Reinventing Autism Self-Advocacy?

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Yes, it is strange to feel smart in some situations and feel below par in others. There was a post awhile back that I made in one of your topics about a girl that had autism that everyone thought was severely ret*d. When they found a way for her to communicate beyond speech, it showed how intelligent she was, and how unique her view of the world was.

I had problems with speech but also had problems with writing anything longer than a couple of sentences until computers came along. Even in the short period of time you have been on this website, I can see how quickly you are adapting and getting better at expressing yourself, and you have changed some of your opinions based on objective information.

There is nothing slow or dumb about you; there is no way I could put out as much information, as quickly as you do. I haven't seen anyone else do it here either. If you have measured it, how many words do you type per minute?

I was tested at 80 before. At the center I am making typing will be one of the trainings. I have an experienced general academic teacher as the director. I am ethics and public relations but PR will be handed over to a PR coordinator and then I will be an independent participant. I am just interim Pr and founder.

What is the regional center? Is this a place where people live and work, or just work?

They are like the government and vendor organizations do what the government has said they are unable to accomplish. I am a consumer of it and will be the first in California history to be a consumer that is a government contractor. It is in the final stages.

Last edited by ci on 25 Jan 2011, 5:58 pm, edited 1 time in total.

When you write it seems you are seeing (perceiving) me as others as if I approved. I've had an agenda since I've been here. It kind of reflects (is similar) this M.J song but for autism advocacy. Priorities are priorities and as a community we need to help those that are in really severe need then on up from there. Sometimes advocates are going way to far and cause problems for those with severe needs and who depend on PR they are insulted by because of ego.

Important video for readers to watch.

[youtube]http://www.youtube.com/watch?v=PivWY9wn5ps&ob=av3nm[/youtube]

I can see a little of the problem you are talking about regarding advocacy, but I don't think their existence is having a significant negative impact on anyone who needs financial help or treatment.

It was obvious from your postings when you got here that you were upset that some of the advocates banned you from their email list. I understand that you probably had the same agenda when you were conversing with them before you came here. I'm not judging your agenda; I can't walk in your shoes.

Judging from the posts here there are more Anti-Autism Speaks people than anti-advocate people so it is obvious that you are not looking for approval. I just happen to see merit in both groups, and your views on Autism Speaks may be a good thing for some people to be exposed to. You do have some valid points on the advocacy group as well; it will be interesting to see if anyone sees a negative impact as strongly as you do.

No. When I talked to those specific people I had no mal-intention was just trying to share my story of success and they were well quite the extreme of anger and big time bullies. But anyways banning people for having different opinions is not uncommon. I won't mention groups by name but it happens all the time to preserve a certain rigid point of view. That's why I like W.P and I've used all sorts of extreme examples, self positions in portrayal and attempted to trigger certain responses and have studied this for a reason. Two outcomes have been made as a result of my short little experience here. 1. W.P has passed the basic civil rights social inclusion test I've done offline with other groups. 2. When diversity in present autism groups in liquid freedom form of influence potentials change is possible for the common good.

I think you will find my personal views are not very rigid but my little test here has resulted in some attention internally and externally from this group sphere and I'm quite happy on a personal level.

The test is over.... I will only fund groups that past my civil rights test. So W.P may get some marketing dollars in the future.

Nathan Young

Your description of your efforts and goals here sound great. Sorry to hear you were bullied and banned, but like you said it happens all the time. I did see the advocate's reasons for banning you and according to them it wasn't just because of a difference of opinion, but I do see how there could be a conflict with opinions.

I have seen at least one similiar story from another person on the internet. While doing some research on advocacy groups, I noticed some of these experiences; putting you on facebook seemed a little extreme to me and reminds me of other bullying experiences I have seen on the news. I would hope that was a rogue individual and not an actual official of the organization. If it was an offical of the organization, that would definitely reduce my view of the advocacy organization, regardless of what they said you did or didn't do.

It is not absolute but I did conclude it was possible those were not members of ASAN one being on the ASAN site and were not actually them. I've got emails from them calling me names, putting me down, making fun of my family and so on. I figured might as well be PRO-Cure making them look bad. I was told to contact people on email after being attacked for sharing my story but they cursed at me and anger with more anger and would not rationalize anything with me. Some guy went on the websites and said I have police record of harrasing people by phone so I figured it was pro-cure talking about anti-cure harassment or a counter deflection of such claims of them. Who knows some people make up things like that but it's time to leave hate filled people behind in advocacy I believe because it slows progress.

I don't take anything at face value. Bottom line is people are angry with each other and I don't want nothing to do with it nor had anything to do with it at that time. The extremes alienate themselves and I'm a moderate now by choice instead of being pushed and pressured.

Anyways moving on from that yes many people have been banned from groups for simply not agreeing as self-advocates. It happened time and time again in groups. It had to do with pride and so on. I just state the scientific speculation of it. I've seen many self-advocacy videos, parent videos and so on. I think you will see a very good balance and various perspectives in balance with risk factors of all kinds in my writings to come.

I am a bit of a father protector of people and it is quite zealous and eccentric yes but I know my own limitations and experience to. I believe fundamentally in helping one another and manifesting change with good will. Some issues conflict and harm.

It sounds like that was a pretty bad experience. Seems like you have a good outlook on it, not squaring the blame on anyone in particular. I'm sure the writings to come will be interesting. They definitely have been so far.

Most of the writings here have been strategic concerning governing perspectives. Yet true analysis does not take sides in conclusion as that would be my bias. Other people will have the opportunity to input and then I will do revisions. The goal is to preserve as best as possible the right to dignity, the right to treatment and also the risks assessments for instance are few times criminal in potential on only some issues but mostly some things people ought to think about for reasons of the autism spectrum as a whole. Autism Speaks for instance has minor integrity issues inflamed by pride politics but pride politics have what seems like moderate integrity issues having to do with conflict of interests with self-image and simply the idea in social opinion most people with autism and especially those in more need are not part of that movement.

I will also look at public stereotypes in part but again autism for the very higher functioning in my opinion don't often as much as a black person experience the same sort of discrimination initially but beyond that it's to subjective for my input. Cognitively higher to lower functioning people in programs seeking transitional employment do experience at least innocent prejudice as a result of the friendly fire modality of preservation politics. The world is not perfect but my specific job is to help that realm of context offline with media partners.

I think acceptance and self esteem is a larger issue for highly functioning Autistic people than discrimination. I know the two are related, but there are additional factors at play.

I saw a study recently, that measured self esteem among the different races and black people scored the highest self rated scores.

Other than Food, Water, and Shelter, there isn't an external factor that I can see as more important than social acceptance. In the wild primates don't do well if they are shunned by those of their kind. The same kind of thing applies to humans.

From a psychological perspective, lack of social skills and the inability to maintain friendships can be potentially disabling in itself.

This is why the chit chat, outreach and so on that you see among advocate groups is vitally important to the mental health of the highly functioning Autistic people as well as those that may not be considered to be highly functioning that have financial and social needs. If the people of the organization were behind the bullying you reported, it is particularly distressing because of this basic human need.

Bigotry for instance is in spite of self-esteem. Note though I perceive those very high functioning different from high functioning. Very high functioning can get a job and sustain a job. This is the basic standard for SSI/SSDI safety net. In my context not judging anyone else I spend everyday seeking self-sufficiency but not just for myself in my job. It's complicated because I could have been a local craft maker as my hyper-focus making candles but my mentality was about people feeling left out and I do feel selfish about not helping others so at least I have a more grand puzzle to keep me busy.

With regard to ASAN a non-absolute thought is the preservation of unborn life by some of it's members or organizations associated will bully others in self-esteem at times to preserve the unborn life in politics. It might not always be name calling, put downs but just tactics that ignore truth. Truth is the absolute and societally in adaption I think diversity agenda's generically that entice inclusion can indirectly help with this but is not about this.

Intelligence just makes things more complicated causally. Animals have bliss, some people have bliss but intelligent people tend to be more burden then value. Just a joke!

I think that self esteem and acceptance are part of the "truth" or laws of nature that are very hard to separate from this issue. I think that the basic human element of self esteem, acceptance, and ultimately survival are very much part of the anti-cure, anti-prenatal test ideology.

The need and struggle for self acceptance or self esteem can be psychologically threatened by the idea of a cure or a prenatal test; it can be viewed as evidence of disability or even defectiveness, and can be ultimately perceived as a threat to survival. Even though a cure will not be forced on existing Autistic people the thought of it can be perceived as a threat to survival. This is why you see some people express a defensive nature sometimes to the point of violence when cure is mentioned.

The same can be said for mental illness; it can be difficult to admit or seek help because of the social stigma and acceptance related issues. Denial or acceptance of the need for help is often determined by what is perceived as more important for individual survival.

I recently read a post regarding autscape presentations and there was a cautionary paragraph about presentations related to a cure. The difference is that some experience their condition as disabling and struggle to get the assistance or treatment they need and some struggle with their condition as being okay and while it is psychological, there is a perceived threat for some when cure or prenatal test is mentioned because of the relationship to self acceptance, social acceptance, and ultimately survival.


Regarding your joke, I used to share the bliss of my cat when I sat on my patio at the table and only thought about how green the grass was. I really felt accomplished when I was in tune with this simple, yet powerful acceptance of existence. Intelligence can be a double edged sword.

Yes yes and even more. This issue would take a volume of books. However the simple judgement and derived of law is dignity does not supersede the right to treatment or even the right for treatments to be developed and is a fundamental conflict of interest ethically. There are more factors at play here but some very abstract and some having to do with the causal factors of the original movement for the higher functioning. Anyone of advanced PHD study in a specific sub-field would fully be able to understand it but I will not mention it here but maybe on the website. These writings do take a great amount of time.

The ethical judgement is final and anything further is an issue of human rights law. If you would like to speak of another matter in context to the original subject please do so. Otherwise I would really need to consult with professionals I do not have access to where I live but could reach the site for comment.

The issue of ASAN, the issue of the behavior of the relevant group and so on is no longer contextually considered in this conversation in my analysis of your words. Please another subject if you will.

Just to clarify my last post was not directed at any advocate group. The existence or non-existence of organized groups does not change human nature or the need for self acceptance, self esteem, social acceptance or any other universal laws that apply to human nature. The same ideologies regarding a cure or a prenatal test would exist around the world if no organized groups had been established.

As far as the laws that govern in the US, Freedom of Speech would still allow the ideologies, but the laws would also protect the development of research and treatment, just like they do today. The law protects both views in this ideology and allows both groups of people that share these views (not organizations) to fulfill their psychological and material needs.

An ethical judgement on this would only be an opinion because both ideologies are valid and co-exist and no one can legally be deprived of their opinions or needs because of either ideology.

Per the original post the reinvention of Self advocacy groups would only serve a purpose if new groups were made available that support research for a cure and additional treatments for Autism. The two ideologies regarding cures and prenatal tests will not co-exist in one advocate group because the psychological and material needs of individuals in the Autism Spectrum are different depending on the level of their functionality and personal beliefs.

In reality, would there be any other way to reinvent a self advocacy group? Regarding these ideologies could any advocate group be inclusive of both ideologies? Are the ideologies going to change or go away? I think the answer is no, no, and no.

Is there a need to reinvent self advocacy in forming new groups? I think the answer is yes.