Aspies In The Dark

Now introducing: The Invisible Man.
Some people would like very much to disappear. I remembered the first time I did, in the fullest sense of the word. The body fades into the bland color of carpet flooring at the grade school, emotions in abstentia, mind, well, I couldn’t tell you. As to a dull-lightning-rod it hit me malapropos to every situation I could not compute. I was constantly reminded of my ‘autism’ although I had no word for it as such.

Indubitably it is difficult to find words to match feelings, especially with such a wide gap of separation between the activity of neuro processing and the faculty of gut knowing. It took me twenty-six years to even begin to find the words. Some of which arrived in the form of one of the greatest American counter cultural writers.

Ralph Ellison’s words, although you have read them before, are worth repeating: I am an invisible man … I am a man of substance, flesh and bone, fiber and liquids – and I might even be said to possess a mind. I am invisible, understand, simply because people refuse to see me…When they approach me they see only my surroundings, themselves, or figments of their imagination – indeed, everything and anything except me.

I was quite keen to this idea at an early age. I had become invisible. I had become a ghost. I had one thing, the most peculiar childhood sensation, possessed of the idea that I was indeed not sitting on the ground where my behind was planted, that others could not see me. I was, or so I was convinced, present in a given social situation without being available physically in the fullest sense. Out of all my childhood experiences, this one is the most prevalent in my memory today. It’s also a repeating one, skipping from page to page in the memory bank.

“The Intensive Investigation of the Problem of Disappearing and then Reappearing”: these are the words of dance therapist and psychologist Joan Chodorow describing a child’s simple game of peek-a-boo. The game of peek-a-boo is timeless because it resonates perfectly with some of the earliest stages of human development. Amidst the gaggles of laughter is an innate drive of the human animal to resolve the question of when an object is present and when it is not. For the child with autism, this innate struggle is inverted quite viscerally to the most intimate level. The object which is the focus of the investigation is the self, but not only the self, it is the attention of the body.

My readers should not be guided by the idea that the boy had no “awareness” of the things that happened around him. He still appreciated a soothing voice, the advertisements on the television fascinated him.

He loved the white clouds in the blue sky, the wind that blew away the paper bits from his hands, the soft light of the dusk – and many more.

I do not want my readers to yawn at my list, which could be longer than the one I have given.

The main difficulty was that the boy was loosing control over his body. A sense of denying its existence was so strong, that he could not respond to a situation the way it should have been done.

- (Tito Rajarshi Mukhopadhyay, The Mind Tree, pg 22)

Published author and successful autistic self-advocate, Tito Rajarshi Mukhopadhyay wrote these words as a part of a fictionalized story about an autistic boy based on his own experiences on the more severe side of the spectrum. When he wrote that, “The main difficulty was that the boy was loosing control over his body” … “A sense of denying its existence was so strong, that he could not respond to a situation the way it should have been done” he could have been talking about any of us.

What you are reading is the beginning fruits of a struggle to plant seeds of new understanding on the fertile ground of all of the rolling changes in human culture. Autism is an official mystery. How then shall we consider autism? What does its dramatic increase from 1 autism case in 10,000 births in the nine-teen eighties to the 1 in 110 births of today – coupled with the related childhood epidemics of ADD, ADHD, every specialized acronym for learning dis-orders and delayed development included – tell us about neurological changes and the unprecedented changes in human society and the environment? Today’s avant-guard of autism self-advocates are beginning to articulate one function of autism as being a kind of provider of evolutionary perspective.

William Stillman is one such high-functioning self-advocate for the rainbow spectrum. Stillman introduces one of his books with a radical statement. He says, “the world needs autism”. Yes, autism is speaking, but the interpretations of what exactly it is saying are long-winded and varied. Here we have one such voice of clarity.

Considering that males are four to five times more likely to be autistic, the implication suggests a softening of aggression in this gender, inaugurating a world at peace. Toni’s foresight also evokes the Biblical Beatitude, “Blessed are the meek for they shall inherit the earth,” further implying not evolution but revolution. And if studies conducted during a 20-year period by the German Psychological Association, that reflect an increasingly less-sensitive, more-dangerous culture with each succeeding generation, are valid, the autism revolution is transpiring not a moment too soon. We are in the midst of a spiritual renaissance […]”

- (William Stillman, The Soul of Autism, pg 53)

The list of questions that comes up is as much of a multiplicity of loose ends as autism’s actual medical designation. Autism. It’s the mystery thing that came from a vacuum – from the official nowhere land of indeterminable causality – and it is spreading, I’m assuming, much quicker than the numbers can follow. As far back as I can remember the specter of autism has plagued my body and mind. My earliest childhood memory borders on the absurd, colored by a state of intoxication unknown to many typically-abled people. Playing with a noise-making toy clock built to look like a cartoon owl; I was overcome by an urge to laugh out loud. I remember the sensation of an unstoppable force that flowed, streamed uncomfortably through my nervous system.

There was something akin to a colony of maggots eating away at the part of the body directly beneath the skin. They bit at me and stung me with their poisons to ignite awkward sensations of non-being underneath my skin. I felt myself itching with the need to know exactly what was the unstoppable force that drove me to the edge day in and day out. An eerie, hollow sensation of black numbness pervaded over my soul. Sometimes I felt like I was falling apart from the inside out. Sometimes I felt like I was drunkenly exploding with manic energy. Sometimes I experienced myself - quite viscerally - as a walking corpse on the earth. There was a disturbance piercing my consciousness and ripping it into disparate parts.

The physical disturbance begets the emotional disturbance and the emotional disturbance begets the physical. I was upset by my apparent lack of self-definition. At an early age, I exhibited no inspiration towards any of the pre-manufactured and culturally approved identities available to me. I suffered from carelessness. When I looked in the mirror I got stricken with terror because I felt I was looking into an expansive void of endless empty space. I was terrified at the sight of “me” and also others acknowledging this “me”. I was sensitive enough to know that everyone would mock me every time I appeared in public.

I became anxious and guilty when people stared at my eyes. It wasn’t merely that there was something severe about me, even wrong about me, but that I was a non-corporeal being, or so I felt. I was a seed but not the full transmission of a seed. I was born half past human, less human than my friends and family. I was set up to fail, or so I felt. I felt that I knew of no one like myself, that this half-seed was like an alien seed hatched on the wrong planet. I was compulsively avoiding typical reality and compulsively entering strange altered states of consciousness in order to calm my nervous system. I was something of a cognitive escape artist. The environment in which I grew up is popularly defined by such escape artists. I grew up in a Microsoft colony presided over by one of the richest and famously genius men on earth, our own high-functioning autistic Bill Gates.

The excess spasms of energy from which I suffered frequently could be calmed by self-stimulating repetitive motions that made me feel intoxicated. My usual specialty was the art of spinning around in circles in the tire swing for hours. This was my favorite childhood activity – it was a trance that took away much of the apparently inexplicable pain of my childhood. But it was also an unstoppable force, something I have a hard time articulating. ‘Stimmying’ in my experience has been a human need to some extent and a strange sort of addiction in another. But what the neurotypical observer rarely understands is that ‘stymming’ starts with necessity, it is an outlet for a previously indefinable – and possibly immeasurable – excess energy – but from where?

Every time I could afford it, I would swing around to the local public park and use the swing set [to self-stimulate]. I always had an elaborate internal fantasy world to play within, much to the chagrin of my babysitters, teachers and caretakers. I had absolutely no sense of other people’s social boundaries for behavior or of the reasons-why people behaved the way they did on any occasion. My parents tried with much tragedy and desperation to raise what everybody in the straight-laces of this “eastside” burb thought of as a retard child. Words like ‘retard’ hovered around me even though I could not imagine their literal meaning. Albeit, I was sensitive enough to feel their abusive intention.

My behavior was erratic, unpredictable and weird throughout my developing life. I couldn’t be made to care, not even a little bit, about what other people’s social standards were. I was living in my own damn world. People around me were getting upset all of the time and screaming at me – but they were clueless. They didn’t think for a moment that I didn’t make the connection between their screaming and my behavior. Their screaming was just something that happened. But that didn’t make it any less scary.

But when I became too stimulated by people talking too much, all of their words started to scramble in my mind and I would start to scream because I thought that people were trying to hurt me with their words. I felt that I was under siege every time I went out in public. The senses were areas of extreme sensitivity to me. I had every symptom of autism spectrum people, but was never diagnosed. The experience of autism for most of my life has been something of a choose-your-own- mystery journey.

This gets us to an important point – one that I will return to later in this article. That the first rule of autism awareness is the immediate sensitivity of the autistic individual to the fact that the neuro-typical people want to change her to the very core. They know who thinks they are sick and they know who is relating to them with empathy and genuine interest – ‘cause the way people think about us is reflected in their behavior. In fact, the person with autism has a profoundly evolved sensitivity and vulnerability. The clever neuro-typical observers have already thought of this as being a highly-developed “sense organ” not unlike how some animals can smell a piece of meat from three miles out.

As of yet, the mainstream of the autism world has not understood that we can smell what you’re made of when you appear in the doorway with your ABA-autism-therapy materials. Your little friend probably feels besieged even before the appointment. If you are there to make her normal, strap her to a chair and subject her to animal-training methods then you are not making any friends. Admittedly I sometimes find myself frustrated when reading accounts by ABA therapists about their challenging children. I oft. feel that even the most expensive autism centers (always run by neuro-typical persons) have forgotten the most basic rules of engagement in human social life. To me there is still a question about whom amongst us (“neurotypical” or “autistic”) has the most challenges relating to other people outside of a narrowing window of perception.

As someone who has been through traditional ABA training. I have to give this warning: unbenknownst to them, they always train these silly dime-a-dozen ABA therapists in a way that seems to activate the psychopathic and abusive elements of people's personalities. Autistics often are coming out with stories later in life about being abused by their own therapists and caretakers. Indeed: I have never met an aspie who has not suffered some kind of primary violation on the part of people who claim to love them. The autism world itself actually both heals and enables the illness aspect of what we call autism - this is why there is never any clarity on anything. The training of ABA therapists in particular, is enabling to people's power-trips and abusive characteristics.

If there ever is a world where the devil and the angel are confused - it is the one we live in. And if you put your child in an institution - he will be abused in ten thousand invisible ways for the rest of his life. Everything about the situation creates itself. The institutions, the lack of contact with the earth, the neurotoxic food which is almost always given to institutionalized autistics. Unfortunately, I cannot share too many stories of institutional caretaker abuse. I want you to understand that I am shut up and shut out, more often than not. And so are the best people who can help your child.

Before journeying somewhere more complex – consider that sometimes the reason someone is giving the silent treatment is because she is resisting what the people are trying to do – and because, maybe, just maybe, some of our self-proclaimed curandados are so out of contact with their own humanity that they are not capable of seeing ours. Please be upset. Please throw your shoe at the wall, spill your coffee. When one of the low functioning kids I have befriended was put in a dark-chamber isolation-unit (dubbed a “timeout box”) for a prolonged time in the Olympia Public School District he experienced “autistic regression”. Clearly there are greater reasons other than psychological abuse that warp the autism mind into a new way of being, but this example is mind-boggling in its reflection of a broad lack of empathy and awareness. Autism is actually a ripple within the waters of human self-awareness. Autism contains the seeds within itself to support its own transformation. Without a doubt, there is a long winding psychological geography within the autistic person, a spiral actually. But the spiral geometry already wants to unwind, it wants to bring out its unique gifts and perspective to the external world. Our actions, even when typified by a context of “educating” or “normalizing” spectrum kids [adults too], may support or hinder the unwinding of this spiral accordingly.

Incidentally, the “timeout box” incident has been reported on by the local press. Consider the following excerpted from an ’06 report as printed in The Olympian.

During a presentation at the board’s public comment session Monday, parent Lisa Ritter showed a picture of a small room for children with autism. The room, which appeared to be similar to a department store fitting room, is located in the corner of the classroom. The photo showed scuff marks from shoes and a padded door. The room is called a “timeout space” by some district administrators and a “timeout box” by some parents.
- (The Olympian, June 14th, 2006)

I grew up with a very keen awareness that there was something radically different about me, that there was some shift at the core of my being that made me different than everyone else in my school. Of course, this translated into an inferiority complex. I suffered physical and emotional abuse at the hands of other children and by adults. The worst of it always happened at the suburban summer camps. It was safe to attack me physically because nothing I said could be believed and I was already overly emotional and was often making sudden emotional outbursts anyways. I had an eerie sensation of a life being lived as a blank sheet and I found myself asking “why me” all of the time. If I had a body or a ‘self’ in between the abuse of my peers and the momentum of the pain and confusion from within - I was not aware of it. To where does one’s heart travel when a person is born like a ghost? Welcome to my world. Our world.

There is a Defeat Autism Now dvd presentation which illustrates our extant state of affairs more beautifully than I ever could. A mom tells the story of the recovery from mental-somatic despair of her autistic son, who comes to her one day and says, as if well planned and with a lot of intention, “momma, i’ve just come back from the dead”. Autistic people are constantly making some attempt to describe their experiences of leaving and coming into different states of mind and being. To learn to interact with normative society requires a major shift in consciousness. Or, more broadly, a giant leap into the dark. I would like to suggest that the success of autism therapies and approaches depends on an expansive willingness, curiosity even, to experience the dark.