Neurodiversity » Politics

Emergence (Shift Journal Inaugural Keynote)

Andrew Lehman — Mon, 16 Jan 2012 08:37:53 +0000

On the autism rights and neurodiversity blogs in July last year, fury erupted around the radio show host Michael Savage’s comments that autistic kids were brats.

Savage said that autism was a “fraud, a racket.” He went on to say, “I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is.”

The rage of autism advocates communicated quickly. Home Depot, Aflac, Sears, Budweiser, Direct Buy, Cisco and Radio Shack withdrew sponsorship before the end of the month. Radio stations dropped the show.

As an activist and organizer, I feel like what I observed was a social change miracle. Society likes to keep its anomalies and minorities invisible. Savage’s words have revealed the power of a group that will not hide.

Deep into this great transition from a capitalist, hierarchical, patrifocal society to the horizontal, aesthetic-based, partnership society, events occur that provide a window into the future. Neurodiversity is almost invisible at present. It is becoming a central focus of society very quickly. July a year ago was a coming out party.

Autism and Asperger’s rights represent the third wave of genetic justice. Civil rights, the first wave, established the language, strategy and tactics for creating social change. Women’s rights and gay rights manifested integral aspects of the social structure conflict between matrifocal and patrifocal frames of reference, championing the rights of all peoples. The neurodiversity movement heralds the hidden, central theme of changes underway. The physical, neurological and behavioral features of autistic and Asperger’s children and adults are confounding to a society unaware that these individuals are the third wave of a massive social movement.

Evolutionary biological theory in the U.S. revolves around a belief that natural selection satisfactorily explains how evolution unfolds. Evolutionary developmental biology is relieving many academics of this failed frame of reference. Still, with scientists unable to make the connections between societal transformation and biological evolution, the evolutionary mechanisms responsible for the dramatic increases in neurological anomalies are little understood. Darwin proposed three dynamics as integral to transformation: natural selection, sexual selection and Lamarckian processes. It is sexual selection in the context of social structure and the influence of the environment (Lamarckian selection) on an embryo that are together responsible for a switch from patrifocal to matrifocal frames of reference and the re-emergence of ancient genotypes in the present day.

We’re not talking about regression or reversion. It seems that something wholly new is emerging. It is possible that we are observing the first stage of a synthesis of the two great paradigms.

The thesis is that there were ancient, dance-driven matrifocal societies with commanding women, cooperative men and consciousness only beginning to split. We communicated by gesture. Waking was not unlike dream. Myth and miracle felt personal. Rhythm and pattern were the central aesthetics. Children did not know their fathers.

The antithesis becomes ascendant with the Indo-Europeans. A patrifocal society characterized by split-brain speech makers demands that woman cooperate with males that pass down possessions to the sons. God was distant. The rhythm of society becomes the horse hoof as the warrior takes control of the agricultural economy, song and story.

In the midst of synthesis, it’s difficult to understand the implication of the re-emergence of an Asperger’s/autism neurology characterized by a tendency to know things whole while engaged in the rhythm of the part. Back in Africa, when language was only beginning to break our brains into two, we were more unconscious than conscious beings.

Indo-Europeanized, we became separate and split-brained, focused only on the part or on the goal, alienated and male dominated, destroying what seemed not useful, unable to easily see the repercussions of our actions or feel responsible to change our behavior if we did.

The synthesis is a neurology with an intuition for understanding the big picture with guidance by a brain that can achieve goals step by step, a brain that has differentiated and understands that wholes are made of parts. We are merging the unconscious experience of the whole with the conscious focus on the part.

Aesthetics + reductionism = self awareness. Nature + individuality = humanity. Ancient aboriginal + Indo-European = Neurosynthesis.

The neurodiversity movement is only now just acquiring its legs. It needs to convince society that autism and Asperger’s are not disorders, not just unique, but are the first steps toward neurological synthesis.

We’ve waited a long time for this synthesis. Savor every moment of these unique times. An age of miracles has returned.

…

Proceed to author’s FREE book download on this subject (The book is called Evolution, Autism and Social Change). 10 minute introductory video here.

The above first appeared at Shift Journal on 8/31/09, and served as the site’s de facto keynote entry.

This reposting marks the beginning of a series of resurrections from Shift Journal’s archives.

Pieces of Suicide

Mark Stairwalt — Tue, 13 Dec 2011 09:00:19 +0000

There’s a little back-and-forth echo that’s popped up between this site and Julia Bascom’s. This entry aims to amplify that little echo. Here’s Julia yesterday at her blog Just Stimming, after having thanked readers for recent comments and explained a bit about not having posted much lately:

“In the interest of directing you to something similar to read, an idea that needs to go viral, I’d like to link you to The Unbroken Spectrum: Stockholm Syndrome, over at Shift Journal. I did not write it. It’s important.”

The chain of echo runs backward from there to Julia’s Speech (without a title) republished here at Shift yesterday, to the “related” item I had placed at the bottom of her essay, which was my Stockholm Syndrome post that Julia was linking to. Their related-ness comes of the fact that they treat the same subject from different angles. Julia’s take opens outward from a more personal perspective while mine centers on parallels between hostages and autistics and expands to take in the whole of the spectrum. Both though deal with the breathtaking, terrifying extent to which autistics have been unable to avoid internalizing judgments made about us.

What strikes me tonight in fact, reading both pieces side by side again is how autistics are actually exquisitely sensitive socially. So much so that we are uniquely vulnerable to being “gaslighted,” to having our sense of reality undermined and replaced with one that better serves the purposes of others not like us. This exquisite social sensitivity has been explored by Rachel Cohen-Rottenberg in The “Intense World Syndrome” Theory of Autism, where she quotes researchers who conclude, “the autistic person is an individual with remarkable and far above average capabilities due to greatly enhanced perception, attention and memory. In fact, it is this hyper-functionality which could render the individual debilitated.”

There’s more though. Once you’ve been rendered “debilitated by your hyper-functionality” in a sort of no-fault, passive process in which no one does anything to you, that’s when “debilitate” becomes a transitive verb requiring an object. And that object is you. It’s at this point that you become a hostage to society, not because you lack sensitivity, but precisely because you are so exquisitely sensitive, so eminently programmable — even when that program, reflecting the judgments of others, is self-destructive.

Yes of course we have strengths. We know better than you they’re what keep us alive. Know this though: much of what many of us do in order to live in the world is just pieces of suicide, just as Stockholm Syndrome hostages will self-betray and will a bit of themselves to die inside in order to stay alive in their captor’s world; just as autistics will smack their heads against the wall because it’s ultimately less painful than trying to convince themselves, let alone everyone else, that they are maybe, possibly, worth something just the way they are.

What Julia and I are both saying I think is that there is a cost accounting that isn’t being done here. It’s an accounting many autistics are acutely, painfully aware of — how much self-betrayal in order to have a place here, how much death in order to make this loved one happy — but of which non-autistics remain either blissfully unaware or, well, this is part of the problem too.

Autistics don’t really know how aware of this dynamic any given person is. Many of us though are aware that knowing-and-not-telling brings power, and that power is seductive, for all kinds of reasons. So having this seductive dynamic out there without being able to talk about it, without being able to hold others responsible to not require our piecemeal suicide, it’s … destabilizing. It makes trust near impossible. Which in turn makes intimacy near impossible. And that among other reasons is why, as Julia says, “It’s important.”

[image via Flickr/Creative Commons]

related: Speech (without a title)

related: Cost Accounting

Speech (without a title)

Julia Bascom — Mon, 12 Dec 2011 06:05:37 +0000

Hi. My name is Julia Bascom and I’ve had it easy.

I had it easy. What this means is that in fifth grade I was the smartest kid in the class. I also did a lot of hiding under my desk, and I talked funny and moved stiffly, so the other kids formed a club. It had only one rule, the golden rule: you couldn’t talk to Julia.

I changed schools at the end of the year. I kept breathing, but then, I had to: I had it easy.

No one beat me up. They didn’t have to—I did a good enough job of that on my own.

I have a friend. We’ll call him Martin. Martin is autistic, like I am, although he doesn’t identify that way. In fact, nothing would make him happier than being just like everyone else. See, Martin and I are different. We both know that being different, being autistic, being disabled, is dangerous. We’ve both been bullied. We’ve both had it easy. We’ve both seen what our alternatives are—be just like everyone else, or don’t be anything at all.

The difference between Martin and I is that I know without a shadow of a doubt that this is wrong. Martin doesn’t.

Martin and I became friends because we were both worried about each other. Martin was worried because apparently no one had ever taught me how to pass for normal. I was worried about Martin and the way he was quietly twisting himself away. I only got more worried when he tried to teach me how to blend in, how to pass, when he yelled at me senior year for looking like that, because don’t you know you’ll get hurt, don’t you know you’ll die, looking like that?

I have another friend. We’ll call her Maria. Maria has also had it easy. She’s autistic like me, but she is more visibly disabled than I am. What this means is that when we went to get ice cream two weeks ago no one would sit near us. What this means is that people think that because I help her count out the money to pay for her order I should be ordering for her. What this means is that Maria is not permitted to just neutrally exist in public. Getting ice cream becomes an act of war.

I work with middle school students with significant disabilities in a mostly self-contained classroom. Some of them have had it easy—no one will talk to them, the other kids run away when they see us coming, the teachers don’t want them in their classes, but no one gets beat up. Some of them have permanent brain injuries from abuse. Like Charlie. Charlie goes into murderous rages and has almost killed people–he’s the sweetest kid, but someone decided to beat him enough that he doesn’t feel the world is safe for him. He’s right.

Kaley hasn’t been to school in two months. The social workers are sent away from the house and the state is content to leave it at that. I don’t even know if she’s still alive, and no one seems interested in finding out. Roger, who can’t feel or control his tongue, was kicked out of his foster home and into an institutional placement three days before Christmas because he eats too messily. His ex-foster mother now visits him regularly and expects him to call her “mom” and say that he loves her.

She says she loves him too.

The hell of it is, the world agrees with her.

Here’s the thing about being disabled: it sucks. It’s horrible in a million different ways, and not a single one of those ways is because I can’t do this or because I have this impairment. That would be too easy. Instead, every single reason translates roughly to because people are awful. Sometimes, for a minute, for a day, for a week, I think I can forget that. I delude myself into thinking that the reason I can buy ice cream without five different hostile stares, can be allowed to work in a school, can be invited to the occasional party, is because people really are okay, and not just because I have learned how to fake being normal, being human well enough to avoid some sort of weird ability-based xenophobia.

I’m wrong, of course.

I just spent seven hours at a conference about bullying. Here’s the genius behind really good, really effective bullying: it turns the victim into their own worst bully. I told you I never got beat up for being autistic. I want you to take a good look at me. See my glasses? Those are because I damaged my eyes banging my head in tenth grade. See the spots on my arms? Those are from where I tried to gouge out my skin all through high school. See the scars on my face? Those are a little more recent—same idea though: self destruct. There are a million more I can’t show you—even the insides of my cheeks are scarred. I can’t tell you how many pairs of sheets I’ve had to throw away because I woke up covered in blood—I’d tried to pick myself apart while I was sleeping.

I didn’t do this because I was depressed, or scared, or because I hated myself. I didn’t want to hurt. But I knew I had to. When I hurt, I was in my place. And smacking my head against a wall for an hour a day was ultimately less painful than trying to convince myself, let alone everyone else, that I was maybe, possibly, worth something just the way I was.

The thing about bullies is that, although they never go away—I went to a different school with different kids after fifth grade, but there were always plenty of bullies to keep me remembering—they cannot be with you every second of every hour of every day. They can do hundreds of subtle and nasty things to you, and they will, but eventually they will need to pee or go home or at least sleep. So what they do is program you so that you can continue to bully yourself in their absence. I still hear the chanted retards in my head whenever I play with a strand of beads. I still believe, in my stomach and pulse, the way you know to run from a lion or don’t jump in the campfire, that I shouldn’t be here.

I don’t need someone yelling at me to sit down, shut up, stop flapping—I do these things automatically now. No one needs to tell me that I’m worthless—I get that. Message received, message believed, message drilled into my bones. No one has to threaten and force me into some version of myself that is less visibly disabled, less obviously autistic, less real and I guess less threatening—I’ve carved off all those edges of myself into a smooth facsimile of what I need to be.

(That’s the only reason I’ve ever “had it easy”. Because I could do that. Because I have, or had, the rare ability to pull myself apart and twist myself into some new shape when ordered. I’m lucky, in other words, that I don’t have any glue holding me together. Lucky to be broken, because then there is nothing left for someone else to break.)

What I’ve just described is “having it easy”, and it’s actually not easy at all. It’s complete and utter psychological and emotional warfare, and there is no winning for us—they, the bullies, set the rules and the terms and they always win. Millions of us live like this every day—we have it easy, we can’t complain, this isn’t something that can be solved with curb cuts or an act of legislation, and so we die the death of a thousand cuts.

I told you about Martin, earlier. Martin always beat me on quizzes in class, but there is one thing I know that he doesn’t. I know that this is bullshit.

Here’s the secret. There is, in fact, one way to beat the bullies. See, what they want is to work themselves out of a job, to have you doing their dirty work for them. They want you to beat yourself up. So the way you win is by stepping out of the game entirely. The way you win is by knowing, being absolutely and irrevocably and 100% positive, that they are wrong.

It’s the tiniest thing.

It’s almost impossibly hard. How do you discover the world’s best-kept secret: that despite what you’ve been hearing since you were two and your parents started dragging you to doctor after doctor and the other kids stopped playing with you that you are actually perfectly fine, just fine?

When you are disabled, you are sick in every sense of the word. Disgusting, scary, dangerous, broken, wrong. Lesser. I knew this, had it memorized and lived my life accordingly. But one day I met someone else who was sick. “You’re sick!” I protested when they insisted on acting like a human being.

“Yeah, I am.” they agreed. “So are you.”

And then one morning I woke up. I was still sick. And I was also fine.

I was fine.

There is no equivalent to a GSA for disabled kids. We have to pass it on like a secret. You’re okay. We’re okay. Everyone else is wrong. We have a right to be here too. We’re not just sick. We’re not in doctors’ offices all the time. We’re okay.

We need that support, need some sort of physical community. Passing it on like a rumor isn’t enough. The moment we realize that the hateful people who fill and control our lives are wrong is the moment when everything can finally start to change. That moment shouldn’t even have to happen—it should be something that we just always know.

Things won’t get better until then.

Good-bye. My name is Julia Bascom, and I am, always have been, and always will be, fine.

Thank you.

Julia Bascom blogs at Just Stimming.

Speech (without a title) appears here by permission.

[image via Flickr/Creative Commons]

Autistics Speaking Day – Changing from shame to pride

Alicia Lile — Fri, 11 Nov 2011 06:00:03 +0000

My post for the Autistics Speaking Day.

It’s very common for autistic people to feel burdensome for our loved ones and for society, common to feel shame of being autistic, it’s sadly expected the existential guilty, there are entire narratives of how we should feel that (and how we don’t feel anything), how bad and wrong our autistic existence is, how who we are can be mourned, but this shouldn’t be happening, no one should feel like this, accepting this as normal is something that should be shameful for all that surround us, since they repeat this about us without feeling the weight of this judgement on their lives.

We also repeat this belief, we accept this shame as something natural, we feel the weight on our lives and the people who are free of this pain continue to hurt us, sometimes they hide this ugly thing in their love for us, they love us but if only we weren’t like that, this makes things worse, because we love too, we want to be loved completely, so that goes against our sense of self, we do our best (or our worse form another perspective) to look like everyone is supposed to be, not to be a better person, but to be a normal person, a non-autistic person.

One thing I need to clarify, many appear to understand something wrongly about being cured of autism, I do not wish to be “cured”, what I do wish is to love me the way I am, I also wish to keep changing to be the best person I can ever be, everyone changes, for better or worse, autistic people too, my changing as a person has nothing to do with being “more or less autistic”, with functional labels, with “symptoms of autism” or anything like that, it means that as a person we all change, I wish to keep being a good person and getting better, an awesome autistic person.
When we argue against cure, we don’t argue against having more skills, having a better life, being a better person, we want that, but we are always going to be autistic, and ultimately the really important part is to know that is a good thing.

Accepting Autism is not a defeat, is a great gift, it’s not the same as not changing or not wanting the best, is starting to love who we are (or your autistic child, sibling, friend, etc).

I think it’s enough of shame and guilty, of burdens, of prejudice, of sacrificing all for normality.

I think it’s time of acceptance, but even that is not enough. We need pride and love, not the type of – ‘I love you but if you were…’, but the’ I love you completely’.

Why do all of us need this?
A few examples of why, I read things from relatives of autistic people who worry me, like a parent of two children saying their typical child is wonderful, how the others members of the family are mentioned one by one as great people, but nothing about the autistic child, on a site about how Autism is terrible, not a single line about the autistic child, while the typical one is talked about with love, the autistic child is just the site theme and family burden, I read how an autistic person had their face lifted by their chin and looked in the eyes and how a parent says that there was no one there, I read how parents lost their (alive) children because of Autism, kidnapped by Autism, on these stories people listen and care about the family, I don’t, I think about those people who are not treated as people, those who ‘lost their souls’, I know they are right there, listening, this is terribly wrong and sad. We are right here and we are treated as we don’t exist.

How many times we must adapt and sacrifice for others? Why are we less of a person than others? Why are we never good enough?
I don’t know.

I am well aware of the difficulties and frustrations autistic people have, I have several of those myself, I’m not saying to pretend we have no difficulties, absolutely not, we can recognize that and feel pride at the same time, one thing does not exclude the other, I accept I have a disability (which is not a fate worse than death as many might think) but I am more hurt because of the guilt and shame, I suffer more because of the so-called normality than because of Autism.

I do not wish to overcome Autism. I’m autistic and I’m proud of it.

While I write this post, I can literally feel my mind fighting me, at the line above for example, I have a terrible feeling of wanting to erase that, because all I was ever told is that I’m not suppose to be proud, I’m suppose to be ashamed and guilty, I don’t know how many times I erased something good I wrote here and tried to diminish what I know is right, I changed from ‘being autistic is a good thing’ to ‘being autistic is not such a bad thing’, I changed so I could make allistic (non-autistic) people comfortable, I changed because my mind is fighting me, but then I decided to keep like I wrote first, because it’s not about allistic comfort, it’s not about the right to see Autism as a terrible thing, it’s about autistic people, all of us, it doesn’t matter how Autism affects you, everyone has the right to feel good being who they are, you don’t need to present arguments on why your existence is worthy, you don’t need to have this great splinter skill to compensate things, you don’t need talents, when I say everyone is worthy it means everyone.

So I am going to start to change how I feel about myself, how I feel about being autistic and disabled, I will start practicing being proud of it. It’s not easy when everyone disagrees, when the expected is something else, when the idea of being autistic and proud is considered ridiculous and sometimes even dangerous, I know all the possible arguments people will say, that I can only feel that because I’m ‘high-functioning’, I’m not and this is not the point, I will read the “what about the severe type of Autism?”, well, guess what, the more affected by Autism need this too, all people need to feel good about themselves, if you can’t talk and people treat you like there is no one there (I know this because of personal experience) you need this even more.

I know that life can be extremely hard for autistic people, I live it, let’s not make it worse, saying Autism makes someone suffers as an argument here doesn’t work, why the person is really suffering? It could be something that has nothing to do with Autism, if other people are cruel to you, it’s not alright to say they treat you badly because you are autistic, they treat you badly because they are terrible people, if you have serious difficulties, feeling that your existence is bad is not going to help you, why make things worse when you can feel better?
Blaming the person or Autism (which can mean the same as saying that something in that person is bad) for every suffering doesn’t help, maybe the person would have more joy, more happiness when feeling that the fault is not theirs, that who they are is alright, that being autistic is a good thing.

We need to accept Autism, we need to feel proud of being autistic, we need to love ourselves.

Alicia Lile blogs from Brazil at Moonlit Lily.

Autistics Speaking Day – Changing from shame to pride appears here by permission.

Occupy The DSM (Open Letter and Petition to the DSM-5 Task Force and the APA)

Guest — Tue, 25 Oct 2011 05:07:50 +0000

To the DSM-5 Task Force and the American Psychiatric Association:

As you are aware, the DSM is a central component of the research, education, and practice of most licensed psychologists in the United States. Psychologists are not only consumers and utilizers of the manual, but we are also producers of seminal research on DSM-defined disorder categories and their empirical correlates. Practicing psychologists in both private and public service utilize the DSM to conceptualize, communicate, and support their clinical work.

For these reasons, we believe that the development and revision of DSM diagnoses should include the contribution of psychologists, not only as select individuals on a committee, but as a professional community. We have therefore decided to offer the below response to DSM-5 development. This document was composed in recognition of, and with sensitivity to, the longstanding and congenial relationship between American psychologists and our psychiatrist colleagues.

Overview

Though we admire various efforts of the DSM-5 Task Force, especially efforts to update the manual according to new empirical research, we have substantial reservations about a number of the proposed changes that are presented on www.dsm5.org. As we will detail below, we are concerned about the lowering of diagnostic thresholds for multiple disorder categories, about the introduction of disorders that may lead to inappropriate medical treatment of vulnerable populations, and about specific proposals that appear to lack empirical grounding. In addition, we question proposed changes to the definition(s) of mental disorder that deemphasize sociocultural variation while placing more emphasis on biological theory. In light of the growing empirical evidence that neurobiology does not fully account for the emergence of mental distress, as well as new longitudinal studies revealing long-term hazards of standard neurobiological (psychotropic) treatment, we believe that these changes pose substantial risks to patients/clients, practitioners, and the mental health professions in general.

Given the changes currently taking place in the profession and science of psychiatry, as well as the developing empirical landscape from which psychiatric knowledge is drawn, we believe that it is important to make our opinions known at this particular historical moment. As stated at the conclusion of this letter, we believe that it is time for psychiatry and psychology collaboratively to explore the possibility of developing an alternative approach to the conceptualization of emotional distress. We believe that the risks posed by DSM-5, as outlined below, only highlight the need for a descriptive and empirical approach that is unencumbered by previous deductive and theoretical models.

In more detail, our response to DSM-5 is as follows [these are headings only; for full details and references see original version linked below]:

Advances Made by the DSM-5 Task Force

Lowering of Diagnostic Thresholds

Vulnerable Populations

Sociocultural Variation

Revisions to Existing Disorder Groupings

New Emphasis on Medico-Physiological Theory

Conclusions

In sum, we have serious reservations about the proposed content of the future DSM-5, as we believe that the new proposals pose the risk of exacerbating longstanding problems with the current system. Many of our reservations, including some of the problems described above, have already been articulated in the formal response to DSM-5 issued by the British Psychological Society (BPS, 2011) and in the email communication of the American Counseling Association (ACA) to Allen Frances (Frances, 2011b).

In light of the above-listed reservations concerning DSM-5’s proposed changes, we hereby voice agreement with BPS that:

• “…clients and the general public are negatively affected by the continued and continuous medicalization of their natural and normal responses to their experiences; responses which undoubtedly have distressing consequences which demand helping responses, but which do not reflect illnesses so much as normal individual variation.”

• “The putative diagnoses presented in DSM-V are clearly based largely on social norms, with ‘symptoms’ that all rely on subjective judgments, with little confirmatory physical ‘signs’ or evidence of biological causation. The criteria are not value-free, but rather reflect current normative social expectations.”

• “… [taxonomic] systems such as this are based on identifying problems as located within individuals. This misses the relational context of problems and the undeniable social causation of many such problems.”

• There is a need for “a revision of the way mental distress is thought about, starting with recognition of the overwhelming evidence that it is on a spectrum with ‘normal’ experience” and the fact that strongly evidenced causal factors include “psychosocial factors such as poverty, unemployment and trauma.”

• An ideal empirical system for classification would not be based on past theory but rather would “ begin from the bottom up – starting with specific experiences, problems or ‘symptoms’ or ‘complaints’.”

The present DSM-5 development period may provide a unique opportunity to address these dilemmas, especially given the Task Force’s willingness to reconceptualize the general architecture of psychiatric taxonomy. However, we believe that the proposals presented on www.dsm5.org are more likely to exacerbate rather than mitigate these longstanding problems. We share BPS’s hopes for a more inductive, descriptive approach in the future, and we join BPS in offering participation and guidance in the revision process.

***

The above appears in expanded form here, where there is a link to sign the petition in support, and where sponsors are listed as follows:

Society for Humanistic Psychology, Division 32 of the American Psychological Association, in alliance with Society for Community Research and Action: Division of Community Psychology (Division 27 of APA), Society for Group Psychology and Psychotherapy (Division 49 of APA), and The Association for Women in Psychology. We invite mental health professionals and mental health organizations to sign on in support of this petition to the DSM5 Task Force of the American Psychiatric Association.

[image via Flickr/Creative Commons]

Diary of a Drooler

Julia Bascom — Wed, 19 Oct 2011 12:16:35 +0000

This is a story about disability. This is a story about the politics of drool. This is a lot of things, and maybe you should just read it.

So I want you to imagine being born a drooler.

We’re not talking just the adorable amounts of saliva an infant will naturally produce as their teeth come in. You grow up with that, sure, but then it never goes away. Some quirk of muscular development and oral-motor control leaves you with a constant stain of spittle around your lips and on your chin.

You grow up.

You have a small toddler friend or two, before anyone knows better. But you grow apart, and then one day in kindergarten you turn away from your playdough to answer someone’s “hello” and a string of drool lands on the tabletop.

Your cheerful “hi” is answered with a laugh, a stare, a jabbing, gesturing finger.

You remember your mother, always scraping at your chin with washclothes and whispering implored reminders to “swallow” and keep your mouth shut. You realize that no other kindergartener has sleeve cuffs which are crusty from reaching up to wipe their mouths every five minutes. The florescent lights above burn through your back, your playdough feels gritty in your fingers, and you’re sure that you’re about to melt under the table in a puddle of drool because you legs get this horrible shaking feeling as though they’re made of water. It spreads, and it’s like a wind or a shudder goes through your stomach and leaves your head empty and clear.

You don’t realize it at the time, but you are one of the lucky ones, in a way. You do learn to go through life with your lips clamped shut around each other. You learn to swallow so that your mouth is always perfectly dry. Your fingers constantly flutter to your chin just to make sure. You spend hours each day just concentrating on the muscles of your jaw and mouth, more intimately acquainted with them than any other part of you. In some ways, you stop being conscious of yourself as anything except a mouth. The rest of your body seems far-away and empty, everything caught up in your war against your own saliva.

It doesn’t sound it, but you are so incredibly lucky. If you just fake it well enough people don’t think of you as a drooler, just another distant and distracted and distrustful kid. It will be years before you are first called retard, and for a very, very long time you are sure you can get away with it, be just like everyone else with one tiny little secret.

You never go to sleepovers or let yourself fall asleep on the bus, because you can’t control it when you sleep and you know that drooling is just a disgusting crime, grosser than eating your boogers and punishable in all sorts of intricately painful ways. But it really does seem as though, so long as you take some reasonable precautions and devote three seconds out of every minute to monitoring your mouth, you’ll be just fine.

And then you’re in middle school and everyone is laughing at some joke and it happens again, in a rare moment of laxness, and then everyone is laughing at you or else pretending not to see—and you never thought that could actually be worse, but it is—and you realize that no, fuck it all, you’re never going to get away with or from this.

You don’t want to be a drooler. No one wants to, and no one wants them. If there is one thing every middle schooler needs, it is to be wanted, even as just a friend, by someone. To belong, to fit in, to have a place where you are welcome. Droolers get none of that. But you’ll be fine. You’ll just try harder and take what abuse you get (because you deserve it, you can’t even control your own secretions) and everything is going to be fine.

But your brain starts to shift a little.

You hear your voice on a recording for your answering machine for the first time and you spend the next five minutes wondering who punched you in the stomach. That voice. Is it really yours? It doesn’t sound anything at all like the one you hear in your head, and when you ask your mom mutters something about sound waves and bone conduction but all you can hear is that stupid, round, fishy, wet voice that you’ve apparently been using all your life. You had hoped you were a lot of things, fierce and funny and smart and competent and cool, but that, that is the voice of a drooler. People don’t even need to see your baby pictures, they don’t even need to see you compulsively swallowing to the point that your mom takes you to a doctor and asks about tics, because they can tell the instant you start talking.

You start to wonder if this is some great cosmic secret that everyone else got to know before you, and the thought makes you feel lost and sick and pathetic and you just know that you’d better be getting comfortable with that feeling because it’s going to get awfully familiar.

And you fight, you feel like a baby kitten but even they have claws so you scratch and fight and do everything you can to keep that feeling of utter uselessness from settling permanently in you. You sign up for all honors classes for next year and you try to dress like the most popular girls and you try out for soccer even though you are the best in the whole school at tripping over your own feet and you are so damn happy when Eric asks you to the eight-grade graduation dance that you let him kiss you afterward even though he tastes like pepperoni and smells like too much cologne.

And the kiss is horribly wet and sloppy and you are now known as the worst kisser in your whole year and you just want to die.

High school is unremittingly terrible, even though you aren’t caught drooling once. But you make tiny mistakes in every algebra problem that create bigger mistakes and big, ugly red ‘F’s even though you are good at math and you love it. But your teachers talk so fast and you can never make rhyme or reason of what they say and so you spend your classes wondering how you can be so smart and yet so dumb and if you ever were smart at all and how are you going to past this test, and when that gets boring you draw passive-aggressive comics about your “friends” and their stupid boyfriends eating poisoned chocolates and getting stabbed with lightsabers. Everyone else bitches about long hours spent studying and you wonder if you should tell them that you are up until two every night just staring at your textbooks and worksheets and googling frantically and unable to make sense of any of it, somehow managing to string enough figures and terms together to create a passable bullshitting act that keeps you in the honors track with them. But you don’t tell, of course you don’t, because then people would find out and you can’t be found out again, you’re pretty sure they would kick you out of your classes and being able to scam your way into that elite little group of scholars is the only thing that makes you think that maybe you don’t deserve to die.

But one ever tries to kiss you again, or even invites you to a single party for four years, and every time you remember this all you can see in a spot of drool swallowing up the latest 68 handed back to you in geometry.

It doesn’t make much sense, but you come to see every little imperfection as a crack breaking across the surface of your act, ripping apart your pretensions of normality, of superiority, and it fills you with hate and fear and makes your nose ache with the smell of rubbing alcohol and your palms punch into your thighs until they bruise.

It just steadily keeps on mounting up, and every morning you wake up with a sticky chin and damp pillow and it gets harder and harder to climb out of bed. You know you’re failing on every level, but you’re terrified of what will happen if you stop. So you get up, day after day, and emerge every day from high school battered and empty, and that awful feeling of watery legs and a shivering stomach becomes your default setting.

You realize that you’ve never really left kindergarten.

The admissions officer asks you, sounding bored, who you are, what makes you tick. And you just sort of stare blankly back, because you’ve been trying not to think about that since you were five and somehow, explaining that you’ve spent your whole life just pretending, and passing, getting by and trying to blend in and not let anyone see how empty you actually are, just filled with drool…that doesn’t seem like the sort of answer expected.

You realize that you can’t answer the question, you don’t know how to even begin to think about the answer, because sometimes you are so focused on swallowing and sealing your lips that you forget the rest of your body and just sort of bounce along the lockers as you navigate from class to class. You want to tell them that your earliest memory is of a washcloth against your face, that your first nickname was “Droolia”, and that this one special ed boy absolutely terrifies you because he has to wear a kerchief around his neck to catch his drool and what if someone connects you two? You want to ask if they’ve ever been sitting in English, doodling in the margins of a vocabulary worksheet, and then suddenly felt like they’ve been running for miles, so out of breath with their heart hammering in their heads, legs watery, shivering and shaking. You want to tell them that your least favorite thing to do ever is to go to the dentist, because your mouth is open and you can’t swallow for half an hour. You want to point out that you never smile for the camera, that you actively run away whenever a camera comes out because the area around your mouth is so slack and rubbery and you just cannot control it.

You smile and say something about liking to draw comics and observe people for new material.

You fall asleep on a pile of your comics at RISD, and when you wake up they are wet and sticky and ruined.

They’re due tomorrow. Or today, actually, since it’s three in the morning. You can’t ask for an extension—what are you supposed to say, sorry I never learned to control my saliva, can I have an extra day to redraw them because I drooled all over them?

You drop out instead.

You drop out of everything.

And the boy who pointed at you in kindergarten? Eric, who kissed and told? Your friends, who never bothered to ask why you wouldn’t come over to their sleepovers? Everyone who ever let you know, subtly and quietly, that you were fake and damaged and disgusting, who may have only said that out loud once or even never but who always gave you a million little reminders?

The ones who broke you apart because a few of your muscles developed a little more slowly?

They are just fine.

Julia Bascom blogs at Just Stimming.

Diary of a Drooler appears here under the terms of this Creative Commons license.

[image via Flickr/Creative Commons]

Why Shouldn’t It Be Easy For Everyone? Why Shouldn’t It Be Easy For Autistics?

Mark Stairwalt — Mon, 17 Oct 2011 08:38:34 +0000

Just a quick companion piece here for Zygmunt’s account of his grappling with the social justice system of extroverts — a group that if not provably neurologically distinct, certainly seems to have its own style of consciousness. A lot has happened in the world of “deserval” in the nearly two years since Extroverts and the Concept of “Deserval” was written. Public consciousness is increasingly occupied with questions of who deserves what; as I write this morning the Occupy Wall Street movement has entered its thirtieth day with related protests underway in dozens of other American cities, while this past weekend several European cities had tens and hundreds of thousands of people in the streets demonstrating for economic justice.

In drawing a distinction based on number, the protesters’ rallying cry “We are the 99 percent” is drawn from the same well as last December’s entry Which War Are We In: Good vs. Evil, or The One vs. The Many? That post also brought up the significance of distributed, decentralized systems, which was a theme I was following closely at the turn of the year as governments around the world were coming to terms with Wikileaks and the distributed network known as the internet. In the New York protests and in others modeled on it elsewhere, one signature move is exactly this turning of a decentralized face toward the authorities, with no discernable leaders and as yet no specific demands. As calls for the occupants of Zuccotti Park in New York to narrow and unify their objectives along ideological lines poured in from groups both opposed to and “concerned” for the movement, I couldn’t help but think of the spat I barged into a couple months ago, when the call was going up for the neurodiversity movement to unify its goals and objectives in like manner.

With all this in mind, that both the neurodiversity movement and those who fly the banner of “We are the 99 percent” are engaged in a struggle of The One vs. the Many, I wanted to throw out three quotes I’ve run across recently, in order to encourage consideration of neurodiversity in light of what’s being learned by and from the ninety-nine percenters.

The first and most lengthy comes from Mike Konczal’s Rortybomb, one of the Top 25 Best Economic and Finance Blogs from this year’s Time Magazine roundup. Konczal has done something fascinating with the We Are The 99 Percent tumblr. “At the site,” as he relates, “people hold up signs that explain their current circumstances, and it tells the story of a whole range of Americans struggling in the Lesser Depression. It is highly recommended.” He goes on, “In order to get a slightly better empirical handle on this important tumblr, I created a script designed to read all of the pages and parse out the html text on the site … After collecting all the text on all the pages, the code then goes through it to try to find interesting points.”

Note: before getting hung up on literal thinking here, remember that while autistics may represent far from ninety-nine percent of the population, autism itself represents the fact that there is more than one way of being in the world. There are in fact many, Many legitimate ways of being in the world, and this is where we join the battle of The One vs. The Many.

Back to Konczal’s statistics, he comes up with a graph of the age distribution of those who had posted (about a thousand at the time) along with the twenty-five most frequently occurring words describing the relevant concerns of posters — and what he then does with and notices about those words should be not only disturbing but familiar to anyone living as or raising up an autistic person.

So if the 99% Tumblr was a PAC, what would its demands look like, and what ideology would it presuppose? Freddie DeBoer is discouraged after reading the 99% tumblr. He’s concerned it reflects a desire for restoration of the glory days of the 90s-00s, which concerns him because “this country cannot be fixed by wishing to go back to the economics of 2005.” Concerned that the solidarity is one that, at most, is a I-got-mine-you-go-get-yours form of neoliberalism (as he imagines it, “I went to college and I don’t have the job and the car and the lifestyle I was promised”), DeBoer is worried that We Are the 99% isn’t “a rejection of our failing order. It is an embrace of it in the most cynical terms.”

With all due respect to DeBoer, the demands I found aren’t the ones of the go-go 90s-00s, but instead [a] far more ancient cry, one of premodernity and antiquity.

Let’s bring up a favorite quote around here. Anthropologist David Graeber cites historian Moses Finley, who identified “the perennial revolutionary programme of antiquity, cancel debts and redistribute the land, the slogan of a peasantry, not of a working class.” And think through these cases. The overwhelming majority of these statements are actionable demands in the form of (i) free us from the bondage of these debts and (ii) give us a bare minimum to survive on in order to lead decent lives (or, in pre-Industrial terms, give us some land). In Finley’s terms, these are the demands of a peasantry, not a working class.

A peasantry, not a working class. My takeaway here, aside from the heartbreaking, infuriating implications for we ninety-nine percenters in general, is that autistics in particular have been denied similarly actionable demands all along, in the form of (i) free us from the bondage of uninformed, unreasonable expectations regarding our behavior, expectations that can never be met without informed and reasonable accommodations, and (ii) give us the accommodations, understanding, and respect we need in both our physical and social worlds (yea, though “territory” both cheap and dear to many will have to be turned over or shared in the process) so that we may lead decent lives.

My takeaway is that autistics have been living like peasants all along.

Here I’ll pause to say that I follow Ari Ne’eman on Twitter and that save for two occasions I have never, ever known him to share or comment on anything not directly related to his work and his concerns as the first openly autistic presidential appointee, serving on the National Council on Disability. And yet twice in the days since the Occupy demonstrations began I have seen him making mention of them, wondering what will come of it all. And so of course I don’t know that I’ve seen Mr. Ne’eman’s focus waver at all actually.

***

My second quote is from Jack Crow, who appeared in this space not long ago with Advice for Children, Unsolicited. I introduced Jack to Shift Journal from a comments thread on his blog The Crow’s Eye; he is one of the few people I’ve ever met who got what this site is about immediately with little more than a sentence’s worth of explanation. Here he is developing an idea that actually has appeared in two posts that I’m aware of; I’ll combine them here into one train of thought:

At the point of resistance, where we meet others who want to struggle, who want to fight, who have reached the apex of a necessary question, our origins matter less than our aims.

“What is that question? ” you might wonder.

I’ll gladly tell you. The question is, “Why shouldn’t everyone have it easy?”

I mean, everyone. If you can ask this question, I kindly submit to you that you are all the way there.

So why not take the next step?

Why not resist?

***

6. A coherent message which can be simplified to this: It Should Be Easy For Everyone. This conservatarian/bootstrapper ethic which dominates our culture and society has got to be fucking attacked, and mercilessly. Hard work and poverty don’t improve character. They break lives.”

It Should Be Easy For Everyone.

It should be easy for everyone.

It should be easy for autistics.

It Should Be Easy For Autistics.

***

The final quote I have is from technologist, science fiction author, and journalist Meredith L. Patterson aka @maradydd on Twitter where her profile describes her as “angry young mathematician.” Her words might well have been posted with the hashtag #contextfree, but I expect if you’ve read this far it’s safe to let them speak for themselves:

@maradydd Meredith L Patterson
The *whole point* of privilege is “Everyone deserves X.” Do not forget this.
14 Oct via web

[image via We Are The 99 Percent Tumblr]

Extroverts and the Concept of ‘Deserval’

Zygmunt — Mon, 17 Oct 2011 05:17:28 +0000

We turn on the TV and encountering the concept is inevitable:

“I deserve it.” says a waifish, urban thirty-something woman as she justifies buying that expensive dress or that decadent slice of raspberry chocolate cheesecake in the store window.

“Why pay more? We’ll give you the low price you deserve!” says the affable fortyish car salesman with a silver buckle and cowboy hat during the commercial break.

When we turn off the TV encountering the concept is inevitable:

Most extroverts seem to have a concept that there are things they ‘deserve:’

Lower prices, a raise, free health care, flexible mortgage rates, a pension, a secure retirement, a facial, a new set of power tools, disposable income, a stable career, honest politicians……….

How do they decide what they deserve? Why do they deserve it? Isn’t the whole idea of deserving completely subjective and fluid? Another TV cliche comes to mind:

Henchman: Master, I brought you the power crystal as you commanded! (hands it over)

Cardboard Cutout Villain: Ah, finally! I have it now. Now I will give you exactly what you deserve!

*Henchman greedily anticipates goodies right up to the moment Villain pointlessly kills him with the power crystal*

As an introvert I looked to history and to the people around me without finding any sensical answer. I was confused. Surely the concept of deserving was entirely meaningless. No one gets what they want just because they decide they deserve it! Why would anyone actually be swayed or flattered by a sycophant assuring you that you ‘deserve’ more? Why would someone justify their actions with ‘deserval.’ What do they see in the whole empty idea of deserving something?

I got an inkling when I for a time interacted with kids in a classroom setting. The people I was working for insisted I give the kids points for answering questions in class and taking away points when they misbehaved or didn’t turn in homework. There was an entire elaborate system on the board for everyone to see with a tally of total points for every kid who passed through the room in the course of a day. The kids had created an entire system of social prestige around these point rankings that they took very seriously.

Children have a very strong sense of a primal, tribal level sense of social justice. They would be horrified if they thought one of the students deserved a point and I hadn’t given it.

When given an extra point on accident, even the beneficiary would instantly come forth and tell me to take away the undeserved point.

The kids always screamed for the worst possible punishment for anyone they saw breaking the rules. When punished themselves, they accepted it glumly but without question. As much as they hated punishment, they seemed to concede that they deserved it.

I realized that most of these children, especially the extroverted ones carry some semblance of this tribal level concept of social justice into adult life.

I began to realize I was rather strange for not having an intuitive grasp of ‘deserve.’ Upon further reflection I realize that the whole idea ceased to have meaning for me long ago during my own childhood. Living as an outsider from the outset, I took plenty of punishment just by virtue of being insufficiently protected from the pent up malice of others. It was clear I hadn’t done anything bad to anger those who gave me difficulty. There was no reason for any of it. Whether I deserved or didn’t deserve had no meaning at all.

As an introvert, I was never truly part of the tacitly understood justice system that governed most of the other children. Partly because of my fundamental personality and predispositions, partly because of the isolation created by my predispositions, I never fully acquired the concept of ‘deserval.’ In absence of this tribal justice, I viewed the school world around me in terms of power relationships. Bullies didn’t deserve to have power. They had power because they were able to take power. Really quite simple. I also had an inkling at an early age that bullies would never treat insiders the same way as outsiders. They would even be quite deferent to someone higher ranking. Was there any reason the people the bullies respected deserved respect? Not really. They just had more power.

A group of kids who knew each other in a structured classroom environment functioned well using their inborn senses of deserval. The point system I had to use made abundantly clear how every kid in the classroom was aware of the exact prestige level of every other kid. Each kid had an astoundingly precise mental tally of what every other kid deserved or didn’t deserve in class. Their feelings of justice and injustice were visceral and resulted in emotional protest whenever there was the slightest breach.

Now let’s look at these kids as adults. Most of adult life takes place outside of a structured classroom and they live in a society full of millions of strangers. The tribal level deserval impulse runs amok in this environment. When most people they meet have outsider status, they are not subject to tribal ethics. Furthermore everyone needs to compete to get ahead. Even people who aren’t strangers are often competitors. As pressure increases, everyone has to work hard for survival and for prestige. When people work hard just to make it, the deserval meter goes right off the charts. However, they’re hard pressed to find anyone who will acknowledge the fullness of what they think they deserve. There’s no impartial chief or arbitrator keeping track of points on the board. Most adults get cheated out of what they deserve. The daily flouting of their intuitive systems of justice makes them increasingly sure that they deserve compensation while others deserve punishment. Thus getting what they deserve by any means becomes justified on the most deeply visceral level. Since others do not even seem to acknowledge the intuitive justice system, they are outsiders who do not need to accommodated or given consideration anyway.

This ‘justice gap’ attitude seeps into all of life until a Surface person sincerely believes they deserve to eat raspberry chocolate cheese cake without paying the consequences of eating it. On the most primal level, deserving is about compensation for the crushing pressure and wrongs inflicted by an unjust life. When ‘compensation’ is inevitably canceled out by consequences, the Surface person has been cheated yet again of getting any closer to a measure of tribal justice.

The deep and unobtainable nature of this compensation fantasy makes it ideal content for advertising. What better way to reach people than to promise to soothe their battered egos, to promise to scratch that itch they can never quite seem to reach, to relieve the hurt that nothing seems to cure?

Zygmunt blogs at Kingdom of Introversion (and elsewhere).

Extroverts and the Concept of “Deserval” appears here by permission.

[image via Flickr/Creative Commons]

Autism War Fizzles Out

Gwen McKay — Fri, 30 Sep 2011 06:32:24 +0000

Five years ago, the Combating Autism Act was passed with great fanfare, authorizing a billion dollars in federal spending for autism research. The act’s proponents made clear, in language every bit as martial as its title, that the research would focus on cause and prevention. From their point of view, a holy war against autism had just been launched — a grand crusade to slay a terrifying, child-devouring demon. Autism Speaks, which was then a fledgling organization, had set forth its agenda in no uncertain terms upon its launch in May 2006: Within a decade, autism would become “a word for the history books.”

The act contained a sunset provision and was scheduled to expire on September 30, 2011. During this five-year period, scientists conducted many genetic studies and other basic research aimed at identifying potential causes of autism. As it turned out, the uncharted terrain over which the holy warrior-knights rode out to battle wasn’t quite what they had anticipated. There were plenty of interesting topics for well-funded scientists to delve into, but nobody found any dragons to slay. Like other crusades throughout history, it got harder to keep the foot soldiers obediently marching toward that Promised Land of pure-minded souls purged of their neurological differences.

When a reauthorization bill was introduced in Congress to continue the research funding beyond the original five years, the tenor of the debate couldn’t have been more different. Words like “eradicate” were nowhere to be heard. Instead, the bill’s proponents argued that the research would lead to new therapies that would help to integrate autistic people into society. Conservative opponents said that they’d prefer to see medical research funded without allocating specific amounts to autism or other conditions, so that the agencies would have discretion to spend the funds as they judged most useful. Self-advocates pointed out that the strong focus on causation research had done a disservice to the autistic population by reducing the funds available for much-needed research in other areas, such as education, communication, and service provision.

On all sides of the debate, there was a general agreement (at least publicly) that supporting autistic citizens should be a goal of autism research. The dispute had to do with how that goal might best be accomplished — whether by passing the reauthorization bill or by letting the act expire and starting afresh. In short, the war that began in 2006 had thoroughly fizzled out, leaving only politics as usual.

House Majority Leader Eric Cantor, who had made clear his opposition to funding medical research through condition-specific legislation, initially refused to bring the reauthorization bill up for a vote in the House. After a frenzied flurry of lobbying by the bill’s proponents, Cantor agreed to bring it up. It passed the House on Tuesday evening, the 20th of September, but continued to face opposition in the Senate and no prospect of a floor vote there. Because Congress was scheduled to leave for a weeklong recess on Friday evening, Sept. 23, the situation in the Senate seemed likely to cause the funding to expire by operation of the sunset deadline.

Friday came and went without the Senate having taken any action on the reauthorization bill. Other events caused the Senate to stay in session, however. Although the House had passed a continuing resolution to keep the government running at the end of the fiscal year, Senate Democrats objected to it because they were concerned that it might not provide enough money for disaster relief. Accordingly, Senate Majority Leader Harry Reid scheduled a vote on the continuing resolution for Monday. Upon finding that there was indeed enough disaster-relief money, the Senate passed the resolution. Taking advantage of the unexpected opportunity for more discussion of autism research, proponents of the reauthorization bill reached a compromise whereby Senate conservatives withdrew their opposition in exchange for greater fiscal oversight. Literally at the last minute, the bill passed the Senate by voice vote.

It’s worth noting that even under the original act (which has now been extended for three more years), federal research agencies have not been micromanaged to the extent of being required to fund specific studies; the act simply provides a general structure for making funding decisions. Thus, it remains possible that the research might at some point take a more neurodiversity-friendly direction. In any case, the discoveries made so far about the complexity of autism suggest that there is no prenatal test or other history-book event on the research horizon.

Of more interest than the actual disposition of the funds, I’d say, is what the debate has revealed about the political landscape. The cure lobby often has boasted of its vast influence in the halls of power; but when put to the test, it barely managed to squeak out a victory through a highly improbable series of events. Further, the intemperate language used (such as, among other things, calling House Leader Cantor a dishonest betrayer for not promptly scheduling a vote on the reauthorization bill) surely has burned major bridges in Congress and will have lasting repercussions. To the extent that the public has even been paying attention to the last remnants of this overblown crusade, it is now obvious that autism’s would-be emperor has no clothes.

[image via Flickr/Creative Commons]

Welcome, Crow’s Eye Readers

Mark Stairwalt — Thu, 29 Sep 2011 09:40:53 +0000

We’ve been getting a significant traffic bump from the recent comments thread and/or the blogroll (thanks, Jack) over at political blog The Crow’s Eye, and since it may not be readily apparent what the relationship between these two sites might be, I want to bring into focus some of what Jack’s readers might find relevant here. The immediate connection is that I noticed a post of his this week that had nothing to do with autism as such, but which advises a characteristically hard look at the uses and misuses of social graces. Social graces being a well-worn friction point between autistics and society, it’s a topic we’ve touched on more than once. Struck by the parallels between the Crow’s Eye post and two entries in particular at Shift, I asked if I might republish Advice for Children, Unsolicited.

Jack not only assented, but proved to be that rare newcomer who gets what Shift Journal is about with no explanation needed, commenting ”It’s interesting to read you on the conflict between the medical establishment (Big Autism, the attempt to cure the condition) and those struggling as persons who happen to be autistic.” I don’t know how notorious we can claim to be at Shift yet, but if the contrarian group blog Corrente is accurately and ironically described as ”the notorious C-list blog that everyone hates and no one reads,” that may not be a bad way for folks from Left Blogistan to understand Shift’s position in the larger world of autism — but the relevance, I think, only begins there.

For one thing, as Jack set the table for me to expand on in the comments thread back at The Crow’s Eye, there are parallels between the way the conservative movement can be seen to draw energy from repressed and projected homosexuality, and the energy that’s available from similarly repressed and projected autism. Just as As Joanna Russ pointed out one intersection of politics and sexuality by noting that ”Homophobia isn’t there to keep homosexuals in line. Homophobia is there to keep everyone else in line,” the intersection of politics and autism-phobia is in the same neighborhood, just one block over.

Consider that very few gay people these days grow to adulthood without knowing what homosexuality is, even if they can’t talk about being gay. Imagine how terrifyingly confusing it must have been though to grow up gay when large swaths of the population didn’t even have a vocabulary for that experience. That’s the sort of energy generated today by people who are autistic and don’t know how to talk about it — energy that feeds into our political and personal lives in ways at least as significant as repressed homosexuality.

Many of course don’t wind up repressing and projecting; one turned up in the comments thread at Jack’s. Justin offered that he has effectively self-diagnosed as an adult, and related that “the realization after reading a bit more that I probably am [autistic] was an interesting set of moments for me.” He went on: “In the context of this post, I wonder how much of the combination of the two [autistic characteristics he'd identified] affect my own politics.”

Shift Journal is predicated in part on the notions that there are a lot of Justins out there (most without any clue that there’s a closet to be in or out of), that the autistic spectrum extends well into what we think of as the general population, and that we’ve yet to take measure of the implications, political and otherwise.

More that may be of particular interest to visitors from the political blogosphere: Shift Journal was created by a political activist, Andrew Lehman, founder and co-director of The Peace, Justice and Environment Project, and now sidelined by a stroke. The impetus for Shift seems to have been at least two-fold: one was a generous effort to provide me with a platform for the ideas I had been sharing with him via email; two was as a vehicle to promote the book he was writing on autism, evolution, and social change which was finished in time for release on the day his medical situation took him out of commission. Third I think was to provide a commons for discussions such as the one we’ve sparked here.

Andrew’s book is grounded in evolutionary theory and years of dedicated auto-didactism; anyone wishing to dive headfirst into the possible relationships between autism, evolution, and social change can download it from his website. While my perspective owes more to field observation, rumination, and a smattering of cultural anthropology, I can say Andrew and I agree on shift as an operative word. As he and I were the only two contributors at launch, and as Shift’s focus has naturally meandered as other contributors have come on board, those looking for political fodder may find the best hunting in the early months of the archive, though there are examples throughout and not only from Andrew and myself — when you find them though, I’ll warn you, Shift is a big-picture endeavor, lacking the feel of hand-to-hand combat and reactive grappling you can find at Jack’s place. If The Crow’s Eye is the hashassin, the foot soldier, and the misericorde Shift Journal — at least when its attention is turned beyond the contentious arena of autism politics – is the unarmed aerial surveillance vehicle offering, hopefully, the lay of the land and an idea of what’s over the horizons.

For starters then, and to close what’s necessarily a quick and dirty hello to you all, here’s Andrew from this site’s de facto keynote entry, Emergence:

Autism and Asperger’s rights represent the third wave of genetic justice. Civil rights, the first wave, established the language, strategy and tactics for creating social change. Women’s rights and gay rights manifested integral aspects of the social structure conflict between matrifocal and patrifocal frames of reference, championing the rights of all peoples. The neurodiversity movement heralds the hidden, central theme of changes underway. The physical, neurological and behavioral features of autistic and Asperger’s children and adults are confounding to a society unaware that these individuals are the third wave of a massive social movement.

Unwarranted Conclusions and the Potential for Harm: My Reply to Simon Baron-Cohen

Rachel Cohen-Rottenberg — Wed, 21 Sep 2011 05:00:34 +0000

I want to thank Simon Baron-Cohen for taking the time to respond, in his September 10th post on the Autism Blogs Directory, to one of my early pieces on autism and empathy. I am very gratified that he did so.

Unfortunately, I found his response quite troubling. While there are a number of points that concern me, I’m going to focus on the aspects of his piece that speak directly to the most pressing issues.

The problematic nature of the test instruments

My first concern is that while Simon points to studies proving empathy and theory of mind deficits in autism, he does not address any of the many valid critiques of the test instruments themselves. For example, he chose to respond to a piece on the Empathizing-Systemizing (E-S) theory that I wrote over two years ago, when I was newly diagnosed and at the very beginning of formulating my thinking on the issue, rather than speaking to my recent systematic critique of the numerous flaws and biases in the Empathy Quotient (EQ) test or to my earlier piece on the Theory of Mind test. Both critiques discuss serious problems with the primary assessment tools on which his conclusions are based. If he would like his work to be better informed by the ways in which autistic people experience our sensory and emotional lives, and by the ways in which the test instruments fail to take account of the complexity of our experiences, I invite him to read both pieces, along with numerous other critiques and personal accounts on the Autism and Empathy website.

Simon also fails to mention that the false belief test used for the past 30 years to assess theory of mind in autistic children relies upon verbal interaction and language processing, areas in which autistic people are understood to have serious difficulties. In fact, in a 2005 paper, Morton Ann Gernsbacher and Jennifer L. Frymiare point out that the syntactic form of the questions posed by the test is one of the most complex in the English language. The authors go on to cite a study showing that performance on false belief tests correlates with language ability in children with and without autism. In fact, when autistic and deaf children are given a false belief test administered visually rather than verbally, they score higher than non-autistic hearing children: “If one creates a false drawing task that tests theory of mind without reliance on language, one finds that children with autism and children with deafness actually outperform children with normal hearing (Peterson, 2002).”

The misleading nature of the term “cognitive empathy”

My issues with Simon’s work go far beyond the problematic methodology of the test instruments, however, and extend to his use of the term “cognitive empathy” to describe an inability to read and to interpret nonverbal signals. If, as Simon asserts, “people with autism are very capable of an empathic response” when those around us verbalize (or otherwise make clear) their feelings, then our difficulties lie not in the area of “affective empathy,” but in the area of what he calls “cognitive empathy.” By this reasoning, Simon’s theory of autism as an empathy disorder rests on the latter term.

To make clear the misleading nature of the term “cognitive empathy,” a brief summary of Simon’s definitions is in order.

In The Empathy Quotient: An Investigation of Adults with Asperger’s Syndrome or High-Functioning Autism, and Normal Sex Differences, Simon and his colleague Sally Wheelwright draw on a definition of cognitive empathy as “using a ‘theory of mind’ (Astington, Harris, & Olson, 1988; Wellman, 1990) or ‘mindreading’ (Baron-Cohen, 1995; Whiten, 1991).” In Theory of mind in normal development and autism, Simon defines the term “theory of mind” and specifically describes it as a core component of humanity that is impaired in autistic people:

A theory of mind remains one of the quintessential abilities that makes us human (Whiten, 1993). By theory of mind we mean being able to infer the full range of mental states (beliefs, desires, intentions, imagination, emotions, etc.) that cause action. In brief, having a theory of mind is to be able to reflect on the contents of one’s own and other’s minds. Difficulty in understanding other minds is a core cognitive feature of autism spectrum conditions. The theory of mind difficulties seem to be universal among such individuals.” (Baron-Cohen, 3)

In his response to my post, and in numerous other pieces of writing, Simon asserts that both theory of mind and cognitive empathy rely upon an ability to see and to read nonverbal signals. If a person can’t do so, but relies upon verbal language or another form of communication, then that person has an impairment in theory of mind and in the cognitive empathy that depends upon it, resulting in a deficit in “one of the quintessential abilities that makes us human.”

It’s my contention that calling a physical inability to see and to interpret nonverbal signals a failure of any kind of empathy is to make an unmerited interpretive leap. After all, people who are blind cannot see and interpret nonverbal signals — they rely upon spoken language and/or Braille text — and yet, to my knowledge, no one has alleged that blindness is a low-empathy condition. Blind people come to understand the mental states of other people through other means, just as autistic people do. And yet, for an autistic person, a problem seeing and interpreting visual phenomena — and the necessity of taking alternative routes to acquiring the information expressed by such phenomena — is the basis for defining autism as an empathy disorder.

Please note the double standard at work.

Making a processing disability an empathy disability

When it comes to reading nonverbals, some sighted autistic people report not being able to see the signals at all. Others, like myself, receive a great deal of information from the eyes and face, but cannot parse the signals separately or intuitively. Perhaps we are really talking about the same thing here; after all, if I can’t separate the signals, the net effect is that I can’t see them as signals in the normal sense of the word. In any case, in my own experience, the problem is that all of the information from the eyes and face comes in very quickly. And while I cannot translate any of the more subtle nonverbals and use them in real time, my affective empathic response is quite acute. So, while I always understand that something is up, I may not always be able to discern exactly what it is at that very moment.

My visual processing of nonverbal signals is exactly analogous to my auditory processing of verbal speech: if you put me in a sound-rich environment, in which multiple conversations are going on at once, I can physically hear the sounds and the vocal tones, but I cannot separate the words from one another in order to understand and respond to them. The message becomes garbled.

No one has ever suggested that, because of my difficulties with auditory processing, being unable to understand what someone says to me verbally in a noisy room is evidence of low empathy. But when, because of my difficulties with visual processing, I can’t understand what someone says to me nonverbally, it’s adduced as prima facie evidence of a condition defined by low empathy.

That is a most illogical and unscientific conclusion.

If I cannot see nonverbal signals or parse them in real time, that is the sign of a visual processing issue, not the sign of an empathy disorder.

If I have to devote nearly every ounce of processing energy I have to decoding the words someone says to me, and therefore cannot afford to divert it for receiving visual information from the person’s eyes and face, that is the sign of an auditory processing issue, not the sign of an empathy disorder.

If, when I go to the market, I cannot stop and ask after people’s welfare because I have to focus on getting my shopping done before the sensory overload becomes disorienting and painful, that is the sign of a sensory processing issue, not the sign of an empathy disorder.

And if, when bombarded by sensory and emotional information, I find myself unable to express my empathy in real time and respond in any kind of conventional way, that is the sign of an information processing and communication issue, not the sign of an empathy disorder.

To define any of these issues as the signs of an empathy disorder is to take a physical disability and raise it to the level of a failure of humanity.

Hurt feelings, oversimplifications, and The Science of Evil

Suffering is nearly always the consequence of ascribing an inborn dearth of humanity to any child born to two human parents. And this is why any assertion that autistic people are born with a deficit in a core component of humanity is so terribly, terribly troubling to me.

I’m not talking about someone hurting my feelings, as Simon implies. What I’m concerned about are ill-conceived definitions and unwarranted conclusions that have the potential to cause tremendous suffering for autistic people at the hands of the larger world.

So, when Simon takes processing and communication difficulties and makes them evidence of an empathy disorder, then I have a problem.

And when, in a post for the Autism Blogs Directory, his words do not reflect the manner in which he describes our capacity for affective empathy in his latest book, my concerns only increase.

Consider the following: In his September 10th post, he provides a chart to explain the way that he profiles autistics and psychopaths in his recently published popular science book The Science of Evil (entitled Zero Degrees of Empathy in the UK). The chart in his blog post shows psychopaths and autistics with profiles that are a mirror-image of each other: psychopaths are positive for cognitive empathy but negative for affective empathy (they can intuitively read how people are feeling, but they don’t care), while autistics are negative for cognitive empathy and positive for affective empathy (we can’t intuitively read how people are feeling, but once we understand that a person is upset, we’re upset, too).

However, the information on this chart does not accurately represent the autistic profile that Simon delineates in The Science of Evil. For example, in a matrix in the latter part of the book, one finds that the profiles of psychopaths and autistics are not mirror images of each other; psychopaths show the same profile as in the blog post, but the autistic profile is negative for both cognitive and affective empathy (Table 1: Distinct Profiles of the Empathy Disorders, 154).

In fact, in contrast to his statement in his post that “people with autism are very capable of an empathic response,” The Science of Evil is relentless in its portrayal of the autistic capacity for affective empathy as highly impaired. In order to illustrate the nature of Asperger’s Syndrome, for example, Simon introduces a 52-year-old adult named Michael, whose dream “is to live in a world without people, where he can have total control.” Michael not only fails to read nonverbal signals, but “does not know how to respond to someone else’s feelings,” even when they are explicit (99).

The book does not differentiate between Michael not knowing what to do and not having an affective response at all.

The book does not explore the possibility that Michael may have long since shut down his emotional responses because of severe empathic and sensory overload, fear, anxiety, shunning, loneliness, bullying, despair, and other life experiences common to autistic people.

The book does not explore the possibility that Michael dreams of being alone because he seeks to comfort himself, in the midst of acute difficulties to which the world is largely oblivious, with a fantasy of control.

The book does not explore the possibility that Michael systemizes to an extreme degree in order to exert control over an extreme intensity of empathic and sensory experience.

And the book does not provide the story of Michael as only one example of the complexity of response among autistic people. It presents Michael as representative. Nowhere does Simon narrate any scenario in which any autistic person shows any affective empathic response to the feelings of another person. In fact, he does the following:

1. He asserts, without qualification of any kind, that for people with Asperger’s and people with classic autism, “Other people’s behavior is beyond comprehension, and empathy is impossible,” placing us all on the zero end of the empathy scale (117).

2. He then attempts to redeem autistic people as “Zero-Positive” (rather than “Zero-Negative,” which is reserved for psychopaths) because our “empathy difficulties” are associated with “having a brain that processes information in ways that can lead to talent” (citing the work of the savants Daniel Tammett, Derek Paravicini, and Peter Myers), and because “Zero-Positive” individuals are responsible for innovations in technology, science, mathematics, and other “systemizing” fields (96, 106-107, 122). Of course, he thereby leaves out the vast majority of autistic people who have no savant gifts and no special talent for innovation in any field at all. Hundreds of thousands of us therefore lose the already dubiously redemptive “Positive” label.

3. He goes to great lengths to insist that people with Asperger’s develop a moral code not because we are informed by an empathic response to others, but only out of a drive to systemize. When others act unethically, he writes, people with Asperger’s leap to the defense of the injured party — not because we are moved by empathy for the other person, but because unethical behavior “violates the moral system” we have “constructed through brute logic alone” (emphasis mine) (123). In other words, we’re simply upset that the rules have been broken.

Of course, this explanation rather begs the question of why anyone without an empathic response to the difficulties of other people would construct a moral code in the first place.

4. He characterizes people with classic autism as viewing their parents as “nothing more than a vending machine” to serve their desires. He thereby places people with classic autism outside the field of both empathic and ethical response, calling them “Morality-Negative” (119, 154).

And then he asserts in a post on the Autism Blogs Directory, four months after the publication of his book, that people with autism are, in fact, “very capable of an empathic response” — an assertion that appears nowhere, explicitly or implicitly, in the pages of The Science of Evil, published on two continents, and reviewed by critics the world over.

When someone writes a popular science book that will be read by far more people than any post on any blog, and in that book fails to address the depth and complexity of autistic experience, then we have a number of potential problems on our hands.

This is not about anyone hurting my feelings. It’s about the perpetuation of stereotypes and oversimplifications that, in my opinion, have the potential for tremendous harm. Consider the possibilities:

Autistic people describe our empathic experiences in detail, only to be told that we have such low empathy that we are the last to know it.

Autistic people protest abuse and ill-treatment, only to be told that we can’t understand other people’s motives and intentions, much less respond to them appropriately.

Autistic people are treated without empathy because other people believe that we have none ourselves.

Autistic people face lives of substandard care, isolation, and abuse because we are considered to have been born without a core component of humanity.

Autistic people lose opportunities for love, for friendship, and for caregiving work because people believe that we are incapable of them.

Autistic people lose our sense of who we are because we have to endure a constant and unrelenting barrage of messages that tell us that we are something else.

No, this is not about hurt feelings. It’s about the lives of people with classic autism. It’s about the lives of people with Asperger’s. It’s about the lives of people all along the spectrum. And it’s about the vulnerability, the rights, and the potential suffering of hundreds of thousands of living, breathing, fully human beings.

Rachel Cohen-Rottenberg blogs at Journeys with Autism, and presides at Autism and Empathy.

Unwarranted Conclusions and the Potential for Harm: My Reply to Simon Baron-Cohen appears here by permission.

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

[image via Flickr/Creative Commons]

Introverts: Denizens of a Social Ghetto

Zygmunt — Mon, 12 Sep 2011 14:54:11 +0000

When we say the word ghetto, we generally think of rap, thugs, and crime. What we usually think of is a modern economic ghetto, a neighborhood where all the poorest people live and can’t afford to leave.

I would be bold enough to suggest however, that true introverts live in a social ghetto. We don’t fit in and are forced to live as misfits and outsiders on the margins. Most extroverts barely even seem to realize that we exist. We are pushed aside into a separate ‘neighborhood’ where we live out an isolated existence. Our state of existence is one of social poverty.

Growing up and even into college, I had to fight off resentment whenever extroverts complained about relationships and other forms of social connection I hadn’t even the luxury of aspiring to. I understood that these people lived in another universe and that there was no way I could hope to make them understand that I had truly lived most of my life at the bare subsistence level. Even if I could explain my situation to the other person, the response might be bewildered pity or possibly even contempt, but never understanding. Part of the torture is that I couldn’t even really talk to anyone about my situation.

Over years, a lot of my energy had been focused on merely surviving. It makes long term planning very difficult for me to this day. Not long ago, I was bewildered whenever someone asked me questions about marriage, or having children. That was all so distant as to be completely off my map. The asker, usually a girl, would see my deer in the headlights look and conclude I was weird or just stupid. To me, stable social relationships and settling down was a thing that the Accepted liked to talk about. It had no relevance at all to my life.

Every encounter I had with normal people became akin to a clash of understanding and values sooner or later. Usually sooner. Our expectations of life were on different planets. They were counting on a comfortable life and a family. I was hoping for survival. I could very well be in the same economic bracket as the person to whom I was talking yet clearly I was in some way impoverished. Truly I lived in another place altogether from these normal people, a social ghetto of sorts.

On the internet, I’ve been discovering more and more people who grew up in the same neighborhood that I did and I’m enjoying it very much.

As a final note:

The first ghetto, Il Ghetto, was not an economic ghetto. It was a holding area in the city of Venice where all the Jews in town were forced to live. These Jews were often quite economically wealthy, but their social unbelonging led them to experience another, equally oppressive form of poverty.

Zygmunt blogs at Kingdom of Introversion (and elsewhere).

Introverts: Denizens of a Social Ghetto appears here by permission.

[image via Flickr/Creative Commons]

related: Subsistence of the Soul

related: The Mark of Cain

The Empathy Issue Is a Human Rights Issue

Rachel Cohen-Rottenberg — Fri, 09 Sep 2011 05:00:17 +0000

Empathy. For most people, the word is synonymous with humanity.

The American Psychological Association calls empathy “the trait that makes us human.” ¹ According to author D.H. Pink, empathy is “a universal language that connects us beyond country or culture. Empathy makes us human. Empathy brings joy…. Empathy is an essential part of living a life of meaning.” ²

In the popular mind, in scientific journals, and in autism-related books and websites, the canard that autistic people innately lack empathy (or have deeply impaired empathy) continues to hold sway. Of the innumerable reiterations of this trope, a few representative instances will have to suffice:

According to Vilayanur S. Ramachandran and Lindsay M. Oberman, “[T]he chief diagnostic signs of autism are social isolation, lack of eye contact, poor language capacity and absence of empathy…^{” 3}

In his latest book, Simon Baron-Cohen writes that autistic people have “abnormalities in the empathy circuit in their brains” resulting in “zero degrees of empathy.” ⁴

And in a truly shameless display, physician Roy Q. Sanders, Medical Director of the Marcus Autism Center in Atlanta, GA suggests that “teaching empathy to someone with autism/Asperger’s is almost like teaching a pig to sing — it is a waste of time and annoys the pig (at least most of the time).” ⁵

I could adduce an abundance of further examples, but these assaults on our humanity are almost too much to bear.

—

In late June of this year, I began publishing posts and links on the website Autism and Empathy: Dispelling Myths and Breaking Stereotypes. In order to find material, I’ve been searching online using the terms autism and empathy. The results are often excruciating, especially when they consist of choice words like the following:

“It’s as if they do not understand or are missing a core aspect of what it is to be human; to be and do like others and absorb their values,” says psychologist Bryna Siegel, director of the Autism Clinic, University of California, San Francisco. “Their worlds are more barren, their social world is very distorted, and they come out of their world not when you want them to, but when they want to.” ⁶

Such statements tend to flow rather freely in the autism world, and when I read them, I always find myself wondering why some professionals do not come out of their world and into the world in which we live.

Much formal research employs similarly dehumanizing imagery, albeit in rather colder, more clinical language — language that betrays a propensity to see the world in vitro rather than in vivo:

“Contrary to some previous accounts, both apes and some children with autism do appear to understand actions as goal directed if not fully intentional; that is, they
understand that others have goals, persist toward them, and perceptually monitor the process. This means that both of them show some skills of social learning, though not as powerful or pervasive as those of human 1- and 2-year-olds. However, neither apes nor children with autism follow the typical human developmental pathway of social engagement with other persons… In general, it seems that neither apes nor children with autism have — at least not to the same extent as typically developing human children — the motivation or capacity to share things psychologically with others.” ⁷

Placing apes and children with autism in the same category, in contradistinction to “human 1- and 2-year-olds,” generates nary a whisper of protest or the slightest expression of disgust from the research community — with the sterling exception of Morton Ann Gernsbacher, whose brilliant piece On Not Being Human speaks eloquently to the issue:

“Sixteenth-century theologians, Victorian anthropologists, and 20th-century Nazis are not the only ones who have deemed various groups of humans ape-like or nonhuman; some current-day American psychological scientists are just as guilty of this crime… [I]n a recent New York Times “notable book of the year,” an internationally acclaimed psychological scientist segregated autistic people from other humans and placed them ‘together with robots and chimpanzees.’” ⁸

Can you imagine the outcry from within the scientific community — and from the general public — if any researcher attempted to place African-Americans and apes in the same category?

Where is the outcry on our behalf?

—

I continue to wade through the debris, searching for the gems that describe us in the full light of our humanity. I find those gems in abundance, but the search is still a difficult undertaking. I sometimes feel as though I am facing down a never-ending procession of men and women, armed with prestigious titles and advanced degrees, all asking the same question: “Are autistic people truly human?”

After all, if empathy is synonymous with humanity, then spending millions of dollars and entire careers researching the question of whether autistic people have empathy is nothing more than a thinly veiled attempt to address the question of whether we are human at all.

—

In August, I was posting links to research when I felt an overwhelming sadness. Why should we need to adduce evidence to prove our humanity? I thought. Why is it simply not a given?

And so I must ask outright: Why is the question of our humanity the fodder for so much scientific endeavor? And why has the very act of posing that question not caused a storm of protest in defense of our human rights?

—

In a few weeks, I will return to graduate school to pursue a second master’s degree. For some time now, I’ve intended to make a critique of the research on autism and empathy my area of study.

Truth be told, the prospect of spending three years reading about our allegedly deficient humanity fills me with apprehension. But in the service of the greater good, I am willing to address the issue. I am willing to engage in the tedious process of revealing the potential biases of the test instruments. I am willing to critique the conclusions drawn from studies — studies, I might add, that measure such things as how often autistic children anthropomorphize abstract objects moving across a computer screen, or whether autistic adults respond “appropriately” to a series of exaggerated facial expressions outside of any meaningful context. I am even prepared to argue the wisdom of attempting to measure the complex spiritual, emotional, psychological, and physical experience of empathy with recourse to questionnaires and brain scans.

But I am also beginning to rethink the entire project. After all, doesn’t approaching the issue from the standpoint of scientific critique give credence to the idea that science should engage the issue of our humanity as a subject of study?

—

I know that it’s difficult for non-autistic people to understand us. I know that, in general, it’s difficult to understand anyone across the divide of difference. But isn’t that the divide that empathy must bridge?

Where is the empathy that should restrain psychologists from creating dehumanizing caricatures and engaging in stark generalizations?

Where is the empathy that should engender humility about the things that science cannot touch?

Where is the empathy that should cause professionals and laypeople alike to respond with outrage against the dehumanization of autistic people, to protest the injustices done, and to cry out in the face of the devastating impact of these injustices on our hearts and on our minds?

In this day and age, if mainstream researchers engaged in studies purporting to prove that gay and lesbian people are incapable of love, that African-Americans lack intelligence, or that Jews are especially good with money, the outcry from both the scientific community and the general public would be loud and long. The prejudices that such research lays bare would be met with outrage.

I’m still waiting for our day.

—

Sources

¹ Defining the trait that makes us human. APA Monitor, 28(11), 1, 15. Bailey, S. (1994)

² Pink, D. H. A Whole New Mind: Why Right-Brainers Will Rule the World (2nd ed.). New York: Penguin Group, 2006.

^³ Ramachandran, Vilayanur S. and Oberman, Lindsay M. Broken Mirrors: A Theory of Autism. Scientific American. October 16, 2006.

⁴ Baron-Cohen, Simon. The Science of Evil: On Empathy and the Origins of Cruelty. New York: Basic Books, 2011.

⁵Sanders, Roy Q. Experts Reflect on Parenthood Finale. Accessed September 4, 2011.

⁶Stars ‘CAN-do’ about defeating autism. April 10, 2002. Accessed September 4, 2011.

⁷ Tomasello, Michael; Carpenter, Malinda; Call, Josep; Behne, Tanya; Moll, Henrike. Understanding and sharing intentions: The origins of cultural cognition. Behavioral and Brain Sciences (2005) 28, 000–000.

⁸Gernsbacher, Morton Ann. On Not Being Human. Association for Psychological Science (February 2007), Volume 20, No. 2. The “internationally acclaimed psychological scientist” is Steven Pinker, who wrote in The Blank Slate: The Modern Denial of Human Nature (New York: Viking, 2002), “Together with robots and chimpanzees, people with autism remind us that cultural learning is possible only because neurologically normal people have innate equipment to accomplish it.”

Rachel Cohen-Rottenberg blogs at Journeys with Autism, and presides at Autism and Empathy.

The Empathy Issue Is a Human Rights Issue appears here by permission.

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

[image via Flickr/Creative Commons]

Reflections on a Changing World

Guest — Mon, 01 Aug 2011 14:00:51 +0000

The neurodiversity movement got its start in the early 1990s, when a few autistic people got together on mailing lists and dared to imagine a day when they would be seen as equals in society. Their conversations were, at that time, largely unknown to the world. The prevailing stereotypes about autism were so extreme that the very existence of autistic people who were capable of having such conversations was generally thought impossible.

It took another decade, and the advent of blogging, before pro-neurodiversity sites burst onto the Internet in large numbers. Some of these sites had modest aims, looking to dispel the worst of the prejudices by simply showing the public that autistics could indeed write coherent articles and have intelligent conversations. Others had more ambitious goals, posting specific, in-depth criticisms of society’s attitudes toward autistics and setting forth a detailed civil rights agenda. Most fell somewhere in the middle.

How much progress has our society made, since then, toward acceptance of its autistic citizens? While many are still without jobs, we’re seeing more efforts to enforce antidiscrimination laws and to include autistic applicants in diversity hiring programs. Although the schools still have a long way to go, they’re slowly learning how to educate our children in respectful and inclusive ways. There’s not nearly as much of the ugly rhetoric that was commonplace just a few years ago. As with other minority groups that have become integrated into mainstream society, just seeing autistic people on a regular basis — both in online venues and in schools, workplaces, and neighborhoods — has brought about more understanding, while showing up ignorant prejudices for what they really are.

Because so many beneficial changes have taken place in recent years, some neurodiversity sites already are outdated. Aspergian Pride, which was created in 2004 to highlight stories about the accomplishments and positive qualities of autistic people, has become an antiquated reminder of a time when many otherwise reasonable folks thought there weren’t any to be found. Accordingly, the blog is now being closed, although the site will stay up for historical purposes. Many thanks to all who have contributed their time, energy, and wisdom to bring us this far.

Reflections on a Changing World was recently posted on the Aspergian Pride blog and appears here by permission.

Soon: An Urgent Communiqué of Vital Import …

Mark Stairwalt — Thu, 21 Jul 2011 15:11:35 +0000

A Wild Communiqué Appears!

Floating in over the transom this morning came an inspired, rambling, two-part missive, part neurodiversity manifesto, part invitation to a flash mob, part lulzsensical call-to-arms — and part heartfelt plea for integrity and respect on the part of Autism Awareness Washington. Apparently situated in the American Northwest, the author is identified variously and whimsically, and writes from behind whatever anonymity the secure email service Hushmail is able to offer these days. While sent not to Shift Journal but to a friend of the site, it seemed appropriate to dispense with the usual permission-seeking and share simply on the authority of editorial fiat. Followers of Lulzsec and Anonymous will notice some similarities in tone and style; followers of pop singer Ke$ha may be reminded of the droll mock-seriousness (or is it?) with which she declares, “We are taking over. Better get used to it.”

The long and the short of it is that this anonymous communiqué is a romp, though one with a message, and put together by an individual who has more than passing familiarity with the issues and personalities of the neurodiversity movement. More power to Faerie Prince Omega, the anonymous leadership of the Cortical Executive Functionaries, and the Neo-Typicals of the Divergent Spectrum. The sooner they – the sooner we – take over, the better.

Autism Research, Prenatal Testing, and “The Autistic Genocide Clock”

Guest — Tue, 19 Jul 2011 05:00:45 +0000

As originally posted, this page was a response to an article published on MSNBC.com on Feb. 23, 2005, in which Dr. Joseph Buxbaum, a prominent research scientist, predicted that genetic research on autism could lead to a prenatal test within 10 years. A countdown timer posted at the top of this page, entitled “The Autistic Genocide Clock,” kept track of the time remaining in the 10-year period after the date of that article. A discussion of eugenics followed.

The world has changed considerably since then. It seems hard to believe now, upon rewriting this article in July 2011, that just six years ago many influential decision-makers seriously advocated eugenic eradication of the entire Autistic population — a minority group estimated to include more than 60 million human beings worldwide. The mainstream media and the public policy discussions about autism became saturated with imagery straight out of medieval changeling myths. Autistic people were commonly described as empty shells, less than human, devoid of empathy, and incapable of contributing to society. Some public charities intentionally promoted these atrocious stereotypes as a strategy to gain more funding for genetic research.

But two things happened that derailed their plans to develop a prenatal test and to put it into routine use. First, the genetic factors involved in autism proved to be more complex than they had anticipated. Second, and more significantly, the public conversation changed. Autistic self-advocates and others who were concerned about its destructive tone launched efforts to shift the focus of the discourse. Policymakers listened, and the conversation moved into the realm of disability rights. The media became more aware of their ethical obligation to present accurate and respectful information about autism. The discourse began to focus on the actual needs of Autistic people — community services and supports; better health care; and equal opportunity in schools, the workplace, and throughout society.

Although the cultural and political landscape has changed in many ways for the better since this page was created, the history of that time period should not be forgotten. It is a sobering reminder of just how quickly, even in a modern democracy such as the United States, media-driven mass hysteria can push any minority group to the brink of genocide. It also stands as a testament to the determined efforts of the many decent people who put large amounts of time and hard work into pushing back. We would be wise to remember the admonition, often attributed to Thomas Jefferson, that “eternal vigilance is the price of liberty.”

This post appeared recently under the title Autism Research and Prenatal Testing at the Ventura33 Neurodiversity Page. An early snapshot of the page (with the clock intact and still running) can be viewed here.

[image: Salvador Dali's The Persistence of Memory]

Update: Psychopaths, Sociopaths, ASPD and ASD/Aspergers: Recap and Resources

Scott Shea — Thu, 14 Jul 2011 05:03:34 +0000

A few years ago there was a rage among psychologists and sociologists looking at the prevalence of sociopaths/
psychopaths in the workplace. I got caught up in that and did a ton of research; at one point it was going to be my master’s thesis. As a wrap up of my series on psychopaths, sociopaths & narcissists in the workplace I wanted to collect the links to the previous articles as well as some other links to books and articles on the subject.

To recap my main points: People with Antisocial Personality Disorder (ASPD) like psychopaths/sociopaths look for certain types of victims. Those on the Spectrum often have traits that play right into the ASPD individuals hands and potentially make us targets more often than others. I discuss some of the characteristics you can spot that might mean someone is ASPD and how to protect yourself as well as note that those with narcissistic personality disorder may seem similar to an ASPD but in reality have different motivations and are easier to protect yourself.

Introduction
Identification
Protection
Narcissists

Other Resources:

Wikipedia for Robert Hare, preeminent researcher on Psychopaths

Hare’s first book: Without Conscience: The Disturbing World of the Psychopaths Among Us
Hare’s Second book (with Paul Babiak): Snakes in Suits: When Psychopaths Go to Work

Paul Babiak; industrial psychologist who studies bullying and ASPD disorder in the workplace

Mask of Sanity, a PDF of Hervey M. Cleckley‘s groundbreaking work on ASPD

Martha Stout‘s book The Sociopath Next Door

Article: Red Flags for workplace sociopaths
Article: How to Deal with a Sociopath
Article: Coping with Psychopaths @ work
Article: Workplace Psychopaths: how to deal with them
Article: What is the difference between a narcissist and a sociopath?
Article: The Borderland of Narcissism and Sociopathy

Scott J. Shea is the proprietor of Job Sink, offering career advice and exploring employment issues and workplace difficulties faced by those on the autism spectrum.

Update: Psychopaths, Sociopaths, ASPD and ASD/Aspergers: Recap and Resources, the fourth in a series of four, appears here by permission.

[image via Available Images]

Narcissism, ASPD and ASD/Aspergers

Scott Shea — Thu, 14 Jul 2011 05:00:49 +0000

Narcissistic people and Sociopaths/Psychopaths are very similar in their effects on the ASD population in that dealing with either is stressful and can damage our self-esteem and career. However they are different behaviors and that means we need to consider the narcissist slightly differently.

I would argue that it is possible to work and work well with a narcissist with fewer protections than the person with ASPD. If it helps, consider that the narcissist’s actions result from a need to prop themselves up rather than from a compulsion to harm others. As one article put it “The less validating you are, the less worth you have for the narcissist. The less exploitable you are, the less worth you have for the sociopath.” It is harder to limit ASD exploitability than it is to increase your validation of another. Therefore you can ‘play the narcissist’s game’ a lot easier by simply feeding into their need for validation. The more they value you the more they will protect you.

Still they can be dangerous so keep these things in mind:

1. A narcissist will blame others for their failures; be sure you have your bases covered.

2. Set boundaries on what work you can/will take on; a narcissist will likely delegate everything they are supposed to do.

3. Narcissists will mirror successful behavior of others; your actions can help influence them.

4. Limit your time spent with them in person to reduce stress.

5. Limit how often you talk about yourself or anyone that is not the narcissist when they are present.

6. Use a third party to maintain your grounding when dealing with them or you may lose your personality.

Moving them out of your life is also an option but not nearly as necessary as with a sociopath/psychopath. If you feed into their ego, provide results and take care of your mental state it is possible to have long and rewarding careers near narcissists. Often their self-centered attitude and ego will move them up the corporate ladder and those that support them can reap the rewards too; not just money but challenging projects as well.

Scott J. Shea is the proprietor of Job Sink, offering career advice and exploring employment issues and workplace difficulties faced by those on the autism spectrum.

Narcissism, ASPD and ASD/Aspergers, the third in a series of four, appears here by permission.

[image via Available Images]

Protecting Yourself Against Psychopaths in the Workplace

Scott Shea — Thu, 07 Jul 2011 05:00:54 +0000

Once you suspect that you are working with or for (and in some cases above) a sociopath/psychopath/ASPD person the next step is protecting yourself. This protection goes beyond just keeping your job and includes making sure you remember who you are; i.e. do not start to question yourself.

A general strategy of all of these types is to make sure that you believe their reality. Consider it like the movie Gaslight where they are trying to get you to believe them and question yourself. These tactics will help you retain who you are and what you hold:

1. Set up an independent person that you can check in with; preferably one with no contact with the suspected sociopath. Robert Hare in his book Without Conscience: The Disturbing World of the Psychopaths Among Us mentions that he and his staff have to constantly do this or they get taken in by the criminals they interview. So if trained psychologists have to have this outlet it is likely the rest of us do too.

2. Along those lines use your company’s Employee Assistance Program to bounce your concerns off of.

3. Write copious contemporaneous notes. You can use the information there to remind you of the reality of what was said and when as well as give evidence to counter claims against you.

4. If your workplace rules allow it, record conversations with the person. There is no expectation of privacy in the workplace so unless your company policy forbids recordings this is perfectly alright. Even if there is a policy make inquiries as to the rules for doing so. Again, the recordings will help ground you and provide proof if a confrontation arises.

5. Send follow-up e-mails about conversations and CC in your boss or others. “These are my take-aways from our meeting of June 15th at 2:00 p.m.”

6. Avoid them if you can. If they are on a project you are on see if you can transfer off.

7. File a sealed letter with HR containing your suspicions with the instructions that it only be opened later at your request. If that does not work then get the letter notarized so that it will show a history of suspicion from the start.

8. Work with your supervisor to set and enforce boundaries concerning tasks, time etc. Even if your boss is cozened by the person you will have an easier time reminding your boss of the boundaries than the suspected individual.

9. Keep answers short and to the point with the suspected person. Any extraneous information will be used against you.

10. Try to keep all conversations with the person three party or more so there are witnesses.

11. Remind yourself that you are sane … every day if you have to.

It may seem like a lot of work but remember what and who you are protecting: you and your career. These people do not play by any set of rules even though you do. Protect yourself within the rules.

Scott J. Shea is the proprietor of Job Sink, offering career advice and exploring employment issues and workplace difficulties faced by those on the autism spectrum.

Protecting Yourself Against Psychopaths in the Workplace, the second in a series of four, appears here by permission.

[image via Available Images]

Spotting Psychopaths in the Workplace

Scott Shea — Thu, 30 Jun 2011 05:05:33 +0000

One of my favorite books is Fried Green Tomatoes at the Whistle Stop Cafe: A Novel. There is a chapter that starts out talking about how a complete stranger is the only person to spot that an antagonist is an inhuman monster. When asked how he knew which of the antagonist’s eyes was fake he responded “It was the only one with a glimmer of human compassion in it.” If only it were so easy in the working world.

Psychopaths, sociopaths, Antisocial Personality Disorder (ASPD), whatever you want to call it, people like that can do well in the workplace. Someone like this is able to chameleon themselves into appearing like a strong leader, an achiever, a results oriented person and sometimes everyone’s best friend … well, best friend to everyone above them. In reality they weave a series of lies and collateral damage into a time-bomb that goes off after they leave.

One time I worked with a woman who showed all the tendencies of a business psychopath. Treated the people below her like crap, lied even when it suited no purpose, back-stabbed people (I was the first victim) left and right all with the appearance of getting results. Her lies were so blatantly obvious that I thought anyone would see through them. Her biggest whopper was that she had sold a company to Microsoft, made millions and did not need to work. Aside from there being no record of the transaction on Microsoft’s legally required disclosures, her car was fifteen years old and barely worked; her ‘work’ outfits were not exactly Bloomingdale’s and when doing business with Microsoft at our company she could not produce the name of one person there who knew her. Still, people loved her. After she killed my professional advancement in that company I switched to another department with my complaints falling on deaf ears. I was in the wrong and just jealous of her.

A year later I did have a little satisfaction when one of the people who told me I was off my rocker came back and apologized saying that they had no idea she was like that. This was after she torpedoed them at another company both had moved to with fanfare.

I began to notice I had a particular antipathy towards people like this. I think part of it is because psychopaths are likely to target people on the ASD spectrum as easy prey. We are usually held as less trustworthy to begin with due to our social issues and have a problem with confrontation. Also with our difficulty in thinking strategically we can be dismissed as “missing the big picture.” I tend to clash often and fervently with business psychopaths and narcissistic workers alike. They are very similar.

This is not a scientific study but my mental checklist for determining if someone is at least a possible business psychopath; it certainly should not take the place of Hare’s checklist and proper study. Instead use it to know if you need to put special guard up. Here are the characteristics that I have seen cluster around these people:

1. The lies and often grandiose lies (one guy told a tale of helping France revamp their postal system even though he had never been to France, does not speak French, knew nothing about letter/parcel delivery and France seems like they would do this on their own; not contact a guy in Los Angeles)

2. When challenged, especially on trustworthiness, makes dismissive attacks on the person challenging them.

3. Treats people “below them” (subjective) very poorly even when there is no cause — even a flimsy cause.

4. Delights and brags about cruel behavior to others; especially animals, children, women etc.

5. If male, can be a major philanderer … not like one affair but several; often at the same time.

6. Claims they are a big picture, leader or other buzzword of the day for someone who is an executive of a fortune 100 company whenthey are not.

7. Uses business buzzwords a lot; often to disguise their lies or to appear like they are in the know.

8. Makes moves every year or two (a sign their BS is catching up to them).

Like I said, this is certainly not a scientific list and can get you in to trouble if you based hiring decisions or work interactions solely on it. Instead it provides a framework to be concerned and to start looking at protecting yourself.

Scott J. Shea is the proprietor of Job Sink, offering career advice and exploring employment issues and workplace difficulties faced by those on the autism spectrum.

Spotting Psychopaths in the Workplace, the first in a series of four, appears here by permission.

[image via Available Images]