 Good day, my lovely listeners. You are listening to the Forty Autie podcast. Tune in every week to explore inspiring stories and insightful information that dive head-first into the world of autism and mental health. With all those tantalizing tongue twisters out of the way, let's get into the show. Hello everybody! Welcome back to the second episode of the Forty Autie podcast. Today I'm joined by a very special guest, Lorraine from the Chewygem Sensory Items for Autistics Company. Lorraine say hello. Hi! How are you doing? I'm fine, thanks. How are you? Pretty good, yeah? Just a bit tired as usual. I think anyone who listens to my YouTube stuff and my podcast will know that I'm always tired. Well, in reality that's just a response isn't it? Somebody asks you how you are and you always say I'm fine, thank you. In reality you're probably not. No, it's just a de-fault, isn't it? Yeah, but so I have had a little bit of a sort of back and forth with the company. I think I did like for my YouTube channel I did sort of a review video. He sent me like a box of sensory items and stuff to have a look at my channel and stuff and since then I have been on your podcast, the Sensory Matters podcast. Yeah, I really enjoyed your podcast actually. Did you? Yeah. Oh, thank you very much. It's hard. Oh jeez. I'm the same. I'm the same. I had a cough and a cold and it's just all coming out now. So, do you want to give everybody a little bit of a background on who you are? Who Lorraine is? So yeah, I'm Lorraine. I'm 37 years old and I've got two kids, both who are autistic and I didn't know that I was autistic until the first one started to go through their diagnosis and we've come a long way since then. Jamie's gonna be 16 next week and so yeah, so there's three of us in the family autistic and I do chewy gem. I just kind of run the community. That's my main focus, interacting with people and helping people. So you do like all the kind of social media stuff and taking messages and am I right? Yeah, I mean, we've started to grow because we've been going now for I think this is our 10th year. So we are growing, you know, we've got some more stuff. So I'm not doing as much social media as I did but I try and do a lot of the content and try to answer as many messages as I can because I think it's important that when people message a company there's an actual person at the end. Yes. So yeah, and a lot of people know well, you know, message them you'll probably get Lorraine and if you don't get Lorraine, you can always ask for Lorraine and then I'll answer. Cool. Awesome. And I was just gonna say like it's quite interesting that you mentioned what when did you find out that you were autistic? Did you just sort of go along to get the diagnosis and sort of think about it or? For a while, I kind of umdened my own head because I was going through the process with my first child and I kept thinking, you know, we're very similar. This is very much like me. So when I finally agreed in my own brain that probably I was autistic as well. I started to make notes on my phone of all my traits and every time something was quite obvious, I would make a note. So did that for about two years. And then I couldn't decide whether it was important to have a diagnosis or not because a lot of people are self diagnosed and they don't need the actual diagnosis. But I got to the point where I really needed to know for sure. Yes. So I went to the GP and asked for a referral. And it was very difficult because they didn't want to refer me because they don't understand why an adult would want a diagnosis. But I got my referral and I was actually diagnosed in what month we're in now October. So it would have been July. Alright, so you're part of the the little autism team then, are you? Yes. It's quite it's quite funny actually because the last guy that I had on a dude called Guy and he was sort of in the process of getting his child a diagnosis and stuff and he's realised the same thing. So there seems to be a little bit of a trend like Well, I'm also going through through my diagnosis. Once you're diagnosed, I live in in Cumbria, you get three follow up appointments after diagnosis to kind of help you to learn with social communication and things that you might struggle with. And they're giving me an autism passport. And I realise I'm actually a lot more autistic than I ever even thought because the things that come up in those sessions, I'm like, oh, yeah, because I just think everybody's like me. Yes. Yeah. And then it's like, yeah, no, you think completely different to them. And that that's not how people think. No, it's it's it's always well, I mean, if as per everybody, to some extent does that everybody thinks they're everyone's on the same wavelength and that it's sometimes hard to know what is normal and what isn't. Yeah. There is sort of a general sort of norms, but nobody really discusses what those are in general. So yeah. But that's very interesting. And I think, you know, due to autism being quite hereditary. And there's this large kind of genetic component to it. There was this guy that I, in me in university, I did like a final year project, I made a documentary. And there's this guy called Peter Bainbridge, who runs Southford autism. And he says that whenever he goes, he sort of mediates families with members of the public. So if a student who's on the spectrum has difficulty with the landlord, they will, he will sort of step in and try and mediate a little bit. That's good. And he has said on on on this documentary that every time he goes in to like a family household to if it's family dispute or or anything like that, there is always sort of aspects of autism in the parents of the autistic child. Yeah, I've noticed that just at groups and things as as the years have gone along and I've met different families and I would say that usually you can see which parent it comes from. And then I can see it in my own mother. And then I can see it in her father. You just follow the trail. Yeah, trail down. Yeah. Okay, cool. So let's get into the the grit of it. What is it that you offer at Chewygem? Like as an overview sort of? So Chewygem is chewable, jewellery, fidgets and steam toys, just to provide people with something safe that they can chew on because Chewygem is a steam. And it started off as a product. But now it's much more about the community. And that's where I focus most of my time. So it's just bringing people together because I don't know if you feel the same. But when you meet other autistic people, you kind of feel at home. Yes. Yeah, you feel like you can sort of be a bit more movie around and steam without feeling and feeling like people are judging you. Yeah. And you seem to get each other. And yeah, I just think that our community, it's really important to interact with the community. So that's mainly and we do have the product, you know, on the website, you know, you can go on the website, you can order the product. But basically, I'm in the community, I'm in the Chewygem sensory support group and on the main page, just chatting and helping people and meeting other autistic adults as well for me has been really amazing. In what way? Just that, because I thought everybody was like me, but at the same time I knew everybody wasn't like me, because I struggled in social social situations. And when I've met other autistic adults, I feel like I can be myself. So it's been really nice to meet other people, especially like things like the autism show in Birmingham, and we go down there and meet other people that are very similar to myself. I just feel kind of like I can just relax and take that mask off completely. And it's the same in the community. I do think that that is quite a big component of autistic communities, because I know that people in general are very understanding if you ask them, you know, I'm like, does stimming look weird or anything like that. But from my experiences, is that even if someone knows that you're autistic, but they don't really get it. I have sort of had a few like weird looks and all that. So I've sort of bounced between not stimming at all to doing too much of it, yeah, and feeling feeling sort of weird and isolated and people looking at me weird. Yeah. And I think as an adult as well, I find it easier to channel stimming into something that looks more socially acceptable. Yes, exactly. That's and that's the kind of thing that that I do right now nowadays. And I was quite surprised at how much I did that trial shift. I had to go with some of the items. I quite liked the the little bracelet sort of camouflage you black blade bracelet. Yeah. And I found that it quite it held quite a lot. Just a little bit, just a little bit just. Yeah, I find that like before I was diagnosed, I was a bit unsure of whether I should really explore things like texting toys and I did things in my own house because I was comfortable by myself. But now that I've got the diagnosis, I feel that I can explore my senses a lot more. So I'm doing things that I've always wanted to do, but I've always been a little bit too nervous to do. So like teddy bears and toys and things like going back to my youth. Yeah. And before I would have been really shy and embarrassed and I wouldn't want to be judged for doing that when now, I'll just go and buy if I see a teddy bear, I'll just buy it because I want it. Yeah, I just feel like I can do what I need to do. I do. I have kept a lot of my my sort of teddies and stuff from when I was younger. I really like I think one of the things that's a really big sort of stimming thing for me was a trampoline. Right. And I used to I used to sort of go into the backyard school and just bounce away all the stress from the days. Yeah. And it just seemed to help. I used to do this thing where do you know when you do like a backdrop on and trampoline? Yeah. And you sort of fall down and you bounce. Well, I managed to get it so I could just stay on my back and I'd sort of like kick my legs up. Wow. And just bounce on my back. Yeah. And that seems I'm thinking back to school because I didn't have a trampoline, but we did do trampoline at school and I'm thinking back to now and how much I really enjoyed that bounce. Yeah. Yeah. It just feels good. It's regulated, isn't it? It's really regulating. Very repetitive. Yeah. You know when you're going to bounce, you know, the the motion and stuff. Because I'm very hypersensitive and I've got quite bad vestibular hypersensitivity. So I'm really clumsy. Yeah. And it means means that I don't really get much of the sensory aspect of movement. But right. If it's like intense. So if it's a bounce or if it's like a roller coaster or spinning. So I used to spin in the in the living room when I was watching TV, which was very annoying for my parents, but I really liked it. And it it really calms me down. And I sort of wish that I didn't get rid of that because now I just feel silly doing that. And even even in private. Yeah. I don't know what you mean. See my eldest child is a pacer. So imagine the coffee table and Jamie's just pacing around in circles and circles and circles. Obviously it's really regulating for Jamie. But my husband gets really nervous about it. Because he can't understand why it's happening. Yeah. But I think there's something really wrong or yeah. And I don't want him to say, right, stop pacing. Why are you pacing? Because I want Jamie to continue to do whatever Jamie needs to do to be able to regulate. Yes. That's I think that's a really important aspect of it. And that's kind of kind of what you do at Tugem, isn't it? You give, I think even for would you say that you marketed mostly towards sort of parents or children? That be when we first started, I would say it was more parents of autistic children. But as we've grown, we've definitely got a lot more teens and autistic adults. So it's really for everybody. Recently we've had a lot of older women, which is really fantastic. Because I think there's this misgeneration of women that didn't get diagnosed because they masked their whole lives. And now they're diagnosed. When I was at the autism show, I actually did a sensory clinic. I had quite a lot of autistic females coming that had recently been diagnosed. And they just want to explore themselves. And it's as if they've missed out on the last 40 years. So yeah, we've got something for everybody. That's brilliant. And I definitely did find that the thing that I tried was very, very discreet. It looked like a normal band, but I could just chew it. Yeah, and we've got a mix. I've got a really Sorry, go on. We've got like some really fun and funky, like proper out there stuff. Because some people want to show it off, but then we've got some discreet stuff for those who don't want people to know. And I have tried my very hardest to bite through that bracelet. And I've got a really strong jaw and I just, I can't, can't make a dent in it. It's really good. So why did you, why did you start Chewygem? Why did the company sort of come off the ground? What was the ethos behind it? Well, it's based on Jamie who was my eldest child, going through diagnosis. Jamie was diagnosed with dyspraxia first. When we saw a speech language therapist, they mentioned about chewing. I just thought it was like an extension of teething originally. And I just kind of, you know, went with it, wet jumpers, holes in jumpers. And the speech language therapist said, you can buy something called Chulri. So I googled it and really there was only Canada and America that had anything. So I ordered some in. It was very expensive. I'm afraid I don't understand. Google's coming off. You don't need to understand Siri or Alexa. But, don't distract us. Yeah. So it wasn't quite what I wanted. So I started. And now I realise that this was one of my special interests. I then started searching and searching and searching because I knew there had to be something out there that was exactly what I wanted. It had to exist. So I was just on the internet constantly trying to find something. Then I found Gummi Gem, which was teething necklaces for mums to wear and babies to chew. And they just looked like normal jewelry. And I thought, you know, I'll give those a try. I ordered one and it was fantastic. So I then contacted the CEO of Gummi Gem, explained why I bought their product and how amazing it was for people with sensory difficulties. And then from there, Jenny, who was the owner, was like, well, would you like to work with us and we can set up a sister company? And that's what we did. Brilliant. So you saw a gap in the market. You pounced on it. It was very slow. It sounds quite aggressive me saying that, but you found some way of helping people. Yes, for me, it was like I'd hit the jackpot and I needed other people to know about it. Yes, definitely. Cool. And what really was the process of setting up Chewy Gem? Because you already had the Gummi Gem thing sort of already there. How did you change your marketing? What kind of things did you do to get it out of there? Well, for me, it was about social media networking. Obviously, we had Gummi Gems, so we already had the products at the time we were really small. So everything was getting sent out from Jenny's kitchen table. So they were doing all the picking and packing. So everything was there. We just needed the website and then to get social media going and networking and just get people aware of our products. So that's where I worked on social media and it was really slow going for a long time because people weren't using Facebook the same way as they do now. But yeah, it was just, for me, I just put a lot of time and effort into joining other groups and meeting other people that had the same needs as we did and just trying to get people to know that we were there. Just chatting with people. Yeah, a lot of it was chatting and going to if there was any events anywhere, just to sort of hand out my card and network. Cool. Right, I mean, one of the things that really sort of surprises a lot of people is when autistic people are very good and active in socialising because it sort of goes against the grain of what everybody thinks it's like. Yeah. Would you agree, like? Well, I was just saying this to my husband the other day. If I need to make a phone call, if somebody phones me, I ignore my phone or I don't make the phone call. But I've worked as a secretary. I've worked as a receptionist. I've worked in customer services. And if I'm that person, if I'm the customer services advisor, I can make that phone call and I can answer that phone no problem at all. But as me, it's really difficult. So it's kind of like you've got you've got two modes and once you switch on the other mode. Yeah, I suppose it's like acting. Yeah. It's like you're playing a role. Because it takes energy, doesn't it? Yeah, absolutely. Takes a lot of energy. So if you have to learn how to articulate them and what not to say, what to say, what are the hidden things that you miss in? There's a lot of ambiguity we're talking to, chiefly talking to neurotypical people I've found. Yeah. Autistic people, it's a lot more straightforward and easy. That's why I like our community so much because it is so much easier to speak to them. Yeah. And I have, you know, tried to you know, with my my YouTube channel, Last Birdish Growth, I've tried to get the name out there and talk to people as much as I can. And I think one of the main benefits for me, because when I started off, it was mostly as sort of a venting platform for me to explain, you know, the difficulties that I'm having at the start. But now as I've got older and as I've built up a little community on YouTube, it's really nice just to talk to people if it's just like one or two cents, one or two paragraphs exchanged in the comments. It gives you an idea of what life is like and what other people's experiences are sort of pushes you forward, doesn't that? Definitely. And I think it's really important for people like you that have got YouTube channels, autistic adults, because parents of autistic children have got somewhere to go to find out what it's like as an adult and where they might be able to help their children because you can voice it where their child can't voice it. Yeah. And there is a lot of difficulties being autistic in childhood, a lot of problems. And if you can't really like explain or put yourself in their shoes, it's very hard to work with them, I think. The main thing is that firstly, they'll know, they'll know what to do, they'll know what doesn't help, they'll know how to use their words, how to be direct. And secondly, they can realise there's some parents who don't particularly feel good about the future for their child if they haven't sort of been around autistic people a lot. And seeing people on the spectrum succeeding, I think, is one of the best things about social media and getting yourself out there. Yeah, definitely. Because they can think, hey, look, my son, my son's daughter is, has asperger, so has autism and look what these autistic and people, you know, yeah. See, Jamie. People on the spectrum have done. Jamie, my oldest child is going to be 16 on Wednesday. And they're quite involved in chewy gem with live videos and things, not so much at the moment because we're having some school issues. But what I like is that Jamie will go and do a live video and then parents will come on and say how similar their children are. And they're really thankful that they've seen this because now they know that as their child grows, they'll, they know that they'll be able to achieve certain things. And that is, that is very valuable. Yeah. Very valuable. I don't think there's, I think there's a lot of utility and sort of smashing, smashing the stigmas and overcoming sort of the, there's got to be a very fine balance between knowing what they, they can do when trying to sort of approach things in a sort of a graded exposure way rather than just sort of throwing them into it and not being yeah, I'm not putting that across very well. Sort of finding a fine line between, you know. Yeah. And I think it's really important to always consider mental health because my youngest child is a school refuser, really struggles with school. And whilst on paper, he should go to school and get GCSEs and A-levels and get a really good job, that doesn't mean that that's actually what he's going to achieve. And if I keep pushing him into that situation, it's just going to affect his mental health and he might end up getting no GCSEs, no A-levels where, so I'm at the point now where I'm thinking, well, what's better for him? Would he be better in a more specialist environment where maybe he got five GCSEs rather than 11 because it will be better for him in the long run for his mental health. Yeah. I think what one of the difficulties in sort of disseminating information about it is that every person is different, every autistic person is different and you know, while some autistic people can have high levels of anxiety, others can be pretty fine just going about what they're doing and not really caring about what other people think and that's that's okay for some people and it's always going to be tailored, doesn't it? And you really got to get inside the mind of your child or other autistic people to give them the best support. Yeah. And going on to the next question, what are sensory needs and is fulfilling them important for autistic individuals now that we're on the topic of support? Well, sensory processing difficulties that's when the brain has trouble receiving and responding to information that comes through the senses. Actually there's one in 20 people will suffer with sensory processing difficulties and there may not be autistic people. It is commonly associated that autistic people will have sensory processing difficulties but there's a lot of other people that will also have sensory processing difficulties that aren't autistic. So I think it's important that we fulfill everybody's need when it comes to sensory difficulties. I've got quite an opinion on things in schools and sensory toys and you know, some schools don't allow them and I just think that every child is so different so whether they're autistic or not if they need something to help regulate them in school I don't see why we're not doing that. No. And it's further just it's trying to mask what autism is from other people as well because kids are very understanding at that age if you explain it to them. Yeah. The other children, you know, around the autistic children all the people with sensory issues they'll say oh he can't have that because all the children in the class will want that but that's not the case like you say a lot of children are really understanding so if from the get go you go into the class and you say little Timmy needs a chewy gen and this is why then the children understand much the same as if somebody needs a wheelchair or glasses or a hearing aid if it just needs to explain it to them. Yeah. Yeah. And they are very receptive to that that's one thing that I found is that if you explain things to people just people in general yeah. In a way that they sort of resonate with to some degree you know with the right examples and comparisons it does work. Yeah. Not with everybody there's always going to be some people who are a bit you know skeptical and they don't really understand it. Yeah. But for most people and I think definitely something that I found. I think that's why it's important for autistic adults to be out there and doing things like this because we're creating a platform for people to access information so this is like this podcast for example would be great for teachers to listen to. Yes. And I think that's really important that we're doing things like this because it helps children and it helps other adults. What is the what are the benefits of fulfilling these sensory needs? Well it's self-regulation so people stim to regulate their sensory system I'll try and give an example I'll use school as an example so little kids at school have carpet time you know where you go and have your story at the end of the day so the teachers there and all the kids are sat on the carpet and they're listening to the story and then there's that kid that can't sit still bouncing around and then like sit down sit down but they don't give them anything to regulate themselves so the movement is their self-regulation that's their stimming so you can use a sensory toy it doesn't even have to be a sensory toy it can be anything anything that's going to channel their self-regulating so like blu-tac pipe clean is a brilliant something that just occupies them to self-regulate so that they can sit down and access that carpet time yeah and that's the same in any situation so I've used that as an example just because I know there are a lot of younger kids who struggle with things like that and it is as simple as giving them say if they're a chewer giving them a chewy gem some teachers will say the chewy gems are distracting I don't know if you've ever had this that people think you're not listening to them because you're not looking at them or you're doing something else oh yes but actually too often yeah actually too often like I could be on my phone I'm not necessarily on my phone like I'm not trying to someone I'm just doing something that it means that I can listen better and people might think I'm rude but actually I'm taking more in by doing that where a lot sis yeah you get you get told that you're rude because you've not looked at someone or you're rude because you're on your phone or you're rude because you're chewing or for me for my child Jamie rude for being on the iPad where actually if I'm talking to Jamie Jamie he is everything I say whilst on the iPad but if I said look at me listen to me they wouldn't have a clue what I've said because they can't focus they're trying to look at you yeah and it's difficult is that's it's something that I've that I've found in a lot of different situations if I feel compelled to look at someone in the eyes so if it's for like a job interview I know that I contact sometimes well it does help a lot with that kind of thing and the more that I try my best to look at somebody in the eyes the more that my brain just gets distracted from that task yeah and do you feel like you're staring at them because oh yeah I feel horrible for it yeah I feel like I'm trying to I feel like I'm being in a really bad person and then I'm yeah I try that's how I feel when people look at me like that yeah I've got these things so like back in school you know the teachers when they're like look at me look at me so in my head I think I must look at people so I stare at people and then I'm staring at them thinking I need to look away but I don't know how to look away now and it's just I just feel so uncomfortable so it's a lot of mind sort of your mind sort of tries to attack the problems like oh I need to do that and I need to do that and then you forget what they're saying you find yourself zoning out from it because you're just trying to concentrate yeah and that's happened to me even in like because I used to be a an athlete when I was younger used to be when I was a teenager and I did taekwondo and it's a combat sport so eye contact is usually sort of one of the main rules of you know aspiring with someone fighting with somebody yeah and I just can't concentrate if I'm trying to look at someone's eyes like so I there was something that my coach just told me to do and stuff but whenever I try it I just find myself concentrating more on trying to look at them than actually fighting yeah it's not very good especially if you're in such like a high pressure and dangerous scenario so did that affect you not being able to do the eye contact in taekwondo? so I when I went up to the ring when I was sort of walking out I would make eye contact at the start so I would you know just for the sounds a bit mean but just for the intimidation value yeah if that makes sense it sounds horrible but you kind of have to do that kind of thing yeah and then as soon as I fight I look I don't look anywhere I just look into the distance and for some reason that helped yeah because nobody knew what I was doing yeah because usually people look where they're gonna kick but I don't so that that was quite a I think that was sort of an advantage for me maybe that's what helped me in netball when I was younger maybe through yeah through where I wasn't looking yeah I think that's quite a good a nice little skill nice little hidden skill in the autistic mind so do you think there is any stigmas around sensory difficulties or fulfilling those sensory needs I don't know if I'd say there were stigmas I think again it's lack of understanding I think the world is getting better people are becoming more understanding but we've still got a long way to go I think like with the schools and I think it's important because schools that's where the young people are and these kids are gonna grow up to be autistic adults so if at school a school isn't willing to let a child stim or self-regulate and they're trying to stop it then that child's gonna learn to compress their sensory issues and and alleviate it in other ways which are probably not very healthy which I know that is a problem like alcohol abuse and substance abuse is quite something that I've read about a lot of a lot of kids at school are coming across that there's no issues and then they come home and they explode at home because that's where yes they feel that they can do that because at school they've tried so hard to compress everything and do as they're told and fit in that it's got to come out somewhere and that's that's something that I've my mom's a sensory sensory needs teacher a special needs teacher and when she talks to parents and stuff that seems to be quite a common occurrence and some parents they think that home is stressing them out when they come back from school that's what that's one of the that's completely like the wrong way to yeah and I think some schools will say well you must be doing something at home what's happening at home and it's not that it's just that that's the safe place that's where they feel that they can then let everything out because that's what I had and it does help yeah my youngest he he masks at school and the pediatrician that we saw for his diagnosis said I'm not sure if school are going to tell me the full story here because what they are seeing is just one side of him yes yeah and obviously being being a parent you have a bit more of a intimate relationship with your child it's just a given and so you'd be able to you'd be able to pick up on the the problems and sometimes people can be can listen to the teachers too much and especially when it's teachers who don't have an understanding of autism yeah um you're I cannot stress the importance to anyone listening but you need to find somewhere where there is someone who honestly understands it like who understands how autistic people work some of the the main problems and how to combat it and some of the sort of things that are quite misdirecting like as we've talked about um coming home and having a meltdown it seems like that that home would be the problem for most children yeah without having getting stressed at home but it's not it's just not being able to get rid of that nervous energy yeah and I've got this thing where say at secondary school you've got six lessons and I'm really struggling to get my son into school at the moment and it's maybe because something's happened in french for example so tomorrow he won't go because he's got french well I think why not let him not do french and it's not that I'm letting him get away with french it's just that at least then he's going to do five periods at school and then maybe he does that one period in inclusion just so that he's still in that school and he's still in the environment rather than being off for the whole day and then look at other ways of working back into the french lesson yeah that's what I'm trying with him at the minute yeah because how's that going um school have been quite good they've been quite helpful um yeah it's up and down if if I get him in is fine I think it's that initial anxiety of going to school once he's there he then tends to get into the swing of it but yeah I'm just trying to explain to school that if he misses out on one thing like PE for example it's not that he doesn't like PE but it's quite a stressful lesson for him because it's loud and there's a lot of people so I don't see why he always has to do PE because he'll miss that whole day because he knows it's a PE day if there was something else in place I've even said before I'll come to school and like take him for a walk for an hour so he's still getting physical exercise but yeah I just think it's important to focus on the the things that that a child's strong at doing what they enjoy and then work from there working around the problem yeah trying to grade it exposure yeah and this is what I was saying about the 11 GCSEs compared to the five and this is where I'm struggling now is that he only wants to do the lessons that he feels comfortable in so it makes it a real struggle for all the rest of the lessons and because it's a mainstream school and he doesn't get any support it's really difficult yeah do you have like do they have like a special needs unit or anything in the school no they do have a learning support department but he doesn't access that at the minute except my other child is in a autism specialist school which is fantastic yeah so the difference is it's like night and day but it's just that there's not enough places for everybody I have I have been into a special needs school recently they call it SCN don't they're SCN schools this one in Rochdale called Redwood Secondary School and I was just I was just amazed at how happy all of the children are well all the time I just think that all schools should have an ASD unit because all schools have got ASD kids so why not just have that little place where they can go if they need to we did have a local school and that's where Jamie was going to go originally and then they closed down the ASD unit and just said no it's mainstream school so in the end Jamie went where in Cumbria Jamie ended up going to Liverpool Residential for three years because that was the only school that could accommodate the need now we've got this new autism academy which has opened it's been open for three weeks locally and it's just absolutely amazing it's just do you find that his learning is enhanced by this environment? I don't know because being nearly 16 Jamie still doesn't want to go to school it's very much that teammate stuff yeah of course but it's just how bespoke the school is to each child and having spoken to some of the other parents it's like there's no pressure if they don't do any lessons the whole point is to get them into school between nine and three and them not be anxious and then they'll work from there so just think the whole the whole way that they're doing it is perfect that's brilliant and I've had this this conversation before but you know like the the the debate between mainstream and SEM schools I think that I think that SEM schools are very very useful for certain certain children I think some I think it's it's more about whether then an autistic child can handle mainstream school because there are some benefits to it in terms of meeting not so nice people meeting nice people learning how to interact with neurotypicals yeah and just becoming resilient and knowing how life works yes yeah but I I I don't know where that where that line crosses over to considering an SEM school because I had a horrible time in mainstream school due to bullying and isolation and not feeling like anybody really understood me we did have a special needs unit but it was it was more for kids who were a little bit behind yeah on school and they had to go in sort of do do some one-to-one sessions try and catch up with the the rest of the classes yeah and they didn't help me with what they said the only thing that I found very helpful was they informed all of my teachers that if I need a break if I'm getting overloaded I'm allowed to leave the lesson and just go chill in there and possibly have a meltdown in there yeah this is what I'm trying to fight for for Joe my youngest because not all of the teachers know because he only got his diagnosis in the summer holidays so I'm trying to tell the school can you like filter it down throughout all of his lessons so that the teachers know but I'll still at the point where they don't really know or some of them who might think that no he's not because he does just go into class and do as he's told yeah that there's there's quite a disconnect because some some people think that they understand autism the teachers some some teachers think that they've got it all figured out and stuff but it's only it's only when they have experience and an intimate experience with an autistic person that they really understand what it's about yeah and I think especially someone who talks about it yeah I think the whole special education school so I'm thinking back to when I was at school because I'm 37 so it's you know quite a while ago when I was in mainstream secondary I hated school I used to avoid going to school where where possible apart from the lessons that I really enjoyed where the teachers were really nurturing and helpful so history English German and can't think now but those three definitely the teachers were really understanding with me and really helpful so when I was struggling they would really help me and I did really well in my GCSEs for those subjects and I went to school for those subjects and I wonder if I got the same help and support in other subjects if I would have enjoyed them more and done better yeah because we learn in a very different way and we need sometimes we need teachers to come over and explain stuff in sort of excruciatingly intense detail yeah and for us to for us to get it in their heads processing time as well when a teacher stands up in front of a class and says and all the kids get that and start to work and you're sat there still trying to catch up on what they've just said yeah yeah and you need a bit of you need someone to listen to you that's like the main thing I just found that if someone is willing to listen to you and take on board what you're saying it helps like so much definitely some of the best best people that I've known in my life have no autism training or experience with autistic people at all and that the only the only way that they the way that the thing that makes me drawn to them it's just that they're kind yeah and they listen to me and they smile yeah and they try and help if we've got a problem rather than sit back judge you know so say you just been melodram over dramatic and silly yeah it's really important to have that aspect of it yeah and I think everybody in the world is different and that's why understanding people are really really good because you feel more comfortable with somebody that's understanding yes yeah you don't feel like you're trying to walk on eggshells or or glass probably as it feels like for us the intense anxiety of social interaction so yeah next question what can society do to accommodate sensory difficulties and the autistic people who have them right so I think people are trying really hard with autism friendly screenings and autism shopping hours and soft play sessions but they all seem to be on a Sunday morning between 9 a.m. and 10 a.m. and most autistic people really slowly sleep so being up and ready at 9 a.m. on a Sunday morning to do any of these things is really really difficult and then during these autism friendly hours I think they bring the music down and they bring the lights down and that's great but what if all of the time instead of so say your music level is on 9 and the lights are on level 9 but for the autistic friendly hours you bring them down to 3 why not always have them on 6 so that everybody can access things all of the time like why does music in a shop have to be so loud I'm pretty sure that even if you weren't autistic and you didn't have sense three issues that that music's still too loud definitely definitely it's not it's not the most relaxing environment is it for anybody and I personally do most of my shopping online yeah it's easier it's so much easier typing what you want sometimes you get the wrong items but it's convenient if you buy enough it doesn't cost anything depending on where you get it from so it's just like a no brainer I think things like the sunflower lanyard scheme are really good because and I've seen some Tescos have rolled it out as well now so if somebody's in there with the sunflower lanyard I would imagine say it was really busy at the tills they would maybe open another till so that they could get through quicker I think things like that because because you can't see if somebody's autistic that somebody doesn't look autistic you get that all the time like oh but you don't look autistic no you don't look autistic so there's sunflower lanyard for example brings it to the attention of the staff in the shop that you might just need a little bit of help I think that there's a lot of things that have been put in place to try and remedy it but I sort of feel like I don't feel like they are really getting to the core of the issue they're just trying to do some small things to get attention for themselves or to appease it in a little bit yes if that makes sense sometimes I think it is about publicity like if somebody puts an autism friendly hour on it's because they want everybody to know that they've done that but again it's not yeah they're helping autistic people and how do they police it like how do they know that it's only autistic people that are going and does it only have to be autistic people that are going it's just really it doesn't really make sense it's not it's not thought through properly I don't think where I think if and the 9 a.m to 10 a.m thing is absolutely absurd I don't know how I don't know about you but I would really struggle to do that a lot see I know that my local 24 hour test scores is really quiet at like 9 or 10 at night so I would just if I was gonna go I'd probably go at that time anyway like I would never go places that I know are gonna be busy at certain times I do but I just struggle with it yeah see I live in a really small I put myself through it I live in a really small rural place so there's never really any danger of going somewhere busy well so yeah we're bouncing in Cumbria except I'm terrible at geography it's not my favorite subjects I live in a little market town called Egremont which is near Whitehaven and Workington and then probably about an hour and a bit from Carlyle which is our nearest city but where I am it's just yeah just a little place with fields and not many shops just like your local post office and things like that so yeah it's it's not a busy place it's quite nice kind of like Harrogate I've never been to Harrogate actually would you say I mean no no oh well and I nearly ended up working in Harrogate but I've never actually been houses are difficult but yeah it is a really is really lovely place so I only really realized that until I went and went to uni in Manchester for four years well three years then I then I appreciate the fields and the quiet and the it's just a lack of people everywhere and the buses it's so much more of a calming environment just have all those sentry things yeah like where I live it's turned down a little bit if you got on a bus here you wouldn't have to worry about standing they're never that busy yeah I hate standing up it's like where do you look that's one of the most difficult sort of social situations for me it's just what you're supposed to do because there's no set rules for this it's not like it's a social interaction with your friend because you know that you're going to be talking about your day and what house things have been going but it's just the subtle things that I struggle with for different situations yeah me too and because of what yeah and because of where I live it's like I know who's going to be behind the counter in the shop for example because it's such a small community so I've got to know what they will ask me or what I should ask them yeah yeah so I've got these little scripts and I know I walk the dog at a certain time I know exactly which people are going to pass me what their dogs are called so it's like all in my head ready to go if they speak to me yeah I like that I do I don't think anybody's never sort of I thought that was just something I did but no well I do that and when I was going through my assessment for the psychology said well that's like routine that's your routine and I was like yeah didn't think about it like that but yeah it's like if I'm at the bus stop I kind of know what I'm going to say because it's usually like an old man or an old woman who's waiting for the bus so it's usually like how's the weather you know that sort of conversation I've got them all in my brain I know who says what and how to answer that's cool it's it's usually for me it's usually about if I'm going somewhere that there is a possibility that someone confronts me you know not so nice manner that's usually where I get all my scripts from it never happens I was gonna say I couldn't imagine being confronted in a not nice manner but I suppose where I live it's very unlikely to happen where I hear about things in like bigger cities yeah so you're in Manchester now no I'm back in Harrogate I finished my uni degree I went did three years at Manchester and one year in Thailand in Chiang Mai so there were very sort of busy places and very different places but yeah for for a lot of my time in Manchester I've always had I've always sort of gone over in my head what I would do like and it never happens like this has only been one case where someone has approached me now possibly going back on the tram after going to training yeah and nothing happens but I've always prepared these scripts just in case but that's really interesting so we've gone over questions have gone off there we go gotten back so what are the three most important lessons you've learnt at Chewygem that the customers are the most important people because without the customers I won't be able to do what I'm doing now I absolutely love my job I think it's very rare that somebody can say they love their job so yeah so without our customers I won't be here doing what I'm doing I've had to learn to try not to take things personally because I'm a people pleaser so as a business you can't please everybody there's always going to be somebody that's disappointed with something and for a long time I would take that personally so it took me a long time to learn that lesson that people aren't personally attacking you if they're not happy yeah and just to believe in yourself because things get tough and I think especially when you're autistic you go into like the dark mode I call it and it feels so hard to climb back up to the light you just feel so dark at times and so I try and be positive and remind myself that I'm doing this for a reason and that if it's a bad time it's going to get better it always gets better it's your meaning your meaning your meaning to life that sort of pulls you through the difficulties which is so yeah definitely well that there's just some great great lessons I'm very very pleased with those and I do think that yeah I'm a people pleaser as well and I think you know throughout life and trying to make it in the media and media and stuff and talk about autism I have learned that you know some people are just going to have off days and some people are just going to be a bit rude and not acting the same the way that you'd want to yeah and I think that's that's the important thing sometimes I'll get a message from somebody and they're really irate because maybe their parcel hasn't turned up on time or it's turned up and it's missing something and I think to myself what happens if I was having a really bad day and that was me I was possibly reacting that way whereas I was having a good day I might message and say oh I've got my parcel but such and such is missing but another day I'll be like right I expect a refund and people do just have off days so you've got to respect that when somebody gets in touch so take a step back yeah view the reasons why they're like this rather than yeah and especially in our community because if it's a parent that's got an autistic child they maybe haven't slept for weeks you know so it can be hard can be hard very difficult and I'm going to go on to the last one so this is sort of a a little question just exercise the brain muscles you can answer in any way you want so it doesn't there's no set in stone answer it doesn't it's not requiring anything but what does autism mean to you this is always a really difficult question isn't it it is because it's so ambiguous but it's sometimes you need it just to get there get the cool answers that you don't expect so for me it's probably about seeing and experiencing the world differently because I didn't realize that I did that until I started going through my diagnosis yeah like I've said before I just assumed everybody saw things the same way as me so to now realize that I'm seeing things differently and that's quite cool gives you gives you a perspective doesn't it because you can realize that the stuff that you struggle with it's not because you're like weak willed or or anything like that it's because you experience life and then at an intensity that other people don't and I think it's important to remember that there's things that you struggle with but there's also things that you're really really good at and because you're coming from a different angle to other people that makes you a really important person I think and we have a lot to offer definitely everybody in life a lot of unique ways of thinking about things a lot of skills hyper concentration a desire to learn every single nook and cranny of everything to do of our subject of interest and there's just so many people out there who are famous and have done great things that have aspects of autism and they you know whether it's explicitly known or whether yeah I think it's certain traits you were on our podcast Jenny asked you about who inspires you and I think you'd said Anne Hagerty was one of those yes and I was thinking that like you won't know this but there'll be loads of people that are inspired by you who watch your YouTube channel and I think that's awesome awww I don't yeah but I don't it's really hard to sort of get that into my head because it's when you get on YouTube and social media and stuff a lot of it is to do with you're just looking at numbers usually and it can be it can be very difficult because the more numbers that you get the more little each increment each step feels yeah so I used to if that makes sense I used to focus so much on numbers page likes and if somebody disliked the page and things like that and then because obviously we're growing and we're growing so we send out newsletters and things and somebody might unsubscribe from a newsletter and how many emails do you send per week and then I thought you know what if somebody wants the information then they're the people like you want to be following you and if you're helping them then they'll stay with you and the people that leave I mean I think it's a bit different on YouTube do you get much negativity on YouTube I it's it's hard to say whether it's negativity sometimes I'll get like maybe a very low amount because it's because my channel is so small and the people who do follow me are very sort of you know behind me I don't get that much negativity and sometimes a lot of the issues come from people making snap judgments about me and about what I do I had this one guy who was who came on and said oh you're perpetuating all these people coming up and saying that they're autistic and stuff and then little did he know there was a video on the bat burner ready to go out on the day after about the benefits of getting a diagnosis yeah I think like I've heard quite a lot about people being trolled on YouTube in particular yeah because like at Chewy Gem it's a really positive community there's very rarely anything negative that's said and if it is said it's usually have a look at it from the perspective of have they had a bad day what's going on here and then we'll sort it out but yeah I think that's my from what I've heard about YouTube I've never I do put some videos on YouTube but I would never really go on that platform because I'd be worried about negativity yeah oh one thing that I have found is that the the autistic people who do post quite negative and harsh things they are extremely you know sort of they've got a silver tongue for that sentence and that they craft these words of yeah or that they elaborate on it and explain each part of it but as soon as you reply and you give them reasons for it and you you're nice with them then then they're very sensitive to it and there's been there's been sometimes where that someone has written a very long and drawn out and fought out comment about something and then I've replied in a really nice way and they've been like oh you know what yeah you're kind of right I'm gonna subscribe to you and I think that's the key isn't it to be nice all because I'm the sort of person that if you've got nothing nice to say don't say anything at all yeah so yeah yeah well at least something constructive at least and those are the things that you know that I've picked up and I think that's one of the the golden sort of things about autistic people is that if you make sense and you come across in a nice way and you're not condescending then they'll be very receptive to it and neurotypical people from my experience don't seem to have the same same sort of thing not everybody of course because I'm not everybody is different everybody but in general that's that's the kind of thing that I've found so I think yeah we've just passed an hour so I think we'll round that up Lorraine thank you so much for coming on the 4080 podcast have you enjoyed yourself it's been a pleasure thank you it's been really great to talk to you and let's let's get out some social media links so do you have any anything that you want people to follow or have a look at or do yeah so we're on Facebook we're on Instagram and Twitter chewiegem.co.uk is the website but our sensory support group on Facebook is the place where we want people to go that's where we chat amongst ourselves and that's the community that we're trying to push so it's not about the products if you need the products that's fine but if you just want to come and join the chewiegem sensory support group then it's a brilliant place just to me other life-minded people and of course your podcast sensory matters yeah podcast sensory matters it goes out every Monday you can find it on the page on Spotify, Stitcher and on iTunes but we post links on Instagram and Twitter and everything as well everything's on our website our website's fantastic because we've got a content hub so you can search through there for blogs podcasts downloadables so that's all on chewiegem.co.uk and if you do have any questions you are at the public rave you guys, you guys listening if you've got any questions for Lorraine am i right thinking that you'd be very happy to receive some direct messages on Instagram or Twitter yeah direct messages on any of our socials and i'll be happy to respond brilliant and if you want to go go and check out some of the stuff that I do I livestream on Twitter I post regular things to my Instagram and Facebook the role at Asperger's Grove if you want to go check those out and of course YouTube Asperger's Grove go check out some of my videos on autism mental health know whether you've got problems you're autistic yourself you've got problems making friends dating mental health I cover all of that stuff and there's also a few videos that you can share with your friends or your community that help people really understand what it's about if you have any ideas of what you want or who you want on the 40 or two podcast maybe you want to be on yourself you have some amazing story to do with autism and mental health please contact me that's my email Asperger's Grove at gmail.com let me just check that again sometimes I'm a bit muddle-minded come on Tom yeah Asperger's Grove at gmail.com thank you anyway I hope you all have a happy integrated day hope you're feeling bright and sunny and doing good I'll see you on the next 40 or two podcast and Lorraine again thank you so much for coming on I'm so happy to meet you see you later guys