Lazy-Blogging

Because I’m not in the brain for writing lots of posts right now, I decided that I can repost some of my comments (a kind of “Best Of”) since I generally write novels for comments. This was originally a comment I posted on Diary of a Mom’s post in January, that ended up being it’s own post (it’s how we internet-met, how cute!) But I think it can deserve it’s own post now. Yay!

“As an autistic person, I know how difficult it can be to hold out hope that someday, somehow, someone you love will speak your language back to you. And it is similarly valid and important for neurotypical parents or teachers to feel hopeful about their relationships with others (autistic or not). So, to parents: Yes, please; feel hopeful for your child’s future. Believe that, given the appropriate accommodation and validation, your child can be a happy, fulfilled individual. Believe that they are capable of unlimited, unpredictable growth.

But, at the same time, please, please, please examine the sources and the structure of your hope. Do you believe that typical behavior and communication reflect the “natural” conclusion of a universal process of growth? Do you only consider a change to be “growth” if it results in your child acting in a way that you find more relatable or comfortable? The reason it is important to “presume competence” is not because all people are capable of displaying “competence,” given enough time and encouragement. We must presume competence as a way of acknowledging that competencies exist independent of our ability to identify and interpret them.

Please, do not presume that all people are capable of social “competence” given sufficient support; instead presume that all people’s sociability is somehow a competent one, even when you do not understand it. Please, do not presume that all people could learn to converse “competently,” given sufficient support; instead presume that all people do converse, even when their responses or reactions fall outside of communicative norms. It is important to spread the kind of hope you talk about, a hope-as-presumption-of-intrinsic-awesomeness, because differences are valuable and “normal” definitions of personhood are damaging. But it’s especially important because the easiest way to isolate and silence atypical people is by assuming that the natural, universal consequence of any person learning and developing is that they become normal/more relatable to you.

When a parent talks about how they still hold out hope that their child will someday spontaneously have whole spoken conversations about social stuff/feelings with them, even though their doctors prognoses are like absurdly terrible, I am conflicted. Hope and optimism are not incompatible with prejudice and narrow-mindedness, and the combination of the two is especially complicated to discuss. I can want parents to experience the sense of engagement they seek with their child while simultaneously rejecting what those parents want their child to become. This is a kind of hope I cannot live without; that anyone, any parent, any child, is capable of building something with others…even if at first, it might seem impossible.

When I think about parents or teachers hopefully working, and waiting, for a child/student to “develop” normalcy, I am struck by the impossible task that child has been given. Nothing they do or say will mean anything until they are judged to have communicated what they mean. I can say, from personal experience, that it is impossible to communicate with people if their only response to my language is either to ignore it, or say that it is incomprehensible. Assuming your language is the only possible language and, therefore, the natural end product of human development is just another way of assuming that anything you don’t understand doesn’t matter (or even exist). Both assumptions are, in my opinion, indefensible.

Any two people who speak different languages must presume the other is trying to communicate, despite their incomprehensibility, in order to start building a third language they can share. That respect, and acknowledgement of valid difference, will always be a pre-requisite for building a language with other people. And building a shared language is always a necessary first step if one person hopes to become fluent in the language of another. Your post (and your whole blog, honestly) are a damn great example of what building a shared language can look like.

 

Advertisements

PSA

(because not only do other kids need people to know this…i actually need people to know this. right now. in my life.)

your child’s therapist is your child’s therapist.

your child’s therapist is not your therapist.

the point of your child being in therapy is that they feel better and that they can do more of what they want.

the point of your child being in therapy is not that you feel better and that your child can do more of what you want.

if you need to talk about painful and difficult emotions that you’re having about your autistic child and their behavior, the person that you should have that conversation with is your therapist, or your friend, or your spouse, or your parent. not your child’s therapist.

helping your child feel safe might mean that your child’s therapist has to tell you things you don’t want to hear.

the only accurate measure of whether or not your child is doing well with a therapist is whether or not your child feels safer, happier, more able to cope with the world, more able to do what they want.

the end.

scan copy 3

I am probably around seven, sitting in the living room of a family friend in a purple, white and blue pair of sweatpants and matching sweatshirt. There’s a little fluff-dog sitting near me, and I have a dog-toy ball in my hand. I’m looking in the vague direction of the camera, and making my default picture face–sticking my tongue out as far as I can, like a happy dog.  

 

things that can be over now

things that can be over now: the whole “disability simulation via youtube video/ipod/other weird shit” trend. that can be over.

you see, i get that this video (below) is nice and all. and that it draws attention to sensory sensitivity, which somehow gets lots in the whole “your child has no soul” tone of things, nowadays.

but that doesn’t mean i have to think this is either constructive or appropriate. and so now i’m going to make a list of all my annoyed thoughts about this video, because i can. also because i’m in a bad mood today. so there.

  • i love how this person’s vision supposedly stays completely clear and functional while also being so over-loaded that the surface of the couch is blurping. yes, that’s a word.
  • i have no idea why this bothers me, but i find it random and weird that all the sounds are being synchronized. as if for some reason sounds being predictable and symmetrical and covering each other up would be more stressful than a fucking unpredictable chaos of weird noises?
  • the fuck is this kid? some kind of magic being who can project himself and walk around a room in ghostly form while his actual body sits at a table? they literally pan the whole room and like zoom in on feet. how do we know he can even see the feet? like ugh.
  • also, by the way, given that this video is supposed to be an example of how sensory stuff is so stressful, i’m confused as to why this dude is just chilling at a table like it’s no big deal. that might actually be the least realistic aspect of this video; it’s a video about the struggles an autistic guy has with sensory sensitivity in which said dude sits calmly at a table while his family watches cartoons.
  • on the subject of the family: why the hell is this kid like, sitting at this table alone in a room full of shitty sounds and visual patterns while his mom and sister sit and like watch cartoons together with their backs to him? OH RIGHT i forgot autistic people live in exile within their own homes because they’re incapable of relating to others. GOTCHA.
  • i feel relatively comfortable speaking for at least most of the variously disabled people i know when i reply to this (and any number of other) random half-assed simulation by saying “not only is this like, not a very good simulation at all, but like…if you did this and thought ‘oh my god that’s soooo hard! i feel soooo bad for them now!’ then congratulations on being kind of a giant condescending wuss? i mean seriously.”
  • i love how they drag it out for you. you’re just waiting and waiting and wondering and waiting and YEP the autistic kid is being played by everybody’s favorite stereotypically nerdy, pimply upper-middle class white boy. great. thanks. lovely.

in pre-emptive response to the guaranteed question that comes in response to rants like this–the “but doesn’t it serve some purpose? it helps people understand? what else could they do?”–my answer is that the only purpose this serves is that of allowing people to pat themselves on the back for “widening their horizons” by watching a two minute youtube video. i can’t come up with a single thing that you could take away from this video and use to strengthen/start a relationship or interaction with an autistic person.  literally nothing. other than like “sounds are sounds sometimes and ugh sounds” or “don’t cover your household in really terrible prints” or “if you’re a couch, please don’t blurble.” and the reason you don’t learn anything besides that stuff in this video is because you’re not supposed to. hence why we don’t even see the fucking autistic person himself until the last frame. he’s a side note. a “p.s. here’s what they look like.”

at the end of the day, the worst part about disability simulations for me will always be that they’re a method for promoting disability “awareness” that aggressively centers the non-disabled person. it reinforces their presumption that all the things they need to know about disabled people they can learn on their own, from other not-disabled people. as well as their presumption that a disabled brain/body is just a messed up version of their own brain/body. and their presumption that it’s possible to understand what it’s like to live a moment in someone else’s place without taking into account their actual life. their childhood. their history. their growth.

at the end of the day, the only appropriate answer to “but what else could people do to learn about disabilities?” is to tell them that they’re asking the wrong question: it should be “what could people do to learn from disabled people?” and the answer to the better question would be: “live and share and communicate with them, because they’re people and that’s what people do with each other.” the. friggen’. end.

because it’s worth quoting at length

say hello to one of my favorite things written on autism research in the past 10 or more years. unsurprisingly, it was written by michelle dawson, isabelle soulieres, and laurent mottron, aka three of my research-heroes. i am straight up going to just quote from this chapter in a book (while providing the citation, of course) and make that its own damn post. it’s that good.

[Citation information: Mottron, Laurent; Dawson, Michelle; Soulieres, Isabelle. “A different memory: Are distinctions drawn from the study of nonautistic memory appropriate to describe memory in autism?” Memory in autism: Theory and evidence. Boucher, Jill (Ed); Bowler, Dermot (Ed); New York: Cambridge University Press, pp.311-329.]

Ethics: how should life forms be described?

The grasping and locomotion system of squid consists of ten tentacles and uses water for propulsion. This system is only awkwardly described by using concepts tailored for humans. A ‘humanocentric’ description of squid would be that they have 2.5 times more arms and legs than us, that these legs are boneless, and that they move by jumping horizontally under water. Apart from being distinctly unparsimonious, this description would be misleading. It leads to the inference of nails at the end of squid extremities, and to erroneous assumptions re the effect of boneless squid legs on how fast they can swim compared to humans. Fortunately, the strategy scientists use to describe squid does not take the human case as its reference point. Even when squid were first described, scientists were not baffled that cephalopod mollusc tentacles lacked nails; the difference between human and squid life forms is large enough to protect against the comic or tragic consequences of ‘humanocentrism’. 

However, in a situation where a scientist with an excellent knowledge of fish is confronted with a life form he has not seen before–a squid–he might describe this discovery in reference to fish. He might make statements like ‘Squid are disordered fish. They have superior prehensile abilities, but inferior skin resistance’, etc. But accepting the emergence of ‘tentacles’ and other squid-specific concepts, rather than persevering in using fish-oriented concepts, is closer to the idea we have of science. A scientists interested in an accurate description of squid would develop, if they did not exist already, hierarchical taxonomies which, at a general level, use concepts (e.g. limbs) that encompass phenotypic differences among life forms and, at the specific level, are tailored to the described life form. In this chapter, we consider the hypothesis that neuroscientists who describe autistic cognition often behave like fish-experts who refuse to invent a concept for tentacles, and describe squid as impaired fish.

Ethics: the presumed dangers of analogies involving different life forms

Serious concerns and objections are usually raised when an analogy involving different life forms is applied to the situation of describing autistics. The spectre of dehumanization, past and current, is invoked by an assumption that any reference, even via analogy, to a different form of life necessarily means a life that is less than or other than human.

In the case of autism, these ethical qualms can only be described as ironic. Scientists in various fields have proposed that autistics teach us about what is fundamentally and uniquely human–because it is this essence of humanity that autistics lack (Bloom, 2004; Hobson, 2003; Pinker, 2002; Tomasello et al., 2005). We therefore contend that it is the biased description of autism from a nonautistic standpoint that provides the foundation for the unethical dehumanization of autistics (Dawson, 2004a, b). The use of concepts such as ‘positive/negative symptoms’, ‘excesses/deficits’, ‘spared/impaired’, etc., to describe autistic behavior and cognition does not result in a description of intrinsic autistic features, but instead creates a concept of autism based entirely on criteria relative and relevant to the functioning of nonautistics. This knowledge in turn represents the scientific foundation for the project of ‘curing’, preventing, remediating, or otherwise eradicating autism, a project whose ethics remain unexamined and uncriticized. Autistics and allied nonautistics have responded by promoting an approach of neurodiversity, in which humankind is heterogeneous, and in which autistics should receive the assistance, accommodation and respect they need in order to succeed as autistic people. The recognition and acceptance of human difference, and therefore the humanization of populations previously set aside from humanity, is at the core of neurodiversity, while its opposite, normocentrism, is the root and rationale for dehumanization.”

Continue reading

dropping the other shoe

for my entire life, the rule has been that if i make a mistake or have trouble with something, the consequences for that involve me losing something i want, or not getting to do something i was looking forward to. this might not seem too unusual or medieval a punishment to some people. unfortunately, the long-term effects of this are wreaking havoc on my life and schoolwork.

every single assignment, every responsibility, ever chore, every interaction, ever finals period, becomes an opportunity for me to stumble, mess up, or fail to meet expectations. which wouldn’t be a problem, except that when i stumble, mess up, or fail to meet expectations, people frequently impose serious consequences. like when i was in middle and high school, and every late or missed assignment could get me disallowed from doing theatre, or disqualified from moving up into the honors classes i wanted to be in next year (this happened three years in a row). and even if the consequences weren’t this severe, there would almost always be a lecture, a frustrated argument, a “family meeting.”

it’s not that i think consequences in general are bad. it’s just that i had no control over my ability to meet the expectations that others had for me, and they assumed that i did. i was punished for not doing things i wasn’t able to do.

i don’t think it’s possible to explain what this feels like now that it’s part of my body. it’s…terror. i turned in a paper very late for the first time in a college class during my sophomore year, and when i went to talk to the professor, i told her about how i’d only slept one hour a night for five nights trying to get it done and study for an organic chemistry final but i’d eventually just gotten so exhausted that i couldn’t keep writing and had to take a break. she said that she wouldn’t take any points off for lateness, because she felt i’d already “punished myself enough.” i almost burst into tears. i didn’t understand what that meant, actually. nobody had ever said something like that to me.

when it comes to autistic people, diagnosed or otherwise, people are constantly turning small events, individual assignments, tiny milestones into reasons for shutting off entire avenues of opportunity and chances to do things we enjoy. i’m a very intelligent person, and this kind of an attitude almost killed me. i’m not exaggerating. it runs my life.

it might seem scary, or even just unrealistic, to leave things open-ended. to throw most deadlines out the window.

i get that. trust me.

the consequences of not throwing this shit out the window, however, are incredibly dire.

scan0002

I’m like two years old and am naked with a towel-blanket on (it’s the kind that has a hood so you can wear it as a cape). There are various books and shoes and clothes scattered around the floor. As you do.

representation

my slow, and anxious path towards self-diagnosis was kind of a long time coming; i’d spent my entire life trying to disentangle who i was, and why i was so different from other people. i literally read like huge books about myers-briggs personality tests and the big 5 and astrology when i was in elementary school, just desperate to have some explanation that rang true for me, and told me about myself. this never really panned out. probably because i’m too weird.

but in college, after a semester or two had started to show me that my mind was…rather unusual (in a good way, not just a bad way), i started to spend more time reading about how people understood things. how people solved problems. particularly famous thinkers and scientists and authors and such–the people with biographies and such that i could read, and letters archived for me to look over. that was, honestly, when i finally felt…not alone, really. i never got to say it; nor did i ever really try to: you can’t like go around telling people that you think just like virginia woolf, or henri poincare, or richard feynman did. if you did that, you’d sound like a pretentious ass. i try not to sound like a pretentious ass. try being the operative word here.

but i hold those biographies and quotes close to my heart, if only because they confirmed for me that i wasn’t crazy–or at least, if i was, i was the kind of crazy that you can’t not love, as well as hate. i have strong feelings about retrospective diagnosis when it comes to historical figures. saying “oh, so-and-so was totally autistic, or totally has aspergers” gives current diagnostic labels more credit than they deserve. but what i do approve of, and actually heartily encourage, is sharing and noting instances of people in history who possess similar traits, similar difficulties, and similar strengths as people that today get labelled autistic; this is how we can say “why is this a ‘disease’ when i do it, but not when famous-scientist-x did it? what purposes do these labels serve today?” i think this is more constructive than anachronistic armchair diagnoses of famous people.

this is my (lengthy) preface to some bits from a biography of barbara mcclintock (by evelyn fox keller DUH because she’s great), one of the most brilliant developmental biologists/geneticists of the twentieth century. i first read some of these quotes in other books about creative people and famous scientists, and immediately said to myself “THAT’S THE THINGS.” i think that barbara’s mind, and life, speak for themselves, though:

By McClintock’s own account, her ‘capacity to be alone’ began in the cradle: ‘My mother used to put a pillow on the floor and give me one toy and just leave me there. She said I didn’t cry, didn’t call for anything.’…Machines, tools, and the skills of mechanics were a bond with both uncle and father. ‘My father tells me that at the age of five I asked for a set of tools. He did not get me tools that you get for an adult; he got tools that would fit in my hands, and I didn’t think they were adequate. Though I didn’t want to tell him that, they were not the tools I wanted. I wanted real tools, not tools for children.

When Barbara was back at home, her relationship with her mother became more distant than ever. A resounding ‘No!’ greeted her mother’s attempts to embrace her…The experiences she valued most as a child were solitary ones. She was an avid reader, and, best of all, she loved to sit alone, intensely absorbed, just ‘thinking about things.’ All of this sitting alone worried her mother: ‘She felt there was something wrong,’ Barbara remembers. ‘I knew there was really nothing wrong; my sitting there was related to things that I was thinking about.’…Barbara loved music, but piano lessons with her mother were soon discontinued, for she applied herself to the instrument with a painful intensity that Mrs. McClintock felt could not be good for her. With another teacher things were no better, and piano lessons stopped altogether. ‘This intensity, or this sense of feeling disturbed about situations, or taking them too difficultly, led me to be taken out of school on several occasions.’

 

The portrait that emerges from McClintock’s recollections so far gives us only glimpses of the characteristics that would be so important in defining her as a scientist. As a child, McClintock had a striking capacity for autonomy, self-determination, and total absorption. But what was truly exceptional was the extent to which she maintained her childlike capacity for absorption throughout her adult life.

A crucial component of this capacity was her wish to be ‘free of the body.’ She’d had a taste of this freedom–first as a young child ‘flying’ along the beach, and, later, at moments of special concentration in her studies. ‘The body was something you dragged around,’ she says. ‘I always wished that I could be an objective observer, and not be what is known as ‘me’ to other people.’ Sometimes she managed even to forget her own name. She laughingly tells a story to illustrate how well she sometimes succeeded: ‘I remember when I was, I think, a junior in college, I was taking geology, and I just loved geology. Well, everybody had to take the final; there were no exemptions. I couldn’t wait to take it. I loved the subject so much, that I knew they wouldn’t ask me anything I couldn’t answer. I just knew the course; I knew more than the course. So I couldn’t wait to get into the final exam. They gave out these blue books, to write the exam in, and on the front page you put your own name. Well, I couldn’t be bothered with putting my name down; I wanted to see those questions. I started writing right away–I was delighted, I just enjoyed it immensely. Everything was fine, but when I got to write my name down, I couldn’t remember it. I couldn’t remember to save me, and I waited there. I was much too embarrassed to ask anybody what my name was, because I knew they would think I was a screwball. I got more and more nervous, until finally (it took about twenty minutes) my name came to me. I think it had to do with the body being a nuisance. What was going on, what I saw, what I was thinking about, and what I enjoyed seeing and hearing was so much more important.’

This capacity for total absorption, a wellspring of her creative imagination in science, took other forms as well. One of these was music. In college, she took a course in harmony, in which she had to write musical compositions, which the professor would play. “‘How’d you ever think of that?’ he would ask me. Well, I didn’t tell him the reason I thought of that was that I had no other way of thinking–I hadn’t had any experience.” What experience she accumulated in this course stood her in good stead when, in her senior year, she joined a jazz improvisation group playing tenor banjo at local places.

 

In her mid-thirties, Barbara McClintock’s particular scientific style was already well defined and emerging in ever-sharper relief. Its distinctive features were polar in character: its ultimate strength derived from a dialectic between two opposing tendencies. The reader may recall from the previous chapter a characterization of her work by Morgan as ‘highly specialized.’ And, although few would accept Morgan’s description of the cytology of maize genetics as any more narrow a category than the cytology of Drosophila genetics, one aspect of McClintock’s scientific preoccupations may easily have led him to such a description: her focus on the minutest of details. The tenacity with which she hunted down every observable chromosomal modification, the thoroughness and rigor that accompanied her virtuoso technique–all these might lead one to think of the focus of her search as narrow. In fact, what she consistently pursued was nothing less than an understanding of the entire organism.

The word ‘understanding’ and the particular meaning she attributed to it, is the cornerstone of Barbara McClintock’s entire approach to science. For her, the smallest details provided the keys to the larger whole. It was her conviction that the closer her focus, the greater her attention to individual detail, to the unique characteristics of a single plant, of a single kernel, of a single chromosome, the more she could learn about the general principles by which the maize plant as a whole was organized, the better her ‘feeling for the organism.’

She never married or had a serious romantic relationship. She worked most of her life in a lab of her own at Cold Spring Harbor, where she could focus on research without having to teach undergraduates. She figured out fundamental aspects of developmental genetics, including many that would not be fully understood and accepted until the latter decades of her career–and she did nearly all of this between the 1930s and 1960s, with like…plants, x-rays and a solid microscope. She was characterized all of her life as “idiosyncratic,” “difficult,” so smart she had no tolerance for fools; she dealt with anxiety and depression, wore pants back when they were called “knickers” (even though she had to have them specially made), and loved her work more than anything else in the world, really. Her peers considered her one of the foremost minds of their generation.

But at the end of the day, underneath all those accolades, she sounds a lot like me. Take from that what you will.

Barbara is the person on the far right. She’s with four other men (three young, one older) posing for a group photo together. The other three are also biologists/geneticists as well. She’s petite, about a foot shorter than all the men, with short hair like a boy’s, small spectacles, knickerbockers and socks, a white button-up shirt, and a checkered baggy sweater.