Could AS/autism research be more urgent and more effective?

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There seems to be a feeling in the Asperger community that many of the academics working on Asperger/autism are not showing much pace, hunger, ambition, sense of urgency to help people in real pain. In truth for an academic are his/her real interests not best served by finding practical solutions, as to do so would end his/her nice comfy research life?

e.g. "is this just his way of [them] earning a living with us as subjects, or are we going to actually get something out of this at some point? http://www.wrongplanet.net/postp2117567.html#2117567

Is this feeling widely shared? Does anyone have any evidence, experience or views?

Is anyone aware of any funders which are leading, in terms of driving the effectiveness of research, by imposing milestones timetables, paying by results etc?
(as is happening in much of the rest of the charity, non-profit world e.g. Christian mission - e.g. http://www.theseedcompany.org/about Seed Company projects are clearly defined in terms of time, cost and results. )

It depends what sort of 'help' you're talking about
I don't support people looking for a cure to autism or aspergers. The best 'cure' is knowledge and practise, I myself have learned how to act like an NT through conditioning from an early age. However, I still am not an NT, and although my level of autism has decreased over the years (if there is such a thing) I still act differently to NT people and its still distingishable. In fact, I wish they hadn't tried to teach me to be more 'normal' as they put it, as now I feel even more like an alien each time.
Curing autism is not the answer. People have to accept that although those with autism will need help to deal with everyday situations more than an NT, they cannot have their personality changed. I'm living proof of that.

I don't think I agree with this. First of all, it depends on what kinds of 'results' you are looking for.

Either, you want more down to earth research on what will help autistic people on a day to day level, which leaves aside the 'big picture' of what autism is caused by. This could be expected to be conducted reasonably quickly, and should be done alongside the more ambitious research.

If you want more information on what actually causes autism, I don't think a timescale can ever be placed on that because its so complicated - and of course there is the possibility we will never find the answer. Rushing this would mean a risk of coming to a wrong answer. In fact, we'll probably get the best and most interesting information out of this if scientists are able to work without to much pressure to come to forced conclusions.

I've taken it that the 'result' you're looking for is not a cure... ?

Don't hold your breath. What we have is not contagious, nor is it a danger to public hygiene and safety. We shall be ignored.

ruveyn

I would like lots of research on what can help us succeed in the real world so we aren't so dependent on family or welfare. When we do succeed, which variables help? How much does it depend on internal factors (personality, intelligence, degree of impairment)? And how much is environment? It would be nice for society to have hard data on how to optimize the environment so we can be included.

I read a blog recently that discussed a paper on outcome in Utah. (Should I find the link?) The outcome was better there than it usually is, and one factor is probably that, with Mormon culture, there is more social support built into the community than there is in mainstream fend-for-yourself culture. (There are other possibilities, too, including sampling bias.)

Part of the problem, as I see it, is that lab research is higher status than field work, so scientists are drawn to lab work, even though lab work may not be the best use of taxpayers' money. Another is that they don't feel the urgency some of us do to improve our circumstances, so that affects their priorities. In my highly biased opinion.

As far as not researching outcome in order to keep their jobs, I don't think it's an issue, because there's always something else to research. Researchers are very good at finding work for themselves to do.

Here's the link:
http://leftbrainrightbrain.co.uk/?p=1982

Unfortunately research is driven by money as much as we'd like to think it is from concern from our fellow men and women. The 'issue of the year', whatever it happens to be, as it changes, gets most of the money. That's the way things work. Also keep in mind that once something is improved or cured then there is no more money going to be pouring into the research coffers which is one reason it seems to take eons to find a cure for relatively simple diseases and social situations like housing and food production.

I think it would help if they researched older people who can tell what happened and how they are feeling and what they are thinking.

Most of the research seems to be with profoundly autistic children who cannot say if they are aloof or just appear to be, for example. They cannot say why they are rocking. They cannot say that the look of pain they have on their faces is NOT consistent with what htey are feeling inside. They cannot communicate any of it.

Those os us who are older have the ability to say they are going in the wrong direction.

But we are not as cute and don't give them the same feeling. People are very much affected by a silent "Imprissoned" autisc child. I have heard terapists RAVE about them , how much they love them. And then adult AUT is like, "Oh.........well, we have support services."

Yes, I think that would be a good idea. I read an article posted here on WP about a follow up on the original children that Hans Asperger studied- (now adults, obviously). Apparently, they did not bother to interview some members of the original group because they decided they no longer fit the criterion for Asperger´s Syndrome. But wouldn´t it have been interesting to include them too? What kind of coping strategies did they have, how did they manage? I would have been curious to hear about those people, personally.

I wish there would be more research on Asperger´s Syndrome and women. I´m tired of reading about the 4-1 ratio; (which is often a 10-1 ratio). I don´t buy it. I think much more needs to be known about women- and how the traits may differ- so women can be diagnosed and helped. I wish there was just 1 book out there that would give me a clue about relationships, from a female perspective.

I suspect, also, that there are other forms of autism and light autism, which haven´t been studied much- (PDD-NOS). This is basically just a blanket term- rather non-specific- that describes any kind of autism that doesn´t quite fit into a known category yet. Although it´s "atypical" autism or AS, it seems to me like a huge number of children are being diagnosed with PDD-NOS these days. So maybe it´s not so "atypical" after all; maybe autism just encompasses a much broader range than what was originally expected.

Yes, I think it is easier for girls to be Mis dx'ed.

I had so many dxes it is an embarassment to the psych administration.

Girls, if they can't eat, are given eating disorder dx's. Girls who may rock or cry can be given histrionic or personality disorder dx's.

THere is a bias. I took some psych classes and one was on diagnosing. They talked of hte biases- gender biase, race biases, cultural biases.

It's all based in philosophy, no hard science there. So a stupid Dr will be a stupid dxer.

Too true. Except where I am they don't have support services for autistic adults, just general support services delivered by people who know nothing about us.



The Rules? Mars and Venus on a Date? Mira Kirshenbaum's books? Those have all helped me for romantic relationships, and some of it has carried over to non-romantic relationships.

I wish there was more information on friendship, though. I used to read the "friends and family" advice column in Mademoiselle magazine, and loved it, but then the magazine closed down.

Here's link to post Outlier made in "Existence or Inexistence of Asperger Syndrome" topic. It shows recent scientific support for neuordiversity and heightened sense perception in autistics. "Local Processing Bias" applies to the different function. It is a detail focused processing style.

www.wrongplanet.net/postp2116251.html#2116251

The problem with research is that oftein a long time delay will exist between the discovery of something and when it can be put into use. Part of the problem is that the general public have been missold a story that "scientific washing powder", scientific pills etc will make their lives better as if my magic. While science has to potential to make the world a better place, it is not a new form of magic. What "Science" allows us to be able to make informed choices which in the past we have not been able to make.

I do not think that doing real good research is an easy life. I have been involved in research for years, and it is oftein hard work if you do honest good research.

I am however in favour of stopping the gravy train for some self serving half baked people who like to pose as autism researchers, these are the people who use the tools and trappings of "science" to prove what ever ideas that they wish to use to make a fast buck or prop up their hate.

If these people want to have a go at some real science I suggest that they should contact me and I could suggest some better topics for them to consider.