Celebrating Autistic Talent

And we're going to start with the wonderful Robyn Stewart… Steward, I always say Stewart, Steward. Robyn, would you like to introduce yourselves to us, and you're going to talk for five minutes, introducing yourself to us but also talking about why this is really important to have events like this.

Yeah, I will start my stopwatch so that I keep to time because when I go to conferences it irritates me when people take too much time so. So, my name is Robyn Steward and I'm autistic, and I'm 34, I live in the UK and I'm an artist and a musician. I failed through school, I didn't have any GCSEs or, you know, anything, any kind of formal qualifications, I got kicked out of school when I was 15. And I went to college and I found that a lot easier. and now I have somehow ended up with an international career teaching people about autism and writing books.

I've written two books, if I just reach up and get them off the shelf. I should have thought of that before, so the first book is ‘The Independent Woman's Handbook for Super Safe Living on the Autistic Spectrum’, it's 355 pages long and I'm not someone that finds reading and writing particularly easy but because I had help with the editing it was possible. And then the second book came out in April 2019 ‘The Autism Friendly Guide to Periods’ and that sold over 5000 copies around the globe.

Yeah, so I do a lot of different things and I make art and music and it's not always autism specific. And I think having, sort of, reframing autism and looking at the skills someone has I think is really important. I think that for quite a long time people were very kind of… people had seen ‘Rain Man’ and they sort of put autism and savants together and I'm definitely not a savant. I wouldn't say that I actually have that many talents, I would say that I've worked hard to gain skills, but I think it's really important that we recognise that if someone isn't fitting into the education system, that if they are, you know, not, you know, like an exam person like, you know, I got kicked out of school, I had no GCSEs and I thought I was stupid and it wasn't until I was 26 when I wrote my first book, I wrote half of it in 10 days in June 2012, and I realized oh I'm not thick, I have all this information in my head but I just… it… I collect all the information in and I download it and it needs organising but it's not, you know, that that doesn't make me less than other people and, you know, that that book uh was translated into Russian and I think in Russia it was like the first book for autistic women published in Russia.

And yeah, it, you know, when I look back and I just think well, yeah, I mean it's not like I just had all this stuff, you know, I had to work at it. As a kid I said I wanted to be an artist and a musician and a writer and, yeah, a web designer and I guess I've done all of those things but they weren't… it wasn't like I just was naturally good at things, particularly. I might have had an aptitude for it, like a leaning towards it, but I actually had to work really hard and I actually, I did a National Diploma which is equivalent to A Levels in art and design, and on that course actually I wasn't that great at it, you know, I really struggled but now, you know, using visual art is a very big part of what I do. So, for example I drew the pictures on them on the front cover here, but I also get paid to make little films and animations and things and and often using visuals that I've created or I'll work with an animator, a visual artist and I'll do the animation in like Adobe After Effects or something like that. So, it's all been working really hard and I just thought I was rubbish at art because, you know, my people the way I draw people is not particularly… yeah, I mean they're not… other people, when I was in college, they were doing like sort of almost photorealism and I just, it wasn't my style. I'm more like Gerald Scarfe. So I draw that kind of thing, but if you look at it it's bad art because you know the limbs are not quite right and the person's standing awkwardly and they look a bit flat, but you know I make money, I have a distinct style. So, that's why I think it's important. Thank you.

Thank you so much, Robyn. Can I just ask a question around, was there anyone in particular that encouraged you to develop and work hard at your aptitudes? Did that make a difference or did you decide that you really wanted to work hard at them?

Well, my parents were very supportive mostly, although I think like a lot of parents, I think one of the lads from Abu Dhabi said about their mum saying well, there's a lot of YouTubers out there, yeah, I think if you ask my parents should I focus on music they would say well there's a lot of musicians out there, but actually really what makes you successful is working hard at it and being consistent. And I think in the business world they call it pivoting, like being willing to see that something you're doing is not working and then changing, and also there's a sort of fine line of what you want to create as an artist and what you need to be able to do to earn money. So, sometimes I take on a project and I'm not really that, you know, like maybe it wouldn't really be what I would want to do if someone gave me a complete free choice, but I have to work, excuse me [sneeze] sorry, I have to work within the client’s parameters, I have to do what they want me to do, what they're paying me to do. But, you know, in that situation it makes me feel privileged that I get to do like a creative job but I think I'm an associative… associate artist of an organisation called Heart and Soul, you can visit their website www.heartn (that's an n) soul.co.uk, I'll put it in the chat and they've really, really encouraged me and also a trumpet player called Andy Diagram who inspired me to put my trumpet through guitar pedals because that's what he does and then, you know like, I've done like yeah, I mean I've like now I have this night that I've run at a place called Cafe Otto in east London called Robyn’s Rocket there's a website Robyns (don't forget that Robyn has a y in it) robynsrocket.com and, you know, that's like Cafe Otto's like Ronnie Scott's but for the experimental jazz world, like it's kind of a big deal. And I've done things like speak at South by Southwest in Austin, Texas in 2018 and it's really, it's because I had the encouragement from Heart and Soul and from Andy and the people that really Andy, sort of, introduced me to. So, you know like I have a duo with this lady called Kathy, and I just started to meet all of these people, as well as, you know, promoters who like really champion the work of like underground artists or experimental artists. I'm lucky that in London, in south east London, there's the Southeast Experimental Music Network, they have a newsletter and like events listings, so I'm very lucky. I think that you know maybe if I was in another genre, maybe it would be different but I yeah. So, some of it is environment and some of it is individual people and some of it is just being like I really want to do this, this is really important to me.

Oh brilliant, that's so helpful, there's lots of really nice comments in the chat, Robyn, you might want to have a look at that when Wenn’s talking next, but we're also cutting and pasting the titles of your book, because people, of your books because people have been asking about those too. We will come back to you, we're going to have questions right at the end when everybody's spoken as well.

Now just to say if people want to buy my books they can go to my website robynsteward.com and I have an online shop, so if you wanted a signed copy I can, I can send you a signed copy.

That's great, thank you, thank you. We'll be hearing more from you, but meanwhile we're going to hear from Wenn, let's see where Wenn is, I can't see everybody, I'm like… there we are, yeah, Wenn, over to you. OK, thank you and Robyn came over to Australia and we talked together and Robyn used her artwork in lots of the presentations that we gave together, so it was amazing. Like Robyn in many ways, I also got kicked out of school at 15 and was told that I wouldn't amount to much, certainly can't type with keyboards using all your fingers and things, but I went back to school at 32, I think… 38, 38, and did the last two years of high school years in Australia, year 11 and 12. And I got a higher and I scored into university and my family like that, really freaked them out, I mean, you know, what right do I have to go to university, nobody in our family's ever done that. So, I thought it was pretty cool and I got into uni and I love writing, I love to paint, I love writing poetry in particular and um I type with one finger, this finger is heavily insured, that's a joke, that’s a joke they don’t really insure fingers. OK, what else, I live in Australia but I was born in the UK and I actually work with the University of Birmingham as a tutor but also did quite a bit of research here in Australia with some universities here and write books and present and travel, which I love, which you can't do at the moment, because of Covid 19, but that's all right, I’ve been writing poetry about the experiences of Covid and lock down and especially one about the masks, I don't like them. Anyway, how long is that, nearly five minutes, I don't know how long five minutes is. I'm not as bright as Robyn, I didn't time myself.

You've got a couple more minutes, I have got a visual timer but I didn't want to put people under pressure but you've got a couple of minutes okay you wanted to say anything else.

Yeah, well, if anyone was interested in a book that I've written called ‘AS Poetry’ that might be something that people would be interested in, it's published in London by Jessica Kingsley and certainly that that's available from Jessica Kingsley's webpage. I have a web, I have a home page and that's www.wennlawson.com, lots of information, talks, videos. I also do animations, a bit like Robyn, and I have a YouTube channel, YouTube's quite popular amongst autistic people, and I don't usually look orange, yeah that'll do! Have you got a piece of advice for Abdullah or Saeed by any chance or? Oh, look it's really important to run with your interests and to pursue what you're passionate about. As autistic people, we function best and thrive most when we're doing what we're interested in and yeah, a lot of people didn't think I'd amount to anything as in didn't have any expectations that I'd even be able to read and write. So, so, you're doing amazing stuff guys, you just got to keep at it and work hard, as Robyn said, because this is the way of the future, the future is digital and you guys are in it.

Thank you, Wenn, that's really, really helpful and you're very, very modest about your own achievements, but you have made a substantial impact on the field and it's quite amazing having heard from both you and Robyn, now you both make a real impact in terms of your thinking, your writing and your different engagement in in various aspects and lovely, lovely to hear from Robyn too about the engagement in music that Robyn is involved in. We'll come back to you, obviously, when we're having the discussion but before we do that we'll hear from the other three first.

So, Sara is going to talk for five minutes as well now, Sara King.

Thanks, Karen. So, I’m Sara King, I'm autistic, I'm a mum to two autistic children and I've got other autistic people in my family as well. I'm a part-time PhD researcher here at University of Birmingham, and my subject is looking at maternity services in relation to autism. I'm involved in other things as well about autism, I work with Autism West Midlands, they're a local charity and I lead a discussion group and do some training and speaking as well. I'm also part of the Swap Network which is a network for professionals who want to learn more about autistic women and girls. I’ve also got a day job, I work, I'm a procurement practitioner and that's sort of my profession. And just want to sort of start me off about this topic really, to help me frame this I'd like to share my own personal experiences of discovering I was autistic and what that meant. So I was only diagnosed about six years ago in my mid-40s, following my own realisation and self-diagnosis, and then had a formal diagnosis and this was before other family members were diagnosed. So I'm really at the very early stages of learning about autism and reframing my life just through the lens of autism, it seems to be a lengthy and ongoing process just going through these realisations about why things happened, why I did what I did in lots of situations, trying to learn about other people's experiences as well. This exploration started before my diagnosis and it led to me starting my studies, I'd read extensively and led me to to wanting to study further. I'm really keen to hear what other panel members are saying and have to say today. The diagnosis was a huge relief for me, I had it privately and it was strengths-based and it made me recognise my competencies but didn't discount the difficulties and challenges that I experienced. I spent much of my life thinking that I was incompetent and stupid, irritable, difficult and someone that just didn't manage life's problems as well as everyone else seem to. I also, there's a theme here, I left school at 16 and didn't do as well as was expected from me and I learned to mask to fit in and that took so much energy and effort that I could really have spent on other things and led to anxiety and depression. I'm still trying to work out really what's me and what's the mask, and I understand this is a really common experience for people that have been diagnosed late. It took me some time to process and accept fully that I was autistic and a lot of that was because my initial understanding of autism was through the general media portrayal of it, which largely stereotypical with sensational stories and focussing on the challenges, and that stigma and lack of general understanding made me quite scared initially to disclose and this has changed a lot since my learning and much of what I read and saw didn't match the experiences that I was hearing from autistic people themselves and I felt a real affinity with their stories. I'm really grateful for those that chose to share openly, it made such a difference to my understanding. So knowing that I'm autistic has been liberating in many ways, there have been times in my life where I haven't coped and understanding my challenges have helped me make changes to my lifestyle and identify tools that make things easier with support from those around me, allowing me to identify them and focus on the things that I'm good at, and this applies to my personal life as well as to work. And things, you know, it's able to cope much better because of these changes. I'm not sure that we need to only focus on strengths, some autistic people I know feel the negatives outweigh the positives and I would hate to feel that those challenges are discounted and I also think a strength can be anything, there's so many things that could be considered strengths, the ability to have a happy life and find fulfilling things to do with your life, I mean, we'll talk about that I'm sure later. I want to also just highlight a real disadvantage about talking about deficits and this is about in the diagnostic process for my children. This took years and was all based on challenges and difficulties they experienced and identified by professionals in their lives and this culminated in an appointment which asked us because their parents to discuss a whole range of difficulties and negatives, with only a few positives, in front of them. This was hugely inappropriate and I was relieved that I'd written down bullet-pointed information and I just referred the practitioner to that so that I didn't have to say this out loud in front of them and I watered down all the negative information that I did have to say and commented on the positive. I was so shocked that this seemed to be the norm to have the children in the appointment and listening to their own parents talking about them in a negative way. We didn't miss the irony afterwards of the children being offered support with self-esteem improvement, it just didn't make a lot of sense. I was aware that the system required this to get a diagnosis but in our discussions with the children prior to taking them to the appointment we'd discuss autism as a difference with them and focussed on all their strengths. I do believe that children should be involved in this process but I would have been a lot more comfortable if it had been a more balanced discussion and I did feed that back to the to the diagnosticians and the services that put this through. Children have, my children have many individual strengths and talents and my husband and I try and reflect that back to them so they can see that, but again, same as in my experience, I see a lot of their energy and effort being used on trying to navigate school and other life situations that are confusing and nonsensical to them, together with managing things like their sensory challenges. So, I think what we need is a thoughtful and balanced approach to this process. I think we've got some way to go but I'm really pleased to be here and be part of this and hear all about these wonderful strengths that people are sharing, so thanks very much.

And thank you very much, Sara, delighted to have you here and that was, that was… you raised some really important issues there, both about you having a strength-based diagnosis yourself and experiencing what it was like to be given a deficit-focussed diagnosis, but also being very honest about being able to be honest about challenges as well and I'm sure we're going to pick up some quite a bit of this in the discussion itself. But before we do, I'll pass on to Dean and then it'll be Barbara after that and then we can open it up for more discussion. Dean, are you ready, I can't see you here right now. I am, hello, can you hear me?

Fantastic, it was really encouraging to hear those three three perspectives because I can relate to all three of them in different ways. So, I am Dean Beadle, I'm an autistic conference speaker, inset trainer, writer singer, but it was interesting that I could relate massively to Robyn and Wenn's story of just being underestimated, or all the way through childhood being misunderstood, undervalued. At the age of seven, I was told that I'd end up in prison by the time I was 30. I'm now 31, I’m locked down but I'm not locked up, so I'm doing all right. All the way through, people focussed on what they perceived I couldn't do and I think it is so important that we reframe autism. And what I liked about what Sara was saying, one of the many things I liked, was that finally people are starting to get strength-based diagnosis now, you know, at last, because for so long you were given a list of things that people have decided you can't do in the same way as the majority and have massively overlooked the ways in which you can do things, the strengths and abilities that you have. And the biggest sort of pushback that seems to be against this discussion around reframing autism is that, and Sara touched on this, that if we focus on ability and strength are we overlooking challenge. And my view is no we're not but I think it's important we look at both areas. And I think the way we frame the challenge is important, so from my perspective, and this has been touched on already, for me being autistic is a difference, the way in which it becomes a disability is that I'm interacting with a world that isn't designed for the needs that I have. So, for me the, and this is only my personal view, but for me, I go with the social model of disability. So, the medical model, historically, is sort of very deficit based and very negative and a list of criticisms essentially because you're being compared continually to non-autistic people. The social model says you have lots to offer lots of skills, abilities, different unique ways of perceiving the world, the problem is that the world isn't designed to be accessible for you. I go with that and I know the UN models it in the middle, there is an inherent difference but the problem is the environment causes the challenge and that's… I go with that. And if we could shift to a world that can actually appreciate what autistic people have to offer, and I think events like this are really important. About three or four years ago, I was asked to host an autistic talent event, back in the days when we could do live events, and my initial thought was well shouldn't we just be accepted into generic talent events, why does it have to be an autistic one? And then I thought about it because I was hosting, and I was singing and it was it was a brilliant day, and then I thought about it, we don't have that that that in yet, it is it's very difficult for autistic artists, performers, writers to get seen and so we need events like today to give that platform to autistic folk who are creative, and it's been so exciting to see, you know, so many examples of autistic talent. And it's interesting that when you look at the, outdated now, but the supposed triad of impairments it always said lack of imagination, well, I think that's clearly on display today in many different ways. I think we have a unique way of seeing the world, I think we have a unique perspective and when that's channelled into art, into writing, into all sorts of creative outlets the imagination can be off the scale. John Adams is a wonderful autistic artist and he runs an organisation that is trying to increase inclusivity for autistic creatives, it's called Flow Observatorium, which is not easy for me to say, and he's wonderful and his art just encapsulates this. So, he was asked by the government in 2012 to make a piece of art about the Olympics and his engagement with it as a neurodivergent person, and so, he collected every item for about three years I think in the run-up to the Olympics, every item that he'd seen that made him think of the Olympics. So, it could be a flyer, it could be something that has a colour from the Olympic logo, anything that made him think of it, he kept a book, a sort of map of everywhere he'd been, and what he'd found and at the end of it the piece of work was a geological map of every item he'd found that made him think of the Olympics. Only an autistic brain could think of that. I read ‘Neurotribes’ earlier this year and the message that came through that, by Steve Silverman, was that again and again through history it's autistic ingenuity, autistic creativity that tends to get us out of trouble. And I can't help thinking that whoever comes up with this vaccine will be one of us, I'm convinced of it, they may not know they're one of us lot, but I'm claiming them, nonetheless. You know, I think our… the way we look at the world is different and the world needs that, it needs that insight. I wanted to draw attention if I might, if I may, to a bit of work that's come out recently that I think is really important, so, and it's about that reframing autism thing I think is so important. For so long, autistic people have been referred to as socially deficit, as opposed to just being socially different to the majority, and last month the book came out, I'm going to hold it up to screen, called ‘Is That Clear’ by Joe Butler and it's a guide for non-autistic people in how to interact with autistic people effectively. I cheered when this came out, I mean, I wrote the bit for the blurb for it because I was so excited about it. At last people weren't saying aren't autistic people really rubbish at socialising, at last, they were saying autistic people socialise differently and it is about time the rest of the population change the way they communicate to fit in with us. It's life-changing and the Department of Autism Research and Technology have done some wonderful work looking at autistic social skill and pointing out that we don't lack it, we just have different ones. And I think linking that into talent and creativity, that unique view of the world, that unique perspective, I think leads to incredible art. I've been reading Gary Newman's book recently, who is an autistic artist, who in the 80s was referred to as weird and strange and unusual and odd, and now 30 years on people are saying he was a pioneer in the way that we created music moving across to digital, electronic. And so that would be my advice to the younger folk that I've shared today, particularly the young person who was talking about being a YouTuber, just because there are plenty of people doing it doesn't mean any of them can do it in the way that you do, and that has value, so hold on to your creative force, what people, how people react to it, how many likes and shares it gets, all of that stuff sort of gets in the way, if what you're doing is true and real, it will find its audience, you have to believe in it, and believe that it's brilliant because it's coming from an autistic creative and not despite it. And I'm going to finish on two things if I may, because I don't want to run over time too hideously, but two things I want to finish on, first the reason we need to move away from deficit model and across to strengths model, whilst taking into account the needs, as we've said, and moving away from that sort of heavy behaviourism that I think marred my childhood, but moving across the strengths-based model is essential because the medical model that currently is in place, I think, I believe, gives rise to so many horrific treatments, therapies, stuff designed to modify the individual moving across to a strengths-based model, whilst not ignoring need, but not writing somebody off because of those needs or blaming them because of it, in my view, reduces the risk of autistic people being forced to blend in. I want a world where the next generation of autistic folk can be autistic openly, proudly, without any pressure to mask in a world that not only understands them but celebrates it and I'm going to close on a plug, so forgive me, but last week, I'm a singer and a songwriter, and last week I was collaborating with a band called Orchestra, who are predominantly autistic musicians, autistic singers, songwriters and we released a song last week on YouTube and all the other platforms, I'll put the link in the chat, of course, plug, plug, plug, and it's all about the way that autistic people are treated in society, how we're undervalued, how people try and modify us, as opposed to celebrating who we are and it's a stand for being autistic in a hostile world, and it's called ‘Me and your normal are done’ and we accidentally launched it right in the middle of Disability History Month and we're so delighted with our timing. It's not monetised, we don't make any money from it we're just putting it out there to make that statement, if you like your protest songs with an 80s funky beat and a 60s psychedelic video then it's the one for you, and the point we're making is enough already, stop saying that we're flawed versions of neurotypical and start realising that we’re fabulous autistics, thank you.

Brilliant, Dean, thank you so much, and it is absolutely excellent, really, really impressed with that work and that music. And you've had a real thumbs up here from Saeed, who says “I like this dude”.

Well, now I've lost it. I’ve not been a dude for many years, but I’ll take it! Thank you, Saeed, I like you as well. Yeah you're cool and you remind him of him and he says you talk a lot and you like to make an argument, and you're the spitting image of him, so clearly there's a real connection there which is fantastic.

Thank you so much Dean, we'll come back to you in the discussions. We've got Barbara now, and Barbara did we… did you want to upload your slides yourself or did you want me to do it?

I'm not sure I got permission to do it, so you might as well do it because as you’ve got permissions on there.

Here we go, I'm going to now share my screen and you'll have to tell me all of you whether you can see it properly, is that visible to you as it should be?

Yeah. Brilliant. So, I am quite a visual person and so I needed slides to talk through, I couldn't just sit here and talk. Soo, I've put on there who I am. I'm an autistic individual, an autistic parent, I'm a PhD student studying autism and I used to be a special needs coordinator at a mainstream secondary school. And so I wear lots of different hats, I'll let you choose which hat goes with which job, I think I've got a rough idea but I'm not going to share. I feel quite different in this chat in some… in the sense of when I was asked to participate my gut response was well I don't have any talents, I don't have any strengths, and I think probably that's significant in itself because I think that's a result of my experience, life experiences. I wasn't diagnosed until very late in life, that makes me feel really old, I'm not that old, I haven't been diagnosed very long. And my education was very much… I was average Jo at everything, I worked hard to achieve something right the way through school life, I never excelled at anything, I never had… [sound distorted] so, I have been depressed for the last 20 odd years as a result of that, so when we talk about talents there's not a lot I can say about myself because I haven't got to the point yet of say realising I've got any talent so I'm going to share with you a little bit about what I've learned through my PhD study which may help on this topic. So, Karen if you want to move on to the next slide for me. So, this sort of vicious cycle I think is really relevant when it comes to recognising strengths and it very much starts the top right, in my mind, and my research is suggesting that can be as early as four years old, that people are recognising that they are different to what they perceive as the norm. Then probably from secondary school age they begin to mask because they're trying desperately to pretend to be normal, because they think how they behave is wrong and because they're desperately trying to get to this norm. Therefore you get mental health implications, reduced sense of self, I think Sara said and I would echo, I've got no idea who I am and I think that links in with the strengths. And importantly, other people only see the mask then, so they're not really seeing autism as it is truly felt and experienced. So, people don't understand the autism, which means the norm, and it goes round and round and round, and so if you can click once for me, Karen. The only place… that's where it needs to stop, if we can get to the point where people are recognising they're different and that's not a negative, the rest of that will go away, and I think that's the really important part that we need to address. If you can click onto the next one for me, Karen. So, when in my research I had four different categories of people, those were self-diagnosed had no formal diagnosis, those who were self-diagnosed and then went on to get a formal diagnosis, those that were formally diagnosed because somebody else told them they were autistic, and those that were formally diagnosed when they were younger so completely out of the process per se, and they were given a lot of different features and asked to pick what they thought their… what they thought autism was to them, and then they had to pick the top one. And you can see on this, and this was really telling, that people are picking negatives, of all the things and they had positives and negatives to choose from, the most things that people were choosing that linked to their autistic identity was negative things, and that's really sad I think. The only category that came up with the positive were those that were formally diagnosed when they were younger, and again maybe that's got that's got a message in there as well, that actually the younger we can start addressing those positives and we can start looking at those strengths. But for everybody else it was all about negatives and I think that's something that really yells that something's got to change. Karen, if you want to click on for me. I've put this up because I use this… I had a conversation with an autistic lad that I was mentoring and he was reflecting back on his past, he was at school when I was a SENCO there, and he was reflecting back on how he been treated by other people. And he was starting to get really depressed and says I hate that person, I really hate um who I am, I'm broke and I'm not this, and I use this metaphor with him because computer games and everything works great, I said to him, I said look you're a PlayStation and you're trying to put an Xbox game in, is that Xbox game broken? And he went well no, I said so why isn't it working? And he says because it's it's a different processor, I said exactly. I said so put the right game in will you work fine and he went yeah and you can sort of see what I'm getting at there it's no… neither are broken, neither are faulty, they just don't match up, we find what matches up and it will work right. So, it was really important to him to understand that it wasn't the PlayStation's fault, somebody else had put that game in so he wasn't to blame for everything that happened, basically. If you want to carry on for me, I can't remember how many slides I've got now. Right, so how do we reframe? So, a lot of this has been talked about already, disability to difference, diagnosis to recognition, awareness to understanding. I think the key thing for me and probably hesitation when we're talking about focusing on strengths, I think for those of us that don't recognise our own strengths, if we purely focus on strengths you're going to alienate people as well and I think it's really important to actually go we're human, all humans have some strengths and all humans have some weaknesses, let's not focus on one or the other, let's just focus on we're human. Last slide, I think, so these are my hesitations, and I very much feel, like Sara said, let's not ignore the different difficulties that people are having. So, some questions on there, why aren't alternative communication programs trialled as standardly as hearing aids are given out. I'm not going to answer that one, I don't know if I can. More understanding needs to be developed around autistic cousins and what support needs to relate to this and I think that's really important because quite often actually children go oh you're autistic, so that, well actually no, I'm autistic and I've got learning disabilities, they're very different and they need very different things. And learning styles and requirements need to be addressed in our education system, huge, huge questions to be answered there. I think that's my last slide, Karen, and I have no idea how long that took, so I apologize if I went over.

No, that was fantastic and an absolutely brilliant way of wrapping everything up and I saw earlier in the comments, that Ros was saying that she was really sick of having professionals who were focussing on faults. Did you want to add something there, Ros, because I thought that was a really powerful point, which picks up on what Barbara's been saying as well.

Yeah, I mean, I particularly picked up on what Dean said that he'd been written off at seven, my son was written off at two, and it just seems that you go in for an assessment so that they can find out what the faults are, so they can tell you what you can't do. It shouldn't be like that, it should be identifying a profile, a way of working so that you can bring out the best in that person, minimise the weaknesses, increase the strength, so that you can get the best out that the person can be. But that doesn't seem to be the model that is currently worked on.

No, thank you, and I thought Barbara very eloquently wrapped a lot of that up and made it really clear what it is that needs to be changed there.

And following on from what you both have just said there, there is a question in chat which is about how can mainstream schools, and this is for the whole panel really and do feel free to answer any you want to answer as well Ros, how can main street schools based on the social model be more accommodating to all on the spectrum? Any particular environmental accommodations or modifications that you would suggest?

Yeah, I think it's really important that that kids of all disabilities, that they have time with children without disabilities and vice versa, that, yeah, I can see that sometimes you you know a child may well need to go to a special school, for example if they're peg fed or they have very complex health needs and they need that, you know, the specialist facilities that special school has, but nonetheless I still think it's really important, I think that some of the problems that autistic people face are because the wider world doesn't really know autistic people as their friends, as people they hang out with, we're often… people only hear about us like when we've done something really wrong, when we’re like Rain Man, or if we've done something really good, not just if we're ordinary, but there's plenty of ordinary autistic people that are just carrying on their daily lives and they're making a contribution to their community, and then, you know, they're not, you know like, they're not breaking world records or anything like that, but they're just ordinary. But often it's those people that, you know, that sometimes are quite sort of shunned and ignored by people because they might struggle with socialising or whatever and it's… so it's really important that everyone in in a school, all the staff, all the students, that they learn how to talk about disability, how to ask questions, like people have questions and I think that's fair enough, you know, and I think people should be able to ask questions and that that shouldn't be something that people see as a, as a negative, but it's about having the language to be able to articulate your question without being offensive and kind of understanding, you know like, because not every autistic person wants to ask, you know, wants to be asked questions about autism. So, it's having an opportunity to ask those questions to someone who's happy to answer any questions, but also I think just knowing, you know, for all the young people to know that you are a community, like, you don't choose your community when you're a kid, you know, you're trapped in this school, so you've, you know, we've got to try and help everybody to get along and everyone support each other, and actually, autistic people, you know, can you know be positive, you don't just have to see us as being, you know, a problem, we have good things to offer, just as you do, and so I think it's really, yeah, I think that’s… for me is key is that that you can have the nicest school in the world or the nicest autism school in the world, lovely, but, you know, these kids have got to be able to go outside and work in, you know, the real world with the rest of the population, and the rest of the population has to work with us, so everybody needs to understand about autism and have certain vocabulary. The same with other disabilities, like, I just think that, you know, sometimes I have a squint because you can't really… I mean, maybe you can't see it on the camera, but I have a squint and sometimes it's quite pronounced and sometimes people will say things like were you born like that, and I just think well what are you trying to say with that, I mean, you know, like do you… just maybe you've not seen someone with a squint, do you just want to stare at my squint, that's fine, if you just want to look at it I don't have a problem with that, why don't you take a picture on your phone and then you can look at my squint, you know, because I think maybe they haven't seen somebody with a squint before. And that sometimes people say things that are a bit unkind, but I didn't think that that person meant to be unkind, they weren't… I wouldn’t say there was any malice, I thought that well they’re probably just not really, no one's ever taught them about squints, no one's ever had a conversation with them, hey some people have a squint where their one of their eyes goes off to one side and and, you know, the reason for that and why that happens and how it can affect someone's life. And so, I think, you know, we should make sure that whatever we do with education, no matter how nice it is or how not nice it is, we educate everyone about disability and give people the language, because language can be power absolutely.

Yeah, really good and Dean you've picked up on very similar themes to Robyn there in the question and answer.

I'd say I think it's important that mainstream schools are receiving, I mean I'm biased obviously, but I think it's important the mainstream schools are receiving training from autistic voices, authentic autistic input, I think is vital, consultancy, I know Robyn does a lot of consultancy as well, I think it is really important because there's a lot of training out there that just is out of date or it isn't isn't accurate. I also think, touching what Robyn was saying, I think it's important that we remember that we need to maintain a variety of settings for a variety of needs. Robyn’s right, something like 72 percent, I think it is, of autistic students are in mainstream, there are a huge number of kids whose needs could be met in mainstream, if mainstream got its act together. Having said that, there are some mainstreams I've got to work with who are doing brilliant, brilliant stuff, so there's hope there. But it's also important to point out that the assumption is always that special schools will meet need, there's also some pretty shoddy special schools out there too, so it isn't a given. I've been to some supposedly autism specific environments that have been horror stories, having said that, touching on what Robyn said about autistic people being visible, I agree hugely. A friend of mine is the assistant head of a special school in Hertfordshire and it's their job not to become an island, she said to me, you know, one of my biggest aims is that our children are part of society. So, they do activities in society, they do class swaps, pre-Covid, they did class swaps with the local mainstream primary. So, these children are not only visible but valued and understood members of society, which I think is really important, because the danger is that it becomes an island of really effective support but, as Robyn says, it's unfortunate the rest of the world isn't like that, it would be lovely if it was. So, I think it's about keeping a variety of settings to the variety of needs that we have, it's about educating society, as Robyn, said, but it's about making sure that everything is led by the autistic voice.

Thank you, Dean, are there any other panel members that want to say something about this particular question before we move on to a different question. Yeah, I don't actually think… sorry, I don't actually think that mainstream schools are set up to meet the needs of autistic students at all. The national curriculum has no flexibility in it to allow for those kinds of social communication lessons, the emphasis on how we need to interact with the outside world, I mean, yes we can be in with the outside world that we want, but the aim is that at the end of the education system that you can go out there in the mainstream world. If you're thrown into it with no resources, you're not learning the skills to do that, you just learn that you fail. I think you need a more protected environment where you can learn those things and that they're given equal importance to the maths and the English. I think just being told to sit down, learn this and try and pick up the social skills as you go along doesn't work, maybe it does if you've got very mild autism and you're able to kind of pick things up, to using your cognition rather than from an innate point of view, but I don't… I don't see how you can be expected to learn academically and learn those social skills at the same time without someone formally teaching it to you. But some mainstream schools do provide that support, I think it really depends on the school, I, you know, agree in part about the national curriculum, but there are some mainstream schools that Dean and I have both spoken at who actually do put in that extra support. And I think, you know, I've met people who've been to special schools and they've been to, you know, good special schools and they've come out and they said well actually I don't think that was the right place for me, and they do, you know, I wouldn't describe them as, you know, you know, that they definitely had difficulties as an autistic person. I think it depends on the person but, you know, there are absolutely mainstream schools who do do it and do it really well, it's not all mainstream schools but it's definitely there are some mainstream schools that do it really well. It's a good debate, I mean um Wenn or Sara? Sara, you look like you want to say something?

Thank you, yeah, I find it really strange that we go through this process of a diagnosis to identify differences in approach in thinking and communication, and then back in school we then spend our time trying to encourage those children to do everything in the way that everybody else does, and it seems very odd. So, I agree with Ros that some sort of flexibility in terms of allowing assessment and learning styles to be to be managed in a different way. My children particularly, and I've said this on another panel, they learn really well by being absorbed in their own interests and following things in a way that absorbs them and following their flow, and that's where they actually seem to get the most value in their learning by being able to to do that in their own time and space. And that's really difficult, isn't it, in a school environment, in the way that works at the moment. So, I'm not sure what the answers are but I just sense that we were we're… we're missing opportunities here, perhaps, for people that do things in a different way.

Thank you, Sara. Did any anybody else want to comment on these particular questions? Barbara?

I don’t want to but in because I was aware that Wenn wanted to say something as well, I just wanted to reflect, obviously, I used to work in a large mainstream school and we had a very, very good special needs department, I have to say that, I was head of it, and one of the things parents always said to me was you can speak their language, you're the only teacher I've ever come across that can speak their language to them. And that was really powerful for me and I think we're missing that a lot in the education system. I think what's been said about… it's busy and the curriculum doesn't fit in and it is still very much looking at a deficit model, I've been told my son can't have autism because he's not failing in education, which I just find shameful, but he has actually been blocked from diagnosis because school is saying he's not failing and therefore they won't assess him, and so I think there is a lot that needs to change in our education system but not just for autistic people, I think there's a lot that needs to change for all differences, and I think we need to develop an education system that celebrates diversity not shuns it.

Thank you, Barbara. Wenn, you wanted to say something?

Well, just that here in Australia we have quite a large and definitely growing movement called I CAN, two words capitals, I CAN, and the I CAN movement is run by autistic people and we go into schools and we mentor autistic kids, right through main screen from primary to secondary, TAFE and the beginnings of uni in some places, and we always have a school teacher present during those times, so we're also modelling to the school how to relate to autistic people and this is a very diverse autistic people, some people who don't speak using language, they use a light writer to type which gets converted to speech, and so on, so it's quite a diverse group of people. And so it's being modelled both to the student and to the school and that's… it's just taking off, it's just just been amazing. And for two years I worked for the South Australian government as part of a team for, it was called it was called a high needs, whatever, and we went into schools and again modelled and practiced and showed schools with the teachers, how to relate to the kids that were… the autistic kids in their class. And, yeah, the divergent kids, the ADHD kids, kids that are dyslexic, like I'm dyslexic, and all those sorts of things were being modelled so that people could see what needs to be done, rather than just read it from a book, or or whatever, we got down there and yeah. And I'm sure that's the sort of thing that could happen in the UK too, and around the world really, so that's it for me on that, yep.

That's really helpful, Wenn. I can see Dean wants to speak, and then Robyn.

Very quickly just about what Wenn said, I've noticed, and of course autistic people have existed in the teaching profession since it began, obviously, but I'm noticing through the work in recent years I've done in schools, there's a growing number of teachers who are coming up to me saying I'm just realising I'm autistic or I've known I'm autistic for a long time and that's why I've got into teaching because I want to help other autistic students, more autistic teaching assistants, I'm meeting autistic head teachers and I think there's this new wave of autistic folk going into teaching who are aware they're autistic, who own that they're autistic and are proud of it, who I think will make a real change in the system, as well, as Wenn has said, I think in the UK that's happening it's coming.

Thank you. Robyn?

Yeah, I just wanted to say a couple of things, so one of them was I wondered, Annie, I don't know if it's the right bit in north London, a bit you worked in, but the Hendon School had the Harp Centre and I was involved with making a little, well, I'd presented a documentary about it and you might be able to talk about it because you, because that’s your neck of the woods. I also wanted to say, I think Saeed, was asking about why we say we dropped out, well, obviously, everyone's different but basically, for me I got kicked out of school, they said, basically, that they, you know, if I came back then they'd expel me, basically that's what they said, because my behaviour was very difficult, I thought a lot of the rules were stupid, I felt very overwhelmed and I didn't particularly… the one place I felt safe was the IT room and also there, the school underestimated me, so I'm good at coursework and my mum fought really hard for me to be in a… there was two groups of students doing the um doing a GNVQ in leisure and tourism, which is like GCSEs, and one group had a cap of a C grade, so you could only get C grade or lower, and one group didn't have a cap, and my mum fought for me to be in the second group, and the school was quite resistant but my mum fought it and I got something like 83 percent in the exam, and it was the … like the… one of the senior teachers made me a card and thanked me because she said well that's like one of the highest scores anyone's ever got, but by then the damage was already done. So, I do think that… I do think, yeah, the national curriculum definitely is, you know, there's a lot that kids now have to do but I think that, yeah, I think it's about, like, having, like Dean says, there's a lot of autistic teachers now and if you've got teachers that understand you then I think that's good. But I think also, so my mom is on the spectrum and she was a secondary school teacher and she was very good at, you know, answering kids’ questions because she's very… she taught biology and she also delivered some of the PSHE curriculum, which is called something else now, I think it's called SRE now but, you know, sex and relationships and all that stuff, and she was just unflinching about it, she'd just gone with it and that was one of the strengths maybe of being on the spectrum, but it meant then that kids could ask questions and my mom wouldn't be embarrassed, if she didn't know the answer she'd say I don't know, if it wasn't appropriate she would say that, but the kids knew that they could ask questions and my mom would not give them the sponge inquisition, she'd answer the question and leave them alone and yeah, that, I think, that was one of her strengths as an autistic teacher. So, I agree with Dean and yeah, just I wonder if Annie might be able to talk about the Hendon school, because that was a mainstream state school and they had what seemed like a really great autism provision. Annie, are you able to enlighten us about that? You’re on mute, you're mute.

Yeah, well, I don't want to take up too much time but just to say that it's a large standard comprehensive in north London where they had an autism provision which was built within the the school. And I think one of the most successful aspects of it was their very strong peer support program, where they developed the underlying skills of students within the mainstream part of the school, who would then spend a lot of time with students from the provision. And that has rolled on year on year and it's one of the most successful aspects of the provision.

Thank you, Annie, that's really helpful. Now we're going to … this it's just flown past the last hour and a half, I'm going to … one final question for each of you and that is are there any recommendations for books for autistic young people to read about autism to help their understanding.

I'm really glad that you've asked that verbally because it's a lot easier for me to say that than type it. I too find typing very difficult and my squint is being a pain today, so I have to keep covering that eye, yeah, so Jennifer Cook O’Toole, she's written a couple of books, one of them is called something like ‘The Secret Social Rules Book’ and there's another one, there's another book called ‘Asperkids’ and another one that's specifically aimed at girls on the spectrum and so her pen name is Jennifer Cook O'Toole and she's published by Jessica Kingsley publishers. I think that's really good. I also think ‘Freaks, Geeks and Asperger's Syndrome’ which came out in 1998 written by Luke Jackson, when he was 13, that is still a really useful book, I mean, maybe it's a little bit dated now but I still think that, you know, when I was like 18 and I read, you know, like, because when I was, I think when I was 15, my mom gave me a book about an adult who was on the spectrum and I only got up to about when they were 20 because I couldn't really imagine past that, so when I was 18 and I read Luke Jackson's book and he was 13, well I knew what it was like to be a 13-year-old because that was not that long ago when I was 18. And he's now written a new book, sort of like a follow-up, which I think is called ‘Sex and Drugs and Asperger's Syndrome’ which is really good. Also, and I can't remember what her surname is, but a lady called Sienna, a young lady, she's 16 has had a book published by people, you know, she's on the spectrum. There's also a few sort of, I don't know if anthology is quite the right word, but there's a group of sort of profiles of autistic adults which I think Wenn is in, and it's ed… it's I think edited by Temple Grandin and and it's called ‘Different Not Less’ and that's published by the Autism Asperger's Publishing Company. That's probably enough book recommendations for me.

Brilliant, Robyn, thank you for that.

But Jessica Kingsley's web page, Jessica Kingsley, all the books for kids are advertised on there, you can go in and you can, if you're going through Google you can actually begin you can read bits of them, so you can see whether they're suitable. Yeah, and I've got a couple of books out for kids that are Kindle, you can… that talk about friendship and actually goes into detail about how to recognise and separate friends from abusive situations, so they're quite useful.

Yeah, definitely, and any other recommendations people want to make before we kind of wrap up? Dean.

OK, the wonderful Emily Lovegrove, who is just her name matches who she is, she's just the loveliest, is an autistic practitioner in supporting children who might be being bullied and she's put a book out this year called ‘Autism, Bullying and Me’ and it is aimed at autistic teenagers who might be experiencing that, but I think there's lots in there that's useful even for those autistic youngsters that might not be experiencing that, it's about… it's about surviving in the world, it's it's about making sense of who you are, and celebrating it, and making sense of what your needs are, understanding other people and where they're coming from, but in a way that's really empowering. And what I'd also say, at risk of being very saccharine, when I started to understand about being autistic it wasn't books I went to, it was hearing voices from the mouth. So, I heard autistic speakers and I through the job I did at conferences and events, that really shaped my understanding of myself, and I have to say when I first heard Wenn Lawson speak in 2008, pretty life-changing for me. I know that a lot of people look at Temple Grandin as their sort of autistic god, for me it's Wenn and so I'd say anything from autistic people, for me, has been life changing.

I agree with Dean, yeah. Any final points, Barbara?

Yeah, if I can just echo what Dean's saying, there's a load of really good blogs at the moment out on the web from autistic people and they're really short, sharp life experiences, just really good reads.

Thank you, thank you. And I think Ros was asking about the titles of Wenn's books, I don't know if anybody in the chat… I've just put a link to the JKP page of all Wenn's books, so, looking at this we've got ‘Transitioning Together’ ‘Older adults and Autism Spectrum Conditions’, ‘The Autism Spectrum Guide to Sexuality, Relationships, Gender Identity, Sexuality and Autism’, ‘The Autistic Trans Guide to Life’ and then I think this might be not just Wenn but a few other people, ‘The Guide to Good Mental Health and Autism Spectrum’ and then ‘Inclusive Education for Autistic Children’ but there's there's lots of others as well. So, it might just, I hope you don't mind me saying this Wenn, but you also… your earlier books are published as Wendy Lawson, so there's things like ‘Life and Learning with Autistic Spectrum Disability’, ‘Life Behind Glass’, ‘Aspie Poetry’, ‘The Passionate Mind’, etc, etc, there's lots of them.

So, yeah, and also I'd just like to echo what Dean said that yeah, Wenn, I mean you're a real big inspiration to me and you've been incredibly kind to me over the years, and I think it's really important like you're just you're so open about everything, like, I think, particularly being trans, I think that, you know, like, there's a lot of people out there that are really going to be struggling and you're, like, a light to them. So, thank you because you're really important. Oh, lovely. And also Wenn’s videos recently of the teddy bears picnic and explaining autism to the teddy bears, I think is a fabulous idea for young people, so I'd signal people to that as well. Yeah, fantastic and we've gone past two o'clock, I could have stayed here for hours actually, listening to you and that's absolutely genuine. We'll have to organise more events like this actually, but I just want to finish by saying thank you so much to everybody on the panel, Robyn, Wenn, Sara, Dean, Barbara, Saeed, Abdullah and also to everybody else who's been helping organise these events, we've had our chat facilitators Annie, Lila and Maria, and in the background we've also had Pete and Sammy helping us with the live captioning and all sorts of other technical issues, and, Sarah, thank you so much for all the liaison and enabling Abdullah and Saeed to come here and talk. Abdullah and Saeed, a special, special thank you to you as well. We are… we will have recorded it from one o'clock onwards, so we are going to put all the recordings on our ACER website, Pete's been amazing at uploading them onto YouTube, so we’ll put them on the ACER website. And I think you have contact details, all of you, if you want to contact us, and you've got any ideas about any future events we should be organising as well, we’ll happily receive that. Thank you very much everybody and thank you to all the participants for coming and for joining in and for being so interactive.