Autistic People Are Describing What Autism Is Really Like For Them And What They Wish Everyone Knew (2022)

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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." 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." 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." 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." 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."

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."

u/jakobebeef98

"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

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

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

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

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

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