What it feels like to have autism

Post Reply New Topic

Hi guys,

one of my friends realised he was autistic last weekend, and he's been busily explaining everything that's ever happened to him that he didn't understand ever since. I've spent a lot of time thinking about my experiences as an autistic person and growing up without knowing I was, and I've just written this article on it.

http://www.sarahmcculloch.com/blog/real ... ic-person/

I was wondering how accurate you thought it was for the way you experience autism?

Sarah

Update: Ok guys, I don't think you've read the article and I think you're too used to researchers coming and asking you abstract questions about autism that are meaningless.

So, I am autistic, and I have just written the article above as a way of conveying how I experience autism. What I am asking of you is whether you feel that that more or less sums up the way you experience autism. I obviously know how I feel, and some autistic people have told me that this article sums how they feel quite well, but I wanted to ask a broader audience of autistic people to get more data. I don't stim, for example, so for people who do that the article is less relevant. But maybe you struggle with relationships and how to get other people to understand you: this would make the article more relevant.

So, please don't tell me I couldn't possibly know how being autistic feels and it's impossible to describe. I am autistic, I live an autistic life every day, and I just had a 3200 word attempt at describing it. What I want is to know what aspects of autism you and I share to a greater or lesser extent.

This means you have to read the article.

Last edited by Kit920 on 28 Nov 2011, 4:44 pm, edited 1 time in total.

Hi! I'm an aspie, which means I'm kinda halfway between 100% autistic people and 100% neurotypical folk. What I feel is... well... out of tune from everybody. It's as if the whole world is mad and I'm the only sane person. When there are crowds of people, I feel strange, I don't know how to act, I don't know how to talk, or what gestures to do, or how to stare at someone. Those things you do in such a natural way, I must learn. I had to imitate my peers in order to blend in in society. And although I've kinda found my place on Earth, I still feel different, and people notice. I can also hear sounds louder, and many objects feel horrible to touch. I also feel the need to stim, particularly when I'm nervous. I sway from side to side and twirl my fingers and do stuff. And whenever someone hugs me or touches me, I feel oppression and the need to feel free, to regenerate alone and be myself, without forcing anything, without draining myself socializing.

Look, this will help you.

[youtube]http://www.youtube.com/watch?v=s9eATBV-_lg[/youtube]

Well I have problems interacting with people and being in crowds and social situations-I see the world in a very narrow range of view-take a paper tower tube and look through it and that is how I kind of see the world-I have a hard time understanding peoples motives or choices they make and I have body tics and unusual motions that I make and always feel alone and ignored in a crowd of people-I also have people turn away from me at picnics and parties and no one even comes up to me to find out anything about me because of my looks and that doesn't help my social anxiety and self esteem. I can't understand why people cry or get mad or make any kind of public display of emotions but I get upset and cry about stuff all the time and also have meltdowns/shutdowns when overwhelmed.

I can share something right now, which gives an idea... One of my traits among my high-functioning autism issues, is that I despise anyone in my space, near my belongings, sharing my food, etc., and I have an old friend (NT) in town staying with us a few days. We live in a very large house, but it still feels like he's stuffed in a dog crate with me. He is 100% respectful of property and good manners, so there is no logical reason in the NT world why I wouldn't be perfectly happy to have company over Thanksgiving weekend. But in fact, I would much rather not have any guests... ever. I did the unthinkable (for an Aspie) yesterday, and got the courage be hospitable by inviting him to ride one of my motorcycles for a Sunday afternoon with me, and we had a great time. I had to really bite the bullet to lend him a helmet, and in fact I think that now it has been worn by other than my own head, I'm going to make a gift of it to him for future visits with riding. I know it's ridiculous to be that way, as he has just as clean a head as I have, but it's just weird now for me to wear it again, and it's even weird for me to ride that bike next time. I will, of course, but the whole point is that for me it feels weird, and for an NT I believe it would not.

Charles

To paraphrase Adam:

"What does it feel like to have Asperger's?"
"It doesn't feel like anything, it just is!"

An alternate response would be, "I don't know, what does it feel like not to have Asperger's?"

I know that none of this probably comes across as helpful, but honestly, I don't think I can describe to you what's like having nothing else to compare it to.

It feels like... wearing a thornbush for clothes. Gaaaaah, so itchy.

Before I knew what it was, it felt like the whole world was full of weird people who hated me for some unknown reason, it also felt a lot like "I can't seem to meet any normal person, who have I ever met who was normal??"
After knowing, it's a bit more comfortable. There ARE people like me out there. The world is not confusing anymore. Still too loud, but there's an order to things.

To me, compared to an NT, it feels like my brain needs glasses.

i've always known i was different from other kids but didn't understand why, or how. it was very strange, because i didn't know i had it as a child, teen, or young grownup. i knew other people could do things i couldn't, like better motor skills, ability to remember faces and read between the lines etc. i heard and read and watched TV when they talked about how love and marriage and having kids makes you happy, and i thought i might give it a go to chase away the blues. but i could never imagine myself being married or a mother. i knew instinctively i wasn't cut out for it.
i knew my brain didn't work the way other people did. i just knew it. others don't pace back and forth and flap their fingers and don't react to noise that way and don't have ocds etc...
there were many things others could do and i didn't and i felt so inadequate and it totally ruined my self esteem.
it's like living in another planet. it's like living among aliens.

That's basically how I answer this. I don't know how it'd be like to be anyone but myself. There really are traits of mine that I hadn't realized were abnormal until my diagnosis, despite having identified with Asperger's for almost a decade before my diagnosis.

Ok guys, I don't think you've read the article and I think you're too used to researchers coming and asking you abstract questions that are meaningless.

So, I am autistic, and I have just written the article above as a way of conveying how I experience autism. What I am asking of you is whether you feel that that more or less sums up the way you experience autism. I obviously know how I feel, and some autistic people have told me that this article sums how they feel quite well, but I wanted to ask a broader audience of autistic people to get more data.

So, please don't tell me I couldn't possibly know how being autistic feels and it's impossible to describe. I am autistic, I live an autistic life every day, and I just had a 3200 word attempt at describing it. What I want is to know what aspects of autism you and I share to a greater or lesser extent.

This means you have to read the article.

I think that makes a lot of sense. I understand that feeling.

It makes life so miserable. It makes you feel like you're doing something wrong all the time. It makes it feel like NTs are allowed to be rude, but if you accidentally be rude, you get hollered at.

Get this: You're not allowed to go upto someone and say something like, ''you're annoying'', because it will offend them, so you just got to keep it to yourself. But it seems OK for others to come upto you and say, ''you're weird'', which is also offensive. So it leaves you all confused, and then you end up being crapped upon by other people because they're allowed to say whatever they want to you but you're not allowed to say stuff to them. Wanna live a life like that? I don't think so. So, NTs, please don't waste your time wanting to know what such a cruel disorder is. Enjoy being NT, because you can do what the hell you want and get away with it.

Also you get yourself involved in an interest, then when something happens to change it beyond your control, it is REALLY horrible. I'm obsessed with a certain bus company, but there is one bus company what I hate which luckily my bus isn't in, but they do swaps all the time and I think I will kill myself if I see my bus coming round the corner in the bus company what I hate. I just wish I wasn't so obsessed with this company in the first place, but as an Aspie, seeing the bus-drivers in this company and writing stories about them really makes me feel happy and secure, but if that goes, my happiness will go, because I'm a more out of sight out of mind person, like most people are.

Last edited by Joe90 on 28 Nov 2011, 5:50 pm, edited 1 time in total.

That's /your/ autistic life though, not generally being autistic. My experiences have been entirely different from yours. You list questions that come up if someone invites you somewhere, I don't have a list of questions like that running through my head, its not anxiety about the situation that causes me to not go somewhere. Being overwhelmed for me, my brain is more often just blank and blocked than having a list of questions and worrying about them running through them.

I can't compare my life to one where I didn't have autism. I don't know what it is like to not being autistic, and cannot make that comparison without something else to compare to. I can explain parts of my life that people say have something to do with being on the spectrum, but that's not what it feels like to have autism, that's what it feels like to be me, an individual who is autistic.


I think the big difference between you and me is that you're more anxious, while I'm more overwhelmed. Anxiety exists but its not the central thing to me.

I'll however agree that certainty is a big thing.

That, Tuttle, was totally what I was after.