29 Marbles

I don’t have a lot of details, but heard this in the local headlines on KWMU this morning. Just a couple of links on Google News, I expect more over the next few days (weeks)? From the Joplin Globe:

A statewide commission on autism spectrum disorders will be assembled and, by July 1 of next year, will produce a plan for Missouri to offer treatment, training and other services.

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The commission will be made up of representatives from the General Assembly, health-related state agencies and autism-related organizations, and parents. Kinder was filling in for Gov. Matt Blunt, who is out of state.

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Kinder spokesman Gary McElyea said members of the state commission should be chosen fairly quickly.

As you might imagine, there is a lot of disagreement about what exactly the commission should do, what should be its priorities, blah blah. I applaud the gesture, and the intent, of the commission, but I’ll withhold any real assessment until I see what they actually plan to do.

A consistent theme in my writing here is that parenting an autistic child is, first and foremost, nothing more than parenting a child. Yes it is different, and sometimes (OK, much of the time) more difficult than being the parent of a “normal” child, but that doesn’t change the fundamental nature of being a parent.

In response to Steve D’s call to revisit a favorite post I am reposting Enjoying the Scenery, which I originally posted in February 2006. I don’t know if this is my absolute favorite, but it is right there at the top.

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Sometimes our kids surprise us. We try and try and try to get them to do something, understand something, say something. They go for a long time, apparently ignoring (avoiding?) all of our best attempts. Then, all of a sudden, when we aren’t really looking (or when we’ve kind of given up), they do it, understand it, say it.

At those moments we feel good, not just for our kids and their accomplishments but for ourselves. Sometimes it is hard to put in the long hours, day after day, never quite knowing if it will pay off or not. This is especially true for the parents of autistic kids. But what can you do?

Here is a quote from George Leonard’s The Way of Aikido that struck a chord with me as I’ve been thinking about parenting and autism.

What we call “mastery” can be defined as that mysterious process through which what is at first difficult or even impossible becomes easy and pleasurable through diligent, patient, long-term practice.Most learning occurs while we are on the plateau, when it seems we are making no progress at all. The spurt upward towards mastery merely marks the moment when the results of your training “clicks in.”

To learn anything significant…you must be willing t spend most of your time on the plateau. [T]o join the on the path of mastery, it’s best to love the plateau, to take delight in regular practice not just for the extrinsic rewards it brings, but for its own sake.

Another way of looking at it comes from a saying I heard a while back, but can’t remember where:

A truly happy person enjoys the scenery on a detour

How’s the scenery on your detour?

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Two years later, I can tell you that the scenery is beautiful on this detour of ours. The road does get a bit rough at times, and I have to keep my eye on the road to keep from driving off, but that would be true on any other road as well.

I’m reposting this article because I think it is doubly relevant today: 1) it is autism awareness month; and 2) this is as much an issue today as it was last year. Again, it was a post from Kristina Chew that prompted me to repost this. (Thanks Kristina!)

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In her recent post Autism Speaks Now, Kristina Chew contemplates the discrepancies between the types of autism research actually being conducted and the types of autism research that are covered in the media (my emphasis):

[A] study by Stanford University researchers published in the February Nature Reviews Neuroscience notes, brain and behavior research on autism accounts for 41 percent of research funding and published scientific papers and only 11 percent of newspaper stories in the United States, United Kingdom and Canada. In contrast, 13 percent of published research was on environmental causes of autism but 48 percent of the media coverage was on this topic: When it comes to reporting on autism, there is a serious gap between scientific research and the mass media; in the case of some reporting on thimerasol and autism, parents are pitted against scientists. Autism Speaks, with its access to the full power of the media, will be getting its message out.

Kristina goes on to ask how scientists (and, by extension, we) can overcome this issue (emphasis is again mine).

I would be curious as to how scientists might “frame” some “hot button” issues in autism: As the back-and-forth in the comments on a post about David Kirby and Autism Speaks, facts and research studies can be cited, but people’s beliefs are not so easily swayed. What are vaccines and chelation but “highly politicized topics” in autism circles? How might a scientist refute such theories and treatments by “strategically avoid[ing] emphasizing the technical details of science”; by translating technical knowledge with an eye to the fact that this alone does not “drive decision-making or change minds”? It needs to be recognized that, when it comes to understanding autism, parents do not rely on facts and evidence and science alone; that emotions—however much acknowledged, or not—play a huge role.

We have to remember, too, that last sentence applies not only to parents but to the media who would reach those parents. And also to the people who are trying to get these parents to give money to pursue a cause.

To reach these people, you need to be able to get your message across quickly, to the point, and convincingly. While it may be possible to get the point across convincingly using the scientific data as a basis, this will not likely be either quick or to the point.

What we need is an “autism awareness elevator pitch.” Imagine you find yourself on the elevator with Oprah’s producer (to follow the thread started by Kristina), and you have until you get to the top floor to explain why Oprah should dedicate an hour to your view of autism. Here’s the quick sound byte that probably helped get Autism Speaks onto Oprah:

This is the national health crisis of our time……..This is bigger than AIDS. This is bigger than breast cancer, and almost no attention seems to be paid to it.

There a lot of ways to approach this (scientist, parent, autistic), I want to hear them all.

So…, what’s your pitch?

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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.

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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.)

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While writing my most recent post, I found myself back 2 1/2 years to something I wrote on the subject of the genetic nature of autism. The following quote from the article I was discussing is quite likely the source of my opinion, expressed in The genetic basis of … everything (Or: Maybe we are all autistic), that the “autism spectrum” isn’t restricted to those with an autism diagnosis (emphasis is mine):

Autism is not a “you have it or you don’t” disorder, Todd said. Instead, it is a highly inheritable continuum of traits, much like height or high blood pressure. The cutoff for being tall or short or having high or low blood pressure is somewhat arbitrary, he said. So is the diagnosis of autism. The measure of autism is usually the inability to cope in the real world, said NYU’s Hollander.

“People can be different without having a pathology,” Hollander said. “It’s only a disorder if it causes stress or interferes with function.”

Reminiscent of a comment from Laurentius Rex on a recent post.

Something to consider.

As far as I know, all of the arguments about the increase in autism diagnoses being too rapid to be purely genetic are based on an assumption of randomness in the process. From that perspective I must admit that it seems unlikely that you could explain the increase in autism diagnoses purely to genetics.

But is this really a random process?

This thought occurred to me yesterday when I heard a teaser for yesterday’s Talk of the Nation on NPR, on which they had a segment titled Genetically Engineering a ‘Perfect’ Baby. In the teaser, they played a quote from one of the guests in which he said something along the lines of:

We’ve been engaged in genetic engineering for hundreds, if not thousands, of years. It happens every night in bars and clubs and every where around the world, when men and women ’select’ the mate they want to help parent their child.

Which got me thinking: What if we (humans) have been engaged in a process of informal genetic engineering - maybe more appropriately referred to as selective breeding - over the past hundred years that has contributed to the increase in autism during that time, especially of the “high-functioning”, Asperger’s type of autism? I can hear many of you, even as I type this: What the hell are you talking about? And you can bet I’ve got my fire-suit on for all the flames that are sure to come my way. But I’m serious.

Consider this: Over the past 100 years or more, the engineers, scientists, mathematicians and other technically oriented people have become more important to the success and progress of our society. As these people’s importance has grown, so has their power and their desirability as a mate. As a result, these “geeks” have more opportunities to reproduce and further the survival of geek genes. When two geeks get together, especially if they are geeky in different ways, that is even more geekiness that passes down to their children.

Or, as a good friend once put it, “Geeks are breeding more now than they used to.” I apologize for the bluntness of the statement, or if it offends, but this is how she said it. (I’ve actually used that quote before, in an August 2005 post discussing the article Scientists begin to trace autism’s genetic roots in my hometown newspaper the St. Louis Post Dispatch.)

Does anyone know of any studies that address the non-randomness of mate selection and potential impact on genetic diversity, especially as it may relate to autism? I did a quick Google search, but didn’t really come up with much.

(Back on the subject of the Talk of the Nation segment, make sure you check it out. You can also join the conversation on the subject on their blog. Some very interesting comments so far.)