Research on Experiences of Students with Asperger's

Post Reply New Topic

Glad to know that!

Now, if only Alex would confirm Bianca's claim of having approved her original post.


Evidence, Please?

Last edited by Fnord on 09 Jan 2009, 3:34 pm, edited 2 times in total.

Seriously, even in the very top universities, they have to make all students spend a certain amount of time as subjects just to get enough for research. Let alone in something specialised like ASD.

PS: I go to a top university in my country and have spent some time in the psychology department.

I'm glad to know that the IRB has confirmed that this is indeed an actual study. As for questions about recruitment at Princeton, believe it or not, there are VERY few students at Princeton who identify as having Asperger's, so it is not an ideal place for attempting to interview students. Additionally, that specific information is confidential, so I have no means of accessing who those students actually are. Again, this is not my only means of recruitment for my study.

The issue is that with disorders like AS the prevalence rate is very low (1% in the case of AS) so recruitment from a university student pool isn't going to yield enough participants. Furthermore, most students wouldn't be willing to go through such a study even if it did give them all their needed research participation credits. Generally when studying a small population like AS you have to resort to actively recruiting people with a diagnosis (or if it's an especially rare disorder just people with symptoms that indicate they probably have the disorder) which is done by doing things like placing ads in newspapers. And there's always the option of getting your participant pool from an online community. Unfortunately, the big issue with doing that is the representativeness of your sample goes WAY down (since by using the internet you've just selected for people with high enough incomes to pay for internet service, those people who live in areas with internet service, tech savvy people, people whose disorders aren't severe enough to render them incapable of working a job to pay for internet service, among several other characteristics and to say nothing of the ubiquitous self-selection bias). However, it tends to be a necessary evil when you're on a budget.

Furthermore, since Bianca attends Princeton any sample taken from the student body there is going to be even further biased by IQ, level of functioning, and personality type. Generally one would expect to find a lower percentage of aspies at a school like Princeton, and would also expect that any aspies who do attend are more functional than your average aspie. Since her study is looking at transitions during the young life of aspies, this would be a serious validity problem (IQ becomes a confounding variable...while not all Princeton students are geniuses, it's very safe to say that the vast majority boast higher than normal IQs). Even if she was at a less prestigious school this would still be a problem since aspies more severely affected by their disorder wouldn't be included in a college sample.

This is why I'm glad to be a neuroscience major. I don't have to chase down participants, all I have to do is mail order them


Well, one reason is that AS is a relatively new diagnosis and one for which the criteria have really only been established for children. As a result aspies around 30-40 years and older tend to be undiagnosed.

The other reason is that AS is a very popular self-diagnosis among social misfits as it not only gives them an excuse for being socially incompetent but also lets them feel better than "normal" people at the same time since people with AS are stereotyped as being eccentric geniuses. Not that I'm saying everyone on here who has a self-diagnosis doesn't have AS, but rather that there certainly are some who don't have it and just wish/think they do.

I have already spoken to Bianca over the phone, and the only information required is your name, which will NOT be attached to your responses or even stored permanently. It is only required in order to complete oral consent for IRB purposes. And really, if you are *that* paranoid, it would not be difficult to either use someone else's name or make up a name, as there is no way for her to verify your identity and I highly doubt she is attempting background checks anyways. (Not that it would matter, as all the information you could find on me from my name would be my current university, the fact that I was valedictorian of my high school, a few awards and scholarships I got, and a couple honor bands/orchestras that I've played in... nothing too exciting)

There probably are a fair number of Aspies at Princeton, but they may be undiagnosed (I would be undiagnosed had I not actively sought out a diagnosis) or choose not to disclose to the university (I have Aspie friends who have not disclosed that to our university) so simply going around campus would not likely give Bianca many participants.

And they usually pay them.

No they don't. I know at my school, any student who enrolls in an introductory psychology class gets to be an unpaid guinea pig for projects done by advanced psych majors or grad students.

Nope the system is you do the research or leave.

If your university actually does use such a system it's unethical and they could get in really big trouble if the APA or the scientific community at large were to find out. With research participation there always has to be an option for people to decline without any coercion (having to drop out of a class or leave the university would count as coercion). Usually the way universities get around this is giving students the option of also doing some kind of alternative assignment such as having to write summaries of journal articles, or observe research and then write a paper on it. Of course, most students don't want to have to write a paper so the universities still get a very large pool of free test subjects every semester.

Payment is usually only done when recruiting people from the general public, or when a study will seriously inconvenience someone (such as any medical treatment study). Even then other methods of compensation are sometimes used.

Well, Bianca, I'll offer myself to your study. I'm a 20-year-old sophomore in college. I was diagnosed in 1992 with just a plain "Autism" label, because back then I guess they weren't diagnosing AS. PM me and we can set it up.

Good grief people get a grip on yourself! There has been oodles of researchers recruit for studies on here over the years and none have even bothered to contact Alex beforehand. So give Bianca some respect as she has already gone above and beyond the other researchers. And who cares anyway if Alex approves? Is Alex your parent? Are you not adult? Are you not able to make your own decision to participate or not as an ADULT? Do you have to consult Alex to make decisions in life? I sure hope not because that's a lot of pressure to place on one person.

I can't believe the person called Princeton to check up on here. I think we have some severe paranoid schizophrenia going on this board. I've participated in several studies from researchers who have posted here and have had no harm come to me, no media calling me and no stalkers. People we're just autistics; we're not that special. And as far as being paid people don't get paid for studies unless medical experimentation is done or tissue donated. Again I've participated in several AS studies and I also have my own chapter in someone's book that was just published recently (non-AS related) and believe me there's no money to be had in this. If you want money get a job. What do you think she would pay you with? This is a thesis for school. She's not gaining any money from this. Please people! You should be thanking her for even having an interest in us because so few people really ever care to ask what the Adult Aspie thinks, feels or experiences in their life.

That said Bianca called me today and she is a very polite and delightful person. She was extremely respectful of my feelings and concerns as an autistic person and I feel ashamed as a WP member for the way so many people are treating her here. If you're that paranoid folks then don't participate, don't say mean stuff to her on the board and just leave it be. Sometimes the people here are worse bullies than the bullies they claim have harmed them in childhood.

No, we just often find it difficult to trust others because we've had negative experiences with people in the past. By now Bianca has more than demonstrated that her study is legitimate, so I'm hoping those concerns will subside shortly.

Anyways, best of luck in your research, and I hope we haven't given you too much trouble.

Half of these studies are pretty much anonymous quizzes, so I doubt anyone would make a massive ethical objection. Its just to ensure that every student can actually complete a dissertation and do their own research. No one has ever formally objected to this afaik.

And Princeton was called to reassure those who were uncomfortable. I'm not in the parameters for her study, but hope she does well.

You don't have to like everyone's actions, but you might want to not jump to snap conclusions about people, Kangoogle. They may have a whole agenda or slate of reasons for their actions of which you know nothing. In my experience, people tend to react strongly to certain situations because of prior experiences - that had either very good or very bad outcomes - and that's not going to change without replacement experiences of an opposite nature.

Frankly fools are still fools, regardless what excuses they make for it. If they are so paranoid though, you would have thought they would have learnt to hide it - after all people who know can screw them over...

And then there's that part about Aspies lacking social skills...