Do you engage with Autism research?

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Hello!

I'm posting to ask about people's past experiences with research and what current thoughts are about Autism research and perhaps where researchers acquire their information from. Below are some questions, but don't feel like you have to answer all of them! Or any of them for that matter .

Questions on participation

Yea I would give myself to autism research (if it does not harm me on any way and their goal is not to get rid of autism but to get understanding of autism of course!)

What organisations are you most comfortable working with, if any?
Best Buddies, Special Olympics, opportunity village (local Organization in Las Vegas)

What organizations do you feel most accurately represent the Autism community? (i.e giving good advice to parents, professionals or researchers)
Opportunity village and Best Buddies

Which organisations would you say are the least accurate in representing the Autism community?
Autism $peaks

I've emailed back and forth with a few researchers over the last year or so sharing my story with them. Not behavioural researchers, but rather, biologists of various sorts - the kind studying gut flora & their link to autism.

This is because, as I shared here in January of 2014, I figured out that it's gut dysbiosis that causes or exacerbates ASD symptoms and how to effectively treat it via diet, cleanses, supplements & mass amounts of probiotics.

_________________
No for supporting trump. Because doing so is deplorable.

So far, I have participated in 2 experiments involving HFA adults. One was an eye-tracking experiment and another was an EEG experiment (to see how individuals synchronize body movements and brain waves following cooperative tasks).

I enjoyed participating in both experiments and hope to do so again.

BAP stands for broader autism phenotype.

I've answered a few questionnaires from individual researches who have posted here on WP, but nothing else. I don't have any objections to helping with autism research, in fact I feel quite good about the idea, so I'm interested, but not a lot of requests come my way. I'm not a very proactive person.

I get the strong impression that Autism Speaks don't accurately represent the autism community. I don't know of any group that represents us particularly accurately, though that's probably because I haven't looked.

I prefer email or online questionnaires, but I've noticed that I can't properly answer a lot of questions (not particularly those about autism but about traits generally) because they expect black and white answers when the true answer is "yes and no," or otherwise lies between the allowed options. It's probably a big ask, but I'd like it if the questions were designed to better avoid that kind of problem.

I found plenty of examples of black and white questions for which my only accurate answer would be "yes AND no" in the classic AQ test:

http://archive.wired.com/wired/archive/9.12/aqtest.html

Here are some of them, along with the kind of full, honest answers that the format of the test doesn't accept:

Q: I prefer to do things with others rather than on my own.
A: I very often find it easier to do things alone, but there's a special buzz about working together with others.

Q: I prefer to do things the same way over and over again.
A: I find standard protocols often make tasks easier, but I like altering the way I do things, in order to discover improvements to my protocols and just to make life more interesting.

Q: If I try to imagine something, I find it very easy to create a picture in my mind.
A: I don't know. I seem to automatically create some kind of picture, but it's often rather an abstract one. I can create something more concrete, but with nothing like photographic clarity.

Q: I frequently get so strongly absorbed in one thing that I lose sight of other things.
A: I certainly used to, but these days I've become quite good at keeping an eye on other things, so I rarely lose sight of them.

Q: I find social situations easy.
A: Although I often find social situations virtually impossible, there have been times when I seem to have done better than the average person, and while these days I have little faith in my social abilities, what feedback I get seems to suggest that I do a lot better than I imagine.

Forced to choose between "definitely agree," "slightly agree," "slightly disagree," and "definitely disagree," I frequently found myself reluctantly choosing "slightly disagree" or "slightly agree." They seemed equally close to (or distant from) the truth, and "definitely agree" or "definitely disagree" would have usually been quite incorrect. I took the whole test and ended up with a score of only 23, which is hardly an Aspie at all. Yet I'm a diagnosed Aspie! And I honestly believe my formal diagnosis is correct.

I think such tests as the AQ can be very misleading. The AQ has been frequently used as a screening test for ASD, and a low score would normally tell the clinician that further testing for ASD was not indicated. There is a new test that at least attempts to address one of the problems my "grey" answers point to - i.e. that experienced Aspies tend to learn how to compensate for their traits - but the problem of black and white questions remains, in fact it's even worse, because the new test only allows responses of "true" or "false." Even the AQ test allowed the client to leave questions blank, but not this new one.

http://psychcentral.com/quizzes/autism-quiz.htm

I find it hard to understand why this problem is so obvious to me but not obvious to the designers of the questions. Is it because the designer is neurotypical and the client is autistic, or am I unusual? I know of one guy who objected to questions in a similar way, and he was labelled "oppositional-defiant" for his troubles. My feeling is that he was right to object, and that his clear view of the problems inherent in the questions was due to autism. Or are we both missing some nugget of wisdom that would allow us to answer such questionnaires with ease?