Author Archives: Mel Baggs

About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

Autistic AAC Users

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This is going to be a list of articles or websites by autistic people who use augmentative communication a significant amount of the time. There’s a few things I am not trying to do by writing this page:

  • I am not trying to do the “Wow, look at the amazing autistic specimen that writes!” zoo exhibit crud.
  • I am not trying to say that autistic people who largely use writing to communicate in the offline world, are somehow more autistic, or more correct about autism, or better than, or worse than, other autistic people.
  • I am not trying to agree with every single thing written by an autistic person who uses augmentative communication.

What I am trying to do is deal with a situation where people are willing to accept that I use aug comm successfully, but believe that I am unique, or rare, or the only one, or something else like that. I’m none of the above.

Some of the people on this list use aug comm exclusively. Some use it only some of the time. Some use it rapidly, some slowly, some different speeds at different times. Some can read out loud what they type, some cannot. Some started out able to speak and lost that ability either gradually or rapidly, some have never spoken, some cannot use speech in a communicative way, and some have always spoken but have never been comfortable with it for many uses. Some use physical or emotional support to point and some do not, many started with it and continued without. Some look at the keyboard, and some, regardless of number of fingers they use, do not. All of these things can be mixed and matched. So there’s a lot of diversity here.
Links in bold are the person’s website, which may contain many articles.

People and their websites and articles
Misc. People

Richard Attfield

Roy Bedward

Larry Bissonnette

Jamie Burke

Elana Connor

Robert Cutler

Kim Duff

Tyler Fihe

Peyton Goddard

Lincoln Grigsby

Eve Hanf-Enos

John Jameson

Sharisa Kochmeister

Schlomo Lowinger

Eugene Marcus

Tito Rajarshi Mukhopadhyay

Sarah Nettleton

David Newton

Tom Page

Nick Pentzell

Jeff Powell

Sandra Radisch

Chammi Rajapatirana

Heather Rossignol

Sue Rubin

Nick Russi

D.J. Savarese

Jeff Seeger

Jenn Seybert

Joel Smith

Sarah Stup

Ian Wetherbee

Organization Websites

Books

  • Understand: Fifty Memowriter Poems (David Eastham, 1985)
  • Wenn ich mit euch reden könnte … Ein autistischer Junge beschreibt sein Leben. (Dietmar Zöller, 1989)
  • Ich gebe nicht auf: Aufzeichnungen und Briefe eines autistischen jungen Mannes, der versucht, sich die Welt zu oeffnen. (Dietmar Zöller, 1992)
  • “ich will kein inmich mehr sein” – botschaften aus einem autistischen kerke. (Birger Sellin, 1993)
  • A Child of Eternity (Adriana Rocha, 1995)
  • I Don’t Want To Be Inside Me Anymore: Messages from an Autistic Mind (Birger Sellin, 1995)
  • Ich Deserteur einer artigen Autistenrasse. Neue Botschaften an das Volk der Oberwelt. (Birger Sellin, 1997)
  • Through the Eyes of Aliens: A Book About Autistic People (Jasmine O’Neill, 1998)
  • Lucy’s Story: Autism and Other Adventures (Lucy Blackman, 1999)
  • I Had No Means To Shout! (Charles Hale, 1999)
  • Ich Igelkind. Botschaften aus einer autistischen Welt. (Katja Rohde, 1999)
  • And Love Was All He Said: Growing Up Autistic (Michael J. O’Reilly, 2000)
  • The Light Within (Lincoln Grigsby, 2001)
  • Buntschatten und Fledermäuse. Leben in einer anderen Welt. (Axel Brauns, 2002)
  • The Vial (Chammi Rajapatirana, 2002)
  • Embracing the Sky (Craig Romkema, 2002)
  • Autismus und Körpersprache. Störungen der Signalverarbeitung zwischen Kopf und Körper. (Dietmar Zöller, 2001)
  • Caught Between Two Worlds: My Autistic Dilemma (Thomas Page, 2003)
  • “now you know me think more” (Ppinder Hundal, 2003)
  • Silent Words: Forever Friends (David Eastham, 1990)
  • Beyond the Silence: My Life, the World and Autism (Tito Mukhopadhyay, 2000)
  • Wasted Talent: Musings of an Autistic (Krishna Narayanan, 2003)
  • The Gold of the Sunbeams And Other Stories (Tito Mukhopadhyay, 2006)
  • Do-Si-Do With Autism (Sarah Stup, 2006)
  • The Road Trip: Life With Autism (J. Kevin Vasey, 2005)

Anthologies (may have both aug comm users and others as contributors):

  • Autism and the Myth of the Person Alone (Douglas Biklen, 2005)
  • Sharing Our Wisdom: A Collection of Presentations by People within the Autism Spectrum (Gail Gillingham and Sandra McClennan, 2004)

Comments from when this was a page, not a post:

  1. June 26, 2006 at 10:57 am
    […] This is the permanent page on this blog I’m using for this at the moment. […]
  2. Ann says:
    June 26, 2006 at 4:29 pm

    THANK YOU THANK YOU !!!! I will be definitely linking to this page from my website. With all these resources hopefully I wont be constantly bugging you with all my questions !! smile.

  3. Linda says:
    June 26, 2006 at 9:06 pm

    I was entranced by your story while driving home from the library. I work for a young lady (15) who essentially does not communicate verbally, but uses a communication device (she hates that name – she calls it her talker) using a reflective dot to activate her choices. She is wheelchair bound, quadreplegic, yet totally aware of the world around her and VERY definite about her likes and dislikes. Her Dad is her primary caregiver, and I did not know what LOVE was until I met the two of them. Everyone is different, and Vive Le differance! I also care for my 90 year old mother who is legally blind, and post-stroke – she can verbalize her needs and wants totally with no reservations. I am so impressed with your intelligence.

  4. June 27, 2006 at 8:41 am

    […] Amanda is one of those autistics that certain people don’t believe exist or can communicate – she is an autistic person who is typically referred to as ‘low functioning’ just like my own daughter. This is because she doesn’t speak. When you hear Amanda, you will hear her fingers on her keyboard. Here is a list of other autistic people who are non-verbal and considered ‘low functionning’. […]

  5. Michael says:
    August 30, 2006 at 5:43 pm

    I was very excited to come across your page. My son is seven (eight this month) and we learned he was able to spell and was extremely intelligent when he was 3 1/2. He is not able to speak but has been using a letter board and a Dynavox since then. We have many transcripts from his neuroligic music therapy sessions expressing frustration, anger, sadness and a wicked sense of sarcasm. Without the FC we wouldn’t know what a great child we have and how gifted all of us are for him.

  6. Samuel says:
    April 13, 2007 at 11:45 pm

    Hello, I just stumbled upon this great AAC resource for Mac OSX called Verbalize and thought you might like to check it out. http://www.apple.com/downloads/macosx/productivity_tools/verbalize.html

    I just posted a low cost text to speech idea using Verbalize, you might be interested in checking out, on my new blog. alltogether.wordpress.com

    From, Sam

  7. Craig Chadwick says:
    June 22, 2007 at 3:26 pm

    I posted earlier under old email craigwchad@frys.com. Anyway I’m so angry I could spit. The county found some funding to purchase my son augmentative comm device. Just notified that the State is now saying the communication device is not a “health or safety” issue and they are not going to fund it. Anybody dealt with that? How you shame bureaucrats like this or educate them into doing the right thing?

  8. Craig Chadwick says:
    June 22, 2007 at 3:37 pm

    ps I’m now mrplutodog@peoplepc.com That old account kept bouncing in and outgoing email.

  9. June 22, 2007 at 3:38 pm

    In places with regulations like that, your speech pathologist/doctor/etc have to justify it specifically in terms of its use in medical communication situations, and show that other communication methods will not work.

  10. June 22, 2007 at 6:02 pm

    Craig, I don’t blame you for being so angry. Access to some means of communication is a fundamental human right, without which the person will find it immensely difficult to advocate for themselves in obtaining all their OTHER fundamental human rights. That alone should be enough to justify funding, especially if it can be shown that a given augmented approach clearly works better than other approaches at least in certain contexts. It sounds like there needs to be some policy changes to make it easier to obtain communication-related funding for people who need it.

    I know your most immediate concern is getting your son’s needs met NOW. But I can’t help ALSO thinking of the larger picture. Is there a way you can get together with other parents and with adults who use augmented communication to work together in advocating for policy reform? Not limited to autistic children and adults — ALL users of augmented communication.

  11. Craig Chadwick says:
    June 28, 2007 at 8:05 pm

    When you say “in terms of its use in medical communication situations”, I hope you don’t just mean in terms of visits to the doctor’s office. Even narrowing it to the “medical communication” thing which leaves out a lot of health/safety issues, I would think it ought to be broader than that, especially in terms of prevention and maintaining good health when you can’t reliably communicate other ways.

A couple handy lists for dismissing autistic viewpoints.

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Too autistic to know what you’re talking about. Not autistic enough to know what you’re talking about.
  • Low-functioning
  • Non-communicative
  • Savant (if used to show that whatever your talents are, you’re really clueless)
  • Lacking empathy
  • Lacking understanding of others’ perspectives
  • Black and white thinking
  • Ineducable
  • Mentally retarded
  • No Theory of Mind/Mind-blind
  • Too emotionless
  • Incapable of thought
  • Empty
  • Vegetative
  • Lacking self-awareness
  • Perseveration
  • Rigidity
  • Lots of sentences starting with “S/he will never…”
  • Appears to be able to do this, but can’t really.
  • Too pure, gentle, sweet, and passive to ever object to anything
  • High-functioning
  • Asperger’s
  • Not really autistic at all
  • Misdiagnosed
  • Malingering
  • Savant (if used to use your talents to dismiss your claim to being an autistic person)
  • Attention-seeking
  • Manipulative
  • But you’re toilet-trained, aren’t you???
  • Clearly highly intelligent
  • Verbal
  • Too concerned about others’ problems to be autistic
  • Too caring to be autistic
  • Too concerned with what people think of you to be autistic
  • Pretends to be unable to do this, but really can.
  • Clearly capable of complex, conscious thought
  • Too self-aware to be autistic
  • Self-diagnosed
  • Too angry to be as gentle, sweet, pure, passive, and otherwise emotionally one-dimensional in favor of the person speaking, as real autistic people.

The interesting thing here is that if you actually go back through what has been said to dismiss the viewpoints of autistic people, you’ll see these things being used simultanenously. You’ll see that a person will use back-handed compliments about a person’s ‘intelligence’ and ‘verbal skills’ to distance that person in people’s minds from the stereotype of autistic people, may even question openly whether the person is autistic, and then at the very same time will say that the person engages in black and white thinking, lacks empathy, and clearly has no compassion. This of course happened to Michelle Dawson recently, but it’s been going on for a very long time, as has my desire to document it in a list in this format.

Another very interesting thing about these list is the way that the apparent meaning behind the rhetoric changes depending on which side is being used. If a person is argued to be too autistic to understand what is going on, the implication is that autistic people cannot understand what is going on at all, and therefore always need non-autistic people to make the decisions about us. If a person is argued to be not autistic enough to understand what is going on, the implication is that only someone more autistic would be qualified to speak on the matter (in which case, the non-autistic person has even fewer qualifications themselves).

These implications actually oppose each other, but they serve their purpose. Their purpose is not to illuminate anything useful about the people they are being used on. Their purpose is instead to be a fancy way of shutting autistic people up. Since many people, particularly people unfamiliar with autistic people, are swayed by arguments like this, it becomes a handy way to defend anything that autistic people oppose in large numbers. Simply declare us, one way or the other, unfit to comment, and go on saying whatever you were saying to begin with. The whole point seems to be to push us out of the way.

Of course, non-autistic people are not the only ones to use this kind of rhetoric. There are plenty of autistic people who do so as well, but that takes on a slightly different form, and I think I’ve written a fair bit about that already.

NPR show time seems definite now.

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It looks fairly definite. They’re doing a show on All Things Considered tomorrow (Monday, June 26), and you can find the times and stations on this website.

Interviewed should be Michael John Carley, Jim Sinclair, me, and possibly others.

The blurb on the site says “Life can be difficult for autistic children. But imagine being diagnosed as autistic when you’re an adult. Many autistic adults say they aren’t hoping for a cure — just acceptance.” I want to clarify for anyone who comes here from there, in case it isn’t made clear on the show, that neither Jim Sinclair nor I were diagnosed in adulthood, but that they might be talking about Michael John Carley or other people who were interviewed.

“On Edge” by Cheryl Marie Wade

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God forbid we human beings should ever have to get up close and personal with our unwieldy, messy, smelly humanness. In every way possible, this culture’s rules and values distance us from the realities of our own bodies in all their glorious imperfection. Just flick on the TV any time of the day or night and you’ll be bombarded with messages about the necessity of looking perfect and smelling better. It’s presented not as an option, but an obligation. Of course we want to hasten death; of course we want to make it easier for Cripples to die. Out damn spot. Out.

I don’t think it’s just coincidence that this urgent, zealous drive to give us more ways to opt out of life comes at a time when more and more of us are visible, living in community, being “in the face”, so to speak, of able-bodied assumptions about normal. And not just the us that can almost pass as AB, but those of us whose bodies are wildly uncontrollable, we of the drooling, spazzing, claw-handed variety of Cripple. And instead of trying to fade into the nooks and crannies as good Cripples of the past were taught to do, we blast down the main streets in full view, we sit slobbering at the table of your favorite restaurant, we insist on sharing your classroom, your workplace, your theater, your everything. The comfort of keeping us out of sight and out of mind behind institutional walls is being taken away. And because there is no way for good people to admit just how bloody uncomfortable they are with us, they distance themselves from their fears by devising new ways to erase us from the human landscape, all the while deluding themselves that it is for our benefit.

(Emphasis in the quote is mine.) That’s a quote by Cheryl Marie Wade in On Edge, that describes a frightfully real phenomenon. When it is not an option to lock us up and separate us from society (and it still often is, but it is for less of us), people, with the same prejudices that lock us up to begin with, try to justify our quick-as-possible death.

Moreover, people are terrified of the things I described in my last post. Terrified in particular of having bodies or minds that don’t stay tidily in control, in a society that is right now far more of a control-freak society than it was when Wade wrote that article.

When Wade (who also wrote the great poem A Woman With Juice) wrote that article, I was still in the out-of-sight out-of-mind category that she describes. Now, I’m not. But I think a lot of people would be more comfortable if I, and everyone else like me, were. I don’t think all of them think of themselves as hating us. I think we make people highly uncomfortable merely by existing in their presence. We bring up too many questions, remind people of too much, and break too many rules devised for a society being run without us. And, as she mentioned, since nobody is willing to admit their discomfort, they do a lot of very nasty things while distancing themselves from the nasty things they are doing.

That’s of course not the only reason. Wade goes into many other reasons in the article. But I’ve noticed that merely being plonked into a society that is not designed for me, that in fact is actively hostile to people like me, is not the same as living in an inclusive society. It’s not the same as living in a society where people have shed their prejudices about us, or where we have enough power and respect to avoid some of the more awful fates (including re-institutionalization) that are accepted for us by others. It’s just a change of address. And it’s just the beginning.

I have to wonder how much of these attitudes are behind the widespread acceptance of the murders of Tracy Latimer, Charles-Antoine Blaise, Katie McCarron, and so many others, and this latest attempted murder of a little girl with cerebral palsy.

Someone pointed out in my post about Katie McCarron that it’s not just beautiful, young people who shouldn’t be murdered. It’s also those of us who aren’t cute anymore, those of us who have ‘severe behaviors’, drool, need help going to the bathroom, or whatever else is different about us. I think people are more comfortable with the murder of a disabled person than a non-disabled person, but also more comfortable with the murder of one of the disabled people with an ‘undesirable’ body than those who are closer to standard-issue. A lot of effort has gone into distancing Katie McCarron from a stereotype that she has never come close to fitting. But those of us who do fit it more than she does (of which I’m definitely one), are real people too. The misplaced discomfort and disgust we are greeted with should not rule our life and death.

Fear of disability is not what it seems.

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Two nights ago I had a long conversation with a friend.

She was in bed because she’s got a pressure sore forming on her butt. I was lying on a mat on the floor because I couldn’t hold my body upright and think at the same time.

We were talking about the stuff that normally gets called disability, or impairment, or whatever the current term is. The differences in our bodies, that are medicalized, and defined as horrible fates worse than death and so forth.

We were talking about our total lack of fear in the idea of acquiring any particular currently-pathologized condition.

She talked about how “chronic, intractable pain” is an everyday reality for her, and it’s only going to get worse with time. I talked about going twenty years without a diagnosis of chronic pain that resembles central pain in its nature and intensity. I talked about how people who’ve been in much less pain for much shorter periods of time have tried to tell me I don’t understand pain.

I started laughing, because that seems like an absurd idea to me. My friend said, sarcastically, “Oh, but you’re laughing. If you’re laughing, you can’t be in any pain.”

Then we got into migraines. I’ve had one for a few years straight now. My friend said, “It’s documented that people sometimes kill themselves over migraines, so that’s got to be considered one of the nastier forms of pain.”

My friend recently had a knee injury and was unable to get out of her wheelchair at all (normally she can stand for brief periods) without extensive assistance. She talked about how that isn’t a particularly awful thing in and of itself. She also once went through extreme spinal surgery and only got a day’s worth of pain drugs afterwards.

I freeze in place on a regular basis, sometimes to the point where even my eyes are not under my control, right down to pupils staying at a fixed, large size and my eyes not moving at all. I know very well what it’s like to have zero voluntary movement, and total awareness of surroundings, and I’m not afraid of it.

I also know what it’s like to not comprehend anything going on around me, to be unable to form what most people consider thought (although I think their definition is far, far too narrow to encompass all thought), to “lose” extended amounts of time because things were not encoding into memory, to understand things only on a perceptual level with no abstraction or what non-autistic people would call “comprehension” or “cogitation”, to understand things only in the moment and not have a continuous memory going on, to understand bits and pieces of things on bits and pieces of different levels, and so forth. I know what it’s like not to even be able to put together the intent to “understand” things in a relatively typical way, because the knowledge of that intent simply isn’t there, all that “makes sense” is sensation.

I even know what it’s like to have seizures every few seconds. And from the effects of various supposedly “anti”-psychotic drugs, I know what it’s like to hallucinate and lose touch with reality. I know what it’s like to vomit several times a day, or continuously for several hours in a day. I know pain so intense that I can’t move, and can’t think of anything other than pain.

These are things I know. I know them short-term, I know them long-term. I know them as states that I am able to partially exit for certain periods of time, and I know them as states that I am mandated by my body to stay in until they’re over, if ever. I know the extreme fluctuations in all of these areas that I go through daily, and the gradual moving from one area to another that takes place over time. These things are or have been significant parts of my life. My friend and I talked about all these things from my life, and all these things from her life. Between the two of us, we have internal-body experiences that cover a pretty wide range physically and cognitively. Neither of us are afraid of physical or cognitive disability, of pain, of confusion, of immobility, or of illness. We’re not particularly afraid of even the things considered the most devastating.

There are things we both fear, though. And they have nothing to do with the internal experience of any of these things.

I fear being put in an institution, of any kind, whether a large institution, a group home, a nursing home, or a psychiatric ward. I fear boredom because people might assume I’m not there and park me next to a blank wall for years. I fear people not bothering to prevent or treat things like infections and pressure sores. I fear people who claim to love me deciding to kill me to spare me the unendurable suffering they imagine I am experiencing. I fear bad staff. I fear being assumed dead or unconscious when I freeze (this has happened). I fear not being given a workable communication system when one is available. I fear being treated as a non-person.

The trouble a lot of people seem to have, is they can’t distance these legitimate fears, from fears of the state of being itself. They act like the above are a natural consequence of being configured in a certain way, and that the best way to avoid that is to prevent at all costs that configuration, instead of preventing at all costs those things from being able to happen to people.

My friend and I are not afraid to acquire various conditions that are currently pathologized. We’re aware we’re likely to acquire at least some of them within our lifetimes, even if only in old age. We’re afraid of discrimination, including deadly forms of discrimination. The solution here is not to fix our fear or “acknowledge our feelings”, but to fix the problems that cause legitimate fear.

The trouble I have in talking about these things, is that for people who do not adequately separate out how a person is from how they are being treated, this sort of thing often results in responses like “Oh how horrible, I or my child or someone else is in all this danger, this is a horrible horrible fear, how can we fix me or my child or whoever until they won’t be in all this danger?” Wrong answer. Work to fix the danger, or you will have solved nothing at all except temporarily your own emotional state.

The trouble is, people make decisions, including policy decisions, based on these nebulous fears of being disabled, rather than the real and concrete situation that disabled people are treated like crap. People actually believe that their feelings on this are neutral in nature, and of course, since they are feelings, impossible for anyone to validly question. But these feelings come from somewhere, and without looking at disability as a political thing rather than an issue of personal individual suffering and uselessness and whatnot divorced from any context, we will continue to have awful things happening to us all the time, and people will continue to fear becoming like us.

What started the conversation was a person we know offline who has acquired a new condition over the course of the time we have known her. She has always been extreme in both her ableism and her refusal to even contemplate thinking politically about disability, more extreme than most people. Her entire identity has been tied up in the work (paid and unpaid) that she can’t do anymore. And she’s currently mired in some of the worst kinds of self-hatred because she appears to have transferred her bigotry towards disabled people (which she never acknowledged as such, and would probably be insulted by that description, but it’s true) to herself, and is busy thinking of herself as the useless burden on her family that she thinks of disabled people as in general. And she does not even have the solace of understanding disability in a broader sense than her own feelings (that she believes come out of nowhere and are therefore not things she can change), because while she is capable of thinking politically in that way, she fears it and refuses, believing it would make her miserable. There’s nothing I or anyone else can do about this, but I hope one day she’ll realize that the kind of thinking she fears would actually both be closer to reality and make her less miserable and fearful over the long run.

Efficiency and frugality

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In response to one of my earlier posts on interpretations of my eye gaze, Allison Cummins wrote:

As an NT, I use facial expression (as Amanda noted) and body posture when interpreting gaze.

In Western culture, we tend to prefer the vigourous, dynamic agent. Firm handshake, upright posture and all that.

In Nigeria (I lived there four years), where all that tension and vigour would be a waste of scarce calories and generate unwanted heat in a hot climate, people are much more relaxed. While most Canadian NTs would expect someone to stand up, look you in the eye and shake your hand firmly, a Nigerian is likely to remain seated with her head propped up on her arm, more or less looking toward you, as she proffers one limp hand to be shaken.

Many Canadians would interpret this not as frugality, but as laziness and inattention.

Amanda has a frugal-type body posture. She uses support (floor; elbows on knees) and has a facial presentation that could be unkindly described as “slack.” For me, this overall picture suggests someone who isn’t particularly present in her own body or for the other people with her, whether because she’s daydreaming or incapable of thought. Eye gaze is interpreted in this overall context.

Of course, knowing better, I can make a point of disregarding certain signals and focussing on other ones. But people have to know better to do that… otherwise they will defer to their unconscious readings.

This idea of frugal body postures reminded me of one of my own observations about the way I do things, formed when I was just starting to realize I had an outward appearance and that people were judging me based on it. I noticed that very little of me moves at any given time, in relation to the background. In fact, only the bare minimum amount of me moves voluntarily at any given time.

I say voluntarily because much of the time I have the standard autistic mannerisms as well as tics, both of which can look like a lot of movement. (As a very rude professional said the other day, in gesturing at me to make uninformed pronouncements about stuff I needed without acknowledging my presence, “See all that movement?”) But that’s background. In the background, there is either movement or stillness, but it’s still background, something my body is doing, probably for a good reason, but not something I’m voluntarily doing to achieve a tangible end.

When I say I use the minimum movement possible, I mean against that background. Whether I’m rocking or not, I still use the fewest body parts possible in order to type with my hands. I have noticed that non-autistic people (at least, in America) are in a constant state of what to me would be gross overuse of my body: Even when they are doing something with their hands alone, their faces and all possible body parts are involved in generating assorted signals or something. They seldom use the “resting” postures that my body assumes when that particular body part is not doing anything (the postures that apparently get interpreted as “blankness” or even signs of neurological injury).

But this exact kind of efficiency and frugality that I use, is one of those things that would fall under the heading of an autistic-style life skill. Many of my behavior programs, of course, were designed to try to get me to stop looking like this. That requires monitoring so many body parts that it’s really impossible, and even when I do achieve some semblance of it, the effect isn’t to make me look NT, it’s to make me look really weird with pasted-on expressions and such that are fairly incongruous and would probably scare the crap out of a lot of people who read standard body language.

me attempting to look NTish and only succeeding in a scary-looking facial expression

This is an example of me doing my best to do NT-style posing for a picture.

This obviously doesn’t work too well, and I know that once I get one thing (like the facial expression) then the rest of my body goes back to doing whatever it was doing. I can’t wrestle the whole body into submission at the same time, and even my face isn’t doing a natural smile at all. Even if I could look like that all the time (which I can’t), what’s the point? It’s wasteful, inefficient, and doesn’t even make me pass particularly well (the goal in the training that got me to do things like that was passing, it was never achieved). Compare it to the hand-flapping pictures on my other website, and ask yourself which one looks happier, and more natural for me. Hint: It’s not this attempt at a smily thing.

This efficiency, though, is exactly what is needed in order to control a body that must first be found, like any other sensory input, and then controlled, one piece at a time. Trying to train someone out of it is training someone out of… efficiency. That’s not a good thing to train someone out of, but it seems to be the focus of a lot of “social skills” sorts of things. A special ed teacher (for whom I have no respect) once told me that her goal was to make it so that when her class went out in public, they “didn’t look like a bunch of retarded kids being taken out in public”. So she as much as admitted she wasn’t teaching anything functional, only cosmetic. (And trust me, they all looked autistic, even when she was done with them.)

It’s not just movement, of course, that demands this sort of efficiency. It is also thinking, and perceiving the world. Wastefulness in these areas leads to overload, and overload leads to pain and shutdown. It is harder to describe the skills it takes to deal with thought and perception, because they are not as concrete and overtly visible as movement. But they are very similar things: Don’t waste what you’ve got.

All of these skills are pretty much the antithesis of how autistic people are taught to deal with the world.

For instance, many programs for autistic people rely on basically memorizing large amounts of symbolic information about the world. That is horribly inefficient. It requires perceiving what is in front of you, converting it into symbolic information, calling up the correct symbolic information on the basis of whatever it is that you’re doing, cross-referencing that with a whole bunch of other symbolic information, and then converting all those symbols into action or words. By the time you’ve done all that, the response may create as many problems as a non-response would, and you haven’t even had the chance to check in on intention. And you’ve used up a whole lot of mental energy on generating all those symbols (whether said symbols are words or something else).

Similar things happen when communicating with an autistic person. If you want me to do something, the most efficient thing to do is bring me the objects used in doing that thing. However, most people don’t do that. They announce things like “Would you like to do this?” which requires deciphering what they’re saying, remembering what they’re talking about, and responding in yet more words, and then in actions, which requires starting various body parts moving on my own with no appreciable cues to physical movement. Or they wave things back and forth in front of my face so fast that I can’t possibly see whatever it is they’re trying to show me, and the slower I am to respond, the faster they jiggle the object around. Then they’re surprised when I shut down and can’t do anything, or melt down and scream.

The combination of pressure to respond and total incomprehensibility is never good, and using various long and winding routes to get the information in is not good either. There’s a very particular side to side motion that people do, where the bottom part of something stays still and the top part is moved rapidly and rhythmically from side to side. It makes the object utterly incomprehensible to me yet conveys a desire that I respond to the object, and makes the object impossible to ignore. And people wonder when I start banging my head. Hand me breakfast and I’ll eat it, start talking about breakfast and waving oatmeal boxes around in the air and you’ll drive me up a wall trying to keep up with everything and generate the desired responses.

And yet things like that are considered among the “best” of what there is to teach autistic people. What autistic people actually need to learn, is ways of doing things that do not take up so much space cognitively. This, of course, is yet another thing with no fancy names, money to spend, promises of normalcy (in fact the person will almost undoubtedly look less standard), resemblance to anything medical, or appearance-saving shortcuts that are really the long way around. So it’s, yet again, unlikely to catch on in the “we’re doing something doing something doing something doing something” mentality that pervades the autism world. Much better, apparently, to bend autistic people in strange unsustainable directions or force us to take the long way to do things half as well as the short way, if at all.

Another attempted murder, a call for restraint and responsibility

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Another mother has apparently tried to kill her disabled child, near to where Katie McCarron was murdered. Stephen Drake of Not Dead Yet has written a press release called Disability Advocates Call For Restraint and Responsibility in Murder Coverage, urging people reporting on these things not to constantly harp on the idea that parents don’t have enough support, that disabled people are just inherently hard to raise without wanting to kill us, and that the sort of parents who end up killing us are really just wonderful parents who love us.

In response to the Autism Society of Illinois’s claim that saying all this garbage is looking at the bigger picture and the context, the press release says (emphasis in the quote is mine):

No, we cannot ignore the broader context if we have a new attempted murder on our hands. Services and supports have been what they’ve been for quite awhile in Tazewell County and other parts of Illinois. Services didn’t suddenly get worse between the alleged murder of Katie McCarron and this newest incident.

We’d suggest that what has changed is a barrage of irresponsible media coverage and equally irresponsible advocacy. Researcher Dick Sobsey has documented an increase in the murders of children by their parents in Canada in relation to well-publicized and sympathetic coverage of the murders of children with disabilities. Articles about the alleged murder of a person with a disability should not contain more about the disability than about the victim as a person. More space should be devoted to grieving family members than sympathetic friends of the accused killer.

The Autism Society of Illinois and the ANSWERS group should rethink their strategy as well. Mike McCarron, Katie McCarron’s grandfather, has written that he feels abandoned and betrayed by “advocates.” To him and his family, the parade of “horror stories” about autism are offensive and painful. These groups need to ask just for whom they are supposed to be advocating. Is it the grieving McCarron family? They don’t feel supported. Is it children like Katie? Then why do they blame the victim? Or is it Karen McCarron, the alleged killer?

I agree completely with this. I have never ignored context, but I simply don’t think that the context of murders like this is a murderer-serving combination of the worst myths about raising a disabled child and the worst myths about so-called mental illness. I’ve read some of that research of Dick Sobsey’s, but when I bring it up, people are unduly incredulous. But really. When you make things like this sound even remotely okay, understandable, or excusable, what you get, is more people doing it. If you don’t want more people to do things like this, you take your campaigns for better services and whatever else you’re looking for, and you go off and do them somewhere else, in a way where they cannot even be mistaken for standing on the backs of murdered disabled people.

By the way, it’s been confirmed in court records that the little girl in question was given an overdose of pills, to “make her go to sleep and never wake up”. In that article, you can begin to see the “What loving parents, can’t imagine why they’d do it, but it’s really really hard to have one of Those People as a child” angle starting already. Please don’t do anything to perpetuate the hate speech.

Eyeballs, redux.

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A recent blog entry and its responses have shown one of those strange perceptual ambiguities in other people that autistic people frequently run up against. It seems that there are two ways in which many aspects of autistic people’s appearance can be taken. I’ve often wondered if this is why people flip so rapidly back and forth between calling me “Hey retard” and calling me a “genius,” that both stereotypes involve roughly the same physical appearance, interpreted two different ways.

My last blog entry on eyeballs focused on my reaction to other people’s eyeballs. This blog entry on eyeballs focuses on other people’s reaction to my eyeballs.

I’d commented that Erik Nanstiel called the look in my eyes a blank stare. Other people commented that I appeared pensive, lost in thought, or thoughtful. I don’t actually think that either one of these says anything about my mental state at the time that people are saying them, but these are not new concepts to me. Like everything else, there are two fairly extreme reactions my eyes get.

When I was first born, people said I had owl eyes, that looked “deep” and made them wonder what was behind them. (I have very large eyes, I’m not sure if that’s part of it or not.) When I was a bit older, before I understood language, but when I was certainly recording sensations that I would later understand as language, I often heard people describe my eyes as “thoughtful”. When I was old enough to understand, people often made the same sorts of comments about my eyes: Thoughtful, deep, spiritual (what on earth “spiritual” eyes look like are anyone’s guess, mind you), and other adjectives that seemed to mean there was some kind of depth of thought (or that I was “thinking” rather that perceiving anything) that was visible by looking at my eyes.

The same eyes, at the same times, have been described in a completely opposite light. People have said that they look blank, like there’s nobody home. Someone once tried to make eye contact with me, because she thought she could read people’s mental states by looking them in the eye, and broke off because she said the total emptiness in my eyes was too scary. She was shaking. People have told each other in my presence that all they had to do was look at my eyes to know that there really wasn’t anybody “in there”. In fact people have used the look in my eyes to wonder whether I was even alive or not. And, of course, the Nanstiels of the world have already registered their comments with words like lonely and vacant.

Now, these are the same eyeballs we’re talking about here. These are not two separate sets of eyeballs, nor, as apparent from the reactions to the same sets of photographs, two separate times that people are looking at these eyeballs. I’ll break down some of the ways in which my eyes (and most of these are things that are true of many autistic people) actually differ from other people’s eyes in appearance.

In actual physical structure, my eyes are much larger (particularly in the sideways direction) than most people’s eyes, and at times I’ve also had eyelashes that enhance that particular appearance. This probably calls people’s attention to them to begin with.

My pupils are often more dilated than they’d be expected to be under any particular lighting conditions. When the rest of my body freezes, sometimes my pupils also freeze in size at very large and don’t respond to light. (These things have variously been interpreted as brain damage, seizures, intoxication, unconsciousness, and death, when people have commented on them. I’m sure there are assorted ways in which they unconsciously influence people’s perception of me as well.)

My eyes have never tracked objects in a typical way. I’m not sure how they do track them, but this has been medically noted since infancy and reconfirmed several times. I suspect that people who look at eyeballs pick up on this in some fashion, even if subtly.

Sometimes my eyes do not move at all regardless of stimulus. Sometimes they just don’t seem to move in any particular response to the stimuli that are being presented. Sometimes they move rapidly and involuntarily all over the place.

My eyes don’t always look symmetrical: Either the lid on one closes more than the other, or they point different directions. (I don’t notice or feel this.)

I don’t generally look right at people’s eyes if I can help it.

I usually use my eyes to look at things with, not to deliberately communicate information.

What I perceive visually doesn’t seem to be what other people perceive. Unless I deliberately look at things (and even sometimes when I try), I don’t see “Here is a bunch of named, distinct objects.” I see a whole lot of patterns, shapes, colors, and so forth. While I have no idea exactly what the difference in appearance is, I suspect that people who do automatically perceive objects in a typical way will move their eyes over them in a different way than I do.

Similarly, I don’t think I always point my eyes at things to look at them. At least, I seem to be able to shift my visual focus without shifting my gaze at all, over a fairly wide range. I’m sure this also leads to differences in where and whether I move my eyes.

When I’m using some other sense, my eyes are of course in standby mode, or picking up information without telling me about it yet.

I don’t always have a lot of facial expression, at least not the typical expressions that people look for. I have often suspected that people’s impression of eyes having an expression of their own, is partly a result of the face around the eyes. My face has one main expression, that it’s in the majority of the time, and it changes into other expressions for much briefer periods of time, and possibly more subtly, than non-autistic people’s faces usually do. (It also, like my eyes, does a bunch of involuntary movement at times that has nothing to do with my mood or intentions.)

I suspect that the combination of all of the above (most of which are common in autistic people, not specific to me, and some of which are probably also common in blind people) causes a general impression of difference from the norm, and people’s assumptions determine how that difference is interpreted.

The thing is, I’m not particularly lost in thought in any of those pictures, any more than I’m particularly vacant. In some of the pictures, I’m even very definitely watching the camera, but when I look at the pictures, my eyes aren’t pointed at it (in some other pictures, my eyes are pointed straight at the camera and I’m not looking at it). It’s certainly usually better for me to be thought of as “thoughtful-looking” than “not there at all,” but I don’t think either one has anything to do with what I’m actually doing or thinking. I am pretty sure I look the same way when I’m very intently carrying on a conversation with someone, focused on wholly external events, watching the person who thinks I’m thinking about something else, or other things like that.

This does seem to be one more area where there’s an appearance of an autistic person that is different from a typical appearance, and a lot more is read into it than there actually is. As far as I know, the above eyeball facts are what are actually likely to be going on at any given time. Whether I appear deep or vacant, thoughtful or incapable of thought, based on that, has very little to do with whatever’s going on in my head (seems to have more to do with whatever’s going on in everyone else’s).

Is this really neutral, everyday terminology?

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Let’s say a neurotypical (not just non-autistic, but neurologically typical) child is born. Call her Kate.When Kate is born, she can’t walk, talk, understand what is said to her, or feed herself. Being that this is the case, her parents are well-armed with early intervention and treatment strategies. She gets Breastfeeding Intervention, and later immense, unprecedented progress is made and she graduates to being spoon-fed. She gets Speech Therapy every day in the form of talking to her all the time in a particular specialized way designed to elicit interest, understanding, and speech. Her treatment also includes giving her interesting toys to treat her incredible lack of fine motor skills and to hone her perceptual skills and eye-hand coordination, as well as many other interventions.

These early intervention and treatment strategies are successful, and she eventually begins to walk, talk, and feed herself. But there is a lot she does not know about the world that she lives in. Beginning at the age of four, she is sent to a taxpayer-funded institution for several hours a day of intensive therapy designed to teach her about various aspects of the world. This treatment is wildly successful and in a few years she can read, write, add, subtract, and so forth, and is even capable of comprehending some amount of science and history.

When she is not in the institution, she is doing play therapy and music therapy. Play therapy consists of supervised play with other children who are also in play therapy to get their exercise, learn social skills, and learn more about how to function in the world they live in. She is dropped off once a week for one-on-one music therapy in which she is painstakingly taught the rudiments of the piano. She is, of course, highly limited in her ability to play the piano, but it is thought that this will be beneficial to her emotional and intellectual well-being. Sometimes she also goes to a day program called Girl Scouts with lots of other girls her age.

To teach her responsibility and daily living skills, there is an intervention at home called the Chores Method. Her parents delegate certain simple instrumental activities of daily living to her, such as washing the dishes, vacuuming the carpet, and cleaning her room. If she does not do these things, then a privilege such as watching television or going out to play with her friends is taken away from her.

When Kate is seven years old, the doctor discovers that she is lactose intolerant, a relatively common condition. This explains her crankiness and the regression and stomachache she experiences whenever she drinks milk. When this is treated, her behavior improves both at school and at home. Her parents view this treatment just the same as they view all the other treatments they have been through to get their daughter where she is today.

As Kate grows older, the treatments and interventions are changed to reflect her age and increased progress and maturity. As she reaches the transition to adulthood, she is given pre-vocational training and encouraged to think about what kind of job placement she might want.

She is also encouraged to choose between one of several residential placements. She ends up electing to move to a group home with two other adults who share the same apartment and support each other with paying the bills and daily living tasks. They receive extensive assistance at home from plumbers, electricians, and repair people who are all trained to do what is outside of these individuals’ capacity. Farmers grow, raise, harvest, and slaughter the food that the poor limited souls cannot grow for themselves, and truckers take that food to special facilities called Grocery Stores staffed by even more people. While they have undoubtedly made extensive progress since they were born, it clearly takes a lot of support just for these young women to get through their days and they are highly dependent on other people for their survival.

I am describing, of course, the life of a non-disabled middle-class American kid from birth to early adulthood.

Several people have told me that terms like ‘treatment’, ‘therapy’, ‘intervention’, and ‘symptoms’ are neutral terms when describing their autistic children’s traits and education. Or that these words are justified (for all aspects of their children’s lives, mind you) on the basis that their children have something on the order of lactose intolerance (which, when it happens to non-disabled people, never-gets called a ‘co-morbidity’ either).  Or that these words are basically no big deal.  If so, I would really like to know if they describe their non-disabled children in anything approaching this manner, or if they would appreciate being seriously described in most of these ways for every aspect of their own lives. Because I’ve rarely seen anyone do it.