The Autism research study at Pitt rejected me

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The brushing-your-teeth-to-the-alien thing looks for joint attention (do you look at your "sink" and at the person testing you to see if they're looking too?), use of demonstrative gestures, eye contact.

It has been mentioned in various studies that the ADOS may not catch people with Asperger's. I kind of fall between Asperger's and autistic disorder, depends on the day, and I scored at the minimum cut-off for the study (4) on the ADOS. In terms of social functioning I am quite mild, just very shy, but I struggle more with communication than a lot of folks with Asperger's do.

I was diagnosed with many things myself before I was told I exhibit the general characteristics of NLD/NVLD. Keep in mind that NLD is not an official mental disorder. Therefore, i've formally been dx-ed with LD-NOS or Mathematics Disorder on five out of the six neuropsych evals i've taken in my life. I received no LD diagnosis at all on the evaluation I had in 2006. I suppose this is because the neuropsychologist who tested me felt my IQ scores were too high to warrant one. Even my performance IQ was in the high average range on that one at 111. My verbal IQ was 155, so there was a 44 point discrepancy between VIQ and PIQ. These scores yielded a full scale IQ of 143, which is in the very superior range.

The neuropsychologist was obviously ignorant of NVLD and while he realized the large gap between VIQ and PIQ was very unusual, he didn't believe it was indicative of a defacto learning disability. To that extent, he was correct, as a discrepancy between VIQ and PIQ in and of itself is not necessarily suggestive of NLD. Rather, an individual's PATTERN OF SCORES on the subtests is a better indicator. Usually people with NLD tend to see their worst performance on certain PIQ subtests like Block Design and Object Assembly (Object Assembly is no longer used on the latest edition of the WAIS. I believe this is because the reliability coefficient of that subtest was too low at .70 or something like that.) and their highest scores tend to be on Verbal subtests like Information and Vocabulary.

My subtest scores on this WAIS were no exception to this general NLD pattern of scores. According to the leading NLD researchers like Dr. Byron Rourke and the late Sue Thompson, it is irrelevant whether or not both the VIQ and PIQ scores are above average. Rather...the discrepancy between these scores AND more importantly, the pattern of scores on the subtests should be considered when determining whether or not a person exhibits the NLD syndrome. Thus...this neuropsycholgists really wasn't aware of what it takes to make a fairly reliable "diagnosis" (albeit an unofficial one) of NLD.

I was dx-ed with schizotypal personality disorder on this neuropsych eval though. At any rate.....I always knew there was something amiss with me neurologically speaking. I realized this from the time I was seven y/o and for all intents and purposes, I was self dx-ed with NLD when I was 14. This was long before I even heard of NLD and not many psychologists were aware of it at that time (1983) either. Therefore, I was self-dx-ed with a certain proposed personality disorder which has never been formally accepted by the APA. According to Dr. Byron Rourke in his "Non-Verbal Learning Disabilities, the Syndrome and the Model", this proposed personality disorder ("Inadequate-Immature Personality Disorder"....proposed by Quay in 1972) is probably just the behavioral manifestations of the NLD Syndrome. I explain more about my revelation here in one of my posts in this thread:

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




At any rate....I was told nothing about NLD and never even heard of it until after receiving the results of my first neuropsych eval at 23. Before then....nobody believed there was anything wrong with me at all in the neurological sense in spite of my constant insistence that there was. One psychologist who treated me for nine months believed I exhibited Narcisstic Personality Disorder though he did not administer any personality tests or any other psychometric measures. I have never been dx-ed with this pd on any of the neuropsych evaluations i've had. This psychologist also told me I had major depression, severe anxiety and that I exhibited "psychotic signs". The former two would be obvious to anyone who spends a significant amount of time with me. I have never been told I display "psychotic signs" on any of the neuropsych evals i've had however.


I was dx-ed with Borderline Personality Disorder on the first neuropsych eval I had at 23. To this day, I don't know why the psychologists who administered that eval felt this dx was warranted. Perhaps it was due to my performance on the MMPI or something, but I really don't believe I have ever exhibited many of the symptoms associated with BPD. I do not agree with the former poster who said this dx was likely made becuase of my flat affect. AFAIK.....flat affect is NOT one of the diagnostic criteria for BPD. On all the neuropsych evaluations i've had since, i've been dx-ed with either schizotypal pd or schizoid pd. I believe the latter fits me better than the former and i've believed that for quite some time now. The neuropsychologist who just evaluated me apparently agrees since he formerly dx-ed me with Schizoid PD on the recent eval I had in June.


Therefore....i've done far more than taking a few internet tests and reading the DSM. The psychologists (and everyone else for that matter) were unable to make a proper dx until I took the first neuropsych eval at 23. Even then, the personality disorder I was dx-ed with then didn't really suit me at all. The long and short of all this rigarmarole is that i've often been more accurate with my self-dx-es than the psychologists have been. It was quite an arduous and frustrating process trying to make people understand that all my problems had their root in something neurological rather than strictly psychological. Fortunately....the majority of psychologists now recognize that most, if not all, mental disorders are "underwritten" by SOME neurological abnormality even if said abnormality is limited to a chemical imbalance.


Actually.....i'm not really concerned with whether I have AS or not. The social deficits and behavioral abnormalites I exhibit really don't trouble me much. Rather, my main concerns involve my ultimate cognitive/intellectual potential (assuming there is such a thing as "ultimate" cognitive potential) and the memory problems I strongly believe I have which have never been objectively confirmed. As i've stated before, it is entirely possible for people to exhibit significant memory problems which elude detection on the conventional neuropsychological tests of memory. Even the neuropsycholgist who just evaluated me realizes this and yet he refused to recommend any further testing which may result in some clinical confirmation of these memory impairments. OVR ordered this recent neuropsych eval and they covered the costs of it. I cannot afford any further assessment out-of-pocket (and my insurance won't cover any) and therefore, none is available to me currently since this neuropsychologist refused to recommend any to OVR.

Therein lies the one problem with my lack of a formal AS/ASD diagnosis. There are many research studies I might be eligible for if I did have an official AS/ASD dx. The study at Pitt was the only one that was willing to consider me as a research participant without an official ASD diagnosis. Considering many of these studies utilize MRI's (and possibly other neuroimaging techniques) in their research, it is at least POSSIBLE I could discover the neurological origins of these memory impairments I believe I have. While the study at Pitt entails fMRI's....I believe there are structural images available as well. They probably wouldn't tell the participants anything about the structural images unless some gross abnormalities were detected in them. The memory problems I believe I have might be due to some gross neurological abnormalities, possibly in and/or around the Hippocampus for instance. Whether or not any kind of neuroimaging could tell me anything about these problems....no other diagnostic tools have even suggested I have ANY memory problems aside from fairly mild deficits in visual memory (which are common among those with NLD/AS). My working memory is fine according to both the memory tests i've had and my own self-observations.

I seem to have very severe, unusual, incongruous and perplexing impairments in semantic, procedural and episodic memory though. IMO...these deficits are likely the most debilitating of all problems and yet they've never been formally dx-ed. Thus....neuroimaging is probably one of the only viable options I have insofar as determining the neurological origin/s and maybe, the extent, of these problems. Furthermore...it would be nice to know what, if anything, I can do about these deficits provided I have any of the memory problems I suspect I do in the first place. I suppose it is possible I could be exaggerating, or even, wholly imagining these
problems but they seem very, very real to me. If I have exaggerated or imagined them, I certainly haven't done so deliberately. Even if I have exaggerated/imagined them....perception has now become reality and that has been the case for a very long time. Therefore....it would greatly beneficial to me if I could be given some clear indication as to whether these problems have any genuine neurological origin/s or not. Unfortunately...I can't afford any neuroimaging on my own and again, my insurance won't cover the costs of any.


I have also tried to get accepted into several research studies involving memory disorders. None of these would even consider me since they mostly study age-related memory disorders like Alzheimer's and other forms of Dementia. So without an official AS/ASD diagnosis, i'll be hard-pressed to find another study i'd be eligible for which would involve some neuroimaging.

I did not look at the "sink" very much while undergoing this exercise. I rarely do when i'm actually brushing my teeth. Rather....I look at the mirror and therefore, I was at least looking in the direction of the examiner during most of this exercise whether I was making eye contact with them or not. I only faced the direction of the "sink" (like I do in reality ofcourse) when it came time to "rinse'. The examiner also said something about using a cup to "rinse". I didn't want to do this since I never use a cup to rinse in reality. Rather, I merely bend down and rinse straight out of the faucet. She seemed to have no problem with letting me do this and it was one of the few times I was facing the "sink' during the exercise. Other than "brushing my teeth" in my usual circular fashion, I really don't know what other demonstrative gestures I used. I suppose I did make actual eye contact with her during this exercise, but i'm not always consciously aware of when i'm making eye contact and when i'm not.

I have never seen any of the studies you're referring to, but i'm pretty sure they're accurate nonetheless. I don't read many studies about the social deficits and behavioral abnormalities associated with Asperger's since my own issues in these regards don't concern me much. As I stated in my last post, I am far more concerned about my cognitive/intellectual abilities and the memory impairments. These memory issues may or may not be associated with NLD/AS. It is hard to believe that they are if indeed I actually have neurologically-based memory problems and haven't just undeliberately exaggerated or imagined them. The kind of memory problems i'm referring are not associated with NLD/AS as far I as know.

Therefore.....i'm only concerned with receiving an official AS diagnosis because I would be eligible for more ASD-related research studies. Aside from this study at Pitt, none of the research studies I contacted would even consider me without an official ASD diagnosis. Since neuroimagining may be the only way of determining the neurological origin/s and maybe, the extent, of the memory problems I believe I have, I wanted to get accepted into any brain-based study which included neuroimaging. I realize the neuroimaging studies involved in these research studies are very specific and probably wouldn't be able to determine anything about any memory impairments I may have. Nonetheless...I have no other access to neuroimaging aside from that which is often included in brain-based research studies. So I am forced to take what I can get and hope against hope that neuroimaging involved in one of these studies would pick up on any memory impairments I may have.

I am reasonably certain the researchers at Pitt are aware of the studies you're referring to. Again...I was told nothing about any actual scores on the ADOS, they just told me I was too "high-functioning"/mild to meet their diagnostic cut-offs based upon my eye contact and other non-verbal communication. I believe my social functioning is variable and it all depends on my mood, the particular environment i'm in at the time, the people i'm with, etc. My verbal communication is likely much better irrespective of the circumstances, but I often struggle in that respect as well. I often can't find the right words to express myself and i'm very reluctant to say anything unless i'm reasonably sure it's 100% accurate. In any case....i'm more comfortable around mental health professionals than I am among most other people. I doubt it would've done any good to inform the researchers of this beforehand. In retrospect, I probably should've have done so anyway, but I was pretty confident they'd accept me into the study. The researcher who administered the study even reinforced this confidence until my results on the ADOS and my subsequent rejection was revealed to me.

Horus,

Not to beat a dead horse here, but we touched a bit on this in a past private message.

These memory problems are possibly ameliorated with massive choline intake, (maybe also including nootropics).

I have a book on "smart drugs," and there are various situations(anecdotes) as severe head trauma , hypoxia, seizures, congenital, etc,etc.

For example: An engineer, had head trauma in an accident and suffered what seemed to be permanent memory loss ; had an I.Q. in the M.R. range, and took massive doses of choline for about a year, and little by little he recovered.

Many cases here to where it's worth a shot.^

I had short term memory problems(very bad absentmindedness), so I took "choline" for a year and it took that long to regain something that I thought was gone. These problems were bad enough for me to experiment with literally thousands of dollars in smart drugs( some of which I bought overseas) and literally years to find what would work. (This is a good indication of the severity).

These imaging studies may reveal "that", but then what? I think you'd do yourself a disservice if you didn't check more into this.

If you need anything feel free to pm me.

Yes....i'm pretty much aware of the fact that i'm an outlier of sorts. Nonetheless, they paid for all my travel expenses (and would've covered hotel expenses as well if I would've needed to stay in a hotel) and they seemed quite confident that I would be an eligible participant. Again....the only reason I feel let down is because I want to go as far as the science can take me in terms of learning about my brain. Particularily when it comes to my ultimate cognitive/intellectual capacity and the undiagosed memory problems I believe I have. I wanted to get into any brain-based research study which involves neuroimaging since I have no other access to neuroimaging. The reason a lack of ASD dx is problematic for me is because no other ASD-related research studies would even consider me without an official dx.

No other brain-based research study I contacted which included neuroimaging would accept me. I realize the neuroimaging involved in these studies is very targeted and specific. Thus....it is likely none of neuroimaging in any of these studies would tell me anything about the neurological origins of the memory problems I believe I have. Nevertheless...I have no other options in regards to any possibility I have of getting these memory impairments diagnosed if they indeed have a genuine neurological origin/s.

For the most part....i've had to be my neuropsychologist/neurologist for most of my life. I'm hardly qualified for the job, but this is what happens when you're poor and insurance won't pay for the specialists you need to see or any diagnostic procedures they may employ.

Yes it is worth a shot, but quite honestly, i'd be quite reluctant to take any pills which strangers send me in the mail. To be clear, you have given me no reason whatsoever to distrust you. Still....i'm simply unable to trust anyone 100% and I hope you don't take this personally. I just feel all this is within my rational self-interest considering what human beings have proven they're capable of. I am going to look into choline and nootropics a bit further. I really haven't bothered to do so yet because for one thing, I really don't know if I have any memory problems aside from ones with visual memory. As you probably know....visual memory deficits are fairly common in those with AS/NVLD, so there's nothing exceptional about me in that respect.

Furthermore....I know these substances are quite expensive and I wouldn't be able to afford them at this point in time. From everything I know of them (choline and certain nootropics at least), they come with few, if any, significant side effects. Thus...after a bit more research which, in part, may determine which one of the nootropics may be most effective for me, I would be perfectly willing to try choline and other nootropics. That is if I could obtain them inexpensively (or if I can afford them someday) and from comparatively trustworthy sources. Again....I sincerely hope you don't take offense to this. I just don't think it's wise to trust ANYONE you encounter on the internet no matter how nice and trustworthy they seem. I'd say this is especially true when your very life and health is at stake.

In short....I am very eager to try choline and/or any nootropic drugs which may be beneficial to me. Much like my limited access to neuroimaging, it once again boils down to a question of money as most things in this capitalist world do. The frustration I feel because of my lack of access to things which might change my life in a way that nothing else could is inexpressible. I've even been tempted to ask people on WP planet for a bit of financial assistance. My pride has prevented me from doing so and I doubt anyone would be willing/able to help me in this respect even before the whole recent Seanm debacle took place. My family has the enough money to easily pay for neuroimagining AND possibly, the nootropic substances which may benefit me. For one thing...they refuse to believe there's anything serious wrong with my memory/cognition no matter what I tell them. For another....they seem to be of that charming "get over it" mindset regardless of whether I have the problems I believe I have or not. They just think I should learn to live with these problems and be happy in spite of them. That's right....I should just learn to be happy as a low-paid, unskilled wage-slave when the rest of Americans are living the lives i've only dreamed of If they dealt with the things i've dealt with all my life, they might've commited suicide by now. I would too if I had the guts to put a gun to my head and pull the trigger.

If they were in my shoes for the past 40 years....I think that they too may recognize that this is a bit too much to ask. I would like the opportunity to improve my cognition/memory and i'll keep fighting to do so until my dying day. Why is it so horrible to believe that, aside from one's physical well-being, cognitive/intellectual capacity is the most important characteristic a human being can have and that one can never have enough brain power? People (even non-neurotypicals here on WP) constantly excoriate me for valuing all things intellectual/cognitive above all else. What else is more worthy of my attention? Should I worry about the incessant accumulation of superfluous material goods that many people in this society seem profoundly concerned with? Should I worry about how many sex partners I can attract or how many friends I can aquire? Even a gorilla can have alot of sex partners, so that proves absolutely nothing and of what real use is such a thing to a human being? Intelligence is the ultimate pathway to self-actualization, freedom and personal power as far as i'm concerned.

Like Marshall, I would have to disagree with you here. I don't know how any of my behavioral/personality charactersitics could be mistaken for BPD. I know AS wasn't in the DSM-IV 17 years ago, but schizoid/schizotypal personality disorders most (AFAIK....i'm not overly-familiar with any editions of the DSM aside from the current one) likely were. The only thing I can say in terms of why these psychologists felt I met the criteria for BPD is that it might have had something to do with my performance on particular MMPI they administered during that neuropsych eval. I know I was very depressed during the adminstration of this eval and probably quite anxious as well. Thus....my mood could've had an impact on my scores on the MMPI as I may not have been overly-motivated to choose the accurate answer on many of the MMPI questions. AFAIK....like Marshall already stated....flatness of affect has nothing to do with BPD, at least in most cases. It DOES have alot to do with both Schizoid and Schizotypal PD and i've been formally dx-ed with one or the other on every other neuropsych evaluation (five beyoind this first one I received the BPD dx on) i've had.


I really hold no brief whatsoever for psychologists who think they can make any personality disorder or ASD dx based upon one brief interview which doesn't even include any actual psychometric tests. I think it's easy enough to diagnose depression or anxiety in a fairly brief period of time, but it's not as easy to determine what is causing either one. For example....depression can be largely, if not entirely, situational/circumstantial rather than clinical and professionals should be responsible enough to allow enough time to rule out the former with some reasonable degree of professional confidence.

Yes...there are enough people on WP whose life stories seem similar to mine. At least more similar than anyone else i've encountered both on and off the internet. That's part of the reason I feel more at home here than anywhere else. I can't even remotely relate or identifiy with most people in this world and I have a difficult enough time doing so when it comes to many posters on wrongplanet. I freely admit i'm quite envious of many people here. Especially the younger folks who are in University studying the things i've always dreamed of studying and succeeding at them. If I had my druthers, i'd be spending much on my life on some leafy university campus in the northeast taking one class after another and spending inordinate time in the library. Or I would happy to be one of those eccentric professors who is a 50 year fixture on campus. I have never taken the AQ, but I think you can take it online right? Idk how reliable any online versions of it would be though. I believe i'm high-functioning when it comes to a very narrow range of abilities which are wholly unimportant and uninteresting to me. Still...I suppose it was these very abilities which prevented me from participating in this study. I am wondering what interests you're referring to that I post about over and over.

If you are talking about my interests in neuropsychology and my own brain....I really don't know if i'd be interested in any of it (though i've always found psychology and human behavior fascinating no matter what) if I didn't have neuropsychological problems of my own. For another thing....I post alot about these subjects because I believe I only understand the tip of the iceberg when it comes to my own neuropsychological issues. Especially where these undiagnosed memory impairments I believe I have are concerned. Thus....i'm looking for all the insight I can get on WP from people who seem to know as much, if not more, about these sort of things as any actual neuropsychologist/neurologist.

I rarely post about my interests in WW-II, coral reefs, rainforests and nature/travel in general though. I also have alot of interests in the occult/mysticism, The Lord of the Rings and music. I don't think I post too much about these things either. Please correct me if you feel i'm wrong here, but I just don't think i've posted anything substantial about all these subjects.

Thanks!! ! I was and still am very crestfallen over all this. Being crestfallen is the story of my life though and since I obviously don't have what it takes to commit suicide, I suppose I have no choice but to keep on trucking. All I can ever do is hope for, and work towards, the best while fully expecting the worst.


*shrugs*

I concur with this. I'm not sure where DeaconBlues got the idea that flat affect commonly has anything to do with BPD. I'm sure SOME PEOPLE with BPD exhibit a flat affect, but that likely has nothing to with BPD itself. Maybe my own intense anger had something to do with why I was dx-ed with BPD on this one neuropsych report 17 years ago. I probably EXTERNALLY EXPRESSED alot more anger when I was younger and perhaps I expressed a considerable amount of it during the evaluation in question. I have received no personality disorder dx-es since on any of my following neuropsych evals aside from Schizotypal on four and Schizoid on my most recent one.

Maybe you could look into dietary sources of choline?

Yes....they SEEMED supremely confident they received a bite in me. The ADOS was the final determining factor and I believe the researcher who administered it, at least, was quite surprised that I didn't meet their diagnostic cut-offs. To be clear....they didn't want me to participate in the control/without autism group. Rather....they felt i'd be a viable candidate for the with autism group in spite of the fact that they knew I did not have an official ASD dx from my very first contact with them. I also believe it is very subjective though i'm not certain about that since i'm unaware of the criteria they use. I would guess they are using Gillberg's criteria, but I really can't be sure of that. From what i've heard....Asperger's syndrome is being removed from the new DSM if the DSM-V is the one you're referring to. The neuroimaging is still in it's infancy as well when it comes diagnosing and assessing many brain-based conditions and ASD's are certainly no exception to this.

Still....neuroimaging does seem to be a bit better at picking up upon the neurological origin/s of many, if not all, memory impairments. That's really the crux of the matter for me here and this was the only opportunity I had at present to access any neuroimaging. Hence one of the main reasons i'm disappointed I was rejected. There would've been a practice fMRI the very first day of the study not long after I completed the ADOS.

Hmm.....in my shameful ignorance, I really don't know what dietary sources contain significant amounts of choline. Fish oil perhaps? I already take three Omega-3 tablets per day, but thus far i've noticed no cognitive benefits from this and I don't know if these contain choline (let alone the amount I may require) or not.

Would you be kind enough to enlighten me here?

I now hope i've adequately addressed everyone's post thus far as I feel an intense obligation to do so. If anyone has any further questions and/or comments, please feel free to post them and rest assured they will be most welcome by me indeed. It make take me time to respond to them since i'm still in a tug-of-war up here in Pittsburgh between dedicating "quality time" to my NT family (who I do owe alot to quite frankly) and my online time.


Again... I thank you all for your kind words and sound insights. I'd like to see this thread stick around for awhile, so by all means, keep on posting regardless of my personal participation in it.

pay pal is what I had in mind

Well.....this definitely sounds intriguing, but i'm certainly reluctant to ask anyone outside of my immediately family for anything. That in itself is an issue of shame rather than trust ofcourse. I feel very guilty accepting hand-outs of any sort even if said hand-outs could drastically change my life for the better. I currently have no way of repaying anyone for anything they may do for me. Nonetheless....i'm not saying I would be adamantly opposed to accepting whatever help you're willing to offer me. It's just something i'd want to sleep on.... so to speak. Anyway....pm if you wish with further details and we'll just take it from there.