On Behavioural Observations and Assumptions

29 July 2006 at 21:04 (Attribution Errors, DSM, Epidemiology, Insects & Arachnids, Invisible disabilities, Non-verbal communication)

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?

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A, B, C, D and F

27 July 2006 at 16:39 (ADD/ADHD, Attribution Errors, Auditory Processing Disorder, Autism/Asperger's, College/University, Invisible disabilities, Learning Disabilities, Migraine, Special Education, Stress, Tourette's / tics)

“I, myself, was always recognized . . . as the “slow one” in the family. It was quite true, and I knew it and accepted it. Writing and spelling were always terribly difficult for me. My letters were without originality. I was . . . an extraordinarily bad speller and have remained so until this day.”
~Agatha Christie

“I was, on the whole, considerably discouraged by my school days. It was not pleasant to feel oneself so completely outclassed and left behind at the beginning of the race.”
~Sir Winston Churchill

How bad does it have to get?

At what point does a student’s difficulties with schoolwork demonstrate that they are having significant problems, and therefore need help?

Should a student have to fail classes before someone realizes or decides that there is a problem?

Why do we rely on failing – or near-failing – to signal academic difficulties? By the time a student has slid that perilously low in achievement, they have been struggling for a long while, and are getting further and further behind, thus making it even more difficult to catch up and succeed.

Furthermore, all that time spent struggling and generally not understanding why they are having problems, only creates even greater frustration. Stress doesn’t always push students to rally and succeed – too much stress rather, just serves to flatten their spirits.

Being told (directly or indirectly by all sorts of adults and peers) that they are simply “lazy” or “not trying hard enough” or “stupid” or whatever, only serves to further mangle the esteem and create greater frustration. It’s a recipe for depression, for withdrawal, and/or for acting out.

Bright students apply their natural intelligence and create coping strategies around their various difficulties. Oft times this is an unconscious process; it’s sheer adaptation to the world because they are expected to be able to do what everyone else does, and because in many ways, they have to approach tasks differently.

But coping strategies can only compensate so far. When the student is tired, or is sick, or is overwhelmed by other events in life, or is having to spread not enough compensation over too much difficulty, it breaks down. And then the student “suddenly” can’t do what they’ve always been able to do. Teachers, parents and others can’t understand why the student isn’t performing well. It’s easy to make those dread attribution errors: “You just need to focus. You just need to try harder. You just need to pay attention.”

For the student, sometimes they can’t even understand how or why it is that they can do things some days, but not others. Or why they can only sometimes do things well. It seems irrational. It’s easy for the frustrated student to make attribution errors of their own: “The teacher hates me. The work is too hard. The subject is just stupid.”

Students who are both very bright and have learning disabilities or learning difficulties or even marked learning style differences, face a terrible Catch-22. For years they will get by on sheer brains, compensating for their problems in ingenious ways. But eventually the complexity of the subject materials, the increasingly higher taxonomic levels of assessment, and the increasing study load all combine to bog down the effort. (The distractions of adolescence certainly don’t help, either!)

These “twice-exceptional” students may do well, but struggle to achieve what they could do. The learning problems, which affect both the acquisition and demonstration of knowledge, can cancel out the exceptional qualities. What everyone sees, instead of a bright student with learning problems, is just an ordinary student with erratic and scattered abilities.

Once someone finally cues into the fact that there is a problem, it’s the disparity between ability and achievement in test results where the learning problems are diagnosed. But even before that, it’s the erratic results in the grades (even in the same subject!) and the uneven scatter of abilities that should send up flags.

It’s not uncommon for students with learning disabilities to be uneven — the “easy” things may be difficult (such as taking 4+ years to learn multiplication tables) and the more advanced stuff may be easy (e.g. physics or calculus concepts). If people insist that the student “master” the preliminary steps before they can move on, the student will be bored and not reach their academic potential. Bored students can act up, either withdrawing, being class clown to get attention, or getting frustrated and angry.

Even after testing, there can be confusion all around. None of the test results may show a severe problem of any one kind. But we have to remember that problems are cumulative. On good days, various problems may merely be additive; on bad days they can be multiplicative. So a student with some ADHD organizational problems and some Auditory Processing Disorder problems and some Asperger’s socialization problems and some difficulties in reading and some periodic tics and some depression and occasional migraines … doesn’t have any “major” problems. But what that student does have is a major conglomeration of interacting problems. It’s no one thing – it’s everything!

One school person said this student didn’t need an IEP because they were “coping so well”. Drr? the last report card ran the entire gamut of the alphabet, from A through F.

Yeah, right.

How bad does it have to get?

12 Comments

Good Counseling, Bad Counseling

23 July 2006 at 21:01 (Advocacy, Counseling)

Good counseling is kind of like good art, or pornography:  hard to define, but we know it when we see it.

Sadly, a lot of people have more experience with bad counseling or psych care. Bad counseling (Bc) tells clients what their problems are and what the counselor is going to do to or for them to solve that.  At its worst, Bc is disempowering, denies self-advocacy, self-understanding, and self-help, and turns help into a passive process for the client.

The problem with many people working in the “helping professions” is how “helping” is viewed. (Here we’re talking about helping professions as counseling and social work, as opposed to personal attendant staff, which may necessarily be long-term assistance.)  Bad helping is about ensuring the status quo of the client as the dependent recipient of help given by the service provider. Good helping is about making the counselor “unemployed” as it were, of being a temporary resource to the client, rather than a permanent fixture that is necessary to keep a “broken” person working.

Good counseling (Gc) helps the client to determine problems they are facing, and what they need to solve them, and how they can acquire the tools needed to do so.  The counselor works with a person, not for them or to them.  It’s about respecting the client, and presuming competency on the client’s part, including the client as the local expert on their self.

In other words, Gc is empowering. The client needs to have their own power to make decisions.  They need to have resources and information made available to them so they can make their own choices.  Those choices need to be real choices, not dilemmas sold as choices. People need to feel like they are masters of their own fate, and also be able to understand the boundaries of what things they can change.

Clients also need to learn how to be able to reframe how they understand things in a more constructive manner, so they can take the things learned and be able to continue to help themselves later on.  A child’s job is to play, learn and grow, and so is an adult’s.  We all need to continue to learn new skills and approaches throughout our lives as our situations change, and as our abilities to do things also change.  There is no one place in life where one is done learning; it’s an ongoing, lifelong process.  To be able to do this the client needs education, not just in the form of information, but also in the process of making thoughtful decisions with this kind of information.

But to do all that the counselor has to be able to figure out – with the client – not just what the problems are, but also what the client thinks is important:  the things they need to solve, or skills they need to acquire. If something is important to the client, then it’s important!  The counselor should address the subject with them.  People need to be able to make decisions about things that are important to them in their lives.  That’s the inherent difference between Bc and Gc: telling people versus asking them.  A lot of what people need is attentive listening and being taken seriously (for a change).

To be hopeful for a positive outcome, a person needs to feel that they can make a change in their lives, and do so from their own power. The client should then be able to take that sense of power that is created from beneficial change, and be able to share it with others in their communities – the personal empowerment becomes social.  Part of that social empowerment comes from the client being able to earn the respect of others and to be seen as a competent person, rather than as someone stigmatized for being “damaged”.

To do these things, the counselor should be a tool for the client.

And boy is that a change in the power paradigm!

18 Comments

I Miss My Opposable Thumb

20 July 2006 at 21:12 (ADD/ADHD, Attribution Errors, Auditory Processing Disorder, Hyperacussis, Invisible disabilities, Proprioception, Tinnitus)

Don’t get me wrong — I’ve not really lost my entire thumb to accident. I merely knicked a bit off the tip with a kitchen knife. But unlike a mere cut where the skin just has to close back together, this is a small concavity that takes a bit longer to fill in. Because it’s on the tip of my thumb, it’s prone to all sorts of ongoing abuse that would prolong the healing process. So, I have one of those plastic caps taped to my thumb to protect it. And of course I can’t really use my thumb for much bandaged like this.

So like many other things in my own life I had to develop coping strategies to accommodate this temporary disability. I use my index and middle fingers in a pincer grip for holding small things (hooray for doublejointedness). Shoelaces are really tricky this way, but I’ve always asserted that shoelaces are the work of the devil (I was in 3rd grade before I finally mastered them), so I stick to loafers and sandals whenever possible.

Last night I remarked to hubby that my entire life is composed of coping strategies.

I have coping strategies to deal with the ADHD forgetfulness, distractedness, and hyperactivity. We have a baker’s rack near the front door for backpacks and shoes. My necessary pocket stuff is emptied onto a special dish at bedtime, and reloaded the next morning when dressing. I set my medicine bottle on my computer keyboard. I write notes to myself (and others) using a dry-erase marker on the bathroom mirror, as one ends up in the bathroom on a regular basis, it doesn’t get lost like scraps of paper, and I can be sure of seeing them when getting up the next morning. I turn off the oven before removing the food. I have an index card in my shirt pocket where I keep my To Do list and ideas to pursue. I set my car keys atop whatever object I need to take with me.

I have coping strategies to deal with the Auditory Processing Disorder blips where I can’t understand what someone has said to me, and the resultant overtaxing of my short-term memory that makes recalling verbal instructions and lectures so damn difficult. I watch television with the closed captions (subtitles in English) turned on. I take extensive notes when given verbal instructions. I request emails instead of phone calls, printed meeting agendas, and transcripts.

I always have earplugs on hand to turn down the volume a bit in noisy places because of my hyperacussis, and frequently listen to background music to drown out my tinnitus.

I have coping strategies to deal with my faceblindness. Like other prosopagnosics, I rely on accessory features of posture, gait, mannerisms, voice, hairstyle and location to identify people. I also rely upon name tags and prompts by family members and others. When we’re in crowds, I instruct people to wave at me so I can find them again.

I have coping strategies to deal with my clumsiness (although given the continuous succession of bruises and the number of scars I have, apparently insufficiently adequate ones). For years we did not have a coffee table because I crash into furniture too often. I transfer raw eggs with my hand palm-up to let gravity work for me. I pour liquids with the containers over the sink to make spillage cleanup easier. I keep burn ointment on top of the refrigerator instead of in the bathroom medicine chest because I get burned in the kitchen, not the bathroom. I skid the sole of my foot across the top edge of a staircase to find the first step. I do complex hand-and-foot actions sequentially instead of simultaneously. I wear glasses with metal rather than plastic frames, as they bend instead of break. I wear snug clothing to improve my proprioception so I don’t run into furniture as often.

I have coping strategies to deal with my intermittent reading & writing transpositions. Everything has to be proofread. I block off extraneous numeric data with a piece of blank paper so I don’t pick up the wrong number. If I have to write out calculations for students, I ask them to watch me really closely and let me know if I transpose something. (This makes me more human to them, and also makes them watch me like a hawk, thus paying more attention to the lesson!)

All these coping strategies mean that on good days I may even be over-compensating for some things. Overcompensation is something I sometimes do well. Spelling was one of my worst subjects; as an adult I became a newspaper proofreader. I had a speech impediment and occasional stuttering that required speech therapy; I’ve recorded books on tape and now I do a lot of public speaking and get return invitations. (I also get queries about my “accent” because when I’m tired I tend to over-enunciate, producing a sort of Received Pronunciation effect.) I have ADHD but for several years of college I lived in two cities and did four jobs while taking classes. I have APD but have been a note-taker for other students, albeit in classes where I already knew most of the material. Adler would be proud.

There is however an inherent drawback at being so good at developing coping strategies: because I can more-or-less get by most of the time, people can’t tell that I’m having to work twice as hard to do what I do. So when I’m tired and/or sick or otherwise stressed, I don’t do things as well. To be frank, I do poorly. A lot of my coping abilities lie in the fact that I’ve worked to create enabling environments for myself. Take me out of those (for examples, when on trips, or when starting new jobs), and a lot of my strategies fall apart.

Because these are invisible difficulties and disabilities, people don’t understand why I intermittently fail or falter. They can’t understand why an otherwise apparently smart person suddenly does and says apparently stupid things. This means that sometimes people will decide I’m being lazy or rude, or if they don’t know me they will decide that I’m stupid.

In the long run, the attribution errors can be the most disabling thing of all.

2 Comments

Stimulating Topics of Conversation

19 July 2006 at 19:02 (ADD/ADHD, Autism/Asperger's, Behaviour management, Parenting, Stimming)

Today was a long, exhausting day working at summer camp. It was, as some people are wont to say, “a stimmy day”. So that’s the topic of today’s blogging.

One of the complaints I read about on some parenting boards is “the stimming problem”, when a child engages in self-stimulatory behaviours. (No, I don’t mean masturbating, although that could be a stim; we’re referring to finger-fiddly activities, whole body activities like jumping, rocking, spinning, and so on.)

Many people act as though autism is cause of stimming. This isn’t quite true; stereotypical stimming behaviours are associated with autism. Rather, stress is the main cause. Stimming is nothing more than a more focused version of someone else’s “nervous habit”. Various stimming behaviors can be beneficial stress-coping mechanisms, assuming they’re not self-injurious.

We should note that stimming activities are things that EVERYONE does. People smoke, or fiddle with their hair, or stroke mustaches and beards, or spin wedding bands around their fingers, or chew gum, or bite pencils, or repeatedly click ballpoint pens, or fiddle with pocket change, or mangle paperclips, or count rosary beads, or slide necklaces, or play with earrings, or crack knuckles, or doodle on page margins, or stare out the window, or pace, or endlessly swizzle mixed drinks with decorative stirrers … you know, all those stereotypies that neurotypical people engage in.

The only difference is the type of activity. Those previous things are “normal” whereas autistic stimming things are “not-normal”. But how can something be “abnormal” when millions of autistic people do it? Then again, I bet a lot of those so-called “normal” behaviours are done by ADHD people leaking hyperactivity around the edges in a socially-acceptable manner.

I’m prone to “swaying” or rocking from side to side. I’ve been doing it for over forty years. My husband has finally resigned himself to the fact that if I stand and talk for more than a few minutes, I’m likely to start up. (It was camouflaged when I had tots in my arms, but now they’re in high school and college.) I even rock some while teaching and doing presentations (gasp!) and the world hasn’t come to a screeching halt yet. Fifteen-plus years of this and they still send me contracts and invitations. It’s not an issue of “she rocks but she’s a really good speaker” but rather that “she’s a really good speaker and sometimes she rocks”. Come to think of it, not even that. No one has ever mentioned it to me. Maybe no one notices. Or maybe no one cares.

My office chair is a rocking chair. Rocking chairs exist because people like to rock. Even the better sorts of conference room chairs rock. Rocking is soothing. Rock on!

Listening to the same music track repeatedly is a great stim. For the highly distractible ADHD brain, it nicely spackles in some of the attentional inputs, and helps drown out some of the random auditory background, thus enabling better concentration. There must be LOTS of people who like to do this, as many music players have a Repeat function so you can listen to the same track over and over and over and …

Some people try to reduce their child’s stimming through behavioral modification. Unfortunately, this often prevents the person from using their stress-coping mechanism, and thereby increases the sum stress load, which is unhealthy. Likewise suppressing behaviors such as stimming is not going remove the ultimate causality – masking the outward behavioral appearance does not change internal processing. Verily, it can create more difficulties for person by short-circuiting natural learning & stress-management techniques, thus reducing ability to successfully interact with world and others in it.

(And we all know that suppressing the stimming behaviours is not going to eliminate the autism, no matter how “normal” the person acts on the outside. Duh.)

Of course behavioral modification can be used to change problem behaviors; it is something that good parents and teachers do all the time. But smart parents and teachers know that the best way to prevent problem behavior in the long run is to address the cause of the problem. Wise and caring parents and teachers do not blame the child for having problems and stimming, but help the child learn ways of dealing with the daily stresses, and if really necessary, find ways of stimming that are more socially acceptable.

Because you know that stimmy autistic children grow up to be – stimmy autistic adults. And fidgety ADHD children grow up to be fidgety ADHD adults. Next time you’re in a meeting, quietly scatter a bunch of paper clips on the table and watch what everyone does with them!

11 Comments

Trials and Tribulations

14 July 2006 at 22:00 (ADD/ADHD, Auditory Processing Disorder, Autism/Asperger's, Developmental disabilities, DSM, IEPs, Injustice, Meltdowns / Shut-downs, Parenting, Prosopagnosia, Tourette's / tics)

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. Excuse me; that should be the alleged murderers; trials haven’t happened yet for several of these cases.

Holy shit! Parenting is hard. Period. Yeah, there are bad days. Some days you feel like you’ll never get to eat your food at the proper temperature, or go potty or take a shower uninterrupted, or sleep through the night. Some days you feel like you’ll never finish the endless assessments, or learning more about the alphabet soup of ADHD, APD, ASD, TS, DSM, IEP, or attending special school meetings. Some days you feel like you’ll never get through the little chats with the police officer on your doorstep, or the hormonal teenager angst, or the getting homework done and turned in so the grades reflect a little of the smarts behind the scholastic ennui.

Amazingly, this is true regardless of what sorts of kids you end up with.

It’s true that there are some problems with autistic children that one doesn’t have as often with neurotypical children. There are also problems with NT children that one doesn’t often have with ASD children (when was the last time you read a blog by a parent sighing over how their autistic kid wanted to invite two dozen kids for a birthday party at Chuckie Cheez followed by a sleepover?) Different is not worse.

Aspie kid was a “runner” as a toddler. With my faceblindness I have great difficulty finding people in crowds; tracking down a small child that has bolted into the mobs of people at a mall would have been dangerously slow. Thankfully my other kid was four years older and could help me. I ended up having the tot in one of those child-harness & leash setups when we went shopping. People would give me dirty looks because I was a “horrid mommy who put their kid on a leash”. Frankly, I was a concerned mommy who wanted to keep her kid safe, because this child was fast, strong and inclined to dash off when intrigued by something.

There were also meltdowns, which being unaware of autism at the time, were to me simply “being too tired” and/or “having a tantrum”. So I ended up figuring out what the triggers usually were, and finding ways of circumventing those. We also learned how to calm down, and how to recognise when things were starting to get to be Too Much. I also learned the fine art of calmly saying, “Having a temper tantrum is not going to make me change my mind. When you calm down, then we will shop some more.” (I used a lot of If-Then and When-Then constructs when dealing with my toddlers; they could understand the binary constructs, and it helped them make sense of cause and effect.) Of course, passers-by would want to intervene and try to comfort/appease the child or chastise me for having a crying, floor-kicking kid on the grocery aisle floor. I also acquired the other fine art of smiling, nodding, and reassuring them, “It’ll be okay in a minute or two.”

This child also had/has distinct clothing and food preferences. Some relatives called this “picky”. I thought of it as merely having … preferences. I like my clothes or my food a certain way; why wouldn’t anyone else?

Sure everything was all about orcas when younger. Sure made gift-giving easy. Now it’s videogames (shocking, I know). Sure makes gift-giving easy. (Unlike dad, who has neither perseverations nor any particular hobbies; is that just so weird, or what?!)

Different is not worse. It’s just different. Rearing children is going to do major things to your daily life structure, your bank account, your living room furniture, your social life, and so on. That’s real life. Whining because your life isn’t going the way you thought it was going to, or like some kind of posed ideal family scenario from a greeting card, is simply whining.

Meanwhile, learn how to have fun with your children. Figure out how they learn, as unique individuals. Experience how they share their thoughts and feelings, as unique individuals. Take photographs, collect stories about funny family moments, and build up that group identity of “this is the sort of stuff that makes our family because we’re all part of it”.

DON’T EVER wait until “things get back to normal” or “when this is all over” to do anything. There is no “normal”. This is it. This is life. Fun is something you make, not something that happens to you. Families is who you are, not something you wish would be. Love each other, live it, enjoy it.

(And bake cookies, because cold milk and warm cookies with your fingerprints pressed into the tops are great family-glue.)

14 Comments

Recess: Fruitful Dinner Discussion

12 July 2006 at 22:05 (Geeks, Humor/ Fun Stuff)

Recess means we take a break and play. It’s important to do that once in a while.

I was at the market getting dinner groceries when I saw a display of these, and had to buy one for the family:
(scroll down for comments)

Borg melon

Daughter intoned, “You will be assimilated. Resistance is fruitile.”

Her beau added, “They grew it on a collective.”

(What can I say? We’re a pretty geeky bunch.)

10 Comments

Cognitive Bias, Patterns & Pseudoscience

10 July 2006 at 19:40 (Anti-Quackery, Attribution Errors, Cognitive biases, Critical Thinking, Logical fallacies, Mathematics And Statistics, Medical Quackery, Pareidolia)

(It’s been a long, long day. So here’s an only-slightly-used, gently-recycled essay, but with an Brand New! hyperlink for your enjoyment. Bon appétit!)

“It has been said that man is a rational animal. All my life I have been searching for evidence which could support this.”
~ Bertrand Russell

Here’s our new word for the day: pareidolia. It comes from the Greek, para = almost and eidos = form. The word itself originates in psychology, and refers to that cognitive process that results in people seeing images (often faces) that aren’t really there: the man or rabbit in the moon, canals or face on Mars, faces of holy people in tortillas or stains in plaster … It also sometimes refers to hearing things that aren’t really there in random background noise (Electronic Voice Phenomena: EVP). Pareidolia is what makes Rorschach inkblot tests possible (attribution errors are what make Rorschach tests fairly unreliable).

The human brain is “wired” to see patterns, especially those of faces. Creating and perceiving patterns is what allows all animals to operate more efficiently in their environments. You need to be able to quickly find your food sources, your mates, your offspring, and the predators in the busy matrices of sensory inputs. Camouflage relies upon being able to become part of a pattern, and therefore less recognizable. Aposematic warning coloration, such as black and yellow wasps, does the reverse, by creating a specific kind of pattern that stands out.

Sometimes people subconsciously assign patterns and meanings to things, even though they don’t intend to do so. This is why we have double-blind studies, so the people who are collecting the data don’t unconsciously assign results to the treatment replications by increasing or suppressing or noticing effects in some trial subjects. Prometheus has a lovely blogpost about this: The Seven Most Common Thinking Errors of Highly Amusing Quacks and Pseudoscientists (Part 3). (This series of his just gets better and better!)

Seeing patterns can lead to weird cognitive biases and fallacies, like the clustering illusion, where meanings are falsely assigned to chunks of information. The fact is that clusters or strings or short repeats of things will naturally happen in random spatial or temporal collections of objects or events. A lot of people think that “random” means these won’t happen (which makes assigning correct answers for multiple choice tests an interesting process; students get suspicious if they notice too much of a pattern and then start out-guessing their correct answers to either fit or break the perceived pattern).

Sometimes the reverse can happen, where instead of seeing patterns in data, people put some of the data into patterns. This is known as the Texas Sharpshooter Fallacy: a cowboy randomly riddles the side of a barn with bullets, and then draws a target where there is a cluster of bullet holes. People will perceive a pattern of events, and then assume that there is a common causal factor to those, because of the perceived pattern. This is why statistics was invented – to suss out if there is a pattern, and how likely it is. Mathematics takes the cognitive kinks out of the data so the analysis is objective, rather than subjective.

Statistics also gives research rules about how best to proceed in experiments, to avoid various errors. One of those is deciding what kinds of analyses will be used for the type of data set that is produced by the experimental design. Note that this is decided beforehand! The reason for that is because people want to see patterns, and (even unconsciously) researchers want to see results. The purpose of testing for a null hypothesis is to try to disprove the given hypothesis, to avoid these kinds of issues.

It doesn’t matter how noble your intentions are – wrong results are still wrong results, no matter how they are achieved, or to what purpose.

To look at the data and then start picking through it for patterns, (“massaging the data” or “datamining”) is inappropriate for these very reasons. The greatest problem with doing analyses retroactively is that one can end up fitting the data to their pet theory, rather than testing the theory with the data. Mark Chu-Carroll’s post on the Geiers’ crappy and self-serving data “analysis” is an elegant dissection of how this kind of gross error is done. (Note that is MCC’s old blog address; his current blog is here at ScienceBlogs.)

Doing this intentionally is not only bad statistics, it’s bad science as well. The results come from anecdotes or data sets that are incomplete or obtained inaccurately. Correlations that may or may not exist are seen as having a common causality that also may or may not exist. It’s pick-and-choose and drawing erroneous, unsupported conclusions. People want to see patterns, and do. Even worse, they create patterns and results.

The seriously bad thing is that con artists and purveyors of various kinds of pseudoscience do this a lot. The intent is to deceive or mislead in order to sell something (ideas or objects or methods).

The people who then buy into these things then think they are seeing treatment results because they want to see them. Take this secret herbal cold medication, and your cold will be cured in just seven days! (Amazingly, one will get over a cold in a week anyway.) Give your child this treatment and they will be able to learn and develop normally! (Amazingly, children will learn and develop as they get older, for all not everyone follows the same timelines – developmental charts are population averages.)

Meanwhile, the 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.

Economists will tell you that the cost of something is also what you did/could not buy, and when time and money is spent on false promises, it deprives everyone involved of the opportunity to pursue truly beneficial treatments.

Then the problem is propagated because those well-intended but scientifically ignorant people become meme agents, earnestly spreading the false gospel …

4 Comments

Where Are All of Us?

8 July 2006 at 9:34 (ADD/ADHD, Autism/Asperger's, Coping strategies, Epidemiology, Learning Disabilities)

Are there really more males than females with autism/Asperger’s and AD/HD?

Reading the diagnostic literature, one finds references to the “fact” that there are more autistic boys than girls. There certainly seem to be more hyperactive, inattentive boys diagnosed (and consequently treated with medication) than there are girls.

Curiously, when one reads through bulletin board sites for autistics/Asperger’s, there seems to be a pretty evenly balanced gender ratio (as far as one can discern from screen names or profiles). Looking at the “autiebiographies” available, the male to female author ratio is fairly even. However, such reviews are not necessarily going to be a representative sampling of a population. Publishing houses require authors to be able to present novel perspectives (pardon the pun), to have good written verbal skills, and may try to present a balance of authors. A bulletin board is naturally self-selecting for individuals who have computer access, a comfortable grasp on the language used, a willingness to identify one’s self as belonging there, plus just as importantly, an interest in socializing through Web media. The first two factors are universal requirements for access, but the last one is distinctive for a different reason.

Females are generally perceived by society as being more socially -oriented than are males, or more interested in people than in things, hence the “Men are from Mars, Women are from Venus” analogy or Dr. Simon Baron-Cohen’s recent writings on male/female differences. They are also perceived as having higher verbal skills than do males, or at least girls develop higher levels of verbal skills at younger ages than do boys. There is the possibility that even if women are outnumbered in these populations, they are more likely to crave socialization and be more adept at, or feel more comfortable with, socializing through the written medium of a Web board. But does the sex ratio evinced reflect this self-selection, or is it a good sampling and therefore indicative of the overall population?

Currently more males than females are diagnosed with autism and AD/HD, at a general rate of around 4:1. The causes of autism are proving to be complex; autism is not a single, simple thing, but varies in collative properties by individual. Thus far it is indicated to be polygenic and also affected by factors in embryonic development as well, as twins do not even develop similarly. It would not surprise anyone to find that males are more likely to be autistic; the susceptibility derived from only having one X chromosome is seen in a variety of genetic factors.

These off-repeated ratios are likely not true prevalence rates, but rather reflects diagnostic rates. Both autism and AD/HD are diagnosed by sets of behaviours that differ from the norm, and thus attract attention of those people who would make initial remarks (parents, teachers) leading to those individuals being brought to the attention of those who would make final assessments (pædiatricians, psychiatrists, psychologists).

Females often do not “present” in the same manner that males do. This is rather a reflection of the fact that the diagnostic criteria were based more upon behaviour of males from the sample populations than upon a gender-balanced population samples. Currently the psych field is abuzz with discussion that girls are being missed for ADD diagnoses because they present more in the Inattentive qualities. The quiet, daydreaming girl staring out the window is not a problem for her school teacher, so there is less concern about her erratic scholastic achievements. (After all, maybe it’s just a “blonde thing” /sarcasm.)

Part of autism is inherent in the “wiring” of the human brain, and part of autism is a social construct. That Kanner and Asperger both met with unusual children who gave them the impetus to dually conceive of the concept of autism at the same time in history, may have more to do with the fact that a public awareness of psychology, the development of social and scholastic statistical norms that created specific definition of abnormal, plus the evolving field of child psychology, more than any sudden incidence of autistics.

Likewise the concept of “minimal brain dysfunction” that has evolved to its current status of AD/HD reflects changing understanding, including distinctions between hyperactive, inattentive and combined forms. As mentioned, a hyperactive boy is simply more noticeable in a classroom setting than is a daydreaming girl, although they may have very similar difficulties with their school work, personal and social lives, and ultimately their adult worlds of work.

Amazingly, kids with AD/HD grow up to be adults with AD/HD, although the problems of the adult can be less “noticeable” because adults can develop coping mechanisms (including the acquisition of helpful spouses who eventually become very frustrated if no one realises what’s really going on). Likewise, the addition of Asperger’s to the DSM and ICD criteria reflects a greater understanding of the breadth of autistic expression, and the number of adults that would now qualify for an AS diagnosis is far greater than those who actually have such a diagnosis, simply because it was not available as a diagnosis during the school years when such things are often diagnosed. The lack of available diagnoses is not the same thing as the lack of diagnosable individuals existing.

Just as autistics sometimes face the gross error of being misdiagnosed with schizophrenia, mental retardation or other disorders, females face the similar problem of being misdiagnosed with personality disorders. The complementary dilemma to Misdiagnoses are the Missed Diagnoses, those girls and women who continue to struggle through life never understanding why they feel so different and why they find many things difficult. For these people the secondary problems with relationships, schooling and work result in lifelong stress and all too frequently in depression.

To better understand how autism or AD/HD affects the abilities of females, we need to better understand how to recognize them and to be able to see those cues when they are expressed in girls and women.

9 Comments

What’s the Use?

6 July 2006 at 22:28 (Critical Thinking, Inclusiveness, Paradigms, Special Education)

Long day; short post. Quite likely my shortest post ever.

Does everything and everyone have to have a “purpose” in life? ‘Twould seem so, according to the Bible. However, “purpose” is an anthropocentric point of view: everything is made for the use of people, including other people.

Sometimes the benefits (not “uses”, but benefits) of having different people around are not obvious. Those odd people don’t fit the neat cogs of traditional social machinery, and society has had to invent new mechanisms to “deal with” the misfits and to isolate them from the social workings.

Thus for example, we get “special education” programs to make up for the fact that the current educational system doesn’t work all that well. Being a heretic, I don’t believe that an educational system that enables students to learn should have to be “special”. (I also don’t believe in the segregation.)
What is really needed is the understanding that it is not the people, but the social machinery which is lacking something that creates this mis-fitting, and therefore, the misfit.

In the way that travel enables us to understand what our home geography and culture is like (by way of comparison and contrast to that which is so familiar as to be unseen), the misfit enables society to learn more. This happens indirectly by illustrating how the social machinery is lacking. Furthermore, the social machinery is often lacking for a lot of people, not just those for whom it’s such a poor fit as to be outright unusable.

This informing also happens directly by the communications we get from all the misfits. Of course, it’s not true communication unless there are those willing to listen, and to take the messages seriously.

People do not have to be equivalent to be equal in their inherent value.

2 Comments

Is That Ringing Sound … the one in my ears, or cash registers?

5 July 2006 at 5:47 (ADD/ADHD, Anti-Quackery, Autism/Asperger's, Hyperacussis, Medical Quackery, Migraine, Tinnitus, Tourette's / tics)

Every now and then I will buzz around the Web to see what the latest absurdities come ducking out of the quack pond. There are the inevitable villains that “cause” AD/HD or autism: mercury, food colourings, French fries … I shit thee not! Maybe it’s that theoretical autistic lack of imagination, because I never, never would have associated the consumption of French fries with Asperger’s. <Blogger falls of rocking chair laughing> I won’t give these fools the page hits by linking to them; it’s at autismfries dot com.

Meanwhile, back at the ranch…

Then there are the oddities in my life that make life less-than-thrilling, such as the tinnitus, hyperacussis, tics, and migraines. The personal testimonial story at tinnituscure dot org is probably one of the longest I have yet to read. They have a homeopathic remedy that “heals damaged nerve endings in the inner ear” and another one that will “actively stimulate the hypothalamus”. Gee, if they can restore damaged nerves, maybe my hubby will no longer need his hearing aids, and then I won’t have to listen to the occasional feedback squeal, either.

Apparently an “integrated” facial massage at Integrative Manual Therapy (centerimt dot com) will resolve hyperacussis “The body is always speaking volumes of information that provide incredible diagnostic tools. Integrative Diagnostics focuses on listening to that information. As a simple example each system in the body has its own unique circadian rhythm–a more subtle version of the way in which the vascular system presents a distinct heartbeat for diagnosis. Integrative Manual Therapy practitioners utilize advanced yet gentle palpation techniques to “listen” with their hands to all of these rhythms. In doing so they determine whether each system is in optimum flow or suffers anomalies and impediments.” How sweet. They also have classes available: “Health professionals come to CenterIMT to learn Integrative Manual Therapy from a wide variety of career backgrounds. Physical Therapists. Occupational Therapists. Doctors. Speech Therapists. Massage Therapists. Chiropractors. Athletic Trainers. Naturopaths. Homeopaths. Nurses. Dentists.” Don’t forget the books, and oh, green tea for sale, too.

(Oops, ADHD moment here – how long has this mug of Earl Grey been steeping?)

Moving right along, lessee… how about Tourette’s being caused by a “phlegm mist of the orifices”? (itmonline dot org) Ooh, this is treated with acupuncture and herbal mixtures, including scorpion. Fond as I am of arthropods, I’ll pass on that one. That reminds me, someone out there was researching Botox for tics – I could imagine someone taking that route for something like a cheek tic, but I’m not a neurologist, so I don’t understand the physiology of how it would help say, my shoulder-jerk tics or nose-tapping tics. (Then again, I don’t think that I’m dx’ed as full-fledge TS; the tics aren’t obnoxious enough. They can make singing along in the car more entertaining, though, especially after a long, tiring day at work.)

Speaking of music, apparently listening to a CD will cure migraines, “Like all our binaural beat recordings, simply slip on your stereo headphones and press the “Play” button on your CD player. The binaural beats will automatically begin affecting your brainwaves, and you’ll soon realize the benefit – no more headaches and a clear, fresh mind!” (binaural-beats dot com) Other CDs are available for balancing your chakra points, taking a power siesta, and more: “Brainwave entrainment is used in treatment of depression, low self-esteem, attention deficit disorder, drug and alcohol addiction and autism, to name a few.”

I’ll pass. When I want to sort out my brainwaves, I take a more traditional method: staring off into space and rocking. The tinnitus becomes less noticeable, the tics calm down, and sometimes I can damp the entrenched sort of migraine. Now there’s an approach to relaxation that merits some serious study.

10 Comments

Weeding Out The Astroturf

4 July 2006 at 10:05 (Anti-Quackery, Autism/Asperger's, Critical Thinking, Medical Quackery, Pseudoscience, Science)

This seems like an especially apropos subject to blog about; I am after all, a horticulturalist and also work with children who have developmental disabilities, some of whom are autistic/Asperger’s. As a freelance writer with degrees in science, my goal is to provide useful information to the public that is unbiased, based on good research science, and is not created to promote commercial products. In the classes I teach, the articles I write and the conversations I have with others in my community, I am constantly working to correct the misinformation given by the likes of J. Baker, who flog books full of quackery, self-promotional videos and broadcast programming, and present pseudoscience as special, secret knowledge that only they have access to because the “experts” don’t want the public to know. More details deconstructing this kind of bunk are on this page.

I really, really don’t like inauthentic stuff. I like fields with real grass, and floors with real carpeting. Astroturf and indoor-outdoor carpeting rub me the wrong way, even when I have my shoes on. More inauthenticity includes advertising, propaganda and campaigning presented as vox populi. (Sorry, I guess the word “propaganda” in that list is a redundancy.) “Advertorials” and “astroturf” efforts exasperate me.

When used outside of sports arenas, the term “astroturf” refers to faux grass-roots efforts. These activities are meant to seem like they come from the general populace, when in fact they are really self-promotional campaigns sponsored and instigated by businesses. The purpose of astroturfing is to spread a commercial meme, sliding it under people’s advertising radar by presenting it as originating from other ordinary people, rather than from its true source.

Real grass-roots efforts (as organizers everywhere will attest) are nearly always blessed with thin wallets but loads of volunteers. In contrast, astroturf efforts frequently have plenty of funding to support a small but carefully-led group of workers. The whole “autism is vaccine induced / mercury poisoning and we need to cure our stricken children with X, Y and / or Z treatment” crowd is a prime example of small-time astroturfing by the various quacks who are selling purported “cures”. Some of the workers in this whole fiasco are journalists / media people and medical personnel, who end up adding their skills and patina of respectability.

In an effort to “get the word out”, the workers are advised how to get the attention of unwitting television reporters to and create the angst-ridden, “small person vs big bad government / organization” newsbites that will sell airtime for broadcasting companies; are given sample letters to send to the local newspaper editors; and are provided with Web boards that purport to be helpful consumer sites and support groups for concerned families sharing information, but are also fronts for promoting commercial enterprises, e.g. quack “cures” and dubious treatments.

The insidious problem with stealth astroturf is that the people involved don’t realize they’re being duped. Full of earnest, well-intended zeal for spreading the gospel, these followers are very convincing and energetic, in ways that ordinary paid employees wouldn’t be.

Now, those Web sites can contain a lot of useful advice and emotional support between ordinary people posting there. But some of those members will find the boards are also bastions of groupthink, enforced by a booster club of the vociferous few who create an atmosphere that is hostile to disagreement. The zealous may also go beyond the bounds of their own personal expertise and become self-appointment experts simply by dint of experience rather than by professional expertise.

It gets worse. Beyond promoting commercial products and services, astroturfing seeks to champion not just the social but also the legal necessity. This requires selling the whole system of ideas to the mass-market culture as the beneficial and inevitable solution to what is actually an artificial need for a non-solution to a nonexistent problem. Therefore we have “autism epidemics” resulting from “poisoned” children, or those who assert that ABA is a “medically necessary” treatment for “afflicted” children.

The ordinary citizen or government official doesn’t understand the scientific or educational issues, and doesn’t have the time to educate themselves to a level necessary to be able to critically analyse the claims. When faced with the inevitable scientific debunking of either the problem or the solutions being sold to address them, these quacks find that they must fend off potential legal actions by expanding into pre-emptive damage-control: (emphasis mine)

As WKA Communications stated in a brochure distributed at Key West, “We’d Rather Guard the Border Than Fight the War.”
“If you don’t keep an ear to the ground, or ignore what you hear, the results aren’t pretty,” the brochure states. “In terms of time, energy and cost, the difference between early-stage issues management and late-stage crisis management is the difference between guarding a border and fighting a war. It’s easier and less expensive to influence an outcome before the government has written the law or regulation.“

In these cases, the question parents, educators, therapists and government officials must ask themselves is, “What is being sold here, and who ultimately benefits?”

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Hindered by Success

3 July 2006 at 17:52 (Accessibility, ADD/ADHD, Advocacy, Attribution Errors, Auditory Processing Disorder, Autism/Asperger's, College/University, Invisible disabilities, Learning Disabilities, Learning styles, Teaching/Tutoring)

The favor of your reply is requested.

The other year when I was giving the annual Inservice training to the other university tutors, I asked them how many had flunked a test or a class. Only one person of the dozen-plus raised his hand, and he too had some kind of learning disability/difference. I was amazed, and thought to myself, Is life really this smooth for everyone else?

All the other tutors were there as tutors because they really knew their stuff, they were good at it, and it was easy for them. None of the others knew the panic of not being able to do something today that they were able to do a few days ago, or not being able to retrieve knowledge they knew, or not understanding test questions correctly (and thus providing the wrong sorts of answers). Hardly anyone knew what it felt like to fail, and how crushing it was to work very hard, yet still not achieve.

I also had a classmate in a College Teaching course who worked as a Teaching Assistant, and who confessed that she got really impatient and annoyed with students who had trouble in the subject; it was easy for her, and she couldn’t understand how it wouldn’t be for anyone else! Oy.

Of course, for tutors they want people who have a good command of the concepts and details of a subject, and who can communicate those well. But they also need people who are able to be flexible in how they explain things, and who are empathetic with their tutees.

Sometimes the tutees seem unprepared. But we have to assume the tutee wants to improve; why else would either person be there? Asking the tutee, “Why aren’t you prepared? Don’t you want to get better at this?” is patronizing. It’s easy to mis-attribute the lack of progress to laziness or similar moral failing.

Tutees may be “unprepared” because they have gotten “stuck” at some fundamental level. For instance, they may have not completed the assigned reading because they are not understanding terms, or there are different definitions of familiar words that are specific to the particular discipline, so the text makes no sense even thought they “know” the terms in some other context.

Oft times our students cannot pinpoint just where in the process they are having problems. These are the students who will swear up and down that they are doing everything the right way, but aren’t getting the results that are supposed to happen. Insisting that the student merely needs to “try harder” is profoundly unhelpful. It’s not a question of how hard one is working, but rather how one is working.

Some of those students are the ones who are really smart and have mostly skated through primary and secondary school on sheer intelligence, and who have not developed many study skills. Or, they may be trying to use the wrong study methods because they’ve been told that they are “supposed to” study with flashcards, even though they don’t really learn well with that method. Many students need help developing new organizational or planning approaches to handle the greater or more complex work loads.

They may also have processing difficulties that are not readily apparent. For example, a student may spend so much of their cognitive energies listening to a lecture, remaining focused despite distractions, understanding the auditory input, and/or making sense of the concepts as they are presented, that they are unable to retain the information in their long-term memory, or to be able to simultaneously take effective notes. Despite having attended very carefully, later on they will not be able to explain what the lecture was about, or have useful notes to refer to. But this lack of “results” isn’t from a lack of effort; indeed, that student may be working twice as hard as their peers.

This is profoundly frustrating, and at this point the students either turn the frustration inwards and consider themselves failures because they are stupid at a subject, or else turn it outwards and insist the teachers are making things impossible just to flunk some of the students, or that the subject itself is useless. In cases like these, the student needs help figuring out how they learn best, and how they can advocate for themselves to have access to the material in a way that works best with their individual learning style, and thus be able to work with their strengths.

Differences in learning styles is hardly a novel concept, yet there are instructors, those professors, graduate teaching assistants and tutors, for whom this idea is mostly theoretical. The professor who is an auditory, sequential learner and who did well during their own school days when taught by the lecture method, will likely just lecture to their own classes. To them it’s a “natural” way of teaching and learning. Obviously there are students who are “smart” enough to “get” the content this way. It’s “proven” because it’s traditional. Writing a few key terms on the board and projecting an illustration or two in an hour’s monologue seems like sufficient effort for visual learners. Once again, the instructors are so personally successful that they can’t truly understand why others aren’t.

Students get tutoring because they are unable to learn subjects the way the subjects are taught, or because they have great difficulty doing so. They seek out tutors because they want to do better, not because they are lazy. Each of us has different tasks that find easy or difficult, and it behooves us to remember that these are different for each person.

At this point, I’d like to be able to explore this dilemma with other members of the blogosphere, so we can all improve our understanding. My question to you is:

What sorts of teaching and learning methods work best for you, and what kinds of situations have you found that particularly hindered your ability to learn? Feel free to provide concrete examples, as people have been through a variety of schools in different times and places, and good understanding needs context.

9 Comments

Making Sense of Rules

2 July 2006 at 15:24 (Autism/Asperger's, Aversives, Behaviour management, Judge Rotenberg Center, Paradigms, Personal change, Punishment and rewards, Teaching/Tutoring)

Harry Wormwood to his daughter Matilda, from the movie based on Roald Dahl’s book, Matilda:
“I’m right, you’re wrong. I’m smart, you’re dumb. I’m big, you’re little. And there’s nothing you can do about it!”

To make sense of something, to understand how it works, what is significant about it in your own experience, in short, to create a meaningful gestalt, requires that one be able to manipulate it physically, to stretch it, pull it, push it, turn it upside-down, use it in different ways and then compare and contrast the results. This is the active process of learning.

Making sense of the social world and its often unstated rules requires that one be able to do original research in the nature of it, just as one does with the physics of the universe. The problem however, especially for our autistic/Asperger’s students, is that the social world is not nearly so consistent as is the physical world or the digital world. You mess around with mechanical objects or video games, and the responses will consistently fall within the same parameters. Likewise, the ecology of the biological world is more complex, but still rather straightforward.

However, human social systems are rife with “fuzzy logic”. The social sciences are seen as comparatively “soft” sciences because sorting out the variables and interpreting the results is so damn tricky. Given such complexity and unpredictability, it’s no wonder that autistics, whose social radar is less acute, often prefer to stick with the natural sciences, or view themselves as researchers of human beings.

People not only need worlds that they can make sense of; they also need worlds that meet their needs. The needs of children and students are somewhat different than those of adults. They are still very much in the process of building understandings of the social world and of their places in them. They need to be able to create systems that are functional and adaptable, and they need to find a place in society that allows them to continue to grow as individuals, that draws upon their personal strengths and works with their individual weaknesses, and that respects the parts they will have to play throughout their lives.

Rigid, unyielding rules systems built upon the premise that the child or student is a bad person, who needs to be controlled, and always told what to do, cannot effectively provide that.

There’s a kind of physics in social relationships: push on someone, and they will push back with that familiar “equal and opposite reaction”. No one likes feeling controlled, like a helpless pawn in some chess game. Everyone wants to feel that they have some measure of say and control in how they get their needs met – this is what empowerment and respect is about.

Empowering others is scary for some people because it requires relinquishing some of their control. Or rather, empowering others is about giving them opportunity, the right tools, and letting them have responsibility. The whole crazy part about the current scenario at the JRC is the people in control complain that they “have” to use force (pain and other punishments and rewards) because the students would otherwise be irresponsible.

This isn’t about a child “testing authority” as feared by disciplinarians; it’s about the student being able to try things out, practice, reflect, discuss, acquire new skills, and practice some more. Being given absolute rules circumvents the learning process, and later when they need to adapt to novel situations, leaves the learner in the lurch, stranded without the knowledge of how to devise new strategies. They only have a limited number of tools in their social toolbox, and little knowledge of how to build new kinds of tools. If we go telling children what to do for their entire lives, then we shouldn’t wonder that they become young adults without the ability to think for themselves and to be responsible without someone monitoring their actions.

How do children learn to be responsible? It takes practice. If you want people to know how to be inner-directed, moral, responsible people, then they need the opportunities to learn how, and they need adults to share their wisdom and their power and to help them along the way.

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Being Unruly

1 July 2006 at 14:24 (Autism/Asperger's, Behaviour management, Judge Rotenberg Center, Punishment and rewards, Teaching/Tutoring)

On Kevin’s blog, a former employee of the Judge Rotenberg Center, “kml”, described how one autistic student was subjected to electric shocks via GED because he would greet people arriving at the classroom by saying, “Hello”.  (The rationale being that the student’s actions were “disruptive”.)

Given that some parents spend a lot of time helping their autistic children develop verbal and social skills, this is especially heart-wrenching.

An authoritative, punitive approach doesn’t teach the student/child how to identify the true causes of their problems, and then find different ways of solving them.  Instead, it teaches one to (1) not get caught, and (2) “might makes right” (where “right” in this case is more about privilege and power than about correctness).

This kind of framework keeps behaviour regulation extrinsic – the child relies upon others – instead of intrinsic.  Even after the child has internalized the “you are a bad person” message and the “you deserve this” message, they still end up seeking approval from others for their good actions.  The process is still ultimately extrinsic.  All of this creates a state of perpetual rebelliousness and/or insecurity.  There’s no real moral growth.

Even when the teachers dragoon other students into the system as underlings, no one is really empowered to truly help themselves.  This is not how we teach respect.  Respect is earned, not demanded by authority.  Being respected and being controlling rarely happen simultaneously.

Secondly, such a system invariably puts the focus on what the rules are, rather than why we do what we do.  One has to be able to practice and to reflect upon how ideas work in different circumstances, in order to develop the internal moral framework that is necessary for maturity. Being able to generalise concepts across different circumstances is sometimes challenging for our autistic/Asperger’s children, and one can’t develop that if they are always being told what to do.

If parents and teachers are finding that their children and students are being “little lawyers”, then they should seek to find what in the system is making everyone so anxious that every decision needs questioning.  Because in truth, it is the system that is being questioned, more so than the authority!  Re-asserting one’s authority doesn’t resolve that, it just adds more friction.

We want a system that enables us to create plans for coöperating with and helping others, rather than focusing on punishments and rewards.  The problem with relying upon punishments and rewards is that they don’t help create the respect, responsibility and relationships for creating community that are our ultimate goals.

People who are heavily invested in punishment and reward systems, invested ego-wise, security-wise, and/or financially-wise (such as the JRC), will try to assert that not using the punishment and rewards to control behaviour will result in gross misbehaviour and chaos.  This is a false dilemma; there are other ways of teaching our children.

When you’re hostile and suspicious, everything looks like dissent, everything looks like challenge, and everything looks like rebellion.

Even saying, “Hello”.

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