Monthly Archives: March 2010

When all you have is a hammer…

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Let’s get two really simple things straight.

Overload is not anxiety.

Shutdown is not dissociation.

Overload may cause anxiety sometimes for some people. But it is an experience that is at the heart of things… sensory, perceptual, cognitive, whatever you want to call it. But while emotions can be involved, it really isn’t at the core an emotional experience. Get rid of the emotions and overload and shutdown will still happen for most people.

I think there are two main things at the root of this confusion:

One, overload and shutdown are not ideas psychiatric professionals are generally taught about. They generally are taught more about emotional experiences than perceptual ones.

Two, the only time many nonautistic people can be driven to something that looks like overload or shutdown is in the middle of incredibly intense emotional experiences.

I had a “friend” for awhile (in quotes because I knew her during a period where I thought friends were anyone who would tolerate my presence, even though this particular friend did a lot of things that most people wouldn’t put up with from their friends) who had been traumatized to the point where sometimes her emotions got so huge that she just froze up and couldn’t function. I frequently overloaded and shut down in front of her in a way that looked superficially similar.

Thing is, my experience of overload was this: I was simply being asked to process more information at once than was possible for me. I would hit a cognitive bottleneck and my brain would start shutting down all functions it deemed unnecessary to concentrate on processing the information so it would get working again. This could be a scary experience when I didn’t understand why it happened and fear didn’t help but it happened often enough with no help from fear or anxiety.

So even though this friend knew me at periods in my life when I frequently had speech and motor shutdowns, the last time I talked to her, she insisted on reinterpreting all of my experiences of sensory overload in terms of trauma that she imagined I experienced. Even in the face of me explaining that wasn’t the case.

(Which incidentally made me remember how often she used to take advantage of my social passivity to explain my experiences and actions to me. Even if I was able to object, she refused to listen to my objections. She just went merrily on coming up with explanations for damn near anything I did, down to the way I parted my hair. And that realization is why I now want nothing to do with her. I don’t need someone prattling on about how I part my hair for any other reason than convenience or symmetry, or creating a totally false narrative about the reasons for everything else I do. And unlike childhood, I now know I am allowed to choose my own friends.)

So according to this person, all overload is trauma-induced anxiety and all shutdown is trauma-induced dissociation. So all the times I couldn’t speak or move in her presence were automatically caused by trauma. And unlike a real friend, she’s unwilling to hear the genuine explanations. (I am glad she’s not going into psychiatry.)

And I think for her the reason she believes that is that the only thing that can cause such severe speech or motor problems in herself is severe trauma. And that is probably a reason many laypeople would leap to that conclusion.

But for psychiatrists and psychologists I think it’s related to being taught more about emotions than about certain perceptual experiences.

I once had a case manager who insisted that if I walked into a closet to get away from the language and visual overload of a meeting, then I was dissociating. She also refused to take my word for it, but in her case it was because I was just a layperson so what did I know. The fact that I have had experience with severe dissociation much of my life (mostly because of pain) and can tell a definite difference, doesn’t seem to cross such people’s minds.

I also have experiences where I find it difficult to find my body. I experience all sensory input, including that from inside my body, as external. So frequently the body awareness signals get lost in the midst of awareness of lots of other things in my environment. This isn’t dissociation. It isn’t depersonalization. I’ve had depersonalization. It’s different. This is simply an outgrowth of the way I perceive my surroundings and the way my brain orders those perceptions.

I have seen problems like this throughout literature on autism. Tony Atwood has suggested that those of us who have periodic speech problems must be experiencing anxiety. Because in nonautistic people, such problems usually come from anxiety and psychiatry calls that selective mutism. Certainly anxiety doesn’t help, and some autistic people do experience speech trouble because of anxiety. But the reason speech drops out for many of us before other things is it uses a ton of resources for most autistic people. It is cognitively difficult and it requires thinking, moving in complex ways, and listening to this horribly loud sound in your ears that makes your head feel weird inside. It’s like that program on your computer that’s a resource hog and you have to kill it to keep the rest of the computer from grinding to a halt. So get anything else resource intensive going and speech can just vanish. It’s hanging by a thread. In one of my climbing analogies it’s like hanging on a cliff by your fingertips instead of standing on solid ground and when you fall, it goes away. (And for some of us we are too badly injured in the fall to ever climb so high again.)

But that is one reason a well known autism “expert” once told me that if she could reduce my anxiety, I wouldn’t need to use a keyboard. Hello? It’s been over ten years, my anxiety has steadily reduced, and my speech has steadily reduced as well. When I met her the periods without usable speech had stretched to include most of the day. Now they’re all of the day. Reducing anxiety didn’t help.

And that’s where these interpretations are a problem. If anxiety is a component of overload by all means try to do something about it. Same if pain is part of overload. But as I discovered once my anxiety and pain had been reduced drastically (and all the pain related warnings I got about overload were gone, so I had no way to predict it)… I went to a grocery store. And… everything around me speeded up. My brain felt like it was slogging through molasses. And I got slower and slower until I just, very calmly and painlessly (but still with a sort of cognitive discomfort)… stopped. Because anxiety and pain are not at the core of overload and shutdown, they are just elements that can make it worse if they happen to exist.

And the misinterpretation is a problem because if you assume that these are at heart emotional experiences, then you will spend a whole lot of time trying to move emotions around believing it will solve overload. When the real solution to overload is learning to detect and manage it by identifying what causes it and what should be done with it. If anxiety is a factor then you should certainly do whatever you can to get it under control. But at most it’s a factor.

Overload is about a brain not having enough resources to process all the information it’s dealing with. Shutdown is about a brain doing the equivalent of a computer killing off processes that make the computer run too slow. They are not the same as anxiety and dissociation. Treating them (and other cognitive, sensory, or perceptual experiences) as if they are, doesn’t help.

If we were real people.

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This post is for the disability blog carnival.

If I could eliminate any single disability stereotype, I would sit there and try to figure out which one underlies the most others, and pick that one. If you are going to be given a tool that selective and narrow, it’s good to choose carefully by picking the one whose destruction would destroy the most others. And after observing for a time, I have concluded that the stereotype that I would most want to eliminate is the one that says disabled people are not real or whole people.

If we were real people, killing us would be bad, and killing ourselves would be unfortunate rather than something people build special laws to enable.

If we were real people, the world would be designed in a way that allowed us to move through it without extra obstacles thrown in our way.

If we were real people, people would see us as individuals, rather than heroes, tragedies, inspirations, or representatives of our entire impairment group.

If we were real people, then giving us proper medical care would never be seen as pointless.

If we were real people, the whole myriad range of disability stereotypes would look flimsy and silly because people would see us as we are.

Of course we’re already real people. But the problem is that so few people have noticed.

Human instincts, survival-related and otherwise

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Some people seem terrified of the idea that human beings have instincts. I don’t hold that view. I find human instincts fascinating — the way we just know things, or do things, based on things that are built into us very deeply. I don’t mean to say that all humans have identical instincts, just that we all have them.

I have terrible body awareness. I often can’t locate pain at all, and if I do it’s often because someone has sat down and played twenty questions with me for an hour or longer. Sometimes I don’t even know I’m in pain, I just notice the responses to it and fail to connect the dots.

Which makes it astounding to me when instincts related to health or body awareness give me information out of the blue that I can’t tie to any conscious sensation.

Twice in my life I have been aware of an organ malfunction that could be life threatening if not caught and treated. The information appeared quietly and with great clarity. It was not accompanied by fear or any other emotion. The information consisted of the ideas, “Something is wrong with one of my organs. If nothing is done, I will eventually die.” This was accompanied by frequent thoughts of death — not anxious or depressed thoughts, but “hello you need to be aware of this” thoughts. In fact the lack of emotion and the quiet clarity of the information was astounding.

The problem was that neither situation showed me which organ was having problems. Luckily, in both instances someone figured out what was wrong. In one case my gallbladder had completely failed after producing two large stones (nobody had told me that early onset gallbladder disease ran in my family for generations among the women). In the other case, a pulmonologist who eventually suspected my main problem wasn’t asthma anymore, did an exhaustive set of tests until a CT scan showed a form of lung damage that is progressive and fatal if not treated (and is still more dangerous than asthma if treated, but can be managed well with regular breathing treatments).

In both cases the instinctual warning bleep stopped bleeping at me after treatment (surgery in the first case and twice-daily breathing treatments in the second).

In other cases (one in particular stands out in my memory) I have gotten a slightly different warning bleep. Again, there was no emotion attached, just quiet certainty. Despite the fact that the warning was more urgent: “You are in immediate danger of death if you don’t do something right away.” I know it’s happened more than once but the only time I can remember right now happened a couple years ago. I had just gotten back from the emergency room where I’d been treated for an impacted bowel movement and released. This was not the first or the last time this had happened. I had managed to pass an enormous stool that had blocked both my bowels and my bladder. I had been catheterized. And these sorts of things, when they had happened before, had been the beginning of the end of the problem.

But this time was different. The warning bleeps started off by telling me that under no circumstances should I be left alone. So I told someone that I didn’t know why but I needed someone to be there constantly after I got home. An hour later, the warning bleep told me I would die without assistance. I was about to tell this to the person with me when I collapsed (I could still walk part time back then) and started vomiting. The person with me called 911 and by the time I got to the hospital I was delirious and hallucinating while seeming to only half of the time be conscious. The blockage had started poisoning me and I ended up admitted to the hospital until the danger was over.

Those sorts of instincts make sense to me. It makes sense for a body to have a built in warning system. I have spoken to others with chronic health conditions or who had been in life threatening situations who know all about these warning bleeps. People who were at risk of hypothermia whose hallucinations told them not to go to sleep no matter what. People who had been hit by cars and despite confusion from concussions or blood loss, had instincts that told them not to move for any reason. This stuff makes sense even though it is still in the realm of cool and amazing, especially amazing in those who otherwise lack body awareness.

But the one that is happening to me right now seems outright strange. I can’t figure out why it would be an important instinct. My menstrual periods stopped over a year ago. The only way for me to have a period is to induce it with hormones, and even then it’s not the super-heavy kind normally expected after a seven-month break.

The weird part? I’ve skipped a period or two before. That’s not weird. What’s weird is that even after I’d only skipped a month, I knew for certain that it wasn’t coming back without intervention. My crotch area doesn’t feel any different from normal, I have no idea how I know this. But I still know that. It’s an absolute certainty in my head that I will not be having any non-induced periods anytime soon.

To be honest, I’m really happy about this. I almost never get migraines anymore, when before they happened all the time. My moods are totally stable. I don’t have to deal with the hygiene stuff. I wasn’t planning on having kids. There are risks to not having a period but if I have one induced only every six months I’m safe.

I just don’t understand the purpose of this instinct. Knowing my periods have stopped coming naturally, doesn’t seem to save my life. It does make me happy, but that doesn’t seem like a reason for this kind of detail in an instinct. So to me this is the strangest of all the body-related instincts I’ve ever had.

Don’t just hand me things.

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This post has to do with the same topic as my old post Safety Hazards. By the way, the Foradil is no longer a problem for two reasons. One, I had a routine set up so that a staff person would hand me the inhaler with the capsule already inside and punctured. Two, insurance quit covering Foradil and gave me Serevent instead, which is a discus not a capsule.

And now I am typing around the body of a cat who timed her snuggle so that it came after the sound of the nebulizer shut off.

Some background: Now that they know the breathing trouble was bronchiectasis, not asthma and not me just being a pest, I have a treatment routine that makes the “breathing takes effort” thing and the “coughing only brings up phlegm the size of a pinhead” thing far less of a problem. I take two nebulizer treatments a day, each with a vial of 7% saline. But it’s really important to use my inhaler first or else the saline can do terrifying things to my airways that at best take eight puffs of my inhaler to keep me out of the ER.

So the usual routine is someone hands me my inhaler. I take two puffs. Someone hands me a nebulizer mask. I put it on. Depending on my position either I or the other person connect it to the tube and turn on the nebulizer.

So today someone walked into the room, handed me the nebulizer mask, and made a bunch of clanking sounds as well as a small sound like cuujooholdhis. So of course I put the mask on and things could have gone very badly.

The other thing is that I usually have to make an effort for words to be words and not random noise. It’s not just an auditory processing thing, it’s a cognitive/language processing thing where I spend most of my time in a default state where words haven’t even been thought of yet. And even when I concentrate I sort of phase out into that state a lot. So to me, most of my interactions on a typical day involve seeing patterns of movement, hearing patterns of step and tone and stuff, and mostly interacting by the process of being handed something, and then doing whatever I usually do with that object.

Which means “could you hold this?” is just a set of quiet sounds with an offhand, casual feel to them.

And handing me an object you don’t want me to immediately use can be a dangerous idea, depending on what you’re handing me.

Study about healthcare needs participants, and people to spread the word to recruit more participants.

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This post is about a study that we are doing at AASPIRE. We need people both to spread the word and to participate. For participants we need autistic people, nonautistic disabled people, and nonautistic nondisabled people. The following is the sample text I’ve been given, because otherwise I could not write a post about this at the moment.

***

Hello. I am a community partner representing the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE). I am contacting you today to ask for your help in recruiting participants for a new Gateway study. The Gateway Project serves as a gateway to research committed to inclusion, respect, accessibility and relevance to the autistic community.

We have just launched a new Gateway study that I am really excited about. The study aims to better understand health care inequities, including barriers to receiving quality health care. We are comparing the healthcare experiences of autistic adults to those of non-autistic adults with and without disabilities. AASPIRE’s long-term goal is to improve healthcare access and quality for adults on the autistic spectrum.

How Can You Help? We hope that you will help us by getting the word out about our study. You can let people know about the new healthcare study by directing them to www.aaspire.org/projects.html. I have also attached flyers which you can download or post. If you prefer to receive hardcopies, contact Roberta Delaney at delaney.roberta@gmail.com.

Some Background about AASPIRE: AASPIRE is an academic-community partnership that brings together autistic self-advocates, researchers, and people who support autistic adults to develop and perform research projects relevant to the needs of autistic adults. You can learn more about AASPIRE at www.aaspire.org.

I have pasted copies of the text of our recruitment flyers below. Please let me know if you have any questions. Thanks so much for your help!

Please note that if you use the fliers you should not alter their text at all.

Links to PDF flyers for printing:

PDF Flyer (autistic)
PDF Flyer (other disability)
PDF Flyer (general)

The first flyer is our flier targeted at autistic people:

APPROVED: Dec. 18, 2009
Be Included in Autism Research
The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and the Gernsbacher Lab believe in research WITH autistic adults, not just ABOUT autistic adults.

Together, we have created the Gateway Project, an online gateway to research that
* encourages the inclusion of autistic adults in matters that affect them;
* includes autistic adults as equal partners in research about autistic persons;
* answers research questions that are considered relevant by the autistic community;
* uses research findings to effect positive change for people on the autistic spectrum.

Gateway studies address topics such as well-being and problem-solving. A new AASPIRE Gateway study focuses on the healthcare experiences of autistic adults and adults with and without disabilities. AASPIRE expects to use the information learned from this study to improve healthcare.

To participate in the AASPIRE Healthcare Study and any of the Gateway studies:
1. Register for a Gateway account at the Gateway homepage http://thegatewayproject.org .
2. Take the online Gateway Survey. It will take about 20-40 minutes to complete.
3. Wait for email messages about further studies. You may be eligible for some studies and not for others. You will only receive email messages for studies for which you are eligible.
4. If you are eligible for the Healthcare Study and decide to participate, it will take about 40 minutes to complete.
5. After finishing each survey, you can enter a drawing for an Amazon.com gift certificate.

If you would like to learn more about AASPIRE or the Gateway Project, you can
Go to the Gateway home page at http://thegatewayproject.org .
Send an email to Dora Raymaker at dora@aaspireproject.org.
Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602.

OHSU IRB #5580
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University; Dora Raymaker, MS, Autistic Self Advocacy Network

Please pass this information along to your friends!

The second flier is our flier targeted at disabled people in general:

Participate in Disability Research
APPROVED: Dec. 18, 2009

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and the Gernsbacher Lab have created the Gateway Project. The project serves as a gateway for research that is committed to inclusion, respect, accessibility, and community relevance.

Several Gateway studies may interest people with disabilities. A new AASPIRE Gateway study focuses on the healthcare experiences of
* adults on the autistic spectrum,
* non-autistic adults with disabilities, and
* non-autistic adults without disabilities.

AASPIRE expects to use the information learned from this study to improve healthcare.

To participate in the AASPIRE Healthcare Study and any of the Gateway studies:
1. Register for a Gateway account at the Gateway homepage http://thegatewayproject.org .
2. Take the online Gateway Survey. It will take about 20-40 minutes to complete.
3. Wait for email messages about further studies. You may be eligible for some studies and not for others. You will only receive email messages for studies for which you are eligible.
4. If you are eligible for the Healthcare Study and decide to participate, it will take about 40 minutes to complete.
5. After finishing each survey, you can enter a drawing for an Amazon.com gift certificate.

If you would like to learn more about AASPIRE or the Gateway Project, you can
Go to the Gateway home page at http://thegatewayproject.org .
Send an email to Dora Raymaker at dora@aaspireproject.org.
Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602.

OHSU IRB #5580
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University;
Dora Raymaker, MS, Autistic Self Advocacy Network

Please pass this information along to your friends!

Also, here are some sample tweets or Facebook entries that you can use (although on a personal level I confess near-total confusion as to how either of those things work):

* New Gateway Study about Healthcare. See http://www.aaspire.org/projects.html. Participate in research with autistics, not just about autistics!

* I am so excited about our new Gateway Study about Healthcare. Please participate! More info at http://www.aaspire.org/projects.html.

* AASPIRE has launched a new Gateway Study about healthcare inequities. Please participate. See http://www.aaspire.org/projects.html

Aspie Supremacy can kill.

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A disclaimer: I don’t believe in real distinctions between aspies, auties, LFA, and HFA. When I use these words I am discussing the beliefs of people who do believe in them. Edited to add: aspie supremacy is a shorthand and people should be aware that the prejudice contained within it can and does affect many with the AS dx.

I think I am the person who coined the term autistic supremacy. At the least, I came up with it without having heard it before. It was 1999 and I came up with the term to explain certain trends to my psychologist. This, by the way, means that those people who are running around gloating about how us autistic activists brought these people’s offensiveness on ourselves, or ranting about how nobody cared until recently? They have no grasp of the history. None at all. I have been opposing this in all its forms for eleven years and know that others have been doing the same.

Others may use the terms differently and I don’t claim some kind of ownership over the definition but here are the ways I use these words.

Back then it was just a tiny number of people who thought this way. When I used the word, I meant people who went beyond just wanting equality. They thought they were better than nonautistic people. Not just in satire or jokes but for real. Some of them went even further and considered nonautistic people worthless or even worthy of death or being rendered nonexistent by (a distorted idea of) evolution.

A friend tells me this sort of thing is a normal, perhaps even necessary, part of a minority group’s journey to self-acceptance. Maybe, but it still leaves a bad taste in my mouth.

Some people consider separatism a form of supremacy. I don’t, not unless the separatists are the ones with the power. A white separatist is a white supremacist and a segregationist. But when a minority (in terms of power) is separatist the reason is usually self-protection as much as anything. Sure, some supremacists become separatists but that doesn’t mean all separatists are supremacists. I am not a separatist but I understand the impulse to avoid those with the power to do you great harm.

When I use the term aspie supremacist I mean something more specific. I am referring to “aspies” who think they are superior to other autistics, or to “AS/HFA” who think they are superior to “LFA”. In practice this means, “We aspies are just different but autistics are defective”. “AS/HFA is part of human diversity but LFA has no value”. It’s the Carleys of the world cringing at the very idea of sharing a label with people who wear diapers (the joke’s on them as many “aspies” wear diapers too). It’s any and every way that the value and contributions of “AS” and/or “HFA” people a put above the value and contributions of “autistic” and/or “LFA” people.

Aspie supremacy is disgusting and despicable. I understand that all of us absorb certain cultural values but that is what makes aspie supremacy more dangerous than general autistic supremacy.

Autistic supremacy can do damage but it’s limited damage. They have neither power nor numbers on their side. They can rage on the Internet. They can cause damage to the few people around them offline. Even if one decided to cause as much harm to everyone around them as possible it would be tragic but in no way equal to the harm done autistic people all the time. Usually the most harm they do is getting people to believe that most autistic activists are like them. They just don’t have the power to do wide-scale harm.

But aspie supremacists… where to start. Their ideas are essentially very similar to the ableist society we all live in. A society that values “high functioning” whatevers over “low functioning” whatevers where the further you are from the norm the more “low functioning” they call you. Have you ever wondered why some of the people who hate autistic activists the most are often just as willing as the aspie supremacists to put AS/HFA in one corner and LFA in the other? To say “Maybe aspies are part of human diversity but Real Autistics ™ are defective?”. It’s because the aims of aspie supremacy are very close to the views of those in power. And to someone like me it’s a fricking slap in the face, and worse.

I am far enough from the norm that even my talents and objections do not keep me away from the idea of “LFA” and out of grave danger that puts me in. My body has permanent and life-threatening damage, the kind most common today in places where there are no doctors or vaccines, and all but forgotten in America. That’s because medical professionals have not seen me as a valuable enough person to treat. Once while I was beginning to go septic I heard one medical professional tell another I had the cognitive functioning of an infant (something I don’t believe of even people with the lowest IQs). I had no way to contradict him because I can’t speak and was too weak to type or do anything but squirm and wail.1 I have heard professionals say out loud that my life was not worth saving, that I really wasn’t a person, nobody home.

This means I am vastly more in need of being seen as an equal than people closer to the norm are. This is the part that neither aspie supremacists nor anti-autistic-activist types ever seem to want to get: On average the further from the norm you are, the more it is literally a matter of life and death that your value be seen as equal with the people with the most power. (I know there is life and death stuff for those closer to the norm too but we are talking averages.) So aspie supremacy is a threat to my life in a way that general autistic supremacy is not. Aspie supremacy is telling those in power, “You are right about those auties/LFAs/whatever, but not about us aspies. Why don’t you just let us in to that big room full of valued people, and close the door in the face of those who need the protection of that room even more.”

Also, anyone who argues that aspies should be protected from institutions (of all shapes and sizes), aversives, unproven medical treatments, and the like, but that LFAs “need” those things? That it’s a tragedy when someone kills an aspie but understandable (and perhaps even preferable) when someone kills an LFA? You and anyone who listens to you is doing the exact same thing. The more vulnerable you are to the worst of the ways we can be treated, the more protection you need from the idea that it’s all worthwhile or understandable for you if not for the more normal ones. This too is reminiscent of aspie supremacy in different clothing. It’s all more and more devaluation and it’s endangering the rest of us.

I know that to many aspie supremacists it doesn’t feel like that’s what they’re doing. It feels like they are just stating common sense, that aspies have more valuable skills, more logic, less dysfunction, whatever, than other autistics. But that’s because having a bit of relative privilege renders them unaware of the full consequences of their actions. They don’t realize that they have things backwards — the more devalued you are, the more you need equality, the more you need to be considered another important part of human diversity, etc. Not the less. And “less” is what aspie supremacy ends up meaning to those of us who (even when we have some very valued skills in a few areas) are more vulnerable to devaluation and all of it’s effects. Including the lethal ones.

1 Edited to add: When I say this I am not meaning to imply infants should be devalued. Generally when a medical professional makes the rapid judgement that someone “has the mind of an infant”, it’s a code word for “nobody’s home and we can do whatever we want”. This does say a lot about how infants are devalued.

The Fireworks Are Interesting

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The closer you get to the heart of things, the more words fall apart. First they get shaky. Then they start contradicting each other or getting paradoxical. Then they just fall apart, dissolve, vanish.

The way my thoughts work creates some similar problems for language. And it’s not just that I haven’t found the absolute best combination of words to translate my thoughts with. It’s that on a fundamental level the thoughts don’t translate.

My thoughts, such as I am aware of, are mostly observations of the world, that I have allowed to slowly and quietly settle themselves into patterns. They are not symbols of those observations. Symbols would have a better chance translating. They are also silent — no words pop in to describe them, there is no “loudness” about them, they don’t announce themselves with any kind of fanfare. I suspect to many people they would seem like an absence of thought.

I have also observed words. I have seen which clusters of words attach most frequently to which situations. And that is how I use words — as imperfect translations of situations that present themselves in my mind. I use words because they are the most readily recognized way to communicate with most people.

[With some people, words are not necessary. There are better ways to communicate. That is wonderful in every sense of the word.]

The way I use words can present problems though. I start with a situation and then I throw words at it. The problem is for any given situation there are many ways you could approach it with words. Some of those words might even seem contradictory if set side by side. But it’s not that the situation itself is contradictory, it’s just that language can be complex that way.

For instance, in my last post I described what could be called, and what are often called, subtypes of autism.

Someone replied saying they don’t believe in one type or many types of autism but that it seemed from my post as if I believe there are many.

The reality is more complicated than that.

Autism is not a thing. There are only the people who get called autistic.

I recently tried to describe the process that led to modern notions of autism. I have read many of the original sources for that and for other areas of psychiatric classification. My language skills were less fluent than stuff I normally publish online, but even though I am eating again (I was sick when I wrote it) I still can’t come up with more fluent language for the description I gave of the way ideas of autism have come about.

Were original people designated as autistic.

Original people had their be.

Original people had their “seem to professionals”.

Those not the same.

Then people later might identify with the be. Or with the seem to professionals. Or with the seem to professionals of the original seem to professionals.

So later version of who is autistic ==

People be like original people be.
People be like original people seem to professionals.
People be like original seem to professionals seem to later professionals.
(…)
People seem (to self or professional or family) like original people be.
People seem (to …) like original people seem to professionals.
People seem (to …) like original seem to professionals seem to later professionals.
(…)

Which total complicate what people see now as one thing and try to find one common deficit.

So when I say autism it is a shorthand for a modern language-based classification of a bunch of human beings that involved a lot of biases, historical accidents, and clutter-minded evolution of the sort I described above.

So when I say subtype of autism I mean there are people with some cognitive things in common, who also happen to be classified by those stilts-upon-stilts-upon-stilts standards as autistic. I mean to refer to real live people that I have observed patterns in. Not the baggage that comes with the words.

So I could just as easily have described us in a way that involved a questioning of the entire category system that gave birth to notions like “autism has many types” or “autism has one type”.

This may not be the same reason that the guy who replied to me doesn’t believe in those things. But it is still a lack of belief in those things. And my lack of belief in those things is not changed by my use of the words that most people are familiar with — autism, subtypes, and so on. My lack of belief in those things also is not a good reason for a troll to reply saying something like “If you don’t believe in those things then stop calling yourselves autistic damn you.” To say such a thing is to take my words on entirely the wrong level, and such comments will be cheerfully deleted.

There are third, and fourth, and fifth, and so on, ways to describe the situation in the last post or for that matter in any of my posts. It can be hard to know which one to use, whether to combine a few, or what. And no matter which way I choose, I will be leaving out a world of important things.

Because of this, please don’t persist in telling me what I believe after I have confirmed I don’t believe it. It doesn’t matter if you come up with ten separate examples of words you are totally certain prove I believe something or come at it from a certain viewpoint. If I say I don’t, then I don’t.

To get back to the way I think, I am not even certain I have “beliefs” (even if I use the shorthand as if I do). Once you peel back the layers of language that I use for communication… I have observations and experiences, I have patterns of observations and experiences, and so on. “Belief” seems to require jumping up into language again. So do many other concepts that seem more language-based than anything. Language forces me to use many concepts that have nothing to do with the way my mind works when I am not writing. Those concepts form weird mesh-like frameworks in people’s heads and they then associate me with the mesh-like frameworks instead of with the person beneath them. (And it’s not just me this happens to, but everything.)

But if you look between the words (not the same as between the lines), rather than at them, you can start to see things far more interesting than the words themselves. (This is not abstract. This is as concrete as it gets. The words are the abstractions.)

The use of language has the annoying property of insisting on the reality of lots of abstract concepts. Even seemingly concrete words like “green” are arbitrary, and different languages will divide the colors different ways. (The Irish language, I am told, has more than one word that translates as green and one of them involves colors that in English would be specific shades of green, grey, and brown.) Whereas just looking at an object of certain colors doesn’t require figuring out how any given language classifies them. So literally anything I perceive has to go through a horrid process of translation and distortion and oversimplification. Even the most “literal” language is hopelessly abstract compared to what language is trying to describe.

Every single time I write, I pick up a set of tools. Those tools are the phrases I cobble together into sentences.

“Subtype of autism” is one example of such a tool. It is a shorthand for certain people that I have made certain observations about.

Just because I happen to use the nearest available set of translation tools does not mean I have, in picking up those tools, agreed to the entire worldview of the people who built the tools. I don’t have to agree that autism is a real thing, or that it is not socially constructed, in order to use phrases that include the term. I use these tools because the alternative is silence, not because I have picked up an entire set of beliefs about the world with every phrase I use.

Even more, my failure to describe something does not mean I haven’t observed it. A friend once told me that she envisioned my brain as having these enormous clumps of detailed information, but without a way to access most of it. Most of what I know, I can’t say. What I do say is just an approximation of a sliver of what is in here. Notice how much trouble I had describing part of the history of autism. Even when not sick almost all my attempts have looked similar. Does this mean I lack awareness of what has happened? Does this mean I view autism as a concrete reality, as a type of neurology, as all these other ideas words bring in? No. Not even if I use the word “neurotype”. I know this can be hard to understand but it’s true. No matter what I say will leave out 99% of the information and distort the rest. Don’t be fooled by words.

All of this is just a reminder for everyone, of how and how not to read the words I write. I am not trying to force anyone, or to say everyone is able to do this. I am just trying to give a reminder of how I do and don’t work. If it doesn’t make sense, don’t sweat it. It’s hard to get words to make sense on a topic as completely opposed to words as this one. It’s a little bit like seeing antimatter and trying to use matter in it’s vicinity. The fireworks are interesting.

My sort of people, just as real as theirs.

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I have wanted to write this post for a long time. Like many posts I have written, I have written bits of it but never the whole thing together. The catalyst that is finally making it possible to write it is a sad one rather than a happy one, though. Even though the topic itself is happy. I’ve once again found my entire life pretty much rejected by someone whose life has followed a pattern closer to the dominant stereotypes of what an autistic person’s life looks like. Why? Because I am different than them and a few people they know, and don’t really make sense to them, so it just follows that my existence isn’t valid or real.

The systems of privilege among autistic people are complicated. You can’t really just say one person has more on some absolute scale of privilege. But there is a form of privilege accorded to those autistic people whose lives follow any of a number of patterns. Those include people who most seem to resemble the most dominant stereotypes of autism, and also those whose experiences are the most commonly discussed when autistic people get together and discuss such things (even though which experiences get discussed is also related to which fit the stereotypes… and on and on in more levels of complexity).

I became aware of all this when I first encountered the autistic community online. I was just barely an adult, just barely learning to connect thought to words in any lasting way, and feeling as if I was just falling and falling when it came to the skills most valued by society. Speech was there, but for huge parts of the day (more and more of the day) it wasn’t. I fell out of a tree for the first time in my life that year, and my motor skills were becoming interesting in all the wrong ways.

And as I entered chatrooms and mailing lists, there were things I had clearly in common with people but what stood out to me were the differences. Why did everyone else seem to describe puberty as a period of sudden advancement when for me it was when everything I thought I had painstakingly gained fell apart? Why did people describe some things in a way that didn’t make much sense to me? There was more belonging here than anywhere, but at the same time I kept wondering if there had been some massive mistake when I was diagnosed. I only really knew a handful of people, and virtually nothing about autism, or about systems of privilege, or the way our experiences were measured against professional standards. I was only 18 years old, and very… I don’t know the word. Meek, passive, terrified of going against the rules while aware I was made in such a way that meant I would never in my life be able to follow them. Mixed up. And so on.

But as I met more and more autistic people, something began to happen when I least expected it. People began to pop up. Here and there. And we made instant and total and amazing levels of sense to each other. In everything from described experience to body language to… all kinds of things I never in my wildest fantasies of “finding my people” had ever expected. People who, as I sometimes put it, didn’t need to come in my front door because they were already inside. I don’t mean we were identical, far from it. But we were made of the same stuff, and enjoyed an ease of communication I had never believed possible.

These people helped me figure out more about my own abilities, difficulties, and general place in the universe than I had been able to figure out on my own. Like I described in a recent post, we were separate, no untoward boundaries were crossed, but we resonated. Powerfully.

It was also clear from the way things were playing out that whatever we had in common was not just wishful thinking. We varied as to which of us first described some particular aspect of our lives. Often many people individually and separately came up with similar descriptions. You can never be 100% sure two experiences are the same, but we were as close to sure as we could get of what we had in common.

And these people were all also, like me, put into the category of autistic. We were far from the largest or most dominant grouping of people, but someone had seen fit to put us all in that category despite all that. (Doubtless one day other groupings of human beings will happen. They always do. But in today’s groupings, this is where we all ended up in the end.)

But as for which of the professional categories we were put into? All of them. Sometimes one single person had been put into several. LFA. HFA. Asperger. Autism. PDD-NOS. No rhyme or reason to it. But we’d all been called autistic.

I also don’t want to make it sound as if this was some kind of absolute thing. It wasn’t. It also wasn’t planned or expected. And it wasn’t that we all had identical characteristics, just that within the forest of autism we were all different varieties of oak trees, or else trees closely related to oaks.

The thing we had the most in common is the hardest thing to describe. A perceptual state, a way of relating to the world around us, which there were no words for but which was recognizable to each other. In an inadequate shorthand, these are some things we recognized in each other. Please note that while some things are more stereotypical than others, we have no choice how close or far from the stereotypes we are. These things just exist, and these descriptions are the product of lots of conversations among ourselves about these matters, not the product of any single one of us:

1. Mutually comprehensible body language. To an almost frightening degree, to people who were used to being shielded in a way by the fact that most people couldn’t read us.

2. Trouble understanding language. By which I don’t mean mishearing words, but rather existing most of the time in a state where language did not make sense. And this totally irrespective of how fluent we appeared in speech or writing — many of us had learned to fit words together as patterns of sound before understanding a single word of it. Meaning did seep in over time but in an unusual way and very prone to vanishing again. Never at home in language regardless of whether we are excellent writers/speakers, or people who can’t write or speak a single word. Always requiring effort. And always starting from a “level” much “below” that of language even being something we have thought of.

3. A way of learning certain common skills where we might be able to perform a skill, even at a seemingly high level, then having it disappear as if it had never been there and having to relearn it from scratch. Sometimes this would happen once, sometimes many times. We could try to learn these things, manage to perform like building a house of cards, and then a gust of wind would blow it down. And starting again from scratch. The best description I have ever heard of such things came from Jim Sinclair’s article called “Bridging the Gaps”:

I taught myself to read at three, and I had to learn it again at ten, and yet again at seventeen, and at twenty-one, and at twenty-six.  The words that it took me twelve years to find have been lost again, and regained, and lost, and still have not come all the way back to where I can be reasonably confident they’ll be there when I need them.  It wasn’t enough to figure out just once how to keep track of my eyes and ears and hands and feet all at the same time; I’ve lost track of them and had to find them over and over again.

4. Having a different way of learning where things fit themselves together slowly over time, and are more likely to stay put. The main problem being that this isn’t something we can do on demand. It just happens. It is slower, more unpredictable, “behind one’s own back” and cannot be relied upon to produce any given wanted result. And the skills learned may not even be skills that have a name or a concept for them in most people’s eyes, so may be considered nonexistent or worthless.

5. Having a highly unconventional way of perceiving the world. Usually of a specific kind that is still hard to describe except for describing what it is not. Perceiving color, shape, texture, tone, etc. without easily or automatically perceiving something like “table”. This being another variation on the same thing that makes receptive language so difficult. Anne Corwin describes this:

I would probably walk into the room and see “check patterns” before even being able to identify the door as a door and the tablecloth as a tablecloth! I tend to be incredibly clumsy and easily overwhelmed in new/unfamiliar settings because it takes me a long time to figure out where (and what) all the “macro-objects” are. When I go to a new place for the first time I sort of need to scout and scan all around it like a cat before I can really navigate effectively. The process of “resolving patterns and shapes and forms into familiar objects” is actually a semi-conscious one for me.

I was talking to some other people about this phenomenon once, and one thing that came up was that some of us in that conversation (including me) often tend to sit on floors and other surfaces even if furniture is available, because it’s a lot easier to identify “flat surface a person can sit on” than it is to sort the environment into chunks like “couch”, “chair”, “floor”, and “coffee table”.

6. Having stayed in that mode of perception long enough to have developed ways of understanding and navigating the world that can be done without having to leave that mode of perception. This is sort of where all those patterns slowly coming together and growing more complex with time comes in, in the mode of learning I described earlier. So perceiving the world sort of as if we are moving through this sea of colors and textures and sounds and smells, but having learned to understand and navigate that sea without having to pop into “gee is that what they call a table?” mode. And having “table mode” be one of those exhausting things we may be able to do or even do well but that just plain doesn’t fit with us and easily drops away again.

(Sometimes I describe the last two things and people go “Oh it was like that when I was three.”. But for us it is still like that. Except having grown up and learned the whole way, it’s not as confusing as it was when any of us were three.)

7. Instead of having abilities that are locked into one mostly unchanging pattern, having abilities that are engaged in a constant shifting set of tradeoffs, whether you want them to or not. So always being in flux, never being certain what abilities will (and won’t) be there next, and thus seeming really inconsistent on a lot of levels.
Here is how I once described this:

Storks do not fly long distances under their own wingpower. What they do, is catch hot air currents called thermals, and use them to assist their flight. This does not mean that they don’t do any work, but that they have to keep track of exactly where to concentrate their work, among a shifting mass of air currents.

Well… that seems to be how my mind works. There are all sorts of things equivalent to thermals: Perception, movement, communication, language, contemplation, etc. They’re always shifting around, and I can’t always be certain that something’s going to be there at any given time, or what form it will take when it’s there. I have to plan my life around this kind of unpredictability.

This does not mean that I am simply carried around without having to do any work, but it does mean that there are some areas where, for that moment, all the work in the world won’t do much of anything but wear me out, and other areas where the work I put in goes further. It also means that what I set out to do isn’t always what’s going to happen, and when it does happen it can be through a roundabout sort of route.

There is more. There is much more. There is always more. But the English language was not developed by or for people like us, leaving me always feeling impotent and repetitive as a writer when I try to talk about this stuff. I tried harder than I have ever tried in my life when I wrote my article in the current Disability Studies Quarterly, but still, there’s that language barrier. So if I didn’t get something quite right, chalk it up to that, I can’t sit around trying to perfect my descriptions all day and have already described many of these things in depth individually.

Call that a subtype of autism, call it a bunch of people who happen to find that we have things in common and who are also considered autistic, whatever, that’s just words. But these are things that are important to the people experiencing them, not just to the professionals observing us. We are not better or worse than more stereotypical autistic people, just different.

Anyway, I have found that… there are people who read descriptions like this and go “WTF how’d you get into my head?”

To such people, at least a big part of those descriptions is going to be really familiar. They might or might not suddenly be able to add onto such descriptions themselves. But they generally find this incredibly familiar and intuitive, the same way I find similar descriptions from others. And they will easily see how the pieces fit together.

Others go “Bits of that sound familiar.” it may or may not make sense as a whole but they have at least some things in common.

Others go “WTF that’s totally alien or even opposite to my experience.”

That third group? That’s where the privilege comes in. Most people from that group are people who say their experience of autism is similar to professional accounts, or similar to the group norms that have developed in parts of the autistic community. And that means that if they choose to react to this unfamiliarity with some combination of dismissal, scorn, disbelief, etc… then a lot more people will listen to them than to us.

In the autistic community there is a stereotype that says that autistic people all think in a way involving much more of the “that is a table” stuff than I use. That autistic people’s abilities are very stable in the long term. That there is only one direction of “progress” and that is the direction even most nonautistic people say is forward. And Temple Grandin may be responsible for a lot of this, especially the idea that autism “grows less with time”.

Is that a valid version of autism? Sure. Is it the only one? No way. I have talked to a lot of people who just have trouble grasping how people like me work.

The other option, besides grumbling about us not being autistic enough, is to either say “That’s different than my experience, but, meh, whatever, we are all different,” or to even say “Wow, that’s different than my experience but it’s sure interesting, tell me more if you want to.” Either of those responses is sufficient.

Having to listen to autistic experiences different from our own is something those of us with experiences in the minority do all the time. We have to. We are outnumbered. It would be nice if instead of going “how can you possibly call yourself autistic,” people with the majority experiences would just learn to accept that theirs are not the only autistic experiences on the planet.

I have actually gone into more depth than most people I know of to learn the different experiences autistic people can have. I listen. A lot. And it’s endlessly interesting to hear how those of us who share a label both resemble and differ from each other. This is one reason the people at MIT find me useful, because I have delved heavily into the many lived experiences of autism and can tell them if I have heard of anyone having a particular experience (either directly through autistics or indirectly through parents or professionals). They also say I am unusual in that I don’t just repeat what the professionals say about us, I instead am very aware of the multitude of different things we say about ourselves, and the influences of the thought of different professionals on the stuff we say.

It’s a fascinating topic if you’re interested in it. But you don’t have to be into learning that stuff, in order to give people with the less common (and/or less commonly discussed in the autistic community) variants of autism the basic respect of believing what we have to say about ourselves. Because that voice in your head that says “If it differs from me or people I know then it must not be real?” That’s ableism. And to the many people who have written to me in private to say they have these experiences but fear telling about them in case they get rejected or called liars? That rejection from even other autistics of all people, the people they expected compassion from, that can be devastating.

Blogger/Blogspot has an inaccessible comment mode

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Arguably the biggest reason I can blog now is my iPod touch. It allows me not only to communicate in words in the offline world while lying down (impossible otherwise), thereby potentially saving my life. But it also allows me to blog and read blogs while lying down. Despite its inaccessibiloty in other areas, it is nearly perfect for someone with my particular skills and difficulties.

But then there is this new commenting mode for blogger. No matter which option I choose, if I am on my iPod I get an error. It’s the one with the pulldown menu and is the bane of my online existence. I am totally unable to comment on blogs that use it.

Taking a Third Option is one of several blogs I follow that use the evil comment mode.

Existence is Wonderful uses the most convenient of the several other options I can use. (Convenient because it doesn’t require me to be logged into blogger, which is nearly impossible ever since Google took over Blogger thereby meaning it is linked to my gmail accounts and makes life a huge hassle.)

Ones that require I log into something are somewhere in between. Because I could technically do it but inertia being what it is, don’t hold your breath. But unlike the evil comment mode, those are at least theoretically possible. I generally use the Name/URL format.

But I figured I should at least let people know of the accessibility headache that one comment mode creates for anyone who might for whatever reason find using the iPod their best bet at being online at all. Which probably includes lots of people who like me have the motor skills to use one but are frequently horizontal.