awesome autism research: it exists

I’ve been wanting to do this for a while and now seemed like a good time for me to channel my energy into a constructive outlet such as thissssss. Because like…You guys. Most of the time autism science is “autism” “science” and it’s pathetic, but sometimes autism science is AUTISM SCIENCE and it’s faaaabulous.

FIRST: Laurent Mottron, Michelle Dawson and Co. 

I will openly admit to being obsessed with their friggen’ lab and all the friggen’ research they do ever. I have an entire file compiled of great research they’ve done recently here, but I wanted to directly link to a couple of my favorites:

“Veridical mapping in the development of exceptional autistic abilities”

  • My favorite scientific article ever written concerning autism. Hands down. No holds barred. I can’t talk about this enough. I’ll warn that it’s pretty theoretical, but it’s also fucking right. It explains and backs up theories/guesses I’d made as to how my brain organizes information. I am in love with this article.

“Learning in Autism”“The Level and Nature of Autistic Intelligence”

  • If I were the kind of person who called things “required reading” (I’m not) I would call these articles required reading. In however many years, someone somewhere will be teaching a class on Neurodiverse Science and these articles will probably be right at the top of that class’s reading list.

SECOND: Gernsbacher Gernsbacher Gernsbacher

The classy queen of sassy. Here is her file (less well stocked than the Mottron file, my apologies, but I highly recommend that you go to the “research” page on her lab website, as she provides most of her work for free download, like the cool lady she is). And, again, two faves:

“Infant and toddler oral- and manual-motor skills predict later speech fluency in autism”

  • It ain’t necessarily flashy, but the experimental work and cumulative findings Gernsbacher lays out in this article are a coup d’etat for self-advocates and non-speaking autistic people in particular.

“Mirror Neuron Forum”

  • I called her the classy queen of sassy for a reason. If you ever wanted to know how to completely demolish internationally prominent neuroscientists in a battle of citations and scientific rigor…this is basically a masterclass.

i call this section “smackdowns”:

“Are systemizing and autistic traits related to talent and interest in mathematics and engineering? Testing some of the central claims of the empathizing–systemizing theory”

“Are the Autism and Positive Schizotypy Spectra Diametrically Opposed in Empathizing and Systemizing?”

“Evidence for a Cultural Influence on Field-Independence in Autism Spectrum Disorder”

“Reflecting on the mirror neuron system in autism: A systematic review of current theories”

“Similar Brain Activation during False Belief Tasks in a Large Sample of Adults with and without Autism”

“Susceptibility to the Audience Effect Explains Performance Gap Between Children With and Without Autism in a Theory of Mind Task”

actually interesting/cool individual articles:

“Adults with autism spectrum disorders exhibit decreased sensitivity to reward parameters when making effort-based decisions”

“Anthropomorphic bias found in typically developing children is not found in children with autistic spectrum disorder”

“Seeing the Unseen: Autism Involves Reduced Susceptibility to Inattentional Blindness”

That’s all I have put together for the moment! If you that have trouble with the science/psychology theory jargon, Gernsbacher’s work is generally pretty readable, as are a number of the articles from Mottron/Dawson that are first-authored by Dawson (see “Learning in Autism” and the “Level and Nature of Autistic Intelligence” ones).

ENJOY THE LOVELY SCIENCE.

out of love

language is imprecise. and this post was prompted not by anything anyone has specifically said or done recently, but by my having come across a book that i hadn’t seen before. a book that made me very angry. so take this with a grain of salt: i am, truly, writing in anger.

i am done with people describing the things parents do to their autistic children (or pay others to do to their autistic children) as being “acts of love.”

yes, you love your child.

yes, your love for your child makes you feel all other emotions for them incredibly, often unbearably strongly.

but i want us to characterize things more precisely.

you do not expose a child to extreme biomedical intervention procedures out of love. you do so out of fear. fear and love are not unrelated, nor are they equivalent. you are afraid that your child will suffer if you do not do something about it. you are afraid you child is suffering now and you are morally required to try and stop that suffering. yes.

but your fear is not perfect, nor is it omniscient. i am afraid of many things that “make no sense,” that “aren’t really there.” contemplate what it is about your fears that allows them to be seen as legitimate, to be seen as sufficient reason to subject a child to any variety of potentially painful and traumatizing procedures.

is your fear legitimate because society assumes that nobody wants their child to be ‘r******d’? is your fear legitimate because it’s okay to hate the way your child acts, so long as the way your child acts is “socially inept” or “inappropriate”? is your fear legitimate because the fears of people with words and authority are defined as such, while the fears of people without words, or without authority, are seen as illegitimate (or even nonexistent).

just because your emotions are socially appropriate, or recognized, or encouraged, does not mean that you are allowed to make decisions for others based solely on said emotions. in fact, in many cases, simply the fact that your emotions are considered socially appropriate should prompt you to consider how your perspective, and your feelings, implicitly silence and ignore the emotions of those with less power and voice than yourself.

your emotions are real. they are not reality.

love sometimes means fear, and sometimes means anger, and sometimes means happiness, and sometimes means frustration, and sometimes means contentment, and sometimes means any number of other emotions.

love means a lot of things. but it is not an excuse.

languaging translation

we say “behavior is communication” a lot. because it’s true, and important.

it is also a vast, vast understatement.

because here’s the thing. communication? it’s behavior. it is, and it will continue to be, no matter how many times the powers that be try to teach us that language is a set of rules, a dictionary, a grammar-work book or a computer program. language is the way we change and move with our world, patterned and pulled through like fabric and thread.

so when we say “behavior is communication” we don’t just mean “when your kid has a meltdown, there’s a reason for it.” we mean “look at how your child moves, and where, and when. how do they move with people? how do they move alone? when are they still? if they sing and speak and pattern-repeat, what part of their environment plays the tune they’re talking to?”

part of the difficulty, of course, is that being autistic doesn’t just mean dealing with normally constructed language differently: it means constructing a language for yourself differently, abnormally, atypically. most of the time, the same rules you use to learn spanish or german or english or whatever in school will not apply to the language of an autistic person: we use smaller things and make them mean more, or larger things that mean something small.

sometimes we make our patterns in different dimensions than most people–sideways not time-ways. jokes that are funny not because they say a funny thing, but because when you layer the first context you experienced for these words on top of the current context you’re using these words in, the combination of the two is hilarious. scripts that mean feelings, because the origin of the script is a scene full of that feeling. even scripts that mean feelings because the first time you heard them, you were feeling full of a certain feeling. sometimes it’s like we live a life full of songs reminiscent–your breakup ballad, wedding dance music, earliest church hymn…all these are the size and heft of our voices on repeat.

just because someone speaks the words you speak doesn’t mean that their language is like yours–we build our ideas with different materials, in different environments, for different reasons. the next time it seems like we’re going in circles with our mouths or our minds, remember: even as we circle, time is passing. now is different from one moment ago, which was different from two moments ago, and that means every time we do a circle, the circle has changed. maybe only infinitesimally. but truly. and sometimes circles can get wider, or narrower; sometimes it might look from above like we’re tracking the same path, over and over into the ground…but if you climb down onto the ground at our level, you’ll see we’ve been spiraling up to the sky, or carving down into the center of the earth.

just because someone doesn’t speak words doesn’t mean that they do not language at all–to live in a world is to language, no matter what. you have to learn their language the way you learned words as a baby–open your eyes, look, feel what happens in the space around you, and wait. find their vocabulary–but also their medium. do they bounce and swing around the world like gravity is the only touch holding them together? are they enchanted with the corners of things; your shoulders and elbows and cheekbones when you move? do they sing so that the air around them is always vibrating at just the right wavelength?

i could go on. i could tell you about how technically, everyone speaks their own language. how nobody communicates by sending signals in some universal code, not really. i could explain how we’re always grabbing handfuls of the air that other people shape around themselves, and pulling them through ourselves, like thread and needles and fabric (again, and again) until we’re all haphazardly woven together by those pieces of our worlds. i won’t go on though. there’s too much still to learn.

here’s an echo. wait. stop listening. start listening.

When I think of the patience I have had
back in the dark before I remember
or knew it was night until the light came
all at once at the speed it was born to
with all the time in the world to fly through
not concerned about ever arriving
and then the gathering of the first stars
unhurried in their flowering spaces
and far into the story the planets
cooling slowly and the ages of rain
then the seas starting to bear memory
the gaze of the first cell at its waking
how did this haste begin this little time
at any time this reading by lightning
scarcely a word this nothing this heaven

(“Just This” by W.S. Merwin)

once upon a time

i am notoriously picky. food, clothes, sounds, activities. it’s a thing. but like, none of that even compares to the level of pickiness i display when reading.

it’s not just a stylistic thing, it’s also a rhetorical and logical thing. and an associative thing. i can feel the parts of the iceberg below the surface, and a lot of times i don’t like what i feel. when i annotate readings for research purposes, the most frequently used word in my notes is usually “ew.” once i was working outside of my lab, reading for a project, and looked, apparently, so displeased that an acquaintance sitting nearby concernedly asked “emma, do you ever get to read things you actually like?”

“rarely.” i said.

this past january, i read a post on a blog i liked that i felt so intensely about that i commented on it. i’d been reading the blog in question for a while, primarily because it was one of the few things written by the parent of an autistic child that i actually liked reading.

(when it comes to non-academic writing, my tastes are as refined as they are idiosyncratic: in order to be serious and responsible and open enough to talk about difficult things, you have take yourself pretty un-seriously. it’s difficult. few people manage it. but this blogger did.)

a few hours after i’d commented and gone on my merry way, i got an email. the blogger in question wanted to ask if it was okay to post my comment as it’s own post the next day, because it said such important things. there was also a quick note at the end of the email: the blogger had recognized my college email address. she’d gone to that same school.

it’s seven months later. now i write a blog myself. (sometimes). i’m seven times more impressed with jess now than i was in january.

it’s very hard to be open to the possibility that other individuals might have greater insight into even the more intimate, private aspects of your life. it’s even more difficult to be open to this possibility when it comes to the intimate, private aspects of your parenting.

and blogging as a medium makes it easy to let your compassion and concern overflow into a kind of facile identification with all those “in need.” liking the sound of your own voice is kind of a blog pre-requisite (one that i’m in no way exempt from), and when you combine a basic sense of responsibility to others with a love of talking and a broad media platform, the result is often…rather tasteless in it’s earnest ignorance.

jess likes talking about other people talking. she likes asking questions, asking for help, asking for understanding, asking for open-mindedness. she really, really, really likes candy crush. and emailing tiny messages back and forth with me on our iphones. i have sent her a sum total of three separate photos that show me holding really intense waffles. we haven’t actually met yet.

people like jess (whether non-autistic, autistic and otherwise) don’t come along that often. they have to have an unusually intense predilection for self-critique, without getting buried under it; they must love people in general enough to truly dislike people in particular; they have to retain enough childlike wonder that it never turns into an excuse for thoughtless behavior.

jess is very short. she likes bad jokes. her voice sounds like she’s about 16 years old. the one time i asked her if she’d do me a personal favor, she responded having done something like four times bigger than what i’d originally asked. every time something new in the world comes up, something hard, some point of contention i expect will cause others to disappoint me, and cause me to disappoint others…each time i keep expecting the other “jess shoe” to drop. it doesn’t happen. not because she never messes up, but because she’s not surprised when she does; because even when she messes up bigtime, jess doesn’t stop being jess.

this was a happy birthday post, because people always will ask me, in arguments: “what do you even expect us to do! not everyone can be perfect all the time! stop being so over-sensitive. what you want isn’t even reasonable.” and i can now say “do like she does, and you’ll do good.” side-affects of doing like jess does may include: crying every five seconds, using too many hashtags, crying, writing really beautiful posts about life, writing really beautiful posts about the most random things and crying.

don’t worry though. it’s worth it.

happy belated birthday.

keep in pocket

this was a conversation that happened in one of the threads on jess’ diary of a mom facebook page. it was in a public area, but since i don’t know the other women in it personally, and they don’t necessarily know this blog, i blacked out everyone’s last names (mine included) and gave us all cute little colored ovals instead of profile pictures.

most of the time, talking to people about problems that are hard, and complicated, it just doesn’t go well. especially when it’s the kind of situation where it’s not hard for someone to take someone clearly, but politely, critiquing them and interpret it all as a personal attack. and especially, especially, when you’re trying to discuss how someone is parenting their child. their autistic child. so often it can be so hard. hurt everywhere all over everyone.

but it isn’t always so hard. it does not have to hurt.

miraculous things happen sometimes.

(click each photo to enlarge)

                              ONE                                         TWO                                     THREE

0001dT 0002QK 0003G6

FOUR                                          FIVE

0004ER       0005FN

“He looks with his hands (wow).”

I almost started crying.

This one goes in my pocket for keeps.

[And, in case anyone is wondering how much time I had to spend screenshot-editing and re-sizing and formatting to make this post look like this…The answer is that it took basically fucking forever. ‘Cause I like. things. nicely. aligned. Alignment is always worth it. Always.

autism science comedy hour (hosted by me)

Your semi-annual autism science public humiliation and general roast will be commencing in five, four, three, two, one…

Our first roastee is an article from a FrontiersIn publication. The title of this article is “Atypical resource allocation may contribute to many aspects of autism” (I am refraining from naming authors, because I’m nice…except if they’re a known habitual offender, in which case I will say their name as many times as possible while mocking them).

This is an article that wants everyone to know that part of autism might be that like, in autism brainz, less stuff that’s like normal stuff is happening, and that’s probably because more stuff that’s like not-normal stuff is happening. Because brains have like, energy or something, and you do stuff with energy or whatever, and autistic people probably do different things with their energy. This makes sense, because autistic people, like…do different things.

It is mentioned that autistic people with severe sensory symptoms probably do even fewer normal things with their energy than less sensory-severe autistic people. But the author feels really not like sure about what the whole deal with that is, because like if different attention things and different sensory things lead to different “resource allocation” like…Uh…Oh wait, the “resources” in question are actually explicitly left undefined by this researcher because like, defining the word this article is focused upon would somehow ruin science, for reasons escaping understanding.

Also P.S. the author is inexplicably convinced, from the beginning of the article, that the causal chain goes: 1. Autism is like weird attention to stuff. 2. That means stuff inside the attention-brain things works different. 3. So like, there’s “atypical resource allocation.”

I would like to clarify for this author, if he/she ever reads this. It actually goes like this: 1. You wrote a fucking fourteen page FrontiersIn article. 2. In the entire fourteen pages, you never define the concept you named as your fucking central focus in the title of the article. 3. I tried to read this bullshit. 4. Now my brain is really damn tired.

The End.

Our second roastee: An actual PNAS (Publication of the National Academy of Sciences) article.

The title of the article is: “Children with autism are neither systematic nor optimal foragers.”

Just gonna leave that right there. Not gonna contextualize it, because there is no real context that could make this title seem anything other than non sequitur and hilariously weird.

That is all.

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