Exciting news for me!! !

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I have FINALLY been accepted as a participant in the autism research project at the University of Pittsburgh. This is after I provided them with all the information about myself save the exact weight of my soul

I sent them copies of all the neuropsychological evals i've had in my life. I completed the ADOS with them over the phone and my mother completed the ADI-R family interview with them during her recent trip to Pittsburgh (we are from Pittsburgh originally and lived there for much of our lives. Most of our family still does) to visit family. This is what it took for them to finally determine my eligibility.

I am scheduled to participate sometime during the week of Sept 19th. I would've preferred to go before August is over, but that's not an option. Their MRI scanner is under repair and won't be up and running again until mid-August, so the whole study is on hold until then anyway.

Another positive thing is that they will reimburse me for my travel expenses. Since airfare seems quite expensive right now, (though I suppose it will be cheaper by Sept) that's an especially positive aspect of all this. They would also being willing to cover my hotel expenses, but that won't be necessary since I can stay with family in Pittsburgh. They seem quite eager to include me in the study and i'm not entirely sure why since i've NEVER been officially Dx-ed with any autistic spectrum disorders. I made that abundantly clear to them several. All I know (based upon self-Dx AND what all the psychologists who've tested me have said) is that I exhibit many, if not all, the common cognitive, psychomotor and socio-emotional characteristics of NVLD.


From what little I can gather from the people i've spoken with at the study, they are looking for individuals with NVLD to participate in the "with autism" group (as opposed to the neurotypical "without autism" control group) so they can compare/contrast them to participants who have been officially Dx-ed with Asperger's.

As many of you know...NVLD is not an officially APA-accepted mental disorder in the first. There is a difference of professional opinion as to whether NVLD is really just one and the same with Asperger's or not.

At any rate.....i'm very excited about all this and I hope this study will yield some deeper insights into my brain and it's discontents. If nothing else...I HOPE I get the chance to ask the researchers alot of questions about my overall cognitive functioning, memory, problems with math, etc....These questions have been tormenting for most of my life and thus far, I don't think i've received any adequate answers for them in spite of all the neuropsychological testing i've had and my own researches on the web, in print, etc.....

That's great...you have been wanting to do an MRI study for a long time...I remember you posting about it a few times.

Let us know what you find out. =)

thats great

Oh Horus that's wonderful!

I've read all your posts about your quest to understand your brain and this seems like it will shed some light.

So, are they going to pay you in any way besides compensating you for airfare expenses?

Yes I have... but it remains to be seen whether this particular MRI study will tell me anything of significance or not. They perform some fMRI's as part of this study and those in themselves aren't likely to tell me anything about the origins of the memory problems (among other issues) I seem to have. The researchers haven't been able to tell me anything in this regard either. The neuropsychologist I just saw told me that he believes a PET scan might be more useful for me. This study doesn't include PET scans though and I can't afford one out-of-pocket
right now anyway. OVR covered the costs of the visit/testing I had with this neuropsychologist, but they will not pay for any neuroimaging and neither will my insurance.

As far as I know, there will be structural images (most likely a whole-brain analysis) available as well though. A structural whole-brain analysis MIGHT be able to determine something, but I just have no way of knowing right now.



Anyway...thanks and i'll be sure to keep everyone on WP posted

Thanks!! !

I hope it will...but I don't want to be overly-optimistic about that either. As much as i've been wanting to undergo some neuroimaging, I must admit i'm a bit apprehensive about it. I've never had an MRI and since i'm very claustrophobic, i'm hoping this is an Open MRI rather than a whole body scanning tunnel. I should've asked them, but with all the other questions I always have for them... I forgot. I'll ask them next time I talk to them and I will need to sometime before my actual participation.


I will undergo the MRI either way though....it will just very scary if it's a tunnel scan and I hope I don't have a panic attack

Congrats, hope it all goes well.

I'm not sure about that, but if anything, it would be a very small amount (like $50.00 or something). Money is not even on my radar screen here, it has nothing to do with why I want to participate in this study.

Thanks!

I'm excited for you, and I hope that everything goes well, for you.

Very cool! I know you have been wanting this for a long time, so congratulations! Hopefully you will get some answers, or at least some information or pointers.

How far are they flying you, if you don't mind me asking? I'm asking because I'm kind of curious about this study now, and I will be living in PA (albeit the eastern side of the state) starting next month. What I want to do first though is to go for an evaluation at the UPenn Adult Developmental Disorders clinic because my NLD has been an issue with employment and I want to find out more about it, and what I can do. When I got diagnosed originally I wasn't really given any useful information about how to manage it, but the UPenn program actually focuses on that aspect. But maybe I will check out that study after!

Thanks Lost in Space I was going to say alot more, but I want to go swim some laps before it gets too late. They are flying me from Ft. Lauderdale....roughly 1200 miles. You very well may be eligible as it SEEMS like they are eager to accept participants with NLD who do not have an official AS/ASD Dx.

Cool! I will definitely check it out. Enjoy your swim!

Congrats Horus! I remember you talking about this before. I'm so happy that you are going to be a part of this study. It sounds fascinating, I hope you will share your experience with us afterwords.

Taupey