Disability blog carnival #13 is coming up, and I’m going to be hosting it.

Could someone who runs the carnival thing tell me what the submission deadline is supposed to be? I don’t know it. All I know is that I’ll be posting stuff on April 26, 2007. (USA, eastern time anyway.) And I know that I’ve already gotten a few submissions before I’ve had a chance to post about it or set a topic.

Anyway, given a lot of conversations I’ve been having lately, the theme is going to be “What box?” As in, there’s boxes we’re expected to fit into and conform to as disabled people. You could write about the box, you could write about not knowing there was a box, you could write about what happens when you step outside the box (if anyone even notices), just in general the theme is anything having to do with the box (the limited amount of stereotyped traits and experiences we’re “supposed to” have in a lot of people’s eyes) in its varying manifestations (including some that are impairment-specific, and some that are more general).

You can submit stuff using this form.

And don’t forget to submit other people’s posts because they might not submit them themselves. (I often forget to submit my own.) And if the person who runs this could email me with more information on how to do this I’d be really happy.

Edit:

1. The submission deadline is Monday, April 23, although if you email me with stuff after that I can try to get it in (no guarantees).

2. I’m having my wisdom teeth out on Wednesday the 18th, and I’m having a nasty sort of feedback-loop of pain between this tooth and my migraines, so I’m not giving a whole lot of guarantees about the rest of it being on time either, but it will get up one way or the other.

There’s a number of things I haven’t done.

Many people have written asking for copies of my “In My Language” video. I don’t know how to even begin to do that.

One person I’m privately corresponding with at the moment would probably like me to hurry up with my explanations of which things CNN got right and which things they got wrong. I don’t know when that’ll take place, but I’m working on a specific part of it, more to do with the reactions I get where people assume I share certain attributes with their children that I don’t.

One person sent me a release form and wants me to sign it and send it as soon as possible. It took me several days to print it out (not as weird as it sounds, I have to boot to Windows to print at the moment so that’s an extra step). I have told my staff to absolutely somehow force me to sign and send it tomorrow morning.

CNN themselves probably want a response from me soon. I’m working on it.

There are a number of topics that I have meant to write about that I can’t actually remember at the moment.

In the meantime, there is some stuff I would like to say. When I say this stuff, I’m not looking for emotional responses, I’m just trying to give a broader picture of my life.

I am not just autistic. I also have a number of other things going on, which I’ll just give the medicalistic labels for here. I have migraines severe and constant enough that in themselves they’d be considered severely disabling. I have wrist tendonitis (and I type to communicate, so that’s more a big deal than it sounds), a jaw that wants to dislocate and causes pain, and some sort of undefined knee problem (the right one pops out of place a lot and hurts when it does that), as well as general joint pain (all of which may or may not be associated with hypermobility syndrome, which I was told I have a few weeks ago). I have some kind of neuropathic or central pain. I have stamina problems (currently classified as chronic fatigue syndrome, but possibly associated with some of the other stuff I have going on). I have asthma. I probably have undiagnosed Tourette’s and OCD (I have tics, obsessions and compulsions, but I’ve never had it diagnosed as anything). I have stomach and bowel problems. I have PTSD. I have movement stuff that has been classified as catatonia. I have complex-partial seizures, although they’re really well controlled and only happen a couple times a year by now. I probably have brain damage from neuroleptics making the movement stuff more obvious. And a partridge in a pear tree. (A lot of these are lifelong or close to it, not recent.)

I’m not all that fond of the medical labeling system that seems to chop me up into little bits, when I feel like I’m only one person, and certainly not a collection of labels like that, it’s weird to see them all written out. I’ve probably even forgotten some because I think about them as individual parts that little. I’m not fond of the sort of boxes that people seem to assume come with the labels and try to squeeze us into. But those are, in medicalistic terms, the assorted things going on with my body.

I also have a life outside of the Internet. I have a human friend as well as a dog and a cat. I have things I’m supposed to be writing and doing. I have staff who require interaction with. I have the various daily activities that take a lot more “spoons” out of me than they would out of most people. I have a weekly class I take. I take my dog to the park. I have meetings I am supposed to attend and be capable of responding to and understanding speech. I have assorted short-term urgent things. I have a friend who sometimes requires assistance with things when her staff aren’t there (aside from the time we just hang out together). I have a family to keep in touch with. I have various long-term projects. I have a certain amount of necessary “downtime” where I am not processing things like language-for-meaning and so forth (if I don’t take that downtime voluntarily, it will happen involuntarily while I’m trying to do everything else, and even so it often does). I make videos. And all of this, both the parts that are traditionally “work” and the parts that are traditionally “recreation”, take a large amount out of me to the point where I am rarely getting all of them done.

All this to say a couple things:

Don’t assume something you see me do (or not do) is because I’m autistic, just because you know that I’m autistic. The reason that I have to move from foot to foot when I stand, for instance, is because my lower legs hurt a lot if I stand on them too long so I have to stay in constant motion when I’m standing if I don’t want to deal with pain. I doubt that’s because I’m autistic. I was just explaining that to a friend I’ve known over half my life (after we went somewhere while I walked and she saw this), and she was a little surprised.

Also: There’s a reason I’m not employed. There’s a reason I get so much assistance with things. There’s a reason that I don’t get to every single thing I’m supposed to do on any given day. I work really hard to do the things I do. I sit at my computer and type things with migraines that would send most people to bed, and I don’t mention those migraines unless they get much worse than usual (and usual is already pretty bad). Every day there are many things I both need and want to do and can’t get to. Much of the time I can’t even do the recreational activities I enjoy — those take a backseat to other things (plus I am, as described by my friends, almost outright puritanical at times about recreation and other “frivolities”, at least when it comes to myself).

I do not want the usual emotional reactions that come with litanies like this. But I would like a tiny bit of leeway about not getting to every single possible thing I could be doing, and the fact that even though I might be a good writer, I can’t just spit out words on demand on every conceivable subject. Not on my demand or anyone else’s.

Many of the things that are not writing, I’ll give an example today. I was writing a long letter to someone I know online, about my long and illustrious history of having a facade of “crazy” instead of a facade of “normal” when I was younger (which I suspect happens to a lot of us who can’t manage the facade of “normal”). So that was writing. Meanwhile I had a staff person coming up to me and asking me a lot of questions, which makes sense because she was new. I was hanging on to the writing by a thread already. In the background, all meaning was falling away from everything, including her words. I could only seem to gesture half the time by moving my arms up and down and hitting my legs. I was seeing more patterns of light and stuff than anything she meant to see, although she did keep trying to give me visual examples of what she was asking (since I could barely understand a word she was saying), which didn’t always work either because visual comprehension was on the fritz. I couldn’t read the letter I was writing to the online friend either, and I was getting strained with the generating of language and memory to write the letter in the first place. If I’d been a tiny bit more stressed out or nervous about the person I was writing to, I wouldn’t have been able to write an accurate letter at all, possibly any letter.

So basically I could write — barely — but everything else was going out the window to do it. I spent much of the time after the staff person left and I’d finished the letter, running around the house ticcing up a storm (I am glad my apartment complex has thick walls). I’m really overloaded tonight. I also have a wisdom tooth problem that was causing enough pain yesterday that I got my first experience of actually vomiting from pain (outside of migraines, where I’m not sure whether the vomiting is tied to the pain or not).

So… I really wish I could tell people a time to expect things from me that they’ve been needing or wanting or expecting. I don’t have it. Whenever I give someone a time frame, it’s very likely I won’t meet it. But I’m trying. And please keep all that in mind when wondering why I haven’t done something yet, or said something yet, even if it sounds really simple. Today I couldn’t do the “really simple” task (for someone with technically perfect hearing and sight anyway) of understanding what someone was saying or choosing which of two plates to have dinner on. This is very everyday for me, and thus not something I feel horrible or awed about or want others to feel horrible or awed about. I’d just like people to understand a bit of what goes on besides writing on the Internet and answering questions or requests from people on the Internet, and also a bit of the extended list of medicalized jargon used to describe my body, so that they don’t assume motives that aren’t there (or lack of caring) when things don’t get done.

There was a world where everyone was expected to be the same height at the same age. People who were shorter than that height were considered behind in assorted different ways (their body proportions determined which way), and people taller than that height were considered gifted but also weird and possibly shunned as well.

In that world was born a boy who tended to be about a foot shorter than he was expected to be. The boy learned early on to walk on tall stilts so that he would be the same height as everyone else, sometimes taller. He learned to walk on those stilts without touching them with his hands. When he fell, it confused people, but he was always able to get back up on the stilts. When he was on the stilts, he was treated as just the same as everyone else, or as advanced, depending on how high the stilts were on any given day.

As he got older, he contracted a balance problem. It was not a particularly severe balance problem. In a person who could walk without stilts it would make little difference at all. But to this boy, it made all the difference in the world: He could no longer walk on stilts. The best he could manage were fairly short platform shoes.

Everyone was scrambling to figure out what had happened to him. After all, he had been “normal” or “ahead” (if walking a little funny and doing things that people couldn’t understand when he had to get off his stilts), and suddenly he was walking on the ground, his normal height.

Meanwhile he became adept at a whole lot of things he had never been adept at before: Running, climbing, jumping, all kinds of things that could be done without stilts. His minor balance problem did not get in the way of these things, but it did get in the way of everything he’d been able to do because of the stilts.

People assumed he had shrunk and tested him for all kinds of conditions that can cause shrinkage, even though he hadn’t shrunk at all, he had merely lost the ability to use his stilts. People questioned his ability to be described as the person of the height he actually was, because he had for so long worn stilts to make himself taller. Some believed that he was too lazy to use stilts, even though every time he used stilts he fell on his head. Others assumed he had never used stilts in the first place and were astonished at all the things he had learned to do while able to stand at the same height or taller as everyone else (this society was inaccessible to people shorter than the designated height, so shorter people did not have certain advantages), thinking he must have benefited from recent techniques for teaching shorter people (when he really hadn’t, although he now made use of some of them since he couldn’t use his stilts anymore).

But all he was was a boy who was shorter than average and had made himself stilts to walk on, and eventually become unable to use the stilts anymore. He had not shrunk, he had not in essence changed, he had just lost a particular rather minor ability, and for that matter gained several others in the process. The only reason it seemed like a major change was because his society valued apparent height over nearly all else, and it overshadowed their ability to perceive what had really happened to him.

Laura Tisoncik has caught on that I can bake now, so she gave me this recipe for paska with almonds. Paska is apparently a Slovak Easter food. I am not sure if I got the shape right, because all the combination of the recipe and her told me was to braid the bread and make it into a ring, but a ring that was so close together that it might grow together as it baked. And I’ve never seen paska before.

Here’s how it turned out:

(Edit) Here’s how the second one turned out:

Here’s the recipe from the book she lent me:

PASKA (With Almonds)
(Another Specialty for the Easter basket in Eastern Slovakia)

1 cake yeast
2 tablespoons warm water
1 cup warm milk
1/4 cup melted butter
1 1/2 teaspoons grated lemon rind
1/2 cup sugar
1/8 teaspoon almond extract
2 eggs well beaten
3 cups sifted flour
1 egg yolk
1 tablespoon blanched almonds

Dissolve yeast in warm water and add to lukewarm milk. Add butter, lemon rind, sugar, and almond extract and mix well. Add flour and eggs. Knead until smooth and allow to rise until doubled in bulk. Then knead again. Divide dough into three parts. Roll each portion into a long strip. Braid three strips into roll. Place on buttered pan, cover with towel and allow to rise until doubled in bulk again. Brush with beaten egg yolk. Sprinkle top with thin slivers of almonds and bake in moderate oven for about 30 minutes.

She informed me that “moderate oven” meant 350, so I went 340 since my oven is too hot. And we used crushed almonds instead of sliced almonds, because that’s what we had.

This is from the Slovak Catholic Sokol Cook Book, Third Edition from 1976.

I have heard of two autistic people, one I know, and one I don’t, attempting or thinking of attempting suicide recently.

I remember a few years ago hearing that an autistic woman had included my article — written at the age of 19, with a lot I’d have changed by now — The World I Want to Live In, in a suicide note. I can’t remember if she actually attempted suicide, and I can’t remember, if so, whether she survived. I think she disappeared at some point. I hope she’s still around.

And I remember way too well thinking that death was better than anything life had to offer. Thinking that I wanted things better but that they couldn’t possibly really be better.

And then being astounded when I survived a bunch of inept attempts on my own life, a couple inept attempts by others on my life, and several gradations of hell, to find myself in a situation that is a lot better (and a lot different) than anything I could have thought up when I was in the worst of my despair (or frankly anything I could have thought up even when I wasn’t despairing). Not that I’m living any kind of fairy tale, or that my life isn’t difficult, but it’s better than it ever was before.

But even besides that.

I’m thinking of a post I read on Women of Color Blog called The Women the World Requires.

And a quote from it, “Which means that for our communities, death is not the ultimate fuck you–living is.”

And despite the immense differences between our communities and the communities talked about in that blog entry, that one statement is also true for the autistic community, and the disability community in general. People expect us to die off. A lot of them even want us to die off. The pressure to die is far greater at times than the pressure to live.

I’ll never condemn a suicidal person, because I’ve been there, but I’ll hope and pray that from somewhere they will get the strength to keep living in spite of, even in defiance of, a world that too often says we’re better off dead and forgotten as quickly as possible. Even if it’s just dragging through one nanosecond after another, each one seeming like hell to try to get through, even if you’re sticking around for something that you think would seem stupid and trivial to anyone else, even if you’re only sticking around because you can’t get up the energy to follow through with suicide… that’s how it goes sometimes. Things can get better. But (and no matter what some asshats may tell you in contradiction of this — and by definition anyone who tells you the opposite of this is being an asshat) even at that point where you’re totally convinced things can never get better and that my words here are meaningless and so on, the world is better off with you in it than out of it. That’ll be true whether you can manage to believe it or not, and the rest of us know it.

Edit: Can anyone, especially anyone in the UK who knows Danni, please let us know if Danni is okay?

At Rational Longevity right now there is the post Mini-Review and Miscellany, which addresses something I’ve noticed as a writer myself:

I was discussing the whole phenomenon of online writing with a friend recently. One of the concerns she expressed was the fact that if she writes something now and posts it publicly, what happens if she changes her mind later on about something she wrote? I responded by stating that if I were following the course of someone’s developing opinion set and self-concept over time, it would look a lot weirder if nothing about that person’s opinions or interpretations of events changed over time, than if their later writing and apparent mindset didn’t resemble their earlier material in the least.

People are not static entities, and as each of us encounters and integrates new information about ourselves and about the world, it’s perfectly valid and undeniably sane for our expressed opinions and observations to change in terms of their tone and content. Existence is Wonderful is barely a year old at this point, and already I can look in the archives and find examples of statements that sound both awkward and ignorant in comparison to my present understanding of things. I expect that to be the case for years to come, (and, more than likely, so should you if you’re in the habit of writing and posting your writing online). Though there’s nothing wrong with holding principles, and there are certainly points at which any person is likely to encounter a “best possible fit” explanation or an undeniable fact that continues to be true into the indefinite future, viewpoint evolution is part and parcel of existence as a dynamic entity, as a mind equipped with a feedback system.

So, in other words, don’t be afraid to write because you think you might change your mind later. Be more afraid if you find yourself writing and writing and never changing your mind!

I have noticed a lot of changes in my opinions and writing over time. Many of the articles I still have up on autistics.org, I don’t entirely believe in the ideas anymore, or have a more complex view on the topic than I used to have. But I leave them up because I think they have some idea that might be useful to someone, and because it’s a futile task to deny that I am in some cases eight years older and have eight years more experience and ideas, and eight years from now my views will have grown into something else entirely. If I wanted to decide not to write anything that I would later disagree with, I wouldn’t write anything at all, because I really hope a person would change their views as their experiences change and their perspective broadens.

I’ve written things that, frankly, I’m loath to even read for fear of what I’ll see, but I keep them published because if I didn’t I might as well not write any of what I’m writing now. Language is a crude approximation to begin with, it seems arrogant to assume that I have (and will then write) the absolute truth right now and will never find something more truthful, and arrogant to deny that humans are always in a process of learning and discovering new things, and never comprehending the whole of things with these little brains of ours. But the whole act of looking for the truth and communicating what we’re finding can be extremely useful.

Quakers (at least of the unprogrammed variety) hold our religious services by seeking the truth together, not one minister preaching to everyone else, but everyone coming together to pray. If we believe that the Holy Spirit has given us ministry to share with the rest of the meeting, we share it, where the entire meeting is supposed to, while also praying, test the ministry to see if it seems to hold part of the truth. It’s basically a collective search for spiritual truth (and I’m sure there are less clumsy ways of expressing it than I just did).

I view a lot of online writing as a secular version of something similar. A lot of people writing a lot of things, and influencing and being influenced by each other (and the rest of their environments) as everyone looks for the truth. Our version can (because of some fairly big differences between online discussions and the Religious Society of Friends ;-) ) take a lot of other forms, but I see the same sort of dynamic at times of people sincerely looking for what is true, and saying what they find to the best of their knowledge, while that is tested against other people’s knowledge, and it all gets refined (or not) as things go on.

I agree with the author of Rational Longevity when she says it’d be really weird, in this context, if someone never changed at all.

This is not the way I wanted to tell you this, but there are things going on I think you should know about. He’s here in the barn with me and I can’t see him in the kitchen. Do you understand the point of trying to do this? I don’t. There’s people involved in the way things will pan out for us. I don’t know about you, but there’s some seriously funny things going on. How would we be better served by this option? I could tell you, you know. From hearing your account of the possibilities, I’m beginning to think that you have a cat in there. There’s enough data to tell you otherwise of course. And I wouldn’t dream of claiming the opposite. But you never know, do you? I’ll leave and be back in awhile after the out turns in and in turns out okay.

An autistic girl I know of has been described as having disorganized thinking, based on the way she communicates. What do you think of the above paragraph I quoted? Does that reflect disorganized thinking, as far as you’re concerned? If you’re a psychiatrist, would you assume the person saying something like that is unable to think clearly?

Actually, what that is is something very simple. It’s the mechanism by which I produce language, stripped naked of any pretence of connection to my actual thoughts. I have a gigantic store of phrases and rules to combine those phrases. It took me quite a long time to develop the full understanding of there being pretty much one absolute (if broad) accepted use of language: To translate something about me into words so that someone else can translate those words into something about how they understand the world.

I had that vast repertoire of pattern-matched phrases and sentences, and could even pattern-match them to situations I was in, and make it quite convincing. What took time to develop and anchor was the connection between all those pattern-matched phrases, and things I was thinking. I never managed to fully get those patterns into my speech (or if I did, I lost that ability along the way somewhere and had to relearn it — I’m never totally clear on certain aspects of my own development). I’m far better at it with typing. I make my word-generating device (I used to call it “The Translator”) work for me these days, instead of just spinning off on its own track.

But it is incredibly easy for me to just let go of one step in the process. That step is the step between having the plausible phrase-combinations, and grabbing the correct phrases that pertain to what I’m trying to say. I developed an attachment to that step late enough that I still have all the mechanisms in place to not take that step at all. I could spin on for pages with paragraphs like the first one in this post. Or things that spun off of other words I heard, or situations, so that there was a tangential association but nothing direct, all pattern-matched with a fair degree of pattern-matching finesse. Without necessarily referencing my thoughts all that much.

Donna Williams once described it this way:

Those battling with extreme impulse control challenges who are echolalic with lots of stored phrases which fire by association or at random, have a very different battle in order to develop functional interpretive language.

To use an analogy, the first group are essentially trying to get a new born horse to walk and to walk well without clumsiness. The second group are trying to tame a young wild stallion nobody can come near so it can interact in a comprehensible and relatively intentional and controlled manner. Asking the first group what its like to tame dysfunctional language and progressively lead it to functional language (typed or spoken) is like asking someone in the hardware store to give you expertise on shoes.

The first group she is talking about, are people who may be slow to develop language, but don’t have language developing in these weird patterns all over the place, and just have to develop it much more carefully and slowly than a lot of people. The second group she’s talking about are people like me. People who have bits and pieces of language skills doing bizarre things that are at odds with language-based communication rather than just having absent language-based communication. Not that these two groups are mutually exclusive, I’d be willing to bet there’s plenty of people in both.

It’s sort of like the difference between two other things, both of which I experience on a regular basis. One of which is the inability to move, because I just can’t get the signals to reach (for instance) my arm, or can’t locate my arm in space. The other is the inability to move where I want to move because I send the signals out but my arm does something totally different — perhaps the opposite of what I intend to do, perhaps even something destructive like hitting myself. The second one requires control from two different directions and is much harder to manage. Sometimes in the second case all the control I can muster is used up on keeping myself from taking the wrong action, and I have no more energy left over to take the right one, so I end up looking outwardly as if I’m doing nothing, when inwardly I’m struggling to contain essentially a complex motor tic.

Speech is like that for me, so much so that I have little hope of disentangling it enough for speech to be useful for me in the future (not that this bothers me, I have typing, which has proved far easier to disentangle). It’s exactly like trying to ride a wild horse that goes every which way, and occasionally getting it to go vaguely where I want to go, but if I get one sentence of what I mean in the middle of ten that I don’t mean, nobody’s going to be able to pick out the difference, and I can’t easily filter for it. As it is, I just suppress most of the spoken echolalia and vocal tics if other people are present (and not all autistic people can do even that much), and that’s the most control I can hope for wresting from speech.

The “disorganized” sentences quoted above are just my speech mechanisms stripped naked of all intent to communicate. That is the raw uncensored materials from which I build my real sentences. But it’s a language mechanism. It’s not reflective of the pattern of my thoughts, and any attempt to view it as such would lead to total confusion about what I am thinking. I have other language mechanisms, too, requiring more effort and sophistication, but still not adding up to communication (and I have others that require less effort and look far more disjointed and irrelevant). I have a whole repertoire of language-patterns that have nothing to do with connecting those language-patterns to my thinking. I could easily demonstrate most of them, I’ve lived much of my life using a combination of all of them to get by. (By the way, if a person’s receptive language ever tests as far far far below their apparent expressive language — which mine did when I was initially tested as a child — that’s a major warning sign that something like this could be going on.)

The most important thing to know about this is that thought is not language and my perception of the world is quite a bit clearer than a person would imagine if they were to only read the raw output of my language mechanisms (language mechanisms that I have trouble at times wresting control from). Another important thing to note is that a person can have this kind of language trouble alongside actual communication, and the signal-to-noise ratio can vary greatly.

But this is language. Thinking and perception of the world is something different than just the language a person produces, at least if the person is a person like me, or like many other people with the same language-processing differences. I can perceive the world quite accurately and in a non-disorganized way, this is probably demonstrable through non-language-based assessments, I do so largely without the use of language to help me do it, and blurred and tangled language on my part does not reflect my take on reality, just my brain’s take on language production (I still can’t figure out why so many people have thought and language so intertwined in their heads that they think that if one is messed up the other will be).

I fear for the safety of the little girl who has just been diagnosed with that by a clinician clearly ignorant of the varieties that autistic language differences can take. People who have the sort of difficulty I do with language need to learn how to steer our language production in the direction of meshing reasonably well with our thoughts. Too often what happens is we get trained to conform our language to what someone else thinks we must (or should) be thinking, in the assumption that by changing our language, they are actually organizing our disorganized thoughts for us. What that really does is push language even further away from communication for us, and into the realm of repeating what other people want us to say.

Instead of manipulating our language while claiming to be making our thoughts clearer, people need to teach us in some way (and there are many ways to do it, many of which are not things most people would think of in terms of teaching language) how to take our ability to repeat phrases (or sentences, paragraphs, songs, whatever) and make the words we repeat as connected as possible to the things we’re actually thinking. The things done ostensibly to help people who have trouble discerning reality or “disorganized thinking”, are light-years away from, sometimes polar opposite of, what autistic people with this form of language difficulty actually need to learn.

This is an issue of a gap between thought/perception (including thought that isn’t necessarily consciously perceivable to the thinker, of course) and language, and a gap between language and communication-of-thought. It is not an issue of a gap between thought/perception and reality.

I’m not generally into doing the nitty gritty details of medicalistic categories. But I’ve ended up having to write things like this out (mostly from memory) so many times lately, that I thought I’d write it down in one place and get it over with. Be aware that I do not agree with the official ways that autism is divided up. When I write this, I’m reporting how something is used, I’m not agreeing with the usage. When I talk about PDD-NOS (pervasive developmental disorder, not otherwise specified) being used “correctly” and “incorrectly” below, I mean “in accordance with official criteria” and “outside of accordance with official criteria”.

A lot of people online say things like:

“PDD-NOS entails a language delay.”

“PDD-NOS kids have a specific way of interacting socially that autism and Asperger kids don’t.”

“PDD-NOS is the intermediary between autism and Asperger’s.”

“PDD-NOS refers to mild autism.”

“PDD-NOS refers to high-functioning autism.”

“PDD-NOS refers to very low-functioning autism.”

“PDD-NOS is more severe than Asperger’s but less severe than autism.”

“Kanner’s Autism is the least varied in presentation, Asperger’s and high-functioning autism the most, and PDD-NOS somewhere in the middle.”

And so on and so forth.

As far as that autism spectrum severity wedge goes, with “Kanner’s” autism at one end, “Asperger’s” and “high functioning” autism at the other, and “PDD-NOS” in the middle, with “AS/HFA” being the “most varied presentation,” I beg to differ in a number of areas, and would direct people both to this post (which seems to show PDD-NOS is the most varied of any autism category, just by its nature) and to my old post on what does “Kanner” actually mean?, because, to quote Inigo Montoya, “You keep using that word. I do not think it means, what you think it means.” In several respects.

Even though the official categories of autism and Asperger’s can be indistinct, they are nowhere near so indistinct as the category of PDD-NOS. This is because PDD-NOS, far from being a distinct thing, is meant for anyone who doesn’t fit into a few narrower categories. It’s also frequently used outside of accordance with the actual criteria.

Here’s how it’s used in ways that the criteria don’t even cover:

• A doctor sees an autistic person and says, “This person cannot be autistic, because he makes eye contact, or shows affection, or likes to socialize (even if in unusual ways), or seems aware people exist, or has a normal IQ.” In other words, the person does not fit the doctor’s stereotype of autism even though they might meet official criteria for autism or Asperger.

  Roy Grinker describes his daughter’s diagnosis in the nineties:

  [The psychiatrist] showed us the criteria for autism and related disorders, all classified under the heading of “PDD,” and then drew our attention to PDD-NOS, Isabel’s diagnosis. But it seemed to me that Isabel did meet the criteria for autism. She couldn’t make friends or communicate with words or gestures. She used repetitive speech and was preoccupied with lining things up in a row. So why didn’t he say she was autistic?

  He explained that while it was true that Isabel had most of the features of autism, she had them to a lesser degree than many of the other children he had seen in his years of practice as a child psychiatrist, and she showed no evidence of being mentally retarded (though the absence of mental retardation never rules out an autism diagnosis). In retrospect, I think he may have been afraid to give us a devastating diagnosis like autism when Isabel was so young and in some ways functioning at a higher level than the children he had seen. As a child psychiatrist from Fairfield County, Connecticut, told me recently: “Things are different now. Even in the mid-90s, autism used to be like the ‘c’ word [cancer], and I didn’t use it if I didn’t have to. So it was only the severe cases that got an autism diagnosis from me. The others got ‘PDD-NOS’.”

  In fact, I remember that, despite knowing little about autism, I felt happy that Isabel had PDD-NOS instead of autism. I didn’t realize then that, over time, PDD-NOS would prove to be an ambiguous and cumbersome diagnosis, that it would morph into “autism” or “autism spectrum disorder,” and that I’d rarely use the term PDD again. Today, Isabel is simply a child with “autism”.

  (from Unstrange Minds: Remapping the World of Autism by Roy Grinker.)

• A doctor sees an autistic person and says, “This person meets the criteria for autism, but autism means hopeless, and I don’t want to label this person hopeless,” or “This person meets the criteria for autism or Asperger’s, but will get better services under PDD-NOS.” This was part of the rationale for diagnosing me on paper as PDD-NOS in the nineties, while telling my parents orally that I was autistic.
• A doctor meets an autistic teenager or adult with an ambiguous early history, and proceeds to diagnose PDD-NOS as a way of saying “I don’t have all the data.” (For instance, I was never told until I was practically an adult that I lost some speech early on, and I have no idea if my doctors had been told that either. A middle-aged friend of mine has a PDD-NOS diagnosis because they don’t know her early history despite the fact that she seems to fit the autism criteria.)
• A doctor has an aversion to “labeling” people and only gives them -NOS diagnoses because they “seem less like a label” somehow. (I had a psychologist like this.)
• A doctor sees that a person has another diagnosis and doesn’t want to tease out what’s autistic and what’s from this other diagnosis. (I’ve met clearly-autistic people with cerebral palsy who got diagnosed as PDD-NOS because of this, even though they met criteria for autism or Asperger’s. This can also happen to people with Down’s syndrome.)

Okay, so that’s just the number of ways that are not exactly in keeping with the real criteria. Some of them used to be used more frequently than they are now, but many are still used this way today. Those are not actually in accordance with the criteria, they’re in accordance with the doctors’ wishes or prejudices for various reasons.

Even what meets the official criteria, though, is still pretty varied. Here’s the official criteria. I’m going to include both DSM-IV and DSM-IV-TR criteria since that changeover is fairly recent (2000) and there are still kids diagnosed prior to then who have this diagnosis, and also ICD-10:

DSM-IV criteria for PDD-NOS:

This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypical Personality Disorder, or Avoidant Personality Disorder. For example, this category includes “atypical autism”– presentations that do not meet the criteria for Autistic Disorder because of late age of onset, atypical symptomatology, or sub threshold symptomatology, or all of these.

DSM-IV-TR criteria for PDD-NOS:

This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal and nonverbal communication skills, or with the presence of stereotyped behavior, interests, and activities, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder.

ICD-10 criteria for atypical autism:

A pervasive developmental disorder that differs from autism in terms either of age of onset or of failure to fulfil all three sets of diagnostic criteria. Thus, abnormal and/or impaired development becomes manifest for the first time only after age 3 years; and/or there are insufficient demonstrable abnormalities in one or two of the three areas of psychopathology required for the diagnosis of autism (namely, reciprocal social interactions, communication, and restrictive, stereotyped, repetitive behaviour) in spite of characteristic abnormalities in the other area(s). Atypical autism arises most often in profoundly retarded individuals whose very low level of functioning provides little scope for exhibition of the specific deviant behaviours required for the diagnosis of autism; it also occurs in individuals with a severe specific developmental disorder of receptive language. Atypical autism thus constitutes a meaningfully separate condition from autism.

Includes:

• atypical childhood psychosis
• mental retardation with autistic features

Some examples of how a person could actually meet these criteria:

• Fitting the criteria for Asperger’s, and not the criteria for autism, with the exception that the person had delayed language early in life.
• Fitting the criteria for Asperger’s, and not the criteria for autism, with the exception that the person has a lower IQ than the cutoff for Asperger’s.
• Fitting the criteria for Asperger’s, and not the criteria for autism, with the exception that the person had a delay in self-help skills early in life.
• (For the DSM-IV, but not the DSM-IV-TR.) Meeting the social criteria of autism alone, without the other criteria.
• (For the DSM-IV, but not the DSM-IV-TR.) Meeting the language criteria of autism alone, without the other criteria.
• (For the DSM-IV, but not the DSM-IV-TR.) Meeting the repetitive behavior criteria of autism alone, without the other criteria.
• Meeting the social and language criteria for autism, but not meeting the repetitive behavior criteria. (Meeting social and repetitive behavior without language is mostly covered by Asperger’s.)
• Having “a few autistic traits”.
• Seeming autistic, but having another condition going on (such as cerebral palsy or intellectual disability) that makes it hard for a person to do enough things to fulfill the autism criteria.
• Meeting the criteria for some other kind of autism, but not quite enough (in number) of the criteria.
• Meeting the criteria solidly in one category, but ambiguously in one or more of the other categories.
• Meeting the criteria, but ambiguously in all categories.
• Meeting the criteria, but meeting them (or some of them) later than the cutoffs for other things.

Every time I see people making broad generalizations about what “PDD-NOS” means, I wonder if they know exactly how varied the people are that the word can be officially applied to. PDD-NOS doesn’t necessarily say anything about “severity” (as most people conceptualize severity). It doesn’t necessarily say anything about language development. It doesn’t necessarily say anything about anything, given the amount of combinations of things it can be used for, legitimately or otherwise, and it’s wrong to make generalizations about “the unique manner in which PDD-NOS kids socialize as opposed to other kids on the spectrum” or “the severity of PDD-NOS as compared to Asperger and autism” etc. Those are meaningless statements.

I’ve been trying to determine what makes an environment more accessible or inaccessible to autistic people — or at least to me. I just got one clue this morning, when I almost swallowed a medication that I was meant to inhale.

I finally got in to see the asthma doctors I made the appointment for in January during the asthma crisis. They were, by the way, really good, determined a good goal for my peak flows and gave me an asthma plan. They also gave me a new medication called Foradil.

Foradil comes in gelatin capsules like many medications do, filled with a white powder. The difference is that Foradil comes with a strange contraption. You stick the capsule in the contraption. You squeeze the contraption to puncture holes in the capsule. Then you turn the contraption on its side and inhale the Foradil, discarding the capsule when it’s over.

Where the trouble comes in, is that I seem to learn things like this on a different level than most people do.

Most people seem to have little trouble applying a particular way of comprehending the world all the time. If they see Foradil, then unless their cognitive abilities are suddenly compromised in a major way, they know it as Foradil, an inhaled product, because they have put it into that category without even trying. They know that with Foradil, you take the capsule out of the foil wrapper, stick the capsule into the contraption, poke holes in the capsule, and inhale through the mouthpiece of the contraption. They know this because they’re constantly applying the category of Foradil or of inhalable to these things they’re looking at, this is effortless or close to it.

I have to be thinking about it to get to that point. By thinking about it I mean exerting a fair bit of cognitive force behind sustaining the idea of Foradilness. It’s not (as some people seem to imagine it) a matter of learning what Foradil is, it’s a matter of access to that knowledge being in place at the exact time when I’m going to need it.

I don’t learn to do things that way, I learn to do things by actions in response to certain general types of things. If something looks like a pill, the associated action is to swallow it, particularly if the pill is situated in my hand. I am relieved that I no longer have to give my cat pills because of the amount of effort it took to suppress the associated action of swallowing them myself. And it’s effort against a tide that feels totally natural. So it’s even one moment of distraction and I could swallow cat pills. Or in this case an inhaled capsule. Today I got it almost in my mouth before I realized.

I do regularly screw up which inhaler I use (because marking one red and one blue doesn’t change the way they feel in my hand), but that’s less problematic than swallowing a pill meant to be inhaled.

Part of what makes an environment inaccessible to me — in the most extreme sense — is that things in it are set up (such as pills that should not be swallowed, or drinking cups used to hold toxic or noxious substances) so that an automatic reaction to my environment (without engaging abstraction enough to check things like that) could put me in danger. A more accessible environment to me (and I suspect this is more accessible to most people, too, and just happens to be more extreme for me in the dangers of it not being this way) is one that promotes automatic reactions that I should be taking and discourages automatic reactions that I shouldn’t be taking.

For instance, my apartment has all one sort of flooring — tile. My last apartment had alternations between tile and rug that made it hard for me to get around. This one little change has made me more capable of using the refrigerator, microwave, and toilet even on foot. I also have clear locations for different activities, which allows me to associate different sets of actions with different parts of my apartment. Things like the computer and bed are out in the open so it is easy to get to and from them. But it is not particularly easy to get out a window.

These things also have to take place in the absence of signs. Here’s some illustrations I once did of the assorted fun variations words can take:

The actual text:

This is how it would be read by most people:

Unrecognizable letters

This is where I can tell it’s letters and am processing them as symbols, but don’t actually decode the letters. (They do not, for me, actually turn into such seemingly hieroglyphic characters, I was just picking a collection of things that are both clearly symbols and not readable to most people.)

Nonsense letters

This is where I can pick out the letters but they clearly don’t really conform into words in my mind.

Unrecognizable words

This is them looking like real words that I can sound out and everything but I don’t get any meaning out of the words even if it sometimes feels like I should.

Part of a letter

This is a small part of a letter, I wanted to do an animated version sort of scoping around the letters but I didn’t. I could get wrapped up in the aesthetics of this curve for ages.

One by one, in order.

This is meant to be like reading one letter at a time, but the letters at least staying in order so there’s a relatively high chance of following at least a little of it with a lot of concentration.

One by one, scrambled order.

This is meant to be like reading one letter at a time, but not retaining the order too well.

Squiggles

This is when the forms of the letters are visible as squiggles but not as a readily recognizable set of symbols of any kind.

And none of that even gets into the sort of stuff that Helen Irlen and Alison Hale and stuff have written about with perceptions text, this is other stuff besides that. (And yes I already wear colored glasses.)

If I put a sign up, it’s generally squiggles until deliberately focused on. Sometimes it can be some of the others, but mostly squiggles. Signs have never worked all that well for me because of this exact problem, they simply aren’t read without conscious application of cognitive force, and you have to know they’re there before you apply that force. If I know they’re a sign I’ll probably read them (for form if not for meaning), but I have to know they’re a sign first.

Rather than signs it’s far more effective to put in various environmental cues that lead me towards some things and away from others. But what the best way to implement that is, especially in the matter of something like Foradil, is a mystery to me at times.