"Low Functioning" NVLD

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I want to apologize for the length. I was trying to answer Horus question of what I meant by self care and similar phrases. And somehow it turned into the longest thing I ever wrote on the topic of which things I have trouble doing. Problem is ice got no control over the length of what I write. This took hours and now my brain is buzzing. Anyway sometimes I get this detailed and the only alternative is to not say anything at all. This is the first time I ever wrote out stuff I have trouble doing so maybe it will be useful for something else even if it's tl;dr here. And also I started out going down a list of ADLs and IADLs (activities of daily living and instrumental activities of daily living) and then went into the sections of adaptive skills on a test I was given once where someone who knew me had to rate ky unaided abilities on a test. Hopefully some of it's useful for someone because I worked really hard on it. No energy left for revising or anything else. Brain going blank. So will send this now. Eek.

I have no usable speech (when there at all words come out of my mouth with no relation to thoughts), used to have some but now it's none. Serious trouble both starting and stopping conversations. Cannot find words unless the words are triggered by something, so I may babble on about cats while I fail to say I haven't eaten in three days or have symptoms of a medical emergency. Have nearly died several times because of inability to communicate with doctors, even at the times when I sounded eloquent on whatever topic had triggered me to type about it. This translates to massive communication difficulties in all possible situations, either because I could not find any words or because the ones I found weren't the most obvious.

Receptive communication is even worse. Much of the time I live in a state where language may as well never have existed (more than just an auditory processing problem). People's speech sounds just like noises. I have to work hard to understand. Even at best my receptive vocabulary is much smaller than expressive, the opposite of most people. I try to pick only some words out instead of all because it's easier to process. Go through periods where I either can't read at all or can decode but not comprehend.

I have the same problem with moving and memory that I have with words. I can only do so when something triggers it. I can only a tiny bit do so when I have to do it on my own power rather than in response to an internal or external event outside my control.

I need help bathing. Both with initiating, and with the physical tasks involved. At my best I ever functioned I would sort of get in the shower and put soap and water random places and get out, and if nobody helped me initiate I would simply not do it even when I couldn't stand my own smell.

I can only brush my teeth if someone hands me the floss, toothbrush, and mouthwash in order. And even then my body often forgets what I'm doing and starts chewing on the brush or moving the flosser thing randomly. The presence of the objects triggers some action, though, and ivwould never do it at all despite wanting to if nobody handed it to me. Just telling me to do it doesn't work either.

I pretty much never wash my hands even though I know that's bad for me and others. They get washed on bath days. Same with washing my face and other forms of washing outside of baths. I keep my head shaved for many reasons and one of them is the trouble of hair-related hygiene.

My ability to dress myself is variable. I need help starting off. I can often do at least part of it and then get help with part of it. At my best I can do all of it except starting, and spend ages before changing my clothes if ever.

I can nearly always eat, but I need it started off for me. When I didn't have services I starved because even with help from friends it just wasn't enough for me to be able to eat enough. Even two feet from food I would fail to recognize that there was anything behind a cupboard door, or else have serious trouble finding my body (made worse by having no help with anything at all -- I also couldn't bathe, clean my apartment, use the toilet in the toilet, just a mess). I can also have trouble with chewing and swallowing and often forget how in the middle of eating and have to find exactly the right way to trigger a swallow.

I can use toilets but often can't get to them. I used to have frequent incontinence because of both inability to get there and inability to recognize the signals but I have urinary retention now which actually helps me keep it in but then I can't get it out and I get infections. I also have enough trouble cleaning afterwards that such cleaning is a daily part of the bathing routine, and still isn't quite enough. Without services I used places all over the house and yard. There was only a four-year period of my life where this wasn't a problem. I've been taught to be embarrassed but... everyone does it and lots of people have trouble doing it.

I have a lot of trouble getting around the house without help starting it up (there's a pattern here). In my last apartment I had a circular route I found easiest to walk around the apartment. But then I had trouble getting off of the circle and going wherever I needed to. It's easier in this apartment but still a problem. I can't just get up and go to the fridge unless someone helps me start or I wait for hours until the right time. Getting in and out of my wheelchair and other major transitions are also part of the problem. (Sometimes I can't get into my chair without a lift, which can either be freezing up from the autism-related movement disorder, or going limp from a physical problem). I also even can have trouble with moving around sufficiently while sitting in one spot, where people have said they left me in one spot and came back the next day and I haven't moved.

I also can't take medications without help and need them ground up because of the swallowing trouble.

I can't plan or prepare meals, period. I can sometimes bake, and when I do it I do it really well, but someone needs to be there. I can't cook to save my life. I ate one meal all the time for months, switching to another one and doing the same, until another person intervened and started planning my meals not just cooking them. Basically this is something I just can't do.
Same goes for housework. No matter how hard I try, cleaning, laundry, taking the trash out, etc. Is way too complicated for me. As the utter and total filth I used to involuntarily live in testifies to.

I can't drive. My visual perception is way too messed up for that. I can't take public transportation (at my best I only did one route and I am not at my best, as I learned after having the cops called to deal with shutdowns and meltdowns and being utterly and totally lost). I can't arrange the rides with the paratransit service I do use.

Which is partly because I can barely use the telephone. It's too much to juggle with a communication device. I used tog be better at this but now it's just a mess. I have a cell phone but when I use it I have to keep it really short because of the difficulty involved. Or just answer yes/no only.

I am nowhere near organized enough to make and keep appointments. Someone else helps me with that. I have never had this skill.

I also need help budgeting. Even with help it keeps falling apart due to lack of ability to communicate between me and staff. It's really been a nightmare trying to get it working.

Tracking medications is another thing way too complicated. There are a lot of them and they all have different dates to call them in and instructions and stuff. Fortunately my case manager is incredibly organized.

The adaptive skills I was tested on at another point were communication, functional academics, self-direction, social, leisure, self-care, home living, community use, work, and health and safety.

I have described communication fairly well. I have a few good skills but no ability to direct communication on my own so I actually scored as low as possible because all the examples they tested for required my worst areas in communication.

Functional academics means the ability to apply academic knowledge in everyday life. I didn't score well because I'm not good at applying any sort of knowledge for daily living situations. I can know a thing, but my ability to deliberately access the knowledge, and my ability to deliberately apply what I have accessed, are not so good.

Self-direction is another thing I bottomed out on. It means the ability to... initiate, plan, and all those other things required to go from "I want to do this" to "I am doing this." As described earlier I have almost no skill in this area. I can only do things (even internal things like remember) when triggered, not because I mean or want to do them. And that trouble moving from intention to action is what they mean by this skill. There are lots of skills you have to have in order to do this and I am in awe of people who can.

Social... I'm autistic. My only friends are people who are either autistic themselves or willing to bend really far to meet me halfway. And I have trouble with most of the usual social skills. I have a few good social skills but they are atypical enough that they're never measured on assessments.

Leisure. Lots of things I would like to do but that problem with self direction gets in the way. I do whatever is immediately possible right in front of me. Typically this involves things people don't consider leisure skills such as feeling the texture of a remote control over and over.

Self-care I've already gone over in way too much detail. Same with home living.

Community use means the ability to use various resources outside your home. Again, for reasons already discussed, not great at it.

I've never been very successful at holding down a job outside of really specialized work training programs, and that's something I couldn't do now. My tiny amount of volunteer work is so tiny it doesn't even remotely qualify as part time.

Health and safety. I am terrible at communicating anything health related resulting in frequent close calls. I need help to do the sort of health maintenance things I'm supposed to do. And my safety skills are so awful they frighten me. I have let strangers walk into my home and inspect the thing. I didn't catch on to the danger of a "will you come see the toy in my car" scenario in my twenties until long after it had passed. I walk into traffic without meaning to. I've had my automatic motor stuff get so out of hand that I've opened car doors on freeways. And I can't generally discern a lot of unsafe situations, and even when I can I can't always act on that knowledge or retrieve it at the right point in time.

So basically, I at the very least need help with all ADLs, and flat out can't do most IADLs, and did really badly on that overall test of adaptive functioning. Some of these are things I've gotten worse at, but frequently the trouble was that something didn't seem quite as bad as a child as it did when I grew up and never learned much more.

In addition to this, I self-injured, especially head banging, in really severe ways for awhile. I still do it sometimes but it used to be nearly constant.

There are a few things that combine to make me suck at these things:

The gap I keep talking about between intention and action. The gap has only widened with time and involves movement, language, memory, thought, etc. I have trouble with starting, stopping, switching, combining, etc. these things too.

The way I perceive the world. I always start out from a point where language and standard category might as well never have existed. The world is just patterns of sensation. I am really good at navigating a lot of the world in that mode. But it makes me have trouble with "simple" tasks like language, recognizing where one object stops and another starts, recognizing the objects themselves, etc. It's a whole different way of perceiving and takes effort to perceive things anything like normally. It makes it so if I feel a cabinet door I don't necessarily know to look behind it. I access language through a variant of the pattern finding thing.

I don't know the exact neurological basis for this stuff. I just know I've compared with others and this is what we noticed we had in common.

I also want to note after that litany... I do have things I'm good at. They're just not that. And even when I am good at something in one context doesn't mean I can apply it deliberately or in another context. And I hope I answered your question.

I am honestly beginning to wonder if I have this rather than Aspergers....

I read this today and it describes my social and learning difficulties to a T so to speak.

http://www.nldontheweb.org/nldentryleve ... enlds.html

S

I also have NVLD and have a very large discrepancy between PIQ and VIQ. In the IQ test I took when I was around 8 years old I had a very high verbal IQ. I also have difficulty holding down simple jobs......I also have trouble mopping and sweeping floors because of spatial impairment! Even cutting paper in strait lines using a paper cutter was impossible for me....I just couldn't figure out how to align the paper. Most of the jobs I've had I've been fired after a couple months for being too slow, not being able to multitask, or in the case of retail not making sales (because the customers don't like me, avoid me and go to another girl)The only reference I have is from a summer job that was created for a person with a disability.I just got my Bachelor's degree but am finding applications to grad school really hard to navigate and am n strongly doubting my ability to get a master's. If I could be a professional undergrad student I might be okay...it's the only thing I've had success at. I still live at home....my mom makes my meals.... I don't drive and don't think it's fair to society or safe for me to ever learn. Maybe with severe NVLD and nothing else it's easier to be successful but it's all the co-morbids that will hinder you. I'm also professionally diagnosed with Asperger's Syndrome, ADHD inattentive type and generalized anxiety disorder. Further I experience periodic episodes of depression. So because of the Asperger's and have sensory issues (I can't function or work in a crowded environment, I just get sensory overload and shut down), and social communication issues etc., because of the ADHD I have trouble with divided attention, time management, organization etc. and because of the episodes of depression I sometimes just lose all motivation and find it hard just to get out of bed in the morning. Anyways....yes I can relate to the OP.

Daydreamer, I don't want to be discouraging, but think very carefully about speech language pathology. I also have NLD, and I was a linguistics major in college and loved it, but immediately started having difficulties when I got my masters in speech pathology. I didn't have any difficulty with the academic work and in fact graduated with a 3.90, but had terrible difficulties with the clinic work. I had difficulties dressing appropriately (trouble understanding the dress code- fashion makes no sense to me), problems with time management, organization, interpersonal skills, paperwork, etc. And things did not get better once I entered the field. I was fired from a couple of jobs, and there was one I thought I was successful at (although I hated it- the stress was killing me), until I talked to someone there and found out that everyone there thought I had a learning disability, or possibly Asperger's. I was told that I could maybe succeed as a speech pathologist, but only if I put twice as much work in as everyone else. The career was just an utter failure. It was stressful beyond belief, and I just could not maintain the desired productivity at work. I also had difficulty creating appropriate goals and figuring out how to target them. In one place I worked, I had such difficulty navigating the building that it was a real problem and factored into my getting fired. After only a couple of years in the field I went back to school for web programming. I have been working in my first web programming job for about 6 weeks now, and it is so much less stressful. No social anxiety from constant interaction with patients/staff, no paperwork which took me forever, no creating a schedule every day (which I was bad at) and then getting terribly anxious when it was changed, and no having to constantly switch between tasks/multi-task, which is very difficult for me.

Just to be clear, I'm not saying don't pursue speech pathology, but please just think through very carefully what the requirements of the job are, and what your personal strengths and weaknesses are. It may also be helpful to have a frank conversation with a speech therapist about this, to get their opinion on what you may struggle with. It is not just me- I have read several stories of speech pathologists and occupational therapists with NLD who really had tremendous difficulty with those professions. Unfortunately, it doesn't matter how smart you are if you have NLD- you will still have tremendous weaknesses that can sabotage your career if essential job skills fall within areas you have difficulty with. My advice to anyone with NLD is to not only choose a career in something you enjoy, but also in something that will rely mainly on your strengths and not very much on your weaknesses.

Horus, I've hardly been on WP for the last few years, but I remember you well, and I'm glad you have a full-time job now, although I'm sorry you're still struggling with other things, particularly depression. I can say that I also have tremendous difficulty living a healthy lifestyle (at times I've literally gone months and months, and maybe a whole year, without eating any fruits or vegetables- although I'm working on it), but that hardly seems an uncommon thing these days, particularly in America, where people are more likely to shun exercise for television/Internet, and just eat what's easiest. I used to struggle with showering regularly, but about 3-4 years ago, I finally got the hang of it. I found that having a consistent daily schedule helps- picking a particular time every day to shower. And the more you do it (the more you practice), the easier it gets to initiate the tasks and carry out all of the steps. If you are still struggling with showering, you may want to make yourself up a step-by-step list of how to do it, such as is recommended on this site:

http://www.geocities.com/growingjoel/lists.html

In fact, that site is great in general in terms of coping strategies. I really recommend it. If one of your main issues is executive dysfunction (which is certainly an issue for me), there are some things you can do to make your life easier. If the problem really is a profound issue with motivation though, that sounds like it is related to your depression rather than NLD. I find that with NLD, the problem with getting things done is (1) remembering to do them (2) having a real understanding of the consequences of not doing them (3) organizing myself to complete the task and (4) actually initiating the task (sometimes I have to think about something for hours before I can actually start doing it- even things I want to do!). I do also have problems with motivation, but I think more often the lack of motivation for a task is related to either the knowledge of how difficult it will be for me to initiate it, or lack of true comprehension of the consequences of not doing it- especially for time-sensitive tasks. Or both.

I was diagnosed with NVLD when I was 17 (I'm 35 now).At the time, I didn't fully understand what having NVLD entailed. It was not explained adequately. I only knew that it was the reason I struggled in math and had trouble organizing my thoughts(among other issues). I didn't know it affected other aspect of my life. Last summer, after years of dealing with anxiety and depression I decided to get retested by a neuropsychologist. Sure enough,I was diagnosed with NVLD. I've really been struggling with the diagnosis. More specifically, I've been struggling with the full scale IQ that was calculated during my evaluation. My full scale IQ is 80.The first time I was tested the full scale IQ was not calculated. I have a bachelors degree in English Literature and a masters degree in Library and Information Science. The full scale IQ was quite jarring.
A little background on my evaluation:
Verbal Comprehension Index: 105 ( My arithmetic subset was 5 and reading comprehension was not tested. This along with the extreme anxiety I felt during testing brought down a section of the test I should have excelled in).
Perceptual Index: 69
Working Memory: 77
Processing Speed: 79

I just feel like a fraud. I've always been considered very intelligent. A full scale IQ of 80 Indicates otherwise. I've always done well academically. How can a person with an 80 IQ have multiple degrees?
Currently, I'm unemployed and seeking a position as an archivist. I obtained my masters degree in 2012 (with several archival internships under my belt). Post graduation, I worked as a project archivist for a year. Unfortunately, the work was unpaid.
I have yet to find paid work in my field. I've had several interviews but I can never make it to the second round of interviews. My severe anxiety gets in the way.
I've been in therapy for several months trying to deal with everything. I was recently diagnosed with agoraphobia and chronic depression. So in addition to having NVLD I also have agoraphobia and chronic depression. Swell.
I've read that NVLD and Aspergers are virtually the same thing. There does seem to be allot of overlap between the two conditions. In fact, when I decided to get retested I wanted to see if I perhaps had Aspergers.
Does anyone else have a low full scale IQ and multiple college degrees? Can a poor processing speed and working memory bring down a persons verbal and perceptual index as well as the full scale IQ? I would love to hear from anyone who has had similar experiences.