All Things Autism – Autism Reality Experience With Chelsey Cookson

Hello, this is Anna Kennedy at women's radio station talking all things autism. My guest today is Chelsea Cookson. Hello, Chelsea, and how are you? Hi, Anna. Very good, thanks. How are you? Yeah, we're good. It's really hot here at Covent Garden and I've just come back from St. Ives where it was hot, hot, hot, and I just love that place. I've never been to St. Ives, it's so beautiful. I can just so recommend that you go there for a holiday. We're hoping to go there again next year. We were there because we were doing our Autumn's Got Talent roadshow. We had time, lots of standing ovations and worked really well with Kids R Us. Phil Barnett, who is one of my people strictly pals. 3 years ago we did the People Strictly and we always said that we were going to do something together. So finally we put a show together and what a show it was. I promised Phil that I'd talk a little bit about Kids R Us. So Kids R Us are at St. Ives. They're a in a theater and they've got their own theater and it's beautiful. It's an award winning youth theatre company dedicated to getting young people involved in the performing arts, supporting their development and the wider community. They have over a hundred children, teenagers and young adults and they produce the most wonderful shows. They actually opened our show for us with Mary Poppins and also they sang Fat Sam's Grand Slam, which was great. So. So we're here to talk about the autism reality experience. But before we talk about that, let's talk a little bit about why you're involved with autism. Chelsea, the reason I got involved with it is because my son is on the spectrum. So it was really important for me to be able to give a parent's perspective with the autism reality experience. Yeah. So how's he coping with the heat? Because I know my son is just not coping very well at all. He. Yeah, he struggles with the heat, the bright lights, just the general not being able to cool down. He also doesn't like wearing sun hats, which I know would really help him, but I can't get him to wear a sun hat. Yeah. The strange thing with Angelo is that we do a lot of walking, as you know, and when it's really, really sunny, we might have done that route about 10, 20 times. But when it gets so sunny, it's almost like he's doing it for the first time. So he holds onto my arm as if he's almost going to fall over and it's Just because the sun is so bright. So obviously it's affecting his sensory def difficulties, so it's a bit tough, but, you know, we're getting through it. So I believe we've got quite a few more weeks to go. So I'm loving it during the day but not loving it at night. No. Makes sleeping a bit tricky, doesn't it? Yeah. So we met about two years ago at Brunel University and you brought along the Autumn Reality Experience bus and it just blew so many people away. So do you want to talk a little bit about the background? Yeah, yeah, of course. The company that I work for is called Training to Care, and we're a training provider predominantly for the health and social care sector. Okay. We initially started out with a. An immersive experiential learning program called the Virtual Dementia Tour, which has been really successful and lots of people will have heard of it and it gives you an insight into what it's like to live with dementia. Okay. And because that become really successful, a lot of our customers who we provide care training for, who provide autism specific services services, asked us to put something together for autism. So we did loads of research, we had a steering group involved. We involved a lot of people on the spectrum because it was really important that it was reflective of what they wanted us to get across. And we put together the experience that you know and you've been through today. Really? Yeah. Very strange experience. I was just looking through some of your feedback that you have and I just wanted to read a couple out from parents that actually, you know, had this experience. And I know dawn, one of our charity champions, absolutely blew her away and she came out in tears. So Janice said that the actual, really Reality Experience part is a huge eye opener into what it's like to be autistic. I came away thinking that my little boy is a pretty amazing dude. And dawn said, real tears of emotion when going through this amazing experience. I took my autistic son into the experience with me. Needless to say, an insight into how he feels on a regular basis really moved me. When we came out of the Experience, I just kept crying every time I looked at him for a long time after I welled up with admiration for his coping mechanism. There were tears of realization, tears of feeling a little of what he feels. He actually seems relieved. I felt it too. I wanted just to keep hugging him, much to his annoyance. If you get the opportunity to go to this experience, take it. And I would definitely recommend that people take it. So we actually took it to Basildon in Essex, where our charity champions, dawn and Keith and Aston based. And we worked with the fire service. So do you want to talk a little bit about what we set up and some of the feedback we got? Yeah, it was set up by dawn and Aston after a pretty frightening experience that Aston had when he came into contact with the emergency services. So dawn wanted to raise awareness among the emergency services. So we took two of our autism reality experience units down to the fire station and they hosted it for the. The police, the ambulance service and the fire crews down there. We had quite good feedback, didn't we? Had quite a few people that came along. Was it something like over 100 first responders came along on the day? It was something. I think it was between 120 and 130 in the end. Yeah. All different people working in all different disciplines within the emergency services. We had control handlers, we had frontline police. So a wide range of people did come through and we did have good feedback and it was a really. It was a really good day. Okay, so let's talk a little bit about what the experience is. So we're talking about the autism reality experience and what it's like to have a sensory overload. So can you talk through what happens when somebody first approaches you? I know you give them a form and they've got to fill it out. So can you just talk a little bit so people can get a little flavor about what it's like? Because they might be interested in booking one of your buses for their school, for their college, for their university, for their workplace. So talk a little bit about that, please. Yeah, so it's. The great thing about it is that no matter what your connection is with autism, it will be appropriate for you. So whether you're a parent, a professional, working at whichever level, you'll get something out of going through it. So it involves going into the mobile unit, putting on specialist equipment. Okay, so what specialist equipment are we talking about? So it is equipment that changes your senses. Okay. Alters your sensory perceptions. So there's glasses that you wear, there's headphones, there's special gloves that you put on, and then you're taken into the simulation unit. Yeah. And you're expected to watch a video. You're given tasks to complete their day, everyday, daily living tasks. And you're expected to carry out those tasks successfully and follow instructions while subject to sensory overload. Which doesn't. It sounds easy, but it's just so not. No, no one's ever done it. No, it was just that because you're trying to really concentrate on what's being said. But there's all these noises going on, your vision's blurred and you've got these gloves on and it's just like. And then the time's over and you just haven't completed any of the tasks. It's really quite difficult. And then you sort of come out and you just think, what just happened there. So if you. If our children and adults are going through that experience every day, you can imagine how hard it is for them and how they've got to adapt and how they've got to, I suppose, create strategies for themselves to get through the day. Yeah, yeah. And what we find when someone on the spectrum goes through it, they perform much better at the tasks than people who are not on the spectrum. So that's quite interesting. So when people on the spectrum have actually gone through the experience, what do they say to you? Do they think you've got it right? They do, yeah. We. A lot of people tell us we've hit the nail on the head that we've got it right. In the initial days, we did have some really constructive and useful feedback and we made adaptations to it. 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Live laughloveloveladies.club also@womensradiostation.com Women's radio station is a not for profit, community interest company. Supporting women is our passion. We're currently welcoming donations to help towards our running costs to keep this important initiative alive. To donate, simply head to our website. Every little will help. Hello, it's Anna Kennedy at Women's Radio Station and we're back with Chelsea Cookson talking about the Autism Reality Experience. So I'm looking at one of your flyers here and I'm just saying, one to experience what it might be like to have autism. An innovative and immersive training experience designed to give participants an experience of sensory overload. Now, I try to experience as much as possible what it's like for my sons to have a sensory overload. So obviously, you know, Angelo hasn't got any speech so it's difficult for him to talk to me about what impacts on him. And I think because we're always looking, searching for their, you know, maybe looking at their eyes, you know, if they're ill. I always know that the back of his neck gets very hot. He's got a vein on the left hand side of his face that is slightly raised and he lies down and Angelo never lies down. So I always know that there's something not quite right with Angela. So us mums, we're always looking to see, you know, what we can do to help our sons and daughters. So, yeah, so the, I find that the Autumn Reality Experience is a fantastic tool that should be used by schools, that should be used by universities in the workplace. So if somebody wants to book the experience, what's the process, what do they have to do and where can they contact you? The Easiest way to book is probably to visit our website, which is www.trainingtocare.co.uk. okay. If they take our contact number from the website, they'll get through to our sales and bookings team and they'll be able to offer some dates and any further information that they might need. Okay. And interestingly enough, we do actually have an experience that's bespoke for school. Okay, so the whole. So can you talk to me a little bit about that, then? So what's the difference between the domestic one that I went into and the schools one? Yes, the one that you went in is based in a domestic setting in someone's own home. So that can be relevant for anyone. Okay. Whereas the school version, the actual filming was filmed in a school. Okay. And the. We actually involved actors in. In this one. They are all kids on the spectrum as well. The actors and the film that we produced actually went towards their GCSE Arts award as well. So that was really interesting. They were amazing as well. And the debrief side of it afterwards, so the knowledge base and the methodology behind it all, it's all around education settings. So what teachers, TAs, even parents, could do to help support children on the spectrum in schools. There's so much that they can do to prevent meltdowns and understand sensory behaviours, and that's what that particular session focuses a lot on. So you have like the three minute experience and then you have a longer experience. So can you talk to me a little bit about that? What's the difference? Our taster one that we had at Basildon is kind of a shorter insight. And they can go through that and then talk to one of our trainers afterwards about any particular questions that they have. And. But the full experience involves being available for three and a half hours. Okay, so what do you get for that, then? So you go through the experience, it's a bit longer. It's not quite three and a half hours in the mobile unit. I'll be way too much for anyone. Yeah. So we take a group of 12 people, put each person through the experience, and then afterwards we run a debrief session. Right. And the debrief session covers all about our sensory systems, how they work differently in autism spectrum conditions, and what sort of strategies either professionals or parents can put in place to help somebody on the spectrum to manage their sensory needs. Okay, so what sort of impact has it made on teachers at schools? So I'm taught like, so, for example, do you go to mainstream schools or do you go to special schools or A mixture of both. We can go to any. We've been to a mixture of both. Okay, so what feedback did you get from mainstream. Interesting for me. And what feedback did you get from special schools, or was it any different? I think the. There has been a difference in feedback. Okay. That the SEN schools that we've been to have got more resources available to them. So they're using a lot of the sensory rooms and the resources that they've got, but they've never really understood why. Yeah. Okay. So the autism reality experience helps them to understand why they're doing certain therapies. Yeah. Because I've spoken to school and said, oh, we'll need a room, we need to get a bubble tube, we need to get this and that. But I don't think they understand why. I just think they've seen a picture and let's put that in there. And they think it's going to suit everyone, but it doesn't suit everybody because all the children are so different from each other. So I think what you're talking about, there is another reason why that people need to book the August and reality experience and understand why what the sensory needs are and what equipment works for one child, it might not work for another child. So that, for me, that's really interesting. It's really true as well, because you could put. And I've seen it a lot in. Because my background is in the care sector, where you would take somebody to a sensory room and they flick everything on and all that's doing is just recreating the mobile unit that you've been through. Yeah. I went to a place in Reading. I won't say where it was. And it was specifically for kids and adults with autism. And it was a place. A place where they could run on and, you know, let off steam. And they said, we've got a sensory room. So I thought, okay, then. So I said, oh, Angelo might be interested. So we walked into the room. It was really small. It just had a bubble tube and some sort of soft cushions and things. He walked in and he walked straight back out. He just wasn't interested. And they were a little bit like. And we had to pay extra for that just for him to walk in and out of this room. And they just didn't understand why he didn't stay in there longer. And I thought, well, you haven't got anything to, you know, capture his imagination or capture him. It's just because you've got a bubble tube in there and a few cushions doesn't mean he's going to sit in there, you know. Yeah. You've kind of. You've got to be able to identify someone's sensory needs and know how to address that properly. Yeah. And like you say, it's got to be person centered around the needs of that individual. So the. The knowledge side of the autism reality, experience offers that. It teaches people how to identify sensory behaviours and, like I said, what interventions you can put in place for them. So the mainstream school, did it open their eyes and change approaches, would you say? Yeah, yeah, definitely. One thing that we talk a lot about, particularly with the school experience, is the need for children to move. Okay. They need regular movement in order to be able to remain alert and focused. They learn better if they have the opportunity to move more. And particularly a lot. In mainstream schools, the children are expected to sit and concentrate and be still for too long at times, and it's not possible for them. Yeah. We've got kids that come to Hillingdon Manor School, so they travel in from about 19 different local authorities and they sit in a lot of traffic, so the last thing they want to do is sit down at their desk when they get to school. So, you know, we'll give them a bit of aerobic exercise or a bit of dance or go on the trampoline, or we've got equipment outside so that they can get rid of a bit of stress and then they can sit down and be in the right headspace for learning. And some people don't get that and it's just, well, you've been sat in a car for an hour and the last thing they want to do is sit down again and, you know, be taught whatever subject matter. So, okay, so somebody rings you, they book. So how long does it take to set up an autumn sensory bus? Or is it the whole day? Is the process for the whole thing? Is it half a day? So we normally, if we take the mobile unit, doesn't take us very long at all to set that up. Okay. But we do need a suitable room to accommodate 12 people to facilitate the debrief side. Okay. So as long as you've got the parking space and a room, we can come along and pretty much offer it anywhere. Okay. The. The group of 12 going through the full session takes three and a half hours and we can do two of those in one day. So we can put 24 people in one day through the full training experience. And it goes all around the country, so we cover the width and breadth. We go to the Isle of Wight and as far up as Inverness. Yeah. We've just discovered that we'll both be going to the Isle of Wight in April, April 29, because Spectrum are actually putting on the first sort of festival. So we've been asked to take 10 of our autumn's Got Talent performers to the Isle of Wight. And you've been asked to take the Autumn Reality Experience, so we'll both be in the same area at one time to be able to listen to our singers, because they're just so amazing. I just love them. Yes. So we are preparing for Autumn's Got Talent Roadshow now for the Wirral. So we'll be there in November. So we're taking 10 of our performers from the main show and then we've got 10 local performers, so they're practicing already, rehearsing, getting ready for November. So we're going to be at the Floral Pavilion. So all of this information is on our charity website, which is www.anna Kennedyonline.com. you can also see our workshops that we've got going on with Paul Isaacs. We've got some going on in September, some going on in October, and then we've got the Autism Hero Awards, and that will be on October 14th. And it takes place at the Radisson Blue, which is in Marble Arch. So this is our third year, so we've still got space for entries. The closing date will be September 5th. There's 12 categories, so if you look on the website, you'll see the 12 categories. So you need to choose someone who you feel goes the extra mile. So you never know, you might get someone who nominates the Autumn Reality Experience, thus you're going the extra mile. So it could be a teacher, could be a carer, could be a mom, could be a dad, could be a business, could be a reporter, because sometimes reporters don't write a that good articles about autumn. So we had last year a reporter from the Guardian that was nominated. So, yeah, if you have A Look, there's 12 different categories. So then the judges have the difficult task to choose three nominations out of each category, which is really hard. They asked for an extra hour last year to judge it because they found it so difficult. So we have 36 finalists on the night and then we choose a winner, which is the really. It's a really lovely night. We have a couple of our Autumn's Got Talent performers that perform as well. We have one of our magicians as well that's autistic, that works the table. So if you can get along, just check the charity website and I just want to say thank you, Chelsea, for coming along to be my guest today for my regular slot on autism and I hope to see you very soon. Thank you for having me. Thank you. You have been listening to Anna Kennedy on women's radio station talking all things autism. If you'd like to listen again to our autism slot at the presenters page on the website. So the website is womensradiostation.com we're on Instagram and we're on Twitter womensradiostn. Or if you want to contact us through an email, you can contact presentersomensradiostation.com welcome to Women's radio station, the voice of women worldwide. Hungry an average woman eats about 2 to 3 kilos of lipstick in her lifetime. Women's radio station, we want to hear from you. This is women's radio station. You're listening to Avril Price with Kitchen Sink Spirituality. 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