My NVLD in a nutshell

by Nyssa McCanmore
Posted on July 2, 2010August 26, 2020

I have always been quiet and shy. My college adviser and writing teacher told me to not change my quietness, my not being a “great talker,” because what I write says a lot.

I believe I have NVLD (also NLD, nonverbal learning disorder). If you go here, you’ll see a full treatment of why (and what NVLD is), ranging from my clothing preferences to social ineptness, such as my difficulties even in making small talk or modulating body language while speaking to a stranger. (I haven’t a clue if I modulate it even when I’m not speaking to a stranger; I just don’t think about it.)

My constant loneliness is a big, red sign of it. 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. After a while, I got sick of people giving me weird looks or criticizing me for not knowing what to do in a given situation.

I believe I have either NLD or Asperger’s, since I hear that many of my problems are not common to introverts but are common to NLD or Asperger’s (though the more I learn about Aspies, the more NVLD seems more appropriate).

I can’t get an official diagnosis because I have adult responsibilities, don’t have the time, don’t have a school to help pay for it, don’t have a way to pay for such a huge expense when I have so many other things clamoring to be paid for: bills, debts, food, health problems.

After all, the NVLD can’t kill me, but skipping health tests could. So self-diagnosis is my only way to find out why I’ve always been so weird–I always knew there was something different about me and how my brain works, long before I heard of neurological disorders–and what possibly can be done about it.

And hey, bonus, NVLD also brings assets, such as being detail-oriented, excellent with punctuation, spelling, reading, typing–all useful if you’re a writer or clerk. We can’t all be the outgoing insurance agents or salesmen or politicians or lawyers; somebody has to do the filing!

An old friend once said I’m great at befriending the “fringe people”; this is probably because I accept the oddballs and geeks, after my own experiences with being misunderstood and bullied. I embrace NVLD, since to my neurological differences, it gives a name, a reason–and a community of people just like me.

As an aside, not only have I obsessively researched this since 2000, but researching this also led me to learn about Asperger’s–long before the public had heard of it–and reject it as a possibility. NVLD is still not known to most.

I started with the symptoms and worked outward; I knew from childhood that I was different from other kids, but did not know why. I found notes written in diaries 20 years ago which describe things I did without knowing why, but which I later discovered fit with NVLD. I also looked it up because I had so much trouble with driving.

Reading about NVLD was like reading my entire life story, not just some social issues but handwriting, learning to ride a bike late, getting lost even with a map while driving, the same driving problems I have, and all sorts of other things–academic, social, visual-spatial–which I don’t have room to list here.

Before Richard moved in, I told him I believed I had NVLD, and explained it a little, so he wouldn’t think I was weird because of my physical and social awkwardness, trouble catching many social cues, and various other things. I expected he would understand, cut me slack, verbalize more if I missed a social cue, and be fine with my idiosyncrasies.

I had no idea he would later use this against me and accuse me of being a victim, say I just needed to “push through it.”

And no, Sally Normal and Joe Regular, we can’t just ‘get over it’ and we can’t just ‘be normal’. The brain is a flexible organ and we do learn, but we will always be Aspies. –Rudy Simone, Why people with Aspergers seem so awkward around others

2. You just need to try harder. Sorry, but no. My brain does not work the way yours does. There is something the matter with mine. It’s not a matter of will, or effort. It’s a matter of trying to figure out how to cope. You wouldn’t tell a blind person to try harder to see, would you? –Peter Flom PhD, Things not to say to LD people (or their parents)

I hoped that as he learned about learning disorders while working for a Psych degree, he would understand me better and begin to realize what I needed. Instead, he just got more adamant that he was right and I was wrong, based on a bit of questionable information in his textbooks which does not match the latest research or the opinions of NVLD experts.

I, on the other hand, already spent almost a decade and probably hundreds of hours researching NVLD, using documents from NVLD experts such as Sue Thompson, and reading accounts by people officially diagnosed with NVLD. He based it on a tiny part of knowledge of what I had experienced in my own life, when I had a far more comprehensive knowledge, based on a long memory and things I pondered over the past decade or so.

This video, a lecture on social emotional learning disorders, talks about differences in learning disorders, levels of difficulty, classification, etc.

(This is from the 2004 UC Davis M.I.N.D. Institute Summer Series on Neurodevelopmental Disorders. The lecturer is Meryl Lipton, M.D., Ph.D., on “Social Emotional Learning Disorders: The Dyslexia of the 21st. Century.” Note: The URL no longer works, but I’m having trouble finding another one.)

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 have an awful time telling the difference between Asperger’s and NVLD, and whether or not they’re autistic, so being scolded by Richard was not going to make me think I must be wrong. I knew far better than he did what I struggled with.

I never had a chance to put all this evidence before him: After he laughed it off and disregarded everything I said about it, I never trusted him enough to say more than a small bit of what I dealt with.

One big piece of evidence was my lack of social connection, which Aspies and NVLDers struggle with the most. Since I left school, I found it extremely difficult–even more so than in school–to make friends of any kind, let alone close ones.

Also, around age 10, I had enough problems that my mother took me to a psychologist for a while. First, I went to stay with my aunt for a week or two. The whole time, she picked at everything I did or said (which drove me nuts), then threw up her hands and told my mom, “I can’t do a thing with her.”

I’m not sure what my “problems” were that bugged her so much, only that I had troubles at school with the work and with the verbal bullies. I mean, come on, this is the same woman who verbally abused and criticized her own mother when she came to visit that week.

I had some trouble with etiquette, because my aunt got after me for not saying “goodbye” when people said it to me, and for taking a book when going to visit people–though I was a little kid visiting adults and needed something to do besides sit there listening to boring adult conversation. I didn’t realize you’re supposed to say “hello” when somebody greets you, or they think you’re a snob.

But otherwise, I was just being me, and wasn’t aware I had “issues.”

My aunt, who was married to my dad’s brother, and constantly at odds with my dad, thought my dad was somehow to blame for my “issues,” that he or my brothers probably molested me, even though they never did any such thing and had nothing to do with this. Now, she didn’t say anything about that until my mom and dad had some issues in 2007.

But when I was ten, my aunt thought spending a couple of weeks with her would somehow “help” my “problems,” whatever they were. When it didn’t make a difference that satisfied her, she suggested a psychologist in Michigan.

Every week, my mom drove me all the way up to Michigan, where I saw the psychologist for an hour, then we got dinner from a McDonald’s drive-through or a Jack-in-the-Box. My mom says the psychologist helped me a lot. I’m not sure what he did, exactly, but apparently he gave me social pointers.

He was also somebody to talk to, not just about my problems, but to whom I showed my series of “Space Blimp” stories (based on a dream in second grade). For a time, I also did group sessions with a young teenage boy and his little sister, where I read the stories.

Still, in middle school I was so closed off that one classmate termed it years later (during a Facebook chat) as “a wall” around myself, but I didn’t even know I was closed off. I just was the only way I could be, with all the bullies around me who criticized everything about me, and just a few nice kids to talk with.

This same kid wondered why I dressed so oddly; I had no idea what the fashions were, and just wore whatever my mom got at garage sales, caring only for what was comfortable. But I got teased for how I dressed, without knowing why. I hated school so much in seventh grade that I counted the days till summer–while it was still fall.

How could this just be me being an introvert who’s otherwise normal? NVLD would explain all of this, because these traits are quite common with NLDers, while an introvert can still keep up on fashions, wear things that aren’t as comfy if they look good, know the basics of social situations, and the like. I examined various learning disabilities and the like, such as ADD and Aspergers, and this one fit like a glove.

Table of Contents

1. Introduction

2. We share a house