Monday, May 23, 2005

Theory of mind of my own

One of the most fascinating concepts I've encountered on this journey with autism is the idea of the "theory of mind." In short: people with autism struggle with being able to look at things from another person's perspective. One of the classic tests of theory of mind goes something like this:

Sally and Anne have a marble, a basket, and a box. Sally puts the marble in the basket, then leaves the room. While she is gone, Anne moves the marble and puts it in the box. Sally comes back into the room. Where does Sally look for the marble?

Most typically developing three-year-olds will know that Sally will look in the basket, because she thinks that's where the marble is even though we know that Anne moved it. Most childrens with Down Syndrome will look in the basket as well. But children with autism will look in the box: "for goodness sake, we just saw Anne put the marble in the box, people!" It will not occur to the child with autism that Sally doesn't know what we know, that Sally's thoughts are different from our thoughts.

I tried this experiment with Bud. We acted it out with Ernie and Bert dolls. Ernie - that prankster - moved the marble while Bert was away, and I made a big deal about Ernie thinking it was very funny to play a joke on Bert. Bert came back and I asked Bud where Bert thought the marble was. With a big grin, Bud went straight for the box and produced the marble.

I also made the connection recently that the answers Bud often gives to "why" questions may have to do with theory of mind. Bud has always struggled with why questions, and it's something we've been working on. We've also been working on empathy. So, often, when we see someone exhibiting an emotion - in a book, in a store, on tv - I'll ask Bud to name the emotion, and he usually does it pretty well. We were in a bookstore and a littel girl fell down and was crying. I asked Bud, "How does she feel?"

He said, "She's sad."

"Yes, she feels sad. Why is she sad?"

"She's tears."

Aaahhhh. He hears "why is she sad" not as "what makes her feel sad?" but as "why was sad the right word for you to choose?" (answer: because I see tears, and tears mean she's sad.) His answer was from his own perspective; no theory of mind.

But it's not that simple. There are other times, in other situations, where it is clear that Bud knows I'm thinking something different from what he's thinking. This often happens when I'm angry - or, more frequently, when he does something that he thinks might make me angry. I usually know that this has occurred when he comes up to me and says "Mama, you not angry face, you happy face!" And since I'm not sure what has happened and clearly have no face at all yet, it's clear that Bud is projecting for me how he thinks I might feel, and how he wishes I would feel. That's theory of mind, right?

A few weeks ago we had some cognitive testing done with a psychologist who works a lot with autism spectrum disorders. It was very difficult to get an accurate assessment of his abilities for a variety of reasons, but let me give you one example:

The task the doctor presented looked like this. There were four pictures: a head, a foot, a hand, and a nose. The doctor handed Bud a card with a sock on it. Bud was instructed to put the card on the picture that went with it. The activity was designed so that each successive set was more challenging than the last.

Bud was delighted. This was just like the Zoboomafoo computer game he loves to play, and he decided he would play it exactly the same way - except, since these pictures wouldn't talk, he would have to do the talking for them.

He picked up the picture of the sock, plopped it down on the head and announced "No, that's not right. Try again!"

He picked it up again, plopped it onto the hand and said "No, that's not right. Try again!"

He picked it up again, plopped it onto the nose and said "No, that's not right. Try again!"

Then, finally, he plopped it onto the foot and squealed "Mangatsika! You're great at this!"

For Bud, getting the right answer in a computer game - or, clearly, in an intelligence test - is irrelevant. It is as much fun to see what happens when you get the wrong answer as it is when you get the right answer. And if you choose the right answer first, you only get to play once on this screen; if you choose the wrong answers first, you get to play four times.

But you can imagine how tedious it was to the psychologist doing the testing. The four "warm up" questions took about 15 minutes, and unless we were prepared to spend the rest of Bud's childhood in the testing room we were going to have to move things along. I gently suggested to Bud that he try to get the right answer first on the next question. He did, and then promptly lost interest in the game and disengaged from it completely.

The psychologist characterized this (in so many words) as a theory of mind issue: Bud didn't understand that the psychologist had an agenda, and that he had expectations for what Bud should do. He said that most children want to please the tester, and are excited about showing that they can get the right answers.

Maybe. Maybe not. It might be a "theory of mind" issue. Or it might be a "mind of my own" issue. It might be that Bud had discovered a fun, exciting game and the psychologist turned it into a boring, dull game. Regardless of what expectations the psychologist had, for Bud dull and boring is a waste of time.

I've been watching Bud since that testing to see if I can find other examples of Bud utilizing a theory of mind perspective.

Last night, 30 minutes after bedtime I could still hear singing coming from his room, followed by a very distinctive thump-thump-thump that told me the singing was accompanied by a little soft shoe routine. I started up the stairs, and just as I came into view I saw his little body hurl through the air in his room as he dove head-first into his pillow. By the time I walked through the door he was tucked in his bed, snugly under the covers, and he looked up at me and did a classic Vinnie Barbarino "What?"

Theory of Mind meets Mind of My Own meets Mind Your Own Business, Mom.

Thursday, May 19, 2005

England's piano man

I keep reading reports about England's mysterious Piano Man, found dripping wet and wandering aimlessly without identification. As I read the theories (trauma, amnesia, mental illness) I am startled by what I'm not reading.

To review:
He will not speak.
He has trouble making eye contact.
He plays the piano for hours at a time, repeating the same music over and over.
When he plays the piano he is totally focused and shuts the rest of the world out.
He draws intricate sketches.
All of the tags have been cut out of his clothing.
He gets anxious when people get too close to him.

Does this sound familiar to anyone else? Has it occurred to anyone that this man is very likely autistic?

Sunday, May 15, 2005

The jury stays out

Day five and I have to admit that overall I'm not seeing much of a difference. He has been slightly better about staying dry, with fewer accidents overall. But honestly, we've seen weeks like this before. He is as distracted, restless, and echolalic as always. (And, to be fair, as charming, funny, and talented as always as well.)

His doctor told me to give it a week, then give her a report. So, two more days and then we revisit the plan.

Saturday, May 14, 2005

Ritalin: day three

Nothing. Normal day at school, normal day at home. A couple of major potty accidents. No extraordinary behavior, good or bad.

The plot thickens.

Thursday, May 12, 2005

Ritalin: day two

An unusual day, with unusual results. Bud's class took a field trip to a dairy farm. Field trips are often stressful, because they break with routine and Bud looooooves his routine. And while he loves the idea of animals, he's not as fond of them up-close-and-personal. See my recent dog post for more on that. This farm had lots of (loud) cows, (loud) geese, and (loud) dogs. Bud was reluctant at times and put his hands over his ears, but he did everything the other kids did. Well, almost everything... he drew the line at holding a goose egg. He went into the barn. He walked right up to the fence. And the moment everyone told me about: he went into a small enclosed space (atypical) that was crowded with children and adults (atypical), went right up to a big metal milk tank (atypical), watched while the stranger in charge turned on the motor to get the agitator going (atypical), then got lifted up to peer over the side at the milk in the tank getting mixed (atypical.) His teacher got a picture. She said it was the only picture she took on the trip.

His day at home was fairly normal. He had a couple of minor pee accidents, but caught them before they got major.

Wednesday, May 11, 2005

Ritalin: day one

Interesting results on our first day of the Ritalin trial! I gave it to Bud about a half hour before school, but didn't tell the teacher or special ed team that I did, so I would get completely unbiased feedback. Since it is only supposed to last 3-4 hours, I expected that any effects would happen in the 3 hours he was at school.

From the staff report, however, it sounds like Bud had a fairly ordinary morning at school. They said he seemed a little "spacey" on the playground at the start of the day, but once they went inside he settled in.

BUT after school - after the medication had "worn off" - he spent the day with his grandmother, and was a total chatterbox! He accompanied her to a doctor's appointment and sat nicely while they did an ultrasound on her leg (long story), commenting all the while. Then he told the technician that he had a sore arm, so she offered to use the machine on him. He hopped up onto the exam table, let her put goo on his arm and give him an "ultrasound." This is very, very atypical behavior! (See my dentist post for comparison.)

Bud has recently been having MAJOR regression with potty training, and has been having 5-6 accidents a day for the past week or two. Today he was completely dry all day.

He's also been going through a belligerent phase, particularly with his grandmother; everything has been a battle. Today he was as easy going as could be.

By the time I got home (6:00 p.m.) he was still going strong. He told me all about his day and talked talked talked about everything he could think of. I started having visions of sitting up at 3:00 a.m. listening to him and trying to get him to go to sleep. But bedtime tonight was like it is every night; it took a while and a lot of him talking to himself as he wound down, but he fell asleep at the regular time.

Obviously, one day is too soon to tell, but I'm cautiously optimistic.

Tuesday, May 10, 2005

Taking the pharmaceutical plunge

Last week I brought Bud for cognitive testing, and the process was a real eye-opener for me. I learned some things about his cognitive challenges - there are concepts like "except for" and "all of the" that he just doesn't get. (When the tester laid out five toys and said "Hand me everything but the car," Bud cheerfully picked up the car and handed it over.) More than that, though, I got real insight into Bud's attention deficit and genuine inability to focus. As soon as he was faced with a task or question to which he did not have an instant answer, he disengaged. It was impossible to gauge his comprehension or problem-solving ability because he couldn't focus long enough on the matter at hand to even attempt to solve the problem.

It seems to me that there are multiple issues here (or, as the doctor said "Just because your ankle is sprained, doesn't mean you don't have a headache,") and if we want to give Bud a real chance to work on his cognitive challenges, then we need to help him focus long enough to have a fair shot. So, following several years of debating the issue, we've decided to do a trial run with Ritalin.

In some ways, I feel like I'm walking around wearing a scarlet R because there appears to be a real social stigma associated with medicating young children. (Do a google search of "Ritalin" if you don't believe me; my favorite hit was titled "Ritalin is Child Abuse.") At the same time, my husband's ADHD was not diagnosed until he was in his 40's - after a lifetime of anxiety, depression, low self-esteem, and alcoholism - and medication has made an enormous difference for him. If we can make Bud's road easier than his Dad's was, we have to try.

I'm picking up the prescription this afternoon, and we'll start him on it tomorrow. Here's hoping.

Monday, May 02, 2005

Jerry's Blog

Jerry Brown's got a blog.

Love him or hate him, Jerry is one politician who lays it all on the line and is more concerned with doing the right thing than with winning the popular vote. He is not concerned with with the 10-second sound bite; he cares about real people with real struggles, a real planet that is battling real environmental crisis, and real policies that can really make a difference. Few politicians would dare to publish a blog that was anything more than re-hashed stump speeches and position papers. Jerry is one of the few.