but lately, part of me just crumbles
every time I hear that melody

I have not gotten into the choir for which I auditioned. This is an unprecedented thing, with the exception of a middle school all-state choir that I knew I wasn’t getting into in the first place. I don’t know how to react to it. I was counting on that choir to be a place where I could make friends. A friend. One would be nice.

There’s a choir here in town that I would love to be a part of, but whose audition requirements essentially make it impossible for someone like me to join. I’m not being euphemistic about autsim stuff, though–I’m talking about musical experience. I am a chorister. I don’t sing solo pieces and never have. So requiring that I have a prepared aria means, well, I won’t even audition, because I have no means of preparing; my sheet music reading skills are substandard for the sort of music I’m capable of performing. Further, I’ll own that my voice often sounds reedy and thin alone, but I can bolster a chorus and blend well–and how can a director tell that from me doing a solo piece? Surely one doesn’t want a chorus entirely made of strong soloist voices? There need to be those like me who can shift from part to part and provide a depth of cover.

I hate it here.

I’m at a bit of a loss for what to read online lately.

In May, the Autism Hub disbanded itself. One of the bloggers who had been a hub member was bullying others on the hub and many of my favourite bloggers removed themselves from the group a few days before it was officially disbanded. I’ve tracked down most of the blogs I enjoyed reading there, but find it much more difficult to keep up to date with them now. I’ve tried using an RSS reader, but I’m not very good at remembering 1. to add blogs and 2. to visit the reader to see if they’ve posted. The Autism Hub had been a really great website for a few years, a respository of science-based blogging about autism by people on the spectrum, parents of kids on the spectrum, and professional researchers and educators. It introduced me to many of my favourite blogs. After the hub came down, most of those bloggers have stopped writing.

In June, Jezebel got a new EIC. With her came bannings, destarrings, and general discord. I stopped reading. I’ve been to groupthink off and on, but I haven’t been on the main page much at all. In the past two or three days there’s been a few articles of substance, the most worthwhile writing in months. I’m really hoping that this trend will continue and Jez will return to its former glory as my absolute favourite website. In its heydey, Jez was full of smart, feminist writing with an eye to intersectionality. It discussed the political and personal with humour and research, and the commenters were snarky without being mean (except to trolls) (this is a difficult line to walk and one they’ve lost entirely). Corrections were issued if the Editors made an error, often quickly. The new EIC calls commenters assholes and seems to encourage bodysnarking.

In July, ScienceBlogs had its own implosion. I missed it; as I’ve noted before, when I’m feeling spoonless I can’t muster the energy for SciBlogs, even though it often renews my spoon pile. What appears to have happened is Pepsi bought a blog spot there without clear distinctions being made on said blog that it was a paid spot (Sciblings are invited and paid for their efforts, usually). Many of my favourite Sciblings have left the website as a result, though the Pepsi blog has been pulled. There’s a disaspora of science writing, now, and, again, RSS is not my friend.

Please, gentle readers, suggest places for me to read. I’m looking for political and sciencey blogs with a liberal, feminist bent, preferably explicitly anti-racist and anti-ableist. Hubs or group blogs are very welcome.

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.

Please allow me to begin with shouting. If anyone loves me $13 worth, I am SO EXITED.

Anyway.

I’m constructing a post about spoons and variability thereof and executive function, but, ha, I do not currently have the ability to construct this in a manner that is grammatically correct or readable. I will return to the topic when I can think in words again. It’s hit me that my first (FREE!) diagnostic session is this Thursday and I should probably link mom to some autism inventories so we can compare notes.

In my head
I repeat our conversations
Over and over
Till they feel like hallucinations
You know me:
I love to lose my mind

It’s less than a week before I have to leave Melbourne, and so much has changed.

I landed and was whisked away to the Windsor Hotel, a beautiful, historic bit of miniature castle, where we had a gorgeous view of Parliament and breakfast in bed and high tea.

We’ve been down to the beach…

And I’ve taken lots of photos of flowers around our neighborhood:

We learned a valuable lesson (and watched a damn lot of Glee):

We went to the zoo.

And then I learned about a medical program that will want me, no strings attached, in Sydney.

I want to go, very much, and could apply next year and sit the Australian version of the MCAT in February. We need to speak to immigration lawyers, I need to get Prosper cleared for immigration. Everything is suddenly on an impossibly fast timeline. I’m in a mild panic.

I wanted to maybe move with the wonderful Sarah to Baltimore, but I’m concerned I won’t be able to get a job that pays enough in just a few months in a new, big, expensive city. I wanted to move to Atlanta, though less than I did a couple months ago. I wanted to live with my mom, even though the idea mildly nauseates me, because it’d be cheap and require little effort. I’m not sure what I am going to do, but it’ll be something. So at least I’ve made the decision to act, and not let the inertia get to me–and that’s the most important step.

I have an invisible disability. You can’t tell by looking at me that there is anything neuroatypical about me. You might guess when I speak, though I put a lot of effort and spoons into keeping the conversation going and my tone appropriate (volume sometimes escapes me, but I’m usually WNL). If you do notice anything off, it will be in a complete inability to keep small talk going for more than a couple back-and-forth rounds, or the regurgitation of trivia only marginally related to the situation at hand (“Scots have red hair because of Viking settlers…”).

Up until a couple years ago, I had no real awareness of autism. My first introduction to the topic was in 8th grade when the county-wide “special” school was piecemealed out to the elementary and middle schools by group. My middle school became host to an autism-only classroom, placed in a trailer (about half the school was trailer classrooms) and only interacting with the rest of the students by sharing a lunch period. The students were all boys, and all non- or minimally-verbal. I was pissed off that I wasn’t included, because I misunderstood–I thought it was an artistic classroom (thanks, auditory processing!).

It wasn’t until I was in my 20s that I really learned about autism and had the terrible moment of self truth: shit, I am autistic.

You see, I grew up knowing there was something different about me. I was a target for bullying even through college, and work. I did not make friends easily and held the few I did make jealously. I was upset if my friends made other friends, because invariably they would not want to play with me anymore. I was exceptionally bossy because I needed to be able to control the interactions; playing with kids is hard because they do unexpected stuff and I could not handle the unexpected. Being bossy was my attempt to eliminate that element of anxiety. I was a very picky eater, both in texture and taste. I was gullible with peers and could be goaded or encouraged into bad behaviour very easily; I had no sense of what made a friend different from a bully if both were being nice to my face. I probably would have benefitted strongly from a visual schedule, as I needed multiple reminders to do things like chores (and, later, when I was in high school and college and had more control over my scheduling, homework and papers), but chafed against verbal reminders. I exasperated my parents with apparently selfish behaviour and a lack of social graces. I was distractable in classes and made numerous “careless” errors on work I knew and understood because something else caught and held my attention.

I was also hyperlexic, reading and writing by two and a half. I learned early that language helps, and used this to soak up information. I learned as much as I could about whatever I was interested in; my interests could last days or years. I played with dolls well into my teens (and have been carting my American Girl doll around with me still–she came with me to Australia and then to Virginia). I can still sing songs or parts of song word and note perfect that I learned for my fifth, sixth, and seventh grade choir performances, 15 years ago. I only need to go someplace once before I can get there again with few or no reminders or prompts. I could look at a map and visualize my path. I amassed vast amounts of trivia. I spent a lot of time alone, which gave me to the tools to really consider my self-conceptualization. I draw beautifully, and sometimes write well. I experienced the delight of synesthesia, my tastes and textures lighting up with colours.

All of these are things, states, experiences, emotions that I can look back and say “there was probably some autism involved in that.” I cannot meaningfully separate out autism and my personality. Autism has shaped who I was then and who I have become as an adult. Autism meant not looking adults in the eye when being disciplined, and being yelled at for insubordination for it. Autism meant sobbing when the boy I had a crush on “killed” the oil clay cat I made and kept on my desk in 4th grade. Autism meant being perfectly willing to taste pine sap when a girl in my class told me it tasted like maple syrup–twice. Autism meant not skipping a grade. Autism meant being able to hear perfect pitch in choir, even if my rogue vocal chords could not always produce it. Autism meant being teacher’s pet. Autism meant taking an overload of classes every semester in college, just because I could. Autism meant the small, private university I loved over the bigger, public university that had more academic choices–and, because of this, autism meant my best friends.

And yet, I didn’t know about autism.

Growing up, for me, led to a set of beliefs that I have had a very, very difficult time removing. I didn’t know that many of my struggles and achievements could be attributed to autism. Instead, I attributed them to two ideas:

1. I am bad and worthless.
2. I am ridiculously smart.

I grew up feeling frustrated with the world around me, and knowing that the world often felt frustrated with me. I often didn’t understand what was wanted of me, but admitting that and asking for help would mean I wasn’t smart, right? So I didn’t ask for help, and did things wrong, and then I was bad. It was a self-perpetuating cycle. To be not bad meant I needed to be able to do things properly, and I was smart, so I should be able to figure this out! And then I wouldn’t, and then I’d fail, and then my self-esteem would sink another notch. Self-esteem and the appearance of confidence are not the same thing.

Being ridiculously smart meant that it was okay I didn’t understand or particularly like my peers (it was mutual on both points). I desperately wanted friends, and when I was finally working out that bullies and friends are not, actually, the same thing at all, I consoled myself by remembering that I was smarter, better, more likely to succeed. I told them they had smooth brains. I sought out the company of adults and books and the internet–it was still pretty new, then. Being ridiculously smart was the only defense mechanism I had against my classmates, and I hung onto it with all my might. This was not a positive self-image. It was bitter and angry and filled with self-loathing. I could not be normal, so I had to compensate with the only thing I believed was of worth about me.

The thing about defense mechanisms one develops in childhood is that they’re pretty difficult to get rid of later in life. I’ve learned about autism. I make to-do lists and schedules and keep a planner. I write out my thoughts and make more lists and get post-it notes. I rehearse conversations, and try to take advantage of this strange, fabulous brain. I subject people around me to trivia endlessly.

And yet, still, if I miss a dose of my migraine medication, or forget to eat, or don’t call the bank to tell them I’m travelling for a month to Australia and could they please not flag my account as hacked for the fifth day in a row because I couldn’t remember to write the post-it note that would remind me to call, or I make a grave error with my friends, it all comes back and I am eight and I am bad and a failure. I can feel my self-esteem drip away, as if I was a watercolour painting put out in the rain. And if I am bullied at work, or forced to listen to misinformation, or interviewing for a job that I am ridiculously overqualified for, or rejected from a volunteer position because it didn’t occur to me that I could lie (or even just not disclose) about my mental health history, I can feel the irritation and self-righteousness boiling up inside of me. Damn it, I am too fucking smart for this, why can’t they see that and value the one valuable thing I have to offer? (And they don’t, because being smart is really only worthwhile when you can temper it with being sociable, and then we’re back to failure.)

You can’t tell by looking that I’m not neurotypical–not at first. Because I grew up without notions of neurotypical or autism or healthy self-esteem, you’ll get a carefully crafted idea of who I could be, if only I had been aware that I was autistic.

Even Blogging Against Disablism Day can’t stop the Kate lyrics.

To paraphrase Stina: either words have meaning or they don’t.

Let me flesh that out for you a little bit. I believe that words are impactful, and that our word choices reflect a combination of our backgrounds, our individual lives, and our education on a given topic. Becoming aware of one’s word choices and actively changing them requires acknolwedgement of privilege and a desire to mitigate that privilege.

There has been talk on Jezebel, a website I usually enjoy, about why words matter. We talk about why it’s not okay to use sexist language every day. There have been discussions about feminism vs womanism (especially in the comments section) and tokenism. Discussions are held about racism regularly. Fat shaming is verboten, and lengthy educational discussions are held by the commentariat regularly. It’s a pretty damn nice place to be out as queer on the internet (though it’s not quite as good about trans issues). We also talk about a specific subset of ableist language, namely eating disorders and body dysmorphia.

All of these are good things. Jezebel is a mainstream, very busy website run by paid bloggers. While there are safe-space websites to discuss these issues (Racialicious and Shapely Prose are both good places to start for racism and sizism, respectively), I think having them discussed in a busy, largely privileged place is helpful and important.

In my experience, a lot of people who are otherwise liberal and well educated don’t know a thing about ableism. Words that are ableist are part of many people’s regular vocabulary, and they never give them a second thought. This BADD, I’d like to maybe put the idea into people’s heads that these words aren’t okay.

There’s a thread of ableism in many Jez posts where other language could and should be used instead. I don’t think it would be fair to call out commenters, so I’m going to limit these references to posts which use ableist language, themselves. This is not a comprehensive list in any way–there are many words I omitted because I only returned one “official” (not commenter-written) result, and I didn’t put myself out looking for these words–if they weren’t in the first couple pages of results, I didn’t bother).

Schizophrenic: 1, 2, 3, 4

Retard/ed: 1, 2, 3, 4, (interestingly, Jez commented on the usage on Vh1 before)

Wheelchair bound: 1*, 2

Lame: 1, 2, 3, 4, 5

Bipolar: 1, 2, 3, (again, to be fair, there’s this, too)

Spaz and derivitives: 1, 2, (this is a very common slur among the commetariat, and I got sick of wading through those results)

Jez (rightfully!) gets upset when words associated with feminism are misused. The editors and commenters won’t stand for the misuse of words like “rape,” or “lesbian,” or “bitch.” It would certainly be nice if they would make this shift as far as ableist language goes, too. Unfortunately, I don’t anticipate that happening any time soon, since responses to noting ableist language, as recently as last week, have been angry and dismissive (to the tune of “Go find someplace else that will let you whine”).

*(A direct quote: “When you think of amputees, dwarves, people with Cerebral palsy, or wheelchair-bound individuals in sexualized situations, it seems wrong, doesn’t it?”)

For further reading:
Bitch Magazine
Feminism 101
FWD/Forward

April is Autism Awareness Month. Some of the hub bloggers have pointed out that awarness is only a baseline–yes, in some cases we do need to make people simply aware of autism and the broader neurodiversity of which it is a part. But in many or even most cases, awarness is not acceptance; it provides a convenient excuse to actually stop further learning (“I know all about autism, I read about it during autism awarness month! You can’t possibly be/know/think/feel X!”). This is a mindset I see regularly at my soon-to-be-former job: my coworkers are aware of mental health issues, so they feel no compulsions to further their knowledge in any meaningful way. This leads to harmful and usually incorrect stereotyping and actions which are not just unhelpful, but sometimes actively harmful towards the kids. This baseline awarness does nothing to help the autistic boy who tantrums all night because of sensory issues or the depressed girl who really does need to just talk to someone she can trust not to overmedicate her.

Emily suggested that people who are going to transform awarness into acceptance would do so regardless of their awarness, and people who won’t will not regardless of the amount of information presented to them. In my personal experience, this is absolutely true.

But, I also think this is true, and poignant.

Being aware is never enough to promote acceptance. Being familiar usually is. Yes, some people will always prefer to try to change others or refuse to believe there’s anything different about them in the first place, but I would like to think that really knowing people on the spectrum promotes acceptance. Familiarity shows that we’re human, and not really different than any other person in our needs and desires.

I think I might get that t-shirt after all, even if it is a bit pricy. I want to be able to show the people around me that they are already familiar with autism–they just don’t know it yet.

Jezebel posted earlier about loneliness, which got me thinking about loneliness and the difference and overlap between autism, introversion, loneliness, and depression. They all have some overlap, in the sadness one can feel about being alone, but they are also all dramatically different.

Introversion and extroversion are the endpoints of a spectrum all people are on, weighted towards the extroversion end (that is to say, many more people are extroverted than introverted; if a Kinsey-type scale is used with 0 being absolute extroversion and 6 being absolute introversion, most people fall in the 1-2 range). Extroversion is the state of being refreshed and energized by other people, crowds, friendships. Introversion is the state of being refreshed and energized by time alone. On my hypothetical scale, I’d say I’m about a 4.5 to 5–definite introvert, but not a hermit.

Autism is a type of cognitive style. It can be barely noticable or well-masked, or prevent most forms of communication. It is no more inherently disabling than any other cognitive style, save that we are not societally set-up to accomodate intellectual differences any more than we (really) are for physical differences. We assume that speaking, signing, writing–using words–is the ultimate goal of communication, rather than communication being the goal unto itself. We assume that whatever our existence is, all others must be unsatisfactory. We assume that everyone must have similar goals. We assume that everyone must have access to the information we have access to (like nonverbal communication or tone–but, funnily enough, this assumption when present in spectrumites becomes a symptom of a problem!). These assumptions as a society can absolutely be disabling for those on the spectrum, but the cognitive style itself is not. Autistics can be introverted or extroverted, though I suspect we tend towards the introversion due to sensory overloading and poor social skills.

All people–autistic, neurotypical, otherwise neurodiverse, introverts, extroverts–need connections to other people. It may be so difficult to overcome different cognitive styles that we go without, willingly or unwillingly, but we still need others to communicate with and recieve and give affection.

Loneliness is the gap between what we need, and what we get.

Introverts, if the comments on Jez are any indication, seem to think that they are above loneliness, because they need aloneness. I don’t think this could be father from the truth. Introverts need affection and respect and communication from other people, the same as extroverts. We all need these things, and perhaps this is another spectrum: some people need a lot and some just a little, and most people somewhere in between, a perfect bell-curve. What I think happens for those introverts who never feel lonely is that their personal connection requirements are quite low, and so easily met.

I need aloneness. I crave it, and seek it out. Being alone allows me to think, to perseverate, to relax, to experience all of the emotions I have collected over a day and not realized I was missing. But being alone can also lead to loneliness. I am a creature of habit; there are days I only eat broccoli and coffee and there are days I don’t speak to anyone aloud except the cat. There is a line between aloneness that is good for me, and loneliness, but I can’t find it–it moves, I think, with my emotions and physical sensations and even with my thoughts. It’s easy to cross over that line and only realize it some time later, when the loneliness begins to gnaw at me and I finally notice. Like many feelings, I suspect I feel it much earlier than I am aware of feeling it. I need connections to other people, because I am human. Being autistic, being an introvert doesn’t quell that need. Depression is where loneliness is so pervasive there is no longer a drive to seek out that contact, that connection.

I don’t know how I’m going to make friends in Atlanta, but I am beginning to recognize that it is not just something I would like, but something I will need.