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[ameliabaggs]

Embarrassing admission:  I’m a savant.  Stick with me and I’ll explain, but it’ll take awhile.

Understand that I’m not saying this to brag.  This is not easy for me to admit to myself, let alone anybody else.  It’s taken me over a year to write this.It’s actually as difficult for me to discuss this as it is for me to discuss the fact that I actually have coprolalic vocal tics.  In fact autistic people’s discussions of savant skills often resemble Touretters’ discussion of coprolalia:  There’s a tendency to try to make out like they’re much rarer than they are.  

About 10% of Touretters are thought to have coprolalia, that is vocal tics that sometimes involve involve swearing or other offensive words (like slurs).  It’s embarrassing to Touretters as a whole because to a lot of people Tourette’s is like a punchline to a joke about cussing.  Similarly, about 10% of autistic people are thought to have savant skills (I suspect the number is higher), and autistic people are just as embarrassed by the fact that savant skills have become a stereotype.  10% is one in ten people. That’s not actually the tiny minority that people would have you think it is.  And I do believe savant skills are under-reported for reasons I’ll get into later.

Some background about myself

I was first recognized as being autistic at the age of fourteen.  I was in a mental institution following a suicide attempt, at the psychiatrist I got was randomly assigned.  In other words, he had no reason to be specifically looking for or expecting autism when I first became his patient.  I would remain his patient until his retirement and subsequent death in my twenties.

Anyway, after he met me, he asked to meet with my parents.  My mother describes him interviewing her extensively about my early development, asking pointed questions about certain things.  She said he very quickly said of me, “Your daughter sounds like an idiot savant.”

A note on terminology

Idiot savant sounds outdated or downright rude, depending on your take on things.  Even in 1995 when this was taking place.  To understand what he was saying, you have to understand the history of terminology around savant skills as well as his own personal history.

So first off -- my doctor was old.  He was trained and did his residency at a time when Southern mental institutions were still fully and officially segregated by race.  His age and specialty in child psychiatry meant that he had met a lot of children over the years, including a lot of autistic children.  It also meant that he used a lot of terminology that would at best be considered quite old-fashioned today, because he learned his clinical vocabulary in probably the early sixties.

Idiot savant does not mean a specific type of savant.  It has nothing to do with the outdated classification of idiot which usually meant what today would be referred to as a severe and/or profound intellectual disability.  There was never an IQ cutoff for being an idiot savant.  Idiot savant meant “wise idiot” and was meant to cover the unevenness of cognitive skills that was characteristic of cognitively disabled people with savant skills.

So him saying I was an “idiot savant” would be the same way that someone today would say “Your daughter has savant syndrome.”  He was not making a judgement about my IQ, which at the time had only tested as high, at the age of five, largely due to the effects of hyperlexia, a learning disability involving early reading ability usually combined with comprehension issues, that is in some contexts itself considered a form of savant skill.

People talked about idiot savants, and then it became autistic savants (except that this term would only be applied to autistic people, who are not the only people with savant skills), and these days it’s savant syndrome. You don’t need a cognitive impairment of any kind (such as autism or intellectual disability) to be a savant:  There are a lot of blind savants, for instance.  Today people mostly just say savant or savant syndrome.  

But definitely understand that idiot savant was its own term, separate from both low IQ/intellectual disability in general and the classification of idiot in particular. In fact, very few people identified as savants throughout history, including when the term idiot savant existed, have ever fallen into the official classification of idiot or any of the terms that replaced it.  

The confusion people have about the technical term idiot savant (mistakenly relating it to idiot in particular or intellectual disability in general) is very similar to the confusion over the term psychomotor retardation.  Psychomotor retardation refers to a mental and physical slowing associated with certain medication side effects as well as a number of conditions such as depression.  It has absolutely nothing to do with the category called mental retardation, a recent but now outdated term for intellectual disability.  They both have the word retardation in them because it means slow, but they refer to entirely different types of (purported) slowness.

Back to my own history

So he called me an idiot savant before he even used the word autistic to describe me.  Both words came up in the first few sentences of that conversation, but idiot savant was the term that came up first.  Savant skills were the first unusual thing he recognized in me.  Within a month, after further interviews, conversations, interaction, observation, and formal testing, as well as consultation with a team of psychiatric and neurologic professionals, he diagnosed me with autism.  Within the description of my diagnosis, he mentioned idiot savant qualities.

The actual autism diagnosis happened in a way that was extremely common in the nineties.  He knew that I met the full criteria for autism.  He told my mother I was simply autistic.  But in the nineties, saying someone was autistic was equivalent to saying “This person will never improve, all therapy is wasted, don’t spend any more money on them than it takes to permanently institutionalize them.”  He knew it would be terrible if the insurance company took this take on me -- which they were already trying to do without that encouragement.  So on paper, he alternated between saying I had a complex and diagnostically confusing developmental disability, and saying I specifically had PDDNOS or atypical autism.  Using PDDNOS/atypical autism as a substitute for a flat-out autism diagnosis was extremely common in the 1990s and had nothing to do with whether you actually met full criteria for autism.  

My diagnosis was changed to autistic disorder later on by the same doctor, after the danger had passed and an autism expert had suggested making the change but suggested I go back to the psychiatrist who knew me the best to confirm that this was an accurate thing to do, since the expert in question did not know my family or have years of observation and testing to go on, whereas my psychiatrist did.  This was after a bunch of misdiagnoses that would take way too long to explain but that were also quite common in the nineties, in fact some of them were among the most common psychiatric misdiagnoses of autistic people.

The savant thing

So... at the time of my autism diagnosis, autism was an abstraction, and a word I did not understand how it applied to my life.  Words like ‘underlying developmental disability’ and ‘pervasive developmental disorder’ and really anything with ‘developmental’ in it might as well have been gibberish.  Even when I heard these things over and over, most of the time I ignored them.  I’d occasionally read a book by Donna Williams or Temple Grandin, identify to one degree or another, but not grasp what autism was any better for having read these things.  And most of the time, while others in my life apparently thought about this diagnosis a good deal, I didn’t.  The savant stuff was way under my radar most of the time as well.

I was an adult before I understood why I was diagnosed with autism.  I was also an adult before I really saw that I’d been labeled as having savant skills or savant qualities, and before my mother told me the story of my initial diagnosis. And to be honest, I mostly ran away from the label, inside my head, and neither said much about it nor thought about it any more than I had to.

Like many autistic people, I was conscious that the popularity of Rain Man had caused people to view autism as inevitably involving savant skills.  Being a savant had become a stereotype.  And Rain Man was an unusually talented savant.  Most savants have neither his degree of savant skills nor his sheer number of savant skills.  He was based on a small number of real people, most notably Kim Peek, who had agenesis of the corpus calosum and a huge number of highly impressive savant skills.

Like many other autistic people, I was very critical of the concept of savant skills.  I thought it was just a way of passing off talents as somehow unexpected or pathological or both, when they happened in disabled people.  I thought it was just a shorthand for giftedness, a concept I have a great deal of trouble accepting as real or useful, at least not as it’s currently defined.  And in many cases it has been used in these ways and autistic people are correct to be suspicious and critical.

And honestly I was afraid of it.  For reasons I still can’t articulate, it really terrified me to face the idea that I might be a savant for real.  But as I discovered, I am.

What kinds of savant are there?

One of the things that had me confused about savant skills was that, like many  people, when I think of savant skills, I think of the most extreme skills.  Those are also the rarest kind of savant skills.  Prodigious savants, as such people are called, are uncommon.  They have never been the most common kind of savant at any stage in the development of the idea of savants in general.

So here are the modern, official classifications of savant.  Remember here that I don’t make up the words for each kind of savant skills and may not  like  them.

Splinter skills are the least spectacular kind of savant skill.  They represent talents that are highly impressive specifically when compared with the cognitive difficulties the person has in other areas.  They are very common among savants.

Talented savants are savants with talents that are likewise in contrast the person’s difficulties, but they would very obviously be things the person would be considered talented for regardless of disability or lack thereof. They are also pretty common among savants.

Prodigious savants are the rarest kinds of savants.  They are people who have skills that would be considered not only highly talented but well beyond the range most people even consider humanly possible for someone to have a skill in.  Like the way Stephen Wiltshire can fly over a city once and then do a detailed and almost entirely accurate sketch of he entire panoramic view from memory.

Knowing these categories, I can see that I have a lot of splinter skills and sometimes veer into the realm of talented savant.  This is a much better representation of my areas of talent than te concept of giftedness in general is, because the the term savant refers to a talent in a relatively narrow area surrounded by areas of great difficulty.  That contrast has been a fact of life for me forever.  Like back when my hyperlexia gained me a high IQ at a time when I literally didn’t know what the word test meant.

Hyperlexia is something that’s sometimes considered a savant skill and sometimes not.  In my case, I feel like it is, because it’s an extreme and isolated talent that came seemingly out of nowhere and that is accompanied by extreme cognitive difficulties in areas that most people would assume to be related to the areas of talent.

I also had musical savant skills.  Perfect pitch is another thing that’s considered a savant skill some of the time and not others.  But the fact that I was first chair, first violin in the junior high orchestra by the age of seven, I can’t read that as anything other than an obvious foray into the realm of talented savant.

Up until I was in my early twenties, I had a spatial (not visual -- closer to kinesthetic, or the way blind people map space) map in my head of every place I had ever been, indoors or outdoors.  I never got lost.  Ever.  I don’t know why I lost this but while I had it, I can’t see it as anything but a savant skill.  My mother, who has severe spatial awareness problems (she’s very visual -- she and I are opposite kinds of proof that visual and spatial are not the same skill), has used me as a navigator since I was a small child,

I also have something that I feel like must be extremely common and not usually recognized at all.  I would call it a partial savant skill.  It’s a skill that isn’t quite a skill because it has no outlet.  I am constantly composing detailed, complex, original cello music without even trying.  But with no way to play it in realtime, and no way to write it down (translating to musical notes is a laborious, slow process for me), the music remains in my head and never shared with the world.  So I don’t know that this counts as a “real”savant skill by objective measures, but it feels like a savant skill with a  crucial piece missing.  I wonder how many people have partial and/or unexpressed savant skills like this.

I think my art (specifically, painting in recent years) falls somewhere in the category of either splinter skill or talented savant skill.  Which may always be a subjective thing, and it’s difficult to judge the quality of your own work.  But this has less to do with some objective measure of quality, and more to do with the way in which the art takes place and the way the skill developed and functions.  Savant skills are more than just the presence of an unexpected skill, there’s specific ways they are learned and function in a person that mark them out as different from your average talent of the same level.

And people do hide their savant skills sometimes, even when they are obvious savant skills.  I am not open about all of my savant skills.  Additionally, not all savant skills are in areas where people normally look for savant skills.  The current savant experts focus almost entirely on certain areas for savant skills, to the exclusion of other skill areas.  

Additionally, many disabled people develop skills that are entirely unknown to nondisabled people and therefore unmeasured and not accounted for in descriptions of possible savant skills.  It is entirely possible, in fact probably common, for people to have savant skills in these unmeasured skill areas.  I am no exception to this.   I have savant skills I can’t even describe because nobody has ever acknowledged the existence of the skills in question never mind come up with language for them.

Anyway, I eventually realized it was important that I face the fact that I have savant skills.  It’s more than a little embarrassing.  It’s not something I wanted to admit to myself.  I’ve spent over a year agonizing about how to articulate what I’d found out about myself.  As well as whether to tell anyone about it at all.

I know a lot of people don’t believe savant skills are a thing.  I have read several books on the topic and concluded that they are a thing.  And that they apply to my life.  I’m not capable of explaining all the details.  And calling something a savant skill is and should be very different than just a way of saying that someone disabled has a talent or qualifies for some definitions of giftedness.  (In fact, I don’t believe in any common concept of giftedness that I’ve ever heard of.  I do, however, now believe in savant skills.  They’re entirely different ideas.)

Anyway, I can’t explain why this was so hard to believe, herd to face up to, and hard to admit.  But it was.  I still can’t escape the fact that I have savant skills, and I’m better off not trying to escape or deny it any longer.  I have to admit that the doctor who first categorized me as autistic was right about the savant thing as well.  As I said, i’m not bragging.  I’m simply publicly admitting that my combination of skills and difficulties -- both current and past, since some skills have vanished and others have appeared over time -- fits the savant pattern perfectly, both in areas that are usually widely recognized as common savant skills and in areas they would never even notice.

[ameliabaggs]

(via “猫用ポケット”付きパーカー、「膝に乗ってきて動けない」を解決。 | Narinari.com)

[ameliabaggs]

This is a scarf I made for a case manager who's leaving. Entirely my own design, designed to mimic moss, lichen, and fungus in the redwoods. Our first conversation involved a lot of talking about the redwoods, since the biggest item on her bucket list had been to see them, so she took a long trip through the California redwoods. And I think she can pull off wearing a long, thin scarf much better than I can. It's a mix of this weird multicolored mossy-looking crimpy wavy yarn, and yarn that's more like a ribbon than yarn and usually used to make obnoxious looking ruffle scarves which are even less exciting to make than to look at. But I found a different use for that second yarn and I think I'll use it this way from now on, because people send me a lot of it and I'll be damned if I'm gonna make twenty ruffle scarves in a row.

[ameliabaggs]

Annie headcanon, and SJCMT ramblings.

I recently watched the version of Annie I was obsessed with in childhood. Only this time... My headcanon started taking over really fast and replacing what was actually on the screen. So here's what happened, if only in my head: * Annie had severe complex-PTSD from a lifetime in a terrible orphanage.  * Annie could never get used to life at the Warbucks mansion. She couldn't just fail to work, suddenly, after working every day of her life. She felt empty when everyone tried to do everything for her. She felt lonely for the other orphans, even Pepper. The whole song "i think I'm gonna like it here" never happened.  * Annie manipulated the people at the mansion into adopting her as a way out of the orphanage. Since she was considered young and innocent, nobody noticed the money she kept stealing and buying things or making contributions for people in need, which is the only reason she can see to be a billionaire in the first place.  * Annie has to keep from gagging when she realizes that Warbucks became super-rich as a reaction to childhood poverty, but then opposed programs like the New Deal that would help poor people who weren't so lucky, get back on their feet. And doesn't, himself, use any of his money to actually help poor people who didn't manage to pull themselves up by their bootstraps. * Despite being disgusted by Warbucks on so many levels, Annie continues to play the cute lovable adoptable orphan role around him, so he won't suspect she has any plans for his money. (Helped along by the era's sexism, it's assumed a little girl couldn't conceive of such plans.) * One of her first acts with the money she now has access to, is to find homes for any orphan at the orphanage who wants one (everyone, but she asks first because orphans never get asked anything about their wishes in these matters), pay off Miss Hannigan enough for her to not have to work for quite some time, and shut down the orphanage due to conveniently failed inspections.  * She does all this with small enough sums of money that nobody notices them missing compared to the billions of dollars Warbucks has.  * She has been without parental figures too long to form that kind of bond with anyone, at least not easily. But she already knows the value in pretending she does. Her actual bonds and loyalties lie with the other orphans, and she spends the rest of her life trying to make sure nobody would go through what she did.   * She takes care, growing up, to never let an adult notice she doesn't emotionally need parents the way other people do, because even in the thirties there were plenty of rumors of adopted orphans (especially older children) "gone bad" because they didn't form the "right" kind of emotional ties to their adoptive parents. She knows she can love, but nobody else would know, if they realized the truth.  * Once she grows up and her adoptive father has died, leaving all his money to her, she and her partner (another woman, who also grew up in an orphanage) choose to adopt older children, specifically, some of them older disabled children and others who don't usually get adopted easily. * She continues using the money to actually help people, but now she doesn't have to hide those activities quite so much.   * And after seeing the latest Annie, I will always headcanon Annie as a girl of color.   BTW I was in a production of Annie as a child. Not with a speaking part, because neither my singing voice nor my acting were ever as good as my family led me to believe. ;-)  I was one of the huge cast of random orphans (everyone who tried out got a part, orphans were where they put anyone who didn't get put elsewhere).  My mom says she got a lot of dirty looks walking me to rehearsals, because we were clearly mother and daughter but I was wearing ill-fitting dirty patchwork rags and my mom was dressed in clean and neat well-fitting clothes.  I had fun, but I also got head lice. All the orphans without speaking parts shared a smallish dressing room. You can imagine how happy lice were in that environment.  BTW, if you're a parent in the San Jose area and you want to get your kids involved in musical theater, I think CMTSJ {http://www.cmtsj.org} is the same group I acted with. I was only in a couple shows but they were always both hard work and a lot of fun. Back then it was SJCMT (San Jose Children's Musical Theater), not CMTSJ (Children's Musical Theater San Jose).  I don't know what prompted the name change. They still have casting everyone who auditions as one of their core principles.  But I have to wonder what happens when a kid known to be disabled auditions. I wasn't diagnosed back then -- people saw me as highly unusual, often in a bad way, but I didn't have the stigma of an autism diagnosis, I could walk without assistive tech, and while my speech was often non-communicative echolalia, it took a trained professional or someone else using the same language tricks to hide their own lack of comprehension, to notice that. And echolalia was perfect for memorizing lines and songs in the inflection I'd heard them in.   Autistic catatonia was starting to set in during my last play with them, but all that meant was I got cast as a tree because (according to my mom at the time, who had no way of knowing this was neurological: I hadn't started freezing yet) I stood absolutely stock still during my auditions. I liked playing a tree though -- in my eyes it was the best role in the show.  You could only see my face and hands, like Holly on Red Dwarf (my favorite TV show at the time -- Holly was the computer, and you could see its face only usually, but in a dream sequence its hands showed). I was always on stage so unlike anyone else but the couple other trees, I could watch the entire show from a platform at the back of the stage. And I got to grab and shake anyone who got near me.  But anyway -- I have no idea how they handle casting children with known-to-them disabilities. And I don't want to get anyone's hopes up that their principle of casting everyone applies to known disabled kids, because so often we are the exception to organizations upholding principles like that. And I know from talking to other disabled people, that often directors are singularly unimaginative when it comes to incorporating disabled people into their shows. Even when the disabled actor lays it out for them and says "Here's an easy way to include someone with my disability regardless of which role I end up getting." Still it's worth a shot if your kids (disabled or otherwise) like musicals and acting and live in or near San Jose.  Also I should say one other thing about disability and SJCMT. During one of our performances of that show where I was a tree, a group of inmates from the local state developmental disability institution came to watch. It was one of a number of moments of recognition of "That person moves and/or sounds like me, and they grew up to live in an institution.... HALP???!!!!??!!" that happened to me starting right around that time period and left me scared shitless about my future.  And judging from what that future held for awhile, I had every right to be scared out of my mind. 

[ameliabaggs]

My first dreams.

I used to have what I’d later call ‘white nights’.  They are the earliest dreams I remember, beginning in infancy and recurring throughout early childhood.  All I saw was white, all night long, as time passed.

Soon, I began to have what I learned to call ‘nightmares’.  These were dreams where everything was pretty ordinary.  Then I would be looking at an object, any random object, and a sound would begin.  I later learned it was the sleep-amplified sound of the blood rushing through my ears as the muscles near the inside (the ones you use to click your ears) clenched in terror.  After that, it was like if there’s a fear center in the brain, mine was turned up to eleven.

I later learned that for most people, a nightmare is a dream like the kind I had due to PTSD -- bad things happen in the dream that make it unpleasant and scary.  What I experienced in those other dreams was more akin to night terrors.  (Which you aren’t supposed to remember, but apparently a lot of people do remember the dreams they were having at the time, and the sudden inexplicable terror is a big part of it.)

I called some of my nightmares “bird coming out of my stomach dreams” and other nightmares “airplane coming out of the floor dreams”, but I don’t know where i got those names for them.  Just another example of ‘idiosyncratic language’ I guess.  :-P

Irrelevant side-note:  Wow and just for my own information I looked up idiosyncratic/metaphorical language and it’s been there in every DSM that had autism starting in 1980:  DSM-III criterion D (”If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal.”), DSM-III-R criterion B5 ("Marked abnormalities in the form or content of speech, including stereotyped and repetitive use of speech (for example, immediate echolalia or mechanical repetition of a television commercial); use of "you" when "I" is meant (for example, using "You want cookie?" to mean "I want a cookie"); idiosyncratic use of words or phrases (for example, "Go on green riding" to mean "I want to go on the swing"); or frequent irrelevant remarks (for example, starts talking about train schedules during a conversation about ports);”) , DSM-IV and DSM-IV-TR criterion B3 (”stereotyped and repetitive use of language or idiosyncratic language”), DSM-V criterion B1 (”Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).”).  That’s pretty consistent for a condition where the criteria have been changing, at times drastically, with every new DSM.

One of these days I need to write up how I fit, and didn’t fit, different DSM and ICD criteria for autism (as well as atypical autism and PDD-NOS where relevant), just to show how it’s changed over the years, and how subjective the diagnosis has always been.

But for now I’ll hope that I sleep at all, whether it’s a white night (rare these days), night terrors (also rare these days), nightmares (somewhat common these days, but less common than they’ve been), boring dreams (sometimes a relief), or interesting dreams (my favorite are when I get to explore endless buildings on my own -- I can’t design buildings when I’m awake, but in my dreams I design elaborate amazing architecture that I wish I had the drawing skills to turn into blueprints... must’ve inherited an unconscious talent for architecture from my mother, who always wanted to be an architect but was discouraged from it for being female... I used to draw houses with her as a kid and hers were beautiful, precise, blueprint-looking things).

To give an example of one of the night terrors that I thought was an ordinary nightmare:  A phone sits on a table in a room that is otherwise pitch black.  The phone rings.  Someone says “Operator?  Operator?”  Then as I look at the telephone, the sound starts, and I scream and scream and scream until I wake up.  There’s nothing to be afraid of in the dream, yet the terror is worse and more all-consuming than in dreams where, say, I’m being chased by someone who is trying to kill me and no matter where I go they always find me.  Which is a more conventional nightmare.  But not anywhere near as scary.  (Exhausting, though.  And scary in its own right.  As far as I know, my brain developed that kind of dream to wake me up when I quit breathing.)

[ameliabaggs]

“The squeaky wheel gets the grease.”

I had some neighbors down the street who adopted a boy who, if I recall correctly, had severe ADHD and multiple learning disabilities. We went to different branches of the same special ed school. They were very disrespectful to him. They talked about him like he couldn’t hear and after years of this he accepted it as just the way things were. I’d tell them it was rude, but the father would say, “He doesn’t care, he didn’t even notice what s are saying. Hey Jason, is it okay if we talk about you?” Jason uttered an obviously distracted and rote-learned “yes,” and I kept myself from hitting the father by reminding myself of our relative size difference.

 The dad was whiny. Like you could hear the whine tone in his voice better than you could in most toddlers. It came out in the weirdest points of conversations:

"Why can’t it be that schizophrenics ever hear soft, soothing feminine voices?  When they’re on TV they are always masculine and menacing.  I wish that people could hear comforting soft feminine voices."

[Jason was five at the time of this next one for reference.] "Jason has this huge herniated belly button. And he plays with it all the time. In ten years he might start dating girls. What is he going to say to explain to a girl that he plays with his belly button?" {1}

Out of curiosity, I asked these long-time neighbors why it took so long to get an autism diagnose for me (I was 14 but had experienced unmistakable traits since babyhood and been seen by professionals nonstop starting at the age of seven, with suggestions that I see professionals going back way before that.) 

In this day and age I’d have been diagnosed by the age of two if not sooner. My mother believes so too. And if I’d been seen by a specialist in say, 1982, who really knew their stuff, I’d still have been diagnosed with either infantile autism (see DSM-III) or childhood onset pervasive developmental disorder (also see DSM-III). Easily. 

It all depended on how strictly they would’ve applied criterion B in infantile autism (“Pervasive lack of responsiveness to other people (autism)”).  Since it’s now been shown that pretty much no autistic person meets that criterion (we can and do respond to others, just not in typical ways), it would’ve been up to how observant the doctor was, which category to put me into.  but it’d have definitely been one or the other, and by the time the DSM-III-R came out I would have, just as under the DSM-IV, qualified easily for an autistic disorder diagnosis.

But those definitions came out in the year I was born, and take time to propagate.  I did not see a specialist, just a family doctor who I ran away from as soon as he entered the room due to his loud booming voice. My mom said one moment I sat calmly on the end of the exam table, he’d walk in, and I’d be backed up into a corner studying the LEDs for the intercom system way too intently.

I remember those colored lights and wishing I could take them home. I remember the doctor’s booming voice. I remember being up against the corner trying to disappear into the wall  I was good at disappearing into objects).  But I never connected three events. To this day I have trouble instinctively connecting cause and effect, at that age it would be impossible.

Anyway my neighbor said something interesting. And probably accurate.  This is a paraphrase:

Everyone on this street knew you were different. But you were such a quiet child, you rarely talked to people. And you know by now it’s the squeaky wheel gets the grease. We all knew there was something different about you, but it wasn’t our place to tell your parents how to bring you up.  So it wasn’t until your communications and behavior got worse that people  started trying to diagnose you instead of just sending you to MFCCs{2} and the like.

I’m still baffled by the squeaky wheel thing.  I wasn’t that quiet.

[Footnotes below cut.]

FOOTNOTES 

{1}  The kid was five years old. Give him a break. First of all I bet the father picked his nose or sucked his thumb when he was five. And now he was happily married, whining notwithstanding.  I remember being worried myself, though. I used to deliberately pee in my room to mark my territory. I blamed the cat if asked. But I used to think I’d have to explain it to my future husband. Because I thought getting married to a man was inevitable.

  Fortunately for me I did outgrow this, and also figured out I’d never marry a man. (Women, nonbinary people, and genderless people are another story but I still don’t see dating in my future.) And anyone who cared enough to want to marry would find a way to deal with it. 

I know an autistic woman and her daughter born with a mild and severe version, respectively, of the same autism-linked genetic syndrome, who still do something similar. I think the mother’s in her thirties, the daughter’s an older teen. They pee into a bowl and sprinkle it around the house to preserve their smell in that area, to mark it as theirs in a way a piece of paper just won’t cut it. I think that’s amazing and beautiful because I’ve recognized people by the smell of where they’d been sitting, since early childhood. That they’ve made it work for them as adults, and as a single mother at that, makes me feel vindicated and a little envious.  I could never get away with that now. But I do get antsy when people use my toilet or shower, because the pee, poop, and sweat doesn’t correspond to my own famliar scents or my cats

{2} Marriage, Family, and Child Counselor. I never understood why I saw her or what I was doing there. We played board games about feelings and I learned to make up answers since I had trouble with the meaning of feeling words. All of us were there because we were bullied which made me later wonder whether the bullies had to go to therapy — probably not.

[ameliabaggs]

In your own world, and being way too literal about it.

I was wandering around a university as night, age 14, not attending, just staying for spring break.

And I saw a building marked “Institute for Third World Studies.”

I thought, “Wouldn’t it make more sense to call it geology, our earth studies, or something?”

Because third world to me meant third planet.

Another one closer to home with autism.

"In their own worlds."

I was being evaluated for autism and didn’t know it.

Thought in your own world meant your body was on earth but your senses told you you were on Mars or Jupiter.

In library saw Nobody Nowhere in the shelves. How can someone write on Earth if their brain was feeding them pictures of Jupiter.

I opened the book and freaked out because I felt like the book was telling my secrets and the author didn’t even know me.

This all amuses me because it was me taking literally a phrase used constantly about autistic people. Because I was autistic and didn’t know it yet. Ties my brain in knots just thinking about it.

[ameliabaggs]

Trekkie, Trekker, Trekkist (with a side order of Geek, Nerd, Dork, and Dweeb) -- splitting linguistic hairs

I read it in an issue of The Best of Trek. They came in book form in Saratoga Public Library, where I marked them as ‘my territory’ with my own blood.  I had no idea that this was gross or unsanitary or even dangerous, I just did it.  I had a thing for marking my territory with bodily fluids, most notably urine and blood.  It was like the equivalent of a graffiti artist saying “I was here.”  I felt like I was leaving a mark on the world that would never come off, and sure enough, roughly 15-20 years later the marks were still there.

Anyway, they gave three definitions, or something like:

Trekkie: An overly fanatical fan.  The sort of person who approached Mark Lenard and asked him what the weather was like on Vulcan.

Trekker: Someone who made actual contributions to the show, behind the scenes or otherwise, or ran Star Trek conventions, printed magazines or fanzines, written book tie-ins, etc.  May or may not be fanatical, but tends to be more “serious” than a Trekkie.  By this definition, Diane Duane is a Trekker (but started off more like a Trekkie or Trekkist).

Trekkist:  A fan who is neither a Trekkie nor a Trekker.   Not making major contributions to the show or the cons, but also not being completely fanatical about the show.

I decided that I was a Trekkist.  I decided that anyone who asked if was a Trekkie, would get a long lecture about how I was a Trekkist, not a Trekkie or Trekker.

These days, I’d say that back then I was somewhere midway between Trekkist and Trekkie, with strong leanings towards Trekkist.  These days, however, I would say I am currently none of the above — I sort of like the show, especially the old series, and I’ve still got a replica tricorder kicking around the house somewhere, and my old Spock ears that are so brittle they’re falling apart.  But these are mostly memories of an old special interest, Star Trek is simply not a special interest, or even much of a regular interest, anymore

Anyway, one of the social skills my mother at one point desperately wanted me to learn (and for good reason, it really is rude) was pedantically correcting people like that.  It’s sort of like… only Trekkies would have arguments about the difference between Trekkie, Trekker, and Trekkist.  Most non-Trekkies have never heard of a Trekker, and even most Trekkies and Trekkers have never even heard of a Trekkist.  You’ll just end up offending someone by making them feel ignorant at best and left out of something, ostracized, at worst.

It reminds me also of the nerd vs. geek vs. dork debate. Only someone who is one of the above would even have the debate.  And for the record, I’m a dork first, a nerd second, a geek third.  Here’s an example I found on the web of three definitions, though definitions may vary:

Geek (n.)- Someone who spends a lot of time and energy in a certain area, not necessarily computers or technology; An outwardly normal person who has taken the time to learn technical skills. They are generally not athletic and enjoy video games, comic books, being on the internet, etc. Nerd (n.)- A socially awkward person who has learned technical skills due to the spare time they enjoy from being generally neglected; one whose IQ exceeds his weight. Dork (n.)- Someone who has odd interests and is often silly at times. A dork is also someone who can be themselves and not care what anyone thinks. Dorks are typically more noted for their quirky personality.

In short: Geek- Smart but not awkward Nerd- Smart and awkward Dork- Smart in less useful areas, awkward but proud regardless

(found on this blog page)

There’s also this compilation of definitions from around the web of nerd, geek, dork, and dweeb:

Geek:  Someone who spends a lot of time and energy in a certain special but conventional area, like computer programming or trouble-shooting, but not necessarily computers or technology. You can apparently have chess geeks, guitar geeks, or cooking geeks. A geek is an outwardly normal person who can relate to others in general but who has taken the time to learn specific technical skills and would rather talk about their special obsession than anything else. They are generally not athletic and enjoy sedentary pursuits like video games, comic books, being on the internet, etc. They usually dress to suit their special interest, which can be flamboyant, such as wearing a tee-shirt describing their special obsession or a hat bearing a logo of their special pursuit. Geeks can be self-confident and proud of their traits.

Nerd:  Someone with a great interest in academic subjects like math and science and who is socially awkward and has trouble relating to others outside of their fields of academia. Their IQ often exceeds their weight. Science fiction such as The Matrix and Star Wars or LOTR are often their cup of tea, as are hobbies like astronomy or chemistry sets. Nerds usually dress conservatively and are more interested in the mind than their outward appearance, although as both men and women they tend to be tidy, clean-cut, and hygienic. Nerds generally are self-confident in the academic setting and take pride in their intellect and band together with other nerds although their social skills outside of their academic obsession are diminished.

Dork:  Someone who has special interests like a geek but whose interests and obsessions are less common and odd, such as having an oddball collection of some sort like old Three Stooges bubblegum cards or an uncommon skill like yodeling. Walking talking Star Trek encyclopedic knowledge and convention dress up obsessions can be considered dorky. They can act silly at times and not care what anyone thinks. Dorks are typically more noted for their quirky personality and tend to be loners. Hygiene can sometimes be an issue. Dorks can nonetheless be self-confident and proud of the way they are because they simply don’t care what others think.

Dweeb:  A person who tends to be regarded as physically wimpish, intellectually challenged, and socially awkward, with little self-confidence. Dweebs tend to be obsessed with unusual pursuits like dorks (tap dancing or ant farms) but are lacking in skill, knowledge, or ability. Dweebs tend to be loners like dorks but understand their shortcomings and lack pride. Hygiene can also be an issue.

(found in this post by aint_no_life_nowhere)

By those definitions, I’m somewhere between a dork and a dweeb, with some nerd and a little geek thrown in.

But the fact that I even care says I’m probably all of the above.  :-)

And I know now that it’s rude (or my mom’s favorite refrain with my social skills going on the fritz, “not considered polite”) to correct people about which one I am.

Also I still love the word adorkable and apply it regularly to AnneC and her significant other.  ;-)

I’m putting this on the actuallyautistic tag because many traits attributed to nerds, geeks, dorks, dweebs, and every possible kind of hard-core Star Trek fan are heavily influenced by a strong contingent of autistic people, whether anyone recognizes it or not.

Oh and there’s no possible way for my weight to be lower than my IQ.  I weigh over 200 pounds.  And as for my IQ, last checked it was 85 (and before that, 120ish, and before that, 160ish).  And while some people will say that whatever your highest IQ was, is your IQ lifelong, doesn’t understand an IQ is a test score, not a Thing Lurking Inside Your Brain.  I know lots of autistic people whose IQs went either way up, or way down, with age -- in most cases, far longer intervals than mine were at.  

And please don’t tell me I’m too smart to have an IQ of 85, that’s a fucking insult, and not just to me.  Practically all my offline socializing is done with people with autism or intellectual disabilities, and you’d better believe many of them are smarter than people I used to know in gifted programs.  Smart isn’t some innate fixed quality, it’s what you do with what you’ve got.  And having known people who took great pains to make their meaning known in a hostile world that said their communication was meaningless, who struggled to say yes and no in any way they could even if those were the only words they could use (in word form or otherwise), each such person is really, really smart.  Much smarter than many of the “gifted” people I’ve known who seem to have had communication handed to them fully formed on a silver platter.

[ameliabaggs]

A Real Ring

[Image description:  My hand with a large ambe ring on it.  Words read: “A Real Ring” and “Amelia Evelyn Voicy Baggs”.  In the background are a number of objects, most notably my crochet box.]

My parents got me rings sometimes and I was always happy with them. The stones were plastic or glass, the metal was cheap, but they were adjustable so they'd grow with me. And the other parts seem logical to me given that I was always climbing trees and getting dirty. You don't want to spend lots off money on something that will likely break, fall off, or shortly be outgrown.  And, as mentioned, I was totally fine with this, until...

Catrina got on the school bus. She lived in a big looking beautiful house. Every year she'd invite the whole class to an elaborate Halloween party. The garage that led to the basement was transformed into a spooky maze. There were boxes you could stick your band into that set always grossed you out even though it was just cooked pasta or something. All kinds of activities.  You just weren't ever slowed into the main house, you had to stay in the basement.  

My favorite was pinball. They somehow had a while pinball machine in the basement that they'd rigged so it didn't need coins to run. I figured they must be really rich to have a real, big pinball machine in their basement. Plus Catrina was always putting on airs.

So when she sat next to me on the school bus, she had something she was dying to show me.  After unsuccesfully trying to get me to guess what it was, she pulled out her hand and showed me a ring.  “And it’s a real ring,” she said with no small amount of pride.

“A real ring,” I repeated.

“You know. Not like yourrings.”  And in a ritual that had become so familiar that, along with my innatepassivity, I didn’t even think of resisting, she grabbed my hand and flipped it over.  Then she flipped her own hand over and said, “See the difference?”

Actually, I didn’t, meaning-blindness and all.

She explained to me slowly and carefully as if talking to a child:

“Your ings are fake, they’re adjustable, they’re just pretendrings. They have a split in the bottom that you can use to change the size.  But real rings are a perfect circle.  Like mine…”

And she launched into a discussion of ring sizes, how to tell what size you are, jewelers, and the like, that was way too complicated for an eight-year-old meaning-deaf autie to follow.  

But when I can’t follow the words, I can follow something else.  I’d call it body language or tone of voice, but it’s not the same body language or tone of voice that nonautistic people, or even other neurodivergent or autistic people, tend to pick up on.

But since the autism world loves breaking things down into triads, I’d say there’s three things that make this way of reading people more likely:

Meaning-blindness:  The inability to get standard meanings out of what you see, which may seem jumbled or fragmented.  Often diagnosed or misdiagnosed as Irlen syndrome, Mearles-Irlen syndrome, or scotopic sensitivity syndrome.  But it only sometimes responds to tinted lenses or [;astoc

Meaning-deafness:  The inability to get standard meanings out of what you hear.  Not the same as Central Auditory Processing Disorder (CAPD), a condition in which language sounds are distorted and hard to comprehend.  But there’s a good deal of overlap between the two.  One rule of thumb is that if you can hear the words or other sounds just fine but can’t make sense of them, it’s pure meaning-deafness.  If the sounds are jumbled and reversed and fragmented, and some consonants sound like other consonants, and you strain to understand, it’s probably CAPD.  But most meaning-deaf people seem to also have some amount of CAPD, so it’s often a moot point.

Inability to read, or difficulty reading, the standard, deliberate body language and tone of voice that most people consider all there is to know about “body language” or “tone of voice”:  There’s a lot of body language that is deliberately used to convey certain ideas between nonautistic non-neurodivergent people.  For instance, I was nineteen years old before I learned (in the course of telling what I thought was a confusing story) that raising your eyebrows does not convey attentive interest, but rather conveys incredulity.  No wonder my teacher was mad at me for raising my eyebrows every time I wanted to show I was paying attention!

Anyway, in the presence of meaning-deafness and meaning-blindness (whether to a small degree or large), and the absence of standard abilities to pick up on body language, autistic people often develop other ways of reading people.  We read people through motion, through sounds (such as footsteps), through just about everything that nonautistic people would have trouble not conveying, because it’s hard to pretend something’s not there when you don’t know it’s there or how to recognize it in the first place.  

This is why I find those “autism tests” put out by Simon Baron-Cohen, using neurotypical ideas about stage conventions

to test autistic ability to recognize emotion (while forcing us to simultaneously use words and

process black and white still ultra-cropped photos for emotional meaning) infuriating.  They’re not asking for what the person is really feeling, they’re asking for what a certain percentage of nonautistic people thought they were feeling, and they put the pictures in the most unnatural settings possible to achieve this effect.  

Yonks ago, I used to know an autistic woman who did very poorly on her diagnostic testing, and therefore was diagnosed with autism. Why?  They hired actual actors to come in and show her exaggerated versions of emotions.  She responded by saying what the actors were really feeling underneath.  This did not go over well, to put it mildly.  But it amazes and amuses me, all at once, that she got an autism diagnosis for seeing through stage conventions straight into the emotions of the actors.

So back to Catrina.  I was seeing an insufferable amount of pride radiating off of her like heat waves over blacktop on a hot day.  I also saw something that now looks like insecurity, but at the time i knew neither the word nor the meaning behind it.  I saw “I’m better than you and I know it because I have something real and you just have fake rings.”

Nonautistic people  would’ve probably figured those things out too, but they’d have used different aspects of bod language.

Anyway, I always assumed that Catrina was rich and lording it over the rest of us.  Then, after I’d moved out on my own, my mom came by for a sleepover.  We discussed where all the members of my Girl Scout troop were now.

I talked about how rich Catrina was.

“Oh, no, no, Mandy, her family was poor.”

“But her house!”

“That was her grandparents, they paid for the house and let them live there.”

“So all that stuff about ‘real rings’ and all that…”

“…she didn’t want people feeling sorry for her, teasing her, or noticing how poor she was.”

“That makes sense.  It’s too bad when people have to hide like that.”

Meanwhile, recently (in the past year or two, my brain is still scrambled from dporiI bought myself the ring in the picture above.  It is made out of pressed amber.  When the sun hits it just right, it looks like a sunset of its own.  It sparkles with orange, yellow, and red.  It’s got leaves on one side in the same silver as the ring itself.  It’s elegant and beautiful And it’s adjustable.  And I defy anyone to tell me it’s not a real ring just because it doesn’t connect to itself in a perfect circle.

[ameliabaggs]

A humiliating moment at otherwise the most autie-friendly school I’ve ever encountered.

Two bits of background information:

When I was a preschooler, I went to the best preschool my parents could find me.  I don’t mean the way today that parents are always looking for competitive preschools that will supposedly give their kids a head-start on college and university.  My parents were never that kind of parents.  I mean that they searched high and low, literally, until they found a Catholic Montessori school in the forest in the mountains next to a convent.  The school no longer exists, but it was the most autie-friendly learning environment I have ever encountered.

Basically, everything was set up to be a learning experience.  All the toys were educational in some way.  They had set up places all over the room, and kids could just walk around and pick something to do.  Donna Williams says that the Montessori method works very well for auties who are very self-directed and would shut down if pushed into things by teachers.  She says they’re not as kinesthetically oriented as she’d like (and as another kinesthetic autie, I’d agree), but aside from that, the best ones have a lot to offer to an autistic child.

They were normally very flexible about my cognitive capacities, and I wish many of them were still alive and reachable so I could thank them for my only good school experience of my life.  An example of their flexibility is this:

The class was split into two groups, an indoor group and an outdoor group.  All day long, one group would play indoors, one would play outdoors.  Then we would switch.

I couldn’t grasp this, at all.  It was way beyond my reach cognitively and developmentally.  So instead of trying to drill things into my head that would never stay there, the teachers and nuns came up with a plan.  A new group:   Indoor-outdoor kids, who could go inside and outside as we wanted.  I was in the new group.  (I don’t know if anyone else was, or not.)

I don’t know how long I was at that preschool.  I feel like I went for two years, but maybe it was one year and a summer.  I know that my parents had to find a place that would work with a child who was not fully toilet-trained yet.  So I must have been there at the age of four, and possibly the age of three as well.  I loved it.  “Real” school came as a massive, horrifying shock to me.

Not that all was well at this school.  I was bullied a lot.  And if kids got near me, I screamed a high-pitched scream at the top of my lungs.  My mother was called in to deal with the screaming, and she saw me wiggling my fingers to myself.  She wiggled her fingers back, and I wiggled mine back. 

 To this day that’s one of our ways of saying “I love you” without saying it out loud.  So many parents of auties wait for their children to spontaneously without echolalia say “I love you” with their mouths, and they miss all the ways their children are saying “I love you” otherwise.

So that was my preschool, and that was the setting for one of my rare negative experiences with the teachers there.  (The kids are another story.) So another thing you should know about me, when I was that age I loved G.I. Joe.  I didn’t understand the show. I watched it with my brother sometimes when our parents were out, so we wouldn’t get caught watching “violent cartoons”.  (I figure it’s late enough in life that this confession will be amusing rather than something to get me in trouble.  :-))

But I didn’t watch it for the plot, and I couldn’t, at that age, understand the words.  I liked the word “Joe”.  that was it.  I liked the way it sounded, with the long “O” sound.  I liked the fact that the first two letters were cyan-ish and black, combining as a whole word (with the green E that didn’t contribute much) to a beautiful indigo color.  So when I heard G.I. Joe, I either was thinking of the sound of “Joe”, or its synesthetic associations.

So one day, as usual I carpooled to school with two boys.  I forgot their names.  I think one of them might have been Adam, not to be confused with a later neighbor.  Anyway, Adam and I were both wearing shoes we liked.

Adam’s shoes were camouflage and G.I. Joe themed.  My shoes were blue with shiny iridescent stripes on the sides in many different colors.  The color of dark blue that the shoes were, was the same color of dark blue that “Joe” formed as a whole word.  This becomes important later.

For most of the day at the preschool, we could do whatever we wanted.  But then there was “circle time”.  Sometimes they told stories, sometimes we played games.  This time, each of us was meant to skip around the circle while the class sang about some item of our clothing.  I only remember three people’s including mine.

“Andrea wore her princess dress, her princess dress, her princess dress.  Andrea wore her princess dress, so early in the morning.”

“Adam wore his G.I. Joe shoes, his G.I. Joe shoes, his G.I. Joe shoes.  Adam wore his G.I. Joe shoes, so early in the morning.”

Then it was my turn.  I repeated what Adam had said.  Part of it was echolalia, but part of it was that I thought that “G.I. Joe” was something I liked and we had to say “shoes”, and plus the colors, and I put together the muddle and said “G.I. Joe shoes.”

The teacher, rather patronizingly, gave me a long explanation that I couldn’t understand, but the bottom line was that my shoes were not G.I. Joe shoes so she refused to sing that they were.  I was almost crying.  So it became, “Amanda wore her changing-color shoes, her changing-color shoes, her changing-color shoes, Amanda wore her changing-color shoes, so early in the morning.”

I can’t explain the humiliation.  It’s similar to the humiliation I feel these days when nothing I can do for people is ever enough.  But whatever it was, I was humiliated.  The teacher probably never knew how much it hurt me, because she probably never knew how little I understood and how much was at stake sometimes in my head.  I don’t blame her.  She couldn’t have understood any more than I did.

[ameliabaggs]

Ancestral memory exists.

One more thing I can’t deny anymore.  (I’ve been in denial about a lot of things lately, and been trying to find ways of writing about them.)

I remember things from my family history.

They never made it into the family stories.

They are too embodied to be stories.  They have feelings in my eyes and ears and guts and insides and skin.  Stories don’t do that to me.

There are topics I can’t stand to hear about, topics that relate back to these memories, memories that aren’t mine, and I’m not quite sure whose they are.

Voicy Gladness?  Voicy Mae?  Henry?  Ron?  W.B.?  Russell?  Who knows?

All I know is that I have had memories that aren’t mine for as long as I can remember.  I don’t believe in past lives, and anyway some of the memories seem to come from people who are still living.  I do believe that people are connected in ways where things like this can happen, living or dead, through the sensing of patterns. 

Almost like familial PTSD.

Nobody talks about it but it gets passed down nonetheless.

And as I have said many times before, I am good at looking at the outlines created by what people talk about.  The outlines that form the shape of what nobody wants to talk about.

I will not give away the identity of this one elephant whose shape I found in our living room one day.  All I will say is that I asked a family member about the elephant, and xe told me that the elephant was real, and gave details -- shocking ones -- I had not been aware of every detail.  But the general shape of the elepahant was the general shape the family member described.  And I had the exact year and time period accurate too.

But that was recent, within or slightly before my lifetime.  The ancestral memories come before my lifetime.  Some of them are from true ancestors, people who are dead and came before me in my family.  Some of them are from people who are elderly but stiil living.  But they’re all real.

I don’t know how it works, only that it does.  I don’t believe in most explanations people have in it.  Both hard-core skeptics and true believers alike are wrong about most of their theories, I know that much.  My own theories tend towards seeing it as some people are better than others at recognizing certain patterns in the world, but even the best can’t do it on command.  There’s a random element that if you try to leave it out, it messes up your ability to get even semi-accurate results.  And even when you get pretty good results, they’ll never be perfectly accurate.   There’s always error that creeps in, and if you pretend there isn’t, then you’re not doing yourself or anyone else any favors.

[ameliabaggs]

[Photo descriptions:  The first three photos are photographs taken from under my hair facing the sun coming through my window.  Each set of four images has increased image saturation.  The fourth and mage is a picture of me somewhere between 1.5 and 3 years old.   We were in the woods and my mom had picked wildflowers in my hair, and wanted a picture.  My fingers on my left hand are playing with my hair.  My face has what nonautistic people would usually consider a blank expression.  My parents always called that expression "thoughtful".  I know because they said "thoughtful....." a lot and I eventually  (in adulthood) realized it was linked to my facial expression.  My mother now says she always knew there was something important going on when my face looked like that, she just didn't know what.  For me, usually when my face goes like that it means I've dropped all "normal" processing if I had it in the first place, and am more likely to be experiencing the world through sensing.  In the fifth image I appear to be pulling a ridiculous face, but I'll talk about that laer.]

Wow that melatonin really worked fast, I didn't even get all the way through the image description before I fell asleep.  I just wish it worked all night.  Emailing my doctor about that.

Anyway, the picture at the bottom is put in because often when i looked like that, I was seeing the world like the pictures above it.  My hair, with sunlight filtering through it, turns a whole rainbow of colors and always has no matter what color my hair was at the time.  I went from bald to brown to blond to all sorts of shades of brown including reddish brown, to black, and now it is brown or black depending on length and lighting.  But no matter what color it is, it's always had this iridescent quality.  The only way I have altered the above pictures at all, is saturation, and maybe brightness.   The first set are unaltered.

So that's what my hair looks like when it' between me and the sun and other bright light.  And this is one reason I don't want to cut it no matter how aggravating the upkeep can get.  It's a perfect place to hide behind.  And it's a perfect place to find rainbows no matter what the weather is.

I wonder how many other auties discover this about our own hair.  I have memories of being the age in this photograph, and looking up through my iridescent bangs.  This is one of my favorite pictures of myself, and one of my favorites of my mom's, too.  It seems we actually have similar taste in early chlldhood pictures.  She says she likes the ones where she was most able to capture who I was in a candid way, and she certainly did so here.  

here is a photo taken shortly after the last one, never fails to make family laugh:

[Image description:  Taken shortly after the last image, I'm sticking my lower lip and tongue out, and my head is facing the camera but my eyes are facing off to the side.  I'm still in the woods, and it's dark all around me.  I'm wearing denim overalls and a yellow shirt.  And, of course, the wildflowers in my hair.]

It looks like I'm just pulling a ridiculous face at my mom.  But if you look closer, my head may be facing the camera, but my eyes are turned away.  My lower lip is sticking out because I'd discovered how to blow my bangs upwards that way, which I must have been doing or about to do that.  And when I did that, I'd look upwards through my bangs and see rainbows.

This isn't just about how my bangs looked when they were backlit, though.  At this age, most of the time, my visaul system was not something I used to get meaning out of the world.  Oh, I could stare at the hillside, as I am doing in the first picture, and totally disappear myself into the reddish dirt until we were the same time. But I couldn't reliably use my eyes to see with.  I saw visual patterns, I played with my eyes like a toy, I blinked them repetitively, I pressed on them, I focused and unfocused them, I crossed anduncrossed them.

A later psychiatrist's report said something like "She played with her unuusal visual perceptions the way a normal chlid would play with toys."  And he wasn't half wrong.  Even when i began to be less meaning-blind, I still had all the visual distortions, fragmentation, tiled patterns, blotches of colored light, possible status migraine aura (which can do really strange things to visual perception), and all these things both made it hard for me to see things "as they should be", and easier to just get lost in the neverending light show.

So the other thing about the above photographs, is that's kind of how I saw the world visually all the time.  Not necessarily through my hair.  But I saw it as patterns of visual texture.  That's still how I see the world if I don't put a lot of effort (and assistive tech) into seeing the world with more conventional meaning to it.  But for a long time, this textured, patterned visual world was all I saw, or close to it.

All of the phoos are the way I actually saw my hair depending on lighting, what my eyes were doing that day, what my brain was doing that day etc.  And I see absolutely nothing wrong with enjoying what I can out of that, even if it makes other things harder.  

Also, I understand why some auties don't want their art pigeonholed as autistic art.  Or disability art.  Because the words become distorted.  You get a huge bolded AUTISTIC and a teeny tiny set of letters barely visible saying "artist".

But I feel like my art -- photography, poetry, writing, painting, crochet, knitting, whatever -- is heavily influenced by being disabled, and especially by the perceptual patterns of being autistic (for me, not necessarily for other auties), and sensing (which isn't required to be autistic, nor is autism required to be sensing, but they go together quite often).  And my art ofen tries to depict how I see or feel things.  Even when I'm not trying, it does that.anyway.  Additionaly, the way I approach creativity reminds me of a lot of autistic people I know, and I haven't met many nonautistic or nondisabled people who create things in the same manner.  So "autistic artist" doesn't bother me, but "AUTISTIC (artist)" does, immensely.

[ameliabaggs]

Synesthesia and Bedtime Routines

This isn't the post I meant to be my first post on this blog, but it fits the theme of this blog, so why not?  The other post is coming, it’s just very difficult from a writing standpoint.  Anyway, onward... this is long but the tl;dr at the bottom is very short.

When I was little, I had a bedtime routine so lengthy that my parents eventually drew up a contract with me, that if I got stars (for following a shorter routine) for… I think it was a week or two, they would buy me a toy.

The problem with the lengthiness was this:  It consisted of us repeating very specific phrases to each other.  Which could go on indefinitely.  And nobody knew why I chose the phrases I chose.  I figure they think I knew what they meant. I didn’t.  All I knew was that each phrase had developed a square of colors, and that listening to the phrases different orders made the colors show up in different orders. So I was content to let this go on forever, if need be.  Which, come to think of it, was probably really irritating to whoever had to put me to bed.  Just like, as I got older, my brother had to play a “bedtime game”, often invented on the spot since that particular brother was highly creative when it came to play, in a way I was not.  I tried to play the same gamessson

I don’t know when this routine started.  In the past, I would’ve just held a number out there like I always used to do.  For the time period I’m thinking of, I was probably 3 1/2 or 4.  But each time period in my life, I’ve always approximated like that. (1)

The Bedtime Ritual

It went like this (substitute any family member for “Dad”, everyone took part at one time or another):

Me: Goodnight Dad: Goodnight Me: I like you Dad: I like you Me: Have a good rest Dad: Have a good rest Me: I love you. Dad:I love you.

So there were four possible things to say.  One person (it didn’t have to be me) would start off.  The other person would repeat, word for word, what the first person had said.  I don’t think I could possibly have come up with the words on my own, given how far back I remember hearing them.

I assume this started with echolalia of things my parents would tell me if they tucked me in (like “effalump side up?” referring to a bedspread in my crib with elephants on one side).  Usually they said it while standing in the doorway, so I think this was the last thing they did before leaving.  And with the synesthetic, echolalic, and ritualistic qualities, it became the perfect bedtime ritual for a small autie child.

Anyway...

Goodnight:  a square made of blobby, wavy lines.  Some of the blobby lines were white, some were black.  There was a very faint tinge, barely there, along the right side of the black stripes, that was yellow.

I like you: the same shape of square as Goodnight, except it was yellow and white instead of black and white.  And the faint tinge was a slightly grayish teal color, which was wider than the yellow had been on the black but not as wide as the white and yellow colors themselves.

Have a Good Rest: Square, but that’s where the similarities stop. The background of the square is sort of a muted medium-to-light purple.

I Love You: Another square.  This one has the same purple background, same shade of purple.. Inside that, it has a smallish pink circle. The pink and purple are extremely similar in all attributes except hue.  Meaning that if a person with achromatopsia (3) would just see a solid-colored grey square.

So I liked to mix and match those colored squares in different combinations every night.  I distinctly remember not knowing what any of the words meant, but enjoying repeating them nonetheless.  Echolalia was a crucial part of this ‘game’.

But my parents thought I was stalling my bedtime.  They had good reason to think this.  My mom was working two or three jobs at the time, and if I’d had a regular sleep schedule, I'd rarely be awake to see her come home.  Actually, I often lay awake half the night anyway, and could see the reflection of the light from her car moving across my ceiling and stopping, at which point I’d run to the window to watch her get out of the car.  So my parents thought I was keeping myself up on purpose.

So they built a behavioral contract, complete with star chart.  And I’m a good responder to behavior mod.   So basically the two rules were:

No waiting up for your mother.

Keep the goodnight routine down to four things to repeat.  (Or as they put it, “a short, four-part goodnight”, which meant next to nothing to me, especially the “four-part” part.)

But as usual, my brain worked hard to fill in the blanks where I didn’t understand.  I learned to pretend to be asleep.  I learned not to run to my window when I heard my mom.  I learned to stop my synesthetic echolalia routine when my parents said stop.  I got toys every week or two for good behavior, until they faded that out and I still didn’t run to the window or look awake or any of those other things

I really wasn’t intending to deceive when I did things like pretend to be asleep.  For most children, that would be a conscious lie, even if no words were used.  For me, it was far more of “I don’t know the rules around here, they don’t make any sense at all.  I never sleep the whole night through, no matter what I do.  But if what they want is for me to lie down and close my eyes, I can do that too.  It’s boring as all hell, but I’ll do it."

I had all sorts of things I could do in my head to pass time when I wasn’t sleeping and wasn’t allowed to open my eyes.  Really they were the same things I did when I wasn’t sleeping and had my eyes open, because my room wasn’t interesting to me in the dark, and actually scared me somewhat.  It was a room that the previous parents had locked their children in on a regular basis — the doorknobs to the children’s rooms all were on backwards when we moved in — and I’m good at picking up on patterns like that, so I’m sure that’s where a lot of the raw terror came from.  I normally love the dark, but I don’t like being in the dark in rooms where bad things have happened or strong emotions have been unleashed.

When I moved out on my own for the first time, my parents had offered to let me stay with them.  I said “No thanks, I could live anywhere other than this house.”  And that was the truth.  I couldn’t explain it, I had no words for what I was experiencing (and still dislike the terms most people use on such things), but it was the truth.  There were problems in the next house too (in fact my landlord and neighbors warned me about it) but it was nothing compared to the house I grew up in.  There are just some places that highly sensing people should not be subjected to, and our first house that we owned instead of rented was one of them.  (I think that, as well as the fact that it was physically falling apart and ugly inside befoe we fixed it up, was one among many reasons it was cheap enough for us to afford to buy when until then we'd been renting much smaller houses and apartments.) 

I occasionally used to look in the real estate listings for that house, and people had a habit of buying or renting the house, and then leaving very shortly afterwards.  It has a dark, murky, violent atmosphere that even people who are fairly out of touch with sensing, can sense.

Anyway, this was just one part of my bedtime routine -- the last part. But I thought it was interesting because I realized that the words weren't the meaningful part, the colors were the meaningful part.  And, as usual, I am annoyed at the DSM for repeatedly making it sound like autistic people's routines and rituals are nonfunctional.  You'd think they'd work out that in a group of people who have trouble with transitions and a high  frequency of circadian rhythm sleep disorders, a prolonged and elaborate bedtime ritual is anything but nonfunctional.  I remember waking up once and remembering we'd skipped a part of my bedtime ritual, and screaming, because it felt like the whole world had tilted on its side.

TL;DR:  I had an elaborate bedtime ritual as a kid, and I just realized how much synesthesia and echolalia played into it.

Footnotes below cut:

(1) So, for instance, I’ve said that I was toilet trained “when I was three”.  That’s bullshit.  If that were true, my parents would not have had to search for a preschool that would take someone still in diapers at the age of four. It’s just that I have different divisions of time than most people have, and for each division, any number within the division will do for any time within the division.

So here’s some divisions:

0 - 1 1/2 1 1/2 - 4 4 - 7 7 - 9 9 - 12 12 - 14 14 - 17 17 - 19 19 - 25 25 - 27 27 - 30 30 - 34

You’ll notice that the times overlap. that means I can use 4 to mean either 1 1/2 - 4, or 4 - 7;  Generally there’s a division that will let me know which one to pick.  For instance, we moved from Campbell to a little pocket of San Jose surrounded on almost all sides by Campbell (and with a Campbell mailing address), but that was not, officially, Campbell if you looked on a map.  I think we voted in San Jose elections.  My brothers went to two different local public (taxpayer-funded, not the British term) high schools (high school in the USA is generally four years ages 14-18, but it can vary a bit, and it can eiher be numbered 9th through 12th grade, or, like university, freshman, sophomore, junior, and senior), and we had to count down the houses on the street to figure out which school district we were in.

So there’s one kind of 4 that means before we moved (even though I think I turned 4 after the move) and there’s another kind of 4 that means after we moved.

And if I say “I was toilet trained when I was 3,” what I mean is that I remember them trying to toilet-train me during the time period that includes the age of 3.  I’d sit on a potty chair and they’d give me a book, or sometimes (I think) play records or turn on the radio and wait for something to happen. Then they’d praise me if I did.  Occasionally they would sit me on the real toilet if they knew I had to go.  I clearly remember one instance of that where my urine burned all the way out, and I (unlike my general character in such situations) kept yelling, and my mom said I was “chapped”, whatever that means, and put some sort of ointment between my legs.  it worked.

But most of all, during the entire period of 1 1/2 to 4, I remember my father changing my diapers, his mouth hanging open, his tongue poking out that way people do when they're concentrating.  All I remember is his mouth.  He was probably trying to breathe through his mouth to avoid the stench.  People who are fully toilet-trained don't wear diapers.  The last I heard from my mom, I got out of diapers at the age of five or so.

Getting out of diapers, also, does not mean being fully toilet trained.  I remember having “accidents” long after age five.  And I remember using urine to scent-mark  the way cats do, since I have no seent glands behind my ears or in other convenient spots.  (Yes, I know about love apples. (2) No, that wouldn’t have worked here.)  

I gave it up somewhere in the 12-14 age zone, but I was incredibly gratified when I met a woman and her daughter who both had been called severely autistic and/or intellectually disabled growing up.  I am amazed at the tenacity it took to keep CPS away from her child, who was always happy and healthy when they visited.  But at any rate, they would both pee into a bowl, she would stir it up to mix their scents, nnd sprinkle it around their home.  I know exactly why they did that.  If I could get away with it (and I really, really can’t, not with an agency peering over my shouulder, not to mention the landlord) i would still do things like that.  Especially when long-term guests come.  I love the few people I'd invite as a guest, but smelling someone else's scent in my bathroom is difficult for me.  

Note to future visitors:  Please use my bathroom anyway.  i'll live, and if you're a guest here, you're a guest in my bathroom as well.  Plus in the winter the toilet seat warms you up, and if you're feeling adventurous you can try out the bidet built into my toilet seat.  I got it so I could be more independent in the bathroom, but honestly I think every home should have one.  They're more sanitary, you don't have to use it if you don't want to, and if you have guests who have trouble with any aspect of toileting hygiene, they won't have to be open about it unless they want to.

And now I wear adult diapers again — either Depends, or two pairs of overpriced cloth ones that I love, but that I obviously can’t wear all the time.  Which means there was roughly 5 to 7 years of my 34 1/2-year life, when I was fully toilet trained and never had accidents or needed diapers.  That’s 5 years if it was ages 14-19, and seven years if it was ages 12-19.  14.5%-20.3% of my life as it stands right now.

By the time I was 19, I was having accidents again because I couldn’t get to the toilet due to lack of services, mostly.  Generally, the more assistance a person with my sort of autism gets, the more we are capable of.  Donna Williams refers to this as the “straws on a camel’s back,” but others of us came to this conclusion about ourselves before reading anything she had to say on the matter.  In my case, if you took away my services I would probably be able to handle between 1/2 and 1 activity of daily living per day.  More on this in another post, I think it’s too important for a footnote alone.

(2) "In the Elizabethan Age, lovers exchanged "love apples" -- a woman would keep a peeled apple in her armpit until it was saturated with her sweat, and then give it to her sweetheart to inhale.” -Diane Ackerman, A Natural History the Senses

(3) Achromatopsia is a very rare condition in which a person is totally color-blind.  Most people who are color-blind, like my brot er, uncle, and (this is quite rare as bio-females tend to never ever be colorblind, though we are usually carriers) female cousin… they have certain shades and colors they can’t differentiate from each other.  Like my brother is red-green colorblind.  We had a dead pine tree in our yard — all the needles had turned brown.  My brother said “It looks all right to me!” at which point we had to remind him he was colorblind.  

My parents had him tested when he started referring to “colors” on our black and white television.  Like “That’s a pretty red dress she’s got on.”  But even he doesn’t have achromatopsia, just severe red-green colorblindness.  Our parents were told he basically sees most everything in shades of green, from blue to yellow and evyerthing in between.  He believes he’s only colorblind in dim light.  Everyone is more colorblind than usual in dim light, but I’ve seen enough examples, like the dead tree on a sunny day, to know that he’s colorblind all the time.

Here is the Wikipedia article on achromatopsia.

, if you’re interested.  Oliver Sacks wrote a book on it:

The Island of the Colorblind (print version)

The Island of the Colorblind (Kindle version)

The Island of the Colorblind (Nook Version)

The Island of the Colorblind (Audio cassette version, abridged)

[ameliabaggs]

A New Prose Blog

My name is Amelia Evelyn Voicy Baggs.  Most people in my everyday life call me Mel.  This post is the introduction to a new blog I’m writing, and an explanation of why I’m writing it.  I’ve had a lot of ideas for blogs on specific topics lately, and I’m slowly putting them together.

TL;DR:  I made a new prose blog to be similar to my poetry blog, because before he died, my father said my poetry meant a lot to him and he learned things about me that he didn't know before.  I wanted to make a prose blog that might serve the same function to people.  So here it is.

Shortly before he died, my father told me that he had enjoyed getting to know me better by reading my Wordpress poetry blog.  Not just the poems that dealt with my feelings about his illness and impending death, but all of them.  He said the poetry showed him a side of me he’d never seen before.  I’m really glad my poetry was able to do that, in a way that just talking to him couldn’t.  Poetry tries to use words for things there are no words for, which is why it can be such an intimate look into a person.

I also know how he felt, to an extent.  A few years ago, I asked my parents for one birthday present:  Their memoirs.  I’m the youngest child, by a very large margin, in my family.  That has always left me feeling like there’s all kinds of things about my parents and even my brothers that I don’t know, that I may never know.  

Being highly sensing, I was able to put together some things (which are too private for me to tell you, and I’m sorry about that) from the patterns in other people’s silences.  And to have them confirmed by other family members.  But those were big events, not the day-to-day lives of my family.

I was born in 1980.  My brothers were born in 1971 and 1966.  14 years of being a family that I missed out on, and that I don’t feel comfortable asking my brothers much about.  It’s their business, I wasn’t around for it, and maybe I shouldn’t know everything.

But I was delighted when my parents started sending me a pair of binders, with the first few chapters of their memoirs in them.  I learned a lot about them — what they said, what they didn’t say, how they said it.  

My father incorporated a lot of history into his memoirs, with pictures of things that happened, places he lived, things that affected his family directly like the nuclear testing in Nevada.  (The shock waves made it to my dad’s farm, and my grandfather’s cousin died as a result of being basically an Army guinea pig in those tests.)  His writing style would make an editor proud.  He used words that were easy to understand, his sentences were not too complex, he used neither too many nor too few words, and he used the right words in the right places.  If I didn’t know better, I’d have thought he got professional editing done.

My mother said she always knew my father had a book in him waiting to come out.  She just didn’t think he knew he had a book in him, until he started writing.  After he finished his memoirs, he went on to start a novelized version of our family’s part in the Okie migration to California.  He didn’t finish it before he died, but he left it for my mother to finish.  He dictated to her when he was too weak to type.  He was proud of being a writer, and proud that he and I were both working on novels at the same time.  Which means that now I have no choice but to finish my novel.  Not by my standards of choice anyway.  If it made him feel that good as he was dying, there is no way I’m letting myself abandon it.

Meanwhile my mother’s writing style was different.  More intimate, personal, and emotional.  She amazed me with the amount of empathy she showed at such a young age:  She wrote of being four years old and feeling bad for a mother who had more children than she could easily feed.  She grew up in a mostly poor and working-class mill town in Oregon.  She wrote about how her parents grew and canned their own food so that the family could eat during long stretches of unemployment,  My grandparents continued to grow their own food as long as they were physically capable of it.  It’s always weirded me out when the upper middle classes act like they invented the practice of growing food when you don’t live on a farm.

But I loved reading their memoirs.  Both of them told it like it was:  The good, the bad, and the ugly.  They both had great senses of humor about things, my father even drew cartoons of himself doing things like trying to build and operate his own cannon.  That showed me where one of my brothers got his tendency to do dangerous scientific experiments.  :-)

In fact, reading about their lives made me feel like I understood both myself and my brothers better.  My father has always called me a “Chip off the old Blockhead,” addressing letters to me as “Chip” and signing them “The Old Blockhead”.  But reading his memoirs made it clear that every single one of his children is a major chip off the old blockhead, just in different ways.  And same with our mother.  It’s amazing to me to see the personality and physical traits inherited from parents (whether through genetics or learning, we inherit it one way or the other), especially parents of several children.

My friend Anne has three rescued feral kittens, all from the same litter.  I know her cats very well without ever having met them, because she and I kind of share a brain, as her boyfriend describes it.  (He once said watching the two of us chat in World of Warcraft was eerily like taking a look inside Anne’s brain.)  I also see pictures of them, watch videos of them, hear stories about them, and interact with them over Skype.

Anne has a video of their mother, Coal.  It’s extremely short.  But in the 15 seconds or so that Coal is on camera, I could see, clear as day, mannerisms and personality traits exactly like those of each of her kittens.  And that’s how I felt reading my parents’ memoirs.  I could see how each of their children had traits that came from them in one way or another.  And I could see sides of themselves, and their families, that previously I’d only had glimpses of at best.

So I know what it means to get to know someone better through their writing.  And I am hugely flattered that my father learned so much about me through my poetry.

So I decided to make this blog.  This blog is the prose equivalent of my poetry blog.  As planned right now, it will not have any reblogged content except reblogging my own writing from my other tumblr, and reblogging conversations about the writing I put on this blog.  I plan to write things of a more personal nature on this blog.  I hope it works out as planned — I think it will at least make it easier for me to write personal stuff, knowing I have a specific place to do it in.  And I hope that my mother (and any other family who read my blogs regularly) can get out of it at least as much as she and my father got and continue to get out of my poetry blog.

I’m also thrilled that my dad got a chance to Be A Writer before he died.  He had a natural talent for it, far more than I do, in terms of writing things that can be easily understood by the reader even when the concepts are difficult.  And in terms of not needing much, if any, outside editing to produce outstanding prose.  He always said I have a way with words, and maybe that is true, but so does he, and he didn’t even know it until his seventies.

When he was first diagnosed with terminal cancer, he told one of my brothers, “If there’s something you want to do, do it now.  You never know how much time you have left.”  I think he really felt bad about not being able to fully finish his family history novel on his own.  I will try hard not to procrastinate on my novel, even though my NaNoWriMo was too filled with moving house and a dying father, for me to complete a rough draft.  I’m not sure whether to start over (same concepts, different wording) or whether to write now and revise for style later.

Anyway… Ron, if you can hear any of this from wherever you are, I dedicate this blog to you.  You’ve always encouraged me in my writing, even at times when I thought I’d never be able to write something.  And getting to know each other more as you were dying — and even more weirdly, after you died — has been a beautiful experience despite the backdrop of pain and suffering.  Knowing that my poetry had any part in that, encourages me to write more things of a personal nature, but not always in poetry.  And there may be prose poems that make it onto both blogs.

Anyway, thank you to both of my parents and brothers, for everything.  I’ve already got my first real post planned, it’s just been very difficult to write because it requires admitting things about myself that have always been intensely private.  Not negative, just private. But I feel like the time is right to write about them, and so I will.  This doesn’t mean I’m going to reveal every private thought or trait I had.  It just happened that the first post that seemed to fit the nature of this blog, entailed topics that I’ve always pushed myself away from, afraid of what they might mean.