Thursday, January 20, 2011

At least I can cuss creatively out your bias

Being an avid facebook junkie, I tend to notice trends among my friends that catch on like wildfire, some more worthwhile than others. A few months ago, there was an "Autism Spectrum Quotient Quiz" of sorts that was proving popular. I took it out of curiosity, and scored rather high, but not without noticing some irksome stereotypes that the quiz made, mostly based on Simon Baron-Cohen's ideas of what constitutes autism. Among the questions, there were gems such as "Do you prefer going to a play, or a museum?" and "Do you enjoy creating things, or are you more scientifically oriented" (paraphrasing, I sadly lack an Eidetic memory)
At first, with that former question, I thought it was inquiring about sensory issues: I certainly would enjoy going to a museum more on a less crowded day simply because there are fewer people, the lighting is more consistent in a museum, and there's less of a chance of loud sound effects such as a fake shotgun crack or applause from the audience, both of which bother my delicate ears. But as the survey went on, I looked back at the succession of questions and realized it had nothing to do with sensory issues (None of the questions I recall did, actually) but was making a judgement call on autistic people's appreciation and application of creativity. I was baffled, and quite frankly, offended, and then spent the remainder of my time on the quiz warning other people who took it that it was slanted and not without cultural bias.
This goes beyond just one goofy facebook quiz though. It feeds into a larger social narrative that autistic people across the spectrum are incapable of creativity and originality, and that our thought processes rely on imitation, but never creation. If I were to make an educated guess at the origins of this dubious assertion, I would trace it to the idea that autistic people learn exclusively through repetition. Since many of us, myself included, are echolaliacs, there is a nugget of truth to this. It appears to have mutated into this idea that learning through repetition is the only type of learning we are capable of, and we have no organic thoughts of our own to cultivate and nurture. I often most see this applied to verbal articulate autistics, and ones with stereotypical savant skills.
The most vivid example of this in my memory is a particularly loathsome Babysitter's Club Very Special Lesson installation called "Kristie and the Secret of Susan". The titular Susan was a nonverbal autistic child with a memory for calendric dates who could play the piano skilfully enough to attract the attention of other children, who would bring recorded music for Susan to play so they could observe (jeeringly) her musical abilities. Kristie noted with a hint of sadness that when a record would skip due to a scratch, Susan would play the scratches, as though the music didn't "matter" to her, she was just repeating the noises.
This was published in 1990, a year after I was born, and the insulting stereotype remains intact. I can still recall people claiming that autistic people were "devoid of creativity", which is why we were more likely to be found in the sciences rather than the humanities-related fields. Others attributed it to our "hyper male brain", not suited for creative or artistic expression.
This is not only a crappy stereotype about autism, it's also a sexist piece of tripe and distorts the beauty and wonder of science. I'm not a scientist myself, but my non-neurotypical partner is getting a masters in Theoretical Astrophysics, and explains the field of choice by indicating the beauty and majesty of the night sky and stars. He is under the guidance of an advisor who models the galaxy with computers. The advisor chose this work out of a desire to better understand God through obtaining a greater understanding of the universe. Every truly passionate scientist I have met has been gifted with a creative spark that allows them to advance in their fields. A big part of science and scientific advances is possessing a creative mind so you can find solutions to problems nobody else can.
We are also discovering, more and more each day, that the gender gap between girls and boys with autism is not as biological as we think. Before, very few people thought to look for differing ways autism may manifest in girls than in boys. The gender gap in autism is eroding with every new discovery about how autism works and presents itself. To drive a further point, Daniel Tammet, an autistic man, has been shown to be just as capable at creative pursuits as he is linguistics and mathematics, writing poetry to honour the natural beauty of Iceland, and possessing excellent writing skills in his two memoirs and blog. He also paints "landscapes" of his synesthesia sight, which are delicate and beautiful in their use of colour. There is nothing inherently "male" about science, and nothing particularly "female" about writing poetry. It was more a matter of institutionalized sexism and prescribed gender expectations which prevented women from gaining recognition in either of these fields in Western society.
Above all else though, there is an ironically, close-minded and decidedly inflexible way that neurotypical society defines "acceptable" creative expression, going back earlier to that point I made about the creativity of science. Painting, poetry, photography, drawing, writing, sculpting, dance, and music are the primary acceptable ways one may express creativity. These art forms are beautiful and I know many autistic friends who are interested and immersed in them. But there are many ways that creativity is expressed by autistic people which goes unnoticed by neurotypical eyes, and is therefore not counted as creativity. I consider some forms of my stimming to be a way of cathartic creative expression myself. On a daily basis, I can feel a tug between the weight of my body and the desire to be feather-light, between the sensory input of everything around me and the desire to be closer to that stimuli and yet escape it for a moment. Stimming helps me unite the desires and sensations, and allows me to feel whole for moments in ways I normally do not. It goes beyond therapeutic repetition for me. It is a territory of exploration and excitement for my body and mind, and in my eyes, it is creative. But I can't share what goes on in my head and body with the people around me when I stim like this. So it is not seen as creative.
Others may have their own secret creativity which can't be perceived by outsiders, like mine. One need not be a masterful artist or delve into musical composition to be considered such. Creativity is a trait shared by all, whether they realize it or not. I'm reminded of a major plot point in Never Let Me Go about creativity and the main characters. Without spoiling, I'll say that it showcased how much neurotypical society values creativity not only for its beauty, but also for how it's perceived as inherently human. Denying autistic people the label of creativity serves to dehumanize them and marginalize their accomplishments and paths of thought. Nothing is as close minded as thinking that your creativity is the only one that can be labelled as such.

A quick random thought about ageism

Last night, I was doing my usual midnight-on-vacation activity of surfing the internet before bed, and came across an amusing cartoon on Alas, A Blog. The comic, which was hilarious, involved Bernie Sanders, someone whom I've grown to admire and whose guts and integrity make me glad he's in politics. I posted it to facebook, with the message, "Love the bit about Bernie Sanders. Like a dear old coot like him would ever pick up anything more deadly than a pie chart."
Two seconds after I posted it, I thought over the word choice I elected: "Coot". I usually thought of it as a loving, endearing term, grandfatherly in a way, admiring. But it occurred to me I had never learned what it actually meant, so I looked it up on the Free Online Dictionary. "Definition: An eccentric or crotchety old person, usually an eccentric old man." I felt a bit uneasy. Eccentricity isn't in and of itself a bad thing, and I don't shy away from labelling myself as eccentric sometimes. But I am also aware that it is used as a coded term for someone who is not quite rational, someone who does not follow reason or common sense. Sanders, a self-described Democratic Socialist, much like myself, is probably frequently a target of such coded language. I can easily imagine his fellow Democrats calling him that in privy, as a way of saying that while his courage is admirable, his ideas and convictions are not to be taken seriously.
I thought of other words used to describe men of a certain age like Sanders, who didn't really fit into the dominant paradigm. Codger: "An elderly man, usually eccentric or old-fashioned". Old goat. Pops. I was reminded of Mike Gravel, whose failed 2008 presidential campaign was marked by many ideas I agreed with which mainstream Democratic candidates shunned subtly: Legalized marijuana use, gay marriage made legal, immediate end to occupation of Iraq and Afghanistan, a lockdown on the sway of the Military Industrial Complex. Gravel was not given the same respect as Bill Richardson, Hillary Clinton, and Barack Obama. The mainstream media treated him like a quaint, harmless old man with amusing ideas who was good fodder for amusing jokes.
With this reflection, I realized how closely disablism is tied to ageism. When you are young, mental disabilities are treated as frightening, unfortunate, and a precursor to violent actions. Elderly individuals however, are given an equally odious treatment: The intellectual validity of their opinions is almost always discarded, and they are treated with amusement and disregard. Even those who are not disabled in any way are treated like their opinions are a product of an imperfected mind, due to their age.
Neurotypicality equates disability with a breakdown of a "healthy" and "whole" mind, and therefore sees disability as an inevitable byproduct of ageing. The fact that it is attributed to "breakdown" is why youthful mental disabilities are tragic in the social narrative as well.
But it has the same root: The idea that disability can be equated with incompetence, stupidity, and lack of common sense. It condescends people with disabilities and those assumed to be disabled in some way, pushing us into the corner. Our language reinforces this by equating being aged with being "odd" or "off-kilter".
Well, time to hunt the dictionary for a more interesting way to refer to older people who give me courage and cause an upsurge of admiration in me.

Friday, January 7, 2011

With my image in my eyes: My story of my body

Trigger Warning For Eating Disorders, Diet Talk, traumatic events related to sexual assault and verbal and physical abuse, and Fat Hatred

Recently on Tumblr, I began following a tumblog called "stophatingyourbody" (link here I've been feeling happy and relieved reading all the stories of young women coming to terms with self esteem and body image issues, declaring their love for their bodies in a world that actively encourages self-criticism and disciplining of women's bodies.
It began working into my brain's gears on how my own body image issues affect me, and as I thought more about the topic, I wondered how my disabilities affected my self-image and outlook on my body and beauty. This post is the result of that. It's not particularly elegant, but it is my story. I feel that it is particularly important because when I googled "autism self image", very little came up on the issue of women's bodily love and how to nurture it.
I've noticed a lot of people, really, people who should know better, think that women and girls with autism don't suffer from the same issues with bodily image issues that neurotypical women and girls do. They think that we are immune to messages from the media, comments whispered about our appearance, and expectations to fulfil a certain measure of feminine beauty.
But autism is not my only disability, and autistic women and girls do not live in a vacuum. Many disabilities intersect, and today I'd like to talk about how, when it comes to body image and beauty, some disabilities of mine aren't all that invisible.
Along with autism, I have Obsessive Compulsive Disorder (OCD) which manifests itself in overlapping ways with my autism: Repetitive, ritualistic behaviour defines much of my daily existence, in little ways which mean the world to me, but go unnoticed by the casual observer. If I were to describe all the little ways my world is different due to my rituals and compulsions, we'd be here all day, so I'll skip it. However, I will not deny that this attention to detail and need for order and symmetry has affected my relationship with my body image and aesthetics related to beauty. More details on that later into this post.
Another disability which makes an impact on my life and outlook is Post Traumatic Stress Disorder (PTSD) which manifested during my teen years due to a combination of things: Childhood physical abuse due to my own father's struggling with his Vietnam War PTSD, several episodes of sexual abuse from several perpetrators throughout my preteen and teen years, and severe emotional abuse coupled with threats of physical abuse by an adult in my life with lots of power over my life. PTSD has probably changed me more than my other disabilities, simply because, unlike OCD and autism, which have been facts of life since I was a child, this is all new to me. Even though it's manifested since I was a teenager, it was only recently that I learned to recognize it for what it was, give it a name, and decide to do something to cope and contend with it. Part of my personally prescribed therapy with dealing with PTSD is to talk about how it's changed me. The sexual assaults in particular altered my body image and how I interacted with people romantically and sexually.
So, in the words of blogger shark-fu: Shall we then?
Autism and OCD mean, at least as far as I can tell, that compared to neurotypical individuals, I have a greater attention to detail and can pick out irregularities in patterns and notice minute things amiss with the naked eye. Before puberty, this meticulous outlook was directed primarily at external forces: The water was too cold, the glass beads had curious streaks in them, or the book's pages didn't add up to a perfect halves when you opened the book to its centre, there were more red berries than blue berries in my bowl of fruit, or my peas are touching the corn.
But after puberty hit, I developed new anxieties about my body, combined with the trauma of losing my father to cancer and experiencing several sexual assaults left me feeling a new hatred for my body. I felt like my body was weak and vulnerable for being assaulted and violated in this manner. I wanted to hide, to become invisible. I didn't want to face my assailants, which proved difficult, as the assaults were something I kept to myself out of fear and confusion.
My method of avoiding those who hurt me took many forms, but they changed my eating habits: One assaulter was a student at my school, so I took to skipping lunch almost entirely, or eating it hastily so I could leave early to avoid him. This meant frequently coming home hungry, and fixing myself a late snack to compensate for the lost meal. One of the others was an adult, a "friend of the family" who frequently did home repairs at my house. To avoid him, I often went out of the house to get ice cream, or fetch some gum or candy at the corner store, or go to McDonald's.
This did more than comfort me while fearfully avoiding contact: It caused the assaults to stop. I grew plump and the tormentors quickly lost interest in me. However, it opened up new problems with my body, because my weight gain (Of about 40 pounds, according to a doctor's note I read later in life) did not go unnoticed by my very image-conscious mother. She was greatly angered by my weight gain, and I can vividly remember her calling me "fat as a pig", bullying me about my food choices, and making mocking "suck suck" noises whenever I drank a glass of milk, calling me a "fatted calf" for my affinity for milk.
This caused a deterioration to my self esteem, and I was plagued by guilt for not living up to my mother's expectations. I began worrying constantly about my size, a topic which I had never given consideration before. This was further aggravated by my classmates at the time, who also noticed my weight gain and were malicious about it, making nasty comments about my body just loud enough for me to overhear.
For the first time in my life, I began seriously contemplating my looks negatively, and obsession began creeping into how I looked at my body. I began putting a thick film of mineral oil on every drink I consumed, which acted as a laxative. I took long walks in the heat while wearing baggy black clothing, which maximized sweating. On these walks I would bring a portable CD player and headphones so that I could distract myself from the sensation of sweat running down my body. I obeyed my mother and watched TV while pedalling an exercise bike. And my picky eating from childhood returned, limiting my diet to blueberries, dill pickles, and lots of iced tea, supplemented with occasional bites of chicken and lots of sprouts soaked in Italian dressing. I also took to giving up my lunch time at school, out of fear of my mother's anger if I ate, and I spent my time pacing the halls instead, counting steps and memorizing the details of tress on campus and trying to remember the Latin and Hawaiian names of the various plant life.
The results are as you might expect: My obsession made the weight come off, but it did not fix my newfound fixation with my body's imperfections. If anything, it amplified them. The comfortable layer of fat which guarded me from unwanted contact was gone, and I felt naked and vulnerable without it, but I was still not yet perfect enough. Also, around that time, I got a boyfriend, my very first. He adored my physical features, but he was extremely judgemental and nasty to me in other areas, meaning that I lost even more weight because I was so fearful of his criticism, and succumbed to stress related starvation. At that point, I went down to about 155, which is far too light for someone of my height and build.
I stopped consuming the laxative mineral oil after a few months, when I noticed there was blood in the toilet. That shocked me enough to get me to lay off of it for good. But my hatred of my body continued in self criticism. However, my mother had let up on the criticism, pleased with my frail new build. Whenever she saw me, she would greet me with a cheerful, "Hey skinny!" meaning to compliment me. She took me clothes shopping, always talking about how pretty and skinny I was. This did not help my self esteem, I instead reeled inside, angry that she was obsessing over my body, feeling naked and triggered, because she was using the same syrupy, simpering language that my adult molester had used towards me. It sickened me, and I felt dizzy and frightened whenever she did diet talk or used the words "pretty", "lovely", "slender", or "skinny" at me. So I lost even more off my body, stressed like never before, feeling constantly violated by her words and my boyfriend's criticism of me.
But it all came to a screeching halt upon my first full on panic attack. I ended up in the hospital, and went on anti-anxiety medication. The medication put some meat on my bones, and beefed up my appetite. I went from consuming olive oil and water with tomatoes to eating full meals again. So I went up from 155 to the 200+ zone, where I remain today at 230. The weight gain however, angered my mother again, and when I came home for the summer, she screamed at me for being so fat, screeching that I was going to die of diabetes, and that I looked disgusting. Her screaming finally cracked something in me, but instead of having a panic attack or a meltdown, I stood up and told her I wasn't going to tolerate her being so awful to me anymore. Since then, her and I don't talk much, and we have a strained relationship. Just thinking about all the awful things she said about me makes me "fizzle" where I have to hit something, and begin shaking violently. In short term, remembering her fat hatred triggers me just as badly as memories of my past molestations do, if not more.
Since then, I have found a new partner who loves my fat body. I have found self confidence in myself and I am able to comfortably engage in sexual activity and be complimented on my body without being triggered. I have discovered Health At Every Size , and Fat Acceptance. I have learned to manage my PTSD, by talking with sympathetic people who believe me (very important, nobody in my family except my sister believed me at first when I told them) and listen to my anxieties. And I have discovered ways to joyfully practice my rituals. They bring calm and peace to me in a world of calamity, and need not be rooted in hate, but in serenity.
Just as fat hatred and talks of diet are inexorably intersecting with my PTSD, anxiety, and frightening triggers, acceptance of my disabilities became tied into acceptance of my body. I consider both to be a part of me, and I do not try to manipulate them to fit the ideal of society. Fat and disability intersect in many ways, and accepting both means an end to suffering needlessly over both. Disabled people who are fat face a double edged sword of disablism and fatphobia, and women and girls with autism are no different. We just as readily absorb hateful ways as neurotypical girls. My hope is that by sharing my story, this truth is realized, and people reconsider how they think about autistic women and girls and how to nurture their self esteem. We need to be encouraged to see ourselves as beautiful just as much as neurotypical girls, lest a distorted image of ugliness creep in.

Monday, January 3, 2011

Oy Vey! Enough already with the NPR and the autism and the fail!

If it weren't for my long-standing crush on Ira Glass (Men with glasses, sorry!) and the fact that I notice a positive correlation between the amount of novels written by modern authors I read with my NPR reader/listenership, I'd probably be fed up already with their reporting on autism and call it quits. A few days ago, I posted on their coverage of Asperger Syndrome in the DSM and the amount of frustrating untruths and generalizations found in the interview. Now, I find myself infuriated at them again today, with an article about autism and oxytocin, titled, "Scientists Test 'trust hormone' for Autism Fight".
The title alone is problematic. Who's fighting autism here? What's there to fight about autism? Are we at war with something or someone? Is there some sort of grand battle here? And if so, can I commission an army of orcs?
I am already familiar with stories on oxytocin being used as a way of improving the behaviour of autistic children. I'm curious to see how it affects people like me, who have issues with intimacy and touching, but not until there's some solid science behind it. Especially for use on children, who may suffer more than an adult from negative side effects of unregulated drug use. It may prove helpful in the future, not a silver bullet that will magically make us neurotypical and cuddly teddy bears.
The way that this article was worded, you would think we were facing a life-or-death situation here. The word "hope" is tossed around like parade candy. It throws in the obligatory reference to a parent's struggle to find a miracle. To NPR's credit though, they point out that the research is not thorough enough to start spraying autistic children full of the stuff, lest there be long term side effects they are not aware of. I was grateful for that, home remedies often cause much suffering for autistic children. Chelation, anyone? The effects were well-described. It may help us improve our facial recognition techniques, and could possibly enable us to be more sociable.
But then, I saw the part of the article that made my eyes bulge out of my skull: Their choice for an interview on the possibilities of oxytocin was the Chief Science Officer of Autism Speaks. No autistic people were interviewed to give their opinion on the use of it. Not even someone from the Autistic Self Advocacy Network, or someone who had tried oxytocin before, or someone with issues the drug could alleviate, not a single one.
Once again, autistic people have been erased from the conversations that affect us most. NPR has decided that our thoughts and feelings on this important issue are not important enough, all things considered, to be included. Instead, they rely on someone from an infamous anti-neurodiversity anti-autism organization which makes money off of characterizing people with autism as objects of pity and autism as a monstrous force of nigh unstoppable evil.
It is unacceptable in the 21st century, the age where we have more visibility now than ever, in the age of Temple Grandin and Donna Williams, that a highly respected news organization relies still on the opinions of outsiders, rather than the disabled individuals themselves. This is way outside the norm of the disability community, and it needs to change. It's almost enough to make me wish that I had, as I originally planned when I started college, gone into journalism. It appears that neurotypical journalists from major organizations don't have much of a clue on how to respectfully report on autism and life with autism.
A long-standing motto/pledge of the disability community has been, "Nothing about us without us", NPR. And this is about us. Not about parents being provided with "hope". We're the ones who will suffer the long term consequences, if any. Why not give us a voice? That gives us more hope than any untested drug will.