There are too many studies appearing now, on the forum, and requests to me in PM, to allow them to continue.

There are many, many thousands of students in the world, and quite a number at some point study autism. The ones who post on forums are eager to talk to people and see their own study as very important.
We also get the same in the chat room at times.

These people may mean well essentially, but there is a great deal of information on the site and on the autism wiki without them needing to post about it.

These are not studies that affect medical or government ideas, it is students doing their homework, writing essays etc.

They often also want to quote what people have said in the private forums, and can say patronising things like "I want to write as essay to give a voice to you autistics" We already have a voice, they need our help, and they want to get good marks.

These same people disappear quickly when their studies are finished and there is nothing to show that they intend to help our cause any, or give even one dollar as a donation.

As decided at the meeting the new policy is to only tolerate researchers who ask prior permission and who we can verify credentials and identity of.

Hi Amy,

I also am guilty as charged.  I'm the one who posted the "I need your help for research with neurotypicals" thread, and have used the comments to put together a survey that I'm planning on posting on-line in a couple of weeks.

I've been developing feelings of trepidation with using AFF, and I've started feeling like I'm tresspassing. Not because I've become a member of the forum, but because I'm afraid that if too many people start doing what I've done people with AS will be losing a refuge where they can go without being harangued by the concerns, needs and wants of neurotypicals like myself.  Even though our intentions are good (and I appreciate your saying that), I'm planning on 1- posting a rough draft of the survey on the thread that I've started, 2- taking the feedback into consideration before I post the survey, 3- posting a summary of the results once they're tabulated, and 4- NEVER POSTING FOR ASSISTANCE AGAIN.

I disagree with your comment that "These are not studies that affect medical or government ideas, it is students doing their homework, writing essays etc. "  People with interests in "disabilities studies" (note: this is quite different from studies on disabilities; disabilities studies focuses on respect for neurodiversity, and is modelled after women's studies) can use forums such as this to help bring your message of neurodiversity into the mainstream scientific press, with the hope of eventually impacting mainstream attitudes.

I'm left facing a balancing act between trying to be a good (and socially responsible) scientist, but at the same time leaving AFF remain a haven.  As such, my decision has led me to stop using AFF as a venue for research, but let it continue to be one that will keep on informing me.  As for my research, I'll be looking at another forum that focuses on AS and Psychology, making sure to clear any ideas with the site's administrator(s).

My final point(s) would be that people with AS try to keep an open mind about the use of the forum for research, particularly that which is trying to present an emic (i.e., autistocentric) approach. Some of us are on your side.  As for the scientists, we are intruding...not as unwelcomed guests...but guests nonetheless, and guests should not impose.  Keep that in mind before you do what I did. I know I will.

(Dr) Jeff

ooops

The link for the Psych-AS forum is:

http://asdgestalt.com

It's great!

Jeff

When Amy said these studies do not affect government views on autism she was referring to the vast majority who are simply students completing assignments.

Thanks for the Link, Jeff... I have book marked the site and will take a look at it... as an Autistic who might be willing to help and participate.

Noctivagus,

The majority of the thanks is due to Solopsist.  She's the one who directed me to the site.

Jeff

Hi Dr Jeff.

The site looks very interesting. :wink:

Mmmm....I will play the devil's advocate here. I know this is not going to help much.
Autistics are marginalised and misunderstood. THis forum is brillliant because it lets a society which has common traits, interests and ideologies get together is an environment that is co-operative, supportive and by and large in agreement.
At the same time the wealth of potential access to information pertinent to autistic studies to help with the reduction of the levels of misunderstanding and marginalisation of autistic people for the NT community is enormous.
So close ranks and no allow the researchers this insightful access and keep this site primarily and foremostly for the people with this condition? Or do we say "Come all, come one we have more autistic comments than you can poke a stick at. Sate your curiosity?"
In one respect either decision is good and bad. I believe research like Dr Jeff's is in the benefit of autistics, but agree many "students" may be just "rattling the cages" to see how autistic people react. On the other hand I think if we "close ranks" we lose a valuable resource for the wider community.
Maybe we should charge an admittance fee to the zoo (You can have our opinions at a cost) and prositute our valuable insights to the highest bidder. LOL (OK poor joke)
Seriously I think both views are logically sound and need to be carefully considered and a well thought compromise should be to accomadate both.

Thanks Gareth. I did read that. I think its a good idea. The problem of course is we have no way of qualifying or quantifying intent. A student without credentials may be more beneficial to us in certain cases than a well qualified profession who extends courtesies but then uses the information in a way which is negative.

Don't get me wrong though I do think that check credentials and getting people to ask for permission is a good, logical and smart move.

I also think that my comments were sound irrespective of the fact that you had previous written the comment you reposted as a retort to my comment.

It is also very obvious to me that bringing up this thread is a good move for the forum and shows that you and Amy are taking care of not only the forum but the people in it (protecting them from the larger element that might want to use this forum to their own end in a way that in no way aids the people the forum was set up for. In this respect is think you both ought to deserve a thanks.

Well, I am one of the guilty ones here... Last year I did a study about self-advocacy and autism, it wasn't for my grades but because I really BELIEVE in this cause. To the point that now I am attempting to start a PhD in January, with the only aim to introduce a new sensitivity and knowledge about autism in my local college, which lacks of it.
The reason why I "disappeared" from this forum (and from all the others I am a member of) is due to personal circumstances and family problems. I kept reading as much I as could and I NEVER abandoned the cause of advocacy and ASD for a minute (in fact, that was the reason why I had so little time left). I was fighting a personal battle together with my son, for his right to go to school in his own terms, and we are winning it.
I am proud of what I am doing, and I do not regret it.
I will keep researching autism as long as I have strength, and I and my great Aspie son is already giving me a hand with it.
As I am here, I want to thank AFF again for your great help, and whoever wants a copy of my (rather boring) research, can write me privately at buckleym (at) iol.ie.

Martina

Ya can still study me Martina lol

Just have to do it over msn as usual

Ian

I know that this is my first post so my legitamacy can be questioned, but as a DXed Aspie who will be an graduate in anthropology in roughly 46200 minutes, i have found that the emergence of online autistim spectrum communities is vastly overlooked in most published literature.  i spent three years learning about how technology influnences cultural issues of gender, class, race, sexuality, ethnicity, nationality, but neuro-psychological differences have never really been addressed, and these are the issues that personally affect me, and I feel that we should be represented as well.  I understand the nature of your post, alot of intro psych NTs pestering me about my perspective would really piss me off.  but I dont that it applies to my situation, I am not pandering for a grade, and my research is not for a class, I hope to have what i am working on published in an Anthropological Journal, because I feel that the anthropological community have ignored the Autism/AS community. and dont tell me to stop because I have been obsessing on this for a while....

While it may be a need to expose ourselves to the world, majority of us are not willing to stand in the spotlight. Majority of us are not ready for it.