Sunday, October 6, 2013

Central Auditory Processing Disorder

I wrote the thing below the video after waking up from a dream in which someone moved my notebook from the seat beside the teacher (who happened to be Barack Obama, just finishing a radio interview). When I mentioned my notebook had been at the seat, the person sitting in it resisted moving so I begrudgingly sat beside them, with someone else to my right. Then I experienced not being able to pay attention to the seminar class. Person to my right kept talking to me. And feeling angry, yet holding back being able to do anything for fear of seeming controlling. The rest spilled out from there. 

This doesn't encompass all of the ways I think I am affected by having an Auditory Processing Disorder, but words only go so far. 

I also offer up this wonderful short film called "How English Sounds to Non-English Speakers" as a different take. While it's not the intention of the video makers, I feel this captures my experience well. Notice if when you're watching the video, whether your mind or ears are straining to make out the words that aren't English. You can hear some of the words just fine, but then a lot is just garbled. I don't always hear that way, but it happens. And it is oh so taxing.

Auditory Processing Disorder means..

Trying to listen to people and having their spee jus not soun rye 
Missing the majority of emotional non-verbal information because it's not possible to 
take in all of the body language and facial expression and still process what they're 
Not really learning how to express emotion non-verbally because that information never 
made much sense

Seeming controlling because where we sit and who sits where is important to being able
to hear anybody
Seeming anti-social when it didn't matter that the maitre'd moved us twice, because 
afterwards someone seated a loud party of six right near our table
Going to a loud environment and needing a day to have silence afterward

Trying to converse, read, write, paint, or think in a loud environment and feeling unable 
to do it
Just not going places because they are too loud and chaotic, even if not trying to have a 
Finding out that those places don't seem loud to other people

Feeling a physical constriction of the ear canal when uncomfortable noises happen
Not enjoying 80s music because MIDI sounds are painful
Knowing what a sine wave sounds like because it hurts
Feeling "old" at 19 because loud bass coming from the next floor of the dorm is a 
Sensory nightmare that brings on nausea and JUST MAKE IT STOP

Tolerating simultaneously the noises of the hard drives, air conditioners, dying 
fluorescent lights, squeaky chairs, squeaky shoes, nails on denim, loud breathing, 
music through someone's headphones, brakes on a car a block away, sirens, piped in 
music, plates clanking, keyboards clacking, paper rustling, other conversations, birds 
outside, tinnitus inside, noises of cars, church bells, telephones ringing too loudly, 
-- and then people wondering why one direct tiny thing creates a overly sensitive reaction

Showing up early to get a seat in the front because not sitting in the front means it is 
impossible to filter out people talking who shouldn't be
Realizing that five minutes before the event starts no one else is in the front row anyway 
because no one sits in the front
Being perceived as the teacher's pet because paying attention requires all the focus, 
and sitting in the front is too keen for the cool kids.
Getting older and realizing that being the teachers pet wasn't a bad thing, except it has 
resulted in fear and self-consciousness every time because of all the teasing.
Not even understanding how much teasing happened because it was not possible to 
hear most of it.

Writing everything down because reading the text is easier than hearing it, but then having writers cramp AND brain cramp by the end because it was so much effort
Figuring out just the right amount of effort to apply to be able to hear and process, but 
not so much that focusing to the end is impossible

Feeling emotionally broken because upset and excited and angry voices scramble 
Thinking to the point that nothing makes sense
Feeling cut off from everyone because nothing makes sense

Asking for an assistive device every time at the movies, and only going to certain movie 
theaters because other theaters don't have the desired movie in captioning that day 
which means watching a movie but not understanding it
People not understanding why a captioning device would be needed for someone who 
seems to hear just fine
Videos online with no captioning and the music is too loud so turning up the volume 
Automatic captioning on youtube that doesn't work (which is worse than no captioning)
turning on some music in order to relax and then getting stuck trying to do the task that 
was at hand

Trying to listen to a person while doing a task and missing parts of what they're saying
Having to ask a person to repeat themselves
Having to ask a person to repeat themselves
Having to, sorry, ask a person to repeat themselves
Feeling embarrassed when it still doesn't make sense

Feeling like people expect an answer faster than it's possible to process a question and 
then formulate an answer
Stumbling through a group conversation because it's not possible to process five other 
people at once

Feeling fake because making eye contact while conversing makes listening hard but 
looking away makes people think they aren't being paid attention to
Feeling fake after discovering it's possible to trick people by looking at their foreheads or 
their lips

Feeling not smart with a far above average IQ
Feeling slow because it takes longer to respond
Feeling powerless because some voices are too hard to hear

- by Karen. 
You may link to this post, please only republish with permission.

Monday, January 21, 2013

Everywhere I Go There I Am

I didn't really know what to call this post. I've been a bit "underground" of late, despite recent posts. I duno. Part of it has to do with the new job -- which has been amazing, by the way, and fully accommodating of autistic me, and while I still overcompensate in some ways, I feel the easement of demands on me to be "not me". It's a paradigm shift that I haven't fully processed.

This post is in response to some articles, I guess. It's an attempt at my own situated response to what has been ongoing identity politics in the autistic community, which echoes the identity politics I've encountered in other groups (mainly LGBTQQ groups back in the late 90s). I see identity politics as a kind of necessary step a movement goes through as it sorts itself (and its language) out. However, the movement of autistic people is kind of confusing and even more complicated -- rife with power politics -- because some of the claims aren't even being made by autistic people. The policing of who can call themselves autistic is so based within a medical model of illness and within a discourse of 'parent strife' that I feel the very act of trying to engage my own identity is like wandering into a sucking swamp full of mud-dwelling pirhanas.

Pardon the image.
I'll dwell no longer on the scariness of the prospect of my publishing this post.

This is who I am. I am many things. Many of them have nothing to do with autism.

I taught myself to read and yet I can have trouble processing (and therefore remembering) things when they are spoken to me instead of being written down.

I sometimes hit myself, or stim, when I leave an environment of high anxiety or when I've done something wrong.

I've also cut myself.
I've also banged my head over and over against things.
I've become non-verbal.

I was bullied.
I was abused, and this experience is interlaced with my experiences of non-verbalness and dissociation. And spent years trying to figure out feelings I didn't know how to articulate, and still struggle to figure out how to feel legitimate in my needs and feelings, and self-advocate.

I can talk to someone for a long time about how Foucault influenced the way I think about power.
But in my marriage I struggle with the pragmatics of everyday communication about emotions or what we are going to have for dinner.

I am measured, by IQ standards as superior in most areas, average in a few (and these feel like deficits)
But I don't really understand and get overwhelmed easily, I have trouble reading an analog clock, when someone explains something to me sometimes I don't understand it. Or I understand it and I can't respond. There are holes in my knowledge so wide that my intellectual peers tend to talk circles around me. (But then, I'm not exactly lamenting that I can't quote Dostoevsky).
I'm great at a lot of tech stuff. But I'm by no means someone who can write code because of object relations problems or something. But I have such extreme ability to pay attention to detail and to systematize the world that I often perform tasks more quickly, with greater accuracy, and more artistic flair than most people.

I forget to eat
I forget to bathe -- or have such intense sensory aversions to cold or dryness or my hair being staticky or wet or greasy -- that I end up paralyzed in a pit of being unable to self-care about anything. Even if this is brief, it is real.
I can fail to recognize that I have to use the bathroom, until it is very very urgent. I also have IBS. I walk a fine line at times, but I don't have accidents.

I identify more, often enough, with my non-verbal, or highly sensory-affected contemporaries. I identify with the things they write about their experience. Like Carly and Amy
I can feel I have less in common with people I could get lumped with because of some arbitrary DSM artifact.

I may exist on the other side of some line of "passing"-"not-passing" or presumed compentence/intelligence spectrum, but I do not see these as real lines, but ones imposed on people. The impositions don't serve us -- on either side.

But let me be clear. Needing to use AAC and not needing to use AAC makes a real difference in ones experience of the world. Needing to wear a diaper is a different experience than not needing to wear one. Self-harming sometimes is a different experience than constantly doing so -- but the reasons why aren't clear to many people -- but then reasons for self-harm aren't often understood. An attempt at self-regulation is but a guess, in line with Linehan's work married to Intense World Theory.

I don't know.
Sometimes, like today, I can feel lost and disorganized, and all these words, in text, on a page, and the fact that I might be able to get some things done at work, doesn't undermine the ways I do all of these things as an autistic person, with an auditory processing disorder, with sometimes very intense sensory experiences, with a limited pragmatic language ability, with a highly intense emotional world.

My heart breaks when people fight identity politics in autism
And forget what that we ALL deserve to fight for is respect and our own humanity.


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