rethinking school

Published March 30, 2009 by Nancy

I’m starting to wonder if the whole concept of school is a bit like a rotary dial telephones.

Public schooling was developed in the mid 1800s to early 1900s to give reading, writing, and ‘rithmetic to the masses. Most people were farmers, hence the summers off.

It was a system where teachers hit kids who didn’t cooperate and labelled unsuccessful kids “dunces” and humiliated them. There were no learning disabilities, no disadvantaged parents, no social skills training, no autism spectrum. There wasn’t even much kindness.

All kids faced the front because they had to watch and listen to the teacher, who was the main source of information. They could also look at books, the alternative source. They sat at desks because the point of education was to write. They were supposed to sit still, not run around, even if that’s what their bodies were screaming at them to do.

And here we are today, past year 2000, still with more or less the same model.

Despite what we know about differences in child development

And neurodiversity.

And the problems with age groupings.

Despite the internet.

Despite changes in the family structure, parenting, parent education levels, and the urban work schedule.

Sure, some people have experimented with alternative schools and home schools.But the majority of kids still go to schools.

Where learning is painfully slow if you are bright, and painfully fast if you are learning disabled.

Where extroversion is rewarded and introversion denigrated.

And where ASD kids have suffered for decades.

The problem with school is something called Normal.

Normal doesn’t exist, yet it’s the thing school revolves around. And if you’re not in or near this Normal, school ends up making you feel like a freak. It takes years to shake it off.

I don’t know what the alternatives are. Sometimes I picture a hybrid learn/work program, where kids shadow adults part of the time, learning work-based skills, and then learn from school and the internet at other times. Or maybe all kids belong with their parents at work, in separate classroom areas, where they do lessons by internet based on their own interests, and work the rest of the time by their parents side. When kids don’t want to do school and learning, they do something else.

But maybe that’s too organic for our culture.

I know my kid would be happier.

if I could do one thing

Published January 27, 2009 by Nancy

Last week, I read Naomi Klein’s new book The Shock Doctrine. This is a book about money in case you haven’t read it. Not a fun read, but it defines disaster capitalism, which is pure-gold insight.

One chapter keeps replaying in my mind. It describes how some victims of Katrina went to Thailand last year to visit some fishing communities destroyed by the tsunami. They were stunned to find that the communities had been entirely rebuilt — unlike New Orleans, which is still a mouldy heap.

The difference?

The Thai communities rebuilt themselves.

They didn’t trust the government to do it right. They heard rumours that the government wanted to open the beaches for the tourism industry. So they squatted on their land and started rebuilding. They had to assert themselves into the decision making and force their goals.

The moral of the story: Sometimes you have to do things yourself.

The failure of the rebuilding of New Orleans (and Bagdad) should not be a surprise. The grants went to private corporations. They didn’t go to the people themselves. The corporations didn’t even hire local people to do the contracts. They hired outsiders.

But who cares, right? As long as it all gets rebuilt.

Except that it didn’t get rebuilt.

The reason? Wrong goals, wrong vested interests.

People who live in ruined communities have one goal — to rebuild their homes. And they have a vested interest in their life in this community. Private companies have a different goal — to make a profit. They have a vested interest in their company’s stocks. Itinerant workers have a goal — to make a buck and then go home. They have a vested interest in their own lives.

Only the people of New Orleans really, really wanted their city to be rebuilt. But they weren’t part of the program.

Money doesn’t make things happen. It empowers people to reach their goals. Goals that point in the other direction are like a black hole. Money just seems to disappear.

So relate this idea to autism research.

Funding goes to universities and research centres to “find a cure.” The goal of the universities is to make a profit, raise their profile, and attract more students and faculty. For the researchers, it is to further their academic careers and research interests.

It is not to improve the lives of autistic others.

Sorry. It just isn’t.

Consider this. If improving the lives of autistic others meant these researchers had to change careers and research interests, how many would change? If research finally showed that the genetics route is a dead end, would all the autism genetics researchers suddenly become, say, pathologists or psychiatrists?

No. They would remain geneticists and move on to the next promising research area.

Because their goal is genetics, not autism.

There is a lesson in this for families. We rely so much on doctors, specialists, and researchers to come up with cures and fixes. Millions of dollars get spent. Nothing changes. Sure, sometimes there is a “new promising drug.”

But believe me, essentially nothing changes. There is a big black hole thing happening.What if, instead of FEMA, a group of New Orleans citizens had been in charge of all the rebuilding funds coming in after Katrina? What if this group had made all the decision about the money? How long would it have taken to get things cleaned up?

Days? Weeks, possibly?

It’s not rocket science, people.

Give me a grant of $10 million to find a cure for Asperger Syndrome. I am a parent. I have a goal and a vested interest. I would pick a team of six other intelligent and capable AS parents.

We would determine the research agenda and hire the researchers. We would monitor it and make all the critical decisions.

We wouldn’t care if something could be patented or not, or whether it was cutting edge. We wouldn’t have a great overarching scheme– we would be practical, immediate.

And then just give us two years.

I know at the end we would have something.

science and religion

Published January 27, 2009 by Nancy

This past spring, I sent The Sensory Team Handbook to publishers for consideration.

Dumb, yes. And I did receive an offer, which I turned down. Long story.

Anyway, back in March, my brain still umbilically attached to the printing press, I sent a manuscript (one of several) to a children’s book publisher owned by the American Psychological Association. The website blurb said it published books for children and youth on topics related to psychological health and growth.

Sounds good, I thought. Good fit.

But by late spring, I received a response of no.

The reason?

Because the APA does not believe in sensory processing disorder.

Does not believe.

I raise an eyebrow.

I’m all for freedom of religion, don’t get me wrong. People have all kinds of belief systems, and I think that’s great.

But <ahem> what’s religion doing in the American Psychological Association?

And an even bigger question — What is religion doing in science?

I don’t mean the pro/anti-creationism thing goes on in the US. I mean treating science like a package of facts glued together, that you can choose to believe in or not

Science is not a thing, it’s a way. It’s the scientific method, which is the great truth serum of the universe. It’s not perfect, but it’s the best serum we’ve cooked up in a few millenia.

So is it just me, or is what’s called “science” moving farther and farther away from the scientific method?

Who hasn’t dealt with doctors that “don’t believe” in something that you know you have? Doctors are not scientists. They lost their link with science when they left their bio undergrad. Now they just read publications and join organizations. Maybe go to some lectures.They read summaries of the research or just the conclusions attached to the summaries.

They don’t ponder, question, re-test, analyzie. They learn by rote.

That ain’t science.

Think about this the next time you get a square-peg-in-round-hole answer from a specialist. Question their answer, and then watch their reaction. Do they bristle with holy indignation? Recite chapter and verse of some medical doctrine? Give you a sermon about all the apostates out there?

If you don’t back down, do they show you to the door, like priests refusing absolution to unrepentent sinners?

My opinion — nobody working in or with science should hold beliefs about what they are doing.

Read, learn, listen, yes. But still think, test, inquire, probe.

My another-opinion — it’s not research if its purpose is to bolster an already-held belief. If it blames unexpected observations on flaws in the experiment design or outside factors.

It’s a bit Monty-Python-ish:

Mr. Praline: Now that’s what I call a dead parrot.

Owner: No, no…..No, ‘e’s stunned!

Mr. Praline: STUNNED?!?

Owner: Yeah! You stunned him, just as he was wakin’ up! …

Where do these scientifico-religious beliefs come from? In psychology, they come from the funding.

Funding is the temple of scientific belief.

Drug companies fund most psychology research. If there’s no drug treatment, then duh, nobody’s going to pay for the research.

Pharmaceutical companies get to write the bible of psychology because they pay for it. SPD is out, ADHD is in.

APA will publish books on ADHD. Not on SPD.

I studied religion at university. Rabbi Baasser told us that everything that’s interesting in religion is occurring in the fringes, among the apostates and heretics. Today’s heresies are tomorrow’s orthodoxy.

So bow to no graven images. Seek the truth, test it, re-test it, question it, analyze it. Most of all, temper your beliefs with humility, because what we know is never final. Be open to learning more.

That’s science.

I published the book anyway.

making a world of difference

Published January 25, 2009 by Nancy

Neurodiversity is a new buzzword in autism spectrum circles.

It’s part of a movement among autistic and Asperger’s adults to redefine their life. They want people to see them not as problems to be cured, but as human variants to be respected.

They’re not missing something — they have something else.

Refreshing.

After all, we’re talking about people here — some of them among the most brilliant minds on the planet.

Refreshing.

After all, we’re talking about people here — some of them among the most brilliant minds on the planet.

name syndrome name

Published January 20, 2009 by Nancy

I am fascinated by the concept of <a href=”http://en.wikipedia.org/wiki/Syndrome” target=”_blank”>syndromes</a>.

A syndrome is a collection of symptoms that have been bundled together to make it convenient to talk about them. Like Asperger Syndrome.

It’s not a <em>thing</em>, really.
<blockquote>You: Doctor, I have a sore knee and a crick in my neck.

Doctor: Ah, yes. that means you have Sore Knee Crick In The Neck Syndrome.</blockquote>
<em>Syndrome</em> is just parroting back what you said. It means: “We have a great name for your set of symptoms and the patterns behind them. We assume it’s a condition, but we don’t know the cause or physiology. But now you can Google it.”

It’s basically the medical equivalent of a Gaulic shrug.