Autistic People Are Describing What Autism Is Really Like For Them And What They Wish Everyone Knew About Autism
"People have the misconception that we 'lack empathy.' We often have a hard time 'reading' people, but we certainly do not lack human empathy."
While autism is more widely recognized today than in the past, it's still not often fully understood by neurotypical people. In r/AskReddit, autistic people opened up about what autism is really like for them — and what they'd like neurotypical people to know about autism:
1. "People who are 'high functioning' or 'don't look or act autistic' are still having a hard time. A lot of us do this thing called 'masking,' where we basically act as if we are neurotypical based on the stuff we learn from others. It is very exhausting to keep up that fake persona."
"The effort of masking is a huge drain of resources. Imagine if you lived in a world of autistic people, and any time they see you do anything non-autistic, they like you less. They also will claim up and down that they would never treat you differently for being non-autistic. But you’ve had so many consistent experiences of losing jobs and income and social connections and opportunities, that you know you can never slip up and must maintain the mask at all times.
You can never bring this up or address it with any of the autistic people around you because they will become hostile at the suggestion that they are acting in any way unfairly.
So you’re essentially an undercover agent your whole life. An undercover agent with no home office, no training, no fancy spy equipment, no manual, no team, no country, no mission, just an intuitively-perceived imperative that you must maintain your cover at all times or face serious consequences.
This is what being a 'high-functioning' autistic is like." —u/intensely-human
2. "Ever hear of the game called Mao? It's very similar to Uno, but it has rules you can't know about. The only rule that you can explain to others is this one: Every time you break a rule you get another card. It's up to you to figure out the rules, by trial and error again and again. Plus, each person introducing their group to Mao may have their own version of the rules, as everything is made up by the one who knows how to play the game. That was the entirety of my childhood."
3. "I wish people knew that not everyone with autism 'seems autistic,' but that doesn’t mean they don’t struggle or don't have autism. Blending in, even though it may seem beneficial, just makes it worse for me because when you don’t seem like you're struggling, it's harder to get help. And when you do an 'autistic thing,' people might think you’re a freak."
4. "I'm not staring. I'm actually completely dissociating from my vision! I'm not looking at you, that thing, or anything. That's just where my eyes happened to be pointing when I went 'inside.' I also dissociate from my vision whenever I am actively listening."
"It wasn't until I was 19 that someone pointed out that I was always 'staring at their tits' whenever I was talking with them. No, lady, your tits are just 'down and out of the way,' where my face is always pointed. Nowadays, I usually have the presence of mind to add 'off to the left' to my 'down and out of the way.'" —u/Jarhyn
5. "It's not that I want to come off some way — angry or sad or whatever. It just doesn't come out right a lot of the time. It's like being tone-deaf and trying to sing a song you know. You hear it, you know what song it is, but you try to sing it, and it's just incomprehensible."
6. "If you're upset with me, don't be subtle. Don't drop hints. I will not read between the lines. Don't be vague. Don't lie. I won't get it. If you say everything is fine, I'll take you at your word."
"Just tell me if you want me to do or not do something." —u/nightcrawler616
7. "Often 'treating' autism means treating the symptoms. You learn how to make eye contact. You constantly pay attention. You expose yourself to uncomfortable situations. The more you manage to mask your autism, the better people think you are doing. However, like any person working too hard, this can lead to burnout. Like any burnout, our skills are then reduced. From the outside, we might then get a lot of shit because we suddenly stop making eye contact or talking normally."
"Girls with autism mask more often than boys, and therefore tend to have higher rates of anxiety and depression. Suicide rates are also much higher among autistic people." —u/bluecheesebitches
8. "Adults have autism, too. Seemingly all services for autism are for children. It's ridiculously difficult for me to get and keep a job because of it, among other things, and that fact is usually overlooked."
9. "We have feelings. We have empathy. 'You don’t look autistic,' is not a compliment. Telling us, 'Everyone is a little autistic,' doesn’t help."
10. "We are as diverse as neurotypicals, but, simply, our thinking pattern is a bit different. You don't recognize us on the streets because autism doesn't affect our looks, you notice it once you start interacting with us — just like you wouldn't recognize a left-handed person until they started writing or doing other activities with their hand. The word 'autism' comes from the Greek word 'autos,' which means 'self.' It describes conditions in which a person is removed from social interaction. In other words, they become an 'isolated self.'"
11. "Many people with autism rely on routines. Personally, routines help me know what is coming and plan things in my head for what possibilities may occur. I can't predict everything, but I can try to work out things that I think might happen and potential responses. However, this doesn't prevent me from thinking of what I should've said when I am trying to fall asleep at 3 a.m. and obsessing about it, just like a nondisabled person."
12. "I wish more people understood how terrified I am (and possibly others, too) that it will bar me from jobs, opportunities, and relationships — a normal life — because other people see us as lesser, as difficult, as not worth managing, or as broken. I feel like things are often harder just because people view me that way; it perpetuates itself."
13. "Something I wish my teachers knew when I was growing up: Me avoiding eye contact doesn't mean I did whatever they accused me of, nor does it mean I don't feel sorry, and it's certainly not meant to be disrespectful. It's just that I don't do well with eye contact."
"Also, I know my social skills aren't the best, and I do try to work on them. But not telling me when I do something wrong, and thinking that the mere fact that you're upset with me should lead me to realize what I did wrong and how to do it better — instead of just telling me — isn't fucking helping." —u/ConstableBlimeyChips
14. "Don't talk to me as if I'm a child. I was doing a course a few months ago, and I said something in response to what the teacher had said. She ended up annoyed with me, and even though I tried to explain what I had meant, she still talked to me as if I were a child. Even when I gave up trying to explain and said I understood, she didn't shut up."
"I'd also forgotten to put on the form that I'm autistic, so they didn't know for a couple of days. When they found out, she sat me down and told me how I shouldn't be ashamed of being autistic. I think she was a bit surprised when I told her I'd just forgotten and wasn't ashamed in the slightest." —u/MrRieper
15. "Let me give you a non-autism example. At eight, I was diagnosed as legally blind. Nobody else noticed because they thought all the weird stuff I did to cope seemed like weird little personality quirks or developmental disorders. When I got my first pair of glasses, I found out that there was a whole sense that everybody around me had had all along, that I hadn't — a possibility that had never occurred to me. I had noticed that other people could play catch much better than I could, they could navigate unfamiliar spaces better than I did, they could recognize objects from farther away than I could — but it never occurred to me that they had a sense I didn't have. I just thought they were smarter than I was. I just thought I was really stupid. So imagine how I felt when I found out that other people can (mostly, less often than they think) tell when they've hurt somebody else's feelings just by looking at them? But there are no glasses for autism."
17. "Feedback loop. Sometimes, things just get stuck in your head. Not just songs or movies but things you or someone else has said in conversation — which will then be repeated for no apparent reason. I catch myself saying the same things I've already said under my breath, but I'm not trying to understand the what or why of it. I just do it."
18. "Sensory issues are where things around you feel big but other people don't notice. It's like getting off an amusement park ride — you feel a jolt of excitement or stimulation, except it keeps going on and is uncomfortable. Maybe a better way to put it is the feeling you get when something scrapes against a chalkboard. Crank it up a bit. Now a bit more. That's how some people with autism feel when they are having sensory issues with clothes, for example. You just want to get out of the clothes because they are too tight or scratchy, or they just make you feel weird (not in a psychological way, but a physical way)."
19. "You know that time you said something stupid and everyone looked at you like you grew a second head? Imagine feeling like that every time you talk to someone."
"I am a high-functioning autist." —u/Making_Butts_Hurt
20. "There are a lot fewer girls diagnosed than boys, and they are also diagnosed later. Most knowledge about autism is based on boys. Boys also tend to be more disruptive, while girls are more likely to turn silent (and depressed)."
"I am one of those girls. I didn't get diagnosed until I was downright suicidal at 21." —u/bluecheesebitches
21. "Autistic kids grow into autistic adults. Just because we get better at not showing out autism doesn't mean we've 'grown out of it,' as many people think. It just means we've been forced to hide part of ourselves to fit in, and oftentimes, it comes at the cost of being able to fulfill all of our needs, or hell, even just being ourselves."
22. "I was diagnosed with Asperger's as a kid, which is grouped into the autism spectrum. Many sensory triggers, specifically sounds, are amplified for me. It’s a blessing and a curse. I have little trouble hearing people, but shouting can be very overstimulating. It's also very difficult for me to explain myself, and I often have a hard time conveying my thoughts. And then, there's the social aspect. Growing up, I was often singled out for not knowing what I'm 'supposed' to do socially — as if it’s an unwritten rule I was never told. It lost me a lot of friends as a kid."
23. "A friend of mine explained it like: Imagine you're meeting someone new, and right out of the gate, they go, 'I got molested as a child so that's kind of like a duck in cold weather.' You'd have a fearful mix of, 'Holy shit, WTF do I say now?' But also, 'Wait, what do they actually mean by that?'"
"And you get that feeling for almost every conversation, with everyone, forever." —u/DwarfDrugar
24. "I think the most important thing is that we are people — people who are autistic but also a lot more. There are as many autistic types as there are autistic people. None of us would be without autism, though. Although we get the struggles, obviously, it can be very hurtful to do autism research into eradicating autism instead of helping us — as if we are bad for existing. My greatest hope is then that more research will be focused on how to live with autism instead of how to live without."
25. "I worry when I tell people I'm autistic on a date that they’re going to bounce because they then think they’re doing the equivalent of dating a toddler."
26. "For me, horrible. I am lonely. I want to be around people so much. I love talking. They taught me to talk and forgot to give me others to talk to. I want to work, but I need supervision. I hit my head on things when I am upset. I hate that. My arms flap when I am excited, and people stare. People stare for other reasons, too. I love children, and children love me. They love to talk to me and ask questions. I would never harm anyone, but their parents act like their child is in danger. It makes me feel like I am a terrible person. So, I guess, in short: Autism is lonely. It can cause a lot of pain. It's like being trapped in a body that is only half-loaded. Just because people are aware of or accept autism, doesn't mean they will make time for those with autism. Also, I wish I could dress, shower, and care for myself better and go out on my own. I would go out every day."
"Luckily, now I am friends with an eight-year-old, and she is awesome. She loves Lego, and we have a lot of talks about who is the best Disney princess. Children love to talk to me about cartoons.
I told her about an explorer in Lego, Johnny Thunder, who explored tombs, and she has suddenly decided to love the idea. I also told her about Doctor Who and time travel. (The back seat of her car is a time machine when we go anywhere!) Friends make it easier." —u/UnusualSoup
27. "It's kind of hard depending on where an autistic person is on the spectrum. So, for example, if you encounter an autistic person that has problems with socializing, don't consider them to be this antisocial person who wants to be left alone. They probably might want people to hang out with, they're just too shy when it comes to asking."
"Or, at least, that's what happened to me." —u/SinfulSanative
28. "Unlike what some people might think, people with autism do find things funny. I just have trouble figuring out when something is 'conventionally' funny, and I don't understand some humor that others find funny because it makes no sense to me. Reading people's faces is the hardest — along with the tone of voice — especially if someone is jokingly yelling, for example."
29. "Some people with autism show no outward signs of it. One of your friends, coworkers, etc. could be autistic, and you’d never notice anything strange about them. Maybe they’re a bit shy or awkward in certain settings (in my case, group conversations), but nothing major. As a general rule of thumb, don't assume anything about an autistic person. Find out what they're like, and respond appropriately. Don't assume they have the same strengths or struggles as your autistic nephew or an autistic celebrity."
"I should probably clarify that I am only speaking for a specific group within the community here; people who don’t want or need special treatment (be it from friends or people with authority) just because they have autism.
As an autistic person, that’s how I feel. But there are also a lot of people with autism who depend on special treatment and couldn’t survive without it, especially people with low-functioning autism. It's a very broad spectrum." —u/AlPalpacino
30. "While I live a pretty normal life, I have a lot of issues with sensory sensitivity, like loud noises, bright lights, certain tastes, smells, and standing in crowds of people. These things make me feel a bit stressed out, resulting in various issues like headaches and digestive problems."
31. "While we're on the subject: Certain non-autistic people have the misconception that those of us on the spectrum would 'lack empathy.' That is simply not true. We often have a hard time 'reading' people, but we certainly do not lack human empathy."
"That needed to be said." —u/[deleted]
32. "I have a good friend who is autistic. Once, I had this piece of garbage car — like it was REALLY bad — that sometimes would die. The radio buttons didn't always work. It had steering and breaking problems, and the clutch had problems, too. Before I got rid of it, I'd always get pissed driving it. I knew what it should be capable of doing, and I knew what I was capable of doing in a normal working car. I just couldn't get it right in that car. My friend told me the way I acted driving that car is how he was in his head. He knew what his body and mind should be able to do, and he knew what he should be able to do in a working mind. But he couldn't. He was trapped in his body and mind like I was in that car."
"He rocks his body and bounces a little and can't help it. He can't filter his words very well. He wishes he could be the guy who lives with the flow but pretty much needs structured plans and has a hard time if anything changes.
He describes it as lonely, too, but also frustrating. He says social situations are just too alien to him. He can't understand others well. He says he knows what he wants his mind and body to do, but they just don't." —u/21Bees
33. "Autism is not bad. It's different. Autism comes with a different way of processing information, which makes us very good at details. We also tend to look at problems from a different angle, making us good people to give solutions. Many autistic people are very artistic. Many have special interests where they are extremely focused on and thus know a lot about them. If special interests and talents align, autism brings out genius."
"On top of this, we are very loyal and tend to dislike lies. Many of us also have a knack for animals, who we tend to understand better." —u/bluecheesebitches
34. "It's hard not only socially but also in school. I can't understand what the questions are asking because I always interpret it in another way — especially questions like, 'Why did the author write this?' 'How does the author feel?' I would always question if I was reading something correctly, and my teachers would get frustrated with me due to the excessive amount of questions I asked."
35. "My go-to analogy is to imagine being in a country where nobody speaks English, and you don't speak their language. You don't have a phrasebook, but you do have a translation dictionary. So you are speaking the words but the syntax is way off, not to mention accent and pronunciation. You might think you're making sense and communicating well, but really, people will be confused by you."
"To clarify, I am talking from experience as someone with Aspergers Syndrome. Those elsewhere on the spectrum will of course have different feelings." —u/mrhelmand
36. "People like to infantilize us. I'm 30. I can't drive. My parents usually drive me to doctor's appointments. They come into the appointments with me sometimes, especially on the first visit with a doctor. Whenever the doctor asks a question, they ask my parents. My parents then direct the doctor to me, I answer, and then we continue."
37. "I have high-functioning autism, as well as anxiety. Some of this may be the anxiety, but I find it really hard maintaining friendships at all. For example, I haven't spoken to one friend in over a year because I, quite honestly, don't know how to. A bit of another side effect is, at the moment, I have no social life. I don't know how to keep one. The last one I had was at school, and I wouldn't describe those friends as close since I never saw them outside of school. I don't know how to meet people, and I also find communicating really hard. It takes a lot of effort. I would find meeting someone new really hard because I have no idea where to go past hello, and I'd quite likely begin to stutter."
"Additionally, I don't cope well with changes from a routine. For example, I will eat the same meals each day, and going off of those is really quite stressful.
I am also really bad with emotions. I rarely talk about them at all (and won't unless I'm prompted explicitly). I am really oblivious on the whole and really can't explain it — it's a bit like trying to explain what left is to someone with no place to reference.
What comes naturally to most people takes a lot of learning for me, and I always felt a step behind, if not further. At the moment, at least, I would love to be just a normal person and have this sort of stuff come naturally.
All in all, I would say it's a bit lonely and frustrating when I notice. I am quite happy most of the time, but just the smallest thing can hit and change that. I am doing what I can to get better, but it takes a lot of effort for what is for most people as simple as writing." —u/Hammelj
38. "It's confusing. People with autism love repetitiveness, we love timetables, and we like things to be a certain way each time it happens. But life isn't like that. Things are different every day. The things that other people don't tend to notice are different are blindingly obvious to us. We like routine, and when that doesn't happen, it's upsetting. The world seems almost like a natural conflict to this mindset. And it's tough, because it's almost like your brain against the world, and your brain isn't quite ready for it yet. But you can learn to cope fairly well.
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