The world is a confusing place for children. At least, I assume–I don’t know how all the children in the world view their circumstances, but I know it confused the hell out of me. There were too many rules, which would have made sense if they’d been related to anything I could understand as being important. You can’t talk about any given subject for more than ten minutes, tops. You have to watch other people for their reactions; if they look bored (which was a value I didn’t quite grasp) you need to stop doing what you’re doing. You have to take math even though it’s confusing and frustrating and makes your head hurt. You can’t sit by yourself on the playground and read books, even though your teachers are always telling the class that reading is important. Some of these strictures, I understand now: hard or not, I needed to know how to do simple arithmetic. And I understand why my parents and teachers were concerned about my reading instead of socializing, even though I vastly preferred reading. I even understand the rules of socialization, even though I need to constantly keep them in mind when I’m talking to someone. I just wish I’d known then what I know now.
*
Having my clothes laid out for me was always a sign that we were going somewhere. Most days, when I was growing up, my mother would allow me to pick me own clothes; she’d sigh when she saw what I picked, but she let me wear it. And since I wore a uniform to school, she didn’t need to worry about my embarassing her in front of my teachers by showing up in tie-dyed sweatpants. But when we had an appointment or were visiting extended family (usually the latter) she would lay clothes out for me. So when I woke up one Saturday morning when I was eight, I knew even before she told me that we were going somewhere. We were going, she explained, to see a doctor in Oakville. I didn’t know why we were seeing a doctor in Oakville, since my regular doctor was right there in Hamilton, but I didn’t really care either way.
The doctor’s office was much fancier than my doctor at home: wall-to-wall carpet and nice leather chairs. When I was ushered in to see the doctor, her office looked more like a classroom than a proper doctor’s office; where were the needles and stethescopes? The tests she had me undergo, too, felt much more like schoolwork than anything medical. I was asked to write a short story in under ten minutes; when I failed to finish it in the alotted time, she asked me to describe how it would have ended. I was asked to create shapes with a set of hexagonal wood pieces, and to put a series of pictures in chronological order. There were math problems. I was given a questionnaire to fill out, evaluating my feelings towards my family, my school, and my classmates, and how I thought they felt about me. In the final evaluation put together by the doctor, “family acceptance” got a 25; “peer acceptance” got 5. Ater the doctor was done testing me, she spoke to my parents while I played in the waiting room. I remember there was a big fuzzy bird puppet, the kind that’s suspended on strings; I wanted one for myself.
The evaluation came in the mail several weeks later. I didn’t see it; I don’t think I even knew it had arrived. Nor do I know what I would have thought if I had known; I still didn’t realize what the appointment had been about. Like the confusing, seemingly useless rules, I had spent much of my educational career being shuffled from resource room to tutor without any seeming rhyme or reason; I just accepted the doctor’s appointment as one more in a long line of odd things my parents and teachers made me do. So I didn’t know at the time what was in that evaluation. My mother did. After spending several pages describing the strengths and weaknesses the doctor had observed, she gave her diagnosis: non-verbal learning disorder.
NVLD is a disorder that convers a very broad range of symptoms. Often it’s grouped in with Asperger’s, but it’s milder. Still, it shares a lot of characteristics with ASD; poor socialization, lack of understanding of non-verbal communication, poor math and spatial skills, inability to manage time or organize properly. These days, if my diagnosis comes up in conversation, I usually shorten it to “Asperger’s” as it’s far more likely the listener will have heard of that, and can make sense of it. But I didn’t tell anyone at the time. I didn’t tell them, because I didn’t know.
My mother had a decision to make when she saw that diagnosis: what was she going to tell me? She already knew I had low self-esteem when it came to schoolwork and socialization. I was frequently anxious and high-strung; homework was a pitched battle every night where I screamed and sobbed and dropped my pencils and pleaded an upset stomach and did anything I could think of to keep from doing my math problems. I thought school was a form of torture. What, she wondered, would I think if she told me I had a learning disorder? How would I react? Would it make anything better?
It’s impossible to know at this distance; I don’t have a window into my eight-year-old mind. Maybe my mother made the best of a bad situation. But what I do know is this: the words “learning disorder” were not spoken in our house. I was not told of the contents of the doctor’s reports. Instead, my mother told me that I was better at some things than others- better at reading than math, better at history than science, better at storytelling than socializing- and as a result, I’d just have to work harder in some areas. So, no change.
Did she think I didn’t realize? No, I didn’t know I had NVLD. But I knew damn well I was different. I felt like a clock that was ticking out of time; something was just off about me, something that my classmates could scent with a child’s natural impulse to torment the different. Often when I pictured myself as a child, I thought of myself as jello-o that my parents and teachers were trying to force to stand up straight; I kept sliding down, no matter how hard they tried. I was limp and useless. I didn’t fit.
*
“Hey, let’s see how long Laura can go without talking!”
Special interests were a big thing for me; almost always they were TV shows. Narratives made sense to me. They helped me make sense to myself. First it was Relic Hunter (every afternoon at four on channel seven) then Beastmaster (Sunday mornings at ten; my motivation to get up earlier than I might have otherwise) then Law and Order (one o’clock on Bravo; I didn’t realize it at the time, but I was nursing my first baby bisexual crush on Jill Hennessey) and then The X-Files (eleven o’clock; more than once I got caught sneaking down to the basement to watch it.) I also went to camp every summer; an idea of my parents’, hoping that it would help me develop my lacking social skills. Instead, I became known at the girl who talked. I still do have special interests, although I have a better handle on them; ask me about The Killing and I can go for hours. Now I know that I can only discuss a single subject for so long before my conversational partner gets bored and wanders away. But at the time, I didn’t know what else to do, how else I was supposed to relate to people. So I talked their ears off, recounting plots, describing characters, repeating favourite lines until they begged me to just be quiet. I think it was one of my camp counsellors who suggested the “no talking” bet; as I recall, I lasted ten minutes. Camp was not the success my parents had hoped for.
School wasn’t much better, although I did develop some tricks that helped me get by. Volunteering in the library, for instance; the soothing repetition of stamping in new books gave me something to do in my empty lunch hour, when I didn’t have any friends to occupy my time. Teachers tended to like me, if I liked their subjects; if you’re trying to interest students in something and you’ve got a girl in your class who will happily prattle about narrative theory for hours, that can only be seen as a good thing. After I was done with the torture of math, science, and gym (I got a 50 on my Phys Ed report card in ninth grade; I think the coach just wanted to get rid of me) I settled contentedly into a stream of English, History, and Drama classes. My classmates were either spiteful or indifferent towards me; more than once my mother pulled me out of school because I was being threatened and all the principal could do was wring his hands over it. I had bottle caps flipped at my head, was tossed down the stairs, was described as “a loser who had no friends” but by this point, I had learned to bite back. Who cared what they thought? They weren’t the teacher’s pet. They hadn’t read Dickens. Who needed friends when you were smart? Not me. I was lying to myself, and on some level I knew it, but it was all I had. I dressed in baggy sweaters and jeans and refused to wear pink because what was I, some kind of conformist? I wore the badge of my oddness on my sleeve and refused to listen to my mother’s pleas that I try harder to fit in. Why should I try to fit in with them? Fuck my classmates; they hated me, and I returned the favour.
The only time I genuinely felt the need to conform was when I signed up for the local youth theatre. Footloose (I know; irony, right?) offered me the chance to make friends who were from other schools and hadn’t seen me spit on the social hierarchy. I also developed a crush on one of my castmates, who, while he thought I was odd as everyone else did, was at least somewhat kind to me. More than once, though, my friends grew frustrated and asked why I couldn’t just be normal. Why did I talk so much? Why did I laugh so loud? Why was I all elbows and knees and bad at dancing? This hurt more than the previous rejections; I wanted these people to like me. In my journal, I described myself as “a stupid little puppy trailing after [them.]” I’d also been doing some research. I’d discovered the concept of Asperger’s almost by accident: one of my classmates had it, and he and I seemed to share the same difficulties, although he struggled more than I did. In the car, riding home after rehearsal ended, I asked my mom if I could be tested for ASD; I wanted to know what was wrong with me.
“You don’t have Asperger’s,” she said. “You have non-verbal learning disorder. We got you tested when you were eight. Don’t you remember?”
My world was rocked. On the heels of shock and relief–finally, I knew what made me so despicably different–came anger. How could she have kept this from me? Didn’t she understand what it had been to know I was wrong and not understand why? Self-hatred warred with resentment and loneliness. I wanted friends. I wanted to be normal. But I didn’t want to change myself for other people. No matter what I did, it seemed, I was doomed. But at least I had some kind of shield now. When my friends asked me what was wrong with me, I had an answer: “I have NVLD.” A doctor’s stamp explained what was wrong with me, and it offered relief and hopelessness in equal measure. I had an excuse. I had a label.
It’s hard to bring this story to an end, because honestly, I don’t know if it has one. I graduated with honours and went away to university. I spent most of my first two years huddling in my room, unsure of how to go out and make friends. Gradually, I emerged, with the help of the campus chaplain and the Drama department. Acting has always been the greatest escape for me; I can’t quantify why. Maybe it’s because it allows me to disappear, become someone else, mold myself into the person I ought to be. Or maybe it’s because theatre majors are, as a rule, odd people; there’s more acceptance for the offbeat onstage. I also re-discovered the joys of being the teacher’s pet; every time one of my professors singled me out with “I know you have something to say about this,” I glowed with pride. If I didn’t fit, at least I stood out in a way that worked, that people liked. My classmates no longer looked on me with revulsion; I was still the girl who talked, but I was also the girl who poured forth endless information about the aesthetic movement, gender and sexuality in Elizabethan England, and the history of the horror movie. I’m months away from graduation, and while I’m proud that I proved my eighth-grade science teacher wrong when she said I would never go to university, I also look on the future with dread. Where will I go? What will I do?
It’s been seven years since my mother finally disclosed my diagnosis. When she first told me, I used it as an explanation: “I’m sorry I’m so weird, but it’s not my fault; I have a disorder.” Now I use it as a badge of honour: “Yeah, I have NVLD. And I’m about to have a university degree. And I’m a writer. What else?” I haven’t found my way yet, but maybe I’ve found something better- a new mold, something I fit into because I made it for myself. If I ever go to a high school reunion, I probably won’t be wearing sweaters and baggy jeans- I discovered the joys of sundresses a few years ago, once I outgrew the idea of clothes as defiance. But if any of my old classmates identifies me, again as the friendless, talkative, loser, all I’ll do is smile. Like I said, I can still talk your ear off. I still can’t dance. I can still recite episodes of TV from memory. But there’s a key difference separating me from the girl I was at sixteen. I share her fears, her disabilities, and her strengths. But I’m not ashamed of them anymore. Not of any of them.
Great piece! That disclose/not disclose stuff is tricky business.
When I was in the 4th grade or so I discovered that my brother’s (2 grades younger) report card said he was more than one grade level behind in reading and would have to be pulled out with a reading specialist to help him catch up. I was an excellent reader and I teased him mercilessly for this. I believe I even used the R-word (I know! I’m sorry I feel terrible about all this now). My mom reamed me out of course but she told me she had planned on never telling my bro about what the report card said and if he asked she would have told him he was perfectly normal. I understand she didn’t want to crush his confidence but it seems a little gaslighty to me. My brother knew he struggled in reading (he continued to, many grades later though he was never diagnosed with a learning disorder) he avoided it all the time and I think it would have been kind of a relief to have a parent say “We see you, we’re going to help you.” But having a big sister make fun of you also works.
“But having a big sister make fun of you also works.”
Actually, no.
hey look I feel you but all of this shit is super complicated especially in the adolescent years. not going to quantify this with my ability/family ability identity, but who knows fucking anything at age eight?
Okay, if this was directed at highjump, please ignore but if it was directed at Tessellation please read, the following:
That wasn’t Tessellation’s point. Apparently, highjump is no longer school age, but still believes the fact that their brother received help as a result made it okay to make fun of their younger brother. It’s that, and ONLY that, that Tessellation had a problem with, otherwise, they would have highlighted the use of the R word that highjump used against their younger brother, dontcha think?
Thank you for writing this! You express yourself so clearly in this piece and truly paint a picture of your experiences with getting diagnosed (but not knowing about it), with bullying, and with “finding” yourself in university. Growing up with a learning disorder is hard (lol understatements), and opening up about my own when I got to college was one of the best and most empowering things I’ve ever done – I’m so glad you had the same experience. Keep talking, keep writing, and keep being proud.
Oh, man, my heart aches for little-kid you.
I get why parents are so scared of the label. They are afraid they did something “wrong” to make you the way that you are, they are worried that other people will use the label to reduce their expectations of you, and they are terrified about what it all means to your future.
My son sits right in the room with the neurologist or psychiatrist or neuro-psychologist. It is no great mystery that he differs from his peers. He knows his brain wiring makes him good at remembering weird details about science but also results in social interactions with peers being a totally mystifying experience. And his father and I can look at each other, wearing our Star Trek shirts with the I.T. job, and shrug and say, yup, that sounds about right.
Damn I feel you.
This is a good writing. My parents did the same thing about not telling me what I got labeled when I was 8, and I’m still trying to suss it out (they apparently forgot they took me for tests at all, since around the same time, my baby brother was going through a lot of PT and OT for speech and walking and stuff – once when I asked about it, they actually described it as though *I* was the one in occupational and speech therapy??). It’s really frustrating! I’ve almost given up at understanding, since I’m 30 now and sort of past the point where knowing The Label will make much difference, but it would have been awfully nice to know that it wasn’t just depression/anxiety I was dealing with in college, but some kind of ASD or learning disorder, too. (I mean, I recognize it NOW, but I didn’t even know those were Things back then.)
I’m really happy for you that you’ve been successful despite the frustrations that I’m sure you’ve had. I hope you continue to be!
I’ve never been officially diagnosed with anything, but I know I have some kind of disability, whether it’s AS or NVLD, I can’t say for sure. It doesn’t really matter, as I’m an adult now and just knowing I have a disorder helps. But as a kid, I had no idea, and I felt so lost and hopeless. My mother was virulently anti-psychology, so when the school wanted to put me in special ed. because they thought I had ADHD, she fought them tooth and nail.
I don’t know how it would have turned out if she’d lost her battle or if, god forbid, she’d worked with them to figure out a solution. But if I’d had a name for what I was dealing with, maybe that would have helped. I gave up trying to get along with most of my classmates in middle school but even my friends just barely tolerated me (though I didn’t realize that until sophomore year or so). I’ve never felt worse than the first time my best friend (or so I thought) interrupted a one-sided conversation I hadn’t realized was one-sided to tell me that I should shut up, that I was stupid and that I should just die.
I wish I’d had words to say, “I have a disorder and you’re a horrible person”. But I didn’t. And that scenario repeated itself for a year, until I finally realized that, stupid or not, the way I was being treated was not okay. I just wish I’d been able to head it off sooner and have a weapon to use against toxic people like her.
Thank you for writing this article. It’s nice to be reminded that I’m not alone.
I feel the talking too much on my favorite topics thing. Whenever I take the Eyes Test, I interpret about 2/3 of the expressions as “this person is tired of hearing about plants.”
(Eyes Test, in case you want to see a lot of people who are variously bored, tired, irked, horrified, sad, amused or furious that I’ve told them so many fun plant facts.) http://kgajos.eecs.harvard.edu/mite/
In the eyes test a lot of the men look “aggressive” or “threatening,” while a lot of the women look “flirtatious,” “interested,” or “scared.” I wonder about the source of the pictures. It also makes me intensely aware of how often I fake those expressions to get a certain reaction.
Wow. My sister has some sort of learning disorder that manifested itself exactly like this when she was in 3rd grade. It was really hard for me to learn how to relate to her, and it’s still hard to continue that relationship. It is emotionally and mentally draining for me to interact with my sister, but it’s obviously so much more draining for her. But everything that I’ve read about people with NVLD has helped a lot, so thank you for this piece.
My daughter has a touch of this ( along with several other diagnosed issues) – I mean the Doctor Who talk, for HOURS and HOURS.
I sometimes tell her that it is as if she is punching me in the face with words.
We met it head on. I have my own quirks, went on to be quirky successful while still having vast social oddness. Getting the PhD meant that I met other smart adults with odd social quirks too. When she was 9 and miserable socially ( she just didn’t *get* other kids and had nothing in common with them), we bought a book called “The unwritten rules of friendship” and she and I worked the book – the the nerd chicks we are.
I mean, what else is a socially awkward bookish mom to do?
At 16, she is finding her group. She is verbally brilliant and tenacious. She works her ass off in school and gets B’s. We’ve fought to keep her in Honors History and English despite her specific learning disabilities…while fighting the teachers who look at test scores and assume that she doesn’t belong in their class.
We’ve been open with her about her diagnoses, mainly so she doesn’t feel shy about advocating for herself. Plus she knows that she has her Mama at her back if shit gets real.
I have NVLD. I was officially diagnosed at about the same age you were but nobody told us what it meant (it’s not in the DSM), so my parents thought it was just a version of “learning disabled” and if I tried hard I could overcome it. Well I tried really really hard and here I am weeks away from turning 30.
I had a meeting with my boss today and we talked about my penchant for blurting out the wrong thing without thinking (particularly when I’m stressed) and for spending too much time chatting with my coworkers (I’m desperate for them to like me). But also that I do really well sometimes and impress the right people and really know my stuff. It’s all I can do to hold it together and not tell her “look, I have a disability and I’m doing the best I can here!” but I know from experience that doing that will only make things worse for me (basically makes people hypercritical of my behavior and then say that it’s unacceptable)
So glad to read this here! I remember your comment on my “autistdar”, and it was good to read an elaboration of your experience. So much of it jibes with mine!
Solidarity, sister. My story is very similar to yours, except my mother communicated openly with me. I understood what was going on, and I’ll always be grateful for that. This label is *mine*, this diagnosis is mine, this life is mine.
Thank you so much for this post. I have never, ever heard of NVLD but your experience rang so true for me it brought me to tears. I remember so distinctly being in elementary school and weeping so violently over math homework (while having been a reader since before kindegarten). I talked so much my family bought me a shirt that said “I’m talking and I can’t shut up.” I became obsessed with every detail of various nerderies: Star Wars, Pokemon, Lord of the Rings, etc. I annoyed and overwhelmed people with my need to recite every minute detail about such things.
I have been, evidently, struggling with NVLD all my life. I have always been “clumsy,” to the point of losing my balance and simply falling over at the slightest provocation, being an extremely slow walker, and failing *so* miserably at basketball (which I loved dearly) as a youth. I still, as an adult, routinely walk into door frames and trip over things. I still feel “stiff” and awkward whenever I perform physical activity. I still need to explain everything about my feelings in terms of narrative and story. I knew all this about myself but never expected to see it connected to my socialization problems (which I chalked up to “just” good ol’ fashioned social anxiety disorder).
I’ve already written too much for a comment, but I’ll describe one of my experiences as an elementary schooler. At some point, I decided I would narrate my life, constantly, in my mind. I internally lived in the third person. It became a maddening fixation. I could only understand the world through third-person narrative constantly one or two steps behind what I was actually doing. Anything that required real-time attention became a struggle.
I always thought I just had a weird assortment of quirks. Reading this piece knit them all together into a whole–NVLD–that I can relate to so strongly. It is both scary and very comforting.
Thank you again so much for this.
Whoa, I did the narrating thing too, except in first person.
I’m neurotypical, though, //as far as I know//. Just some Really Annoying social (& other?) anxiety.
Thank you for this.
I don’t have NVLD but I likely have dyscalculia, and I relate to so much of this. One thing is for sure, it’s very comforting to find out that you have something to explain to people. It was also very infuriating, but putting a word to it made it real.
I have NVLD too. I can relate to so much of this, although I wasn’t diagnosed until 14. I didn’t know WHY I was struggling for so long because I was compensating for it by being really smart in other areas and they didn’t think to test me for a long while, but when they did, everything made sense. TV shows are also very important to me. I can talk for hours about Orphan Black or Buffy the Vampire Slayer (although I’ve learned that under most circumstances I shouldn’t.). I ended up going to a high school specifically for kids with Aspergers and NVLD, which was a wonderful experience and actually helped a lot with social stuff. It’s kinda tough to have this THING that’s not very well known, but it’s nice to have a reason for the way I work, and to know some ways to help myself, you know?
Thank you for this article – NVLD has cropped up on my personal “radar of things I need to know about”, and while there’s some literature out there, not enough is in that valued first person view.
It’s great to hear from someone my age. I’m 32 and was diagnosed with NVLD at 13. My parents sent me to various therapists and had me on meds, but none of my therapists or doctors even know what it is. Most would just treat and medicate me for ADHD which of course did nothing. At 32 I’m just kind of tired of having to work harder than everyone else. I’ve had a lot of problems with work and even been a fired a couple times. Always because of my mouth. I’m not sure if my symptoms are getting worse but I suddenly look around and realize I have no friends. I’ve bee trying to make some but can’t seem to connect to anyone. I completely agree with you about disclosing to others. Because no one knows what it is people think I’m just being dramatic. I don’t think it would do any good to tell my boss.
I’m in grad school and am currently taking a research class which means statistics. I’m sure you can imagine how that’s going. I’ve been fighting being different for as long as I can remember. Even though I knew my diagnosis, I always thought I was just dumb and screwed up and that’s the way it is. I’m just now trying accept the diagnosis (and myself).
I am wondering – without going into the long-winded reasons why (at least at this point) whether or not you’d be interested in having an Accountability Partner?
Somebody who, when you got around to doing the thing, the “I don’t wanna” thing you’ve been putting off – whatever it is, the housework, the expense report, the correspondence you need to move your life forward but you know is going to be a PITB, yadda – you tell that you’re going to do it, and then after you’ve done it, they celebrate uncritically with you?
And you do the same for them …?
Thank you for writing this. The more information there is out there about NVLD the better. Although it is a myth that NVLD is milder than Asperger's. It comes with degrees of severity, just like AS. I have a 40 point gap between my VIQ and my PIQ. Not remotely mild.
I’ve had this problem all my life, and at uni I made no friends, so I feel less alone after reading your article. At school I was bullied for being different and friendless. Thanks for bringing this out. I too love acting but was never chosen as I had no chemistry with the others, even though my acting skills were praised. I feel a lot of the time actors are chosen for charisma rather than for acting skills.
I’m always glad to see a new NVLD article – even moreso when it’s from a pretty nice intellectual venue like The Toast. I remember the battery of tests too, although I think I knew they were Special Education tests. But I had a lot of the same experiences, in regards to over-talking and whatnot. I think I tended to have more drive to be social but between my awkwardness and general lack of shame I tended to outcast myself, especially when I tried my hardest. It’s still a struggle. That said- I’m in school too and succeeding much better in my 20s and now 30s than I ever was as a kid.
I'm always glad to see a new NVLD article – even moreso when it's from a pretty nice intellectual venue like The Toast. I remember the battery of tests too, although I think I knew they were Special Education tests. But I had a lot of the same experiences, in regards to over-talking and whatnot. I think I tended to have more drive to be social but between my awkwardness and general lack of shame I tended to outcast myself, especially when I tried my hardest. It's still a struggle. That said- I'm in school too and succeeding much better in my 20s and now 30s than I ever was as a kid.