Changing my mind about Autism Speaks

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This is going to be fun. I am going to talk to my congressman about sending a letter to Obama on my behalf about the socio-political polarity issue and human rights relevancy. Ari was allowed a government appointment but he must by law follow the law and his interpretation of cure is biased and strictly interpreted for other political reasons. My concerns are valid and I will wait a bit to talk to macro media outlets because I am not prepared for my autism and DD product making effort to grow anymore as it is already to busy.

There is little I can do about Autism Speaks but Democrats appointing an anti-cure advocate to a government board is not fair to those that want cures. It's just a matter of political and human rights ethics. I think this will work out fine.

Whoops: That sentence was reference to your post about people jumping down Nathan's throat, but I meant it to be directed at Nathan specifically. I disagree with him about certain things, but I am glad he is doing the activism.

The reason you did that could be interpreted as peer pressure as anyone of rigid views agreeing with me will become unpopular in certain political autism groups and be banned or expelled. It's interesting how everyone wants civil rights yet seldom are civil rights respected equally within biased agenda based groups advocating about autism rights including civil rights. That's why I like being a lone blue dog. My perspective is seldom rigid other then the rigidity to allow all views and to allow for individual rights to be empowered. This by both polar extremes is very feared but many people I'd think are stuck in the middle and there is peer pressure from mainstream macro politics down to the identity politics in the micro.

Again I've learned to not take anything at face value in these politics. My ethical obligation under the law as a government funded agency to be is to enable all views in self and group advocacy. This is my job and this is also the job of the government and the ethical responsibility of macro parties collectively or else they will alienate themselves which they know under agreed human rights.

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

The reason I disagree with you is that I've already been following autistic self-advocacy politics for three years now and had already come to my own conclusions before participating here. The primary shift is in my thinking from "I might be autistic" to "I am autistic but I don't really want to admit it" to "I am autistic" to "I am autistic and seeking an official diagnosis" over that time.

I am not sure how that has to do with human rights. Your individual beliefs, reality and philosophy I do not ethically wish to change as that is your right. However any attempt to remove the rights to treatments and the advancements to treatments with public relations tactics is my interest. The abortion issues must be made clear to the public and the public encouraged to support the advancements of treatment research as a human right despite the peer pressure based politics. A mountain of evidence is available concerning the psychosocial manipulation and tactics and well I am on top of the mountain looking at the political games.

I believe it is my duty even if it sounds righteous and righteousness be redefined to be malice that human rights are not messed with as an individual right. The autism politics are so polarized and well filled full of propaganda as well as unknowns and others wishing to keep the unknowns from becoming known to science that ethical boundaries are needed for the preservation of individual human rights. Again this has nothing to do with abortion but abortion itself is an issue of it's own regard.

People are confused and I believe it's hard not to be confused.

No wonder so many disagreements happen in the first place.

I don't want to remove treatments, but I do want them all to be humane and respectful. I am opposed to the search of a cure in the sense that I do not actually believe that a cure is possible.

What my opinions on these things have to do with human rights is that my opinions are about human rights.

Regrettably the idea of cure is not a violation of universal human rights but if forced would be a violation of your individual human rights. Cure as a dignity issue is superseded by the right to treatment and of which is a psychosocial mechanism of achieving the research funding to develop treatments. Other interpretations of cure seem centered around abortion prevention and to redefine autism as a human difference solely and strictly when others with autism and parents see it as a condition that needs treatment if chosen.

The pursuit of a cure is a human rights issue that has been made into a personable dignity issue for the reasons of mainstream politics as evidence shows.

I mean separate from human rights, I don't believe a cure is practical or possible. Neurologically speaking, we just haven't found ways to alter brains like that, and even as neurology continually defines and redefines the processes that happen in the brain, they haven't really fully explained them. Consciousness is still not adequately explained.

Further, autism isn't just one thing but many related things, and what may work for one expression in one person may not work in another.

Can you present an objective list of the positive and negative aspects of Autism Speaks Vs. ASAN in relationship to the impact each organization has on people across the Autism Spectrum? It is rather confusing and controversial, but maybe this would provide clarity to some, particularly those that are new to these issues. It seems like it would be a neccessity to make a fair assessment of the two organizations. If not, if anyone else has researched the two organizations and has an objective list like this, I would be interested in seeing it.

Nathan, the reason I am asking you is because you have spent so much time researching these two organizations that you might have ready access to a list like this.

This is one strict and common interpretation of cure within political groups and that is atypically used for political reasons. Generically cure means to improve a human being life. Autism Speaks saying they want to rid the planet of autism does not necessarily mean the people with autism and can be politically interpreted as that but autism as a label that debilitates a person. You see all brains are different and still manifest self. Autism is simply a label and a cure can just as equally take the brain as it is and work with it in it's internal mind and external self manifestations in state of being to create a preferred normalcy by choice but may never be able to create typicality when chosen. Hence the mainstream view of autism is a disability and not just simply a human difference. Self-esteem politics (dignity) again does not supersede the right to the development of treatments said as cures.

I've asked people to present issues and awareness material such as YouTube videos. People at times seem not interested in anything but a rigid view point to protect certain biases. If you want a list created who will perceive it and in what ways? What is PRO and CON to another is entirely different from one another. There are basic fundamental issues that I'd enjoy spending time to analysis but few are interested despite my many times offering to. That's why I got to resort to the shock jock approach to get folks to that point of expressing themselves on these issues to find ways to improve the public relations mess given the core mechanisms psychosocially of adversity.

The intent is for people to get along and quickly resolve public relations issues for the quality of life of individuals. This does not always mean macro dignity issues will be obliged but fundamental human rights issues must. As I said before in so many words every aspect of mainstream politics seems relevant and so many polarities have been created in so many ways in autism awareness politics that the social and political fog is very thick.

We need to cater to open discourse of ethics and resolve for the improved outcome of individuals and their rights. The groups that refuse should be suspect. I think W.P is the perfect online forum place for this and not the media. It can be properly organized if the proper people feel that finalizing these issues is in the best interest of individuals.

If this is what you mean by cure, and you are criticizing ASAN and other self-advocates for being opposed to researching a cure, you are not using the same definitions they are, and it would help to make that clear. I do not believe that ASAN are opposed to human treatments. For example, some forms of ABA were inhumane - it was inhumane, abusive, and traumatizing torture to deliver electric shocks to autistic children to discourage stimming. The so-called treatments that Judge Rotenberg Center uses qualify as torture as well.

ASAN has discouraged the use of the word cure and also got into the selective abortion debate said as eugenics which is atypically viewed as what cure would entail for political reasons. Therefore the groups interpretation of cure is biased and political. Cure does not mean to destroy life as I think honest people would agree. The cure idea is a wholesome approach stigmatized by anti-selective-abortion groups. Remember to be a civil rights organization and platform they have to include all opinions otherwise dispite other good intentions they do not deserve a center-piece in macro media awarenesses even in implied name as being the official autism self-advocacy network. Using the selective-abortion issue while attempting to monopolize the public debate in organizational framework and premise is unethical toward other self-advocates. Prove me wrong by requiring the organization to ethically include all opinions and cater to the diversity which comprises the actual self-advocacy community.

This is an ethical issue and civil rights issue.

ASAN must oblige fair, balanced and diverse opinion otherwise it does not deserve it's political stature.

Should ASAN fail to reform what would be akin to a simple poke of a finger will create a social and political domino effect and the organization will be much less powerful and rightfully.

I'll give it until February 15th.

I wouldn't be surprised if some people are not aware of the scope of each organization beyond the cure and marketing issues. A pros and cons list would make for an interesting debate, but a comprehensive list of what each organization does in support of the Autism Spectrum would be helpful.

The discussion is usually limited to Autism Speaks and whether a prenatal test or a cure is a good or bad thing and ASAN and the image and acceptance of people that are on the Autism Spectrum. I think most people are set on their views of a prenatal test and a cure depending on their life experiences.

A prenatal test and cure don't seem like realistic goals, so debate on these issues, is pretty much just debate on hypotheticals. Chances are the research will be continuing 50 years from now, as it has been for so many other medical issues.

Image and acceptance is important to everyone to some degree and ASAN is objectively helping many on the Autism Spectrum to feel better about themselves; I don't think one can minimize this impact.

You changed your mind on the Autism Speaks organization in weighing the positive vs. negative aspects of the organization.

Each person could go to each website and study what the organizations do, but I don't think that is a likely outcome.

I don't think it is likely that anyone is going to change their mind on the merit of each organization based on the issues that have been presented so far. You may be aware of more specific facts and details that clarify exactly what it is that Autism Speaks does that makes them a worthwhile organization, and what specifically is ASAN doing to limit the human rights of people with Autism. Otherwise the effort may end up as rhetoric rather than impact.

Cures are developed all the time as treatments and do not prevent self-acceptance but some rhetoric generators need to accept and respect that cure is chosen by individuals with autism. ASAN limits human rights yes by limiting the impact of research by means of political falsehoods using the self-esteem of people with autism to justify its behavior but I will give in by saying Autism Speaks could really blossom by enabling the expressions of individuals with autism as a sub-component of the organization but certainly not give in to having high functioning self-advocates control the organization. As it is opposing a cure for autism especially when severe manifestions are present is a horrid human rights violation in the making but reasonably accepting individuals for the human beings they are is simply a common dignity. ASAN as a central political group of self-advocacy is not ethical and I don't think the media falls for the marketing tactics they use. I've seen how the media behaves toward ASAN at times and tries to keep a balanced perspective. The issues are not so straight forward and I can really understand the tactics Ari is using to stimulate further rigidity as if he and others are just misunderstood and akin to other great minority groups in the past.

Folks this issue is not like being black and racial discrimination. The reality of autism is well a disability so sublime political pressure and tactics need to be viewed in multiple ways to preserve human rights. Autism as a disability is an important thing to take seriously and yes families do experience a great deal of anxiety and hardship as a result of the disability. That does not make them bigots, intolerant or many of t he other horrid things that have been made up to capture peoples attention to what I believe as highly unethical self-advocacy practices by certain groups. I am a self-advocate myself and I don't feel ashamed to say these things.

While I understand you do not agree with the political views of ASAN and consider these views to have a negative impact, do you think that some of the other efforts of the ASAN organization have a significant, positive impact on at least some of the people on the Autism Spectrum. And if so, what do you think the positive impact of the efforts of ASAN are?

I think the ASAN organization is working very hard to improve the image and self esteem of people on the Autism Spectrum. You can measure some of the positive effects by the responses and allegiance that many on this website have for the organization. I also, don't agree with some of the things they are saying in respect to treatment issues for those lower on the spectrum, but those opinions are not likely to slow or change any treatments beneficial to those that receive or will receive them. The availability of proven beneficial medical treatments are not altered by opinions on what is normal or not normal. The ASAN organization seems to be having a corrective impact on some of the perceived, negative, marketing techniques "Autism Speaks" has had in the past.

I think, as a whole, the benefits of both organizations outweigh any real consequences of the views of each organization. Continued examination and improvement of each organization is a good thing, and in someways both organizations keep each other in check to assist in these improvements. I think the worse thing that could happen, would be if both organizations disappeared and the benefits both provide disappeared. Can you agree on this point?