 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 tantalizing tongue twisters out of the way, let's get into the show. Hello everybody and welcome back to the Forty Autie podcast. Thank you very much for joining me and my lovely guest today to talk about something that's a little bit different to our normal topics I suppose. It's something that I found very interesting and it's peaked my interest a lot and today I've got Lottie here to talk about her experience in being wrongly misdiagnosed and admitted to a hospital. Lottie how are you doing today? I'm doing good thank you. I'm very excited to be talking to you. Yeah so you're doing good. You're a little bit different to some of the other guests that I've had on because you put a lot of work into like structuring what you were going to say and stuff. You sent me like some some documents and stuff about what you wanted to talk about and stuff so I can tell that you really want to do this podcast. Yeah I was just really excited and I guess I have a lot to say and I just wanted to let people know my experiences and I didn't really want to miss anything and so yeah I really got into it I think. It's good to have an outlet, a voice to let people in the world know about all the negatives and positives of being in this world I suppose. Yeah exactly I want to be as honest as I can that's the most important thing and yeah just sort of tell my story I guess. Would you like to give us a little bit of an introduction into who you are and what you do? Yeah sure. So I'm Lottie, I love photography. I have done photography for as long as I can remember really. At the moment that's a bit it's a bit impossible to do photography. Oh of course. Yeah so I'm just sort of in my garden sort of just taking pictures of my dog really which isn't as thrilling as portraits which is what I like to do but keeps him busy which is good. Because we are currently in the the Covid isolation period. I don't know whether when this goes out we will still be in it but hopefully not, hopefully not. Fingers crossed. Yeah it's been it's really crazy time but keeping positive and just getting through it I guess that's all you can do. And you have a Instagram page that you share some stuff about autism and? Yes yeah I mean I started I honestly have not been and I haven't had that account that long. I guess there are a few reasons why I started my Instagram page. I mean I'll go into reasons later but I just I just love meeting lots of other people who are autistic too and just you know talking about our experiences and stuff like that and everyone on Instagram in that community are just so lovely and I've met so many lovely people honestly and it's just like an amazing thing to be part of so I'm really grateful for that. And what are you well what were you working as before all of this craziness? Yeah so before I was a nanny I did sort of part time nannying and also on the side I did photography. I did a lot of photography sort of towards the end of last year where I was sort of working with various people doing lots of call shoots but then it's sort of I don't know maybe I got a bit anxious and then just sort of you know went away from that for a while but now being in isolation I've had all this time to think and now I just want to get back to it so you know it's my passion at the end of the day so I just love it I really want to get back to it as soon as possible really. Well I've had a look at your your photography page and honestly like some of the photos that you've taken they're like top standard if I can say they really are brilliant. Oh thank you so much. I saw on your page initially that you sort of did photography and stuff but like yeah pretty cool. Yeah I mean most my photos are portraits I just there's something just so special about you know portraits and just photography in general I feel like photography gives me another language it's sort of it's like I'm able to speak through the portraits sort of expressing things that I couldn't probably communicate as easily verbally and obviously I love the practical element of it because I'm definitely not one to sit still or sit sort of at an office or you know do that kind of job I just I love to be on the go and just being outside just I love it yeah it's definitely where I feel most free and happy so. I definitely empathise with the sort of expressing things that you can't particularly explain because I feel like verbal expression only only goes to a certain extent as there's only so many words in the English in the English language and any language to be honest that can sort of describe things but I feel like like things like photography and art and and music and stuff they have sort of that that quality where you can try try try your best to encapsulate a certain feeling or a emotion or an experience and create it into something that shows other people a more sort of full of you with what you're trying to put across rather than now putting it through words yeah exactly it's very personal I think art and every artist is unique because nobody can really recreate a photo you've taken particularly in photography because obviously you have to be there at the right time at the right moment clicking the camera at the right time so I feel like with photography it's everyone's all photographers are unique because nobody could copy a photo really and everyone has their own emotions behind the photographs and what they're trying to achieve and what they're trying to portray it's it's yeah it's a great feeling to be able to sort of just I don't know create emotion that you can't yeah verbalise I guess it's good to have a creative outlet yeah we did also have a little bit of a sort of pre chat before we started recording about sort of your writing and stuff and you told me that you were writing a book yes I I guess I mean I'm not a writer I mean I guess now I am but I've never I'm dyslexic and I've never been that confident in my writing abilities I mean I love it I I love writing but I never had the confidence to actually you know decide to write a book and to do that yeah I just I really love it and I just again it's sort of similar to photography because you can you can say you can speak as much as you know you want but sometimes writing it down on paper or typing it is just you you're able to get out a lot more than I feel you would be able to when you're speaking and yeah it's it's creative there's there's not really many rules obviously there are rules when it comes to writing but you're free to write whatever you want and you can kind of offload anything and everything and yeah I just I just find it really therapeutic it's sort of like gets things off your mind doesn't that yeah it's like you have all these you could have all these ideas and thoughts sort of buzzing buzzing around you in your head but until you actually put it down it's it's hard to sort of concentrate on anything else it's like with I know that that writing is often quite you know like doing a diary and stuff is obviously quite therapeutic in terms of sort of yeah getting things out plainly and explaining it and and putting it down and then obviously closing it and putting it away it gives you an outlet so that you don't have to keep yeah having those thoughts buzzing around in your head yeah definitely I totally agree with that and I feel the same way it's just it's so freeing and yeah you can just I mean you're free to write anything it's it's really it's really helpful for me almost like a type of like meditation yeah I think I totally agree I think it is to be honest yeah it's really helpful I love I love you know being able to just write down whatever I want to write so yeah today we're the sort of the main thing that we came on to talk about was the topic around misdiagnosis and obviously misdiagnosis is a big deal because it affects how you're treated it affects all aspects of your life really and if you obviously if you get misdiagnosed then it can sometimes be catastrophic and I think one thing about your case it's the thing that you're you're here to to talk about is that it went really wrong for you in terms of being misdiagnosed and you sort of were diagnosed with sort of all these types of mental disorders and stuff which which most of them now from what you've told me prior to this aren't a part of your diagnosis am I right yeah so um what what sort of initiated your admission to the hospital like when did you start getting diagnosed with all these things and what were they and why were you put into put into this hospital I guess I guess there are lots of reasons why I was obviously admitted into a psychiatric hospital like they didn't put me in there for no reason I guess it was a long build up of things deteriorating until it got to a point where I was basically just a big risk to myself um I was very very depressed and I wasn't safe at home and it finally got to the point where I suppose doctors had no choice but to section me under the mental health act which basically means I had no choice I had to go into hospital um at the time I I mean my initial diagnosis was PTSD and depression when I was diagnosed with PTSD and depression autumn autism was actually mentioned by my psychiatrist at the time when I was 15 but nobody followed up I mean I guess their priority was my current mental health state which was really declining by the minute and that in their eyes needed treating really quickly but I suppose before it was mentioned at age 15 I think I think people didn't pick up on it um as I learned to mask a lot of things I was seen as a very difficult child and people just thought I had behavioral problems um but I guess they never looked into the root cause I mean I was actually diagnosed with dyslexia at age 11 I suppose that's when people first realized I wasn't just a difficult child there were you know more things going on so yeah I mean I guess that's yeah that's what happened so the the reason why you were that'll put into the psychiatrist psychiatric hospital is because you were sort of harboring a lot of sort of dangerous thoughts towards yourself yeah yeah that's that's pretty much the reason and I had actually um you know acted on those thoughts when I was just 15 before you know I was in the hospital so I mean it was you know it wasn't a good place and I wasn't in a good place and they sort of they had to act you know quickly I guess hmm well it's very it's very strange for me to just like hear that because I was diagnosed with depression and anxiety along with some dissociative disorders when I was about 14 as well and I I sort of went through well to be honest I sort of dip in and out of it but I went through a lot of cycles of quite severe depression and since since the age of 14 I harbored a lot of like you know like suicidal thoughts and stuff and I made a few very poor attempts on my life if that if that could be poor it's probably a good thing isn't it but yeah and um I I never really was it was introduced or that they never saw a concern for for me to be put into a to that kind of thing when I was that age so it's it's very strange for me to to hear to hear that because it's obviously very much in the hands of other people I suppose as to whether you get sectioned or and stuff like that I think it does come down to the individual doctor I mean I guess they have a set process they go through with every person but yeah I guess I guess I had been I had a long period of time where you know they were trying to keep me out of hospital it wasn't just like a sudden right this has happened you need to go into hospital it was it was a long stretch of time where things were just deteriorating I was you know being brought into the emergency department more and more and more and I think finally they just it got to the point where you know that couldn't carry on it wasn't fair on me and it wasn't fair on my parents either so I guess they were left with no choice really yeah um were there were the times that you were you were admitted was it was it due to like um sort of like self injury or was it attempts or yeah both really um I also think they had put me on medication which was really looking back detrimental for me really I had a lot of reactions to the medications and I think looking back it just made me so much worse um and I I do think that contributed as well to my mental state declining and me ending up in hospital but obviously there was no sort of evidence you know that I that was happening that the medication was making me worse and what what types of medications we we put on sort of prior to to it was it antidepressants everything and anything really um cocktail it was yeah pretty much it was antidepressants antipsychotics mood stabilizers you know tranquilizers just honestly I mean I was 15 and I was on an probably two antipsychotics and no I just don't think any 15 year old should you know be put on an antipsychotic really and what was the reasoning I mean honestly I think my I think looking back they I thought I had periods of psychosis but I think really it was just you know meltdowns or shutdowns I I sort of lost my ability to speak in those episodes and yeah became really my behavior became quite extreme and I wouldn't be able to communicate and you know there'd be a lot of shouting I think I think a lot also a lot of frustration because I couldn't communicate you know I just I just lost my ability to communicate and I think maybe to them that looked like psychosis just because I wasn't communicating I was unable to speak I you know I was doing kind of I guess strange things I don't know sounds a lot like to me it sounds a lot like a typical meltdown to be honest like yeah yeah definitely I mean that's what I I think looking back it really it really was a meltdown I mean I've had meltdowns throughout my whole life and it was pretty much the same as when I was younger except I guess I was more it was a bit more extreme just because I don't know I was older I was you know stronger and and yeah I think that's what it was there was a but I'm I'm currently reading which is I think you know what I've said I said this in the last last podcast but I need to sort of it says called the self-illusion by this guy called Bruce Hood and he's he sort of goes in about you know all the aspects of what we consider to be the self and stuff and he's got a particular um sort of chapter or two on like adolescence and children and stuff and he said that there's a specific part of your brain that that is responsible for sort of inhibiting actions inhibiting behavior oh yeah so stopping stopping behaviors and looking back at my life there is definitely a big difference between meltdowns when I was younger and meltdowns that I have now like yeah I feel like there was a lot more of that sort of anger frustration component to my meltdowns when I was younger as opposed to now I can in terms of like you know the crossover with like psychotic episodes it's it's mind-boggling that nobody sort of understood like or just said hey maybe she's not having a um psychotic episode maybe she's having a meltdown and she's autistic so yeah like I know that that when when you have meltdowns particularly for me there's a lot of sort of self-injuring kind of behavior for me because you know you know when you get into when you have like meltdowns it feels like your brain's sort of going around in this massive sort of spiraling's fault loop yeah definitely every time that you feel like you're calming down your brain sort of goes haywire again and you sometimes sometimes you sort of like try to what I do I sort of hit myself in the head when that happens so I can sort of see some aspects that may be considered to be fairly psychotic but it's just so it's crazy right I know I know I think that when it gets you know written on paper you know that I have psychotic episodes or whatever I think that's on you know my records for the rest of my life so I think it just gets passed on to each psychiatrist that I'm with and they just sort of you know see that and just carry on believing that I think it's hard to sort of break that that belief yeah I can imagine but that's that's that's crazy was it sort of a joint decision with your parents to get sectioned or is it more of the doctor yeah you you have to there's quite a long there's quite a long process that you have to go through for them to section you you have to your psychiatrist has to you know believe that that's the best option then they have to get another psychiatrist who isn't doesn't belong to the hospital or anything and he's completely separate to then assess the situation and also agree and then they have to the social worker as well and you know it's a big it's a big process to have to go through and you're just sort of you know having to talk to so many people and it's very very stressful and you know I was sort of you know constantly was trying to fight my case to stay out for hospital but you know always ended up dam just suctioning me so it was really really horrible I can imagine I'm sorry that that's happened that that happened to you is that is hard to hear I mean I'm in a better place now and I've been free of hospital for you know a good few months now which is actually the longest time I've been free of hospital in the last few years which is you know amazing I'm in such a better place so I'm really really glad that that's the case really never again never happening again yeah um the next question that I thought I'd want wanted to ask you was what were you diagnosed at that time with and why do you think that they they didn't realise that you were autistic at the time so my initial diagnosis was I think I've mentioned this but it was PTSD and depression and they you know there was a reason behind the PTSD and there was a reason behind the depression so I understood that you know that that was a fact I did have PTSD you know I was depressed but as as the years went on I suppose um you know my diagnosis changed and you know they they diagnosed me with OCD bipolar affected disorder borderline personality disorder I also had an eating disorder I think I mean the real you know the correct diagnosis was depression I you know that was you know that was a fact but as the years went on it just you know it all changed and they started labelling me with all these things that just weren't correct like I would I would relate them to some extent but it really didn't explain you know my whole life and you know what all the other things that were going on so yeah it was they were yeah they I really was you know misdiagnosed and autism I mean it was mentioned when I was 15 um but they didn't follow up they didn't follow up and um yeah it was it's frustrating to look back and you know look back on it and just see how misunderstood I was um I mean it I had I I'd never thought about this before but I sort of went through all the hospital admissions I've been I've had and you know it was 18 hospital admissions before you know somebody finally was like you know I don't know what's going on I you know I think I think you need to go for a second opinion and when I went for that second opinion the psychiatrist immediately said he thought I was autistic and he was really quick to um refer me for an autism assessment yeah so it's just interesting how you know having a different a new pair of eyes just to look on the situation and yeah yeah but I could I could sort of just by just by sort of thinking thinking about it I could sort of see you know because because of all of these sort of external factors that you were you were getting as well as it's obviously as you said you started off with sort of like depression and PTSD um I can sort of see why that you know they might start leaning towards other diagnosis is because you upon so many different medications and that's bound to have an effect on how you function psychologically and physically like totally yeah and then also the fact that you you know you're in and out of hospital having a lot of traumatic experiences um it makes it makes sense just to some extent that about why they might have misdiagnosed you yeah totally yeah I mean it really it really sorry go on it really it really does I can see I can see that point of view I can see why you know you're right I I started out with depression and the more medications I could put on the worse I got and I can just see why they would assume all my issues were because of mental illness and why they didn't really think about anything else because you know they they really I mean nobody ever really asked me about you know my childhood or anything like that it was honestly it was it was my the traumatic event that's happened when I was 14 um it was a ski accident and nobody really asked me before well you know what was going on in my life before that it was you know that was the big event that happened and that's why you know everything spiralled but you know I wasn't you know happy before that anyway for you know for most my life so yeah nobody really you know I could see why why they would you know go along that route and why everything happened the way it did but it is it is frustrating is the is this sort of the pts side of things something that you that you want to talk about or is it something that you I mean I mean yeah I can I'm happy to talk about it I mean it was a long time ago now and I'm really you know okay with it um but basically I used to ski race and I did a lot of training on like dry slopes in in England and I had quite a big accident one night and you know from there on I it was a long recovery process physically because of the head injury and you know various other things and um but looking back on it I think to be honest and from really honest it wasn't a very dramatic accident it was the way my body physically and mentally responded to the accident like my my body was in shock for so long it reacted quite extreme and I think I've always been like that my mom always said you know she found it really hard to calm me down if I hurt myself or you know I just I was I was very dramatic when it comes to hurting myself but I feel like I feel pain a lot more so I don't know I don't know if that's you know me being autistic or something but yeah I I feel like my body reacted basically different to how maybe neurotypical person would react to it basically yeah I get that I feel I feel like that well I mean that there is you know everyone has a different sort of sensory profile and um me in particular I I can't I can't deal with sharp sort of I can't deal with like sharp pain so anything like needles or yeah nettles or anything and or extreme heat or not not even extreme heat just like a hot shower or something can be more a lot more painful for me than than what other people would experience and yeah and then on the other side I I have a very high in insensitivity to sort of like dull pain so because I I used to sort of be an athlete and stuff and I used to fight in a spot called taekwondo she's just basically like boxing with your legs yeah and I am extremely insensitive to dull pain so I can I could take a levering and be alright but as soon as someone said that I was going to the dentist I need to get a little needle in the uh in my gums that would yeah you know I'd have to be sort of coaxed into it over the course of a few weeks so yeah I think you know like sensitivity to pain and autistic people can be different yeah according to each person I suppose yeah but what about the the depression side of things like what's your your story with that when did it sort of start when did you start to get those feelings and when did it really sort of become an issue I think um it you know I started getting depressed probably just around the time before my accident really um I lost a lot of friends I really wasn't enjoying anything and I was extremely anxious and then when I had the accident it sort of really kind of exaggerated that feeling because I was alone I was out of school and it really made things spiral but yeah I mean I haven't you know always being you know happy bubbly you know full of life person I've always had struggles and barriers in life and I I feel like that really affected my sort of self-esteem and confidence so you know as the years went on that sort of just got less and less and you know it was only it only needed like one thing like that accident to really trigger everything and take you over yeah take me over and uh yeah so I think maybe for a huge part of my life I was depressed but it was really obvious yeah around that time of my accident so did you sort of show signs of depression when you were sort of uh pre-adolescent I mean something that came on you know when yeah he came about yeah um I mean as a child you know my mama said from you know about the age of two I would sort of harm myself I you know I would hit my head I would just do you know pick up my skin I would just do you know things like that and that carried on throughout my whole life and I feel like because I was the first child you know my you know my mom didn't really know what you know what was right and what was wrong you know she just sort of thought that was you know me and she you know she accepted it but I guess I guess before my accident my mom I think probably around I think was around the age of 11 um my mom did try and get me to go to a psychologist a therapist because you know I had so many sort of fears in my life I was you know imagining really horrible things were going to happen to various people and it just yeah she she wanted me to go and see a therapist but obviously at the age of 11 when you know I didn't really understand myself I you know thought absolutely not I'm not doing that um it was a very scary thought so yeah nothing I didn't really get any support I suppose with how I was feeling but I didn't really know how I was feeling I wasn't aware I was feeling you know I didn't know what depression was she got that aspect of finding how to understand emotions as well with the autism and stuff definitely and I found it really hard I've got a lot better at this but I did find it really hard when I was younger to sort of express how I was feeling and talk to people about how I was feeling and you know so I I guess that was another reason as to why nobody really understood what was going on but yeah yeah because um prior to sort of adolescent kind of age prior to like um 13 14 15 I was I was always a very kind of positive and bubbly little kid yeah I would go up and talk to people I would you know sometimes maybe a little bit be be a little bit cautious and a little bit sort of anxious and afraid of of social interaction but it was I was always very different to how I was in adolescence so there was at some point a sort of switch that just just clicked yeah yeah and I think to be honest most of us I feel like the majority of my sort of difficulty with depression and stuff would be you know neurochemical I don't feel like a large part of my depression is something that I can do something about without you know there is a large aspect of managing it but the actual sort of feeling that you know there run out you I probably don't need to describe it for you but you know feeling like nothing changes you know you feel out of your body sometimes you feel like you want to crawl up in it in a ball and just yeah escape from things yeah and I do know from some from the sort of prior research that I did at uni that depression usually usually comes on as a a consequence of chronic pain whether it's physical pain so like you know like fibromyalgia and any sort of chronic illness yeah or chronic emotional pain so like anxiety bullying all that kind of stuff and I might in my case I think being my depression came on as a result of the sort of emotional side of things I found it extremely difficult especially like during secondary school when it got a little bit more crazy the whole social world definitely yeah secondary school was honestly an awful awful place I think it's it's really hard especially you know you're undiagnosed and you know you're sort of living a life of a neurotypical but maybe you know everyone expects so much of you and I just feel you know it's a tough place to be I mean it's you've got to learn how to sort of adapt to everything basically it's a very hard atmosphere and I think yeah especially if you're autistic it's it's really hard so um I I'm I'm really sort of interested in just the whole like psychiatric hospital kind of experience so it sounds like I'm I'm talking about it like it's like a holiday retreat or something but um it's not intended that way but I I recently sort of watched a a film I can't remember what it was it was about this this girl who um was diagnosed with depression and she was sort of admitted into sort of a psychiatric hospital and and she she's basically you know quite quite high functioning depression kind of person yeah and she was she was sort of surrounded by a lot of people with a lot of various sometimes extreme sort of personality and mood disorders and psychosis and stuff and when I sort of started chatting to you and asking you what what you wanted would want to talk about and you mentioned that I was like wow I could you know I thought that I could get a good enough of an experience from from watching it but I wanted to you know know what it was actually like yeah so what what what was it like like yeah what were the the workers like what were the people like and so so first of all the environment you know in a psychiatric hospital is extremely chaotic you know everyone's very unwell um you're surrounded by like you say people sort of schizophrenia uh you know just psychotic illnesses basically it just makes it extremely hard it's a very lonely place because you know a lot of people are so unwell that you know they they can't really you know hold a normal conversation and so it's just very lonely and the people the staff were all so different I mean you know some some would treat me like an individual and others just sort of treat me like another patient which was really hard I think a lot of the time you know they're very busy and don't have time and but it's just yeah it's it's um it's really it's a really horrible environment especially if you know you're autistic and you have maybe sensory difficulties and you know it's it's really hard to adapt you know it's just you're basically being thrown into something which is totally you know totally different to what yeah a sharp dang something you've never you know imagined in life could exist and it does exist and it's scary it's really really terrifying it's terrifying environment being and and honestly I wouldn't wish it on anyone it's it's it's horrible it's really horrible and um um so I'm trying to sort of envision what it would be like I mean being being autistic anyway I think there's a lot of anxieties around people because obviously we miss out on some of the body language and facial expressions and tone tone of voice and context of conversation in in those sort of daily things or at least on them in the moment um maybe maybe we can understand them in reflection but I feel like there's a lot of anxiety around people because it's like we know less about people's intentions on the spot yeah so I think most autistic people would be able to sort of empathize with feeling like people are just they're so unpredictable yeah especially when younger yeah and I can't imagine what it would be like to be in that situation that you were in where to neurotypical standards those people are significantly unpredictable as well yeah yeah uh it's I mean it's such an unpredictable unpredictable environment I mean usually those hospitals have around 20 to 25 beds in the hospital and they're quite small they're you know they have the corridors with the rooms and then you know they have you know a little sitting area and maybe a dining room if you're lucky but it's it's a lot of people you know confined in a very small space and it and when everyone's you know unwell it is unpredictable and I mean yeah it's hard to know what anyone's going to do like because they're unwell let alone all the sort of with their intentions with social nuances yeah yeah yeah so it's it's yeah it's incredibly unpredictable so could you could you take us through like a sort of typical day in psychiatric hospital yeah yeah sure um so normally you get woken up for breakfast that's around eight o'clock and is that mandatory well it's meant to be but I slept through them waking me up countless times I mean honestly they'd always have to get the toaster up for me at about midday just so I could have breakfast um but yeah it's meant to be mandatory but that was eight o'clock then around nine o'clock you'd have to go and line up for medication and that would take a long time because obviously there were like 20 to 25 patients and it's just a very long process do you like line up or yeah just sort of stand in a group and no it's a line it's a line and people can get quite you know wound up yeah um so that happens and then normally if you're lucky there's normally an activity just before lunchtime it could be anything from painting to jewelry making if you're lucky and it's it's really to be honest those activities hardly ever happened I mean we were lucky if we got if there were enough staff to run the group but that was the time where you know there was a bit of structure in the day and you know you had the chance to actually keep yourself distracted and focusing something else other than thoughts going on in your head um so that I relied on those groups because it really did keep me going um but as I say they they hardly ever happened anyway then we'd have lunch about 12 o'clock and we that last about an hour and then um then it was just nothing all day I mean we just sort of I don't even know what I did with my time were you allowed to bring any sort of personal possessions or um so we were it depended I mean there were a lot of sort of things that you weren't allowed but I did have a lot of things I brought with me so like coloring books and various other things but for a huge part of the time you know I often wasn't allowed it because of safety concerns and it was you know it was it was hard not being able to have sort of home comforts but you know as you get well again you know you're allowed more things and it sort of gets a little bit more manageable but yes it's really tough having things taken away from you can imagine did you get did you get tough like a mobile or yeah so apart from one time whereas in this quite extreme hospital I was allowed a phone which honestly was was a lifesaver because I could just speak you know speak to my parents you know facetime them just like you know talk to people and sort of be out take my mind off that environment I was allowed a phone um I wasn't allowed out even on the hospital grounds they had a little sort of patio area outside which you know we were allowed out into it was just on we were on like the second floor in one hospital so it was quite high up and it had quite high walls so like you can hardly see anything but it was a bit of sunlight at least yeah yeah it was it was tough it was really really tough and um so so what about your your interactions with some of the other people did you get did you get along with some people to some extent were there any sort of issues was there any you know like hiding and trading of medication and yeah there were I guess over the few years that I did make friends with some people in fact some of the people I met are still friends now like really good friends and um I feel really lucky for that but a lot of the time majority of the time there really weren't people to talk to and as you mentioned there was um there was a lot of not so much with the drugs we were being prescribed because you had to sort of take them in front of the nurses but people did bring various substances and alcohol onto the wards if they if they had leave they would come back with them yeah um so that sort of would you know if somebody came in you know with loads of alcohol it would just make the ward environment so chaotic you know it was already chaotic but if that happened then it would just just go a bit crazy really but I you know I did meet some lovely people there um it's very a lot of people are very agitated in you know in those wards and it's not really a place to sort of make friends I would say um you just sort of want to focus on you know getting better and out of there really so yeah was there anyone who made your stay worse um I think the the first thing that comes to mind is um staff members who made it worse as opposed to patients I think a lot of the patients sort of keep themselves to themselves whereas you can come across staff members who I mean they're trained in mental health but a lot of them really did not seem to have sort of a genuine you know empathy empathy and understanding and you know what you should say to a person struggling on what you shouldn't say so there are a lot of unhelpful comments and people who just you know said things that were really not helpful and yeah so that wasn't very helpful and it would it would kind of make it even harder than it already was having you know staff member who staff members you rely on you know to talk to but if you know they say the wrong things and they don't quite understand your situation or say the wrong things it's just it's just not helpful I can imagine that do you have any people who are you know fairly sociopathic or psychopathic or anything like that there or is it mostly sort of psychosis and depression I think you know there are specialist hospitals for people who are like really I'm like really really unwell and you know you know a danger to others and stuff like that they wouldn't be on the type of ward I was on they'd be on a sort of higher secure ward I mean at one point I was on a higher secure ward only because I was you know such high risk to myself that they couldn't you know manage me on that kind of basic level but yeah I mean yeah so we I didn't really come across those sort of people but you know there are a lot of psychotic illnesses and yeah that sort of thing it was that was probably the majority of the people that were on the wards really were there any sort of times where you felt you know do because obviously you when you're in psychotic at trick hospital you are under the care of a certain organization or medical system were were there any times where you felt a bit dehumanized from your experiences yeah yeah I think so I think as I said like a lot of the nurses sort of treated you as I don't know like just they didn't treat you as sort of a human you know they they treated you as as if you were really well I mean obviously we were all unwell but like they treated you just looking at you like that basically and it was I mean there were a lot of times I mean I guess I don't really want to go into it it might be quite difficult for some people to hear but you know there are a lot of times where they basically forced medication on you and that can feel really awful really like just you're not treated like I felt like an animal really that can be really demoralizing and really horrible so yeah there were times yeah like did they do they have to like monitor you and you're like bathing or was it like yeah so sometimes like for a period of time that you might be on what they call one to one or two to one which basically means you have one nurse watching you all the time or two nurses watching you all the time so if you go in the shower you know they would have to be watching you they would be following you all the time um sometimes they'd even have to be what they call arms lent away so they would literally be within a meter of you at all times and honestly it was it was just horrendous you didn't have time you know to even feel like you're in your own brain like you just felt completely it was just it was awful really geez really tough I can't imagine I mean I can't imagine but it's a struggle for me to sort of see that as real life obviously because I've watched you know a few movies that had you know psychiatric hospitals and stuff but to me they're always movies they're never sort of you just don't think it's real you don't think it's out there until really you experience yourself because nobody talks about it um nobody talks about it and I think it's important to you know make people realise that this stuff does exist and it's it's not right really I mean I know they're doing it to you know for your best interest but I'm sure there'll be other ways other ways around it in the future because it's so demoralising and so awful to have to go through yeah so let's talk a little bit about sort of like treatments and and medications and stuff like what were the sort of main treatments that you went through and what what were the medications that you put on how did they make you feel um so medication wise I mean I was put on medication when I was 15 um and I suppose the older I got the more medications I got put on um I was looking through before this handling medications I've been on because honestly I had no clue um and I think yeah I mean I've been on 14 different types of medication a huge majority of them being antipsychotics I mean I mentioned this earlier um but yeah I mean medication wise I was put on a lot um and I think sort of therapy wise I think it's really it's really hard there's there's very limited therapy when you're actually in hospital their main sort of their main process is to get you on a medication and sort of get you out of there basically they don't they don't do therapy in hospital um I know that private hospitals are different they are very therapy based but unfortunately I didn't have the insurance and whatever to you know be able to go into one of those but I know that they have a lot more therapy um but when I was out of hospital um I guess it's sort of a postcode lottery I mean I know lots of people who you know live in different areas they get different therapies personally in my area um there was sort of minimal therapy I guess and I was so I was diagnosed with borderline personality disorder when I was 18 and um in my area they had a personality disorder service so I was referred from hospital to that service when I was discharged from hospital and um they offered they offered a lot I mean you know they if offered two years of therapy it was quite intensive so like twice a week um and I was with them a year really and then they eventually said to me you know this isn't this is clearly not helping you I mean it honestly didn't benefit me at all um I honest I really didn't relate to what they were talking about I mean I do believe now that I never had a personality disorder so again like that was me being completely misdiagnosed um there are therapies available for people and I guess it's just it's just luck when it comes down to it if you're in the right area with the right therapy at the right time um so yeah that was my experience with I mean I did go through a lot of other therapies but not really for a long period of time yeah yeah cognitive behavioral yeah yeah I mean I still I have a therapist now and she's a she's honestly amazing like she's you know ongoing I've been with her for years and but that's you know that was privately because they didn't offer that in the NHS so we have no choice basically if I if I needed that support you know I had to be able to go that way around you know um well in in terms of like therapy I know that the that particularly for people with with autism there is a I think they did a sort of wide-scale survey for autistic people and they said and they said that the majority of um autistic people who have sort of like mental health diagnoses which is honestly quite a lot a lot yeah it's very severe in fact um don't get the treatment that they feel that they need or at least the treatment that they are getting isn't sufficient and I do you think I think that the autistic people do need a different type of therapy we need we need someone to actually get the differences at a core level rather than just have a general awareness of you know autism aspergers and stuff like that I think it has to be done very differently so I went through counselling when I was in my adolescence for about four or five years um yeah in in and out kind of and I found zero of the sessions any help at all if anything it made me feel more more isolated and misunderstood yeah um yeah they did put me on medications and stuff like I've been on I mean I started on prozac as you do um yeah and phloxatein yeah same and I had that on and off for a few years got myself off it on a few occasions felt great for about a week and then obviously plummeted yeah and then I was put on metazapine which is more of a sort of anxiolytic type sedative drug yeah yeah um had that for a while that was kind of during the time that I was that I did my research placement in Thailand and then um when I came back I was put on another found a really amazing lovely doctor who put me on oh yeah sertraline and I went up to a fairly high dose on sertraline started getting many episodes of panic attacks throughout the day because of it so they took me off it yeah now I'm on I'm on satelopram and you know I've been prescribed um that metazapine and now and again when my panic attacks um a little bit too much they prescribed me you know like typical benzos to to help with that yeah well I just I wanted I wanted to ask as well because um what what were how how did being on antipsychotics feel like what what were there any differences that you could tell yeah yeah yeah 100 percent I mean a lot of them have really horrible side effects like for example weight gain um increased appetite which isn't just like feeling hungry it's honestly it's maybe something you can think about yeah absolutely ravenous honestly like just eating 24 seven and they really affected me and then I guess other things you know you I mean honestly side effects lists gone forever don't they um but like you know they they were the main sort of differences as opposed to like an antidepressant I guess I felt like a complete zombie on them because they made me so tired and so sedated that I just I was just asleep pretty much all day um it really you yeah and I just could not function on them um I really really couldn't I wasn't myself I felt really sort of numbed and empty and just sort of like I was just a robot really just doing what people told me to do and just doing it I didn't I didn't yeah I didn't feel like myself it was they were really um bad for me personally like I know you know that they're really helpful for a lot of people and I totally yeah exactly but um um for me definitely not good um I'm really bad that's crazy yeah so yeah um I wanted to move on to I do want to kind of keep questioning about this because obviously yeah it's quite an interesting thing to talk about you know time's ticking on so yeah let's so we move on to the next question yeah sure why is it that autism can present as mental health illnesses or any sort of related disorders do you think that possibly being female got in the way of you being diagnosed of autism in the first place I think that a lot of people with a late diagnosis of autism actually get diagnosed with mental health illness before being diagnosed as autistic I think especially this is the case as a female I mean I also personally feel that there is a bit of discrimination as a female um I feel like we are more likely to get diagnosed with mental health illnesses and not have anyone look into the root cause I think that you know a male presenting with mental illness I feel like a lot of people deeper into the cause as to why they're unwell I mean I think this is probably due to the stigma around people thinking that it's more common for females to get mental illness which obviously is not true um but yeah I mean obviously you can be autistic with a mental health illness as well I mean you mentioned this earlier it's actually really common um and quite a high proportion of autistic people do have mental illness as well but yeah I think I think a girl being a girl female whatever can really affect how you're diagnosed because I feel like only really in the recent years research into autistic females has only recently you know progressed and yeah I mean years and years ago people assumed autism only occurred in men which is ridiculous and definitely not not the case um so yeah I feel like you know there's a long way to go still with you know research into autistic females but um I think it is improving and also masking is quite common as an autistic female yeah um yeah I think this can lead to a lot of females being misdiagnosed slipping under the radar yeah totally because it's very common and you know we learn to you know hide our autistic self and adapt to different environments and yeah so I think that's another reason and I do I do um from from sort of the research that I've that I've done and and my my mom is quite a big sort of figure in the special needs sort of area she manages quite a large part of of England for special needs and stuff and she she talks a lot about um the differences between guys and girls and from from the research as well it seems that that females seem to be more can mask easier than guys like can engage in social mimicry and yeah fit in and and get an idea of the social environment and slot you slot yourself in and and copy people and all of that and that seems to be something that's more prevalent in in girls I suppose whereas guys guys that I've met generally tend to be quite more on the side of sort of isolated in terms of not really talking that much at all and just sort of staying out of people's way and it does seem that there is a difference in the way that you know autism occurs socially between the you know genders and all that and yeah I totally agree yeah I can imagine that even with the rates of you know borderline personalities disorder bpd tends to be you know from the research more females so I guess that I I guess that there'd be more of an inclination for people for doctors and stuff to diagnose people with that's females with that stuff rather than sort of dig into the probably in their mind the less probable cause of the differences I guess yeah 100 definitely I mean when I was in that treatment for borderline personality disorder there was no man absolutely nobody it was just all females the research has only been sort of has been swayed more towards females with borderline personality disorder but maybe males actually present slightly differently with borderline personality disorder if they have it and maybe it's similar in that aspect possibly to do more aggression more anger management kind of side of things that would make sense yeah yeah and then you obviously have the sort of social influence on both males and females in different ways I guess but it's definitely something to sort of try and you know think about and study a bit more it's I think we're we are at the sort of cusp of starting to understand the human mind a bit more and yeah it's difficult because we know we know a lot of things but we also we know how much we don't know as well yeah and sometimes that can be quite difficult to work with yeah exactly but I think we're in a good place at moment with like research progressing and you know people beginning to understand things more you know it's it's a lot better than say 10 years ago even yeah yeah it's um it's a crazy world that we live in and I mean yeah considering that a lot of sort of psychopaths psychotherapy and psychology workers about recognizing outward displays of symptoms rather than physical causes the symptoms it can although there's there is always a gray area of interpretation or human error I guess that kind of stuff and it's do you think that if people had more of an awareness of autism and asperges around the time that you were sort of going through all these these traumatic events do you feel like that would have possibly given you a new avenue if you'd had known about it to you know sort of a common extent and people around you knew about autism and asperges a bit more especially sort of in in schools I feel like I think you know school was the sort of the one time that I was sort of with professionals who you know maybe knew a bit more than sort of my parents my parents really didn't know a lot about autism and stuff I feel like if school had been more aware at the time and sort of picked up on it then yeah I mean it would have helped me a lot and I mean I can't I can't you know it's a hard thing to think about is it's hard to think you know what would my life have been like had I known of course I was autistic you know earlier on um but I guess all I can do now is sort of you know I'm learning so much more about myself and I feel like I understand myself so much better and I guess you know it's just as cringe as it is it's just like a new chapter in my life you know so yeah I feel like it's just moving on from my past not forgetting it you know I'm never gonna forget it but do you think looking back at those experiences and your journey um do like how how do you process all of that stuff like has has your experience had any negative or I guess maybe positive things I don't know how they can be positive but yeah I think um that looking back on my life in particular looking back on my journey through being with mental health services and in psychiatric hospitals there's I've still got a huge amounts to process and I think I honestly have had a lot of trauma from being in those hospitals and I think you know I've I have looked out a lot of it in my head because I've been so scared to think back to it I think I mean in a positive sort of way I think it has had a huge impact on me because I mean I believe I mean positively I believe that it's changed me at the past then I you know I'm so much stronger and resilient than I've you know than I ever thought I could be and and I guess I've had such an insight into so many things and I feel like from now on I'm never going to take life for granted and I really do appreciate every little thing yeah I am frustrated that you know I was so misunderstood my whole life but you know I have there has been positive you know I think about the little things in life and I really do appreciate them a lot more so you know that's been the positive and obviously the negative has been how traumatic it was those all those experiences give you an insight into things that people would not usually experience I guess yeah yeah I guess that gives you gives you a bit bit more of an understanding for you know a different way of viewing the world I guess as opposed to sort of easy easygoing first world first world living oh yeah exactly I mean I think that's why I've sort of dealt with this whole COVID-19 situation because I've had so much chaos in my life that like now I'm just like well you know you know I can I can deal with it at least I'm at home yeah yeah um so yeah I mean you know there have been positives and it has changed me and I have so much more understanding for sort of people who are going through similar things now I think because I never knew before that you know people could go through these things wow well my mind is absolutely blown by this this conversation is it's like it's it's not not often that I get to talk to someone who's had quite the experiences that that you've had and it's honestly it's been I'm very honored that you're coming on to talk talk to me about it and talk to other people I feel like it gives people a better understanding of their stuff and it's it's it's also very brave that you that you've been so open and and honest about your things quite an amazing person gotta say thank you no I think I think it I think it has you know I'm in the place now where I can talk about it I wouldn't really have been able to talk about this a few months ago but I really do want to sort of make people understand you know about you know mental illness and the experiences I've been through and I feel like you know I'm so so grateful that you you asked me to to come on and talk about it because you know I really wanted to I really wanted to you know even if it's just to you know help one person I feel that it's really important to talk about it's enough yeah so yeah it's been good is this is the the fun part of the podcast podcast system which which is obviously said in air quotations yeah what three things that you've mentioned do you think are the most important things to take away what are the most important lessons or things that you want people to really think about when they finish listening okay um I feel like it's just really important to really emphasise that every autistic person is different um I think you know it's important to realise that the stereotypes associated with autism can really leave somebody being misdiagnosed I guess also going back to what we talked about about females um and how you know they can be a factor getting an autism diagnosis I feel like that was quite an important thing to talk about because it really is the case I mean I know you know research into autistic females is getting better but I feel like there's still a long way to go and I feel like people need to be aware that you know this is the case probably I mean I don't know I'm not a you know researcher but it might be more even about how many men have autism and how many females have autism but we don't know until more people understand you know and how more people understand that you know females do mask a lot and they're more likely to do so and I guess I don't know I guess it was important to talk about psychiatric hospitals I feel like it's really um talked about subject I mean it's a tough subject and a really sort of harsh topic to talk about but it really does need to be talked about and going forward I think hospital psychiatric hospitals really do need to be more accommodating for autistic because I just I genuinely feel like it's it really is an unsuitable environment for autistic people to be in and I feel like that needs to change because I really don't think people are accommodating autistics when they're going to hospital but I yeah I just I do feel like it's important that I've talked about you know being in a psychiatric hospital and you know going into that into detail because I feel like people just don't understand they don't know what's going on brilliant thank you very much so we've got the final final little open question I give to everybody who comes on to talk about autism on this podcast yeah and that is what does autism mean to you I like I really like this question actually I suppose autism gives me a huge amount of strengths strengths that I only that I believe I only have because I'm autistic you know I'm extremely creative and I feel I really do feel as though I see the world differently which you know really helps with my art and photography because it makes it so unique I know that we you know have struggles but I believe I do believe if the world became more inclusive and accepting it would make it easier for us to navigate the world I'm going to leave you on with one of my favorite quotes um exciting stuff yeah well it's um it's sometimes attributed to Albert Einstein but they don't really know but um everybody is a genius but if you judge a fish by its ability to climb a tree it will live its whole life believing that it is stupid I mean this really I just I just love it because for so long I felt I was born on the wrong planet living a life that really wasn't mine but you know now I know I'm not and I'm completely meant to be here um you know being autistic makes me so unique in so many different ways and I'm so happy that on me I guess um so I mean so long I wasn't happy you know you know that I wasn't me and I wasn't happy in the skin that I was in but you know I'm so much more positive now um which is it's really nice thank you for that I like I like that little quote that's yeah I think I've heard I've heard of it before it's um I can't remember who who wrote it yeah it's sometimes sort of linked to Albert Einstein but I think it's sort of unknown really I don't really know maybe it's maybe it's one of those Instagram quotes that people say that it's a quote from somebody important but actually Instagram and then it catches on it's a good quote yeah very good quote yeah very cool so sorry my throat's a little bit croaky today maybe I'm coming down with uh oh no don't no I'll be all right so do you want to give out some sort of like links and stuff to your social media or do you want to you know give some links to your that video that you were talking about before the podcast oh yeah okay so I made a um a film on mental health illness last year and basically the name of the film is a storied mind so sort of storied with ied on the end and it's on youtube so you can probably find anyone can find it on there and my instagram is lots with so lo tts voicing autism your photography page my photography page so many accounts it's lotty b photography on instagram very cool and I definitely recommend anyone out there to go check out at least go check out the photography instagram page because yeah some of the stuff on there it's top top quality stuff thank you I'll have to see if you'll let let me use some of them for my uh video thumbnails obviously the 4t body podcast it's available on spot fire podcasts and youtube so you can always go um check the episode out on those you know maybe sometimes you don't want to be downloading all that data from from youtube sometimes maybe just going on spot fire and checking out the 4t body podcast would be a good idea in terms of my sort of links of course the aspergers growth youtube channel uh mental health and autism videos all that kind of good stuff then you've got my social media accounts at aspergers growth Facebook instagram and twitter and if you want to get in contact and possibly appear on the podcast or have an interesting topic that you want me to talk about you can always email me at aspergersgrove at gmail.com there is also something that I wanted to mention as well which is the documentary that I'd been working on and I think at this time the time of recording I'm still working on it for it to go out but it's likely that when this recording goes out and when you're hearing this it's already out there in the big wide world it's a documentary called aspergers and society and it's all about the link between autism and mental health is it biological is it social give it a watch it's free on youtube I would very much appreciate it so lotty have you enjoyed your experience on the 4t body podcast I've really enjoyed it thank you so much I'm beaming I don't know I've honestly loved it thank you so much um I feel like we talked about some really you know good good things and then yeah I've loved speaking with you thank you so much as I said I'm very grateful that you you've come on to talk about these experiences and being so honest and I'm sure you'll get lots of messages from lots of lovely people thanking you for just how open and honest and lovely you've been talking about these issues that are obviously quite traumatic and negative for you yeah it's very much appreciated thank you so much so thank you very much for watching everybody this has been your host Thomas Henley from the asperger's growth channel and the 4t body podcast and lotty from lots voicing autism instagram page my my outros are never particularly good because I'm not very good at rounding things up um so do you want to say goodbyes thank you so much everyone for listening um yeah just thank you um for listening to my story and just what we've been talking about listening to us monologue about our life yeah and our thoughts and our info dumping brains splurging out information into an audio file for it to be converted into ones and zeros and then sent to your listening device and then converted back into audio and then translated from from the audio that's coming out of your speakers into speech yeah that you can comprehend and understand I'm so grateful for you stay with us thank you for listening guys thank you see you later bye