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.

Changing things up: time for a new theme, new name

My focus on this blog is on the content, so I try not to mess around with the design/layout very much. There comes a point, though, when things need to be relooked and freshened up, and that time has come around again.

I’ve been looking at different themes, with an eye on going even more minimal than I already am. Every time I’ve considered going really minimal, I still always end up with something a bit more “busy” than what I really wanted. After reading Linchpin, I now realize that I was just giving in to the resistance, doing what I thought others would want or expect me to do.  (Who are these “others”, anyway?)

After some quick research, I’ve put the Wu Wei theme by Jeff Ngan at the top of my short list of possible themes. I like the look, and the philosophy, of the theme. If you use Wu Wei, I’d love to hear from you.

As for the name of the blog, I’m not really sure what I was thinking including the word cum in the title. It doesn’t really matter that it is a Latin word in a Latin phrase. You would not believe some of the search terms that end up pointing here (OK, maybe you would) just because of that word. A bit on the Colbert Report last night about the renaming of the magazine “The Beaver” to “Canada’s History” also got me wondering about how spam filters would treat anything from here.

So, I’m changing the name to Brett’s Waste Blog. Shouldn’t be anything too controversial with that. Plus, I think it better reflects what this blog is all about.

This shouldn’t affect your experience with the blog, especially if you view this mostly through RSS. Just wanted to let you know in case you find your way here sometime and wonder if you are in the right place.

Putting away my 29 Marbles

I think this has been a long time coming, but it is finally time to retire the blog “29 Marbles.”  There are several reasons behind this decision, but the biggest is that I’m tired of writing about autism separately from everything else, as if it is something apart from the rest of my life.  It’s not.

I’ll still be writing about autism, with the same random frequency as I do here, on a new blog I’ve started called Theoria cum Praxi.  Here is the direct link to the autism category.  If you subscribe to the RSS feed and want to continue to receive updates, you don’t have to do anything.  I’ll be updating the feed info at Feedburner within the next couple of days.  Of course, feel free to subscribe to the full feed at http://feeds.feedburner.com/TheoriaCumPraxi.  This new blog will also fill in for the also retired No Straight Lines, so I will be addressing the life/work topics from there as well.

I hope to see you all there.

So you want to be interviewed about autism…

Over the past couple of months, I’ve noticed many complaints from adults with autism that they are tired of non-autistics speaking for them.  The fact that I’ve only recently really noticed these complaints doesn’t mean the complaints haven’t been around longer than that, nor does it mean that the complaints aren’t valid.  There are many cases of non-autistics trying to say what they think is best for autistics.  (I don’t think I need to go into specifics.)

However, this is a distinct problem from something that has come up more recently:  complaints about the media choosing to interview non-autistics instead of autistics when producing stories about autism.   The most recent example of this is the reaction to Kristina Chew’s interview with Newsweek on the subject of parent’s reactions to “political pandering” to parents of disabled children.

Now I don’t know how Newsweek chose Kristina for the interview, but I have the feeling it had a lot to do with the fact that she blogs about her experiences parenting an autistic child. Not only does she blog, she blogs extensively, prolifically, and very eloquently.  In short, the interviewer already had a pretty good idea of what Kristina would say in response to certain questions, and in those cases where she didn’t she had a pretty high level of confidence that Kristina would come through.   Reporters are like anyone else:  if there is an “easy” way to do their job and a “hard” way, they will choose the easy way.

If you would like for reporters to seek out your opinion on something you care about, the trick is to make them see you as a way to make their job easy.  Blogs are a great tool to achieve this.   If you want to get your word out about being the parent of an autistic child, write about being the parent of an autistic child.  If you want to get your word out about being the autistic parent of an autistic child, write about being the autistic parent of an autistic child.  If you want to get your word out about life as an autistic adult, write about your life as an autistic adult.

It’s as easy as that.

My del.icio.us autism

Quite often as a I read stories and blogs about autism, I find something that I want to return to later or that I want to note with a short comment but don’t have the time nor inclination to blog.  So I’ve been trying to use Delicious, the social bookmarking site, to help me do that.  Because I thought that the people who subscribe to and read this blog might be interested in what I’m bookmarking, I used the Link Splicer feature in FeedBurner to include my bookmarks in my FeedBurner feed for this blog.  Which worked fine, except….

I had failed to take into account how this would impact my feed’s presence on the Autism Hub‘s own feed.  Apparently,  because the Hub feed is set up as an aggregator and not RSS a simple link to the site I bookmarked – instead of a link that showed the bookmark link along with my comments – is what Hub subscribers saw.  (I must admit, I never click the links for my own posts in the Hub feed 😉  So, I’ve disabled the Link Splicer feature to alleviate this problem.

If you are interested in my delicious autism feed, there are three ways you can see it:

  1. I have added my delicious autism feed as a widget on the blog site, so you can see it there.
  2. You can visit my delicious autism tag page.
  3. You can subscribe to the my delicious autism RSS feed, and get it in your feed reader of choice.

You may also be interested in the complete set of autism tagged bookmarks, too.

Rehashing old ideas

Three and a half years and nearly 250 posts.  That’s the life so far of 29 Marbles. And to tell the truth, I’ve run out of new things to write about.  Not that there isn’t always something happening in the world related to autism, but like everything else it all seems to happen in cycles.  Different day/month/year, the same stories and questions in different clothing.   

Nowhere is this more evident than in the referral logs for the site.  Most hits come either from the Autism Hub, or from search results.  Sometimes the search queries are on things I wrote about years ago, sometimes more recent.  But inevitably, the same questions keep coming back around.

I first started writing this blog to help me sort through my own feelings and thoughts on autism.  That goal is accomplished; I have a much better conscious understanding now than I did three and a half years ago. But there are many others out there still forming the questions in their minds and looking for answers.   Among those nearly 250 posts are what I feel are good responses to some of those questions.  

I’m sure I’ll continue to write the occasional “new” post, but for now I’m going to dig into the archives and bring out those that answer the questions I see in my referral logs.   Who knows, I might even have something new to add to those things I haven’t given much thought to in a while.

Just the way it is (but don’t you believe them)

Frequent readers of this blog know that in my attempt to understand autism better, I have a tendency to see connections in things that aren’t always directly related to autism.  A lot of times this will come in the form of a song, a TV show, or a main- or sub-theme in a movie (like the X-Men trilogy).

My post yesterday brought to mind Bruce Hornsby‘s (excellent) song, The Way It Is (from the album of the same name).

They say, “Hey little boy you can’t go
Where the others go
‘Cause you don’t look like they do”
Said, “Hey old man
How can you stand to think that way
Did you really think about it
Before you made the rules”
He said, son

That’s just the way it is
Some things will never change
That’s just the way it is
Ah, but don’t you believe them

“Don’t you believe them.”  Don’t listen when someone tells you that you can’t change things, that this is how it was meant to be.  Nothing is “meant to be”, that is the wonder of being human, that we determine what is for ourselves.

Well they passed a law in ’64
To give those who ain’t got a little more
But it only goes so far
Because the law don’t change in another’s mind
When all it sees AT the hiring time
Is the line on the color bar

That’s just the way it is
Some things will never change
That’s just the way it is
That’s just the way it is, it is, it is, it is

Note that in the chorus after the last verse, Hornsby never says “don’t you believe them”.  I don’t know if this was intentional or not, but it is definitely true.  You can make a law, you can tell people what they have to do, but you can’t tell them how to think about others.  That takes education, persistence, and persuasion.

And that, I believe, is the challenge we all face in gaining more understanding and acceptance for autistics, indeed for all people who are different.