 My YouTube channel and you're gonna ask me all the questions. You're correct So I'm hijacking it now, so am I correct in saying that you recently learned a bit more about yourself? I have recently learned a bit more about myself. So when I was hospitalized with anorexia, then I got a diagnosis of autism Which was incredibly helpful because it meant that my treatment got completely changed, but it was also a bit of a yeah Mind-blown moment. Okay, so there's loads there and I've got like a million questions But first of all, I think, you know, I'm really interested in Diagnoses and the power of knowing and labels and how that what that means to you So I've got two questions raised now with what does that don't know diagnosis mean to you now and What would it have meant do you think if you knew that earlier? So it's complicated. So now it's really helpful so it's helpful because it meant I was able to get the right treatment And in terms of kind of getting and staying well Generally and with the anorexia and stuff it's been helpful because I now have a much better understanding of what my limits are and why and I'm a Lot more forgiving of myself So I've completely changed how I manage my life. So it's been helpful in that point of view But on the other hand Yeah, I have this issue around being really high-functioning and a lot of my experience in the past having worked with special schools with You know very severe autistic children and things and kind of thinking I don't really feel like I have the rights to that Label I don't feel like I can own it. So I'm struggling a bit in terms of identifying Yeah, and I suppose for me that probably highlights the fact that you know every reason individual. Yeah, and actually Simply that the diagnosis see, you know means a lot more to different people depending upon who you are and where you are Yeah, yeah, so yeah absolutely and it's not like I guess some people don't you know You wouldn't want a certain label and and some kinds of labels certainly some of the ones I've had to do with my mental health have sometimes got sort of stigma or shame or you know Different things attached to them and there's nothing like that with it You know, I'd be perfectly happy to be out and proud about being autistic except that I just I don't know I I don't feel like I I don't I don't know it's a bit hard to own it because I just feel like I don't struggle enough Compared to so many people and I think that's really interesting this notion of struggle sort of legitimizes a diagnosis And again, I think thinking back to what might it have meant earlier I think that's something perhaps that young people find really hard, you know when they say teenagers or certainly when we think about the Diagnostic criteria for autistic girls and that you know that the misrepresentation of that group really in our world Well, you know, what do you think it might have meant differently if you knew this at 11 for example? I think it probably would have meant I would have been a lot more forgiving of myself and also just simple things Like I did find you know school was a place that I loved and it was a real kind of you know Safe space to me, but there were lots of things that I found really difficult I mean I spent basically all of my lunch times and break times hiding And things like the lunch hall were always hugely overly complicated for me So I didn't really go into the lunch hall in my secondary school for basically the whole of my secondary school career And you know things like that I think Understanding it yeah, it would have helped and I would have perhaps been a bit more forgiving and wouldn't have kept on trying to I was constantly trying to force, you know I was a square peg trying to go into a round hole and particularly around social stuff And again, you feel like you you want to want to do things, but it doesn't mean you ever enjoy them and yeah Even throughout my adult life I think I've always kind of had this idea that if I get better then suddenly I'll be the person who wants to have like Dinner parties and do all this kind of thing and I suddenly become really sociable and I yeah come into realization That that's never gonna be my thing. It's actually quite Freeing yeah, yeah, sure and I suppose You talked there about how the diagnosis meant your treatment was different. Yeah, what's that mean? So when I was inpatient with anorexia then the ward that I was on was an eating disorders unit And they did basically all their treatment as group therapy, which for me was really I mean it was actively harmful rather than anything else and other things like I had So so I stopped having to do the group therapy, which is great Everything that then became completely individualized which made a big difference But the other thing was that lots of my behaviors around food were much more around like Autistic type behaviors and traits Rather than being traditionally anorexic So when people were trying to help me overcome, you know fears about getting fat and calories and that kind of thing It was nothing to do with any of that. A lot of it would just be really quite irrational fears and Yeah, just very very rigid choice structure So I remember for example being in a really difficult place at one point when I wasn't eating any solid food And I was living entirely off this this liquid supplement But I would only have one flavor of it and at this point it was before the diagnosis and the doctors wouldn't understand Why it had to be that flavor and it caused a really really big issue And I was absolutely adamant and refused everything and had to be restrained and all this sort of thing Once I've had that diagnosis and they just understood look, okay We don't necessarily know doesn't make sense to us But it's got to be that one and it causes huge distress Otherwise, then we just cracked on and and did the one flavor and we're able to just stop worrying so much about little things And just accept them really so this sort of brings out some challenging questions for me And I suppose, you know I always want to say if you feel they're too casual you don't want to answer something don't answer it Okay, so you're talking there about the sort of the co-morbidity of me even the complexity of those interactions within things Do you think Actually the diagnosis was more important to the people treating you or should they have been able to understand The need for that personalized approach for you irrespective of the diagnosis No, I think the diagnosis was really helpful actually because the thing with anorexia is it does You kind of you do quite a lot of unreasonable things and you do become quite manipulative and you there are some strange behaviors and difficulties that go with it And you would often see some of these quite challenging behaviors from people And and and one of the jobs of the of the clinician of the doctors of the nursing team is to actively challenge those things But for me that wasn't helpful that challenge wasn't helpful. It was actively making things worse Whereas if I'd been Yeah, more traditionally anorexic rather than the sort of yeah, atypical autistic kind of line And then that that challenge would have been helpful. Um, but yeah for me it was it was it was actually helpful So yeah, I think it was important for them and and yeah giving permission to revise their treatment I mean it meant we were all then slightly a bit like yeah, because this is quite a young field And I suppose again, I think that's an important word Giving people permission. So it's it's it's almost like it's allowing a certain court, isn't it? And I'm wondering whether actually some schools think like that when there's a label of diagnostic Criteria or some information comes out that they feel they are legitimized and approached that they wouldn't otherwise And I suppose I'm thinking why do you need that to do that if it's right for the person? Why don't you just do it? I guess yeah, I guess so I yeah, that's true. Although I think I don't know in a way I think it it does help It can help to understand and also just some of the the tricky things day to day So really it sounds like a really silly example, but it was a big deal for me The room where I had therapy when I was inpatient had this clock that was really loud in it And I literally like I I really struggle with with with the sort of sensory overload And this clock I remember in particular whatever was going on in that session I couldn't focus in on anything. Yeah, um because of this clock and and it really really really bothered me And you know and I've said so many times I want to get rid of the clock and literally after the diagnosis Then then they kind of like oh, yes, that's fine. It's sensory overload will get rid of the clock And actually then I was able to focus in on the therapy and before that they felt like I wasn't engaging And it wasn't it's just that my therapist was asking me really hard questions and all I could hear was this blooming Do you know what I mean? Yeah, and I think that happens in schools a lot with things like projectors and things like that where perhaps a A person who has a sensory overload or some Heightens needs in those areas is sat under the projector. It's buzzing away all the time And you literally cut and that's it and I think I think I think the thought I was making excuses up until that point I think literally, you know, they're like, look, it's a clock get over it But then once you're like, I'm autistic and it's a clock. They're like, oh, you're autistic and it's a clock the clock can go So I suppose thinking about who might watch this or who might understand this story or how it might improve other people's experiences You know, how do you think the people in those clinical settings actually might go about things differently? I think I think one one of the things is actually just bearing in mind that autism is a possibility Because for me, it was something that was Suggested really late. But when my psychologists and psychiatrists, they basically like how do you not already have a diagnosis? I thought I was they thought it was pretty obvious Um, but I think it just hadn't been considered before that and I think it often does get masked by eating disorders So we think that there is a quite a high degree of comorbidity And the other thing is that when your brain is starved like anorexic thinking and autistic thinking often there's quite a lot of similarities there So I think people who are treating for eating disorders having an understanding of autism Anyway, that will help them to understand some of the really rigid thinking of their their underweight patients um, but yeah, I think being kind of open-minded really and also just perhaps Yeah, maybe seeking a diagnosis where there is the possibility of one not kind of closing it off So I think we can get so hung up on, you know, I think my treatment team At the time were so worried about, you know, the physical danger I was in because I was so underweight that they're perhaps not really thinking about the bigger picture But actually for me, I wasn't able to get better and get out of that physical danger zone until we revised the treatment quite radically I mean I was just getting iller and iller So, you know again thinking more about So the work I've been involved with I suppose my lack of knowledge in this area really Um, you know, I suppose you go to hospital. You are in a medical process there You are being treated to be better And I suppose, you know people Um, think it's almost like you break your leg and then you go in and you're fixed as a result Well, you can't be fixed in a way, can you? So what what, you know, do you think there's conflict within the understanding of that? um Yeah, and that's something I'm still kind of very much sort of coming to terms with really is understanding Because obviously it was one thing when I had that diagnosis and I was very ill And I just had so much to manage every day anyway But now it's about what and what does this look like when I'm well because for me, you know Well and managing day-to-day and being healthy. It doesn't mean the autism is going to go away So I have to learn to manage that and know what that looks like and know how I own that And if that's something I share and I yeah that I don't really know the answer to any of this And so, um, I suppose I often think of things like this in terms of quite crudely in terms of risk and resilience factors And and what builds in the resilience to help mitigate or support those those areas of risk And what would you say personally on your biggest resilience factors? I think the people around me so everyone around me has been incredibly Helpful and kind and I have generally found that if I'm a bit more open about that, you know The autism and the things that I find difficult people are really forgiving So things like is you know, I work at a lot of conferences and I love, you know I love the work that I do but it is it does really take its toll on me And actually explaining to people when I'm working with them actually, you know I might not want to have lunch with all your delegates So I might need a room somewhere and then providing that space and time Um can make a big difference. So yeah being able to be open and honest about it And people having a bit of an understanding is helpful I think the other thing for me, as you know, I've gone on about climbing So yeah for me though the climbing wall is somewhere I can go and however, you know Whatever state of kind of overwhelm I'm in and and I can get very very anxious But I'll go to the wall and it's literally like you hit this big reset button And then I'm I'm ready to go again. I can do people again after that And I think, you know, again, I sort of term it in school sometimes like these positive care Rootings things that you do all the time that feed into a really important sort of So baseline to help reset in a way and I think again for some of our learners it might be Pets and animals which is important for some people in sport And I think what we found recently when we're doing some work with some of our autistic girls is that A lot of the activities they were engaged in were wholly reliant on an adult A parent or carer taking them to the activity and really investing in that And when they didn't have that opportunity or it wasn't possible within the family group Actually, it limited their opportunities to engage in different things. So I'm thinking and I don't really know the answer to this That actually lots of properly supported community activities and sport with understanding Is really important to give you that opportunity to find that thing the grounding point or whatever, you know Yeah, yeah being able to find the thing that that works for you. So you don't yeah That's it for me. I kind of stumbled upon it almost by by chance But but by the same token and say lots of different things can be helpful So again, you know for me and my dog actually getting up and getting out with my dog every day is really important routine Having a routine every day and knowing so for me again that the holidays are off in the time when I really struggle And now I understand why that is, you know, I'm someone who needs and thrives on routine And school holidays come along and suddenly my kids haven't got to be up and out every day And everything goes to pot Actually now we have an understanding in our house that that routine kind of needs to stay and And again, my family have been great about that and that does really help and actually I think it's good for all of us Yeah, yeah, absolutely. I sometimes think that the kind of accommodations that you make to kind of manage autism They're actually a lot of those accommodations are good for everybody in many ways, you know It's a bit like you're saying actually you find after these things having a bit of time out on your own So I'm I'm literally sometimes a bit like after all this people in I want to be in a darkened room on my own But I think actually to some extent that's that's that's normal, isn't it? Absolutely, and I think you know understanding the importance of routines. I think it's essential, you know, and again It is different for everybody, isn't it? You know people can actually Manage and function really well with quite unstructured routines, but in effect that is their routine, you know And I think we underestimate sometimes by thinking a routine is about constant fixed state As opposed to this idea of the flow between them and understanding that which is fascinating Definitely one of the things that I find I found hard about diagnosis is I find sometimes when I tell people who I've known For a long time and they can be quite dismissive and go well that's obviously wrong because They know me and they've known me for a long time and they'll say but you're not like this and you're not like this Because people have this really, you know that a they have a view of what autism is like But b they have a view of what I'm like because of how I present myself to the world So and I think that's something people don't necessarily understand is how hard work it is just to be normal like when when You know the whole world is this massive kind of calculation the whole time and I'm always kind of you know 10 steps ahead in a conversation trying to understand what I'm meant to be doing and how and what this body language means and stuff And I'm more aware of the fact I'm doing that now But it is really tiring and I think yeah people don't get that actually that's complicated for me because I've worked really hard all my life where it's a not look for does that make sense? And I think the key thing there is what you're saying what I'm meant to be doing It's almost like you know that there's a perception or there's an expectation perhaps even that Individuals have to play a part You know and and somebody else is imposing the role on them saying this is the role you've got to play and actually I think Talking about your interactions with people you've known a long time You know about that to me is also about education and knowledge, you know a lot of people who are Very experienced and perhaps have a you know perhaps a high academic profile or whatever You know don't necessarily understand what autism means, you know, and I think people still learn through Misconception a lot. Yeah. Yeah, and the other side. This is obviously I haven't suddenly become a mathematical genius, which is Yes Well, it's fantastic and I learn so much Thank you All right