Neurodiversity » Language

Introducing The Loud Hands Project

Mark Stairwalt — Mon, 09 Jan 2012 06:05:22 +0000

Julia Bascom, author of “Quiet Hands” and “The Obsessive Joy Of Autism,” is launching a new project, pursuing ends that parallel and surpass some of the goals pursued at Shift Journal over the past twenty or so months. From the website (edited somewhat for context and clarity):

“Loud Hands: Autistic People, Speaking is to be the project’s foundational anthology, featuring submissions by Autistic authors speaking about neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands). The anthology is the first of a projected series featuring contributions from Autistic writers stressing the preservation and celebration of Autistic culture and resilience. The Loud hands website will host shorter and multi-media submissions along the same lines, along with additional materials and videos, and serve as a focal point for the project and community.”

“With an overarching commitment to undoing the cultural processes and ghettoization that make autistic people strangers to ourselves and spectators in our own stories, The Loud Hands Project consists of multiple prongs organized around the theme of what the Autistic community refers to as ‘having loud hands’ — autism acceptance, neurodiversity, Autistic pride, community, and culture, disability rights and resistance, and resilience. The focus is on cultivating resilience among autistic young people and empowering the Autistic community writ large in building communities and cultures of ability, resistance, and worth. To quote Laura Hershey: ‘you weren’t the one who made you ashamed, but you are the one who can make you proud.’”

For further details including a roadmap for the ambitious future of The Loud Hands Project as well as an opportunity to contribute see the project’s IndieGoGo site here.

Caregiver angst writing

Sarah Schneider — Wed, 21 Dec 2011 06:00:51 +0000

The recent explosion of the #youmightbeanautismparentif tag on Twitter and the Stephanie Rochester case are two good reasons to spend some time thinking about the “caregiver angst” genre: writing by parents and caregivers about pain, stress, grief, worry, and exhaustion—all usually assumed to be associated with caring for someone with a disability.

A lot of the writing on this theme is blatantly offensive and inexcusable (people with disabilities are a burden, are ruining my life, are keeping me from living the life I was supposed to have, etc.) A less hateful version includes the writing about how painful it is to watch the suffering of someone you love.

Writing about a difficult, isolating experience can help other people feel less alone. I did a lot of this kind of writing when I started this blog. Many people find catharsis and community in writing about their struggles as a parent.

But I am not interested in catharsis or community for one group at the expense of another whole community’s safety, and I have come to believe that a lot of the caregiver angst writing contributes to an unsafe environment for people with disabilities. There’s always a way to write about your life without reinforcing damaging ableist attitudes — as long as you (1) think through the ways in which ableism informs your experience as a caregiver, and (2) take the time to put your experience in context when you write about it. Unfortunately, most of the writing I’m talking about (including much of my own writing from a year ago) does neither.

s.e. smith’s recent essay on Pity Porn and Social Responsibility helped me understand why the lack of context to most caregiver angst bothers me so much: it reframes societal problems as individual problems.

smith uses the example of a newspaper’s charity fund appeal for a “family in need.” The story includes photos of sad hungry children, and at the end it asks readers for a donation for food or Christmas gifts. But it does not examine the societal problems that lead to food insecurity—hunger is framed as an individual problem with an individual solution. Give some cash, and then disengage.

Most parenting blogs are not fundraising appeals or advocacy writing. But they are full of personal narrative—lots of story, very little context. Most of them are not in the business of social analysis, proposing solutions, or issuing calls to action. It’s a different writing style, and it has a different formula and different goals.

There is nothing inherently wrong with personal stories, of course. But the cumulative impact of all these stories without social context is to reinforce the dominant narrative about what it’s like to care for someone with a disability.

Context is the difference between saying “I’m exhausted,” and ”I’m exhausted because our HMO offers no services for pediatric mental health, but forced me to fill out reams of paperwork and wait months to get appointments with a dozen gatekeepers, each of whom is 90 minutes away from me on public transit, just so they could tell me they actually don’t provide those services anyway.”

The first statement (“I’m exhausted”) describes an individual problem. It ignores the role that institutional structures play: a health care system driven by profit; an educational system designed for the able-bodied and typically-wired; an economic system that assigns zero value to the work of raising children and requires parents to work for pay to survive; the segregation, exclusion, and resulting invisibility of people with disabilities, which frames disability as a rare and tragic stroke of bad luck rather than a normal part of human diversity; the American belief that everyone “deserves” a life free from the “burden” of caring for another person.

These are collective problems, societal problems, and my exhaustion would not exist, or would at least be very different, without them. When I write about exhaustion without acknowledging that context, I reinforce a particular set of beliefs about people with disabilities—ideas that are damaging, dehumanizing, and already way over-represented in the media. It’s the set of beliefs used to justify the abortion of babies with Down syndrome and the abuse and even murder of children with disabilities, because it is widely perceived to be “so hard, so painful, such a burden” to care for them.

I am not placing the blame for Stephanie Rochester’s murder of her son on negative writing about autism on parent blogs. It’s much more complicated than that, of course (more here and here). Stephanie Rochester was mentally ill, and postpartum depression likely played the biggest role. But the context surrounding the murder includes all the societal problems I described above, and caregiver writing that does not examine that context contributes to the problem.

And so, back to #youmightbeanautismparentif on Twitter—the ultimate no-context medium, in which every tweet is a tiny personal narrative.

Not every tweet was offensive. Some parents had positive, goofy, sweet, or proud things to say about their kids. But a very unscientific random sample over the course of just a few hours also included these:

● #youmightbeanautismparentif you worry about the toll caring for your child 24hrs a day FOREVER will have on your marriage

● #youmightbeanautismparentif you say TGIM instrad of TGIF

● #youmightbeanautismparentif Ur child is non verbal, and when you hear other autistic kids speak, u wonder if you drew a short straw :/

● #youmightbeanautismparentif you cracked a front tooth when you clenched your teeth to avoid yelling at your kid who was on your last nerve

● #youmightbeanautismparentif You never think you’ll be partnered again because no man will want to take on the extra responsibilities of Autism

● #youmightbeanautismparentif you’ve given up hope of a full night’s sleep

● #youmightbeanautismparentif you’ve stopped buying things for your house because you know whatever it is will be wrecked within an hour

● #youmightbeanautismparentif watching your 3 1/2 year old flap breaks your heart

This last one, in particular, desperately needs some context. There is a big difference between saying “It breaks my heart that my child is autistic” and “It breaks my heart that my child—who is perfect exactly the way he is—will grow up in a world that sees him as less than human; that will define him by his “deficits,” rather than his strengths; that will bully and shame him into modifying his behavior; and that will force him to internalize judgments made against him until he loses his sense of self.” But without context, this tweet will almost certainly be read as “I’m sad that my son is autistic, because that’s an inherently sad state of affairs.”

I know lots of parents felt a great sense of community from the Twitter exchange. The positive tweets probably outnumbered the negative ones; I didn’t have the stomach to read and count them all. But I don’t feel a sense of community from a group of people venting about how awful it is to have a kid like my son, about how autism has ruined their lives. It makes me sad, angry, alienated, and confused about whether there’s a place for me in that community at all.

The solution is not to gloss over, sanitize, or stop writing about difficult times. Everybody has bad days, and we all have the right to describe our experience. But I have come to deeply regret my own past failures to examine the context behind those bad days.

What I’ve learned from my mistakes is that I’m no longer interested in reading or writing about exhaustion, stress, and grief without also addressing the context that gives rise to these feelings. Context places blame for our struggles squarely where it belongs, and eliminates the possibility that it will be mistakenly assigned to our children.

Sarah Schneider blogs at Kitaiska Sandwich.

Caregiver angst writing appears here by permission.

Response

Julia Bascom — Wed, 14 Dec 2011 06:00:28 +0000

When I was a little girl, I was scared.

That sentence has taken two months to write.

When I was a little girl, I was scared.

When I was a little girl, I was a lot of things. I was functionally blind, and other kids teased me about my huge, staring eyes. When I was a little girl, I was somber. When I was a little girl, I was remote. When I was a little girl, I was devout.

When I was a little girl, I was scared, and I was alone.

*****

I don’t know how to tell you about growing up scared and alone, except that I don’t want to, and maybe that says enough. I can tell you, though, what changed. What changed is that I was fifteen, and I found this.

I was fifteen, and I spent months circling Amanda Baggs’ site, skimming the front page (the background and url were different then,) afraid to click on any of the posts, testing and tasting the words autism and autistic and okay over and over in my mouth. I had found someone like me. I had found someone like me, and they were fine.

It was months before I could look at this straight on, accept it, and click a post to read. Eventually I was brave.

When I was fifteen, I stopped being alone.

When I was fifteen, I stopped being alone, and that meant I could stop being scared.

*****

A little more than a month after I wrote Quiet Hands, I woke up and found that the number of hits on this site [i.e. Just Stimming -- ed.] had erupted. Quiet Hands had gone viral, and there were a dozen comments waiting in moderation, links all over facebook, emails. I was bewildered–it was a stupid, personal post I’d written in the middle of the night to process a flashback a terrible character on a wonderful show had triggered–and overwhelmed by the attention. My friends can attest to my state that week–head-banging, bewildered William Schuester did something good by accident, obsessively relaying the ever-increasing hit-count as my words died out. I told one of them:

The irony in writing about what I write about is that you write about not-existing, and then you very suddenly exist.

I’m not so good at handling that.

But as I adjusted, as I pieced together the history of what happened and approved comments and somehow, strangely, kept existing, I started being able to read what people were saying. I started getting emails from parents who wanted me to know that they’d brought the piece into IEP meetings and had it written into the IEP that their child would be allowed to stim and move, from parents who’d talked to their child and asked if this had happened to them, told them to come and tell if it ever did, from teachers who’d thrown away their Quiet Hands posters.

I get a couple of these a week, now, and I’ve never been able to respond because I cry every time I read them.

*****

When I was a little girl, I wanted more than anything for someone to tell the loud, looming people to stop.

*****

(No one ever did.)

*****

There’s another class of responses I’ve gotten. Autistic people, writing in. Sometimes only a word, a word scraped out and bled through with meaning I understand and never will be able not to.

Yes.

*****

Thank you.

In my school, it was “sit on your hands.”

You remind me I’m a person.

I feel a little less alone.

******

I see another little girl, flapping in the pharmacy.

Raising my arms comes a little easier, every time.

Julia Bascom blogs at Just Stimming.

Response appears here by permission.

Julia Bascom has recently had a second viral hit, an essay republished here at Shift Journal. As of this writing
The Obsessive Joy of Autism is still going strong and has just surged past 20,000 views. –ed.

[image via Flickr/Creative Commons]

related: Stuff And Also Things

related: The Obsessive Joy of Autism

Introvert Survival: Diaries

Zygmunt — Mon, 12 Dec 2011 06:00:52 +0000

When we think of diaries the first image that comes to mind is the popular image. A slim volume with lots of pink hearts all over the cover. It might have a little toy lock on it so that its contents might be absolutely private. Most of us probably know the common irony of these teenage diaries as seen on movies and TV. Under lock and key, guarded like treasures are the most mundane and unremarkable of thoughts. The whole joke is that having ‘secret’ writings is just another ploy for attention with little real content underneath.

Clearly such a diary is just a toy for overgrown, self-indulgent children…

I began keeping a diary around the age of 17. I have kept it going continuously for several years to the present day.

Keeping a diary is an enormous asset to an introvert on the edge of survival. When there’s no one to talk to, the blank page always lends an impartial ear. Discussing pressing issues, even on paper removes mental weight and relieves an overwrought mind. To put experience and feelings into words makes them more tangible. And problems that can be grasped can be dealt with. Over time, one might well discover that once insurmountable problems have been mapped out in detail and overcome, all without one even being aware of it.

Diary writing is a skill. At first one might be amazed at just how difficult it is to get past all the mental noise and discover our true feelings and concerns. Diaries no doubt have their terrible reputation in part because most people who attempt it never get past their petty internal noise. Yet any person accustomed to regular inward thought should be predisposed towards quickly moving past the initial barriers. The rewards of doing so are inexhaustible

Keeping a diary is a ritual act of emptying oneself. Hence one always feels lighter afterwards. When one feels isolated and alone, even the removal of a feather from one’s personal burden makes a huge difference. In a life where one’s soul lives at the subsistence level, a diary can sometimes be the margin between starvation and survival. Since diaries are made to seem silly and frivolous in the popular culture: I cannot sufficiently emphasize their importance in keeping a healthy mind.

A diary is a means of keeping track of one’s own personal progress and patterns. A long term diary writer can hold themselves to account in a way most people never can. Most of us make excuses about what we do and why we do it. This becomes a lot harder to do when we look back on an entry from a year ago and see ourselves doing the same old thing. One who keeps a diary can perform audits on their books. In time the inherent mission of a diary writer becomes obvious: That the future self reading back on each entry be a better, wiser self.

A diary is a time machine:

It allows us to exist more gracefully within the flow of time.

It allows us to see the flow of our thoughts from outside of time.

When I first started keeping a diary as a teenager, there were some things I quickly discovered:

I found that every time I wrote ill words about someone, I always looked back on it later with shame. It always seemed so petty and shallow in retrospect, so obvious that my written disenchantment only placed me under their power. I never again mentioned people I didn’t like by name and never again went out of my way to focus on them. In one step I was liberated from a good measure of my own reactive spite. This new control over myself also made me less vulnerable to social expectations. I was a step closer to social immunity years before the idea ever occurred to me.

The people and events that seemed important in a given moment were rarely still important when I looked back even a few months later.

The overhead, extra-temporal view given me by the diary allowed me to discover what things were truly important.

I learned what things endure and which quickly become irrelevant and forgotten.

I learned that the big, central things are not always important and that it’s often small or peripheral things that stay with us through time.

The size of events does not matter so much. A diary helps reveal to us what things are spiritually the largest in our lives.

In a matter of months, I was learning lessons that most people don’t seem to learn in an entire lifetime. A diary is one of the greatest teachers one can ever have, without a doubt one of the supreme tools of introspection.

Diaries are ideal for recording and developing ideas. I’m sure most people have good ideas all the time. The trouble is that they remember only a few of them. The few that are remembered have to be held in valuable mental space until they too are forgotten. A diary allows us to grasp these fleeting moments and store them. The mind is then free to come up with more good ideas. Actively focusing upon and storing these ideas makes it progressively easier to come up with them in the first place.

Many of the ideas that became this blog began as diary entries. At first these ideas were mere ventings. Because they were written down, however, I was able to develop them and then build on them. Taken one piece at a time, one can actually attempt to make some sense of this world.

A diary can allow us to sort out and make some sense of a cluttered confused mind. A simple blank book and something to write with can accomplish feats that expensive paid professionals could never aspire to.

A diary is one of the greatest possible assets for one who has a quiet spirit and feels renewed in times of solitude. It can nearly by itself sustain one through loneliness and suffering. It serves as a chronicle and repository. It provides friends and a social life. Every time you open that book, you’re in a room full of people from the past who share your name and identity, but are never the same person as you’ve become.

Zygmunt blogs at Kingdom of Introversion (and elsewhere).

Introvert Survival: Diaries appears here by permission.

[image via Flickr/Creative Commons]

related: A Dream Diary

The Obsessive Joy of Autism

Julia Bascom — Wed, 30 Nov 2011 07:19:16 +0000

I am autistic. I can talk; I talked to myself for a long time before I would talk to anyone else. My sensory system is a painful mess, my grasp on language isn’t always the best, and it takes me quite some time to process social situations. I cannot yet live on my own or manage college or relationships successfully. I can explain, bemoan, and wish away a lot of things about me and my autism: my troubles finding the right words to say what I really mean, my social processing lag and limits, my rubbery facial expressions, my anxiety, my sensory system’s dysfunctions, my brain’s tendency to get stuck in physical self-destruct mode and land me in the ER. I can complain about the suckiness of being socialized and educated as an autistic and as an outsider, about lack of supports and understanding and always needing to educate.

One of the things about autism is that a lot of things can make you terribly unhappy while barely affecting others. A lot of things are harder.

But some things? Some things are so much easier. Sometimes being autistic means that you get to be incredibly happy. And then you get to flap. You get to perseverate. You get to have just about the coolest obsessions. (Mine are: sudoku and Glee. I am not ashamed.)

Now, maybe you do not understand. Because “obsession” and even “perseveration” have specific dictionary and colloquial meanings which everyone uses and understands and which do not even come CLOSE to describing my relationship with whatever I’m obsessing on now. It’s not just that I am sitting in my room and my heart is racing and all I can think about is Glee and all I want to do is read about it and talk about it and never go to sleep because that would take time away from this and that has been my life for the past few days. It’s not just that I am doing sudokus in my head or that I find ways to talk about either numbers or Glee in any conversation, including ones about needing to give a student a sensory break so he’ll stop screaming and throwing things.

(It’s not just the association and pressure of shame, because when ever an autistic person gets autistically excited about something, there will be people there to shame and bully them, and some of us will internalize that shame and lock away our obsessions and believe the bullies and let them take away this unique, untranslatable joy and turn it into something dirty and battered.)

It’s not any of that. Those are all things neurotypicals can understand and process. This goes beyond that. It’s not anything recognized on the continuum of “normal”.

It’s that the experience is so rich. It’s textured, vibrant, and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear.

It is beautiful. It is perfect.

I flap a lot when I think about Glee or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.

This is the part about autism I can never explain. This is the part I never want to lose. Without this part autism is not worth having.

Neurotypical people pity autistics. I pity neurotypicals. I pity anyone who cannot feel the way that flapping your hands just so amplifies everything you feel and thrusts it up into the air. I pity anyone who doesn’t understand how beautiful the multiples of seven are, anyone who doesn’t get chills when a shadow falls just so across a solitaire game spread out on the table. I pity anyone who is so restrained by what is considered acceptable happiness that they will never understand when I say that sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your mind runs on the familiar tracks of an obsession and lights your way through the day.

It takes a million different forms. A boy pacing by himself, flapping and humming and laughing. An “interest” or obsessions that is “age appropriate”—or maybe one that is not. A shake of the fingers in front of the eyes, a monologue, an echolaliated phrase. All of these things autistic people are supposed to be ashamed of and stop doing? They are how we communicate our joy.

If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.

This is about the obsessive joy of autism. So I guess, if I’m trying to explain what an obsession (and, by necessity, obsessive joy) means to me as an autistic person, I can bring it back to the tired old image of a little professor cornering an unsuspecting passerby and lecturing them for half an hour. All too often this encounter is viewed through the terrified eyes of the unwillingly captive audience. I’d like to invite you to see through the eyes of the lecturer, who is not so much determined to force their knowledge into you as they are opened to a flood of joy which they cannot contain.

And why would you want to contain something like that?

Julia Bascom blogs at Just Stimming.

The Obsessive Joy of Autism appears here by permission.

[image via Flickr/Creative Commons]

Socializing through silence

Melanie Yergeau — Thu, 17 Nov 2011 06:00:56 +0000

I wish you wouldn’t interpret my silence as silence.

My silence is, in fact, a compliment. It means that I am being my natural self. It means that I am comfortable around you, that I trust you enough to engage my way of knowing, my way of speaking and interacting.

When I dilute my silences with words — your words, the out-of-the-mouth and off-the-cuff kind — I often do so out of fear. Fear that my rhetorical commonplaces — the commonplaces that lie on my hands, sprint in my eyes, or sit nestled in empty sounds — will bring you shame. Fear that my ways of communicating will be branded as pathology, as aberrant, as not being communication at all. Fear that I will lose my job. Fear that I will lose your friendship, guidance, or interest in me. Fear that I’ll be institutionalized. Fear that I will be infantilized. Fear that I’ll be seen as less than human.

This isn’t to say that my use of your language is always a product of fear. There are times when I genuinely want to use it, understand it, and learn about and from it. I understand that speaking is how you prefer to communicate. I understand that speaking is how you best learn and interact. I understand that you take great joy in speaking and listening to others speak. And I do, I really do want to share in that joy.

But the burden can’t always rest on me. I have a language too, one that I take joy in, one that I want to share. And when you deny me that — when you identify my silence as a personality flaw, a detriment, a symptom, a form of selfishness, a matter in need of behavioral therapy or “scripting” lessons — when you do these things, you hurt me. You hurt me deeply. You deny me that which I need in order to find my way through this confusing, oppressive, neurotypical world.

My silence isn’t your silence. My silence is rich and meaningful. My silence is reflection, meditation, and processing. My silence is trust and comfort. My silence is a sensory carnival. My silence is brimming with the things and people around me — and only in that silence can I really know them, appreciate them, “speak” to them, and learn from them.

Speaking is an unnatural process for me. When socializing through speech, I will almost always be awkward, and I am OK with that awkwardness. In fact, I am learning to embrace that awkwardness, learning to reclaim and redefine that awkwardness. I am sorry you’re not OK with that, sorry that you feel I need to practice, or take anti-psychotics, or frequent the university hospital’s psych ward. I’m sorry that you won’t appreciate me for who I am and how I operate in the world. I’m sorry that I can no longer consider you an ally, confidante, or friend.

Melanie Yergeau is an assistant professor of English at the University of Michigan. She blogs at aspie rhetor.

Socializing through silence appears here by permission.

[image from original post]

Darmok and Jalad at Tanagra

Mark Stairwalt — Tue, 08 Nov 2011 06:00:32 +0000

The following is a mashup of two blog posts from two very different spheres of experience, presented without comment save for this:

One is a brief, humorous account of the television-viewing habits and nerdy shorthand shared by a software developer and her sympatico husband. The other, in the inset paragraphs, is an excerpt from an explanation of a young autistic boy’s reliance on a similarly television-based shorthand, delivered by his mother to the boy’s classmates. Together all the more suggestive of the notion that “Nerdery,” as is observed below, “is a continuum.”

_____________________

I’m finding comedy works best to keep me from dwelling on how much longer I’m going to be on an elliptical machine, treadmill or what-have-you. So earlier this week it was an old standby, Office Space. (If you haven’t seen it, suffice it to say that it’s sort of a cult classic for programmers.) Coincidentally, this was also the same week that someone decided to riff on one of the movie’s plot-points and steal fellow programmer’s red Swingline stapler. Twice.

And so, my foundational analogy successfully delivered, I began addressing some of the common questions that the children had asked about Bud’s behavior.

The first: Why does Bud repeat things from TV?

“Remember how I told you that language is one of the things that’s difficult for people with autism?” I asked the wacky-haired, toaster-brained group, who nodded enthusiastically. “Well, that has been true for Bud ever since he was really little. He learned to talk in a very different way from most people.

“Most people learn to talk by learning one word at a time – like, first they say “Mama,” and then they say “juice.” And then, when they get a little bit older, they start to put words together and they say things like “Juice, Mama?” For most of us, our brains automatically learn to talk that way.

I polished off Office Space and turned back to Monty Python and the Holy Grail, riffs from which are unavoidable in the SCA. That’d be like trying to play golf without at least one wink-wink-nudge-nudge reference to Caddyshack.

“But Bud didn’t learn to talk that way. When he was really little, around the time that most of you were saying “Juice, Mama?,” Bud didn’t talk at all. When he wanted juice, he just walked over to me and handed me his cup.

“And then, as he got older and he started to use words, he didn’t use one word at a time. He used his great memory to learn whole sentences that he would repeat back. So I would ask “Do you want some juice?” and Bud would reply “Do you want some juice?” And his brain learned that the words you say when you want juice are “Do you want some juice?”

“So, later, when he wanted juice, he would just walk up to me, hand me his cup, and say “Do you want some juice?” And I would know what he wanted. This way of talking is called echolalia. It’s similar to the word ‘echo’ – hearing the same thing back after you say it.”

I heard some soft wows and ohs around the room. I think I heard a few light bulbs click on.

Bad enough that Dennis & I have already trained each other to phrase “or”-type questions (as in, “Do you want four cheese or meat-lover’s supreme?”) without expecting the answer to be an obligatory “Yes.” Or “True” or “1″ if someone’s feeling exceptionally nerdy. But then I made the mistake of remembering the phrase, “Darmok and Jalad at Tanagra.”

“Now, remember how we said that one of the things that Bud’s brain is REALLY good at remembering things? Remember how I said he can remember whole TV shows after he’s only seen them a couple of times? That was true even when he was really little. So, once Bud learned that saying things like “Do you want some juice?” could actually get him some juice, he started exploring the other chunks of language that he knew, to see how he might be able to use that, too.

“In other words, when he wanted to say something, it was really hard for him to try to put words together to make sentences, but it was very easy for him to think of scripts from TV shows that were about the things he wanted to talk about.

“As Bud got older, he learned to swap out words from scripts – he’d take out the words that didn’t fit, and put in words that fit better. And as he got even older, he started learning how to put sentences together the same way that you do – he started learning how to make language toast with his hair dryer brain.

“Now, Bud can do both kinds of talking – putting his own sentences together and using scripts. But because of the way his brain works, it is still easier for him to use scripts.

(If you’re not a Star Trek: The Next Generation maven, here’s the schtick: The Federation has bumped into (yet another) alien race that (surprise!) just happens to be recognizably humanoid. Moreover, the Universal Translator can even babblefish–yes, I just used that as a verb–their language into English words. Problem is, it still doesn’t make sense, because the Tamarians exclusively communicate allegorically–meaning through references to stories from their history. Think of it as tribal knowledge on steroids.)

“It’s especially easier for Bud to use scripts when he is feeling very strong emotions. When Bud is feeling sad, or angry, or frustrated, his brain is busy trying to deal with those feelings, so he doesn’t have a lot of extra energy to try to put words together. Instead, he finds the words that somebody from TV was using when they felt the way he is feeling.

“So, how many of you have ever seen Bud get angry and heard him say ‘That’s it! I’m leaving!’?”

I shouted out the words with the tone and inflection that I knew were classic Bud. Every hand shot up.

“Yeah, he says that a lot, doesn’t he? That’s Minnie Mouse from The Mickey Mouse Clubhouse. She was REALLY angry and REALLY frustrated.

At first I thought, well, we’re not that bad. But then I realized–particularly after being chagrined at how much of the “Brave, Brave Sir Robin” song I’ve forgotten–that any nerdery is a continuum. Meep! Ummm…how many restroom stops until Tanagra?

“Sometimes, when he’s frustrated because he can’t get what he wants, he might use a script from Dragon Tales. It’s from a show where Zak and Wheezie want to play the wolf in a puppet show of The 3 Little Pigs. If they can’t be the wolf, they don’t want to play. So they say “No WOLF, no Zak and Wheezie!” But Bud usually changes the words when he uses that script. So on a day when he’s frustrated because Mrs. Nee tells him it’s not snack time, you might hear him say in the very same way as Zak and Wheezie, ‘No SNACK, no Bud-NOS.’

“But, as I said, when his emotions are really strong or really difficult, he usually doesn’t change the words at all. He just uses the words from the script because they really capture the emotion he’s feeling.

“So if you hear him say something and the words don’t match what’s going on at all, don’t think about the words he’s using. Try to think about the feeling that might go along with those words, and it might help you understand why Bud is saying them. Sometimes, you can even ask him, ‘Bud, who said that? What made them say that?’ And very often, he will explain it to you.”

A thoughtful silence filled the room.

[image via Gifts for a Geek]

related: On Literal Thinking

A Question of Humanity?

Autism & Oughtisms — Fri, 23 Sep 2011 06:34:41 +0000

Autism is often referred to in ways that dehumanize autistic people: That autism leaves a child seemingly soul-less; that the person once present in that body and mind is now missing or unreachable. That autism robs something from the person which otherwise makes them part of the human race; such as social intelligence or empathy more broadly. Or that autistic people are robots; more interested in calculations and computers than people.

To a limited extent, these sorts of statements are responding to the very real and important challenges that autism poses. Autism does indeed affect expected social interactions, “mind-reading”, eye contact, and the sorts of interests that become fixations / passions for autistic people. But the dehumanizing language used to convey these problems – talk of robots and lost souls – goes beyond observation of the challenges and expressions of concern. Rather, that sort of language deeply stigmatises and damagingly misrepresents the experiences and capacities of autistic people as a whole.

Often the most heated rhetoric comes hand-in-hand with efforts to stimulate government and public interest and concern in autism; to encourage funding into causes and cures, but also to raise awareness more generally. When parents in particular, try to make others understand how hard their lives and the lives of their children are, it is understandable that they turn to emotive metaphors. Metaphors that shock, and capture the imagination.

But with autism still being so poorly understood by the general public, such metaphors seem to have taken on a life of their own, so that autism is now more than the definition you find in professional manuals used to identify autistic people. So much so that I have read of people with Aspergers being told that their diagnosis must be mistaken because they care what other people think of them; that there is something inherent in autism that not just makes it less likely, but makes it impossible for them to experience empathy (for example).

Fighting these sorts of attitudes and opinions on autism, puts autistic people and their families in the position of having to defend their very humanity in the eyes of others. As if their starting point is “less than human” and they must prove their humanity; that is it not a given. That they are less equal and less deserving of equal respect, because they lack something vital that the rest of us never had to prove in ourselves.

Essentially, you end up with a war between those inciting fear and concern about what autism “does” to a person, and those trying to defend their humanity in the eyes of society. In such a war, both “sides” tend to over-state their claims, as they try to out-voice the other. Absolutes and universals about autistic people, get stated with little or no grounding, (or mis-stated in the case of misrepresenting an opponent’s view-point). Both sides have something to fight for and something to lose; these are not small philosophical matters of little import or practical relevance. They matter to questions of law, relationships, support services, funding, research, etc.

Besides the actual criteria required for an autism diagnosis, there is a limit to what you can claim about all autistic people (and even then, it is complicated since there are so many varieties and different groupings of symptoms for autism). You can make generalisations, and common observations; “most autistic people do behaviour X or many autistic people have a problem with Y even though it’s not required for a diagnosis.” But all too often people leave out the word “most” or “many” and jump straight to “autistic people.” And as I’ve said, the chosen wording to convey those commonalities – even when they are supposed restatements of elements in the criteria for autism (such as social communication difficulties restated as “robots”) – can have a far wider reaching impact than that intended. (Supposing here that the intention is not to isolate and demonize autistic people.)

It can be hard to connect with some autistic person – to touch them, talk to them, even be in the same room as them (for reasons such an anxiety and violence) – particularly if you have no experience with or knowledge of autism. But to take those challenges and mark them out as failures of their humanity – rather than as reasons to try to better understand the presentation of the problems – is arguably a failure of humanity itself.

These are not easy issues, with easy answers. But a way forward from this point, would seem to be more care with the colourful and emotive language used to describe the problems faced by autistic people, and more care around the use of universal statements that distort the experiences and realities of autism. Fighting to prove humanity, is just one more fight autistic people shouldn’t have to “win” in the first place.

I realise this topic can touch a lot of raw nerves. I don’t mean to insult anyone, or to downplay the challenges faced by autistic people. I am publicly sharing what I’ve observed, and trying to organise my thoughts as I wade through these debates and try to make sense of the disagreements and emotions involved. To that end I openly invite you to share your own views, and in doing so to help me better understand these issues. But please do so calmly and respectfully, thanks!

A Question of Humanity? first appeared at Autism & Oughtisms, and is republished here by permission.

[image via Flicker/Creative Commons (also Simon Owen Design via Autism & Oughtisms)]

Response to A&O’s reply re: “Cornering Slim Shady in the Round Barn” and the definition of Neurodiversity

Mark Stairwalt — Mon, 15 Aug 2011 05:05:04 +0000

Thank you for the kind words, A&O, and the thorough, thoughtful, and gracious reply. It’s a pleasure disagreeing with you.

My view is that neurodiversity is polycentered, that it legitimately has multiple definitions. This is not the same as saying it lacks definition. The point I want to get across is that an insistence on a unified, monocentric definition will inevitably distort and disappear much of what actually makes up the whole. From a standpoint of strategy, I do understand the value of message discipline, of having a message and sticking to it come hell or high water. I would like to have seen this concern of yours more apparent in the essay to which I was responding; re-reading it just now, I don’t find it anywhere.

The world you’re seeking seems to be one where God is in his Heaven and all’s right with the world. To the extent I’m proud, it’s in imagining that I’ve exchanged that worldview (which is certainly the one I was raised to have) for one more polytheistic, one which does not conflate The One with The Good, and which sees legitimacy in The Many. There’s a D. H. Lawrence quote I recently ran across that sums it up at a personal level: “The human being is a most curious creature. He thinks he has got one soul, and he has got dozens.” Many gods, many souls, many perspectives, many definitions. Yes, cats and dogs living together, and more besides.

So I think this is the level at which we are odds. It’s not at the level of neurodiversity, and does it or does it not have or need a definition. It’s at the level of worldview, on the battlefield of The One vs. The Many. Notions about polytheistic psychology have been around for about half a century, neurodiversity as a concept for maybe fifteen years, and much like Billy the Kid and Oscar the Wilde in the mind of one James Luther Dickinson, they “have rented a duplex inside my head.” As Dickinson was proud of his tenants, so I am proud of mine.

I am taken by your emphasis on penumbras, but I would suggest, again, that the model might be not of single, discrete centers with large, deceptively overlapping penumbrae, but of swarms of associated centers, constantly in motion in three dimensions, at times eclipsing one another, at times merging and splitting, and at times breaking off individually or in groups to form or join other swarms, each yes with their own large penumbrae, and all this unfolding over timespans as short as moments and as long as eons. Definitions then need be playful, provisional, and bestowed with a light touch, or they become restrictive, manipulative, and false — or to put it another way, such definitions come to serve the worldview of those who deploy them rather than those they describe.

You may claim that in your response this is exactly what you are trying to prevent, however you are offering no choice but to accept the terms of a monocentric worldview before neurodiversity can even begin to be protected. How is this different from a mob-style protection racket? “Nice little movement you got here. Be a shame if something were to happen to it …”

Consider the examples I offered of other distributed systems which do not lend themselves to easy definition as players on the world stage: the bittorrent protocol, the Tor network, Twitter, LulzSec, and Anonymous. It’s not an accident that they’re all creatures of the internet, as the internet itself is a creation of the autistic cognitive style. The creator of bittorrent for that matter is a diagnosed autistic. Like begets like, and the reason you’re moved to pull your hair out over neurodiversity’s definition is the same reason Authorities condemn cutting off internet and phone service during protests in Cairo while turning around and deigning it necessary and allowable in the San Francisco Bay area.

It’s not neurodiversity’s self-contradiction that’s at issue here, any more than the internet is at fault for playing host to moving swarms of shifting valences — though governments the world over are using this as an excuse for much anti-democratic policy they’d never otherwise be able to implement. What’s at issue is their inability, along with the rest of the monocentric world to come to terms with the presence of distributed networks which are beyond their control, and whose accurate definition calls into question the prevailing worldview.

If as they say Jesus was the Word made flesh and history’s most successful Jew, the Internet is autism made wired, weak central coherence set up on routers and switches, set loose in the world for everyone to hop on and take a ride — and thus perhaps already, the most successful neurological disorder in history (even manic depression has never spawned its own infrastructure). So you see it does come back to the theology that sets our worldviews. The monocentric take gained ascendance by my count in 395 A.D., when the edict came down that Christianity was to be the official state-religion of Rome. “Thou hast conquered, O pale Galilean; the world has grown grey from thy breath …” was (according to Swinburne) the dying cry of the polycentrists. And yet here we are again in this twenty-first century, bringing color back, and riling up the authorities much as Jesus is said to have done back in the day.

So perhaps in your eyes I’ve now moved from proud to grandiose. I do think there are big issues in play here, bigger than my individual pride, and larger than autism and neurodiversity per se.

An earlier version of the above first appeared as a comment at Autism & Oughtism, on Reply to “Cornering Slim Shady in the Round Barn” re the definition of Neurodiversity.

[image via Flickr/Creative Commons]

Reply to “Cornering Slim Shady in the Round Barn” re the definition of Neurodiversity

Autism & Oughtisms — Mon, 15 Aug 2011 05:03:54 +0000

I wrote a post a week ago about the problems with defining “Neurodiversity.” The questions I posed in that piece remain un-answered (and perhaps that is because there are no answers; I will discuss that and its consequences later in this post). I was given to think that I could expect some answers from the particularly articulate and thoughtful Mark Stairwalt, from Shift Journal, which directly and proudly links itself to neurodiversity.

What I got instead, was repetition of the central problem I pointed out in the first place; but this time the problems I’d identified were presented as something to be proud of; that the lack of definition and answers about the neurodiversity movement and neurodiversity itself, is a strength rather than a weakness.

I – perhaps not surprisingly – think this is neither enlightened nor helpful. I regularly encounter these types of arguments with my students, and have had to explain why it is so important to attempt definitions, and why the claim that there is no definition is itself a definition. This might not be obvious, and the importance of it might not be obvious either. So, for the sake of clarity – and with the aim of trying to elicit some answers to my original and serious questions – I shall endeavour to explain.

To say that something – such as neurodiversity – lacks a fixed definition is itself a claim. A disputable, and disputed, claim. It is not a “meta-claim”, by which I mean, a claim that absorbs or explains every other attempt to define neurodiversity. It does not sit above other definitions or attempts at definitions, it sits along-side them. It can be wrong; the question remains: Is it?

It’s like me claiming a bike is a vehicle, and you claim it isn’t, and a third person claims the definitions of bike and vehicles are ever-changing and unfixed (concluding that there is no one definition for “bike” or “vehicle”). The person who makes that last statement is not outside of the contest for definitional clarity, they are part of the contest, just as much asserting their view-point and rightness as the other two.

The search for definitions and clarity is not a fool’s game, made up of people who do not understand the flux of the world and the fuzzy edges of certainty. There are some people who are over-fixated with certainty, to the point that they sacrifice accuracy by ignoring the fuzzy edges and flux. But there are also people at the other extreme (and Mark would seem to be one, and proudly so), who sees truth and reality as always changing, always referential, and never absolute. Both extremes make error. They are doing what I have referred to before as either ignoring or fixating on the penumbra, which is just a fancy word for the fuzzy edges of words, categories and “truths:” If you ignore the edges you make the error of over-simplifying matters to the point of overall inaccuracy. But if you focus too intently on the edges, you make the error of thinking there is no centre. Relevant to our purposes, that would be like saying there is no core definition or purpose of neurodiversity (or the neurodiversity movement) just because there is some disagreement around the edges about its precise application or wording.

For example, we can identify a car when it has four wheels, and is newly off the construction line, but at what point does it stop being a car? When it has no wheels and is rusted by the side of the road? When it has all its parts but it is squashed into a scrap heap cube? And we know a car is a vehicle, but is a bike, is a skateboard? When people say these confusions mean we can’t define “car” or “vehicle” they are over-focusing on the penumbra and ignoring the truth and relevance of the central instances.

(If you’re interested in reading further my thoughts about such issues, I direct you to two previous posts: “Language and Autism: The impact of penumbra and generalized instances, on debates about the existence of, and functioning levels within, ASD” and “Law, Science, Burdens of Proof and Contextual Truth.”)

This is not pretty word play and pointless philosophical musings. This has consequences. Especially for the neurodiversity movement, and indeed any movement or terminology linked to an effort to change behaviour, attitudes and beliefs. If a term becomes attached to a rights movement – like neurodiversity is – then the term can (and has) quickly become short-hand for a particular (more complicated) viewpoint and ideas. As that happens – and if they term is not defined well – it can in turn be easily misrepresented and attacked. That’s called a strawman argument, and it can be particularly effective and powerful in this context:

If a term is redefined by people who want to stop a movement for what ever reasons (they perhaps want to stop the accomplishment of a particular aim of the movement which counters their own aims), they can claim it stands for something it doesn’t, then attack the latter. Let me give you a very clear and common example directly in point. The neurodiversity movement is often linked to efforts to extend acceptance and accommodation of autistic people. But others want autism to be fought and wiped out, not embraced. So it suits their purposes to cast the neurodiversity movement as extreme; as accepting of all mental abnormalities no matter how devastating to the affected individual, and as anti any treatment to lessen the impact of autism itself. If the neurodiversity movement is indeed in favour of these views (and it is not at all clear that they are, as I discussed in my original post), then the attack is valid. But if this is a distortion of the movement and its aims, then the attack is a dangerous and misleading strawman which undercuts the other aims of the movement in the process.

If neurodiversity remains undefined in the face of such challenges, then it cannot fight them off, and its aims and achievements are in danger. So my questions are only pretty and pointless philosophical musings if you don’t care about the real world consequences of changes in actions, attitudes and beliefs. It is precisely because of reality that these philosophical musings matter.

It seems to me that there is a way forward from the mess. The start, is to separate out the definition of the word neurodiversity from the Neurodiversity movement (capital N). The second, is to declare if there is a central, or many, neurodiversity movements. The next would be to be very clear about the aims and beliefs of any particular Neurodiversity movement. Since there are such extremes within what a movement could be aiming for – from general awareness, to full on acceptance, to extensive accommodation, denial of treatment or criminality of treatment – it appears to me that it would be best to be extremely clear about what you’re trying to achieve and why, instead of simply adopting the term “neurodiversity” (which is the general conclusion of my original post). However, it is clear that there are some people and organisations which claim to be the neurodiversity movement, despite the fact that they are in contention with others who claim the same. It is a mess. An unhelpful one. And thereby my call for clarity and pointing out the specific confusions in order to aid the road towards that clarity.

So, while I do genuinely appreciate Mark’s valiant (and beautifully expressed) effort to answer my questions – by effectively saying they didn’t need answers – I remain unconvinced. I think the answers are worth seeking, and I think they matter. If the truth is there are no definitions here – that it is ever-changing flux as he suggests – then the term “neurodiversity” loses much of its force for change (though not all of it), and remains an easy target for straw-man attacks aiming to undercut even its most widely-acceptable and agreeable aims.

If the aims and beliefs of neurodiversity matter, then defining neurodiversity (and Neurodiversity) also matters.

Reply to “Cornering Slim Shady in the Round Barn” re the definition of Neurodiversity first appeared at Autism & Oughtisms, and is republished here by permission.

[image via Flickr/Creative Commons]

Cornering Slim Shady in the Round Barn: On “Pinning Down” Neurodiversity

Mark Stairwalt — Fri, 12 Aug 2011 09:12:16 +0000

Neurodiversity. In contrast to the proprietor of Autism & Oughtisms [A&O] who reports first hearing the word less than a year ago, it’s been a little over a decade for me. It merited one sentence in the writeup I’ve posted describing the paltry extent of congenial thought my then wife-to-be and I turned up from a year or so of wearing out the Netscape browser and the Altavista search engine: “We were aware, for instance, that the term neurodiversity had been coined, but this seemed a distant and isolated fact.” To think that just these few years later it’s a word — a word — that can inspire such an impassioned rant as that turned in recently at Autism & Oughtisms is remarkable. Not remarkable enough, however, to wait around for. For the reasons described, we pretty much turned our backs on the autism world and got about the business of raising the kids, one diagnosed, and one we’ve recently learned has identified as autistic all along — just matter-of-factly, without angst, fear, or trepidation. That in itself, to me, justifies the decision to turn our backs.

As you see then, I’m late to the party. No veteran of the autism wars me. And while a tiny, shining handful of those veterans have allied themselves with this site, we are thriving in spite of being roundly ignored by nearly all the disability bloggers who fought to bring the word neurodiversity to prominence — I have the unanswered emails to prove it. So to find myself presiding — and not by my own design — over a site which might seem to have been directly addressed by A&O regarding this word to which Shift has hitched its SEO strategy, well, it’s amusing to me if not to others. At the same time though, it is somewhat emblematic of the error I think A&O is making about the nature of what’s being discussed.

I’m struck by the way both in the essay itself and in the comments we exchanged on it A&O seems determined to get at the heart of neurodiversity, to expose precisely what its “top value” is, to stare it down until it reveals its irreducible, singular center — and if not, to declare it illegitimate for lacking just such a center. It has me in mind of something I’ve written about styles of consciousness:

But yes, when you are able to comfortably entertain multiple, competing and contradictory notions of truth or reality, when you can face ambiguity without needing to do anything about it, your overall style of consciousness might be said to be polytheistic. When you behave as if there are not all that many right, healthy, or justifiable ways to be human, when you see differences as deviations from an ideal rather than variations on multiple ideals, when you discount gray tones for black and white, when you focus on the literal rather than the metaphorical, your overall style of consciousness might be said to be monotheistic—yea, though you are still tossed around and toyed with by various lesser gods, just like the rest of us.

I know A&O would prefer that the arguments presented be grappled with, but if we step back a frame of reference or two, I think what can be seen is that much of the controversy over neurodiversity takes place against a background of prior assumptions — or all-encompassing styles of consciousness — which in turn tweak our views on the nature of the world. When The One clashes with The Many there will of course be arguments — good and bad — to be chewed over, but in the long term the only decisions that count are the ones made by successive generations, by newcomers whether they are just coming of age or just coming to learn about autism. As I’ve said at some length already, “… it’s more about winning the hearts and minds of those who aren’t even paying attention yet.”

In the short term, that of a generation or two, I think that battle is won or lost through example. (The battle for gay marriage for instance isn’t being won by good arguments so much as by young people looking with fresh eyes upon increasingly available examples of out, loving gay couples — young people who care not a whit about being seen “to take this holier-than-thou line” or about whether they’ve achieved sufficient objectivity to choose “the correct voice.”) And in the long term, who knows, it may well — as Andrew Lehman suggests — have to do with socioeconomic shifts in the sorts of parents who are able to get together, the sorts of offspring they engender, and the kinds of examples to which those succeeding generations in turn respond. Either way, while I can bear witness to the drama of A&O feeling caught between the two — and it doesn’t look like fun — the arguments to me are simply the byproducts of the friction produced by two styles of consciousness at odds with one another.

This friction is also prominently on display right now as Central Authorities the world over struggle to come to terms with the distributed nature of social software and peer-to-peer networks. Time and again, from the record companies to governments to private security contractors, the nature of what they’ve suddenly been forced to focus on eludes them. Where, A&O, is the heart of the bittorrent community, or of the Tor network? What pray tell is the “top value” of Twitter? Serve up the head of LulzSec on a platter, “pin down” the idea behind Anonymous, and you’ll be welcome in any police barracks in any country you please. Good luck. As those last two groups have been reminding us lately, “You cannot arrest an idea.” There is no Real Slim Shady, there is no secret cabal of lizard-people running the planet, and there is no true beating heart of neurodiversity to be placed on the table and examined under a magnifying glass.

You’re shadowboxing, from where I stand, A&O, while complaining about the lack of solid targets, and the carpal tunnel pain “caused” by their absence.

As that physician in the old joke advises the patient who complains, “Doc, it hurts when I move my arm like this” …

Don’t do that.

I do love a passionate, articulate rant, probably more so than the next guy, and I could hardly ignore a post which came days after your first appearance here, and which seemed to be missing only the phrase, “We’re lookin’ at you, Shift Journal” (not likely true, but self-dramatization seems to be the order of the day). I salute your willingness to struggle with ideas, and I hope you’ll allow me to repost work of yours in the future. But I’m not here to win your heart or mind, or free you from whatever circular dilemma you feel yourself to be in. So by all means, “hop off the bandwagon and openly state your belief.” No one’s drowning you out; your thoughts are not even in the minority overall. No one is claiming that acceptance will “eradicate the objective problems faced by many autistic people.” No one owes you a “a clear non-self-contradictory definition of neurodiversity.”

And easy as this is to say with my relatively comfortable life and family, no one, as Steve Silberman recently made poignantly clear, is owed a life without suffering.

There’s more to be said here about the coerciveness inherent in the notion of a cure, and the false equivalency that’s set up whenever one proposes that the alternatives can be equitably “balanced.” Rather than try to outdo Rachel Cohen-Rottenberg, I’ll close with three of her posts on this theme:

Autism, Disability, and the Obligation to Get Well, Part One

Autism, Disability, and the Obligation to Get Well, Part Two

Neurodiversity, Self-Determination, and the Magic Pill

[image: Charles Dana Gibson]

related: Emergence

Acceptance of Diversity within Neurodiversity (?)

Autism & Oughtisms — Fri, 12 Aug 2011 05:18:25 +0000

Neurodiversity. The better part of a year since I first heard the word, and I still can’t tell you what it means. It’s not for lack of trying: I’ve been reading posts by people who label themselves as part of the movement; I’ve read opinions by those from outside trying to define or critique the movement; I’ve put plenty of my own time into trying to figure out an internally-consistent definition of it too.

In one breath, it speaks to an open-minded attitude and acceptance of the various lives we choose to live (particularly of the value of different lives lived by disabled people). But in the next breath it excludes and invalidates any divergent opinions from the very people it purports to represent. For example, if an autistic individual should choose to speak out about the objective hardships of their condition and how they would prefer to live without autism, their opinions are likely to be attacked, ridiculed or dismissed as distorted, by the very people arguing that diversity is a good thing.

But of course, not just any diversity; their diversity. Because neurodiversity is ironically often about seeing the world in one way; their way. It’s very much like those who argue that the top value in this world is tolerance, and then attack people who are intolerant; tolerating anything as long as it’s not intolerance. Letting anyone speak their minds unless their minds speak something different. To place tolerance – or in turn, diversity – as your top value, from which to attack other people, sets you up for a fast road to confusion and eventual contradiction. There are higher values than acceptance for the sake of acceptance.

It needs to be “we want diversity / tolerance / acceptance because…”. Because it leads to happier or fuller lives. Because it allows more personal / economic freedom. Etc. If the diversity being exalted actually ends up in more misery and objectively worse off lives – lives of restricted movement and interactions when the person dearly desires such things – then something has surely gone very wrong.

There is an important further potential contradiction within the movement, that appears overlooked: If you see neurodiversity as a good in itself, then why is it inherently bad for someone to choose – if they indeed have that choice – to seek another neuro-way-of-being? To clarify, if someone with autism, would rather and actively chooses to go to another point on the rich and diverse neuro-diversity of mankind, then why is that something to be attacked? How is choosing to be less autistic by seeking treatment and a cure, worse than choosing to be more autistic, by completely giving in to autistic ways-of-being? The obvious reply is going to be one of authenticity or truth-to-self; that being autistic is a particular way of being that should not be fought but embraced and accepted.

But that presupposes truths that the core of neurodiversity would seem to deny: That human beings can be always neatly pigeon-holed into one category or another. That we’re not all on a spectrum (in the normal usage of the term) of existence where the lines of difference and disability are arbitrary and un-necessary. If it is true that the line between one type of mind and the next is arbitrarily and culturally (though those are not the same thing) defined, then who is to decree that someone can not of their own volition choose to slip towards one end or the other?

Often the neurodiversity movement will not be this intense though; some (not all) accept that there is some defined grouping called “autism” (despite its historically and ever shifting parameters), which means a person is pre-determined to function, and perceive the world, in a particular way; and that denying that instinctual functioning and perception is somehow inauthentic, wrong, or ill-informed. But to take this holier-than-thou line denies the experiences and perceptions of many others who have the same condition; supposedly the same mind-iness. If there can be – is – this division, within a defined population group, then who gets to choose the correct voice? Who speaks the truth over the other’s truth..?

If one wants to speak beyond personal truths, then it seems the answer has to lie in science and objective evidence. If one side is claiming acceptance will remove all obstacles that autistic people face, and the other is claiming acceptance will still leave objective and severe challenges in those same lives, either someone is wrong, or they are both partially right. I personally see partial and co-existing truths here: Acceptance would help a lot, but it will not eradicate the objective problems faced by many autistic people; sometimes life-threatening problems.

However, what is the point of all that discussion, if we can’t pin down neurodiversity? Does it mean acceptance of an individual’s choice to live exactly as they are; autistic or otherwise? Does it means broadening the perspectives and acceptance of others; to see disability and difference as natural variation when it doesn’t objectively hurt anyone? Does it mean accommodation and encouragement of all and any mental diversity? It cannot be all of those things, but depending on who is speaking, it is. So – it would seem – there is diversity within neurodiversity, and some of that diversity explicitly attacks diversity.

You may be noticing that subtle shift, if you didn’t pick up on it earlier; as I move between “diversity” re neuro, and diversity re beliefs and values. It’s not fatal to what I’m saying – it depends as always on what neurodiversity even means – but if it disturbs you and you dig deeper, you’ll find it doesn’t disappear quite so easily as that: You may be tempted to reply, that neurodiversity welcomes neurodiversity, just not diversity of beliefs about neurodiversity; that neurodiversity is valuing and acceptance of neurodiversity. Whereby the “correct” attitude and belief system is supposedly built into the word itself. The word is a value judgment. So the disagreement – the seeming lack of diversity / tolerance / acceptance – is at the level of the value placed on neuro-diversity.

Claiming then, an authority on perception; an access to truth higher than those who don’t place the same value on it. But on what grounds? Science? Science will show you things but not tell you how to value them. It may reveal the slippery slopes between one mental state and the “next,” it may reveal an unrecognised history of a condition, but it will still show you the differences and the existence of the condition; the closeness of L to M does not deny the existence of A and Z. (I have written before about the common folly of thinking penumbras ruin all meaningful categorization.)

Maybe the grounds of cultural and anthropological awareness; difference is treated differently in different societies. But do they still recognise difference? Yes, even if only to show that someone of a certain ability and temperament is better suited to a particular role within the community than another. Is there a way to perhaps stand outside of culture and make an objective statement about what you’ve observed? If you fully appreciate the complexities and deeply developmentally-ingrained ways in which we perceive the world, you’re going to have to be very suspicious of your own claims to then be able to transcend what you’re observing; to think you have the correct way to make sense of the observed variation.

Which is all to say that sooner or later, as you travel the neurodiversity road, you’ll have to admit that you’ve added in a value judgment that claims an objectivity that supposedly gives you the right to drown out and deny the voices of those choosing a different perception of neurodiversity. It is that value judgement – that neurodiversity is itself a good thing, an intrinsically and always good thing, and above other competing values of what is good – that remains a tripping stone even if one chooses to argue that diversity in a broader sense is not at the heart of the movement (and I have already outlined that that’s not self-evidently the case).

So where does this leave us?

Mostly where we started.

Nowhere.

Because without a clear non-self-contradictory definition of neurodiversity, it’s hard to either praise or attack it; to draw conclusions about its value or correctness. Better to openly state one’s belief, than hop on the neurodiversity band-wagon, because that wagon is over-loaded and the wheels look wobbly from where I sit.

I used to think I knew what neurodiversity meant, and I hated it. Then I thought it meant something else and I loved it. Then I thought about it further and wrote a post called “Acceptance of Diversity within Neurodiversity.”

(And if you can appreciate the circuitousness of that link, then you’re starting to get my point.)

Acceptance of Diversity within Neurodiversity (?) first appeared at Autism & Oughtisms, and is republished here by permission.

[image via Flicker/Creative Commons]

related: Autism In The Mirror

On Literal Thinking

Rachel Cohen-Rottenberg — Fri, 08 Jul 2011 05:00:48 +0000

I’m always very interested in the observations of parents regarding the literal nature of their autistic children’s thinking. I’ve read many tales of children who take idiomatic expressions literally, with some very humorous outcomes.

Consider, for example, the experience of Fiona, who blogs at Wonderfully Wired and writes this post about her children’s literal interpretations. In one scenario, she talks about her daughter Ella:

“I asked her to help me clear the breakfast bowls off the table and because the dishwasher still needed unpacking from the night before, I asked her to just “toss” the dirty bowls in the sink and I would deal with them later.

So she did.

From almost a metre away.

And they ALL broke.

She couldn’t understand what the problem was, I had said to toss them!”

Now, I don’t know about you, but I think that the whole scene is incredibly cute and completely hilarious. (Of course, I didn’t have to clean up the broken dishes…)

The thing is, though, that I don’t remember ever taking idioms literally as a child. I had other forms of literal thinking. For instance, I tended to take people at their word. When people spoke, I’d see the word pictures in my mind, and the words became living, breathing entities. It took me a while to figure out that I had to wait for follow-through, and that people might not always mean exactly what they say.

I also remember an occasion in which I broke down in tears of disappointment after my father used a word in a different way than he’d ever used it before. My parents always used to refer to cupcakes and other baked goods as “goodies.” Then, one day, when I was about five years old, my father brought a box home and said, “Look at all the goodies I brought for you!”

I had images in my mind of chocolate cupcakes with multicolored sprinkles on top. My mouth was watering.

Imagine my surprise to find toys instead! Now, you’d think I’d have been thrilled, but I’m sorry to say that I broke down and cried inconsolably. My parents, who were not the most sensitive people on the planet, just laughed and told me that I was being ridiculous. They didn’t realize, of course, that they had switched the meaning on me, and that the picture in my mind was so vivid — and so scrumptious! — that I felt as though I’d been had.

But even as a child, I loved metaphor and wordplay. They gave me great delight. And I know other autists who do, too. So I began to wonder whether understanding wordplay stands in opposition to literal thinking.

I’ve discovered that, for me, it doesn’t. In my mind, the literal meaning and the figurative meaning work together. In fact, it’s the combination of the two that makes wordplay so much fun.

Take, for example, the expression, “It’s raining cats and dogs.” When I asked my non-autistic husband what he saw in his mind when he heard this expression, he said, “Nothing. I just experience it as a metaphor for heavy rain.”

In contrast, when I hear the expression “It’s raining cats and dogs,” I literally see the word “cats” and the word “dogs” falling down like rain. I also see the literal rain — in fact, the words are falling with the rain and splashing into puddles — but I don’t see visual images of cats and dogs.

The fact that I think in text may account for why I understand the wordplay. Words are symbols, so I’ve already made a partial translation toward the metaphor before I’ve begun. The words falling like rain are what make the wordplay so enjoyable, because my mind is literally playing with the words. I’ve been seeing words in this way for as long as I can remember.

However, despite my understanding of metaphor, I sometimes find myself becoming impatient when people are speaking and using sarcasm, irony, and any humor that involves a meaning the opposite of what is being said. It’s not that I miss the double meaning. I know it’s there. The problem is that I have to work so hard just to keep up with the literal meanings of the words that I sometimes don’t have the energy to switch cognitive circuits and address the figurative meanings. And because I see word pictures in my mind when people speak, and I have to read them in my mind and then respond, my processing is delayed. I therefore find it difficult to switch circuits into the figurative meaning and keep up with the rest of the conversation, too.

It’s as though I’m always working on two levels. The nature of my auditory processing means that I have to work very hard at simply parsing the literal meaning of speech, and that I’m working overtime just to keep up. And my love of wordplay means that I intuitively understand when the literal meaning is not what is meant.

So, when my husband lovingly teases me at dinner by saying something the opposite of what he really means, it can feel very tiring. I understand that he’s being loving. I really do. It’s just that I have to listen so intently that I’d prefer he just come out and tell me what he means.

But if he writes things with irony, with sarcasm, with teasing, with double meanings?

I love it. I thrive on it. It’s like eating chocolate cupcakes with multicolored sprinkles.

So, I wonder how much of the literal thinking of autistic people comes from difficulties with auditory processing, rather than a failure to understand metaphor. For people who think in visual pictures (seeing actual cats and dogs falling, for example), is the problem that they don’t understand the metaphor? Or is the problem that they have to work so hard to keep up with speech that it’s difficult to switch between the literal words, the pictures they call up, and the intended meaning?

I’d love to hear what you think.

Rachel Cohen-Rottenberg blogs at Journeys with Autism.

On Literal Thinking appears here by permission.

Rachel Cohen-Rottenberg’s Memoir is The Uncharted Path.

Cohabiting with Autism

Guest — Thu, 19 May 2011 06:44:58 +0000

“Moms living with autism share their stories!” the headline proclaims. I know what it means. I know what it always means. And I know it will provoke some degree of wrath in me, but I click it anyway, because I’m testing my assumption, and because if I don’t keep up my frustration level, I’ll have nothing to blog about.

As usual, “moms living with autism” means “moms of autistic children.” “Autism families” means “families with autistic children.” “Autistic parents” means “parents of autistic children.” “The autism community” means “the parents-of-autistic-children community.” This is problematic on a couple of levels. First, obviously, because it excludes actual autistic people from consideration. The only reason people can say “autistic parents” in the confident understanding that others will know what they mean is because it is near-universally taken for granted that an autistic person cannot be a parent. The exclusion of autistic people from “the autism community” presumes that autistic people cannot be adults or agents of their own lives.

Secondly, the “living with autism” phrasing not only denies autistic people as the subject, it denies them even the status of object. It was the pro-cure movement, after all, which convinced writers and the politically correct that adjectives are insults, but phrases and clauses are sensitive terminology. The straightforward “autistic people” was banished in favor of the clunky “people with autism” or “people who have autism.” It became very important to emphasize that autism was not the autistic person’s primary or sole defining quality; it was, if anything, merely an afterthought. Certainly it was something that could, and should, be removed without affecting one’s fundamental personhood.

So if the purpose of relegating autism to prepositional phrase is to place the person first, why is it so common to drop the person from the sentence altogether? When “moms living with children with autism” is shortened to “moms living with autism,” note who gets dropped. The autistic person, instead of being elevated to a person who happens to have autism, is lowered to merely a personification of an abstract noun. An abstract noun which, according to Autism Speaks (not “People with Autism Speak”) is a child-stealing monster.

This is consistent with the portrayal of autistic people as vacant, their bodies merely shells in which the demon Autism resides. Autism is ugly, we are told, and a kidnapper, and legitimate grounds for murder. Clearly, we can see that, rather than putting the person first, as the convention purports to do, using “autism” exclusively as an abstract noun eliminates the autistic person from the sentence altogether, rendered not only invisible but nonexistent, our real selves “stolen” or “kidnapped” by this demonic abstraction.

I’m not saying anything new here, of course. I never am. All I can do is point out that this is the sort of thing we can easily challenge: autism is not a thing unto itself. One cannot have a jar of autism. The abstract noun exists only in the context of the people it describes. “Autism” can modify us as adjective or phrase or clause, but we are the integral part of the sentence.

adkyriolexy blogs at Kyriolexy.

Cohabiting with Autism appears here by permission.

[image via Flickr/Creative Commons]

The Listener Test

Zygmunt — Mon, 09 May 2011 18:56:48 +0000

“At work today, I was socializing with two extroverted co-workers. I wasn’t completely comfortable, but I was able to get a few words in every once in a while. Then, a third extrovert came up, and I found that whenever I wanted to say something one of the other girls beat me to it by one or two seconds. I started feeling extremely awkward, because I was just standing there and not contributing to the conversation.”

This forum poster described a phenomenon I’ve experienced very frequently. For one whom social interaction is competition for attention, one who enters the arena with other goals cannot possibly hope to compete. Those who talk at the competitive level are so saturated by Loud attention getting tactics that they don’t even notice someone who’s trying to talk normally any more. They’ve long forgotten that the main purpose of conversation is to convey meaningful information and have constructive discussions. The rat race has consumed them utterly.

Frustrated with being ignored, I resorted to a test while growing up to see if someone was worth my time. I would say something in a measured tone of voice at indoor volume. I would then monitor the response. Most of the time the eyes of the extrovert in question would remain glazed over with incomprehension, if indeed they were even aware of that I had been talking. They would quickly flit onto something they thought more stimulating. Appallingly few people passed this test and I would feel more alone than ever. But this test ultimately did help me find people who didn’t see people as advertising, who wanted more than shallow stimulation from conversation, and who wanted to be my allies, not my competitors.

The truth I have found is that most extroverts live amongst so much noise pollution that they quite simply can’t hear the spoken word until one keeps a sentence to no more than a few words, fires them out quickly, and puts great emphasis on all the stressed syllables. It seemed to me that to get a Loud person’s attention, I’d have to address them in much the same way as I’d address a pet dog. Such a realization was very discouraging indeed!

Zygmunt blogs at Kingdom of Introversion (and elsewhere).

The Listener Test appears here by permission.

[image via Flickr/Creative Commons]

When Is a Disability Not a Disability? Autism Speaks Has the Answer

Guest — Fri, 29 Apr 2011 05:00:36 +0000

When is a disability not a disability? When it is a “disorder.” Geri Dawson of Autism Speaks made that clear yesterday in her report out from the Research and Innovation session at the White House autism event. She noted that her session had featured a lively conversation about the terms “disability” and “disorder,” and then weighed in on the side of “disorder.” She said that autism is a disorder, and went on to state that unless we think of autism as a disorder we will never think of it as a disability. Although that does not seem to make any sense at all, it’s actually quite astute. It’s not just “doublespeak,” either. It is critical to understand why it’s important to Dawson and Autism Speaks (and to those researchers who want to prevent autism). Dawson did bring up prevention more than once in her remarks.

Why quibble about two words, both of which begin with “D”?

When a person has a disability that person is still a person. That person with a disability has a body, and a mind. That person with a disability has needs, concerns, desires, a personal history, a context of family, friends, and community relations. A person who has a disability has all the legal and civil rights of personhood (or should). That person has (or should have) the right to make decisions (sometimes with assistance, sometimes not) about what they want for their life, including, at least during adulthood, the right to accept or refuse treatments, make choices about where to go and who to spend time with, and when. That person with a disability has the right to be treated with respect, to have their deepest dreams and desires taken seriously, even when the person has what is often called a “more severe disability.” There are documents such as the Developmental Disabilities Act (the DD Act) that presume that a person with a developmental disability has the right to self-determination, inclusion in the community, the right to care and treatment that maximizes the potential of that person with a disability. The DD Act specifies that no person with a disability can be subject to a greater risk of harm than to any other person in the general population. The DD Act offers protections via the Protection and Advocacy (P&A) system. Various other pieces of disability legislation protect people with disabilities. Legislation also protects, or attempts to protect, children with disabilities. Although they have fewer choices in terms of what treatments and interventions they might want to accept or not accept, children with disabilities are protected by law.

A disorder is not a person. A disorder is a collection of “symptoms” or “undesirable” conditions or traits. A disorder doesn’t have a body. A disorder doesn’t have a mind of its own. A disorder can’t be a child, perhaps a child in need of protection. As such, a disorder does not have any rights under the DD Act or any other act. Only people do. A disorder can be “combatted,” “cured,” “prevented,” and “eradicated” in any manner that researchers and others see fit. Autism Speaks has a habit of depersonalizing autism (remember the infamous “I… Am… Autism…” video with the creepy disembodied voice?) in order to justify eradication and prevention.

There is one problem with all this, and is the reason I think Geri Dawson’s comments are concerning and also very telling of Autism Speaks’ continued focus in eradicating autism. Those disembodied disorders? They are actually part and parcel of people, people with bodies, with brains and minds, people with disabilities. Every “cure,” “treatment,” and other intervention is not actually carried out against a disorder. It is carried out on and sometimes in, the bodies of real people, including children. Disability is embodied. It cannot be separated from the person who has it. Every attempt to eradicate a disorder has to be balanced against the fact that the disorder is carried within a person. Not so disembodied after all, creepy voices or tragic rhetoric notwithstanding.

Dawson made her comments during the report-out from each of the four breakout session groups. In the Education and Employment group which I attended, we had a productive and encouraging meeting, with much thoughtful and sensitive input from advocates and self-advocates. I heard similar comments from participants in the other sessions on Community-Based Services and Public Health and Healthcare. People were putting their heads together- exploring creative solutions, collaborating, with Administration officials asking thoughtful questions and being responsive.

When Dawson got up to speak, the effect was a big let-down. Here we were all moving ahead, getting ideas, making plans. The “disorder” comment was like a return to the past, a past where the only option was “cure the disorder so that society won’t be burdened with these people.” Dawson’s pronouncement was the only really discordant and almost irrelevant note in the proceedings, most of which seemed to be focused on the things that really matter – services, supports, creating more infrastructure for those services and supports, meeting people’s needs in terms of education, health care, employment. I am hoping that Administration officials, at least in some departments, will move ahead with forward-thinking programs and initiatives that will really help people on the autism spectrum, our families, friends, and communities. I hope less focus will be put on finding causes and cures and more on helping people to live to their fullest potential.

Thank you to the Obama Administration for hosting the event and to the Administration officials who listened and asked provocative and important questions.

Paula C. Durbin-Westby blogs at the eponymous Autistic Advocacy Blog.

When Is a Disability Not a Disability? Autism Speaks Has the Answer appears here with her permission.

[image via Flickr/Creative Commons; click on image for explanation]

Action Words

Gwen McKay — Wed, 09 Feb 2011 15:42:29 +0000

Among the many ideas that have been put forward in recent years to explain an apparent increase in the autistic population is the concept of assortative mating. According to this hypothesis, today’s society gives people with autistic traits much more opportunity to pair up. Universities, tech companies, and other geek-friendly environments provide the happy hunting grounds for those who might in previous years have been unable to find compatible mates. These couples then pass on their autistic characteristics to the next generation.

This explanation fits well with Andrew Lehman’s perspective on autism as determined largely by sexual selection and hormonal influences. As he has noted, there are many clues that enable those with autistic traits to recognize one another, which he compares to “gaydar.” These clues are not necessarily limited to the behaviors most commonly associated with autism; on the contrary, they may include very subtle similarities in word choices and speech patterns, and some of them may take place almost entirely on a subconscious level.

A research study recently published by the Association for Psychological Science indicates that people see themselves as more or less compatible with others based on language styles, such as how they use pronouns. This study caught my interest because I’d had a conversation with Mark Stairwalt on this topic last year, after I noticed that we both had a tendency to omit leading pronouns in casual conversations. I mentioned that this seemed consistent with the autistic primary-process style of thinking, discussed by Mark here and by Andrew here, in which—as noted by Gregory Bateson— there is more focus on relationships and their patterns than on people and things. Starting a sentence with a verb and no subject indicates a pattern of thought in which the action itself is seen as more significant than specifying who did or should do it.

As I discussed in my post last week, there is research to support a conclusion that autistics tend to focus more on outcome than intention. I wonder if this difference might go even farther, harkening back to an ancient era when social structures were much less complicated than they are today. Perhaps it would be fair to say that the autistic style of thinking is one that focuses on the action more than on the identity of the particular member of the tribe who happens to be performing it.

Andrew has noted that many autistics have a strong creative focus and enjoy getting attention for their work, which he compares to narcissism. That’s a term derived from the classical myth of Narcissus, who thought himself so beautiful that he fell in love with his own reflection. In contrast, autistics tend not to concern themselves overmuch with the details of their physical appearance or to seek attention by other superficial means, such as wearing fashionable clothes or driving a popular car. The focus, once again, stays on the action being performed. To the extent that a comparison to the Narcissus myth reasonably can be made, it might be better described as falling in love with one’s work, not with one’s image.

Perhaps, as the study on language styles indicates, we may be relying on subtle clues such as pronoun use to identify others who have a similar focus on action and outcome—to find other members of the tribe.

Just Be Yourself

Stephanie Allen Crist — Tue, 11 Jan 2011 06:00:35 +0000

I remember hearing those words a lot as a child. “Just be yourself.” I would hear those words when we moved and I had to make new friends. I heard those words again when I started taking interest in boys that went beyond simple playmates. I heard those words yet again when I wanted to learn the “right” way to write. “Just be yourself.”

When it comes to raising my own kids, it seems our society finds those words to be out of place. At Planet Outreach-ASD, Jean wrote:

It shouldn’t even occur to me to want to change his behaviour just because it makes me uncomfortable, and because I want him to be more like other kids.

It’s actually deeply disrespectful of who he is.

I agree with Jean that it’s deeply disrespectful to ask our children with autism to change simply to conform to society’s expectations. Yet that is the overwhelming message: change, conform, catch up.

Further reflection makes me wonder: Is there anyone who is allowed to just be themselves?

I know as a child, there were many ways I was forced to conform. There were other ways I refused to conform. There were still other ways I could not conform. This hasn’t changed since I’ve become an adult. And it’s more than my own version of atypicality.

My step-son, who is a typically developing teen, faces enormous pressure to conform. He expects criticism, yet he still doesn’t understand that criticism. He wants to rebel against standards, but is bothered when people look at him more than they look at others.

“Just be yourself.” It’s something we say, but how often do we really mean it? How many people really, truly extend that courtesy to others?

If we really believed in that trite little saying, would so many in our society see autism as something so dangerous? If we, as a society, believed in allowing people to just be themselves, would we fear the diversity that abounds?

Just by yourself. And let others do the same.

How much would change for the better if we all did?

Stephanie Allen Crist blogs at Embracing Chaos.

Just Be Yourself appears here by permission.

[image and pendant: Gina Cuff. Etsy shop here.]

Going Back to the Place You Lived as a Kid for Pictures to Remember

Guest — Mon, 08 Nov 2010 06:10:18 +0000

This “short” was retrieved from the personal journal of a reader who wishes to remain anonymous, on the occasion of his reading Gwen McKay’s The Paradox of Changing the World with Words. Shot through with a jumpy, hyper sensibility, its rapid-fire free-association gives way only in the final sentence to a calm, contemplative memory of that brief handful of years remembered better by some than by others, those years when language has not yet come between ourselves and our world.

“The message for me,” writes the author, “both in this short and in [Gwen’s] essay is how the concept of language itself is a huge limitation and barrier for our perceptions and experiences of life and that autism is forcing us to reconsider this aspect of our reality. The short tries to put into words the aspect of experience we take for granted and don’t talk about but which is a more natural form of perception for some with autism.”

The house was stained an ocher red color that you couldn’t imagine someone consciously deciding to paint it. The steps are still there, though worn and in obvious need of repair and you think this about the city too. And the yard. It is so small! What the hell happened to the yard you think? Did someone shrink it and then bring the fence boundaries and trees in so that it looked like some trick of photography, photo manipulation or digital reconstruction?

The dog, maybe a Schnauzer, is barking at you as if it had never seen you and while this is true you think that somehow it should recognize your aura and how your aura is somehow connected with the aura of the house, the yard, the steps and maybe even the dog. But the dog doesn’t think this. She just barks. Or he. You ponder why dogs are sexually more ambiguous in their femininity than cats and scratch your head as the dog lopes back around the house, ignoring you as you move closer to the fence, your hand touching the steel, which was the same as it had been twenty years ago when you where nineteen and your father and mother and all the things associated with them and their lives at that point in history were collected in this one specific point in space-time and it was not liminal.

You feel claustrophobic and the sun peers down at you, a dull umber yellow, more like burnt toast than gas exploding in nuclear fusion reactions that don’t annihilate anything but instead make your skin feel balmy and warm here in the midwest in June, a place like Chicago or Milwaukee where the summers are usually mild and the winters are a real bitch so you buy mittens to fight off the cold.

The house stares at you as if asking you what it is that you want from it and could you also please explain why you came back after twenty odd years in which you had faded from its memory like the trees which once made up its boards. You wonder if maybe the house is conscious and that somehow it is communicating with you using not words but symbols and how maybe the magnetic field of the sun along with the solar winds and flares and ionic particles are not any of that at all but just some other part of the house and you and the sun and you and you begin to think that this line of thinking might make you crazy and you suddenly feel relieved that you can apply that word to it, crazy, and how by doing so it suddenly isn’t so scary and is no longer part of you but something else over there like placing a fence between you and it in your mind.

You think the house looks like a head, like your head maybe and that if so, then you and your family and the peoples you didn’t know whom also slept there, fought there and considered it somehow their own, were really more like memories to the house. You tried to imagine what you would do if that bizarre idea you had in fifth grade of a horse crossed with an elephant came walking up to you and introduced itself and expected you to somehow be okay with this. Of course, you realize that the house wouldn’t describe such an event with words but would instead accomplish it through other means that seemed vaguely like things people either believed in or didn’t and were willing to argue their point knowing they might be wrong and there was no proof either way.

You recalled vague memories of some weird Mayan apocalypse you saw on tv, maybe a Nostradamus special, or were told about by a friend or something in which they believed that objects like plants, houses and spoons were going to turn on people and punish them or thank them for how they were treated. The Mayans were an irrational, aboriginal people though and you knew how those types believed in weird stuff from your anthropology classes in college and you felt certain that your house would not visit you someday to extract penalty for the window you broke at thirteen, besides it was an accident anyway and if the house could do those things the weird Mayans believed, surely it would remember that it was an accident that it happened and that surely conscious, non-human entities would also allow for mistakes which happened that were an accident and unintended like the way rocks fell from mountains and caused avalanches.

You go back to your car, metal and plastic, and you sit and try to sense what it is you feel here in this place occupied by your body and head, memories, nostalgia, lost time, caught time, things out of joint. You think about Hamlet and how you hated that fucking play and then you crack a cigarette which you think you want to be at one with in a cosmic sense and put it to your mouth while lighting a fire at the end and allowing the flames to change its state of matter to something like the wind which you can inhale into yourself like water. You turn the car on, the engine coughing like you feel the urge to do yourself but decide not to do, and then you drive down the street and look back at the house noticing how the windows in the front look curiously like eyes and how you had forgotten that you remembered thinking the same thing when you were four or five or at some age before you counted or learned how to talk.

[image: tinyfroglet, via flickr]

Speak Up on November 1st!

Rachel Cohen-Rottenberg — Fri, 29 Oct 2010 17:00:53 +0000

On November 1st, people all over the world are being asked to stay off social networking sites as part of a Communication Shutdown. This initiative is the brainchild of an Australian organization called the AEIOU Foundation for Children with Autism. To join, you make a donation to receive a CHAPP (charity app). The CHAPP gives you a shutdown badge to wear online and adds your picture to a whole collection of photographs of other supporters, including celebrities. (Wow! Celebrities!) The donation you make goes to an “autism charity” in your home country.

In addition to raising money, the aim of the Communication Shutdown is to help people understand what it’s like to be autistic. According to the website devoted to the initiative:

Social communication is one of the biggest challenges for people with autism. By choosing to shutdown your social networks for one day, you will have some idea of what it’s like for people with autism who face this challenge every day.

Rachael Harris, a counsellor and supporter, who herself is on the autism spectrum, put it best when she said, “Electing to shutdown social communication mirrors autistic silence. But it also draws attention to the isolation and intense loneliness experienced by those who are impeded from connecting socially with others. The CHAPP is a powerful way to create a sense of empathy towards those on the autism spectrum.”

Whenever I hear ideas like these, I’m reminded of those Highlights magazine games where you look at a picture and start scanning for all the things that don’t belong there. Where to begin?

First of all, what is the AEIOU Foundation for Children with Autism? It’s an organization devoted to early intervention strategies for autistic children between two-and-a-half and six years of age. Looking at the website, I can’t find any specific information about what those early intervention strategies might be. If we’re talking ABA, I’m outta here.

Despite the lack of specificity about therapeutic strategies, I have no trouble finding information on the website about the people who run the organization. And guess what? Not a single one of them is autistic. Not one. Running an autism organization without any actual autistic people in it is like running a synagogue without any actual Jewish people in it. Of course, if they had autistic people running the place, they might not be raising money for such organizations as the National Autism Association, whose motto is “Think Autism. Think Cure.”

Which leads me to my next question: If “electing to shutdown social communication mirrors autistic silence,” what is the source of that silence? Is it that some autistic people aren’t verbal? If so, our nonverbal fellow autists are certainly communicating in other ways: through art, through writing, through nonverbal behavior. I thought non-autistics are supposed to be stellar about picking up nonverbal behavior. When they’re communicating with one another, they use nonverbal signals all the time. It makes up 90% of their communication. It’s what we autists supposedly lack the ability to do. But when we autists communicate by our behavior, well, that’s just a tragedy.

What’s the tragedy? That people can’t speak? Or that too few are listening?

Whether we’re verbal or nonverbal, does telling people to stay off social communication networks really create empathy for us? The Internet is how we find one another. It’s where many of us feel heard. It’s where many of us feel most comfortable. Staying away from any form of online communication will not draw attention “to the isolation and intense loneliness experienced by those who are impeded from connecting socially with others.” We’re not impeded from connecting socially online. And we wouldn’t be impeded from connecting socially in the rest of the world if people had a little more empathy for how we feel and met us halfway. At any rate, it’s counterproductive to tell non-autistic people to stay away from online sites when so many autistic people overcome “isolation and intense loneliness” by connecting with one another online. How can anyone possibly develop empathy for us if they’re not even aware that we speak loudly and clearly in our online communities?

The big pink elephant in the livingroom, of course, is that autistic people are not silent. Far from it. We communicate all the time, just like anyone else. But we are being silenced every day by the world we live in, and absolutely nothing about the Communication Shutdown speaks to the multitude of ways in which we are silenced:

We are silenced every time non-autistic people say we are silent.

We are silenced when “autism organizations” speak for us rather than including us.

We are silenced when the “autism community” isn’t led by autistic people.

We are silenced every time non-autistic people call each other “experts” and ignore the fact that we actually live the autistic experience every day.

We are silenced when people give to “autism charities” on our behalf, as though we are victims in need of rescue.

We are silenced every time we are ignored, in situations large and small.

We are silenced when people do not have enough empathy to invite us into a conversation.

We are silenced every time we are told we are “too sensitive” in the face of bullying, harassment, and social ostracism.

We are silenced every time that non-autistic people treat us as though we’re broken.

We are silenced by every act of disrespect, dismissal, and ignorance we encounter.

But we do not have to remain silent. Corina Becker at No Stereotypes Here has a counterproposal: Make November 1st Autistics Speaking Day. She writes:

[O]n November 1st, Autistic people should speak up and be heard … [I]n the absence of NT voices, Autistics should reclaim the Autism community by communicating in our own ways on our life experiences … I would like the day to acknowledge our difficulties, yes, but also share our strengths, our passions, our interests, our “obsessions” … And so, for the intent of raising Autism awareness and battling negative stereotypes about Autism, I call that November 1st be Autistics Speaking Day.

Her proposal mirrors my initial response to hearing about the Communication Shutdown. Flood the social networking sites with our voices. Provide lots and lots of links to blogs by autistic people. If you’re like me, and don’t use Facebook or Twitter, ask that someone you know publish a link to your best blog pieces.

Raise up your voices. Let us be heard.

And for all of you who want to raise “autism awareness,” I have a simple solution: Listen to us.

Rachel Cohen-Rottenberg blogs at Journeys with Autism. Speak Up on November 1st! appears here

under the terms of this Creative Commons License.

Rachel Cohen-Rottenberg’s recently published memoir is The Uncharted Path: My Journey with Late-Diagnosed Autism.