How you see me.

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Thank you Daniel for sharing. It so fascinating to see the living/moving human being behind your posts. (I often wonder what many of you on the WrongPlanet are like---that is to see in a video like Daniel did). I have posted several times on threads that you were on. So I have heard of you almost since I joined WP this last November. And if I saw you in real life as you are in your video, I would simply say, "Hi Daniel, I'm Tim---glider18." Is your video how I expected you to be?---No it is not. Does your video alter my opinion of you?---No it does not. Do I find you a fascinating person?---Yes I do. In fact, I find autism fascinating. Since my diagnosis of AS I have done a lot of research.

Now something interesting. I play music. A few weeks ago I made a video of me playing the organ. When I played it back, it was like I was watching a stranger. That just didn't seem like me. Anyone else here relate to that? I mean anytime I see myself on video it's like, "Hmm, I didn't know that's how I acted." Growing up I soon learned I was different, but yet I still felt I fit in. But then when I meet up with people I went to school with years ago, they all agree I was quite eccentric.

In viewing old home movies of me when I was a child it's like, "Wow!! !...there are the autistic signs!" I thought my finger flapping was more recent, but there I am doing it when I was only a few years old. I showed some of these movies to my therapist and he noted things like my ritualistic behavior as a child.

Well...anyway...if we got brave here like Daniel, it would be neat to let others here see what we are like. Anyone up for that? I will do it . I think I can...I think I can.

Philothea,

If it's not a planned meeting, i.e., you aren't a professional or something, for me, the best would be to just leave me be, as I wouldn't be interested in conversing with you (too hard and too much pain involved in person). I can't speak for someone else who totally sucks at social interaction like me (the aloof kind), but I can say that if they're interested in interacting with you, they'll probably initiate it in a very strange way, like perhaps putting their forehead against you or staring at you intently. There's nothing to be alarmed at this. For me, just being around you would be interaction; feeling your presence in mine would be all I need to feel a connection.

Age1600,

Yeah, staring at lights is sensory seeking; if you ever see someone with autism looking up, it's not always that they're trying to avoid eye contact, they may just be looking at something they find really nifty on the ceiling or in the sky.

glider18,

Eh, I have no ego or pride, and I'm not shy in the least; it's nothing for me to post a video of myself--I don't feel embarrassment. I've posted several of me talking, but they aren't how people see me (I deleted them), that's how my bedroom sees me.

And for the record, I have one variant of how HFA manifests; the aloof/Rain Man kind, where the rest are of the passive or active but odd type, which is your typical Asperger's Disorder for the most part. All three can be just as severe as the other depending on too many variables to list.

yea i do that allllll the time i also do the eye wandering thing haha, i loove fans, or anything to do wiht royal blue or sparkling, or flouresant lights or just an average light in a circle shape lol idk why circle but oh well haha. but i didnt know it was sensory seeking, i swear i need to come to u more to find out things rather then my dang autism specialist hehehe. i honestly think autistics tell more about whats really going on the any professional if u ask me, because ppl always ask why im giggling staring at the light im like idk why do u care lol. anyways thanks for pointing that out !

I'm always wandering my eyes around looking at patterns. I don't expect anyone else to know what I'm doing because they can't read my mind. I don't see other people looking at ceiling or anywhere else. I have seen them looking down at their papers or straight across the room. That must be the norm then vs what we do.

I wouldn't b able 2 let myself do that in public. I do stim in some ways publicly though.

I don't have a say, unless I tied my arms up and wore a neck brace. O, and leg braces to stop me from swaying. O, and a back brace so I don't sway when I sit down. Hell, just wrap me up like a mummy.

Then I'd be, Daniel, the person who looks even weirder to people than he already does. Or perhaps not.

When I get "bad", I start banging my head against the nearest hard object, whether a wall, shop window, pillar, etcetera. Which usually happens when I go out and it's busy.

It so nice that you felt able to post this video for everyone!! !

I don't have regular autism just aspergers but I was always able to get along better with people who had autism.

when I was in 5th grade I was a helper in a class full of autistic people and they were so fun!I seem to get along so well with them. I felt like I belonged there some how. That was my favorite place in the school.

I miss on person in particular and i wish i could look her up. But sadly i don't remember her name.

Most of them were extroverted and not introverted, so i never saw anyone who wouldn't talk. Some couldn't talk but they still acted hyper.

So I was wondering,

If someone walked up to you and wanted to talk why would you not talk to them.

Are you not able to? Are you to nervous?

I am just curious cause I want to understand. I mean no offense what so ever.

I just want to better understand so if I meet someone like yourself I don't accidentally upset them in anyway.

I try to be understanding of people, and to understand I have to ask.

You don't have to answer if you don't want to.

- too hard; each new person I meet, is like a baby first learning to interact with their parents. Notice how a newborn baby doesn't really do much except stare? I'm worst than that in regards to social interaction, as I won't even stare
- my head loses all its learnt words when it bumps into someone it doesn't know, and even if it's someone it knows and it's an unexpected meeting, it'll still lose them
- too overwhelmed by the situation, which is tied in with the second point above
- I can usually converse with my mother when we first go somewhere, but in short-order I lose my ability to talk to her too

Not nervous or scared, just overwhelmed if I know you or totally socially ret*d if I don't know you.

Talking to me hurts, as receptive speech needs to be processed too.

When I'm home and with my mother, I'm a totally different person; it's like I have AS with her. I'm also somewhat ok in a one on one setting with a professional, for some reason or another (I think it was the speech therapy I had when little, as she was a nice lady, and I fondly remember that it was a nice experience for me).

So, leaving me be would be the best thing, or someone else who appears aloof. As you said, there's nonverbal individuals as children who'll still try and interact with you, and adults too; I'm not nonverbal now (I was, but that doesn't matter; as a nonverbal child I wasn't interested in interacting, however. I, introvert).

An interesting anecdote: I once had an old nonverbal autistic lady come up to me and put her curled up hand on my chest, with me doing the usual staring at the ceiling routine with the same curled up hand (pretty lights!); her carer told my mother that that's what the lady does when she likes someone. It was a weird experience.

I do lots of films of myself, but I seldom ever get to catch the hands curled up pacing around in cirlces on my toes me....but I do do it. Someone would have to be filming without my exactly knowing to get it properly. I am closer to NT than you...but there are lots of time when I am going around with my hands over my head and my fingers in my ears...and i do curl my hands...sometimes under my armpits..

I can show footage of other friends of mine that are on the spectrum...but that is besides the point...

[youtube]http://www.youtube.com/watch?v=DhnIPZ3enYo[/youtube]

ok..this is me interacting with my pal who is arguably on the spectrum..he is not an aspie persay...but he is bi-polar schizotypal..stims constantly..is on SSI...was diagnosed with childhood schizophrenia and so-on...

I agree.

you know, daniel, i did not find the vid "normal" at all. I found it to appear quite profoundly autistic and my bet is most people who are not educated about autism do not understand you and make all sorts of assumptions based on your external presentation WITHOUT bothering to understand the inner and outer dispcrepances people with autism can present with. Trying to gloss over that fact is not accepting the reality of this demarcation line. It exists. it IS autism. I think your vids and your posts highlight the reality of autism in a profoundly important way.

As I have said before, my diagnosis is AS and i am far more able to interact than you seem able to. I do have some fairly strange stimming though, that fits more with a kind of HFA presentation...i hand curl and twist, pace, rock back and forth on alternate legs in queues in ways that seem childlike and repetitive and out of place for a 46 year old mother. I go to therapy and pace around the office there on the Gold Coast. i stress and focus on lights, pattterns and shapes to the extreme. BUT i CAN say hello and i Can do to and fro conversations one on one for periods of time before absolute exhaustion sets in. A day around people usually results in 3 days on the couch and a migraine post contact. But i CAN do it. Talking for me also hurts - not always - but it can, and there is overwhelm and meltdowns just when asked a question or something. This happens A LOT at home. i am hell to live with and i have only rudimentary emotions with little mid range subtleties.


On good days i can appear ok. On days when i feel more locked in and interior and unable to reach out to others, when my stimming is more pronounced - well, i know what some of the mothers at my son's school say about me and my "strange and antisocial ways," and i know i am stared at. I know i am different to them and do not understand them, nor them me, even though i can do some feigning and social scripting these days.

I do not feel you look "normal" by society's standards at all. I wish that was not the case. But the sad reality is that this is what we face in terms of educating the masses about autism.
I wish you were perceived as "normal" ...in all sincerity I mean that...but the stark reality is that most in the world do not even begin to understand autism, let alone comprehend the kind of complexities you must face on a daily basis because of the demaraction line between the inner and outer daniel who moves through the world as himself.

As LabPet said recently to me - autism is great, but it is HARD.
I think you speak honestly and frankly about how it is.

Last edited by millie on 04 Apr 2009, 5:58 am, edited 1 time in total.

millie,

I think I read somewhere from a research paper, and it says what you just said (Daniel looks it up): "This discrepancy between cognitive ability and social adaptive functioning is at the heart of autism and is forcefully reflected in quantitative discrepancies in IQ and the Vineland composite." In other words, no matter how bright you may be, there is this thing called "autism" which disconnects one from society itself, no matter how hard you try to fit in; you'll never fit in like those without it (whatever your ASD label may be).

Like you said before; I'm a different animal than the standard human-make. They can't read me just as I can't read them; the only form of "connection" I've felt in person to someone I don't know was the aforementioned girl with autism (it was at Minds & Hearts); she was looking at me, stroking a piece of pink velvet in her hands, as I was rocking I caught her eye--I saw a reflection of myself like I never have before. I suppose this is what "normal" people feel when they look at another of the same make.

I get by, and I don't care how people see me; people can judge all they want, but it ain't going to be reciprocated by me [if I had a voice].

I see my reality, and there's no point in hiding from it; I don't care about the neurodiversity movement, nor do I care about any pro- or anti-cure arguments. I'm here now, walking amongst people I don't understand, who don't understand me, and I'm just trying to get to my end, wherever that is, like everyone else, whether they know it or not.

Autism is hard? Yeah. I had a lovely moment the other week when my mother told me how much she could do when she wasn't ill (she has MS now); I was amazed at how much and how easy it is for "normal" people to live. But then, the difficulty I have gives me a unique experience on life and living; sure, I haven't known any different, but I play with the cards I've been dealt, as I don't trust luck. Life is hard? Probably, sometimes, maybe, who knows?

The moral of this story is, I don't know, other than that things aren't always what they appear.

Nothing in this video surprises me, because you've described all in your posts already. So it's exactly what I expected.

It's certainly not "normal" but in this context it's not surprising either. It's not as though you've been misrepresenting yourself here as an outgoing person able to socialize freely.

If I randomly came across someone acting like this, it wouldn't bother me. I'd probably feel angry and defensive (even if I might be too afraid to articulate it) if someone said something disparaging.

Anyway, this doesn't change how I see you at all. It's certainly one part of you, but the "you" you display here is also part of you. You are still one of my favorite people here and someone I admire a great deal. You're very intelligent, a great writer, a kind, gentle, helpful person and you're profoundly autistic. All of it is who you are, and I'm very happy to know that person. I certainly don't think any less of you because of what's in this video.

and that, my fellow australian, is a very good summary line. It really says it all. This discrepancy is the key feature of what people on the spectrum deal with to varying degrees and in various ways.
You are a very important contributor to WP, and i have learned, and continue to learn, a great deal from you.

I rock like this for a good portion of the day when I sit down; I don't know why I do it, other than that it's comfortable for me (this is something I just do, no matter how stressed/overwhelmed/happy/indifferent I am); O, and I think I'm chewing on my lip for some reason or another):

[youtube]http://www.youtube.com/watch?v=aELCsKKF61Y[/youtube]

I listen to music a lot; my walkman kept me relatively sane in school, and my MP3 player helps drown out the background noise when I go out and when I turn it up loud enough (earplugs don't seem to work in my case).

I caught myself rocking yesterday, never thought I did it but next thing I knew I was rokcing to the beat of the song I was listening to and doing some weird tapping thing with my fingers.

My friend in the video I posted (and I apologise if this was not the best time or place to post it)....is constantly moving unless he is asleep. He does frequently rock in the traditional way, but mostly, or in addition, his leg moves back and forth in perpetual motion while he is sitting...which means that if he is sitting in the car seat behind you, he will constantly be kicking the back of your seat. He does not seem to be aware of how much he stims...and I am sure he doesn't know what people call it, but it seems to be a very ingrained part of him...I have my stims, but they are not as perpetual as his.