That's all folks.

I've been using this blog to narrate my own experiences as a parent of a child on the autism spectrum. That has included my own thoughts about how society thinks about autism as well as a lot of discussion of my son's achievements and challenges. Now that MK is older, his story is less and less mine to tell. The other day he headed off to the movies with a friend from school -- just the two of them. Today, he shaved for the first time. MK is doing great. He has a shining future ahead of him. His story is his own to create and to narrate.

I will continue to read the blogs I have been reading and, if I get a real hankering to talk about my own story, I will start a new blog.

In the meantime, I will leave you with one of my favorite songs from my favorite autistic musician.

Different Ways of Seeing Things

I bookmarked this article some time ago, meaning to blog about it when I had the chance. The reason I wanted to respond is that it brings up a way of looking at autism that is different from my own, and which I have difficulty getting my head around, but which I think is very common.

In the article, the author asks whether or not her son has recovered from having autism. It strikes me as an odd question, similar to asking whether a person has recovered from being gay or being white.

Part of it is attributable to the author being misinformed. For example, she says:

Seven years after the initial diagnosis, Leo has achieved significant gains in areas thought to be unattainable by even high-functioning children with autism spectrum disorders.

He attends a regular school and is socially engaged, articulate, creative and performing at grade level with a tutor for reading and handwriting. He understands and can express complex and abstract thoughts. He can empathize. And he has friends he cares about and who care about him.

What she describes is, in fact, bog standard for kids identified as having high-functioning autism and the last three sentences are true of kids all over the spectrum, though the modality in which those things are expressed may make them invisible for some observers.

In the attempt to differentiate autistic from non-autistic, they focus a great deal of attention on friendship:

I answered hours of questions focused on Leo's ability to make and keep friends. I said Leo had friends, even a best friend, and asked for play dates without prodding from me. That's key: While many children with autism spectrum disorders have friends, according to Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center, they don't seek out peer relationships. "Having an aunt or a music teacher as a friend doesn't count," she said.

This such an odd thing for a modern professional to say. My son has had many friends, some of them autistic and some not. Of course he has asked to play with these kids and I know that his autistic friends have asked to play with him. It is true that the asking part has not always been entirely smooth. For example, a phone call in which two young autistic kids, both with language issues, arrange to meet is a more difficult thing than it might be for two typically developing kids. But to confuse this disability with lack of interest makes no more sense than assuming that people with spinal injuries do not want to move around.

Of course, from my point of view, I would not consider a person who was a loner and felt more comfortable with their aunt or their music teacher as someone in need of any particular recovery, so the whole discussion is somewhat lost on me.

Our guy has grown up very nicely so far. He has had some very real challenges, which have been best met by some kinds of teaching that were developed for autistic people. I'm glad that he having an easier time with language (in fact, he's having a lot of fun with language these days, in a way that many typically developing kids do not) and that it is easier for him to deal with sensory input and challenging social situations. But I don't ask myself if he has recovered. When I see him with a newspaper, or plowing though his math homework with gusto, or spending countless hours in deep concentration on his art, or monitoring the weather in 30 different cities, or keeping up with his ever widening gang of online friends, I see an autistic kid and I am proud.

I don't know whether autism is going to be a conscious part of MK's identity as he finishes growing up and makes his own way in the world. Life is long and people and fashions both change. He may or may not find that word a useful way to describe himself. If he does, I really hope (in fact, I insist) that it will be a source of pride. That will be easier if people stop asking whether happy, well adjusted autistic people have recovered and simply accept them as happy, well adjusted autistic people.

This fun video doesn't need much explanatory comment from me.

Adapted Instruction

I am happy to announce that I went up for another ski lesson yesterday with adaptation to suit my needs and it went much better. First, I made it a private lesson so that I could get what I needed. Second, I dealt with the language thing in advance by requesting a native speaker of English. Next I told the teacher what troubles I could have in terms of learning new things for my body. I also told her what my strengths were in terms of learning.

We ended up working with just three exercises for the whole two-hour lesson, all of which were aimed at one single teaching point. There were lots of explanations as to why we were doing what we were doing, just as I had requested.

At the end of two hours my control had improved so much I felt like I was using some new kind of equipment. I'm going to go again next week with the same instructor.

I'm glad that being MK's father has given me some practice in insisting on, and arranging for, suitable and effective education.

Ski Dunce

I'm sorry, this is another skiing post.

Apart from skiing with MK, I've been doing a lot of solo skiing. I guess you would say that I've turned into a a bit of a junkie. I'm 46 which is late to be learning and, as I see it, I only have a few years to really master this sport if I want to ski at a fairly high level through my fifties. Basically, I have to do most of my falling now, before the age at which it starts to cause injuries. So I have been going up the hill a few times a week and working hard on my technique. Nonetheless, I've been stuck. There are things I can't get beyond.

So I took a lesson. It was a group lesson, for advanced skiers. I've taken the very same lesson before, as well as some intermediate lessons on the same mountain. I knew, or thought I knew what to expect.

I should make it clear that, while I have good balance, do a lot of sport and I'm quite fit, I am not athletically inclined. I'm awful with aall ball sports, for example. My coordination is poor and have a lot of difficultly positioning my body in space. I university, for example, I had to drop out of my tap dancing course (I was a theater major) because I could not keep up even with the basic introductory drills. Still, when I put my mind to it, I can learn.

But not today. There were three of us in the group and we had two instructors. From the first exercise, I had trouble getting it. you had to two tow different things with your two different hands (things that one never does with one's hands when skiing) and a third thing with the legs. If I would have repeated it two or three times, I probably would have been OK, but we moved on right away. Next, they had us lay in the snow with our feet in the are and turn them. I didn't turn mine right. I'm still not sure what right would have been. Fresh on that failure to grasp the theory, we went on to apply it in practice. I didn't do very well at that either. I was still trying to apply the first exercise, which was about edging, and in this one we were not supposed to use our edges. Having failed to do things properly with or without edges, the second instructor, taking pity on me, started correcting my posture. With my new posture on my mind, my top/bottom separation (your shoulders are not supposed to move when your legs move) was lost. This was noted and offered as an explanation for my general uselessness. By this point, we were certainly in need of an explanation, as I had gone, in the space of an hour, from a confident skier, zooming down the black slopes with gusto, to a stiff, awkward novice who might have appeared, to an outside observer, to be trying out skis for the first time. At one point, I skied into a fence at about three miles per hour. Both instructors felt for me. They said they could see that I was afraid (I probably looked that way) and apologized for the steepness of terrain that was tediously flat. Over the next hour, they all but ignored the other two students and tried countless additional explanations and approaches and exercises meant to help me get it, but I got worse not better.

At the end, I thanked them for their patience, but I should have also thanked them for the opportunity to experience what MK so often has to live through. This was input overload, which had a cascading effect of shutting down my existent skills, requiring more and more mental effort just to stay functional. There was even a language component. The instructors were Russian and, as the lesson progressed, I stopped being able to understand their English. Classically, they were well intentioned, and as an expression of that, they placed more and more demands on my overloaded systems. They developed theories to account for what they saw and added to the complexity of the situation. All of this in front of my fellow students, giving a nice social edge to it.

I'm pleased to say that I did not ski off in the middle of the lesson (it was touch and go, but I really did want to learn). Once it was over, I went and got a coffee and made a list of the eleven things that they were asking me to do simultaneously. Then I went off and practiced two of them for the rest of the day (mixed in with a bit of regular skiing). I can report that I did in fact get some millage out of the two things I was working on. Nonetheless, it was a demoralizing experience. And I'm a grown man with all sorts of psychological supports and techniques at my disposal to help me shrug it off. I can only imagine how it must feel to someone younger and less able to see the experience from a distanced perspective.

I'm wondering if I should just go ahead and rename this blog: What Skiing Teaches me about Autism.

Following through through following

The other day MK and I went skiing. If you've read this blog before, you'll know that skiing has been a real boon for MK and that, though it was a challenge for him to learn how two years ago, once he got it, he really got it.

Nonetheless, by the end of last year we hit a plateau that MK was unwilling to go beyond. He had learned good parallel skiing style, including hockey-stops and all the rest, and he was comfortable with all those moves on the bunny slope or relatively flat parts of the green runs. But as soon as the pitch of the terrain steepened, MK would revert to the snowplow (a technique in which you point the tips of you skis together, making a triangle shape, which lets you move very slowly). That's a sensible thing to do when you fear you might loose control, but to be safe and have fun on steeper terrain, you really have to use parallel techniques. MK and I had quite a few talks about this, and I did a lot of coaching, and while he was willing to do a few parallel turns on the steeper stuff under duress, it seemed we had come to an impasse.

Since I am writing this post, you have probably guessed that something worked, and that we hit on a way of following through. If you paid attention to the title, you will also know that this was done through following.

What happened was simple. We were going done a really flat part of a green run and I was complimenting MK on his nice parallel turns. Then I said that I liked them enough that I was going to try to copy them. So I got behind him and skied exactly in his tracks, going where he went and turning where he turned. Amazingly, MK started making parallel turns all the way down, including the steeper parts, where he had always switched back to the snowplow before. When we got to the bottom, he told me he felt better about his skiing with me behind him. So we did it again, this time he decided to make it tough for me. He started skiing faster and speeding up the turns to try and throw me. On the third run he was actually carving (short fluid turns) and in a couple of places he did, indeed, make it impossible for me to stay in his tracks.

So there it is. He learned something and I learned something.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.