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

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 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.

Edited with BlogPad Pro

Almost Alike: A Medical Cautionary Tale

Medical bracelet that says “Adrenal Insufficiency”.

I’ve been thinking about medical stuff a lot lately, so apologies if my posts tend towards the medical for a little while.  It’s what happens when you suddenly realize how lucky you are to be alive, and how close you came to death.  My father’s cancer has me thinking about life and death and medical care a lot, too.

In my dealings with doctors, I have found that they like the solutions to their problems to be neat and tidy.  In particular, they want there to be one diagnosis that explains all the symptoms they’re observing.  They want their patient to have that one diagnosis, and if their patient shows signs of more than one thing, it fouls up everything the doctor wants.

Case in point:  I had this neurologist at the headache clinic.  I told him that they strongly suspected my mother of having myasthenia gravis, or hereditary myasthenia.  Both are neuromuscular junction diseases that cause specific muscles to wear out quickly as you use them.  So for instance my eyes start out tracking the same object fairly well, but as time goes on, they drift outwards leaving me seeing double.  I had told my neurologist all about this, and about other muscular problems I’d been having.

I don’t remember why myasthenia came up, but I told him I was going to start on Mestinon, a medication that treats myasthenia.  His response was swift and a little annoyed:  “It’s not going to do anything.  I don’t think you have myasthenia.” 

“Why not?”

“Because people with myasthenia have trouble with specific muscle weakness. You have generalized weakness.  It’s not the same thing.”

He explained it as if I didn’t know this.  But he also explained it as if I hadn’t told him time and time again about the specific weakness, that was separate from the generalized weakness.  As if I hadn’t told him things were more complicated than he was expecting.

He offered to run an EMG but told me the results would be negative because “You just don’t have myasthenia gravis.”  I declined the testing.  I don’t like to be tested under circumstances where the doctor has already determined what the results are going to be.  Plus, I’d just been through an invasive procedure that left me in horrible pain for weeks, and I didn’t feel like being poked and prodded again.

But I did try the Mestinon, and it did make a difference.  It was subtle at first.  I could walk around my apartment without falling.  My eyes tracked things better, and for longer, before the double vision kicked in.  It was things like that.  The more Mestinon we added, the better those things got.  So it seemed my headache doctor was wrong, and there was something real about the effects of the Mestinon.

But in other areas, I was getting weaker.  In fact, as far as I could tell, I was dying.  I was hesitant to tell anyone this fact, because it felt like a fairly dramatic thing to announce.  But I’d known terminally ill people who had more energy than I had at times.  And I have instincts that tell me when something is going badly wrong.  Something was going badly wrong, and it went along with that more generalized muscle weakness.

I’ve already told the story of how I got diagnosed with severe secondary adrenal insufficiency.  And that’s what happened.  They found no measurable evidence of cortisol or ACTH in my blood.  When they flooded me with ACTH, I made cortisol, but not as much as expected.  Meaning my pituitary gland is not making enough ACTH to tell my adrenal glands to make cortisol.  And this was the reason for, among many, many other symptoms, my severe muscle weakness that affected my entire body.

I went into treatment for adrenal insufficiency and everything seemed to be looking up.  No longer bedridden.  No longer required to use a wheelchair for anything.  Not that I minded these things so much when they were happening, but it’s nice to be able to get up and walk up and down a flight of stairs when you want to.  It feels good to be able to exercise, after six years of bedrest.  Dexamethasone makes me feel alive again, instead of waiting for the next infection to kill me.   I feel strong, and sturdy, and robust, in a way I haven’t in years, and my friends sense the same thing about me.

The only problem?  Not everything went away.  I still had weakness in specific muscles.  I’d been referred to a new neurologist at the same time they were testing my cortisol.  This neurologist never pretended he had any answers.  He was simple and methodical in the way he worked.  He would come up with a list of every possibility, no matter how remote, and then he would run tests for every possibility.  This made me trust him in a way that I didn’t trust my migraine neurologist.  So I let him do any test he wanted to do.

Many of the tests, he came in and did them himself, which is unusual for a doctor.  Usually they delegate that stuff.  He did a regular EMG that turned up nothing, and I thought “See, my mother didn’t have an abnormal EMG either, so whatever we have isn’t going to show up on tests.”  Neither of us showed up as having the antibodies, either.  I began to think this was going to be one of those things that we never solved.

Then he called me in for something he called a single fiber EMG.  He was going to stick a wire into my forehead and measure something about the muscles.  I remember that on that day I had a lot of trouble even holding my head up on one side, and that I was seeing double.  He stuck the wires in, made me raise my eyebrows and move my eyes around.  There were a lot of electrical noises.

At the end of the test, he told me he wanted to see me as soon as possible because the result was abnormal.  The muscles were firing asynchronously. 

I didn’t know what that meant, but a week later I was in his office being told that I probably did have a neuromuscular junction disease after all.  Probably myasthenia gravis, possibly a much rarer hereditary form of myasthenia.

And to think that literally a couple weeks before I got the single-fiber EMG, my regular doctor and I had been discussing whether I really needed to be on Mestinon anymore.  We thought maybe my only real problem had been the adrenal insufficiency all along, and that my response to Mestinon might have been some kind of placebo effect (even though I don’t seem very prone to that effect even when I want to be).  Even I was starting to fall prey to that idea that a diagnosis is just one thing.

Right now, we don’t really know what exactly my diagnosis is.  We know for certain that I have secondary adrenal insufficiency.  And we are pretty certain that I have a neuromuscular junction disorder, and the most common one of those is myasthenia gravis.  (I’m just going to refer to it as myasthenia gravis for the rest of this.  Because it’s shorter than saying “the thing we think is myasthenia gravis maybe”.)

But the important thing — the thing a lot of doctors miss — is that there is not one diagnosis here.  There are at least two diagnoses, possibly more.  This is not the first time, and it won’t be the last time, that I’ve had doctors miss something fairly obvious because they thought that the simplest explanation is always a single diagnosis. 

I still remember back when I was dealing with three different diagnoses that affected movement in different ways:  Adrenal insufficiency, myasthenia gravis, and autistic catatonia.  And any time we’d try to bring up a symptom of one of them with a doctor, they’d bring up a “contradictory” symptom from a different one of them, and that would mean that… it couldn’t be myasthenia gravis, because sometimes I froze stiff instead of limp, because I also had autistic catatonia.   And it went on like that for years, where every condition I had was ‘contradicted’ by some other condition, so many of the doctors refused to see the complexity of the situation.

Sometimes that resulted in situations that were almost funny, but other times it could turn deadly.  There was a time I was hospitalized for aspiration pneumonia connected to gastroparesis, and my doctor refused to treat me for anything other than the pneumonia.  So I had collapsed in my bed after vomiting so much that all the muscles involved had gone limp and I was starting to have trouble breathing.  In retrospect we think it was the start of an adrenal or myasthenia crisis, and that I belonged in the ICU.  But at the time, the hospitalist simply refused to treat anything that wasn’t pneumonia.  So I had to lie there totally immobilized, delirious, and hallucinating, wondering whether I was going to survive, for days on end.  All because a doctor was only willing to think about one condition at a time.

Over the years, I’ve picked up an impressive collection of diagnoses.  Many of them are based on symptoms and my response to treatments.  But some of them are based on hard-core medical tests like high-resolution CT scans — things you can’t confuse for anything other than what they are.  I’m going to list the ones that  were diagnosed by those hard-core medical tests, and understand I’m listing them here for a reason:

• Bronchiectasis (high-resolution CT scan)
• Frequent bowel obstructions (x-ray)
• Central sleep apnea (sleep study)
• Obstructive sleep apnea (sleep study)
• Early-onset gallbladder disease (ultrasound)
• Exotropia (eye exam)
• Gastroparesis (gastric emptying scan)
• GERD – reflux (barium swallow)
• Esophageal motility problems (barium swallow)
• Dysphagia (barium swallow)
• High cholesterol (blood test)
• Hypermobility syndrome (Brighton criteria)
• Myasthenia gravis or related condition (single fiber EMG)
• Secondary adrenal insufficiency (cortisol test, ACTH test, ACTH stimulation test)
• Urinary retention with spastic urethra (urodynamic testing)

So this is fifteen different conditions right here, that there is no possible way that I don’t have them.  They’ve been tested for, the tests are valid, there’s nothing unusual about the tests I was given, they exist.  I’m diagnosed with a lot of other conditions, but even if we pretended that those conditions turned out to be misdiagnosed because some of the diagnosis was subjective… I’m still left with fifteen conditions here that are very much real.  Some of them are more serious than others.  But many of them are difficult and complex both on their own and in combination with each other.  (Also, many of them went years misdiagnosed because doctors refused to even test me for them, believing that a person with a developmental disability or a psych history couldn’t possibly be telling the truth about their own symptoms.)

Now imagine you’re a doctor, and I’ve walked in your door, off the street, with no medical history.  And I’ve got the symptoms of all of these fifteen conditions.  Some of the symptoms are severe enough to be life-threatening.  And your very first instinct is to try to find one condition that accounts for all of these symptoms.  You’re going to be looking for a very long time, and you’re going to be lucky if I don’t die before you figure it out.

Of course, it’s still possible that there really is one condition that explains all this.  Or at least, a small handful of conditions.  There are many genetic conditions that can cause problems all over your body, and they can be notoriously difficult to pin down.  But for the moment, we’ve had to diagnose all of these things separately in order to get a handle on how to treat them. 

It may be there’s some genetic condition that causes neuropathy (my mother and I both have symptoms of autonomic and sensory neuropathy), which could in turn cause the gastroparesis and esophageal motility problems (and dysphagia, and other things that aren’t listed above), just as one example.  But right now we don’t have that information.  Right now we just know I have gastroparesis, and that it doesn’t play well with reflux and bronchiectasis, and that if I hadn’t gotten a feeding tube in time it probably would’ve killed me.  There could also be something behind the adrenal insufficiency, but that damn near did kill me a number of times before we even knew enough about it to put me on dexamethasone. 

And that’s why it’s important that medical professionals not restrict themselves to a single diagnosis when they’re looking at what’s going wrong with someone.  If you see symptoms that look contradictory, then you ought to be wondering if you’re looking at more than one condition at once.

If there’s one thing I have noticed, having been in and out of hospitals for a long, long time… it’s that my roommates are usually people like me.  They’re people with multiple medical conditions all at once.  They’re not textbook illustrations of a single condition in all its pristine glory.  They’re a mess, just like me.  Like my roommate who had both Lesch-Nyhan and myasthenia gravis (and was a woman, which is rare for someone with Lesch-Nyhan in the first place).  They really treated her like crap, too — they wouldn’t believe a word she said about herself, unless they could verify it from some outside source, which they always did, but still never trusted her.  Sometimes I heard her crying after they left.  At any rate, I can’t remember a single hospital roommate who had only one condition, unless they were in there for a routine surgery.

Which tells me that those of us who end up in hospitals on a regular basis, at least, are people with complicated medical histories.  Not people who just have one simple thing that can be figured out.  Which means that no hospitalist should ever do what one of mine did and say “I’m only treating the pneumonia, nothing else matters, no matter how bad things get.”  I’m really passionate about this issue because I’ve seen how close to death I’ve come, how many times, just because everyone wanted my body to be simpler than it was.

Maybe the problem is that we train doctors too much on textbooks, and on the people who most resemble textbooks.  We don’t want to confuse them with too much, all at once.  So they grow to look for the one explanation that will explain it all, instead of the fifteen or more explanations that will explain it all.  And in the meantime, their patient could die while they’re waiting to get properly diagnosed.

And that’s the part that worries me.  I’m very lucky to be alive.  My doctors know I’m very lucky to be alive.  And I have a pretty amazing team of doctors.  I have a great GP, a great pulmonologist, a great neurologist, and a great endocrinologist.  These are doctors who are willing to listen to me when I know more than they do, but also willing to argue with me when they know more than I do, it’s the perfect combination. 

My GP has been here since I moved to Vermont, and he is known in the area as one of the best doctors around.  We have our disagreements, but he always explains his decisions to me, and I always explain my decisions to him.  We respect each other and that makes everything work.  He has done his best to stand up for me in situations where my social skills have caused problems with other doctors.

My pulmonologist is amazing.  She always anticipates situations where I’m going to face discrimination, and she’s always ready.  When she knew I was heading for a really bad pneumonia, she had my lungs CAT scanned to prove the pneumonia was there, because she knew nothing less than that would get me admitted to the hospital.  And even then it took all she and my GP could do to get me into the hospital and keep me there long enough to get me a feeding tube.

I’m new to my endocrinologist, but he’s clearly really good too.  He’s been helping me through the first stages of being diagnosed with adrenal insufficiency, including things as difficult as when to stress-dose and how much.  He’s given me the confidence to figure out on my own the amount of steroids I need to give myself in physically or emotionally stressful situations.  That’s a key skill you have to have to avoid adrenal crisis, and I think I’ve finally got the hang of it.

My neurologist is also new, but he’s clearly highly competent.  There’s nothing flashy about him or anything.  It’s not like he has some kind of flashy swagger like you see on TV shows.  He’s very quiet.  What he has is the ability to be mind-bogglingly thorough.  He listens to everything you have to say, he asks very careful questions, and he takes very careful notes.  Then he thinks up every possible condition that could result in the symptoms you have, no matter how rare or improbable it seems.  Then he figures out which ones are the most important to test for first.  And then he pretty much tests you for everything.  If there were two words for him, it would be methodical and thorough.  And it’s paid off — we now know I have something similar to myasthenia gravis, even though all the signs were pointing away from it for awhile.  Like my GP, he’s one of those doctors that other doctors hold in very high regard.  I can tell by the way they talk about him.

I wanted to make a point of talking about these doctors, because the point of this post is not to bash the medical profession.  These are people who have saved my life.  These are people I have built a relationship with over the years, or am in the course of building a relationship with now.  I’ve had plenty of truly awful doctors, but I’ve had a surprising number of truly great ones as well.  Most are somewhere in the middle.  But the great ones are the ones I owe my life to, many times over.  They have done things for me that, I am sure, they have never even told me about, and probably never will.

But all doctors, no matter how great, need a reminder that medical conditions don’t come in neat, orderly packages the way the textbooks make them sound.  Most disabled people and people with chronic illnesses have multiple conditions, not just one.  Often, these conditions have symptoms that can seem to contradict each other.  And even when there’s one overarching condition that causes all of them, there’s a good chance you’re going to need to find all the smaller conditions before you can put the puzzle together.  Many times, finding all the smaller conditions is a matter of life and death.  People simply can’t wait around to find the perfect most elegant answer when we’re going into adrenal crisis or myasthenia crisis on a regular basis.  Maybe there’s a reason I have adrenal insufficiency, and maybe one day they’ll find it, but for now I need to be on dexamethasone so I don’t die in the meantime.

This is how I feel when I read a lot of posts about the Judge Rotenberg Center.

Close the Judge Rotenberg Center.  For the love of everything holy, close the Judge Rotenberg Center.  Stomp it into the ground and dance on its fucking ashes.

But.

You won’t be done.

You’ll just have eliminated the most obvious of a huge number of places that torture and abuse their patients in the name of treatment.

Skin shock is showy and scary and it makes a good story and it makes it easy to see what is hurting people.

But people can be hurt just as bad or worse without it.

People can be hurt just as bad or worse by places that don’t brag about the torture they inflict on their patients.

People can be hurt just as bad or worse in the institutions everyone loves to love because they’re so beautiful, they have such wonderful grounds, they seem so loving.

You can’t understand, maybe, why this is true.

You think, maybe, that abuse, trauma, PTSD, CPTSD, can be measured in volts.

It can’t.

You think, maybe, that the destruction of lives is proportional to the visible destruction heaped on the body.

It isn’t.

It’s so much more complicated.

I have a friend who gets really upset every time some over-the-top institutional horror story makes the news.  So do I, for that matter.

One part of it is because, obviously, it’s horrible, and we’ve both lived through horrible things.  She’s been to both state and private institutions (and found private ones worse, by the way, so much for stereotypes).  I’ve been to private institutions and private residential treatment facilities and what I like to call ‘community institutionalization’… too hard o explain in such a short space.

I spent most of my teen years in the psych system (and to some degree was exposed before that) and sometimes in mixed psych/DD settings, and pretty much all of my adulthood in the DD system.  I have physical disabilities that could easily put me in a nursing home, and developmental disabilities that qualify me for admission to an ICF/MR.  Staying free takes up more of my energy than I’d like.

I’ve been abused and tortured and traumatized and almost-killed in all kinds of settings, inpatient and outpatient.

At one time in my life, with severe self-injury, I’d have made an ideal candidate for the Judge Rotenberg Center.  I am not somehow different from people who go there.  You’d be surprised at the people who go there and how not-different they are from many people you’d imagine would never go there.

(That’s true of all institutions.  The people who live inside them, and outside of them, are identical in every way.  The only difference is how the support takes place.  When it’s support at all and not just hell on earth.)

Anyway.

What I want to say is.

One reason that my friend and I get upset by these stories is because we’ve lived through some horror stories of our own.

Another reason that we get upset by these stories is this fear we have, that we don’t think is irrational at all.

We fear that when people focus on the outrageous, the flamboyantly awful, then they won’t see the way the outright ordinary, even the seemingly wonderful, can do the same degree of harm, or worse.

The worst harm in institutions is, by the testimony of many, many inmates, not just the physical torture that takes place in some places — sometimes above-board, sometimes secretly.   Often it’s things you can’t even name.  Those things are happening in the JRC too.  Those things hurt people there as much as the torture does.  Nobody is doing a huge campaign to shut down those things.

Many people, if the JRC is closed, will simply be sent to other institutions.

They will then be told that they are lucky and that those other institutions are better.

They may come to believe those other institutions are better.

Those other institutions may actually be better.  But they may not be.  It may just be that the badness has seeped down deep into some underground place where you can’t count it, can’t name it, can’t even describe it, and therefore it…. isn’t there.

And they will continue to get hurt by that.  They may not realize they’re getting hurt by that.  They may attribute the hurt to themselves, to their mental illness, to anything but the environment that is causing or contributing to it.

And that hurt may be harder to recover from than the JRC.

How do I know this?  Because while I was not in the JRC, I was in mental institutions that physically tortured me (not with skin-shock), and was then moved to a ‘better’ place that tortured me in harder-to-explain ways, and hurt me in deeper places, and I learned to say and believe how ‘better’ they were while living how worse they were deep down.  I still live with how worse they were.

And I know many other people who have the same story to tell.

And I know that unlike me, many people who live at the JRC won’t be able to escape the institutional system the way I was able to.  My situation was unique to me.  I didn’t get out because I was better off disability-wise than others, I got out because I was in a particular, unique set of circumstances.  The difference between people on the inside and people on the outside is not their disability.

But once you’re in a long-term institution, it’s harder to get out.  I was lucky, I was usually in a string of short-term institutions (even if I spent longer time periods in them than other people there), then when I was in a longer-term one, my residential facility closed and it became useful to them to decide I was recovered enough to leave, and to “transition” me to a “less restrictive environment”.  Which was still a hellish environment, mind you, but more chance of freedom, there, too.  And I had people around me savvy enough to advise me how to take the chances I had.

And most of the people in the JRC won’t be leaving to freedom, if it gets closed.  They’ll go to other institutions.  And however grateful they are to be out of the JRC, they will get hurt in those new places.  Because that’s what institutions do.  Invariably.  You don’t have to know you’re hurt to get hurt there.  You don’t have to understand how deep the hurt goes, to get hurt there.  You just have to be there.  And you’re often the last person to know how deep it goes, right down to the level of your self and identity and everything important to you.  You can get turned inside out without anyone laying a finger on you.

Nobody will ever be able to pinpoint the institution that inflicts the worst of this sort of damage on its inmates, because this sort of damage is, by its very nature, secretive, even from the person it’s being inflicted upon.  And because nobody will be able to pinpoint the worst of it, there will never be a massive, targeted, decades-long campaign to close the worst of these institutions.  Anonymous will never catch on and take part.  The world will not be outraged by the damage inflicted, no matter how devastating.

And if the people damaged by these institutions show that they are grievously psychologically injured by these institutions, people won’t connect it to the institutions.  They’ll connect it to the nebulous concept of ‘mental illness’, and quite possibly try to construct more of the exact same kind of institutions to deal with it.  Nobody will notice that the ‘increased mental illness’ is correlated with the institutions themselves.  Nobody ever does notice.

Nobody catalogues this kind of damage.  Few people study it.  Few people understand it.  Few people can see when and where it is happening.  Few people can understand the damage in the first place.  Most people who describe the damage won’t be believed.

Worse than merely not being believed:

When we describe the damage inflicted upon us, we are invariably described as ungrateful for the advantages that we had in not being in “a place like the Judge Rotenberg Center”, or not being in “a state institution”, or not being in a place that the world universally recognizes as horrible.  Because some of the worst damage is inflicted on us in places that other people see as wonderful.

They will ignore the abundant testimonials by ex-patients who have experienced a wide variety of institutions.  There are tons and tons of people who have been to both state and private institutions and found the private ones immeasurably more damaging, because the extra funding means extra ability for staff to mess with the heads of the inmates.  There are tons and tons of people who have been to both state institutions and group homes and found the group homes immeasurably worse.  There are tons and tons of people who have been to both locked private traditional-institutions, and unlocked residential facilities and group homes, and found the residential facilities and group homes immeasurably worse.  There are tons and tons of people who have been physically tortured at one institution, moved to another institution where no apparent physical torture was present and found the second institution immeasurably worse.  There are people who have been moved from ‘bad’ institutions everyone loves to hate, to wonderful paradise-like ‘intentional communities’ where they had, in the eyes of others, everything they could possibly want, and described how much more horrible the intentional communities were, the ones formed with the best intentions of parents and staff.

People ignore this.

People ignore this completely.

No, worse.

People ignore this and they utterly disparage any current or former inmate who says these things.  They say we don’t understand what we’re talking about.  They say we have no vision.  They say we have no comprehension. They say we don’t understand how good we have it.

And it’s even worse for people who have only been to the ‘better’ (in the eyes of the public) institutions, and complain about how awful they are.  They’re told that they don’t understand how good they have it, only much worse.  And they are told they should be grateful for what they had, that they wouldn’t last a day in a ‘real institution’.

Hell, I’ve been told I haven’t been in a ‘real institution’ just because I was in locked, private, short-stay institutions a lot of the time.  (And one private long-stay institution that was on a ranch in the country so it didn’t count as an institution, somehow.)  Never mind that, at the time, I was referred to as institutionalized by everyone in the system, including people in these institutions… apparently it’s not an institution until it’s a big-campus state institution.

So people who’ve only been in much fancier, much ‘better’ institutions than I’ve ever set foot in, are told this only ten times worse than anything I’ve ever gotten for talking about my experiences.  Especially if they’ve been in the pseudo-utopian farm communities, or the ‘intentional communities’, or things like Camphill, which are all billed as not institutional somehow even though they totally are.  You can’t change an institution by changing the shape of the building and slapping on a new coat of paint.

Anyway.

People who have been through the worst kinds of hell that institutions can provide are not believed, because the worst kinds of hell that institutions can provide are not things that people outside of institutions can understand in any way.  People outside of institutions want the blood and gore and skin shocks to prove a place is horrible.  They don’t want to understand that there are things more horrible than any of that.  They don’t want to understand.  They just don’t want to understand.

And people in institutions often don’t want to understand either.  I didn’t want to understand what was happening to me.  I wanted to believe that now that I wasn’t being tied down and tortured on a daily basis, then I was free.  I wanted to believe that really badly.  You have a vested interest in believing you’re someplace better now, that things will get better.  Sometimes believing things are better is your only defense against how awful things are.

But once I really got out, and I had to deal with the intense emotional and psychological injury I’d been done by all of these places, the truth gradually began to dawn on me.  It’s easier to heal from physical wounds than it is from psychological and emotional wounds.  It’s easier to heal from the obvious horrors than the hidden horrors that lurk behind the scenes, turning you inside out and upside down, piece by piece, one bit at a time.  You can heal, but I can tell you that it’s not being tied down, not physical or sexual assault, not even the horrifying restraint practices I sometimes endured, not the physical pain, that continues to haunt me.  I mean, it does, to some degree.  Things like that always do.  But there are things that have damaged me deeper, in ways I can’t even articulate.

And my friends and I, when we see coverage like this, we’re so afraid.

We’re afraid of the ‘better’ institutions.

We’re afraid of the public’s idea of what a ‘really bad institution’ is.

We’re afraid of some of the disability community’s idea of what a ‘really bad institution’ is.

The JRC is a really bad institution.  It’s doing that horrible kind of damage at the same time that it’s doing the physical damage.  I can see that.  Because it’s got enough funding, it can really fuck with people’s heads.

But you could force the JRC to remove every piece of physical punishment it owns, even restraints.  And it would still be horrible.  It could even become worse.  Because when places can’t focus on hurting your body, they have more time to focus on hurting your mind.  And hurting your mind does the most lasting damage there is.

The JRC needs to be shut down, period.

But there are places just as bad that will never be shut down if we use the JRC as the model of what the worst kinds of institution look like.

And there are places even worse that will never be shut down either.

And the worst places in the world, generally, are the same ones that will get propped up by the shutting down of the places the public has the most visceral unpleasant reactions to.

There’s problems in the disability community, too, and until they’re exposed for what they are, there will be a lot of difficulty changing things.

There’s… a lot of disabled people out there who engage in the completely unproductive practice of competing to talk about who stayed in the worst institutions, who had the worst treatment.

Understand that when I’m talking about the worst institutions above, I’m not talking about the worst institutions in any kind of competitive sense.  I’m talking about, the worst in terms of the overall amount and kinds of damage done.

I’m not saying that there aren’t people who had worse experiences in state institutions than private ones, or that there aren’t people who had worse experiences in traditional institutions than in pseudo-utopian farm communities.  I’m not trying to negate any one person’s personal experience.  I’m just trying to explain… things are not what they seem, what everyone believes to be true is not necessarily the truth.

But I’ve seen disabled people who compete with each other about things like this.  They say that they, unlike so-and-so, had experience with real institutions.  Or they, unlike so-and-so, had real bad experiences.  Or they, unlike so-and-so, were really traumatized by what happened to them.  That because they stayed for months rather than days, or years rather than months, their experiences were automatically worse and more deserving of recognition.

And there’s… absolutely nothing productive that happens there.  That’s ego-driven bullshit.  It’s not activism, it’s not helping anyone at all.  It’s a competition in self-pity.

So understand, again… when I’m comparing things, I’m doing so not with the aim of undermining any given person’s experiences in their own life.  I’m doing so with the aim of showing people things they don’t want to see.  I’m saying that what most people say is best, in terms of institutions, is often the worst of all.  That often, the most damage is done where it can be seen the least.  People have to understand this if they’re going to have any hope of actually reducing damage.

So close the JRC, close it over and over and over again until it’s really damn closed.

But… don’t focus on it to the exclusion of places just as bad or worse that don’t necessarily look as bad on paper.

Understand that your visceral reaction to the idea of skin shocks doesn’t make it the worst possible punishment that can be devised.  It’s a pretty diabolical physical punishment.  But sometimes — no, more like often or usually — people are damaged worse by things that don’t touch them physically at all.

Your instincts here are not necessarily a good guide to what is truly awful.

And I worry so so much about what will happen to people after it closes.

And I worry so so much about people enduring unspeakable damage, sometimes far worse than skin shock would hurt the same people, in institutions considered progressive and even utopian.

(Trust me, behind just about every utopian institution lies a dystopia beyond imagining.  And I worry about the “He loved Big Brother” effect obscuring people’s views of what actually goes on in those places.)

My worst nightmare.  And when I say my worst nightmare, I mean, these are actually real actual dreams I have that are worse than any other nightmares I’ve ever had.  They vary in content, but they go something like this:

I’m living in a place with lots of other people with disabilities.  There are staff there.  The staff try to give us every freedom they possibly can, at least as visible from the outside.  In one of these nightmares, I’m climbing a tree, outdoors, and totally allowed to do so.  But there is someone following along behind me to make sure I don’t get hurt.  I feel like a child.

I feel like I’m suffocating.  I feel like I’m suffocating in cotton candy.  But I can’t point to anything particular that’s wrong.  There’s this fog that lurks over the entire place.  It’s white, maybe slightly yellow or pinkish white, but mostly white.  And it obscures the ability to see anything.  And it smells like sweetness.  And it feels like death, in the worst possible sense.   But you can’t tell where it’s coming from.  It’s everywhere and nowhere at once.  You can’t see it except in your head, and only out of the corner of your mind’s eye.

Staff are nice to us, in the same way that people are nice to young children.  They giggle at us as if we’re cute.  They hug us a lot.

They also make us do what they want us to do.  It’s not possible to know how they do it.  They don’t use physical torture or restraints.  They don’t even always use drugging or anything like that.  We just… somehow always end up moving in the direction that they want us to move in, so to speak.

When I wake up, I feel an intense longing for the place I just woke up from, just for a minute or two.  And then I realize what’s going on, and I want to vomit over and over and over again until the experience is gone from my head forever.

This isn’t the best description, because the problems of these places can’t be described.  I once spent six days in a place very much like that, though, and the sickly-sweet-death-fog clung to me for years before I could get it to dissipate.

Nobody will ever get the kind of backing to close a place like that, that they will to close a place like the JRC.  Even though a place like that could potentially do more damage than the JRC, after a person is moved from the JRC to a place like that.  And if we close the JRC, it’s quite possible idealistic people will be building places like that to take its place.

I can’t explain why it’s as bad as, ,or potentially even worse than the JRC or a place like it.

I can’t.

But it is.

Please trust me on that.

Please understand what I’m trying to say here, because it’s incredibly important, and not enough people are saying it.  (And no, it’s not “don’t close the JRC” or “the JRC is good”.  Somehow, people are really fond of reducing important, complex things I say to simplistic bullshit like that.)

I’m trying to say this, for the sake of all the people who won’t be helped if we focus only on closing the JRC.

Now I’m going to try to get some sleep again.  I hope I don’t have nightmares.

ETA:  Before anyone tells me, as they always tell me when I say this, that the Judge Rotenberg Center will call attention to the issue and everything will follow from there and the public will be interested in closing all the other institutions then, later, once we get to the JRC first, that’s not at all how I’ve ever seen it work, not with Willowbrook, not with anything.  (And a friend of mine worked in a “good institution” that killed a former Willowbrook client, mind you.  She got fired for trying to stop them from killing her.  So she survived Willowbrook only to get killed by staff in a ‘supported apartment’ group home setting.  So… that’s a very specific example for a very specific reason.)  The public doesn’t want to close all institutions when they hear of things like this.  They want to make good institutions and then forget about the matter.  And the good institutions can be worse than the old ones in many ways.

[This post was originally written on December 21, 2013.  I completely forgot I wrote it, but it is always a good time to resurrect a post of this sort.  Because people always need a reminder of certain realities about  institutions.  They’re all too happy to forget, that much never changes.]

Empty Mirrors and Redwoods

This was originally written and posted elsewhere on February 25, 2012.

This is in response to a quote:

“When someone with the authority of a teacher, say, describes the world and you are not in it, there is a moment of psychic disequilibrium, as if you looked into a mirror and saw nothing.” —Adrienne Rich

This is the story of my life. Not just teachers. Everyone. Everywhere. Not a moment. A lifetime.

Which is probably why one of my biggest goals in learning to communicate with people, in both standard and unusual ways, has always been to shout to the world that I exist, who I am, and that I am not going away without a fight.

It’s also why it hits me so hard when anyone tells me I’m impossible. They usually do it in the most fleeting ways. As in they don’t even give me a full once-over. In a moment they have decided I don’t exist. Sometimes it’s a matter of fact statement. “Real people don’t work like that.” Other times it is accompanied by some of the worst bullying I have ever encountered. “Real people don’t work like that. And I will stomp you into the ground for having the audacity to be who you are.” Any way it happens it hurts. Not just for me. I’m trying to make the way easier for others like me. I don’t want anyone ever to have to go through this again.

There is nowhere I can go that this won’t happen. Even if I try to go away from people, they can still follow. The closest I’ve ever come was when I first moved out on my own. I lived alone with my cat in a redwood forest. I would turn off the Internet, go outside, and talk to the rocks and the trees and the slugs and the fungus.

I’d fill my pockets with rocks. Or sit on the ground and stack rocks all over my body. And the rocks would tell me about my own solidity. They’d tell me about being part of mountains. And avalanches and mudslides. And volcanoes. And all the other things rocks know about. A small piece of granite in my hand would tell me about the smell of sun on a granite mountainside.

They told me I was part of the world too. Of the larger world. Many people say the world when they really mean the social world of human beings. The world is so much bigger than that. They told me that even if no human being told me this in my lifetime, that I do have a place in the world. A very small, particular place just for me. They said that everyone has a place like that. And that when I am done with my place in the human world, I will turn into all the animals and fungi and plants and microbes that will likely eat my remains. And then I will have other places in the world entirely. I may yet be a redwood tree when I grow up, just like some rocks turn into sand in the ocean.

Until now, I’ve never been able to fully express what all those rocks and stuff did for me. It was a surreal period of time. When I was online or with people, the main message I got was I didn’t exist. And even when the people weren’t around, their general behavior patterns followed me telling me I was a worthless, unreal waste of space. Then I’d go out to the rocks, in my driveway and elsewhere, and suddenly I had a place in the world and everything made sense. They didn’t tell me all these things in words. They told me through the patterns of what they were and where they’d been and what connections they had to other things. It’s hard to translate it into words or ideas, and harder still to translate into the dead, disconnected world that the mainstream culture wanted me to believe in.

So the rocks, the slugs, the dirt, the trees, and the fungus seemed to have no problem with being in the same world as me, and letting me know in so many ways that I belonged there. It was human beings that shut me out. The only thing I could write of it at the time: “I walk inside and I disappear; I walk outside and I have a place in the world again.”

But it wasn’t as simple as momentarily looking in a mirror and seeing nothing. My friend said it was more like looking at a painting without them in it and then being told it was a mirror. For me, it was not seeing myself no matter where I looked. I mean, on a deep level, I knew that I existed and that one day I would find at least one person like me. Knew it bone-deep, though I never imagined how much like me they’d be. But on the surface of my mind, it felt quite different.

On the surface, it was terror. Absolute unreasoning terror. That I might not really exist at all. That I might just be a thing. Forget not seeing myself in the mirror, I didn’t see myself anywhere. I felt like I was floating in a dark place without being able to perceive myself or anything around me. Or falling, living in free fall. Once it really started hitting home, I became terrified for my survival.

Because my life was not full of examples of anyone like me. Education was one way. I started junior high, high school, and college but I never truly finished them and deep down I knew I’d never finish. (Don’t make me explain the twists and turns in my educational history that made that statement possible.) I spent the majority of my teen years in either no school, institution schools, or special ed. And I knew that to the rest of the world none of us were real. And just — I can’t explain it fully — this caused an intense, deep terror of what my adulthood would be like.

After I fell off of the conveyor belt of life that all the real people were on, I was presented two, and exactly two, choices for my future. The first choice was that I could remain as I was, and go to an institution forever. The second choice was that I could get better and live on my own with no disability-related support. People called the second one words like “hope” and “we believe in you”. I called it a mirage. And it was really that second option that drove me to suicide over and over. Because that was the option I knew I would never become. And having it thrust in my face and called “hope” only gave me the message “hope is impossible”.

I knew this because I could see things about myself that none of those hopeful people could see. I saw that every month that life went on I was being expected to climb harder and run faster. And I saw that the things preventing me from doing those things… even if my skills were staying the same I’d be dropping further and further behind. But my skills were getting worse. And I knew exactly what that meant in terms of how feasible choice #2 would ever be.

Somewhere around when I got diagnosed, I coincidentally found Nobody Nowhere in a library. I brought it home because of nothing more than the picture on the cover. By the first page, I was in shock. By the next page, I cried. This was my first ever glimpse of myself mirrored in the eyes of another human being. I got profoundly lucky. I collect autiebiographies now, I think I have over a hundred, and that’s still one of the closest to my experience. If basic types of autism truly exist, she and I are in the same one. We are different in many other ways but not so much in that one. The first time I ever, ever was told by a human being in any form that I existed: I think I was 15 years old.

Somewhere in there I began making plans to escape. To run away to the woods and find some way to hide there and scratch out a living. But every time I tried going, I was caught long before I got there. People began making theories that something in my brain caused me to wander aimlessly with no real purpose in mind. They got me a bracelet that said so, that I couldn’t take off. Just one more mirror I didn’t exist within.

One reason I write about my experiences is to force the world to acknowledge who I really am and that I exist, that we exist as people like each other in these ways. But wrapped around that just as much is the desire to do for other people what Nobody Nowhere did for me. I know that a lot of people like me, given our language issues, don’t write a lot. And I want to be one of the ones that does, so that other people will benefit. And I don’t mean just about autism, although that will always be a large part of it. I mean everything in me that most of the world doesn’t acknowledge as a possibility let alone a large number of real life people. This happens to all marginalized people, and it also happens to people who just have things going on that are rare or contradict mainstream culture or the culture they live in. And I’m all of those things and I know how hard it is and I want to make it easier.

I also want to do something else. I’ve long had a video project in mind, but I don’t know if that will ever happen, so I do it in other ways too. I want people in the position I was in growing up, to know that choice #1 and choice #2 are not the only viable choices for a person to have. People kill themselves when they think they don’t have choices. And there are not enough choices in the world — but there are more than two.

Some truly nasty people once had a tittering little chat over my having said something like this once. It went something like “Why does she think her life is so great? She’s on welfare. She’s in public housing. She’s poor. She’s always going on about how wonderful this is, but that’s a shitty excuse for a life.”

I can’t even begin to explain the screwed-up worldviews that led to this little discussion. Including a complete misunderstanding of what does and doesn’t make disabled people happy with our lives (link to PDF). But really what it comes down to is this: Growing up, I learned that if I remained significantly disabled I would be in an institution. No other options. I knew long before anyone else did that cures were a pipe dream. I’d try hard to act like whatever they tried on me was making me better but that was bullshit and it fell apart fast. There was no such thing as a combination of freedom, and being unable to work or take care of myself. None. It wasn’t even imaginable. Nobody even made me aware of disability benefits or daily living services until I met other disabled adults.

To have no good options is a terrible thing. I want people to know there are options. They don’t work out for everyone. But to have the knowledge that there’s one option wakes your mind up and tells you there might be more. To actively look beyond the borders of your imagination. To be creative and keep trying. I know that the options I have now may disappear if the Republicans get their way, if the government collapses (even in a good way), if the economy gets ever more trashed. But my experiences since adulthood have stretched my imagination and taught me to keep trying for something until the day I die. Even if right now will seem downright luxurious compared to what is to come.

But what do I have now that is so special to me? I have a steady (if meager) income without having to destroy my body trying to work. I have subsidized housing, so I can (mostly) afford bills and food. I have housing at all. I have wheelchair accessible housing… mostly anyway. I have Medicaid and Medicare for health insurance. My GP is excellent and most of my other doctors are good. People actually pay attention to how to detect and treat pain, infection, and other medical stuff despite my communication problems.

I have a means of communicating in words that isn’t speech. I have learned how to communicate in words rather than just imitate what I thought was expected. I have a wonderful cat. I have friends who know me as myself, not a mirage, and who are not bullies in disguise. Including friends where we can understand each other without having to try too hard. Including some who can do so without words. I have learned some degree of self-respect and basic ethical awareness when dealing with people. I have a meaningful spiritual life. I have Internet access. And I’m alive.

So I have the basics — and more — and that is more than I ever expected. There’s things that would be better if they were different. But I can live this way fine. And I just wonder what kind of life a person has to have led to act like what I have is worthless.

The thing about never seeing yourself reflected by the people around you is that it’s simultaneously traumatic and invisible. So you feel terrible but you can’t put a finger on why. So unless you have someone telling you what’s going on, you’re eventually going to turn it around on yourself and become really miserable. And then your society generally sees your feelings as the problem, which just puts another layer of the same thing. It gets really convoluted. Because the answer — actually acknowledging you exist — is apparently too simple for some people.

This is why I freak out so badly sometimes when i realize I’m talking to someone who’s force-fitting me or what I’m saying into categories in their head that make no sense. It’s not the one instance. It’s the lifetime of little instances built up over the decades. It’s the fear — complete, unreasoning terror — of things ever going back to how they used to be.

I can’t imagine what it must feel like to grow up in a world where people see you. And talk to you. And about you. And not just about a series of illusions and mirages in their heads. I’m not talking about going out of their way to be inviting, even. Just noticing would be enough. Because when people notice, they act on what they’ve noticed, and it just unfolds naturally.

And if you ever wonder why I am so attached to redwood forests, it’s that. Both the one I was born in and the one I first lived on my own in. In both instances there was an intense sense of exactly where I belonged in the world. Everything around me told me that. And if I want to remember, all I have to do is think about that environment. Trees, soil, rocks, slugs, fungus, owls, moss, lichens, everything. I’m not able to live there but that doesn’t prevent me from being aware of these places. And whether it’s because I was born in such a place, or some other reason, that gives me the most intense feeling of belonging in the world that I’ve ever known.