Jules-AutisticRadio.com: Hello, everybody. And thank you for finding us. Thank you for tuning in and thank you coming back. It's obvious to us now that we have a loyalty amongst you, a group of people who come to find out about what we're saying across the different subjects that we have. Not everyone's going to be listening to a podcast about ABA or behaviorism. Not everybody is going to want to listen to a podcast where we talk about our Facebook groups and pages.
There's something for everybody there on Autistic Radio. Happily, I'm joined today by the guys over at, , Autistic Knowledge Development. Sean is with us. , Sean, you've been really involved in a project recently supporting people after their late diagnosis. Remind us how that's gone. Sean-Autistic-Knowledge-Development: Yeah. , hi Jules. Hi Morris.
, . We've been lucky enough to get continuation funding for our Embrace Autism post diagnostic adult autism support project, which we run in conjunction with National Autistic Society, Scotland, we've been able to continue the group support, over six weeks for an hour and a half each time with a theme fairly informally. So each group is really driven by , who happens to be in the room and where the conversation goes.
Different to what we did last year taking on feedback the kind of main bits of feedback we got, well, yeah, this, this has been great, but what next? So taking that feedback we've set up a closed and heavily moderated Facebook
group for Embrace Autism, which has been brilliant . Developed a life of its own and that's been great to see from there is actually as a community, how much we support ourselves and also to see the friendships that are starting to form as well, because I know in my own journey of kind of accepting and then learning to love being autistic, a big part of that was getting to know other autistic people. Jules-AutisticRadio.com: So this is a closed group just for the people who've experienced.
Autistic knowledge developments program for supporting after you realized you're diagnosed, can people join that group from the outside? Sean-Autistic-Knowledge-Development: No, they can't. We kind of really, really wanted to without sounding pretentious, to curate a community and by making sure that everyone that's in the group has been through the six week support program. It means that everyone is.
roughly more or less in the same place and is in the same head space and has had the same opportunity to explore what it is to be autistic over six weeks with a group of 10 or 12 other autistic people. When you finish the six weeks of support, you get a email from one of my colleagues with information pack and slides and notes from the groups. And you also get an invitation to join the Facebook group.
, I really struggle with social media that the whole, the whole idea of even going on Facebook was making my, my palms sweat when I was thinking about it. But actually I've just joined. Facebook specifically, just, just to be a part of this group. It is it's a quiet corner of the internet. And one of the reasons why we've spent quite a lot of time and money getting really good autistic moderators for this is to make sure that we are different There's no trauma dumping on there.
It's not kind of whitewashing the experience of what it is to be autistic, but it's exploring in a positive way. Both the kind of positives and the struggles as well. So everything from, from sharing hacks of how do you navigate going on holiday? Kind of, how do you navigate public transport to kind of stuff that's just more lighthearted, like about sharing people's favorite books, favorite music, favorite films.
Jules-AutisticRadio.com: It's got more to it than just exploring autism, though that's in the background also, it's also a social space where people can just be unnoticed. Yeah, a hundred Sean-Autistic-Knowledge-Development: percent. It's, it's been driven by who joins the group. Smaller, obvious groups of potential friends. So people that might be into gaming, there's already a smaller conversation starting there.
There was a really interesting thread that emerged . Amongst the dog lovers that are in the group. So we're just trying to provide a safe space where people can just dip in and out and can just observe. Or if people want to, that they can actually start to make meaningful relationships and potentially friendships with other autistic people. Jules-AutisticRadio.com: Yeah, I get the sense of that.
People have tried these things before, they've tried various versions of forums and Aspie Village and all kinds of things to, they always go through phases of being more used or less used. There's something quite interesting about your setup in that the people not only have the shared interest of autism, but They have also been primed with this kind of ladybird book version of autism. Some places to start from. Here are some ideas, here are some words, we're going to talk about them.
And then everybody's on the same page kind of thing when they come to your group. That's a very interesting thing to me. , that's Sean-Autistic-Knowledge-Development: We felt it was really important that people had a sort of kindred spirit mentality that joined a continuation of people who enjoyed what they got from the group to have a version that's a bit more organic and just allows conversations to happen more naturally. Rather than structured format of six themed weeks.
This is more designed to be a jumping off point for people to start to build their own autistic communities. Upfront at the start that at the moment, we only have funding to run it until May next year. We've got some interesting news about maybe it being able to continue further, but we've been very clear that actually this is just a tool to start forming your own networks and friendships we're hoping that people will just see this as a another tool for meeting more autistic people.
There's a degree of safety checking. We know who everyone is. We know that they're going to be nice and polite with other people, which I know sounds like a small point, but it's a huge jumping off point if your experience of socializing has been negative, or if you naturally are quite distrusting. of other human beings.
We've done our best to try and get the balance between it being engineered to be a safe and welcoming space, but also for it to be whatever the autistic people that are in the online room wanted to be Maurice-ELAS-Autistic-Group: if it's, um, got a pattern of what it does, a rolling pattern, I mean, that's a, an online group doesn't have the. Problem of times, specifically the times to do things out like a, doesn't sound like there's a live chat element, but still a way that it keeps going.
Kind of something already started. There's a potential answer to the cliff edge of folks that keep doing it, having started it. And I have some answers to these cliff edges of when things end. The dauntingness of trying to initiate something new to start. Some of them would always be heavy on me. I can't initiate one off things socially, I need to follow. So cycles that are ongoing so that you're never having to each time get other folks to agree and use it to.
Do the thing that's convenience for them, et cetera. Sean-Autistic-Knowledge-Development: Yeah, Morris, that's a really good point. And it's something that we gave consideration to because we were very conscious, even for how my own feelings are about social media, about not kind of creating overwhelm. So we have very specific. Points of the week where we share that there's going to be activity. We have live comments turned off for most of the week to allow moderators to do the job.
And also to create a bunch of mini events we've got some sections which include, ask me anything. We have a series of yes or no questions. Quite light hearted, that's an easy way. If someone doesn't know what to post to start to join into the conversation , on the thread. We've just started doing a series of Facebook lives, to showcase that being autistic doesn't have a single voice.
Doesn't have a single look, can and is any and all of us to basically try and dispel some of the myths and stereotypes of what it is to be autistic. The first person that we had on was a actor and musician. Tom Ury from Paisley in Glasgow. He was later in life diagnosed autistic, someone who people might recognize from things like Still Game and River City well known programs on TV. When Tom came on was he's a really down to earth, Honest, likable, engaging, funny person, but very, very real.
It was very helpful for people in the group to see , they've had this amazing career in TV and music, but actually has had very real struggles. In the last few years that he's realized that he's autistic, but actually life starting to make sense. We really want the Facebook group to actually to not only help break down stereotypes that we might think society has, but also to break down our own individual stereotypes of what it is to be autistic.
And we've had a brilliant woman called Katie Forbes, who set up an organization called Autistic Flare, and she works also heavily in media. She helped out loads with the marketing for the videos for the first phase. On Instagram. She's got thousands of followers, at Autistic Flare and she gives really, great everyday advice of what it is to be autistic for her and, and how she's found life navigating as an autistic person. Jules-AutisticRadio.com: That sounds great.
That sounds just the sort of follow up people who have been asked to look at their own autism with support. In the short groups that have been offered by various organizations, it looks as though what you've done is the full package. You've followed people up and made there a possibility to be followed up. We've had some thoughts about this and we've tried to approach it in a slightly different way to yourselves. We're going to create, a regular time every Sunday.
Where people who are looking for something after their late diagnosis groups to join with others and fulfill some of the benefits that you've been describing as a radio, as an audio only, as a text and voice. Enterprise, where in the same way you've been talking about people can discuss their own ideas, but then I'll hear other people discussing them. So that's something we're putting forward as an addition to what you're doing.
Sean-Autistic-Knowledge-Development: I love the sound of that very into us as a community, being able to hold up mirrors to ourselves. A kind of group situation, that's just entirely. Autistic people, I personally always learn as much about myself as I do about what it is to be autistic. And I also find these moments to be energizing for the rest of the week.
Opportunities where you can actually, first of all, feel normal by, there are very few points in life where as an autistic person, you can actually sit and say. , I am what is deemed to be normal, whatever that is in this room, on this website, on this radio station. So yeah, I think that's brilliant. And I just think there needs to be more of it. Jules-AutisticRadio.com: Yeah, I agree.
Everybody tries their own different flavor on this and different flavors meet different parts of people's needs. And potentially. It is possible for people to find different versions of support. And use them as a portfolio for themselves, somebody who's late diagnosed might be already in your group, but they're also looking out to more Facebook groups and that makes a difference their lives, or they might be involved in an audio project as well.
It's, it's giving people options and opportunities, isn't it? Sean-Autistic-Knowledge-Development: Oh, a hundred percent . If you've met one autistic person, you've met one autistic person. And whilst the commonality that we'll all have here is, is that we're autistic, we're all unique individuals. Support doesn't necessarily have to say. Support above it. Support can be tuning in every week, religiously, on a Sunday.
To your show, it could be when you've had a bad week that you tune into it, or when you need topping up, you might've had a bad day that you tune into it. And one of the things that, that we're very conscious of is Scotland's better than a lot of countries for autism support, but it's still a long way from what there should be for all autistic people everywhere.
And I always take a pragmatic approach I would rather think, right, okay, well, let's work what we've got in front of us and let's make the best out of what's currently available. You phrased this as potentially being part of someone's toolkit, I think it's an important thing for people to realize.
Because part of your toolkit might be even going and spending time with your, uh, animals with your cat might be going out with your dog to spend 20 minutes in your local woods, in your local park, by your local beach, and all of this stuff is really, really important for both your mental wellbeing and your physical wellbeing. Maintaining. Mental and physical wellness as an autistic person.
I personally believe that we're not destined to constantly be in the midst of clinical anxiety and clinical depression, but we need to engineer around us a life and some support structures that means those things are less likely to happen. Those things are less likely to be permanent features of our lives. Jules-AutisticRadio.com: It's a bit of a surprise to me when you say that previously Autistic Knowledge Development had feedback about this cliff edge as Morris describes it.
You get some support for a little while and then suddenly you're bereft and you have, as an organization, as an autistic professional organization, Have taken that piece of information, run with it, and created something when you've come back to a similar scheme this year. But I haven't seen that being produced by all the other beneficiaries of the money that you got to seed your initial scheme, your initial support package. Why haven't other beneficiaries done the same as you?
Sean-Autistic-Knowledge-Development: There's, there's a couple of levels to answer that your autistic radio colleagues making the observation that myself and Lila operate. , our organization in a very autistic way and Lila and I have both owned that we like to be over everything. So we'd like to be involved in the design and we like to be involved in the delivery. And that's a point I'm, I'm.
Maybe come on to later if we have time today, but I think the difference between why we've done something. Being kind of autistic and owning being autistic is we actually want feedback. And I don't know if any, anyone listening has ever designed anything. Feedback. That's not always a hundred percent positive is actually the most useful feedback because it gives you something to do. It gives you something to change. It gives you something to engineer.
Yeah. And whilst it was positive feedback saying, yeah, this was great, but now what next, that, that really got us thinking. And there was a few of the groups that we spoke to at the end of it said, obviously working with data protection, is there a way where we can check who's interested in our group and can we set up a WhatsApp group? One of the real differences . If someone asks me for feedback, I give them feedback nine out of 10 times. They don't want to hear the feedback.
And I think that's the difference between us as an organization we know we're not perfect. We try to do the best job that we can, and we know that everything is always a work in progress. We could have sat back because we had the first phase externally evaluated, that's going to be published later this year at an event in Holyrood and we could have sat back and said, yeah, well done, pats on the back, everyone. But There's always more that you can do.
And until we live in a world where the NHS isn't broken and social services, isn't broken, it's my belief that anyone that's working in and around the third sector. So that means social enterprises, charities, voluntary groups. There's always more that we can do to help our communities. Jules-AutisticRadio.com: I'd like to go back in time. I could say this could be, this could have been completely different.
Hundreds of thousands of pounds have been put into a late diagnosis thrust and the results have been that the majority of the organizations have ignored the knowledge that was available right at the beginning, which was that autistic people said it's okay to start us off with these flashcard based introductions to autism.
In groups over a period of weeks, but what we actually need is networking and something a bit longer term to happen so that we've got something after it and all the organizations knew that right at the beginning, because they've had that feedback from the previous year and then when the money was handed out.
There were really specific guidelines given about taking into account autistic people, giving them a seat at the table and making sure that what was designed this time took into account those. And the biggest thing they could have done was what you did, have some kind of follow up. All the information was there, but they didn't do that, even though the autistic people were saying to them that that was the most important part of what they were doing. Why didn't they do that?
Sean-Autistic-Knowledge-Development: I think it's an interesting one. And I can only talk about myself and Lila's experience and our wider kind of team of colleagues here. And I think that comes down to confidence and inside I am laughing my head off at myself because for someone that might've seen confidence in various points in my life, particularly various points in my career. I, I really lack confidence, but actually I'm talking about confidence in what we do.
Now, myself and Lila are two autistic people. We have a wider team, which includes more autistic people, but we're still only a group of autistic people. So everything that we do is. Developed, tested, co developed, tested again with our fellow autistic community. And when good ideas, when there's a clear demand for something emerges from our autistic community, we listen, we adapt, we change. Now that takes a degree of confidence in who you are and what you're doing.
To be able to say, we're not going to get it 100 percent right all the time. We're trialing out something that we think works from learning, from evidence that we have elsewhere, doing something similar, but this is something new that we're doing. Not accepting the status quo, looking at the current state of the nation of what support is, and more importantly, what support isn't there for autistic people and listening to people and taking the autistic community.
With us as much as we can, because again, the autistic community is as disparate as any community that there is, but listening to the voices directly, we support and in particular, unpicking any negative feedback. rather than being kind of huffy about it, we've said, right, okay, like, great, cool. This is something that we can work with. Let's see what we can do kind of better here. Is there something that we can change? Our group support can't be everything to anyone. It's very short.
There's only so much you can cover in six, one and a half hour sessions. But it's a launch pad and as a launch pad, we've got evidence that it works particularly well, but what we're very keen to do, and again, I hope some of you listeners pick up the baton here is if you think something's missing, if you think something needs to happen. Start something, start a conversation. And if someone's got an idea.
To help do something for a bit of the autistic community that either we're not serving or we could do better with, then great, please come step up and do it because the autistic community needs more autistic people that willing to try and do things differently.
Jules-AutisticRadio.com: Compressing your answer, the answer is because the existing community of professionals were not brave enough to listen to some of the negatives and then turn them around and make them pointers to growth and challenge and learning and create a change. They were not brave enough. And secondly, they were lazy. Because they had an amount of money coming in, they could see that if they put this out, this product out, that would fulfill the criteria as far as they could see.
They didn't need to push it any further. They didn't need to be as imaginative of you as you are. They could do what they normally do, get paid for it and walk home. That's my summary of what, why other organizations didn't do what you did. Maurice-ELAS-Autistic-Group: Well, it's daunting for them, I mean, without seeing that there's an example where it had already worked. And they will see an example now if they're listening to you, but that's what happens when someone goes first.
I mean, I, I'm not brave enough to take hugely embarrassing shows for risks that I've, I've not seen evidence will work. So I don't want to. Blame any, uh, professionals for the same failing, uh, I think that, uh, having somewhere to start on what to do and having seen an example that it works, there's no tipping point difference, or should be. Sean-Autistic-Knowledge-Development: I think that was a really nice point, too.
interject there and there's an element of bravery we have at AKD, which is driven by passion. It's driven by something that's quite hard to find words for. Uh, it's not driven by money. It's not driven by power. It's not driven by career aspirations. It's driven by, and I'm going to sound naive here, but actually wanting to change the world, not in.
An egotistical way, but the amount of times I've had conversations with colleagues who are autistic and professionals, and also colleagues who aren't autistic and are professionals, but who get it about what it's like to either self diagnose, self identify that you're autistic to get a formal diagnosis, particularly a formal diagnosis. And if you're lucky to jump through the.
Hoops to get to the process to wait long enough to get to it either, or to have enough money to have been able to afford to have done it privately at the end of it, you kind of left with a bit of paper and it's good luck off you go.
. You can't change your own past, but what you can do is maybe help other people that have been in a similar situation, maybe to have a slightly easier time than you did, or maybe to be able to find some positive information on what it is to be autistic a bit more quickly than you did yourself. It's been really, really cool in the last few months that we've actually met a reasonable number. Of different organizations.
Aren't autistic led that believe they should have more autistic professionals, not just people that are there because they're autistic, but people who are professionals who also happen to be autistic involved in their organizations. Definitely wanting to increase the balance of these people to be closer to the majority, if not the majority in their organizations and starting to realize that actually good intentions aren't enough. You need an evidence base.
You need proof that this works and you need the community that you're attempting to serve to actually feel that you are serving them and that you're involving them and that not only are you involving them, but you're providing opportunities for them to lead. Jules-AutisticRadio.com: I think it's a renaissance of tokenism. They are intelligent enough as a professional group to realize they're not going to get away with.
The original tokenism and they need to reframe it, rechange it so that they still get funded. It's usually follow the money. I think these organizations perceive that if they do not demonstrate that they have autistic people integrated into their structures as professionals, then they will Not be getting money in future.
Sean-Autistic-Knowledge-Development: I think there's some truth in that, but I also think that there are some people who genuine allies, and I'll give you an example that I think there is a lot of truth to what you said there, I gave a talk a few years back at Google campus called doing the right things for the wrong reasons. Lessons learned from embedding social enterprise across the university sector.
And it was stuff at the time that I was doing in conjunction with HEFCE, which is the Higher Education Funding Council for England, and also a big social enterprise supporter called Unlimited. Now it also ruffled a lot of feathers. If you look at all societal and business kind of ethical change that's happened in the last 30, 40 years, it's driven by money. So very pragmatic, I'm a realist, very aware of the world that I live in.
And for me, yeah, it would be great if everyone was doing the right thing because it's the right thing to do. But equally, there's going to be a whole bunch of people. That when they realized there's a kind of financial kind of benefit, a career benefit of doing it will get on board. Now, I would rather people got on board for whatever reason than they didn't get on board at all, because I've encountered quite a lot of situations where when you lift the veneer a bit that it is tokenism.
But actually, if you can even force organizations, individuals who have been tokenistic, Into doing something real, albeit it might be for completely the wrong reasons, then that's still potentially an autistic professional in a job that they might not have had in a more senior role that they might not have had. And yes, there is going to be a lot of cynical kind of maneuvering , but I would much rather that digging in of the heels this is the way that we've always done it.
. Conflating number of years, working in a sector with the lived experience of being autistic. On top of that, then the lived experience of being a professional and autistic. So yeah, , I completely empathize, understand with your statement there. I'd say that there are some people here that are genuinely wanting to make a difference, but again, human beings are herd animals.
And there'll be a whole bunch of people that sit in the middle that start to follow the crowds when the crowd goes a different way as well. And as long as the heading in a better direction, then I'm ultimately okay with that, Jules-AutisticRadio.com: I'm quite willing to make strong statements here. If it gives people the opportunity to put forward reasoned discussions about why they might be wrong. That's kind of the point of me here.
What would indicate to me that there has been a large change. Would be when I see people who have created the status quo being the people who get retired, when I see. Upcoming autistic people, autistic professionals, not being added, but replacing the people who were already there. That's when I will believe that there is a, a true change happening and it isn't just another wave of tokenism, a wave of neurodiversity washing. We have a great opportunity at the moment for structural change.
That opportunity is the cutbacks that are being made. My fear is that the cutbacks are going to take things back to the bone, back to the skeleton, and the skeleton is the rotten thing, and all the flesh that's going to be lost might be the reaching out to autistic groups, might be the inclusion of autistic people. It should be the other way around. It should be that the new and progressive things are the things that are kept.
And the old crumbling arthritic skeleton of the previous decades needs to disappear. Sean-Autistic-Knowledge-Development: Well, Jules, Maurice, if I hadn't been muted then you'd have heard me laugh out loud at points there you were striking a chord there. I was at a meeting with Marie Todd, who's the minister in charge of everything health and social care in Scotland.
She was there to share her thoughts about the Revised strategy for self directed support Scotland, which is the way all social care is delivered in Scotland. And she raised a really interesting point, about how the most important. Kind of factor for getting all these changes with self directed support to happen and also to get self directed support to actually work in the way it was intended , was about culture. So I asked a question and I said, Oh, that's great to hear.
You genuinely seem passionate and enthused about this, which is great to hear from any politician, but when you're talking about culture, Everyone knows ultimately culture means people and your point of it's actually the people that needs to change in a lot of these organizations, because our experience as autistic knowledge development, we've worked with most of the big names, some of them we still work with, some of them we don't.
And every single instance, it's down to culture, which is down to people. Ultimately, you've got people that get it and want to go in a direction, or you've got people that don't get it and don't want to go in a certain direction. Some interesting points. I got a 10 minute answer, she basically wanted. Social workers who were burnt out, who had cared too much, who were too involved in the job to get reinvigorated and re energized.
And for those to be the people, as well as people who have lived experience, as well as people who will be both, kind of, professionals and lived experience. To be running things. And that was her main observation as to why this hasn't worked in the past and why it will work or won't work in the future. Which is down to culture, which is down to people and Jules, I completely agree with you there that there's a reckoning coming in the autism sector.
First of all, it's, it's going to be harder to keep organizations going full stop. As an organization, AKD, we're doing our very best to become part of the furniture. Of this sector, which is why, again, we're very much, everything we do is evidence based we're very much into trying to be helpful outside of our own organization, which might not necessarily seem like good sense, but actually we believe that creating a healthy.
Community of autism support organizations is the way to have a healthy individual autism support organization. So yeah, kind of as much as I like to kind of try and tread the middle ground with stuff, , there is a culture change that needs to happen, and I do agree with you that actually in some cases, people will need to change for the culture to change. Jules-AutisticRadio.com: People will need to change for the culture to change.
That's a very good conclusion for our conversation today with autistic knowledge development. We can go so far in explaining autism to the professionals in its modern way, its modern setting, how we experience it with our lived experience. And those people, they can be allies, they can change, they can understand and accept and implement that knowledge. But, ultimately, the change that really needs to happen in most of the cases is people need to move on and retire now.
People need to move on, stand out of the way, and allow autistic professionals like Sean, like Lila, like so many other people we meet here on Autistic Radio. We need them to be taking the lead in this. Moving from tokenism, moving from structures that are set to Use autistic people as a kind of raw material for a service to sell and move it much closer to the lived experience of autistic people.
Thank you so much for describing these things to us today, Sean, and we'll be, we'll be back with you hearing about everything that you haven't managed to tell us about, about what's going on with autistic knowledge development at the moment. Sean-Autistic-Knowledge-Development: That's brilliant. Thank you. And thank you for listening, everyone. I'll, uh, no doubt catch up again soon.