The Dino-Aspie Ex-Café (for Those 40+... or feeling creaky)

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I haven't been following that thread in any great detail. When Alex is brought into it or WP, I see a problem or potential. WP is his, we make up WP we co-exist for lack of a better word. One without the other wouldn't be the same. Alex doesn't speak for me, nor could I go to any other place and speak for anyone other than myself. To be really fair, I've yet to see him do it. I can't or won't speak for anyone here even if we were in agreement, it would be deceitful, someone would not concur with my views. This place, WP, is not an advocacy group in the sense of what one normally might be. I don't feel it is set up for it. Now, what might branch from it is another matter. I could be misconstrued as coming down on Alex, far from it. In spite of the common thought of WP being an advocacy group, held by some, I don't think so. I look at it as more of a window for any that might care to take a look, understand. And most certainly what I feel this place really is, a place for us and those that discover themselves.

Some good points you bring up in what you wrote krex. Not hard to go after that bunch they have more holes in their logic then swiss cheeze. I do think they're dangerous. Any response I have to that thing they call Autism Speaks wouldn't be fit to print, but I sure would feel better if I wrote it. I think that dumb b***h Jenny McCarthy is as well. (Did I really say dumb b***h? Yes I did.)

I don't think any submissions I might send them would come from Wrong Planet, or any other group. They would just come from me as a "concerned citizen". I don't carry any official affiliation. I sought the opinions and feedback here because I felt it was important to see make sure I addressed the concerns of the group I am fighting with. This would not make Wrong Planet and Autism Speaks partners in any form.

Nicholas Gray is going to submit positive images, not WP. So on reflection we are not entering into a partnership with them.Nor should we ever as a forum.

NT /Aspie difference ... so we only talk for ourselves?? Oh?

Settling down to watch World News... ie Usa news with other nations thrown in

Ok, he didn't say that in his opening and as I said I've only been following it in an off handed manner. However you don't need to read things from time to time here that think we should set off as some WP crusade and it's just my take on what I feel the import of WP is. I say bravo to those that take up the standard and get messages across that are accurate. (We do know of one group, do we not nannarob? ) And again I will say I thank Alex for his continued work on WP. If ever was there a grass roots, I don't think it can get any grassier than this.

I feel an analogy coming on...

But first, I'd always come across it as "Singing to the choir" (which seems quite a good idiom - more self-explanatory than most!), however, I seem to only be able to track that down as its acronym: STTC. This idiom I take as essentially secular and equivalent, mostly, to "Teaching your grandmother to suck eggs" (where we have, I think, the slightly less obvious explanation that your grandmother would have lost all her teeth, and would already be familiar with raw eggs as a convenient foodstuff, hence would not need your instruction on the most efficient way of imbibing them.)

Then, the other one I have also come across was "Preaching to the converted", which also seems straightforward. This one I take to be concerned solely with belief. Hence, I tend to associate it with religion, which I feel is synonymous with belief in anything. Anyway, it conveys little more, to my mind, than wasting one's time waffling on vociferously about something that your audience is already in agreement with you on.

However, the internet says that "Preaching to the choir" is the main idiom. Strangely, I can't quite see the meaning of this one. Maybe it's because the choirs I've been in have all been secular. Preaching to such a choir would be perfectly sensible (in as much as preaching makes sense at all), as you would be addressing some mix of believers and non-believers.

Whoops... maybe I'll post this silliness first, and then get on to my analogy.

krex,

Your post regarding the Autism Speaks has made me stop in my tracks.

I am in deep thought about your comments. I am going to think about it some more overnight (my dreams are very helpful) and I will re-post in that thread.

I don't know what the answer is, I just know that Autism Speaks can not be allowed to continue on their negative track.

I'm deeply scared of when my sons are old enough to hear this message. We are doing everything to help them with their self-esteem and acceptance .... but a few minutes watching some of Autism Speak's nonsense would quickly undo all this work.

Oh the thinks I will have to think! (Dr Seus misquotation)

Helen

My analogy concerns polystyrene cups and the sea.

Have you noticed, down in the corner of a harbour, or in a niche anywhere on the littoral, the bits of washed up polystyrene cup, often green with algae?

[aside]Littoral: the region lying along the shore. A word I don't use often, and which I first typed with but a single "t", but Mozilla's spellcheck reminded me of the correct spelling.[/aside]

I wonder what the membership figures for Autism Speaks are? I would imagine they are close to the maximum they will ever reach, with their present policy. They (currently) show a mindset that can only survive by suppressing information.

Next, I've just posted a graph of the membership of WP. We seem to have marginally dropped below doubling membership each year.

I'm going off my analogy a bit, but I was thinking in terms of WP being the sea and the few recalcitrant members of Autism Speaks being the battered pieces of a polystyrene cup. I just feel that we should "wash over" them, and draw all the genuine, thoughtful parents and so on, out from their cocoon into the open. Who is concerned that there may be some who remain in their rigid, unseeing (unsightly) state? Casualties of truth.

I'm in favour of talking with Autism Speaks - I want to steal their minds.

Out of curiosity lau...have you gone to their web-site or tried to participate in their forums? I haven't and am considering it...(my real motive is to find out if they post their financial statements.) I ask, because there have been several threads on WP from people who did try and communicate with the membership...offering an alternative perspective on their "disease" model and were met with a lot of hostility. I think some of their membership may have even wondered over here into the parents forum.I try and stay out of there because it often just upsets me...but occasionally I wonder in from following a link in the recent posts listed on the front page. I have always tried to be "gentle" with parents because I don't want to push them into the arms of autism speaks...but sometimes their cruelty to their children is so extream.....it's difficult to believe they have the "capacity" to change their mind set with out a few years of therapy(and some classes in logic).

Autism Speaks raises money and lobbies based on a "disease model" of autism wishing to spend said money on genetic testing to find a cure or get money for parents to use ABA type therapy. How could they then include persons with autism who do not think they are diseased. Pardon the analogy but it seems to me about as likely to happen(or as useful) as asking Hitler to include some positive images of Jewish people in his plans for genocide. "Hey Hitler...just to be 'fair',shouldn't we let people know about all the famous Jewish scientists, artist and scholars? It just seems counter intuitive to ask an organization to show the human positive aspects of autism when the premise of their goal is to "cure autism" not assist autistics with living happier,more fulfilling lives. I think I will go check out their web-site today, (assuming they don't have an aspie filter to keep me out )

About the graph....it would also be interesting to see the same graph in visitors vs members because their seems to be 10 people accessing the site to each one who actually joins. They are also an impoprtant number as they reflect people who maybe benefiting from the information and gestalt of WP but just to shy to reach out or feel less need to "socialize" then some of us more "wordy aspies".They could also represent government agencies or researchers(wishful thinking?) or autism speaks spys....

While checking out Autis Speaks web-site(still looking for how they spend their money)...I found the following link to be of interest.

It appears that WP members have "infiltrated" there group and some of them are a bit "put out" by our pro-exceptance message...hummmmm




http://www.autismspeaks.org/community/f ... php?t=5683

There seem to be a lot of generalisations about us WPers over there, can't take it seriously with so many errors in it.

I think people miss the point when others talk about cures and things. The way I read it, it is not about avoiding anything that might help but simply being accepted for who we are but its complicated and probably quite hard to understand in its fullness.

Good one Krex, good one. I think the Hitler/Jewish analogy to be very good. Normally, if you throw Hitler into any argument, you've already lost. I'm not sure this time it isn't a valid point and one that would resonate. I have no problem with any research, causal or other. It's what is done with the knowledge and so far that unspeakable herd hasn't shown any end result of their "cure". And if this miraculous "cure" were to be found, it's like... ok, we invented the Atomic bomb, we can control this thing. I'm sure there were aspies involved inventing it, but it probably was an NT idea, we just figured out how to do it. If it were an aspie idea, we would have done it and put it in a pile of organized clutter and not been able to find it again. But to be slightly serious, if they set that bomb off, just what are they going to wipe out? They might not be smart enough to see what isn't there anymore.

I do think we need to be a bit vocal and I think we are. Things as simple as Smelena's home vids will go further than any disease model they hype. I mean that's home, mom and apple pie and that's a sell that works. And here is the real winner of that type of sell, it's the truth. It takes time, this won't happen over night. But, you can't give them an inch or they'll take a mile. And besides, convince the law makers if they side with us, we'll vote for them. The dead don't vote, unless you live in Philadelphia.

As I see it, they really don't want Autism to speak. We frighten them.

I am so glad to hear that I am not the only one who is frequently upset by that forum.

I used to avoid it because I found it so depressing, and then a couple of weeks ago exploded because there had been just one too many descriptions of the horrors experienced by children in school, being made to go to school, without any choice in the matter, even thought it seemed tragically clear that school was probably the cause of the worst troubles/distress.

I felt almost sick with rage and grief about that. So posted a few comments and threads to that effect. But yes, the total blindness to school as an often ,( when there's a parent who can stay home), unnecessary aggravating factor in childrens difficulties was horrifying.

I know what it's like to be on both sides; the parent struggling to "hear/see" my child, what he wants and needs, aswell as the AS child i remember being. And I have made some terrrible mistakes as mother .

I am aware of how deeply wrenchingly awful i feel when I remember things I did wrong, out of blindness and ignorance, and so can see that it will always be difficult , because very painful, to admit have not heard ones child, have missed things, have misread, imposed prejudices, have simply failed to think, or allowed others to think for me.

It is agonising to think of what I could have saved my son if I had been more aware, more sensitive, etc, more knowledgable/experienced. So I realise how much parents must want, need, to carry on believing in what they are doing, because otherwise... almost unbearable pain at what have done.

Yeah ouinon the parents forum can be a tough place to visit and I can only do it once in a while and still maintain my sanity. Ok maybe my sanity is a debatable point. But you know, with the parenting thing, any parenting, sometimes we get lucky and the kids have kids and then we get a chance to do it right. Be good to yourself, no one is perfect at the parenting, even if we do get a second shot at it.

I don't know about France, but the education system in this country is seriously broken. And that school experience of mine still haunts me.

krex,

I've posted another couple of posts. What you wrote was thought provoking. Basically, I think we should stay away from Autism Speaks. Alex, Katie and Nicholas could call from submission / stories / videos from a range of WrongPlanet members then work out a way to market them. But step 1 is gathering all these stories. A lot of the stories are already on WrongPlanet, it's a matter of seeking permission from members to have their stories available for advocacy purposes.

http://www.wrongplanet.net/postp1332113.html#1332113

Lau, I think your analogy about polystyrene cups at the sea and your discussion regarding Autism Speaks membership and WrongPlanet membership were great. Can you post them over in the Autism Politics/Medica Representation Forum so more people can read them.

Helen

OK...I just finished the 8 page thread I posted here from Autism Speaks....basic(biased) summery...


Here are some of the emotion laden language used about members of WP and those who have posted in Autism Speaks......

posing as parents....(hello,many of them are parents???)
WP does not represent the majority of people with Aspergers(and AS does represent majority of Autistics?)


direct quotes...

"Snot-nosed punks "
""paranoid"
"Delussional weird ideas"
""screaming at us"
"Shoving it down out throats"
"Zealots"
"stirring things up"
"vicious attacks"
""delayed teen rebellion"
"Badgering us"
"They aren't parents and so have no right to comment on what it's like to be autistic"
"mean"
"sour grapes"
"They are not autistic they are aspergers"
"I will stop trying to cure my granddaughter when she can commnicate as well as you"
"They are their own worst enemies"
"They cower in fear and paranoia"
""It eats at their souls"
"ignorant opinions"...this was said because evidently we don't attend board meetings???


But I saved the best for last...

About 5 pages into thread it turned into talking about how dangerious aspies are.....relating them to school shootings. One senior member brought up how scary it will be when these currently DXed aspie kids will grow up and recieving no assistance as adults will go on shooting rampages.(oh yea when do we get to start)


I thought there were several people ono the thread who were logical and tried to challenge some of the name calling and miss-information(most of them were self defined autistics).

One of the more interesting(to me) aspects about the complaints of the regular members was that many of these "disruptive posts and crazy paranoid ideas" were by high functioning autistics. Some how,they have over looked that some of them may have issues with "proper communication" when under stress(like being called diseased,defective and in need of a cure?) No slack was cut for their communication defecits, social skills issues or honesty....even those are(or should be) known components of aspergers.

The real communication problem seems to be the whole concept that autism is not a disease or psychological problem that the "cure" to is creating more NT like behavior. Until we can get past that basic misunderstanding, I don't see much hope for communication with them.