Imagine, just as an exercise, that beyond the one percent of the population diagnosable with autism, there is another four percent whose cognitive style is describable under the less rigorous category of the Broad Autism Phenotype, or BAP

Now imagine this progression extending not only into the future, but also in the opposite direction, spread over evolutionary time, over millions of years and thousands of generations.  Out of autism we may have come, and into autism we may be returning. This is the vision, in part and in my own words, of the man who launched this website a year ago now, Andrew Lehman.

April of this year saw two watershed events in Andrew’s life.  One was the publication of his book, Evolution, Autism, and Social Change, which pulled together the ideas he had been working out for years at Neoteny and elsewhere into an elegantly coherent whole.  The other event was an urgent, pre-emptive operation to head off the threat of a brain aneurysm which had been a closely surveilled, mostly quiet companion for some time.  While the surgery was successful, it has left Andrew with higher priorities and more pressing challenges than participating in online discussion.

The five entries with which Andrew launched Shift are gathered here; parts of these posts and others here made their way in some form into his book.  While I was invited to be the only other ground floor contributor besides Andrew, I’d like to recognize that his intention for Shift was that it be a commons for contributors, a place where many and conflicting viewpoints could be sorted through by readers.  For all that Andrew has a longtime and diverse following at Neoteny, we were both outsiders to the online autism community; I at least had little idea what a thoroughly polarized battlefield it was, or what we must have looked like wandering out onto this scarred, cratered landscape, earnestly soliciting contributors.

By March of this year, I had taken stock of what I felt was and was not already being done well in online autism discussion, and posted a handful of entries outlining where I believed Shift Journal could fill in the gaps.  Andrew responded by suggesting that I insert my name as Editor and Publisher; I took his suggestion (unnecessarily hi-falutin’ as this title still seems), thus concluding an eight-month dance I refer to as the Velvet Shanghai—eight months, apparently, being how long it took Andrew to see me convince myself that this site was as much my child as his, and that I actually had time to both manage and contribute to it.

While time constraints continue to be an issue, I owe a huge debt of gratitude to Andrew Lehman for placing this project in my hands.  Some years ago, somewhere on one of his blogs, he noted that seeing possibilities (such as this one, I presume) and laying the conditions for them to come into being was something for which he seemed to have a talent.  It is a privilege to have been included in such a process.  Thank you, Andrew.

Readers who browse the site by category headings know that some of these categories describe areas which contain few entries, while others are overflowing.  Though it might seem more practical in the short term to modify them, for now these category headings are markers of unfulfilled potential, of attention yet to be paid.

It is not a small thing to absorb or even to entertain the implications of the idea that we live in cyclical time, that out of autism we may have come, and into autism we may be returning.  In the entry which to my mind serves as a keynote for this site, Andrew wrote that “Autism … rights represent the third wave of genetic justice,” following as it does on the movements for civil rights, and for women’s and gay’s rights.  Much of the discussion here recently has centered on this struggle; one of my observations in March was that Shift Journal could serve as a center of gravity for the reflective task of self-definition that underlies such movements.

So this is where a good deal of energy and interested contributors are coming from today; tomorrow or the decade or later after, here or elsewhere, we may see similar energy focused in other areas.  Shift Journal is a big-picture endeavor; we are surveying a large territory, it’s a project not to be wrapped up or even comprehended in the space of a single year.  In this sense Shift is not even so much about the content already available here as the entries yet to come.  Watch this space—or better yet, send along a submission to help shape it.

Back to this notion of returning to autism, I want to direct attention to the ouroboros, the tail-swallowing snake up there in Shift’s masthead.  I’ve never discussed the figure-eight aspect with Andrew; that may or may not simply be artistic license, but the ouroboros itself refers to (among other things) cyclical time.  In the West, we tend to view time as something irrevocable, marching on, in a single unwavering direction.  Rightly or wrongly, we interpret even the tenets of evolutionary theory to imply only progress, so that no one—not even the most staunchly regressive conservative—wishes to go backwards in evolutionary terms.

The concept of evolutionary time entertained here is, again, cyclical rather than linear.  A return to autism—while prevalent biases and preconceptions may say otherwise—is no more a regression or backwards turn than is the return of clock hands to the same positions every twelve hours.  If your sensibilities insist on a vision of progress, imagine a spiral, circling into and plumbing the depths of mysteries.  Given our limited lifespans in the face of evolutionary time, all this remains metaphor in any case.  Even Andrew’s offering of a new evolutionary theory will likely need generations in order for its measure to be taken in scientific terms.

In the meantime, that theory—and this website along with it—provides a framework in which the legitimacy of autistic experience is a given.  We can now set about seeing what we might build on that framework, while also learning to recognize the staggering extent, historically and in everyday life, of what has already been created out of autistic experience.  There’s plenty more as well, as I’ve said, to tuck into—and there’s always an open call for contributors—but even if we don’t get to it all again this year, those tasks alone should be enough to keep us busy.

I sometimes have ocular migraines, which are painless disturbances of vision that last about a half-hour.  The specifics of them differ from one person to another.  Mine looks like a bright flickering band of triangular patterns crossing my field of vision, resembling a rattlesnake in glowing colors.  It’s really quite pretty, although it’s inconvenient because I can’t drive or use the computer until it goes away.  Or to frame it more positively, one might say that it is an enforced break from the things of modern life, an opportunity for quiet reflection.

Once upon a time, in a prehistoric tribal society, it’s likely that I would have believed a rattlesnake spirit was visiting me to teach important lessons about my life.  A shaman probably would have told me that it was magical and that I was blessed.  I would have taken for granted that the rattlesnake really existed because I saw it.  Long ago, people did not differentiate between their subjective experiences and the physical world to the extent they do now.  Traces of this way of thinking can still be found in a modern autistic person’s tendency toward abstract contemplation and love for patterns, as Andrew Lehman wrote in his post Superstition and Obsession:

The way autistics process the world is the way we all thought when we were all group dancers and musicians gesturing our encouragements to the dancing band. The me/every had not differentiated into the me and the other. Story had not yet emerged. Abstract thinking was still so abstract that metaphor had not developed into a thing and what a thing represented. For example, a dancer representing thunder was thunder. The world had not yet broken down into parts. There was only everything, connected, and a compulsion to recognize connection, to acknowledge connection and to reproduce connection.

In many ways, we are fortunate to be living in a world with advanced technology and a more mature understanding of science.  Our homes are more comfortable, food is more easily available, medical professionals can treat many of our ailments, and we live much longer.  Still, I sometimes think that perhaps we’ve gone too far in leaving behind the wonder that our ancestors felt when they looked at natural phenomena they did not understand.  From a factual standpoint, we understand much more about our world, and we’ve created many things they never could have imagined; but we feel less connected to our world, with less of an intuitive sense of where we fit into its patterns.  Science has displaced our childlike capacity to be amazed by life’s mysteries.

Even now, there should be a place in our world for the rattlesnake spirit and its kindred.  Instead of being cast aside as useless relics of primitive times, they ought to live happily and productively on in the realm of imagination—that is, the realm of art, play, and myth.  Even if they are not real in the sense that our ancestors would have understood them to be, they can teach us valuable lessons about our lives nonetheless.

This is not enough.

“But they are so disabled!” is no excuse.

Dis/ability, under the social model, is distinct from impairment—physical or functional limitations.  An impairment is neutral—not seeing infrared has the same value as cortical blindness.  Similarly, under the social model, everyone has the same basic needs—food, oxygen, communication, shelter, livelihood, etc.  How theses needs are met, and whether or not an individual needs them met the same way as anyone else, is irrelevant.

“But they are so impaired!” is no better.

Dis/ability arrises when a person’s impairment is not accommodated by society and/or their needs are not met or are medicalized and stigmatized due to their “atypical” manifestation.  Dis/ability happens when a person is disabled from full participation in society or from having their needs met as a result of society’s response to impairment. Dis/ability means that since you have a different or additional set of impairments compared to the average person, and your needs will have to be met differently, you … don’t get your needs met.  You … don’t get to participate.  You…don’t get to exercise your abilities and participate in society.

“Well then, that’s that.  It’s a physical fact:  they are disabled and so they cannot control their lives!” misses and twists the point entirely.

This is not a physical fact.  There is never any physical reason why an impairment precludes the meeting of needs, the exercise of human rights, and full participation in society.  Can’t hear?  You can still communicate and be communicated with.  It’s just going to look different.  Etc. etc. for every other impairment.  Can’t walk?  There are ways to make the world come to you, and ways to let you go to the rest of the world.  Have trouble comprehending events and problem-solving accordingly?  There are ways to adapt, ways to help with that.  Etc.  Dis/ability arises when society is not willing to adapt to everyone.  It’s not necessarily a social conspiracy—there was never a meeting in which it was announced that all people with one leg were to be feared and hated, for example—but it is a daily reality reinforced in a hundred tiny structural ways.  Dis/ability is buildings with stairs but no ramps, movies without captions, and nonverbal children without access to AAC.  Disability is autistic people whose most significant choice every day is what to eat for breakfast.

There are ways to change this.  Taking accessibility and human rights seriously, for example.   Challenging common ableist rhetoric and practices—ableism is discrimination on basis of ability, and is the mindset which allows people to become disabled as described above.  But even then there is one more piece to the puzzle before we can have equality.  Self-determination.

Self-determination can start as simply as making choices among objects—which cereal to eat, which shirt to wear.  And that’s maybe fine at first for small children, or people who have never been permitted choice before.  But life is more than shirts and cereal.

Self-determination means being able to chose work that is meaningful to you.  It means being able to chose your friends and mates.  It means being able to live outside of a family or institutional home if you want to.  It means being able to learn the things you want, communicate your desires and opinions, control what attention you receive, and go where you want to go.  It means, roughly, being in charge of your life.

It’s a human right within the grasp of everyone.  It’s been made inaccessible to a lot of people.  We won’t have real equality until every autistic can lay claim to it.  Level of impairment is no excuse.  This is Dis/ability 101.  Human rights have been demonstrated to be the foundation from which all dis/ability rights flow.  Self-determination is the crucial next step, and without it human rights cannot be said to truly be honored.  Accessibility makes this possible.  And then, equality is within reach.

A puzzle suggests the idea that there might be some pieces missing.  Of course, such an idea is anathema to me, when applied to any person on the planet.  The only way in which you could look at a person and see pieces missing is if you begin with a preconceived notion of what a person is supposed to look like.  If the person doesn’t fit that preconceived picture in your mind, then you see all kinds of gaps.  But if you see the person for himself or herself, and accept the person as a given, without reference to an outside standard, then the picture becomes whole.  The person is simply a person, on his or her own terms—nothing more and nothing less.

If you begin with an idea of “normal” that says that a person should be able to speak by the age of two like “normal” children, enjoy the same kinds of activities as “normal” adults, and socialize in a “normal” fashion, you’ve got a seriously complex, preconceived image of what it means to be a whole person.  It’s nearly impossible that any atypical person could even begin to approach that image of normal.  When we don’t, some of us are told that we’ve got pieces missing.  Autistic people are told that we lack empathy, theory of mind, central coherence, and the ability to live as social beings—which, by the by, is all complete and utter bullshit, just in case you were wondering.

So who gets to decide what picture is normal?  Other people who have the privilege of defining themselves as normal, that’s who.  It’s a nearly invisible privilege for the most part, because it’s everywhere.  It’s taken me a long time to see it and, ironically enough, I’ve begun to see it by virtue of what is missing from the language of many of the non-autistic people who talk about us.

Two words are missing from the statement “My autistic daughter is such a puzzle”—two little words that would change that sentence from an expression of privilege to an expression of a personal experience.  And those two little words are to me.  If someone were to write, “My daughter is such a puzzle to me,” then we’d be getting somewhere.  All it takes is the inclusion of the personal pronoun.  Of course, there is still that little issue of the puzzle metaphor, which runs the risk of portraying the child as a series of pieces, but at least the source of the fragmented perception would stay where it belongs:  in the eye of the beholder.  The speaker would be taking responsibility for describing his or her own limited perception rather than an objective fact.

Another example of this limited perception appeared on a recent blog by a parent who said that her autistic child is afraid of things “that just aren’t scary.”  She didn’t say “that just aren’t scary to me.”  She said, “that just aren’t scary,” as though there were an objective measure of what’s scary.  These words imply that somewhere in the far reaches of the universe, there is some ideal called scary, we all know what it is and, if we’re scared of things that don’t measure up to that ideal of scary, something is terribly wrong.  Now, I have always assumed that being frightened was a subjective experience, and that an image or a situation that frightened one person might not frighten another.  I have never assumed that what went on in my own mind was exactly the same as what went on in other people’s minds. Far from it.

But wait a minute. I remember reading somewhere that being able to understand that other people think differently than I do is called having Theory of Mind (ToM).  So, miracle of miracles, I actually have ToM, autistic though I am!  And when a non-autistic person can’t imagine why an autistic person might be afraid of something, that non-autistic person seems to lack ToM.  I see evidence that non-autistic people lack ToM regarding autistic people all the time.  In fact, I see it in the work of “experts” on autism, and yet rarely does anyone call them on it.  Usually, the ones who do the calling out are autistic people like me, who by definition don’t understand ToM, so we’re dismissed before we begin.

And once we’re dismissed, people can own the discourse about us and say just about anything they want.  Consider the following:

A non-autistic person says that the world of an autistic person is a puzzle.  That statement is taken as objective truth by most non-autistic people.  In fact, it is irrefutable evidence that the person speaking is “normal” and that the person being spoken of has a “disorder.”  All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Yes, you’re right.  Poor thing.  He certainly is a puzzle!”

An autistic person says that the world of neurotypical people is a puzzle.  That statement is taken as a purely subjective perception by most non-autistic people.  In fact, it is irrefutable evidence that the person speaking has a “disorder” and that the people being spoken of are “normal.”  All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Poor thing.  He’s so impaired.  He just doesn’t understand us.”

Could the arbitrary nature of privilege be any clearer when one set of people has “understanding” when they don’t understand, and the other set of people is “impaired” when they don’t understand?  Maybe it’s that I’m autistic, or a born democrat, or hopelessly addicted to fairness, but I find this kind of imbalance deeply disturbing and painfully unjust.

So what do I do when I meet the puzzle metaphor?  Well, obviously, I write about it.  And yet, the best response to it I’ve seen is a photo on the blog of my friend Elesia Ashkenazy.  I’ve taken her lead and created a sign of my own [see above ].

If you want one, send me a photo by email and tell me what colors you’d like for the top and bottom, and I’ll make you your own sign.  And if you’re comfortable with my publishing it on my blog, let me know.  I’d love to have a post filled with signs like this, but only if people are comfortable with their faces being out there for the world to see.  I do not “out” people, and I never will.

Rachel Cohen-Rottenberg can be reached via the email address available at her blog, Journeys With Autism, where On Puzzles, Privilege and Missing Pronouns first appeared.

Rachel is the author of The Uncharted Path: My Journey with Late-Diagnosed Autism, recently reviewed here.

“Men who leave their mark on the world are very often those who, being gifted and full of nervous power, are at the same time haunted and driven by a dominant idea, and are therefore within a measurable distance of insanity.”

— Sir Francis Galton FRS, English Victorian polymath, anthropologist, eugenicist, tropical explorer, geographer, inventor, meteorologist, proto-geneticist, psychometrician, statistician and racist

According to the Wikipedia Galton’s idea of a link between insanity and genius was based upon his own experience. There has been some speculation regarding Galton and Asperger syndrome, and Galton has also been discussed in the book Obsession:  a history by Lennard Davis.  Sir Francis Galton was a half-cousin of the world-changing biologist Charles Darwin FRS, and I believe one can observe a family physical resemblance between the two men, who had thin lips and heavy brow ridges.  Such masculine facial features are thought to be the result of the action of testosterone on physical development. The leading scientific theory about the cause of autism proposes that the neurological condition is caused by unusually high levels of testosterone influencing prenatal development.  Like his eminent half-cousin, Charles Darwin has been discussed in relation to the autistic spectrum.  Discussion of Darwin as a possible autist can be found in a number of books and articles, including the books Genius genes:  how Asperger talents changed the world by Fitzgerald and O’Brien and Asperger Syndrome – A Gift or a Curse? by Lyons and Fitzgerald.  I’ve got to wonder—if the price of genius is looking like Charles Darwin, are all those smarts really worth it?

These days we understand that being “haunted and driven by a dominant idea” is not insanity, it is autistic obsession, or to use a less loaded term “a special interest.”  Autistic obsession is a powerful force; it can be the fuel behind great achievements of intellect and persistence.  Autistic people are not insane, but it might appear that way at times, with certain individuals.  The difference between madness and eccentricity is an important distinction to make.


More information about Sir Francis Galton FRS.

Lili Marlene’s More Than a Fine Line first appeared on August 18, 2010, at Incorrect Pleasures, and is republished here with permission.  See`also the comments thread on the original post.

Former U.S. Secretary of Labor Robert Reich recently wrote an article, Middle class methodically excluded from prosperity, in which he advocates stronger trade unions and more government spending.  On the other side of the debate, conservatives argue that the free market is naturally self-correcting and that more government involvement is not needed.

I tend to frame the situation as being determined more by technological advances and long-term social changes, which operate independently of the political parties’ maneuverings.  We don’t have to go very far back in history to a time when wealth (which I would define simply as control over stuff) and power (defined as control over people) were functional equivalents.  Wealth/power meant owning large amounts of land, worked by slaves or peasants; often there wasn’t much difference between the two.  Everyone, from the strongest king to the lowliest serf, took for granted that wealth and power belonged only to a few fortunate aristocrats and that this was the natural order of things.

When the Industrial Age got underway, it became possible for the first time to produce large amounts of stuff without having to conquer land and enslave workers.  Factory owners just had to pay enough so that their employees could live better than peasants, which wasn’t hard to do.  They operated what would now be considered deplorable sweatshops with little or no concern for safety and health issues; but no matter how rich they became, they had less power than the rulers of the past because they didn’t own their workers.  Wealth and power were starting to become less closely intertwined.

As technology continued to advance, the railroads and the telegraph made possible much faster travel and communication, which in turn enabled large-scale union organizing.  Once again, the balance shifted; although industry’s leaders continued to become wealthier as new technology made the economy more productive, their control over workers’ lives decreased just as quickly.

Workers gained even more personal empowerment as motor vehicles and the telephone created a society more mobile than any before.  As it became easier for workers to change jobs, companies paid higher wages and offered more benefits to induce them to stay.  Women and minorities had more career opportunities as a booming economy expanded.

It wasn’t long, however, before cheap transportation and computers made it feasible for businesses to set up operations anywhere in the world that had cheaper workers.  The combination of modern-day technology and an ample global supply of job-hungry peasants made corporate profits soar, while American workers’ wages stagnated.  That’s where we are now; and it won’t change much, regardless of which political party has more influence, until there’s enough industrial and commercial development worldwide to drive wages back up.

But at the same time, the Internet, mobile phones, and other inexpensive communication technologies have given individuals an unprecedented degree of personal power.  The wealthy no longer have the ability to control information and manipulate the populace to the extent they once did.  Dictators have fallen all over the world, and others will soon follow them.  Democracy is flourishing robustly in many places where it was never known before.

Ultimately, as industrial growth and a better-educated global workforce bring the era of cheap labor to an end, I expect wages to rocket upward because falling birthrates will result in an ever-shrinking pool of workers, while more jobs will require specific technical expertise.  Employers will no longer have the luxury of treating workers as interchangeable; they’ll have to scramble to find enough qualified personnel to fill all their positions.

Who will benefit the most as the economy changes?  As Mark Stairwalt has mentioned, when technical ability is highly valued, as opposed to social connections or popularity, the coin of the realm becomes respect earned by competent performance.  He characterizes such respect as an autistic ethos.  Of course, that doesn’t mean autistic workers are naturally more competent than others; certainly there are many people of different neurological types who are very good at what they do.  Autistics are, however, more likely to be specialists than generalists; and as such, I expect that as social and economic changes create a surplus of high-paying jobs that are closely matched to individual skills, we can look forward to better times for the autistic population.

One week and the girls return to school.  Okay, one week and a day.  A week from tomorrow.  8 days.  I blinked and the summer was over.  I wonder if it was endless for them?  They had all that time off while I taught from 10 to noon four days a week for 11 weeks. I’d ask them, but can you imagine that conversation?  Lil would immediately say, “Why are you asking?”  This is her stock response anytime you ask her a question.  Rosie would look at me with her huge blue eyes and that’s about all she’d do, just look at me.  Maybe she’d take the conversation to a completely different area, like if I remember next Saturday (her grandma is taking them to McDonalds, so every day is a rehearsal for that).  Maybe she’d just wander off.  Either way, I wouldn’t get an answer to the question, and if I pushed it, I’d have to explain what endless means.  Yeah, that’s an easy concept.  If I simply explained it as a long time, I’d get a duh from both of them.  Geez,  Mom, it’s been twelve weeks; that is a long time.  And so, I won’t ask.  Do you blame me?

Although they are tremendous fun to ask questions to, as long as you are ready for a real answer.  Don’t ask if you’re sensitive.  My kids have taught me to have not a thick skin but a serious case of the funny bone. Their minds work in such interesting ways and they can say the most unexpected of things, make the oddest of connections (but insightful), or completely and utterly miss the boat.  Regardless, if you’re open, it can be completely delightful.

It can also be incredibly frustrating, head-bangingly so, and not for them.  For me.  Especially with my son. Especially when it really matters and I need him to get it.  And he can’t.  Not even close.  And some days are reminders that despite all his improvements, he remains significantly disabled and unable to do most of what other 20 year olds take for granted.  These days, those reminders, the potential dangers and pitfalls, all of these can twist my gut, put it through the wringer, and leave me breathless with almost-weres and very-nearly-weres and could-have-beens.  Close calls, in other words, and we realize that while we must work to giving him as much autonomy as he can handle, that there are inherent risks involved when we stretch, when we loosen our grasp, our oversight, and it hurts almost as bad to pull back, to tighten up, because he doesn’t get it when we explain why things are changing back to an older way of doing things.  It doesn’t matter how simply it’s explained; the cause and effect don’t get through to him, and we are left wondering if it’s been a matter of competence or luck and the very real fear that it’s just been good fortune that nothing adverse had happened prior to the situation that makes us alter our course.

There are people out there that insist that neurodiversity people think autism is only a gift, that it is only a joy.  And I suppose that there are people who actually push for only positives to be told, but I don’t run in those circles, so I don’t know.  I know that there’s a lot of folks defining other people’s positions and being incredibly wrong; they build huge strawmen to tear down in order to build themselves up.  There are people who seem to take autism and make it a box, and any negative, any problem, those things go in the autism box.  Anything good, positive, easy, delightful, that stuff goes in the not-autism box.

It doesn’t work that way.  I guess it makes these people’s lives easier to compartmentalize it that way, and you can see that with only bad in the autism box, it’s incredibly easy for them to say they’d wipe the autism right out of the child and to think it horrendous that we would disagree with them.

So some of us don’t have boxes that sort out and label the deficits as autism and the strengths as not-autism.  We look at our kids and we see our kids, not divisions, not items that can be sorted into laundry lists of get-rid ofs that we label autism.  And here is where one major divide comes up, and it is a false one built up by those who have made those boxes.

Curebies say that neurodiversity proponents want to let our children wallow, that we do nothing to help our children.

This is not, unless the parent is abusive and neglectful, the case, and then it sure isn’t about neurodiversity.  All parents want the same thing:  our children to be healthy, to be happy, to be safe, to have friends, to become independent, self-sufficient adults one day.  All of us.  We all want, with our children with disabilities, and our children with no special needs, for their strengths to get stronger, and for their weaknesses to be lessened.  We want them to overcome their obstacles, all of them, and aim for the sky.

We all want the same thing.  It’s just that some of us label all the bad, the negative, the deficits, the hurt, the pain, the fear as AUTISM.  And some of us don’t.

My children are gifts.  My children are my joy.  They are also, because I am tethered so completely to them, my heart linked to theirs by Spiderman-strong webs, my greatest source of pain.  Not pain for me.  Pain for them, for what they endure, suffer, struggle with.  What happens to them is imprinted on me, and my heart aches on days where their issues cause them pain, put them at risk, scare me breathless.

My children also have challenges.  Some of these challenges won’t be overcome, not naturally, and not with all the hard work in the world.  That doesn’t make them broken.  That doesn’t make them damaged.  It also doesn’t mean I wouldn’t do anything humanly and safely possible to help them find ways to work around those obstacles.

Once you realize that, that we all want the same thing for our kids, you can’t pretend that there’s a real divide.  You can, though, sit up and take notice at who refuses to look at the reality and who continues to push these lies.  And you can hold them accountable because it shows beyond a shadow of a doubt that it isn’t about their kids, about our kids, about making the world a better place.

KWombles’ On a Countdown and Deeeper Thoughts on the Autism Box People Make first appeared at Countering … and is republished here with permission.

The first thing I remember is Morris expressing disbelief that some Lifeskills kids up at the high school were learning about electrons and atoms and all that, and me trying to explain that actually, I got Brandon understanding different types of circuits and how they work.  He might not remember it the next day, but he got it.

I remember, junior year, when I first started working in Lifeskills at the high school, realizing that the way people think of the intellectually disabled–as “slow”–was profoundly incorrect.  I remember saying to someone “It’s not that they’re slow.  It’s that whole steps are missing.” It was my first realization that the conventional thinking on intelligence was badly misguided.

In Child Development last semester, we talked a lot about intelligence being a measure of adaptivity and cognitive skills.

I’m sorry, these are a lot of random thoughts which appear, at first glance, to be disconnected.  But they’re all elements of my hypothesis, and I’d like to lay them all out at once before I start in.

Cognitive skills are things like working memory, memorization ability, processing speed, meta-cognition, decentration, classification, etc.  They are the tools you use to think with.  And I guess that it’s bewildering to some, but Peter and Daniel–both functionally nonverbal, very poor language even with AAC devices, both with virtually no expressive reading comprehension, both doing some work far below grade level–in other words, both labeled Intellectually Disabled–have absolutely amazing cognitive skills.  When they aren’t being asked to talk, they are as fast as any AP Calculus student I’ve met–faster, even.

How can a boy who can’t reliably answer a wh- question about a paragraph he just read complete Punnet squares, page through a device so fast that it shuts down, or just generally be so smart?

Some people describe Autistic intelligence as splintered, for precisely the reasons I’m outlining here.  Along with an amazing set of cognitive skills is a complete lack of executive function, a disabling absence of adaptive behavior, and language skills so poor that the composition of a simple sentence, let alone answering one, is virtually impossible at this time.

Peter and Daniel are bright.  They are also profoundly disabled, maybe even Intellectually Disabled.

Does the mind rebel at the idea of labeling these boys as such?  After all, they’re so smart!  They don’t fit the stereotypical box of Intellectual Disability.

So the problem lies with our box.

The fact is, intelligence is complicated, multi-factorial, ill-defined, and above all, fluid.  Take, for example, Aiden.  Last year, he was for all intents and purposes non-lingual–apparently completely oblivious to any form of language directed at him.  But last Monday, I watched as he sat at a computer and matched sentence after sentence spoken aloud to one of three pictures provided.  And then I watched as, seated at a table with an array of objects laid out in front of him, he responded to the query “what do you comb your hair with?” by selecting a comb.  He can even use a modified pictorial-exchange system to communicate what toy he would like to play with.

He is still the same Aiden who doesn’t understand that if you put an open drink container in your lunch box it will fall over and spill.  I don’t know how to account for his breakthroughs?  Did he finally make some connection that allowed him to understand that pictures symbolize objects and that the shapes within them are meaningful, not just patterns of color?  Did he manage to break through a wall that was keeping him from coordinating his behavior and his understanding?  Did he finally just start looking at the options provided and considering them, rather than always picking the one on the right?

I don’t know.  I just know that three words have been falling out of my mouth this past week more than they ever have before:  “You’re so smart!”.

But how intelligent can you be, really, when you cannot adapt–when you’ll be flummoxed if I hide your toothpaste, or if, when cooking, you run out of flour?  You can’t live independently if you can’t adapt at all when things differ from the procedure you’ve been taught, and can you be considered intelligent if you cannot assimilate and accommodate basic new information or slightly different circumstances?  Cognitive skills are great, but if you’re getting stuck in a useless rut all the time, they won’t be of any help.

I’m not convinced that lacking language is the cruel blow it’s often thought of, and there will be more on that later. But being nonadaptive?  That’s a huge problem.  That can threaten your survival in a unique and basic way.  And the more I work with the Intellectually Disabled, the more I am convinced that the AAIDD is on the right track, defining adaptive behavior as the main concern when measuring and accommodating Intellectual Disability.

Cognitive Skills, Language Skills, and Adaptivity are all intertwined but separate components of intelligence. The only common thing from one ID person to another is the lack of adaptivity.  Shana has average language, moderately poor cognitive skills, and moderately poor adaptivity.  Daniel has poor language, excellent cognitive skills, and I don’t know about his adaptivity.  The point is…

The point I’m trying to make is…

We’re all more alike than different.

People have this picture in their minds of the Intellectually Disabled as confused aliens, when nothing could be further from the truth.  Their cognitive structures may not have a piece or two that yours does; it might not be as flexible; but in the end their is, no matter how profound the disability, an intact cognitive structure.  And it is still capable of impressive feats.

And so, I ask you:  why can’t Peter be intelligent?  Why should that come as a surprise?  Capable of living independently: probably not.  So what?  That doesn’t mean his mind is a void.  It means that it works very differently, that there is some impairment.  It doesn’t mean that it is uniform, a tragedy, nonexistant.  Ability is, if nothing else, fluid.  Mental abilites are the same way.

More and more, I am coming to the conclusion that intelligence is too ill-defined to be meaningful.  Because Peter and Daniel are smart, regardless of which program they are in at school.  Compared to them, some neurotypicals are absolute idiots.  It is more useful, more accurate, to talk about adaptivity and cognitive skills and language ability, which together comprise cognitive or intellectual ability.  It is important, too, as we shift our discussion, to recognize that abilities can be uneven and dissociated, regardless as to whether or not this is typical.

And above all:  we must not underestimate.  We must not let looks deceive us.  We must remember that no human is truly non-communicative, non-cognitive, or non-adaptable.  We must change the conversation such that the closer you get to such a state, it is no longer true that the less likely you are to be thought of as human, let alone intelligent.

Intelligence, if it means anything to me, is a light, a brightness behind someone’s eyes, a spark thrown off by the working gears of their mind.  And to say that someone lacks this essential human trait because they have a disability?

Is morally repugnant to me.

Julia Bascom’s On Intelligence, Perhaps first appeared on her now-defunct blog, and is resurrected here with permission.  Julia is currently also blogging at flashback dream sequence.

Girl finds boy, girl gets boy, girl loses boy.  So go the first three-quarters of the tale of mortal Psyche and the immortal Cupid.  At this point in the story the gods have made clear to both Venus and Psyche that they must come to terms with one another.  Venus of course has had it in for Psyche all along because Psyche’s beauty is a bit too much of a threat for the goddess.  And now on top of this Psyche is pregnant by none other than Venus’ own son, thus threatening to make the goddess of beauty a grandmother.  The above paragraph, taken from Josephine Preston Peabody’s 1897 retelling, describes the first of four tasks the furious Venus assigns to Psyche as she seeks to be reunited with Cupid.

It is, of course, a sorting task.

Here is Tyler Cowen again, from the now-renamed The Age of the Infovore:

One strong feature of autism is the tendency of autistics to impose additional structure on information by the acts of arranging, organizing, classifying, collecting, memorizing, categorizing, and listing.  Autistics are information lovers to an extreme degree and they are the people who engage with information most passionately.

We love to sort.

Or I do, at any rate.  I’m away from home tonight, or the image above would be of the shelf in my office where I have a row of neatly stacked plastic boxes, each with a printed label bearing the name of one or another category of computer peripheral, cable, cord, or other tiny-ish pieces of hardware.  I am most proud of, and inordinately amused by the label on the box of miscellaneous bluetooth paraphernalia, which reads Blueteeth.

Other parts of the office have been in a state of partially sorted disorganization for months.  It’s almost as if I need to know I have sorting to be done, as much as I need to have it done.  My computer hard drives mirror the state of my office, though as they collect clutter more quickly, they tend to get the lion’s share of sorting attention—especially as the office itself completely disappears from my awareness when I am clicking through drives and folders, whereas both computers are always beckoning even when my back is to them.

I’ve been thinking today though about the shape of the satisfaction that grows and clarifies itself as you apply yourself relentlessly to a sorting task, the way things feel as the tags and categories get set and the loose ends find their places.  I’m not synaesthetic, not much or typically anyway, but I do feel that I can almost touch and see the sense of satisfaction I get from sorting, just by thinking about it.

On the other hand, if I could hear that building sense of satisfaction just by thinking about it, I was pleased and surprised today to find that it does seem to sound much like this …

… which turned up today (now yesterday) at the inestimable Boing Boing.  I’ve just been looping it in my free moments ever since.  Yes, obsessively.

Oh, and Psyche?  She got her man back, and became immortal.  And made Venus a proud grandmother.

A daughter, Pleasure.

My children want you to know that being socially awkward doesn’t mean they cannot be wonderful, kind, loving and loyal friends.

My children want you to know that they stim because they need to, not because they are brats with little self-control who wish to irritate you.

My children want you to know that they are not “picky”, “wussy” or “incorrigible” because they cannot tolerate certain lights, sounds, fabrics or foods.  They experience the world quite differently than you do from a sensory standpoint, and they are doing their best to process and handle all of it.  Think of having the volume turned up on every one of your senses at all times.

My children want you to know that they do not lack self-control.  They require ten times as much self-control as most children because their environment is more distracting and abrasive than you might be able to imagine.

My children want you to know that humiliation as a tactic to get them to behave more typically does not work, and will simply make them fearful, ashamed and unwilling to trust people in the future.

My children want you to know that they interpret their world very literally, so they may not understand metaphor and figures of speech and interpret them as a literal statement.  This does not mean they are stupid, it just means they think differently than you do.

My children want you to know that they are not rude or mean, they are just very honest about how they perceive the world and do not filter their responses for the sake of politeness.  This is not a choice, they simply think in pure logic when evaluating their environment and ask questions about what they see, hear or experience.  They do not wish to offend anyone.

My children want you to know that there is a difference between a temper tantrum and an autistic meltdown.  While both may look extremely similar (to the point mom and dad might have trouble discerning the difference) the cause of each is quite different, and so is the solution.  Discipline will not fix a meltdown.  Unkind words about our “poor parenting” and telling us that a good spanking is in order will not yield a positive result.  When an autistic child is experiencing a meltdown, they need the offending presence to be removed.  This usually means moving to a quiet place, being held close (my son) or being given some space (my daughter) to be able to find equilibrium again.  If my son decides to sit barefoot in his stroller in the mall during winter, deal with it.  If my daughter wants to hum and walk on her toes in the mall, likewise, deal with it.  Dealing with it is exactly what they are doing.

My children want you to know that they are not sad because they do not experience the world in the way you do.  Their experience is all they know and they find it quite normal.  What they struggle with is when people question and criticize their view of the world and say that it is defective or wrong.  How would you like it if someone told you you were wrong for the way you experienced the world around you, or tried to force you to see it and react to it their way?

My children have autism.  They also have hopes, dreams, goals, talents, creativity, love, kindness, compassion, a sense of humor, intelligence, interests, personalities, wishes, and people who love them very much for exactly who they are.  My children want you to know that they are valuable, lovable, precious individuals who have so much to offer this world, if only you will see them for who they are.

Static Mama’s My Children Want You To Know first appeared at Static Vox, and is republished here with permission.

Reporting from Satire City, USA, August 2110

Advocates of inclusive eating celebrated a success today when the President signed into law the Inclusion of Disordered Eaters Act, which will provide federal funding to integrate Americans with eating disabilities into the mainstream of society.  The legislation’s proponents say that it is much needed in light of today’s mysterious epidemic of Eating Spectrum Disorder (ESD), a major public health crisis.

A century ago, when ESD was wholly unknown, policymakers became concerned about rising obesity rates.  They also found it troubling that some people were not eating enough because of poverty, fad diets, anorexia, and other issues.  Taking as their model the venerable American compulsory education system, they set up State Boards of Eating, tasked with ensuring that all citizens would receive free and adequate nutrition.

After numerous studies by state-funded commissions, America’s eating experts reached a consensus: Thai food was the healthiest.  Counties imposed new property taxes to build and staff Thai restaurants where carefully measured portions would be served free of charge.  Although privately operated restaurants and home cooking were not banned, every cook now had to comply with detailed state regulations governing the preparation of Thai food.

Most people agreed that compulsory eating was a great success.  Under the new system, nobody ever went hungry for lack of money, and obesity soon disappeared along with soda pop and potato chips.  On average, the American population became much healthier now that they were no longer free to make bad food choices.  Although the economy took a hit when producers of non-Thai foods had to go out of business or change their operations to produce only state-approved food items, the corporations were robust enough to recover eventually.

By then, another problem was starting to become apparent: not everyone could eat Thai food without difficulty.  Indeed, peanut allergy made it life-threatening for a small number of people.  Others who had unusually sensitive stomachs found the spices quite indigestible.  And there were some who, for reasons unknown, took a great dislike to either the taste or the texture.

Because the county-owned restaurants were designed to serve large crowds efficiently and at low cost, those who asked for individual accommodations in their meal preparation had little success with their requests.  As a result, they often ended up eating all their meals in the isolation of their homes, where they could privately cook their food in ways that they found more palatable.  Sometimes they had to dodge zealous compulsory eating officials who demanded that they cease and desist from violating state requirements.  Their neighbors were likely to taunt and shun them because of their odd antisocial behavior in avoiding the restaurants, and employers were reluctant to hire them.

Not surprisingly, under these circumstances, parents found it quite alarming when a young child began to show signs of picky eating.  Urged on by early-awareness campaigns, many parents rushed their little ones to psychiatric experts who had created a new diagnostic category, Eating Spectrum Disorder, defined in terms of behavioral criteria such as picking the peanuts out of one’s Pad Thai or surreptitiously wrapping hot pepper chunks in one’s napkin.  The experts cited gloomy statistics on how many adult ESD sufferers were unemployed, still dependent on their parents, and bereft of friends and romantic relationships.

Although no cure existed for the tragic affliction of ESD, the experts somberly declared, it was possible to ameliorate the symptoms by way of intensive behavioral intervention.  The most widely used program, Applied Eating Analysis, consisted of repeatedly giving a child small portions of the various state-approved foods while keeping careful records of the child’s behavior on each occasion.  Even children with the worst allergies and picky eating habits, its practitioners claimed, could one day be indistinguishable from their peers once they became habituated to eating proper foods.

Popular news reports cited cost estimates of the huge burden that was projected to result from the ever-growing number of diagnosed ESD patients, most of whom surely would have a dismal future if more efforts were not made to integrate them into society.  It was against this backdrop of urgency that inclusive eating legislation was passed to ensure all ESD children would have access to the therapies and accommodations needed to enable them to eat in the public restaurants with their nutri-typical neighbors.

“This is a huge victory,” said leading ESD advocate Willa Bobbalot, founder of the National Association for Normality in Eating, whose two grandchildren both have been diagnosed with the disorder.  She added, “Of course, we’re all still working toward that wonderful day when we find the cure to make them eat just like everyone else.”

When I read the first article, I thought I’d entirely put my finger on the problem.  The writer, a non-autistic mother of two autistic boys, had only negative things to say about autism, and it seemed clear to me that she was saying that her children were more than a collection of negatives.  I don’t accept that autism is an entirely negative condition, so I attempted to argue with her on that basis.  I didn’t get very far, mainly because the writer kept asserting that her children were human beings, not just autistic human beings, which pretty much ended the discussion.  After all, who is going to argue with the inherent humanity of any person?  I didn’t see anywhere to go, even though something still felt very wrong to me.

Then, yesterday, I read another article, this time by someone on the spectrum who has two children on the spectrum.  She, too, asserted that her children are “more than their autism.”  Her view of autism is not entirely negative, and so I had a much easier time reading and thinking about what she had to say.  And yet, the assertion still bothered me.  To try to get at why, I decided to apply the question to myself:  Am I more than my autism?

That’s when I began to understand the problem.

The term autism is itself very problematic.  I agree with Amanda Baggs when she says that there is no such thing as autism, and that there are only autistic people.  I don’t feel that autism has an existence separate from me in any kind of quantifiable, objective way.  In fact, I’m coming to feel that the word autism is simply a social construct.  After all, if it’s all about behaviors, with some behaviors considered impairments, how can it not be a social construct?  In some cultures, making eye contact, especially for long periods of time, is considered rude.  In some cultures, it’s perfectly acceptable to rock back and forth on a regular basis.  After all, observant Jews pray three times a day, and rocking back and forth constantly is part of the ritual.  We’ve been doing it for centuries.  And yes, some people find it very strange, but their experience of us is a cultural judgment, not evidence of an objective reality.

Even if you move toward describing autism in terms of subjective experience rather than externally verifiable behaviors, it’s still difficult to escape the social implications of what happens to our descriptions of our own experience.  I can describe my difficulties with noise, my inability to filter sound, my extreme sensitivity to the energy of other people, and yet, if I take those together and make them part of the definition of something called autism, I’m moving them from the realm of autistic experience into the realm of a category—a category in which my experience can be broken down into a list, in which it can be medicalized, in which other people can become “experts.”  That’s a realm that the culture constructs constantly and values excessively.

So the very idea of using the word autism as though it is separate from my personal, subjective, daily reality is very fraught.  I didn’t feel that way when I named my blog Journeys with Autism, but I feel that way now.  (And no, I’m not changing the name of my blog again, because if I changed it every time I had a new realization, I’d drive everyone nuts.)

But there is something more about the question “Am I more than my autism?” that is very troubling.  Or perhaps it’s the expected answer that’s troubling—the expected answer being “Yes, I am more than my autism.  I am a human being.  Autism is just a part of whom I am.”  This answer is very problematic, for a number of reasons, not the least of which is that it threatens to divide me up into component parts:  part autistic, part Jewish, part female, part this, part that.  I don’t feel like a series of component parts.  Everything I am is completely me:  I am entirely autistic, entirely Jewish, and entirely female.  If you split one of those things off, I wouldn’t be myself anymore.  You can’t take away my Jewishness and think that you will recognize me.  You can’t take away my being a woman and end up with a complete human being.  And you can’t take away my being autistic and think that I will continue to exist, any more than you can take away all my veins and capillaries and arteries and think that my heart will continue to circulate blood throughout my body.

Even more important, though, is that my humanity is implicit in my being a woman, in my being Jewish, in my being autistic.  After all, am I more than a woman?  Is my husband more than a man?  To say yes, we are both human beings, is to miss the point entirely.  Being a woman automatically means that I am a human being.  Being Jewish automatically means that I am a human being.  Being autistic automatically means that I am a human being.  Being female, and Jewish, and autistic, are not component parts of being human, nor is being human somehow above and beyond them.  Being human saturates them.  Being human is what makes being female, and Jewish, and autistic worth the effort.

And make no mistake:  being a woman and being Jewish are not easy, any more than being autistic is easy.  Being a woman and being Jewish are not entirely positive experiences, any more than being autistic is an entirely positive experience.  For some reason, it’s easier to speak of the mixed experience of gender and ethnicity than the mixed experience of being autistic, at least in this day and age.  No one but a misogynist would deny that being a woman is a wonderful experience in some times and places, and a horrendous one in others.  No one but a dyed-in-the-wool anti-Semite would deny that being Jewish can be extremely joyous and extremely difficult, depending on circumstances, and often at the same time.  But there are days in which I’m hard pressed to find anyone saying anything positive about being autistic, as though being autistic were in some other sort of category, as though the usual paradoxes of being human don’t apply.

Many, many people don’t really see being autistic as being fully human, and in that blindness lies the problematic basis of the original question.  When people say that their children are more than their autism, I think what they’re reacting against (and rightly so) is the pernicious idea that somehow being autistic and being human are mutually exclusive.  And yet, at the same time, they run the risk of playing into this idea by asserting that there is something more than being autistic, and that is to be human.  I’m not saying that the risk of separating the categories autism and human always results in the two becoming mutually exclusive, but it sets up a dichotomy that can easily reinforce the prejudices of a great many people.

When you come down to it, perhaps what parents are really saying is that their children are more than the stigma of the word autism.  They are more than a medical diagnosis.  They are more than the cultural refusal to celebrate them.  They are more than the daily reminders that there is a construct called “normal” in which life is supposed to be easy and they don’t fit.

I have no argument with any of that.

But I’m not going to answer the question “Am I more than my autism?” because I do not accept its premises or its implications.

I am an autistic person, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that non-autistic people do not.  I am a woman, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that men do not.  I am Jewish, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that non-Jewish people do not.  I am thankful for my life, whether or not it’s painful, whether or not it’s easy, and whether or not it measures up to the dreams I once had for myself or that other people had for me.

A dream is only a starting place.  Life is where the action is.

Rachel Cohen-Rottenberg’s Am I More Than My Autism? I Refuse to Answer the Question first appeared at Journeys With Autism and is republished here with permission.

Rachel Cohen-Rottenberg’s recently published book is The Uncharted Path: My Journey with Late-Diagnosed Autism.

Human rights have been variously defined, and include rights many take for granted, such as:

• communication
• self-determination
• food, shelter, and necessary medical care
• dignity
• freedom from torture
• existence
• etc.

Current human-rights violations against autistics happen because of a fundamental belief that an autistic

• is not a proper, fully functional human
• and therefore
• has no right to exist as an autist.

There would be no JRC if no one thought of autistic children as unmanageable and needing to be saved from themselves—or everyone else as needing to be saved from them.  Autistic people would not be regularly murdered if societal attitudes and ableism did not reinforce a crazed guardian’s thought that their autism made them an unbearable burden, robbed the autist of the possibility of a happy or meaningful life, or stripped them of some essential human property.

Dis/ability theory and rights rest on the assumption that human rights, experiences, and qualities are not restricted to the enabled, but apply equally to everyone.  Thus, talk of accessibility is grounded in the belief that human rights and everyday experiences are not privileges to be denied to those with dis/abilities, and that the dis/abled do not deserve to be marginalized.  Talk of self-determination is based on the assumption that every human has thoughts and preferences and desires, that every human can communicate these, and that those who do so in atypical ways still deserve a voice over how their lives are run.

The thought and discussion concerning virtually every other dis/ability takes these ideas for granted.

These are all expressions of a concept of equality—both as a goal and as a starting state.  As a goal, equality can be roughly translated as political, economic, and social competitiveness, while equality as a starting state means that a dis/abled person has a right to their mind and body as is—that difference is not the same as deficit, that people with abnormal or less-functional bodies and brains do not need to earn human rights by physically altering their natural state and can be happy, adaptive, and successful with their natural and particular set of impairments. From start to finish, a dis/abled person is equal.

The two ideas intersect, reinforce, and naturally lead to each other, and are absolutely essential to any discussion of autism.  It changes the question from how can we make someone nonautistic—resting on the assumption that an autistic life is not worth having—to how can we make autistic life better, autistic communication easier, etc., for an autistic person?  How can we enable an autistic person to successfully compete politically, economically,, and socially as an autistic? This is an important distinction, and without it human rights abuses of autistics will continue, as there will be no reason to conclude that autistics posses certain unalienable human rights as autistics.

Before life can be made better for autistic people, before autistic people can contribute and belong to society as autists, before autistics can be sure of basic human rights and self determination, before the world will be a more accessible place for those with autism spectrum conditions, the belief that autistic people have a right to be autistic must be made mainstream.  A page from the book of the rest of the dis/ability community needs to be taken.

It needs to be loudly, clearly, and repeatedly said by a community united:  autism is natural variation, autists are fully functional humans, and anything short of equality, be it a desire to cure, a deficit-based model of autism rather than a model based on neurological variations and a unique profile of strengths, weaknesses, and preferences, or out-and-out physical human rights violations, is unacceptable.  Neurodiversity, as a philosophy and as a checkered self-advocacy movement, is devoted to making this truth inescapable, and in so doing improve the lives of autists everywhere.

This is something that was first brought home to me as a young person, while attending a summer jazz workshop run by one Jamey Aebersold.  Years before anyone thought to market anything so deliciously self-conscious as a “fantasy rock and roll camp,” Aebersold was hosting real jazz camps, a week at a time, for small group or big band, for ages 14 to adults.  By real jazz camps, I mean very few of us in attendance needed to be marketed to in order to get us there, nor did we have many illusions or starry-eyed dreams about what we were there for.

Aebersold was also, in one of the great non-musical jazz traditions, a sly and impish put-on artist.  While he came by his Kentucky drawl honestly, he used to love to stand up in front of an auditorium with that drawl in overdrive, talking about the necessity of mastering the relationships between “skiles and cards” (scales and chords).  The takeaway was that even a (supposedly) backwards hick and unlikely but consummate jazz geek like him could become competent as a player, or more to the point, that any of us as well could earn the respect of our peers and our betters.  The effect was to even the playing field; while there were inevitably a few attendees who seemed “cooler” than the rest of us, their coolness paled in relevance to the actual work at hand, and it might well be lost altogether if they couldn’t actually play.

Jamey Aebersold’s instrument was alto saxophone, but he typically didn’t take part in the evening faculty concerts.  The one year I remember that he did, he announced that he would cover the Jimmy Van Heusen standard It Could Happen to You, drawing scattered laughter with the afterthought, “That’s what prisoners say.”  And then he launched into what slowly built to an intense, blistering tour-de-force of technique and passion that turned up the electricity in that hall to an almost uncomfortable level, raising hairs on end and taking most of us by complete surprise.  It ended with a standing ovation, not just because of the performance itself, but because of the incongruity of performer and performance.  The mouse had roared, and we had gotten the message loud and clear:  if that socially awkward, beak-nosed 40 year-old nerd up there could do that, why, so could the rest of us.  That night especially, we respected the hell out of Jamey Aebersold.

A few months ago I wrote about an autistic ethos as exemplified in Information Technology (IT) circles, and I’m going on at some length here about the Aebersold workshops because they too exemplified this ethos. The coin of the realm in “real” jazz circles, as in IT, is respect, respect awarded on the basis of sheer competence—not the ability to maintain a stage presence, work a crowd, put on a good show, or even to sell records (need I point out the similarities to the social demands heedlessly placed on autistics?).  I’m not naming any of the faculty because I don’t expect their names would have any meaning here (though Tom Harrell would be an instructive example), but they always seemed to be the pick of the crop; always a few notable, world-class names but without fail they were musician’s musicians, the sorts who were regularly hired by notable names.  Whether they were working and recording or had retired to the security of a university position, they were above all players who had the respect of their peers.

So.  The first year I went, sometime in the late 1970’s, there was a question-and-answer session.  Someone stood up and began speaking earnestly about the consistently poor choices that were nominated and voted on in the Playboy Jazz Poll, and what could be done about it?  Maybe half of us there were underage males, so there was immediately a certain tension in the air at the mere mention of Playboy—not to mention at the naivety of anyone who would take the Playboy Poll seriously in the first place.

While it may have been somewhat relevant in the 1950’s or early 1960’s, by the late 1970’s it was clear that the sort of people who took Playboy seriously had by and large been left behind by the musicians themselves. By then what the poll measured was which jazz artists were being marketed effectively, and there was a wide gap between them and the ones who had that bond of mutual respect, that shared autistic ethos.

Whoever it was who replied knew just how to break the tension—and how to answer the question fully and completely in just a very few words.  Before the Playboy situation would get better, he offered with a dismissive shrug, and I quote, “… a lot of people will have to die.”  The room exploded in laughter, and we moved on to the next question—but what remained was a feeling of collegial well-being, that we were all in the right place, with the right people, with the right priorities.

I’m happy to report that here in 2010, Google can not seem to even identify for me the year in which the Playboy Jazz Poll finally went away.  And my wife’s old flame Kurt, a sometime jazz promoter in NYC, has assured me that the scene remains alive and well, regardless.

All of which is not to suggest that we be ugly with our wishes, or even that we should make a point of keeping a bottle of whiskey on hand so that we may run it through our kidneys before dribbling it over the grave of this or that recently departed nemesis.  It is to remind that advancing the values of neurodiversity is a long-term, multi-generational project, and that as such, it’s more about winning the hearts and minds of those who aren’t even paying attention yet than it is about keeping up the battle against detractors.

I had a quick pang of panic and regret here as I realized I haven’t left much room for suggesting what I do think ought to be done, but the fact is I’ve already described it.  As a well-run IT department does, or as the jazz camps I attended did, what needs to be done is to demonstrate mutual respect based on those things which matter to us. We need to exemplify an autistic ethos by busying ourselves with what we deem important, be it switching all the servers over to Linux with a minimum of fuss, interference, and downtime; ignoring our smug, guitar-playing pals with their cultish reliance on playing by ear alone, and instead—yes, obsessively—learning our skiles and cards upside down and inside out; or be it building out and realizing an autistic culture that knows its own worth, with or without outside validation.

As necessary as it can be to engage in conflict with others—when non-consenting autistics are subjected to dangerous or nonsensical treatments, or when the legitimacy of autistics generally is actively and actually being undermined—it’s worthwhile to keep in mind that much of what’s out there in the way of opinion and viewpoint amounts to little more than autism’s version of the Playboy Jazz Poll:  it’s nothing with which we need occupy ourselves.  Caitlin Wray’s essay from yesterday is a good example of this approach; she’s simply moving forward, neither waiting for nor demanding consent from those who would prefer her life and her son be invisible.

Whatever space we’re going to occupy with our minds, it ought to be space that is attractive to younger minds and to minds yet unborn, and more immediately, to those who are newcomers to autism blogs.  Making it attractive, as Caitlin does, should be our business.  Add time, and patience, to such a space, and I think there’s reason to believe it’s going to prevail as the place to be.  The inexorable fact is that people who will never change their minds will nonetheless die. In the long game they are irrelevant; their best hope is to bait us into playing the short game, into making them seem relevant by throwing our energy at them, wasting it in worry and agitation.  Even a many-headed Hydra though, if neglected long enough, will grow old and die.

Time is an ally here, if we allow it to step in and do what time does.

Both of us having two young kids, we had a casual chat on the lawn the other day as neighbours often do, about the usual stuff.  Except of course, the “usual stuff” for parents like us will strike others as highly unusual.  It’s hard to make small talk about our kids without autism finding its way into the conversation.  It used to make me uncomfortable; it can be awkward to find succinct ways to weave such a complex situation into an informal chat.  But I no longer let society’s discomfort with autism deter me from talking about “it,” because “it” is part of who my son is, and indeed has become part of who I am.  If my neighbour gets to talk about her daughter’s ballet class, then damn it all, I get to talk about my son’s karate class—and how it has helped him with the more challenging aspects of Aspergers.

I must have hit at least three occasions in our conversation where I tried to say “autism” but she saw it coming, and cut me off at every pass.  She replaced it with “I see.”  Where I said “I’ve been homeschooling because the school wasn’t prepared to work with Simon’s au-,” “I see, I see,” she interjected hastily.  She also replaced it with “oh yeah” as in “We don’t feel Simon needs to be cured of his au-” “Oh yeah, yeah” she interrupted me nervously.  Awkward silences and fidgeting ensued.

I’ve read many opinions on who should be told about your child’s autism, and how you should tell them.  I’ve seen a range of positions from experts, parents, and autists.  The prevailing wisdom, including from many of the people I most admire, is that you should be choosy and cautious about who you tell, discreet in how you share the information, and that your child should have some level of control (some say all the control) over who is told.  Generally, this position comes from a place of concern and respect for a child’s right to privacy.

This made good sense to me initially.  It sounds just like the middle-of-the-road liberal approach I would normally embrace.

But I am finding myself, with each passing day, becoming more radical in my beliefs about the need for complete transparency with an autism diagnosis.  The need for respect, awareness, acceptance, and pride.  And I just can’t see our kids getting respect, awareness, acceptance, and pride from a society that can’t bring itself to say “autism.”

Recently, I was in a forum where a mother spoke of how she hoped she would never have to tell anyone her son was autistic.  Like me, she felt her son may go on to be so high functioning that no one would ever need to know.  And she didn’t want to tell people now, only to regret it later because an autism diagnosis is “not the sort of thing people forget.”

Doesn’t that phrase “not the sort of thing people forget” sound dirty?  Wrong?  Something so distasteful it will forever stain the memories of those who hear it?  It’s in the same category as not telling people you’re an alcoholic because they may never see you drink, or not telling anyone you’re a pedophile because you’re not going to work with children.

I can’t abide that definition of autism, but I really do understand where she’s coming from.  Recently I was torn about a decision involving my son’s old school buddies, and how they don’t know he’s autistic.  I struggled with the question:  do I really want them to?  We don’t want our children stigmatized by the label.  We don’t want them to be crucified on a daily basis, or limited in their future, because of that word, “autism.”  None of us want those things for our children.

But here’s the thing:  until enough of us stand up and say “my child is autistic” or “my child has autism” and say it wrapped in a context replete with love, respect, and adoration, and devoid of shame, sorrow, or fear—until enough of us find the courage to be at the forefront of that movement, then we sentence our children—all of our children—to exactly that which we fear most: isolation, marginalization, stigma.  We foster it with our own fear.  We perpetuate the cycle because we are not courageous enough to break it.

Yes, the risks with transparency are real.  By “outing” your child you risk a label that currently carries a ton of baggage.  You may have more battles—or you may have fewer.  Your child may benefit from the services they receive—or they may face ostracism from the stigma of the label that brings those services.

Nothing is certain except this one, unavoidable truth:  society will only stop fearing autism when we do.  It will only stop stigmatizing our children when we wield a sword of awareness against that stigma.  How can we expect society to recognize and respect our children’s autistic differences when so many of us are still in the closet about them?

Every misunderstood, marginalized, oppressed group of people throughout history has faced this same challenge.  Stereotypes, fear, and pity suffocated them, demoralized them.  The reality is that nothing changes, until enough people join the rebellion.  And for those at the forefront of the movement, they risk losing the security of their child’s relative neurological anonymity, in order to secure a better future for our children collectively.

Ultimately, society cannot free our children from a cage of stigma.  Only we can do that.  We need to reject the “don’t ask, don’t tell” approach and foster a movement that shifts autism into the mainstream.  And the only real way to do that—to achieve complete equality, complete awareness, and complete respect for our kids—is to be brave enough to say “autism” without the slightest hint of regret in our voice.

We need to say it first.  We need to say it loud.  We need to say it often.

It’s the only way.

Caitlin Wray’s Be the Change: How to Shift Autism into the Mainstream appeared recently at The Thinking Person’s Guide to Autism.  Caitlin blogs at Welcome to Normal, Population: 0.

]]> http://www.shiftjournal.com/2010/08/12/be-the-change-how-to-shift-autism-into-the-mainstream/feed/ 7 http://www.shiftjournal.com/2010/08/11/taking-flight/ http://www.shiftjournal.com/2010/08/11/taking-flight/#comments Wed, 11 Aug 2010 05:27:57 +0000 Gwen McKay http://www.shiftjournal.com/?p=2939 My daughter, who isn’t likely to get the GMC Terrain she’s been obsessing about because my husband has decided he wants to buy a Chevy Volt and save the planet, is now a college freshman.  She moved into her dorm room on Sunday afternoon, arriving about fifteen minutes before her roommate, which gave her dibs on the side nearest the window.  That was a matter of great importance, it seems, because the dorm is an old brick building with very poor cell phone reception.

After she got unpacked enough to move around a little, the first thing she did was to walk all around the room with her phone until she found the spot with the strongest signal.  The second thing was to set up Skype on her laptop so that she could spend most of the night chatting with her friends.  The third thing was to go out and buy a webcam for those chats.  Unpacking the rest of her stuff was a distant fourth.  I suspect she just threw her comforter on top of her bunk, rather than bothering to make the bed properly.

Back home in my astoundingly quiet empty nest, I’ve been reflecting on the vast amount of neurological diversity that exists unrecognized, a topic raised by Julia Bascom in her Monday post Goodness of Fit.  She described how the DSM concept of the autism spectrum includes many different neurological subtypes, none of which ought to be in a manual of mental disorders:

Autism is a neurotype.  So why is it in the DSM?  The DSM is for mental illness and disorders, not cognitive, neurological types.  Autism doesn’t belong…

The answer to this question, simply put, is that autism got into the DSM by way of an accident of history.  Because autism was first studied at a time when psychoanalysis had far more influence than it does today, the medical establishment misclassified the condition as a psychosis caused by a child’s failure to bond with his or her mother.  We know better nowadays, of course; but the psychiatrists still claim autism as part of their “turf” just because they can.

I’ve seen it suggested that autism and other developmental disabilities ought to be taken out of the DSM and put into a Neurodiversity Manual, which would be an interdisciplinary work put together by professionals in fields such as neurology, speech and language, educational psychology, and more.  Such a manual would provide diagnostic codes for access to services, while giving a more accurate description of each person’s needs and characteristics.

While I expect that would be an improvement over the current system of DSM classifications, I’d favor taking it a step farther and including not only the conditions that are now seen as disabilities, but all other identifiable neurotypes as well.  Authors writing about the social model of disability often point out that anything can be a disability if the social environment does not accommodate it sufficiently.  As Julia made clear in her post, our society doesn’t just pigeonhole those it considers disabled; it also assumes that those who appear to be in the “normal” category are all very much alike, and as a result of that assumption, it often fails to recognize and meet their individual needs.

My daughter’s college is a small school that emphasizes group discussion and teamwork, rather than a more conventional focus on lectures and books.  This approach is well suited to her particular style of communication and seems to be the way she learns most effectively.  I believe that her chance of success is much greater in this environment than it would be at a large impersonal university.  If my daughter’s neurotype were less common, a program such as this would fall into the disability services category.  As things stand, however, I expect there are many young people with similar traits who are floundering at large universities and who have no idea why.

Replacing the broad categories of “normal” and “disabled” with individual assessments and services wouldn’t just benefit those on the disabled side of the line.  It would give all of our children a better start in life, so that when the time comes to leave the nest, they’re ready to soar.

As I wait to pick up the kids in the car I slip into sleep-deprived but not tired drowsiness, and an exquisitely sad, shimmery, mauve-coloured emotion washes in, in gentle little waves.  It seems to be about longing for some pleasure permanently denied, and a vision is evoked of a tiny, dry, airless, browned and bare windowed room that has been sealed for many decades.  The music on the car stereo becomes subtly louder and my mind focuses with a strange intensity on every single note as it is played.  Let me look inside at the floor.  I’m curious, are there any dry, disintegrating bodies of dead insects in there, or has the room really been properly sealed for all of these years? Emotions can be places when you have synaesthesia.

I’m smiling kindly to strangers.  (Do you feel as lost as I do? Poor thing if you do.)  I almost enjoy the company of another Mum, chatting as we wait and watch in the playground.  Knowledge that there are so many things that we don’t have in common does not evoke the cold resentment that it usually does.  I don’t consider her motives.  I almost feel like talking with people my age rather than silently staring in at the innocent and beautiful world of the children playing.  I have no special access to any special world.  I am nothing special. My proper role in life is to be a nobody, and suburbia is a safe hiding place.  People rest happily inside boxes in the suburbs.  People rest peacefully inside boxes in the cemetery.  But why am I feeling so restless?  Why do I have to be different?

Attractive people have lost their charisma, and the misshapen take on a beauty that simply cannot be accounted for.  I’ve noticed two people in two days who have the same physical deformity.  I’d never noticed this before.  I feel compelled and revolted by the human race.

The myths that we live by are exposed for what they are.  I re-examine the fact that important relationships can be held together as much by shared fears and shared horrors and shared hatreds as they are held together by nice things.  It’s a grim reality but it’s certainly not without virtue, or beauty.  In my mind I unforgive people in my family, again.

The low tide has exposed what lies beneath, and I can see some gaping holes where important things are missing.  I’ve come to the realization that one of the few things in my life that seemed so easy has grown up weak because it didn’t need to fight for existence, and I fear that the harm can never be undone.  I felt so smug for so many years.  Why did I never see that coming?  Why do I have these ridiculous problems that no other person ever has?  Oh yes, I remember, it’s because I am a freak.

Husband is trying to be kind.  Do you mind if I don’t cook anything much for dinner again tonight?  I’m not that hungry.  I’m living on coffee made with a harsh and potent brew of robusta beans, and paradoxically my usual heartburn and stomach irritation has disappeared.  I cannot comprehend the currently popular obsession with cooking and sharing food.  From where I’m standing, it makes no sense at all.

Purple hardinbergia creeper is starting to bloom, and clicking frogs are calling.  Please, stop, I’m not ready for a springtime surge of energy.  I have no plans, no direction, but I feel that maybe things will never be the same again.

Please bear with me.  I’m just not myself today.

Lili Marlene’s I’ve Lost My Focus first appeared at Incorrect Pleasures, and is republished here with permission.

I have AS.  I am in the process of being re-diagnosed as HFA, or Autism Spectrum Disorder, or whatever it will wind up being called on my chart given the changing terminology.  But I also fit the criteria for NLD and MDD.

MDD is a research categorization, not an official diagnose.  It stands for Multiplex Developmental Disorder, or Multiple-complex Developmental Disorder.  It combines the behavioral profile of Autism/Asperger’s with emotional issues like anxiety, depression, OCD, and psychosis.  It fits me as comfortably as a glove.  It is, if you will, the social-emotional-behavioral profile for my particular expression of Autism.

NLD is nonverbal learning disorder.  It’s a neuropsych profile.  There’s about  seventy point spread between my verbal IQ and my nonverbal IQ.   When I take the Raven’s Progressive Matrices, I score Intellectually Disabled. NLD is, essentially, the neuropsych profile for Asperger’s and a subset of Autism–the subset where verbal skills are not at issue, the subset consisting of those of us who “think in words.”  The kind of Autism that often isn’t recognized as Autism, because “we can talk.”  Our communication is recognized as valid and thought of as typical. We don’t see in pictures, so our spatial-visual abilities are horrid.  We don’t fit the stereotypes.  Some people don’t think of us as Autistic at all.

But people see what they want to see.  They see a kid in Lifeskills and they see someone who is “hopelessly retarded”, “profoundly disabled”, “without a future, beyond hope.”  They see a girl in Honors English and they may hear her humming, but they don’t process her banging her head.  They expect her to be neurotypical, and so that is how she is seen, that is how she is processed. “Julia isn’t learning disabled.  Julia isn’t Autistic.  She’s just sensitive.”  Neurotypical people can usually get away with interpreting people through their behavior and assuming that the behavior arises from a mind organized basically the same way as theirs.  If it becomes obvious from appearance that the brain is different, the person gets written off.  Labels are given to them that don’t apply, abilities are underestimated, and stereotypes are invented and plastered all over everyone into oblivion, obliterating any shred of personhood left.

I get pigeon holed as typical when I am anything but.  They get pigeon holed as hopeless when their is so much potential there.  When “pathology” is recognized, that’s all anyone sees.  When it’s not thought to be part of the picture, no one sees any.

My head is in a fog, but I need to get this down, this is important.

This is what happens when you think of Autism in terms of social and repetitive behaviors, and not in terms of neurotypes.  People get pigeon holed, over- and under- and mis-diagnosed.  Their attempts at communication and connection and learning are ignored, misinterpreted, just plain missed.  Cycles build, and feed on themselves.  And the descriptions and diagnostic criteria do not fit the actual syndromes.

Autism is a neurotype.  So why is it in the DSM?  The DSM is for mental illness and disorders, not cognitive, neurological types.  Autism doesn’t belong; one of these things is not like the other.  Autism is a cognitive disability.  It’s not a mental illness.  More and more, I come to think that what we call “Autism” is really a bunch of different neurological things thrown together.  Which is fine, but we’re not going to get it sorted out as long as ASD remains in the DSM.  As long as we keep being pigeon-holed.

Autism is about communicative differences and difficulties, about sensory differences and difficulties, and about executive function/impulse control/central coherence variations on a theme.  Difficulties with hemispheric integration explain why Autists tend to be either spatial-visual or verbal thinkers, with great difficulty in thinking in a different mode.  It explains why pragmatics can be such an issue when grammar is fine.  And central coherence explains the rest, if I’m understanding it properly.

The social behavioral stuff is all an outflow of that, and of trying to communicate and connect in a world dominated by very different people.  Communication problems can range from meaning-blindness to oral-motor difficulties to SLI to difficulties with real-time communication, echolalia, finding the right words, and selective mutism.  Connection issues seem to have less to do with overt joint attention and social referencing and more to do with speaking the same nonverbal language and having similar interests–the same ingredients of connectivity in typical people, imagine that.  “Repetitive behaviors and interests” are no more fixations, no more “more rote than meaning” than small talk is.

What I’m doing here, what I’m doing on this entire blog, is searching for a proper goodness of fit.  The DSM criteria does not, and never has, fit well.  Newer thinking is needed.  Concepts like NLD and SLI need to be integrated into the Autistic gestalt.  Rather than a broad phenotype of “Autism” examined in light of social and behavioral differences, it is more useful to develop and look at specific emotional-behavioral and neuro-psychological profiles.  Key underlying differences will unite everything into Autism, but goodness of fit needs to be adjusted.  It needs to be recognized that everyone’s Autism is different, that there is more to it, so much more to it, than surface behavior, and that pigeon-holing only frustrates those you could be helping.

Julia Bascom’s Goodness of Fit first appeared on her now-defunct blog, and is resurrected here with her permission. Julia also blogs currently at flashback dream sequence.

(image: Pigeon Holes, lipseng’s photo arts gallery)

related: Time for this Elephant to Leave this Circus

This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

—Jim Sinclair, Don’t Mourn For Us

Most of you have heard about the case of Saiqa Akhter, the woman in Texas who allegedly murdered her two autistic children, Zain (age 5) and Faryaal (age 2).  In her 911 call, she described trying to force them to drink bathroom cleaner and, when they refused to swallow it, strangling them with a length of wire.  Zain died later that day; Faryaal was placed on life support and died the following evening.  In explaining why she had killed her children, she said “Both are autistic. I don’t want my kids to be like that. I want normal kids.”

The deaths of these two children are a tremendous loss, but you’d hardly know it to read the responses of “autism experts,” who spend more time bemoaning the stress on the mother than the horrific nature of her actions.  For example, Marguerite Colston, vice president of constituent relations at the Autism Society of America, told ABCNews.com, “That a family got to that point of stress is unfortunately not uncommon … The stress levels on parents [of autistic children] are extraordinarily high,” she said, noting that one study found that “stress levels were comparable to combat soldiers … You’re now a case manager and a specialist, and it’s almost like you’re not a parent anymore.”

This kind of statement blames the victim.  I will not argue the fact that the stress of raising an autistic child can be extreme.  What I will argue against is the idea that an autistic child creates stress that somehow explains the taking of that child’s life.  I’m troubled by the fact that people look for “extenuating circumstances” when an autistic child is killed, but rarely when a non-autistic (or otherwise non-disabled) child is killed.  In the latter cases, most of the time, the mother is painted as a monster, and there is no attempt to explain her actions at all.

Take the case of Susan Smith, who killed her two (apparently typical) children in 1993 by strapping them into their car seats and sending her car into a lake.  I can’t remember a single “expert” saying that her being a single parent, or being involved in a sexual relationship with her stepfather, or having a history of depression, explained her actions.  The single parenthood, incestuous relationship, and mental health issues were almost universally seen as moral failings on her part, aspects of her life that she could have changed and overcome by an act of moral courage and sheer force of will.  She was condemned for what she did, and that was the end of the story.

Nor can I recall a case in which a minority woman killed her children and an expert attempted to explain it, with a straight face and on the national news, as the logical outcome of circumstances such as isolation, racism, a family history of abuse, urban violence, and poverty.  These are circumstances that mirror battleground conditions far more acutely, and for far more people on the planet, than the stress of raising an autistic child and yet, the outcry against using the “race card” would be immediate were anyone to try to use these circumstances to explain killing one’s children.  And rightly so.  So why is there so little outcry against people using the “autistic card” to explain the deaths of two innocent disabled children?

Could it be that so few people see autistic children as “innocent”?  Could it be that autistic children are stigmatized with words like “unemotional,” “lacking in empathy,” and “inhuman,” language that makes it nearly impossible to see the children as the actual living, breathing, whole human beings they are?

Equally troubling is the fact that so many people seem willing to ascribe the killing of the children to the mental illness of a lone individual, rather than to the social and cultural messages acted out by that individual. In responding to the deaths of Zain and Faryaal Akhter, Dr. John Lutzker, director of the Center for Healthy Development at Georgia State University, said that raising autistic children can result in mental health issues for parents:  “Parents who have children with autism have disproportionate stress and depression compared with the general population,” he said.  “It seems like this woman may have some other issues that went undetected.”

While I can’t pretend to know what went on in the mind of a mother who slowly killed her children by strangling them with a piece of wire, there are many other possible explanations for her behavior besides mental illness, explanations that have everything to do with the underlying messages of the society at large—a belief that her children weren’t whole people, a sense of entitlement to a “normal” life, a lack of empathy for her children’s acute experience of the world, and a general sense that life had cheated her by not fulfilling her dreams.  I’m troubled to read so many people say that she must have been insane when there are very deep-seated, widely accepted social beliefs implied by her words. I suspect that it’s easier to think that the individual must be insane than to look at society’s beliefs about the worth of autistic people, how dangerous those beliefs are, and how deeply they are entrenched in the minds of so many people.

With all the concern for the difficulties of the mother, where is the concern for the difficulties of the children? Where is the empathy for their acute experience of the world?  Why does no one say that there are rational, explicable, understandable reasons for their behavior—reasons that put the burden on their mother to protect them every day of their lives?  Where are the voices explaining the struggles of autistic children everywhere?

By her own admission, Saiqa Akhter killed Zain and Faryaal because she wanted “normal” children.  She killed them because they were autistic.  She killed them because she didn’t want the children life had given her. Far from simply being the actions of a lone and troubled individual, her decision to end the lives of her children speaks volumes about how our society sees people who are different from a mythical “norm.”  In fact, it speaks volumes about the very power of the word “normal” and its insidious impact upon all of our lives.

Rachel Cohen-Rottenberg’s Disabilism and the Demonization of Autistic Children first appeared at Journeys With Autism and is republished here with permission.

Rachel Cohen-Rottenberg’s recently published book is The Uncharted Path: My Journey with Late-Diagnosed Autism.

(image:  Rachel Cohen-Rottenberg, “After Summer Rain“)

“Time to get rid of it,” I told myself, on more than one occasion, as I sat there looking across the dinner table at all those bare branches.  But the plant had been in my home for such a long time that I didn’t feel right just throwing it out with the yard waste, especially after it had gone through such a hard struggle to stay alive.  Even so, I knew that I had to do something about it.  After all, keeping a mostly dead plant in my dining room wasn’t what you’d call ideal interior decorating.  It might also cause negative energy flow, according to the ancient Chinese practice of feng shui, which involves arranging one’s environment in harmonious patterns to promote health and prosperity.

For those who think feng shui is just woo, I noticed an article last week that discusses in more scientific terms the relationship between our health and what we see in our environment.  Researchers studying the visual perception of people who had been diagnosed with major depression found that their retinas were significantly less sensitive to contrast than the average person’s.  That is to say, they literally saw the world more as a gray and featureless place.  The researchers hypothesized that the difference in their subjects’ vision was related to the changes in neural chemistry that caused the symptoms of depression.

The first comment posted in response to the article mentioned that we live in a polluted world which, in some ways, really does look grayer than it once did.  That raises an interesting point.  Because there are many complicated feedback loops involved in depression, I’d speculate that the visual effect observed by the researchers may also work the other way around—that if we don’t have enough bright colors and visually pleasing objects in our environment, even if we are not consciously aware that anything is wrong, we may end up being more susceptible to the biochemical changes that cause depression.

Perhaps the lack of contrast in the modern world may be one of the reasons why such high rates of depression are found in wealthy industrialized countries.  Many of us work all day in offices with bare walls, dull gray carpet, windows that don’t open and that look out on rooftops and parking lots, and rows of identical cubicles.  We go home to suburban cookie-cutter houses decorated with bland features and neutral colors to ensure a good resale value; as with everything else these days, they’re commodities.  We destroy every dandelion we find in our neat green lawns, and we whack every weed that dares to invade our carefully trimmed hedges.  By day our skies often are hazy, and by night many of us can’t see the stars because there’s so much artificial light.

Years ago, before I knew it was a stereotypical autistic trait, sometimes when I brought new brightly colored or shiny things into the house I would just sit and stare at them for several minutes, letting the contrast percolate through my brain.  I haven’t done that recently, in part because I’ve let myself get too busy to think much about decorating; and to be quite honest, I started to feel self-conscious after learning that such behavior had been stigmatized as pathological.  But now I wonder if it might be a perfectly healthy adaptive mechanism to ward off depression in a world with far less visual contrast than the natural surroundings that our brains evolved to anticipate on a subconscious level.

There’s a partly shaded empty spot in my front garden where I recently took out a few small plants and moved them to the back yard because they looked like they needed more sunlight.  Tomorrow I’m going to trim the dead branches off my houseplant and move it to that spot, where for the next three months or so—until the frost comes—it can enjoy the natural light and the rain and the breeze on its last remaining leaves.  I’ll buy another plant to take its place, something that has bright vivid contrasting colors.  And then, if I feel like it, I’ll sit at my dining room table and admire my home’s new interior landscape for a while…