Tag Archives: Autism

Don’t ever assume autism researchers know what they’re doing.

Standard

This is my post for Blogging Against Disablism Day 2016.  Like many of my posts, although it focuses on one specific situation (autism research) it applies to a much more broad set of circumstances if you look at it closely.  I was originally planning on doing something much more ambitious for BADD, but reality (and the reality of being a disabled person) got in the way of that.  So here is a different post that was fortunately written long in advance.  I hope it can serve as a resource for a lot of people, because I’ve been asked about this test a lot, and I usually only manage to describe part of it.  This is the first time to my knowledge that anyone has said all of these things at the same time in one place.  Apologies for the lack of sourcing, but I’m a blogger, not an academic, and if I had tried to do that I would never have been able to write it.  My inertia already prevented me doing what I wanted to do today, so I’m not going to let it prevent me from posting this.  So, with no further introductory babbling on my part:

Reading The What In The What?

The state of autism research is pretty uniformly terrible.  There is good research out there, but most research is bad.  The bad research includes some of the most popular research used to support the most popular theories about how autistic people think, and why.  Psychiatric research in general has low standards for quality control, and autism research seems to have lower standards than most.  If you can come up with a theory, it doesn’t matter how hare-brained it is.  If you have the skills to get it published, someone will publish it, whether your theory holds water or not.

The research is often so bad that I can see through it.  I have no formal training in research methods or techniques. And I have no formal training in autism.  Yet I’ve been able to see through the holes in autism research so well that I have been sought out by researchers to critique their own research ideas and suggest better avenues for research and techniques to use.

One research tool that has angered and frustrated me for years, is Simon Baron-Cohen’s “Reading The Mind in the Eyes” test.  It is most often used to show that autistic people lack empathy and the ability to figure out what other people are thinking and feeling based on body language and facial expressions.  Unfortunately, the test has very little real validity:  It measures all kinds of things it claims it doesn’t measure, and fails to measure the things it claims to measure.  And very few people understand this.  They take Simon Baron-Cohen at his word, especially because he’s a Big Name Autism Expert.  But he became a Big Name Autism Expert with research that for the most part is just as bad as this test

So for a long time, I’ve wanted to tell people what I thought was wrong with the test. The way I experience it, I feel all the wrong things at once. That makes it extremely difficult to communicate.  I feel the urgency of how wrong it is and how that wrongness is affecting autistic people around the world on a daily basis.  And I get frustrated that I can’t communicate ever single problem I see in the test. I’ve done it before, but it’s always exhausting and overloading, and I never feel like I’ve gotten all the information out there.  That’s why I am making this post.

Understand that when I bring up a potential problem with the test, I’m not saying that I absolutely know that it is a problem.  I just know that it is a potential problem, and that most of the official writing about the test does not address any of these problems.   There are possible solutions — other ways to test for the same things — but they would have to be done carefully.  And probably not by Simon Baron-Cohen, because he’s proven over time that he’s more interested in creating research that appears to support his theories, than he is in finding out what is actually happening with autistic people.

So what is the test?

The Reading the Mind in the Eyes test works like this:

A pair of feminine eyes in heavy makeup in a black and white photo with four words written around it: joking flustered desire convinced

A sample question from the Reading the Mind in the Eyes test.

 

 

You look at a black-and-white photograph cropped to only include a person’s eyes.  There are four words for different emotions.  You pick which emotion you think most closely matches the emotion conveyed by the picture of the eyes.  You do this with a large selection of eye pictures.  Then they score you by comparing your answers to the answers given by nonautistic people.  If your answers match the most common answer given by nonautistic people, you are scored as being correct.  If you answers do not match the most common answer given by nonautistic people, you are scored as being incorrect.  Then your scores are compared to a particular set of norms, to see whether you “pass” the test overall, or not.

I have a lot of problems with the design and administration of this test.  As I said, some of them might prove to be real and some of them might prove to be unreal.  But I can’t imagine that the test is so good that it overcomes every problem that I see with it.  So I’m going to discuss each element that I find wrong with this test.

These are still photographs.

Like many other elements of this test, this is different from how emotions occur in real life.  When we observe someone having an emotion, we don’t observe a still photograph.

The photographs are in black and white.

Unless we have achromotopsia, we don’t observe the world in black and white.  When someone is having an emotion in front of us, they do not turn into a black and white photograph.

The photographs are cropped to include only one part of the body.

We don’t know all the different ways that autistic people might read emotion.  We certainly don’t know it well enough to crop out every other indicator of emotion in order to focus on the eyes, and then make inferences about people’s understanding of the mental and emotional states of others, based only on one body part.  Since we don’t even know whether autistic people routinely pick up on body language, let alone how, it’s irresponsible to crop the image to one body part and assume that this is how we will tell whether and how autistic people pick up on body language or facial expression in general.

The photographs feature a part of the body that autistic people are notorious for having trouble looking at, and therefore avoiding, in real life.

Lack of eye contact is a very common autistic trait.  So common it has sometimes ended up described in the diagnostic criteria.  If autistic people avoid looking at people’s eyes, then it stands to reason that it’s possible we have no practice reading people’s facial expression through the eyes alone.  So why crop an image to the one part of the body we tend to look at the least, and then make broad inferences about our ability to read body language based on our ability to understand what’s going on with people’s eyes.

Different autistic people’s descriptions of why they avoid eye contact differ.  And some autistic people make eye contact, some even make more of it than nonautistic people do.  But many autistic people describe making eye contact as involving intense anxiety, physical or emotional pain, sensory overload, terror, or a sense of being flooded with the other person’s emotions.  Any of these things could prevent an autistic person from making a lot of eye contact, or from looking at people’s eyes in general, even as pictures on paper.  If there’s something that a person has spent their entire life not looking at, then obviously they’re not going to have skills that most people get from looking at eyes.

There’s a tendency in autism research to view autistic people’s abilities in ways that other disabled people’s abilities are not so frequently viewed.  Blind people can’t usually read facial expressions.  Deaf people can’t always hear tone of voice.  But people don’t assume that blind or deaf people lack theory of mind because there are elements of nonverbal communication they don’t understand due to sensory impairments.  But that’s exactly what is done to autistic people over and over — there are things that we just plain can’t perceive for various physical reasons, and then those are used as evidence that we don’t even know other people have minds at all.

And, of course, we don’t even fully know that autistic people don’t perceive those things.  Quite often, autistic people’s abilities are compared to nonautistic people’s abilities, and not taken as possibly having ability patterns of our own that are quite different:  Many autistic people report being able to read body language but not the same body language that we’re expected to be able to read.  Many autistic people report being able to read other autistic people’s body language — or some other autistic people’s body language — but not nonautistic people’s body language.  When nonautistic people can’t read autistic body language — which is usually — they’re not told they lack social skills, they’re told it’s because there’s no body language there to read, or because we lack social skills.  But when we can’t read theirs, we’re told we lack social skills.  But that’s a completely separate problem in and of itself.

The photographs are created from actors.

An actor playing an expression is not the same thing as a person spontaneously experiencing an emotion.  Acted expressions — and understanding them —  relies as much or more on popularly understood stage conventions, as it does on understanding what emotions actually look like in real life.  So this test is essentially a test of your ability to read stage conventions In a particular context, and to do so similarly to the way nonautistic people would.  If autistic people pick up on unconscious body movements that actors would not be able to change (because they’re used to only changing movements that nonautistic people perceive, and leaving alone movements not perceived by most people), then this test would not test things accurately at all.  Like all these situations, we don’t know if that’s the case but we definitely don’t know that it isn’t the case.

The correct answer in the photographs doesn’t rely on what emotions the actors said they were playing.

The correct answer was arrived at by asking large groups of nonautistic people what the person in the photograph was feeling. The most common answer became the correct answer.  So there’s a chance that the emotion the actor was playing, is totally different from the emotion that everyone says they have.  And this is not addressed at all.

The test assumes that the most common answer given by nonautistic people is the right one.

This assumption basically makes the test a circular argument:  Nonautistic people are better at reading emotions than autistic people, because we have created a test where the correct answers were created by looking at the answers of nonautistic people, thereby ensuring that nonautistic people are far more likely to get the right answer.  And then when autistic people give different answers than nonautistic people, it’s used to prove that we don’t understand what’s going on in the photographs.  Can you see how completely circular the reasoning is there?  The way the test is created, anticipates its own solution.  If autistic people’s reading of body language differs at all from nonautistic people’s, then we must be wrong.

So what if the most common answer given by nonautistic people is wrong?  Nothing about the test even allows for this possibility.  it’s created wit the assumption that nonautistic people are right, and that the only way for autistic people to be right is for our answers to resemble the answers of nonautistic people.

The test sometimes seems to rely more on how people feel looking at the eyes, than on how the person with the eyes must feel.

I chose the particular photo from the test for a reason.  The image is of a woman’s painted eyes, looking stereotypically sexy.  The correct answer is supposed to be “desire”.  It’s not clear to me at all that this has anything to do with what the woman in the photograph is supposed to be feeling.  It seems to me that it has much more to do with how the person looking at the photograph, feels in looking at a seductive pair of eyes.  I don’t actually know what the woman in the photograph is portraying for real, but I have a strong feeling that it’s not actually desire.  Desire is what people feel looking at her.  And if this is happening in this photograph, it’s possible that it has happened in others as well.  That the feeling evoked by the eyes is seen as the same as the feeling of the person with the eyes.  Another photo of a very similar pair of eyes, by the way, gives the correct answer as “fantasizing” or something like that, and again I can’t help but suspect that’s the way the person felt looking at her, rather than what she felt when the picture was taken.

The test requires a person to process nonverbal and verbal information simultaneously, or very close together.

Many autistic people have trouble processing information quickly, and have trouble multitasking.  This can take many different forms.  But it’s fairly common for autistic people to be in a situation where we can either process nonverbal or verbal information, but not both at once.

Some of us develop stable adaptations where we always process nonverbal information but never verbal information, or where we always process verbal information but never nonverbal information.  Others of us switch around so that sometimes we process verbal information, and other times we process nonverbal information.  And some of us have a baseline state where we process either verbal or nonverbal information more readily, but can switch to processing the other in certain situations.  Some of us do process both in some situations, but in those situations process both of them mediocre to badly instead of one well and the other not at all, like we’ve spread out our information processing too thin so our abilities in both areas suffer compared to what they could be.  For autistic people who switch back and forth between verbal and nonverbal information processing, we can’t necessarily make the switch at will, nor does the switch always happen in an instant.  Sometimes it takes a good deal of time.

All of this means that a test that requires a person to understand nonverbal information while picking a word out and applying that word to the nonverbal information, is possibly putting an autistic person in a position where they are not able to show what they truly understand.

Because it’s quite possible that when left to our own devices, some of us process the nonverbal information accurately.  Possibly even more accurately than nonautistic people.  But then we are unable to make the switch to processing and understanding words while applying those words to the nonverbal information. For any of a large number of reasons.  So even if we would otherwise make accurate observations, the test may be setting us up to fail.

This test relies on the ability to apply words to observations.

This sounds like my last complaint about the test, and I’ve already described how processing differences could create problems here.  But there’s one other problem.

Autistic people who can apply words to observations at any time — well or badly — well enough to take this test, may be very different from autistic people who are unable to ever apply words to observations (or unable to do so reliably enough to take the test).  There may be some overlap between the two groups, but the two groups may also contain people whose abilities differ enough to be worth noting.

Much research into autistic cognition relies on the abilities of autistic people who can use or understand language.  It’s assumed that autistic people who can’t use or understand language well enough to take part in the research, are the same, just with more severe autistic traits.  So if a verbal autistic person has some ability to get correct answers but not as well as nonautistic people do, it’s just assumed that a nonverbal autistic person would be even worse at this than a verbal autistic person.

There are, however, a number of autistic people whose stated experiences of the world completely belie these assumptions.  I happen to fall into that group of people, myself.  This is people who have spent any period of our lives, with a severe enough difficulty with processing verbal information, that at that time we would be unable to take this test.  Those of us who have spent long enough in such a cognitive state, often report that our brains prioritize nonverbal information over verbal information.  At those times, we are not just a verbal autistic person with more severe social awareness problems.  We are a completely different kind of autistic person, with a completely different cognitive profile, including nonverbal social awareness.

Now obviously you can’t get into the head of someone who has always had and will always have so much trouble processing verbal information, that they will never be able to describe their experience.  But there are autistic people who can now ocmmunicate using words at least some of the time, but have spent enough of our lives with significant enough verbal processing problems, that we can give descriptions of what our cognition was like in the past, even if it has changed now.

Some of us describe being essentially the same as most verbal autistic people, but with additional difficulties (in a wide variety of areas) that most verbal autistic people don’t have.  But others of us describe — and sometimes are observed by others to have — abilities that are completely different in their type and pattern than anything described by the average verbal autistic person.  And some of us describe the ability to pick up nonverbal information from others, at least as well as nonautistic people do, if not better.  And there is no opportunity within this test, to test people who are in a state where their nonverbal cognitive abilities are excellent but their verbal skills are too poor to take the test.

It also doesn’t take into account the possibility of people whose ability to read nonverbal cues is excellent, whose ability to use language in general is also excellent, but whose abilility to apply language to these specific situations is not so good for any of a variety of reasons.  One of which I’ll address in my next point.

This test relies in particular on the ability to apply words to emotional states.

Even autistic people who are highly verbal can have difficulty applying language to emotional states, in themselves or in other people.  This test does not take into account the possibility that a person might be good with language, good with reading body language from nonverbal cues, but bad at applying words to emotions in particular, so they would fail the test even if they knew the right answers.  Because knowing what an emotion is, and knowing that the emotion is called ‘happy’, are two different things.  There may be autistic people looking at someone’s eyes, seeing happiness in those eyes, but not knowing that the word happiness applies to the feeling they are observing.  There’s an assumption that understanding something, and understanding the word for something, are the same thing.  They’re not.  Not for everyone, anyway.

This test gives no possibility to give a different and possibly more accurate answer.

It’s a multiple choice test.  What if all of the choices are actually wrong, and something else is actually right?  Not only is this not considered possible. (because it’s just assumed that the majority of nonautistic people are going to be right about something like this).  But there’s no mechanism to deal with it if it happens.  If the autistic person understands the body language better than the nonautistic people did, and is even able to accurately apply a word to the emotion they believe they are seeing, but the word is not in the multiple choices?  Out of luck.  Maybe an autistic person can read what that woman in the photo is actually feeling, rather than ‘desire’.  Maybe they know a word for it.  Maybe the word is ‘anticipation’ or something — that’s a completely random guess on my part, not intended to be accurate.  But if ‘anticipation’ is not on the list, then even if it’s exactly how the woman is feeling, there’s no way to pursue that as the right answer and get credit for understanding her emotions.

This test assumes that autistic people’s abilities to read body language would work the same as nonautistic people who read body language.

There’s a bunch of assumptions that go into this.

One is that autistic people and nonautistic people would, if processing body language, do it in the same way.  So testing autistic and nonautistic people on the same extremely specific situation, is supposed to give overall information, rather than testing of the specific abilities necessary to get the ‘right’ answer in this extremely specific context.  So this test is seen as testing autistic people’s ability to read body language in general and assign mental and emotional states to other people (and even to know that other people have emotional states).  When it’s actually testing autistic people’s ability to come up with the same verbal answers as most nonautistic people, to a question asked while viewing heavily cropped images of actors deliberately portraying emotional states showing a still black and white photograph of their eyes.

If autistic people have any difference in how — and in what context — we process emotional information from other people in a nonverbal fashion, this test does not allow for contexts that might differ considerably.  Just as an example, what if autistic people understood nonverbal information primarily through watching hand movements, whereas nonautistic people understood nonverbal information through the whole body, or through the eyes in particular?  This test doesn’t allow for that possibility, given that it’s still photographs of eyes.

A closely related assumption that I see happen all the time in autism research, is that the only abilities that exist are the abilities we know about in nonautistic people.  So if there are ways to understand nonverbal communication, they’re assumed that the only possible ways to understand it are ways that nonautistic people understand it.  It’s assumed to be impossible, that an autistic person could be just as good at understanding emotions from nonverbal cues as a nonautistic perosn is, or even better — but that the way we do it is so different that the test doesn’t test for it.

This is one reason that such an artificial limiting of the context creates problems.  You’re assuming that if we had this ability, it would show up in our ability to pick out the same words as nonautistic people, to describe the emotions experienced by an actor deliberately portraying the emotion in a still heavily-cropped black and white photograph of their eyes.  Maybe some of us can read elements of body language that nonautistic people can’t read.  To figure that out, you would need to have as much of the original context of the body language retained as possible.

Ideally, you would test autistic people’s responses to a person experiencing a genuine emotion, in the same room as the autistic person.  That way, the autistic person would be getting all the sensory information possible, rather than getting sensory information that is limited or distorted to include only the parts that nonautistic people find the most relevant.  And if we were observing something like the tightness and sweatiness of someone’s skin combined with subtle unconscious body movements nonautistic people don’t even pick up on?  Where nonautistic people were not relying on that information at all?  Then we would still get that information and be able to give accurate answers.  Whereas it’s possible that the test as currently conceived, shuts out the information autistic people would need to get the right answers.  And then acts like we would never have gotten the answers right to begin with.

Given that it’s well-known at this point that autistic people’s perceptual experiences are significantly different than nonautistic people’s — and from each other, often enough — then there’s no excuse for limiting the context so much that you’re potentially shutting out the information sources that autistic people actually use.  Like, this test might be useful for isolating what differences exist between what autistic people rely on to process nonverbal cues, and what nonautistic people rely on to process nonverbal cues. But it’s not useful for evaluating autistic people’s overall ability to evaluate nonverbal cues. But that’s exactly the kind of broad conclusions leapt to by the author of this test and people who use it in their studies.

This test assumes that when autistic and nonautistic people’s answers differ, the nonautistic person is automatically correct and the autistic person is automatically wrong.

This is similar to something I said earlier but it’s worth repeating:  This test contains within the setup, the outcome.  Because it’s normal entirely on the responses of nonautistic people, who are presumed to be right about these things.  If autistic people’s answers differ from those of nonautistic people, we’re always assumed to be the ones in the wrong.  Always.  When this may not be the case.

I know an autistic woman who had to guess the emotions of live actors as part of her diagnostic process.  She scored terribly on the test they gave her. That basically involved looking at live actors and ascribing emotions ot them.  The problem was, she was reading actual emotional cues, not stage conventions at least some of the time.  So her answers were different — and actually more accurate — than the answers nonautistic people assumed should happen.

I’ve done the same thing in much less formal contexts — been totally unable to read the emotion a person is trying to deliberately project for others, but been better than average able to read the emotion underneath, the one that caused unconscious body movements the person was not controlling.  I’ve had this verified by the actual people having the emotions, and I think the woman who was tested talked to one of the actors afterwards and found out she was in fact describing his real emotions as well.  So there are autistic people who read unconscious emotional cues better than we read deliberate attempts to manipulate other people’s emotional awareness — but the deliberate manipulation is what nonautistic people are reading, and they’re therefore assumed to be right.

This test compares nonautistic people’s ability to read other nonautistic people’s body language, to autistic people’s ability to read nonautistic people’s body language.

There’s a possibility that people read body language more accurately for people more similar to them, either neurologically or culturally.  If this is true, then autistic people would be better at reading the body language of other autistic people — and in particular, people with similar types of autism to our own.  When I say similar types of autism, I don’t mean the official definitions of autism versus Asperger’s, or functioning levels.  I mean deeper levels of similarity and difference in how we think, process information, move, and respond to the world around us.

So if that is true, then this test isn’t a fair comparison.  A fairer comparison would be nonautistic people’s ability to read other nonautistic people, compared to autistic people’s ability to read other autistic people.  And even better — although impossible right now, because we simply don’t have good subtyping systems for autism enough to be used in research in the ways I’m thinking of — would be to have autistic people’s ability to read autistic people who are the most similar to ourselves in terms of sensory, cognitive, emotional, and motor experiences.

I was once invited to dinner with a group of people, some of whom were autistic and some of whom were nonautistic people (parents and research professionals).  I accurately described an autistic man’s level of cognitive and sensory overload, and asked people to help him become less overloaded in particular ways.  The nonautistic people in the room were stunned at my ability to (verified by him) describe his emotional, sensory, and cognitive state in so much detail and accuracy.  They had seen nothing at all wrong.  I had sensed it all over him from a variety of nonverbal information he was blaring out like a beacon as far as I could tell.

But the way that things like this normally go?  When autistic people can’t read nonautistic people, it’s because of a global social skills deficit of some kind in autistic people.  When nonautistic people can’t read autistic people, it’s either because nothing is there to read (we’re just assumed not to be giving off nonverbal cues because the cues we give off aren’t always the same as nonautistic people’s), or because autistic people have a global social skills deficit of some kind.  So either way, a difficulty reading someone unlike yourself becomes entirely the fault of autistic people’s supposed social skills deficits.  Even though it’ she exact same problem going in both directions: A difficulty reading people whose experience of the world fundamentally differs from your own, which may be a nearly universal social skills deficit in both autistic and nonautistic people.

Generally, professionals in the autism field don’t even consider the idea that some autistic people might be as good at reading autistic people similar to themselves, as nonautistic people are at reading other nonautistic people similar to themselves.  This possibility doesn’t even exist.  So even though nonautistic people have huge problems reading autistic people, and are not blamed for that, autistic people’s ability to read people in general is tested based on reading people who are very different from us.  This would be like judging all of nonautistic people’s social awareness and social skills based on their ability to interact easily with autistic people.  Very few nonautistic people can intuitively understand how to understand or interact with autistic people, it’s one reason that autistic people are considered inherently mysterious and confusing, or to lack body language altogether.

I actually have had a bizarre experience that has happened many times.  Nonautistic people have been trying to say they know what’s going on with me, when they don’t.  An autistic person walks into the room and instantly tells them everything that’s going on with me: My feelings, my thoughts, my sensory experiences, my abilities, everything, in great detail.  And almost always, the response the autistic person gets?  “That’s impossible.  Mel isn’t using body language, so you can’t possibly be reading it.”  Nonautistic people are so used to their perceptions being all there is to reality, that some of them simply can’t believe it when autistic people see things about each other that nonautistic people can’t see at all.  I’ve at times said “But this person is completely right about me!  What she’s saying is accurate!”  And still they would talk over both of us, saying that it was impossible for the other autistic person to have figured out what I was feeling, thinking, and experiencing.

It’s not just an either-or thing though.  I am good at sensing unconscious body movements and bad at sensing the meaning of consciously applied deliberate fronts that people put on.  I may pick up on the front, but I won’t always understand what’s going on in that front.  This is with most people in general.  But the more similar a person is to me — and this can be autism-related or in other areas as well, both innate traits and life experiences — the easier it is for me to read them.  A person very similar to me stands out as if they are the only three-dimensional person in a world of flat empty figures.  I can sense every layer of what they are experiencing, both the real and the false, the confusion and the reality, just an astounding level of detail.  And this is far from unheard-of among autistic people, but none of it is measured by this test, which I o quite poorly on despite explicit verification from other people like me that I read them shockingly well in a level of detail well beyond what is covered by a test like this.

Whatever the reality ends up being, it’s bound to be very complicated, and the way this test is set up is not a fair demonstration of our abilities.  Not fair as in, what we’re being tested on is not an equal task to what the nonautistic people this is normed on, are tested on.

The experiences centered on in this test are the experiences that are important to nonautistic people.

This is a variation of the last thing I just described, but it bears saying outright:  This deals specifically with experiences that nonautistic people find important.  Now, it may be that autistic and nonautistic people find at least some of the same experiences important to understand in ourselves and in other people.  But it may also be that there are experiences specific to autistic people, that we are better at picking up in ourselves and other people, because they are so important to us.  And those are not tested on a test like this — artificially elevating nonautistic people’s scores and possibly lowering autistic people’s scores as well, by elevating their priorities over our own.

One example of a thing that’s important to autistic people is overload.  It’s not just one thing.  It can come from sensory input, thoughts, feelings, movements, effort, all kinds of things.  And it can take many forms, and have elaborate nuances to it.  Most nonautistic people can’t pick up on overload at all without being taught how, let alone pick up on any nuances of overload, shutdown, and our responses to overload.  But an autistic person looking at an overloaded autistic person may be able to see all those things in great detail, as well as emotional experiences related to them.

Because language has mostly been created by nonautistic people, there’s not necessarily an easy way to show the things that autistic people are better at perceiving and prioritizing than nonautistic people are.  Because there are often literally no words for the experiences until we invent them, and therefore there’s no standardized words that we grow up hearing the way we hear ‘happy’.  This affects our ability to communicate what we do perceive in other people’s body language, even things that we are quite good at perceiving.

The test doesn’t show where the problem comes from, if it’s a problem of naming emotions.

As just described, autistic people often grow up not hearing good descriptions of emotional and other experiences that are very important to how we experience the world.  But worse, we often grow up getting bad information.  People who can’t read us well, tell us we are feeling things that we are not actually feeling, leading us to associate the wrong words with the wrong emotions, which affects our ability to apply those words either to ourselves or to other people.  This is not taken into account when people ascribe our results on tests like this to purely innate social skills deficits.  The effect of our environment on our ability to learn these things — hell, the effect of nonautistic people’s difficulty reading us on our ability to learn these things — might as well not exist as far as most people are concerned.  Including most researchers.

Not only does the test not show whether this is the case.  But discussions of our results on the test rarely take things like this into account as possibilities.  From what I have seen, good research is supposed to consider all of the possible reasons for a particular result.  But autism research rarely does, it merely gives the explanation favored by the researcher.  If it talks about other possibilities at all, it talks about them in the most brief and cursory way possible, and doesn’t delve into issues like this one at all.

If a proper research paper were written on this test as it is, it would include all of the problems I’ve described and am about to describe, and then describe ways that further research could take these problems into account and work out what’s really going on here.  But it doesn’t, the papers on this stuff pretty much never do.  They’re supposed to.  They just don’t.  Partly for reasons I think are about laziness (autism researchers are given so much license to do bad, lazy research that it’s possible to become incredibly lazy and never even notice the degree of laziness you’ve developed), but partly because the researchers simply haven’t thought of many of this because they’re so used to coming at things from their perspective alone.

This test assumes that all autistic people are essentially alike, and does not account for significant differences between different groups of autistic people.

It’s possible — in fact I find it likely — that there are many different cognitive profiles for autistic people when it comes to processing nonverbal emotional information from other human beings.  The way this test is dealt with, makes it seem as if there’s really only essentially one type.

So there may be:

  • Autistic people who can’t process nonverbal social information at all.
  • Autistic people who process nonverbal social information roughly the same as nonautistic people do.
  • Autistic people who process nonverbal social information roughly the same as nonautistic people do, but not as well or as efficiently.
  • Autistic people who process nonverbal social information more accurately than nonautistic people do, but in a completely different manner.
  • Autistic people who process nonverbal social information about as accurately as nonautistic people do, but in a completely different manner.

And those are just some of the possibilities.  In addition, each of the last two groups?  There may be multiple cognitive and perceptual profiles within each of those two groups.  Such that there may be dozens of different ways that an autistic person processes nonverbal social information, that nonautistic people don’t experience at all.  in addition, there are of course autistic people who are in more than one of the above categories, or somewhere between the above categories, or who switch back and forth between multiple categories.

The way this test is handled does not account for an extremely diverse set of abilities in autistic people.  And that limits its ability to report on what we actually experience, by averaging out everything until you get a sort of ‘average autistic profile’ rather than a profile that reflects the diversity of autistic experiences of the world.

This would be sort of like if you took autistic people who were great at nonverbal things and bad at verbal things and autistic people who were great at verbal things and bad at nonverbal things, and averaged out all their abilities until you got a picture of people who were average in both verbal and nonverbal things.  That’s an oversimplified example but you get the point.  My suspicion from actually knowing autistic people, is that there’s a pretty diverse set of abilities to read body language and ways that we read it and that this test is not allowing for any of that diversity to be showcased both because of the limitations of the testing material and because of the ways the results are interpreted after the data comes in.

Potential Effects of These Assumptions on Future Research

Assumptions about the limitations of autistic people carry over into research in ways that shocked me when I first discovered them.  I once had a conversation with a researcher I really respected, someone who was trying to do right by autistic people and understand our emotional responses and the like.  I asked her the following question:  “I know you’ve talked to a lot of parents of autistic children.  How many of them overall told you that their autistic child is the first person to pick up on emotional tension in their household?”

I’ll never forget her response.  It went something like this:

“Oh wow.  Actually?  I think every single parent told me that.  But until now, I had instantly put it out of my mind.  Because researchers like Simon Baron-Cohen said that autistic people were mindblind, unable to attribute emotional states to others, or unable to read those emotional states in others.  So any time anyone told me anything that contradicted what the experts were saying about this, I just forgot about what I was being told, assumed the parents were just mistaken, things like that.”

She was a very intelligent researcher who was trying her best to get past her biases about the abilities of autistic people.  And it took that question to start putting two and two together.

By the way, I did end up describing to her, in detail, an experiment she could do that would test the abilities of autistic people to read certain emotions in other human beings, without requiring the autistic person to ever have to use or understand language throughout any of the experiment.  It made use of technology and techniques already available to the research lab in question.  And she told me that it was a very good research design.  I hope that she will one day use it, because I want to see if I’m right in what I guess about this situation.  If I am right, follow up research could be then done to isolation what precisely is going on when autistic people accurately interpret social and emotional information from others, and what subgroups of autistic people may exist cognitively and perceptually, both among people who can do this, and people who can’t.

This is just one example of bad research design.

Pretty much all of autism research is littered with the kinds of holes left by things like the Reading the Mind in the Eyes Test.  Much other psychiatric research is just as bad, but there does seem something particularly sloppy about a lot of autism research.  And the things said by autistic people much like myself, are finally being proven right, slowly, by researchers who take a much more accurate approach to the information.

One thing that autistic people have complained about for decades now is the Sally-Anne test.  It’s supposed to test people’s theory of mind — the ability to know that other people have mental states that differ from our own, to attribute those mental states to others, things like that.  It does so by testing whether a person is aware — in a fantasy scenario often acted out by dolls or puppets or the like — that a doll during a test is deceived by the actions of another doll.

The test as normally given, uses some of the most complex sentence structures in the English language.  This is something that I had noticed before.  When autistic people pass the test, which we often do, we are then given more and more nested sentence structures of that type until we can’t do the test anymore.  Those more complex sentence structures are supposed to test ‘second order theory of mind’ and ‘third order theory of mind’ and the like — but really they’re linguistic nightmares with questions like “What do you think that Eric thinks that Sally thinks about what Anne thinks?”  Such questions trip me up at the best of times, even when I understand perfectly well the underlying concepts.

So what some researchers did, was they did some studies of certain groups of children.

There’s a condition called Specific Language Impairment.  Children with Specific Language Impairment by definition cannot also be autistic.  They’re mutually exclusive categories.  Children with SLI have the language problems similar to many autistic people, but not any of the other problems of autistic people.

So they did a test where they had children with SLI try to complete the Sally-Anne test.  They did just as badly as autistic people with the same level of language impairment.   If this were an autism-related problem rather than a language-related problem, that couldn’t possibly happen, because children with SLI are not autistic.

Then, they did a test where autistic children were tested on false beliefs, but in a context that did not require language processing.  The autistic children did as well as — and sometimes better than — nonautistic people did on the same test.

Until these tests were done, everyone assumed that autistic people’s bad performance on the standard Sally-Anne test was because we lacked some element of Theory of Mind — or lacked the whole thing.  Rather than that we did badly because we had language problems and the test requires some pretty high-level language processing.

And another thing that angered me, was the way that they seemed to deliberately set up tests to trip us up in this manner.  Like everyone knew all along, that there were autistic people who passed the Sally-Anne test just fine.  In fact, a very large minority of autistic people.  Not just a tiny number.  And yet they still said that the test results of the people who performed badly, reflected on the Theory of Mind abilities of all autistic people.   Even though there were people passing the test just fine.

But they didn’t stop there.  This is the part that pisses me off the most.  When autistic people did okay on a Sally-Anne test, we were simply given more and more linguistically difficult tests, until one of them finally tripped us up with its ridiculous number of nested sentence structures to process.  So “What do you think Sally thinks” became “What do you think Sally thinks about what Eric thinks?” Which in turn became “What do you think Sally thinks about what Eric things about what Maria thinks?”  Just keep nesting more and more levels of linguistic hell, until the autistic person is tripped up and fails the test.  Then, at that point, say that they lack a different ‘order’ of theory of mind.  You start saying “Well, some autistic people have first-order theory of mind but lack second-order or third-order theory of mind.”

That pisses me off because it was like they were deliberately setting us up to fail so that they could prove we really had the problem that the test showed we didn’t have after all.  So a test shows we have theory of mind. Devise a harder test until autistic people can’t do the test anymore.  Then claim that whatever the harder test is that finally made them fail, was. actually a more sophisticated test of the same thing you were testing them on in the first place.  So “They may have passed a simple theory of mind test, but more sophisticated theory of mind tests showed they still had problems with theory of mind after all.”  In this scenario, it is nearly impossible for an autistic person to win, even if their language problems are relatively subtle most of the time.

How to dismiss everything autistic people have to say about ourselves…

The results of these tests and more, have been used to dismiss the observations of actual autistic people about the workings of our own minds, for a very long time.  It’s true, of course, that everyone can be deceived about how their mind works, and this is one reason that cognitive research exists in the first place.  It exposes things in our cognitive blind spots about ourselves.  But even so, most research assumes that the average person knows at least something about their own mind.

So most psychological research assumes that people are basically accurate in reporting their experiences, but may have certain biases or blind spots that prevent them from understanding some aspects of those experiences.  Psychological research into autism assumes that autistic people can’t understand or report anything of value about ourselves unless it dovetails with what they already believe about us, and that our having insight into ourselves is the exception rather than the rule.  So most people are thought to be basically accurate with some blind spots, autistic people are thought to be all blind spot and little to no accuracy.

And this includes accuracy about things where literally the only person who can say how they experience something is themselves.  Like, if you think in pictures (which some autistic people and many nonautistic people also do), you know that because you see the pictures inside your mind.  Nobody else can come along and say “you’re just deluded, you don’t actually see pictures in your head”.  Because that’s a purely subjective experience, that only the person reporting it can know for sure whether it’s real, and how often it’s real, and in what manner it is real.  But many researchers act like autistic people can’t even know those things about ourselves.  We’re thought to have no capacity for any insight into uur inner lives and experiences.  Even though, when lots and lots of autistic people report a particular experience (spontaneously, without being pressured or coerced into believing it in some way), pretty much always that experience is eventually shown to be accurate, by scientific research.

Another thing that happens is that random things we can’t do get described as having to do with particular theories, when this makes no sense as an assumption.  For instance, our ability to read body language is constantly equated with mindblindness and lack of theory of mind.  Blind people can’t read body language, but people don’t say they’re constitutionally incapable of understanding that other people have subjective experiences of the world.  When autistic people can’t read body language, however, it is always cited as support for the idea that we are constitutionally incapable of understanding that other people have subjective experience of the world.  Even though our reasons for being unable to read body language may be as sensory-based as blind people’s are.   Similarly, language processing problems were for a long time — and it continues to this day, despite research showing why it’s a bad assumption to make — used as the core piece of evidence that autistic people lacked Theory of Mind.

So it’s sort of like, they already decided we lacked Theory of Mind, and then no matter what thing we could be shown to do badly at, that thing was written up as if the thing we did badly at, we did badly at because we lacked Theory of Mind.  So any and every ability we could be shown — rightly or wrongly — to be bad at, was a sign we had poor to nonexistent Theory of Mind.  And entire theories of what autism is, have arisen with those studies at the base of them.  And even though those study results have been seriously called into question by modern research, the Theory of Mind theory continues to be trotted out as if it is meaningful.  Even though it’s built with no foundation whatsoever.  It’s like we’ve done the research that removes the foundation, and yet we keep building on that foundation as if it’s still there.

And again understand — I have no training in research design and no training in autism.  And yet I can see all these holes in autism research, holes that actual well-regarded researchers such as Morton Gernsbacher have specifically and publicly praised me for noticing.  Imagine if I did have the training to understand research design much more intricately than I do.  Imagine what holes I’d be able to point out then, and what research I’d be able to design.

And I’m just one person.  There are tons of autistic people who are capable of similar insights into how messed up the current research is.  Autistic people are not automatically capable of seeing these holes.

Some of us buy into everything we’re told by Autism Experts about being autistic.  Researchers have specifically told me they picked me to work with because I pretty close to never do that these days (I certainly used to do it to a larger extent than I do now).  Whereas a lot of the autistic people they knew, filtered their experiences so heavily through things like Mindblindness and the Extreme Male Brain theory and the like, that the researchers were afraid they weren’t getting accurate information out of them, just regurgitated information.  There’s a related problem where autistic people will hear something from another autistic person, and assume that they have to be similar to that other autistic person.  So if Temple Grandin says autistic people are picture thinkers, suddenly you’ve got all these autistic people saying they’re picture thinkers because Temple Grandin is one.  Even if they’re actually not.

And there are good reasons autistic people do this, some of which are related to general human traits, some of which are related specifically to autistic traits, some of which are related to traits about how autistic people are treated throughout our lives.  So some autistic people may be doing it for reasons that relate to the thing where the more often you read a statement, the more true it feels, something that is true of most human beings whether autistic or not.  Some autistic people may be doing it for reasons that have to do with common autistic traits such as echolalia, poor spontaneous expressive language, language comprehension problems, and difficulty with certain aspects of sensory processing.  Some autistic people may be doing it because of how we have been treated all our lives for being autistic — if you grow up with nobody ever listening to you, being told always that you are wrong and can have no insight into yourself, being (deliberately or otherwise) ridiculed or punished whenever you communicate something of your experience accurately?  You may well start repeating what you’ve been taught to believe about yourself, rather than what you actually experience.

So there are lots of good reasons that autistic people can have trouble reporting our actual experiences around researchers.  But most of us can do it well at least some of the time.  And when we do so in large enough numbers, we usually turn out to be shown to be right.

I also worry about minorities within the broader group of autistic people.  Because I have a lot of traits that are relatively unusual for an autistic person who can use language.  Because those traits tend to make people less likely to develop language.  Not make it impossible, just make it harder.  So a larger number of autistic people without good enough language skills to describe their experiences, exist, than exist people like me who can at least some of the time describe our own experiences.  So anyway — at least within the realm of autistic people who can talk about our experiences, I often find myself an extreme minority.  An extreme minority both in my areas of greatest weakness and in my areas of greatest strength.  People like me get left out of the research results because research takes all autistic people in averaged-out form.  When you average out a huge group of people’s experiences, outliers like me get drowned in the greater sea of data, and you miss out on the great diversity that exists within a group of people like autistic people.

For too long, autistic people have been told who we are, instead of allowed to tell the world who we are.  Test like the Reading the Mind in the Eyes test tend to fill me with an instant mini-explosion of rage.  Because I can see each and every thing I just described to you.  Only I see it all at once.  Like just this ocean of wrongness that washes over me.  And I can see all these things wrong, and feel that the are wrong, and understand that they are wrong.  But until relatively recently, it was so hard to tell people why they were wrong, that most of the time I’d just splutter incoherently or tell them one or two things without giving them the whole picture.

This post is designed to give as broad a picture as I can of what’s wrong with that test, and what the consquences are of it being so wrong.  Please refer back to it as often as you have to, if you’re truly interested in figuring out what’s potentially wrong with both this and other tests used in autism research.  I may not be an academic writer, and I may not have credentials, but I’ve been told by people who are, that I do have insight they need and don’t have.  So do lots of autistic people who lack an education in this field.

If you use ideas from this in research or elsewhere, please give me credit.  Autistic people are often not given credit for our ideas when people mine them for research, so this is more important than usual.

When Orange Speaks Louder Than Words

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When Orange Speaks Louder Than Words

Mel wearing an orange shirt, dark glasses, and a brown Aussie hat.Fey and Mel nuzzling faces while Mel wears an orange shirt.Mel with only hir torso and arm visible, wearing an orange shirt with an orange crocheted shawl hanging off hir arm.An orange crochet project sitting on Mel's lap, bamboo yarn with a lot of shell stitches that is going to become a cardigan, with a metal crochet hook with a green handle.

Orange is the color of Autism Acceptance Month.  Because it’s the opposite of blue, and blue is the color that everyone is told to wear for Autism Awareness Month.  Which kind of sucks because my favorite colors, and nearly all of my clothes, are brown and blue.  And I used to really hate orange.  Sometimes I hate the term Autism Acceptance, too — I like the idea behind it, but I don’t like the way the term has become a meaningless buzzword in some people’s mouths.  Whether it’s parent groups who throw the word ‘autism acceptance’ around to sound current but don’t actually accept the slightest thing about their autistic children, or whether it’s autistic people who’ve fallen in love with the words and forgotten the meaning.  Either way, I like it as a concept but not as a buzzword.

Anyway, I hated orange.

Then my father died.  I was very close to my father.  As a way of remembering him, I began to wear his clothing. My mom sent me a bunch of his shirts, suspenders, watches, and other assorted clothing and jewelry.  And I began to wear his clothes, regardless of color.  

My father wore a lot of very colorful clothes.  I had to get used to that.  But most of the colors he had look surprisingly good on me.  This did surprise me because his skin was a very different color than mine, much darker.  But someone pointed out that while our skin was different in terms of darkness, the actual hue of our skin was nearly identical.  Which goes a long way to explaining why nearly any color that looked good on him, looks good on me.   The only place we seem to go wrong are on certain pastel shades that just look better against his shade of skin than mine.

Wearing my father’s clothes is more than a symbolic act of remembrance.  It helps me get inside of him.  It helps me find him inside of me.  It helps me find the parts of him that I didn’t even realize were there until he was already dead.  There’s something about it that makes me love him even more, makes me comfortable in my own skin, makes me see the many things about us that are alike as well as the differences.

And orange, most of all, has come to symbolize that entire process for me:  Finding something totally unexpected about my father that was also inside me all along.   Finding that many shades of orange (mostly darker shades, definitely not pastel peach shades) look good on me, sounds like a superficial thing.  But when it’s in the context of my father’s death and the meaning he had and continues to have in my life, there’s nothing superficial about it.  It’s about as deep as things get.  And that’s unexpected as well.

By the way, one thing I never take off is the circular necklace you can see in one of the pictures.  It’s a see-through locket containing hairs from my father’s beard, that he agreed to send me before he died.  I take it everywhere with me, and even a year ago when I was too delirious to understand that my father had died at all or what the necklace was, I still managed not to lose it despite losing some very important items during the same hospital stay. 

So I now appreciate orange a lot more than I used to, and I now have more orange things to wear this month.  Both because my father gave me orange clothes, and because since coming to view orange as symbolic of all these things, I have started making myself more orange clothing.  The shawl pictured above is something I crocheted myself, and the crochet project I am working on in the last picture will be a cardigan made out of bamboo yarn.  I’ve made other orange things as well.

I had other things planned to post this month.  I had a lot of things planned.  Like the song says, “Life is what happens to you when you’re busy making other plans.”  I’ve had tube problems and problems with my steroid levels that have taken up a lot of my time and energy lately.  So I think the very long post I had planned for Autism Acceptance Month is going to turn into a Blogging Against Disablism Day post for May 1st.  And this post will have to suffice for an Autism Acceptance Month post — right at the end of the month, of course.  But all these problems have made my inertia twenty times worse than usual, so getting posts out at all is a miracle and it’s a good thing that the posts I am talking about that I’d planned, are mostly already written months ago, and then stored in anticipation of this month.  Because I rightly guessed that I wouldn’t be able to write much for whatever reason when the time actually came around to have things ready.

Orange also stands for fire.  I used to think that fire meant the kind of anger problem I used to have, and I was afraid of my own fire.  But someone told me that my anger problem was misdirected fire.  That real fire, properly channeled, could mean something closer to passion.  And that’s when I began to truly integrate fire into who I was, and it flowed through me, and it was something I’d been missing for a long time.  Adrenal insufficiency sometimes feels like it tries to drain me of that fire, when I get close to an adrenal crisis, it’s like everything goes flat and deflated.  But when fire is properly flowing through me, it feels like finally being alive again.  So that’s another thing orange has come to mean to me. 

The things I’ve found about my dad in myself, by the way, are not irrelevant to Autism Acceptance Month.  My father and I are both autistic, and we share a lot of traits.  One of the traits that we share that I treasure the most, is our tendency to communicate with objects.  As in, both communicate by means of using objects, and experience communication (it’s the only word that really fits) between ourselves and supposedly-inanimate objects.  I knew to some degree this was true of my father, but it became much more apparent as he was dying, and even more apparent when I received many of his belongings after he died.  I arranged some of them into a memorial shrine, and any time I want to see him all I have to do is look through the objects and I can always find him by sensing the connections between them.  

Not a lot of autistic people talk about this, but a lot of autistic people very much do things like this.  And many people have told me they look at objects differently after seeing how I have interacted with objects after my father’s death.  People are used to seeing objects as dead in themselves.   And they are used to seeing interaction with objects as inferior to interactions with people.  They are used to seeing attachment to objects as an ‘attachment to material possessions’, like a consumerist thing.  So they are legitimately surprised when they see someone doing it completely differently than anything they’ve ever seen before.

Some people react well to that and some people react badly.  I’ve been lectured more times than I care to count, on how objects are not really alive and you can’t really interact with them.  Usually they talk to me in the same way they would talk to a five-year-old who believes in unicorns.  Other people have explained anthropomorphism to me at great length, totally neglecting the fact that I’m not in fact attributing human qualities to objects.  I interact with them, they interact back, I see them as alive, but being alive is not a human-specific quality.  And they are alive in a very specific way that has nothing to do with humans and nothing to do with the actual categories of animate and inanimate beings in general, and I interact with them as what they are to a degree that most people who see them as dead probably don’t. 

And usually the person doing the explaining manages to be incredibly condescending both to people like me, and to cultures that don’t differentiate as much between living and non-living creatures as modern Western culture does, or differentiate much differently.  The view is that we’re just simple-minded idiots who don’t yet know enough, aren’t yet highly evolved enough as a person or as a culture or both, to have figured out what Western science knows.  Never mind that their view of how we see things is usually mind-bogglingly simplistic in and of itself.

For some reason, such people seem to feel almost compelled to force their worldview on me.  Like I’m just one tiny little person who happens to be moving through a world full of people who mostly don’t share this worldview.  I’m hardly a threat to anyone.  But they seem to feel threatened enough that they have to quash any sign of difference anywhere they see it.  And I’m not just talking about nonautistic people, I’m also talking about autistic people who don’t happen to share this particular autistic trait.  (Because no autistic trait is universal, and quite often autism involves opposites a lot — so that both a trait and its polar opposite will be common autistic traits.  Sometimes even both showing up in the same person at different times.)

But what really amazes me are the people who are willing to have their mind changed about objects after they see how I interact with them.  They see that there is respect there.  They see that there is depth there.  They see that like many autistic people with similar traits, I move through a very sensual world full of richness and depth.  They see that I use objects to communicate with other people, to say important things that I can’t say with words.  They see the way I use objects to remember my father and to interact with him after his death.  They see that there is something deeply real here.  And they come to respect that, even when they don’t fully understand it.

And I never set out to cause them to respect me.  Any more than I set out to convince one of  friends that being gay is not a sin.  I actually told her I didn’t mind that she thought it was a sin, as long as she didn’t interfere with my life on that basis, and went on living my life around her as I was.  She said that just knowing me changed her mind about gay people on a religious level and on other levels.  And that’s not something I ever set out to do, in fact I was careful not to set out to change her mind.  But it happened anyway.  And that’s how this thing with the objects has happened:  I never intended it, in fact I never would have known the change was happening in some people if they hadn’t told me in private that I had changed their entire way of viewing how people interact with objects. But they did change their minds because of me, intended or not.

And I think that’s really important.  Sometimes people don’t come to accept autism — or aspects of autism, as the case may be — because we’ve been shoving things in their face.  Sometimes they come to accept autism, and autistic people, and autistic people’s ways of being in the world, because they spend enough time around us that they get to see us in a well-rounded context.  Not in terms of rhetoric but in terms of real life.  And seeing us, seeing how we live, seeing that our ways of doing things are legitimate even if they’re different than anything they’ve ever imagined before, that can be far more important for some people than anything we could have to say about the matter.

If saying things weren’t important to me, mind you, I wouldn’t be a blogger.  I may be a reluctant writer at times, but I’m definitely a writer.  But I also think there’s things in the world far more important than words.  And I also think there’s many different ways to communicate something, and writing is only one of them.  Not everyone can write, but everyone can make a contribution, deliberate or not, to the acceptance of people like us in the world at large.  And as writing this kind of post has become more and more difficult for me — it was never easy, but it’s getting much harder with time — I’m learning to very much value my ability to just exist and get things across by the way I exist around people.

There are a lot of things about being autistic that are hard, and I have to confess that lately it’s the harder things that have caught my attention more often.  The difficulty of keeping in touch with even my closest friends, to the point I’ve become almost completely socially isolated lately.  The ever-increasing level of inertia, which has snuck up on me because it looks very different after severe adrenal insufficiency completely reshaped the way I experience stress on a subjective level.  The stress levels that come not from emotional stress but from the sheer strain of having to function on an everyday basis — walking from one room to another, getting in and out of bed and chairs, going to the bathroom, making words, changing feeding tube dressings upwards of twelve times a day, going to new places that are visually overstimulating, anything involving getting information into or out of my brain, thinking on an intellectual level.  Things that most people don’t even know are skills, let alone difficult ones, because most of them are done automatically.  And all of these things are contributing to it not always feeling great to be autistic lately.

But orange brought me back to my father, and my father brings me back to objects, and objects bring me back to that rich world that my father and I both take part in.  Which brings me back to the way that just being who I am in front of people has changed their entire way of viewing objects and people’s relationships with them.  And that’s the good side of autism, and this is one of many ways that autism acceptance — the real thing —  can happen.  One person at a time, through living our lives as authentically as possible so that people can see exactly who we are and how we do things.  And when they see that, when they see who we are and how we live, some of them come to accept us on a deep level.   And not a lot of people are talking about that.

So I guess I’m glad for orange after all.

Autistic catatonia + adrenal insufficiency and/or myasthenia gravis.

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So as far as I know I’ve been/had:

  • Autistic since birth, probably since before birth, knowing the current science and the repetitive movements my mom felt inside her. But definitely atypical stuff from day one, which are all small things high when added up in retrospect amount to autism. Diagnosed age 14, again ages 18-19.
  • Autistic catatonia starting around age 12, diagnosed when the first major paper on it came out while I was 19. (Diagnosed by the same shrink who’d known me since I was 14.)
  • Neuromuscular junction disorder, probably myasthenia gravis or hereditary myasthenia, since I was 18 or 19. Diagnosed, provisionally, age 33 using a single fiber EMG.
  • Adrenal insufficiency, probably starting around the age of 27, Diagnosed at age 33 by which point it had become so severe they couldn’t find cortisol or ACTH in my blod. They assume it was there or I’d be dead, but they also assume I wouldn’t have survived much longer.,

So I had this big health crash when I was 27. One of the few measurable things we knew at the time was that my galvanic skin response, a measure of physical and emotional stress, went from very high to almost nonexistent. But we didn’t get around to figuring out it was adrenal insufficiency until much later, after way too many close calls in the hospital where I’d be seen for other conditions but be much sicker than I ought to be for these conditions.

I want to be clear I am talking about adrenal insufficiency. Not adrenal fatigue. Adrenal fatigue is a catch all term used by quacks for anyone experiencing fatigue, and requires no actual testing to confirm it, or bogus testing. It is dangerous because it prevents people from getting treatment for what they really have (which may even be genuine adrenal insufficiency) and can result in people getting strong steroids that are dangerous to the human body, who don’t need them p. vAdrenal insufficiency is where your body is not making enough cortisol and you can die from it. It’s usually easy to measure. I was diagnosed by a blood cortisol test, a blood ACTH test, another blood cortisol test for a baseline, and an ACTH stimulation test. That’s how real adrenal insufficiency is generally diagnosed.

Anyway my point is; some of my autistic catatonia traits have gotten better ever since the exact time of the health crash. In particular, I freeze for less often and for shorter durations. And I don’t anymore run around the house bouncing off the walls without any ability to control my movements. These things can happen they are just much rarer. I also have fewer full-body stims and rocking, and more hand-based stims. I still have trouble initiating movements, combining movements, crossing boundary lines, and doing things without being promoted verbally or physically. But I think I’m a little better at those things too.

This makes me wonder if there’s something about stress or cortisol (or ACTH) that plays a role in autistic catatonia. But I don’t really know who to ask. Lorna Wing is dead. I don’t trust Dirk Dhossche. I guess maybe Martha Leary and David Hill could shed some light on it, but I’ve lost their email addresses. There’s not a lot of researchers looking into autistic catatonia these days, even if there’s more than when I first showed signs.

Also, if you’re autistic and you have both autistic catatonia and adrenal insufficiency, I’d be interested to compare notes. But I don’t know anyone with both, so I’m not holding out a lot of hope there. I’m mentioning myasthenia gravis too just because the symptoms overlap with adrenal insufficiency to the point we were surprised to find I probably have both, not just one or the other. So it could be either one interacting with the autistic catatonia.

Also please don’t give me crap for using medical terminology here. It’s the only terminology I have and without it I couldn’t communicate.

 

Can you see the gaps?

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In the voids inside my mind
There’s an ocean, deep and dark
At the bottom of the ocean
There’s reflections of the stars

If you can see the stars
At the bottom, in the deep
If you can see the rainbows
That even the sun can’t reach

If you can see me dancing
Unaware of being watched
If you can see the world
Before a mind, before a thought

If you see distant reflections
Of reflections, of reflections
And if you can see the deep, the dark
The silence between worlds

If you can see the void
That stands in front of me
If you can see how full it is
And how empty it can be

If you see what it’s like
To not know at thirty
What they knew at three

But to know things
And to see things
That nobody else can see

Then maybe, just maybe
I can see you
And you can see me

What came before.

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If I could reach through the computer screen…

I want to hand you a lapis lazuli ball

So you can lose yourself in the deep blue

And be dazzled by the gold specks.

I want you to roll it over and over in your hand

Gently nose it to feel its texture

And weigh it in your hand.

I want to hand you my black tourmaline egg

So you can feel that unique texture

I want you to hold it while you sleep

And wake up to it, warm and slick in your hand

I want to hand you my amber ring

So you can watch the sunlight turn it into fire

And watch the sun set inside it glittering red, orange, and yellow

I want to do these things

So that I can say

We share these sensory experiences

And nothing can take that away

I want to hand things back and forth

And clack them together to hear their sounds

And rub them on our cheeks

And brush them against our fingertips

Then I want to hand you things too big to pick up:

The warmth and smell of a granite mountainside as the sun heats it up all day long.

The liquid sunlight melting across the coat of a cat who embodies sunlight well.

The whole cycle of life that takes place in the soil of a redwood forest. And the smell of that soil.

The deep rumbling sound of the Mother Tree when you’re curled up against it, surrounded by its invisible amethyst glow.

The feeling of lying in bed, but at the same time, being surrounded by a deep, glowing blue sky, as if pre-dawn or post-dusk. And listening to the music of the forest. Listening with my skin, listening with my eyes, listening with my fingertips, listening with my nose. Listening with everything more than my ears. Being wrapped in the song of the forest and the stars and the trees and the soil and the fungus, all singing, all singing inside me.

I know you can feel the layers of sensory experience. The layers of meaning that come before the meaning of mind. The things we were meant to forget, when we learned to think their way. The things we didn’t forget, the things that we retained no matter what we were told to forget. The stillness, the silence. The music in the silence, the growth and death and birth cycling endlessly.

I would hand you these things, if I could reach through a computer screen. And I would take whatever you handed back, and listen to it sing its unique song. And we could communicate the way we are meant to communicate. By what came before thought, by what came before sight and sound, touch and smell, by the resonance in what came before.

My worst social trait.

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One of the things I feel the most guilty about is my inability to stay connected with people I care about.

Generally, I can actively have between 1 and 3 friends, at most, at a time.  I may have other friends who are my friends, but I don’t communicate with them.  I don’t even remember, half the time, that they exist.  It’s gotten so bad sometimes that I live right down the hall from one of my closest friends in the world and I have sometimes forgotten that she exists for over a month at a time.

People who are not tied to me closely in a way where I have to communicate with them regularly, don’t stand a chance unless they are able to keep up the lines of communication, themselves.

I try as hard as I can to change this.  I feel horrible about people that I feel like I’ve picked up and then abandoned, so many times over the years.  And then, to make things worse, it can get to a situation where I only contact them when I absolutely need something out of them.  So then it becomes “I can’t even contact you most of the time when I just want to talk to you, but I can contact you when I need something from you.”  That feels horrible.  I know that it’s not the case that I’m just “using” them, I know this is all tied into autism and executive dysfunction and movement disorders and memory problems and inertia and a million other things, but it still feels like this is what’s going on, and I can’t help wondering if they secretly resent me for it.

Sometimes, to make matters worse, there are people I think about all the time, but I can’t write to them.  I get writer’s block every time I try.  I may somehow manage to think about them every day, but I can’t write.  And then the guilt builds up and only makes it harder to contact them.  I haven’t gotten into this cycle with very many people, but when I have it’s been almost impossible to get out of.

And then I try to explain these things to people I’m “supposed to” have ties to, people who are very different from me both socially and cognitively.  There’s one person who’s repeatedly said things to me like “I know you don’t like to write to me” and no matter how many times I explain what’s actually going on, they still say things like that, a lot.

And sometimes I wonder whether everyone except me knows all this about me.  Like whether there’s conversations like “Yeah, she says she likes you, but then she disappears and forgets about you and never talks to you again, except maybe if she needs something.”  I hope not.  But I don’t know.  I always feel like I have to warn my friends up-front that this happens, because it’s so hard for me to stay in touch with people no matter how much I actually care about them.

And it’s hard to deal with this in a world where people measure how much you care by how much you think about someone and stay in touch with them.  I have the problem that I can care very much about someone, and in fact have a very close relationship with them, yet forget about them for weeks or months at a time, and fail to communicate with them for years at a time.  If my friends want to maintain a relationship with me, then they have to put in a larger amount of effort staying in touch with me than they normally would with someone who is more easily able to stay in touch, and this doesn’t seem fair.

And it still doesn’t seem fair even knowing that this is related to specific cognitive limitations.

And I still feel like a failure as a friend, because I can’t communicate with people as much as I want to, or think about them as much as I want to, or both.  I still don’t know what makes the difference between people I think about all the time but can’t communicate with, and people I forget even exist.  It certainly isn’t how close a friend they are, nor is it physical proximity.  There’s someone in particular that I think about frequently, but who I have not written to in probably seven years.  They wrote to me once a few years ago and I badly wanted to write back but no matter how hard I tried, I couldn’t.  It was like bashing my head against a brick wall.  And this person is someone I once had daily contact with, someone I owe my life to.

As far as I know, there’s a few things that overlap to cause this problem.

One of them is a memory problem where unless a memory is specifically being triggered all the time, I’m not going to remember it.  I have a very good memory for things that are triggered in a specific way, and a lousy memory for everything else.  I have been known to be unable to eat because my cupboards were closed and I couldn’t see the food so I didn’t know food existed.  I have the same problem with people.  If the person is not actually there, or not actively communicating with me right at that instant, then I don’t remember they exist.

Another of them is a form of inertia, where actions have to be triggered in specific ways in order to happen, much like memory has to be triggered.  This means that simply thinking about doing something is not enough to make me able to do that thing.  I have to be in a situation that triggers the right reaction.  And writing to people is not an action that is easy for me to trigger into existence.  So even if I remember you exist, I’m not necessarily going to be able to write to you.  This also explains why I’m more able to write to someone if there’s something I need — the need triggers the action.  Although need doesn’t always trigger an action, it all has to align correctly (so there’s someone I needed something from for years and I never could write to him because it wasn’t exactly aligned right to trigger the action of writing).

Another of them is a trouble with multitasking.  Staying in touch with people is not a simple action like picking up a ball.  It is a complex action that involves many different cognitive and physical aspects all at once.  This means that in order to happen it’s not enough for one thing to be triggered by one other thing.  Everything has to line up perfectly.  If even one part of this large chain of events is out of place, then I’m not able to do it.

The multitasking problem is also evident not just in the amount of parts it takes to make the action happen, but also in terms of paying attention to multiple things at once.  There’s a reason that I am able to stay in touch with one or two people, but not more than that.  One person takes up all of my attention, then I have very little attention left over for anyone else.

And this is all besides the fact that I’m pretty introverted by nature and I don’t automatically spend my time thinking about people.  I think if I were extroverted I would still have trouble keeping in touch with people, but it would be less trouble because my mind would be more drawn to thinking about them all the time.  I can go a long time without thinking about people at all.  Even when I write for my blog, it is easier for me to pay attention to what I am saying, than it is to pay attention to all the people who might be reading it.  I am always genuinely surprised how many readers I have, and sometimes alarmed by that fact.  Even though I feel like I am someone who cares deeply about people in both the general and the particular, my mind is not automatically drawn to thinking about people, as a topic.  Right now I mostly think about crocheting.

I’m sure there’s other things, many of them autism-related, that play into this as well.  And it doesn’t just affect friends, it affects family.  I have a horrible time staying in touch with my family, and I feel constantly guilty about it.  (Worse when I get letters from relatives that contain assumptions like “I know you don’t like writing to me”… ouch.)  Especially since I get a lot of support from my brothers at times, but never ever talk to them, rarely talk to my father, and only sometimes talk to my mother.  It doesn’t matter how much I care about or love someone, it can’t overcome all these difficulties.

So if you ever notice this pattern in my communication with you (this includes my inability, sometimes, to respond to blog comments), try to understand that it’s not personal.  I only have one person in my life that I’m in consistent contact with right now, and another person that I’m in semi-consistent contact with, and that’s usually about my limit right there.  Three people happens sometimes but it’s rare.  Right now it’s one and a half people — one very consistent contact (Anne), one less consistent contact (Laura), and a lot of very, very scattered contact with other friends and family.  And I can even forget Anne exists, even though that doesn’t happen as often as it would with other people because of a type of connection we share that as far as I know is completely unique — I can’t form that connection with people on command, it just exists, and I’ve never had that type of connection with anyone else.  And even with that deep, intimate connection I can occasionally forget her for a week or so.

And I’m very sorry, to the 15+ people I’ve cared deeply about and almost entirely lost contact with over the years.  If I could change anything about myself socially, this would be it.  But I’ve never been able to change it.  It makes me feel like I’m not capable of “real” friendship, even though I know I am.  I am lucky that I have some very tolerant friends.  People who take such lapses in contact personally, won’t do well in a friendship with me.  Not that I judge you if you do take it personally on an emotional level — we just may not be compatible if you do.   But do try to understand that my level of contact with you is not at all related to how much I love or care about you.

Ballastexistenz: Expressions of PosAutivity: #AutismPositivity2014, Crocheting and Dancing

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Crocheting and dancing. from Mel Baggs on Vimeo.

Crocheting is my new perseveration.  You can call what I was doing in this video stimming, dancing, or whatever you want, but it’s how my body moved naturally and it felt great.

I was making granny hexagons for an afghan that’s turned into an all-purpose piece of fabric, that I’ve used as a blanket, a shawl, and a skirt.  I’ve also made a wide variety of other things, shown below:

crochetafghanshawl crochetafghanskirt crochetbabyblanket crochetbooties01 crochetfuzzyyellowhat crochetowl01 crochetowl02 crochetpurplefuzzyhat crochetpurplehat01 crochetscarf01 crochetshawlkeys crochetshawlsyellowbamboo crochetyellowhat01 crochetyellowshawlbutton crochetafghanblanket crochetafghan01

Closeup of a crocheted afghan worn as a shawl, with a shawl pin.

 

There’s hats, scarves, shawls, baby booties, and even a stuffed owl with a jar inside.

Crocheting is pretty much all I do these days.  It’s nice to have something I can do with my hands that doesn’t require language or strenuous activity.  I’m running into a lot of financial trouble because I keep buying yarn even when I can’t afford it.  But I love crocheting, and it’s completely taken over my life.

I could never crochet or knit, growing up.  It was visually too confusing to find where the stitches were.  I had some of that problem when I was trying to learn this time, but apparently my visual processing is finally mature enough that I can distinguish what a stitch looks like.  Once I figured that out, the rest became easy, and I took off really fast.

As an autistic person, and my particular type of autistic person, I need things to do that aren’t words, aren’t abstract, and aren’t surfing the net.  I’ve been looking for something like this a long time.  I was trying to get into sewing, when I found my old childhood crochet hooks in my sewing box.  I never did get into sewing, because I took off so fast with crochet I haven’t looked back.  It’s my only real interest at this point, and I bore people by trying to talk about it.  But I love it.  I always have at least three projects going at once that I switch off between depending on how I’m feeling.

What does this have to do with autism?  Besides the ‘special interest’ thing, the basic thing is, I’m an autistic person and this is how I enjoy my life right now, and that’s all that matters.  Also in the video I’m dancing to the autistic band, The Raventones.  The movements make more sense with their music playing in the background.  ;-)

Feeding tubes and weird ideas

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My favorie BADD post: Tube-ageddon.

I haven't had much time to write anything here about the hell I went through getting my GJ tube. I had every indication for a GJ tube. I had gastroparesis so bad it was starting to affect my breathing, in a way that doctors said was likely to result in infection after infection until I died. From the emergency room onward, doctors were saying my best hope was to get a feeding tube.

Yet the pressure I got from doctors, while in the hospital for one of those infections, was to just keep getting infections, go home, wait to die. Most of them wouldn't say that outright. But some of them did. Some of them we confronted and they absolutely agreed that the only alternative to the tube was death — which could have happened to me by now, without the tube. But they still insisted on telling me not to get the tube, basically that I was better off dead than with a tube. We had to rally a bunch of people on the Internet to call the hospital before they suddenly changed their tune. My pulmonologist told me she could tell exactly when I started getting people calling the hospital, because the tone in my charts changed instantly to “let's get her the tube after all”.

Most people think of all feeding tubes as the same, all reasons for getting them as the same, and so they believe in false generalizations about their capacity to prevent lung infections, or indeed cause them. But they aren't all the same. They're all different, and the reasons for getting them are all different.

I have gastroparesis. That means my stomach is partially paralyzed. In my case it became severe before it was diagnosed last year and confirmed with testing this year. It's probably due to neuromuscular problems inherited from my mother, who has autonomic neuropathy among other things, a common cause of gastroparesis. My symptoms are similar to hers so doctors are assuming whatever we have is related. Anyway, it makes food remain in the stomach a long time. After awhile, this means that you can't eat very much and you drop a lot of weight. (I may still be fat, but they tell me by the end I was burning muscle.) by the end I was having trouble keeping down two small cartons of Boost a day, which isn't enough calories to live on. I was already on a liquid diet so there was no less food I could keep eating.

It also meant that the stuff staying in my stomach was riding up my esophagus again on gas bubbles formed by food sitting in my stomach for ages. I could feel it happening several times a day. I'd belch and food or bile would ride up with it. If this happened overnight, my bipap machine would shove the stomach contents down into my lungs from my esophagus. This began happening several times a week, and from January until March I had about five lung infections requiring antibiotics. I never stopped taking antibiotics, by the time one course was over I'd be on the next. Which is dangerous in its own right.

So when I showed up in the ER a few days after a CT scan showing what they called a “ground glass appearance”, they had no problem admitting me into the hospital, and even in the emergency room they were telling me if I wanted to live I needed a GJ tube. This wasn't news to me. They had been talking about a feeding tube since last fall, when one more nausea med added to the five they'd started me on, made me able to go home without one instead. I'd been discussing with my friends what kind of feeding tube served my needs best as a person with gastroparesis. And the GJ tube had always seemed like the best option.

A GJ tube is like a combination of a G tube and a J tube. Half of it goes into the stomach, which is a G tube. The other part goes into the first part of the small intestines, which is the J tube. The G tube gives you the ability to drain your stomach contents out into a cup, and dump them down the toilet. This means that if you do it often enough, you won't have anything building up in there and going up into your lungs. Right now, even bile and stomach acid can build up to dangerous amounts because of my stomach not emptying often enough, so I take acid reducers and I drain my G tube several times a day.

The J tube portion is the part that stuff comes in through. I eat through it. I drink through it. I get all of my medications through it. This means that nothing has to come in through my stomach. Which means we are bypassing the worst part of my digestive system. Not that the rest of my digestive system is wonderful. My esophagus is slow, my stomach is slow, and my bowels have been producing blockages since I was a teenager. But with liquid food going into my small intestine at a fairly slow rate (one feeding in roughly twenty four hours, I wasn't able to handle the twelve hour version without getting very sick) I seem to be able to handle things much better than when it was going in my stomach. I love it. It's so much easier than feeling horribly sick all the time.

I still take nausea meds, but half of them have been changed to PRN instead of daily. So daily I take Phenergan, Reglan (which speeds up my digestive system), and Marinol. And I can also take Benadryl. Lorazepam, and Zofran as needed. I used to have to take all six of those things every day, so this has really cut back on the amount of medication I need, which is good because every single one of these meds is severely sedating and it was badly affecting my ability to think straight. If I were still trying to eat, I would be taking every single one of those nausea meds at the maximum dose, and still wouldn't be able to eat enough to maintain my weight.

[Photo of me holding my tube. The J tube section is visible, the G tube is hidden behind my hand, and there's a little cloth thing from Trendie Tubies around the base, with owls on it.]

But I had to fight for this tube. Even though it was the only way to save my life. I had to fight against people who were certain I was better off dead. And I needed the help of a lot of people on the Internet, to do it. When I did get the tube, it was done without a working anesthetic. And even though the local anesthesia didn't work on me, even though I was yelling and screaming, they didn't stop to give me more, they just kept telling me that the Versed meant I wouldn't remember it later. Yeah right. It seemed like the entire process of getting the tube was one giant clusterfuck after another, and like people were making it as hard for me as they possibly could. (Later, when I had to get the tube replaced, we discovered that Propofol is the med, in combination with others, that really does the trick to keep me unaware of what's happening.) They treated me like a child, repeatedly expressing the fear that I would pull the tube out like young children often do, and blaming me when part of the tube got lodged inside me, probably as a result of over zealous physical therapy early on that was a clusterfuck in its own right.

But I got the tube and I couldn't be happier with it. I feel happier and healthier. After aspirating reflux several times a week for months, I haven't aspirated a single time in the month or so I've had the tube. My nausea is well controlled. My brain and body work better. Despite a couple complications since then, it's still the best thing medically that's happened to me in the past year. And I'm still alive, which even by now I might not have been if I kept getting infection after infection.

[The x ray showing the tube inside my body.]

Why did I have to fight so hard for it? I see two major reasons. One is that I'm perceived by medical professionals as someone whose life doesn't matter much, doesn't have much quality of life. I'm autistic, they read me as severely cognitively impaired, I am in bed all the time, they don't see that I enjoy living as much as anyone else does, and they make that decision somewhere in their heads without even noticing.

The other reason is the way medical professionals see feeding tubes. I've been trying to read the writing of nurses and doctors to find out their views on these things. Not just the horrible ones. The ones who snark at patients on their blogs. But the ones who think they're compassionate and sympathetic and good at their jobs. But in one area that makes no difference:

They all think of feeding tubes as the beginning of the end. They see getting a feeding tube as the first sign that your life as over. Possibly that you belong in a nursing home, as if anyone does. When I made out my living will, the first question of “Where do you draw the line where you want to stop living?” was whether I wanted to live if it meant I needed a feeding tube. They see people with feeding tubes as the first stop on the route to a living death. Other things they see that way are using a ventilator, having a trach, needing any sort of similar mechanical assistance to survive.

My friends see it a different way. They see me as some cool kind of cyborg, with the oxygen, the feeding tube, and the Interstim implant that prevents spasticity in my urethra, allowing me to urinate. They say the sounds my oxygen concentrator makes sound almost steampunk. But then all my friends are disabled, they see adaptive equipment as cool, and as a means to living, not a sign you're dying.

Medical professionals have been shown time and time again, to rate disabled people's quality of life lower than we rate our own quality of life. And yet time and time again, they see themselves as the experts on what our real quality of life is. One reason I try to keep my lungs and my guts in good condition is that as a person who is autistic and physically disabled, I know that if I ever got bad enough to need a transplant, I'd probably die. Because they would take one look at how I sound on paper, and they would decide my life wasn't as worth living as that of a twenty year old who wasn't disabled except for the effects of their lung problems or digestive problems. (Lung transplant is the end of the line for severe bronchiectasis. My bronchiectasis is mild, I'm working hard at keeping it that way. Transplant is also the end of the line for very severe gastroparesis combined with other gut problems. I'm hoping I don't get to that point despite severe gastroparesis. Given how hard it was just to get a feeding tube, which is the standard treatment when you start aspirating this much and being unable to eat even a liquid diet, I don't know that I stand a chance at making the transplant list should I need one.)

I also had trouble getting home. People were asking me if I belonged in a nursing home, or at least in twenty four hour care. I'm not sure why. It's not like it's hard to care for a GJ tube. It's unusual, but it's certainly easier than my old med regimen, which was truly difficult and time consuming. Now we just mix them up, put them in a syringe, and stick them straight into the tube. Easy. Eating is easier too, no more worrying I will throw up, and you only need to set up the food once a day and press a button on a feeding pump. But everyone has this illusion that it's incredibly difficult, and the VNA loves to take people with tubes and stick us in nursing homes claiming they can no longer care for us on the outside.

[The feeding pump on an IV pole with the food (Osmolite, low fat, high protein, no fiber) hanging above it.]

I still don't understand what the big deal is supposed to be. By the time you get a feeding tube, eating is really hard. Either you're having swallowing problems, or something is wrong with your stomach. In my case, my stomach was emptying so slowly that I was constantly severely nauseated no matter how little I ate, I was dropping weight way too fast, and I was aspirating reflux caused by all the food sitting around for ages. I was quite possibly going to die from repeated infections. How the hell is a feeding tube supposed to be worse than that?

I can't even begin to comprehend the fear of these things. I mean I literally can't do it. It makes no sense. It's all based in prejudice. It has nothing to do with the reality of a feeding tube.

I thought the worst part would be not being able to eat. The most I can do is drink a tiny bit of ginger ale, and I have to be very careful even with that. But I don't miss food. The feeding tube ensures that I am never hungry, and always have the nutrients I need. The only times I have ever started craving food, were two separate days where I spent all day at the emergency room unable to use my tube. Each time I came home and wanted to eat or drink something I didn't normally want to eat or drink. But when I'm getting food regularly, it's not a problem. I barely miss eating at all. I never even think about it. Even the vivid dreams I'd been having about all different kinds of food, all those months on Ensure, have gone away. My body seems perfectly satisfied with what it's getting, and it doesn't crave things unless I can't use the tube.

And it makes everything easier. Food is easier. Medication is easier. Absolutely nothing is any harder than normal. It's more like dealing with something easy and mechanical, than dealing with anything hard. We did learn the hard way to flush it with coke after every medication, because by the time there was a clog, you couldn't get enough coke in to dissolve it. So we are dissolving the clogs before they can even form, by leaving coke in for awhile after every single time we use meds. I've also discovered it's possible to reduce the pressure inside me — which can prevent the meds and water from flowing into me as easily — by relaxing my body, especially my rectum, and then everything usually flows in pretty easily. So there are a few tricks, but it has overall been much easier than my life was before I got the tube.

So what is so scary? I don't know. I can't find anything at all scary about this. It doesn't mean anything horrible. It means I'm alive. Being alive is a good thing. I don't fear death, but I only get one chance at life, and I don't want to die just because someone else has decided my life isn't worth enough to them. And so I'm very much interested in anything that will keep me alive longer, whether it's a feeding tube or any other “scary” device used for keeping disabled people around longer than used to be possible.

A lot of people I know have those devices, the ones that medical professionals think your life is over. Feeding tubes. Trachs. Ventilators. Catheters. Ostomies. Central lines. All those things that seem to scare people to death, even though there's nothing scary about them. They prolong life, not end it. And I'm furious at every single doctor who urged me to go home and die rather than get this feeding tube and get a chance to live longer. That is simply not their decision to make, and they were bound and determined to make it for me until I got enough people on my side to convince them that the entire world was watching the crap they were trying to pull.

I am going to work as hard as I can, to change hospital policy so that nobody gets pressured in the way I did. It's incredibly difficult to deal with pressure to die, when you're already sick and exhausted and have no energy to fight back. And they do it in sneaky ways, so that if I had been delirious or something, which I often am in the hospital, I might not have recognized what they were trying to do. My experiences are far from unusual, many disabled people have been encouraged to die rather than get a feeding tube, or a vent, or something else that would allow us to live. My mother, who has many of the same conditions I do, is going through a mess where doctor after doctor refuses to treat her or perform surgery on her, and she keeps having to go back to the Mayo clinic because they're the only ones who seem to be committed to making sure she can live as long as possible. And as a disabled senior citizen way below the poverty line, she gets the “your life isn't worth it to us” thing from at least three different angles. This stuff isn't unique to my life, the pressure to die is everywhere.

But most disabled people, like most people in general, prefer to be alive. Being disabled rarely changes that fact, not on its own. And the fact that anyone thinks we ought not to, that their pity goes so far as to be a death wish aimed at another person, is so disgusting I don't even have words for it. But they are the ones who are disgusted at my advance directive, which tells them to keep me alive no matter what. I can hear it in the sound of their voice when they ask me about advance directives. Advance directives are supposed to be about making your own choices, but the choice to live is the least respected among them. They would rather I not be here by now, rather I got my sixth, seventh, eighth infection until my lungs finally gave out. I refuse to give them the satisfaction. I love being alive and a tube doesn't change that one bit, in fact it makes my life better.

 

A bunch of stuff that needed saying

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The following stuff is important stuff I wrote elsewhere on the net. If some of what I'm saying doesn't make sense, ignore it, it's just context that I'm not able to describe right now. The main thrust of what I'm saying should make sense without understanding the full context of what I wrote. And I can't rewrite it all right now for this blog. So the following is pretty much as I wrote it. Also sorry for all caps in places, it was because where I was writing it I couldn't use other forms of emphasis. And please don't assume that this is all about autism. Everyone always assumes that everything I say is all about autism. It isn't. Most of it isn't. Not even the stuff that talks about autism is all about autism. I am fed up with just about every such assumption because my world isn't made up of only or mainly autistic people and when I talk about things I always get replies saying “This applies to people without autism too” and I want to say “no shit Sherlock, that's what I meant in the firs

This turned into a long post, and it may not apply to the people I’m replying too, but this conversation just brought up a lot of things I’ve been thinking but having trouble saying.

Thank you for writing that. It’s really important.

Also another point I want to make. There are many autistic people whose best method of communication is nonverbal. By which I mean, not speech, not writing. Some of us this is true of, can communicate well by speech or typing also. Some of us can’t. But we usually have trouble with receptive language — either some of the time, all of the time, or especially, during the early formative years of our lives. I’m one such person.

Most people don’t know this because the current theories of autism all involve us being terrible at nonverbal communication. By which people mean, terrible at one specific kind of nonverbal communication that most nonautistic people are good at. Also, most autistic people who can talk about their experiences in words, are (or believe themselves to be) bad at nonverbal communication, and their experiences get seen as applying to all of us, when this is not true.

So for many of us — nonverbal communication, and the world of things outside of words, are our best way of communicating. Whether we can also use words or not. I wrote about one such group of autistic people in my contribution (“Untitled”) to the Loud Hands anthology. Because I want people to know we exist. Because I want other people like me to know they aren’t alone, in an autistic community made up mostly of people who experience themselves as terrible at nonverbal communication. Where people even say that autistic communities are communities where people can use text or other forms of language, rather than having to deal with nonverbal communication. Even though there’s plenty of us who do better in person, BECAUSE we communicate best nonverbally, because words, whether we can do them or not, whether we are or seem good at them or not, are so hard and so difficult and so painful to keep using.

There are entire groups of autistic people out there who communicate with each other using our own unique forms of body language that are different from nonautistic body language, different from other autistic people’s body language, specific to ourselves, specific to each other. Who communicate best reading each others writing, looking for the patterns that exist between the words, rather than inside the words themselves. Who communicate best by exchanging objects, by arranging objects and other things around ourselves in ways that each other can read easier than we can read any form of words. Who share the most intimate forms of communication, outside of words, outside of anything that can be described easily, in between everything, seeing each other to the core of our awareness. Who see layers upon layers of meaning outside of any form of words.

In “Untitled” I was writing about my favorite communication ever, my video chats with AnneC (and her cats, when they show up, which Shadow absolutely loves communicating with me over video and reminds her every Friday at the right time because he loves it so much). I don’t necessarily do the best at visual stuff the way most people think of it. But I can see the patterns of movement in other people, including cats, whether or not I see them well in the usual forms of visual perception. And those patterns of movement tell me more than any word ever could.

I can even read nonautistic people fairly well at times — just not in the ways nonautistic people read each other well. That’s one of the problems with nonautistic research into autistic people’s abilities to understand nonverbal communication. Most of it relies on the understanding and use of words at the same time as understanding the nonverbal communication. And most of it relies on the kinds of nonverbal communication that nonautistic people are most aware of. This frustrates me to no end — how can people research forms of understanding that they don’t themselves have and therefore they don’t themselves understand even exists? I’ve actually told researchers ways they can research autistic people’s understanding of nonverbal communication without having to resort to the faulty methods they usually use.

And one researcher told me, when I asked, that every parent of an autistic child she ever met said that their child picked up easily on things like stress in the household, but that SHE ACTUALLY DISREGARDED IT UNTIL I ASKED HER, BECAUSE SHE’D BEEN TAUGHT THAT AUTISTIC PEOPLE COULDN’T READ BODY LANGUAGE. I’m totally serious. If researchers are that biased themselves, how can they possibly hope to even notice that we can understand things they assume we don’t understand?! I taught that researcher a bunch of very simple ways to test that without relying on the painfully stupid research methods that guarantee researchers will find only what they expect to find — relying on us to use and understand words, relying on our understanding of actors and stage conventions rather than real people’s real nonverbal communication, relying on nonautistic people’s limited ability to read autistic body language, all sorts of other flaws that seem obvious but that researchers themselves seem never to notice. So hopefully she will set up some real experiments that show our real abilities.

Anyway. Back to what I was saying. There’s entire subgroups of autistic people out there _ not just my own — who rely on nonverbal means of understanding the world, and nonverbal means of communication. That’s one reason I usually put myself in my videos — because I know that certain other autistic people will be able to read me like a book, even if nonautistic people usually can’t. And that nonverbal communication is a crucial part of my videos. (See why the entire first half of “In My Language” has no words in it. I was trying to make a point about the best way I communicate, the best way many people communicate, autistic or not, verbal or not. Mostly lost on people, who think it’s a video about autism. It’s not. It’s a video about communication and understanding and personhood, that happens to be made by an autistic person. Big difference. I told CNN why I really made the video, and they left out that part of the interview in favor of putting their words in my mouth. I think my real intent was too political for them.)

Anyway. I may be a writer, but my real best form of communication has nothing to do with words. I use words because I have to. Because most people won’t understand me if I don’t. I don’t use them because I like them, or because I “can’t do nonverbal communication so text is best for me”, or any of the usual reasons most people assume. If I could never use language again, spoken or written, I would be really happy. But the world won’t let me do that, so I carry on using a means of communication that is outright painful for me.

I don’t know the people in the video, but I know that the way their bodies move makes intuitive sense to me and communicates things whether they intend it to be so or not. (The forms of nonverbal communication I understand best are unintentional, in fact. That’s one reason tests using actors don’t work on me. I know an autistic woman who failed a test of nonverbal communication because it used actors and she kept describing their real feelings instead of their acted ones. What this says about nonautistic people’s understanding of nonverbal communication is… interesting.) Whether they are able to use spoken language or not, the video would lose a lot if it only relied on showing them speaking or typing the words.

And I really dislike a lot of the self-advocacy movement for relying mostly on the self-advocacy that happens through words, written or spoken. This leaves out people who can’t do either but who are nonetheless quite capable of advocating for themselves through their actions and movements. If I hadn’t spent a lot of my life forcing myself to do words, I might be such a person, so I am always aware of this. Words are not natural to me the way they are to some autistic people. They’re difficult and my development could have gone either way. There are also people who, no matter how much effort they put in, could never have used or understood words, and they are also extremely important, and they are also capable of self-advocacy, and they are still capable of communication that is more full of meaning than the communication of many people who use words.

I wish there were videos using their communication — which by definition wouldn’t involve words. Both people who would have been able to use words had they put in a crapload of effort at critical times in their development, and people who would never be able to use them no matter what. Such people exist. I sometimes wonder if they are too inconvenient for some autistic people to remember. I hate when people tell parents, “If you just gave your child a communication device they would be able to type words (or use picture symbols) and everything would be solved.” You don’t know that. You just can’t possibly know that. I hear that a lot, this idea that autistic people would all be able to communicate in words if only they were given a means to type them instead of speak them. And it’s so not true that its utterly ridiculous. I hear it both from people whose main way of communicating is speech, and also from people who use typing, and people who use both. It’s wishful thinking and it’s not true. There are people whose understanding of the world is just like a typical “aspie” except they couldn’t speak for motor reasons, and they are the most likely of those who use typing, to believe this myth.

Reality is that there are lots of people who will either never be able to use words, never be able to understand words, or both. Or whose use or understanding is so limited that they will never be able to use words as their primary means of communication. But they do communicate, whether the communication is intentional or not. And they do matter. And they are capable of self-advocacy. And they should be included in self-advocacy movements if those movements ever expect to represent autistic people, developmentally disabled people, cognitively disabled people, disabled people in general, whatever group is trying to represent itself in that movement. And in order to include them, you have to show their movements and their sounds and all the things they do that aren’t words.

It’s true that many people who are thought not to be able to use or understand language, actually are. And it’s terrible that they are overlooked. But in their desire not to overlook such people, many people claim that all disabled people who can’t communicate through speech fall under this umbrella. And that’s simply not true. In order to communicate with people who will never use words, you have to learn their language. (And surprise, that’s one thing that “In My Language” was actually about. And it would be about that whether I used typing or speech to communicate — either one would be my “second language”, and as such I can easily, easily envision a situation where I never learned and never would learn to use speech or typing, both of which I used at different points in my life.) And each person has one. Sometimes several people have a language that is in common but is not words. Sometimes each one has a separate way of communicating that is not words. But either way, you have to learn how they communicate, not force them to either communicate how you best communicate, or else be considered “non-communicative” for the rest of their life. And yes it’s possible to get consent to use their communication, it’s just sometimes harder work than asking a yes or no question in words.

And a community that doesn’t include such people isn’t my community. The developmental disability community is far better at including such people than the autistic community is, even though not all of the DD community manages it either. One reason I’ve spent a lot of time communicating with people who can’t use words in any form is because I’ve been in the developmental disability system for pretty much my entire adult life and have spent a lot of time with a wide variety of people. And I’ve spent a lot of time communicating with people who can’t and may never use speech or typing or even picture boards. And that’s something that certain segments of the autistic community are sorely missing. Even parts of the autistic community that involve people who don’t use speech, are often made up of only those people who were able to learn typing, and often put forth the (false) idea that everyone could learn typing if only they tried hard enough or were exposed to the proper teaching methods.

The response someone made is true: Some of the people in the video use typing, so they could never be shown speaking the words in the video. But I’d like to go further than people who use speech and people who use typing, because unlike a lot of people, my social world is made up of a lot of people who can’t do either one. And also made up of a lot of people who, even if they can use speech, typing, or both, those are not their best means of communication, and it would be better to show us using our best means of communication rather than merely the form of using words. Not everyone has words but everyone has a voice and a means of communicating. And not everyone who uses words sees words as their primary voice or their primary means of understanding things, and that needs to be respected. And I’m sick to death of spending time in communities where most people seem to miss these facts, and automatically see having a voice as the same as using speech or at least using language.

Communication page I used to handle that invasive woman I met.

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It’s been quite some time since I posted my letter to the woman who accosted me on my way to the para transit van. But I wanted to update people on how I handled the situation when she approached me the next day. Which was a success.

I knew that I have trouble coming up with new language of any kind in high stress situations, especially involving people with bad boundaries. So I spent most of the night creating a new page for my communication software.

I use Proloquo or Proloquo2Go for most of my communication these days. My super-expensive, clunky Dynavox has been collecting dust in a corner ever since I first got Proloquo2Go years ago. Proloquo2Go has two separate sections. One where you type and it speaks out loud. Another where you can say something by pressing on one or more pictures.

I created a page where everything was about boundaries in one way or another. These are things I’m often unable to say in real time. I have a hard time remembering its possible to say these things. And coming up with words. And monitoring my emotions in response to situations. And communicating around invasive people. And pushing words past what feels like a barrier between my mind and everything else. Let alone all this and more at once.

Here’s the page I created:

[Description: A communication page arranged as a grid with one sentence per square. Each one has one word or sentence. Words in parentheses are what the previous sentence is an abbreviation for: Back off. Don’t patronize… (Don’t patronize me.) Don’t talk to me. Don’t touch me. Don’t want talk about. (I don’t want to talk about it.) Fuck off. Get out of my face. Go away. I am not a child. I don’t care. I don’t do eye contact. I’m not kidding. I’ve a right to be mad. (I have a right to be mad.) it’s not funny. Leave me alone. Now. Please. Stay away from me. Stop it right now. Stop. That hurts my brain. You put me in danger. (You’re putting me in danger.) you’re hurting me. You’re too close to me.]

I tried to make it so that I could use various levels of politeness, forcefulness, and rudeness depending on the situation. One way I did this was with different icons. Obviously, “leave me alone” and “fuck off” are very different. But another way I did it was by adding icons for “please” and “now”, the two squares outlined in blue. This made it so, by hitting two buttons in a row, I could say “please leave me alone” or “leave me alone now”. So I have a pretty good variety of intensity I can use.

I was expecting her the next day. She had said she wanted to meet me in the morning. So I prepared myself. I tried to stay connected and aware of my surroundings. She sat down at the table next to me. And she watched until my staff person had to leave me alone for a minute. Then she approached.

Because I was expecting her, I was prepared for the onslaught people like her carry with them. That thing where when they get close to you, it almost feels as if they are overlapping with you. So in my head I made sure to mentally separate us, which made it easier to communicate. I hit “please” and “stay away from me”. She yammered some sort of explanation and went back to her table.

I maintained deliberate mental distance the rest of the morning that I was anywhere near her. My case manager later made an effort to find her. She’d heard the story from a guy who witnessed it, and she wanted to report this woman. But we never found her. And things went just fine the rest of the day.

In any alternate universes where I didn’t make this communication page, the likely outcome is much worse. I would have been pretty much trapped around this woman, and that would have done a kind of emotional damage that takes time to recover from. It’s nothing that has any kind of official name, it just leaves me more vulnerable to other people like her until I can reverse it.

Another important thing I did besides create the communication page, was to rehearse everything many times beforehand. If I don’t do something like this, it’s hard to use the communication icons. Contrary to popular belief, just having the ability to type or use icons, doesn’t solve every communication problem.

And without rehearsing, there’s a big chance I’ll never use a page like this. My fingers won’t know where to go. My mind won’t remember it’s possible. My eyes won’t remember to look through the page to find possible things to say. My will won’t be able to push through the barrier between experience and expression. And much more. That’s a lot of places for communication to break down.

It is absolutely vital that people who use communication devices, have ways to respond to violations of our basic boundaries. Disabled people are far more likely than others to have others behave invasively with us, ranging from subtle to violent. People teach us from our earliest years onward that such invasion is normal, natural, and something we should accept without complaint. We have to have the means to say no.

And we have to have the means to say no forcefully, even rudely. We need to be able to use cuss words, even if we have the kind of personality that would never use them. Sometimes the only reason that we appear unnaturally even-tempered is because we’ve never been allowed to be otherwise. We have the right to say fuck off, but people don’t always give us the ability to do so.

Of course, even if we say things like that, there’s no guarantee anyone will listen. Some people’s reactions when I get mad, remind me of the way people giggle at my cat when she swipes someone who touched her in a way that hurts her. It’s like she and I aren’t real enough to them, so our anger is cute and funny.

I’ll also never forget the time someone made an asinine comment when I was out in public. I typed a response and stuck the speaker up to his ear so he could hear it. All his friends burst out laughing. One of them said “Dude, that guy’s cussing you out using a machine!” Which is… so much not the response I was going for.

But still. We need to be able to have the full range of responses that other people can have. To do otherwise smacks too much of that idea that we should be passive and sweet all the time. Being able to say no, being able to cuss, being able to tell people to go away and leave us alone, these are some of the most important things people with communication impairments can learn to say. But often people don’t teach us that stuff, they don’t want us to know it.

Another important thing: Communication pages like this are not just for people who absolutely can’t ever speak. They are for anyone, anywhere, who for whatever reason would be unable to say things like this in situations where they need to be able to say it.

I’ve run into too many people lately who desperately need something like this, but are afraid to use it because they don’t fit the popular image of someone who needs a communication device. Some of them have even been told that it’s horrible or disrespectful of them to even consider using a communication device. But my position on it is that having the most effective communication method possible can result in better emotional and physical health, in some situations it can even save lives.

So given all that? If something like this can make your life better, for any reason at all. Whether you can’t ever speak, can only sometimes speak, can only speak about certain topics, can speak but it isn’t what you mean, can speak but typing or using picture icons works better or uses fewer mental resources. Or anything else like that. Do whatever works best for you, and screw anyone who tells you different.

Anyone who feels the need to act as the supreme gatekeeper of all things assistive technology… not only do they have too much time on their hands, but they are letting ideology get in the way of real people leading better lives. And that is just plain wrong, and fundamentally unfair to people who could benefit from a communication aid.