Anybody else fed up?

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Unfortunately spokespeople for the ASAN have not shown up on this forum at least to my knowledge.

I suggest that we all come to some kind of gentleman's agreement on thread protocol.

I would suggest that, upon starting a thread, that we send a polite request to any members that we feel will not make a positive contribution to the thread to refrain from making comment on the thread. However, we should disclose in the originating post that such a request has been sent.

The poster should then respect such a request,

That's my idea; anybody got a better one?

i agree to that

Suggestion rejected.

Everyone has a right to contribute to any thread they feel like contributing to.

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So far as the specific poster you allude to... I have stated that I find their posts incomprehensible. I will occasionally reply, but in general, I just rely on them to make themselves known as meaningless.

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On the subject of ASAN... I find them not to be entirely to my taste, but completely sincere and correct in their advocacy.

Here, in the UK, we seem to be doing quite well in getting the public to understand us. Elsewhere, the situation seems generally to be less enlightened. Hopefully that will change. I don't think saying "it's all OK already" will help matters.

If you are talking about the few (2) that seem to go on and on about autism superiority and N.T oppression around every corner it's best to reply with sensibility then ignoring them. As far as the OP in this topic goes he has some of the worse approaches possible. Name calling, put downs and so on. The above poster I've asked that he ask me questions if he doesn't understand. So if he is referring to me when I know many understand what I say in person and online then perhaps the refusal to understand is simply in context hoping no one else will understand as he does not agree.

As usual, I don't understand what you mean to say.

I don't recall you asking me anything, but those questions may have been embedded within posts that I have given up reading, as they have made no sense.

As to what "the refusal to understand is simply in context hoping no one else will understand as he does not agree" means - I have no idea.

I am saying what I mean. If you would like I can spend some time responding to you in private message if you PM me.

At first glance it would seem unusual for a support site for a neurological condition that varies with associated learning disabilities and problems with interaction, to require a certain communication protocol for the members, beyond that of the site rules.

We all have to follow the rules of the owner of the site, but how can we ever expect society to tolerate us if we can't tolerate each other. It's evidence that we can shun those among us we see as different as easily as anyone else can shun us.

Ci, is still here because he has thick skin; others come and go when their writing skills don't meet individual standards, and the member is openly ostracized. He has also openly stated that he has a learning disability, can't drive, and is involved in helping people with disabilities with all avenues to his individual avail.

However for those of us, that may have co-morbid issues, like OCD, and have trouble when things aren't in the proper order we think they should be in; that too is a serious issue. I'm not suggesting anyone has it, responding here, but some of us tend toward a perfective nature, that is not a possible standard to attain within the entire spectrum.

If someone did cause another individual psychological discomfort because they didn't meet their communication standards, or agreement in viewpoint, there is an easy way around it; there are ways to block member input in the Wrongplanet.net section that can help one if they don't won't to see the opinions of a select few or many. If I remember correctly Lau contributed to the sticky post for that information in that section of the website.

It's would never be an avenue for me, I've tolerated a great deal more in life, than a difference of opinion or a problem understanding someone in a discussion board. But from an objective standpoint it is a more humane action than trying to eliminate an autistic individual from any forum on a support site, as long as they are playing by the site rules.

In another post an individual complained about the way that Autism Speaks portrays those that have Autism. Often people state that autistic people can understand and speak for the less enabled autistics among us, better than Autism Speaks, any parent, or friend could ever do because we understand what autism is.

It seems obvious to me that some of the most intelligent among us have real difficulty understanding those that communicate differently than we do on the autism spectrum and have the expectation that Autistic people should be able to do grammar and spelling perfectly.

I've read the writings of people that were mainstream professionals that relied on verbal skills, rather than written skills. These people were extremely successful; I have no idea why they never never gained grammar and spelling skills, but they could present complex oral presentations that I could never do.

Ci's writing ability is much easier for me to understand than the focus required to interpret many of the writings of the professionals I came into contact with in life. Maybe it was because they always had secretaries to do it for them, before email came along.

As far as continued arguments on the pitfalls of ASAN they are certainly no less rational than some of the ones stated over and over again about Autism Speaks, if someone takes the time to look up the facts and sift through some of the internet myths and exaggerations.

At least one of the viewpoints of ASAN that we have the inherent ability to speak for Autistic people better than Autism Speaks, doesn't seem to meet that expectation, when some of us are actually challenged to do it.

Sorry to use you as a case study Ci, I wouldn't do it, if I thought you would find my words offensive in anyway. This is part of what Ci has been saying here, the needs of some on the Autism Spectrum are extremely different than the needs of others. Ci is HFA, would any of us even respond to someone that had severe communication problems?

Something to think about for anyone that doesn't think "Autism Speaks" was a highly relevant phrase to use in describing the core issue that some with Autism have, getting someone to listen and understand them. I remember what it was like not to be able to get a sentence out, and some to say back to me blah, blah, blah. I can't help to cringe a little bit when I see it happen to someone else.

Two representatives from the organization did show up on a thread in the general discussion area on the topic of the merits of Autism Speaks, and I found myself in disagreement with one and mostly in agreement with the other. Representatives from the ASAN organization would be welcomed here, and would probably get more people involved in this particular forum.

It would also be great if Autism Speaks representatives would come here to discuss issues that people have concerns over. But, considering that Autism Speaks is comprised of paid employees, and ASAN is strictly a volunteer organization; I doubt Autism Speaks will take time for the effort if the members of ASAN don't see it as a worthwhile regular effort. And, as I think about it, I can't rememember anyone suggesting an invitation for Autism Speaks representatives to come here for discussion.

I may be mistaken, but I'm fairly sure that KenG is associated with ASAN; he has never presented anything here but respectful views, and is a regular contributor, he doesn't often get involved in the ASAN vs. Autism Speaks debate; it's often counterproductive and hard to find any middle ground on that subject.

@KenG, if you really do have the influence to bring some ASAN people on board that have the patience to listen and talk to differing opinions, it's a great idea that has been suggested here. I'd like to hear what they think about the new mission of Autism Speaks to bring the community of autism together to let politicians and other influential people in society to understand the needs of people with Autism.

To make it clear... I try very hard to understand people with complex problems in communication. I (and they) think I do fairly well.

I take no notice of people who "have an agenda".

As I stated earlier, I do not entirely agree with ASAN. However, I do not "bad mouth" them.

Having discovered, quite recently, that my life-long problems had a fairly simple explanation, I feel perfectly empowered to advocate for those less expressive than myself.

I don't think I'm right.

I do think most of the rest of the world is wrong.

Much of what ASAN has done to derive attention was bad mouthing. While bad mouthing (disagreeing harshly) is not wrong wen done in certain ways and by certain people it can be detrimental to other important issues. I can assure you that what I've written has been with the intention of neutralization politics. Neutralization politics is like refreshing the air in an otherwise good setting. There is some stank I guess you could say that effects those who the need help but unless the stank is removed with odor neutralizer and air purification there is a risk to ones health and well being (issues conflict with one another).

Everyone is a special interest and has an agenda called an opinion. It is important that when real discrimination exist it is not taken lightly as when the notion of discrimination is accused to much when it is not a big matter then like the person that cried wolf to many times no one will come to help. Mixing issues like abortion politics, asking the public for money and going up against creative awareness to help those least fortunate if not done clearly and in highly sensitive ways to protect the interest of others has risks.

Unless a problem is as exact as 1+1=2 then everyone in this world can be both right and wrong on certain issues. The abstract understanding of things can with generalities create a functional dynamic to interact with intellectually so as to derive possabilics. However in public relations which encompasses a collective of minds you're dealing with possabilics and certainties. One aspects of the population will interpret X a certain way whereas another interpret it another. If not done in the most thoughtful ways possible risk is increased effecting others.

I'd be happy to extensively go through the issues with ASAN on this forum out in the open. Analytically understanding risks in projected behavior and potential PR results. I believe there is a reason media has not given them much attention after some key interviews.

Last edited by ci on 31 Jul 2011, 8:59 pm, edited 1 time in total.

Any suggestions then?

I have zero problems where I live also.

While you may not agree with Ci, you were the one that stepped in to advocate for the rights of general members to participate here, and not to be excluded based on a judgement of their contributions. I expanded on your point a bit, but haven't seen a lack of a willingness on your part to communicate with ci in the past, only a misunderstanding between the two of you that I witnessed some time ago, that you no longer wish to pursue. That's your business.

I don't see where Ci has any intention of hiding his agenda; after all he is focused here in the political section of autism, and politics by nature usually entails agenda.

I don't see it as any different though as the agenda against Autism Speaks that I see intermittently here along with similar research and cure, ideology. It appears that this is one of Ci's special interests.

The preservation of rights which includes choice and not the removal of rights. Hence claiming a cure is bigotry removes the support of choice. Why it is considered bigotry is a matter of social sciences and as a person with autism myself I feel that I might be able to derive a respectable understanding. It is somewhat complex but unlike physics which I do not understand to well it is in of itself my interest.

It is also a pete peeve of mine that compassion be made out to pity and that the real disabilities that exist must be hidden to preserve the agenda of others. If you watch the video I post called " They don't care about us" and research a name that is mentioned other then Martin Luther King. Jr. called Franklin Roosevelt you will find that during his time disability was something you hid from others.

In this day and age it is different yet still some have an agenda to keep understanding hidden for the sake of superiority notions. The pride movement has benefits and risks. Some collide with one another that are both in the best interest of some with autism and not others. It is unfortunate autism is a vast context of people.

We all have different values and some have to do with abortion politics and mine have to do with the best interest of those living who would like to find ways to live a more integrated life. there is idealism and then there is technique to make that happen. I have found the best possible technique to help those including myself have a more meaningful life when it's needed and individuals can use it to transition out of that method or stay within it as a facilitation based on individual capabilities and choices.

Ultimately the politics of the pride movement and related have presented very certain risks and potential risks to related human rights. Now it's about ethics and making crystal clear to the public the issues. Some issues need to be separated or there will be a very long dispute effecting other outcomes as what is seen online at times as it spreads offline.

Hi lau, I second that thought.

Two or more wrongs do make up the modern era. While some may be closer to the way I see things, and some farther away, on some level they all make valid points.

There has been great sport here picking apart the published works of science, that seemed to make sense when it was just them writing a paper. They have not come here to defend.

Autism Speaks has let Marketing overcome common sense, but they are a Marketing group. I happen to like the way they spend money. It is better work than that deconstructed here. Some of it is great, it may not apply to Autism, but it is good science. Marketing may be needed, but I find the whole advertising concept somewhat distasteful.

Advocates should be doing something, it does help to have a plan, do some good, before the plan of world domination by the elite. Just because other groups are older, better self funded, are driving research, does not make them evil. They have avoided the advocate role. Advocates have avoided understanding the science.

Between the curbies, anti-curbies, I see ci, I agree with the view we must be involved, engaged, exposed to people who can identify us as being part of the whole. I am older, I have been doing that for a long time, and I have fit in a few times. It is possible. There are not enough of us to make a minority, being extirminated by Autism Speaks Marketing, or withdrawing to the Advocate Camp, are not going to work.

The question is how are we going to intergrate with the world. If I read it right, that is the ci view. I have done it, sometimes it worked, we could learn to do better.

I too have an agenda, I think we do have some exceptional skills, which are being wasted. Others have this view, and have even hired the autistic for detail work, and gotten great results. A lot of IN** types here, and during W.W. II, they were used to assemble the Norton bomb sight. Detail and perfection are also where I met autistics. Repairing cameras and microscopes, machine shops, the best mechanics, and later computers. It can be a useful type.

The curbies are not interested in doings us any good, the anti curbies have no plan, intergration into the main stream is the only option.

New tools, I do much better with a keyboard than in person, and we could form groups around some small projects that would have closed doors and painted over windows and produce income with no one being the wiser.

Candle making seems taken, but there are thousands of others, and more could be set up than we could staff. We are like the Mississippi Choctaw on the Rez, a fragmented people, but once some economy got started, they prospered, then had to hire outside the tribe, and are now the tenth largest employer in the state. They have proven their value to the larger whole. Besides the people they hire, they have suppliers, customers, and they pay taxes. They are developing broad support for being a micro minority.

Politics and business are understood. Taxes and gross sales are good, no matter who does them. Charity case beggers are bad, no matter what.

No one is going to stop autism, nor could it be supported. The only way out is become productive citizens.

The only people who can study autism are us. We should, our lives depend on it. I learned late what the real problem was, I did try to deal with the problems of life with less knowledge, no support, and it could have been better.

Curbies and anticurbies are Republicans and Democrats in Congress, but We the People run the economy. Ignore Washington, we live on Main Street.