Nyssa's Hobbit Hole

Date: September 8, 2012

My Mental/Visual/Touch Stimming: Could it be Asperger’s?

To me, NVLD and/or Asperger’s is a fascinating look into the differences in how our brains work.  I find the differences awesome, and hope that one day they will be accepted, not labeled “disorders” which must be “fixed.”

They also explain many things about myself that never made sense before, make me “normal” among people who have these same “abnormalities.”  It makes me okay the way I am.  They’re also not related to introversion, so can’t be explained away that way.

NVLD/Asperger’s quickly became, back in 2000, one of my many long-term, obsessive interests, because finally I had a reason for why I do the things I do, why my brain works the way it does, why others don’t do these things that seem perfectly normal and logical to me, or which I’ve always done but not known why.

For example, I have various little things I do 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 alphabetize my music and movies.  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.  I do the same thing with my fingers.  I keep nibbling on the inside of my mouth without realizing it.

It doesn’t always happen, but as I noted, seems to increase in times of anxiety.  For the past 2 years, while dealing with a very emotionally traumatic situation, I’ve been doing these things more often, and added a couple of new ones.  Now my eyes vaguely cross a lot, intentionally.  Not sure why.  I try to stop it because it gives me a headache, but do it anyway.

I recall, as a kid, one day just looking at the ceiling and deciding I would start doing one of my stims, which I have never stopped doing: counting, looking for even numbers in things, such as tiles on the ceiling.

I count letters in words in titles or signs, hoping for even numbers of letters or words as my eyes sweep back and forth over the word in various patterns, doing this until it “feels finished.”  I look for symmetry.

I prefer round letters and numbers because they make easier patterns; I’ll even make a pattern with an individual letter or number.  As a child, my favorite number was 8 and numbers related to 8, such as 16–because 8 is a round number.

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

I do it to titles on books, to words on a page I’m reading, to tiles on the floor, to the iconostasis (wall with all the icons) at church, to the golden objects (crosses, etc.) on the altar, to the incense holders hanging.

I count them, see there’s this number on one side, this number on the other, back and forth, until finally the service begins.

I see a line or a word and think of the capital letters opposite other capital letters, the lowercase letters in contrast, try to form a pattern with the capitals on the outside.

An embedded web video stuck on an endless loop (such as in forum avatars or on 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.  I don’t even know how many times; just until it “feels finished.”

I’ll often look at a word or phrase again and again after having just read it, until I’m “done.”

And my brain has done these things for as long as I can remember.  It’s usually not at all related to anxiety, though anxiety can increase the frequency of some of them.

Riding in a car also sometimes drives me crazy as I start forming patterns with every sign and wire I see.

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

As a child in Kindergarten, and even now, I see numbers as male or female.  Male: 0, 1, 4, 5, 7.  Female: 2, 3, 6, 8, 9.  Yet 16 is female, and so is 20, even though they are mixed.

It’s something about the way they look.  I’m not sure what, exactly, because 0 and 5 are round, same as 3, 8 and 9, and 2 has a straight line just as most of the “male” numbers do.

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 (something about, I haven’t really “thought” it unless I can feel the word in my throat).

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.)

It’s words I hear or read, or a few near-constant stock phrases which have been with me for years/decades (such as “Lord have mercy” since I became Orthodox, and “please forgive me” before that).

(In fact, Orthodoxy encourages stimming on “Lord have mercy” as a spiritual exercise.)  Sometimes I’ll start humming to get an unpleasant thought out of my head.

Up until now, no one has known about these mental/visual/tactile stims which I have done all my life.  Because they’re mostly in my head, nobody knows they’re going on.  Only recently have I told my husband these things go on in my head constantly.

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 they 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:

However, I do the crack thing, I have to step on the cracks, or i have to step on a crack with my left foot, then step over the next crack with my left foot so that my right foot touches the next crack. I must say, you’re right about looking insane when walking. I have jumped to get to the next crack, and every time I walk it’s different. Sometimes it is not stepping on the cracks, sometimes it’s stepping near the cracks. It’s very calming.

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.

Everybody stims, Aspies and NTs alike and usually they’re unaware of it.

Aspies tend to stim more often than NTs and it tends to be more for stress/anxiety relief.

Most aspies won’t be aware that it’s a relief mechanism, they’ll probably just tell you that it feels good.

Virtually any kind of repetitive behaviour without a specific point other than “feel-good” can be a stim. The difficulty involved in stopping the stim and the frequency at which it occurs is what distinguishes an aspie stim from a neurotypical stim. –Gavin Bollard’s comment, Life With Aspergers: What is Stimming

 

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, in defiance at musical manipulation).

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 stand still without a lot of effort.

My husband 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 don’t know, but I do know that I’ve done most of these stims since childhood.  I am getting some new ones, however, due to excessive anxiety, which is quite annoying.

Threads on this from the Asperger’s Wrong Planet forum, with which I identify so strongly that I keep saying, “Yes!  Yes!”:
Mental Repetition of Phrases/Words?
Mental Stimming

I started watching Mozart and the Whale and I realized that the guy in the movie, Donald, when he is looking around he notices things and makes combinations and associations in his mind, which is also what I do.

I do it at home and also when I am sitting somewhere in public. While seeing him in the movie, I realize that when I am doing this my eyes must be moving in a way that must come across as very bizarre to other people.

…Anyway, do u have the same thing? do you look around and make combinations all the time and observe lines, numbers,colors etc —How do you move your eyes?

Why, yes, yes, I do.  Yes, I trace things with my eyes, as well.  From that same thread, I also identify with this:

For instance, looking at a sentence on a billboard, I end up counting the letters and spaces so I can find the figure or space that is the middle of the sentence, the fulcrum of symmetry if you will.

Or if say a sentence has an odd number of words, like 3 or 5, i cut the sentence in half and count how many letters I’d have to add to one side or the other to make them symmetrical.

In case you didn’t notice, I have huge issues with symmetry and constantly striving to achieve it in everything I observe.

You’ll note these threads also comment on perseveration, which is related to the same things going around in your head all the time, or a child with Asperger’s getting so latched onto a subject/interest that you can’t get him off it.

I do that constantly, whenever I’m going through some emotional issue, or I’ve gotten interested in some new thing, such as ancient Egypt when I was 12 (or re-interested in some old thing, such as my curiosity in NVLD/Asperger’s taking a rest for months and then popping up again and I have to do more research on it), or I’m so deeply interested in a writing project that I think about it while doing other things.  It keeps going whether I want it to or not.

It’s always been this way.  No matter what it is–perseveration, or mental stimming, or visual stimming–my mind is constantly very busy.  It makes it hard to fall asleep sometimes.

Perseveration is the reason I would research as much as I could into whatever I was writing about; of course, before the Internet exploded, it was hard to find good materials.  Now, I have them at my fingertips.  It’s a perseverator’s dream!

When I got curious about Orthodoxy in 2005, I became so obsessed with it that I bought books, printed hundreds of website pages, went on forums, spent months–maybe a year–researching it heavily before visiting the local Orthodox church in November 2006.  My research filled a whole box when it became far too thick for its accordion file.

Related to perseveration and thoughts constantly replaying in the head:

Inability to get over it.
I blame the long term aspie memory for this. Many of my present actions are shaped by my past experiences. I find the past very difficult to let go of and it permeates into everything I do.

I’m terrified to let people near my stuff because of something that happened when I was in year 5 at school.  I’m difficult and resentful in certain situations at work because of a problem that happened four years ago (that everyone else has forgotten).

It’s even becoming something of a catchphrase of my wife’s; “Get over it!”. Of course, that’s just the point… I can’t. —Life With Asperger’s

One of the most effective coping mechanisms I employ is “conversation recording” where I attempt to remember an event in its entirety for later analysis.

In aspies with particularly well-developed coping mechanisms (typically, older aspies), event recording is virtually “second nature”. It often occurs without any conscious decision on our part.

When an event is “recorded”, a lot of things, particularly tone and body language which are not accessible at the time are retained.

The funny thing about this type of retention is that although a lot of input is captured, it usually isn’t available to me until I review the “recording”. Something I may not do until hours or days later – and often, unless I have a reason to do so, not at all.

I’m in the habit of reviewing “recordings” whenever I get an unexpected response from people or whenever I deem that a conversation is important and could be carrying more information than is immediately obvious. —Life With Asperger’s

Yep, I do that.

A lot of things come back to the aspie memory. Aspies often have very clear memories of events and quotations.

In conversation, they may drop a remark which links back to a particular memory but even if the NT was present at that event, it could have been years ago, or the particular part of the event to which the Aspie is referring may not form a large part of their memory. —Life With Asperger’s

There’s no doubt that vivid memories (trauma) are remembered both by animals and people. There’s also little doubt that these memories, both negative and positive affect our future actions.

Where I think the aspie differs is that key memories don’t necessarily need to be large or traumatic in order to be “vivid”.

“Can’t move on” is a phrase that is often associated with Aspergers. In fact, I’m sure it appears somewhere in the official criteria.

The inability to move on is due to a number of factors including; change resistance, routine, insecurity and memory.

Children with aspergers seem to take things in like sponges and retain them forever. They revisit those memories over and over again and after a time, even the smallest and least traumatic of them can become a major influence on their lives. —Life With Asperger’s

How can a having a good long-term memory be responsible for depression?

The key to understanding this is to approach it from the point of view of an NT [neurotypical, or “normal” brain].

Most of the time, it seems to me that detailed memories just aren’t available for NTs without external assistance. By external assistance, I mean the use of video cameras or photo albums.

In the movie One Hour Photo, Robin William’s character says, while looking at birthday snaps, “Nobody takes a picture of something they want to forget”. I think that this is particularly relevant to the issue because it means that NT’s tend only to remember the good things in any detail.

The Aspie however, with their long term memory often has perfect recall of past events and conversations. They will spend hours analyzing a conversation that occurred years ago and will often take negative feedback on board even if it was provided in the heat of the moment.

The long term memory of the Aspie therefore can be their worst enemy for dredging up guilt and other negative emotions.

As I mentioned in an earlier post, I’m not entirely where the lines are drawn between Asperger’s and Obsessive Compulsion. It is obvious that people can suffer from Obsessive Compulsion without having Asperger’s Syndrome but I’m not convinced that it works the other way around.

To be specific, I think that the Asperger’s condition carries with it certain obsessive compulsive influences which manifest themselves in different ways. —Life With Asperger’s

On the Fear of Driving: Why I First Looked Into NVLD

I don’t like to talk much about my fear of driving, at least not in person.  I prefer to only talk about it on my blogs, where I can be anonymous and really open up.

People tend to not understand, have various misconceptions about those who don’t drive.  They think we’re not facing up to our responsibilities, as if determination is all we need.

But people are also afraid of such things as heights, flying and spiders, and with reason because all these things can be deadly if not dealt with properly.

Yesterday I watched an episode of Laverne and Shirley in which Laverne reveals she’s afraid to drive.  I felt her pain because I have the same problem.

However, in typical sitcom fashion, her problem was resolved in 20 minutes by Shirley getting her to learn how to drive.  [sarcasm on] Yeah, because all we need to get over our fear is to learn how to drive. [sarcasm off]

I learned how to drive 22 years ago, 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.)

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.

This may be because of NVLD.  My trouble driving, in fact, is the reason why I looked into NVLD in the first place, in 2000.

I’d been well aware of my social problems for years, had even seen a psychologist to help me with them back in elementary school.  I discovered in an old diary entry from 1992 that I had some knowledge even back then of an NVLD-like disorder which I identified with:

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 [my friend’s] house that night [when I was with Peter in South Bend].

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. 

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!

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.

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.

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.

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 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, and 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]);

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, 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 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.)

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 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.

My ex-fiancé stayed a summer with my parents and me.  He took a few jobs while there.  He scolded me for not knowing how to get around the city I grew up in.  He said he knew his way around much better than I did after only a few months.

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, 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.

 

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