battle of the labels: gifted and AS/HFA/ADHD/NVLD/etc.

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From my own experience growing up with encompassing special interests as well as some inefficiency comprehending things (due to weak auditory processing or whatever), it seems to me that special interests are directly tied to neurological inefficiencies. If what is coming into one's neural system overwhelms the system, there is a natural tendency to try to reduce or eliminate the stimuli coming in. Narrowing one's interests and focusing exclusively on just a few things, it seems to me, could be directly related to the need to reduce input. Focusing and becoming proficient in one or two areas can also contribute to a sense of predictability and accomplishment. I remember, when I was young, take pride in the areas I focused on, even though I didn't do so well in other areas.

Z

@Horus: unfortunately, the professor at the main memory lab is only doing EEG studies right now.

Thanks, Zonder, I think I get what you're saying now. It makes a lot of sense that focusing would help reduce the input to something more manageable. I still think that in ADDITION to that, there's an emotional element, too, this almost magnetic need to know everything about something. Based on the feelings associated with it for me and what I've heard others say about their special interests, I do think that special interests might be a positive need as well as a way of compensating. But I could be wrong since my special interests started when I was very young and my memory could be off. It'd be interesting to hear more about how your special interests worked for you, and maybe more people can weigh in, too?

I have no idea, it really is a complete mystery to me, to the point where any mention of this topic draws out this example from me like some kind of knee jerk reaction. It totally mystifies me. I would be most curious to know what those who advocate and academically study the notion of not being able to think without words believe is going on when someone cannot think of the word/s to communicate a thought they are currently having. Surely they have personally experienced having a word on the "tip of their tongue" at some point, so how do they reconcile this with their view that people cannot think without words? It's just plain odd to me.

Mosaicofminds wrote:

Oh well....that was already a foregone conclusion in my mind in any case. Thanks anyway though. I'll still contact the Reberlab tomorrow just on the off chance they might be able to fit me in. If it's not an inconveniece for you, let me know what your adviser says about studying adults with learning disabilities. I'm just going to continue knocking on doors until one opens. I'd really love to participate in a suitable research study and have the results before summer's end. I want to go back to college and I want to start classes no later than January. If at all possible, it would obviously be nice to know more about these learning/memory problems I believe I have before then. I STILL have not received the consent form from the autism research study at the University of Pittsburgh either.

The director told me she would send me another one after the first one she supposedly sent weeks ago never arrived. She told me this last Friday and I KNOW she has my correct address now. She said she was mailing it out on Friday and i'm surprised it's not here by now. I hope i'm not getting some kind of "run-around" from these people. After all, if i'm simply not eligible for the study, I can't imagine they'd be reluctant to tell me that. Still...there's something quite odd about the first consent form mysteriously failing to arrive and the second one taking longer than it should.

Also....my case worker at OVR is sending me to have yet another neuropsychological evaluation because OVR requires one that is less than three years old. This will be the sixth full neuropsych eval i've had in my life. While I doubt it will tell me much, if anything, more than the other five already have, i'm glad she's sending me for one anyway. I feel I have alot more insight and information then I did when I had my last eval three years ago. Therefore....I can go into this eval "armed to teeth" so to speak. I'll try to convince the psychologist administering the eval that I need an MRI. If he/she recommends one, my case worker told me OVR MIGHT be willing to cover the costs of it. So this upcoming neuropsych eval is just a means to a potential end as far as i'm concerned. Yet another door i'll be knocking on in the hopes of getting some neuroimaging done already.

i keep puzzling about this. it's very plain to me that words aren't necessary. do these researchers think babies don't think? animals?

do some people think without pictures?

I am going to go somewhat out on a limb here and speculate that many probably do think that non-human animals do not think. It would not surprise me to learn that "they" (whoever "they" are) do not expect babies to think either.

I do not know if I think with pictures. I feel as though I do not, but when I go to describe my thinking the words all seem to be visual (image/model/impression for instance) so I suspect I do think with pictures a little but they are vague and fleeting, and more impressionistic than actually illustrative (if that makes any sense).

i must be unusually right-brained for a suspected aspie. my nephew is similar, but i don't read much of this sort of thing on the board.

almost no words for me, without photographic images first (which doesn't mean, unfortunately, that i have a photographic memory )

i've steered this off-topic though, so i'll stop there ..

@ Horus: Hope the eval will help you get some imaging done.

I'd be happy to ask. However, you have a pretty tight time frame, which I didn't realize. It takes months to prepare a study and apply to the IRB (ethics board), and there's usually pilot testing after that to make sure the study design actually works--especially in a case like this with a new population.

"Still...there's something quite odd about the first consent form mysteriously failing to arrive and the second one taking longer than it should."
Some labs are very...disorganized. In some labs, the people who set up appointments with participants are undergraduate work-study students, and how well it works depends on how on the ball they are. It is odd, but I wouldn't immediately assume they're trying to cut you from the study--in my experience researchers are very up front (though polite) about when they can't use someone. Granted, they're dealing with people who are less desperate for answers, so they'd have no reason to feel guilty about it.
--
"do some people think without pictures?"
I normally do, unless I'm dreaming, reading, playing out some imagined scenario in my head, or obsessively replaying a recent memory to figure out what to do next. The images are very vague and insubstantial--my visual memory is terrible (it's been demonstrated in testing, too) and that probably interferes with my ability to deliberately imagine something vividly. My dreams are utterly lifelike and when I was little, I used to wonder whether something I thought I remembered was actually a dream (and vice versa). For the first 2 or 3 days after an important event, I can play it back like a movie. This is a godsend because I miss a LOT in real time! But yeah, lots of words without pictures, and zero pictures without words here.

"do these researchers think babies don't think? animals?"
Yes.

Sorry for spamming this thread, but I had some more ideas that I'd like to get your feedback on. Sorry for the length of this post; this subject just really fascinates me.

One of the most interesting questions that came up here was whether you have to be an early bloomer to be gifted, or conversely, whether being an early bloomer necessarily makes you gifted. For example, penseive was saying she couldn't possibly be gifted because she wasn't an achiever as a kid, and anbuend was saying she wasn't gifted as a kid because she didn't end up fitting the profile as an adult. Gifted programs, checklists, etc. do tend to make these assumptions, but I think giftedness may be more complicated than that, especially when learning disabilities are also involved.

Charles Darwin was an unremarkable kid, but he came up with an idea that changed the world. (Other people were thinking along similar lines at the time, but his was the most well thought out and the one that, deservedly, stuck). Thomas Edison, if he were a child in today's classrooms, would be diagnosed with ADHD, and perhaps conduct disorder. Albert Einstein had a language delay; IIRC he didn't learn to talk until he was 3. No one in their right mind would say these people weren't gifted. (Yes, I know the problems with retrospectively diagnosing famous people, and I don't think there's much validity to it--but I think it IS fair to say not every great adult mind was a precocious child).

At the same time, many child prodigies flame out and never do anything particularly unusual as adults. I don't think it's always because of learning disabilities either, or because people put a lot of pressure on them. As anbuend pointed out, prodigy and genius are very different things. A precocious child is remarkable because of the gap between his ability and his age, not because his ability is all that great. Being several years ahead on milestones is enough to be a prodigy. To be gifted as an adult, you need an altogether different mind. I've written about this subject at some length here (http://mosaicofminds.blogspot.com/2009/ ... art-2.html) and here (http://mosaicofminds.blogspot.com/2009/ ... art-1.html), if you're interested. /shameless plug

At the same time, there really are people like Gauss (the mathematician) and Mozart who transitioned from child prodigies to gifted adults, so the connection isn't entirely false. I just wonder if they're the exception that proves the rule? Your thoughts?

On yet another tangent: several of you mentioned feeling different from other gifted kids in your classes. How would you describe NT gifted kids? Do you see them as the "real" gifted ones, or yourself, or do you think there's just different ways of being gifted?

Mosaicofminds wrote:

I really wasn't expecting any new studies to materialize within my time frame, but i'd still consider participating in one some time after classes begin. In other words, i'm going to start classes in Jan no matter what. It would just be nice to know what i'm dealing with before that. I should've done this years ago, but I really wasn't considering returning to college until recently. And for whatever reason/s, the learning/memory problems i've always believed I have really weren't troubling me on an emotional level for the past ten years or so. So in this rather ironic sense, severe depression may have been a blessing when I was 30. "Depressive Realism" might
have compelled me to seek the answers i'm currently after and for all I know, I could've had a master's or even a doctorate by now. Contentment has the capacity to be a far worse enemy than despair.





Yes....but they weren't setting up an actual appointment for me here. She was merely sending the consent form that they send to every prospective participant. In no uncertain terms, she told me she sent the first (seemingly lost) form to my address and last Friday, she told me she would send out the second one that very day. Perhaps she didn't send it out on Friday for one reason or another. At any rate....i'll give it until Monday to arrive and if it doesn't, i'll call her again. I was thinking that maybe they didn't want to hurt my feelings because i'm desperate (though I tried not to sound desperate and I just described my situation in a very matter-of-fact way) and they somehow sensed my desperation. I also thought that maybe they just saw me as some hypochondriac with pseudoneurological/psychological symptoms who was looking for a free diagnosis. But if that were the case, why would they bother to call me back? What is likely my paranoia and Schizotypal-esque (after all...I WAS also Dx-ed with Schizotypal PD on four out of the five neuropsych evals i've had) suspicions aside, the first form probably got lost in the mail somehow and she probably just didn't get around to mailing the second one last Friday for some reason.

Anyway..i'll get to the bottom of all that sooner or later. In the meantime....I still have a few other research studies to contact at NINDS, the University of San Diego and elsewhere. I'll also try to contact your Reberlab tomorrow. I doubt any of these will accept me, but it never hurts to try. The fact that there's none in my local area is one problem. Some accept non-locals and some don't and many don't specify that on their websites.


Obviously the participant criteria is usually very strict and since I don't have Dx-ed memory disorder of any kind, that's another problem. But the participant criteria is often rather vague and a few studies claim they accept participants who merely THINK they have a memory problem. That was the case with the study at Temple. They provided no phone number to call, only an email address. I sent them an email, explained my situation in it and they never got back to me. The study at NINDS is an example of a rather vague set of participant criteria IMO and here it is:

Types of Participants Needed:


"Scientists at the National Institute of Neurological Disorders and Stroke (NINDS) studying neurobehavior are seeking patients with severe isolated memory disorders due to anoxia, encephalitis, stroke, and other neurological or behavioral disorders. Amnesia patients who are otherwise intellectually unimpaired are especially needed.
Patients should be 18 to 65 years old and without immune, respiratory, renal, hepatic, or gastrointestinal disease. Exceptions to this age range may be made given extraordinary clinical presentation. Only patients residing in the United States are eligible to participate in these studies.

The studies will be conducted at the National Institutes of Health (NIH) Clinical Center in Bethesda, MD, and will include neuropsychological testing, neuroimaging, and related evaluations. All study-related expenses will be paid by the NIH".


The bolded part is rather subjective and could mean just about anything from ADHD to Zeusophobia!! ! But unless i'm totally moronic or something... a diagnosed learning disability, personality disorder and mood disorder/s would fit into the bolded criteria somewhere. That said...I really don't feel like an idiot for calling to inquire.

Well, the same people who make the appointments are the ones who sent you the consent form, so I think my attempt at an explanation still works. And would explain why the first one would get lost in the mail and the second wouldn't be sent out right away. And you're right--if they really didn't want you in the study, they wouldn't have bothered to call you back.

"The bolded part is rather subjective and could mean just about anything from ADHD to Zeusophobia!! ! But unless i'm totally moronic or something... a diagnosed learning disability, personality disorder and mood disorder/s would fit into the bolded criteria somewhere. That said...I really don't feel like an idiot for calling to inquire."
You're right, that's totally vague, and they OUGHT to specify. So you definitely shouldn't feel like an idiot. Some of these sites are terrible--as you've probably noticed, some don't even list the studies currently being done!

In any case, I hope one of the studies you mentioned works out.

Mosaicofminds~


I am basically out of luck insofar as all the research studies i've contacted thus far and I know of no others at the moment which I might even be potentially eligible for.


I contacted the Reberlab at your university and they told me they are not seeking participants at this time. They took my name/number and said they would contact me should they need any participants in the future.

The study at NINDS is mostly accepting those with officially diagnosed frontal temporal lobe dementia. In rare exceptions, they also accept individuals with other neurological disorders, but you MUST have a formal Dx from a NEUROLOGIST before they will even take you into consideration. The person I spoke with there told me i'd need a Dx from a board-certified neurologist AND MRI film as well as a whole host of other documentation.


The results of my neuropsychological tests are all I have and that's obviously not even close to enough.

It would've been nice if this was made clear on their website. Again, according to their website, those with "other neurological and behavioral" disorders may be eligible to participate. This sort of vague and inaccurate misinformation merely serves to waste everybody's time, including their own. The "neurological" part isn't that vague or inaccurate and i'm sure most people with defacto neurological disorders have a
formal Dx from a neurologist. But i'd say most people with a behavioral disorder Dx alone have never set foot in a neurologist's office.


At any rate...my only potential options at this point are with the psychologist (who may or may not recommend neuroimaging which OVR may or may not cover the costs of) OVR is supposed to send me to for another neuropsych evaluation and with the autism research study at Pitt. I still haven't even received the consent form from the Pitt study and i'll call them back Monday if it hasn't arrived by Saturday.

As i'm sure you can imagine....this is all very frustrating for me. The root cause of all this evil, like just about everything else in this society, is ofcourse, money (or lack thereof more accurately). In a society where everything has been commodified except for the air we breathe, you get the medical care, justice, etc...you can afford. This would be a laughably simple matter if I had the money for an MRI or if my insurance would cover one.

If this capitalist system is truly the best we can do as a species, then misanthropy is entirely justified IMO.

None of this will stop me from looking for other options though. My concerns about my memory and cognition in general are not driven by mere curiosity alone.


It would be nice to know what i'm ultimately dealing with here in those regards before I start school. Wasting my own time/money (not to mention taxpayer dollars in the form of Pell grants, whatever funding OVR is able to provide, etc...) on an endeavor I have no hopes of succeeding at is something anyone should wish to avoid.

Mosaicofminds~

*Update*

I received the consent form in the mail today. Some time after they receive the completed form from me one of the staff members will contact me for the 30 minute
phone interview.

The studies adults are eligible for entail three seperate projects:


"Project I: Ages 5-45

This research project is studying how autism impacts an individual's ability to process cognitive information. More specifically, we are investigating how individuals with high functioning autism learn about the world, including their knowledge of objects, catergories and people.

Project II: Ages 5-45

This research project is studying how the brain processes emotions. We use functional magnetic resonance imaging (fMRI) to take pictures of the brain while the participant is thinking. We use an eye-tracking device to better understand how people perceive, understand, experience, and express emotions. In addition, we want to find out how well people are able to use emotion to make decisions and social judgments.


Project III: Ages 16-45

This research project is studying the brain structure and function in autism through the use of functional magnetic resonance imaging (fMRI). Participants are asked to do activities such as look at pictures and read short stories while in the MRI machine"


Hopefully, i'll be able to participate in all three projects. Also...an ASOS/ADI-R test, an IQ test (i'm assuming WISC/WAIS....but considering the research participants, they may also include a Raven's Progressive Matrices) and other unspecified tests of sensory motor tasks, visual-spatial reasoning, etc....are included in the study for both children and adults. Family history interviews and genetic analysis are also included.

While I doubt the particular fMRI studies they utilize could tell me anything about the memory impairments I believe have, I still think my participation in this study would be worthwhile. If I tell them about the possible memory problems (and discuss the academic literature which might at least validate the POSSIBILITY of such problems in persons who haven't been formally Dx-ed with significant memory impairments) perhaps they'll at least take this into consideration before performing the MRI's and other tests. Also....i'd like to see if they have any insight into the possibility of the NVLD syndrome and/or Rourke's revised and expanded white matter model being the cause of severe memory problems in some cases.

I have several other hurdles to cross before being officially accepted into this study. But at least the first hurdle of receiving the consent form has been crossed

In spite of what the fMRI's will or will not ultimately tell me about my memory, this seems like a pretty comprehensive study and i'd be glad to participate no matter what. Since much of my immediate family lives in Pittsburgh, travel expenses and lodging would be no issue anyway.

this really resonates with me. i used to have such visual and auditory problems that i could not even take a test when i was first tested. with really long time extensions my iq was 101.

now it is ten points away from the gifted range. i really wish i was gifted. my verbal iq shot up, but my performance iq stayed the same and it is still really uneven. i think the highest performance score i ever received was actually off the charts and the lowest performance score i ever got was as abysmal as it gets.

None of this is surprising when it comes to IQ tests...especially for those with an ASD or those who exhibit alot of "scatter" for some other reason. My verbal IQ was squarely average on the first IQ test I took. Then it increased to 125 on the next one and 127 on the third. Then it decreased to 119 on the fourth one and dramatically increased to 155 on the last one I took. My PIQ has tested as low as 82 on the first test I had to 111 on the most recent one. That's one point away from a two standard deviation increase. IQ tests are truly worthless...especially for non-neurotypicals.

* Did you receive a gifted label as well as an AS/HFA/ADHD/etc. label? Yes.
* If so, which did you receive first? I received them both at the same time.
* Which do you identify with more? Gifted. I feel like my AS traits have lessened since I was diagnosed and when I go to the social groups, everyone seems to have it more severely than me.
* How do you feel other people see you? Do they judge you more on the gifted or more on the disability, or do they know about neither and get confused and angry at your uneven behavior? I don't tell people I'm gifted or that I have AS. However people often comment on my intelligence rather than my social differences so I presume that they judge me more on the former.