(We’ve decided to occasionally blog about things we’re perseveratig on here. We’ve said this is a autistic-themed blog, and many autistic people – including us – tend to perseverate on topics that we find interesting. If this isn’t your cup of tea, feel free to skip these. ~the management)
One thing that’s interested us—well, Hess and me mostly—is the absence or presence of certain aspects of connected speech in native English-speakers. We’ve been perseverating on it for about a year.
There’s a technical name for the phenomenon (‘yod coalescence’), but that term for it rubs against me like sandpaper so I’ll call it liaison like the French word for a form of connected speech that occurs in spoken language (although in French, I gather the liaison is default, rather than something that may or may not occur in speakers). I also call it assimilation. It’s usually a plosive (‘spitting’ or ‘exploding’ letters like d, t, p, k, etc, but the only plosives affected by this are d and t) or sibilant (‘hissing’ letters like s, z) before a ‘y’ sound that this happens to. And the ‘y’ sound is generally in a common word (especially ‘you’); I don’t think proper names are affected by this.
For example, in a sentence like ‘Did you go to the station?’, a lot of people (a majority, I think) will insert a ‘j’ sound (unless they’re trying to place strong emphasis on something, or are speaking very slowly), so it sounds a bit more like ‘Didjoo go to the station?’ It happens when a d sound at the end of a word comes before a y sound. There are some people who don’t insert that sound, including me. (Nor do Richard, James, Noël or Darwin.) Hess, however, does, as do Em and Carmen. Our default voice does unless the speaker wants to insert some of their own pronunciation habits.
Another thing that people do is…inserting a ‘zh’ (as in ‘pleasure’ or ‘leisure’) or ‘sh’ sound when an ‘s’ or ‘z’ (sibilant) sound comes before a ‘y’ sound. Like, when people say things like ‘as you know’, it becomes ‘azhoo know’, with the ‘z’ sound turning into a ‘zh’. Or ‘I’ll miss you’ becomes ‘I’ll misshoo’. I don’t make these sounds. Hess does. Most of us don’t do this except for him and Em. Front voice has this tendency, although individuals can circumvent it. This is common, but not as common as people doing it with ‘d’ sounds.
It also occurs with ‘t’ sounds, so a phrase like ‘next year’ becomes ‘next cheer’. This is fairly common, although there are still quite a few people who don’t join up these sounds. I pronounce phrases like ‘next year’ without the blend, but there are a lot of people here who would use the ‘next cheer’ pronunciation.
I tend to see these speech patterns as having textures—speech with the extra ‘j’, ‘sh’ and ‘zh’ sounds is the ‘rough form’ and speech without it is the ‘smooth form’. I prefer the smooth form sonically, and Hess prefers the rough form. Hess has different names for the phenomena, but these are mine. Hess, Yavari and Liz noticed the different styles when we were very young, and they collectively prefer the rough forms, which they saw as the more ‘typical’ ones.
People who don’t liaise ‘d’ and ‘y’ sounds are highly unlikely to assimilate sibilants and ‘y’ sounds. It’s an anecdotal correlation I noticed. I’ve heard some exceptions, but they’re in a minority. It doesn’t work the other way about; there are loads of people who won’t do it with sibilants, but with d’s and t’s. Of course, this is all anecdotal data; I’d have to conduct an actual study, but this is arcane enough that there’s really not much practical interest in it.
The distinctions are still there in song. Sometimes singing will flatten out some variances, but you can still hear the ‘rough form’ in some people’s singing voices. For instance, Imogen Heap has the ‘rough form’ and it’s quite apparent.
There are a few patterns we’ve seen that are related to regional or cultural accents. People from the Southern United States strongly tend towards the rough form as opposed to the smooth form. I have heard the smooth form from people from this region, but it’s less common. People who speak African American Vernacular English will nearly always assimilate at all points unless the final ‘d’ is dropped in a word. In conservative Received Pronunciation (the archetypical ‘posh’/'Oxbridge’ Southern English accent), you rarely hear the rough forms, except perhaps with ‘D’ sounds. (In Conservative RP, it actually goes a bit further, as you’ll hear people not assimilating even within words! Like people who pronounce issue as ‘issyoo’ as opposed to ‘ishoo’, or education as ‘ed-you-cation’ as opposed to ‘edge-you-cation’.)
Non-native speakers of English tend not to have these linking sounds, unless they’re Dutch, for some reason.
(Sorry we’ve been scarce on this blog lately; there’s been a lot going on in our offline life that’s prevented us really having the spoons to update any blogs, whether that refers to this one, our Tumblr, or our locked Dreamwidth blogs.)
Anyway, I’ve been thinking about social interactions with people, both on and off the spectrum, and how we, as a system, process these interactions. For the purposes of this post, I’ll just say ‘non-autistic’ to refer to people not on the spectrum, rather than ‘neurotypical’, since there are people who aren’t autistic, but don’t consider themselves neurotypical (eg, people with ADD, bipolar, OCD, etc).
While we definitely do have non-autistic friends that we really enjoy being around, it’s still harder to interact with them in person than it is with autistic people. It doesn’t matter how close they are to us, or how much we trust them. They feel a bit ‘opaque’, even if they’re clearly interested in spending time with us and enjoy our company. You’re never quite sure what they’re thinking. We’re better at picking up basic emotions in people (usually, telling the difference between a negative emotion and a positive one) than we used to be when we were younger, but there’s still this veil that’s up that we find hard to see past, no matter how much we learn social skills. It’s still a matter of intellectually realising what people want, rather than moving based on intuition.
Autistic people, wherever they fall on the spectrum, are much easier for us to read intuitively, and it’s easier to pick up that they’re upset. It’s not just an intellectual interpretation of their emotions, unlike what occurs with most people who aren’t somewhere on the spectrum. I’m not saying we can understand ALL autistic people’s emotions immediately or with accuracy, just that it’s easier by far. They’re also easier for us to open up to; they’re more likely to get more candour earlier in the relationship than others. When befriending non-autistic people, it generally takes us longer to come to trust and feel comfortable with them.
I think that the social-skills deficit that autistic people have is basically a difficulty interacting with people not on the spectrum, while interacting with autistic people involves more intuition, since they have more expected patterns of social behaviour (for them, anyway).
Online, it feels as if that’s levelled a bit, and it’s easier to read people off the spectrum, with the same level of readability applying to people on it. We have misinterpreted some things that other people on the spectrum said online, and it’s actually more likely for us to misread autistics online than it is in person – the likelihood matches what would happen with members of the general public – because a lot of the social distinctions that are more apparent offline aren’t as much online. There is an area where such things are a bit less level, though: we’re still likely to be more candid with other autistic people than we are people who aren’t.
Like many other people on the autistic spectrum, we perseverate, or focus intensely on a particular topic or set of topics. This can manifest in several ways: reading several articles about the topic of interest, listening to talks and reading articles by someone (if the area of interest is a public figure) constantly, listening to a song constantly (in fact, our iTunes is set to loop a single track by default), or drawing something over and over again.
Sometimes we have guilt over perseveration, since we would get snapped at if we talked about them too much growing up. Over the past eight years, we’ve tried to become more comfortable with the idea of being perseverative autistics, but it’s not been easy, since old habits—and old messages—die hard. We’ve noticed that people who weren’t exposed to constant interventions are often more comfortable going on and on about their interest sets in a way that we aren’t, particularly. Even if we’re alone and trying to enjoy a perseverative interest, there’s a big wave of guilt, as though people are going to osmotically work out that we’re perseverating and Being Weird™ and need to Stop It Right Now. Yes, that’s irrational, I know, but it’s still an issue.
Individuals within the system can have perseverations separate from ones that the whole system can have at once, or have zero interest in whatever someone else is stuck on at the moment. For instance, Hess and I both have a particular focus on some aspects of connected speech in spoken English, but James, Darwin and Richard aren’t interested and won’t join the conversation if Hess and I talk about it. Conversely, James and I were stuck on typography—well, are, since it’s a constant interest that rarely abates, and we’ll go on about it—and Darwin and Noël didn’t participate in those conversations. Some of us tend to be more taken by perseverations than others, too; Hess, Yavari and I perseverate more intensely and repetitively than Richard or Noël do.
We often discuss our perseverations amongst each other, rather than monologuing to outside people about it. That’s not to say that we never monologue about a special interest, but it has to be within the context of a pre-existing conversation. It’s one of the reasons why our plurality is something that we consider beneficial, as it allows us to have a safe space to hold conversations that might bore other people to tears. We do have some friends outside the system with similar perseverations—albeit with some different nuances—but apart from those people, we try and not drive people bonkers with the Special Interests Du Jour, especially if they’re obscure or really only of interest to us and similarly focussed people. Before we realised we were plural, we used to talk about these interests to people around us, particularly family members and friends, and they just got really tired of it quickly. I mean, we felt really bad about it, but there wasn’t any way to express it to anyone who was actually interested, and our system didn’t really have communication until our late teens (before that, we acted differently to one another, but we didn’t communicate as such).
This is one of the reasons why James believes that our plurality—well, in the form it presents now, even though there’s always been variability in our behaviour—arose as a means of dealing with being autistic and isolated (as well as other stresses and traumas), but I don’t know if I fully agree with him. It’s a hypothesis, though, and we’re allowed to disagree.
So, we’ve got a paper due this week. The introduction’s in place, but the rest of it isn’t.
I don’t think we’re quite at the point where we need an extension, but we’ve had a harder time writing stuff that isn’t just personal reflection or writing about our own lives. It’s not necessarily an ‘expression’ problem right now, as talking to people and writing journal entries is going just fine. But writing papers? It’s a lot harder right now. It’s one of those periods when it’s easier to identify what’s going on within, but it’s harder to describe things that are outside us, and consist of lots of labels and terminology and ‘widgets’ and loads of things that are just layers and layers that obscure the people and events underneath them. That kind of thinking isn’t very easy right now. There are times when it’s not so hard to think about these things, these terms and labels and abstract concepts that are so far divorced from the concrete realities that people actually live, but right now, it’s very hard.
And then that leads me to the silly stereotype that people who sometimes have problems with this sort of thinking are ‘less intelligent’ or ‘less thoughtful’. That’s not really the truth as there are different sorts of ‘intelligence’ and there are times when someone can understand these concepts, just not with the sort of expected language that people expect you to use flawlessly. (Hello Social Theory.) I often feel as though there are bits and gaps missing when working with such language, as it’s easy to understand the underlying concepts, but making some of the words join up with the ideas they’re trying to express doesn’t always work, and it’s embarrassing when you’re trying to explain your opinion on something and the language doesn’t sync up properly. It’s got us in a bit of trouble on an exam once, even though we understood what was being talked about, but a lot of times, the words were not there even though the ideas were.
These are the times when I wish I could just telepathically transmit my intent and have it automatically translated into words instead of muddling about trying to tease things out and getting a bit scrambled.
There’s never been a period where we didn’t know specifically what our neurotype was. We were certainly aware of it at the age of four or five, at the very least, and we definitely referred to it by the time we were six. As we’ve written on our “about” page, we’ve had some form of autism-spectrum diagnosis since very early childhood, and we’ve always been aware of it, regardless of the name applied to it (PDD-NOS, Asperger’s, autism, etc).
Admittedly, there was a phase when we had doubted whether we were autistic or not, when we were in our late teens, but I think that was a combination of frustration with some of the infantilization we encountered from biological family members and teachers, and some of the noxious stereotypes we’d seen of autistic people. (In fact, when we did come across someone who we knew to be on the spectrum, we deliberately distanced ourselves from them, because we saw some of our younger behavior in them and found it embarrassing.) We hadn’t known too many people on the spectrum at that time, either, whether it was online or off. Another factor in our distancing ourselves may have been our exposure to early social interventions, so we had had some autism-specific social training that people who were diagnosed later on didn’t have. When we started joining Asperger’s/autism forums online, the majority of people we’d met had diagnoses in adulthood or were self-diagnosed. They may have been aware of their social differences, and may have had some things pointed out, but they probably didn’t have treatment that was specifically intended to modify the behavior of autistic people.
Because we were subject to early intervention, we had a lot of social-skills training, including roleplaying social situations, speech therapy (we didn’t have any specific speech impediments, but it was more a matter of what we were saying, rather than issues with pronunciation or grammar), worksheets about social interactions, observational learning, and other techniques designed to teach us how to communicate with non-autistic people without seeming so conspicuous. Also, one of our system members was incredibly interested in acting, which allowed us to pick up some other social scripts. We’ve also learned a lot of social interaction over the Internet, especially after our late teens. We can come across as eccentric, but it’s not as blatant as it has been in the past. Those of us who are working on our degree are specifically interested in studying people, too—which is why we’re social scientists.
In public, we generally “pass,” unless we’re under extreme stress. It takes some effort on our part, admittedly, but it’s very much programmed into us. Because we do “pass,” people will sometimes get exasperated with us when one of our limitations does come up—for instance, our struggles with self-care, or the occasional social gaffes, or our sensory issues, or being provoked into a meltdown. They’re not sure what happened, because we’ve absorbed the social scripts well enough that it’s not immediately obvious that we’re autistic. I often wonder whether people who were diagnosed later in life tend to “pass” less than people who were identified as autistic, or at the very least neurodivergent, in early childhood. This isn’t a defense of ABA or other forms of early intervention that devalue autistic existence as much as it is an academic question.
In my opinion, our ability to “pass” is both a good and bad thing. It makes it easier for us to move throughout the world without immediate judgement from NTs, but at the same time, it sometimes masks many of the actual difficulties we go through, regardless of our ability to superficially handle social situations in a way that could pass for non-autistic.
There’s this assumption that every single autistic adult has support from family members, or that every autistic person’s family members are willing to support their child after they reach a certain age.
Sometimes it’s merely frustrating. Right now, it’s actively angering me.
Not everyone has the luxury of having supportive parents, guys. Some people have abusive families. Some people have families who are just plain clueless.
There are some families who just don’t care about their child’s neurology, and think they can fend for themselves as everyone else does. They expect them to work at the same sorts of jobs (without any help), manage all the same things everyone else does, and don’t pay the slightest bit of attention to what they actually need. I think that this is primarily a problem with autistic people who are labelled ‘high-functioning’. I personally don’t believe in functioning labels, but I’m going by what people tend to perceive. There are LGBT/queer autistic people whose families refuse to accept their sexual orientation or gender identity, often using a particular religious stance as an excuse for their morally reprehensible bigotry. (In this case, homophobia and transphobia intersect with ableism/anti-autistic sentiment to create an even worse situation.)
These autistic people often end up in the foster care system as children, and in shelters (or without any support at all) as adults. While we weren’t in foster care, we definitely had spotty or nonexistent help in our early adult years, and struggled with things like housing and money. (It’s actually still pretty hard for us, even though it’s nothing like the way things were for us five or six years ago.) We’ve met other people, both online and off, who have had similar struggles.
We have absolutely zero family support. We were in a situation where we had to leave, and they were threatening to leave us to fucking rot because we couldn’t follow the ‘traditional’ path anyway. No empathy, no hearing our side of the story. No biological family member, in my opinion, actually understands our strengths or limitations. The worst ones subjected us to emotional abuse and bullying, while the others wouldn’t quite understand the gravity of what was going on, while they weren’t specifically malevolent or hurtful. Ignorance, though, is understandable, while being an unsympathetic douchefuck isn’t. And unfortunately, the primary caregivers in this case often fell into the second category. There are other people in similar situations: even if they do have contact with problematic family members, they certainly aren’t being supported by them, and have to create their own ad hoc families/social networks in order to get the help they need, and there are still often gaps.
A lot of them seemed to expect us to just be able to fend for ourselves without any help, just going through the traditional route, and we were shut down if any of us tried to argue that this wasn’t an appropriate path, or that our limitations would affect our performance at a certain task. They would use our being autistic to invalidate our experiences while pretending we were able to do things we actually couldn’t, ‘because that’s what people are supposed to do.’ We’ve had to look for help outside the traditional networks, and sometimes it’s tiresome. Sometimes it’s demoralising. There are gaps that we experience that other people don’t. It’s great that other people are able to get that support, but it would be nice if all of us were able to have it.
There just needs to be more recognition of people who may have different situations affecting the kind of support they receive in adulthood. It’s not always the model of an autistic person who stays home in order to get the support they need, especially if a particular family is abusive, or ill-equipped and simply not able to access any of the resources that many parents are assumed to be able to access. Any organisation purporting to help autistic people should include these situations as possibilities, and advocate for those of us who DON’T have some of the ‘expected’ avenues of support.
We’ve actually been pretty prolific on our main site over the past few months: Kerry, James and Darwin worked on the Who Are We? introduction to our collective; Em, Kerry and Hess collaborated on Rules of Engagement, a guide to interacting with plural systems for newbies; Kerry wrote Parallel Dreams, an article about commonalities between members of plural systems; Kerry wrote Are Plurals ‘Oppressed’?; and Darwin wrote Questioning ‘Types of Alters’, an article that questions pigeonholing all members of plural systems into stereotypical roles.
Some friends of ours were browsing eBay and found some listings by a mother who was selling some of her autistic daughter’s toys because “she doesn’t play with them.” Her justification was that she didn’t play with them typically, and simply wanted to “acquire” them. (I’m imagining that this person is unaware of some styles of autistic play, in which a child prefers to organize or arrange their toys, rather than imaginative or interactive play. While we did engage in imaginative play growing up, there were times when we arranged other items, like coins and books.) I know that had someone sold possessions of ours without our permission when we were younger, we would have noticed it and probably would have melted down, since something had been taken from us that provided us comfort.
While this mother’s actions by themselves are rather “micro,” the behavior this mother is exhibiting points to a larger-scale social dynamic that I’ve observed between autistic people and some of the NTs around them, particularly parents. There is this assumption that we, as autistic people, fundamentally lack agency, and that it’s appropriate for parents, caretakers, and other people to impose their own wills upon us, regardless of its actual adaptive benefit. In this case, selling this child’s toys because she doesn’t play with them “normally” isn’t justifiable. Her simply looking at them, collecting them, or arranging them isn’t inherently harmful. If she were hitting people with those toys, then yes, there would be a problem. There’s a difference between something being atypical and something being harmful, and the problem with a lot of autism parents is that they conflate the two. There also seems to be an unspoken assumption that our own desires are irrelevant, as though we’re empty husks, there to be filled with “normality.” There are so many attempts to steer autistic people away from being themselves, and it often seems as though these efforts are made to make the nonautistic parents or teachers more comfortable, rather than correcting something that’s directly harmful.
While I do understand the importance of social cues and unwritten rules, they should be taught to autistic people in a way that doesn’t marginalize their existence, and benign, private behavior shouldn’t be suppressed simply because it “looks bad.” It may be a example of deviance from a particular set of social norms (well, folkways, to be specific), but it’s not inherently bad. We are still agents, whether we’re neurologically variant or not. We deserve the right to exist as we are, even if we must learn how to cooperate with the world around us. Unfortunately, some people seem to think that “cooperating with the outside world” necessitates crushing our agency and preventing us from doing anything that looks remotely autistic. Sorry, that’s not teaching us cooperation; that’s just flat-out suppression. Stop destructive behavior*, yes—nobody needs to be hitting people—but don’t act as though we aren’t full people. Don’t sell off our belongings because we’re “using them the wrong way.”
All of us, whether autistic or not, require guidance as we grow and discover our places in the world. That being said, though, there’s no need to act as though we lack any sort of agency. Assuming that is adhering to some of the nastiest prejudices about autistic people, and is more counterproductive than it is helpful.
*and when I say “stop destructive behavior,” I don’t mean through using abusive aversive methods. Also, there is often a reason behind an autistic person’s meltdown – in many cases, it’s an intense reaction to being overloaded, frustrated, or having one’s space invaded.
I made a set of mini-banners for blogs and websites. This set has white backgrounds, but I can make transparent ones later. :3
(ETA: For some reason, ‘Fuck Autism Speaks’ doesn’t show up properly in the post, but if you click on it, it’s how it should be, and it should download fine once you’ve clicked on it.)
This is part of the “Autistic People Should” flash-blogging project, in which autistic bloggers pair the words “autistic people should” with positive messages, as opposed to the hateful, discriminatory ones that are so commonly associated with autistic people within this society. The project was spurred on by an autistic blogger’s (Alyssa of Yes, That Too) observation that the phrase “autistic people should” typed into Google autocomplete caused multiple hateful messages to appear. In order to combat these stereotypes, she’s organized a flash-blogging project to allow people to combat these destructive messages and replace them with something more uplifting to our community.
Autistic people should be treated with dignity and respect, rather than condescension, pity, and hatred.
Autistic people should be able to access services that recognize their basic humanity and make them part of the decision-making process, rather than robbing them of self-determination.
Autistic people should live authentically and positively, without the forces of prejudice and hatred controlling their lives.
Autistic people should have the right to be members of the broader community without ostracism for their variance.
Autistic people should be embraced for their existence, rather than experiencing absolute rejection and death threats.
Autistic people should have their emotions and reactions taken seriously.
Autistic people should be seen as people, rather than the subhuman monsters that we’re often portrayed as by prejudiced, closed-minded people.
People who know us well know that studying foreign languages is one of our favourite hobbies. We’ve studied, or attempted to study, about seven or eight languages (Spanish, French, German, Romanian, Japanese, Latin and briefly poking at Dutch, Italian, Russian, Portuguese and Swedish) within the past decade, and have read about several more.
Interestingly, languages that we’ve taught ourselves tend to be retained better than those which we’ve primarily studied in the classroom. A few years ago, we learned the equivalent of the first two semesters of Latin within the course of a few months. About eleven years ago, we were studying French pretty intensely and were able to do the equivalent of several typical academic years’ worth of study in the course of a few months. By contrast, it took us three years to reach the same level of skill in Spanish, which we took as our foreign language at high school. The same applies to German right now. We haven’t studied French intensely since 2003 (when we had a terrible French class at our first college, which is something we’d rather not talk about), and we can still read longer French passages with more fluency than we can German ones, even though we’ve studied German for a chronologically longer period of time. We’ve become rusty over the years, and we’re going over French again to get ourselves up to speed again. (Same applies to Spanish, actually, although our ‘rustiness’ in Spanish has a different quality to it than our rustiness in French. We’ve used Spanish more often over the years than we have French.)
One could argue that it was easier to learn French because we already had two semesters of Spanish, but we ultimately ended up knowing more French than we did Spanish after those months of intense study. Nor does it have anything to do with difficulty; we seem to have internalised Latin declensions better than we have German ones, even though the Latin case system has more actual cases than German has. I think that for us, self-directed learning allows us to use our own methods alone, rather than having to use methods that are less effective for us in order to receive a good grade. Also, perseverating on a particular language greatly accelerates our ability to learn it, since we’re sucked up into it. Interestingly, we tend to perseverate on subjects that we aren’t currently studying in class. That’s not to say that we necessarily lose focus on what we’re studying formally – although that would have been the case several years ago when we were in grade school – but there’s usually an intensity that comes out of perseverative learning that doesn’t exist otherwise, and we wonder if the collective nature of formal learning conflicts with some aspects of our need to completely consume certain subjects.
For better or worse, we are sensitive to certain visual aspects of our environment. Some of those experiences vary over time, but one constant has been typography. I think our sensitivity to it has led us to enjoy graphic design, but it’s also caused us more irritation than most other people see when we see type that we dislike. These days, the animus has been directed at certain system default fonts that people abuse, but it’s gone in other directions in the past. While many of us have personal interests in graphic design and typography, like Kerry and me, I think some of this is bodily; it’s been present before either of us has been here. When we were about four, there was this nightshirt of Egg Donor’s we couldn’t stand to look at because it had big red Franklin Gothic Condensed Bold text that seemed to move against the purple background of her shirt. We had to look away from signs that were set in Belwe and Revue. (Souvenir, Italia, and Windsor came close, but I don’t think anyone hated those as much as they did Belwe and Revue.) There was a book we bought a few years, Aesthetic Theory, that we couldn’t read because the text was set in dense, single-spaced Times Roman. (Ironic, much?) Times is hard for us to read at long length because it’s really cramped-looking. It’s fine in a newspaper or something, but not single-spaced in a book. We couldn’t stand to look at Romney signs or bumper stickers—not just because we hated him, but because the design on them is awful. That stupid “R.”
We’ve avoided using certain themes for this blog because the main text is in Arial, which we hate. (Luckily, the one we found uses Verdana for the main text, which we’re fine with.) The vast majority of us consider Arial, Times New Roman*, and Comic Sans (we call them the “unholy trinity of typefaces”) eyesores. (Times New Roman, when it’s bold, actually hurts our brain to look at if if it’s blown up.) If teachers try to make us use Times—mercifully, very few have, but there is always that one—we substitute Garamond Premier Pro, Hoefler Text, Lyon Text, or Minion, because otherwise it will bother us to look at our own writing. It won’t even feel like our own anymore, actually, now that I think of it. It bothers us to the point that we would rather lose one point for the “wrong font” than produce a document that we can’t even read without wanting to scroll down the font menu and choose something else. So we just use other serif fonts that we actually like using; most times, they don’t notice, or the penalty is minimal. Being able to have some control over the typography in our own work allows us to feel more comfortable, as though we’re “at home,” rather being in an uncomfortable, cramped motel where everything’s out of order and there are ugly factory paintings on the wall.
*I draw a distinction here between Times Roman and Times New Roman. There are slight differences between them, but I frequently call both “Times” when referring to the “idea of Times,” so to speak. Times Roman is slightly less objectionable than Times New Roman. Slightly. (And if it’s in a book, it’s usually Times Roman, not Times New Roman. TNR is…more Microsoft Word.)
This is not a very wordy weekend. At least not for written words outside a particular range of subjects. I think we’ve exhausted a lot of our social battery this week—classes have just resumed, and there have been a lot of people at our house lately—and that exhaustion sometimes comes with a drop in the ability to deal with writing that’s outside needing to communicate personal stuff or that’s outside our ‘special interest zone’. (For instance, Richard and I have half-finished a short paper for an elective class, and have slowly been going through the readings, but I was able to prattle on to a friend about Romance linguistic features and read lots of blogs and sections of foreign-language books.) It’s the autistic ‘attention tunnel’, and anything that’s outside that tunnel isn’t going to be noticed as much. If we’re going to produce words, they’d better be directed at something that’s in sight of the tunnel. It’s not selfishness or obstinance; it’s realising that this is the way our cognition is right now, and we’ll be able to focus on what we need to do when we’re able to. But right now, we need to process and be able to spend time inside our cosy ATTENTION TUNNEL OF LOVE AND WARMTH. And right now that means listening to songs on repeat, writing about ourselves and our own interests and only talking to the people in our house and our friends online (and having breaks from those conversations).
People have sometimes assumed that we seem to have an inexhaustible supply of words. That’s…really not true, at least not for us as a whole. Hess and Darwin struggle with writing long-form essays with frequency, even though they’re quite talkative in conversation before they run up against our collective burnout. James’ skills vary. (I think another reason why people think that we burn out verbally less than we actually do is that we compensate by switching. If someone wears out, someone else can come in and start talking so they can carry the conversation.) I tend to lose my verbal skills less quickly than some other people here do, and Richard is similar, but even we run out of juice sometimes, especially when we’ve hit a particular limit. Just because we’re good at writing, though, doesn’t mean that our ability to write is a ‘renewable resource’. Sometimes it runs out. Sometimes we’ll sit there for a week trying to work on a project that is inherently highly verbal, and the words just won’t come. The concept’s there, fully formed in its visual and conceptual glory, but translating it into words? It’s sometimes like swimming through treacle. Not exactly the easiest thing around, you know.
It’s wearying reading ~the literature~ on plurality. The way they describe system members gets to you after a while: Parts. Alters. Alternate personalities. Personas. Fragments. Anything but ‘people’. Anything other than the possibility that plural systems may very well be composed of several people, in the Cartesian ‘cogito, ergo sum’ sense.
I am not a ‘personality’. I am not an ‘ego state’. I certainly have a personality distinct from others’ in this system. But I am not ‘a personality’. Nobody is putting on a mask of me, only to casually discard it when they’re bored of it. Nobody retreats ‘into me’. I’m just…me. And in the same way, Hess is just Hess. Darwin’s just Darwin. James is just James. And so on. It’s frustrating to see this model, sanctioned by The Experts™, touted as the only one, even when it’s not your actual experience.
But they’re never going to listen to you because you’re ‘crazy’ anyway. That’s just your weird, fucked-up brain talking. How dare you actually assert your personhood and individual identity?
Maybe I’m sensitive because we’ve spent our entire earthly existence receiving messages that we are somehow ‘not really people’. Racism. Ableism. Homophobia. Transphobia. Classism. Misogyny before we transitioned. It messes about with your self-image, even when you know deep down that your existence is as valuable as anyone else’s is. And speaking up for who you are, regardless of what it is, is being uppity. It’s challenging something that people consider self-evident. I’m not, of course, conflating plurality with more obvious oppressive situations. I am, however, criticising the idea that if you belong to a ‘target’ identity, whatever you say is invalid, because your experiences aren’t being filtered through ‘experts’, who are invariably outside your community. It’s like those nonautistic ‘autism experts’. Rich and middle-class social workers who are out of touch with the people they work with. I’m not trying to bash allies, but there’s a difference between an ally who actually listens to you and an Expert™ that tries to impose their narrative on you.
I’m not even claiming that our plurality can be absolutely, 100% empirically proved. I am saying, though, that identity is complex and it’s silly to just dismiss stuff out of hand because it doesn’t match your experience or doesn’t fit into your ‘pathologise everything that doesn’t fit into our idealised norms’ mentality. (I’m going to add a disclaimer that I’m not claiming that DID/MPD don’t exist. I am, though, saying that they’re not the only ways in which plurality can exist.)
It’s frustrating, because these ‘experts’ don’t know our lived experience. They don’t listen to our lived experience. It’s just CURE PATHOLOGY CURE PATHOLOGY CURE PATHOLOGY over and over and over again, and the constant hammering on about how there is One True Good Brain.
And when you’ve got a ‘bad brain’, it’s hard to fight against it. You’re never sure if you’re going to be listened to. After all, your view is ‘less valid’ because you’ve got a ‘bad brain’, right?
Our plurality is part of what helps us to function. We don’t know whether we arose to assist in dealing with the world or not, but regardless of our origins, our separateness is beneficial. We are, however, more than simply a ‘coping mechanism’; we’re people. More importantly, the relationships we have with each other are important. To try and ‘integrate’ us, to act as though we’re all parts of the same mythical individual, to be eliminated for the sake of an imagined idea of normality, is to crush something that simply doesn’t deserve to be crushed.
I know I’ll never convince your run-of-the-mill troll posing as a ‘sceptic’ that atypical identities are valid, or the outsider Experts™, but this blog is not for those people.
- ‘I Was One of the Scary Kids‘ at Cracked Mirror in Shalott (content warning: abuse, violence, Newtown shootings)
- ‘Autism, Empathy and the “R-Word“‘, at Thirty Days of Autism
- ‘Change Only Comes to Government When You Participate‘, at TransGriot
- ‘My Son Is Not a Burden‘, by Jo Ashline
- ‘Hetero-Only Marriage Laws Were Not Created Out of Malice, But They’re Still Unfair Discrimination‘, at Family Scholars
- ‘Literally the Best Thing Ever: Hedy Lamarr‘, at Rookie
- ‘Possible Explanations Behind the Autistic Struggle to Understand Social Skills‘, by James Williams
[Content warning: abuse, trauma, war, natural disasters, other potentially upsetting or triggering material]
While we don’t consider this a ‘survivor blog’ in the classic sense, sometimes discussing trauma is relevant. I don’t mean in the sense that any of us would run through long, exhaustive lists of things we’ve gone through; we’re quite private about most of the specific traumatising events that cause us to have strong responses. But over the past few years, we’ve been grappling with internal questions about our relationship to trauma. (Some of this does have to do with system origins for some people, but none of us believes that the ‘host and alters’ paradigm applies to us.) There are things that we consider traumatising that other people wouldn’t, and there are things we’ve gone through that might be considered traumatising to anybody, but sometimes there are a lot of weird, not-quite-properly-pieced-together feelings about the entire thing.
One thing that many of us cope with is guilt for feeling traumatised in the first place. That we’re ‘weak’, or that we’re overreacting and our trauma wasn’t ‘real’ in the first place, because we were never in a war, and we were never in the direct centre of a natural disaster. This ties into our being autistic, because there’s a stereotype that some autistic people are less mature or resilient than non-autistic people, and are prone to overreacting. Obviously, this doesn’t apply to the ‘Spock’ autistic stereotype, but it does apply to the model of autism more frequently applied to women and girls. (I am not saying, of course, that all autistic people who have more intense emotional responses are women and girls; I’m referring to the stereotype.) Some of it is coping with the ‘badness’ that I mentioned before: overreaction is a sign that we’re ‘bad’. That we don’t know how to control ourselves. That we’re not remaining meek and humble in the face of things that we perceive as a threat. Even if that overreaction is internal and nobody even sees it except for people in-system.
I mean, there’s no doubting the traumatic reaction: the emotional flashbacks (I don’t endorse everything in this link, like the talk about inner-child therapy, but the description of an emotional flashback is spot-on), the repeated nightmares, the constant looping thoughts and memories of certain incidents or clusters of incidents. But when your experiences don’t leave physical scars, there’s always this doubt about whether it was ‘really’ traumatising. Even if those experiences took years for you to recover from. (Because, you know, your trauma’s not big enough to require that kind of recovery. You should just suck it up!) Even if you’re still thinking about it weeks, months, years, decades later.
Of course, it’s not people’s place to determine whether you’re ‘really’ traumatised or not. For some people, it takes natural disasters or seeing a war firsthand to produce triggers; for others, being emotionally abused at home or bullied at school can traumatise them. Just because something isn’t perceived as ‘big’ doesn’t mean that it can’t be traumatising. And I wish more people would realise that. That just because something may be disappointing or upsetting for some people can be triggering to someone else because of their own experiences. I’m not expecting people to know our triggers. But I know—we all know—that they exist, and affect our outlook. Sometimes, though, it’s difficult not to feel lost when you look for resources on coping with trauma, and they all assume that you’ve gone through something ‘big enough’, or they’re written in a way that doesn’t seem to deal with your neurology well enough.
I wish I could end this with some grand, sage advice, but I can’t. but I will say this: Your emotional reactions to an experience you consider traumatising are real, regardless of what happened to you. Some people react differently to different things, and far be it from me, or anyone else, to determine how you ‘should’ react to an event, as long as you aren’t out to hurt others.
Kerry and I were discussing—well, in this case, “discussing” consisted of nonverbal idea-sharing—the similarity between digital and physical spaces, and the psychological responses we have to them.
The most obvious analogies between digital and physical spaces can be drawn from websites, particularly ones where social interaction forms their foundation.
Websites with “real names” policies, or which encourage Being Real People™ online (which invariably excludes “fringe” people like plurals, pagans with craft names, and others) feel like the office: somewhere where you are not permitted to be your authentic self, and must put on a more circumspect persona to avoid being seen as too “odd.” For us, we would rather not spend our time on the Internet as though we are in the office. We have a few nonplural accounts, but we use them rarely, because we find the environment stifling in the same sense that a buttoned-down office would be. And since we are not being paid to spend time in these online spaces, as we would in the buttoned-down office, we avoid them. Using Facebook is as fun as having our teeth pulled for us, since it is not a space where we are habitually open. We do occasionally sign on for those people who prefer to communicate with it, but it is not home to us. We do not like using LinkedIn and other professional networking sites for similar reasons. For us, the Internet is where we are more open, and it is awkward using the “office” behaviours in a context that is not the physical office (or classroom).
This is not solely about the Internet, though: we feel the same way about computer applications and operating systems. They are spaces that we spend time in, and we feel that we must behave differently in them. We have been primary Mac and iOS users for the better part of the past three years, and feel uncomfortable when using Windows—and our brief glimpses at Android suggest that we would feel similarly with that platform, too—as though we are staying in a motel with sheets that are not ours and paintings that do not match what we would put up in our own house.
Even the applications we use to write, browse the Internet, do our artwork and design, and listen to music have these effects on us. Using TextEdit feels like lying in bed at home, while using Pages or Mellel feels like the classroom or office. Using Bean feels as though we are still at home, but sitting up at a desk. We do not feel comfortable writing academic papers or blog articles in TextEdit (it is too casual), and we do not feel right holding in-system chats in applications like Pages or Mellel—that is where we are supposed to sit down and be serious and work on directed writing projects, not hold casual conversations with one another.
I think this may be why we are sometimes sensitive to computer and mobile “platform wars,” even though we do not criticise others for their computing preferences. People are insulting our house, even though they do not see it that way, and we would never begrudge anyone their opinion on our preferred applications and platforms, whether they agreed with us or not. This, of course, does not mean that we are offended if someone says that they do not like Macs, iPhones, or iPads, but that we do feel as though people are insulting a place we consider comforting. I wonder if other people feel that way, too, which provokes the sensitive responses whenever an article promoting a different platform appears. If you spend any time reading technology blogs, there will invariably be an entry about Windows, OS X, Linux, the iPhone, the iPad, or the newest Android phones and tablets, and there will be commenters who will tout the merits of the other platform. These arguments often become heated and emotionally charged, even though people are ostensibly talking about mere ones and zeros, operating systems for phones and tablets.
We’ve been reading Got Parts?, which is a guide written for trauma-based DID/MPD systems to learn how to manage their lives while dealing with the fact that they are plural and must recover from trauma. It’s written by a DID system who’s credited as ‘ATW’, based on their own experiences as a DID system that needed to develop a better operating system in order to go through life in a healthier way. It uses language like ‘parts’ and ‘alters’, which we personally avoid in favour of ‘people’ and ‘system members’, but it’s written from the medical-model perspective, so this usage is fairly standard.
A heartening thing about the book is that ATW define ‘re-integration’ as co-operation between system members, rather than trying to combine everyone into a ‘single personality’, which is something I appreciate. While some trauma-based systems do benefit from integration in the ‘combine everybody’ sense, most systems don’t actually integrate, and setting up a mutualistic system is a more realistic goal to work towards. (I have expressed my personal opposition to ‘integration evangelism’ in the past, and won’t belabour the point here.)
This book is intensely practical, which is something I appreciate. It’s not focussed on the therapeutic process as much as it is working on basic life skills and system co-operation. The book begins with chapters on getting to know one another and establishing relationships with system members through visually mapping out the system; having system members write about themselves, their individual histories and their skills; how to present to therapists; and creating an environment of mutual respect. The author& also suggest that systems hold daily house meetings in order to discuss and delegate tasks; that they use planners to organise daily-life tasks; and that they find ways to co-operate to work towards the common goal of a fuller, more co-operative life, rather than constantly working at cross purposes. While our own system has developed better co-operation techniques over the years, some of the advice would still work quite well for us, such as holding more frequent meetings and using day planners to delegate tasks and organise our lives.
I have a few quibbles, but they’re relatively minor: in a preface written by the Sidran Institute, the authors write that ‘parts’ and ‘alters’ are manifestations of the same person, rather than being individual people themselves. Our views on personhood are based on self-perception and identity, so we don’t necessarily agree with this for our own system. There are systems that do see themselves as being facets of a central identity; however, none of us feels comfortable using that model for ourselves. Also, there’s a section about sexuality that describes BDSM as being unhealthy, which I disagree with — kink can be responsibly done, in my opinion.
(For the record: we ourselves aren’t fully sure of our origins. We have gone through trauma—primarily emotional and psychological abuse—but there’s no way to go back and pinpoint exactly what happened to make us plural. If we separated because we were traumatised, that doesn’t invalidate our identities, in my opinion; origins may explain how we go about some things, but origins are not destiny.)
[Content warning: Violence, death threats, internet douchebaggery]
I’ve talked about this before, and I’ll talk about it again.
Being a fucking jerk online does not constitute ‘social justice’.
Posting pictures of dead Pakistanis who were inadvertently hit during a drone strike in order to frighten people from voting for Obama is not social justice. It’s bullying. It’s using a shock image in order to anger people into voting for a third-party candidate—usually Stein, but I think some Johnson and Anderson supporters were involved too—who would never defeat Obama or Romney. I am not saying that the drone programme is right; in fact, I think it’s reprehensible and wish the US, UK and Pakistani governments would stop it. I am, however, saying that bullying people by posting gruesome images with no warnings in order to prevent people voting for Obama is a douchey thing to do. Especially when the only viable alternative was Romney, who showed no interest in dialling down warfare in the Middle East, and coupled his aggressive foreign policy with a regressive domestic policy that would have been much worse than anything that would happen under a second Obama administration.
Sending death threats and posting the home address of a woman (Laci Green) who said things she no longer agrees with on her popular YouTube series about sex education and health is not promoting social justice. It’s harassing someone whose words you find offensive. There are loads of people whose attitudes I find offensive, but I don’t use my blog to tell people to stalk conservative bloggers. I may disagree with these conservatives, and address their arguments, but I would never tell them to kill themselves because they wrote something I find awful. (If that were the case, I’d be telling a lot of people to kill themselves—but I’ve never done that.)
Telling people with whom you may have policy disagreements that they are terrible feminists and the worst people on the planet is not social justice. It’s being a fucking arsehole. Talking about how ‘cis scum’ should die isn’t social justice. It’s being a douche. I know facetious ‘shock’ language like ‘kill all the white men’ has been used in performance media like punk rock, as a friend of mine pointed out to me a while ago, but ‘die cis scum’ is used with seeming earnestness amongst the Tumblr/social-justice blogger lot. I can’t tell you how you should feel or respond, but I personally feel uncomfortable with addressing all instances of inadvertently transphobic comments with ‘die cis scum’. Yes, there are some people who are legitimately bigoted douchefucks, and yes, they should be called out (preferably not with death threats, but with arguments that address their noxious ideas), but there are a lot of people who are simply flat-out ignorant about transgender identity, and these people are qualitatively different to those who think that people shouldn’t have any recognition of a non-designated-at-birth gender. Ignorant people should be directed to good educational resources by those who have the energy and desire to do it.
I know it takes a lot of energy to deal with these misconceptions, and I don’t think anyone is obliged to deal with them directly, but there’s still a difference between ‘I don’t feel comfortable talking about this’ and directing an ignorant commenter to better resources and telling them they should fucking die. There are some really awful people out there, like Cathy ‘Bug’ Brennan, who have made a career out of invalidating and harassing trans people online, but I would still not make death threats or post their addresses; I would warn others about them and try and refute their arguments.
Death threats are not all right. Calling people names is not all right. Trying to make the world a more equitable place does not necessitate being a fucking bully.
I’m not even against calling people out for being racist, sexist, homophobic, transphobic or otherwise offensive. I am, however, tired of the semantic word games and bullying. All it does is serve to alienate people and make it harder to actually promote the equity we so desire.
And the sad thing is that people revel in this behaviour. As Flavia Dzodan says in her article for Tiger Beatdown, it’s a piece of performance art. Reality TV. People try and one-up each other as being More Devout, calling out more and more people, regardless of the severity of the incident, or whether they’ve recanted or not. Ariel Meadow Stallings, of the Offbeat Empire blog network, notes similar problems. Calling people out doesn’t have to always involve name-’em-and-shame-’em public performance, especially if the mistake happened because of sheer ignorance, or was already apologised for sincerely. Now, there is definitely a place for public callouts: rape apologists, politicians, pundits and columnists who unapologetically make awful remarks or pass discriminatory laws, sexual abusers and scam artists should be warned about in public, in order to protect people. For instance, Dan Savage, the Russian government, Todd Akin, Martin Ssempa, Richard Mourdock. But going after a sixteen-year-old who said something inadvertently on Tumblr with death threats or shock images is not the same thing. That’s not promoting justice. That’s being a bully. It’s creating a toxic environment where legitimate ‘teachable moments’ can’t happen. (And when you mention that this behaviour maaaay not be the best way to go about things, you’ll get shouted down about ‘tone arguments’. Sorry, noting that BULLYING is not how you promote justice is not a tone argument.)
I am so fucking sick of this. Of seeing a concept associated with making things better for as many people as possible turning into a carnival of theatrical hatred and bullying.
About a month ago, the conservative designer and blogger Andy Rutledge wrote an article called ‘Design’s Cult of Diversity‘, which was in response to an article written by Sarah Wachter-Boettcher, ‘Universal Design IRL‘, in A List Apart. I’ll gladly recommend Wachter-Boettcher’s insightful article, but Rutledge…eh. While I’ll give Rutledge credit for laying his argument out well—both visually and rhetorically—I do think that he’s completely wrong about diversity, affirmative action and the effects that stereotyping and prejudice have on the workplace, whether that refers to design or anything else.
In his article, Rutledge argues that making attempts to reach others based on their cultural background or gender is inherently racist and sexist, because it’s based on characteristics other than a person’s indiviual merits. He’s using the assumption that people are judged on merit, without any attention to race, gender, belief or other personal characteristic unrelated to someone’s skills. Unfortunately, that’s plainly not true. This is a conservative fantasy that prevents them taking responsibility for social inequities, whether it’s because they contribute to them (like Rick Santorum or Mitt Romney), or simply ignore them and stick their heads in the sand (David Cameron). If white men are consistently getting top jobs, it’s not because there are structural inequalities in place; it’s because they’re just better at the job! There couldn’t be any other explanation for why certain professions are demographically unbalanced. And conferences dominated by white men? Well, they’re the only ones who wanted to do it! Nevermind the reasons why women may turn you down. Things are a lot more complex, and I feel as though those gradations of experience aren’t being noted when people make claims like Rutledge is making.
The research doesn’t bear it out, nor do the experiences of women, people of colour and others who are not Andy Rutledge, a conservative white man who would not be disadvantaged by the faux-meritocracy he espouses. (Notice that it’s nearly always white people who make these claims?) As I’ve mentioned before in previous entries, stereotyping does lead to diminished performance, which ultimately handicaps people’s success in professional life. People who are subject to these stereotypes start from behind, and ignoring the fact that some people do, in fact, start from behind, is a recipe for simply continuing the status quo. People who live in a society that demeans their talent, intelligence and worth are not going to have the same advantages as those who grow up in a society that affirms their worth and ability, and people who shriek about affirmative action don’t get that.
I think that people are inherently equal, but they aren’t being treated equally, and it’s ridiculous to act as though they are, when there’s plenty of evidence that we don’t live in a postracial egalitarian utopia. Not when racist incidents are increasing in the United States, Britain and Greece. Not when Romney can go on about ‘binders full of women’ (which he lied about anyway). Not when people of colour—not all of them, but a disproportionate number in comparison to whites—are at falling-apart schools and are malnourished in their inner-city households. Conservatives who bray about the horrors of affirmative action and recognising the existence of structural inequality are ignoring scientific research and the lived experiences of everyday people. This isn’t just about Andy Rutledge and his conservative Republican talking points in his corner of the internet; it’s about the imbalances that those of us who experience cultural oppression experience every single day.
On a blog dedicated to criticism of libertarianism, there was an entry that briefly discussed (I know the URL is pretty fucking awful, and I wish the writer would change it) a particular libertarian commentator, Tyler Cowen, and his defences of autistic thinking. While I agree with the author that Cowen’s political beliefs are appalling, I don’t understand why Asperger Syndrome—or any other form of autism—needs to be linked with libertarianism or the lack of empathy expressed by right-libertarians, objectivists, minarchists and ‘voluntaryists*’ in particular.
Autistic people are capable of empathy. There are some of us who are unaware of others’ needs, but it’s generally not intentional, and we, as a group, don’t create political philosophies that centre on the glorification of greed and selfishness to the exclusion of basic human decency. I don’t even think that all libertarianism is this way, but the sort (right-libertarianism, Paulism and objectivism) I see constantly espoused on the internet feels this way to me. The anti-empathic, Social Darwinist, ‘LET THEM DIE’ socioeconomic policy is sociopathic, not autistic. Are there some jerks out there on the spectrum? Yes, but please don’t act as though our neurology makes us more likely to adhere to a worldview that categorically denies the importance of empathy and co-operation. There are autistic libertarians—we’ve known a few—but there are many libertarians who are not autistic, and have in fact displayed utter disdain for neurologically variant people (and anyone who isn’t a cis, straight white man in general, heh).
None of us here is a libertarian, and we don’t feel that our neurology justifies that political viewpoint. No one neurotype, in my opinion, is necessarily ‘predisposed’ to adhere to a particular set of political ideologies. For instance, people stereotype autistic people as being rigid and resistant to change, which might suggest that they would all be conservatives. There are a great number of autistic liberals, social democrats and progressives, including most of us! Just because we may not necessarily prefer abrupt changes in our environment or our routine doesn’t mean that society, as a whole, should not be changed. For us, anyway, our problems with sudden change—like realising that your day’s plans have been utterly thrown off—are micro-level frustrations, rather than macro-level policy preferences. If a form of social change means more equality and fairness for everyone involved, then we wholeheartedly welcome it. But seemingly arbitrary changes in our daily lives? Irritating.
*That word bites my brain. Shouldn’t it be ‘voluntarist’? There aren’t communityists.
Now, no-one’s actually saying this about this blog, but I suppose it’s the irrational bits of the lizard-brain talking.
I know our blog centres on structural inequalities a lot, but I…don’t want to make it seem as though our experiences have been Constant Suffering All The Time. That’s definitely not the case. Right now, we are actually doing quite well in many ways, but our previous experiences still shape the way that many of us conceptualise the world, and so they’re addressed in our posts. Nothing’s perfect, but I’d say we have it pretty well right now. But this is pretty recent, and even as recently as four years ago, we were much worse off. We have had opportunities that lots of other people haven’t had, and we are extremely grateful for those people that we’ve known that have been positive influences.
Just because we’ve accomplished things doesn’t mean that we’ve never failed (nobody’s never failed), or have forgotten just how long it’s taken for us to get to where we are today, and how much further we could go. And we know of too many people who have had similar problems, and we’d like to at least show that we can relate to what they’ve gone through by sharing our own experiences and opinions. (And we tend to have a lot of ‘latency’, anyway, where events will feel current in our head for a while after they’re over, which is both…good and bad, depending on what happened and how much it affected us.)
Some of that is also a disciplinary focus, since we’re social scientists, heh. Our goal is to expose, understand and ultimately end these inequalities. This is obviously more anecdotal than a large research paper where we’re collecting data on people’s behaviour, but at the same time, there is definitely a kinship there.
[Content warning: Verbal abuse and bullying]
This is admittedly a hard entry to write, but I think it needed to be written, since it’s been weighing down on me.
When we were growing up, there was this pervasive mindset that we were inherently bad. This isn’t because we usually set out to do anything malicious, but there was this narrative about our behaviour and the way we moved about the world that implied that we were. After all, we (mostly Hess) were packed off to detention when we had shouting, crying meltdowns because of bullying, sensory overload, or desperate attempts to communicate a desire, only to be brushed off. We were shouted out at home because we were acting out, and the response was always criticism, verbal abuse and punishment, not legitimate attempts to understand what was provoking our negative reactions.
People saw our behaviour and didn’t try to find out the reasons behind it, and didn’t make the slightest effort to try and see what we were trying to communicate when we didn’t have the words to step outside the meltdowns or other bothersome behaviour (bothersome to them, desperate attempts to communicate for us). We internalised it, because we didn’t have another framework to allow us to accept ourselves. We had read parenting magazines and books and noticed that parents were supposed to show more empathy, but we dismissed it, because we were told otherwise at home.
We didn’t have problems because people were hurting us or misunderstanding us. We had problems because we were bad. The flaws were in us, not in others. It’s almost as though they acted as though we chose to be autistic and have difficulty communicating things to them. Like we were trying to be obstinate on purpose.
In contrast to us were ‘good’ children, who were frequently chosen to do things that we weren’t. We were left behind, because we didn’t deserve such things, or we were too ‘different’ to truly fit in. While we were in ‘gifted’ programmes, we were often left to do things by ourselves, and we were excluded from a lot of programmes and events that other people were invited to. We felt as though we were tainted and inherently flawed in a way that others weren’t. We had the impression that teachers liked ‘smart’ people, but the ones they liked better were more compliant and did things in a more typically acceptable way, so we believed that our abilities themselves were illegitimate. We responded to this stereotype threat by not investing ourselves as much in our education as much as we should have when we were younger, because we would never be ‘good’. Top universities were not Where People Like Us™ Belonged. We would never be in any honour societies because we were Bad. Teachers would not praise us because we were tainted. Why try to get sky-high grades when you’re bad anyway?
Of course, we did have positive influences growing up, and there were people who saw beyond our ‘badness’ and encouraged us to do as well as we could. We are eternally grateful to those people, and we are incredibly fortunate to have those voices interrupt the stream of self-hatred brought on by unwarranted stereotyping. But for years—even as recently as last year—we’ve subconsciously sabotaged our own success because we ‘don’t deserve it’. Because we’re ‘bad’. It’s definitely not intentional; it’s a product of years of negative messages that we’ve received.
It didn’t help that our younger sibling was ‘good’ too.
When we feel desperation or frustration now, or when something disappointing happens to us, there is still that potent voice at the back of our head, telling us that we’re ‘bad’. We don’t listen to it as much as we used to, but that doesn’t mean it’s been expunged. There are still events that bring up the old messages, and this year was full of them. I won’t go into details in public, but for a few months, we felt as though we were eleven again. It seemed as though more ‘typical’ people were rewarded, and our efforts were invalidated. Fortunately, things did work out for us, but we still have triggers from the worst bits of this year, because they took us back to this space of ‘badness’.
I wish that it were easy for us to stop thinking of ourselves as ‘bad’. Some of us, like Noël and James, tend to struggle with it less than Hess or I do, but that baggage is still there. We’ve got over our resentment that we used to have of so-called ‘good’ kids years ago—we tend to resent situations, not people, these days—but we still worry, deep down, that we actually are ‘bad’.
I wonder how many neurologically variant people have similar relationships with ‘badness’.
Is it something I personally want to reclaim? There’s too much baggage in being ‘bad’, I think, and I don’t want to imply that I support things that are actually bad, like abuse or murder. I can’t speak for anyone else here, though.
I was reading about Carly Fleischmann, an autistic teenager who gained the ability to communicate with other people using her computer, and I noticed that much of the commentary on her father’s book was about “unlocking” autism. (Not to mention that that the book itself has a subtitle of “Breaking Through Autism.”)
This isn’t the only example of a narrative about an autistic person’s newfound (to their nonautistic families and caretakers) ability to communicate to them using comprehensible language, unfortunately; it seems to be a trope that exists among the autism community—by which I mean parents, therapists, and teachers, rather than the autistic community, in which the discourse is directed by autistic people themselves. Is it really a matter of “unlocking autism,” or is it a matter of finding a way in which people can communicate mutually, rather than a one-sided, neurotypical-focused, model that presumes that the autistic’s world is a sealed-off fortress?
When an American learns French, do we say that he’s “unlocking France”? When an Italian learns Vietnamese, do we say that she’s “unlocking Vietnam”? No, they’re learning a new way to communicate with a larger group of people, and it would be considered condescending and xenophobic to assume that learning a foreign language involves “unlocking” the secrets of an unconquered culture. “We have discovered this uncharted land! Let us fraternize with the natives!” Feels a bit White Man’s Burden, doesn’t it?
When I write, I’m not “unlocking autism,” nor do people talking with me or reading my writing “unlock autism.” I’m communicating, and I am actively insulted by the notion that my wanting to talk to people, regardless of their neurotype, is “unlocking” me. Existence isn’t a one-sided phenomenon, and I think that “autism parents,” caretakers, and teachers would benefit very much from a mutualistic perspective that recognizes the agency of autistic people themselves. Yes, some autistic people do have difficulty communicating in the way expected by nonautistic people, but that doesn’t mean that they need to be treated as though they are savages to be “civilized.” Try to understand what we’re trying to say, and I think most of us would return the favor. Don’t try to “unlock” me; try to find out what I’m trying to tell you, as a fellow human being. I may be autistic, and may communicate my thoughts differently from you, but that doesn’t mean that you have to act as though I am an inscrutable puzzle who exists to frustrate you. Communication is a mutual act. Trust me, even though I may get it wrong sometimes, that doesn’t mean that I don’t want to hear what you say. Please grant me the same respect. (And by the way, neither I nor my system-mates deserve extra brownie points because we speak. This applies to nonspeaking autistics, too.)
(I’d be interested in reading the book, by the way, despite the subtitle. I also apologize for the sprinkling of “dick quotes” throughout this article, but the “unlocking autism” trope bothers me enough to necessitate them for me.)
[The language used in this article is a bit messy, but I don't want to marginalise trans and genderqueer people, so I will try to draw distinctions between gender stereotypes, actual gender identity and the gender someone may have been brought up as.]
There’s a website that describes the differences between ‘male’ and ‘female’ Asperger Syndrome presentations. While I’m glad that it does recognise types of AS or autism that don’t seem like the stereotypical ‘computer brain autistic’, I’m not glad that it’s being handled as though it’s a set of binary gender stereotypes. My opposition to the gendered framing has a few origins: I’m opposed to genetic determinism used as an end-all be-all answer for differences that could either have biological origins, social origins or a combination thereof; gender itself is more complex than ‘men vs women’; and there’s a faint hint of evo-psych stereotyping that I’d rather avoid.
I have noticed some differences between some autistic people brought up as boys and those brought up as girls, but they aren’t universal, and there are often combinations of these traits that exist in all people, regardless of how they were brought up.
As a social scientist, I feel really uncomfortable with these pronouncements that autism’s presentation is related to gender as a supposedly ‘biological’ phenomenon, rather than a social one. Is it possible that autistic women, or others raised as girls, come across as being more socially adept because girls are taught to be more socially open, and that odd social behaviour is less apparent in people brought up as boys? Boys are expected to be better at maths and science than girls are, so couldn’t gender stereotyping influence how autistic people present themselves? Whether someone’s autistic or not, they’re quite likely to be affected by their society’s gender norms, whether consciously or not. It is true that some autistic people may not be aware of some social cues that nonautistic people notice, but that doesn’t mean that that cultural exposure doesn’t exist. The idea that women are inherently poorer at maths has been debunked, so why resurrect that risible idea as Science™?
I cited an article earlier this year about how autistics raised as boys were more likely to be successful within society in general in comparison to autistics brought up as girls. There’s another item on the author’s list, in which she mentions that autistic women and girls are more likely to pay less attention to grooming. This sounds more like a social expectation that people brought up as girls are likely to be subjected to. If you’re perceived as a boy and show up with sloppy hair, you’re more likely to get less social opprobrium than someone who’s perceived as a girl. Girls are supposed to be ‘sugar, spice and everything nice’, and if you deviate from that stereotype, you’re probably going to get some negative feedback about it, to put it mildly. The idea of autistic girls being more youthful and childish plays into more stereotypes about women and girls as well, in which they’re often infantilised and treated as if they’re much less mature than boys or men. Girls and their ‘pretty little heads’, and that sort of thing.
Again, it’s refreshing to see portrayals of the different ways in which autistic people can present themselves, but it’s definitely not refreshing to see someone frame it in the form of tired gender stereotypes.
It seems as though the same old cultural stereotypes about men and women are playing themselves out again, and we should be careful to avoid promoting the same outmoded hypotheses about gender in order to understand how autistic people move throughout society. As activists, we should agitate against such stereotypes to create a more equitable world for all of us, regardless of gender.
For about a year, there has been a spate of trolling targeted at trans/genderqueer people, plurals, otherkin and other communities on Tumblr. I noticed that a lot of the attackers were libertarians (or libertarian-leaning conservatives), judging by the profiles they’d filled out on Tumblr. For a while, I was befuddled by the correlation between libertarianism and rampant hatred for people whose minds didn’t have a one-to-one mapping with their bodies. It seemed quite contradictory to the idea that people are free to exist as they are, without others’ coercion. I’d seen that sort of bigotry before coming from libertarians, but it was isolated cases, rather than organised attempts to attack particular groups of people. I don’t think that this is a problem that exists amongst all libertarians; for instance, left-libertarians tend not to hold these sorts of views. I am, of course, against most forms of libertarianism as a philosophical principle and as a foundation of government, but I’m not out to tar all libertarians with the same brush. Most of the problems I’ve noticed are from right-libertarians, ‘voluntaryists‘ and objectivists.
I suspect that some of these people draw their hostility towards these groups because of a particular set of philosophical tenets—that is, Randian objectivism—that discounts the importance of subjective perception.
There also tends to be a lot of black-and-white thinking that comes along with it. I was reading an entry on John Scalzi’s blog, where he criticises objectivism and Atlas Shrugged, and one of the commenters, Bruce Baugh, gave an anecdote of objectivists disbelieving in ring species because they represented an intermediate between one species and the next. For an objectivist, ‘species’ would be a binary, immutable category, with no in-between states. (He also mentioned a particular disdain for quantum mechanics.) If Baugh’s anecdote is true, this exemplifies some of the thinking I’ve seen amongst objectivists. Ambiguity doesn’t exist! Apparently. Even though it does. Things are what they are, with no variation between them. This accounts for their utter rejection of transgender identities, for instance. You’re born with what you have, and you cannot transcend or question it. It also accounts for their inability to understand plurality. Personhood is defined by the body, and regardless of how your perception may work, you cannot truly be plural. Of course, I think that’s utter tripe, and the psychological community itself is moving away from these simplistic ways of thinking. But that’s what objectivists believe, and that’s where the nastiness is coming from.
This explains why Thomas Szasz claimed that trans people were delusional, even though he disbelieved in mental illness, and was a libertarian. This also explains why the Tumblr trolls were essentially doing the same thing. With that sort of worldview, we’re all black boxes. Nothing subjective can truly exist, and if someone does mention that they have an identity that has strong subjective roots, they are immediately shot down and told that their self-perception is absolutely wrong, and that they should ‘stop pretending’.
The thing is, though, no-one is claiming that subjective identities can be empirically proved in the same way that gravity can. But we, as a society, do recognise that subjective phenomena can be quite influential, for better or for worse. Emotions are deeply subjective, but they certainly have a factor in how we conduct ourselves and how our societies develop. A plural system who perceives themselves as being several individual consciousnesses generated by the same brain isn’t the same thing as, say, a creation ‘scientist’. Creationists are categorically denying scientific fact, and their fairy tales should be kept out of science classrooms. If someone were to claim that they were literally a cabbage, then you might have a problem, but there’s a massive distinction between ‘I perceive myself in a particular way subjectively’ and ‘I am a cabbage.’ Objectivists fallaciously conflate ‘this is my self-perception’ with ‘I AM REALLY A CABBAGE DON’T YOU KNOW.’ I’m not against empiricism. But I am against false appeals to ‘science’ to deny people their identity and their voice.
You know, even Richard Dawkins, the reductionist’s reductionist, doesn’t go this far. In a TED talk he gave in 2005, about ‘our queer universe’, Dawkins discusses how our perception of the world is just a model of it, and that our senses create a version of the world that’s quite different to how other animals see it. I don’t always agree with Dawkins, but in this case, I think he makes quite a bit of sense.
I am an atheist. I am a materialist. But I am not an objectivist. My beliefs in empiricism and my disbelief in spiritual phenomena do not preclude my acceptance of subjective phenomena as being valid.
Objectivism ignores the complexity of human thought, and reduces it to a set of facilely constructed axioms. Reality is messy, complex and can’t be cut down into twee slogans for disaffected nerds. Can it be quantified? Yes, for the most part. But that doesn’t mean it’s not complex, or that variance doesn’t exist.
There’s this idea that autism is a “White condition,” even though it affects people of all ethnicities. It’s certainly prevalent in the US. Can’t speak for other countries, though; would anyone care to share if they are somewhere else and see similar portrayals? An article in Disability Studies Quarterly, “Autism, Rhetoric, and Whiteness,” discusses the White-centered image of autism that exists in the United States. When you think of autistic people in popular media, who do you think of? White folks, probably. If they’re so-called “high-functioning,” you think of Silicon Valley geeks, like software engineers and computer programmers. If they’re “low-functioning,” they’re the children (and I do mean “children,” since adults are frequently made invisible in this kind of rhetoric) of doting White, upper-middle-class parents.
Autistic people of color are incredibly invisible in this narrative. Some of this is because of stereotyping, and some of it is because of the sharp differences between the ability of middle- and upper-class White people to get diagnoses in comparison to Black and Latino folks. If you’re a comfortably off family in Silicon Valley, Boston, or Portland, you’re more able to afford the kind of schooling and medical care that would allow you or your child to get a diagnosis. But if you’re in a more impoverished area and can’t afford good schools or healthcare, you’re probably NOT going to get an autism diagnosis, and might get slapped with a different label that’s more stereotypically associated with people of your social status. Or they might just say you’re a “troublemaker.” We were fortunate enough to get a diagnosis early on, but we still had to deal with people who were incredibly unsympathetic, and acted as though we chose to be the way we were, rather than trying to understand our motivations and reactions to our environment and the people in it. Had we been White, I think things would have been easier, and people would have been more likely to understand that our behavior was something that deserved compassion and accommodation, not punishment and ostracism.
Sometimes we feel super-invisible, even in the neurodiversity movement, which calls a lot of anti-autistic stereotypes into question. I feel that there’s a lot of socioeconomic diversity, but not so much ethnic diversity. Kerry’s talked about this already a few months ago, actually. I agree with them in that there’s a real paucity of PoC voices in the autistic blogosphere, but I think that there is a lot more socioeconomic diversity than they imply.
It’s so fucking lonely.
To be fair, I doubt it’s all about race, and I think class is also a factor. (But then again, there’s a huge relationship between race and class in America, with Blacks and Latinos getting the short end of the stick.) Poorer people are probably less likely to receive an autism diagnosis than are middle-class and richer people, because they’re often stuck in shitty, underfunded schools, they can’t afford the kinds of evaluations that people with more money can get, and they often get misdiagnosed when they DO get hold of professionals.
I am a conservative in a very literal sense: there are things about society that should indeed be conserved, and there is much to be said about a measured approach to politics, rather than discarding everything for the sake of novelty. I believe strongly in family values, but do not believe they should be restricted to one type of family. I think that cultural preservation is of the utmost importance. Of course, engaging in racist, xenophobic, misogynistic or homophobic hatred would be rank hypocrisy from me, considering the company I share in our system, and our own experiences.
However, I started to distance myself from the label, because of the extremism that masquerades under the moniker of ‘conservatism’. Loathing hurled at asylum-seekers. Attempts at aggressive privatization of the British Welfare State, in a neo-Thatcherite mould. Republican tripe about President Obama’s birth certificate. Repeat all of these, ad nauseam.
I’ve aligned myself with the Tories in the past, and while I continue to agree with many of its tenets, I am uncomfortable with their obsession with austerity as a solution to Britain’s current recession. I had expected more of David Cameron before his becoming Prime Minister two years ago, and I’m disappointed with his actions. I had hoped for an improvement over the disastrous Gordon Brown, and I feel that while he’s far less extreme than his Republican counterparts in the United States, he’s far too influenced by them. Scaling back on excess spending doesn’t require doing it on the backs of the less fortunate. In the United States, I have no such identification with conservatism, though. Republicanism is utterly nasty, and I have little patience for it. Before the election of Barack Obama, I was able to read Republicans’ blogs without my teeth being set on edge; afterwards, their small-mindedness was laid bare, and I have no desire to encourage such behaviour, even though page views. This isn’t to say, of course, that it’s Obama’s fault, but that many Republicans saw fit to foment racial hatred and use it as a strategy to oppose the President’s policies. One can disagree with him without resorting to covert—or overt, in the case of many talk-radio and Fox News ideologues—racial attacks. For my part, I supported Obama over either of his Republican rivals, but I had far more respect for John McCain than I did the odious Mitt Romney.
I would like to see conservative parties like the Tories and Republicans sincerely evaluate the meaning of ‘conservatism’, and put witless extremism to rest.
Conservatism isn’t puerile ranting about asylum-seekers, birth certificates, Muslims and gays. It’s extremism, and should be repudiated wherever it appears.
I normally like the entries on RationalWiki, especially the ones about conservative ideologues and anti-science cranks. However, their article about ‘mental illness denial‘ gave me pause, because they implied that the ‘difference model’ of mental variance was in direct opposition to treatment.
As a neurodiversity advocate, I don’t think that’s the case.
I’m not against psychiatry, nor is anyone else here. We may advocate for neurodiversity, but that doesn’t come with automatic opposition to the mental health system in and of itself. If a condition is causing someone distress, then they should seek help for it, whether it be through talk therapy, medication or genuinely supportive, non-abusive inpatient treatment. There are some other plural activists, like the Astraea system, who do promote anti-psychiatry more actively; we’re not among that lot, and think that psychiatry can be used effectively, as long as there’s respect for the patient. It shouldn’t be used to enforce arbitrary ideas of whose identities are and are not valid, like what was done to gay people before homosexuality was removed from the DSM. You can criticise some aspects of psychiatry without advocating for people like Thomas Szasz and the ‘Church’ of Scientology.
The problem with much of modern psychiatry isn’t its existence, as much as it is the abuses that exist within it, and the deficit model being applied universally, whether a condition causes individual suffering or not. We don’t suffer from being plural, so why do we need treatment for it? We don’t inherently suffer from being autistic, so why should we have it ‘cured’? We’d like accommodations, but that’s quite different to being cured. We would like our anxiety and depression to be got rid of, since they have direct negative impacts on our success. But our existing in and of itself? Something quite different, I’d say.
If a condition does have a detrimental effect on your life (and not just because you’re not ‘omg, NORMAL™’) and you’d like help with it, you should be able to get that. If someone is out there harming people, then yes, that person should be stopped. The idea behind neurodiversity, though, is that simple existence isn’t harmful in and of itself. Non-abusive psychiatry and neurodiversity can coexist without denying that there are conditions that cause people suffering, or claiming that any neurological variation is inherently pathological.
Let me put a big disclaimer on this now: These are my personal views and they are not representative of our system as a whole. If you disagree with me, it doesn’t have shit to do with anyone else here. Also, here’s a content warning for warfare.
A lot of us, including me, hang out on political blogs. Most of them tend to range from moderate to far-left, which is reflective of our individual political beliefs.
What I’ve noticed is this disturbing tendency to reflexively label President Obama as “evil,” and lambaste him constantly because of some of his foreign-policy stances, and opposing him at every turn. Any time a pro-Obama post appears, they show up in droves, complaining about Afghanistan, drones, or Yemen, and endorsing Jill Stein, Ron Paul, or some other fringe candidate. These people are often called “puritopians” by more moderate Democrats and leftists: they want purity among left-wing voters and politicians, and they want their presidents to establish a utopian society. And they’ll sit down tearing Democratic Presidents, representatives, and senators apart. Most of these people are white. Most of them aren’t disabled. Most of them don’t stand to lose much if Republicans dominate all branches of government. (And even more oddly, some of them support Ron Paul, who’s notably racist and homophobic—but he’ll end the wars, you see!) Not to mention that the “help the poor kids in Pakistan” talk has a “pity porn” tone to it. It feels as though they’re using it as a pretext to criticize the Obama Administration without actually being attached to the issue.
They generally claim to be fighting for all of us, and want to make society a more equitable place. Yet they tried to convince Obama voters that he was “evil,” and that making it easier for Mitt to win by voting for Jill Stein, Gary Johnson, or other ostensibly anti-war candidates was a viable solution. Some of them have these scorched-earth fantasies, in which they wanted the Republicans to win so that they could prove that the system was fucked up. You realize how many people would get screwed if Romney won? Say goodbye to Roe v. Wade, LGBT rights, the social safety net, avoiding war in Iran…Sorry, this is not a motherfucking GAME where you can toss people under a fucking bus to make a cute little political point. Why not put pressure on Obama, rather than threatening with a swing-state vote (it’s less of a problem for folks in solid red or blue states) for Jill Stein or some other candidate who will never fucking become president and will just make it easier for a Republican to take office…and you KNOW Romney or Gingrich or whoever won’t fucking listen to you. I’m not saying “My President right or wrong.” I’m saying that it’s better to put pressure on a more receptive leader than it is to say “I’m taking my toys and going home, and fuck anyone who might be affected by a Republican winning the presidency.” I’m right there with you on wanting the Administration to cut this stuff out, but that doesn’t mean that I’d make it easier for MITT FUCKING ROMNEY to win.
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Most people who know us well know that we’re not overfond of the Republicans, especially in their current incarnation.
Mitt Romney’s platform is founded on the fallacious idea that anyone can pull themselves up by their bootstraps. That the needs of the wealthy take precedence over the needs of everyone else. He, Paul Ryan, and other prominent Republicans have made no efforts to hide their contempt for people who are “takers,” rather than “wealth creators” like them. The “taker” class includes people who earn too little to earn income tax, or cannot work at all. For Republican Social Darwinists, if you can’t work, you’re nothing. (And if you can only find menial work, you’re still nothing.) They don’t care whether you have health insurance or disability services. They’ll cut disability funding, because who needs people like us? We should all just starve and die, because we’re “wealth takers.”
To make matters simpler: Romney and the Republicans couldn’t care less whether people like us suffered because we don’t fit into the “right worker” mold. A vote for his ticket would be a vote for the social inequities that we have committed ourselves to agitating against. President Obama may not be perfect, but he has show far more concern for those of us who aren’t plutocratic millionaires, unlike Romney. Unlike the vast majority of the modern Republican Party.
Never mind that austerity doesn’t work. Never mind that it’s infuriating people to the point of violent protest in other countries where austerity measures have been implemented. Because rugged individualism will rule the day. If you don’t pull yourself up by your bootstraps, you are nothing.
A more poignant post about why the Republicans are horrible for disabled people is here; we reblogged it on Tumblr, and I (JR) find that it shows, quite viscerally, how awful the Republican Party is for anyone who isn’t white, able-bodied, cis male, and heterosexual.
We may be voting for Barack Obama this year, but we’re also pointedly voting against Mitt Romney, the Republican Party, and the toxic social and economic policies they stand for.
The problem that we’ve seen with anti-plural hostility is the dismissal of any identity that varies from a particular norm, without any explanation other than ‘I think it’s BS, so your experience can’t be valid.’ There just isn’t any serious discussion happening, because people believe that it’s outside the realm of seriousness. It doesn’t help that some environments, such as Tumblr, turn discussions of identity into a sideshow, rather than actually teasing out the important issues underneath some of the bluster that appears on people’s dashboards.
Asking questions about identity, though, is hard. It requires people to question their preconceived ideas about selfhood, personhood and what it means to be ‘mentally healthy’. Since Western culture doesn’t currently have a mainstream framework for mental variance that doesn’t use the medical model, and positivism prevails in most of the social sciences, including psychology, more philosophical explanations aren’t brought in as much as they were in the past. Neurodiversity is gaining more traction in popular discourse, but it will take a bit longer before that mindset displaces the current set of ideas.
There are people who will say ‘It’s crazy! Because it’s not “normal”, something’s wrong with you.’ That those of us who are non-DID plural systems can’t have valid experiences because one model of cognition tends to be rather hostile to the idea of variance being just that—variance. Some conditions do require treatment, but variance in and of itself shouldn’t be the reason why treatment should be mandated. Unfortunately, a lot of people conflate ‘variance’ and ‘disorder’. It’s thoughtless traditionalism for its own sake, as opposed to a thoughtful stance that considers all aspects of identity.
As usual, I’ll add the disclaimer that I don’t think that DID isn’t a thing, but that plurality itself need not always be explained with that paradigm. It’s a bit like gender variance—there are ‘classic’ trans people, who have binary gender identities and want to physically change their bodies to match their identities, and there are other gender-variant people, who may or may not identify themselves as being on the gender binary, and may or may not want to change their bodies.
On the other hand, we’ve seen people come round just by knowing others who have had different experiences to them, and are willing to listen to them (that’s the important bit), even if they may not be completely knowledgeable at first.
We don’t know conclusively how we came to be separate people: some of us think that we emerged naturally; others think that our plurality may have occurred as a response to stress. Regardless, though, we like who we are, and don’t want to lose our identities to gain the social acceptance of people who aren’t willing to listen in the first place.
…we’ve just been moving to the other side of the country! We’ll be writing here again soon enough.
There are two types of problematic parents we’ve noticed: those that infantilise their children, incapable of seeing that their children are people and can self-advocate, and those parents who are hellbent on ‘normalising’ their children with ‘tough love’, which in its most extreme cases manifests in psychological and emotional abuse that leaves lasting scars. For some particularly bad parents, physical abuse is used as well.
We don’t have personal experience with family members who only use infantilisation, but we are far, far too familiar with tough ‘love’. I put love in quotation marks, because the behaviour was tough, but I don’t think it was very loving. Trying to humiliate someone having a meltdown isn’t loving. Shaming someone for being overloaded or struggling with certain scenarios is not loving. Becoming more critical and snappish once a nonautistic sibling comes along is not loving. It is abusive, and it’s reflective of the harmful ideas surrounding the autistic spectrum.
Because of our experiences, most of this article will be focussed on the harmful behaviour on the part of ‘tough love’ parents.
Their feelings of parental protectiveness are overlaid with resentment about their having an ‘abnormal’ child, one who may never fulfil any of the goals that parents associate with success. My child will never get a degree from Harvard or Oxford. My child will never become a doctor, lawyer or nuclear physicist. My child will never learn anything at all. Never, never, never. They’re so focussed on the possibilities of those ‘nevers’ that they work assiduously to stamp out the autism that they fallaciously view as ‘separate’ from their child’s existence. They want that typical child they’d been hoping and dreaming for, not the neurologically variant child who happens to be right in front of them. They see the child as a burden, a symbol of their failure to have a child that meets society’s expectations of what the perfect child should be, and they dread having to potentially look after the child for longer than the absolutely must. Things would be easier with a typical child, and these parents’ actions never let the child forget it. There is this undercurrent of being unwanted, of being flawed, in the child’s perception of the parent’s actions.
In order for these parents to get a ‘return on investment’, they subject their children to behaviour-modification techniques. This can be handling conspicuously autistic behaviour with traditional discipline like corporal punishment, revocation of privileges and aversives, rather than trying to understand the child’s behaviour and finding adaptations and services that allow them to make more sense of the world and have fewer negative reactions to it.
There’s often a problem when these parents see a particular atypical behaviour, and only see the behaviour, not the intention or stimuli that might motivate it. For instance, a parent who only looks at their child’s behaviour may interpret a meltdown as a deliberate attempt to make trouble, rather than a response to sensory or emotional overload. A ‘tough love’ parent may attempt to correct this external behaviour with traditional discipline, rather than trying to correct the situation, since they’re uninterested in the child’s interiority. Achieving success for this kind of parent is indistinguishability from a child’s nonautistic peers. It’s a superficial response to a deeper problem.
The problem with this childrearing style is that they’re not focussed on who their children actually are. They’re fixated on an Ideal Child, someone who their real child will never be. (This behaviour also exists with homophobic and transphobic parents, who refuse to see their queer children for who they are, and try to force them into a heteronormative or gender-conforming model ‘for their own sake’.)
People may write volumes and volumes about how we lack ‘theory of mind’, but this lack of reciprocity can go both ways. When parents kill their children because of their autism, it’s absolutely nonsensical to claim the lack of empathy only exists on our end. Most of these dysfunctional parent-child relationships don’t end up in the child’s death, but they can result in psychological abuse that leaves lasting damage to the child’s emotional health. When you’re constantly second guessing your self-worth and your abilities, that’s not a healthy place to be in. When your feelings are invalidated and people aren’t even trying to work out what’s wrong behind the visible behaviours, you might end up in an emotional state you’d rather not have.
Trying to correct who someone is isn’t the right way to go about things. Someone’s being autistic isn’t a crime. While being autistic does present adaptive problems, the more humane response is to accommodate and to teach a child healthy coping mechanisms that are person-centred, rather than trying to force someone to contort themselves to fit into a box labelled ‘Indistinguishable From Peers’.
In our case, we cut contact with our immediate biological family. Their tough ‘love’ was more damaging than simply letting us exist as who we were, and I think it turned out for the worst. Learning how to navigate the world comfortably involved years of trying to undo what they had done, and it’s still continuing today, even though things are easier for us than they were even three or four years ago. For people on the spectrum, not having that family support means that they are being deprived of access to services and help that most people are fortunate enough to have. It’s meant we’ve had to scramble to find resources and support. We have been able to, but it took several years.
While I believe the vast majority of autism parents are well intentioned, sometimes things go wrong, and people erroneously conflate being nonautistic with being a more valuable member of society. Sometimes, when those stereotypes are internalised too much, and are combined with a parent’s own negative personality traits, that can result in behaviour that is ultimately destructive to the autistic child’s psyche–or worse, their very existence.
A lot of times, we feel like a minority within a minority within a minority. Always between boundaries, negotiating the intersections between neurological variance, gender identity, sexuality and race, and realising the impact that every single one of those differences has on our daily existence.
It’s been very hard to find voices like ours in the autistic blogosphere. I don’t think we’ve come across any heavily updated or trafficked blogs by autistic people of colour, save one or two, much less autistic PoC who are also on the plural spectrum, are queer or are trans. Correct me if I’m wrong, but I feel like there is a lot of uniformity within the ‘mainstream’ (if you can call it that) network of autism-advocacy blogs. Most bloggers are White and middle- to upper-middle-class, with some exceptions, mostly where economic status is concerned. It’s very hard to find people with experiences like ours. Even finding first-hand accounts on how, say, anti-Black racism and autism interact with one another is pretty difficult, and it makes us feel quite alone at times. Since autism’s prevalence isn’t linked to ethnicity—it occurs just as frequently for Blacks, Indigenous Australians, South Asians, Native Americans, East Asians and Mestizos (to name a few ethnic groups) as it does for Whites—one has to wonder why there’s so few of those voices being heard. We’ve found some amazing autistic narratives, but very few have the intersections of racial prejudice, particularly in education and employment.
And that’s just autistic narratives in general: with ‘success stories’, the voices are even more limited. Most autistic people who end up studying at—and working with—top universities or end up in high-status jobs are quite privileged in some ways. These people are overwhelmingly white and upper-middle-class. In our case, I suppose we would qualify as a Success Story™, but we hear very few voices like ours. Most autistic PoC fall through the cracks, to be unheard from, and to be denied the services they need in order to survive—we’re not even going to be talking about thriving, here.
Fortunately, it’s been easier to find other queer and trans autistic voices. However, most of those narratives fall under the ‘white and middle-class’ category that I mentioned above. It does make us feel less alone to find those stories, though, since sexual or gender variance can change how autism is expressed when growing up, or in adult life. Being autistic can modify how someone perceives their gender or sexuality, and being queer or trans can modify how they perceive themselves as an autistic person. Those complexities are certainly real, and they can be potent. Having those voices out there is something that’s tremendously heartening to us, even if they don’t share every single bit of our history.
As for other plural systems, there are a few that blog specifically about autistic and neurodiversity issues. There aren’t that many systems blogging about it openly, at least not in a dedicated way. I think that some of it is because of the stigma surrounding multiplicity/plurality, and some of the unfortunate stereotypes and misconceptions that get attached to it from detractors probably aren’t a strong inducement for people to be open about it and discuss it in blogs or other public formats. I mean, if you’re worried about people trolling you just for talking about your own subjective experience, it’s hard to go out there and talk about them with the intent of holding a serious dialogue.
…I suppose it would be easier to approach people about some of these issues were we not to write as individuals and not mention plurality; however, we find it difficult to maintain blogs using a nonplural persona. Most of these have fizzled out over the years. To us, that’s like acting, and it’s not a comfortable act, either. We identify as plural precisely because it’s more convenient and practical to identify the consistent and localised variances in our cognitive styles as being separate people, in a philosophical sense, and to pretend that that variance doesn’t exist simply doesn’t feel right in this context. This is a neurodiversity blog too, and experiencing consciousness this way does fall under that rubric, at least to me and the other writers of this blog.
I’m so tired of feeling alone. All of us here are, and I’m pretty sure there are others who probably feel the same.
A lot of teachers, educational staff and university admissions officers have this image of what an ‘ideal student’ should be. I think you all know the type? Perfect or near-perfect GPAs, dozens of volunteer hours, masses of honours classes, usually socially well-adjusted, strong relationships with faculty, seem to seem absolutely perfect on paper. They’re a solid bet; they probably don’t present a nasty surprise or a potential risk. Unfortunately, this model is harmful to those of us who don’t fit it well, or only sort of fit it, rather than gliding into the role effortlessly. I’d say that we only sort of fit it, here.
Objectively, there’s nothing wrong with these people. I’m not saying that. It’s that there is more than one way to be a good student.
There are loads of people who, despite their talents and interests, end up struggling with some aspects of the traditional schooling process. This happens quite often for people on the spectrum, since some of them may not have problems with the academic material presented to them, but may struggle with overload, social interaction or racking up all the extracurricular activities that universities think that students need to put down on their applications in order to make them seem like more viable admissions candidates. Colleges may love students who play the violin, volunteer at the local hospital, tutor underprivileged primary-school children and go on holiday to build houses in Mexico—but someone who is more subject to overload may not have those same extracurricular experiences. But at the same time, they might have the potential to add to a learning community.
Interestingly—but not surprisingly—autistics raised as boys are more likely to succeed under this paradigm than autistics raised as girls, according to this article. Women in this study fared much worse than men—none of the women profiled had university degrees at all, and the majority of them were extremely isolated. Since the Rutter and Howlin study cited in the New York Times article didn’t look at transgender people, I’d be interested to know how trans and gender-variant youth end up, compared to their cis counterparts. I also have some ‘anecdata’ to add to this: of all the spectrum people we’ve known, the ones who fared better academically were those with supportive parents who made sure that the education they were getting was best suited for their children. People with parents who were either completely clueless or were flat-out abusive didn’t fare as well.
People who would actually perform well get shut out by the gatekeepers because they may look less impressive on paper than they do in real life. (And the converse happens—you get some real ‘winners’ getting admitted to top universities because they’re adept at bullshitting—or get someone else to bullshit for them.) For instance, someone with a more ‘lopsided’ ability profile may be passed over by some admissions committees because they don’t fulfil a particular image. An example of that might be a student who is great at every subject other than one. This student may be particularly gifted at learning languages, studying within a particular branch of science, or interpreting a certain type of mathematical idea, but they may struggle in other disciplines. Since some educational systems, like those of the US and Scotland, value ‘well-roundedness’ over specialisation when gatekeeping, students who have such ability profiles may struggle to gain admission to more competitive undergraduate programmes. Their grade-point average is lower, not because they’re incompetent, but because they tend to have strengths centred in one area, rather than strengths that are spread out more thinly across the disciplines.
This tends to feed into the idea that students who might not fit this particular ideal are ‘inferior’, which…is not the case. It also upholds the structural problems that prevent people on the spectrum from gaining access to good education and employment—if the universities with more resources are all turning them down and they’re stuck going to the large local state university (in the United States) or ending up in a vocational track and not getting any academic tertiary education at all (UK, Germany), that will make it more difficult for them to find jobs that would support them and would be less overloading to them.
Unfortunately, this doesn’t stop after a student graduates: once they get to the workplace, unfortunately, bosses are going to pick the person with the degree from Harvard over the one from Southern Tennessee Farming University. Not because the person from Harvard is necessarily smarter than the person from STFU, but the degree is ‘proof’ that the person is capable of playing the game in order to win a place at Harvard (or has rich ‘legacy’ parents)—whereas you only need to have a pulse to get admitted to STFU. And a lot of bright, skilled people end up at STFU and its real-life equivalents—not because they’re not talented enough to be at Harvard or places like that, but because the gatekeepers screen them out because of that ‘image’. (Or worse, they end up at for-profit ‘career colleges’, like the University of Phoenix or ITT Tech, that prey on low-income students, women and people of colour.)
The problem is that people are being drowned out before they have the chance to show that they are, in fact, capable. Do I have a perfect solution for this yet? No, I don’t; however, I do recognise that it’s a problem, and I feel it needs to be mentioned.
Does this mean that I’m against ‘achievement’ or ‘excellence’ or any other words that educationists use as mantras? Of course not; what I’m trying to do is expand the idea of what ‘excelling’ means, and how people of different neurotypes can achieve without fitting into this model.
I have noticed disturbing similarities between nonautistic people who are hellbent on finding a cure for autism, and nonplurals who evangelise integration as the universal treatment for all plurality, whether it falls under the classic definition of MPD/DID or not.
Both of them, I feel, seem deeply uncomfortable with the idea of neurological variation being something other than a dangerous pathology. When defending their pro-cure stance, they will invariably cite “their brother who smears faeces” or “their dysfunctional cousin whose ‘personalities’ have destroyed her life.” It is always the most extreme cases, nearly calculated to elicit disgust in the general population, that these people use in order to invalidate the idea that all neurological variance should be eliminated.
Empowerment is never an option; it is always cure. Because being neurotypical is the only acceptable state. There are no exceptions. I could draw further comparisons, to the anti-LGBT religious fundamentalists who advocate reparative therapy for queer people. Only straight sexuality and cisgender identity are acceptable. No deviation is permitted. You must be assimilated. They, too, trot out the worst examples of LGBT people in order to invalidate the entire movement.
This makes me feel deeply uncomfortable as a member of a plural system on the autistic spectrum, whose individual behaviour appears autistic. It does not seem like a considered evaluation of neurological difference; it feels like a visceral reaction to the idea that someone does vary from them, and that there is a challenge to the way in which they perceive personhood. Since humans are considered social animals, the idea that there is a subset of humans that does not derive the same experience from social interaction, and has different reactions to other environmental stimuli, makes them incredibly uncomfortable. What, then, does it mean to be human, if there is this group of people that “are human in a different way”? Plurality, too, challenges their notions of what the self means—if many selves within one brain can exist, is it possible that I, too, could be many? That I may have to share my thoughts, that the notion of privacy or identity could be more complicated than what it initially was on the surface?
The singular obsession with cure and healing also reminds me far too much of the eugenicist policies favoured in the United States and in Western Europe in the early twentieth century. Psychiatrists and academics relished drawing up hierarchical diagnostic schemas and creating Great Chains of Being, and consigning anyone who was considered “substandard” to abusive, soul-destroying institutions. The rise of Autism Speaks (and its predecessor, Cure Autism Now) in the past decade is simply repeating the sordid history of the suppression of disabled communities, and words cannot describe how much I loathe Autism Speaks and organisations that are philosophically akin to it.
It feels deeply adversarial. Us against them, combat neurodiversity, combat difference.
Combat me, combat Kerry, combat Hess, combat the majority of our closest friends. Crush the lives and ambitions of real, living, breathing people, because there is something that they perceive is challenging. Threatening.
My goal is to encourage people to accept complexity in identity, and to realise that variance, in and of itself, is not to simply be eliminated.
To add on to Em’s post about ‘invisible effort’, there’s also its converse, the dreaded ‘imposter syndrome‘. That is, when you find out that you did get a particular opportunity, you wonder if you don’t deserve it, if you somehow ‘fooled’ HR, or if the people on the admissions committee just feel bad for you and want to help, rather than respecting your abilities. And before you find out, there’s often this worry and catastrophising: for instance, thinking you failed a statistics test when you ended up getting an A. (True story! I literally thought we’d get a test returned to us with an F. Turns out it was a 96.)
It’s irrational, but when you’re used to situations more like what Em described, you have a hard time believing that people do want to give you—and your work—a fair chance, as opposed to immediately zeroing in on the stereotyped ‘perfect employee/student’ with untarnished grades or work histories.
Imposter syndrome tends to affect people who belong to a community that isn’t historically associated with culturally recognised achievement: that is, people of colour (except South and East Asians, who deal with a different set of stereotypes as the ‘model minority’), women and people with disabilities. Before our transition, we dealt with the triple threat of racism, ableism and misogyny, which all contributed to our own ‘imposter syndrome’ issues. Nowadays, ableism and racism are still factors, and while we don’t deal with direct misogyny any more, the memories are still there, and its effects still exist. (DISCLAIMER: I’m not trying to claim that trans men are ‘men lite’, but that cis men and trans men’s upbringings may be different because of the added stereotyping.)
But if you’re Black, for example, and go to a school where you experience stereotype threat (that is, teachers have a lower expectation of you because they think Black students are less academically capable), you may start internalising it and thinking that you are a poor student, even though you have the ability to excel beyond what anyone has ever predicted for you. The same applies to women, particularly in science, technology, engineering and mathematics (STEM) careers; girls are frequently steered towards the humanities and social sciences, because as Barbie said, ‘maths is too hard’. Many women feel that they shouldn’t get involved in STEM careers, and a lot of women who are in STEM disciplines feel that they’re not as competent as men—not because they are less competent, but because of the stereotypes they’ve heard from Day One about how boys grow up to be engineers, physicists and computer programmers, while girls grow up to become schoolteachers and social workers. (There’s nothing wrong with being a schoolteacher or a social worker, of course, but society places a high premium on being a STEM employee.) People with disabilities are often marginalised too, especially those of us who had the misfortune of having spent time in special-education classes as children. If you’re in a classroom where the teacher is telling you (whether implicitly or explicitly) that your disability will make it so that you’ll never amount to anything, you’re probably not going to have the best self-image. You’ve already been considered the ‘dregs’ of education; why the hell would you want to proceed further?
This is where imposter syndrome comes from: the idea that particular groups are less capable than others, and you start internalising it and start questioning when things go right. (And when things go wrong, you feel that it’s ‘proof’ that you suck.)
Sorry we haven’t been blogging much; we’ve been incredibly busy with school-related stuff.
For a lot of autistic folks, their effort is “invisible”—that is, even though someone is trying their very hardest to do everything they possibly can, it still doesn’t look like enough.
And because it’s not physically visible, people may jump to the wrong conclusions at first. That we’re slacking off, that we don’t care, that we’re just “not putting in enough effort,” when that’s not the case—it’s more like, there’s a certain “module” in our head that’s failing, and it’s hard to keep everything else up, so things become harder and harder to make sure that everything looks as though it’s in its proper place. I’m not trying to make excuses, and I can understand where people’s disappointment comes from. But at the same time, it still sucks, because you feel guilty, and feel that you’ve let folks down.
People may see you coming in late for class (because it’s hard to get out of bed, much less trek the seven blocks or so to get to your bus stop just to find it pulling away from you, and the next one’s coming in 15 minutes), or turning in an assignment a few days late, and they may interpret it as your not being fully invested in what you’re doing. What they’re not seeing is the amount of effort you’re putting out for other tasks—for instance, day-to-day tasks may be harder for some people than academic work. It’s really hard for us to get the “spoons” together for cleaning, and we rarely cook these days, but we’ve been known to knock out nine- and ten-page papers within the course of about twelve hours (and that end up getting good grades). But people aren’t seeing the inertia that’s keeping you stuck in bed 30 minutes longer than you actually wanted to be; it just looks like “procrastination.”
This isn’t an excuse for unreliability; however, it’s placing certain things into perspective, so that people can find a situation that is more appropriate for their needs.
There are a few amazing articles that I think handle this issue well: Anonymous’ “And People Still Fail to Get It, Again and Again,” and Joel Smith’s “You Have It So Good.”
You might also get in an unhealthy habit of comparing yourself to nonautistic people who seem to effortlessly do things that you would never have the time or energy for. We struggled with this a lot at high school, for instance: there were these people who had perfect grades, were involved with a million extracurricular activities, and were able to hold down a job. Honors project here, tons of presentations there, 4.5 unweighted GPA, not a single C, D, or F, cozy with administration. For us, it never worked out that way: we could either study all the time, or we could do extracurricular activities, or we could work. We did have a bunch of extracurricular activities during the last two years of high school, but the price for that was burnout. Crashing in bed at odd times.
It usually leads to folks like that getting chosen for stuff (jobs, admissions at university), and our not being considered—not because we’re not intellectually capable of handling the work, but because there’s this stereotype that “good students” are supposed to expend inordinate amounts of time just to pad their freaking résumés, or that “good employees” need to have certain kinds of jobs with no gaps on their résumé (even during a recession!). Actually, that’s kind of snarky; I do think that most of these people are actually sincere about wanting to get involved with stuff. The playing field is levelled a bit if we’ve got a relationship with someone and they’re recommending us for something—then they’ve seen our work. We’ve gotten some awesome opportunities that way. We’ve seen proof of that over the past few weeks. (I don’t want to go into significant detail, because we prefer to keep our offline life and our blogging separate, but.) But if we don’t have folks vouching for us and we have to compete against Super Employee/Student™ with no blemishes on their record? We’re just not going to luck out, there.
And when you get turned down for that opportunity in favor of the person who seems to do everything “right,” you wonder what the hell is wrong with you, even if you’re not actually doing that badly, by most people’s standards. We tend to feel messy and broken when that happens, even though we know intellectually that we’re not “broken,” but that there are certain structures in place that make it harder for people in our situation to stand out among the people who seem to do everything right. You start feeling inferior even though your situation is just flat-out different, and your needs are different. But since nonautistic people are intrinsically “superior” to autistic people (note the dick quotes; I’m just talking about society’s fucked-up attitudes), if you end up getting the short end of the stick, it’s because YOU are flawed, wrong, and broken. But when you’re in the midst of that depression, you’re not seeing the structures; you’re seeing “oh god here we go again. I must SUCK. HR probably laughed at my cover letter!” You start feeling you’ll never measure up to people like that. It’s this constant feeling of starting from behind. It’s kind of obnoxious. It’s one of the reasons why job-hunting freaks us out unless we get it through someone we know. Yes, it’s easier for anyone to get a job through their friend or their old professor or their uncle or whoever. But for people who may not look as good on paper as the aforementioned Super Student™/Employee™, it’s even more vital.
And so you end up invisible again, even though you could do the work.