Research!! ! Please help me!! !

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I am in college. Due to my aspergian ways, my professor in the Education 215 class assigned me a case study project on autism/asperger's in adults. She actually still participates in studies herself and stated that there is a great need of understanding for this segment of the population.

So, here is what I am asking (begging, on my knees!)

If you are willing (no real names) to give me some specs on your childhood and adulthood thus far, I would be so very grateful. PM the information to me on this server if you are willing. Here is what I need:

1. Age
2. Gender
3. Diagnosis
4. Childhood experiences with ASD. Were you picked on? Social issues? Anything you want to tell me.
5. Adulthood experiences, particularly in college and/or the workforce.
6. Your take on asperger's/autism. What does it "mean" to you? What is it like for you? What is your life like? Be as honest as possible, no matter how bad or good.
7. Any therapies, meds, etc. you've tried.
8. ANYTHING you can think of that may be of interest.

I repeat, NO ONE will know who you are. This is actually of great importance to me for several reasons. Maybe it will open some eyes and someone will begin trying to help us in a realistic manner. My instructor hopes to really move research forward in this area quickly due to the amount of ignorance here.
Also, when I graduate, I intend to work mostly with auties/aspies and try to help where others have failed. I do this for my children, for me, and in honor of all of us who have suffered needlessly and unfairly.
PLEASE help me!! !
Annabel Lee

These questions seem a bit vague. I'm somewhat surprised that an IRB would have approved them so that you could begin your data collection.

Agreed wholeheartedly.

Specifics! Please.

Actually I think it's great. More power to you. Any help you can give to aspie's is good.

What's an IRB?

I PM'd. Not 100% clear on what you were asking, so if you need more clarification or anything, just let me know.

Institutional Review Board. You can't collect primary data for college research, even if its just something such as observing people in a public place, without first getting IRB approval to ensure that no subjects will be harmed from your data collection.

There can be exceptions granted to this, but again its the IRB who needs to review your project to grant those exemptions. Without prior IRB approval, any data you collect is useless for anything other than your own personal knowledge

LOL! Guys, general questions first. I will ask very specific questions of the ones willing to speak to me on this issue. I will post more detailed questions within the week if that will assist you. I was mainly getting a general survey of what I will have to work with. Those were for basic background information.

Annabel

You would still need IRB approval before you could collect even that data though if you plan to use it for anything more than a casual conversation with your professor.

You should definately talk to her about that because your entire project can be ruined by collecting some data, even that which seems trivial, prior to getting IRB approval. And IRB approval usually takes a minimum of 2 weeks when you have everything in order. As long as you are at a decent university it should take you about a week to get everything order so you can submit to IRB - you'll typically have to take some stupid online test, write about what has been studied so far, why that indicates there is a need for your research, and a bunch of other stuff. My IRB proposal was 25 pages when I was finished.

Do I need to go to the Institutional Review Board to get their permission to collect data about what they do with the data they collect from giving permission to others to collect data?

If you will be using any primary research, yes. If you will however, just be doing things such as looking up federal laws, and citing sources, (typical undergrad stuff) than no

if it's anonymous how can subjects be harmed?

You need to prove to the IRB that is anonymous. How can the IRB say that no subject is harmed by your research if you don't submit the proposal to them showing them that?


This is a bit of a professor's message from one of my classes:



You also need to tell the IRB things like how the information you collect (even anonymous information) will be kept private (not I'll keep this in my personal email/paper data in my house), when it will be destroyed (generally after 1 year) and you need to have something that clearly explains to your subjects exactly what you will be doing with the information that you solicit. Also, considering that medically aspergers as seen is a disability, you would need to specifically address this and specific problems that may arise because of that (and don't take that as an affront, you'd need to do the same if you were interviewing pregnant women).

That IRB thing sounds extremely complicated and with lot of bureaucracy...

If you don't have their name, picture, phone number or address there's no way you could locate someone.

This looks more like a poll to me. Marketing people do them all the time, and that's the way they do them, no name, no phone number. I did a lot of that in uni and people always remain anonymous.

poll or survey you still need IRB approval, or your research is completely worthless. Furthermore, if you get to the point where you really see a valuable connection in yoru data and you want to do something with that connection, you can't, because you didn't have IRB approval in the beginning. Its federal law. I know some profs we had on campus about ten years ago were pissed off because they tried to get IRB approval after collecting their data that they wanted to publish as it was making a significant contribution, but IRB doesn't approve after the fact, so they couldn't do anything at all with all of all of their research.


Anna, if you are comfortable telling me your university, I'll get all the details for you. (after all I'm working 20 hours a week at a job where I spent about 19 hours a week on the internet doing whatever I care too, so I have plenty of time to dig up all you need)

All of which assumes that she's in the US. This is the internet, she could be anywhere, the regulations may be completely different.