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AspieOtaku
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20 Apr 2012, 2:16 am

[youtube]http://www.youtube.com/watch?v=zalnED1LZsQ[/youtube] these people say as if it is a horrible thing. Maybe in 10 years Autism will be a majority and these people on tv will be the ones thought of as having a disorder. My oh my have the tables turned muahahahhaa.


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aghogday
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20 Apr 2012, 2:39 am

Unless one has been an 8 year old child in a class for the developmentally disabled in the school systems, it's highly unlikely they would ever be part of this statistic. These are government sponsored studies, that arrived at the 1 in 88 number, from this specific demographic of the population.

Not likely that many people visiting and actually posting on this website, would have been part of that statistic.

The government projects up to 500,000 of these children and similiar children that have been previously statistically measured as having autism spectrum disorders in the school system in programs for those with developmental disabilities, will need support from family or society, to survive, as they enter adulthood in the next decade. That is the source of concern that most people in society have, when they hear the word autism.

It government estimates are correct, it is a real concern for several hundred thousand autistic individuals, their families, their friends, and others that understand the full extent of their difficulties in life.



LennytheWicked
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20 Apr 2012, 10:01 pm

aghogday wrote:
Unless one has been an 8 year old child in a class for the developmentally disabled in the school systems, it's highly unlikely they would ever be part of this statistic. These are government sponsored studies, that arrived at the 1 in 88 number, from this specific demographic of the population.


They put me in one of those, and I had no cognitive dysfunction at all. They also put quite a few of my friends in them, and most of my friends are at my level or even slightly higher.



aghogday
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20 Apr 2012, 10:38 pm

LennytheWicked wrote:
aghogday wrote:
Unless one has been an 8 year old child in a class for the developmentally disabled in the school systems, it's highly unlikely they would ever be part of this statistic. These are government sponsored studies, that arrived at the 1 in 88 number, from this specific demographic of the population.


They put me in one of those, and I had no cognitive dysfunction at all. They also put quite a few of my friends in them, and most of my friends are at my level or even slightly higher.


There is actually less than 40% of the children in these programs statistically measured by the government measured with IQ's at lower than normal levels.

The 500,000 number provided by the government are those children more severely impacted by their symptoms, that are projected not to fully be able to provide self-care for themselves, to gain independence in life.



MrPickles
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06 May 2012, 1:39 pm

This is a classic case of Headline mongering and scare tactics based on a worthless number!

when the dust settles I suspect that if you count everyone on the spectrum to lead to a count somewhere in the range of 1:20 or even a bit lower. After all we have not even begun to count those that are barley on the spectrum. Nor do we have any any standards for deciding just how far along the spectrum you must be to counted - so - the count will continue to grow as time goes as time passes.

This is a classical problem of NT thought process - there is no standardized set of requirements for diagnosis or inclusion - so the sloppy thinking of most NTs will not able to differentiate between someone that is just enough autistic to qualify as autistic now and someone just short of the required amount of autistic features to qualify at present. So they will soon start including more people as autistic and will again panic about the number of autistic people growing without realizing that the only change was that they moved the line.

People - if you are going to use statistics you must have a fixed set of rules for generating the statistics or you just have worthless crap and numbers that are meaningless.

The 1:88 ratio does not have any basses in fact. Nor can we make any connection to any other ratio number from the past.

To be valid we need to have a means of knowing that all the "normal people" are truly NT and not autistics pretending to be "normal" - I suspect that most of the girl autistics are doing just this.

We will also require a objective test method - weather or not you are diagnosed autistic or not may be more do to the doctor that made the decision then any presentation of "symptoms".

To be able to match numbers over time the only variable that can change is time. In that there are not set standards for diagnosing autism there can be no way to hold all the other factors fixed over time or even to know how much change to allow for over time.

We have not even touched on the very strong likely hood that what is termed Autism may well be several different conditions, personality traits and illnesses being confused with one another for lack of any real understanding of what we are dealing with.



aghogday
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06 May 2012, 5:09 pm

MrPickles wrote:
This is a classic case of Headline mongering and scare tactics based on a worthless number!

when the dust settles I suspect that if you count everyone on the spectrum to lead to a count somewhere in the range of 1:20 or even a bit lower. After all we have not even begun to count those that are barley on the spectrum. Nor do we have any any standards for deciding just how far along the spectrum you must be to counted - so - the count will continue to grow as time goes as time passes.

This is a classical problem of NT thought process - there is no standardized set of requirements for diagnosis or inclusion - so the sloppy thinking of most NTs will not able to differentiate between someone that is just enough autistic to qualify as autistic now and someone just short of the required amount of autistic features to qualify at present. So they will soon start including more people as autistic and will again panic about the number of autistic people growing without realizing that the only change was that they moved the line.

People - if you are going to use statistics you must have a fixed set of rules for generating the statistics or you just have worthless crap and numbers that are meaningless.

The 1:88 ratio does not have any basses in fact. Nor can we make any connection to any other ratio number from the past.

To be valid we need to have a means of knowing that all the "normal people" are truly NT and not autistics pretending to be "normal" - I suspect that most of the girl autistics are doing just this.

We will also require a objective test method - weather or not you are diagnosed autistic or not may be more do to the doctor that made the decision then any presentation of "symptoms".

To be able to match numbers over time the only variable that can change is time. In that there are not set standards for diagnosing autism there can be no way to hold all the other factors fixed over time or even to know how much change to allow for over time.

We have not even touched on the very strong likely hood that what is termed Autism may well be several different conditions, personality traits and illnesses being confused with one another for lack of any real understanding of what we are dealing with.


The term autistic was created by people in the psychiatric profession to assess individuals with limits in brain function by identifying and measuring behavioral impairments. It is whatever the psychiatric profession says it is, because they have the power in determining what the criteria is that describes the constructs of the the condition.

One might consider that the individuals in the field of research science are often those with autistic traits, so to suggest that they don't understand how to design the methodology to test statistics properly, is not likely an argument against so called people with typical neurology and "their way of thinking".

To properly assess the limitations of the study one must first fully understand the study in question. The CDC whom funded this study through third party peer reviewed independent research, has also funded studies that assess the strengths, limitations, and areas of improvement that need to be made.

While there is evidence that the numbers assessed for Autism in the US, could go down below 1 in 50 if all individuals were assessed with current criteria, there is also research that suggests that the new DSM5 criteria for ASD that reduces potential criteria combinations in diagnoses for ASD's from over 2000 possible criteria combinations to 11, may eventually reduce the number of new diagnoses, in the US, by close to half.

The CDC is only measuring those more severely impacted by autism in classes for the developmentally delayed, so those statistics are the ones most likely to approximate the future picture of autism statistics once the DSM5 has been in effect long enough to actually impact the methodology used in the demographic of 8 year olds in classes for the developmentally disabled, receiving support services; as well as their new statistics planned for the demographic of 4 year olds.

This new demographic will be integral in understanding the prevalence of ASD, now that the DSM5 has revised a mandatory requirement that symptoms of ASD, in all diagnosed cases assessed with the DSM5 criteria, must be present in early childhood,

http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6103a1.htm?s_cid=ss6103a1_w

Quote:
Limitations
The data provided in this report are subject to at least two limitations. First, increases in awareness and access to services have improved the ability of the ADDM Network to identify children with ASD over time, and this likely contributes to the increase in estimated prevalence. The proportion of the increase that is attributable to such changes in case ascertainment or attributable to a true increase in prevalence of ASD symptoms cannot be determined. Ongoing monitoring is an important tool to learn why more children are being identified with ASDs and can provide important clues in the search for risk factors.

Second, the surveillance areas were not selected to be representative of the United States as a whole, nor were they selected to be representative of the states in which they are located. Limitations regarding population size, surveillance areas, and the consistency of these attributes were considered when analysts evaluated comparisons across multiple time points. Although the two ADDM sites reporting the highest prevalence estimates in 2008 also reported among the highest prevalence estimates in 2002, the most recent results from New Jersey and Utah are based on subregions of their 2002 surveillance areas, with smaller populations compared with those areas and with most other ADDM sites. The estimated prevalence in these subregions possibly was influenced by factors unique to these smaller communities and might not reflect the number and characteristics of children with ASDs in the larger areas covered by these ADDM sites in 2002. Similarly, five other ADDM sites covered different surveillance areas in 2008 compared with 2002 and/or 2006. Although comparisons with earlier surveillance years were carefully restricted to comparable surveillance areas, caution is advised when interpreting results. For example, the addition of one North Carolina county in 2008 resulted in a nearly 15% increase in the overall prevalence of ASDs in that site compared with their findings when this new county was excluded from the prevalence estimate. Although this county was excluded from calculations when the 2008 results were compared with those from earlier surveillance years, the impact of this single county highlights the relative differences across subregions of any given ADDM site.

Future Analyses to Address Limitations
For differences in ASD prevalence, across sites and within subregions of each site to be understood better, further exploration of geographic variation in multiple contextual and potential risk factors is needed. This involves in-depth analysis of known characteristics in the population of children identified with ASDs (e.g., intellectual ability, SES, and birth characteristics), as well as geographic differences affecting the population as a whole. These results point to a need for geospatial analyses of both physical and social environments, including occupational and socioeconomic characteristics of the population, state policy differences potentially affecting access to services (e.g., insurance reform, per capita educational spending, and immigration policy), and geographic differences in environmental exposures that potentially might affect neurodevelopment.

Another important consideration for future analyses is the changing clinical definition of ASDs over time. Although the ADDM methods have always been based on the DSM-IV-TR (1) diagnostic criteria, proposed changes to the definition of Autism Spectrum Disorder in the forthcoming revised Diagnostic and Statistical Manual of Mental Disorders (DSM-5) might affect prevalence estimates and complicate temporal comparisons (19). The proposed revised diagnostic criteria for Autism Spectrum Disorder would combine three subgroups currently under the DSM-IV-TR heading of Pervasive Developmental Disorders into one category and might require a child to display more pronounced symptoms to receive a diagnosis. Because the ADDM methods include information on a broad range of symptoms, the ADDM Network is well-positioned to adopt the proposed DSM-5 definition into its ongoing study and, at the same time, obtain comparison estimates based on the DSM-IV-TR definition. CDC and ADDM Network investigators are exploring the data to understand how the proposed changes might affect the current prevalence estimates and will continue to prioritize these comparisons so as to understand trends better over time. This information is crucial to increasing knowledge of this complex spectrum of behaviors.


Quote:
Ongoing Efforts
Although multiple factors influence the identification of children with ASDs and differences in prevalence estimates across sites, the data provided in this report indicate the need for further exploration of possible associations between overall ASD prevalence and improved identification among children without intellectual disability, children in all racial/ethnic populations, and both males and females, including potential interactions between these factors. ADDM Network investigators continue to explore a broad variety of potential risk and ascertainment factors to understand differences in ASD prevalence estimates between sites and over time.

With 5 surveillance years completed to date, and data collection underway for the 2010 surveillance year, the ADDM Network has compiled extensive data on the prevalence and characteristics of ASDs and other developmental disabilities. These data cover large populations for obtaining prevalence estimates and provide depth and breadth of information on topics not captured in national health surveys. The ADDM record-review methodology enables reporting of data on intellectual ability, specific ASD subtype diagnosis and educational classification, within- and between-state comparisons, and linkage to other datasets for exploration of potential risk factors such as birth characteristics and socioeconomic disparities as well as examination of health services utilization. Currently, the ADDM Network is collecting information on children who were aged 8 years in 2010 and for the first time also is monitoring ASDs among children aged 4 years. In 2012, ADDM sites will begin collecting information for the 2012 surveillance year.


Can you identify any flawed areas of this assessment of methodology per limitations of the study that provided the 1 in 88 statistic, direction for the future research, or provide any suggestions for improvement?

This is a link below to the full study that provided the 1 in 88 statistic, that was assessed above, and is included as well within the text of the study summary.

And by the way it is highly unlikely that the 8 year old girls specific to the demographic of this study were pretending to be autistic.

The levels of intellectual disability measured among the girls in these demographics were signifcantly higher than the males, as well as outnumbered by males at a close to 5 to 1 ratio. Per examples like Alabama where 1 in 909, 8 year old females, were measured as diagnosed with an ASD, per that data collection site.

The study below is highly enlightening on many areas of the issue. Worth every penny of funding and effort that resulted in the findings from the study.

However, it is not worth much, if one does not read and gain knowledge from the information provided, other than the end result of the 1 in 88 statistic, which in itself provides no information on pertinent details of the research, or the methodology in how the statistic was gained. At best by looking at the statistic, by itself, all one can do is make a wild guess as to the validity of it.

http://www.cdc.gov/mmwr/PDF/ss/ss6103.pdf



LennytheWicked
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07 May 2012, 3:15 pm

aghogday wrote:
There is actually less than 40% of the children in these programs statistically measured by the government measured with IQ's at lower than normal levels.

Unfortunately, I've noticed.

[To clarify I find special education for those with average or above average intelligence highly redundant except in the case of having an IEP; the time spent in that classroom was simply wasteful. I want those hours back and I'll never get them back.]

Quote:
The 500,000 number provided by the government are those children more severely impacted by their symptoms, that are projected not to fully be able to provide self-care for themselves, to gain independence in life.


I find this confusing and hard to understand; could you reword it? At present I am taking it as, "First, they took people who had IEPs and only people who had IEPs for this statistic," but then a later restatement of, "They only use people who are very low functioning who also have IEPs." But the last one doesn't make any sense, because no statistician will run around a bunch of special ed classrooms looking for the lowest-functioning students to include.



aghogday
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07 May 2012, 5:26 pm

LennytheWicked wrote:
aghogday wrote:
There is actually less than 40% of the children in these programs statistically measured by the government measured with IQ's at lower than normal levels.

Unfortunately, I've noticed.

[To clarify I find special education for those with average or above average intelligence highly redundant except in the case of having an IEP; the time spent in that classroom was simply wasteful. I want those hours back and I'll never get them back.]

Quote:
The 500,000 number provided by the government are those children more severely impacted by their symptoms, that are projected not to fully be able to provide self-care for themselves, to gain independence in life.


I find this confusing and hard to understand; could you reword it? At present I am taking it as, "First, they took people who had IEPs and only people who had IEPs for this statistic," but then a later restatement of, "They only use people who are very low functioning who also have IEPs." But the last one doesn't make any sense, because no statistician will run around a bunch of special ed classrooms looking for the lowest-functioning students to include.


Per the actual study that arrived at the 1 in 88 statistic, about a third are identified with intellectual disability, about a third with border line intellectual disability, and a third with normal to above measured intelligence levels, per the classes for the developmentally disabled. Some will gain independence in life but longitudinal studies suggest that the overwhelming majority will require support in adulthood. There are studies that provide evidence that 80 to 90% of adults with autism spectrum disorders are not able to independently care for themselves in life.

Unfortunately, as you identify, some individuals are placed in classes for the developmentally disabled, whom might be better off in mainstream classes.

The article below discusses the issue.

http://www.freep.com/article/20120425/NEWS06/204250376/Lack-of-state-services-for-aging-autistic-makes-adulthood-like-falling-off-a-cliff-?odyssey=tab%7Cmostpopular%7Ctext%7CFRONTPAGE

Quote:
Schools across the state have programs for kids with autism starting as young as 3 and going as far as 26, depending on their needs.

But that support ends once they are out of school. Most of those aging into adulthood will find an alarming lack of services designed to help transition into the next stage of their lives. An estimated 500,000 kids in the U.S. with autism will turn 18 within the next five years -- more than 5,000 of them in Michigan.

"It's like falling off a cliff," said Kathy Sweeney, director of OUCARES, the Oakland University Center for Autism Research, Education and Support.

Without continued assistance into adulthood, those with autism are likely to regress and lose some of their hard-won verbal and social gains, according to a 10-year study published this year by Washington University.



MrPickles
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09 May 2012, 4:27 am

aghogday wrote:
MrPickles wrote:
This is a classic case of Headline mongering and scare tactics based on a worthless number!

when the dust settles I suspect that if you count everyone on the spectrum to lead to a count somewhere in the range of 1:20 or even a bit lower. After all we have not even begun to count those that are barley on the spectrum. Nor do we have any any standards for deciding just how far along the spectrum you must be to counted - so - the count will continue to grow as time goes as time passes.

This is a classical problem of NT thought process - there is no standardized set of requirements for diagnosis or inclusion - so the sloppy thinking of most NTs will not able to differentiate between someone that is just enough autistic to qualify as autistic now and someone just short of the required amount of autistic features to qualify at present. So they will soon start including more people as autistic and will again panic about the number of autistic people growing without realizing that the only change was that they moved the line.

People - if you are going to use statistics you must have a fixed set of rules for generating the statistics or you just have worthless crap and numbers that are meaningless.

The 1:88 ratio does not have any basses in fact. Nor can we make any connection to any other ratio number from the past.

To be valid we need to have a means of knowing that all the "normal people" are truly NT and not autistics pretending to be "normal" - I suspect that most of the girl autistics are doing just this.

We will also require a objective test method - weather or not you are diagnosed autistic or not may be more do to the doctor that made the decision then any presentation of "symptoms".

To be able to match numbers over time the only variable that can change is time. In that there are not set standards for diagnosing autism there can be no way to hold all the other factors fixed over time or even to know how much change to allow for over time.

We have not even touched on the very strong likely hood that what is termed Autism may well be several different conditions, personality traits and illnesses being confused with one another for lack of any real understanding of what we are dealing with.


The term autistic was created by people in the psychiatric profession to assess individuals with limits in brain function by identifying and measuring behavioral impairments. It is whatever the psychiatric profession says it is, because they have the power in determining what the criteria is that describes the constructs of the the condition.

One might consider that the individuals in the field of research science are often those with autistic traits, so to suggest that they don't understand how to design the methodology to test statistics properly, is not likely an argument against so called people with typical neurology and "their way of thinking".

To properly assess the limitations of the study one must first fully understand the study in question. The CDC whom funded this study through third party peer reviewed independent research, has also funded studies that assess the strengths, limitations, and areas of improvement that need to be made.

While there is evidence that the numbers assessed for Autism in the US, could go down below 1 in 50 if all individuals were assessed with current criteria, there is also research that suggests that the new DSM5 criteria for ASD that reduces potential criteria combinations in diagnoses for ASD's from over 2000 possible criteria combinations to 11, may eventually reduce the number of new diagnoses, in the US, by close to half.

The CDC is only measuring those more severely impacted by autism in classes for the developmentally delayed, so those statistics are the ones most likely to approximate the future picture of autism statistics once the DSM5 has been in effect long enough to actually impact the methodology used in the demographic of 8 year olds in classes for the developmentally disabled, receiving support services; as well as their new statistics planned for the demographic of 4 year olds.

This new demographic will be integral in understanding the prevalence of ASD, now that the DSM5 has revised a mandatory requirement that symptoms of ASD, in all diagnosed cases assessed with the DSM5 criteria, must be present in early childhood,

http://www.cdc.gov/mmwr/PDF/ss/ss6103.pdf


Yes - the terms Asperger's and Autistic were defined by professionals in the field. The DSM standards are set by committee though - and I will guarantee you that the vast voting majority were in fact NT and not on the spectrum. Having been on similar committees as the only Asperger's on the committee I often found myself outvoted and ignored especially when I was insisting on precision over quick and easy. I also know that my experience in this area tells me that changing the terms and definitions does not change me or my mental makeup. It may be time that we move beyond the "mental health establishment" and build our own set of terms and definitions and work towards something that is both carefully and precisely defined and will include all of us on the spectrum as well as define or position on the spectrum. Maybe we should stop letting others define us.

I stand by my statement that the 1:88 ratio number is worthless - once it was removed from its study and talked about as though it has some validity of its own it became worthless - it was no longer based on any factual data at all. Weather or not the actual study has any value in the real world was not touched on by my comments as that was not the point of my post. I was speaking to the validity of the number as it was being used in the popular press.

As for the wonderfully exact standards the CDC sets for studies it sponsors I do remember that up until just a very few years ago the the entire medical community of the world held that you got ulcers from worrying too much or you were too nervous. That the only effective treatment was counseling and antacids. They even had many fine CDC sponsored peer reviewed studies showing this worked better than anything else. It took a lowly physician in the outback of Australia who talked to the local veterinarians to prove that ulcers were caused by a simple infection and could be fully cured by antibiotics. The reason for this failure was simple - All the doctors had it in their mind that they were right and therefore would not look elsewhere for the answer and that they had inadvertently included a couple of other conditions with ulcers that further confused the issue.

One last point - before everyone runs off screaming "NT Basher" I would like to make one very important point - Asperger's have their own mental flaws - If we really want to cover any subject well and come up with the best solutions from a committee we should build our committees with a balance of minds and accept a wide an input as possible into the decision process in hopes of by passing all of our flaws as much as possible.