29 Marbles

In his book Unstrange Minds: Remapping the World of Autism, author Roy Richard Grinker mentions chess legend Bobby Fischer (p. 63) as someone who may have been an undiagnosed autistic. I’ve just started reading David Edmonds’ book Bobby Fischer Goes to War: How A Lone American Star Defeated the Soviet Chess Machine (P.S.), and have to say that I was thinking the same thing. (For more discussion on the subject check out the Bobby Fischer talk page on Wikipedia.)

Which got me thinking: If Fischer were indeed autistic, how would his life - and the history of chess, among other things - have been different if he had been diagnosed when he was young? If he had been provided the treatment and services that are typically demanded today for Asperger’s diagnoses, would he have had the impact he did? Would he have been able to have that impact, or would that ability have been “treated” out of him?

You can extend this to any of the great minds that people sometimes say were probably autistic, like Newton, Einstein, Van Gogh. You could also look at those who have been diagnosed with Asperger’s as an adult and think back on how things may have been different, for them and their contributions, if they had been diagnosed younger.

There is no doubt (in my mind, anyway) that the increase in diagnoses of autism, especially Asperger’s, is due to a better understanding of what Asperger’s is and an increased desire of parents to understand why their kids are “different”. Many are being diagnosed now that might not have been diagnosed before, and demanding (and receiving) treatment they may not have received before.

I can’t help wondering what these individuals - and the world - may be missing out on because we want to catch and “fix” their differences early in life. We want to make life “easier” for these kids and their parents in the short term, but what is the impact to the long term? (This is kind of a different take on my earlier question, “What would a world without autism look like?“)

(Just to be clear, I’m not advocating not diagnosing children - or adults - if a diagnosis is warranted. I’m just asking the question because I think the answers, even if only hypothetical, can give us some insight into why we think the way we do about autism and why we do the things we do about autism.)

UPDATE: As I finished writing this, I saw Your Advice Requested: Next Steps for a Teen Diagnosed with Asperger Syndrome? over at About.com. The questions I’ve asked in this post were a hypothetical to get you thinking about what impact a diagnosis and subsequent treatment would have had on an undiagnosed autistic. If you’ve had a chance to consider those questions, your thoughts on them should help you come up with an answer to Lisa’s question.

With IEP season upon us (at least for us), I thought it would be worthwhile to re-post this, which I originally posted last August. The text has been altered slightly based on Joe’s recommendations to the original.

= = == === =====

As a young Army officer, I read Sun Tzu’s Art of War many times (in different versions). When I transitioned into the civilian workforce, I realized that many of the ideas would translate to the world of business. (Not literally, of course. For example, Sun Tzu’s demonstration of leadership ability using the Emperor’s concubines as soldiers.)

The Art of War can also be applied to many other common activities, such as the IEP. You can pull from many quotes, but here is my favorite:

Know the enemy and know yourself; in a hundred battles you will never be in peril. When you are ignorant of the enemy, but know yourself, your chances of winning or losing are equal. If ignorant both of your enemy and yourself, you are certain in every battle to be in peril.

Of course, this may need some translation* into more relevant wording. Such as:

Know the district administration and their stated (and unstated) goals and resources, and know your rights and what is best for your child; in a hundred IEP meetings you will never fail to get what you need.When you are ignorant of what the district’s goals or resources are, but know your rights and your child’s needs, your chances of getting what you need in the IEP are 50/50.

If you are ignorant of both the district’s goals/resources and your rights and needs of your child, you are certain in every IEP meeting to get what you get, and probably not what you really need.

Of course, this important piece of advice can just as easily be translated into the school district perspective, I’ll leave that exercise to you.

Based on my personal experience, conversations with other parents, and conversations in the blogosphere, my guess is that most people (from both sides) go into IEP meetings knowing themselves, but not their “enemy.” As a result, we often see winners and losers in the outcomes of IEPs, the result of hard fought battles that leave everyone bitter and exhausted.

What would happen if both sides heeded this advice and came in knowing themselves and the “enemy”? According to Sun Tzu, both should expect to win. But both sides can’t “win”, can they?

To that I answer a resounding, “Yes, of course both sides can win.” Wouldn’t that be a nice change?

* (If you are interested in some thoughts on translation within a language, check out my post Knowledge in Translation on my No Straight Lines blog.)

===== === == = =

As a young Army officer, I read Sun Tzu’s Art of War many times (in different versions). When I transitioned into the civilian workforce, I realized that many of the ideas would translate to the world of business. (Not literally, of course. For example, Sun Tzu’s demonstration of leadership ability using the Emperor’s concubines as soldiers.)

The Art of War can also be applied to many other common activities, such as the IEP. You can pull from many quotes, but here is my favorite:

Know the enemy and know yourself; in a hundred battles you will never be in peril. When you are ignorant of the enemy, but know yourself, your chances of winning or losing are equal. If ignorant both of your enemy and yourself, you are certain in every battle to be in peril.

Of course, this may need some translation* into more relevant wording. Such as:

Know the district administration and their stated goals and resources, and know your rights and what is best for your child; in a hundred IEP meetings you will never fail to get what you need.

When you are ignorant of what the district’s goals or resources are, but know your rights and your child’s needs, your chances of getting what you need in the IEP are 50/50.

If you are ignorant of both the district’s goals/resources and your rights and needs of your child, you are certain in every IEP meeting to get what you get, and probably not what you really need.

Of course, this important piece of advice can just as easily be translated into the school district perspective, I’ll leave that exercise to you.

Based on my personal experience, conversations with other parents, and conversations in the blogosphere, my guess is that most people (from both sides) go into IEP meetings knowing themselves, but not their “enemy.” As a result, we often see winners and losers in the outcomes of IEPs, the result of hard fought battles that leave everyone bitter and exhausted.

What would happen if both sides heeded this advice and came in knowing themselves and the “enemy”? According to Sun Tzu, both should expect to win. But both sides can’t “win”, can they?

To that I answer a resounding, “Yes, of course both sides can win.” Wouldn’t that be a nice change?

* (If you are interested in some thoughts on translation within a language, check out my post Knowledge in Translation on my No Straight Lines blog.)
- - — — —–

Quite a while back I posed the (mostly) rhetorical question, “Why doesn’t every child have an IEP?”

I was brought back to this train of thought recently by a passage in Roy Richard Grinker’s Unstrange Minds (emphasis is mine):

To be sure, debate is brewing about whether some of the these higher-functioning children should be classified as autistic or even disabled. Some disability experts contend that the problems encountered in educating children with Asperger’s Disorder lie less with the individual child than with the educational system. The U.S. educational system, they suggest, has disseminated Asperger’s Disorder as a category because it is useful to its attempt to make the student body as homogeneous as possible. The paradox they identify is that a child who doesn’t fit in has to be seen as somehow impaired in order to justify an effort to normalize him.

This trend toward ‘homogenized education,’ an attempt to make sure that everyone* learns the same thing in the same way, reminds me of many - mostly misguided - attempts to do something similar in business. If you’ve ever heard the term Business Process Engineering, you know exactly what I’m talking about.

The fallacy in this approach, of course, is that education and learning are not processes that lend themselves to efficiency. Not perfect efficiency, anyway. That’s not to say that their aren’t things that can be done to improve the process.

But identifying a process and then trying to make everyone adhere to, and excel in, that process just won’t work in education (just like it doesn’t work in business).

* An exception to this are the “gifted” children, which I wrote about here.

In our local paper a couple of weeks ago was the article Parents, students fear for future of gifted programs. In a nutshell, gifted students and their parents are asking for exactly what many parents of autistic kids are trying to avoid- segregation from the regular classroom:

The resolution notes that gifted students have educational and developmental needs that differ from school populations as a whole, and the board believes gifted students “require programs or services beyond the level ordinarily provided through the regular school program.”

“I moved to Rockwood due to the gifted programs, which I hope we can keep at their current level,” parent Karen Smith said. “The way gifted children learn is so different that they need stimulation and different types of (teaching).”

Parent Julie Loos said the gifted program “prepares my children for real-world solutions.”

Replace “gifted” with “autistic” and I think the statements are just as valid. Why, then, do so many parents of autistic kids want to simply put their kids in the mix with the ‘normal,’ instead of demanding the “stimulation and different types of teaching” that their learning style and abilities demand?

At the same time, programs for the gifted are facing many of the same challenges as ‘regular’ special education:

[They] favor guidelines including a means to monitor qualifications of teachers hired by districts to teach in gifted programs; continuation of certification requirements for gifted teachers; maintaining state guidelines for identifying gifted students; a means to monitor and report the number of students identified by districts as gifted; requiring districts to annually report to the state concerning whether they provide gifted programming and its nature; providing information on gifted programs on districts’ annual report cards; and enhancing the Missouri School Improvement Program standard for gifted programs, so they become more important to the overall accreditation process.

Let the battle for the buck$ begin.

Update (21 Feb 08): Marla has posted a good discussion of this topic from a more personal perspective.
- - — — —–

tagged as: Autism, Gifted, Education, Parenting, Missouri, Special Education