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

Page 7 of 8 [ 115 posts ]  Go to page Previous  1 ... 4, 5, 6, 7, 8  Next

Mosaicofminds
Deinonychus
Deinonychus

User avatar

Joined: 17 Mar 2010
Age: 30
Gender: Female
Posts: 319
Location: USA

07 May 2010, 9:04 am

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.



Horus
Veteran
Veteran

User avatar

Joined: 14 Sep 2009
Age: 50
Gender: Male
Posts: 2,302
Location: A rock in the milky way

07 May 2010, 12:58 pm

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.



Horus
Veteran
Veteran

User avatar

Joined: 14 Sep 2009
Age: 50
Gender: Male
Posts: 2,302
Location: A rock in the milky way

07 May 2010, 4:40 pm

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.



petitesouris
Deinonychus
Deinonychus

User avatar

Joined: 13 Feb 2010
Age: 29
Gender: Female
Posts: 371

07 May 2010, 6:25 pm

anbuend wrote:
The two people with the highest vocabularies of anyone I've met, one of whom is thriving at college that he entered at the age of 13, both of them have such severe sensory and/or motor differences that their IQs tested at 10 in one case and 30 in another. Neither of them remotely pass for normal, despite both meeting certain definitions of giftedness.


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.



Horus
Veteran
Veteran

User avatar

Joined: 14 Sep 2009
Age: 50
Gender: Male
Posts: 2,302
Location: A rock in the milky way

07 May 2010, 6:42 pm

petitesouris wrote:
anbuend wrote:
The two people with the highest vocabularies of anyone I've met, one of whom is thriving at college that he entered at the age of 13, both of them have such severe sensory and/or motor differences that their IQs tested at 10 in one case and 30 in another. Neither of them remotely pass for normal, despite both meeting certain definitions of giftedness.


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.



Brittany2907
The ultimate storm is eternally on it's
The ultimate storm is eternally on it's

User avatar

Joined: 9 Jun 2007
Age: 28
Gender: Female
Posts: 4,920
Location: New Zealand

07 May 2010, 7:32 pm

* 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.


_________________
I = Vegan!
Animals = Friends.


anbuend
Veteran
Veteran

User avatar

Joined: 5 Jul 2004
Age: 39
Gender: Female
Posts: 5,482

07 May 2010, 8:35 pm

I don't think I meant "I wasn't gifted as a kid because I didn't meet the description as an adult". I think I was discussing Horus's definitions and going by those. Personally, if I think giftedness is a meaningful concept at all, then I see myself as outside it. Outside it not as in "not gifted", but as in "the idea of giftedness and lack thereof doesn't account for people like me if it accounts for anyone".

Sorry I haven't gotten to your other questions yet. I will. I'm just wiped out because I'm preparing for a medical procedure next week and have had so many appointments this week to prepare for it that my head feels like it's vibrating from overload.


_________________
"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams


Mosaicofminds
Deinonychus
Deinonychus

User avatar

Joined: 17 Mar 2010
Age: 30
Gender: Female
Posts: 319
Location: USA

08 May 2010, 9:14 am

@Horus: Congrats!! !

@Brittany: "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."
Interesting. I'm in a fairly similar situation and I always wonder, do people really notice the intelligence more, or is it just considered rude to comment on awkwardness?

@anbuend: Sorry for misunderstanding you, and don't worry about commenting right away. Good luck with the medical procedure!

@petitsouris: "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."
Was there any pattern to the results? For me, the closer the task was to pure perceptual, the worse I was. The more I could think it through, the better I did (so, the subtest with the weights and measures was a LOT easier than the block design one). That, and the fact that I improved significantly when given extra time, were probably the most meaningful things I learned from the IQ test. Too bad the real world doesn't give you extra time. :D



anbuend
Veteran
Veteran

User avatar

Joined: 5 Jul 2004
Age: 39
Gender: Female
Posts: 5,482

08 May 2010, 9:43 am

I think I was the opposite with performance to what you just described. (For me, performance was higher than verbal but within performance my scores ranged from slightly high to near the bottom.) My best score was Block Design, followed by Matrix Reasoning. My worst score was called Digit Symbol or Symbol Coding or something like that followed by the one where there was a picture and they ask what's missing.


_________________
"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams


Mosaicofminds
Deinonychus
Deinonychus

User avatar

Joined: 17 Mar 2010
Age: 30
Gender: Female
Posts: 319
Location: USA

09 May 2010, 1:57 pm

In case anyone was still interested in the questions that came up here, but didn't have time to answer:

* Did you receive a gifted label as well as an AS/HFA/ADHD/etc. label?
* If so, which did you receive first?
* Which do you identify with more?
* 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?

* How does giftedness relate to autism?
* Does giftedness always make autism less obvious?
* Does giftedness have anything to do with why some people cope better than others?
* How do you see 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?
* Where do special interests come from?
(Is that everything?)



Who_Am_I
Forum Moderator
Forum Moderator

User avatar

Joined: 27 Aug 2005
Age: 35
Gender: Female
Posts: 13,096
Location: My body is in Brisbane and my mind is in the gutter. :D

09 May 2010, 4:01 pm

I've answered some of the questions, but I'll answer them all at once now.

* Did you receive a gifted label as well as an AS/HFA/ADHD/etc. label?

It was suggested but never officially confirmed by IQ tests.


* If so, which did you receive first?

Gifted.


* Which do you identify with more?

Both equally.

* 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?

Even when they know about both, they get confused and/or angry at my uneven behaviour.

* How does giftedness relate to autism?

I don't know.

* Does giftedness always make autism less obvious?

I have used my intelligence to work a lot of things out, but I slip up all the time. Also, my AS is obvious to those who know what to look for.

* Does giftedness have anything to do with why some people cope better than others?

It probably plays a factor.


* How do you see 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?


Different ways of being gifted. Also, at the bottom, gifted children are children like any other children. They have a lot of expectations placed on them because of their giftedness, and people forget that they need the same things that other children do.


* Where do special interests come from?

Things being awesome. :P


_________________
Music Theory 101: Cadences.
Authentic cadence: V-I
Plagal cadence: IV-I
Deceptive cadence: V- ANYTHING BUT I ! !! !
Beethoven cadence: V-I-V-I-V-V-V-I-I-I-I-I-I-I-I-I-I-I
-I-I-I-I-I-I-I-I! I! I! I I I


Mosaicofminds
Deinonychus
Deinonychus

User avatar

Joined: 17 Mar 2010
Age: 30
Gender: Female
Posts: 319
Location: USA

09 May 2010, 4:31 pm

"At the bottom, gifted children are children like any other children. They have a lot of expectations placed on them because of their giftedness, and people forget that they need the same things that other children do."
Hmm...yes and no... My major problem with this is, if you replace the word "gifted" with the word "AS" or "autism" or "ADHD," would you still say that's true? 8O

we all have the same emotions, we all need food and water and a roof over our heads and acceptance from others and something to keep our minds occupied...I don't think I've met many people who feel like their brains are shutting off and it's actually painful when they're bored and not learning something, though. Which, to me, is the main justification for gifted programs. ::shrug::

"Where do special interests come from? Things being awesome." LOL! So true.



Zonder
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Age: 55
Gender: Male
Posts: 1,241
Location: Sitting on my sofa.

09 May 2010, 5:08 pm

My perspective is a little different as I didn't know I was "gifted" until I was in my 40s.

* Did you receive a gifted label as well as an AS/HFA/ADHD/etc. label?
No labels at all except for "lazy," "not applying yourself," and "you could do anything if you wanted to."

* If so, which did you receive first?
Gifted first (as I said, in my 40s), and subsequent research indicated that I'm somewhere on the autism spectrum and it appears that I have an auditory processing difference.

* Which do you identify with more?
Identify a bit more with giftedness because of my abilities to research and focus on things for long periods of time. However, sometimes social difficulties and anxiety impact my thinking more than my abilities.

* 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 think others often see me as smart and aloof. They are probably also confused by me because because I appear to be highly capable, but I really struggle with socializing and struggled with a number of attention and coordination aspects of my former job.

* How does giftedness relate to autism?
The two can be very hard to "tease out." There seems to be quite a bit of overlap between giftedness and the autism spectrum.

* Does giftedness always make autism less obvious?
High intellectual capacity can allow an individual to compensate for some autism differences, however if the individual is overwhelmed by sensory issues or has significant communication deficits, intellectual capacity can have limited effect on appearing to be more neurotypical.

* Does giftedness have anything to do with why some people cope better than others?
It can help to develop coping strategies and compensation.

* How do you see 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?
I don't believe that there enough accurate and diverse measures of giftedness. The measurements currently used miss those who have significant high capacities and gifts. For myself, I sensed that I had some significant abilities, but they weren't adequately measured, and therefore for most of my life, my parents and I thought that I was average (and my parents were both school teachers - even they didn't really have a good sense of giftedness).

* Where do special interests come from?
I think that special interests come from a need to learn and excel, and at the same time focus on just a few things at a time to make them manageable. I've had basically the same interest since kindergarten, and I was able to make that interest my career.

Z



Mosaicofminds
Deinonychus
Deinonychus

User avatar

Joined: 17 Mar 2010
Age: 30
Gender: Female
Posts: 319
Location: USA

09 May 2010, 5:39 pm

"No labels at all except for "lazy," "not applying yourself," and "you could do anything if you wanted to.""
OUCH. Especially that last one.

I haven't heard of someone being diagnosed gifted as an adult...how did it work, for you?

"The two can be very hard to "tease out." There seems to be quite a bit of overlap between giftedness and the autism spectrum."
Yeah. If you have more thoughts about this, I'd love to hear 'em. :)

"I've had basically the same interest since kindergarten, and I was able to make that interest my career."
Wow, very cool! What was your interest, and how were you able to make a career out of it? Not everyone is able to figure out how!



Zonder
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Age: 55
Gender: Male
Posts: 1,241
Location: Sitting on my sofa.

09 May 2010, 8:19 pm

Thanks for the questions, Mosaicofminds! I'll try to answer them.

Mosaicofminds wrote:
I haven't heard of someone being diagnosed gifted as an adult...how did it work, for you?


About five years ago I took an on-line IQ test that said I had the IQ level of Bill Gates. I didn't believe it because my grades were often really spotty in school. I asked my mom if she ever thought I was gifted and she said, "Noooo, your dad and I thought you were average." So I scheduled and paid for professional educational and intelligence testing. My performance IQ was the highest and verbal was 18 points lower - more than one standard deviation. My highest individual test scores were for block design and picture arrangement (at 99%) and lowest were arithmetic and letter-number sequencing (at 49%). That's a difference of 50 points - greater than three standard deviations. I was also lower in working memory capacity and processing speed. Because all of my scores were average or above, they said I didn't have a diagnosable learning disability. Since then I've done more research and had more input and I appear to fit the criteria of twice-exceptional - gifted with either mild autism spectrum disorder or other learning difficulty.

Mosaicofminds wrote:
"The two can be very hard to "tease out." There seems to be quite a bit of overlap between giftedness and the autism spectrum."
Yeah. If you have more thoughts about this, I'd love to hear 'em. :)

There are many similarities that others have mentioned. The difference seems to be qualitative. For instance, are social difficulties the result of having an inability to make connections with those one's age, or that there is too much intellectual disparity and the gifted student just can't relate to others her/his age. I do believe, however, that the differences are not at all clear-cut, and that some "neurotypical gifted" could benefit from the same assistance as "twice-exceptional gifted" students on the autism spectrum.

Mosaicofminds wrote:
What was your interest, and how were you able to make a career out of it? Not everyone is able to figure out how!


History and objects. I started collecting historic things in kindergarten and became a museum curator when I was 30, after graduate school. I've pretty much always stuck to learning about things that are related to my interest and have developed quite a database of information in my brain. I'm a real history geek.

A paper I wrote on discovering my own giftedness and learning differences was recently published. It is the first article in the journal found here.

Z