(in)Visible Spectrum

The Challenge of Social Accommodations in the Workplace

2012-01-29T10:01:00.002-05:00

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

2011-12-13T11:44:00.003-05:00

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

2011-09-25T10:58:00.001-04:00

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

2011-09-17T22:53:00.001-04:00

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

2011-09-03T09:25:00.002-04:00

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?

2011-08-31T09:26:00.000-04:00

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

2011-08-14T10:47:00.002-04:00

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.

feeling too much

2011-04-07T12:11:00.000-04:00

I've thought a lot about how much I feel. It's a lot. It's overwhelming.
While I think I lack communication skills to demonstrate empathy in a typical way, I think it's partly because I get so overwhelmed by feeling what's happening in a room, with another person, even an email interaction. I feel blocked, or choked up with words. I wish telepathy existed because maybe then people would *know* what I so desperately struggle to communicate.

My husband's father died this week. We flew down to visit him in his final days. It was very tough -- it'd be tough anyway, but there were a lot of strong emotions because of J's difficult relationship with his father (due in no small part to a stepmother who didn't want anything to do with J -- jeez, don't get with a man who has a kid then). Anyway it's not my stuff to process, but I can't help but feel how much J is hurting, and while I know that J needs words of comfort I tend toward the non-verbal because with my body I can comfort better than with words.

Messy thoughts. I gotta go lay down. We might've both caught norovirus somewhere in our travels. :(

social vs socially awkward

2011-03-29T12:07:00.000-04:00

The scope of this post is mainly about employment and Aspergers.

The Social Aspie kind of breaks the stereotype, but oh well; I think many people on the spectrum (maybe all of us) actually do want to connect with people, it's just difficult. I think there's a difference between being social and being socially awkward. And there's also a difference between being social and being extroverted. I'm an introvert. But I care deeply about people and I want to connect with them. I just have trouble doing so.

Employment can be tricky. Barbara Bissonnette of Forward Motion sent out her Aspergers and NLD newsletter today and it was about how only about 20% of skills that count in the workplace are hard skills and 80% are the interpersonal soft skills that help us get along and get things done in the workplace. Temple Grandin, among others, cites certain jobs as better for those on the spectrum; one of the jobs usually on the "not great for spectrumites" list is retail/cashiering.

While I tend to agree, I work in retail and can share some of the positive things about my experience. I never thought I would be good in a retail setting. I briefly worked at a jewelery store (one of those cheap jewelery franchises), and I hated it; I didn't like interacting with the women and teens who came into the store. I found processing credit card transactions stressful, and there were so many little things to try and keep clean. I've never been a stylish person, so I couldn't get excited about fashion accessories. It was horrid, and I lasted three months.

Aside from another stint in a department store restaurant where I worked as a cook behind the scenes, I've stuck mainly to office temping and factory work. I enjoyed the factory because it was repetitive detail-oriented work and there was no interacting with the public; I could wear comfortable clothing and a smock.

When I moved to Boston, I couldn't work for a while. Once I could, I considered going to a temp agency to work in corporate office settings but the more I thought about it, I realized that I really didn't like that environment. The office politics always felt too intense for me; I had to wear clothing that was uncomfortable, and I just felt like I didn't fit there.

One day I found myself at a outdoor gear retailer and on a whim, inquired about job opportunities. I love backpacking, hiking, cycling and kayaking, and I thought this might be a good place. I got hired there. It's on the Fortune 100 Best Companies to Work For. Their benefits are great, and it's a good work culture; the people who work there are generally passionate about the outdoors, and just all-round good people. It's not your average retail sales job.

I work as a cashier. Cashiering is challenging, and I think people on the spectrum are potentially challenged by this type of job in a number of ways, and maybe my experience isn't really representative of anyone else, but I figure it's worth sharing...

The Challenges
- The job involves a degree of multitasking that is challenging.
- The environment can be noisy and chaotic at times. Enter screaming baby.
- Difficult customers/conflict can be really challenging
- There are many complicated things to remember/learn about operating the cash register, and policies/procedures that, while documented, need to be applied appropriately.

Suitable Aspects
Good for someone detail-oriented and who is good at being accurate. I'm meticulous about doing the job properly, but it's made clear to us that most any mistakes can basically be undone, and we're not punished for making them, we get corrected and it's a learning opportunity.

This is key -- there is a kind of prescribed formula for interacting, a role if you will, which can make this less stressful than an open-ended interaction like in an office. Effective cashiering kind of involves guiding a transaction from start to finish; Greeting, ringing, providing information (like a particular discount is being applied here, etc), and finishing the transaction by taking payment, and a farewell greeting (Have a good day!). In other words, there is a basic script that one can follow, which helps reduce the stress of the interaction.

Benefits
There are some things about customer service that I really feel have benefited me. A few of these may be specific to the company I work for, perhaps, but are still relevant in a broader way.

I have an employer who supports diversity in the workplace, and I have an accommodation plan with them. I provided a letter from my doctor and they have worked with me to identify areas that I need support in - for instance, there is one cash register by the door that is supposed to be staffed at all times, but it is more challenging because people are always approaching that end cashier to ask questions, so it requires more multitasking. I have an accommodation that I don't work that register, because when I try to do that one I make mistakes when I normally don't make mistakes. I get overloaded and stressed, and my employer is fine with having me manage this by avoiding that register.

I have the opportunity to interact with a large number of people in one day, but within parameters that I can handle (because of the script, or prescribed role I can take). Now that I am fairly comfortable with the basics of taking payment for someone's purchase, I can interact with them to the degree I feel comfortable. If I'm more overloaded that day, I can simply ring stuff up and say only what I need to, but if I feel more social I can ask them questions about their upcoming backpacking trip or vacation, or tell them about a piece of gear they are buying that I have experience with.

When conflict arises, like if a customer is complaining or is asking for something I don't know how to handle, I have supportive managers I can ask for help. They are always willing to answer my questions. The return policy at this store is very liberal, and I generally don't have to say no -- this makes the job much more enjoyable. I am given all kinds of tools to give great customer service, and I rarely have a customer leave me feeling dissatisfied.

I can practice being friendly and receptive; I notice, for instance that when I make eye contact with the customer, the interaction is much more positive and friendly. It's really damn hard to do, but cashiering offers a low-stakes way to practice getting used to doing it. My job involves a tiny bit of sales, but there's no pressure with it, and I find that when I apply more or less effort I get results. This has been a great growth experience, and one that offsets my experience at that crappy fashion chain.

I get to experience interacting with ALL kinds of people. I meet laid-back Californian climbing buffs, bratty moms with their bratty teens, controlling middle-aged women who are addicted to shopping, scruffy city public works employees, police officers, military base personnel, extremely rich Boston executives who are weekend warriors, old hippie couples who are getting back into hiking, and lots of parents buying their spoiled kids The North Face Denali jackets. All kinds. Nice people, rude people, controlling people, prickly people, crabby people, super-positive friendly people, gay couples who aren't sure how I'll treat them, type-A runners, closet yogis, health freaks, alpine backcountry skiers, exhausted new parents, twenty-somethings getting ready to hike the Appalacian trail, ladies looking for a sporty 'cane' to help them walk after surgery. I would not get this in an office, or a factory. This offers mini-lessons in human nature and how I do or do not handle these different personalities.

I get to learn that how an abusive person treats me, a random cashier they know nothing about, has nothing to do with me because I'm treating them the same way as everyone else. I learn that the person who may seem snobby and inaccessible is actually a really down to earth person. I learn some people really are maybe-gangsters who pay with giant rolls of 100s. I learn that many people walk around anxious and when I am relaxed and I interact with them, it's a mirror for me how much I can be difficult to deal with when I'm anxious.

In general, I feel like cashiering is a training ground for social skills. There are a set of rules, which makes the interaction less stressful, but there's also plenty of opportunity to practice small talk and also how to handle different personalities. Because the workplace empowers me to do what I can to provide good service, for the most part interactions are positive, but the odd time when there is difficulty, like if a credit card gets denied, or someone wants something we cant do, or someone is being unreasonable, I learn assertiveness skills, or through my manager, learn how to handle that situation assertively.

I think it definitely helps that I have disclosed to my employer and have an accommodation plan. My six-month review was excellent. I exceed expectations, and my manager said, "Don't go anywhere". :)

For someone who is social but socially awkward, has sensory processing problems but can manage some degree of sensory bombardment (as long as they get downtime too), retail employment with a supportive employer may be accessible. It's not for every person, NT or spectrum, and I'm not even suggesting that it'd be a great thing to do long-term (it also doesn't pay very well). Some people could handle it. They may be struggling to find a workplace that can accommodate them, and dismissing retail jobs completely for all people on the spectrum may be robbing some of us of both opportunities for viable employment, and a space to practice valuable soft skills.

Fortune's Best Companies to Work For (retail)

Hope and then

2011-03-27T08:55:00.000-04:00

Thanks to wave mom -- I have been thinking about waking up this blog, and her recent comment is the extra little push I need. A combination of things had me pulling inward and this has been a useful period of introspection and internal shifting toward what I hope is a more balanced view of myself and the world.

In other words I've been damn depressed but I think there is some positive function to this depression. A psychologist I've been seeing said that I'm clinically depressed and have been for a long time. I'm not sure what's a long time (I don't know when I haven't been depressed), but yeah, it's been a long time, though the quality of depression changes over time. Lately it's been a very thick, tiring kind of sadness and feeling stuck. I think that rather than resisting it, I've realized that if I honour that place I can glean important insight from it. So I'm sitting with it. Indeed, changes come.

Heh, anyway, I think I have some writing in here somewhere. Keep an eye out (but don't let it dry out har har)

Autism Blogs and Trainwrecks

2010-10-05T11:20:00.000-04:00

I continue to love on Rachel Cohen-Rottenberg's blog. Her latest on "coming out", and the comment thread that that follows, is interesting.

I used to read the blogosphere for self-interested self-discovery-type information about autism, in order to find language to articulate my experience as I relate it to family, friends and professionals.

My friend said that she doesn't read anymore about autism because the bottom line is that they don't really know anything. I've likewise lost interest in articles about autism and scientific "progress" on the main, because of this. I don't need to repeatedly read inaccurate descriptions of how autistics have problems with empathy, lack emotion, and don't have theory of mind.

I now read the autism blogs for self-interested sociological intrigue, at a special interest level. That is, autistic people who write about their experience and their struggles with the wider "autism community" (read: people "affected" by an autistic person and continue to use the sledgehammer against autistic people for not representing the tragedy of autism as they see it)...

As I think I've written about before, I'm interested in the sociological development of autism as Identity. In the politics of enacting an identity and how that is politically significant.

In how the power politics of the label play out, in who has the "right" to speak, and how they speak as it relates to wider power politics in medicine, disability movements, and popular culture. As such, I peruse twitter as a representation in real-time, a kind of CB radio of how people are thinking about autism. I read with intrigue the ugly, messy personal politics, that grey area rife with black and white thinking and mud-slinging self-righteousness in pursuit of a Truth which doesn't exist.

My experience with the medico-parental discourse is ALL second-hand, because engaging directly with it is far too anxiety-provoking for me. I read about others' struggles with those people. I feel somewhat guilty for not engaging, for why I'd rather blog about why I don't attend protests [than attend protests] or engage with any but the most open and interested parents. I don't write about my rage at medication or ABA or "Autism S(qu)eaks" or misconceptions, for the most part, because I'm not yet prepared to be attacked for it.

So, I continue mainly to consume first-person accounts of people thinking about autism, and blog about my own navel-gazing and pragmatic difficulties in the world. That said, I want to support the writers of blogs and I have started trying to comment on other blogs, and this has earned me a bit more traffic, which then expands my desire to write more politically, more openly, and more assertively about things, instead of whining about sensory overload and such.

If you are autistic and write a blog about autism, post it in the comments. I follow a lot (more than blogroll suggests) so I'm not looking for particular recommendations of other blogs, but if you personally write online I'd like to support it with readership and discussion.

A Circuitous Route to Language

2010-10-05T10:01:00.000-04:00

I've yet to research this, but in therapy yesterday I came across an interesting insight into my thought and language process: sometimes, when I want to recall something I want to share, I need to go "the long way" through a series of steps that get me to the point.

For example, J asked, "Tell me again what that idea [you shared yesterday] about the weekend was?"

In order to tell him, I will think and say something like, "So, as I was telling you yesterday, because I have been feeling lately that we aren't getting enough exercise, I was thinking about maybe this weekend going bike riding".

This is a theoretical example (and may be understating the way I do this), but it does convey something about my speech and thought process. I actually need to start where I started, and reiterate the thought in almost the same way I shared it before. If I don't do this, I can experience a kind of "speech impotence" where I just. can't. get. words. out.

From the point of view of people with "normal" cognitive processes or speech abilities, I used a whole lot of extra words to take a long time to "get to the point". It may be entirely frustrating to listen to me, with all my redundancies and circuitous speech.

Interestingly, I can be more "clear" with the lights off, and with some grounding physical contact. I've noticed that some people with AS close their eyes when they speak. This could be an adaptive strategy to reduce input. As annoying as it is to listen to someone who has their eyes closed and therefore is taking in no information about their listener(s), I can see how it'd be useful if the words just aren't coming as fluidly as I wish.

I'm not sure what this circuitous language process is called, but my therapist said she has known other people who do this kind of thing, and at this point, I can't change it but can develop strategies to deal with it. In the meantime, I hope the people around me continue to have patience as I take "the long way".

Everyday Needs

2010-10-04T10:16:00.000-04:00

Many peers have written about the sheer exhaustion of being out in the world every day. With autism, the demands of social interaction, modulating sensory input, and the extra work to decipher and integrate all of it can leave us collapsed and overloaded at the end of the day.

Ultimately, I am seeing how important it is to make choices, set limits, and give myself permission to pace myself.

I have an everyday need, for instance, to shut out the world at the end of the day, to turn off the lights and wrap myself in a blanket. To completely relax. The tougher the day, the more this is necessary. Like each activity or environment I encounter has a certain "debt" level. Some things incur little energetic debt, like going for a hike (in fact this can be beneficial to integration and renewal). A movie on opening night incurs a lot of debt. So does work as a cashier. So does trivia night at the bar.

I choose to not limit myself. I prefer a movie not on opening night, but if my husband really wants to see it and it's opening night, I'll gauge how prepared I am to deal with it, and will often go. I'll sit near the front to minimize the number of illuminated cell phones and other movement in my field of vision.

I'm working on getting parts of my life together related to executive functioning, and am going to be working with a social work student intern on day to day living. I have to be mindful of how much debt I'm incurring, so that I can focus on building skills. It means a bit more isolation than I'd like, but I have to spend my energy wisely.

Conversational Much?

2010-10-03T00:21:00.000-04:00

I realized after the last few posts I did which garnered comments, that this medium isn't much different from my face to face interactions, in that I have a hard time reciprocating. This isn't 100%, I sometimes do have back and forth conversations with people, but usually I don't.

This is social pragmatic language, and I was recently assessed as having weakness in this area.

When the Autism Women's Network posted my profile mid-September, as part of their Pepsi Refresh campaign (go vote for them!) I got a lot of comments and I didn't respond to any of them. I feel bad about that. But I was overwhelmed. Sometimes when I do respond I feel like my responses are like.. cardboard? Dry and awkwardly bent.

Shameless Plug

2010-09-30T19:25:00.001-04:00

I make stuff. I hope to get more of my prints for sale, right now many of the designs on the site were drawn by tablet on the computer. Below is my best seller. It's not hard to guess why -- he's a looker.

Parents, fishbowls, and sledgehammers

2010-09-30T10:37:00.003-04:00

I attended and presented at the AANE Making Connections conference. The audience consisted of adults with AS, family of adults and children, and professionals.

The conference included a lot of interesting stuff. I attended a talk by neuroscientist John Gabrieli from MIT, who talked about some of what they've discovered about autism and the brain, what fMRI studied do and do not tell us about brain activation, and some results of specific studies. He talked briefly about one study that I participated in, but there haven't been enough participants to provide data. (If you are able to go to MIT to participate in fMRI studies, do it! You get paid and it's a couple of hours of work and sensory stress, but it's otherwise painless.)

I also participated on a panel called "Dating and Relationships". It was interesting participating. I shared my experiences. Another couple was also on the panel. It was a good experience. A lot of the questions from the audience were people asking specific advice about dating and issues for people with AS. Like how to approach dating, how to tell when someone isn't interested, or is interested, and how to make decisions regarding relationships. I am told I answered some of the questions well, so that was positive :)

I also chatted with a mom of a tween girl who was interested to hear about my experiences growing up. I have talked with parents before. In general they are anxious about how growing up will be for their daughter, and what the possibilities are. They want to hear about my experiences of university, and working, and relationships. I try to tell about both positives and challenges. About how I experience the world. My opinion that much of the challenge in autistic spectrum is at its root, about sensory processing.

My encounters with parents, in other words, have been generally positive. I think I can tell where they're coming from, their motivation to help their child, and wanting to hear from an adult who 'made it through' the child and adolescent and young adult phase. I think I present the "right mix" of hope and struggle, at least for parents of kids with the Aspergers label. Like, hey, my executive functioning is in the toilet, I have expressive/pragmatic language difficulties, experience overload, have an auditory processing disorder, and have rewarding relationships but am challenged by some aspects of that. I guess, though, I function in the world. More or less.

On the flipside, I also experienced a kind of "fishbowl" effect at the conference. Lunch tables had signs on them, which allowed people from different groups to connect -- families, professionals, adults with AS. I sat at one of the latter tables. At one point, a man and his sister came over to sit down, and she did not have AS. At first it seemed like not a problem but then she started asking questions of some of us. Maybe her brother doesn't live independently but she started asking one fellow questions and seemed very surprised that he lived on his own in an apartment. Then she started grilling another woman at the table. An acquaintance of mine took exception to this and said very assertively that she was uncomfortable with how this woman was acting at a table that is clearly labeled as being for adults on the spectrum, that her presence is being tolerated, but the way she's treating us isn't nice.

My non-confrontational-avoidant side kicked into full gear and I stayed silent. I saw my friend's point. It made me really uncomfortable. That, combined with people mulling around with their plate of food, figuring out where to sit and seeing the "Adults on the Spectrum" sign on our table and shooting looks at us that were discomforting. Actually my friend saw them more than I did, because I wasn't looking (in my usual obliviousness combined with already being overloaded).

In the buffet line, my friend and I were chatting about various things and some of the ladies in line (not spectrum) were giggling, I think because they found what we were saying funny. It was funny. This made me a bit proud; we tend to have a quirky, ironic sense of humour.

from withinmybox.com

But the fishbowl feeling was very striking; it's like we as adults with ASD were specimens, or objects of inquiry. It was like the joke about people with ASDs disappearing when they reach 18. We were suddenly there, in the faces of the people who think about kids with ASDs all day long, and used to encountering ASDs in children with a child (accented with the influence of ASD) understanding of the world. Here are full-grown adults. It's like they have no framework for us.

So I can somewhat understand the staring. My tendency is to want to reach out and make those looks an inquiry, understand them as a hesitation to ask, but coming from a desire to learn, rather than a derision, skepticism, or scorn. I want to provide a framework for adults where none exists.

Maybe I haven't experienced the lash of parental invalidation enough, the kind where they say you don't act like my son/daughter, you make eye contact, you don't seem ASD enough therefore you can't speak about it. (see this video for a great account of emotions, "passing", and invalidation) At least I haven't experienced the last part of that. I have gotten "I wouldn't have guessed you have Aspergers".

My mental response to that is, well, okay, fair enough, because you don't see all the coiled up tension and anxiety and confusion and the way my friendships and marriages stumble, the way my mind works, the messiness of my house, the potential of my mind contrasted with where I've actually been able to get to.

So I haven't felt the need to use the "sledgehammer" with parents or other NT people* who don't live with ASD as a first-person experience. But I can understand why some of my peers have to wield the sledgehammer.

Which leads, I suppose, to another potential topic: Why I Have Hesitated to Protest

*I am aware that not all people who identify as parents or professionals first, are NT.

Overload and

2010-09-29T22:37:00.000-04:00

This might be not so polished or coherent because I'm overloaded. Heh.

Maybe it's two separate posts that I need to write here. I'm starting with overload, but tagging along right behind that is overwhelm that I'm feeling about not understanding people.

Overload.
What does that even mean? Probably a lot of things. A state before meltdown. A feeling in my head. A scattered sensation. An exhaustion that is simultaneously 'wired' and an anxiety that makes my body feel heavy. It's all the senses all at once becoming a little more brash and difficult to handle. It's feeling trapped, whole body coiled like a wire. It's like drowning, being able to breathe still just by fighting but feeling like little by little something is slipping away. Like there is an edge I'm trickling towards.

That edge is a scary place. I used to think it was the edge of psychosis. I used to think that if I let myself relax, if I let go and stopped fighting the current I was feeling in my body and mind, if I didn't keep coiled up in every muscle of my body, I would go insane.

I admit, I have gone into states of regression when I've gone over that edge. Into places of non-language and vertigo, spinning word salad or feeling so scared and vulnerable that I feel like I'm 4. It is scary. Maybe some outside onlooker would see it as psychotic. But I think it's meltdown.

Meltdown is different for different people I suppose. Not everyone would describe it this way. But this is Karen-meltdown, not anyone else-meltdown.

Meltdowns for me are not tantrums. They may not be classic in any sense, at least from how they appear on the outside.

In overload, the senses are too much to bear. Everything hurts. I crave quiet, and darkness, and deep pressure, and warmth. In meltdown, things get all crossed and the senses don't process in their normal way, so the coherence in my mind is all messy and the world disappears from sight and touch and sometimes sound. Things don't make sense anymore.

Meltdowns happen rarely for me. I have great self control. I sometimes wish I didn't, because having it means suffering from overload, in silence. Like being in a constant state of feeling bombarded by the world.

This past Friday I went to a conference about Aspergers. I attended keynotes and panels, and even participated in one. I hung out with other adults on the spectrum, talked with a parent about .. 'stuff', asked a question, even, in front of the hundreds of people there. It took me two days (at least) to recover, and work these past two days have been really taxing.

Then at work today, it was just hitting me how much my interactions with people feel like they are happening between.. well, not a pane of glass. More like between us is 2 panes of glass, and in between those panes is a layer of water. Sometimes I can't hear the person well. Sometimes I can't make eye contact, or read their face because I have to look elsewhere. Then when I 'wake up' and I do look, I am faced with a whole crapload of emotions that I can't process. So I left work tonight and got home and J was asleep and I just cried. I feel like I could cry and cry because the world is overwhelming and I am sliding toward the edge, at any given moment maybe digging my fingernails into the ground a little more deeply, but still sliding...

I guess I'm still adjusting my understanding of it all. I'm still not at a place of acceptance with it all. I still fight against the overload instead of accepting my limits and respecting what I need to do to stay safe and integrated and grounded. And for that matter, I just don't exactly know what I need to do.

another step on the diag-onal

2010-09-21T20:07:00.000-04:00

I now have had an OT assessment and speech therapy assessment. Both were quite brief insurance-purposes evaluations, but for a $20 co-pay, that's pretty darn good.

The OT came first. They confirmed that, as suspected, I have some sensory processing issues, mainly sensitivities, and that while auditory processing is a biggie, so is tactile defensiveness. We'd work on both of those if I did therapy. I haven't gotten the written evaluation. But, I did leave with a surgical brush to start the Willbarger protocol. It has to be done every two hours for two weeks, which is pretty demanding, but I am committed to it. I have set an alarm on my phone to go off that reminds me, but I sometimes turn off the alarm and space out for a while. I missed at least one session yesterday, and kind of one today, but I'm getting there... it's a tough thing to manage when one has executive functioning difficulties.

The speech evaluation was interesting. I have definite challenges with working memory and what is called 'social pragmatic' speech. That is, using speech in everyday conversation, perspective-taking, and understanding the meaning of non-verbal cues, tone of voice, etc. She'd also work on executive functioning with me.

Overall, the evaluations were helpful for clarifying some things.

What Would I Do Differently

2010-08-23T17:42:00.001-04:00

AANE posted a talk by a man who was diagnosed with AS at 72.

A person commented in response to that article, "He does raise an interesting question: what would an adult do differently with an Asperger's diagnosis?"

I actually could interpret the question more than one way. At first I thought the question asked, 'What's the point of an adult diagnosis -- what would an adult do differently, anyway?". But I think actually the reader is asking what we might do differently in our lives if we'd had the information about aspergers earlier? What would we do differently in our lives up til now if the diagnosis came at 5? Or even 8 or 14?

I tend to recoil from the notion of regrets, because I grew up in a regret-oriented family culture. One that obsessed/s over what one might've done differently. If only. So I tend to dismiss all of this thinking as useless self-flagellation, pointless teeth gnashing, and a wonderful way to inflict pain on those in the general vicinity of the lamentations.

But as I thought about the question for a few more seconds I felt like it actually isn't just "one of those". In part because my head mixed the questions "what's the point of adult diagnosis" and "what would you have done differently if you had the dx before adulthood"... It began to feel more interesting.

If I'd had a diagnosis earlier? I'd have worked on the things I'm working on now, but only earlier, so presumably I'd be on different lessons. There's no guarantee of this. Some lessons come before others, but learning some given lesson at 33 versus 13 is a very different undertaking. Also, some lessons can't come earlier, no matter how early a diagnosis might be.

I'd have understood some of the answers to 'what's wrong' and why the world felt harder for me than for others despite always being told that I was so talented. In other words, maybe I'd have had a more realistic picture of myself. Maybe my parents would too -- since the dx of AS doesn't affect anything about my talents. However it has affected my ability to pursue meaningful and productive channels with them. When I was directed, I excelled. When I became so nervous about the Next Big Step that I wanted to quit, I quit. When it was all up to me, I folded. I didn't know how to ask questions, or seek out mentors, how to figure out where I was in relationship to other people, what other people thought of me, how to speak up for myself, etc etc.

As a child, to have been seen as not just artistic and intense but actually having trouble making sense of the world and being unable to articulate that I was, I think would have had a great impact on the trajectory of my development through my teens and twenties.

In my twenties, I might have never gone on a large number or inappropriately high doses of various medications to address "depression" and "anxiety" which apparently had no real "cause" -- instead, my lifelong depression and anxiety would have had a context, and I'd have been addressing the context instead of just sedating out the feelings. Feelings, I might add, which were accurate interpretations of reality.

I'd have seen my difficulties in romantic relationships in a different way. I have had a sort of immaturity that I could never see, because parts of my development as a child were so precocious and I was always called 'mature' and advanced for my age. It's like my perception of myself and where I actually was had been so different, I was unable to see how I was putting unreasonable pressures on my partners by being like a child.

I might've chosen to find a transitional place to live in between family and partner, but that offered more support than just a college dorm. Eventually, living independently (which I've never done). I think because I never lived independently I've never developed proper routines -- not that I want to become rigid in one particular way, but because as it stands, I have no routines, and my self-care as a result is kind of poor. In an exposure anxiety kind of way, I only do with someone else, often neglecting myself, and when alone, I become almost inert.

If I'd had a diagnosis earlier (if it existed when I was a kid), I wouldn't be the late-diagnosed adult I am now, with all my resultant maladaptations and gifts of living 'outside the lens'.

I definitely hid some of my deficits, which I consider to be a maladaptation. I hide what I don't understand. When I don't hear things, I sometimes pretend I heard and attempt to 'catch up' by filling in the pieces with what's said next. Maladaptive and ineffective.

But I can think of a lot of things that maybe I wouldn't trade out. Some things made me stronger, or just the awesome person I am today.

I had to figure out things on my own, which exercised parts of my brain that are stronger as a result.

I withstood abusive children without understanding how wrong (or right, depending on your perspective) they were for teasing or excluding me. This has made me a highly compassionate person.

I do terribly in groups, but when I'm spending time 1:1 people appreciate my friendship, my insights, my listening, my thoughtfulness.

My intensity and sensitivity are great gifts in my career as a yoga teacher. My auditory deficits have made me appreciate the musicality of the written word, and the poetry of the pure notes of a french horn. My sensory sensitivities have made me a fabulous lover. I wouldn't trade any of these things.

But I think OT and possibly speech language therapy might've helped me integrate the world more, therefore learning (social) lessons that I'm only now feeling the full magnitude of never having learned.

I'm not really filled with regret. But I do appreciate the great challenge that lies ahead of me as I am just learning in a deeper way, what that challenge is.

On Being Versus Having

2010-08-20T14:16:00.001-04:00

Regarding: http://blog.autismspeaks.org/2010/08/19/itow-beukers/
(ignoring domain name, addressing content)

I really (really really) don't like the title to the post -- Do You Have Autism or Does Autism Have You?

Whaaaa. It's asking: are you survivor or a victim?? Neither, doughbags. (Apologies if the title was written by the author, but for some reason, I intuit that it wasn't.)

Along these lines, I'm curious to find out thoughts on Rachel's article here http://www.journeyswithautism.com/2010/08/15/am-i-more-than-my-autism-i-refuse-to-answer-the-question/

Everything I am is completely me: I am entirely autistic, entirely Jewish, and entirely female. If you split one of those things off, I wouldn’t be myself anymore. You can’t take away my Jewishness and think that you will recognize me. You can’t take away my being a woman and end up with a complete human being. And you can’t take away my being autistic and think that I will continue to exist, any more than you can take away all my veins and capillaries and arteries and think that my heart will continue to circulate blood throughout my body.

Rachel blows the Autism Speaks question out of the water, answering their title question with, "I am neither a victim nor a survivor".

I'm ambivalent about how to interpret "has autism" because while I don't "have femaleness", or "have Jewishness", I dont *feel* like saying I am autistic or have autism are either grammatically invalid, and one or the other doesn't imply a straight negative. Although it does describe challenges that I encounter with the world. It describes a particularity of my experience -- in my opinion, in a very general and broad-stroked way. In fact it captures very little of who I am, and I almost want to reject the label.

Maybe that's another post. Unfortunately most of the world doesn't really "get" the difference between "T/truth" and/or social construct (which aren't mutually exclusive), which is such a nuanced conversation that it borders on the esoteric.

I do agree with Rachel. The question (do I have autism / does autism *barf* have me / am I autistic) isn't valid. One doesn't have to insist that autism is negative or positive, or even essential or non-essential, to question the very question.

In terms of identity politics, claiming of terms, and "what we want to be called by other people", having the debate is essential, privleging autistic voices over the proclamations of secondary or tertiary parties is essential.

I think some of the confusion lies in part ith the evolution of identity politics -- in the disability community in particular? I'm not sure. Like, person-first language and all that. It is a kind of reaction coming out of needing to establish personhood before aspect-of-personhood-that-is-negative. Two things are happening that make this person-first argument less valid or important:

1. The descriptor itself is less of a negative, even if it doesn't become a positive, it becomes a "fact" or "aspect of being"

2. That aspect of being then is recognized as *inextricably linked* with their experience of being human. Therefore it is actually important in terms of recognition of that person's experience. A gay person has a particular experience of being gay. Their experience, if they were not gay, wouldn't be the same if you took that aspect of being away. If we erase this fact we erase recognition of discrimination and hate.

It's like colour-blindness in terms of race. When people say "I don't see the person's colour, I only see who they are", actually they AREN'T seeing who that person is. That person has gone their whole life with the experience of beingness as a person of colour. This isn't a generic experience, therefore growing up in the US South or rural US or urban US or Brazil or Britain as a person of colour is a unique and particular experience. It is inextricably linked to who the person is. Notice that doesn't mean "all of who they are" it just means, you can't take that experience away and expect that person to be who they are. From what I understand, race politics in the US is way different than from where I am, or elsewhere, in terms of how people are thinking about the debate. I think examining how identity politics is talked about in other communities is very important to learning about how to navigate this within the autistic community.

Other people's understanding when they use the word "autism" IS important. It's not simply a matter of semantics, and the semantics matter. Language creates the world, in one sense, and is alive, and has real effects on people.

What would I choose to describe myself, then?

Awesome person. Or person who is awesome. Either one is fine. (takes tongue out of cheek)

Microflora and Neurology

2010-06-22T17:03:00.001-04:00

Oh, I actually don't like "weighing in" on food conversations. I also don't like controversy. I know this is all ripe for debating. Regarding GFCF (Gluten-Free Casein-Free) and autism causation....

I'm not suggesting a causation. I am suggesting a connection. I am suggesting that if diet affects neurology then addressing dietary/digestive imbalances can have an effect on the neurological/sensory/inflammatory issues associated with autism. An effect. Not cure.

I hope the above is clear enough that instead of arguing that I'm somehow camped out on DAN blogs, I'm thinking about something that is only just starting to be recognized in the biomedical community, and integrated into various specialties, looking at the relationship to various conditions/diseases/states of being.

Anecdotally

I cannot eat dairy. I once found some amazing almond cheese. I ate LOADS of it. This resulted in bad diarrhea. Checked ingredients and discovered it had casein in it. Other foods with casein (the protein in milk) also affect me badly - cramps, pain, bad poops. Evil.

I have, despite cutting out dairy, major digestive problems. At the very least, abdominal pain and problems digesting and processing food makes it really really hard to focus on other things, because the pain is bad.

Another anecdote: When I was in the hospital and had to have surgery, I was put on fluids only. Y'know, the glucose bag. So. I had no food for days. I have outside verification that I was more clear-headed, communicative, coherent -- on narcotics, even -- than I usually am. I made some effort afterwards to avoid dairy, gluten and soy. It's hard, and I stopped. I still slip up on the dairy. Brain no workie. Stomach ouchie. Suffering. Yes, because of food. Not only because of food, but some because of food.

Now; if I had a healthy gut, I have no idea what I would be like. I do know that even if everything could be explained away by horrible stomach pain my entire life and the inability to connect to my peers because I was loaded up on dairy and other foods I couldn't digest, I would still be who I am if I healed my gut now. I developed in a certain way, and even if I change my neurology in the future I would still be who I am right now. Even if children get their guts in order through diet changes, I do not assume that all the problems go away. Understand that much.

And now, moving beyond anecdote...

Fact: Your brain is connected to your gut. You have nerves running to and from your organs and this is a part of your neurology.

Still really young, the study of gut microflora offers an interesting take on what diet might do for autism. But first take a step back from the label "autism". Take a step back even from notions of "disorder and syndrome" which are really interesting to pick apart (...there are no objective things in the DSM, no clear pictures, only sketches of checklists that provide a common and arguably useless language; ).

While this article deals with immunity and microflora (things like allergic response, which isn't far off topic from dietary issues), see what it has to say about how both innate and acquired immunity is related to other body systems:

Whatever influences, modifies, enhances or suppresses the immune response (at any stage or level) does not exist by itself, and is not going to have any effect unless it is harmonised, connected and influenced in two ways. One is by a number of other systems in the body, including first and foremost the central nervous system, which includes the mind. Second is the endocrine system, which creates and influences emotions.

So the nervous system, the nerves, indeed *neurology* is intertwined with immunity. This isn't, from what I'm reading, a one-way causality thing. Why should it be? Brain communicates with gut, gut communicates with brain. Signal and response. Gut affects nervous system??? Whoa.
Gut microflora is an acquired ecosystem, meaning, when we are born, we have no bacteria in our gut. Microflora consists of many many different bacteria. We actually contain these helpful bacteria in our gut, mouth, genitals, on our skin, really everywhere -- and the human body has more non-human DNA than human-DNA (isn't that fraakin' mindblowing?) :)

Total microbial cells found in association with humans may exceed the total number of cells making up the human body by a factor of ten-to-one.
-Wikipedia

So. What does this mean?

An Interpretation

The body's ability to deal with its environment, regulate the nervous system, emotions, sensory input, etc etc. is impacted by the balance of microflora in a person's gut (and other parts of the body). The more diverse the microflora, the better that ecosystem processes a variety of foods, and other potentially harmful and benign substances from the environment. If the ecosystem is less diverse, it may not be able to process some types of food.

The simplest and best known example is yogurt. (Active culture) Yogurt is basically dairy that has live cultures which have partially digested it. It contains the bacteria necessary to digest it (albeit, not necessarily in enough quantities for someone like me to handle it). A home remedy for yeast infections is yogurt. A big problem is also candida, the overgrowth of yeast in the system. We're supposed to have yeast, but if we have too much, the system is imbalanced. Anything we eat with sugar in it will promote the growth of yeast, for instance. Reducing sugar can 'starve' the yeast.

This doesn't just apply to yeast. If any kind of bacteria gets too prolific it can make it hard for some of the other useful bacteria to do its job. We have some kinds of bacteria that are ok in small quantities but not in larger quantities. Some bacteria we don't know much about. We don't know what they do. We can't even culture some of them.

So a lot is not even known about this field, and while there has been scarce study of any microflora link to autism, there is also microflora research and anecdotal mention in relation to obesity and diabetes, MS, Celiac...

It doesn't seem like it's nonsense to make a connection between neurology and acquired immunity (which is what microflora is).

Restricted diets because of sensory defensiveness could affect microflora balance. So could a lot of processed food which is primarily sugar, corn and soy. I've read anecdotes that when a child is removed from one of the "offending foods" like sugar, corn, dairy.. they will have what might be called an 'adverse reaction'. I think if I were a bacteria colony and had my main source of goodness taken away, I would scream bloody hell. Donna Williams writes of a backlash reaction (too fatigued to cite, go see Donna Williams' articles on food intolerances and addictions in autism and her own experiences). We are what we eat and we eat what we are.

That isn't asserting a causation. This is not autism=bacterial infection. Nor is it vaccine -> kills gut bacteria = autism.

What it is asserting, however, is that balancing out microflora can affect mood and cognition. Mood and cognition can affect gut. Stress can create intestinal problems. What we think can influence neurology. Intestinal problems affect neurology.

If I can potentially address sensory problems like sensitivities or disregulation by altering my diet (adding foods that promote healthy microflora or eliminating foods that cause pain or promote bacterial overgrowht), I'll try it :)

And that is very different that saying I think I'll cease being autistic if I stop eating dairy and high fructose corn syrup.

I actually must thank my husband for his understanding of neurology, psychology, nutrition, and prolific research into peer-reviewed sources. This cobbled together post doesn't do his thoughts justice.

(I reposted this from my contribution at Autism Women's Network in response to The Myth of GFCF Foods)

Keeping a Diary

2010-06-14T17:52:00.000-04:00

I saw my doctor today and she really does think I have IBS. She told me to do a bunch of things, one of them is to keep a symptom diary.

Okay. So in my life I have considered and even tried keeping diaries of various sorts. I kept a diary for a little bit when I was quite young, maybe 8. I kept a private blog for a little while that I still check into now and then. I've considered a mood diary, a food diary, a menstural diary, an exercise diary, a yoga teaching diary... feck it all, I said.

The main reason I rejected the idea of a diary is that, especially when it comes to mood and food, I figure that my obsessive tendencies would drive me over the edge and into the nutty realm of meticulous record-keeping.

So a symptom diary for IBS, which includes what I eat, when I poop, and how I feel at any given moment, that is an all-encompassing project. And for a whole month! I have already added in obsessiveness -- I am writing down the approximate amount of fiber each meal contains. Since part of my doctor's instructions is to get 25g of fiber a day (and at least 3 in any given meal).

I think I'm at about 6-8 grams today, that's not much. Can you tell I'm already obsessing?

Gut Problems

2010-06-02T12:32:00.000-04:00

I won't get into gory details, but I'm pretty sure I have Irritable Bowel Syndrome or some such difficulty. I have had problems all my life with my stomach. Frequent stomach aches, and gory other things I won't talk about, but to say, it all hurts, is inconvenient, and probably means I'm not absorbing nutrients like I should.

I definitely have a problem with dairy, and I am 90% successful at avoiding it. Recently I ate a whole Mac n' Cheese tv dinner, and I ended up going to the doctor because I thought I was having organ failure. I had my gall bladder removed in 2008, and depending on what sources I read, my diet should/shouldn't change to avoid fatty foods and I should take lecithin to replace bile salts. I don't bother with any of this. I don't know if I should completely eliminate other foods, though, and if anything I think I should focus on removing all processed foods from my diet. And probably butter (yes I avoid dairy, including stuff wtih casein or whey -- it's not just lactose -- and yes, I eat butter, because a nutritionist told me that was likely okay)

Having these issues impacts me socially:

I have many cravings, and many food aversions. So, I'm picky. Many people have dislikes, and so not everything I dislike is because of some neuro issue like sensory defensiveness, but it's hard to tell the difference sometimes.

Ordering at a restaurant is an exercise in running the server back and forth from the table to the kitchen to inquire about ingredients (some restaurants are amazing though, and accommodate "allergies" and have special menus, or can say exactly which items I could order).
Then, I often order something from a restaurant and then can't really eat it. I'll lose my appetite halfway through a meal, usually because the meal is too dry and I can't figure out how to remedy that (the only bbq sauce many restaurants have is steak sauce like A-1, when I need something sweet).

At home, I often go on spurts of wanting to eat the same thing over and over (most recently it was artichokes). I find it hard to cook for my husband and me, and provide the variety he probably wants, and make things he really likes while accommodating my own proclivities. I do not like most rice because of the texture. I love pasta, but I think (cooked) tomatoes bother my stomach. I started making olive oil & white wine pasta with some flax meal thrown in. I can sometimes not figure out what to make, and finding recipes is overwhelming.

Often I'll eat and during the meal or shortly after, I get a very bad stomach ache and have to run to the bathroom over and over. The patterns vary, but it can be a struggle to manage outings when I'm having episodes of this. Sitting through a movie, or going to a restaurant, or even worse, being out and about and suddenly needing a bathroom so bad that I'm worried about accidents.

This is embarassing. But I understand that it's not uncommon for people on the spectrum to have gut issues. See Donna Williams for one perspective on sensitivities and gut issues.

I went backpacking this long weekend and I'm really suffering - I think I ate too much protein and not enough of other stuff. My last day of hiking was really bad, I felt nauseous, hungry, but unable to eat. We went for dinner at Outback and I barely ate my food. I couldn't eat the steak I had ordered, only the shrimp, and bread, and a sparse bit of fries.. I took it home but it was embarassing and it annoyed my husband.

I really want to (and need to!) change what I eat, reduce stress, and figure out other ways to cope with this. I haven't addressed it completely in my first thirty years because in general, because I grew up feeling this way, it often doesn't occur to me that difficulty eating, nausea, severe abdominal pain and unrelenting irregularity just. isn't. normal. Or okay.

being in a relationship (and part of) the social world

2010-03-19T18:31:00.000-04:00

I had a conversation with a new friend today, and it's really making me think. We talked about being out in the world and socializing with our husbands and what that is like. I really haven't done much going out with J, we have some friends of his that we hang out with, but we don't go to parties and at church it's been difficult to connect to people.

My friend said that she isn't all that conversational with the people she and her husband gather with, in part because they have kids and she doesn't, or whatever else, it's like they don't have much in common, and so the conversations often fall flat, and she thinks that they perceive her as maybe immature or less emotionally adult (and she said this isn't incorrect, in a way), and that they wonder, 'what is he doing with her?'

Wow. Exactly. This reflects our/my experience and fears about being social in the world with my husband. I think that my friend accepts the reality in a way that I don't, and it she describes her husband as maybe not so concerned with the implications of people's perception that he is with someone who 'isn't a woman'.

Sometimes I don't feel like a woman. I don't feel on par with most 32 year olds. I don't think I am.

I realize that development, achievement, and social connection are all diverse/variable things, and there isn't just one way to be in the world -- as if we all knew at 17 what we were going to do, and did it, and were successful, and we all fit some mold of what a 30-something person should be, or a 40-something person should be. It doesn't work that way. I sometimes think, with my friend, that if I can't connect with those people, then oh well, and it's not like they'd think me a bitch; I'm a nice person, and so I do have some challenges. Okay?

I'm an intelligent person, I'm a weirdo (in a geeky and sometimes good way), I am caring, I can have deep and soulful conversations with friends one-to-one but put me in a group/party and I don't do well.

But while I could say that the people who would judge me and J are idiots, the fact is that people can/do/will and I don't know how to feel about that. Or what to do about it, aside from hiding out and not being seen as a couple -- which is untenable.

I don't want him to be judged for seeing deeper than my not really holding a conversation well or sometimes getting overwhelmed or overloaded and having sensory problems. I don't want them thinking,

"Wow, she's ... not all there. Why is he with her?? I mean she's hot.. but she's kind of meek. Maybe he wants a frak-toy. Maybe he wants someone he can dominate. Or what's wrong with him, that he can't find some professional successful grown-up woman to be with?'

All of this smacks of BS, but there's some reality to it that means, somehow, our dealings in the world can't be easy, unless I learn some skills and develop emotionally.

This new friend and I are really appreciating each other and the potential for this friendship. I think we'll plan a foursome dinner sometime soon. I would really like to explore having more friendships as a couple with J.

I think he and I both need to gain confidence and feel like it won't just be a disaster. We were long distance for a long time, basically having identities that were as single people but in a relationship, a kind of nebulous state that was still really like being alone socially because it didn't involve negotiating social relationships as a couple. I think we just aren't known in the world enough together. I don't know how the people we do spend time with now perceive us.

I think the anxiety and fear of judgment is the worst part because it can lead us to not try and instead become isolated and that has consequences for our relationship with each other.

I'm not sure if this was coherent, but it's at least reflecting what some of my mind is doing with the really important thinking going on today.

slide.

2010-03-16T10:12:00.000-04:00

Rachel Cohen-Rottenberg's post about self-worth touched a current in me that filled me with .. I don't even know. Thanks, alexithymia.

I've been married a little over three months. J is troubled about our lack of emotional connection. I am too. Every marriage faces challenges, but add autistic crap to that and it can feel potentially un-rescuable.

It isn't really un-rescuable, just like neuroplasticity means I'm not some static human who doesn't change, and potentially grow beyond social deficits.

When J shares how he's feeling in relation to me, (when anyone does, really), my response is most often disconnected from the person -- I just circle back into myself and blame myself and allow what they're saying to feed my empty sense of worth. I can sometimes be angry that they are blaming me for the whole situation, but I also somehow know that their assertions are true and I despair. J says he has trouble explaining some of where he's coming from and how he sees me because he senses that I won't understand. I accept this as true and I slide further.

I am doubting my ability to connect. I often just don't know how to respond to statements about feelings.

I feel pretty empty and boring and afraid to go into the world. I often don't go anywhere unless I've made a commitment to do so.

I am shutting myself off in self-protection.

Every week (when the stress gets too much to hold in), J raises the issues of our lack of connection and his doubt about us working, his uncertainty around me being able to be an adult with him in the world to socialize with average people, to be able to be at his level emotionally, get better at communicating. I agree that these are issues. I see that neither of us knows what to do about it. Not really. I can improve myself through various actions like being physically active and keep practicing connecting, working on auditory processing. It just feels like uphill, and I keep sliding.

I have two modes:

1. guarded defensiveness which includes bodily clenching and holding and hyper-sensitivity as well as emotional opacity and blunted perceptions of the social world. A kind of depressive sullen vacuous lump.

2. childish abandon which includes incongruent exuberance, strange voices and mannerisms, silliness, sometimes fake happiness, a level of emotional opacity and no awareness of the people in the world around me and where they're at. A kind of abandonment of the hyper-vigilance I usually maintain, the release valve if you will, the spastic.

The above is too simplistic, but it's a rough idea of how I feel like I live in places that don't make sense when you look at them all together. It's like there's little continuity to who I am. Except, I can experience depression as a continuity. I can experience anxiety as a continuity, as well as the feeling like I'm not like other people and I feel alone.

I am going to find someone to talk to, who knows about issues related to aspergers.

A squirrel keeps scaling the outside of the house right by the window, and the cats are stalking 'im. Gonna try and snag a picture. Living in the little smiles helps a bit, as I try to deal with this current slide.

burnout and the long walk

2010-02-16T11:05:00.002-05:00

Life and its complications unfold

Moved to a new country and all the unknowns/changes/isolations
Married to a wonderful American
Reconnecting with the Aspergers Assocation of New England (AANE)
Dealing with an entirely new health care system
Unsure of how my Aspergers diagnosis will be affected by upcoming DSM change (and my hope that it just gets folded into autism, not wiped off the board as an irrelevant waste of funds and affirmation.
Finding day to day tasks variously difficult
Not having a heck of a lot to do that involves contact with other people

and the biggie

Painful awareness of of my limitations with social relationships.

During a long walk in the woods my guy J and I talked a lot about what being weird means, and what challenges my autistic stuff has in our relationship, and how, despite my growing depression at realizing how much I haven't developed in the first 30 years of my life, there IS hope. It is possible to develop.

But it is a struggle. I get burned out. I limit J in his need to connect in the world as a couple. The difficulties we have with each other in communicating and connecting has placed a strain on us. Rachel at journeyswithautism.com talks a lot about how her husband supports her and also sometimes struggles with things. I perceive the fortitude required to be in relationship.

I feel empty sometimes. J wishes for more connected 'adult' communication, that isn't about tv shows or dinner (artichokes!), that isn't just endless amounts of silence that increasingly make him think that there really isn't anything going on 'in there'. My defense response is that OF COURSE there is. My defense response is 'but this is only really a strength, that zen-like ability to be only in the moment without monkey mind messing up the serene landscape of my being.

But all those defenses come falling down, and I'm left wondering -- am I really vacant? I know I have ideas and thoughts lurking in there. I know that in the past I experienced sharing them as an exercise in inviting sometimes ridicule, invalidation, being dismissed, or just alienated. I feel stymied. I married a skilled orator, in that he can formulate complex thoughts, hold a conversation, remember different threads and synthesize complex themes into original thought.

I have trouble tracking each sentence, struggle with object relations, use incomplete sentences and get lost when I'm trying to verbalize a thought.

I really understand his frustration. I understand his drift toward giving up because it requires a mountain of patience to slow down that much and even help me work out what I'm trying to say and say it in a way that makes sense.

Spending time with a friend recently, who has two kids, prompted a moment that brought this all into a broader light; we were sitting having food, the 3 year old, mom and me. The three year old suddenly asked her mom, 'why is no one talking?' Her mom explained that sometimes there isn't anything to say and there are pauses in conversations and there is no need to talk all the time. But I left that interaction realizing that while I can be quite content spending shared time in silence, not everyone feels the same way about that.

Later I told my friend in a somewhat apologetic way that I was aware I'm not always the best conversationalist. She responded reassuringly that another friend of hers talks non-stop and this is far more tiring and annoying than a relaxed quiet presence. This was helpful, but when I shared it with J it was also an opportunity talk about how we feel alienated from each other because I don't communicate much.

It's not just silence. It's not just me. He spends a lot of time lately on programming projects, and I hang out beside him doing my own thing. But what I'm doing isn't all that mentally stimulating. A lot of what I do hints at some absence in me of internal drive and an intrinsic desire to keep exploring and growing.

I want to learn social skills. But I'm increasingly becoming afraid and isolated, preferring to hide out that fraak up yet another potential relationship. They start off fine and then they fall flat. Because they never get past a surface level of positive interaction. Once a person wants something deeper, it becomes evident that I don't quite know how to do that.

J and I have developed a deep connection over 3 years. He's sympathetic to a lot of what I'm trying to sort out. He's even sorted out some of the same autistic issues I'm dealing with. He can be a guide, breaking down some of the rules and directions/opportunities for learning. He can also get tired. Or wonder, how much is he supposed to just accept it all and forget about me changing, and how much can he push me toward change? Is he allowed to feel lonely, and angry about feeling alone?

I think he is. But my own tendency to take all of this insight and become overwhelmed and lost and then isolated, further pushing myself into a vacant place of understimulation and depression, means that our desire to hold hands for this long walk is perhaps waning. Our fear that we will be unable to prevent a kind of drift apart until our marriage is just an empty series of motions, that we aren't peers but roles, of functional male and helpless hapless female who is never sure of what parts aren't disabled, whether any direction that pushes beyond the safe borders of autistic comfort is even worth trying.

Burnout makes me scared.
The path -- the long walk -- makes me hopeful that there is somewhere to go.

I'm having a bout of debilitating pain that rules out doing much of anything.
I'm looking forward to a support group on Thursday (the pain should be gone by then)
For it's a group of other women with AS and generally I can relate with them and find useful insights that help me with some of the more troubled thinking above.

I'm not there at acceptance. Neither is my partner. I'm not sure I want to just accept everything (in the sense that none of it can change). I think some things can change. They have to change. They don't work. Like, pretending to hear someone when I haven't, just doesn't work.

I'm lost.
not so joyful, I guess.

Autism and Who I Am

2009-10-14T10:56:00.002-04:00

I posted this in an email group I belong to for women with Aspergers and thought I'd share it here.

I agree that a focus on specific challenges that need to be addressed is the most effective way of helping people instead of obliterating them.

In my opinion parents who (seem to) want to obliterate autism (and autistic people) are wanting their child to have an easier/better life, but also on some level they don't accept not having a normal child. There is such a pressure to conform, it seems, such faith in the technological fix, an expectation and entitlement to "happiness" in some cultures in North America.

Recognizing the potential for even non-verbal people to advocate for themselves and agree or not agree with specific treatments. An AS friend of mine had ECT that did yucky (understatement) things to his memory and affect.

Neurological change CAN happen, though, but it does take work. There's no pill for that which does any good for the real challenges of autism (unless there is a comorbidity which is extremely hard to tease out). I see some "treatments" like ECT, drugs, or other more brutal therapies as something like gastric bypass surgery. Yes, most people CAN, through effort, help themselves heal. There can be social supports to do so. But understanding what the problem is, is huge.

Again with the empathy question. People, including Robison, seem to be saying 'you can't make generalizations' but then make just that when it comes to ASD ability to empathise. Sigh.

The disability/diffability question of what makes us who we are is such a fundamental argument to all of this. There are the people who think that the autism is keeping people from being who they are (or could be), others see that autism has shaped who they are and is inextricable from that. I'd kind of say that I see it both ways for myself.

People in wheelchairs can simultaneously wish their legs/balance worked better, and believe that being different from most people around them has given them strength, empathy, an understanding of the human condition that makes them who they are today. And if you took away their difference, who knows what their perspective on the world would be?

And I feel that way -- growing up different/odd/eccentric has involved pain, suffering and isolation, but has also made me very concerned with social justice, not quick to dismiss people and treat them badly because of their difference, not assume the meaning of behaviour in an individual. Aspergers is not necessary to having these qualities, but in my case, I think my differences because of aspergers has shaped who I am, and I like who I am.

But I do NOT like having problems with executive functioning, anxiety, or sensory processing. I do NOT think that I need to eliminate all the features of aspergers to have less difficulty with those things. Sensory processing disorder has shaped the way I see the world. I think there are valuable things about the way I see the world. I paint, and the way I paint is shaped by that. I see colours a certain way, I discern shapes and understand objects in ways that informs my art. I would NOT take that away. It makes me cry to think I would lose that.

change and acceptance

2009-08-28T10:32:00.006-04:00

I was talking (on the eviol phone) to my guy (fiance! we'll call him J.) last night, and we were talking about acceptance and change.

(note - we're long distance, cross-[US-Canada]border and working on not being)

We both went for an initial consult at an aspergers clinic when he was in town. The specialist I saw was talking to us about acceptance and change. What about me and aspergers do I/he/we want to work on, and what is it that we accept as the way I am, and work with? Important question, and one I have a hard time answering.

In "The Way I See It" I recall Temple Grandin writing about how sensory issues, while not specifically in the Diagnostic Criteria (perhaps because it is not externally verifiable?), is one of the main problems for autistic people in day to day life. In other words, it affects functioning day to day in a striking way. It can be the root of a lot of behaviour seen in autism. She is not the only one I have encountered who sees autism this way.

Yesterday was a long, busy day, of teaching yoga and working at the studio front desk for 6 hours. Interacting with lots of people. Bright sunshine. Constant music we're supposed to pipe in. Incense that I like to burn to create a "mood" but that overwhelms me somewhat. Cold air, temperature changes. It caused what I consider very common for me - a sensory overload that doesn't create a meltdown, but taxes me almost to the edge of one, but I don't fully realize I am that close. A kind of collapse into exhaustion can sometimes preempt a meltdown. I haven't learned my patterns yet. It feels unpredictable. I think as I learn my triggers, I will have a better sense of this.

So last night I was talking on the phone after working. I got in bed.. under my weighted blanket which had helped me settle so well the night before. My body was absolutely crawling with sensory "bugs" and I couldn't settle, my body was aching and buzzing and itchy. My pants were hiking up to my knees, shirt didn't feel right, blankets weren't sitting right, and I was cold. Cold is a big problem.

I took a step back. As often happens on the phone (auditory channel) I was doing mostly listening and little talking. I was listening to J, curled up in a ball, scrunching my face, body tense, holding my head, pressing into my eye, squirming, frowning, and generally just spazzing out. And I realized something. From the outside, I looked totally distressed. I was somewhat losing my ability to listen to what J was saying, but I was still present, and yet, I knew that if we were not on the phone but in person, J might have reached his limit long ago, reading my body language - my emoting - as totally distressed with what he was talking about. I would have been completely failing to show him that I was listening and actually interested and motivated to hear what he had to say in that moment.

Because my body wasn't letting me. Because however much I was trying to make his speech the primary focus of attention, my body wasn't letting me.

My aspie sensory stuff is, I will assert, significant but comparatively mild to some people's sensory defensiveness.

And this is where I spill over into political anger at the lack of understanding about this autistic experience of sensory disintegration/overload: when you read what I am describing to you, (as an NT, if you are reading, or as someone who experiences some version of this)... and you extrapolate and intensify this experience I describe by a factor of 100 ... does it make ANY SENSE WHATSOEVER that an autistic person would be trapped in that, literally unable to attend to external (social) information, let alone emote appropriately?

Seriously.

J and I gained insight from this sensory moment in a number of ways:

He got some perspective on just what I was going through at that moment, and got a better sense of past instances where I seemed to be disturbed, and how he might've wrongly interpreted my behaviour
It further clarified how much it is important that the both of us work on getting me physically comfortable in order to socially interact. If I am in such discomfort, it may be highly frustrating to try and have an important conversation with me
What I am emoting isn't necessarily what I'm trying to communicate to the world. And this more generally means that when I interact out in the world, people aren't "getting" me. I may have a frown on my face and that has nothing to do with the person I'm dealing with but they may interpret my facial expression as related to them. Oops. Not their fault..

Sensory integration is workable, because neurology is plastic, meaning changeable. If I am right that reducing sensory defensiveness and disintegration means I can attend to social information better and emote less discomfort that gets misinterpreted, then some of the social issues can be worked on with a little less effort because learning can actually take place. If I'm freaking out in my body, it's kind of hard to learn.

There's a TON more I could write about this. Acceptance, as my specialist suggested, is important -- I need to, J needs to, accept my experiences as valid. Accept that this is where I am right now. This moment. The next moment.

Because while it is helpful to know what can be worked on and what is "intractable" about being aspie, I firmly believe that unless I can reach acceptance, I will not be able to change what can be changed. Because in trying to change it I won't be coming from a place of awareness of where I am at. Learning happens best when it stretches a person comfortably, a bit at a time, without so much effort that exhaustion and frustration ensue.

It's exactly like yoga, actually.

If I approach the problem with a lack of acceptance, I am actively resisting, not relaxing into the place where I can really be open to the lesson. The lesson may not be appropriate at that time. I will be less flexible. My mistakes could hurt me (cause a backwards movement in progress, whatever that means). It won't be fun. That's right, it won't be fun and I won't want to practice what I'm trying to learn. It will be too uncomfortable.

If I don't accept something, I can't open it up and examine it, therefore I cannot really change it because I haven't delved down to discover the root of it.

So I could try to force myself to learn social cues, body language, how my face is supposed to feel when I want to convey happiness rather than pain. But if I'm feeling pain, it's a lie. If I can't focus enough to comfortably take in social information because of sensory overload, I will literally suck at doing it. I will have trouble learning the lesson, I will fail, and I may be convinced that I just can't do social.

Temple Grandin has made huge strides in how much she can function in the world. This is externally verified (see foreward in her latest book). She says clearly and strongly to autistics that they must work on things and overcome many obstacles in order to succeed.

As much as acceptance by NTs, as much as a neurodiverse perspective is necessary, as much as no one who experiences being autistic chose it, and as much as any of us like who we are (and we SHOULD like who we are!), being in the world requires certain things. Grandin asserts as well: change what can be changed. That is the path to greater success (and I would say more importantly, less suffering) in the world. Define success as you want, but take control of everything you can take control of.

Be where you are. Be open to being someplace different. And breathe.

personal and political

2009-08-28T10:16:00.003-04:00

I prefer to write from a personal, "I" statement place. I shy away from extrapolating into more political discourse, not because I don't enjoy it or find it necessary, but because ... it is so informed by my personal experience that if I am challenged in a political way I *feel* it as a personal challenge, even though intellectually I know the person isn't necessarily attacking me personally. Or maybe they are.

I had some thoughts last for a post that tread into the muddy waters of neurodiversity and acceptance, neuroplasticity and change and success... and my thoughts were primarily generalized and I think they would be provocative in some way.

Not that I have a huge readership, there are "those people" who come out of the woodwork, finding these posts through twitter, or a google search, and decide to pseudononymously (sp? thank you CBC's Q for the concept) dive in with all their assumptions, and the I feel compelled to pick at the "knots".

There is a definite risk/challenge in speaking out politically, speaking "for" a movement, heck -- having an opinion!

So I tend to choose speaking for myself only. I will choose exploring the grey things instead of being forceful about things I don't always feel confident I have any authority to speak about anyway.

But I will say -- the personal and political are intertwined. It's not arguable as far as I'm concerned. It's why it gets so heated. It's why there aren't clear answers.

And it's why I'm actually committing a political act by using "I" statements and sharing my personal experience.

being dismissed

2009-08-14T10:49:00.001-04:00

[there is profanity in this post. you have been notified.]

well. it's coming from more or less close people including family. dm sharing friends' comments about how a specialist in AS would OF COURSE diagnose AS. just like a psychiatrist would find something else, a naturopath would find candida, some other allopathic dr would find something else. that a more generalist would be better at identifying the "real" problem because they aren't looking for one particular thing. the thing they make money at treating.

bullfuckingshit.

a. the people i went to are aspergers specialists. they see many many people, kids and adults alike. they see THE DIVERSITY out there.
conversations i've actually had with doctors:
me: aspergers is being considered /ive been diagnosed with aspergers
dr: oh, ive worked with aspergers people before, you dont have aspergers. it's getting overdiagnosed. like ADHD
me: how many people with aspergers have you seen in your practice?
dr: a couple of patients
me: how old were they?
dr: they were kids
me: what gender were they?
dr: male

b. if the specialists -- who are publishing studies, developing diagnostic tools, releasing a book this year, advising organizations about autistic spectrum issues, and even more specifically doing this work regarding adults, and they care one iota about their reputations, why would they overdiagnose?? why would they want to invalidate their livelihood? they aren't fucking tarot card readers telling everyone who walks through their doors that they have incredibly special energy that connects them to the universal vibrations in a powerful way.

c. the preconceptions and stereotypes are so rampant in the general medical community, many people with aspergers or other subtle enough neuro issues are being ignored, actively dismissed, and untreated, left to suffer. 'hey doc, i have trouble hearing and am really sensitive to sounds. english often doesn't sound like english. i can't really have conversations in groups of more than one other person. im considering some kind of auditory processing problem' ... 'no, well auditory processing disorder is a developmental condition'

 FUCK YOU!!!!!!

d. the general public. holy crap, autistic people are popping up EVERYWHERE! this is excessive. you are normal, why are you doing this? to quote another pdoc: 'you just want this [diagnosis] as an excuse to not have to change' (translation: accept that you're borderline - that is why you want this excuse)..

it's dismissed as hypochondraism, it's sort of the old "not autistic enough" problem (see http://ballastexiste...tics.org/?p=579). what are you, inside my body? did you follow me around when i was a kid? do you even know how i was bullied? do you see my stimming in private? am i not autistic enough because i can control my stimming most of the time in public?

"more functional" people water down the condition, so if people think aspergers is "me" then their more "severely" aspie/autie kid won't be understood. their difficulties are somehow invalidated? maleungulatedung.

and of course, aspergers/autism stops when you reach 18. and new issues dont come up as a person ages. and getting diagnosed as an adult is BS. and making eye contact rules out a diagnosis. being able to interact with less awkwardness in very specific interactions rules out a diagnosis. having any NT skills, which, as an undiagnosed person growing up i had to learn, ON MY OWN, and only partially succeed.. well that rules it out too. you can't have adapted at all, since neurological conditions are permanent and unchanging. and being able to do something, but sometimes not being able to do it is just deliberate 'performance'.

and you can't be. because you have empathy.

maybe my family will never accept it because it touches a nerve (um, maybe they have aspergers?)
i dont know exactly. i just know that the more i talk to aspies the more i see myself in how they describe their experience (this happened first on CB), and talking to these professionals, when i talk about my issues, they are incredibly validating about that. they GET my social difficulties, sensory problems, etc - my own unique constellation of things.

i could go on.

Sensory Defensiveness - The Shower

2009-08-12T10:05:00.006-04:00

Ugh, problems showering. This is possibly a problem for you, or a loved one. I know people who seem to think that not showering is always a depressive sign of lack of self-care. I admit it can be this for me sometimes. But I find more often it is that some days (or weeks) I find showering difficult if not painful. I'll describe my experience here, in slightly itemized and slightly disorganized form:

It's worse if it's cold. Cold is relative though, and my tolerance for any air movement is pretty much nil. First obstacle: removing clothing.

The feeling of clothing moving across my skin, interrupting the direction of all the little hairs on my body, that can be already a Bad Sensation.

Getting in - must start water first and warm the water to the right temperature. My shower at the moment is ultra sensitive, and I literally have millimeters of adjustment room or it's too cold or too hot. Too cold is worse. At overnight camp when I was growing up the shower was pretty much COLD.

Pressure. Can't be too hard, or the repetitive spraying is painful. It can feel like all these needles on my skin. Obviously too little is bad - but that's not a sensory processing problem, it's more pragmatic, like how do you rinse the soap out of your hair.

I had a bath mat that didn't fully dry out. stepping into the shower was a cold and squishy experience. This makes my whole body tense up. If I run the water beforehand, it at least would warm up. It got moldy and I tossed it. The new one is better.

Must wet hair first. If hair is not wet, the body doesn't feel right. The scalp tingles and jumps no matter what I do, but if the water temperature is right, this is pretty much the best part of my shower.

Shampoo first. As much as I try to massage the shampoo into my head, it doesn't quite get there. If my nails are too long (ie any quick on them at all), I have a hard time doing this, sensations on the scalp make me want to scratch it! Smell of shampoo is important. Sometimes it's just way too strong. Often it is.

Hair falling out. Hair on my body. Eeek. Trying to get the hair from going down the drain, I pile it up on the side. This is so ICK and the feeling of the little strands between my fingers, on the surface of my skin, and the feeling of trying to pick it off. It is better than pulling out a giant soap-laden mound of hair from the drain (which is happening anyway. gah.)

The cold water that comes out of the lids of the shampoo and conditioner bottles. Thhhhhhh.

I'm glad I can't see the slime and bits of lint and whatever else in the tub (I'm very very myopic. This might change with laser eye surgery, which I'm considering). If I feel them, I gross out.

If the shower curtain touches me -- as it did today, oh boy. It's like a SHOCK through my system. Literally like a painful jolt of electricity. Takes a while to go away.

Must soap body in particular order. I might go back to using the bodyshop skin towel I have, I think it actually is a bit like therapy, stimulating the skin all over, erasing all these feelings attacking me.

Must rinse in particular order. If I miss a part, I have to start again. If I use a soap that is moisturizing, I feel like I can't wash it off. So the rinse routine happens more than once.

Conditioner must also be rinsed fully, which it often never feels like it is. Conditioner must stay on head while soaping body. Hair must not touch the water. Body must stay in water.

I don't like soap behind my ears. Can we say potatoes? Or potahtohs?

Must rinse hair as the last thing in the shower. Head can NOT be cold. Head then gets wrapped in a towel. I used to have 1/4 inch hair. This was ideal - hair dripping on my body is really intolerable. My current long hair is difficult in this way.

Any air that hits wet body is Bad. So body gets wrapped in towel after head.. but feet must be dried before stepping out. Stepping out must be onto a bath mat. I do NOT like wet feet on tile or linoleum. SQUISHY SLIDY ICK!

Getting clothes on if the body is wet at all won't happen. I have a pretty intensive drying routine. Might try to invest in a thin housecoat (like some spas have, those white ones?) because hair must be done before clothes go on (wet clothing from dripping hair is Not Acceptable). Brushing hair can feel good, if the brush is right. But the brush brings the water out of my hair. It's a peril of long hair.

The body feels good after a shower, no doubt. Sometimes I can get in a space where I feel so gicked out from not showering that showering feels impossible, but if I showered, it would feel more possible because I'd feel less gicky.

So, to recap: Cold = bad. Slime = bad. Squishy = bad. Prickly water = bad.

But yeah, I gotta shower.

What is this blog? Do you want to box me in?

2009-08-10T09:07:00.003-04:00

I don't know what will come out on this blog. I have no mission, except joy. If you're searching, asking the neurodiversity vs cure question, I hope you don't find it here because I think nothing is so simple. I have problems I want to solve, but my core essence is who I am; it's wonderful! I practice yoga, I cultivate joy (hence the title of this blog). I am not normal, and I ACCEPT that, whatever label I have. I believe accepting others is tantamount.

A casein, gluten and soy free diet is something I am trying to do. I use a small amount of medication to regulate processing and social anxiety. I think ASD spectrum contains so much diversity that one answer just doesn't fit. I think that environmental factors can't be overlooked; I think that the sensory problems associated with autism are a huge part of my behaviour, and I experience my sensory problems as being greatly improved by changes in my diet. I would like to reduce my corn intake. Corn is associated with C-13 isotopes - literally a heavier carbon atom than what naturally occurs in the environment. I would like to avoid industrial agriculture.

Yoga helps me with sensory processing. Think joint compression.

I would like to learn how to read social contexts better so I can feel confident to be in the world and do well in my yoga teaching career. I want to improve my executive function. I want to cultivate my special interests and lose my internet addiction. I want to take care of my cats and myself and my fiance-soon-to-be-husband. I'm not sure how well i'd do on my own, as I've always had family support.

But I wouldn't change myself for the world! I'm a great person. I have a lot of compassion (which a lot of aspies do). It's so painful that I can't express it a lot of the time. I "soak" up the emotions in a room. I feel intensely. I've spent enough time trying to change myself for the world. IT DOESN'T WORK.

I spent so long wondering what was wrong with me, stifiling myself, fighting to fit in, fighting to be normal, taking medications to try and erase how I needed to be, depressed because I couldn't be myself, suicidal from too much medication, and on and on and on and I AM TIRED. So tired.

I've seen the horrible things some curebies have published about the neurodiversity community and the individuals in that community. I suppose I'm more on that side than not; chelation, restraints, ABA (what I've seen of it, however fucking fun it's supposed to be), and the whole world of fluorescent lights and perfumes and the constant noise and pollution .. all of these things are torture to autistic people.

As much as I've felt burned out and unsupported in being who I am, I am glad I didn't get put through the machine that is killing the spirits of so many.

However there are things that I want to change. I want to reduce my overwhelm and burnout. I don't think these things are genetic in whole, except there are patterns in my family, including sensory problems and food sensitivities and social anxiety that I can identify. But I've studied anthropology and specifically the trope of genetics. It's not everything. In fact it's not most of it. If you eliminate this genetic variation, you will eliminate people whose "gene(s) for autism" never get turned on. I hope that the genetic research gets to a point that scientists and those lobbying for gene therapy or early detection realize that solving the 'problem' through gene solutions is equal to genocide. If all this makes me part of the ND community, I'm much happier there than torturing myself with lack of self-acceptance and continuing to feel "wrong" in the world.

Peace.

Aspie mini-golf!

2009-08-09T20:10:00.005-04:00

In case you're wondering, there isn't anything different in the rules for aspie mini-golf. I went to an event today for the Aspergers Society of Ontario, it was a fundraiser at a local indoor glow-in-the-dark mini-putt place.

My oh my. I left late, because I was nervous. But I got there at maybe 1:30 and the event was 1-4pm. Made sure I had my earplugs and a little clonazepam.

When I got there, it was immediately overwhelming! There were other people talking to the man at the desk and so I kind of just stood there. Eventually I got to buy 50/50 tickets and I got to meet Michael, the person I'd been corresponding with on twitter about this event and the 5K Charity Walk/Run happening in September.

I looked at the silent auction stuff. Lots of cool stuff, but then I saw... weighted blankets!

I played mini-golf with Greg and Jay, the other two adults who showed up. I won the game, even got a hole in one :)

I decided to put in a bid for one of the weighted blankets. I won it! It's a spiderman blanket, and i'm not sure how much it weighs exactly, but I got it for a great price. That was really exciting!

I also chatted a bit with a woman who has a teen daughter, she was eager to chat with me because I guess they don't get so many women through there (being 1:4 ratio and all). I found that interesting, and it was nice to share some of my perspectives with her about my childhood and growing up, and what specific things are challenging for me. I would've liked to talk more with her, and perhaps I will because I gave her my card.

I wore earplugs about half the time I was there. There was all this black light and glowy stuff, and the area where they have groups had these laser thingies which were kind of difficult to deal with. It reminded me of a snozelen room. But it was definitely noisy, with the music, the games, the kids. One of my main sensory issues is auditory. The earplugs made it possible for me to have conversations with people and not get near meltdown. A few times I had a pretty good startle reaction from a siren or bells from one of the arcade games though.

It was great to go out and meet fellow aspies. The staff with Aspergers Society of Ontario are great, and I felt welcomed there. It was nice that I got to attend an event so close to my house.

When I got home, I felt somewhat overloaded, but that's not so unusual. As happens with overload, I was sooooo sleepy, so I curled up under my new spiderman weighted blanket and had a great nap. Ahhh.

Hi..

2009-08-09T19:12:00.001-04:00

I figured I would do the obligatory hello world post before getting into blogging about all the love, pain, joy and adventure of my life.

This is one incarnation of me, Karen. I'm currently 32 and I am recently diagnosed with aspergers syndrome. I meet the criteria in the Diagnostic and Statistical Manual (DSM) and I have significant issues with sensory processing and executive function. I am an artist, yoga teacher, geek, crazy person, cat lady, bird watcher, and some-time academic.

Much of "me" will come out here in time, so I think I'll just get right to it. Welcome.