I am 38 and have just gotten a late diagnosis of Autism. I was diagnosed with Social Anxiety as a teenager but nothing ever helped it and it has only gotten worse with age. Only now do I understand how my anxiety is linked to my masking and while it is a relief to understand myself better I don't really know how to "unmask" yet. I've been playing the part for so long I'm not sure if I even know who I am. While I do not like phone calls or live conversations I do enjoy communicating through the written word. It is the only way I have ever been able to truly communicate and connect with anyone. If anyone here can relate to that I wouldn't mind having a few penpals that can relate to my situation.
Dang. I was made out to be a coward/weak because I chose to write my feelings vs "just talking about them". Writing things out has always been easier for me, my entire life, and I'm 32 now.
I (49F) was diagnosed last year, in November of 2022... At first there was a great relief, like a weight lifted from my shoulders. I finally had the answers to so many questions that have plagued me my whole life. Then I got really angry for a couple of months , followed by grief: "If I had only know..." I went through the 5 stages of grief; I mourned for my inner child; for the life that could have been, but now can never be. Not a single psychiatrist (4 over 22yrs) ever mentioned it to me. They decided I was Bipolar II, and medicated me accordingly. I even did several stints in psychiatric hospitals. Today, though, I am happier than I have been in years!
I always say, having supportive people in younger years makes all the difference. I didn't. I was diagnosed at 45. I am 56 now and lonely. Always been alone.
I thought to make you smile - my diagnosis came only three weeks ago. I am 85 years old and suddenly all the heaviness of decades of puzzlement and negative experience dropped off. In my opinion, to have a diagnosis is marvellous. And I am rejoicing, however late in the day.
Brilliant. I tell people that it always worth pursuing a professional diagnosis as it may be beneficial in the long run...and at 85, you have confirmed my statement! 👍🏼
@@cynthiastogden7000 I also self-diagnosed at 70. I don't think I'll ever find anyone to diagnose me, so I'm trusting myself. It certainly changed my view of my entire life and all relationships.
Hi. I self diagnosed 1 year ago and told a very few friend and acquaintances. After letting my doctor know I self identify as autistic and with some discussion she added ASD to my medical chart. It was a relief to have this type of support from my doctor. It finally felt safe to tell my family who I feared would dismiss my truth but less likely to dismiss a doctors acknowledgement. I’m turning 70 next month and am so grateful in understanding my challenging life path and more deeply accepting and honouring myself. I hope you come to find more peace in your life. Peace to all persons with autism and other forms of neurodivergence.
I have a handful of movies that I can play to put my brain into standby. Stargate is really effective. I usually don't even make it past the opening credits. I actually played the Spanish version the other night and didn't even know it. My wife woke up in the middle of the night and heard it playing.
Neurotypical people don't get that what brings us to a diagnostics as adults is precisely that it gets harder to deal with all this, and we are suffering more than before. Keep it up, man.. it's nice to hear a working class down-to-earth voice speaking about these issues.
This is so true. I hit an impenetrable wall in my late 40's and thought for sure I was going off the deep end for good. I sought answers when meltdowns went from a few per year to 1-2 per week.
@@jonkas4542 oh, but they often can. The problem is that they think we are just that: people who "think different". My experience is more like being trapped inside a box than anything.
I'm 50 and was diagnosed last year. Nothing has changed. My work's HR is useless, my family says I'm fine and labels are meaningless, and I don't even know who I am without the role I play. I'm glad that it's official but I'm still stressed and still tired. *sigh* Thank you for sharing your perspective.
That 'now what'feeling lived with me for s long time. Now I realised my version of 'now what' was to take better care of me and make myself important for once. Never realised up to that point how much I'd been someone for everyone else...except me 👍🏻
I am 70 years old and have only had a gradual realisation of this explanation of my life during the last 5 years. I'm glad that young people now have more understanding and help.
@@binathere2574I’m 39 and just came to grips with an autism diagnosis a year ago. I look back and cringe when I see how it affected in a negative way. Worse yet is every relationship I created and maintained was due to masking and my ability to mask is lessening
We really don’t, though😅. I was diagnosed 4 and a half years ago at 35 and so far have got no help or accommodations though I’ve been constantly asking for them. I’m I. The states so we’re very behind.
I am 61. My “official” diagnosis was me asking my psych, am I autistic? He said, yes autistic and adhd. Facepalm!! Oooooohhh!! The hardest thing now is no understanding/acceptance from my son (who has a son with non-verbal autism) I get you.
"The older I get, the easier it is to break through my resilience wall" Freaking a... this is like the exact wording I've been needing to use that I couldn't think of on my own. Always told I'm so resilient, and realizing lately - especially in work - that I am unable to handle less bullshit and stress than before. That I've been living "fake it till you make it" all my life and faking it is just becoming too heavy a burden nowadays.
Yep, I know that feeling. I could always just keep going through it and deal with burning out on my own time. As much as getting older each day helps with understanding my Autism, the resilience isn't what it used to be.
I hear you. When I was a kid, autism wasn’t a thing, then only boys had it, then I was too old to be diagnosed or considered. I got diagnosed at 52. I’d grown up, had a terrible time with work, gotten married, had a terrible divorce, wasn’t able to bond properly with my kids, so much! So much pain could have been avoided if I had known. So many paths unwalked because I didn’t know. At first it was a relief to find out, so many questions answered. Now it’s just depressing.
I know it isn't a comfort at all, but I get so many emails from people like yourself who have followed the same path and results. A lot more needs to be done to bring this to light
Hang in there - I just got diagnosed at 58 and had a similar work & divorce path. I am actually embracing the positive side - my brain can do unique things that I can harness for good. I'm learning (slowly) how to manage the downside (emotional regulation & vagus nerve resets) and embrace the creative and analytical side in new ways that make me grateful for my unique brain. I still have bad days, but I've hired an Asperger's coach and I'm starting to share my diagnosis and ask for help and getting more comfortable with that. Hang in there - you're not alone.
I'm 52. I have SO MANY memories growing up as a kid and into my teens of being socially awkward. Watching other kids have 'fun'. Sitting at the back of the bus and watch the noisy kids blabber out loud and stare at each other. I don't have an official diagnosis of anything but I know I'm wired differently. I perform my job very well. But avoid company parties. Social anxiety is practically painful while I try to absorb and digest all the noisy information around me.
I got diagnosed at 43. Honestly, when I received the diagnosis in the mail I started crying. I finally knew there was a reason for who I am, and it has a name! My whole life has been one giant struggle. I've always known I was different in a bad way because I'd say the wrong thing, ask the wrong thing, do the wrong thing, get beat up, get ignored, get overlooked, and a dozen other things and get in trouble for it. I've had trouble keeping jobs, keeping relationships, keeping independent to finance my own life. I've had constant anxiety about anything and everything and an unending inner monologue analyzing anything and everything. Everyone has given me hell about my sensitivity to light and noise. My wife gets angry with me for my autistic traits sometimes. I guess she mistakes an explanation for an excuse. I'm really tired of wearing the mask to make everyone else comfortable. What about my comfort? And to compund things, I'm also bipolar type 1. Yay me!
I'm 63, and can say it's pretty much ruined many aspects of my life. Not the autism itself, but the lack of support, and the not knowing what the hell was wrong with me, the inability to fit in, and the lifelong difficulty with employment. I'm with you on the fear of parking, and the fear of being late (and a whole lot of other things!)
This is interesting . It sounds like how I talk myself into quitting almost every job I have had . At 60 never diagnosed . I found some issues I have says bad in my life after looking to understand autism, so I could better understand why my grandson is autistic and maybe him ... Now I need to understand myself.
@@kevinmiller8265 There's so much information online. It's a real eye-opener. I don't think autism was picked up in schools at all when you and I were children, so there's a whole generation of us out there who have struggled all through life without a clue as to why.
This is the most meaningful video about autism I've watched, and I've watched hours of them. I've tried to tell the few friends/family I had and they either pushed back angrily or disappeared. The downside of being (relatively) good at masking. I don't know what the new landscape will hold, but at least I am coming to understand who I am instead of trying to figure out how others want me to be.
“Missed opportunities” This is a major one that really does my mind in if I think about it too long. Recently diagnosed at 39 and I look back on a life of masking and confusion .. a diagnosis answers a few questions but raises a few more. But yes, the things that I’ve missed out on are enormous .. I’m honestly not even sure what a “good and balanced” life looks like for someone with autism …? I spend so much time and energy recharging that I barely have energy left to do much else
Same. After I am done with what I need to do for everything else...I am spent. So spend free time recharging, hoping to have enough left for the week ahead to do it all again.
Hey it’s not too late. I am 62 and looking back, my 30s to my 50s were the best part of my life. Be strong and have hope. I’ve been aware of being on the spectrum since I was very young but I struggled and achieved a reasonable level of functionality. But people often told me that I was my worst enemy! l didn’t get it. I do now. Like they say ‘wisdom is the comb that life gives you when you are bald’. Many regrets but it could have been worse. All the best.
Omg you are literally describing my reality!! Down to the emergency exits, parking, everything. You have captured this so perfectly. I'm 35 and its EXHAUSTING.
Came here to say this. Until it was said in this video I had forgotten this was a thing, it was just something I did without even noticing, but have always wondered why no one else ever took the time to worry about these things.
I understand this wholeheartedly and it really isn't pleasant to admit that. I have never really connected with autistic groups. I was even pretty wary of the group my psychologist formed of her adult-diagnosed autistic clients for the longest time. It took a while but eventually I did start to attend the group meets and it did change my opinion finding that they were all of that similar mindset. That we don't fit in with the early-diagnostic crowd and it gets incredibly lonely trying to find neurotypical people to indulge in our interests on our terms with. Even in this group with something like 12 active members most of us don't share similar interests, but it at least allows us a space where we can discuss topics we find interesting during the groups, and we've started arranging hikes and other outings together. The focus being so often on young people and early detection is good in the long run but it also has the unfortunate side effect of making anyone diagnosed as an adult feel like they're just damaged goods. "Oops, we missed that one, ah well, it'll sort itself out."
Sounds like a decent group if you're getting out on hikes...although with my bad knee, I can't even do stairs without pain, I really should go to the docs about it now. It really does feel like the late crowd are considered as damaged goods, past the point of no return etc, and we get swept to one side. It's not nice, but I live the reality of it. So when people disagree ans say it isn't so, they forget I share genuine experience.
@@AdultwithAutism I'm hoping you're getting some of the perks of a group using this channel as an avenue for your thoughts at least. You have some dedicated watchers for sure and at the very least that has to take the edge off of feeling alone at times. You've always got that in your pocket for proof, even if only to yourself.
I went to the autism show, NEC. Blew me away listening to the speakers, half of which had autism. Although l was diagnosed with adhd it is the fall-out from school undiagnosed & with dyspraxia, dyscalcia along came the chronic OCD from about seven to twenty two. One long struggle, think have read enough about the subject without waiting for any (more) medication. Just getting on with life...
@@dennisyoung4631 And what are the trivialities that you find to not be trivial? My comment is replying to and agreeing with autisticadult referring to the trivialities of naming conventions and fork placement versus things that have a MASSIVE impact on the lives of many autistics. And yes, I am one of the autistics that views the naming conventions to be so incredibly trivial by comparison. I've NEVER had the word order of anything in a naming designation provoke such an intense anxiety in me it was absolutely everything I could do to decide to continue to exist for another second at a time.
Really glad to hear you address the issue of resilience. I'm 68 and the diagnosis is in process. But oh my yes, so many things I have pushed myself through in this long life of coping with trying to be like everyone else and forcing myself to do things because that's what 'normal' people do. The cost to my psyche has been enormous! People talk about strength and resilience as though they are infinite and they bloody well are not!
Absolutely! There is a limit, and what people don't realise is...we can feel the limit! Feel our resource draining, feel the difficulty in recharging each and everytime.
@@AutomaticDuck300same here ..I’m 39 and recently diagnosed and I realize every relationship I’ve built and maintained was due to my ability to mask. I don’t think they even know who I really am - I don’t think I even know
I'm in Texas, I wasn't diagnosed until I was in my early '50s. When I was fighting to get anyone to even talk to me - at least inside the county's health system, "The only deal with children with autism!" -- I AM a child with autism! I just managed to keep from dying for 50 some odd years! I haven't tried a group of autistic people to interact with, I am sure it can be challenging, and you make a really good point that late diagnosed means you didn't get any special consideration coming through schools and such! Good video. A lot to think about!
I found in my 50's a support group of only autistic people and it has been invaluable, I cannot recommend it enough. We are all so different but instantly comfortable with each other.
thanks for your comment Thoughtstorms_Keith i'm also late diagnosis at 50, yet to find a group or a psych i can trust, mental health services spat me out, family think i'm just lazy and playing for sympathy. i did some inner child work alone with no therapist and its so hard. i hated myself so thoroughly for not doing well with people.
@@ravenspace your last sentence was the story of my life until about 28 years ago, about age 32. At that age, i resolved to stop hating myself. It seemed to me that it was hurting only the people i'd never want to hurt. And doing me no good. I know i make it sound like it was easy, but it did come at the end of more than 18 years of struggle. I still haven't managed loving myself but the constant self-hatred is truly corrosive and i don't miss it. I hope you find help of one kind or another!
I was just diagnosed at the beginning of this year at 41. Thank you for this series, I think it is important. It's not the flowery bits and it's not just the extreme worst cases. It's the thousand needles and arm and gut punches you get all through every day of life when your undiagnosed for decades. When you've developed masks for every occasion, and have enough practice to make new ones on the fly for new situations. When you've done it so much that you know you can't take people with you from one environment to another because they won't recognize you there. When you've been pointing out symptoms that later got you diagnosed, and being gaslit or attacked for decades for it before being diagnosed because you should just suck it up. Being belittled and berated for the social mistakes you didn't intend because your body language and demeanor are different, so no one believes you when you try to apologize. Wanting to commune with small groups or individuals to learn new coping strategies and get new ideas, but you need the "move your hand like this" and "hold the tool like that" kind of explanations that cannot be communicated through words, text, or pictures properly. All the groups in my area are all for parents of autistic children. Where does it go from here? I know that problem...
I hear you Randall, I really do. In a world where we are told to be all accepting of all things...yet we aren't accepted over something we haven't made up, but also something out of our control. Sometimes, even just 5 minutes over a cup of coffee to explain things from my perspective would be something amazing for me, but the reality is people aren't interested, so it's a waste of their 5 minutes. As much as I doubt it'll change in my lifetime, I still wanted to put the video out there to be a torn in the side of people who make out there aren't obstacles dedicated to late diagnosis.
@@AdultwithAutismI got to say that this video is also validating for people like us. Because you hear that you are "complicated" you just have to let things go, relax, be yourself. And when you do... you are too emotional, stressing over nothing, you are too prepared and it feels unnatural. There is no fucking right way! You shouldnt care about what people think. You are toxic independent, you never ask for help and when you do and nobody answers your call you feel like an idiot. 😭😭 Your burned out but its on you because you are "too invested" you have to work on being good enough but you must remember to deliver quality care. 😪😴😭 I find this video very reasuring and soothing. Thank you!
47 … life fell apart again. made a couple good friends though. One is is high-functioning ASD & another who is resistant to my self-diagnosis but is helping me as a second set of eyes while I self diagnose. Had to cut most family and friends off as I go through this. Just learning about and that I am AUDHD/PDA/monotropism/dyspraxia CPTSD/PTSD betrayal trauma and the mastery of too many masks. And I FEEL every bit of your experience … viscerally. Thank you for being a rational, relatable voice in my head!!!
There is something called post diagnosis grief and it should be more spoken about.. it's dangerous to reanalyse your entire life, each decision and the what if.. the what if is the worst because even the good decisions get to be questioned. I am still ahead of my and my daughter's diagnosis, but you made a really good point there, parents now have a bunch of support and if willing to educate themselves then can be prepared how to guide neurodivergent child through life. I always knew I am different, like I haven't read a manual that everyone else did. I couldn't "just find friends" as I was told to, just understand the social aspects, just not be so sensitive, just get over things and the list goes on.. however my life goes by the book according to social norms, school, uni, work, marriage, child... and it's challenging being "different" to a "different" child, but only because of my daughter being during diagnosis, I have started to put a name to the difference, that I am not just making this up and this journey will be bumpy but at least thanks to finding out more about autism, I know how to help myself. Thanks for the video, it's an important one.
I've never heard of post diagnosis grief, but it's something I'll have a look into. It would be dangerous to place your future in the hands of a theoretical past I agree, it's more important to adjust accordingly with facts from each day moving forward. I laughed when I read 'just find friends' as I know exactly what you mean. Like when people go on holiday and they just start talking to others and end up holidaying with them every year after...it blows my mind how that happens.
I just found this video. I'm 68, diagnosed at 65 and really feeling the grief. I have 3 neuro-typical children - sometimes I wonder if I had them so I could have some friends. Well, they grew up and away but had their own challenges due to being raised by a mom who wanted them to be her friends. There was no discipline or direction from me when there should have been. Lots of problems for them. Lots of regrets for me...
Sorry to hear you have the regrets. You'd be surprised how common this type of thing comes through into my emails. Not a comfort I know, but you're not the only one. Hope you're okay 👍🏻
I hear you. Being diagnosed last October age 56 was a relief in many ways, but then there's a whole lifetime of trying to do things I was incapable of doing. The constant sense of failure, going from one job to another and literally becoming an alcoholic just through the pressure of getting out the front door or using public transport. I'm never going to learn to drive. Just couldn't sit in a car with an instructor every week. And I would have loved to be a doctor but going to college was so traumatic I ended up unable to leave the house. So I'm angry that I've wasted my whole life. I might as well have just been flapping my arms until I could fly. Never gonna happen. God I tried so hard to do all those things everyone seems to manage so effortlessly. It's time to put myself first now, at this late stage, and go into a kind of recovery mode, or self-care, and stop trying to fly. I will be saying no a lot this year.
It's good to read that you're going to take control. Rather you take control now than carry on letting a world of societal expectation continue to affect you that doesn't fit your design. You cannot pour from an empty cup, you have to be okay first. Once that is achieved, then you can think about others, it cannot be done the other way around. No isn't a dirty word when it is about your wellbeing, it's the most empowering word you can use.
There are many of us in the same situation, looking back at the carnage and collateral damage, the wrecking ball of being undiagnosed, misdiagnosed or just not able to comply with the system because it is set up for NT and conformity. I am on the cusp of 60 and just realizing what this brain has been up against. My field of dreams has been covered by the ashes of dysfunction. That’s a reality that nobody in my life wants to unpack.
😢 I struggled, prediagnosis, like everyone else on here. But my Hardest years were postdoagnosed, when suddenly I was being severely presssured to catch up in conforming to social norms, every day all day, no let up until I closed my bedroom door at night. I took it for 4 years. Then I Demanded to live at a different place! It is a little easier here. But the social pressure to conform sneaks up on me here too. Ps. 2 months on, I am slowly learning I don't have to cave to pressure to socialize when I need to recharge. I even one day left a note taped to outside of my door, "Please do not knock on my door, I am resting, I am fine."
I appreciate your candor and detailing... I am 47 and just realized in the last week my own ASD as I'm trying to put together how someone with a degree and so much potential in life ended up living in a basement suite in a small town after having lost a job due to a meltdown (again), and now working part time in a fast food restaurant. I think the part that hit hardest was the feeling of losing resilience. People just don't get it. They say, well, look, you've done it before, you can do it again -but it gets harder to convince myself 'things will be different this time' and give things another go. I've dealt with social anxiety and depression/suicidal ideation for over 30 years and I'm just so incredibly tired. I've built, destroyed, and rebuilt again too many times to count in the last 3 years, let alone in the last decade. It makes me really angry, because it was so hard to do it in the first place and then it all just gets wiped out and you have to roll your boulder up the mountain again like Sisyphus... You get judged so harshly by people you know for just 'screwing things up', if you just managed your emotions better, keep your mouth shut, enjoy a 'team building event', or not express an intense loathing for forced participation in events like Secret Santa, you could've been so much further ahead. The only thing left I feel is pursuing my intellectual interests, getting it to writing or video, to at least 'show them' I'm not just an incompetent 'self sabotager'. Who knows after that. Every year I kick the suicide ball into the long grass and say, ok, try to make it to 20, to 30, to 35, at least to 40... It's my hope, that by working through this, I will at least be able to feel some sense of accomplishment by 50, which is in 18 months to the date... Apologies for the detail.
Don't apologise, I understand completely. If we could just focus on the work, we would be the most valuable assets to a company. Instead, you are not judged on your competence, you are judged on your network and social skill...and like you say, the 'joy' of forced fun that takes it's toll. It isn't just the event, it is the lead up to it year after year...it is like asking someone on a specific time each year to stand still so you can punch them in the face and there is nothing they can do about it. I am pretty sure they wouldn't be too fond of that either. It is painful to consistently do what is outside of our design, and even the nicest of people...we still have to mask for. Which builds resentment because if we were truly accepted, why do we still need to mask? It is tough, but look after yourself.
I feel your regret and pain. I am only recently realizing that I am legit autistic. I am in an ok place right now but feel like I am a push away from having to live with my parents or brother.
I feel your pain. Sometimes I wish there was something to turn the emotions off. Losing jobs because you melt down or inadvertently do something else wrong. For example I worked at a place that laser welded parts. The job was time consuming AF. So o made a die plate that held 144 of the little valve stems and created a nesting routine so it would do all 144 at once. What I did not know was the customer was being billed per time not per part. The job was supposed to take 6 hours per 1000 parts, I did 1000 plus in a bit over an hour. Fired. Another one was when I pointed out why a mat failed to press properly to a customer, told them we just installed the press platen and they need to be seasoned like a frying pan and the 3rd one will come out OK. Sure enough 3 4 5 OK. The boss was humiliated because he didn't know how to tell the customer why it failed. 🙄 Got a surprise drug test the next day, was clean. Two weeks later they let me go... reason. Did actions outside of job responsibilities, and do not fit the corporate expectations of duty. Asked exactly how and all they said was it was a "business decision" 😪💩😕
Accidentally found this video. I send you my deep support. I associate with everything you say. I come from eastern Europe where autism still doesn't exist! So my priorities are different. I strongly associate with you saying that we are wanting to put candles on a cake before the cake is baked. I often thought this way about many subjects. Not just autism. And I got diagnosed at the age of 29. And I am still expected to go on. At work, at home...
I was a nurse who became a stay at home mom when my children were young. Even as a trained nurse, I totally missed that my children and I are on the autism spectrum. And my mother and father, siblings, ex husbands. My whole world was full of autistic people and I just put it off that we were all a bit quirky. Thank God above that autism awareness and education are opening our eyes and hopefully our hearts.
I’m 53 and recently diagnosed with Autism spectrum disorder. I was blessed to meet a new counsellor I really clicked with, and she saw it right away! Her astute ability to dig deeper and really see under my masks, resulted in a diagnosis. This diagnosis freed me and I finally understood my whole life!!!! It was crazy!!! All of my life, I felt like I had been dropped off on the wrong planet. Yes I have regret and wish I could have had an early diagnosis, but now I can finally ‘get myself’ and adjust my life to what I need!
I got my diagnosis at 45. I wish I had it before. The feeling was, somehow, liberator. Just like you I had (and still have) serious problems with sociability. At 7 those problems were even bigger. But ASD level 1 (former Asperger) received an ICD only in 1994. Today I'm glad I know myself a little better. I allow myself, occasionally, to simply give up on things and people and not fell bad about it.
I think that is a personal victory once diagnosed, you feel validated in allowing yourself to make decisions that benefit you, decisions you may not have otherwise made 👍🏻
This is by far THE BEST description of how hard it is to get diagnosed and have autism as an adult!!!! And to hear that another autistic person also can't understand why it is so difficult for neurotypical people to accept talk of negative things, things that could be done better (especially when the same neurotypical persons are the ones talking about the need for improvements, innovation and so on), is SO soothing! Cuz I totally feel the same! And I can't for the love of god understand why it is so difficult for neurotypical people to just embrace talk about negative things as, at least for me personally, the only reason I talk about negative things is because I genuinely just want to make things better (but apparently neurotypical people really don't want that - or don't really care, or can't muster the energy or something - since they don't change negative things themselves despite them also talking about negative things a lot ..)!!
Thank you 👍🏻 And I'm the same. I want to talk the negative to stop it being negative anymore. If its flawed, let's fix it. If its a problem, let's solve it etc. It's to be done as a collective, not to sell anybody out. Its for a greater good surely!
Thank you so much for literally vocalising how I feel and my existence. Diagnosed at 51 with no prior knowledge or experience of autism other than "Rain man". I'm 2 years post diagnosis and still trying to figure everything out. Never felt so isolated.
Super relatable. At 41 if I told anyone (work, family, very few friends) it would only cause more distance and lack of understanding. I'm different. Okay fine. I hope someday to find real in-person neurodivergent friends, but until then (if it happens) there's some relief found in the online community. Btw, parking garages and parking in general stresses me out too. Like I won't go unless I have a plan and fully understand it. Can't afford the stress of flubbing up and feeling panicked.
I do the same thing. I have to know in advance what to expect and people sometimes get annoyed about it if others are involved. Also, the planning takes mental energy so I factor that in as well.
And Katie bar the door, if someone has parked in "my" spot where i usually park. If it's at work, I'm a mess for hours. If it's a store or other business, I'm just as likely to turn around and go home
HI Paul, very well said. I can completely relate to what you are saying. I was lucky, in an unlucky way, as I was diagnosed with ADHD at 12. A lot of my difference if you will were explained. The autism diagnoses sort of completed my profile. I also agree that when you start unmasking people wonder why now. They have no idea the life you have led. Just as a weird example. I was at Disneyland with my dearest friends and we went on a new Star Wars ride and I was so excited that my mask completely dropped. I was jumping around, hands flapping with complete and utter joy. After they said that they had never seen me so happy. Of course that is because I have masked myself for so long. Never wanting anyone to see the real me. Anyway a crude example, but you are so right about late diagnoses. Excellent video. Great series.
Hey Bryan, at least you enjoyed the ride! The closest I get to unmasking in public is when I'm alone in my car. I can sing my head off and make all kinds of musical noises that if heard by others, I'd no doubt be assessed for losing the plot.
@@AdultwithAutism I wonder about that. My family and closest friends do that all the time. I don't allow myself to do that in front of others, not even my family lol. Though I have been abused for no logical reason so caution is at the forefront of my mind.
I started singing a hymn in my car after the police demanded to see my driving licence (near an anti fracking demo) 6 years ago. They then served me with a section 136 (to detain me and try and get me sectioned), thankfully I knew to straightaway start acting "normally" and calmly, and the psychiatrist concluded I was not a danger to myself or the public and let me go immediately I was assessed several hours later. The police have a LONG way to go to accept people with autism who are engaged in direct action campaigns, using their autism to destablise them, hey the police even wrote to the DVLA saying they believed I had a medical condition after that incident, that affected my ability to drive, but autism is NOT a condition notifiable to the DVLA, though at one point they mistakenly indicated on literature that it was. I had broken no laws, but that does not stop the police misusing their powers to intimidate successful and persistent environmental campaigners such as myself. @@AdultwithAutism
“That mask you wear is burdensome the older you get”. What you were saying has been the story of my life, especially many of the difficult things you said towards the end of the video. Hearing you talk has been so helpful to have my life experience’s validated, and to grieve for all what could have been and what has been lost. Only now after 65 years am I beginning to come to terms with the acceptance of my completely misunderstood lifelong disability. Thank you for all the time and energy you put into sharing your life story. It is very worthwhile and so much appreciated.
I am 40, and I'm on a 2-3 year wait for a diagnosis of autism and ADHD. The more I listen to other autistic people ands those with ADHD, the more I am sure I have the conditions. As you said, things start making sense once you know why you are the way you are. I thank you for making this video, it is very informative. I really identify with what you say. I am going through the PIP process at the moment, as a I am the tribunal stage. I see no how, unless God does a miracle. My lack of support in the past, lack of special educational needs school, the fact I have at the age of 50 had I one job, etc has been (it feels) used to try to highlight my lack of need for PIP. I am currently in burnout, I've had to give up that employment, am mainly housebound, because of sensory overload, and do find everyday tasks hard or impossible. I am very isolated at the moment, and j have had 2 visitors to my home in 26 weeks. Is this 'normal'? It doesn’t appear so, and I hope this will be seen and taken seriously. I am all on my own, and people do not understand. I need to discover who i really am, but do not know how to. It is a big learning curve, with no instruction manual - I'm just glad that I have people like you, who understand. I feel more at home with you all.
I'm glad you can relate to the video. Your 'normal' is more normal for me than the other versions out there. I will do a future video on 'You've Always Managed...What's Changed?' mentality, and I hope it will be helpful too.
I am too going thru the exact same thing it's very isolating. October my relationship ended, I moved not sure how, did 3 months of school in 3 weeks so I can get student loans to survive. Take care of my special needs 6 year old boy. Could not get him to school on time potty train him and now he is staying with his dad cause I am totally burnt out and literally sick from trying to do everything I did and trying to be like a normal person. I couldn't even work the 13 hours a week and quit. So 12 weeks alone in this place no one visits and even if they did I wouldn't be able to be normal I'm just so burnt out and sad and lonely. I should be so happy, I'm out of a bad relationship, I'm living in the dorms at the golf course for only 100 which I struggle to pay. I can stay here through the year if I work here but hard to be around people I feel like an absolute alien. I just try and get through the day. Lost in my mind of negativity because I can't function. I'm lucky if I get one thing done but life today that's not good enough when we have so many responsibilities. Then to talk to people when I have appointments to try and get help and they just say I have to force myself and I just want to not think or be or exist because it's too hard sometimes.
I'm just finding your channel- it is so true! Many women received late diagnosis because our characteristics are different. Also being "high-fuctioning" is more difficult than otherwise. 😢
I'm on my third video from adults talking about their experiences with autism, especially late diagnosis, like your own, and I'm beginning to choke up. I'm listening while at work and trying not to look like I'm fighting getting teary-eyed. So much of this is me. So much of this, at 35 years old, is me almost to tee. I can't believe it. I've been inching closer and closer to the edge of losing my mind and throwing away everything out of sheer frustration, loathing, panic, loneliness, and depression because of still having exactly the same crippling inabilities since I was a child. I've never been able to break through to the other side and grow, to develop, to learn the things that have held me back for so insanely long. Especially when dealing with confrontation, I explode. We just hired a mid-40's man at my work that has a much more obvious level of it and I started noticing how similar my outbursts of frustration are to his own. I've just been better at hiding it over the years as I've learned to cope with... well, every type of method I've heard about so far. I do it all. I can't believe I never tried looking into this sooner. Not everything is exact, like eye contact (most of the time), or diet, but everything else is exactly what I've struggled with for my entire life. I haven't had a relationship or made a new friend in 12 years. I never understood how everybody around me at work gets along so genuinely and with such ease. The teasing, joking, flirting. I want all of that but have never, EVER understood it. Every attempt pushed people away. I'm so lonely and disconnected from being myself to everyone. Until now, it was always a combination of high social anxiety and depression. I'm calling my doctor tomorrow first-thing. I'm in such disbelief that I'm genuinely choked up.
@@AdultwithAutism I plan to, thank you so much for sharing. It was just an intense little while hearing all of the things I've struggled with being described so accurately by somebody else that understands. Thanks again!
I understand your pain man, and I'm sorry. I know it's rough, and I know the struggle of fighting what you are to show others what they want you to be. In the end I burned out and crashed. I was the homeless autistic man that people threw food at on the street. There is no compassion, there is no care. When you don't behave the way they want you to you are discarded and left to rot.
and if you don't find the same things funny that everybody else does, you're a miserable person with no sense of humour. I get exactly where you're coming from
Yea that’s great really …. It’s difficult to express yourself as to why people don’t get it I’m just one month diagnosed and I am 59 years now For me this news is phenomenal….. Good lord I am totally grateful to know that I am wonky by design…. I love me and I honestly believed to last month that ever single human had my wonderful abilities 🕊 Yikes I feel bad for the typically minded😢 Late or never I’m avoiding the normies in my family lol 😝 Rather live in harry potters world 🌎 I’m ok with anything now I know it’s me too now I’m happy to know both in real life society x Enjoy your self 🪐
Great video mate. I gave up trying to be what other ppl expected well before I got my diagnosis. I’ve been so much happier since I stopped trying to be something I’m not.
Good for you. Glad it's worked out. I'm still me, but a version for the benefit for others. I'd love a happy medium at a minimum...just not possible unfortunately 👍🏻
Oh wow, you have described my life, I am currently going through diagnosis at age 52 and still trying to find my path, years of missed opportunities and fear, lack of understanding and getting situations wrong, not really wanting to bother with anyone and being forced into situations I feel incredibly uncomfortable with and the jobs, to many to count as I haven’t been able to gel with anyone or ‘get’ a lot of social language. Thank you for this video, I read needed to hear such an honest account from someone who thinks and feels the same as me.
Everything you said resonated so heavily with my own life experiences and thought processes that it hit me like a brick. As a 36 year old autistic who was just diagnosed 2 months ago, every youtube video on autism which I have seen thus far is exactly as you described. This is the first video I have come across where I felt the creator has actually had a similar life to my own and talks about life experiences that are substantive. Although I did share in those experiences and difficulties as well, there were more pressing challenges in my life and so I never gave much thought to what you referred to as "privileged problems" because they were so far on the backburner. Even though they were slow simmering for a long time and every now and then they would bubble over, the bigger issues always took the main focus and the most heat, but no one talks about those experiences in their videos. Your video helped make sense of that so thank you.
I self diagnosed at age 65 after my 40 yr old daughter said that she thought she might be on the autism spectrum. We both had our ah ha moment that explained so much of our struggles in life. I was in counseling for another issue so I brought up the possibility that I may be autistic. The counselor told me that if I was autistic ....at the age of 65... I had learned to function in the world with a high level of success so there is little benefit in seeking a proper diagnosis. So.
Wow, what a terrible thing to say from the counselor!! For me personally, receiving the diagnosis helped me make sense of why I never fit in. It isn't about whether or not you just carry on, it's about getting an answer. Peace of mind.
Very interesting what you said. I am 55 diagnosed with adhd but going to the Autism Show, NEC last year blew my mind listening to ppl talk. Am thinking it is just living with it.
I am 64 and visited a GP last week to be referred to a specialist and have a diagnosis. It was all ”what do you a diagnosis for at that age? If you have coped without for so long?” Coped???? Really. All those lost years, feeling like an alien, shut out, being depressed. She said she will consult another doctor and then make a decision. I don’t think I get that specialist. I feel I am doubly betrayed. Not getting a diagnosis as a child, because there was no knowledge then, not getting a diagnosis now, because I am too old and do not matter.
"if you got the headspace to worry about things that trivial, clearly you're doin alright" I love this, my brain is constantly bombarded with literal nothingness in the form of personal requests and tasks that really no one needs to be burdening anyone with, they just need to take care of it. Yet it always turns out that for the menial tiny redundant tasks, I'm the person to do them. Wish people understood how much mental capacity it takes to fufill "can you take out the trash" or "can you clean this pan" as a question, rather than just letting the person notice it naturally throughout a day and giving the person the room to breathe and take care of tasks.
It's refreshing to hear someone talk about an experience i can relate to. Late djagnosed at 53, now 57 and have been told i am now more visibly autistic since diagnosis, to me that's a good thing. A fact people can't get their rouund is there will always be more autistic adults than autistic children, but most of those adults are not diagnosed. We are the feral autistic generation, we have the physical and mental scars, is it really too much to get a little help....apparently so. Weighted blankets should be sized as 10% of your body weight not by the size of your bed by the way.
I’m glad you’re addressing the whole “support levels” versus high or low functioning thing. In the same way that autism and Asperger’s used to be different diagnoses, I think now people are seeing correlation between ADHD and Autism. In ten years they might not even call it “autism” at this rate. These labels and criteria and so on are just models. Not reality itself. They’re supposed to help, not create more division!
My partner and I are both autistic, he was diagnosed as a child and i was diagnosed aged 27. We have completely opposed experiences on the whole early/late diagnosis situation, he hated how he was treated with his diagnosis through childhood and his teen years, always having people assume he was unable to do xyz because of his autism and being treated condescendingly by adults in his life, having help forced on him when he didn't need it because the assumption was just that he's useless. He wishes sometimes that he wasn't diagnosed at all and was instead left to his own devices to find ways to cope that worked for him rather than being treated like he's incapable of anything and also being treated like he doesn't understand his own feelings (this is a big one with his parents, it borders on gaslighting the way they will straight up tell him he isnt actually feeling xyz, hes just confused, because autism. He *actually* feels whatever they think he feels because they know better, because neurotypical) Me on the other hand, I relate HEAVILY with this video, I feel like a complete failure in like being close to 30 and never having been able to hold down a job. College took 3 tries before I scraped by with a pass in my 3rd college, I dropped out of the other 2 after meltdowns I thought were panic attacks. I never graduated uni, I couldn't ever cope with trying to keep up with education and everything else going on in life, I never understood why, I just had to deal with it and I never understood why it was so easy for everyone else and I had to work so hard just to barely cope and still end up with nothing to show for it. I would have loved to get the support in these settings but instead I was just told I'm lazy, smart and "talented" but lazy, and that I was just hurting myself by not working hard enough. We just had a baby 2 months ago, it's been interesting having discussions with him about how we'd go about a lot of things if our daughter starts showing any signs of autism. We both agree a diagnosis will be useful but had to have a long talk about how school will go as we both had such different and difficult experiences, so far we've settled that if she is high functioning like us, we will get her into a regular school and ask what support is available, the condition my partner has for this is that the support be discreet and not a very obvious entirely for her benefit extra member of staff constantly making her feel stupid like he had. Anyway, I am happy youtube recommended me this video, I also feel like an outsider in autistic communities and did feel that initial sigh of relief when diagnosed but shortly after also felt completely lost with no support because "well you've made it to 27 without needing it". I lost my job a few months after my diagnosis, for the same reason I lose every other job, I'm too slow and methodical with whatever I'm doing. I get no support or sympathy from neurotypicals when talking about this, "just get into a different industry" yeah, tried that 3 times still the same complaint from managers, "just go back to uni" yeah, as if me, being unable to keep a job, can afford that 🙄. I've ended up once again just being told my problem is laziness, I mention my diagnosis and am treated like I'm lying or making excuses because I wasn't diagnosed as a child. There's no winning, they just don't want to accept high functioning autistic people need unique support. They see that you're able to talk and take care of yourself and presume the autism diagnosis is just for fun, we're just "normal" and the autism doesn't affect us, its tiring.
That's really interesting. Two different sides with the late and early diagnosis, and now with a child and finding the right plan moving forward as she develops. I might be doing interviews in the future, would you and your partner be interested? If so, email me. If not, then no problem at all.
@@AdultwithAutism I definitely would be, I'm unsure if he would be also but I will mention it and see. Where can I find your email? (apologies if its in a really obvious place and I'm just being blind!)
Hello I am coming up to 63 and have had struggles like yours. Only recently have I realised that I must be autistic and I am experiencing relief and anger and trauma in equal measure right now. I am going to try and get an official diagnosis asap although whether that will lead me to finding anything to help me with the rest of my life I don't know. Right now I want to punch every mental health "expert" I've seen, both private and NHS for being so ignorant and for making me feel worse about myself. I was super lucky in falling into a job which played to all my strengths and abilities and asked very little of me that I found puzzling or impossible. This covered me from my late 20s to my early 40s. I haven't worked for 20 years but on leaving work on medical grounds (depression) I got a pension which has made my life OK. That said, I am aware of having incapacity benefit removed and also the amount of money I have spent on trying to figure out what's wrong with me and in purchasing my substances of "self-medication". I know I am going to face scepticism re being autistic. That is a problem when one is relatively high functioning I think. I have a sense of humour (a good one), never lacked friends, look people in the eye blah blah. I don't conform to the autism stereotype that is always described but I know now, from a squillion other things that I am on the spectrum. Your comments are so interesting. Like you, I wish someone had identified me as autistic when I was a kid so that I could have had support and insight re my brain functioning. I was obviously too good at some things and was going to be utterly hopeless at others but I was really good at the 3 Rs which in my generation made me super-pupil. SO CLEVER! Sigh. Sorry to unload on you but I had to pick on someone. X
Your comment about feeling out of sync with others, and things that others like, it hit me to the core. This is literally the best way to describe the struggle internally to be human with this condition. Thank you for the insight.
Not sure what happened to my original comment, maybe that I mentioned a company I bought a weighted blanket from? Aaaaanyway, probably my favourite video you've done so far Paul! Wont lie, it gave me a lump in my throat by the end as you are explaining perfectly my own feelings and some experiences that I can never articulate and others rarely talk about. Thank you for this, it's nice to hear it out loud. The wall getting weaker as you get older is so very true. I was confused but trying (youth), resigned, tired, fatigued...and now I'm just bone achingly tired on a good day and so fatigued I lose my voice on a bad day. I'm 37 and didn't know autism even existed until 3 years ago. As someone else in the comments said, I hope this goes viral. I think it will help others feel less alienated.
Haha, well at least you know I didn't delete it! I'm just glad any video relates for anyone at all. I'm like you, I didn't know about Autism when I was actually diagnosed, so I had a lot of learning to do. It's actually what brought me to YT as I didn't find anyone who had made more than 5 videos I could relate to. It's why I've done more than anyone actually wants...just in case a topic is relevant! I'm old, so the term viral to me sounds like a transmissible disease! 😂 But I've no idea how to make the video more visible.
I was also late diagnosed, I was 47. I totally relate to what you say about not fitting in even with Autistic groups. I have been kicked out of Autistic groups because I also think differently than many Autistic people especially younger ones like you said. I think many of us experience a unique type of isolation where we can't connect deeply with anyone, including other Autistic people around us Thank you for making this video
I only got my dx at 59. The pro who tested me told my family there was no therapy, nothing to be done about it. That didn't sit well with them. But moving to a place where I was more accepted as I was, has helped me recover from the homegrown ABA I was subjected to next, unrelentingly.😢
@@AdultwithAutismi was diagnosed in 2020 with autism. I am 52 now. I have tried an autistic group but I just didn't fit in. They would spend the whole first hour of the zoom call just talking about where they wanted to meet in person - that was all they cared about. And having MCAS and these allergies I cannot go to those places. I react to perfume + food smells (corn allergy + celiac so I react to any place that is cooking grain) and air freshener, etc. When I would try to explain these issues they just stared at me like deer in headlights. Plus the majority of them were diagnosed as kids. I just didn't fit in. One time I tried to attend one of their in person get-togethers on zoom. It was for 2 hours. I could watch them walking around the room through the computer screen, eating snacks + playing various games. Well those snacks would have been a threat for me as most contain corn or grain. I wouldn't be able to touch the game anyway if I was there. But I was ignored. Someone only talked to me for 5 minutes at the very beginning and for another 5 minutes at the very end. But during the majority of the party I was just ignored + forgotten. Just like I was back in school. I don't fit in with them either. They just don't understand these allergies that rule my life. I cannot go to the library anymore as the hand sanitizer that everyone is using makes my eyes burn, my larynx starts hurting and I get itchy. Then if I stay there I get breathing issues. Air freshener gives me horrid brain fog and can mess up my balance (Pots). If spray type air freshener I get a swollen red face + other reactions. I react to cooking fumes + perfume outside. Maybe I have these severe issues because I have C-PTSD a lifetime of trauma + neglect + abuse. But since the other group members do not have these issues they don't understand it. I am like a strange alien to them. And they just want to meet together to have fun + go to the mall's food court + play games while they snack. And that is exactly the kind of place I cannot go... I have hEDS too. I have my own apartment and from what I recall most of them didn't. I also ride horses. That is one of my topics: horses. And they are horseless of course. I guess I am trying to say that a 52 year old woman has nothing in common with 20+ year olds. And I am unsure how many of them have this severe trauma background. But I just didn't fit in. On a 2 hour call I was only able to say something for 5 minutes. Mostly it was just sitting + listening to things that didn't even apply to me at all. Like the whole first hour was them talking about "where should we meet". I really do not connect with people on various websites either.
i was born 1974. diagnosed only in 2019 though my father thought so but there was nothing that could be done. 100% agree with your assessment on a lost youth, just never having found a place. i too have been jobless, never had a dream of what i want to do or be--just never been a part of my mindset. broken family, 100% misunderstood. told i am depressed but i am not sure--maybe it's just still not fitting in.
It's tough to get so far in life, to then be told something you had no idea about. Makes you question who you are, it takes a long time to find that answer too 👍🏻
Being an adolescent... Struggling with the normal things of that time, and then all this on top of it. Some flippant adult tells you "just be yourself!". The restraint to not slam this person to the floor with your hands around their throat... To scream in their ear at the top if your lungs... The last %#&#!×& thing in the WORLD i can afford to be is MYSELF. I hear feel your pain brother. The 70s were a miserable time to be a kid on the outside. Whenever I see someone getting a taste of great fortune, one that I never had and never will have... My first thought is "yeah, life's fair". Then I think of kids in poverty, starvation, war zones around the world... And that I am not them either. No. It's not fair. Never was, never will be. We take the balls we have and run with them as best we can. That's all there is.
I appreciate the sharing of your experiences and standing up for yourself. I’m 64 and self-diagnosed and have an appointment for an autism evaluation in July 2024. Some have asked me “why? You’re 64.” It’s never too late to discover what has made me tick all this years. I’ve never been able to understand why friends and family distance themselves from me. Why I have always attracted abusive people. Why I would be exhausted and out of sorts for days (sometimes for weeks) when I went to a social event that was supposed to be fun but I couldn’t wait to get out of there. And my absolute intense energy and excitement over my interests and hobbies. I’ve been called boring, odd, quirky, strange, stubborn, and weird.
Really relating to this video....I was diagnosed at 53,almost two years ago...and still trying to get a therapist.The diagnosis has been good and bad...validating,but I have much regret, anger and sadness about what my former years could have been.I am becoming more proud of it,however.I worked in direct care and advocacy for 32 years, but for the last few years have worked in easier, less utterly draining jobs.Music is my main therapy and love.Thanks for posting this,there is so much misinformation and ignorance out there, and this counters that! Peace,and stay strong.
I haven’t even gotten through the whole video and I’m just broken down in tears.. this really hit home for me. Thank you for making this video, I’m subscribing. I know it’s not my video or my words but damn I feel heard through watching this.. I relate so much that it’s overwhelming. I got diagnosed at 21. I’m now almost 23. The last few months I’ve been in complete burnout. Mixed with major depression and generalized anxiety I’ve been diagnosed with way before autism ever came into question. I just lost the motivation I guess to really live life.. Since I’m a bit later diagnosed than a lot of people as well, the people in my life like my family don’t really address my autism ever. I think they feel a bit uncomfortable maybe because they have this idea of what it looks like, and to them I just am normal person with severe anxiety and depression and go through spurts of time where I don’t get out of bed for months. Not out of laziness, because I promise I’m one of the hardest working 22 year olds I’ve met at least. But it gets so bad to the point where I don’t wanna live anymore and everybody is just wondering what’s went wrong with me, and question when they will just get the “old” me back. Idek who the old me is tbh, and the “old” me doesn’t know who she was either. I just did what everybody else did that seemed to be functioning well, with some intense empathy added into the mix. Somehow I just didn’t come off right to most people even then.. I’d get burnt out so quick. When people meet me they think I change and dislike me after so many months because that’s usually the time the depression, or burnout hits.. and I become a shell of myself until I finally bounce back just a little.. enough to be the me they want.. I’m trying to find myself and I thought the diagnosis would finally make me free from my problems because it was supposed to help me figure out who I am. But now I’m even more lost than before.. and it doesn’t help when even the councilors at school or people who are supposed to help those with disabilities are so quick to jump in when I talk about what I’m going through, just to try to disprove my diagnosis, or make my problems seem less than what they are, or knock it down to “just depression”, or “just adhd” or “just anxiety”…. But the autism diagnosis has seemed like my enemy lately. Because nobody believes me and wants to say my problems aren’t a result of autism, or tries to study my every move and response to determine in their mind if I’m autistic enough. I’m sorry I’m rambling, I just wish people understood.. I wish I was understood for once in my life.. and not misjudged or mistreated.. hardly ever has anybody actually tried to listen or understand or learn.. or want to.. Thank you again for sharing this.
Thanks Paul! Another really relatable video. Diagnosed this year at 40. How might things have been different if I’d known? No way to know but I’m glad I know now 🙂
Thanks Marie. Exactly, it's good to know. It isn't about wishing to change what you can't, but how to adjust accordingly moving forward. Well, it was for me anyway!
I have been bullied all my life, at school and work. I have decided to work for myself now, and used my imagination to write child fiction now. My publisher is extremely supportive with my new diagnosis. Now I am petrified of the publicity. There are always challenges in our lives, more than what they call, normal.
I am 59 and was diagnosed Autistic with ADHD last year - I was NOT expecting to feel how I feel following that diagnosis - trauma, grief, rage. Thank you for sharing your story x
Loving the realness here... Comments moved me to tears... All this is soothing somehow... like two days after I watched something that made me realize cause I tick all the boxes at 53. Like your voice too.
Bottom line, rarely does anybody actually care. They don't want to know. We get punished for 'coping', regardless the difficulties. It's indescribably exhausting
In trying to change this attitude of society I’m an 41 yo Neurodiverse woman late diagnosed with ASD 1, ADHD Inattentive, Anxiety, Depression, PTSD and RSD
I'm pushing 50. I never considered that I was on the spectrum until my son was diagnosed. We kept getting reports from his school describing the odd behaviors and trouble he has. I assured my wife that the boy is fine. I was exactly the same at his age. I was evaluated for special education services in the mid 1980s and was told my iq is in the 99 percentile. I wasn't disabled, I was just very smart and odd. IDK what it means really. I navigate the world ok. I struggle in some areas but everyone has strengths and weaknesses. I'm rambling now but, sufficed to say, I can identify with your story .
Just turned 55. Lived my whole life how you are describing. Just hearing you describe it brings back so many bad memories. I don't see much point in getting a diagnosis at my age. I'm just slowly shutting down and shutting out. The way I see it, I'll only have to do this for another 20 years or so. It's nice to hear I'm not the only one, though. Cheers, mate.
I figured out when I was younger how to get a dopamine fix and/or fit in somewhat by making people laugh. I can flip a switch and make everybody in a room love me and want my attention. It feels like a job. A real acting job. Except everybody in the room is left feeling better about their day, and I am completely zonked at the end of it. I need to decompress like crazy! But I can do it. That’s how I have survived all of these years. Make peoples’ a little bit better. I don’t really think I am social at all, except for the few people I’ve met who can go on and on about a science or business project they’re working on. I eat it up! I get so excited for projects and novel ideas. As they are speaking, I am thinking of all of the problems that may come up and solving them. I have often said I want to be a professional problem solver. That is where I feel my best. Coming up with solutions for other people to work on. 😂
I’m grateful for the internet bringing us all together, makes me feel less alone in the world. Maybe we should start a neurodivergent think tank to put our excellent problem solving (algorithms) skills to good work
I prepare for everything! When I am out and about I start going through flashes of anxiety in my mind about what I would do if this or that would happen and what I would do. I can rarely just enjoy the moment. Always on high alert.
Thank you so much for this Paul. You are right we need to understand that there are different experiences within the autistic community and your video has definitely done this. I can relate to the anxiety you are experiencing and the details that you describe are really important. You are doing a great thing in getting us to see “out of the box”( on the autistic spectrum community ). Will be interested to watch more of your videos. Take good care and wish you well.
Awesome video brother I feel ya. I'm 46 and homeless living in my car. I have lost a ton of jobs and relationships and never knew why. I don't seem to fit in anywhere and feel totally overwhelmed by life. Thank you for sharing your feelings, thoughts and struggles. It takes courage to share your experiences. God bless you.
I am glad i found your channel , its is hard being a high functioning autistic and Asperger's as well..... I am 59 and have only came to the realization that i am a high functioning autistic/Aspie for the past year. A therapist suggested it a couple years ago but i didn't pay much attention to it until i met a young man (son of a woman i tried miserably and for the LAST time to have a relationship with ) that asked me me if I was "On the spectrum" ... hadn't a clue at the time what he was talking about . A year's worth of reflecting and i DID have that revelation of holy crap , my entire life explained ! ....... But it has cost me every relationship i have ever had including the love of my life and some of the best friends i had ever known....... Navy career , jobs , Including ones like building high end kitchens after i slowly realized i HAD to work alone , but yet even that I lost because I still had to deal with people and i just cant. My best friend in life that ive lost told me once , " You are allergic to stupid people" and that fits so perfectly !!! I Have always known i was different and in 8th grade a science teacher realized i WAS different and brilliant , soon after after multiple tests they discovered i had a genius IQ . That has really served me well ! I say sarcastically .... Lost everything including jobs , relationships and homes . I was technically homeless for a couple years and intentionally orphaned myself from blood family because of complete unacceptance even after trying for decades to tell them i was different , that my mind didn't seem to work how there's did but all they hear me saying is " I AM A GENIUS " which i wasn't saying at all. Even after my unofficial diagnosis i received nothing but more of the same ..... well, a way too damn long rant already shorter , I now own my own home and shop ( paid in full , nut needs tons of work that's easy for me" where i build custom live edge furniture and never really have to deal with others , just me and my dog. Plus side of Asperger's/high functioning autistic for me is that I can do pretty much anything i want to and to perfection..... but the cost is high as we all know . I didn't think i would find others like me ( late adult diagnosed ) in a world where we are already are so alone . Shit this got long , especially when i mostly wanted to share about that there is a ton of research about natural derivates from mushrooms (read between the lines ) that definitely show promise in helping us , especially long term depression benefits and i will find out , I went from a 185# fit martial artist in what seems like overnight to a 145# husk of myself because of a snowball effect of depression and i WILL get the old me back but improved mentally , perhaps even teach it again , free of charge like before..... I apologize for the rant
Listening at 2am and agreeing to 99% of what you're saying. A female, diagnosed w ASD at 60+ ( ADHD diagnosis at 40÷) my life has been full of heartache and regrets. People think of me as "well adjusted and dependable" ... they don't see the grief, time & financial expense I put myself through to show up as "normal*
I'm 55, and I'm halfway through an ASD investigation. If I get a diagnosis, it'll answer so much. Life has been hard. Update: I am officially part of the ADS community. My life at last makes sense.
First 5 seconds I knew I finally found the video I could connect to. Thank you. I didn’t feel any different when I was diagnosed… I felt the same.. it didn’t answer questions. Then I go to the internet to figure it out, and I end up watching people being physically guided through an already guided dance.
To me, the "dark side" of Autism, was the pre-Dx side. Because of all the harmful misdiagnoses I found out were completely invalid. I was THRILLED to find out that's all it was. Some narcissistic family members, who chose to use me as a scapegoat, absolutely HATE that I now know exactly what it is, because I no longer beat myself up, for the symptoms that "annoy" them.... and because of that, I'm mostly happy, most of the time.
I have noticed, although I have been in denial about it for so long, I don't have the same strength to keep my masks up as I used to. It didn't take long after my retirement for my social skills to begin to atrophy! It's a real challenge at every social event, especially around people I care about! I'm always fearful that when my authentic self comes out, it weirds people out!
44 and just diagnosed this month. And I have BPD as well. Was misdiagnosed bi-polar a decade ago. Was kicked out and homeless from 13-18 in the 90s where I was jumped at least weekly and on so many drugs daily. Had a malignant, narcissist stepfather and poor farm girl mother. I’m a white dude in the USA so no one cares. Love ya bro thanks for the video helps me accept the truth when I hear others explain how it is for them. ❤ I just tell people I am a INTP only told my cousin the truth so far.
Wow, that was like hearing myself speak. So much identification with the content of this video, really validating & just what I needed to hear. Thank You
Admitting you have always struggled with things with a late diagnosis isn't something people can comprehend. In my case people have normalized the things i have identified in what seems to be an effort to discredit the struggle I've hidden. I appreciate how strait forward you are. Thank you
Guess i can't edit on this device but should add that maybe i don't explain well enough. It's hard to describe what is difficult when you don't know exactly what it was
I know what you mean. It is like someone saying 'the answer is 36'...erm, okay? But, what was the question? What am I supposed to get from the answer when we need to figure out how we got here 👍🏼
37. Haven't had an official diagnosis, but, have taken myriad online tests all coming back as strong probability, have been deep diving the dsm-5 and videos like this and other resources; everything you are saying hits home way too hard with me. I am also currently struggling with insomnia, recently had a minor heart attack, and have just been through it. But, holy crap your words sound like my life. A lifetime of acting. Absolutely understand this, brotha. It had been an interesting couple of months coming to this realization.
Hi there! This is the first time I’ve ever commented on a video. I actually watched this an hour ago but needed to come back and comment because I connected with what you were saying so much that I actually cried a few times whilst watching. Im 27 and realised I was autistic a few weeks ago and have since then been researching non-stop about it. I am going to start the formal assessment next month. Plus I also suspect I have alexthymia so watching videos and researching helps me better understand myself and the aftermath of the realisation. Everything you said about acting, trauma and how to carry on afterwards made me cry so much. You made me realise how much pain I had been carrying due to all that trauma. Also, you are the first person I’ve come across that mentions anything like “maybe I don’t have to do that anymore” that freeing feeling of I can just be myself now. I don’t need to do any of that anymore. “Take my foot off the gas and be a bit more me”. You saying that healed something in me that I didn’t know I needed healing or even know I needed to hear. No one else knows how it all feels and you can’t just talk about to anyone because they won’t understand completely. Plus everyone’s experience is different but you explained my situation and life perfectly. I’m so glad I found your video and that you are able to communicate what I cannot. I really have no words to describe just how much this video has impacted me and my healing. 😭🙏🏼 Thank you!
Thank you bro!!!! All the way from America, THANK YOU. Everything you’ve said in this video has literally been me, it’s like you’re speaking for me, and saying all the things I wanted to say, but didn’t really know how to say, oh, when I said them, people really didn’t listen to me, you understand what I was trying to say. It’s so weird to me how you are so much like me yet we look nothing alike, but we’re so much alike inside and in spirit, just know you’re not alone, bro, like I now know that I’m not alone.
I’m 55 & self diagnosed at 50, explained everything. I FINALLY understood my whole life and experiences. Thank you for sharing this. It’s is EXACTLY how it is. Imagine 15 more years of not knowing. Even to be diagnosed or realize what is going on at 34, like you, would have changed soooo much for me. At this point how do I change what I’ve carved out and built my life around? So much clean up to do and self love to realize. So much I have to learn moving forward.
When I was first diagnosed at 45 with Autism still my IQ was higher case workers suddenly told me I needed caretakers and social training like a 5 year old. They don’t refer me as a “you”person or acknowledge your you they talk to loved ones as a “he”and don’t respect me as a person and ignores me when I speak my voice and frustrationHorrible. I agree with your video 100%.
Hi Paul! ❤️ I sooo get all of it! Im a nurse, work in psychiatry. I am sure I have high functioning autism, doctors said I might, buy I have a job so no need for an evaluation. 🤣🤣🤣 Ive become reclusive to that same level. Nothing is worth getting out the door for weeks. Im on sick leave now otherwise Id just make it to work, survive and get back home. Im so tired of the mask, I cant waste my energy pretending that I care about trivial nonsense. Ive become sooo negative and yet, sooo happy and at peace in my reclusion. Your video makes me feel so good right now. Its ok to be me, even if nobody likes it. Big hug from Sweden. 🥰
@@AdultwithAutismit’s like a need I think. And going out and being out in the world has a big big energy drain- even when you have a day. You manage it well. So maybe if the withdrawal part is seen as good, it can be more refreshing. Imagine having 10 people in a room together and they all really like to drink a cup of tea- and some came in and gave everyone the exact same tea- same strength, amount of milk and sugar. That’s not going to work…
I hear you on this. Part of me really wishes I personally had an early diagnosis at least for my own knowledge. But at the same time know that if my school or family had that "label" to slap on me in the 80s I would have been relegated to "special" classes instead of gifted. It was really a different time and understanding (or complete lack thereof). Nothing would have been expected of me and I wouldnt have built the coping abilities i have. But also If I had known myself and not had so much self-hate and self-judgement for my struggle.
I think about it often, an early or later diagnosis. I prefer my late diagnosis because even though it was hard, I was forced to try. Even though a lot say that caused trauma for them, for me it helped me know where my real line of struggle is.
Last 4-5 minutes really hit home.. I’m getting ever more reclusive and very rarely find motivation(apart from work and walking dogs) to leave the house .. insomnia is present - decided early on that I knew having kids just wasn’t in the cards for me .. serious relationships just seem impossible and casual friendships are confusing and require too much energy. I’m left wondering what is there for people like us? I honestly don’t know
We just need to do what we need to do, based off our design. Respond to our environment accordingly. If people don't get it or like it, we just don't go near those people again. It's a shame, but it isn't us who is setting out to upset others, others just hone in on us and make our contentment a hobby of theirs to destroy for some reason.
Brian, you're not alone. I am aware that I too am becoming more of a hermit as I age. I work (self-employed) but apart from seeing clients I do not want to engage with anyone else for whatever reason 'in real life'. I have too have my dogs and am finding that online connections with faceless unknown people is enough for me now. I am so thankful for channels like this, and also that I was born at a time when the internet exists and the world is freely available through my keyboard.
I like to get out of the house to walk. But i dont enjoy human interaction too much. And i go to Church. I wish i had a dog again. I love dogs. But im struggling with auto immune disease...need to become more stable health wise. But i understand what you mean. Especially in relationships...my sentivities and boundaries were never respected. Then i meltdown. Then they call me crazy b. Real life for me.
Dogs are the best...and also very annoying. But amazing distractions. Sorry to hear you cannot have one at present. I hope that can change in the future.
im glad i found your video 30 seconds in its so true! your not aloud to be negative anymore but the world is a mess now i agree. I've only just been diagnosed at 26 and im so happy now because i agree... theres alot of people on the internet who have autism yet i cant relate but i can relate to you. I have always found it hard to look and people and listen and i hate the inner feeling in me its 'i dont really care' but me not caring makes me feel bad but i dont!
I can relate so much. At almost 60 it's pointless to get a diagnosis with the cost involved. I've had social anxiety and regular anxiety all my life. Due to my melt downs they labeled me as having hysterics as a child, all it did was teach me to hold it in until I'm at home. I got tired of the mask, so I just don't leave home unless I have to. I don't have in real life friends, just internet ones where I can edit what I say before I say it. I avoid the phone and will text instead when possible. Bluntly I just don't talk about it and try to stay out of places that I need that mask. The most important thing is you are not alone, there are a lot of us out here who don't fit in to either the normals or the spectrums.
One way to explain "but you've coped ok till now, what changed" is: If you didn't know you had a disease, say a spine problem, and just soldiered on, suffering the ocassional pains and thinking "this is normal, everybody gets those sometimes". Wouldn't you want support when you did found out that, "no actually this isn't normal"? Wouldn't you want drugs and some possible accomondations? Or would you just continue harming your body, worsening your condition, and working harder than others in good health to get the same results, just because you got this far while being oblivious to your problem?
Good point. It's trying to have people understand that it isn't about how much help of assistance can be offered. It's when. When it's needed, it's really needed. Because it has an ebb and flow, I either need next to nothing or everything. This is something I've found health professionals I've dealt have hit a stumbling block with.
Has it been overall beneficial to receive the diagnosis? I ask because I have taken many self-assessments that point towards me being on the spectrum, but I’m 53. My kids are grown, I’m married to a wonderful spouse. But, if I can get relief for meltdowns and burnout, I’ll keep being curious. I’m typing this as I listen. I hear him saying the validation helps. So I’m asking you, would you go through diagnosis again, if you could choose from your current perspective?
I feel that. Don't get other autistic people officially diagnosed when they were young. Got diagnosed with 28 - recently. Tried to join communities online - but I felt like an alien from another solar system hanging around with aliens from Neptun.
It really is like talking a different language. I also think the life experiences we go through change us and alter our natural course with masking...so when we finally get diagnosed, we have to learn who we are before we reach out to others. But it's harder to connect as we are all trying to learn who we are underneath a lifetime of masking.
My doc says, that I / WE, are very special, that us highly functional’s, see through the world in a authentic way! Why, b/c we had to be self aware and ALWAYS LOOKING INTERNALLY! To fix ourselves, mask ourselves and behave accordingly! Futhermore, the rest of the world are not even capable, of looking within themselves! We can! He says, they want fluffy stories, that make them “feeling good”. Where we want facts, truth, and honesty. They want f-ing stories to avoid, being honest. I am sorry, for the pain u have endured, I totally, feel u, b/c I feel ur pain, b/c I have lived in those exact pains! I really do, so much! I understand not to be able to be just me, everything u talked about I experience too. I got my diagnoesed this past June! I am 43, and there is no consensus, no understanding. Of how hard of a life we have suffered, Its a hard existence, my mom asked me, genuinely, why cant u just put ur “mask” back on? I I told her, it doesn’t work like that. They will not go back on, b/c I am trying to embrace who I am. Not pretend anymore. No one around me understand, that I have always needed help, support, acceptance, understanding and freedom. Not b/c I am helpless, but because there is no room for me in this world! They can’t comprehend . That I just need to be me, without being judged for who I am. I am highly functional, b/c I had to, for survival! Nurotypical’s may feel we are the disfunctional ones. When in fact, high functional’s , have superior intellect ( and I am not being egotistical, simply factual!) and we are way more evolved humans. Who see through all the fucking bullshit! I see u! Hear u ! And feel u! U are not alone! We my friend, are fuckin rebels, system busters, we don’t “conform” or “follow”. It is not, and will never be, in our true nature. We are those whom, refuse to conform, for the easy of others. Others, whom do not have the capacity to look beyond the superficial, and see authenticity. Sending u soo much love and light!
I am 38 and have just gotten a late diagnosis of Autism. I was diagnosed with Social Anxiety as a teenager but nothing ever helped it and it has only gotten worse with age. Only now do I understand how my anxiety is linked to my masking and while it is a relief to understand myself better I don't really know how to "unmask" yet. I've been playing the part for so long I'm not sure if I even know who I am.
While I do not like phone calls or live conversations I do enjoy communicating through the written word. It is the only way I have ever been able to truly communicate and connect with anyone. If anyone here can relate to that I wouldn't mind having a few penpals that can relate to my situation.
Hopefully there could be others who can relate 🤞🏻
Its the same for me. Calls freak me out. But i like texting 😂 thats a problem i have in both my personal and professional life....
I forget to text people back...ALWAYS!! Then feel bad for it.
Dang. I was made out to be a coward/weak because I chose to write my feelings vs "just talking about them". Writing things out has always been easier for me, my entire life, and I'm 32 now.
I (49F) was diagnosed last year, in November of 2022...
At first there was a great relief, like a weight lifted from my shoulders. I finally had the answers to so many questions that have plagued me my whole life.
Then I got really angry for a couple of months , followed by grief: "If I had only know..." I went through the 5 stages of grief; I mourned for my inner child; for the life that could have been, but now can never be.
Not a single psychiatrist (4 over 22yrs) ever mentioned it to me. They decided I was Bipolar II, and medicated me accordingly. I even did several stints in psychiatric hospitals.
Today, though, I am happier than I have been in years!
"I've been fake forever for your benefit. Now I just wanna be me." - I feel that.
Me too...Still 👍🏻
When you have been forced to fake it for so long that you have no idea who you are.
@@christopherleubner6633 True.. no own identity. And still we are often so unique.
It’s a pain. I hate it.
These words truly hit hard
I always say, having supportive people in younger years makes all the difference. I didn't. I was diagnosed at 45. I am 56 now and lonely. Always been alone.
And yes, I had to force myself to make it...many jobs later, I am ok in that respect, but sooooo alone.
A lot of us had to go through it without assistance, support or understanding. It will forever be unfortunate until we are seen 👍🏻
@@AdultwithAutism supportive people in childhood seems to make a BIG difference. I don't mean financial.
Absolutely. Just feeling like we're heard makes the world of difference
yes.. its like the validation of being seen to be yourself is sooo important and i think whats broken us soo much
I thought to make you smile - my diagnosis came only three weeks ago. I am 85 years old and suddenly all the heaviness of decades of puzzlement and negative experience dropped off. In my opinion, to have a diagnosis is marvellous. And I am rejoicing, however late in the day.
Your comment makes me smile.
Brilliant. I tell people that it always worth pursuing a professional diagnosis as it may be beneficial in the long run...and at 85, you have confirmed my statement! 👍🏼
Wow, you beat me. 79 this month and self diagnosed at 70. Good luck to you. You now know how special you have been and still are.
@@cynthiastogden7000 I also self-diagnosed at 70. I don't think I'll ever find anyone to diagnose me, so I'm trusting myself. It certainly changed my view of my entire life and all relationships.
Hi. I self diagnosed 1 year ago and told a very few friend and acquaintances. After letting my doctor know I self identify as autistic and with some discussion she added ASD to my medical chart. It was a relief to have this type of support from my doctor. It finally felt safe to tell my family who I feared would dismiss my truth but less likely to dismiss a doctors acknowledgement. I’m turning 70 next month and am so grateful in understanding my challenging life path and more deeply accepting and honouring myself. I hope you come to find more peace in your life. Peace to all persons with autism and other forms of neurodivergence.
“I need more hours in a day to think than there are actually hours (in a day)”
Man that hits close to home hahaha
Haha, still true though! 👍🏻
I know the problem and keep wishing for a 36 hour day and no sleeping so I can keep going.
I didn't know I was not the only one that needed more time to think .
I have a handful of movies that I can play to put my brain into standby. Stargate is really effective. I usually don't even make it past the opening credits. I actually played the Spanish version the other night and didn't even know it. My wife woke up in the middle of the night and heard it playing.
this. 100%.
“I’ve been fake forever for your benefit” so real bro I could basically be an actor rn
You already are, you're just not paid for it...like me 👍🏻
@@AdultwithAutism Wow. It helps knowing that I'm not alone in this.
You most certainly aren't alone.
I have been describing what it's like is that I spent my life acting normal, but I'm a terrible actor.
Neurotypical people don't get that what brings us to a diagnostics as adults is precisely that it gets harder to deal with all this, and we are suffering more than before.
Keep it up, man.. it's nice to hear a working class down-to-earth voice speaking about these issues.
Thank you 👍🏻
This is so true. I hit an impenetrable wall in my late 40's and thought for sure I was going off the deep end for good. I sought answers when meltdowns went from a few per year to 1-2 per week.
Typicals typically don't like atypicals. They can't think outside the box.
@@jonkas4542 oh, but they often can. The problem is that they think we are just that: people who "think different". My experience is more like being trapped inside a box than anything.
I'm 50 and was diagnosed last year. Nothing has changed. My work's HR is useless, my family says I'm fine and labels are meaningless, and I don't even know who I am without the role I play. I'm glad that it's official but I'm still stressed and still tired. *sigh* Thank you for sharing your perspective.
Workplaces have a long way to go, and with all due respect...your family have some education to take on board about your Autism mask 👍🏻
It’s weird isn’t it, this late diagnosis? Nothing changes but everything has changed.
I feel you mate, im 49, recently diagnosed and im feeling that now it's got a name.....now what.
Absolutely. Nothing changes except everything. It's like waking up from the Matrix 😂
That 'now what'feeling lived with me for s long time. Now I realised my version of 'now what' was to take better care of me and make myself important for once. Never realised up to that point how much I'd been someone for everyone else...except me 👍🏻
I am 70 years old and have only had a gradual realisation of this explanation of my life during the last 5 years. I'm glad that young people now have more understanding and help.
I'm glad younger people have access too. Shame we got left out 👍🏻
I'm 68 and in the same boat. A few aspects of my life ruined in a way.
@@binathere2574I’m 39 and just came to grips with an autism diagnosis a year ago. I look back and cringe when I see how it affected in a negative way. Worse yet is every relationship I created and maintained was due to masking and my ability to mask is lessening
We really don’t, though😅. I was diagnosed 4 and a half years ago at 35 and so far have got no help or accommodations though I’ve been constantly asking for them. I’m I. The states so we’re very behind.
I am 61. My “official” diagnosis was me asking my psych, am I autistic? He said, yes autistic and adhd. Facepalm!! Oooooohhh!! The hardest thing now is no understanding/acceptance from my son (who has a son with non-verbal autism)
I get you.
"The older I get, the easier it is to break through my resilience wall"
Freaking a... this is like the exact wording I've been needing to use that I couldn't think of on my own. Always told I'm so resilient, and realizing lately - especially in work - that I am unable to handle less bullshit and stress than before. That I've been living "fake it till you make it" all my life and faking it is just becoming too heavy a burden nowadays.
Yep, I know that feeling. I could always just keep going through it and deal with burning out on my own time. As much as getting older each day helps with understanding my Autism, the resilience isn't what it used to be.
I think the reality is fake it till you breakdown. And try to engineer a situation that requires a little less fakery.
Can't say you're wrong there 👍🏻
I can definitely relate to this. Thanks
@@AdultwithAutism😮
I hear you. When I was a kid, autism wasn’t a thing, then only boys had it, then I was too old to be diagnosed or considered. I got diagnosed at 52. I’d grown up, had a terrible time with work, gotten married, had a terrible divorce, wasn’t able to bond properly with my kids, so much! So much pain could have been avoided if I had known. So many paths unwalked because I didn’t know. At first it was a relief to find out, so many questions answered. Now it’s just depressing.
I know it isn't a comfort at all, but I get so many emails from people like yourself who have followed the same path and results. A lot more needs to be done to bring this to light
@@AdultwithAutism Thank you
👍🏻
Hang in there - I just got diagnosed at 58 and had a similar work & divorce path. I am actually embracing the positive side - my brain can do unique things that I can harness for good. I'm learning (slowly) how to manage the downside (emotional regulation & vagus nerve resets) and embrace the creative and analytical side in new ways that make me grateful for my unique brain. I still have bad days, but I've hired an Asperger's coach and I'm starting to share my diagnosis and ask for help and getting more comfortable with that. Hang in there - you're not alone.
Yes indeed 😊
I'm 52. I have SO MANY memories growing up as a kid and into my teens of being socially awkward. Watching other kids have 'fun'. Sitting at the back of the bus and watch the noisy kids blabber out loud and stare at each other. I don't have an official diagnosis of anything but I know I'm wired differently. I perform my job very well. But avoid company parties. Social anxiety is practically painful while I try to absorb and digest all the noisy information around me.
I got diagnosed at 43. Honestly, when I received the diagnosis in the mail I started crying. I finally knew there was a reason for who I am, and it has a name! My whole life has been one giant struggle. I've always known I was different in a bad way because I'd say the wrong thing, ask the wrong thing, do the wrong thing, get beat up, get ignored, get overlooked, and a dozen other things and get in trouble for it. I've had trouble keeping jobs, keeping relationships, keeping independent to finance my own life. I've had constant anxiety about anything and everything and an unending inner monologue analyzing anything and everything. Everyone has given me hell about my sensitivity to light and noise. My wife gets angry with me for my autistic traits sometimes. I guess she mistakes an explanation for an excuse. I'm really tired of wearing the mask to make everyone else comfortable. What about my comfort? And to compund things, I'm also bipolar type 1. Yay me!
I'm 63, and can say it's pretty much ruined many aspects of my life. Not the autism itself, but the lack of support, and the not knowing what the hell was wrong with me, the inability to fit in, and the lifelong difficulty with employment. I'm with you on the fear of parking, and the fear of being late (and a whole lot of other things!)
Yep
I can fully relate to that 👍🏻
𝕄𝕖 𝕥𝕠𝕠!
This is interesting . It sounds like how I talk myself into quitting almost every job I have had . At 60 never diagnosed .
I found some issues I have says bad in my life after looking to understand autism, so I could better understand why my grandson is autistic and maybe him ...
Now I need to understand myself.
@@kevinmiller8265 There's so much information online. It's a real eye-opener. I don't think autism was picked up in schools at all when you and I were children, so there's a whole generation of us out there who have struggled all through life without a clue as to why.
This is the most meaningful video about autism I've watched, and I've watched hours of them. I've tried to tell the few friends/family I had and they either pushed back angrily or disappeared. The downside of being (relatively) good at masking. I don't know what the new landscape will hold, but at least I am coming to understand who I am instead of trying to figure out how others want me to be.
And I hope your journey gets you where you want to be. Being who you want to be is the best first step to take.
The downside of us being labelled unempathetic as Autists, while family and friends act like that!!
“Missed opportunities”
This is a major one that really does my mind in if I think about it too long. Recently diagnosed at 39 and I look back on a life of masking and confusion .. a diagnosis answers a few questions but raises a few more. But yes, the things that I’ve missed out on are enormous .. I’m honestly not even sure what a “good and balanced” life looks like for someone with autism …? I spend so much time and energy recharging that I barely have energy left to do much else
Same. After I am done with what I need to do for everything else...I am spent. So spend free time recharging, hoping to have enough left for the week ahead to do it all again.
Hey it’s not too late. I am 62 and looking back, my 30s to my 50s were the best part of my life. Be strong and have hope. I’ve been aware of being on the spectrum since I was very young but I struggled and achieved a reasonable level of functionality. But people often told me that I was my worst enemy! l didn’t get it. I do now. Like they say ‘wisdom is the comb that life gives you when you are bald’. Many regrets but it could have been worse. All the best.
Omg you are literally describing my reality!! Down to the emergency exits, parking, everything. You have captured this so perfectly. I'm 35 and its EXHAUSTING.
Sure is. Glad you could relate 👍🏻
Came here to say this. Until it was said in this video I had forgotten this was a thing, it was just something I did without even noticing, but have always wondered why no one else ever took the time to worry about these things.
I understand this wholeheartedly and it really isn't pleasant to admit that. I have never really connected with autistic groups. I was even pretty wary of the group my psychologist formed of her adult-diagnosed autistic clients for the longest time. It took a while but eventually I did start to attend the group meets and it did change my opinion finding that they were all of that similar mindset. That we don't fit in with the early-diagnostic crowd and it gets incredibly lonely trying to find neurotypical people to indulge in our interests on our terms with. Even in this group with something like 12 active members most of us don't share similar interests, but it at least allows us a space where we can discuss topics we find interesting during the groups, and we've started arranging hikes and other outings together. The focus being so often on young people and early detection is good in the long run but it also has the unfortunate side effect of making anyone diagnosed as an adult feel like they're just damaged goods. "Oops, we missed that one, ah well, it'll sort itself out."
Sounds like a decent group if you're getting out on hikes...although with my bad knee, I can't even do stairs without pain, I really should go to the docs about it now.
It really does feel like the late crowd are considered as damaged goods, past the point of no return etc, and we get swept to one side. It's not nice, but I live the reality of it. So when people disagree ans say it isn't so, they forget I share genuine experience.
@@AdultwithAutism I'm hoping you're getting some of the perks of a group using this channel as an avenue for your thoughts at least. You have some dedicated watchers for sure and at the very least that has to take the edge off of feeling alone at times. You've always got that in your pocket for proof, even if only to yourself.
I do Remy. Its a good outlet 👍🏻
I went to the autism show, NEC. Blew me away listening to the speakers, half of which had autism. Although l was diagnosed with adhd it is the fall-out from school undiagnosed & with dyspraxia, dyscalcia along came the chronic OCD from about seven to twenty two. One long struggle, think have read enough about the subject without waiting for any (more) medication. Just getting on with life...
It's crazy as my Autism stops me going to places like that, even though I'm sure there is benefit 👍🏻
"If you've got headspace to be worrying about things that trivial, you're clearly doing alright." One of the best quotes ever.
Pretty good that...I wouldn't come up with that stuff if I thought about it! 👍🏼
Chief issue is they’re *NOT* trivial to Us.
@@dennisyoung4631 Who's "us"?
@@nate2838 those not NT.
@@dennisyoung4631 And what are the trivialities that you find to not be trivial?
My comment is replying to and agreeing with autisticadult referring to the trivialities of naming conventions and fork placement versus things that have a MASSIVE impact on the lives of many autistics. And yes, I am one of the autistics that views the naming conventions to be so incredibly trivial by comparison. I've NEVER had the word order of anything in a naming designation provoke such an intense anxiety in me it was absolutely everything I could do to decide to continue to exist for another second at a time.
Really glad to hear you address the issue of resilience. I'm 68 and the diagnosis is in process. But oh my yes, so many things I have pushed myself through in this long life of coping with trying to be like everyone else and forcing myself to do things because that's what 'normal' people do. The cost to my psyche has been enormous! People talk about strength and resilience as though they are infinite and they bloody well are not!
Absolutely! There is a limit, and what people don't realise is...we can feel the limit! Feel our resource draining, feel the difficulty in recharging each and everytime.
I feel you on this. I barely know who I am because I’ve been actively told to mask since I was 5 years old.
@@AdultwithAutismo no I think I know what u mean, kinda wish I didn't
@@AutomaticDuck300shit, that's bullshit. U know what I don't know u, but I'm pretty sure u r great. I accept u
@@AutomaticDuck300same here ..I’m 39 and recently diagnosed and I realize every relationship I’ve built and maintained was due to my ability to mask. I don’t think they even know who I really am - I don’t think I even know
I'm in Texas, I wasn't diagnosed until I was in my early '50s. When I was fighting to get anyone to even talk to me - at least inside the county's health system, "The only deal with children with autism!" -- I AM a child with autism! I just managed to keep from dying for 50 some odd years! I haven't tried a group of autistic people to interact with, I am sure it can be challenging, and you make a really good point that late diagnosed means you didn't get any special consideration coming through schools and such! Good video. A lot to think about!
Thank you 👍🏻
I found in my 50's a support group of only autistic people and it has been invaluable, I cannot recommend it enough. We are all so different but instantly comfortable with each other.
thanks for your comment Thoughtstorms_Keith i'm also late diagnosis at 50, yet to find a group or a psych i can trust, mental health services spat me out, family think i'm just lazy and playing for sympathy. i did some inner child work alone with no therapist and its so hard. i hated myself so thoroughly for not doing well with people.
@@ravenspace your last sentence was the story of my life until about 28 years ago, about age 32. At that age, i resolved to stop hating myself. It seemed to me that it was hurting only the people i'd never want to hurt. And doing me no good. I know i make it sound like it was easy, but it did come at the end of more than 18 years of struggle. I still haven't managed loving myself but the constant self-hatred is truly corrosive and i don't miss it. I hope you find help of one kind or another!
i think there is a shift happening, hard to do it on the flanks of a three + year burnout.@@thoughtstorms_keith i appreciate your comment so much.
I was just diagnosed at the beginning of this year at 41. Thank you for this series, I think it is important. It's not the flowery bits and it's not just the extreme worst cases. It's the thousand needles and arm and gut punches you get all through every day of life when your undiagnosed for decades. When you've developed masks for every occasion, and have enough practice to make new ones on the fly for new situations. When you've done it so much that you know you can't take people with you from one environment to another because they won't recognize you there. When you've been pointing out symptoms that later got you diagnosed, and being gaslit or attacked for decades for it before being diagnosed because you should just suck it up. Being belittled and berated for the social mistakes you didn't intend because your body language and demeanor are different, so no one believes you when you try to apologize. Wanting to commune with small groups or individuals to learn new coping strategies and get new ideas, but you need the "move your hand like this" and "hold the tool like that" kind of explanations that cannot be communicated through words, text, or pictures properly. All the groups in my area are all for parents of autistic children. Where does it go from here? I know that problem...
I hear you Randall, I really do. In a world where we are told to be all accepting of all things...yet we aren't accepted over something we haven't made up, but also something out of our control.
Sometimes, even just 5 minutes over a cup of coffee to explain things from my perspective would be something amazing for me, but the reality is people aren't interested, so it's a waste of their 5 minutes.
As much as I doubt it'll change in my lifetime, I still wanted to put the video out there to be a torn in the side of people who make out there aren't obstacles dedicated to late diagnosis.
Im 43, still no autism diagnosis, only adhd. but hell... yes, yes, and shit yes.
Hugs! 🥰
@@AdultwithAutismI got to say that this video is also validating for people like us. Because you hear that you are "complicated" you just have to let things go, relax, be yourself. And when you do... you are too emotional, stressing over nothing, you are too prepared and it feels unnatural. There is no fucking right way!
You shouldnt care about what people think. You are toxic independent, you never ask for help and when you do and nobody answers your call you feel like an idiot. 😭😭
Your burned out but its on you because you are "too invested" you have to work on being good enough but you must remember to deliver quality care. 😪😴😭
I find this video very reasuring and soothing. Thank you!
Its a shame that caring and wanting the best is seen as a negative these days! 👍🏻
47 … life fell apart again. made a couple good friends though. One is is high-functioning ASD & another who is resistant to my self-diagnosis but is helping me as a second set of eyes while I self diagnose. Had to cut most family and friends off as I go through this.
Just learning about and that I am AUDHD/PDA/monotropism/dyspraxia CPTSD/PTSD betrayal trauma and the mastery of too many masks.
And I FEEL every bit of your experience … viscerally.
Thank you for being a rational, relatable voice in my head!!!
There is something called post diagnosis grief and it should be more spoken about.. it's dangerous to reanalyse your entire life, each decision and the what if.. the what if is the worst because even the good decisions get to be questioned.
I am still ahead of my and my daughter's diagnosis, but you made a really good point there, parents now have a bunch of support and if willing to educate themselves then can be prepared how to guide neurodivergent child through life.
I always knew I am different, like I haven't read a manual that everyone else did. I couldn't "just find friends" as I was told to, just understand the social aspects, just not be so sensitive, just get over things and the list goes on.. however my life goes by the book according to social norms, school, uni, work, marriage, child... and it's challenging being "different" to a "different" child, but only because of my daughter being during diagnosis, I have started to put a name to the difference, that I am not just making this up and this journey will be bumpy but at least thanks to finding out more about autism, I know how to help myself.
Thanks for the video, it's an important one.
I've never heard of post diagnosis grief, but it's something I'll have a look into.
It would be dangerous to place your future in the hands of a theoretical past I agree, it's more important to adjust accordingly with facts from each day moving forward.
I laughed when I read 'just find friends' as I know exactly what you mean. Like when people go on holiday and they just start talking to others and end up holidaying with them every year after...it blows my mind how that happens.
I just found this video. I'm 68, diagnosed at 65 and really feeling the grief. I have 3 neuro-typical children - sometimes I wonder if I had them so I could have some friends. Well, they grew up and away but had their own challenges due to being raised by a mom who wanted them to be her friends. There was no discipline or direction from me when there should have been. Lots of problems for them. Lots of regrets for me...
No, thank you for this comment. I thought I was the only person who was dealing with something like this.
@@lee.m.506 sending loads of love to you ❤️ being a mum is difficult itself, but being a neurodivergent mum it a whole different level!
Sorry to hear you have the regrets. You'd be surprised how common this type of thing comes through into my emails. Not a comfort I know, but you're not the only one. Hope you're okay 👍🏻
I hear you. Being diagnosed last October age 56 was a relief in many ways, but then there's a whole lifetime of trying to do things I was incapable of doing. The constant sense of failure, going from one job to another and literally becoming an alcoholic just through the pressure of getting out the front door or using public transport. I'm never going to learn to drive. Just couldn't sit in a car with an instructor every week. And I would have loved to be a doctor but going to college was so traumatic I ended up unable to leave the house.
So I'm angry that I've wasted my whole life. I might as well have just been flapping my arms until I could fly. Never gonna happen. God I tried so hard to do all those things everyone seems to manage so effortlessly.
It's time to put myself first now, at this late stage, and go into a kind of recovery mode, or self-care, and stop trying to fly. I will be saying no a lot this year.
It's good to read that you're going to take control. Rather you take control now than carry on letting a world of societal expectation continue to affect you that doesn't fit your design.
You cannot pour from an empty cup, you have to be okay first. Once that is achieved, then you can think about others, it cannot be done the other way around.
No isn't a dirty word when it is about your wellbeing, it's the most empowering word you can use.
I am glad you shared - thank you
👍🏻
There are many of us in the same situation, looking back at the carnage and collateral damage, the wrecking ball of being undiagnosed, misdiagnosed or just not able to comply with the system because it is set up for NT and conformity. I am on the cusp of 60 and just realizing what this brain has been up against. My field of dreams has been covered by the ashes of dysfunction. That’s a reality that nobody in my life wants to unpack.
😢 I struggled, prediagnosis, like everyone else on here. But my Hardest years were postdoagnosed, when suddenly I was being severely presssured to catch up in conforming to social norms, every day all day, no let up until I closed my bedroom door at night. I took it for 4 years. Then I Demanded to live at a different place! It is a little easier here. But the social pressure to conform sneaks up on me here too. Ps. 2 months on, I am slowly learning I don't have to cave to pressure to socialize when I need to recharge. I even one day left a note taped to outside of my door, "Please do not knock on my door, I am resting, I am fine."
I appreciate your candor and detailing... I am 47 and just realized in the last week my own ASD as I'm trying to put together how someone with a degree and so much potential in life ended up living in a basement suite in a small town after having lost a job due to a meltdown (again), and now working part time in a fast food restaurant. I think the part that hit hardest was the feeling of losing resilience. People just don't get it. They say, well, look, you've done it before, you can do it again -but it gets harder to convince myself 'things will be different this time' and give things another go. I've dealt with social anxiety and depression/suicidal ideation for over 30 years and I'm just so incredibly tired. I've built, destroyed, and rebuilt again too many times to count in the last 3 years, let alone in the last decade. It makes me really angry, because it was so hard to do it in the first place and then it all just gets wiped out and you have to roll your boulder up the mountain again like Sisyphus... You get judged so harshly by people you know for just 'screwing things up', if you just managed your emotions better, keep your mouth shut, enjoy a 'team building event', or not express an intense loathing for forced participation in events like Secret Santa, you could've been so much further ahead. The only thing left I feel is pursuing my intellectual interests, getting it to writing or video, to at least 'show them' I'm not just an incompetent 'self sabotager'. Who knows after that. Every year I kick the suicide ball into the long grass and say, ok, try to make it to 20, to 30, to 35, at least to 40... It's my hope, that by working through this, I will at least be able to feel some sense of accomplishment by 50, which is in 18 months to the date... Apologies for the detail.
Don't apologise, I understand completely. If we could just focus on the work, we would be the most valuable assets to a company. Instead, you are not judged on your competence, you are judged on your network and social skill...and like you say, the 'joy' of forced fun that takes it's toll. It isn't just the event, it is the lead up to it year after year...it is like asking someone on a specific time each year to stand still so you can punch them in the face and there is nothing they can do about it. I am pretty sure they wouldn't be too fond of that either.
It is painful to consistently do what is outside of our design, and even the nicest of people...we still have to mask for. Which builds resentment because if we were truly accepted, why do we still need to mask?
It is tough, but look after yourself.
@@AdultwithAutism Thank-you... Much appreciated. Just will keep plugging away.
👍🏻
I feel your regret and pain. I am only recently realizing that I am legit autistic. I am in an ok place right now but feel like I am a push away from having to live with my parents or brother.
I feel your pain. Sometimes I wish there was something to turn the emotions off. Losing jobs because you melt down or inadvertently do something else wrong. For example I worked at a place that laser welded parts. The job was time consuming AF. So o made a die plate that held 144 of the little valve stems and created a nesting routine so it would do all 144 at once. What I did not know was the customer was being billed per time not per part. The job was supposed to take 6 hours per 1000 parts, I did 1000 plus in a bit over an hour. Fired. Another one was when I pointed out why a mat failed to press properly to a customer, told them we just installed the press platen and they need to be seasoned like a frying pan and the 3rd one will come out OK. Sure enough 3 4 5 OK. The boss was humiliated because he didn't know how to tell the customer why it failed. 🙄 Got a surprise drug test the next day, was clean. Two weeks later they let me go... reason. Did actions outside of job responsibilities, and do not fit the corporate expectations of duty. Asked exactly how and all they said was it was a "business decision" 😪💩😕
Accidentally found this video. I send you my deep support. I associate with everything you say. I come from eastern Europe where autism still doesn't exist! So my priorities are different. I strongly associate with you saying that we are wanting to put candles on a cake before the cake is baked. I often thought this way about many subjects. Not just autism. And I got diagnosed at the age of 29. And I am still expected to go on. At work, at home...
I did hear about that in Eastern Europe not acknowledging Autism. It's tough enough here and they accept it! My heart goes out to you 👍🏻
@@clanofrobertson2040Stop the bullshit. Autism is not caused by vaccines.
True about communities. They aren’t immune to hierarchies and in-crowd out-crowd clique crap which alienates me instantly.
Same 👍🏻
I think most of the people in most online "communities" these days have NPD, even if it's a forum for ASD!
I was a nurse who became a stay at home mom when my children were young.
Even as a trained nurse, I totally missed that my children and I are on the autism spectrum.
And my mother and father, siblings, ex husbands.
My whole world was full of autistic people and I just put it off that we were all a bit quirky.
Thank God above that autism awareness and education are opening our eyes and hopefully our hearts.
True. Although you will see in my video on Friday where I think there is a problem with some of the information out there 😂
Same! Pedi nurse here
I’m 53 and recently diagnosed with Autism spectrum disorder. I was blessed to meet a new counsellor I really clicked with, and she saw it right away! Her astute ability to dig deeper and really see under my masks, resulted in a diagnosis. This diagnosis freed me and I finally understood my whole life!!!! It was crazy!!! All of my life, I felt like I had been dropped off on the wrong planet. Yes I have regret and wish I could have had an early diagnosis, but now I can finally ‘get myself’ and adjust my life to what I need!
Ps. Trauma upon trauma break you down mentally & physically... I feel this deeply.
It will do eventually. No doubt about it 👍🏻
This video needs to go viral, it is that good!
Haha, thanks Catherine, I appreciate that.
I got my diagnosis at 45. I wish I had it before. The feeling was, somehow, liberator. Just like you I had (and still have) serious problems with sociability. At 7 those problems were even bigger. But ASD level 1 (former Asperger) received an ICD only in 1994. Today I'm glad I know myself a little better. I allow myself, occasionally, to simply give up on things and people and not fell bad about it.
I think that is a personal victory once diagnosed, you feel validated in allowing yourself to make decisions that benefit you, decisions you may not have otherwise made 👍🏻
This is so refreshing to hear someone with exactly the same thinking / mindset as myself. I’m 64 and just going through the process.
Best of luck 👍🏻
This is by far THE BEST description of how hard it is to get diagnosed and have autism as an adult!!!!
And to hear that another autistic person also can't understand why it is so difficult for neurotypical people to accept talk of negative things, things that could be done better (especially when the same neurotypical persons are the ones talking about the need for improvements, innovation and so on), is SO soothing! Cuz I totally feel the same! And I can't for the love of god understand why it is so difficult for neurotypical people to just embrace talk about negative things as, at least for me personally, the only reason I talk about negative things is because I genuinely just want to make things better (but apparently neurotypical people really don't want that - or don't really care, or can't muster the energy or something - since they don't change negative things themselves despite them also talking about negative things a lot ..)!!
Thank you 👍🏻
And I'm the same. I want to talk the negative to stop it being negative anymore. If its flawed, let's fix it. If its a problem, let's solve it etc. It's to be done as a collective, not to sell anybody out. Its for a greater good surely!
Yes yes yes.
Thank you so much for literally vocalising how I feel and my existence. Diagnosed at 51 with no prior knowledge or experience of autism other than "Rain man". I'm 2 years post diagnosis and still trying to figure everything out. Never felt so isolated.
Really glad the video was useful 👍🏻
Super relatable. At 41 if I told anyone (work, family, very few friends) it would only cause more distance and lack of understanding. I'm different. Okay fine. I hope someday to find real in-person neurodivergent friends, but until then (if it happens) there's some relief found in the online community. Btw, parking garages and parking in general stresses me out too. Like I won't go unless I have a plan and fully understand it. Can't afford the stress of flubbing up and feeling panicked.
Yep, the plan is needed. I can't just pop out to the shop randomly without planning it first 👍🏻
I do the same thing. I have to know in advance what to expect and people sometimes get annoyed about it if others are involved.
Also, the planning takes mental energy so I factor that in as well.
And Katie bar the door, if someone has parked in "my" spot where i usually park. If it's at work, I'm a mess for hours. If it's a store or other business, I'm just as likely to turn around and go home
HI Paul, very well said. I can completely relate to what you are saying. I was lucky, in an unlucky way, as I was diagnosed with ADHD at 12. A lot of my difference if you will were explained. The autism diagnoses sort of completed my profile. I also agree that when you start unmasking people wonder why now. They have no idea the life you have led. Just as a weird example. I was at Disneyland with my dearest friends and we went on a new Star Wars ride and I was so excited that my mask completely dropped. I was jumping around, hands flapping with complete and utter joy. After they said that they had never seen me so happy. Of course that is because I have masked myself for so long. Never wanting anyone to see the real me. Anyway a crude example, but you are so right about late diagnoses. Excellent video. Great series.
Hey Bryan, at least you enjoyed the ride!
The closest I get to unmasking in public is when I'm alone in my car. I can sing my head off and make all kinds of musical noises that if heard by others, I'd no doubt be assessed for losing the plot.
Oh! Must of been sooo awsome! At Disney! and you, hands flapping and all! 🥰🥰🥰
@@AdultwithAutism I wonder about that. My family and closest friends do that all the time. I don't allow myself to do that in front of others, not even my family lol. Though I have been abused for no logical reason so caution is at the forefront of my mind.
Caution is good, as there are unfortunately some less than decent people out there
I started singing a hymn in my car after the police demanded to see my driving licence (near an anti fracking demo) 6 years ago. They then served me with a section 136 (to detain me and try and get me sectioned), thankfully I knew to straightaway start acting "normally" and calmly, and the psychiatrist concluded I was not a danger to myself or the public and let me go immediately I was assessed several hours later. The police have a LONG way to go to accept people with autism who are engaged in direct action campaigns, using their autism to destablise them, hey the police even wrote to the DVLA saying they believed I had a medical condition after that incident, that affected my ability to drive, but autism is NOT a condition notifiable to the DVLA, though at one point they mistakenly indicated on literature that it was. I had broken no laws, but that does not stop the police misusing their powers to intimidate successful and persistent environmental campaigners such as myself. @@AdultwithAutism
“That mask you wear is burdensome the older you get”. What you were saying has been the story of my life, especially many of the difficult things you said towards the end of the video.
Hearing you talk has been so helpful to have my life experience’s validated, and to grieve for all what could have been and what has been lost. Only now after 65 years am I beginning to come to terms with the acceptance of my completely misunderstood lifelong disability.
Thank you for all the time and energy you put into sharing your life story. It is very worthwhile and so much appreciated.
Thank you
I am 40, and I'm on a 2-3 year wait for a diagnosis of autism and ADHD. The more I listen to other autistic people ands those with ADHD, the more I am sure I have the conditions. As you said, things start making sense once you know why you are the way you are.
I thank you for making this video, it is very informative. I really identify with what you say.
I am going through the PIP process at the moment, as a I am the tribunal stage. I see no how, unless God does a miracle. My lack of support in the past, lack of special educational needs school, the fact I have at the age of 50 had I one job, etc has been (it feels) used to try to highlight my lack of need for PIP. I am currently in burnout, I've had to give up that employment, am mainly housebound, because of sensory overload, and do find everyday tasks hard or impossible. I am very isolated at the moment, and j have had 2 visitors to my home in 26 weeks.
Is this 'normal'? It doesn’t appear so, and I hope this will be seen and taken seriously. I am all on my own, and people do not understand. I need to discover who i really am, but do not know how to. It is a big learning curve, with no instruction manual - I'm just glad that I have people like you, who understand. I feel more at home with you all.
I'm glad you can relate to the video. Your 'normal' is more normal for me than the other versions out there.
I will do a future video on 'You've Always Managed...What's Changed?' mentality, and I hope it will be helpful too.
I am too going thru the exact same thing it's very isolating. October my relationship ended, I moved not sure how, did 3 months of school in 3 weeks so I can get student loans to survive. Take care of my special needs 6 year old boy. Could not get him to school on time potty train him and now he is staying with his dad cause I am totally burnt out and literally sick from trying to do everything I did and trying to be like a normal person. I couldn't even work the 13 hours a week and quit. So 12 weeks alone in this place no one visits and even if they did I wouldn't be able to be normal I'm just so burnt out and sad and lonely. I should be so happy, I'm out of a bad relationship, I'm living in the dorms at the golf course for only 100 which I struggle to pay. I can stay here through the year if I work here but hard to be around people I feel like an absolute alien. I just try and get through the day. Lost in my mind of negativity because I can't function. I'm lucky if I get one thing done but life today that's not good enough when we have so many responsibilities. Then to talk to people when I have appointments to try and get help and they just say I have to force myself and I just want to not think or be or exist because it's too hard sometimes.
I'm just finding your channel- it is so true! Many women received late diagnosis because our characteristics are different. Also being "high-fuctioning" is more difficult than otherwise. 😢
Thankfully there are countless Autistic females across the Internet raising the profile of this these days. Maybe someone will take note one day! 👍🏻
Amen, sister!
I'm on my third video from adults talking about their experiences with autism, especially late diagnosis, like your own, and I'm beginning to choke up. I'm listening while at work and trying not to look like I'm fighting getting teary-eyed.
So much of this is me. So much of this, at 35 years old, is me almost to tee. I can't believe it. I've been inching closer and closer to the edge of losing my mind and throwing away everything out of sheer frustration, loathing, panic, loneliness, and depression because of still having exactly the same crippling inabilities since I was a child. I've never been able to break through to the other side and grow, to develop, to learn the things that have held me back for so insanely long. Especially when dealing with confrontation, I explode. We just hired a mid-40's man at my work that has a much more obvious level of it and I started noticing how similar my outbursts of frustration are to his own. I've just been better at hiding it over the years as I've learned to cope with... well, every type of method I've heard about so far. I do it all.
I can't believe I never tried looking into this sooner. Not everything is exact, like eye contact (most of the time), or diet, but everything else is exactly what I've struggled with for my entire life.
I haven't had a relationship or made a new friend in 12 years. I never understood how everybody around me at work gets along so genuinely and with such ease. The teasing, joking, flirting. I want all of that but have never, EVER understood it. Every attempt pushed people away. I'm so lonely and disconnected from being myself to everyone.
Until now, it was always a combination of high social anxiety and depression. I'm calling my doctor tomorrow first-thing. I'm in such disbelief that I'm genuinely choked up.
Sorry it hit you, but definitely explore the options you have available 👍🏻
@@AdultwithAutism I plan to, thank you so much for sharing. It was just an intense little while hearing all of the things I've struggled with being described so accurately by somebody else that understands.
Thanks again!
I understand your pain man, and I'm sorry. I know it's rough, and I know the struggle of fighting what you are to show others what they want you to be. In the end I burned out and crashed. I was the homeless autistic man that people threw food at on the street. There is no compassion, there is no care. When you don't behave the way they want you to you are discarded and left to rot.
and if you don't find the same things funny that everybody else does, you're a miserable person with no sense of humour. I get exactly where you're coming from
It's not just you, I felt that way my entire life. Diagnosed at 57.
Always good to not feel alone in thought 👍🏻
Yea that’s great really …. It’s difficult to express yourself as to why people don’t get it
I’m just one month diagnosed and I am 59 years now
For me this news is phenomenal…..
Good lord I am totally grateful to know that I am wonky by design…. I love me and I honestly believed to last month that ever single human had my wonderful abilities 🕊
Yikes I feel bad for the typically minded😢
Late or never I’m avoiding the normies in my family lol 😝
Rather live in harry potters world 🌎
I’m ok with anything now
I know it’s me too now
I’m happy to know both in real life society x
Enjoy your self 🪐
Thanks for articulating some of my common thoughts, the wall gets weaker, the will to fight diminishes, the desire to be alone gets stronger...
I'm already there! But I enjoy it as it's peaceful 👍🏻
Great video mate. I gave up trying to be what other ppl expected well before I got my diagnosis. I’ve been so much happier since I stopped trying to be something I’m not.
Good for you. Glad it's worked out.
I'm still me, but a version for the benefit for others. I'd love a happy medium at a minimum...just not possible unfortunately 👍🏻
Oh wow, you have described my life, I am currently going through diagnosis at age 52 and still trying to find my path, years of missed opportunities and fear, lack of understanding and getting situations wrong, not really wanting to bother with anyone and being forced into situations I feel incredibly uncomfortable with and the jobs, to many to count as I haven’t been able to gel with anyone or ‘get’ a lot of social language.
Thank you for this video, I read needed to hear such an honest account from someone who thinks and feels the same as me.
I am glad it resonated with you 👍🏻
Everything you said resonated so heavily with my own life experiences and thought processes that it hit me like a brick. As a 36 year old autistic who was just diagnosed 2 months ago, every youtube video on autism which I have seen thus far is exactly as you described. This is the first video I have come across where I felt the creator has actually had a similar life to my own and talks about life experiences that are substantive. Although I did share in those experiences and difficulties as well, there were more pressing challenges in my life and so I never gave much thought to what you referred to as "privileged problems" because they were so far on the backburner. Even though they were slow simmering for a long time and every now and then they would bubble over, the bigger issues always took the main focus and the most heat, but no one talks about those experiences in their videos. Your video helped make sense of that so thank you.
Really glad to hear it resonated. Thank you
I self diagnosed at age 65 after my 40 yr old daughter said that she thought she might be on the autism spectrum.
We both had our ah ha moment that explained so much of our struggles in life.
I was in counseling for another issue so I brought up the possibility that I may be autistic.
The counselor told me that if I was autistic ....at the age of 65... I had learned to function in the world with a high level of success so there is little benefit in seeking a proper diagnosis.
So.
Wow, what a terrible thing to say from the counselor!! For me personally, receiving the diagnosis helped me make sense of why I never fit in. It isn't about whether or not you just carry on, it's about getting an answer. Peace of mind.
Very interesting what you said. I am 55 diagnosed with adhd but going to the Autism Show, NEC last year blew my mind listening to ppl talk. Am thinking it is just living with it.
I find people are the deciding factor when it comes to being Autistic! 👍🏻
Thank you 👍🏻
I am 64 and visited a GP last week to be referred to a specialist and have a diagnosis. It was all ”what do you a diagnosis for at that age? If you have coped without for so long?” Coped???? Really. All those lost years, feeling like an alien, shut out, being depressed. She said she will consult another doctor and then make a decision. I don’t think I get that specialist. I feel I am doubly betrayed. Not getting a diagnosis as a child, because there was no knowledge then, not getting a diagnosis now, because I am too old and do not matter.
"if you got the headspace to worry about things that trivial, clearly you're doin alright"
I love this, my brain is constantly bombarded with literal nothingness in the form of personal requests and tasks that really no one needs to be burdening anyone with, they just need to take care of it. Yet it always turns out that for the menial tiny redundant tasks, I'm the person to do them. Wish people understood how much mental capacity it takes to fufill "can you take out the trash" or "can you clean this pan" as a question, rather than just letting the person notice it naturally throughout a day and giving the person the room to breathe and take care of tasks.
It's refreshing to hear someone talk about an experience i can relate to. Late djagnosed at 53, now 57 and have been told i am now more visibly autistic since diagnosis, to me that's a good thing. A fact people can't get their rouund is there will always be more autistic adults than autistic children, but most of those adults are not diagnosed. We are the feral autistic generation, we have the physical and mental scars, is it really too much to get a little help....apparently so. Weighted blankets should be sized as 10% of your body weight not by the size of your bed by the way.
Never knew that about the weighted blankets 👍🏻
This might be the most relatable video I've ever seen on the internet.
Many thanks
I’m glad you’re addressing the whole “support levels” versus high or low functioning thing. In the same way that autism and Asperger’s used to be different diagnoses, I think now people are seeing correlation between ADHD and Autism. In ten years they might not even call it “autism” at this rate. These labels and criteria and so on are just models. Not reality itself. They’re supposed to help, not create more division!
Very true.
My partner and I are both autistic, he was diagnosed as a child and i was diagnosed aged 27. We have completely opposed experiences on the whole early/late diagnosis situation, he hated how he was treated with his diagnosis through childhood and his teen years, always having people assume he was unable to do xyz because of his autism and being treated condescendingly by adults in his life, having help forced on him when he didn't need it because the assumption was just that he's useless. He wishes sometimes that he wasn't diagnosed at all and was instead left to his own devices to find ways to cope that worked for him rather than being treated like he's incapable of anything and also being treated like he doesn't understand his own feelings (this is a big one with his parents, it borders on gaslighting the way they will straight up tell him he isnt actually feeling xyz, hes just confused, because autism. He *actually* feels whatever they think he feels because they know better, because neurotypical)
Me on the other hand, I relate HEAVILY with this video, I feel like a complete failure in like being close to 30 and never having been able to hold down a job. College took 3 tries before I scraped by with a pass in my 3rd college, I dropped out of the other 2 after meltdowns I thought were panic attacks. I never graduated uni, I couldn't ever cope with trying to keep up with education and everything else going on in life, I never understood why, I just had to deal with it and I never understood why it was so easy for everyone else and I had to work so hard just to barely cope and still end up with nothing to show for it. I would have loved to get the support in these settings but instead I was just told I'm lazy, smart and "talented" but lazy, and that I was just hurting myself by not working hard enough.
We just had a baby 2 months ago, it's been interesting having discussions with him about how we'd go about a lot of things if our daughter starts showing any signs of autism. We both agree a diagnosis will be useful but had to have a long talk about how school will go as we both had such different and difficult experiences, so far we've settled that if she is high functioning like us, we will get her into a regular school and ask what support is available, the condition my partner has for this is that the support be discreet and not a very obvious entirely for her benefit extra member of staff constantly making her feel stupid like he had.
Anyway, I am happy youtube recommended me this video, I also feel like an outsider in autistic communities and did feel that initial sigh of relief when diagnosed but shortly after also felt completely lost with no support because "well you've made it to 27 without needing it". I lost my job a few months after my diagnosis, for the same reason I lose every other job, I'm too slow and methodical with whatever I'm doing. I get no support or sympathy from neurotypicals when talking about this, "just get into a different industry" yeah, tried that 3 times still the same complaint from managers, "just go back to uni" yeah, as if me, being unable to keep a job, can afford that 🙄. I've ended up once again just being told my problem is laziness, I mention my diagnosis and am treated like I'm lying or making excuses because I wasn't diagnosed as a child.
There's no winning, they just don't want to accept high functioning autistic people need unique support. They see that you're able to talk and take care of yourself and presume the autism diagnosis is just for fun, we're just "normal" and the autism doesn't affect us, its tiring.
That's really interesting. Two different sides with the late and early diagnosis, and now with a child and finding the right plan moving forward as she develops. I might be doing interviews in the future, would you and your partner be interested? If so, email me. If not, then no problem at all.
@@AdultwithAutism I definitely would be, I'm unsure if he would be also but I will mention it and see. Where can I find your email? (apologies if its in a really obvious place and I'm just being blind!)
No worries. It's in the descriptions of the videos.
Dang. That comment hit. Thank you for sharing your own and your husband's experience, as well as your child's possibility.
Hello
I am coming up to 63 and have had struggles like yours. Only recently have I realised that I must be autistic and I am experiencing relief and anger and trauma in equal measure right now. I am going to try and get an official diagnosis asap although whether that will lead me to finding anything to help me with the rest of my life I don't know. Right now I want to punch every mental health "expert" I've seen, both private and NHS for being so ignorant and for making me feel worse about myself.
I was super lucky in falling into a job which played to all my strengths and abilities and asked very little of me that I found puzzling or impossible. This covered me from my late 20s to my early 40s. I haven't worked for 20 years but on leaving work on medical grounds (depression) I got a pension which has made my life OK. That said, I am aware of having incapacity benefit removed and also the amount of money I have spent on trying to figure out what's wrong with me and in purchasing my substances of "self-medication".
I know I am going to face scepticism re being autistic. That is a problem when one is relatively high functioning I think. I have a sense of humour (a good one), never lacked friends, look people in the eye blah blah. I don't conform to the autism stereotype that is always described but I know now, from a squillion other things that I am on the spectrum. Your comments are so interesting. Like you, I wish someone had identified me as autistic when I was a kid so that I could have had support and insight re my brain functioning. I was obviously too good at some things and was going to be utterly hopeless at others but I was really good at the 3 Rs which in my generation made me super-pupil. SO CLEVER! Sigh.
Sorry to unload on you but I had to pick on someone.
X
Your comment about feeling out of sync with others, and things that others like, it hit me to the core. This is literally the best way to describe the struggle internally to be human with this condition. Thank you for the insight.
You're more than welcome 👍🏻
❤
Not sure what happened to my original comment, maybe that I mentioned a company I bought a weighted blanket from?
Aaaaanyway, probably my favourite video you've done so far Paul! Wont lie, it gave me a lump in my throat by the end as you are explaining perfectly my own feelings and some experiences that I can never articulate and others rarely talk about. Thank you for this, it's nice to hear it out loud. The wall getting weaker as you get older is so very true. I was confused but trying (youth), resigned, tired, fatigued...and now I'm just bone achingly tired on a good day and so fatigued I lose my voice on a bad day. I'm 37 and didn't know autism even existed until 3 years ago. As someone else in the comments said, I hope this goes viral. I think it will help others feel less alienated.
Haha, well at least you know I didn't delete it! I'm just glad any video relates for anyone at all.
I'm like you, I didn't know about Autism when I was actually diagnosed, so I had a lot of learning to do. It's actually what brought me to YT as I didn't find anyone who had made more than 5 videos I could relate to. It's why I've done more than anyone actually wants...just in case a topic is relevant!
I'm old, so the term viral to me sounds like a transmissible disease! 😂 But I've no idea how to make the video more visible.
I was also late diagnosed, I was 47. I totally relate to what you say about not fitting in even with Autistic groups. I have been kicked out of Autistic groups because I also think differently than many Autistic people especially younger ones like you said. I think many of us experience a unique type of isolation where we can't connect deeply with anyone, including other Autistic people around us
Thank you for making this video
You're welcome.
For many 'communities', they don't even realise how unwelcoming and unforgiving they are.
@@AdultwithAutism Yes, it's actually really sad and even pathetic!
I only got my dx at 59. The pro who tested me told my family there was no therapy, nothing to be done about it. That didn't sit well with them. But moving to a place where I was more accepted as I was, has helped me recover from the homegrown ABA I was subjected to next, unrelentingly.😢
@@AdultwithAutismi was diagnosed in 2020 with autism. I am 52 now. I have tried an autistic group but I just didn't fit in. They would spend the whole first hour of the zoom call just talking about where they wanted to meet in person - that was all they cared about. And having MCAS and these allergies I cannot go to those places. I react to perfume + food smells (corn allergy + celiac so I react to any place that is cooking grain) and air freshener, etc. When I would try to explain these issues they just stared at me like deer in headlights. Plus the majority of them were diagnosed as kids. I just didn't fit in. One time I tried to attend one of their in person get-togethers on zoom. It was for 2 hours. I could watch them walking around the room through the computer screen, eating snacks + playing various games. Well those snacks would have been a threat for me as most contain corn or grain. I wouldn't be able to touch the game anyway if I was there. But I was ignored. Someone only talked to me for 5 minutes at the very beginning and for another 5 minutes at the very end. But during the majority of the party I was just ignored + forgotten. Just like I was back in school. I don't fit in with them either. They just don't understand these allergies that rule my life. I cannot go to the library anymore as the hand sanitizer that everyone is using makes my eyes burn, my larynx starts hurting and I get itchy. Then if I stay there I get breathing issues. Air freshener gives me horrid brain fog and can mess up my balance (Pots). If spray type air freshener I get a swollen red face + other reactions. I react to cooking fumes + perfume outside. Maybe I have these severe issues because I have C-PTSD a lifetime of trauma + neglect + abuse. But since the other group members do not have these issues they don't understand it. I am like a strange alien to them. And they just want to meet together to have fun + go to the mall's food court + play games while they snack. And that is exactly the kind of place I cannot go... I have hEDS too. I have my own apartment and from what I recall most of them didn't. I also ride horses. That is one of my topics: horses. And they are horseless of course. I guess I am trying to say that a 52 year old woman has nothing in common with 20+ year olds. And I am unsure how many of them have this severe trauma background. But I just didn't fit in. On a 2 hour call I was only able to say something for 5 minutes. Mostly it was just sitting + listening to things that didn't even apply to me at all. Like the whole first hour was them talking about "where should we meet".
I really do not connect with people on various websites either.
i was born 1974. diagnosed only in 2019 though my father thought so but there was nothing that could be done. 100% agree with your assessment on a lost youth, just never having found a place. i too have been jobless, never had a dream of what i want to do or be--just never been a part of my mindset. broken family, 100% misunderstood. told i am depressed but i am not sure--maybe it's just still not fitting in.
It's tough to get so far in life, to then be told something you had no idea about. Makes you question who you are, it takes a long time to find that answer too 👍🏻
Being an adolescent... Struggling with the normal things of that time, and then all this on top of it. Some flippant adult tells you "just be yourself!". The restraint to not slam this person to the floor with your hands around their throat... To scream in their ear at the top if your lungs... The last %#&#!×& thing in the WORLD i can afford to be is MYSELF. I hear feel your pain brother. The 70s were a miserable time to be a kid on the outside. Whenever I see someone getting a taste of great fortune, one that I never had and never will have... My first thought is "yeah, life's fair". Then I think of kids in poverty, starvation, war zones around the world... And that I am not them either. No. It's not fair. Never was, never will be. We take the balls we have and run with them as best we can. That's all there is.
Yep. Have to do the best with what we've got. If we wait for it to get better, we'll waste the rest of the life we have 👍🏻
I appreciate the sharing of your experiences and standing up for yourself. I’m 64 and self-diagnosed and have an appointment for an autism evaluation in July 2024. Some have asked me “why? You’re 64.” It’s never too late to discover what has made me tick all this years. I’ve never been able to understand why friends and family distance themselves from me. Why I have always attracted abusive people. Why I would be exhausted and out of sorts for days (sometimes for weeks) when I went to a social event that was supposed to be fun but I couldn’t wait to get out of there. And my absolute intense energy and excitement over my interests and hobbies. I’ve been called boring, odd, quirky, strange, stubborn, and weird.
Really relating to this video....I was diagnosed at 53,almost two years ago...and still trying to get a therapist.The diagnosis has been good and bad...validating,but I have much regret, anger and sadness about what my former years could have been.I am becoming more proud of it,however.I worked in direct care and advocacy for 32 years, but for the last few years have worked in easier, less utterly draining jobs.Music is my main therapy and love.Thanks for posting this,there is so much misinformation and ignorance out there, and this counters that! Peace,and stay strong.
I haven’t even gotten through the whole video and I’m just broken down in tears.. this really hit home for me. Thank you for making this video, I’m subscribing. I know it’s not my video or my words but damn I feel heard through watching this.. I relate so much that it’s overwhelming. I got diagnosed at 21. I’m now almost 23. The last few months I’ve been in complete burnout. Mixed with major depression and generalized anxiety I’ve been diagnosed with way before autism ever came into question. I just lost the motivation I guess to really live life.. Since I’m a bit later diagnosed than a lot of people as well, the people in my life like my family don’t really address my autism ever. I think they feel a bit uncomfortable maybe because they have this idea of what it looks like, and to them I just am normal person with severe anxiety and depression and go through spurts of time where I don’t get out of bed for months. Not out of laziness, because I promise I’m one of the hardest working 22 year olds I’ve met at least. But it gets so bad to the point where I don’t wanna live anymore and everybody is just wondering what’s went wrong with me, and question when they will just get the “old” me back. Idek who the old me is tbh, and the “old” me doesn’t know who she was either. I just did what everybody else did that seemed to be functioning well, with some intense empathy added into the mix. Somehow I just didn’t come off right to most people even then.. I’d get burnt out so quick. When people meet me they think I change and dislike me after so many months because that’s usually the time the depression, or burnout hits.. and I become a shell of myself until I finally bounce back just a little.. enough to be the me they want.. I’m trying to find myself and I thought the diagnosis would finally make me free from my problems because it was supposed to help me figure out who I am. But now I’m even more lost than before.. and it doesn’t help when even the councilors at school or people who are supposed to help those with disabilities are so quick to jump in when I talk about what I’m going through, just to try to disprove my diagnosis, or make my problems seem less than what they are, or knock it down to “just depression”, or “just adhd” or “just anxiety”…. But the autism diagnosis has seemed like my enemy lately. Because nobody believes me and wants to say my problems aren’t a result of autism, or tries to study my every move and response to determine in their mind if I’m autistic enough. I’m sorry I’m rambling, I just wish people understood.. I wish I was understood for once in my life.. and not misjudged or mistreated.. hardly ever has anybody actually tried to listen or understand or learn.. or want to..
Thank you again for sharing this.
Thank you for sharing, I know how you feel!
Thanks Paul! Another really relatable video. Diagnosed this year at 40. How might things have been different if I’d known? No way to know but I’m glad I know now 🙂
Thanks Marie. Exactly, it's good to know. It isn't about wishing to change what you can't, but how to adjust accordingly moving forward. Well, it was for me anyway!
I have been bullied all my life, at school and work. I have decided to work for myself now, and used my imagination to write child fiction now. My publisher is extremely supportive with my new diagnosis. Now I am petrified of the publicity. There are always challenges in our lives, more than what they call, normal.
I am 59 and was diagnosed Autistic with ADHD last year - I was NOT expecting to feel how I feel following that diagnosis - trauma, grief, rage. Thank you for sharing your story x
Hope you are feeling better one year on, and thank you 👍🏼
Loving the realness here...
Comments moved me to tears...
All this is soothing somehow... like two days after I watched something that made me realize cause I tick all the boxes at 53.
Like your voice too.
I relate to you so much. I’m recently diagnosed at 52. Thank you for talking about these dark feelings.
No problem at all 👍🏻
Bottom line, rarely does anybody actually care. They don't want to know. We get punished for 'coping', regardless the difficulties. It's indescribably exhausting
It really is. You nailed it with saying 'we get punished for coping'. The problem is, we don't have an audience who care about that.
In trying to change this attitude of society I’m an 41 yo Neurodiverse woman late diagnosed with ASD 1, ADHD Inattentive, Anxiety, Depression, PTSD and RSD
I do wonder what comorbidities I have. Not sure I'll ever find out. Maybe it's worth a video.
I'm pushing 50. I never considered that I was on the spectrum until my son was diagnosed. We kept getting reports from his school describing the odd behaviors and trouble he has. I assured my wife that the boy is fine. I was exactly the same at his age. I was evaluated for special education services in the mid 1980s and was told my iq is in the 99 percentile. I wasn't disabled, I was just very smart and odd. IDK what it means really. I navigate the world ok. I struggle in some areas but everyone has strengths and weaknesses. I'm rambling now but, sufficed to say, I can identify with your story .
Just turned 55. Lived my whole life how you are describing. Just hearing you describe it brings back so many bad memories. I don't see much point in getting a diagnosis at my age. I'm just slowly shutting down and shutting out. The way I see it, I'll only have to do this for another 20 years or so. It's nice to hear I'm not the only one, though. Cheers, mate.
I figured out when I was younger how to get a dopamine fix and/or fit in somewhat by making people laugh. I can flip a switch and make everybody in a room love me and want my attention. It feels like a job. A real acting job. Except everybody in the room is left feeling better about their day, and I am completely zonked at the end of it. I need to decompress like crazy! But I can do it. That’s how I have survived all of these years. Make peoples’ a little bit better.
I don’t really think I am social at all, except for the few people I’ve met who can go on and on about a science or business project they’re working on. I eat it up! I get so excited for projects and novel ideas.
As they are speaking, I am thinking of all of the problems that may come up and solving them. I have often said I want to be a professional problem solver. That is where I feel my best. Coming up with solutions for other people to work on. 😂
That sounds very familiar! 👍🏻
I’m grateful for the internet bringing us all together, makes me feel less alone in the world. Maybe we should start a neurodivergent think tank to put our excellent problem solving (algorithms) skills to good work
I prepare for everything!
When I am out and about I start going through flashes of anxiety in my mind about what I would do if this or that would happen and what I would do.
I can rarely just enjoy the moment.
Always on high alert.
Yep, never an option to go on Auto Pilot. I know what you mean.
Thank you so much for this Paul. You are right we need to understand that there are different experiences within the autistic community and your video has definitely done this.
I can relate to the anxiety you are experiencing and the details that you describe are really important.
You are doing a great thing in getting us to see “out of the box”( on the autistic spectrum community ).
Will be interested to watch more of your videos. Take good care and wish you well.
Thank you for your nice words, definitely appreciated 😁
Awesome video brother I feel ya. I'm 46 and homeless living in my car. I have lost a ton of jobs and relationships and never knew why. I don't seem to fit in anywhere and feel totally overwhelmed by life. Thank you for sharing your feelings, thoughts and struggles. It takes courage to share your experiences. God bless you.
Best of luck to you mate.
I'm 62, diagnosed 2 years ago. Homeless twice, lost jobs plenty of times. Few friends. This video hit home!
I’ve been diagnosed this year at age 67. I grieve the life not lived💔
Same with me. 62 years old; diagnosed 2 years ago. Life has always been a struggle.
You had me at 13:01. “Ive been fake forever for your benefit”. That hit so deep. Subscribed 👍
I am glad i found your channel , its is hard being a high functioning autistic and Asperger's as well..... I am 59 and have only came to the realization that i am a high functioning autistic/Aspie for the past year. A therapist suggested it a couple years ago but i didn't pay much attention to it until i met a young man (son of a woman i tried miserably and for the LAST time to have a relationship with ) that asked me me if I was "On the spectrum" ... hadn't a clue at the time what he was talking about . A year's worth of reflecting and i DID have that revelation of holy crap , my entire life explained ! ....... But it has cost me every relationship i have ever had including the love of my life and some of the best friends i had ever known....... Navy career , jobs , Including ones like building high end kitchens after i slowly realized i HAD to work alone , but yet even that I lost because I still had to deal with people and i just cant. My best friend in life that ive lost told me once , " You are allergic to stupid people" and that fits so perfectly !!! I Have always known i was different and in 8th grade a science teacher realized i WAS different and brilliant , soon after after multiple tests they discovered i had a genius IQ . That has really served me well ! I say sarcastically .... Lost everything including jobs , relationships and homes . I was technically homeless for a couple years and intentionally orphaned myself from blood family because of complete unacceptance even after trying for decades to tell them i was different , that my mind didn't seem to work how there's did but all they hear me saying is " I AM A GENIUS " which i wasn't saying at all. Even after my unofficial diagnosis i received nothing but more of the same .....
well, a way too damn long rant already shorter , I now own my own home and shop ( paid in full , nut needs tons of work that's easy for me" where i build custom live edge furniture and never really have to deal with others , just me and my dog. Plus side of Asperger's/high functioning autistic for me is that I can do pretty much anything i want to and to perfection..... but the cost is high as we all know .
I didn't think i would find others like me ( late adult diagnosed ) in a world where we are already are so alone .
Shit this got long , especially when i mostly wanted to share about that there is a ton of research about natural derivates from mushrooms (read between the lines ) that definitely show promise in helping us , especially long term depression benefits and i will find out , I went from a 185# fit martial artist in what seems like overnight to a 145# husk of myself because of a snowball effect of depression and i WILL get the old me back but improved mentally , perhaps even teach it again , free of charge like before.....
I apologize for the rant
No apology necessary 👍🏻
Listening at 2am and agreeing to 99% of what you're saying. A female, diagnosed w ASD at 60+ ( ADHD diagnosis at 40÷) my life has been full of heartache and regrets. People think of me as "well adjusted and dependable" ... they don't see the grief, time & financial expense I put myself through to show up as "normal*
Glad there are some points to agree on...even at 2am!
Very well said and relatable. ❤
I'm 55, and I'm halfway through an ASD investigation. If I get a diagnosis, it'll answer so much. Life has been hard.
Update: I am officially part of the ADS community.
My life at last makes sense.
Welcome. Hope your diagnosis helped 👍🏻
@@AdultwithAutism Thank you,. An official diagnosis has explained everything and I feel like I'm walking on air,
First 5 seconds I knew I finally found the video I could connect to. Thank you. I didn’t feel any different when I was diagnosed… I felt the same.. it didn’t answer questions.
Then I go to the internet to figure it out, and I end up watching people being physically guided through an already guided dance.
To me, the "dark side" of Autism, was the pre-Dx side.
Because of all the harmful misdiagnoses I found out were completely invalid.
I was THRILLED to find out that's all it was. Some narcissistic family members, who chose to use me as a scapegoat, absolutely HATE that I now know exactly what it is, because I no longer beat myself up, for the symptoms that "annoy" them.... and because of that, I'm mostly happy, most of the time.
I have noticed, although I have been in denial about it for so long, I don't have the same strength to keep my masks up as I used to. It didn't take long after my retirement for my social skills to begin to atrophy! It's a real challenge at every social event, especially around people I care about! I'm always fearful that when my authentic self comes out, it weirds people out!
44 and just diagnosed this month. And I have BPD as well. Was misdiagnosed bi-polar a decade ago. Was kicked out and homeless from 13-18 in the 90s where I was jumped at least weekly and on so many drugs daily. Had a malignant, narcissist stepfather and poor farm girl mother. I’m a white dude in the USA so no one cares.
Love ya bro thanks for the video helps me accept the truth when I hear others explain how it is for them. ❤
I just tell people I am a INTP only told my cousin the truth so far.
Glad the video was useful. Sometimes good just knowing someone else 'gets it' 👍🏻
Wow, that was like hearing myself speak. So much identification with the content of this video, really validating & just what I needed to hear. Thank You
Thank you
Admitting you have always struggled with things with a late diagnosis isn't something people can comprehend. In my case people have normalized the things i have identified in what seems to be an effort to discredit the struggle I've hidden. I appreciate how strait forward you are. Thank you
Guess i can't edit on this device but should add that maybe i don't explain well enough. It's hard to describe what is difficult when you don't know
exactly what it was
I know what you mean. It is like someone saying 'the answer is 36'...erm, okay? But, what was the question? What am I supposed to get from the answer when we need to figure out how we got here 👍🏼
37. Haven't had an official diagnosis, but, have taken myriad online tests all coming back as strong probability, have been deep diving the dsm-5 and videos like this and other resources; everything you are saying hits home way too hard with me. I am also currently struggling with insomnia, recently had a minor heart attack, and have just been through it. But, holy crap your words sound like my life. A lifetime of acting. Absolutely understand this, brotha. It had been an interesting couple of months coming to this realization.
Hope your journey stays good to you 👍🏻
Hi there! This is the first time I’ve ever commented on a video. I actually watched this an hour ago but needed to come back and comment because I connected with what you were saying so much that I actually cried a few times whilst watching.
Im 27 and realised I was autistic a few weeks ago and have since then been researching non-stop about it. I am going to start the formal assessment next month. Plus I also suspect I have alexthymia so watching videos and researching helps me better understand myself and the aftermath of the realisation.
Everything you said about acting, trauma and how to carry on afterwards made me cry so much. You made me realise how much pain I had been carrying due to all that trauma. Also, you are the first person I’ve come across that mentions anything like “maybe I don’t have to do that anymore” that freeing feeling of I can just be myself now. I don’t need to do any of that anymore. “Take my foot off the gas and be a bit more me”.
You saying that healed something in me that I didn’t know I needed healing or even know I needed to hear. No one else knows how it all feels and you can’t just talk about to anyone because they won’t understand completely. Plus everyone’s experience is different but you explained my situation and life perfectly. I’m so glad I found your video and that you are able to communicate what I cannot. I really have no words to describe just how much this video has impacted me and my healing. 😭🙏🏼 Thank you!
Thank you forbyour kind words, and I'm moved that it was able to help you in that way.
Thank you bro!!!! All the way from America, THANK YOU. Everything you’ve said in this video has literally been me, it’s like you’re speaking for me, and saying all the things I wanted to say, but didn’t really know how to say, oh, when I said them, people really didn’t listen to me, you understand what I was trying to say. It’s so weird to me how you are so much like me yet we look nothing alike, but we’re so much alike inside and in spirit, just know you’re not alone, bro, like I now know that I’m not alone.
Really glad this spoke for you. Really am 👍🏼
I’m 55 & self diagnosed at 50, explained everything. I FINALLY understood my whole life and experiences. Thank you for sharing this. It’s is EXACTLY how it is. Imagine 15 more years of not knowing. Even to be diagnosed or realize what is going on at 34, like you, would have changed soooo much for me. At this point how do I change what I’ve carved out and built my life around? So much clean up to do and self love to realize. So much I have to learn moving forward.
No problem at all, and I hope your journey is a fruitful one 👍🏻
this was the best description of the fear i have of 'if im diagnosed will anything actually be different or is it just a piece of paper'. thanks mate
Thank you
When I was first diagnosed at 45 with Autism still my IQ was higher case workers suddenly told me I needed caretakers and social training like a 5 year old. They don’t refer me as a “you”person or acknowledge your you they talk to loved ones as a “he”and don’t respect me as a person and ignores me when I speak my voice and frustrationHorrible. I agree with your video 100%.
Hi Paul! ❤️ I sooo get all of it! Im a nurse, work in psychiatry. I am sure I have high functioning autism, doctors said I might, buy I have a job so no need for an evaluation. 🤣🤣🤣
Ive become reclusive to that same level. Nothing is worth getting out the door for weeks. Im on sick leave now otherwise Id just make it to work, survive and get back home.
Im so tired of the mask, I cant waste my energy pretending that I care about trivial nonsense. Ive become sooo negative and yet, sooo happy and at peace in my reclusion.
Your video makes me feel so good right now. Its ok to be me, even if nobody likes it.
Big hug from Sweden. 🥰
Hi Berenice.
Like you, I'm fine with my reclusive nature. The worst thing i have to deal with is other people who don't understand why I enjoy it! 👍🏻
@@AdultwithAutismit’s like a need I think. And going out and being out in the world has a big big energy drain- even when you have a day. You manage it well. So maybe if the withdrawal part is seen as good, it can be more refreshing. Imagine having 10 people in a room together and they all really like to drink a cup of tea- and some came in and gave everyone the exact same tea- same strength, amount of milk and sugar. That’s not going to work…
I hear you on this. Part of me really wishes I personally had an early diagnosis at least for my own knowledge. But at the same time know that if my school or family had that "label" to slap on me in the 80s I would have been relegated to "special" classes instead of gifted. It was really a different time and understanding (or complete lack thereof). Nothing would have been expected of me and I wouldnt have built the coping abilities i have. But also If I had known myself and not had so much self-hate and self-judgement for my struggle.
I think about it often, an early or later diagnosis. I prefer my late diagnosis because even though it was hard, I was forced to try. Even though a lot say that caused trauma for them, for me it helped me know where my real line of struggle is.
Same 💜
👍🏻
Last 4-5 minutes really hit home.. I’m getting ever more reclusive and very rarely find motivation(apart from work and walking dogs) to leave the house .. insomnia is present - decided early on that I knew having kids just wasn’t in the cards for me .. serious relationships just seem impossible and casual friendships are confusing and require too much energy. I’m left wondering what is there for people like us? I honestly don’t know
We just need to do what we need to do, based off our design. Respond to our environment accordingly. If people don't get it or like it, we just don't go near those people again. It's a shame, but it isn't us who is setting out to upset others, others just hone in on us and make our contentment a hobby of theirs to destroy for some reason.
Brian, you're not alone. I am aware that I too am becoming more of a hermit as I age. I work (self-employed) but apart from seeing clients I do not want to engage with anyone else for whatever reason 'in real life'. I have too have my dogs and am finding that online connections with faceless unknown people is enough for me now. I am so thankful for channels like this, and also that I was born at a time when the internet exists and the world is freely available through my keyboard.
Thank you 👍🏻
I like to get out of the house to walk. But i dont enjoy human interaction too much. And i go to Church. I wish i had a dog again. I love dogs. But im struggling with auto immune disease...need to become more stable health wise. But i understand what you mean. Especially in relationships...my sentivities and boundaries were never respected. Then i meltdown. Then they call me crazy b. Real life for me.
Dogs are the best...and also very annoying. But amazing distractions. Sorry to hear you cannot have one at present. I hope that can change in the future.
im glad i found your video 30 seconds in its so true! your not aloud to be negative anymore but the world is a mess now i agree. I've only just been diagnosed at 26 and im so happy now because i agree... theres alot of people on the internet who have autism yet i cant relate but i can relate to you. I have always found it hard to look and people and listen and i hate the inner feeling in me its 'i dont really care' but me not caring makes me feel bad but i dont!
Glad you found it too 👍🏻
I can relate so much. At almost 60 it's pointless to get a diagnosis with the cost involved. I've had social anxiety and regular anxiety all my life. Due to my melt downs they labeled me as having hysterics as a child, all it did was teach me to hold it in until I'm at home. I got tired of the mask, so I just don't leave home unless I have to. I don't have in real life friends, just internet ones where I can edit what I say before I say it. I avoid the phone and will text instead when possible. Bluntly I just don't talk about it and try to stay out of places that I need that mask.
The most important thing is you are not alone, there are a lot of us out here who don't fit in to either the normals or the spectrums.
One way to explain "but you've coped ok till now, what changed" is:
If you didn't know you had a disease, say a spine problem, and just soldiered on, suffering the ocassional pains and thinking "this is normal, everybody gets those sometimes".
Wouldn't you want support when you did found out that, "no actually this isn't normal"? Wouldn't you want drugs and some possible accomondations?
Or would you just continue harming your body, worsening your condition, and working harder than others in good health to get the same results, just because you got this far while being oblivious to your problem?
Good point. It's trying to have people understand that it isn't about how much help of assistance can be offered. It's when. When it's needed, it's really needed. Because it has an ebb and flow, I either need next to nothing or everything. This is something I've found health professionals I've dealt have hit a stumbling block with.
Can relate to what your saying, I was diagnosed this year at 52 .everything you said is how I feel think
Sometimes good to just know you're not on your own thinking in certain ways 👍🏻
Love your videos keep doing them they’re a help to me and others
So long as there are topics to cover, I'll keep doing them. Thanks Gary.
Has it been overall beneficial to receive the diagnosis? I ask because I have taken many self-assessments that point towards me being on the spectrum, but I’m 53. My kids are grown, I’m married to a wonderful spouse. But, if I can get relief for meltdowns and burnout, I’ll keep being curious. I’m typing this as I listen. I hear him saying the validation helps. So I’m asking you, would you go through diagnosis again, if you could choose from your current perspective?
I feel that. Don't get other autistic people officially diagnosed when they were young. Got diagnosed with 28 - recently.
Tried to join communities online - but I felt like an alien from another solar system hanging around with aliens from Neptun.
It really is like talking a different language. I also think the life experiences we go through change us and alter our natural course with masking...so when we finally get diagnosed, we have to learn who we are before we reach out to others. But it's harder to connect as we are all trying to learn who we are underneath a lifetime of masking.
My doc says, that I / WE, are very special, that us highly functional’s, see through the world in a authentic way! Why, b/c we had to be self aware and ALWAYS LOOKING INTERNALLY! To fix ourselves, mask ourselves and behave accordingly! Futhermore, the rest of the world are not even capable, of looking within themselves! We can! He says, they want fluffy stories, that make them “feeling good”. Where we want facts, truth, and honesty. They want f-ing stories to avoid, being honest. I am sorry, for the pain u have endured, I totally, feel u, b/c I feel ur pain, b/c I have lived in those exact pains! I really do, so much! I understand not to be able to be just me, everything u talked about I experience too. I got my diagnoesed this past June! I am 43, and there is no consensus, no understanding. Of how hard of a life we have suffered, Its a hard existence, my mom asked me, genuinely, why cant u just put ur “mask” back on? I I told her, it doesn’t work like that. They will not go back on, b/c I am trying to embrace who I am. Not pretend anymore. No one around me understand, that I have always needed help, support, acceptance, understanding and freedom. Not b/c I am helpless, but because there is no room for me in this world! They can’t comprehend . That I just need to be me, without being judged for who I am. I am highly functional, b/c I had to, for survival! Nurotypical’s may feel we are the disfunctional ones. When in fact, high functional’s , have superior intellect ( and I am not being egotistical, simply factual!) and we are way more evolved humans. Who see through all the fucking bullshit! I see u! Hear u ! And feel u! U are not alone! We my friend, are fuckin rebels, system busters, we don’t “conform” or “follow”. It is not, and will never be, in our true nature. We are those whom, refuse to conform, for the easy of others. Others, whom do not have the capacity to look beyond the superficial, and see authenticity. Sending u soo much love and light!
“I’ve been fake forever for your benefit, and now I just want to be me.” Resonates deeply. You are loved as you are by a stranger on the internet.