Transcript of Amplified: Autistics in Conversation with Reframing Autism, Episode 5: Tigger Pritchard
[Music intro: ‘Winter is here’ by Elliot Middleton for Premiumbeat, a delicate piano melody which creates a hopeful mood]
Ginny: Hello and welcome to our fifth episode of Amplified: Autistics in Conversation with Reframing Autism.
I’m Ginny Grant, an Autistic advocate, a writer, and Reframing Autism’s Communications Manager.
Today I’m thrilled to be chatting with Tigger Pritchard. Tigger is an awesomely Autistic Autism and Pathological Demand Avoidance advocate, trainer and consultant, based in England. Tigger has devoted the past thirty years to working with neurodivergent individuals in many capacities. He consults to individuals, families and organisations, sharing his extensive skills, knowledge and lived experience. And he’s the longest-serving Makaton – that’s keyword sign – tutor in the United Kingdom. He’s also involved with the National Autistic Society in the county of Cornwall. And he runs the Facebook page The Autistic Coffee Shop with Tigger Pritchard, which features a wealth of Autistic and professional resources, as well as an Instagram account and YouTube channel. And for anyone wondering, Tigger is his legal name.
For those of you who are new to this podcast series, Reframing Autism is an Australian-based not-for-profit organisation which is run by and for Autistic people and their families and allies. It is dedicated to creating a world in which the Autistic community is supported to achieve acceptance, inclusion and active citizenship. And we are all about nurturing and celebrating Autistic identity.
[Music continues briefly]
Welcome to Amplified, Tigger!
Tigger: Oh, thank you so much. I laughed at the bit where you said, about Tigger being my real name. So many people think about it and don't ask. But I'm very candid. I, I, my birth name was Terry, way back in the 60s. They were a Welsh family, they expected a girl. My name would have been Sian. And I popped along a couple months early, but I never felt like Terry fitted me. I was named quickly on the spot because truly they thought I wasn't going to survive the evening. And then, years ago, people started calling me Tigger for a variety of reasons. It stuck, and I changed it. And many people do just look, this that kind of look where they think, is that his name? And thank you, but I'm so honoured to be, to be on this podcast, to see you again and that, thank you for the very, very kind, kind words.
Ginny: You're very welcome. So let's start with your Autism journey. Can you tell us a little bit about when and how you discovered that you're Autistic?
Tigger: Well, here you go. I was, am a professional in the Autistic world and have been for over 30 years and loads of places. But last summer, in a back garden in Cornwall, at my partner's house, I stood outside in the backyard. Actually I was sitting down having a cup of coffee – I like coffee – thinking, this isn't right. I couldn't, I didn't fit into the house. I was just, things weren't working out, and I just thought, what's going on? And after all those years as a professional, I suddenly sat down and I suddenly thought to myself and realised, I went, you're Autistic. That's why, that's why, that's why, that's why and it slowly dawned upon me. And I then saw my partner and said to her, and went, “Hi. I think we're having a complex time, I'm having a complex time because …” And she beautifully just went, “Okay.” And then, so really for me that solidification isn't even a year old yet. I've yet to celebrate my first-year birthday, so to speak. So it's new, but it's, it was, it started last summer, just thinking why I didn't feel like everybody else in the house, or why, I just, everything seemed to be, to be different from them. And really it was a lightbulb moment, for want of a better term, where I suddenly sat there went, Hang on a minute. This is why. And then since then, as the saying goes, almost everything – I've got a long journey to go – is making sense of not just the, the months I was in lockdown and that first lockdown, but also the years, the decades that preceded, and very much so making sense, which is, which is fascinating, interesting.
Ginny: So, what has it been like for you, only sort of just realising and embracing this part of yourself later in your life?
Tigger: Well, it's, there is that professional bit, where I thought to myself, hang on a minute, you'd been been working with, with neurodivergent individuals in the world of Autistic experiences and policy for years, you’ve only just realised? And also, the thing that fascinated me most was when I started to open up to people close to me and say, you know, people I’ve known in professional settings, people who have known me as friends for, for several decades, they were all kind of shocked to begin with. I was really nervous by how they were shocked, but they were shocked, not because I was saying, “I'm Autistic”; they were shocked because they went, “What, didn't you know?” And I was like, “What?” And they went, “Didn't you know?” And I went, “What do you mean, Didn’t I know?” And they would go, “We've known for years.” There was, there was a man who spoke to me, I think, for 25 years and he went, “The first day I met you, I just went, yeah, he's Autistic.” So, that did kind of knock me a bit, I must confess from a professional viewpoint. But what's it been like realising later in life? All of a sudden, huge parts of my life are making sense, whereas before they didn't, whereas before I might think it was, yeah, a mental health issue, where things didn't work out as planned, where sometimes I'd be saying and doing things and people's reactions were like, what's going on here? It just, it just begins to make to make sense, really. And what I’m on now is this amazing, gorgeous, complex, frightening, scary, beautiful journey of realising who I am, that, that self-awareness, that self-realisation of who Tigger actually is, who Tigger actually was and who I’m becoming.
There's also a lot of rethinking about who I am, not just personally but professionally as well. So a lot of things I've done over the past 30 years, a lot of training I've done, all the stuff I've delivered, I now look back and think, well, no, no, no, no, no, no, no, no, no, no. Because you know, that 30 years I've seen a lot of things change. You know, I can remember when I worked for a care provider in, in this county of Cornwall, I remember in 1987, as there were, I think, ten individuals living in this, in this house. I was told, these are the only ten people, those terms, with Autism, old terms, in Cornwall at that time. And I was like wow, okay. And you know, I remember standing at the premiere of Rain Man at the cinema in Cornwall in Truro, and, you know, everything that’s gone since. So I've been on that journey of huge changes, which I've embraced along the way thankfully. Also been educated by awesome friends and individuals and families and colleagues and so on. But now it's, it's, it's, it's, I mean, yeah, I’ve even got my first birthday, so to speak, yeah. So every day something new pops into my head or I read something, I research something or I'm doing a lot about masking at the moment. Oh wow, wow, that all makes sense. Yes, it's, and I am, my brain is all over the place at the moment with reading, with thinking, with digesting and, and a lot of internal thinking, but also you know the other thing is I'm going to, I'm going to open up a lot more about myself to the people that are very close to me. And that isn't easy, because I'm always afraid that we will have rejection. And also that honesty of, even on my YouTube clips I did a video about a couple of doors. My partner's house is open plan downstairs, and so you've got the living room in the kitchen. And every time one of those cupboard doors banged, it was like an explosion, was like a rocket. I was having a real PTSD reaction to that and it would accumulate over time until I would literally run out the house and sit on top of the garden for hours just to get away from those cupboard doors. And I very quickly purchased those dampeners you put on them so the doors close quietly. And I remember at the time saying blah, blah, blah, blah, “You know, I just don't like the noise, that’s all.” And then actually sitting down and saying, “Look, this is why. I recoil when that door bangs, I feel sick when the door bangs. I feel frightened when that door bangs. I have to get out when that door bangs. And realising that, thinking I've got really gorgeous accepting individuals around me, but it was, I mean, that's, that's vulnerability, isn't it? It's saying, look, you know, I, I am scared by a cupboard door banging to the extent that I need to get out the house after a while because I just can't take it anymore. So it's a, I'm loving it in some ways; it's hard work. But I wish I'd realised maybe at 45, or 35, because that might have been a bit of a difference, but I didn't, I realised it at 55, and I'm really glad I did.
Ginny: Never too late. So you've described “the world of Autism” as your passion in life. How did that passion develop?
Tigger: I moved from Wolverhampton, which is a place in the Midlands in England, to Cornwall back in the mid to late 80s, and I've known some, some individuals, neurodiverse individuals, up in that part of the country, moved down to Cornwall, did some volunteer work, and it all kind of started from there. But very early on, I knew where I felt safe; I knew where I fitted in, I knew … And this is it, this is why I know now. I would go into a room and I’d think, yeah, that's noisy, yeah, that cupboard door is horrible, yeah, that telly’s on too loud. Oh God, no, that chair’s not right or that light’s too bright or that light’s on. I mean, all that kind of stuff, yeah? I just get it. And I think that was when my passion came along. I think, to be brutally , I think I felt safe. I felt me, I realise that now. It also I went through in the schools and in the colleges. We knew it with the early years with the care provider in the workforce, I fitted in; I felt safe. So initially it was it was through my work, and I mean, even, even very recently. Well, in the past decade or so I was extremely passionate about people understanding the Autistic experience, and getting it right. And listen to my bit of passion but also, also at that point, you know, that time ago listening to the actual voice of, of Autistic individuals and learning from reality and their experience. And I think I just, I just felt safe. I look back at it now and I think, yeah, you felt totally safe, you felt totally you. I didn't feel like me anywhere else; I really felt like me in those classrooms.
I had a, a … the thing about safety, I had a family wedding several years ago. I was scared, I mean, I was scared, I was really scared, all these people I hadn’t met before; I was petrified. And then a young individual came in, a young neurodiverse individual came in. There I went. They’d all said, “Oh, you’ve got to meet Tigger, blah, blah.” I, I sat down on the floor with this guy, I chatted, I communicated appropriately and so on, and just that, in the meantime, I felt safe.
And that's why, and that's where I think the passion has come from, because it's me. So, you know, and recently that passion has grown, and I've met so many amazing families, individuals over the years that have helped me, supported me, taught me, re-educated me gorgeously and still are. And I think that passion just came from, it came from the fact that I felt, that's where I felt safe, that's where I felt I fitted in, and I realise that now; I didn’t then but I do now. And it is, it's, it's consumed, it's all consuming for me. If I have a very strong interest then this is it; this is what I want to do. This is what I love doing. And it's that, that drive to re-educate people at the moment, especially with their understanding of what the Autistic experience is, it’s huge and extremely important because so many people get it wrong for a variety of reasons.
Yeah, so the passion I think came from myself, the passion came from the fact that that's where I felt safe. All of a sudden, that's where I felt I could make a difference and I understood why somebody didn't like the environment or there was a sensory overload going on or the communication needed to be implanted, and so on and so forth. I just, I just fitted in, and from there, through this, yeah, this is what I want to do. And it just, it just … consumes me.
Ginny: Fantastic. And I can absolutely relate to having that really strong passion to re-educate, as well. So you have a particular interest in pathological demand avoidance, or PDA. This is an autistic profile that's only just gaining recognition across the world. Can you explain briefly what PDA is for our listeners who might not have come across that, that term?
Tigger: It's, it's, well, it's been around since the 80s in terms of use, and looking at it, she was a, an individual in England, who was working with a range of individuals who were awesomely Autistic and began to think to herself, hey, I’m meeting people, it's like autism, but, and silly people go oh it's like Autism, but, and though. The majority of the planet understands what it means to be Autistic in an ever-changing flow, because it's changing very quickly. We understand that it's, you know, being Autistic is dimensional and you know, you’ve got overlapping differences and challenges and strengths that present differently and so forth. PDA is relatively new. Very new, really, if you look at the 80s – the 80s only seems like yesterday – that’s my age coming out again.
See you've got this. You've got pathological. So, you got pathological demand avoidance, so I think to myself, right, let's break this down a bit. What does pathological mean? And very often people get stuck on the pathological bit, but they shouldn't. It's like debating about whether or not it's the right term to use but it's there, and it works. And I say to myself, look, pathological shows that these actions that we are seeing a completely out of control in the individual. When you look at the demand for it and you think, hey, think of a demand, think of any demand, think of an external demand, an indirect demand, an implied demand. I mean, people, internal demands: the need to eat, you know, the need to self-regulate, to go the toilet. These are demands that sometimes we don't see, for individuals, because we just, we expect them to be there. We don't understand the pressure they can put upon somebody. And you've got the external demands of our routines, get up, go to school, go to work, eat this, sit there, so on and so forth.
And then you've got the avoidance bit, and I say this strongly again and again and again to people, the avoidance bit is, I cannot do this. So, I often look at PDA as a … and hey, I learn for PDAers – oh, there are some awesome ones out there. There's this need. It's a huge response to threat and anxiety, and therefore you have that need to be in control, to reduce that incredible threat and anxiety response to all those things that are going on that are out of your control, both internal and external.
I mean, if, if, if I may say, I may say, just for a moment, you know, let's have a bit of fun if you are okay in taking part in this? So what I'd love to do now is, I'd love to do some math questions, is that all right? I love maths, right? So what I'm going to do is, is ask you some math questions. I'll go through them on air, we'll keep them in the podcast, and you just answer them verbally, is that all right?
Ginny (laughing): Not happening!
Tigger (laughing): Right, okay, I'm sorry, that's not gonna happen at all, yeah, but I do that very sneakily, very cheekily, sometimes to get people like inside of, all of a sudden your anxiety levels have gone through the ceiling, if I can use that term, oh, your face was a picture, it was lush, yeah.
But what I'm trying to show with that is I'm trying to show that that anxiety level is huge. All of a sudden, it’s only a small example, all of a sudden, you were not in control of what was happening, you were faced with something that made you extremely anxious and extremely frightened, and you wanted to get control and the only way you could get control there was to say, “No, it ain't happening.” Forgive me for that.
Ginny: It's a great, it's a great example, and you did happen to pick a subject that I really struggled with!
Tigger: Sorry, I actually, I actually … Hey, I’m a closet physicist, fond astronomer, all the rest of it, but I can't do math for love and money, so if somebody did that to me I'd run out the room. But I've done that, over many years trying to get across, you know, an understanding of how quickly, how devastating that response can be for people, if you multiply it by several thousand. I love that. I've had some people go, I've had people go, “No, I'm sorry, you're not,” very forcefully back at me. And then I do what I've done now and go actually, sorry. Calm down. Do you know what happened then? And it is just that realisation, so I … There's the PDA Society in Great Britain who I adore parent led, professional led, PDA led, they have a wealth of information about what, what PDA is, and in Australia and New Zealand, there is PDA ANZ, which is a Pathological Demand Avoidance Australia and New Zealand, which are found on the PDA website. Look at those places, and you have a young individual who is on the Autistic profile, and then you've got a list of criteria such as, you know, obsessively, persistently, dramatically, pathologically resisting ordinary demands, ordinary demands brush your teeth, you know, stand up. Sit down. You've got the bit about, you know, being sociable but that's sociability that's there for somebody is really, there's a term “socially strategic” and another friend of mine said, “Yeah, they’re manipulating the situation to reduce the demands”, yeah. And you've got a, you know, there's aspects here, this is on the PGA website and other places as well, you get a bit about the, the sudden emotions and mood swings suddenly switching. And you often hear the term Jekyll and Hyde and those emotions suddenly switch in bang, just like that. And it goes on from, you know, being comfortable in role playing, pretending, focusing intently sometimes on people, but that need for control it definitely is an incredible response, an automatic response to threat and anxiety, and that's why I often say to people, “You know, it's not … PDA is not “I don't feel like doing this today”, PDA is not having power games, PDA is not have a bit of a giggle here. PDA is driven by a huge fear around anxiety and threats that those demands give, both internally and externally. And the response is that. There, there are some great PDAers out there, some great YouTube clips. As I've said already, I adore the PDA Society; it's one of the best websites I know with continually updated information. And there's a lot of, wealth of stuff out there but it's, it's something that I have a passion about. And I think I've been passionate about it because so it's not in the diagnostic manuals. I'm not saying I love the diagnostic manuals either, that's, that's a big one for me – don’t want to go there, at the moment – but it's not in the diagnostic manual so you have so many professionals, the families, individuals make that decision straightaway, who will go straight to, I'm sorry, bad parenting, you know, environmental stuff all the rest of it, without looking at the reality of that neurotype, which drives me rrrrrrr! My apologies. And it's, that’s something I feel very strongly about at the moment you have a lot of awesome individuals and families that have talked to me over the years and that I'm meeting, who, you know, at that first reaching out for help are dismissed straightaway, and that's something that has to stop. And so, you know, PDA Society, gorgeous, and myself and some other people out there who are continually fighting battles to make some professionals, not all, understand that the world of PDA does exist. It’s that, there's that lovely quote and I won't use the full words but it's a, it's an image I've shared some times and it's about, it's about Pluto been discovered I think in the 1930s by Clyde Tombaugh – I'm pretty bad at pronouncing names – but it was discovered in the 1930s, and somebody writes at the bottom, Yeah, I'm pretty sure it was there before then. Yeah? Just because it wasn't discovered doesn't mean it didn't exist. The same goes for, you know, being Autistic. The same goes for PDA, pathological demand avoidance. But it is, it is a fascinating subject because it's new. It's very often misunderstood. But the thing I dislike intensely at moment is so many people sometimes just ignore it, say it doesn't exist because it's not in those manuals. But just think further than that. Those manuals are not perfect. And it's, you know, get to the websites I've mentioned. There’s a, there's a huge wealth of information there about pathological demand avoidance.
Ginny: Can you tell us a little bit about your involvement with the National Autistic Society?
Tigger: The National Autistic Society is Great Britain. I first became involved in it about 20 odd years ago when I was a lecturer at a local college. I came to the meetings to learn, really. The NAS is a, it was set up initially by parents back in the 60–70s, initially parent led. And it, was one of the first organisation of its kind in the planet to, to look at raising awareness around individuals who are awesomely Autistic and their families. Very recently, about … I had a teaching career that came to an end about seven years ago because I decided I'd had enough and I went freelance, and literally coinciding with that, and doing the other stuff that I do, I was approached because I've known the National Autistic Society group in Cornwall for a long time, and that it was, it was in difficulty. It's a volunteer group. We are volunteers. And I, you've got to give back to the planet, if that makes sense. You have to. And I thought, Hey, I'm doing this bit as a professional, I'm doing this bit as freelance and so on. But I also need to do this. So I got involved again but in a much larger capacity than I ever have before. I was originally vice chair, and then, the then-chair had to leave because of other responsibilities, and I just took over the position of, of chair very kindly.
We're very small group. And we, we do what we can in this very big county of Cornwall – there's only a handful of us. But, but even then, even then before I knew about being awesomely Autistic, you know, there's the, you know, that awesomely Autisticness is there my family and … but even then, I was very passionate about the fact that the National Autistic Society in Cornwall had to have a genuine, authentic Autistic voice, which at that point, I didn’t realise part of that would be me. So I tried to get involved individuals who were either diagnosed – forgive that term – identified, self identified as Autistic as part of what we do. I set up a Facebook page, which is another Facebook page I run. And just equally for families and individuals in Cornwall, and it was about raising awareness and also raising awareness of what it is, what being Autistic means in the 21st century, not the 20th century, not that medical model which so many people still get. This is, this is, this is where the passion comes from: I am fed up of … I mean, a friend of mine shared some up-to-date online training the other day that, that they are doing to gain a module in, in Autism awareness and whoa, you know she wrote a complaint straightaway to this, to this body, saying, well, you're using language that's 20 years out of date, you're using diagrams that are really, you know, using terminology that is very, very horrific for some people, and there were puzzle pictures, puzzle pieces everywhere. And that's going to change. So, so yes, so part of the reason I got involved with the National Autistic Society in Cornwall, and what I'm doing now very much so, is to make sure there's a balance, and to make sure that there is a strong representation of authentically Autistic voices involved in this voluntary group in Cornwall, and that then pushes us to develop in terms of what we do regards to what we can do in this present moment in time, which is mostly Zoom based and Facebook based, to educate people. So, you know, amazing stuff from, from your pages I share on to the NAS Facebook page, I make sure with the others that are there, that we share really up-to-date information. As I'm sure you know the knowledge of some individuals of some family members through no fault of their own, of some professionals through no fault of their own, is really out of date. And so I'm hoping having worked with some of the great people on the committee to bring the knowledge of what it means to be Autistic in the 21st century to the people of Cornwall. There’s some amazing people out there; it's just getting that knowledge base across to everybody. So the NAS, it's a volunteer position, I love it.
I love it again, because it's that changing people's attitudes, it's that, you know, like I said that, that, that friend of mine joined this and paid for this online training course to gain some qualifications as part of their job, and boom, it's horrifically out of date. And yet, this is what people are getting if you go to some areas and you say, boom, you’re getting very out-of-date stuff.
I mean the, the NAS had their AGM last week, and I, virtually of course, joined in. And I found out that the present chair of the NAS in the country, of Britain, is leaving after ten years, and they’re looking for someone new. And I just wrote a little bit saying it's so important the person that now leads the NAS in Great Britain has to be awesomely Autistic, because then it's, it's true, then it's viable. And so I think, I shared a bit on various pages … email. And so if you want to write and say, it’d be really good if, if the NAS has somebody awesomely Autistic, because I think that's authenticity.
And so I love what I do with the NAS; it's another outlet for my passion.
And I love the educational side bit so people are no, no, no, no, you're wrong. Hey, look at this, this is so much better. This is so much more up to date. Have a look at this. Rethink about that and that's something I love doing a lot because it's happened to me over the past three decades plus.
Ginny: That sounds like very valuable work, and I absolutely love your insistence on Autistic representation within the organisation. And I also love the way you always say “awesomely Autistic”.
Tigger: I apologise for that. Did you hear me? Oh, it's just, it's, you know what, what fascinates me was, again, that passion in my soul was there for a reason I didn't know I am Autistically, awesomely Autistic. But, but wow, since last summer, it's like I've gone into overdrive. I, I cannot, I will not tolerate, if I said that correctly, misinformation, out-of-date information. And there is, there is so much out there, where, you know, even, you know, I work a lot with, there are some amazing parent groups in, in the county of Cornwall as well that I've, someone I've known for decades, too, and they go, “Yeah, we all knew you’re Autistic, Tigger,” and even, even with the conversation, you know, with other parents and individuals I know, you know, I'm still hearing things like, you know, “You can't be Autistic because …” You know, parents have been told, “Your son can't be Autistic because he's looking at me in the eyes. He's really quite communicative. You know, he's, he's, he's playing games with me, he's, you know, interactive, and he's keeping …” This is so out of date. And that's something I feel extremely passionate about is … One of the things I'm doing at the moment is there is a strategy board in Cornwall around, about autism. And one of the things I'm doing with my voluntary National Autistic Society hat on, is saying to this board of individuals, “Hi, great, how neurodiverse are you, because if you're not neurodiverse, then how can you be making decisions for those of us that are?” And we're going to work together on, on changing, which is really, really gorgeous and how it should be, yeah. So those are the things that I am, I’m passionate about but like I said, I was passionate about it before but literally since last summer it's like somebody’s turned the amplifier to eleven, yeah, and I’m off, because it's so important.
Ginny: So just reflecting on your advocacy work, what, what would you say that you're most proud of?
Tigger: Whoa. I've been taught by so many people, initially by parents, parents who were challenging me when I wasn't a parent myself what it's like to have a, you know, to have a son or daughter and to put their needs gorgeously first and so on. And then people I know have educated me over the years and so on and that's something that's meant an awful lot to me. And now with my growing understanding of, you know, Autistic culture, Autistic experience of identity and so forth, and I kind of mentioned it back then. It's what I'm most proud of, what I feel really passionate to do is to change people's viewpoints, to challenge people's ideas, is to challenge what they know about Autism, what they know about the Autistic experience because an awful lot of people I’m meeting do not … they are, a medical model, it's as simple as that, they are, they are, they are totally taught, even the 21st century, you know, you know, “Autism spectrum disorder”, “Autism spectrum condition”, yeah. Oh great, you come to us, you think your son or daughter's Autistic, great, we'll send you on a parenting course first. Excuse me? You know, even PDA, you know: “Oh no, PDA doesn't exist. It's not in the manuals. It must be your fault as a bad parent.” Oh! Did you know? And I think the thing, the thing I'm most proud of is, is, is I love teaching, I love talking – you might have gathered that – and I love it when I see people suddenly change, when they go, “Oh, I always thought that.” Oh no, no, no, it's not. I mean, one of the first things I do is I go through all of that and I, I don't, forgive me, I used, for some sessions I do I'll talk about, you know, I put ASD up, ASC up. I put a lot of other terms which are very outdated but very offensive. And people recoil: “You shouldn't be using that!” Really? Well, should we be using that? No, and this is why, you know. ASD, no. Autistic, yeah. And it's challenging individuals to rethink what it means to be human, rethink about what it means to be neurodiverse, or what it means to be part of a wonderful species that is neurodiverse in, in such gorgeous ways, but it's a yeah, yeah, I'm proud of just making people stop sometimes and think. There are loads of times that I've been teaching, and I pause and I've gone,
“And?” And then we go into discussion: “Well, I always thought that. I always thought … You mean, you mean, you mean people, Autistic people can have feelings, and they can be really nice.” Yeah, they can. Do you know what I mean? I've had those conversations with people over the years. “So you mean they actually can, can have empathy?” Yep, yep, yep. You know, all that stuff that's been shunted out, and you know from a lot of organisations across the planet, out of date, and what I love and what I think I'm most proud of is being part of a community that is challenging that and actively changing it because that is so important, because that is progression, that's the only way as a species we can progress with understanding and accepting all the variables of each other. And that's what I love doing. I love that, you know when you see somebody's face kind of go, and they go “Oh right, hadn’t thought of that.” And you see them thinking, that's wrong, that's wrong, that's wrong. I want to read that book, I'm gonna go on that website, I'm gonna look at this page, that's where I get a big, a big kick out of doing, and that and with a lot more to do, and along the way, meeting incredible people, and still learning and still being taught myself is gorgeous too. So very often I feel like I'm a conduit. And I'm passing on … you know that bit about standing on the shoulders of giants and that kind of stuff? I very often see something that is, you know, well, that's great and share it, or direct people somewhere, if it's good, get it, access it, use it. And that's what, that's what I love doing. And I'm very, very passionate about changing that narrative that so many people have that is so, so, out of date.
Ginny: Do you have any specific goals for what you want to accomplish in the future?
Tigger: We had a year ago, before, everything changed on our planet, I was thinking, yeah, okay, I'm doing conference work, and I'm doing this, and I'm doing that. And I'm going along okay. It's been cool; it's been seven years of being freelance. I like it, I love what I do, and it's fun. I love travelling on trains, I love going to coffee shops, all this kind of stuff I adore. And then all of a sudden, of course, there's that, boom of last summer, where all of a sudden my reality has changed. And with that change of reality, I'm changing my perspectives on what I thought I wanted.
And what I want to do in the future, I want to meet people – I’m looking for a polite way of saying this – I want that medical model to disappear. I want families to be respected when they go to any professional or any individual and say, my son, my daughter, my child. And I want, I want the minute, the minute, the minute, for some individuals the minute you mention the word “Autistic” or “ADHD” or “autism”, whatever, you have a preconceived idea of what that family is or that person is. And I want to be part of a group of gorgeous individuals, organisations across the planet that change that. And that's very much how I look at my little part of Cornwall, with that volunteer hat on, and think, right, what can I do here? And it is looking at the professional bodies that are in place, and helping them, working alongside them, to get them to accept what it means to be Autistic in the 21st century, that, that medical model has to disappear, and we have to take onboard current models of thinking, more accepting, more inclusive models thinking across the board. And I think, I mean, that's, that's driving me at the moment incredibly, and I mean, you're, you're supposed to have a lot of gorgeous friends who are awesomely Autistic and brilliant, and if you ask a lot of them, they will sometimes say I forget to work to earn. Does that make sense? I am so obsessed sometimes with doing that bit, I forget the bit where I’m supposed to go out and, and do the other stuff to keep the roof over my head, but the two do link together to me perfectly. I want to be part of a group of individuals that, that changes that narrative because that narrative hurts, people hurt, families, and it's so disrespectful. And it is changing, and it has to change. So that's, that's why I kind of see, I envisaged this before, I didn't, I've almost become political. Does that, honestly, I've almost become political. I was gonna say, does that make sense? I've become … There’s this drive all of a sudden, which wasn't there maybe two years ago, but is there now, and that drive is to get together the people, to get together in this gorgeous Autistic community, and, and make a difference to change those very, very very outdated perceptions that I see an awful lot sadly in schools, you know, education, professionals, workplaces, police, all that kind of stuff, helping those individuals to realise it's not what they've been taught.
If I may, there's a, I mean, there's a, some of the teacher training in Britain, the, you know, the input they get about neurodiversity is so, so small. And yet they come to it in their classrooms, and, you know, overflowing with neurodiverse individuals. What is going on? It’s that kind of stuff that is, yeah, I’m becoming quite passionate and I’m becoming quite political, I think, which I never was before, certainly political though, but none of that you know. No, this has to change and that's what's, what's driving me on incredibly in the moment.
Ginny: I absolutely understand that and we're right there with you, Tigger.
Thank you so much, Tigger, for your time, and thanks to our audience for listening to the fifth episode of Amplified. If you're not already part of our social media communities, please do join us online. You can find us on Facebook, Instagram, LinkedIn, Twitter and YouTube. And we also have a website, www.reframingautism.com.au, which has a treasure trove of Autistic-created resources. Thank you and goodbye.
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[Music intro: ‘Winter is here’ by Elliot Middleton for Premiumbeat, a delicate piano melody which creates a hopeful mood]
Ginny: Hello and welcome to our fifth episode of Amplified: Autistics in Conversation with Reframing Autism.
I’m Ginny Grant, an Autistic advocate, a writer, and Reframing Autism’s Communications Manager.
Today I’m thrilled to be chatting with Tigger Pritchard. Tigger is an awesomely Autistic Autism and Pathological Demand Avoidance advocate, trainer and consultant, based in England. Tigger has devoted the past thirty years to working with neurodivergent individuals in many capacities. He consults to individuals, families and organisations, sharing his extensive skills, knowledge and lived experience. And he’s the longest-serving Makaton – that’s keyword sign – tutor in the United Kingdom. He’s also involved with the National Autistic Society in the county of Cornwall. And he runs the Facebook page The Autistic Coffee Shop with Tigger Pritchard, which features a wealth of Autistic and professional resources, as well as an Instagram account and YouTube channel. And for anyone wondering, Tigger is his legal name.
For those of you who are new to this podcast series, Reframing Autism is an Australian-based not-for-profit organisation which is run by and for Autistic people and their families and allies. It is dedicated to creating a world in which the Autistic community is supported to achieve acceptance, inclusion and active citizenship. And we are all about nurturing and celebrating Autistic identity.
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Welcome to Amplified, Tigger!
Tigger: Oh, thank you so much. I laughed at the bit where you said, about Tigger being my real name. So many people think about it and don't ask. But I'm very candid. I, I, my birth name was Terry, way back in the 60s. They were a Welsh family, they expected a girl. My name would have been Sian. And I popped along a couple months early, but I never felt like Terry fitted me. I was named quickly on the spot because truly they thought I wasn't going to survive the evening. And then, years ago, people started calling me Tigger for a variety of reasons. It stuck, and I changed it. And many people do just look, this that kind of look where they think, is that his name? And thank you, but I'm so honoured to be, to be on this podcast, to see you again and that, thank you for the very, very kind, kind words.
Ginny: You're very welcome. So let's start with your Autism journey. Can you tell us a little bit about when and how you discovered that you're Autistic?
Tigger: Well, here you go. I was, am a professional in the Autistic world and have been for over 30 years and loads of places. But last summer, in a back garden in Cornwall, at my partner's house, I stood outside in the backyard. Actually I was sitting down having a cup of coffee – I like coffee – thinking, this isn't right. I couldn't, I didn't fit into the house. I was just, things weren't working out, and I just thought, what's going on? And after all those years as a professional, I suddenly sat down and I suddenly thought to myself and realised, I went, you're Autistic. That's why, that's why, that's why, that's why and it slowly dawned upon me. And I then saw my partner and said to her, and went, “Hi. I think we're having a complex time, I'm having a complex time because …” And she beautifully just went, “Okay.” And then, so really for me that solidification isn't even a year old yet. I've yet to celebrate my first-year birthday, so to speak. So it's new, but it's, it was, it started last summer, just thinking why I didn't feel like everybody else in the house, or why, I just, everything seemed to be, to be different from them. And really it was a lightbulb moment, for want of a better term, where I suddenly sat there went, Hang on a minute. This is why. And then since then, as the saying goes, almost everything – I've got a long journey to go – is making sense of not just the, the months I was in lockdown and that first lockdown, but also the years, the decades that preceded, and very much so making sense, which is, which is fascinating, interesting.
Ginny: So, what has it been like for you, only sort of just realising and embracing this part of yourself later in your life?
Tigger: Well, it's, there is that professional bit, where I thought to myself, hang on a minute, you'd been been working with, with neurodivergent individuals in the world of Autistic experiences and policy for years, you’ve only just realised? And also, the thing that fascinated me most was when I started to open up to people close to me and say, you know, people I’ve known in professional settings, people who have known me as friends for, for several decades, they were all kind of shocked to begin with. I was really nervous by how they were shocked, but they were shocked, not because I was saying, “I'm Autistic”; they were shocked because they went, “What, didn't you know?” And I was like, “What?” And they went, “Didn't you know?” And I went, “What do you mean, Didn’t I know?” And they would go, “We've known for years.” There was, there was a man who spoke to me, I think, for 25 years and he went, “The first day I met you, I just went, yeah, he's Autistic.” So, that did kind of knock me a bit, I must confess from a professional viewpoint. But what's it been like realising later in life? All of a sudden, huge parts of my life are making sense, whereas before they didn't, whereas before I might think it was, yeah, a mental health issue, where things didn't work out as planned, where sometimes I'd be saying and doing things and people's reactions were like, what's going on here? It just, it just begins to make to make sense, really. And what I’m on now is this amazing, gorgeous, complex, frightening, scary, beautiful journey of realising who I am, that, that self-awareness, that self-realisation of who Tigger actually is, who Tigger actually was and who I’m becoming.
There's also a lot of rethinking about who I am, not just personally but professionally as well. So a lot of things I've done over the past 30 years, a lot of training I've done, all the stuff I've delivered, I now look back and think, well, no, no, no, no, no, no, no, no, no, no. Because you know, that 30 years I've seen a lot of things change. You know, I can remember when I worked for a care provider in, in this county of Cornwall, I remember in 1987, as there were, I think, ten individuals living in this, in this house. I was told, these are the only ten people, those terms, with Autism, old terms, in Cornwall at that time. And I was like wow, okay. And you know, I remember standing at the premiere of Rain Man at the cinema in Cornwall in Truro, and, you know, everything that’s gone since. So I've been on that journey of huge changes, which I've embraced along the way thankfully. Also been educated by awesome friends and individuals and families and colleagues and so on. But now it's, it's, it's, it's, I mean, yeah, I’ve even got my first birthday, so to speak, yeah. So every day something new pops into my head or I read something, I research something or I'm doing a lot about masking at the moment. Oh wow, wow, that all makes sense. Yes, it's, and I am, my brain is all over the place at the moment with reading, with thinking, with digesting and, and a lot of internal thinking, but also you know the other thing is I'm going to, I'm going to open up a lot more about myself to the people that are very close to me. And that isn't easy, because I'm always afraid that we will have rejection. And also that honesty of, even on my YouTube clips I did a video about a couple of doors. My partner's house is open plan downstairs, and so you've got the living room in the kitchen. And every time one of those cupboard doors banged, it was like an explosion, was like a rocket. I was having a real PTSD reaction to that and it would accumulate over time until I would literally run out the house and sit on top of the garden for hours just to get away from those cupboard doors. And I very quickly purchased those dampeners you put on them so the doors close quietly. And I remember at the time saying blah, blah, blah, blah, “You know, I just don't like the noise, that’s all.” And then actually sitting down and saying, “Look, this is why. I recoil when that door bangs, I feel sick when the door bangs. I feel frightened when that door bangs. I have to get out when that door bangs. And realising that, thinking I've got really gorgeous accepting individuals around me, but it was, I mean, that's, that's vulnerability, isn't it? It's saying, look, you know, I, I am scared by a cupboard door banging to the extent that I need to get out the house after a while because I just can't take it anymore. So it's a, I'm loving it in some ways; it's hard work. But I wish I'd realised maybe at 45, or 35, because that might have been a bit of a difference, but I didn't, I realised it at 55, and I'm really glad I did.
Ginny: Never too late. So you've described “the world of Autism” as your passion in life. How did that passion develop?
Tigger: I moved from Wolverhampton, which is a place in the Midlands in England, to Cornwall back in the mid to late 80s, and I've known some, some individuals, neurodiverse individuals, up in that part of the country, moved down to Cornwall, did some volunteer work, and it all kind of started from there. But very early on, I knew where I felt safe; I knew where I fitted in, I knew … And this is it, this is why I know now. I would go into a room and I’d think, yeah, that's noisy, yeah, that cupboard door is horrible, yeah, that telly’s on too loud. Oh God, no, that chair’s not right or that light’s too bright or that light’s on. I mean, all that kind of stuff, yeah? I just get it. And I think that was when my passion came along. I think, to be brutally , I think I felt safe. I felt me, I realise that now. It also I went through in the schools and in the colleges. We knew it with the early years with the care provider in the workforce, I fitted in; I felt safe. So initially it was it was through my work, and I mean, even, even very recently. Well, in the past decade or so I was extremely passionate about people understanding the Autistic experience, and getting it right. And listen to my bit of passion but also, also at that point, you know, that time ago listening to the actual voice of, of Autistic individuals and learning from reality and their experience. And I think I just, I just felt safe. I look back at it now and I think, yeah, you felt totally safe, you felt totally you. I didn't feel like me anywhere else; I really felt like me in those classrooms.
I had a, a … the thing about safety, I had a family wedding several years ago. I was scared, I mean, I was scared, I was really scared, all these people I hadn’t met before; I was petrified. And then a young individual came in, a young neurodiverse individual came in. There I went. They’d all said, “Oh, you’ve got to meet Tigger, blah, blah.” I, I sat down on the floor with this guy, I chatted, I communicated appropriately and so on, and just that, in the meantime, I felt safe.
And that's why, and that's where I think the passion has come from, because it's me. So, you know, and recently that passion has grown, and I've met so many amazing families, individuals over the years that have helped me, supported me, taught me, re-educated me gorgeously and still are. And I think that passion just came from, it came from the fact that I felt, that's where I felt safe, that's where I felt I fitted in, and I realise that now; I didn’t then but I do now. And it is, it's, it's consumed, it's all consuming for me. If I have a very strong interest then this is it; this is what I want to do. This is what I love doing. And it's that, that drive to re-educate people at the moment, especially with their understanding of what the Autistic experience is, it’s huge and extremely important because so many people get it wrong for a variety of reasons.
Yeah, so the passion I think came from myself, the passion came from the fact that that's where I felt safe. All of a sudden, that's where I felt I could make a difference and I understood why somebody didn't like the environment or there was a sensory overload going on or the communication needed to be implanted, and so on and so forth. I just, I just fitted in, and from there, through this, yeah, this is what I want to do. And it just, it just … consumes me.
Ginny: Fantastic. And I can absolutely relate to having that really strong passion to re-educate, as well. So you have a particular interest in pathological demand avoidance, or PDA. This is an autistic profile that's only just gaining recognition across the world. Can you explain briefly what PDA is for our listeners who might not have come across that, that term?
Tigger: It's, it's, well, it's been around since the 80s in terms of use, and looking at it, she was a, an individual in England, who was working with a range of individuals who were awesomely Autistic and began to think to herself, hey, I’m meeting people, it's like autism, but, and silly people go oh it's like Autism, but, and though. The majority of the planet understands what it means to be Autistic in an ever-changing flow, because it's changing very quickly. We understand that it's, you know, being Autistic is dimensional and you know, you’ve got overlapping differences and challenges and strengths that present differently and so forth. PDA is relatively new. Very new, really, if you look at the 80s – the 80s only seems like yesterday – that’s my age coming out again.
See you've got this. You've got pathological. So, you got pathological demand avoidance, so I think to myself, right, let's break this down a bit. What does pathological mean? And very often people get stuck on the pathological bit, but they shouldn't. It's like debating about whether or not it's the right term to use but it's there, and it works. And I say to myself, look, pathological shows that these actions that we are seeing a completely out of control in the individual. When you look at the demand for it and you think, hey, think of a demand, think of any demand, think of an external demand, an indirect demand, an implied demand. I mean, people, internal demands: the need to eat, you know, the need to self-regulate, to go the toilet. These are demands that sometimes we don't see, for individuals, because we just, we expect them to be there. We don't understand the pressure they can put upon somebody. And you've got the external demands of our routines, get up, go to school, go to work, eat this, sit there, so on and so forth.
And then you've got the avoidance bit, and I say this strongly again and again and again to people, the avoidance bit is, I cannot do this. So, I often look at PDA as a … and hey, I learn for PDAers – oh, there are some awesome ones out there. There's this need. It's a huge response to threat and anxiety, and therefore you have that need to be in control, to reduce that incredible threat and anxiety response to all those things that are going on that are out of your control, both internal and external.
I mean, if, if, if I may say, I may say, just for a moment, you know, let's have a bit of fun if you are okay in taking part in this? So what I'd love to do now is, I'd love to do some math questions, is that all right? I love maths, right? So what I'm going to do is, is ask you some math questions. I'll go through them on air, we'll keep them in the podcast, and you just answer them verbally, is that all right?
Ginny (laughing): Not happening!
Tigger (laughing): Right, okay, I'm sorry, that's not gonna happen at all, yeah, but I do that very sneakily, very cheekily, sometimes to get people like inside of, all of a sudden your anxiety levels have gone through the ceiling, if I can use that term, oh, your face was a picture, it was lush, yeah.
But what I'm trying to show with that is I'm trying to show that that anxiety level is huge. All of a sudden, it’s only a small example, all of a sudden, you were not in control of what was happening, you were faced with something that made you extremely anxious and extremely frightened, and you wanted to get control and the only way you could get control there was to say, “No, it ain't happening.” Forgive me for that.
Ginny: It's a great, it's a great example, and you did happen to pick a subject that I really struggled with!
Tigger: Sorry, I actually, I actually … Hey, I’m a closet physicist, fond astronomer, all the rest of it, but I can't do math for love and money, so if somebody did that to me I'd run out the room. But I've done that, over many years trying to get across, you know, an understanding of how quickly, how devastating that response can be for people, if you multiply it by several thousand. I love that. I've had some people go, I've had people go, “No, I'm sorry, you're not,” very forcefully back at me. And then I do what I've done now and go actually, sorry. Calm down. Do you know what happened then? And it is just that realisation, so I … There's the PDA Society in Great Britain who I adore parent led, professional led, PDA led, they have a wealth of information about what, what PDA is, and in Australia and New Zealand, there is PDA ANZ, which is a Pathological Demand Avoidance Australia and New Zealand, which are found on the PDA website. Look at those places, and you have a young individual who is on the Autistic profile, and then you've got a list of criteria such as, you know, obsessively, persistently, dramatically, pathologically resisting ordinary demands, ordinary demands brush your teeth, you know, stand up. Sit down. You've got the bit about, you know, being sociable but that's sociability that's there for somebody is really, there's a term “socially strategic” and another friend of mine said, “Yeah, they’re manipulating the situation to reduce the demands”, yeah. And you've got a, you know, there's aspects here, this is on the PGA website and other places as well, you get a bit about the, the sudden emotions and mood swings suddenly switching. And you often hear the term Jekyll and Hyde and those emotions suddenly switch in bang, just like that. And it goes on from, you know, being comfortable in role playing, pretending, focusing intently sometimes on people, but that need for control it definitely is an incredible response, an automatic response to threat and anxiety, and that's why I often say to people, “You know, it's not … PDA is not “I don't feel like doing this today”, PDA is not having power games, PDA is not have a bit of a giggle here. PDA is driven by a huge fear around anxiety and threats that those demands give, both internally and externally. And the response is that. There, there are some great PDAers out there, some great YouTube clips. As I've said already, I adore the PDA Society; it's one of the best websites I know with continually updated information. And there's a lot of, wealth of stuff out there but it's, it's something that I have a passion about. And I think I've been passionate about it because so it's not in the diagnostic manuals. I'm not saying I love the diagnostic manuals either, that's, that's a big one for me – don’t want to go there, at the moment – but it's not in the diagnostic manual so you have so many professionals, the families, individuals make that decision straightaway, who will go straight to, I'm sorry, bad parenting, you know, environmental stuff all the rest of it, without looking at the reality of that neurotype, which drives me rrrrrrr! My apologies. And it's, that’s something I feel very strongly about at the moment you have a lot of awesome individuals and families that have talked to me over the years and that I'm meeting, who, you know, at that first reaching out for help are dismissed straightaway, and that's something that has to stop. And so, you know, PDA Society, gorgeous, and myself and some other people out there who are continually fighting battles to make some professionals, not all, understand that the world of PDA does exist. It’s that, there's that lovely quote and I won't use the full words but it's a, it's an image I've shared some times and it's about, it's about Pluto been discovered I think in the 1930s by Clyde Tombaugh – I'm pretty bad at pronouncing names – but it was discovered in the 1930s, and somebody writes at the bottom, Yeah, I'm pretty sure it was there before then. Yeah? Just because it wasn't discovered doesn't mean it didn't exist. The same goes for, you know, being Autistic. The same goes for PDA, pathological demand avoidance. But it is, it is a fascinating subject because it's new. It's very often misunderstood. But the thing I dislike intensely at moment is so many people sometimes just ignore it, say it doesn't exist because it's not in those manuals. But just think further than that. Those manuals are not perfect. And it's, you know, get to the websites I've mentioned. There’s a, there's a huge wealth of information there about pathological demand avoidance.
Ginny: Can you tell us a little bit about your involvement with the National Autistic Society?
Tigger: The National Autistic Society is Great Britain. I first became involved in it about 20 odd years ago when I was a lecturer at a local college. I came to the meetings to learn, really. The NAS is a, it was set up initially by parents back in the 60–70s, initially parent led. And it, was one of the first organisation of its kind in the planet to, to look at raising awareness around individuals who are awesomely Autistic and their families. Very recently, about … I had a teaching career that came to an end about seven years ago because I decided I'd had enough and I went freelance, and literally coinciding with that, and doing the other stuff that I do, I was approached because I've known the National Autistic Society group in Cornwall for a long time, and that it was, it was in difficulty. It's a volunteer group. We are volunteers. And I, you've got to give back to the planet, if that makes sense. You have to. And I thought, Hey, I'm doing this bit as a professional, I'm doing this bit as freelance and so on. But I also need to do this. So I got involved again but in a much larger capacity than I ever have before. I was originally vice chair, and then, the then-chair had to leave because of other responsibilities, and I just took over the position of, of chair very kindly.
We're very small group. And we, we do what we can in this very big county of Cornwall – there's only a handful of us. But, but even then, even then before I knew about being awesomely Autistic, you know, there's the, you know, that awesomely Autisticness is there my family and … but even then, I was very passionate about the fact that the National Autistic Society in Cornwall had to have a genuine, authentic Autistic voice, which at that point, I didn’t realise part of that would be me. So I tried to get involved individuals who were either diagnosed – forgive that term – identified, self identified as Autistic as part of what we do. I set up a Facebook page, which is another Facebook page I run. And just equally for families and individuals in Cornwall, and it was about raising awareness and also raising awareness of what it is, what being Autistic means in the 21st century, not the 20th century, not that medical model which so many people still get. This is, this is, this is where the passion comes from: I am fed up of … I mean, a friend of mine shared some up-to-date online training the other day that, that they are doing to gain a module in, in Autism awareness and whoa, you know she wrote a complaint straightaway to this, to this body, saying, well, you're using language that's 20 years out of date, you're using diagrams that are really, you know, using terminology that is very, very horrific for some people, and there were puzzle pictures, puzzle pieces everywhere. And that's going to change. So, so yes, so part of the reason I got involved with the National Autistic Society in Cornwall, and what I'm doing now very much so, is to make sure there's a balance, and to make sure that there is a strong representation of authentically Autistic voices involved in this voluntary group in Cornwall, and that then pushes us to develop in terms of what we do regards to what we can do in this present moment in time, which is mostly Zoom based and Facebook based, to educate people. So, you know, amazing stuff from, from your pages I share on to the NAS Facebook page, I make sure with the others that are there, that we share really up-to-date information. As I'm sure you know the knowledge of some individuals of some family members through no fault of their own, of some professionals through no fault of their own, is really out of date. And so I'm hoping having worked with some of the great people on the committee to bring the knowledge of what it means to be Autistic in the 21st century to the people of Cornwall. There’s some amazing people out there; it's just getting that knowledge base across to everybody. So the NAS, it's a volunteer position, I love it.
I love it again, because it's that changing people's attitudes, it's that, you know, like I said that, that, that friend of mine joined this and paid for this online training course to gain some qualifications as part of their job, and boom, it's horrifically out of date. And yet, this is what people are getting if you go to some areas and you say, boom, you’re getting very out-of-date stuff.
I mean the, the NAS had their AGM last week, and I, virtually of course, joined in. And I found out that the present chair of the NAS in the country, of Britain, is leaving after ten years, and they’re looking for someone new. And I just wrote a little bit saying it's so important the person that now leads the NAS in Great Britain has to be awesomely Autistic, because then it's, it's true, then it's viable. And so I think, I shared a bit on various pages … email. And so if you want to write and say, it’d be really good if, if the NAS has somebody awesomely Autistic, because I think that's authenticity.
And so I love what I do with the NAS; it's another outlet for my passion.
And I love the educational side bit so people are no, no, no, no, you're wrong. Hey, look at this, this is so much better. This is so much more up to date. Have a look at this. Rethink about that and that's something I love doing a lot because it's happened to me over the past three decades plus.
Ginny: That sounds like very valuable work, and I absolutely love your insistence on Autistic representation within the organisation. And I also love the way you always say “awesomely Autistic”.
Tigger: I apologise for that. Did you hear me? Oh, it's just, it's, you know what, what fascinates me was, again, that passion in my soul was there for a reason I didn't know I am Autistically, awesomely Autistic. But, but wow, since last summer, it's like I've gone into overdrive. I, I cannot, I will not tolerate, if I said that correctly, misinformation, out-of-date information. And there is, there is so much out there, where, you know, even, you know, I work a lot with, there are some amazing parent groups in, in the county of Cornwall as well that I've, someone I've known for decades, too, and they go, “Yeah, we all knew you’re Autistic, Tigger,” and even, even with the conversation, you know, with other parents and individuals I know, you know, I'm still hearing things like, you know, “You can't be Autistic because …” You know, parents have been told, “Your son can't be Autistic because he's looking at me in the eyes. He's really quite communicative. You know, he's, he's, he's playing games with me, he's, you know, interactive, and he's keeping …” This is so out of date. And that's something I feel extremely passionate about is … One of the things I'm doing at the moment is there is a strategy board in Cornwall around, about autism. And one of the things I'm doing with my voluntary National Autistic Society hat on, is saying to this board of individuals, “Hi, great, how neurodiverse are you, because if you're not neurodiverse, then how can you be making decisions for those of us that are?” And we're going to work together on, on changing, which is really, really gorgeous and how it should be, yeah. So those are the things that I am, I’m passionate about but like I said, I was passionate about it before but literally since last summer it's like somebody’s turned the amplifier to eleven, yeah, and I’m off, because it's so important.
Ginny: So just reflecting on your advocacy work, what, what would you say that you're most proud of?
Tigger: Whoa. I've been taught by so many people, initially by parents, parents who were challenging me when I wasn't a parent myself what it's like to have a, you know, to have a son or daughter and to put their needs gorgeously first and so on. And then people I know have educated me over the years and so on and that's something that's meant an awful lot to me. And now with my growing understanding of, you know, Autistic culture, Autistic experience of identity and so forth, and I kind of mentioned it back then. It's what I'm most proud of, what I feel really passionate to do is to change people's viewpoints, to challenge people's ideas, is to challenge what they know about Autism, what they know about the Autistic experience because an awful lot of people I’m meeting do not … they are, a medical model, it's as simple as that, they are, they are, they are totally taught, even the 21st century, you know, you know, “Autism spectrum disorder”, “Autism spectrum condition”, yeah. Oh great, you come to us, you think your son or daughter's Autistic, great, we'll send you on a parenting course first. Excuse me? You know, even PDA, you know: “Oh no, PDA doesn't exist. It's not in the manuals. It must be your fault as a bad parent.” Oh! Did you know? And I think the thing, the thing I'm most proud of is, is, is I love teaching, I love talking – you might have gathered that – and I love it when I see people suddenly change, when they go, “Oh, I always thought that.” Oh no, no, no, it's not. I mean, one of the first things I do is I go through all of that and I, I don't, forgive me, I used, for some sessions I do I'll talk about, you know, I put ASD up, ASC up. I put a lot of other terms which are very outdated but very offensive. And people recoil: “You shouldn't be using that!” Really? Well, should we be using that? No, and this is why, you know. ASD, no. Autistic, yeah. And it's challenging individuals to rethink what it means to be human, rethink about what it means to be neurodiverse, or what it means to be part of a wonderful species that is neurodiverse in, in such gorgeous ways, but it's a yeah, yeah, I'm proud of just making people stop sometimes and think. There are loads of times that I've been teaching, and I pause and I've gone,
“And?” And then we go into discussion: “Well, I always thought that. I always thought … You mean, you mean, you mean people, Autistic people can have feelings, and they can be really nice.” Yeah, they can. Do you know what I mean? I've had those conversations with people over the years. “So you mean they actually can, can have empathy?” Yep, yep, yep. You know, all that stuff that's been shunted out, and you know from a lot of organisations across the planet, out of date, and what I love and what I think I'm most proud of is being part of a community that is challenging that and actively changing it because that is so important, because that is progression, that's the only way as a species we can progress with understanding and accepting all the variables of each other. And that's what I love doing. I love that, you know when you see somebody's face kind of go, and they go “Oh right, hadn’t thought of that.” And you see them thinking, that's wrong, that's wrong, that's wrong. I want to read that book, I'm gonna go on that website, I'm gonna look at this page, that's where I get a big, a big kick out of doing, and that and with a lot more to do, and along the way, meeting incredible people, and still learning and still being taught myself is gorgeous too. So very often I feel like I'm a conduit. And I'm passing on … you know that bit about standing on the shoulders of giants and that kind of stuff? I very often see something that is, you know, well, that's great and share it, or direct people somewhere, if it's good, get it, access it, use it. And that's what, that's what I love doing. And I'm very, very passionate about changing that narrative that so many people have that is so, so, out of date.
Ginny: Do you have any specific goals for what you want to accomplish in the future?
Tigger: We had a year ago, before, everything changed on our planet, I was thinking, yeah, okay, I'm doing conference work, and I'm doing this, and I'm doing that. And I'm going along okay. It's been cool; it's been seven years of being freelance. I like it, I love what I do, and it's fun. I love travelling on trains, I love going to coffee shops, all this kind of stuff I adore. And then all of a sudden, of course, there's that, boom of last summer, where all of a sudden my reality has changed. And with that change of reality, I'm changing my perspectives on what I thought I wanted.
And what I want to do in the future, I want to meet people – I’m looking for a polite way of saying this – I want that medical model to disappear. I want families to be respected when they go to any professional or any individual and say, my son, my daughter, my child. And I want, I want the minute, the minute, the minute, for some individuals the minute you mention the word “Autistic” or “ADHD” or “autism”, whatever, you have a preconceived idea of what that family is or that person is. And I want to be part of a group of gorgeous individuals, organisations across the planet that change that. And that's very much how I look at my little part of Cornwall, with that volunteer hat on, and think, right, what can I do here? And it is looking at the professional bodies that are in place, and helping them, working alongside them, to get them to accept what it means to be Autistic in the 21st century, that, that medical model has to disappear, and we have to take onboard current models of thinking, more accepting, more inclusive models thinking across the board. And I think, I mean, that's, that's driving me at the moment incredibly, and I mean, you're, you're supposed to have a lot of gorgeous friends who are awesomely Autistic and brilliant, and if you ask a lot of them, they will sometimes say I forget to work to earn. Does that make sense? I am so obsessed sometimes with doing that bit, I forget the bit where I’m supposed to go out and, and do the other stuff to keep the roof over my head, but the two do link together to me perfectly. I want to be part of a group of individuals that, that changes that narrative because that narrative hurts, people hurt, families, and it's so disrespectful. And it is changing, and it has to change. So that's, that's why I kind of see, I envisaged this before, I didn't, I've almost become political. Does that, honestly, I've almost become political. I was gonna say, does that make sense? I've become … There’s this drive all of a sudden, which wasn't there maybe two years ago, but is there now, and that drive is to get together the people, to get together in this gorgeous Autistic community, and, and make a difference to change those very, very very outdated perceptions that I see an awful lot sadly in schools, you know, education, professionals, workplaces, police, all that kind of stuff, helping those individuals to realise it's not what they've been taught.
If I may, there's a, I mean, there's a, some of the teacher training in Britain, the, you know, the input they get about neurodiversity is so, so small. And yet they come to it in their classrooms, and, you know, overflowing with neurodiverse individuals. What is going on? It’s that kind of stuff that is, yeah, I’m becoming quite passionate and I’m becoming quite political, I think, which I never was before, certainly political though, but none of that you know. No, this has to change and that's what's, what's driving me on incredibly in the moment.
Ginny: I absolutely understand that and we're right there with you, Tigger.
Thank you so much, Tigger, for your time, and thanks to our audience for listening to the fifth episode of Amplified. If you're not already part of our social media communities, please do join us online. You can find us on Facebook, Instagram, LinkedIn, Twitter and YouTube. And we also have a website, www.reframingautism.com.au, which has a treasure trove of Autistic-created resources. Thank you and goodbye.
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