Tag Archives: Complexity

Autism and “I”

Since I signed up today for the Strange Loop software developer conference here in St. Louis, it seemed fitting to repost this article, originally published on my autism blog nearly three years ago.
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Earlier this summer [2007] I read Douglas Hofstadter’s new book, I Am a Strange Loop. As Hofstadter mentions early in the book, a more appropriate title would have been “I” is a Strange Loop; the book is about the nature of consciousness, that elusive concept of “I”, and not an autobiographical work as the actual name of the book suggests.

Hofstadter’s works have been among my favorites since I read his first book, Godel Escher Bach: An Eternal Golden Braid, in high school. The new book is, in fact, an updating of the ideas he first expressed in GEB. I have long hoped that he might address issues of the mind and consciousness in terms of atypical minds (such as autism), but aside from some passing discussion of those minds, I Am a Strange Loop does not provide any real insight into how the concept of “I” fits with autism.

On Monday, I was pleased to find a paper that specifically addresses the question of autism and “I”, Self-Referential Cognition and Empathy in Autism, co-authored by Michael V. Lombardo, Jennifer L. Barnes, Sally J. Wheelwright, and Simon Baron-Cohen. From the paper’s abstract:

Background. Individuals with autism spectrum conditions (ASC) have profound impairments in the interpersonal social domain, but it is unclear if individuals with ASC also have impairments in the intrapersonal self-referential domain. We aimed to evaluate across several well validated measures in both domains, whether both self-referential cognition and empathy are impaired in ASC and whether these two domains are related to each other.

Conclusions/Significance. We conclude that individuals with ASC have broad impairments in both self-referential cognition and empathy. These two domains are also intrinsically linked and support predictions made by simulation theory. Our results also highlight a specific dysfunction in ASC within cortical midlines structures of the brain such as the medial prefrontal cortex.

Instead of looking at autism as a syndrome of self-focus (the Kanner approach), the paper starts from the concept of “absent-self” put forth by Uta Frith in her book Autism: Explaining the Enigma. I had not heard of Frith before reading this paper, so I can’t really comment on her ideas. But the paper itself seems to make sense. I’m still going through it, trying to understand all that they are studying and what their results mean. (I did learn a new word:alexithymia – difficulty identifying and describing one’s own emotions.)

My first time through I Am a Strange Loop was to soak in the big concepts. I typically wait a few months before re-reading something like this so I can get into the details, but I think I’ll start again sooner than that. (At the moment, I’m reading Steven Pinker’s latest book The Stuff of Thought.) Now that I have a bit more information about autism and “I”, I’ll have a better context for processing what I read.

Another interesting note about the paper, it was originally published by the Public Library of Science under a Creative Commons license. The PLoS home page describes it as a “A new way of communicating peer-reviewed science and medicine”, so I will assume the paper has been appropriately peer reviewed. But I think I will do a bit more checking just to be sure. (Of course, any insight from readers here would be greatly appreciated.)

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Chances are very good that I will re-read I Am a Strange Loop again before Strange Loop; curious to see what I get from it this time.

What’s in a label? Autism, Asperger’s, and the DSM V

Several years ago, I wrote a two part article on my thoughts about whether autism should remain in the DSM. Here’s what I came up with:

For now, we need to keep autism in the DSM, because it serves as the way for autism parents to help their children get the services they need to succeed in the world.

The current draft of the DSM V, available for review and comment, still includes autism – now referred to as Autism Spectrum Disorder (instead of  Autistic Disorder). However, the DSM V proposal recommends that Asperger’s Disorder and Pervasive Development Disorder Not Otherwise Specified (PDD-NOS)be subsumed into an existing disorder: Autistic Disorder (Autism Spectrum Disorder)“.

As you might imagine, there has been a lot of discussion about this. I’m not really sure what I think of this change yet, there are so many aspects to consider:

  • What is the impact to those already diagnosed with Asperger’s or PDD-NOS? In terms of available services? In terms of individual perceptions of self? Will they have to be rediagnosed, or will they be “grandfathered” in to an Autistic Spectrum Disorder?
  • What is the impact to future diagnoses? Will there be fewer children diagnosed autistic, or more? Will a child who would have been diagnosed with Asperger’s or PDD-NOS be diagnosed as autistic? How will this affect funding of special education programs?
  • Will parents accept a diagnoses of “autistic” for kids they believe are “too high functioning” to be autistic but whom they believe need the services that come with the diagnosis?
  • How will special education programs be impacted? Will they be able to avoid a “one-size-fits-all” approach to treating “autism” as if it is a singular thing, or will they remain flexible enough to develop education plans based on the needs of individuals?

And more, many more.

It is the last of my bullets above that most concerns me. Anyone who is involved in special education – as a parent, student, teacher, or administrator – knows that even now Individual Education Plans (IEP) are typically anything but individual. (There are, of course, exceptions, but you will find many many more horror stories than success stories about IEPs.)

I agree with Roy Richard Grinker when he writes that “the stigma of autism is fading”, though I’m not sure I agree with him that this is happening “fast”. I also agree that across the three current diagnoses there is a lot of commonality, both in terms of symptoms and “treatment”.  But there are differences, and I think that having the three separate diagnoses emphasizes the “spectrum” – or, as Grinker calls it, a “continuum”.

My experience leads me to believe that many people don’t understand the concept of a spectrum unless they can clearly see the boundaries between the different layers of the spectrum. Only when you see a rainbow of light coming out of a prism can you see that white light includes all of those colors, and that each of those colors has its own unique properties. We still need this prism effect with autism.

We are making progress in understanding, but we still have a long way to go. So for that reason, I’m leaning toward the opinion that Asperger’s and PDD-NOS should stay in the DSM. At least for now.

What organizations need isn’t always what they want

From Seth Godin’s recent article Why ask why?

The secret to creativity is curiosity… The student with no curiosity… is no problem at all. Lumps are easily managed.

Same thing is true for most of the people we hire. We’d like them to follow instructions, not ask questions, not question the status quo.

This reminded me of something I jotted down in my notebook from Richard Farson’s book Management of the Absurd:

Real creativity, the kind that is responsible for breakthrough changes in our society, always violates the rules. That is why it is so unmanageable and that is why, in most organizations, when we say we desire creativity we really mean manageable creativity. We don’t mean raw, dramatic, radical creativity that requires us to change.

As much as organizations say they want to be innovative and groundbreaking, they usually don’t mean they want each of their individual employees to be innovative and groundbreaking.

Even though that is often exactly what they need.

Don’t judge a new book by an old cover

Is Google making us stupid, as Nicholas Carr and others have told us? I don’t think so. Instead, it is making us differently intelligent. Carr, et al are simply judging this difference, the new type of intelligence, against the old standards.

In his article The War On Flow, 2009: Why Studies About Multitasking Are Missing The Point, Steven Boyd makes the point much more eloquently:

If you use industrial era yardsticks based on personal productivity to try to figure out what is going on in our heads, here, in the web of flow, you will simply think we are defective. We’ll have to learn how to measure the larger scope — the first and second closure of our networks — and distill from our media-based interactions how we influence and support each other. Get away from counting the calories, and get into how it all tastes.

I found Boyd’s article through Jim McGee’s article Asking more relevant questions about focus and multitasking, in which Jim adds his own take on the question of multitasking:

The question is not about whether multitasking is a better way to do old forms of work; it is about what skills and techniques do we need to develop to deal with the forms of work that are now emerging. … One of the useful things to be done is to spend a more time watching the juggling (to borrow Stowe Boyd’s image) and appreciating it on its own terms instead of criticizing it for what it isn’t.

I have to admit I’m a bit old-school, and still have some work to do on my “juggling”. In some ways, I  miss the old days of a “simple catch”. At the same time, I love the challenge that juggling presents and am working my way up to having ever more balls in the air. 

Who knows, one day I may graduate to flaming torches or even chainsaws.

(For a great intro to juggling and how you can apply it to work and life, check out Michael Gelb’s More Balls Than Hands: Juggling Your Way to Success by Learning to Love Your Mistakes.)

A systems approach to food and nutrition – Michael Pollan’s “In Defense of Food”

Eat food. Mostly plants. Not too much.

These seven words make up the entirety of the “eater’s manifesto” that is the subtitle of Michael Pollan‘s book In Defense of Food: An Eater’s Manifesto. Of course, if the “doing” were as easy as the “saying”, Pollan wouldn’t have needed 200+ pages to explain the three rules embodied in these seven words.

At its core, Pollan’s argument is one for a systems view of food and nutrition and against attempts to reduce the complexity of the “food web” into its various components, each considered in isolation from the other. He points to the Western conception of food, especially our current “food science” and “nutrition industry”, as an example of the dangers of the reductionist view point.

As Pollan himself mentions in the introduction, it seemed to me at first to be a little bit strange for someone to be telling me to “eat food”. I mean, what else would I eat? The answer, as it turns out, is that a lot of what I – and quite probably you – eat is actually what Pollan refers to as “edible food-like substances”.

These food-like substances are, according to Pollan, the result of “nutritionism”, a deliberate effort by food scientists – and the companies that employ them – to break food down into it’s component parts, the macro- and micro-nutrients, so that these nutrients can be efficiently – and profitably – delivered to consumers.

map-in-defense-of-food

The topics on the left side of the mind map above give an idea of how Pollan believes “nutritionism” has led to many of our current health problems, including the epidemic of obesity. He covers these in the first two sections of the book.

The topics on the right side give an idea of  the key points behind the three rules of his eater’s manifesto and how they all work together as a system. He covers this in section 3 of the book.

If you are inclined to systems thinking, Pollan’s argument will make perfect sense. There may be some areas you could nit-pick, but the overall approach is sound. If, on the other hand, you are not a “systems-thinker”, you may very well find yourself a bit confused and uncomfortable. We are, in general, so accustomed to worrying about all the parts of nutrition that it will take a very concerted – and conscious – effort, to “let go” and trust the system.

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The mind map in Mind Manager 6 Pro format.

Autism and the tragedy of the commons

Last summer, I put Cooperation and the tragedy of the commons, from the Anecdote blog,  in my “to blog” pile.  It seemed relevant, but I just couldn’t quite figure out how.  In his post about an Alliance for Autism, Mike Stanton raises the problem of reconciling the individual wishes and desires of parents and adults with autism with the long term goals of autism advocacy, which has helped me better understand the relevance.

The problem Mike raises shows up in many different domains and is known as the tragedy of the commons.  Simply stated, tragedy of the commons is:

a dilemma in which multiple individuals acting independently in their own self-interest can ultimately destroy a shared resource even where it is clear that it is not in anyone’s long term interest for this to happen.

The anecdote post references a story on washingtonpost.com discussing the Democratic primary race between Barack Obama and Hillary Clinton and the results of a study done by social psychologist W. Keith Campbell.  From the study:

… because the volunteers did not know whether their kindness would be reciprocated by others or exploited by competitors, people raced to cut as much timber as they could and quickly razed the forests to the ground. Groups with volunteers more willing to think about the collective good preserved their forests longer. But selfish people within these groups had a field day exploiting the altruists — and the forests perished anyway.

Campbell’s experiment is particularly relevant to politics, because he found that groups with a larger number of narcissists — people with an inflated sense of their own importance — tended to raze the forests much faster than groups in which people felt less self-important. Politics, unfortunately, happens to be a domain that self-selects people with an inflated sense of their own importance.

Political scientist Edella Schlager offers the following as a solution:

… the only way to prevent tragedies of the commons is to set up structures in advance that reward long-term thinking and punish short-term selfishness. This happens mostly among competitors who share long-term interests and have social relationships of trust: If you and I are Maine lobstermen, we are likely to agree to set up limits on the overall catch each year because we see our future, and our children’s future, inextricably linked. In the absence of trust and long-term relationships, the only way to prevent these tragedies is to have an outside regulatory agency step in to establish — and enforce — limits.

Sadly, many of the “competitors” in the autism community (communities?) don’t seem to think we share any long term interests, despite the fact that I’m sure we probably do.  Nor are there too many “social relationships of trust”; even here on the Hub there is a general undercurrent of mistrust between adults with autism and non-autistic parents, stemming I think from the lack of shared long term interests mentioned above.

On the other hand, it is easy for the Hub’s “competitors”, as exemplified by the folks at Age of Autism, to avoid the TOTC:  they speak with a single voice (“Vaccines are bad”, “Vaccines caused my kid’s autism”, “Neurodiversity believers are deluded and in denial”) and trust that everyone on “their side” will stay on message.  There are, of course, some more reasonable voices among the bio-med group, but it is the vocal (apparent) majority that makes the most noise.

Mike is on the right track with his proposed Alliance for Autism.  The first step is to figure out what our shared long term interests are, and from there work to build the trusting social relationships that we need to move forward.  Who knows, we might even find that we have some common ground with our “competitors” in what we want for our kids when they become adults.  Wouldn’t that be something.

I’ll kick it off with a couple of my own long term interests and goals:

  • My son receives an education (from me, the schools, his peers) that allows him to participate in the world around him to the extent that he chooses to participate.
  • The general public becomes more aware that adults with autism are adults first, that they have dreams, desires, and interests just like everyone else, and should be allowed and empowered to pursue those dreams, desires, and interests.
  • A legal environment that enforces the above, when necessary, in the workplace and other areas where autism, and other disabilities, are treated with disdain and disrespect.

What if they had been diagnosed autistic?

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.

Maybe we’re all autistic (redux)

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.

Genetic engineering and autism

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.)

The genetic basis of … everything (or, Maybe we’re all autistic)

Maybe it’s because I’ve been around autism for so long now, but I can’t understand why anyone would find it so surprising that a possible “cause” of autism is a complex interaction of genes. Several recent stories (such as those documented by Kristina Chew and Mike Stanton) have made this point as if it is some new discovery. Granted, it may have only recently been scientifically validated, but this one seems to me to be common sense.

You might as well ask questions like, “What is the cause of introversion? Extroversion? Natural athletic ability?”

I can hear many people saying something along the lines of, “But those ‘conditions’ are normal.” Are they? I mean, in a statistical sense, are they really ‘normal’? I would say no.

If you look at the introvert/extrovert question, I would guess (yes, I’m guessing, no science here) the bell curve of this spectrum would have a few at either end and the rest (you guessed it) within two standard deviations of the mean. Same for athletic abilities.

If we look at autism in this way, as a spectrum across all people (and not just those we currently refer to as autistic), I propose that we might see something similar. On the left side of the bell curve, you would have those that are very non-autistic, the incredibly sociable communicative, etc etc. On the right side, you would have those that are very autistic (what we now simply call autistic). And in the middle, within two standard deviations, would be the vast majority of us showing our mix of autistic and non-autistic traits.