From Pathology to Neurodiversity: A Conversation with Dr. Wenn Lawson and Annie Etherington

Okay I think we'll start, it's at 7 30 and people will be arriving as we speak but I I think it would be good to start the session now.

Welcome everybody to this wonderful event this evening my name is Karen Guldberg and I'm Director of the Autism Centre for Education and Research and I'm also head of department for the Disability Inclusion and Special Needs Department, and we're absolutely delighted to be hosting this event where we're going to have a conversation between Wenn Lawson, Dr Wenn Lawson, and Annie Etherington and they're going to talk about neurodiversity and they're going to have a conversation about from pathology to neurodiversity, a conversation about autism.

I think it's going to be absolutely fascinating. Wenn is an autistic lecturer, psychologist, researcher, advocate, writer and poet. a very, very talented person who's been breaking new ground for a long time in the field of autism studies. And Annie has an absolute wealth of experience within autism as a teacher, as an outreach teacher, as a trainer, as an educator. We are very, very fortunate that both Annie and Wenn work with us in the Autism Centre for Education and Research on the Autism Children program.

Now we also have our lovely chat facilitators here, so we have Miranda Andras and Lila Kosivaki who are going to be keeping an eye on the chat and interacting with you there in case you have any questions. And we also have Barbara Sandlin who's going to keep an eye on the Q&A's. Now, what we would like you to do is if you have questions for the panellists, or any comments you want to make to the camera panellists, please put them in the Q&A bit of Zoom. So on the bottom of your Zoom screen you will see a Q&A icon so please put questions and comments there for the panellists and the panellists will start, will address them, at the end of their talk, after their talk. If you just want to chat and say good evening to us from Abu Dhabi for example, which I see one of the people has posted something on the chat, then you post those comments in the chat and if you're having any problems with anything please let us know through the chat function as well.

So, before I say anymore then I think I'm just going to hand over to Annie and Wenn for what is going to be an absolutely fascinating discussion, I'm very confident about that.

Thank you, both of you. Thank you. I'm very happy, Karen, that you're very confident this is good. This first slide from pathology to neurodiversity, you can see some people all sharing information and when Annie looked at this she thought yeah, they're sharing information but they're not kind of really communicating because the colours don't match each person's mouth. When I looked at it I saw, I didn't see that bit, I saw the fact that there was a person down on the right there who's not talking at all and that made me think of how, throughout history, as autistic people we have not had a voice of any nature at times, whether we can talk verbally through speech, these days people type in all sorts of other ways but traditionally that has not been so. Just a little bit about me, I am one of four kids, there's only three of us in this picture because my brother was nine before I was born. I was born female, mum I am a trans guy, but in this picture, which I like because I'm wearing pants shorts and I was dressed throughout my life usually in trousers or pants, I never liked dresses and things like that but I grew up which is amazing and developed from somebody that seemed to have no say in things to somebody who's more likely to be recognized and heard. When I was two years old I was diagnosed as educationally subnormal, that's the exact term that was used for me, we don't use that sort of language anymore. Not much was expected of me I was born in the UK in Colchester in Essex and I grew up in England for much of my life. I didn't leave England to come to Australia until I was 30. So for most of my life during School, which lasted between the ages of 6 and 15, I spent my education in what we called the D Class, and in my thinking that was always D for dance. I had no sense of who I was of, who I am, all sorts of things happened to me through those years. I was misdiagnosed at 17 as being schizophrenic and that meant being in and out of mental hospitals for 25 years on lots of antipsychotic medication. I was very at home in church life, I eventually married a young man, and then I was as a female I married a young man when I was close to 20 and by the time I was 30 we had four kids. When we left to come to Australia as a 30-year-old, you can see that picture down the bottom there with me and our four. Three of those young people are diagnosed as autistic and it was very common for us sitting around a table, for example, to eat not to face one another but just to sit in a bit of a line because looking directly in someone's face was quite uncomfortable. I returned to high school when I was 38, to complete here in Australia you have 11 and 12, that's the last two years of high school, and nobody expected me to be able to do that and certainly did not expect that I would go to university. So I did well at high school, got a high enough grade to apply to study psychology and social work and pastoral care, how about those three things for an autistic person, not expected, hey. And I was 42 years old at that time. Before we left Australia, this is a picture taken at a house called Leith Vale in Ockley, recently rebuilt I believe, and had a big mulberry tree in the garden that the kids loved, but here I am with our four uh the lass standing next to me is now my wife, she was currently the au pair girl, yes, I did run away with au pair girl, I think it was the other way around. Anyway, top right-hand corner of your screen you can see the first boy that was sitting on the tree, all grown up with his little girl and she's autistic. Katie, you can see at the very bottom of the screen with that older boy, Guy, and their three kids. And my three grandchildren in the middle is Tim, he's the lad in the bigger picture sitting on my knee. These are all autistic young people. Maddie, who has the brownie rusty jumper on was killed in a car accident, so there's a picture of him down there because he's still with us not physically but just to be remembered. So all of us grew up, all of us apart from Maddie, who was very dyslexic and had ADHD, are autistic and, increasingly funnily enough, although I don't know if that makes sense, we're all ADHD as well. And ADHD is all about attention and they call it … talk about deficit of attention with all that hyperactivity, but sometimes it's more like we over attend and we can't switch our brains off. So, this was me and my beloved getting married as a same-sex couple and lots of lots of colour and wonderful things. And on the right, it says ‘The young man I might have been’. And I sometimes do ponder had I not been born cis gendered female and had been, had known at the time that I was male. I always had lots of curly hair, so I quite like that image. I love birds and all animals, you can see the picture down the right hand side of the dog who lives next door, so I get my doggy fix by talking to her through the hole in the fence. In the middle there's Queenie, that's our pussycat, currently at the vet, hopefully coming home this morning, and above that I'm absolutely in love with this little eagle who I was told by the keeper seemed to love me back, so any thoughts of the beak and the claws I had none, I just adored her. This picture in the middle is my PhD party 2009, and it's there to show you guys because as we're talking about history and travelling through time, and I am a time traveller by heart Dr Who absolutely, then you can see that I graduated from seemingly a two-year-old with an intellectual disability, not talking until way past my fifth birthday, to having a PhD, which nobody thought possible. And just because you might not be able to talk certainly does not mean that you can't think. We need to think of other ways to communicate with people, I think talk is cheap, really, anybody can do that, so thinking beyond that has come a long way from those old days where people were expected to talk and not even allowed to sign, yeah, those times have changed. Some more images of family, Home, friends, sometimes people think if you're autistic you don't want friends or you're not very social. You know, when I grew up here in the town of Warnervale, where I live, that top right-hand, left-hand corner, you can see a volcano with the water inside an ex volcano, it's not alive anymore, this is where near where I live, and where I live it's common as autistic people that we gather together and honestly sometimes you can't shut us up, we have lots to say because we're amongst a group of people where we're welcome, we're amongst people who accept who we are and that makes life very different. So, apart from the picture down the bottom on your left-hand side where I'm standing with my cousins in Bath in Somerset, oh Avon now I think it's called, everybody else in this picture is autistic. And to hit just a couple of posters, I was employed by the South Australian government to create resources for schools, and as well as go into schools, and this is just to show, at the very top of the picture, there on those slides it says nothing about me without me, nothing about me without me. We've come a long way where people didn't listen or notice us as autistic people because they thought that that we couldn't contribute and we certainly can in a million ways, but it shouldn't be things being done to us it should be with us, it should be nothing about me without me. Thank you so much, Wenn, for starting us off. So, it's my turn now, I'm Annie and when Wenn and I were talking about this discussion we were going to have with you all, we thought it would be helpful if we looked together at our own stories and the points where they perhaps intersected with autism. So, from my side, I was born 68 years ago and my sort of conscious relationship with autism probably started when I was 18 and it was accidental, in a sense, I was taking an unplanned gap year or two before going on to university and saw a job that looked quite interesting, they were asking for an unqualified teacher to work in a long stay hospital. I had no idea what any of that meant, I just thought it sounded interesting. So this is what it meant, this is one of the villas of the eight that were in this particular long stay hospital, which at the time were regarded as innovative, believe it or not, because they weren't one single building with long corridors, but instead, these eight different villas and they were scattered about these green leafy grounds in Surrey and accommodated hundreds and hundreds of adults who were living there permanently. So, I got the job, I'm not entirely sure how, but it tells its own story that they were willing to give this important job to an 18-year-old, and I started there in 1970. It was called, you know Wenn's already touched on the terminology, it was called a subnormality hospital and I had a class of 23, mostly young adults, there were a few adolescents also in the group. And really, I was 18, I knew nothing about Anything, but I was allowed to have this class on my own and within that group of 23 young people there were a group, maybe six to eight young people, who I found really compelling, that they had a very distinctive style in terms of their communication, and I was very drawn to this particular group. And in fact, they had such an impact on me that I changed all my plans and instead of doing what I intended to do, I decided to train as a teacher and I scoured the universities and colleges for anywhere where I could train where you could also learn about special educational needs. although they weren't called that then. I did find somewhere and so I did a four-year degree in special educational needs and out of four years there was one day where we had a one hour lecture on this rare diagnosis which was called autism. So everything they thought we needed to know on this specialist course was covered in an hour. But in that hour I realised with growing excitement that this was … this described this this group of young people that I found so interesting and so loved and enjoyed being with. I had no idea that any of them were on the spectrum because the language of the time that I was exposed to were these sorts of words, so this was how my wonderful young people were described in terms of their files, the very few that I got to see, and the way the staff described those individuals. So that was the language of the time, so this was 1970. Eight years before I started there, this consultant psychiatrist had written a paper in which he said this. ‘Today one sees less use of the terms Imbecile, idiot and severe subnormality… but it still occurs too frequently for comfort.’ That was eight years before I started working at that hospital and those that terminology was common. It was nearly three decades later before that hospital was shut and the residents moved out into community homes, but just to give you a sense of the place, these were after it was abandoned which wasn't until you know well into I think about 2003 or four. This is what the wards looked like, this is after it was abandoned, but it gives you an idea of the place, and it was in 1995 that they actually moved to shut down this particular hospital, it took another 10 years for it to happen. And in 1995, even though there was a push to close it, there was still over 500 people living there. So that sent me on set me on my path and thinking about language and the terminology we use now to talk about those on the autism spectrum, it still remains quite controversial and it's still a process we're all engaged with. And I just have here on the screen for you to see two different research projects that explored this, the language that we use when we talk about those individuals who are on the spectrum. And on the left in that blue, purply blue, um you'll see a project that was done in this country four years ago where this was from CRAE based at London University, they did a very interesting investigation where they invited both individuals on the spectrum, their carers or parents, and professionals, and friends involved with autism, about the terminology they like to use when talking about individuals on the spectrum. It wasn't conclusive at all but something that emerged very strongly from this investigation was that for the autistic population who participated, and it was a good number there were about 500, they generally preferred identity-first terminology, so, a description such as autistic adult, autistic person. For the professionals and for parents there was a preference for person-first terminology, so, a child with autism, an adult with autism. Now, if we look over on the right of the screen, this piece of research was undertaken in Australia, only involved autistic adults, there are 198, I think, participated, and this is just an element I've taken from their study. You'll see that there are … they've ranked these terms and the top three, in terms of preferred terminology, aligned with the adults who participated in the study in the UK. So, autistic, on the autism spectrum and autistic person were preferred terminology, and at the bottom you'll see the language that was less preferred. I want to just for a moment do a whistle stop tour with you, putting this into some kind of historical context. So, if we go back in time to 1944 with the Education Act, this introduced this terrible term ‘ineducable’ and with that terminology then came a barrier to accessing education for anybody who attracted that label. By 1959 the Mental Health Act used the term subnormal and severely subnormal, and I was working in a severe sub-normality hospital and this was the label that that one was saying he was given at only two years of age. Because of that ineducable label there was a lack of access to many services, including education, and it wasn't until 1967 that Stanley Segal kind of led us … championed the cause of no child being ineducable. And this was then picked up and reflected in legislation when in 1970 the Education Act made education accessible and available to those children who had been deemed ineducable, but having said that I was working in 1970 in that hospital where certainly education was not offered at the level it would be in a mainstream school, for example. And that led us to the late 70s, the the Warnock Report, which really championed the idea of greater inclusion for pupils with special educational needs, and although Mary Warnock has kind of revived some of her thinking about that early report, I think this quote at the bottom from an observer, Webster in 2018, reminds us of something very important that it achieved, it provided the first major challenge to the medical model of disability and popularised the term ‘special educational needs’ and consigned the most pernicious labels to history. And in the wake of that in the 80s When … 1981 and it was implemented in 1983, the Education Act was passed and this embraced some of those ideas from the Warnock Report, that children should be educated in mainstream schools or classes wherever possible. And this is relevant of course because for a long time there was a way that autism was almost subsumed within this learning disabilities, special educational needs language and so all of these elements, or they're not specific to autism, certainly impacted on autism. And then something very powerful that happened in the mid-80s was the uprising really of a group of people who had had no voice in their education up to that point, and that was the development and growth of the People First Movement, made up of many individuals with learning disabilities, who created for themselves their own self-advocacy movement, really demanding that their views be taken into account. And as a body they championed this description ‘people with learning difficulties’ which for them was a very important recognition of where they had been and where they were now. And I just, before I moved back … hand back to Wenn, I just want to say something about how we can see just in this whistle stop tour, the dynamic nature and organic nature of language, that it does change across times and it reflects something important I think in terms of our development as a society. There is an ongoing debate about the terminology we use in relation to individuals on the spectrum and there are different perspectives we need to be conscious of as we go on with our exploration tonight. Now, we have a medical model which is going to describe somebody in terms of their diagnosis, there's a social model which is going to focus more on the barriers that society creates that can inhibit inclusion, and along with that we have that drive for person-first language, and then we have sort of the newcomer almost to the block, the neurodiversity model which focusses instead on neurological difference and the reframing of that difference as a strength and reclaiming the diagnosis as integral to identity. and Wenn I think is going to say much more about that, so I'm going to pass on to him. Absolutely, and one of the things that has always come to mind when I've been referred to as somebody with autism, it always seemed really strange because if I'm with autism, a bit like a man with his dog, I can be without it, and for a long time because of my literal thinking I really struggled with that one because I knew I couldn't be without being without autism is like me being without who I am. So, I'm very happy to talk about identity-first, I know that um some people don't feel that way and I think the best thing we can do is to check in with people and ask them, and actually being called by my name is just lovely. So, this definitely has changed over time and even terms like Asperger's which became a thing in in the mid-80s and 90s, and then when the new diagnostic manual, the DSM-5 came out they removed that term, and I've had people say to me so they've taken away Asperger's does that mean I'm gone, no you're not gone so there are still people who like to call themselves Aspie and think of themselves as having Asperger's. I'm not one of those people, I'm an autistic person and I'm happy with that, but we need to recognise that we are all different and it's respectful and just common sense to check in with somebody how they feel. I really dislike the term high and low Functioning, that used to remind me of a washing machine, somebody I think said that one of the terms on their dryer is normal, anyway high and low functioning I totally dislike, it's very ableist, it implies any person who differs from the mythical, it is a myth ‘normal’ is somehow less than. And those who have obviously higher support needs are less capable than those who need less support, and this just is not so. Another thing you'll hear a lot of autistic people saying is that we move between having more needs and needing more support, to having less needs and less support, sometimes in the same hour or in the same day. So, it doesn't make a lot of sense but just the terminology will predispose us to how we think about somebody, thinking about somebody as low functioning means we're not really going to invest in them as a person and yeah, it just makes me really cross, I really dislike those terms. I am not a puzzle, I'm a person and that's because for a long time the puzzle piece represented autism, it was kind of a universal sign, and again, just thinking of us as a puzzle a lot of people aren't even going to bother because they don't like puzzles. So, it's not useful. Yes, autistic abilities fluctuate a lot and complete … can be completely different on different days or at a different time, and affect different abilities, this is in relationship to that terminology of high and low functioning. Some terms reduce the person to a shorthand of the functioning label, rather than seeing them as an individual and addressing their individual needs. Such a long way from those pictures Annie showed us, the hint of working with the people that she worked with and I was in, very likely, one of those long-stay hospitals in Brookwood at the time, which is now I think in Surrey which has become housing for older people. Next slide, Annie. Thanks Wenn. For a moment we're going to move on to broaden the conversation and looking at the impact of diagnosis and the language of diagnosis. Wenn's referred to the DSM-5, there's also the ICD-11, both of these are international diagnostic manuals, if you like, they describe the features of various diagnostic diagnoses including autism. Necessarily, because it's medical, there's a very precise language that's used but it means that we are … and that's important because you know the language of medicine gives us precision and clarity but it has a price and I'm not going to read it, don't worry. This is a slide showing the overview of the elements needed to be present in order for a diagnosis of autism to be made. What I pull out of this are some of the language, some of the language that's part of it, so we've got ‘deficits’, we've got the word ‘abnormal’ used, ‘poorly integrated’ skills and elements of development, ‘failure of normal’ development, ‘difficulties’, ‘total lack of’ something, ‘absence of interest’. So, a lot of very difficult negative terminology that starts with autism spectrum disorder. Wenn I'm sure will have many things to say about that word ‘disorder’ being applied to him, very difficult term for many individuals on the spectrum, but for me it also is an issue that we're talking about a diagnosis and so we're already placing this within a medical model and I struggled for a long time to think of, you know, is there another word we can use instead of diagnosis, and at the moment I'm toying with ‘recognition’, so a recognition of somebody's autism rather than the diagnosis of their autism, because that language, I think, has an impact on the autistic individual, that they carry through them through their life, you know. They are always being measured up against, you know, this, as Wenn said, mythical predominant neurotype that presents a kind of template that what they are being measured up against. This quote is important because these three people Dorsey, Crow, Gaddy are three speech and language therapists who are themselves all autistic and they have this to say, “Teaching autistic people to present as neurotypical (rather than nurturing their intrinsic Qualities) has the potential to diminish their identities. This approach can encourage autistic masking - the suppression of autistic qualities to appear ‘normal’ … which can have devastating consequences … for quality of life”. Absolutely, oh dear, when I think of terms or initials like ASD in my head, especially when I've been writing papers, I've tended to think of autistic spectrum diff-ability or difference of ability, still not okay, but what I do know is that well hey that's better than disorder, but what I do know is that over time the way that people see us, think about us and treat us, as people that are disordered, actually leads to not just being impaired in our identity but to repeated trauma, which is obviously leading to PTSD, and yes not all wounds are visible, this is going on inside us, a child is growing up not really having any sense of self and that's exactly how I felt when I was growing up, I didn't know who I was. I don't think I got into masking and camouflaging, I didn't know about it, I was really detached from that kind, even that kind of reality. But the people I've met who did camouflage or mask who they were, so they kept themselves safe, they didn't get into trouble, they weren't punished, the incredible impact on their self-esteem, on their psyche, on their mental health was awful. And in fact, one lady said to me she doesn't know how to be anything else than the mask because that's all she's ever known. And I have written a paper and I've called it adaptive morphing, it's a bit of a mouthful perhaps, but people often refer to chameleons and say that they can be like a chameleon and there is this slight misrepresentation of this very ancient animal that they can just change their spots and blend in. Well, you know, chameleons usually … not all comedians do that, and those that do don't do so to blend in, they do so to stay safe, and the males push out their colours and become quite the opposite to their … to what they're in, the tree or their environment, when they're sending out a mating call, which I thought was quite interesting, but anyway, adaptive morphing to keep safe, we shouldn't need to be doing this and I know that it's not only autistic people that do this, but none of us should need to do it. And I'm reminded of a time when Ganila, a Swedish lady, and I had lots of young autistic people away in a camp in Sweden, where … and we had young people who didn't have language, they had their machines that they could type and speak for them, no parents were allowed and I remember just how when the parents left, and it was hard for them to go because they weren't used to leaving us on our own, but when they left the life that came into that group, young people doing all sorts of things, and I've got to be careful what I say here, but we did have to have condoms and watch the beer. It was amazing to see these young people who should be doing all sorts of ordinary things at the ages that they were being freed up to be themselves, stimming and all sorts of autistic behaviours were part of who they were and there was no banning of any part of their autism.

Thank you, Wenn. Thank you. I just … to let everybody know, as usual I've been over-enthusiastic in my preparation for this, so I'm going to skip through some slides because I want to move on to towards the end where Wenn comes back again. So I will just give you an overview of what I was going to cover, which was about, you know, having looked at the impact of that medicalisation of language for the autistic individual, what's the impact it has for those of us who are non-autistic, the holistic population, and I think for me there is an issue that this sets us about … sets us into a position where we're pathologising that difference. And when you look at something from a medical perspective our response will be within that kind of medical framework, so we're looking at cure, we're looking at interventions, we're looking at changing, we're looking at fixing something, and if I just refer you to this quote from Damian Milton, a wonderful academic, autistic individual, he says this, “One thing that does not work…, speaking as an autistic person, is trying to ‘cure’ someone of being autistic. Autism is a description of someone's Cognition, the way they behave, their way of being and acting in the world. Thus, I prefer to call myself an autistic person, yet do not see autism as a cluster of behavioural deficits to be fixed.” And to summarise all of the slides I'm not going to talk to, I just want to say that an issue has been that in our history with autism we have been so focussed on the those … that deficit model that a kind of natural response is to try and plug the gap, make the individual different in some way, and we focussed on that rather than spending time looking at actually what works for the autistic individual, how successful can their communication be, what are the strengths that we need to build on. So, I'm going to whizz us through, sorry, all of this and take us back to Wenn.

Thanks, Annie. Oh gee, the impact of and response to pathologising autism. That's just beyond talking about how severely disabling that thinking is, the push for cure rather than acceptance absolutely leads to trauma in autism, and you know there's intergenerational trauma, so it's not just because it happened back then and we've moved on, what happened back then stays and it's it's woven into the fabric of humanity and gets passed down the generations. So, the sooner this changes the better. I remember in my first conference, it wasn't quite my first, but a conference I went to and I had my first book with me in 1998 and I tried to share it with one of the professionals who was one of the speakers at the conference and they were a little bit shocked and they said to me but you're autistic and autistic people don't have insight into their lives, so who helped you write the book and I couldn't answer, which didn't help matters, but certainly not accept as authentic because I'm autistic, and the autism advocacy movement has developed since then, we have conferences run by autistic people, for and by autistic people, we have Autscape places of retreat where autistic people can get together in what we call autistic space. So, so much has happened, we've come such a long way, the neurodiversity movement is a movement on its own, of itself, but it's had to come out of being dismissed initially and not thought of as having a voice, nothing to contribute and we we definitely do have something to contribute. Things have changed dramatically and that's very important and we need to be moving with those times. I still get shivers really and discomfort even going over some of these slides and remembering because all of those images hook into a memory of mine as I've lived through those times, but things are changing rapidly changing. Jac is an autistic adult, she's part of a research team that I'm with and this is a little bit of what she has to say. “Deeper … I started to find information about autism that was written not by researchers or other professionals but by actual autistic people. I discovered a thing called the neurodiversity paradigm. The neurodiversity paradigm is an alternative way of thinking about autism, it describes autism as a part of the range of natural variation in human neurological development. At its very simplest, autism is a different way of thinking, just like biodiversity helps to create a healthy and sustainable physical environment, neurodiversity can help to create a healthy and sustainable cognitive environment. According to the neurodiversity paradigm, there are no right or wrong brains, all forms of neurological development are equally valid and equally valuable, and regardless of what type of brain you've got, all people are entitled to full and equal human rights and to be treated with dignity and respect.”

Yeah, I love Jac. That video is absolutely available and you can watch that, that's on YouTube. So now we have autism pride and we should be very proud, this is just also advertising the upcoming autism talent panel, we hope you will join us and we're going to end this session with a short clip by Donna Williams, who's no longer with us, but who was a brilliant artist, musician, painter and so on. [Music] Wow, that was incredible. I said I had high expectations at the beginning, that surpassed all my expectations, it was absolutely fascinating and I could have listened to you both for hours. I loved the way that you were weaving in the personal stories with a sense of historical perspective on how we've moved from pathologising to neurodiversity, but many people still are in that pathologising camp, aren't they? So, I wondered if we could start with that issue, just about language, and the kind of language we use. So there's a question here, for example, from Joe Billington, who says, ‘Professor Katherine Runswick-Cole has suggested that we should refer to autistic children and young people having special educational rights rather than needs, what are your thoughts on this change in terminology?’ It's sad that we have to have that terminology at all, to be honest, as humans we have human rights and I long, I long for the time when we move away from special, everybody's special, and special education I understand why we have to have that and we and why we're creating that understanding, so we've got specialist education going on, specialist teachers, but I still long for the time we don't need that kind of language at all. Annie’s just gone to sort the dog, Zoom life, heh, Zoom life! Annie did you want to say anything on that particular question or did you want to let us go on to the next question?

I think Wenn has handled that brilliantly, that's fine, thank you.

Brilliant, Beth I think you've put a really good question in here to the panellists, could you put it in the Q&A as well. Before I take Beth's question, which is in the chat, Kathy Wassel has made a really interesting point here and that is about the non-speaking part of Wenn's life journey, she felt was really poignant this week with all the furore of the Sia film, and then Kathy goes on to say Sia announced her directorial debut this week called ‘Music’ which is a musical centred around a non-speaking autistic girl and based on a friend's son. The autistic community immediately asked why an autistic actor wasn't playing the character, Sia cast her god-daughter Maddy Sieger. Sia’s response on Twitter were ill adviced and let's say did not endear her further to the autistic community. I don't know if you've followed this debate or whether you have any thoughts about just the principle behind casting a neurotypical in the role of an autistic. We're used to doing this I think, it's hard to to shift our focus. Here in Australia, we have Tim Chan and he speaks for himself through his machines, through his light writer, and that is the way to go, we're just not there yet. And I think it would be quite hard also to find somebody who's able to do that because although absolutely all the rights for anybody else, the same for us all, for the non-speaking autistic person we talk about alternative communicator there's a lot of energy needed and a lot of time and sometimes when you're making a documentary you're trying to push things into a more concise element, to get it out there, so that people will stay with you and watch it. And that often is not available, like Tim does amazing things, but he's still got to lie down, he's still got to get up and move about, his body does not stay with him, even though his mind is here his body is telling him other things. So it is hard work so I appreciate where that's coming from but I do absolutely agree that it still should be nothing about us without us.

Annie did you want to add anything to that?

Yes, I think there's a a terrible misconception that because somebody doesn't communicate through words that they're somehow not communicating, and it's a terrible disservice that we're doing and smacks of our ignorance really and our difficulty for us as holistic individuals to be flexible and see beyond what's the usual currency for dialogue. And I think one of the things that I thought was quite offensive in Sia’s defending of choosing somebody who was not on the spectrum to play this part was because she thought it would be too upsetting for the individual on the spectrum to be involved in that and you know there are many, many individuals on the spectrum who communicate alternatively, I'm thinking of the late Amanda Bags and her capacity to have such a rich life and communicate, for those of us who couldn't access her communication, you know she would type for us, you know, just as Wenn was talking about Tim and there's a certain arrogance in assuming that somebody on the spectrum wouldn't be able to cope with the demands of filming. Not the case, not the case.

Thank you. There's a follow-on question actually that follows quite neatly on from both your comments here from Constance, who asks she was wondering what language you would use to describe the capabilities and potential of someone who's severely autistic and non-verbal. We would probably say, I don't know, I find it difficult because to talk about autism as severe, severely disabled is often more from the way the world relates to us than from our disability. Having said that I know you can have autism and cousins so you can have autism with intellectual disability, and that's probably the wrong way to say it these days, cognitive challenges, you can have autism and all sorts of learning difficulties, and I'm dyspraxic and dyslexic and matholexic and that's the wrong word, there's all these things which crowd in to take away and rob you from the from what people think of as ability, but maybe that's because we think of ability in the wrong way. So there's all sorts of ways to to share in someone's life and they might need lots of space, they might need lots of time on a low alone, or they might need lots of time with music, or with colour or with pictures, or they might need, need, need … they'll have lots of things like I need my glasses and I need my cap to help protect me from the light and all sorts of things but this should be common, this should be, this should be normal, it should be usual. So thinking of language, the minute we add words like severe we're already robbing somebody of their humanity. Having said that, I know we've got to find language that also supports them for what they need but I'm visually challenged, my sight is quite poor and I don't mind referring to myself as somebody with poor vision but I don't know if that's the right term, it's fine for me, it helps people understand me. So I'm unsure, unsure.

Thank you Wenn and Annie? Well, I think it's a precious question because it really shines a light on the fact that this is a dialogue that we're all engaged with, there aren't necessarily answers right now, so that we can say this is the terminology you should use, but it's something perhaps that we should explore and come to together in collaboration with individuals on the spectrum. You know, they are doing a great job for us in helping us move away from that kind of neuro-normative perspective that we have, that sees everything's in … you know, it's an ableist position, where we're looking for something that will make the person acceptable almost, you know, because you know they're autistic but they're good at this, you know, rather than actually celebrating the autism and moving to a place where we're not diminishing the person on the spectrum but instead respecting the areas of strength that they have because we all have, you know, as when saying we have things that we're not so good at and things that we're better at and that's about being a person being human. And Terry here says I have a strong belief that we would not have the world we have today if it was not for autism, this includes technology, science, visual arts, music, dance, communication, etc, etc, what do the panel think of this? Now, it's absolutely true, but at the same time a person has value if they're not part of all of those things, you have value because you're human and it's lovely that we … and they're quite right, without Steve Jobs and other people who would not have our tablets and iPhones and all these things, but at the same time I don't want us to think you're only valuable if you seemingly are able to do something amazing. You're valuable because you're human. Yeah, and there's somebody here also, who's anonymous, who's saying what about non-speaking as opposed to non-verbal, in my experience this is generally preferred by non-speakers.

Would you agree with that?

From my understanding with my Friends, yes. And we also talk about alternative communicators, yeah.

Brilliant, I've just got one final question which I think might be a good one to finish on but before I ask that there's Beth from Bristol University, she's introducing a new undergraduate unit next year called Disability and Society and she's aiming to challenge the students to really think and critique the worlds they inhabit. She asked if it would be possible to use the webinar with them please and she's left her email address. You don't necessarily have to answer that here and now, but I just wanted to flag that so we don't miss it but I should think it would be good to spread the webinar as much as we possibly can but we could talk about that later, so, Beth, I think I think there is a nod there from our panellists, yeah that's brilliant. So, the question I thought would be good to finish with was what do you need … what needs to be done to change or challenge the society's perception regarding individuals with autism and how can we drive positive change?

We're doing it, that's what this webinar is also about and you can't make people listen, you know you can take the horse to water, you can't make him or her drink or them but we're doing all we can you've got to keep it up drip drip away at it and people, the more autistic people people meet, of all ilks and from all domains, etc, the better, I think but Annie probably will say something really good on that.

Well, I think I think you've said it, Wenn. And what I would like to say is that I think there is something, is the word the zeitgeist, now is that there is this real pushing forwards with the idea of neurodiversity and celebrating difference and different ways that different minds work and it gives me a wonderful opportunity to just plug this, that I said I was going to show, I don’t know if you can see that, it says ‘me and your normal are done’ and it's just flagging up that a friend of ours and somebody who contributes to the program at Birmingham, Dean Beadle, and orchestra have come together virtually to create this piece of music which was written by Dean which absolutely encaptures everything we've been talking about this evening. So perfectly timed but a reflection of this is the way the world is going now. Brilliant and also perfectly timed because we have got two more events that the department of Disability Inclusion and Special Needs are holding, I'll highlight just two of those events because we've also got events that are being organised by our team in Dubai but I'll just highlight the two that I've got here in front of me now and would urge everybody to go and have a look at the Disability History Month website. Lila, I don't know if you would be able to cut and paste the link to that in the chat while when I finish off here, the two events I really wanted to highlight to you was one of them following on from what Annie just said on the 30th of November between 12:30 and 2 we've got a lovely event called celebrating autistic talent, and we've got a number of autistic panellists joining us for that, including our very own Dean Beadle who, yes, who is still here and hopefully we'll hear more about the latest project that Annie just mentioned, and we've also got students from Al Karama school in Abu Dhabi joining us, that's an autism school for children and young people on, autistic children and young people. So, it'll be a really interesting event and we're also going to show a short film produced, based on a story produced by a young autistic boy, called Urban Towns, where he wrote a story about escape from lockdown So that's the event on the 30th of November between 12:30 and 2. And then on the 26th we've got an event which has a panel of parents of children with special educational needs and we're going to talk about disability and special educational needs in the current Covid crisis and we're going to pose the question how can we create what education needs to look like So, I'd really urge you to come and join us for those events.

Thank you, everybody for coming along here and participating and special, special thanks to Annie and Wenn for a fascinating hour, and to all our chat facilitators and our organisers in the background, Sammy and Peter in particular. Thank you very much everybody, have a nice rest of the evening, bye, in the morning Wenn, the morning. Yeah. Take care, bye.