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?
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.
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.