The autism research study i'm participating in.

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I received the information packet today for the study i'm taking part in at the University of Pittsburgh in September. I am somewhat perplexed by a number of things mentioned in this info packet. I suppose I will have to contact the research specialist i've been dealing with, but I really hate talking to people over the phone all the time. First of all, a copy of my testing schedule was included. This schedule is tentative however since their fMRI time slots are not yet confirmed. Furthermore...on the first day, i'm supposed to take the ADOS from 9:30am-11:00am and then an IQ test from 11:00-12:00. I already had an ADOS over the phone with this same research specialist. That ADOS took 1/2 hour to complete and this one is supposed to take an hour and a half.


I'm wondering if this testing schedule is just part of a form letter they send to everyone or if I really have to take another (and a longer one this time) ADOS in person. Also, I was told in NO UNCERTAIN TERMS that I would NOT need to take an IQ test. I already mailed them copies of five IQ /neuropsychological tests i've taken in my life. They received these reports about two months ago and told me no further IQ tests would be required from me during the actual study itself. So again....i'm not sure if this just part of a form letter, or if for some reason, they need me to take another ADOS and/or IQ test.


The research specialist "reminded" me (and again...this MAY be a form letter) that the first set of testing (the first day which supposedly includes the ADOS/IQ test) is still designed to screen for eligibility and subsequent testing will be cancelled if I do not meet their diagnostic cut-offs. Based upon what I WAS TOLD up until receiving this info packet today, I was under the impression my eligibility HAD been determined. I sent them five copies of all the IQ/neuropsychological tests i've taken (though I just had another one recently and they told me it wouldn't be necessary to send them a copy of that report). I also completed the ADOS with this research specialist over the phone. My mother completed an ADI-R with them in person while she was in Pittsburgh back in July (visiting family....we were both born and raised there). In other words, I just don't know how many more tests they require from me in order to determine my eligibility already.

Again...if this was just a form letter, then maybe they don't need me to take another ADOS or IQ test. It's just hard for me to imagine they would cover all my travel expenses (which they already have) AND be willing to pay for hotel expenses if my eligibility hasn't even been determined for certain yet. I don't need to stay in a hotel since most of my immediate family lives in Pittsburgh and i'll be staying with them. This is beside the point however, the fact of the matter is they WERE willing to cover my hotel expenses if I would've needed to stay in a hotel. At first they seemed a bit reluctant to take me on as a study participant precisely because I would be an out-of-state participant.

I really don't know exactly what's going on here and I guess i'll have call them (though I will do so quite grudgingly) for a little clarity here. The instructions (in regards to air travel, directions, the nature of the tests they perform, etc...) they offer to participants on their website are literally infantile in their simplicity. In contrast, it would've been nice if everything in this info packet was at least moderately unambiguous.

These are not the only things in this packet which have me scratching my head. For example....while the bolded parts of the following is most likely a typo (or the whole thing is just a form letter), I really don't know what i'm supposed to do here:

"Thank you for your interest in our research. We are looking forward to meeting you in September. Part of our study is a genetics study. We do a blood draw with all willing participants and their families, and the blood undergoes a process called karyotyping. The chromosomal structure of the blood is analyzed, and we will be looking for any abnormalities that may correlate with autism. I have included this consent document for your biological father to sign if he is willing and available to complete the genetics portion of our study. If he would like to participate in this part of the study, please have him sign the highlighted areas and bring it back to us when you come in for his testing. We will eventually send you a blood draw collection kit in the mail, which he can take to the local physician or hospital. We will arrange for payment of these services and there is no cost to you. All instructions will be included in the mailed kits".



Can anyone see the problems here? First of all...they never said anything about my bio father coming in for ANY sort of testing himself. They DID mention they may want some blood from him (and/or possibly other family members) for genetic testing, but what's with the "when you come in for his testing" part? I am 99.9% sure this is just a typo on the part of the research specialist, but I need to be CERTAIN when it comes to stuff like this. Nor do I understand why they just wouldn't send this blood collection kit to HIM in the mail. They are fully aware of the fact that I live 1200 miles away from my bio father, so why would they mail ME the kit to mail to HIM??? I am supposed to get a blood draw while i'm actually participating in the study. They only want him to go to a local physician/hospital to get blood drawn for the karyotyping.

Again....much, if not all, of this may very well be a form letter they send to every participant/potential participant. Therefore...it is likely all this can be chalked up to a form letter which excluded any specifics for me personally and/or a typo in the case of the "when YOU come in for HIS testing" thing. Nonetheless....this sort of ambiguity makes me nervous and I am a person who likes 100% certitude with things. I REALLY, REALLY hate to call them again because for one thing, I hate to feel like a pest and for another, I get very nervous and tongue-tied when I talk to people over the phone. No one else will call in my behalf either. Also, the research specialist said she enclosed the medication table they filled out with me at the time of my phone screening (and the ADOS was part of that same screening) detailing what medications I was taking at the time. There was NO medication table included in the packet. I was supposed to review this nonexistent table and mark whether or not there have been any changes in the medication/s i'm taking and then date and initial the document.


There have been changes in my meds since I filled out the med table with them a few months ago. I am now taking 60mg of Citalopram (Celexa) instead of Cymbalta and I have been doing so for over a month now. They told me to let them know immediately if there has been any changes in my meds as it might affect my testing. Since that was self-evident to me in the first place, I already had the foresight to ask my psychiatrist if he believed any of my testing in this autism study would be affected by Celexa. He said he doesn't think so, but that's hardly his area of speciality so he can't know for sure. In other words, it looks like i'm going to have to call the research specialist anyway to let her know i've changed medications. This is turning into somewhat of an odyssey. I could swear, based upon their very own words, my eligibility was already determined, cut and dried. Considering what was said in this info packet, that may not be the case however. I sincerely hope I don't have to go all the way to Pittsburgh only to learn I don't meet their diagnostic cut-offs on the first day and that all other testing will be cancelled for me as a result.

I thought all this had all been established already....I really didn't want to go to Pittsburgh in mid-September anyway. I wanted to go between June-Aug when the weather is ideal and I can do stuff outdoors with my dad like whitewater rafting, sailing, canoeing, etc. The only reason I agreed to is because it took the researchers so long to officially accept me (or so I thought) into the study. So this whole thing has me rather agitated tonight and i've become tired of all the back-and-forth with them over the phone, through the mail, etc.....


Over the phone I get.... "No need for any further IQ tests oh falcon-headed one".

In the info packet I get..."11:00am-12:00am-IQ testing".




and the other aformentioned contradictions, ambiguities, typos, confusing form letters, or dog knows what.


WTF???


I mean seriously....you go from this http://www.wpic.pitt.edu/research/CeFAR ... tories.htm sort of spoonfeeding (however necessary it is for some adults with autism or children...click on the various "short stories", scroll through them and you'll really see what I mean by spoonfeeding) to all the aforementioned inconsistencies and equivocalness.


Sorry....I just wanted to vent about this lunacy.

Getting so tired I can't type straight, so I can't answer this tonight, but I hope somebody keeps this thread alive enough I'll find it again easily tomorrow. I've got some thoughts that'll hopefully encourage you. We'll see. Pop off a quick PM to me with a link to it if you could, so I don't forget.

Will do. To be fair to the folks at the study....i'm not CERTAIN it WAS an actual ADOS which I completed with them over the phone. It's possible it could've been some other test, maybe a test known as an ACE If so.....i'm assuming that means autism-something-something. This is because I did receive a form in this info packet which states the following:

"Information recorded on this form comes from the ACE Phone Screening Consent Form or ACE Phone Screen Interview. This form is completed for all subjects enrolled in ACE study".

Well...I DID complete a phone screening with them a few months and could SWEAR it was an ADOS. I KNOW my mother completed an ADI-R with them and I KNOW I sent them copies of all the IQ (save one I took in 9th grade which I don't have a copy of)/neuropsych tests i've had.


So now i'm totally confused. To make matters worse, I feel like i'm being constantly drowned in a sea of acronyms in this postmodern society.

ADOS, ACE, ADI-I, NLD, NVLD, AS, ASD, PDD, PDD-NOS, IPO, NCLEX, MCAT, SAT, GRE, LSAT, GED, LED, etc....ad infinitum

this study has someting weird in it ...if i were you i would not particate iq tests are fine but blood drawing kits via mail? and no one mentioned about those in first place DONT DO IT if they have your blood it can be used to even make a crime scene

1> it's a form letter. Was the person who assured you there were no more tests directly involved with the company/organization doing the study? If yes, quit worrying.

2> the father's blood bit was poorly worded. It's intended to be read "Bring in dad's signed consent form when you come to the evaluation meet."

3> Dad is gonna get a kit in the mail, go to his local hospital, and they're going to do blood tests, then send the results (just a piece of paper) to the researchers.

4> You need to ask yourself why you are participating in this project. It sounds to me like they are trying to learn what makes people autistic genetically. Which has evil overtones to some extent (GATTICA!).

They did mention the blood tests in the first place. I really don't think a legitimate autism research study at the University of Pittsburgh will be using my blood to make a crime scene. They simply want my blood and that of my bio father's for the purpose of a karyotyping study. There is no more reason to believe my blood will be used for some sinister purpose than there would be when I have blood drawn at my family doctor. I was just wondering why they would mail me the kit so I could mail it to my father instead simply mailing it to him directly. I was also would why they asked ME to bring in the consent form for this blood work when I come in for HIS study. I spoke to the research specialist a few moments ago and as I suspected, this was merely a typo. They were under the impression that my father lived in the same town as I do, so they thought I could just give him the blood draw kit in person. In short....all I have to do is get him to complete the consent form and then bring in it with me when I come in for the study. They will then mail him the blood draw kit and he can go to a his GP or a local hospital and get the blood drawn. The doctor/hospital will then expedite the blood to whatever lab performs this karyotyping study.

Okay, let's see if I can remember where my head was when I read this the first time. First, I didn't read the whole thing, but there's a reason I didn't. Because the details don't matter so much. Here me out, and I think you'll understand why. When I first looked at your post, it reminded me of a set of posts I made to a college class forum about a totally different issue, but it was the kind of post it was, and the tone that looked so similar to mine, it got me thinking about a couple of things.

About two and a half years ago, I discovered I needed to upgrade a software I had in order to participate in a course I had already signed up and paid for. To make a long story short, getting it upgraded turned out to be a royal cluster----. In the end, I had to buy a new computer, a new audio interface, it was about five weeks into the course before I got everything up and running, and the cost of getting it all working right was in the thousands.

While I was going through it all, I kept posting updates to the class forum. Those updates looked a lot like the post you made here. My reasoning for doing it was a little different from your own. I was doing it because I knew there were other students getting pretty frustrated with the upgrade as well. I thought that if I could show them the crap I was going through, that in the end I got through, and did get everything working, it might encourage the others. It did for a few. Of course, another reason I did it was because I needed a place to blow off the steam. The whole program was entirely online so the only way to share my frustration was to post it.

All that said, the similarity between the two is they are both cluster-----.

I got through mine because it was THAT important to me. I sounds like participating in this thing is somewhat important to you. If you are anything like me, you might get more frustrated when things go wrong with things that are important to you than with things that aren't so important to you.

If that's the case, here's some things that can help you get through it all or maybe help you decide whether to bother continuing.

First, **** happens. I know you know that, but the bigger a project is, and the more people there are involved, the higher the chance is for screw ups and things that don't make sense. If taking part in the study is that important to you, try to find a way to laugh them off. After all, it's not your study, and you aren't ultimately responsible for how its run.

If the integrity of the study is highly important to you (and I suspect it is), and you begin to feel as though the way things are being done probably wont produce accurate and meaningful results, or worse, produce misleading results, you can always quit. If you choose to, do it with your head held high.

If you are confident in the way the data is being handled, and feel the study may be of importance, and want to be a part of that, do it. But keep in mind there are some things that can happen during the process that may make you feel as though it was all a waste of time. If the study is being run properly though, I can assure you it's not a waste.

Even if, sometime down the road, they determine you should be eliminated from the core sample group, don't take that as them telling you your participation isn't of any use to them. It is. If they're doing things right. In good studies, a lot of people can be eliminated from the final core sample group. This doesn't mean those people aren't important to the study. They are. Any people "set aside" from the original group they screen have to be accounted for.

The bigger the group they start with, the better the chances of getting a good size core sample and more accurate results. All those who quit are not even mentioned in the study (usually ~ some studies do track how many participants were asked and how many quit, but that number isn't very useful for anything). If you stay on though, until they determine you either are or are not included in the final core, either way your participation is important. It's important because anyone they decide should not be in the core sample must be accounted for and explained in the study. That information is just as important as all the final data and conclusions.

So I guess now, and at points along the way, you'll kind of have to ask yourself whether you believe the effort is worth your time. Whether it's worth all the problems that come with it. Rant about it if you need to, then take breathers. Deal with one problem at a time, or list your concerns, and talk to someone in the program about them. Don't be snowed either. You have a right to have any questions you have about the study. They want your participation, right? On the other hand, pick your battles. A test subject that's a constant pain in the arse may not be worth it them to deal with. If there is so much concerning you about how the study is run it would take hours of phone calls to clear up for you, it may not be worth it, and it may be better to just drop it.

Research studies are important though, as I'm sure you feel, otherwise you wouldn't have volunteered. They shouldn't be taken lightly. Studies have the power to sway people's views, politics, and how much and where money is spent. I would want to feel extremely confident in how the study is being conducted. There's a lot of screw ups that won't affect the results, but there are quite a few that will.

I think you should go with your gut. If it feels right, do it. If it feels wrong, don't.

I know the situations are very different, but I stuck through all the garbage of my upgrades. It did cost a pretty penny and a lot of frustration, but I ended up with a home studio far better than I had ever anticipated, and I'm really glad I did it.

It was a form letter and yes, the person who assured me there would be no more tests is directly involved with the research study. She is research specialist who is directly involved with this study at the University of Pittsburgh. I spoke with her a few minutes ago and it turns out the causes of most of my concerns were the result (as I suspected...but I had to be sure) of typos and the fact that much of the info was a form letter. I DO have to take the ADOS however. For some stupid reason, I was under the impression that the 1/2 hour phone screening I performed with her a few months ago WAS an ADOS. It was not, but I don't know what the technical name for that phone screening was and it's not important. I might have to take another IQ test because the most recent one (that I sent them a copy of) was administered in 2006 and they need a more current one. I just had another IQ test about two months and she told me they will probably accept those results and therefore won't need to administer their own IQ test when I participate in the study.

I might need to mail them a copy of this latest IQ/neuropsych test or perhaps I can just bring it with me when I come in for the study. She needs to talk with someone else about all that and she said she would let me know on Monday.


I personally see no reason to suspect any "evil overtones" here. I don't understand what's so sinister about wanting to learn more about the genetic factors that may be associated with autism. With all due respect, some of you people seem a bit paranoid when it comes to things like this. I think the anti-cure movement is legitimate overall, but there is no need to become hysterical and irrational about things either. There ARE legitimate researchers who merely want to learn more about autism and I see no reason to believe Dr. Joseph Mengele is behind the scenes of this particular study....lol.

Another poster in this thread went so far as suggesting the blood that I and/or my bio father will provide for them might be used to "make a crime scene". Perhaps they'll send some of my blood to the illuminati or the freemasons as well? Maybe the reincarnation of Aleister Crowley will use some of it in a blood ritual?

Mr. Xxx~


Thank you for your reply, but most of my concerns have been resolved (for the present, at least). I spoke to the research specialist about an hour ago and she cleared everything up for me. As I suspected (but I like to be CERTAIN when it comes to things like this), most of my concerns were due to typos on her part or to the fact that uses a template which is "universal". In other words...alot of the info WAS a form letter. I DO have to take the ADOS however and that's the only thing here which was my fault. For whatever reason, I was under the impression that the 1/2 hour phone screening I performed with her two months ago WAS an ADOS. It was not, so the ADOS is the first thing i'm scheduled to do when I show up for the study. Also...she forgot to include the medication table in the packet, but I updated her about the change in my meds and I don't think that will be a problem.

I might have to take another IQ tests with them, but I doubt it. While I did send them copies of all the IQ/neuropsych tests i've had, (at least ones that I have records of) the most recent one I sent them was administered in 2006 and they need a more current one. I did have another one about two months ago and I previously asked her if I would need to send a copy of that one. She said that wouldn't be necessary, but apparently, she was wrong. So now I either need to mail them a copy of this most recent one or just bring it with me when I show up for the study. She will let me know about all that on Monday and either way, she told me I probably won't have to take another IQ test at the study as the results of this most recent one should suffice for them.

So everything is cleared up for the time being. They are studying people who are on a certain part of the autistic spectrum and I asked what this "certain part" entailed. She told me that essentially they can't accept anyone on the spec who is too low-functioning meaning they are either non-verbal, their IQ is too low, or they are otherwise too impaired to take part in the study. Specifically....they are looking for people on the spectrum who have average ( or higher) IQ's and who display clinically significant manifestations of a spectrum disorder. IOW....some people are ruled out because their ASD symptoms are too mild to meet the study's diagnostic cut-offs. As of yet, no one can determine whether i'm one of those people or not. I do not have an official AS/ASD diagnosis and I made that perfectly clear to them from the beginning. I do fit the general profile of those with NLD/NVLD on every neuropsych eval/IQ tests i've taken however. Since NLD is not a formal mental disorder, this has always been officially dxed as LD-NOS or Mathematics Disorder. Nonetheless....they believe i'm a good candidate for the study and my ultimate participation in it can only be determined after the first day of testing (which includes the ADOS). The ONLY reason i've never received an AS diagnosis is because (according to the psychologists who've tested me) I do not engage in repetitive and stereotyped patterns of behaviors, interests and activities.

I disagree with this, but apparently the psychologists who've tested feel that I don't engage in any of these things. I look at it this way...I obviously fit the overall NLD/NVLD profile AND i've been dxed with either schizotypal, or schizoid, personality disorder on EVERY neuropsych evaluation i've had. I obviously do show a qualitative impairment in social interactions that is common in both NVLD and the aforementioned personality disorders. Call me crazy....but all this sounds close enough to the usual AS criteria to me.

You are going to love your MRI especially if it is narrow bore instrument. Take my advice. Do not think of King Richard III and Clarence of George was drowned by being shoved head first into a barrel of wine.

The first time I had an MRI, I freaked out.

ruveyn

AFAIK, it is a narrow bore instrument. It certainly appears to be one from what I can tell ffrom the pictures on their website.


http://www.wpic.pitt.edu/research/CeFAR ... s-fMRI.pdf


While I am a bit claustrophobic and I have tendancy to get panic attacks, I think i'll get through it. I usually deal with my fears pretty well once i'm actually faced with them. For example, I always thought I would freak out the first time I saw a large shark while snorkeling/scuba diving. When I finally did, I found the experience quite stimulating and rewarding. I was momentarily startled since the shark came out of nowhere and disappeared just as quickly, but that's about it. I actually went looking for the animal afterwards since even divers don't get the privilege (however dubious said privilege is for some) of seeing a shark on every dive trip.

I should mention this was *only* a 6-7ft caribbean reef shark and that species doesn't pose much of a threat to humans. Had it been a large bull, tiger or great white shark, i'm sure my reaction would've been quite different. Nonetheless...I couldn't identify the species a nanosecond after seeing it and thus, I always thought my reaction to the initial sight of a large shark would be much more fearful than it ultimately was. I thought I would be the second person in history to walk (or more accurately...run) on water.

I'd look at that the other way round. Blood tests are fine, but if they think IQ tests are useful I suspect their survey won't provide any shocking illuminations. ^^

An IQ above 80 is one of the eligibility requirements. The only reason they give IQ tests at the study (or ask potential participants to submit copies of recent IQ tests) is to rule out anyone who doesn't meet that requirement. It gets complicated because many people with autism (especially those with language problems, significant isses with motor skills, working memory deficits, processing speed problems, etc...) may score close to, or within, the MR range on IQ tests like WAIS. I'm assuming they're using the WAIS IQ tests in this study and not something like Raven's Progressive Matrices which many of the aforementioned individuals perform much better on. In any case...they don't want anyone who is too "low-functioning" by their definition of the term. Many of the people on the spectrum with significant degrees of the aforementioned issues might be considered low functioning by their standards no matter how they perform on ANY IQ test.

In other words...I guess they're only viewing IQ tests as useful insofar as they can quickly rule out anyone who is too low-functioning (by their standards) to perform well on conventional IQ tests like WAIS. It is not used to make any ultimate determinations about anyone's "intelligence". I sent them copies of five IQ/neuropsych tests i've had in my life a long time ago. They told me I would not need to take another IQ test at the study if I sent them these copies. Apparently the person who told me this wasn't "in the know" enough to realize that even my most recent IQ test at that time was too old for them to accept. I've taken another one since I sent them copies of all the others.The research specialist told me today that I either need to mail this most recent one to them, or just bring it in when I show up for the study. She will let me know about all that on Monday and either way, she told me I probably won't need to take another IQ test during the study.