Strength of Purpose: Two black women standing for rights

 

WE MUST CREATE CHANGE

I was going to call this my “Hope For 2015”, but that is so passive and useless. Anybody can – and lots of people do – post warm, fuzzy notes with Hopes for the New Year, and others click and share. Lovely.

But this is NOT all warm & fuzzy. It’s literally dead serious (with many murdered throughout the year), and quite often blunt, because I am blunt at times. It’s also a call to a change of perspective for some of you.

Deal. Think about it. I’m not a lone voice. Click and share.

MY CALL TO ACTION IS FOR YOU TO READ THIS THROUGH, THINK, AND SPEAK UP. ALL YEAR LONG.

And the next year and the next.

This isn’t about some stranger, or Those Other People, or “That Kind”.

Children with disabilities or other differences are not diseased or broken. The same is true for adults. Yes, those “poor, little disabled children” grow up into disabled adults. Gee, so where’s the concern now? It sure isn’t at work; in the U.S. general unemployment is at 5.3%, but for disabled adults it’s twice that at 10.8%.

Nor are autistic or ADHD children some kind of modern mystery; millions of such adults have been around for decades, just unrecognized for lack of diagnostics. Most of us are profoundly relieved to find out Why. We still have to deal with the details, but that’s easier when you know that not all your difficulties are from some kind of moral failing, or from a lack of trying (and trying, and trying).

WHAT, YOU NEVER HAD KIDS LIKE “THAT KIND” IN YOUR CLASSES? YOU KNOW WHY?

Some were kept at home, because until passage of the IDEA in 1975, US law did not require public schools to teach everyone.

Some were warehoused in institutions, badly treated, undiagnosed or misdiagnosed, and oft uneducated.

But many of us were there; how we struggled through school and life, without accommodations or understanding, and often the target of bullying by peers and even school officials.

Untold numbers of women and men just knew themselves inexplicably “a bit odd”, and did best they could; some succeeding, others not so well.

At worst are those who not only lacked resources, but were shunned by society’s classism, ableism, racism and sexism, and (if still alive) are found among the imprisoned, derelicts, addicts, abused and enslaved populations.

YOUR CHILDREN AND EVEN COLLEGE STUDENTS WILL LEARN DIFFERENTLY, SO YOU MUST ADJUST

We are neither inherently stupid nor incapable of learning. Learning differently means teaching differently. Find what works. Everyone has limits, but a consistent lack of success means you should use another method, as well as more time. Sometimes the learning is highly irregular in pace. Tie learning to interests to motivate your children and students.

Also, be aware that sometimes the “simple basics” may be entirely bypassed by some students who leap to master higher concepts, albeit often forever struggling with those seemingly “simple basics”. People are humans, not robots. Learning is not always linear.

COMMUNICATION IS NOT JUST SPEAKING

Never assume that just because someone is nonverbal they cannot communicate. If you’re not getting their messages, then *you* are doing something wrong. Nor should you assume that because someone is nonverbal that they cannot understand what people say (though the processing may sometimes be delayed). Nor assume that because someone has been nonverbal for years that they’ll never speak. And damn, will you get an earful.

INCONSISTENCY IN DAY-TO-DAY ABILITIES IS FRUSTRATING FOR ALL, AND NOT A CHOICE

Importantly, just because someone is able to speak or do a task one day, that does not guarantee consistent results. It’s the nature of disabilities — regardless whether considered mental or physical – all involve the brain. Brains are funny things, and many of us have a few buggy Beta-version programs in our wetware. It’s frustrating as hell for all involved.

But don’t assume the “could-then-can’t-now” is intentional. “Oh, he can hear me when he wants.” “Well, you could solve those equations just fine yesterday.” I can guarantee that after a lifetime of such, ridiculing people and punishing them for things they cannot help only increases performance stress.

While that stress might increase focus from sheer terror, it often squelches overall functioning. (Do you want me to listen to you, or try to recall yesterday’s process, or slowly figure it out on my own? I can only do one — if my stomach will stay down.)

TRAMPLE THE TROPES

Ignore the media tropes and centuries of religious hype: disabled people are neither inherently amoral, soulless and evil, nor are they infinitely happy, friendly and angelic. People are people. A few will be nasty bits, some will be profoundly good sorts, and the rest are just ordinary folks who get mad, sad and glad, who screw things up sometimes, and who will also serve others selflessly despite bearing more abuse than anyone should.

We are definitely not incomprehensible, incomplete, little autism-puzzle-pieces, unloving, unlovable, or uncaring.

We are whole people with all the same cares, needs and wants as all humans. Beware — disability happens to anyone at any time. We aren’t a Them, and YOU can be among the world’s 15% in just one day. We are all Us.

STOP “TEACHING TOLERANCE”

Because tolerance means putting up with something one doesn’t really like, or that doesn’t really belong. We want full-fledged ACCEPTANCE.

Nor should we only be acceptable if we can somehow “overcome” our differences enough to pass for Normal Real People. Trying to “pass” all the time is exhausting, and invariably breaks down, oft resulting in the [supposed] Normal Real People assuming that one is lazy, stupid, crazy, all the above, or worse.

Training children for hours a day how to artificially perform “acting normal” does not serve to help them learn how to function best in the world. Yes, of course teach good manners, social and work skills. But suppressing every twitch of one’s natural being adds to stress, making everything else yet more difficult. This is especially when performing like a “normal person” means not doing the harmless things that reduce stresses.

STOP THE BLAME

I must call out the terrifying, unaddressed assumption which underlies so much daily trauma: “The reason the disabled [children] are targeted by bullies is because they are perceived as being weird”. Despite the pervasiveness of this social theme in society, most people are functionally unaware of it, all the while instilling in their Normal People children the same message. Normal People children need to act normal, and not act like That Kind. After all, that’s how the Normal People know the others are That Kind, who’s Us and who’s Them.

But it’s the disabled and different who are taught, over-and-over-and-over that not only is it their fault for behaving or looking weird, BUT ALSO if they weren’t so weird, well then they wouldn’t be bullied. “Quit being so weird! Just say No! Just say Stop.”

Just say BULLSHIT. Because this is blaming the victim. The problem is not that everyone isn’t the same, the problem is that there are bullies.

Even worse, blaming the targets actually empowers the bullies, because the social story says it’s the victim is the one who is acting wrong, so it’s not really the bully who is to blame.

Let’s just top off all that existing anxiety and depression with the trauma of trying to seek justice, but being told again that, “Well it’s your fault, you know. Attracting attention by being weird, and bugging people. You need to quit making trouble now. You already take up too much of our time with all of your “special” needs. Quit whining and go deal with it. — But no fighting, because we’ll know it was you who started it.”

By the way, it’s not “just a kids at school” thing that everyone will “grown out of”. It continues on through college, and happens at work, too.

YOU CAN’T WALK IN THE LITTLE BOY’S SHOES;

THEY’RE FLOATING DOWN-RIVER

It is NEVER acceptable to murder disabled children. Nor should these repeated, horrifying events be considered “understandable” or “excusable”, with the murderers being pardoned just because their son or daughter had a disability.

Increasingly more prevalent in social media, the crime becomes insidiously deemed more and more acceptable. Murderers re-cast themselves as martyrs, acquiring champions to their cause. Throughout repeated blog posts and news stories, they bemoan how taking care of disabled children is just too unbearable, they had to take care of them every day of the week, there was never any relief or help. (Even though there was.) Cue the groupies’ hand-wringing and protests upon the villains’ behalf: “Oh but won’t you walk in their shoes, how they’ve given up their lives, this wasn’t at all what they wanted.”

For in true sociopathic fashion, the poor, long-suffering parents revel in the attention, announcing to the world – sometimes ahead of time — what they have done, and all the while describing themselves as the victims. The dead children (young or adult) are unwanted, and deemed unwantable, less than human just because they couldn’t speak, or needed medical treatments, or used a power chair, or didn’t play with their toys the “right way”, or wore adult diapers … No one would want to live like that; the thing’s better off dead. And what of the groupies? Well, where do you think people get such terrible ideas that it’s okay to kill one’s own children?

ENOUGH WITH THE “DISABILITY INSPIRATION PORN”.

Quit using those heart-tugging videos, walk-a-thons, telethons, and other grand-society functions to win your supposed Cosmic Brownie Points for giving us your pity. Please stop dumping upon us the largesse of your unwanted rags (so Victorian, so passé), or creating useless functions requiring us to serve as targets of unwanted helpful-helper-helpiness for your ego-boo.

Get disabled people out of “sheltered workshops”. Yes, people need work they are suited to. But the segregation and token sweatshop “wages” are an embarrassment and humiliation to all.

YES, CHILDREN GROW UP.

YEP, STILL DISABLED, BUT NOW ADULTS

Do not assume your children will remain permanently childish and incapable — they mature on their own timelines. Allow adults to be adults. Support their needs and interests, but neither dress them like children, nor expect them to live their lives in naïve pre-puberty stasis, without adult desires for socializing with adult peers, life-long learning, mastering skills for some kind of job (even if that job is “just socially productive work” rather than traditional work), and yes, having a love life, however that may be expressed.

YES, PEOPLE ALSO NEED ACCOMMODATIONS;

THAT DOESN’T MEAN “CURE”

Most disabled or different people are not looking for cures to magically change them into someone else, some kind of fantasy Normal Real person that their families wanted instead. Our differences may result from physical events, by random mutation, and / or genetics. Your genetics. We are family. I’m Me, and I like being Me. If you somehow changed all the differences in my brain, I wouldn’t be Me anymore, with all my quirks and abilities.

Of course it will be great to find a means for preventing migraines, epilepsy, fatal medical conditions, et cetera. But it’s also a sad fact that some people have been so convinced of their undesirability as disabled human beings that they can only see “cure” as a means to being an acceptable Normal Real Person. (Worst of all, some people commit suicide because they’ve been taught to hate themselves, as useless and unwanted.)

But what’s really alarming is all the fund-raising, talk, research, and work going on today to eliminate entire kinds of peoples. I’m talking about the thousands of selfish individuals and sociopaths who believe that anyone with neurological or morphological differences should not exist at all, because That Kind takes up too much time, money, and resources.

That’s not “looking for a cure” – that’s eugenics and euthanasia, the same ideas that led to the Nazi Aktion T4 program and other horrors. (In my youth, the state hospital was still in the regular habit of sterilizing people. Had I been institutionalized, I might well not have had my lovely children and grandchildren.)

Yes, we want assistance, we want things that help us achieve what we want in life. Getting the things one needs to learn effectively, to move about, attend to their own needs, to work, to play, to be a part of the community, to have lovers or families. These things should not be seen as extraordinary, special, absurd, or a waste of money, just because they aren’t the same kinds of things used by other people. 15% of the people in the world have disabilities. That is a lot of humanity, and many are uneducated, abused, neglected, avoided, or shut away, depriving the world of incredible amounts of untapped abilities and talents.

CALL OUT BULLSHIT. REQUIRE ACCOMMODATIONS. DEMAND ACCEPTANCE.

MAKE IT SO.

Being remote / mis-emoting

“What’s the matter?”
“Nothing.”
“No, tell me.”
Nothing.
“Seriously, what’s wrong?”
“NOTHING’S wrong; I’m just working on this article.”
“Well you don’t have to be so rude.”
“I wasn’t — I’m just trying to work already.”

Apparently I don’t always “emote” (physically express my emotional state) the way people expect me to. Apparently my “thinking” face looks like a scowl.

“Are you annoyed with me?”
“No.  You’re fine.  I’m just thinking.”

(But if you keep bugging about why I am/not annoyed, I will probably become annoyed…)

Maybe I should research Read the rest of this entry »

Welcome to the first ring of Hell

I’m going to send in a couple of job applications for biology teaching positions at community colleges. With some 200 credit hours of college education, I’ve been exposed to enough teachers to know that I teach better than some of them. I’ve had a course in college teaching, over a decade of teaching continuing education (designing my own courses, content, handouts & my own photography), and have been tutoring biology for several years.

But of course I’ve not actually applied for such a job before. So here I am re-doing my teaching philosophy, checking over my resume, chewing over application letter drafts and whatnot.

Like everyone, I’m really nervous about the prospect of interviews. Unlike a lot of people, I have particular difficulties with interviews, such as the prosopagnosia. This means not recognising people from one day to the next, at least not until I’ve been around them a while. I hate it when people drag you around a building and introduce you to a gazillion people. I can barely mentally file away some vague identification characteristics for one interviewer, and even then I never know which details will prove to be the useful ones for recognising them in the future. Yes, I know … I spend an hour talking with someone, and then (aside from the name on the business card) I truly can’t remember who the hell they were the next day. It’s awful.

During the actual interview process, I’m running mental circles around the auditory processing difficulties, fidgety-scatterbrained ADHD issues, unconsciously suppressing little motor tics (I shouldn’t have to theoretically, but it’s ingrained habit under such situations), concentrating on trying to make “enough” eye contact (whatever the hell that is), concentrating on speaking clearly and avoiding stuttering, ignoring the tinnitus and joint aches (and hoping against migraine). And being nervous is bad enough without those damn menopausal hot flashes!

Of course all that detracts from the amount of energy available for composing brilliant answers. So my usual interview plan is to anticipate interview questions and then prepare and practice answers. I spend days ruminating over and practicing my short “scripts” while in the car. Fortunately, I can never remember my answers verbatim, so they don’t come off as sounding “canned”.

Unfortunately, for all I have a large vocabulary and am a well-practiced writer, I’m less able to produce clear, concise answers to unexpected questions. It’s not that I can’t think of what to say, but rather that all the details of things come to mind at once, and I can’t prioritise and sequence them easily, nor compose paragraphs and then remember them all the way through.

So … anyone out there have specific tips for teaching interviews? (I’m good on basic interview stuff like professional wardrobe.) But this is a new kind of interview situation, and I don’t know what sorts of questions are likely to be asked, nor what sorts of unspoken conventions are typical for such a process, or what committees look for.

“Smile!”

I went in to get my driver’s license renewed. Part of that ended up getting my name entered correctly into the system; convolutions on my name seem to follow me everywhere! And of course, there’s always the ordeal of smiling for the photograph. This involves a story in two parts.

No one looks good in their identification photos, or at least that’s the impression I get from hearing people’s comments. They complain that the picture “doesn’t look like” them. Sometimes people feel compelled to pull out their new license or employer ID tag or school ID card and show it to me, which leads me to shake my head sympathetically and say something blandly supportive, like, “Yeah, what can you do!”

Truth be told, I can’t really recognise people from their ID pictures. I don’t even think that the pictures look necessarily lousy, aside from obvious annoyances like having a “bad hair day”, crooked clothing, or less-than-steller compositional framing. True, identification photos always have that flat, full-front angle that removes distinctive profiles, and the artificial lighting saps the natural color from most everyone’s skin tones. I’m sure those are some of the reasons why people don’t like their ID photos.

But one part that I’m missing is the, Read the rest of this entry »

“For no reason”

(Coffee-spew warning)

“I don’t know; he just started biting the other kid for no reason. But you know, children-with-autism just do those things.”

“We were just going over the lesson when alla-sudden she just BLEW UP for no reason, and started cussing and calling me an F-ing B and threw her folder papers all over and stormed out of the room!”

“I don’t know what’s wrong with this kid. He’ll just pitch an absolute FIT. We tried to restrain him but then he starting kicking the para and screaming and banging his head on the floor. Honestly, he does. It’s awful, believe me. He’s just uncontrollable — if you want, we can set him off and you’ll see what I mean!”

These are re-created quotes, not verbatim from documentation. But I’m sure you get the idea. (The behavior specialist was naturally horrified Read the rest of this entry »

Learning Nothing

“I don’t know what to do with my son. You don’t understand what it’s like. He CAN’T LEARN. He’s been in school for FIVE YEARS and has learned NOTHING! I’ve been to all these meetings. It took him MONTHS of therapy to teach him how to sit down! He’ll NEVER be able to talk. He’s severe.”

This is a made-up letter. It’s a highly shortened version of letters I’ve seen a number of parents post on various discussion boards. It’s alarming on several fronts: the parent is stressed beyond their limits, and is of the belief that their son has not learned anything and cannot learn anything, and not surprisingly, has all but given up on the school he’s been attending, and also that because the child cannot [reliably] speak at this age that they will never speak or never be able to communicate by other means. The parent is certain that the child is DOOMED and will never mature into a capable, happy adult. (The grammatical and attributive errors of “he’s severe” also make my brain hurt, but that’s another issue.)

Judging by the complaints of parents who blog about their frustrations with schools or with their children, there is no lack of bad pedagogical examples.

You try something. It doesn’t work. You tweak it, and persist at employing Instructional Method X for a semester. For an entire year. New IEP, with a few tweaks, new room, different teacher. Still pretty much a variation upon Method X for another semester and another year, because X is the method that the teachers learned when they went to teaching college, and the tweaks were what the SpEd specialist learned from when they went to teaching college, picked up at a seminar, and heard from another SpEd specialist that worked on another kid who was also diagnosed with “A”. By all accounts, it should work.

Let’s work on that some more. Read the rest of this entry »

Social Captioning

Hubby & I were taking a walk down the neighborhood park pathway. After several “hundred-year-advent floods” that happened within the same decade, the diverse planning committees finally realised that the streamway areas will flood and that it’s easier to work with nature, therefore, they shouldn’t allow building permits in these zones. Instead, they created public use areas that can more-or-less withstand periodic flooding, turning them into neighborhood parks with extensive pathways connecting them like green arteries snaking across the county. The pathway is tarmacked, following the winding curves of the steam, and nicely shaded. Bicyclists, rollerbladers, pedestrians, children seeking adventure, and dog-walkers all use these trails.

Shade also means increased cover, so what one gains in relief from sun exposure one loses in breezes to cool the skin and disperse personal clouds of gnats. I keep forgetting how this obnoxious part of summer affects me personally. Unless most people, I don’t quite have that marching gait where I swing my arms when walking, but am more inclined to hold my free hand(s) near my chest. This means that the insides of my elbows get obnoxiously sweaty and uncomfortably sticky because the tee shirt sleeves don’t reach that far (perhaps I need to apply a couple extra dabs of antiperspirant). On the other hand, it’s easier to reach over and gently nab my husband’s elbow and pull him close to me, which I do a number of times.

The first time, he protests, “I’m on the right side of the middle!” Indeed, he is more capable of walking in a straight line than I am. Every now and then I trip over my feet, running into curbs or wobbling onto turf.

“On your left!” announces an approaching bicyclist behind us. Read the rest of this entry »

Slices (Episode 1)

The best definition of “poetry” I’ve ever encountered is, “Poetry is life condensed”. In a similar way, cartoons condense a slice of life into just a few panels.

All four of these reflect different aspects of dealing with the social world, from blocking off unwanted interaction to the absurdity of Read the rest of this entry »

Plaint of the Aspie

Standing alone and unmoved,
The crowd swarms around me.
Don’t stare at me; I can’t stare at you.
I hear the words but miss the message;
Your silent meanings mock me.
Stumbling over the social graces,
Trying to remember the nameless faces.
Speaking my native tongue in accent;
Missing jokes, clobbered by punchlines.

 

Are not my tears and blood salt of this earth?

 

I tried so hard, failing ever and again.
Tried to bang out of my head
The taunts that carved up my heart.
But in the end, nothing ever changed.
Too many signs and labels
Swarm about me in multiplicity.
You think they create reality;
Drawing lines is how you define
Who you are and what is real.

 

We are deemed aliens, and yet your brethren.

 

Do not discount the misunderstood.
See! We are making re-visions,
Re-ordering disorder with grace.
Thinking outside the narrow boxes
We could never fit into anyway.
For I will resist when they insist
That only average is normal;
And I will refuse when they accuse
That different is defective!

It’s Not Easy Being Variegated

Alpinia zerumbet ‘Variegata’

 

“Why is she doing that – stop it! You’d better stop it right now or else!”

If I had a dollar for every time my mother had told me, “I don’t know why you’d want to do that,” I could buy a plane ticket to Helsinki. Mind you, she never asked why I wanted to do whatever the particular “that” was at the time. If it wasn’t important to her, then it wasn’t important at all. (This is so selfish and one-sided it slides into the realm of the pathological.)

All behaviour provides some kind of communicated message. The onus of burden on communication does not belong to either the autistic or to the people interacting with them. Rather, it belongs to both. Communication is a result. It takes two to tango, sender and receiver each way. Communication can happen in many ways. But unless both parties can find a way to share the message, and are willing to try, it won’t happen.

To make communication happen, we must be able to think outside of the usual verbal box. We have to really observe what is going on, and figure out why someone is doing what they are doing. A lot of people seem to have difficulty understanding the concept of cause and effect – they want to react to the effects, rather than figuring out the causes. It’s easier that way, I suppose; it doesn’t require any thinking.

Let me tell you a garden story as an analogy. In entomology we have a concept called the “pesticide treadmill,” where people find it easier to either spray pesticides on a calendar basis, rather than assessing the actual need for such and what is causing problems, or they wait until problems reach catastrophic levels and then spray. Both of these approaches are both a waste of time and money. Regularly scheduled “calendar spraying” increases pollution, and only pushes for greater pesticide resistance in the pest populations. Not surprisingly, waiting until the pest population blows out of proportion does not yield effective results either, either in terms of pest control or in benefit to the crop.

Sometimes people go around spraying insecticides on their plants, when what they really have is a fungus problem, or a nutrient problem, or an insufficiency of light. Amazingly, the insecticide doesn’t solve the problem! So, they keep on spraying … why? Because the first dose didn’t work. So they think they need more doses, and it should work if you keep giving enough doses. Hmn…

In much the same manner, some people want to do the equivalent thing with their clients or family members — treat symptoms with treatments, instead of figuring out what is causing the problem. Give them tranquilisers, or neuroleptics, or megadoses of vitamins, or chelation, whatever — some “treatments” are far worse than others, but it’s still trying to treat the symptoms rather than figuring out what is causing difficulty. (Amazingly, more doses don’t solve the problem!)

Or indeed, sometimes it’s easier to give “treatments” than to determine if there truly is a difficulty – not all different behaviours are problem behaviours.

“Help!” says a gardening class student, “my plant has yellow leaves! What’s wrong with it? Does it have bugs? Should I give it some Miracle Grower drops?”

“Um, ma’am, this is a variegated ginger. It has green and gold leaves. That’s the way it grows. It’s okay – it’s supposed to be like that.” Student looks dubious. “Your plant is just fine. Really. Enjoy it. There’s nothing wrong with it – it’s naturally variegated from its genes, and that’s what makes it different.”

Student still looks dubious, and says, “I don’t know … it looks sick to me. It’s just too weird – I want my plants to all look nice and green.”

“If you don’t like it, then take it to the office, or to church, or whatever. There are plenty of people who love special plants like this.”

But it takes extra time and effort to observe, monitor, and assess your plants for pest problems. A good IPM (Integrated Pest Management) program will save money in both reduced applications of pesticides, and increased value of your plants. But all this takes learning, observing, and thinking. Likewise, it takes learning, observing, and thinking to analyse the functional cause and effect of various behaviours.

Too often the child (or even adult) is perceived as being a problem, rather than as having a problem. Instead of figuring out what is causing the problem, the reaction is focused upon the effect that is the child’s behaviour. This has to be stopped right now; the child is being bad, children should not talk back, and children should not win arguments! (There’s a recipe for disaster; simply give orders without listening to others and taking their concerns seriously.)

Punishing the child for misbehaving should stop the behaviour, right? Possibly. Unless the child perceives that the punishment (such as an out-of-school suspension) is better than the problem that is distressing them (being bullied). Punishment can sometimes stop a behaviour (depending upon what’s going on), but it doesn’t often change the behaviour because it does not teach a person what to do instead. As long as the behaviour gains something for the person, it won’t go away. That “something” doesn’t always have to be an optimal result, merely a less-bad result. In other words, the behaviour serves some kind of function. When we’re untangling the problem, determining what that function is will be very important, because that’s the key to figuring out what is needed in the way of determining the true problem and a better solution.

 

 

Failing to Cheat

My fourth-grade teacher Miss V is standing at the front of the classroom, writing something on the board and announcing the next assignment to the class. I am bobbing and straining to see around the four ranks of students in front of me, watching her gracefully stroking the chalk along the board to produce words in her perfect penmanship. The capitals swirl impressively, and her near-lack of spacing turns the words into ribbons of elegant loops and curls. I blink at it several times, and my focus finally shifts; pop! the calligraphy resolves into the vocabulary words “Huron” and “Michigan”.

I realise that today’s social studies lesson must be about geography, and we are studying the Great Lakes. I bet she’ll ask who remembers all of them, so I am mentally scrambling to remember all five lakes; there are always one or two that escape my mental list, as I don’t know any mnemonics for them. (Then again, remembering mnemonics can be even more difficult than remembering the original names.)

Wait a minute! Didn’t we color a map last week? I’d better pull that out to have it on hand. I feel proud for having thought of that, and know that Miss V will be very pleased that I’d been able to anticipate that part of her teaching strategy. Humming contentedly, I scoot my chair back so I can rummage around the inside of my school desk. In this classroom the school desks are solid metal shelves underneath heavy tabletops. I have what will decades later be known as ADHD, and not surprisingly the interior of my desk is a chaotic tangle of pencils, crayon bits, mashed-up assignment pages in various stages of completion, cool rocks, a forgotten/unsigned permission slip, well-worn erasers including one with thumb tacks (push pins) stuck in to turn it into a car, text books, treasured bits of shiny colored foil, pages of stories and drawings, Matchbox cars, and other débris.

I finally find my map and some of my colored pencils and slap them triumphantly on the desk. Then a pencil rolls off the edge and whilst retrieving it I lean over too far and crash into a neighboring student. Feeling foolish, I concentrate on finishing my preparation by smoothing out the crumpled map. Then I make yet another effort to refocus myself and sit up nice and straight to take a deep breath, responsibly looking toward Miss V – I am ready!

At that point I can see what the students around me have been doing for the past five minutes, and crushingly, I realise that I am totally off task. They aren’t doing anything at all with maps or colored pencils. The other students have some purple mimeographed worksheets out, and are writing on them. The class is quiet, or at least what the Miss V refers to as “quiet”; for me the room is still abuzz with scratching pencils, stuffy breathing, creaking chairs and desks, the ticking clock, playground noises, and the arguments of crows fighting each other for something that had fallen out of a lunch sack. Uh-oh … I freeze, feeling clammy and prickly, and my focal field tunnels down to encompass no more than a swirl in the desktop laminate.

Oh no, what am I supposed to be doing? What had I missed when she was talking towards the chalkboard? I’m stuck in short focus – I have peripheral vision but am not making any sense of it, so anything written on the chalkboard on the other side of the room has just become totally inaccessible to me.

This isn’t the first time I have gotten distracted, or have had an auditory or visual processing blip, or simply haven’t been able to see around the older-and-bigger students and thus misunderstood an assignment. So I know that if I once again ask the teacher what she just said I would get in trouble for “not paying attention”, and if I once again ask a nearby student what the Miss V said I would get in trouble for “talking out of turn”.

I need to do something to figure out what I should be doing … I will just check my neighbor’s page to see what the subject is, and what we are supposed to be doing. Having already annoyed one student by nearly falling on them, I graciously lean the other direction – thus unintentionally managing to annoy two students in as many minutes.

Suddenly Miss V is there looming over me, and her reprimands swirl around in my mind, the sentences weaving together and echoing in broken chunks. She is glaring at me, and once again I am unable to make eye contact so am staring at the ruffles on her pink blouse, stammering as I try to explain, “I was jus’JUST looking at oowwwhat she was doing …”

And that is why I appeared noncompliant and dishonest, and how I got into trouble for cheating on the reading worksheet about the Huron Indians.

Sometimes what looks like cheating isn’t. Rather, what we have is a student who is utilizing other environmental sources to get needed information. The distinction here is that the student is looking at another’s materials not for the answers to the assignment, but rather answers about the assignment, such as which pages or problems are assigned, or how the work is to be performed (e.g. in the book, on a piece of paper, writing out the questions or just the answers, putting spelling words in sentences or just writing them multiple times).

After all, it’s generally thought a child with perfect hearing should be able to understand directions. Included in this are the assumptions that in addition to basic sensory hearing, “hearing” includes being able to maintain attention (listening), being able to understand what is heard (decoding), and also knowing what is meant by those words (interpreting).

Corrective lenses should also mean that the child can see the board as well as anyone else. Included in this are the assumptions that in addition to basic sensory vision, “seeing” means being able to maintain attention from the beginning to the ending of the writing process (watching), being able to orient and select what is seen (discriminating), and also being able to decode what is meant by partially-written instructions (inferring).

Lastly, it’s generally thought that an intelligent child should be able to put it all together, to integrate the sensory information, and then turn around and express that processing appropriately, in task performance (planning and execution), in verbal responses (articulation), and in nonverbal responses.

Sadly, many people have never considered how many steps there are to processing sensory information. Next time you have a student who appears off-task, noncompliant, willful, rebellious or deceitful, don’t automatically assume that the student is misbehaving on purpose. This is too simplistic. It’s not always about the student trying to aggravate you – it may not be about you at all. Sometimes won’t is really can’t. And sometimes can’t is really can’t always.

Stymied by Semiotics

Sometimes people don’t say what they mean, or don’t mean what they say.

Sometimes it’s because they were taught self-effacing modesty or “not wanting to bother”, or from being euphemistic (saying “passed on” instead of died). Sometimes it’s from embarrassment.

And sometimes, I have NO idea why people say what they say!

My problem is that I am more inclined to straightforward, pragmatic communication, and talking to most others is like conversing in a foreign language.

One evening, my husband asks me, “What would you think of Italian?” Hmn, I remember eating at the last Italian restaurant we went to, and answer, “I don’t feel like having Italian tonight. Mexican sounds good to me, or Chinese.”

We were on the road, discovered that the Mexican place had closed, and he finally told me that he wanted to try out the new restaurant that had opened nearby! I said sure, because their menu could be really different than the other places we have visited.

Apparently he was disappointed because I had ruled out Italian food, and by not going along with his very indirect and implicit suggestion, was (nearly) denying him the opportunity of trying this new place. He took denying his suggestion as something personal, apparently. Once again I have managed to create Grave Disappointment through complete ignorance of what he wasn’t saying.

The thing is, most people do understand this kind of implicit, indirect conversation. It’s the whole mangle of semiotics! The signifier, or thing they are saying, does not literally indicate the signified, or idea they are meaning, and the action they perform does not indicate what they are wanting. Imagine someone gives you a bouquet of red roses, which signify “I love you”. But you are allergic to roses and reply, “Oh, no thanks, I can’t bear being around those.” Person feels rejected.

But I find the symbolism of objects easier to understand than the symbolism of unspoken conversation. Sometimes I catch it, through sheer force of experience. Sometimes I sit there mystified, hoping that something later in the conversation will make things clear. And sometimes I stumble through the conversational dance, feeling like I’m trying to waltz when everyone else is doing the bunny-hop.

I keep reminding him, “Just say what you really mean!”

Blarg! But decades of socialisation are hard to counter.

Being the Class Project: Reflections upon False Inclusion

Helping the awkward new student seemed like a good idea, so why did it make everything worse?

In fourth grade I changed schools between the third and fourth quarters. I not only changed schools, but also entirely different states, as my mother took my sister and I with her to live with Grandma for a few months. (I do not know the circumstances behind this; adults did not feel the need to explain things to children.) Undoubtedly it was to be to my benefit, because my initial fourth-grade teacher was a poor example of the profession, and I did not mind leaving her classroom. Another benefit to me was leaving the cohort of students I had been with for the past few years; I hoped the new students would be “nicer”. Unfortunately, I was an odd little girl and apparently went through life with a sign on my back that read “clueless,” as I was to be picked upon where-ever I went.

All transfer students face the same challenges of adjusting to different neighborhoods, buildings, teachers, textbooks, rules, and grading schemes. Apparently it did not take long for the teacher to catch onto the fact that I was not adjusting and making friends in the hoped-for manner. Presumably a request was put to my classmates to help me by offering me encouragement. I have no idea how this was instituted; like many of the subtler or implicit social things, the effort was completely off my radar.

One of the reinforcement mechanisms the teacher had was a “warm-fuzzy” type box for the students to drop in anonymous notes praising each other for various activities. These were read aloud by the teacher once a week. After I had been there for a couple of weeks there was an abrupt flurry of missives complimenting me on my efforts at spending time on reading or being helpful in my classroom duties. I found such approval odd, for we all had the same duties, and reading was simply something I enjoyed. Why should someone be commended for having fun? Actually, I found such praise to be entirely unrewarding, and the realization of that sat uneasily upon my young mind. I did not have the concept of “hollow praise” in my mental world yet, but I knew that although the words given to me were accurate, they lacked any semblance of real meaning. If the immediate purpose of this exercise was to boost my self-esteem or to comfort me, it truly did not work. Rather, it made me more anxious with the indescribable angst about how I was “supposed” to feel, and added to the ever-growing concern and unease about what I was “doing wrong”.

Moreover, if the long-term goal of this exercise was to initiate friendships between myself and the other students, it likewise did not work. Friendship is usually a natural result of being together for periods of time, of having similar backgrounds, circumstances and interests. Given the numbers of students in the classroom, the chances of at least one or two becoming my friend would have seemed likely. However my scholastic aptitudes may have been erratic and wanting, I was obviously a socially awkward child. Not only did I lack the physical graces necessary to playground games, I also lacked the interpersonal graces that were becoming much more important among ten-year olds. However, I was not just a clumsy nine-year old girl, I also had invisible differences that handicapped my social abilities. I had trouble recognizing people, and it took me a long time to figure out ways of reliably identifying them. My conversations lacked the kind of give-and-take where one speaker offers the other person conversational openings. I had no sense between when people where done with a sentence or done talking, and was prone to interrupting (I still have trouble with this at times). For all I had a rich imagination, I did not have the intuitive sense of what the stories were supposed to be for “Barbie Gets Married” or other doll games; I derived more pleasure from arranging dollhouse furniture than in doing anything with the figures.

I was much more interested in learning about and discussing nonfiction, and my particular passion that year was the fascinating realm of mysteries, detectives, spies and secret codes. These were not however, the interests of most of the other girls who prattled interminably about horses, pop music, or Betty and Veronica comics. They instead were developing interests in being stewardesses when they grew up, or in reading and endlessly emoting over pre-teen romance stories. My mother complained, “Why can’t you be more normal?” The girls told me that I sounded like the Professor from the Gilligan’s Island television show and laughed at me. I could not figure out why that was not a compliment; he was the only sensible person in the show!

Once again, I found more pleasure – and the opportunity to recharge my energies for the rest of the school day – by spending all recess on the swings or reading a book. “Oh, you don’t want to do that,” the teacher told me, nudging me away from where I was sitting leaning against a tree trunk and reading my latest book (a library volume on how FBI agents caught counterfeiters) “Go and have fun with the other children.”

The efforts to include me failed on several fronts, but they all had the same ulterior mode of operation. Each of the different manœuvres relied on trying to create friendships by having the previously-bonded group of students “help” the newcomer.

Oh, they tried to help. Two or three girls made me their special case for a couple of weeks, until they tired of the exercise and dropped me from their attentions. They dutifully tried to help me integrate into their little play groups, but it was quickly apparent that I was the unplayable Old Maid in the card deck. Given a choice, eventually no one wanted to add me to their games; my presence was a burden whether on the ball field or the skipping-rope line. The determination of these few students was probably encouraged by the teacher (and other staff members), and undoubtedly they thrived on the social rewards of being good junior helpers who would care for someone needy. If nothing else, my being the inferior “other” just strengthened the existing social bonds between them.

Unfortunately, caring for was not the same thing as caring about. If I complained to the teacher about being put into awkward situations from being pushed into playgroups where neither I nor the children wanted my presence, my concerns and discomfort were dismissed. “You should thank them for doing that for you,” the teacher told me, “They’re letting you play with them. You should appreciate that.” But when I played with them, I was made fun of for my inability to do things the right way. I could not understand why I should express thanks to others for the opportunity to be ridiculed.

Ah, ridicule … I was deficient in any sort of concern for fashion fads, and gave scant thought to my appearance; putting on clean clothes and more or less brushing my hair was adequate in my book. Being tactily defensive, I could not stand to let anyone mess with me. The problem wasn’t who was doing it, but what they were doing. When my mother brushed my hair she would order, “Stop being so squirmy! Why do you have to be so difficult?” If I complained that being handled hurt, she dismissed my protests, “This doesn’t hurt – stop being so whiney!” Even collar tags on store-bought clothes drove me nuts. “Just ignore it,” Grandma told me, “you’re being too sensitive.” (In turn, Grandma could never stand the feel of cotton balls that came in aspirin bottles, but somehow that was different.)

The girls tried to help me look more girly by doing cute things with my hair, but my long, limp tresses were not amenable to being braided or to holding barrettes. The hairdressing felt like an attack upon my body, a strange sort of help-attack. This activity was especially bad because I was no longer even a person but rather a living salon dummy that needed fixing up. There was a strange lack of personal boundaries; they could touch me but I was not allowed to touch them in like manner, which I could not comprehend. Worse, I was not allowed to protest this inequality, and they chided me, “Hush now; hold still and be a good girl. We’re only trying to help you.” And there I was, compelled by everyone important, that I should coöperate and make friends. “Don’t be a cry-baby. You want to be pretty, don’t you?”

Help was apparently something that is done to you and for you; I was the passive recipient for help. They were strangely disempowering, these activities that were ostensibly for my benefit. They certainly did nothing to integrate me into the student body. Instead of improving my own grooming abilities, the whole “fix up Andrea” scene only served to further socially disable me. Demonstrating their superior hairdressing abilities not only affirmed their capacities for following the proper rôles, but also strengthened their memberships in the clique with all that social grooming behavior.

Together, my disinclination for being swayed into primping, and my inability to be socially coerced into behaving normally, had serious affects upon my acceptance into the social milieu of the schoolyard and neighborhood. I was poor at “passing” and although my differences were not obvious at first glance, they eventually piled up like snowflakes obscuring the scenery. People dislike it when someone manages to pass for a while, because the majority then feels that they have been deceived. I was the odd one out, but unlike Rudolph the Red-Nosed Reindeer, did not yet have a special talent that would earn me begrudging tolerance for being useful in my oddity.

Their attempts to normalize me repeatedly failed, and I bore the given responsibility for that failure. It was my fault that I had problems; I just needed to “try harder” to fit in and be a fully functioning member of the scholastic social scene. The hidden promise was that if I managed to overcome whatever obstacles were in my path, I would be accepted. However, the true obstacles I had to overcome were not intrinsic, but due to the others’ lack of acceptance of me as myself. As Charlie Brown lamented in the Valentine’s Day cartoon special: “I know nobody likes me; why do we need a holiday to emphasize that?”

I knew there was something terribly wrong with this entire paradigm, but did not understand it well enough to identify the problem, much less to effectively protest against the dreadfulness of it. Unfortunately, this was only fourth grade. There was much worse bullying and sexual harassment in the years ahead of me.

Bibliomeme

Mum-is-thinking tagged me to answer a book survey. My answers are a motley collection, and I think that motley collections are always the most interesting. I’m guessing that people like to read these kinds of meme-tag surveys because they either want to hear how others have loved the same books they have, or else want to hear about books they had not yet (or possibly would not have) encountered, but would also enjoy.

One book that changed my life
I’ll have to take this is “one of many” rather than as “the one with the greatest impact” because surely different books have had done this at different stages in my life. There are a lot of contenders for books that were the first (if not always the best) to open up my knowledge-base to completely new fields of understanding, such as those on AD/HD or autism. Those are valuable in that regard, but more important are the books that give a different kind of insight, looking behind social paradigms to critically analyse the how and why of human interaction.

For the way that humans interact with their environments, Donald A. Norman’s The Design of Everyday Things looks at the problems that bad design causes people, and how people assume that their difficulties are considered to be their fault, rather than bad design. He touches but lightly on the issues of handicap accessibility, and I don’t think he mentions Universal Design at all, but the central message is still the same. My inner geek adores good, useful, imaginative and æsthetic design, and it drives me nutz when tools, machines or environments are badly designed.

For the way that humans interact with medical & emotional health care providers, Paula Kamen’s All In My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, And Only Slightly Enlightening Headache that describes some of the problems with the medical models of psychology, such as being a problem patient rather than a person with a problem, or the need to find “cures” for everything when instead one can be helped and be healed without being cured.

Strong messages from both of these books.

One book that you’ve read more than once
Who doesn’t have a comfily-tattered set of J.R.R. Tolkien’s four-volume Middle Earth trilogy? (Yes, trilogy means three books, but The Hobbit is part of the Lord of the Rings, and science fiction & fantasy is rife with trilogies composed of more than three volumes.) For my favorite re-read when stuck abed with a nasty virus, I really enjoy Anne McCaffrey & S.M. Stirling’s The City Who Fought. It’s a fun piece of adult science fiction with the well-drawn characters and nitty-gritty techy details and swashbuckling action that make for a engaging read.

One book you’d want on a desert island
Most people like to pack either something really long, or else an extensive practical reference book. But I don’t think that I’d want to be stuck with some interminably long piece of fiction, no matter how well-written, and I’ve probably read enough references over the years that I could eventually solve any manner of functional issues. What I want would be a huge book of blank pages, so I could keep a journal of thoughts about various things. It’s often difficult for me to work out mental explorations without a written medium. I’ll remember or figure out the right knots for lashing together poles, but being able to compose my thoughts is integral to my equalibrium.

One book that made you laugh
Terry Pratchett’s Mort was the first Discworld novel I ever read, and Death is still my favorite character, possibly because he’s so practical and the human world doesn’t always make sense to him. Plus, he talks in ALL CAPS. Soul Music is damn funny, too. I love the puns and unexpected turns in Pratchett’s books.

One book that made you cry
Ebbing & Gammon’s General Chemistry (sixth edition). The authors of this uninspired, heavy tome had an interminable number of equations to solve. I made it through four semesters of chemistry and sweated through this volume for half of them.

One book you wish you had written
Actually, I’m still compiling thoughts for my next book. I don’t tend to dwell on wish-I-had’s.

One book you’re currently reading
I never read just one book at a time, which explains why it takes me so long to finish anything! I just finished Joseph P. Shapiro’s No Pity. I’m furthest into Majia Nadesan’s most interesting Constructing Autism, which I will finish as soon as I remember where the hell I left the book laying about.

Currently my bedside pile contains: Thomas Skrtic’s Behind Special Education, Alfie Kohn’s What Does It Mean to Be Educated?, Kegan & Lahey’s How the Way We Talk Can Change the Way We Work, Marshall B. Rosenberg’s Nonviolent Communications, Fisher & Shapiro’s beyond reason, and Walter Kauffmann’s translation of Basic Writings of Nietzsche (maybe after finishing the book I’ll be able to spell N’s name without looking it up every time). I had just started on Richard Dawkin’s The Selfish Gene and then my daughter took it back with her to college; bad girl. By default I’m also reading Hardman, Drew & Egan’s Human Exceptionality: School, Community and Family because it’s my current textbook.

One book you’ve been meaning to read
The future pile-by-my-bed: Daniel C. Dennett’s freedom evolves, John H. Holland’s Hidden Order: How Adaptation Builds Complexity, Douglas R. Hofstadter’s Gödel, Escher, Bach: An Eternal Golden Braid (I think that one may take a study-buddy to gain the most benefit), the Routledge Critical Thinker’s series editions about Gilles Deleuze, Jaques Derrida, and Michel Foucault, Eli Maor’s e: the Story of a Number, and David Darling’s Universal Book of Mathematics. Doubtless there’s more, but that’s what’s on that section of my bookcase.

Tag five other book lovers
Anna, Catana, David, Liam, and Whomever wishes they’d been tagged but felt like they needed some kind of “official” sanction to simply write and post a list!

Small and Medium-size Talk

For me, “small talk” is analogous to cola. People all over the world dig these fizzy, sweet drinks. It makes their day, sometimes repeatedly, all day long. Every now and then I will re-sample some Coca-cola or Pepsi. Yeup, I still hate cola. I am not fond of carbonation, it is too sweet, and the flavor I simply cannot enjoy. Why do people love this stuff? They even enjoy the caffeine-free or sugar-free sorts, so that cannot be it. I have no idea.

So there I am stuck in some social occasion, with my tea or water-no-ice-please, or the hard to find ginger ale, holding it with an occasional swirl, hoping it quickly goes flat. I have those dire mental questions about this conversational dance:

Is it my turn to contribute something?

What would be appropriate to say?

Am I talking too much or not enough?

Don’t forget to make a little eye contact.

Are they really done talking? Whoops no they weren’t, oh dear.

Okay, that IS a pause … now it is a very long pause; am I supposed to say something, and if so, what about?

Are we done with small talking?

Should we move apart?

What kind of transitional comment am I supposed to make then?

The very-small talk of passing and greeting in the hallway, or waiting for a turn at the microwave, or for the coffeepot to finish brewing, is not so hard. One acquires a battery of general phrases to adapt to the particular day.

The big talk — actual conversation as exchange-of-information with persons whom you know or with whom you have things in common — during lunch time or at a meeting is okay.

It is the middle-size talk, the chit-chat, that is difficult. This is the sort one finds at dreaded office parties, dinners with fellow convention attendees, mixers with guests visiting the department, weddings, and such. These people often have some thin connection to one’s self, but for a topic of discussion it is too meager, and if we are near the end of the day there is nothing new to add, and besides by then people want to chit-chat about something else.

If you are standing or seated next to the spouse or “significant other” of the actual attendee, then you have nothing in common, at least nothing than can be perceived in a couple of minutes. Now, it may be that both of you have visited the same place, or have a passing interest in some obscure topic, but without some kind of handy visual “Index Of Interests” pinned to the lapel like military ribbons, who is to know? Perhaps in an hour’s time you will have discovered that spider-thread of connection, but meanwhile, there are countless bits of the dreaded small-talk to pick one’s way through.

And of course, there is the trap of somebody accidentally mentioning something that is a special interest of mine, and unless I am being especially self-aware, I am likely to data-bomb them with more information than they wanted. And of course, I usually cannot tell when “enough is enough already”. ::sigh::

Of course, my additional problem is that I have super-acute hearing for all the accessory noises in the environment, yet sometimes have difficulty understanding what people are saying. Or near the end of the day I am so over-stimulated with sensory input that I am beginning to blank out. The edges of my brain have the sparkle and wit of a bowl of oatmeal; there is the nearly overwhelming urge to crawl under the table drapes, or find a solitary chair and stare out the window at the clouds, or just put on my headphones and rock. And yet, this is the part of the event when I am supposed to be both engaged and engaging.

Chit-chat is deadly!

On Behavioural Observations and Assumptions

Traditional ways of understanding processes

Often science has taken the approach of understanding how things work by examining situations in which things don’t work, or in which they work differently, e.g. mutations in Drosophila flies or Arabidopsis plants, or disease processes. On one hand, these situations help reveal the mechanisms / processes by showing us where to look, and by giving us a comparison for what does or does not happen.

For example, when we have plants infested with insects, sometimes we see the insects (often we don’t see them because they hide on the undersides of the leaves; insects are not intelligent, but they aren’t stupid either), sometimes we see signs of the insects themselves (such as frass, a technical word for insect poop), and sometimes we observe or measure the symptoms caused by the insects’ feeding (such as red discoloration on sorghum from greenbug aphids).

When we have people infected with diseases, we can also see the outward signs or the symptoms reported by the patient, but we cannot see the disease itself. If the disease is caused by an organism, such as a bacterium, fungus, or virus, we can see the agent, but that is not the disease. The disease rather is the mal effect upon proper functioning caused by one organism upon another*. Diseases can also be autonomic, caused by something from within the organism itself; diseases in this sense are processes gone wrong.

Technically, something is a disease if it has a predictable set of symptoms, with some sense of the cause of those symptoms, and the physiology of how they are expressed. If the cause or the physiological dysfunction is unknown, it is not a disease, but a disorder. When repeated sets of symptoms are observed, they are referred to as a disorder. Although some disorders may be treated pharmaceutically, they are not diseases.

We cannot see the disease itself, rather, the disease is something inferred by the observations and dialogue between the people with and people without the disease. In contrast, a disorder is often only discerned by the people without such, because it is defined by comparison; order is defined by like, and disorder is defined by not-like. Diagnoses are defined by relationships and perception as much as, or even more so, the physical states.

Limitations of inference

When we have people who are autistic (et cetera), we diagnose it likewise by the “signs and symptoms” or the observable data of the behaviors. What we cannot necessarily determine are the causes of those behaviors. It is an accepted fact in some disciplines of science (such as ecology) that the specific process cannot necessarily be determined by the end results! We can hypothesize several likely causes, or series of causes that would produce the current situation, and we can do experiments to test if we get similar results, but those experiments do not guarantee that the specific causes and processes are what caused the current situation.

Quite frankly, our ability to understand what is going on is limited by both our ways of thinking, and by our abilities of perceiving the world. Ethologists who study animals are more often aware of their inabilities to share the same perceptions as their subjects than are behaviorists, because it is more obvious that the Umwelt (perceptual world) of a honeybee is different than that of a human being.

What we can discover is determined by how we approach the problem conceptually as much as by the methods we use, or by the data we gather (i.e., “If the only tool you have is a hammer, all of your problems look like nails.”)

A person who assumes that the behavior exhibited by another person results from a particular set of sensory inputs and mental processing, is therefore going to be limited in, and also sometimes erroneous in their understanding of that behavior. Five different people can do the same thing for five entirely different reasons. For one of them to assume that the others do the same thing for the same reason they do is a kind of egocentrism. In this way, the much-vaunted neurotypical “theory of mind” that allows people to guess others’ motivations by implicit information can actually lead them astray, because they assume that others do things for the same reasons they do.

Conversely, when people do not see the expected behavioral results from certain circumstances, they can sometimes misunderstand what is going on and why. If several people laugh at a television show and I do not, they may assume that I do not have a sense of humor. In truth, I have a well-developed sense of humor, and will spontaneously giggle at things I remember, or jokes I remember and re-tell to myself, or laugh from other television shows, but I do not always find the same things funny that others do. In this case, their conceptual limitations prevent them from understanding alternative causes.

Even if all the information is present to be observed, and even gets recorded through some miraculous accident of experimental design, the underlying causes and effects may still be hidden because the observer has neither the intent nor the capacity to notice and understand it. We can only answer the questions we ask, even if additional answers are there in front of us. Likewise, if we ask questions the wrong way, we will not be able to learn the right kind of information.

The current mode of research has derived from the pathology model, where we try to figure out what goes wrong. This is not bad. This is a necessary approach, in many ways. But it should not be the only approach. One of the best ways to figure out what we should do, and what does work, is to examine the successes!

Problem 1: warped perspective

It is because of the historical origin of psychology, (it stems from studies of mental problems) that the dominant paradigm is “average = normal”. Much of the diagnostic phrasing is focused on disorders, and it tends to pathologize what is different from the norm. If you don’t fit within the boundaries, then something is wrong with you, not that the situation doesn’t fit you.

On the other hand, these situations also tend to give us a warped perspective. The warping stems from the fact that identifying processes by “broken-ness” gives one a “Dysfunction” – and dysfunctional – view of the universe. Things working = function = normal. Things working otherwise = not working = dysfunctional = abnormal.

To follow the disease model is not correct because average is presumed to be equivalent to normal. Actually, “normal” is a value-laden word, because “normal” means both “average” and it means “okay”. Abnormal means not-average and not-okay. It is a false dichotomy to assume that not-average means abnormal!

There are those who deny the appropriateness of difference; one must do their best to fit it and not be different to be okay and accepted. I am different in many ways, many not visible. One difference is visible: I have fair skin and rather than tanning, will freckle and easily sunburn. This is genetic. Because of this genetic difference, I exhibit different behaviors than do most of my peers. For example, I do not use tanning beds or lay out on beach towels to sunbathe, and will do my field work clad in a brimmed hat, sunglasses, bandanna, long-sleeve shirt, cotton gloves with the fingertips trimmed off, long pants, and socks. The average person does not wear this much clothing when outdoors on a 104° F/40°C day; however, no one would say that I am “abnormal” for exhibiting these behaviors. These behaviors are appropriate and healthy for someone of my genetic makeup; they prevent me from stressing and harming myself. These behaviors do not create problems for others, and only create social disturbance because they are uncommon in some social realms. There are no, nor should there be, any negative value judgments attached to behaving differently than my peers because of this genetic difference.

I am also sensitive to noise, especially chaotic or high-frequency noises, and will in some situations wear ear-plugs, withdraw to a corner, or limit the frequency or duration of my visits to certain places. These behaviors are appropriate and healthy for me; they prevent me from stressing and getting severe headaches. In contrast, these behaviors are considered odd or unacceptable, but without them I can end up twitching, grimacing or swaying from the noise stress, and these reactions are considered even more unacceptable!

Then there are those who deny differences exist as real differences, and that if one cannot achieve things in the same way or at the same rate as “everyone else”, then they just are not trying hard enough or are stupid. People with AD/HD (et cetera) are simply “making excuses”.

“Everyone else” is an interesting myth of self-contradiction; it assumes that everyone is the same, while at the same time acknowledges the fact that one is not the same. The myth of “everyone else” makes the different person responsible for the having and resolving the problem that others create. The meta-issue here is that the person’s difference is not the problem – the others’ lack of acceptance is the problem! I do not “suffer” from any number of differences I have, I suffer from the lack of acceptance and understanding of those differences and how I can best function.

The unsavory alternative to people rejecting differences can be their amazement that people can accomplish things “despite” disabilities. Imagine during World War II, when in the US women went to work in factories. That women had competently done hard manual labor in factories in previous decades was often forgotten (the working poor or various ethnic groups didn’t count of course); instead there was amazement and collective self-applause because my goodness, women not only wanted to do factory work (how noble! how patriotic!), but could even do the factory work and do it well (how extraordinary). Those women workers who could perform well were an inspiration, they could overcome their lack of mechanical expertise, or inherent female weakness or even the fact that they suffered from monthly hysteria. Of course, after the war was over, the women were to cheerfully return to their kitchens and let men do the “real” work; factories wanted their normal, able workers. Of course, such attitudes seem dated and silly now; there is nothing amazing about women working, just people with “disabilities” getting college degrees or married or having families or working or …

Problem 2: assigned motivations

Another problem with the current model is that it tends to assign motivations that do not necessarily exist. For example, someone offers to share with me a slice of his or her home-baked, fragrant, pecan pie. If I smell the pie and love to eat pecan pie, I should [want to] eat the pie, shouldn’t I? But behavior is not merely stimulus-response; there is also the previous history of the organism, the perceptual realm, the mental processing, and the current state of the organism. For example, previous experience may lead me to drool when I smell pecan pie, but if I am not hungry then I will not have this reaction. If my nose is stuffy from a head cold and I can neither smell nor taste much, then I won’t have this reaction. If the offer of pecan pie comes with the additional requirement of staying and eating it at an intolerably noisy-busy lunchroom then I may also decline to choose to eat the pie. The person offering the pie may imagine a whole variety of motivations for my refusal of the pie, including suppositions about my judgment of their ability to cook good pies, or my desire to socialize with them. These motivations are imagined, and do not necessarily exist!

Problem 3: disemphasis

Although my differences affect what I do and how I do things, they do not exist separately from me, nor they responsible things, e.g., my ADHD is not “being bad today”. I may be judged “unsocial” when rather I am adverse to be in crowded, noisy places. This actually transfers my real or perceived motivations from my thoughts and my actions, and assigns them to the “unsocial dysfunction”.

The problem with this is that it changes the emphasis of thought from who I am and what I need to “what my problem is” and “what treatment my disorder requires”. Just as hospital patients run the risk of not only acquiring not only nosocomial infections, they also run the risk of being identified by or replaced by and treated as their maladies, e.g. “the COPD in room 243”.

Lacking diagnoses (and attendant “treatments”) for many years, I cannot say what my life would have been like had I been considered to be a child student with disabilities. I can say that missed diagnoses are just as bad as mis-diagnoses. I can also say that as an adult, the time I must spend getting diagnoses done, paperwork filed to “prove” such (it’s not real unless someone else says so on paper), making arrangements for “accommodations” (one must be very “special” to have enough time to finish a test, and to take it without a lot of distractions), having to go through the schedule re-arrangements required for such, and all the other stuff rather detracts from other things I could be doing, like studying or lab work. This really improves my ability to be a good student, right?

* If disease rather is the mal effect upon proper functioning caused by one organism upon another, could we then assert that some teachers/ clinicians/ social workers cause disease in autistics by interfering with their normal functioning?

Going Through the Motions

“I’ve been making a list of the things they don’t teach you at school. They don’t teach you how to love somebody. They don’t teach you how to be famous. They don’t teach you how to be rich or how to be poor. They don’t teach you how to walk away from someone you don’t love any longer. They don’t teach you how to know what’s going on in someone else’s mind. They don’t teach you what to say to someone who’s dying. They don’t teach you anything worth knowing.”
~ Neil Gaiman

“Pay attention!” my mom would command, “Look at me when I’m talking to you!”

And then I’d wonder to myself, (Which? Pay attention to what she was saying, or look at her eyes when she was talking to me?)

Eye contact among autistics is a funny thing; some can do it easily, some situationally, some rarely, a few never at all. Interestingly, how well someone can make eye contact has no bearing as an indicator on how well one can socialize, the verbal-communicative abilities or other-communicative abilities, intelligence, sensory sensitivities, or any number of other traits sometimes associated with autism. (I also work with children with other developmental disabilities who can make excellent eye contact, but have great difficulty with verbal communication and other kinds of social interactions.)

Eye contact is also a cultural thing, as such is considered to be rude in other parts of the world, meaning that gaze aversion is not necessarily a problem elsewhere.

So basically, one’s ability to make eye contact when interacting with people doesn’t mean squat in regards to other abilities. It just means that making eye contact can be difficult.

Personally, it’s something I have to make a conscious effort to do in job interviews, doing public speaking, and in some conversations. This conscious process distracts from other mental efforts, such as the extra work required by my Auditory Processing Disorder, and making the eye contact is also distracting in itself because it detracts from my ability to retrieve and process information needed for the conversation. Some of my perceived “making eye contact” is really just me doing a little lip-reading when there’s background noise getting in the way of auditory filtering and decoding.

And yet, in this part of the world the eye contact issue is a big deal for some people, or so you’d believe from reading various kinds of autism resources. People spend great amounts of time ensuring that their autistic children learn to do this when they are expected to do so.

Like teaching a Deaf child to lipread and use speech, some kinds of social training are emulator processes. The perceived improvements in communication can be deceiving because the Deaf person is not necessarily getting the same quality level of communication from the process, and is working many more times harder than anyone else to get what they do.

Recent research by Dr Gwyneth Doherty-Sneddon and others at Stirling University has shown that gaze aversion reduces the cognitive load (amount of mental processing required), thus enabling both adults and children to better recall information and to better formulate responses. Requiring eye contact actually reduces the factual quality and the verbal complexity of responses.

So when we teach and require eye contact, what we must ask is, Who really benefits from this? Does it help the autistic? Or does it mostly just make the neurotypicals (NTs) feel more comfortable? Is the autistic really getting the same results (of being able to discern the non-verbal communication), or are they just going through the motions?

This is important – it’s not just window dressing designed to put others at ease – if the autistic person merely appears to be conversing typically, then the NT half of the dialog assumes that the rest of the communication is also happening. And of course, when something isn’t perceived by the autistic, the NT is frustrated and may erroneously attribute rudeness or lack of caring. And/or, the NT is confused because the non-verbal signals the autistic is giving off don’t jibe with what is “supposed” to be going on.

In any regard, if one is not getting the real or perceived benefits, then it’s just play-acting. It’s an elaborate social lie and a misrepresentation, and ultimately benefits no one. Furthermore, trying to stamp out gaze aversion makes various kind of mental processing more difficult, and for crying out loud, no one needs more mentally-taxing work!

Parents, therapists, educators and clinicians are focusing on the wrong thing (pardon the pun). Eye contact or gaze aversion is merely a sidetrack issue. What people are really concerned about is whether or not the individual of concern (child or adult) is truly engaged in the communication process. Is there mutual participation, comprehension, and the ability to share understanding and information? These are the real concerns that we need to be looking at.

andrea