Changing my mind about Autism Speaks

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Jesus Christ man do you live in a 3rd world country? Of course special interest is going to cover there arses whenever they can. ASAN is not immune from it's other political games and missteps simply because they do as many others do with and without autism by standing up for humane care and dignity which is written into the law where I live. Do you think I am ignorant? I am not ignorant in two ways. I don't fall for I am hated for autism ramble and I don't fall for the perfect world piss liver.

I ran a campaign against Fresno County Government for confining and isolating an individual with substantial developmental disabilities for clapping. I embarrassed the hell out of the area on a state-wide station and with congressional remarks publicly. However that same Judge center you speak of is not the center of the worlds persecution of individuals with autism as the normal example just as otherwise with my example.

Being balanced, respectfully strategic and allowing for diverse thoughts wins. I know so enough with ASAN because they either change the attitude or the shift continues away from them. It's an opportunity and I'm telling you and others publicly here. If they want my support they got to change some tactics otherwise I see them as a risk creating more adversity and hurt feelings then actually needed.

The way ASAN leads because of the dynamics of the issues is going to hit a brick wall and will effect others. They can't be to damn arrogant not to take some advise. They have been invited here by several people to talk to me. Thus far despite agreeing they got their tails between their legs because they want to use the abortion politics to win other issues and it is highly unethical.

I can reverse engineer strategies openly and to the disfavor of others who use persecution politics in overzealousness as well. Simply this sort of game won't win. People like me got to pick up the pieces as these folks do it and when it's over with I'll still be available on my toll free line for free consults. I don't want to control anyones organization I want to see people have happy lives.

If you want to see people have happy lives, stand up for them instead of becoming an apologist for well-funded, socially acceptable prejudice and oppression. Mindslave should have used more tact, but he was right. When we encounter something wrong, the thing to do is to fight it even if that is hard, politically incorrect, or inconvenient. The first thing anyone who intends to help the cause of autistic people should do is grow a spine. Where we find evil, we should drag it kicking and screaming out into the light and do whatever it takes to wipe it from the face of the earth. In the case of Autism Speaks, that means educating people. It is our responsibility to tell everyone who will listen that this is not a good organization. The more people know about them, the less money they will give. If the donations stop flowing in, Autism Speaks will starve and fade away. What that organization does is wrong. We do not compromise with wrong. We insist as loudly as we can that it has no place in our world.

Instead of thinking everything is oppressive and prejudice to get your and others way when it's not all the time work with it and be diplomatic. Holding up signs saying your not a puzzle when it was the label that is the puzzle and taking everything personally is just shallow and under developed politics. This is not like the KKK and African Americans. Autism is a disability label and not a person as a whole. I do have a big spine and no I won't stoop to the level of pressure based and peer pressure based I am insulted all the time politics.

If you want change that will make a difference in the long term and not just the shock jock look at me insulted politics then consult me. Otherwise I have ethical obligation to see to it that research is done in spite of republican based agenda's diverting precious dollars away from potential quality of life improvements due to scientific understanding. The bottom line is you folks are the very high functioning, parents have rights and other people with autism are constantly bullied to be of your view or else they are spineless, curebies and even the media is oppressive and there are many other tactics being used that just could so easily be overrun. Work with me or get out of the way. That's not spineless that's a political challenge and it looks as if the fundamentalist agenda in the background of this will not win the day.

Yes a abortion test may be developed but it as an issue is fruitless to the whole. Stop trying to poke at my ego. I have studied that sort of thing. This is not a play ground and there are no bullies. My reason for this post originally was to say NO I am not afraid of the pride-mites but somehow that makes me into a man wimp? Next you will have pretty ladies dancing on YouTube about being manly so go against the cure. This is sublime tactics and is just politically ill.

Find compromises as the polar extremes on both sides are alienating themselves.

Nathan Young

I didn't think you were ignorant, but I think that when you deny that people are hated for autism, it is valid to point out that some autistic people have experienced this hatred, and that it has been used to discredit them.

I am not arguing for a perfect world, but a world in which JRC doesn't exist (as one example) is certainly doable without perfection. As is one where Michelle Dawson doesn't lose her job just for being autistic. Where a woman who reports a teacher's abuse of an autistic child doesn't potentially have her education and career derailed on the basis that she's on the spectrum. Yes, these are only a few examples, but there are more, and they are not difficult to find. How about this: It is nearly impossible for diagnosed autistic people to get commercial insurance. How about the sheer number of parents who murder their autistic children and not only get the public's sympathy because life is so hard with an autistic child, but get lighter sentences than parents who murder their neurotypical, able-bodied children?

My point is that when people talk about the negative image that autism has, that this image is applied to autistic people. This doesn't mean every autistic person is living with the boot of oppression on their neck, necessarily, but it does mean that being autistic is a discreditable state, where it can be used against you - to fire you, to cost you your education, to freeze you out of highly funded activism on your behalf (Autism Speaks), to kill you, to put you in an institution. People aren't just complaining about this because their egos are hurt, but because of real difficulties autistic people have experienced. This isn't just about feeling "insulted."

And I live in the United States, two states north of you.

Political correctness at times applies to the right to dignity. It is a personal philosophy to take a disability label and say well that is who I am and it is not negative. That gets in the way to the right to dignity, treatment and the social responsibility of others in the mainstream to find treatments for aspects others choose to be "cured". I am not arguing that abusers, human rights violators and scum do not exists in the government and private sector. I am arguing for civility, a balanced perspective and prominent advocacy on both sides to treat the public as if they are not bigots or in another context dumb zombies that will believe everything horrible. Compromise does not mean getting your and others ways all the time because someone is offended. It is personal philosophy and belief which makes a made up label pointing out things people need help with into an entire being as if is a dignity and humane care issue that should be socially enforced or expected.

Tell me some things you and others believe and I will come up with compromises for them based on laws and common sense.

Remember the public (the N.T's) are your friends to be but cannot be emotionally abused, manipulated or felt to be dumb and thoughtless either.

This stretching of the truth about the image of a label meaning human rights violations as if to be institutionalized is just political as well as laws exists against that. You are harming your points of view. This radical verbiage that is not based on balanced premises but has certain known agenda's won't get you that far. Compromises come with rationality that removes these conflicts of interest for the purpose of handling other issues in context.

The sad thing is that Autism Speaks is one of many organizations that had good intentions from the start but everything they do now just lacks any real productivity. The reality is that it we're more likely to find a cure for almost every cancer in our lifetime than it will be to find a cure for autism. Not that I am against a cure but many of these organizations need to readjust their approach. Alot of the money they raise to find a cure is better spent on programs to help autistic people (current and future) with social therapy and the ability to live independently. To raise millions of dollars that get thrown away on research for a cure that may or may never come is too much of a gamble...especially for something like autism that really doesn't really affect your lifespan anyway.

First of all, you have misunderstood what I was objecting to with the "global health crisis" thing. Secondly, your statement seems to indicate that you have not really been following what was previously going on with Autism Speaks. What I was objecting to was the fact that Autism Speaks has previously used "global health crisis" to sum up their statements that the incidence of autism has actually increased when the numbers are most likely just due to an increase in autism diagnosis. They have said in some of their old videos. I agree that severe autism affects quality of life, however there is no excuse for Autism Speaks or anyone else to tell downright lies about the issue. That is just propaganda stuff to play on the emotions f the general public. With regards to your request of actually posting some videos, I would have to dig up the old ones as there haven't been any recent ones that seem to do this sort of thing. Autism Speaks appear to be reforming with regards to how they present their message, although some advocates still don't trust them due to the way they came across in the past.

With all due respect, if the majority of the scientific community agree about something, it mostly is correct. They mostly agreed that the vaccine theory of autism was nonsense long before Wakefield was revealed to be a fraud. Thus all research they did on mercury or thimerosal as possible causes of autism was always a complete and utter waste of time. The funny thing is, is that they're still doing research on them as possible environmental triggers for autism for those who carry the genes. That is still a complete and utter waste of time and money.



First of all, I have never said that people with more needs shouldn't be catered to. However, I think research would be better spent on therapies that could improve the outcome of autistic people when they reach adulthood. Research on pre-natal testing or gene therapy will make no difference on the quality of life of people already living with autism. This is because gene therapy can only be applied to a developing embryo, and it wouldn't be practical anyway because the genetics of autism has already turned out to be multi-factorial. Gene therapy is most effective when it only needs to be applied to a single. Pre-natal testing would just alert a parent to a possibility that their unborn child might have autism and I doubt it would be very accurate anyway due to the complexity in the genetics of autism. The best and most important thing that could improve the quality of life for autistic people behavioral and other therapies that could improve their outcome. Some such therapies already exist, such as the TEACCH method but they don't necessarily work equally well on all autistic children.

I think your compromise between the two viewpoints is acceptable.

My recommendation is to separate the abortion prevention politics from the cure politics in all but small parts. Anti-cure is an unreasonable argument considering political manifestions having to do with mainstream politics and cure as a concept is vague and can simply result in improved quality of life whereas the dignity argument is superseded by the right to treatment. Additionally deriving insults is now consider political in adversity agenda's seeking change when insults cannot be proven as intentional and especially if honest people just want to help as it hurts them helping for the sake of others power and control agenda's. The assumption of autism as an identity is alienable and is a choice.

In statistics this caters to special interest but also legitimate concerns neither can prove in absolute why autism is increasing. As for ASAN that organization is in hot water and is compromised politically and has no monopoly on self-advocacy and self-advocacy has no monopoly on the image of autism as parents have rights and autism cannot be assumed as something that can be separated or not from a person as interpretation is subjective.

The reason for my replies is there is so much political and psychosocial complexity that absolute findings are hard to determine. For reasons of ethics as I stated in the beginning certain advocacy must be held separate and when combined is unethical politically. Let me make this very clear. A simple topic while seemingly simple and of dignity is because of the extremely complicated frameworks socially is not as simple as it seems anymore for the protection of human rights on both sides.

Who is being investigated is not important but all should adhere to ethics within context to essential human rights (choices) otherwise they will loose their arguments and rightfully.

I know this is getting dangerously close to the ad hominem logical falacy, but I have to say that your inability to generate basic sentence structure throws everything you say into question. I have trouble taking you seriously. If you would hone your craft a bit, learn rhetoric and keeping your temper and how to use a comma, you could write some interesting things. We could have fun and enlightening debate. Some practice and a good manual of style would help you a lot. Try Chicago, St. Martin's, or MLA. You have plenty of passion. It would be great if you could express it intelligibly. Until then, I resolve to waste less of my time on your words. Ripping your posts to shreds is easy and therefore boring. I wish you well and hope your little rants grow up to be big, elegant arguments someday. Goodbye and good luck.

Note: The more you avoid rationalizing and debating whilst pointing out my inferiorities in language as a result of my disability it just proves my pride-mite arrogance tendency theory.

Does this metaphor and story help you?

ASAN will be politically modified within the next few months so I advise your attention to a little wisdom. Should they fail to change then they will politically fall and other self-advocates who are not allowed to be part of the group will then have opportunity to lead in more honest ways. It's a matter of diversity of opinion and not drinking the fruit juice per say of the political cults that force certain opinions on all of it's members or else be banned and even not allowed to speak through the groups.

Derived of fundamentalism personally and or manifest within a group intention. However what politics on these issues has done is used self-esteem to derive support as a political front. It was quite savvy and well protected politically with some advanced strategy but to many mistakes were made. Regrettably understanding autism to treat autism and even get rid of autism symptoms entails knowing exactly what autism is thus leading to a potential of a prenatal test and as well as potentially verifying those who claim to have autism and who are high functioning. This research for a cure is protected human rights and sometimes people contrive into the meaning of cure for reasons of mainstream politics.

It is belief that a prenatal test is not itself immoral but the abortion of diversity is judged as immoral. However as the law goes and how society is we cannot make this unlawful nor would it be keen to morally charge individuals politically. Instead a great balance is needed for reasons of ethics and the personal morality factor in these politics creates more harm. The truth instead progressed ever so eloquently and with laws and human dignities as they are ever so diligently manifest will save more unborn lives then any political and social confrontation, relating conflict of interests and or even mention. The perfect order of things is set in place if you will and to cross this path means what is akin to walking over a frozen over lake and neither you or I can walk on water so be careful.

Emotions many times are the missteps. Lying, manipulating and contriving in relating politics for the abortion issue is harmful. I suggest others begin to remap the autism politics and be honest with themselves.

Nathan Young

It never ceases to amaze me that some who are part of a community who claim to so value independent thinking jump down the throat of one person who expresses his or her own independent thoughts when those thoughts are not in alignment with their own.

There have been many times I've not agreed with ci's statements and opinions, but at the very least I respect his right to form and have his own.

He is NOT afraid, as one user here claims, and has shown some balls just in being honest and true to himself while knowing he would likely be attacked for doing so.

His post is NOT about fearing Autism Speaks. It's about having previously feared reprisals for speaking his mind from people here. He is now saying he NO LONGER fears reprisal from anyone here, and is now willing to speak his mind regardless of what anyone here thinks of it.

As a community of Autistics who CAN and DO speak for ourselves, many of the posters here who have vehemently chastised Autism Speaks for portraying Autistics as people who CANNOT speak for themselves, the OP's willingness to do so should be SUPPORTED, even if we don't happen to agree with him.

Those who are jumping down his throat for having his own opinion are behaving just as badly as they claim Autism Speaks does.

Enough already!

Nathan, I think the argument you present to weigh the positive vs. negative aspects of Autism Speaks is very constructive.

I am a little lost on your views on ASAN. I understand you have a personal conflict with the organization, and I'm not making any judgements here on who was right in your conflict with them, but their point of view on the conflict is available for public view on the internet. If it is true, they have a valid argument as well.

It seems like your quote below may be strongly colored by your personal conflict with ASAN. Per the quote below to suggest that you have any influence to remove an organization based on your view of the organization is no more realistic than the thought that "Autism Speaks" will be going away because some people don't agree with their tactics.

Maybe I am wrong but I think the main point that causes controversy is ASAN does not support research for a "Prenatal test" for Autism and "Autism Speaks" does. There are rational arguments on both sides of this argument that are interesting to hear.

I think it is great to express your opinions on the two organizations, but I think it may be hard for some to understand why your disdain for ASAN is at the level expressed in the quote below, unless they understand the specifics of your personal conflict with them.

I have no personal conflict with ASAN nor have I had but one direct contact with them concerning the calling others Nazi's issue. They said they would not do this. However ASAN has only allowed certain view points be expressed by their platform whilst dictating public policy as an organization of generic name of self-advocacy. Not all self-advocacy is the same and the rights of individuals by public policy to be forced to be against cure is unethical in the true sense of a civil rights facilitator. You can't be a self-advocacy civil rights platform without including all view points otherwise it's not a facilitator of civil rights just a specific perspective in political agenda. If civil rights is not respected whilst claiming to be a civil rights organization it is just a lie and misleading to the public whilst making unseen those of moderate perceptive due to conflict of interest and fear of those perspectives. The extremes seem to govern all issues as they are like shock jocks getting all the attention whilst alienating anything that might agree with one side and the other side other times. Just mainstream politics as usual but as a facilitator ASAN does not respect essential human rights in context just as Autism Speaks does not in implied meaning of phraseology.

The compromise to create balance is to use the same sort of tactics ASAN and Autism Speaks has but in order to allow in the public debate unalienable moderate views protected by the constitution as the polar opposite views are protected by as well. Hence does the social magic to come define moderate views? No, but it sure can create an urgency for diversity which comprises the entire autism community. The urgency of now given the issues and how they mutually compromise individual human rights is ever so evident.

Ari and his party is smart and so is Autism Speaks. The tactics are much like an abstract math. I can't help but see the formulas per say and adapt accordingly for the premise of diverse public discourse. Again I don't want to dictate opinion but further the civil rights agenda as Ari claims to want as well.

Last edited by ci on 22 Jan 2011, 6:09 pm, edited 2 times in total.

I have more NT friends than friends on the spectrum (although more than a few of both). I don't hate them.



I'm not trying to stretch the truth, but point to specific incidents that show that the hatred is real, even if not everyone experiences it to the same measure. Not all NTs hate autism or autistic people, obviously, but there are times when autistic people are harmed. Not just in institutions, but other areas as well.

Oh, and regarding MrXxx's post: I am sorry if I have come across like I'm jumping down your throat. I'm not trying to do that at all - I disagree with you, but I am glad you're doing the activism, you know?

I have a different strategy I believe will work well. Despondency to create change creates despondency in change if the intent is confined to a rigid view. No one can force views universally especially if what is being forced is so rigid unless you agree your the bigots or well said "one of them". This topic and this sphere of political concern are not the same but related. This is a big picture issue and the more conflict the less able legitimate human rights issues are enabled. I can get the support of parents but with how ASAN and related organizations have played the political game further despondency tactics will not be as fruitful.

I wasn't referring to anyone in particular, and definitely NOT you. Sorry if you thought so.

Most of you all are being just fine and civil. I meant only a choice few whom I will not name. Been there, done that. It ain't worth it.

BTW, I don't see how you can disagree with me. I haven't even stated my opinion on the subject. Not in this thread anyway.

And I'm not going to. Again. Been there done that. Ain't worth it.

To tell you the truth, my opinion right now is ambiguous on this topic. I don't even have one anymore.