Can autism get lesser?
Now there's a trend for parents of kids who are just intellectually impaired, or just "cerebral palsy" (and other disabilities) to seek out or even demand a spectrum dx.
Yes, but I think that would fit under the last one I mentioned:
4. Over-diagnosis. Some people have suggested that, because of the increasing popularity of Asperger's as a diagnostic category, more people have been diagnosed with the condition than is actually justified from their symptoms.
Not exactly, you are describing over-diagnosis. I'm trying to point out that in the past there was a lot of under-diagnosis in the sense that the diagnosis could have been made (a clinician could have seen autism) or was made (a clinician diagnosed autism) but that the parents said, "forget it, my kid ain't autistic". And that's the end of the story. So that even in studying health records in the past you might read the record of a kid who was autistic and the word autism would be nowhere in the record, and if you asked the person's siblings, "was your brother autistic?". They'd say "No." Because the parents would reject the label and not use it. They'd say, "ret*d" or "learning disabled" or "speech delayed" or "just had some weird thing he sort of grew out of...."
And back then if researchers were enrolling kids in a study to find out if they were autistic, parents would avoid cooperating, for instance, and work to keep their kid from being enrolled in such a study.
After all autism was a life sentence and caused by the fact that the mother had an unconscious desire to kill her child.
![Shocked 8O](./images/smilies/icon_eek.gif)
The other problem, I think you touched on was diagnostic shift. I have a friend whose older brother (that brother is younger than me) was dx'd as having childhood schizophrenia in kindergarten. He was autistic. Mom rejected the childhood sz diagnosis and that was that. The kid sort of grew out of the more extreme symptoms and he's just a very odd undiagnosed ASD adult now, married to a woman from another culture and they have two apparently NT daughters. Go figure.
I think this is a better one, though it covers less "ground".
www.autcom.org/pdf/Epidemic.pdf
http://unstrange.com/dsm1.html
On the "over DX" v "under DX" thing, Diva - I think both arguments are valid. After all, it is true that no one wanted an Autism DX in the deep dark past because it would have meant a near certain referral to an asylum or something similar. On the other hand as the Spectrum was expanded via the DSM things changed to the extent that there was an over DX.
The point is the combination of both is what has created the illusion of the so-called epidemic - like it has come from nowhere almost.
autism_diva, I liked in one of those (the .pdf one I think) that states the current change in thought for [classic] autism and mental retardation, and how one can be classically autistic and still have normal intelligence, but still don't have Asperger's/PDD-NOS.
exist among people at every level of measured intelligence
(Baird et al., 2000),...
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Okay, you are referering to an avoidance of stigma and the Freudian concept of autism. That makes sense.
I wish my parents had done that. Unfortunately, my mother was always very deferent towards authority,
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The point is the combination of both is what has created the illusion of the so-called epidemic - like it has come from nowhere almost.
I don't doubt the over-dx part at all. I was just pointing out that the US went from extreme under dxing to probably serious over-dxing in 40 years. Dr. Ozonoff at the MIND said she had a mom pressuring her to give her daughter an AS dx when her daughter really fit the bipolar dx. Asperger's was seen as synonymous with "genius". You can't say that about many other "disorders".
By the way, another thing is that a lot of people are unaware of the actual history of the autism diagnosis from Kanner's day onward.
Kanner's autism was originally something that was supposed to be applied primarily to children who would today be called high-functioning: They had (or could be presumed to have) normal IQ scores, they could generally speak (and even could speak quite early at times, like some of Kanner's original patients), and other such things. Kanner's original patients would today, if adhering to the strict criteria for these things, all be considered high-functioning autistic or even AS.
There were also some inaccurate presumptions made in Kanner's criteria and descriptions of course. I have read his original paper, unlike apparently a lot of autism professionals today. He describes people who even from his descriptions were clearly interacting with people, as non-interactive because their interactions were not typical. He actually believed that autistic people rejected everything outside themselves, and that if they had reflux then even that was a rejection of things outside themselves. He conveniently ignored, of course, all the things and people they did not reject in any sense. He also described one girl as able to comprehend instructions without hearing them, which I think he meant without looking at the person who was saying them.
Anyway, later on, a number of people were added to the description of autism who were what now would be called "lower functioning". This was talked about in one paper as "autistic PDD" rather than "Kanner's" (and the paper regarded "Kanner's" as meaning "relatively high functioning"). Also, what is now called regressive autism was added into the description of autism. (Previously, "regressive autism" was considered by some people, such as Frances Tustin, to a later-onset form of "psychosis" and actually being "childhood schizophrenia" as opposed to "autism proper" which was obvious from birth and usually did not involve additional "regressions".)
So this meant that now there were a lot of people who Kanner would not have considered to be autistic, and they actually started forming more and more of the definition of autism. (I don't see anything as wrong with this, I'm just reporting the sequence of events here.) There are actual descriptions of the "broadening of the concept of autism to include people with mental retardation" (although many of the people that presumption was made about, did not actually fit that diagnosis) from that time period, a very different discussion than the current discussions about "broadening".
So by 1980, which was when autism was added into the DSM (many people assume it was a lot earlier than that -- prior to that it was actually considered either a form of childhood schizophrenia or not mentioned at all), the criteria were pretty extreme. And they also included one criterion that is inaccurate for just about all autistic people including those regarded as severely autistic today. (Which is total lack of contact with people in any form, basically. That just doesn't exist, or doesn't often exist, in autistic people.)
Ever since 1980, the criteria have been mostly broadening, so that they would, for instance, include people like Kanner's original patients. This is not over-diagnosis, but an attempt to encompass both all the new people who were added in after Kanner's original ideas about autism, and the people that both Kanner and Asperger originally discussed (who had been dropped out of the definition of autism altogether somewhere in the middle period). So instead of just an addition to the "original" idea of autism, it was more like an attempt to re-include the people originally studied, most of whom would have been dropped out of the definition somewhere in the middle period. While still also including the people added in in the middle period.
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The point is the combination of both is what has created the illusion of the so-called epidemic - like it has come from nowhere almost.
I don't doubt the over-dx part at all. I was just pointing out that the US went from extreme under dxing to probably serious over-dxing in 40 years. Dr. Ozonoff at the MIND said she had a mom pressuring her to give her daughter an AS dx when her daughter really fit the bipolar dx. Asperger's was seen as synonymous with "genius". You can't say that about many other "disorders".
That's why - in my latest update and rejig to the Aspergers part of my website Wiki - I took out the word "disorder" from my own words, and replaced it with "condition". And you're right - that note about genius's was exactly why an AS DX became something of a fashion plate. ADHD suffered a similar explosion for a different reason (parents wanted to pass the buck to something to excuse their bad parenting). AS also got a boost in DX for a similar reason on top of the genius factot - to explain poor social skills which could also have been the result of bad parenting.
It's one big mess - and the mercury militia love it because it plays right into their hands!
Kanner's autism was originally something that was supposed to be applied primarily to children who would today be called high-functioning: They had (or could be presumed to have) normal IQ scores, they could generally speak (and even could speak quite early at times, like some of Kanner's original patients), and other such things. Kanner's original patients would today, if adhering to the strict criteria for these things, all be considered high-functioning autistic or even AS.
There were also some inaccurate presumptions made in Kanner's criteria and descriptions of course. I have read his original paper, unlike apparently a lot of autism professionals today. He describes people who even from his descriptions were clearly interacting with people, as non-interactive because their interactions were not typical. He actually believed that autistic people rejected everything outside themselves, and that if they had reflux then even that was a rejection of things outside themselves. He conveniently ignored, of course, all the things and people they did not reject in any sense. He also described one girl as able to comprehend instructions without hearing them, which I think he meant without looking at the person who was saying them.
Anyway, later on, a number of people were added to the description of autism who were what now would be called "lower functioning". This was talked about in one paper as "autistic PDD" rather than "Kanner's" (and the paper regarded "Kanner's" as meaning "relatively high functioning"). Also, what is now called regressive autism was added into the description of autism. (Previously, "regressive autism" was considered by some people, such as Frances Tustin, to a later-onset form of "psychosis" and actually being "childhood schizophrenia" as opposed to "autism proper" which was obvious from birth and usually did not involve additional "regressions".)
So this meant that now there were a lot of people who Kanner would not have considered to be autistic, and they actually started forming more and more of the definition of autism. (I don't see anything as wrong with this, I'm just reporting the sequence of events here.) There are actual descriptions of the "broadening of the concept of autism to include people with mental retardation" (although many of the people that presumption was made about, did not actually fit that diagnosis) from that time period, a very different discussion than the current discussions about "broadening".
So by 1980, which was when autism was added into the DSM (many people assume it was a lot earlier than that -- prior to that it was actually considered either a form of childhood schizophrenia or not mentioned at all), the criteria were pretty extreme. And they also included one criterion that is inaccurate for just about all autistic people including those regarded as severely autistic today. (Which is total lack of contact with people in any form, basically. That just doesn't exist, or doesn't often exist, in autistic people.)
Ever since 1980, the criteria have been mostly broadening, so that they would, for instance, include people like Kanner's original patients. This is not over-diagnosis, but an attempt to encompass both all the new people who were added in after Kanner's original ideas about autism, and the people that both Kanner and Asperger originally discussed (who had been dropped out of the definition of autism altogether somewhere in the middle period). So instead of just an addition to the "original" idea of autism, it was more like an attempt to re-include the people originally studied, most of whom would have been dropped out of the definition somewhere in the middle period. While still also including the people added in in the middle period.
Thank you for describing this. I just sort of only recently got my head wrapped around the idea that originally "Kanners" precluded those with "retardation".
I suppose when "Rain Man" was made the main definition of "autism" included "retardation" or people who looked like they didn't comprehend much... because an MD calls Raymond, "very high functiong"... yet today he's used as a prototype of "Kanners" or "low functioning/low IQ but with savant skills".
It's hard to describe what a mess "autism" is in. I think almost no two professionals define it the same way, especially if they are in different fields and not colleagues of each other.
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What is the URL to your wiki?
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The point is the combination of both is what has created the illusion of the so-called epidemic - like it has come from nowhere almost.
I don't doubt the over-dx part at all. I was just pointing out that the US went from extreme under dxing to probably serious over-dxing in 40 years. Dr. Ozonoff at the MIND said she had a mom pressuring her to give her daughter an AS dx when her daughter really fit the bipolar dx. Asperger's was seen as synonymous with "genius". You can't say that about many other "disorders".
That's why - in my latest update and rejig to the Aspergers part of my website Wiki - I took out the word "disorder" from my own words, and replaced it with "condition". And you're right - that note about genius's was exactly why an AS DX became something of a fashion plate. ADHD suffered a similar explosion for a different reason (parents wanted to pass the buck to something to excuse their bad parenting). AS also got a boost in DX for a similar reason on top of the genius factot - to explain poor social skills which could also have been the result of bad parenting.
It's one big mess - and the mercury militia love it because it plays right into their hands!
One more thing that can add to the "inflation" of "autism" is that it's really not that easy to reliably predict if a kid who seems autistic at age 12 months will still be autistic at age 3 years. If you label all the kids who don't respond to their name at 12 months as "likely autistic" you'll probably capture most of the autistics but you'll have a bunch of false positives, too.
Then you subject the poor babies to a gajilion agressive interventions (including chelation
![Shocked 8O](./images/smilies/icon_eek.gif)
![Confused :?](./images/smilies/icon_confused.gif)
Then you subject the poor babies to a gajilion agressive interventions (including chelation
![Shocked 8O](./images/smilies/icon_eek.gif)
![Confused :?](./images/smilies/icon_confused.gif)
Can you just look at the DAN! doctors and other biomed as the sole proprieters of potential disinformation? Don't you have an entire fledgling industry of providers of 'early intervention' services for these kids?
Being a parent of two AS children discovered early, I would like to know IF my money (BOTH biomed and to a much greater $ amount 'traditional' therapies) is being spent wisely. If my 3 year old was just going to 'snap out of it' from a perspective of communication, behaviors and socialization, then I've just wasted a whole bunch of money of Speech, ABA, OT as well as a lot of worry thinking my child would not be able to function in this world.
When is someone going to tell me whether I'm doing the right (or the wrong) thing pushing her in certain directions? It may not be pushed as a 'cure', but therapies and special education are certainly intimating that...especially for young kids. Where are the studies to say whether they are right or wrong in these pursuits?
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Asperger's is a neurological difference, a neurodiversity, and there is no solid, empirical evidence that it can be altered through diets or massages. When I say "empirical evidence," I am speaking here as an academic, i.e., articles published in peer-reviewed journals.
I don't doubt the sincerity of many of the people offering alleged "cures" for ASDs. I also do not doubt the sincerity of some of the most fanatical members of religious groups I have studied as a sociologist of religion (the ones who are absolutely, positively certain they are right). However, as the late Garner Ted Armstrong used to say (of course, excluding himself), "There are many sincere people who are sincerely wrong."
It is generally a good idea to ignore testimonials. Promoters of cures always want people to read these stories. They know that "the human touch" appeals to a lot of people and can easily, to the average nonscientist (and concerned parent), compensate for a lack of research data.
All that matters is published research in academic journals. IMO, everything else can be safely disregarded. Once that is done, none of the nonscientific "cures" amount to much of anything.
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Livsparents, the early intervention team that worked with my son had limited success. The OP and DT was essentially useless. The speech therapist did have some success and coaxed out his first words. She used a combination of picture and sign language helped him visualize what the words she was trying to get him to say. We learned from that and continued using her methods at home. The OT and DT we could have done ourselves. He enjoyed their company and the fact that they brought a bag of toys with them, but I saw no progress from the things they did with him. Some of the things they did he actually disliked. Early intervention fas free so we were not out of any money for it. Knowing what we know now we could have done all of that stuff ourselves. You know a lot LP do you really need to pay for it. Even ABA, You could do that yourself right? I don't know what the DAN "doctors" are doing for you aside from the MB12 injections, but you do those yourself right? Do you really need to pay a DAN? How much progress have you seen from your interventions? Can you definitely attribut it to your interventions or is your 3 year old just growing and learning. Our son has made huge strides in 1 year. He has gone from not speaking, to saying all kinds of things. I call it Spongebob therapy. I still am going to get him some more speech therapy though. It seems to help a little.
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Can you just look at the DAN! doctors and other biomed as the sole proprieters of potential disinformation? Don't you have an entire fledgling industry of providers of 'early intervention' services for these kids?
Being a parent of two AS children discovered early, I would like to know IF my money (BOTH biomed and to a much greater $ amount 'traditional' therapies) is being spent wisely. If my 3 year old was just going to 'snap out of it' from a perspective of communication, behaviors and socialization, then I've just wasted a whole bunch of money of Speech, ABA, OT as well as a lot of worry thinking my child would not be able to function in this world.
When is someone going to tell me whether I'm doing the right (or the wrong) thing pushing her in certain directions? It may not be pushed as a 'cure', but therapies and special education are certainly intimating that especially for young kids. Where are the studies to say whether they are right or wrong in these pursuits?
Good questions. Right now anyone offering a cure just wants their cure du jour to be "bought" in the sense of believed and then funded extremely generously by the Gov't.
None of the providers really care about evidence, unless it's evidence that knocks their competitor(s) back a notch.
The ABA providers get ugly, believe me, I started out tangling with ABA therapists and then ran into the mercury malicia, so I was practiced in the art of being accused of having nothing but bad motivations.
With the ABA providers and believers I was an inhuman and stupid person who could not possibly be the parent of an autistic child.
With the mercury malicia and biomeddlers I am more simply, a well paid pharma shill and ... probably a member of the illuminati, which is almost the same thing as a pharma shill anyway... and I want to see babies damaged with vaccines.
![Very Happy :D](./images/smilies/icon_biggrin.gif)
With there being so many "autisms", you know, I don't think anyone would be able to tell you anything about the future of your child and what interventions will work. All I can tell you is to minimize wasting money on stuff that sounds too good to be true, and maximize your child's potential by minimizing unnecessary (took me 5 tries to get that spelled right) stressors and by maximizing acceptance and love (which I personally believe you personally are already doing).
No one has a crystal ball. Typical kids don't come with a crystal ball either. My NT kid had some odd developmental hiccups, but they were so minor, I can see them in retrospect as being odd. I only had an older developmentally delayed kid and my own childhood, etc, to compare that one, too.
Had I been hyperfocused on every odd thing about that kid I would have freaked out, no doubt, but they were things that people of my generation tended not to freak about... and that people of my parents generation really would not have freaked out about ever. If the parent freaked about them, the parent would look like a neurotic nutcase by his or her peers. Those were the good old days.
![Very Happy :D](./images/smilies/icon_biggrin.gif)
I am frightened by the trend toward earlier and earlier diagnosis and more and more aggressive "therapies" and "treatments".
Do you know there is a field of study of "fetal behavior"? How long before people try to dose fetuses with DAN! protocol dujour drugs? They are already chelating babies (at least according to the autism mercury Yayhoo group they are). I mean under a year old BABIES!! ! It's insane, with apologies to people with mental illness everywhere who would not do this.
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