A few good friends of mine have high level functioning Asp kids. One mother is also most likely Asp as well although it was not being diagnosed per se at that time in any capacity.

I don't believe there are any studies that have looked at this specifically. Do you have any links to anyone who has studied the rate and diagnosis or misdiagnosis of ADHD, Developmentally delayed, vs autism of any kind?

I do not have any online links, no. What I have is this:

No way to know how many are misdiagnosed, but if only 1 in 166 is being given the actual autism label, when that many are being diagnosed with other things, I'd say it's pretty likely the autistic kids actually have autism.



You get one guess where I copied those quotes from.

No, really? :eek:

If there is no significant language delay, it is not autism, by medical definition. Your daughter may end up with a diagnosis of Asperger's, ADHD, or any number of other diagnoses which are not autism, and they may rightly apply. If she ends up with a diagnosis of pure autism, then you must be correct, the diagnosis is being watered-down by some inexperienced medical professionals, because she does not have autism.

The fact remains that I have sat in a conference room with 50 other Pre-K autistic children all from my school district, all of whom had serious and obvious developmental delays, most of whom were completely nonverbal. Given the size of my school district, that works out to slightly less than the national rate of 1 in 150 (1 in 90 boys, because boys are affected 4 times more often than girls,) because of course this was a PPCD meeting and it didn't include any of the older autistic kids already in the system. If you could have sat in that room with me, you would understand the despair. None of these children could have slipped through the cracks in years past, ever. There are always going to be a handful of borderline cases that could persevere and cope on their own, but they are insignificant in the face of the total numbers. At any rate, I'm done discussing the topic with you, Tiki. I get enough of the "they'll grow out of it" head-in-the-sand bullshit from my older relatives, I don't need to subject myself to more of it here.

Delays in communication and social interaction are part of the diagnosis, not just language development.

Language delay is subjective for each child, based on where the child *should* be for their abilities. That is my point; that is why very intelligent, high-functioning autistic children have great difficulty being correctly diagnosed, and why there is reason to believe that in the past many did not get diagnosed with anything at all. Aspergers is included in the overall statistical rise in autism figures, as it is a form of autism.

The school language development specialist said there is no significant delay compared to statistics for her age group (there is a slight delay compared to average, but not enough to be considered pathological) but when assessed as an individual by the neurology center and by our pediatrician, she was found to have significant delays compared to where she should be based on her IQ. She was performing at an average for the general population, but was delayed for where she, as an individual should be. J, my friend's child, had the same difficulty with getting the school to recommend testing... because his extremely high intelligence was masking his disorder, he was able to function at a reasonable average despite the fact that without the disorder he would have been performing far beyond his peers in all areas, including communication.

This is why there is a disconnect between what schools will perceive as an indication of a disorder, and what specialists, treating each child as an individual, will perceive as an indication of a disorder. The schools are basing their expectations on an average, and any child who meets that average is assumed to have nothing wrong with them.

There is a question about whether high-functioning autism can really be distinguished as a separate disorder from Asperger's, because, as a spectrum disorder, there is no clear line at the high-functioning end that divides the two. J, for instance, has a diagnosis of autism rather than Aspergers largely because he exhibits classic hand-flapping, pacing, and aversion to touch. He is also unbelievably articulate for a ten-year-old, though there are long pauses in his conversation.

You might find some of these links interesting:
http://www.autism-help.org/points-autism-epidemic.htm
http://ww1.cpa-apc.org:8080/Publicat...r/tidmarsh.asp
http://www.nas.org.uk/nas/jsp/polopo...?d=1049&a=3337
http://www.wisegeek.com/what-are-sym...vel-autism.htm
http://www.apa.org/monitor/dec04/definition.html
http://www.med.yale.edu/chldstdy/autism/aspergers.html
http://www.autism-help.org/

Have you gotten your daily dose of personal pot-shots in today?

Yes, because if there's one thing I haven't done, it's research on the internet. :rolleyes:

Some of your statements indicated to me that your understanding of the autism diagnosis was incomplete, so I thought I'd try to be helpful by providing more information. Sorry about that.

Oh, come on...

I know. Posting informative links that reinforce what I'm trying to convey about autism diagnosis was bad, wasn't it? My mistake.

I think it was the part where you tried talking down to someone with superior knowledge that got you in trouble.

oh no you di'n't!

Cite, please.

She has a diagnosed child in her home. That trumps web searches. Based of previous discussions she knows the disability, Tiki was taking a potshot because clod didn't cut and paste the entire DSMIV.

Cite your assertion of superior / inferior knowledge, please. How do you know?

Clod lives with the disability. She has immersed herself completely in it. I've been away a while, maybe I missed the part where Tiki actually has any training or background in this at all. I was getting chippy because as someone who is degreed and works in the field, I work with parents of special needs kids who get talked down to constantly by folks who should have a little empathy, but instead accuse them of bad parenting. (this is all apart from the vaccine bit where Tiki seems to know a fair amount)

It's a bit like people without kids telling you what you're doing wrong with your kids is what you mean right Griff?

Spot on Ali.

Tiki, I don't know if you've read the thread or not, but have a glance through this one if you have a half hour to spare. It might give you a deeper understanding of what people are trying to tell you.

I'm not trying to jump on you. I understand why you're saying the things you are and I agree with some of it, but honestly, if I were in Clods shoes, I'd find some of the suggestions you've made pretty hurtful. I'm sure you haven't meant it that way, but that's how it looks. Maybe I'm wrong about Clod's feelings, but she has a massive burden to bear at the moment, and I think you're being just a little bit inconsiderate. Of course, you can't be expected to know everything about everyone here because you're fairly new, so I just thought it might be helpful for you to know.

Have a blessed day. :)

What previous discussions? Am I supposed to be automagically up to date on every conversation ever had on this forum?

And the fact that Clod has an autistic kid and has researched autism as it related to her family doesn't, actually, have a lot of bearing on whether she's research autism as it relates to MY family. If we are dealing with two different points on the spectrum, why would she have read up on my end of the spectrum? I certainly haven't read up on hers.

My personal experience is four years of being very close (daily caregiver, frequent overnights & weekends) with one now-ten-year-old high-functioning autistic boy who was not diagnosed for several years because the "experts" in the school refused to believe that a child could be autistic and yet be as functional as J is, one older sister with recently-diagnosed Aspergers, and one six-year-old daughter with a PDD which has not yet been pinned down. Of course, while caring for J, and during his diagnosis, I have done a lot of research on high-functioning autism.

You can scream that I'm being condescending for bringing up my research and my personal opinion, or that I should just shut up because Clod knows more because one of her kids is autistic, but frankly, none of that makes any sense.

I know what I've researched, and the lines between HFA and Asperger's are not very clearly defined, and there is additional complication that very intelligent children, like J, function well enough that sometimes they are not recognized by educators as having a problem, even though once in the hands of specialists they are easily diagnosed.

Clod was trying to tell me that because the language development specialist at my daughter's school said that she was within averages for linguistic development, therefore she is by definition not autistic. She also said that something seemed wrong, and referred us to a neurologist. Both the pediatrician and the neurologists say she definitely has a pervasive developmental delay despite testing within average. It will take more testing to figure out what form, exactly, the PDD is in.

I clearly am not doing a very good job of explaining this, but some of the links I posted did a better job. Some children evade diagnosis because their extreme intelligence causes them to appear not to have a delay, when in fact they do.

There is also something distinctly odd about her father, who is an extraordinarily brilliant programmer, a former award-winning competetive jazz pianist, and a true musical savant who can play several instruments, and hear a song once and then play it perfectly... however, his ability to relate to other people is minimal, he has very little empathy, and his "life skills" kind of make me fear for his ability to make it on his own. So who knows. Maybe it's some inheritable thing.

It seems like the only thing we are arguing here is whether some people with autism have in the past evaded diagnosis. I have posted my reading and my experiences which explain why I am sure they have. Clodfobble disagrees, but instead of posting an actual argument why, I'm getting "she knows better than you, so shut up".

How does that help anything, or anyone?

Thanks for linking me to the thread, Ali.

Can I ask what suggestions I've made that are hurtful? All I'm trying to convey is that I find it very easy, from my experience, research, and observations, to see why and how some autistic children may not have been diagnosed in years passed, but similar children are being diagnosed now, because of higher awareness of autism and the ways it can be identified in high-intelligence, high-functioning autistic children... children who are still struggling, but have not historically gotten the recognition or help they need.

I am not saying anything negative about Clodfobble's parenting. This is purely about why I think better diagnosing is adding to the increased incidence of autism. I think it's also important to keep in mind that autism as a diagnosis didn't exist at all until the 1940's, and until the 1960's it was usually diagnosed as schizophrenia! So of course I think recognition rates and correct diagnoses are higher now.

No problem. Can I give you one more little tiny bit of advice?

Sure.

It is, in fact, demonstrably genetic. Siblings of autistic children have a 2-8% chance of being autistic, somewhere between 50 to 200 times the rate of the general population. But the debate rages over whether it is purely genetic, or whether it is the susceptibility which is genetic, and that without the environmental triggers it would remain dormant, so to speak. (As a comparison, diabetes is also known to be genetic, but the rate of diabetes is much higher today than it used to be because of environmental triggers setting off the disease, like poor diet and lack of exercise.) If one acknowledges that the actual rate of autism is rising, mathematically speaking they must acknowledge that there is an environmental factor, because there is no such thing as a genetic epidemic. This is why many institutions are desperate to prove there are not actually more cases of autism now than there used to be, because if there are, it means there's a cause.


It's a question of overall prevalence. No doubt some people with autism have escaped diagnosis in the past, just as some do today, and I acknowledged that earlier. But it is impossible that all of the people currently diagnosed today would have escaped diagnosis in the past, because there are just too many of them. Far, far too many of them. I have posted my reading on the subject repeatedly--which Undertoad has also agreed to read, as an objective non-parent, and let us know what he thinks--as well as my own personal experience: as I said, I have personally sat in a room full of local autistic children who are not at a functioning level. They are not the handful of hyper-intelligent ones who manage to get by in school for a few years, they are the non-communicative, self-injurious, classically autistic ones, all diagnosed before the age of three, and they all live within my school district. This number of them simply could not have abounded in the past like they do now. These children would have been diagnosed. There are more cases today than there were in the past, and what's more, the rate appears to be accelerating.

OK, well I'll try and be as gentle as I can with it because I don't want you to feel persecuted in any way. In fact, I hope you feel welcome here and enjoy the community because it has a lot to offer, and there are some amazing people here, which leads me to my point. Because of the unique nature of this forum, a lot of people have been here for many many years. This of course you already know. There are always going to be disputes between long standing members, and also between newer members. That's always been part of the allure for me personally. That people here can discuss an issue and have a differing view, but not resort to personal attacks (in general).

The problem you have as a new poster is not knowing the history of the older members, and I think that some of the older members could benefit from remembering that too. It's not always easy to find your place here. God knows it's taken me some time, and I've definitely had my ups and downs, with some of the same people you're currently at logger heads with, but the thing that is best to keep in mind is that the older members probably aren't going to go away or change for your benefit, and I'd say most of the forum wouldn't want them to. What I'm getting at is that you need to try and find the positive things, even about the people that annoy you, or you'll have a very bad time here, and none of us wants to see that happen. We'd all love to see you have a positive experience here, but it doesn't seem like that's what you're having lately.

The best advice I have for you, and that which I've learned from personal experience, is that the status quo is not going to change for your benefit no matter how much you fight for it. It might sound harsh, but unless you can find a way to reconcile yourself to those you don't particularly like or find amusing even, you're not going to have a very good time here, and I'd ask why you'd bother if that is the case.

Just try and be a bit more gentle on yourself and on others. We all want to like you, so why not let us?

I appreciate the advice, but I'd have a lot less fun if I was just lurking around quietly, because 90% of the time this forum is dead boring for me. I hope I'm not unforgivably insulting anyone by saying that, but most forums, without interesting topics, lively debate, and a bit of controversy, become basically group Livejournals. I think there are interesting people here, and I enjoy rousing them a bit and challenging them to show off how interesting they are.

Until I can get them to talk, I don't know.

I've been here a few months and I'm never going to find my place here by lurking. If I tried, I would probably just get bored reading about what a bunch of strangers had for lunch, and drift away. I could certainly do that if everyone still finds my presence unwelcome in another few months, but it's just as likely that you will have gotten used to me, I will have gotten used to you, I will have found a place, and everything will be just fine.

I don't think suppressing my natural personality is going to work very well. I went through a very abrasive phase for several months after my husband left, but... this *is* the softer version of me. :(

I don't want anyone else to go away, either, but if people are going to poke at me for fun, I'm going to do my level best to make it not fun for them.

Tiki, you just basically said that you like the arguments and if there are none then it's boring.

If that's the case, then don't take offence when people get personal.

Sure a bit of drama every now and then makes things a bit more lively, but not every single topic you choose to discuss surely?

eta: There are always going to be shitstirers who really have nothing more to contribute than smart arse remarks. Why bother with them? It only makes it unpleasant for everyone if you lower yourself that far.

Um, that's not actually what I said. At all. :( I said "interesting topics, lively debate, and a bit of controversy". That doesn't have to include ad-hominem and namecalling.

Well, I submit to you that there are plenty of "interesting topics, lively debate, and a bit of controversy" around here, so I'm not really sure where you're coming from. Perhaps you have a different definition of what those things are which would explain why you don't understand how you're rubbing people up the wrong way around here.

You're talking to real people who, if you choose to stay here, you'll probably end up hoping are on your side at some stage.

Anyway, that's it for me. I'm not going to lecture you any more. I was just trying to help.

I have to confess that I probably do define those things a bit differently... I stay out of the politics threads for the most part, so in the last three months almost all of the posting activity I've seen has been of the "What I'm eating today" and "word association" variety. Silly games, and blog-type posts. Not very much lively discussion or debate. Maybe it's all in the political threads, but I have little interest in politics.

Here's a sample of the first page of threads with unread posts:


On Tour in the USA
What's mildly irritating you today?
Explosive Diarrhea or Hyperglycemia?
I will be mean to you in this thread
The Last Word
The brain is a vicious little bugger
Vaccination & epidemic
May 22, 2009: K-9 Andy
Betting tips
let me give you a new user title
The 24 hour engorgement
The 24 hour engagement.
How good is your memory?
Ya Stoopit Potato!
May 21, 2009: Solar Stadium
Ginger or Mary Ann?
Word Association, part deux.
Do you have stuff from your childhood?
The WTF NSFW thread
Innie or Outie?
I finally bought my hot dog cart!!!
Be a post whore!
Steele's Speech to the RNC, 19 May
What I Learned Today
I cant believe I just ate.....

Some of those threads may not be about what you think they're about.

Very possible. I try to streamline my forum time by only clicking on threads that have titles suggestive that the content might be interesting to me. I'm online often, but usually only for short periods during the day.

I've looked at most of them, but not all of them.

This thread is about Vaccination & epidemic.

Having not read pages 11 to 15 thinking I'd find far too many more things to quote about I might have missed some information that makes my posting now inane. well maybe they're inconsequential anyway. I wanted to comment further on the over diagnosis of the 'autism spectrum'

I think that many kids are put under that 'autism umbrella' which are the pdd-nos diagnosis. That means kids who with 2 or 3 traits of autism but not any of the other traits are classified as such and put into special programs. It is my belief only that we as people/kids are a multi-special brew of humanity and most kids who fall or deviate from the norm to not benefit from being in a special classification at all.


In my estimation I think you are absolutely correct. Perhaps, just perhaps, I was wondering if some schools if they were smaller and more intimate would be more inclusive of others differences.


What book? It sounds interesting.

@sky: If I am reading you correctly, you are touching upon some of my thoughts, that, wrapped up in this issue is the nature of our fast-paced, cookie-cutter society having become callous and indifferent towards the uniqueness of people. The Onion ran the joke, Ritalin Cures Next Picasso.

ORLY?

Post 153. You must have missed it because it was on page 11. :rolleyes:

exactly..I love that sarcasm. To watch tv like all the normal kids what an acievment!



does anything profound come from mediocricy? And frankly I haven't met any special education teachers, except from State schools that actually understood that.

I was not commenting on the figures. I am not a fact gatherer. I was commenting from the experience of what I see in emotional growth classrooms as a TA. Kids with pdd-nos which falls under the autism spectrum umbrella as far as the educational setting goes. Alludes to the cookie cutter society flint commented about.

I have found that since pdd-nos is so differential some teachers will grasp onto any text book definition they can find so they can approach these kids in a way they understand without really understanding the true nature of the kid.

much more interesting than the puplic service announcement was

But it is indisputable that all of them evaded diagnosis in the past, or were misdiagnosed, because the diagnosis itself didn't exist until the 1940's and was not really in clinical use until the 1960's. It's come a long way in just the last twenty years, for that matter... my friend M is a social worker who specializes in working with severely autistic people, and in the past 20 years he's seen the diagnostic criteria, and treatment, change a lot... for the better, in his opinion. The definition of autism has been revised significantly, meaning far more people are now diagnosed with it.

http://www.bmj.com/cgi/content/extract/330/7483/112-d

A lot of disorders, such as ADHD, OCD, and depression, are sharply on the rise, and it's possible (perhaps even likely) that there are environmental factors, but I also suspect that diagnostic tools are simply getting a lot more refined and more people who would formerly not have been diagnosed at all, now are.

The diagnosis didn't exist--or the disease itself basically didn't exist? When did widespread vaccination use begin, again? Oh yes, the 1940s.


Many people suspect that. It's called the "Hidden Horde" theory. Because what is undeniable is the vast majority of these autistic individuals are not capable of caring for themselves into adulthood (please recall again that in this case I am talking about diagnoses of pure autism--not PDD, not Asperger's, not ADHD. All of those are rising too, as you say, but those individuals are often capable of caring for themselves and confound the data, so we look at the data without them to get a clearer picture.) So if these people were formerly not diagnosed at all, there must be hundreds of thousands of adults, aged anywhere from 30 to 70, either in institutions with a different diagnosis, homeless on the streets, or being cared for by relatives completely removed from the social services system.

I can type out the footnote references to the actual studies if you really need me to, but there are dozens of them.

ETA: Just to make sure the reference is all in one post: the current prevalence rate as of 2009 is 67 per 10,000.

I love how if just one person is sufficiently obsessed with learning about something,
the internet lets us all know as much about that thing as that person has time to type.

Tiki, seriously. Come on now. If I am typing out large passages from highly technical books about autism, do you really think I've never read the webmd page on the subject? The detailed history of autism has entire chapters dedicated to it, in multiple books that I have read. Want to post some wikipedia links for me too, and get it out of your system? We're beyond general definitions at this point in the discussion--do you, or do you not, have evidence of a study that can prove the existence of the "hidden horde?" Because it is the holy grail of researchers who believe the same things you do. They are increasingly desperate to prove that autism has been with us all along. The first one who could would be shouting it from the rooftops.

The crown falls deathly ill... silent I mean silent.

I think this has become a religious discussion, at this point. Your books contradict the majority of the body of knowledge and history of autism, but you continue to argue that they are more valid than all other study on the subject, because...

... well, because.

If a 200-word webMD article constitutes the history of autism from your perspective, then perhaps you ought to consider expanding your sources. The article mentions Leo Kanner in passing--I have read excerpts of Kanner's actual notes from his actual cases when he first began seeing autistic individuals in his practice. My books do not contradict the body of knowledge about autism, because they are for the most part nothing but collections of the body of knowledge about autism. They put all the studies in one accessible place, and point out methodological flaws where they see them. It is the current body of knowledge itself which contradicts what the CDC and various other institutions are telling the public. Either they can back up their assertions with study data, or they can't. And so far, they can't.

In order for there to be new levels of diagnosis of autism, there would have to be reduced diagnoses of other things... that would spring out if we had the right numbers to look at, but the numbers are hard to find... but surely other people have looked at numbers.

You'll see it, pages 24 through 41. I already posted a photo of just one of the charts showing that other diagnoses have held steady.

OK cool. That gets us an awfully long way.

What I think is interesting about your graph is how it has no sudden shifts, it's all just up and up, slowly over time. It's quite even.

There are no bumps in your graph, therefore the introduction of one single vaccine, or change in one particular vaccine, is probably not the cause. If it was, there would be a spike 2 years after the change, followed by a plateau once the percentage of affected children had been diagnosed. Would you agree?

That graph only shows the increase from 1994 to 2002. The other graphs show a steady level starting in the 1960s, then a bit of a slope upward starting around 1971, a more significant jump up in 1979, a huge spike upward after 1984, and another increase in slope after 1987.

It is interesting to note that as recently as 2007 the CDC used to post historical vaccination schedules on their site. They have now taken them down. But post #2 from this page is a basic rundown of the years that certain vaccines were added:

http://www.mothering.com/discussions...d.php?t=655582

1984 is when the aggressive addition of new vaccines every few years began.

see...i noticed that TGRR came to the defense of his friend Tiki.

say what now

Humorous: Jenny Mccarthy

Jenny McCarthy is Amanda Peete. These are really difficult questions with spokesmodels randomly choosing up sides. It is like Al Gore being the face of Global Warming. His (lack of) credibility probably shouldn't be part of the conversation, but the science is so difficult people look for a short-cut finding someone they trust to do their thinking for them. We've had too damn much side-choosing over the last several years, hopefully we can get at the truth. If we cannot sort the science ourselves, at the least, we should put our trust in folks with a history of intelligence and intellectual honesty. Look for respected people who change sides.

"There are no fundamental philosophical differences; there is bad grammar."