All Things Autism - Brian Bird 310122.mp3 ========================================= Speaker 2 00:00 - 00:17 Hello, this is Anna Kennedy. We're talking all things autism and it's a chilly day today. I'm sitting here with my coat on because I'm so cold I can't seem to get warm. However, I just spoke to my mum who lives in the North East and she said it's so cold there and I can just remember how cold it was when I used to live there. Speaker 2 00:17 - 00:35 So, last week, I've been very, very busy as always, doing Zoom meetings, starting now to go out to meet people, so that's good, which I prefer. Celebrating as well my mum's birthday, it was my mum and dad's anniversary. 63 years of marriage. Wow. Speaker 2 00:36 - 00:48 And my youngest son's birthday, Angelo, who was 29. I can't believe he's 29. Where has all this time gone? So just a few bits before I introduce my guest, Brian Bird. Speaker 2 00:48 - 01:00 So I've been sent in a book called Chatterbox, and it's My Life With Autism, A Mother and Son's Perspective by Martin Slims. Oh, how do I pronounce that? Flinstad. I hope I've pronounced it correctly. Speaker 2 01:01 - 01:23 So the world has become more aware and informed about the increasing number of autism diagnosed in society. It's still a mystery as to the hardships and solutions to the lives of these children and young adults as they move on in life and find their way in this world. This book is a picture of one such life an autism adult and his mother as they navigate forward down the road. So it's about Martin. Speaker 2 01:24 - 01:45 He's a passionate sports fan and has his soccer coaching license through the US Soccer. He's been on the local news for the work he does as a behavior therapist. Currently he's the executive coordinator at CSD, an autism company located in the Silicon Valley. He's also studying to be a speech pathologist On his days off, he attends sports events and golf when he can. Speaker 2 01:45 - 02:14 With his dad, he currently resides in San Jose, California. So if you're interested in looking at this book, it's called Chatterbox, My Life with Autism, A Mother and Son's Perspective. And one of my charity champions, Beverly, she actually does book reviews. So if you're interested in your book being reviewed on the charity website, please contact the charity at www.annakennedyonline.com and we can do a review of your book. Speaker 2 02:14 - 03:18 Just to remind you, Oldsom's Got Talent, we are still looking for performers, so whether you're a singer or a dancer, or you play an instrument, whether you're a band, whether you're an individual, whether you're a poet, whether you're an artist, please send in your entries to, again, www.annakennedyonline.com. AnnaKennedyOnline.com and it all closes, the nominations, the end of April so you've still got plenty of time and our show will be our 11th year, I cannot believe it, 11 years that we'll be at the Mermaid Theatre in October. If you want to add any really useful resources to our charity resources page again contact the charity and we'll have a look at it and if we feel it's appropriate for the charity website we will share the link there. Lots of useful resources on there and also to remind you that we are now preparing for our expo which will be online and at Brunel University and that will be on the 25th of June so more information will be shared about that very very soon. Speaker 2 03:18 - 03:56 I also just wanted to remind you about our Together We Are A Community survey. So we have launched the Awesome and Cultural Issues campaign, Together We Are A Community, and throughout the years I have spoken to so many families who are experiencing cultural stigmatisation. And this is unnecessary family pressure and an additional strain placed on parents that is unjustified and unfair. So if you're interested in filling out one of our surveys, please again, everything's on the charity website on the latest news or it's on our cultural issues autism page. Speaker 2 03:56 - 04:43 So my guest today is Brian and I meet so many interesting people across social media and this is another of my interesting guests that I've met. So I met Brian on Instagram quite a few weeks ago now if I remember correctly And Brian was diagnosed late as an autistic man which was in 2011 with Asperger's Syndrome. He's a father and carer to two fantastic young men on the spectrum and he's passionate about autism and helping others. He took part in the research side and experiments and filming of the television documentary Living with Autism, a BBC Horizon production that featured Professor Uta Frith and was aired on TV, I think it was about eight years ago if I remember correctly. Speaker 2 04:44 - 04:46 So welcome Brian, thank you for joining me today. Speaker 1 04:47 - 04:51 Thank you very much. It's a pleasure to finally chat to you. Speaker 2 04:52 - 05:02 Oh, thank you so much. Professor Uta Frith, what an amazing woman she is. I met her when I very first started the school, oh, about 22 years ago. She doesn't live that far away from me. Speaker 2 05:03 - 05:20 Yeah, she came along and we've met quite a few times. She also officially opened a college that I opened, which Angelo attends now. Yeah, wonderful lady. I always remember I was telling her about everything that I do, and she was asking me about time out. Speaker 2 05:21 - 05:39 Sadly, at that time, I didn't have very much time out going on at all because I was just so focused on everything that had been set up, looking after the boys. and then when I was telling her about the washing and everything that I do she was shocked that I didn't have a dryer and she kept pestering me saying, Anna have you bought that dryer yet? Speaker 1 05:40 - 05:57 NEIL Yes a fantastic lady and very pro‑autistic people and supportive of the community and I learnt a lot talking to Uta Fritz and she encouraged me actually to write my autobiography and to start becoming an autistic advocate. Speaker 2 05:58 - 06:10 Wow. So Brian, before we talk about autism, just tell me a little bit about, if I was to say, who is Brian, tell me, who are you, Brian? A little bit about your background, something that you feel comfortable sharing. Speaker 1 06:11 - 06:26 Well, first and foremost, it's a good question, actually. I like to think I was born to be a father and carer. I used to run my own business many years ago, and I had to give that up due to ill health. And when my youngest was diagnosed with autism, he was very different in those days. Speaker 1 06:27 - 06:38 And when I became a carer, I entered that sort of world. And I've always loved being a father. And I think that's, you know, first and foremost, that's what I'm about. That's what I live for. Speaker 1 06:39 - 06:56 just having the responsibility of two sons, I didn't have a good father myself, and that's kind of my life really, everything revolves around my boys and also my work as well in regards to autism, so fundamentally that's who I am I think. Speaker 2 06:56 - 06:59 So what did you used to do before you talked about you had a business or what did you do? Speaker 1 06:59 - 07:28 Yeah, for many years, almost 30 years, I ran a landscape gardening business and we did crop maintenance. I employed a few people. and I did that for many years and I used to like being outside, it was quite a good career for me at the beginning because I wasn't so good socially, there's limited contact with people, it worked out very well. But as I matured and got older, I kind of liked meeting people more, then it became more of a problem I think. Speaker 1 07:28 - 07:37 I loved doing it but I stopped because of an accident at work, and ill health and everything fell down and I went into a different world of being a carer. Speaker 2 07:39 - 08:11 DEBRA My son tried the world of gardening for about a year and a half, he gave it a good go but he said mum it's not for him and for him it was the sensory difficulties he was having, He was working at Pinewood and now he's got a different job which he absolutely loves. He said he didn't like the bushes prickling him, it was all to do with sensory issues, the cold and the hot and he just found all of that quite difficult to deal with. But he gave it a good go for 18 months so I'm proud of him for that. Speaker 2 08:11 - 08:34 I spoke to him and he told him about the difficulties that he was having and it was affecting his well-being so they decided to try him with another job which he absolutely loves. They're a great company. Can we talk a little bit about your childhood if you don't mind? You spoke about bullying, trauma, making friends and what was school like for you as well? Speaker 1 08:35 - 08:52 Well, to put it as politely as I can, my childhood was an absolute nightmare. You know, we're going back to the 60s now, my father was a psychiatrist actually, funny enough, but he rejected me straight away, I just wasn't the son he wanted. Speaker 2 08:52 - 08:53 DEBRA Oh no. Speaker 1 08:54 - 09:34 NEIL Yeah, then at school I just couldn't fit in and I couldn't, to educate me was impossible, a lot of my childhood I was mute anyhow, And I found out later I'm dyslexic as well, because back in those days I had no idea I was autistic, and I had a feeling it was a very difficult difference. and not knowing why. And of course, kids in those days, they pick on vulnerability, they could see that I was different, unable to mix in, and I had a very rough time, it must be about ten years of just bullying every day basically, teachers as well. Speaker 1 09:35 - 10:15 We're talking about different times, some of it goes on nowadays as well, but it was just a child who was, just wouldn't fit in. There was even talk about institutionalising me, placing me in a special unit because I just didn't communicate, I didn't make eye contact, and all those things in those days were considered, you know, very bad. So, I have an older sister, but I come from a broken home, and we've been separated many years, lost contact. But, yeah, as I said, it's a very broken home. Speaker 1 10:15 - 10:29 I went through family divorces, things like that. My mother died when I was 11. And really, my main inspiration, my main saviour was my grandfather, actually. He was a very sort of warm, loving figure. Speaker 1 10:29 - 11:04 and he helped me in many ways, I think. So, that was a very bad childhood, became a vandal, a bit of a street kid, and I think my behaviour was a result of not getting the attention I needed as a kid, not succeeding in school. I mean, I educated myself later in life, but it took years to undo that damage, and of course all the time I was believing there was something wrong with me, And, you know, that impacts in your mental health in the end. All these sorts of things, really, quality of life. Speaker 2 11:05 - 11:41 Oh, I'm so sorry to hear that, but it sounds like you really sort of worked on yourself and pushed yourself forward, even though having a difficult childhood. You know what, I've spoken to so many autistic adults with a similar story to yourself, where one of my ambassadors, you remind me of, Ben, who very much, your story sounds like his, and now he's an entrepreneur and has his own company, and he's just got married, so he's really pushed himself forward. if, do you mind talking about, if you don't mind, about your mental health challenges? Speaker 1 11:41 - 11:54 NEIL Not at all, I talk about these things freely actually because there's so much stigma attached to mental health and I think we do need to be able to talk about these things the same way we talk about physical illness and things like that. Speaker 2 11:54 - 11:56 DEB I agree, I agree. Speaker 1 11:56 - 12:01 NEIL So you can ask any question you like then. Speaker 2 12:02 - 12:23 do you so with reference to your mental health did you get any support at all while when you were at school or as a teenager or as an adult and what was the processes like for you and also one other thing if you could make a change to help other individuals um what type of things do you think should be in place Speaker 1 12:24 - 12:41 Well, of course, at school, I was always, what's in the sort of year before, they always held me back. But really, I just, the school education person just went over my head. I currented, so I got no support. And it was often safe for me to stay outside of school because of the bullying. Speaker 1 12:41 - 13:06 So I was a regular truant, unfortunately. I didn't get the support I needed as a kid, so therefore we had an adult who had all sorts of problems derived from trauma and going through a system which didn't cater to people like this. So that impacted greatly on mental health. In terms of anxiety as well, I had I'm diagnosed with general anxiety disorder. Speaker 1 13:07 - 13:20 I've always suffered tremendously from anxiety, but I didn't know I had anxiety. That's the funny thing. And of course, the trauma builds over the years, and it led to bouts of depression. The hospital thought, I've got nothing to be depressed about. Speaker 1 13:20 - 13:43 I'm happy in some ways, but in other ways, I guess it was just trauma manifesting. So as I say, I do come from bleak times. and I hope at times have changed now. But, you know, trauma does lead adults to become traumatized and everything that goes with it and comorbid conditions. Speaker 1 13:44 - 13:57 So it was a constant fight to sort of get over the childhood, which I did. I think I had all sorts of therapies. I've had range from group therapy, CBT, psychotherapy. That was a disaster for me. Speaker 1 13:59 - 14:10 There was a time when I was late. I was about 20. I think my father died. I was admitted to the mortuary psychiatry unit there as a voluntary patient. Speaker 1 14:11 - 14:30 Now, in those days, 1980, it was, you know, depression. That's how it was dealt with. I had to go through I think about nine months in that hospital. That was quite an experience being in a mental institute and having to walk in there when they said you can come here, and I had to walk there in my little suitcase down that corridor. Speaker 1 14:31 - 14:44 I never assumed I'd come out alive. In those days, I thought that was the end of my life. It was actually a very positive experience. I met some very nice people in there, very talented people. Speaker 2 14:45 - 15:03 well that's that you do what that's that's good to hear because i have spoke to so many different adults families and individuals as well on the spectrum where they have had a negative experience so what so what made it positive experience for you and if you don't mind me asking so you're in there how long do you say for nine ten months Speaker 1 15:03 - 15:08 Well, I think it is at least nine months, it may be longer, it may be up to a year even. Speaker 2 15:09 - 15:15 So, things that they do with you to help you to be OK about yourself if you like. Speaker 1 15:16 - 15:46 Yeah, when I entered that it said don't feel sorry for yourself, no one cares about you in this place, you could stay here the rest of your life, or you can choose to try and get better. That was a bit of tough love, I didn't really appreciate the comments at the time. I can see what they meant, don't just sit there feeling sorry for yourself, do something about it. Now the treatment in those days was electric shock treatment, which I refute. Speaker 1 15:47 - 16:11 I had the sense not to go through with that. So there wasn't really any treatment and needless to say while I was in there, my health deteriorated and I stopped eating. I didn't eat for two weeks and I had all sorts of problems and the depression got worse. And it wasn't until I started making friends there that I found support from other people. Speaker 1 16:11 - 16:33 Some of the nurses were very good as well. And it's funny really, I can't remember that treatment other than the electric shock treatment, which they kept offering me and I refused. That really scared me, the idea of people doing that. But the nurses did say one thing at a time, which really sticks out now in hindsight, they said, Brian, you don't belong in this place, there's something different about you. Speaker 1 16:34 - 16:46 And that's interesting, because they could see I wasn't mentally ill, I had no mental illness other than depression, but they could see I was different, that it wasn't a mental illness. And I guess that's because I was autistic. Speaker 2 16:47 - 16:53 DEBRA I'm surprised they didn't pick up the autism while you were in there, because it wasn't that you were in there for a couple of weeks, you were in there for like ten months. Speaker 1 16:54 - 17:15 Well, don't forget, we're talking about 1980s, so in those days, you know, I don't think there was much awareness about it. You know, I'd be allegedly high-functioning autistic. I don't like to use that term, but, you know, just for the conversation. So, yeah, I don't think they picked it up, nor did my father, he was a psychiatrist. Speaker 1 17:15 - 17:20 So, there really wasn't much knowledge about autism back in those days, I don't think. Speaker 2 17:21 - 17:36 So you were diagnosed at the age of 50, and what made you go and get a diagnosis, and did it help you? Because I know many people where it feels like a big weight's been lifted, or others that have said it's made my life worse. Speaker 1 17:37 - 17:48 That's a very profound question. I'll try and answer it as best as I can. Okay. I had absolutely no idea I was autistic, no idea whatsoever. Speaker 1 17:48 - 18:16 Autism never featured in my life or so I thought. But then my youngest lad was diagnosed some 40 years ago in the street. And it was through his diagnosis, through that process, that I began to see my own traits mirrored in him. and then I attended this training course, early bird training course, the NAS for parents of newly diagnosed children, a good course by the way, I recommend that. Speaker 1 18:17 - 18:51 And one day I stood up in the course and said, hey, I'm autistic. And everyone told me to shut up and sit down of course, but it was at that moment, can you imagine, there's a moment in time when I finally saw my actual neurology, I finally met myself for the very first time. Few people have that almost spiritual moment in their lives. When I met myself for the very first time, I had a name to all the problems, to all the issues, to what I was, and I kind of saw myself very clearly for the very first time. Speaker 1 18:51 - 19:05 But that was the beginning of the battle. To get diagnosed was a nightmare and it was actually quite soul-destroying. I double-appointed my GP. I took the online test, which clearly showed I was autistic. Speaker 1 19:05 - 19:25 The GP was very good. He knew nothing about autism. Nothing, but he did manage to refer me to the psychiatrist who needed to refer me to the diagnosis center at the Maudsley. Anyhow, the GP referred me, but the psychiatrist kept blocking me every time. Speaker 1 19:25 - 19:34 He just said, no, we cannot diagnose you. You're too intelligent, he said. You're too intelligent. And I was absolutely fuming about that. Speaker 1 19:34 - 19:44 and he said you'd block the system. If we put people like you through the diagnosis process, then you would block the system. I said I'm blocking the system because I'm autistic. Speaker 2 19:44 - 19:47 DEBRA I think he's blocking the system, not you. Speaker 1 19:47 - 20:04 Well, it's a very good observation, Anne, and he was blocking the system. And when you don't diagnose people, you leave them in limbo. And it's very unfair because they don't have the same transformation I had. So after about three years of battling, I managed to get a second opinion. Speaker 1 20:04 - 20:35 And I was sent to this diagnosis team at the morgue. They were absolutely brilliant. I spent 30 hours being diagnosed because I had no previous records of my past or anything, no school reports, so I wrote a 137‑page letter explaining all my problems, all my challenges, and believe it or not, they read everything, they read the whole letter, and they diagnosed me with Asperger's syndrome at the end of the day. Speaker 1 20:36 - 21:15 At the time I was exhausted, I felt quite depressed, not because I was happy, but I was just so overwhelmed by it. As the months went by, I started to transform and I started to change my life and I think I stopped blaming myself for all the problems. And that's a big part of being autistic, we grow up and we blame ourselves all the time and we feel like we're defective, not because we are, but because that's how society treats us all the time. And I managed to get over my trauma and to get closure, to get self-awareness, self-acceptance. Speaker 1 21:16 - 21:29 And then I started to be able to control my anxiety because I had no idea I was suffering. And I started to do things I could never do before, like public speaking. I could stand in front of a crowd of 200 people. Speaker 2 21:29 - 21:32 DEBRA How did you feel on your first talk? What did you feel like? Speaker 1 21:33 - 22:00 Oh, well, the first talk I did was at the Michael Rutter Centre, which is next to the Wardsville, and can you believe it, to think I was looking out the window when I did my talk and I could see Ward 5 was the actual ward where I was institutionalised for nine months, about 30 years before what it was, and I was looking out the window, I said to everybody, that's where I spent my time as a patient. Speaker 2 22:01 - 22:02 DEBRA Oh, what a poignant moment. Speaker 1 22:03 - 22:16 It was just crazy, and I asked everyone to look out the window. And I was very nervous the first talk of course, but I got a standing ovation and I gained a lot of confidence, a lot of confidence from that. Speaker 2 22:17 - 22:24 Yeah. DEBRA Did you, have you told your son, sorry let me rephrase that, did you tell your sons about being diagnosed or did you wait a little while? Speaker 1 22:26 - 22:27 JOHN Oh no, I told them straight away. Speaker 2 22:27 - 22:29 DEBRA And what was their response? Speaker 1 22:30 - 22:54 Oh, they were very interested, yeah, delighted. It's strange to say really, because we live, we are autistic, we live with autism every day, we kind of matter of fact about it really with each other. So maybe if we'd been non-autistic they would have been very excited about it, but we're all kind of matter of fact about autism in our house. It's all part of our life really, everyday living. Speaker 2 22:55 - 23:02 So can you see traits of yourself in your sons and can, have your sons ever said that they can see traits of themselves within you? Speaker 1 23:04 - 23:25 I can, certainly my youngest, I can see lots of my traits in him as well. Interestingly though, although we're autistic, we are completely different as well. And that's a big factor, isn't it, with autism. We may have the same condition, disability, whichever you want to choose, but we are all so different. Speaker 1 23:26 - 23:42 I think my sons are very, very different to me, but we are linked by that thread of autism. Sons don't have anxiety, which is good. We tend to be a bit reckless, sometimes impulsive. I can see all of those traits in my sons. Speaker 2 23:42 - 23:44 DEBRA Do you have a clash? Speaker 1 23:46 - 23:58 NEIL Oh yes, probably because of my age as well. I don't need to tell you what young lads are like, they always want to know arguments. They always say, dad, don't use humour in your talks, you're not funny. Speaker 2 24:00 - 24:38 DEBRA I say that because my eldest son Patrick has got a diagnosis of Asperger's, he's 32 now and during the teenage years my husband has also got Asperger's, they clashed. I was almost like a referee between the pair of them and then you know as you say oh that's my son didn't find things that my husband thought were really funny or he thought it might be patronizing but now as my son's got older they've got so much better relationship and they talk all the time, and half the time I'm listening to them, I haven't got a clue what they're talking about. But they've got their own sort of banter, if you like. Speaker 2 24:39 - 25:01 But yeah, it was, we did go through a period of a time where they just constantly clashed, and I just felt like I was a referee. And obviously, they find it frustrating with my youngest son, Angelo, who's got minimal verbal skills. He's got high-pitched squealing sometimes, which they can find difficult. But yeah, it's, It's definitely not boring in my house. Speaker 1 25:02 - 25:21 NEIL – Well, I think we clash in a sense where we're all very argumentative and we all believe our opinions are right, you know how it is, and everyone wants to be right. Of course, they never listen to my wisdoms, though I've got some wisdom. As young lads, they think I'm crazy sometimes. It's funny, but we do actually all get on very well. Speaker 2 25:21 - 25:24 DEBRA – So, how old are they now? Speaker 1 25:24 - 25:28 NEIL – The youngest is 17 and the older lad is 28. Speaker 2 25:28 - 25:29 and how are they doing? Speaker 1 25:30 - 25:50 NEIL – They're doing very well, the oldest is a professional now and he's got a girlfriend, he's doing really well with his life, the younger lad I homeschooled and he's doing well, he's doing his A levels, we do maths class together and he's a fantastic lad, he really is. I'm so proud of my boys. I really am. Speaker 2 25:51 - 26:08 DEBRA So, talking about homeschooling, you've just touched upon now, because I get asked this quite a lot, what do you think, Hannah, about homeschooling, my son's struggling within the education system, they're not meeting his needs, so what sort of tips can you give about homeschooling and if it's something that you would advocate for and say, OK, give it a go. Speaker 1 26:09 - 26:42 ANTHONY I strongly would advocate for homeschooling because of the nature of where autistic minds are. schools think about socialising kids in a very different way and it's not always appropriate for autistic children. They need to recharge at the end of the day or they need time out and I think schools are still struggling very much. understanding autistic kids, so I do think for many it can actually be a lifesaver, and I really do mean that, it can literally save lives, because the bullying that goes on in schools, sadly it is a problem. Speaker 1 26:43 - 27:24 We've got all these awareness campaigns and things, but bullying remains a positive problem in schools. I'm an example of being bullied, it doesn't It produces adults with lots of problems and security and mental illness, let's say that word. So, the thing about homeschooling, my youngest lad who was very badly bullied at school, he flourished, his anxiety went, his meltdown stopped, he's never had a meltdown since he left school, he's able to focus now, he became a second-hand black belt in Taekwondo. He's achieved amazing things, he really has. Speaker 1 27:24 - 27:46 And his whole personality, he grew. Once I started homeschooling, he grew. A lot of his comorbid conditions ceased to be a problem. So, I really do recommend it, that individual attention, and we've got online tutors for all the courses and I can't do everything myself. Speaker 1 27:46 - 28:02 And they are marvellous, they really gear that for helping our kind of kids, and they give an hour and a half sometimes chatting on the phone if you want. that you can phone any time, you can do Skype with them, and it's a very supportive environment. Speaker 2 28:02 - 28:13 DEBRA Okay. So, during COVID times and lockdown there, it didn't really impact much then on your son, the youngest son, because he's already doing homeschooling and online tutoring. Speaker 1 28:13 - 28:31 It's a good question, because I saw what happened in schools and sort of panic and how the system of things just wasn't able to cope. And I know schools try to do homeschooling, but that's where they went wrong. We don't do homeschooling, we do home education. And there's a big difference. Speaker 1 28:32 - 29:00 It's not just trying to recreate school at home, but we do home education. And I think that works a lot better. But during the pandemic, we were fine in that respect. you know, the exams or assessments as well, that really benefited my son as well, because he did really well in the exams, whereas in the actual exam situation, if he'd gone to an exam centre, then all the stress of that, all the anxiety, that would have been more Speaker 1 29:00 - 29:12 difficult for him. So, it's been a bit of a blessing in some ways, but not in others, because his martial art club closed or went online, we couldn't do it online. Speaker 2 29:12 - 29:19 So if a parent's thinking of homeschooling, what do they need to do to prepare for this challenge? Speaker 1 29:20 - 29:39 Well, I think it is a conversation that has to be had with the parent and the child, and really you have to have the child on board as well. It has to be their decision as well. My son said to me, dad, please get me out of this school and home educate me. That's what he said to me. Speaker 1 29:40 - 29:55 So, I think it is a long thing about what you want to do, what you want to achieve. I think it is a way of life as well. So, when you do homeschool it impacts on the whole family. and I think it's a good way of saying it's a lifestyle change, but it's a very healthy one as well. Speaker 1 29:55 - 30:45 I think that's important to remember because exercise, things like that, different perceptions, different ethos, I think it can be very healthy and liberating. First thing though, they need to research home education and then you have to write a letter for the school, it's a simple letter, but you have to quote a certain act and you have to deregister your child if you're in a mainstream school that's a lot easier of course, you don't ask permission, you can expect to be, what's the word, inspected once a year by the LA, I always welcome that, you don't have to have them in your house, you can send off pieces of work, but I used to invite them over and say no come over, let's chat about home education, I'll show you the things you're doing, all the books, all his work is done. Speaker 1 30:46 - 31:02 I used to keep them there about an hour and make sure they listened to me and my son because I wanted to show them how good home education was. So there's lots of options. You can study what you want to study. You can study in regards to a child's special interests. Speaker 1 31:02 - 31:12 that's very important for autistic people to look at what are they really interested in and not so much what the school is interested in. If that makes sense to you. Speaker 2 31:12 - 31:21 DEBRA It does. So you talked to me previously about becoming an advocate, who inspired you to become an advocate and why do you want to become an advocate? Speaker 1 31:22 - 31:29 NEIL You might be surprised by this answer. It was you. DEBRA Really? Speaker 2 31:29 - 31:31 Wow, I did not know that. Speaker 1 31:31 - 32:11 you may have forgotten but I think it's back in 2011 or 2012 I went to the autism show and I listened to one of your talks and I remember you were you were a blasting professional, I used to look up to you guys and you used to put me down, and you're on that main stage in the autism show, and you're standing there very proud and saying I don't look up to anyone, I'm doing it myself, and I'm the expert now, something like that, anyhow, but a really rousing talk you did, and it inspired me, and I think I wrote to you after saying how much I enjoyed your talk. Thank you. Speaker 1 32:11 - 32:11 Wow. Speaker 2 32:11 - 32:13 See you in London. Speaker 1 32:14 - 32:17 That was the beginning. Speaker 2 32:17 - 32:55 Oh thank you. I do get many parents every day that message me saying that I motivate them and do you know what I find that a little bit of pressure for me as well because obviously you know I'm only human and you know I have I do have tough days and you know last couple of weeks have been particularly tough for me um with my youngest son Angelo and obviously Patrick's been working from home as well um so I just find sometimes that you know I need to be just Anna if you know what I mean and then now and again I might do a little dance on social media, it's a bit of a stress buster for me. Speaker 2 32:59 - 33:34 So how do you help the autistic community with their pages and advocacy, so if a parent is just starting on this journey I know it might be a bit of a cheesy thing to say but it is a journey and it is very up and down and it can be quite complicated and it can be quite daunting and it can be quite exhausting but obviously it can be quite rewarding if you get to the point that you want to get to so how do you help the autistic community with your own pages and can you share them so if people want to check you out where you are Speaker 1 33:35 - 33:54 NEIL – Yes, well my Facebook page I closed only two weeks ago I think, because I wanted to sort of, well you know the algorithms on Facebook are terrible, so I had a page about 15,000 people, but very little response, and the trouble is it wasn't being shared, the reach of the page was very small. Speaker 2 33:54 - 34:03 DEBRA – Yeah, I've heard that quite a lot lately, people are getting fed up with the algorithms on Facebook, I don't know why they've changed it, Speaker 1 34:03 - 34:53 yes and what it did it crushed my page and it crushed my willpower to stay there so after 10 years I had to close that page but what I'm doing now I'm on Instagram it's called the autism support community and um now how do I help the community I like to think I'm more of a supporter, there's pages out there very good at technical issues about discussing the traits of autism and they make wonderful memes and they can help and all those sort of things. I think I'm more of a support guy, so I like to be a bridge between parents, professionals and autistic people and I welcome all really. and the advantage of my page is it's a relatively safe space, I can't say safe space because there's no such thing on social media. Speaker 1 34:54 - 35:40 It's a safe space where people can relax and feel welcomed, especially parents of newly diagnosed children. I think my page is very good in that respect because I don't worry about terminology and I don't focus too much on that, I focus on real issues, mental health, how parents are feeling, and how autistic people are coping. I posted one of your posts about DNR orders on disabled people, and I focus on housing, education, all the real issues out there that people need support on, and sometimes just to listen to people as well. Humour, I use a lot of humour as well, because we cannot just talk about heavy things all the time. Speaker 1 35:40 - 35:49 so humour is a wonderful way of educating, yeah I think and helping people to relax and just take time out. Speaker 2 35:49 - 35:53 DEBRA Especially with all the stresses that are going on in the world at the minute. Speaker 1 35:54 - 36:15 NEIL Yes very much so. In the lockdown I think my job increased actually because I could tell online people are really stressed and people really suffering and the break in people's routines as well, especially for autistic people. I think we have got a bit of a mental health crisis on at the moment. Speaker 2 36:17 - 36:31 Most definitely. That's one of the hot topics that sometimes it's just people contact me that they just want to use me as a sounding board. Sometimes they don't want me to say anything. They just want me to listen because there's a lot, you know, it just helps them. Speaker 2 36:31 - 36:42 They just want to be able to sound off to someone which is like a safe space. So, talk to me a little bit about the documentary with Professor Uta Frith. How did you get involved in that? Speaker 1 36:43 - 37:25 Well, I saw something online about it, so I just applied, rather vaguely, I wasn't too interested, and I applied to take part, and then they did phone me, and they're on the phone for about an hour and a half, which is a long time for me, and then they they said would you like to take part in the filming, rather anxiously I said yes. We did 13 hours of filming, I met her and talked to her a few times, she was a lovely lady, fascinating actually, really interesting to talk to her. So, I did all the experiments in that documentary, or the research side, I helped him. Speaker 1 37:25 - 37:38 And she included a bit about empathy. She said, what would you like included in the actual documentary? I said about autistic people having plenty of empathy, if not too much empathy. And she included that, which I was very grateful. Speaker 1 37:40 - 38:11 But I did ask them to cut all my scenes from the documentary, because I was so anxious about doing it. I hated being on live. on TV, and it was just got to me, so I asked her to cut all the scenes, but you can briefly see me slurping a cup of coffee, I think, head buried in an iPad. I did everything else everyone else did, but there's a few scenes of me in, but it was a research side and talking to Uta. Speaker 2 38:11 - 38:43 If you don't feel comfortable being seen, that's fine. You also chat about being an anti-bullying campaigner and about safer spaces. We have briefly just touched upon it. What can you see that's different now with everything that's been going on with lockdown, Covid, because obviously more people are online and I've been contacted by so many families and adults about being bullied, about worrying, about saying things because they get attacked and they've been attacked in packs Speaker 2 38:43 - 38:53 and what have you. So talk to me a little bit about yourself being an anti-bullying campaigner and about a safe space. Any tips and advice for people listening in? Speaker 1 38:53 - 39:18 Well, yes, I guess that my, you know, my interest in that came from my childhood and then with my own son and having to take him out of school for his own protection and things like that and protect him. And anyway, you know, as I say, I'm home educated. So that's why I'm so interested in bullying. But I did notice during the pandemic that it became explosive and bullying really did increase. Speaker 1 39:18 - 39:53 And because I had that ties of anti-bullying campaign, a lot of people would contact me, fellow advocates as well, and they would talk about experiences and some really shocking experiences online. And there again, it's just a question of listening to people, but my main advice is online is to be very careful who you follow. because you can leave a comment, an innocent comment, and then you'll find 120 people attacking you. So, there's that danger, but I always recommend blocking that. Speaker 1 39:54 - 39:57 I do think it's much easier to block someone and just move on. Speaker 2 39:57 - 40:03 DEBRA I agree, block, don't engage, because that's what they want, they want to goad you. Speaker 1 40:04 - 40:13 Yes, don't engage. Even my friends, I constantly see them engaging. I tell them off. I say, don't engage because you're just a red rag to the ball. Speaker 1 40:13 - 40:20 And we're all going to have our differences. You can't change someone online. They have a right to their opinion, OK? And so do we. Speaker 1 40:20 - 40:33 But if it's not working out and it's fighting, it's much easier to block. And I think just to be careful where you follow. If you're following a page or group, are they well moderated? Does the moderator interact? Speaker 1 40:33 - 40:43 Things like this as well. And that's where my safe spaces come in. All my pages are moderated thoroughly. And I don't allow anyone on page to be bullied or harassed. Speaker 1 40:44 - 40:55 I would never allow that. So I try and keep all in that respect. I will block people freely if they're rude. I say it's the same way if you go into your doctor's surgery. Speaker 1 40:55 - 41:10 If you go shouting at the receptionist, then they're going to throw you out. Just because you're at the doctor's surgery doesn't give you the right to go in there and shout at people because maybe you're unhappy or something. So it's the same philosophy online. It's like a living room. Speaker 1 41:10 - 41:24 You wouldn't let a stranger into your living room to shout at you or belittle you. So you'd show them the door, or if someone's rude to you on the phone, they're shouting and swearing at you. We wouldn't allow people to do that. So you put the phone down and block them. Speaker 1 41:25 - 41:36 And it's the same online. We have to get used to blocking people. and it's good for them, it's good for us because it allows everybody to move on and I hope it stops all this deficiency as well. Speaker 2 41:37 - 41:45 So talk to me about your son and yourself having a second degree black belt, I need to watch myself with you, in Taekwondo. Speaker 1 41:46 - 42:31 NEIL That's something I'm very proud of, because when I took my lad out of school he was a very different lad, he was very shy, incredibly traumatised, but he did say to me, Dad teach me martial arts. I said I can't but I know somebody who can. So he enrolled at the club first, he did it for a year and he did really well, he gained confidence, he made loads of friends as well, which is the main way I could socialise in homeschooling as well, because we train every day as well, which is good, and he made loads of friends, so did I funnily enough with the parents, then in the end I decided to start training at 54 and We graded to black belt three and a half years later. Speaker 1 42:31 - 42:59 I was one of the oldest in the club to grade actually. And then just recently in July, we graded to second dad, which was a very hard thing to do. but it has given us a lot of focus, a lot of confidence and discipline. I do actually strongly recommend it for autistic kids as well, for people with disabilities, especially for women as well to gain confidence. Speaker 1 42:59 - 43:43 You know, especially online when you're out and about. again self-awareness, the best self-defense is often to not put yourself in the situation in the beginning and then you learn those sort of skills sort of you know when you walk along the street to analyze situations and yeah that sort of thing really so it's been a big part of our lives and it's it actually can't be public speaking because I have to get up and do these patterns, some are 56 moves long, we have to do these patterns in front of the class, and so, I can't gain confidence doing that, I've always been a shy person, but now I can do that, I help with my lad as well, we help teach other kids as well, other adults. Speaker 1 43:43 - 43:50 Yeah, it's very good. We do a lot of teaching. Now you're black belt. You're expected to teach and set a good example to other people. Speaker 2 43:51 - 43:52 Have you been in any competitions? Speaker 1 43:54 - 44:09 Not for me at my age, thank you. I'm like if I can get out of bed in the morning, let alone compete. My younger lad would like to, though. I think he'd be very interested in doing something like that because he likes a sparring aspect. Speaker 1 44:10 - 44:20 He really is very good at sparring and jumping in the air. But at my rather older age, I like my feet on the ground, I think. Speaker 2 44:21 - 45:08 Yeah, we chatted briefly before we came on about one of my ambassadors, Tom, and he's a Commonwealth champion and he advocates for people to, you know, especially people on the autism spectrum to try martial arts. My son Patrick's tried it for about 18 months, he did kickboxing Yeah, so he went along with this friend, they've been friends since they were at school together, but he carried on, but Patrick decided he wanted to do something different, but he gave it a good go for 18 months. I always say if you try something and you give it a good go and if you just say, hey, it's just not for me, I did try it, that's for me that's what it is and obviously Tom is a great advocate and he was talking to me about Speaker 2 45:08 - 45:33 how stressful it was at first when trying competitions and Jo who's one of my first charity patrons who was world kickbox champion three times and she used to talk to me about the sensory issues that she found difficult but once she was in the zone she was very, very powerful. She's somebody you don't want to get in front of either. So, yes. Speaker 1 45:33 - 46:05 NEIL – I know Tom very well actually, I've talked to him a few times. Very nice lad, yes, he's a good friend, we talk about condos sometimes. But, yeah, I think it's, I strongly recommend martial arts, and the thing is to choose the right one as well. Because some are kicking, some are kicking, punching, others like Jiu Jitsu are grabbing people and wrestling, so you've got to find the right one which you feel comfortable doing, but then also the coach is very important as well, you've got to have a coach who is anti‑bullying, has Speaker 1 46:05 - 46:16 a kind ethos and welcomes disability inclusion. We're very lucky we've got two coaches, who are absolutely brilliant and I wouldn't have got there without their help. Speaker 2 46:16 - 46:16 Yeah. Speaker 1 46:16 - 46:18 So that's important to remember. Speaker 2 46:18 - 46:34 I spoke to a few parents that are a bit worried about sending their sons to martial arts in case they say for example get bullied in the playground and then they use some of the moves and they're worried about that it might get them into more trouble. What would your opinion be about that? Speaker 1 46:35 - 46:58 It's a very good question. I get asked that a lot as well and I would say don't worry about that because the one thing about martial arts, if the coach is good, you must have a good coach, you will learn self-control and you will learn discipline and you don't use martial arts, we mustn't use them. And that's strange, you learn all these skills, but there really are some of the things we could do. Speaker 1 46:58 - 47:17 You could take someone's life or cripple them. You would never want to do that, unless it's an emergency and if it was a last resource and someone had a knife maybe. But the thing is, it teaches you self-control, discipline, and you lose your fear as well. And that's how it helps kids who've been bullied. Speaker 1 47:18 - 47:52 It's not because they've got the skills. but it's more it's more to do if they lose the fear they gain confidence and that's so important because um what does the bully prey on they prey on fear they prey on a vulnerable child who's alone and they do that because bullies do that because they are fearful and if you don't have the fear inside you then you're you're less likely to get bullied in my opinion So I say to parents, don't worry about that, because they will learn all that in their classes if the coach is a good coach. That's very important. Speaker 1 47:53 - 48:08 And I don't think they would use it to defend themselves in a normal playground fight, because I don't think they would get in a fight in the first place. That's another thing about martial arts. It's not getting in that situation in the first place. Speaker 2 48:09 - 48:22 So, I was reading as well that you did a lot of work as an advocate in Brazil, and you were a UK representative for Onda, what is Onda, talk to me a little bit more about Brazil, you didn't tell me about that, you're a little dark. Speaker 1 48:24 - 48:50 NEIL— Sorry, Brazil was my special interest since I was six, and I watched the World Cup and Brazil playing and I was fascinated by it, then I started going to the library and reading encyclopaedias from cover to cover, and researching about Brazil, the native Indians there. I married a Brazilian. I lived in Brazil for two years. I've been there 12 times. Speaker 1 48:50 - 48:59 I learned Portuguese in eight weeks. Wow. Yes, that's the only language I speak reasonably fluently, I'm very rusty now. So, it's kind of my special interest. Speaker 1 49:00 - 49:21 When I first did my advocacy, I used to go to Brazilian sites and sort of help out there and I'm probably more well known in Brazil than I am in the UK actually. Okay. That was always, I don't know, I always loved Brazil and the culture there, it fascinated me. but then I took part in helping it on as a UK representative. Speaker 1 49:22 - 49:52 I haven't actually really got into that role because of the pandemic. So, that's something I've got to sort of grow and sort of contact. DEBRA I can't remember, they changed the name recently, it used to be Hayo Nida, but it's like, I suppose equivalent to the NAS, but it's very inclusive organisation, they help autistic people, families, they help with inclusion and stuff. So, it is a similar sort of thing to our NIS. Speaker 2 49:52 - 49:59 DEBRA OK, got you. What is the support like over there? What is the support and the education like in Brazil? Speaker 1 49:59 - 50:34 NEIL It is very difficult in Brazil, everything is expensive there. it's autism is probably more in its infancy in Brazil I would say, so it's very hard to get the diagnosis of course and get any support, we're lucky we have the NHS here isn't it, very lucky to have that, but in Brazil everything's much harder and people need a lot more support, but the parents there are very good and the organisations, a few organisations are very good and they really are inclusive as well and include autistic people as well in running them which I like. Speaker 2 50:35 - 50:53 Yeah so if I gave you a magic wand and I said what would you like to see change for autistic people, parents and the autism community now and in the future so if I said here you go there over to you Brian let's make the changes what would you like to see change? Speaker 1 50:54 - 51:28 Well it's such a That's a loaded question. You could write a book on that, but I think just greater acceptance really, I think I'd like to see, you know, in an ideal world, the end of bullying, I really would. Because that impacts on education and that impacts into adulthood as well. So, if bullying became a thing of the past, greater support to get into work, you know, I think it's 87% of autistic people, are not actually in full‑time paid work. Speaker 1 51:29 - 51:34 Is that correct? I think 87% are not in full‑time. Speaker 2 51:34 - 51:42 DEBRA It is 15% for quite some time of adults that are in full‑time employment. NEIL It is very low, isn't it? Speaker 1 51:43 - 51:58 So, clearly there's a problem there. I think autistic people have so much to offer, we have a lot to offer the workplace and I think the workplace would be enhanced with autistic people We know we are creative. We are very honest. We're very loyal as a whole. Speaker 1 51:59 - 52:15 We're reliable. And I think we have a lot to offer the workplace. So, I think the sooner we can get autistic people, you know, who are well enough fit back into work or into work and give them the support they need, that would really help. because the disclosure diagnosis at work is a two-way thing. Speaker 1 52:16 - 52:49 Sometimes it works, you get reasonable justice, and other times I hear from other people it can be a disaster and they face bullying in the workplace. So there's a lot to be done in that particular area. Yeah, also I think in terms of mental health, dealing with our comorbid conditions, I think there needs to be a lot more support there as well. I think that it when we get to adults, for some autistic people, it can be absolutely dangerous if they have a meltdown in public or something. Speaker 1 52:50 - 52:59 They could be sent to a psychiatric institute indefinitely, isn't it? There's cases of that where autistic people are placed in institutions. Speaker 2 52:59 - 53:04 DEBRA MILLS-SCOTT Miles away from home. Miles away from home, usually. Speaker 1 53:05 - 53:24 Yes, and I find that scary as well, because that shouldn't be happening now. Now we're aware of it, that should not be happening. And yes, it is because the services out there aren't well trained and they're not able to deal with autistic people with that level of problem and challenges. So that leads to change. Speaker 1 53:25 - 53:44 So I think there's a whole range of things that I'd love to see change. I don't think they will happen in my lifetime, sadly, but we keep fighting for those changes. And yeah, and diagnosis, of course, that's the other thing. Greater access to diagnosis, because it's a bit of a privilege for many. Speaker 1 53:45 - 53:58 We're lucky to get a diagnosis. I don't think I get my diagnosis nowadays. And in other countries, of course, you know, a diagnosis of autism is almost impossible. It's prohibited at the cost. Speaker 2 53:58 - 54:04 So do you know how long it takes in Bromley where you live to get a diagnosis? Do you know what the wait time is? Speaker 1 54:04 - 54:13 Do you know, I don't know, but I think my youngest lad, it was about two years. Do you know the figure for Bromley? Speaker 2 54:14 - 54:33 I would say on average, it's between two and five years across the country. Again, very much a postcode lottery. And obviously some people do wait longer, battling. So if somebody was to ask you, What's the best way of going about it? Speaker 2 54:33 - 54:47 Would you recommend it? First of all, as an adult, would you recommend it to somebody who's listening to you now and thinking, I think I might like to go for a diagnosis, I'm struggling at the minute. Would you recommend and what would you say would be the best way of going about it? Speaker 1 54:49 - 55:03 I would recommend it. No, I am generally pro-diagnosis, and I think it's a very useful tool to have in your toolbox. I think it's a very positive and constructive thing to do. But the thing is, it's a personal choice. Speaker 1 55:04 - 55:30 It really is. You have to think about if you have a career, your family, there's all sorts of things you have to think about. But at the end of the day, none of that matters even, because it's how you feel inside. So if someone wants to examine all their challenges and try and find a better way forward and find answers and questions, and if you want to kind of help yourself, then I think a diagnosis would be a good first step. Speaker 1 55:31 - 55:44 I did mine by, I went to the GP, I booked a double slot first. And then I had to talk to the GP a few times. I think I said already about getting referred to the next stage. I did an online autism test as well. Speaker 1 55:45 - 55:53 So that's a useful thing to do. And then when you go for your diagnosis, you take that with you, and you can show them, look, I've answered these questions. Speaker 2 55:53 - 56:22 Yeah, I always recommend people have a look at the online diagnosis. So it gives you some prompts as well to talk about. So because this program's about well-being, mental health, about looking after yourself, Obviously you know you're working with your sons and you're caring for your sons so what do you do to help yourself relax what do you do for your own well-being so that you're just Brian you're not dad you're not a carer yes Speaker 1 56:22 - 56:32 That's a good question as well. Well, what I do is, I do a lot of bike riding. Actually, I do that with my son as well, and that breaks out the day. Lunchtime, we'll go for a 10-mile bike ride. Speaker 1 56:33 - 56:49 We try and do it every day. That's great for anxiety and depression. We do a walk every evening as well. We walk about three miles, and we find walking a really good time to sort of talk and bond and talk about, you know, things, environmental studies or friends. Speaker 1 56:50 - 57:08 It's a great time just to relax. talk about our favourite TV programmes, Netflix programmes, and it's a great way to relax. So walking, I think exercise in general is so important, it really is. I run my pages as well, my page now rather, and do my autism advocacy. Speaker 1 57:09 - 57:18 I find that helps me as well. I love helping other people. Sometimes I can't always help myself, Anna, but I think if I can't help myself, I'm going to help somebody else. Yeah. Speaker 2 57:19 - 57:22 And sometimes by chatting to somebody else, it helps you. Speaker 1 57:22 - 57:51 it does yes it's a two-way process isn't it set up the page that help other people but also to provide a support system for myself because there was no um there was no support when i got diagnosed there wasn't a lot of support out there so that really helped as well um i do tai chi as well I do that and that helps because it's a slow motion moves and it concentrates on breathing and timing and that's absolutely brilliant for anxiety. Speaker 2 57:51 - 57:53 Okay, that's good. Speaker 1 57:53 - 58:01 Yeah, reading, researching. I don't know if you know, do you know Dr. Judy Smith is doing all these wonderful videos at the moment? Speaker 2 58:02 - 58:24 I don't actually, but it's something that maybe you could share in a link. I'm just aware of the time that we've chatted so much, it's been a joy chatting to you. So I just wanted to share with everyone that if you wanted to contact Brian, he has got an Instagram page and it's called Autism Support Community. So I'll just repeat that again, Autism Support Community. Speaker 2 58:24 - 59:20 So he's made a lot of good points here and a lot of food for thought, but both you and I are very into ending bullying and greater acceptance, and also about employment. And I believe that Autism Awareness Week, month, or whatever it is, Autism Awareness Day, the focus is on employment and is on reasonable adjustment. It is on giving our individuals, our families, our loved ones, a job just like everybody else as they always say they want the same as everybody else they want good education a job maybe a partner a house to live so um i just wanted to say it's been a real pleasure talking to you and um you've achieved so much you should be proud of what you've achieved with your yourself with your sons as well so it's been i've really enjoyed talking to you and it's just So if you wanted to read a little bit about Speaker 2 59:20 - 59:33 Brian, it's going to be on the charity website. I'll just remind you, it's www.annakennedyonline.com. So check out the latest news. And if you want to look more at what Brian's doing, it's autism support community on Instagram. Speaker 2 59:33 - 59:57 Thank you everybody and it looks like possibly we could be coming out of this dreadful Covid but who knows just take it a day at a time look after everyone and be kind I think the thing is be kind and you don't know what everyone else is going through so thank you again Brian and I wish you all the best and to your boys as well keep going and keep going strong.