The lack of NTs' feedback mystique

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I don't know about you guys but I have a painful, almost total lack of feedback from well-meaning NTs about all the issues we talk about here on WP. Why they sometimes like us at the beginning and reject us later on. What the points of no return are in their appreciation of us and lack thereof. And so on. It's like a perpetual mystique...they know why and we don't. They know better about us than we know about ourselves. They're also the ones to diagnose us. Has anyone here been diagnosed with an ASD by a professional with an ASD? We're the ones responsible for explaining to the NT diagnosers what it's like to have an ASD and convince them that we have an ASD - something that, except for their books, they have no idea about and never will have. There's this barrier between them and us, that both sides accept as the way things should be. I can't raise awareness in NTs by putting out a slogan, as CanyonWind brilliantly said "Invite someone you can't stand being around to lunch". Expecting NTs to show enlightenment about ASDs by putting up with what's unpleasant to them is unfair. What I would do to raise awareness, however, is promote the importance of dialogue. Not dialogue just so that Aspies have a microphone to say all that we can't cope with and how NTs must adjust to us sensory and socially wise. But a two-way dialogue, where we get plenty of feedback on how WE can bridge the gap more effectively too, other than by trying to guess for decades what bothers them the most about us. Raising awareness in the sense that perpetuating the mystery is NOT acceptable, that it's not OK to reject us without giving us at least a glimpse of why first.

I may be the only Autistic with a grudge against NTs for not telling us what we might try to do to be less annoying, but I don't care if I'm the only one. That's no reason why my claim should be wrong. I don't hold it against NTs that they don't find me pleasant enough. What I hold a grudge against is the fact that they perpetuate this "acceptable" crap that it's better to reject us coldly and without telling us what we might try to do to bridge the gap a bit and be more pleasant to them.

What I'd like society to be moving towards is not the fact that they put up with us because we've campaigned enough that it's now politically incorrect to reject us openly. That's breeding more phoniness. What I'd like to see more of, and more and more, is Autistics NOT TOLERATING WITH A SMILE when we're rejected with a white lie or no reason at all. And I'm not talking only about friends. I'm mainly talking about bosses, and family. What I want to see is a society where not telling us what bothers them about us the most is UNACCEPTABLE AND GOOD GROUNDS FOR REPROACH FROM US AND FROM ENLIGHTENED NTs.

Sadly they (the kind smart NT's anyway) are actuallywaiting for us to grow up. They know there is nothing "exact" that they can say or do to help.

The only thing they can do is prod and push and provide a conducive environment for learning.(like a school) The problem with humans is that sometimes parts of ourselves become locked in (stubborn)... and learning halts.

eg. The body language thing.... it cannot be taught , (I guess there are books on it, but body language is individual and not broad spectrum).... the only way to teach the body language thing to a stubborn lingustic Autie is too exagerate all body languagearound them... but - by the time it's learnt it's to late for it to be a reflex skill, the Autistic person may understand the body language but they have to make a concerted effort to use it... with time it may become a reflex skill.

It's all about what you WANT to learn... sadly Autistics are self interested... even the yelow pages remmebering suavants that drool and can cloth themselves are "stuck in there own stubborness"

Autistics are not stubborn, they just do not perceive these things the same way others do.

when I use the word stubborn... lightly, I mean we are all stubborn.

eg. If your right handed - why don't you try to brush ur teeth wth ur left... you are actually stubborn/apathetic to the possibility of using an alternative avenue., And if I told you to use your left hand you would stubbornly dismiss the possibilty to learn the new avenue., even if you did it once to either try out of curiosity or to get me out of the bathroom, your apathy will land you back on the right hand even if it's in a cast.

Seeing as their are hardly any ambidextrous people, we are all actually suffering from Autism.

Quite right, I've been called stubborn a few times but I'm not.

LOL

The reason we don't get solid feedback on many of the issues we have problems with is because they are instinctual to others. When i move my legs to walk, i do not need to think about the complex movements because they are mostly instinctual and innate. When people are "learning to walk", they aren't truly learning. They are exercising their muscles and gaining enough muscle mass to support their body weight to walk.

I agree with you 100% however that two-way dialogue is needed, over the years i've come to the thinking that if people are unwilling to *attempt* to explain why i shouldn't do something, then i am unwilling to stop doing it.

walking is actually a really good example about not being able to teach the baby...

babies usually teach themselves to crawl or bum scoot along first... but a sign that a baby is more interested in something other than movement inspace is an Autistic baby, one that has no will to move.

How do you teach it to stop concentrating on it's own heart beat or the sway of curtains in the wind?

You could tempt it with a positive reward if there is the slightest effort to recogise external influences, but first you have to get it to recognise the externality of the world.

Or you could negate its current environment... put it in a darkroom, and introduce other environmental influences (eg. sound) ... let it develop other abilities stronger.


Autism at a young age is the most carefull thing a parent to watch out for.... and no matter how bad it seems - NEVER, ever experiment with drugs... I have seen the results.

I would also like to suggest that if you have mannerisms and body language that someone perceives as a bit "off," it's generally either really hard to qualify, or it may come off sounding extremely irrational and small of them for saying it to you... even if you are specifically asking them for feedback. For instance, any of these things may be thought, but saying them to someone is considered to simply be rude:

"I don't like your voice"
"I don't like the way you hold your hands"
"You walk funny"
"You take too long to talk"

etc.

Not really. They have some embodied knowledge and a lot of reflexes, but this is not the same as explicit knowledge or even basic comprehension of what is going on.

I would often receive such comments anyway. People care less about being rude if they see someone as lesser in some way.

No, they don't. This i have been complaining about for a while: NTs think that what's wrong with autistics is that they don't speak much. that seems to be the only thing they notice. they have no idea what sensory issues feel like, movie-like imagination, wanting to be alone, and so on. There's very little useful things they could tell you and those have already been written a lot.



This i believe is at the core of why no progress has been made in understanding autism, the researchers don't have it and those who do are more mathematically inclined, they don't feel attracted to a career in psychology. Maybe they would be more attracted if it was called "psychological engineering"... i'll work on that...



but you can't bridge the gap. what do you expect? what would you do if they told you that your conversation is too boring? you can't fix that. you can act a few behaviors but autism always comes accross, no matter how well you act.

Seriously, this "mystery" that you perceive would disappear if you spent a few years researching general psychology. humans are machines, there is clockwork inside their brains, you don't have to wonder for decades, understanding autism is no different to understanding spoiled kids and alpha males, it's all a bunch of instincts, needs, traumas...

I also would like to add that most "normal" people feel this way, most people would like to have all their acquaintances tell them what they are doing right/wrong.



If people did this you would get a lot of emotional crap that wouldn't help you improve. People don't analyze deep enough, they just know they hate you. This is the same case as with rejections/breakups, if you tell the other person what you don't like about them, you are just hurting their self esteem, it won't help them cause they can't change who they are.

Telling people what is wrong with them is only beneficial in a future world where people can change their personalities at will.

The fact that it's unconscious and therefore can't be explained or put a finger to is often an excuse (so-called "white lie" or a refusal to do the little work required to make it conscious. Proof is WE don't hear about it, but a few weeks or years later we find out from a common acquaintance why the person didn't like us. The person knew it very well, after giving it a little thought while talking to a friend.

As someone mentioned in these forums a few days ago, in the past nobody thought of making the "ridiculous" effort to build ramps for handicapped access to study centers, to health care, to shopping, to cinemas, to restaurants, to buildings, etc. It was unthinkable to plan platforms for new buildings. And special parking spaces. It was not natural. It was unprecedented. It was impractical. IMPOSSIBLE! The most basic accomodation Autistics (who live in mainstream society) need is to be told what they're doing that could be changed. Not all Autistics are annoying/unpleasant in the same ways, and finding out through trial and error can take us (and does take us) decades, till it's too late.

We made it socially-inappropriate (apart from illegal) to refuse to build ramps. It has to be made socially-inappropriate not to tell an Autistic living in mainstream society what they could do to be more accepted/pleasant.

This will happen one day. But we can accelerate the process.

good example

I am NT. I come here (mainly to the parents' section) in the hopes of understanding more about my daughter who has autism. I learn a lot from lurking and now and then posting in the adult section because I now realize that I can't use my own experiences as any sort of model to help me predict what problems she might face as she grows up. I know the old saying "when you've met one person with autism...you've met one person with autism" and I realize you are not a monolithic group. But sometimes I still see themes that are in nascent form in my daughter and in an adult form here.

The main theme I see is bafflement with NT unspoken social protocol coupled with annoyance that this protocol even exists. My daughter is too young to have gotten to the annoyance stage yet. She is still in the pure bafflement stage. So I (along with my husband) have undertaken trying to spell out the protocol as explicitly as we can to help her get by in social situations a little better. It's something my own parents never had to do- something MOST parents never have to do- because it is instinctual for NTs and is not taught to children anymore than walking is taught (per another poster's good example). What really happens is just like "learning" to walk. In both cases, the parents don't teach the skill. They just hold the kid's hand and provide a safe practice space while the kid's own body and mind activate the innate capability that was born there but not yet used.

It wasn't until we undertook teaching social protocol to our daughter that I even realized a lot of these rules exist. I had never really thought about the rules before just as I never thought "ok- left foot, right foot, repeat" when walking. Most NTs follow these rules without conscious awareness of them just as we all walk around without a conscious tape loop in our heads saying "left foot, right foot, repeat". It took me considerable effort and many false starts to bring the rules up to conscious awareness so I could put them into words and teach my daughter. The only people who actually have made that kind of effort are parents of children with autism/aspergers and the sort of professionals who are involved in teaching autistic children rather than diagnosing them. (Which is to say, the doc who handed you the asperger's diagnosis is unlikely to be able to articulate those rules either, but a speech teacher who works with kids probably could.)

So there are two reasons why this mystique remains. First of all, few NTs are themselves consciously aware of how the protocol operates. It's just there but nobody spells it out because, like walking, it's instinctual. If you break the protocol, an NT won't be able to articulate what just went wrong in the social interaction (unless they are the rare few who note these things for a living, like somebody who writes social stories books for autie kids). They'll only know that SOMETHING went wrong without really knowing what it was. Or not getting any more specific than "that guy didn't answer me when I asked him if he watched last night's game" (or whatever it was) "he must be a jerk". Unfortunately, "he must be a jerk" is the conscious conclusion that many NTs come to when an unspoken and even unsconscious social protocol has been violated. A best case scenario is that you realize the NT person has become annoyed and you realize this quickly enough to be able to say "you seem upset with me, what is it?" and the NT person can say "you ignored me when I asked if you saw last night's game". Then you have an explicit rule to mentally jot down: "Always acknowledge somebody's question even if they are talking about something you find boring and irrelevent". Please understand that I just made that example up out of thin air. I have no idea if it is the sort of miscommunication that is likely to happen. The general idea I am trying to get across is that you are likely breaking social rules that NTs follow without consciously knowing about but you are unlikely to have that spelled out for you unless it's a best-case scenario. And even if it's spelled out, there could still be bad feelings on both sides because the act of spelling it out is in itself something of a breech of protocol.

Second reason, few NTs actually KNOW you are anything other than NT unless you have explicitly told them. Therefore, they are operating under the (unconscious) assumption that you share the same social protocol knowledge as they do but have chosen not to use it. Only a jerk would openlu flout social protocol. So, since they don't know you are Aspie, they default to "jerk who flouts the social protocol that we all share but he's chosen not to use" (although not in those words and not conscious, except the "jerk" part.) Hurt feelings on both sides. The only way to get around that is flat out say that being Aspie means the social rules aren't obvious to you and should be spelled out. This will get some people to cut you some slack. But I know it's annoying having to be some sort of educational ambassador. On the plus side, there are many memoirs of auties and aspies (are these two separate groups?) like "Look Me In The Eye" or Temple Grandin's work and an increasing number of people will have read them. Hopefully they will trump "Rainman" as the public face of the spectrum. But movies are more powerfull than books, unfortunately.

Lastly, if it's any consolation, some NTs have dipped their toes in these awkward waters and so have an inkling what it's like (but only an inkling). It's those NTs (myself included) who have traveled to foreign countries which have very different social protocols than the ones we jave internalized and so we find ourselves stumbling and offending nearly constantly. But since we do have an inborn module for learning social protocol, that wears off eventually. Plus, lots of guidebooks spell out at least a few of the rules- the NT foreign traveler equivalent of Social Stories books. But those first couple weeks of near-constant offending of the locals are an inkling of what it's like to not know the rules that everybody else knows.

Hope this helps.

Thanks for this thoughtful post. It points out to me that the people I interact with are forming opinions of me based on their assumptions and knowledge.