NVLD: Part 1

It’s awesome to see all the hits on my NVLD pages, both on my website and the re-print on my blogs.  There seem to be more and more all the time.

Not only was it cathartic to write my life story and how I believe I have NVLD (or maybe even mild Asperger’s), but it was very informative, a gathering of links and research I have gleaned over the years as I wrote and updated that page, even information I’ve gotten from the NLD Yahoo group I belong to.

It’s good to see other people finding it so helpful in their own research.

(That group is NLD Adults.  Their description: “Meeting place for adults diagnosed or self-diagnosed with NLD (nonverbal learning disability.)” [Update: This group no longer exists.]

(Among our members is Peter Flom, a self-diagnosed NLDer who has been quoted and interviewed for various articles and books on NLD.  We also have Pia Savage, an NLD blogger for Psychology Today.  Feel free to join if you fit the criteria.)

Going through my diaries from 20 years ago is also bringing in more tidbits I had completely forgotten about, such as that I used to be far more resistant to schedule or routine changes, even if the change would be for a fun activity, and that my psychologist in elementary school helped me a great deal socially.

This brings more pieces to the puzzle, a puzzle which has intrigued and obsessed me for 12 years, since with a perpetual lack of resources to see a neurologist for expensive tests, I’ve been forced to do this on my own.

I put it with the old elementary and middle school papers which my mom found in the attic and gave me several years ago, and all sorts of old forgotten information: the unreadable chicken scratches of my early grades, Ds and Fs despite an IQ in the 140s, my French and Social Studies teachers constantly yelling at me in red ink for not following directions when I know I would not have deliberately gone against them, and all sorts of other difficulties which I have described in detail on my website, things which fit the NVLD profile.

It also amazes me just how far I’ve come over the years, from complete quietness and no eye contact and never greeting people to at least some more talking and much better eye contact, from terrible grades in middle school to graduating college with honors, from resisting schedule changes to going with the flow, from a room so disordered and dirty it was called a tornado to keeping my house clean and being an organized file clerk.

There is still much farther to go, which a neurologist could probably help with, if one of these days I can afford one.  Such as, driving and socializing are still constant frustrations.

Four Parts:
NVLD Part 1
NVLD Part 2
NVLD Part 3
NVLD Part 4

Nonverbal Learning Disorder (NLD or NVLD) 

Throughout my life, I was teased for being “weird,” and even my own family thought I was “different.”  But to me I was normal, and I couldn’t figure out what their problem was–or how they were able to act so differently.

If I were just shy, or just introverted, I think I would have stopped with that and considered it enough.  But driving terrified me so much that even after getting a license (which was a feat in itself), I avoided driving whenever possible.  If I were just shy, then why did I have so much trouble with driving that I felt like the only teenager in the country who didn’t want a license?

If I were just introverted, then why did even the introverts find me hard to get to know, why did I get lost so easily while driving, why did my aunt proclaim to my mom that she couldn’t do anything with me, why did my mom take me to a psychologist in the mid-80s?

Why did I make so many social mistakes that my peers would not have made, why did my peers seem to know so much better than I did how to handle things?  Why did I have so much trouble with simple greetings?  Why did I have to ask my husband Cugan how to handle new situations, rather than just figuring it out myself like he did?  Why did I have trouble with spoken multi-part directions?

Why did I make so many stupid mistakes while driving that I sometimes feared for my life, why did I have so much trouble maneuvering the car into a carwash that I swore off automatic carwashes and stopped going to that place out of shame, why did I have so much trouble maneuvering the car, period, why did I get so lost while driving even on roads I thought I knew, why did I study the map over and over yet still go the wrong way, why did I have to give up driving just to restore my shattered self-esteem?  (I’m not an idiot, yet driving made me feel like one, again and again and again.)

Why did I have so much trouble dealing with boyfriends and exes, when other people who’d never even dated seemed to know better than I did what I should do?  I knew introverts and shy people who didn’t have these problems!

In February 2000, I read an article in U.S. News and World Report about adults with learning disorders: Not just kid stuff anymore: Many adult Americans find that they, too, have learning disabilities, February 21, 2000.

One woman, Sheila Price, described how she was always getting lost while driving, that she has lived in Richmond, VA all her life but doesn’t “know how to get from one side to the next.  My world is very small because of it.”

I lived in South Bend, IN for the first 18 years of my life, but college boyfriends who visited my home noted that they could find their way around the city better than I could.

Price discovered she had a visual-spatial disorder.  So I googled visual-spatial disorders, and found NVLD.  While reading articles by Pamela B. Tanguay and Sue Thompson, I felt like I was reading about my entire life, all my problems, everything that had ever happened to me–and I finally had an explanation.

I never felt weird on my own, but only because other people labeled me that.  I thought I was perfectly normal, and didn’t understand how other people acted differently, and so easily.  It wasn’t me trying to be defiant or difficult or weird.  It just was the way my brain told me to act.  Now I knew why, that I wasn’t “weird,” that my brain was wired differently than the mainstream, and that was okay.

I have never had the money or resources to be formally diagnosed, but I have many traits in common with nonverbal learning disorder (NVLD or NLD), a visual disorder which hampers such things as map reading, handwriting, navigation, and social skills.

Some researchers consider NVLD to be on the Autism spectrum, while others consider it to not be.  It does, however, have many traits in common with Autism and Asperger’s, making articles necessary which specifically explain the differences between Asperger’s and NVLD.

Some researchers seem to think Asperger’s and NVLD are two sides of the same coin, even though there are many differences between them.  Also, I have come across references to a difference between having the NLD syndrome (full-blown disorder with all the characteristics) and having a nonverbal disorder :

Are there subtypes of NLD?  My child has some of the characteristics of NLD, but not all of them.

There is no research evidence which indicates that there are NLD subtypes.  There is one established set of criteria for the Syndrome of NLD, which was developed by Dr. Byron P. Rourke.

However, there can be a significant difference between the presentation in children who have the Syndrome of NLD and those who do not have the full syndrome, but do have learning disabilities in the nonverbal domains (e.g. dyscalculia, dysgraphia, social deficits, organizational difficulties, etc.).

It is important for parents to know whether their child was diagnosed with the NLD Syndrome, or with a nonverbal learning disability.” –Pamela B. Tanguay, Parents’ Commonly Asked Questions About NLD

Sometimes NVLD seems to fit me better, and sometimes Asperger’s, depending on what article I’m reading and what the focus is.  Some literature I read on Asperger’s makes it sound like “Aspies” are good at math while NLD’ers are bad at math, for example, while others say this is not necessarily the case.

But when I read the Wikipedia article on Asperger’s or the Diagnostic and Statistical Manual of Mental Disorders, fourth Edition on Asperger’s, I see that perhaps I fit Asperger’s more easily than NLD:

I fit criteria A.1, probably 2, and probably 3, along with B.1.  (My research file on Orthodoxy soon grew big enough to fit in a storage bin.)  C fits, especially when I was a child.  D and E fit as well.  Wikipedia also mentions selective mutism as possibly occurring with Asperger’s (more on that below).

But then, other sources refer to Asperger’s as the more extreme version of NLD, the one more like autism, and I don’t have autistic behaviors that I’m aware of–unless you count the little stims I constantly do which are hidden away so no one notices them.

Of course, until NLD makes it into the Manual, I don’t have a corresponding page of criteria to compare it to, and the literature I find often varies in what qualifies as NLD.

Aspies are not the ones who would get put into institutions in former days; they’re on the “autism spectrum” but don’t strike you as being in any way mentally impaired, just a bit odd.

Generally, though, while AS does overlap in many ways with NLD, a few traits make the disorders different rather than the same: Aspies are more visual learners while NLDers are verbal learners; Aspies have certain autistic traits, such as stimming.

Also, figuring it out is further complicated because researchers are finding differences between how males and females manifest Asperger’s–with females seeming more “normal,” or at the very least more like NLD, than the typical male Aspie.

But I’ve also read that visual-processing is the big difference between Asperger’s and NLD.  I tend to use more verbally-based means of remembering things and figuring things out, a combination of looking at pictures and reading the captions, while I read about “Aspies” or high-functioning autistics solving math problems by visualizing.  So Asperger’s and NLD cannot be the same thing, despite their similarities.

While I don’t match every symptom of trouble with visual processing, long before I knew about NLD, I noted problems with speed, sports, understanding everything that was going on around me socially, adapting to routine changes or novel situations, getting lost while driving even if I’d been that way many times as a passenger, everything about driving from keeping on the correct part of the road to finding my way around to reading a map during road construction to paying attention to traffic markings/signs/signals, even with correctly interpreting instructions given by teachers.

Once, as a sophomore in high school on a trip to Chicago with my German class, I got lost in the Christmas tree exhibit in a museum, which also resulted in losing my group.  I kept wandering back and forth trying to find the exit from the exhibit, before I finally figured out where it was.  One of my friends tried to find me, and even yelled my name once.

I can recall confusion while we were practicing for graduation ceremonies.  I wrote about this in my book The Lighthouse: I heard the teacher say we could go back to our classrooms, but everyone was processing back to the gym, so for a few minutes I was going the wrong way while everyone else went the right way, and I did not know what happened.

I also found some 7th-grade French papers which were covered with angry red comments, such as scolding me because we were “very clearly” told to number the page this way, not the way I did it.

I am absolutely certain, knowing myself, that I would not deliberately have disobeyed her instructions.  And while many of her directions were in French, directions such as that were most likely given in English.

I did horribly in Shop class.  I took the class because all students were required to take Shop and Home-Ec.  I believe I received a D.  I simply could not keep up with the rest of the class, no matter how hard I tried.

No matter what I made, the teacher was dissatisfied with it.  I even have a plaque, a tin punch-outline of a horse over a wooden base, which I thought was pretty and finally done well.  Yet even that got a poor grade.

We were supposed to build a miniature house, but even though I worked on it as hard and fast as I could, I saw guys in the class get theirs done while mine still straggled in the early stages–and never did get finished.

While I’m not so disabled in NLD-related things that it affects everything I do, being quite capable in many ways and able to learn how to do many things–it’s still enough that I identify with NLD.

I have actually lost what I considered a very close and dear friendship because he and his wife refused to believe that my problems were from NLD rather than stubbornness or my imagination.

They did not work with me at all, just accused me of making it up, and kept expecting me to change while she kept doing the same mean things that pushed me further into my shell and made it very difficult to interact with her socially.

At work I was very capable of learning clerical duties, and a hard worker, but a ringing phone yanked me away from what I was doing and presented me with having to deal with some issue that was unknown.

If it was a routine thing, such as taking information for an insurance quote or for my boss to call back, I could learn how to deal with it, and it wasn’t so bad.  But sometimes it did not follow routine, leaving me uncertain what to do or say.

And it always yanked me out of whatever I was doing, which is a problem for NLDers.  Even when I was a kid, my mom noted that I did not like to be pulled away from things I was doing.

So you could say that yes, the NLD, while not severe, is bad enough that it does affect my daily life.  I go into more detail about this below.

This quote, from an interview with Peter Flom, is comforting, because he’s quoted in all sorts of places (books, online articles), yet he diagnosed himself:

I’ve never been officially diagnosed with it.  I read about it online somehow, and I read a description of what NLD was like, and a lot of it was me, except that two of the traits we’re supposed to have is no sense of humor and being bad at math, except sometimes for rote arithmetic.

But I’m a statistician for a living, and most people think I have a sense of humor. So I wrote to the — I wrote in and I said, “Where do I go to return these traits so that I fit better with your diagnosis?”

I have a lot of traits — and NLD is probably the problem that fits me best, but I have traits of autism; I have traits of areas where I’m gifted; I have things in common with Asperger’s people. And I tell people I have 100 percent diagnosis of being Peter.

And every kid, every adult, who has a disability of any kind, really, has a 100 percent diagnosis of being them. Nobody, or just about nobody, fits the profile of anything exactly. —An Interview with Peter Flom, Ph.D. on Nonverbal Learning Disorder, by David Van Nuys, Ph.D.

 Do Girls Have A Different Expression Of The Syndrome?

The boy to girl ratio for referrals for a diagnostic assessment is about ten boys to each girl (Gillberg 1989). However, the epidemiological evidence indicates the ratio is 4:1 (Ehlers and Gillberg 1993). This is the same ratio as occurs with Autism. Why are so few girls referred for a diagnosis?

So far there have not been any studies that specifically investigate any variation in expression of features between boys and girls with Asperger’s Syndrome, but the author has noticed that in general boys tend to have a greater expression of social deficits with a very uneven profile of social skills and a propensity for disruptive or aggressive behavior, especially when frustrated or stressed.

These characteristics are more likely to be noticed by parents and teachers who then seek advice as to why the child is unusual. In contrast, girls tend to be relatively more able in social play and have a more even profile of social skills.

The author has noticed how girls with Asperger’s Syndrome seem more able to follow social actions by delayed imitation. They observe the other children and copy them, but their actions are not as well timed and spontaneous.

There is some preliminary evidence to substantiate this distinction from a study of sex differences in Autism (McLennan, Lord and Schopler 1993).

Girls with this syndrome are more likely to be considered immature rather than odd. Their special interests may not be as conspicuous and intense as occurs with boys.

Thus, they can be described as the “invisible” child–socially isolated, preoccupied by their imaginary world but not a disruptive influence in the classroom. Although girls are less likely to be diagnosed, they are more likely to suffer in silence.

An important issue for girls is that during adolescence the usual basis for friendship changes. Instead of joint play with toys and games using imagination, adolescent friendship is based on conversation that is predominantly about experiences, relationships and feelings.

The young teenage girl with Asperger’s Syndrome may want to continue the playground games of the primary school and starts to reduce her contact with previous friends. They no longer share the same interests.

There is also the new problem of coping with the amorous advances of teenage boys. Here conversation is acceptable but concepts of romance and love as well as physical intimacy are confusing or abhorrent.

In an attempt to be included in social activities, some teenage girls have described how they have deliberately adopted a “mask” like quality to their face.

To others at school they seem to continuously express a smile, but behind the mask the person is experiencing anxiety, fear and self doubt. They are desperate to be included and to please and appease others but cannot express their inner feelings in public.

The author has observed girls with the classic signs of Asperger’s Syndrome in their primary school years progress along the Autism/Asperger’s Syndrome continuum to a point where the current diagnostic criteria are no longer sensitive to the more subtle problems they face.

The author’s clinical experience would suggest that girls have a better long-term prognosis than boys. They appear to be more able to learn how to socialize and to camouflage their difficulties at an early age. This is illustrated by Vanessa’s poem. —Tony Attwood Answers Some Common Questions About Asperger’s Syndrome

I identify more with the first few paragraphs, about being less conspicuous than boys with Asperger’s, though I was still considered “odd” and had no trouble turning from games to boys/feelings in my teens.

As for a better long-term prognosis, I would agree with that, because I was capable of learning socialization, though I do still struggle with it.

However, the struggles I have now could perhaps be more closely aligned with introversion, though I still have remnants of what seems to be Asperger’s, NVLD or selective mutism, making them more severe.

List of Female Asperger Syndrome Traits

Asperger’s Disorder & NVLD: How are these two disorders related to each other? (Hey, according to this article, one NVLD trait is a history of unusual thinking, such as magical/bizarre beliefs.  I found a lot of that in one of my old diaries!)

NLD or Asperger’s Syndrome?

Informative Wrong Planet Discussion

A study showing that 25% of NLD subjects have benign cysts or legions in their brains; 1 Aspie subject; 1 neurotypical (normal) subject.  It’s a minority in any of the three groups, but far larger in the NLD group than even the Aspergers group.

This blog post suggests that the autism spectrum should be seen as more of a “ballpark” than a “spectrum.”

Final Note. Many students of AS and NLD seem to think that they are one and the same. Of course, they are not. Reflections on the relevant sections above and the NLD and Neurological Disease section will show this assertion of identity to be absurd. —Byron Rourke

Part of the trouble is that very little research has been done into Asperger’s in girls, while much has been done into NLD, and what research is coming out tends to make Aspie girls sound much like a quiet version of NLDers (like me):

Aspergers in Girls

More Than Just Quirky

This video, a lecture on social emotional learning disorders, talks about differences in learning disorders, levels of difficulty, classification, etc. [Update 8/21/17: No longer works.]

(This is from the 2004 UC Davis M.I.N.D. Institute Summer Series on Neurodevelopmental Disorders.  The lecturer is Meryl Lipton, M.D., Ph.D., on “Social Emotional Learning Disorders: The Dyslexia of the 21st. Century.”)

The lecturer notes that a lack of clear diagnoses affects how people perceive those who have NVLD or Asperger’s, unlike if you have, say, a broken leg.  Even professionals are having an awful time telling the difference between Asperger’s and NVLD, and whether or not they’re autistic.  This also shows the differences between social understanding and social execution.

My problems seem to be less with understanding social situations–though I do struggle with that, too–and more with execution.

(This is probably because of age, experience and reading various articles about body language and expressions.  NLDers can learn, it’s just that they don’t pick it up instinctively like “neurotypicals.”)

I can usually understand basic social situations, though I probably struggled far more with these things in my childhood, considering my persistent loneliness and ostracism.

The lecturer speaks of complex social rules which sound precisely like what are probably tripping me up, such as knowing when to join a conversation, gesture, voice modulation, facial expression.

Even when I know social rules, I have trouble executing them: I’ll say hi if someone says it to me but struggle with doing it first; I rarely say a person’s name after saying “hi.”  It just doesn’t come naturally to me, and I don’t think of it, or feel too awkward to do it.  I don’t shake hands easily.

I don’t hug easily.  I rarely gesture and wouldn’t know how to do it if I did, even though I usually understand the gestures of others.  I don’t speak in a monotone, but I have noted that my speech seems far more awkward (both pronunciation and finding words) and less animated than others’.  I have no idea what facial expressions I give out because I rarely pay attention to that.

I have trouble modulating volume of my speech as well, with people constantly complaining that I’m too soft.  In my head, I sound very loud, and when the people around me are too loud for my sensitive ears, I feel annoyed and start involuntary yawning.

When speaking with a new person, I may be happy they’re there, and want to speak to them and get to know them–but end up with a stone face and very little eye contact because it’s hard enough just thinking of what to say from one word to the next!  It’s far easier for me to communicate via writing, far more eloquent.

My college friends once complained that I didn’t say anything to one of them whose cousin had died; it just never occurred to me that I needed to do that.  In no way did it mean I didn’t care.

The development of Depression in persons with NLD appears to result from a combination of factors that lead to fairly consistent experiences of failure, especially in social relating, and even ostracism by valued others and peers.

The child/adolescent with NLD finds that he is not invited to birthday parties, not chosen on teams, not sought out for companionship and conversation, and the like. Because of his gullibility, he may also be led into compromising, even abusive, situations that result in much grief and anxiety. —Are persons with NLD prone to develop Depression?

Here is an article on dyssemia, a word coined in 1992 to describe the trouble people with NVLD have with social situations.  Chronic dyssemia is termed social emotional processing disorder.  Here you’ll find a quote from the back cover of Helping the Child Who Doesn’t Fit In:

We’ve all known children like this:

• they stand too close and touch us in annoying ways;
• they laugh too loud or at the wrong times;
• they make stupid or embarrassing remarks;
• they don’t seem to get the message when given a broad hint or even told outright to behave differently;
• they mistake friendly actions for hostile ones, or vice versa;
• they move too slowly, or too fast, for everyone else;
• their facial expressions don’t jibe with what they or others are saying, or
• their appearance is seriously out of step with current fashions, they don’t dress well for the occasion, etc.
• they are known to stare at people, stalk people, or do something that annoys other people or makes them feel uncomfortable
• they have problems dating and interacting with the opposite sex in a romantic way. Many dyssemics are love shy.

There are many more descriptions of dyssemia in that article.  This sounds very much like me, such as with fashions, hair and makeup, difficulty fitting in, lack of punctuality (more of a problem when I was younger), social awkwardness, a difference in ability between receiving and expressing nonverbal messages, growing senses of grief and despair over loneliness, saying things in a way I didn’t intend and suffering consequences, and various other things you’ll read here.

I’ve always had trouble making eye contact and reading the various nuances of body language, which has helped make me socially inept in many situations; these are both NVLD traits.  (I have gotten better over time, as I’ve worked to improve eye contact, read about body language, and studied actors on TV.)

A person with NVLD can be academically gifted–especially with such things as typing, details, and proofreading–but have no clue why classmates call her weird, rude, gullible, and the like.  It certainly hindered my learning of proper etiquette–though a good part of that was probably the influence of my rude brothers, around whom I did not want to seem “prissy,” because they teased me enough already.

For an example of something my brothers did not influence, but came from my lack of understanding social norms: Until adult family members told me so in late elementary school, I didn’t realize that you’re supposed to say “hello” or “good-bye” to someone who says it to you.

It took even longer for me to realize that I could say it first.  I wasn’t trying to be rude; I just didn’t understand.  Apparently this is something that most people pick up on naturally.

This blog speaks of Asperger’s and friendships; much of it sounds like my own experiences and limitations and cluelessness, especially “Morning Greetings,” “Helping Aspie Children Make Friends,” “On Aspie Courtship” and “Asperger’s and Depression–Part 2.”  (It’s worthwhile looking up all four parts of the Depression series, as they all sound very familiar.)

These also mention various strengths of Asperger’s, such as alphabetizing music and movies (I do that) and long-term memory (witness my College Memoirs).  Also see Why Can’t I Say Excuse Me?

I grabbed onto the stock answer of “fine” when asked how I am, because it requires no thought.  But as a teen, “fine” sounded too boring and common, so I switched to “pretty good.”  Some people interpret it as “not so good,” but I haven’t a clue why, because it basically means “fine.”

I especially noted these things in the above Aspergers blogs and other articles, which sound like me:

• rarely approaching others for friendship but wanting it just the same
• having trouble with “correct” responses for social greetings such as Good Morning
• not inclined to initiate hello or good morning
• shyness, quietness
• lack of eye contact or time to process being the biggest problems with reading body language (rather than just being unable to read it–it seems the blogger and his Aspie commenters are often able to read people if they remember to look)
• trouble saying “excuse me”
• missing unspoken social rules until somebody gets upset and scolds me for not doing them
• a voice that’s either too loud or too soft (soft in my case)
• long memories and tons of reflection even when others have forgotten the incident
• expecting my hubby to just tell me how his day was, if anything interesting happened, rather than expecting to have to ask, “How was your day?”
• and various other things regarding social interaction

I have such a long memory that I have probably thousands of pages of memoirs and journals on my computer.  My first college boyfriend was impressed with how much I could remember.  I often replay things that happen, conversations or incidents, replaying them many times either to remember good things or to analyze them to death, trying to figure them out.

There’s also alphabetized music and movies, and the fact that I’ve turned around so much from an extremely disorganized childhood (and chronic lateness that drove my parents to distraction) to having daily housework schedules and routines, alphabetized music, and trying to be as punctual as possible.

The alphabetizing was because it seemed practical as my music and movie collections began growing.  The routines began because I wanted to be a good roommate in college, and because if I wanted to be a housewife one day, I needed to learn how to clean and organize.

I’ve always been afraid of matches, knives, and pull-top cans, not just because of their potential for harm, but because I actually have cut myself on those razor-sharp pull-tops–and also on a razor blade I was using one day to cut a picture in Photography class.

It is healthy, of course, to have respect for these things and do what you can to minimize the risk of hurting yourself, slicing a finger, and the like.  But people have been surprised at how afraid I am of these things.

I use them whenever I must–it’s impossible to cook without using a knife once in a while–but I don’t get into situations where I have to use knives otherwise very often.  I rarely lit matches even before those handy long-handled lighters came on the market.  Once, while I was staying after class with my Chemistry teacher to work on some lab, he had me light a match, and he said, “I’ve never seen anybody have so much trouble lighting a match!”

Even when I have a can that touts its “handy pull-top that doesn’t need a can opener,” I’ll use my automatic can opener–which is also designed to blunt the edges so you can’t cut yourself on the top after it’s been removed.  If the can opener won’t work on the can for some reason, I open it verrrrrrrrry caaarrrrrrrefully.  And once ended up slicing open my finger just the same.  Gah!

I don’t have one all-encompassing interest that I know everything about, but all through my life I’ve gone through various “phases” of interests, such as genies, horses, fairies, playing “Cinderella” over and over and over again, playing “Alice in Wonderland” over and over and over again, ancient Egypt, Jane Austen, Goth, Orthodoxy, NLD/Asperger’s, writing my college memoirs, research on topics for my “life” page, theology….

As a child, I’d study whatever books we had in the house (usually encyclopedias) on the subject.  In my teens, I’d walk down to the library after school.

With the advent of the Internet, my library has exploded, both in what I can buy (hard-to-find books on Amazon) and what I can Google.  I print hundreds of pages of information on whatever my current subject is, and often go back to older subjects and Google and print more.

I get so into subjects that I have to be careful or I’ll tire my husband with talk about them.

My college memoirs files are far larger than what I have published here on my website, probably thousands of pages, letters, college newspapers, and various odds and ends, along with the many diaries I kept.  There are still more files on various other parts of my life, going to 2002 and back to my childhood.

Then there are the files and files of e-mails and letters which I have kept since college, and still keep, especially since my own e-mails often go into detail on life events and my thoughts and feelings.

(My ex-friend Richard seemed to think this was odd, and referred to some movie he saw once about some stalker chick keeping detailed records on her friends.  But why wouldn’t I keep letters and e-mails sent to me by friends?  What the heck does that have anything to do with some weird stalker chick in a movie?

(His wife Tracy seemed to think it even odder that I keep copies of the e-mails and letters I myself write.  But why wouldn’t I do that?  Do they just throw away everything they read and write as if it’s meaningless even when it comes from a dear friend?  Did they never keep a diary?)

I spent several years writing down everything that had happened to me, first college memoirs that filled hundreds of pages, then memoirs of the years following, then high school and childhood–until pregnancy, morning sickness and eventually having to watch over a small child, put this on hiatus.

I had always wanted such a detailed account, ever since I read the Little House series as a child.  My psychologist (when I was about ten or eleven) hypnotized me because I wanted to find out if I could remember every detail of my life this way, and write it down.

I can still remember things that happened when I was a small child.  My dad was surprised a couple of years ago to find out that I–in my mid or late 30s–remembered my mom picking me up in the shower so I could see our dog outside the window–because he said that bathroom window was replaced with a fan when I was only a year old!

I still remember my old crib, mouthing a small plastic lamb, digging in my diaper and using the “fingerpaint” I found to decorate my toys, some elements of potty training–even though I believe I was potty trained around two or three.

My many written accounts, and all the diaries I filled and letters I saved, were meant so I could remember everything interesting that ever happened to me.  I also kept ICQ records if the conversations were interesting, and same thing for some IRC chats that gave details of the life or thoughts of the dear friend I was chatting with.

These are to help my memory.  I had noticed over time that while I could remember in surprising detail many things that had happened in the past few years, such as conversations or events or what people were wearing at a certain time, details farther back in the past were beginning to fade, and I didn’t like losing them.

I do wonder if this desire to record everything is another sign of Asperger’s or NVLD.  Some interests may eventually get set aside, such as genies or horses, but never completely forgotten.

I have various little things I do which resemble OCD, which I’ve done since childhood, but they’re so subtle that I doubt anybody notices but myself.  They seem to increase when I’m going through anxious periods.

For example, sometimes I’ll feel my heel strike a crack in the sidewalk, and I don’t feel right until the opposite heel strikes a crack in the sidewalk as well.

I’ll stare at tiles and find patterns.  I’ll stare into space, or my eyes will cross, as a form of relaxation when visuals are getting a bit overwhelming.

If I’m folding laundry and a sock or towel hits my leg, oftentimes I won’t feel right until I hit one against the other leg as well.

It doesn’t always happen, but as I noted, seems to increase in times of anxiety.  For the past 6 months, while dealing with a very emotionally traumatic situation, I’ve been doing these things quite a bit [this part was probably written around February 2011].

I count letters in words, hoping for even numbers of letters as my eyes sweep back and forth over the word in various patterns.

I’ll do the same thing with letters or numbers or pictures, my eyes sweeping over an object back and forth an even number of times to form an even pattern.

A web video stuck on an endless loop (such as in avatars or page 3 of the below-linked forum discussion) can drive me crazy, as I start wanting to see it go through the loop a certain number of times before I turn it off.

Sometimes I will sit and stare, a kind of “rest,” or just let my eyes go unfocused (crossing them, apparently) because it’s restful.

Thoughts will circle in my head until they’re said in just the right way or I feel them in my throat the right number of times.  Certain phrases will go through my head again and again and again until they interfere with other thoughts and activities and seem about to drive me crazy.  (These are not “voices in my head,” but my own thought-voice.)

I also tend to chew the inside of my mouth, absent-mindedly.  It hasn’t caused major problems, though occasionally I bite myself.  😛

I’m not sure if NLD has traits like these, but Asperger’s does; a quick Google search on “mental stimming” brings up a forum discussion on this very thing.

Some of these things will go endlessly through my head so much that I barely notice it, or die down for a while, but start up again in periods of depression or anxiety or deep thought.

A blogger with Asperger’s describes stimming here, and one of his commenters described my thing with sidewalk cracks here.  Apparently people with normal brains stim too, so I don’t know what the difference is between “normal” and “Asperger’s” stimming.  Needs more research….If what I do is normal, then NLD is more likely, as it’s more mild than Asperger’s.

Here a blogger, who after her children were diagnosed realized she herself had grown up undiagnosed with Asperger’s, writes that she can never stand still.  She shifts her weight back and forth from one foot to another.  She was sure lots of people do this, until she started watching, and saw almost nobody doing it.

I do this in church.  Since I go to a liturgical church, I can say with certainty that I’m not moving to upbeat praise and worship music (which tends to make me want to avoid swaying, anyway).

When I’m not in church, but standing at a corner waiting to cross the street, or standing in line, I rock back and forth on my feet.  I just can’t stay still without a lot of effort.

Cugan does this too, so the question arises: is this common or isn’t it?  Some comments I find on blogs are that everybody stims, it’s just a question of how socially acceptable the stimming behavior is: making strange noises vs. tapping your pencil, for example.

Here the same blogger goes into detail about stimming and where she thinks the line is drawn between “normal” and autistic/Asperger’s stimming.

I’ve always felt very out of place dealing with small talk and social interaction, except when I’m with one or two people talking on a subject to which I can contribute, and I start chattering away like a “normal” person.  🙂

My brain works differently from other people’s, so differently that common, normal social situations–which “normal” people can navigate with ease–often leave me feeling awkward, exhausted, embarrassed.

I had to train myself to say “hi” or “good morning” or “pretty good” when other people made the usual greetings; this did not come naturally to me, and I still use a “script” rather than improvising different responses or animating my face or any of that.

In fact, until my mother and aunt began telling me that I should respond when people greet me or say good-bye (or they’d consider me stuck-up), I had no idea that I was supposed to, probably contributing unwittingly to my social exclusion at school.

Another time, a friend had driven me home from youth group events a few times; I was completely surprised and taken off-guard when she yelled at me from the car window how nice it would be for me to thank her.  I had no idea this was expected.  So I immediately thanked her, and from then on, made a point to say thank you every time anyone drove me anyplace.

Also, growing up it annoyed me that my parents kept saying “thank you” to waiters and waitresses.  I figured, they’re just doing their jobs, and “thank you” is for when somebody does something for you that was not expected.  In my young adulthood, after two boyfriends disagreed with me, I finally changed that attitude, but there was nothing disrespectful about it, it just seemed to make sense.

It’s been harder training myself to initiate greetings, but I do to some extent now.  There are times when somebody gives me a piece of news and I don’t say much, even though in my mind and heart I’m reacting like anybody would; I’ve started wondering if maybe I’m supposed to be saying something in particular rather than just feeling a reaction….

However, when I’m interacting with people online, I find that I can more easily initiate conversations, say how are you, make jokes, react when people tell me news, probably because everything is communicated with the written word.

I can relate to the common Asperger’s comment of feeling like an “alien” because I’ve always wondered why I have so much trouble knowing how to talk and act like everybody else does, or getting out a greeting that doesn’t sound like a mumble or a croak (as my voice often cracks on first use).

I’ve always wondered why people keep commenting on my quietness or lack of eye contact, or why they keep expecting me to do things differently than how I do them.

Even the way I move my body has always felt “different.”  I struggled with figuring out how to walk, whether to swing my arms, how to swing them naturally, how to hold my spine in correct posture instead of hunched forward or too far back.

I felt that arm-swinging was ugly, and decided not to do it; then the kids started saying I walked like a zombie, even the janitor told me to swing my arms, so I had to re-train myself to do it.  To this day, I sometimes have to stop and think which arm swings with which leg.

I see other people relaxing their limbs during conversations and such, while I feel more reserved and don’t know what to do with my arms or hands.  But I don’t have aspie meltdowns, though I’ve been told they are not a necessary part of Asperger’s anyway.

I do occasionally shut down, maybe not to the extreme of aspie shutdowns.  But I do occasionally withdraw into myself.  When another family stayed with Cugan and me for a while and problems began arising, to such an extent that the day was nonstop stress, I shut down.  It was an inner thing, mostly–me sitting and staring into space–but I had trouble keeping up with the housework.

Once, at a teen retreat for the church district, after a youth pastor complimented me, I smiled and maybe chuckled in response.  I didn’t know why he gave me a funny look, then looked at my friend.

The youth pastor was a stranger to me, but my friend was from my own youth group; she told him, “Nyssa doesn’t know how to take compliments.”

I didn’t know I didn’t know, or what I was supposed to have done or said instead!  I don’t remember my age, just that it was the age of mullets, and I believe I was in high school.

I’ve also found references to giving the proper “noises” when someone is speaking, to show that you’re listening.  One of my teachers in college, who was Swiss, once scolded me because I never made these “noises” while she was speaking, that I was the only person she knew who didn’t, and she couldn’t tell if I was listening.

I was indeed listening, but had absolutely no clue what she was talking about with these “noises.”  I thought it was her problem, that she was frickin’ crazy, because nobody ever mentioned such a thing to me before.

I wondered if there was something about Swiss culture that made her (and my suitemate who was also Swiss) keep getting annoyed with me when other people were usually nice to me. Heck, just having to stop and remember to nod your head or say uh-huh or any of these other things, can be rather distracting when you’re trying to focus and keep your mind from wandering.

My Swiss suitemate once asked why I didn’t say “hello” to everyone nearby whenever I came into the suite.  It just never occurred to me.

At home with my family, I never did it there, either, or responded when people came home and said hello.  It just never occurred to me.  And well, it seems like at home, you should be able to relax some of those social rules that are so exhausting because you have to keep remembering them and forcing yourself to do them.

In middle school, one of my classmates asked me, “Why are you so gullible?”  I had no idea what she was talking about, so could not answer.  Then she told me one of my other classmates, a sweet girl, was born a boy and had a sex change operation.  I made no connection to her gullibility question, and believed her for some time after.  (By the way, she has since apologized for past teasing and we are now friends.)

Nowadays I’m more discerning, I hope, because of this and other times when I got burned from being far too gullible.  Some of these times are documented in my college memoirs: guys making me believe one thing, when another thing was true.  That would be Peter, Shawn and Phil, who deceived me in different ways.

But despite my being more skeptical and cynical, it seems to have happened yet again recently, when a friend told me some things were perfectly fine, but when I did them, I got into trouble for them.  Then I caught him in another lie.  I no longer trust him, so for various reasons he is no longer my friend.

Gullibility can be traced to not catching body language that would alert more discerning people that this is a lie.  I can easily dismiss wingnut website conspiracy theories, but if it’s a friend or other loved one, I expect them to tell me the truth.

School was so stressful for me that I preferred the summertime and other breaks, when I could stay at home all day, no kids to bug me.  My mom noted that I seemed more relaxed then.  I never fit into the school social scene.  If there was a geek group, even they didn’t invite me in.  But I did find individual friends here and there.

High school was a bit better: Freshman year, I ended up at the “cool” table because I knew somebody who sat there the first few days, but then she moved somewhere else and I didn’t know how to change tables.  These “cool” kids weren’t so cool after all, popular kids who just kept making fun of me.

My Personal Abuse Stories page describes how the boys sexually harassed me, and also notes how I was recently bullied by a woman near 30 years old because of my quiet nature.  I later was told by a nice Campus Life boy that he and his girlfriend kept wanting to invite me over to their table because they saw the crap going on at the popular table, but for some reason they didn’t do it.

Sophomore year was much better, however, because a genuinely cool girl, a senior who was also in Campus Life (a school-based Christian club), befriended me and took me under her wing.  After that, I was able to find a group of nice kids to sit with at lunch every year, mostly Campus Life kids.

It wasn’t until after a year of college social life that I began feeling dissatisfied with my aloneness on breaks, though I always enjoyed having friends.  I was so socially awkward in high school that if I did find a friend to call up on the phone like normal girls do, they’d wonder why I called.  With most people, even close friends, it’s hard for me to talk on the phone; I prefer face-to-face or e-mails/letters.

I found a friend senior year who lived nearby, and would call her every day during the summer, which I thought was normal girl behavior, but her family started getting annoyed about it.  It was all very confusing.  Dealing with Richard was also very confusing, because sometimes he’d be happy to talk with me or chat with me online, and sometimes he’d seem to be avoiding me.

To be continued….