Mental Health Affected by Late Diagnosis?! | Friday Q&A [CC]


I feel like I should just explain I’m not sure if you can see but yeah, I do have a massive bruise on my arm. It’s from a blood test. And yes, it did turn my arm green. Hey everyone it’s Katy and welcome back to my channel and welcome back to yet another Friday Q&A. This is where I take the questions that you guys have asked me and I answer them in a video. So let’s just dive straight into today’s questions. The first one that I received was, why are you so scared of space? Great one to start off with yeah, that’s a… That’s something you don’t know about me I am terrified of space and I feel like this question came about because I posted a photo on Instagram recently because I went to go and see the Tim Peake exhibition at the National Museum in Cardiff. His space shuttle was there and his space suit and I went to go and see it and it was actually a really awesome exhibition and I posted a photo on Instagram and in that post I said that I really enjoyed going to see all of this stuff despite the fact that I am really scared of space and then lots of questions came. I think I am scared of space but it’s more of just like a big discomfort around the whole thing like I don’t need to know why it works. I know that it’s there. I know that it’s keeping me alive. I know that it does its job. I don’t need to know why and I don’t need to investigate all of that you know, I think it’s just such an expansive intelligent amazing thing that I just want to appreciate it from afar like I’m like, you do it, you do you, you’re doing it great, you’re doing a great job. Umm, I don’t need to question it or know why. I don’t like anything to do with that. I don’t like the idea of not having gravity. I don’t like the idea of just like floating aimlessly. I don’t like the idea of being stuck in a space shuttle and being really claustrophobic. I don’t like the idea of like depressurisation and all of the risks. I don’t understand why anyone would want to put themselves in that situation like Mm. Do you live with your parents or do you live on your own? I live with my parents and that is something that I don’t think is gonna change anytime soon. Yeah, I’m living in the house that I grew up in and continue to grow up in. I moved here when I was three so all of my memories are in this home and leaving it is gonna be difficult for many reasons, but yeah, I have been thinking more and more about moving out. It’s just been something that’s been playing on my mind a bit more and it’s starting to be something that I I’m thinking about and I am I don’t know kind of thinking that I want at some point, you know, I am craving that independence a little bit more I’m craving that sort of lifestyle so I have been thinking about it more and more and yeah, it’s something that I’ve been talking to my parents about quite a lot so that’s quite a, quite a fitting question for my life at the moment. Favourite country that you have traveled solo to? I have not travelled solo many places to be honest. I’ve travelled to England solo and I’ve traveled to France solo. But that doesn’t really count because I wasn’t on my own I was just away from my family. I went with my school so it was the first kind of solo travel that I did but I was still with people so I am counting that in this question because it did feel like I was on my own for most of that trip. Yeah, I’ve been to England by myself and come back alive I’ve traveled there solo, you know but that’s not really a huge adventure because it’s just over the Severn bridge which is no longer called the Severn bridge and that really annoys me but never mind. I did enjoy France. I went to Paris. I did enjoy it. It’s a beautiful place beautiful city. But I was really ill I was very homesick. I slammed my finger in a door. I didn’t really eat anything I didn’t really get to enjoy a lot of it because I was feeling so ill. So I have like mixed memories about it, and I’m hoping to do more solo travel this year. So hopefully that will change and create more good memories of solo travel because I haven’t done a lot of it, and I want to do more. How did you come up with your pyjama designs? So yeah, if you haven’t seen I’ve designed a full range of autism awareness pyjamas, which I spoke about a little while ago, a couple of weeks ago I think it was if you haven’t seen that video I will link it up here for you guys and the Weird Triangle website where you can get all of the items from the invisible i range it’s always in the description box. You can get this t-shirt there as well shameless bit of promo there. But yeah, the designs for the pyjamas came really really quickly like I said in the video we wanted to do a pyjama range I really wanted to do a pyjama range, but we had sort of scheduled it for like October/November time of this year. But we started to come up with a couple of designs and we just realised that we could release them much earlier than we’d expected so we decided that we were going to release them at the beginning of February and then we just started to mock things up. The first design that I came up with and that we mocked up and that we kind of completed was the Eat Stim Sleep Repeat. This came very quickly. I’d actually thought of this design a couple of months ago but we put it on the back burner because we thought it would be better for a pyjama range as opposed to a like normal t-shirt so we brought that design back up and actually mocked it up and finished it and it turned out amazing. Then I knew that I wanted to go on to something with shutting down or shutdowns because we hadn’t addressed this side of things in the range at all. We hadn’t done any kind of subtle nod to shutdowns, so I wanted to do something that could be related to pyjamas and shutting down before you go to bed, but also shutting down autistic shutdown style, so this one we mocked up and we were actually just gonna do the text “shutting down dot dot dot” but then I thought it just looked a little bit plain and there wasn’t a lot to it so then we decided to add some kind of image to it. We were gonna do like a buffering ring but we thought that maybe that wouldn’t get the point across as much so we decided to finalise it with a power bar and then we coloured it in blue just to add a bit of colour, and a bit of oomph to it and that was really that one done and then the hardest one definitely to sort out was the reasons why I can’t sleep because we knew that we wanted to release three pyjama designs and this one we had to really think about and again, it came from myself and Craig who we were chatting about things and we both were just randomly talking about our sleeping patterns and how neither of us can sleep at the moment and it kind of sparked into this sort of “the reasons why we can’t sleep” and then I realised oh we could do something about insomnia and sleep difficulties with the autistic community because it’s really common and that’s how that one came about really and that was a very collaborative design that was definitely us going back and forth with ideas and designs and colours and stuff like that. Whereas the other two I kind of said, Oh, I’d like to do this or I’d like a design like this and then we mocked it up but the last one the Reasons Why I Can’t Sleep is definitely more of a why don’t we try this? or let’s do it in this colour or in this font and oh we can put this and it was much more like back and forth collaborative so that was definitely the hardest one to get right, but I love them all. Do you think late diagnosis has an effect on mental health? Absolutely. I think it’s probably the main reason why late diagnosis is such a difficult thing because it has an effect on your mental health and sometimes people don’t really understand why that is but in my experience and from what I know from other people’s experience having a reason why you do certain things and you can kind of think Oh, I’m reacting in this way because I’m autistic or I am doing this because I’m autistic or I’m like this because I’m autistic. Having that to fall back on can help you not beat yourself up so much because you have a reason for it you know that this is something that is a legitimate thing that other people experience, you are part of a community and you’re not alone but when you don’t have that reason to fall back on and you’re getting to the point where you’re becoming self-aware so when you reach like between the ages of like 10 and like you know infinity and you’re becoming like more aware of yourself and more aware of other people and you don’t have those reasons to fall back on you can start to beat yourself up and really become self conscious and become your own worst enemy because all the reactions that you have you’re thinking why am I reacting like this? Nobody else does this. What’s wrong with me? I’m stupid. I’m crazy. I’m too sensitive and you start to feel like you’re the reason for it. You’re kind of gaslighting yourself. You’re kind of thinking why am I the wrong thing here? What is wrong with me? And you start to beat yourself up. You become really self-conscious you become… you kind of get to the point where you just kind of don’t like yourself and you beat yourself up and you kind of… You’re hard on yourself and then once you get that reason and that like light bulb ahhhh kind of moment of being like oh actually, I’m autistic and these are the reasons why I do all these things by that point a lot of damage has already been done to your self-esteem and you kind of have to start from scratch and build yourself up in back into a person who you know cares for yourself that you you know, you like yourself and that you give yourself the credit that you deserve. But a lot of the time that’s very difficult for people who’ve already been through years and years and years and years of self-loathing and self-hate. So it is a very difficult thing and late diagnosis although the diagnosis in itself solves a lot of problems and may relieve a lot of tension and can be a whole new lease of life probably at that point a lot of damage has already been done mentally to that person because of the experiences that they’ve gone through without having that label to fall back on. I kind of feel like there’s like a sweet spot where it’s really really healthy to be diagnosed. I don’t know what that is. Don’t ask me maybe we can have a discussion about this in the comment section, but I do feel like really really early diagnosis can have some negative effects as well because you know you might be discriminated against from a very early age and it’s a label that often children don’t want because being different as a child is never good. I’m happy that in my childhood I didn’t know the reasons why I did this and felt like this and had these kinds of you know, actions and feelings and thoughts. I’m kind of glad that I didn’t do that and I’m glad that other people didn’t know that because I feel like I would have been treated differently and I maybe wouldn’t have had the opportunities that I did as a child maybe because people were scared of the label of autism and that I would have been treated differently to all the other children. So I’m glad about that but I also wanted… I wish I’d been diagnosed earlier so I feel like there’s this kind of like sweet spot where you have gone through some of your childhood without feeling discriminated against or really kind of treated differently but you’re also not going through so much of life not knowing and beating yourself up and suffering the mental health consequences from that I feel there’s a good zone but I don’t know what that is. And the final question for today is a big deep one and so a good one to end on, are you religious? I get this question a lot and I don’t think I’ve ever really fully answered this. I feel like I get this a lot because I talk about religion a lot without actually disclosing my religious beliefs if I have any and you guys know that like I have a huge interest in religion I studied it in college. It’s just one of my favourite things to learn about. I’m very passionate about it I’m just, I could listen to people talk about religion all day long. But despite this I do not think of myself as religious. I describe myself as spiritual. I would like to believe something but all religion to me there is no one religion that I feel like I fit into completely so I just kind of think of myself as spiritual and that is because I take different teachings from different religion or I take the teachings that most slash all religions abide by and I put them into my own life, but I don’t do them for god or a divine being I do them for myself to kind of improve my own life and the lives of people around me because that is what religion is all about at the end of the day, I feel it’s about bettering yourself making sure that you’re living the best possible ability, but it’s just who you’re doing that for are you doing that for yourself? are you doing it to achieve enlightenment, are you doing it to you know, get to heaven, are you doing it for a god? You know, it’s just about who you’re doing it for and I am personally just doing it to better myself and to live as good a life as possible really um, that’s really really deep to leave it on but that’s where we’re gonna leave it! So there we have it. I hope you have enjoyed this Q&A Let me know by giving it a big thumbs up and keep those questions coming in the comment section. No topic is off-limits so literally ask me anything you fancy and I will answer them in upcoming Q&As. The more questions that we have the more Q&As that I can do you I know you love these videos and I really enjoy filming them as well so keep those questions coming. I hope you had a really really good day, and I will see you soon. Bye guys!

49 thoughts on “Mental Health Affected by Late Diagnosis?! | Friday Q&A [CC]

  1. Yes! Being diagnosed at 36 was such a relief. Looking back on my life, I think 12 years old would have been my personal ideal age for diagnosis. I would have avoided so much pain and misunderstanding. Thank you for this video ❤

  2. I love the subject of space even as a special interest, but once I've thought of something that is inconceivable like the foreverness of it, it can risk sending me in to meltdown… some double edged sword!

  3. I'd say a good time to be diagnosed is around 8-10. Like you said at that age kids start to become conscious of themselves and others around them. They're also close to becoming teenagers and they'll start to care about what others think about them. But more than anything it's important that they know why they're different and that it's completely ok to be different!

  4. I got diagnosed at the age of 51 with A.S.D and I did know I felt different at school it only happened much later at the age of51. I never questioned why people treated me different but always thought it was due to my Northern accent as I moved from Ashington to London. I also struggled at school because of my learning disability and I was much slower than other pupils. I never sat exams at exam school as I was taken out of school for two years as they said that because I have epilepsy I wouldn't cope with the stress of studying for exams. I went to an (epilepsy) boarding school for a year but did not take any exams. I have epilepsy which I had from childhood and had to attend the child guidance clinic but never knew why I had to attend. I find getting a late diagnose of autism at 51 and not having any post autism diagnostic support has affected me a great deal both my mental and physical health has deteriorated. I am getting support therapy based group work for social skills and anxiety management but it was a great struggle to obtain this help as it was only when my mental health reached rock bottom where I asked for help from the mental health outpatient clinic where I was referred (by my request to the Asperger's service). It is sad that I had to struggle on my own and have to wait until my mental health was at my lowest before I was offered help.

  5. Hello Katy, thank you for the subject of late diagnosis. I got diagnosed recently at the age of 50 and boy (or girl) did that bring up a huge lightbulb. All the things that i blamend myself of not being able to do what seemed normal for people, like starting or keeping relations, i can now put in the right context. I describe it like all the puzzle pieces that fall into place, one after the other, in a huge mind storm. I'm really enjoying this experience and knowing from that moment that i'm not weird or crazy (at least not more than any other person) and most of all that I'M NOT ALONE! From now on i can drop the mask i have been wearing for so many years and start being myself. Thank you for this great series of vlog's, they really are a great support for me. Keep up the good work.

  6. When you spoke about the effects of late diagnosis on mental health, that really resonated with me. I was someone who experienced the self loathing you were talking about for a long time and it was a great relief when I discovered I was on the spectrum and wasn't just some weirdo. Lol

  7. I was diagnosed at around 25 years old and I wish I had been diagnosed earlier, like you were saying, around 8-10 years old. I’m not a fan of space either but I just don’t think about it much. I find learning about space fascinating but you’re reminding me of things I don’t think I like or wouldn’t like about space, which is pretty much everything you said haha. Saving up for a pair of pjs from your line!!! Can’t wait!!

  8. idk how my life would have turned out without getting my diagnosis as an adult, but I do think its possible I would have experienced less due to having preconceived notions of what we typically struggle with then limiting myself based off of that… Of course the flip side is I would have had more support… which means I could have actually progressed passed some of the challenges I now deal with…. Guess I'll be running my life through my head today to see what it could have been like lolz

  9. I got my diagnosis at 20, and I think I would not be here anymore if I did not get diagnosed and I think I wouldve lost myself in depression. Im glad Im autistic and not 'crazy'.

  10. Thanks for answering my religion question! 😀 I was just curious since you do talk about religion a lot. I think I'm in the same boat as you. No one religion really fits with me completely so I kind of pick and choose different things from different belief systems.

  11. I'm not autistic, I'm schizotypal but it presents similarly to autism in some ways and getting my diagnosis meant I stopped blaming myself for being weird. It was pretty liberating. All the embarrassing moments of my past, I just look back and go, "eh, not my fault".

  12. What are your views on assistance dogs for mental health/autism? Do you think you would benefit from one?🙂🐕🐾

  13. Yeah, at about 8-10 yrs old would have been great. I am self diagnosed right now, but considering going for the official diagnosis. I am 20 and struggled since i was 12 with suicidal thoughts, self-destructive tendencies (unsafe sex, usually of dubious consent, drinking until i blacked out and self-harm) depression, anxiety and loneliness stemming from my inability to communicate. I was a mess and the world was chaos and i didnt understand why only i couldnt cope with it.

  14. Please do more sensory on the clothes like a meltdown could literally have colour melting on something. Or like hear no evil type see no evil type thing but its to do with autism hypersensitivty and blocking out things

  15. Glad you enjoyed he Tim Peak exhibition. You know, I have noticed that a lot of and even encountered adults on the autistic spectrum with a late diagnosis, around their 30’s, 40’s and 50’s. How long ago was your late diagnosis?

  16. Hi Katy. 🙋 I did a special phone call yesterday. I'm gonna be tested for Asperger Autism. The appointment is in May. I'm SO SO excited! My question to you is: What did you think and how did you feel after being diagnosed with Autism?? Has your life became different or has anything changed completely? LG from Germany 😘

  17. I know 39 was a bit late! I agree it would have been hard real young too, having a label and everyone knowing and stigma and all that.

  18. What do you do about paranoia? Like when you think there might be other people mad at you, because of random things that they do.

  19. I'm 40 now, and I'm just on the verge of getting a finalized diagnosis (again, after being previously diagnosed as a kid, then having that diagnosis disputed by several subsequent therapists). To be honest, it does make me angry, because I think if I did have this, I wouldn't have had a lot of the problems I've had. On the other hand, I'm hoping that there's some way I can leverage this (like trying to convince people that my special interests are things that can be encouraged and leveraged rather than addictions and obsessions to be afraid of).

  20. Do you drive? I have my license, but I do not (at least at the moment) for various reasons…I have OCD, ADD, major depressive disorder, and I’ve recently been told I have some symptoms of being on the spectrum.

  21. I found your discussion of a late diagnosis extremely interesting. At 36, seeking a diagnosis still, it would explain so very much and yet without a doctor backing up the idea… Am I just crazy? Am I just lazy? Am I just wrong somehow? I feel like all my life I haven't been able to explain my own differences to myself and this just feels like it would fit so well… But maybe I'm just making up excuses.

    My thoughts go round and round, it's maddening. 🤔

  22. Try to look up my channel where I talk about faith in Jesus <3 This is not where we need to do good things in order to go to Heaven, but as a believer we do good to proclaim Him as the truth to show we are the children of God. It helps me in heaps of situations. God bless! <3

  23. Sorry France was a bummer. Try Ireland. That’s my ancestor peoples. Here in USA we don’t really understand. Most folks would say aren’t you already in England.

  24. Space is scary. It’s the exact opposite of everything humans can live in. What’s your favorite Harry Potter book and or movie?

  25. I reckon the ''sweet spot'' varies from person to person. Mine would have probably been age 10, but it needs to be explained in a really sensitive and positive manner.

  26. I absolutely love outer space, oddly enough for many of the same reasons you stated for fearing it. That said, you're absolutely right to fear it. Black holes, stray rocks zooming around at high speeds, cosmic radiation, muscle deterioration from zero G environments, absolute zero temperatures, no air pressure meaning a large enough hole in your vessel's hull is guaranteed to suck you out of it, lack of objects to interact with means you have no control over your movement outside any vessels… outer space has so many ways it could kill you.

  27. I am almost 15, i am sitting my gcses, and i am trying to get a diagnosis of adhd and asd (both run in the family) and i have been in such a long waiting list for a year.

  28. I have this thing that I always do these twitching movements with my hand/fingers when I feel like I'm losing control or I'm wasting my time.. is that an autistic trait?

  29. When doing research into ASD I realised that I have a LOT OF autistic traits, so I was wondering if you had any advice on how I can tell my parents because I feel too awkward to bring it up in conversation and I'm worried about what their reaction would be

  30. I'm awaiting a diagnosis, appointments here covered by OHIP take many months…. before that, I thought I had borderline personality disorder, and my whole life, especially starting in my teens, I experienced even worse depression and anxiety.

    I am almost done university and I'm terrified of entering the work world. My jobs have been short, always stressful, and I majored in social work…. which is not helpful for work. I don't know what to do. I don't know how to make that work with my autism.

  31. I found out that I am on the spectrum when I was 31 and I agree about the damage a late diagnosis can do,I have comorbids of complex ptsd along with a anxiety disorder and I sometimes wonder about what if I found out that i am on the spectrum earlier,would I have got more help when I was younger and maybe some damage could of been prevented,it’s questions I ask myself a lot and do think I might of been a bit better if I knew earlier.

  32. I think the "sweet spot" is right at the beginning of puberty. (I can explain why some other time if people need that)
    as per religion, have you paid attention to Joseph Campbell before? or even better… Marshall Rosenberg!

  33. I was diagnosed at 23 and i feel it certainly impacted my mental health. I also feel like an early diagnosis would of been beneficial

  34. Hi Katy! I was wondering, how can you tell stimming and sensory seeking apart? Is there a difference? I have Tourette's, and have been trying to understand what it is that I'm doing. It seems to be tactile seeking, but I also find myself fidgeting, or pinching myself lightly, or pulling on skin in some situations – without necessarily feeling anxious, it's just something that feels right or that is hard to stop. The whole thing still confuses me a bit 😅

  35. I was diagnosed with HFA last year, with 19. Not really late, but late enough that I have developed anxiety and depression, because I sometimes could not do things that came easily to others. On the other hand, these thoughts have not just shut down once I was diagnosed. Now I worry that I may not be "autistic enough" (whatever that means), that I am "deceiving" people into believing I am autistic by exaggerating perfectly normal experiences. Kind of like Imposter Syndrome.

  36. does anyone know of any places in southern california or pheonix az area where I can get properly tested for ASD?

  37. If I focus on whats real or mot real. The world looks too real and scary and wierd, or sometimes it seems too not real like why do people go about their lives? Whats the real point of work, or talking work after work. That lives are all fake to take up time till we die. Then jobs and everything people strive for becomes pointless. Yuk. Then you just need the world turned off. So I hate thinking about reality. Which of course now I am. So like your videos, gonna go put some music on and clean the house a bit.

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