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.