Monday, January 6, 2014

If You Turned the Volume Up on my Brain

There's a deep reason why I think that functioning labels, severity scales, and dominant definitions of autism, are faulty. The reason extends to why I can embrace the term autistic as a way to describe my experience without hiding it or couching it in ways that separate me from other autistics. The reason is that when I observe a fellow autistic at the museum [crouched on the floor, yelling, covering their ears but wanting to cover their eyes too) and their caregiver is hauling them off from the lobby because all of this is drawing too much attention from passersby, I think to myself, "me too". Because that's the way the museum feels.

No, I'm not crouched on the ground trying to cover my eyes and ears at the same time or trying to vocalize to match the auditory assault, but my experience of the museum allows me to know that if I took my experience and intensified it more, I would probably have the same reaction. I actually see it as a profound lack of empathy, understanding, and imagination, that an allistic (non-autistic) person doesn't get it. Maybe it's just ignorance, but that's every reason then to keep reading, searching, and trying to really understand what autistic sensory experience really is.

I've been following Intense World Theory for quite a while now. When my friend Michael Forbes Wilcox posted his own thoughts to a recent follow-on article by Maia Szalavitz, I got to thinking more about how a lot of things hang together through a refocus on sensory matters in autism.

The primary way I have come to understand being autistic is the very embodied experience of my world. I can recall this mattering from a very early age.

Some basic points in my story, which may or may not be worthy of mentioning in this context (and apologies for any repeated mention):

  • Pre-natally, my mother worked at a bank and it was robbed while she was 7 months pregnant with me. I have no memory of this, but the details of the incident and imagining the stress that incident must have caused, I don't doubt the experience impacted me, even if it was just a 7-month cortisol spike.
  • I was colicky and difficult to soothe as baby. I'm told that if they put me an elevator or the car I would fall asleep. Motion helped. 
  • I read early, and taught myself. My mother had no idea I could read until she had me in the seat of a shopping cart and I told her that she couldn't take it out of the parking lot; she asked how I knew that and I replied, "It says it right here [on the handle], 'Do Not Remove From Parking Lot'." This is the stuff of legends
  • I recall a lot of physical discomfort even from an early age - itchy clothing, pilled bedsheets, the confines of shoes, the tenderness of bare feet, dissonance of 80s radio music, horrible perfume smells of old people, distasteful food textures, loud noises, the wonderful smell of leaded gasoline, the startling strobe effects of light through trees, lining up pennies according to year, organizing crayons according to hue, noticing defects in the oriental rug and tracing the patterns with my eyes over and over, always needing to pee urgently because I couldn't tell before it was urgent, gastrointestinal distress (including mid-meal pain and loose stools I never told anyone about), being overwhelmed at attention paid to me, being so shy, being so afraid that I couldn't bear to make noise for fear of being noticed...
  • They called me little professor. For a long time I was touted in my family for being so 'mature' (though I think this was a typical point of praise for not just me), in part because my vocabulary and way of speaking was so serious, so intense. I rarely spoke but when I did it was with purpose, thoughtfulness, and with a tone and language that gave my words a kind of adult quality. I think it masked how much I struggled.
  • I recall in grade 3 how confused I was by the ways girls played, and the politics of friendship. I know it was before then that I felt I was different, and before then that my high levels of anxiety and distress informed the way I experienced the world; but grade 3 remains a retroactive marker of some point at which my memory of deviating from my peers stands out. Before that, I can't say my play or behavior differed so much, but it was some part of the social developmental landscape that changed then -- and I never really quite caught up. School years got more and more insufferable.
I mastered the ability to make a locked bathroom door open and close silently. I learned how to get dishes out of the cupboard without making a noise. I learned which places on the steps made noises and learned to avoid them. I think I did this to not be heard, but also because all of those sounds distressed me.

I coped with auditory processing disorder, an inability to process speech in noise (every sound is the same volume), often missing what someone said but would pretend that I heard.

I was teased for the way I looked, the way I dressed, the way I excelled in school, the way I didn't understand social cues (and specific tricks were played on me because of this). I cowered when the substitute teacher would loudly reprimand all of the unruly misbehaving kids but wish they would shut up because I couldn't hear; I would excel in school only through my ability to read copiously and accurately.

For a long time now, I have liked to wear something on my head. I wear winter hats indoors, bandanas for days and days, loved the years I kept my head shaved because the sensory experience of my head is really important to how grounded and coherent I feel (and covering my head keeps me from scratching my scalp compulsively -- so does keeping my nails short, and I can't have any whites in my nails if I want to tolerate typing).

My memory for textual information is solid -- where I lack auditory memory, I make up for it in my ability to read through a manual for that new piece of electronics or whatever, and recall the information later. Or to bring up odd and obscure facts about something, or a memory of childhood, because of associated information read, smelled, felt, processed in that visceral way I have come to understand as an autistic, heightened version of the way memory works.

I don't look at faces very well. I can feel like faces are too much information. If I'm trying to listen for information, looking at a face will drown out my ability to process the voice. I have learned to mitigate this by looking at cheekbones or hairlines or lips. However I believe I miss a lot of cues, because it's too much information, it always has been. 

In her book When the Brain Can't Hear, Teri James Bellis talks about a feature of Auditory Processing Disorder that opened up yet another realm -- a right-brain aspect of processing tone of voice that she discovered was affected in her after a car accident. She began to perceive people speaking nastily to her. I know I have always felt highly sensitive to the way people spoke to me. While I can't say for sure whether I am misperceiving tone of voice in people, I do know that with some people, mostly personal relationships, I can really hear an exaggerated melody and meaning that I can interpret as hostile. Even non-personal relationships can be this way. Other people express surprise that I can really bristle at the way Tom Ashbrook seems to talk in a sardonic way to some guests or callers -- most people think he's far too agreeable!

Looking back (and into now), it's impossible to tell whether my not reading body language and mishearing tone of voice came out of my sensory experiences, but I suspect this. Even now, I find my ability to connect with others fluctuates with the degree of sensory cohesion I experience. 

What I mean is, that I can be more socially present when I am less overwhelmed: when I'm in a quiet environment, when I'm in comfortable clothing, when my body functions aren't nagging on my attention (or out of conscious awareness but still painful or problematic); when I've eaten well, exercised recently or had sex, which can be highly integrating if it's good, when I've felt not taxed.

But here's the thing -- I learned really early on, I think, that all of these experiences and needs are unusual. Even though no one explicitly gave me the message that it was wrong to feel those things, I instinctively began to hide (and suffer), rather than be a burden or focus of attention. 

It was either a blessing, a curse, or both, that I could basically straightjacket my behavior into Compliant Well-Behaved Girl and still perform well at school enough to not really ever touch special education (I was not sent to gifted program though because of some social/emotional reason, however).

I spoke recently with a staff member at the Aspergers Association of New England about the profile of girls coming to their services, and for the most part, the Compliant Well-Behaved girls are still flying under the radar and being missed, until probably adolescence when they may have an eating disorder, or self-injure, or have other difficulties that lead them to be identified (or not even then; I was self-injuring, but I remained under the labels of anxiety and depression until 2009). 

Just because I was Compliant Well-Behaved Girl, I experienced an intense world. I relate highly and strongly to autistic writers on all parts of the spectrum who talk about their sensory experiences. Some people unacquainted with autistic adults might comment that I'm nothing like the autistics/their autistic child who can't speak, or control their bowel movements, or rock and cover their ears in public spaces... The internet goddesses know how many autistic adults have had to endure battle after battle over how "We Are Like Your Child" and this post may very well draw that kind of battle (and my intense world will cower at it all, which is why I've rarely posted here as the fire got hotter).

But I do relate to autistic writing, especially of a sensory nature, and my strong instinct is that it's all a matter of degree. While on the outside my straightjacketed compliant self seems worlds away from dominant "autism as pity/tragedy" ideas, I firmly believe that if you took my brain and turned the volume even further up, my ways of coping would look very different.

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