29 Marbles

Another song that brought my experiences with autism to mind, Dream Theater‘s Solitary Shell, from the Six Degrees of Separation CD.

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

He seemed no different from the rest
Just a healthy normal boy
His mama always did her best
And he was daddy’s pride and joy

He learned to walk and talk on time
But never cared much to be held
And steadily he would decline
Into his solitary shell

As a boy he was considered somewhat odd
Kept to himself most of the time
He would daydream in and out of his own world
But in every other way he was fine

He’s a monday morning lunatic
Disturbed from time to time
Lost withing himself
In his solitary shell

A temporary catatonic
Madman on occasion
When will he break out
Of his solitary shell

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

I have no idea if this song was written to be specifically about autism, but I doubt it.  It could just be about an extremely introverted kid.

The question that pops to mind:  Why does the child in the song need to “break out of his solitary shell” at all?

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.

This is the fourth of three posts of excerpts from Elizabeth Moon‘s novel The Speed of Dark. (Part one – How normal are normal people?,  part two – What does it meant to be “me”?, and part three – Do I need to be healed?)

Like any good story, The Speed of Dark has an antagonist that provides the main character his dilemma and challenge.  I thought it might be worthwhile to share some of Mr. Crenshaw’s thoughts on Lou and his co-workers.

“Your guys are fossils, Pete.  Face it.  The auties older than them were throwaways, nine out of ten.  And don’t recite that woman, whatever her name was, that designed slaughterhouses or something —.

“One in a million, and I have the highest respect for someone who pulls themselves up by their bootstraps the way she did.  But she was the exception.  Most of those poor bastards were hopeless. Not their fault, all right? But still, no good to themselves or anyone else, no matter how much money was spent on them. And if the damned shrinks had kept hold of the category, your guys would be just as bad. Lucky for them the neurologists and behaviorists got some influence. But still…they’re not normal, whatever you say.

…

“The law does not require a company to bankrupt itself. That notion went overboard early this century. We’d lose the tax break, but that’s such a tiny part of our budget that it’s worthless, really. Now if they’d agree to dispense with their so-called support measures and act like regular employees, I wouldn’t push the treatment – though why they wouldn’t want it I can’t fathom.”

As you might be able to gather, Mr. Crenshaw’s motives for pushing a cure are somewhat less than altruistic.  But it is quite obvious what he thinks of autistics.  Not all that different from how many view autism, and autistics, today.

This is the third of three posts of excerpts from Elizabeth Moon‘s novel The Speed of Dark. (Part one – How normal are normal people?, and part two – What does it meant to be “me”?)

In this excerpt, Lou is considering what it might mean to be “healed”:

If my self definition is limited and rule-dictated, at least it is my self-definition, and not someone else’s. I like peppers on pizza and I do not like anchovies on pizza. If someone changes me, will I still like peppers and not anchovies on pizza? What if the someone who changes me wants me to want anchovies…can they change that?

…

Asking if I want to be healed is like asking if I want to like anchovies. I cannot imagine what liking anchovies would feel like, what taste they would have in my mouth. People who like anchovies tell me they taste good; people who are normal tell me being normal feels good. They cannot describe the taste or the feeling in a way that makes sense to me.

Do I need to be healed? Who does it hurt if I am not healed? Myself, but only if I feel bad the way i am, and I do not feel bad except when people say that I am not one of them, not normal. Supposedly autistic persons do not care what others think of them, but this is not true. I do care, and it hurts when people do not like me because I am autistic.

As I finished up my initial draft of this, I came across Estee’s post What do we think we know? We know what it is like to be us, we know how to do things, we just can’t always explain it.

Hopefully I’ll have my full review done by the end of this (thankfully long) weekend.

One of the key sub-plots in Elizabeth Moon’s book The Speed of Dark involves some corporate intrigue and an almost stereotypical management vs. labor conflict.   At the heart of the issue is a question of the efficiency vs. effectiveness of the autistic workforce.   It’s probably because of my recent reading of the book that Jack Vinson’s post People still say these things? caught my attention.  (Attention, what attention?)

In that post, Jack references a quote that “amazes me every time I see it used in real life”:

Regrettably far too many executives remain firmly convinced that the only way to increase productivity is for their employees to work harder or faster. A chief executive in Northern Ireland was quoted in his company magazine as saying; “Any employee not producing value-added work all the time is a waste”. This attitude stems from the continued misunderstanding of productivity…

As I read this quote, what occurred in parallel in my thinking was the following:

Regrettably far too many people remain firmly convinced that the only way to be of value to society is to do more faster. A ‘normal’ person might say; “Any autistic (or other disabled person) not keeping up with me and everyone else all the time is a waste”. This attitude stems from the continued misunderstanding of an individual’s value to society.

If you are different, your difference has to be accounted for.  Doing that takes time, throws a proverbial wrench in the works.   And people with a plan to follow and schedule to keep don’t like those wrenches.

I don’t know where this attitude has come from, but I’d guess it has its deep roots in the Industrial Revolution and nourishment from the teachings of Scientific Management, Business Process Re-engineering, Total Quality Management, etc ad infinitum.

The mentality of work in our society has permeated our mentality of community.

This is the second of three posts of excerpts from Elizabeth Moon‘s novel The Speed of Dark. (Part one – How normal are normal people?)

In this excerpt, Lou is considering what it means to be “Lou”, and how he would be different as an adult if he had been different when he was younger.

If I had not been what I am, what would I have been? I have thought about that at times. If I had found it easy to understand what people were saying, would I have wanted to listen more? Would I have learned to talk more easily? And from that, would I have had more friends, even been popular? I try to imagine myself as a child, a normal child, chattering away with family and teachers and classmates. If I had been that child, instead of myself, would I have learned math so easily? Would the great complicated construction of classical music have been so obvious to me at first hearing? I remember the first time I heard Bach’s Toccata and Fugue in D Minor … the intensity of joy I felt. Would I have been able to do the work I do? And what other work might I have been able to do?

It is harder to imagine a different self now that i am an adult.

This particular scene resonated with me as I have had these same thoughts, from a parent’s point of view, as I’ve watched my son grow from a toddler to a 17-year old. (For examples, see Thoughts on curing autism and Whose decision is it?)

For some similar thoughts from a current day, real person with Asperger’s check out Steve’s post Marching to her own drum.

Next:  Do I need to be healed?

After seeing a reference to it in a comment to a blog somewhere last week, I picked up Elizabeth Moon‘s novel The Speed of Dark and read it over the weekend. The novel, set in the near future (30 years or so), is the story of Lou Arrendale, an autistic man presented with the possibility of being cured, his contemplation of what his decision – either way – would mean, and the consequences of his eventual decision.

I need to process it a bit more before writing a full review, but the short version of the review goes something like this: If you haven’t read this book yet, go out and buy it now and read it tonight.

As I pull together my thoughts for the full review, I’d like to share some key passages that really stood out to me as relevant to my own contemplation of autism, neurodiversity, and a cure (among many other things). This is the first of three such posts, my goal is to have a review done by the end of this coming weekend.

Some of Lou’s general thoughts on being normal:

I do not think everyone else is alike in every way. She [Dr. Fornum] has told me that Everyone knows this and Everyone does that, but I am not blind, just autistic, and I know that they know and do different things. The cars in the parking lot are different colors and sizes. Thirty-seven percent of them, this morning, are blue. Nine percent are oversize: trucks or vans. There are eighteen motorcycles in three racks, which would be six apiece, except that ten of them are i the back rack, near Maintenance. Different channels carry different programs; that would not happen if everyone were alike.

And some of his thoughts based on a specific situation:

Sometimes I wonder how normal normal people are, and I wonder the most in the grocery store. In our Daily Life Skills classes, we were taught to make a list and go directly from one aisle to another, checking off items on the list. Our teacher advised us to research prices ahead of time, in the newspaper, rather than compare prices while standing int eh aisle. I though – he told us – that he was teaching us how normal people shop.

But the man who is blocking the aisle in front of me has not had that lecture. He seems normal, but he is looking at every single jar of spaghetti sauce, comparing prices, reading labels. Beyond him, a short gray-haired woman with thick glasses is trying to peer past him at the same shelves; I think she wants one of the sauces on my side, but he is in the way and she is not willing to bother him. Neither am I.

Next up: What it means to be “me”.