Wednesday, October 14, 2009

Autism and Who I Am

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.

Friday, August 28, 2009

change and acceptance

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?


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

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.

Friday, August 14, 2009

being dismissed

[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.


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 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.

Wednesday, August 12, 2009

Sensory Defensiveness - The Shower

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.

Monday, August 10, 2009

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

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.


Sunday, August 9, 2009

Aspie mini-golf!

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.


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.

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