Don't mess with the neurodiverse!

Sooner or later, folks are going to learn.

http://neurodiversity.com/weblog/article/152/#cpreview

(If you don't immediately see what I mean when you click on the link above, read this, this and this.)

Living in a Material World

This aspect of life, that we do in fact live in a material word, has never been of much interest to MK.

Politics, religion, history, law: these are subjects that, in one form or another, have held MK's attention throughout his 12 years of life. He can tell you about the difference in Christian, Hindu and Buddhist understanding of the afterlife, the number of people who speak Tamil in Singapore, or how Hillary and Barack differ on Iraq. But until very recently, he would have been hard pressed to tell you what a camel is like, how ducks differ from penguins, where wood comes from, what lava is or what makes a car move.

Fair enough. It's hard to learn about things that we find boring, but I can't help feeling that a certain minimal level of understanding of the physical world makes it easier to get through life and that, ultimately, if you want to understand people, you need to understand the environment that they live in.

So it is with considerable relief that I find MK is, at long last, beginning to do just that. We spend about 45 minutes a night on bedtime reading. Recently we have been spending the first 20 minutes on science, and we are making exceptional progress. I think there are two things going on.

First, all the new language than MK has picked up over the past year has made it possible for him to discuss things with greater ease. Last year, for example, I remember asking him what clouds were made of (it was something we had talked about before). His answer, after some thought, was "esophagus." It's very difficult to untangle this sort of thing when language gets in the way. I could be pretty sure that "esophagus" meant something else. Possibly even "evaporation," but by no means certainly. And sorting that out is a pretty tall metalinguistic order. What is more, by the time you've done that, the original conversation has lost all its momentum. Now MK has less trouble (not none, but less) with the wrong words coming out when he speaks. And because conversations are richer and more flexible, it is possible to talk around language glitches so that the conversation moves forward.

Another thing -- and I think a larger thing -- is what Feuerstein describes as a demand for logical coherence. Part of his theory goes that, in the course of our cognitive development, we develop a need to have new pieces of knowledge fit with all the others we have stored in out heads. When they don't, things don't make sense. For example, when we first hear that bats catch insects as they fly around, we have no problem with it. But when someone tells us that bats are blind, we should feel uncomfortable. We should say, "That doesn't make sense. How do they see the insects?" Only by understanding echolocation can we reconcile the two pieces of information. And when we do reconcile the facts, we get a buzz -- that little jolt of pleasure that makes learning so much fun. However, for various reasons, not everyone feels this need for logical coherence. For example, if you have very little confidence in the facts that you are storing in your head, when two of them seem to be contradictory, you are likely to assume that one or both of the facts is wrong. In this case, everything seems vague and disordered and the new facts, far from producing that spurt of pleasure by reconciling the contradiction, just add to the confusion.

For some reason, MK is now starting to demand logical coherence in the physical world, just as he has long demanded it of the social world. Why are polar bears white? How can a person be killed by a tornado, which is only wind? How come we don't run out of oxygen? These are questions that have suddenly become worth answering.

And so we go, raising three questions for each one we answer as we move forward along an infinite path of tangents. A lot of the stuff (why a fish has fins, what squirrels do with nuts) is very basic. It's the kind of stuff a typically developing kid would have learned between the ages of four and seven. Other things (what atoms made of, how the movement of tectonic plates causes earthquakes) are what you would expect kids of MK's age to be tackling.

It's fun for both of use to be able to talk about this stuff and hopefully, by the time he is grown up, this will make the material world and easier place in which to live.

Rediculous

Check this out. Kathleen Seidel who uses her blog, at http://neurodiversity.com to support rights for folks on the autism spectrum and bad mouth crackpots who say wacky things (including things like, "autism is caused by vaccination). One particular set of crackpots who are suing a pharmaceutical company or the government or whatever, are trying to subpoena everything in her life vaguely associated with her broad rambling blog. She's not involved in the case in any way, and this is just an attempt to intimidate a vocal critic.

If the judge allows the subpoena, then no one will be able to blog freely on any subject. We will all be afraid that everything from our tax returns to our church attendance will be on trial if someone launches a civil action that has some connection to the topic we are discussing.

This story has also been picked up by Overlawyered.com. I do so hope that the judge is as offended as he should be and that there is some sort of sanction for this outlandish behavior.

Benvenuti!

Voglio dare il benvenuto a due gente chi sono divenuti membri del Autism Hub recentemente (anche se io non sono un membro). Sono già qualche mesi che leggo il loro blog e sono molto contento di sapere che ci saranno ancora più gente chi avranno il piacere di conoscerli ed il loro bambino. È anche una cosa meravigliosa che la comunità autistica sta cominciando a funzionare come una vera comunità internazionale. Benvenuti e grazie.

Milestones, they're not where you think

With a strange real-world/blogosphere synchronicity MK passed two milestones today, which boring NT textbooks would no doubt have spaced chapters apart.

I mention synchronicity because Marla had been talking about shoe tying skills. I got the impression that Marla thought ten was an advanced age to be learning to tie shoes. But it's one year earlier than the age at which MK started to make a serious effort in that direction. He got it, after a few weeks of practice on a thick shoelace tied to the fridge handle and another week or so of practice on shoe that had been placed on the kitchen table. He got it well enough, that is, that with a bit of coaching and the occasional parental finger to hold things in place, he could swing it (some post-tying tightening required at times). He rarely wears shoes with laces, so it wasn't much of an issue. Today marked a milestone because, waiting for the bus, I noticed the laced shoes he was wearing (because it was raining, which also explains why we were not on our bikes) were undone. I pointed it out to him and he tied them up. Completely unaided. Without so much as single verbal prompt.

The other milestone was opening a bank account. That's where we were taking the bus to. The timing of the bank account ties in with another milestone. Later this week, MK will be taking a five-hour plane trip to visit his grandmother, all by himself. This way he'll have a bank card to use if he does any shopping. He is totally ready for the trip, and totally ready to start managing a bank account (from now on, allowance will be by direct deposit). He is a boy with his head screwed on the right way. He is responsible, methodical, cautious and considerate. So I have much less apprehension in sending him off by himself, at age 12, than many parents whose kids tied their shoes at age five might have.

Actually, today there was another milestone of sorts. MK was given his first batch of French verbs to conjugate for homework. I was expecting a disaster, but he just sat down and did them. He didn't want or need any help from me, and he got them all right. That is particularly remarkable, as MK has yet to master English verb conjugation.

You are always hearing how things have to be sequential. How once skill builds on another. That may be so for some kids, but other kids have a more interesting approach to skills acquisition. Their lucky parents never know when they will have the sudden pleasure of watching them pass a milestone.

Winter Blues

It must be the end of winter or something, because everyone seems to be having their fair share of woe. My wife and I were talking today about MK's recent bouts of nervousness and his complaints about school.

I told her, "Don't worry, all my blogger-parent acquaintances are going through the same thing, so it can't be anything special that's happening to us." Though there have been some upbeat posts and some victories reported, Marla and Maizie, MOM-NOS and Bud, everyone's favorite troopers Nik's Mom and Nik, Joe and Buddy Boy, Casdok and C, and even Kristina and Charlie have reported rough spots. And there are other people who have not posted recently. As a policy, I'm assuming that is because life is too good to result in interesting posts -- familial bliss is a bit ho-hum to describe, after all -- but I'd be happier if I saw a few of those ho-hum posts, just to be sure.

In our house things are going well compared to last year but a lot of things are getting under MK's skin at school. His biggest complaint is that his aides are aiding him too much. In particular, one of them is always smiley and good humored, which MK describes as being crazy, and finds very annoying. I can kind of see his point, but there is not much we can do about it. I can't very well go to the principal and tell her to make my son's aide stop being so nice. Another recent complaint is that his friends will not play the games that he wants them to play. That's a pretty luxurious complaint for someone who had yet to make any friends this time last year. But MK doesn't see it that way. He finds it genuinely frustrating. On top of it all, a lot of his classes are boring. There is not a lot that can be done about a twelve-year-old finding social studies boring, but the upshot is that he is unhappy for a larger percentage of the day than he has been at any time since,... well, since about this time last year.

Once difference between now and a year ago, is that MK is able to express his discontent with much more precision. Last week, riding our bikes back from one of MK's daily therapy and tutoring sessions were we talking about languages (as we often do these days) and MK said that one of the languages spoken in Afghanistan was Dardu. When I begged his pardon and asked him to repeat it, he got mad and shouted, "Dari, OK. Dari! They speak Dari and Pashtu!" I complained that there was no reason to yell at me, as I simply had not heard. In fact, I was pretty mad. MK has been raising his voice more often these days when he cannot make himself understood. What he said in response really surprised me. He said that he was mad at himself, not at me. That he was frustrated with thinking one thing and having another thing come out of his mouth. That wasn't the surprising part, because he has often voiced his frustration about this. But what he said next was that he was working very hard on learning English, that he was studying the dictionary every day and listening carefully to the way people said things so that he could say it the same way. He said that he wanted to be finished learning by the time he turns thirteen. Here I have been marveling at all the progress he's been making in language and putting it all down to speech therapy and natural maturation. It never crossed my mind that he was deliberately studying by himself. Of course, it makes sense, who wouldn't want to sound like everyone else by the time they become a teenager, and who wouldn't be frustrated when that goal seems hard to reach. His thirteenth birthday is only a few months away, so that might be a bit ambitious, but by the time he enters high school one year later, I think his language will, in fact, be more or less indistinguishable from his peers (other than the fact that most of his peers probably won't know what languages are spoken in Afghanistan).

MK's SLP tells us that this is all for the good -- that a tolerable level of frustration is what drives growth and learning. This is probably largely true, but I wish there were a way in which he could overcome challenges without struggle, without self doubt, without boredom or frustration or anxiety. I guess that makes about as much sense as wishing for spring without winter, but I wish for it nonetheless, for us and everyone else.

Why Hillary Is Wrong to Support Autsim Speaks

Autism Speaks is an organization devoted to funding and lobbying aimed a finding a cure for autism and/or finding genetic markers that would allow fetuses with autism to be aborted before birth. At an Autism Speaks event, Hillary Clinton said that we need to, "cure or prevent anything along the autism spectrum." I wrote the following long-winded diatribe to explain to a friend why I think Hillary Clinton is wrong, but it also sums up a lot of my thinking about autism and how we react to it.

Autism is a collection of related traits. They can each be present to differing degrees. Like most traits, depending on circumstances, these traits can cause difficulties, or be advantageous, or both. For example, most autistic people have a propensity to abnormally high levels of focusing and concentration. This can result in great pleasure and great achievement, but it can also cause social difficulty and get in the way of being what we like to call a well rounded individual. Other traits include a higher than average perceptual sensitivity, which can result in both great distress and great awareness. Most autistics have an unusual way of processing language, and many autistic people have trouble talking, but there are also many who excel at it and some great autistic poets. As with handedness and sexual orientation, to give just a few examples of
easily noticeable traits of the same general class, these traits are underpinned by hardwiring in the brain.

I would expect these differences to take the shape of a larger or smaller concentration of a particular type of neuron in a particular part of the brain, or a difference in neuron length, or a physical difference in tissues that up-regulates or down-regulates certain types of signaling. I am fairly sure that several different differences result in similar traits, so autism can be caused by
different types of wiring differences.

These traits may also be co-present with other traits, such as those we label as ADHD, OCD and various cognitive impairments as well as those we label as drive, talent, genius, etc. and all the other run of the mill traits such as laziness, heterosexuality and what have you. However, it is particularly worth noting that what we are currently calling autistic traits often show up together with what we tend to see as mental or intelectual impairments. My guess is that they often share common causes. For, for example, the same wiring difference that produces intelectual impairments may also produce autistic traits. At the same time, a person can also be very intelligent and very autistic, reinforcing the idea that there are most likely many causes of autism.

Some people take it for granted that autism is always a bad thing, but I cannot agree. Famous people on the autistic spectrum include Steven Spielberg, David Byrne, Bill Gates and, though he lived too early to have a psychologist say so, almost definitely Albert Einstein. It is unlikely that these people would have been who they were or achieved what they achieved without their autism. Many autistic people have wonderful lives because, in part, of the great pleasure that their autism allows them to take in things that non-autistic people might find boring. Science is the classic example, but it is certainly not limited to that.

Some say that the social problems that these folks encounter, especially as kids, outweigh any positive effects, and therefore they would not wish it on anyone. I think a good analogy is homosexuality. If you are gay, you are going to have a more difficult (or at least more complicated) time, especially as a teenager. But that does not make me want to say that we need to find a cure for homosexuality.

I don't think that anyone thinks that being autistic presents no problems, though I do think that we often go overboard in pathologizing differences. Having problems is part of life and just because people with some traits may need help in specific areas, it does not follow that we should seek to eradicate those traits. Left handed kids often need extra help with handwriting as well as requiring specially strung guitars (except Hedrix, of course). Should we abort left handed fetuses? Jocks tend to suck at poetry. Do they need to be cured, or will education -- and where that reaches its limits, acceptance -- suffice?

I am a died in the wool social liberal (but a fiscal conservative with libertarian tendencies, in case anyone was interested) and I think that mothers should be legally able to abort on any grounds. So when I say I am against eugenics targeting autistics, I don't mean that this should be illegal. If parents are aborting because it turns out the kid is going to be blond, and they wanted brunette, that would be legal, but I'd say they were acting badly. When deciding whether screening for traits such as autism is acceptable, it might be useful to ask ourselves, if there were a prenatal IQ test, would we use it? What would be our cut off? Would let our kids grow to term with a projected score of 100+, or hold out for 120? What about tests for height, breast size, lung capacity, early cancer, etc. Would we favor all of those, or would we say que sera sera?

It's a matter of what we consider acceptable. And people in Autism Speaks in general, and Hillary Clinton is specific, do not see having an autistic child as acceptable.

But it's not so much the the actual eugenics that causes problems, it is the implication. If you say, as Hillary does, that we should "prevent anything along the autistic spectrum," then you are saying that it would have been better if no one on the autistic spectrum had been born. How much importance do we attach to those who society says would be better off dead? How likely do you think we are to respect the rights of those who we say do not even have the right to live?

As for the issue of cure, it's a false issue, but one which presents very similar problems. I say that it is a false issue because, not only is there currently no cure for autism, but there will never be a cure for autism. You will get cures for a number of discrete conditions that also cause autism, you may also get pharmaceuticals that make certain things easier for many people with autism, but you'll never get one pill that removes all autistic traits from everyone who has them. You cannot rewire the brain with a pharmaceutical. But the idea that such a cure is possible (and the folks at Autism Speaks, who have as much understanding of science as John Kerry has of showmanship, are actively promoting this idea) is in itself damaging.

The thing is that you then see the autistic individual as a "person with autism." That is, you see them, not as a person whose personhood includes various traits, but as a person whose true personhood is obscured or hijacked by a disease. The autistic traits, which are now seen as parasitic, are repressed and given no respect. So, "look at little Johny, he is totally into dinosaurs, he knows more about them than anyone in the school," becomes, "Johny has a dinosaur fixation. Hopefully he can be cured at some future date. In the meantime, be sure not to encourage it."

Another sad fact is that many of the parents of autistic children who are involved with Autism Speaks also engage in a wide range of quack cures. Rather than say, "This is our kid, how can we help him to make the most of who he is," they say, "A disease has kidnapped our kid. We've got to cure him now!" They are not willing to wait until the cure is available in the drug store. Some of the stuff they do is fairly harmless diet based stuff. Other quackery is more dangerous and a number of kids have been killed by it. The real damage is, however, that each time these parents see their kids grow up, make progress and master things that they could not do before, the credit goes to the quackery. How sad for both the kids and the parents. Of equal concern is the fact that, having only limited resources, parents who listen to Autism Speaks may spend those resources (money and time) on quackery rather than education. So instead of two hours of speech therapy a week, the kid gets twenty sugar pills a week at ten bucks a pill. Instead of signing up for a special needs summer camp, they sign up for a two month hyperbarric treatment program.

Now, when people hear about the autistic community rejecting the notion of a cure, it is often assumed that they mean that nothing should be done to help autistic people have an easier time of it, and realize their full potential. Nothing could be further from the truth. Those who see autism as traits are usually also those who see the greatest potential in autistic folks, and who focus on the positives. These people, having high expectations of autistic people, tend to provide more opportunities for growth. Those who see it as a disease that we need to wait for a cure for, are more likely to have low expectations and to focus on managing autistic people as they are.

The bottom line is that the folks at Autism Speaks don't like autistic people. They want to rid the world of them. That's not cool.

Less alarming alarms

I'm the waker-upper in our house. My wife could sleep the clock around so it's up to me to get everyone up. Usually this is not a problem, but I have been known to be a little behind schedule in the wakeup calls, especially if the papers bear particularly engrossing news in the morning and I forget that I have a family to wake. Once, a few weeks back, I even slept in, and MK was late for school as a result.

As a fan of routine, rules and order, MK has voiced his dissatisfaction, at various times about my slipshod performance. But when we have suggested that he get an alarm clock he has always refused and retracted all his complaints. Last week we pushed him on the subject and he let us know that the reason he did not want an alarm clock is that they are -- oh, yeah -- alarming. He has a point. If it's hard to integrate sensory stuff like that when awake, how much more shocking would it be to have a buzzer go off when you are asleep, unsuspecting and unprepared.

With a little hunting we found a technological work around -- an alarm clock that plays sound effects instead of buzzing a buzzer. MK opted for the birdsong sound effect. It was a bit loud in his opinion, so we taped cardboard over the speaker (reminding me of how I would have to dismantle all of this toys when he was a tot, so as to find and snip the speaker wires) and the end result is suitably subtle.

I guess this would count as adaptive technology of the very lowest order but now, at least, MK no longer has to rely on the vagaries of his father's coffee and newspaper routine.

I have to say it

I am pretty sure that many people will not like me for saying it, but I have to say that I am greatly disturbed by the blogosphere's handling of the Katie McCarron tragedy. A woman killed her daughter. Sadly, it happens quiet often. There are several hundred cases of filicide each year in the US. One person killing another is always a miserable business, but in the case of a parent killing a young child, it is particularly horrific and always indicative of deep mental disturbance. I don't mean to say that the legal standard for insanity (which is to say, lack of responsibility) is met, but in almost all cases the perpetrators are mentally ill.

Because, in this particular case, the motivation for the crime was the fact that the victim was autistic, much of the autism community has taken it up a cause célèbre. My perception is that the perpetrator has become a stand-in for all those who see autism as a disease to be eliminated, rather than a grouping of traits to be understood and respected. This is not a legitimate substitution. The level of vilification clouds the issues and makes it harder communicate with the supporters of associations such as Autism Speaks at a time when communication is very important. Further, by treating filicide as an extension of a common (and I believe misguided) approach to raising autistic children, the act is given a perverse legitimacy and brought within the realm of the conceivable. That is not beneficial. It adds to hysterical thinking, which we already have too much of in relation to autism.

To be frank, and more psychological (or, if you prefer, spiritual) than political, I feel that focusing excessively on such unnatural acts is unhealthy for us as individuals and as a community. There can be, for me, no celebration, no satisfaction, and indeed no justice when a child is killed. The situation is beyond repair. There can only be sadness.

I know that my views are not representative of society at large or the autistic community. It is normal that philosophies differ. That said, I encourage my fellow bloggers to move on from this tragedy without unnecessary public lingering. The blogging community is part of an important battle ground for public opinion on autism. This was recently shown by the success in changing the NYU Child Studies advertising campaign. It is ongoing in regard to the Judge Rotenberg School. There is much to talk about, let's get on with it.

Please note that, while I felt that making my opinion known was worth the risk of perhaps loosing the respect of some of my friends, I have no desire to engage in debate nor certainly to start one. I have, therefore, turned off the comments for this post.

Books and Bookish Things

MK is 12, but I still read to him before bed. Actually, it is more accurate to say that I read with him before bed. He likes to keep his eyes on the text and correct me if I misread something, but mostly he likes to comment and discuss. It can often take fifteen minutes to get through one page, as we stop three or four times to discuss motivation, ramifications and a host of tangential facts. It has always been the case that MK is at his most loquacious, and is most interested in, and capable of, narrative, at the very end of the day. For years, 80% of the things he said in a day were said in the 30 minutes before sleep. I have no idea why this is. Nowadays he can wax talkative at all times of the day -- though not reliably -- but the before bed slot is still special.

Recently, MK and I read The Thing About Georgie. It's a pretty good read. One of the things about Georgie is that he is a dwarf -- by which I don't mean that he is a fairly tale creature, but that he is affected by dwarfism. It good story about being in the fourth grade, learning to share affection and making new friends. It's also a story about being a kid with a handicap and how that makes Georgie feel about himself and his place in other people's eyes. There are no saccharine ugly-duckling moments. Georgie just gets on with life, faces the same obstacles as other kids, as well as some unique to dwarfs, and gets over enough of them that everyone is feeling good about life by the end. It's interesting to talk to MK about this different kind of disability. He sure does give good advice when its for someone else.

Now we are on to Elijah Of Buxton, which is actually a bit hard because it is written in dialect, so it's not ideal for folks with language issues, but MK so loved Christopher Paul Curtis' other books, The Watsons Go to Birmingham - 1963 and Bud, Not Buddy, that we are sticking with this one, dialect and all.

We also read a little bit of non-fiction (usually just ten minutes) before bed. We did a kid's atlas a while back, which was good for all kinds of discussion. As an offshoot, MK has now moved on to memorizing what he considers to be the most pertinent facts from the CIA World Factbook. Other than flags, the most pertinent facts are the populations of the countries and languages spoken there. He seems to be very concerned as to whether or not English will turn out to be a good language to have learned. It's an obvious worry that it is only the third most popular language on the planet, and so MK is constantly looking for more information that reassures him that English alone is enough to get by in most places. It's something like how buyer's regret can cause us to spend all kinds of time looking up expensive products we just bought so as to convince ourselves we haven't shelled out for a lemon. He can tell you every place in which English is an official language (there are a lot more than I ever imagined that use it for at least one of their official languages) as well as those places where it is widely spoken. Did you know, folks, that only 89% of the US population actually speaks fluent English. Meanwhile, French, which all good little Canadians are forced to study, is only spoken by 23% of the people. This laughably small percentage has led MK to suggest that, when he grows up, he will work towards having it banned. I think I felt the same way at his age.

Currently our non-fiction book is The Kids Book of World Religions, which is a very good read, even for non-kids.

At the adults-only end of the spectrum, I recently read The Curious Incident of the Dog in the Night-Time, which was very good, but I felt that, if you already know about autism, it can be a bit like reading a tourist guide describing the place you grew up in -- nice, but a bit obvious and oversimplified in places. I read his other adult book (A Spot of Bother) first. I think it is much better. I really enjoyed that.

In among all this book reading, I have actually started writing again. At various times in my life I have put my hand to a fair bit of fiction (though I have never tried to get published). I was too distracted to do any for the past few years, but recently, with things on the home front going so smoothly, I find my enthusiasm rekindled. I even joined a writers group here in my new city and went to my first meeting tonight.