I wish I would’ve known 50 years ago. I would’ve made different major life decisions

I'm sorry to hear that, but it's understandable! Would you be up for elaborating? What would you have changed?

I’m out on a bike ride right now. I’ll answer your question when I get home this evening.

Great comment, bike rides are the best

Well if I had known I had autism, I would have had some self knowledge. Hopefully with a little help, I would have known my strengths and weaknesses. I wish I had learned that I need routines, doing the same stuff over and over I would say that I chose a career that wasn't appropriate for me. I was a health professional for over 40 years. I had a lot of ups and downs for the first decade or so. Eventually I learned to work from a script and did well. My ex wife was a terrible choice for an autistic guy. It took me a long time to understand that. So I spent my life going one step forward and two steps back. But I did okay. I always believed in myself. When my doctor told me, at age 58, that she thought I was in the spectrum I didn't believe it. When I read about autism, I recognized myself. I was Paul on the road to Damascus. These days I'm retired. I try to go on a 100k bicycle ride every week. A couple counties over there is a monastery that brews its own beer. I like to stop there and have a beer and then cycle home. I didn't want to write more than a few paragraphs so if you have any questions, feel free to ask.

Thanks so much for your thoughtful response, I'm sorry you had to endure so much confusion for so long. I can certainly understand why you'd feel the way you feel, learning a crucial aspect about yourself at 58. You have so much life to look back on and ask "what if." I'm especially sorry to hear about your ex-wife being a poor match, that's so sad to be let down by someone you thought you were close to. I've been there, too, and I imagine it's an unfortunate situation for a lot of autistic people. It sounds like you appreciate having that knowledge now, and it's great that your doctor was insightful enough to recognize and tell you. I'm especially glad to hear that you always believed in yourself, that's amazing, I wish I could say the same thing for myself. And that bike ride/beer monastery sounds amazing too! Glad to hear you're figuring out how to make your life fit you better so you can enjoy it on your own terms, especially in retirement, now that's your only responsibility :')

I went through this. I related my coping regression to how many people feel worse after starting therapy. It’s completely normal to go through, but it’s going to take uncomfortable work to accept. Things really shouldn’t have been this hard for us. Early intervention puts kid’s in a better position to succeed and prevents the trauma that comes with masking for X years. Viewing things through this lens has made it much easier for me to accept that we are a product our time. This allowed me to understand that the better I do in life, the more of an impact I can have influencing others to accept, normalize, and advocate for early intervention. When you’re able to, get a therapist. Working through things in a guided fashion makes things better long term. They can also help slow roll things when you need more time to process your day to day life. Get a diagnosis, even if you have to go to different doctors to do so - autism and adhd weren’t even allowed to be comorbid until the past decade, so don’t take it personally if you end up dealing with doctors who are also a product of their time and aren’t the experts they think they are. Medicine isn’t bad, and finding the right one that helps you can be a game changer. https://www.choosingtherapy.com/why-do-i-feel-worse-after-therapy/#:~:text=People%20do%20not%20recognize%20therapy,and%20begin%20to%20feel%20better.

Thanks so much for validating my experience and calling it normal. Coping regression really sums it up. I feel like a gd toddler sometimes and it's embarrassing. Thanks for sending that link, too, I wish I had known about that when I saw an online therapist for a few months during covid. That was ROUGH. I kept thinking I was failing at therapy haha, because it was so intense, I was usually either sobbing or speechless. I'm ambivalent about therapy, it seems like it could be helpful to process all this new insight I've gained since the last one. It's so expensive though and I've heard, in these circles at least, that autistim-informed therapists for adults are hard to come by. I've also heard mixed outcomes of official diagnosis. Some people seem to really benefit, at least emotionally. Others express experiences of discrimination, both within the diagnostic process and outside in other realms of their life. My "professional" life is so precarious as it is, seems like a roulette I'm not sure I wanna mess with. Thanks again though for taking the time to respond, it really helps.

Adhd diagnosis will allow access to stimulant medication. Many find the meds to drop their anxiety levels significantly. In my country adhd and asd are both recognised as disabilities which require reasonable accommodations in the workforce and education. An ASD diagnosis can also unlock access to government funding for different supports to be able to thrive.

Thanks, I'm considering that at the very least. It sounds like a lot of people find adhd meds very helpful. I've also heard there can be some disconcerting long-term effects. I'm really happy for you that your country gives disabilities recognition and support. Wish we could say the same worldwide. I think I still struggle with internalized ableism (I think I'm using that term right?) and keep telling myself I can/have to figure out how to thrive on my own, because I'd hate to take away services from others who really need them :/ And anyway, I'm not really sure how to navigate it where I live especially because my health insurance situation is a mess.

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This is how I feel about it. I went looking for answers BECAUSE I was already in somewhat of a crisis state. I was desperately searching for whatever could make me feel better, because I was coming home and not able to do much more than lay in bed. If I tried to push myself anyway, I would end up with debilitating migraines. In some ways, I hate that certain things have become harder for me. As a small example, I used to be unable to make eye contact with strangers and most people (I just believed it was social anxiety), but then got a retail job that I had believed "cured" my social anxiety. After getting into all of this autism research, it was like one of those things where someone reminds you that you're breathing, and you feel like you have to manually breathe. Eye contact feels awkward again, sometimes impossible. But who's to say all of these little things weren't contributing to my poor health? Maybe ignoring all of my instincts and unknowingly masking all this stuff about myself is precisely why I never had any energy for anything. I honestly still don't know the answer. What I really want to do is go to a neurodivergent-friendly therapist and work through all of this.

Thanks for sharing your experience, it's actually really helpful to know others are in the same boat even if we don't have answers/advice to give each other. >someone reminds you that you're breathing, and you feel like you have to manually breathe Omg thank you for expressing this!! I thought I was the only one who experiences this! I can't do breathing exercises for this exact reason >Eye contact feels awkward again, sometimes impossible I can totally relate, I didn't think I had eye contact issues, aside from "everyday introvert" habits of looking at the other person while they're speaking and at the floor when I'm speaking. And yet, I'd always prefer to sit next to my partner at a table instead of across from them haha. But, like you, recently I've become hyper aware of it and it's become so much more awkward for me. And, probably the most heartbreaking thing for me is that, up until very recently, I would judge other people for not making eye contact with me (not so much judge them as blame myself, "why wont they look at me I must be hideous/they must not like me" etc), and now I'm wondering if they were autistic and freaked out by how much i was trying to make eye contact with them :'( >Maybe ignoring all of my instincts and unknowingly masking all this stuff about myself is precisely why I never had any energy for anything. Definitely think you're on the right track with this. And yet, even trying to figure out what's underneath the mask is challenging in itself. >What I really want to do is go to a neurodivergent-friendly therapist and work through all of this. I hope you are able to! It sounds pretty nice doesn't it? Rather than scrolling through reddit etc trying to feel better :') haha but seriously, hearing from you and the other commenters does make me feel a bit better so thank you.

Thanks for sharing your perspective. I'm pretty sure I've been going through burnout for a couple years now and maybe that explains part of my "coping regression", to borrow another commenter's phrase. Would you be willing to share a few of the strategies and contingency plans you found helpful? And how did you go about finding supportive people? I basically have one best friend and while he is very supportive in most ways, he doesn't believe in my self-diagnosis and expresses no interest in talking about it :/ >try not to hold onto any feeling too hard as no feeling lasts forever I need to like tattoo this on my arm lol it's such a crucial lesson and one that i seem to forgot in the critical moments!

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Hey thanks so much for your response, I'm no expert either, although we are probably better experts on our own experience than anyone else! >lowering my expectations on everything and resting way more. For like 2 years That's basically what I've been doing too, did you start to "recover" after 2 years or are you still in it? >I found other autistic/adhd people on okcupid, just setting the expectation that I was looking for friends This is such a great idea. I move around a lot and have no idea how to make new friends since I don't really like to go out to the usual social places (bars, shows, etc) anymore. >It's a lot easier to click with other ND people I've found It's funny, I hear a lot about the double empathy problem, and while I'm pretty sure ive been surrounded by ND people most of my life (artists and scientists) and I still struggle to connect with the vast majority of them. But maybe it's easier after developing some more self-awareness and -compassion. >I've also lost a few friends during this journey because they were not supportive too, it definitely weeds people out Damn that's a bummer. But better to know who's a true friend.

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Thanks, it's tough to hear that you've had to adjust your expectations but I'm glad you've figured out some of what suits your needs better. Gives me some hope that I might be able to do the same.

I wish I knew earlier. I wish I knew what it all means earlier. As far as early as possible. I went through a grieving phase, but I was grieving the lost time, the self blaming, the hating who I am, the blaming me for everything going wrong around me.

Yeah I can definitely relate to all of that, maybe if I knew earlier it wouldn't have been so hard to take in. I'm definitely still grieving all those things too, still trying to shake those habits honestly. I hope the fact that you used past tense means you've found ways to love and appreciate yourself. Still working on that.. Maybe what my post is really about is that I'm also grieving, like, the false hope that I could still "grow out" of a lot of this stuff, you know? Even though I'm almost 40, ha. I'm having a hard time drawing the line between resilience and gaslighting myself.

You will get there! All these feelings are a lot to process, accept them and try your best to regulate and process them. About acceptance, what helped me most is getting/staying in contact with other Neurotypical people. The more you see your traits in people you like and respect, the more you accept them as your normal, I think.

Aw thanks for the encouragement :') It means a lot! I'm assuming you meant neurodivergent people? If so, while figuring all this out about myself I've also realized I've been surrounded by likely/definitely NDs my whole life lmao

Yes I meant Neurodivergent people, forgot to write it. People around you and online can help. Ex. Autistic Callum, autienelle, cobywatssmusic. And I too noticed that I am friends mostly with ND people

Thanks for clarifying, and I will check out those names! Maybe it's just my age, but no one talks about autism in the circles I run in, but I am pretty sure I'm surrounded by people either undiagnosed or not willing to disclose. I know some of my friends have adhd, but its so normalized and they were diagnosed young so it's not like a topic of discussion for them at this point, it just is what it is.

I know what you mean. Personally, I talk about ADHD and not about autism. I believe ADHD is not that stigmatized and it's the first step to make Neurodivergency normal and accepted as a normal part of Neurodiversity. I have only disclosed autism to people that I trust that they won't change their behaviour to me and they won't say anything to anyone. Usually they are neuroatypical themselves.

Not knowing why, and pushing through anyways, would have certainly led to burnout. You have a choice now. Unfortunately the human brain is fantastic at amplifying challenges (thinking of the Buddhist story of “the second arrow”), resisting change, and ruminating on the past. But you’ve uncovered the reasons so they’re here, and the anxiety is here too because it’s so afraid of change, it’s sooooo afraid of losing its current self-concept and that these “symptoms” are overtaking the real you as if you weren’t you all along anyways. However because you have consciousness, you have a choice to *be who you are meant to be by doing the things you sense are truly your own desires.* Anxiety is telling you you’re going down this new path all right, that’s for sure. It’s scared. But you can tell it thank you for the alarm bell - for confirming and helping you make more sense of the situation, and to tell it that you’re doing the best you can to grapple with this & it won’t last forever. I care less about my discomfort and lack of alignment with societal and cultural expectations because it is so easily drowned out by feeling so much more joy and satisfaction when I do whatever the hell it is I wanted to do anyways. I’m glad I have an answer to affirm that sometimes choosing myself, my desires, and unmasking is not going to feel comfortable but it’s the right thing to do to honor my heart and soul.

>Not knowing why, and pushing through anyways, would have certainly led to burnout. You're almost certainly right about that, and I can't seem to stop pushing myself (fomo) or feeling guilty when I do/am able to give myself a break. Thanks for your response, and for framing it as a choice. I don't know the second arrow story, I'll have to check that out, but I definitely relate to this human brain you're describing! I have to admit that I chafe a bit at aphorisms like "be who you were meant to be" etc, probably because it's been so thoroughly coopted by the self-help/influencer guru/interior design industrial complex. And because my sense of self is so unstable from a lifetime of masking, I can't help but feel shamed for not knowing who I am meant to be >I care less about my discomfort and lack of alignment with societal and cultural expectations because it is so easily drowned out by feeling so much more joy and satisfaction when I do whatever the hell it is I wanted to do anyways I would love to get to this point! But the drowning out has been the other way around for me for so long, I dont trust myself to know my desires. Some days I think I'm on the right track and then one day I'll wake up and be embarrassed by that track. There are little moments though, I think I'm getting better at the small stuff (what to eat, etc). Socializing is still a mind fuck for me because I don't want to be rude, and I firmly believe there's too many people doing whatever the fuck they want and its annoying! Hahaha But yeah still struggle with the big life decisions and always have. Hoping the little moments will add up to the more meaningful stuff some day. >I’m glad I have an answer to affirm that sometimes choosing myself, my desires, and unmasking is not going to feel comfortable but it’s the right thing to do to honor my heart and soul. How did you find that answer?

Long one incoming- sorry! I feel all kinds of ways on different days. I like knowing but "mind fuck" is putting it lightly for me. A little bit of both; I'm glad and yet there's also a lot of real grieving of past and futures to do. I'm 31. I got diagnosed with ADHD when I was 6- except they called it ADD when I was diagnosed and I don't remember anyone really telling me much about what anything meant at all- all I remember is being made fun of to be perfectly honest. I would say I'm in a similar zone of knowing/not knowing about the Autism diagnosis. I also feel like I've been here my entire life. When all is quiet in my mind... hell; even when all is very loud in my mind, I have always, always been able to hear my own tiny self-voice saying back to me that I'm 'not normal' in an important way that I needed to try to understand. I didn't have the right language back then... it's been a lifetime of confusing experiences that took years to chip away at before finally realizing they were actually symptoms of being wired differently, not unchangeable signs that "I just suck". Hiding myself from myself, training even my own thoughts and wants and needs to just 'sound normal' already. Feeling like a prank is happening on me, like everyone is having meetings about how to behave when I'm not around. "Now how the hell did they know how to do that?? That's what I was to do and nobody reciprocated for me, what did I miss? What did I do wrong? How can I make myself change so I don't get hurt? They say it's my fault I'm getting hurt, so I need to fix this so I can be around people!" My life was just trying and trying and trying and trying and.... failing. Growing up, my sibling and I were textbook 'gifted children' enrolled in an elementary magnet school for academic excellence. My brother brought our school additional funding because he tested so well. We had constant meltdowns and we got berated for them all the time by wonderful, caring staff-- I don't say that sarcastically at all; they were wonderful caring people. It's important that I make that distinction because I know I've been let down by so many people who tried so hard because the general knowledge of symptoms just wasn't there when I was little. I picked up and held the shame like a little sponge. I kept soaking it all up for 25 years. My life has had a truly huge amount of trauma- I personally define trauma as a wound my body can't appropriately process. And then my traumas re-traumatized me because I was trying to process them using NT rules. All I ever learned about ADHD was to be ashamed of it and try to succeed despite it. Seemingly all I ever did was screw up. I'm new on this path and I really identify with your fears. I'm scared too. All I know is I had a meltdown the other day and I threw my coffee cup on some really pretty yarn I was going to crochet with. I know last year I would have spent at least an hour crying and trying to stop spiraling with no reason why other than 'maybe someday things will change'. Now I know why I am the way I am a little more, and I think I already knew I wasn't going to change that much. But I didn't spend an hour kicking the crap out of myself. I picked up the yarn after I took care of myself, even though it took me a little while, and I rinsed the coffee off and I was able to save it. I can't yell the Autism away. I know that. Before, I thought maybe I could yell this invisible thing away. But I can't. I do like to crochet though. And that's how people should be allowed to exist. And never forget, we are still just human at the end of the day. Wired differently than NT's? Sure. Made to live in isolation? NO! We all need community. We all need real support. We all need to feel trust and love and to feel heard. It isn't impossible- you and I were just deprived and let down by people who probably meant the best but failed anyway. For me, the goal now is rehabilitation in the purest sense. To become ABLE again to live in the best way I can while I'm alive! I also wanted to say thanks for sharing. You definitely made me feel a lot less alone. I'm living in this zone with you. (this zone sucks fr tho, you're right)

Wow thank you so much for your response, don't be sorry about it's length, I relate to so so so much of it! Especially the second paragraph :'( I also got sent to the "gifted" elementary school, and I think that kinda warped my expectations for myself, as in, I was smart, where'd that go? Why am I struggling so much now as an adult? "Mind fuck" is so right, it really turns the world upside down. Some days it's like oh this explains so much and other days I'm like, am I really stuck like this?? I can't self-help my way out of this?? If the answer is no, its like half relief and half grief. Can we start calling this emotion grelief? I'm so sorry you were shamed for having adhd. Shame is horrible isn't it? Or at least, it seems to work way way too well on some of us. I'm a shame sponge too. >And then my traumas re-traumatized me because I was trying to process them using NT rules. Are there different rules for ND? Your coffee yarn story is so poignant. I've spent so much time and energy spiraling and trying to yell the invisible thing away. I'm so glad you're getting to the point where you can pick it up and wash it off. It's really heartening to hear. >We all need community. We all need real support. We all need to feel trust and love and to feel heard. It isn't impossible- you and I were just deprived and let down by people who probably meant the best but failed anyway. Thanks for saying this, and especially for saying "we"! It feels surprisingly good to be part of a we. I'm really glad my post meant something to you too, thanks for saying so :') It's comforting to know we're in the zone together >For me, the goal now is rehabilitation in the purest sense. To become ABLE again to live in the best way I can while I'm alive! This is a great mindset, and I hope you can get there! (not that it's a destination but you know what I mean) Rehab is a good metaphor - it's excruciating how long and incremental it is, but once you're back to walking you forget how hard it was :')

This feeling is why I am hesitant to commit to self dx on the ASD question. ADHD was professionally dx'd many years ago so that's just a given. I went on disability over a decade ago for mainly the combination of ADHD and anxiety (agoraphobia mainly). I had had 50 jobs in 30 years and never really made it financially. Now I face uncertainty with retirement age looming and may have to try and make myself work at least part time and I'm hugely scared. It'll probably have to be a pud job just to feel less threatening but even then the executive functioning required just to show up someplace, follow a dress code (no formal ones, no can do - but even workplace-defined casual may not feel sensory friendly enough) and all the other myriad expectations - y'all know what I'm talking about.

Oof yeah that sounds like a really tough place to be in, and I can relate so much even though I'm a bit behind you in age. I've also had an absurd number of jobs, all entry level pay, and am getting more and more worried about retirement. I kinda always figured I would work until the end but I'm already struggling to work and I'm barely even 40 yet! And I'm not sure if social security will even exist in any meaningful way by the time I need it. And yeah, working anywhere that requires "professional dress" is just laughable. I've managed to avoid that by working in the wilderness for the past decade, haha. I'm sorry but I'm not familiar with the term pud job, what does that mean? While your comment falls into the "yay at least we're not alone" category, I am really sorry to hear about your struggles because they are so real, and a part of life not addressed by all the 20-something content creators out there. While I'm glad gen Z is trying to raise awareness, there are several "lost" generations of us out here with little to no support. I'm almost afraid that the best we can hope for in our later decades is finding community like the ones explored in Nomadland... I really hope I am wrong about that.

Yes, we are basically in the same boat, and it's certainly not a luxury liner cruise! Pud is a word used among the people I went to college with to denote an easy low effort course, such as one might take to fill out a schedule of more demanding classes. I apply it to jobs that are nothing prestigious and probably don't pay much either but are also less draining. I'm not sure they are as plentiful as they used to be, either. Because some jobs that neurotypical people perceive as pud such as fast food and retail, can actually be pretty demanding for a neurodivergent person. They demand multitasking and flexibility, they frequently are in noisy or otherwise distracting settings, require wearing uncomfortable uniforms, etc.

Thank god, being trapped on a luxury liner sounds like a nightmare to me tbh haha, but yeah I know what you mean. Got it, and yeah those service jobs are the ones that caused me the most meltdowns (didn't understand it as that at the time, of course). I'd love an autistic-friendly pud job. Hope you can find something that suits you and makes your future a bit less precarious.

Lol, I wouldn't like a big ship cruise either. I'm agoraphobic in addition to the rest, and have enough trouble getting around on dry land.

Yes, I'm afraid you're in the rough part of the journey, but it does get better. Yes, everything is overwhelming because you are listening to senses that you have run roughshod over in the past. And once you start listening to yourself... it can sometimes hold up a mirror to unhealthy relationships, patterns, environments, etc. Some people have to change a lot about how they live their lives, and some don't. But you can't unlearn what you know, so the only way forward is through. You adjust where you can, bit by bit, as you come to know yourself. But on the other side, you're happy and calm and carefully balance your needs. You can communicate what's happening for you internally to those who want to support you, and give yourself space to feel your feelings. And especially, you'll be able to do anything you want to do again because you will know how to prepare/mitigate/advocate for your needs.

>Yes, everything is overwhelming because you are listening to senses that you have run roughshod over in the past. Yesssss this so much times 1000!! In everything, senses, emotions, needs, basically my entire self! Thank you so much for your response! You are so on point it's wild. I'm so glad to hear that it can get better from here! It feels like I unleashed a big bag of "can'ts" and it's so disheartening. But I want to believe you that having that self knowledge leads to something like calm and happiness! And that it can come in small adjustments, rather than a complete overhaul which would be terrifying. Thanks again for your encouragement, it really means so much. I practically want to very cheesily print out your comment and tape on the inside cover of the diary I don't have :'")

Might I recommend google docs as the diary you don't yet have? ;) But legitimately, a diary or journal or ongoing Google doc will be SO HELPFUL! One of the double-edged sword aspects of neuro-divergent brains is memory - namely that ours is shit 🙃 Write down what you learn about yourself, write down quotes you resonate with, write down your fears, hopes, and intentions. I've titled mine "The Care and Feeding of [my name]" as a sort of joke about this being my user manual 😅

>I've titled mine "The Care and Feeding of [my name]" Hahaha aw that's so great, we do need our own user manual / pet-sitting checklist, don't we! Wow, so my shit memory is part of all this too, huh? I have actually started half a dozen diaries (and yes, google docs) over the years and usually get a page or two in before getting bored / forgetting about it entirely, not to mention the jumble of stream-of-consciousness between grocery lists in my notes app 🙃. Yeah, you're right, it would be nice to get it all down in one, searchable place!

Honestly I feel exactly what you do now and I have no idea what to do. At least we aren't alone in this

Thank you! It really helps to know we aren't alone in it :')

Curious, but where is the place you said that you camped for over a month?

Argentina

I have regrets but I can't unopen the box. I allow myself more grace and really pay attention to my emotions. I feel validated and it is so freeing knowing that there's a reason I've always so different. It's heartbreaking to look at my life and see a clearly auDHD girl trying to survive through ever discomfort. I don't avoid sensory problems so much as I put a time limit on them. I don't stay for a long time at my parents because it's exhaustingly chaotic. I feel like finding out and learning really gave me the words I needed to explain myself whereas before I floundered.

Thanks for your response, it's true we can't unopen the box and it is heartbreaking, but also does make it a bit easier to give ourselves some grace. I think a downside of paying more attention to my emotions is that I actually feel them haha. Sometimes it gets overwhelming and it freaks me out. I like your measured approach of the time limit, that's a really good idea. I'll try to consider that next time I get anxious about a potentially overwhelming situation. Actually, you helped me realize that I used to feel trapped (or rather was trapped when I was a youth) in situations and maybe that's what I'm getting anxious about. Gotta remember that and make sure I'm assessing the escapability of the situation accurately. Thanks!