How disabling can NVLD *alone* be?

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"The nature of the deficits in children with NLD is hypothesized to be radically dependent upon the severity of white-matter involvement and the age at which the damage was sustained.Thus, for example, severe or widespread white-matter disturbance occurring very early in life would be expected to eventuate in deficiencies in virtually all skills and abilities. However, milder degrees and extents of dysfunction, such as may occur in later life, would be expected to eventuate in a milder impact on a child's neuropsychological abilities. In the case of linguistic skills, for example, once these functions have been reasonably well developed (e.g., by 5 years of age) they tend to be more impervious to white-matter disturbance. Another severity dimension of relevance in the psycholinguistic realm is the degree to which the verbal task is novel" (Rourke, 1989).


If the NVLD syndrome alone is truly the source of all my neuropsychological problems, then I must be one of the extreme cases Rourke is referring to here. I seem to exhibit deficiencies (and rather profound ones in many areas) in "virtually all skills and abilities". I have encountered few, if any, NLD-ers whose functioning is anything close to as poor as my own. The most perplexing thing of all is the results of the neuropsych evals i've had in my life. Here's the results in chronological order, from the earliest to the most recent:



1.) FSIQ-94
VIQ-104
PIQ-82


2.) FSIQ-112
VIQ-125
PIQ-94


3.) FSIQ-116
VIQ-127
PIQ-102


4.) FSIQ-112
VIQ-119
PIQ-100

5.) FSIQ-143
VIQ-155
PIQ-111



While my scores on the first one were pretty low, all the other tests do not seem to suggest my own NVLD *profile* is all THAT severe. I've encountered countless NLD-ers whose scores are no better than my own on the last four and many have obtained scores quite a bit lower. I have yet to encounter ANY NLD-ers whose FSIQ/VIQ/PIQ scores aren't SIGNIFICANTLY lower than my own whose functioning is anything close to as poor as my own. Needless to say...this doesn't make me feel very good about myself, to say the least. Does anyone know of any other NLD adults who have never managed to live independantly, complete college, hold a job, etc.....??? If so....do you know anything about the results of their own neuropsycholgical/IQ tests?




I have more questions about myself now then I did when I was first *diagnosed* with NLD. The incongruity between my abysmally low level of functioning and my neuropsych results is unbearable. The incongruity between my own level of functiong and that of my fellow NLD-ers who have not obtained scores significantly lower than my own is equally unbearable. If I can't have any hope....at least i'd like some clear answers for once.


I appear to be living proof that NVLD has the potential to be just as serious (in terms of it's overall impacts on one's life) as any ASD or even mild mental retardation. If not....then I have some other neuropsych problem which is far more serious then NLD. I really don't know what other conclusions I can come to at this point.

Can you elaborate on some specific things that you feel have caused you to not be able to live independently, finish college or hold a job?

I should also say that many NLD *experts* (like the late Sue Thompson) claim the "severity" of NLD is largely dependent on the size of the gap between VIQ-PIQ. While the gap between my own VIQ/PIQ scores has been as wide as 44 points (on the most recent test I took which, ironically enough, yielded the highest scores in FSIQ, VIQ and PIQ), I have encountered plenty of NLD-ers with even larger gaps. Again....I have yet to encounter ONE who functions as poorly as I do. The only exceptions appear to be NLD-ers with FSIQ scores <100. Maybe the results of my first test were the most accurate indicator of my neurocognitive abilities If so...how did I manage to score within the "very superior" range on the most recent one? I've heard of grossly underestimated IQ scores (common enough among those on the spec) but rarely, if ever, grossly overstimated ones. I'm also left-handed, which seems to be a rarity among NLD-ers.


My brain makes no f***ing sense at all!! !

Well....in one sense wigglyspider i'm glad you asked this question and in another...i'm not. Don't get me wrong, it's a perfectly legitimate question, but there's been SO many specific things, I hardly know where to begin. It's all pretty overwhelming and it would take me forever to elaborate on everything. So for now....here's some links to my other posts on WP. You will find SOME specific things in them and if you have any further questions, feel free to ask.


http://www.wrongplanet.net/postt107711.html


http://www.wrongplanet.net/postt107834.html


http://www.wrongplanet.net/postt109025.html


http://www.wrongplanet.net/postxf110557-0-30.html

Wiggly Spider,


I shared quite a bit about my memory problems (real or imagined....and I REALLY don't know how anyone can imagine a memory as severe as mine appears to be) in these posts and memory seems to be one of my most problematic areas.

In particular....my semantic and procedural memory seems very limited.

Nevertheless....NONE of these neuropsych tests indicate I have any serious problems with memory aside from those which are common among NLD-ers.

I'm gonna guess NVLD runs the gamut of severity just like autism does; but that if your NVLD gets to an extreme level, people might diagnose something else altogether, like PDD-NOS, because of the idea that NVLD is a "learning disability" along the lines of dyslexia and can't cause severe disability. (I personally think it's just another autism spectrum condition, since the variations of autism tend to easily encompass the definition of NVLD.)

There can be no doubt it runs the gamut of severity. All I can say is that with the exception of myself, most, if not all, the exceptionally severe cases seem to be restricted to those with lower IQ results. The case studies in Rourke's "Nonverbal Learning Disabilites, the syndrome and the model" are all children whose IQ scores (even the VIQ in many of the cases) are at least low average. Rourke has often been criticized because he seems too focused on the "worst-case scenarios". While I think even "gifted" NLD-ers deserve attention, I can't really fault Rourke for this personally. Many NLD-ers with normal IQ's or better have some significant struggles, but even those without early interventions usually fare relatively well eventually.

I'd say making it through college, living independantly, being able to hold a decent job and having some appreciable skills/talents/hobbies, etc....=faring relatively well.


I guess I have a hard time taking the social deficits and "adaptive skills" into account though. While those things are issues for me and they have been the cause of some distress, I can accept them.

It's all the other things i've already mentioned that I can't accept.

I'd be comparatively OK if I was a virtuso guitar player, computer genius and all-around brainiac (for one Aspie-elite stereotype ....and a bad one at that) living in my own place and working a job commensurate with my abilities/education.

Even if I had no friends, girlfriend and couldn't manage to cook for myself.

BTW Callista....I BELIEVE it was you who said (in some other thread) that if a person has taken several IQ tests in their life, the one which yields the highest scores tends to be the most accurate indicator of their cognitive potential. This seems to make perfect sense, but i'm wondering where you heard this and if it's the general consensus among psychometricians.

Unfortunately I haven't got any sources for it; it just seems logical to me, like this:

Take an IQ test as an adult with brain development mostly completed.

1. Unlike online IQ tests, real-life IQ tests don't have very many multiple choice questions, and the highest increase you could possibly expect from nothing but chance--being a very lucky test-taker--is not very significant.

2. You can easily be hindered by some non-IQ-related condition, like attention or language difficulty. It's much harder for your actual skills in the area of IQ to be enhanced by some temporary condition than it is for those skills to be hindered.

So, with variable test results, you can expect that the highest test result is the one that's closest to your theoretical capability, with the lower test results being due to various problems that keep you from properly accessing your skills.

For some people, skill levels actually vary day-to-day, and skills can be lost and gained; this would be the only situation I can think of (save atypical development--during childhood your IQ can go up and down as your development varies relative to the norm) that IQ would be truly variable, rather than tested as variable when during the lower measurements something was stopping you from showing what your abilities would be in an ideal situation. If you actually do lose skills on a regular basis (your record should show "regression", especially under extreme stress), then your IQ probably means very little, since your skill set isn't even constant to begin with. Autism of this sort is rare, though, usually diagnosed as childhood disintegrative disorder or, if the genetic test fits, Rett's.

It really depends. I have very poor visual-spatial skills, and I can't do arithmetic very well. I also have some social impairment as evidenced by my last job.

Most people would describe me as "high functioning," but even those of us who come off that way face a variety of challenges.

Just like ASDs, NVLD can be more or less severe. I'm a bit knackered, or I would articulate more, but I can barely string two sentences together right now.

This might sound funny, but first of all, I think you're lucky to have encountered so many other people with NLD. I've been diagnosed with NLD also and I've only met one other person with NLD in my life. That said, I've been on an NLD list-serv for awhile and people's levels of functioning seem to vary a lot. It seems like for most people there, their biggest problem is with visual processing, which is not my main problem at all. I'm actually good at a lot of the things NLDers are supposed to be bad at, like having a sense of direction and writing by hand. But my executive function is useless. I've also struggled with depression for a few years which makes me a lot more "disabled" than I might be otherwise. I don't think very many of us just have "NVLD alone".

How disabled I feel seems to depend not on scores (which you should probably take with a grain of salt) or my diagnosis, but my life circumstances. All throughout school, I appeared to be extremely high functioning, if not odd. I was good at school. But once I graduated from college, it was like my disability flared up and I could hardly accomplish anything. I can hold a job, but not a decent job that pays enough, which means I despair sometimes of ever living independently.

I'm sorry Pineapple I should've been more clear, I have never met (not that i'm aware at least) any other NLD-ers in person. I was just talking about all the NLD-ers i've run across online over the years and the stories i've read about in print. I have been NLD in-common for awhile myself, but I just lurk there from time to time. Everyone there seems alot higher functioning then I am. Also, I SEEM to have problems most other NLD-ers don't have, most notably with my semantic and procedural memory. Even when it comes to verbal material, I can't seem to remember much of what i've read no matter how many times I read it or how much the subject interests me. I have dealt with depression all of my life, at least most of my adult life. I have been on countless meds and not one of them ever did a thing for me.

Ack....I can't even say anything more right now....everything I say, think and feel just seems utterly idiotic and futile.

Well if it's any consolation, after seeing the guy who did my assessment, I'm offically considered 'moderately-severely cognitively disabled' because of my executive functioning and processing issues due to my NLD. My VIQ is 127; PIQ 99; and FIQ 115. I go to college and will graduate next year, have a job (but I'm considered weird/a walking encyclopedia), and CAN plan- but implementing plans are hard.

Actually, what you mention is one of my frustrations. My stepson has NVLD yet everyone here is higher functioning that he is, even you. His FIQ is 89 (don't have the VIQ and PIQ handy although I know the VIQ is the higher one and there is a big gap between the 2). He is hopeless at math and has lots of troubles. He has been Dx as 'math disabled'. His math score was labeled in the 'ret*d' range. That is what the report said. When I first had the guts, after one year, to post here, I thought I would meet lots of parents with similar kids but no, they are all higher functioning. All I can think is that he has another Dx that hasn't been found? He had another assessment for his IEP and we haven't received the results of that yet. And his dad is so frustrated, he is at a new school school this year, in 7th grade, and just struggling. His parents invested a small fortune in his college fund, he could go to whatever college he wanted to, they started it when he was born and he's just struggling to get through middle school at this point. I keep trying to be encouraging and motivating but it is just draining my husband. My stepson is very dependent, even at 13 years old, so his dad is just overwhelmed. His son freaks out if his dad goes to the store for 5 minutes. He has severe separation anxiety from his parents and very peculiar behaviors.

He is with us for one week and then to his mom's. They have joint custody. Every time he comes back to us, it is always the same. He goes to his room and then to his dad and says 'someone has been in his things, stole his things, messed with his things' etc. He goes through this complete paranoid state. I never go in his room and touch anything, no one does, but every week we go through this. Today my husband yelled at him when he came with his suspicions. I felt awful because I don't know why he does it, but I am also not sure he even knows...

So how disabling can NVLD be? Well in my stepson's case, very disabling...