Tuesday the 26th of April from 12.30 to 3.30 and that link will be on the charity website. So I can see in 2020 that you delivered a psychoeducation parent group as part of a randomised control, what does that mean? Speaker 1 33:52 - 34:46 Yeah so that was a research project actually based within the same place I worked with PACT And it was called managing repetitive behaviors. And I was, you know, let's say for example, you know, if you have a drug trial and you have a placebo drug, and then you'll have the actual drug. So when you're doing randomized research, that's where people are put either in the placebo group or the therapy group, but they don't know in a sense, until they sign up which group they're going to be in. So I was a therapist on the placebo group where we ran, they were still useful but they weren't the therapy as such, where we ran education groups for parents who had just had their diagnosis. Speaker 1 34:47 - 34:53 So that feeling like you said where you have the diagnosis and you think what next? Speaker 2 34:55 - 35:07 Okay so there are new projects that you've got coming up that you're excited about obviously you're talking about these spreading out towards overseas now but is there anything else in the pipeline? Speaker 1 35:09 - 35:24 Well for PACT we're just working really hard to get it into local pathways that's the ideal whilst you know there's a lot of us offering it privately we want to get it into the NHS so that's what we're all busy working hard on doing Speaker 2 35:25 - 35:28 So the NHS, whereabouts is it on offer at the moment? Speaker 1 35:30 - 35:53 So in Manchester, in Greater Manchester, in Warwickshire, so you know you mentioned Helen Harbin earlier, she has worked really hard in Warwickshire getting it rolled out. Okay. There's a really successful project in Wales where they've managed to roll it out and you know what, there will be other places in the UK that slip my mind now. Okay. Speaker 2 35:53 - 35:56 But is it on the website then if people want to? Speaker 1 35:56 - 36:08 Yes, I believe it is. And there's also on there a PACT location so you could type in your postcode and it will tell you therapists in your area for private. Yeah. Speaker 2 36:08 - 36:15 Yeah. So you talk to me a little bit about the other therapies that you do out of interest and be interested to hear what you do. What else do you do? Speaker 1 36:15 - 36:28 Yeah. So when I was working on the PACT research, the second phase of it, coronavirus hit. So we're talking two summers ago now, aren't we, or something? Speaker 2 36:28 - 36:33 I lose track, Anna. Yeah, yeah, you're right, two summers ago. Speaker 1 36:33 - 36:42 And so once that project ended, I didn't have a job because, understandably, a lot of the NHS funding was going towards frontline staff. Speaker 2 36:43 - 36:43 Yeah. Speaker 1 36:44 - 37:00 So I thought, oh, what am I going to do? Got really panicked. And there were some short-term contracts being offered, but I'm talking six month or one year contracts. So I just thought, well, I'm going to land up in the same position in six months time, looking for a job. Speaker 1 37:00 - 37:17 So a family approached me and asked me, did I want to work privately with them? I felt a bit wobbly about it, to be honest. Well, I don't know. I think it's, I'm just, I've always worked in the NHS and that's what I love doing. Speaker 1 37:18 - 37:26 So I just felt wobbly about it thinking, oh, I don't know. I just I wanted to be free to everyone. And it's expensive. I mean, look at those stats you were saying earlier. Speaker 2 37:26 - 37:29 Yeah. But isn't it give you a little bit more freedom to do what you want to do? Speaker 1 37:30 - 37:40 It does. It does. But my heart's always in the NHS. I've been doing that now for 18 months and I really love it. Speaker 1 37:40 - 37:57 And I see that, you know, whilst there's so many fantastic things going on in the NHS, there is also a need. for parents who maybe aren't getting what they feel their child needs from the NHS. So that's what I've been doing. Speaker 2 37:57 - 38:00 Is there a group of you that are doing that or is it just something you've done on your own? Speaker 1 38:02 - 38:23 I'm working independently. I've also recently just started working for a diagnosis team, a company called Neurospectrum and that's a chap who is really wanting to make autism diagnosis and ADH diagnosis a bit more affordable because it's expensive isn't it? Speaker 2 38:23 - 38:37 It is expensive and what's the wait times like where you're where you're living because obviously I've heard it's sort of between two and five years if you're lucky you get it under a year so what how long do people have to wait in the area that you live? Speaker 1 38:37 - 38:39 Do you know I've got to say it's nearly three years. Speaker 2 38:40 - 38:40 Oh my god. Speaker 1 38:40 - 38:44 I know. It's not fair is it? It's just not fair. Speaker 2 38:44 - 38:46 I just can't wrap my head around it and I really can't Speaker 1 38:46 - 39:18 Yeah and it just has an impact on the whole family. Well of course it does and the company that I just started working for, the chap who runs it also works for the NHS, he works privately and for the NHS and he just said he's seen children come through on his books where he'd met them four years ago initially and now they're coming back round for a diagnosis to him privately because they can't They're waiting too long on the NHS, so it's just really sad. Speaker 2 39:18 - 39:36 And what I've had as well is that some families that have contacted me, again a postcode lottery saying, oh the local authority won't accept a private diagnosis. And the thing is, they have to. It's a funny one, isn't it? It is definitely a funny one. Speaker 1 39:36 - 40:04 Let's talk about Covid and how... Can I just give a little a little tip for that Anna? Because I had that recently myself where I was talking to a mum in a school playground and she said that friend of a friend her child's school wouldn't accept the private diagnosis so the way around it was that they went to their local CAMHS service and almost had to get it rubber stamped. Speaker 1 40:06 - 40:20 So basically CAMHS looked at this diagnosis and saw that it was from, of course, a reputable company. You know, people aren't going to be given out diagnosis, you know, immorally, are they? So, yeah, that's the way around it, if anyone ever is having that issue. Speaker 2 40:21 - 40:33 Yeah. OK, thank you for that. So talking about COVID, how do you think it's impacted on families? Because we're all about, this programme's all about well-being as well and looking after your mental health. Speaker 2 40:33 - 40:48 Obviously it's affected and we did chat briefly before you came on. about how it has affected a lot of families and individuals. So what have you seen and what tips and advice can you give to people to help them? Because obviously people are still wary. Speaker 2 40:48 - 41:05 I know they're saying you know it's becoming an endemic now and we're coming out of it. There's a lot of families, a lot of individuals and I know one in particular that hasn't been out of the house for nearly two years because they just stopped the whole thing. So what have you seen and what tips and advice could you offer? Speaker 1 41:05 - 41:40 Yeah, it's so tricky and it affects everybody in different ways. Yeah, we spoke a little earlier, someone was talking about health anxiety, it was your producer wasn't it, and you know health anxiety hits us all, it can hit children. One example is that my son um, who's eight, he developed very, very severe stammer just as a result of, um, COVID. And I know that, I know that it was because of that, because it was almost 10 days after lockdown where he suddenly, he couldn't go to school. Speaker 1 41:40 - 41:54 Um, he was having to be at home. I was stressed out cause I was working online because my job still continued. Um, I was having to get used to new systems. My husband was stressed out because his business was struggling. Speaker 1 41:54 - 42:03 Yeah, he developed this stammer because of it. Yeah, so it really does. Sorry, say that again. How's it getting on now? Speaker 1 42:04 - 42:21 It's still there. We just kind of have learned to manage it, I guess. But yeah, it's a real effect of it. And I do see, I see the negative effects in families where, like you said, people getting more frightened to leave the house. Speaker 1 42:22 - 42:45 So children being off school, and that lack of routine. It's so important. As much as sometimes we all think, oh, I'd like to get away from routine, we all actually need it. I've also seen some families where it's been a positive thing, COVID, where the demands of school have been so great that actually being at home has been better. Speaker 2 42:45 - 43:17 Have you come across that? definitely yeah I have spoken to some families and some autistic adults where they've had to work from home rather than going to the workplace where with my son Patrick he's so glad he's gone back to work last week although saying that he said he found it a bit stressful as in because getting used to the um the day the length of the day um the work that he's doing He says, for him, home is home, work is work. He said, and they even offered, do you want to work a couple of days from home and then come to the office? Speaker 2 43:17 - 43:36 He said, no, I want to, I know I'm finding it a bit difficult at the minute and I'm a bit restless, but I just need to get back into the routine of being in the office. So yeah, so he prefers being in the office where, I suppose, some others where it's really worked well because they haven't got the pressures of getting on the train, getting on the bus, that lava, being in an open air office or whatever it is that they work. Speaker 1 43:37 - 44:02 Yeah, all of those demands that, you know, for some people they stack up and they become too much. I don't work with adults, I work with children and, you know, there were many families that even though it pulled the rug out from underneath them, coronavirus, all of a sudden we had to quickly change. They found their child was much calmer when they were at home. So that's, you know, interesting, it's both sides. Speaker 1 44:03 - 44:31 And then in terms of tips and advice, one of the things that I learned with my mom hat on, not to put pressure on yourself with the schoolwork that you have to do from home. We don't have to do that at the moment, do we? But, you know, we don't know whether that will, I don't think we're going to go into a lockdown, but I don't, we might have to have school learning. So for example, you mentioned I've got COVID now and my son looks like he's developing it. Speaker 1 44:31 - 44:55 So I know he's going to be sent home week's worth of schoolwork, this time around I'm going to take it really laid back. First time around I thought right we must do this, if we don't do it he's going to be in trouble, and we all became stressed out. So just to make sure everyone's happy rather than having to stick to things that other people are telling you you've got to do. Speaker 2 44:56 - 45:28 Yeah, I think the other thing is with our kids as well, specifically as well kids on the spectrum, they're so in tune with the way we feel, even though we try not to show our anxieties, because obviously everyone was anxious about it, we've never been through anything like that before, you know, and the rules are constantly changing and the communication wasn't that good. And even like when you were not, say for example, with Angelo walking, you know, the benches weren't available to sit and have a snack at anymore and all these different changes and people wearing masks, what's that all about? You know, so yeah, there was too many changes. Speaker 2 45:28 - 45:47 So hopefully now things are settling back, fingers crossed, hopefully. Yes. How do you look after your own well-being? Again, because we're a show about promoting mental health and well-being, and also it's Children's Mental Health Week this week, so what do you do to look after your own well-being? Speaker 2 45:47 - 45:48 What sort of things do you do? Speaker 1 45:52 - 46:19 If I'm in the house and I'm thinking, right, I'm not being productive here and I'm slipping, You know, you start to feel that you're, um, yeah, you're starting to feel a bit stressed out. I first of all, just put my trainers on and I think, right, I'm getting out. I say to my son, come on, let's just go for a little walk. And I think even seeing the sky and being outside, um, you know, whether that's just a little walk around the block or somewhere more open, that always really helps me. Speaker 1 46:19 - 46:30 Yeah. Um, being amongst nature really helps me just the smells of the trees, the, You don't have to live somewhere beautiful to be able to access a park. You can go anywhere, can't you? Speaker 2 46:30 - 46:33 Are you a tree hugger? Oh, I am a bit. I am a bit. Speaker 1 46:34 - 46:36 I've never actually done that. What's it like? Speaker 2 46:38 - 46:40 What do you do? Do you just walk up to a tree and give it a hug? Speaker 1 46:41 - 46:42 I just lean on it, Anna. Speaker 2 46:42 - 46:43 All right. Speaker 1 46:45 - 47:02 Does your son do it as well? Yeah, he loves being amongst nature, so being in kind of a forest or being down at the beach. We're lucky we live by the beach. I know not everyone lives by the beach, but there's always parks around, aren't there, where you have that bit of open space? Speaker 2 47:02 - 47:03 Yeah. Speaker 1 47:03 - 47:31 So I do that, and then if I'm in the house and I can't do anything like that, I do something small and manageable for 15 minutes. Okay. So I think to myself, I think right. music, I'll like listen to some favourite tunes, I'll put a podcast on, I'll do something that is going to make me feel better at the end of that 15 minutes and then I have the headspace to readjust and think what I need to do. Speaker 2 47:32 - 47:49 So did you find it, because this is something else I've spoken to a lot of people and even my PA Lisa, it affected their sleep, the whole lockdown thing. She said before she was a great sleeper and now for the past two years her sleep pattern has just gone out the window. Has it affected your sleep pattern? Speaker 1 47:50 - 48:17 I do remember it affecting the sleep pattern when I was working from home 100% yeah. It all became so fluid time and especially when my son was at home too because his routine had gone out the window, mine had gone out the window, so I'd started working sometimes at 6pm when I'd done tea time. And then I'd find myself sometimes, you know, once I'd put him to bed half ten and I'm still working. Speaker 2 48:18 - 48:18 Yeah. Speaker 1 48:18 - 48:24 But that was just to fit in with the demands of what was happening at that time. So, yeah, I do remember that. Speaker 2 48:24 - 48:30 Yeah. And all the days sort of seemed to roll into one, didn't they? And then you sort of were thinking, what day is it today? Yeah. Speaker 2 48:30 - 48:36 Yeah. Is it the weekend? Can I relax now? So are you back to normal, whatever that is now? Speaker 2 48:36 - 48:49 So are you back to doing, obviously you've got COVID at the minute, which is tough for you, but I'm saying, are you back to doing what you're doing and going to visit people at home? Or is it still not quite like that yet? Speaker 1 48:49 - 49:10 It's a mixture. So if I work in two schools, I just go by their own rules. So some schools are not so keen on external visitors coming in. or some schools I'd say you know as long as you can prove you don't have Covid or you've been vaccinated that's fine. Speaker 1 49:11 - 49:17 Some people I'm doing home visits for or some people they're just opting for virtual therapy. Speaker 2 49:17 - 49:21 Okay got you. So you used to work with deaf children for many years? Speaker 1 49:21 - 49:22 Yeah. Speaker 2 49:24 - 49:34 So is there a different way of working? Obviously you know I can understand that they're deaf but I'm just saying with reference to PACT is there a different process you've got to follow? Speaker 1 49:37 - 49:51 When I worked with deaf children, I worked in, actually from your neck of the woods, in James Cook Hospital. Oh. Yeah, in the cochlear implant program. So for some children, depending on their level of deafness, they can, have you ever seen anybody with a cochlear implant? Speaker 1 49:51 - 49:54 It's like a surgically implanted device. Speaker 2 49:54 - 49:56 I've seen it on TV, not actually seen it. Speaker 1 49:56 - 50:00 an individual. Yeah the awareness is getting out there isn't it a little bit more about. Speaker 2 50:00 - 50:09 Yeah and even on Facebook they sort of keep popping up as well in the feed sort of feed area where you see a child that's had an implant then they can hear for the first time. Speaker 1 50:09 - 50:51 Yeah I mean it's pretty amazing the world we're living with technology and that's all it is it's just technology. Yeah. So when I was working there I worked there for five years and that was about teaching so once I'd had their surgery the surgeons would always joke that they'd done the plumbing, the audiologists would do the wiring, so they would be adjusting the levels all of the time, and then I used to do the rehab after, so basically it's like teaching children how to listen, alerting them to different sounds, because they don't know what a sound even is, they don't know to turn to a sound, they don't know that a sound's not scary. Speaker 2 50:52 - 50:54 So yeah, it was very, very different. Speaker 1 50:54 - 51:13 It was working on of basic listening skills, but if I was working with children who didn't have a cochlear implant, it was on their language development or maybe they wanted to work on their speech, it was a great range of totally different needs. Speaker 2 51:13 - 51:31 Yeah, because I remember both my boys, they had gluia and at first which I've spoken to many parents that they think that they might be deaf or they have partial deafness but obviously it wasn't that it was gluey but taking them into the booth that you go into used to be quite stressful. Speaker 1 51:32 - 51:35 Oh yes I know so stressful. Speaker 2 51:35 - 52:14 Yeah so that I know I remember that period it was thought we did that for about a couple of years but once they had the grommets fitted and one of them fell out so we had to have it refitted again but that made a big difference So I just wanted to remind people about the autumn care pathway that is going to be held so it's free as well so that's on Tuesday the 26th of April just in case you missed it first time around at 12.30 to 3.30 So it's tickets, there is no charge for this, it's a webinar and it's 12.30 to 3.30. You've got the welcome by Catherine Aldred, who's the founder and she's a consultant, speech and language therapist and the director of impact. Speaker 2 52:14 - 52:54 And there's Professor Jonathan Green, the new autism care pathway benefit to services and family. You've got PACT implementation in practice, Helen Harbin of Warwickshire, adult champion, Amanda Haddock. parent experience Louisa Harrison and I believe there's a PACT video to watch as well and then there's question and answers. If you want to follow them on Instagram it's at PACT underscore autism spelled P A C T and then at it sorry at PACT capital letters international on Facebook so if you're interested book your slot online that sounds very very interesting. Speaker 2 52:54 - 53:07 Is there anything else that you would like to share we've still got a few minutes Parents have just got their son or their daughter diagnosed or their loved one, any tips and advice as well in hindsight? Speaker 1 53:08 - 53:26 Yeah, really good question. I would say find your tribe. I think everyone loves to give, everybody loves to give parents advice, don't they? Even when you have even when you have your own baby, everyone says, oh, they're too hot. Speaker 1 53:26 - 53:35 They're too cold. Put a hat on them. Oh, you should let them have fresh air. Everyone loves to give an opinion and they're only, it's coming from a kind place, but yes, I'd say choose your tribe. Speaker 1 53:36 - 54:03 Try to find some websites that you trust and that you enjoy being on and just stick with those. Like say for example, the national autistic society website is amazing. Because if you try to Google too much, you just end up in a Google spiral. Try to find people that you can reach out to when it's the middle of the night and you're upset about something. Speaker 1 54:05 - 54:36 We've all had those moments, don't we, where you wake up worried about something or your child's not sleeping very well and you feel like you're at the end of your tether. Have someone that you can text and say, are you up? I'm having a real nightmare. look into different therapies if that's what you're wanting to go down if you think that your child would benefit from speech and language therapy you know look at places where there's some research behind it i think that's really important is there evidence to say that this is going Speaker 1 54:36 - 54:54 to work with facebook now ana there's a wealth of people out there that can have had that lived experience you know they've maybe done a therapy that they've liked or maybe that hasn't suited them you know get that information but know look after yourselves as well in the middle of it all. Speaker 2 54:54 - 55:27 Yeah Facebook is quite good as in I think for families because it's almost like a virtual autism community on there so if you're um like I don't know everything so if somebody asks me a question and I don't know what the answer is if I put on my Facebook page hey everyone I've just been asked this question you know if the person doesn't want to give me their name or whatever it is that's fine um can you help me um do you know this or do you know where they can find this or is there a place that does this And then everyone comes on board and says, oh, let them try this, that and the other. Or there's a parent that says, oh, that person can talk to me. Speaker 2 55:27 - 55:43 I don't mind chatting with them. So Facebook is fantastic for that. And it's also, I know Twitter sometimes can be a toxic place, but it can also be a very positive place. I've had a parent where, you know, especially during lockdown, they couldn't get a particular brand of something. Speaker 2 55:43 - 56:16 Or, you know, when everyone was buying pasta and toilet rolls. Oh gosh, that seems like so long ago, doesn't it? I know, like in all the, stuff was just flying off the shelves they couldn't get this or McDonald's was closed and you couldn't get chicken nuggets because it's a fact a lot of kids on the spectrum love chicken nuggets and then I found out apparently that Quorn chicken nuggets taste very similar so this parent actually asked McDonald's if they could have some of their packaging so they gave them it and they stuffed it nuggets inside so they thought they were having chicken nuggets from McDonald's but they were actually corn ones. Speaker 2 56:16 - 56:30 So there you go, there's a tip. What a lovely story. Yeah and there was another one where a parent was trying to find their son or their daughter only drank from a Tommy Tippy cup that was a certain colour and it was a certain brand, it was out of stock or it was out of date or whatever it was. Speaker 2 56:31 - 56:54 The amount of hundreds of thousands of social media tweets that went and in the end I think they got about 10. So do you know what? people are fantastic and I think that's what people found as well during lockdown. It's the community spirit that like rallying round together and I think the less people have sometimes, those are the people that are more giving. Speaker 2 56:54 - 56:56 Do you find things like that happening? Speaker 1 56:56 - 57:11 Oh definitely, definitely. I remember when it was, you know, it all felt so strange and new, didn't it, when we first had the lockdown? And I just remember even on our street, people were knocking on each other's doors saying, does anyone need any eggs? Yeah. Speaker 1 57:12 - 57:27 Has anyone got enough bread? Because I think we really were all reminded then of, you know, people who are vulnerable and, you know, we didn't want our elderly neighbours to be going out in the shops, so people who were fitter and stronger. they would get stuff. So yeah, definitely. Speaker 1 57:27 - 57:38 And I really agree with you about Facebook. And what I like about Facebook is that it can be at the time that you need it. So if it's 10 o'clock at night and you're not ringing anyone to wake them up, are you? Speaker 2 57:38 - 57:49 You're just saying anyone out there for a... Yeah, or sending a message or messenger or it's just this, it can do so much on there. I know the law, the law, what's it? The algorithms have changed a little bit. Speaker 2 57:49 - 58:32 So people are not as in contact, as in you can't reach out as far if you like, but it's, it's still very very good. I just also wanted to remind people about Autumn's Got Talent so if you know somebody that's a singer or a dancer, a musician, a magician who plays acoustic instruments or whatever their talent is we want to see it because the closing date is the end of April. We've had quite a few already from across the UK and overseas so if you know of anyone that they would like to send in their entry please check out the charity website once again www.annakennedyonline.com. There's the events page and you can see where you can send in your entries so that's for Autism's Got Talent. Speaker 2 58:32 - 59:09 We're also going to be sharing information very soon for our Autism Expo which will be happening at Brunel University and that's on June the 25th. So Brunel University, lots of free parking there, it's a lovely venue. Carrie Grant has agreed to speak for us and we've got Brian Bird who's also one of the past speakers on Women's Radio Station, and Gemma, I've forgotten her second name, it scares me at the minute, but she's also another person, so yep, and there'll be stands there, it's only £10 for the day, so come along, you can network, have a coffee, have a cake, so lots going on, so keep checking the websites, we've got the newsletter as well that you want to register for free. Speaker 2 59:09 - 59:21 I just want to say thank you so much Lisa and I hope that you're going to feel better very soon. I shall. Yeah and I hope your son is not going to be too poorly with it if you think he's got it. Speaker 1 59:21 - 59:24 Oh thanks honey, it's been a pleasure, I've enjoyed talking to you. Speaker 2 59:24 - 59:42 Oh thank you so much. So again don't forget it's at PACT Autism on Instagram and at PACT. International on Facebook and they've got their Autism Care Pathway webinar which will happen on Tuesday the 26th of April. So thanks everyone, keep safe, keep going one day at a time. Speaker 2 59:42 - 59:46 I think we're nearly there, I'm not sure but I'm sure we will be very soon. Speaker 1 59:46 - 59:47 Bye!