Continuing Controversies over "I want to Say" and "Autism Speaks"

More about the Autism Speaks "I want to Say" Video linked below and the ongoing "Autism Speaks Controversies" in the Autism Community:

[name redacted], I visited your "ASD page" two times to post, since the last time you deleted my comment. One visit was in support of your opinion on the Basketball Game issue and the other was to support your opinion on Marriage Equality.

I posted on your page this time to offer support to another human being that I thought had a reasonable point of view. I also was defending the young man's love and mother's love for the young man in the video, by clarifying a statement that was taken out of context.

Several people have taken what the mother said about she and her husband "TELLING THEIR SON TOGETHER that he is sweet for an autistic child" out of context.

In effect, what that has done has made a message of acceptance into a message of hatred for her son. It could have reasonably been offensive if the message had been addressed at someone other than her son, but it wasn't.

The reason some people took it out of context is because they were not fully listening or could not understand what the mother said in the video.

It is unlikely you took the time or effort to read my reasonable comment below. It was likely more efficient for you to silence an autistic person over unwarranted offense against the organization, this go around.

That is a problem with anger and hatred towards others; it often ends up hurting others, unintentionally. No one sharing this empathy of anger appears to be thinking about the young man's love for his mother and how he would feel if he read about people treating his mother this way.
 
Nor do they seem to be considering the way the two actual autistic people speaking with the AAC technology might feel if they heard the comments on the Autism Speaks website blog minimizing their efforts in the video, as part of an overall harmful effort.

Autistic people were talking in the video but some were not taking the time to listen...

It is the reason I commented in the first place on your page, months ago, defending Erin Clemens as an autistic individual where I took the time and effort to listen to what she was saying...

Not many others were listening.
 
The reason for that seems clear: Anger and Hatred...
 
You do not silence me; you make my voice louder. However, you are silencing other Autistic people with this unwarranted hatred and anger, whether it is intentional or not.

Here is my comment again, below, if you care to read it. Many others will have that opportunity on the Autism Speaks Blog addressing the issue. You helped to make that possible by motivating my comment.

I can only thank you for that. :)

You can still do that for me in the future, whether or not you allow me to comment on your page or not. I suspect that you will. :)

"It was encouraging to see at least one person in the flash blog, linked below, that assessed the video, the voices of the children who spoke through AAC technology, and autism speaks effort as an overall positive one.

http://thautcast.com/drupal5/content/autism-speaks-progress-report

At least one other person had the civility to state that the film was not all bad. I think that is what the representative of Autism Speaks was valuing in the statement of appreciation, linked below along with the topic video, that people did take the time and effort to offer a variety of perspectives, instead of a common message of contempt.
 
http://www.autismspeaks.org/blog/2013/03/28/about-i-want-say



http://www.youtube.com/watch?v=Iu3c8fqBQcA

 
I do not think a statement like that would have been made by the organization if that civil effort had not been made in any of the blog posts. It would be like throwing salt in a wound and may still feel like that for those that only expressed contempt.

Perhaps the voices of one young man in grade school and one young adult woman in college, providing personal insight through the AAC technology, was not impressive enough for some, but it was impressive to me.

I am usually impressed by the insights provided by Temple Grandin and always welcome them. Her voice is not getting old to me.

These voices likely would not have been heard as an inspirational one to thousands of others, without this effort of the organization, those individuals on the spectrum who provided their voices through the technology, and those who worked to accomplish that goal together. It is a team effort, not a solitary one.

Those voices can become even louder in the future, if they are not silenced by others over differences in opinion over organizational missions, and instead amplifying the positive voices and sentiments on and off the spectrum that are being expressed in efforts like this.

I give the blogger linked above credit for providing a fair and balanced approach to this overall division in the autism community that remains for some.

The amount of criticism over the mother of the child on the spectrum stating: "we tell our son together he is really sweet for being an autistic child", was over a statement that was not likely a literal statement of a full quote delivered to her son.

Not all children with Autism are overly affectionate. I don't think it was a requirement to amplify that reality in the video, in setting the son apart from others on the spectrum, but the mother and the father are obviously proud of their son and only encouraging the positive qualities of their son by complimenting him as being a sweet boy, regardless if he is autistic or not.

That was not a personal message worth censoring to me, in my opinion.
 
There was love, compassion, challenge, sobriety of difficulties that not all share on the spectrum, along with passion expressed to help the children and young adults in the video.

There were also many different perspectives offered. There was little to no emotion of pity expressed in this film, instead, almost entirely a positive message for the future of all of these children.

Perhaps I can see that better than some because I have not watched the previous two videos that some took offense to years ago that portrayed heart-breaking sentiment, ten or fifteen times in contempt for the organization.

That can bring preconceived emotional perceptions to an analysis of this much more positive effort of message to society about the future of people on the spectrum, with or without what is often described by some as a 'cure'."

Autism, the Internet and "Ideological First Identity", a Collection of Thoughts:

http://katiemiaaghogday.blogspot.com/2013/05/autism-internet-and-ideological-first.html

"AutisticS Peeks!"


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AS
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Perception

and

Perspective

Autism and the "Behavioral Sink Experiment"

I thought I was the only one that saw an interesting analogy associated with John Calhoun's "Behavioral Sink Experiment" and some forms of what is defined as Autism, particularly among the populations of Japan and South Korea. Someone else finally brought it up, in a Forbes Article discussion on Autism, I was recently a part of.
 
There is usually no serious response, of any kind, to my comments on what I observed as an analogy, so I will provide one here. With a Google search on the keywords on one of my user names "Aghogday" and "Behavioral Sink" or "Autism" and "Behavioral Sink" under the User name Art2, one can see my comments on the issue, in a variety of different contexts associated with Autism.

The potential "Epigenetic" influence in one generation to the next, or in one lifetime in response to changing social environments and other environmental challenges, is likely applicable to John Calhoun's "Behavioral Sink" experiment in the 60's.

Maternal prenatal stress, hormonal changes in mother and developing fetus, and resulting changes in neurodevelopment are also potentially associated. Particularly in context with Calhoun's observation of "The Beautiful Ones", in his experiment.
 
The loss of social roles with continued subsistence can result in interesting social animal consequences. This is another one of many potential underlying factors associated with neurodevelopment and resulting or acquired behavioral changes/impairments, in one lifetime, in reciprocal social communication and associated observed behavioral impairments. It is not very popular or politically correct in some avenues of communication to talk about rats and people in the same sentence, but we do share a common ancestor, about 75 million years ago, that was a rodent, not a primate.

The "Behavioral Sink Experiment" is an excellent example of RRBI type behavioral impairments among social animals in response to chronic social stress, as well as impairments in reciprocal "rat" social-communication.

The distance some humans place between themselves and the rest of the social animal kingdom, is amusing to me, and part of a culturally derived illusion from the byproducts of collective intelligence. There are potential lessons to be learned that are often not heeded, in part, because of that contrived illusion of distance throughout recorded human history.


"Living in No Man's Land" by Michael Murphey:

http://www.youtube.com/watch?v=I2bDoDsBqFs


"Nothing is Your Own" by Michael Murphey (link to YouTube video):

https://www.youtube.com/watch?v=AGx3thXwNjA


Social Animals are well evolved for intermittent positive reinforcement. Continued access to instant gratification is a relatively new experience among any large population of social animals. At least on this planet.
 
http://en.wikipedia.org/wiki/John_B._Calhoun#1962-1963

This is part of the reason I doubt many species venture far from their planet, before becoming extinct. They may never get past the instant gratification phase of collective intelligence. :):(


"When the World is Running Down" by The Police:

 

http://www.youtube.com/watch?v=6o9LLIDDxvU


Autism, the Internet and "Ideological First Identity", a Collection of Thoughts:

http://katiemiaaghogday.blogspot.com/2013/05/autism-internet-and-ideological-first.html

My first experience in Questioning the Distance between Humans, other Animals, and the Illusion of Culture.

Ending of the Original "Planet of the Apes" Movie:

https://www.youtube.com/watch?v=Gb4eZ7Z5yk8

Two Movies that brought light to what is lost that cannot be owned.

The Emerald Forest:

http://www.youtube.com/watch?v=8qOMwWiEkjE

Avatar:

https://www.youtube.com/watch?v=LB2BM0mj4pU



After watching the second Movie, some people determined there is No Escape.

Some of those people made an Exit,
Anyway.







"AutisticS Peeks!"


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Perspective

"Vaccines not Associated with Autism"

The headline provided by the CDC, in the linked article below specific to the described study states: "Vaccines not associated with Autism".

Regressive Autism is the only significant subgroup of autism that is the topic of parental observation of concern with vaccines, in the broad autism spectrum and the much broader autism phenotype.

http://www.cdc.gov/vaccinesafety/Concerns/Autism/antigens.html 

This study did not prove there was no association of vaccines with Autism. Specific to the vaccine concern and regressive autism, what it did provide evidence for, as quoted from the article, was this:

"Children with ASD with regression (the loss of developmental skills during the second year of life) did not receive an increased number of vaccine antigens when compared to children without ASD with regression."

This was only an analysis of regressive Autism as defined in the loss of developmental skills during the second year of life, which may have a number of different underlying contributing factors depending on the type of regression.

The regression was not defined specific to loss of language skills, so it is difficult to assess the specific characteristics and severity of the regression, in the sample of 49 children studied. A similar limitation was addressed by Matt Carey, in 2009, in the LBRB blog linked below when an association of Mitochondrial disease, fever, and Regressive Autism was suggested in research. In that study, greater detail was provided in how Regressive Autism was defined than the CDC topic study.
 
http://leftbrainrightbrain.co.uk/2009/09/24/fever-plus-mitochondrial-disease-could-be-risk-factors-for-autistic-regression/
 
Regressive Autism includes a spectrum of specific symptoms and differing severity levels that were defined in the study. There are a number of potential contributing factors for regression.

For one, Hyperlexia is associated with regression in language, and that general condition is estimated in about 5 to 10% of cases of Autism. Another potential contributing factor of risk for regressive Autism is abnormal brain growth associated specific to males with Autistic Disorder.

It is not clear what the direct causal factors are in any of these conditions but there is growing evidence for identified associations that may play a role as contributing factors of risk. What is known about vaccines and identified in the link below, by the CDC, is that there is a risk of fever severe enough to cause seizures in about one out of every 3000 that are vaccinated.

http://www.cdc.gov/vaccines/pubs/vis/downloads/vis-mmr.pdf

There is recent research, as linked below, that seizures, language and motor development in Autism are potentially associated and linked in genetic mutations in duplications of chromosome 15q11-q13, in 1 to 3% of spectrum disorders.

http://www.sciencedaily.com/releases/2013/03/130326101532.htm

One can consider that Autistic Disorder, alone, is currently defined very loosely at this point in time, where 2027 potential combinations of behavioral impairments and/or developmental delays technically could result in a diagnosis where 2 people could be assessed with Autistic Disorder without any intersection of behavioral impairments.

http://crackingtheenigma.blogspot.com/2011/02/exactly-how-many-ways-are-there-to-get.html

It is beyond reason to suggest that one underlying factor could be responsible for Autistic Disorder, considering the complexity of how it is currently defined as a disorder. PDDNOS is currently defined loosely enough by DSMIV standards that a diagnostic tool used to assess PDDNOS in recent research conducted by Catherine Lord and associates, as described in the analysis in the link below, provides a suggestion of a potential misdiagnosis in up to 90% of those assessed in a "non-autistic" group of individuals studied.

http://crackingtheenigma.blogspot.com/2012/10/more-dsm-5-confusion.html

At this point in time, the DSMIV guidelines describe an Autism Spectrum of Disorders that could be associated with almost any factor, including being alive, at least per the diagnostic tool used in Lord's study. It has never been too early to suggest that Vaccines are not the definitive Cause of Autism.

However, it is much too early for the CDC to suggest that there is no association, from this very limited study and the research that has been done to this point. For whatever reason, as provided in research by the CDC, in one out of 3000 people vaccines trigger a side effect of high fevers and seizures. At this point, they do not have clear evidence for why it happens, but it happens.

This is a common issue in many side effects of pharmaceutical intervention. I suspect that if identical research was done in an attempt to disprove that seizures are associated with exposures to greater numbers of antigens from vaccines, that the results would be the same. However, if so, it would be incorrect to suggest that seizures are not associated with Vaccines. They happen. They just don't fully understand why.

It is rare that this happens, but it is also not well understood at all what the actual percentage of children with regressive autism that get severely ill after vaccines are. There is no way to objectively assess that other than a parental survey. However, in rare cases, some children do fall severely ill, and behavioral symptoms of Autism do become more noticeable leading to diagnosis. It happens. They just don't fully understand why.

The underlying factors of seizures cannot always be assessed in an individual. However, the symptoms can be measured by behavior or EEG, when there are no structural anomalies in neurology that can be assessed. There are no clues but behavior in many individuals currently assessed with behavioral impairments associated with ASD's.

At least up until this point, much of the problem in assessing what the causal/contributing factors are is poor diagnostic guidelines that have been used to define what Autism even is, as a neurodevelopmental behaviorally assessed condition.

With DSM5 standards and ICD11beta revision to date, Autism becomes a core behavioral impairment in reciprocal social communication. There is currently no one defined impairment that can be measured by either neurological or behavioral assessment that is core to all Autism Spectrum Disorders, in either DSMIV or ICD10 guidelines, so there can be no potential of one core definitive causal factor. Not even five. Not even 10.

As long as there is the potential of a contributing factor of seizures and potential brain damage, no matter what the underlying factor of the seizures may be, there is the potential of some association. However, at least at this point, per the research that exists, it does not appear to be a potential contributing factor in more than 1 to 3% of the spectrum.

That may not sound like many people but it could comprise 20 to 60K individuals currently estimated as diagnosed, under the loose criteria that exist now. The topic study does not come close to disproving that potential rare association, however small it may be, as a contributing factor.

As a comparative gravity of issue, there were about 7 people that participated in a flash blog that got the attention of a large charitable organization recently, per concern over how the organization describes people on the spectrum in a video about AAC. However, this article, in that same charitable entity's delivery of the research, as communicated here, received much greater amounts of outrage from parents that witnessed their children falling ill after vaccination with observation of greater behavioral impairments after that point. It happens. They don't clearly understand why.

Nevertheless, it understandably, still, is an issue of concern among those that witness this serious issue in their children, in rare cases when it happens. There might not be so much fear of government conspiracies, if the CDC could just state at this point they don't know why this happens as a potential side effect in rare cases after vaccinations. It is reported. It happens.
 
It is much more common than death following a vaccination but potentially less common than one out of 3000 severe fevers and seizures as a side effect of a vaccination. Additional effort at research addressing potential root associations such as genetic mutation, fever, seizures, mitochondrial disease and Autism could still provide additional answers.

However, at this point, a general assessment in a statement of no association by the CDC is not much more believable than a statement of definitive causation. At least, for the limited number of individuals that has witnessed increased observable impairments associated with Autism, happening in their children after vaccination.

It makes it sound like there are many people complaining about it if one limits their world to online resources, but the potential contributing audience, online, is one of global nature and millions of people. It is a similar issue as a couple of hundred people online taking offense at a compassionate portrayal in a video about AAC.

In the real world, it is not on the radar for most people. There are more people listening to the anti-vaccine rhetoric of Alex Jones in the US, than has been attributed to people like Jenny McCarthy. However, in the US, the CDC is doing a great job of promoting what is the overall benefit of vaccines as a lifesaving effort, as the US retains levels close to the highest it has had in the past in "Herd Immunity" in the population at about 95%.

Religious waivers are still the greatest area of refusal to vaccinate other than medical reasons. This is one area, overall, in the US, per society adherence to the medical model of disability, in advantage in keeping the population healthy. The US was hardly phased by the Wakefield Vaccine/Autism research, whereas in Europe there was a substantial causal effect associated lowering the assessed vaccination rates below "herd immunity" in 80-percentile territory.


Update on 4/21/13:

There is a very interesting discussion in the comments section of the Left Brain Right Brain, LBRB website, linked below, in a topic  where Matt Carey went through the historical element of this Vaccine Controversy along with the expression of disgust that exists among some people, associated with Andrew Wakefield and the recent outbreak of Measles in Europe.

There is good information in that discussion for anyone who may be considering Temple Grandin's recent recommendation on her website, in consideration of a delay in MMR vaccination to age 5, if there are familial vulnerabilities that Grandin identifies on her website, in what looks like a quote from her upcoming book, "The Autistic Brain". 

I support what I see as reasonable aspects of her concerns, in the comments section of the discussion linked below; however, in the discussion, I provide the evidence that I am able to locate and link, which still leans heavily toward the benefit of vaccines over the cost of potential rare side effects, even if some of the general vulnerabilities of neurology and health that Grandin identifies, exists per family history. 

My personal opinion that continues as it has been the same in the past, is that only a physician is qualified to determine what type of Health Vulnerability in each unique case is worthy of consideration on a decision whether or not to vaccinate. 

Where there is no health vulnerability assessed by a physician, all the available evidence that exists shows that the benefits of vaccination greatly outweigh the potential costs in risk of side effects that have been studied, identified, and assigned statistical risk in percentage, updated in 2012, as detailed in the discussion, linked below from the LBRB website.

I appreciate Matt Carey, allowing me to participate in the discussion, as a relative Layman on these issues, whereas some of the other individuals discussing the issue appear to have been focused on it for years. 

I do not share the same level of emotional investment that some of the other people in the comments express; however, on the other hand, I am not versed in the level of detail some others have by memory, so it is a research project for me in real time, where I stumble on some of the "vaccine related jargon" that I correct in my comments in the discussion.

In addition, Temple Grandin's website is linked below for those who wish to review the comment that I referenced from her, on that website.


(Edit on 4/28/13:  It appears that all Vaccination related advice has been removed from Temple Grandin's Website linked below)


www.templegrandin.com



http://leftbrainrightbrain.co.uk/2013/04/17/andrew-wakefield-dont-try-to-blame-me-for-the-results-of-what-i-said-and-did/  


Part two of Update on 4/21/03:

My last and likely final comment quoted below that was not published on the Left Brain Right Brain Website, LBRB, linked below, in the discussion there on the "Vaccine Controversies".

http://leftbrainrightbrain.co.uk/2013/04/17/andrew-wakefield-dont-try-to-blame-me-for-the-results-of-what-i-said-and-did/

It appears that Mr. Carey misunderstood my communication in thinking I was suggesting that Temple Grandin referred to the MMRV, in the NYT interview, when in actuality I was correcting a mistake in communication I had made earlier in the discussion. 

In addition, I provided further information in support of both acknowledgement of the warranted concerns of parents of children who fall ill to severe side effects of vaccines and potential unrelated illness, as well as evidence existing that supports the overall benefit of vaccines vs. the overall cost of potential rare severe side effects.

Here is the comment that was not published, to this point in time, with some minor edits for reading clarity:

(Note: Matt Carey from LBRB, did approve my last comment and clarified he had problems with the mobile version of his Wordpress Blog. :)

"For clarification and correction regarding my earlier statement in this discussion about the MMRV vaccine, it is approved by the FDA. It is the CDC, not the FDA that does not recommend the MMRV be administered before age four, per recent findings by the Kaiser Vaccine Center.

The CDC's recommendation, as linked below, is for separate vaccinations of MMR and the Varicella vaccine before the age of 48 months (4 yrs.), due to the doubled risk of severe fever and seizures that have been identified in studies of children under the age of two.

The CDC recommends the MMRV vaccine after age four if the MMR vaccine has not been administered separately before age 4.

The risk of severe fever and febrile seizure at age 2 and below is identified as a little over two in 3000, for the MMRV vaccine, as opposed to one in 3000, with the MMR vaccine alone.

Per the 2012 study linked below, from the Kaiser Vaccine Center, the risk drops to 1 in 15,500 at age 4 to 6 for the MMRV vaccine and 1 in 18,000 for the MMR plus Varicella Vaccine.

Temple Grandin may be making her personal risk assessment of recommendation for vaccination at age 5, and what she sees as her own personal list of vulnerabilities associated with ASD, based in part, on this information from the Kaiser Vaccine Center.

However, the danger of not being vaccinated before age 5 based on these numbers alone, which is the newest government reported statistics on risk and side effect of high fevers and febrile seizures associated with MMR and MMRV, definitely does not outweigh the overall risk of what is associated with contracting the actual diseases before age 5 if one is not vaccinated with the MMR or MMRV or MMR plus Varicella Vaccines.

Febrile Seizures alone are not studied as increasing the risk of Epilepsy or Brain damage in the general population.

However, as quoted below from the article that provided further details from the linked abstract, it is worth noting that the peak of the high fevers and febrile seizures occur at 18 months, and typically do not occur after age 5.

The time frame of 18 to 24 months is where the correlation, to date, per regression and timing of event of high fever and illness among children has been identified and reported by parents of a relatively small subgroup of children exhibiting symptoms of developmental regression shortly after these high fevers and/or other elements of illness reported by parents.

This data from the Kaiser Vaccine Center presents a strong case, by itself, of a factor of correlation rather than causation in these vaccine related serious side effects and developmental regression occurring in the same time frame, among a rare sub group of individuals on the spectrum.

http://www.ncbi.nlm.nih.gov/pubmed/22473362

"The researchers noted that febrile seizures typically occur in children ages 6 months to 5 years, and the incidence of these seizures peaks at about 18 months of age."

http://health.usnews.com/health-news/news/articles/2012/04/02/measles-vaccines-wont-raise-seizure-risk-in-young-kids-study

One of the other greatest factors of correlation that may rule out vaccines as an actual direct causal factor per developmental regression is that research has also determined that there is abnormal brain growth specific to males assessed with regressive Autism, which happens well before vaccinations are administered.This abnormal brain growth is not significantly assessed in a group of females with regressive autism or other children diagnosed on the spectrum at the same age, in that study, linked below:

http://www.ucdmc.ucdavis.edu/publish/news/newsroom/5983

There was a presentation scheduled in the upcoming IMFAR, (International Meeting For Autism Research), in May, on the neuro-pathology of Cavum Septum Pellucidum and Cavum Vergae in Macrocephaly and Autism Spectrum Condition, that could have potentially shed additional light on this issue, but it appears that abstract has been withdrawn and may still be published in the future.

Cavum Septum Pellucidum and Cavum Vergae are already implicated in association in some co-morbid and inter-related genetic based disorders associated with the spectrum such as 22q11 deletion syndrome and Schizophrenia.

https://imfar.confex.com/imfar/2013/webprogram/Paper13947.html

I am a relative "nobody" on the internet, but based on all the evidenced facts that have been presented in this entire discussion, I personally recommend that children should be vaccinated according to CDC recommended vaccination schedule unless a medical doctor advises not to do so based on medical evidence of substantial risk of vulnerability, where the potential cost assessed may be advised as outweighing the potential benefit of vaccination, in rare instances where that determination is made by a qualified physician."


For anyone that made it this far, in this compiling of data, in three of my blog posts here is an additional avenue of potential interest. :)


The Autism Research Scientist that writes in the Blog linked below provides a virtual "Goldmine" of resources addressing the Co-morbid conditions associated with what is currently described and defined as the Autism Spectrum under DSMIV guidelines.

In regard to GI issues and Autism, and all the research that is coming out now, that is farther removed from the "vaccine controversies", this Autism Research Scientist's post linked here and the comments on it, provide an excellent overview of the state of science on this issue of GI difficulties and Autism, leaving the "vaccine controversies" in the dust, so to speak.

All of the blogs he lists on his blogroll are worth taking a look at when one who is interested in this kind of science, has the time.

http://questioning-answers.blogspot.co.uk/2013/03/gastrointestinal-mucosal-molecular-profile-autism.html


5/1/13:

Additional attempts to bridge understanding and knowledge on this overall issue of Vaccines and Autism:
From the Left Brain Right Brain website:

http://leftbrainrightbrain.co.uk/2013/04/30/andrew-wakefield-and-vaccine-safety/


From the Wrong Planet website:

http://www.wrongplanet.net/postt229492.html


From the Thinking Person's Guide to Autism Facebook Page:

https://www.facebook.com/thinkingpersonsguidetoautism/posts/530675340307131

Autism, the Internet and "Ideological First Identity", a Collection of Thoughts:

http://katiemiaaghogday.blogspot.com/2013/05/autism-internet-and-ideological-first.html

"AutisticS Peeks!"


It's Good

to Hear

ya
:)!
*

(:@@
@:)
!*



AS
P:
Autistic Spectrum
Perception

and

Perspective

"Asperger Love": New Book out by Amy Harmon

I purchased the book and found it to be one of the most balanced accounts about relationships and Asperger's syndrome that I have come across. It is certainly not the only one, and much different from some of the other books associated with relationships and Asperger's.

The author used the terms Aspergerian, Aspie, and Autistic to describe people diagnosed with Asperger's syndrome and stated some refer to themselves as Aspergerian or Aspie, but did not suggest that the majority do.

I did a recent informal poll on the Wrong Planet Website, under my user name Aghogday, linked below, and out of over 100 people, there was close to 20% identifying as autistic, about 20% identifying as Aspie, and the rest identifying with neutral or other identification that was not disability/condition first identity.

In addition, out of most of the polls done there recently about a third of individuals are looking for cures for their difficulties on the spectrum. They can feel more comfortable talking about that there now because people have become more supportive of differences of opinions, overall, on the cure vs. anti-cure ideologies.

http://www.wrongplanet.net/postt225205.html

The Author referred to the couple's identification with "Aspie Pride". There is certainly, historically, in the last decade, been a strong element against research to mitigate the impairments associated with Asperger's syndrome among some who identify as part of a “so called” "Aspie Pride Movement".
 
In fact, John Elder Robison, was labeled as a "TMS spammer" in his profile, in one "Aspie Pride online community" for discussing the potential of TMS as a therapy, as discussed in the book in mitigating impairment in connecting with others.

However, since that time, a few years ago, that site has become more supportive of differences of opinions on these types of issues.

There is no wide agreement on what "neurodiversity" means, which is not necessarily the same concept as "Aspie Pride" that was discussed in the book.

As an example, some people allow schizophrenics in their interpretation of the "neurodiversity spectrum" while others do not. Some others suggest that every human is part of it. According to what Wiki has been able to surmise the "neurodiversity movement" is centered on an anti-cure ideology, which dismisses the medical model of disability.

http://en.wikipedia.org/wiki/Neurodiversity

Both models apply in Autism, as the major genetic causal factor identified for Autism at this point in time is Fragile X syndrome in about 5% of the spectrum, where a genetic mutation resulting in a difficulty with protein synthesis has been reported along with promising research to "cure" or "remediate" associated impairments.

That is just one example of a subgroup of the spectrum where underlying factors associated with identified behavioral impairments are much different from what may underlie similar defined and observed behavioral impairments described as an autism spectrum disorder, in other subgroups on the spectrum.

While some people define the word "cure" in the historical context of the term, as a complete remedy for an illness, the modern medical definition of cure is more reasonable as one that does include mitigation of symptoms.

http://www.merriam-webster.com/medical/cure

The complexity of disease and/or disorder and limitation of "cure" is more fully understood as a result of modern medical research. The organization that Plank broke the barrier to work with, along with Robison and others identifies the needs of "cure" in alignment with the modern medical definition of the word, including elements of psychological well-being that may result from improved acceptance and support.

http://www.autismspeaks.org/what-autism

The statement that some are looking for cures through research and some are looking for acceptance and support, with an understanding of the differences of actual difficulties and needs across the full spectrum, was not an unreasonable description given by the author among those that have a balanced view of the spectrum.

The author referred to discussions of Alex Plank creating an Aspie dating site, after he had created the Wrong Planet website. The Wrong Planet Website is not a dating site but there are discussions about love, dating, and issues people have with it that are important for support. Some people may find offline relationships there, as in any other social networking site.

"Aspie Affection" created by Plank is a dating site, and is what was referred to per the statement about creating a dating site for people diagnosed with Asperger's syndrome in the book. It is rarely discussed on the wrong planet website site, but there are "Google Adsense" advertisements for it, if one does not have an "Ad blocker” in their browser.

In general, dating sites on the internet can be a risky proposition, but the same was true in the dancing bars and other bars in real life, that were more prevalent, last century in the "real world". While some people may be looking for another person on the spectrum to date, for others an on and off the broader autism phenotype type of relationship can be a very complementary one, with much different ways of thinking, as opposites often do attract. :)

The wrong planet website offers a great deal of support for people of all orientations of gender and sexual orientation, many of who are not looking to date at all.

Many people on the spectrum are not comfortable communicating on blogs or Facebook. It is unfortunate that the "Wrong Planet website" does not receive the same type of awareness of existence as the much larger social media arenas that have the "Facebook advantage" of sharing information.

Never the less, over 70K registered members is good evidence of a good word of mouth advertisement that the site does exist for some. Along with sites like the "Thinking Person's Guide to Autism", that highlight it on their cover page, as an excellent support site that does meet the needs of support for some people on the spectrum.

The Wrong Planet website is also a valuable resource of Google search on almost any Autism subject, for a comprehensive view from people on the spectrum for those off the spectrum to come to know how diverse it is in different ways of thinking, perspectives, and symptoms that make up a full spectrum of diversity.

This is one area of advantage that Facebook does not provide as Google searches usually end up in a dead end result on the top of a cover page, and not directed at an actual topic of interest or information.

I suspect that this will change soon for Facebook, as it is steadily becoming a massive social resource for blogging and interactive discussion, instead of just a place for social connection, organizational awareness, and comment. Timeline was the first real step in that direction. I also suspect it will not be long before Google succumbs and becomes the official search engine instead of the comparatively weak search resource of "Bing".

If Facebook and Google can reach a compromise perhaps more people with an anti-cure ideology and a cure-ideology can reach additional compromise too, as illustrated well in the book through the philosophy of Jack, Kirsten, Plank, Robison, and many others that have found points of agreement or tolerance on issues of controversy associated with the different ideologies.

Autism, the Internet and "Ideological First Identity", a Collection of Thoughts:

http://katiemiaaghogday.blogspot.com/2013/05/autism-internet-and-ideological-first.html

"AutisticS Peeks!"


It's Good

to Hear

ya
:)!
*

(:@@
@:)
!*


AS
P:
Autistic Spectrum
Perception

and

Perspective

Autism and the Association of Childhood Abuse and/or Behavioral Addiction

There was a very interesting analysis of a study that provided a generational association of maternal abuse in childhood with subsequent generations as a causal factor of Autism Spectrum Disorders. 

The take in the article discussed in the link below from the Forbes publication, by author Emily Willingham, assessed the potential that an inflammatory or epigenetic influence might be the trigger. 

But I think there is more of a potential "common sense" association as a contributing factor in what makes a broader autism phenotype a diagnosed disorder, within the span of one life, in some cases, per sexual and/or physical abuse and the controversial existence of non-substance behavioral addictions as part of the disease of addiction.

My response is quoted here from the discussion at this link:

http://www.forbes.com/sites/emilywillingham/2013/03/25/abuse-of-mom-in-childhood-and-autism-risk/

"In addition, because of some of the key behaviors associated with autism, autistic children are more likely–much more likely [PDF]–than non-autistic children to be abused, physically, emotionally, and sexually."

For clarification the study, per the statement quoted below in the last paragraph, was limited to a sample of individuals referred into comprehensive community mental services and not indicative of the general population of people on the spectrum.

Sexual and/or physical abuse, as a single factor of risk, predisposes a higher statistical incidence for the need of comprehensive community mental health services with or without an autism spectrum diagnosis or assessment as such.
 
There is no indication in the study, quoted below, whether or not associated sexual and physical abuse are part of what actually led to a diagnosis among the individuals in the study.

It is unlikely that physical and sexual abuse causes language impairments, deficits in motor skills, but potentially issues with sensory integration problems as chronic stress can lead to issues such as sensitivity to noise, but none of these neuro-developmental impairments is required for a spectrum diagnosis, per the current loose criteria requirements for Asperger's syndrome and PDDNOS, nor will they be mandatory required for a DSM5 diagnosis.

Ironically, the Gillberg criteria for Asperger's syndrome provides insurance for the continued capture of some type of neurodevelopmental disorder as language impairments and problems in motor development remain as mandatory criteria.

It is a well-known factor that chronic stress can lead to RRBI type behaviors, not only in humans but in other animals, like rats, with the only other requirements currently required for a diagnosis potentially as limited as deficit in ability for back and forth conversation and developing and maintaining peer appropriate friendships.  Sexual and physical abuse is among the greatest factors of chronic stress in humans.

In the DSM5 criteria it is identified that symptoms are present in early childhood but may not fully manifest for a diagnosis until social demands exceed social capacity. Physical and sexual abuse certainly rate as a social demand above and beyond what most people deal with in life.
 
And the symptoms of substance abuse and behavioral addiction per the American Society of Addiction Medicine, ASAM, broad definition of the disease of addiction correlates, to some degree, of what is described in the current loose criteria requirements for PDDNOS or Asperger's syndrome.

And again, certainly a social stressor that could take one off the broader autism phenotype and on to diagnostic territory per social demands exceeding social capacity.

It is currently very difficult, per DSMIV guidelines, to determine what environmental factors, including physical and sexual abuse and even behavioral addiction, are the social demands that takes one off the broader autism phenotype and on to a spectrum diagnosis for a potential diagnosis of Asperger's or PDDNOS later in life.

Particularly, when there are no clear neurodevelopmental factors mandatory required for a diagnosis later in life, even with the new DSM5 diagnostic criteria, other than traits that might put one on a broader autism phenotype earlier in life.

I think it is clear that addiction, either substance or behavioral and physical/sexual abuse, alone, does not cause a neuro-developmental disorder. But, I also think that beyond any potential inflammatory or epigenetic impact, such as what has been described in a recent study of schizophrenia among teenagers who are bullied pulling the switch of epigenetics associated with a maternal infection, there is clearly the potential that the factors of physical/sexual abuse and/or behavioral addiction could be significant factors of social demand that takes one off the broader autism phenotype and on to a diagnosis on the spectrum.

In addition, as far as the prenatal environment per hormonal influences, there is some evidence that sexual, physical or verbal abuse could be factors rising to the level of stress that might alter the hormonal prenatal environment, leading to problems in neurodevelopment.

It is impossible to prevent a broader autism phenotype, even in what is observed as similar traits in the animal kingdom, nor does it appear that would be beneficial, but it is possible to control environmental factors like this that could make the difference between a broader autism phenotype or diagnosed disorder.

I see quite a few people making fun of this study, in various online avenues, but associated research may lead to the real road of determining the increase in actual diagnoses, beyond loose criteria and greater awareness leading to a diagnosis, per recent changes in environmental factors of culture.

There is no evidence that sexual or physical abuse has increased in the last two decades and some evidence that is has decreased, but there is evidence that behavioral addictions are on the rise.

The DSM5 working groups have not been able to fully wrap their minds around a growing cultural phenomenon yet, to provide appropriate diagnostic criteria to assess and more fully measure the impact of behavioral addiction.

Some of the ASAM symptoms of behavioral addiction can potentially be defined as an RRBI in clinical practice. And also potentially associated with other problems of social communication to this point, but it does become a lower variable of potential contribution of effect with the more restrictive criteria of the DSM5, and as always less of a potential contributing factor with the Gillberg Criteria that makes a mandatory requirement of criteria for motor development and language impairments.

"Finally, the children in this study sample were referred into comprehensive community mental health services. To our knowledge, no published information is available on how their characteristics may differ from the general population of children with autistic spectrum disorders."

Autism, the Internet and "Ideological First Identity", a Collection of Thoughts:

http://katiemiaaghogday.blogspot.com/2013/05/autism-internet-and-ideological-first.html

"AutisticS Peeks!"


It's Good

to Hear

ya
:)!
*

(:@@
@:)
!*



AS
P:
Autistic Spectrum
Perception

and

Perspective

Autism Acceptance vs. Awareness

"Autism Speaks" receives a large amount of name brand recognition, as the brand name continues to be highlighted in some blogs and face book communities in attempts to demonize the organization. It creates additional opportunities for people to assess the organization for what it is presently doing.

It is almost time for "World Autism Awareness Month", along with the "Light it Blue" campaign, sponsored by Autism Speaks, that is a source of discomfort voiced by some in online Autism communities.

This global effort is a potential source of trickle-down charitable support to the thousands of non-profit organizations, locally, nationally, and globally that work independently and/or together to provide awareness, education and support for people on the spectrum.

Other than the continued vaccine controversies that present a negative element on the Autism Speak's face book page, the over one million likes is reflective of the positive atmosphere that is presented there.

There are photos of smiling children and young adults on the spectrum that continue to be highlighted there, and in the PSA’s the organization creates.  However, it is not possible for any charitable organization to raise money for a mission, if there is not cause to generate the emotion of compassion in human beings. That’s not even marketing 101 it is humanity 101.

Autism Speaks is run like a well oiled corporate machine that is no surprise as it was founded by a corporate executive that was successful in running a media giant for two decades. But no organization is error free; without assessing feedback and responding appropriately, no organization can survive in a free market economy.

The two videos some found offensive, "Autism Everyday" and "I Am Autism" are history. They no longer exist anywhere but in some online autism communities where the memory is kept fresh, often sparking the emotion of empathy anger, that can be a reliable source of comments.

As illustrated by Christopher Gillberg in the video link below, who designed the Gillberg Criteria for Asperger's that will continue to be used in some areas of the World after the DSM5 goes into effect, there are many underlying associated conditions that result in what is currently defined by several sources of criteria in the assessment of Autism spectrum disorders.

http://www.youtube.com/watch?v=bfSlZqe-iik

A short list includes Fragile X syndrome, Tuberous Sclerosis, Noonan’s Syndrome, 22q11 gene deletion syndrome, Regressive Autism specific to males with abnormal brain growth, Sensory Integration Disorder, ADHD, Pragmatic Language Impairment (PLI), Non-verbal learning disorder (NLD), Hyperlexia, and many more.

About half of those associated conditions can result in clinically significant language development delays including Hyperlexia and PLI.

My flavor of Autism includes Hyperlexia that comprises precocious reading ability, language development delay until age 4, difficulty with verbal speaking most of my life, problems with reading comprehension, and an overall desire to decode every symbol I came across. Numbers, words, and letters were some of my best friends. :) In addition, Motor development problems, Sensory Integration issues-Tactile sensitivity and ADHD rounded out a general description of my flavor of Autism.

Under DSMIV and ICD10 guidelines my flavor of Autism, if assessed under the age of 4, is most often diagnosed as Autistic Disorder or PDD NOS, but under Gillberg Criteria that allows for a Hyperlexic or Pragmatic language impairment language development delay, it fits a diagnosis of what Gillberg and Hans Asperger described,  initially, as “Autistic Psychopathy", ticking almost every trait of that Autistic syndrome described.

From my experience in online Autism communities, the flavor most often described is one with strong symptoms of Non-verbal learning disorder, NLD, where there may be early speaking abilities, but often substantial issues with math and visual spatial skills.

That is no surprise as the majority of individuals diagnosed with Asperger’s syndrome meet the symptoms for NLD, in the US, where DSMIV guidelines have been used.

Autism Speaks clearly acknowledges in its “What it means to be on the Spectrum” section on their main website linked here: http://www.autismspeaks.org/what-autism that there are some individuals that experience different challenges than others on the spectrum.

Symptoms of the three communication disorders, listed above, are often what is described in online autism communities, but rarely Fragile X syndrome, Noonan’s Syndrome, 22q11 gene deletion syndrome, Tuberous Sclerosis, the type of  Regressive Autism associated with abnormal brain growth, and other challenging associated conditions.

Autism Speaks acknowledges that the support needed by some is one of accommodation, acceptance, and opportunity to work with their strength in abilities. But the needs served by research are much different for others.

While accommodation and opportunity to work in areas of strength of ability can be legislated and enforced by disability regulations and laws, limited now per ADA laws that exist, acceptance can neither be legislated nor enforced by law.

Acceptance is an ethical decision that can be enhanced by the lessons of home-life and culture. Acceptance in our culture, promoted almost everywhere in every avenue of information is the attainment of perfection both in vanity of appearance and material success.

The only effective way for most people to experience acceptance in this culture is to accept one’s self and attempt to understand this dichotomy of culture. Autism Speak’s PSAs, websites and volunteer walks can be avoided if taken offense to, but the over-driving source of non-acceptance is an unrealistic expectation of culture driven by media sources everywhere, in almost every avenue in life.

It seems sad to me that in some online Autism communities a kind word about a charitable organization like Autism Speaks or the need for research for a cure of remediation of the difficult symptoms of a subgroup of Autism like Fragile X syndrome can mean an automatic boot out of the online Autism community.

Some therapies, research, and support are appropriate for some sub-groups on the spectrum and not appropriate for others. While acceptance is hard for anyone to find in larger society, it would help to at least attempt to understand these differences in characteristics, needs, and supports of people on the spectrum to at least potentially better provide a level of what can be controlled in acceptance among people that do have compassion for each other in online Autism communities.

That is what one sees on Autism Speaks face book page, but there are people there that get paid to make it happen. The hundreds of blogs, facebook pages, and large online Autism communities are comprised almost entirely of volunteer effort, where only personal ethics determines the social rules of acceptance in each avenue of communication, and who may find a place to belong and who may not.

As in all cases of volunteer acceptance there is no law that enforces that other than personal ethics, attempts at understanding other perspectives, and respect for them when possible. :)

Autism, the Internet and "Ideological First Identity", a Collection of Thoughts:

http://katiemiaaghogday.blogspot.com/2013/05/autism-internet-and-ideological-first.html

"AutisticS Peeks!"


It's Good

to Hear

ya
:)!
*

(:@@
@:)
!*



AS
P:
Autistic Spectrum
Perception

and

Perspective

"E-scape" and the Tree

It is ironic to me
how some seemingly
positive cultural adaptations

resulting in access to instant gratification,

is changing the way people see and experience the world.


From

sky-scape
 to land-scape

to house-scape

to screen-scape


and an even smaller

screen-scape of a "Lilliputian"

virtual digital dimension

in a smart phone.


I too cannot "e-scape" this,

as I have finally given in

and signed up

for a "smart" phone
"plan".


I had a beautiful,
perfect shaped giant oak tree
that Hurricane Ivan destroyed

and left as a shape of
a dinosaur skeleton.

I had lights around the tree
pointed up into the branches,

which often gave me a sense of bliss

standing in my back yard
staring up at the tree,

"land-scaped" by stars behind it.


I had no idea how much I loved that tree,
 
as I could not imagine anything
taking away something

so solid,

strong,

and alive.


Eventually after it was gone,

I realized how big and beautiful
the sky had become
in my backyard,

providing
even

a greater
sense

of awe
and beauty.


From the stump of the tree,

a twig grew that my spouse wanted me to clip,

but I refused to because it was what was left of my beloved tree.


I use to take a lot of pictures of my yard
and my plants who I felt like were my loved ones,

but when I first experienced immune system issues
and could no longer take care of them as I used to

I lost some of that close connection to my yard.

That twig I saved from the clippers 9 years later
has became a 30-foot clone of its predecessor

that for some reason I noticed today


in the same glory as the same tree

that was there before.


Life is amazing.

And so is adversity.


http://www.youtube.com/watch?v=-MbGTQbzou8


Autism, the Internet and "Ideological First Identity", a Collection of Thoughts:

http://katiemiaaghogday.blogspot.com/2013/05/autism-internet-and-ideological-first.html

"AutisticS Peeks!"


It's Good

to Hear

ya
:)!
*

(:@@
@:)
!*



AS
P:
Autistic Spectrum
Perception

and

Perspective