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30 People With Autism Describe What It’s Really Like

1.

While I live a pretty normal life I have a lot of issues with sensory sensitivity. Like loud noises, bright lights, certain food 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.

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 to “read” people, but we certainly do not lack human empathy. That needed to be said.

2.

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…

And I love children and children love me, they love to talk to me and ask questions, or talk to me about cartoons. 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.

Luckily now I am friends with an eight-year-old and she is awesome, loves LEGO, and we have a lot of talks about who is the best Disney princess, explorers (I told her about an explorer in LEGO, Johnny Thunder who explored tombs and she has suddenly decided to love the idea), and also about Doctor Who and time travel (the back seat of her car is a time machine when we go anywhere!)

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 cause people are aware of autism or accept autism, doesn’t mean they will make time for those with autism.

Friends make it easier.

3.

I am an autistic person with hyperempathy, and my husband (also in the spectrum) has very low levels of empathy. He certainly still cares a great deal about others, but he finds it difficult-bordering-on-impossible to understand people’s feelings or connect with them. He still has plenty of sympathy, though.

I, on the other hand, am kind of like an emotional chameleon. I can’t help mirroring the emotions of those around me, and it’s very tough. I want to be helpful and supportive when I see someone having a hard time, but when I start to adopt their negative feelings, it becomes very difficult to help because now I’ve got all this stress of my own to deal with.

4.

I have huge trouble telling someone they’ve made a mistake. I’ve let people go calling me by the wrong name, or I change the subject in conversation because the idea of making someone feel bad for making an error is intolerable. That one’s a bugger to get around. It was worse as a teenager, I was once frozen to the spot for 3 minutes outside a teacher’s door because knocking would interrupt them. Never mind that I had to see them and that they were expecting it, it might slightly inconvenience them and it would be my fault. I’m glad that stage is mostly over with.

5.

Emotions can be more extreme, especially the negative ones, unfortunately. There is a sudden trigger and a switch just flips. I usually take a step back and take a breather to get myself to baseline then.

This also ties in with control for me. I have a hard time with unfamiliar situations/places or if I have no way out. What’s normal there, how should I behave, what if I do something wrong? What if I need a moment to myself where do I go? I would love to travel but everything about it can get me into a panic. But once I’m there and have assigned a spot as my place to collect myself I’m fine. Getting there is the hard part.

I also want to be really, really sure someone likes a present. I am horrible at giving a gift without them knowing what it is. I only not check if they would like it if there is no doubt in my mind that they would love it.

6.

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.

7.

For me, it’s being different enough to be noticed and alienated from other people, but being similar enough to know it and hate yourself for it. I’m high functioning, but I was always a little bit less developed than others my age and was always ostracized for it. Got bullied out of high school by former friends when I finally told them I was high functioning and haven’t ever finished.

Now after isolating myself for seven years, I have no idea how to make friends because social interaction is something that does not come naturally or easily to many of us. You can try and try to make friends but there is always the little voice reminding you that you are different and you are always paranoid that others notice. So you begin to hate yourself for it which then is noticed by others who then don’t want to be around you, further convincing you of your differentness. It is the most lonely feeling in the world to know how you are supposed to act and not be able to do so, as hard as you try. I would not wish it on anyone.

8.

I have thoughts that no one else has, and when I articulate those thoughts, be it a joke, reference, even just a sentence, I will more often than not get a vacant stare in response. It’s actually getting a little irritating if I’m honest, having to try and explain in terms they’ll understand before dismissing the conversation entirely because I’m fighting an uphill battle.

9.

Imagine you just started a new job, but you didn’t get any on-the-job training, the company has a very different work ethic to what you’re used to, the environment is different, the people are unapproachable, everyone seems to know what they’re doing but you, nobody seems to accept that you don’t know what you’re doing, they just get irritated with you, and it’s assumed that you can just ask people for help if you’re struggling… but everyone is scary to approach and makes you feel inadequate. That’s what it’s like for me anyway

An extension to this metaphor, also imagine that everyone else loves their job but you’re only doing it because there are no other jobs going and you need the money. Ideally, you’d be doing something else but it’s not an option, this is the job you have, like it or not

10.

I’ve grown to fear and hate contact with people because of the stares/bullying. But I’m not afraid of children or small animals. My dog is my only friend.

11.

I’m in high school and it seems that most people are on one page and I’m in a different book.

12.

I have a good friend who is autistic. 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.

I had this piece of garbage car once, like it was REALLY bad, and sometimes it would die, and the radio buttons didn’t always work, and it had steering and breaking problems, and the clutch had problems too. Before I got rid of it, I’d always get [mad] driving it because I knew what it should be capable of doing and I knew what I was capable of doing in a normal working car, but 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 with a working mind. But he couldn’t. He was trapped in his body and mind like I was in that crappy car. Really broke my heart… I don’t know how he does it, I certainly couldn’t.

13.

I was diagnosed with Aspergers at the age of 11.

I feel like I’m part of a play where everyone has the script except me.

14.

So if I’m speaking to someone with autism, what can I do to make you feel more comfortable while taking to you?

For me, I just want to be treated with dignity, patience, and respect. Be aware that I’m probably agonizing over your social cues that I may or may not be interpreting correctly or even noticing.

15.

I think I’m reasonably socially competent but it just takes so much effort. I have to think through every social move and feel overwhelmed after. I have to prepare for interactions. I hate small talk. I feel incredibly uncomfortable if people touch me, or stand too close to me or behind me. I have a mole on my cheek that has changed recently so I went to get it checked out, the doctor I’d never met before touching my face and peering intently at me and the bright lights in the office pretty much wrote my morning off by killing my threshold for anything else. I’m terrified of people’s reactions to me and actively dislike meeting new people because I can’t predict them/haven’t worked out the formula for what they like to talk about/their humor, etc.

True relaxation for me is sitting in my room, by myself indulging in whatever I’ve become obsessed with. It’s currently hockey, and I just love getting immersed in it, reading statistics, team histories and player profiles etc.

16.

It’s really, really lonely. To be desperate to go out and be with people but at the same time have no idea how to interact with them. Left out of every conversation. Completely ignored.

The benefits are basically being able to concentrate on anything and really excel at it. Also not falling apart in an emergency, because the emotions of the situation don’t really come into play.

17.

Social interactions that come to others naturally require a lot of thought and planning in my situation. For lack of a better analogy, I have mental checklists for every social event under the sun.

Obsessions are amped up from non-autistic people, as are following rituals – every night when I get home, I have dinner and watch The Simpsons, no ifs, ands, or buts.

I work as a chef, and my supervisor and I have a certain codeword (traffic) that if I mention it out of the blue, it means “I need to cool off for a few, I’m getting overloaded here.”

18.

The therapist who diagnosed me once told me this story about how one of her patients basically thought “Why is everyone so […] weird?” for about 17 years before he got diagnosed because he genuinely didn’t realize that he might be the odd one. That’s me, as well.

19.

I’m coming up on 40 years old in a few months. I feel like I have learned enough of those things, that I can now pass for completely normal. I’ve got a wife, I got a place, I keep my bills paid, I haven’t had to move in over 4 years which is a new record for me. At worst, people think of me as an under achiever. Nobody has any ideas. It can be done, but it does take time. A lot of time.

20.

Socially I’ve managed to cope with my autism, I was quiet in middle school and a little bit of high school. I figured out I’m best at making myself look ridiculous in front of people. I now just laugh at myself and I seem to fit in, however, most of the time I don’t really catch on to my friend’s jokes or opinions.

21.

I love people, but people have to make exceptions. Being my friend means having to look after me. Being my friend means understanding I can’t meet you at the mall, you have to come to my house and take me. Being my friend means accepting I won’t know when I have caused emotional harm through being too blunt or saying something honest when you wanted a lie.

22.

Oh man, change could be so hard. When I was younger I hated it when my parents would redecorate the living room. Took me weeks to get used to and accept it as the new normal.

23.

Filtering useless info is exhausting, and I feel lucky I can even do that even though it costs me extra energy. A club is a nightmare, way too loud and too many people and lights. On the flip side when it’s super quiet my mind focuses on the background hum, equally distracting.

24.

I never experienced an invitation to anything till I was older. Even if I don’t want to go the feeling of being included is the best feeling ever. Like my friend, she had a party just for me. She invited 3 people to play board games and they chose board games that I was able to understand. It was the first party I had ever been to. I was 25.

My friend invited me to the board game night with an actual invitation it said “Time: Place: What to bring:” It made it structured and it was the best adventure I ever had because it was my first real social adventure.

25.

For me, its loud noises, especially bangs, screeches, high pitch noises from electronics no one else seems to hear. Constant repetitive sounds like beeping, there are other sounds too! I don’t like a lot of music because of it. Sometimes, it’s sounds others cannot really hear, or that their brains have tuned out. It can be strange explaining to someone you do not like their favorite song because there is a scratching noise from a guitar pick on a guitar that they have tuned out or is so minor they don’t notice.

26.

I have high functioning autism as well as anxiety so some of this may be the anxiety but I find it really hard maintaining friendships at all. For example, I left 1.5 years ago and haven’t spoken to one of them in over a year because I quite honestly didn’t know how.

I also find communicating really hard. It takes a lot of effort and I would find meeting someone new really hard with me having no Idea where to go past hello and me getting a stutter is also quite likely.

I don’t cope well with changes from a routine. For example, I will eat the same meals each day.

27.

It’s hard, not only socially but also in school. I can’t understand what the questions are asking me because I always interpret it in another way. Especially the questions like “Why did the author write this, how does the author feel?.. etc.” I would always question if I was reading this answer correctly, and my teachers would get frustrated with me due to the excessive amount of questions I asked.

28.

If I said to you, I am done talking for now and wanted to stop talking, it doesn’t mean I did not like you and it does not mean I did not enjoy the talking. Just sometimes it’s a bit overwhelming and I need to stop for a while before going back to it. Some people take it as that I did not like them, or that I am rude. Then I get sad cause I can’t go back to talking.

29.

My current girlfriend didn’t realise that I have high functioning autism – partly because it’s not severe, but also because basically all of the interactions with her have been ones that I’ve been through many, many times and I roughly know how I’m meant to react, even if sometimes I don’t know why I need to react that way. it’s a huge help but also a hindrance because some people just refuse to believe me until they spend more than a few minutes at a time with me

30.

The Internet has been one of the best things ever for autistic people. It is so much easier to communicate through text devoid of all the body language and vocal tones…

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