The Broader Amish Autism Phenotype vs. The Autistic Matrix

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Which way of life is more Advantageous?
A "Broader Amish Autism Phenoytype" 24%  24%  [ 4 ]
An "Autistic Matrix" 29%  29%  [ 5 ]
Other, Please Comment. 47%  47%  [ 8 ]
Total votes : 17

aghogday
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14 Apr 2013, 1:31 am

A recent discussion here inspired me to share some thoughts on my blog that some here might find interesting. It is long if anyone cares to wade through it.

In respect to the poll I have attached, "The Broader Amish Autism Phenotype" is what I am describing in the post below, as a way of life the Amish live that might be easier for some on the spectrum to adapt to in life.

"The Autistic Matrix", is a way of life online that has become community for some on the spectrum.

The Poll asks the question which way of life one thinks is more Advantageous

The discussion here that inspired the post, was one on an offline "Autistic Country", some were hoping to find in the future.


The "Broader Amish Autism Phenotype" vs. "The Autistic Matrix":

There is a 1 in 271 prevalence of Autism Spectrum Disorders reported in two Amish Counties in a door-to-door screen, from preliminary results of a study in 2011, as opposed to the 1 in 50 prevalence in the rest of the US, from a phone survey of parents for children actually diagnosed, a recent study supported by the CDC.

https://imfar.confex.com/imfar/2010/web ... r7336.html

http://www.cdc.gov/nchs/data/nhsr/nhsr065.pdf

Autism is diagnosed as not only symptoms characteristic of the condition, but also as one that impairs one in a major area of life functioning. Acceptance is an ongoing issue in daily life that changes by the moment depending on who one is dealing with.

One cannot demand acceptance from one that chooses not to provide it, except when there are carrots and sticks that others yield to in response. People often act as if they accept their supervisors or other authority figures, but it does not mean they feel that way inside.

I suspect that people on the spectrum are more likely accepted by others, in Amish Counties and contribute greatly to society, as there is often enough to do to keep everyone busy for basic survival. Along with enough social roles to fill in a close knit society.

People in Amish Counties often do not do well in the larger world when they leave there to join the rest of the world.

It is more likely the social stress of the larger world, which makes characteristics on a much broader autism phenotype, 30 to 45 million people just in the US, observed in every country and small culture in the world, a diagnosis in some cultures verses a continued broader autism phenotype in others.

It is also potentially part of the reason that some folks, who are being diagnosed at 40 now, would likely be diagnosed at 20 now if born 20 years later because the social demands of this fast paced chaotic culture, now exceed capacity for fuller social adaptation.

People do not usually get a diagnosis, unless they are having substantial problems adapting. They often remain on that broader autism phenotype.

The DSM5 now defines Autism as symptoms of a broader autism phenotype that occur in early childhood but may not fully manifest as symptoms of an actual diagnosed condition until social demands exceed social adaptation.

Every child, later diagnosed with Autism, starts on a broader autism phenotype first.

There can be many associated factors that lead to the actual diagnosis, including superficial issues such as how the condition may be defined, how it is subjectively assessed, and awareness and accessibility of health care leading to a diagnosing professional.

I do not think it is practical to use the term Autism for online communities. I like the phrase "neurodiversity communities" as a place where every person who feels "neurodiverse" can feel free to interact with others with an almost unlimited number of neurological differences.

That is already the effective reality anyway, as many people have not made it to the point, where they feel the need or have access to healthcare to move from broader autism phenotype to actual diagnosis.

That is as long as everyone is welcome, as is the case most often on some websites, like the Wrong Planet website, where people do not find themselves in the same larger world trap of unspoken political/social ideologies they are not accepted for unless they comply and conform.

I think in Amish counties, overall, it is an issue of effective opportunity for and resulting social adaptation, which is often associated with acceptance from others.

I think that overall that is what all social animals look for in life. I do not generally observe people on the spectrum as anti-social animals.

I think it is possible to legislate greater opportunities for social adaptation through employment and laws like the ADA. However, acceptance more often depends on social adaptation, which does not necessarily mean being a "social butterfly", as much as finding an environmental niche in a role to play as some type of contributing player.

People are having a harder time adapting, so overall society is not working, as it should, at least for those who are having trouble adapting.

Things are getting better for those most severely impacted by co-morbid medical conditions, but that is only a piece of the overall adaptation pie that exists from birth to death. The other pieces do seem to be harder to find for some now than they used to be.

The result of that is the expansion of people identifying with Autism as a source of online acceptance. That expansion currently, is not effectively inclusive enough for everyone looking for that acceptance on a much broader autism phenotype or what others refer to as "neurodiversity".

This is a potential source of conflict that exists between some parents of children on the spectrum and other people identifying on a spectrum. They are most often on the same team of a broader autism phenotype, and at times cannot clearly see that commonality, in each other.

Additionally, they are most often looking for the same thing for themselves, support and acceptance. That will probably eventually change for the better online, as the basic opportunity for social adaptation and acceptance in the "real world" does not appear to be moving in a positive direction.

The Sequester is near evidence of that future. So is increasing avenues of online participation among those identifying with Autism as not just a diagnosis, but also a way of life.

I think it is unfortunate the potential reasons why the prevalence rate of Autism is much lower in Amish counties cannot be fuller explored by research, because, at least in part, it has become politically incorrect to do so, over the unwarranted vaccine concerns.

I think this type of research could go a long way in helping people on the spectrum. I provided that comment in the last congressional oversight hearing, as a written one, but the results of that hearing in the continued focus on unwarranted mercury fears, continues to drown some of the valid concerns and efforts that could potentially help people now.

I believe that offline connections, which do not currently do well past support groups in large cities, are the first step to a larger "real life" community of people on the spectrum. However, I think that part of the reason that the offline connections do not happen, is because the opportunity for online ones continue to expand dramatically.

In addition, this certainly is not an issue specific to people on the spectrum.

Most ironically, it could be part of the overall issue of what leads to a diagnosis in the real world for some, moving from that broader autism phenotype to a diagnosed spectrum.

It is in some ways potentially a "catch 22" situation.

I had offline connections with people on that broader autism phenotype through most of the course of my life through school and work.

There were no labels then, however as I look back those people were always there. Those same opportunities I had in my historical field of work I could depend on with job security no longer exist.

For many reasons, my field of work was a magnet for people on that broader autism phenotype that one could observe nationwide. Effectively, my workplace was a "Neurodiversithy Community".

One of my co-workers did the "flapping stim", where my "stim" was a religious routine of vigorous exercise.

I never made the connection in his "flapping" and my exercise routine until it was pointed out as a “stim” that some people on the spectrum share.

There is no description of "flapping" in any diagnostic manual. The only place one can usually find a description is in online autism communities. Alternatively, as was in my case, a real life observation in my "Neurodiversity Workplace".

I never came across anyone "flapping", in school that I can remember.

The people have not changed that much but the opportunity for "Stims" has. The idea of sitting still was horrifying to me in the workplace, behind a desk job, as I was hyperactive, now identified as ADHD.

I might have eventually "flapped" too, as when I was finally trapped behind a computer; I had to do push-ups to release frustration and tension, and eventually succumbed to problems with hypersensitivity to light and sound.

In trying to explain that to an elder co-worker, also obviously on a broader Autism phenotype, her response was stress does weird "s**t" to you.

There is now research that shows dysfunction of the stress response and adrenaline associated neuro-hormones, is associated with sensory integration problems.

I think this is part of the issue for people who are young that are under a level of chronic stress that I cannot imagine in a rural town, with a short walk to a small school, without even stimulation from a TV set.

For all practical intents and purposes, I grew up in something similar to an Amish County, and my ancestors more so.

That is how culture used to be for thousands of years.

People were closer to the earth in hunting and gathering, and/or agriculture. The old order of "Agri" Culture is in many ways like Amish Culture.

Some of the answers seem blatantly obvious to me because I have experienced so many different perspectives in just one life.

People now are often born in to an environment of one full serving of cultural complexity on one plate. The yearning for a place where people can successfully adapt is at the crux of many of the problems of modern civilization, I think, and again this is certainly not an issue specific to Autism.

However, I do think that people on the spectrum are among the effective "Canaries in the Coal Mine", per inherent propensity toward these greater difficulties in this type of new required social/environmental adaptation.

In this event, not a noxious gas or vaccines are the offender.

It is a way of life, at least in part, that people are attempting to escape that they are "virtually" trapped in, per "Catch 22", in what is becoming an effective life that is "Matrix", in nature, for some.


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14 Apr 2013, 2:08 am

Quote:
It is also potentially part of the reason that some folks, who are being diagnosed at 40 now, would likely be diagnosed at 20 now if born 20 years later because the social demands of this fast paced chaotic culture, now exceed capacity for fuller social adaptation.

People do not usually get a diagnosis, unless they are having substantial problems adapting. They often remain on that broader autism phenotype.


I got hung up on this. It seems to me that you're saying that people only get diagnosed when they start having problems, but I don't think this is true. Many people receive no diagnosis as children despite having many problems, because these problems are assumed to be other things, or because the parents are in denial, or whatever reason. I get the sense that the presentation here is entirely too tidy.

I also think that creating a "neurotypical/neurodiverse" dichotomy is incorrect. Neurodiversity acknowledges that there's more than one type of neurology, it doesn't set some neurology aside as diverse and some not. That's what "neuroatypical" is for.



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14 Apr 2013, 2:59 am

Verdandi wrote:
Quote:
It is also potentially part of the reason that some folks, who are being diagnosed at 40 now, would likely be diagnosed at 20 now if born 20 years later because the social demands of this fast paced chaotic culture, now exceed capacity for fuller social adaptation.

People do not usually get a diagnosis, unless they are having substantial problems adapting. They often remain on that broader autism phenotype.


I got hung up on this. It seems to me that you're saying that people only get diagnosed when they start having problems, but I don't think this is true. Many people receive no diagnosis as children despite having many problems, because these problems are assumed to be other things, or because the parents are in denial, or whatever reason. I get the sense that the presentation here is entirely too tidy.

I also think that creating a "neurotypical/neurodiverse" dichotomy is incorrect. Neurodiversity acknowledges that there's more than one type of neurology, it doesn't set some neurology aside as diverse and some not. That's what "neuroatypical" is for.


Sorry, my communication was not clear, that was not my intention in it. I agree with your assessment that many people receive no diagnosis as children despite having many problems and are often misdiagnosed.

There was a presentation by a women from another country, in the recent Inter-Agency Autism Coordinating Committee meeting, IACC, that denial was a substantial problem in gaining diagnosis, where one spouse was in denial and the other was not. I think that is also a reasonable concern and reality in some cases.

However, I think it is reasonable, and supported by DSM5 Criteria, that children or adults who are not having problems adapting to the social environment usually are not assessed with a diagnosed ASD disorder. Even if symptoms are present not fully manifesting as observed clinical impairments earlier in childhood.

I think you and I both, in the past, have agreed that neurodiversity consists of many neurologies. Whereas, the "Neurodiversity Movement", in part, is defined in Wiki as a political ideology.

I do not consider a "Neurodiversity Community" one specific to any political ideology such as people who are anti-cure vs pro-cure.

My definition of "Neurodiversity Community" is specific to respect among others for their commonalities and differences in neurology without regard to diagnostic label. I personally do not see labels in other people. I see neurodiversity and always have. However, that is my personal ideology, not one that I would expect anyone else to share.

I did not use the word neurotypical at all, as there is often a point of disagreement on what it means and some find the word offensive. However, I do not personally find it offensive.

I do not particularly personally care for that term, but I have always liked the term Neurodiversity in it's more inclusive form, outside of the political ideology of the "Neurodiversity Movement". :)

"Neurodiverse" people, including those officially diagnosed on the spectrum, are excluded out of participation in "Neurodiversity Movement Activities", based strictly on ideology on issues such as supporting a cure ideology for those on the spectrum that seek cures for difficult symptoms associated with Autism. Even if they do not seek cures for themself.

In my personal opinion that defeats the whole purpose of anyone suggesting they are seeking overall acceptance for people on the spectrum, in a "neurodiversity movement"

The informal polls done here show support in about a third of the people for others on the spectrum that seek cures for symptoms they personally think are difficult enough to warrant that hope. Those are often the people that need these online "Neurodiversity Communities" the most.

It is good they can find that type of support on this website, because some of those people hoping for cures for difficult symptoms they assess in themselves or support for others, could be bullied by other people suggesting they are on a spectrum in some other online autism communities. I've seen that happen many times, on other websites.

I've never hoped for cures of my challenges associated with the spectrum, but I found ways to adapt on my own, that effectively were cures for symptoms I otherwise would not have been able to tolerate easily.

For example, vigorous exercise as a "stim", to stay focused and relatively calm. Among other adaptations like playing the piano and singing in Church (when I went when I was younger) to better connect with my emotions and better communicate emotions to others in speech.

Recent research is finding that singing therapy and tapping drums is enhancing verbal speech among the minimally verbal, in positive results in gaining words for communication. I was not at all surprised. :)

I was also encouraged, when this new therapy was presented in the recent IACC, committee hearing, and Autism Speaks was lauded by an individual that is often against any Pro Cure ideology, active in what is often described as a "Neurodiversity Movement"

The Modern Medical Definition of the Word Cure, includes remediation of symptoms, and this is how the Autism Speaks organization has defined it for some time now. Others are finally appreciating the results of the marketing efforts they may disagree with, at times.

The good thing about that is the future potential of online autism/neurodiversity communities, overall, to be friendly places for more people on the spectrum to visit, as points of compromise on political ideology grow.


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14 Apr 2013, 4:54 am

"It is more likely the social stress of the larger world, which makes characteristics on a much broader autism phenotype, 30 to 45 million people just in the US, observed in every country and small culture in the world, a diagnosis in some cultures verses a continued broader autism phenotype in others.

It is also potentially part of the reason that some folks, who are being diagnosed at 40 now, would likely be diagnosed at 20 now if born 20 years later because the social demands of this fast paced chaotic culture, now exceed capacity for fuller social adaptation."

Spot on. Even mild adaptive problems call for a diagnosis nowadays, - at least for those, who have them, because of this social pressure. Social animals need security and acceptance, and if not granted, - at least coherent explanation, and introversion in itself has autistic qualities.


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14 Apr 2013, 9:24 am

By other, I mean I want results.


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naturalplastic
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14 Apr 2013, 10:20 am

Verdandi wrote:
Quote:
It is also potentially part of the reason that some folks, who are being diagnosed at 40 now, would likely be diagnosed at 20 now if born 20 years later because the social demands of this fast paced chaotic culture, now exceed capacity for fuller social adaptation.

People do not usually get a diagnosis, unless they are having substantial problems adapting. They often remain on that broader autism phenotype.


I got hung up on this. It seems to me that you're saying that people only get diagnosed when they start having problems, but I don't think this is true. r.


Absolutely.


I was diagnosed in my fifties, not because im 'starting' to have problems, but because I had problem all my life. The reason for the delay in the dx was because none of the dozen shrinks Ive ever had had ever even HEARD of aspergers.

The diagnosis did not even exist until around the year 2000 (atleast in anyplace outside of Austria). And even after that year most mental health workers in America were too incompetent to know about it.

People over 40 are not getting dx'd because 'society is changing' - we in that group are getting dx'd because we always had problems, but there was no label for it for most of our lives.

So that line in the OP is seriously stupid.

To repeat: 20 years ago the category of aspergers didnt even exist- so that was why NO ONE in the USA was dxd with it then.



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14 Apr 2013, 11:12 am

Pardon me if I'm stating the obvious, but the hypothesis offered is that: Higher social demands of modern life lead to a higher rate of autism diagnosis.
Hence, a lower rate of diagnosis amongst the Amish as fewer of them are unable to meet social demands necessary for acceptance.

To address your poll, BAAP vs TAM. I don't see a huge advantage to either. They both have their drawbacks. Composing ones life of face to face, virtual, and "nature" interactions is the most satisfying in my opinion. You have to find the balance of these that suits your personality*.

The choice I see is between a society with more rigid roles and expectations or one that offers more choice. I'll take the latter. The cultural revolution of 1960s was a good thing. There is a certain irony in the idea that by promoting diversity and acceptance we have actually made it more difficult for people to find their niche in the real world.

*By personality I mean all of your traits, quirks, sensory limitations, etc...


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14 Apr 2013, 5:33 pm

Jensen wrote:
"It is more likely the social stress of the larger world, which makes characteristics on a much broader autism phenotype, 30 to 45 million people just in the US, observed in every country and small culture in the world, a diagnosis in some cultures verses a continued broader autism phenotype in others.

It is also potentially part of the reason that some folks, who are being diagnosed at 40 now, would likely be diagnosed at 20 now if born 20 years later because the social demands of this fast paced chaotic culture, now exceed capacity for fuller social adaptation."

Spot on. Even mild adaptive problems call for a diagnosis nowadays, - at least for those, who have them, because of this social pressure. Social animals need security and acceptance, and if not granted, - at least coherent explanation, and introversion in itself has autistic qualities.


Thank you for bringing up the point on introversion. It can be difficult to parse out what some people describe as Autism from Introversion. The association of Introverted Personality Traits are clear. In the Myers-Briggs Informal Poll done on this website, from 1500 responses, over 95% report Introverted Personality Traits.

More interesting is that 51% report 2 specific Introversion types of INTJ and INTP, at 34% and 17%, respectively. Those two personality types are identified in the general population among uncommon personality types representing an estimated 5.4% per the link below from the Myers-Briggs Foundation.

http://www.wrongplanet.net/postt67764.html

The challenges and strengths of people who are on an introversion scale discussed in the Time magazine article linked below, sounds remarkably similar to what is discussed in online "Neurodiversity Communities". There are also some online specific "Introversion Communities" where similar concerns are voiced.

http://www.time.com/time/magazine/artic ... 32,00.html

As discussed in the Time article research has identified 20% of infants assessed as highly reactive to their environment maturing into more inhibited, introverted teenagers.

Additionally, studies conducted with FMR imagers found that the amgdalae in the brains of those original high-reactive infants, followed into adulthood through this longitudinal study, tend to light up when they are shown pictures of unfamiliar faces.

There is substantial evidence that personality traits of introversion are influenced by neurological differences and environmental factors. It would be hard to justify and exclusion of introversion from what is generally described as neurodiversity.

The elements of identified "autistic-like traits" assessed in the Autism Quotient test as a Broader Autism Phenotype are similar to the general traits of Introversion discussed in the Time magazine article.

It is clearly identified in the Time magazine article that those with strong traits of Introversion are more vulnerable to the Social Stress of our "Extroverted" oriented culture, which is full of the type of Stimuli that those who are Introverted cannot as easily tolerate or adapt to.

Moreover, this highly-reactive state of neurological existence in infants has also been identified consistently at 20% across the animal kingdom among those newly born animals identified as the Sitters vs. the Rovers, illustrated well in the article linked below:

http://www.nytimes.com/2011/06/26/opini ... wanted=all

One cannot administer an Autism Quotient test to the rest of the animal kingdom, but the behavioral differences can be observed and empirically measured.

It is clear that there is a neurological foundation as to why some people in our culture are having a more difficult time adjusting to the amount of social/environmental stimuli, increasing as time goes on.

It is also clear that it is not an issue that is specific to people actually diagnosed on the Autism Spectrum extending out into what some describe as a Broader Autism Phenotype, Neurodiversity, Sitters vs. Rovers, or among those people that most people can identify as individuals that have substantial traits of Introversion.

The DSMIV, from 1994 to the year 2000, through an unfortunate editorial error described the PDDNOS Autism Spectrum Disorder loosely enough where clinically signifcant RRBI's alone, as one general criterion, were technically enough to meet diagnostic requirements.

That editorial error was corrected in 2000, to assess PDDNOS as 2 out 3 Criterion where clinically significant impairments in Social Interaction were mandatory and one additional Criterion of clinically significant impairments in non-verbal communication or verbal communication or RRBI's were required for diagnosis.

Chronic Social or Environmental Stress over time can result in RRBI type behavior among most animals. That is certainly not an Inherent specific issue. That phenomenon has been observed and measured in numerous human animal and other animal studies.

The difficulties in Social Interaction are not clearly identified or described as Criterion elements in the DSMIV Social Interaction Criterion.

At least to date, it is likely that the DSMIV has been capturing a significant amount of stress response to the increasing demands of adaptation in Social and Environmental Stimuli in the last couple of decades.

One cannot easily separate the factors of more loosely defined diagnostic criteria, propensity of vulnerability to stressful Social/Environmental stimulus, or increasing cultural social/environmental stresses of stimuli over time out of the total equation.

However, I think that all these factors together may warrant additional consideration of the topic at hand.

The parameters of what is much more restricted in mandatory Criterion elements in the DSM5 will likely change the face of what is actually diagnosed as ASD in the coming decade.

However, the problems that currently exist for people as a result of not being able to adapt to the social environment and the warranted need for appropriate support for adaptation is not going away, regardless if there is a label for what is or not.


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14 Apr 2013, 7:20 pm

naturalplastic wrote:
Verdandi wrote:
Quote:
It is also potentially part of the reason that some folks, who are being diagnosed at 40 now, would likely be diagnosed at 20 now if born 20 years later because the social demands of this fast paced chaotic culture, now exceed capacity for fuller social adaptation.

People do not usually get a diagnosis, unless they are having substantial problems adapting. They often remain on that broader autism phenotype.


I got hung up on this. It seems to me that you're saying that people only get diagnosed when they start having problems, but I don't think this is true. r.


Absolutely.


I was diagnosed in my fifties, not because im 'starting' to have problems, but because I had problem all my life. The reason for the delay in the dx was because none of the dozen shrinks Ive ever had had ever even HEARD of aspergers.

The diagnosis did not even exist until around the year 2000 (atleast in anyplace outside of Austria). And even after that year most mental health workers in America were too incompetent to know about it.

People over 40 are not getting dx'd because 'society is changing' - we in that group are getting dx'd because we always had problems, but there was no label for it for most of our lives.

So that line in the OP is seriously stupid.

To repeat: 20 years ago the category of aspergers didnt even exist- so that was why NO ONE in the USA was dxd with it then.


Hopefully, I adequately addressed most of the points you are making here in my last post.

My suggestion is not one that the inherent problems or propensity toward problems of adaptation do not exist. That seems clear even among individuals with substantial traits of introversion, discussed in detail in the Time Magazine article on Introversion, I linked in the previous post.

One person's stress is another person's pleasure where the stimulus of social environment and other sources of stimulus in the environment are increased.

Currently, it is also identified in clinical practice that, overall, across what is currently identified as a spectrum, per DSMIV criteria, the majority of individuals are actually hypo-sensitive to the environment and some seek stimulus through "stimming" rather than stimming to focus attention away from other sources of overwhelming stimulus.

It is also worth noting that online Autism Communities, such as this community and many others are far from representative from all the different identified Autism Subgroups that exist. The results I linked from the Myers-Briggs Informal Poll are restricted to that limitation.

There are likely relatively few of those responses coming from individuals clinically sub-typed among the 25% of individuals with Regressive Autism in Childhood, the 5% assessed with Fragile X syndrome, the 38% assessed with co-morbid intellectual disability, or even the 24% assessed with co-morbid borderline intellectual disability in childhood.

I agree that if I made the statement you paraphrased from my quote below that "People over 40 are not getting dx'd because 'society is changing' ", it would not be a reasonable one but I am not suggesting a universal phenomenon for all people on the spectrum.

I am suggesting that an increasing demand from the social environment is POTENTIALLY having an impact among SOME people currently identified on the spectrum, from the DSMIV Criteria that exists now. The DSMIV has been in effect close two decades now.

That is part of the reason I restricted my suggestion specific to a two decade generational gap, in specifying age 40 vs. age 20, not those individuals over age 40.

Considering factors of new diagnostic criteria and increasing social stress and environmental stress from increasing stimulus and social demands, this would be the generation up to age 20 most likely impacted by an actual diagnosis taking new factors of social environment into account along with more loosely described DSMIV criteria for some type of ASD.

However, I still see a potential impact across the life span.

Quote:
It is also potentially part of the reason that some folks, who are being diagnosed at 40 now, would likely be diagnosed at 20 now if born 20 years later because the social demands of this fast paced chaotic culture, now exceed capacity for fuller social adaptation.

People do not usually get a diagnosis, unless they are having substantial problems adapting. They often remain on that broader autism phenotype.


The Gillberg Criteria adequately captures a neurodevelopmental disorder from Childhood for Asperger's syndrome, because motor development impairments and language development delay and/or speech impairment are mandatory criterion elements.

As described in my last post, the DSMIV does not do that in the more loosely defined and described disorders.

The DSM5 criteria for ASD is more restricted but it still has the potential to capture more environmental influenced factors than the Gillberg Critera because it is based on observed behavioral impairment, rather than inherent issues of motor development impairment and verbal language development and/or speech impairment that will continue to be captured under Gillberg Criteria.

The new "mandatory" requirement of non-verbal impairment, taken to the clinically significant level, instead of common behavior seen in the general population such as looking away when focusing on memory in conversation to avoiding distracting stimulus from the facial expressions of others, is more likely to capture an inherent condition in the DSM5 than what was defined as minimum diagnostic requirements for DSMIV ASD in PDDNOS.

Link on common elements of eye aversion among people on the spectrum and the general population:

http://www.myhealthnewsdaily.com/2321-a ... avior.html

The diagnostic inefficiencies in the current DSMIV criteria and designed assessment tools is described better in the analysis provided in the two links below, than what I have seen from any other Autism Research Scientist or other associated Professional.

http://crackingtheenigma.blogspot.com/2 ... usion.html

http://crackingtheenigma.blogspot.com/2 ... o-get.html

Three out of three instead of two out of four, previously described Social Interaction Criterion Elements now described as Social-Communication Criterion is much more restrictive.

According to the APA representative, Sue Swedo, chair of the DSM5 ASD committee, the three mandatory Social Communication elements are required observed at time of diagnosis, not met by history alone, whereas RRBI's can be met by history alone, no longer necessary as observed clinically significant impairments at the time of diagnosis.

Gillberg Criteria, overall, is still a more restrictive criteria, to meet diagnosis of Asperger's than what the DSM5/APA representative , Sue Swedo, now describes as ASD, in the link below:

http://www.psychiatry.org/practice/dsm/ ... m-disorder

Link to Gillberg Criteria:

http://www.bbbautism.com/asp_gillberg.htm

All that said, as stated at the end of my last post, the substantial problems remain. The needs of appropriate accommodation and support remain.

I do not think the new Social Communication disorder will adequately capture the issues of difficulty some people have that remain that in some cases will also no longer be captured by the DSM5 ASD criteria.

The potential to do further research associated with other cultures like the Amish, capturing the full scale of difficulties, will likely be significantly reduced in the US, after DSM5 criteria goes into effect.

For some time to come, a similar existing potential remains in countries where the ICD10 continues to be used for diagnosis, where criteria is more loosely described.


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14 Apr 2013, 8:18 pm

ral31 wrote:
Pardon me if I'm stating the obvious, but the hypothesis offered is that: Higher social demands of modern life lead to a higher rate of autism diagnosis.
Hence, a lower rate of diagnosis amongst the Amish as fewer of them are unable to meet social demands necessary for acceptance.

To address your poll, BAAP vs TAM. I don't see a huge advantage to either. They both have their drawbacks. Composing ones life of face to face, virtual, and "nature" interactions is the most satisfying in my opinion. You have to find the balance of these that suits your personality*.

The choice I see is between a society with more rigid roles and expectations or one that offers more choice. I'll take the latter. The cultural revolution of 1960s was a good thing. There is a certain irony in the idea that by promoting diversity and acceptance we have actually made it more difficult for people to find their niche in the real world.

*By personality I mean all of your traits, quirks, sensory limitations, etc...


So far, I have provided observations, facts and figures but I haven't provided a personal opinion on what I see as what I as an individual could more inherently and adequately adapt to as far as a "Broader Amish Autism Phenotype" vs. an "Autistic Matrix". My vote in the poll was other.

For me, overall, the avenue for "Autistic Matrix" and technology has been a good friend I needed to help me to survive.

I was not inherently inclined toward a "Physical", "Visual Spatial" life of "Agri" Culture. Motor development issues are a part of that equation, in my case.

If it were not for the avenue of "Autistic Matrix" and computers, I doubt I could have thrived in the workplace as I did or ever produce any type of effective written communication. It could have been the difference for me in living under a bridge verses a marriage and living in a house that is almost paid for.

Part of my challenge was continuing to find the balance, not the avenue for "Autistic Matrix" alone.

I have two maternal cousins who lived in a motor development enhanced and visual spatial skilled world of working in Carpentry and other hands on occupations. They were among those who literally made statements they wished they were born 100 years earlier before computers came alone, not me.

Computers were designed with similar minds to my mind, in mind, not theirs.

We were at polar opposite ends of "knowledge skills and abilities", in the real world.

However, as far as RRBI's, and Social Communication challenges, there was not much that set us apart. We were all very challenged.

I have come across fewer individuals like my two maternal cousins in online Autism Communities, but they exist in large numbers in that Broader Autism Phenotype in the real world.

They are part of the effective 10's of millions of others, that are in a "right brained" world instead of a "left brained world", that at least in part, are more often left out of these online conversations, on these topics of discussion.

As so many others, they are likely focused on survival, where the hands on skills that were once in demand, are no longer close to what they were, for that area of the broader autism phenotype.

It is some of those folks on that broader autism phenotype, who are literally living under bridges that likely could and would be diagnosed under DSMIV or 5 criteria, if they had the awareness, accessibility, and affordability to gain a diagnosis.

That is one advantage of living in a "left brain" world, that some in that "right brain" world may not equally be advantaged in gaining access to.

For clarification, I used "left brain" vs. "right brain", as metaphor not meant as a literal statement of categorical division in knowledge skills or abilities. There does seem to be an association but not a clear line of dominant hemispheric division.


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Last edited by aghogday on 14 Apr 2013, 9:50 pm, edited 1 time in total.

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14 Apr 2013, 8:23 pm

Ganondox wrote:
By other, I mean I want results.


If you mean wanted additional supporting data from me, I think I have provided some of that.

If you mean results from actual cultural studies, per "Amish-like" cultures vs. cultures existing in countries like the rest of the US, I would like to see that too. :)


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15 Apr 2013, 12:20 am

This is a rough crowd, and while I don't always agree with ahogday, I think his point is worth posting, even if I myself am not sure how much I agree/disagree.

I think I'd argue that there really is not a way to test ahogday's theories when it comes to "Amith counties", if for no other reason than that there is no one neurological basis to issue a diagnois of Aspergers. There is a collection of traits, but honestly, if you DXed everyone who met some of those critera, Aspies would be the "Neurotypical".

Would Aspies be socially isolated in a farming culture that is based on family relationships going back (at least) decades...probably less than they are now. Would Aspies be isolated in the working enviroment based on agricultral production and hard work...probably less than in a marketing & sales organization's culture.

Without getting into areas that are more Inventor's domain, ahogday adopting the "amish" as an example might not be completely off the mark.


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15 Apr 2013, 1:42 am

AgentPalpatine wrote:
This is a rough crowd, and while I don't always agree with ahogday, I think his point is worth posting, even if I myself am not sure how much I agree/disagree.

I think I'd argue that there really is not a way to test ahogday's theories when it comes to "Amith counties", if for no other reason than that there is no one neurological basis to issue a diagnois of Aspergers. There is a collection of traits, but honestly, if you DXed everyone who met some of those critera, Aspies would be the "Neurotypical".

Would Aspies be socially isolated in a farming culture that is based on family relationships going back (at least) decades...probably less than they are now. Would Aspies be isolated in the working enviroment based on agricultral production and hard work...probably less than in a marketing & sales organization's culture.

Without getting into areas that are more Inventor's domain, ahogday adopting the "amish" as an example might not be completely off the mark.


Thanks for the response, Agent Palpatine.

At this point in time with the loose criteria that exists, it does seem from the evidence that exists, that prevalence rates of ASD, using the DSMIV diagnostic tools designed to assess ASD, in Amish Counties, are substantially lower. That includes all forms of Autism.

The reasons for that are not clear.

There could be many, but for purposes here I was providing a suggestion of general impact of increased factors of social stress and other environmental factors associated with increased stimulus.

Even, if one were to only assess those general factors with the introverted population, in Amish Counties as opposed to the rest of the country, one might expect some level of measured increased problems in adaptation, per what is already known about that subgroup of the general population, whose introverted traits are shared among a substantial number, if not majority of people on the spectrum, and people on the Broader Autism Phenotype.

As far as Asperger's only, I think a diagnostic tool for Gillberg Criteria, would be interested to use to assess the Amish Prevalence of Asperger's syndrome against the rest of the Country.

That Asperger's diagnostic criteria goes on, after the DSM5 and ICD11 both retire the diagnostic label of Asperger's Syndrome. Currently, in the case of the ICD11beta revision, at this point in time, Asperger's is labeled as the proposed Social Reciprocity Disorder, with no RRBI's as part of that diagnostic criteria.

The Gillberg Criteria itself, is an effective tool to measure a neurological difference, whereas the DSMIV, overall, is not a reliable one per the links and analysis provided above from the "CrackingtheEnigma" website.

Again, at least for me, "Agri" Culture does not appear to be what I was "cut out" for. :) In someways, I wish I was "cut out" for it.


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15 Apr 2013, 1:57 am

Ive always wanted to start a Amish 2.0 community. Its just like the amish with the farming and the horse and carts only with ipads and high speed Internet as well. Its a bit hard to put the concept into words but in my head IT IS TOTALLY AWESOME!!



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15 Apr 2013, 3:55 am

Boogoose wrote:
Ive always wanted to start a Amish 2.0 community. Its just like the amish with the farming and the horse and carts only with ipads and high speed Internet as well. Its a bit hard to put the concept into words but in my head IT IS TOTALLY AWESOME!!


The CDC official Prevalence rate of ASD is 1 in 202, in the "black belt" poor rural farming areas in Alabama (1 in 909 for females). Some of the "well heeled" folks are running family farms.

Rates of Autism actually dropped in Alabama from 1 in 167 to 1 in 202, whereas nationwide CDC Prevalence statistics went from 1 in 110 to 1 in 88, overall.

http://articles.latimes.com/2012/mar/30 ... s-20120330

Then there is the 1 in 49 official CDC prevalence rate in New Jersey, and 1 in 38 statistic derived from a different methodology in the scan done in school age children in South Korea.

Most often cited factors of difference in diagnosis are Education, Economics, Awareness, and Accessibility to a diagnosis.


When I watch the two videos below one right after the other, two phrases come to mind:

Stimulus and a Search for Social Roles

as opposed to:

Balance and Clearly Defined Social Roles


Maybe there is already an answer somewhere in "Infofarmology". :)


[youtube]http://www.youtube.com/watch?v=rWgvsQmqZ-Q[/youtube]

[youtube]http://www.youtube.com/watch?v=LX153eYcVrY[/youtube]


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Last edited by aghogday on 15 Apr 2013, 4:05 pm, edited 1 time in total.

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15 Apr 2013, 12:11 pm

aghogday wrote:
Thanks for the response, Agent Palpatine.

At this point in time with the loose criteria that exists, it does seem from the evidence that exists, that prevalence rates of ASD, using the DSMIV diagnostic tools designed to assess ASD, in Amish Counties, are substantially lower. That includes all forms of Autism.

The reasons for that are not clear.

There could be many, but for purposes here I was providing a suggestion of general impact of increased factors of social stress and other environmental factors associated with increased stimulus.


I figured that you were arguing towards non-social enviromental factors, while I personally disagree, I'm not opposed to discussing it.

I think that the arguement that you're making here will drift towards purple/green status, since there are very limited facts on this issue. I not bore our readership with the rest of thoughts, but I would say that it would be very hard to find a single objective set of Aspie critera without cultural and social bias. Particularly when we are comparing groups such as the "Amish"*, you have lots of bias in the study. More to you by PM.

* Great oversimplifcation of several different groups and related cultures, I'm only using the phrase in it's culturally accepted usage.

I must also say my spelling was awful when I wrote the above, thank you for following my thoughts, since I did'nt type them very well.


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