Research on Experiences of Students with Asperger's

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Will we be required to divulge our identity? Not that I don't trust you, but I tend to remain anonymous over the internet as a general rule. I will tell you that I have an official Aspergers diagnosis that has been standing for over 12 years, and that I am 17 and about to turn 18 in a couple of months. I would be happy to participate seeing that this study may better the services available to those that come after. Unfortunately I am quite a way away from Princeton, so any interviews will have to be conducted over the net. If I remember correctly, Wrongplanet.net has their own Java chatroom that you can use for the online interviews, I'm sure Alex or one of the mods wouldn't mind setting aside a corner for you to work in

Anyways, give me a PM if you would like to hear my story, that way we can discuss specifics away from prying eyes.

Roxas

PS: I am a HS senior and have been accepted to the University of Wyoming in Laramie, WY.

Last edited by Roxas_XIII on 07 Jan 2009, 8:38 pm, edited 1 time in total.

I do have a formal diagnosis of Asperger's, but as I am unwilling to disclose my name over the internet (and my diagnostic papers are not publicly available information attached to my name anyways) you will have to take my word on that. PM me for any information you need. As you can see on the left, I am 19 years old, and I am also a college student.

As far as why some do not get a formal diagnosis: it is expensive, and there is generally little benefit to a diagnosis. I got one to satisfy my curiosity and allay doubts of hypochondria, and also to qualify for some accommodations at my university.

Unfortunately it's hard for certain populations to get a diagnosis and that causes studies like this to pull a pretty biased sample. For instance there's a pretty good argument to be made that females are underdiagnosed, and of course many adults never were. FYI.

Good luck though, it does sound like an interesting and worthwhile project.

I might be interested in doing this study on the basis of not having to divulge.

I'm sure you've thought of this already, but wouldn't going through a site like this weight the responses in a particular direction? I'm several standard deviations away from normal, but I would think (correct me if I'm not) that you'd need to limit your sample size to diagnosed AS

Hi,

Thank you all for your responses, and I look forward to interviewing those of you who are interested in participating. I completely understand the concerns about privacy, so just to be clear:absolutely none of your responses will be associated with your actual name. In fact, if you choose to participate, I will ask that you create a pseudonym for yourself in order to protect your identity. Additionally, as this study has been approved by an IRB I have ensured that all identities will be kept confidential for participants' protection. I apologize for not posting these details in my original message. I welcome any more questions/concerns that you may have.

Thanks!

Bianca - Hi. A lot of the older Aspies, persons who made it at least halfway through the school system by 2000, won't have a diagnosis because it wasn't even a recognized condition until about '94 or '95 - which means the info didn't diffuse out to the schools and parents until probably several years later years later (it's still getting there, in some places).

In my daughter's case (she's 21), we knew a few years ago, when she was still in high school, what the name of her "thing" is because she's so very like me, and I'm diagnosed. I've known all along that she wasn't quite like the other kids, but there really wasn't much to be done about it. She was functional enough to get to class and do well enough that there was no incentive for anyone to figure out her differences as far as the school system went. She was just considered one of those "unique, gifted, artsy" kids who didn't quite fit in. It's terribly expensive to get a private diagnosis.

Also, to keep her from having any potential problems with getting medical insurance, we didn't get anything for her in writing - which precludes an "official" diagnosis. In fact, my own diagnosis is verbal only at my request. Things are just too dicey (or have been in recent years) as far as medical insurers and what they will and will not do (regardless of the legality of their actions).

Her transition to college was not easy. My initial one was a disaster. Good luck with your research, I hope it gives you enough info to help out future students.

I still haven't seen Alex's endorsement here, by the way. And your IRB number at Princeton is...?

For those concerned about the credibility of my post/research, I spoke with Alex over the phone and asked for his permission to post on this website. I have also requested that he place a post on here in order to help reduce concern, and he will hopefully be able to do it sometime soon. With regards to the comment about the IRB number, are you referring to my protocol number?

The only reason I got an official diagnosis was because I'm the sort who needs to label everything. I wanted to know exactly what was wrong.

But I'm a bit curious, with confidentiality, how you'll prove that we're officially diagnosed. You're not the first person to come here to do a study (or claim to be doing a study).

Bianca: apologies for the paranoia with which we have been treating you. You are not the first person to come to this site asking for participants in a research study, and others have in the past turned out to be phishing scams. In addition, many Aspies have been taken advantage of enough times that we've grown wary of trusting others, especially as this site explicitly warns us against contacting people who request we e-mail them at an external address. First name + last initial also diverges from the standard pattern seen in most university e-mail accounts. We've grown to distrust people who come to this site asking for one thing, requesting to be contacted at an external e-mail address, and making no other posts than their requests for people to contact them.

However, some brief Internet stalking reveals a Bianca Love in the Princeton class of '09 on Facebook, which seems to check out as the 580 friends on that account (fb friend-whore) would be far too elaborate to fake for the purpose of phishing WP. This looks legit, so I think we can all stop questioning Ms. Love on the authenticity of her research. I would still warn you, Bianca, that your entire project will rest upon faith in the honesty of anonymous Internet respondents- you have no way of determining or verifying any of our identities or diagnoses. Whether you still think this is wise is up to you and your advisor, but as I said, I would be glad to help.

I think it is interesting that you want to do your project on Asperger's Syndrome of all the things out there, and I would help, but to be honest I don't feel like I can help you any. There is no big deal in transitioning into college, at least not for me. You just kind of do it. What all do you want to know?

It's because of the anonymity of the internet that I question using it. This isn't my project, but it's really not that difficult to find people offline who have an ASD.

Then again, it's easier to get people to talk online. Your research will suffer though. I'm surprised you managed to get approval.

I would like to ask those of you commenting on the research design to realize that my original post was simply meant to encourage interested individuals to contact me, and not to serve as my only means of recruitment. Additionally, the research involves several steps which I discuss with interested participants once they contact me.

Please note : Participation in the study WILL involve me knowing your actual name and you will have to contact me via phone in order to do a preliminary screening (several general questions about you and your diagnosis) before we can schedule an interview online.

I would like to take this opportunity to point out that Alex has yet to publically confirm Bianca's foregoing assertion. Be careful of what you tell her, whether it's in a public post or PM. Divulging private information, especially identity data, can be detrimental.

The probability of her lying is hilariously small however. Although if anyone was completely paranoid, I am sure they could phone her university.

The university may or may not know of Bianca's actions, or her real intentions (whatever they may be).

I've passed the matter along to Alex through a PM. Please exercise caution and discretion until he responds.