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.

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”.

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.