Tuesday, December 23, 2008

Let's Get Physical

This seems to be next on the list. Language and logical thinking are more or less taking care of themselves. (With the weekly language therapy and continuous attempts by this less-than-skilled father to use the mediated learning approach to problem solving.) For example, our current bedtime story is 'Call of the Wild', which is filled with language that I find challenging but which MK loves. We are also back to getting As and Bs on the report card, without modification of the curriculum.

But physical things are still hard. Shoelaces are there, but are still a challenge and often require multiple re-dos. Handwriting and basic drawing are OK (at long last) but putting sheets into binders is more difficult. The other day walked MK through replacing the light bulb in his room. That was hard. It would be relatively tricky for any 13 year old, but it was very hard for us. Unfolding the ladder, getting fingers onto those tiny retaining screws, handling the light bulb without breaking it, fear of electrocution, boy-oh-boy. Coaching and explaining through every millimeter, I felt like a puppeteer with his strings crossed. But we did it in the end and MK felt justifiably proud. This evening he applied all that we had learned about screws to assembling the Christmas tree stand, and he felt even prouder of that.

It seems to me that this is a window. We are on the cusp of competence and what I want to find is some way to help MK across to the other side. He doesn't have to get signed by the Knicks, but I do want him to be confident about where his body is in space and to know how to use it for ordinary day-to-day stuff. So I am going to start looking for a new hired gun.

Wish us luck.

Friday, November 14, 2008

No 'cures' here

Recently, I've been posting about how great we are doing, and we are doing great. But I thought I might mention that, great as we are doing MK has not morphed into some boring neurotypical kid.

He is still exceptional in his interests and his skills. For example, earlier this year, after really struggling with basic geography (what is the difference between a city and a country) he learned basically all the countries in the word, what languages they speak there, what their populations are and many of the capital cities. Recently, he has included real-time weather to his stack of knowledge. So, in the middle of a conversation about any other unrelated topic, we are likely to hear, "By the way, it's getting cold in Copenhagen. Close to zero. It might snow soon." or "It mostly cloudy in Halifax today."

And there are still some unexpected things that are tricky. We read together for about 45 minutes every night. The first 20 minutes are spent on science type stuff. The other night I found out that our guy didn't understand the difference between a river, a lake and an ocean. For a geography buff, that's unusual. He'll probably soon be regaling us with tales of how many liters per hour various rivers around the globe flow at.

This post doesn't really have a point, other than to mention that one can be doing well and still have a unique take on life and still need help with some things that other people might find easier. It's all good.

Thursday, November 13, 2008

Giving Props

We had our IEP today and spent most of our time taking things from last year off. His teacher said that she had a hard time believing that all of the challenges and supports listed on last year's IEP were real. Just goes to show you something or another.

One thing in particular stuck me when we were talking about how much our guy enjoys gym (two years ago he hated it above all things). What stuck me was how his teacher described the great support MK got from his classmates in gym class. T0 be frank, MK is not good at ball sports. He is probably almost as bad at it as his father. But he gets nothing but encouragement from the kids in his class. It is, apparently, the same in other class activities, and that, I am sure makes a world of difference. It's quite remarkable from kids who are 12 and 13 years old.

I commented on this to the special ed coordinator. She, of course, pointed out that the attitude of a class is very much determined by the teacher. But she also gave some of the credit to a program that they have been running in our school called The Roots of Empathy. They start the program in kindergarten. The other thing that contributes is the school Social Responsibility goal. They talk about sharing and helping and contributing to community and environment at every assembly. The halls are full of social responsibility posters made by the kids, showing things like friendship and inclusiveness and caring and so on. And I think it makes a difference. It seems that when you set out with the deliberate goal of teaching kids to be nice, it works. And and that, in turn, has other payoffs, like allowing very nervous autistic kids to feel relaxed enough to engage in academics and even things like gym.

That's not to say that these programs are a panacea for all things. In the same school, two grades ago, there were teachers who encouraged and rewarded competition above all things and who felt that students who learned differently could not learn together. As our school system gives principals an exceptionally weak role, with almost no input into specific classroom instruction (because the teachers and the principals belong to different unions) we have to count on luck to deliver us good teachers.

That said, the past year and a half have been very good for us, and they have been good because of wonderful teachers. So, though I can't name them by name, and they don't read (or even know about) this blog, let me give props where props are due. Thank you good teachers. Thank you good programs. Thank you good principals.

Sunday, November 9, 2008

Salad Fork Days

My parents were both British. What is more, they were both university profs. What is more, they were both brought up in working class British homes that lived in horror of being confused with the undeserving poor. So for my parent's children, table manners were not optional. "If you want to learn how to eat like a lorry driver," they would say, when a knife was raised too high or a fork turned the wrong way, "you are welcome to study it after you have mastered conventional manners."

While I don't fully share their enthusiasm, it is true that life is easier when you know how these things are done.

But with MK, the straight forward approach taken by my parents didn't work that well. First of all we had years and years of that sort of advanced picky eating known to all those with kids on the spectrum (foods must be white or golden brown, no two foods must touch each other, no one food may contain two textures, etc.) . That meant that our definition of a successful mealtime was one at which MK ate. If we were succeeding in getting food into him, we were not going to snatch defeat from the jaws of victory by bringing up the question of how the food got into his mouth. Then there was the question of extreme sensitivity to being corrected (we are talking deep sadness and tears in response to something like, "It's best not to put your elbows on the table, Buddy."). Then there was the whole mechanics of manipulating anything held in the hand, which applied not only to knives and forks, but also pencils and scissors and glue sticks (but not, of course, to game controllers). And last, but not least, there was the whole communication thing. At the age at which most kids are getting the fundamentals of table manners, we were still doing the you/me confusion thing. If you've never done it, you cannot imagine the hours of entertainment that come with a phrase like, "Pick up your knife," when your interlocutor has "your" and "my" reversed. (By the way, it is impossible to explain you way out of this reversal. If you attempt to do so, you will find yourself in an ad lib recreation of "Who's on First." )

And so it is with great pleasure that I announce my latest finding in the science of child rearing: these things can be learned even at the ripe old age of thirteen. We now have our ducks in a row. MK's favorite foods now include escargots and mussels. The sensitivity is at a level where composure can be regained in a matter of seconds after a helpful suggestion. MK can tie his shoes and color within the lines. And, so long as I am willing to substitute "truck" for "lorry," he has no trouble understanding standard instructions regarding table manners.

Just today he managed to eat his whole meal with his fork in the proper, inconvenient, downwards orientation.

Good things come to those who wait.

Saturday, September 27, 2008

Umm, this parsley is really good!

That's what MK said the other day as he scooped up the green garnish on the top of his macaroni cheese. The idea of Mr. White Foods Only saying that about any green food, let alone a fresh, highly textured leaf that was sprinkled on another food, was unimaginable as little as a year ago. But then, we were out celebrating his happy completion of a one-week sleep away camp with his school, so we already knew that things can change.

It's all good. He's growing up and learning fast. Every day, the language gets better, richer. He goes at it with gusto these days, starting sentences with phrases like, "Let me tell you the story," or "Let me describe it for you." That might sound pretty ordinary to some people, but to me it's more impressive than the moon landing. If you read any of my old posts on MK's language, you might remember that MK's mum is from Japan and is not that good at English, so she and I speak a lot of Japanese at home. MK never picked it up. To date, his Japanese vocabulary has consisted of: yes, hot, cold and yummy. Today, out for dinner with a Japanese friend, we interrupted MK in a long story he was telling to offer him the last shrimp on the plate. MK's response? "Taberarenai." Which is flawless and complexly conjugated Japanese for, "I couldn't eat it."

You just never know what you are going to see when.

You know, I haven't written much lately (though I am still reading everyone's blogs) because it has been almost all success around here, and that makes for boring reading. But I recently read a few parents in the press and some new blogs that I found going on about what their kids will never experience. It is, first of all, unnecessary. A lot of these folks are talking about kids who are just a little behind. Sometimes we are talking about kids who, at age four, are still speaking in broken sentences. MK still wasn't talking in sentences of any kind at age six or seven, but we knew then that he would be fine, just because we knew that there are a lot of ways to grow up.

The other thing that strikes me about these cries of "He'll never ..." is how short-sighted it is. Granted, MK will never experience the joy of having his Little League team win. But there are plenty of Little League heroes who will never experience the joy of seeing the videos that they make top a hundred thousand views, or who will never have the satisfaction of looking at a globe and knowing that you can name every country on it, describe the flag and list the languages spoken there. Life has so much potential for experiences of every kind, including an infinite list of experiences that none of us has even though of yet. How can people worry about whether or not a few arbitrarily chosen ones will be on list for their child?

We all want our kids to be happy. In my mind, the biggest determiners in happiness are love, overcoming and luck. Love and luck are self-explanatory. People might have different theories about how they work, but I am sure that our influence over them is certainly not simply bounded by the hand we are dealt when we are born. Overcoming is the one that is most under our control. It is the result of decisions made, and of effort, and of habit. The joy of overcoming is available to everyone and at almost any point in life. I have the pleasure of working with people who have recently left lives of addiction and crime in the streets and in mental hospitals. I also hang out with some people who have had more conventional success -- people with art in galleries, books for sale in bookstores. I see exactly the same joy of overcoming in both groups (it's a bit more concentrated in the fist group, given the time in their lives at which I meet them). I have also seen suicidal sadness in both groups. I have also seen both extremes in ordinary, middle class people living what would generally be called normal lives.

In no way do I believe that having things to overcome is a recipe for misery. In all three of the groups that I mention here, the only reliable predictor of trouble is not wanting to try. So, if I got to talk to those people who are locked in the "My child will never..." mode, I would remind them that never is an awfully long time and, long before we get there, we pass through a myriad of opportunities for both sought-after and unimagined successes.

Friday, June 27, 2008

Whoda Thunk It

And so ends the second school year since we moved. The difference with the first school year was like night and day.

What was the difference? The teacher assumed competence. That really was all there was to it.

Sure, MK was officially assigned an aide this year, while last year he wasn't. But in practice he got much more attention from the aide in the classroom last year than he did this year. In fact, half way through this year, MK said that he found the aide annoying, so we changed policies so that the aide would only give help when MK specifically requested it, while last year he was working one-on-one with an aide for nearly half the instructional day. The real difference was that the teacher, a young man fresh out of college, assumed competence and insisted on full inclusion.

Right from the start, he wanted MK, and every other kid in the class, participating fully in all the class activities. He started the year off with a sleepover in the gym. MK was so not into that. His anxiety levels were maxed out as soon as he heard about it. But his teacher felt it was important that everyone attend, and so we set up a home/school plan to get MK used to the idea over the two weeks we had before the actual sleep over date. It worked. And MK had a great time!

At a recent IEP meeting, his teacher told us that, over the course of the year, he hadn't modified or adapted any part of MK's curriculum. He made sure MK had support where he needed it, and MK did need quite a lot of support, but the goals and expectations were the same for every kid in the class, including other special needs kids who require more support than MK.

He even applied this approach to French. We live in Canada now (moved here from NYC) where French study is mandatory. Last year MK hated it so much that his teacher took him out of the class. We had asked that he be included in the class but excused from answering questions and turning in assignments, but his 1950s style teacher put him out in the hall with an aide doing unrelated work. That suited MK fine, as the very mention of French was enough produce a near allergic reaction. What is more, MK was convinced that: a) learning a word in French would result in forgetting a word in English; and b) studying French carried the risk of one day waking up as a French speaker who was no longer able to speak any other language. The fact that his mother and I speak French and haven't lost out other languages did nothing do dissuade him of his hypothesis. In the end, given how much trouble MK has had with the English language, we decided not to push it.

So this year, when we did his IEP, we asked that his goals be to meet regular academic standards in all subjects but French. As it happened, this year, rather than the homeroom teacher handling the French instruction, they went to a separate classroom to be taught a native speaker of French. We expected MK to be pulled out, or at least have his program modified, but his homeroom teacher stuck to his position that all kids should at least try to participate fully in all activities. It was about half way through the year when MK said something we never expect to hear from his mouth -- "You know, French is kind of fun."

Now the year has ended and, unlike last year, when the teachers refused to grade his work and put asterisks instead of letter grades in his report card, MK came back with a report card filled with Cs and C+s. He was disappointed to see that he had gone from a B to a C+ in math because of the difficulty he had with geometry (protractors are not his thing) but that was made up for by -- you guessed it -- a B in French. You could have knocked us down with a feather.

For a kid who, at the beginning of the school year, did not know what the word "neck" meant in English (as you can see in the dialog at the very end of this post) it's an amazing accomplishment. I'm very proud of MK for getting over his fear of French and for his stunning progress in language in general this year. Part of it is down to his amazing SLP. Part of it is down to MK's own hard work. But we owe much of it to a teacher who decided, as a basic policy, to assume competence and give all the kids in his class the opportunity to stretch and grow in ways that no one was expecting.

Saturday, June 14, 2008

The earlier the better?

I was reading a New Scientist article on autism today. I think I may have commented on this one when it first came out. It made the rounds of the blogosphere, in part because it had a side bar on neurodiversity. I just happened to read it this morning again, in the print version, because I have been insanely busy for the past six months and, as result I have a stack of New Scientists, and Economists and Grantas sitting there waiting to be read, and this is one of the first weekends when I have been able to spend the morning reading instead of working.

Anywhoo, the gist of the article is that kids are getting autism DXes earlier and earlier and therapists are reporting more good outcomes as a result. That's all very well and good. I'm all for getting people all the education they need as soon as possible. But it makes me wonder.

In the not to distant past (like, say, last year) the conventional wisdom was take a wait and see attitude to developmental difference. That meant that some kids who might have benefited from early intervention didn't get it. But I am sure that, in many cases, after waiting and seeing, it turned out that the kids were fine and they bumped along without anything particularly special being done for them. (If such outcomes were not commonplace, doctors would not have been taking a wait and see approach.)

Now, if people aren't waiting and seeing anymore, and kids are getting the intervention as soon as they show signs of deviance, is it surprising that many of these kids have "good outcomes"? Say you've got 100 one-year-old kids in 1980, and ten of them seem odd. When these kids are six, let's say two of them are autistic. So they try some intervention and, at age ten, they are still autistic. Now, in 2003, you 100 one-year-old kids, and ten of them seem odd. You give them all intervention. Five years later, the kids are six years old and it turns out that two are autistic. The only difference is that the therapists tell us that, because we started early, eight of the kids had remarkably good outcomes. Yay!

I'm not saying that is the only thing that is going on, but I bet it counts for some of it.

This would not be an issue if it were not for the catastrophizing of autism. I'm all for docs and other folks monitoring child development and offering supports where it seems they could be useful. But once they stick the autism label on, they are likely to jump right into 40 hours a week of ABA and who knows what kind of other stuff. I'm not sure that's such a great idea.

I guess I will never know how things would have turned out it we had started with massive interventions when MK was a toddler. Maybe he'd be even more wonderful than he is now. Maybe he'd be even happier and comfortable about his place in the world. Maybe. But I can't help thinking that normal childhoods carry some advantages too.

And MK is autistic. He's had a bazillion hours of interventions one way or another, anyway. If the kid in question were not even autistic, just developing at their own pace, it would seem even more odd to take them away from time that could have been profitably spent crawling around the living room and viewing the world from the back of a supermarket trolley.

I don't know if I'm making any sense. Maybe I'm just rambling, in celebration of the fact that I have time to do so for once.

Tuesday, June 10, 2008

Nice Story

I heard a cool story on the Colbert Report. You can watch it yourself if you go to comedycentral.com and look for the Colbert Report with Alan Rabinowitz. They have all their stuff available to watch online. Unfortunately, I can't link to it because they route things regionally, so you would have to go and find it yourself.

Anyway this story is of Alan Rabinowitz who is a hotshot zoologist who has a new book out about saving tigers and other big cats from extinction.

Apparently, when he was a kid, he had a very severe stutter, so bad that he could not communicate. He had a rough time at school in the special ed class. But although he could not speak to people at school, he could speak to his pet animals at home in his room. So animals were his confidants. And it occurred to him, as a kid, that, like him, animals had thoughts and feelings, but could not speak. So he promised his animals that, if he could learn to control his stutter and speak, he would be their voice. He has obviously succeeded. In his fifties now, you could just detect the stutter at times. You could also detect that he was running additional meta-processing to be able to produce fluent speech.

It's a simple story of a guy with a language disorder who found in his own condition a way to look beyond himself and to challenge himself and who, without being cured of his disorder, went on to do amazing things that he really enjoyed.

I liked it.

Saturday, June 7, 2008

Understanding, it's a two way street

Recently I've been reading a lot of blog posts and comments about messed up things that teachers and other people do to autistic kids. It sucks when people are mean to kids. It's really common and it really sucks. I think we should all work in our communities to reduce the amount of mean stuff done, and particularly when it's done to kids.

Where I differ with a quite a few posters is on how to achieve that goal. I keep hearing that the offenders should know better (I agree) and should be fired (I might agree). But I also hear that it is ridiculous to talk about these people needing support (I don't agree) and that they should not have to be educated in order to understand such basic things (I don't agree).

People are not all capable of doing everything perfectly all the time. That's just what humans are like. We suck at a lot of things. Even important things. We miscalculate social situations and fail to consider the impact of our actions. We say things that are different from what we wanted to say. We act inappropriately. Even as adults, we need to be reminded and taught how best to behave in challenging settings. There are things that we cannot do well without support.

Given that this is what we are working with, what kind of sense does it make to expect people to perform in the way we've decided they should without support, accommodation and patience? I'm not saying that we should not have high expectations of educators and others -- we should. I'm not saying that we should let abuse stand -- we should not. I'm saying that we should recognize the limited abilities that all humans have and work with those abilities and limitations so that everyone is functioning at their maximum potential, rather than fixing a standard and treating all those who fail to meet it as subhuman and unworthy of further engagement.

It's time we take what we have learned about human nature and apply it to all humans.

Sunday, June 1, 2008

Thinking about thinking about thinking

... or meta-metacognition if prefer, is what we been engaged in lately.

MK started talking late (sentences at around age six, basic level conversation that could be fairly easily understood by strangers at around ten) but he has been making up for lost time. It's not just a matter of vocabulary. It's all about how easily he accesses and manipulates references and mental constructs. It's a very odd thing to be a part of. It's an alternate route to linguistic competence, but it's also, necessarily, an alternate route to understanding the world. I'd love to be able to describe what I see, but it is simply too complex.

Anyhow, all this linguistic power has made it possible for MK to communicate increasingly sophisticated ideas (and a whole bunch of exceptionally silly stuff too -- you'd never know he was a latecomer to humor). One of the things we are discovering is that MK is exceptionally self-aware. He can now tell us exactly what is bothering him (This aide is giving me too much help. She makes me feel like I'm doing things wrong. When she asks me if I'm OK, it means she thinks I'm not OK.) . More recently, he can tell us what things feel like. MK tells us not only what it feels like to be startled, thanks to an over-responsive nervous system, but the frustration of having had his body overreact when, intellectually, he knows that the startling thing (sudden noise, sudden movement, ball in the air, shift in tone of voice, etc.) is no big deal. He also talks about his own rushing thoughts ("like a hurricane in my head") when he get anxious.

This is, of course, painful for me to hear. But, though MK faces more difficulty with some things than his peers, I'm sure there is not a child out there who has not felt the same things on smaller scales, and there are many who feel as much distress or more, but who are unable to observe the processes in play, much less describe them. People who are unable to analyze their unpleasant experiences generally respond in the form of action, sometimes useful, and sometimes not. Our guy is lucky in that, being able to define it, he can choose how to respond to it, and can talk it through and get input.

I should mention that MK is generally a very happy guy. Dancing with joy and falling down laughing are a part of just about every day, and it would be unusual for more than a few hours to go by without some experience being labeled as the best xxx ever! Anyone who has spent any time with him would describe him as having sunny disposition. He's just hyper responsive.

So recently we are talking and about how we think about our own thoughts. In my own life, I have had quite a bit of success in controlling my own often unrully mind by applying techniques such as REBT. I also take meditation instruction and have learned a few tricks there, such as pausing and distancing ("Wait a minute, let me think.") and objectifying ("What am I thinking?" and "What do I want?"). We toss around these and many other ideas for dealing with thoughts and reactions. Then MK tries them out at school. Then we talk about how they worked and what might work better.

It amazing the things that one can talk about when talking gets easy.

Tuesday, May 20, 2008

Why are you teaching me?

This is what MK asked me this weekend when he was about fifty feet from shore in his own kayak. We'd been out a few times last year in a two-man boat, with me doing almost all the paddling, but this was our first trip this year and his first time ever in a solo boat. There had been a fair bit of bumping against the dock on the way out, and when he did start paddling, the boat didn't go where he wanted it, which lead to a constant stream of instructions from me. Until, that is, he asked me why.

It was an excellent question. There he was, away from the shore, floating by himself. He was either going to figure it out or he wasn't.

"OK," I said. "You're right. I'm sorry. You paddle how you like. Just come over here."

"Why do I have to go over there?" he wanted to know. "Why can't I go this way?"

There was no reason, of course. So he paddled where he wanted to, getting better at it with each stroke. And I paddled, first at a short distance, and then where I wanted -- he can swim and was wearing a life jacket, after all. Then we joined each other again and paddled across the lake. By the end of an hour, I had to work hard to keep up with him.

It's a tricky thing, this parenting business. I want to be there to teach and to facilitate, so that he can learn things that don't come naturally. But what he learns without me teaching, he learns faster and better. I hope that, in these situations, which will be increasingly common, I have the sense to stop giving instructions and keep my boat at a distance even when he does specifically demand it.

Monday, April 21, 2008

Don't mess with the neurodiverse!

Sooner or later, folks are going to learn.


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

Friday, April 18, 2008

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.

Thursday, April 3, 2008


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.

Thursday, March 20, 2008


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.

Monday, March 10, 2008

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.

Monday, March 3, 2008

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,

Monday, February 11, 2008

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.

Saturday, January 19, 2008

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.

Friday, January 18, 2008

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.

Wednesday, January 16, 2008

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.