Changing my mind about Autism Speaks

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For many years many people have worked hard to improve the lives of people with developmental disabilities. If I was ever offered a brownie or award point for this subject I'd reject it saying give it to the tax-payers but certainly not the politicians. What I mean to say is no one in the public should work for recognition as this motivation is a conflict of interest least to me. Does ASAN have positives? Sure but cheating is cheating and being a copy cat is a copy cat for instance. If you achieve by guilting the public with abortion politics and want to think of it as well if folks don't like it that proves discrimination then other advocates such as myself will help in the transition but I am not looking for recognition and brownie points. The publics psyche is important to protect and again my obligation lays with the American Public and not any group including Autism Speaks, ASAN and even my own self-interest by going along with something like this. I understand your mentality least in part you want this to ride on by but as a self-advocate I'm watching and I don't fall for the games. Pressure is best kept on ASAN its for the best interest of everyone until their training wheels are off and they ethically change their approach.

My message is and will be quite clear. Cut out the damn crap and do an honest work. If you achieve then achieve with honestly, ethics and compassion. Do not manipulate our country. ASAN does not deserve all of the credit for change and others have worked hard for change as well.

Nathan Young

http://www.autismadvocacynetwork.com \ http://www.autismadvocacynetwork.org is my feel good compromise to this public relations crises. It will be developed within 30-days.

ASAN believes in funding support services for autistics. I don't see how that is a bad thing. They work with other disability organisations, so yes they do understand that autism is a disability.

I quoted aghogday who mentioned that a prenatal test and cure are unlikely any time soon, so don't you think it's a much more worthy goal to be focussing on actually helping autistics have a better life than wasting money on cure research that won't benefit anyone?

If you think of cure in the absolute as an entire shift to so called pathological typicality then that's wrong because that's to generic. Believe it or not program services like I recieve and have acquired a professional to establish my own for inclusion and self-advocacy that is to be funded by the government shortly is related to cure research. Behavioral techniques help individuals but more research is needed to understand sensory overload beyond simply psychological manifestations some think is the sensory overload. I mean I had to explain to a behaviorist the difference between anxiety related overload compared to true sensory overload and that sensory overload technically is not the result of psychological imbalance but the resulting manifestions can be melt down at times. We need to understand why sensory overload exists, how to help people cope with it and even improve it thus cure it in part and sometimes even entirely adapt from it so that peoples choices can be better realized. I simply do not buy into throw money at special interest programs and hope for the best. These programs need understanding by means of research.

There are ways of raising money for support programs and I will do this to the masses where I live but research is such a great thing to improve what services can do when individuals choose. I would enjoy heading the funding allocation for some research projects. I'd be the good ethical oversight and oversee the results with professionals and utilize test groups of individuals and outcomes as result of that research. Other politics also interfere with treatment (cure) research and it's getting old. Let's just move on from here and drop the zealous dignity conflict of interest.

February 15th is not long away. Don't underestimate my ability as one individual to entirely shift this political mess. ASAN needs to back off and respect the dignity of the right to cure for individuals that choose a cure. No more attacking our self-esteem for the sake of your pride please.

Nathan Young

The count down has begun!

[youtube]http://www.youtube.com/watch?v=Tt2ZXyMYzYM[/youtube]

Oh! Okay.

Either way, it's all cool.

Overall, I find the discussion civil enough. Just had an "AAUURGH!" moment back there, mostly brought on by those who don't seem to be paying attention anymore anyway. I suppose it's moot at this point.

I think you are presenting very good information here on why research is so important. ASAN presents an opinion against a cure and a prenatal test and opinion for neurodiversity.

Do you really think ASAN is a serious threat to research? There's no way, because they will never control the funding for research. Other Organizations control it and let's face it, it is the people that want a cure and additional research for treatments that are funding the other organizations. They are the ones with the deep pockets; they are the parents and potential parents of autistic children and there is nothing that anyone is going to do or say to change their minds about donating money for a cure and research for treatments.

ASAN controls their own funding and they have decided to use it to support neurodiversity. There mission is as valuable as the mission of Autism Speaks. I think that neurodiversity is a good thing and I also think research is a good thing. I am not worried about a prenatal test or a cure because I have enough information to know it is not a realistic concern. I also know enough about human nature and the motivations that cause people to contribute to worthy causes, to know that an organization as small as ASAN is not going to significantly impact funding for treatment research that the majority of people are for. Particularly when there is the element of Parents and Children. There is nothing anyone is going to do to change a parents mind when it comes to their desire to have the best possible life for their own child.

ASAN should continue to fight to raise money in support of Neurodiversity and Autistic people. Autism Speaks will continue to listen to the people that fund them and continue to fund research. The only significant impact ASAN will have is to gain more funding to help Autistic people and that is a good thing.

The statements below sound like you are declaring war on ASAN because you are concerned their opinions are going to have a negative impact on treatment and research.

Your efforts to provide better understanding about treatments and provide opportunities for the disabled are noble efforts. If you are concerned that ASAN is going to somehow significantly negatively impact research and treatments, I think declaring war on them will be as useful as declaring war on one tick on a dog.

I also think it is the worse thing you can do if you want to maintain positive public relations with the Autistic community and maintain the focus on the positive impacts you are having within your own organization. I understand that you feel that some advocates have attacked your personal sense of self esteem, but you really are not going to have a significant impact on ASAN, anymore than ASAN is going to have a significant impact on changing the course of research or treatment because they don't want a cure or prenatal test.

Taking out ASAN after the arguments are put forth I believe will free the minds of many self-advocates who have been emotionally used and down right mentally abused into making monsters out of those who are not for the ego pity of very high functioning manipulators. The self-advocates that oppose PRO-CURE typically use tactics such as put down, illogical false statements and in general emotional bully tactics. You will see arise from my creativity but mostly other peoples creativity that join on in for a new kind of diversity movement to protect against the missteps of ASAN and other fool hardy folks but my organization is democratic and protected by the law and does not misuse the publics trust by guilting them into thinking they are conducting genocide and in order to advance there agenda. To go against what is to be a tax-payer funded civil rights inclusion agency that is entirely unrelated to this issue for individuals with DD that vote on issues when other groups don't allow other opinions would just be proving more points.

Say hello to the new Autism Advocacy Network which has come about after 8 years of the crap.

I have no fear of reprisal and there is only friendships to come of these folks that make the next steps in this journey of activism.

We need unity not adversity hell bent on controlling people by using their emotions for their gains like ASAN does and other related organizations.

I am fully able to work with the media and train other to, won't charge a membership fee and get people the public relations support they need for their local causes and without the public manipulation.

I don't need or want anyones money.

There is absolutely nothing wrong with creating a new Autism Advocacy Network that is pro-cure/pro treatment or doesn't care about the opinion one way or the other. I think there are plenty of people on the Autism Spectrum that voice an opinion here that they would love to be cured and possibly be part of that effort. And I know there are plenty of others that share your opinion on this. But, on the other hand ASAN reflects the anti-cure opinions that others have.

If you develop a network like this it will thrive if it receives enough support from those that share its opinions. The important thing will be whatever benefit the organization provides for the people it aims to help.

There is room enough in the world for however many advocate networks that may be created to help people, regardless if they have a controversial point of view. I think the statement "taking out ASAN" is counter productive and sounds somewhat like an empty threat; if this is your ultimate goal saying it is about as close as you are going to get to seeing it happen.

Opinions on charitable organizations don't eliminate any organization, they just make interesting topics of conversation, and perhaps precipitate the formation of new organizations. Anything you are able to accomplish that will help additional people will be a good thing; the same applies to ASAN.

But don't you see ASAN because of it's tactics has impaired it's ability and is less effective. I won't have to do but a few things by contacting certain agencies, politicians and just a few media outlets and it's hardly declaring war when ASAN is at war already. I'm just forming a refugee camp and a new eden per say. Something else must be created and to actively speak for certain ethical approaches and entice really effective strategies. If folks want to get into the abortion issues and not like a cure for themselves join ASAN. Otherwise to dictate to others on issues by mixing issues together, reduce improvements by means of malice toward research effecting others human rights and guilting the public is a true risk to progress under the Universal Human Rights laws not to mention political conflicts of interest in the mainstream from both sides.

ASAN did it to themselves and I'm not calling them dumb. They just took a risk to get attention and made several missteps. Again February 15th is the date I will proceed otherwise ASAN might consider reform until this deadline. This will be quick, painless and very easy folks.

I follow through and prove myself on these PR matters and to prove myself to others so I can help them with progress.

I'm no expert on ASAN but I believe from what I have seen and read that they would support research that helps autistics to limit the impact of sensory overload and other such problems that are caused by autism. That's not curing autism though, that's helping people to live better lives by assisting them with the problems that autism causes in their lives. I believe in a recent speech I heard Ari make he actually mentioned that research into improving people on the autistic spectrum's lives is a much better goal than cure research. That would suggest that he would support research into helping people deal better with the problems that autism causes.

I'm not sure why you seem to think ASAN doesn't help autistic people at all and it would be better for the organisation not to exist, but I do know that a lot of people out there disagree with you. ASAN represents people who don't feel that they are represented by Autism Speaks. It serves a purpose. I feel that your time would be far better spent doing something real that would benefit people on the spectrum, instead of spending it attacking an organisation that is actually out there doing something.

Opposition to cure is pride based and stems from well the need for a pitty for ego. This is just in the reverse sense of what they oppose is pitty toward people with autism which has plagued progress. You see people with autism need the compassion of the public even though sometimes that makes even me feel kind of wierd. We deserve to be cared about by others and shaming that indirectly is really poor judgement.

What ASAN is, is a master of word games. They use bait and switch tactics to get attention. Cure is a vague term that has been made political for reason of abortion. Some false hope cure entails removing autism entirely when others don't choose that and that is ok. Yet the cure concept helps people think they are really helping and in the broad sense of developing treatment(s). I've learned to respect that others want to help and to have a little humility but humility differs from making fun of me and also my ego needs do not supersede the treatment needs of others with severe autism that need other kinds of special research marketed as cures as autism is plural for many differing symptomatology.

Autism is not one thing but many items of concern. Accepting that people choose to be helped by means of cure marketing is honoring the human rights of choice and allowing for that dignity by not calling it pity, self-discrimination and or bigotry. I accept that I am that I am and that I am can benefit from cure marketing but others don't think it's ok for conflict of interest political reasons.

Many people with disabilities including those with more obvious disabilities are talented. Autism prevents in more severe manifestions choices and a desired normalcy. However in spite of difference we might align aspects of difference to achievement because when you can focus so long on something or well be forced to ponder so internally because of communication deficit you get unique talents. However without deficits other kinds and even the same kinds of talents manifest in humans.

For me for example my computer has logged me watching this video over 500 times external from YouTube and that was within a program that counts. Many times over and over for hours. I get stuck in repetition doing certain activities which is a good thing for figuring something out but a bad thing sometimes for taking care of myself.

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

Last edited by ci on 23 Jan 2011, 6:09 pm, edited 1 time in total.

I understand that you support a cure, but there is already a really strong organisation out there that supports a cure - Autism Speaks. That view is already covered. Autism Speaks is a much stronger organisation than ASAN and has a lot of money behind it. Therefore ASAN doesn't need to support a cure - that view is already well and truly covered.

ASAN are doing good things for the autistic community though and they are a necessary organisation. Making support services available which will directly benefit autistic people's lives is a worthy goal in my opinion. ASAN represents a different group of people - people who would have no voice without them. I suspect a lot of austistic people would much rather have actual help available than to simply be pitied. I think ASAN supports real action to make autistics lives better and this is a goal worth supporting.

Many advocacy groups including self-advocacy groups have existed and have succeeded to create services and support. It's unfortunate that in order to create progress ASAN had to be awful and oppose what is right and what is right is popular. Here where I live there are services, funded self-advocacy groups that are democratic voting that vote in there board and president and in other areas this is true. This oppression that is being assumed by very high functioning individuals is misguided when all people had to do is ask Autism Speaks, ASA and many other organization to help those that do not yet have services receive services. Again ASAN has an abortion agenda and has chosen to plague the advocacy that works in order to achieve an agenda. It's an abortion group using abortion to pressure the mainstream political world.

One thing that will be availible on the Autism Advocacy Network website will be anaylsis of varient issues given different perspectives and macro cuasal outcome potential. It will seek conflict of interest, bias based agendas conflicting with human rights potentials and establish a profiling of tactics used by various groups in the past. The hope is to enlighten people as to what has been happening and alter advocacy for better future outcomes. As it is the media does not buy into any sort of reality ASAN is a central self-advocacy network but that of only a specific agenda and an agenda which indirectly conflicts with other issues of concern in spite of this idea of preventing abortions. I think that is a good cause but there are better ways to adapt to the political scene which manifest certain perspectives to achieve differing goals. ASAN tried one strategy that was desperate but we got to treat people as if they can think for themselves, have some organization transparency and public discourse on the issues which does not become polarized as a defense mechanism.

ASAN has socio-political put at risk human rights causes but as well as promoted other human rights causes as a stratgic cover guard of the abortion rights issue or not. It seems to be a give and take with them but the strategies are based upon really old school copy cat modalities and I am sure they would say they have no idea what I'm talking about. ASAN is welcome to contact me on my toll free number but actions to protect those living with autism are the ethical priority in their quality of lives and some things could be changed in order to assist with this. Otherwise human rights law and it's ethics protects that of the living and does not recognize innately early developing life in the womb. It's a matter of the law and should ASAN seek to modify this without what is already covered under universal human rights declarations they need to go to the U.N about the rights of unborn life forms to avoid a legal and ethical conflict of interest in methodology and modality.

Nathan Young
Media Consultant & Autism Self-Advocate
1-888-241-6856 ext. 701
1-888-241-6856 ext. 1 (About Info)

Those that depend on the absolute truth believe in few things but the process of finding truth.

[youtube]http://www.youtube.com/watch?v=-oCCnxBos10&ob=av3el[/youtube]

ASAN supports the idea that people with Autism can live productive lives. I know you do as well. The views they express are in alignment with the views of the people that they represent. The same thing can be said for Autism Speaks.

My understanding is that you want ASAN to back away from their opposition to a cure and a prenatal test. If they did this it would be against the views of the people that support the organization; this would be organizational suicide. The same rationale applies for any chance that Autism Speaks would back away from their support of research for a cure or a prenatal test. ASAN isn't using underhanded tactics to gain support and funding for opposition to a prenatal test and a cure, they are just reflecting the views of their supporters.

The majority of the public would like to see a cure, but the division is closer on the possibility of a prenatal test. So, at least for the idea of a prenatal test, there are many people in the general public that support ASAN views on a prenatal test. And your idea that they are an abortion group using abortion to pressure the mainstream political world doesn't make any sense to me because they have no impact on the laws that protect abortion and very little if any influence on potential decisions regarding abortion or the viability of a cure or prenatal test.

ASAN is not making any decisions for the people that have already decided they are against a prenatal test or for a prenatal test; they have no influence on whether or not someone has an abortion. I believe what you are implying is that ASAN is trying to scare pro-life people into supporting them over the issue with abortion and prenatal tests, and that this is an underhanded tactic. I don't think you are doing it on purpose, but when you bring up the abortion issue in relationship to ASAN it sounds a little underhanded on your part.

ASAN is just talking to the views of the people that support them. The decision for the support or non-support of a prenatal test or Cure/Anti-cure has little if anything to do directly with ASAN. This is a personal decision that in most cases has already been made before ASAN comes into the picture. The idea that some kind of malice, guilting the public, or human rights issues are involved, while I understand you are passionate about this issue, indicates that ASAN is exercising negative tactics to influence people, but the people's decisions for the most part have already been made on cure/prenatal test views so there really isn't much of anything to influence that will realistically change.

Autism Speaks and ASAN, have little influence over people's views on cures and prenatal tests. If the two organizations didn't exist or never existed people would largely have the same views and would support whatever cause was reflective of their views. So, if you want to declare opposition against someone, regarding cure or prenatal tests ultimately it is against the people that hold the opposing views.

If you start an advocate organization in support of people on the spectrum that is pro-cure you won't be exercising much, if any influence on viewpoints; you will for the most part be supporting people that have established views on the pro-cure ideology.

Other issues like marketing techniques can be influenced by public opinion and focus can be provided by opposing organizations. I really don't think that any organization is going to have much influence in changing core belief issues like abortion, a prenatal test, or a cure for Autism.

I think your viewpoints are valuable and I can't see anything wrong with your desire to start a new advocacy network. I don't see a need, a possibility, or effective way to achieve what seems like your goal to change the views of ASAN. If you disagree with them you have a right to that, but I wouldn't waste any time or resources in mounting an organized effort against them.

I don't need to have any sort of great efforts with regards to ASAN as I said it's a simple domino effect and your bean spilling above is great work and thanks for it. This topic is getting boring and I do need or have the desire to go into the next challenge. I will start a new topic now. Thanks for your time. I support the cure modality when individuals choose it as a human right and I support the choice not to receive treatment (cures) as that is a human right. I am not sure what else there is to talk about as the law is the law.