coComments related to Ballastexistenz

My son has just been diagnosed

2008-10-07T19:53:22.724+02:00

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.

Sounds like I should have been

2008-06-29T05:28:47.711+02:00

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…

I just stumbled upon your site

2008-06-17T08:57:21.534+02:00

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.

The NOS -not otherwise specifi

2008-06-05T12:25:55.357+02:00

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.

As far as I’m aware ASD is not

2008-05-24T15:54:29.180+02:00

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.

Brava, Amanda! Well written, b

2008-05-12T19:23:03.003+02:00

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.

Oh, and andreashettle, when ch

2008-04-30T22:51:36.826+02:00

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. ; )

It’s the nature of the blog. B

2008-04-19T02:20:10.649+02:00

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.

To refine what Julia said:MOST

2008-04-07T05:48:44.472+02:00

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!)

Evonne:1. Re the ragged magazi

2008-03-26T08:17:18.295+01:00

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 :-)

Evonne,Pretty much everything

2008-03-14T11:45:52.118+01:00

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.

PDD-NOS stands for Pervasive D

2008-03-02T15:14:25.941+01:00

PDD-NOS stands for Pervasive Developmental Disorder Not Otherwise Specified and is a real grey area for me as someone who is new to the world of autism spectrum disorders. I don’t read the newspaper in the morning, instead I read blogs. One of the blogs that I regularly read is Ballastexistenz over on the autistics.org website. Yesterday morning she published a great post entitled “What PDD-NOS officially means.” It is a great post and I wanted to share it with the readers of my blog.

PDD-NOS seems to be the autism

2008-02-19T18:42:59.764+01:00

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.

Oh, and speaking of The Prince

2008-02-07T22:11:33.587+01:00

Oh, and speaking of The Princess Bride (and then I’ll shut up; I’m afraid my nerdiness is leaking out), in a roundabout and full-circle kinda way, andreashettle, have you seen this?http://www.raggededgemagazine.com/blogs/edgecentric/metaphors_for_bad/001078.html

I was actually wondering about

2008-01-27T01:40:07.410+01:00

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?

That’s inconthievable!

2008-01-15T05:08:41.233+01:00

That’s inconthievable!

Ooops, you’re right, it IS “in

2008-01-03T08:37:15.056+01:00

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.

my parents once had a friend w

2007-12-22T12:05:48.879+01:00

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 kind of AIDS is there?” they asked.

Re: the wheelchair thing, I’ve

2007-12-10T15:34:22.702+01:00

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.

I thought it was “inconceivabl

2007-11-28T19:02:56.525+01:00

I thought it was “inconceivable”.

Re, avoiding autistic labels j

2007-11-16T22:31:30.348+01:00

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?”)

Evonne:Oops, so eye kan’t spel

2007-11-05T02:00:04.171+01:00

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 :-)

DD-NOS (dissociative disorder

2007-10-24T06:28:37.994+02:00

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.

Andreashettle, I can’t help bu

2007-10-12T09:57:11.817+02:00

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

very interesting, thanks. 2 of

2007-09-30T13:25:45.640+02:00

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.

Charles EinsteinThis is

2007-09-18T16:54:19.463+02:00

Charles EinsteinThis 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).

Charles EinsteinIn rela

2007-09-06T20:22:53.286+02:00

Charles EinsteinIn 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.

Very interesting. Bud’s “offi

2007-08-25T23:51:27.109+02:00

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.

it really irks me that Stephen

2007-08-14T03:20:00.932+02:00

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.”

This particular paragraph seem

2007-08-02T06:48:34.755+02:00

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.

Thank you. By the way, the abo

2007-07-21T10:17:08.578+02:00

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).

I have dealt with people’s fli

2007-07-09T13:45:42.401+02:00

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.

I don’t live in an institution

2007-06-27T17:14:16.224+02:00

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.

I am a writer on civilization

2007-06-15T20:42:50.047+02:00

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

lordalfredhenry: PDD-NOS and

2007-06-04T00:11:23.870+02:00

lordalfredhenry: PDD-NOS and atypical autism are roughly synonymous. My written diagnosis when my diagnosis was PDD-NOS was “PDD-NOS (atypical autism)”.

Amanda Baggs at Ballastexisten

2007-05-23T03:39:57.693+02:00

Amanda Baggs at Ballastexistenz just put a post that lays out what PDD-NOS officially means in careful detail. Baggs notes how “indistinct” PDD-NOS is as a term, and—in addition to reviewing evolving DSM criteria—lists how the term gets used as a kind of catch-all diagnosis if a “person does not fit the doctor’s stereotype of autism even though they might meet official criteria for autism or Asperger,” and as a “milder” diagnosis than so-called “full-blown autism.” She ends her post by noting: 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.

er, I don’t know how my brain

2007-05-11T07:08:31.516+02:00

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.

I’d like to see an explanation

2007-04-29T10:37:05.339+02:00

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.

I guess my thoughts of PDD-NOS

2007-04-17T14:05:39.162+02:00

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 :)

Thanks for explaining this. Th

2007-04-05T17:33:52.985+02:00

Thanks for explaining this. The whole definitions can be very confusing a lot of the time, to me at least.

Brava, Amanda! Well written, b

2007-07-15T22:59:09.973+02:00

I have dealt with people’s fli

2007-04-05T19:57:37.456+02:00

My son has just been diagnosed

2008-10-07T17:48:39.101+02:00

Sounds like I should have been

2008-06-29T05:28:47.711+02:00

I just stumbled upon your site

2008-06-17T08:57:21.534+02:00

The NOS -not otherwise specifi

2008-06-05T12:25:55.357+02:00

As far as I’m aware ASD is not

2008-05-24T15:54:29.180+02:00

Brava, Amanda! Well written, b

2008-05-12T19:23:03.003+02:00

Oh, and andreashettle, when ch

2008-04-30T22:51:36.826+02:00

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. ; )

It’s the nature of the blog. B

2008-04-19T02:20:10.649+02:00