Curious: What exactly do we hate about Autism Speaks?

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No offence, but if you read the post I didn't say the forum created anything. I said certain people kept on homing on the extremes of autism. Reading this page you should obviously see vermontsavant saying that aghogday was talking about 'degenerative' autism like it was some norm.

you asked what is wrong with this forum after you spoke of the videos, so it was unclear if you understood who had created them. so why don't you think people should talk about degenerative autism?

Well I wouldn't know because I never said what you claimed?

Again hyperlexian, my words are twisted, and again, it's an accusation. I said vermontsavant said that aghogday was portraying this 'degenerative' autism like it was the norm. Why don't you more closely read what I say?

Those are Marketng tools.

When in 99% of cases it would take an in depth look to even guess at Autism, a vidio of a Terrible Two drawing on the walls, and throwing a tantrum can be used to market wall cleaner.

What I am calling for, some explaining of how behavior can be modified, when that might be justified, with long term follow up, is answered with thousands of studies that disagree about basic math, over a time period where the description of Autism has gone through many changes, somehow covers any treatment preformed, and unites it into a single body of Scientific Research, which cannot be questioned, unless I have the same Degree.

Being older, I was around before those Degrees where Psych leads to the highest unemployment, taking at least a Masters to get a low paying job. So I do see it as an industry built in search of employment.

Shy children need Professional Treatment? There was some funding for Autism, so suddenly there is an epidemic of all childhood disabilities being called Autism.

There is no treatment for Mental Retardation, so call it Autism. There are no drugs for Autism, so claim a comorbid condition. That is what happens when there are no standards, and the people making money are the same ones making the rules.

My one question, "Are there any treatments for Autism shown to work?"

Pages have been spent evading answering the question. Studies that do not agree about basic things like numbers, and come from a time when massive drug use was the only profitable answer, till the Law stepped in.

All the Cure People have done is broaden the use of the word Autism, which has caused it to lose meaning. Recently I have seen it used in the plural, Autisms, there are now lots of Autisms.

Shock Video has replaced Science. This is Marketing running wild, and I can think of no other Medical Condition treated the same.

Every generation before this one had children. There is no definable change, Most are terrible twos for a year, some for several years. Some speak late, others can speak but don't, their patterns of learning and maturing cover a wide possible path.

The Standards for being a Human are low, almost all outgrow childhood, and even the rare cases that don't, find a place in life as The Village Idiot. They may require lifetime support from family, but in general are allowed to walk about on their own. This has worked for hundreds of years.

The Basic, all Children are Disabled. They lack mental development and are unable to care for themselves. With enough Mac and Cheeze, Chicken Strips and Tatter Tots, and a supply of quarters, they will slowly get over it, and become disabled University students.

Very little has been shown to speed up this process, and most of that has adverse affects on other parts of development. Education for one seems overdone. School has replaced childhood, as day care for factory workers children, when we no longer have factories.

Sixty years ago little girls were given soft cloth dolls to hug, Raggity Ann, a comforting friend to sleep with. She was replaced with Barbie, who is cold hard plastic, an unreal physical image, and has everything, but a job, education, and is a Materialist Hedonist.

More recently Barbie has been replaced with a more obtainable image, which is smaller, shows less physical development, has more childlike features, wears little girl clothes, but also makeup, poses like an MTV girl, struts her little stuff, and carries a purse for her trick money. Bratz Dolls obviously work for a living, starting young on the streets.

Little girls can still sleep with their dolls, if they have the twenty bucks.

All of history says people grow at their own speed, and develop into some place in life. There is no standard path, no standard model, and I find standard education is likely limiting the range of human thought.

Conformity is everyone becoming a Real Estate Agent. Opps, we did that.

Conformity is everyone becoming an MBA, and offshoreing production, Opps, we did that.

Conformity is everyone becoming a Mental Standard Human,

Autism, a differance of thought and perception, must be preserved.

ok here it is, completely untwisted:

no accusations here. you have the opportunity to clarify anything that has been misunderstood.

so let me clarify to see if i get where you are going with this. thanks for the clarification. you don't think that people should post videos of degenerative autism as representative of autism on WrongPlanet because you don't think it represents the norm. yes?

do you have some better examples of videos that people should post instead?

What? My problem isn't that they demonstrate it at all. My problem is that they take the extremest aspect and blow it out of proportion, constantly

I even just told you that on the last page:


I mean, come on, hyper. Not twisted, just 3/4ths of the what I said taken out

Regressive Autism is a clinical term used to describe those children between the age of 15 and 30 months that appear to be developing normally and then lose speech and social skills. I really haven't provided a detailed description of it. Instead provided a basic description, where some young children with autism lose their ability to speak after gaining words, and provided some research associated with it.

Here is Wiki's description:

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





Now here is Wiki's description of Childhood Disintegrative Disorder:

To this point I haven't attempted to provide a description of Childhood Disintegrative Disroder.

Difference being here that motor skills are also lost along with speech and social skills, also the onset of the Disorder occurs later in life, anywhere from 2 to 10 years of age.

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





And finally the disorder, currently part of the Autism Spectrum, that is rarely discussed in any autism forum, Rett's Syndrome:

http://www.wrongplanet.net/forums-posting-quote-p-4247145.html



Kanner's Syndrome/Classic autism are older terms now used loosely by some people to describe what they call low functioning autism.

Autism Disorder with co-morbid cognitive deficits are used to describe it in the modern clinical setting.

Here is the description of of Kanner's Syndrome, originally described by Leo Kanner in the 40's.

http://medical-dictionary.thefreedictionary.com/Kanner's+syndrome

tl;dr

Because as per my last post to Vermont Savage, it is a complex issue.

Before 1980 all Autism was associated with Kanner's Type Autism, per description of Kanner's Type Autism provided in my last post. There was no DSM diagnostic criteria before 1980 for Autism Spectrum Disorders.

Fast forward to 2011, and we now have PDD NOS, Aspergers, Rett's Syndrome, and Childhoood Disintegrative Disorder, along with Autism Disorder that comprise Autism Spectrum Disorders.

In addition changes in diagnostic criteria from 1980 to the present day have changed drastically in some of these disorders.

What this can lead to is a great deal of confusion, on what is what, who is what, and how many is what.

Statistics provided before 1980 on Autism reflect Kanner's Type Autism.

Statistics after 1980 reflect the changes through time, that occured in the additions of defined disorders and criteria associated with the current 5 disorders that comprise the modern spectrum of Autism disorders.

And, in addition, the scientific methodology of measuring the statistics, has changed through time as well.

Many of these research articles presented here on this site, are directed at the Scientific Community that are experts on these facts, understanding the complexity of the evolution of how autism spectrum disorders have been defined and described through the last several decades.

So, when a statistic is presented in these articles like, 50% of autism was regressive in 1979, that statistic is understood by experts as qualified by a much smaller autistic demographic confined to Kanner's Type Autism before 1980.

While the statistic was considered a valid statistic from peer reviewed research in 1979, it no longer applies to the totality of autism spectrum disorders, that now comprise 5 disorders, as compared to one severely disabling condition called Kanner's Type autism in 1979.

The reason I have focused on regressive autism in this particular discussion, is because it was the main driving force behind the organization and focus of Autism Speaks, the topic of the current discussion, of why people hate Autism Speaks.

The issue becomes one at times, that the negative portrayal of regressive autism portrayed is a misrepresentation of autism, because the entire spectrum is not comprised of individuals with autism that have lost the ability to communicate.

I have tried to provide clarification, that it is because this is the part of the spectrum that the organization admittingly, first and foremost focuses on. Therefore, historically, much of what we have seen out of this particular organization is focused on that intent.

For those that wish to support an organization that focuses more on the part of the spectrum that the organization does not put their main focus on, there are many other organizations that dedicate their main focus on other parts of the Spectrum as well, such as the Aspergers Association of New England, the Rett's Disorder organizations, and Childhood Disintegrative Disorder organizations, etc.

There is no one organization/source that I am aware of that provides equal focus on all 5 autism spectrum disorders.

The spectrum is much too complex, to expect one organization to do it all, providing the needs of all of those that are part of the entire autism spectrum.

If people thought that it were a complex issue certain people here wouldn't instantly portray all autism as severe, or only look at the severe side, or accuse people who dislike like said typecasting as seeing the severe side as not autistic

I don't think you got the point of what I said at all. I was making criticism of simple mistakes and issues. Did you not read the bit with simple spelling mistakes?

This is Vermont Savages exact quote, his interpretation was that I was describing childhood disintegrative disorder, and I provide clarification that I wasn't, in my next post backed up by Wiki, that you felt was too long to read.

You state: "I said vermontsavant said that aghogday was portraying this 'degenerative' autism like it was the norm".

No where in Vermont Savage's statement above or anywhere else on this site does he imply that I was portraying this degenrative autism like it was the norm, it exists nowhere in the record on this internet site.

He understands that Childhood Disintegrative Disorder is a very rare disorder, 1.7 cases per 100,000, as I do, and as identified in the Wiki Articles that you felt were too long to read.

He only questioned that I was mis-describing a condition as Childhood Disintegrative Disorder.

Inventor suggested that all autism is regressive, of which I did not agree with, and provided research to back up my disagreement on his opinion.

Since you didn't read the definitions of these disorders that I provided, Regressive Autism as described in the two wiki definitions is a different condition than Childhood Disintegrative Disorder, that occurs in about 25 to 30 percent of all autism spectrum disorders.

I haven't even addressed Childhood Disintegrative Disorder, in this Discussion, until I provided the definition, although Vermont Savage thought that I was mis-describing it.

For starters his name is vermontsavant. No offence, just you seem to keep misreading things. Although I can't be bothered to go through a huge load of mesmerising 1-sentence paragraphs

Second:


Whatever you were talking about you were marrying up concepts of severe disorders with classic autism and vermontsavant said that may be wrong. I am not going to get in to overbearingly fine detail, because it's easy to slip up, as you already did when you took my comment 'regressive' autism too literally.

Many people don't understand the complexity of the issue, and there is no reasonable way they could, unless they did intensive research into the issue. This site is a place where those issues are discussed, some have researched the issue more than others, and can benefit from that time and effort taken, if they choose to.

The only discussion about simple spelling mistakes that I have seen you point out is in a completely different topic, that was a typo in a commercialized website of the words from and form, from a standard statement on the description of Aspergers that many sites have cut and pasted.

It happens in online publications like USA today, and almost everywhere else in the world. You discredited the statement because of that typo; that's why there is a comments sections on websites where typos can be corrected.

I've found typos on USA today, myself and sent in corrections. Apparently to this point it hasn't bothered anyone enough for anyone to complain, on these much smaller websites.

There is no place in the record here on this forum that I have seen where anyone has portrayed all Autism as Severe, unless you have misread what has been said. You've been here a few days, so it shouldn't be too hard for you to provide the quote if it exists.

The reality is that some diagnosed cases of Autism are severe. If one takes the time to do any research that part is crystal clear, completely confirmed, and it is not something that can be denied as the truth. It is worthwhile of discussion on a support site for Autism like World Planet.

There are also cases of individuals that have been diagnosed with autism that have some level of power and influence and are highly functional.

Ari-Neeman the leader of ASAN, diagnosed with Aspergers has been appointed by the President of the US to serve in an organization that represents the rights of the disabled.

This aspect of autism is also worthwhile of discussion on a support site for Autism like World Planet.

As stated before, at this point in time you are in a discussion about Autism Speaks an organization that does first and foremost focus on the part of the autism spectrum that is more disabling.

There are other forums and discussions on high IQ and autism that have a completely different flavor. Where you are at on the website has a great deal to do with what part of the spectrum is being discusssed.

I didn't say that people outright said all autism was severe. I am sorry, but I said people were portrying it as such. You have misrepresented my words

Now you're just implying that just because somebody's high functioning then they wont care about people who are 'regressive'.

I wasn't even talking about this. I was saying this:
Why is it that certain people keep homing on the extremes of autism all the time? Videos of low-func this, expressions of degenerative that

Quit bringing in your problems with asperger's with influence in to this. You wouldn't think a guy who defends a group called autism speaks would have a problem with autistics speaking.

Last edited by MarcusTulliusCicero on 16 Dec 2011, 5:24 pm, edited 1 time in total.

thank you for the clarifacation aghogday.i misunderstood you.i did not realize you were talking about loss of speech that young.i didnt know babies in generalcould talk that young.CDD would occur much later in childhood as you said.was i rude,i wasnt sure why i was called vermont savage.if i was rude i appologize

You weren't rude by any means. aghogday simply kept making a mistake.