Monthly Archives: August 2008

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.

They’re not normal, whatever you say

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.

Do I need to be healed?

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.

Why are we so intolerant of differences?

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.

What does it mean to be “me”?

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?

How normal are normal people?

The Speed of Dark - CoverAfter 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”.

Is truly objective research possible

The debates within the world of autism are nothing if not contentious, with claims by one group very often countered by another group as based on “flawed research” or contaminated by conflicts of interest that taint the results. I think we all like to believe that we are objective when we come up with our ideas, and collect data to support those ideas. (I know I do.) But maybe we’re not. Maybe we can’t be.

Here are some thoughts on the “relative” nature of research methodolgy from Lilia Efimova, currently engaged in research for her PhD (completely unrelated to autism or anything to do with autism).

…the validity of scientific claims is always relative to the paradigm within which they are judged; they are never simply a reflection of some independent domain of reality (Hammersley & Atkinson, 1994, p. 12)

…methods rest on philosophical presuppositions. These remain embedded in them, even if they are not taught or discussed or attended to explicitly. (Yanow & Schwartz-Shea, 2006, p. 370)

No context is value-free. Academic disciplines promote particular ways of observing, dissecting, measuring, interpreting, and otherwise making sense of the phenomena under investigation. One’s decisions may emerge within or resistant to these disciplinary structures. One’s decisions also derive from one’s research goals, which are seldom acknowledged in research reports but which meaningfully affect the design, process, and outcome of a study. (Markham, 2007)

…all research is a practical activity requiring the exercise of judgement in context; it is not a matter of simply following methodological rules (Hammersley & Atkinson, 1994, p. 23)

Visit Lilia’s original post for complete source information of the citations.

Stop assuming you know best

I came across the following in Michael Dowd’s Thank God for Evolution:

To have a powerful relationship with your own intuition and instincts – and thus to have a clear channel of communication with the creating, sustaining Life Force of the Universe (whatever you may choose to call It/Him/Her) – one must cultivate humility in this sense: Stop assuming that you know best how things are supposed to go in the world. Rather, try on an attitude of gratitude – not just for what is easy to be grateful for, but also for those challenges and difficulties in life for which you cannot yet detect a silver lining.

Having faith and being in integrity means trusting that each and every one of us is doing the best we can, given what we’ve got to work with at the time. It’s trusting that, from the perspective of the Universe, everything may be “right on schedule.”

Just thought I’d share.

The internet doesn’t make people stupid…

Over at Wired.com, David Wolman has posted an essay entitled The Critics Need a Reboot. The Internet Hasn’t Led Us Into a New Dark Age. The essay is a response to the numerous recent books and articles that paint “the internet and its digital spawn” as the cause of the growing shallowness and dumbing-down of society. I’ve been following this trend of blaming the internet as part of another interest of mine, Work Literacy, and that is how I came across this particular article.

What caught my eye, in terms of relevance for this blog, was Wolman’s take on the role the internet (and its digital spawn) plays. It’s not the cause of these problems, it is an enabler of these things for people, and a society, that is already pre-disposed to this way of thinking.

…in The Dumbest Generation: How the Digital Age Stupefies Young Americans and Jeopardizes Our Future (Or, Don’t Trust Anyone Under 30), Mark Bauerlein delivers a grim assessment of the state of young minds, rattling off statistics about faltering education and using such figures to buttress his assertion that the Internet, videogames, and IMs all serve to numb and dumb.

To be sure, there is plenty of evidence that ignorance and irrationalism are rampant. Pernicious fallacies have found a purchase among educated people who ought to know better: Vaccines cause autism, Saddam Hussein was behind the attacks of 9/11, power lines give you cancer, cell phones kill honeybees, and global warming is a scam orchestrated by tree-hugging liberals.

Yes, it must be acknowledged that the Web provides remarkably easy access to such bogus ideas. On top of that, there’s the human tendency to seek out information that supports preexisting assumptions, a behavior psychologists have dubbed homophily. The Web magnifies this echo-chamber effect.

Continuing his theme that technology is not the culprit, Wolman goes on to say:

But the latest crop of curmudgeons fail to acknowledge that there is not much new in this parade of the preposterous. The US has a long and colorful history of being taken in by the erroneous and irrational: Salem witches, the “War of the Worlds” radio broadcast, phrenology, and eugenics are just a few choice examples. The truth is that Americans often approach information — online and off — with a particular mindset. “Antirational junk thought has gained social respectability in the United States during the past half century,” notes Susan Jacoby in The Age of American Unreason. “It has proved resistant to the vast expansion of scientific knowledge that has taken place during the same period.” Jacoby argues that long-standing American values like rugged individualism and the need to question authority have metastasized into reflexive anti-intellectualism and disdain for “eggheads,” “elites,” and pretty much anyone who might be described as credentialed. This cancerous irrationalism isn’t pretty, but it isn’t technology’s fault, either.

If we do find ourselves in a new dark ages, it won’t be caused by the internet. It will be caused by people. (Of course, the internet will be there to document it all 😉

David Wolman is also the author of the Wired piece, The Truth About Autism: Scientists Reconsider What They Think They Know.

A meditation on individual expression

A couple of weeks ago, I posted a meditation on censorship. In light of all the recent discussion surrounding the film Tropic Thunder, I thought I should post this companion meditation on individual expression:

Emperors uphold censorship,
But extreme repression leads to extreme reaction.
Individualists believe in freedom,
But extreme expression leads to extreme reaction.

To answer the question I posed in my last post, “No, I don’t believe the creators of pop-culture have a responsibility for limiting their content to what is ‘acceptable’.” The nature of art is individual expression, and in that the ‘artist’ is responsible only to himself.

As the meditation above states, though, this unlimited expression might result in “extreme reaction.” Artists must accept the consequences of their expression. If they offend or anger a group of people, or even individuals, they should expect those people to express their own feelings. This could be a blog post, a letter to the editor, or a boycott.

In the case of Tropic Thunder, I don’t agree with calls for the film to be changed or for it to not be shown. That is an extreme on the “censorship” end of the spectrum. I do, however, support those who call for a boycott or other action against by individuals or groups about the film. That is an acceptable reaction to the individual expression of the film-makers.