Where Are All the Autistic Adults?
May 9, 2008 by Kristina Chew, PhD
Filed under Health
The British government has announced that it is planning to calculate the number of autistic adults in England. The £500,000 project is the first to specifically study the number of adults who have autism, the BBC reports.
It will be interesting to see how the study is conducted: The tools for diagnosing autism in adults are neither as valid nor as reliable as those used for children. And:
The group has been hard to measure partly because so many people have grown up before improvements in recognition and diagnosis; and some may have been labelled inappropriately as having mental health problems or learning difficulties or not acknowledged at all.
Academics at the University of Leicester will lead the research which will include a study of a sample of the adult population – a sort of mini census.
Their challenge will be to find some way of taking account of those adults who have not been diagnosed to achieve as much accuracy as possible.
Once the work is complete, the government will use the statistics to craft the first national strategy for adults with autism to be published next year.
Already dwarfing the basic question of “how many autistic adults are there” is another concern: Is the prevalence rate of autism in adults the same as it is in children (1 in 150)?
If it is not the same—as David Kirby argues over at Age of Autism by citing a 2004 study in Scotland which found only 645 adults with autism, or, that is, adults who were actually diagnosed with autism—-this would mean that there are many, many more autistic individuals today than in the past; such a finding is taken as proof of a so-called “autism epidemic.”
If the prevalence rate is the same, this would suggest that not only has autism always existed, but that the reason the autism rate has risen so dramatically is recent years is because we have a much improved and much more precise understanding of what autism is and of how to identify it in children. And—while the occasional person still says “I’m sorry” to me when I mention that Charlie is autistic—the stigma of having an autistic child has lessened significantly, and people are much more willing to talk about autism publicly.
Kirby affects puzzlement at why more autistic adults don’t come forward and be counted:
“With all of the media attention on autism these days, one would think that adults with the disorder would come forward in search of social services, adult education, job training programs, support groups, and other ways that would make their numbers be counted.”
Kirby might think this, but if he had studied what the options for job training, education, and social services are for autistic adults with the same intense focus that he applies when discussing environmental causes of autism, he would note that, in most cases, options for all of the above are not suitable, not even good and not even available (as in, they don’t exist). He would note the many reports of parents whose adult autistic children sit at home with no job and nowhere to go after turning 21. He would note that the media attention on autism today is primarily focused on autistic children, and especially those who are young and cute.
There is, of course, nothing wrong with being young and cute (my own son was indeed so as a toddler and preschooler, once upon a time—-ok, he’s still a quite good looker, I think). But it’s a different matter to get experienced and motivated teachers and aides for an adolescent with the beginnings of a mustache and a muscular build (no more carrying); what about for a potentially 6 foot tall minimally verbal adult? And, much of what the media has to say about autism is not exactly upbeat: Autism is lifelong, makes life difficult and parent “victims“; autism is like a thief in the night that took away a beautiful child and left…..autism.
So, maybe the question is ask is not only where might be all those adults with autism but where are the services and supports for them?
Hi Sullivan –
“If one then wants to go back and see if the biomarkers are different amongst these two groups, it might make some sense. To do it before having an idea of which individuals might be autistic is putting he cart well before the horse.”
The underlying assumption in your argument is that a large percentage of those with schizophrenia will also have autism. My assumption is that they will not. What is to keep us from getting guidance towards the ‘right’ answer from searching for chemical profiles?
By way of example, in a study of one hundred children with autism, nineteen of them were found to have cholesterol levels in the bottom five percent for two year olds. If the autism of yesterday was given a diagnosis of schizophrenia, shouldn’t we be able to find similar percentages of people with low levels of cholesterol in people with a diagnosis of schizophrenia? Cholesterol levels may, of course, be affected by eating habits, but other profiles could be identified. Or perhaps stored blood could be used as a sampling store.
It wouldn’t have to be all or nothing (and likely wouldn’t be); just a better picture.
“A clearer measure would be to test adult autistics without schizophrenia diagnoses. Unless, that is, you are proposing that these biomarkers are (a) very generalized to the entire autistic population or (b) a marker of children who will grow into adult autistics with schizophrenia. Somehow, I doubt that is your intent.”
My intent was to describe a mechanism by which we might be able to see if physiological indicators found in autism exist in the older population at the same rate as the younger population. This is one way we could get more information towards the question at hand; are there as many autistic adults as there are autistic children?
Make sense?
- pD
If the autism of yesterday was given a diagnosis of schizophrenia, shouldn’t we be able to find similar percentages of people with low levels of cholesterol in people with a diagnosis of schizophrenia?
No. I’d give a rough estimate that only about 15% of adults with schizophrenia are really autistic. (I could go into details as to how I determine that). You might find similar percentages in the populations with OCD, Bipolar, ADHD and speech disorders. You’ll find most autistics in the population with mental retardation, and in the population at large.
So if 15% of the adults with schizophrenia have a 19% prevalence of low cholesterol, will we detect an effect? The math doesn’t look promising.
Furthermore, what if schizophrenics as a group have high cholesterol? What if non-autistic schizophrenics have low cholesterol as well? We would’ve proven nothing.
Frankly, this methodology does not appear valid to me. The results, whatever they are, would be easily challenged.
Wow, I cringe at reading the Sarah Crider thing again. I have a cousin whose roommate, companion, whatever, is and has been an Official Person at Georgia Regional Whatever They Call It, These Days.
Haven’t spoken to either of them in a few years, for other angry familial reasons….
pD,
The topic of this blog entry was not, “lets find “cool biomarkers!!!” or “let’s exploit suspected biomarkers in research on adults!!”
The topic is going out and identifying autistic adults and you took the ball and ran with it way off topic. I’m trying to respond not just to you, but to all the putrid assumptions that DAN!/ARI, Bernie Rimland, David Kirby, Rick Rollens, Mark Blaxill and the rest of the biomuddled. These putrid assumptions are that there are very few autistic adults. If there are very few then no on needs to develop programs to help them. And in fact because of these jerks screaming “epidemic” for the past 6 or 7 years they may have set back programs that might otherwise have been developed to help auitstics. Every stinking politician allied with your friends at DAN!, pD, is screaming and whining about a tidal wave of destruction coming their way. Well, if the rate is “high and stable” as the evidence points to, then all you have to do is look at the “success stories” of any “type” of autistics and use them to plan for any kids’ future. If the rate is high and stable instead of all this pathetic hand wringing, “What’ll we do??? What’ll we do??? This massive wall of monstrous soulless beast children are about to hit adulthood and destroy our economy beyond recognition!!!!” what folks could be doing is using the autistic adult (survivors) to “practice” on. Which kind of housing works best for adults with PDD,nos plus ____ (depression, anxiety, dyslexia, hyperacusis….). Hint: leaving an autistic adult without services and “letting” them live under a bridge as a homeless person is PROBABLY not idea.
Asking the right questions with the right attitude about the adults living now (or 7 years ago) would have been a win-win situation. Which kinds of jobs work best for autistics? Well, guess what there’s a whole bunch of currently diagnosed ASD people they could study. You don’t even NEED to go count every last one to assume they are out there or to help the ones we have now… and like I said, for the few self-serving or greedy parents of little kids, it’s a win for them because the “bugs” could get ironed out they wouldn’t be trying out different programs on your kid!
I wrote:
“If you were educated in the least in the ethics of “screening” for any disease/disorder/problem/whatever [then you would know that] it is widely understood that you do NOT screen for conditions, no matter how heinous, if there is no treatment available.”
Your response was:
“The AAP recently recommended that every single child in the United States be screened for autism by age two. Maybe you should give them a refresher on ethics.”
“Totally weird” hardly begins to describe this statement.
There IS H.E.L.P for two year olds. Say this slowly many a few times: “There is help offered for two year olds.”
Isn’t there???????????????
Yeeeeeees, there is. All kinds of things, good and bad are offered for 2 year olds, much of it for FREE.
And the AAP wouldn’t be screening for ASDs in 2 year olds if there was no H.E.L.P. available for them. See how that works?
Is there autism specific help available for 40 year olds????????
Most of the time the answer is, NO. NO. and NO.
You also quote me:
“In other words, they will never screen for an incurable disea[s]e. Won’t happen. ”
And droned:
What about HIV?
Do they do population screening for HIV in situations where there is no help available? I don’t think so, deary. There is treatment available for HIV. If some outfit is screening for HIV (and I’m a tad out of the loop here, how often is that done? Is it required for entrance into college? Is it required for a marriage license?) then they aren’t “screening” all people on their death beds with massive infections. “Screening” deary would be done in populations where there would be treatment (say it slowly with me now) a v a i l a b le. That’s right, they might screen people for whome treatment would be available. Or possibly so that the person could avoid infecting others. But you would do it just for the heck of telling people that they have a fatal illness.
It’s bizarre. Your reaction makes it look like you think I’m making this stuff up.
You acted like I made up the rule about not “inflicting unintentional insight” on people. I’m sorry you are so uninformed about human-subjects research ethics, but that doesn’t make me wrong. It makes you uniformed.
You added:
“In any case, I wasn’t talking about screening for the diagnosis of autism, but instead, the physiological markers of autism. Further, I’d acknowledge it is entirely possible to have some of these without having autism; but then again, my suggestion was about getting broad outlines, which is still useful.”
How about we start with the assumption that autistic health can change over time. How about we admit that currently dx’d autistic adults aren’t clamoring to have their “guts” “healed” or have their “yeastiness” dealt with, or begging for a cure for their “methylation”. They aren’t sobbing at night because no one understands their need for camels milk or Valtrex. They aren’t craving to have someone to discuss their aggravating neuorglial activation with.
They need help with stuff like cooking, shopping, transportation, recreation…. oh little things like respect from autism orgs… not being described as walking monsters about the destroy economies… that sort of thing.
These are bigger priorities, aren’t they? Or do you even “care”?
I left out the “n’t” off of “would” in this sentence:
“But you would[n't] do it just for the heck of telling people that they have a fatal illness.”
Meaning, public health people don’t screen just to tell people that they are going to die of something in particular. It’s not done.
Chill, Camille. Yer getting too exercised, here, to keep a cool head.
I speak as your drunken heathen lapsed-Methodist well-wisher.
Chilling.
I’m grateful for this discussion. Understanding, knowing that there’s a lot more autism out there among older individuals has helped me understand many friends, relatives, and colleagues, and all for the better.
Even if the “stigma” about children being autistic has lessened, it seems we have a long, long way to go before this being lifted for adults.
A few weeks ago I posted numbers from a study of deaths of autistics in California. There was no evidence that they are being killed in numbers. I’m not saying this never happens, but I do say it is too rare to be of significance.
Thank you, Kristina for being patient with me as I lost my patience.
Mayfly I don’t think I’ve read the paper you are talking about or read about it.
Did they talk about deaths in, say, 1945 in institutions? Deaths in 1945 of people who would otherwise be alive today, say if they had not been put in an institution … exposed to a bunch of communicable diseases or otherwise abused to death? The old time “State Schools” here could be not much better than what we think of when we hear “Romanian orphanages”.
There were no doubt loads of autistics who died in institutions under the label of “mentally retarded.” Go read about Larry Bissonette. He would have been thought of as retarded by most people and had he died when he was in an institution, he probably would have been counted as an MR person if they ever even counted the deaths of people in those institutions.
I realize that “holocaust” has a particular meaning and it’s not good to throw it around, but if you go back and look at how the disabled and mentally ill have been treated (and are treated now in institutions in the US and in some “neighborhood care homes” it’s not so pretty. And I suppose if the disabled were seen as an ethnic minority their deaths might add up to something like an “ethnic cleansing.”
I had a good friend who was profoundly retarded and as far as I can tell, undiagnosed autistic (Frag X), die while in the care of a care home. They didn’t kill him, not outright anyway. But it looks like the system killed him. He didn’t get adequate medical care, in my opinion and I think this led to his death in his late 30’s.
Lots of people died the way Sara Crider died. And probably some have been killed with drugs deliberately and had their deaths reported as accidents or natural causes.
Plus, with so many autism spectrum adults either passing for “quirky” to people who don’t know them well, or misdiagnosed as mentally ill or retarded, how would anyone know how many “autism spectrum” people have died prematurely since say, 1945?
However many there are who died prematurely, they wouldn’t be answering the door in a canvass of a neighborhood and they wouldn’t show up for any research at all no matter what compensation was offered because, …. they are dead. I just want that to be taken into account to whatever extent that is possible.
The story of Greg Garness is particularly odd since he was diagnosed by the autism brain bank people, shortly after he was dead of suicide, and his parents had no clue until about the time he died that he was on the spectrum. (The brain bank people wanted his brain and I think I found where he showed up in an autism research paper listed as a man of the right age who had died of a gunshot wound.) His parents might have thought of him as stubborn or as having a learning disability, or socially inept, I don’t know, but they didn’t think of him as being on the spectrum before he died.
How many homeless people die under a bridge or in an alley somewhere without a diagnosis? How many autistic people are thought of as schizophrenic because they talk to themselves (as opposed to talking to the voices in their heads)? Every time I see a homeless-looking person walking along muttering, I have to wonder, what’s that about? Autism, drug abuse, or sz?
Hi Joseph -
“Furthermore, what if schizophrenics as a group have high cholesterol? What if non-autistic schizophrenics have low cholesterol as well? We would’ve proven nothing. ”
If schizophrenics have low, high, or normal cholesterol could easily be determined, could it not?
The point is we are rapidly accumulating a wealth of knowledge of the biological profiles of a number of disorders. You are worrying about the details of a particular idea, as opposed to the value of the wealth of clinical analysis currently be generated.
What about BDNF, glial activation, ammonia, lactic acid, carnitine, magnesium, glutamate, lipid peroxidation, oxidative stress, or plenty of other values? We could easily, easily conduct a study to evaluate some of these values in smaller populations that have only one diagnosis and determine if there were overlaps; i.e., , schizophrenia has ‘normal’ values of carnitine, autism does not. At this point, larger studies could be made. You make it sound as if this is an impossible task to undertake; I think it is just a matter of taking small steps, and aggregating the results.
While we disagree, almost always, I do appreciate your cordiality.
- pD
“The point is we are rapidly accumulating a wealth of knowledge of the biological profiles of a number of disorders. You are worrying about the details of a particular idea, as opposed to the value of the wealth of clinical analysis currently be generated.”
Just a note; it probably is good to know if the logical value of the surrounding idea is consistent before attempting to make the factoids to which it might apply relevant.
Cliff
Actually research is showing us none of that, what it is showing is an increasingly larger number of inconsistent studies each demonstrating the errors of accumulation consistent with small studies where it only takes two of a kind to significantly skew the study into thinking all arthritics are redheads if you catch my drift.
There are no bio markers of the kind that Passionless drone wants to see of necessity in order to prove a point. The reasoning is entirely backwards. We should not presume that current nosologies are correct when the evidence is accumulating towards the contrary assumption.
Hi Laurentis Rex -
I’m not sure I am getting your drift; are you arguing that the studies finding different chemical profiles in autism are inaccurate? Could you provide some examples?
What about studies wherein changes of levels of chemicals have been shown to correlate with severity of autism?
I am also not sure why you feel my reasoning is entirely backwards.
I am asking genuine questions.
- pD
Hi Cliff –
“Just a note; it probably is good to know if the logical value of the surrounding idea is consistent before attempting to make the factoids to which it might apply relevant. ”
Hm. I am confused yet again. Do you feel that the surrounding idea I have proposed has no logical value? If so, can you elaborate as to why?
- pD
In asking that question, Joseph effectively was questioning whether having any specific biomarker (using the value of cholesterol as an example) would necessarily connotate anything about the conditional terms and status of the diagnosis over time. By effectively saying that “you’re worrying about a particular idea as opposed to looking at the wealth of clinical analysis” (presumably based off of biomarkers), you’re effectively begging the question that was literally just raised.
Cliff
Do you think I have time to do your work for you, biochemistry is not my line of research, neuorology is not even my main line of research, the interelationship between cognitive neursoscience and education in autism is. (it is cognitive theries that inform my working hypothesis) I would have to trawl through hundreds of abstracts and notifications I have on my computer to do that.
I am merely noting that the vast majority of studies which I have been alerted to and seen (and that is a lot) have what you might call opportunity samples, and small ones at that, so that there is no real statistical way of showing whether these represent a subset of a larger population or entirely diverse populations, or no population at all (random) It does not take long to scan a study and determine potential errors.
The only way to really sort out one condition from another is to catologue every potential biological marker in a very large population, and sift them into groups (the mathematics are huge) then to see if these groups fit into any outwardly observable similarities or not without having any preconceptions that the similarities fit any existing pattern that has been named (in essence a value free blind study)
A form of grounded theory in effect.
There is a problem in assuming that any particular disorder in DSM is discrete or multifactorial or indeed whether it contains very distinct and seperate populations under the same heading.
Its like the problems of using genetics to demonstrate racial characteristics, the degree of difference in any supposed racial grouping is greater than the similarities.
I have written a paper about the risks of assuming there is even such an entity as autism before presuming that you can argue from what you have already decided is the entity, what it consists of.
It is like saying this is a tin of beans, therefore anything I find within are beans, when for all you know despite of the arbitrary lable it might contain other pulses and even nuts.
I have submitted my paper to the DSMV process and I hope to have it published eventually. You will have to wait like everyone else for peer review to take it’s course if I do this properly.
Why not email David Amaral and ask him the same question and see if you get any more of an answer from him. I am telling you to do your own work and to learn how to read studies properly and critically evaluate them instead of merely deciding whether they fit in with what you think you already know.
If schizophrenics have low, high, or normal cholesterol could easily be determined, could it not?
I don’t think you got what the issues are, pD.
Let’s say we find that schizophrenics as a group have low cholesterol? Isn’t that what you were expecting to find in the first place with your proposed methodology? Did that prove schizophrenics are autistic? Not in the least.
Let’s say we find that they have high cholesterol. Congratulations; you’ve found something about schizophrenia. Does it tell us whether a subset of schizophrenics are autistic? Not in the least.
If we were to find that autistics and schizophrenics have exactly the same biomarkers, they yes, maybe you would’ve found something of interest.
But that’s not gonna happen. It just won’t. Whenever you compare groups of people classified by different means, you’ll find biological differences; be it comparisons of males vs. females or comparisons of people of different ages, or comparisons of people diagnosed with different so-called mental disorders.
The point is that, whatever the findings, they really tell us nothing on whether schizophrenia and autism overlap.
Well in the old days of London transport it may well have been the case (given the differential statistics of heart attack) that bus drivers had higher cholesterol than bus conductors.
Does this mean that they were distinct orders of human being with different biochemistry, or does lifestyle and excercise have something to do with it.
You can’t say that a biochemical marker causes anything or whether it is the byproduct of some other process.
If you were to suppose that a cholesterol test were all that were needed to seperate out which of a sample of LT workers were conductors and which drivers, you might find a significant number of false positives and negatives where other lifestyle factors, such as smoking and drinking impinge upon excercise, notwithstanding some drivers may well have been part time athletes. Indeed would a sample of bus drivers be substantially different from taxi drivers, who we know to have different brains, again not knowing whether it is this greater mnemonic capacity that predisposes them to learning the knowlege, or whether the knowlege is what causes that uneven development in the brain.
pD,
You’re probably going to have to take a course in sophistry before you can win these debates.
No, all pD has to do is demonstrate (perhaps with some math and an example) that by means of biological testing it is feasible to produce evidence that autism and schizophrenia overlap or don’t overlap.
I just don’t see it. To repeat myself, whatever the findings, in whatever direction they may be, they would be evidence of nothing (except in the unlikely case the markers are found to be identical in both groups).
Even if you find identical biomarkers, there are issues as to the causation of those biomarkers, because you’d have to establish that they were because of factors that were independent of something externally circumstantial that informed both the schizophrenic and autistic experiences, respectively.
Cliff
To further illustrate the point, this paper says that suicidal persons with delusional disorder have low cholesterol. Is this evidence that suicidal persons with delusional disorder are autistic? Is it evidence that autistic persons are suicidal and delusional? Not in the least. The proper way to tell if there’s overlap is, clearly, by checking if there’s overlap. Period.
I’d love to know how many Autistic adults there are in the world. I’d love to see some statistics that show me that people who weren’t formally diagnosed and who didn’t go through hours of intesive therapies or have restrictive diets or try experimental treatments still managed to grow up just fine. There are times when I feel like despite my best efforts I am not doing enough. Money stands as a great barrier between the therapy we do and the treatments everyone seems to think we should be doing. My own mother constantly laments about how she heard that this or that family is doing this or that intensive thing with thier autistic child. Indeed, it seems everyone has heard of a new miracle “something” that they think I should be doing. They are appalled when I say that I’m unwilling to risk my son’s health on radical treatments. They act as if he is DYING of AUTISM and I REFUSE to cure him. I would love to see more functioning adults so that I could say “LOOK! SEE! It’s NOT the worst thing in the world!!” But, I don’t think this study will give me that. Like Club166 said… most cases will be hidden under other diagnoses… and nobody wants to attach themselves to a stigma if they don’t have to.
Well, Jamie Lee, you can come see my mom and me if you want to see adults, with no prior other diagnoses, who received their diagnosis at age 54 and 24 respectively, who never received any therapies of any kind, or any special diets of any kind, and who grew up just fine. My brother too, although he got his diagnosis a bit earlier: just after puberty. Oh yeah, and he was the speech-delayed one (we’ve also got plenty of autistic family members, whose diagnoses, looking at traits, would have varied from Asperger to classic autism, but… they don’t have any diagnosis, autism or other). We’re all doing fine, although if you want to hear about people who need no services and aides at all, that’s not us.
We didn’t feel there was any stigma that we were attaching ourselves to… I’ve also always been quite puzzled about other people telling me that it must have been so hard to receive a diagnosis, that it must have been a shock, that I must have gone through such a period of acceptance, or who say they are sorry to me when they hear about my diagnosis.
Sorry, I misread your name. Jamie Sue it is.
Jamie Sue: Allow me to recommend a paper: Kanner (1972). This is from a time before there were autism interventions. Kanner’s findings on institutionalization as a factor in outcome (something that hasn’t been subsequently looked into) are particularly eye-opening.
Hi Joseph –
“If we were to find that autistics and schizophrenics have exactly the same biomarkers, they yes, maybe you would’ve found something of interest.
But that’s not gonna happen. It just won’t. Whenever you compare groups of people classified by different means, you’ll find biological differences; be it comparisons of males vs. females or comparisons of people of different ages, or comparisons of people diagnosed with different so-called mental disorders.”
Oxidative stress is being found to be an exceedingly common biomarker in a wide variety of neurological disorders. The fact that the causes, and impacts of this, are not yet well understood does not mean that they will never be understood.
The argument seems to be that it is impossible to discriminate between specific disorders based on chemical profiles. Yet, we certainly can identify specific disorders, or at least a tendency towards them, based on exactly there markers if our other point of comparison is ‘normal’ values.
How else do we know that people with autism have different levels of serotonin, glutamate, tnf-alpha, cholesterol, oxidative stress markers, carnitine, muscarinic receptors, glutathione, or plenty else if such a comparison is impossible to make? Of course, we know these things because it is possible to make a discrimination between ’standard’ values and ‘unstandard ones’.
If we want to replace ‘normal’ with something else, the necessary steps are identifying common markers in autism alone, in something else alone, and them in combination. This does not have to be tied to a single marker, and does not have to be a surefire diagnosis to give us more information.
Take care!
- pD
“Oxidative stress is being found to be an exceedingly common biomarker in a wide variety of neurological disorders. The fact that the causes, and impacts of this, are not yet well understood does not mean that they will never be understood.
The argument seems to be that it is impossible to discriminate between specific disorders based on chemical profiles. Yet, we certainly can identify specific disorders, or at least a tendency towards them, based on exactly there markers if our other point of comparison is ‘normal’ values. ”
Except oxidative stress, given its extremely wide umbrella of effect, isn’t really saying all that much about the actual condition as it is unique. All it is saying that there is a value that isn’t normal. But the reasons for these abnormalities are not as clear as you make it sound. In fact, given the uniformitive of oxidative stress (which I’m using as an example), the first suspect you’d be involving is looking towards some individual, yet broad, factor that informs the experiences of those with multiple sclerosis, AIDS, dementia, and whatever the heck else is found by that biomarker, rather than trying to say it is something specific to all of the conditions. In other words, in terms of the actual status of a condition, a biomarker doesn’t necessarily say much. I would bet you a good deal of money (ok, if I had a good deal of money) that doing so is going to launch us right back into Bettlehiem-esque thinking when it is revealed that autism biomarkers are similar to those of general stress, and that then is considered in terms of trauma. Just food for thought.
Cliff
The argument seems to be that it is impossible to discriminate between specific disorders based on chemical profiles.
No, that’s a different argument. The argument is that you can’t tell whether a subset of schizophrenics are autistic or vice versa, with biological testing. For that, you just need to do it the normal way, i.e. diagnosing autism or schizophrenia.
It doesn’t matter if autism and schizophrenia have distinct biological profiles. There can still be overlap.
Also, I would point out that we’re discussing a theoretical research endeavor aimed at disproving considerable prior research that seems hard to question. Go to PubMed and search “autism schizophrenia comorbidity”. Is there any question that autism and schizophrenia overlap?
After all, the point is finding out if the traditional diagnoses overlap (because of the “epidemic” question). We’re not after “true biological diagnoses” even if there were such a thing.
Of particular interest, in addition to Nylander & Gillberg (2001), which I mentioned elsewhere, is Pary (1993).
Norah, Iam more interested in the enviroment in and around persons that have autism. If I may ask if you know if that your water compary puts fluoride in your water supply and when that happened. You said that your mother is 54 and was it in the water at that time that she was born and how old was she when she found out that she had autism.I guess she had all of vaccines at the time.
As you can see that I think that the environment is just as importment as looking fo the biomarkers.
There you go, Norah; someone just diagnosed your mom with fluoride poisoning over the internet, based on the fact, apparently, that there must have been water close to where she was born 54 years ago.
Oh, dear…
Cliff
Actually I do not like Flouride I wish I did not have to drink the muck, water’s hard enough as it is.
The jury is out on it’s harmfulness, but on the contrary I do not think it is achieving what it claims, and where it is not natural to the water supply (eg Derbyshire) we don’t really need it.
As if tooth decay is the biggest problem in modern childhood in the West, Obesity probably trumps that. Perhaps they should be amphetamines in the water
I’m with Jerry Pournelle and Laurentius Rex on the fluoride; while teeth are still forming you need some in your diet, not afterwards. Topical application to permanent teeth can help preserve them, but drinking it won’t, and might hurt one generally.
Speaking of counties, I think it was Deaf Smith County, Texas, which had so much fluoride in the water, and so many people with perfect teeth, that somebody first started looking into the connection.
I know when the companies started putting fluoride in our water: never. It’s forbidden in our country
. Sorry!
Even before it was forbidden (early 70’s), only a few towns had experimented with it, and not my mom’s. And just to make it clear: they didn’t brush their teeth either (so no fluoride in toothpaste). Dental hygiene wasn’t very well known in the environment she lived in, didn’t get into swing until she was in her 20’s or so. Her mouth is evidence of that.
And she’s always known about having autism too, or at least noticed the vast differences of herself compared to the neighbours etc. That specific diagnosis was not yet available when she was young. She never received another one because her family and parents never thought she was any different (from themselves).
She did not receive all of her vaccines.
Hmm… let’s see… there was the rest of the family without diagnosis though… or with other diagnoses, all suspiciously like her or weird in other ways.
P.s. Yup, they might have had _genetically_ perfect teeth.
I had fluoride in my drinking water, at least as long ago as my grown-up teeth were forming, and I have very bad teeth.
I’ll never play the clarinet again.
P.p.s.
Lastcrazyhorn, and SqueakyWheelseeksGrease, You take care of yer teeth, gals, I mean lotsa floss and excavating the sulci with the red rubber pointy things, and the fluoride rinse, and all, because you just cain’t play the French Horn properly without yer front teeth!
And I like French Horn music.
Dennis Brain was right cool, not least in the manner of his death.
Ok lets get off the nutty fluoride issue.
Kristina, since you said there is a autism liberation movement of sorts. Could you give me the evidence of this? In fact I would love if you could give me what you think are its major outline events people themes etc.
I am genuinely interested. It is important to see what an intelligent person like yourself makes of all this since you do have the added advantage of being in thick of things so to speak. I am despondent at the moment over any effectiveness against the curbies modern day eugenics.
theasman, seeing that this thread has already drifted so far, I think we should talk about wind instruments, and lips, and teeth, and how (sadly) our teeth don’t usually last all of us for all of our lives.
I loves me some Mozart horn concerti.
If you can play the horn part to one movement of any of the four of them, I’ll defer to you.
The problem is, in terms of anything that might be a sustained popular movement, we’re at least a step behind in which there hasn’t been a highly developed structure and outreach to autistics, as far as I’ve seen. It just hasn’t existed. But what has come is more promising, as the little pockets of activity, rather than attempting to be representative, have been more issue-based by nature. If that could maintain when there is more structure, that would be absolutely fantastic in terms of equality of autistics in the public sphere. But the structures are so small right now that I don’t know for sure. I intend to learn about that prospect, though.
Cliff
Regarding the fluoride: It’s the part of the dental exam we’re still working on with Charlie…..
Regarding autism liberation movements, I was thinking of (and am ready to stand corrected):
Aspies for Freedom and the Autistic Liberation Front on Second Life.
Hey I was on that wiki for AFF until amy of AFF removed me.
Yup, I know, Amy is right free with the ban-hammer.
The ASman with his aspie supremacist ideas and fantasy origins mythology would be the first against the wall if an autistic liberation war were to break out.
You are an extremist and you know it, out of step with social model thinking and the recognition that autistic liberation is an outgrowth and offshoot of a wider disability movement that has been fact for some thirty years at least.
As for teeth I have lost too many through lack of care, I have to chew on my gums on one side, however I still have enough to blow the flute. I take a lot more care over my dentistry these days
Asserting one’s equality is not being supremacist. The “old guard” has a few successes as I have pointed out many times. We who do not accept this pigeon hole of disability are fighting for the rights of everyone, with having to bend over, asking “may I have another”. When we are successful no prenatals for downs syndrome us or others among other issues.
I dont accept your label of being an extremist with all its connotations. I dont really care if the sheep of this world are upset I am not following them to slaughterhouse.
Just because you and a few others have decided that our must be the disability movement, doesnt mean we have to as well. We dont need your approval. I remember this guy on the forums a fawning disciple of dawson. He said that AFF was wrong because we might mess things up. We should only let dawson do it , she knows best. He also said he did not open his mouth afraid that it would only make things worst. What bull! As if he was so important.
We dont have to accept this confused and old fashion models of disability – social or otherwise. We can carve out and create one that is meaningful to all of us.
I am writing another blogpost on this as well.
Well for what it is worth, I have now established who is going to be leadingg this research, and I have already made tentative contacts.
The guy in charge of the team will be at IMFAR, so if I get the chance to speak with him there (and he has been warned to be expecting me) I will be able to put across many of the epidemiological, pragmatic and ethical concerns.
If I don’t get the chance to meet him I shall certainly correspond. Once contact is made I don’t think any of them will be able to ignore or sideline me as I intend to be thoroughgoing and thoroughly academic in this.
@laurentius-rex, would like very much to know what he says and what his response to your concerns are—-