Autista

That's all folks.

2009-04-12T17:49:00.000-07:00

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

2009-03-18T18:10:00.000-07:00

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.

2009-02-23T11:07:00.000-08:00

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

Adapted Instruction

2009-02-08T12:07:00.000-08:00

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

2009-01-31T19:58:00.000-08:00

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

2009-01-24T07:55:00.000-08:00

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

2008-12-23T23:14:00.000-08:00

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

2008-11-14T18:19:00.000-08:00

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

2008-11-13T19:04:00.000-08:00

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

2008-11-09T23:20:00.000-08:00

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!

2008-09-27T22:52:00.000-07:00

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

2008-06-27T07:55:00.000-07:00

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?

2008-06-14T23:31:00.000-07:00

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

2008-06-10T23:58:00.000-07:00

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

2008-06-07T00:08:00.000-07:00

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

2008-06-01T22:44:00.000-07:00

... 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?

2008-05-20T21:53:00.000-07:00

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!

2008-04-21T18:30:00.000-07:00

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

2008-04-18T23:01:00.000-07:00

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

2008-04-03T12:36:00.000-07:00

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

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

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

Benvenuti!

2008-03-20T20:22:00.000-07:00

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

Milestones, they're not where you think

2008-03-10T19:39:00.000-07:00

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

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

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

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

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

Winter Blues

2008-03-03T20:27:00.000-08:00

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

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

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

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

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

Why Hillary Is Wrong to Support Autsim Speaks

2008-02-11T16:50:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Less alarming alarms

2008-01-19T23:17:00.000-08:00

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

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

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

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

I have to say it

2008-01-18T11:20:00.001-08:00

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

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

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

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

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

Books and Bookish Things

2008-01-16T09:35:00.000-08:00

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.

I can do this!

2007-12-22T09:42:00.000-08:00

Last winter, one of the few bright spots in my life was skiing with MK. We'd just moved to a new city where the teachers had decided to reenact the 1950s, and nearly every day in their period-piece involved the new kid crying. There were also meetings in which people who had found their Teaching Certificates at the bottom of cereal boxes told us that MK (who had got all As and Bs in his last school) could not be taught in "a classroom setting," and certainly could not be given marks of any sort. He couldn't even be given a gentleman's C in gym, because he "cowered" when people threw balls at him and his teacher was only trained in teaching gym to "normal kids."

I must admit that our adventures in skiing did not start off particularly smoothly. I know that they do offer adaptive lessons for folks with developmental differences, but MK was understandably not up for learning anything from strangers at that point so, after 20 years away from the mountains, I became a ski instructor.

The first day was spent demonstrating that the rope-tow is a stupid invention and discovering that it is possible to slide down a hill on your bottom, even if pieces of fiberglass have been attached to your feet. The next time out we went further afield to a hill that had a magic carpet, which is sort of a flat escalator that you ride on, skis-and-all, so that novice skiers can be moved up the slope in much the same way as travelers are moved between terminals at airports. This was a definite improvement, but it did not change the fact that MK had to negotiate a sloping ice-field on long slippery sticks, using nothing more than the poor coordination and dyspraxia he had inherited from his father. On top of this his "instructor" had no memory of how people actually lean how to ski. What I can tell you is that it is surprisingly difficult to keep one's own balance when locked in a bear-hug with a sliding eleven-year-old.

When we had thoroughly exhausted ourselves, we retreated to the lodge where, having been in unusually close contact with the actual snow for most of the past few hours, we both found ourselves suffering from post-nasal drip. After taking care of my own nose I started walking MK through his paces for this activity. I had to explain about unfolding the Kleenex, positioning it, closing one nostril, blowing, wiping, switching nostrils --- you know the drill. And while I was doing this, with the odd bit of manual intervention, I noticed a girl of about MK's age watching us with her mouth agape. I could read what was written in the thought-bubble over her head: How could it possibly be that this grown boy did not know how to blow his own nose?

Her unspoken question resonated with me, and brought up another one: What kind of idiot tries to teach his son to ski when he has not yet mastered nose blowing?

At that point, I knew in my heart that I should relinquish my unrealistic expectations and stop torturing the boy. But I had said that we would have another crack at it after our hot chocolate, and it would have seemed weird not to do that, so we zipped up and headed back to the magic carpet. As we rode up the hill, I explained the "snowplow" technique in detail -- something I had omitted from our lessons so far -- and pointed out the kids who were making use of it. And that was it. MK got off at the top and snowplowed down. Then we got back on and did it again. By the end of the day we had mastered the chair lift and knew the terrain of two proper green runs.

Over the winter MK grew to be a good fast skier who was fond of jumps and even ventured down some intermediate level blue runs. It became our weekly antidote to school and, as I said, one of the few bright spots in a storm of unexpected difficulties.

Since then, much has changed. The teacher with the teaching style that I associate with straight skirts and beehive hairdos has been replaced with by a bright young man who is more interested in content than form and some very happy aides with wonderfully positive outlooks on life. MK is once again earning good marks in all his subjects and this last week made a batch of Christmas cookies for his classmates. When I asked him if there had been any left over, he replied, "Yes, and I gave them to my other friends -- the ones who are not in my class."

So things are looking pretty rosy, but there was still a special feeling yesterday as we made our first trip back to the slopes this year. We started with an easy slope in the beginners area. MK had been a little nervous and had been going on and on about his poles and how he did not remember what to do with them and how he didn't think he could ski if he had to hold them. But after we got off the chairlift and MK had cut cut his first couple of turns down the hill, he grinned and shouted over to me, "Hey, I can do this!"

For the next five hours we confirmed that this was, in fact, the case, all over the mountain.

Yip, yip, yippy!

2007-12-19T14:19:00.000-08:00

We did it! The NYU Child Studies Center listened and pulled the campaign. This shows, once again, that we can make change and it does make a difference what we say and do. I think that the Autistic Self Advocacy Network played the key role in this victory and they deserve particular thanks, but I was also amazed at how so many people came together with one voice over this. We should be proud of our community.

Tick, tick, tick

2007-12-13T11:56:00.000-08:00

I still haven't heard back from Dr. Harold S. Koplewicz (Phone: 212-263-6205) about the Ransom Notes advertising campaign for which he bears responsibility. I am going to be charitable (and optimistic) and guess that the reason he has not called me back is not that he is a coward, but that he has been so flooded with letters, calls, emails and petitions, that he could not possibly respond to us all. Let's keep it up. Letting them know this is unacceptable is good, but getting them to pull the campaign before it causes lasting damage has got to be the goal.

Has anyone posted a list of the staff at the NYU Child Study Center? I'm wondering if mailing them would be another way to exert pressure. My guess is that they are all good people and would be sickened by this campaign if they were aware of it.

Ring, ring

2007-12-10T12:07:00.000-08:00

I gave:
Dr. Harold S. Koplewicz
Phone: 212-263-6205
a call today.

He was out, but his secretary seemed willing enough to connect me, so maybe I'll get a call back. I want to ask him how I should explain the Ransom Notes poster to my son if he should happen to see it. He's a child psychiatrist, so he should be able to explain the best way to lessen the trauma that reading an add like that would cause. If you know someone on the autism spectrum, why not give Dr. Koplewicz a call so you'll be prepped on how best to help if one of these billboards come into view while you are with that person. If you are on the spectrum yourself, maybe you have some ideas you could share with Dr. Koplewicz, so he'll be ready when people like me call up asking for advice.

Chance to Change the World

2007-12-08T12:59:00.000-08:00

OK, this is it. Your chance to make a difference. I'm talking about the NYU advertising monstrosity. You can read about it here, here or here. You can find out how to take action here. I urge you to do so. In particular, I urge you to telephone the people in question. If you can't do that, fax them. If you are rich, send them a FedEx. Ordinary letters are good too.

Fortunately, we no longer live in NYC, but when I think about how I would explain a poster like that to my son, I get very angry indeed, because I know that there are other parents who will, in fact, have to explain these posters to their autistic kids. The people responsible for need to hear from everyone, now.

I also encourage you to make this a subject of your own blog post.

It Just Came Out

2007-12-07T18:03:00.000-08:00

Recently MK is more fully able to explain what he is thinking, but some things that he says just don't make sense, and when I ask about them he tends to get quite upset and say, "It just came out. I don't know why! I wish it wouldn't."

Today I left him in a video game store for a while and, when I came to get him, I came up from behind and put my hand on his shoulder.

"Sorry!" he blurted.

"What are you saying sorry for?"

"I'm not sorry for anything. It just came out!"

This was really bugging him, so I explained that it wasn't that unusual to find ourselves saying things that don't reflect what we want to say. I also mentioned that it happens quite a lot to lots of very smart autistic people. So we decided that, whenever that happens from now on, MK will just have to say, "It just came out," and we will both know what it means without him having to explain any further and we'll just completely forget it and move on.

We've tried it out two or three times since then and it's working smoothly so far.

What do you tell a newly hatched curebie?

2007-11-30T19:51:00.000-08:00

That's not a rhetorical question, suggestions would be very much appreciated.

Here's the thing. I'm in this group for parents of kids with autism. It's a small group and everyone in it is really great in terms of attitudes. Recently there is a new person who has not actually shown up for a meeting but who has been posting links to things she's discovered on the email list. You can see her progression as she has posted links to various trashy books, then more and more biomed stuff and then a link to Generation Rescue. At that point I had to speak up and point out that there are risks, including death, associated with the treatments promoted with that website. At that point another new person chimed in an said that, as far as she knew, only one child had been killed by chelation and that thousands of kids did it safely every year.

I could, of course, go ballistic on these guys and, while I'm at it, bring up the whole issue of the gross disrespect that the curebies they are so impressed by show towards autistic people. The thing thing is though, that I don't want to scare them off. They are new to the whole business and they are optimistically exploring an avenue that gives them hope. If I point out, even if ever so politely, that they path they are wandering down is dangerous and evil, they will probably just leave the group. On the other hand, if I sit quiet, other new members in the group may end up following the "great finds" that this person keeps sharing. They may even get the impression that the group as a whole endorses that kind of thing (silence is consent, don't you know).

I have probably completely alienated this particular individual anyway, by pointing out the risk of death thing, but the situation is going to present itself again, and I want to have policy for dealing with it. I see it as a kind of a, "Do we negotiate with North Korea?" type dilemma but perhaps there are some simple (or complex) answers that I am overlooking.

Does anyone have any ideas?

Faster and Faster

2007-11-27T22:30:00.000-08:00

That's how the language thing is going for MK. For a while after he had a very rapid advance in his rate of language acquisition, it seemed to slow down. In fact, it did slow down. But some other things started happening.

First, he began accepting questions about things that he said. It used to be that if MK said something and I asked him for extra details, or clarification or anything of that sort, the response would be a shouted, "I said, (insert whatever it what he just said, repeated verbatim)!" That's if I was lucky. A grunt of frustration and an end to the conversation was equally common, if not more so. But a month or so ago MK suddenly started answering these questions with the information requested. It's really quite disconcerting. I keep asking questions and waiting for the shout, and it doesn't come. I just find out what MK means and the conversation goes forward. Odd. There is almost no guess work required on my part. It almost take the sport out of it.

More recently, he has even started lacing his speech with extra information before it is asked for. He goes forward, pauses, fills in back-story or explains who the protagonists are, just at the point where the information becomes necessary. It's real-time theory of mind based discourse. It's kind of cool.

In the past few weeks the vocabulary has been shooting up again with daily double-digit gains. Also, there is this thing where, if you explain a new word once, he just remembers it. I've got to tell you, that is extremely convenient.

That's not to say that we are without linguistic hiccups. Yesterday, when I asked him if he know what the fives senses were, he answered, "Of course! A nickel." Irregular and intransitive verbs are still a bit irregular and intransigent. And just because MK is developing an ordinary style of discourse, that does not mean that topics of conversation have followed suit. We are still told repeatedly about the statistics for death an injury in amusement parks around the globe, for example. (Globally speaking, they are up in 2007 over 2006, in case you were wondering.) And sometimes, it just breaks down and the whole communication through speech thing doesn't work for a while. I know from my friends on the Autism Hub that this is no big deal. We just drop it and hang out. I'm always up for that.

Cures in Perspective

2007-11-20T21:56:00.000-08:00

I was at a parent meeting today and one of the people there had recently moved to Canada from China. She was new to everything in the North American autism scene and, when the term "biomedical" came up someone had to explain what it meant.

She dismissed it, saying that in China there were an unlimited number of treatments and cures available but she had never availed herself of them because she didn't want to put her son though all of that when there was a good chance that they would not work.

The sorts of treatments she was referring to were, of course, traditional Chinese medicines but I realized that these were essentially the same as the detoxifying foot baths, complex diets and drugs that we call "biomedical autism treatments." Both are folk medicines, directed at people with little knowledge of science and supported by anecdotal reports from satisfied patients.

For some time now it has seemed to me that there was something futile in the battle to convince the biomed crowd with evidence and logic. Looking at the movement in this light -- as a folk medicine movement -- the futility of this attempt appears even more apparent.

This is Sparta

2007-11-05T14:54:00.000-08:00

What MK likes to do is edit videos. He would happily spend 16 hours a day huddled before the computer watching and producing YouTube Poop. He chops up scenes from his favorite cartoons and from games, and rearranges them to make something new. Most of it is extremely repetitive (big surprise there) and sometimes hard for me to fully appreciate (apparently not so for his peers, as the videos he has made have had 75,000 views on YouTube in the past six months). He did one yesterday that I particularly like. I think it's the kind of 80s technopop sound that make it accessible to me. It is, it seems, a riff on another video montage to the same music, but I like MK's version better than the original.

By the way, you definitely want the sound on for this one, but the volume is set a little high, so if you are at work, you may want to have your hand on the volume control.

Illusion Explained

2007-10-30T18:55:00.000-07:00

Sorry to have left this picture up here without any explanation. I was just using the blog as a bulletin board to tack it up. It was the follow up to comments I made on Whose Planet Is It Anyway. You see, my esteemed fellow blogger, the Autistic Bitch From Hell, posted a link to an article about moving version of this. The article said that the dancer spun in one direction for some people and in the opposite direction for others.

The thing is that, when I watched it, it spun first in one direction and then in the other. The timing seemed random. Looking at the comments on the main article, I noticed that I was not the only person to have spotted the truth. It was, in fact, quite clearly spinning in both directions with a random timer determining when the direction would shift. Gullible people would see it moving in one or the other direction and think that, because different people saw it at different times, there was some kind of weird perceptual thing going on, when in reality it was just a bit of cleaver programing.

I was so convinced of this -- after all, I had seen it with my own eyes -- that I posted a comment to that effect. Then it occurred to me to take it apart and find out how the trick worked. So I did.

It turns out that there was no trick. It's an animated gif that presents a 36 image sequence in the same order each time. The still bellow is one of the images. My brain just happens to processes that sequence as moving in both directions, and just happens to reverse the direction it thinks it is moving in every few seconds, in a way that looks random.

What is really fascinating about this is how absolutely sure I was of the veracity of what I saw. It did not fit with the explanation I had been given and, say what you like, I had seen it with my own eyes.

You know what this reminded me of? MK's teacher from last year. She'd seen what she had seen, and you could talk until you were blue in the face, she had incontrovertible evidence in the form of her own observations that things could not be as MK's parents claimed.

The next time I set out to educate someone, I'm going to try to keep in mind that seeing is believing.

I don't usually do this but....

2007-10-29T14:52:00.000-07:00

You've got to read this post!

This entry in chaoticidealism's Reports from a Resident Alien says so much of what needs to be said so well, including this wonderful aside:

"(Digression, but what's so important about a "normal life" anyway? The President doesn't have one; neither does the bum on the street corner; neither did Beethoven or Luther or Joan of Arc. I don't have a normal life; but why would you want a normal life? Go to school, get married, work, have 2.5 kids, retire, and die. How is that any better than any other life, simply because more people, at least in America, live like that than any other way?)"

Go enjoy it, if you haven't already.

Who is running the Hub?

2007-10-23T11:29:00.000-07:00

Does anyone know? I know Kevin has turned it over to someone, but I don't know who. I've never been able to find any contact information on the Autism Hub site itself. I wanted to point out to whoever is running it that The Beach on Autism Island has been hijacked by a porn site, which is probably not the kind of content that the Hub wants people being directed to. Any ideas about who to write to?

What's in a name?

2007-10-07T00:43:00.000-07:00

Learning the names of the kids in his class was a big challenge for MK last year. They don't take attendance at the beginning of each day in this school, so name learning is harder than it was at his old school. At last year's IEP meeting MK's aid suggested that this year, she take pictures of everyone in the class so that MK could work on learning their names.

She did that and then, at home, we printed the pictures out and made flash cards out of them. The actual memorization took quiet a while. MK is good at memorization (go ahead and ask him any fact contained in the Pokedex if you don't believe me) but he has an aversion of deliberately learning things. He considers it unnatural -- like a sort of violation of his head space. Apparently, it's one thing for knowledge to appear in your head in a natural manner, but another to try and force it in. I can kind of see where he is coming from, but this is one of those cases where I take the very nuanced parental approach of, "Oh, yeah. Tough." Actually, in this case, I bribed him. A couple of weeks later he learned the names that go with all 30 pictures and received his bribe.

This has been really good in terms of talking about what goes on at school. It is also our theory that it will: i) make it easier for him to think about his classmates as individuals, which hopefully will ii) make him more likely to treat them as individuals, which in turn would iii) predispose his classmates to treating MK like an individual.

It seems to be working out. The other day at MacDonald's we bumped into three people from his school. He greeted each of them by name, even though only two were in his class (so knowing the third kid's name was a bonus). Tonight, we met yet another classmate at the video store and, once again MK responded to "Hi, MK," with "Hi, XX." He then went even further by actually asking the kid what movie he was getting. The appropriateness of it blew me away. The other thing that really impressed me was that, while MK asked this question with his back turned to XX (as he is wont to do), XX not only answered, but didn't seem to mind having an exchange with the back of MK's head. Looks like we may be having some iii) going on already.

Late Bloomers, Loners and Sensitive Types

2007-10-04T09:27:00.000-07:00

When was the last time you heard one of those expressions used? These words from my childhood seem to have disappeared from the language and been replaced by various medical terms. Jitterbugs, handfuls and dreamers have all been replaced by ADHD cases. Rowdy kids who talk back now have oppositional defiant disorder. One reads about three year olds being diagnosed with social functioning levels equal to 1 year and 8 months. What outstanding accuracy! How precisely we have come to understand human development. The path that leads to (presumably homogeneous) adulthood has been drawn so narrowly that any child who does not march straight down the statistical center is plastered with labels.

In my son's class last year, the teacher confided that there were three kids with diagnoses and five more that needed to have diagnoses, but hadn't got them yet. That is to say that eight out of thirty (about a quarter) of the kids had pathological developmental disorders. I went on field trips with these kids, and I can assure you that none of them seemed any different from the kids I went to school with. Some were goofy, some were quiet and some you had to keep your eye on -- in other words, it was a group of thirty children.

In a meeting with some people from the PTA and the Vice Principal, we discussed "gray area" kids. I'd never heard of the problem before, but everyone was very worried about it. It seems that about 30% of the kids would not actually qualify for diagnosis under today's standards, and yet are failing to keep up academically and socially. The horror! No matter which way I crunched the numbers, the truth was inescapable -- nearly half the kids were bellow average! Whatever are we going to do?

Please excuse the rant. And, no, the next thing I say is not going to be, "All these kids need is a good old fashioned spanking." What set me writing about this was all the brouhaha over the fact that Jenny McCarthey's son, who was not developing typically when he was two (he was having epileptic seizures) was developing more typically at the ripe old age of four. We are told that, in that two year span, the young gentleman had autism and then was cured from it. How exciting.

Diagnostic labels have their uses. They help get access to services. They can predispose some people to acceptance and accommodation, instead of judgment. In some cases they can be useful in terms of giving an indication of what sort of help is likely to be useful. But these sorts of labels also present problems. First, unlike the folk-labels in the title of this post, they narrow the boundaries of what we are willing to consider as natural variation. What was once considered acceptable and even welcomed in the general community tends to be seen as something that, being pathological, requires correction. It also takes away our confidence in our children's ability to work things out as a natural part of growing up.

Recently, at a support group for parents of autistic kids I mentioned how MK still did not speak in proper sentences at age six. A parent asked me how he went from being non-verbal to his current verbal state. My answer was that he was never non-verbal, he just didn't know how to talk, and that this had changed as he learned how to talk. Of course we did what we could to help, but the bottom line is that, as a natural part of growing up, he has got better at things that were difficult for him earlier on. Kids do that.

It's very nice when a late bloomer does well but, by calling it a miraculous cure, we raise the stress levels for all the other kids who are taking their time. It's a good thing for loners to get some support in making friends, if they want it, but do we have to tell them they have a disorder before we are willing to help out? Likewise, sensitive types will benefit just as much from activities that promote sensory integration, such as swinging, swimming and bouncing on a trampoline, whether we refer to it as therapy or just getting out there.

We've come a long way from the days when intervention was limited to curt demands that kids snap out of it and quit acting up. Hopefully, as we move forward, we can drop the notion that everything that benefits from help and understanding first has to be considered pathological.

Music to My Ears

2007-09-30T00:54:00.000-07:00

I don't often listen to music because, although I really like music, I can't do anything else very well when it is on in the background. So, for me, listening to music is only possible when I am relaxed enough to sit around doing nothing but listening. After my last meeting with MK's teacher, I suddenly find myself very relaxed. So I set up an iTunes account and started downloading. I got a lot of stuff by David Byrne. He's pretty well my all time favorite musician. (I once saw him perform with just an acoustic guitar in a small church in Brooklyn -- major high point in my life.)

Anyway, listening to his stuff this time, I remembered that I had heard about him being on the spectrum. So I Googled that and I came up with this video by Christschool. You've got to watch the interview at the end. The cadence and logical/narrative structure is soooooo familiar to me. It is any surprise that I like this man's art?

More Good News

2007-09-27T20:30:00.000-07:00

In October we are going to Japan (that's good news, but it's not the good news I'm talking about). The thing about that is that it comes right when fall IEPs are usually scheduled. So I went into the school today to ask various people whether they wanted to schedule the IEP before or after our trip. The VP and the Resource Coordinator felt that things were going really well, so there was no rush and we might as well have it afterwards.

I was OK with that, but I had one reservation. Last year, MK's teachers had refused to give him letter grades in anything but math, and I do not intend to allow that to continue. I particularly did not want to let the IEP meeting slide and find out at the meeting that this year's teacher also wanted to withhold letter grades. I have lined up a legal challenge to use if the school tries that again, but these things take time to implement, so if I was going to be getting a lawyer, I wanted lead time.

So I went to the teacher and asked what he thought about the timing, saying that, if he didn't think MK was keeping up academically then we should have the IEP meeting earlier rather than later, but if he thought MK was more or less keeping up (which, by definition means eligible for letter grades) we could schedule the IEP later.

Imagine my surprise to hear the teacher say that he wanted the IEP meeting sooner, rather than later, not because MK wasn't keeping up, but because he was completely up to speed in all areas, his behavior was really good, he is happy and engaged in class, and last year's IEP doesn't cut it anymore because he's doing so much better than that. (To quote Sweet M, who was herself quoting Austin Powers) Oh yeah, baby, that's what I'm talking about!

As I have blogged, MK has made great progress recently and is doing better in general, but he's still a particularly unique young man with a number of challenges. The big difference is that this year he has got a teacher who doesn't mind the "inappropriate" questions, or the unusual postures, gestures and facial expressions that his teachers complained about so much last year. He's eager to look at what MK can do, instead of obsessing on what he can't do, or what he does differently. And that's all it takes. It's just takes an open mind (... that and the one-to-one aide that MK has this year, but let's not start talking about details that might detract from an otherwise highly poetic argument).

Sixteen Bits

2007-09-24T19:39:00.000-07:00

Kristina, over at Autism Vox, once asked how are you and your autie alike. I had a bunch of things to say about that. But there is one way in which we are different.

MK is required to eat two or three mouthfuls of vegetables at each meal. On days other than the days on which carrots are served, these naturally fall into the category of foods that MK really hates. There used not to be any hope of getting him to eat from a plate that had been contaminated by non-approved foodstuff, but MK is growing up and will now try just about anything on request (he doesn't always succeed in swallowing, but he does try). MK always leaves these veggies until last. Not me. I leave the yummiest morsel to the end. I always want the meal to end on a high note. And I am no different when in comes to reading.

Every day, I read the blogs on Autism Hub and everyday I leave Whitterer on Autism to the end. I know I'll be left with the fine aftertaste of particularly good writing and a positive attitude. So, when Mcewen herself tagged me for the Eight Random Things meme this week, the last thing I wanted to do was to risk looking unappreciative by replying with the cold and boring truth that I did, in fact, already post one such octet back in July. Having reviewed the rules, I see there is nothing against repeat performances. Nonetheless, knowing that --lacking star power-- my own re-tagging of previously tagged people is unlikely to be met with much indulgence, I have decided to forgo that part of the meme. So, without further ado, here are eight more things:

1. I don't own a car. I usually rent one on the weekends, but during the week I am a cyclist.
2. I am a political junkie. For example, I had downloaded the Supreme Court Ruling on Bush v. Gore within ten minutes of it being published and sat in bed guzzling it down the way other people might read the last pages of a mystery novel.
3. I don't like team sports, either as a spectator or a participant. (Mostly because I am really bad at them.)
4. The country that I would most like to visit for a holiday is Cambodia.
5. I am exceptionally good at peeling potatoes. When I peel potatoes in public, people gather around to watch. I'm not kidding.
6. More than once, people have turned off sound systems when I have tried singing karaoke.
7. My father taught me how to plow with a horse, fell trees, take care of honey bees, build fires, navigate at sea with a sextant, make candles, catch fish with my hands and all sorts of other things that I never actually need to do -- but I feel confident of my chances of survival if modern civilization were to come to an abrupt end for some reason.
8. My desk is a terrible mess and I loose my reading glasses several times a day.

Compassion: your mileage may vary

2007-09-23T14:38:00.000-07:00

Recently, Joel, whose blog I read regularly and very much like, wrote a post at NTs Are Weird about what should be required of autism advocates that included the statement, "If I laugh at people who don’t exercise, because they are unathletic, I’m also laughing at people who are unathletic for other reasons..." This is an extreme position. By the same logic, I would not be able laugh at a foolish decision made by George Bush because I would also be laughing at people who make foolish decisions due to an intelectual handicap. Similarly, I couldn't titter at old ladies dressed in clashing colors for fear of offending the color blind, or rib friends who invested in condos in Florida in 2006, out of respect for those with dyscalculia. In fact, taken to its logical conclusion I could not even look down on people who look down on other people, because that would be unfair to psychopaths.

Not that there is anything wrong with that.

There is a lot to be said for seeking to act in a way that causes the least offense and the least suffering in others. That's not generally how I hang (for example, see my other blogs: george-bush-is-a-moron.blogspot.com, old-ladies-who-crack-me-up.blogspot.com and funny-florida-flippers.blogspot.com) but I have plenty of respect for those have chosen that path. The Dali Lama and Jesus come to mind, but there are plenty of ordinary, run-of-the-mill nice, friendly people who live by the same lights. (For that matter, my son is one of them. If I rail at divers engaged in unsafe and illegal maneuvers in the road ahead, he will chime in with, "It's not their fault. They probably just don't know how to drive very well.") I'll be the first to admit that compassion in word, deed and thought makes the world a more pleasant place and does wonders for the general psychological wellbeing of the compassionate themselves. I just don't see the need to tie it to disability. I think that Joel and some other people in the disability rights movement may be hanging too many coats on one peg.

If you are going to be understanding and accommodating of every difference out there, there is no reason to perceive this solely in the framework of disability rights. You can go ahead and just be a really nice guy in general. By the same token, there is no need to see this sort of generalized compassion as a prerequisite for advocating for specific disability rights. I know a quadriplegic fellow who is a very effective advocate for wheelchair access who disses his opponents by saying things like, "Unlike them, my disability is from the neck down." This is very rude to people who have a genuine intelectual disability, but the person in question still gets ramps built. He's just a jerk. That's all. Just as one can be friendly and autistic, or be physically disabled and be athletic, one can also be a disability advocate and a jerk.

People are complex and imperfect, disability advocates are no different.

@#!&*@#$$%!!

2007-09-17T20:05:00.000-07:00

No, the title is not indicative of my mood, but rather a polite way of expressing what MK has been saying recently.

As recently as March, MK was very upset by swearing. Hearing people swear, and especially children (even on TV) would bring him to tears. I think it might partially have been a cognitive dissonance thing -- if it's against the rules, then why on earth are they doing it?

At the same time, he was fascinated with it, especially as he was hearing more and more of it in the school yard. I myself don't swear often, but not often is not the same thing as never. And I have always explained that swearing is an easy (or even lazy) way to add impact to language and express familiarity.

In his typical way, MK began experimenting by editing videos. He learned from his YouTube Poop colleagues that much fun can be had by taking a perfectly innocent phrase, such as "That's a nice red dress," and adding censor beeps, so it comes out, "That's a nice *beep* dress." MK produced dozens of such videos. There are grammatical and semantic issues in this editing trick, so sometimes his videos sounded natural and funny, and sometimes they made no sense. I gave him feedback and explained some of the theoretical underpinning of four letter words, and he kept experimenting. Within about three months most of the beeped videos made sense.

As he was doing this, MK also began experimenting with actually saying some of these naughty words. I had given him permission to say them around me, as long as no one else was present to be offended. Having never in his life blurted out so much as a single syllable, there is not much risk of him doing so with off-limits vocabulary. There are few people who spend more time weighing their words than my son.

At first he only said them in the car. We would be talking, he would get half-way through a sentence and then stop and ask me to roll up the windows. After a few furtive glances around to make sure there were no lip-readers in nearby cars (or perhaps perched on rooftops or overpasses with binoculars), he would whisper the expletive, ask me if it was grammatically correct, and then sigh like a golfer who has just completed a difficult putt.

By now he's relaxed a lot. He'll come down and watch Jon Stewart with me, just for the hilarity inherent in potty-mouthed newscasters. He has even developed certain amount of panache in his delivery. Yesterday, he asked me what "contemptible corpuscle" meant. I explained a length, covering etiology and implied meaning. He listened to the whole explanation and then said, "So it's basically a stupid f****er."

I'm always amazed by what I end up considering as progress.

Zoom, Zoom, Zoom

2007-09-15T19:34:00.000-07:00

Last week MK's teacher announced a class sleepover in the gym for team-building and fun. Not surprisingly, MK did not like the idea. His aide got him out of the classroom before he started crying, so he didn't loose any street cred, but the idea was pretty frightening for him.

Notwithstanding his legitimate objections (playing with those kids will be hard work, he reminded me) we felt it was a good opportunity get familiar with the other kids and get to know his teacher. In fact, I blogged here, last year, to the effect that the school year should start (rather than finish) with informal social events for the kids. We were also pretty sure he could handle it. His anxiety has been exceptionally low and -- get this-- his aide was going to be there. I think that is amazing! How many school-provided aides volunteer for sleepover duty?

We all told him that we thought he would have a good time and that it would be a good idea for him to go, but that the decision would come from him. We discussed it every day for four days, going over worries and objections and offering vague bribes (oops, I mean incentives). On Sunday he decided to cut a deal and offered to participate in exchange for a much-coveted video game. After that, reluctance turned to enthusiasm, and by the time the day rolled round, he was feeling sorry for the few kids who were not allowed to attend for religious reasons.

He did very well indeed and enjoyed the whole thing with no panic and only a few patches of minor worry. He joined in all the activities and games and came out of it feeling happy and confident.

MK has one friend who he has regular play-dates with now (amazing to think that his first one was just two months ago) and, as it happens, this friend had the same teacher last year, but did not benefit from a start-of-year sleepover. So the friend asked MK to come to a sleep over at his house. MK, who would not even discuss one-hour play dates, six moths ago, said, "Sure, I don't have a problem with that."

That is where he is now. In fact, he has been gone since early afternoon and his mum and I took advantage of the occasion to go and see an excellent movie (This Is England), of the short that we would never be able to see with MK. In a few minutes we are going to a restaurant (Tunisian-French) of the sort that MK would hate. Ah, bliss.

Talk Talk

2007-09-12T21:36:00.000-07:00

While I'm gushing about MK's new teacher, MK himself is not so impressed. The teacher is passionate about teaching, so he talks, and he talks, and he talks. MK is not impressed by people who engage in too much of his least favorite form of communication. He says that he cannot understand a lot of what he is saying and that he is, "Boring, boring, boring," and makes time go slow. He also tells jokes that MK doesn't get. And there are enough assignments, where the kids get to work. They just have to sit and listen.

We spoke to our SLP today and she suggested that we wait two weeks and see what happens. It could be the novelty that makes the new teacher's voice and speech patterns hard to understand.

I'm pretty sure that MK is going to have a great time with this guy, but I am reminded -- yet again -- that my idea of good and MK's ideas of good aren't always the same. And of course, when it comes to MK's education, what really matters in the end will be MK's ideas, not mine.

We'll see.

I've got to add that this is the first year where we have had this kind of feedback from MK. He has not previously been able to narrate what is going on in class an how he feels about it, so the "Oh dear, he's bored," response is actually outweighed by the "Excellent! He can tell me he's bored," response.

I think I can relax

2007-09-11T19:01:00.000-07:00

Yup. For the first time since MK started at his new school, I think that I can actually stretch out on the sofa and say, "Everything's fine." We met the new teacher today. He is a relaxed, innovative guy who doesn't believe in homework and seems much more interested in teaching students how to reach specific educational goals than in having them conform behaviorally. In his comments on MK's first week in class, he had nothing but positive things to say.

MK now has two aides: one for the morning and one for the afternoon. The afternoon aide we already knew was very good. I met the morning aide today, and she seems intelligent, organized and kind.

It's like some fairy has waved a wand and transformed it into a different school, one in which people want MK to succeed, and have the good sense and flexibility to help him do it.

Maybe this a "pink cloud" and we will be pulled up short in a few weeks, but I'm going to enjoy it anyway. The last time that things looked this good at the beginning of the year, the whole year was a roaring success. Who knows, maybe it will happen again.

Looking Good

2007-09-04T10:35:00.000-07:00

We have been told many good things about MK's new teacher, but we have never actually met him, so we have our fingers crossed. There was also the possibility that he might have fallen under a bus over the summer holidays, to be replaced by some unthinking, unfeeling schoolmarm. That has not happened. And while MK only met with his teacher briefly today, he is off to a very good start -- he asked MK to help as a math tutor for kids who find math difficult. MK came back bursting with pride, which is an excellent way to start a school year.

Cleared for Take Off

2007-08-24T17:21:00.000-07:00

Last year at this time we had just moved to Canada from NYC where MK had been doing very well in school. He had made friends who came over for spontaneous play dates, he felt confident and happy and his report card was all As and Bs.

In my naivety I assumed that this would mean relatively smooth sailing into his new school. The kids would surely be more gentle and easy going than the little New Yorkers, so MK should fit in without too much trouble. My fellow Canadians cared less about grade school academics than Americans did and, as they have no real practice of standardized measurement, they had more room to be flexible. What, I would have asked --if I had even thought to ask-- could possibly go wrong?

I could write thousands of words in answer to that question now, but the short version is: Being comfortable in one social situation does not equal being comfortable in all social situations. Children from smaller, less sophisticated urban centers are not --surprise, surprise-- always as tolerant and inclusive as their big-city counterparts. And above all, having a flexible teaching system is only of any use if you have good teachers. With no formal curriculum or standards, teachers base their evaluations and their teaching on gut feeling and, without training, gut feelings about kids on the spectrum can be extremely misleading. Another thing that I found out was that some people outside New York City don't actually have a very high opinion of it. (When the school informed us that MKs report cards and the results of his statewide tests from New York would not be taken into consideration in trying to get a handle on his overall academic competence, it was made clear to us that the wackiness of NYC made it impossible to take seriously.)

The upshot was that the kids generally shunned him and gave him a hard time, while the teachers assumed, based on his odd way of talking, his nervousness, his unusual questions and his tendency to cry when scared or frustrated, that he was incapable of keeping up academically. They then basically stopped teaching him and stopped expecting him to do things. Naturally, being marginalized by the teachers did nothing to improve MK's social standing or confidence.

At the end of the year, MK was given a report card with asterisks instead of marks in all subjects but math (math being to only subject where they used tests and MK never getting less than 80% on a test, it was harder for them withhold marks purely on the basis of social prejudice). But I am hopeful that this will change next year and MK will be given the chance to participate and receive marks just like any other kid.

That said, with little more than a week until school starts again I am actually feeling optimistic.

The first reason for hope is that we now have ground work and have established our credentials as the sort of people that you ignore at your peril. By the end of last year we had jumped through an enormous number of hoops. We had MK re-evaluated and re-labeled by local folks. I joined a local autism parents group and was coached on what to demand and who to pester at the Board of Ed. We finally got an IEP meeting with less than a month of classes left, to which we dragged a psychologist to testify that MK was neither stupid nor crazy. We also had to advocates from the Developmental Disabilities Association, who had coached me before the meeting on what to expect, and who played the role of polite but not-to-be-messed-with enforcers, both at the meeting and in follow up calls to the school. Although very little was actually decided at the IEP other than the fact that MK now has a half-time aide assigned, we did not loose any ground. By which I mean that the views of his poorly educated, ignorant and unthinking teachers, who would have liked to have his curriculum "modified," which is to say, who would have like to stop teaching him on a permanent basis, were not accepted.

The second reason for hope is his teacher for next year who, by all accounts, is supposed to be the best in the school. He is only four years out of university so, not only is he not burned out, but he may actually have spent an hour or two studying how to teach neurodeviant kids. He is also said to make excellent personal connections with his students, which may mean that he takes the time to notice what MK does and does not understand.

The next reason for hope is the aide. For the last weeks of last year, MK was given a smart and nurturing aide, who, amongst other things, maintained a Home-School Communication Notebook with us every day. MK's biggest challenge in the classroom is figuring out expectations, both academically and socially. Having an aide to make implicit expectations explicit should help a lot.

Although the schools here do not believe in standardized measurement, the federal goverment does have standardized tests for Math and English. (The school is required by law to administer the tests, but has an official policy of ignoring the results.) When MK took these earlier, he tested above grade level in math, but about a year and a half behind in English. That is not actually an earth-shattering delay, especially considering that they teach different curricula in Canada and the US, but it was enough to support the teacher's claims that he was behind, which in turn supported thier contention that he was unteachable. This week, however, MK redid his federal test and is now testing at grade level in English. Hopefully, with locally administered tests showing the MK is a kid of normal intelligence and performing at or above grade level in all measured subjects, his teacher will not insist on withholding academic instruction and marking this year.

On the social front, we are also making major progress. The rejection, shunning and teasing that MK got early on at school made him totally unwilling to risk more of it. He completely lost interest in his peers. With quite a bit of work on this end, and the very useful suggestions of MK's new aide as to who might be up for a play date, MK has some friends. I have to admit that he is not exactly enthusiastic about his peers, and generally needs a fair bit of cajoling before meeting with them, but last night he had fun at a birthday party and as I type this, he is over at another friend's house and has not yet called asking to be picked up early. If one or more of these boys ends up in his class next year, things will be much easier, and just having a few people in the school who you can consider as friends has got to be reassuring.

On top of it, MK has achieved a number of personal accomplishments over the past year. He has learned to be a good downhill skier. He setting high scores on the DDR machines in the local arcades. He taught himself video editing and has an impressive number of fans and subscribers on YouTube. All that has to raise his self confidence, which should in turn lower his socal anxiety.

All this is not to say that there will not be any challenges. Consider the conversation MK and I has this morning when he came down with his polo shirt both inside-out and back-to-front.

Go take a look in the mirror and see if you can see anything that needs fixing.
(Looking in the mirror) Hmmm, is my underwear showing?
Can you see you underwear?
No.
Then it is not showing. Look at you neck. Do you see anything odd.
No.
Touch your neck.
(Touches armpit.)
That's not your neck. That's your armpit.
(Poking at his armpit with conviction) This is my neck!
Your neck is the thing that connects you head and your body.
(Taps his shoulder.)
That is your shoulder. Your neck is the part of your body that includes your throat.
(Touches his throat.)
Now look in the mirror. Do you see anything odd about your shirt there?
(Looking carefully) No.

So, in short, while there is still reason to suspect that MK's school year is not going to be entirely free of challenges, there is also reason to hope that it will be more like his grade four year than his grade five year.

Accept or Overcome

2007-08-18T10:31:00.000-07:00

Reading the Autistic Bitch From Hell, who I find to be perhaps the word's most reasonable and good natured commentator on the subject of autism, prompted me to write a few words about accepting differences. ABFH's post is about how silly it would be to take a grieving/acceptance approach to the models that psychologists and other professionals use to explain wiring differences. It's a great post, so I'll let you read it rather than trying to paraphrase it myself.

A somewhat different question is how neurodeviant kids can accept the individual circumstances of their own wiring. I say kids because, by the time we have grown up, we hopefully all know that everyone is their own person and there is little to be desired in being the same as everyone else. For some reason, however, this is not obvious to the under-sixteen set.

MK has recently been complaining about what his brain can and can't do. He talks about being mad at his brain. He says, "I wanted to, and I told my brain to do it, but my brain didn't do it." This particularly comes up in relation to medium-term memory, attention and word retrieval. It is frustrating for him to see something done by other people, apparently with ease, that simply doesn't work for him.

At the grizzled age of 44, it seems obvious to me that everyone one has varying cognitive and physical strengths and weaknesses, and that success lies in knowing your own, and those of people around you, and then using that knowledge to your advantage. For example, like MK, I misplace things all the time. Unlike MK I have specific spots where I place important things like keys, so that I will know where they are, I schedule an extra five minutes for finding things before leaving the house, and when I can't find something for all that, I take it as an inconvenience on the same sort of level as bad weather. While MK sees this kind of approach as being fine for his father, he expects better for, and from, himself.

Part of this is cultural. Kids exist in a culture where everything is expected of them. For instance, I'm not very good at math. My response is to hire a bookkeeper. If I were a kid, that option would not be on the table -- especially not during math class. (MK is very good at math, as it happens, but the principle is the same.)

The other thing is developmental. Kids are constantly gaining new skills. Often, skills will come on line as a strength that no one would ever have expected. So it's reasonable for kids to try things and hope that they will just be good at them, even if they weren't particularly good at them the last time they tried.

In other words, for kids, accepting one's differences and finding a work around, or putting those sort of tasks on the back burner so as to concentrate on one's strengths, is not always possible and may not even be well advised. For kids who are wired differently than many of their peers, the ever-shifting balancing act is particularly challenging and, for their parents, giving advice is not so easy.

Where we are at with language

2007-08-08T00:06:00.000-07:00

I just thought I might post an update on MKs language advances because I went on and on about it a few months ago and, if I were reading this, I'd be curious to know if it was flash in the pan or if it panned out. Also, I was reading about sudden leaps forward on Estee, Kevin and Susan's blogs, which put me in mind of it.

Basically the speed at which MK is advancing in terms of vocabulary acquisition has slowed down, so I am noticing a couple of new words or expressions a day, rather than dozens. On the other hand, the sudden ability to pick up and retain new words that he is specifically taught seems to be sticking and strengthening. There are still a lot of gaps. Tonight, in a sentence beginning "It depends on the circumstances," and including the words "graffiti" and "arrested" he was at a loss for the word "wall," and tried "that wallpaper place" before pointing to a wall and asking, "what's this thing called?"

This business of wanting to know what things are called is actually quite new. Today also he asked me (referring to a peer who had a particularly spectacular melt-down), "Why do we say, 'flip out'?" That idiom "why do we" and particularly the "we" in "why do we say" was particularly encouraging to hear. For one thing, it's metalinguistic exploration of the most useful sort, and for another, it implies a level of self-inclusion that I don't usually see from MK when it comes to language.

The ability to recount events in the recent past has stayed and is getting better. A noticeable change is that he has started cluing people in on the background of things that he says. For example, when describing a some particularly awesome victory, he said "Mario was on red (that means he had one HP left) and I..." Likewise, we got "There is this video I was watching, and when you play it backwards it is really funny because it sounds like ..." We never used to get explanatory parenthetical asides or scene-setting introductions.

It's interesting because, if I looked at this latest development in isolation, I would be tempted to say it represents an advance in theory of mind. But somehow I don't buy that. Theory of mind does not develop in a matter of weeks. I think it's just down to language. He's got enough spare processing power while recounting something to be able to think about what other people know in real time, and he's got the linguistic facility to be able to bring up the phrases that add the extra information without loosing track of his narrative.

So in any case, the update is: slowing down, strengthening, morphing into different things but by no means ephemeral. As evidence of this, today we on a bus engrossed in a long, wide ranging conversation and, when we came to a pause, I had to ask, "What were we talking about?"

"Changing the laws in Japan after the war," prompted MK.

"Yes, but what were we talking about before that," I wanted to know. "How did we get here?"

In fact, we got there from talking about the destruction of infrastructure in Japan in WWII, which we got to from talking about atom bombs, which we got to through talking about war as a downward pressure on population, which we got to through discussing world population growth, which we got to through talking about which was the biggest city in the world.

When you can get lost in conversation like that, you know you are doing OK.

Speaking Truth to Power

2007-08-05T18:32:00.000-07:00

Today was a day planned by MKs mother. First we went to the Gay Pride parade (MK's mom is totally into parades, while MK and I are lukewarm towards them) then we walked across town to a particular Japanese restaurant that we adults love but, once again, MK is not too hot on. Basically, MK was getting dragged around by his parents and it wasn't much fun for him.

On the way to the Japanese restaurant, MK got it into his head that we should go to Denny's. I hate Denny's and, while we are willing to take MK there as a special treat from time to time, we weren't going to give up on our planned lunch and switch to Denny's, no matter much MK insisted. To tell the truth, I though he was being uncharacteristically unreasonable, especially when we got to the Japanese restaurant and he started to cry. So I asked, him, "Why on earth are you making such a big deal about the idea of going to Denny's that you just thought up a few minutes ago?"

Then he laid it on the line. "I feel less powerful than you," he said. Wow. Now that's plain talking. That's someone who is twelve years old and starting to come into their own.

It took quite a bit of discussion before we hit on the compromise. It was MK's idea. We adults ate our Japanese lunch. Then we all walked down to Denny's where we dropped MK off to order and eat lunch on his own while the grown ups got some coffee nearby. When we came back to take care of the bill (we were going to let him do that too, but the idea of working out the tip got him a bit flustered) we found a very happy camper, who now felt at least as powerful as everybody else.

Curebies

2007-08-04T15:35:00.000-07:00

Reading DoC over at Autism Street, I had Curbies brought up to the front of my conscious again. I've never actually met a Curebie (a person who wants to 'cure' autistic people -- which is to say, make them neurotypical -- by some sort of "biomedical" intervention). I've bumped into the writing of a psychotic individual who goes by the name of ForeSam in the blogosphere, but that is as close as I have come to it.

Sometimes it seems very odd to me how much energy the neurodiversity crowd pumps into arguing against the positions of Curebies. The thing is that the arguments made by the Curebies don't make any sort of sense. It's all flat earth gobbledygook of the sort that doesn't warrant serious discussion.

The other thing that is weird is watching the videos of the people who have been "cured." These folks look as autistic as all get out me. Which makes me wonder why, if the parents are happy to have an autistic child, they bother to pump them full of malt vinegar (or whatever it is) in the first place. I imagine that the cured kids in question had more difficulties at one point and now have less difficulties, but if the parents left out the "curing" part they would have the same kid, and they would get to feel all sorts of pride in the progress that their kid made, rather than owing it all to some quack.

It's a weird world out there and hopefully I'll never get more familiar with it.

Hand-Eye Coordination: it's not what you think

2007-08-02T15:43:00.000-07:00

Different people have different takes on MK's eye contact. In past assessments it has come up as an issue, his teachers have listed it as an issue, and I have always felt it was an issue, but his psychologist does not think it is in any way underdeveloped and his tutors point out how good it is.

Recently, I've come to see that this issue is not eye contact per se, but eye to hand contact. The thing is that some things get explained by hand gestures. We say, "It moves like this," "It was about this big," "The road is really flat, then it goes up and down," "You need to put the string all the way around the outside," etc. Sometimes there are verbal cues that suggest the person we are speaking to should look at our hands, but on other occasions, we cue people to look at our hands only by looking at them ourselves. This is what MK does not get.

We will be having a conversation, and we will get to one of these hand gesture places, and MK won't look. I will do some sort of thing with my eyes (I'm not sure what it is, because I can't see my own eyes) which would cause another person to look at my hands, and MK will not respond. It makes me want to say, "Look at me," or "Look at my eyes," (those are the phrases that jump into my head) but what I should be saying is "Look at my hands."

Following on this line of thought, I notice that MK himself very rarely uses his own hands to communicate. This ties in to something Bev was saying. She mentioned that it was frustrating not knowing how to non-verbally indicate that she wanted the floor in a conversation. Analyzing my own behavior, I think it is largely down to hand gestures.

I wonder to what extent reading and using informal hand gestures is difficult for folks on the spectrum other than MK.

Dissing dissbility

2007-07-31T00:06:00.000-07:00

Recently MK has been talking a lot about how he does not see autism as a disability. His argument is that, because it doesn't cause any problems, it cannot be a disability. Basically, he's saying, "I'm OK, Jack!" And of course he is right. He is OK. There is nothing wrong with him.

On the other hand, it is an interesting question. The government in these parts shells out 22K more each year for his education than it does for the education of his classmates. He has an IEP and a classroom aide, and we expect the teachers to adapt programs to suit his needs. As he grows older, it is likely that he will continue to benefit from some adaptations. In the world we live in, it's hard to request adaptations with the justification of a disability. I wonder how this might effect MK's self image.

For my part, I am able to recognize my disabilities and I don't feel that they make me any less of a wonderful and modest person. MK does not seem to be able to accept his own mix of disabilities and abilities in that way. I read the adult autistic bloggers on the Hub and I get some idea of attitudes that can be taken to specific autism issues, but I don't yet see how I can pitch any of these attitudes to MK.

Of course, MK may not ever come to accept his differences as disabilities. There are people who do not accept their own limitations, and struggle (both successfully and unsuccessfully) to eliminate them. I think it results in a rather flat personhood but ultimately, it's going to be his call.

Special Parenting?

2007-07-22T02:09:00.000-07:00

A while back, Along the Spectrum said, parenting is not that different. I loved that post (as I do most of the posts on that blog). It struck a true cord. What parents of exceptional children do is just plain old parenting, even if there is a bit more of it – or a lot more of it as the case may be. The other day, Joey's Mom said that people should be out there telling parents not to be afraid of having kids with special needs. Good point. After all, we get into the whole reproduction thing, not because we want the end product (adults), but because we want to enjoy the process of being a parent. So, given that you want to parent, which is to say that you either like parenting or you think that you are going to like parenting, it doesn't make any sense at all to be afraid of the dice roll bringing you more parenting.

That said, in the opinion of one dad, over at One Dad's Opinion, parents of an autistic child have to make determinations every day as to, "At what point does our responsibility as a parent become overshadowed by our child's ability to behave a certain way?" This introduces what is for me a difficult question, when do we make allowances, accommodate needs that we might like to see our children go beyond, or even actively embrace and encourage behaviors that we might try to limit in other children? To get a better idea of what I am talking about, you should read Steve's whole post, and then come back here.

When trying to sort out what I think about all of this, my thoughts are also influenced by people such as Mom26children at What are they thinking? who said, recently,

Just because you have an Autistic child does not give them free reign to disturb others in a public situation. If that was the case, we could allow any person to disrupt any situation.
If you want your Autistic children to be taken seriously, you must take your Autistic child seriously.

How can we prepare our Autistic children for their future and being accepted by society if we allow them, as children, to act inappropriately in public?

Just because your child was given the diagnosis of Autism does not mean you have to stop parenting your child....

Another parent of an autistic kid who blogs in a similar vein is BeAGoodDad, over at Be A Good Dad, who says, "Raise your child like he is your child whether he has a special need or not."

This brings up another kind of question. You see, whether we should accept and accommodate differences in our children or attempt to bring our children in line with our own preconceived expectations is intimately tied up in what we see as the role of the parent, regardless of whether the child has special needs.

Specifically, some parents see it as their incontrovertible responsibility to impart to their children the morals, standards of behavior, habits, attitudes, knowledge and wisdom that they themselves were given or acquired. These parents generally believe that you must use every resource at your disposal to make sure your kids are good, well educated kids for as long as they are kids. Once they are adults, they will be free to do as they like. Commonly, they also believe that what they teach their kids as kids, will allow them to be truly free and independent when they are adults.

But this is not the only way of looking at parenting. There is also the view that all children are born free, competent, moral, and already equipped to gain mastery of all the skills they need to be fulfilled as humans. This kind of parent is more like to see the parent child relationship as a friendship or partnership in which the parent's role to keep the child safe and to facilitate access to the things that naturally interest the child. They may argue that most of the evil we see in people comes as a result of unnatural attempts at molding and manipulating children into useful cogs in society's machine and that, if allowed to develop naturally, they will become all that they can be and then some.

Of course, no one adheres strictly to one group or the other. Everyone uses a bit of both philosophies. But, for the record, I use a lot more of the first philosophy than the second.

The reason I bring this up is that, when we look at a piece of advice such as, "You shouldn't force socialization on your autistic child," or "Your autistic child needs to know exactly what is expected of her in terms of behavior in public," it's useful to know which philosophical camp the person giving that advice is coming from. If they are coming from the second camp, they probably wouldn’t force socialization – or anything else for that matter – on their NT kid either. Likewise, people in the first camp usually think that everyone, NT, ND adult and child, benefits from knowing what is expected of them.

What this means is that approaches to parenting children that are presented as approaches specific to parenting autistic children may depend less on in the child in question than they do on the parent in question. And that is OK. As BeAGoodDad says, "Raise your child like he is your child whether he has a special need or not."

I guess the reason for my talking about this (I'm working it out as I type, as you can probably tell) is that raising an exceptional child makes me second guess myself. It makes me question my policies and my decisions. And when I see other approaches pitched as being best "for autistics," I wonder if I should be doing things differently. But I think I will try to soldier on with the choices that have I made terms of how to parent, without changing my mind every other day, because I'd probably be just as wrong if I had chosen the other way.

That said, having narrowed down the field a little bit, I think there are some special considerations for parents in the first camp raising kids with autism, but I'll have to save that for another post.

Kristina's Meme

2007-07-21T10:18:00.000-07:00

Kristina at AutismVox listed ten ways in which she and her son Charlie are the same and said it would be OK if other people want to be copy cats. I'll bite.

1) Both MK and I think words are important and care about how we choose them.
2) We are both concerned with social justice and public policy. It's one thing that can get us both angry and one topic of conversation which will draw either of us in, no matter how distracted we are by other things.
3) Chocolate!
4) We both have good balance and poor hand eye coordination.
5) Neither of us feel the cold very much, but we do less well in the heat.
6) We cannot find any object that is not actually in our hands and, on occasion, we have both been known to ask after the whereabouts of objects that have actually turned out to have been in our hands.
7) We enjoy learning about and imagining the lives of people who live under different circumstances, such as people from different countries or from the past.
8) We both spend quite a bit of time publishing things online and viewing other people's online publications (for me it's blogs and for MK it's YouTube).
9) We both like to cook.
10) We are both considered odd by the general public.

Video I Hadn't Seen Before

2007-07-18T21:21:00.000-07:00

perservating perservating perservating perservating

2007-07-17T13:06:00.000-07:00

The other morning, as MK headed out on our bikes I suggested that he adjust his gear.

"But Dad," he shouted, "I want to speak!"

"OK," I said, not mentioning how successful many people are at changing gears and speaking all in the same bicycling trip, "Speak."

"Sponge Bob says 'Uuurgk wauuuuruha neemit whyob fittlemuurk.'"

MK's mind was full to bursting with preservation. That meant that all further conversation (other than politely saying, "Oh, really" when verbalized at) was going to be impossible. Talking to MK when he is on an internal preservation roll is like trying to get the attention of a man who is watching a beautiful girl walk by. It's all "Huh?" and "Uh, huh, what was that?"

This most recent flavor is an outgrowth of his rapidly expanding linguistic capacities. He has found that he can take his favorite scenes from cartoons, use video editing software to play them in reverse, memorize them, and replay them in his own head, with or without audio output, whenever he likes. I am, of course, duly impressed by the uniqueness of this skill, but at the same time, I have mixed feelings about being urgently told "Uuurgk wauuuuruha neemit whyob fittlemuurk."

It's the same way I felt in years past about being told "Joe's Pizza!" or "That's it, I" or "and now for, uh" or words of similar wisdom upwards of a hundred times a day. It's a mixed feeling because, on one hand I can see it is fun – wildly, amazing fun, in fact. It seems to be fun on the same sort of level as drinking a bottle of rum and waterskiing naked. And I'm reluctant to pooh pooh that kind of joy. On the other hand, for me personally, it's very hard to get far in a conversation that starts with uuurgk wauuuuruha neemit whyob fittlemuurk.

The simple solution is to put my own selfish desire for coherent conversation on the back burner. After all, most of the time all I want to do when riding the bikes is make small talk. I'm a big boy. I can live without small talk. But there is another side to MK's audio preservation. When MK gets going like this he resembles a fourteen-year-old kid who has just smoked a large doobie (or so I gather by way of general hearsay). Four or five verbalized uuurgk wauuuuruha neemit whyob fittlemuurks in a row and he cannot steer his bike. He cannot walk straight and, much of the time is prone to the clichéd falling down laughing and/or rolling on the floor laughing. Earlier this year we got clinical confirmation of the fact that playing back tapes in his head can lower MK's measured IQ by nearly two standard deviations. And as a single bout of these sort of giggles can go on for the most part of a day, that can cause problems, especially on school days.

I have tried to convince our guy that this sort of auto-entertainment should be under his control, rather than him being under its control. Occasionally, for example, I can convince MK to play some giggly tapes to counter a bout of anxiety or difficulty in dealing with something overwhelmingly sad, like watching one of two teams (it doesn't matter which) loose in a sporting competition. But by and large, and in the manner of many autistic things, not being able to control it is part of the package

This is not one of those posts that ends with, "And then I tried x and the problem was solved." No, I'm afraid I have to go out on a whimper. I'm left wondering whether or not MK should want to do anything about it at all, and if he did, whether there is anything that he could do.

Did it!

2007-07-16T20:12:00.000-07:00

One year less about two weeks from moving cities, MK had his first play date in the new city today. He hung out with his friend, with no problems and, at the end of it, accepted an invitation to go to the new Harry Potter tomorrow. That's it, I can die now.

Another Eight

2007-07-15T18:15:00.000-07:00

I got tagged by a blogger I really like, Steve, over at One Dad's Opinion. Thanks Steve. It seems that every single autistic friendly blogger has now been tagged by this meme, but if I find anyone who is still untagged, I will tag them. (If you blog on autism and you are not yet tagged, consider your self, as of this moment, tagged by this post.) It's kind of fun learning so many random things about people who I read all the time.

The rules:
1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.

1. I'm 44 and I've never lived in one place for more than seven years. I've lived in eight different countries and speak four different languages. Perhaps not surprisingly, I earn my living as a translator.

2. I'm an economic conservative and a social liberal, which seems to annoy both sides. Fortunately, I love a good political argument.

3. I am very fond of both chocolate and downhill skiing. Until I was about 20, I did a lot of cross-country skiing, which my parents (quasi-hippie British science profs) insisted was far superior to downhill. When I finally went downhill skiing, I realized that my parents had been systematically lying to me all through my youth. On the other hand, they were always honest with me about chocolate, teaching me that the very best chocolate was always worth the money.

4. I write fiction, but I don't try to get it published. When I was in NYC, I used to do readings. That was fun.

5. I cannot type unless my feet are up on the desk and the keyboard is in my lap, which means I could probably never work in a real office.

6. I drink about ten cups of strong tea and two cups of coffee a day, but I don't drink anything stronger than that.

7. The only TV I watch is The Daily Show with Jon Stewart, but I watch that every night.

8. I essentially never listen to music. Another way of phrasing that would be to say that I always listen to music. The thing is that, while I do like music, I cannot do anything else but listen while music is playing. I can't read, or work, or even do relatively simple things like washing the dishes. So usually, I just don't turn it on. My wife, on the other hand, is very fond of music and can work with it in the background. In particular, she likes They Might Be Giants, so I know the lyrics to almost all of their songs and, while in New York, I went to just about every show that They Might Be Giants put on, which was a lot.

Speaking More of Speaking More

2007-06-28T23:44:00.000-07:00

Sorry for the wait. I would have come up with this second post sooner, but I trusted Blogger to hold on to my draft version and, of course, Blogger ate it. I hope it was tasty, Blogger! (If you don't know what I am talking about, then you might not have read Part One, where I went over MK's checkered linguistic past.)

The Intervention

So, what is different now? First of all, we got a new Speech and Language Pathologist (SLP). The SLPs that MK has seen over the past five years have generally appeared to be at a loss as to what to do with MK. We sought out the ones who were specialized in communications, and not speech production, and we even worked with one who was the well-published head of a university department, but none of them really seemed to have any more idea of how to help MK than we did. They flipped between play therapy and grammar drills with no noticeable effect. We found them useful as sounding boards for our own specific questions about things like how to respond to echolalia, and as book recommenders, but that was about it.

The new SLP is different. Some of her core training comes from Reuven Feuerstein, who she studied under in Israel. Her day job (MK has been seeing her privately on Sundays) is as an SLP in a school for developmentally disabled kids that is entirely based on the Feuerstein approach. Feuerstein's big idea is Structural Cognitive Modifiability, which basically states that you can not only teach thinking, but you can actually permanently change the way the mind processes information as a result. Another set of techniques she uses come from Naci Bell, who came up with Visualizing Verbalizing. This is a teaching technique aimed at ASD kids, in which they are taught to visualize events as scenes, with an emphasis on gestalt, or seeing the main idea in context. As they get better at visualizing in a coherent way, they are encouraged to draw on their visualization when verbalizing.

(I can't help but notice the similarities between these techniques and what I gather is going on with Brain Engineering, which is what MothersVox from Autism's Edges describes in her post, Trying Something New. Sweet M is likewise showing great progress, which warms the cockles of my stony heart, in part because, ever since I started reading Autism's Edges I've felt there were similarities between Sweet M and MK.)

With the new SLP the sessions are only one hour long, once a week, but she packs a lot in.

First they do Feuerstein "instruments," which are all about manipulating purely visual information. MK has just finished working on an instrument that involved five rows of pictures. Based on the pattern of pictures in each row, you he has to deduce, by inference, which picture from a separate pool of pictures belonged to each row. In addition, at the end, he has to say whether any of pictures in the pool did not, in fact, belong to any of the rows. So this involves holding five inferred answers in memory and comparing them to the pool to make a secondary inference. They do this many times, and go faster and faster each time. They do this for about ten of fifteen minutes.

Then they move to listening to short stories and identifying the main idea. They started off with identifying a main idea that was actually stated in the text, but as soon as MK had mastered the inference instrument described above, she switched him to a different set of stories in which he had to identify a main idea that was not actually included in the story but could be deduced by – you guessed it – inference. This is another ten of fifteen minutes for ten short stories.

Next they've been running though the who, what, when, where, why, how questions, with MK listening to statements and deciding which kind of WH question the statements correspond to. That's short, probably less than five minutes.

Then it's time for Visualizing Verbalizing. MK gets a picture that the SLP can't see. MK then has to describe it to the SLP. In the end, the SLP is going to describe the picture back to MK, and then they will look at it together, so MK understands that he has to make the SLP understand the picture fully. It's interesting to see how MK has progressed with this. For example, at first, when the SLP asked MK to tell her about the colors, he used to say, "I see back and yellow and green and red and brown…" Now, when she asks him that question, he says, "The boy's jacket is brown and his mittens are yellow…" What is even more interesting is the way that, after a couple of months of doing the short stories described above, when MK had gotten really good at naming the main idea, the SLP gave him his Visualizing Verbalizing picture card and said – you guessed it again – tell me the main idea.

I'm sure you are getting tired just reading this, but there is more. Now it's idiom time. They do these in sets of 50, building up 10 at a time, using cards. She starts off by getting him to guess the meaning from three possible choices. Usually that's not hard for MK as two of the choices are always close to the literal meaning, so the third answer is obviously right according to – need I say it – inference. For example, "When you tell someone to get off their high horse you want them to: a) get down from a high place; b) stop acting like a snob; c) put their horse in the stable." If you've got your inference working, you can spot the right answered without even knowing the words "snob" or "stable."

Last they usually play a board game like "Semantically Speaking," in which every turn requires answers about more idioms or homophones.

This all sounds kind of grueling written out like this, by MK loves it. He bounces out of that room just glowing with success. That is probably mostly because the SLP makes sure that the level and speed of advancement is adjusted so that MK gets 80 to 90% right answers. What is more, she responds to his answers in such a way that he perceives himself as getting 90 to 99% right answers.

The Changes

I was just talking to MK's pediatrician (who I must say is a real rock -- he sets up appointments every couple of months, just to talk to me, to listen to what is going on, to encourage me to be a pain in the butt at school and offer to write any letters that might be helpful) and I told him that Sasha was making incredible progress with language recently and also we are really impressed by his SLP, but we can't be sure that the two are connected.

That just the way it is with these things. Someone, and I am pretty sure it was someone on Autism Hub (would it ever be nice if all the archives of all of the blogs on Austim Hub were searchable from some magic Google page) wrote this really good piece on evaluating interventions. They said that everyone -- ND, DT, whatever – develops in fits and starts. There are periods where they rush forward, and periods where they appear to go backwards. This is the way the human organism works. And if you happen to start a new intervention at the same time as your kid is surging forward, the intervention will appear to be working. If you start the same intervention when they are slowing down or "regressing," it may appear to be useless or worse. What is more, we can often have two or three different interventions going on at one time, and some things are going to be more effective in combination. So I would be very reluctant to say MK's new SLP is causing MK's linguistic progress, but if she's not at least contributing, I'd be surprised.

So here's what going on. A couple of months back MK started this massive surge in vocabulary. He just started using new words and expressions in every other sentence. The big change was that he was doing it deliberately and enjoying it. He suddenly found that he could retrieve all these words and choose to use them, on the fly, just for fun. Then, all of a sudden, we got humor. MK used to say silly things for a giggle, but they were generally non-sequiturs. These new jokes made sense, had timing and were actually funny. Just as I was getting used to that, he started in with the puns. That's where we are now. Puns right left and center. A year ago, just hearing puns confused him and, if they were explained to him, they actually made him cry (MK does not like cognitive dissonance). Now he is playing with every word that comes along. The other day we were walking past Home Depot and there were all these bags of potting soil sitting out on the road. "Let's steal some," I joked. "No," shot back MK, "they're dirt cheap anyway." – Pun and idiom in one fell swoop!

Where we live, there is a mountain with lights on it that look like a letter M. I joke that it stands for my first name. MK says, "Yeah, it's your signal because you're Superman. No, you should be Super-Mar," those being the first three letters of my name. Then he goes on, "But it would be more fun if you were Super-Mars!" – a slight pause – "You know Mars has another meaning? That's the name of a month in French. It means March." You can just hear the neurons crackling!

And that is not all. MK has never been able to narrate an event that happened in real life. For some reason, he can recount entire novels, giving the chapter numbers as he goes along and reproducing the dialog, but the question, "What did you do in school today?" has always been answered by "I don't know." Now, all of a sudden, it's, "Two periods of Language Arts, one period of math, PE and an assembly. We were doing parameters and areas in math. In Language Arts I had to compare Iceland and Greenland (with prompting, details of the comparison emerge). The assembly was boring because they were playing loud music and I didn't like it." This is completely uncharted territory for us. In fact, I just got through demanding a home-school communication book at MK IEP meeting, because there was no other way for us to know what happens at school. Things have changed.

And then there is sudden capacity to understand and talk about systems in the real world. About a year ago, we saw a bunch of log rafts on the river, and I asked MK where he thought they were going. "I don't know," he answered, "to a factory." Wow! I was impressed. MK didn't usually show that kind of insight. "And what do you think they are going to make the logs into, at the factory?" I asked. "I don't know," MK replied. "Trees?"

It's harder to give short examples of general comprehension, but compare that to the conversation we had recently when I mentioned that it was possible for babies to be born at home. "So what happens," he asked, "Does the doctor come to the house?" And when I told him about midwives, he wanted to know, "What about the machines? Does the midwife bring the machines from the hospital?" There is a whole lot of inferring going on!

Backwards

2007-06-27T22:12:00.000-07:00

This week has been lots of fun at school for MK. They watch movies, they go to the park, the kids get to hang out with each other, the teachers get to spend some relaxed time chatting with their students -- it's a good time for all. And at this time of year teachers decide to see the best in the kids that they are saying goodbye to. They give them praise and encouragement for next year. There are gifts and cards. It's an incredible community-building experience.

I have just one question: why do they do this at the end of the year, rather than at the beginning of the year?

Imagine how it would be if, in September, instead of laying out strict rules about how binders and desks are to be maintained and subjecting the kids to all kinds of tests, they took the class to the park. Imagine if they started the year by talking about what was right with the kids, instead of trying to identify what is wrong. Imagine if the first thing they did in the school year was let the kids have fun with each other and the teachers.

Ah well, it doesn't hurt to dream.

Speaking of Speaking

2007-06-22T23:24:00.001-07:00

I have been meaning to speak a little about MK's speaking for a while now. It's pretty exciting to see new corners turned as, for example, Mom-NOS noted while telling us of Bud's latest linguistic leaps. For Bud it was inference and lateral thinking that came online, for MK, it's all about vocabulary.

MK's linguistic history is the sort of thing that PhD dissertations (or Ripley's Believe It or Not stories) are made of. His mother is Japanese and his father is a Japanese speaking Anglophone. So, when speaking to each other, we speak mostly Japanese. Following the standard advice, when MK was born, I spoke to him in English while his mother spoke to him in Japanese. To make matters a little more interesting, MK was born in Paris, so the TV and everything outside our apartment was, of course, in French. That is why we never connected the fact that MK failed to pick up more than a few words with the way he liked to line up his toys in a row or the way he covered his ears every time the toilet flushed or an appliance whirred (this last thing we innocently called his "Rainman impersonation"). At one point we switched entirely to Japanese for a few months to see if that would make things easier for MK. It didn't. So with MK still limited to single-word jargon at age four, we packed up shop and moved to New York, where --everyone assured us-- the relative linguistic homogeneity would soon snap him out of it.

Needless to say it did not. Various doctors and school personnel told us not to worry, right up to age six, at which point we finally started seeing a speech and language pathologist (SLP). Nobody, not even the SLP, who you would have thought would be on the lookout, asked us whether MK knew how to play make believe (he did not), or whether his idea of a fun afternoon was visiting and closely observing a roster of dozens of No-Parking signs around the neighborhood (it was), or whether he showed any interest in other children (he didn't), or whether he ate foods that were not white (of course not) or was capable to touching things with textures (what do you think).

At that same time, because he was in grade one, he was learning how to read. Soon he could recite entire books and, while he did not appear to know what they meant, it was the key that at least partially unlocked speech for him.

-- Heavens to Betsy what a lot of back story. Sorry about this; I'll try to speed it up. --

By nine, with three years of remarkably ineffective speech therapy, he reached a point at which he could express just about any fairly straightforward idea, given enough time and cooperative interlocutor. But a lot of the purpose of language was still obscure to him. I remember a written assignment on penguins that at age eight or nine went like this:

Penguins are animals.
Penguins are not animals.
Penguins are black.
Penguins are orange.
Penguins are not black.
Penguins are not orange.
Penguins eat food.
Penguins not eat food.
Food eat penguins.
Food not eat penguins.

I have a feeling that was not exactly what the teacher was looking for.

Vocabulary was also tough. Words just wouldn't stick. MK could look at a picture and repeat the word twenty times in a row, and have no recollection of the word he had been repeating just five seconds later. He would also loose (or temporarily fail to retrieve) fairly simple vocabulary. At age ten, "road," would sometimes become "that car-driving place – you know, it's back" and "toaster" might be "toaster," but more often it was "that toast-making thing."

Still, I suppose somewhat remarkably, MK was doing OK in school. He understood things. He adapted. He compensated. At age ten he got Bs on all his statewide standardized tests, including reading and essay writing. I guess it helped that his teacher taught to the tests.

This year he made some advances. But up to a few months ago they were linear. Then something changed and they became exponential.

-- But you know what? This post is too long, so I am going to stop here. In the next post I'll carry on and tell you about his new SLP and the weird and wonderful things that are happening. --

(Oh, I just love it! I feel like Fox News – "Radiation cloud makes going outside certain death for half the nation. Tune in to Fox News at 8:00 and find out which half.")

Uneducated guess

2007-06-17T10:38:00.000-07:00

Reading Kristina's blog this morning, as I do most mornings recently, my armchair theory of autism causation popped up in my mind again.

She quotes Kati Wright as saying:

Despite receiving high quality early intervention, my son lost every word, every skill he ever had within a year of his diagnosis. Christian lived in constant pain for the following two years with a destroyed immune system and endured bouts of severe colitis, pnuemonia, staph, strep and cellulitis, while hardly eating, barely sleeping, only screaming. Tens of thousands of parents are living this nightmare along with me. We are understandably angry at the glacial pace and narrow focus of autism research.

And I am struck by how different that sounds from MK's childhood which was all forward progress. It was different progress from the progress of his peers, but we never got the sense that he was going backwards, and other than the usual string of stomach bugs when he first went to daycare (which he was kind enough to share with his mother and father) he was never sick. I am convinced that MK has developed just as nature intended him to, a wonderful expression of the DNA he was born with.

When I think about this, I also think about childhood disintegrative disorder and about the Autism Twins blog and mitochondrial autism, which is apparently a condition in which insufficient mitochondrial function is at least a contributing factor to autism.

Autism is a name given to a cluster of behaviors and modalities of processing. It is tempting to assume that people who match up with this cluster of behaviors and modalities do so because they share some common neurocircuitry. I would go as far as to say that, if we could actually observe such things, some autistic people would probably be found to share at least some circuitry that would be distinguishable from neurotypical circuitry.

But I very much doubt that all people with an autism diagnosis would be found to have identical wiring, even if they shared very similar behaviors and modalities. That is because, in living things, similar variations can often have different causes. People jump up and down both when they've banged their thumb and when they've won the lottery. People get depressed because their serotonin production is too low, and because their serotonin reuptake is too high. People can be thin because they move around a great deal, or because they eat very little. Same appearances, different causes.

And seeing that the modalities and behaviors that were are talking about are anything but homogeneous in the first place (in fact, there is at least as much variety in the behavior of autistic people as there is in the behavior of NT people) the idea of homogeneous causation seems pretty unlikely.

If, then, there is probably more than one cause for autism, it seems fitting to me that there be more than one set of investigations going on. More importantly, if there is more than one cause for autism, then success in identifying or implicating one cause does not mean that that hypotheses involving other causes are invalidated by that success. It is possible for it to be true that autism is hereditary and part of normal genetic diversity and, at the same time, for it to be true that autism is caused by an immunological disorder during development of the brain. It wouldn't surprise me if there were a dozen or more causes, and probably hundreds or thousands if you count each combination of genetic variation as a separate cause.

That said, the real utility of having a term like "autism" has nothing to do with causation. The utility of the term is that it helps us get an idea of what we should do. We know that autistic people are often more happy and successful with certain types of support. We also know that support has been grossly inadequate (if not actively harmful) in the past. That should lead us to conclude that current support is unlikely to be optimal. So that is something that we could be working on. And that is the kind of research that would benefit just about everyone with autism.

So, in short, I think that people should go ahead and research whatever seems likely in terms of causes. There may even be some cases of autism that have causes that make them amenable to medical intervention. Other cases don't have a "cause" any more than blond hair has a "cause." It would be good to demonstrate that too. It's all good. In the meanwhile, no matter what the etiology, most autistic people can benefit from some support or accommodation. So, as and entirely separate issue from causation, and without splitting into camps depending on which cause seems most likely for the autism closest to our own lives, let be sure that the lion's share of the energy is spent on support and accommodation.

Got Theory of Mind?

2007-06-14T09:19:00.000-07:00

Blogging on theory of mind, Joey's Mom wants to know what this rot is. Good question.

She sets it out nicely:

In a basic simplification, I understood that the "theory of mind" means that one person can understand that another person has a mind. It is being used as a shorthand for the ability to pick up and react to other people's emotions, because you understand that they HAVE emotions, thoughts, feelings, beliefs, etc., and that these emotions, thoughts, etc. might be different from yours.

Then she points out that:

Setting aside that I know a lot of non-autistic people who have a lot of trouble with the second part of that, I haven't yet met an autistic person who didn't have these abilities. They might not be able to react appropriately to other other people, but that seems to be more a problem of processing and accessing proper response.

I agree 100%. Our guy, if anything, is over empathetic. When he was a kid, if he was riding a bicycle and he saw someone else fall off a bicycle, he would keel over immediately. If someone was being shot at on TV, he would shout, "They are shooting at me!" He could not watch baseball because, when either side lost, it would be more than he could handle. At the same time he failed the Sally Anne test and therapists duly worked with him on theory of mind.

Joey's Mon goes on to say:

People who are not autistic seem to come up with the odd ideas when they just can't get the fact that there are people in the world who cannot communicate orally- or even verbally. They seem to have their own problems with "theory of mind" in that they can't understand that there are other ways to communicate.

I agree, and I think it goes beyond communication. I think many people have trouble imagining minds that work differently than their own. Recently, I told MK the story of Icarus, he didn't much care about the moral, but he would not stop asking about how Daedalus dealt with his grief at seeing his son die before his eyes (something I had not mentioned in my condensed version). Of course, no professional would notice this because they are always too busy pointing out inappropriate fixation on details, preservation and lack of inferential thinking (because the things he infers are often different from what "normal people" infer).

If you grew up in a town that had only red roses and had never heard of any other kind, and then drove quickly through another town that had only yellow roses, you would be likely to say that the new town lacked roses. In the same way, psychologists have developed all sorts of tests to determine when and how NT kids start modeling other people's minds. So when a kid comes into their office, they have a quick look for the typical signs of that typical modeling, and if they don't see it, they conclude that it is there. The idea that it might be there, but different, never occurs to them.

The blogger also comments:

Theory of Mind seems to be just another way of trying to depict autistic people as something less than human. Of taking away their sense of humanity by taking away their sense of community. It is easier to make an object of a person you believe is making an object of you.

That certainly would make sense, but I'm not so sure about the motivation. I guess all psychological musing contains an element of objectification. That is, after all, what we are asking of psychologists -- we ask them to give us an objective description, so that we can at least pretend that what we do for our kids is rational.

We need to keep in mind that simple models of anything so incredibly complex as the workings of the human mind are bound to be wrong. The task of the psychologist is a bit like that of the weather forecaster. We know they are going to be wrong much of the time right from the outset, but we still hire them.

I don't think they produce bad models with the goal of objectifying people. I think it is the consumer who asks for objectification, and the bad models represent a best effort to meet that demand.

Nor am I ready to abandon the line of inquiry and intervention that goes with theory of mind. MK needs help in following conventional clues about what is going on in other people's minds and behaving in an interactive way that takes that into account. When he turns his back on classmates or complains about them when they are standing right there, it is clear that, at that point, he is not concerned with the sort of things that will be going on in their minds.

This morning, he started a conversation with, "You know when the bunny goes up in the air, and then it turns over. That's so funny." I'd never seen the video clip in question, and MK had failed to take the contents of my mind into consideration when starting the conversation. MK's going to have less satisfying conversations if he does not get better at this.

From the other side of the coin, MK will tell me the same thing dozens of times. If I call him on it, he admits that he knows that I know. Given that he himself gets very annoyed when people tell him things that he already knows and given that he very much wants to make me happy, it seems odd that he does not make the content of my mind a determining factor when deciding what to tell me.

Bottom line, it is clearly wrong to say autistic people lack theory of mind. But it is also useful to note that the social interactions of autistic people are sometimes different from the social interactions that would be predicted by the theory of mind model in NT people. If one of the goals that an autistic person has is to be able to interact with NT people in a way that is regarded positively by NT people (obviously this does not have to be a goal at all times, but it sure can be useful), then the theory of mind model is going to be a useful benchmark and a useful way of discussing behavior.

Coming up for air

2007-06-02T23:16:00.000-07:00

I while back Mothersvox mentioned how spring was stirring things up for her daughter and how this change of season thing seemed to have an impact on many folks with regulatory issues. I mentioned that the change in seasons might be linked to the incredible strides forward that MK has been taking in the past month or so. But the tug of the seasons affects everyone, and not just the neurologically exceptional. So that could be what is behind my recent change in mood. It could also be the very fact that MK is doing so well, or the fact that his dreaded IEP is over and done with, or the fact the whole school year is almost over, or the fact that next year's teacher is reputed to be good. Whatever, it is, I'm feeling better.

And as I get used to this feeling, as I notice that I can stay sleep right up until the alarm rings, as I find that I can go for hours (or at least several minutes) without thinking about MK and his education, I look around me and I notice that I have a life of my own that is not necessarily entirely defined by MK, or at least, I have the potential for a life of my own, and I have been ignoring it -- letting it slip away unattended. I'm going to try and do something about that. It's going to involve some scheduling and some asking MK's mother to pitch in on some of the business of running our guy around to the various prodding and poking services that we make over 20% of our income to each month.

And while my motivations are entirely selfish, I imagine that my making myself a little more rounded, I will also make myself a better father.

Inclusiveness

2007-05-30T23:05:00.000-07:00

MK thinks differently. Obviously. He classifies things differently. He sees all sides of the question and does not accept that anything should be put into an arbitrary box.

Someone other than his doting father might simply say that it is impossible to get a straight answer out of him.

Me: Was Darth Vader a good guy or a bad guy?
MK: Sometimes he's good and sometimes he's bad.

Me: Which do you prefer, french fries or rice?
MK: Both.
Me: But if you had to choose?
MK: I'll choose both.

And so on.

But it's not just indecisiveness. For several years he approached each new thing that he learned about in the following way.

Me: This is a hard book.
MK: What's not a hard book?
Me: Well, for example, Goodnight Moon. Goodnight Moon is an easy book. (This works.)

Me: This is purple.
MK: What's not purple?
Me: Red, yellow, blue, black, brown and white. Those are all different colors. (This is a bit unorthodox, but it can be done.)

Me: This a refrigerator.
MK: What's not a refrigerator?
Me: (Trying very hard not to sound exasperated.) Everything else in the entire world.
MK: Even me.
Me: Yes, that's right. You are not a refrigerator. Nor am I. We are both not refrigerators. (This really is not the way I'm used to looking at the world.)

He doesn't ask the "What's not a..." questions anymore, but I thought the conversation we had tonight about gravity was good proof that his penchant for inclusive thinking is still strong.

Me: ... so without gravity, you and I wouldn't even be on the ground. We'd be floating around.
MK: Birds float around, even if there's gravity.
Me: Yes, but a bird is doing work to beat gravity, He's flapping his wings.
MK: Or her wings.
Me: Yes. Or her wings.
MK: Or his and her wings. If it's a boy and a girl bird. Like a fem-male. Does that exist, a male and a female at the same time, born that way?
Me: Yes, that's a hermaphrodite. (It's really a shame that he dropped his previous line of questioning. "What's not a hermaphrodite?" would have been quite easy to answer.)

IQ

2007-05-25T09:24:00.000-07:00

A while back I posted about the strange results of the IQ test that MK got as part of the many batteries of tests that he was put through in order to get his autism diagnosis. It came back showing him on the MR borderline. As I mentioned here, with some arguing and explaining on my part (which included links to this blog) the psychologist agreed that it did not fit with the way he got Bs on standardized tests in grade four. We were pretty sure that MK had simply not been there during the test. He is capable of playing Sonic-X videos in his head, while simultaneously creating the illusion that he is engaged in a conversation.

We had to wait two months for a retest, which was not fun. The reason it was not fun is that his teachers, whose combined knowledge of learning differences could be written out on a grain of rice using a magic marker, had decided that the problem with MK was that he was not smart enough to handle the things they teach in school, and that all of his odd behavior could be explained as a stress reaction to the unreasonable demands placed on his wee little brain. The fact that he got As and Bs in his last school (where, unlike his current school, the teachers had Masters degrees and were required to rack up continuing education credits) was seen by his new teachers as proof of their hypothesis. To earn those kinds of grades, he would have had to have been beaten every day, which goes even further to explaining his odd behavior. So you can imagine how good for our morale it was to be trying to set these teachers straight, while we knew that, down at the psychiatrist's office, there were a set of test results that, if used as is, would have proved his teachers right.

At long last, however, the retest date rolled around. By that point we had discussed what an IQ test was and why it was important to pay attention during one (the last time we had told him it was just for fun). The psychologist also suggested that I stay in the room so that I could call for a break if I noticed that MK was in fact watching videos (it's possible to tell, but you have to know what to look for).

Long story short, MK did fine this time around. He is back to having an IQ squarely in the normal range. In order to get a measure that was not going to be contaminated by the practice effect, the psychologist did a non-verbal battery that he hadn't done on the previous occasion, but he also repeated some of the standard WISC subtests so he could see if MK was actually performing differently. Apparently his score jumped 20 points across the board. He only got bored and started playing videos in his head once (that I was able to notice). I suggested a break when I saw it was happening. After the break, the psychologist repeated the last few questions, which he had answered incorrectly. Naturally he answered them correctly when he wasn't watching internal videos, which gave us a very specific and clear example of what had gone wrong the last time round.

We were very lucky to have a psychologist who was interested in testing MK in a way that would reflect what he could do, rather than what he happened to do. I have a feeling that it was something of a learning experience for the psychologist, too. I shudder to think, however, about what happens when these tests go wrong without anyone noticing. We had previous testing and various other numerical measures to back our contention that this psychologist's first attempt had got it wrong. If we had not had that, I doubt we would have gotten the retest. And that, of course, would have meant that MK would have been pulled out of the academic curriculum. You can be sure that this very thing has happened before to other kids and that many of those kids have been stuck with their inaccurate scores.

And while I am on the subject of IQ tests, let me just wax eloquent and say that they really suck. A big component is just checking to see which words the kid knows. In the year 2007 you would have thought that learned people would have come to understand that the words a person does or does not know are determined by which words are used around the person. Even some of the non-verbal tests were actually tests of knowledge. If you don't know what a stage coach is and how the drivers of these vehicles dressed, you are not going to be able to pick those two items as corresponding pair to an astronaut and a spaceship. I would have expected almost all the tests to be centered on processing, but almost none were. Our guy came off more or less OK. I imagine that his IQ test will continue to improve with time (at the end of the retesting, it was up as compared to the tests done two years ago). But other kids, who are just as intelligent or more so, will get low scores for reasons that have nothing to do with intelligence. It does not seem that we have learned much over the past 50 years.

Given the cultural biases of the ordinary classroom, I guess that these tests will give a fairly accurate predictive measure of how well a kid will fare if dropped into such a classroom, but I think it would also be useful to have a measure of how well a kid is likely to do in a theoretical culturally neutral learning environment. Which is to say, how well the child will do if taught in a manner adapted to his or her preexisting knowledge of the world. The reason I care so much about cultural biasing is that autistic people are, almost by definition, culturally deviant. For example, even if they are exposed to the same story as their NT peers, they are likely to focus on different aspects. They listen for different things in conversations. They focus on different places in pictures. And so on and so forth. The end result is that their cultural experience is different from the cultural experience of their NT peers. In many cases this difference in cultural experience will be even greater than that of, for example, someone who grew up in China vs. someone who grew up in Brazil. I know that there do exist supposedly culturally neutral IQ tests. In my opinion, those should be the only tests on persons suspected of being on the spectrum.

Who's the boss?

2007-05-24T11:10:00.000-07:00

Our guy, who speaks well enough to be understood by everyone, but poorly enough that everyone notices how oddly he speaks, is very interested in a non-verbal 13 year old who is in some of his pull-out classes this year. He was talking to me about the tough time that the 13 year old must have, what with not being able to speak, when he commented that kids who are younger than this boy (which includes my son) act like they are the boss of him, just because they can speak and he can't. Then he mused about how unfair that was, and how if must make the 13 year old feel like a baby. Then he resolved to let the older kid "be the boss" from now on.

I didn't have any input in this conversation because it really did seem to be a tricky situation to me, so I never got beyond, "Uh huh" and "Really?" It's going to be interesting to see how the practicalities of letting the older boy take the lead play out, but I guess it only really comes down to adjusting one's timing and remembering to look at the older boy's communication device. If grown-ups can do it kids can too. The older boy has been invited over for video games so, with luck, I should get to see this in action.

Houston, we have humor

2007-05-18T20:20:00.000-07:00

Yup, that's right. And not just the rote repetition of 'jokes' either. We're talking about saying things that dance the borderline between what makes sense and what is absurd. What is more -- and what is everything when it comes to humor -- we have timing.

OK, I'm not talking about masterful plays on words or cleverly barbed comments at the expense of Alberto Gonzalez. In fact there are probably a dozen wittier eleven-year-olds on your average suburban block, but the fact remains that we have humor.

I'll give you an example. He was making Kraft Dinner tonight and had misplaced the box. So he asked aloud, "Where did the box go?" Then he answered himself, "Maybe it went to look for its mother." Alright, wipe the coffee off your monitor and try to get a grip on yourself. Or not, as the case may be. The point is the concept. It's a massive leap forward.

I started noticing it only about a week ago. Actually, I first started noticing that he was getting my jokes. For example:

MK: When can we go to Playland?
Me: I don't know, 2012, 2014, something like that.
MK: Slowly spreading grin, followed by a laugh.

A few weeks earlier this would have been, "You're joking right? We couldn't wait until 2012 because I would be too old by then."

Don't get me wrong. I was very pleased with that response. We considered that a triumph. It had replaced what we would have got two years ago, to wit, "No!!! Now I never get to go!"

And of course, two years before that, we were only just getting the hang of sentences, so the whole conversation would have been impossible.

What is particularly odd is the pace at which this is coming on. The past couple of days he's been getting off a good one two or three times a day. This follows on an explosion of vocabulary. The vocabulary thing started a few weeks earlier still. It went from a new word or phrase every day to it's peak about a week ago, at which point I would swear he was using something new in every sentence. -- Yes, don't worry, I did give kudos to his new SLP. (More on her later.)

You know, Steve D over at One Dad's Opinion had a great post on balance that really got me thinking about how having lots of stuff to deal with in my life is a plus, not a minus. I can forget that at times. What I am getting at is that, since MK turned about 2, I cannot ever remember being bored. How many people out there go nine straight years without complaining of boredom once? Steve D reminded me to see richness for what it is and to appreciate it.

It may seem that I have wandered off topic, but I'm actually getting to something. The thing is that I was thinking about segueing from this progress report to a bitter lament about the stupid things some of the school staff said at this week's IEP. It's absurd that MK be doing so well and, at the same time, be evaluated as doing poorly by people who have only known him for a few months and are thus incapable to noticing that he is developing at the speed of light, right beneath their upward-turned noses. But thanks to Steve D's reminder, I'm not going to do that. Instead, I'm going to revel in the absurdity. I'm going to say, "Look at me! I'm so lucky. I've got two opposite things going on at the same time, and me and my wife are the only ones who can see 'em both!"

I will write about the IEP itself shortly. It went pretty well actually. But this post is long enough.

What's right?

2007-04-05T09:44:00.000-07:00

Things have been conspiring to get me to write about what's right. First of all there was Joel over at NTs are Weird asking what we liked about our auties, then Along The Spectrum wrote a wonderful post ending with:

In the eleven years that have passed since I first asked the question “Will my son be OK?”, I’ve recognized that it wasn’t even the right question to ask. Instead the questions to ask are “Are my kids OK today?” and “Am I doing things to make tomorrow the same or better?”

Very nicely said.

So, I ask myself what I like about my guy, and whether he is he doing OK today, and the first answer that comes back is that one of the things I love about my guy is that he is doing great today. He is a guy who is naturally beset by anxiety and self-doubt but -- odd as this may sound -- he does not let that get him down and he does not let that get in his way.

I know that school is a strain for him, as he is constantly up against uncomfortable social situations (shunning, teasing, patronizing teachers, lessons that he doesn't understand, disappointing marks without explanations, pestering by another special needs kid who he is often paired with and who cannot understand that the guy needs his space) and yet he comes home every day with a smile and a hug and is ready to fall to the floor in giggles when tickled. When I ask him how his day was he always replies either "good" or "great." That is partially because that is the shortest possible response to the question and the least likely to generate follow-up questions, but only partially.

When I push for details, I'll hear about a yummy lunch, or a good mark on a spelling or math test. I'll hear a few complaints too (usually about the other kid with special needs, some change in his schedule or an injustice -- often as not concerning some third party). But the complaints don't change his assessment of the day, which remains great. And it is great. Nothing disastrous happened, things are more-or-less interesting, and he's home and happy and ready to play video games. What could be better?

Here is another example. A few weeks back I bought some badminton rackets because, being a complete klutz at all ball-sports, I remembered that badminton is not so bad, seeing as the shuttlecock falls relatively slowly. My guy was totally against me buying the equipment because they had been "teaching" them badminton at school and he had been unable to hit the shuttlecock, even when he was serving. Despite this, he was willing to give it an honest go when I insisted that there was an easy way to play. As soon as I had watched what he was doing, adjusted his stance and grip and explained a few basics, he got it. By "got it" I mean that he was able to serve most of the time, only missing his own dropped shuttlecock about 20% of the time. And right away he loved it. Soon he was able to return a serve about half the time. What joy!

Now I am required to play every day. As I am no better at it than my son, we consider a four-hit rally a major success. The great thing is that our guy focuses on those shots that work, where the racket connects with the soft popping sound. He doesn't linger over the more numerous ones where there is nothing but the hiss of the racket passing through the air next to its intended target. That's not to say that he doesn't get mad, scowl, shake his racket, pick up the shuttlecock and stare at it with his most intimidating stare, and shout "my arms are not working!" He does all that, and then, one minute later, delights in a well placed hit. And on the balance, a game that contains 70% misses and 30% hits will only include about 20% grimaces and attempts to stare down the offending shuttlecock. What is more, in the overall our guy will give the whole game a rating of "really fun."

Yesterday was after-school reading help day. It's an 8 km bike ride up and down hills each way. There are plenty of kids, NT or otherwise, who would have quite a bit to say about riding 16 clicks to fill in work sheets. What my guy said, on the way back was, "That was a really fun day, today!" And because we weren't back until seven, there was no time for after-school backyard badminton. Did he complain and give up? No. At 9:30 he pointed out that there were streetlights in the back ally. So, before bed, we were out there smacking at the birdie. It's hard to play badminton in the dark, even with street lights, and we never even got a four hit rally. But on each of the three times that I asked permission to hang up the rackets for the night, I was rebuffed. The game didn't end until nearly ten, when we lost the shuttlecock over a neighbor's fence.

So, as just a few items in the very long list of things that I love about my best buddy, I will mention tenacity, good spirits, hard work, positive outlook, and plain old being a fun guy to hang out with. Those same elements of his character tell me not only that he is doing great today, but also that, if he can stay just as he is, he'll do great tomorrow, too.

Not even actionable

2007-04-04T14:47:00.000-07:00

One of the things I am finding hard is that the Canadian system is so different from the US system. My first thought when I started having trouble with the school was to get an education lawyer. Unfortunately, they do not exist and, in this province, neither do professional or volunteer advocates.

I spoke with the head of instruction at the school board, who had lived in the States for a long while and she explained that the big difference is that there is no solid legal underpinning to school obligations in Canada. There is nothing like the the Americans with Disabilities Act to tie it too. Also, an IEP is not a legally binding contract here. It is just a plan, but there are no consequences for not following it. To make things more difficult, the Principal has very little instructional authority over the teachers. This is a union issue. So nobody in the school is in a position to ensure that an IEP is implemented, which makes an IEP much less of a high-stakes deal.

There have been class action suits against school boards, but individual-level litigation is apparently unheard of, at least in this province. I'm Canadian, but I have to say I am much more comfortable with the US system. I would much rather have an advocate or an attorney with me at our upcoming IEP meeting. We didn't need one in NY, because the school did things really well, but it was nice to know we had the option. And it was nice to know that the school knew that we knew that we had the option. (How's that for a theory of mind exercise. )

But even if we had a lawyer, I don't know how much it would help. The real problem with the school is not so much that they are withholding services as that they are doling out services in an almost random manner that seems to be doing at least as much harm as good. They keep dragging him out of class for behavior classes where kids with self-control issues learn not to swear and not to hit people. Our guy would never, ever swear or so much as raise his voice. One of his main problems is that he is extremely shy, self conscious, lacking an confidence and over-compliant. But for the school, a social behavior problem is a social behavior problem, and kids with social behavior problems get bundled off to learn not to swear.

Likewise, they pull him out of class for what they think of as remedial reading help. In this class they work from a text book published in 1973 (I am not kidding) and write out lists of words in alphabetical order in the hopes of boosting vocabulary. The guy has been getting individual speech therapy for years, where therapists work very hard to get him to take a flexible and communication oriented approach to language. The last thing he needs is someone telling him to memorize lists of words. But here again, if kids have trouble with reading (and, by the way, the standardized tests show that he doesn't particularly, he just has troubles *talking* about what he has read) then they get pulled out of class to memorize words.

Meanwhile, what they won't do is help him keep up with what is being taught in class because they see that as too much of a strain on the poor little guy. The poor little guy, by the way, got 3s on all his independently graded statewide tests last year. But for his teachers, kids who talk funny are stupid, and parents who say otherwise are unrealistic.

On the up-side, we've got a number of outside school things going on now. He's got a very good SLP, he's just started a real social group for ASD kids, where they learn things like how to start conversations and joke telling, and he's going to an after-school tutoring place, which he likes.

On top of that, today I spoke to a guy who does the computer systems for a local bookshop and the person who works there is a former school board trustee, whose (now 18-year-old) son had/has special needs, and who is a key member in a local association of parents with special needs. She wasn't there when the fellow took me round to meet her, but I'll go in again in a few days time. One thing that we are considering is changing schools, and this person/association sounds like a good place to start getting info on where is good and where is not.

So, there we are: not where we want to be, but perhaps moving in the right general direction.

IQ Update

2007-03-19T21:09:00.000-07:00

I am relived to announce that the psychologist we have been seeing since moving to this city is a normal, sensible human-being (as distinct from a teacher, for example). We had a talk today about our guy's unaccountably low score on his latest IQ test (down a full standard deviation from his previous one) and he suggested that we retest.

It's not that I am hung up on IQ, but we want to have numbers for the school that reflect what he can do. Schools tend to extract work out of kids that meets what they perceive to be their potential. If the school found out that our guy was producing work that exceeded his potential as measured by an IQ test, they would be sure to offer him less difficult things to do, so as to match that potential.

The other thing is that, if his conventionally measured IQ really were as low as the last measurement (borderline MR) then we would have to find out what processing facility he relies on for the competences he has. I'm talking about things like finding and installing DDR (Dance Dance Revolution) editing software and using it to make custom DDR tracks for his favorite songs, or finding the locations of all the DDR machines within a 20 mile radius so that he go visit the ones with the best songs. If I managed to that, I'd be feeling fairly proud of myself. If an 11-year-old is doing it without any help from grownups, there must be some cognitive capacity that he is using to do it. If it turns out that is is not the sort of cognitive capacity that can be measured by an IQ test then, we better find out what it is based on so that we can strengthen whatever it is.

SLP Update

2007-03-18T23:31:00.000-07:00

I often wonder how it is that our guy looses words. He talks about the "toast making machine" for "toaster" and even "the car driving place" for "road." Today his band-new SLP pointed to a picture and asked what it was.
"A cloth" he said.
"And do you see one of those in my office?"
"Yes. There."
"And what is it called."
"A window cloth. ... A curtain."
It makes me wonder. It's a word we use at home all the time, as it's his job to open and close the curtains. The SLP's first question was astute, because it showed her whether he knew the concept of curtain. By identifying another object it the same class, he showed that he did. His second answer, "window cloth" also shows that he knows what defines it. His third answer of "curtain" shows that the word was in fact stored in memory. But for some reason it was unaccessible for production as speech (it have no idea whether or not it would have been accessible if the conversation had been happening in text).

We ended up not choosing the SLP who was into Michelle Garcia Winner, but that was not because of my opinion of MGW's attitude. The thing that made us want to work with the second SLP that we interviewed was her use of the techniques of Naci Bell and Reuven Feuerstein, neither of whom I had heard of before. They both start from the idea that processing can be made more flexible and successful by a combination of cognitive training and learned meta-cognitive habits. It's an interesting idea. I have no idea whether it will work for our guy, but the literature shows that it does sometimes appear to work, which is about the highest acclaim that can be given to any form of therapy for communicative speech to date. It certainly can't be much less effective than all the speech therapy he has had in the past.

The new SLP's idea is to teach him to use his visual processing for language processing tasks. If I understand her correctly, her tests showed that our guy has more visual processing capacity than auditory processing capacity (no big surprise there), so she will attempt to rewire his brain to use some of that left-over visual processing capacity to supplement auditory processing tasks. It's ambitious, but there is plenty of evidence that the brain is quite happy to remap resources -- consider the gains in one sense when another sense is lost. It will be months before we have any inkling as to whether it is useful, but the guy enjoyed today's session and it feels good to be doing something .

Talladega Nights

2007-03-17T15:58:00.000-07:00

Last night we decided to get a movie, and the guy decided on Talladega Nights. The movie is OK if you like your comedy embarrassingly stupid and crude, but it did not go over well with our guy. The first problem was the kids in the movie swearing. Our guy knows that kids are not allowed to swear and it upsets him greatly to see it. He had a similar reaction watching bits of The Squid and The Whale. It brought him to tears to see it, but when we suggested turning it off and reading a book instead, he insisted we keep going. Next there were people shouting and being mean to each other for no particular reason -- another near melt down, another offer to stop, and another insistence that we keep going. Then came the scene where Will Ferrell believes he is on fire but, as our guy loudly pointed out, "He is not on fire!" Shortly after this I has the audacity to laugh at something, and that was the straw that broke the camel's back. A major crying jag ensured and the grownups insisted that the movie was over, because there no point watching something that makes you miserable. Our guy, had different ideas. "I need ten minutes to clam down," he told us. "Don't turn it off and don't watch it, just leave it paused. I'm coming back." And with that he went to his room.

We imagined that the "ten minutes" business was really just a graceful exit line, but at the appointed time he was back, fully composed -- smiling even -- and ready to watch the rest. Plot-wise, things get better and more closely approach social norms in second half of the movie, so there were not many more complaints from the peanut gallery and his final judgment was "pretty good."

My wife and I speculated about what was going on. This is the type of reaction that is usually reserved for injustice (either on the screen or in books). It occurred to us that he was upset by the fact that the film was absurd and things did not follow in an orderly manner. This morning, however, when I talked it over with him and tried to explain what "absurd" means, I found myself using as an example the YouTube Poop videos which he loves to both watch and create. These videos take absurdity to the extreme, but he loves it. So I guess it's just social rules, and not rules of narrative logic, that he cannot stand to see broken.

All in all, it was one of those wish-we-hadn't-but-glad-we-did events. On one had, it was stressful for everyone, but on the other hand, he recognized his level of disregulation for what it was and managed to turn it around with style. That was the first time he has ever told us that he needs time to clam down -- it's usually the other way around. My guess is that it was an opportunity to take a step forward.

Today's Progress

2007-03-15T22:17:00.000-07:00

In a way, the way things have worked out with the school is kind of liberating. We now know to expect nothing useful from them, so we don't have concern ourselves with trying to bring about a useful outcome. I slept better than I had in a while last night and I woke up feeling motivated to get things done. We enrolled our guy in a two day video game design class, got all the information about a tutoring program (Sylvan) that he might like, rented a car so that we can take him around to these various places, got info on kids activities at the local community center and actually took our guy to a "Boys Night Out" at this same community center. Now that I see it written down, that really is a lot for one day.

The Boys Night Out worked really well. There are usually about 8 boys from nine to twelve years old there, but for some reason there was only one other kid. This one other kid was of the type who likes to stand still and list a lot of information about video games. They had a nice quiet time and exchanged phone numbers at the end. Our guy was pretty reluctant about the phone number thing, because the idea that he might have to have someone over was pretty intimidating, and he did make some complaints to me. Fortunately, his play mate didn't seem to notice his worries. I'm not going to push the play date thing, but one can always hope. Unfortunately, it will be another month until the next Boys Night Out.

This kid also turned out to go to a funky alternative school. I looked it up on the web and it does seem interesting. We hadn't been aware that there were alternative schools in this city. That's kind of refreshing too. I don't know that our guy would do best in an alternative school -- in fact, I could see the lack of structure being extremely difficult -- but just to be reminded that the closed minded folks around the corner are not the only version of education is somehow relaxing.

Disappointing Day

2007-03-14T23:33:00.000-07:00

It's a disappointingly day for us. The vice-principle called to tell us what would be decided at our son's upcoming IEP meeting, and it does not include any of the goals that we think are important. At least she was forthright and did not lead us to believe that we would be consulted in a meaningful way.

After six months of back and forth, the school is more convinced than ever that our guy only got As and Bs at his previous school because of unreasonable pressure and bullying parenting (this is their explanation for his behavior, which includes quite a bit of crying and unusual facial expressions) and that it is in his best interest not to teach him grade level academics. It is straight-up discrimination based on neurological differences and we should probably be suing their posteriors, but I can't see that a law suit would make them change their minds. They would just be crappier to our guy.

We will try to minimize the damage by getting him some outside tutoring along with after school clubs and activities to try and offset the massive confidence drain that the school creates. We had hoped to bring about goals like learning and confidence building within the school, because it is actually taxing on the guy to have to do another whole round of learning outside the school. But ultimately, self doubt is more draining than any amount of work.

I wish I had my son's time machine so that I could set dial to the day on which we made the decision to move, and then play my former self today's conversation with the VP. If anyone who is reading this is thinking of moving with a child who has special needs, be sure your research is more through than ours. Don't be convinced by platitudes and protestations of modern thinking. Talk to local parents. See what they have to say. I have since done that and found that our case is not unusual. I wish I had done it earlier.

Processing in Parts

2007-03-13T12:06:00.000-07:00

If you haven't read Zilari's blog (partprocessing.blogspot.com) you are missing out. Unfortunately, her blog has been paused, so all you can read is the archives, but the archives are great. Zilari explains what is going on with her in way that is easy to grasp and empathize with. In particular, her February entry gave me a new window into why we say the things we do.

I remember being asked what I'd done in school as a child, and literally not having any of the words to describe what happened, even if I could picture what had happened. When an answer was demanded, I would resort to "stock phrases" and memorized scripts, some of which I knew were not accurate.

...

I remember actually telling people, echolalically, "I am acting this way because I am bored, because I am too smart for this classroom material", or, "I cannot control my behavior because I was molested". My saying these things did not mean I actually thought them, or that they were true -- rather, they were simply the only words I had at the time. Not responding was not an option...when asked, "Why do you act this way?", the most truthful answer -- "I don't know" -- was never acceptable.

I began to see conversations of that sort as a kind of puzzle or a trap from which I had to escape; the communicative aspects of those conversations were lost on me completely. I knew that someone was putting words in front of me, and that until I gave back the right words in response, I would not be allowed to leave or exit the conversation.

You don't have to be on the spectrum to experience conversation in this way to some extent. According to tests, I'm as far off the spectrum as they get, and yet it's not uncommon for me to say things simply because I imagine that is what is expected of me, or because I cannot think of anything else to say. And this is not by any means a fully conscious process. We don't make decisions about everything we say. A good part of it just comes out. It is not even uncommon for people to "discover" that they believe a certain thing or feel a certain way only when the given sentiment pops inexplicably out of their mouth. Likewise people get caught up in the most complex lies simply in order to protect a minor untruth that appeared unplanned in the middle of a conversation.

It makes sense, then, that this problem could be far more common and more difficult to deal with if you have trouble with auditory processing and generating speech on demand. Our guy does this sort of thing all the time. He will say something that is completely untrue or even unrelated to the idea that he is trying to communicate. Sometimes it's obvious. The other day an SLP asked him if our cat slept with him and he replied 'yes' (untrue) and then further agreed that the cat was nice a warm and soft in bed (our guy has never so much as touched the cat, because he has no interest in it at all). But it would have been much harder to explain that than to agree with the SLP. Sometimes it is more complex and he will actually say something that he doesn't intend and then be frustrated when people act on what he said, rather than what he intended. At which point he will generally shout, "I just said it by accident! Everyone makes mistakes, you know!" And he's quite right.

I've always realized that, while frustrating for everyone involved, these slips of the tongue are not done on purpose and so are not, for me, a big deal. But in reading the rest of Zilari's blog entry, I can see how these might cause all kinds of grief in an ordinary social setting such as a school, where the interlocutor has no other information to go on and takes everything that is said at face value. And the annoying thing is that I cannot think of any strategy to avoid or lessen the problems that this could bring in school. If anyone has a strategy, I'd love to hear it.

Hitler and Time Machines vs. Mice and Cheese

2007-03-12T16:02:00.000-07:00

The other day we went skiing and, in the car on the way back, after six and a half hours of green and blue runs, the guy was in a mood to talk. It's remarkable how moving his body seems to help with talking. My wife also points out that cars are a great place for conversation, as the passenger and the driver sit side-by-side with no eye contact, which takes the stress off.

The subject of the day was time machines, as it has been for about a week. I don't know why time travel popped into his consciousness, but it has been great, because the whole issue of the past and history has been been very murky for the guy up to now, but with the idea of being able to visit, everything is starting to make sense to him. On this day my guy wanted to go back to 1937, to see his grandfather being born. I suggested that 1937 would be a scary year to visit Europe, and this lead to going through the entire history of WWII. He "got" the everything with all the questions and outrage you would expect of anyone hearing the story for the first time.

I was really impressed because an hour of abstract discussion of history is not usually the sort of thing to hold his attention. So I decided to press my luck and make the conversation even more abstract. I told him, "I want you to consider a question that has no right answer. There are two ways to answer it, but people have been debating it for years, so no reply is completely right or wrong, it's just interesting to discuss." He was up for it, so I asked him "If you could use your time machine to go back to the 1930s and you found Hitler in a restaurant, would you kill him?"

The guy didn't even miss a beat. He said, "No. Killing is not a good idea." And then, before I had chance to complement him on his principled response, he went on to say, "But you could talk to him. You could tell him that all the people would died from the bombs, and make him not do it." I was amazed. I said there was no right answer, but he had come up with one. And then he added, "But he might not listen to you, because he was too busy taking over the world. So you should use the time machine to go to when he was a kid. Because kids are nice and if you tell him when he was a kid, he might listen to you. You could tell him, 'Listen, there are lots of other jobs out there besides taking over the world.'"

The conversation went on from there to the problems of getting recognition for changing history (no one in the present would know of the problem that had been adverted) and whether it was worth trying to change people's ways when so many do not listen (the guy thought it was).

You might, by this point, be wondering why this tale of a father's ordinary pride in son grappling and with and successfully navigating abstract questions is worthy of a blog post. To put this in context, a few days earlier the school SLP had announced that they guy was incapable of grasping the concept of "why." She had presented him with a picture of a mouse and some cheese, and a second picture of a fat mouse and no cheese. Apparently he had been unable to explain what had happened. She had interpreted this as meaning that cause and effect was beyond him. And the thing is, maybe it was in that context. Or maybe he just didn't care enough about mice and cheese to give any thought to the question. I don't know. All I know is that the guy who can devise improved, ethical methods for changing history is seen by his SLP as incapable of the most rudimentary abstract thought, and will continue to be treated as such in school.

-- As an addendum, at dinner tonight our guy complained about the SLP who had raised his ire by taking him out of class where they were correcting their spelling (apparently a fun activity) and made him do boring testing. When we asked whether he had told her the testing was boring he said, "No, I just stand still and try to pretend she doesn't exist." That could explain some of the results that she's getting.

Michelle Garcia Winner

2007-03-10T23:42:00.000-08:00

We visited an SLP on Friday who seemed bright and dedicated and had a good rapport with our guy. She told us that she was keen on the works of Michelle Garcia Winner, so I checked her out on the Web. There were some aspects of her work that I liked. I liked the fact that she took a direct instruction approach. I liked the fact that she uses graphics in teaching. But I did not like the impression I got that MGW perceives herself, and all other NT people, to be inherently superior to the people she is tasked with helping.

In describing an interaction with a bright young man, she recounts:

In an effort to help one of my clinician’s understand Joe’s limited perspective-taking abilities and how they impacted his social interactions I asked her to observe me interact with Joe. I then asked Joe to tell me everything he knew about chemistry. This delighted Joe and he enthusiastically began to tell me all about the topic. As he did so I initially responded with active listening, then slowly I got up out of my chair, walked out a door and stood on the other side of the door only to have Joe continue to look at my chair and talk about chemistry.

I cannot help but feel that this demonstrates a lack of respect for Joe. Would she be as quick to make an NT child look foolish in front of a colleague? Perhaps she would, but experience make me think it unlikely. There is no mention of how Joe felt, if and when he realized that a trick had been played on him, but it's hard to imagine that the experience would have been a big self-esteem booster.

MGW's articles give examples of people who perform well in a number of areas but, due to a "deficit" in the area MGW considers to be most important, come to nasty ends. There is, however, a conspicuous lack of stories about people with processing differences who overcome the hurdles that these present. MGW's world seems pretty bleak.

Truth be told, I'm not wild about therapists who use the term "deficit." As a kid, I was labeled dyslexic. As a result, I went through a lot of testing and had a lot of people give me the "poor thing" treatment. I guess I didn't suffer excessively at the hands of people who shook their heads in sad wonder over the boy who read slowly and couldn't spell, but it wasn't exactly and uplifting experience, either. Somehow, I muddled through and, when I got to university, where I was studying English Literature, I made the most curious discovery. It turns out I had far better recall of what I had read than almost anyone else in my seminars. I certainly didn't have anything like a photographic memory, but I could quote pretty well verbatim from anywhere in any book that I had read and, if I flicked though the book, I could always find the passage I had in mind in a matter of seconds. The other students, who presumably were not "dyslexic," couldn't do this nearly as well. (That made it easy to win debates, even though it probably also meant I was spending a few more hours than my peers reading each novel.) Later I learned to read and write in three more languages, including Japanese. In addition to translating between these languages, I now write and lecture on translation theory and, in particular, how we can be sure of what we are reading and writing. This is one reason why I think therapists would be better off using words like "difference," "difficulty" and "challenge" over "deficit." It's not just that the term may turn out to be inaccurate and limiting. My concern is that, if you tell a person, or their caregivers, that they have a deficit, they are much less likely to find out that their difference can be a strength.

Another problem with MGW is her focus on eye contact. I would have to see how it plays out, but it seems to me that trying to make better communicators out of spectrumy people while insisting on eye contact is akin to trying to make a better swimmer out of someone with an anvil tied around their neck. My guy communicates much better if he is not sitting face to face with his interlocutor. I am, however, willing to be open mined on this. MGW may not have adopted this goal simply as a matter of aesthetics, nor on the assumption that all aspects of NT conversational style are worthy of imitation simply on the grounds of their usage -- the way some old ladies select marmalade only because the label states that it is eaten by the Queen.

In the overall, I am inclined to override my gut reaction and see how her approach actually works. That might seem odd, but my reason ties back once again to my own experiences as a dyslexic. You see, with all that tut-tutting and hand-wringing, and all the classes I took in which I bounced on trampolines and drew pictures of things reflected in mirrors, nobody actually tried teaching me to spell. There was no discussion of rules, no memory drilling, no goals set and no useful measure of progress. As a result, as you have probably already noticed by way of a homophone in this blog that the spell checker did not catch, I am not much better in terms of that skill that I was at school. If I could turn the clock back and direct my own education, I would recommend less trampolines and more i-before-e-except-after-c; so perhaps a little try-to-think-about-what-they-are-thinking would be good for my progeny.

Is it even possible?

2007-03-08T20:26:00.000-08:00

I just got the results from our guy's statewide tests for last year and he got 3s (Bs) in English, Science and Math. Meanwhile, his last psych-ed evaluation showed him to be performing at grade level (grade 5) in all academic areas, but at the same time to be slightly mentally retarded.

I've been doing some web research on metal retardation and autism, and there does not seem to be a single example of a child being autistic, having a significant language delay, performing at above average levels in academic tasks and having an IQ lower of 70. The psychologist who did the evaluation, and who had seen our guy's last report card which was all As and Bs, seemed to think that the number the evaluation gave could be right and said that perhaps he had just been going to a particularly good school. For those numbers to work out, it would have to be one damned fine school.

Perhaps I am missing something. I know that our guy is sometimes slow on the uptake and has some odd ideas about how the world works. But on the other hand, at 11 years old he can edit sophisticated videos with multiple tracks, for which he has a following on YouTube. He participates in web forums and is has even been made a moderator on one. He can cook full meals, do his own laundry, run errands and lots of other things that not all 11 year olds can do.

It just doesn't fit with mental retardation, in fact, it doesn't come close to fitting.

Accept or fight

2007-03-07T10:44:00.000-08:00

Reading what other bloggers have to say, I notice a theme (here and here, for example) to the effect that the extremely negative view of autistic lives found on in some places, such as Cure Autism Now, is out of place.

By way of full disclosure, I'm in the neuro-diversity camp. The way I see it, no matter how our brains are wired, it's pretty odd to find our selves on this planet processing information and interacting with the environment. We are all, at the fundamental level, in the same boat. And to say that one way of processing and interacting is better than another would be like saying that it is better to be born a cat than a dog. So, that's my bias.

I also believe, however, that happiness is better than suffering, and that, for all conscious beings, happiness and suffering are a function of how we interact with our environment. From a biological perspective, that is why they exist -- in order to flexibly shape our interaction with the environment.

If we are unhappy, we can change the environment or we can change ourselves. I think that people who have an accepting view of autism have this view because we see ways in which we can change the environment (support, accommodations, technology, awareness) enough to make our children happy. We also see potential for changing our children (education, development) so that they can be happy even in unmodified, or minimally modified, environments. My guess is that parents who are less accepting of autism, may feel that way because they do not see any way to change the environment or change their children enough for them to be happy. If autism was making it impossible for my son to be happy, you can bet I would be much less accepting of it.

Of course, as soon as I start down this path, I run the risk of being seen as reducing it all to distinctions between high-functioning vs. low-functioning. But that is not my intention. What I am actually talking about is happy vs. unhappy. A person can be very "high-functioning" and still unhappy. The opposite is also true.

I'm not sure what the incidence of unhappiness in the autistic population is compared with the general population. What is more, if it is higher than that of the general population -- and I suspect it is -- I'm not sure how successful we can be in reducing it to normal levels. It is the answers to these questions that I think should determine the extent to which we view autism in the overall, and not just the autism that affects us personally, in a negative or accepting light.

Just hold on a minute

2007-03-06T09:30:00.000-08:00

A series of things have occurred that stress me to the point where I am thinking about nothing else but the young guy, his school and his support people. This is new. I've generally be comfortable with my the young guy, his school and -- when present -- his support people. What makes this more odd is that the young guy has, in my opinion, been doing remarkably well, and making all sorts of developmental leaps and bounds.

What has changed is where we live. Last summer we moved from a very big city to a medium sized one. In the very big city, the young guy was seen as having a social learning disability, needing minimal support. He was most recently diagnosed with a moderate speech delay and mandated small group social skills and speech therapy, for about two to three hours of pull-out time per week. In the medium sized city they suggested that we pursue an autism diagnosis, which we got. But at the same time, the psychologist pegged the young guy's IQ at borderline retarded, while the big city psychologist had clocked it at normal. What is more, the medium sized city SLP upgraded the young guy's language delay to severe. In the big city, the young guy did well in school. He got As and Bs. Last year, he got Bs in both the both Math and English statewide standardized tests that they subject the kids to in grade four. Here, they refuse to even give him grades for anything but math. Which is another way of saying they are giving him straight Fs in everything but math. What is more, they young guy had plenty of friends in the big city, including friends in class, friends from his block and friends of the family. In the medium sized city, he has shown reluctance to even attempt to meet or hang out with any of his peers.

So in a few months, the young guy has gone from being, in everyone's estimation, a kid with a few challenges, who is doing very well, to a kid who is seen by everyone, except for me and his mother, as having a host of severe problems and limitations.

I am aware that much of this might have to do with the transition itself. All kids find moves hard. Spectrumy kids are bound to find it harder. And it's not like the young guy is responding by being angry or defiant. He just cries, or grimaces, or hides his face, or says "I'm sorry, I'm sorry, I'm sorry!" (Behavior that, up to now, has been seen as part of the young guy's personality, but which is now viewed as a major problem by his teachers.) But knowing that it could be worse is a bit like telling yourself that it's not so bad to have the flu, because at least you don't have cancer. It's not an inherently comforting line of reasoning.

In fact, the really upsetting thing for me is the cognitive dissonance between how well I see the guy doing and how he is being evaluated by those around him. I guess I feel that, if they don't like how he's doing now, they will never like how he does in the future.

Another half of my concern is that the guy we are seeing and the guy other people are seeing may not be the same guy. It is possible that, at home, where things are pretty much the same as they were in the big city, we see a guy who is pretty much the same as he was in the big city. While at school and in psychologists' offices, they see a guy who finds himself in an alien environment and is trying to regulate the situation in any way he can, which may include not actually engaging or giving real consideration to questions that are being asked.

In the past, the guy has been very good at regulating situations. Teacher's and interveners often told us that he wrapped them around his finger. He's a really nice sweet guy, so it's easy for him to do that. I don't hear that anymore. All I hear are lists of things that he cannot do or does not understand. I'm told that he giggles and acts silly when asked skill-testing questions. I wonder if that is a way of regulating the situation.

Whatever the reasons, I don't like what it happening. I don't like it one bit.