Published on 12, July, 2020
Forums such as this are very good at picking up on collective experience. However it seems very difficult to turn this into scientific knowledge about autism. Is there any way of improving the connection?
Science moves slowly, by means of measured or observed data from sample populations published in academic journals. Established undderstanding depends on how many poublished papers in the right journals with the right specialist grouping generate sufficient debate, and lots of new ideas take years to turn into practical science.
Take two issues: eye contact as manifest by gaze aversion and blanking or loss of awareness.
It appears to me to be a common experience that many adults feign eye contact out of necessity., They look at mouths or noses and learn to read between the lines and nod on the right cues most of the time. However, as especially manifest in income support re-assessments and dla assessments, the medical profession still view conspicuous gaze aversion as a diagnostic principle and do not seem to recognise the existence of "faking" eye contact. It still doesn't mean that people have eye contact just because they've adapted to making it less obvious.
I've come across quite a few people on the spectrum who experience blanks - bit more marked than "mind wandering" in the general population. People actual experience switching off, in social situations or while walking about in the street. But this doesn't seem to be recognised by scientists studying autism, or by the medical profession. Maybe it just doesn't manifest in MRI scans, or it just isn't seen as a research priority. It ios a very real and worrying concern for those who experience it, it just isn't registering with the scientists.
People on the spectrum need the right help now. They cannot wait for the right number of articles to be published. How do we improve communication between the collective on-line discussion experience and scientific recognition of phenomena?
Yeah, it bothers me that switching off, freezing, or shutdowns aren't covered in the clinical literature, not even mentioned in Tony Attwoods book. Although I score quite high on the AQ Test, and was diagnosed autistic as a kid, and i experience loads of the traits, and some have a terrible impact on my life, i doubt i,d pass a clinical test now.
I worked as an academic, but i was interested in practice and how research informed practice, and vice versa. Sadly I didn't fit in and trying to do that didn't fit the promotions criteria. I left, I'm much happier. But I'd say your question applies to most fields. But things do move forward in the scientific world, and that's bringing them into contact with us. So we have to engage, go to conferences, read and comment on what they write, organise symposiums that bring us into contact with them on topics of our concern. You need to look at it from their perspective, they're after kudos, promotion, winning grant money, intellectual puzzles, not necessarily the truth or what's most impactful.
I wish I had a better answer. It's a question that puzzles me in my day job relating to how to get academics to relate practically to job. It'll only change though by people like you, us, making stuff happen.
I don't think science is the "prime mover" in public understanding here.
How well acquainted is the average person with the nitty gritty of scientific research in any area of life?
I'd say "not well at all".
Raising awareness is the key.
In terms of people being undiagnosed, that has everything to do with an overloaded NHS at the moment.
So I'm outvoted at least two to one by the "there's no point in trying to do anything?" school of thought? Got it in one?
It had been my impression that, while eye and gaze issues are important to diagnosis, nothing should be done to make practitioners aware that people on the spectrum may try to conceal or compensate the problem, and consequently fail to meet diagnostic criteria?
It has been my impression that blanking out periods of time was an issue that isn't looked at much.
But the majority verdict is "what's the point in trying?"
And here we are trying to get MPs to back campaigns to improve our lot. Doesn't help if the impression created in this discussion forum is negative and defeatist.
Got it in 1 dude.
Tell us about it, while we have been breathing they are still just passing the name part of the game and as for accumulated knowledge ? we would have to be recognised for that.
Science is out of date always and whilst it has engaged a few of the privileged, educated and user economic spectrum population and it has labeled the mystical elements of some aspects of life which has saved a few burnings at steaks and duckings in ponds as sumary justice it can do little to help the fearful, ignorant and heedless. Who will still wish to vilifie the Gay, Autistic, Female and many others besides just because they can and have the power to do so.
The slavery that is permitted employer attitudes on our mainland in the name of internationl diplomacy and the sex trade along with and the base employer atitudes in this country who view wages as an expenditure to minimise at all times, employees who are viewed as diposable and attitudes of misstrust and advasary rather than investment, encouragement and trust.
Long live the mediocrity of economic science and its bed felllows, Nahhhhhhhhhhhhhh, NOT.
WB
Value in our fellow man is all we have of value, loose this and you are lost indeed, in a country whoes historical inheritance is overthrow and subjugation we vilifie our children, enforce the wills of oour masters with the violence they would offer only to save our selves from the anger and indifference that they would add. this is our inheritance and we are betrayed by our own leaders in the persuit of riches we do not love or cherish but adopt for we have not seen the choices we could make to be free and the price our masters set is very high.