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BigSister
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11 May 2013, 12:19 pm

So, I made a website about autism - I guess it'd fall under the category of autism awareness (although I prefer the label autism understanding) or media representation, if you count a website under media. I've got a page on it covering controversies and autism which you can check out here: http://autismspectrumexplained.weebly.c ... rsies.html but I have two major concerns about it.

1) Does it seem impartial?
I tried to cover both sides of each controversy as impartially as I could, but I doubt I succeeded. My concern is that I may have tried so hard to cover up my own views that I might have seemed like I was in favor of the other side; or maybe I think I covered up my own views but I really didn't. Anyways, without a third party to read, I won't know, which is why I need your help.

2) How can I cover ABA?
I know ABA is controversial, especially dealing with stimming, so I want to include it in the treatments section, but I haven't had any exposure to it and I'm not finding a lot of information for both sides (particularly lacking the anti-ABA side). If you have a stance on this, could you comment and help me understand your side (and/or both sides?) or link me to websites that cover each side?

Those two questions are my priorities, but if you have something to say that falls outside of those questions/about the website as a whole, feel free to comment with it as well - constructive criticism is appreciated and acted on. Thanks so much!



Last edited by BigSister on 11 May 2013, 9:25 pm, edited 2 times in total.

AgentPalpatine
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11 May 2013, 2:59 pm

The first page I got to by Google, http://autismspectrumexplained.weebly.c ... neous.html , the text is difficult to read. When I read it, it seems like almost every line is qualified in some maner. I write like that myself on occasion, but a page that links to other topics might not require so many qualifing words in the text. In (at least) American English, when qualifying langauge is used when not required, it conveys weakness and/or lack of focus.

I have issues with the following description:

Quote:
One of the more common instances of this is the diagnosis of Asperger's Disorder as opposed to Autistic Disorder. People previously diagnosed with Asperger's Disorder are verbal, and their IQs are generally above average - think Sheldon Cooper or Einstein.


I think that just feeds into the artificial divide between Aspies and "HFA". Even if we use DSM-IV "standards", the critera differences relate to observed delays in language, not to IQ.

I would like to note that Sheldon Cooper is a fictional character, and Einstein is not. While they are both popular culture references, perhaps they should be seperated. I'd also note that there are disputes over Sheldon Cooper's portrayal (I don't watch the show myself), and Einstein's status relating to the spectrum has long been a point of contention.


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BigSister
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11 May 2013, 3:52 pm

The reason I qualify so much is that I don't want to offend anyone or leave any cases out. This can be a really touchy subject, on both sides of the issue (parents and people on the spectrum), so I qualified my statements a lot. I'll work on it, though, and see what I can do...that will probably be something that will happen slowly and taken into account going forward. Also, was it the qualifying style of writing that was difficult to read, or was the actual font/set-up hard as well?

I fixed the reference you referred to (removed the sentence altogether), but I'm a bit confused - I did find references to "normal" verbal and intellectual development, whatever that means, when looking up Asperger's and at (http://www.nlm.nih.gov/medlineplus/ency ... 001549.htm) I found references to "many" with higher IQs. One would think since it's .gov it'd be more reliable; that said, there were plenty of things on that page I didn't agree with, so not necessarily. I'm not contesting what you said, but I would like some clarification to learn from going forward.

Anyways, thanks for the feedback - this exactly the sort of thing I want/need. I'm not perfect and I realize I have a lot left to learn, so I always appreciate information to help me along the way. :)



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11 May 2013, 7:04 pm

BigSister wrote:
The reason I qualify so much is that I don't want to offend anyone or leave any cases out. This can be a really touchy subject, on both sides of the issue (parents and people on the spectrum), so I qualified my statements a lot. I'll work on it, though, and see what I can do...that will probably be something that will happen slowly and taken into account going forward. Also, was it the qualifying style of writing that was difficult to read, or was the actual font/set-up hard as well?

I fixed the reference you referred to (removed the sentence altogether), but I'm a bit confused - I did find references to "normal" verbal and intellectual development, whatever that means, when looking up Asperger's and at (http://www.nlm.nih.gov/medlineplus/ency ... 001549.htm) I found references to "many" with higher IQs. One would think since it's .gov it'd be more reliable; that said, there were plenty of things on that page I didn't agree with, so not necessarily. I'm not contesting what you said, but I would like some clarification to learn from going forward.

Anyways, thanks for the feedback - this exactly the sort of thing I want/need. I'm not perfect and I realize I have a lot left to learn, so I always appreciate information to help me along the way. :)


First, just a note that it took me a very long time to figure out is that if one just provides the full URL the system of commenting on this website will automatically format it into a link people can click on. I personally like full links because I want to know the actual address of where I am going in advance. :)

Your initial link is provided below in "clickable" form, as the one with miscellaneous provided by Agent Palpatine, found on Google, who by the way has offered me valuable advice in the past (Google and Agent Palpatine), is not the best starting point.

I suggest you edit your initial post to provide the "clickable" form of your link below to get greater feedback.

http://autismspectrumexplained.weebly.c ... rsies.html

We live in a Twitter world now, where any effort is not likely to happen without brevity of comment and/or adequate intellectual, sensory and/or emotional stimulation for focus. Copying and pasting a link is beyond what most people are willing to do to pursue information. Your link was worth copying and pasting to me.

Additionally, many people are not willing to pursue comments more than a few lines long. Paragraphs of more than 4 lines, and posts of longer than 4 paragraphs are often lost in the forest for people.

I liked your website. I would suggest not even addressing the ABA issue. It is the only therapy where there is a substantial body of research showing effective therapy for symptoms directly associated with Autism; however, the same research shows it does not work for many people on the spectrum. Those that find it works are going to be happy about it, overall, and those that don't find it to work are more likely to see it as relatively useless or harmful. This is five lines now. :)

You will find many viewpoints on this site, because the moderation team allows them. However, I would not focus greatly on viewpoints generated by organizations like ASAN and associated people that blog on the internet, because that organization and associates will censor comments that are in disagreement with the organization's ideologies, such as Autism Speaks is a bad organization. There were a couple of videos supported by the organization that were reasonably offensive; however, that is in the past. Ouch, six lines. :)

There is a substantial percentage of people on this site that do not support the stringent view that cure per remediation of the difficult challenges associated with autism is a bad thing. The ASAN organization and some people associated with that organization will censor out viewpoints like that, if they include the word cure.

Autism facts, Autism political ideology controversies, and how I find it to personally live on what I describe as an Autism spectrum are all special interests of mine.

I suspect that you are a very fast reader, and may be able to wade through my lengthy comments and links at my site linked below where you may find something of use that you are welcome to use on your website. :)

http://katiemiaaghogday.blogspot.com/

I like your use of videos on your website, and recently incorporated music and photographs my spouse and I take of nature, which has spiked my readership from what it was with my long "bland" research paper-like comments, which I have to strive hard to avoid to effectively "emotionally" socially communicate with others, as that is my natural method of communication.

Oops. I forgot to mention length of sentences as another detriment in modern communication. No more than two line sentences are the best. It is very hard for me to do that.

I found the communication on your site pleasurable and easy to read.

Brevity and emotion equals Plus One (+1).

The body of research done on Asperger's IQ is limited, but it has overall been assessed as slightly below the median of 100 at 98. Intellectual disability excludes one from being diagnosed, so overall one would expect it to be a little higher than 100, but it doesn't show up that way in larger studies done with people officially diagnosed. Studies on people with Asperger's selected from the college environment have been in the 120 range, but it is also a stereotype that the majority of people with Asperger's make through college. Many are not likely "socially" communicating anywhere online. Seven lines: ouch, ouch, PAIN in the "Twitterverse". :)

The "Twitterverse" is a society wide phenomenon not an Autism Specific one. I guess I live in an "effective other" time and place.

Seventeen paragraphs now - if you made it this far, perhaps you like bone dry humor. :) Humor is an effective tool to enhance memory in the learning process, when people understand and appreciate the humor. :) This is another "natural" road block for me, in effectively leaving a "lasting" impression in reciprocal social communication. However I can analyze something to death in excruciating detail.

Oh, by the way, or OBTW for brevity and commonly shared urban slang, fear and the empathy of anger is also an "effective" tool to retain readership, which I do not usually employ.

The "Damn moral code" gets in the way. :)

Irony is a cool tool too, along with interesting patterns in words like three words with two "o's".

I personally like using quotes "too" (along with coincidental acausal connections, "synchronicity") to accentuate "special" meaning in words, because I don't "feel" like I am YELLING at people to get their attention with all CAPS. :) After a while, "smiles" get boring; however, I am not good at picking out the complex icons for emotion. :(

"Bet" you never thought you would get that much feedback from one "entity". :) That is a mix of RRBI along with fine tuning reciprocal social communication, as science of "kindology", rather than social instinct, as an "ideological first identity". This "attribute", at times, can "remarkably" resemble "unusual" altruism, or what I describe as "Autistic Love".

If you are still reading at this point, you might be a "unique" human being. Perhaps, on a BAP broader autism phenotype yourself, as that statistical probability is much higher when one has a sibling on the diagnosed spectrum. :)

24 paragraphs, 11 happy faces, 2 links, and 1 sad face; finding myself now entering into "Co-morbid" territory from RRBI to OCD. "With that said", "goodbye and have a nice day" as an "Algorithm" of "small talk" to end a lengthy "monologue", with the end of one more smile to make the paragraphs "half full" instead of "half empty" with positive intent. :)


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11 May 2013, 8:34 pm

No fair, Aghogday burying his humor so far down his post that people don't read it :D .

Now, in all fairness, ASAN is not alone in censoring views they disagree with. Considering how....avid some individuals are about posting negative things about the neurodiversity movement, well, "Brand X" has the right to moderate their online portals as well.

Aghodday, am I correct in my understanding that the Aspie/HFA "difference" per DSM-IV is language acquisition? Ignoring DSM-5 for the next century or so.

As a side note, this may be the first time I've been mentioned in the same sentence as Google for providing assistance. 8)


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BigSister
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11 May 2013, 10:14 pm

Thanks for the help and for the willingness to copy and paste my link. :) In truth, I'm still really new to this whole discussion board thing, so I was having issues linking...

Quote:
If you are still reading at this point, you might be a "unique" human being. Perhaps, on a BAP broader autism phenotype yourself, as that statistical probability is much higher when one has a sibling on the diagnosed spectrum.


For instance, that was my first time (hopefully successfully) using quotes. To address the quote itself, you're 100% on the money with that guess, actually, and wouldn't be the first one to say it. Plus who knows how many others have thought it...probably most people who know about my sister have had that thought, considering the first adjective that comes to mind when people want to describe me is "weird"...I'm not a terribly typical neurotypical. Guess I just fall two standard deviations from the mean, but don't quite make it to three (and with that statement, I think I just proved my lack of typicality, haha). Which could explain why I was immediately drawn to your post The Problem of Determining Who is "Neurotypical" - definitely can relate. I'll keep perusing your blog (did you want feedback of your own, by the way?).

I feel your pain with the length, aghogday - I, too, have trouble keeping things to the point where others will read them. I worked really, REALLY hard to keep my original question short so people would read it - at this point, I'm not limiting myself anymore because I feel like I'm among kindred spirits. :) I work hard on the website to keep things from becoming overwhelmingly long, too. Still don't have many visitors, though, so I don't know how that's working. I also split up Autism Lingo, Intro to Autism, and Autism: The Specifics up into three different articles (they were originally one) to avoid overwhelming people with length...but then ended up overwhelming people with the number of articles. So I ended up creating the Miscellaneous page just to make sure that people didn't get so overwhelmed by the sheer number of articles on the left side-bar (which is why that page may feel a little shoddy...I haven't quite figured out how to set it up yet). It's basically where I hid some articles where the sort of people who get overwhelmed won't see them, and the people who are dedicated and want to learn more will (hopefully) still find them - the thought was to sacrifice the few for the good of the whole. Glad you liked the videos - I figured people were more likely to stick around watching them than reading what I had to say, unfortunately. Personally, I generally prefer text (I am a fast reader, and easily distracted/like to skip around, so it's hard to stick with a video all the way through), but I know most people don't agree.

Google is remarkably un-helpful in some regards - I've made several fairly large websites now, and each time it's because I feel like the internet (via Google) is letting down a group of people in some way (kids whose parents are divorced, high schoolers from my home state where college and career counselors were recently cut, and, yes, people trying to get a balanced, in-depth background about autism). It's a great source for information, but also, unfortunately, misinformation. Plus I feel like when Google lets you down, it's like society is saying "this group doesn't matter." And that bothers me. Anyways, all that was my long-winded and wind-about way of saying, thanks for your help AgentPalpatine...Google isn't always enough.



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12 May 2013, 12:28 am

When it comes to controversy, no-one is truly impartial. However, I read it and I think it would be good the way it is. I also added the site to my favorites so I'll be looking at it from time to time.


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12 May 2013, 3:37 am

AgentPalpatine wrote:
No fair, Aghogday burying his humor so far down his post that people don't read it :D .

Now, in all fairness, ASAN is not alone in censoring views they disagree with. Considering how....avid some individuals are about posting negative things about the neurodiversity movement, well, "Brand X" has the right to moderate their online portals as well.

Aghodday, am I correct in my understanding that the Aspie/HFA "difference" per DSM-IV is language acquisition? Ignoring DSM-5 for the next century or so.

As a side note, this may be the first time I've been mentioned in the same sentence as Google for providing assistance. 8)


I like the good things that ASAN does, and am not suggesting that other organizations do not censor information ever, but there are individuals associated with ASAN that will tell you in advance there are words of political ideology like cure that mean an exit to the door, in opportunity for communication.

I do not like censorship in most forms, even with those that I disagree most vehemently per statements like one hears Michael Savage make on national prime time FM radio any night of the week, he chooses to, about people on disability being a drain on society and worthless.

If there is anyone causing problems for people with disabilities in this country it is voices like that, but it is that freedom of speech that prevents the potential of another "holocaust" as censorship of the media is what made that "holocaust" remotely possible.

If I could succeed in process to censor that voice that I do not consider reasonable; the same process could potentially be used to censor voices of reason. That is not a price I am wiling to pay.

I am little strong on "ideology" rather than playing on anyone's team.. :)

Re: question on HFA/Aspie, it is the "Hyperlexic" language delay that put me in the PDDNOS category.

Gillberg created a criteria for Asperger's syndrome in 1989 based on Hans Asperger's actual case studies, as linked below. It describes an actual unique syndrome which is not what is fully described in DSMIV criteria or ICD10 criteria.

The choice made, instead, was to make Autistic Disorder "lite" by removing the communication impairment criterion and decreasing the number of identical required criterion elements in social interaction and RRBI's.

The Gillberg Criteria has always captured a neurodevelopmental disorder of some type as motor development issues and language impairment and/or speech delay have been mandatory requirements for diagnosis.

PDDNOS or Asperger's syndrome, requirements by DSM or ICD10 alone could technically be met as a result of environmental circumstance alone, because there are no age requirements for symptoms and no actual neurodevelopmental issues, mandatory to be met by objective standards of neurological measure.

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

Effectively speaking, the reason that Asperger's is going away in DSM5 criteria is that it never fully existed in mandatory DSMIV criteria. There was "Autism Lite" for Asperger's and there was "Autism not clearly defined" in PDDNOS.

People who have all the mandatory characteristics of Asperger's syndrome, per Hans Asperger's Gillberg identified characteristics can be captured by DSMIV Autistic Disorder, PDDNOS, or Asperger's syndrome, but potentially misdiagnosed by label in two out of three of those disorders, because of the language development delay exclusion.

The type of language delay associated specific to abnormal brain growth in males and Autistic Disorder is not the same Hyperlexic or Pragmatic Language Impairment delay captured in the Gillberg Criteria for Asperger's syndrome.

Asperger's is an identifiable syndrome separate from Autistic Disorder, that will continue to be diagnosed where Gillberg criteria is still in effect. The people with the syndrome will also be captured by DSM5 criteria, but still not with the full criteria that Gillberg designed from full study and representation of Hans Asperger's case studies.

If the DSMIV in 1994 and ICD10 standard in 1992 had matched what Gillberg set forth in 1989 for Asperger's syndrome it is possible that the syndrome would still exist in both manuals coming per ICD11 and DSM5.

The research would more likely have shown proper specificity in correctly capturing an actual specific syndrome, called Asperger's, in the last couple of decades, instead of what effectively was "Autism Lite" and "Autism not clearly defined" capturing people with Asperger's syndrome and an undefined number of other potential disorders and at least, in part, environmental induced conditions.

I see it as no wonder that Tom Insel, the director of the NIMH. is moving in a direction of Autism research away from the mental disorder/behavioral impairment model of Autism to "brain disorder" instead, as the DSM5 is still too loosely described to capture any one similar neurological condition of origin.

The DSM5 captures an "imaginary" diversity of neurology, per behavioral impairment, which is still a fuzzy area of specificity per neurology.


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12 May 2013, 5:14 am

BigSister wrote:
Thanks for the help and for the willingness to copy and paste my link. :) In truth, I'm still really new to this whole discussion board thing, so I was having issues linking...

Quote:
If you are still reading at this point, you might be a "unique" human being. Perhaps, on a BAP broader autism phenotype yourself, as that statistical probability is much higher when one has a sibling on the diagnosed spectrum.


For instance, that was my first time (hopefully successfully) using quotes. To address the quote itself, you're 100% on the money with that guess, actually, and wouldn't be the first one to say it. Plus who knows how many others have thought it...probably most people who know about my sister have had that thought, considering the first adjective that comes to mind when people want to describe me is "weird"...I'm not a terribly typical neurotypical. Guess I just fall two standard deviations from the mean, but don't quite make it to three (and with that statement, I think I just proved my lack of typicality, haha). Which could explain why I was immediately drawn to your post The Problem of Determining Who is "Neurotypical" - definitely can relate. I'll keep perusing your blog (did you want feedback of your own, by the way?).

I feel your pain with the length, aghogday - I, too, have trouble keeping things to the point where others will read them. I worked really, REALLY hard to keep my original question short so people would read it - at this point, I'm not limiting myself anymore because I feel like I'm among kindred spirits. :) I work hard on the website to keep things from becoming overwhelmingly long, too. Still don't have many visitors, though, so I don't know how that's working. I also split up Autism Lingo, Intro to Autism, and Autism: The Specifics up into three different articles (they were originally one) to avoid overwhelming people with length...but then ended up overwhelming people with the number of articles. So I ended up creating the Miscellaneous page just to make sure that people didn't get so overwhelmed by the sheer number of articles on the left side-bar (which is why that page may feel a little shoddy...I haven't quite figured out how to set it up yet). It's basically where I hid some articles where the sort of people who get overwhelmed won't see them, and the people who are dedicated and want to learn more will (hopefully) still find them - the thought was to sacrifice the few for the good of the whole. Glad you liked the videos - I figured people were more likely to stick around watching them than reading what I had to say, unfortunately. Personally, I generally prefer text (I am a fast reader, and easily distracted/like to skip around, so it's hard to stick with a video all the way through), but I know most people don't agree.

Google is remarkably un-helpful in some regards - I've made several fairly large websites now, and each time it's because I feel like the internet (via Google) is letting down a group of people in some way (kids whose parents are divorced, high schoolers from my home state where college and career counselors were recently cut, and, yes, people trying to get a balanced, in-depth background about autism). It's a great source for information, but also, unfortunately,
misinformation. Plus I feel like when Google lets you down, it's like society is saying "this group doesn't matter." And that bothers me. Anyways, all that was my long-winded and wind-about way of saying, thanks for your help AgentPalpatine...Google isn't always enough.


Google is only as good as the people who write on the internet. Algorithms are one of my special interests. :)

Google is a "souless" algorithm "beast". So is the algorithm on facebook. People that are not fully versed with Agorithms will assign all types of anthropomorphic intention to them that does not exist.

There is a facebook moderator that broke ranks making a site called the "internet offends me" that provides an excellent analysis of how "cold hearted" internet algorithms are. The site can be found in a google search but the guy is an anti-censorhip fanatic and uses some examples that aren't entirely age 18 and under appropriate. They are not at all obscene, but I would rather not link it on this "family friendly" website.

The key to getting exposure in Google to get a message to other people is to play the game of the algorithm. One simple way of doing that is coming up with phrases and terms that no one else has thought of in the "Googleverse". I just checked someone else thought of Googleverse, so it won't work.

I came up with the term "neuroextraterrestrialdiversity" to express a core issue of difficulty with Autism acceptance, and that one is far out there enough where it had not entered the "Googleverse".

People on the spectrum get a lot of exposure on Google because of the RRBI nature of the spectrum. As an example I will use myself, in literally typing over 5 million words in the last 2 and a half years.

There is almost no word that one can miss with a combination of aghogday and another other word, in Google, except for the pejoratives that I do not use. The word aghogday is not a word that anyone else has felt the need to describe them self as an anonymous user name. It simply means Another ground hog day to me, when I was going through some particularly challenging immune system issues.

I used my facebook family name Katie Mia separately as both name and acronym and eventually joined the two together for double exposure to get what I thought might be helpful messages out to other people, not just on the spectrum but the broader autism phenotype too, with no commercial interest for me in that endeavor.

It is an RRBI where the reward is in the behavior alone.

The thing is, though, the Algorithm is designed to capture and hold hostage people whose RRBI behavior goes to extreme in google results as identified spambot instead of human. I dedicate several of my posts in my blog in amusement of my autistic relationship with the algorithm in competition to understand "each others" "communication". :)

I am always open to feedback, and you always welcome to provide it to me. :)

I take good care of kindred spirits; your blog has already been entered into a link in my latest blog post, per your post that inspired my response that I observed as unusual enough to warrant a blog post, which might be helpful to someone like you or me. :)

I do not quote people's user names or statements on this site, as that is against the site rules. I do occasionally link relevant discussions by link alone as they are already available by google search alone. There is a push in the larger autism communities to make a variety of opinions heard, and that is one way to make it happen above and beyond what google does by algorithm alone. There are also many people on the broader autism phenotype that have no idea this website exists, that have thanked me for turning them on to it, as they could not find acceptable support for their social communication anywhere else online.

I use the phrase Autistic Love and the Science of Kindology in my latest blog post. It is an instant hook for the curiosity seeking Broader Autism Phenotype persons usually looking to find the meaning in every pattern or code. Another unique one that hasn't entered the "Googleverse".

There is a similar "hyperlexic" thinking person on this site that has what appears to be a "nonsensical phrase" in their signature line from first glance, that I know has deeper meaning and still trying to fully figure out what it means per "autistic code".

I can almost picture it in my mind, but I cannot remember anyone else's signature line because they are not unusual in that way. Their blog is called "autisticandawesome" and it sits atop the blogs I recommend on my blogsite as a unique perspective on the spectrum worth checking out.

Agent Palpatine is a hard one to forget, because it reminds me of that old show "Get smart", per the word agent used on that show. :) I would never remember it if it was Palpatine alone. Start a blog Agent Palpatine and I will link it there. The only blogs I would refuse to link are those that exclude anyone from participating on the spectrum based on ideology alone. Vehement disagreement is okay in my opinion, but unreasonable censorship is not part of my game.

The way of the autistic or what I call the "duckyway", (type in the word to see the search results on top of a google search) is often out of the box, but it is the essence of thinking in a unique and different way, that people on the spectrum can see evidence of in Google, as it "Algorithmically" supports creativity in words beyond any other attribute, other than "those images" that fire fox adblock can rid one's browser of.

Another example is the viral notion that people were typing in "Autistics should be killed" in the random math generated key word Google algorithm auto search results, where there were actually only 7 real "exact" phrase search results, before it was brought to the Autism Community attention.

Google corporation complied by blocking the algorithm results for auto-complete; however, as a result of the attention by the Autism Community in discussing it as a purely rhetorical issue on the internet, there are now close to 25,000 actual exact phrase search results spread out across the "Googleverse" to look at in first disgust, before one figures out, if they actually click on the link and thoroughly peruse it that it is only a rhetorical discussion against not for the "disgusting sounding idea".

The google/facebook/internet algorithm has no keenly developed sense of cognitive empathy. It cannot easily tell the difference between rhetoric and malice of intent.

Sorry, I also felt comfortable among kindred spirits in discussing another special interest in "exhaustive" detail. :)

And ironically enough, the cloudflare algorithm that protects this site against spam bots, determined I might not be human as this type of writing behavior does not fit the "social norm", when I clicked preview to review for edit.

I type in the captcha knowing that the algorithm is only doing the job it is "paid" to do, and it is nothing personal against me, but I better modify my behavior a little in the next comment, and not use so many different words, like those spambots often do to gain the attention of others, which is in essence what this autistic person naturally does in communication, with or without intention, of gaining positive attention for a larger positive message for the good I see in life, in my own personal RRBI. :)


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12 May 2013, 11:40 am

aghogday wrote:

Gillberg created a criteria for Asperger's syndrome in 1989 based on Hans Asperger's actual case studies, as linked below. It describes an actual unique syndrome which is not what is fully described in DSMIV criteria or ICD10 criteria.

The choice made, instead, was to make Autistic Disorder "lite" by removing the communication impairment criterion and decreasing the number of identical required criterion elements in social interaction and RRBI's.

The Gillberg Criteria has always captured a neurodevelopmental disorder of some type as motor development issues and language impairment and/or speech delay have been mandatory requirements for diagnosis.

PDDNOS or Asperger's syndrome, requirements by DSM or ICD10 alone could technically be met as a result of environmental circumstance alone, because there are no age requirements for symptoms and no actual neurodevelopmental issues, mandatory to be met by objective standards of neurological measure.

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

Effectively speaking, the reason that Asperger's is going away in DSM5 criteria is that it never fully existed in mandatory DSMIV criteria. There was "Autism Lite" for Asperger's and there was "Autism not clearly defined" in PDDNOS.

People who have all the mandatory characteristics of Asperger's syndrome, per Hans Asperger's Gillberg identified characteristics can be captured by DSMIV Autistic Disorder, PDDNOS, or Asperger's syndrome, but potentially misdiagnosed by label in two out of three of those disorders, because of the language development delay exclusion.

The type of language delay associated specific to abnormal brain growth in males and Autistic Disorder is not the same Hyperlexic or Pragmatic Language Impairment delay captured in the Gillberg Criteria for Asperger's syndrome.

Asperger's is an identifiable syndrome separate from Autistic Disorder, that will continue to be diagnosed where Gillberg criteria is still in effect. The people with the syndrome will also be captured by DSM5 criteria, but still not with the full criteria that Gillberg designed from full study and representation of Hans Asperger's case studies.

If the DSMIV in 1994 and ICD10 standard in 1992 had matched what Gillberg set forth in 1989 for Asperger's syndrome it is possible that the syndrome would still exist in both manuals coming per ICD11 and DSM5.

The research would more likely have shown proper specificity in correctly capturing an actual specific syndrome, called Asperger's, in the last couple of decades, instead of what effectively was "Autism Lite" and "Autism not clearly defined" capturing people with Asperger's syndrome and an undefined number of other potential disorders and at least, in part, environmental induced conditions.


Aghogday, is there any chance you can summarize the above? I'm not following what you're saying, but I think that it would make sense if you summarized it (to me at least).


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12 May 2013, 7:00 pm

AgentPalpatine wrote:
aghogday wrote:

Gillberg created a criteria for Asperger's syndrome in 1989 based on Hans Asperger's actual case studies, as linked below. It describes an actual unique syndrome which is not what is fully described in DSMIV criteria or ICD10 criteria.

The choice made, instead, was to make Autistic Disorder "lite" by removing the communication impairment criterion and decreasing the number of identical required criterion elements in social interaction and RRBI's.

The Gillberg Criteria has always captured a neurodevelopmental disorder of some type as motor development issues and language impairment and/or speech delay have been mandatory requirements for diagnosis.

PDDNOS or Asperger's syndrome, requirements by DSM or ICD10 alone could technically be met as a result of environmental circumstance alone, because there are no age requirements for symptoms and no actual neurodevelopmental issues, mandatory to be met by objective standards of neurological measure.

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

Effectively speaking, the reason that Asperger's is going away in DSM5 criteria is that it never fully existed in mandatory DSMIV criteria. There was "Autism Lite" for Asperger's and there was "Autism not clearly defined" in PDDNOS.

People who have all the mandatory characteristics of Asperger's syndrome, per Hans Asperger's Gillberg identified characteristics can be captured by DSMIV Autistic Disorder, PDDNOS, or Asperger's syndrome, but potentially misdiagnosed by label in two out of three of those disorders, because of the language development delay exclusion.

The type of language delay associated specific to abnormal brain growth in males and Autistic Disorder is not the same Hyperlexic or Pragmatic Language Impairment delay captured in the Gillberg Criteria for Asperger's syndrome.

Asperger's is an identifiable syndrome separate from Autistic Disorder, that will continue to be diagnosed where Gillberg criteria is still in effect. The people with the syndrome will also be captured by DSM5 criteria, but still not with the full criteria that Gillberg designed from full study and representation of Hans Asperger's case studies.

If the DSMIV in 1994 and ICD10 standard in 1992 had matched what Gillberg set forth in 1989 for Asperger's syndrome it is possible that the syndrome would still exist in both manuals coming per ICD11 and DSM5.

The research would more likely have shown proper specificity in correctly capturing an actual specific syndrome, called Asperger's, in the last couple of decades, instead of what effectively was "Autism Lite" and "Autism not clearly defined" capturing people with Asperger's syndrome and an undefined number of other potential disorders and at least, in part, environmental induced conditions.


Aghogday, is there any chance you can summarize the above? I'm not following what you're saying, but I think that it would make sense if you summarized it (to me at least).


Sure, maybe this approach will be more concise.

This is Autistic Disorder: DSMIV

6 total impairments from the elements below under A, B, and C

A Social interaction
B Communication
C RRBI

This is Asperger's Syndrome: DSMIV

2 out of 4 impairments from the elements under A which is the exact same elements for Autistic Disorder for Social Interaction

A Social Interaction

1 out of 4 Impairments from the elements under C which is the exact same elements for Autistic Disorder for RRBI's

C RRBI

This is PDD NOS: DSMIV

Impaired social interaction; and (verbal or nonverbal communication deficits) or repetitive, stereotyped behaviors and restricted interests.

No details are provided in the DSMIV-TR as to what the impairments might specifically be in that criteria description, so it is almost completely open to subjective judgement by the diagnosing professional if they go strictly by the DSMIVTR guideline.

Under DSMIV 1994 guidelines because of an editorial error, corrected in 2000, it was 1 out of 3 instead of 2 out of 3 generally described impairments of Social Interaction, Communication, and RRBI's.

This is Asperger's Syndrome: Gillberg Criteria

9 total impairments from the elements below under A,B,C,D,E,F

A Social Interaction
B All absorbing Narrow Interests
C Imposition of Routines and Interests
D Speech and Language Problems
E Non-Verbal Communication Problems
F Motor Clumsiness: poor performance on neurodevelopmental examination

This is ASD: DSM5

A Social Communication: 3 out of 3 criterion elements required

B RRBI: 2 out of 5 criterion elements required which may be met by client history alone, not required present at diagnosis.

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Looking at the 5 different criteria it seems obvious to me that Gillberg was describing a real syndrome and not a loosely defined and described criteria, where criterion was cut and pasted per what the DSMIV approach was to Asperger's syndrome.

The DSMIV took the easy road instead of the map provided by Hans Asperger that Gillberg used to design a real criteria for what Hans Asperger's described as "Autistic Psychopathy"

The Gillberg criteria is close to as effective in capturing Autistic Disorder as the DSMIV criteria is in capturing that disorder.

The DSMIV criteria is not effective in specificity per what Gillberg describes as Asperger's syndrome.

In other words he provides the specifics of an actual syndrome whereas the DSMIV fails to do that with Asperger's in effectively designing a criteria for "Autistic Disorder Lite".

There are likely may people diagnosed with HFA that could be diagnosed under Gillberg Criteria for Asperger's Syndrome, if the criteria was available in the US, as the language and speech impairments are a mandatory requirement instead of an exclusion for diagnosis.


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13 May 2013, 9:43 am

I know that ABA can be terribly divisive. My sister is an ABA therapist and even though she is incredibly sensitive and caring from the outside it certainly looks controversial. I also recently produced a film about autism that features a therapist, though she is never identified as ABA or not. But the discussion on therapy for low functioning persons affected by autism, as well as access to facilities for adults without parents, government care, and living in society for low functioning persons can all be very difficult and is needs to happen in a discussion rather than a statement of facts.

And I agree with ahgohday that the internet is not designed to facilitate an open discussion, but rather catalogues information. The algorithms can become more accurate, but the only way to really impact the discussion is to either take advantage of the system or to take it to the streets. I actually helped make NightLights to give an opportunity for that discussion. And forums like these are such a wonderful way to have it happen.


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13 May 2013, 5:13 pm

NightLights wrote:
I know that ABA can be terribly divisive. My sister is an ABA therapist and even though she is incredibly sensitive and caring from the outside it certainly looks controversial. I also recently produced a film about autism that features a therapist, though she is never identified as ABA or not. But the discussion on therapy for low functioning persons affected by autism, as well as access to facilities for adults without parents, government care, and living in society for low functioning persons can all be very difficult and is needs to happen in a discussion rather than a statement of facts.

And I agree with ahgohday that the internet is not designed to facilitate an open discussion, but rather catalogues information. The algorithms can become more accurate, but the only way to really impact the discussion is to either take advantage of the system or to take it to the streets. I actually helped make NightLights to give an opportunity for that discussion. And forums like these are such a wonderful way to have it happen.


Thanks for coming here and providing a link to the trailer for the movie. It looks like a compelling story that more fully addresses the human element of this discussion.


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13 May 2013, 5:21 pm

aghogday wrote:
NightLights wrote:
I know that ABA can be terribly divisive. My sister is an ABA therapist and even though she is incredibly sensitive and caring from the outside it certainly looks controversial. I also recently produced a film about autism that features a therapist, though she is never identified as ABA or not. But the discussion on therapy for low functioning persons affected by autism, as well as access to facilities for adults without parents, government care, and living in society for low functioning persons can all be very difficult and is needs to happen in a discussion rather than a statement of facts.

And I agree with ahgohday that the internet is not designed to facilitate an open discussion, but rather catalogues information. The algorithms can become more accurate, but the only way to really impact the discussion is to either take advantage of the system or to take it to the streets. I actually helped make NightLights to give an opportunity for that discussion. And forums like these are such a wonderful way to have it happen.


Thanks for coming here and providing a link to the trailer for the movie. It looks like a compelling story that more fully addresses the human element of this discussion.



My pleasure, we're most interested in helping families and persons that deal with autism everyday and we hope the film can open up discussions like these. I would love to ask with that in mind what are somethings you and others think about the need of accurate representation of autism and therapy in films. NightLights features several therapy sessions which, though brief, factor heavily into the story. Do you have some memories where therapy was helpful? or harmful?


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NightLights is a feature film starring Shawna Waldron and is based on real-life families living with autism everyday. To support the film and message visit www.nightlightsmovie.com


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13 May 2013, 5:57 pm

NightLights wrote:
aghogday wrote:
NightLights wrote:
I know that ABA can be terribly divisive. My sister is an ABA therapist and even though she is incredibly sensitive and caring from the outside it certainly looks controversial. I also recently produced a film about autism that features a therapist, though she is never identified as ABA or not. But the discussion on therapy for low functioning persons affected by autism, as well as access to facilities for adults without parents, government care, and living in society for low functioning persons can all be very difficult and is needs to happen in a discussion rather than a statement of facts.

And I agree with ahgohday that the internet is not designed to facilitate an open discussion, but rather catalogues information. The algorithms can become more accurate, but the only way to really impact the discussion is to either take advantage of the system or to take it to the streets. I actually helped make NightLights to give an opportunity for that discussion. And forums like these are such a wonderful way to have it happen.


Thanks for coming here and providing a link to the trailer for the movie. It looks like a compelling story that more fully addresses the human element of this discussion.



My pleasure, we're most interested in helping families and persons that deal with autism everyday and we hope the film can open up discussions like these. I would love to ask with that in mind what are somethings you and others think about the need of accurate representation of autism and therapy in films. NightLights features several therapy sessions which, though brief, factor heavily into the story. Do you have some memories where therapy was helpful? or harmful?


I was a non-verbal child until age 4, but my verbal delay was associated with the condition of "Hyperlexia", where there is also a type of "splinter skill" in decoding symbols in the environment. which include unusual precocious reading skills. That does not appear to be a similar issue that is addressed in the movie, per that type of reciprocal social communication difficulty. Hyperlexia is common among the subgroup of individuals diagnosed with "HFA" in the USA under the DSMIV, instead of the Gillberg Criteria Asperger's syndrome in Sweden, that allows for that type of "Hyperlexic" verbal delay.

I think in my case ABA therapy for my Hyperlexic language delay might have been counterproductive, except that I was a "wanderer" and a "bolter" that ran into traffic before I could speak without any fear of the traffic.

There was no awareness of Autism and this potential danger at that time, so I was fortunate that a man stopped his car, picked me up. and brought me back to my mother, who could not understand why I darted across a fairly large yard suddenly and made it to the road before she could catch me. The guy was disgusted at my mother, but she had no idea that she could not afford to take her eyes off of me for even one second when I was outdoors.

My problems lie within connection of language and emotion, and in my case music therapy has been the thing that provided me the ability to communicate better with people combining emotion with language.

It was my own trial and error adaptation of therapy that was not provided with intent of structured therapy.

Alexithymia is prevalent among 85% of people on the spectrum. This type of Music therapy is gaining credence in research to help better develop the ability for reciprocal social communication with other people, which includes that emotional affect of contact, that music can enhance.

The method used in the new therapy is one of tapping drums, for the children on the spectrum who benefit from this new "ground breaking" therapy that is not ground breaking to me per benefit I saw in it years ago, before I was diagnosed on the spectrum in mid-life.

One suggestion I will offer to you, as far as spreading the positive message of your movie, is to avoid the phrase "living with autism everyday", as that is a huge point of controversy and potential "negative emotional trigger", in the Autism Community online for those people that viewed a documentary with that name, that has since been removed from the Autism Speaks awareness effort, because of a statement that was made in that movie about an irrational thought of filicide that a VP of the organization, at that time, made in the movie.

People who think in pictures can often vividly visually recollect moving pictures of things they have seen in their past, if there is a symbol (in this case a familiar phrase of words), that remind them of those moving pictures in memory. That of course is not an issue specific to Autism, but it may be more intense for some people on the spectrum than for most other people with that general visual leaning cognitive map of the world.


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13 May 2013, 6:37 pm

aghogday wrote:
NightLights wrote:
aghogday wrote:
NightLights wrote:
I know that ABA can be terribly divisive. My sister is an ABA therapist and even though she is incredibly sensitive and caring from the outside it certainly looks controversial. I also recently produced a film about autism that features a therapist, though she is never identified as ABA or not. But the discussion on therapy for low functioning persons affected by autism, as well as access to facilities for adults without parents, government care, and living in society for low functioning persons can all be very difficult and is needs to happen in a discussion rather than a statement of facts.

And I agree with ahgohday that the internet is not designed to facilitate an open discussion, but rather catalogues information. The algorithms can become more accurate, but the only way to really impact the discussion is to either take advantage of the system or to take it to the streets. I actually helped make NightLights to give an opportunity for that discussion. And forums like these are such a wonderful way to have it happen.


Thanks for coming here and providing a link to the trailer for the movie. It looks like a compelling story that more fully addresses the human element of this discussion.



My pleasure, we're most interested in helping families and persons that deal with autism everyday and we hope the film can open up discussions like these. I would love to ask with that in mind what are somethings you and others think about the need of accurate representation of autism and therapy in films. NightLights features several therapy sessions which, though brief, factor heavily into the story. Do you have some memories where therapy was helpful? or harmful?


I was a non-verbal child until age 4, but my verbal delay was associated with the condition of "Hyperlexia", where there is also a type of "splinter skill" in decoding symbols in the environment. which include unusual precocious reading skills. That does not appear to be a similar issue that is addressed in the movie, per that type of reciprocal social communication difficulty. Hyperlexia is common among the subgroup of individuals diagnosed with "HFA" in the USA under the DSMIV, instead of the Gillberg Criteria Asperger's syndrome in Sweden, that allows for that type of "Hyperlexic" verbal delay.

I think in my case ABA therapy for my Hyperlexic language delay might have been counterproductive, except that I was a "wanderer" and a "bolter" that ran into traffic before I could speak without any fear of the traffic.

There was no awareness of Autism and this potential danger at that time, so I was fortunate that a man stopped his car, picked me up. and brought me back to my mother, who could not understand why I darted across a fairly large yard suddenly and made it to the road before she could catch me. The guy was disgusted at my mother, but she had no idea that she could not afford to take her eyes off of me for even one second when I was outdoors.

My problems lie within connection of language and emotion, and in my case music therapy has been the thing that provided me the ability to communicate better with people combining emotion with language.

It was my own trial and error adaptation of therapy that was not provided with intent of structured therapy.

Alexithymia is prevalent among 85% of people on the spectrum. This type of Music therapy is gaining credence in research to help better develop the ability for reciprocal social communication with other people, which includes that emotional affect of contact, that music can enhance.

The method used in the new therapy is one of tapping drums, for the children on the spectrum who benefit from this new "ground breaking" therapy that is not ground breaking to me per benefit I saw in it years ago, before I was diagnosed on the spectrum in mid-life.

One suggestion I will offer to you, as far as spreading the positive message of your movie, is to avoid the phrase "living with autism everyday", as that is a huge point of controversy and potential "negative emotional trigger", in the Autism Community online for those people that viewed a documentary with that name, that has since been removed from the Autism Speaks awareness effort, because of a statement that was made in that movie about an irrational thought of filicide that a VP of the organization, at that time, made in the movie.

People who think in pictures can often vividly visually recollect moving pictures of things they have seen in their past, if there is a symbol (in this case a familiar phrase of words), that remind them of those moving pictures in memory. That of course is not an issue specific to Autism, but it may be more intense for some people on the spectrum than for most other people with that general visual leaning cognitive map of the world.



That is incredibly helpful, thankyou. I know our goal is to discuss families and persons affected and there are definitely a lot of words and phrases to keep an eye out for. Would you mind sharing some other negative words that you find are used wrongly or too often? I have heard repeatedly that "autistic" is a trigger word as well, is that accurate or are there others?


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NightLights

NightLights is a feature film starring Shawna Waldron and is based on real-life families living with autism everyday. To support the film and message visit www.nightlightsmovie.com