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.

The Crossroads is a Field

I knew a guy growing up who was kind of on the margins. I remember being friends with him but he and I didn't particularly stick together, if I remember correctly. I met him one day years later; we happened to take the same public bus home from school. So we started chatting, and both got off the bus at the same stop, and kept talking. The way home from the bus started off through a field of weeds. The sidewalk ended and he began to trudge through the thickest part of the grass. Of course he'd done this trek many times, but I pointed out the well-worn trail made by thousands of feet. His response: "I prefer to make my own path".


That response stuck with me. 


I've been in a bit of hibernation. I have let this blog go fallow. I stopped tweeting. I suppose this is in keeping with the deep work I'm currently doing. I'm in DBT to work on skills I believe will help me. I am tapering off medication that I have been taking since 2005 and which has dulled my senses and my feelings. I am mourning lost potential, ruminating on current challenges, and so uncertain of my future that I feel I could grind my teeth off in a single fit of war with the unknown. 


[I think I've been reticent to post blogs and tweets and even facebook updates because I feel so opposite of "hey look at me!" I don't want to be seen, I don't want to stick my fingers into the jarring machine of other peoples' attention. As the holidays approach, which I associate with one of my first conscious experiences of being marginal (Christmas), people are all wanting to connect; have potlucks, have parties, send cards; and I experience more soundly how much I don't feel in sync with what everyone else is presumably craving: togetherness and chestnuts roasting on an open fire. My winter holiday will be in mid-January, and I will retreat to the mountains, hike deep into the woods where there is no running water and no people.]


In the midst of all this holiday alienation and personal exegesis, my dear friend-I-met-only-once-in-person-but-we've-known-each-other's-souls-like-forever, Sharon da Vanport, shared Rachel Cohen-Rottenberg's Dec 2 post. Her writing, as always, is such a strong reflection of what I'm struggling with, despairing in, yearning for. 


The path of least resistance seems so often the path of conformity. It's supposedly easier to fit in and ascribe to common notions of power and prestige. For those not living on the margins, I guess that could be true. But if my very being is on the margins, the path of least resistance isn't conformity. To take the path of conformity means to contort myself into ways of being that don't work. It means disavowing my real experience in favor of an illusion that would make other people more comfortable. 


I will never feel at home in that world.


Rachel writes, "The only time I didn’t feel on the margins was when I happened to cross paths for awhile with other people on the margins. Then the world felt like home". I have also had this experience. It wasn't like those people had to be marginal in ways that I was marginal. It just had to be a mutual recognition of how, whether that experience made us sad or scared or angry, meek (as I was) or hard around the edges (as I was often drawn to), being marginalized meant that we shared a knowledge of each other that made us feel less alone. We found power together, in mutual recognition of that experience -- of standing outside the collective illusion that everyone else shared. 


I'm less concerned with how false the collective illusion is. In some sense it isn't an illusion, and it isn't as collective as I'd imagined it. It is, however, a well-worn path. It isn't questioned. It becomes Reality because of some collective agreement, and the margins become a blurry no-man's land, they become unknowable and the people in the margins become unknowable, their silence being a function of living outside the collective dream.


Choosing to walk the path of marginal means working to unblur those lines, and in doing so, point out that the center isn't really the center, and the margins are all over the place.


Rachel is doing something so important that it prompted me to post myself. When I read her work I feel my own potentiality stirring. I see her blazing trails and I feel compelled to speak because the more people who stop being silent the more the voices from the margins speak, the more we create a world in which we exist, the more the world isn't a simple place consisting of "inside" and "outside", of center and margin, but it becomes a multi-faceted world of many margins. So many margins that the picture is beautiful.

I have always known who my people are, and I’ve fled from them, afraid that if I threw in my lot with them, I’d have to give up this mad craving for acceptance, for approval, for the mythic safety of “normalcy,” for the dream of what people once led me to believe was my destiny. And that fear has cost me dearly — physically, mentally, ethically, and spiritually. I’m only beginning to understand just how dearly.

It’s an awful thing to be at war with oneself. It’s an awful thing to keep fleeing and arriving at the same place, over and over. I can’t do it anymore. I won’t do it anymore.
There is no shame in being on the margins. There is only shame in believing that I am too important to be there.  -- Rachel Cohen-Rottenberg

Rachel inspired me to look up some Audre Lorde, who was the first (along with Ani Difranco) to teach me how much power is possible with poetry and how much damage fear and silence can make, and how many people, when I reach into that darkness, are there waiting to hold my hand.

Possibility is neither forever nor instant. It is also not easy to sustain belief in its efficacy. We can sometimes work long and hard to establish one beachhead of real resistance to the deaths we are expected to live, only to have that beachhead assaulted or threatened by canards we have been socialized to fear, or by the withdrawal of those approvals that we have been warned to seek for safety. We see ourselves diminished or softened by the falsely benign accusations of childishness, of non-universality, of self-centeredness, of sensuality. And who asks the question: am I altering your aura, your ideas, your dreams, or am I merely moving you to temporary and reactive action? (Even the latter is no mean task, but one that must be rather seen within the context of a true alteration of the texture of our lives.)

The white fathers told us, I think therefore I am; and the black mothers in each of us-the poet-whispers in our dreams, I feel therefore I can be free. -- Audre Lorde

If you are on the margin, however silent or small or alone you feel, know that you are really none of these.


There are voices in the margins whispering poetry. It is the verse of possibility on the verge of the truth that none of us is really free, or powerful, or loved, until we all are.

just breathe

I'm kind of overwhelmed. I'm working a lot. This is good, but it means I'm neglecting a whole lot of other things, like basic housework. Cooking is challenging me because I don't know what to make with stuff  I have. I feel agoraphobic to go to the store for milk or whatever. I have multiple things that are just overdue, phonecalls I need to return, stuff like that.

All I wanna do is sleep, hide, escape. That won't help with getting anything done.

Then, yesterday someone said something to me at work that was upsetting. But as usual, I didn't have any reaction at the time, that indicated at all that what the person said was not okay. So now I'm left with the words echoing in my head, and no way to be able to say that it wasn't okay.

So I'll just keep breathing, and maybe find the strength/focus/will/courage to get shit done and keep on going.

Disablism Among Autists

I'm caught between notions of inclusion/neurodiversity and notions of how difficult it is to change some responses to socially untypical behaviors.

Or to put it less delicately: Some people are hard to be around. I can be hard to be around. The reasons for this are so numerous it's useless to even try. This being 'hard to be around', at my core, is not okay. It's not okay to feel frustrated about and/or avoid a person.

There are people who I have a hard time with. Some of them even want to be my friend. But so, how do I respect those limits but not just be like every other asshole who doesn't want to be around person X?

There are so many hurting and lonely people, who, it seems to me, could maybe change some things but it's not like they're assholes they're just missing some part, and maybe they don't need to change, they certainly don't have to change, but I can see that something about them is making a giant barrier between them and other people. Like, with body odor -- people avoid a person with body odor, but it's so delicate a topic and since no one is close enough to have a trust-bond to tell them, they just never get told.

There are so many versions of body odor, many of them behavioral, and I am at a loss as to how to deal with my psychic pain when I find myself recoiling and unable to tell the person why I am doing so. It's not like I owe them a reason, but I sense that for some people, whether ignorant, mildly aware, or fully aware of what distances them from others, I know there is not enough trust between us for me to share even an inkling of what I'm thinking about them. I feel I'm a bad person. I know I'm not, but I can't figure out how to deal with my discomfort.

As much as this is torturing me, I'm so aware of how problematic the terms high and low and functioning are, and there are people, other autists, who I associate with that use those terms, and in ways where they are saying they want to have social experiences with some kinds of persons and not others, and this feels wrong. But I know what they mean. And in all of that I glimpse the broader problem in a new way, how typical people can justify disablism, justify trying to change/cure/eliminate autism and/or not accept behaviors. That we're all just trying to control the kinds of social experiences we have.

I get really unhappy when I serve rude, impatient people at the cash register. I want to shake them and say, 'Don't you realize, that the more of a crank you are to me, the less you treat me like a person, the more you go around treating every service person you encounter the way you treat me, YOU ARE REINFORCING your perception of shitty customer service. You will find more and more opportunities to treat other people like shit, bully them, complain about them, and on and on, and you will feel no better for it. No. In fact, your suffering is the only constant in that equation."

It's kind of like that.

I know some autists who are direct with other autists about the behaviors that they find unacceptable. I can't do this, and I somewhat admire it but I can't decide if it's rude at times. Maybe it can be. For example, "You are staring at me and that is making me uncomfortable. [Please go away]."

Maybe it's the 'go away' that spills into rudeness. I just say nothing, however, which starts to make it difficult for me to be in spaces where I inevitably end up in overload because of so much intrusion (like staring, or pressing at a topic that I'm politely trying to end, or not getting clear cues like 'I need to leave').

I bet this is way disorganized. I need to sleep, I have a big day tomorrow before I head to a three day retreat. But I felt I wanted to share. I am really chewing on all of this, and to top it all, my workplace is doing diversity and inclusion training in the upcoming month. Which I'm pleased about. And also painfully aware that I walk a fine line every day. I'm not 'in the closet' about autism at work, but I don't really talk about it either. I am constantly on the verge of sharing more publicly. I kind of said something about it offhand a little while ago, in the breakroom. It was all fine, but I fear if I was being treated weirdly because of that information, I wouldn't know it.

And in the realm of my own awkward or socially difficult behavior, aside from one person, no one is really giving me any feedback on what I might change. So I remain painfully unaware of, partially awkwardly in control of, and fully immersed in that which is my autism.

(In)Voluntary Silly Voices

It was pointed out to me (not recently) that I have a surreal silly voice that I use sometimes. I've also been told that this voice is really grating/annoying, and that it can have the effect of disconnecting me from the people around me, and possibly cause them to take me less seriously.

I noticed that I used it quite involuntarily yesterday at work, in front of a lot of my co-workers. I was kind of embarrassed, in part because no one laughed, no one else was really talking, and so it probably stuck out quite a bit. I'm not sure how it received, and whether the person who brought the silly voice to my attention is right or wrong generically about how annoying and disconnecting it is for other people (besides them). I know that my readers/responders tend to be more supportive than not, and might say 'feck 'im and love the way you are,' but understanding this behavior and when it may be inappropriate is important to me. I don't really want to alienate myself. I agree that the effect it has, especially in situations when I need to be grown up or professional or just not stick out as odd, is alienating and can seriously affect negatively how people see me.

I love my sense of humour. I love being silly, saying wry things, pretend or surreal things, things I don't actually believe for comic effect, and since I can't do deadpan, I'll tend to go the other way and be totally silly about what I'm trying to be funny about. I don't want to shut down feeling amusement at my thoughts that are amusing. So I'd like to partially transform my behavior (as opposed to completely), rather than squelch the naturally good things about this phenomenon.

Since I can't/won't publish an actual sound clip, you'll sort of have to take my word for it. It's higher than my normal voice. It's kind of like a cartoon character. It happens more often, I think, when I'm nervous, but also [in combination with] being kind of elated, happy, or just in a good mood. 

I'm trying to think of examples of what I'd say in this silly voice. 

"Uhoh, burned the rice again. Silly rice cooker"

"Oh, but Ms Palin is the smartest person in the world."

"Look, it's a monkey!"

"But my brain! It's melting...."

I suppose when I quote movies (which I don't do often enough for it to be a stereotyped feature of my speech), I use the silly voice.

When I say something I don't really mean, but it is ironic or pretend, I use the silly voice.

When I am being sort of childish, but mocking myself in doing so, I use the silly voice.

So. First step to changing anything, right, is awareness. After that, compassionate modifying, maybe by not using the silly voice in certain situations, like work, and if I find myself doing it, slipping up as it were, I can not berate myself about it. Maybe I'll find out it is really truly involuntary. But maybe it's possible to change it. Maybe, like at work, I have to actively not share some humourous thoughts I have, even if that means I'm appearing a tad too one-dimensional. I'm not sure. 

I suppose, boiling it down, this is about NT humor and my odd aspie kind of humor, something I did develop from interacting with my (undiagnosed aspie) family, and it's something that I enjoy. It's not something everyone will understand, and I'm better off being seen as odd but enjoying life than squelching what brings me joy. 

[Deity] knows I spend enough time in hand-wringing anxiety, depression and pain.

Is this thing on?

I haven't been posting because I haven't been feeling much self-acceptance. In general, this means I have a hard time being in the world. I don't feel like that is the full reason for much of the stuff below, but it's part of it. As much as I want to change some of this because it increases my isolation, I can't seem to change it, and letting go of trying to change it just makes me feel more isolated.

• I feel less verbal. It can be very hard to talk. Hair trigger frustration. Incomplete sentences. Can I just go hide and rock now?
• Making eye contact is harder. Doing it means a rush of adrenaline. It's too intense. Mostly I look everywhere but at a person.
• High anxiety making me silly.

Don't get me wrong, I like myself. I'm just having a hard time with the involuntary stuff that makes it difficult to connect with others. 

On Autistic Space

I'm not a hater, a (autistic) segregationist, a person who is very bitter from years of being misunderstood.
However, current happenings on about.com (see blog commentary about it here: http://theautisticme.blogspot.com/2011/08/writing-about-autism-not-for-autistic.html)
where posts by autistic people were taken down because of hateful comments, makes me ever more desiring of a number of autistic only spaces, or spaces where the autistic voices are privileged. I really appreciated Stuart Duncan's post http://www.stuartduncan.name/autism/when-autistics-write-about-autism/ because as a parent, he takes the stance that feels the most supportive, accepting, and advocating for us. I still reel about the hate, the sensorship, the silencing of autistic voices because of such bad behavior on the part of non-autistic people.

I belong to a couple of online email groups on yahoo and google, for ASD or sensory processing disorder (SPD). One, for example, is an adult SPD forum where many people are sharing their self-discovery around this, and the challenges of getting adult occupational therapy when most therapists only treat kids. Every once in a while a parent becomes active on the list, and starts asking questions about their child (whatever the age), and I just feel like quitting. I've tried to raise the fact that there are PLENTY of parent support forums out there, but most other people seem to think it'd be wrong to exclude non-autistic/SPD people. I have no trouble if parents want to read forums where adults talk about stuff, because they can learn a tremendous amount from people who are actually experiencing autism/SPD. But I don't feel it's the place to ask questions, parenting advice, stuff like that. It feels at best intrusive, and at worst, exploitative.

It's not about hate, in my mind. I just really want a space where our voices don't seem threatened, even when it's well meaning parents trying to glean insight into their children. It seems harmless, but for people like me who have a hard time anyway being totally open, I could really use a space where it's clear that autistic voices are not ever going to be threatened. (notice that here, I am creating this space so it's really autistic space).

That's wishful thinking. I know that somehow. But I can still state my ideal world, maybe someday I'll find that space.

 Autreat is an example, and really I need to make an effort to go next year. It's just hard to travel that distance, with cost etc. But it's the only one I can think of that's really autistic space, and deliberately so.