nonverbal learning disorder

This is me–This is my life–NVLD

I’m listening to this podcast: Is it You, Me, or NVLD? by Linda Karanzalis, MS, BCCS.

I’ve read a lot about NVLD over the past 20 years, but just hearing it all in one place is tremendously validating, because–as the person doing the podcast says–it’s ignored by the DSM and doesn’t get proper research or help for people suffering from NVLD.  She also has NVLD herself, and knows from personal experience what it’s really like, not the detached view of a researcher.

Because it’s not in the DSM, despite being different from other “official” disabilities like autism or dyslexia, people don’t recognize it or excuse behaviors.  How many of you have heard of autism?  How many of you have heard of NVLD?

The best way I can describe it is “It’s sort of like autism” because people know what that is.  But that brings up images that don’t fit what we’re dealing with.  We’re not, for example, the kid so overwhelmed by sensory input that he has to sit and rock.  Because we don’t have obvious problems, people don’t understand, and we get terribly misjudged and rejected continuously.

I’m now going to vent a bit, including bad language.  People with NVLD, or who know somebody with it, might find this part validating.  People who just wonder what NVLD is, may want to skip this part.  If not, be warned.

But when you read my blog again, Richard and Tracy, because I know you will, it’s also for you.  And for anybody else who’s ever bullied me over the years.  No, I wasn’t making any of it up, I wasn’t able to “change” to suit you, so FUCK YOU Richard and Tracy.

Everything I’m hearing in that podcast is me.  For example (and all these examples are taken from ones given by the podcaster) :

Yes, I identify with a lot of the same challenges faced by people with autism/Asperger’s, but I’m not content to just be by myself all the time.  I do engage socially but keep getting rejected ALL MY FRICKIN’ LIFE.

Yes, people say bad things about me when none of them are true.

Yes, people treat me like I’m just being defiant, or rude, or mean, or get upset when I ask questions, or I get upset because somebody said something but later say they didn’t say that or mean that.

Yes, I have trouble with someone getting upset with me because my thinking tends to be literal.

To this day I feel weird watching a pot because I know it won’t boil until I look away.

Yes, people have tried to manipulate me, and I tend to stay in relationships (of any type) for too long because of either needing help (since I have these issues that make me dependent), or the desperate need by NVLDers for friendships.

I’m not sure, but wonder if certain times in my life where people got mad at me were because I missed that their words did not match up with their nonverbal cues.

FUCK YOU Shawn, who said all sorts of horrible things about me and my character after seducing me, and refused to date me because I wasn’t extroverted.

Yes, I have trouble changing plans even when it’s for something fun, or at least I did when I was younger.  (I’m more flexible now.)  Boyfriends actually chided me for this.  One called me a party pooper.

FUCK YOU Phil’s flying monkey friend who scolded me for not being extroverted and participated in Phil’s attempts to isolate and control me.

So many people have treated me like a baby or I’m irresponsible because I’m afraid to drive.  But when I did drive, my fears were reinforced because my learning challenges caused all sorts of near-accidents and getting terribly lost and other problems.  The podcaster says that most kids with NVLD are scared to learn to drive, unlike their peers.  So FUCK YOU Phil, who endlessly bullied me because I wouldn’t drive, and refused to take me places, so I couldn’t go but still needed to.

Yes, I’ve been suicidal.

Yes, I still get bullied, still hear people laugh at me or make snide comments.  Some I can’t ditch, some I’ve distanced myself from or dropped, some are people in situations where you can’t really do much about it.

Yes, I have trauma from this, and PTSD from all the bullying I’ve gotten over the years.  Rejection Sensitivity Dysphoria sounds familiar, though I’m not sure it’s that extreme.  I can get very angry, and sometimes I express it and get punished, so other times I bottle it up and writing becomes my only outlet.  This is why I post things here, online.  It’s also why I occasionally use cuss words here online, because I never do that in real life speech.  It’s release but violates social rules.

Yes, COVID has been easier for me because I’m already used to only limited social contact.

Most of my teachers were great, but some of them talked down to me, called me babyish, said things like “You’re the only person who never makes noise when someone is talking to you,” said I was behaving wrong or didn’t put my hand up or participate enough or apply myself enough.  One put red marks all over my papers saying I was doing it wrong, even though not only did I have NVLD to deal with, but I was also trying to understand directions in French.

Then there was the supervisor who told me I had to be more sociable because people were “scared” of me.  I’m a kind, gentle person with strict rules on how to treat people, so this was ridiculous.  Executive functioning combined with a long drive and one shared bathroom left me with little time to socialize before work.  I got validated, however, when the owner of the company said people were socializing too much and were supposed to be there to work.

Yes, the podcaster says you can diagnose yourself, pointing to the fact that it is very expensive to get it professionally done and it isn’t officially recognized.  She sees that we’re not making ourselves into victims with the label (FUCK YOU again Richard), because she says it’s a relief to find this out.  It helps you move forward.

She says to get rid of “friends” who don’t support you or believe that you have NVLD, because they are toxic to you (once again, FUCK YOU Richard and Tracy).

Oh yeah, and on her website I see she got stomach ulcers from the stress of school.  So did I!

She described the difficulty in NVLDers finding and keeping friends.  This drives us, she says, to hold onto relationships that are bad for us.

This is also, by the way, one of the biggest reasons why I am so against people who say opposite-sex friendships for married people are VERBOTEN.  If I believed that, I’d have very few friends at all.  I don’t usually befriend males who are, like, captain of the soccer team or a model or anything like that.  They are the geeks, the nerds, the ones who go to the comic book stores at age 35.  They are ones who already understand what it’s like to be an outcast.  Or maybe they’re just an introvert, but that has its own social challenges in Western society.  They “get” me instead of making fun of me.  They’re happy that I “get” them.

And when that happens, when we have things in common and get along, I don’t care if you’re 15 or 20 years younger than I am (that age group is now pushing 30), or if you’re 10 years older than me, or if you’re male or female.  Friends are rare and must be valued no matter where they come from.  So I will fight you to the (non-literal) death if you tell me I have to give up my friend just because he happens to be a guy and I happen to be married.

So that’s how I identify with the traits and observations put forward in the podcast.  I recommend giving it a listen.

I found someone like me who records memories for future self

I was reading a blog on NVLD when I came across a comment by Shava Nerad which read, in part,

My episodic memory is pretty good, but spotty. I can remember things going back to my toddler years. I started trying to remember events of my life when I was about eight years old when I realized that most adults didn’t remember what it was like to be a child anymore, and had the foresight as a gifted kid to try to “record” my memories for my future self so this wouldn’t be my fate (it worked!). My idea of my unfathomably ancient future self, in my mind at the time, was me-at-forty, lol, and here I am at nearly 60, still quite easily remembering my internal states as a kid.

I did this, too: When I was maybe ten, I read the Little House books, assumed they were all based on memory (not knowing that Wilder did some fictionalizing), and wanted to be able to do the same thing when I got older.  So I asked my psychologist to hypnotize me to remember everything.  I also started writing down everything, in diaries and letters and journals, and then backing them up: typing them, copying them, saving them on computers, locking them in fireproof vaults.  As I got older, saving e-mails became a new way of remembering.  Nowadays, I do my saving electronically, which is much easier to find room for and access at will.

So just like Nerad, I can remember many things from as far back as age one because I was determined to remember them.  I wrote down many old memories into Word Perfect; there are many things I’ve forgotten which I remember by looking back through these journals.  They are valuable to me, no matter if anybody else cares about the things I write about.  Even if nobody reads much of the memoirs I’ve posted here on my website, they are there for me to re-read and search through whenever I want to remember something.

And yes, I remember vividly what it was like to be a kid, to be a teenager, even at the ripe old age of 47.  😉  So when I see somebody my age post a comment online like, “Back in MY day, we didn’t act up in class/disrespect our parents/act like today’s spoiled rotten kids/etc. etc.,” I can say, “Um, yes, you did.  You were just as bad.  Spanking didn’t stop you.”

Too bad I can’t post a reply to Nerad.  I mean, I could, but this person’s comment was posted two and a half years ago….

NVLD and missing social cues

An incident with the hubby–which took me entirely by surprise and confused me–meant more teaching him about NVLD and how to deal with it….Though I could swear I’ve told him this before.  Basically, don’t rely on me to figure out through body language or inference that you’ve asked me a question.  You must use WORDS.  And direct words, because vague questions don’t work too well, either.

Anyway, there are some problems from NVLD which can be helped through training: social skills training, a driving instructor who understands learning disabilities, tutoring, sometimes even the hard way because many of us grew up long before NVLD was identified.  (Even now, apparently a lot of people haven’t heard of it, even teachers.)

Of course, it can be hard to fix things as an adult if they weren’t dealt with in your childhood, because now you have to pay your own way–and if the NVLD hinders you professionally, it’s harder to make $$$ to pay for help.  Even a neuropsych exam to diagnose the NVLD can be prohibitive, so you have to rely on self-diagnosis, which doesn’t exactly open up resources for you.  But sometimes you can figure some things out as you go along, though a bit later than other people do.

But there are some things which don’t get “fixed” no matter how much you know about your NVLD or how to cope with it.  For me, I know that I miss social cues, but I only know this because sometimes people get angry with me out of the blue.  But whether they don’t know I need words, or I’ve told them but they either forget (hubby) or choose to ignore it (my narcissist ex-“friends” Richard and Tracy), if they don’t use the words, I’m not going to know the cues are there, either.

It made me reflect that this is the story of my life: Just going along, doing my thing, trying to be nice to people, and all of a sudden somebody yells at me.  Or scolds me.  Or starts rumors about me.  Or accuses me of all sorts of things which just plain aren’t true.

They say if you want to date, you need confidence.  Except how can you have confidence when all you’ve ever known is that people are going to hate or be angry at you without you ever knowing why?

They say, “You don’t need to be shy.  A lot of people like you.”  But how can you stop being shy when the haters keep coming around?  Or when you try to be social, or do things other people do, only to get either ignored or insulted?

Basically, you learn to be shy and retiring even if you weren’t born that way.  I think I was born that way because it runs in my family, but it can also be reinforced over and over again throughout life.

Many introverts have similar problems to the NVLDers because their brains work differently than an extrovert’s, so they have different social needs and conversational styles which lead to misunderstandings.  But NVLD adds on issues that an introvert may not have trouble with.

For example, organizational problems can make it hard for the NVLDer to make it places on time, so they’re labeled rude, self-absorbed, not caring about other people’s time.  But that’s not it at all, as the NVLDer may have been running around like a chicken with its head cut off trying to make it there on time, but ultimately failed.

Or trouble with inference, hand-eye coordination, remembering directions, remembering landmarks, interpreting conditions and what to do when, can all make driving a lot harder than it might be for other people.  But if we refuse to do it, we may be accused of giving in to fear, not being a grownup, wanting other people to be our taxicab, etc.  I was terribly verbally and emotionally abused for this by my ex.  Even though if you aren’t comfortable, you’re not a good driver, and doesn’t everybody say that some people shouldn’t be driving?  Do you really want me on the same road with you?

But because our disability isn’t easy to see–unlike, say, blindness or paralysis or a broken arm–people often miss it and don’t understand.  If a blind person doesn’t drive, you say of course not!  You don’t look at them funny and say everybody has to drive.  Not if you’re sane, anyway.

But if someone with NVLD completely misses your cues or doesn’t know how to properly enter a group conversation, or doesn’t recognize your attempts to make conversation, we are, essentially, blind.  Not exactly physical blindness, because we can see.  But then, it kind of is, because we don’t see what you’re doing.  Or maybe we see it but can’t interpret, so it’s meaningless to us and disregarded just as when we see somebody blink.

So when we go through life experiencing people randomly blowing up at us, hating us, spreading rumors about us, dismissing us as friends or dates, that sort of thing–we learn that people are confusing and unpredictable.  This is why the usual advice doesn’t work for us: talk more, talk less, don’t be shy, be confident.

And also why, for a writer, putting body language into dialogue is like trying to write a dissertation on astrophysics when you couldn’t even pass Chemistry.

Basically, see NVLD as a kind of blindness, and maybe you’ll understand better that the NVLDer or Aspie isn’t trying to make you angry on purpose.  Getting angry at them only makes them upset and confused.

I’m not looking for sympathy necessarily here, but rather to help “normals” (“neurotypicals”) understand NVLDers and Aspies a bit better (NVLD is similar to Asperger’s).  And also to give some solace to NVLDers and Aspies who are going through what I’ve described, to show you that you’re not alone.

 

One way that NVLD affects marriage

An argument today demonstrated vividly for Hubby and me both that NVLD can affect marital harmony.

But this time we experienced a breakthrough that shined light on a problem we didn’t realize was there.

Basically, without getting into boring personal detail, Hubby made a comment that he thought would give me all sorts of information which he did not actually say out loud.  In other words, “subtext.”

I totally missed the subtext because of, well, NVLD or some related disorder (such as Aspergers; I don’t have thousands of $$$$ to get formally diagnosed).

So I made a request which seemed perfectly normal and reasonable to me.  He infused it with all sorts of offensive motivations on my part, because he assumed I caught the subtext.

Fight ensues.  I feel like I’m living with a timebomb.  He thinks I keep saying things and using tones which, well, I’m not at all.  I’m not the kind of person who would.

Somehow during the course of discussion afterwards, he explained the subtext, and he learned that it went completely over my head.  Also that I do much better with literal speech.

I may be a writer, may understand idioms I’m familiar with, but as a child, I took idioms more literally.  Even now I’ll occasionally discover that some concept I take literally, is supposed to be metaphorical.

Education has made me familiar with the concept of metaphor, but unless you tell me a book has it, I’ll usually miss that there’s any metaphor in there at all.  I read the book plainly without inferring; I don’t guess how it will end; I would never have seen the eyeglasses in Great Gatsby as a metaphor for God if the teacher had not said they were.  I often have to back up movies and TV shows and play scenes again, because I have no idea how Sasha ended up dead in the kitchen, for example.

So now Hubby understands that he needs to speak more plainly, verbalize things he thinks can be inferred.  And I wonder how many past arguments are based on me totally missing his subtext, and him thinking I understood it.

I’ve also noted that he keeps putting far more into what I mean by my tone, than what I actually do.  Or being particular about the words I use.  I’ve also noted that people keep taking me seriously when I’m making a joke.

I explained that misunderstanding of, and trouble using, tone are NVLD problems as well.  And that I’m an introvert forced to speak on the fly, so I don’t have time to come up with the perfect words.

(Introverts have to think before they speak.  This makes it almost impossible for me to think of the perfect words.  And he discovered that I don’t see the difference between using one particular word or another, while he does.)

(This is why I prefer writing to discuss things with people.  In person I say the wrong thing and sound awkward and can’t get my meaning across, especially when interrupted.)

I explained that it’s a lot easier to understand expressions on actors on TV, because I can back up the tape, and stare at them fully, unlike in real life, where if you stare they’ll think you’re creepazoid.

(Unless you’re German.  Apparently Germans keep super-steady eye contact, unlike Americans, who flick our eyes every few seconds.)

It also doesn’t help to be uncomfortable with eye contact.  Even after 22 years, I don’t even feel comfortable having prolonged eye contact with the hubby.  Even when we were dating, the concept of “staring into each other’s eyes” made me uneasy.

And then I start wondering about past relationships and–I start wondering if it’s too much navel-gazing 20 years after those relationships ended, considering that I already explored those relationships in-depth here, and much of the necessary context is lost in the mist of memory.  And, well, those guys also ended up annoying other people or treating other girls the same, so maybe my NVLD wasn’t the only reason for arguments.

But in this case, it sure didn’t help.  Hopefully things will go more smoothly after this, more understanding on both sides.

 

 

 

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