System Overload (Error Messages)

21 February 2007 at 5:46 (Autism/Asperger's, Coping strategies, Meltdowns / Shut-downs, Proprioception, Tinnitus, Tourette's / tics)

CRASH!

Some of us are old enough to remember the Ed Sullivan Show, which was a variety show on television. One guest was a man who would spin plates on sticks. He’d prop a dowel onto a stand, and get a china plate spinning atop of it (the top of the dowel inside the lip around the base of the plate). Then when this one was going, he’d start up another plate, and another one, then have to rush over and give the first plate a fresh spin because it would be getting wobbly, re-spin the second plate, add another plate or two, re-spin the third plate, and so on, until his time was spent rushing back and forth re-spinning all his plates.

Of course what made this act popular was that it wasn’t just a parlor trick; it was a metaphor for all the things we have to juggle in our lives and sometimes cannot. You know what happens when you have too many plates spinning; one is likely to get away from you (crash!) as you devote time to another …

Some days everything runs pretty well. I compensate for various difficulties. I feel smart, converse appropriately, don’t get overly sidetracked, and get things done. No one notices that I am having to work as hard as I really am to “spin all my plates” and keep them in the air.

Other days are bumpy and uneven; I do well at some activities, but less well at others. I can spin all my figurative plates with varying degrees of efficiency, but it is obviously a strain and I don’t try to keep the intensity up all day. I might drop a plate or two, but manage to pick it back up and get it going again.

Then there are the days when my plate-spinning skills suck. I get too overwhelmed by the quantities of novel inputs I am trying to sort out, or the numbers of simultaneous inputs that all require high-level cognitive work, combined with my internal processing glitches. Days like this are not unlike switching from a high-speed cable internet connection on a new computer with a GHz processor, to a low-speed dial-up connection on an old computer with a low-MHz processor. The slow internet connection makes the Web pages load s-l-o-w-l-y frame by frame. Trying to run more than one program at once makes all of them process in an anxious, halting manner. Every now and then an error message pops up, a program will abruptly close, or the entire system will freeze up and the computer has to be force-quit and rebooted.

When my processing gets overloaded, my perceptions of things around me are reduced. Objects are not individually distinct, but can erratically devolve into indistinct patterns of color and lighting. I cannot identify people by my usual gestalts of nonfacial characteristics, and sometimes I don’t even perceive them as people but just as moving objects. Some kinds of visuals, such as high-contrast vertical stripes or flashing things derail my attention completely, leaving me frozen and entranced.

My reading ability gets dyslexic – I interpret a newspaper headline as “Stove Jar Bunk” (instead of “Star Drove Drunk”), and I mix up 2 and 5 or 7 and L. Grading multiple-choice assignments with all those b and d answers is dizzying, especially with so many of our students also being dysgraphic. My own writing ability gets erratic, and I spell things inside out, drop entire words, have to focus on forming individual letters, and at worst writing only works at the level of “autofill” where I’m mostly writing or keyboarding by kinesthetic memory.

Sounds get intermingled, and the audio processing track gets stutters, repeat loops, and blank spots. The tinnitus gets worse, and goes from mild background mosquito-whine in one ear to louder buzzing noise or two-tone noises in both ears. Sometimes when people talk to me I don’t realize they are speaking, or that they are speaking to me, so there’s additional decoding delay. When I talk I am more likely to stutter, drop certain phonemes, substitute some random word, or stop in mid-sentence because I have suddenly lost the rest of the words I was about to say.

The number of texture sensations I feel are reduced to just one or two, but frequently switches from my socks, my glasses, the chair, my shirt, or something in my hand. Sometimes those sensations become magnified, where much of my world becomes filled with the annoyance of socks drooping down my ankles. When I try to focus my attention to one sensory processing channel, then I can’t pay attention to the others. The tics get more pronounced, I shake one hand repeatedly, and my proprioception is off, making me trip or drop things or walk in a somewhat spastic manner.

I’ve heard that outwardly I appear clumsy, stupid, drunken or sick. Random people ask me, “Are you okay?”

It takes so much effort to realise that (1) the noise is people talking (2) the person is talking to Me (3) who this person might be (4) what the words are (5) what the words mean (6) that they are asking a non-rhetorical question that requires some kind of answer (7) trying to self-assess: am I okay? (8) what would “okay” be? (9) does someone else need to do something for me?

Coming up with an answer that is both functional and is bracketed with something close to the appropriate “social noise” (polite fluff) is a bit much to expect from me at this point. It’s hard to think of a suitably informative reply, but of one thing I am certain: please don’t make me go sit in tiny places painted institutional pea-green. I’m not sure where I’ve encountered those before, just that I know it was a not-good situation and I don’t want to go there again.

The best answer is an “I’m okay,” pulled from the mental drop-down menu of stock social phrases. Most people don’t really want to get involved; they just want to be reassured that an ambulance is not required. Even if I’m not making eye contact and my delivery sounds flat, this seems to be an adequate answer. Sometimes I’m mentally stuck on that drop-down menu, and deliver an additional, “Thank you,” or “Excuse me,” but apparently this is okay because the value of social noise currency is in the act of exchanging, not in the specific coin.

Getting too overloaded means I have to shut down for a while, slumping numbly in a chair and rocking without being focused upon anything. Unless of course I get snagged by one of those shiny, glittering or flashing things, such as the glowing blue light on an electronic mechanism, or slips of sunshine flickering through tree leaves. Even so, I’m not entirely “there”, and am probably still rocking a bit.

The trick is noticing when I am at the beginning of getting overwhelmed, of noticing the buzz that’s swamping my nervous system in transmission noise. The problem of course, is that by then I have even less mental processing for self-monitoring to realise what’s going on!  But I’ve figured out that experiencing tingling-numbness, really loud tinnitus, or pronounced difficulty in reading or writing are useful cues that I need to take a good break from whatever I’m doing.

Otherwise my plates wobble and start crashing.

9 Comments

Ecological Adaptation and Disability

17 February 2007 at 20:18 (Advocacy, Inclusiveness, Insects & Arachnids)

While soaking my aching joints in a hot bath, it occurred to me that as an organism, I am not naturally suited for the environment where I am living. It’s below the freezing temperature outside, and I don’t hibernate or have enough fur or feathers to keep me warm, plus I would have extreme difficulty acquiring enough food to eat with just tooth and nail. Furthermore, human young are born at any season, and take years to rear. From a purely biological perspective, you would think that this hominid species would be limited to foraging family groups living in tropical areas. We are in high contrast to other intelligent, tool-using species that are well-adapted to their environments.

In biology, there are a lot of different means to achieve the same end. All living organisms need to acquire particular kinds of molecules and the energy to assemble them into useful materials so they can grow and reproduce, and also be able to get rid of the kinds of molecules they don’t need; if they reproduce sexually then they need to find another organism with compatible genetic material; and lastly they need to be able to fend off other organisms and to protect themselves from abiotic (environmental) forces that interfere with these activities. Organisms are “successful” by how well they adapt to the available ecological niches, or how well they can create or exploit new kinds of niches.

Cetaceans (whales, porpoises, dolphins) and proboscids (elephants) are nearly-furless, polyphagous mammalian species that are well-adapted to the ecological niches they inhabit (“polyphagous” means an animal eats a variety of foods, which increases the chances for successful foraging or hunting). They have relatively large brains for their body size, and are intelligent animals with long memories, good learning and problem-solving abilities, and forms of language. Hominids (chimpanzees, gorillas, orangutans) are furred polyphagous mammalian species that are well-adapted to the ecological niches they inhabit. Hominids also have relatively large brains for their body size, and are intelligent animals with long memories, good learning and problem-solving abilities, and forms of language.

Ecologists refer to such species as being “K-selected” or “K-strategists”, because the numbers of these animals will (under natural conditions) come close to the “K value”, the carrying capacity of the local environment. That means that the population numbers remain fairly high and stable, and this is reflected in the animals’ ability to live a long time and be able to care for a limited number of slow-maturing offspring. The intelligence, knowledge and learning ability, and forms of language contribute to that ability to rear those offspring, and to pass on knowledge in forms of culture.

In some contrast, the fourth hominid, the human, is a nearly-furless, polyphagous, invasive mammalian species that is poorly adapted for most of the ecological environments that it inhabits. Humans are also K-strategists, although being an invasive species with high adaptive abilities, sometimes exceeds the local carrying capacity of its environments. Because of this, humans have the ability to change local and world-wide environments to a far greater degree, and in a shorter period of time, than any other organism.

The only reason why the species is not limited to foraging bands living in tropical areas (the primæval “Eden”) is because we can create so many tools that compensate for our various deficiencies. We have been able to expand our niche beyond that which is biologically natural by taking tool-making far beyond the immediate-problem-solving level that other animals employ. Social insects such as termites, ants and bees create structures, farm fungus or herd aphid livestock, transform raw materials into honey, structural waxes and papers, but the individual species are still limited by their requirements for specific ecotones.

When the “naked ape” is disabled by not being naturally-adapted to its current environment, it responds by creating long-term tools. We create clothing and shelter to cope with colder temperature ranges. We manipulate food resources by herding, farming, hoarding, drying, fermenting, and freezing, and also by selecting, breeding and displacing species far from their natural places of origin. We create machineries of transport to move ourselves and our things. We create tools to compensate for limitations of sensory perception, to increase our ability to get information about our environments. We create tools for the greater memory/storage and dissemination of cultural information.

The human is a terrestrial anomaly because it actively seeks to put itself into disabling environments, and creates tools that will allow it to live and thrive in those environments. Orcas and other dolphins don’t create tools that will allow them to live on land, and elephants don’t make tools that will allow them to colonise temperate zones. Meanwhile, there are millions of individual humans who would not be able to physically survive in their natural environments, and I don’t just mean the “extremophiles” in low earth orbit or Antarctica. Easily 99% of the humans alive today rely upon the accommodations of farmed food, shelter and clothing, plus things like corrective lenses, hearing aids, wheels, and health-maintaining pharmaceuticals.

There’s a reason why we have different connotations for the words “nude” and “naked”. A human is only nude when they feel safe and protected from the world. But a naked human hominid, stripped of its clothing and other tools, is fairly defenceless, and not easily a successful organism in most environments.

One of the benefits to being able to modify environments according to needs is that humans are able to create so many more niches. We can create different personal environments by using different materials to perform different jobs. We can compensate for different abilities in ways that other animals cannot, and thus succeed individually. Our ability to make long-term tools and create micro-environments for ourselves allows us to be successful to live out our natural lifespans, to rear children and care for each other at different life stages.

Given that humans must compensate for so many natural disabilities, it’s surprising that we will go out of our way to create additional disabilities for ourselves, those handicaps that are created by the social environments. The idea that people should be “independent” and not need things to enable us to function is wholly absurd. We all need other people and things to learn and to function; it’s the specifics that sometimes differ. These are artificial barriers to successful living, not natural barriers.

The human being as a species is simultaneously the most disabled and yet the most successful organism on the planet. We need to remember that, especially when we seek to pretend that disabled people are not “normal” people. Specific disabilities may not be average, but being disabled is inherently normal. You can’t get much more inherently disabled than being a naked ape outside of “Eden”.

3 Comments

The Four-Letter F-Word

17 February 2007 at 3:16 (Autism/Asperger's, Parenting, Teaching/Tutoring)

They were staging a sit-in. All four of them, sitting there and staring intently at me, What is she going to do?

I looked at the other adult in the room and asked, “Did you say the four-letter F-word?”

He shook his head no. He had in fact said neither Fish nor even Chicken. But there were all four cats gathered by their dishes and staring fixedly at me. They do that every now and then – instead or one or two cats reminding some random person that the kibble dishes are getting empty, all four of them will gather round and complain at me, specifically. The woman who can read enough feline body language to know that the congregation is requesting goodies from the pop-top cans. Manna from Mama. Apparently the usual dry kibble gets boring, and they want “chicken slices in gravy” or some such thing.

Except for tonight. Spot isn’t having any of it. He’s not swarming around my ankles and meowing, but rather sitting on a dining chair and staring at me with his great, golden eyes. The goody from the pop-top can doesn’t appeal. He probably smelled the bag of grilled salmon take-out that hubby had brought home and popped in the refrigerator. Spot prefers “real” fish to the processed glop from the tin; he used to catch his own meals at a lake. In fact, the past few times I’ve cooked fish he has waited for and requested the leftovers, which he’s welcome to because fish doesn’t reheat well.

It only took a few meals for Spot to learn what I meant when I asked him, “Hey, Spot! Fish?” Spot’s a smart cat; it took less than half a dozen repetitions (“trials” as they are known in training parlance) for him to associate hearing the human word “Fish” with the generalised concept of sushi tuna, grilled salmon or poached tilapia for him to eat. Those trials didn’t even happen in the same hour or the same day.

Now, teaching Spot to learn the word “fish” did not involve any rigorous training sessions. I merely caught his attention by saying his name, then set down a dish containing some various leftovers while saying, “Fish!” It’s simple associative learning. Granted, food is a good reinforcement, and he was already aware that some of the things people say are directed to him and are meant to inform him of something.

He also knows that when I say, “Water’s boiling,” this means that he needs to get off my lap so I can get up and make a cup of tea, and that I’ll return in a minute to make a lap for him again. That’s actually much more complex; for all he knows, the syllables “Water’s boiling,” really mean, “Get up”. But he’s also observed that when I say “Water’s boiling,” instead of something like, “Okay, I gotta get up now,” or “Time to make dinner,” that I am going to return to my chair shortly, and that if he hangs around he gets to curl up with me again. Sometimes he stands on the chair cushion, rather than laying down on it, because he knows I’m likely to come back and sit down. That’s a more complex chain of events; he’s not only associated a spoken word with an action for him to do, but he’s also observing my behavioural patterns so he can choose his next course of action.

But for all of his high level of feline intelligence, he’s still limited in what he can learn. Especially compared to a human child.

If you use food as a familiar, desireable food reinforcement, how many trials do you think it will take for a human child to learn to associate a word or two with an action? For example, “sit down” or “stand up”.

Six? Twelve? Maybe fifteen?

How about over 100? We’re talking about children who have grown up in a home where other people have been using language with the child for over two years. Presumably the child knows that some of the things people say are directed to him and are meant to inform him of something. Food is a good reinforcement, and the child’s favorite foods are even used. (We have to assume that the child’s hearing is fine, and that the adult has the child’s attention.)

Here’s a parent’s description of an Applied Behavioural Analysis (ABA) training session with their child (wwwautismtoday.com/karen.htm):

“Sit down,” I’d repeat, this time placing my hands on his shoulders to gently guide him into the chair. Eyes still averted, he allowed me to ease him down.

“Good boy!” I’d squeeze an M&M between his pursed lips for his efforts, recording a “P” to indicate that I ‘d had to manually prompt him for his second trial.

“Sit down,” I’d repeat 27 more times, alternating between M&M’s, chocolate chips, hugs and tickles, recording each discrete trial.

Then I’d begin with 30 trials of “stand up,” “turn around”, and other “one-step” commands before moving on to teaching Jake to “do this” as I manually prompted him 30 times to drop a block in a bucket.

After each of the 30 trials, we’d take a structured play break.

It took a total of 150 trials over three weeks to teach Jake to sit down, 180 trials over three weeks to teach Jake to stand up, and 2,100 trials over 10 weeks to teach Jake to look at us when we called his name.

The child was two years old. There were people doing this with him for forty hours a week, month after month.

Different children learn in different ways, and on their own different time schedules. Some skills take longer than others. I was eight years old before I learned to tie my shoelaces; I had to acquire the fine-motor dexterity to manipulate the laces and maintain the right tension, and be able to remember and follow the sequence of steps. I compensated for my lack of shoelace tying by wearing buckle shoes during my first three years of school. In the grand scheme of all things scholastic, it wasn’t a big deal. It was a big deal for my parents and I do remember spending a lot of frustrated days sitting around fighting with the laces on my sneakers (trainers). Every now and then some adult would sit down with me and show me how they tied shoelaces. Thankfully, my third-grade teacher’s method of direction was different enough that the process finally made sense.

But when an instructional method requires 150 or 180 repeated trials for the child to learn to associate a word with an activity they already know how to do … that really seems like it’s the wrong teaching approach for the child.

Maybe parents are too fearful of another four-letter F-word, Fail. They are afraid that without endless hours of intensive, repetitious work (and mounds of data sheets to show for it), that their children will fail to learn and grow. Amazingly, children do learn and grow. I’m not saying that additional instructional is not sometimes necessary, but rather than given these kinds of results, such an approach does not seem to be the best method.

Applied Behavioural Analysis is neither a good nor a bad thing unto itself. But any good teaching naturally uses behavioural observation and analysis. And if those observations show that someone has not learned something after a considerable number of tries, then the instructor needs to analyse where in the teaching process the breakdown is occurring, and to consider what other means might be more efficacious.

6 Comments

Where-ever You Please

13 February 2007 at 18:26 (Advocacy, Inclusiveness, Stress, Teaching/Tutoring)

I teach community-education classes on gardening. Unlike typical college credit classes where the instructor can generally assume some base level of knowledge and even some demographic homogeneity, these attendees are a real mixed group.

I get complete novices, and seasoned gardeners who just want to pick up some new ideas. I get dysgraphic students who are relieved to see extensive handouts. I get enthused teenagers and first time home-owners, and old people who haven’t gardened since they were children helping feed the family during times of economic scarcity. I get students in wheelchairs who are glad to see tables instead of combined desk-chair units. I get students who have not finished high school and need science concepts explained, and students who have advanced degrees in other fields and want to know how the basic science gets applied in the practical side of horticulture. I get dyslexic students who request being able to audio-record the lecture or get a printout of the powerpoint pictures. I get students who have lived in the area for years, and others who have just moved from a completely different part of the continent and are unfamiliar with the climate and local flora. I get students who are shadowed by sign-language interpreters for whom I fetch seating and make sure that the lighting is set to illuminate them. In other words, I get ordinary students who are a sample group that reflects the population at large. (Well, a horticulturally-interested subset of that population at large.)

I get adults who will come in and meekly ask where they are “supposed to” sit. Oft times these are older adults, who I am assuming are defaulting to some childhood paradigm of Being The Good Student. It’s interesting to see if they find being told, “You may sit where-ever you want!” to be a liberating or momentarily disconcerting. (The side-to-side ranks of tables do not easily lend themselves to a someone who is mentally defaulting to traditional school desks lined up in front-to-back rows.)

I like to set out the handouts on the tables before class starts. This helps prevent me from forgetting some of the parts, and also helps prevent that confused flurry that results from handing out stacks of paper to the people at front and letting each person in the crowd try to figure out how things should be passed back. (The students in my classes never sit together in a solid cluster, so the paper-passing is not the simple conveyer-belt effect one might expect to see.)

Having the handouts out ahead of time also serves another utility for me in that it gives me some measure of control over the attendee scatter. Generally I don’t care where people sit, but sometimes I am given large lecture rooms that seat 120 when I only have 10 students. If the students follow the diffusion typical of dining areas and libraries, they would be all over the place, which is a strain on my vocal cords when I am going to be talking for two hours. So when someone comes in and doesn’t sit at a place that already has handouts, I tell them, “You’ll need some handouts. You can sit where-ever you want, but it’s easier if I don’t have to holler to the back of the room, as I don’t have a microphone.” Once in a while I will have someone who feels the need for more personal space and sits a few rows back from the last person. That’s okay with me; we don’t need to be in a huddle.

I also tell my students, “If you need to get up and move around during that class because of a back problem or if you’re just hyperactive, that’s okay. I shouldn’t get to be the only one who’s pacing around!”

I also get distressed students. I get young moms who are desperately hoping they can get through large chunks of the class without having to take a fussy baby or rambunctious toddler out into the hallway. I get doctors and the relatives of patients who have to suddenly depart at a pager call. I get students who arrive nearly half an hour late because they may have ADD and almost forgot that they had a class today, or who may have some level of geographic agnosia and had to ask half a dozen people on campus how to get to the building, hallway, and classroom. I get students who come defensively clutching notepads and multiples of pens because they are worried about having to take notes and then being tested, even though this is an ungraded class without exams. All these students need reassuring that I am not going to be upset at them, and that I am not grading or judging them, but rather that I am here to help them.

Although the individual class topics are about specific kinds of gardens, describing suitable plants and methods for the category is only my proximate goal. My ultimate goal is to answer the specific questions that each student has brought with them. I want my students to feel that they have received whatever it was that they came to my class to get. This is tricky when they are not even consciously aware of what that is! But it is important that they be able to identify their needs, and then to have those addressed. That way they will feel that they have spent the two hours in a satisfying manner, and I will be able to both adjust and keep the focus of my classes on what the students need and want. I am not making my classes to follow what I think they “should” need.

Because I am supposed to take roll, I ask everyone to tell me their name (I run on the theory that no one mispronounces their own name!), and to share with the class what in particular they are needing to know that day. This question gets easier for the students to answer after the first few replies gets people thinking. As the students list topics, I mention if they are already addressed in what I’ve prepared or I will write myself a word or two on the board to jog my ADHD brain and make sure that I answer them in the appropriate context. All the while, I am mentally adjusting my delivery according to this feedback.

This exercise works well on several fronts. It’s a bit of an ice-breaker, and makes people feel more relaxed about asking questions. The newbies are relieved to hear that other people have the same problems and questions they do, and are less reluctant to speak up. Sometimes the students already know what they want to do and just want someone to affirm that Yes, it’s your yard, and it’s okay to rip up a shrub you don’t like! This exercise is also especially good for those subdued Good Students who are not used to being “allowed” to have their own opinions about what they want or need to learn, and then advocating to have those needs met.

My job description is officially about teaching horticulture, yet in that there is a surprising amount of passing-along of acceptance and self-advocacy.

5 Comments

Centenary Retrospective

11 February 2007 at 21:04 (ADD/ADHD, Advocacy, Auditory Processing Disorder, Autism/Asperger's, College/University, Communication, Coping strategies, Epidemiology, Eye contact, Humor/ Fun Stuff, Inclusiveness, inertia, Injustice, Learning Disabilities, Learning styles, Medical Quackery, Migraine, Paradigms, Parenting, Personal change, Prosopagnosia, Pseudoscience, Retrospective, Special Education, Stress, Teaching/Tutoring)

“This process of the good life is not, I am convinced, a life for the faint-hearted. It involves the stretching and growing of becoming more and more of one’s potentialities. It involves the courage to be. It means launching oneself fully into the stream of life.”
~ Carl Rogers

Wow. The other day I was looking at my blog stats, and it said that I had 22,000 hits. I have also recently written my 100th post since June; that’s close to thrice a week, for the mathematically disinclined. So I thought I would take a step back and review what has gone by, to see what kinds of topical trends emerge, and pull up some of what I think are the better posts, for those of you who are newer visitors.

Bloggers are usually loquacious and opinionated, a description I do not fail to meet. But why do I blog? Some bloggers just natter about their lives, others blog as an outlet for kvetching, some are pushing a specific agenda, and still others like to analyse what they see. I do a little of all the above, but mostly I like to analyse. I am less concerned about persuading you than I am about giving you something to think about. After all, if we all believed the same things, the dialogues would get pretty dull!

Now that there is data from which to draw a pattern, what kinds of things do I blog about? In a way it is hard to sort posts into single categories, because topically there is an n-dimensional hypervolume of intersecting sets. But as an approach, I like to explore themes from personal experience or news events, and also from philosophical perspectives. I feel that philosophy loses some of its significance without grounding it in the phenomenal fields of people’s lives. And telling stories of lives without examining the what and wherefore of those events falls short of the ultimate value of storytelling: revealing the patterns in human relations, and learning from them.

Some of the greater categories revolve around education, from both student and instructor perspectives, and they revolve around the politics of disability and advocacy. In contrast, there are some themes that connect those categories. One of the most important themes is taking the traditional understandings of how social systems work, and taking those apart to reveal very different perspectives on what is happening.

These systems include how we communicate, such as when the language of “choice” is really just a distractor, or doublespeak meant to transfer the apparent (symbolic) power to the one person who in actuality has little power over the situation. These systems also include power paradigms, including how we “help” people, how people miss the mark when trying to create “inclusiveness”, and why pity is such a evil force because it creates distance between people. (There is no need to congratulate me for having “bravely overcome” the insults and artificial obstacles that people put in my way.)

I also look at how the assumptions we make determine how we define groups of people, from the way that we create diagnostic labels, to the sometimes-absurdities of “person-first language”, and concepts of “tolerance”.

In the end, we don’t need better ways of “beating” the system, because we are all part of the system, and the beatings must stop. (They haven’t improved morale yet.) What we need are ways of overhauling the system by sidestepping these terrible games and introducing different ways of working together.

Our perceptions of the world influence how we act, including how we view and understand others. Sometimes people mistake better identification or newer kinds of identification with “epidemics” of autism, AD/HD et cetera. But I bet if we’d had these kinds of identifiers decades ago, a lot more of us would have been better understood. Hyperactive kids are kind of hard to miss, even those who otherwise do not misbehave. (You wouldn’t believe how many ways there are to sit inappropriately!) More boys than girls are diagnosed, but I have to wonder if that isn’t due more to diagnostic criteria than actual prevalence rate. Why didn’t we see kids with these kinds of “needs” in previous decades? Partly because some of those kids didn’t even go to regular schools — they were kept at home or in institutions. Those who did go to regular schools just had to struggle along. They rarely had IEPs and such because their parents didn’t – couldn’t – ask for services that simply did not exist.

When we make these changes in understanding systems and in our perceptions, they can be outwardly expressed by seeking to become a better advocates. Being able to create a new rôle for one’s self includes being able to learn about the various rôles that others have played. (But just try to find sources on disability studies at the local bookstore!) Advocacy requires overcoming inertia and moving into commitment, and moving into commitment and inclusiveness. We also have to be able to recognise our own sources of ability and power, especially if we’ve been convinced otherwise.

Advocacy is complex, and the concerns of parents for the futures of their disabled children is an important part of that. Unfortunately, people whine about how hard it is to have an autistic child, or any kind of exceptional child. All too often there are terrible news reports about parents who have killed their handicapped or autistic children because they were such a horrid burden. Even more horrifying is when the press perspective or quotes are full of sympathy for the murderer because killing your own child is “understandable” because a person can’t help but be insanely stressed from dealing with the child’s abnormality.

It’s hardly not a new trend. But this millennia-old attitude does a terrible disservice to disabled people everywhere to be cast as either devils or angels. It is dehumanizing, and removes us from our humanity, and thus our basic human rights. In light of the fact that many things have a genetic basis, then hating disabilities in our children involves a curious kind of denial and self-loathing.

Distraught parents also need to understand that there is a difference between getting cured and being healed. The unresolved grief leaves parents susceptible to errors of judgment, and these well-intended but scientifically ignorant people who buy into these things are being duped by charlatans, sometimes with loss of life as well as with great monetary expense. Then the problem is propagated because those well-intended but scientifically ignorant people become meme agents, earnestly spreading the false gospel. Meanwhile, the rest of us are left to weed out the “Astroturf” of faux grass-roots efforts.

Advocacy efforts include those in our schools, and involve administrators, educators, parents, and the students themselves. Sometimes teachers and parents worry about school accommodations because they fear it will leave the students unready for when they have to venture into the “real world”. Or, by misunderstanding the differences between equity, equality and need, teachers fear that giving accommodations “wouldn’t be fair” to the other students.

Parenting our students with learning difficulties is not easy – the traditional methods do not work, which is often why the students end up in “special” education. In turn, the students also get frustrated, and attempts to deal with the unmotivated student can sometimes create further problems. We also have to be careful to distinguish between challenging our students, and just making things more difficult for them. Distinguishing between cause and effect in misbehaviour is important – we need to address the causes to resolve problems.

The teaching end of things can also be rife with issues, and college professors can sometimes fall prey to pedagogical myths. Equally absurd is how learning difficulties are often not recognized until the student has been failing or near-failing for a while, thus allowing the student to get further behind and more entrenched in negative mind-sets. On the flip side, we identify exceptionality by contrasting it to what’s common for the group, or by how well a person functions. But what if our sampling group is far from average, or if the environment is less disabling?

Tutoring and teaching is another means of engaging in advocacy, and one of the best means I have is to share with my students the tools for how they can solve new kinds of problems in the future, for themselves and by themselves. It also gives me the opportunity to constantly learn from my students. During this co-educational process, we often need to figure out where in the learning process they are getting stuck, then come up with different ways of helping them learn new information, and different methods for studying. Sometimes the educational changes we make can be as simple as the way a test is typed up, making it more accessible to all the students. The way the audio-visual equipment is set up also makes a significant difference, including the kinds of computer monitors and lighting used. As a tool for engaging your students’ attention, novelty can be a big help. It can also backfire in unexpected ways…

On the more personal scale, I’m always seeking better ways of dealing with my own challenges of “Executive Functioning”, like dealing with all the stuff, stuff, stuff that piles up, losing something in the Dreaded Safe Place, coping with the inertia of task paralysis, or just getting “stuck” when the Plan B falls apart or I unexpectedly get engrossed in something. In worse cases, this means pulling myself out of an awful case of the Betweens, which condition you won’t find listed in any manual, but one that any ADD or autistic person will surely recognise. Regardless, it still helps to remember that strategies for compensating are just that – and that when there’s too much load on the system, those strategies won’t all succeed. That makes it difficult for me, but sometimes others’ lack of understanding is the greater problem.

When I sat and contemplated my place in the grand scheme of things, I found myself wondering just how it was that I could be “doing things the wrong way” and yet still be producing the right results. Were the processes really as important as the results? Doing things “normally” is very important to the general public. People with a wide variety of differences go to extreme effort trying to “pass for normal”, but this can be perilous. Some parents spend great effort to ensure their autistic children learn how to do “good eye contact”, but this may be a poor goal for some unexpected reasons. People can get hung up on developmental timetables, or they worry and wonder why their child likes to spend lots of time lining things up (it’s a good thing, really).

Adults can come up with some pretty off-the-wall assumptions about what is, or is not, going on in a child’s head; we cannot always assign mental processes to the results we see. Then there’s the situations that an earnest-yet-clueless ADHD or Aspie kid can find themselves in, such as failing to cheat. The really scary part is how these children who have difficulties socialising with their peers will fall prey to bullying and abuse, and general depression. Then we grow up into adults, and there’s the whole sticky territory of trying to make Small Talk, and the repercussions of just having a different sense of humor.

On the lighter end, a few posts are just for fun; about once a month there’s a “Recess”. Recess means we take a break and play – it’s important to do that once in a while. During dinner our family discusses why “resistance is fruitile”, and how to be “underly pedantic”. Meanwhile, I have fun with repeating words, and enjoy taking photographs of improbable things.

My thanks to you for stopping by, and please to leave comments!

andrea

3 Comments

Building A Character

8 February 2007 at 20:35 (Advocacy, Attribution Errors, Parenting, Teaching/Tutoring)

At 45, I can now claim to being somewhere in that amorphous zone of “middle-aged” where one is no longer the puppy-faced young adult, but hasn’t quite slipped over to the realm of the white-haired elders. By this point I have had enough “character-building experiences” to go from Having Character to at times Being A Character.

Character-building experiences are usually the sorts of events that push you to go beyond your usual boundaries. Sometimes they are single events that require extreme effort or pushing past fears, and sometimes they are ongoing events that require tenacity and adaptability. In any case, the “character-building” part means that you have expanded your positive self-image, and realise that you can do more than you thought you could, and that you can be resolute in your efforts in future difficulties.

Not all character-building experiences are heroic in scale; some of them come from periods of quiet desperation where the efforts are on the inside. Other people cannot see the amount of work required in the soul-searching, and overcoming the wavering to just give up, but that hardly negates the importance of the experience, and the sheer amount of bravery it involved.

Many people misunderstand what is meant by “bravery”. Being brave does not mean that you aren’t scared. Rather, being brave means that you do what you need to do, even when you are scared.

However, not all “adversity” is the same. Teaching and parenting involves providing people with tasks that are a bit challenging, but not beyond their abilities. It’s our job to help teach them the tools they need, and to scaffold them up to the next level. If we give them tasks that are way beyond their abilities or dump them into situations without the right tools or guidance, then we are setting them up for a lot of failures.

There’s also a big difference between challenging someone, and simply making things unnecessarily difficult for them. I’ve had more than my fill of the latter, thank you. (Clue: they don’t build character, they just make me annoyed!)

Making things unnecessarily hard often involves adding problems that are really not needed, and have no direct bearing on the ultimate purpose of the task at hand. Making a child learn how to tie shoelaces in order to participate in sports is an example of this. Although a player may need to wear a uniform or protective equipment, being able to tie shoelaces should not be a stumbling block to the benefits of sporting activities, such as getting exercise, having fun, learning to work with team members, and being a part of a group that shares goals and experiences.

Another example would be grading a poster done for a school assignment on penmanship in addition to how well the content of the poster fulfilled the requirements for factual presentation and layout. It’s much more sensible to let students type out their labels and descriptions, rather than let them get frustrated over their slowness or difficulty in handwriting.

When we go from making things challenging to merely making things difficult, we don’t help people expand their positive self-image. Instead, we create situations that too easily add more to the burden of negative self-image. Here the student or child does not learn what we set out to teach.

What we learn from the “school of hard knocks” depends very much upon what we bring with ourselves in the way of skills and attitudes. But in any regard, my goals do not include teaching people that life’s a bitch and people are bastards, even if those are sometimes true.

I’ve yet to meet anyone who has not had enough of those kinds of experiences in their life. And everyone I have met has needed more of the kinds of experiences that help them learn how to overcome their own self-doubts and how to deal with problems in life.

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Running With the Red Queen

3 February 2007 at 22:01 (ADD/ADHD, Auditory Processing Disorder, Autism/Asperger's, Coping strategies, Hyperacussis, Inclusiveness, Mathematics And Statistics, Migraine, Paradigms, Stress, Tinnitus, Tourette's / tics)

Everyone in life has to compensate in some manner or another, because no one excels at everything. If you are not mechanically inclined, you take your car to a shop to get the oil changed, and you call a plumber to fix leaks or replace worn faucets. If you’re not comfortable with arithmetic calculations, you have a tax specialist do your annual return, and you arrange for automatic payroll deposits and bill payments with your bank. These are ways that ordinary people deal with ordinary difficulties, and no one thinks any less of them. In fact, the economy depends upon people’s interdependency — earning your living doing things for others is important to the Gross National Product, is important to a town’s sense of community, and is important to a person’s self-worth from feeling useful.

It is curious that people who have others do everyday things for them because they are rich are envied, whereas people who have others do everyday things for them because they are unable to do them are looked down upon. People with ability sets that are different than the “average” person’s run into problems because they are being “inappropriately incompetent”. Some of those “should be able to” things are related to sex-rôle stereotypes: a man should be able to fix a leaky faucet, a woman should be able to sew her own shirts. Among more traditional or conservative populations, a person is not faulted if they are incompetent at a skill that is reserved for the other gender. However, when someone cannot do something that is expected of everyone, or cannot do it well, or cannot do it consistently, they are then open to derision.

The Austrian psychologist Alfred Adler noted how people compensated and even over-compensated as ways of dealing with perceived incompetence and avoiding feelings of inferiority. Not all “incompetences” really are gross difficulties — they may merely be assigned as such by others around us.

I’ve mentioned before that my life is a mass of compensatory strategies. I compensate for auditory processing problems, and the tinnitus that increases the background noise problem. I compensate for prosopagnosia (difficulties recognising people from their faces). I compensate for all those organisational, time-sense, and executive-functioning issues related to ADHD and Asperger’s (planning, executing tasks including the getting-past-the-inertia stages, self-monitoring). I compensate for the hyperacusis, and my general clumsiness, tics and stuttering, and migraines. Generally speaking I compensate fairly well. So much so that most people don’t realise that I am working much harder to achieve nearly as well. I “pass for normal” most days, so people can’t understand why I’m having problems when I’m ill or stressed or simply trying to compensate for too many things simultaneously.

Adler would probably say that I over-compensate.

I had to go through Driver’s Education class twice to acquire the necessary motor skills. I did eventually learn to drive stick shift (manual transmission) and have even driven in both the UK and US. The day that I parallel-parked in front of my high school to request a transcript to be sent to a college was indeed a threshold moment in my life. (Even the transcript part was a highlight, as assaying higher education was uncertain due to my previous academic difficulties.) My husband once asked me, “What, can’t you drive and talk at the same time?” and I did not feel that it was unreasonable to answer, “No, I can’t.” I cannot drive a stick shift vehicle through city traffic, trying to find a business I had never been to, and talk on a cell phone. (I have Auditory Processing Disorder and he has a severe hearing loss — talking on the phone can be inherently confusing in its own right.)

There are classes when I struggle to keep my attention focused on the instructor, and also to understand what they are saying, especially if the classroom is mechanically noisy, or if the instructor mumbles or talks while facing the whiteboard or doesn’t present information in a clearly-defined format or use supplementary visuals. Because I am very good at being able to distinguish the important material in an educational presentation and record those details in sensible paragraphs, I have been a note-taker for dysgraphic or hearing-impaired students. But I have only been able to do that in those subjects where I was already familiar with most of the information — I could not be a note-taker for others if I was still learning all the vocabulary and concepts myself.

Mathematics presents special difficulties for me because of problems with sequencing, slow working speed, and occasional transpositions. It took me four years to memorise my multiplication tables, and I have flunked a number of tests over the years, and nearly had to take a class over. In university I dropped a course that I was getting D or F grades, to try it again later on to get C, B or A grades, and did that with more than one course. It was slow, difficult work slogging through college algebra, trigonometry, calculus, statistics, physics, and four semesters of chemistry. One of my current jobs is working as a special education paraprofessional. I help in the science classroom, but my main assignment is in the math classroom. The extremely ironic thing is that not only am I helping students with mathematics, but also that I am doing so in the very same school I attended years ago, in the same classrooms where I had once sat flunking math tests. (My first work week was not only difficult from the prosopagnosia-aggravated new-job disorientation, but also from “post-traumatic school disorder” as I had ongoing flashbacks.)

I actually did flunk a semester of secondary English and had to re-take that portion of the course. I have also written a book and hundreds of articles (on a variety of subjects) for magazines and newspapers. I tutor college students in composition classes.

Given these examples, it might sound as though my difficulties were all in the past, and have been made up for by my recent successes. That isn’t quite true. What I have done is learned how to work around some kinds of difficulties. With others I simply have to work harder to puzzle through consciously to figure out those things that most people do easily and without conscious effort. Some days I feel like Alice Through the Looking Glass, running as fast as I can just to stay in place.

The problem with over-compensation is that although I have at times felt that I had vanquished my personal demons of incompetence by having overcome various failures with landmark achievements, those successes do not mean that I cannot or will not have future problems! What helped more than those moments of personal glory (exhilarating though they were, despite lacking exciting soundtrack music), has been finding out why I have problems, how those problems manifest in my daily life, and how to work with them. Self-understanding improves self-image because it gives me tools for those ongoing and future difficulties. Self-understanding means that the next time I fail something (not “if” but “when”, because everyone does fail periodically), I will have the necessary cognitive and emotional tools to handle the disappointment. I will be able to handle defeat graciously, because it is a failure of task-specific achievement, not moral failure. Furthermore, I can extend that same grace to others, because we all have such problems, even though the details differ.

Out in our various communities, we need to be able to not only acknowledge that Yes, not everyone can do the same thing, but also destigmatise that fact. One of the tragedies with the current paradigms in the helping professions is the disdain and depersonalisation from “care-givers” to that people who need personal attendant services or other forms of assistance. We can’t all do the same things. Needing someone to change your diaper should be no more stigmatising than needing someone to change the oil in your car. There’s really something sick about people who feel superior those whom they serve — there’s an element of self-loathing transferred from one’s self to one’s job to the client. It is overcompensation of the soul-eating malicious sort. Service to others is about sharing strengths, not about bolstering one’s damaged self-worth at the expense of others’.

We should not have to overwork ourselves to over-compensate just to earn other’s acceptance.

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