How Can I Try?

In response to my recent post that Willpower is Not Enough, one commenter said that she'd thought from the title that it would be about executive dysfunction, since so often people tell a person with executive dysfunction to try harder, or assume their lack of output is deliberate.
But I don't think I'd put it that way. It seems to me that rather than willpower being something separate, that can or can't affect one's executive functions, it's actually something that is determined, at least partially, by executive functioning. Executive functions affect how hard you can try, how much willpower you have, instead of being affected by those things.
So, instead of the phrase 'if you tried hard enough, you could overcome executive dysfunction' being similar in meaning to telling a blind person 'if you tried hard enough, you could stop being blind', it's more like telling a them 'if you could see well enough, you could stop being blind'. In my view, willpower or trying hard isn't something that is always under conscious control. Not for neurotypicals, and especially not for the people described as having executive dysfunction. You can influence it to varying degrees (and this differs from person to person) but you can't fully control it.
Tito Rajarshi Mukhopadyay, in his book The Mind Tree, has a poem in which he asks someone to teach him how to try. That's what executive dysfunction is - difficulty trying, not because you choose not to try or you have some kind of emotional block, but because your frontal lobes can't marshall the rest of your brain in the right way at that time. Amanda Baggs has a good analogy for it: she compares herself to a stork, because storks mostly fly using thermals instead of flying on their own power. As a result, if the thermals aren't going the right way, they will have a hard time reaching certain destinations. What makes it more confusing for someone on the outside is that thermals shift around, so while one day it's much easier to go from points A to B than A to C, it may be the exact opposite the next day.
Other people who have more control over their own output are like geese - power flyers, who mostly flap instead of gliding. They're more consistent. They're slower than a stork using the thermals (and they tire out more easily), but much faster than a stork trying to fly somewhere without the right thermals.
And willpower, or motivation, is a part of that. When properly motivated, we can be pretty close to unstoppable. But we might not be able to become motivated (even if you threaten us) if the circumstances aren't right.

Unusually Good Asthma Doctor

A little while ago, I went to get a new prescription for my asthma medication. While I was talking to the doctor about my prescription, I asked her about how to make sure to take my medication regularly, something I've had doctors get mad at me for not doing even though it's executive dysfunction that makes me go off my medication and I really can't help it (I thought I'd blogged about that before, but all I could find was this).
She didn't give me any advice on that (which is too bad because I have the same problem with antibiotics) but instead she told me that I actually don't need to stay on my asthma medication if I have no symptoms. I thought the daily puffer (Flovent) was a preventative and the one I take during an actual asthma attack (Salbutamol) was a fast-acting symptom relief one. Which is technically true, but it turns out they actually do different things, whereas I thought they did the same thing over different time ranges. Flovent apparently reduces swelling, while Salbutamol stops spasms. Anyway, it turns out if I'm off both medications and breathing just fine, I don't need to take them - even the Flovent - but if I'm having to take the Salbutamol (and therefore, clearly having symptoms) I also need daily Flovent. So my instinct that I kept fighting against to only take my medications when I feel sick is actually right in this case.
What I really like about this doctor is that, unlike every other doctor I've seen for pretty much any physical problem, she treated me like a knowledgable person, who not only needs to know what to do but also needs to know why. Exactly how I'd treat a patient if I became a doctor. I love being treated like I'm capable of understanding things.

Don't Be So Hard On Yourself!

Recently, I read a comment by a deaf woman who complained about people's reactions to her acknowledging that her speech can be hard to understand at times. Almost everyone replies 'Don't be so hard on yourself! Your speech is fine!' or something to that effect.
Thias annoys her, she says, partly because of the assumption that she's 'being hard on herself' by acknowledging a real difficulty she has, and partly because of the assumption that they know better how understandable her speech is. Granted, she can't hear her own speech, but she has a lot of experience with people's reactions to her speech, under different circumstances, which makes it clear to her that though her speech is usually fairly understandable, under adverse circumstances (such as talking to someone who is not very proficient in English) her speech is less understandable than most English speakers.
Recently, I experienced a similar thing. I was talking to the parent of an autistic boy I know and mentioned an idea I had (for a program where older/higher functioning autistics help younger/lower functioning autistics). She told me I should start something like that up, to which I replied that it would be quite difficult for me because of my organizational difficulties. She told me not to be so hard on myself, and that I was very smart - she could tell by how I talked. I tried to explain that in a one-on-one conversation about ideas, my strengths are more evident than my weaknesses, explaining how speech is a real strength for me, but she didn't seem to get it. She still thought I was being hard on myself.
(It's important to note that she's a good friend and a wonderful mother to her autistic son. One thing I admire about her is how she really gets that he's much more intelligent than his test results would suggest. She adamantly insists he is not 'profoundly retarded' as his IQ test scores suggest, something I agree with. His more overt abilities are in concordance with his test scores, but he shows signs of understanding much more than he can express.)
I was kind of disturbed by this. I'm not sure what to do about this. I know I have organizational problems, and acknowledging these has greatly helped me. Thinking that 'smart people can do this' led me to think I must not really be that smart. How can I get her to see that her attempt to reassure and encourage me is actually more likely to hurt me than help me (if I accepted what she said as correct)? She linked organizational skills to intelligence in her statements to me. She did so to help me feel better about my organizational skills, but a more likely result of such a link is for me to feel worse about my intelligence.
[A side note: my Dad just got my brother a ukelele, and the only human family member who hasn't been playing it is my mother. I can do Mary Had a Little Lamb, the riff to Smoke on the Water, and the scales.]

Imagination Deficit?

I found an article recently: Creativity and Imagination in Autism and Asperger Syndrome by Jaime Craig and Simon Baron-Cohen, in the Journal of Autism and Developmental Disorders volume 29, number 4, pages 319-326 (1999).
In this study, they tested creativity by first asking children to add to drawings of two parallel vertical lines, then by asking them to add to more varied simple patterns, then suggest how to improve a toy elephant, and then imagine what an abstract 3D foam object could be. In each, the autistic children did more poorly than controls, and therefore were apparently 'less creative'.
However, I would probably have trouble giving original responses to those questions. And I've partially written several unique fiction stories, such as a tale of a land with humans, vampires and werewolves (which will actually be several books set in different parts of the land that each have their own unique culture), a story about a boy who finds out he has an addictive, progressive and very destructive kind of weather magic, a story about a changeling who is actually a girl merged with a spirit being (their kind always merges with humans in childhood), and a story about a land where people form magical bonds with animals and one girl is among the few who managed to bond a (highly magical) bat, except she actually bonded two bats, which is unheard of and turns out to be because she actually has the 'soul' of a dead person in her, and she meets a mind mage who is pretending to be a vampire due to weird psychological problems involving massive denial. So am I less creative than normal people? Clearly not.
I find it hard to be creative on demand, which is partly why those tests would be difficult. Most of those story ideas are idle thoughts I had at random times. Some are dreams, some are from books I read or stories I've heard, some are from pondering 'what if such-and-such'. Each of these ideas, by itself, is not enough for a real story, but gradually they fit themselves together in my mind until they are a story. The story, to a large part, invents itself. Once it has taken enough shape, I can start working with it, using logical reasoning and research and trying to figure out what 'feels right', but the process cannot be forced. I can't make up a story out of thin air. The story makes itself.
In addition, I have trouble mentally erasing things. If I'm looking at a blank page, trying to decide to draw something, I find it hard to mentally erase the white and cover it with color. The same problem would occur with the elephant and possibly the foam objects - I can't erase what they actually look like. But if I look away, with some effort I can dredge up something. And with the foam things, chances are if I needed a certain object for a pretend game some of the foam objects would start seeming like that thing I needed.
In general, I don't think autistics have a deficit in imagination. We're just different. Perhaps odd executive functions play a big part in poor performance on tests of imagination, because of difficulty mentally erasing or calling up ideas on command, which can certainly be present in an imaginative person.

personality test results

A lot of personality tests don't describe me accurately. I came across the similarminds.com website and decided to take some of them.
Here's one:

Factor		low score	high score
Gregariousness	46%	quiet, reclusive	engaging, socially bold
Sociability	58%	withdrawn, hidden	warm, open, inviting
Assertiveness	30%	timid, gunshy	controlling, aggressive
Poise	42%	uneasy around others	socially comfortable
Leadership	30%	stays in background	prefers to lead
Provocativeness	38%	modest, plays it safe	bold, uninhibited, cocky
Self-Disclosure	42%	private, contained	very open and revealing
Talkativeness	42%	quiet, stealthy, invisible	motor mouth, loud
Group Attachment	26%	loves solitude	prefers to be with others
Understanding	58%	insensitive, schizoid	respectful, sympathetic
Warmth	42%	disinterested in others	supportive, helpful
Morality	42%	break/ignore the rules	play by the rules
Pleasantness	42%	aloof or disagreeable	gets along with others
Empathy	46%	out of tune w/ others	in tune with others
Cooperation	82%	competitive, warlike	agreeable, peaceful
Sympathy	70%	socially inconsiderate	socially conscious
Tenderness	34%	cold hearted, selfish	warm hearted, selfless
Nurturance	34%	self pleasing, me first	people pleasing, me last
Conscientiousness	46%	reckless, unscheduled	careful, planner
Efficiency	26%	unreliable, lazy	finisher, follows through
Dutifulness	30%	leisurely, derelict	strict, rule abiding
Purposefulness	30%	inattentive, undisciplined	prepared, focused
Organization	58%	relaxed, oblivious	detail oriented, anal
Cautiousness	42%	impulsive, spendthrift	restrained, cautious
Rationality	70%	irrational, random	direct, logical
Perfectionism	42%	careless, error prone	detail obsessed
Planning	34%	disorganized, random	scheduled, clean
Stability	18%	easily frustrated	calm, cool, unphased
Happiness	38%	unhappy, dissatisfied	self content, positive
Calmness	30%	touchy, volatile	even tempered, tolerant
Moderation	50%	needs instant gratification	easily delays gratification
Toughness	26%	hypersensitive, moody	thick skinned
Impulse Control	46%	lacks self control	maintains composure
Imperturbability	26%	highly emotional	emotionally contained
Cool-headedness	70%	demanding, controlling	accommodating
Tranquility	26%	emotionally volatile	emotionally neutral
Intellect	90%	instinctive, non-analytical	intellectual, analytical
Ingenuity	78%	lacks new ideas	innovative, novel
Reflection	74%	unreflective, coarse	art and beauty lover
Competence	78%	slow to understand/think	intellectual, brainy
Quickness	90%	intellectually dependent	intellectually independent
Introspection	82%	not self reflective	self searching
Creativity	86%	dull headed	synthesizer, iconoclast
Imagination	66%	practical, realistic	dreamer, unrealistic
Depth	78%	lacks curiosity	mental explorer

Here's what I think was inaccurate:
Gregariouasness - I'm not extroverted or shy & reclusive, but I'm not in between either. There are, in my opinion, two types of introversion: a) low-level interacter and b) short-burst interacter. They are using a scale with the first type of introversion contrasted with extroversion. I'm the second type of introvert. I talk a lot and interact a lot when I'm around others, but have a strong need for non-interacting time. So basically my behavior alternates between extreme introvert and fairly extroverted, rarely in between. In my case it's probably because of the on/off nature of many things I do being extended to socializing.
Assertiveness - I have no idea why they think I'm not assertive. It seems like they're confusion cautiousness, assertiveness and need to control others, three separate traits. I'm very assertive, cautious, and not very interested in controlling others (except for my brother sometimes, when I'm overwhelmed).
Leadership - They seem to assume that since I'm not concerned with leading others, I stay in the background. Once again, they are ignoring the third pattern. There are not only leaders and followers, but also non-conformists.
Provocativeness - I don't try to cause trouble for the sake of trouble, but I don't try to avoid conflict either. I base my actions towards others mainly on whether I think it's the right thing to do, not on how they'll react.
Self-Disclosure - For some reason, it says I'm not high on this, even though I've been known to tell people I've just met that I'm autistic, a sexual abuse survivor, or both. Not sure why. Their definition of high self-disclosure sounds like it fits me. Perhaps me and the test had different ideas about what some question meant (kind of like the question "I talk too much". I said it was definately not true of me, because I'm fine with talking a lot, but they probably interpreted that as me not being talkative).
Cooperative - It scores me as high on this. I'm not competitive or warlike, but neither am I "agreeable and peaceful". It seems to be looking on a scale from highly competitive to highly cooperative, and I'm highly independent instead.
Tenderness - Why did it rate that low? I am very caring about the suffering of others. I try to calm my rat Anja down when she's scared by moving little letting her hide, being quiet and not making her the center of attention. Maybe they overgeneralized from my tendency to have little sympathy for people who think you should avoid telling them what you really believe in order to spare their feelings. This test is probably very inaccurate for most activists, because activism is usually a combination of being very empathetic and fighting for what you believe in.
Nurturance - Also inaccurate. I don't put myself ahead of others or others ahead of myself, but they took my saying it was "very innacurate" to describe myself as putting others ahead of myself to mean I put myself ahead of others. I believe I'm no better or worse than anyone else, although how I feel about my worth varies widely.
Efficiency - Why do they equate unreliable and lazy? Those are not the same. Lazy is one end of the extreme, unreliable represents variability. A person who is truly unreliable is lazy sometimes and very hard-working other times, like myself. In my case, it's because of differences in executive functions, the cognitive functions involved in planning and regulating thinking and activity.
Dutifulness - They have the same innacurate assumption I've described so often - considering two traits opposite and thinking everyone can be put on a spectrum of those traits when actually some people are different. I'm not leisurely, derelict, strict or rule-abiding. I think up my own rules to follow rather than automatically following society's rules. I think about whether the rules are correct, and only follow good rules.
Perfectionism - Yet another case of ignoring the third option. The book Strong-Willed Child or Dreamer describes my kind of perfectionism well. That is perfectionism that, rather than being characterized by focusing on details and doing it over again until it's perfect, assumes that either it will be perfect first try or I'll never be good at it and might as well give up now.
On the other hand, this test managed to pick up on my mood swings, creativity and 'need for cognition' alright. Of course, those are areas in which the standard way of having those traits isn't that far different from me.

Different Ways of Going About Things

Diary of a Goldfish is hosting the 4th Disability Blog Carnival. I don't really know what a Disability Blog Carnival is, but from what I understand, the topic is 'different ways of going about things'. That's a topic I think I can write about now. I'll write about homeschooling, and the unusual kind of education I'm getting, which is so much better suited to me than school.
In school, you are expected to learn a certain way, a way that is not how I learn. The things that were really hard for me were: being with nasty kids all day, not showing my work in math because I a) was doing different steps and b) hate to write (typing is fine, but writing on paper too much tires my hand out so I minimise what I write), having to switch subjects so often and especially having others dictate to me what I had to learn.
I'm now homeschooled. This is suited to me because I learn best alone or with people I like, doing things in whatever way works best for my mind instead of following strict steps, obsessing on one thing until I feel it's time to move on and choosing my own things to learn. I can only motivate myself to put out the effort to learn something if it interests me. If it doesn't interest me, all that happens is that I get frustrated, annoyed and bored.
There are some problems with homeschooling for me right now. That is that since I'm not following any curriculum, people can't do what they seem to enjoy doing - look at my credentials and get a rough idea of what I know. If you know what medical students are taught, and you meet a medical student who knows what Flourescence in Situ Hybridization is (a test to make certain 'marker' genes light up), you know they will probably also know a pile of other stuff taught before or around the same time as that. Since I learnt about FISH by researching Angelman Syndrome in my free time, it came along with other knowledge, not the stuff taught in medical school.
In terms of math, I teach myself math formulas when I need them. I figured out by myself how to determine percentages, and do it by 100/n*x. That's also how I determine IQs, not the ma/ca * 100 you see in psychology textbooks (I like to buy used psychology textbooks to read for fun) but 100/ca * ma.
There is no problem for me right now. The potential problems are in the future. I'll try to get into college, but if they don't accept me or they do but I can't fit with the system, I'll do what I want to do with my life other ways. I'm working on a behavior survey into Kabuki Syndrome which I'll submit to a medical journal when it's done. You don't need a medical degree to publish in journals, you just need to produce work that is of good enough quality.
I'm also writing books. You don't need any credentials to write books. I'm writing fiction as well as a book for parents of kids with chromosome anomalies (and anyone else who wants to know more). Lately I've been researching bats a lot, an old obsession revived so I can write about part-bat, part-human people in a story I'm working on. I'm also thinking of getting jobs such as babysitting disabled people, or maybe working in a petstore.
Had my parents clung to the idea that there's only one way to get an education, I'd be much worse off now. The emotional cost of being in school was too much for me. I might evn have commited suicide - I know I considered it. So it could be literally true to say that by homeschooling me, my parents saved my life.
Ettina
PS: I sound less mature in this one than I usually do. I don't know why. My writing style sometimes spontaneously changes. Sometimes it's clearly because of what I've been reading, like when I'm writing like a doctor after reading a medical journal, but other times I don't know where the change comes from.