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.