 What is it like to discover your autistic when you're in your 30s? I'm going to talk to you today about my experience of that because I was diagnosed with autism age 35 and it was something that kind of blew my mind if I'm perfectly honest. So what is it like to be diagnosed with autism at that stage in life? Okay for one thing it was a massive relief because it made so much sense of so many of the things I was really really struggling with up to that point. It made me suddenly understand myself better and it helped me to find a kind of people, people who were like me and who identified with some of the issues I was facing. From a kind of practical and medical point of view it was also really important part for me in terms of me getting better because I was struggling really hard with anorexia and I was not making progress in inpatient care because I was being treated in a typical way and I was atypical because I was autistic and anorexic. As an aside I am now working with the Maudsley with a fantastic team to look at developing a new care pathway for adults with both anorexia and autism and it's very exciting. Yeah anyway that's a whole other thing but yeah so it was helpful it was helpful it helped me to get better because we started treating my anorexia differently and I suddenly was able to make progress which was fantastic. Yeah helped me make sense of myself but it was also a bit of a crushing blow if I'm honest and I've come more to accepting it now and I definitely have come over time to recognize the strength that come with autism so lots of the things that I've achieved in my life have not been in spite of autism but perhaps because of it so I'm kind of very very determined very very black and white like very kind of honest and straight talking which people have a lot of respectful most of the time sometimes they hate it but yeah there's lots of things about me which actually are you know linked I think can be quite closely linked with the autism diagnosis and some of those things I'm really grateful for. However when at the point at which you imagine I got this diagnosis I'm in inpatient care I'm really really poorly with anorexia really struggling with my PTSD at that point and like crippling anxiety and depression all sorts going on basically feeling not great but I always had this kind of imagining of what the future was going to look like and I was going to be this happy go lucky person who's reading a parties and was super sociable and suddenly all the things I'd found hard all my life would be things I would actively enjoy and seek out and then I got this diagnosis and I realized oh so the reason I don't like doing all those things isn't because I'm ill right now it's because of autism at least in part and that's not going to go away I'm not going to be able to eat my way out of being autistic that's slightly untrue a little bit because actually for me when I was really underweight then the kind of autism traits were heightened so like a starved brain mimics an autistic brain so like a starved autistic brain this is my theory just my theory but starved autistic brain is like you know like an autistic brain on steroids but sort of the opposite but whatever anyway you think you can get like super black and white and you know you become yeah much more like like yeah I'm not making a lot of sense aren't I okay so it was a blow because I realized I couldn't eat my way out of it basically so yeah I knew with a lot of the other issues you know I had to face my trauma and I needed to eat my way to a healthy weight I wasn't going to be able to eat my way out of the autism although eating and getting to a healthy weight did mean that I was more able to manage on a day to day basis so when I was really underweight for example uh so I find it really difficult to manage like noisy environments and being around lots of people and that sort of thing but I'm generally able in like day to day life to sort of mask that or manage it to a certain extent as long as I build in rests and breaks and stuff but when I was really underweight I just couldn't handle really any of that so um yeah I was I was not able to function anywhere near as normally I don't really like the word normal we're not meant to use it are we I wasn't able to like pass as neurotypical so easily let's say um and whilst I guess it's telling that whilst when I tell people who've known me a long time that I have autism they're often kind of a bit perplexed and say well you'd never know or you hide that well or something similar the people who had only known me for the duration of my illness and particularly when I was very underweight were like not at all surprised by the diagnosis like not in the slightest were not quite understanding why I had not pursued this avenue before okay so those were some of the things one of the things I found really hard about the label is that like autism's massive spectrum it's a spectrum and so I have done lots of work throughout my adult life with schools and organizations who work with people with autism and I have worked directly with some of those children and young people who are really heavily impacted by autism and I obviously am not like that and so it's hard for me to identify with the label because I kind of feel like I don't deserve it. It reminds me actually of when you are diagnosed as being anorexic and actually the anorexic voice in your head always thinks you're not doing this well enough and they say well you're not actually thin enough to be anorexic and that's kind of how you feel like how everything you are you feel like you're not thin enough and I feel like this I'm not autistic enough to be autistic which might sound strange but that's just how I feel and I'm just being honest about it however again I have found that being open and honest about it has been quite helpful because people think that the way that they see me is the way that I am and what people don't necessarily realise other than other people like me who are like oh yeah totally get this and we can share and that's great but what yeah people don't necessarily realise is how much hard work it takes me just to do normal every day so to be around you and to be normal in the way that you expect me to be and to be kind of happy and sociable and all those things which everyone else does with consumer ease every day takes a massive toll on me like I'm a huge ball of anxiety and often anger by the ends of days like that and the thing is that people only see the bit when you put your mask on and you're managing and that's all good what they don't see is the bit when you walk out at the end and you burst into tears or you have a complete kind of meltdown or whatever so people don't see that side of it they only see the bit that you choose to show and whose fault is that that's my fault because I choose to present in a certain way um and that's okay because that's what's socially acceptable and that's what helps you get through life but um people don't then know the other bit and so then when you say to them oh I've got a diagnosis of autism and they say uh well that doesn't seem very likely and then you're like yeah you didn't see the hours when I wasn't with you well yeah anyway so that's that's that's tricky it's a bit like in fairness so I also got diagnosed with I have so many labels don't you just one of these people who likes likes to collect labels so I also got a diagnosis of dyslexia when I was 19 and I was studying at Oxford University um again that felt quite an unlikely diagnosis at the time because I was at Oxford University but you know what you can be clever and dyslexic it is perfectly possible um and that again was a situation where I had masked really well um and I have managed it through life I mean when I look back on school there were certain things like I always used to transpose numbers and make silly mistakes and stuff but um it wasn't like particularly immediately apparent um but when I went to university then all my coping skills kind of got to a certain point and I literally like dropped off a cliff edge and failed um which perplexed everybody um and so yeah we did the um diagnosis and I came back as yeah quite autistic no quite quite dyslexic but had really really good coping strategies so again I'd been able to mask it so yeah the story of my life hiding stuff hmm so what is it like to be an adult with autism one of the great things has been since having a label I have learnt and it's taken time what are you doing buddy I've learnt to be a bit more forgiving of myself and to understand that some of the things I find hard there's a reason why I find them hard and actually I need to forgive myself that and I need to build in downtime and break times and I need to be a bit more demanding of the people around me in order to help them to help me so for me there's been a couple of big revelations around this one has been like when I talk to people at events I'm working at for example and I might say I'm going to find it really hard to you know do the whole day without a break so I might need to leave at lunch time or can I eat my lunch somewhere separately or you know that kind of thing and I basically say I'm autistic so please can you accommodate me in x way they are generally incredibly helpful I say generally no everyone I've asked has been helpful people don't know this about me unless I tell them so I have to ask but as long as I ask people are hugely hugely hugely helpful and the other thing is that like the mixture of like autism and anxiety and my fact the fact that I have like quite good social awareness means I often like really beat myself up over conversations that have happened and they've been maybe slightly socially inappropriate and I've realised that afterwards because I've been honest and just said what's in my head has come out of my mouth because that's how I am um but that's not how you should always be um in like to be so I'm really struggling with this what am I trying to say basically like most of us like understand like social codes of conduct and we're much better at not just saying without a filter what is in our head doesn't always come out of our mouths that for me is more of an issue I'm much more honest a lot of people like that about me occasionally it gets me in hot water anxiety means that I go away afterwards and I like then realise oh actually I've done my calculation and the social script for that wasn't that I should have said x I should have done something different beat myself up about it uh and we'll get really really anxious about it however more recently like really recently I've discovered that if I drop that person a line send them a text or something and say I'm incredibly sorry I'm replaying our conversation from earlier and I realised I said x I didn't mean any offense by it I'm autistic and sometimes I speak too honestly perhaps what I should have said was why um and I've done that a couple of times and you know what people have been brilliant generally speaking they've gone that's fine you didn't offend me at all um and um yeah other times they've gone no no thanks for clarifying it's it's not a problem and I'm glad to know that about you kind of thing basically what I'm learning I've learned this many times over with many different diagnoses is that talking and being honest with the people around me really helps it helps me and it helps them to help me too um and so yes being open and honest about it is a good thing um I will maybe talk about this more another time I I've been asked like a lot to talk about autism lately and sometimes I will mention it when I'm giving talks I'll mention that I'm autistic and quite often that's something that people pick up on and I feel like people want me to kind of like be a bit of a role model or be like an inspiration or something for other people who are autistic and I feel a little bit like I'm not ready for that role because I'm not really sure what it means for me yet but if you're watching this and you're autistic too or someone you care about is then I would love to hear your thoughts your comments what you would want to know more about because this is a new journey for me and I'm interested to learn more and I'm this is sort of really interested to link with other people who have an interest here too and let's learn together gosh I I know some of you say you like my rambly videos but I think this one like really took the biscuit didn't it so yeah well there we go autism autism buddy is still here by the way just in case you thought that he'd left he is where are you buddy say hi okay let's close the video with that cute shot of buddy say bye bye