Reinventing Autism Self-Advocacy?

Post Reply New Topic

Reinventing Autism Self-Advocacy?

The stigma of the online self-advocacy movement as a whole is burdensome at times especially with offline manifestions of the dogma. The low point was the anti-Nazi rhetoric with Nazi name calling, the indoctrination of mainstream political issues with autism abortion politics and the in general the reverse discrimination spell toward so called typical people which the N.T concept is not yet fully popular but is in part. The beautiful conceptology of neurodiversity was plagued early on with adversity but in premise may have as well conflicted with some essential human rights in PR to see autism as something to take seriously. Albeit as a dignity and diversity issue alone and not combined with other political issues neurodiversity could be much stronger and would be less resisted by special interest and for those in real need of help as opposed to those that simply function well and are not in need of help.

Neurodiversity in my public relations is just described as human diversity and individuals that are simply different or simply human in inclusion public relations. This has nothing to do with cure and anti-cure because I'd think it's easy to separate the two from research and treatment awareness. The idea is to entice the world around individuals to seek inclusion when individuals choose it and in my context agencies assist to include. The idea is to combine appropriate and as neutral as possible PR with agencies modeled for inclusion.

I was wondering what you think about what I am talking about? Also should online advocates consider reinventing self-advocacy when applicable to get rid of the stigma? If you think so what ideas do you have to make this happen?

Nathan Young

Much of the idea behind current self advocate groups is that neurodiversity means that some autistic people can function okay in society despite their differences. You are the first person that I have heard that says there is a stigma associated with online advocacy groups. I have heard people talk about Autism Speaks in related ways but never online advocacy groups.

I do understand that some people feel stigmatized by online advocacy groups; I think I saw that in your case and another here recently on the internet; these instances seem to be driven by different viewpoints and/or miscommunication. I can promise you that it is unlikely that any people that are part of online advocacy groups consider anything they do to be associated with stigma, it is more likely that they feel pride or accomplishment and this is evident in the postings here.

Have you felt stigmatized by any online advocacy groups? Some of your postings suggest this and if you do feel this way I am not judging you, but just as an objective observer it seems like you are projecting this toward some online self advocacy groups. I know that they are not perfect and I can understand how some people may not feel welcome, but I can't see where there is any stigma associated with these groups. People want to be part of them, in the same way you attempted to do so.

You want to focus on the people that need "real" help as opposed to those that function well in life. There is nothing wrong with this but many people that are part of online advocacy groups function without assistance and give moral support to others like this; and in many cases it is a psychological neccessity.

Just because someone functions well doesn't mean they aren't having serious problems doing it. Money is not always the issue. It seems that you feel excluded by some of these people that are functioning without any "real" help that are part of self advocacy groups so you want to start you own that does not focus on high functioning people.

If you want to do something different than they do, I say go for it. I don't think the word here is stigma I think it is exclusion. If want you want to do is inclusive of some people that may feel excluded by the current self advocacy groups, these people could benefit strongly from the new advocate group that you want to start.

To borrow from your phraseology an other than pride-mite advocate group. Is this what you are aiming for?

If you don't think current groups focus enough on the people that need "real" help, this is something you can positively impact with your new group. If you think that some are excluded from current self advocate groups, they may feel more comfortable with your group.

No, I do not think the current online advocacy groups need to reinvent themselves; their mission is firmly established and they are crusading for what they believe in. It will be interesting to see how your reinvention works out. I hope it provides alot of support to people that need it.

I've experienced the extremes yes but mostly unto others. My experience recently was by a group that felt oppressed and was likely envious of my success claiming I want others to pity me and so on. Polar extremes alienate themselves but I'd like to prevent them from alienating us all. Believe it or not the Nazi thing online is more popular then a mention just here and there. Combined with the N.T concept we got some public relations manurer to clean up and prevent from harming honest and good intentions.

Your post was long and I need time to focus on each part as while they seem simple they are involving many different aspects. I think it is wise some strategy is undertaken but not just by me. I'd just like to be part of the domino effect but not the leader guy or the leader folk. Observer folk for the most part.

Your post gave me something entertaining to work on throughout the rest of the night and I will reply in parts as I finish them.

Not all people who are into self-advocacy are the way that you described. I am somewhat into autistic advocacy, and I would never Godwin a discussion.

No that would not be absolute nor was intending to be.

Much of the idea behind current self advocate groups is that neurodiversity means that some autistic people can function okay in society despite their differences. You are the first person that I have heard that says there is a stigma associated with online advocacy groups. I have heard people talk about Autism Speaks in related ways but never online advocacy groups.

C.I -I think that's because I don't see myself on any sides in my psychological instinct in observation. I think that the idea advocates can do no wrong is biased for a few reasons. One being our advocacy at times is against them said as the “N.T's” and if the N.T's or people without autism pointed any of that out it would not be up for equal consideration. So here I am thinking about the thoughts of both sides as if it was a pond and each throw their rocks in the pond but at times perhaps the pond has huge rocks thrown and the rocks at times collect on the bottom making the pond water levels higher.”

I do understand that some people feel stigmatized by online advocacy groups; I think I saw that in your case and another here recently on the internet; these instances seem to be driven by different viewpoints and/or miscommunication. I can promise you that it is unlikely that any people that are part of online advocacy groups consider anything they do to be associated with stigma, it is more likely that they feel pride or accomplishment and this is evident in the postings here.

C.I “Perhaps there is a balance to be considered. If there are sides and accomplishments made what loss has also been made for other sides? If the image of autism is simply positive then the public won't fund programs. If the image of autism is simply negative we got more then people feeling bad about themselves but mistreated due to assumption?”

Have you felt stigmatized by any online advocacy groups? Some of your postings suggest this and if you do feel this way I am not judging you, but just as an objective observer it seems like you are projecting this toward some online self advocacy groups. I know that they are not perfect and I can understand how some people may not feel welcome, but I can't see where there is any stigma associated with these groups. People want to be part of them, in the same way you attempted to do so.

C.I “I'm about prevention and intervention in public relations. What I say is to create conversation to further this kind of idea but only on this forum and with selective members of my team I have called my dream team which comprises psychological related professionals and my determination on PR matters is final and not theirs. Putting attention to situations and circumstances existent and what is potential I believe is ethically important. Remember many in the autism community depend on the public for tax-payer support to live and receive help. Some points of view conflict with other interest and in such ways that we are unable to always agree and there is a reason for this and that's balance and preservation of human rights in the form of quality of life and this is mutually a bias and not in just two ways”. 

My online group will not be the typical group. There will be no leadership just enabling leadership(s) external from it. Public analysis will be made and ethical discussions enticed. Truth supersedes all else and even dignity, pride and special interest I'd think.

My posts really are too long for most people to bother with, and I understand this, thanks for taking the time to read my response. I experienced the very high functioning aspect of autism that I really wasn't designed for and at age 50 it has taken a toll. My cognitive functioning is not what it used to be.

From the perspective of someone that didn't get diagnosed for a long time and was fortunate enough to find a way to make it, most of my life, I understand the "me against the world mentality" that you see so often on this website and other online groups. Sometimes it expresses itself in despair, sometimes neutrality, and sometimes in pride. As you know life can be very difficult when you don't fit in, for whatever reason.

The world does not have enough avenues where people can feel accepted and find a way to make it in life.

There are so many people that fall through the cracks. Organizations like ASAN, Autism Speaks, Wrong Planet and all of the other support avenues patch some of the holes but so many more need to be patched. There are many people that still cannot find an avenue to feel accepted and get the support they need whether it is psychological, physical, spiritual, financial or whatever it is they need to keep going. I really do see a need for what you are doing, but I think the best thing a person can do is patch new holes, and not disturb the patches that work for different kinds of people.

It seems like you have the potential to make many patches for others, but there is only one way to move forward if you are going to be a patch maker, it is best to leave the other patches undisturbed, particularly if they work for others.

Here is my suggestion, bring your new ideas, focus on them, build on them, and implement them. Respectful opinions and disagreements always have their place, but there can never be enough patches.

I have broken many patches on the pathway in life; it took me a long time to realize how many I actually broke. At the end of the road you can be proud of the patches that you made.

Remember though this notion of self in analysis so patch making can happen or explaining why it may not happen is considered a bias. I even have to say things that are against my own self-interest and learn to not even consider it. For me a diagnoses would not be of some kind possible as I would be homeless as I once almost was, potentially in some hospital or institution after that fact but maybe and just maybe I would have learned to adapt in the mainstream. You and others to me I am envious of because your like them ( the N.T's) but really I am not envious I'm more happy because I am alive and well and that's my bias.

I do not patch, other need to patch because It is likely both sides will hate me but least I am taken care of. It's more then about me. I do not matter to me in this regard.

An old homeless person with the will to go on is better off than a young rich person that has given up, so within the larger scheme of things you really don't have much to be envious about as long as you are alive and well. You are absolutely right.

Anytime a person makes positive difference in someone elses life they are patching a hole or a potential hole. If it is truly more than about you, you are already doing this. It doesn't have to be a big hole.

No way Mr. Dude I already got my AARP card in the mail at nearly 30. Maybe people with DD and the old folks could make good conversationalist if the system further falls apart by combining centers as work and homes and focusing on volunteer-ism. I'm in the middle of the state where inclusion and integrations are falling apart and if I said this in the media more then a few would call that warehousing people but special interest benefit on both sides. Gosh survival-ism and hope colliding but reducing cost and increasing hope requires such instinctual innovation. I worry a great amount.

Ok I think you and anyone else gets my point with this subject. National security analytics may sound like paranoia at times but the health and human service security model is just as bad. How being fat is a national security risk to Obama just imagine what things I can imagine in if's for these other concerns.

Nathan

I just wanted to say a few things.

1. Online advocates can be extreme masters of manipulation but not even realize it. I mean some have up to tens of thousands thinking they are hated enough to be exterminated in the womb just for being who they are. It's amazing what some peoples emotions will come up with and people with similar emotions begin to think allot alike in what they say at least.

2. Organizations can overdo advocacy to benefit children. But on the other hand pride is a conflict of interest and most people honestly want to help kids. This is offensive to the image of autism indirectly because of pity? Yet people complain not enough adult advocacy is available and when it is and reflects somehow in relation to children advocacy it is offensive?

3. People are to focused on a label in my opinion when they could focus more on themselves without regard to focusing on differences so much. As a mechanism of adaptation I see it being used for social chit chat more then anything else whilst people that have autism in person don't even know about it where I live and well in most places I gather. I think the bickering with this concept of N.T gets in the way of progress and with this social framework people have set up focusing so much on there differences with the world around them and that of criterion socially I am not sure if ethically I could say hey Aspies and Auties help with this or that progress. I feel I'd be using something that I don't believe is healthy for others ultimately. The words N.T, aspie, autie and related clique language I am sorry to say is of my very few pet peeves.

I don't see why it's shocking and so very dangerous at times politically that someone like me thinks different then what people conform to here and in other chat places. It does get extreme at times. The idea of thinking outside of the box from outside of another box people are already thinking from that is the the so called original societal N.T box is offensive to some?

I know some people want me to shut up. That just makes me want to talk more. Thanks for the motivation.

Nathan Young

There are probably others that share some of your heartfelt opinions. You bring views that are not commonly discussed here, and many of them are relevant and interesting. Personally, I don't want you to shut up, I was just presenting the other side of the advocate story to you, because I didn't think you understood the value of these groups. While some may disagree with you and have difficulty understanding you; you do think way out of the box and this can lead to unique ideas and ways of solving problems.

Although you weren't accepted with the online advocates, there are people here that accept you and listen to the things you have to say. You've stated that you have a learning disability that affects your writing abilities; I hope people take this into account, take the time to understand you, and ask questions if they don't.

The fact that people are accepting your differences here, may motivate others that browse the forums with similiar differences and difficulties in writing to become an active participant. So, you could be patching holes and not even know it.

I've been told to shut up by a few on this forum so I know I am effective. I'd say the same sorts of things in the media. All I got to do is a few things but I wouldn't do it in my local media. We need a moderate view not polar extremes that dictate the public debate on autism. Of autism I'd be the instigator of funny like Jewish comedians. Yet I can really pick apart issues and help people understand. I am not good at in person conversation as I cannot put all the words together as easily. Ari is good at that but I think others need opportunity to then that group and that's my hope. I want to get other people in the media and other self-advocacy groups in the media but certainly ones that want to use different strategies then ASAN.

I had the speech delay and have had problems with verbal communication all my life that I have been able to hide by listening, and watching more than talking. People thought I was such a good listener, but I really couldn't put much into words. I got a little more comfortable with it in my forties. You may improve this ability also with time.

It sounds like you are interacting with people; this is the only way I know of to improve it. Besides, my wife and immediate family, I am quite isolated now, and don't get the opportunity to verbally communicate with people like I did when I was in the working world. I find that if you don't practice it and use it you lose it. I believe the same applies to learned social skills.

And a question for you, if you could choose between the gift of good talking skills versus good writing skills, which would you choose?

The reason I ask is that I have known many very successful people in the mainstream world with great verbal skills, that had writing skills that were worse than any that I have seen on this website.

Last edited by aghogday on 25 Jan 2011, 2:16 pm, edited 1 time in total.

I am extremely confident. It's just that I am used to talking to masters and PHD folks in their frameworks of understanding then they add to the conversation. My isolation tendencies stem from extreme hyper-focus and lack of desire for typical social existence which is why I am really good at certain issues. I don't really have the desire for my social skills as I think I have enough. I see on T.V when I used to watch it and online people don't need to be appropriate all the time. I can be very over formal when needed but I wouldn't ask a news person to pull my finger on the air well maybe if I asked before time and I had a auto whoppie with a sponge in the middle that kind. . Join my social media advocacy group online I am purchasing a bunch of software for it and some people are installing it. The W.P site will be my homie place dogs and cats.

I also help parent groups.

Dog = Men are dogs.
Cat's = Women are cats.

Cat's and dogs fight other times they get along.

And a question for you, if you could choose between the gift of good talking skills versus good writing skills, which would you choose?

The reason I ask is that I have known many very successful people in the mainstream world with great verbal skills, that had writing skills that were worse than any that I have seen on this website.

I've been offered to go on the T.V and do speaking where I live to very large groups. I usually tell media do an article and they do front page on autism education and other kinds of articles I say. The problem is it's to loud and my thoughts mix in certain settings and environments but I do not have it all figured out. Changing of topics throws me off when I'm still on one topic. When I write the style I'm good at it's very good writing and in the 5th grade I got an F as they did not believe I wrote it because they thought I was dumb and 2 grades behind I think and when I write speeches and am able to focus because it is predictable I am very good. I just know how to get media attention and am obsessed with human minds and how they work. That's my specialty and I like psychopathology, psychiatry and behaviorist folks.

I just do not know what I would change aside my ability to tolerate certain sensory environments, transitions and I want to speak to professionals more often about psychological philosophy and other things when I choose.