What world are we talking about here?

A quote by an autistic person has stuck around for a long time in my head: I don’t get “lost in a world of my own” either. I don’t need to take a bloody compass with me when I am having a think.

The “in their own world” stuff has always been completely lost on me. When I first heard it, I thought people were talking about astronomy or something. But I hear it again and again, by people who are supposed to know something about autism.

The latest autism podcast is about moving your child up the autism spectrum. The problematic concepts don’t seem to stop with the title. The basic idea of autism is something like, “Here’s the triad of impairments. Here’s what we call low and high functioning for each one of them. Here’s some really odd ideas we have about what all this behavior means in the first place. Here’s how we act on those odd ideas to change the behavior to things more towards what we consider high functioning.”

But it’s one of the odd ideas I want to talk about.

They talk about a thing they call “our world,” and how they want to get autistic people “out of their own worlds” and into “our world”.

Some quotes (the bold used for emphasis is my own):

He wasn’t completely in his own world with the flapping or the swaying back and forth, like I’ve seen other kids.

Then:

A lot of kids are on the low end of the spectrum because they don’t have that communication piece, they don’t know how to get their wants and needs met, they’ve found their own ways to get out of our world.

Then:

Kids have a lot of ritualistic behaviors and that repetitive movement stuff because of a lack of understanding of what they’re supposed to do in the world, and when you increase their ability to communicate, and when you also increase you as something social in their life, then you start seeing that ritualistic behavior go down. Because they have more of an understanding for the world. […] So without the stress you stop seeing them in their own worlds with the repetitive movements, you start seeing them a little more in your world, less repetitive movements or ritualistic behaviors and more communication.

Okay… am I getting it correct that apparently when my body is moving in some repetitive way I’m supposed to disappear to some other planet or something? And I’m not understanding as much of my environment, or something? And if I stop moving in assorted repetitive ways, that’s supposed to mean I’m more engaged with… something or other?

Because that makes no sense to me. I’d almost start to cynically wonder if “in their own world” is a filler term used by people who have no explanation for something and therefore want to invent one, but I’d like to know what it’s actually supposed to refer to, because I really, really don’t disappear anywhere just because I’m rocking or flapping my hands or something.

I’ve asked people about this, and they’ve pointed me at people. And I’m somehow supposed to just understand by looking at people what this “own world” thing is that the people I’m looking at are supposedly in. Or it’s supposed to immediately convey a sense of urgency. And I don’t see interdimensional portals around most of them, nor do I feel urgent needs to feel urgent around them or something. So I’m going to ask again:

Where is this world we’re supposed to be in, and what does it have to do with flapping our hands and stuff? (As a bonus question, I guess, why would understanding my environment better supposedly have made me stop doing all the repetitive motions I never stopped?)

Autreat’s “Ask an NT” panel.

At Autreat, they had a panel in which non-autistic people could be asked questions, similar to the standard panels in which autistic people are asked questions at autism conferences. They transcribed it onto an IRC channel so that people not there could read and ask questions. Here’s one of the questions, and one of the answers:

JOEL SMITH (AUDIENCE MEMBER): ASKED PANELISTS IF THEY HAD PROOF OF THEIR NT DIAGNOSIS

CHLOE: (ANSWERING JOEL’S QUESTION NON-RHETORICALLY) NOT DIAGNOSED BUT IT IS CLEARLY THE WAY I OPERATE SO I AM COMFORTABLE IDENTIFYING MYSELF AS SUCH

That kind of answer is acceptable from non-autistic people. When autistic people say it, however, it’s not good enough. The default seems to be, non-autistic until proven otherwise.

I have, for reference, proof of my diagnosis, including a developmental disability waiver with “AUTISTIC DISORDER” written on it. I don’t, however, give it out. I do this on principle: People just as autistic as I am can lack a diagnosis (yes, really), and they have just as much of a potentially valid viewpoint on being autistic as I do. Moreover, whether my opinions are right or wrong does not always hinge on whether or not I am autistic to begin with.

Non-autistic people are not expected to prove that they are not autistic (even in some cases where they probably should be expected to).

Parents of autistic children are not expected to prove parenthood, in order to give opinions on autism (even in some cases where they probably should be expected to).

Even autism researchers seem to be granted an incredibly amount of immunity to genuine skepticism about who they say they are.

Yet somehow, with autistic people, it’s “How can you possibly say you’re autistic?” “Autistics shouldn’t be listened to on anything unless they provide proof of diagnosis.” “People are just pretending to be autistic so they can say these anti-cure things.” (When the only known instance I know of someone definitely pretending to be a “kind” of autistic they weren’t, and thus possibly suspect about any other claims they’ve made, is someone who was saying pro-cure stuff, which never gets questioned by these same people.)

So, while a few people have seen my proof of diagnosis, mostly those who have to, I’m unwilling to simply hand it out to anyone who claims that I’m not for real. That’s rude and an invasion of privacy to expect to see someone else’s medical records on demand when you have no medical connection to them and no reason (beyond disagreeing with them) to suspect they’re a liar. Nobody online ever questions that I get migraines, I noticed, and they’re even more subjective from the outside than being autistic is.

Edited to add:  Someone pointed out I should give this context.  A letter recently went out from a well-known autistic speaker to leaders in the autism community, urging that conferences receive proof of diagnosis, as well as possibly information about the person’s educational history, and other private, confidential information, before allowing people to represent themselves as autistic.  The letter also expressed skepticism about people’s diagnosis the later in life the diagnosis was.  Given that even those diagnosed in childhood may have their early records destroyed, given that even blatantly autistic people over a certain age were commonly missed for a whole number of reasons, and given that not everyone has the money or resources to seek a diagnosis, many in the autistic community view this as unfair.  The autistic man who asked the question of the NT on the panel had an early childhood diagnosis where the records were destroyed and does not want to be forced to produce an adult re-diagnosis in order to have his views listened to.  But this is a wider issue that affects the credibility and privacy of all autistic people.

Who thinks what about being autistic

In response to the NPR show, I’ve seen people (who must not have actually listened to the show), saying that it’s only auties who speak, or who are regarded as “high functioning,” who are happy with being autistic or oppose the idea of curing autism. As far as I’ve been able to tell, this isn’t the case.

There’s a lot of different opinions on curing autism, not just two, of course. And I don’t believe in the way the rest of the world divides us up into functioning levels, that is too simplistic and assumes there’s only one dimension to being autistic, it doesn’t even bear up under scrutiny. But if I were to take autistic people and how the world generally divides us, and take our opinion of being autistic, I really don’t think I’d see much correlation to the world’s false subtypes.

I’m going to post the following quotes, but with a bit of a disclaimer attached. I’ve found that aug-comm-using auties are often tokenized even within the autistic community. When we agree on a basic principle such as the way we think about being autistic, that can be used to say “See, we have those people too.” But an aug comm user would have to be pretty oblivious to hang around the autistic community for very long and believe that we are considered to be on equal footing with other autistic people. That’s one of many divisions that unfortunately still divides this community, in subtle and not-so-subtle ways. So if you see a post like this linked to as evidence that this is a wonderfully and totally inclusive community for all autistic people of all kinds, think again, we’re not, on many levels. But also think again if you hear that the “non-inclusiveness” is just that we don’t like the idea of cure and don’t understand “real autism” which is defined as autistic people who want a cure.

I’ll start the quotes with a quote from Cal Montgomery that sums up the point of this entire post in a way:

I don’t believe you can meaningfully separate autistic people into “high-” and “low-functioning” in the first place, but if you can it’s not by comparing their political opinions.

Some political opinions about autism:

I value my AUTISM above all else with which my life has been “gifted.” While I also have cerebral palsy and epilepsy and these are wonderfully special to me, and I often think being “unable to speak” is a blessing in disguise; none of these remotely match the total delight of being AUTISTIC.

I can see and hear people reacting to this by wondering “Is she serious or is she pulling our legs?” Well, wonder no more! I mean everything I have said and am about to say.

[…]

What do I see as the gifts that autism has given me? My incredible intelligence, unique insights, talent for improvisation, creativity in writing and music, wonderful memory, and awesome ability to teach and help others understand… I believe all of these are valuable “side-effects” of my AUTISM that far outweigh all of the “negatives”. I am who I am at least partly because of what I am, and that includes AUTISM and how it has gifted my life.

That was written by Sharisa Kochmeister, a woman with autism, epilepsy, and cerebral palsy. She was, until learning to type (which she now does independently), presumed to have an IQ of 10. The full text of what she said in the above presentation can be found at the Watch Our Words website.

Therefore, Autism is a friend, a comfort, a companion – albeit a rather annoying one at times, but so are all companions. It is also a protector, a buffer… And it’s who I am. Jim makes the statement that if it were possible to separate the autism from the person, and it were done, then what you would have left is not the same person you started with. In my case, it wouldn’t even be a person; it would barely be an entity, or alive without autism. i would virtually not survive. (maybe a shell… surviving; a physical body, but that would be all. There would be no being.)

Kim, a Canadian autistic woman, wrote that. She learned a non-communicative form of speech as a child under pressure and only began to use speech to communicate as an adult after using a communication device for awhile. Last I heard, she still alternated between speech and typing. The full text of what she wrote can be found at What Is Autism?

World needs retards. Yes! Retards, retards, retards! You can say it, too. Retards. Go ahead and say it. Go ahead and shout the word. Retard is who I am.

Elana Connor was, at the time of writing a short piece reclaiming and taking pride in what’s normally a nasty epithet, a girl in California who had recently begun typing. The full text of what she wrote can be found at Why Retards Are Sad In This World. That is apparently one of the first things she ever wrote.

I dreamed of being normal, the best that I could be —
But it’s awful being normal; why can’t you all see?
I’m tired of being normal — autistic’s what I am.
Why can’t we all be normal, being just as I am?

That is from I Dreamed of Being Normal, by Jeff Seeger.

I am not defective. I don’t need to be repaired. Allow me to be the person I am.

That is from I Am Not… An Autistic’s Response to Prejudice by Joel Smith, a part-time aug comm user and proud autie.

All people are real, in the deepest sense of that word. That means that there is no such thing as a non-human human. But if you look around this room, you will see people who look at least non-standard. And that is where the problem begins. We live in a country where image is kind of a reality more real than reality. My main answer to that is: I don’t need surgery to make me real any more than a beautiful woman “really” needs her eyelids sewn back. The fact that I think I do and she thinks she does is more fairy tale than real. Eagerness to be like others didn’t make Pinocchio real — it turned him into a donkey! And eagerness by parents to cure autism or retardation or compulsiveness will not drive great distances toward the final solution to the actual problem. Because the person who believes “I will be real when I am normal,” will always be almost a person, but will never make it all the way.

That is by Eugene Marcus, who uses facilitated communication. The article is On Almost Becoming a Person.

When Doug Biklen was recruiting authors for his anthology, Autism and the Myth of the Person Alone, he said of Lucy Blackman:

Blackman […] is hardly any more accommodating to what she perceives as my interest in how-to strategies. “’How to’ for what?” she asks. When I requested that she write about her experiences with autism so that others might benefit from her analysis, she told me she found it annoying to be approached about such matters and not about her ideas on non-autism-related topics. She felt my agenda assumed she might be “wanting to be normal.” She does not. Blackman reminds me that my agenda might not be her agenda, and that if someone feels it valuable for her to be heard, she would rather discuss her “pure intellectual thought.” She is not about to unveil a series of “remedies” or “practices.”

He did convince Blackman to write for his book, and this is part of what she said in it:

If I were to say anything about autism, it would be how fascinating it is. The idea that autism is fascinating is more that it is what I hope for the future, that my kind of thought processes are seen as possibilities for the next genetic shift in Homo Sapiens, not that it is a progression but that further down the track the slight changes in individuals scattered among the population is a slight difference in problem solving. Unbelievably those of us who have greater difficulties may be nature’s experiments, and you can’t expect evolution to get it right every time.

Recently, Estee wrote a blog post called My Visits with Larry Bissonnette and Jonathan Lerman. Both are artists who are also autistic. Here is her account of part of her conversation with Larry Bissonnette (another co-author of Autism and the Myth of the Person Alone), who communicates by typing:

Larry is what you call classic autistic. So I ask him outright, “Do you want to be cured of your autism?”

“People who think your disability is a sickness need to be cured of their ignorant attitudes.”

I smile, he smiles, we high-five. We have a moment of understanding and his sense of humor becomes so apparent.

I started with a quote by Cal Montgomery (who speaks using a keyboard and is heavily involved in the cross-disability movement), so I’ll end with one from the same article, Defining Autistic Lives, which was a review of Autism Is a World.

But where Rubin appears to believe that the problem is that autism limits her ability to function in the world, I believe that the problem is that the world is set up for neurotypical nondisabled people. I believe that the problem is that most people take for granted the way the world is. I believe that the problem is that they identify “defects” in individual autistic people, that they presume that these defects are somehow medical in nature, and then, having diagnosed autistic people’s failure to manage in the world as an individual medical problem that happens to show up in a whole lot of us, they conclude that medical professionals should be curing — or at least controlling — us. And having made that conclusion, they continue to accept or support ways of living that shut us out.

Again, these are obviously not the only opinions of people who use augmentative communication, but it would be silly (one would think) to assume that all people who fall into any particular category have the same opinions about everything. (I’m not saying that everyone’s equally right, just that everyone has varied opinions.) And these are not saying there are no rifts in the autistic community and that we’re one big happy utopian family, because we’re not.

But it is evidence that our opinions about being autistic (or as some put it “having autism”), and our deemed “functioning level” (which is often, for some reason, very speech-dependent), are not particularly correlated. People who do not believe in cure and/or find some value in being autistic are represented in the whole autistic “spectrum” as far as anyone knows (this includes people who had no means of communicating about it for a long time), and so are people who do believe in cure or do not find value in being autistic. So it’s about time people quit making ridiculous comments about “If you were one of those people who couldn’t talk, you would not believe what you believe.” Our differing beliefs come from our differing worldviews, not our “functioning level” in the eyes of non-autistic people.

A website that makes me feel ill.

Stuff on My Cat. It’s apparently a blog in which people put objects on top of their cats or clothes on their cats and take pictures of them.

It’s hard to describe what’s wrong here.

Maybe it’s that I’ve had people put me into various poses when I couldn’t do anything about it, and thought it was hilarious.

Maybe it’s that I know a guy whose staff treat him like a living doll, and give him things like mohawks and dress him in strange clothes for fun, when he doesn’t ask for any of this.

Maybe it’s that I see the look on those cats’ faces, and it reminds me of the way my cat looks when someone picks her up without asking permission. And the fact that people like that always seem oblivious to the fact that she’s a living creature, not a toy.

I bet it’s the same sensation in my stomach that some people got in their own stomachs, when they thought that I didn’t really write Getting the Truth Out, and thought that I was merely having my picture exploited.

Cats can’t tell you, in English, to stop it, and a lot of people take the inability to say “Stop it” as an invitation to do whatever you want. A cat’s clear “No!” signals can be ignored more easily than a human saying “no,” or even “Stop that or I’ll report you for assault.” A lot of people think that once speech isn’t there, you’re an object, not a person.

That must be why that site makes me queasy. There’s something really not right, not about the website itself, but about the mentality that makes treating living creatures like dolls and stuffed animals, okay. That mentality seems to be pervasive, especially towards people of whatever species who can’t talk back in unambiguous English, or who have so little power that what they say in English can be “safely” ignored (“English” here is because I’m in America, it’d be other languages elsewhere obviously).

(Side note:  The solution to this is much more about shifting power imbalances, than teaching all animals and non-speaking people their “native language”.  There will always be animals and non-speaking people who can’t speak their “native languages”.  Making it totally socially unacceptable to treat people like dolls is feasible, training everyone to say things in the majority language is not.)

Autistic Aug Comm Users

I’m starting to put together a page of links to stuff (webpages and books) written by autistic people who use augmentative communication (at least a good chunk of the time, even when not always). The motivation behind this is similar to my motivation behind putting together the Autistic Authors Booklist, which was largely because people were always acting like only three autistic authors existed and it was getting really tiresome when I had books by easily dozens, and also because people were under the impression that vastly more female than male authors existed which also turned out not to be the case.

In this case, I recently got a comment along the lines of, “So if you communicate by typing, where are the rest of the people like you?” And I realized I’d known people before who’d never heard of any auties who couldn’t speak having written any books.

There are a lot of them, with varying degrees of usable speech, varying times of acquiring speech, varying kinds of communication devices, varying levels of loss of speech, various levels of physical and/or emotional independence accessing communication devices, etc. And of course most of those can vary within one person, so there’s people who speak and type independently and use facilitated communication, and it can surprise people in which order some learned.

This is the permanent page on this blog I’m using for this at the moment.

That’s the list I’ve come up with so far.

I know I’m leaving a lot of people out. It was easiest to find FC users because of the FC Institute’s website having a lot of their writing. I know there’s others, as well as people who don’t use FC at all but use augmentative communication. I’d be interested in knowing who I missed (with links to their writing) so I can add them to that list, as well as any writing I’ve missed by the people on the list already.

And as reference, one thing I’m not doing is trying to say that this makes anyone more or less “really” autistic, more or less credible, or anything else. So I’m not too interested in engaging in either “This person doesn’t really type” discussions, or “Wow these are the real autistics and all those speaking kinds are just pretending or not as knowledgeable about autism” discussions. I hear enough of both of those the rest of the time. I get enough questions about whether I actually exist or not that I don’t want to do that to anyone else. And having read the writing of a lot of autistic people who’re regarded as all over the “spectrum”, I’ve seen what I regard as both clueful and clueless stuff both coming from all over people’s perceived positions on said landscape. So no need to say that I’m going to disregard all people who communicate in X, Y, or Z fashion.

Autistic AAC Users

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

• Poetry from the May 1998 Syracuse FC Conference
• Defining Autistic Lives
• Autistics Speak

Richard Attfield

• Letter
• My Half of the Tide
• Who Dug Me Up From the Land of the Dead?

Roy Bedward

• Roy Bedward (Breaking the Barriers)

Larry Bissonnette

• My Classic Life As An Artist
• Beyond Questions and Answers
• Right To Communicate
• Being Laptopped into World of Personal Expression

Jamie Burke

• Celebrating 25 Years of I.D.E.A.
• The School of My Dreams
• Inside the Edge: A Journey to Using Speech through Typing

Elana Connor

• Why Retards Are Sad In This World

Robert Cutler

• In Memoriam: Gunnar Dybwad

Kim Duff

• What Is Autism?

Tyler Fihe

• Relentless Activism
  
• Tyler’s Survey

Peyton Goddard

• It’s Your Move
• Peyton Goddard (Breaking the Barriers)

Lincoln Grigsby

• Poetry
  

Eve Hanf-Enos

• Taming the Untameable

John Jameson

• Four Poems

Sharisa Kochmeister

• Poetry
  
• Reflections on a Year of Turmoil and Growth
• FC and Me
• Excerpts from Shattering Walls
• To Have a Voice is to Have a Choice
• What Frontline Didn’t Tell You

Schlomo Lowinger

• Schlomo Lowinger (Breaking the Barriers)

Eugene Marcus

• How FC Users and Their Professional Supporters Can Define and Defend Success in Facilitated Communication
  
• Outrigging the Partnership: Reflections on Collaborative Songwriting
• The Jenn and Gene Comedy Hour
• Advice to Peer Supporters
• On Almost Becoming a Person
• Compulsion, and Yes, Freedom Too
• My Life Among the Chatterers
• My New Years Wishes
• Helping Facilitated Communication Speakers Make Friends

Tito Rajarshi Mukhopadhyay

• When Silence Speaks: The Way My Mother Taught Me

Sarah Nettleton

• FC Was the Key

David Newton

• Me and Lanny

Tom Page

• Tom Page (Breaking the Barriers)
  

Nick Pentzell

• How Things Have Changed

Jeff Powell

• Letter of Introduction

Sandra Radisch

• Sandra Radisch (Breaking the Barriers)

Chammi Rajapatirana

• On Being Mute
• Thoughts on Facilitated Communication

Heather Rossignol

• Knowing and Longing

Sue Rubin

• Living and Thoroughly Enjoying Life in Spite of Autism
• Whose Life Is It Anyway?
• A Brief Account of my Life with FC
• Independent Typing
• Castigating Assumptions about Mental Retardation and Low Functioning Autism
• A Recipe For Success
• In the Footsteps of Cesar Chavez
• Killing Autism is a Constant Battle
• On Doing One’s Homework

Nick Russi

• The Hindrance People

D.J. Savarese

• D.J. Savarese (Breaking the Barriers)

Jeff Seeger

• I Dreamed of Being Normal

Jenn Seybert

• The Jenn and Gene Comedy Hour
  

Joel Smith

• This Way Of Life
• NTs Are Weird (blog)
• You Have It So Good
• Autistic Pride Day: Do We Celebrate It Right?

Sarah Stup

• Are Your Eyes Listening?

Ian Wetherbee

• The View from Huntington College
• The View from Huntington College II

Organization Websites

• The Lonesome Doves
• Breaking the Barriers
• Watch Our Words

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. Ballastexistenz » Blog Archive » Autistic Aug Comm Users says:

   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. Autism Blog Web Design Blog: » If Someone’s Not Broke, Don’t Fix Them says:

   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. ballastexistenz says:

   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. andreashettle says:

    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.

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.

Booklist additions

The Autistic Authors Booklist now contains:

• Sarah Stup
1. Do-Si-Do with Autism (2006) [added to booklist 2006-06-25]

NPR show time seems definite now.

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

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.