The Worst Parts Of Realising You're Autistic
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- Опубліковано 15 вер 2024
- Getting a late Autism diagnosis or discovering your Autism can be LIFE-CHANGING in a lot of positive ways, but we don't often talk about the downsides or negatives... let's address them today!
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The negatives are positives. I have lost friends, but they were deadwood. I have lost capacities (burnout) but they were unsustainable. I disillusioned, but who wants to live a delusional life, especially when the delusion is around yourself. The past has become a far darker place than it was, I guess that is the only real negative. I look back and realise that I had far less agency and control over my life than I thought I did and that a lot of what happened which I thought was just a regular thing was actually me in the postion of an exploited or abused person, and to be totally honest, I also did things which were far from ideal for others too which now I know I am Autistic I don't think I would do now. My life is far more considered now that i know.
I have found so much the same. Its like a life review with each aspect just sparking up, from some forgotten memory. Although as you say it's a positive because as many great teacher have expressed and our greatest journey is know thyself.
I haven’t found any positives since finding out late in life. My job let me go after telling them, my only 2 friends I managed to hang on to for the last 15 years stopped talking to me, my mom flipped out and asked “why is this happening to me”, as in why is it happening to her. I’ve been unemployed for almost 6 months, no one will hire me when I tell them I’m autistic, I dont qualify for unemployment because of how much I made at my last job by a small margin. My wife is the only one who seems to not be abandoning or judging me. Also where I live, i think it’s frowned upon in this small rural town in the middle of nowhere so hiring me would be seen as an embarrassment or a risk. I’ve just been sitting home depressed, anxious, hating myself trying to distract myself by playing my bass and Warframe. I have no friends or family, no help. My wife had severe ADHD, and has her own struggles. There’s no support around here unless you’re a child. Self advocating has gotten set me back. My wife can only work part time, we had to go on food stamps, barely able to survive. And because it’s a small town everyone knows everyone…they all talk, no one will give me a job because they either don’t believe me or dont want someone with autism working for them. Others started the infantilizing or talking to me like I’m stupid all of a sudden even. Finding out and trying to advocate for myself made my life worse.
I feel for you. I was diagnosed 2-1/2 years ago at age 57. At first I was hopeful that I'd find the support and acceptance I so despereatly needed throughout my life. It immedieately became clear that the pyschological and psychiatriac industries had nothing to offer in that regard. So I turned to my freinds.
What freinds? I soon discovered that most of the freinds I had were not really my freinds. They didn't care about my lifelong struggles. They were taken aback and contemptuous of my diagnosis and especially my newfound autistic identity. My self assertion, and embracing of autism meant they could no longer feel good about shaming me for not conforming to their expectations. They could no longer feel good about being more successful and superior to me I guess. No fun for them to feel superior to and dominant over what they see as a cripple. Someone disabled. Someone they'd been exploiting and bullying for their own amusement and sense of power. Some of these false freindships were decades long. It was devesating losing them, because freindships are hard to come by as an austistic person, and even more difficult to maintain. My greif and sense of loss was immense, and it still hurts when I think about the years and emotional energy I invested in these freindships
But it's slowly dawned on me that these people were never my freinds. They were abusers who exploited my autistic difficulties so they could feel good about themselves. No one is all bad, and none of these people were monsters per se. They were just nuerotypically abusive and contemptuious and shallow and competitive and bullying - which is how nuerotypical freindships seem to operate. Some may have had autistic traits themseleves that they were unable to face, and which my diagnosis brought to the forefront making them deeply uncomfortable.
It doesn't really matter. I cannot and will not associate with anyone who doesn't accept and empbrace the fact that I'm autistic. It's better to walk alone in peace than in company with strife. I have very limited bandwidth for freindships. I find most people taxing and burdensome to be around. Especially people who don't see or hear me. People who shame and judge and abandon me because I've grown and evolved and embraced a fundamental truth about myself that makes them uncomfortable.
To these false freinds I say:
Guess what asshole? I don't need your bullshit freindship! Cutting you out of my life makes room for my interests and to pursue friendships with people who'll embrace and love me for who I am, instead of who they want me to be. They deserve the loyalty and respect and support I offered you. It's your loss, not mine.
Thanks for teaching me that I deserve better and to define and set clear expectations and limits with future freinds. I'm living proof that people can grow and change through hard work and gain personal insight. If you ever realize your mistakes and wish to make amends, I'm open to reconciliation.
But you're going to have to accept, embrace and support both me my autism if we're to be freinds.
Period.
Good luck @Whiskey. I hope this helps. You're not alone =)
You do not have to disclose any health conditions (including mental health conditions) during the interview process, and it is illegal for them to ask in the US. The safest bet is often to interview and get the job, and then immediately tell HR so you’re protected under the ADA. if you are “let go” after disclosing that is illegal, and disclosing after hiring means your lawyer can prove that they knew you needed reasonable accommodations for a protected disability (if you need any at all, functioning at your job while undiagnosed means you might not or accommodations you do need are probably reasonable). I’m also told that some lawyers take cases on contingency, so you only pay them if they win your case. But it is perfectly legal for you to pass yourself off as neurotypical if you are concerned that your employer won’t play by the rules.
Advocacy is the key and there isn't enough of it.
Have you consulted a discrimination lawyer ???? 💙💞🙏🏻🙏🏻🙏🏻🙏🏻💞💙👊👊
I liked your comment to show support for your experience, not because I like the content. I am sorry you are going through that. It mirrors my own situation in so many ways, particularly the employment issues and the people who are most important not immediately understanding why it even matters, meanwhile I have lost yet another job, still struggle with substance abuse, and am constantly concerned about becoming homeless. I'm glad you found a neurodivergent partner and am not surprised they have been supportive (little bit jealous but PDA makes even healthy partnerships feel like just a really well disguised trap to me). All this was to say that I believe you aren't always aware of the positives of major life changes at the time. I have one. I want to kill myself less than I did a year ago and no longer think I'm fundamentally broken. Did spending 40 years feeling broken actually manifest into becoming actually unfixable and broken? Maybe, but just the knowledge about myself and the potential to find a support network of people who aren't constantly judging me for existing wrong has kept me going. The fact that you are here consuming content and sharing your struggles and vulnerabilities so honestly makes me believe that there is a future for you that is bursting with positives from understanding yourself better and focusing on what you actually want instead of trying to meet arbitrary life milestones set up by a society that fundamentally doesn't understand your experience. And thinking that about you gives me a little more belief that I might find the positives some day as well.
My negatives 1) As soon as i revealed it, people lost interest. I could tell from their body language and demeanor. People would change the way they speak to me or try to suddenly treat me as low IQ.
2) The autistic community is pretty judgemental. Other autism adults actually wondered why i was social and not like them. I found myself having to mirror them and appear more autistic than I am just to blend in at support groups. 3) NTs didnt or still dont believe me. They say I am high functioning or too social or they have known others far worse off. I think its easier not say now to anyone, i cant be bothered
I get this, only a few people know for me so far, I can feel myself changing (as happens) it's all pretty terrifying as I realise my executive issues can't be seen by others.
The problem is that people see me as (list of positive and enviable traits) but that's an external appearance, it doesn't reflect reality or the constant scramble and tortures behind the eyes.
I'm afraid that telling people will provoke anger and contempt even career cancellation, already I'm noticing more now people doing a little double take when they see 'the thing' , I'm just not prepared for any of this going down and I really don't know how to deal with it.
I know I wasn't better off not knowing, that was a different hell altogether, I wouldn't wish upon anyone.
Should I keep it secret? I'll feel like phoney, and it will not help my survival, or will it?
@chuzzbot This is a tough one. There are a lot of good people in this world who will probs on the surface be nice and respectful when u tell them.. most would be. The problem is that when u do something considered socially not the norm by "being yourself" that's when people may judge you or not get it. I used to be very socially awkward, overshare, say the wrong thing, sometimes being rude and no one ever appreciated it, except the odd one or two people, I also had weak boundaries... eventually by trauma and trial and error I learned to mask, hide any anger etc and unfortunately this has created an identity crisis. I just say what most people now wanna hear and i have to always tone it down, email or by writing is the only way i feel I can express things. The problem with society is people really want to be around positive and agreeable people and despite saying they understand, they will then judge and not like the traits when appeared. I self sabotaged many social relationships but luckily I have found a great employer and one or two close friends, but even now I am not fully be myself. I would say u may as well tell people because at least u can ask for accommodations and be considered for financial help, but unfortunately masking will have to be inevitable for a while.
I just got so sad realizing that if I had thought of my autistic traits as personality quirks instead of character flaws for the first 40 years of my life it might have led me to a less self destructive path. But at least I'm not about to blame myself now that I have finally started to understand my brain that always felt broken. Sharing lived experiences is so important for people in any marginalized community. People shouldn't feel broken for not matching the majority and I bet most people have felt this way at some point for some aspect of who they are. People are complex and generalizations are easy.
Hmm the negative that has come out since I found out I was autistic… I realized I don’t understand people as well as I thought I did. There were instances where people were apparently throwing shade and I never noticed because it was too subtle. Or when people are not being explicit about what they are saying and why - ex: giving
strange feedback on something for some office-political reason, without telling me the politics! - so I guess one of my traits from being autistic is needing more direct communication. This has led me to be a lot less self confident in my professional interactions because I now know there is so much going on that I don’t pick up on, and that scares me! 😅
@@BreeeYT it has been so jarring to realize I experience the world so differently. I spent so much time being quiet, making myself small, and agreeing to things that didn't make sense to avoid confrontation. 'It's common sense," and "You know why," should be illegal responses to requests for clarification. At least I know that people who say that to me aren't worth my time. Unfortunately I live in a capitalistic society and possess a pervasive desire for autonomy. Why didn't I just marry *up* when I was young and naive?! Surely I would have outlived my trophy wife hungry octogenarian husband by now.
Thanks for sharing this Bree. This is 100% how I feel right now and why I am starting therapy. It feels like I have been living in a fools paradise, like I am the punchline of a joke everyone but me got 54 years ago. I trust people far less now that I know I am Autistic because I now realise that they do indeed see me as a weirdo and they do honestly (al lot of them) have zero empathy for me, like it was when I was a kid basically.
my experiences:
- nobody cares
- everybody knows better (they saw an episode of doctor house or something)
- dismissivesness and denial ("Asperger's is mild so stop acting autstic." was a good one)
- accusations of lying, acting, faking, fraud, purposeful misbehavior, etc
- being confronted with stigma and widespread misinformation
- a guy throwing down a stack of cards and asking: "how many cards, Rainman? i thought you can count and stuff!" :D what an idiot
- condescension, pity, patronising, devaluing behaviors
Realizing I am Autistic, late in life, was one of the most liberating experiences in my life because the ASD stuff explains EVERYTHING in my life. All the weirdness, dysfunction, bullying, difficulty keeping employment, and lack of social skills, etc, finally made sense to me. It feels like it relieved a huge burden. One strategy I have is I NEVER tell anyone I'm autistic. NEVER.
Interesting, I find that the right people make adjustments and want to learn but I don’t think most are open to that!
Getting Autism diagnosis late in life afforded me protection at work as I was getting bullied, so from that point of view it helped me. But my wife left me not long after, as I was not the person she thought I was as I masked well when I was younger, so I was beyond redemption at that point in that she couldn’t change who I was. So there is an argument that there is downside to being diagnosed late in life. But overall I can’t now be ME, not pleasing others or trying to pretend to be someone I’m not in order to appear ‘normal’. But now I say FUCK THEM, it’s their problem not mine.
I had, in my opinion, an excessively conservative Christian family that didn't believe in doctors or their "made-up" diagnosis. They stuck fervently to the "spare the rod, spoil the child" bible stuff, so believed they could "discipline" the "devil" out of me. So I grew up believing I was bad and it was all my own fault, and I was designated the unspoken scapegoat of the family and went practically mute. My only friends were the pets that I had, and the few friends I made in school often took advantage of my nature. It wasn't until 8 years ago, and I'm 40 now, that I began realizing all of this, and putting the puzzle pieces together about myself and my family. I don't trust anyone, and mask around everyone still. I have a cat, and a hamster. My roommate of 6 years doesn't have a clue who I am, and we get along, but I still don't dare unmask. I don't speak to any members of my family.
I'm very very fortunate to belong to a Christian church that actually takes mental health challenges seriously & provides resources, but that being said it's still frustrating whenever I see individuals within my Church's culture that are distrustful of medical treatment or science. We as humans build communities to heal and support each other, which is completely incompatible with delegitimizing licensed, professional care
And I'm really terribly sorry to hear all of this. There are people out there to form a support system with, even if they're difficult to find. Best of luck, please know you are loved and have wonderful, valuable things to bring to people ♥️
I self diagnosed about a month ago at age 70. Getting a formal diagnosis is probably meaningless for me, but I do struggle with imposter syndrome and every once in a while I think, This is so weird. How did I go this long without knowing? and it all seems so unreal. Overall, it's been very life affirming for me and I know better how to advocate for myself. long ago I quit trying to fit in with or hang out with people I find difficult or boring and I now realize that I have probably been hanging out with other undiagnosed autistics or at least welcoming, tolerant, and inclusive-minded people. The online autistic community is lovely. Enjoying your videos, which are very helpful.
Awh thank you for sharing Sarah, I can’t imagine what that’s like. You must have a lot of valuable experience to share
I am 60 and starting to come to grips with the idea that I am quite likely autistic. I’m feeling many of the same feelings as you.
I don’t feel getting a diagnosis would matter with my work. The people that matter most to me there are pretty understanding of me as I am, without any labels.
What I do worry about is retirement, which is coming up in two years. I worry that the sudden lack of structure in my life might make it really hard to manage my executive dysfunction. This worry comes from past experience when I was going through times with less structure. I actually had to self advocate for some accommodations that engineered a semblance of structure into my life. Who do you advocate to for that kind of thing when you no longer have a boss?
I actually got diagnosed with autism and ADHD in June of this year. So far I find that it didn't change anything except my perception of how I view myself. I still have most of my same friends I had before. I have not once told any former or potential employer about my recent diagnosis. I don't feel comfortable with disclosing that on the job, nor do I disclose to everyone I meet. I did tell my siblings but that didn't change their view of me.
Reposting from reply below. I was diagnosed as autsic (Level 1) 2-1/2 years ago at age 57. At first I was hopeful that I'd find the support and acceptance I so despereatly needed throughout my life. It immedieately became clear that the pyschological and psychiatriac industries had nothing to offer in that regard. So I turned to my freinds.
What freinds? I soon discovered that most of the freinds I had were not really my freinds. They didn't care about my lifelong struggles. They were taken aback and contemptuous of my diagnosis and especially my newfound autistic identity. My self assertion, and embracing of autism meant they could no longer feel good about shaming me for not conforming to their expectations. They could no longer feel good about being more successful and superior to me I guess. No fun for them to feel superior to and dominant over what they see as a cripple. Someone disabled. Someone they'd been exploiting and bullying for their own amusement and sense of power. Some of these false freindships were decades long. It was devesating losing them, because freindships are hard to come by as an austistic person, and even more difficult to maintain. My greif and sense of loss was immense, and it still hurts when I think about the years and emotional energy I invested in these freindships
But it's slowly dawned on me that these people were never my freinds. They were abusers who exploited my autistic difficulties so they could feel good about themselves. No one is all bad, and none of these people were monsters per se. They were just nuerotypically abusive and contemptuious and shallow and competitive and bullying - which is how nuerotypical freindships seem to operate. Some may have had autistic traits themseleves that they were unable to face, and which my diagnosis brought to the forefront making them deeply uncomfortable.
It doesn't really matter. I cannot and will not associate with anyone who doesn't accept and empbrace the fact that I'm autistic. It's better to walk alone in peace than in company with strife. I have very limited bandwidth for freindships. I find most people taxing and burdensome to be around. Especially people who don't see or hear me. People who shame and judge and abandon me because I've grown and evolved and embraced a fundamental truth about myself that makes them uncomfortable.
To these false freinds I say:
Guess what asshole? I don't need your bullshit freindship! Cutting you out of my life makes room for my interests and to pursue friendships with people who'll embrace and love me for who I am, instead of who they want me to be. They deserve the loyalty and respect and support I offered you. It's your loss, not mine.
Thanks for teaching me that I deserve better and to define and set clear expectations and limits with future freinds. I'm living proof that people can grow and change through hard work and gain personal insight. If you ever realize your mistakes and wish to make amends, I'm open to reconciliation.
But you're going to have to accept, embrace and support both me my autism if we're to be freinds.
Period.
@@TheWilliamHoganExperience thank you. I needed to hear that other people have limited bandwidth to deal with people and feel unheard.
very helpful video, good information and very true, well said indeed.
im understanding so many of my traits in a new light of understanding and it makes me feel validated and the clarity it shines on so many things has been revelatory but also has led to me feeling rather… ashamed of myself for lack of a better word and been a real blow to my self esteem, at the same time. a lot of memories of interactions ive had my whole life and relationships with others seem different now looking back. im shocked to realize that i was “being weird” in the eyes of others not because of some mystifying hypercritical meanness on their part, but because the ways i was behaving/feeling/reacting/prioritizing/doing things genuinely were “weird” or abnormal or unexpected. they made perfect sense to me! but people always treat me like im abnormal and wrong. so i gave up on interacting with anyone and avoid social situations. the ways of neurotypical society are just over my head, too illogical for me and beyond my grasp. i can see now that i was behaving oddly, for other people’s expectations, and feel like “no wonder they all always ostracized me and gave me weird looks.” but i realize now that my ways, unaccepted as they may have been, were something i cant help. i feel like ….less sorry over them and more sorry over them at the same time. i feel shocked and embarrassed. but i couldnt help feeling how i felt and being the way i am. its a lot to process. i guess i have much confusion and ambivalence one could say. i see myself through others eyes in a new way and its making me see myself differently than how i thought i was.
I was diagnosed at the age of six years old. Nobody told me until I was eighteen. That is the main difference between me and most autistic adults.
That’s interesting, my parents decided to tell me when I got diagnosed at 10, although they put off getting me diagnosed for a fair time
I think I'd be a lot worse without a diagnosis. The problem I've had is not knowing what to do with it in terms of advocacy. A diagnosis changes your life but it doesn't affect progress unless someone helps you. I await you 'Best Parts Of Realising You're Autistic' video. 👍
the one thing i personally infantilisation and also i am registered as a venerable adult when my doctor gave me that paper to give the council, i sort of took a step back as i never perceived that about myself. i spend that much time in my own world i really did not see myself as venerable, but got me paranoid in how people perceived me at first.
"i am registered as a venerable adult"
Oh, really?
Definitely the biggest negative is feeling not autistic enough, like I’m making it up because I don’t handflap or play with fidgets, etc.
I’ve masked so much that I don’t even know what being authentic would mean, as well.
I'm a 45 years old male, from Vzla. It's been 3 days since I realized I might be in the spectrum (did most of the tests at embrace-autism site, most of them signaling a strong possibility of autism) and watching many, many YT vids about autism, and seeing how "My unique quirks" were so common among autistic folks. I'm still in the shock/grieving phase. I saw how most of my bizarre life now finally made sense. Completely.
I think the worst part will be when I communicate this to my family. My mother knows, I know. She constantly, during my whole life, pointed me every weird habit I had, like being too honest, not looking to the eyes of anyone, my social anxiety whenever I had to attend a social event, my inability to meet new people... yet I know that she will refuse it, so I'm compiling almost everything I did since my childhood. She's a good woman, when I got out of the closet this year (I'm gay) she took it well, way better than I expected. But this... I'm getting ready for all kinds of weird responses "You are watching too much YT", "those wokes have filled up your mind with crap", "You have a degree and can talk to people, you can't be autistic" . My sister is a bit more open minded, maybe I should tell her first. My dad... I barely talk to him, he will know eventually after I tell my sis and mom, but I don't care about his opinion. Yes, my relationship with him is bad. My biggest fear, is that they change how they treat or see me after this.
I'm self employed now, but I guess if I still worked in an office environment as I did 14 years ago I wouldn't disclose. There's no protection for autistic people at work (so much for socialism...) so I guess they would have fired me as soon as they found out. Funny thing, I guess my (ex) boss suspected something. He constantly joked about me being just like Sheldon Cooper, from Big Bang Theory (back when it was popular). I always brushed it off... but maybe I was kinda obvious?
I don't see a benefit getting a real diagnosis, beyond having a medical confirmation to throw at everyone telling that I'm just crazy, or to say it on the internet. And well, it's extremely expensive to get it in my country through private means, and the few non-profit organizations that do it here, cannot even do with the child/teens. Let alone a 45 years old adult. WHAT I'M GONNA DO, is to consult a psychologist dedicated to autism, and have him/her look at me. That, I can do, even though they can't give me an official diagnose.
I find it so fascinating how so many autistics and those younger than us (I’m 53) talk about how bad capitalism is, it’s the worst thing ever, particularly if you’re autistic. And yet, while a particular term has been retired from the DSM-5 that was present in the DSM-4 they don’t make the connection to the system that had the person’s name associated with it and what he was required to do due to the system.
I was late-diagnosed in the US in 2002, unexpectedly. I also have Meniere’s disease that complicates things. Sensory issues are getting worse for me over time, Meniere’s absolutely contributes to it, and a combination of those two issues are the most readily predictable reason I can see for ending up too disabled for work according to the Social Security office. I’m making a reasonable effort to save/invest for retirement, knowing I have a real chance I won’t be able to remain employed through the age of 67, full retirement age for me according to how things are here in the US, with the note I work in tech. Last year the office environment was changed, along with threats of layoffs/etc., last year that it drove me into autistic burnout, which I hadn’t been aware of before last year was something that could happen to autistic adults. An open office environment (which has become quite popular amongst tech employers) is a sensory nightmare for me, an AuDHD person also with Meniere’s, especially combined with people talking in many conversations, often loud, along with all their personal and work electronic devices with their alerts on MAX VOLUME because they’ve habituated to them, but I can’t, and that sets off fight-or-flight. Hyperacusis truly sucks.
Not particularly late with realising, but I started to suspect I was autistic in my mid teens, and had to go through as you put it "a second puberty" at the same time as the natural one. I realised many things, such as how emotionally messed up I am from masking away emotions like anxiety and stress.
This is so true haha I’m no longer entirely alone - in my own category. I can relate to other humans now… which is weird, but glorious!
I'm blind and recently realized that I'm also autistic. I think my blindness masked the autism. Discovering the autism has made me reanalyze a lot of my memories and notice how messed up so many of them are. People would give me some meely-mouthed platitude when I asked for help. Now I understand that they were showing their contempt and apathy but felt guilty about not "helping out the blind kid". What's affected me the most is the anger. Nobody ever told me what was wrong or that something even was wrong to begin with
That’s very interesting, cause a lot of signs people pick up first on are attention. I imagine being blind like being deaf can mask a few traits.
I’m sorry you’ve experienced that, it’s a hard one isn’t it, you want people to be nice but when they fake it it makes you feel icky
The origins of the words Autism Spectrum translates to Self Image. It actually makes allot of sense to me that autism is a self image disoder. We're different and have been made to feel bad about who we are (which is where the disorder parts comes in), by ourselves, the people around us or both. I often joke to myself that they're literally diagnosing people as themselves, but having autism myself I'd say its actually not that far from the truth. Getting an autism diagnosis is very much like recieving a permission slip to be yourself.
I remember when i realised, i realised my feelings around my neck and feet were sensory issues and real, and my awareness made it flare up for like a week and i freaked out to the point of a meltdown, and while it was happening i still thought i must be putting it on 😭
Hey Thomas, thank you so much for this video, it kinda came at a really fitting time for me.. ✨️ I've been experiencing more loneliness actually.. At first it was so exciting you know, finally I had some words and reasons to explain my behaviour and way of thinking which always leads me into conflicts with others unless I just internalise all my thoughts and meanings and stay quiet.. So yeah, I'm often quiet even though I have a lot to say, I somehow always have an opinion on things, even though I don't know much about it or even care about it.. Anyway, yeah, so it gave me hope that now I can explain things and perhaps reconnect with some people but no.. And it's not even those people that doesn't believe me, because I've been prepared for people not believing me and telling me that everyone does this and that, etc.. No, what I've discovered is that it doesn't matter if they believe you and listen to my explanations and such, because the instant the clash comes and a conflict is raising, they go right back to expecting me to think and respond like they do, call me stupid because I'm taking some time to think before my answers come or just telling me to think over and over again, like I'm some freaking child.. 🥀 I had kinda given up on humanity from before but got my hopes back when I discovered that perhaps I'm not broken and shouldn't exist in this world, I'm just different.. But now I'm losing that hope again, because it doesn't matter, nothing will change, they truly don't understand and now that I know that I'm different, I feel even more alone and alienated from the world around me.. 🥀 Yeah, the online communities I've found is amazing and makes me feel less alone when I'm interacting with them, but the instant I go offline, the outside world comes crashing back onto me and I feel like things will never change, I'm doomed to be forever alone, just like I learned and knew when I grew up.. 🥀 I'm sorry about this negative view on life but yeah, it's dark days..
I try to understand that, naturally, someone who more or less senses and feels as the majority of other people they meet sense and feel will begin to assume that EVERYONE, more or less, senses and feels as they do. I know I can’t assume others think and feel as I do, because I’ve never experienced that working out for me; but, it can at least somewhat work out for others UNTIL they meet someone neurodivergent. Thing is, they automatically assume everyone else more or less senses and feels as they do, so they assume the thoughts and feelings of the neurodivergent person are those they would have that would cause that behavior. Maddening, but, as I said, understandable. 😵💫
Thank you for sharing your experience and being so open :)
After diagnosis others start to enfantalize me a lot more when they know of the diagnosis.
Everything positive and also negative is blamed on ASD when I am like... nah thats just me it has nothing to do with ASD.
Still not fitting in even though a lot of others have the same diagnosis and sometimes simulair experiences.
The sentence you should be able to do so and so... (even if i said I definetly could not) it turned into you can not do so and so... (when I am like yes i can) Even when i proof i can it is just me being lucky that it worked out that time but next time if will definetly not according to others.
Another thing i dislike is when others diside for me what is and is not ASD. As if they now what it is like and are an expert of some sort.
I'm diagnosed adhd and I just got diagnosed with autism level 2. It's great finally having the answers so I can get help, and I will get help. My mom understands the adhd but not the autism so it's been hard.
Im only on the first one but can i just say, finding out im actually autistic and not just a freak of nature was so liberating. I love that there are other people out there with struggles similar to mine, it makes me feel less lonely and more like i have an actual community. I dont want to be unique, i want to be accepted and understood!!
i'm sorry for the bad experiences i see that people have in the comments. i certainly wish you all the best in the future! ....i'm new here...i'm debating about getting a diagnosis. on one hand, it has been tough that people don't really believe me, but it also seems even if i got the diagnosis, people wouldn't believe me either. i suppose what is difficult for me is that it will always be hard or impossible to really integrate with most of society. i'm very high masking, so i know i've already tried and failed in that category. but, i'm optimistic! sure, i have spent a lot of time blaming myself for being lazy and not getting everything done that i want to, but it is ok. i've got some bigger hills to climb, but now i know exactly what i'm climbing. maybe it will be too tough for me, but i at least hope that my efforts makes it easier for someone else in the future!
Thank you!!!
Definitly, people dont see all the meltdowns and struggles, as we mask when possible. When i didnt i got involontarely commited to psy hospitals. So if people see you unmask it will seem worst to them. I personaly find my accommodations much less debilitating than my meltdowns… which have drastically lessened since accommodations!!!
It a hill I m willing to die on: Accomodations is the power of accepting yrself.
Lots of love
I just got a diagnosis of ASD Level 2 at the age of 32. I know allot of people don't think self diagnosis is valid, but I've been on and off researching about it since I was 17 and I was still unsure if I was or not (the closest I got was "very likely"). I spent years thinking about it, and a psychologist diagnosed me within an hour reciting questions from an AQ test. I did get a list of doctors and chose the one who specialised is ASD. But getting diagnosed so quickly seems a bit unreal and unscientific. Psychology is incredibly complicated and I can't really understand how they managed to make that decision.
I guess I'll just have to wait to see the doctors report.
@@micheals1992 a proper diagnostic process isn’t just a matter of multiple choice questions, it’s also analyzing how someone thinks and responds behaviorally. As such, answering the written questions is one part, the unwritten aspect otherwise is often the more important part: the questions themselves are meant to reveal more than the multiple choice response they provide as options.
I’m seeing a psych NP with the main objective for me of figuring out ADHD meds (I have BP control issues I need to get better, being overweight isn’t helping) and in general optimize the usage of my neurology, since that’s what I’ve got to deal with. She wasn’t one that assessed me, and has stated she’s not qualified to do such an assessment herself. In her presence, I had thought I had been masking sufficiently well to appear neurotypical, whether unconscious or otherwise. Last fall, I asked her an interesting question that got an interesting answer: if you hadn’t seen on my paperwork that I’m autistic, how long would it take you to identify that I’m autistic? She went into deep thought for about 10 seconds, and told me: about 45 seconds, based in my mannerisms. Seems my masking is pretty lousy at its best!
After going into autistic burnout as a result of work last year, between the stress of potential layoff/termination, a change in workload combined with moving into a sensory hell open office environment, I’ve come to conclude that masking is suicide in slow-motion, and since I’m not suicidal, I can’t afford to do that. I got caught off guard by the burnout, as I wasn’t aware before last year that could happen to autistic adults, as I was diagnosed at 31 in 2002 and that wasn’t something I’d found a reference to at all back then, but it matches up with “autistic regression” seen in autistic kids.
I don’t have meltdowns or shutdowns readily or often, and I believe it’d been decades since I last had an actual meltdown before I went into autistic burnout last year: for the most part, I do pretty well at self-regulation, but I was finally put in an environment that pushed me too hard for too long. I’d suggest you research autistic meltdowns, shutdowns and burnouts in all aspects, think back in your past: you can’t really end up with those if you’re not autistic, it seems it’d be extremely rare to not experience any of them and be autistic, even though those events aren’t themselves in the DSM-5.
Official affirmation gave me legal certainty at work. Finding out I was autistic changed my interactions with management from disciplinary to occupational health and support through disability legislation.
I'm in my 50s and self diagnosed after questionnaires, videos, reading and the opinions of two people with reasonable knowledge of the subject. Sometime ago when speaking with a coworker, I floated the idea that I might be on the spectrum. I was greeted with all sorts of stupid, uninformed comments, so with that experience as well as hearing about similar incidents from others I realised keeping quiet is probably best. Another coworker, a good friend, has an autistic grandson, but considering her reaction when raising the subject I believe telling her about myself would kill the friendship, with or without a diagnosis.
For me, believing this is helpful in explaining my behaviour. I could be completely wrong but I can't go on wondering, and trying to get a diagnosis is slow, possibly expensive, and fraught with feelings of imposter syndrome, both internally and externally. Not only that, if it was determined that I was mistaken I don't know what I'd do.
Most of the people in my circles have reacted to me with a strange mix of "you can't POSSIBLY be autistic", and "everyone's a little autistic, aren't they?". They tend to not like it when I responded with "so, you're saying everyone's a little autistic EXCEPT ME, which still means you recognize my differences, you're just trying to deprive me of the identification as to WHY."
My work made me wait two years for accommodations because they wanted to do their own assessment. I was already diagnosed with a note for accommodations. They denied it and I had to wait two years of people refusing to fill it out. Then, once I did get it, they fired me for no reason.
I watch a channel that interviews people who have recovered from CFS. I recently noticed that they haven't interviewed any autistic people. I don't think they are discriminating, I think it's more that we aren't recovering.
Its an interesting community..
A sheltered niche of a larger problem. And tho I do suffer, and it is real. Much like autism; its not something I'm trying to identify with.
Ok I want to ask this even if it’s a little unrelated. I’m autistic and have got the grades to get into sixth form. However, there is of course ONE hurdle stopping me from smoothly transitioning into sixth form. A TEAM BUILDING DAY! Oh it’s great. You get to talk to people and play games. Some autistic people might find this ok and fun. But for me, it is a social nightmare. The unpredictability of not knowing what the activities will be and how I might cope are giving me terrible anxiety. Not to mention, where I go to school the first years go to a more primary school esc building separate to the rest of the school. This is where the day will take place. The idea of interacting with people I’ll likely never talk to again and playing games I probably can’t even do due to my disability makes (to me) going not worth it. However, it is still the first day back for fifth and sixth years but work days and classes don’t begin until the Monday after. So, my question is, should I go to the team building day or prioritise my wellbeing?
looking back i can see many instances in my life where i forced myself to do things i was dreading and uncomfortable with because it was expected or ‘necessary’ and while there were times that it turned out okay (things are usually way worse in our fears than they turn out to be in reality) there were also times i regretted not listening to my gut and upholding my boundaries. if you do decide the benefits are worth the potential sacrifices and risks, try to build in things to help make it easier like frequent breaks, have a escape plan ready to deploy, have good sleep and nutrition the day before and eliminate other stressors prior to the event as much as you can, have something comforting and healing to look forward to for afterwards scheduled for yourself, come equipped with everything you can think of that will increase your safety and confidence. can a good supportive friend come along? if instead you decide the risks arent worth it be gentle on yourself and feel proud that you protected yourself and stood up for your needs and respected your boundaries. once you can view either option in a positive light (either Yay I prepared myself well and did a brave thing, or Yay I honored my limitations and stood up for myself by choosing to avoid triggering situations) look at the choices anew and choose freely out of a feeling of empowerment, dont make decisions based on fear and dont feel ashamed for either choice because they are both okay choices.
you need a diagnosis if you file a disability discrimination claim w the government. In the US, the ADA and the EEOC protect those w disabilities and perceived disabilities
I just found out a month ago, not sure I'm up for it really.
Did I read that right that you can register as venerable adult? How does that work?
Does anyone know if indepth knowledge of your childhood is essential for a diagnosis? I have patches, and my mother cant remember much of when i was little. I used to spend time with other adults who are no longer here. My son is on the spectrum, and ive been diagnosed with a myriad of things which to me dont actually fit (like eupd). The referral from nhs was sent back as lacking childhood information, i know my social anxiety has been there since primary. I'm scared to even try with this refferal, but it feels like the only way forward as services dont really want to try and help for my social anxiety again as i may be on the spectrum too, and a different approach would be needed supposedly. I feel like im in a stuck situation.
I am a purple horse who gets disability payments because of my because of my own experience with being on the autism spectrum. (I was early diagnosed, but I decided to comment underneath the video anyway)
I realized that there are fewer question if I just say that I am "on the Spectrum". People accept that more readily that saying "autistic". It seems the the Spectrum word means basically "nerd" to a lot of people. Most acquaintances already knew that I was a nerd anyway - lol
Told I shouldn't get married because I can't understand love and relationship
Thanks Thomas, great video. And thanks for asking. I'm really pleased I got my diagnoses. There is some positives. But the negative is.... I feel everybody I know, from my adult children to many close friends just seem to dismiss it. The usual " every ones a bit austic" to people just undermining me. I suppose as all adults have. In my head on my own I'd know what to say. But then when it comes to speaking up, I just freeze. And feel such a child, even though I'm close to pension age. Diagnosed 2 years ago.
Could you explain more what it was like as child, growing knowing ( and diagnosed)you were autist.
As I'm really frightened for young people after reading in news an article about the abuse of they have received in the UK at specialist private school. I'll send link if you wish.
It is a funny turn of phrase.
Thank you for your honesty Thomas.
Serious question: do you think having an official diagnosis makes it more likely that authorities/officials will believe you when you say something like "I may seem odd or unusual but I'm autistic, I'm not suspicious, dodgy or on drugs"? Or will they just formally accept it but then continue to treat you as if their original impression is still valid?
In other words, is getting a piece of paper a way to avoid the Lucy Letby treatment?
Since I've asked you a question, it'd be pretty unreasonable for me not to answer yours, so I'll give it serious thought and edit/reply-to this comment in a second.
Since realising for sure that I was autistic, there has been a bit of regret over the past, for example not having been able to help my autistic Nan to learn she wasn't weird and rude, just different. She was never weird and rude to me anyway: now I know why lol
But that must be common to everyone. For me personally, my ego's definitely taken a hit. I grew up with adults coping by insisting I was super-duper-gifted, when really I wasn't at all. Sure I was good at a couple of things, but pretty rubbish at plenty more. It just made them feel better to tell themselves I was gifted rather than a nightmare lol
The consequence of that realisation is that many of the silly ideas I had about being uniquely brilliant at, for example, music, were just _other people's copes for the fact they really thought I was a fuck-up!!_ and I was *such* a fuck-up that that went totally over my head for pretty much 49 years!
That's a little bit humbling.... but to be honest it's not really a negative because it's better to know you're a twat than think you're a genius mistaken for a twat lol
Hmmmm fully negative..... again this isn't really: I'm letting myself stim. Imagine going 49 years thinking stimming was weird, so limiting yourself to really really subtle, minor things, then suddenly 'discovering' the stuff you did when you were like 2 lol - yeah that's not a negative either, though I think a _little bit of masking_ walking home from town on a Friday night might not be a bad idea, whereas doing sieg heil type gestures up, then hand-flapping back down, repeated a hundred times.... could be misinterpreted as something unusual or silly lol - easy peasy, little bit of masking, lot of stimming in the back garden, no make that the kitchen!
Hmmmmm any genuine negative consequences popping up after the epiphany...... well the fact the educational and medical establishment was _quite so_ horribly reckless, neglectful and incompetent while also being pompously condescending and abusive doesn't sit well.... but I hated those bastards already so even there, not really something caused solely by recognising autism.
Remembering I used to piss myself because I was too impolite to ask to go to the toilet was pretty bad. But even then, realising other people ate in toilet cubicles to avoid complications was a giant relief. (Yep, the Fern thingme interview with the three Aussies.... I was completely thunderstruck about the toilet thing, and had pushed the weeing (only lasted from 6 til 7) right to the back of the proverbial shed my head is.)
Yeah let's go with the piss! Always goes with the piss.
Oh wait, you did say negative didn't you? Or did you say positive?
There's been loads of _positive_ discoveries!
Best one? That 'my uniquely shitty personality' - or my _disordered clinically pathological personality_ - is in fact a genetic neuro-developmental disability, therefore my role is downgraded from solely responsible reprobate to _custodian of vulnerable person_ .
Certainly sounds a lot more honourable, even if it does amount to the same thing lol
The worst part was realizing I was 46, decades after it would have been the most use.
I used to think I was different than everyone else. Even if as they say "if you've met one autistic person, you've met one autistic person" and that autistic people are all different than each other, somehow I feel like a prototype of an autistic person. It's ok, I actually find some humour in it, but it is weird to go from totally weird to a prototype of a type of person is strange.
Wishing you all the best you silly handsome sausage. Just an innocent intended comment, with an innocent hug, if that's ok. Regards Joseph. Ps silly sausage, old chap, old bean, good egg etc always seem harmless happy comments but they must have strange origins.
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"Hey, friends, I recently started to think I might be autistic!
And the only thing you need to do to get to the same conclusion as me about me is watch the same dozens of videos on UA-cam!"
Yeah ... They'll just skip that and continue hitting you with autism bullshit bingo.
Which is basically a variation of what you already said: They don't care.
Heavy relate 😂
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Did you dye your hair? It suits you.