The Autism research study at Pitt rejected me

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My eligibility as a study participant was finally determined on Monday. I arrived here in Pittsburgh last Weds and my studies were tentatively scheduled for this week. I sent them copies of five out of the six full neuropsychological evaluations i've had in my life. I gave them a copy of the sixth neuropsych eval I took back in June. I completed a phone screening interview with them several months ago. My mother completed the ADI-R (Autism Diagnostic Interview, Revised) with them back in June while she was up here (we were both born/raised in Pittsburgh) visiting our family. In spite of all of this, my eligibility as a research participant could not be determined until I actually arrived at the study and took the ADOS (Autism Diagnostic Observational Schedule) with them.


For those of you who may not know, the ADOS is considered the "gold standard" for assessing and diagnosing autism spectrum disorders. To save myself the trouble of explaining the details of this test, here's the Wiki link for anyone interested in learning more about it:

http://en.wikipedia.org/wiki/Autism_dia ... l_schedule



At any rate, I did not meet their diagnostic cut-offs largely, if not entirely, based upon my performance on the ADOS. They have been fully aware of the fact that I have never received an official ASD diagnosis since my very first contact with them. Nonetheless,they believed I may be a viable study participant based on the neuropsych evals I sent them, the results of the ADI-R and everything else I shared with them up until actually arriving at the study to undergo the ADOS. They covered all the costs of my trip to Pittsburgh (as well as my mother's even though nothing else was required from her on this visit) and they were willing to pay for hotel costs during the duration of the study (which would've been 3 1/2 days had I met their diagnostic cut-offs). I didn't need to stay in a hotel though since I most of my immediate family lives in the Pittsburgh area.



All the psychologists who administered the six neuropsych evaluations i've taken in my life believed I fit the characteristics of NLD/NVLD. This was clearly indicated on all the copies of the reports I sent to the study. Since NLD/NVLD is not a formal mental disorder, i've been officially dx-ed with LD-NOS or Mathematics Disorder on all but one of these six neuropsych evals. I received no LD/Mathematics Disorder dx at all on the neuropsych eval I had in 2006. I believe this was because the neuropsychologist who administered this test felt my IQ scores on the WAIS he administered were too high (Verbal IQ=155/Performance IQ=111/Full Scale IQ=143) to warrant an LD/MD dx in spite of the 44 point discrepancy between my VIQ and PIQ.


I have also received a dx of Schizotypal personality disorder (sometimes with avoidant features) on four of these neuropsych evals and Schizoid personality disorder (with features of schizotypal and avoidant pd) on the most recent neuropsych eval I had back in June. For reasons I still don't fully understand, I received a dx of Borderline Personality Disorder (i'm male, btw) on the first neuropsych eval I took at 23 (i'm 40 now). I have also received various other psychiatric dx-es like depression, dysthymic disorder, anxiety, obsessive-compulsive traits, etc....on all these neuropsych evals.

According to the psychologists who've tested me, the reason they did not Dx me with AS another is because I do not exhibit a repetative and stereotyped pattern of behaviors, interests and routines. Therefore, I have never received an official AS/ASD dx in spite of the NLD/NVLD characteristics I display and the qualitative impairments in social interaction I exhibit which are commonly associated with AS. I disagree with the conclusion of my psychologists in regards to my alledged lack of repetative/stereotyped pattern of behaviors/interests/routines, but that's another story.

Based upon what they told me at the study on the other hand, I did not meet their diagnostic cut-offs because I displayed good eye contact and my deficits in non-verbal communication in general were too mild for what they were looking for. AFAIK, this was all determined during the ADOS and thus, i'm too "high functioning" to participate in their study. This DOES NOT mean i'm not on the spectrum btw......it simply means that I do not meet their specific criteria. I had a feeling they were going to reject me anyway and I was informed of this possibility a long time ago. Beyond the ADOS, I was also required to take an abbreviated version of the WAIS-IV IQ test. I believe this test is known as the WASI or something like that. If they were simply using the subtests included on the GAI (General Ability Index) of the WAIS-IV, they did not include Matrix Reasoning subtest for whatever reason.


They could not use the results of all the former WAIS tests i've taken as most of these tests were taken four years ago or more and they could not obtain the test protocols from the most recent WAIS I had back in June. Therefore...I needed to take this abbreviated version of WAIS-IV after undergoing the ADOS. I correctly predicted that the block design and visual puzzles subtests (from the Performance section of WAIS-IV) would be included in this abbreviated version and the examiner seemed somewhat impressed that I would know such a thing. AFAIK, the Block Design and Visual Puzzles subtests have the highest reliability coefficient of all the performance subtests on WAIS-IV. The Verbal subtests included Vocabulary and Similarities and I believe these have the highest reliability coefficient of all the Verbal subtests.

I think I performed exceptionally poorly on the block design test this time and I always score in the low average range on it anyway. OTOH....I think I may have peformed better on the Visual Puzzles subtest than I did the last time I took it back in June. They will send me my results in a few weeks, so i'll know for certain when I receive them. Beyond this and a few grip strength tests and tests of handedness.... they took my height/weight and head circumference and that was all. Then one of the doctors (a neuropsychologist i'm assuming) came in and informed me that I did not meet their diagnostic cut-offs and all further testing and studies would be cancelled.


I have alot to say about these functioning labels as I believe they are highly misleading, abitrary and subjective. Even my family who is largely ignorant of autism responded with, "well that's great....you're high-functioning!! !" after the study rejected me because i'm too "high functioning" for what they are looking for in a research participant. This is the crux of the matter and I had a difficult time making my family understand this. That is....I am simply too "high functioning" FOR WHAT THE AUTISM RESEARCH STUDY AT THE UNIVERSITY OF PITTSBURGH WAS LOOKING FOR IN A RESEARCH PARTICIPANT.


I am forty years-old and i've never held anything aside menial, unskilled, low-paying jobs and I haven't been employed for over a year now. I have always been at least partially financially dependent on my family and i've lived with them for all but ten years of my adult life. I only have an AA degree in liberal arts and received this with course substitutions for mathematics. I have enormous problems with any math beyond basic addition, subtraction, multiplication and division. I really don't know if I could even pass introductory algebra since I took it twice in college and dropped it both times before opting for the course substitutions I was eligible for as a person with a documented LD which manifests itself as difficulties with higher math in the academic milieu. Furthermore.....my visual-spatial/mechanical reasoning is abysmal, i'm good for screwing in lightbulbs and that's about it. I have problems with processing speed and executive functioning. The neuropsychologists who've tested me believe I likely have some frontal lobe deficits.

I also have plenty of deficits in social interaction. I do not smile alot regardless of whether I maintain good eye contact or not. I have very few friends who I don't speak too much and I was bullied mercilessly in K-12 and beyond. In spite of my psychologist's claims to the contrary, I do believe I exhibit repetative and stereotyped behaviors, routines and interests which I don't feel like describing at the moment. I have dealt with severe depression, anxiety and other emotional problems for most of my life. I have problems with psychomotor skills and I can barely write or sign my name legibly. These problems have also affected my abilities to play guitar (something i've been TRYING to master on/off for 27 years now) and my skills at other bodily-kinesthetic tasks. I have some deficits in visual memory (which are supposedly fairly mild) which have been objectively confirmed and which are common for individuals with AS and NLD/NVLD.


I also believe I have some severe and highly unusual (such problems are highly unusual for NT's and people with AS/NVLD/ASD as well) problems with semantic, procedural and episodic memory which HAVE NOT been objectively confirmed. According to all the neuropsychological memory tests i've taken, all aspects of my memory (aside from visual memory and again deficits in visual memory are common for people with AS/NVLD) are normal. In fact.....many of the memory tests i've taken indicate that my memory outside of visual memory is above-average or superior. Nonetheless....it IS entirely possible for people to have memory problems (particularily when it comes to long-term memory) which simply can't be detected by the standard neuropsychological tests of memory. This notion was confirmed by the neuropsychologist I recently saw and suggested by this article from the Oxford Journal of Neuropsychology:

http://brain.oxfordjournals.org/content/123/3/472.full


Since I have no objective confirmation of these memory problems i'm referring to, I suppose it's possible I have either exaggerated or imagined them, though certainly not deliberately or consciously. Nonetheless...they seem very, very real to me and I believe they are likely the most debilitating of all the problems I face. In any case, i've discussed these memory problems in much more detail many times on WrongPlanet and there is no need to do so again now.

I was hoping that maybe, JUST MAYBE, I might find out more about them from the fMRI scans which were included in this study. That is obviously out of the question since they sent me packing not long after administering the ADOS test. I cannot afford any neuroimaging scans on my own and my insurance surely will not cover the costs of any. I have tried to find other research studies I might be eligible for, but this one at Pitt was the only one which would even consider me as a participant. I've tried to find some memory disorder research studies I could take part in as well, but none of these would consider me either. Most of them are studying age-related memory disorders like Alzheimer's and other types of dementia.

Herein lies the problem with being a "high-functioning" outlier who is, for all intents and purposes, on the spectrum. I'm too "high-functioning" in all the areas that really don't matter much to me and too "low-functioning" in all the ones that do. I am living with a neurological mystery which nobody seems to have any better answers for than I do. All this in spite of my IQ scores which have been high average or better (full scale) on five out of the seven professionally-administered IQ tests i've taken in my life. The discrepancy I exhibit between my VIQ/PIQ (in favor of VIQ) is exceedingly common for those with AS/NVLD. My VIQ scores are usually in the superior-very superior ranges and my PIQ scores have always been in the borderline to high average ranges. So i'm basically back at square one and I know little more about my brain beyond what the neuropsychologists (and many here on WP have offered some good theories as well) have told me based upon all their conventional tests. My own self-Dx and research has been essentially just as useful (and even more so in some respects) as that which has been determined by all the psychologists/neuropsychologists who've tested me.


Anyway....I thought i'd tell everyone what happened at this autism research study since i've been discussing my possible participation in it on WP now for several months. I am quite upset and disappointed by the whole affair. I really was confident they'd take me on as a research participant and I was looking forward to the MRI studies, genetic testing and all the other things which were supposed to take place during the study. The more insight I can receive into my brain....the better and now i'm once again facing nothing but empty night. Also....I hope everyone can now understand the gross limitations of the functioning labels based upon what i've written here.

I will respond to any replies ASAP. I will be here in Pittsburgh until Weds Sept 29th and then I return to my home in South Florida. I need to dedicate a considerable amount of time to my family while i'm here...so I may not be able to respond to anyone right away.


I send my love to you all. I truly consider many of you on WP to be the most intelligent, informed and kindest people i've ever encountered. In spite of whatever faults it may have, WrongPlanet is an absolute gem among the dross of the internet and humanity in general.

I'm sorry to hear it didn't go as you had hoped.

How old were the other participants? Observable behavior is a bad measure for adults.

The memory thing is odd. Care to give more information?

Love you too.

I'm really sorry to hear about this disappointment. I know this was important to you.

I am glad I did not apply for that study when you sent a link to me. We have almost mirror conditions and they would have probably would not taken me either.

I don't blame you for being disappointed by not being accepted by this research program. I've wondered about having my son try to get into this study, but have also wondered if he would be considered "too high-functioning". Like you, I've thought it might be beneficial to have the MRI information that the study would provide.

I am sorry to hear that they won't be able to include you in their research project.

I would be interested in hearing what their version of the ADOS was: how did they administer it and what sorts of "exercises" did they do as part of the ADOS? I am interested in this because my daughter (age 7) had been given the ADOS twice, once she didn't make the cutoff for ASD (when she was 4) and another when she was 7 where she did make the cutoff. The ADOS they administered to her on both occasions was very subjective. On the first she overwhelmingly did not qualify and on the second she did make the cutoff so I am wondering if the administrator of the tests, time of day, patient's state of mind, etc could influence the results of the ADOS. I don't find it a very reliable test given the subjective nature. However, I feel this way about a lot of the tests given as part of a neuropsych eval.

I'm sorry to hear about this. I know how important it was for you.

I am very sorry that you didn't get accepted in the study. I've read about their studies, and I think that their IQ cut-off (FSIQ: 125) is poor for a study of this nature. Yes, it's hard to find controls with IQs above 125, but they should consider that many people with Asperger's have high IQs.
-OddDuckNash99-

You are too much of a confounder that could skew their results too far. Most of these studies use small sample sizes and rely on statistics with large error bars that could easily be ruled insignificant. They end up taking people that match their study criteria and rejecting anything out of character. As you said, these studies cost a lot and they have to account for all the expenditures. Sorry, if you feel let down.


I am a lot like you it sounds like. Fairly intelligent with a sketchy job history that doesn't show the effort I have put out. I am more NVLD than AS in my profile history. It kind of sucks when you turn to professionals for not only help but for some sort of guidance and direction. You end up feeling worse than if you didn't make the effort. Try not to become too discouraged; it is just a waste of good time.

I can at least explain one of the implicit questions in your history. You say you were diagnosed with BPD when you were 23, which would have been 17 years ago. Asperger's Syndrome only made the DSM-IV sixteen years ago (and then required a bit of time to percolate into the psychological zeitgeist - some psychs even today don't seem to know anything about it). Therefore, your "flatness of affect", a common symptom of ASDs, would likely have been misinterpreted as a complete lack of emotion - one of the diagnostic criteria for BPD.

I got the same thing in '89, when I was in the Air Force and my CO sent me in for a psych workup (apparently, he felt my desire to simply serve out my term and not buck for sergeant meant there was something wrong with me). The psych interviewed me for about 20 minutes, then gave me a diagnosis. (Me being me, I promptly looked up the criteria for the diagnosis, realized he was so full of it that brown stuff was leaking out of his ears, and took my honorable discharge six months early. In retrospect, that may have been a tactical error...)

I am sorry, I read about how much you wanted to participate. You sound a bit like me, I have also only held menial jobs too, and have very uneven intelligence and poor focus..

I almost didnt qualify for the AS diagnosis, I got in by a whisker as my AQ was 32 and my developmental survey just qualified me too... I was honestly expecting PDD-NOS to be the result and I still feel like a bit of a fraud in some ways... but there are many of us on the edge like that...

It doesnt make me high functioning though. I have other neurological issues that are related to my mind being wired the way it is, and as a result I cant do the things I want to do...

I have broader special interests than most aspies. For years I didnt recognise them as special interests, I just thought I liked reading, and liked the topics I liked. Perhaps you are the same. I think you dont recognise you have the interests, I see you posting about the same topics over again and that is a sign.

Sorry to hear you didn't get to participate in the study.

Sorry to hear that, Horus. I know you had high hopes here.

It sounds as though they thought they had a bite, by your testing evals.; but overall other things didn't meet their criteria for the "control group."


Overall all this is way too subjective: depending on the criteria is used (Gillberg, DSM, ICD 10); there isn't a symmetrical way of evaluation across borders,i.e. some say using Gillberg's criteria is a better/closer match to Hans Asperger's account.

The new DSM isn't the panacea either.

Overall, access to objective science is found wanting here, i.e. imaging devices.

I want to thank you all for your kind and insightful replies. I will respond to all your questions and comments ASAP. I will be here in my hometown of Pittsburgh until Weds Sept 29th. I do need to dedicate a considerable amount of time to my family since I don't get to see them as often as i'd like. Therefore, I only have a limited amount of time to spare right now on the internet. My grandfather is 93 y/o and as expected for a human being his age, he is not exactly the picture of health. This may very well be the last time I lay eyes upon him in this life at least. He is too old and weak to travel Florida anymore to visit me like he used to. I can only make it up here so much to visit him (not to mention my aging father as well) and this whole situation is yet another pleasure cruise to add to the infinite number of ones i've taken in my life

Furthermore.....i'm having the always-delightful technical problems with my computer. I just spent over an hour crafting a long response to DandelionFireworks since i'm trying to respond to all of your posts in the order they were received. Much to my everlasting joy....my computer crashed in the midst of this reply and I simply don't have the energy to start another one now at 2:13am.


The frustration, anger and sorrow I feel at this moment simply cannot be expressed in words. If the anger and frustration could be weaponized, I swear in hell's court it would blow this whole miserable and meaningless universe into nothingness. Perhaps this song from Satyricon can express it better than I ever could:


[youtube]http://www.youtube.com/watch?v=aObwaAL5wKc&feature=related[/youtube]


Anyway....cathartic and apocalyptic black metal aside....I will respond to all of you ASAP. Please feel free to keep this thread alive until i'm able to do so. All the issues raised in this thread are worthy of much discussion IMO. I'm sure Treebeard of LOTR fame would agree that any issues worthy of any discussion at all take a long time to ponder and express. You folks on WP have treated me with more kindness and concern then anyone outside my immediate family ever has. So you can all rest easy in the fact that you will all be spared when my rage is finally weaponized and unleashed upon this otherwise unspeakable two-legged plague which has dirtied and degraded all that is noble, beautiful, gentle and worthwhile in this world for far too long now.