The Alternate Lexicon
Currently viewing the tag: "asperger’s"
I stopped being friends with Alice when she blew me off.
Alice and I met within days of starting at Mary Baldwin. We auditioned for and joined the Madrigals together, and just hit it off immediately–similar senses of humour, both smart and curious about the world, and rather similar politics (though her Catholic homeschooled background made it hard for her to admit she was liberal, let alone progressive). She was one of my very best friends for the three years I was in college. There were regular rumours we were dating, we were so close.
I left and went to Australia and my girlfriend (much to Alice’s annoyance) and tried to keep up our friendship. I wrote in my then-blog, I wrote emails, I called a handful of times. The burden of maintenance was mine, but it was okay: I’d get back to the US and see her again and our friendship would properly pick up where we left off.
Except that it didn’t.
Alice and I made plans as soon as I knew I’d be back in town. Kitty was with me. We’d meet for coffee and catch up and everything would be great again. But Alice didn’t come for coffee; she blew off our date entirely to make an “emergency” trip for cold medicine for her (adult, able bodied, car-owning) roommate and then never rescheduled.
I put my foot down. Alice had blown off small things with me in college, and I’d always forgiven it. I knew that I liked more concrete plans than she did, and that she had many friends who were cooler than I was, so there was always a chance of being left for a better time. At the end of our second year, she decided unilaterally we shouldn’t be friends anymore since I was just going to leave anyway and she was bad at keeping up friendships; it was only after I pleaded to keep my best friend that we stayed close for the last year. Being ignored to baby the person she lived with was the last straw for me, and I cut Alice out of my life. We’ve exchanged emails once since then, which were unproductive, and she emailed me in September. I haven’t opened it. It’s been two and a half years since I lost my best friend.
Stina and Dylan were there when we fought: Kitty and I were staying at their house on that trip to Staunton, before I moved back to my college town. They were there when Alice and I fought over email–hell, Dylan was the one who opened the first email for me and read it, so he could warn me if I wanted to read it or not.
I’ve known Stina and Dylan since about a week into my first semester at Mary Baldwin. We met when I joined the queer/feminist group on campus, which Dylan and I would eventually co-run. They were my other best friends, complimentary matches for me and each other. It was a little easier to keep up with them when I moved, because calling one meant getting both, and they opened their house up without hesitation for us when Kitty and I arrived in the US. They invited me to live with them while I figured out what the hell I was going to DO with my life.
I don’t know how to write the collapse of our friendship. It’s raw and it hurts and none of the paragraphs I’ve started in this space are accurate.
I felt left out, ignored. I saw patterns in their treatment of me that made my heart ache with loneliness. I watched them each grow more unkind and reassure each other that it wasn’t so. I felt entirely unrespected. I couldn’t talk about it, too afraid to bring up small hurts but dwelling on them endlessly until they became big hurts and then I’d explode. But by then they’d forgotten the small hurts and I was making something out of nothing. For a psych major, Dylan is fucking terrible at introspection.
I was told, explicitly, that I was not autistic because i didn’t match his expectations of what an autistic person should be. I was told I was a lesbian, and any attempts to restate my actual identity were dismissed as trivial. I was told that genderqueer people don’t exist or are just indecisive. I was told I was petty, and rude, and embarassing to take out in public. I was told I was mean and hateful. I remember every fucking word that was said to me. They inform my self esteem and my sense of who I am and sow seeds of doubt deep into my heart.
We fought again and again. My therapist told me they were poisonous, no good for me.
I wish I’d listened to her. I wish I’d been able to listen to her. I defended them vigorously and angrily. How dare she say that about my only local friends?
I moved away in April. It was for the best; they hurt me again and again and while nothing seemed to change on their side, I felt broken and tired. I ended up here. I saw them in September for their wedding.
“Come for Thanksgiving. We miss you!”
So I asked off for Thanksgiving. I asked when they wanted me to come up. Two weeks ago they broke it to me: I’d be welcome to come, but they had no guest bed and were planning to spend black friday on a prolonged date.
Wait. So I’m welcome to come up, but I have to spend one of 3 days with them by myself because I am less important than them–married to each other, living together–having a date.
I didn’t go. They got their black friday together. I got time to myself without being touched and harassed and quiet. Lots of quiet.
“Dylan Grey had an awesome black fridate. All of my shopping is done. ALMOST. Lovely day with Christina Scott Sayer Grey, with delightful guest appearance by Megan Kolano. Tangled was GREAT. Bella is cuddly. Dylan out!”
They let a friend join them after all.
I think this is the point where I say I’m done.
Tagged with: ableism • ali • apologies • asperger's • autism • depression • disablism • dissolution of a friendship • friends • frustrations • kit • loneliness • meta • therapy
I have a massively awesome idea for a DM Cornish/Half Continent fansite.
I have the means (ish) to create it.
I have the desire to do it; in fact, it is fast eating up a lot of my headspace in a dangerously compulsive sort of way. Actually, the Half Continent in general has, I must acknowledge, reached a level of obsession only known to autistics and 12 year old girls.
What I’m lacking is the spoons. I’ll need to learn new coding programs to create what I want to create, and then there will be a lot of data imput into those programs. I know I have a strange mix of ability within one specific executive function (perseverance or grit)–for short-term projects, I’m okay, and I’m one of the most persistent people I know for long-term goals. There’s even a research study that I participated in, with people I know to corroborate my answers, that noted I have more grit than most people my age (I blame autism, as with so many things). But medium-term stuff…eh…I kind of have a history of terrible failure. Like this one time where I tried to write a master’s dissertation. Ha.
So I have this history of not being great at doing medium-term projects. Based on my completely fabricated estimates, this would be one such thing. The only thing worse than not giving into my compulsions and starting this project would be not finishing. And so, I procrastinate, which makes the compulsion part worse, but puts off my fear of self-caused failure. But procrastination also provides some measure of stress relief I don’t get during my work week (update: still like hell), so it’s a coping mechanism, too.
Basically, living in my head sucks right now and I would like $10,000 so I can quit my job and move immediately to Melbourne. Please.
Tagged with: ali • asperger's • autism • fanfic • frustrations • melbourne • meta • monster blood tattoo • neurodiversity • research • utter pedantry
I loathe person-centered language.
Part of my job at work is supervising residents in their work setting (if you want more information, feel free to scroll down to the locked post). They do a variety of jobs, and one of those is making the training binders for new employee orientation. This is a new task for my team, so it’s impossible for me to judge how independently they’ll be able to do it with time and practice, but this first lot of 15 needed to be done by yesterday and it ended up being mostly staff doing the work. Since I greatly enjoy doing this sort of menial paperwork–sorting, organizing, labelling, filing–I was very good and found it more enjoyable than most of my job.
The binders are a drastically better collection of information than I had at my previous job. There are sections about developmental disabilities, cultural diversity, and appropriate teaching strategies for adults. There are a few standout ideas in there, like an article about the differences in language use between the people who live in the group homes and staff, and how it is intensely othering.
There’s also a big section on using person-centered language, and having stared at it for days and days while doing these binders and then having a little nudge from the internet, I feel like I now have a simple explanation for why person-centered language unequivocally sucks.
Person-centered or people-first language is this idea that we should phrase things with the person placed before the disability:
Person with autism, not autistic person
Person with intellectual disability, not intellectually disabled person
Person with hearing loss, not D/deaf person
Person with vision loss, not blind person
Some disabilities lend themselves more to one construct or another–person with CP sounds pretty tolerable to my ears, while CP person or cerebral palsied person sounds weird (Kit, I welcome your thoughts on this specifically). I don’t like any of the adjective forms of Asperger’s that have been constructed (though it’s sort of moot since I think autistic is a better descriptor for the whole spectrum anyway).
At first glance, this idea doesn’t really bother me. I’ve felt pretty neutrally about it for a long time–I couldn’t see how it was harming anyone to use unnecessarily long constructs when the shorter ones were just fine and inoffensive, but whatever. If someone wanted to “put the person before the disabilty” and that led them to treating disabled people as equals, then fine.
But my work is inherently about how we (society-general we) can’t treat people with disabilities as equals. Every person I work with has a documented intellectual disability, and most of them have multiple disabilities. Because of this, they have been deemed unable to be their own guardians, their own caretakers, their own adult people. It’s not that I think needing assistance–any level, from mild to total–makes one less of an independent adult, but few have actively chosen of their own right to live with us. They are there because they have been “placed”–deemed too unable to learn, adapt, care for themselves that they must have caretakers whether they want it or not–rather than because they decided that they want help.
I think person-centered language actively harms them, and me, and all of the disability community.
Person-centered language claims to be about people first, but why would we need to make awkward linguistic constructs if disability was a neutral concept? Saying that we put people first means that you think disability is shameful, in need of being hidden or removed, that you are unable to think of people who are openly disabled as people. Saying I am a person with autism rather than an autistic person denies that autism is a value-neutral descriptor for the way I think and experience the world around me. It tries to make autism into something separate from the “real” me (and that leads to dangerous curbie mythologies and “treatments”), into something that is bad. Saying we are people with disabilities rather than disabled people shows that “disability” is a dirty word, something bad and to be avoided, rather than a word that describes our interactions with the community because of our atypical strengths and weaknesses. Saying we are people with disabilities rather than disabled people removes the burden from society to make adaptations and accomodations and places it upon us.
Using person-centered language ends up devaluing the person because it attempts to remove a central part of who they are and make it negative.
Unfortunately, I would probably be fired if I made some key edits to the binders, so they’ll remain as-is. For now.
Tagged with: ableism • ali • asperger's • autism • disablism • kit • neurodiversity • utter pedantry • work
I’ve been thinking about inertia and perseveration lately. I thought I’d been thinking about depression and my own early signs of a life-long sprint from black clouds, but apparently the part of my brain that ruminates without my knowledge was busy at work on something altogether separate.
I’ve talked about inertia before–I should probably start using a tag for it and the other things I mention regularly. And I’ve talked about perseveration, and how I think it’s a useful, adaptive process in working through executive function difficulties (see the link to rumination).
A quick recap: inertia is the tendency to keep doing what you’re doing rather than change paths (with a nod to Newtonian physics for the basic concept), and perseveration is going over something endlessly, either because it provides comfort, stimulation, or a solution to a problem or otherwise fills some need.
I think they are the same thing, or facets of a larger single thing. And I think that thing is at the heart of difficulties in choice making in autism spectrum disorders and at least partially to do with why concrete plans are necessary. I’m not sure if it is part of the larger executive function or a related but separate thing.
Inertia has negative connotations, at least for me. Inertia is continuing to do something that isn’t really great for me (like not eat or not sleep) because it is easier than the alternative (procuring food or getting ready for bed–which usually entails saying goodbye to Kitty, something I loathe). Inertia means staying in bad jobs because it is easier than finding new ones. Inertia means multiple degrees in a field which doesn’t hold a career or major interest to me, because considering a change took too much thought and spoons to be done at a pace that would have allowed me to change.
Perseveration has a mixed connotation. Perseveration is going over and over songs until I know them by heart and can sing them pitch, tone, and word perfectly. Perseveration is almost always thinking about one of the few topics I am especially interested in, like autism or MBT. Perseveration is the way my brain works to process complex information by letting it tumble around and then finding notable, interesting things in what that information sticks to inside my head. Perseveration is eating the same food for three, four, five days in a row all. the. time.
Both are the inability to change topics or actions without a strong desire to do so. That desire can be internally or externally motivated, emotionally or physically motivated.
This inability to move off a single track can make it difficult to impossible to make decisions and choices. I know that the DSM is too strictly categorized for this to ever happen, but perhaps autism should be considered partially an anxiety disorder.
I wanted to buy a computer–a laptop. I researched laptops for months, learning about screen types and the inner workings of a machine, learning about various OSes and interfaces. I learned what my price range would need to be to get something like what I wanted (a tablet with the ability to write directly on the screen). And then I didn’t do anything. I knew what I wanted, but I was absolutely paralyzed by the idea that as soon as I made a choice a better, cheaper, more awesome choice would appear and thus be unavailable to me. I finally bought my laptop only because it was on woot that day and the price was about half what I’d been prepared to pay previously. I needed that external limitation to make a decision: woot is only one item per day and there is no guarentee the item will ever turn up again, the price is drastically lower than anywhere else online, and there is a limited number of units available–but you can’t tell how many until it’s sold out. I’ve had this laptop for about two years now and I suspect I would still be dithering about getting the BEST LAPTOP EVAR had I not been constrained by this.
Having choices makes choosing extremely difficult when you tend towards this style of thinking. The more choices I have, the more likely I am to fall back into the holding pattern of inertia and just not choose. When I am hungry, I need to have explicit options rather than an open ended “what do you want?” because the latter will only lead to frustration and upset. (Kitty, in her wisdom, knew this years and years ago and tolerated my saying over and over that I hated planning meals and that it made food unappealing, and to her I apologize again for being a shit. She was completely right and knew me better than I knew myself at the time.) Having a schedule means I actually get things done. Without, I am likely to spend all day online, playing games or looking at tumblr.
Unfortunately, none of these things allows me to write coherent blog posts sometimes!
Tagged with: ali • asperger's • autism • frustrations • inertia • international relations • kit • meta • neurocognitive science • neurodiversity • perseveration • research • utter pedantry
I find that when people on the autistic spectrum fail to understand someone’s reaction, this is seen as ‘lack of empathy’ – but, when someone who is not on the autistic spectrum fails to understand the reaction of an autistic person, this is seen as a case of ‘autistic people are a puzzle’ and a justification for representing us as a jigsaw puzzle piece.
I’ll just leave that there. I read it here.
I go in tomorrow morning to fill out paperwork for HR to begin my new job. I’m waiting for Stina and Dylan to do some reference letters and send them along, but I’ll get them when they come–no major concern.
My major concern is falling into a pattern of presumed incompetence. It was coincidental that I found this blog post today about the least harmful assumption (presuming competence even when others do not) as almost all of the people I will be working with have been diagnosed with intellectual disability (and many of them with autism). I need to work and remember that their diagnoses may not be correct and that any communication is welcome. I hope I’m up to the task.
…is that I like spreadsheets, organization, and Kate Miller-Heidke.
Just got done making a spreadsheet that shows the titles of the songs from which I’ve pulled titles, the songs in the official canon I haven’t used yet, the songs that are official or semi-official canon but are covers, and the demos which have any sort of name. This is actually the third spreadsheet of its sort, as I have one keeping track of the number of times I use a song and one that lists the song, the lyric, and the date.
So I’m feeling a bit compulsive and pleased, now. And tired. Tried to go to the library, but the lights are made of some sort of migraine-creating forcefield that also happens to emit visible light, because within ten minutes my eyes and head ached. I feel sort of spoon-drained now.
I’ve been blogging here for a year, and nearly a hundred posts.
There have been two Kate-lyric exceptions (both for MBT fangirling) and this will make my 97th published post. In this time, I have:
-Used lyrics from “Caught in the Crowd,” “Dreams,” and “The Truth” six times each (fun fact: I don’t like “The Truth”!)
-Used lyrics from “Blah Blah Blah,” “Day After Christmas,” “Our Song,” and “Out and In” five times each
-These seven songs account for 39% of my post titles
-I’ve used 34 songs, 32 of which are part of the official discography (including Elsewhere, Kate’s previous band). Including Elsewhere there are officially 54 songs (not including multiple releases or versions of a song), and I have an additional 32 or so demos. I think I’m going to have to make an effort to use all of the released songs for a title in the coming year. No promises.
In less compulsive, more personal news, I’ve had a bunch of interviews for jobs. The one I like best is for a group home and assistance organization in Chapel Hill who work with kids and adults with intellectual disabilities, developmental disabilities, and some neurological disorders. In practice this means a lot of people on the autism spectrum, some with Down Syndrome, some with CP, many with more rare disorders and disabilities, and a huge variation in levels of assistance needed. I knew it would be a good fit when the interviewer went off on a long tangent about how their clients are people and have every human right we do (I guess I passed for NT yesterday), even if they also need some help with ADLs or holding down a job. He used some language I only hear in the disability rights movement and stressed that you have to respect everyone as an individual or it would never work. I have a follow up interview tomorrow (after the first yesterday), so hopefully it works out! I’ve also interviewed for an in-home counselling position, and didn’t get a job at a local bookstore–but I did get an interview at a sister store later this week.
AT NO POINT DID I BREAK DOWN INTO SOBS OF FRUSTRATION OVER THE AMOUNT OF MONEY I NEED TO SAVE TO SUCCESSFULLY MOVE TO MELBOURNE.
I credit the cat and his soft, soft tummy for this. Little known fact: sticking your face in a cat’s side and breathing deeply is incredibly good for destressing.
I’m looking for something that will keep my brain occupied. I love anagramming and the last phrase was very successful. I want a two or three word phrase (maybe four, if one is an article) that is easy to remember and has 20-25 letters. The last one was “the very hungry caterpillar” and it worked really well. Suggestions?
Grading People from Rolling Credit on Vimeo.
A short commentary on the use of the terms “high functioning” and “low functioning” as applied to autistic people
My attention span is currently at a level I would describe as “kitten.”
I’ve known for a long time that my attention is directly correlated to the interestingness of the material–this isn’t unusual for kids identified as gifted (nor the adults they grow into), or anyone on the spectrum. In fact, it was this extreme hyperfocus that first had me questioning if I might be on the spectrum as I read tales of kids and their encyclopedic knowledge of topics and saw myself. This one time, I drew the same picture with only minor variations a couple hundred times; I was nine. I suspect I could still draw it.
I’ve also known for a long time that if I’m otherwise engaged, I can pay attention to topics of less interest with some reliability. In a school setting, for example, I’m usually really strongly into one class and then have varying levels of caring about the others–just like anyone else. Because of that high interest class, though, I have this sort of carry-over attention effect making it easier to pay attention to other material that is not as engaging for me. This has led me to the conclusion that I do well in moderate to high stress environments, but yesterday I started thinking (a rare thing these days when my mind lands on a topic and only stays for a few minutes at most), and this may not be the case.
There are different kinds of stress. Google thinks there are three–acute, episodic, and chronic–but that’s not what I mean. Those factors certainly play in, but I think stress can and should be divided by what part of you it engages, not just the length. Intellectual stress would be things like heavy schoolwork, complex reading material (fiction or no), non-rote professional work, puzzle solving. Emotional stress is identifying your own and other people’s feelings, social cues, working with other people. Physical stress could be identifying sensations (like needing to pee or being hungry), things that involve physical labour, or enduring discomfort (like working in a too-cold or too-hot place). Some combination of three things creates the stress, and that can then be chronic, episodic, or acute.
By this system, I really like things that are chronically intellectually stressful, with low levels of emotional or physical stress. I don’t like to move or worry about what my body language says. That is…not how I would currently describe my life. So even while I feel stressed, worrying about money and the cat and immigration, it isn’t the sort of stress that puts me in a position to spend a lot of time thinking. Those stressors are not comfortable for me, so they use up many more spoons than the stressors I like–and because I’ve wasted those spoons, I can’t do the things I enjoy (like reading scienceblogs) which could potentially refresh my spoons.
When I’m stressed–in the bad, not comfortable way–my memory and attention are spotty. I need to have a constant stream of intellectual information coming in–and going out, such as via blogging–to feed my own ruminative processes. Not only do I think they are a good thing, I now think they are essential to my well-being. When I am taking in enough information to have a viable ruminative background process going, my whole mind is working in concert, concious, unconcious, and memory. Being able to ruminate this way requires a precise memory, which is the first thing to go when I’m under stress (I often have no memory of meltdowns, for example–they’re just missing or I have a handful of photograph-like images).
I have been incredibly, risably forgetful lately–and lucky Kit doesn’t mind. Things we discussed multiple times have slipped my mind as if they never were. There is no sense of loss, of having forgotten something. My memory is not recording in the first place. Even when she reminds me, often with my own words, they feel new, unseen.
We talked about it yesterday, and I think it shifted my brain into the right gear to ruminate, because it hit me this morning, how all of this is connected for me: I need intellectual stress (and preferably as little of the other kinds as possible) to function well; I know alternate sources for this when I am not in uni; when I do not get this stress I become unable to seek it out because my will to live attention span grows shorter and shorter the longer I go without; this correlates with an unusually poor memory; these things are because with information coming in, I am able to ruminate properly (like any good ruminant and/or monster), because it is an adaptive and helpful process for me rather than being a destructive way to rehash bad memories or thoughts; therefore I have to just force myself to do something brainy, because it will sort of kickstart the whole process and I will stop feeling leaden. Which is…a helpful conclusion, and hopefully writing this will have done enough kickstarting I’ll no longer feel like my brain is dribbling out my ears slowly and painfully.
My name is Ali, though sometimes it's Eliot.
I have many tumblrs, which you are welcome to also visit:
The Polite Yeti - My personal tumblr, full of silliness.
Fuck Yeah, Kate Miller-Heidke - the only active Kate fan site, which is baffling.
The Branden Rose - the only active Monster Blood Tattoo fansite, which is less baffling.
I also have a semi-successful etsy shop, which you should visit, below.
Please buy things from me:
A brief history:
