Who Owns It?

“It’s not about YOU,” I explained, although I had that dreaded sinking sensation that although the words flowed by her ears and pinballed through the processing areas of her brain, that although she was hearing and listening and understanding the verbiage, the other staff member was also not really understanding what the hell I meant. Meanwhile, the children around us were bouncing around in various levels of happiness, impulsiveness, mild disobedience, and general obliviousness to rules. As long as no one was getting hurt, the minor details of behaviour didn’t matter; this was yet another day at the city pool, in a long line of such overly-hot summer days at the city pool.

“It’s not about what you’re doing,” I tried in vain to rephrase, although my efforts were getting to be pretty lame by this time in the afternoon, what with the combination of summer heat, the impact of children’s high-decibel noise aggravated by hyperacussis, and the strain of trying to track a dozen children despite mild faceblindness. “I mean, how you handle it does matter, but …” I stared into the distance, as one of our charges was wandering around with her bathing suit bottom halfway up one buttock. I kept track of our children by remembering what bathing suits they were wearing, so I was predisposed to notice such. “But it’s not about you.” I finished, flapping my hands a bit in agitation as those words were still in my verbal buffer, but I was instead needing to formulate some kind of sentence directed to another staff member closer to our wayward girl.

“Oh, he’s just being defiant, and I’m not going to let him,” she replied in the self-assured manner of the barely-twenty-something, and left me to go refill her cup of iced cola. I heaved a big sigh at the idea of “letting” someone be defiant, and went to intercept one of our autistic boys so he wouldn’t toss bits of paper into an air conditioner fan.

There are some children who are just explosive in temperament, for any number of reasons. Handling such children is always tricky, because it’s all to easy to get sucked into the whole situation and end up aggravating the dynamic instead of damping it.

Some children get angry because they are being defiant, and are pushing you into a power struggle. We’re familiar with how this works with toddlers who return instruction with a, “NO!” The best approach for such is to give them choices that are acceptable to you – the toddler feels they now have some measure of immediate control over their life, and yet you are still in ultimate control by being able to select options that are appropriate. Teenagers are sometimes like toddlers-with-hormones, and frequently benefit from similar tactics. In any regard, you shouldn’t respond to the power struggle, but rather respond to the situation and help the child understand the options they have available to them, and how to anticipate the results of their choices. (Sometimes I hate to use the word “consequences” because it has gotten so laden with meaning punishments.)

This particular staff member was predictably playing into the power struggle, and was determined that she was going to “win” by proving something or another to the child. However, this child wasn’t really being defiant in the volitional sense. The defiance wasn’t premeditated or consciously malicious. This was just one of those children who didn’t have sufficiently well-developed mental “brakes” to be self-aware, anticipate things, and stop himself before he reacted to situations. Such children frequently have low frustration levels, which are also a result of this kind of dysfunction.

The issue here was many-fold. For one thing, the staff member was reacting to the effects of the problem (the blow-ups) instead of the cause of the problem (the child’s processing dysfunction, plus the ongoing presence of situations that fed into the blow-ups). For another thing, the staff member believed that she had a lot more ownership of the solution to the problem than she did. She probably also likely believed that the child had a lot more ownership of the cause of the problem than he did. But although the child rarely meant to get so upset or angry, he still had to have some responsibility for what he did, otherwise he would end up reneging on most of his personal responsibility and go from being a child with a problem to being a brat with a problem.

It’s one of those weird little subconscious glitches in our brains that leads us to make fundamental attribution errors – our own lapses are caused by environmental reasons (“I of course couldn’t help but be incoherent as the heat and noise was making me tired”), but other’s lapses are caused by their moral failing (“but she was being foolish”). Staff members, teachers and other people usually assign successes to themselves, and failures to the children.

But in real life, education “takes two to tango” – both the teacher and the student need to work at the process. So does engaging in arguments – the second person has to continue to give the first person enough responses that reinforce all the hollering and carrying-on.

Diffusing these explosive situations is difficult. We have to figure out just when a child is being truly manipulative, and when it’s some kind of cognitive dysfunction, and when it’s a child with some kind of cognitive dysfunction that on that day is just being manipulative – life is messy! Sometimes we can identify what kinds of situations tend to spark these meltdowns, and then during a good time, discuss with the child what ways we could work with them to change things so they would be less problematic. We can also defuse or at least reduce those meltdowns by not giving into the power struggles. We have to remain compassionate, but detached. Be calm, remove extra people from the situation, give plenty of personal space, have open and friendly body language to reduce the feeling of threat, even be silent sometimes to let the argument fizzle out. After the child has calmed down then we can reflect with them in an objective manner about what happened, what needs to be done to rectify the problem by restitution to the others who were involved, and work proactively to reduce such future events.

But as I redirected the boy from flicking bits of paper to flicking pool water, I realised that I would not be able to “make” the other staff member understand something until she was ready to look beyond the necessity for “not letting” him do something. I could not control her need to “win” the argument any more than she could control his need to not quit an activity when it was time to leave.

Advertisements

Centenary Retrospective

“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

No Eye for Beauty

Let me set the stage with a visual here:

Flight attendant: “Would you like a copy of People magazine to read?”
Me: “Er, no thank you. Do you have Scientific American or Popular Mechanics?”

Why on earth would I want to read People magazine? I don’t know who most of those people are, even though they’re supposed to be famous actors or beautiful models or important politicians. My teenage daughter says that the same famous actor was in both the Lord of the Rings and Pirates of the Caribbean movies, and I’ll have to take her word for it; I certainly can’t tell! Furthermore, I don’t care about fashion models or makeup. Although I understand why others do, from a strictly intellectual (anthropological) basis: celebrities are important figures in the greater tribe, therefore it behooves us to be able to recognise them.

Among the faceblind there is the concept of “Gorbachev effect” – even the faceblind person can recognize Mikhail Gorbachev because of the distinctive port-wine stain birthmark on his head. (Well, assuming that the guy isn’t wearing a hat …) It’s much easier to recognize someone who is highly divergent from the mean. The more striking people are often either “ugly” in some way, or very distinctive from the local group by virtue of ethnicity or body feature.

This may be one reason why I gravitate towards environments such as graduate school with all the international students, or special education with all of the physical differences. Unfortunately, identification is by distinguishing characteristic — one Indian woman among fifty very “vanilla” North Americans stands out, as does one boy with Down’s Syndrome in a regular classroom. Put her in a family wedding party or him in a Special Olympics tournament, then to my horror I find that they have suddenly disappeared from my visual horizon and I can no longer find “my” person by facial exception. Then I must rely on the slower and less certain factors of gait, voice, mannerisms, or overall body form.

In studying animal behavior, Ron Prokopy came up with the idea of a “supernormal stimulus”, meaning a behavioral sign stimulus that is larger-than-life, something even better and more exciting. For an entomology example, when controlling apple flies we can hang a sticky-coated red ball in an apple tree that still has small, green fruits on it. The apple fly females see this ball that is larger and redder than all the other fruits, and are (fatally) attracted to it as an optimal resource for laying their eggs.

People who are considered to be exceptionally beautiful exhibit a kind of supernormal stimulus: their features are more optimal by being more regular and symmetric than the average person’s. Their features are not just normal exemplars (models) of what a desirable human should look like; they are supernormal, hence they are supermodels.

The ultimate causality for being attracted to “beautiful” people is that even, normal features suggest both good genes and good health. Even though there are various fads among cultures and time periods about what is considered to be “sexy” or “attractive”, there are still some basic qualities that are universally perceived as beautiful because they suggest a healthy, young adult that would be a good mate choice.

From a proximate standpoint, the faceblind person may prefer the faces of people who are distinctive, because they can be more easily recognized, and thus are associated with less stress of identification, and because they increase the likelihood of repeated identification. As you might expect, faceblindness plays hell with dating. (It also has more insidious effects, such as playing hell with one’s ability to network on the job scene — even the person that one can eventually learn to identify on the job won’t necessarily be identifiable in another time and place, plus the faceblind person simply doesn’t build up that large number of interpersonal connections that the neurotypical person does.)

My husband is not extremely different in appearance, albeit when dating he had a beard and wore his hair longer than most men at the time. Alas, he no longer does, and when he’s barbered in an everyday manner I have mananged to lose him in plain sight multitudinous times in our 25 years of marriage. When I misplace him yet again, I stop to try and remember what he was wearing, which is usually a blue shirt (he is very fond of such) but unfortunately so are hundreds of other people. While otherwise focused on taking photographs of plants at a botanic garden, I eventually realised that I’d been absentmindedly tracking the wrong “person in a blue shirt and khaki shorts” (a surprisingly common subspecies of Homo sapiens — even the male of the couple we were visiting was dressed identically, so the guys appeared twinned). Although I can spot a single Viola pedatifida in a prairie, I can’t find my husband in a crowd, so I had to call him on his mobile to arrange a meeting location, whereupon he naturally spotted me first and semaphored dramatically so I could notice him standing there 50 feet away. And so it goes!

In smaller environments, I listen for him, for his asthmatic breathing pattern and his distinctively heavy tread. It’s a good thing that he can recognise me, because he’s hard of hearing, and besides, I have what others have described as an alarmingly light tread (I “sneak up on” them) when I’m not clumsily crashing into objects.

Although there is an innate preference for certain kinds of symmetric beauty among all humans, it would be interesting to see if developmental prosopagnosics are able to distinguish among sets of faces those that are generally considered to be more attractive, and if they are personally more attracted to distinctive faces than those that are generally considered to be more attractive in the normal or supernormal sense. The further purpose to such a line of enquiry would be to explore how much of the concept of “beauty” is innately bound to the process of facial integration and recognition!

Personally I suspect that most faceblind people could identify someone as being classically pretty, but would have different qualifiers on whom they personally find attractive.

Plaint of the Aspie

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

 

Are not my tears and blood salt of this earth?

 

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

 

We are deemed aliens, and yet your brethren.

 

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

Things Of Which To Be Aware

NOTE: I should mention that this is rather much different than my usual sort of post. It’s quite the ADHD ramble, pulling together all sorts of odd bits and bobs and things that tickled my brain this morning. After this I’ll return you to the regularly-scheduled blog posts.

~~//~~

Did you know that honeybees can learn to identify pictures of human faces? Some researchers, Adrian G. Dyer, Christa Neumeyer, and Lars Chittka, were able to train honeybees to cue to photographs of specific people as sources for nectar rewards.

For someone who has studied insect behavior and who has prosopagnosia (face-blindness, or the inability to recognise people just from facial features), this is fascinating. The bees could learn with better than 80% accuracy, which is more than I can do (described here). That is rather humbling. Of course, we might point out that the bees were only learning to cue to repeated flat pictures – in real life, humans are trying to cue to moving humans seen from a variety of perspectives. ::sigh::

There’s not tons of research done on insect cognition, unlike cognition in large mammals including elephants, chimpanzees and dolphins. Smear a bit of paint on one of those mammals, show them their reflection in a mirror, and the critter will stop, look, and then use their reflection to inspect their bodies, including touching the paint if they can reach it (as Larry Niven has pointed out in his science fiction stories, dolphins are notoriously handicapped by having short limbs – which similar problem Mat Fraser has humorously described in Ouch! podcasts; we all have issues).

I understand that when I look in a mirror and see a face, that it’s probably my face. But if cues like hair and glasses are removed from photos, I probably could not pick out my own face from a set of photos of other humans. In fact, I have been known to catch sight of myself in an unexpected mirror (such as wall tiles at a mall) and have not recognised that I was indeed seeing myself – I thought that someone was wearing clothes similar to mine. I am however, self-aware, although you may have to take my assertion of that as proof that I am aware of both the concept of self-awareness and of my own identity. (grin)

Bees probably aren’t self-aware, but if they were, it would not be self-awareness of the same scale as that of a mammal – even thought they can learn and can communicate, the brains of bees just aren’t that complex, and are mostly devoted to sensory processing. They are very tiny animals after all.

So here we have these self-aware animals: Mat Fraser, elephants et al. Then over on another part of the planet we have Deepak Chopra, who is also a self-aware animal, but seems to be in over his head, cognitively speaking:

“The entire universe is experienced only through consciousness, and even though consciousness is invisible and non-material, it’s the elephant in the room so far as evolutionary theory is concerned.”

Boy howdy. Chopra, in his masses of abstruse nonsensical verbiage, is anti-evolutionary and asserting that only metaphysical explanations could bring about the universe. I’d hate to be the one to break it to him (the ensuing argument would likely be so absurd that I’d want to again take up banging my head on the wall in frustration) but the universe is NOT “experienced only through consciousness”.

Animals, whether or not they are self-aware, are all conscious of their individual Umwelts, or subjective sensory worlds. So too are plants, which respond to sensory inputs of light, gravity, and touch-pressure, but plants are not conscious organisms – they do not really respond to music etc. Plants experience the universe, but not through consciousness. Chopra’s figurative elephant needs to give him a good whack with an evolutionary biology textbook.

If you want something of which to be aware, then don’t believe everything you read, even if there are lots of important-sounding buzzwords.

Meanwhile, if you’re looking for some evolution humor that’s better written than Chopra, check out this satirical piece at the Onion: “Kansas Outlaws Practice Of Evolution”

Being the Class Project: Reflections upon False Inclusion

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

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

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

One of the reinforcement mechanisms the teacher had was a “warm-fuzzy” type box for the students to drop in anonymous notes praising each other for various activities. These were read aloud by the teacher once a week. After I had been there for a couple of weeks there was an abrupt flurry of missives complimenting me on my efforts at spending time on reading or being helpful in my classroom duties. I found such approval odd, for we all had the same duties, and reading was simply something I enjoyed. Why should someone be commended for having fun?

Actually, I found such praise to be entirely unrewarding, and the realisation of that sat uneasily upon my young mind. I did not have the concept of “hollow praise” in my mental world yet. But I knew that although the words given to me were accurate, they lacked any semblance of real meaning. If the immediate purpose of this exercise was to boost my self-esteem or to comfort me, it truly did not work. Rather, it made me more anxious with the indescribable angst about how I was “supposed” to feel, and added to the ever-growing concern and unease about what I was “doing wrong”.

Moreover, if the long-term goal of this exercise was to initiate friendships between myself and the other students, it likewise did not work. Friendship is usually a natural result of mutual respect, having shared interests or experiences, and often from being together for periods of time, or having similar backgrounds or circumstances. Given the numbers of students in the classroom, the chances of at least one or two becoming my friend would have seemed likely. However good my potential aptitudes (despite actual marks that bounced between “ahead of level” to “needs much improvement”), I was obviously a rather awkward child. Not just a clumsy nine-year old girl lacking the physical graces necessary to playground games, I was also lacking the interpersonal graces necessary among  my ten-year old classmates. (The latter increasingly problematic as social interactions became progressively more complex, more important – and sometimes worse – more subtle.)

Even when noticed, no one knew what invisible differences handicapped my social abilities: Faceblindness (Prosopagnosia) meant I had trouble recognising people, and it always takes me a long time to figure out ways to reliably identify someone. With my ADHD I was prone to interrupting (I still have trouble with this at times). I had trouble discerning between when people where just pausing, done with a sentence, wanting my response, could be interrupted, or were done conversing altogether.

Being autistic meant my conversations lacked the kind of give-and-take where one speaker offers the other person conversational offerings, and provides responses. I did not know I was supposed to express interest in others by learning about their interests and life events, and develop a positive social history by keeping in touch. I’d never been told to do so; like so many things in life that neurotypicals somehow learn naturally, it was part of a vast body of hidden knowledge that I’d never been taught. Moreover, I lacked the intuitive sense for figuring out the scripts were supposed to be for “Barbie Gets Married” and other types of pretend play. Such awkwardness in social pretend play could hide my richly imaginative inner world. I did not know I needed to share my ideas, much less  how to effectively demonstrate them, aside from nascent writing efforts.

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

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

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

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

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

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

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

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

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

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

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

Top Ten Things About Having Faceblindness (Prosopagnosia)

(Not in order of importance)

  1. You save a fortune not buying celebrity magazines because you’ve no idea who’s in all those pictures.
  2. You can go shopping without getting waylaid by chit-chatting with random neighbors/ coworkers/ fellow students/ workers from businesses you patronize. (Especially if you’re also autistic and avoid chit-chat anyway.)
  3. Never having to worry about losing ten pounds for lack of attending school reunions.
  4. You’re a safer driver because you aren’t repeatedly checking and touching up your makeup ( gals, and a few guys, too).
  5. Less clutter around the house without a gazillion photographs of relatives and relations.
  6. You develop an appreciation for science fiction because it’s easier to tell apart the different alien races (the Vulcan from the Ferengi from the Cardassian) than it is all the look-alike “beautiful people” in the soap operas.
  7. No obligation to bother studying the Most Wanted criminal notices tacked up at the post office.
  8. You are more likely to befriend the handicapped or otherwise morphologically unusual people.
  9. Security guards appreciate the fact that you’re a big believer in everyone wearing identity badges.
  10. You could identify familiar people at a masked ball just from their gait, mannerisms or voice.

This is humor; for information about faceblindness, see this following page, plus Web sites listed on the blogroll at left
I’m Strange, You’re A Stranger

Trials and Tribulations

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.)

All Those Needy, Needy Kids!

From an email some years ago: 

" I have a friend who teaches Kindergarten in the town where I now live. She told me that last September over one half of her incoming Kindergartners had IEPs, with most of those children having an ASD."    

Well of COURSE they now have IEPs to help them with their scholastic issues. Why? Because the schools now offer services.  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.

I had multiple needs. What I got were glasses for nearsightedness, speech therapy, and forced right-handedness. I also got told that my difficulties were due to being lazy, stupid, careless, inattentive, rude, or due to inventing problems just to make life difficult for my mother.

What they "missed" was the ADHD, Auditory Processing Disorder, Asperger’s, prosopagnosia (faceblindness) et cetera. Of course, they didn't really "miss" those things, because they didn't have the screening tools (or even the names) for all those things then.  (In a previous diagnostic incarnation, ADD used to be known as “minimal brain dysfunction”; charming, eh what?)

Because the school districts did not recognise those characteristics as creating problems for me or for other students, they did not have services for such.    That such a large percentage of students are now requiring various accommodations does not mean that we have a greater number of "damaged" children.  Rather, it means that we have more students who are actually getting diagnosed as not being able to learn the same way as most of their peers. 

It also means that we have an educational system that is poorly – too narrowly – designed to teach children.  Too often children are faulted for "being problems" rather than for "having different needs". And quite often it's not necessarily the child that has the problem; it's the way they educational process is set up.   

When people cannot work well in human-designed environments, it is not the fault of the people; it is bad design.

Newer entries »