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), 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, http://www.nldontheweb.org/nldentrylevelreading/parentsquestions.html
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 ñ 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.
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!)
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 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):
This video, a lecture on social emotional learning disorders, talks about differences in learning disorders, levels of difficulty, classification, etc. 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, 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.
I was a latecomer to learning profanity. I knew some of it, and even my mother used a few such words, but my dad didn’t (at least around me), and I was fairly sheltered from them. I’d learn them from time to time at school, but somehow still missed out on others.
I couldn’t figure out why my classmates thought it was so funny when one of them showed me “Dick” written on a piece of paper and had me read it, and I said, “What? It’s just a name!” Or why they wrote the “a–” word afterwards, I refused to say it, and they said, “It’s just a name!” Uh, Dick is a name, but the a– word is NOT a name. What the heck is wrong with you?–I didn’t understand the joke until I later asked my mother about it.
In 4th grade, when I was still playing with my hands around other kids, and when the music teacher would always play a 45 of a popular song at the end of class, we were listening to a song which I started acting out with my hands. I associated that song with a story I wrote, which had pots and pans dancing around; I formed the pots with my hands, with the middle fingers as handles, and had no clue why the entire class–even the teacher–was laughing as if I were doing something naughty. (These were 4th through 6th graders, all of whom seemed to be in on the joke, except for me.)
I didn’t learn the “c” word until sometime in my mid or late 20s, so when my ex Phil started laughing at a Monty Python tape routine which replaced “c” for “b” and they said “bunt,” I was completely baffled. I thought the “69, dudes!” joke was funny because Bill and Ted were silly.
I didn’t understand why my boyfriend freshman year of college thought “Mary with a cherry” was a funny way to refer to the Virgin Mary (some joke that was going around about a drunk priest).
I didn’t hear the alternate meaning of “beaver” until my senior year of college when one of our guy friends brought over a movie that used that term. Yet even then, a year later, I thought Primus’ “Wynona’s Big Brown Beaver” was about, well, a beaver, to my husband’s amusement.
My roommate in college was actually more sheltered than I was, so I had to explain a few things to her. But I got the impression that I had somehow missed out on quite a bit. Not that I wanted to learn those words, because they were sinful, so I never used them. My Campus Life friends rarely used them, either, or my other school friends. Even now, I’ll still come across terms or words that my husband or a male friend understands, but I’ve never heard it before, so he’ll wonder how the heck I never heard that or never knew what it meant.
This is me to a T: “Perseveration and the Broken Record.” [This blog post by Aspie Teacher no longer exists, but I think it may have been moved here.] Pertinent quote:
I especially have trouble derailing myself when I am having trouble processing something. This can cause me great stress. I can feel that I have gotten stuck in a feedback loop. My husband has been known to get very irritated with me when this happens. This only makes it worse, because I end up feeling guilty, stupid, and helpless that I can’t do anything to break the feedback loop.
Since receiving my official diagnosis over a year ago, my husband has tried to think of better ways of helping my brain switch gears when it gets stuck. Usually I just need to talk and have him listen without him judging me or trying to solve any problems.
I have come to realize that verbalizing what in in my head helps me process it, but this is not always an easy thing for me. I can’t always find the words to convey what I need to say. Writing has become my voice. It helps me process the chaos that can develop in my brain. I also have found that what I need is understanding and encouragement. These two actions can do so much for a person.
Another blog post by someone diagnosed with perseveration:
Sometimes it happens when I am trying to diagnose a problem and I keep barking up the same solution. Other times, it happens emotionally. My brain can get stuck on something emotionally and I keep going over it again and again. Ruminating over past incidents becomes a bit of a tape that gets played over and over again. I find I can ruminate over unhappy or unfair things a bit excessively.–The Broken Record of Perseveration
I have the words and phrases that keep going through my head over and over again. I have the recurring obsessions over various special interests, though not to the level (or strangeness) of an Aspie. And I have the emotional upsets that keep going around and around in my head even months or years after the incident that triggered it.
You could ask anyone who’s been around me during tough times of my life–parents, college friends, college acquaintances, old roommates, my husband–and they’d tell you how I go over and over things again and again and again.
I’d hear of people wanting to go inside themselves and not talk after a difficult incident, and their loved ones trying hard to pull them out so they’ll feel better–and I’d wonder how anybody would want to keep that inside. I, on the other hand, want to talk about my problems, far more than anyone wants to listen.
I had no idea I did this until my first big heartbreak in college. I’d been heartbroken many times during my childhood and adolescence, since I was boy-crazy from a young age but it was usually unrequited. It would bug me for a while, but I would deal with it, maybe cry once or twice. But I was not prepared for what it felt like to have a guy love you back (or at least say he did), promise he would marry you, tell you you were meant to be together, and then break up with you. I was devastated, and had no idea what to do or how to get relief, or how to get him back.
I talked to anyone who would listen: acquaintances, friends, roommate, suitemates, Mom, Dad, best friend back home. I wrote a few letters to the guy to try to change his mind, pouring out my feelings and argumenta (not a typo) for why we should get back together, but they didn’t work the way I expected, so I stopped doing that.
I had no idea that my discussions of the guy with other people had gotten to be too much for them until one of my friends told me so one day, that they were tired of hearing about him. It just never occurred to me that I could be talking about him too much.
So after that I went within myself, because even though I stopped talking about the matter, I didn’t stop thinking about it. I couldn’t stop. I filled diaries with my thoughts about it. I wrote it into stories.
This perseveration happens again and again with various issues in my life. Years later, something will trigger a memory and I’ll start wondering again: How could I have done that? How could they have said that? How embarrassing! How infuriating!
Being upset over a breakup may be long past because I don’t want those guys anymore and am happily married. But I’ll still remember the nasty things a guy did or said. One reason why I keep a record of my life is to get these thoughts on paper and–I hope–leave them there.
I try to limit how much I talk about something to keep from annoying people, but that doesn’t mean it’s gone from my mind. Normally, it’s constantly present until my mind finally moves on to something else. And apparently I still talk about things enough that my husband starts to talk about me “going around and around.”
All my life, there have been incidents where I did or said something that seemed perfectly reasonable to me, but the people around me thought it was strange for some reason. Like when, as a kid, I shoveled the top of a snow bank by the fence, rather than the sidewalk, because I liked to walk up there instead of on the sidewalk on the way to the garage. Two guys in a car stopped and asked what I was doing, and obviously thought I was crazy. But I just wanted a clear path to walk.
In-depth articles explaining NVLD or NLD are here. The best ones I’ve found are “Nonverbal Learning Disorders: What To Look For” by Pamela B. Tanguay and “Nonverbal Learning Disorders” by Sue Thompson, M.A., C.E.T. Other excellent resources: http://www.aspires-relationships.com/articles_nvld.htm, NLDline and NLD Ontario. Also see Nonverbal Learning Disorder Overview, FAQ, Parents’ Questions and Non-Verbal Learning Disability Facts.
Not every single thing applies to me–for examples, I don’t have trouble staying in a chair, I can understand metaphors and non-literal phrases once they are explained to me, and I excelled in algebra–but so many things do that it feels like, at last, the explanation for my entire life.
I think that if I do have it, it’s a mild or moderate form, since it took me days, not years, to learn such things as riding a bike and tying my shoes. I learned them later than other children did, but I’m not sure if that was from lack of ability or because no one had taught me yet. As for swimming, however, I tried numerous times to learn how to do that during my adolescence, but failed. So I still don’t know how to swim.
Recently, however, I sorted through a bunch of school papers that I’d never thrown out. Though I graduated high school and college with a high grade point average and honors, I discovered many F’s and D’s in my middle school classwork, and many harsh comments from the teachers. In 7th grade, my French and Social Studies teachers seemed to hate me, while my English teacher seemed frustrated with me.
The problems I noted most: not including everything I was supposed to, not turning the work in on time, not organizing the information or the numbers correctly, no organization at all when I worked out math problems on the homework and test papers, poor legibility, incorrect answers, all things that fit this NVLD.
I might write little comments in the margins if a sentence on a homework or test paper was funny to me or reminded me of something I was interested in.
I also struggled with maps in 7th grade Social Studies: The teacher insisted the maps be colored with colored pencils, with diagonal strokes all in the same direction, not in the round and every-which-way strokes which were easier for me to do. I had a hard time filling in the names correctly.
I believe I had mastered grade school math by now, but struggled with middle school math, especially percentages and interest rates. When everyone else in high school seemed to know how to figure 10% of something (just move the decimal point over one place), I didn’t, until a teacher said one day, “Of course you all know to just move over the decimal point.”
I never did master interest rates, or much of anything in middle school math. I forget if I struggled in 8th grade math; I don’t even remember who my teacher was. But in 7th grade, I fought so hard to get my math problems right, only to check the answers in the back of the book and find they were all wrong. To be honest, I don’t remember if I went to the teacher for help.
Sometimes I wonder if NVLD is really a learning disability or just a different way of learning and looking at the world. But when I look at my old school papers, I see it truly was a learning disability, undiagnosed because it’s not well-known and kids with it can be academically gifted in other ways. (That’s explained in the articles I linked to, if you want to understand how that can be.) It still affects me because I cannot figure out such things as compound interest rates or why credit card interest rate charges don’t match what I think they should be. In elementary school, word math problems kept tripping me up.
When I was a small child, what age I don’t remember now, maybe two or three, my father was probably on a business trip, my mother was next door, and my brother was watching me. Somehow in my mind, I changed “next door” to “the store.”
I had drawn a picture I wanted Mom to see, so I went to find her–at the store. This was a little corner store, maybe a few blocks away, where we’d been many times, so I thought I knew the way (which, looking back, has been a common theme in my life when I’d get lost, not just as a small child but even as a 22-year-old adult). But somehow, I missed it, and ended up wandering the downtown streets blocks away, at night!
I understood the pedestrian lights, having seen them on Sesame Street, and was frustrated because they kept saying “walk,” then blinking before I was halfway across the side streets, so I’d run back to where I started from, making it very hard to cross the street. I didn’t cross the busy street running parallel to my sidewalk, fortunately. I don’t remember being scared, but I was annoyed at not being able to find the store yet. Shouldn’t I have found it by now?
Finally, a car pulled up next to me and a woman said, “Your mother sent me to find you.” Fortunately, she told the truth and wasn’t some child abductor, because I believed her and she took me home before the police even got there. (My mom says it was a male neighbor who found me, so I guess there must have been two people in that car.) My mom was relieved, while my brother felt terrible because this happened while he was watching me.
Back in the 70s when I first started Kindergarten, it was common for parents to let even younger kids walk to school by themselves. Even though the world was just as dangerous back then, at least in cities as large as mine (about 100,000), parents just taught their kids to look both ways, how to get where they were going, then let them go.
I’d wander the block all day long on my tricycle, but I don’t remember my mom being nearby–or anybody else’s mom being nearby them, either. After a couple of blocks, I’d begin seeing all sorts of other kids about my age walking to school; there were so many of us crossing over a certain yard across from the school that the owner complained. Almost nobody got driven to school, or from what I recall, even walked to school by their parents except maybe for Kindergarteners. Some kids got bussed, but they seemed to me to be the handicapped kids.
Apparently in those days, if you were old enough to go to school, you were considered old enough to know how to get yourself there. My parents tell me that after a few days of my mom walking me to Kindergarten, which was eight blocks away, I insisted on walking myself home, saying I knew the way.
Well, I got very lost. I kept looking for a large rock (used in landscaping) that I never saw, and didn’t turn on my street. Fortunately, a kindly old man (in an age when it was considered okay for a kindly old man to talk to small children) found me and directed me home.
I don’t recall what happened after that–did I know the way after that and walk by myself, did my mom take me, what?–but I do remember my big brother walking me home that year, after which he went to middle school. But soon I knew my way and–just a few days into Kindergarten, according to my parents, me barely five years old–I walked by myself. So I do believe kids are more capable than they’re given credit for in these paranoid 21st-century times.
But I had this dangerous feeling that the rule of looking both ways before crossing a street, didn’t apply to me. These were side roads next to a main road, so most of them probably had stop signs anyway, but it took a scolding or two from drivers and even from a girl my own age to convince me to be safe. This is why, when training my own child to walk to school, I didn’t let him go alone until I saw that he could follow the safety rules and also wouldn’t get lost.
I don’t recall having any one best friend, or many friends at all, in my first three years of school, before switching to the “smart” school. Maybe a few playmates, but not the same one all the time.
There was a group of kids who I wanted to hang out with on the playground, and kept trying to, but they kept shaking me off and getting mad at me. I couldn’t understand why. No, I wasn’t mean to anyone, so there was no reason I could point to that they would be keeping me out of their group.
I remember one of them making a comment that I was always writing (or was it talking?) about “Telle-oh and Sally-oh” (actually Telle-oh and Sally), two characters I had made up, best friends whom I wrote stories about all the time. I complained about her snark to the teacher, who told me to talk to the girl myself. I did, saying, I don’t always write about them: I write about other characters as well!
In second grade, one day I sat coloring along with the advanced reading group. I asked a question about the picture, held it up, and the other kids in the group went, “Eww!” I discovered that they all colored inside the lines, while I did not bother with that.
Also, my teacher often accused me of daydreaming because I wouldn’t raise my hand to answer questions while other kids did. The truth was, I didn’t always know the answer.
One day in the advanced reading group, she asked us a question about construction equipment. All the other kids put their hands up, but not me. She scolded me, saying, “Put your hand up, Nyssa! Put your hand up!” But I couldn’t because I didn’t know the answer. I knew virtually nothing about construction equipment, having little interest in it. It was a shame that she misjudged me like this, because otherwise she was a wonderful teacher, very special to me.
In third grade and maybe fourth, I would make all sorts of characters with my hands, and use these “hand puppets” to act out various stories. I remember doing this ever since I still slept in a crib. In the crib it was human puppets, but I was dissatisfied with the typical human-hand puppet, with two fingers for legs and three fingers held behind and the rest of the hand for the “head.” It didn’t seem like a real person at all, so I made my index finger the head (crooked over of course), my middle finger and thumb the arms (which touched at the hands), and the other two fingers the legs.
In Kindergarten, this human-hand puppet became a kangaroo, and I also made dinosaurs, which I liked to make scurry along the table until Melissa tried to smash one of them. Then the human-hand puppet became a tiger-kangaroo. (Don’t ask me where the name came from.)
As I walked to school by myself (Kindergarten through second grade), I liked to play games: I’d be a train, or ride a horse, or make up an entire story in my head about the Duck of Death (based on a dream, I think) or hand puppets which acted out the Convoy song that was popular at that time.
(Imagine: If my mother had driven me to school, like so many people do now, or hadn’t trusted me to walk to school myself like so many other little kids did in those days, I never would’ve had this elaborate fantasy life on the way, which I can still remember vividly. It probably took me a good ten, fifteen or twenty minutes to make the trek, plenty of time to act out stories.)
I also played with these hand puppets in the bath, since I didn’t have a lot of bath toys like rubber ducks or the like. (I would also make Barbie mermaids with washcloth tails.)
On Lost Island there was this girl with golden curls and a frilly, old-fashioned dress who kept going through a foggy wood, past what I perceived to be a huge brown spider’s lair, and she’d always run past it. The spider had lots of legs, looking more like a ball with some 20 legs or so than your normal spider. One day, Dr. Deathray threw her into the spider’s nest, and it jumped on her. In the bath that night, I played out that scene with my hand puppets.
(That show haunts me to this day and for many years I kept searching for that hotel, the little girl and the spider. No, it wasn’t Dark Shadows, which I first suspected back in the mid-90s. It wasn’t until 2010 that I finally found out what the show was, but I haven’t been able to locate episodes online to find out what was really going on, was it a spider, did it eat her up, etc. But if I ever actually find and watch that scene again, it’ll probably be completely hokey compared to the surreal and spooky, shadowy vision in my head.
(Just like when I saw The Bermuda Depths again after many years, and it was no longer the dark, Gothic, evil movie with the dreamlike cave, the evil turtle and the evil turtle’s evil, formerly human protegee who was like some unholy sea nymph. Rather, it turned out to be some hokey 70s movie with a turtle with a grievance, and a sea nymph who was human and not so evil.)
The hand puppet characters had gotten quite varied by third grade, including a figure 8, dogs, cats, one or two humans, etc. It was great fun, and in third grade, I began teaching them to a boy named Chad, who liked to sit with me on the bus and play with me at school.
But I soon discovered that my classmates and teacher found it babyish. Chad and I got mercilessly teased on the bus, as if we were lovers. So I began to stop doing the hand puppets in public, until finally I stopped doing it at all. I do recall once, when the fire alarm went off at school, throwing up my hand puppets, so in that case at least, it seems to have been a kind of nervous reaction.
There were other things that I would do that seemed perfectly reasonable to me at the time, but other kids would make fun of me or laugh, and/or even the teacher would give me a funny look. To them, it looked entirely different than what I was actually doing. These weren’t habits, just something I did once because it seemed like a good idea at the time.
In fourth grade, I believe it was, though it may have been third, my teacher decided to bring in a bunch of stuffed animals which we could have at our desks. I kept wanting to get one certain toy, which I think was a cat, or at the very least a puppet, because through it, I was able to talk to people.
During my early childhood, some people in the neighborhood (even an adult or two) kept accusing me of talking to trees. But I didn’t do that; I was acting out various storylines, made up in my head, while walking or rollerskating around the block.
My fourth/fifth grade teacher was always complaining about me, even though normally teachers loved me. She called me babyish for having to think before making a decision. This angered me. Why she called this babyish, I don’t know, since a person should think things through. Once, she said I would probably grow up to be a hermit. She didn’t seem to realize that this was not by choice. I’m not sure if she was referring to a person who lives in civilization but mostly stays in his/her house, but at the time I thought she meant one of those weird guys who go off to live in a mountain cabin by themselves. I had no clue why she’d think I’d want to do that.
In sixth grade, after one of our holiday or vacation breaks (probably Christmas), I came back thinking of Rose Cavern (Tennessee?). My family had just been to visit it, probably on the way back from Texas, and as an impromptu stop along the way. I loved the stalagmites and stalactites, and just the whole, romantic thought of a cave and living in one or getting lost in one.
In Art class, we were to draw a picture of something that happened on our vacation. So, of course, I drew a picture of the stalagmites and the stalactites, and a flashlight shining on them. I tried it twice. The first time, it didn’t look right, and the boy next to me said it looked like a spider. So I crossed it out and turned the paper over, then started again.
I had some artistic ability, but my people were very cartoonish, long and narrow; trying to reproduce exactly what I saw in my head was very difficult. I tried awfully hard to get the picture to look right. I drew the stalagmites and the stalactites the best I knew how: long, pointy columns. It wasn’t as good as a photograph, but I was only in sixth grade, my skills were not well developed yet, and I didn’t have a photograph to copy, just my memory.
I drew a circle around them to represent the beam of the flashlight; the rest of the cavern, not illuminated by the light, was black. I was finally pleased with it, as well as I could be considering the lack in ability that I couldn’t help, and turned it in.
A few minutes later, the teacher held up someone’s picture. “Look at this!” he cried. We all laughed, including me. Then he looked at it, realized it was the wrong side, and turned it over. I realized it was my picture, now that the proper side was facing the class, and that I had been laughing at the crossed-out picture on the reverse side of my own picture! I think he even had it upside-down before he turned it over, which may explain why I didn’t recognize it. I blanched with horror. “This student didn’t even try,” he said, tossing it in the wastebasket.
Note that I said before, “I tried awfully hard to get the picture to look right.” He didn’t mention my name to the class, though anyone near me would probably have recognized my picture, but he humiliated me in front of everyone for not being a perfect artist, and accused me of not trying at all when I had tried dang hard to get that picture as good as it possibly could be. I was probably too intimidated by teachers to realize that I could have told my parents what happened, and they could have complained about how their child was judged and sentenced as lazy without even a trial.
I could draw, better than many but not as well as the ones who are generally recognized as artists in grade school. I liked drawing comics and illustrating my stories. I couldn’t draw anywhere near as well as my brothers could. But I drew often and well enough that my people–originally funny-looking creatures with long necks–eventually looked realistic. I would draw pictures to help myself visualize main characters in books, especially historical fiction, in which I had to visualize not just people but fashions. I would look at the pictures while reading.
My handwriting was extremely bad until some time in, perhaps, 8th or 9th grade, when it finally became much neater and much easier to read. Occasionally I tried a new way of writing, more drawing than writing (as NVLD students often do), but it made the clarity even worse.
In third grade, I entered a MACPO school, which allowed gifted children to go at their own pace. All I can find on the Net with this acronym is an association for probation officers, but a MACPO school was basically a kind of Montessori school.
Unfortunately, since NVLD students often need structure, I did not do my classwork unless forced: I preferred to write stories. Various math concepts took me much longer to learn; I struggled with fractions and long division. In middle school, I still struggled with math most of all; I believe I was in the “smart” group for every basic subject, but really belonged in the smart group only for certain subjects.
It is said that kids with Asperger’s and NVLD are often hygienically challenged. I did have trouble in my childhood, not understanding the importance of daily bathing or brushing my teeth. Even other kids teased me for it, so you can’t say I was just being a kid. My grandmother and mother got upset with me on a family trip, somewhere around age 10 or so, because I wasn’t yet showering daily and didn’t see the need for it.
But I turned it all around by age 13. I began bathing and shampooing daily because of my oily hair and skin; I became so diligent at brushing and flossing that I was praised by men, women and dentists; I used creams on my face; I became so clean, and so desired to be clean, that some people started poking fun at me for being too clean. I was quite surprised to go to college in Wisconsin and find people who showered or changed clothes only every other day, or only once a week. (This wasn’t common, as far as I know, but I knew several such people who didn’t understand why I thought that was–odd.) So you see, all your NVLD kid needs is to understand the importance of being clean.
In high school, I realized that I had to do my homework on time. I also took classes more suited to my abilities, whenever possible.
Gym was always a trial for me because I had trouble doing anything athletic. Only calisthenics and other such non-athletic things went well. Though I could make a basket pretty well because I often shot baskets at home with our garage hoop. I sucked at baseball, couldn’t hit well, couldn’t catch. The very name “kickball” made me cringe.
I hated volleyball, with all its movement and confusing rules. I could not tell when a ball was headed my way, and could not hit it very well. My teammates screamed at me for missing the ball, when I had thought it was nowhere near me. Out of pent-up frustration, I lost my temper and yelled back at them, uncharacteristic behavior for me.
When we divided into teams to play competitive basketball, I did not know what to do when, even though the rules were probably explained; I couldn’t “think on my feet” or react to where the ball went or block.
I couldn’t run far or fast. Once, my gym class in elementary school was tested for how far and fast we could run. One of my friends advised starting out slowly to improve endurance while others were flagging. I did that, but rather than out-endure everyone else, I ended up being the one lagging behind everyone else, finishing long after everyone else.
I still can’t catch because, rather than put out my hand, I get scared and move away from whatever’s coming at me. So once the one-year obligation was completed, I no longer took gym.
After failing honors biology, I took regular classes in science. In math, I took specialized subjects–algebra, geometry, algebra/trigonometry–but regular, not honors or advanced.
I excelled in regular classes. (The exception was chemistry, where I averaged a C, got a D on the final, and got a final grade of C, but nobody seemed to do well with that teacher, and even the good students hated him. He made sarcastic comments to other classes, not just mine. I think he hated teaching.)
I’m not sure why I was recommended for honors science classes by my 8th grade science teacher: My grades in middle school math and science were awful. (I was also quite frustrated because I wanted to know why, not just how, things worked as they did.)
In high school, I had good teachers for algebra and geometry, who explained the problems step-by-step and made them make sense, setting the stage for me to do well in algebra/trig. On the other hand, I took the most advanced English course I could, and excelled in that as well. So you see that there was a big difference between my ability in math and my ability in English, that while I could get As in AP English, I couldn’t handle anything above regular math or science.
In college, I also did well, especially now that I could ditch the math courses and only needed one science course. I hated school up until high school, when I began to actually like it, for the most part. I loved college.
However, all through my school years I had trouble paying attention during lectures. Even if I was interested in a subject, the slightest thing could remind me of something else and take my mind off on its own tangents, so that I’d miss something I had anxiously wanted to hear. It was even worse if I wasn’t interested. I often had to find things in my textbook to get more details.
It’s common for kids with NVLD to have trouble taking notes during class lectures. It’s hard to sort out the important points from things that are merely interesting, since to an NVLD kid all the details seem important. And while you’re writing, the teacher moves on to another point, which you miss.
Yet taking notes is a must during class lectures. I don’t know if we had miniature tape recorders in those days; maybe I never heard of them, or never thought of using one. I loved it when teachers handed out study sheets or class lecture outlines.
But because this usually did not happen, as a freshman in high school, I developed my own system of shorthand symbols to help me take notes more quickly. Some symbols came from the Martian alphabets I’d invented in middle school. Some were borrowed from the various disciplines, such as the three dots used in geometry theorems for “therefore.” Many were based on what image seemed to fit the word, such as a right-pointing arrow for “to” or a square (box) for “in.” I’d tailor the shorthand for each class (or, after college, for each job), since each had different jargon.
My sophomore English teacher caught a glimpse of my shorthand one day, asked about it, and I explained it. She was impressed. I noticed some kids around me giggling as if I were weird to invent such a thing. But it was one of the many compensations I developed for my academic survival.
I still use the shorthand occasionally. It has evolved over the years. For example, the “at” symbol was taken from the Red Baron’s bullet holes in Snoopy’s Sopwith Camel. You know, “rat-a-tat-tat,” “at.” But now, I use the symbol @ which is used on the Internet and has become ubiquitous in American culture around the turn of the 21st century. I also use “u” for “you” and “ur” for “your,” which kids were doing on the BBS’s back in the mid-90s and kept on doing as the Internet and text messages grew in popularity. I also have to concentrate very hard to catch all the points I need to write down, whether in a sermon, dictation, documentary, or whatever.
Considering the state of my school papers in 7th grade, and how long that school year was, I was probably depressed all year. I wasn’t usually depressed in high school or college, except during certain periods, such as after a breakup. Depression is a common state for NVLD kids.
I had an awful time trying to tell which boys were or were not interested in me. I’d think one was passionately in love with me, but when I tried to go out with him, he’d reject me. I’d think the same about another, but he’d never ask me out. Meanwhile, I had a friend who seemed to just like me as a friend, only to find years later that he had been passionately in love with me.
One evening, I went to a Petra concert with the Campus Life groups from city schools. As usual with Christian bands, they did an altar call after the concert. At one point during the altar call, the other kids in my group got up and left with the leader, but I figured they were all going up to the altar call. Altar calls were for the unsaved, not me, so I waited for them to return. They never came back, and I was stranded for some time until I found a pay phone and called home. I can only imagine that, since the other kids knew what was going on, I somehow misunderstood because of my NLD.
As for other traits, I have always been clumsy, often forgetting how I got black and blue marks on my legs, or running into doorknobs or walls or tables or the edges of open doors.
If I have to read and understand a complex text, such as theology, I have to read it slowly with no distractions. If I’m not interested in a subject, I may not comprehend it at all. Oftentimes I’ll get through a newspaper article, for example, and have no clue what I just read.
But I do love to read. As a teenager, I would say that I loved to read the novel version of a movie or Doctor Who episode I had watched, so I could “find out what they’re thinking.” The book would help me to understand the movie better.
New situations have always scared me or made me freeze up, unable to do anything because I don’t know what to do or say: job interviews, driving situations, dealing with a customer with a problem (while an agent assistant) or an agent (while an insurance clerk), or social situations. This is very similar to and probably related to selective mutism, which is, essentially, part of extreme shyness, and can be caused by anxiety over unfamiliar situations.
Memory. Memory for tactile and visual input is poor. Relative deficiencies in these areas tend to increase over the course of development, except for material that is programmatic and overlearned (e.g., spoken natural language). Memory for nonverbal material, whether presented through the auditory, visual, or tactile modalities, is poor if such material is not readily coded in a verbal fashion. Relatively poor memory for complex, meaningful, and/or novel verbal and nonverbal material is typical. Differences between good to excellent memory for rote material and impaired memory for complex material and/or that which is not readily coded in a verbal fashion tend to increase with age. p. 158, Practice of Child-Clinical Neuropsychology, Byron Rourke
I do have trouble retaining much of what I read. I can get through an entire novel but forget parts of it. Textbooks are especially hard to retain. It caused a lot of trouble when taking tests on history, for example, so I’m not sure how I did so well in World Civ–maybe because the tests were essay questions.
I learned how to drive 22 years ago (1990), took driver’s ed, got a license, drove to the next county to work for two and a half years, still keep my license up-to-date. But that did not get rid of the fear.
In fact, the fear was reinforced with my first car, a beater with all sorts of problems: stiff gearshift, power windows which didn’t behave in cold weather, leaky oil, constantly needing to go to the shop and get more work done. It would get worked on, and I’d drive it to work only to find some new thing wrong with it, like the time the steering wheel started shimmying at high speeds.
Another time, the darn thing just suddenly started slowing down on the highway, I couldn’t get it back up, and I had to pull to the side, check oil, etc., having no idea what was wrong with it, then it just started working again. (I’d give more detail, but that was some 15 years ago or so now.) [Update 6/18/14: Oddly enough, I found out through the Left Behind series what happened: engine lock. See this post for more.]
With a drive of nearly an hour across a two-lane highway to get to work, in all sorts of weather (such as some pretty nasty blizzards), watching for deer and tractors, and occasionally getting scared by seeing road work ahead (detours terrified me because I could get terribly lost), I was constantly afraid of the thing breaking down along the way. My husband didn’t understand until he had to drive the thing to another state one time, and then he realized just how bad a car I had.
But it wasn’t just that. I had a terrible time maneuvering the thing, such as around curves and when making turns, and nearly got into accidents with it because of that. I almost went off the road on a very curvy and narrow rural road. I don’t think that was the car’s fault.
I got lost on the way to an interview in the next county. That same day, I also got terribly lost when going to get my stuff from college and take it to my new apartment. I should’ve known the way, having ridden that way many times over the past four years. But I got so lost that I was terrified.
Now, some people with NVLD can drive but can’t ride bicycles, though they might have navigation problems. I learned late, but can ride a bicycle just fine.
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 stupid mistakes while driving that I sometimes feared for my life, why did I have so much trouble maneuvering the car into a car wash that I swore off automatic car washes 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.) I knew introverts and shy people who didn’t have these problems!
Over time I lost the rubber legs from driving home from work, as I grew more familiar with driving that route, and knew what traffic signals/lanes to expect where. But the thought of driving anywhere else filled me with dread and anxiety, actually gave me panic attacks at times. I was already afraid of driving before I started, but my lack of ability to do the maneuvers or find my way or obey the signals or deal with unexpected circumstances without a great amount of difficulty, even when I’d been driving to work for a couple of years, made me even more convinced that I should not be doing it, for everyone’s safety, no matter how much it has hamstrung my ability to do much of anything that requires leaving the house.
In driver’s ed, I did well on written tests, so even though I had trouble getting through the reading every night (which took me hours), I must have been retaining the laws–probably because of lectures the following day and in-classroom quizzes. The teacher told my parents that I knew the laws.
But the driving instructor, on the other hand, only grudgingly gave me a waiver of the state’s driving test, after I took the class’s final driving test twice and passed the second time. So even though some people (such as my ex Phil or my brother) would say, “Don’t you have a license?”–that wasn’t really enough to make me comfortable or competent behind the wheel.
This was long before the days of graduated licenses or more stringent laws on required hours of driving instruction, but the instructor never used one of those driving simulator machines before putting us on the streets. He just spent fifteen minutes teaching each of us to drive around the parking lot, then after that took us straight onto the busy streets around the school. This was fine for the two guys in my car who had already been driving illegally, but not for us two girls who had been following the laws. (Oddly, those two guys did not get waivers, but probably because they were cocky and liked to make fun of pedestrians, which annoyed the instructor.)
When I took driver’s ed, we were supposed to fill in a map of street names and other landmarks while in our assigned car and waiting for our turn to drive. I did very poorly on this map.
My car’s instructor took our permits away (to make sure we never showed up without them), so I got very little practice. He was always hitting his brake when I drove. I was frustrated to no end because he’d tell me to go, I’d look and see cars coming, hesitate maybe a few seconds, start to pull out–and he’d hit the brake, saying I waited too long.
Which I most likely did, but it demonstrates that I had trouble figuring out when it was safe to turn, how far away the cars were, etc. I’m not blind, and don’t have any other visual problems such as lack of depth perception, color blindness, tunnel vision, etc. But I do have trouble determining how soon the cars will bear down on me, so people (in other cars or in my own) have gotten frustrated with me as I sit and wait.
This also causes me trouble crossing streets on foot, though you could argue that because this has made me especially cautious, it’s also kept me alive. It has also made me more compassionate with other drivers, because it is my philosophy (and what I will tell my son) that only that driver can tell if it’s safe to turn or not, not the people behind who don’t see what he sees.
I’ve always had trouble explaining why I don’t want to drive: People usually think I should just be able to get in the car and drive. One ex-boyfriend, Phil, talked down to me like I should be able to just get into the car and drive, and he’d yell at me for not doing it. He’d refuse to drive me someplace, even when I had no other way of getting there. He said he wasn’t a taxicab. As Dr. Phil said on one show, if you try to do “therapy” by making a person “face her fear,” you’re really just being a bully.
It didn’t help that with my first car, I was trying to learn stick on an old car with stiff gears. By the time I got a decent car, the damage had been done. My work commute became familiar, but when I stopped working at my first job, I started driving less and less until, now, I don’t drive at all. Once, I planned to drive myself to a party when hubby was out of town, but got so panicky that it affected me physically and I had to stay home. It helps to have someone with me or in the car ahead of me to help me navigate, but without that, I don’t even want to try. I don’t want to kill anyone, you see.
My hometown was a scary city to navigate, because not only did I have to concentrate very hard just to do the driving halfway decently, but there were so many cars doing unpredictable things, and so many lanes, so many signs, so many one-way streets, so many twists and turns to get to a destination.
When I moved away from home to a much smaller city in another state, there were different traffic laws, lights which would turn to blinking red or blinking yellow after 10pm–even streetlights were positioned differently over the intersections.
I was confused by many things: I had an awful time parking. I did not know that it was illegal to turn left on red–I could swear the driving instructor said you could turn left on red, but you had to do it very carefully. [Update: Actually, in Indiana, left turns on red from one one-way street to another are legal, so maybe that was the context of my instructor's words.] I had the rules for four-way stops backwards (that it goes “to the right”–i.e., the person on the left goes first and then the car to the right of that car, counter-clockwise–rather than the person on the right, clockwise).
The driver behind me would see an empty space for turning, where I saw a wall of cars–hence, I got honked at a lot, which startled me and upset me for hours afterwards. I often tried to use maps, but they made little sense to me, I could not retain what I saw, and I got so confused by whether to turn right or left, that I often got terribly lost. Getting lost frightened me.
I had no clue why I had such a hard time driving, and could only think that I should just get off the road. But of course, even though people say bad drivers should get off the road, if one does so, they chide him for not driving when “everybody has to do it.”
Even before I started driving, cars scared me: I was fine as a passenger, but I always crossed the road extra carefully. One year, I had to cross a busy street to get to my bus stop–yes, I know, poor planning on the school’s part. The kids would stand at the bus stop and jeer at me for not crossing, saying I had plenty of time, when all I saw were cars coming right at me very quickly. Trying to turn as a driver felt like that all over again; the honks were the jeers of my classmates.
I walked to my next job (1999-2003), only ten minutes away, walking in all sorts of weather despite having a car. It was wonderful.
Fear of driving is more common than you might think in this car-obsessed nation. But while many people can overcome it through baby steps and practice, I still have mine–despite driving from one county to another every week day for two and a half years. Too much happens at once, I get lost easily, I have to navigate while following road rules and trying not to run into anything, and unexpected situations cause panic.
It is not a phobia, or irrational fear, if it is linked to NVLD; maybe it’s better for everyone if I don’t drive, at least until I find someone who can teach me how to compensate for my weaknesses while driving. The last letter here sums up my feelings quite well:
Also, when I did drive, I was always scared that something would go flat, the battery would go out, etc. etc. I was always scared when I drove and that is not good when on the road. I found that by taking myself off the road, that I am being considerate of other people and their lives.
However, it is very frustrating when you “take yourself off the road” and people accuse you of immaturity or not doing what you need to do as an adult. (Maybe if they saw you drive, they’d feel differently.) Yet another time you will hear them complain about “bad drivers” and people who shouldn’t have been given driver’s licenses!
There are times when I see how it can affect my life to not be able to drive, especially if something were to happen to hubby. But I don’t feel I have a choice.
Fortunately, I’ve discovered that trouble with and fear of driving is common with learning disorders, as is being misunderstood by “normal” people. Lots of people, men and women, are afraid of driving; I don’t know how many of them have learning disorders, but I have found some of them in real life and on the Internet. It makes sense, when you think of how lethal a car can be, that some will refuse to do it despite the inconvenience of not driving.
Even Barbara Walters–a wildly successful and well-respected woman–is afraid to drive. (She said this on Oprah one day when I just happened to flip on the program. The episode aired on September 16, 2004.) Quincy Jones also does not drive. Shep of the Three Stooges also was too scared to drive. It also helps to know that people with NVLD can eventually master driving, so if I must do it again, I may still be able to do it. ”Some will drive, some will not” (source).
My terror at driving never left, except after many months of driving to my first job, I finally felt comfortable doing that–as long as I did not have to do a detour. Detours meant I could get hopelessly lost. If I could follow a car, I’d be okay, but not alone. My main route was torn up for quite some time, and various detours would be set up. These detours confused me considerably, and I often found myself quite lost, unable to read the map.
When driving, I’d make various errors that seemed to make sense at the time, but someone would honk and I’d feel like an idiot for not realizing that was dangerous or seeing what was really going on with the roadway. A curved, two-lane, one-way street appeared to be becoming one lane, so I desperately tried to get over, one day on a detour. The cars honked; I soon discovered the lane was not ending at all, but was an optical illusion.
One day, I thought I could drive to my interview in the next county, then to a fast-food restaurant for lunch, then to my old campus to get some stuff I’d left in storage….This is when I got turned around and was an hour late to the interview, because I kept misinterpreting which direction I was supposed to turn from Peters onto Johnson.
I kept getting confused on which way to turn onto Johnson St. I studied the map and thought I now knew exactly which direction to go on Johnson St. But I still went the wrong way for quite a while before realizing my mistake. But I got there, explained what happened, and still got the job.
I then went to my campus in that county to pick up some belongings I had stored there. I figured I’d been on that road so many times that I knew it like the back of my hand. But I ended up hopelessly lost, scared, afraid I’d run out of gas and die on one of the back roads I was wandering.
When I did find a gas station, I couldn’t even get around without hitting the building. I asked for directions and got back on the highway, finding my way all right after that.
There were other things: A time my then-boyfriend, now-husband, asked me to drive to a place on 4th Street to get an extra key made. I never did find the place, and went back home, distraught and scared.
I tried to use an automatic car wash: First the automatic windows froze in the frigid weather on my 10-year-old car, and I couldn’t get them back up before my ticket expired. Then I couldn’t get my car centered on the risers on the ramp, so the car wash didn’t work. An attendant finally had to help me get my car in the right spot.
I went home and cried in mortification and devastation to my fiancé, wondering why on earth I had so much trouble with a car wash. He didn’t understand it, either, but fortunately this fiancé did not judge me like the first one, Phil, did. Instead, he showed me a different, manual car wash where you simply hose down your car, so I never drove through an automatic car wash again.
Other things happened that led to accidents, or my judgment was somehow so screwed up that I didn’t know what to do after an accident. I felt like an absolute freak, because my brain just wouldn’t let me act like “normal” people in these situations, and kept failing me again and again when I was supposed to be so smart.
I had so much trouble with driving that I finally decided I was too incompetent to keep putting myself and others at risk. Unfortunately, that decision has led to much shame because people don’t understand why a grown adult can’t do such a “simple” thing as drive a car, and think it’s some sort of immature refusal to do what must be done. (At least, that’s what it feels like to me.) I couldn’t understand it, either, and wished people would stop judging and just let me be a non-driver.
Phil stayed a summer with my parents and me. He took a few jobs while there. He chided me with, “How could you not know your way around the city you’ve lived in all your life?” I shot back with, “How am I supposed to know my way around it when I haven’t even been everywhere in the city?” By the end of the summer, he boasted that he knew his way around the city much better than I did.
Google Maps has been a Godsend: Not only do you get a map right in the area you need, but you get routes mapped out for you, verbal directions, and a photo of the intersections. I like to print them all up to ensure that I find my way. I don’t drive anymore, but do often read the directions for my husband when we’re going someplace. That is, when he hasn’t already looked at the map once and memorized where to go. [grumble]
Recently, however (summer 2012), I was able to buy a new bicycle. Here is new freedom! For much of the year, until the snow falls and the ice forms, I can ride my bike to all sorts of places that otherwise would take an hour to walk. I can ride it to church, since my husband goes elsewhere. I can ride it to vote, now that our polling place has been moved from its convenient spot next door.
In that rare case when hubby’s not able to take me someplace I need to go, I can use my bike, call a cab (we have several different cab companies at reasonable rates in this town), or use the bus (if it happens to be running). The bike is also a lot of fun, now that–after 20 years–I have gotten over my rustiness. I got a simple one, no gears, no different speeds, just push back on the pedals to stop. I never liked ten-speeds, never wanted to deal with that. I like simple machines that I can understand and operate simply. Unlike a car.
My first day of college, I had trouble finding my way around, even with a campus map. I had an awful time that evening finding my way from a social event at the gym that night, to my suite–only to find (to my amusement) that it was right next door with only a parking lot between them.
Some things I pick up quickly, such as computer skills, while some things need more practice, such as changing a baby’s diaper or doing insurance policy changes. But once I master a routine task, I do it well, such as housework, filing, or figuring out a grocery list.
I don’t do so well when something unexpected happens, or I meet new people. You need to become familiar to me before I can talk to you easily, and even then I don’t always know what to say. Some people have misunderstood me and considered me stand-offish or shifty or rude, when really I’m just quiet and shy.
My husband has noted that I’m methodical: I like to know how something is going to end before I start it; if I don’t, I tend to freeze up and stand still rather than risk things going wrong. I like to know what’s going to happen and have a good idea of how I’m going to deal with it. I need plans, routines, schedules. If I don’t know what’s going to happen, if something unexpected happens, if something disrupts the routine, I panic. (One reason why driving is so stressful for me.)
I even prefer to be with people I’ve already spent much time with, and don’t much like meeting new people. But I’m not totally inflexible, either. An explanation of such matters, and how NLDers often end up isolated and withdrawing (like me), is here. My fourth-grade teacher said I’d probably become a hermit. I couldn’t imagine becoming like those old guys in movies who live alone out in the wilderness. Still, the modern-day use of the word does unfortunately seem to fit–but not because I want to be a hermit.
Sometimes I am simply unable to improve certain matters of job performance; for this reason, I do not always get the good raises.
I don’t like wearing jeans, turtlenecks, sweaters, or anything else scratchy or tight. As a small child, I had to wear tights every Sunday; I couldn’t stand the things, which were very itchy, and would take them off at home. I couldn’t stand the mid-80s fashion craze of extremely narrow hems on jeans, since I struggled to put them on over my ankles every morning. Because I didn’t know what was going on in fashion, I also had no idea why all my new jeans had narrow hems.
At the same time, I had three sweaters which–since my mom washed the clothes every few days–I was able to wear twice a week to school. Two of them were soft and I could stand them just fine. But the third–acrylic–began to bug me so much that I would take it off when I got home. I forget what I put on instead; maybe a nightgown. It itched like mad, and I couldn’t stand the hems of the sleeves, where the knitting ends. So I only wore it on Wednesday so I would only have to wear it once a week. Other kids noticed that I always wore it on Wednesdays, but I just couldn’t stand to alter this to please them.
Ever since then, I’ve resisted wearing sweaters. In the late 90s I was given a shirt as a gift which I believe was a tight-woven, soft sweater, and I tried wearing a shirt under it to minimize the itching, but I still could barely stand it.
In the mid-90s, I bought a beautiful velvet shirt, but couldn’t stand to wear it because the sleeves were so tight I couldn’t even roll them up.
I resisted wearing pantyhose as long as I could, preferring to wear socks, until I realized that no other teenage girls my age wore socks with their dresses. I couldn’t stand the feel of pantyhose all along my leg, or the way they feel against my underwear, so I was happy to discover knee-high nylons. They felt almost like the trouser socks I preferred, I could get them in white or black instead of that icky “nude” color, so they were a good compromise to wear with my normally long skirts.
I have always preferred knee high socks (though I soon discovered in high school that people think they look funny with shorts) because I didn’t like the feel of short socks on my legs, except when I’m wearing shorts or capris. Then it’s too hot and funny looking to wear high socks, so I wear little ones. But for pants, nobody could tell how high my socks were, so my own comfort was the only consideration. It was even better when trouser socks first came out, because they’re light and soft and stay put instead of always slipping down.
But I had no idea until maybe my mid- or late-20s that you were supposed to match your socks with your pants, or that you weren’t supposed to wear high socks with the short pants that came in fashion around that time, which might explain some of the funny looks I got from other women. (Guys didn’t seem to care if I committed huge fashion don’t’s.)
In college, two guys tried to lecture me on how I should dress, because I didn’t “dress to impress,” as one put it. (That one also said I was the only girl he knew who didn’t do this instinctively. I guess he never met my roommate?) But I had been complimented by girls on my clothing choices, and liked wearing pretty things, so I don’t know what he meant by this.
In any case, rather than follow current fashions, I wore what I could stand: soft fabrics, loose waists, no sweaters, and (by high school) no jeans. I also had a strong sense of modesty. I didn’t mind showing off curves, but I had to be comfy when doing it. And no way would I show much skin, except for my arms or a modest pair of shorts.
Even when I did know what the latest fashions were, it made no difference if I didn’t like how they felt, such as the leggings trend in the mid-90s, when all the ladies at my first job wore leggings or stirrup pants, but I couldn’t stand how they felt on my legs.
I’ve never liked bellbottoms, and stopped wearing those rough jeans in high school, so I’ve been avoiding most current pant fashions for the past 15 years. I wear simple, timeless pants that aren’t tight around the waist or the legs–even if I have to go online to an old ladies’ store to find them! I save my fashion sense for my blouses, which are usually more comfortable, as long as they’re soft and the sleeves aren’t tiny and tight.
I’m constantly tugging at my clothes–pants waistband, shirt, sleeves–because they’re uncomfortable if they don’t stay where they’re supposed to. I can’t imagine wearing low-rise pants, or even mid-rise, because they’re not around the waist where they belong.
When I get into bed, I have to tug my nightgown into place because it’s bunching up here or there, or tugging so that my arm’s going to feel sore. The sheets have to be in just the right places, too, so I don’t get cold or so I can muffle noises. It’s not so bad when I’ve been sleeping for a while and everything has gotten comfortable right where it is, but when I’m first going to bed, anything in the wrong place is annoying.
I don’t like loud voices, which annoy me and make me yawn, especially when the person is sitting right beside me. I can’t stand the high volumes at clubs. Occasionally, somebody will say something but it doesn’t register in my brain just what they said, even though there is no problem with my hearing. A moment or two later, it seems to “echo” in my mind and then I know what they said (similar to Central Auditory Processing Disorder, or CAPD?).
I can’t stand the taste of chili powder or chili beans.
I don’t seem to have a problem with face blindness, though there have been times when I saw someone out of their usual context, didn’t recognize them, then thought later, “Wait, was that–?”
As a child, I often got annoyed by people asking, “What’s wrong?” when nothing was wrong. As an adult, I often get annoyed by, “You’re so quiet” or “Smile!”
From NLDline comes this list of NVLD traits:
The assets include early speech and vocabulary development, remarkable rote memory skills, attention to detail, early reading skills development and excellent spelling skills. In addition, these individuals have the verbal ability to express themselves eloquently. Moreover, persons with NLD have strong auditory retention. Four major categories of deficits and dysfunction also present themselves:
- motoric (lack of coordination, severe balance problems, and difficulties with graphomotor skills).
- visual-spatial-organizational (lack of image, poor visual recall, faulty spatial perceptions, difficulties with executive functioning* and problems with spatial relations).
- social (lack of ability to comprehend nonverbal communication, difficulties adjusting to transitions and novel situations, and deficits in social judgment and social interaction).
- sensory (sensitivity in any of the sensory modes: visual, auditory, tactile, taste or olfactory)
- *definition of executive functioning: Neuropsychological functions including, but perhaps not limited to, decision making, planning, initiative, assigning priority, sequencing, motor control, emotional regulation, inhibition, problem solving, planning, impulse control, establishing goals, monitoring results of action, self-correcting. From http://www.behavenet.com/
Some things were far worse for me as a child, such as handwriting, schoolwork and social interaction. There are many things I’ve picked up over the years, more slowly than someone with a “normal” brain might pick them up, but I picked them up nevertheless. Many NVLD deficits can be compensated for, either through lots of practice or doing things in other ways than a “normal” brained person would do them.
One way I compensate is through schedules. I had terrible organization of my desk and room growing up, but when I went off to college, I decided I would be a good roommate. I wrote in my day planner when to dust, when to do laundry, when to dustmop the floor, when to wash sheets, etc. I also forced myself to be more organized.
My boyfriend Peter seemed to find it funny that I alphabetized my cassette tapes, but it kept them in order and helped me to find them easily. Nowadays, I still alphabetize my music, and as a housewife, my daily schedules are more complex.
I have learned to be somewhat flexible with the schedules when necessary, though it can make me anxious when a change is forced on me: a holiday falling on a weekday and disrupting that day’s normal routine and laundry, for example. My husband loves my schedules because they keep the house and the laundry clean. Some people with NLD stay messy; some become very organized. I don’t like being forced to stop something I’m working on in order to do something else.
Whether someone grew up knowing they had a learning disability and received special education services, or they have struggled with learning difficulties without ever knowing exactly what their problems were, they are probably now in command of a number of techniques that make life easier. Over the years, they have figured out ways to get and keep track of the information they need, and developed systems for helping them to get and stay organized.–http://www.learningrx.com/nonverbal-learning-disabilities-for-adults-faq.htm
It helps a great deal to have a teacher or counselor who can tell you the normal way of doing things and teach you compensations: Many children who were diagnosed early are now excelling at life and school, while many NVLD adults who were not diagnosed until much later, still struggle.
Though I remember very little about the sessions, I do remember seeing a psychologist in late elementary school; this did help me somewhat with social situations. We must have done more than sit and talk about my life; the psychologist must have given me social tips. When I visited the school counselor in college, she kept wanting to talk about my shyness when I wanted to know why I had so much trouble extricating myself from my dysfunctional relationship with Shawn. I did feel stronger inside after seeing the counselor, but she didn’t find and fix the basis for all my social problems and tendency to end up with guys who were all wrong for me, since the following year I ended up with an emotional abuser, Phil.
Apparently psychotherapy isn’t really all that helpful for NLDers if it expects them to have insights about their life, rather than giving them concrete tips. But in those days, nobody had heard of learning disabilities other than dyslexia! If you did well in school, that was that, and if you had social problems, you were on your own (except for the occasional baffling chiding from teachers or peers). On February 24, 1992, when I was 18, I wrote in my diary:
First, for so many of my school years I felt ostracized. I made friends easily [or so I thought, though looking back I didn't], but still people would tease me about the way I walked, or being weird, or playing with my hands until about the end of the fourth grade, or whatever. Even my best friend from down the street ended up treating me bad. This is probably why I closed off around fifth or sixth grade and had to go to a psychologist (who, by the way, was the first person to hypnotize me). I’ve never fully recovered from a sense of weirdness, even though I’ve made great progress. I actually felt “not weird” for a time senior year, until those guys in art class shot me back down and humiliated me. I still get this sense of insecurity every once in a while.
Second, part of the reason for my “ostracism” was probably the type of child I was. I’ve read about it in the newspaper. There’s a type of child that never picks up on all of the rules of body language, and their peers think they’re weird because they can’t relate to each other. That was me. I was, in a sense, in my own little world. I never even learned the basics of social interaction and common courtesy, which I didn’t start to pick up on until I was going to my psychologist.
Even saying “hi” was foreign to me. I finally got myself saying “hi” and eventually “bye” whenever someone said it to me, but I’ve only recently been able to start saying it first. I’m still studying my peers to see what you do in certain situations. Also, just ask my mom, she always had trouble getting me to say “thank you.” As I said, I was in my own little world, and I didn’t learn these things, not even when my parents tried to teach me. I’m still often uncertain what to do.
Third, I don’t always know why I do things. I don’t know for sure why I refused to go up to [a friend's] house that night [when I was with my boyfriend]. I think maybe my subconscious was afraid her parents would think, “What in the world are you doing out at this hour? And who’s he [my boyfriend]? [She's] not even here.” [Actually, it's quite simple: I figured social conventions would be against me showing up late in the evening unannounced, especially if she didn't know I was in town. Here, the boyfriend was probably the one in the wrong about social rules.] …
I don’t know for sure why I’m so afraid of driving. Maybe I’m just afraid of cars; I don’t know. I also don’t know for sure why I didn’t want to go “midnight sledding” with my friends last Friday night. I guess I’m just not one for spontaneity. If I’ve already planned or expected my day or evening to go one way, a sudden change is unwelcome, no matter what it is. If it’s a dance not announced previously, I probably won’t go. If it’s a change of plans for a date, such as rollerskating instead of the movies, I’ll probably choose the original plan, no matter how much I like rollerskating. I don’t even know why this is. Maybe I just like to know what’s going to happen.
This is who I am, and you’ll have to take me this way.
I eventually forgot about that newspaper article, until I discovered NLD in February 2000 and recognized myself, everything about my life finally explained.
Every NVLD person is different; I do better in some deficit categories than in others. For example, I do have some artistic abilities (though my drawing is simple and focuses on people and their clothing), I have a good sense of humor, I never had trouble staying in a chair, don’t have to talk my way through every single thing I do, don’t have to concentrate just to walk through a room, can keep my words in my head when I do talk myself through something, and am capable of visualizing.
But from what I’ve learned about how other people see the world, my visualization is impaired, just as my vision is very near-sighted and I must wear glasses to drive. To compare visualization with sight, some NVLD people are “blind” and can’t visualize at all; I am “impaired.”
I can see some streets clearly in my head, but most are fuzzy, even though I’ve been living in the same city for 17 or 18 years. I couldn’t tell you how to get to the local Home Depot, even though I’ve been there many times. I’m terrible at giving directions; in most cases, I need a map in front of me, or I need to actually be with you as you go down the street to find the place, even if I’ve been there many times. Even then, there’s no guarantee I can get you there; if I can, I’m jubilant. Even if I’ve been taken somewhere many times, I easily get lost trying to go there by myself. I may remember a few street signs or landmarks, but not know how to get from point A to point B.
When I read a book, unless I have pictures of the characters, or have seen them in a movie (such as the Harry Potter or Lord of the Rings series), they are fuzzy in my head. They are basically balls of light or white clouds, doing the actions and saying the words. In my teens and early adulthood, I liked to draw pictures of the characters in classic novels so I could visualize them, their clothing and hair.
Sometimes, if the author has made a character especially vivid, such as in Diana Gabaldon’s Outlander novels or Jean Auel’s Earth’s Children series, I can “see” the character very well. But the other characters are usually fuzzy. I often like to see a movie of a book after reading it, so I can “see” the characters and actions. Conversely, after seeing a movie or a TV show, I like to read the original novel or tie-in novelization to find out what the characters are thinking.
When given multi-step directions, I try to remember all the steps verbally, but this is too much at once. So I don’t remember them, and have to watch other people first to see what they do. (This is very similar to selective mutism, in which a person watches others do an activity before feeling comfortable enough to join in.) Until very recently, I had no idea that other people remember such directions by visualizing themselves doing each step. I don’t do that.
I have trouble focusing on multi-step directions of any kind, and often forget each step right after it’s been told me, from game directions to folding palm frond crosses to driving directions. They have to be written down for me to grasp them. But once written down, I can learn them very quickly.
I also have trouble focusing or concentrating on things I read that don’t interest me, so I often have trouble remembering anything I’ve read in newspaper articles, Bible chapters, political walls of text written on forums, boring books, textbooks and the like, even moments after I’ve read them. While a topic that interests me, I can read, understand and remember, such as a blog about religious issues or a novel.
In January 2011, I posted this on an NLD forum:
This evening, while watching the latest “Doctor Who” (A Christmas Carol), my husband and I saw a commercial for a new movie called “The King’s Speech.” There was narration, but it was more along the lines of hawking the actors and the great acting than of actually explaining the story. Not the nice long trailers you see in the movie theater, but a truncated version. All I got out of it was, two guys in old-fashioned, obviously wealthy suits (one must be a king), and Helena Bonham Carter.
I remarked at the end, yes it’s critically acclaimed, “But what is it *about*?” Hubby then proceeded to tell me the plot–something about a king who stutters, realizes he’ll sound terrible on the new invention of radio, so he gets tutors to help him speak properly. He tells me he got all this not from googling it or anything, but from that very trailer!
I had mentioned just before we started watching Dr. Who that evening that in the modern episodes, they talk so quickly that I can’t keep up with or understand their accents or the various technologies and plot points they’re explaining. (The old episodes, Doctors 1-7, could get confusing, but at least they moved and spoke more slowly, so I picked up much more.) So I’m often lost at what’s really going on. I’m left with, “Well whatever’s going on, he has to save Amy Pond from the monster. And something about this will cause all of Earth will be destroyed if he fails.” I do what I can to keep up, but keep missing so many points all along that I couldn’t really tell you what happened, other than a few basic things.
Well, now hubby admitted that he’s able to keep up with the fast talking and accents, understand all the explanations, pick out the important bits, and know exactly what’s going on. So we were left with the question: Which one of us is the “normal” one? And could all these fast Hollywood-style modern movies and TV shows, and the modern ways of doing things, be the reason why things like NLD and Asperger’s are becoming more noticed?
I don’t have trouble with recognizing characters unless two look very much alike, or following a general plot, but I have an awful time with high-paced movies like the movie “Batman Begins.” A guy friend showed it to my hubby and me, saying how wonderful it was, but I thought it was a garbled mess. I mostly watch “chick flicky” type movies like Jane Austen, Anne of Green Gables, or the like, because they slow down and talk a lot. It also gives me a chance to actually study the characters’ body language and learn how to interpret better. But when it starts moving way too fast or they start talking way too fast (especially with accents), I get lost.
The forum’s responses were full of agreement, other people with NLD with the same problem. In fact, one person said that the marketers want their ads to work, so if they lost most people, they would know and not make such ads.
On 6/21 and 6/22/11 (split for time considerations), I watched the movie Spirit of the Beehive on TCM. It’s a Spanish movie; I thought the subtitles would help me catch everything (since I occasionally miss spoken words), but no, it didn’t. There were a lot of things done via visuals that just seemed meaningless to me. But I had no idea how much I missed until I read the summary on Wikipedia.
I went there in the first place because I was very confused by the whole movie: Who is that guy in the barn? Who has Teresa been writing to, a brother, a friend, a cousin? (I thought it was her husband Fernando, and that they were separated, only to find–near the end of the movie–that they live in the same house.) Was the guy in the barn the guy she was writing to, some indigent relative whom her daughters don’t know? Why was he killed? Did Teresa burn the letter because it was him and he’s dead now, so why bother? Why did they give his stuff to Fernando? etc. etc. etc.
The summary was full of things I completely missed. For example, I didn’t catch that Ana gave the watch and coat to the guy in the barn. I didn’t catch that “The father discovers which of the daughters had helped the fugitive by noticing Ana’s reaction when he produces the pocket watch she had given to him.” That scene was completely visual, except for the sound of the watch, which plays a tune. Instead, I thought he first suspected that she knew the guy, when he found her at the barn, looking at the blood.
I also didn’t catch that Teresa putting a coat over her sleeping husband’s shoulders was anything more than a typical, caring gesture. Of course I missed the political symbolism: It was meant to be veiled, because of censorship, and I didn’t know a thing about Spanish modern history.
I feel like I catch many things generally, especially in movies, but occasionally something like this comes along and shows me that I’ve missed a lot of things….
I have always had trouble with estimating time, though over the years I’ve gotten much better about getting places on time. My parents were always getting mad at me for this, but I didn’t know of anything I could do about it.
I have noticed that I seem to take longer doing things than other people do in many cases, such as reading, homework, tests, housework, tasks at a job, even a test of my proofreading and other skills which I took when applying at a temp agency when I was about to graduate college. It took me far longer than anyone else who had ever taken their test, but I got a perfect score, unlike anyone else.
I take time and focus on the details, so it may take longer, but it is done well. With reading, I also read every word, unlike Cugan, who tells me that he speeds through books. I don’t know how he can really say he read something if he doesn’t read every word, or how common this is.
I don’t like wearing jeans or twill or dockers because they are too stiff. I don’t like the feel of the collar or wristbands of sweatshirts. I don’t wear sweaters because I don’t like the feel of the knits or the itch of wool and acrylic. I can’t stand turtlenecks or tight clothing. I like soft, loose-fitting clothes and flat shoes.
I don’t like food that is too spicy or hot. Since so many people consider jeans, sweatshirts, sweaters, etc. to be very comfortable, and so many people love Mexican food and the like, I can only conclude that I am sensitive to how things feel and taste.
Instead of playing games with the other children on the playground, I usually played by myself, acting out fantastical stories I invented. In fact, this blog sounds familiar. I was acting out scenes with the pirate cat Samantha and the crew, or the Space Blimp (based on a dream), or that I was on a planet called Spimpy which had poisonous ground so you had to stay on the Kee Klamp frame structure on the playground….Sometimes my friends joined in, but I often preferred to be alone because they didn’t do or say the things I wanted my characters to do or say. This happened up until maybe 5th or 6th grade, when I finally got tired of strange looks from the other kids.
I also made puppets with my hands until about 5th grade, when I got tired of being made fun of by the other kids, and of my teacher saying I was too old to do that. Neighborhood adults and kids made fun of me for “talking to trees,” though I was actually just acting out the different speaking parts of my stories, not talking to trees.
I have recently learned that such behaviors are common for NVLD children, that it wasn’t just me. Of course, when I did them, they seemed normal to me, not bizarre at all. Writing became my way to play out my stories in a socially acceptable way. Teachers wrote on my report cards that I was unique and a joy to have.
There were always a few nice kids in school who didn’t care about my “weirdness” and befriended me. Many were older or younger; many were boys; many were minorities. Maybe my NVLD and its resulting difficulty in making friends, is why I don’t care about race, ethnic group, religion, age or gender when making friends. As long as you’re a sweet and/or pleasant person who does not cut me down for being different from you, you can be my friend.
I still had problems dealing with people in the early years of my adulthood. But some time in my mid-twenties, I discovered that most people smiled when I came around. The people at my new job called me sweet, and when one woman made a snide comment about me, the other women were angry with her. I’ve noted that being sweet and nice goes a long way when you’re socially awkward.
In late elementary school, I began seeing a psychologist because my mother felt my personality had changed somehow. I’m not sure what exactly happened, but I think it was related to changing schools in 3rd grade. I remember very little bullying at my old school, but there was a group of kids who kept avoiding my overtures of friendship, and one or two of them also changed to my new school and bullied me there. I was bullied at my new school by others as well, so that may have triggered the problems. I think I was withdrawn or something, and combative at home, and that’s how I ended up in counseling.
The bullying continued into middle school, with me never fitting in anywhere, and the popular, fashionable girls ripping on everything I wore. One girl told me that a certain guy wouldn’t go out with me because my clothes didn’t match; I have to wonder if the guy really cared that much about such things.
I got a burst of popularity briefly in the spring in eighth grade because the story went around that a certain cute, popular boy looked at my picture in the yearbook, and said I was a babe. Now all the popular girls were flocking around me, wanting to sit with me outside at recess, saying, “[name withheld] likes you?” He never did anything about it; I didn’t know the guy, he wasn’t in any of my classes….
But I believe the story was true, because he was in my German class sophomore year in high school, and he was always flirting with me. But I soon discovered that I wouldn’t have wanted to date him anyway: He was a jock, trying very hard to fit the stereotype of “dumb jocks,” not taking the class seriously, constantly joking around and annoying me to no end. I greatly preferred another guy in the class, a friend of mine who was intelligent–and geeky. People thought this other guy was strange, though they also seemed to like him; meanwhile the popular guy was the one I couldn’t stand. LOL
I always had trouble following the fashions. I just didn’t know what they were. For example, in junior high, I loved wearing a certain pair of pants which were very comfortable; my mom had just bought them for me at a yard sale. I did not understand why all the kids kept pointing to me and laughing about “bellbottoms.” I looked it up, and thought it meant that the rear part of my pants was bell-shaped, but that made no sense to me. It was 1985, not long after bellbottoms fell out of fashion, but I did not know what they were.
All during middle school, I drew pictures of Martians and other civilizations I had dreamed up. In 9th grade, a girl saw a picture of two young people from one of these outer space civilizations, and said, “Oh my gosh, are those bellbottoms?” When I drew the pants, the pantleg bottoms reminded me of pants I had seen as a child, but I didn’t know they were called bellbottoms or that they were now considered ridiculous. Eventually, I finally found out what bellbottoms were, and agreed that they looked ridiculous.
After all this social pressure to see bellbottoms as ridiculous and ugly, when bellbottoms started coming back into fashion in 1991, I was shocked, and refused to wear them. Nowadays, people even talk like tapered legs are silly, while bellbottoms or boot-cuts are flattering. But I refuse to wear bellbottoms because I still think they look ridiculous. (Of course, that has nothing to do with NVLD, but with personal taste. There are others who refuse to wear bellbottoms or low-risers and don’t have NVLD.)
Also, I thought certain colors went just fine together, but other kids/teenagers would chide me for not matching my colors.
In my teens, when family came to visit, I’d hide in my room where it was quiet and not crowded, and I wouldn’t have to sit next to my annoying brothers, and people didn’t talk so loud next to me on the couch that I started yawning.
My grandma wondered why I didn’t dress fashionably like the other girls she saw at church, why I didn’t appreciate a fashionable outfit (with pantyhose) she gave me. My mother wondered why I didn’t dress to show more of my figure.
At school, I did occasionally know about guys who liked me, but for some reason there was a severe lack of guys asking me out on dates–except, of course, when I was 14, when four boys asked me out, but my mother wouldn’t let me go out on dates yet. I could see boyfriends at school, I could date after 16, so where were the boyfriends? (I know at least one of them was too shy to ask me out. But were they all shy?)
When the other girls were going out on dates, I was sitting at home, alone, pining away for different boys, wondering if I was too plain to attract anybody, wondering why nobody was asking me out. Even now I’ll often feel plain even though many people have told me–without me fishing for compliments, by the way–that I’m beautiful.
And now for more detail about what you may call “selective mutism” in me, which is just a fancy clinical term for extreme quietness because of extreme shyness. (I use the term only grudgingly because I don’t think a common personality trait should be labeled like a disorder.)
Even if neither NLD or Asperger’s actually fit me, selective mutism definitely does. Anyone who has known me, from any time in my life, would verify this. In fact, my high school yearbook (senior year) is full of signatures from fellow classmates who wrote about how quiet I was. They wrote little else.
Many NVLD children are shy and quiet, or become that way after repeated rejection, while others are far too talkative or forward. I’m shy and quiet around strangers and people I don’t feel comfortable around. I’m also usually quiet in groups of people: They do most of the talking while I just watch and listen, and I even forget I’m there or that people might want to hear from me.
I’ve been told that I blend into the furniture. A blind man once noted that he could tell when other people were around him though they were silent, because they made various noises: movement, coughs, and the like. I, however, became invisible. I did not do this deliberately: I was just behaving in my natural manner.
My mom always used to say, “She’s quiet until she warms up to you. Then she talks your ear off.” When asked if I was quiet at home, she’d give an emphatic, “No!” If I’m alone with a person and “click” with him or her, I can become very talkative, and conversational give-and-take becomes easy because I always have something to say.
But if I don’t click with that person, or if I’m with more than one person, my brain often goes blank and I don’t know what to say. They may try to start a conversation with me, but I don’t respond because my brain freezes, or because I don’t even realize they’re trying to start a conversation. Then later on I discover that they think I don’t like them, or was snubbing them.
I’ve always struggled with talking with strangers; I was once told that at parties, I “cling” to the people I know. Once, I was even suspected of being untrustworthy when I was just being my usual shy and quiet self. I’ve also been accused of being stand-offish or snobbish. But none of these things are true: I was just acting the way which is natural to me. Some people may consider a shy person to be shifty because they have nervous tics and are afraid to make eye contact, when it’s really just from shyness.
In my church youth group, I seem to recall the kids thinking it a big deal if I smiled or laughed. Yes, I do have a sense of humor, so I’m not sure what this was all about.
I once exchanged these comments with one of my best college friends senior year:
I’m glad we are rooming together this year. You are so different than you seemed all these years. I’m really glad that you talk a lot more now. Before it was hard to tell what you were thinking or feeling….
For a long time you were very quiet and never said anything. You sat with all of us at meals but you never joined in the conversations. We didn’t really know you. You were a part of the group, but you were a stranger for a long time. I asked you to room with me this year for a reason. I didn’t know you and I could tell there was an extremely interesting person in that shy, reserved exterior. And I was right. You talk so much more than you used to. You are a completely different person than I had once thought. I love the ‘you’ that I have gotten to know this past year. Meeting the real ‘you’ has been one of the highlights of my year
I’m surprised you say you didn’t really know me before and that I didn’t talk much. It seemed different to me. I had long talks with you and Pearl and others, and I felt closer to you all than I did to almost everyone else. Like here were people that actually knew me. Now I’m a bit confused about the whole thing.
I didn’t mean to make you doubt yourself or the way you see yourself now or in the past. You really didn’t talk to me as much as you talked to Pearl…. You did talk a lot when you were with one person, but I usually saw you with the ‘group’ and you really didn’t say much. But that’s not bad. Usually I don’t say much in the midst of a large conversation. I just can’t keep up and my mind goes blank.
Even my mom once said, while I was in my teens, “You always have been a little strange….” I recently discovered (in 2008) that a family member has always thought I was sexually abused as a child, because of my behavior while staying with her one week around age 10. A friend asked if I was always very quiet, speaking only when spoken to; I said yes; he said that was probably why. But no, I was not sexually abused as a child. In fact, it is noted in literature that there is no evidence that selective mutism is caused by trauma, but is basically extreme shyness (Bruce Black, MD, Information on Selective Mutism). Note that unfamiliar situations can cause it, much as in NVLD, unfamiliar situations cause a person to “freeze up.”
Outgoing people often don’t seem to understand just what a struggle it is for a shy, quiet person to do what they do, and they’ll make comments that I should talk to people I don’t know, talk more to the people I do know, etc.–not realizing that they might as well ask a cat to become a dog. In fact, literature on selective mutism states that: “Attempts to pressure, demand, or force the child to speak, to trick the child into speaking, or to punish or shame the child for not speaking are most often counter-productive” (Bruce Black, MD, Information on Selective Mutism).
These comments assume the shy person is just being stubborn, when it is far more effective to accept the person and help her feel more comfortable. It would help for the outgoing person to ask the shy person to come over, or for the talkative person to ask a series of questions until one finally inspires the quiet person to speak.
Telling the shy and quiet person how to act may be kindly meant, may seem like “helping” to the outgoing person. But to the shy person, it feels like unwelcome criticism–and may end up pushing her farther into her shell. It is that way to me. It also does not help for Type-A and/or outgoing people to tell a shy person or a learning disabled person to just “push through it.” There is far more going on in the shy or LD brain to hamper “pushing through it” than a simple lack of will.
Of course, the trouble with a name like “selective mutism” is that it takes a common trait–shyness/quietness–and makes it into a “disorder.” As if shy people didn’t already feel marginalized enough. It amazes me that we have to have clinical terms and details of how terrible this disorder is and how to “fix” it. Couldn’t we just accept that a lot of people don’t fit in with the predominant American outgoing/extrovert culture? Why do we have to have research to tell us that it’s counter-productive to keep harping on a shy/quiet person’s lack of words? Any shy or quiet person could tell you how annoying it is to constantly hear “smile!” or “you’re so quiet” or “just go talk to people.”
When I read the letter “Out of Ideas” in late April, I knew how the quiet girl felt, and was so upset I wanted to speak out on her behalf. So I sent this to Annie’s Mailbox:
I wouldn’t be a bit surprised if, next year when the lunch schedules change, this quiet girl will be happy to switch tables to a more welcoming and accepting group, and wonder why she stayed with this one for so long. I’m willing to bet she actually is an interesting person, but these girls never let her get a word in edgewise, and when she does think of something to say, somebody scolds her for not talking enough and she keeps her mouth shut instead.
All that pestering about her not “behaving” properly, saying her shyness is just an “excuse,” and constantly excluding her from fun activities, is probably making her feel like a freak and pushing her further and further into her shell.
The way to draw out a shy person is to ask for her opinion on a subject, maybe make a compliment or two, because maybe she just hasn’t been able to push into the conversation before the topic changed. Another way is to have some one-on-one time with her, give her a chance to talk. If she’s included in activities, she may surprise them with being a fun person after all.
There is something called “social mutism.” I don’t like the term because it, once again, makes a quiet person feel like there’s something “wrong” with her, instead of just accepting that she has a different idea of when it’s time to speak.
Still, research done into social mutism has shown that pestering and scolding a quiet person is counterproductive. This person needs to feel safe enough to open up, or it just isn’t going to happen.
Also, the extrovert brain has also been shown to work differently in social situations than an introvert brain: The extrovert can easily make small talk, while the introvert simply cannot keep up. The quiet person may actually despise small talk, but if allowed to mull over an issue, can come up with something brilliant to say. Is quantity really more important than quality?
–A Quiet Person With Lots to Say
This site is run by a woman with NVLD. It hasn’t been updated in 6-8 years, but it’s still useful. I especially love when she says that, as a highly verbal person, she relates to the world primarily through words–and writes a lot of things: http://www.geocities.com/HotSprings/Spa/7262/
Particularly telling paragraphs from Sue Thompson’s “Nonverbal Learning Disorders”:
This child is unable to ‘look and learn.’ He does not perceive subtle cues in his environment such as: when something has gone far enough; the idea of personal ‘space'; the facial expressions of others; or when another person is registering pleasure (or displeasure) in a nonverbal mode.
These are all social ‘skills’ that are normally grasped intuitively through observation, not directly taught.
(I’ve learned many things about body language and other social skills, but had to pick them up through articles and becoming aware that such things existed, not intuitively. So I do much better these days, and can understand much of the more subtle body language I observe in movies. However, I still miss many things. For example, I now know that an NVLD person has trouble picking up that someone wants to start a conversation. It helps to know this, but I have recently discovered that I am still woefully bad at picking up that someone wants to start a conversation with me. Even if I do pick this up, my brain often freezes, so I don’t know what to say. The person becomes offended, thinks I don’t like them, etc. So knowledge helps, but doesn’t always fix the problem.)
If a child is constantly admonished with the words, ‘I shouldn’t have to tell you this!,’ this should alert everyone that something is awry because you do have to tell them (everything). The child’s verbal processing may be proficient, but it can be impossible for her to receive and comprehend nonverbal information. Such a child will cope by relying upon language as her principal means of social relating, information gathering, and relief from anxiety. As a result, she is constantly being told, ‘You talk too much!’
The child with NLD often develops an exceptional memory for rote material; a coping skill he has had to hone in order to survive. Since the nonverbal processing area of his brain is not giving him the needed automatic feedback, he relies solely upon his memory of past experiences, each of which he has labeled verbally, to guide him in future situations. This, of course, is less effective and less reliable than being able to sense and interpret another person’s social cues (because of the vast array of differences in human nature).
Cumbersome monologues are another trait of a child with nonverbal learning disabilities. Normal conversational ‘give and take’ seem to elude her. Teachers complain of a child who ‘talks incessantly’ and parents report, ‘She just doesn’t seem to know when to be quiet!’
(Though some of you may not believe this, I have been accused of this before.)
Owing to visual-spatial disturbances, it is difficult for this child to change from one activity to another and/or to move from one place to another. A child with NLD uses all of her concentration and attention to merely get through a room. Imagine the frustration produced when attempting to function in a complicated and/or new social situation. Owing to her inability to ‘handle’ such informational processing demands, she will instinctively avoid any kind of novelty.
The importance of identifying and servicing children with nonverbal learning disorders is especially acute. Overestimates of the child’s abilities and unrealistic demands made by parents and teachers can lead to ongoing emotional problems. A favorable prognosis seems to depend upon early identification and accommodation. The child with NLD is particularly inclined toward seriously debilitating forms of internalizing psychopathology, such as depression, withdrawal, anxiety, and in some cases, suicide.
Dr. Byron P. Rourke of the University of Windsor and his associates have found that nonverbal learning disabilities ‘predispose those afflicted to adolescent and adult depression and suicide risk.’ The child with NLD is regularly punished and picked on for circumstances he cannot help, without ever really understanding why, and he is in turn often left with little hope that his situation will ever improve. After amassing years of embarrassing and misconceived unintentional social blunders, it is not too difficult to comprehend how a person with nonverbal learning disorders could come to the conclusion that his environment is not structured to accommodate him.
For more, go to the “Social” section of the above linked article.
Though I myself haven’t been accused of harassment or stalking or racist remarks, people with NVLD are sometimes accused of obsessive behavior because they don’t understand limits. They’re not psychotic or stalkers or evil: They’re just learning disabled, the same as a person with dyslexia or autism or ADD. This is especially a danger if the NVLD person is lonely and someone pays attention to him/her. Common workplace behavior is described here: NLDline “Adults with NLD” section, then “Employment Information for Adults With NLD,” then “Kelli Bond–Nonverbal Learning Disabilities from 9 to 5.” [Note: As of 12/11/13, I can't show the URL here because of malware warnings.]
This article goes into the handwriting and math difficulties of NVLD. It also helps explain why, for example, I’d much rather have a conversation than play a board or card game. But of course, always keep in mind that articles on NVLD give many examples from the severe end of NVLD.
What is Nonverbal Learning Disorder: In A Nutshell (article from NLDline; I had to remove the link because it somehow has acquired malware, despite being a respected site)
Someone who loves having NLD [I had to remove this link because of a malware warning. It was an NLDLine article with the link should_i_tell_my_child.htm .]
The Syndrome of Nonverbal Learning Disabilities (shows how people with NVLD can have different strengths and weaknesses, and how oftentimes problems can be overcome with enough practice)
Non Verbal Learning Disabilities: Impact on Social Functioning; And Interpersonal Skills [I had to remove the link because of a malware warning, but it is an NLDLine page, with the last part of the link new_page_52.htm.]
Sites discussing the possibility of subtypes, which would explain the diverse variations in people diagnosed with NVLD:
Palombo’s Theory on Subtypes (page 18)
The article Developing an Educational Plan for the Student with NLD gives many examples of how NLD affects a person day-by-day. For example, getting lost, being late, trouble with changes, trouble following multi-step instructions.
Dirty Filthy Love is the strangest movie I’ve ever seen–but, even though I do not have OCD or Tourette’s, I felt a kinship with the characters because “normal” people did not understand them.
This article on eye contact explains not only my trouble with making eye contact, but my difficulty in understanding or being understood through the use of eye contact. While my eye contact has greatly improved over the years, and the article is from the point of view of an autistic person (which is at the extreme other end of the spectrum), eye contact still gives me many of the problems described in this article, and can be tiring. So often I’ll just look away while speaking, or even while listening, if I’m having trouble focusing on the words.
The NLD ties in quite well with ISFJ, or the Protector Guardian on the Keirsey Personality Test. ISFJs are attentive to detail, prefer schedules, like to have things laid out ahead of time, and are not very intuitive. ISFJs are also often misunderstood.
On the one hand, I used to have lots of, and still have some, trouble understanding people and social norms–the NLD side. On the other hand, I am an extreme introvert (100% on the Keirsey Test). I do not easily open up to people until I consider them trustworthy and “safe.” With most people, this never happens and it’s hard to get beyond “hello” with me; with a few special ones, it happens either immediately, or in a short period of time. If I consider you a close friend, my introversion vanishes.
With ISFJ, “families are the centers of their lives”; they “are extremely warm and demonstrative within the family circle”(ISFJ)–which means if you become one of the very few whom I adopt into my little family circle, I will easily hug you, maybe even cuddle up to you. But I keep most people at a safe physical distance.
They are not as outgoing and talkative as the Providers, except with close friends and relatives. With these they can chat tirelessly about the ups and downs in their lives, moving (like all the Guardians) from topic to topic as they talk over their everyday concerns. However, their shyness with strangers is often misjudged as stiffness, even coldness, when in truth these Protectors are warm-hearted and sympathetic, giving happily of themselves to those in need. Their quietness ought really to be seen as an expression, not of coldness, but of their sincerity and seriousness of purpose (About the 4 Temperaments)
So I’ve been hit on both sides with the potential for misunderstanding, while the people closest to me usually know better.
This webpage goes into the strengths and difficulties of NLD adults in their jobs, and how in the past they would have found it easier to make a successful career. Especially with how these days the clerk or secretary often has to do receptionist duties as well–a mix of filing and other solitary clerical duties that are great for an NLDer, with duties that are best for extroverts with great social skills–it’s gotten harder to find that suitable job.
At my last job, I did wonderfully with the clerical tasks, but–though I did always try to be polite and kind with my boss’ clients–dealing with clients was a severe weakness. I had trouble with thinking on-the-spot of what to say or do, especially if they were upset about something. I also had trouble stopping what I was doing to answer the phone. I admired other secretaries in the building who handled these situations with ease. I often had to stay after about 15 minutes or so to finish the day’s clerical work, but I did it well.
Fortunately, many of the deficits of NVLD are not life sentences: With intervention, NLDers can be taught to function more normally in many ways. However, for older adults who missed out on being diagnosed while they were children (unlike many kids and young adults today), unless they find some way to finance and find time for a diagnosis among their many adult responsibilities and bills, they are at a disadvantage.
I have spent years primarily studying actors in movies and on TV, and struggling to maintain better eye contact, to improve my social skills. They are much better now than when I was a child. I also have, since my teens, read many things in magazine articles, books and websites about such things as psychology, facial expressions, and the like. There are also the insights and advice of friends and other counselors.
So I have been able to build some of the abilities to read and understand others, that other people may be able to figure out instinctively. It still needs some work, however, as recent experiences have shown. Also, there are often times when I can tell someone is angry, but haven’t a clue why, even when they’re angry with me. So being able to read people is not just about reading their body language when they’re angry, but their verbal communication with you.
Comments on blog asking How can a positive diagnosis of Asperger’s help an already established adult?
Comments on this blog go into self-diagnosis and whether it can be taken seriously. Note that for adults, it can be quite expensive to get tests done, you don’t have a school helping you with this, and things you may have done as a child that would fit the diagnosis, you’ve since learned to stop doing. There are many things I struggled with as a child or teenager–such as handwriting, various social skills, eye contact, spontaneity/change of plans–which I have either overcome or greatly improved over the years.
In an old diary, I discovered that in 1992, I had written that if my boyfriend wanted to change date plans and go rollerskating instead, or my friends decided at midnight to go sledding, I didn’t like to do that, even though the activity itself would be a lot of fun. What I didn’t like was the change in plans, but my boyfriend thought I didn’t like rollerskating when I actually loved it and did it all the time as a kid.
I had forgotten this trait was so pronounced back then, since over the years I’ve gotten far better at handling spontaneous changes of plans; this makes me think mild Asperger’s is still a good possibility. I did remember how upset I’d get in the late 90s if my household routine/laundry schedule had to be changed, while now I can just switch days around if I have to.
It’s one reason I don’t get officially diagnosed, because a diagnosis would have helped me a lot more when I was a kid or young adult, but now as I near 40, my “symptoms” have diminished enough that a diagnosis may be harder to get anyway. Driving is still a problem, as is socializing (I’m extremely quiet and shy even around family), but I’ve learned to be far more organized and I take good care of my house.
Here are points from a list I’ve begun to make of questions to ask a doctor, when/if I ever get the money/time to get diagnosed:
–In earlier grades, the discrepancy between math/science and English didn’t show up right away. By 4th or 5th grade, as math became more complex, my trouble with it showed up as disinclination to do math work (we were work-at-your-own-pace). It took a long time to learn multiplication, division and complex fractions. I was still in the 4th grade book in 5th grade. Spelling, English and Reading, however, were beyond grade level.
In middle and high school, the discrepancy became more prominent. Middle school put you in different “teams” depending on your perceived ability, so I was in the “smart group” for all my basic core classes. However, my trouble in math became especially prominent when trying to sort out percentages, interest rates, and the like higher math. English and Reading, however, were fine. Social Studies mostly had problems with organization of homework, completion of homework, filling in maps, coloring maps properly (colored pencil only and all in one direction per instructions of teacher), and handwriting (greatly improved but I “drew” in various ways rather than writing, making the teacher wonder what the heck I was doing).
–In high school, where I could finally enroll in each individual class based on my own ability and the team’s, I was able to improve my GPA. I discovered that higher math and science classes would result in poor grades. So I took regular math and science classes, where I excelled above the other kids (except in Chemistry, which I did very poorly in, but the teacher was a jerk and everybody hated him). For English, however, I soon went from Honors to AP and did very well. I also did well in language courses.
I did note that the set of kids in the AP/Honors level courses was very different from the set in the Regular courses, telling me that most of the “smart” kids were smart in everything, while I was only smart in certain things. In college, we were permitted to choose between foreign language and math, I had a writing major, and I could fulfill my science requirement with botany and astronomy. So I was able to maintain a high GPA.
–Several years ago, I came across various school papers (now probably discarded) from different grade levels starting in 3rd-6th grade. The early grade papers were full of illegible chicken scratches and red marks from the teacher, complaining.
As the years progressed, my letters became better formed, but I had trouble spacing them (and, also, lining up numbers properly on math homework, which was always a mess). When I began learning cursive, my writing became unreadable again, though at least now the words were separated and a bit easier to make out. Teachers would write on my papers that they were giving me poor marks because they couldn’t make out what I had written, not because the answer was necessarily wrong. I was given handwriting practice papers many times.
By 6th grade, my handwriting had much improved, but somewhere around 7th grade, I began “drawing” to make my writing prettier. This resulted in strange-looking writing that the teachers complained about. I stopped doing this before entering high school, resulting in writing that was, at last, legible and nice-looking.
–My French teacher in 7th grade constantly wrote nasty notes on my papers, complaining that I was not following directions. I’m sure this was not deliberate on my part.
–My teacher from 4th-5th grade was constantly criticizing me about my behavior. I was a good child, not the sort to act up in class, so much so that when a tyrannical substitute teacher made me write my name on the board, the whole class was shocked and considered it a grave injustice. But my teacher found plenty to criticize just the same.
I can’t recall what, anymore, though I do still have a report card from her, available on request. Past report cards said I had self-discipline and could take criticism; she said the opposite.
Once she asked me a question in a one-on-one conference at her desk, and I had to think a bit to figure out how to answer. She scolded me for taking too long to make up my mind, calling it “babyish.” Yet it’s always been hard for me to make up my mind about difficult things, long since babyhood.
I did improve greatly in 6th grade. I don’t know why they changed my teacher–did my parents request it?–but they did, to a far more easygoing teacher. Well, she was easygoing as far as, she was nice and didn’t criticize my every move. But the class was far more structured, with set homework and set times when we all had to work and be quiet. My previous teacher just let us do whatever all day long, so I often avoided working on subjects that caused me trouble. But because of this teacher’s imposed structure, I did far better.
–Once during 3rd grade, while our teacher read from a storybook, we were all sitting/lying on the floor around her. I was lying belly-down, propped up with my arms. I think my socks had fallen down; for some reason, probably because it was the quickest way to pull them up, I reached down underneath my body and yanked them up quickly.
To my surprise, when I returned to my regular position, the teacher was giving me a strange look and the kids were all laughing. I had no idea what I did that was so funny. One of the kids mimicked me and put her butt up in the air, but that wasn’t what I did at all. I was so embarrassed that I wanted to go away, but I couldn’t figure out why my actions were so funny or why people thought I had stuck my butt up in the air. All I did was pull up my socks. And this was hardly the only time the kids and/or the teachers thought I acted oddly. I can’t give details anymore, but they were many.
–In 3rd and possibly 4th grade, I was still playing with my hands, as I had done since I was still in the crib. I had progressed from simple hand-men to various creatures: dogs, cats, dogs with different ears, Figure 8, the tiger-kangaroos Sally and Hedreda (started in Kindergarten), etc. etc. I had a highly imaginative fantasy life and had no qualms about acting it out when others were around: playing with my hands, acting out my own little stories on the playground by myself because nobody else would know how to play the characters right, reciting the voices of the people and creatures in my fantasies while walking to school K-2nd grade….
My 3rd or 4th grade teacher began shaming me for it, saying I was far too old to play with my hands. I began only now to notice that other kids did not do it. I taught a male friend on the bus how to make my hand puppets, and the other kids made fun of him for it and said we were boyfriend/girlfriend, which at that age is embarrassing. Eventually, I stopped, tired of being made fun of.
I don’t recall how long I continued to act out stories on the playground or in my backyard or while rollerskating around the block. Some of the neighborhood kids–even adults–began saying that I “talked to trees.” This upset me because I was not doing anything so strange.
–Sometime in elementary school, I started walking up on the bank next to the fence when walking from the back door to the garage, whenever it was time to get into the car. Everyone else in the family walked down on the sidewalk. During the wintertime, it was snowy up there, making it harder to walk. So one day, I asked to use the shovel. Mom said okay, thinking I was going to shovel the sidewalk. Instead, I shoveled the top of the bank where I walked. It seemed perfectly reasonable to me. But then a couple of guys stopped their car and called out, “What are you doing?” I assumed dignity rather than shame and smiled at them. But then, only then, it struck me that maybe what I was doing was a bit peculiar.
–Sometime in elementary school, after I had spent a year dealing with a couple of bullies at my lunch table (assigned seating), I went to visit my aunt and uncle for several days. My aunt criticized me constantly (which she also did to her mother). I told her about the bullies at the lunch table, and she said next time, ask the boy when he last changed his underwear. Not until my 30s, after some family upheaval that involved my parents but not me, she revealed to my parents that she had always believed my dad or brothers had sexually abused me!
One of my brothers constantly bullied me, teasing me and criticizing everything I ever did, said or liked (which he does to this day, so I have very little contact with him). But none of them had ever laid a finger on me in a sexual manner. Her reason for believing this: my behavior when I stayed with her for that week! I’m not entirely sure what I did or said that caused her to think this. (By the way, she is now estranged from most of the family, with whom she never really got along, I hear.)
–College: My college required all incoming freshmen to take a series of SEED tests, which were used for placement. My advisor informed me that I did poorly on reading speed and comprehension. He recommended that I take a remedial reading course. So I did, but soon discovered that my classmates were mostly international students and others who had deficient English skills. I had been in AP English, so I felt this course was a very poor fit for me, and dropped out.
This test did show a problem with comprehension and people have complained about/commented on how slowly I read, so it’s not imaginary. But if given ample time to read and sort out what I’m reading, I do all right. Hence, the AP English classes, where I made high grades!
I was doing very well in classes, but social issues were quite another matter. I was very shy and had trouble making friends at first, but did manage to get a boyfriend, my first significant boyfriend ever, first kiss. However, I was very naive with the boys and they preyed on me. I didn’t have many boyfriends, and was not at all promiscuous, but I did get used just the same.
I learned later that my first boyfriend had lied to me about who he was and probably other things as well, to get me to like him–something I’m told he later did to all sorts of girls on a local BBS. I had no idea, and thought the boy I knew was the real him. Then he tired of me and became another boy entirely. My heart was broken and I had no idea what was appropriate behavior for dealing with it. I was very naive. He got very angry with me, and I had no idea why.
Another boy came along and began using me when he was feeling lonely, but refused to actually love me. He did this for many months, until finally I began to wonder what the heck was wrong with me that I would keep allowing him to do this. I began to see a counselor and got the strength to let go of my need to let him.
The following year I finally found a guy I thought would make it all go away. He seemed perfect for me in the beginning. We got engaged and then spiritually married. But as time wore on, he grew increasingly emotionally abusive, and used guilt and force to make me do things I didn’t want to do.
I also began to learn that he had been manipulating me by pretending to be asleep and act out his dreams. It turned into an elaborate act: his “subconscious” coming out while he slept, to be the kind of husband he was in the beginning, telling me the inner secrets of the conscious husband’s behavior and heart. I believed all of it because I thought he would never lie to me.
After he finally revealed the truth, I was devastated at his treachery, and nearly broke up with him. But I was too entrenched by then to just give up our relationship, and it continued until he finally ended it. But even then it took me a few months to really let go and start looking for a healthy relationship. I had lost so much confidence in my own ability to find a decent man that I asked my friends for help. They had hated my fiancé during most of our relationship, seeing plainly what I had missed.
–I was made fun of all through school. In elementary school, I was “weird” and constantly bullied verbally. In junior high, I was dorky and kids put a sign on my back one day during a fire drill–and even the teacher laughed! In high school, the girls stopped bullying so much, but some of the boys sexually harassed me. Fortunately, the kids seemed to like me better, and one of the girls said, “You don’t need to be so shy: A lot of people like you.” But the sexual harassment was devastating.
In college, frat boys made fun of me behind my back for coming to a movie party and then barely speaking to anyone. I was too terrified to talk to most of them, but I did speak to the boys who were my friends. Unfortunately, my ex-boyfriend who hated me was a member of this frat and arrived later, making me more tense.
After college, I began working. Adults were less likely to make fun of me except for friendly teasing; however, I soon discovered that they could be just as difficult to deal with. People were supposedly “afraid” to talk to me, even though I was the gentlest person anyone could approach. I didn’t talk enough to people. I resented being made to feel like a jerk just because I was quiet and shy.
–In high school, one day in Drawing I thought I was supposed to do the day’s assignment one way, according to what the teacher had said. So for most of the hour, I did it that way. Then some kids started telling me I was doing it wrong. These kids already bullied me quite a bit in general. I don’t remember details, but it turned into me feeling absolutely mortified as the whole class laughed and the teacher yelled about HIM having a bad week.
I went home and cried to my mother that I was weird, after I had only just thought to myself that finally I no longer felt weird. Another time, during graduation rehearsal, the teacher said do such and such and then go back to our classrooms. So when we finished such and such, I began going to my classroom. I soon realized that everyone was still in procession and heading back to the GYM! I have no idea what happened.
–I have always had trouble remembering multi-step directions. I have to hold back and watch other people do it before I can do it.
–I expect people to say what they mean. If they don’t verbalize, I often miss it, only to find out later (from somebody’s complaint) that I missed it. But I’m not completely blinded by nonverbal communication; I’ve gotten better at it over the years, especially from reading about it and watching movies. Still, one time in college a friend kept saying, “So what else is going on?” all through the night. So I kept coming up with more things to tell him, since he kept asking for more. Finally, he told me I was being very rude keeping him up so late. HUH?
–My first college boyfriend complained of me “shadowing” him. I had no idea what he meant. I thought I was behaving just like any girlfriend and that he liked it. He also complained that I waited outside the bathroom for him. I had no idea this bothered him, until he complained about it to “warn” my ex-fiancé when we first started dating. Neither of us knew why this was such a big deal to my ex-boyfriend. I wasn’t, like, showing up out of nowhere and lurking there to wait for him; we had gone there together and separated to go to the bathroom, to meet up afterwards. Both that ex-fiancé and the man I eventually married, found my behavior re: bathrooms to be perfectly normal, expected and preferred, and no other guy complained about me “shadowing” him, so these may have actually been that one boyfriend’s problems, not mine.
–I can’t stand loud voices (which also make me yawn), sweaters, jeans, sweatshirts, anything tight or constricting, turtlenecks, anything rough, things which other people seem to love wearing and consider comfortable. I don’t like how they feel. I need super-soft clothes. I often cover my ears when voices get too loud, and afterwards feel like I’ve been at a rock concert. I don’t like wearing wristwatches or bracelets, so I used to either carry my watch in my pocket or wear a necklace-watch. Normally the only jewelry I wear is my wedding ring and at least one necklace.
–I’m so meticulous with spelling and punctuation that I used to get after people online for making spelling/grammar mistakes. After being told that this annoyed people, I stopped. After college, I took tests at the local SEEK to determine what kinds of jobs I’d be good for. The tester told me that I had no errors on the punctuation test, and that I was the only one to do so well. I also took far longer to complete all the tests than people normally do, but I did very well on all of them.
–I found a report card which called me “unique.” Teachers usually liked me, and I usually did pretty well, and behaved well, but I was “unique.” I knew I wasn’t like the other kids, but didn’t know why or how. I just didn’t have their ways.
–I walked oddly. I couldn’t always tell because I couldn’t look at myself. I had to find out from others’ reactions. Once on a trip, I saw my family swinging their arms while walking, and thought it looked ugly and weird. So I made sure to not swing my arms. As time passed at school, kids began saying I walked like a zombie. I couldn’t understand what they meant. Then a janitor said, “Swing your arms!” Huh? Eventually I began swinging my arms again; I had to retrain myself to get it properly coordinated, arm-to-leg.
Once in maybe 5th grade, I walked by glass doors and caught a glimpse of my terribly hunched posture. In 7th grade, I overcompensated and kids began saying I walked like a prostitute. I never have felt comfortable in my own skin, and often prefer wearing a jacket or carrying a bag so my posture isn’t so “exposed” or something I have to think as much about.
–I completely missed most fashions. I lived through them but only had a vague idea of what the popular kids were wearing. I noted some things, but kept missing other things. I had no idea why my middle school jeans wouldn’t go on over my feet without much struggle, because I didn’t realize that pantleg bottoms had now become extremely narrow. I had no idea why the kids jeered at me for wearing “bellbottoms” (comfortable hand-me-down pair of pants).
I never saw rolled pantlegs until college, but wore them that way well into the 00s when my pants were too long. I’d wear something that I saw other girls/women wearing, yet for some reason I’d get funny looks from other women like I was some freak. In middle school they told me my clothes don’t match, said that one boy wouldn’t go out with me because of it, and I didn’t understand it. I have more of a “man’s” vision of fashion and don’t understand why women make fun of certain clothes combinations. Yet a BOY in high school told me one day in passing that “blue and green don’t go [together].” (I shot back, “Yes they do!”) These days, I mostly stick to neutral pant colors so I can be reasonably sure of matching them to my blouse/shirt.
–I love movies, not action movies which are too violent and have too much action, too little meaningful dialogue or character development. But I prefer books because they tell me what people are thinking. In late 2007, I saw a version of “Batman” made in the 00s which my husband loved and followed with no trouble, but it was just a jumbled mess for me that made no sense.
–I trudge through long description rather slowly, trying to visualize, doing better with individual bits but having trouble with seeing the entire picture. However, a particularly well detailed description of a person can occasionally give me a vivid picture which stays for some time. Most of the time, however, I see only shadowy figures. I like to look up fashion pictures so I can imagine what the characters are wearing for their time period. Many times, I’ve even drawn pictures of the characters and looked at them while reading. I can draw decently, though my brothers draw far better. My pictures focus on the person, not on the landscape or furniture around them. My brother Larry, by the way, also writes, and his left-handed handwriting looks much like my writing did in elementary school.
–When I get interested in something, I will usually obsess about it, gathering all the information I can, or writing stories/drawing pictures about it. This is not a lifelong obsession that I know every single detail about, but does usually remain an interest. As a child, I would pore over encyclopedias; as an adult in the computer age, I will often spend hours upon hours scouring Google for the information I seek until I am satisfied. Then maybe, months or years later, my interest will spark again and I will do more searching.
–I used to have a terribly disorganized bedroom, desk, locker. When I got a roommate in college, I determined to be a good roommate, and began making chore schedules for myself. During months when I had no roommate, papers would start littering my room. But when I did have a roommate, I kept my things as orderly as I could, dusted, cleaned the floor, etc. After college when I began setting up housekeeping, I would write down chore lists in my day planner.
Then I started making detailed chore and laundry schedules which spanned several weeks, to be used over and over, until I learned them by heart. This has put a comforting order into my life which I would disdain to lose. Whenever something disrupts my schedule, I don’t fall to pieces, I’ve learned to adapt, but I DO NOT LIKE IT. I also have little comforting rituals for dealing with various things throughout my day, not life-disrupting or annoying like OCD.
–I am very introverted, but do like having a few friends. However, my introversion makes it hard to make friends at times. I am very quiet in groups, disdain small talk, blend into the furniture, but one-on-one can be very talkative (if you’re “safe”). My mom used to say I’d talk your ear off.
–I had an excellent algebra teacher who explained everything step-by-step so well that I aced the class, and was able to go on to algebra-trigonometry with a sound basis and little trouble. I also did well in high school geometry. (Note that they were both Regular classes.) But I always had trouble with story problems, complex fractions, and other things already mentioned.
–I often have trouble paying attention.
–Saw a guy in college who criticized everything about me: my behavior, my clothes, my hair. I didn’t act “right.” I wasn’t outgoing enough, was too reserved, didn’t wear makeup, didn’t dress like I wanted guys to notice me. A couple of years later, also knew a guy who told me similar things and said I’d end up an old maid if I didn’t go to parties, dress right, etc. (He was wrong, by the way, since I met my husband a few months later.)
–The many aspects of driving are overwhelming, too much all at once: difficulty navigating the car, figuring out where to go, watching the road and other drivers, all at once. I especially had trouble parking and turning corners. Occasionally still dream about not being able to negotiate turns and curves.
–Ever since childhood, I have certain OCD-like things: I like equal/even numbers, letters, and other things. My eye will pass over numbers or letters, grouping them and hoping to find them equal/even. It’s hard to explain precisely, since it’s something I do almost without realizing it, in many different situations. If a plastic hangar or a pair of pants I’m hanging up hits me on one leg, I won’t feel right until I hit it against the other leg as well. When I go out walking, if one foot steps on a crack, I’m agitated until the other one does as well (though I keep it all inside).
This does not affect my life overmuch, at least not so anyone notices, but I do them all the time. It’s soothing in a way. I remember starting these things consciously when I was small. Even though I had never done them before, and it felt like I was making a conscious decision to do them, I started them and have never even tried to shake them.
–In college, my first boyfriend noted that when asked for the time, I was always precise, and it drove him crazy. He said other people would say “quarter to” or round up/down to the nearest time, but I would always say “4:02″ or “8:57″ or the like. I was surprised because I thought everybody did that.
Last updated: 12/14/11