[Yavari] Sorry for our quiet.

 

We have wanted to post here more often, but we’re really overloaded at the moment, so it’s very hard for us to sit down and write entries for this blog in a directed kind of way. I guess we could try to have some more discipline about it, but it’s going to take us some time. Things are just getting really overwhelming and one of our classes is not very autistic-friendly. 

(Also pro tip, when we tell you we are autistic don’t say ‘well everyone’s somewhere on that spectrum’. No, they’re not. Sorry, not everyone deals with the shit we do and that kind of behaviour really annoys the fuck out of me.) 

[Kerry] Autistic Ability Stereotypes

There is just one stereotype about autistic people that will not die: the idea that we’re all geniuses at maths, technology and science. I think some of this comes from the stereotyped, sexist ideas that people like Simon Baron-Cohen and his followers spread in their writings about the ‘extreme male’, ‘systemising’ brain that focusses on factual, quantifiable information, rather than more subjective or interpersonal aspects of their environment. There may also be some influence from the diagnostic criteria of autism that characterise people on the spectrum as ‘lacking imagination’ and seeing things more concretely than abstractly, and the ‘hard’ sciences are thought to be rather objective, concrete and unambiguous. (Of course, that’s not true; science is full of unsolved mysteries that researchers seek to find out, and mathematicians can be some of the most imaginative people around, but stereotypes are ridiculous and annoyingly pervasive.) Noël discussed this about two years ago in his article ‘”Systemising”, Jacob Barnett and Autistic Stereotyping’. I feel as though this stereotype is far too generalised – is every single non-autistic person interested in arts and the humanities? I really don’t think so. 

Yes, there are lots of autistic people who are interested in maths and the ‘hard’ sciences. There are lots of people not on the spectrum who are too. Whenever you look at a large group of people and decide that they must all have identical interests, you’re not simply analysing their brain type; you’re drawing crude caricatures of them. This is no different from ‘Women are horrible at maths and sciences’ and ‘Men can’t empathise’ and ‘East Asians are all maths geniuses’. These categories of people are far too broad to attach a single group of interests to them, as though they’re all clones of the same person. Yes, some men struggle with empathy, but not all do. In fact, I would say most don’t struggle with it. Do some women struggle with maths? Of course, but many men do too. (Not to mention that a lot of women’s struggles with maths stem from stereotype threat and negative attitudes towards women doing ‘objective’ subjects at school, rather than women’s innate ‘inferiority’ at such tasks.) There are some East Asians who are brilliant at maths, but there are some who routinely fail their algebra exams. No one group can be characterised with such broad stereotypes. There are commonalities between autistic people, but assuming that they all have the same interests and aptitudes is grossly unfair and misleading. 

This stereotype can be incredibly damaging to those of us whose strengths lie in other domains. There are lots of autistic people who are stronger in language than they are in maths, and prefer art and literature to the sciences. People who don’t fit into the ‘maths/science/technology genius’ stereotype may be seen as ‘not being autistic enough’ because they can’t make fast calculations in their head, programme robots, conduct clever science experiments or memorise the periodic table. This might especially be hurtful to those of us who lean towards artistic and literary works, or people who choose to study the humanities rather than the sciences. There are people on the spectrum who would rather be poets, historians, journalists, novelists and painters, and those interests don’t make them any less autistic than those of us who want to become engineers, computer programmers, accountants, IT specialists or pure mathematicians. Even within our own community, some brains work differently. That’s just people in general, really. We’re not all alike.

In our system, there’s a tendency towards having people who tend to fall between the ‘humanities vs science’ divide, each approaching it in their own particular ways. There are some collective tendencies, though; our mathematical struggles affect everyone. It’s sort of obnoxious, actually. Maths is definitely not our strong point. There are many things that we understand conceptually, but it’s difficult for us to actually get things right if we’re sitting down to try and work out a particular problem. Quite a few of us are technophiles, but at the same time, we don’t know how to write software, and the majority of us (save Darwin) have little time to be poking around in the command line when a GUI does the job. And we straddle the boundaries anyway, as we’re pursuing a social science degree and have interests in combining scientific rigour with humanistic thought and analysis. It’s a lot more complicated and less hierarchical than people imagine it is. 

[Em] Man, I really hate functioning labels.

You know what I’m sick and tired of? Functioning labels, and people worshipping them as though they’re the end-all be-all of how autistic people actually interact with the world. 

We’re considered “high-functioning.” We’ve got a high tested IQ. We were expected to be able to engage in independent living after we graduated from high school. But then again, there are some tasks of daily living that we struggle with, and I wish we could get help with them. We can’t cook as often as we want to during the academic year. (It’s been easier for us over summer break, but then again, we don’t have homework.) But because we’re “high-functioning,” we can’t, at least not from official sources in our state. A lot of agencies and medical specialists define “functioning level” on IQ test scores, which are really questionable once you look at the matter more closely. 

Thing is, IQ scores don’t determine how you can deal with activities of daily living. They can’t! Just because you know how to arrange blocks in a certain way, answer a bunch of math problems, match vocabulary words up with their meanings, or choose the correct pattern on a multiple-choice test, doesn’t mean that you It just means that you can take a particular set of tests well. I don’t even think that it measures intelligence, and I’m tired of government agencies using an IQ score as the sole (or primary) determiner of functioning. Also, IQ scores are known to produce “false negatives” in some autistic people: they may be considered “intellectually disabled,” simply because their brain type isn’t compatible with the structure of typical IQ tests. Amy Sequenzia, an autistic activist, poet, and self-advocate, mentions that she was given an IQ of 25, which is considered severe intellectual disability. And yet she’s able to express herself in a way that someone with an IQ of 25 should theoretically not be able to do. People who have severe ID and actually fit the profile struggle with both oral and written communication. They have a hard time doing most everyday things required of people. Sequenzia is non-speaking and needs assistance with tasks of daily living, but she can also understand and interpret abstract concepts, write about her experiences, and look at her experience in a metacognitive way. These are all skills that go against the definition of intellectual disability. These tests can also produce false positives; there are also people with “gifted” IQs that struggle to manage daily-living tasks (Hi!). They may be able to solve complex intellectual problems, conduct innovative scientific studies, or write beautiful essays about the human condition, but laundry, cleaning, dressing oneself, and time management might be incredibly difficult for them. But because they’re seen as “too intelligent” to need services, they’re left behind. We haven’t even tried accessing support services because I know we’re going to be turned away “because your IQ is too high.” 

What makes the matter worse is autistic people who rank their own worth based on IQ or “functioning labels.” I think many of you know the kind: people who see themselves as being worth more because they have an IQ of 150 and are brilliant at a “hard” science, unlike those ~other~ autistics who have an intellectual disability and struggle more with certain tasks of daily living. Sorry to say, it doesn’t work that way. There are people who might have an “average” IQ score and be great at tasks that someone with a higher score might not. It happens all the time. There are folks with IQs of 170 who have a really hard time keeping their house up and managing stuff like bills, while people with scores of 100 can do it just fine. And it’s really ableist to claim that someone’s worth more because their IQ is higher, or that they’re worth less because it’s lower. By that logic, people like the Unabomber and the Boston Bombing Brothers must be WONDERFUL, right? I don’t think so. People’s worth shouldn’t be determined based on their functioning label or IQ. That just plays into that eugenics bullshit that still hasn’t been completely excised from disability discourse. 

There are plenty of folks with physical disabilities and high IQs who qualify for services. Why doesn’t the same principle apply to people with developmental disabilities that affect other aspects of their lives other than their ability to do well on standardized tests that may or may not be accurate predictors of their abilities? And why are we using functioning labels/IQs as a means to determine how much we value people anyway? 

[Kerry] Language as the medium of thought.

Some autistic people have talked about communication ‘underneath’ words. I think of it as being ‘interverbal’, being between words and underneath them, rather than being driven by words. They don’t specifically see words as the natural medium of thought, but imperfect explanatory devices to describe a concept that exists in their minds. At least that’s what I glean from it; my interpretation of it might be flawed, as my own experience is quite different. (If you tend to have that sort of thought pattern, correct me if you’d like?) 

I personally do think in language. Words are very important to me, and I can be sensitive to how they’re being used. That’s not to say that I prowl about policing how people talk, except if they’re saying things that are blatantly offensive (racial slurs, deliberately misgendering people, overt misogyny, etc). I used to be a prescriptivist, but I’ve moved away from that over the past four years. I will, though, have a strong reaction to it, even if I can keep from letting the other person know that that strong reaction exists. Your language is how I read what you’re trying to communicate. I’m not saying that I can’t read interverbal or nonverbal communication, but the language you use is the clearest signal for me. Richard is similar to me, but he’s better at recognising subverbal meanings than I am. (This makes him a lot more tactful than I am, because he can detect underlying meanings that I can’t always pick up on.) 

Noël, however, doesn’t, and tends to conceptualise his thoughts as a series of patterns, images and textures, which he later translates into language. He can usually pick up on those cues that I can’t, since his way of interpreting things involves picking up on patterns and senses that he has, rather than noticing the explicit words that someone uses. I may just take people’s words at face value, while he doesn’t. There are images and patterns and signals that he finds, and the words are a frame for those ideas that he has in his head, rather than the means of thought themselves. When he communicates with me within our headscape, he tends to send conceptual ‘bundles’ of communication, with intermittent verbal messages. This is in contrast to me, because I tend to just send words his way if I’m not trying to get a large amount of information to him all at once – in which case, I send out an information packet. 

James is somewhere in between, as are Darwin and Hess. They don’t have the same verbally dominated thinking style that people like Richard and me have, but they are still more verbal than Noël is. Darwin tends to use a lot of images and patterns and symbols. Hess is a combination of words and images. Hess and I tend to use words when communicating with one another, but he changes his communication style when dealing with other people like Darwin, Noël and James, whose thought patterns are less dominated by words than either Richard’s or mine are. 

So, yeah, we have a wide variety of ways that we deal with thought patterns, but then again, that’s what plurality means, doesn’t it? It’s interesting to see how our being differentiable relates to our being autistic and what that entails when it comes to our thought processes. 

[Kerry] What’s been going on.

Sorry for the lack of updates; we’ve been rather busy as of late, primarily with work, looking for housemates and other various things. And we are at a lovely gathering of autistic people! I’ll probably not go into detail, as we’re not out plural here, and I’d rather not go into long convoluted explanations about Who We Really Are whilst we’re here. Not that uncloseting is completely out of the question, but it’s…a lack of desire to want to have our identities dominate the discourse when this is about autistic unity. It’s not out of shame for who we are; we haven’t really been ashamed of it in a while. We are just not at the point in our lives where we feel comfortable telling people about who we are unless we feel as though we’re absolutely safe, or at least reasonably safe. 

We know there are other systems who are more forthcoming than we are, but I think that everyone has their levels of comfort. Even in spaces devoted to neurodiversity, there are different levels of understanding when it comes to experiences outside the particular type of neurodiversity that a community belongs to. (And even within a community — for instance, look at the tension between autistic people with different functioning label, or people with Asperger’s labels versus people with ‘High-Functioning’ Autism labels.’) Someday we’ll be more able to have confidence about being openly, well, us, but that day isn’t today. Not yet. Would we like to be more open? Absolutely. But I don’t feel as though the atmosphere makes it that easy yet. 

[Kerry] Perseveration Blogging: Pronunciation

(We’ve decided to occasionally blog about things we’re perseverating 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.

[Kerry] Communication Differences

(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. 

[Kerry] Perseveration, Plurality and Social Interaction

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. 

[Kerry] About writing, and direction, and labels, and other sorts of things.

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. 

[James] “Passing,” Early Diagnosis, and Identity

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. 

[Kerry] Adults, Autism and Assumptions

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. 

[James] Autism and Agency

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.

[James] Autistic People Should…

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. 

[James] This Typographic World

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.) 

[Kerry] Words Words Words, and the Attention Tunnel

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. 

[Kerry, James and Darwin] Articles that you should probably read.

[Kerry] Trauma, Autism and Guilt

[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] Autism + political ideology.

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

[Kerry] Bad.

[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.

[James] “Unlocking” Autism?

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.) 

[Kerry] Autistic Gender Stereotypes

[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. 

[Em] The Whitewashing of Neurodiversity

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. 

[James and Kerry] Why We’re Voting Against Romney

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. 

[Kerry] The Problem with Some ‘Autism Parents’

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.

[Kerry] Liminality and Invisibility on the Spectrum

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. 

[Kerry] Autism and the Ideal Student™ Construct

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 bullshittingor 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. 

[Noël] Curebies and Integration Evangelists

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.

[Em] Invisible and Visible Effort

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

[Kerry] WTF is this shit. (warning: curebie ideology)

We don’t post here as often any more, mostly because offline stuff has kept us so busy. That doesn’t mean that we’ve abandoned the blog, though.

So, we found a website by an autistic man, Jonathan Mitchell, who is apparently in favour of curing autism, both his own and others’, and is vehemently opposed to the neurodiversity movement. He runs a blog, Autism’s Gadfly, which is devoted to this worldview. I’ll place a warning there, since readers may be upset by the content. I certainly was, but I did want to address it.

The problem with this worldview is that it upholds the idea that autistic people are inherently broken, rather than different. And by being an autistic person who advocates curing autism, his own claims seem to be that he is an inferior human being, with his own existence being worth less than others’ because of how he perceives the world and moves through it.

Mitchell also grossly misinterprets the neurodiversity community, claiming that we completely ignore the struggles and difficulties that autistics encounter. This is bullshit—there’s really no other way to put it. Has he ever read any pro-neurodiversity or anti-cure autistic blogs? The autistic people who write these accounts of their lives are incredibly frank about the difficulties they contend with, and don’t attempt to claim that their existence is all fairy cakes and sparkles. We haven’t made any claims on this blog, and none of the autistic bloggers we know personally or whose work we’ve followed for some time have made any such claims. This doesn’t sound like a rebuttal; this sounds like the straw man logical fallacy, in which someone attacks a made-up version of their opponents in order to ‘refute’ their points.

The problem with the ‘cure-it-all’ mindset for autism is that it creates a hierarchy of humanness. People who are not autistic are intrinsically better, and worth more, than those who are. Curing autistic people allows them to be brought into the class of ‘worthy people’; their worth is negligible before that. Autism isn’t like cancer or diabetes—it’s an inborn neurological variance that has both beneficial and negative aspects. Are there struggles? Yes. Are there parts of autism that can be seen as disabilities? Of course. Does that mean that the entire form of neurological variance needs to be wiped out ‘for the good of the species’? No. All this cure-mongering and pandering by people like Mitchell and the Autism Speaks/Defeat Autism Now!/Jenny McCarthy/ad nauseam crowd isn’t helping autistic people succeed. It’s promoting a eugenicist ideology that wishes to wipe out all neurological variance. It’s homogeneity for the sake of social cohesion. This is not helping autistic people. This is wishing them out of existence.

I find this view morally repugnant. Be honest about your struggles, yes. But don’t tell people they don’t deserve to exist. Don’t pander to eugenicist ideologues who would jump at the chance to exterminate people like you. You are claiming that an autistic life is a life unworthy of life.

Discriminatory philosophies like to create hierarchies in which some people’s lives are worth more than others: men’s lives are worth more than women’s; white people’s lives are worth more than the lives of people of colour; straight and cis people’s lives are worth more than LGBT people’s lives; westerners’ lives are worth more than non-westerners’ lives; abled people’s lives are worth more than disabled people’s lives. And guess who’d be gone first? People like us: queer, non-white-bodied, autistic, neurodivergent, disabled. The human race is not homogeneous. I am completely fed up with the idea that total homogeneity in society is desirable and any outliers should be eliminated. It’s been done to LGBT people; it’s been done to autistics. It’s this fucking obsession with having to be like the majority of people in order to be a valid human being. Being different to others isn’t a crime. It’s not something that needs to be wiped out just because it’s different. I know that a lot of people do have negative reactions to difference because they aren’t used to it, or don’t know how to deal with it at first, but that doesn’t mean that the difference in and of itself is bad.

You know what? I refuse to be an inferior human being. We, as a group, refuse to call ourselves broken and inherently flawed simply for existing. Are things often difficult because we’re autistic? Yes. Does that mean that we need to clamour for a cure, or say that we are unworthy of existence as we are? Fuck no; that’s unnecessary. I’m sorry, I am pretty well convinced that I have the right to exist. This is what neurodiversity advocates are asking for. Not to ignore the difficulties that autistic people can struggle with, but to recognise that our existence and personhood are valid, and that our sharing physical and philosophical space in this world with non-autistic people is not a crime.

Different, not broken. Worthy of life, self-determination and success. This is what I am, this is what we are, this is what our community is. And this is what we will fight for, as long as we draw breath.

[Kerry and Hess] Disfigurative Language

There’s this misconception that autistic people necessarily struggle with complex or abstract thought.

That’s not completely true, at least not for us. It’s more complicated than that. Most of our seeming difficulties with ‘abstract thought’ aren’t related to ‘abstract thought’ at all, but communicating the relationship between certain figurative language devices and the concrete things they’re connected to, and a tendency to call up very literal visual images in certain situations.

We generally understand that figurative language isn’t to be interpreted literally, but there are still times when our minds call up literal mental images. For instance, there’s the phrase ‘hold a master’s degree’. Now, we know that it’s an expression, and not to be taken literally, but the first thing we (well, the two of us, anyway) think of is someone walking around with a degree certificate. That’s right—they ‘hold a degree’! The same applies to ‘hold down a job’; it’s as though a ‘job’ is a big fuzzy monster that needs to be held down, or it’ll get away from you. (And in this economy, it just might!) When our computer pops up a message asking to ‘send a report to Apple’, we’ll sometimes imagine a report being sent to an apple, even though we know full well that they’re talking about the techs at Apple Inc.

It’s difficult for us to pick out certain things when analysing literature, like identifying types of figurative language (other than the most obvious ones, like metaphors and similes), and even though we’re better at it than we were when we were younger, we still feel that we’re at a disadvantage compared to most people. Analysing nonfiction is much easier for us, even if the nonfiction deals primarily with abstract concepts. Although, as Noël said in an earlier entry, we have a hard time with books that express those ideas in impenetrable philosophical jargon, even if the ideas themselves are perfectly understandable to us. Read: Judith Butler, Jacques Derrida and other postmodernist philosophers. Interesting ideas, obscurantist prose.

But if you ask us to identify the literary symbols in a particular work when we’re writing a paper, we might pick out the ones that are most obvious to readers, but the subtler symbols may be massively more difficult to articulate in writing, even if we fully understand the piece as a whole, and what it’s trying to communicate. It’s not that we misunderstand the symbolism, as such, but that it’s more difficult for us to name and discuss those symbols with the same fluency that people without our perceptual differences might.

Sometimes we’re self-conscious about it, and worry that we seem ‘less intelligent’, even though it’s a difference in processing—we tend to articulate ideas that we notice in writing that are less codified than a lot of literary tropes. Cultural studies and identity, for instance, are things we grasp well, but identifying specific symbols in a poem or short story is honestly more difficult. It interests us less, to be honest, and…it’s not because we’re ‘philistines’ who don’t appreciate ‘high’ literature as much as it is because we’re just going to have a more difficult go of parsing it in a systematic way. We can communicate it well enough not to get bad or mediocre grades any more on these sorts of assignments, but it’s still something that we don’t handle as well. (Another issue is that some of us, like Kerry, only become passionate about fiction if the work is particularly special in a…weird, almost mystical way, and to be frank, most fictional works don’t have that effect, especially not ‘realistic’ ones.)

 

[Kerry] aesthetics, autism & computing

Joe Clark starts this blog entry off with an interesting and relevant premise: that empathy and thoughtfulness are necessary in design. He ends this, however, with a gross stereotype of autistics, claiming that they are worse at creating empathic interfaces.

Newsflash: not every single autistic person is a self-absorbed geek with no concept of aesthetics or empathy. This is a stereotype. Yes, developers who don’t understand the ‘user’ aspect of ‘user experience’ create bad websites and apps, but that’s not to do about autism as a neurological configuration. It’s a representation of the divide between design-orientated computer users and development-orientated users. Also, autistic people are perfectly capable of empathy, even if it doesn’t manifest in the same way it does for NTs.

Designers, like Joe Clark, value form as much as they do function; developers often prefer function over form, or function to the exclusion of form. This bears itself out all over the internet: developers will often have bare-bones websites with minimal visual stimuli; designers will try to make their websites visually appealing. I’d say it’s a ‘right-brain/left-brain’ divide, although the ‘brain lateralisation’ idea isn’t as scientifically sound as people once thought it was.

We’re autistic, as has been made abundantly clear here. I’m definitely aesthetically inclined, and often find myself getting frustrated at people who don’t consider aesthetics or design important. I’m—well, many of us are, with some exceptions like Hess and Sean—sensitive to subtle things like type rendering in operating systems, the quality of the typeface being used and the texture of the paper it’s printed on. I’ll notice if the type in a book—or a computer operating system—uses ligatures or not, for instance. (Fact: Mac OS X does, except in WebKit-powered apps like Safari; Windows didn’t until Vista, and they only appear in applications that support them—you won’t see them in WordPad, but they show up in Notepad under Windows 7; Ubuntu Linux does if you’re using GNOME or Xfce, thanks to FreeType.) Our primary operating system is Mac OS X—and there are several reasons why; one of those reasons is the aesthetic sensitivity. I find Windows’ type handling hideous (ClearType’s grainy rendering irritates me to an irrational extent), and it’s difficult for me to look at. It’s been like this for years: when we were younger, Richard couldn’t stand to see adverts and other material printed in typefaces he found hideous. There were very strong opinions about how letters ‘should’ look, for him, and for others. We, in general, don’t like to set our writing in Times New Roman or Arial, preferring other fonts that are both aesthetically pleasing and professional (eg, Garamond Premier Pro, Adobe Garamond, Arno Pro, Minion). Form is just as important as function around here. I’d go as far as to say that it’s a long-standing perseveration.

But at the same time, it’s not an indictment on people who value function over form, and make computing or typographical choices based on these preferences. It’s a difference, and good user interfaces require the collaboration of people with sensitivities to both form and function. The aesthetic needs I mentioned are an internal thing, only mentioned here to draw a contrast between what Joe Clark is claiming, and what the reality is, at least around here.

Are there autistic ‘geeks’ who are more concerned with functional interfaces than form? Yes, but that doesn’t apply to all of us, and the disablist, insulting language is completely inappropriate, whether you’re coming from a designer’s perspective or a developer’s.

[Kerry] I’m completely amazed.

To put it bluntly? Paul Lutus, you are full of shit.

Over the years, Lutus has written articles about the purported nonexistence of Asperger’s on two occasions: in his ‘Asperger’s by Proxy’ article, and in ‘How to Raise the Asperger’s Child’. He also discusses mental conditions more generally, in ‘The Myth of Mental Illness’. While I appreciate Lutus’ interest in deconstructing some culturally bound attitudes towards mental difference, his extreme behaviourist approach, reductionism and complete ignorance regarding the autistic spectrum are things I just can’t support.

Many of his posts, including ‘Asperger’s by Proxy’ and ‘How to Raise the Asperger’s Child’, include readers’ responses, which he intersperses with his own commentary. The most irritating responses have to be to the mother who wrote back to him about his ‘How to Raise the Asperger’s Child’ article.

He fallaciously assumes that autistic people have no interest in maintaining interpersonal relationships, and the fact that his correspondent’s son does demonstrate interest in relationships ‘proves’ that he isn’t on the autistic spectrum:

You are aware, are you not, that that is NOT an Asperger’s symptom? If (1) Asperger’s was real, and (2) your son had it, he would simply not care about having friends, and he certainly wouldn’t throw a tantrum about losing a game. Those “symptoms” arise in normal development and have nothing to do with either Asperger’s or autism generally.

Autistic kids cannot sustain relationships, don’t understand why that is important, and do not express the kinds of emotions you describe. Conclusion? Your son doesn’t have Asperger’s. (from the responses to ‘How to Raise the Asperger’s Child)

Incorrect. Autistic people may struggle with relationships, and may approach them differently, but like all other individuals, they each individually have their own ways of approaching other people and building relationships.

He also repeatedly refers to the autism spectrum as being a ‘mental illness’. Autism and Asperger’s aren’t considered ‘mental illnesses’; they’re developmental disorders, which are approached differently by both the DSM and by therapists in general.

Additionally, Lutus misinterprets the removal of Asperger’s from the upcoming DSM-V: rather than declaring Asperger’s a myth, the new DSM will view autism in a more nuanced way, rather than declaring that everyone who previously had an Asperger’s behaviour is now a poorly behaved, but intelligent, NT. They’re saying that Asperger’s is autism, not that it doesn’t exist. They’re criticising the name, not the existence of the condition. It seems as though he’s only read the New York Times article he linked to for its title, rather than actually examining the story attached to said title:

Above we read that Allen Frances, editor of DSM-IV, freely acknowledges that most current Asperger’s diagnoses are nonsense. And by reading further, we discover that psychologists now realize their mistake, and Asperger’s is being removed from the next edition of the DSM. To see how so many people could be misdiagnosed with Asperger’s, how Asperger’s could morph from an uncertain mental illness into a certain fad, we need to examine the field of psychology, the source for the condition and the diagnosis.

For someone who wants to declare baldly that his correspondent’s children don’t have Asperger’s, Lutus shows a profound lack of knowledge of both autism spectrum conditions and psychology in general. I’m not pretending to be an expert, but unlike Paul Lutus, I have firsthand experience with diagnosed, lifelong autism (I’ve personally been here for ten years, but right now, that’s beside the point). He doesn’t live our life, nor does he know us (or his correspondent), and has no place dictating the way in which another person’s brain functions, especially when he’s obviously ignorant of it.

[Noël] Inertia and “latency.”

Earlier, I discussed “latency” in the context of language production, but I find that for us, latency also exists when it comes to switching between activities.

Extremely pressing matters are usually addressed immediately, but less pressing issues  have less of a guarantee. This means that we can remember to pay our bills, but cleaning, cooking (if there is instant food or money for take-away available), phone calls, and certain appointments are subject to the latency period. Even obtaining refills on medications, or routine medical check-ups, are subject to latency, especially if we do not have a routine that specifically involves them.

We tend to be less “latent” during periods in which we have a set schedule of things to do. In these cases, we work in our tasks to complement our pre-existing schedule, and since our brain is used to already being occupied with things like studying, writing, and working, it is much easier to switch between more than one high-energy activity than it is when we are switching from a low-energy state to a high-energy one. During our off-time (for instance, when class is not in session and we are not doing our on-campus work), it is much more difficult for us to keep track of tasks than it is during our on-time, and many things lie fallow that really should not. It is not, as people here have mentioned before, mere laziness or procrastination: it is a manifestation of autistic inertia.

This is actually in force right now: we need to see the doctor for routine things, and to request a letter to verify a disability to a government agency, but since it is not a life-or-death matter, and because we are at rest at home, it will end up taking us much longer to finally get up and leave than it would be if we were going to the clinic from somewhere else. Because of this, it is actually ideal to schedule errands on the same day, so that multiple things are being done at once, rather than spreading the errands out over our off-time. Even though the spreading-out of errands seems as though it would be more useful for spoon-conservation, it does not help with our inertia-related difficulties. Of course, because of the inertia, we end up spreading things out anyway. It is often a vicious cycle that is difficult to break. This is why we are looking forward to actually being busy again with our classes: we will have something to do, and we will actually get things done.

[Kerry] Normality and ‘Deviance’

(crossposted from personal Tumblr account)

A lot of destructive philosophies that marginalise certain oppressed categories of people begin with the idea that people considered ‘deviant’ are not inherently different, but are altered ‘normal’ people. The way to deal with deviance under this philosophy is to restore ‘normality’ to these people, and cast deviance as either a pathology or sinful choice.

Let’s use plurality as one of our examples. The current medical paradigm for multiplicity implies that all plurality comes from an original person splitting because of extreme emotional trauma, and breaking off into several different sentient entities, often referred to as ‘alters’ and ‘personalities’. Only the ‘original’ person (commonly called the ‘host’ or ‘core’) is considered a ‘real person’. Another strain of thought, more popular in the 90s, asserts that splitting cannot occur, and that any perception of splitting is a delusion generated by the patient and doctors invested in the ‘multiple personality fad’. Both of these schools of thought operate on the idea that there is always an original ‘normal’ person who underwent a form of mental pathology; neither affirm the individual personhoods of plural systems, and neither challenge the ‘one body, one mind’ Western construction of personality. This isn’t to say that no multiplicity is trauma-based, but that the assumption that ALL plurality is trauma-based is fallacious. Also, both of the pre-existing paradigms imply that even within the accepted trauma-split paradigm, people who split cannot actually be people.

Things have changed for the better over the past few years, though, with many therapists willing to work within the plural paradigm without attempting to ‘normalise’ (that is, integrate) trauma-based plural systems.

For LGBT people, it’s a similar situation. Gay men, lesbians and bisexuals are fallen heterosexuals, fallen into a life of sin. Trans people are cast as diseased or sinful members of their coercively assigned sex. Transphobia extends beyond the fundamentalist paradigm—there are many ostensibly ‘progressive’ feminists who hold similarly transphobic ideas, with the same implication that trans people are ‘altered members of their coercively assigned sex’.The idea that LGBT people could be born queer is anathema to these people, because it destroys their worldview. How could people sin simply by existing? How could a corporeally-based feminism work when women can be born with any genital configuration? Instead of accepting the challenges, people retreat and claim that anyone who doesn’t fit their paradigm doesn’t exist, by definition.

A twist on this theme occurs amongst pro-cure ‘autism parents’—a lot of their rhetoric around their children involves mawkish stories about how their supposedly normal child was TAKEN BY AUTISM!!!11. Their entire life is about longing for typical children, and having a typical life, and making their autistic kids feel like shit. (Because, you know, even if some autistic people can’t speak, it doesn’t mean they don’t understand! Or have feelings! Sigh.) Our system is on the autistic spectrum. When we lived with the biofamily, we were constantly guilted for being autistic. Some of us, especially Hess, developed a lot of weird neuroses around the way our brain worked that we were only able to counter in adulthood.

The problem is that so many people place a premium on belonging to a majority group, rather than expanding their definitions of identity to include people who haven’t traditionally been included. The problem facing activists working towards the acceptance of marginalised identity groups is dealing with majoritarian ideas about conformity and personhood, and creating space to allow other identities to exist within mainstream society comfortably.

[Noël] Do what you feel, just how you like, nobody has to know.

This may sound silly, but I would like to try unorthodox employment-finding strategies, and novel approaches. I know that the common wisdom is to conform, and not seem to “strange,” so that prospective employers will have an impression of you that fits a particular cultural mould of the “ideal worker.” We have, in the past, tried “traditional” employment searches, and none of them have been fruitful. Any paid work we have done has been by means of personal relationships, whether they are direct or within a few degrees of separation. It has been entirely impossible for us to find paid work where there was no pre-existing relationship. Some of these struggles are related to the ways in which we handle social interactions, as autistic people; others are related to a lack of passion for most work outside certain areas in which we have special interests. There are some things that present quite a bit of difficulty for us, like traditional interviews. We received input on an interview in the past, in which people were obviously nervous and struggled with maintaining NT-style eye-contact. (I have mentioned, in the past, that it is difficult. To paraphrase an old entry of Amanda Baggs’s, it is “EYEBALLS, EYEBALLS, EYEBALLS.”) I know that there are workplaces that are more tolerant of quirky behaviour; it is just trying to find them, and deliberately going after those who are interested in having people whose thought patterns are atypical join their teams. Many companies, nonprofits, and individuals are looking for people who conceptualise ideas in ways that are novel or surprising, although most standard job-search advice is not geared to them. It is quite left-brained and linear, and too generic to apply to everyone, everywhere.

That being said, we have no interest in joining excessively corporate-minded workplaces. This is a mixture of both “odd-brain”-related reasons, and ethical concerns. And no, this is not “special snowflake syndrome,” in which we are acting as though we are too good to be like “normal people”; this is an honest evaluation of our skills, abilities, and interests, based on actual, lived experience. I disclaim this, not because I believe that the majority of plures.org’s readership believes such nonsense, but because we have seen a rash of posts elsewhere that claim that all neuroatypical people who wish to see society modify its views of different brain structures to be afflicted with the fictitious “special snowflake syndrome.”

I have ideas. Talking to people, feeling about for needed skills, writing to people. Not adhering to standard, staid formats, but emphasising that which makes us stand out, rather than that which makes us blend in. I do not mean writing laundry-lists of neurological differences; I mean skills that would be an asset to a potential workplace. Intellectual curiosity, empathy, technical knowledge, cultural sensitivity, artistic skills. That they are hearing from people, people with passion and commitment, not robots.

As Kerry said earlier, in the semi-distant future, we are strongly thinking of doing neurodiversity consulting. I do not wish to divulge too many details in this forum, but it is an idea. Right now, though, we need to carve out a niche for ourselves, and stop either trying to appeal to people who would have difficulty understanding the way in which our brain worked, or completely giving up and feeling as though we will never find anything appropriate. I think that this is possible, although it will take effort and planning to find something suitable.

I have passion, drive, and a keen interest in doing things that interest and excite me. I do not want…stereotypes and The System™ (not my headmates, but “the system,” meaning society and its prejudices) to get in the way of my pursuing something that is worthwhile, and works well with the way in which this brain functions. This is not idle snobbery, or an attempt to be “lazy” by avoiding the sort of work that students “typically” do; it is a recognition that we are atypical, and should not force ourselves into a mould that is ill-fitting and has brought us no gain over the years.

Again, like the self-advocacy post, this is a…reminder of my own accountability. If it is there in public, and there for me to look at when I load up our blog, I will see it, and remember it, and try to keep my word to myself. I have done it before, and I will do it again.

[Noël] “Systemising,” Jacob Barnett, and Autistic Stereotyping

On Tumblr, a few people reblogged an article about a 12-year-old boy, Jacob Barnett, who is developing hypotheses to explain the origin of the universe, and adding to Einstein’s theory of relativity. In the Facebook comments section, someone remarked, “It might seem unbelievable, but there is a reason why people with autism and aspergers are so adept at mathematical sciences.” This person continued with this, saying that autistic people in general are more adept at “systemising,” or understanding mathematical, linear concepts.

As complimentary as this person wished to be to Barnett and others like him, Simon Baron-Cohen’s hypothesis that autism manifests itself as extreme “systemising” is actually inaccurate. Firstly, it feeds into essentialist notions about sex and gender, claiming that systemising is an example of an “extreme male brain.” Additionally, it fallaciously assumes that autistic people in general are adept at linear and mathematical thinking, and all take pride in categorising and quantifying. There are people on the autistic spectrum who actually do not fall under this rubric of “systemising,” including many people in this group. We are not particularly mathematically gifted, especially not where computation is concerned. We are not terrible at it—the majority of us can manage to tot up figures well enough—but it is not a particular skill that we have. We are certainly not the sorts of people who would be astrophysicists at the age of 25, much less 12. We certainly have scientifically-minded people, but they tend towards the biological sciences and social sciences, rather than pure mathematics and physics. Even our resident physicist runs up against our difficulties with computation and quantitation. We are largely nonlinear thinkers, which makes it difficult for people here to understand mathematics in the way that it is conventionally taught in schools.

Baron-Cohen reduces autistic brains into “types,” rather than understanding that people’s interests and aptitudes can vary. There is an assumption that all autistic people share the same skills: we are all supposed to be programmers, economists, mathematicians, and physicists, not social scientists, artists, writers of fiction, or poets. The people we know on the spectrum are not solely focussed on Baron-Cohen’s definition of “autistic interests”; they each have their own fascinations and predilections, reflective of the diversity of people in general, rather than adhering to a facilely constructed rubric of how autistic people “ought to be.” We do not all swiftly reckon numbers in our heads; we do not all find solace in squares, logarithms, and asymptotes, as beautiful as mathematics and its logic may be. There are other things that people gravitate to: words arranged on pages, the feel of cool clay as it is being moulded, the metamorphosis of caterpillars to pupae in chrysalides to butterflies.

There were also some problematic aspects to the article on Barnett itself: it seemed to place people considered “early bloomers” on a pedestal. (But then again, it was from the Daily Mail; what can you expect?) This is difficult to handle, because people who are determined to conceptualise certain ideas earlier than others are considered more valuable or “intelligent” than those who come to those ideas much later in life. This is not to say that Barnett’s accomplishments are not remarkable; rather, it is to say that the article’s tone seemed to handle these accomplishments in a way that struck me as rather problematic, especially considering the opprobrium that people considered to be “late bloomers” receive. In our case, we exemplified both “early bloomer” and “late bloomer” tendencies: we were incredibly early readers (we started at around 2.5), and understood abstract concepts about identity and personhood (people here recall wondering if they were “real” or in someone else’s imagination when the front-body was 3 or so), but struggled with gross- and fine motor skills, basic social interactions, and executive functioning. Development is not a hierarchical ladder of “better” and “worse”; it is variable. It is the “soup” that Kerry referred to previously.

I think that this article about Barnett exemplifies many of the problems that seem to exist when discussing autism and developmental differences (whether they are considered “beneficial” or “deficits”)—the oversimplification, the reduction of complex people into lists of traits, and the constant comparison between “normal” people and the rest of us. I, for one, am tired of seeing articles like this about every single neurodivergent person who does something newsworthy.

 

[Noël] Executive Dysfunction and Personal Grace

Like many autistic people, we struggle with something known as “executive dysfunction.” Executive dysfunction is a difficulty with certain aspects of planning, organisation, and attention. For us, it manifests in confusion about certain processes that are seen as intuitive to others, inertia, and difficulty with many seemingly easy daily living tasks.

For instance, it has been nearly impossible for us to cook over the past month or so, even for people who normally have at least some skill at it, like Kerry. We have been primarily eating instant snacks or take-away because of this. In the past, we have also mostly lived on microwaveable meals for similar reasons. Yes, it is more expensive than it should be, and yes, we wish that there was a way to save money and not run up against executive-functioning difficulties. Cooking requires cleaning; it requires constantly watching that which is being cooked; and it requires time and patience. We cannot be guaranteed to have all of these things at once; sometimes, cleaning may not be difficult, but the watchfulness may be; at other times, we may have the attention to be watchful, but not the ability to manage cleaning.

The problem with many blogs, books, and other resources that advise people about saving money on food is that they assume a base functioning level that does not exist for many people, including ourselves. It would be quite nice if we could cook every day and not be reliant on others’ ability to do it. Nevertheless, we cannot, and we are trying to find the most economically sustainable way to handle executive dysfunction without spending too much money on take-away. Admitting this is difficult, because people are “supposed” to be able to do this without difficulty, but we cannot. It is frustrating, because we have found ourselves spending the majority of our disposable income on food, rather than saving it for other things, simply because we cannot cook on a regular basis. During the last few weeks of the semester, we found ourselves eating at cafés more often than not, mostly because we had papers to complete, and needed to have the consistent Internet access those places provided. In addition, if we are already out, going back home to cook is yet more energy being consumed that could be used on finishing papers or other things that are relevant to our studies and work.

Cleaning, too, can be difficult at times. It depends on the state of the room, the type of mess, and our ability to “tag” items other than those which are already “tagged” in our minds. For instance, I was able to organise most of our things in the new room, but that came after a day that primarily consisted of conserving our energy, and yesterday, we spent most of the day conserving energy as well, to recover from the loss of “spoons” from moving house. Tomorrow will be similar, I suspect: conserving spoons, lying down, hunkering down to prepare for the next onslaught of tasks. But if there is constant cleaning, and if a place is already messy, or is large and full of things, it is much more difficult to concentrate. We cannot work at jobs that require cleaning, other than clearing out objects once in a while. Otherwise, it would be overwhelming. In our old flat, which was already messy when we moved in, it was quite difficult for us to concentrate on most cleaning tasks at all. Some of it was related to the way in which we visually and conceptually parse spaces, and some of it had to do with the aforementioned difficulty in organising and planning in the first place.

When you have limited resources to manage daily living tasks, you cannot always go at it brazenly, attempting to “do all the things” in one fell swoop. You have to take it one day at a time, managing things slowly, trying to maintain the balancing act of skills, economy, and energy. Sometimes I worry about how difficult this balancing act is becoming, as our responsibilities increase over the years. My goal is to make things more graceful, more sustainable, less frustrating. I feel as though some of those things are falling into place: finding space for all of our things, remembering to take time to shut down for a bit, without jeopardising our ability to do things that we absolutely must do. I want to manage the executive dysfunction so that it is not as costly, irritating, or troublesome as it is right now. We manage it better than we used to, but it needs to be improved. I—well, everyone here—should realise that there is no shame in asking for help when it is needed.

 

[kerry] change and closets

So, we just recently moved house, which is always stressful. While we have more physical privacy, we’ll be going from a plural-, autistic- and trans-friendly setup to one in which nobody knows about any of it. While we had to move, I don’t share Noël’s optimism about it 100%.

Especially since we tend to be quite conspicuously ‘different’ in private. And none of us was even under the delusion that we’d actually find something where we could disclose ANYTHING. Part of that is our own fear; part of that is us not wanting to be too demanding. We honestly don’t have the courage to disclose our headstuff except online. But I wonder how much longer we’ll be able to keep up the pretence. We have enough passing privilege to not have to disclose being trans. That’s not as much of a big deal as the autistic/plural stuff.

Maybe it’s just our weird reactions to change–a lot of autistics react to change in different ways to NTs–after big life changes, initial reactions tend to be negative for some of us, including me. We can be adaptable people but it takes tonnes of effort and work. We’ll adjust and not compromise ourselves too much; it’s just a matter of coming up with good solutions.