The Autism research study at Pitt rejected me

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Of course family takes precedence if you value them. Though from your post it's unclear whether you like them or not.

But you like LotR? Cool!

I do love my family in spite of the fact that they've said and done many things to me over the years which left much to be desired. They have acknowledged their guilt and mostly made up for these things though. My own feelings about this thing called love are very complex and confusing as it is. All I care to say is right now is that I sure hope i'm capable of feeling, understanding and giving genuine love.

That whole discussion is for another thread someday though. All i'm worried about now is finding the block of uninterrupted time and solitude I need in order to respond to you and everyone else in this thread. I always have a hard time keeping up with all the replies and threads here on WP in the first place. This is yet another source of great frustration for me as I have an infinite number of things to say and I can't bear the thought of leaving something important unsaid.

Anyway.....i'll reply to everyone as soon as humanly possible, but it make take several days for me to respond to everyone's questions and comments.


Yes....I do love the LOTR and all of Tolkien's Middle-Earth chronicles. I think it's safe to say Tolkien's creations are my favorite works of fiction...at least fiction within the imaginative genre. For one thing...I identify with various aspects of many of the characters, both "good" and "evil". Namely Gandalf, Aragorn, King Theoden, Denethor, Saruman, Gollum, Gimli, Treebeard, Tom Bombadil, Elrond and Galadriel.


Well....it is 5:05am and if I want to get up anytime before noon, I really better fall into the arms of Morpheus ASAP.

I leave you with the song I recently posted in the "Your" song thread.


May it be a light for you in dark places.... when all other lights go out.

You identify with Tom Bombadil? How unlike the conception I had of you. Aragorn rocks, though.

Yes I do. I strongly identify with his connection to the natural world and his detachment from the cares of humankind and the other conscious beings of Tolkien's world. There is much debate as to who Bombadil was among Tolkien scholars. Many believe he was one of the Valar or simply some sort of nature spirit. I tend to take a pantheistic view of Bombadil and feel that he is the embodiment of the traditional elements. To me....he represents my life-long yearning to be one with water, air, earth, fire and all things in existence in general.



Anyway....I don't want to hijack my own thread with any discussions of Middle Earth. I will begin to reply to your first post in this thread momentarily.

I was in the midst of replying to this yesterday when a big storm came through at around 5:00pm. Along with 62,000 other residences in the Pittsburgh area, we lost power. The power just came back on about an hour ago at 12:00pm, so we were without power for a total of 19 hours. The battery in my laptop died while I was trying to reply to your post here and I lost wireless access anyway.



AFAIK, there were no other participants present while I was there. The study accepts participants with (and without for controls ofcourse) between the ages of 8-45 though. Observable behavior is a bad measure for adults IMO as well and for many reasons. For example, I am far more comfortable around mental health professionals than I am around the larger NT population. MH professionals TEND to be less ignorant and judgemental when it comes to those with neurological differences.

If i'm in the presence of most NT's (at least those outside my immediate family and few close friends), then you'll see just how much eye contact I make and how good my non-verbal communications are in general.

The "memory thing" is odd indeed. I've been trying like the devil to make sense of it for decades and i'm no closer to doing so now than I was when I began. This was a big part of the reason I wanted to participate in this study in the first place. The study would've been the only access I have to any kind of neuroimaging. I can't afford any out-of-pocket and my insurance surely won't cover the costs. I tried to get accepted into other studies (including studies on memory disorders) but I wasn't eligible for any of them. Lastly...I tried to convince the neuropsychologist who evaluated me back in June to recommend some neuroimaging to OVR. OVR (occupational-vocational rehab) ordered this evaluation for me and covered the costs of it.


The neuropsychologist refused to recommend any neuroimaging even though he fully acknowledged the possibility that I could have significant memory deficits which elude detection on the conventional neuropsychological memory tests. He told me a PET scan would likely be more useful than an MRI in determining the neurological origin/s of any memory problems I may have. Nonetheless...he believed any more comprehensive neuropsychological assessment would only "serve to reinforce the problem that is facing me". Still...even if he would've been willing to recommend some neuroimaging for me to OVR, it is extremely unlikely they would've been willing to cover the costs of any.

For all I know....they may do so in the case of a few exceptional clients, but even that is doubtful. OVR has faced major budget cuts in recent years and they are hardly as generous with the services they offer as they were ten years ago. At that time...they paid ALL my college expenses which weren't covered by Pell Grants right down to parking stickers. These days....i'm really not sure yet what they will cover in terms of educational costs. I know it won't be anything like it was ten years ago though.


It seems like they do little more these days than hustle clients into menial, dead-end, wage-slave employment as quickly as possible and then pronounce them "success stories". It's so nice to know I live in the world's wealthiest nation who gives tax cuts to multi-millionaires while cutting services for the poor and disabled at the same time. After all....the multi-millionaires will threaten to take away our wage-slave jobs if we don't see to it that they can afford a 100ft yacht instead of paltry 50ft one.


Anyway.....the MRI studies utilized in this autism research study at Pitt are fMRI. AFAIK....there would be structural images available too, but participants may not be told anything about them unless some gross abnormalities are detected. In other words, if any neurological abnormalities showed up in the regions of my brain associated with memory, they probably would've told me about them. I realize this possibility was remote, but at this time, it was the only hope I had of trying to find out more about the memory problems I strongly believe I have.

If I do say so myself, I am pretty accurate when it comes to self-diagnosis. IMO, even more accurate than many of the psychologists i've seen including several who have adminstered the neuropsychological evaluations i've had. I have discussed all this in detail before on WP and you can read about it in my posts here if you wish:

http://www.wrongplanet.net/postt137746.html



In other words, I think I have every reason to believe I have severe memory problems that go far beyond the ones commonly associated (like deficits in visual memory and working memory) with the NLD syndrome and/or AS. While I hope i've somehow exaggerated or imagined them, they seem very real to me. It doesn't even seem to matter if they do have a genuine neurological basis or not since perception might as well be reality in many cases. Nonetheless....it would be nice if I had the opportunity to rule out any genuine neurological basis for them at least. The neuropsychologists have not be able to tell me more about any possible neurological basis for them than my own researches have.


I have asked several posters on WP about them and some of these posters are studying cognitive science, neuropsychology, etc...Needless to say....they have only been able to offer a million theories and no conclusions as well. I do believe there ARE diagnostic tools available which could determine a neurological origin for any memory problems I may have. Considering what was written in the article I linked to(in my first post in this thread) from the Oxford Journal of Neurology , these tools may not be limited to neuroimaging either. Still....they would likely entail considerable time and expense and are obviously not an option for me right now.

The neuropsychologist who recently evaluated me seemed to contradict himself. One on hand....he admitted that it is entirely possible I could have significant neurologically-based memory problems which elude detection on any of the standard memory tests like WMS. On the other, he refused to recommend ANY further testing even though he also admitted additional assessment would allow for a more comprehensive evaluation of my condition. He wrote the following in the recommendations section of the neuropsychological report he sent to OVR:

"This individual has had a chronic over-focus on his condition and perception of his impairment. He has been obsessed with the evaluation of his condition and does not feel that his condition has ever been adequately evaluated, diagnosed or addressed. This began as early as 1993 (actually this began when I was 7y/o or so...but that's another story) and has persisted for the last 17 years. It is likely that he will be unhappy with his current evaluation as well. While additional assessment would allow for a more comprehensive evaluation of his condition, this would only serve to reinforce the problem that is facing him.".

A chronic over focus on his conditon!! ! I wonder if this neuropsychologist would tell a person with a life-threatening illness that they have a "chronic over-focus on their condition???" While some here may take issue with the fact that i'm comparing life-threatening illnesses to a neurological disorder, they have not walked in my shoes for the past 40 years. The comparison is an apples/oranges one no doubt, but who is prepared to say the suffering i've endured for the past 40 years is objectively less than the suffering those with life-threatening illnesses endure? This neurological "difference", whatever it is ultimately, has robbed me of every dream, aspiration and goal i've ever had. The bullying and abuse I dealt with from K-12 and beyond was unimaginable and it has much to do with the inexpressible rage inside me to this day. All this is just the tip of the iceberg when it comes to the misery i've endured because of this neurological "difference".

Couple this with the fact that my family, close friends and just about everyone else aside from SOME mental health professionals and posters on WP have refused to believe I have ANY neurological problems at all. My self-diagnosis was never good enough for them until I was formally dx-ed with the very same things I was self-diagnosed with. Even after accurately self-diagnosing myself (and having objective and professional confirmation for these issues), these very same individuals STILL refuse to believe I could have the neurologiclally-based memory problems I strongly suspect I have.

So perhaps now you understand my frustration as well as why I have such a "chronic over-focus" on my condition. It has affected every aspect of my existence and I don't know why anyone in their right mind wouldn't understand why I have such "chronic over-focus" on it all.


As far giving you more information about the "memory thing" itself, I would be happy to do that WHEN TIME PERMITS and honestly, it may never do so. I have discussed the specific issues in much more detail in many of my threads and posts on WP. Needless to say....I don't expect you to read through over 1300 posts, but maybe I can send you some links to the relevant ones when I get the time. I still want to respond to other posters in this thread and I still need to dedicate time to my family during my remaining six days in Pittsburgh. The 19hr power outage that began at 5:00pm yesterday didn't make the former any easier ofcourse.


Suffice it to say now that the memory problems i'm referring to seem to entail serious and incongruous (incongruous because my cued/prompted/triggered recall for written and spoken verbal material seems at least somewhat intact while my free recall for the same seems very limited) in semantic, episodic and procedural memory. It is difficult to determine whether these issues are limited to long-term memory or if they manifest in both long and short term memory. I have speculated about the neurological basis of these memory problems and so have others here on WP. My speculations have included everything from some abnormality in the Fimbria region of my Hippocampus (since that region is made up of white matter and NLD is believed to be caused by white matter issues) to developmental amnesia which has impacted my semantic memory. DA seems to primarily impact episodic memory while leaving semantic memory largely, if not entirely, intact. There are apparently some cases of DA in which semantic memory is impacted as well however.


Anyway....that's all I can say about the whole thing at the moment. I want to start responding to other posters in this thread and this post has been long enough in any case. I will look forward to reading any replies you care to offer and send love back at you.

I took the ados last week. I thought it was really weird.

They might accept you considering you have an official AS diagnosis. It pretty much all depends on your performance on the ADOS. They didn't accept me because my eye contact and overall non-verbal expressions were indicative of a very mild spectrumite in their estimation. This DOES NOT mean i'm technically not on the spectrum, but I just didn't meet their specific diagnostic cut-offs.

I think you might have a better chance at getting accepted. It's not a bad deal for those who actually get accepted into the 3.5 day's worth of studies. They would pay for all your travel expenses and hotel costs. They would also pay you for all the studies you complete and you might make upwards of $100.00 if you complete them all. They paid me $25.00 and I was only there for two hours. I took the ADOS, four subtests off the WAIS-IV, a few other neuropsych tests like grip strength and they took my weight, height and head circumference. After all that, they immediately told me I did not meet their diagnostic cut-offs, cancelled all further studies, paid me and sent me on my way.

Personally speaking...the money was immaterial to me, but it might be an incentive for some people. Pittsburgh is actually a pretty decent town and there are worst places in the country to visit.

Thank you It was an expected disappointment at any rate. For now....i'm pretty much tapped out of any research studies i'd be eligible for. AFAIK...there are few in my area and aside from this one at Pitt, few accept out-of-town participants. My lack of an official AS/ASD dx doesn't make it any easier either. I've had six full neuropsych evaluations over the years and haven't been dx-ed with AS or any other ASD on any of them. I've just been told I exhibit most of the characteristics of the NLD syndrome and that I have one of the "odd/eccentric" cluster A personality disorders like Schizotypal or Schizoid.

I've also tried to get accepted into memory disorder research studies since I DO believe I have significant memory impairments which have thus far gone undiagnosed. So not only do I lack any objective confirmation for these memory problems, but most of the memory disorder research studies are looking for participants with Alzheimer's or other age-related memory disorders.

The best thing you could do is contact them. How old is your son? AFAIK.....they do not accept anyone under eight years old. Does he have an official AS Dx? If not....he still might meet their diagnostic cut-offs. The first thing I told them is that I do not have an official AS/ASD dx, but that I fit the characteristics of those NLD/NVLD. They told me I might be an eligible participant anyway. They asked me for copies of all my neuropsych reports and they did a 30-minute phone screening with me. They also had my mother complete the ADI-R in person while she was in Pittsburgh (we were both born/raised in Pittsburgh, but now live in Florida) earlier this summer visiting family.

Based upon all this info....they felt I was a viable candidate. They paid for my (and my mother's even though she wasn't involved in the study beyond the ADI-R they gave her in June) travel expenses and they would've paid for my lodging expenses if I needed them. Most of my immediate family lives in Pittsburgh though, so I didn't need to stay in a hotel. At any rate.....they rejected me based upon my performance on the ADOS. Needless to say....I can't tell you whether they would do the same with your son or not. If you're still interested, you should contact them. You really have nothing to lose since they'll cover travel/hotel expenses for potentially eligible out-of-town participants (assuming you do not live in or around Pittsburgh) and they will pay you for each study you complete. They paid me $25.00 and I was only there for two hours or so. If your son was formally accepted, he/you would probably make upwards of $100.00 for 3.5 day's worth of studies.

Thanks!! !


I'll be OK I guess.....I just feel like I have nothing to look forward to now. I have been trying desperately to get to the bottom of my brain and it's discontents for most of 40 years on this earth. I thought i'd have a chance to learn more from this study, but alas, i'm too "high-functioning" for everyone apparently.


It's really a cruel irony when some supposedly "lower-functioning" people have PhD's, good careers and live independently. My supposedly "high-functioning" self has nothing but an AA degree in liberal arts (which I obtained with course substitutions for mathematics), not even an minumin wage job and i've never lived fully independently (financially at least) of my family.

All this and my full scale IQ has been in the high average range or higher (all the way up to "very superior" at 143) on five out of the seven professionally-administered IQ tests i've taken in my life. My lowest score was still in the low-ish end of average on one test at 94.

"High functioning" indeed

Your post here would require a bit more time to respond to than those of several other posters in this thread. I will get back to you with a response ASAP

Thanks Cockney!! !

How much sleep are you getting every night? However, if a cue is enough but simply remembering things out of the blue is difficult, it sounds like it could be related to executive function.

Look into B vitamins, maybe. And I know lack of sleep will do that...

I average between 5-7 hours of sleep per night. The amount of sleep I get often depends on how depressed I am at a given period of time.


I don't think this has anything to do with a vitamin B deficiency, I believe I get plenty of vitamin B in my diet. My executive functioning is definitely impaired and I do have objective confirmation for that at least. The neuropsych who recently evaluated me told me I appear to have some frontal lobe deficits. AFAIK....the frontal lobe has little or nothing to do with any aspects of memory beyond working memory and maybe some types of short-term memory in general.

My working memory is actually pretty good based both upon my own self-assessment and the results of the neuropsych evals i've had. My working memory index score on the recent WAIS I had was 111. It has been even higher on other WAIS tests i've taken in the past.

From personal experience, I know that that may not be enough sleep for everyone. Unless you've had experience with getting more sleep and found that your memory was still impaired, my working hypothesis is that it's partly an executive function issue, exacerbated by the effects of lack of sleep on memory and on executive function.

As far as I know....executive functioning has nothing to do with semantic, procedural and episodic memory though. These are the very aspects of memory I believe I have a problem with (again....aside from visual memory deficits and my problems there are mild and fairly common for those with NLD/AS in any case) and if so, they have never been objectively confirmed. It is difficult to determine whether these problems could be considered deficits in long term memory, short-term memory, or both.


I believe they are limited to the former since the conventional memory tests are comparatively reliable when it comes to assessing short-term memory and i've always scored in the average or better ranges on those tests.

There have been many periods of my when i've slept 8 hours or more on average and my memory seemed no better or worse during these periods.


In any case....i've never heard that executive functioning has anything to with the types of memory i'm referring to. If you have heard otherwise, i'd sure like to know what you've heard in this regard and where you heard it from.