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 

saying

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 

conversation

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 

makes 

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.

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.

And.
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.

Peace.

On Autistic, Mentally Ill, Godless Evil

I'm struck by how much dialogue and debate here (in the US, where I'm not originally from) spills into illogical and irresponsible use of religion, the constitution, and even the value of letting the real emotions of trauma *be*. Processing events of magnitude (even when they aren't on the news, even when they are and we aren't directly experiencing the trauma) is a process. All the stuff people are saying is necessary. It is heinous, what Huckabee said. But it was said because at the very least he, a person in power who has an audience to say these things publicly, said them, believes them, and then others agree. So it needed to be said and now it needs to be engaged with, and some engagement will change minds, a lot won't, and a lot of hurt will be dredged up. A lot of old wounds from very deep important philosophical debates emerge from tragedy. Fine. Do it.

But I'm very disturbed about how autism coming up as a "reason" and how the reaction of many autism people(?) (not so much self-advocates) are blaming mental illness. And people who have so called mental illnesses or are on psych mess or whatever, are not blaming autistic people, but either way, it's disturbing to me that people need these scapegoats in order to feel safer. Dehumanizing the criminal by lumping them in with the majority of non criminals who have that label, effectively dehumanizes all of us who have that label.

When a heinous thing happens its not about autism, mental illness, a lack of god. None of these things actually explain what a person experienced that led to this.

the best thing anyone can do, as uncomfortable as this is, is to process the fact that we are connected and process the contradiction of that connection as is it bound up with the individual decisions each person makes. Community and individual actions are inextricable. Do not attempt to render the trauma as good vs evil. what if those concepts were removed?

What if a broken system had less to do with the absence of god in them and more to do with the presence of god in them? What if the very reasons people are alienated from community and are suffering further is so bound up a dominant view of God/Satan/good/evil?

What if the way to deal with suffering is to go to it, not alienate it?
What if it were the case that it is only possible for a person to become separate from the web of community when the community breaks them off and convinces them (and they themselves choose to believe) that they don't deserve the caring and regard of humanity?

What happens when, instead of just being victim to a narrative of ones life in which they are a loser who doesn't measure up, a human being who has been traumatized by life and feels angry about that (for whatever reason, autism label, mental label, or other) -- what happens when that person instead chooses to not be a victim but has no outlet for anger?

Anyone in a vacuum can become distorted in thinking.
Germany was systematically cut off from the outside world, fed propaganda, and we Jews became a scapegoat for all kinds of problems, and genocide resulted.

Think about your own vacuums. Those distortions may be privilege in disguise. Or the seeds of your own suffering.

As uncomfortable as it is to process these traumatic events, it can't be done by the dehumanization of the perpetrator(s). It only allows the possibility for the same thing to repeat itself, because we fail over and over to understand the roots of suffering.

Sensory Issues

The abstract for Intense World syndrome is is so incredibly validating to me I just about cried.  I probably teared up. I don't think an abstract has ever made me cry before. The thought was, "finally".

It's not about fidgeting/repetitive behaviour/stimming/flapping/twirling/whatever.
It's not about lack of making eye contact.
It's not lacking emotional empathy.

In my estimation, based a lot on what autistic people have written about themselves, many of the common external signs of autism result from an overwhelmed sensory system.

Not all of autistic stuff is sensory processing, but I venture a guess that a lot of it is. And I venture to say that at least a few people who might sit in the camp of mourning the loss of Asperger's Syndrome might also argue that they aren't like the people who had an autism dx rather than an Aspergers dx. However I often identify strongly in the other direction.

- since autism 'lines' [of severity] can't be drawn around IQ, nor around functioning (google some critiques of the functioning trope to understand that), I propose those lines aren't really possible to draw in any meaningful way.

- sensory processing is a thing we all do, is a neurological and nervous system (or whole system) kind of thing. If a person has a divergent system for processing external information, so much of that is a 'fish in water' kind of experience. My sensory issues weren't at all apparent to me. Until I got tested by an audiologist and had a consult with an OT.

- this is purely speculative, but based on sensory experiences communicated by my peers who maybe also get labeled as more severe than me or whatever -- may other-verbal, or do more stim stuff or self-injury or have more meltdowns and in different ways than me -- that I would be doing those same things if my sensory integration issues had the volume turned up on them. In other words, I can handle some time in a grocery store. But for someone who doesn't handle that as well, I think much of that has to do with being more affected than me by the fluorescent lights or the noises or the smells, temperatures, etc. Even if the experiences aren't exactly the same, there is the same root at play. Sensory. Not behavioral.

- communication frustration is a huge part of why I may self-injure (severe or not, overt or covert), why I may yell, why I may fail to respond to the person I'm talking with. Feeling misunderstood and stymied in communication is so terribly frustrating. I can imagine that if I more frequently got into non-verbal spaces, or was always that way (because verbal speech production and cognitive understanding are not the same thing), I would be even MORE frustrated. I would be less understood. Fewer people would even be making the effort to listen. Especially if those communications weren't even verbal in the traditional way. (I could ASL as a legitimate Lternative to speech, but AAC is probably even more viable, and for in either case where motor skills affect the use of these, assistance with producing communication is a highly viable path to someone having agency with their voice)

- so. The world is a disorganized, highly intense place. What if the emotional empathy Rachel Cohen-Rottenberg talks about is so very present, but the cognitive production of an empathic response being interfered with (by internal sensory and communication challenges) as well as outside disempowerment) --

Then we are less broken than imagined.

and all those parents claiming that kids who are nonverbal and hitting themselves or whatever are so different than those of us who can write, or talk, or have a cogent argument that challenges their -- or rather discomfort with another way of being -- there is no possible chance of helping.

But if there is a way to understand about sensory issues and communication (organization, and the connection between nervous system integration and cognitive organization) -- it may be possible to address some of the side effects that allistic (non-autistic) people cite as non-empathy or the behaviors that manifest in a lack of social support for autistic people.

Having sensory integration issues and communication issues (that are tied to those sensory issues) is difficult for me, and if the volume were turned up on those issues I think I would have the manifestations of what DSM V calls more severe/lower functioning.

Therefore, the DSM change makes sense, insofar as it has included sensory issues in the realm of ASD. That connection was sorely missing before. I think we need to explore (and research the heck out of) what these sensory systems are doing in autism, how these sensory differences can have multiple causation factors including environmental and genetic, and take those of us with perhaps less severe manifestations of sensory issues and challenge/push the sensory system, in research settings, and study what happens. Study what that does to cognitive processing. Understand better how gut and immunity and cognition and communication and sensory integration aren't all separate.

This post is long and not well written or cited or linked or anything. Don't shoot me (that's what the next post will be about). It's just a mash of my thoughts on why its okay there's no Aspergers anymore. Those people who didn't get the privilege of an Aspergers label? They have been more disadvantaged than me, in a lot of ways because of systemic abuse and other barriers, but I'm not so different from them. I can feel that in all the circuits of my highly empathic nervous system.

On Overload and Retail (Part 2?)

I wrote here a long while ago, and it was about my job. Here's another post about my job. I'm doing this instead of other things I guess I need to do, like buying cat food and cleaning up, but maybe I just needed a down day after everything going on the last few days (work, informational interview about a new career, other important conversations with my husband..)

So, I work retail. I mainly do cashiering, but I also do sales and a bit of stocking, or I work in shipping and receiving. The majority of my days at work are in front of customers, however, servicing the line of people checking out.

It's become an increasing issue for me that when I leave work and get home after a full 8 hour day of Customer Service (CS), I am very overloaded. There are some mitigating factors, like if I've remembered to take anxiety med, if I have remembered my brimmed hat (for fluorescent lights), and how well I've eaten. Food plays a big part in how I function. So these factors can amplify (or not) the experiences I describe below.

I'm in general, not a very verbal person. Some people are surprised by that, because I can certainly have modes where I talk and talk and talk. The talkative mode(s) are often due to high anxiety or even sense of ungroundedness which leads me to think a bunch of things at once and have a hard time focusing. In these states I can often not do a very good job of matching the mood around me; so people might be stressed, or subdued, or whatever, and I'm bouncing happy. I can imagine this being annoying at times.

So as a not particularly verbal person, and one who, frankly, is depressive in general, when I work my job I have to put a great deal of effort towards the task of serving customers.

Smile

Sometimes I just don't feel like smiling. I can watch co-workers do their job without any particular amount of projected joy, even with some degree of outward disinterest; but I can't. If I'm not putting forward that positive, energetic persona, I feel utterly incapable at my job.

So I have something akin to a verbal smile. It's not that I'm always smiling outright, but there's this stance of smiling in the process of talking to someone that is possible even if I feel like crawling into a corner and covering myself with a blanket. It is something I picked up over time, I think, from listening to other people speak. I have learned it's possible to make certain inflections sound genuine even if what I feel inside is completely opposed to the happy, energetic persona I have to project.

Stick to the Script

"Hi, how are you today?"

"Did you find everything okay?"

"Are you a member?" "Okay, great, can I have your phone number?"

"Nick?" "Thank you" 

"Your total is 375.69"

"Is that debit or credit?"

"May I see the card to verify your signature?"

"Just hit the green button to confirm the amount"

"Thank you, have a great day"

"Thank you for calling _____, Karen speaking, how may I direct your call?"

I have scripts for all the different situations -- returns, selling memberships, special orders, phone calls, complaints, inquiries, bartering, etc.

Overload Heaven

It's hard to describe what it's like in the fifth hour of the day, after doing this with so many people. I would love to know how many transactions I process on an average day at work. how many times I have to go through the same thing.

Then, on a Saturday, it's not just the fact that the volume of customers goes up and I basically go non-stop (and have to turn someone back to the line in order to take breaks) -- the level of noise in the store goes up TENFOLD.  The number of cashiers doubles at least. During a sale, moreso. The level of noise affects my diagnosed Central Auditory Processing Disorder. I have to work harder to hear through the noise, and so my nervous system is on overdrive. So on a quiet Monday, I can basically deal with the radio background noise, and a bit of other ambient noise, sometimes another cashier's voice, but only one. On a Saturday, I may have a customer and cashier pair speaking on either side of me, the person I have to hear, and then a hundred other voices and children crying, bicycle bells dinging (by children), paper bags crinkling, beeps, printers printing, the smells of perfume and garlic and that new clothing smell. I do my best to dress comfortably so that I don't feel my clothes all day, and it took me a long time to find good shoes so that my body wouldn't hurt after a day on my feet.

Some of these things affect everyone, in the sense that it's always harder to hear in a noisy environment. I wish I could simulate what it sounds like to me when English turns into a mess (I can't hear words well or hang onto the words) because of my auditory issues.

In many other circumstances besides work, I think the equivalent level of stress on my system would shut me down. If I was in a noisy environment like that for hours on end with my husband and some other people, I probably would at some point just say I need to leave. But here I don't, or I can't, and so I stick it out. An interesting thing happens. I kind of go on autopilot, and push through the overload. 

I still use my scripts, and everything goes fine. But I feel a pressure at the front of my skull. I feel a fatigue underneath the verbal smile, and I am less and less inclined to do anything but the bare minimum of what I have to say. If there are enough other cashiers, I will find a task to do that doesn't involve talking, like go take a full rack of hangers back to the warehouse. Or I'll admit to even just ducking into the back room and turning my head upside down (when this happens), taking long breaths, and just hiding for a few moments.

Verbal Load

By the time I get home from work, I'm not in any shape to talk to my husband. I need a serious break from listening and speaking. The listening may be just as important as the speaking part, here. This really affects our relationship in negative ways; if we end up getting into something and I'm still trying to recover from the fallout of working, I may invariably be unresponsive, or just not really engage, or worse, be irritable and end up having a fight because I can't really glean all the subtext of what is happening in our interaction. CS is straightforward; and even if someone is difficult or especially taxing, chances are I won't see them again, or only seldom. 

In my marriage, it's important to me to be there with my husband but I feel like I've spent all my spoons. This happens over and over, and it's taking its toll on our relationship.

So while I'm lauded at work for being great, it comes at a price. A kind of invisible price.

I've considered asking for an accommodation like one extra ten minute break only if needed (Breaks PRN!), but haven't been able to really convince myself that this would be okay. Or that if I really need it.

I've written about accommodations before; it's a tricky thing, because, even like things with the hat, invisible disabilities mean that other people don't necessarily understand the reason for the accommodation and can perceive preferential treatment, and there's no graceful way of making that happen without "coming out" over and over, or being horribly cryptic about "medical reasons". 

This video is a decent sensory comparison for how it can feel.

emerging

So, I figure that I'm slowly coming out of, not a closet, exactly, but out of some silence that I've been friends with all my life. There's a safety in silence. There's a safety in never getting angry (on the outside), but it eventually fucks over the psyche in a way I can't live with anymore.

So every day, when I go out in the world and figure out some way to be, it's getting less and less acceptable to use silence as a veil, silence as a foil, silence as a way to stay on the sidelines and avoid getting egged.

I started with being open at work. With friends. Posting stuff that subtly or not, indicates, I care about this autism stuff. I've followed and made friends with people who are being very vocal about their views. They are views I mostly agree with.

I'm seeing my friends get egged. They are getting hurt. It's not only okay to be autistic, it's like, a legitimate voice. Not more legitimate on the circumference of the world or astrophysics or whatever. But on autism, just as legitimate. In fact MORE legitimate on being autistic. More authoritative. Really! (And apparently, what font we choose makes a difference)

Because rights are being violated, because the discourse continues to be controlled by people who just don't understand the violence they're doing, and because there is so. much. suffering. to bear witness to and speak to and rail against and try to make a better world full of understanding and kumbaya.

I'm a full-fledged idealist. My heart breaks constantly. I believe in love. Fine.
I may never be a badass but I'm going to aspire to be one.

Because I want to and need to speak truth to oppression
I want to and need to find my people and support them in their work
And I want to step out of silence and into strong voice full of all that boils deep inside me to speak about suffering, understanding, and change.

Peace,
K

Just an update. Overload.

Hm. Haven't postedin a while. I'm typing from mobile because I have put myself to bed early. I'm overloaded. We went to a movie tonight at the IMAX and waiting in line was a sensory nightmare. I almost considered asking to use the alternate (accessible) entrance because it would be less sensory overload. But I stuck it out. The thing about sticking it out though is that I pay for it later. I've been kind of sad lately because of being more aware of my difficulties connecting with others. Like, kind of lonely. Kind of longing for better connections and an easier time making plans. I've also been struggling a fair bit with housework. Two things I'm thinking about pursuing. One is neuropsych testing. I want to find out about learning disabilities we suspect are there. And also maybe also try to get an EEG to see if I'm having some kind of seizure activity. But positives include: doing a lot of physical exercise. I'm kind of banged up from backpacking, rock climbing, and canoeing but it all feels really good for my body. That's an update. Nothing deep really but that's okay :)