Be the machine

I’ve been trying to understand for several months why Buddy Boy wants to be a machine or an inanimate object. I think if I can “Grok” this it might help me to see things thru his eyes a bit better.

Although Buddy Boy has rarely voiced a desire to be a particular type of person (he used to always say he wanted to be a farmer when he grew up) for the past year or so he’s always wanted to be some sort of machine (or occasionally an inanimate object). When I say that I would like to have a Ferrari someday (hey, I can dream, can’t I?) Buddy Boy will say that he wants to be a fast car when he grows up. He doesn’t want to fly a plane, he wants to be a plane.

I don’t necessarily think that this is a bad thing. Buddy Boy has always had a fascination with anything mechanical. Sometimes he’s obsessed about them (he could stare for hours at conveyor belts), but mostly I think he’s intrigued by them. As long as he doesn’t totally shut out everything else, we think this is great. We took a long drive in the country a couple of autumns ago, in search of combines in the field. We found some working near enough to the road to get some pictures, and had one of the pictures made into a puzzle that he still gets out and uses today.

Sometimes I think that Buddy Boy's wanting to be a machine is just a bit of magical thinking on his part. But mostly I wonder if Buddy Boy is so into the things he likes that he totally identifies with the machine or object. In so doing, the only way to really understand the machine is to be the machine.

Sometime this identification with things is a bit maladaptive. Buddy Boy has a hard time allowing us to wash his clothes in a washing machine. He hides his dirty clothes in his favorite hiding places to protect them from the washing machine. His offered compromise is that he says we can wash them only if we hand wash them. While I think it’s great that he offers to negotiate (negotiation as a preferred method of getting something, as opposed to screaming, grabbing, and hitting are all things we have been working on), it’s just not realistic to expect Liz to wash all of his clothes by hand. So we revert to a bit of diversion and subterfuge, putting the clothes aside and promising not to wash them then. Later, when he’s not watching, we throw them in the washer. When asked by him later if we washed them in the washer, we tell him yes, and he seems OK with that.

But other than instances like this, I don’t see any real harm with him wanting to be a machine (or an object). If being so focused on something that you want to be that thing can help you understand it, then maybe the heightened understanding gained from this experience will help in designing better machines. Only time will tell. Until then, anyone with a spare Ferrari in their garage, feel free to send it my way.

Joe is 209

And Justice for All

Tomorrow (Tuesday, 27th of February, 2007) the Winkelman case is scheduled for oral arguments before the Supreme Court of the United States.

I know this may be boring to those outside of the US, but this is something that is important to all parents of special needs kids in this country. Basically, the question at hand is whether parents can be allowed to represent their children before a Federal court when cases under the Individuals with Disabilities Education Act (IDEA) are tried.

Generally speaking, only a lawyer can practice law, and one must be hired to represent you before the court. And, in an ideal world, we all would like an attorney to represent us and our child's interest when appearing in court.

There are only two problems with that. First of all is the shortage of lawyers trained in special education law. The second big hurdle, of course, is money. It costs a lot to hire attorneys, and by the time a case makes its way to a Federal court most families are going to be tapped out when it comes to raising funds.

To backtrack a little, I'll give you a short synopsis of the case, which illustrates how the system works. The Winkelmans have two children on the autism spectrum. One, according to them, was adequately educated by the local school district. The other one exhibited many "behaviors" in pre-school, and the parents felt that the school was not providing an appropriate education, and had an inadequate plan to provide a free appropriate public education (FAPE) which is the law.

The Winkelmans enrolled their son in a private school that specialized in autism, while petitioning the school district for reimbursement of the funds they were paying in tuition (greater than $50K/ year on a yearly income of less than $40K/ year). They were initially denied placement in this school, and appealed the case to a Federal court. The court has postponed deciding this aspect of the case. Rather, the court ruled that the parents could not represent their child before the court, and that they must retain an attorney. This is the only aspect of the case that is up before the Supreme Court tomorrow. Two more in-depth discussions of this case can be found here and here.

So why is this so important? Most things are decided at a local district level and never get to court, so what's the big deal?

The deck is already stacked against parents in advocating for their children's rights for a FAPE under IDEA in the LRE (Least Restrictive Environment). Anyone that has gone to an IEP (Individual Education Plan) meeting for their child knows of what I speak. Typically at our IEP's the ratio varies from 15:2 to 20:4, in terms of how many people the school district has lined up on their side vs. how many we have on ours (one or two parents, advocate, lawyer). School districts often like to make the rules up as they go along, and try to get parents to sign off on whatever it is that they (the district) want to do. If you as a parent are not fully aware of your rights and the law, it is easy to get bulldozed in the process.

If indeed you call the district out for acting badly, then they have a team of lawyers at their disposal, and public funds to pay them with. You, of course, have to pay for your own lawyer. If you and the district can't agree on a plan for your child, then you are entitled to file what's called "due process". The latest iteration of the IDEA rules spell out that if the parent's suit is judged to be frivolous or without merit, then the parents are responsible to also pay for the opposing side's legal fees.

Two recent Supreme Court decisions also tend to tilt the playing field against parents. The first is the Schaffer case, where the court decided that the burden of proof rests with the plaintiff (the family) when pressing a case against the school district. The other decision is the Arlington Central case, where the court decided that even if the parents won, they could not recover their lawyers' fees from the school district (generally speaking-but not always in civil suits, the loser is liable for lawyer's fees for both sides).

Before the court tomorrow, the school district is expected to argue that parents need to hire lawyers because a) parents are not smart enough to properly represent their children's rights, and b) if parents are allowed to represent their kids, then a flock of ill conceived and frivolous suits will clog the court system.

I hope that the Supreme Court exercises some common sense here. Most parents that would go this route are very sophisticated when it comes to knowledge and interpretation of special education law. They are also smart enough to get a lawyer if they can, but representing their child themselves may be their only choice if they cannot afford a lawyer and their is no lawyer willing to take the case for free. Also, pursuing a case in court is expensive, in terms of time and money, even without the cost of your lawyer figured in. I know that parents of special needs kids aren't going to be running out and filing frivolous lawsuits.

If the Supreme Court rules against the parents, then the deck will be stacked even higher against parents. Only the most well healed parents will be able to afford the cost of a lawsuit against the school districts. The districts, realizing this, will be able to be even more arbitrary in their decisions on what are appropriate services. And our children will suffer.

Joe is 208

Dumb?

There was a surgeon who used to work at a hospital I worked at. Had a bad accident (broadsided by a drunk when he was driving home). He had some orthopedic injuries, but his hands were fine. He almost totally lost the ability to talk, however. And when he could speak again, his speech was nearly unintelligible, even with speech therapy.

It took him far longer to return to work then it should have.

His colleagues suggested he should take disability. They seemed embarrassed to have him around. They pretty much shunned him. They didn't think patients would understand him. The hospital didn't want him back. Everyone assumed that since his speech was affected, his whole brain was damaged. Pity they could give, but not understanding.

He had to fight hard to get his job back. And that included a long time being supervised by fellow surgeons having to "prove" that he really could operate.

And I wonder, just what is it about speech, anyway?

Out of our faculties, it seems the one that is most tied to other's perception of intelligence and personhood. I mean, why is the lack of speaking ability sometimes referred to as being dumb (as in "He's deaf and dumb.")? In the 1968 movie "The Planet of the Apes" (which my quite sophisticated wife loves for some unexplained reason) Charlton Heston lands on a planet much like Earth, where the Apes and Chimpanzees talk and are intelligent, and the humans are mute and are looked down upon by the ruling apes.

If you look at people that are blind vs. people that are deaf (and also usually mute), the blind people are often much more readily integrated into "normal" society. The deaf/mute are shunted off to the fringes of society. People who don't speak are often assumed to be "dumb", not acknowledged, not taught, and not valued at all by society.

And though my son speaks (totally understandable, though his speech patterns and idioms are sometimes a bit "off") many with autism struggle with this, and some never do to an appreciable degree. This has led to many quite intelligent people in the past being labeled as retarded, and shunted off to institutions to be wharehoused. It also leads to continuing misunderstandings when autistics with limited speech venture off into society. Amanda Baggs relates on her blog many of the sometimes sad, and othertimes horrific, things which have happened to her over the years as a somewhat non-verbal autistic.

Nowadays there are assistive communication devices that are available to help non-verbal people be understood. Dr. Sanjay Gupta recently wrote of his impressions of autism after meeting Ms. Baggs, who used a voice synthesizer. And though this has helped, I can't but think that we have a long, ingrained societal understanding that those without speech are "dumb", and that it will take more than a little technology to overcome this.

Joe is 209 :(

On Raising Cowboys

...And them that don't know him won't like him
And them that do sometimes won't know how to take him
He ain't wrong he's just different
but his pride won't let him do things to make you think he's right...
------------------------------
from "Mama Don't Let Your Babies Grow Up to be Cowboys"
by Willie Nelson

So Yesterday I had occasion to drive 300 miles one way to another city for a function, then after 4 hours, drive back another 300 miles.

I was alone, and able to indulge some of my eclectic musical tastes. I ended up listening to some Cowboy Junkies, the Diner Junkies, and Willie Nelson (an ex-junkie).

Maybe I'm just picking up one of Krisina Chew's habits and seeing autism everywhere. But as I'm listening to Willie singing the above song I heard those lyrics, repeated the track again to make sure I heard them right, and the thought occurred to me, "I'm not raising a son with autism, I'm raising a cowboy".

And I thought (I do a lot of free association and just plain weird thinking while driving long distances alone) "I wonder if the world would understand my son better, and treat him better, if I just told them he was a cowboy?"

Cowboys have a long tradition in America, and despite a few people using the term "cowboy" in a negative sense when referring to President Bush, there is a long and deep tradition of positive attributes being attributed to cowboys. Mention being autistic, however, and there only seem to be negative stereotypes that come to most people's minds.

Cowboys are entrenched in the lore of the United States, with many of them acheiving legendary status.

Most cowboys were men, but some (like Annie Oakley) were female. Cowboys were (and are) generally people who don't talk much, and are rugged individualists. They tend to keep to themselves, and don't much care if others understand them or not.

Cowboys have a code of ethics that is looked up to so much that some have suggested a version of it be used to instill ethical business practices in individuals.

I could see it now. When the school calls to complain about Buddy Boy exhibiting some behavior that doesn't seem to fit the mold they want to put him in, I could just say something like "You don't understand, he's a cowboy." This would be all that I would have to say to convey to them that my son was different, and in a good way.

Rather than expecting him to conform to arbitrary rules they had set up, they would instantly understand (because of the shared cultural knowledge) that my son was indeed different, and was probably destined for greatness. As they had a genuine cowboy amongst their midst, they would fall all over themselvs making efforts to individualize their educational efforts, much as all of society caters to celebrities. They would also expect great things from him, and as many studies have shown, when teachers expect great things from students they tend to get them.

My apologies to any Europeans reading this. You'll have to get your own legendary figures to latch on to to get the schools (and society) to treat you and your kids better.

The evil within

Like many, I have been saddened and sickened to read of case after case of abuse of disabled individuals. Most recently, Kristina Chew wrote once again about the aversive "therapy" used at the Judge Rotenberg Center (JRC) in Massachusetts.

I linked from that site and also read what Kevin Leitch wrote on his site here.

Dr. Israel, who heads the JRC, studied at Boston's Harvard University around 1960, with B.F. Skinner, the behavioral psychologist. His "treatments" at the JRC are loosely based on Skinner's operant conditioning theories. The list of aversives used at the JRC include such things as electric shock therapy, hitting, pinching, and withdrawal of food privileges).

I wrote recently about how eugenics has been with us since the 19th century. One would think that after WWII the world, at least all those that considered themselves "civilized" would refrain from torturing other human beings. Besides the Nazi medical experiments there were also Japanese experiments that did not receive as much press. When I was growing up I was taught that what happened in Nazi Germany was an aberration, and could never happen in the modern world.

Well, it wasn't long after WWII that a few psychologists proved that theory wrong.

Stanley Milgram, a Yale University psychologist, conducted a now famous experiment in 1961 where he got ordinary people to administer electric shock "punishments" as part of an experiment on "punishment and learning" (no shocks were actually administered, but the participants did not know this). Fully 65% of the participants continued increasing the level of shock to a level they were led to believe might kill the subject, just because they were told to.

In 1971, Stanford University psychology professor Philip Zimbardo conducted another famous experiment, the Stanford University Prison Experiment, where he got ordinary college students to psychologically and physically torture and intimidate fellow students while they were in "guard" and "prisoner" roles, respectively. The experiment had to be cancelled early (after 6 days rather than lasting the planned 14 days) because the participants were increasingly spinning out of control.

Some common themes emerge when we read about these experiments. One is that the "subjects" or "inmates" are routinely depersonalized in some manner. This appears to be essential in order to make the actions acceptable. Another is that many people will just "do as they're told", even if it's something that they normally wouldn't do on their own. Still a third factor is that many people will just "go along with the group" and not rock the boat. So if everyone else is participating in torture, well, we will too.

So it's not too surprising when Amanda Baggs wrote about what she had witnessed (or had done to her) in various institutions.

Nothing that bad has happened to Buddy Boy (yet). But a year and a half ago (when he was still 5) the school he was in "helped" him when he was not compliant by building a little jail cell out of heavy wooden chairs in a separate room, placing him in the middle, and ignoring him until he would do what they wanted. We withdrew him out of that school, and upon reentering school this year he was placed in a class for emotionally disturbed kids (most of them older than him). The standard treatment at this school (which we refused in writing to let them do to him) for non-compliance was to put the kids in either a padded room or a wooden box until they "settled down".

We're out of that place, too, and thus far things have been better over the last two months. But I can easily see that many, many people are thrown into situations that are much worse than what Buddy Boy had. And that bullying, tormenting, and torture are not just accepted, but encouraged in many schools and institutions, because people are told that it will "help" the poor, non-compliant, weird individuals who are worse than animals.

Human beings are capable of unspeakable things. And each of us must remain vigilant to those acts and attitudes that allow these things to continue.

Joe is 208 :(

Puzzling Play

So I come home to find Buddy Boy and Sweet Pea playing a game quietly by themselves.

Yes, that's right. They were playing together (which isn't that unusual nowadays), but they were playing a game, which I've never seen them do unmoderated and without a big reward involved. And to top it off, they were playing quietly. They're never quiet together. It's always running, yelling, jumping off furniture, stuff like that. Sometimes crawling around making animal sounds. But never sitting on the floor, in one of their rooms, unsupervised, playing a game.

They were playing a memory matching game. One of those games where you lay out a few dozen cards face down on the floor/table. When it's their turn, each player turns over two cards. If the two cards match (their is only one match to each card) the match goes into their pile, and they get to choose two more cards. If the two cards don't match they get turned face down again. The one with the most cards in the pile at the end wins.

Well Buddy Boy (just turned 7) was getting his clock cleaned fairly well by his younger sister, Sweet Pea (5 next month). He was making some matches, but Sweet Pea was consistently ahead of him. I guess in some ways I would have predicted that. In addition to being PDD-NOS, Buddy Boy has ADHD symptoms. So I wouldn't expect him to be able to concentrate well on remembering where particular cards were. Though he did seem to be trying, and was somewhat frustrated by the fact that his sister had more matches. On the other hand, Buddy Boy is great at remembering routes in the car, which Sweet Pea is clueless about. She doesn't recognize she's near the house until she's two blocks away. Buddy Boy, on the other hand, knows where to turn to get to important places, and when we was 18 months old recognized the specific nondescript strip mall where a favorite Chinese restaurant was located. He would start to make noise and gesticulate whenever we went past it.

So I don't think that his memory was faulty, and I'm not sure that it was all a matter of concentration, as he did seem to be attending to the task at hand well enough.

One other difference I noticed in how they played this game was in their game strategy. Sweet Pea had quickly incorporated a successful strategy of when something that she thought she knew where the match was came up in Buddy Boy's pick, when it was her turn she first turned over the card that she thought matched the one she had just seen, and if she picked correctly, then turned over the (known) card that Buddy Boy had just revealed in his turn.

Buddy Boy, on the other hand, had a much less successful strategy. When he thought he knew where the two cards were, he first turned over the (known) card that had just been revealed in Sweet Pea's turn, and then turned over the card that he thought would match it. I tried to explain to him how to use the more successful strategy that Sweet Pea was using, but he just didn't seem to comprehend what I was getting at (perhaps my description was as clear as this written one :o ).

The whole episode just seemed amazing to me on many different levels. First, to see Buddy Boy voluntarily playing a game quietly with his sister was an amazing sight. It was HUGE!

Seconly, watching Buddy Boy and his sister playing like this was fun, because I could almost see how they were thinking.

Finally, it was interesting to see how something that Buddy Boy is very good at (remembering things) didn't serve him very well in a game that is mainly about, well, remembering things.

Each task in life is usually much more complex than we appreciate. What appears a simple task often is made up of a multitude of thought processes and actions. And even if part of the process is functioning well, the other parts are necessary in order to have optimum functioning of the system.

I'd love to see more research into how autistic people learn, and if there are common ways that autistics learn. Then maybe I could teach Buddy Boy his own successful strategies for keeping up with the Sweet Pea's of the world.

Joe is 207

What goes around, comes around

If you were to bring up the subject of eugenics in conversation, I would suspect that many people would have to stop and think a bit about what you were referring to. Of those that actually were conversant with the concept, I suspect that most would associate it with the quest for racial purity taken up by Nazi Germany. Few, however, would think of the United States.

Yesterday morning I was in a local bookstore and was browsing thru the book “Choosing Naia”. I am drawn to reading stories of people’s journeys, and this book is a good one that chronicles an interracial couple’s raising of a daughter with Down’s Syndrome. The couple recount how they had taken a screening test for genetic abnormalities (including Down’s) which had come up negative. They go on to say that even if it was positive, they were going to use the information to prepare themselves to deal with it, and not to abort the child. This is backed up by the fact that when the mother again became pregnant, they decided against any prenatal testing, deciding that they already knew they could deal with whatever happened. At one point they had a slightly uncomfortable conversation with the mother’s parents centering on abortion and its use in preventing the birth of children deemed to be defective.

When I came home from the bookstore I read a piece on Autism Vox talking about genetic testing, and how some tests have intimated that they might be able to screen for autistic like behaviors.

While in college I was dimly aware of the eugenics movement in the US, but always thought it was mainly something that happened somewhere else (i.e., Nazi Germany). I’ve been reading a lot lately about prenatal testing being used to encourage parents to abort kids with Down’s Syndrome, as well as many people wondering if this is the future that will be pursued when/if definitive testing for autism surfaces. George Will has written about this subject here and here. I’ve also started looking into the history of the eugenics movement in the US, as I believe that it may have some bearing on how people still act today.

Eugenics is a social philosophy which advocates the improvement of human hereditary traits through various forms of intervention. The term eugenics was coined in England by Sir Francis Galton, a cousin of Darwin, in the late 19th century. Early proponents focused on selective breeding as a means towards this end. In the 20th century proponents included such prominent people as Winston Churchill, George Bernard Shaw, and Alexander Graham Bell.

Another more ominous form of eugenics included forced sterilization laws. The first law successfully passed in the US was in the state of Indiana in 1907, which was followed by laws in California and Washington. Eventually 27 states passed laws that were aimed at forced sterilization of the mentally retarded, the blind, deaf, criminals, and epileptics. Different states had different variations of the laws, and as many as 65,000 individuals were sterilized against there will under these laws. Although after WWII this practice faded greatly, there were still a number done into the 1960’s, and even sporadic cases as late as 1981. During the 1970’s Native Americans underwent forced sterilization, which was encouraged by government policies.

Abortion was legalized across the US in 1973. Prenatal testing enables testing for things like Down’s Syndrome and Spina Bifida. With the onset of non-invasive prenatal testing, some estimate that as many as 80-90% of fetuses with these two conditions are aborted, and many feel that the “right” to abort a disabled child has become one’s “duty”.

The OB-GYN societies of both the US and Canada are both recommending prenatal testing for Down’s syndrome for all pregnant women, not just women over 35.

So basically there has been an uninterrupted period of time from the 19th century until now where eugenics has been practiced in some form (selective breeding, forced sterilization, abortion) in the US. It’s not a new concept, but something that has been with us for a long time. And it is so entrenched in our subconscious that most people don’t really blink when they encounter societal attitudes that encourage “weeding out” so called “defectives” among us.

Joe is 208