And I’m not talking about these being the assumptions of the general public … I’m referring to people like me, who’ve worked for years with developmentally disabled people … I’m referring to the parents and siblings of disabled people, and often, disabled people themselves. Our extremely narrow, restricted, dismissive, dehumanizing opinions of the understanding others are able to achieve is conveyed, by us to those with whom we work, in every conceivable manner … a thousand unmistakable ways … every single day.

I am trying to teach this stuff to staff, and it is not easy. I think, people simply don’t believe me … for a lot of different reasons. I try to explain that human brains are designed for social understanding … to understand other human brains … and we do this in all kinds of ways, in which language plays a relatively small part. The brain, we know, has great plasticity … when one part doesn’t perform in the way it was meant to, our brains typically re-wire or restructure themselves to accomplish the same thing in other ways or by using other parts to accomplish the same task. A disability that effects, to one degree or another, an individual’s capacity to comprehend words, or difficulty with receptive language, does not necessarily affect the individual’s capacity to understand accurately the meaning of what’s being communicated.

An obvious example of how we can accurately assess meaning, in spite of words, is to think of being in a theater with 2000 people … sitting as far from the stage as possible … let’s say, in the back row of the balcony section. A performer could take the stage and pick up a microphone and, in a matter of seconds, everyone in that theater would know that the performer is someone suffering from extreme stage fright. The performer could being saying things like, “Good evening … I am so happy to be here tonight. Over the years, I’ve played here several times and I just love performing on this stage … I’ve never felt more comfortable, never felt more at home than I do right now …” etc.etc.

Everyone, absolutely everyone in the theater knows that his words mean nothing … that they express the opposite of what’s really going on. And we would all know this instantly by the SOUND of his voice, by his hesitancy, his gestures and movements, and any number of other, very clear, very obvious cues. So much for the intrinsic value of words. Yet, with disability, in general, and cognitive disabilities in particular, we assume if someone seems only to understand a very few words, they must also only understand a very few things about what’s going on around them … or about the people around them … i.e. “…if they can’t understand to simple directions, how the hell can they understand a subtle shift in the tone of voice?”

I can’t explain why, but I know beyond any doubt that they do. I’ve seen it, many, many times. Absolutely everyone understands sincerity, everyone understands respect, everyone understands honesty, etc. …and everyone understands the opposites, when expressed to them in tone, in the time we give, the manner and nature of our expressions and interactions, and on and on and on.

I tell staff that those we work with have far less need for our kindness and compassion (which is better than our abuse and cruelty, of course) when compared with the desperate need they have for our sincere respect and the strong sense of equality. I’ve seen the effects and impact these have … and I could go on about it forever …

http://www.newyorker.com/online/blogs/culture/2013/02/anne-hathaway-in-defense-of-the-happy-girl.html

Who else here thinks that choosing that picture for that article is a disaster? Because that’s not a happy face, people. It’s really, really not. And the article makes it pretty glaringly obvious that the writer thinks it is. An ecstatic one, in fact. Definitely not despairing/terrified, which is more what I’d take it for.

Not every face with a smile is happy. Aren’t they supposedly meant to be better at realising that than we are?

I can relate to some of what you say about the nonverbal communication as well, but I feel like I could get stuck in endless anecdotes. Mostly I can say that “In My Language” was probably the catalyst for me in understanding that I am autistic, and to some extent it’s because the video itself made sense to me. I appreciate what you say because it is so important and so often neglected or even actively excluded by others.

It’s frustrating to so frequently see other autistic people assign value or agency to other autistic people on the basis of how they communicate, or whether they communicate in “accepted” ways.

Also, as far as nonverbal communication goes, I am terrible at the various tests that test this, but I find I am fairly good at picking up emotions, guessing when someone is hiding something or lying to me, and sometimes determining their actual motives. In some situations in the past I have guessed information about social interactions that the people involved swore vigorously that I could not have known without someone explicitly telling me. I’ve sort of been going over this with my therapist, and I’ve tried to find some way to explain it because it is not the way NTs do things, but there are many situations where it doesn’t help me much, either.

The ‘notify of follow-up comments’ feature appears to suck. And possibly be broken.

There is definitely a commonality of root/cause, yes. I was more referring to the result of what shows on the surface and tends to get studied.

We tend to be different frequently in a lot of the same things, which highlights a similar or same underlying cause, but the *ways* in which we are different vary a lot. As I said, most of the criteria seems to keep coming back to, instead of ‘displays x’ like many conditions, ‘displays any variation of x that NTs don’t’.

Clearly there are commonalities somewhere along the line, or it wouldn’t all be considered the same condition. My point was just that it adds to the difficulty of studying autism because most people seem to think of it as a condition in the way many others are, with one defined set of symptoms and few variations. A lot of people seem to miss the fact that it’s more like a mix-and-match grab-bag of possibilities – at least on the outside, where they’re trying to observe it.

It is worth noting though that many people currently diagnosed on the spectrum with language development delays and developmental regression do not have the same advantages of people with a hyperlexic language delay or speech regression in navigating their world through patterns and coding symbols, including the non-verbal language of others.

http://katiemiaaghogday.blogspot.com/2013/04/autism-and-nautilus.html

Actually I think we do have things in common, but those things we have in common are actually the cause of the extreme diversity among us. In particular, we have differences in how our brains work, that cause us to sort of…. Argh I forget the words for it. We have limited resources, and those resources need to be spread out over different abilities. So each of us develops different patterns of good at certain things, bad at others. Some of us have relatively fixed abilities. Others have abilities that fluctuate by situation. And some of us have like one set of fixed abilities that we default to, but the abilities also vary by situation.

And all of these things are adaptations to having certain limits on how much resources we have for different abilities. That’s the thing we have in common, but that exact commonality is what causes our extreme diversity. At least, that’s the easiest way to put my take on it into words. The real situation is much more complex. This is just simplified fairly easy to describe version. So it’s not that we don’t have things in common, but that our commonalities under the surface cause our diversity on the surface. There’s also diversity because the researchers over the years have been really confused about what we are and therefore over generations of built p confusion there’s a cause of diversity there too. I’ve described it better in other posts like “the fireworks are interesting”.

Autism itself is sort of a monomania for me, and I frequently observe the autists I know in much the way my husband similarly observes the non-autists. I can’t say I’d thought too hard about non-verbal communication to the exclusion of language, though – I don’t happen to know any such autists in person, and anyone I meet online is already filtering for those who can type – given the areas I tend to frequent, even mostly those who type well and naturally.

I had already observed that the ‘bad at body language/no body language’ thing is bull, though. We’re just bad at *their* body language. Interestingly, I’ve learned that aspies tend to actually do much better than NTs when it comes to reading emotion in the absence of other body language – such as in a shot that includes only the eyes. This probably has something to do with the actor test you’ve mentioned, as body language can be masked by acting but the eyes frequently cannot, or not entirely.

It doesn’t suprise me too much to hear there’s such a wide spectrum in non-verbal communication. Even just within those who do communicate with speech/text, even primarily, I’ve noticed that it’s almost like aspies run on a spectrum of different ‘frequencies’. There are those who understand each other perfectly, on the same ‘frequency’ if you will, and at the same time others will be completely unable to surmount the communication barrier even when they are otensibly communicating the same way. Even in an enviroment supposedly devoid of any potential for variation due to the lack of any body language, namely text-only.

I think that’s a big part of the difficulty NTs have with regards to studying autism, or ever truly understanding it. It isn’t just that we’re so different to them and what they know, that they have so much trouble thinking of ways to conduct studies that aren’t automatically biased by being inextricably tied to their own methods of communication, their own ideas of behaviour and development. The problem is also that we’re so different from *each other* so frequently. I’m not sure how many NTs have noticed that yet, but even the most basic diagnostic criteria doesn’t tend to be a case of ‘will display x’. It’s frequently a case of ‘will be at one extreme or the other of x’, at least for binary traits… the more complex the trait, the more it turns into ‘anything but what NTs display’. The only truly unifying characteristic I’ve really noticed that one could point to among autists is that, while NTs tend to be a relatively homogenous and unified group, autists by contrast, as a group, personify variation. Not variation in any one particular direction… just variation, in any direction. Depending on the autists you pick, they can be just as unable to communicate (or get along) with each other as any autist and NT pair. They try to study us as a unified group, but the only thing that truly unifies us is our diversity.

Anyway, that’s all for my ramble. I’m sure I had a point when I first started typing, but I think I lot track of it somewhere.

I think if I had to decide I would say typing is my “first language.” Speech and nonverbal- the kind of nonverbal you talk about here- are close, but ultimately virtually everyone I interact with expects speech so that’s what I end up using the most and getting the most practice with. Sometimes I’m not actually able to use speak, but I’m vary rarely unable to -understand- speech unless it’s for auditory processing reasons. When I’m dealing with overload sometimes I wish I didn’t understand speech because having to sift through and make sense of it can just be too much and I don’t know how to turn it off.

What this means is that the “internet autism community” is extremely friendly to me since people who communicate like me are naturally drawn towards the internet. The internet allowed me to develop abilities and learn to understand things that I never would have otherwise been able to do. Since a lot of the real world “autism community” grew from the internet that means it is relatively friendly too.

Re nonverbal stuff, since I’m not staring at people’s eyeballs all the time I do often notice things that other people don’t and I think I’m also more aware of their tone of voice. I notice people being uncomfortable, sad, etc where other people see someone as being angry, happy, etc because people at least in this culture have been trained to only pay attention to a very narrow range of things. I expect that if I didn’t understand speech or somehow lost the ability to I would become much better at this, much like the blind people who are often able to notice things that the nonblind don’t.