All Things Autism – He’s Not Naughty

All Things Autism - He's not Naughty.mp3 ========================================= Speaker 3 00:01 - 00:12 Hello this is Anna Kennedy at Women's Radio Station talking all things autism voice of women worldwide and my guest today is Debra Brownson MBE. Hello Debra. Hello. And how are you? Speaker 3 00:13 - 00:19 I'm really well thank you. And you've traveled all the way from? From the Lake District. Wow and you've come all the way to London from the Lake District. Speaker 3 00:19 - 00:21 That's somewhere that I'd like to go that I've never been. Speaker 12 00:21 - 00:23 Have you never been? No. It's beautiful. Oh is it? Speaker 12 00:23 - 00:28 Absolutely beautiful. So maybe yeah maybe next year. But it is out of the way. Speaker 3 00:28 - 00:56 Okay, so we're going to be talking about He's Not Naughty and I have a copy of your book. I'm just going to read the back page if that's alright with you. It says, fed up of everyone not understanding her friend Jake, Taryn candidly explains her simplistic understanding of autism. Although created for children of all ages and ability, this is also a quick and fun way of explaining to family and friends why children with autism behave the way they do. Speaker 3 00:56 - 01:12 Coupled within the distinctive talent of illustrator Ben Mason, this book provides a unique visual representation of what it's truly like to have autism. I love just all the designs in this book. It's just really lovely. So why did you create He's Not Naughty? Speaker 3 01:12 - 01:15 I probably can guess, but let our viewers hear why. Speaker 12 01:15 - 01:41 Well, it's the title that many parents identify with because when you have an autistic child and you send them to school, If a teacher doesn't understand autism, they will think that they're naughty. So it's something that a lot of parents come up against and we were no different. We sent our beautiful, bright, bubbly, four-year-old child to school. It was a small village school, so it wasn't a case of him having to get used to lots of children. Speaker 12 01:41 - 02:00 There were three children in his year. So we thought it was going to be the perfect start for our son. Unfortunately, that didn't happen and he was treated every day like he was the naughty child. Even my friend's children were going home and telling their parents, oh, Jake was naughty again today. Speaker 12 02:00 - 02:31 And quite often he wasn't naughty, he was just struggling in a sensory environment, he was overwhelmed. and instead of being treated like the child who had a disability, recognised diagnosis of autism, he was treated like he was the naughty child in the class and it slowly chipped away at his confidence, his trust and we got to the point where my bubbly, energetic child nearly had a breakdown. Speaker 3 02:31 - 02:41 And how old was Jake when he got diagnosed? Four. And what's the services like in the area where you live with reference to diagnosis? Because some parents can wait up to five years for a diagnosis. Speaker 12 02:41 - 02:52 We didn't wait that long. I believe it's got up to that level now. This was, you know, my son's 12 now, so eight years ago. It was pretty tough to stick at the process. Speaker 12 02:53 - 03:17 It's a very long daunting process, form-filling meetings, constantly trying to persuade people that your child's autistic when you knew from day one they were. But we followed that route because we thought as soon as we got to the point where we got a diagnosis we'd get loads of help. That's the pitfall that parents fall through, it's just like oh we've got diagnosis now so where's all the support? Yeah and it didn't exist. Speaker 12 03:17 - 03:55 Okay so what happened? So we thought right this is it we're going to get help now we've waited you know all this time it was two years with Jake start to finish and they just said oh I'm sorry there isn't any help in this area so we were just left with the diagnosis and a child who was behaving in a way that we didn't know why he was behaving that way we didn't know how to help him school didn't want him there the way they were treating him was damaging him So it all came to a head when he had been unable to get changed after PE. Speaker 12 03:57 - 04:26 He'd had a meltdown because it's an unstructured part of the day, there's children running around, it was just so scary for him, he couldn't cope. And he'd been unable to get changed, and he'd rang my husband and said, you know, he won't get changed again. And my husband went to his classroom and found him in his underpants with nothing else on, crying into a beanbag, rocking, while everybody else was making fun and laughing at him. And he swooped him up. Speaker 12 04:28 - 04:59 So my husband went into the classroom, swooped him up, collected all his stuff and he's never been back since. We just thought, there's no way on earth we're sending him again for another minute into a place that doesn't understand his needs. They were damaging and we thought that, you know, these professional people pay to care for him, pay to educate him. were going to do the best for him, and because they didn't understand how his autism presented, they treated him in a way that damaged his mental health. Speaker 3 05:00 - 05:01 So where is your son now? Speaker 12 05:01 - 05:09 He had five months at home with me, and during that time we realised that he was teachable, we'd been told previously he wouldn't be, he was unteachable. Speaker 3 05:09 - 05:18 I've heard that so many times! Yeah, we had a young man in an assembly who was told he was unteachable and he left the school with GCSEs, so it's just like... Speaker 12 05:18 - 06:00 Yeah, well we were told he was unteachable in a mainstream setting because his sensory needs were too high for any school to be able to cope with them because of the funding budgets and things like that. So he had five months at home with me where I obviously had to give up my job as a solicitor to be there for him and we realised he could learn, he was really clever, but he just couldn't get over the sensory boundaries that our school environment was placing on him. I was then asked to try another school because I was determined by that point that no one was ever going to do anything again to hurt him so we'd sort of resigned ourselves to the fact that he was at home with us forever. Speaker 12 06:00 - 06:35 But then someone said to me social isolation isn't a cure for social isolation and it really hit me and I thought how's he ever going to integrate into the world if I just keep him cooped up and wrapped up in a house and he was happy and learning. but he was never going to then progress to where he could be a productive member of society if I kept him cooped up indoors and wouldn't let him near anybody who was mean to him. So they asked me to come up around this school and it was the strategic resource for autism in our area, mainstream. but they cater for five sort of high-functioning children per year. Speaker 12 06:36 - 06:53 He went there and it was another world. Yeah, so geared up for him. I dropped him off and it was on an island near where we live because we live on the coast and I thought I'm not leaving the island because I'll get called back in 10 minutes because that was my day. I would spend day forward and back all day. Speaker 13 06:53 - 06:54 I can totally relate to that. Speaker 12 06:54 - 07:03 All day. So I didn't leave the island and I'm sat there thinking, oh, it's an hour's gone now. No, it's lunchtime. And I spent the whole day just sat waiting for the call and nothing. Speaker 12 07:04 - 07:20 And that has been the way it's been ever since. And that's brilliant news. It's an amazing, amazing school. full of people who fully understand what autism is, sensory rooms, quiet classrooms, quiet eating rooms, PE halls that have soundproofing so it doesn't echo. Speaker 12 07:22 - 07:40 And it was just day and night and he started to be happy again, he made friends, he was learning and he left school with all his SATs, passed every single SAT. And now he's in a mainstream school, age expected levels for everything. So he's got a brother? He has a brother, an older brother, who's 16, who's also on the spectrum. Speaker 12 07:40 - 08:11 And when did he get diagnosed? He was probably about seven. And he doesn't have any sensory issues though and he's never needed a teaching assistant or a statementer or an EHCP. He just struggles socially and he has struggled learning because obviously you have to adapt your learning style to children on the spectrum and he was at a school where they didn't really do that but Josh could cope just with help from us and nice teachers. Speaker 3 08:11 - 08:30 Our kids can cope in mainstream, if they've got the right support in place, but some children just need a specialist provision, smaller class sizes, speech and language, OT, whatever it is, obviously, that they need to help them get through the day. So, you got an MBE, what was that for? Speaker 12 08:30 - 08:39 It was for my outstanding contribution to global autism awareness. That was just March this year. So how was that for you? It was wonderful. Speaker 12 08:39 - 08:52 I took both the boys. So it was a bit of a daunting task taking two autistic children to Buckingham Palace, but I thought if I'm going, they're going. So they were great actually. I contacted them before and explained I'm bringing two autistic children. Speaker 12 08:52 - 08:58 They described fully the day that Did you go morning or afternoon? Speaker 3 08:58 - 08:58 Morning. Speaker 12 08:58 - 09:21 And they explained the whole process so I could warn them, because there's obviously armed guards there and there's Czechs and Gurkhas with swords and things. But yeah, my son, they both manage really well, there's a lot of waiting around. There is a lot of waiting around. But yeah, my son was fascinated because the Queen had gold fire extinguishers, so he was telling everybody that was his day. Speaker 12 09:22 - 09:40 And my eldest son was more probably more excited with the fact that Wiley was there. He's a grime artist. So yeah, it was a wonderful day. Full of inspirational people and stories and it really spurred me on really to carry on with what I've been doing for the last 15 or so years. Speaker 3 09:40 - 09:48 So I'm looking at your work so far. So you're an author. So He's Not Naughty, which is the book that you, a copy you've given to me. Thank you very much. Speaker 3 09:48 - 09:56 So a children's guide to autism. So if people wanted to buy it, where can they get it from? From my website, which is heisnotnaughty.co.uk. Speaker 12 09:57 - 10:05 I'm on social media as well, so you can find me. So if you want to find me on social media... Same hashtag, heisnotnaughty, Twitter, Instagram, Facebook. Speaker 3 10:05 - 10:13 Okay, you were also an Autumn Ambassador for Virgin Atlantic Airway from March 2015, so what happened there? Speaker 12 10:13 - 10:31 I was contacted by the accessibility manager. One of her friends had read the book and she asked me if I'd like to be involved. So basically I went along to Crawley, they've got a base there. It's fantastic, they've got like a mock-up, playing a mock-up checking desk. Speaker 12 10:31 - 10:47 So if your autistic child has never flown before or is scared of flying you can go along, book an appointment. sit in a natural seat, put the seatbelt on, practice the check-in desk. It's a really helpful facility, but I don't think it's very well known. Speaker 3 10:47 - 10:49 They don't signpost these things very well, do they? Speaker 12 10:49 - 11:03 No, I think it might be because if they do, they get an overwhelming reaction and they're probably not geared up for the amount of people who might want to use it. But for those people who really want to take the family on holiday, Speaker 3 11:03 - 11:16 it is a useful thing to know. Okay, so we're going to be talking a little bit more about some of the other roles that you've got. You've got Parent Representative for the All-Parliamentary Group for Autism, 2015 to present. I have been to a couple of those meetings. Speaker 3 11:16 - 11:41 Sometimes I'm not sure if they're like a tick box exercise, does anything actually happen from those meetings? But yeah, Yeah, we can talk a little bit more about that in the second half. So if you're interested in talking to someone from our charity, it's www.annakennedyonline.com. If you'd like to speak to someone or you'd like to speak to me, if you can ring our charity helpline, which is 01895 540187. Speaker 3 11:43 - 12:02 I'm on the lookout for Autumn's Got Talent performers, so if you're interested, the closing date is December the 31st, so if you're a singer, a dancer, a magician, a comedian, whatever it is, whatever floats your boat, check out the website and the closing date is December the 31st and then we'll announce the performers in January. 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Speaker 5 14:40 - 14:58 Women's Radio Station is a not-for-profit community interest company. Supporting women is our passion. We're currently welcoming donations to help towards our running costs to keep this important initiative alive. To donate, simply head to our website. Speaker 5 14:58 - 15:00 Every little will help. Speaker 3 15:02 - 15:31 This is Anna Kennedy at Women's Radio Station Voice of Women Worldwide and we're talking all things autism and my guest today is Deborah Brownson MBE. So Deborah, I understand that you're an NHS governor in Cumbria where you live. I am, yeah. and I saw something that popped up on social media I think it was a couple of days ago now and it was the Department of Health guidance for NHS staff dealing with autistic patients and it's UK wide and I'm thinking why isn't that been shared and why is Speaker 3 15:31 - 15:39 it just like popping up now because I've never seen it before so what can you answer that what can you answer with that? Speaker 12 15:39 - 16:19 I can't explain why it's not more understood and spread, but I think the things in it are really helpful for anybody who works in the NHS, who deals with, I mean it can be from the porter to the reception staff to consultants. But did you discover it by accident? I was sent it through my work in the NHS, but I thought it was It was so timely, one of the things specifically relates to understanding behaviour and seeing it as being autistic behaviour rather than challenging behaviour, which is obviously close to my heart at the minute because I've been working closely with a friend of mine called Paul and you have too, Paul McGowan. Speaker 3 16:19 - 16:45 I'm just going to say that's how we met because of Paula and then Paula was one of my special recognition achievement winners at the Hero Awards. So I'm thinking she's fighting for NHS mandatory training and I'm thinking well that's already in place so why hasn't it been shared? So can you read a few things off it that I feel that people maybe should know about? So it's an infographic, you can find it on social media, on the Department of Health. Speaker 12 16:45 - 17:03 One of them is explain at every stage what you are about to do, what will happen next and why. So that's really important. Give the person enough time to understand the information you are sharing and wait a few seconds for a response. That's obviously because of the delayed processing that most people on the spectrum have. Speaker 12 17:04 - 17:31 Using clear and direct language. again, maybe even using pictures where necessary. The one that's particularly poignant to me is always consider the person's behaviour in terms of his or her autism even if it becomes challenging. Because I think there's a tendency with doctors, GPs, consultants, if they come across someone who's overwhelmed and behaving aggressively, I think there's a bit of a tendency to throw antipsychotic medication at patients. Speaker 12 17:31 - 17:53 Most definitely. And in a lot of those cases, this person's just overwhelmed and it's a part of their autism. And if you use reasonable adjustments, then those behaviours will decline. So yeah, I shared it because obviously with the campaign that Paul is doing, these are little things that everybody who works in the NHS should know. Speaker 12 17:53 - 18:09 should be sharing and should be putting into practice. So just remind us where we can find that again? If you go to the Department of Health, you should be able to find it on their website but if not you can look at my social media links on yours and it will be on there. Speaker 3 18:09 - 18:23 I've also interviewed you with a couple of your colleagues, which is going to be coming out a little bit later. So we'll just talk a little briefly about it. It's the autism plan. So can you tell the viewers, the viewers or even the listeners a little bit about the autism plan? Speaker 12 18:24 - 19:00 Well it was, we've decided to come up with a platform, a support platform because when you get the diagnosis you don't get any help and we feel like it's a bit of a travesty that you're told something that's life changing and then you're not actually given any practical advice or guidance as to how to live a happy and healthy life with autism. So that's the aim of what we're trying to do really. So it provides online courses that are instantly downloadable so the minute you get the diagnosis you can go home, download it or even if you just think your child might be autistic and we can also put you in contact with consultants as well, one-to-one consultants who have experience Speaker 12 19:00 - 19:07 in helping autism families sort of navigate the obstacles that you know you might find in your way. So it's going to be launching very soon. Speaker 3 19:07 - 19:16 So if people are interested, where would they find this information? What's the website? There's two websites. So the course website is the autismplan.co.uk. Speaker 3 19:16 - 19:18 OK, and you can go your own pace doing the course? Speaker 12 19:18 - 19:30 You can do it. When you download it, everything gets downloaded. But if you want to do one module a month, you can do that. If you want to do it all in one night, I don't think I'll have enough hours, but it's quite packed, full of everything. Speaker 12 19:30 - 19:42 Obviously the title is Everything We Wish We'd Known, and it's basically just that. When our children were diagnosed, if someone would have just sat us down and shared those things with us, our lives would have been a lot easier. Speaker 3 19:42 - 19:58 I remember when Patrick and Angelo were diagnosed and I was reading all the various different strategies of working with children with autism and I just thought, how do I know which one to choose? Patrick and Angelo are so different from each other. How do I know which one's going to be, you know, the best for them? It's going to work for them? Speaker 3 19:58 - 20:15 And that's the dilemma that you have because obviously you're told first of all that your child's been diagnosed autistic. You've got to get your head around that. You know, you're also a wife, you're a mother, you know, you're going to work, trying to keep the house together and all the rest of it. And then you think, right, so if it's not working in the school that they're at, where do they go? Speaker 3 20:16 - 20:26 So there's nobody to sit down with you yet again and say, there's these schools available. They just say, go and visit schools. So that's what you do. And then I suppose by visiting schools, you see what's out there. Speaker 3 20:27 - 20:59 I'm very much went with my gut instinct as well, because obviously, I don't know, my gut instinct has always really served me well. So I went to a few schools, and I remember I went to one where mainstream children came in the front door, children who were autistic came in the back door, and I thought, no, I definitely don't want to be coming here. There was another school that I went to where children were just walking round and round and round in the playground, not playing with anyone, just looked totally lost, and they said they were very inclusive, and I thought, No, that's not for me either. So in the end, the school that I really did find that was going to be, there just wasn't any places. Speaker 3 20:59 - 21:14 It was just a waiting list and they said, if you don't even live in the area, don't even bother to put your name on the waiting list. So hence why we set up our own school. So that's not for everyone to do. It's quite a daunting process and it just like consumes your whole life. Speaker 3 21:14 - 21:19 But anyway, I'm glad that we did do it because who knows what would have happened to Patrick and Angelo. Speaker 12 21:19 - 21:40 Well, that's very similar to my story in that The people didn't understand Jake. I thought I'm gonna write everything down in a book that I need. Anybody else I leave him with, I want to be confident that they understand why he behaves the way he does, how to help him. And then when an educational psychologist saw it, she said, you know, this wouldn't just help Jake, this would help lots of other children. Speaker 12 21:40 - 21:48 So that's how it comes to be published. And it's also how the autism plan came to be born because, again, there wasn't that help there. Speaker 3 21:48 - 22:00 So we, like you did, want to provide it because it doesn't exist. Okay, I'm just looking down your list again. So, what did you think of the A Word, the BBC A Word? I did go to the premiere of both of them. Speaker 3 22:00 - 22:17 I thought it was pretty good, but a lot of parents, some of them didn't quite like it because they said it just showed someone that was quite able and they'd never sent them to show children and adults that are quite severely autistic, that have, you know, non-verbal, that have got, you know, difficulties. What did you think? Speaker 12 22:18 - 22:39 Well I helped out advising on both series and I got to meet Pete Bowker who was the writer. He was a teaching assistant in a specialist setting so he has a lot of experience with autistic children in his previous life. And I asked him that question and that question came up. I think I went to the ones in Cumbria and you probably came to the London one. Speaker 12 22:39 - 23:07 But in the question and answer sessions that I were in, that question came up every single time. And he had a very good answer for that. And it was that in his experience, the children who were further down the spectrum, it was more obvious to the public that they had a disability or a condition and they were a lot more tolerant and a lot more helpful to the parents. And they wanted to highlight that yes, a child can be autistic, who also is as functioning as the boy in the series. Speaker 12 23:07 - 23:16 Just to highlight that there is a spectrum. And I thought that was quite clever. And also, they had to get a child to be that character. Speaker 3 23:16 - 23:25 Yeah, there was a quite a few parents were saying, Oh, why didn't they use an actor that was autistic? Why did they use someone that wasn't? But I thought he did a really good job. Yeah, well, I mean, he wasn't an actor before. Speaker 12 23:25 - 23:41 This was his first ever role. And he wasn't autistic. But again, Pete Barker had a a reason for that and he said that it was unfair for someone at the age of five who's autistic to have to recreate a meltdown. He thought that was unfair and too much and I do agree with him. Speaker 12 23:41 - 24:09 But they are trying to commission a further series which will be further down the line and they are looking to use autistic actors and in the second series there were quite a few autistic actors. So it was something that was considered and in my mind I think they did get it right. The only complaint I had in the first series was the boy was often seen wandering off in the morning on his own. If my son was out of my sight for longer than 30 seconds I would be ringing the police. Speaker 3 24:09 - 24:11 Yeah because he'd be walking down this big sort of Speaker 12 24:11 - 24:31 yeah on his own before school yeah the second series if you notice yeah he was always being followed yeah so they did listen but I think on the whole to get autism presented in a mainstream TV show that everybody watched not just people who are with you know autism families I think that's that's Those are the type of things that will make autism more mainstream. Speaker 3 24:31 - 24:40 Yeah, I think if it gets you talking about autism, it's worth doing. No matter whether you get a backlash or you don't. I always look on social media to see what the backlash is. And you're never going to please everyone. Speaker 3 24:41 - 24:56 Everyone's got their own ideas. But I think if it gets people talking about it, the public, it's worth doing. So I spoke to Morven as well, who played the mom, and I said to her, you know, how did you prepare for the role? And she said some of her friends have got kids who are on the autism spectrum. Speaker 3 24:56 - 25:06 So she spoke to them. And then that's how I met Casey as well. Casey Ainsworth is one of our ambassadors whose son is on the spectrum. So, yeah, so I thought they did a good job. Speaker 3 25:06 - 25:07 It's difficult. You're not going to please everyone, are you? Speaker 12 25:07 - 25:30 You're not, because obviously the autistic spectrum is so wide. However you see autism, like in your child or the child that you know it's never going to be the same as you know how they would portray it on TV so there's always going to be varying opinions but on the whole I think they did a really good job and like you say getting these sort of topics on mainstream TV that can only be a good thing. Speaker 3 25:30 - 25:46 We touched briefly in the first half about you being a parent representative at the All-Parliamentary Group on Autism. What's your opinion of going to these meetings? Do you think it's a tick-box exercise? Do you think anything actually valuable comes from these meetings? Speaker 12 25:46 - 26:19 Well, I can only talk in the ones that I've been involved with and the thing that I was really passionate about was getting it to be compulsory that all teachers in teacher training college have autism training and we did manage to achieve that. And that should have been coming in in teacher training colleges from September, the academic year September 2018 to 19. So have you checked that to see if it's happening? I try my best and I keep going along but yeah I've got a lot of faith in the chair Dame Cheryl Gillan. Speaker 3 26:19 - 26:21 OK. Yeah, she's actually... She's amazing. Yeah, she is. Speaker 3 26:21 - 26:28 It's the team together. I don't know. It's very difficult. It's a really difficult process, but I'd rather be involved than not. Speaker 3 26:28 - 26:47 OK. Well, we can talk about lots of different things to do with autism because we're very passionate, but I'd like to thank you for coming along to Women's Radio Station. Again, if you're feeling isolated, you need to talk to someone, please check out Anna Kennedy Online, which is a national charity. It's www.annakennedyonline.com. Speaker 3 26:47 - 26:59 If you ring the office 01895 540187, I can speak to Lisa, my PA, and I can give you a call back. So thank you again. And we're on Women's Radio Station. Speaker 5 26:59 - 27:09 Welcome to Women's Radio Station, the voice of women worldwide. Hungry? An average woman eats about two to three kilos of lipstick in her lifetime. Speaker 13 27:09 - 27:12 Women's Radio Station. We want to hear from you. Speaker 2 27:12 - 27:17 This is Women's Radio Station. You're listening to Avril Price with Kitchen Sink Spirituality. Speaker 3 27:17 - 27:22 It's Anna Kennedy talking all things autism and my guest today is Karen Nunn. 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