There is ableism somewhere at the heart of your oppression, no matter what your oppression might be.

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If you are oppressed, then you face ableism. It’s that simple.

You’re probably not used to this concept at all, so I’ll explain(1).  Bear with me, because this is quite important whether you know it yet or not.

From my perspective, there’s two main ways that oppressions collide with each other. One is horizontal. One is what I’d call vertical or embedded. This post is about vertical or embedded oppression, which very few people discuss. Horizontal oppression, on the other hand, is very fashionable to dissect in detail at the moment, and I’ll leave that to the people who are much better at it than I am.

Horizontal oppression works more or less like this: Sexism and homophobia can go together because lesbians exist, who are both gay and female. Racism and transphobia go together because there are trans people of color. Etc. The connection is a side-to-side one.

Vertical oppression works more or less like this: Sexism and homophobia are connected vertically, because sexism is embedded within homophobia: You can’t have some of the core aspects of homophobia, without also having sexism. This applies not just to lesbians, but also to gay men. Because a large element of homophobia against gay men involves comparing them to women, and applying many of the same sexist attitudes towards gay men that would normally be attributed to women. That’s where you get the idea that there’s something wrong with gay men because gay men are sissies, effeminate, possess feminine attributes, etc. They’re first equated with women and then degraded in ways that have to do with women. You can’t have homophobia minus the sexism and have it take anything like a recognizable shape. It depends on sexism. That’s the big difference between horizontal and vertical oppression. Another big difference is that horizontal oppression is symmetrical (sexism + ableism = ableism + sexism) but vertical oppression is not (sexism is embedded in homophobia but homophobia is not embedded in sexism).

Every kind of oppression is connected to every other kind of oppression horizontally. But not every kind of oppression is connected to every other kind of oppression vertically. Some kinds of oppression are not embedded in any other kind of oppression at all. Other kinds of oppression are embedded in just one or two kinds of oppression. Other kinds of oppression are embedded in many forms of oppression.

Ableism is, to my knowledge, the only kind of oppression that is embedded in every other kind of oppression I have heard of. I have my theories as to why, but they’re not relevant here. When I say things like this, people think that I’m trying to make a case that ableism is the worst kind of oppression, or that I’m trying to get in some kind of pissing contest or another with regards to whose oppression is more uniquely terrible than anyone else’s. I’m not. This has nothing to do with that kind of comparison. It’s just that some kind of oppression had to be the one embedded in more kinds of oppression than any other, and ableism happened to fit the bill.

I’m not the only person to notice this. I think I’m the first person to coin the idea of horizontal versus vertical oppression, although I’m sure there are other people who have put similar ideas in different words. But disabled people have been talking about the pervasiveness of ableism in other forms of oppression for a really long time. We have tried to convince other oppressed people that our fight is, by necessity, their fight. Generally people don’t understand what we’re saying and find ways to ignore it, forget it, or even belittle it.

But people really should pay attention when we say this. Because when you have another form of oppression embedded within your own, you can’t possibly address your own oppression without addressing the other. Not because of a horizontal connection that only exists in certain circumstances. But because of a vertical connection that you can’t possibly get away from: Your oppression would not be the same kind of oppression without that other oppression stuck very close to the center. If you’re gay and you truly want to end homophobia forever, you can’t get away from having to deal with sexism. You can’t. You can pretend that you can, but you can’t actually do it.

So now I’m going to describe some specific examples of ableism in the forms it takes when it’s embedded in other forms of oppression. These are just examples. Later on, I’ll give you some guidelines for how to spot ableism quickly and easily, and where to look for ideas about fighting it. So here are some ways that ableism embeds itself in other forms of oppression:

  • When gay people are considered to have a psychiatric disease.
  • When men’s rights activists claim that the women’s Olympics are just the Special Olympics under another name.
  • When people of color are painted as inferior and deserving of unequal treatment because their IQs are supposedly lower than white people.
  • When women’s bodies are seen as a deviant and irregular version of men’s bodies, all medical testing is done on men first and women only as an afterthought, ordinary experiences of women are considered medical while ordinary experiences of men are not, etc.
  • When eugenics is applied to poor people and people of color in addition to disabled people. (Eugenics is fundamentally an ableist idea, all applications of eugenics are applications of ableism.)
  • When black men involved in riots are deliberately diagnosed with schizophrenia and brain studies are done on them in order to pathologize them and by extension their political stances.
  • When political dissidents of all kinds (including those involved in anti-oppression work for their own groups, whatever they may be) are locked up in mental hospitals.

These may seem like scattered examples of specific kinds of treatment, but they’re not. They all have certain core traits in common, and they all combine central characteristics of their own oppression with central characteristics of ableism. Such that it literally does not matter what kind of oppression you face, you’re guaranteed to face ableism as a component part of it. You can’t get away from ableism.

You can try, of course, and many people do try. The most common way other oppressed people deal with ableism is by not really dealing with it at all. Instead of addressing the ableism that forms the core of the problem they’re facing, they distance themselves as far as they can from disabled people.

What do I mean? Take the IQ situation. Nondisabled people of color who are classified as having lower IQs than white people, rarely look into how IQ has been used to oppress disabled people ever since it has existed, pretty much. They don’t look into what cognitive ableism is. They don’t look into the self-advocacy movement by people with intellectual and other developmental disabilities and the many ways they have criticized IQ testing and the way it is used against disabled people. Instead, they try to prove that people of color don’t really have lower IQs than white people.

Mind you, that’s an important thing to prove, if it’s true. But you can’t stop at proving that. Plus, if you really do end up having lower IQs, then you’re basically screwed. Stopping at “They’re wrong about our IQ score, we’re just as smart as anyone else” leaves you vulnerable in addition to inadvertently contributing to the oppression of disabled people. Looking into how the idea of being smart got equated with having a certain IQ score? Looking into how IQ has been used against people who score low on IQ tests (for all kinds of reasons) throughout history? Looking into the general shape of cognitive ableism in general and IQ-based cognitive ableism in particular? Understanding the basics of what ableism is and how it functions – by taking a certain kind of person and saying that we’re biologically inferior and this justifies seeing us as having less value, making fewer contributions to society, and being oppressed and discriminated against?

You have to do all of that. Proving that scientific racism is actually pseudoscience is important. But understanding the ableism that underlies scientific racism is just as important if not more so. Because if you take what happens when you have one of those things and not the other? Proving it’s pseudoscience leaves you forever vulnerable to the claim it’s actually real science. Dealing with ableism means that whether or not your IQ score is technically lower than someone else’s (and if you really look into ableism, you’ll see how meaningless that question can get, because it assumes that people actually have some kind of innate trait called IQ), the core oppression will not be there. And as a bonus you’ll have contributed to lessening oppression against actual disabled people as well, rather than inadvertently contributing to ableism itself.

This will all make a lot more sense when you understand what some of those core characteristics of ableism are. And understanding what some of those core characteristics of ableism are, will make it much easier to spot ableism within your own oppression. I pretty much guarantee that as soon as you understand the basics, you will start seeing it in places you’d never expected. So here are a few very simple aspects of ableism that you can spot within other kinds of oppression:

  • Any time one group of people is considered biologically or psychologically inferior to another group of people, and unequal treatment or oppression is justified on that basis, you’re dealing with ableism.
  • Any time you deal with eugenics, you’re dealing with ableism. Whether you’re dealing with “pure” eugenics aimed at disabled people in particular, or the more common situation where it’s intermingled with race, class, ethnicity, criminality, and other real and purported traits. You’re probably used to hearing of eugenics in terms of racism, classism, or anti-Semitism, but eugenics originated in ideas about disabled people and those ideas were then applied to all these other groups.
  • Any time you deal with medicalization (including psychiatric medicalization), you’re dealing with ableism.
  • Any time people are compared on the basis of what they can and cannot do, and that comparison is used as the basis for viewing or treating them differently, ,particularly in a bad way, you’re dealing with ableism.
  • Any time you’re dealing with “scientific” proof that a group of people is inferior to another, there’s a really good chance you’re dealing with ableism. If the “science” is couched explicitly in terms of medicine, biology, or psychology, it’s almost definitely ableism. So basically, if you hear that your oppression is justified on “scientific” grounds, perk your ears up for ableism, you’ll probably find it.
  • Pretty much any time you’re dealing with a situation where one sort of person is given access to part or all of a society, and another sort of person is barred from that access, and it’s justified on the grounds of ability in some manner, it’s ableism.
  • Any time your oppression is framed in terms of people like you being sick or having a medical problem for some kind, there’s ableism involved.

Keep in mind that for all of this, it doesn’t entirely matter whether the purported sickness or diminished ability level is real or not. The ableism is going to be there whether a person is actually possible to classify as disabled, or not. This is one reason that disfigurement is considered a disability in a lot of contexts. It’s also why laws like the Americans with Disabilities Act often contain a piece that says that it’s not just disabled people, but people who are mistaken for disabled people, who are protected. What matters to make something ableism is not whether or not the person qualifies as “biologically inferior,” whatever that means – it’s how people are treated based on that purported inferiority.

Once you start to see the basic patterns involved in ableism, you can see why it’s behind core aspects of every other kind of oppression:  Every form of oppression uses ableist ideas, actions, and concepts to further some of its most fundamental goals.  You’re going to always have your oppressed group being ranked in a hierarchy based on ability and found wanting.  You’re going to always have your oppressed group face some degree of medicalization.  You’re going to always have your oppressed group treated in ways that disabled people are treated, and the same sorts of reasons used to justify such treatment.  And unless you address these things, you can’t address the way your oppression plays out.  They happen in areas too central to how the oppression works — you can’t pretend the ableism doesn’t exist and get rid of the whole oppression at the same time.  Your form of oppression would be unrecognizable without ableism as a core feature.

You can learn a lot more about ableism by looking into what disabled people have already figured out about it. If all you can find is lists of “ableist words” with people telling you that stupid is a slur or something, you’re not usually going to find much depth there — whether or not you think stupid is a slur, that’s just not that fundamental to what ableism actually means. And frequently that sort of shallow take on things is what you’ll find if you just look up ableism. But if you look into the hard-core stuff within the zillion different branches of the disability rights movement, you’ll find a lot.

One of the best general introductions to modern disability-rights thinking about ableism in general, that I’ve found, is the book Pride Against Prejudice by Jenny Morris. There are tons of other entry points, that’s just one of the clearest, from my perspective.

You don’t have to agree with everything a disabled person says about ableism. Disabled people don’t all agree with each other.

Some disabled people seem to concentrate entirely on language and insist that it’s the most important thing because it changes people’s thoughts and changing people’s thoughts changes their actions and so forth. I think that’s a dangerous misconception, and I don’t honestly care so much what people think as much as how they treat me – if they think I’m inferior and treat me with respect anyway, then their thoughts are their business. I’d rather deal with someone who treats me with utter respect and calls me the worst ableist slurs I’ve ever encountered (IMHO, “retard” and “vegetable” and “empty shell” are all up there), than deal with someone who knows all the right words but treats me like shit. Other people have other ideas entirely about these things.

You get the idea: We don’t all agree . You don’t have to agree with all of us. You can’t possibly agree with all of us anyway. A lot of times people embroiled in identity politics get really wrapped up in the idea that the oppressed person is always right about their oppression. That’s bullshit. We can be as wrong as anyone. However, we have on average thought more deeply and for longer about our oppression than other people have, so you can benefit from our experience when dealing with the way your own oppression takes the same shape as ours.

And what specific situation you’re talking about will determine a lot about which disabled people you want to go to first. Want to deal with critiques of IQ testing? Go to people with intellectual and other developmental disabilities first. Don’t be fooled by stereotypes, we have a long-standing self-advocacy community who have been developing ideas about this stuff for decades.

And there are also always general ideas about disability that can be applied across the board, but in slightly different ways. The idea of accessibility was once focused entirely on wheelchair access. These days, there’s also a concept of cognitive access. Where interpreters in disability context used to concentrate entirely on translating between signed languages and spoken languages, there are now interpreters who assist people whose speech is hard to understand, and there are cognitive interpreters or English-to-English interpreters who interpret between the words and gestures of someone with a cognitive disability and the words and gestures of someone without a cognitive disability. The social model, like most aspects of mainstream disability theory, was once only for physically disabled people, and is now being applied to cognitively disabled people as well. Neurodiversity was once used in a context that was almost exclusively about autistic people, and now it’s about anyone with a neurocognitive disability.

Understand – I’m not endorsing any of these concepts. I hate some of these concepts. I think some of them are misguided or dangerous or simplistic or all kinds of other things. But I don’t want to decide that for you. I’m just giving you resources as a jumping-off point and you can make up your own mind. Hell, I’m not even that heavily into the idea of analyzing oppression in the way I’ve done in this post. I just think it’s important and useful for someone to be doing it somewhere so that people can see the underlying issue here – which is that you can’t address your own oppression adequately without addressing ableism, no matter what your oppression is, whether you’re also disabled or not.

So with all that in mind, I want to give you some keywords for common disability communities or disability-based ideas. Again, none of this is an endorsement of any of these communities or ideas or the views contained within them. They’re just places to start looking. I get frustrated when people say “Google things, it’s easy” and then won’t even tell you what to Google. Most people don’t even know enough about ableism to know that ableism is fundamentally about unequal treatment on the basis of real or purported biological and psychological characteristics. Most people who have heard of ableism have only heard of it in the contexts of word lists. There’s no way someone in that position is going to even know where to begin on Google, and it’s unfair to have that expectation of people. I’m perhaps more sensitive to that kind of thing specifically because of understanding cognitive ableism – and that’s precisely the sort of situation where an understanding of ableism can be useful throughout any oppressed group. I guarantee as you really learn what ableism is – really learn the depths of it – you will find concepts you can use in fighting your own oppression.

One more note about the keywords: All of these communities and ideologies and intellectual traditions, come from vastly different places. All of them accept some forms of ableism and reject others, that’s pretty much inevitable. Some of them are groups of people formed together mostly by life experiences, others are groups of people formed together mostly by shared diagnostic categories, others are a mixture of both. Some, like the concepts of developmental disabilities and psychiatric disabilities, are more accidents of history than categories that have an automatic, genuine meaning. Some, like psychiatric consumers versus psychiatric survivors, fall within the same broad category of people but differ based on how they interpret their own experiences, which aspects of the medical system they accept and which aspects they reject. But all of these are groups of people, and ideas formed by groups of people, who have formed significant ideas about the rights of disabled people within an ableist society. While the faction wars can be absolutely infuriating at times, the diversity among disabled people in terms of both life experiences and Ideas about those experiences, can be a great strength. You can find really important ideas within every single one of these groupings without ever having to believe everything they say wholesale.

So here’s a list of keywords you might find useful:

  • Disability rights, disability rights movement
  • Disability culture
  • Crip culture, crip, gimp
  • Self-advocacy, developmental disability self-advocacy, intellectual disability self-advocacy, learning disability self-advocacy, self-advocates, I/DD self-advocacy
  • Cognitive disability, physical disability, psychiatric disability, intellectual disability, developmental disability, sensory disability
  • Autistic self-advocacy, autistic liberation, autistic rights, autistic community, autistic culture
  • Deaf community, d/Deaf community, Deaf culture
  • Psychiatric survivors, psychiatric consumers, psychiatric ex-patients, consumer/survivor/ex-patient, c/s/x, mad pride
  • Neurodiversity, neurodiverse, neurodivergent
  • Patient advocacy, patient’s rights
  • Disability theory, disability studies, social model of disability, radical model of disability
  • Cross-disability
  • Disability access, accessibility, universal design, visitability
  • [Insert disability, disability-type, or disability-tool name here] access, [Insert disability, disability-type, or disability-tool name here] accessibility – for instance, wheelchair access, wheelchair accessibility, blind access, blind accessibility, screenreader access, screenreader accessibility, cognitive access, cognitive accessibility, etc.
  • Cognitive interpreting, English-to-English interpreting, sign language interpreting, [insert specific sign language here] interpreting, speech-to-speech relay
  • Ableism, disablism, ablism, disableism, disphobia, handicapism
  • Cognitive ableism, psychiatric ableism, physical ableism

I know I’ve left plenty of people out, and this is obviously centered on English-speaking cultures. But that’s more than enough to start with. If you’re looking for specific ideas tailored to specific experiences, then learn what these terms mean so that you can look up those experiences when you need to. Different movements, and different parts of the same movement, will give you very different ideas about the same problems, and that can be incredibly useful.

So I hope by now I’ve convinced you that not only is ableism about more than whether or not it’s a slur to say the word ‘stupid’, but it’s a vital part of understanding any other form of oppression you might face. I also hope I’ve given you enough places to start, that you can make a good start on finding any resources that might be useful to you in beginning to understand ableism and the experiences of disabled people in the world. And again, I guarantee that if you begin to truly understand what ableism is, you will find the concept useful in contexts you never dreamed of.

If you’ve made it this far, thank you for listening.  I really appreciate it.  Getting this idea out there means a whole lot to me, even the parts of it I’m not so sure I agree with.  It’s stuff that someone needed to say, so I said it.


(1) I’m putting what would normally be an introduction, down as a footnote, just so it won’t distract from anything in the actual post. The post is far more important than the introduction. So here’s what I was going to write as an introduction: 

 

This was an extremely difficult article for me to write. I understand the underlying idea easily enough. But to put it into words has taken me a long time, and a lot of effort. This is more abstract and intellectual than my posts tend to run.

But I felt like while a lot of disabled people alluded to this idea, nobody was expanding it enough for nondisabled people with no connection to the disability community to understand it. When I tried to tell people in short form, they assumed I was saying something totally different than what I was saying. So I developed these ideas until I could articulate them, and then over the past six months or so I have worked very hard at writing them down.

I still barely finished in time for Blogging Against Disablism Day, I wasn’t actually sure I could finish in time for Blogging Against Disablism Day. I’m still shocked that it’s happened at all. This was the original post I intended to write for BADD 2016, one that dealt with ableism as a whole rather than one particular disability experience. 

I’m very relieved to have finished It, not least because I am always pigeonholed as an autism blogger, I don’t see myself as an autism blogger, and it’s frustrating to sometimes only be able to write posts that reference autism a lot. Autism is not my only disability. It’s not my central disability – I don’t exactly view myself as having one of those. It’s just a word that psychiatry coined for a bunch of people, tat’s become useful enough that I’ve felt compelled to use it in certain circumstances. But I find that even in disability contexts, hell even in contexts with other autistic people, the idea of autism begins to overshadow your personhood in a way that few other disability labels match in my experience. Nobody considers me a ‘myasthenia gravis blogger’ and writes about my entire life and all of my ideas as if they can be encapsulated by the idea of myasthenia gravis, but that’s exactly what people do with autism. I can write about things that have nothing whatsoever to do with autism and still get most of my responses back about autism. It’s kind of ridiculous but nobody questions it, not even most autistic people.

So this year I really wanted my post to be about something that could not be tied back to autism like that. I mean I’m sure somebody somewhere will try, but there’s nothing about this post that is even remotely autism-specific, unlike my other two contributions this year. There are lots of other posts I wish I could have made this year, but I’m going to rest happy knowing that I made this one post, at least. 

And I hope that it can serve as a resource for people who are just beginning to learn about how ableism affects oppressed people who are not themselves disabled. Because it does, and it does so in specific, predictable ways that are pretty consistent across every form of oppression. And that’s important. And someone had to say all of this.

A lot of my posts in general seem to fall under the category of “I couldn’t find anyone saying the thing I wanted to find someone saying so I said it instead.” And this definitely falls into that category. There’s a lot of ideas contained within the post that I don’t even necessarily agree with, but that are necessary to the way the post is written. So this is very much not a personal post, and very much a post about a general idea that I think is important to communicate, even the parts of it that I don’t wholly agree with. What other people take out of it is their business, but I hope each person can find something useful there.

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

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

Reading The What In The What?

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

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

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

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

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

So what is the test?

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

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

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

 

 

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

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

These are still photographs.

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

The photographs are in black and white.

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

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

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

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

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

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

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

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

The photographs are created from actors.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So there may be:

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

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

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

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

Potential Effects of These Assumptions on Future Research

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

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

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

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

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

This is just one example of bad research design.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Comments and stuff

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Just a reminder, since I don’t post often (inertia problems mostly):

Comments are under moderation, so your comments won’t appear immediately, and it may take months or even years for all I know for me to get to your comment.  If your comment doesn’t appear instantly, that does not mean I have rejected it, it just means I have not approved it yet.  Comment approval is not the highest priority in my life at the moment so I can’t guarantee anything about when I’ll get around to stuff.  I just got around to stuff from a year ago, if that gives you any idea.

As far as comment policy goes, I’ve tried to write one and I don’t really officially have one.  I use common sense, that’s all I can really say.  

Comments that seem more like they’re intended as personal emails, don’t get posted, but I do read them, usually.  I don’t usually respond to them though — or to any other personal emails for that matter.  At the moment, it’s rare that I manage to reply to even personal emails from my closest friends: that inertia problem again.  So don’t be alarmed or offended if I never reply to your comment, either here or by email.

Comments that reveal a large degree of personal information (real or otherwise) about people — whether other people, me, or even the commenter sometimes (if it looks again like they’re mistaking it for a personal email rather than a comment form) won’t get posted, generally.  

Comments that engage in gossip or defamation won’t generally get posted.  If I have ever let those through in the past, I apologize.  Defamatory comments will be forwarded to my lawyer with IP addresses, deleted, and promptly forgotten.

Comments that exist specifically and deliberately to stress me out (don’t worry, you know who you are, and if it’s not you, you won’t have to worry, there is no mistaking these) won’t get posted, and will get considered by people close to me as a form of assault if they manage to actually do me harm, since my adrenal insufficiency and the results of deliberately causing me severe enough stress are public knowledge at this point.  Such comments (and comments that are illegal, harassing, defamatory, etc. — generally a category that overlaps, here) will generally get forwarded on to my lawyer as well as deleted, and then I forget about them very quickly.

Aside from those sorts of things, I let comments through on a case-by-case basis.  For the most part I let comments through, whether I agree with them or not.  If I don’t let comments through, it’s generally because they either seem like they’re intended as private emails (or any of the other above issues), or else because there’s something about them that seems more hurtfUl or otherwise harmful than it is useful.  That’s always a judgement call.  Sometimes I’ll doubtless make mistakes.  Sometimes I know I’ve accidentally hit the wrong button while moderating comments.  

But I think it’s far more fair to just say I make judgement calls, than it is to write out a ridiculously complex comment policy that has specific hard-and-fast rules that I could never actually abide by.  If I wrote a long, detailed comments policy, what would actually happen would be the following, most likely:  People who wrote absolutely innocent comments that violated the comment policy wouldn’t get their comments posted.  People who were up to no good would find ways of violating the spirit of the law while obeying the letter, and get their comments through, and if I didn’t let their comments through they would gripe endlessly about how I wasn’t  abiding by my own comment policy.  Especially if I let through innocent comments that technically violated it.  Lots of people would be paralyzed into not posting by fear of screwing up with one or more of the rules (I know people this happens to a lot, and it happens to me a lot in blogs with complex detailed comment policies).  So it’s just better if I say, if you’re not an asshole and don’t write something that looks like a private email or certain kinds of request on me, it’s likely that eventually your comment will get posted, and if it doesn’t it’s likely either a mistake on my part or your comment ending up in my spam filters.  Which happens a lot, the spam filter thing, I forgot to mention — when I have time to go through my spam filters, which is almost never, but when I used to have time, I would always, always, always find lots of legitimate comments sitting around in there collecting dust.

So I will eventually get to your comment.  If your comment is legit, and not malicious, most likely it will get posted, just not necessarily fast, because I do have disabilities that interfere with moderating stuff.  Comments that seem like private emails, or that are specific kinds of requests of me (mostly to do with permission to do such-and-such or interview requests and the like) won’t get posted usually.  Comments that look indistinguishable from spam bots will possibly not get posted either.  Gossip and malicious comments will not get posted if I notice them.  And other than that, I use my judgement.  I know some people get really upset when their comments are not instantly posted, and think I’m censoring them, but that’s highly unlikely if your comment was legit and not any of the other categories I’ve described.  The most likely reason for a comment not going through, by far, is that I haven’t gotten to it yet (and sometimes I don’t moderate all my comments in chronological order, so that’s no say of it either)

Maybe I ought to eventually make this a page, not just a post.  But since I’m planning on making at least one post for Blogging Against Disablsim Day, which draws more traffic than usual, I thought I should make this post.  Maybe I’l clean it up and make it a page, though, eventually.  I’m still finding my way around this new blogging software as well — it was hard enough to figure out how to post things.  

(It’s amazing how just lacking a certain amount of mental energy, makes me way more computer illiterate than I used to be.  Either that or I’ve finally hit the age where new computer stuff becomes WTFWTFWTF!?!!  You should see the kind of cell phone I have, everyone else sees it as a dinosaur but I can barely keep with the existence of cellphones, let alone smartphones, so I got something I can text on that does very little else, and I’m sticking with that as long as I can get away with it.)

When Orange Speaks Louder Than Words

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When Orange Speaks Louder Than Words

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

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

Anyway, I hated orange.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To All The Children In Severe Pain Tonight (BADD 2015)

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[This is my post for Blogging Against Disablism Day.  I will also have a post on my poetry blog, once I get around to rounding up all the poems I’m going to put in that post.]

I reach out for my body. It’s an instinct, all young ones must have it. But instead of feeling hands and feet, I feel a blast of burning pain, like stepping into an oven. I retreat back to the murky ocean I float in all the time. The pain is off somewhere distant, but so is my body. “Thoughtful” is a word I hear used a lot, when I stare off into space disconnected from my body.

Later, psychiatrists will call it severe dissociation. They will diagnose me with dissociative disorder, not otherwise specified (DD-NOS). They will talk about a ‘biological predisposition to dissociate’. Even when the extent of pain I am in comes to light, they have trouble seeing the dissociation as a symptom of severe pain, rather than a thing in its own right.

Dissociation got me through 20 years of severe pain. 20 years in which by all rights I should’ve been curled up in a ball doing nothing, yet I was active, I was doing things, I was going to school, I was climbing trees. I didn’t know this was severe pain, I thought it was just another feature of the world. Trees have bark and my skin burns, the sun shines and my skin burns, the sky is blue and my skin burns.

Now they say my mother has small fiber sensory neuropathy, that maybe I was born this way, inherited from her, however our nerves got like this. It responds to Neurontin, and Lyrica, and Trileptal. It acts neuropathic, it acts like central pain, nobody knows which is which for me.

This is a shout-out to all the kids — all the kids living with so much severe pain you wouldn’t believe it yourselves, because it is your normal. And you go on trying to do normal stuff. And sometimes you can’t. Sometimes the pain just grips hold and you have no means to deal with it. But you don’t know you’re in pain, so you push against it, and you think you’re weak, everyone else can do this, why not you?

Why not you? Because you’re in severe pain and you don’t even know it. You may not even recognize it as pain, because pain is such a broad and nebulous category.

My heart goes out to every single one of you. All of us who are going through this now, as children. All of us who survived and made it to adulthood and now know how much pain we were in, and wonder how we got through it. All of us whose pain is being treated as DD-NOS or another psychiatric disorder, because all people can see is our emotional responses to pain, not the pain itself. All of us who are told ridiculous things like “You have pain that gets less on Neurontin? The pain must be part of a seizure.” All of us who are told that if we were really in pain we wouldn’t be able to do what we do now… they throw our expert coping mechanisms back in our faces, and want us to see pain psychologists who will teach us everything we already know about how to manage pain.

Everyone in this situation — I am thinking of you tonight. Together we form a whole constellation of pain, burning bright. And however well or badly we are dealing with the pain right now, we are people who are surviving.

Goodbye, Ron.

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My favorite picture of my dad, farm boy to the core and grinning from ear to ear.  Once he found out I liked the overalls, he wore them every time he visited me.

But last time we visited… call it a premonition, call it whatever you like, it was the first time we cried when saying goodbye.  We both knew we’d never see each other in person again.  Neither of us could say it.   But we knew.

About a year and a half later, they diagnosed him with cancer that had metastasized pretty much everywhere, to the point they couldn’t find the origin. I’d thought that you could do tests for that, but apparently not always.  They gave him 3 months to live in May.  He died November 12th, at 10:06 pm.  He was at home, holding my mother’s hand, not in any pain, and she gave him permission to let go.  And he just vanished.

He would have been 73 later that year, outliving almost all of his male relatives, who tended to die of unexpected heart problems between the ages of 45 and 65.

I dealt with my feelings around his imminent death by writing a whole lot of poetry, much of which is on my poetry blog.  My mother wrote a poem too, after he died.  Here is my mother’s poem, used with permission, copyright (c) 2014 Anna Baggs:

50 years 5 months 10 days How can I say they were not enough
when they were filled with so many adventures
so many plans realized
so many obstacles overcome
so many joys bubbling up in our days together
so many surprises unwrapped
so many special days celebrated
so many ideas nurtured to fruition
so much support for individual dreams
so many near misses averted
so many rough patches gotten through
so many problems overcome
so many hugs and kisses planted
so much love grown a heart nearly bursts to hold it all
so many laughs shared they echo inside me like a brook’s water over rounded stones
so much music and well worn books shared
so many pets loved and incorporated into our family
so much personal and professional growth fostered
In sickness and in health we supported one another
Until death do us part. And here is the surprise I find…
Death does not separate that which has grown together
and Love is forever and reaches through time in both directions
Bending back in our memories and forward in our hearts and actions.
No parting of spirits here….You will be in my heart forever….
Rest In Peace my best friend forever, Rest In Peace.

My parents in front of their home in the California Siskiyou mountains, with their dog Daisy.

My parents in front of their home in the California Siskiyou mountains, with their dog Daisy.

My father didn’t want a funeral. He wanted a simple burial in a pine box in a cemetery in the middle of the woods in the mountains he lived in and loved so much. He got to pick out his casket (known thereafter as “the pine box”) and grave (known thereafter as “the campsite”, and decorated in red for visibility like his real campsites were). He said the graveyard was so beautiful and peaceful, he didn’t want to leave. Nobody exactly said so, but I’m sure everyone including him was thinking “Soon, too soon, you won’t have to.” :-(

He read my poetry blog a lot. He said he got to know all kinds of things about me that he’d never known before. I think the tables have turned, but more on that later.

I had been trying to learn to write concisely, and that has included writing haiku and tanka (as well as things with the same basic format as haiku and tanka, but not quite the right subject matter).

He didn’t want a funeral, just a burial.

Four old men and my dad's pine box.

Four old men and my dad’s pine box.

They dug a hole in the ground, lowered the pine box in, and my mom threw in five daisies from their garden, one for every decade of their marriage.

Daisies tied together with red ribbon.

Daisies tied together with red ribbon.

Then she read some prepared words, including three of my tanka:

When the box was in the ground everyone gathered around the grave. I said I wanted to say a few words and repeat them here.

“We his family commit Ron’s body to the ground. 

Earth to earth, dust to dust, ashes to ashes.

May Goodness bless him and keep him.

May Love absorb him and its grace give him peace.”

I will now read three tankas written by our daughter Amelia.”

 

 

 

 

Spectrolite Eulogy

spectrolite looks brown
but shines rainbow colors when
the light hits it right

you were plain brown rock with
hidden colors no one saw

Goodbye Father

I dropped a rock
into the world’s deepest lake
turned and walked away

until I dropped that rock
never had I said goodbye

Love and the Ocean

just one drop of rain
fell into the wide ocean
dissolved in the sea

Ron dissolved into Love
where Love is, so too is Ron

I looked up then to find that every man had tears in his eyes and [name redacted for privacy] was openly weeping.

Your words Amelia, while written and read for your father had profound effect on grown men seasoned by war.  Never under estimate how words can touch a heart.

I thanked all for coming and we all walked down together.  I was given yet another rock found three feet into Ron’s campsite.

 Kodiak and Daisy were in the car and together we drove to Happy Camp. Later coming back I saw [two of the men] on the hillside diligently shoveling in to fill up the grave.

They promised to leave a flat area on one side I think so I can come back with a chair whenever I want.  I am glad for that. There is a temporary marker there with his name and dates that will stay there until a permanent stone is designed and fashioned.

I felt your father would have approved of everything done today.

It was the simple burial he wanted. 

Thanks to each one of you his wishes were realized…

Heartfelt thanks, Mom”

My father knew he wouldn’t make it to the holidays, so he chose early, things to send to me:  His hat collection (hats were very important and meaningful to him).  A whole lot of what I’ve come to call “dad-shirts”.  Rocks from his rock collection.  A bag of treasures found around the farms and mountain homes he lived in as a child. And through all these things, plus some conversations we had very near the end (some of which involved us just staring at each other over Skype chat, not typing or saying a word), made me realize that he spoke my language all along, or rather that I spoke — inherited — his.  The things my mother has been sending me of his, all tie together to communicate deeper truths about who he was, than I ever thought I’d know.

He was also working on a novel when he died.  He was a good writer, far beter than me, it’s just like it came naturally to him after 70 years of not writing a thing. He took a lot of pride in the fact we were both working on novels at the same time, so now of course I have to finish mine.

Not many people knew my dad well.  Because he was on the spectrum, and because somehow his appearance evoked stereotypes that had nothing to do with his personality.  It took me a long time to realize that people outside the family had a very different view of him than people in the family did.  That’s what the spectrolite poem was about.

I’m going to miss him forever, but at the same time, as always, he doesn’t feel like he’s gone. Just feels like he’s in a part of time I don’t have direct access to.

Autistic catatonia + adrenal insufficiency and/or myasthenia gravis.

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So as far as I know I’ve been/had:

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

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

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

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

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

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

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

 

Deliberately stressing me out is, at this point, assault.

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That’s how I see it anyway.  I don’t mean disagreeing with me.  Anyone who wants to disagree with me can disagree with me as much as they want to.  I’m talking about personal attacks, and you people know who you are by now.

I have severe adrenal insufficiency.  For those who don’t know what that means, it means that my body is not making cortisol.  I have to replace all of my cortisol with a steroid called dexamethasone, and I will be on dexamethasone for the rest of my life.

Cortisol is one of the hormones that is called a stress hormone, meaning it gets used when you are under physical or emotional stress.  This means that people with adrenal insufficiency have to be extremely careful when our bodies or emotions are under extra stress.

For instance, I recently had aspiration pneumonia requiring antibiotics.  This means I had to triple my dose of dexamethasone to avoid what’s called an adrenal crisis (click through to Wikipedia if you want the details).  Adrenal crisis is how people with adrenal insufficiency tend to die.

It’s not just physical stress that can cause an adrenal crisis, however.  It’s also emotional stress.  Wikipedia’s commentary on prevention of adrenal crisis is, I quote:

Adrenal crisis is triggered by stress and hence people with adrenal insufficiency need to avoid stressful situations.

That’s very important for managing adrenal insufficiency.

I recently found out that my father is dying of cancer.  We don’t know how long he has.  It has metastasized into several organs to the point where they haven’t been able to trace it back to wherever it originated.

My mother, his only caretaker, has a more severe form of a neuromuscular junction disorder (probably myasthenia gravis) that I also have.  She has to not only take care of him, but do all the jobs around the house that he used to do.  Before all this started, she had a myasthenia crisis and almost died in the ICU when she stopped breathing earlier this year.  Doctors have warned her that she’s not able to handle this and that she needs to move closer to a hospital.

My parents recently had to temporarily evacuate their home due to a forest fire that went right past it.

My grandmother has been slowing down and in poor health, but in a vague enough way they don’t really know what’s going on.  She says she’s willing to take antibiotics, but draws the line at invasive treatments like surgery, if they figure out what’s going on.  She says she’s led a good long life and she’s at peace with death.

I am under more stress right now than I have ever been in my life.  I have to consistently take a higher dose of dexamethasone than normal, just to be able to minimally function.  My endocrinologist says I’m doing the exact right thing.  But taking the extra dexamethasone doesn’t magically make the stress or its effects and dangers disappear, it just makes you safer.

I reserve the right to delete whatever posts I want for whatever reasons I want.

I reserve the right not to explain to you why I’m deleting your posts.

I reserve the right not to owe any of you an explanation for anything I do on this blog, or in my life in general.

And if you come here deliberately trying to antagonize me — and you know who you are, because you’ve been doing it for years — I will treat it the same as if you walked up and tried to start a fistfight.  Because right now, more than ever, any stress can have a catastrophic effect on my health.  Adrenal insufficiency is the worst disease to combine with stress, and myasthenia gravis doesn’t help either, especially now that I’m going on Cellcept (an immune-suppressing drug).  And don’t try to tell me these diseases aren’t real, my doctors who in both cases did the labwork personally, will laugh in your face. And to be abundantly clear it’s adrenal insufficiency (i.e. they could not find cortisol in my blood at all), not adrenal fatigue (i.e. a condition used by quacks to blame literally any symptom on, regardless of your actual hormone levels, which then puts you in danger because you’re not getting treatment for whatever the real disease is).

So if you disagree with me, disagree with me.

But if you’re here to antagonize, to bully, to start fights, with a chip on your shoulder, to threaten me, to accuse me of not really being disabled, to deliberately trigger my PTSD, and all the other things that stalkers and trolls like to do for fun?  Fuck off back where you came from and never bother me again.  And understand that if I actually enter an adrenal crisis because of stress you caused, then you are partially responsible for what happened.  I guarantee you the adrenal insufficiency is 100% the real deal, no matter what you think.  And people who know me will view you as responsible.  If you have enough of a conscience to care about things like that, then think about it before you pick fights with me for fun.  I have enough going on right now without that.  Have some basic human decency for once.

Lock and Key

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If I could hand you just one thing
It would be a Mason jar
Filled with mud
Collected at twilight
On a rainy day
From the ground
Underneath a nurse log
In a redwood forest
In San Mateo County

If I possessed this Mason jar
It would be my most prized possession
I would sleep curled around it
Every night, all night long
I would keep it always
Closed up tight as it could close

And I would hand it to you
So that you could see all my secrets

Because only a trustworthy person
Would be able to find my deepest
And most beautiful secrets
In an old Mason jar full of mud

Anyone not fit to find them
Would never see them in the first place

Mud is the perfect lock and key to my soul

Almost Alike: A Medical Cautionary Tale

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Blue medical bracelet with a medical symbol in white and the words "Adrenal Insufficency" on a metal plate.

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.