What PDD-NOS officially means.

Standard

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.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

55 responses »

  1. This is so helpful. We received both these diagnoses for each of the boys. My boys are not ‘opposites’ but their ‘symptoms’ are diverse from each other.
    I have read many articles [and did a considerable amount of research way back] but it such a complex issue. People have a hard enough time understanding autism, but if you mention PDD and or [NOS] their eyes glaze over.
    The overlay of ‘PDD’ as being a cop out from the ‘kindly’ physician results in further confusion for everyone.
    I just wish I blogged 4 years ago. Although there is an ocean of information, there are a few gems that shed light. Thank you

  2. I guess my thoughts of PDD-NOS being the diagnosis they give you when you’re autistic but can’t figure out if you meet the criteria for autism or Asperger’s (for whatever reason) is pretty accurate then :)

  3. I’d like to see an explanation of “atypical” autism by you sometime if you could lend insight into that (which I imagine you could with experience you seem to have on the use of labels by professionals). That one also gets used a lot and I’ve heard it sometimes becomes PDD-NOS. I often wonder if that’s a more mature variety or if they use it synonymously as PDD-NOS or if it’s “anything but autistic”. There are so many little “dr. labels” now that I think most people have a right to be thoroughly confused. (and a cause for argumentation) Because as soon as someone says “Well, we just saw a doctor and my child is very unique, they have Peabody-Hatfield-MacCoy Autism and it requires very special special treatment”. Bah. It’s ridiculous beyond the pale to me sometimes. It’s the professional analog of “Indigo Children” IMHO.

  4. er, I don’t know how my brain / eyes skipped it but that was short term memory loss (repetition helps with that I realize but few realize that’s what my repetition is all about) just now and I realize that you did in fact cover the term atypical autism….pardon the faux paus/appearing like I wasn’t attentive. Sorry.

  5. Pingback: Autism Vox » “Milder” Is In the Eye of the Beholder: On “Autisms” and “PDD-NOS”

  6. I am a writer on civilization and human identity. For a while I’ve had a strong intuition that the autism “epidemic” is extremely significant, more than almost anyone expects… a key signpost of our age. So I have decided to learn more about it. I am pleased to have discovered your blog, because the scientific categorizations and expert opinions on the subject reek so strongly of phoniness that I can’t bear to read them.

    I have found much in this website that resonates deeply with me. First your description of school as a preparation for institutionalization. When I visited a prison I was struck by the similarities. All of society is becoming more and more like the kind of institution you are in. The empty space that lies between the expressly permitted and the forbidden is shrinking. Time is being converted to schedule and life to data. School is designed to break our spirits so that we will accept this without protest. And accept as well a programmed life of doing tedious, meaningless, even humiliating tasks for an external reward dispensed by authority. There is more.

    I really loved your comment in a previous post, “To many people, normalcy is forwards and anything not considered normal is backwards.” Yes! This gets at part of the intuition about autism that led me to your site. I’m not quite able to fully articulate it, but it goes something like this: “Autism is a form of unconscious rebellion, the soul’s rebellion, at a world gone wrong.” In a crazy world, to be normal is to be insane. The soul rebels. The rebellion takes different forms in different people. Maybe the autistic are people who sensed very early on that something is so wrong with the world being offered them, and so they refused to enter it fully, or refused to comply with it in various ways.

    I think most efforts to “help” autistic people are ineffective because they are not based on an understanding of just how deeply the wrongness penetrates. For example, a deep source of the wrongness is what I call the regime of representation, the human descent into symbol from a prior state of immersion in the infinity of immediate reality. I found your description of why it is sometimes hard to read very interesting. Could it be that you are rebelling against the lie implicit in representation, that a blob of ink *means* something? So instead you see it for what it is, perhaps an aesthetically pleasing curve. If you read “Labeling the World” (www.ascentofhumanity.com/chapter2-3.php) you will know what I mean.

    On another level, every institution on our planet is fundamentally corrupt, and the people trying to “cure” autism are operating from within the language and logic of one or another of those institutions. For example, I have no doubt that some of the medications you are on are probably keeping you sick. There are ways to heal from every “incurable” condition known, but they are off the radar screen.

    I am not saying that autism is an ideal state of existence, only perhaps that it is a valid response to the world offered us. I suspect that a truly effective therapy would itself have to embody a rejection of “normalcy”. Normal is sick; normal is insane. You are in a visible insitution; people out here are in an invisible one. The levels of loneliness, anxiety, depression, and other forms of pain out here are profound. An enlightened therapy wouldn’t strive to make you normal; it would strive to make you abnormal in a different way. If, that is, you even desire that. If you are happy with the way you are, I’ve got no problem with that. :) Still, I feel sad to think of you living in an institution with so little autonomy.

    Thank you for you work!

    Charles Eisenstein

  7. I don’t live in an institution, so that’s hardly a problem for me at the moment.

    I find that a lot of these trendy ways of rethinking autism aren’t really that rethought.

    Being autistic is still seen as a less-than-ideal state. It’s just that instead of being seen as a pathological reaction to the environment (as it is seen in psychoanalytic terms) or a pathological brain configuration (as it is seen in neurological terms) or a pathological reaction to toxins (as the biomed quacks have it), it’s seen instead as a reaction to a world gone wrong. Which means that in a world gone right, there’d be no autistic people.

    My perceptual system is not a rebellion against the perceptual systems of non-autistic people, or a rebellion against the overly symbolic (in my eyes) way that many people deal with the world. It’s not a rebellion against anything. It’s how I happen to perceive the world, and there’s a place for that, just as there’s a place for all kinds of other ways of perceiving the world.

    I’ve got problems with the lies inherent in symbols, but a lot of my problems with them are because it’s so easy for me to see exactly how lying symbols are. You’ve got things backwards in terms of how I came to these perceptions. It’s not that I first see symbols and understand what they are and then decide “oh this is bad and lying” and go away from them, it’s that I initially don’t perceive them at all, but perceive other things, have to work up to the symbolic level of perception, and then, already having a non-symbolic representation of the world, go “Oh gee these symbols really don’t fit that now do they?”

    I’d continue longer but I have to run, perhaps others can fill in the blanks.

  8. I have dealt with people’s flip usage of “PDD-NOS” and love to correct them. I have an acquaintance who’s son is brain injured (stroke in utero) Given a terrible prognosis and lacking any communication, motor skills she put him through extensive physical therapies. By the time he hit 6 or 7, he was diagnosed PDD-NOS. They are caught in a world between brain injury and autism, because he is still meeting developmental milestones (albeit slowly). She has found more kinship in the autism community as her son is growing up and gaining skills. (Note that is autism community, not autistic community)
    So, there are people out there that aren’t “autistic” but meet enough criteria to benefit from autistic learning styles and some of the therapies designed for autistic children.

  9. Thank you. By the way, the above said, I do think it’s appropriate to address the individuality of autistics but in a way that doesn’t seem to cause “buckets” of people lumped together. The PDD-NOS label also just seems demeaning sometimes like a “no-man’s land” or a “they couldn’t figure out what “they” had.” or the final “odds and ends bucket”. It seems almost to mean a psych threw up their hands and gives up.

    I do suppose treatment for PDD-NOS has improved or that most will treat it the same as autism or become aware of a set of potential autism groups of manifestations in someone. It really seems anyone with PDD-NOS is very likely to be able to get an autism or Asperger (or SPD) diagnosis by simply visiting the right doctor. You wrote a bit about it in some analogy a while back about the bias of doctors. (not sure if linked here).

  10. 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.

    This particular paragraph seems to partly relate back to your post entitled “A Tale of Three Experts”

    I also think anyone reading this post who has an interest in the difference (or lack thereof) among LFA/HFA etc etc would also find it interesting to watch the video interview with Laura Tisoncik at”http://ballastexistenz.autistics.org/?p=240. Laura talks here about how some of the supposed diagnostic divisions between “high” functioning autism and “low” functioning autism are not as meaningful as some people think.

  11. it really irks me that Stephen Shore (autismasperger.net) makes this pronouncement about PDD,NOS being in between Asperger’s and Autism. It also irks me when he talks about shifting to the left (or is it right?) on the spectrum. He obviously doesn’t know what he’s talking about, and hasn’t bothered to check with real experts since he started saying this a few years ago. He doesn’t have credibility with me, even if he is a nice guy in some ways.

    It also bugs me that he fits criteria for autistic disorder, perfectly as far as I can tell, but says he has Asperger’s syndrome. It’s a perfect example of how “Asperger’s” is used to mean “autistic adult,” or “PDD,NOS grown up.”

  12. Very interesting. Bud’s “official” diagnosis is PDD-NOS, according to the developmental pediatrician, but for the life of me I can’t figure out why he wouldn’t fit the criteria for autism. I wonder if we’ve experienced one of those scenarios you mentioned.

  13. Charles Einstein

    In relation to medications, you might want to read http://ballastexistenz.autistics.org/?p=218 — medications are not the focus, but Amanda does refer to some of her experiences with various types of medications (both negative and beneficial).

    Speaking personally, I think it’s usually a mistake to become too dogmatic on medications in EITHER extreme. They aren’t universally good, but they aren’t universally bad either. It basically comes down to the individual person to see what works or doesn’t work in their individual case and decide what medications to take or not take, accordingly. And the right answer for one person is never going to be exactly the same as what is “right” for another person, even if both people have exactly the same mix of symptoms and diagnostic labels. Different people’s bodies respond differently to different medications in ways that scientists are only starting to understand. And environmental factors are also always going to be different too, which can make a difference in how helpful (or not) certain medications may be.

  14. Charles Einstein

    This isn’t in direct response to your question. But you might find it of interest to read http://ballastexistenz.autistics.org/?p=293 on “Let’s play assumption ping-pong–or not” (and be sure to read both of the links that Amanda provides in this post). I believe at least one of the posts touches a little on her history with institutions. But of more general importance, I think you might find that reading these may help you understand some of the other things Amanda writes (or at least help you avoid being too quick to interpret them into your own meaning).

  15. very interesting, thanks. 2 of my students(possibly all 3) are diagnosed with PDD-NOS and they are seriously like night and day. so different socially, academically, with speech, the behavior problems they have at home and at school…and my other student, while he is very similar to one, still has a whole other set of characteristics that are compltely separate. it’s SUCH a broad diagnosis, and I wouldn’t be surprised if they were reevaluated when they were a little older, since they’re still little peanuts now. Presenting my 3 students to someone saying that they all have the same diagnosis would probably open people’s eyes to the range of PDD-NOS.

  16. Andreashettle, I can’t help but remark on your Freudian slip-spelling of “Eisenstein”. ‘Cause Charles, *your* remark was so . . . uh . . . Nietzschean. Or something. Andrea, I freud you. But only symbolically, evidently. I mean, I say one thing and mean my mother. : P

    And Amanda (Baggs), I freud you as well. But only because anybody who quotes Inigo Montoya is a freud of mine.

  17. DD-NOS (dissociative disorder not otherwise specified) is used as a similar trashcan when it comes to plural-related matters. It can mean anything from “this person obviously has several distinct selves who take turns presenting to the outside world, but they communicate well and don’t have amnesia for what happens when others are up front and just generally don’t fit other aspects of the diagnostic stereotype” to “this person forgets a lot and can’t remember their early childhood well” to meaning that someone is ‘too disconnected from their emotions’ by someone’s subjective perception (and therefore assumed to have some kind of dissociation going on). Actually, there are other things I’ve seen it used to mean, but that’s a rough sketch of the extreme variety of things used as rationales for sticking the label on someone.

    (Not that there aren’t psychs who slap a DID label on you the moment you talk about more than one self; we had it happen to us, even after trying to explain that we didn’t feel it was a disorder. When we found out it had been put down as our official diagnosis, we had to try to talk them into changing it.)

    But, yeah… it’s funny how “NOS” in many forms can be used to mean entirely contradictory things. Actually “dissociation” can be another weasel word because, like “schizophrenia,” it’s been used over the past hundred years to refer to a whole bunch of things which have little in common with one another, and every time it’s redefined, doctors start declaring that they’ve found out what “real dissociation” is.

    …I’ve also noticed that some doctors will diagnose people, especially children, who are clearly autistic, with sensory integration dysfunction, apparently for no other reason than that they worry about the parents’ reaction if they say the word “autism.” The whole idea that it’s the kiss of death, like you said, seems to be at work here.

  18. Evonne:

    Oops, so eye kan’t spel! :-)

    I also like the Inigo Montoya line where he goes, “My name is Inigo Montoya, you killed my father, prepare to die!” over and over … But, okay, I guess that would not have fit this post quite as neatly. :-)

    Though, in the movie (Princess Bride for anyone not yet clued in), I think a case could be made that the genius had the right definition of “impossible” in mind but was trying to put that label on the wrong things because he thought they OUGHT to wear that label (of being “impossible”) … though I suppose the case could also be argued the other way that the misuse of a label (whether the label “impossible” or some spectrum related label) inherently implies a misdefinition of the term. Or am I getting too symbolic here? Maybe I’m actually talking about my mother :-)

  19. Re, avoiding autistic labels just because someone already has certain other labels such as “cerebral palsy” or “Downs syndrome”: I see a parallel situation with many deaf students in that it apparently can sometimes be difficult to get a label of “learning disabled” (such as dyslexia), and I think also attention deficit disorder — in fact, apparently in some states (if I understand correctly) it’s even codified in the special education laws that deaf kids CAN’T be diagnosed with learning disabled, or at least not for the purpose of IEP planning.

    I think this labeling issue is partly because many deaf kids DO tend to read below grade level for reasons not related to learning disabilities. But that doesn’t mean that a deaf kid is somehow immune from all the exact same variants in neurological wiring as hearing kids, including the possibility of neurlogical wiring for dyslexia or whatever.

    I wonder if all of these tie back not only to general definitional issues (where the doctors doing the labeling don’t really understand what “autism” or “learning disability” or whatever label) means, but also to the issue where non-disabled people seem to have a great deal of trouble processing the idea of the one and exact same person having more than one disability. (“What, you’re autistic AND you use a wheelchair?” “What, you’re Deaf AND you have attention deficit disorder?”)

  20. Re: the wheelchair thing, I’ve noticed also a tendency to associate the wheelchair use with being autistic. For instance on CNN, they asked why I used the chair, and I gave them my usual complex answer about the motor issues (that can go along with autism but aren’t necessarily there or that prominent in autistic people) and stamina issues and so forth, and the series of events leading me to get the chair, including things like freezing up in public and it taking staff forever to get me home before because they didn’t have a giant spatula they could just pick me up and move me with.

    Then, because I later mentioned offhand that it was easier for me to answer questions lying down than sitting up in my wheelchair, and easier for me to answer them in my wheelchair than standing, they decided to make it sound like I use a wheelchair because of that. Which isn’t the case — that’s an added side-benefit of the chair but not the real reason. If that were the main reason for me using the chair, I wouldn’t have gotten to the point of being basically housebound, often stuck in one spot in the house, before using one.

  21. my parents once had a friend who had acquired various disabilities as a result of, i think, a chemical spill where he used to work.

    he came to a Biblestudy and i was explaining to the other kids who he was, and that he was blind. one of them said “he’s not blind; he’s in a wheelchair!” (um… he was both).

    another awful funny about people’s reactions to that guy’s situation… someone heard that he had “round-the-clock aides” and confused his support staff with his diagnosis (this was the 80’s). “what other kind of AIDS is there?” they asked.

  22. Ooops, you’re right, it IS “inconceivable” — not sure why I was thinking “impossible” but as soon as I read “inconceivable” here I could just see and hear the genius guy (I’m blanking on his name … Santiago?) saying, “in con CEIV able!!

    Thanks.

    And, not quite related to the “more than one disability” thing, but once I was in a three week program for women with various disabilities from around the world, and at the end of that program there was a dinner event with the local community. And that night there was a new interpreter who had not been with the program for the past three weeks so she knew little to nothing about it. And apparently also knew little about international issues. At one point, one of the participants in the program, a woman from Nigeria, was called up to the stage, and the interpreter signed to all of us Deaf people in the audience (interpreting) that she was from Nigeria. Then she suddenly corrected herself and said to the Deaf people and said, “Oh, she’s NOT from Nigeria, she’s from Africa!” Well, normally I try never to interrupt an interpreter when there are other Deaf people in the audience because it isn’t fair to the other Deaf people to distract the interpreter like that, but this time I just had to say something. So I pointed out to her that Nigeria is, er, IN Africa. So now the interpreter emphatically says, “Oh, she’s from Nigeria IN Africa.” So at least she got it right in the end. But, er. I still wonder why on Earth someone would think that being from Nigeria and being from Africa would somehow be incompatible.

    n. … Just imagine how confused people would have gotten if, in addition to everything else, he actually HAD AIDS. I suppose then either they would just pick one of the above and say, “he can’t have AIDS, he’s in a wheelchair” or maybe they’d say something like, “Oh, gee, I didn’t know that AIDS could cause blindness.”

    But sometimes even some of us who ought to know better can slip up. Once, at Gallaudet University, I went to some program I don’t remember now for students with disabilities (nearly all of us were Deaf/deaf–this was Gallaudet, after all–but as at any other university there are also students with additional disabilities). We split up into different groups, and I went to the group for students with attention deficit disorders and learning disabilities. A deaf woman in a wheelchair joined us. And I remember thinking to myself, “Why is she here? Doesn’t she know that the group for students with mobility impairments is meeting over there?” But then as the conversation went on, it became apparent why she had joined us: because she, er, belonged there, just like the rest of us. I should have known better, but obviously for a few minutes I didn’t.

  23. I was actually wondering about whether that “inconceivable” line was lost as a result of butchered captioning — and specifically, whether the lisp was apparent (Hmmm . . . I suppose I’d better not get started on the implications of the “bad guy” having a lisp; then I might spill over into Mel Blanc characters and who *knows* where that’d take me and then I’d go yell at Eric for not writing it into his dissertation, etc . . . but I’m pretty sure that guy, I mean that actor, has a lisp naturally ’cause I’ve seen him in other shows . . .). Andreashettle, not to pry about mechanics (i.e. whether you were deaf in 1987), but *is* that movie available with captions, and have you seen it captioned?

  24. PDD-NOS seems to be the autism equivalent of fibromyalgia in the rhematology world: you don’t fit into the narrow category of rheumatoid arthritis, or MS, or lupus, or [insert rhematological disease], so we’ll call it fibromyalgia to give a diagnosis that gets the patient some sort of medical treatment.

    The diagnosis itself is meaningless as an explanation for the medical process yielding X symptoms.

  25. Pingback: Mutterings Of A Mindless Mommy » Blog Archive » A Great Definition of PDD-NOS

  26. Evonne,

    Pretty much everything on TV now has closed captioning, most VHS movies released in the past while (not sure how long) have closed captioning, and every DVD I’ve ever seen has English subtitles as an option.

    We’ve been using closed captioning and subtitles a lot since our older son was born almost 6 years ago. You can’t follow something on TV if you have an unpredictably screamy baby without it, and if you have a form of central auditory processing disorder (like my husband does), it helps a LOT to be able to understand what’s going on.

    One thing that amuses us is the discrepancy sometimes on The Simpsons between what is said and what is captioned. In many cases, the captioning isn’t quite as good, but on The Simpsons, if there’s a discrepancy, the captioned stuff is usually better.

    In short, I’d be very, very surprised to find that Andrea had seen anything recently that didn’t have captioning available, aside from first-run movies.

  27. Evonne:

    1. Re the ragged magazine article — no, I hadn’t seen it. Thanks for linking it. Yeah, it annoys me when people use a phrase like “fallin on deaf ears” (deaf people are just fine at listening as long as the same information is conveyed to us in an accessible modality!) (Plus it annoys me when I’m doing key word searches because then half the articles that turn up will have nothing to do with the deaf community, they’ll just be articles about stubborn listening-impaired politicans and bureaucrats or whatever!)

    2. Princess Bride: if you mean in the movie theater, *cough cough* — captioned movies in the theater are still rare even today (most theaters don’t even have the proper equipment–even in major CITIES), and were very near to non-existent in the 1980s. I saw maybe all of two captioned movies in the theaters during my entire childhood, one in the 70s the other (Children of a Lesser God) in the 80s, and my family had to drive a good 45 to 60 minutes or so from the suburbs into the city (Boston) both times.

    If you mean on videotape and dvd: yes, it’s captioned (and on dvd it even has an option for Spanish subtitles –cool!). But I would have to watch it again to see if it conveys the lisp because I don’t remember off hand. I might do that, but AFTER I do some more of my homework :-) Whenever I get around to watching it, I’ll try to remember to come back here and report :-)

  28. To refine what Julia said:

    MOST TV programs on MAJOR TV stations are captioned.

    Advertisements and public service announcements are still a mixed bag — some are captioned, some aren’t. (For example, if you’ve ever watched Lifetime, you know that sometimes they have a movie about rape or some other big issue, then at the end the actor or the real woman they depict will come on saying, or so I assume, something like “this is important blah if you need help blah call this number” or whatever it is they say — I never know because that segment is NEVER captioned on some stations even if the movie was!)

    Many smaller, local stations still don’t do as much captioning. I get three major Spanish channels at home — some of those programs are captioned (definitely a lot more than just 5 years ago), but some still aren’t, particularly live news probably because there aren’t enough native Spanish speakers who have the appropriate technical skills to do live captioning. Once or twice, we got a wider range of cable channels on a trial basis including a few dozen extra spanish channels and other (English) smaller/less popular channels, but very little if ANY content on those were captioned.

    Sometimes a TV program or movie will be captioned just fine on one station then, when it goes into syndication, the captions just disappear.

    EXTRA features on DVDs, are almost never captioned :-( … commentaries NEVER are, other extra materials RARELY is.

    Things are better than they used to be. (Captions didn’t exist until 1980, so when I was a little girl in the 70s there was zero. If I wanted to watch TV or the movies, either I had to watch the action and guess at the dialogue or bug my hearing sister or parents to tell me what was going on — assuming that they were necessarily watching. The only exception was the Zoom show, in about 1977, which was open captioned on Thursday nights at 7 pm on PBS, channel 2.) But captions are “universal” only if you stick primarily to the really big stations/movies etc. If you have any interest in smaller stuff, or if you dare have interest in any of the interviews or “behind the scenes” or “deleted scenes” or “outtakes” on dvds, then you’re usually out of luck.

    But it could be worse. AUDIO description services (which blind people depend on to help them understand the VISUAL content) is usually even more rare than captions. It hasn’t caught on to nearly the same extent yet. So if Deaf, deaf, hard of hearing people and people with central auditory processing disabilities are frustrated, consider how people with visual impairments feel. Or consider that most countries outside the US don’t have the levels of captions we do here — rich countries might have nearly (but I think usually not quite) as much; developing countries will usually have zero or near zero.

    (Of course, to put things in perspective, poor people in developing countries don’t have electricity and therefore don’t care — 1.6 billion people in the world still don’t have electricity, and experts project we’ll still have 1.4 billion people without electricity by the year 2030 unless we step up investment in infrastructure in a major way. Though I’m guessing that the 1.1 billion people who still don’t have clean water would rather have that first. But that’s a whole ‘nother issue, and brings us even further afield from the “PDD-NOS” topic we started with than this whole captioning thread does!)

  29. It’s the nature of the blog. But yeah, what I was getting at was not necessarily the availability of captions — I tend to watch movies on DVD with captions myself for a number of reasons — it was more in reference to the nuances of captions. ‘Cause yeah, I’ve noticed that some key elements are left out of lots of shows with captions (and only some detail the extra audio cues like “dog barking in background” or whatever). I’m more interested in how you knew, like, to put that emphasis on the third syllable in “inconCEIVable”. I mean, obviously you may have seen it in text, etc . . . I’m just thinking in terms of, okay, like, when there’s a movie with Spanish language and English subtitles, for example (and btw, nothing irks me more than “dubbed” movies, i.e. with audio tracks of actors speaking in a different language over the original actors), I tend to follow *both* the Spanish and the English — and I pay attention to stuff that may be lost in translation. I also notice that often the English caption will pop up with the punch line of a joke before the actor has actually said it, and it ruins it. I suppose what I’m most interested in is the comprehensiveness — not just comprehensibility — of captioning. I realize that there will always be certain nuances of language that just don’t cut it in the translation, but I’d sure like to see *good* translations more often.

  30. Oh, and andreashettle, when choosing answers to questions of the nature of mine, I welcome you to understand fully that “None of your f*%*ing business” is always an option as well. ; )

  31. Brava, Amanda! Well written, both clear and funny.
    What has always surprised me is that people (incl. diagnosing types) don’t immediately “get” that PDD-NOS is a “wastebasket” dx. I mean, it’s there in the actual *name*! “Not Otherwise Specified”, and in the criteria.
    The Brits seem to use “ASD”, “Autistic Spectrum Disorder” as a catch-all (un-official? At least according to ICD-10, I think) dx, even including in it (sometimes?) Asperger’s and autism, I think. Much better, IMNSHO – incorporates the crucial a-word, and is vague enough, on purpose I would imagine.

  32. As far as I’m aware ASD is not used as a diagnosis, but rather as a convenient way of speaking about a cluster of related diagnoses and for presenting statistics. (Though I should add that I’m in Sweden, not the UK.) The term usually includes all diagnoses with the word autism in them, Asperger’s syndrome, PDD-NOS, Rett’s syndrome and childhood disintegrative disorder. There’s some debate about whether ADHD should be included too.

  33. The NOS -not otherwise specified- is very broad. A mild-to-moderate or moderate-to-severe diagnosis can often be given due to the reaction to a young person’s context (peers, adult teachers, classroom type) rather than the severity of the autism spectrum disorder. Early, improper placement can negatively shape a persons life beyond repair.

  34. I just stumbled upon your site after searching for PDD-NOS in light of my 27 month old son’s diagnosis. I’m still reeling from it, although it’s what I expected, and I am trying to come to grips with my fear of the unknown in his future. Your post made me feel better. Thank you.

  35. Sounds like I should have been PDD-NOS (I fit the Asperger’s criteria except for language delay), but that pediatrician, lacking knowledge of it, gave me a diagnosis of Asperger’s. It never occurred to me before that PDD-NOS covered such a broad variety of symptomology and histories…

  36. My son has just been diagnosed with PDD-NOS. I don’t really care if it’s that or Asperger’s so long as he can get the help that he needs. I’d rather have no diagnosis at all and just address his specific issues, but it seems that schools are dictated by funding sources. I believe that regardless of what criteria you require for any diagnosis, no parent likes to hear there is something “wrong” with their child. As for the debate of PDD-NOS or Autism it’s either tomAto or tOmato. It’s about what happens after the diagnosis.

  37. i need help real bad i have a 4yr old that has pdd nos or autism and he will not eat for me at all we do speech he will not talk we do ot therapy and he has become very social and always happy but the oral issue is bad he has bottle rot and he will drink out of a cup he loves off of a soy based formula and supplements i just did know if any one has went threw this or knows any thing else i might be able to try please email me thanks

  38. i have a littleboy who was diagnosed with pdd nos but shows all the symtoms off autisim he got a pdd nos diagnoies becase this was more notiable at six years of age and was not as easy to diagnose when he was two years old

  39. I think I have PDD-NOS, it would certainly explain alot of things socially and with my repetitive behaviour, I feel quite happy (I’m a good person), I have stumbled quietly through life, I’m now 34 yrs old, and find the world a little overwhelming, I have never made friends with people my own age, I find conversation impossible sometimes painful, I end up just sitting listening. It’s like a blank piece of paper in front of my eyes.
    please email me I’d like to talk to someone

  40. My son was just given a PDD-NOS diagnosis today.
    I have read so much material and done so much research in the last 2 months, I know he has Aspergers.

    It seemed to me that the doctor was reluctant to give him an Aspergers diagnosis because he is still so young (he is 5yrs old) so she just threw him into the PDD category because he isn’t “normal.”

    I also questioned her on whether it made a difference that she was an adult during the evaluation and she didn’t get to do any observation on him with peers. She claimed that any social disabilities that he has would be prominent no matter what the situation. I, however, do not agree. I have seen my son interact with adults with a slight disability, yet when it comes to his peers, that is where is social disabilities lay.

    I am so glad that I found your blog (I found it by doing a search for PDD-NOS.) I will certainly be looking around a little bit more.

  41. I just went to a WECA conference and had a seminar on Autism. The presenter was very good. She had a PHD. She stated the same as you that the diagnosis is hard because of the variety of symptoms. She also said how each case needs to be treated individually. I was unaware until this seminar what PDD-NOS was. So that is how I came to read your info. It really gave me insight into what she said. the presenter wasn’t there to support anything just to tell preschool teachers the signs and symptoms and criteria used to diagnosis. She gave info that was so interesting. How most children were diagnosed at age three – five so people thought it just started. Then they paid more attention and noticed things as early as 18 months. Now they are going back and looking a video a new technology used by most people and can find signs and symptoms way back. She used the same criteria you have shown, but did not think PDD-NOS was used as you imply. I have no opinion on that. She did however say most parents were relieved to know what their chid had rather than give parents the smooth over I do not know speech. Thanks for the great info

  42. The discussion on PDD-NOS was how I found this site. My 5-year-old son’s dx was originally Asperger’s, immediately after turning 4. A new “evaluation” this summer, from a different Dr., produced a dx of PDD-NOS. I’ve been wrestling with the terminology ever since! Thanks so much for all the info & opinions.

    In addition, this whole site has proven to be a helpful resource. I’m so grateful that it’s available!

  43. Just this month, my son’s ped. was asking me some questions at his well-child appt. and mentioned that she was thinking he might be on the autism spectrum…PDD. When he was 2 y.o. his cardiologist asked if he was autistic, because he was rocking (he would rock so violently that he broke 2 glider-rockers and has knocked screws out of his bed/crib, and screws are loose in his wheelchair frequently, too), hand-flapping, clapping his hands, humming, letting his eyes cross in rhythm with his flapping, humming, and rocking. I told him that he does have tendencies. He does spin objects and lines things up, and if they’re not just right, he gets mad. If he’s frustrated with a toy, he cannot tell me what’s going on, he’ll hit, pinch, scratch, etc, to get my attention and to try and “fix” whatever it is. He is very much into movies and objects like small stuffed animals and toy cars that he can hold in his hand and take places with him. He is my little parrot…echoing things that are said near him. He is g-tube fed, he doesn’t like anything in his mouth and we have a huge fight just to brush his teeth, bathe him, brush his hair, hates changing his clothes, etc. He does occasionally toe-walk…he’s getting better with that when he wears his AFOs. So, what do you think? Just by what I’ve mentioned, I know he is in some category, just where is a mystery to me! If you have any thoughts, please let me know!

  44. You missed one other use of PDD-NOS by doctors: “This kid would benefit from therapy but does not meet any diagnostic criteria that would warrant it.” My daughter was evaluated by a developmental pediatrician at 2.5 years old and given a PDD-NOS dx. Although she had significant delays in a number of areas, including social development and expressive speech, she pretty clearly was not ASD (most importantly, she was able to detect and respond to emotional cues from others from an early age — hugging when mommy was sad, for example). The doctor predicted at the eval that she very likely would lose the dx after 6 months of ABA, from which she benefited enormously and, as predicted, has now “lost” the dx. I suppose you could argue that the ABA “fixed” her, but it’s my opinion (and sure, I could be wrong) that her delays stemmed from her low tone (she didn’t walk until she was nearly 3) and she was never “really” ASD. The important BUT is here: she needed the ABA because of her atypical development. Her brain was working so hard on organizing her physical side, that the social/language side didn’t develop appropriately and she needed a push from therapy — ABA. I suspect there may be other kids like her and I wonder the extent to which this skews the stats on ASD dxs. (And also gives false hopes to people who think ASDs can be “cured”.) Just a thought.

  45. Pingback: Tentative Diagnosis « Journey to the Center of Sylvie’s Brain

  46. Pingback: Autism, Asperger’s, PDD-NOS and Their (Lack of) Distinction « Astrid's Journal

  47. MY son has PDD/NOS I feel lost reading all I can. I am trying but not sure of the next step. he was first diagnosed with aspergers now the other and the public school system has failed us he is 10 soon to be 11. I have home schooled him the past year. He has been to 8 different schools because they have transferred him back and forth to another and another saying this is better and this other will be a better fit. I have gotten tired of the treatment of back and forth and shuffling of him. Now I am trying to get a IEP so he can go to a Super Learning Center I ave choose that only works and teaches children with PDD/NOS. It is hard getting the public school system to get it done I call everyday. I need advice legally any advice would be nice. He has had a IEP all his years in public school.

  48. Pingback: COS’E’ IL DISTURBO PERVASIVO DELLO SVILUPPO NON ALTRIMENTI SPECIFICATO? « autismo incazziamoci

  49. Pingback: Autismo: Che cos´è il PDD-NOS? (DGS-NAS Disturbo Generalizzato dello Sviluppo Non Altrimenti Specificato). - Biosfera onlus

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