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.

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/2010/07/22/embracing-the-social-model-of-disability/ http://www.shiftjournal.com/2010/07/22/embracing-the-social-model-of-disability/#comments Thu, 22 Jul 2010 12:57:58 +0000 Guest http://www.shiftjournal.com/?p=2766

In my last article for The Commons, I wrote about the distance I often feel from the non-autistic world, saying “[I]f you are a typically abled person, we live worlds apart.  You see, I am autistic, and there are many things that I cannot do.”  The feeling was an honest one, and yet, I’ve been troubled by these words from the time I first saw them in print.

I’ve thought long and hard about why, and I finally have an answer.  I’ve come to realize that while I sometimes experience myself as living worlds apart from non-autistic people, this feeling is not a function of my autism.  I am not actually worlds apart from anyone because I am autistic.  I feel worlds apart because the world in which I live is not yet inclusive enough to take my particular set of strengths and sensitivities into account.

In the larger world, two models of disability are always in play.  The first is the medical model, which posits that something is wrong with me, something from which I “suffer,” something that must be treated and perhaps someday “cured” by medical intervention.  In this model, my autism is a disorder, and I am somewhere “over there,” apart from regular folks, separate and unequal.

I have sometimes found myself trapped by this point of view, mainly because I have imbibed about a half-century of negative ideas about autism and the general condition of being disabled.  I had accepted without question the idea that all autistic people would rather be non-autistic, and by extension, that all physically atypical people would rather be typical.  After reading the eloquent and searing words of many disabled people, I have come to understand that this point of view is a serious distortion.  Many, many of us are proud to be who we are and would not want to be different.  The Deaf community is a perfect example of a group that embraces its experience of the world as perfectly valid and celebrates its own unique culture. The Autistic community is beginning to do the same.

Of course, there are disabilities that require medical intervention for health and quality of life.  However, not all disabilities fit this model and even when they do, they cannot be entirely defined by it.  Personally, I have moved away from the medical model, mainly because it tends to create a hierarchy in which some people’s lives have value and other people’s lives do not.  It creates a mindset in which we celebrate the lives of some people, while mourning the lives of others, simply based upon physical difference.  I do not accept this way of understanding the richness and complexity of human life.  I find it unjust and divisive.

An alternative lens through which to view disability is the social model.  According to this model, disability is a social construct.  That is, one can only be disabled in relation to an accepted norm.  So, all the things I value about myself—my acute sensory sensitivities, my deep ability to empathize, my visual acuity, my ability to enjoy silence and a slow conversational pace—become disabilities simply because I live in a culture that does not value them.  For example, because I have hyper-acute hearing, I have to wear earplugs when I go downtown or into any sound-filled environment.  Until recently, I’ve thought of my hyper-acute hearing as a problem, because I find it very hard to converse with other people in public or to concentrate in the midst of noise.

But my hearing isn’t a problem in isolation.  It’s only a problem because I live in a very loud culture—full of noise, full of words, full of TVs and radios and music playing everywhere I go.  If I lived in a quieter culture, my hyper-acute hearing would not be a problem.  In fact, when it comes to keeping people safe from harm, it would be an asset.  In the same way, if I lived in a culture that valued deliberation and a more measured verbal pace, I wouldn’t have the problem of being constantly left behind.  In a society in which impulsive action and rapid speech trump other ways of experiencing life, I cannot possibly keep up.

In the face of this mismatch, the only way for me to stay connected to others is to consistently ask for other people to adjust the environment so that I can be present.  For example, at one of the stores in town, I ask a staff person to turn off the music when I come to shop, and whomever I ask is always happy to oblige. Everyone who works at the store wants the place to be accessible to me, and they know that I cannot operate in an environment with music coming from every speaker.  Because the staff is willing to be flexible, I have full access, just like everyone else.  In stores with loud music playing, the environment is so aversive that I cannot enter, and full inclusion becomes impossible.

Moreover, when I go to my doctor’s office, I use a text-to-text device in order to communicate.  Doing so allows me to avoid coming home in a state of auditory overload.  My husband and I had to work long and hard to find a doctor open to this form of communication.  Because it was a painful, discouraging, and exhausting process, I feel especially fortunate to have happened upon a sensitive doctor.  At my last appointment, in fact, something wonderful happened.  After we had been typing back and forth for about a half hour, she said, “I’m exhausted.  I’m not used to typing so much.  Now I know how you feel with your auditory processing challenges.”

And I replied, “That’s amazing.  Writing and typing are so natural to me that I forget that other people could find them difficult.”

It was a perfect moment.  She understood me.  I understood her.  I didn’t feel worlds apart at all.  I had a different way of communicating during appointments—that was all.  My way of communicating was no better and no worse than anyone else’s.  At that moment, I became more than the sum of another person’s preconceptions.  I felt myself a part of the world, able to express myself fully, with a presence equal to that of every other human being.

So, yes, if you are typically abled, I sometimes feel that we live worlds apart.  But it doesn’t have to be that way.  If we lived in a society that took human diversity for granted, that made room for difference as a deeply held value, every one of us would benefit.  Our view of one another would become much more expansive, much more respectful, and much more compassionate.  Ultimately, we might even see one other as perfectly different and perfectly human.

Rachel Cohen-Rottenberg’s Embracing the Social Model of Disability 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.

We’re not human.

Empathy is a socio-political tool.  It’s used to gain perspectives and viewpoints.  Accusing someone for not having empathy is also a tool.  It’s used to continue the schism of us/them, as well as to put oneself on a pedestal of pity and feed a victim complex.

“How can you be so obtuse?  Can you understand where I am coming from?  The suffering and the pain I am in?”

How many times have we heard this?  How many times have we been accused by our peers and by our friends that we lack empathy and emotion during times of emotional distress and pain?  As we sit quietly by, our eyes trying to access the information that we have been given.

Juxtaposed are our NT friends looking ashamed at us as we struggle in a sea of sensory information. Screaming in pain and/or doing anything to combat the input that we cannot process.  They avert their eyes or accuse us of embarrassing them.  We however don’t point fingers and shout that they lack empathy. Instead. we apologize for being autistic.

Changeling culture has giving us a schism of typical and atypical, in which all those that are neurologically atypical are always at fault.  It is normal for typical to look upon the atypical with disdain and to lack the empathy necessary to understand the footsteps and journey we take as disabled people.  So we’ve grown apologetic for our nature as disabled.  Being overly-apologetic is normal for an autistic person.  What parent hasn’t heard their son or daughter on the spectrum constantly apologize for everything.  We don’t apologize for an action but for being who we are.  Changeling culture has viewed us as mistakes, problems, unwanted. So we apologize for being mistakes in our families.

While we nurse a rather large victim complex, autists need to step back and stop saying sorry for being human.  It’s time to look at what is empathy and what is compassion; NTs and autists alike have seemed to mix those definitions up.  As I stated in another essay about Theory of Mind, every human lacks empathy.  A hetronormative male will not understand the feeling of being gay to their homosexual peer.  A very rich American can’t understand what it’s like to really go hungry or what it’s like to be surrounded by rubble like their Haitian counterparts.  Typicals like to pretend that they do, until someone calls them on their privilege. In all, no human being can be a mindreader; if we can be, why do we still have sexism, classism and racism?

However an autist and a typical both have compassion.  Yet they show it in different ways.  A little girl has lost their dog.  A typical person would hug and use physical affection and soothing words to comfort the child. An autist would find a photo of the dog and make flyers to post all over the neighborhood.  An autist is practical whilst a NT is more emotive.  However it wasn’t prayers and pleading wishes to deities that helped the people of Haiti or the ravaged New Orleansians; it was hard work and real practical compassion.

An autist may lack the understanding of someone looking for their beloved dog, might even suggest that the odds of finding the dog are slim and that it’s better for them to look for another dog at a shelter.  An autist would even accuse the poor man of being irresponsible to not properly put a collar on the dog or microchip it.

Still …

It will not stop him from getting the flyers.

Theorem of Compassion originally appeared at Prism*Song, and is republished here by permission of the author.

A tale of becoming, in others’ eyes, something not quite human…

You ought to have known better than to walk out of your house, late at night on Halloween, while dark wisps of cloud were briskly blowing across a moonless sky.

But your street looked quiet enough; the neighborhood children had all collected their candy hours ago, there didn’t seem to be any black cats in your path, and you felt too restless to do the sensible thing and go to sleep. Although you heard a faint howl in the distance, you didn’t give it much thought. Lightning flashed on the horizon, but you decided that it was too far away to be much of a danger.

By the time you reached the end of the block, the clouds were massing ominously above you, and the corner streetlight—the bad one that you had been meaning to call the power company about—flickered several times before going out altogether.

You looked around warily in the gloom. Something howled again, much closer. A huge bolt of lightning flashed across the sky. Then you saw it, crouching under a nearby tree, an enormous black beast that was far too large to be a real dog. Its yellow eyes gleamed as it leaped toward you, quicker than any living creature. Before you had time to run, or even to scream, it was on you.

Suddenly you found yourself surrounded by a cold, clammy, choking black fog. You felt yourself falling through an abyss into what seemed to be another dimension. Then the fog vanished, almost as suddenly as it had appeared, leaving you standing on the corner of what looked like your street. Everything seemed unchanged when the streetlight blinked back on, and as you ran back to your house and slammed and bolted the door, you tried to tell yourself that it was only your imagination.

The next morning dawned bright and clear, and you went to work, just like always. Nothing seemed different there, either, until you noticed that your co-workers were passing around a magazine, whispering among themselves, and glancing up at you from time to time. You guessed that they were making some sort of dumb joke. After a while, you found the magazine on a table in the break room, open to an article called “Changeling Awareness: How to Spot the Signs.”

You took a quick look at the article, which informed you that millions of seemingly normal-looking people worldwide were in fact Changelings, afflicted with a tragic curse in early childhood, and that a Changeling could be identified by a distinctive pattern of differences in speech, body language, and social interaction. Some Changelings had not yet been identified because of a lack of public awareness of the curse. The article somberly declared that there was no known way to cure Changelings and that their existence was a great calamity for their families and for society.

You wondered why your co-workers had been wasting their time reading such a silly tabloid.

Later you went home, sat down at your computer, and checked your personal e-mail. A message from your son’s teacher came up on the screen, telling you that your son was in need of a professional evaluation because he appeared to have Changeling traits. There were medications that could make Changelings behave more like normal people, the teacher suggested. You didn’t have any clue why she would say something like that about your intelligent, honest, conscientious son, whose personality type had always been very much like yours.

You chewed on the implications of that for a while.

Then you started to do some Internet research. You found that there were thousands of web pages about Changelings, each one more virulently negative than the last. According to various authorities on the subject, Changelings were severely mentally defective and could not be expected to hold jobs, live independently, drive cars, marry, or raise children. You knew that this description certainly didn’t apply to you; after all, you had already done all of these things.  You couldn’t understand what it was about you and your family that was perceived as so dangerous and different.

Walking over to the window, you looked out at a cold, crisp November night in a universe that was not your own, wishing once more that you had been sensible enough not to go out of your house on Halloween.

This entry was excerpted from an article originally published here.

The hordes of psychological “experts” who regularly comment on the supposed near-impossibility of productive, independent lives and successful marriages among autistics, and in so doing blithely consign thousands of children to society’s trash heap with every keystroke, haven’t yet noticed that we’re here.

That’s because, after more than a half-century in hiding, we’re pretty good at staying out of the experts’ way.   We raise our children in quiet, secluded environments where their differences can often go unnoticed, just as our parents did when they were raising and protecting us.   We enroll our children in small private schools or educate them at home.   When they need counseling or speech therapy, we pay in cash, to ensure that no record of any neurological differences gets into the health insurance database.   And we never mention the word “autism” in front of our children.

We are likely to choose careers in which we can work with computers or in laboratories, thus minimizing our social interaction and the ever-present risk of employment discrimination.   We are not protected under the equal employment opportunity laws, and finding new jobs can often be difficult, no matter how excellent our references, just because interviewers think that we look or sound “weird.”   Some of us have found it easier to work as independent contractors or to start small businesses.

How many of us are there?   Thousands?   Millions?   No one knows.

We seek out others like ourselves, tentatively, in the safe anonymity of Internet bulletin boards, taking the first small steps toward the creation of a fledgling autistic culture and community.   A new word emerges from the discourse: “neurodiversity.”   We dare to dream that, some day, we will be able to come out of our dusty closets and be accepted as intelligent, healthy people within the normal range of human variation.

But until then… we, and our children, remain in hiding.

Passing for Neurotypical first appeared approximately five years ago, at Underground Aspergian.

While I don’t have a natural ability to follow some other social cues, I can apply logic.  Most of the time this works.  If I concentrate , I can usually figure out facial expressions pretty well.  For some reason I am anger blind and fail to notice if I am really annoying someone.  In familiar situations where I have learned other people’s patterns and probabilities, I fare much better.

I am also more comfortable if I have someone neurologically typical to ask for assistance when I get stuck on something.  Occasionally things go way over my head and I nod and pretend.

For me, most of my anxiety stems from a feeling of not knowing.  It is a bit bewildering to miss simple social cues.  It makes me feel foolish and stupid if I miss something obvious.  Especially when people are joking or conversation is ambiguous or metaphorical.  I get angry at myself, then embarrassed and anxious.

It is important to me to be a good communicator, I have a special interest in becoming more social.  I am working on improving the way I interact with people.  And recently I am discovering the way I assess myself and social situations is not working for me.

Because of the way my high functioning autistic mind works, I am very good at focusing on fine detail and learning it.  But I cannot seem to learn every combination of every facial expression logically.  There is only so much I can figure out.

While I am learning to accept I will always make mistakes socially, I don’t want to feel like I am putting up with it.  I understand that neurologically typical people have an intuitive knowledge in social interaction I somehow miss.  It is called mind blindness.  Sometimes I miss the meaning of a word, sometimes I miss a facial expression and sometimes miss the entire context.  That is how it is and acceptance is being okay with that.  It’s a choice.  Like choosing a thoroughbred sports car, great on the open roads but it tends to overheat and stall in traffic.

So here I am in traffic.  I just arrived at a bustling party with friends eager to say hello.  And here I am doing the social equivalent of my first driving lesson in an E type Jag.

The Aspie solution of course, if I know enough stuff I can make it.

The average English speaker possesses a vocabulary of 10,000 to 20,000 words out of around a million estimated words in the English language.

Imagine you could make words out of any combination of letters, then imagine there were no rules in language, then thinking only about four letter words…

There are 26!/22! possible combinations of four letters in a 26 letter character set.  Which gives 358,799 alternative four letter words to the word fu*k.  So why do I keep saying that!?!?!?!  Sorry mum, I promised I wouldn’t.  Ahem…

Given that the longest recorded word is 189,819 letters (the chemical name of titin, the largest known protein), if we were to work out all possible combinations of letters up to and including words of this length, it is fairly easy to see there is infinite possibility of combinations of letters that could be used to make words.  My calculator got jammed even trying.

But bear with me here, this is going somewhere.

Spoken language (the part of communication I am good at) with all its infinite probability accounts for a very small percentage of face to face communication.  I think the NLP guys say seven percent.

It seems to me that there are language patterns I repeat, (yes mother, I am working on it).  To learn written language, I had to sound out the words, yet now I recognise them instantly.  I cannot choose to not recognise a written word.  I can even read and write backwards, mirrored, upside down, left handed and pretty much any combination of those.

So let’s say for a moment I want to learn to read another visual language, facial expressions.  What if autistic minds are over focused (stuck on) the building blocks.  What if we are still sounding them out, or worse still don’t even know my alphabet.  What if we could learn more about the building blocks using the Facial Action Coding System?  Or perhaps a specialised simplified version that takes a clear look at 5 or 6 major muscle groups.  Perhaps I need to lift up my head and start studying faces.

The problem with neurologically typical people is, they freak out when I stare at them.  I don’t naturally know how much eye/face contact is enough/too much.  There is no damn logic to it when I focus on the details.  Again, perhaps there is something else to get about the overall patterns of social interaction here?

People tend to follow very predictable patterns and then, they don’t.

Mark Ty-Wharton’s Social Anxiety and Autism appeared originally at his eponymous blog, and is reprinted here with his permission. Mark’s s latest book is The Logic of Attraction.

They tend to be resentful of others achievements and condemn there fellows at University as ’shiny aspies’ as if we had a life in any wise different to theirs.

Well I shall play with that thought experiment of ‘what if there had been a pill I could have taken as a child’.  What might I be otherwise than I am now?

I can contemplate an alternative future, indeed the future I was supposed to have if my parents had had their vicarious ambitions fulfilled.  I would gone to law school, trained as a solicitor and maybe become a partner in a firm.  I would by now be a grandfather, with a doting wife (they are always doting for some reason) with two grown up children, equally successful in their chosen endeavours.

I would live in a comfortable home paid for by the profits of my other investments and I would be nothing like the Laurentius you see today.  I would have lost most of my regional accent, I would dress soberly (for business) play golf and go to the opera.  I might even belong to some important sounding society with letters after my name.

Then again it might not have turned out so sweet.  I might, even this perfectly amenable and tame non autistic and somehow intellectually superior me, not have been able to escape the consequences of an alcoholic and abusive father.  My wife may have packed up and leaved me.  One of my children might have died from a childhood cancer and the other become a teenage tearaway in constant trouble with the law I was supposedly expert in.

I could by now be a bitter old man, liver ruined by drinking, health otherwise compromised by failing joints not helped by obesity from too many business lunches.  My name might not count for much in the world at all, for I could be the butt of all the office jokes because of that slight common hint in my accent, and my failure to be a ladies man, never mind my secretary was pursuing an industrial tribunal for sexual harassment.

I might have been eternally regretful that I had seen my mum die in a nursing home (I had paid for) essentially vegetating, because I was too distant and arrogant to really care.  My dad would still have died early, boasting in the pub about his successful lawyer son, but regretting just as much that he had turned his back on his beginnings and shunned him.

In other words we simply do not know.  Life is attended by so many forks in the road, and not many of them lead to that ideal of bliss in the world.  That is to say other ghosts of my past, other things that occurred in generations before my Father and Mothers even.

It has been a rough week for me, as rough as could be wished on anybody, and for sure my autism has had a lot to do with it.

There is no point regretting the past, even the recent past because you can’t change a thing.  However even so my autism never stopped me engaging in the world of autism, much though some people may resent that it is not our business to be swimming in that pond.  My autism has not stopped me belonging to an important sounding society, with letters after my name, because I have been a person of influence in the community, a force for good.

I do regret I am not a doting grandfather, some things you cannot recover, but that is the way it goes.

Anyway to continue the Reggae theme, here is some more, mark well the words.

Laurence Arnold’s The Road Less Travelled first appeared at in regione caecorum rex est luscus and is reprinted here with permission of the author.

Philip Guo has a write-up of rules for the successful social interaction of geeks.  Really helpful tips like “Don’t be yourself”, “Don’t get comfortable,” and “Temporarily let go of the urge to achieve absolute precision in speaking”.  In case you were wondering, no.  There is not a footnote acknowledging the irony in that last one.

If you’re interested in geeky social tips, though, chances are you have some hardware to fix or maybe a Settlers of Catan game to play.  So let me sum up:

1.) Recognize that people will know you are a geek from the moment they meet you. — Translation: they are judging you.  This is your fault.

2.) Don’t try to change people’s preconceived notions of geeks — When MLK said that all races should live together in harmony, he only meant the pretty ones.  You are not equal.

3.) Don’t get too comfortable and start being yourself — If you begin to feel like maybe you can handle socialization and that the people around you actually like you, this is a surefire sign you’re about to make an idiot of yourself.

4.) Try to talk as little as possible, and when you do speak, only ask superficial questions — Shut up, nerd.

5.) But don’t ask questions about things normal people should know — Gosh, yes.  House, Private Practice, and Grey’s Anatomy are all different shows.  And of course this isn’t silly or superfluous.  What is wrong with you?  Idiot.

6.) Temporarily let go of the urge to achieve absolute precision in speaking — Do as I say, not as I do.

7.) Don’t correct anyone even when they’re incorrect or imprecise — That guy outside with a dead car battery who’s about to electrocute himself with the jumper cables?  If you want him to like you, let him find out the hard way.

8.) Don’t use words that an 8th grader doesn’t understand — People are stupid.  If you are the exception to this rule, you are not allowed to have friends.

9.) If somebody asks you about your job or hobbies, answer in one sentence — Nobody cares.

10.) If everyone around is enjoying the ambient music, background live performance, etc., don’t jump in with any analysis — Seriously.  Are you still talking?

11.) Never start a sentence with “Did you know that…” — Ok, even I’m with the crowd on this one.  I’ve rarely ever had a time where, when no one’s talking, the phrase “Did you know…” was followed with something that improved the silence.

12.) Never start a sentence with “You should really…” — Your expertise and knowledge are useless to the obstinate.  No helping allowed.

So there you go, geeks.  If you want to successfully integrate yourself into society all you have to do is be completely different. Because all that crap about “just be who you are and be confident in who you are and don’t worry about the critics” you heard growing up?  Yeah.  Total bull.

Bob Svenoe’s Tips for Socially Awkward Geeks (According to Stanford) appeared originally at Autistic Disdain, and is reprinted here by permission of the author.

Autistic Disdain is an attitude-fueled gadget blog named after a phrase first used by Gizmodo’s Joel Johnson, in a post that also received some attention here at Shift Journal.

I have a different agenda

I’ve got something to say about life, a commitment to the autistic community, hopefully a contribution that makes a difference for someone else. With foresight, maybe between us we can prevent other misunderstood or misdirected children and teenagers from having to enter lives of hell as adults.

Enter lives of hell as adults

My autism went undiagnosed for 43 years despite relentlessly pursuing an idea that there had to be something underlying my problems. Friends with anxiety got over it, while I continued to have over-sensitivity to life, the universe and everything.

Autism went undiagnosed for 43 years

Having been put through the wringer to gain a catalogue of diagnoses, when Aspergers was suggested I was sceptical. Years previously I identified with a man on TV with high functioning autism. He claimed not to have empathy with his wife and children; as this was not the way I had experienced family life, I discounted it. Then one December morning, after doing umpteen tests, something became apparent to both my partner and the psychologist interviewing me.

Something became apparent

As I puzzled over their incredulous reaction to my analytical decoding of facial expressions, there was a revelation. What took me half a minute to assess, my partner somehow instinctively knew immediately, without question. Suddenly I understood something about my life. It was as if something went all the way back to my birth and unravelled, followed by an absolute refusal to accept what I was being told and the need to look for further proof. What really shocked me was the discovery I simply could not recognise the majority of facial expressions. I learned that like a visually impaired person, I compensate by getting emotional cues from context and vocal tone.

My analytical decoding of facial expressions

I am even unaware of some of my other differences; let’s call them ‘blind spots’. And it’s these ‘blind spots’ that let me get myself into trouble without even knowing it. So autism is responsible for the self-conscious logical awkwardness (Mark always trying to figure out Mark), the constant butterflies and the gnawing loneliness and frustration. Yet an Aspergers diagnosis helped me understand I am okay. It helps me communicate more effectively by taking autism into consideration and realising I am actually comparatively normal. I have finally found a place where I fit.

Self-conscious logical awkwardness

Which leads me to a very important question – What would my life have looked like if I had known this forty years ago?

If I had known this forty years ago?

I failed most of my exams at school. I was completely misunderstood and my school report always said I should try harder. My teachers were at their wits end. I was an exceptionally intelligent child but they didn’t have the tools to motivate me.

I have an IQ of 146

According to a recent supervised MENSA test, I have an IQ of 146. Perhaps the only thing between success in my school exams and me were the conditions I was taught in. With less general and more specific guidance I probably would have excelled.

Empowered people make valuable contributions

I appreciate that not all autistic people are as able as I am academically, but awareness and education tailored to any person’s ability will literally empower them. And empowered people make valuable contributions.

A life of substance abuse and self-medication

With understanding and perseverance I have left a life of substance abuse and self-medication where it belongs. I am now much less worried about the occasional faux pas in social situations and have no need to ‘drown it out’.

Predisposition towards sensory overload

My diagnosis gives me access to being responsible for my mental health. I no longer force myself to do things inappropriate for someone with a predisposition towards sensory overload. In most situations my anxiety is manageable. In some strange way, knowing I don’t know what is going on gives me access to knowing something about what’s going on. I no longer have to get things absolutely right. There is an acknowledgement that I am not doing anything wrong given I am autistic. It’s okay.

The problem I now face

Having recently moved to Bedfordshire, the problem I now face is that my new GP doesn’t really appreciate my diagnosis. As an adult with autism, I would benefit from ongoing support. My experience of CBT in Cambridgeshire was of a compassionate and caring psychologist who was able to deliver my therapy in a context I could understand. There really is a need for more mental health professionals like this.

Generally in the dark about autism,

In September last year (2009) I asked for more help with anxiety. By November I had been interviewed and referred for CBT but had already become frustrated and very depressed. It seems Improving Access to Psychological Therapy (IAPT) services in Bedfordshire are generally in the dark about autism, to the point where after a five-month wait to see a therapist I had one session and was promptly referred back to my GP.

Why bother with all these labels

The therapist in question told me to read a book about worry. She went on to say “why bother with all these labels, why don’t you just get on with your life”. My session finished with her telling me “we navigate life like a ship through a dangerous area of sea” with an explanation she was the captain and if I didn’t do as I was told, that she would jump ship. I was understandably bewildered, angry and a bit confused. It took me weeks to find out the metaphor was something to do with NLP.

To promote an understanding of it

So it is back to the GP waiting room, unfiled and ignored, back at the bottom of a stack of files, because health and social care services lack the specialist knowledge of autism to help me. At a recent speech, for the professional launch of the Cambridge branch of the National Autistic Society, I mentioned there is a huge problem. And by accepting there is a problem it starts to promote an understanding of it.

Speak the language of autistic people

We accept people from all over the world and explain their rights to them clearly in any language they care to understand. My doctor’s surgery has leaflets to help people give up smoking in fifteen languages. So we need to train more people to speak the language of autistic people.

I am not a broken human being

Why write off a big part of society, an ever-increasing number of people, who with earlier diagnosis would have better lives? Understanding I am not a broken human being and how I am is normal for a person with my range of abilities on the autistic spectrum has been a revelation.

Vast benefit to humanity

Simply educating people who are treating co-morbid conditions such as anxiety and depression seems vital to therapy being meaningful to someone whose brain works differently. More to the point, treating a difficult child or teenager with an understanding and respect for their differences could be of vast benefit to humanity, not to mention the amount of money it could save long term.

I lost those years

Maybe somebody needs to point out to homogenised Britain that with the right assistance, people can feel more valued, and autistic people in particular can give tremendous value back. Let’s have less people starting to live life in their late forties and more people getting a life in their early teens, when mine started going really wrong. I lost those years and I can’t get them back. But I can give them to the autistic community by telling my story.

Thank you,

Mark Ty-Wharton

You can find out more about Mark and his projects here; his latest book is The Logic of Attraction.

Mark Ty-Wharton Speaks appeared originally at Brookdale, and is reprinted here by permission of the author.

I suppose I ought to comment on the current topic of debate, the disappearing trajectory of Asperger’s (syndrome, disorder, call it what you will).

I expect I could make all manner of historical comparisons and cite a number of sources, all of which I will subsequently have to do when I am writing up my research anyway.  But (if I am allowed to start a sentence that way) I shall fall back into the land of analogy and go back to a geographical fable.

Once upon a time there were two countrymen, explorers both.  One went away across the mountains to live in a foreign country but the other stayed at home.  However each of them discovered a stream, the one who lived in a foreign land found that the stream got stronger and even though it went through a number of rapids on the way it became a mighty river which he gave a name to.

The other explorer’s stream seemed to meander on through deep woods and almost petered out.  The explorer who tried to follow this stream was almost forgotten until one day a third explorer, familiar with the big river named after the first thought that neglected stream had water in it of a very similar hue and consistency to that in the big river on the other side of the mountains.  This new explorer thought that the second explorer had been neglected and so named this newly rediscovered stream after him.

As time went on and more and more explorers followed these two streams, as they became rivers, down towards the sea, the rivers seemed to merge as they overflowed into the flood plain at the far end of the mountain range which divided the two countries.  They seemed to merge, and then separate, and merge again sometimes leaving isolated oxbow lakes in the way that mature rivers are wont to.  Indeed it became difficult to say whose river was contributing the most water flow.  People argued as to which of the names given by the explorers the delta should be named after.

Then one day, one day, somebody decided that instead of settling the issue by following the streams down to the sea, where the river had become so wide it had lost all distinction as it merged with the tide, they would try and follow each river to its source.

At last they discovered why the waters were so similar:  because both streams had the same source at the watershed.  One flowed an easy path down one side of the mountain into the country the first explorer had moved to whilst the other flowed down the other side through secluded woods until it emerged at the bottom of the mountains onto the plain shared by both countries alike.

It was the same water all along, and the explorers names?  Kanner and Asperger.

A Tale of Two Rivers first appeared at in regione caecorum rex est luscus and is reprinted here with permission of the author.

So I ponder and back I trace to when I could have contracted this illness; I consider how it has affected my life, how it will affect my life, what my future means.

And I ponder my illness….

I “lack” communication skills;
I “lack” social skills;
I “lack” empathy;
I have just a few interests that receive my devotion;
I can be clumsy sometimes, unaware of the strength I apply.

And then I ponder:

How and to whom do I “lack” communication skills?

In my eyes those “well” people around me are loud, obnoxious, over-demonstrative and flighty, applying massive emotional and mental importance to transient or small impact events.

How and to whom do I “lack” empathy?

I have always “felt” but only after I have “processed” with my mind, and in feeling, I’ve learned not to feel too much and not to show it; everyone knows what happens if you cry in school and aren’t a girl.
I can do the needed things that make others, who think only after first feeling, uncomfortable.
I have pretended to cry from grief when those around me are, because I have learned that my knowledge that the dead are missed but only for ourselves is not welcome in the beginnings of grief; I’ve yet to met someone whose cry of grief is truly just for the deceased’s loss of life rather than their own loss of the dead.

How and to who is it “wrong”/”unwell” that my interests are so few but my devotion to them is so total?

How like the hummingbird do most flit from interest to interest; how varied their desire for its fulfillment. This confuses me; isn’t it better to “work” at one thing till its complete perfection than to pick up and then drop something half done or less? Maybe one day I’ll find an answer.

How and to whom do I “lack” social skills?

Won’t someone please explain to me how it is you must be looking at someone to hear them; do the eyes control the ears? How it is you must answer every question, even when its answer is obvious from just a moment’s observation? How is it that All must attribute like importance to the same subjects and therefore discuss them at length? And why, oh, why must so much time be spent expansively communicating, when just the simplest answer or the answer of Silence is often enough? Is your ego so vast that it’s incomprehensible that my Silence on your subject is not from lack of capability but just lack of interest?

Why am I sick, to whom am I sick and what of this cure?

I’m “sick” because the cultural environment I am in is not something I have natural tolerance or compatibility for … maybe humans are all “sick” because they cannot tolerate nor are they compatible with the environment of a carbon monoxide atmosphere?

I’m “sick” because the dominant homo sapiens neurotype finds the society and social methods they evolved and built “compatible,” but I do not.

I’m “sick” because those who have been given the authority to determine this do so from the basis of their own cognitive ability and social-ethical consciousness or that of their predecessors.

And what of my cure?

Am I so terribly wrong? So vastly ill that perhaps I’ll suffer for the rest of my life with difficulties?
Do I know someone whose life is carefree and easy? No, but then others’ problems aren’t always like mine; mine can be Different, is that why I am sick?

What of who I am? Will “I” remain after being “cured”? Doesn’t this difference in my mind, compared to the “majority’s” way, form—as it does for all—the foundation of my Self? What will happen to me when this foundation is altered, when emotion becomes primary and logic secondary, will “I” truly still exist? Or will I be a little more “someone else,” some more “acceptable” to, “compatible” with the dominant homo sapiens society and culture?

I am scared.

But I am Not in fact sick,
I am the from birth wheelchair-bound person in a world that it is not yet “Right” for people and facilities to have equality, awareness and accessibility procedures.
I am the aboriginal meeting Englishmen for the first time in history.
I am the first ever immigrant to the UK.

Thank you; you’ve helped me know Who I am.

And now I must ask of those who say I am sick, that I and children should be “cured” even if that alters who we are by unnatural means, I must ask of you who Demand subversively and unaware of your demanding my conformity to your ideals, your social methods, lifestyle, culture and society . . .

. . . Who Are You?

— Kia Williams

I Am ——  . . . Who Are You? First appeared at WrongPlanet and is reposted here by permission of the author.

Since we are all in the world of words here, a certain semantic reality has to be recognized.  That is the relativity of every concept that is conveyed by them.  No sentient human has any more than a theory of mind, a hypothesis regarding whether what we think is at all cognate with another’s cognition.

It is to me a fact that we build the meaning around the perceived words of others according to our own established schemata of the world.  No philologising, neologising social scientist or psychologist will ever pin down meaning no matter how hard he or she attempts to define his or her terms of reference because in order to explain language we have to use it.  It is rather like Gödel’s [2] theorem of the improvability of mathematics, or the dictionary paperchase where we have to look up the meaning of every word used to define the word we have just looked up ad infinitum.

As Lakoff [3] puts it each of us is an embodied mind and that which we think is wholly constrained within that framework.  I am lucky as a neuro-divergent to have a radically different perspective that allows me in the manner of De Bono [4] a sideways look at the universe.

One error I see all the time is the attempt to argue reality from analogy.  This is a literalist fallacy which springs to mind every time I see or hear of the Autistic “Spectrum”.  As a literalist myself I think I am in a good position to appreciate the deficits of that mode of that kind of thinking.

If we understand that in one sense the “Spectrum” implies that Autism is multi-coloured and variegated and not at all single faceted that is well.  Nonetheless it can also serve to bracket our thinking into linear progressions, of points on the spectrum corresponding and analogous to frequencies of light.  This leads one literally to suppose the existence of an infra red and ultra violet end of the spectrum, suggesting that there are boundaries and directions, that there are points where one comes onto and falls of the spectrum.  All the confusing of High versus Low functioning where the ranges of function are never defined only supposed, apparently self-evident but never explained

The more I read and have read about the spectrum (one of the advantages of my particular autistic mindset being the ability to absorb vast amounts of information at little mental cost so long as it interests me) the more I consider that it is a complicated phenomenon which mutates according to the direction one looks at it.

Alas I am still forced to use analogy, since in essence all language is metaphor [5] and analogy. It is all an extension of the simple concrete terms used to convey common meaning and describe the world so far as it is relevant to survival.

Let us take a dice as an example.  You may look at one face of a die and it is a six but turn it over and it is a one.  A cube is only a six faceted object yet it conveys to us a huge paradox, how can a thing be all these numbers at once, yet none of them.  It is like the concept of the Trinity anecdotally explained by St. Patrick by reference to the Shamrock.

Autism to me is like the die (and the aleatoric implications are not lost either). Baron-Cohen [6] has his Theory of Mind hypothesis, Happé [7] has her central coherence theory, we see Lorna Wing’s[8] triad of impairments and the upharsinogenic [9] categorisation of DSM4 and ICD 10.

Can all of them be true, can any?

I derived the concept of the landscape from considering a WAIS intelligence profile, and the meaninglessness of looking at the mean score as a means to understanding anything.  To me that is like trying to navigate an aircraft over unknown terrain by setting ones altimeter to the mean elevation and navigating along that.  One will miss seeing anything in the valleys but worse than that one will sooner or later hit a mountain.  This is an over simplification for mathematician I am not, spatial thinker I am and can comprehend the reality of a space beyond three or four obvious dimensions.

If we were to plot every observable trait of autism each along its own two dimensional axis and assemble them at conceptual right angles to each other as one does in a 3D graph we will see various shapes emerging which alas it would take a topologist to describe.

I can only attempt to simplify this for understanding, by reference to one example.  Take Asperger’s syndrome. If you look at it solely in terms of social dyslexia and you are looking at one continuum only, turn the multi-hedron over and you might look instead at motor deficiencies, turn it again, see perseverations and all absorbing interests.

The single faceted approach of diagnosticians attempting to make sense of what they perceive to be an individual deficiencies look only at the strongest manifestations of a thing and furthermore, human relativists that they are, colour there perceptions according to preconceived schemata.

Thus one may be diagnosed with obsessive compulsive disorder, one with semantic pragmatic disorder, some with central auditory processing disorder, another with dyspraxia and another perhaps with dyslexia according to whatever present strongest, whereas to me they are all mathematical shapes within the multi-axial model, islands in the neurodiverse landscape as it were.

It is like any map where the different colours represent man made political boundaries, that is to say the diagnoses found in the manuals, but the land is bordered naturally by rivers and valleys where one people inhabits more than one country.

Hitherto the scientist has proceeded with Occam’s Razor in hand, trying not to multiply entities in search of a simplified theory.  I say put away the razor and get out the shopping basket, throw everything in and then only discard it when you are sure it is not relevant.

Rainbows End first appeared under the title

Rainbows End: Towards a multi-axial neurodiverse landscape. An alternative perspective on mapping the autistic/spLD phenomenon.

Revised from an impromptu version prepared informally for the 2002 World of Difference Conference,

it appears here by permission of the author, Laurence Arnold.

Footnotes and bibliography available at the author’s website.

Three Mile Island nuclear plant

By now, I expect we’ve all seen plenty of articles, books, and other media depicting the “autistic meltdown,” wherein a slight change in routine supposedly triggers some kind of massive brain short-circuit and an instant eruption of violent rage.  This image, which a few years ago was found mainly among the haters at FAAAS and other similar bigots, is now being plastered all over the public consciousness by mainstream authors such as Jodi Picoult in her recently released novel House Rules.

The inevitable result is widespread discrimination, of course, when hiring managers and other decision-makers start looking upon autistics as walking nuclear disasters who might explode at any moment.  If any other minority group had to contend with a hugely damaging stereotype like this, you can be sure they’d be screaming bloody murder about it.  But the autistic community has done very little to oppose it; rather, many of us are continuing to use the word in routine conversation, perhaps trying to redefine it a bit around the edges, but taking for granted that it really does refer to something unique to autistics.

However, there’s no scientific evidence to support that belief, no matter how the word might be defined.  Nowhere in the diagnostic criteria does anything about “meltdowns” appear.  Brain imaging studies have not identified structural differences that would account for them.  As far as I know, there haven’t even been any research studies—with appropriate controls for the subjects’ baseline level of stress and other relevant factors—establishing whether the frequency of “meltdowns” is any different among autistics than among the general population.  (If you know of any such studies, please post a link in my comments.)  In short, we’re talking about a stereotype that is based on nothing more than anecdotal stories.

Of course, I’m not arguing that autistic people don’t have unpleasant reactions to stress and overload.  Certainly we do.  We’re only human, after all.  But what I’m disputing is the idea that “meltdowns” are something intrinsic to autism, rather than a consequence of what chaoticidealism accurately describes as an “underlying, dangerously-high stress level.”  What I think happens, in many cases, is that the stress of living in an autistic-unfriendly environment builds up over time; and then the blame for the resulting “meltdowns” ends up being wrongly attributed to some sort of mysterious autistic brain cooties, rather than being placed where it belongs—on the detrimental situation that created the stress.

So let’s start recognizing and acting in our own best interest, people.  If we want equal opportunity in the schools and workplaces, we’re not going to get there by meekly letting ourselves be described in terms that cause school administrators and employers to see every autistic person as a threat to public safety.  And if we want accommodations to make our environment more comfortable and reduce our stress levels so that we can be more productive at school and work, we’re not going to get those, either, if every time we react badly to a stressful situation it’s just presumed to be the way autistic people naturally behave regardless of the circumstances.

Crossposted from Whose Planet Is It Anyway?

The Ghost Dance soon lost its popularity with the tribes when no restoration happened. The buffalo remained on the verge of extinction for many years, and the families on the reservations continued to live in poverty. The tribes lost much of their history and culture when large numbers of children were taken away to boarding schools to learn English and to become assimilated into an America where their skin color would always mark them as second-class citizens.

Now, over a century later, the world we live in bears little resemblance to the one that the Ghost Dance believers sought to restore. Buffalo herds are no longer a rare sight, thanks to bison conservation efforts and commercial ranching, but they no longer have the cultural significance that they had when the tribes relied on hunting for survival. And while a modern lifestyle of burgers and fries, pickup trucks, paychecks and mortgages does indeed have some advantages in that most people nowadays don’t have to hunt anything to put food on the table, it also has its constraints. In today’s world, we almost never look out over wide-open landscapes, breathe in the magic of a new day and feel confident that the Earth will provide for our needs. We just stop at the local burger joint for a take-out meal.

Sometimes I feel like a ghost blogger, sending forth my words to dance on glowing screens in the hope of restoring a world that has been altered irrevocably. When I write about autistic people and our way of life, I have in mind a social minority culture that existed long before today’s labels and diagnostic categories. This culture, the one in which I grew up, strongly encouraged a love of learning and of the natural world. Passionate interests were often discussed at length, not stigmatized as symptoms of an unfortunate disorder. Like the tribespeople when the buffalo still roamed the plains, we felt an almost mystical confidence that there would be a place for us in the world.

This is not, however, the existence that many of our young people know. Like the conquered tribes struggling to survive on the reservations, their natural way of life has been taken from them, forcibly suppressed and branded inferior. Many autistic students attend segregated schools where, like the Native American children in the boarding schools, they are taught that they must change almost everything about themselves before the majority population will grudgingly tolerate their presence.

At some point in the future, mainstream society’s greater awareness of autistic differences can be expected to have more positive outcomes. Schools and workplaces will adapt to accommodate our needs. As with other minority groups, our diversity will be accepted and our contributions to society valued. Our right to self-determination will be protected. Our culture and way of life will be recognized as legitimate.

And yet, when this happens, we will no longer be the same people.

Crossposted from Whose Planet Is It Anyway?

I think my brain was already wired for meditation/mysticism since my formal education was so late.  When I was moving from home to an independent living program and then on to college, the transition was very difficult.  The stress builds, and it has to come out somehow.  I had everything from anxiety attacks to expanded consciousness.  I will describe the expanded consciousness.

The expanded consciousness has no chain of thoughts.  One is no longer concentrating on anything or anxious either.  At the same time, the senses are extremely heightened.  One time when I was meditating (I had learned to meditate informally) I didn’t know whether I was awake or dreaming.  I also noticed my senses actually operated randomly.  In microseconds you are aware of your foot, the bird singing, a person laughing, etc.  There is no one there directing attention to this or that object.  That kind of thing is necessary for planning, for accumulating tension to be released, etc.  It is not necessary for life itself.  The ability to direct attention must have been crucial for the brain evolving the ability to plan in terms of time and space, and might have further narrowed our perception of the world.

If our early ancestors communicated through dancing, and if autistic people have their genetics, it is probable that these ancestors did a lot of twirling in their dances.  From what I read on autistics, one activity they do is to spin around and around.  I also enjoyed spinning around and around when I was young.  The social worker told my mother that I would be disoriented, but I was sensible enough to hold on to the couch, switching hands one to the other as I spun around.  I also know the Sufi mystics spin around and around as a way of getting in touch with the divine.

However, the main reason why I thought a few years ago that autism could have something to do with our natural primitive state was comparing Temple Grandin’s descriptions of her senses with that of U. G. Krishnamurti.  Temple Grandin is an animal trainer who says that autism is a kind of default mode the way animal’s function, without a coordinator to regulate activity.  U. G. Krishnamurti was a sage who died recently. He claimed he was freed from “the stranglehold of thought.”

Krishnamurti described the natural state as lacking a coordinator.  He describes the visual system as a movie camera taking still images, and the brain as a projector stringing them together to form a continuity. However, in the natural state, there is no cameraman directing the camera, no ego or psyche.

Temple Grandin also describes how the autistic state is similar to an animal in that there is no one coordinating the senses.  She describes how a friend, Donna Williams, experienced sensory overload to the point where the cat was just a blob, and she could only make meaning from a clock ticking or a washing machine.

Krishnamurti also describes to an author the state of not feeling a body:

The same afternoon, after lunch, as we sat gossiping, I noticed that U.G. kept banging on the wall cupboard with a loud bang.  I asked him why he kept on doing that.  He said, “Just to see if I am there. I can’t feel my body.  This bang shows me I am here. It is a very funny situation.  Not much difference here between me and Valentine.  Her brain is damaged, mine still functions.  She is afraid of this situation, I am not.”

It sounds similar to the severely autistic people losing the body boundary.  One can also experience this in meditation.  I even experienced while walking outside, where I wasn’t sure whether it was me walking on the ground or the ground moving under me.  It reminded me of the lyrics to a disco song, “I feel the earth, move, under my feet.”  Krishnamurti also said the only difference between him and the “madcaps” was that the “madcaps” have images which aren’t there, whereas Krishnamurti doesn’t.

Andrew Lehman claims that many people with mental disorders and addictions have non-symbolic ways of expression.  It is possible that they go mad when they are unable to find an environment suitable for their free expression and large absorption of information.  This lends some credit to the idea of “a fine line between genius (actually giftedness) and insanity.”

Lehman says that a lack of warm touch, as one might call it, from various people, especially women, may aggravate autism.  Temple Grandin, in fact, designed a chute designed to relax frightened animals to accommodate autistic people.  The machine uses deep touch stimulation to calm the autistic person, and gradually the autistic person can learn to tolerate more gentle touch.  I know from some sources that in pre-industrial folk cultures often the women carry their babies on their backs.  I believe my mother also said this was common in Japan before World War II.  She said, “The baby can also see what the adults see,” since they are on the same level as the mother.  If this closeness also provided deep touch stimulation, then autism could probably have been less aggravated.

I remember a show about a British man named Daniel, an autistic savant who could make vast calculations with symbols from his own brain.  However, unlike most savants, he is socially normal and talks normally.  I remember on the show I was watching his parents said they would put him in a hammock when he would cry, and they would rock him intensely to calm him.  Probably this helped Daniel retain his gifts without becoming disabled?  Certainly the deep touch stimulation and rhythmic rocking are similar to warm water baths, yoga, tai chi, and deep breathing exercises.  My body naturally flexed, straightened, and stretched in a rhythmic-like motion when the tension was being released during my move to college.  My main intention is merely to point out some possible patterns between mysticism, autism, and the natural state.  Whether they are direct or indirect I can not say.  I feel that if the various gifted people in the world, including the “teachers” and “geniuses” had not been venerated or lost, they would mostly live ordinary lives and probably make an appearance on “Ripley’s Believe It Or Not.”

Note: UG says that the mystical experience is like a tremor compared to the natural state, which is like an earthquake destroying everything.  For further reading, a website on meditation and the science of mysticism is here.

Sources:

Calming Effects of Deep Touch Pressure in Patients with Autistic Disorder, College Students, and Animals

Consciousness in Animals and People with Autism

U. G. Krishnamurti

– Tetsuya Sellers