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 :)

The Challenge of Social Accommodations in the Workplace

The Autism Women's Network posted this link today citing the stat that two thirds of autistic adults are unemployed and underemployed.

 I love my job in retail; I'm in a supportive environment and I enjoy working with my colleagues and with customers. There are challenges for me there but I have stayed there for a year and a half because it works for me in some ways. For instance the culture there supports work life balance, encourages my outdoor activities, but it also has a schedule that changes week to week (ie no routine) and it pays much less than my skills and intelligence would imply I could be making. So with all due respect and love to my job and the people there, I'm seriously underemployed.

 It's a mixed bag; I find the job to be less stimulating intellectually, and to be more challenging on my sensory systems and social skills than some full-time desk jobs might be. It is both less challenging on my skills (though a side effect of this is I've become a kind of go-to resource for operational concerns because I have such a strength for detail), but very challenging in terms of my ability to socialize well with co-workers and customers.

I can sometimes develop a very easy and positive rapport with people, but other times it's all awkwardness and lack of eye contact. I know it matters less with customers; some cashiers are friendly and others less so, and any given interaction with a customer averages 60 seconds or so, which means its mostly low impact if I'm benignly weird. Less so with co-workers. It is hard to do small talk; break room conversations can be taxing, leaving me feeling like I haven't had a break. Navigating the scheduling, interpersonal and teamwork aspects of the job can feel like walking a tightrope; I feel like I always have enough social capital, because I work so hard to be positive, and liked, and not make mistakes. This takes a lot of energy.

So that article linked above is capturing something about my life. One sentence in that article captured my attention enough to write this post, however; and it is right in line with how daunted I feel at the prospect of becoming less under-employed. The study found that social skills training was at the top of the list for both adults and care-givers. It presents the un(der)employment stat as follows:

In addition, it was found that more than two-thirds of adults with autism are unemployed or underemployed, when in fact these individuals are fully capable of working, but lack the social skills to be able to hold or find employment. 

Other autists have some great writing on the social model of disability as it relates to autism. I encourage you to seek that out. I am thinking about it though, and it seems that there are real barriers to full employment that can't be explained using the deficit model.

For one, jobs aren't very flexible when it comes to having a neurological difference that can result in uneven and inconsistent skills. Until a (9-5) job is capable of really accommodating an invisible disability that is inconsistently present, it will be inaccessible to many.

Some days/weeks I have no problem talking on the phone, but sometimes it's a challenge. Sometimes I'm capable of functioning well in time management, other times I'd need support. I'd need discrete alone times, more things in writing, the ability to work from home... Many many things could be accommodated. Other things seems trickier. One can't, for instance, reschedule meetings last minute frequently, without some social or political repercussions. One can't necessarily disappear for a week. Even this, however -- many employees have kids, and those kids get sick, or whatever, and work needs to accommodate these things. It's even in law In some places that if one has a sick relative, one can get paid leave to take care of them. There is also short-term disability when a person themselves needs time off. However none of these actually seem to fit the situation of sensory overload, for instance. It most closely is like the last minute doctors appointment for a child that makes you leave work early. Except in this case there is no "legitimate" reason. The reason it isn't legitimate is that people don't understand sensory overload. Sensory overload may be unusual, but it's understandable, and the lack of understanding has nothing to do with a deficit in the person experiencing it.

In my experience in both graduate school and employment, the question of social accommodation is the hardest one to answer. As much as we want to accommodate and educate, the overriding of social convention is a gargantuan challenge, and this anthroplogophile asks, for example, what aspects of human non-verbal interaction are cultural and amenable, and what might be more codified into our instincts (putting aside the question, of course, of whether we even have purely animal instincts anymore). If Sally doesn't make eye contact and Ann may be offended or not trust Sally, in the social model, Ann needs to be assisted in understanding that Sally is trustworthy, and there are good (non-derisive) reasons for not looking her in the eye. It shouldn't matter how ingrained someone might feel about lack of eye-contact = trustworthiness (and in fact, troll TED for a great talk on how liars make more eye contact than usual), they should be able to give a person making no eye contact, the benefit of the doubt, especially when they are told that eye contact is challenging.

Eye contact does more than just convey a person's intent though; eye contact allows me to gain more non-verbal information (secret: I'm often not looking at eyes, which is both easier and I'm told more acceptable than direct eye contact anyway). So I gain something by working on my eye-contact-with-people's-faces skill as well as monitoring-my-own-face skill. There's no question about that. But unless I get some leeway and understanding as I become more effective, I'll be punished out of the social game long before I gain the skills.

I'm sorry this next point/thought is less rigorous and well formed than I'd like... One thought/connection I've had recently is delicate but relevant to autism. I think. It's not an analogy.

Some individuals with motor control differences can sometimes face discrimination because typical people seem to rely on body signals those individuals can't give in the same way. What then happens is the typical person might express derision, mistrust or dismiss the person with atypical motor function, but more often, I suspect, engage in a very subtle, possibly unconscious withdrawal of social contact/support because their neurotypical instinct is that the untypical person can't be read easily. The typical person possibly feels a lack of control. They need to do extra work to get information they usually get from all the culturally codified mannerisms and non-verbals most of us take for granted.

It is a privilege to be relaxed and confident that one's way of gesticulating, holding a facial expression, or using one's eyes will be received in congruence with the meaning of those expressions. When one's expressiveness is not received in congruence with what is meant, it is a real disadvantage.

A difference between having motor control a-typicality and say, being labelled with autistic social skills, is that one is thought to be unchangeable and the other is thought to be amenable to social skills training. Do we really know this? This issue is so complex. One thing I do know; I am not lazy because my facial expression doesn't match how I intend to present my thoughts/feelings. In any case, as an autistic person I don't have the privilege of just relaxing and assuming my non-verbals will be received in congruity with how I intend them.

I have made this connection as well to the immigrant experience in some cases. If you come from a place where some of the non-verbals are different (how you nod yes or maybe, for example), you might be nodding yes and natives of your new country think you are indifferent to them. I've witnessed this kind of difference wreaking havoc with workplace relationships.

Non-verbal differences can be a kind of invisible barrier that MAY require the non-typical person to understand and gain skills (not always), but definitely requires typical people to do some work to question their own expectations and learn to read a person differently. To live with their discomfort at not getting all the information they expect from a person's body, assuming good intentions, and providing feedback, in non-derisive ways, how they are reading things as they are. And be open to a different interpretation than their initial spit-second reaction. To engage in meta-communication, like 'This is what I thought you meant, am I right? Please correct me if I'm wrong...' Until both parties can work on that two way meta-communication, there will be social barriers in the workplace (and well, everywhere!).

One can't circumvent all bad reactions to unusual needs, or unordinary social gaffes, which ultimately hurt ones career. The higher level one goes in careers, the more those can have dire consequence. In my experience it has been much healthier for me to work below my potential where those failures happen with less consequence to my livelihood. Unfortunately, this leads to depression and social isolation. I am, indeed, angry at myself for never taking the risk to do something meaningful, get outside my comfort zone, risk failure for the bigger rewards. Except for, well, I'm always living outside my comfort zone.

And in case you aren't familiar with the Spoon Theory of Illness/Disability, read it.