I propose a question.  Most of us here agree that Autism Speaks objectifies us and speaks "about" our lives instead of letting us define them.  The one cartoon I saw about the "brave" mother "courageously" discussing her urge to murder her own daughter (right in front of her daughter) really took the cake for me.  I have never even given Autism Speaks any benefit of the doubt since.

My question is, "What is the alternative?"  Is there an organizational model that can take their place and usurp them?  

I think that parents of Autistic children often buy in to the cure thing because nothing else is presented to them.  It is their way of loving their children, and there is no alternative concept given them in so many cases.  Yet, "cures" seem to involve genetic screening and we all know where that one leads.  (Please see my signature thread)  At the same time, you can kind of understand their position, simply given that they are in the situation they are in.

Reaching parents of young children with "lower functioning" Autism is going to be tough.  Please understand that I define "lower functioning" in a utilitarian sense.  One is "lower functioning" if one does not function in a given social context, namely that of our society.  I am entirely relativistic about the label, with no sense that it has any meaning about someone's intrinsic worth as a human being.  (Again, see my signature thread)  

Since some of us do better in society than others, some are seen as less of a "problem" to NT's than others.  That is the basic definition of "empathy" for many NT's.  Being literal, we tend to think that "empathy" means, well, empathy.  Hence we try to cultivate it.  Then we find out that is was never empathy that we lacked.  What we lacked was the ability to be less of a problem to people who simply don't want to be bothered.  "Higher functioning" people mastered that skill more, while "lower functioning" people did not.  Real actual empathy, sensitivity, intelligence and creativity had nothing to do with that distinction, or with the distinction between us and NT's for that matter.  

Hence, the cure issue.  It is an issue that is a simple discourse for many people to understand.  Curing Autism is a "good cause."  It apparently removes a problem.  And, it seems to make parents' lives easier.  Autism Speaks allows for a simple discourse, one centered around the removal of a problem.  Ours is a more complex narrative.  Most of us define ourselves as "anti-cure," but what are we for?  This entire forum divides over issues that seem to revolve around sentences with syntax that defy grammatical logic or even color coding.  We cannot agree amongst ourselves, and yet we suggest to parents who are often struggling that they give up the one hope that is dangled before them?  

There needs to be an alternative to a cure-based approach that will catch on.  It is not a matter of what you or I believe.  We can believe what we want, bout our ideas need to catch on or the anti-cure meme will be smothered.  I do not define myself as "anti-cure" until I have something better to offer.  I do not as of yet.  That is sad because I know what "curing" someone's mind set means.  It is curing one's neurology.  It is legitimizing forms of mind control.  In my crazy theory about history, the State has been "curing" Autistics in various ways for 10,000 years.   But, I digress.  I have seen little in the way of something to actively replace the "cure" meme with a meme that will actually be easy to understand to a broad mass of people.

My only thought is that we replace the "cure" meme with a "belonging" meme.  We can form an organization, bottom up, through direct democracy, that includes parents, Autistic kids, and Autistic adults.  It can be a kind of social forum.  That forum would advocate in schools and in workplaces.  It would help Autistics to have some power in the world around us.  There is no one answer.  But, perhaps having some power would go a long way.  It is a thought.  It is also a participatory model that would give struggling parents something to *BELONG* to, replacing the cure discourse with a belonging discourse.  

One wonders how well "low functioning" behavior might improve if there is actual power that such folks could wield, defining life along their terms?  If a child is interested in snakes, then the child could have a space and time for snakes in the forum.  Perhaps a presentation?  I think that it could work.  And yes, if the cards are played right, the cure model might not be so much defeated (a bit too dualistic for me) as superseded and made irrelevant.  And yes, those who currently support the cure philosophy would have something powerful to grab hold of, the sense of belonging that many of them have been looking for.

So, do we dare propose an actual alternative to Autism Speaks by creating a bottom up forum that would seek a kind of direct democratic power from below?  This is the question I leave before you.

This site is already doing that for some; but it can't do it for everyone, nor can any other organization or forum.  

There is a requirement for functioning, and social interaction, that is required to participate here, that is effectively no different than any other social medium.  However, it works well for those whom it works for.  It is evident that people gain a positive connection to each other by visiting here.

There are Autistic individuals that are mind blind, and have no clue that they offend others.  There is no requirement of high or low functioning for that problem to exist.

There are many individuals with Autism with learning disabilities, that do not communicate well in writing.  That is not acceptable behavior on many online forums that demand good grammar, punctuation, and spelling.  

There are few to no online outlets that works well for many of those individuals, that will allow them to gain a sense of belonging.  Hopefully, they gain it through real life, family, and friends.

And then there are the family and friends of those individuals, that look to morale support from others.

People seek until they find what will work.  The more opportunities there are the more chances someone will find the support in life they need, whether it is those that are hoping for a cure, or those who are hoping for moral support.

Autism is a social/communication problem that is truly serious for some whether or not they are considered high or low functioning.  I have yet to come across a site that will accept individuals that will not comply with the groups shared implicit/explicit meaning of acceptable social communication.

Autistic people are no different than anyone else in this respect.  There are those autistic individuals that cannot meet the standards of others, through no fault of their own, whom need an almost unlimited amount of tolerance to be accepted.  I'm not sure what eventually happens to them.

I am not being critical of the decision to ban the individual that was banned here not too long ago, and don't want to bring his name up for controversy.  

But, if you observed the phenomenon of that form of autistic communication, one answer would lie in a place that could tolerate that type of communication, as well as for other areas of the spectrum that might not do so well in written communication.

The bottom line is, there is no answer that is going to solve everyone's problems or needs.  

Very few of the hundreds of thousands of parents in the cure camp, are ever going to be convinced their child does not need a solution to their problems. That's human nature for parents. It's the way it's always been and it's the way it's always going to be.  They will hang on to any hope that is available.

The benevolent answers are to provide a number of places where most can find a place to belong.  

I've seen some amazing perserverance from some who desperately seek to fit in, and have no idea how to do it.  I'm one of those people.

I cannot find a way to socially communicate, unless I am solving a problem.  I wonder what it would be like to have a friend.  But that is no one's fault but my own.  I am trapped in that place because of who I am.

I like to observe more than participate.  I found it extremely interesting that when I first came here, the individual that made me feel the most unwelcome, was the only individual that couldn't understand what the problem was with the person that most could not tolerate, here, recently.

Some of us live in very different worlds, and the barriers are difficult to cross.  My analysis of the situation, which is my only way to communicate, suggests that what you are suggesting is impossible.  

The most we can hope to do for others is to tolerate their differences, whomever they may be.  Whether they are cure, anti-cure, learning disabled, mind blind; there are no limits to differences among individuals.

Some of us do it better than others; that's part of those differences.  The worst possible thing to do is to attempt to convert someone into someone they are not.  

Whether it is a child that would rather talk about snakes, a parent that would rather talk about a cure for their child, a person who is challenged in their writing abilities, or a person that is obsessed with semantic differences.  

There are some barriers that are almost impossible to cross.  And there are differences in behavior that are almost impossible for some to tolerate.

This forum has probably saved lives, for some who had no where else to turn for connection.  That is priceless for those whom reap that benefit.  And there are also casualties that come for those that cannot meet the explicit/implicit requirement of social engagement.

I feel bad for those that can't meet that requirement, but I cannot escape the reason why.  For the most part, in my life, my friendships have been the vicarious ones I have seen others enjoy with each other.

I've lived for over 50 years, and never even realized it until a few years ago.  That is a type of blindness, that some of us are not even aware of.  I was more alone than I could ever know.  It was much easier when I didn't understand it.  I saw that in the person who was banned, and it was like watching myself before I understood.

I guess that is an ironic prize of perserverance.

Autism Speaks relies on the view of autism as a disease, a disability, a tragedy that afflicts a family.

One way to challenge that is to "broaden" the field a little. Extend the definition of autism, on our own terms, to include those who have a balance of positive and negative traits; who are not "disabled", just different. I know that there are many members of AFF who are diagnosed and yet present a positive example of autism. We need more.

It suits autism speaks for autism to be seen as a disability, a mental disorder, a sickness. We should not play the game on their terms.

No.  We should not play the game on their terms.  What I am suggesting is that there be some assembly that can redefine the game and have a presence in the media.  AFF alone cannot do that.  AFF can give rise to something that can.  

Sadly, Autism Speaks has the advantage here and that has to be faced.  The existence of "high functioning" people will not change that fact.  In fact, high functioning people so-called can even be marshaled as evidence that a cure could work! (Co-option) What might change the game would be a new meme to replace "cure."  That replacement actually has to catch on.  It cannot be how someone on this forum deeply feels because that is your deep feeling but it has not caught on and it is time to face it.

"Cure for Autism" is catchy.  "Accept Autism" is not catchy.  "Accept your child" is something that parents feel that they have to do and will never admit that they feel otherwise.  It is the ultimate taboo, as I have seen from personal experience.  Hence, the "cure" meme is a salve for the guilt and shame of really wishing one could re-engineer one's child, but then realizing the contradiction, that such a child would not really be their child.  A cure model seems to reconcile that difference.  Endless lectures from adult aspies on "acceptance" will not.

What *MIGHT* take the place of the "cure" meme would be a social therapeutic model.  In other words, an organization that is self-organizing, taking the social skills of NT's and fusing them with the individuality of our camp, might function in a way that redefines the narrative.  It cannot be an internet forum.  It has to meet face-to-face.  It has to give support to parents in a face-to-face sense, from people who really care and not from people trying to raise money for the ever elusive cure.  Aspie adults can be met as equals, as fellow adults, and actually provide support.  Yes, you are capable of it.  That means *YOU*.  It just might mean that you do so in your own unique way, without realizing that you are providing support.  Giving a presentation to an assembly on your special interest might actually be that support, all the while you are not thinking of it that way.

Autistic children would be met as equals (imagine that!).  They too can give presentations, and actually do for real what Special Education teachers claim they want.  They can actually advocate for themselves, and develop the skills to wield actual power in their lives.  They will not get everything that they want, but who does?  This organization would grow from the bottom up, meeting in school cafeteria's.  It would wield real political power.  Cure advocates would come, of course, but they would be confronted with alternative ideas.  There would be arguments.  There would be discomfort.  There would be discussion.  There would be consensus.  There would be change.

We can also forget about this idea.  That is fine.  Autism Speaks can do the job of advocating for us.  By choosing to let them take the field, we are voting for Autism Speaks.  If that is the choice of the Spectrum community, then I may not agree with it but I accept it.  At least I present an alternative model.  Here I have done it.

The only way we're going to be able to be accepted as we are, and end the cure model, is by demonstrating that we can live fulfilling and, most importantly, productive lives. This goes for us all, not just the high-functioning ones - if parents see that their severely autistic child can grow up to live a happy life and contribute much to society, they'll be much less likely to push for a cure. However, most Autists can't bootstrap themselves. This is why I believe we need an organisation that will support such people as much as is needed, ideally making money along the way (they're not very productive if they're a net economic drain, eh?).

Maybe even Autist cultural organisations. They have ones for nationalities, religions, ethnicities, sexualities... why not neurologies?

The problem is that your idea needs cash that grows up from roots in the ground, and I am not sure that there is a money root.  

On the other hand, maybe there is room for both models.  Your idea and mine could complement one another, just doing different functions.  

What about ASAN? The local branch in Phoenix does quite a bit of outreach. The Autism Society of Greater Phoenix is also a good resource. They support the outreach of the adult autistics.

Another shout for ASAN from me. I've met the Ohio branch and they're all awesome people.

Perhaps if we confront Autism speaks on their own forums, events and rallies, and try to convert their members to our way of thinking?

You'll just get banned.

ASAN do go to AutSp rallies and put our view across.

they have no forum anyway. Figures.

Are you sure about that? They used to have one.

There is no link on their homepage.

No matter, like you said it would probably be like proverbially urinating into a force 9 gale.

I think it's some hidden part of the website for members only? Is there a login?

I have gone to the yearly ASAN rally and handed out leaflets, but they really don't want to hear from us.

You might be able to access their forums if you donate, but I bet they'd kick you out real fast - and not return your money