Adults on the spectrum: your chance to educate professionals!

But consider....eye contact is a loose term, as I explained above, its not simply about eye contact. The fact someone looks, or appears to look at another person's eyes, as compared to aversion, or looking at the mouth, or elsewhere, the real question is - is this looking gathering all the necessary information about broader facial expressions, head movements etc?

Also, and this needs stressing, are they themselves using their eyes, facial expressions and head movements properly? You'll see a lot of people, even if they have apparent eye contact, giving out random facial expressions.

And with sensory, how is that defined. Mostly it seems to be described in terms of over sensitivity to certain sounds, or as you say, under-sensitivity.

But the critical issue with sensory is crowd avoidance - avoidance of noisy or busy places, which amongst other things, constrains social engagement. A lot of people with autism are uncomfortable in busy spaces - but don't understand why.

Working with students with autism I've encountered those who don't consider they have a sensory problem, but they often show signs of being affected nonetheless.

There's been little research on this if any.

I actually don't personally believe spectrum is the right classification/terminology.

They have misinterpreted the reason for there being differences in presentation.  People with autism (the jury is out whether Asperger's has different causes or physiology to classic autism) have their own individual balance of the traits and strengths of those traits.  In that way it's kind of a spectrum, but not quite.  As you say, the word spectrum indicates that the condition blends away into "normality" in a diffuse way.

I believe that is wrong, I believe you either have it or you don't, just that there is diversity (as with neurotypicals) as to how you are affected and also environment can also to some degree affect which traits are more to the fore.  Someone who came from a neglectful family will have worse traits in some areas than someone from a supportive family who used early interventions.

As for eye contact, I feel you place a lot of emphasis on this, when some people with ASC have no trouble with eye contact.  Some have atypical eye contact where it means they look too long and hard, rather than not enough, and some learn to improve it and you'd never know.  It's not a diagnostic criteria because not all ASC individuals are affected.  Some people with ASC don't have any sensory difficulties either, although I would say the majority do (and some are hyposensitive - they look for noise and sensory input, not hypersensitive).

I blame the "spectrum" for this conundrum. A spectrum is something that can be represented by a line on a graph, where there are variations around the line broadly represented by it, probably a curve or log curve, with amplitude of the condition decreasing steadily until it merges into the general population.

Great idea, but totally inappropriate to autism. To my mind there must be baseline characteristics, and the absence of these would mark a clear break.

To my mind also, the obvious baseline conditions are eye contact as a factor in social interaction and sensory issues as a constraint on social gathering that isolates people with autism. These are common symptoms.

To the autism scientists out there eye contact and sensory issues are just fringe characeristics that are of no real consequence. Its just a matter of "pulling yourself together". So people at the abler end of the spectrum, according to them, are not trying hard enough and and no real symptoms to complain about.

To autism scientists eye contact and sensory issues are trivial.

So let's face it, no-one is going to risk their research career or jeapordise funding by taking any notice of silly little neurotics with an eye contact problem (I mean have you heard such nonsense?!) and a pathetic sensitivity to noise.

But then that's often what research is about - making money. Stick to the main money-earner. Who cares about autism.

longman said:

Fair enough that's where the priority lies.

But why?

What really concerns me here is whether they have a balanced representation of who on they spectrum they ask.

I do get the feeling, a lot of the time, that while they let us mostly abler ones banter away on here, they still only deal in terms of those who are more severely affected.

Fair enough that's where the priority lies. But there needs to be some better understanding of people at the abler end, who do have difficultties too, and have restricted lives.

It worries me that the perception of professionals will remain that people at the "milder" end are just whingers and inadequates, which I think is most people's experience of the professionals.

And I really don't see why NAS cannot be more transparent about this. There's way too much secrecy.

It's a bit confusing isn't it.  It seems they are thanking professionals maybe?  I don't think they are intending to dismiss you, but as those modules are ready, they don't yet need input for follow-up modules.  Maybe they need to see how successful the uptake is of the first ones before doing anything else.  I gave them my details as well.  I find people don't read things properly, I think I am very clear in communications but somehow people seem to ask me things again or be talking at crossed purposes often.  I often think how illogical other people are.

Seemed like a good idea. So I contacted the two addressees. I got a reply saying I had to "let them know" if I wanted them to add my details to the database. I replied asking them to add my details. Must be my asperger logic but I'd asked in my first email.

A week later I got an email saying we do not need any further information at this time. But as they work on new projects they will be in touch when opportunities for involvement arise. Its called in the theatrical trade "don't call us we'll call you"

Fair enough, but I just couldn't get any information out of them about what help was needed. It seems to be top secret.

Which leaves me with that ongoing concern that most of us aren't being listened to at all. 

Who are they thanking in the above open communication?