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I was diagnosed over a year ago and have yet to "come out" for fear of the exact things the author describes ("but you don't seem autistic", "yeah we're all a l
by glacials 5y ago
I was diagnosed over a year ago and have yet to "come out" for fear of the exact things the author describes ("but you don't seem autistic", "yeah we're all a little like that", etc.). It's hard to understand what someone struggles with when they've spent their whole lives being trained to hide it.
Imagine having tremendous back pain since birth, so that multiple times a day you need to lie down for an hour. You tell people about it and they just say "you don't look like you're in pain", or "yeah everyone has back pain", and they imagine you weak for being so affected by it. As a child you were raised that it's taboo to manage your back pain, so you often have to make up excuses to go secretly lie down.
You even believe yourself that you are just a failure for needing to do this when everyone else can soldier on. You have to turn down hikes, trips, even relationships; if a friend invites you over you need to make sure there's an exit strategy, or at least a place you can secretly take a break if you have a spike.
This is what my life is like. I have been trained to look like I'm not in pain -- to hide my shutdowns and meltdowns and hypersensitivities, through willpower or through physically removing myself. It affects my work, my relationships, and my daily life, but the worst part is just the pain itself.
- stepbeek 5y agoI’m sorry this has happened to you. I’ve had a chronic sickness for three years now and whenever I’m impacted by it I’m met with polite confusion. “Oh, isn’t that over?” I can’t imagine what a lifetime would be like.
- neal_jones 5y agoYea, I pretty excited when I found out because it provided answers and tools, but mentioning it to anyone did not result in similar excitement, instead some took it almost like an insult to them. Didn’t take long before I stopped talking about it.
- sangnoir 5y ago> "you don't look like you're in pain" You don't have to imagine this - it happens a lot today. A large number of painful gynecological procedures are done with no pain management besides the doctor saying "This might pinch a little".
- nsajko 5y agoNo opinion one way or the other regarding this specific case, however I'd like to note that both general and local anesthetics can have serious side-effects. There were even relevant horror-stories in HN comments. A specific issue is that anesthesiologists are not necessarily available for all medical procedures. Perhaps it's better to err on the side of pain if the gynecologist is alone? EDIT: "After simple dental surgery, a man lost his ability to form new memories" https://news.ycombinator.com/item?id=24566568 https://news.ycombinator.com/item?id=24566568
- TylerE 5y agoOne thing that has always baffled me is why nitrous oxide isn't commonly used in these sort of situations. There are formulations available (mixed 50/50 with oxygen) that don't require an anesthesiologist.
- lazyasciiart 5y agoThe vast majority of gynecology procedures are scheduled - the fact that they don’t intend to do pain management and therefore don’t plan so that anesthetists are available is an effect of not doing pain management, not a cause.
- nsajko 5y agoWhat about cost, though?
- lazyasciiart 5y agoBasically orthogonal to your argument.
- nsajko 5y agoMy intended point was that raising the cost of a procedure makes it less accessible.
- benwills 5y agoI was diagnosed 3.5 years ago, the week after I turned 37. It's really interesting to see/hear/interpret the range of responses from people. Some people aren't surprised by it at all. Others completely disagree with the diagnosis and will say something. And others will obviously disagree and not say anything. And some even responded in ways that don't make much sense at all. (One of my best, long-term friends responded with "well, you've always been a great friend to me!" when I texted him the diagnosis). And others will just not say anything and will avoid the conversation. I'll say that the myriad of responses is insanely confusing and, for me, definitely contributed to my confusion/isolation after the diagnosis. It took a long time for me to counter other people's completely-uninformed opinions, but what I've found to really help is to remind myself of the facts: 1 - I received this diagnosis from a trained professional. The process was long and thorough, and I believe I did an equally sufficient job of representing how I may fit on the spectrum as well as how I may not. 2 - The ADHD assessment I took (two years later and, again, with a trained professional) also identifies ASD and the results of the assessment skew in exactly the way it most commonly skews for those on the spectrum. 3 - The people who knew me before I really leared to mask are the ones who see my diagnosis as obvious. The ones who knew me after I started drinking (I quit drinking 8 years ago) and while/after I learned to mask are the ones who doubt it most. 4 - The ones who doubt it have absolutely zero training and have done zero research into what it actually means to be on the spectrum. 5 - Exes (and my girlfriend at the time of the diagnosis) who I have actually lived with, the ones I still talk to, are the least surprised by the diagnosis. One, who is a therapist, even suspected it. 6 - The "most autistic" things I do, I keep out of the view of others. So, of course their perception will be skewed. 7 - Alcohol can really dampen the social aspects of ASD. I used to be a frequent and heavy-ish drinker in social situations. Which led me to quit, years before my diagnosis. As soon as I quit drinking, my social life and friend circle tanked. Anecdotally, this seems very common with folks on the spectrum who also drink socially. I don't know if that helps, but it helped me tremendously to lay all of that out in a way that reduces the impact on my psyche as a result of others' doubt. And it also took me _years_ to really see that objectively in a way that's only beginning to put up an emotional/psychological boundary between what my uninformed friends believe and what I know to be true. On top of that, if anyone wants to doubt me again, I have a solid list of things I can present. And they can choose to believe them or not. But I am now far more clear on where I stand and can be far less swayed/affected by another person's doubts. I hope you're able to find a similar steadiness in it. It can be really hard, but if you can work through the process, it might be pretty rewarding and validating. * Edited for clarity.
- Consultant32452 5y agoI make light self-deprecating conversational jokes about being autistic. "My autism is freaking out at the lack of specificity here, can you help with more concrete language?" For people who understand autism, they get it, and for the people who don't they think I'm just using the word casually like people who joke about having OCD.
- darkerside 5y agoDo you mind educating me with what that means? Does autism make it harder to understand abstract concepts?
- glacials 5y agoAutism makes it hard to deal with ambiguity.
- darkerside 5y agoI am feeling that pain right now! If you could share an experience I feel like that would really help me understand. I'm probably in some ways like a fish in the water of ambiguity, so accustomed to it that I don't think twice about things that could pose serious confusion to others.
- glacials 5y agoSure! As an example, a friend asks "Do you want to grab a drink tonight?". My day is free, and it's morning when I receive the message. I reply "Sure! Where and when?". They don't reply. I am now paralyzed for the rest of the day. My brain can't snap my schedule into place, so everything I do is a possible conflict with this promise I just made. Even if it's morning, something may happen -- another invitation to do something in the afternoon, maybe -- that I can't resolve because I don't have the necessary information to. This causes overwhelming anxiety. My entire brain is blocked on resolving this ambiguity. I can't do hard tasks like programming. I can't pay enough attention to my favorite shows to watch them. If I do, I'll end up rewatching them later because I didn't retain anything. Reading a book is out of the question; I'll just end up rereading the same paragraph 20 times in a row then giving up. The whole day, zapped out of existence. To others I will appear distracted, hard to hold in conversation, irritable, and in a hurry. Internally, I'd equate it to the feeling you get on a once-in-a-lifetime special day, like your wedding day or a test that could decide your entire career. It's just that I get it from really small things, and all the time.
- uid-nobody 5y agoI have had depression for pretty much as long as I can remember anything at all and this feels relatable. I can't say anything smart or helpful though.
- adreamingsoul 5y agoThis has been a life long struggle for me and I empathise with the frustration and loneliness. From my own experience, 9 out of 10 people will not understand and will say anything to “be polite”. But those few people who do listen (even if they don’t understand) are worth finding.
- FlyingCapybara 5y agoReading your comment breaks my heart. Sorry, it's going to be a long post, and my english skills are questionable... I'm 35. French. My family used to see the same allergist since I was a kid. One day, after a really bad nose/eyes allergy attack, he told me it was probably psychological. Well yeah, it's kind of psychological when you are losing your mind with your eyes and nose being painful + the headaches. I'm a peaceful guy but the "psychological" BS with his arrogant attitude was too much for me, I was literally about to grab him... I just left without even paying him. This idiot had the reputation to be the city best allergist, good thing he retired some time later. I was something like 23 or 24. Most internists I saw between 21/25yo didn't really cared about my condition. I guess it was too difficult to find out what was going on with my chronic colds/allergies, my obesity, my permanent tiredness, depression... Most psychiatrists I had between 21/25yo were absolute trash, the last one tried to calm me with cyamemazine, a strong antipsychotic. Probably the worst time of my life, imagine all the symptoms I listed before + the sedative effects of the cyamemazine... It's like you don't even feel alive anymore. I hit rock bottom when I was 25. I had severe allergies without even going outside, always tired, 1 or 2 naps every day, suicidal thoughts... I couldn't work anymore to survive. Well, good thing it happened when I was 25, because in France you can't have any benefit welfare before 25 (except housing welfare). Before 25, sometimes I used to survive with like 200 euros per month, so the 500 euros "social solidarity benefit" was a lot of money to me. I was a mess since I was a teenager, but for the first time of my life I met someone from the social services who took care of me. She was used to this kind of situation and recommended me a good internist. I had to "wait" to be 25 until a good internist sent me to a competent pulmonologist who diagnosed with sleep apnea. This is why I was always tired... My internist also sent me to a good allergist. I finally got skin tested (the family allergist never tested me...). I knew about pollen allergies, not for dust and mites... This is why I was sick all the time without even going outside. Some asthma too. Things were getting better after trying a lot of psychiatrist, but not great. The years go by... 2021. After seeing a good psychiatrist in a mental health clinic for the last two years. Things got better, she found the best pills "recipe". :o) But most important, she started to "understand" me. She knew something was wrong despite the fact I was feeling happier. She knew about my chaotic school years, my lack of concentration and focus, and I guess it became obvious when I failed 2 professional training courses this year. See where this is going ? ... Early november, she sent me to one of her colleague, a specialized psychiatrist. It was brutal, after studying my records and talking to me for 2 hour, he told me he highly suspected a ADHD (attention deficit hyperactivity disorder) and possibly an ASD (autism spectrum disorder). When we were walking to the reception, he told me he was "betting" I was probably around 120/130 IQ, smiling. I was like... Yeah, RIGHT... WTH is he talking about. :/ ADHD was plausible to me but I was skeptical about the rest Reading articles about autism or Asperger sometimes felt very familiar to me, but that's about it. The IQ thing ? Dude, I always felt stupid as long as I can remember. School was terrible. Rates, people, family, everything was terrible. Same as an adult, I always felt too "mental" to do anything "basic" but to dumb to do anything "better". My only good years were as a security guard on a large industrial site. Lots of night shifts, alone... Next steps : 3 appointments with a psychologist. A first meeting, the WAIS test the next week, and the results another week later. It was among the three longest weeks of my life. Waiting for the results was a nightmare. It's late november, ADHD is confirmed, heterogeneous IQ between 100 and 130... As far as I understood, I have good cognitive capacities, especially with visual stuff, but everything related to memory is terrible... It's such a mess I don't have a homogeneous IQ. It was weird to feel "smart" with the cubes and other visual test. At school, maths were my nemesis, but I remember having fun with geometry. They're still some doubts about an ASD. I was kind of shocked during the last appointment, it was a lot of information to handle. But it seems it's harder to get diagnosed when you're an adult. The psychologist needed to talk to my parents, my school grades, some specific medical informations about my childhood, etc. My mom is gone, I don't want to see my dad anymore and I have nothing about my childhood. If I want to find out about a possible ASD, she told me we could try a "social cognitive exploration" one day. I'll wait until I feel less lost... Early december. I'm finishing my 6 months failed professional training courses and the ADHD/ASD specialized psychiatrist put me on methylphenidate right away. "Concerta LP 54mg". "It's going to boost you up. Side effects are going to help you losing some weigh, pretty cool uh ? It's similar to amphetamines." Wait WHAT ? This is insane. I mean, nothing's going to change about human interactions etc, but it feels like my brain can finally do things without quickly ending exhausted. It's not perfect, but I don't feel this heavy "mental fog" anymore when I try to do something mentally demanding... This year was an emotional roller coaster. The 6 month courses probably were one of the worst experience of my life, content was boring, terrible teachers, toxic students, I ended up mentally broken... And then all of this happened. It's a bittersweet feeling. I can't put the last 6 months behind me, I can't forget how all this toxicity affected me. I feel really great thanks to the methylphenidate. Learning seems possible, I can finally enjoy things like playing online with my friends without feeling mentally exhausted after 1 or 2 hours. But sometimes I just lose it, thinking about how things could have been different with good parenting and earlier medical care. How to you start your life at 35yo ? I'm not even sure I'm going to live another 35 years. Sometimes I have flashbacks of my previous life, like in high schoool, some really nice memories like being sent to the school psychologist because they suspected me of drug use because I was tired and alone all the time. I think I never touched anything until my first beer around 21yo. Yeah, 21, this is how lame I was, but to my school I was probably a drug dealer. Good job french educational system ! Domestic violence, sexual abuse. My interactions with teachers/school psychologists/family MD/police/child protection services/etc were an endless failure. All my life I have been teased and bullied for being weird and lazy. At school, at home, in family meetings, at work... I don't even know if I really tried to hide things, I was just used to think everything weird or terrible in my life was just normal. How the hell are you supposed to understand something's wrong when you have no idea of what's good or wrong. You can't place yourself on a scale if you don't know what 0 or 10 means. So yeah, you spend years hearing people calling you lazy, unmotivated. The "where there's a will there's a way" people, the "you're just making excuses" people. Same story, I turned down everything, which can sometimes cause bad reactions from your "friends", which can make you feel even worse... This is why your post overwhelmed me. I felt this for decades. I've been doing a big cleaning up of my entourage for the last 2 years so I'm not going to have a lot of decisions to make about ADHD and a possible ASD. I'm just curious about how I'm going to use different learning methods so I can move forward. I don't know about human interactions... I don't think I can't say anything positive about this, there's too much hate in me. There is one thing for sure, you can't fix toxic people. Take care.