 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 headfirst into the world of autism and mental health. With all those tantalising tongue twisters out of the way, let's get into the show. Hello and welcome to the first Forty Autie podcast. Today I'm joined by Guy Shahar, the author of Transforming Autism, How One Boy's Life Was Renewed and the creator of the Transforming Autism project. Guy, say hello. Hello Thomas. So just to give everyone a little bit of background, Guy went through a bit of a journey when his son Daniel was diagnosed on the autism spectrum. In the book he talks about the development of Daniel's autistic traits, the difficulties in finding effective mainstream treatment and the transformation that occurred in Daniel after their decision to go to the Mithni Centre in Israel. So do you want to give a little bit of an intro into what the book is about and what the Mithni Centre is about just to give a bit more of an in-depth? Yeah, so the book is basically about my son Daniel's life up to the age of about six, which is when at the age of one we started to notice that there were some things about him that were changing and that worried us quite a lot because it looked like he was having a much less happy life and he was much less connected. So it's about the process that we went through to find out what was going on and try to get help for him and that included going to this centre that you mentioned called the Mithni Centre in Israel, which is a specialist centre for very, very young autistic children. It now only treats children up to the age of two. Daniel was slightly older than two when we went at that time, but yeah, that's what it is and it treats children in a very different way from a lot of the other treatments that are available out there in that it's not about trying to mould the child according to expectations that we have of them and of how they should be, but it's about developing a relationship with the child and providing a safe environment around them so that they can bring out the best in themselves. Brilliant. So that leads us on nicely into the first question, which was what were the early signs of autism that first appeared in Daniel? What were the main things that you guys picked up on and I thought maybe that's a little bit odd, a little bit strange, a little bit unique. The first sign of all was just that he started to chew his food and then let it fall out of his mouth so he was swallowing less and less of it. That was the very first thing that was just after he turned one and we just thought well that's a bit strange we didn't know anything about it you know and eventually it progressed so that he wasn't able to eat solid food at all by himself anymore and he went back to having we had to puree everything and feed it to him in front of cartoons. But that was the very first thing after that you know slowly slowly he started to withdraw and disconnect from us over a period of months or so that you know he became less responsive to our attempts to communicate with him to the point where at one stage he didn't seem to register his name and didn't seem to want to hear his name in that he might sort of almost do a pushing away gesture and a groan when when his name was mentioned. But the most difficult thing for all of us was that he became really really frustrated really easily and he had huge meltdowns that went on for hours sometimes and totally drained him. He sort of cried himself to sleep I mean it was more than crying it was like sort of screaming and shaking and just being totally unconsolable and then he'd wake up totally exhausted sometimes it would just resume there and then and you know so he was totally depleting himself and his energy and everything and we had no idea what we could do to help him. So it sort of went from that just starting to spit out his food to that whole meltdown thing within about six months or so. Very soon and I think one of the problems with the UK medical system in terms of autism is that they don't provide very early treatment it's very much sort of a late late stage thing. Yeah I mean it's a common experience we went there we were told wait and see come back in a couple of years if you're still concerned about something and we were thinking yeah but we have this issue now he's really struggling now what is waiting a couple of years going to achieve. Indeed and obviously from what you've described it's it seems to be quite seem to be quite a glaring issue and you did say that you didn't have any prior knowledge of autism you and your your wife at the time so obviously there's got you you need to find some way to help your son out. Yeah absolutely I mean we had I actually had more knowledge than I thought at the time because last year it was confirmed that I'm autistic myself which I didn't know about so I didn't have the the knowledge in the sense that it wasn't forefront in my mind but I have the experience and you know a lot of things that have subsequently happened in Daniel's life have mirrored a lot of the things that happened in my life and in my childhood as well. Oh well welcome to the team to the little autism community that's that's quite a big thing a very big thing but I suppose that having that experience yourself is going to be very beneficial to you know bringing up Daniel because you'll obviously have a bit more of an understanding about all the difficulties that it'll be experiencing in life. I think it does and I think it does on the level of almost being able to tune into him more easily and have a sense of what he needs at any moment to feel better. In the book you go into a lot of detail about how difficult the experience of getting support was. You've touched on a little bit about how it was you know hard to get lower age sort of diagnosis and treatment but what was your experience you know going about and talking to doctors and trying to get treatment? Not good to be honest and I don't know I think part of the issue is that autism is defined in medical terms by what they see as symptoms that indicate autism so things like you know communication issues and things like this they would define it by and it doesn't seem to offer any route to understanding what it's about to understanding the experience of the child that's going through what they're going through and it doesn't seem to give therefore any clear path to helping those children and so even when you know there are some parents who find that the health system in their area or the particular people they interact with it is more responsive but what's it more responsive in doing it's more responsive in diagnosing and that's it there isn't the real support and the real intervention to help the child even with the smaller pieces like the anxiety and things like this. So yeah I mean the book has a chapter of horror stories if people are interested in that sort of thing about trying to get some sort of meaningful help from a medical system but at the end of the day in our case it ended up as quite a good thing that we didn't because that forced us to take responsibility ourselves for helping him and finding a way that could make him feel better and happier. Yeah I definitely I completely get the difficulty with the the medical system my mom used to be a like special needs coordinator and she's dealt with you know a lot of kids and stuff she goes on like to go to different schools does outreach and talks to the teachers and gives parents training and she is just astounded at just the firstly the lack of support in general medical systems so although not everybody is an autism specialist there is a very low understanding of how to how to go about that stuff and I think one of the problems that you had was in those those settings when they're trying to get the diagnosis or they're trying to do some kind of treatment they're very they were very sort of not understanding of what it was like for Daniel. Yes. Would you agree? Yes I also I mean I don't think there's I don't think they have a lot of expectations of what they're able to do as well you know there's a they see autism as a condition that involves these symptoms they call them and once these symptoms are manifest they're there for life there's nothing you can do you can trim around the edges and things like this and so there isn't there isn't any real attempt because they don't think it's possible to really help the child become themselves become who they are become happier with who they are and how they are with themselves do you see what I mean? Yeah definitely and I just I am astounded myself at just how how little autism awareness general autism awareness and specialism there is even even for adults you know young adults there is a large gap you know considering like the mental health issues in autistics you know one in one in free having severe mental health conditions not a lot of you know like mental health professionals have autism training and it just seems to be something that's not ignored I'm not saying that people do it out of spite but they just seems to be a very low lack of support for that and with that there is a lot of you know different stuff and people who aren't you know generally sort of practice they're not they they haven't gone through like medical school they they have different sort of treatments I'm trying to mess my ways up there what I'm trying to say is what were the sort of alternative treatments that you've explored what what helped what didn't you know the kind of stuff that wasn't a part of the the general medical system yeah so you know the first thing we did was we just looked around to see what else there was and we tried all sorts of things there's one thing we tried called radionics which is an unusual thing where you connect with somebody remotely by Skype or something and they do something like energy work on the child and and you know it wasn't really that clear what was happening but it was interesting that after each session there was some sort of change in him for a while in that you know he might wake up after one of those sessions and and just feel a little bit brighter a little bit happier or something so don't know how it worked but there was some there was something there we tried homeopathy it didn't seem to have any effect whatsoever in our case other families have found otherwise but for us it didn't seem to work at all I think the thing that probably had the most effect of all the things that we tried in those very early days was cranial osteopathy which is you know it's a particular type of osteopathy where the the specialist puts their hands on the body in certain places and in certain ways and he seemed to respond to that more than to more than to any of the other things but none of the things that we tried in the early days were things that were going to make a profound difference to his experience of life and his quality of life which is why we kept looking it's more of more of kind of a short-term thing rather than a long-term a long-term thing which is what you needed yes and what you weren't getting yeah I completely get that I think you touched on a little bit about how it was good for you know sleeping his anxiety but not much to do with general well-being yeah I mean anxiety yes it would have been you know if it had been a profound cure for anxiety that would have probably have solved everything but actually it did seem to soothe anxiety for a while and then a few hours or days or whatever later it would be back as it was before who knows it might have had a long-term effect if we carried on plowing ahead with that it might have it might work you can never tell but our experience of it wasn't you know it was good and we still go for cranial osteopathy sometimes because it's sometimes helpful in a tight spot but yeah not as a not as a sole approach to improving quality of life I wouldn't have thought and when you were when you were looking for these alternative treatments you were definitely looking for something a lot more long-term something that really stood out to you when yeah why why did you go ahead and choose the miphany centre over all the other organisations be it good or ethically bad I think precisely for that reason because we wanted something that would really address the reasons why he was feeling unhappy and why he was feeling the need to withdraw and you know it was a bit of a leap in the dark because we didn't know that much about it a lot of the reason we went was because my wife and I both had an intuitive feeling that it was the right thing to do you know there wasn't a lot of information on their website we connected with another family that went and found out a bit about how they work but we didn't know that much and it was a very big leap in the dark because it was so expensive and you know we had to beg borrow and not necessarily steal but do everything we could to get money together you know so we knew that if it didn't work out then we wouldn't have the means to try anything else so it was a it was a really big step but it was one that without really knowing why we felt very sure about and we were we were actually quite pleased in the end that it's what we did but it wasn't at all certain that it was going to work out before we went and there were you know friends and family going what are you doing why are you putting so much money into this you don't know anything about it it could just be some some you know just another snake oil salesman like so many other things that are out there yeah and it's so far away isn't it yeah yeah israel yeah it's not just israel it's sort of you you have to get to fly to israel and then it's you know it's uh can't remember three or four hours by car to get to the place and it's a village on the other side of the country and definitely Daniel obviously probably didn't like all of that then I can imagine no actually we we we um we thought we'd make a bit of a holiday of it and we had a few days of Tel Aviv we went to a hotel in Tel Aviv and it was you know it was terrible because you know he was in a different place um he wasn't happy with you know the temperature there it was like you know very much hotter than england which isn't difficult at all he he just became very unsettled and very unhappy there so it wasn't much of a holiday yeah he wasn't happy with that that part of it at all so what what difficulties did you have with the the whole miphany approach initially now what what did you sort of second guess a little bit what was what was the main sort of problems that got in the way of getting the most out of the treatment i i'm not sure there were any because we'd sort of decided we were going to really give it a full go um and also you know we'd put our eggs in one basket so we had to give it a full go so we were very trustful of whatever they told us would be the best thing to do there was nothing they said that didn't feel right probably the thing that was hardest was that on one of the very early days we needed to both of us go out of the room and leave him with the with one of the therapists so without a parent and it would have been his probably his first time in his life without a parent and that seemed like a really big step to take and we really weren't sure of it so that was probably that the one thing where we thought hang on i'm not sure i want to go ahead with this but we did we did go ahead in the end and he did find it very difficult but it turned out that that was an important part of of the process and just even before getting to the miphany centre you said you touched on a little bit about about get actually walking on that long flight of stairs or that long hill yeah what was that like because that they they sort of gave you some guidance on how to so you mean the west so they they put us up in a house which was about a 10 minute walk away from the centre and every day we needed to walk um to the centre and that was part of the part of the treatment walking at that hill is this what you mean Thomas yeah yeah yeah sorry so he'd been he'd been very much used to going everywhere in his push chair he didn't really like to walk he'd like to be carried and things like this but they told us you know it's going to be really helpful for him to to to sort of work towards slowly towards independence work slowly towards being trustful that he can do things that he doesn't believe he can do for him to walk there so we needed to encourage him to walk we used to walk with him up the hill every morning and he you know there are a lot of stops and a lot of tears on the first couple of mornings um he didn't like it at all and again that was another time I guess when we were thinking are we doing the right thing here are we pushing him in a way that that isn't right that isn't respectful of him but by the end of the time there you know actually probably by the end of the first week he was sort of you know proudly marching up the hill by himself his whole thing had given him this sense of confidence and happiness and so that reassured us as well that that we were doing the right thing so the miphany centre has a few sort of maintenance containment offering interaction you know reassuring space and acknowledgement could you just give us a brief overview of what those mean maybe give some examples of how they enacted those tenants well I think that the main one was containment and I think that that probably encompasses all of the other things that you mentioned and content my understanding of containment and it's a really really important concept and it's one that we we use a lot and we talk about a lot in the charity as well and you know that we've got articles about containment and it sort of runs through not only how we want to be helping autistic children but how we want to work as a team together as well and be containing at each other in its simplest form it's the idea that everything's okay that whatever happens everything's okay whatever happens I can cope with it whatever happens things will be all right I think that message that conviction is something that every human being could would you know is the most valuable thing for anybody it's the one thing that can reduce anybody's anxiety and the question is how do we use that with children how do we give children that sense that everything's okay and what we learned was you can't do it by explaining anything you can't do it by you know telling or showing the child what they should be doing or how they should be thinking or feeling you can only do it by embodying it yourself because the child will tune into that you know every child looks to their parent as a sort of barometer of how safe the world is how safe things are around them and if they find that their parent is stressed the message they take from that is wow there's something to be stressed about here this is a serious situation there's a crisis going on and if they look at their parent who's stressed who's calm who really understands that who really feels and believes that everything's okay and there's nothing to worry about and that things are going to turn out okay children can easily tune into that from their parents and children will therefore understand and take the natural lesson and trust that that's how things are and it works on such simple levels like you know some time ago I was just walking nearby with my son and he felt down and scratched his knee and he started screaming like it was the end of the world and I just laughed warmly with him and it sort of calmed him down almost instantly because he was like oh well actually there's no problem here whereas if I go oh my god Daniel you've cut your knee what are you going to do about it then he would that with his sense of terror that something unmanageable it happened would only be reinforced and he would go more he probably would probably lead him to a meltdown so yeah it's it's really about embodying in ourselves that everything's okay and giving that as a cue to the children and they pick up on it and there are you know it comes up in so many um aspects of life um but some of the other things you mentioned well as well um you said about um offering interaction so this was about for example if if he seemed like he just wasn't interested in interacting in any way um instead of pressuring him instead of having an expectation I need you to interact with me or I have an agenda that you should interact with me which will not make him feel comfortable and it will only increase his resistance as he does for anybody instead we would not pressure him at all we would offer um an offer in a very gentle way and offer with the understanding that the decision is whether he interacts or not is with him and it's fine either way our job isn't to force him to interact but it's to make that available to him and make it interesting for him if he wants to so we might do something like sit in the corner of the room with one of his favorite books and start reading it out loud to ourselves you know and maybe look up at him occasionally as a way of saying you can join me if you want but it's fine if you don't want to and most of the time if we did something like that he would sort of keep he would tentatively peak up and then within about you know within less than a couple of minutes he'd be sort of right there sitting by sitting by our side or sitting in our lap following the book listening to the story it's just about doing things in in really light and simple and non-pressured ways instead of using a sledgehammer to invite children to do things and that that is massive that is very from what I've seen with a lot of the different overall autism organizations it's very different in the sense that you do have that offering and containment and reinsurance rather than do this or you get punished or do this or you get it's very it seems to be very ethical in comparison to a lot of the the other sort of treatments that I've looked at well I think so I think so and it's you know we're really passionate about that actually and it's like we've got a number of therapists on our team volunteer therapists and they're really great but we'll only take therapists who really subscribe to this this what's known as a more developmental way of helping children as opposed to what's what's known as a behavioral way which is about trying to get a child to fit into it to an image that we have of how they should be control and mold them into something that the parents will find easier or find better yeah because as well as being counterproductive that's also I think you said really disrespectful it can be sometimes be quite cruel as well it can be really cruel and a lot of people a lot of autistic people who've been through that sort of behavioral therapy really feel when they get to adulthood that it that it's that it's violated them in some way that it's it's not respected them as individuals and and try to force a way of behavior on them which doesn't match with their natural way of being it doesn't teach them skills to be independent and do their own thing and grow it's just a set set number of things that they have to do and if they do that then yeah I can imagine and I was very surprised about you know reading about it in the book yeah how long how long did you go to the mithni centre for gonna ask three weeks three weeks so although that is quite that's a good amount of time yeah what what I didn't say about the centre is that you know it's three weeks but it's very very intensive because the whole centre treats one family at a time only so you know they sort of five or six therapists I think we're working with Daniel and it was just him it was just and it wasn't only working with Daniel it was working with us as a family because they see it very much as a as a whole family a fair rather than just an issue with the child which it isn't well that's great that is I can't imagine how beneficial that would be I mean I can imagine a little bit because I read it but how did you incorporate those those teachings those aspects of the mithni centre into your daily life in the beginning it was it was in a very structured way because you know whereas what the ways had worked in the centre in Israel is that he'd he'd been in a room for six seven eight hours a day with with a therapist one to one and with you know they they changed the therapist every hour or so we needed to replicate that as much as we could when we got home so it was it was a very very exhausting thing to have to do but you know I did maybe an hour before work and an hour after work and my wife did some hours during the day and we had a therapist who came in a couple of times a week or maybe a bit more at the beginning to fill in some of the gaps as well so it was it was really really intense at the beginning but as time went on as he started to go to nursery we reduced the hours a little bit as he started to as he started to come out of himself a lot more we gradually expanded the whole thing so it wasn't just him in the room you know it was happening all over the house and so it was less structured the whole idea is that you have that very controlled in the sense of it being fixed in one room you have that very specific situation for a time but the purpose of it is so that the child feels safe to come out of that and and expand their their horizons I guess in terms of in terms of the the types of environment where they're able to feel good expand the bubble out yeah exactly so yeah so it sort of spread to the house by the time he was five we weren't doing anything in the room anymore but after that long of putting the the treatment into practice by ourselves it had sort of been incorporated into us were there any other sort of resources that you you um drawed upon after the miphany centre I know you talked a little bit about the davis method could you could you give us an idea of what that was yeah the davis method it's another I mean it's another one that we really like in that it's about helping autistic actually it works more with autistic adults in fact but it but they do work on children from around the age of five or six how I don't know how would they the language that they would use to put it I think would be to interiorize concepts things it might be it might be things as simple or as profound as concepts of the self and the other there are many people who don't perceive I mean and an intellectual level yes but don't have that sort of inner understanding of the boundaries between different individuals and that starts to do in mind blindness isn't it like I think there's a concept that that's quite you know known about in the diagnosis and on psychological understanding of it and is that is very hard for autistic children and sometimes autistic adults to empathize and not empathize but put themselves in someone else's shoes and view the world from their angle yeah I think so I mean that's that's Simon Baron Cohen's concept isn't it the mind blindness one and I to be honest I don't know enough about it to be able to say whether it's the same as the one suggested by the the Davis method but it does sound like it's very similar and the way that the the Davis Ron Davis actually who's the that he founded the Davis method he's um he's autistic himself he suggests that this this non-distinction between the self and the other comes from this it's a really spiritual thing actually a sense of interconnectedness of all things and all beings that he has experienced himself very profoundly but it's a it's a it's a way of without losing that sense of interconnectedness to be able to distinguish between the self and the other in daily life um but that's just a starting point it goes through a whole load of other things about time and sequence and they've got a whole load of other things we had a really really good therapist we were working with but she was in Germany and the distance piece of it didn't work that well and and so and also Daniel was one of the youngest people who'd ever been been through that so I think it was it didn't work so well for him on that concept level but I can certainly see the potential on it if we if we found somebody who was really really good at working working through it with him here but what they also have the um with the davis method it's a it's a little they've invented a little machine called a night oh yes yeah I remember I remember you saying something about that in the book it's very it was very interesting yeah there's some huge acronym for it which I'm afraid I don't know but it's um it's a really it's a really um uh interesting thing it's a it's a little device that is placed between his shoulders and it emits a sound to each of his ears at the same time and this sound has an orientation quality to it so it's all it is it's just a sound going on every few seconds and what we found when we when he started to wear that was that it did sort of um give him that sort of sense of orientation because one of one of his issues was that he was really really disoriented you know he'd go out he wouldn't really know where he was he'd be looking around he'd be sort of confused and lost quite often sounds like me well I mean it sounds like me too but I think it's um you know it's quite common in autism for that to be the cases yeah or for the fairies yeah and it sort of did work to sort of to sort of orient him at those times when he needed to be oriented so that was a really useful thing we did things like music therapy which again you know uh I really like music therapy and I couldn't I couldn't do justice to it if I tried to articulate sort of how it works but when you talk to the music therapists you know I'm always sort of awed by sort of their depth of understanding of how to to connect with the child and you see them working with the child and see them using music to to you know really just reach them and make a connection with them and get them to get them to feel good about themselves and wanting to share something and wanting to participate in in a joint venture it's a really nice thing I really like music therapy horse riding we did you know he learned horse riding a little bit which he really liked he really connected with the horses and that's quite a grounding thing and he goes to a little children's gym where he sort of does you know exercises for his balance and they're sort of really good as well and they're sort of quite grounding and orienting as well so there's some of the things that we've been trying since history but obviously our main focus has been on the on the the principles of the mythnotherapy and you know expanding that as he gets older or adapting it but these are these are additional things that have been really helpful as well that's brilliant so the music therapy did that help with the did that help a lot with the anxiety or was that more of a did that help more of the connection and sort of sharing experiences part of development I think and with all with all of these things that I've just mentioned it's difficult to say with any of them this is for x or this is for y it's again it's an intuitive thing it's just a real you know watching him take part in them it's a real sense that he that they're doing him good basically because you see how he's interacting how he's relating with them and yes okay it doesn't necessarily make any noticeable difference in daily life but it's an experience that's a very connecting and positive experience for him and one that you know you make adjustment can only do him good well I've never I've heard a little bit about music therapy but I've never heard of that no it's a no it for anybody who's interested does it work with adults or is it just for just for children so what it was actually designed for was the non-verbal autistic people adults and children and it promotes the orientation that enables speech to develop so people often people use it most often to to promote speech hmm I'll have to have to give it a bit more look after the uh have to speak very interesting did you have a few schools in mind when you were because obviously the whole choosing schools is a very you know a difficult process for anybody but when you when you have a child who you know has special needs they have different needs it's obviously quite hard to find somewhere that you'll feel comfortable with and obviously with the distance as well so how did you get around that how did you find somewhere that was good for Daniel well we live in an area where the schools aren't necessarily the ones that parents would most desire I guess and yeah so first of all I guess you've got the you've got the question do you go for a mainstream school or an autism school and you know there's you that's a huge decision to make in itself and we we decided at that time that we wanted to try him in a mainstream school because he he did you know through the treatment that we were doing with him he seemed to be going from strength to strength it was a big step for him and a big challenge for him but it seemed like it was something that would he would adapt to and and he would enjoy and there was a new school opening in our area which is one of these these three schools that had a you know very different ethos and we sort of really liked the the thinking behind it so we enrolled him in that school and he did you know at the beginning it was a shock you know there were you know hundreds of people in one place it was very busy there were a big class of 30 children so he was you know at the beginning he was quite thrown by it his academic work was pretty far behind all of the others actually way behind but over time over the first couple of years he really i mean his attitude to it was amazing he was really determined to make it work he loved going to his school he really felt good there and you know within a couple of years his academic work had caught up with everybody else and it was actually starting to excel it was starting to to be really quite exceptional so yes it was a good start in the new school what happened then though there was a there was an issue of bullying unfortunately when he got to about seven years old and you know the other children may not have realized that it was bullying but it was you know as far as they were concerned it was a case of they found a way to get what they considered to be a funny reaction out of him and they kept pressing that button and every time they pressed it it was it was an extra element of trauma for Daniel and after quite a long time of this it just became too much for him so he went through quite a serious regression at that time and he became really disoriented you know all of the games that he'd made since starting school they all just totally reversed actually and he wasn't able to to really be in that situation anymore he was still adamant that he wanted to go to school every day but when he was there he was totally disoriented and it can't have been doing him any good so we moved him to an autism school and he's actually he's actually been doing a lot better there you know it took a long time for him to get his confidence back actually and you know the knockbacks that he received during that that bullying period you can still see the effects of them now you know there's still he has a much higher level of anxiety now and fears than he had before that happened around other people around like in social interactions not not only not necessarily only in that sense it's it's almost like it's transmuted into a sense that the world is not safe and so everything is not safe yeah well I can imagine that that's quite contrary to the idea of containment I suppose yeah totally because if you go in every day to a school and you know that what you expect to be to have a negative experience there it's obviously going to affect and quite a lot isn't it yeah and you know it's it does and it like you say it's the opposite of containment and whereas containment is about bringing about trust bringing about confidence bringing about that you know that sort of sense of joy in life the bullying did the opposite of all of those things and so he's now carrying a lot of anxiety and a lot of fears which you know we're working with as best we can and just in our family but yeah it's a real shame it's a real shame because you know parents have to make this choice do you go to a mainstream score which will give the child exposure to the world that they're going to have to live in when they get older and you know the idea is the thinking that we had was well that will make him much more resilient in the future as opposed to a special score where it's a protected environment and you don't have the exposure to that however the other the flip side of it is that in a mainstream school everybody knows that children can be exceptionally cruel and you know that can happen and it did happen to the extent that it undermines and makes impossible that aim of getting that exposure to increase resilience and comfort and happiness in the in the world that you'll have I suppose there is a you know there's there is a dilemma because there are benefits and downsides to to both of them and I suppose that it would be very dependent on how their child is experiencing school I had an absolutely horrific time during school I was very good at primary school I got along with got along with people well I was very I was I was okay I felt good I was all happy I think the main thing for me was secondary school and that's when you know I sort of wished that I had somewhere to go to that wasn't there so it was just horrific you know from everywhere lots of different sources of bullying lots of different especially when you grow a bit older you know there's other stuff coming into play like hormones and different social dynamics and groups and everyone seems to be pushing forward in this sort of social world that you don't really know about and that was the main the main thing for me and you knew you were autistic at that time I did so I was diagnosed when I was 10 and were you supporting the school uh I had somewhere to go to and I had someone someone to talk to if I needed it which was nice but no very specialist support there was no one there who really sort of and no adaptations I guess of school life you know when you when you're at that age you you want to try and be strong and they're the cool person and you know I didn't want to that time to be having such intensive support and I I even shunned quite a lot of the support that I was getting for my mental health because I just didn't want to talk to people about it but I think probably that was the symptom of just not feeling safe with people and I guess being able to catch that in in your son was was probably a very good good thing to do and I would have probably made the same sort of you know same sort of decisions that you have well you know we got to the point where it was like if if this can happen when he's six what's going to happen when he's 12 what's going to happen when he's 15 yeah okay you know and if you're going to make if you are going to choose to put your child in a mainstream school it's so important to to be really really clear about what the school can do because the school that my son went to they were they were they had every intention of being very supportive but they didn't have any understanding of autism any specialist understanding of autism and so they wouldn't necessarily have picked up on the signs that there was something wrong for Daniel and even when we brought it to their attention it it didn't necessarily seem like anything to worry about from their point of view they thought we were being overprotective parents so you know they were really keen to get to to sort of you know do what they could and provide whatever support that they could but without that real understanding and that real commitment to making adaptations for the child that are based on that understanding and being able to notice preemptively what's going on for a child and to step in when it's when it's when the child needs it and probably doesn't even know that they need it or like you doesn't want to take it that's that's critical it's really critical if it's going to be a success and we do the rates of bullying and social isolation especially in school is ridiculously high rates of you know severe mental health conditions as I've said and I think a lot of that is to do with mainstream schools I don't regret going to a mainstream school now that I'm older in some ways if it if I was in a different school if I was in a if I was surrounded by different people it would be good if I'm surrounded by nice people but just because the nature of the school I went to and we had a lot of people who were just you know very toxic and very willing to pick pick on people who weren't able to defend themselves and it's it's a hard one isn't it yeah it is I am not sure you know whether whether one option is better than the other I just think it depends on as you've said whether they have the resources there in the mainstream schools and whether they are getting on because primary school is good for me mainstream secondary school not not too great yeah well I mean exactly for that reason it needs to be a really dynamic thing as well so it needs to be monitored all the time and you might need to switch from one from one to the other as we did but do you do you find that what you went through at school does that have any lasting impact on you now does that you know is that a factor in you know how you are as a person now or have you managed to to fully overcome it by now do you think uh it's it's always hard to know I think a lot of the difficulties that I have it's never been autism that's been the problem for me it's it's always been my mental health and it's it's hard to know whether it's just ingrained dummy it's just biological that I just had like a lower serotonin or I have higher anxiety or just it's it's very hard to tell whether my experiences at school really was was the cause of my mental health nowadays yeah but I do definitely think that it had a long-standing effect on my mental health and uh although I'm pretty much over that hump I still have you know remnants of it and possibly you know a little bit of insecurity high levels of anxiety it's hard to know what I would be like if I wasn't at mainstream school but I'm very happy with how I am now I did a lot I have a good social life now I've I've done well at sport I've you know gone to university and and traveled and stuff and whether that's because of mainstream school I don't know but I think in general even if you are at you know autism specialist school or a special needs school getting getting that sort of contained exposure as you as you said would be ideal for me it's just a assumption but I think that that would be better for me when I was when I was younger but I'm not I'm I don't regress at all because it's you know it's over now I can move on with it I have experience of it and now I can sort of help other people make the right decisions for their children or for themselves and yeah it's all good it's all good now and do things like podcasts indeed yes even though I'm trying to get the hang of it but anyway at the end of your book you boil down your experiences and learning process into five key things for other parents to learn from can you talk a little bit about these well containment is one we've talked about that a lot and a lot of the book you know containment is a theme that runs really heavily through the book because it's so central to giving the best opportunities to a child or to actually any any person one of them was to respect the child obviously it's not helpful to anybody to see a child as having limitations or as having problems look at him as a human being or her and see what what's there within that person and the things that you find difficult well maybe the difficulty is how we're looking at them and how we're responding to them and how we're perceiving them maybe those things have got a flip side that are amazing which we're just choosing not to look at so it's really respecting the child by by by valuing everything about who they are one of them was about patience and just having patience because some of the things that you do to help your child will not seem to bear fruit for a long time and it's a question of really again I talked about intuition a lot but really tuning into your intuition and finding out is what I'm doing helpful is if it is keep doing it and and wait for the response you know and it might just be one of the things I think I mentioned in the book is sometimes it's just it might just be a number of days and you will get some sort of great response from trying something to help your child but during those days it feels like nothing's happening it's it's an eternity it's going on forever it's clearly not working so so that's where the patience thing comes from and the trust as well another one of them is trust and and and that's about really having faith that your child knows what's best for them and that your child is going to take the best of any of the good experiences that you give them you know it's almost trust that you don't need to step in and do everything for the child you don't need to be over protective because at the end of the day that's going to make the child less confident more dependent and the last one is looking after you looking after yourself as a parent because you know for us it was it unbelievably draining because of the path we chose them because it was so intensive for other families it's unbelievably draining because they don't have a path like that and they're dealing with meltdowns for years and years and years on end and they have no idea how best to to support their children so it's about being compassionate to yourself as a parent and about not being demanding not feeling guilt it's so easy to feel i'm not doing enough it's so easy to feel well look i'm going flat out and i'm killing myself but it's obviously not enough because he's still suffering or she's still suffering and it's really about cutting yourself some slack and being satisfied that you can only do your best and if you push yourself beyond your best it's going to be counterproductive because it's going to take away your capacity to help your child it's going to leave them with less help because you're spending too much of your time beating yourself up when that energy should be diverted to doing the best that you can whatever that is however limited that is to help your child brilliant i couldn't have said it better myself that is a nice little list list of things to take away from this podcast it's been really great to talk to you guy if you want to check out guy's book and the organization i will put the link both of these in the description on the podcast it's available on Spotify i'll put it on youtube and it's available on a lot of different sort of audio platforms so if you just check the description down there you'll be able to find them is there any of a sort of social medias or links that you want to put out um the website is transformingautism.org org and i don't know all of the social links but they're in the top right hand corner they should be links to the the twitter and facebook and linkedin and all of those things brilliant i'll try and put those down in the description as well perfect brilliant thank you so much for coming on talking about your book if any of you have enjoyed the podcast make sure to tell your friends share it and consider heading over to my youtube channel aspergisgrowth where i talk about mental health autism self-help all of that good stuff if you have any ideas of who you want on the next episode or a sort of future episode or you have an amazing story or accolade you want to talk about yourself you can contact me at my email aspergiscgrowth at gmail.com with all that said and done guy thanks so much for coming on the podcast did you enjoy it certainly did brilliant thanks so much for listening and i'll see you all in the next couple of weeks where i'll talk to the founder of chewy gem a sensory items company for autistics i'm tomas henley and this has been the 40 autie podcast thank you for listening see you later