Looking at that list of autism symptoms…

“Hyperlexia is a syndrome that is characterized by a child’s precocious ability to read (far above what would be expected at their age), significant difficulty in understanding and using verbal language (or a profound nonverbal learning disability) and significant problems during social interactions.”

why the fuck was I not diagnosed until 19 that is literally- ugh

I will always be so goddamn bitter about how much easier things could have been if some authority just noticed me, didn’t just go, “well, she hasn’t spoken a word in two weeks and doesn’t seem to have friends, but she gets good grades and makes us look good, plus she never makes a fuss, so it’s probably all right”… I can’t change the past, but… ugh

For the longest time, I’ve been attributing my reading early to my birth complication, I couldn’t move because I was hooked up to a feeding machine and my baby brain had to learn something, so it started associating sounds with letters…

…hey, wait a minute, the post also says “gut problems”, my birth defect was gut related and I still have some problems that I assumed were related to-

god damn it why

What Williams Syndrome and autism have in common

Williams Syndrome is a developmental disorder that causes mental retardation combined with relatively intact language skills and a much higher-than-normal outgoingness and desire to socialize.  Given the language and social difficulties so many people with autism experience, the media and even some researchers have treated it as the inverse of autism.  But is this really true?

Not necessarily. We already know people with Williams Syndrome have some traits in common with those with autism, such as unusually sensitive hearing. But now it appears that the similarities extend to the social realm, according to a recent New York Times article.

If a person suffers the small genetic accident that creates Williams syndrome, he’ll live with not only some fairly conventional cognitive deficits, like trouble with space and numbers, but also a strange set of traits that researchers call the Williams social phenotype or, less formally, the “Williams personality”: a love of company and conversation combined, often awkwardly, with a poor understanding of social dynamics and a lack of social inhibition. The combination creates some memorable encounters. Oliver Sacks, the neurologist and author, once watched as a particularly charming 8-year-old Williams girl, who was visiting Sacks at his hotel, took a garrulous detour into a wedding ceremony. “I’m afraid she disrupted the flow of this wedding,” Sacks told me. “She also mistook the bride’s mother for the bride. That was an awkward moment. But it very much pleased the mother.”

People with Williams tend to lack not just social fear but also social savvy. Lost on them are many meanings, machinations, ideas and intentions that most of us infer from facial expression, body language, context and stock phrasings. If you’re talking with someone with Williams syndrome and look at your watch and say: “Oh, my, look at the time! Well it’s been awfully nice talking with you … ,” your conversational partner may well smile brightly, agree that “this is nice” and ask if you’ve ever gone to Disney World. Because of this — and because many of us feel uneasy with people with cognitive disorders, or for that matter with anyone profoundly unlike us — people with Williams can have trouble deepening relationships. This saddens and frustrates them. They know no strangers but can claim few friends.

Not only do children with Williams Syndrome have some similar social deficits to children with autism, but many are actually diagnosable as autistic.  In a recent study:

the socio-communicative skills of 29 children with Williams syndrome aged 2 (½) to 5 (½) years were examined using the Autism Diagnostic Observation Schedule (ADOS) Module 1. Most of the participants showed socio-communicative difficulties. Approximately half of the participants were classified by the ADOS algorithm as “autism spectrum.” Three participants were classified “autism.” Difficulties with pointing, gestures, giving, showing, and eye contact were present for more than half of the participants, with many also showing difficulties with initiation and response to joint attention and with integration of gaze with other behaviors.

In other words, however hyper-social people with Williams Syndrome may seem, Williams Syndrome is similar to, not the inverse of autism.  This only provides further evidence that people with social deficits do not necessarily lack the motivation to engage.  Yes, that includes people with autism.

Other off-topic, but interesting points from the articles:

1. Williams Syndrome appears to involve a lack of social fear.  The amygdala circuit that regulates fear and inhibition responses seem to work normally in all nerve-wracking situations except social ones. 

By contrast, people with autism report that eye contact is extremely unpleasant, even physically uncomfortable.  Something about their accounts reminds me of accounts I have read by people with social anxiety disorder and my own experiences with social anxiety in the past. If the desire for eye contact and outgoingness in Williams Syndrome comes from lack of social fear, does the discomfort with eye contact and awkwardness people with autism experience involve excess social fear?

This is not to say, of course, that autism and Williams Syndrome are opposites. Very different causes seem to lead to similar social difficulties.

2. As it turns out, the huge gap between verbal and spatial abilities in Williams Syndrome may provide clues to the reasons for the smaller gaps found in healthy people. The same New York Times article posits:

Work in lab animals has shown that at least one patterning gene choreographs the developmental balance between the brain’s dorsal areas (along the back and the top of the brain) and ventral areas (at the front and bottom). The dorsal areas play a strong role in vision and space and help us recognize other peoples’ intentions; ventral areas figure heavily in language, processing sounds, facial recognition, emotion, music enjoyment and social drive. In an embryo’s first weeks, Galaburda says, patterning genes normally moderate “a sort of turf war going on between these two areas,” with each trying to expand. The results help determine our relative strengths in these areas. We see them in our S.A.T. scores, for example: few of us score the same in math (which draws mostly on dorsal areas) as in language (ventral), and the discrepancy varies widely. The turf war is rarely a draw.

In Williams the imbalance is profound. The brains of people with Williams are on average 15 percent smaller than normal, and almost all this size reduction comes from underdeveloped dorsal regions. Ventral regions, meanwhile, are close to normal and in some areas — auditory processing, for example — are unusually rich in synaptic connections. The genetic deletion predisposes a person not just to weakness in some functions but also to relative (and possibly absolute) strengths in others. The Williams newborn thus arrives facing distinct challenges regarding space and other abstractions but primed to process emotion, sound and language.

The article’s association of spatial, but not verbal, ability with abstract thought is problematic, to say the least. (Consider syllogisms like “if a then b, if b then c, therefore if a then c.” These problems draw heavily on both abstract and verbal thinking).  But leaving this problem aside, this account does give me some hypotheses to test as I investigate individual differences between verbal and spatial ability in my own research.
Odd Girl Out

My grandma sent me this article in the mail, with an accompanying note: “I don’t usually rip things out of magazines at doctor’s offices but I just could not resist this on a girl with NLD. Thought you might appreciate it.” 

It is with gratitude to my wonderful, thoughtful, loving, doctor’s-office-magazine-ripping grandmother that I post the article here, in the hopes that some of you might also appreciate it. 

This week’s update! Sometimes I find it hard being an adult with an LD. A lot of the time people tend to think of learning disabilities as something that only affect children. But this is my brain and it isn’t changing.

On being too non-literal.


A lot of autism “experts” claim that autistic people are too literal. They start with real behavior–

  • many interpret language literally, and do not understand other people’s people’s sarcasm or metaphor. 
  • some do not engage in narrative or pretend play when very young; they line up objects instead.

–But then these “experts” claim that autistic people lack the ability to understand symbols (that one thing can stand for something else). An ability that they think makes people fully human. (Dehumanization alert).

Obviously, most of this is nonsense. Most autistic people can understand and use symbols, even if they do so unconventionally. And even if they could not, they would still be fully human. But I want to talk about the other, more subtle assumption: that symbolizing and being non-literal help you socialize.

Because my own experience suggests the opposite. You can be too nonliteral, and it can hurt you socially.

I was as nonliteral as you could get. I don’t remember ever playing with objects as they were. Everything stood for something else. That yellow block with visible wood grain in it? It was a piece of cornbread, not a building material. Even when a toy didn’t stand for something else it resembled, it was a prop in a story. One of the many objects I got obsessed with was a rose that decorated our table at a Chinese restaurant. I brought it home and watched it dry, tortured by the fact I was watching it die, and told a story about that. (It dried beautifully, by the way, and I kept it for years). 

Every game I played as a child was a story. I would act out stories with my Happy meal toys, my dinosaur figurines, my dolls, and my own body–filled with good fairies and wicked queens. When I drew, I drew scenes standing for stories, a panel per page comic-book style, telling the story out loud as I scribbled. When I played with other children, I wanted them to help me act out the stories I wanted to tell. They rarely wanted to do so, either because they wanted the story to go in a different direction or they just wanted to play. I would get angry. Adults told me I was “bossy.” I wasn’t bossy because I was a girl with leadership qualities, as a lot of people on Tumblr would assume. I was bossy because I wanted to direct my own drama, my peers wouldn’t cooperate, and I wasn’t willing to compromise. Needless to say, I wasn’t popular.

I was also too emotionally invested in my stories to relate to my classmates. When I was four and in preschool, I decided to pretend to be a mother hen and sit on some eggs from the toy kitchen. All was well until some classmates decided they wanted to cook some eggs. So they tried taking them from me (I can’t remember if they succeeded. Probably). I felt as if my own children were being taken from me and cried bitterly. Made such a scene that my teachers told my parents about it. They might even have sent me home; I don’t remember. I was too busy being upset about my “children” being taken from me and trying to get them back to notice this sort of detail.

I was obsessed with fairies, which to me, were a metaphor for the sense of wonder I often felt. I would watch snowflakes fall, gracefully and silently, and call them “snow fairies” because they seemed magical to me. I was four years old when a classmate told me, in a superior way, that “there was no such thing as fairies.” This child thought I was a fool for believing in them. He missed the point. Of course I knew that fairies were imaginary, just like I knew I wasn’t really a mother hen. I thought he was the fool, but I never found the words to explain why even to myself until recently. Here’s why: imagining things is a game. Of course you know it’s a game, but you spoil it if you say so. I knew that at some level when I was four. My peers didn’t. But to them (at the tender age of four), I was a naive fool who “still believed in fairies.”

Furthermore, even though I knew fairies weren’t real and I wasn’t really a mother hen, the associated emotions were just as real as the emotions triggered by real life. My peers and teachers wrongly thought I didn’t know the difference between fantasy and reality. That’s because they only saw two possibilities: being unmoved by fantasy, or not knowing the difference between fantasy and reality. They didn’t understand that you are supposed to have emotional investment in fantasy. Stories are vicarious experience. The point of role playing and consuming stories is to empathize, to understand what it’s like to be someone or something else. If you don’t feel, and feel deeply, you’re doing it wrong. The real problem was that I didn’t have the emotional maturity yet to react in a socially acceptable way. 

Being a girl, and a highly agreeable one at that, when I was angry or felt like things were unfair, I didn’t run or fight. I cried. I spent a lot of time crying under furniture. My teachers worried and tutted to my parents about how I would manage in kindergarten. They were charmed and confused at the same time. They admired my reading, writing and speaking ability, but knew I couldn’t fit in. They wanted to fix me, and told my parents I was socially immature.

You might listen to all this and think, “maybe she was nonliteral, maybe she understood language, but she didn’t understand her peers, so obviously she didn’t have theory of mind.” Not at all. True, I didn’t understand my peers, who liked different things, reacted differently to most situations, and had almost the opposite strengths and weaknesses from me. Furthermore, like most children, I didn’t realize I was different yet. But it wasn’t because I lacked a “theory of mind.” 

How do I know? One day when I was four, my father wrote down a conversation we had that day. (I know it happened and how old I was at the time because he included the date). He was pretending to be a silly character who hid his head and said, “If I can’t see you, you can’t see me.” (He often played logic games with me because they made me laugh, and I loved explaining to a grownup why he was being silly). In response, I hid my head and asked, “Can you see me?” He replied, “yes.” I said, just as he could see me–even though I couldn’t see him and thought he couldn’t see me–I could see him–even though he couldn’t see me and thought I couldn’t see him. “That’s a proof,” I said. Not the Sally and Anne task exactly, but lots of complicated syntax, predicting his perspective, and comparing it to my own. Probably more complicated in terms of language, logic, and perspective taking than most theory of mind tasks, to be honest, and I did it spontaneously. Surprised the hell out of my dad. My father, by the way, was impressed because I understood the concept of a proof and came up with my own–not because of the advanced language and theory of mind involved.

Fast forward seven years. I was eleven and in school for the first time. I was at a private school for gifted children. I had no friends. I wasn’t quite at the bottom, but there were only two or three children below me. I was an outcast at a school for misfits. When I finally did make friends there, it was with the other outcasts. Since, I have been isolated and rejected by most people I’ve met. I’ve made a few close friends along the way. All of them have been different in some way. Most have long thought of themselves as “weird.” Many were also outcasts. 

My nonliteral way of thinking is still holding me back as an adult. My speech is peppered with metaphors and analogies. When was the last time you heard those at a casual conversation at a bar or a work event?  I can talk to you for hours about your life story, the meaning of life, or arcane scientific topics. But I struggle to talk about real-world things, like sports, the weather, or places my conversational partner and I have been. I have trouble even learning about these things in the first place. 

I can’t talk about movies right because–if I manage to overcome my audio and visual processing problems enough to understand what’s going on–I get sucked into the story. I don’t notice special effects or celebrity cameos. I even recognize celebrities backwards (when I do so at all). For example, I think of Sarah Michelle Gellar and her associated roles as Buffy, not vice versa. Think about how many conversations revolve around movies and actors, and you’ll understand why I have trouble participating in conversations with most people.

It’s not that I think my topics are more valuable just because they’re more abstract and some people say they’re “deeper.” I think real-world topics are valuable, if only because they interest other people. But I just can’t think and speak about them the way most people do. Between my non-literal thinking and my disabilities, my brain just doesn’t work that way.

So, to autism “experts,” I’d like to make a counterproposal.

Like emotional empathy and just about every other human trait, non-literalness is only good in moderation. More isn’t better. Too much can make you a social outcast, just as too little can.

TL;DR: Autism “experts” say that being non-literal is good and makes you socially successful. But too much can make you a social outcast. 

[I’m tagging @withasmoothroundstone in this because she is often on the literal extreme and I want to know what she thinks].

As a kid with an LD because I got bad grades I was sure that meant I was stupid. But I remember looking at my friends and feeling that they didn’t seem way smarter than me even when they got way better grades. School just wasn’t built for my brain yet and grades don’t actually show how smart a person is.

When I was in school I would sometimes feel like teachers only saw the one hour of work I did inside the classroom and forget the hours of work I did outside of it. Learning isn’t about being perfect, it’s about making progress.

This week’s update! I know my LD, I’ve lived with it all my life, I understand what is easy for me and what is hard. When I get told I’m not trying hard enough or its my attitude holding me back, it just hurts.

This is something I’ve really struggled with in the past and still do. I’m very lucky to have a really good support network but it’s still hard sometimes and lonely. There are times I find things overwhelming and it would be nice to talk to someone who has the same experience. I think that’s the cool and important thing about the online community is that you can find people who are like you. It just feels so good to be part of a community sometimes. I think that’s one of the reasons I started this webcomic.