How does it feel to be autistic?

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At least with "how does it feel to have an autistic child?" you lived some part of your life without one.

Seriously, everything is relative. How does it feel to be autistic? How does it feel not to be autistic?

I mean... sometimes it feels great. Sometimes life is great. Sometimes the weather is beautiful, sometimes there's something interesting to read, sometimes I can work on something useful. Sometimes it feels awful. Sometimes people won't leave me alone, sometimes I'm in pain, sometimes my dreams seem impossible. But I'm pretty sure that description applies to everyone everywhere.

On the other hand, I want to say thanks for asking. Thanks for going to the people who would know. I do know how I feel... but I don't know for sure which parts are shared and which aren't, and for the parts that aren't, some I don't know how to describe. May I suggest that it might work better to look at scenarios where autistic people act in ways you don't understand and post here asking how we would feel in those specific situations?

Well it started just fine for me. Did great in school and had enough friends and everybody loved me, even though I was quirky. Then I moved to a more "normal" area and soon I concluded "people here are really different".

So I just thought people are all different and it's futile to try to understand them. They're random, and weird, and seem to like completely boring or crazy things (i.e. drinking, gambling, sexy with complete strangers, being told what to do without thinking), and there's not much logic in their thinking or actions. They cry at weddings and laugh when someone fall and hurt themselves, how crazy was that?

It's not until the last few years I finally got that it's not them, it's me that's the different one. It's like discovering the sun didn't go around the earth, it's the earth that's spinning. Oh well, I still don't think there's anything "wrong" with me. I'm just different from most people (and they still seem quite random and crazy to me). It's all perspectives.

My kids are both Aspies and DH is kinda borderline, so for our family everything is just peachy. We might seem like weirdos to others, but then we don't really care.

While I wouldn't know how to describe how it feels like to be an autistic adult, since I've built up enough NT emulation skills to be able to fly under the radar in a lot of situations. But the following exercise will help create world that I experienced as a child.

> Put in a strobe lights in most rooms of your home, with each light running at a slightly different frequency.
> Hang a few frightening decorations in one or two rooms, and illuminate them with black light.
> Set up a speaker to play short recordings of scary sounds at random moments, and a high-pitched buzzing sound the rest of the time.
> Instruct the people living with you to respond to 80 percent of what you say with one of the following: "what are you talking about?", "are you a baby or something?", "stop saying stupid things!", or "you have to give us nalehmosh optsupp*, not be difficult!".
> Tell everyone to accuse you of whining whenever you tell them about a physical pain you're experiencing
> Hire some actors you don't recognize to slap you, insult you, trip you, and grab your things at random moments, whenever you're at your work or school
> Instruct your boss or professor to accuse of "not trying hard enough", "not applying yourself", or something similar, even when you're working your hardest to exhaustion
* nalehmosh optsupp - this is the phrase "emotional support" with syllables scrambled, to make it deliberately unintelligible, to showcase how confusing it can sound to autistic kids

Obviously, I'm being somewhat facetious here, and this comes from an article I read; it talked about an outside group that came to a school to educate students about autism. They did something like this, except they only used the non-human parts of what I described, plus a tape recorder that blurted out "loser" at random intervals; I made up the rest myself.

To be perfectly honest, that sounds like an awful simulation.

The question that you ask is huge.

One thing i wanted to try and describe, is how i see sensory problems. It seems like this symptom varies most from person to person however, so I can only speak for my own experience.

It's like you travel everywhere with a group of 20 some odd 4yo kids. They all are constantly fighting to grab your attention and point out the first thing that catches their attention. It's all very sudden and jarring, because as soon as you look at one thing, they are tugging on your arm, trying to get you to look at something else.

it's not really a verbal monologue, more sort of quickly changing pictures. If it were verbal though, walking down a busy street would equate to:

"there's a bird in that tree","there's a crack in the sidewalk","I smell smoke","that person has yellow teeth","why is that car honking?","That person is looking at me","oh thats a mannequin", then you trip over a crack in the sidewalk because you did not pay attention to kid #2.
(run time ~30s)

The kids will tend to only point out something that catches their eye once. Familiar places are nice for this because they will ignore things and you can finally get some peace and quiet.

Yet if you walk into a place that you are accustomed to and people have moved things, that's another story. As soon as you step into the room, for every item that has moved there is a kid pulling on your arm and yelling "(item)!, look!, It's different!", clamoring over one another and speaking at once.

Hi guys and thank you so much for all of your responses. Yes I agree my question was far too narrow and yes what does it feel like not to be autistic? Dame hard most of the time as people are strange things.

What I am trying to find out is how might Abi be feeling and then maybe I can help her. I feel that if we could isolate us from the most of the world then everything would be fine. Abi is protected now by us as she is only 3.5 years and I am scared for her future as people are so cruel and misunderstand her. She starts mainstream school this year - OMG!

The things I would like to try and understand are her sensitivities mainly, why does she feel the need to push other children when I know she wants to play with them? Why does she say 'naughty boy' and point crossly at a child instead of saying hello? Why does she head lock her poor little sister instead of giving her a hug and I know that is what she is trying to do? Abi craves an overload of sensory input and loves to leap around. She has such a strong desire to be liked by other kids and rushes in to meet them, but she has no idea on how to communicate with them and pushes everyone away, she looks so lost when all of the kids have disappears. How can I help her???

I really want Abi to be Abi, but I want to help her change the things that frustrate her.

I think you are talking about two different things: a problem with communication, and sensory-seeking behavior.

Not sure how to get inside your daughter's head, but maybe offering her social stories and scripts will help? If she is acting in a way that's not getting her what she wants, she will probably be open to changing it. Maybe going back to old-fashioned PECS to see if she can use the pictures to communicate why she's reacting to kids differently - I'd be curious about that greeting, myself.

I don't remember being 3, but I can tell you what my son does: he holds on to information far, far longer than other children do. If he saw a child break a rule, he will NEVER forget that, especially if it upset his sense of justice. If someone taught him something inappropriate, it takes him a considerably longer time than other kids to re-learn the appropriate response - I wonder if maybe somebody who wanted to play with your daughter pushed her, and she's internalized that as a "script." (Maybe not even in a mean way - maybe you were roughhousing with her?)

The sensory-seeking stuff is tough, and I don't have my brain quite wrapped around it - our whole family is very affectionate, which I think really means we are deep-pressure seekers, but DS and I are also quite intolerant of scratchy clothing and having our sense of gravity messed with (roller coasters being an extreme example)

I think I sort of know what she's feeling and why she's doing that, but I don't know how to describe it or what to do about it.

Most useless post ever, sorry.

It feels like there's frosted glass between me and the rest of the world. Sometimes it's hard to figure out what's going on at the other side. Other times, the glass is clear. It's just like this weird separating force.

As far as the sensory seeking goes, re-read my first post. The social problems? It may be that she just does not want to play with other kids. They may annoy her at the moment. My daughter wants to minimally socialize, she gets overwhelmed by too many kids at once which may also be your daughters problem. Even one kid can be too much stimulus. Basically, at this age, most kids do not get attached to other kids. Auties typically attach themselves to one person, and it is typically a parent. Most times this is the only "relationship" they can handle. I know as an Aspie I can not handle too many friends or "relationships" at once because it is too overwhelming for me. Its difficult for us to be social, it takes a lot of work. Try not to be too hung up on her not having friends because this may be something that is not at all important to her.