Is Aspie A Political \ Advocacy Party?

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No not at all. A cure is a protected and sacred liberty. I however refuse to be dragged into the quick sand of abortion politics as my purpose is serving the community in another fashion. You should consult legal advisory about the issues and all I can see that is a big difference is viewing the entire makeup of what comprises the differences of individuals with autism brains vs. singling out what impairs a person in the cure context.

Fascinating. Within the same sentence you have stated that we don't know how the human mind works while simultaneously saying a cure would destroy your mind.

If I fix my car's engine I didn't destroy the car's engine. It's fixed.

Cure isn't that far beyond our current technology. The various technologies are getting closer to coming up with the knowledge necessary to understand the things to be cured, and with the procedures relevant to cure. A lot is known regarding how the brain works, and that knowledge is growing, and will grow at increasingly higher paces as the technology used to get that knowledge advances. Cure wouldn't destroy "minds". The brain deals with many disparate aspects of one's life. Cure is for altering the parts of the brain that are necessary for ability, not for changing personal identity.

That was pretty much my point. But saying a lot is known about the brain is a bit misleading. Sure we know a lot but what we don't know vastly eclipses what we do.

Genetics seems a dead end for a few hundred years at least. Everything that has been proven, says no genetic markers will be found.

The broader twin study showed that autism is not as genetic as was thought.

Study for a cure is now the study of prenatal development, looking for something that can be proven to lead to the differance in brain development.

Likely candidates are chemical exposure, a virus, something that would set the developing cells on an altered path. There are chemicals known to produce autistic like behavior in mice. Of course, so does head trama. Autistic like is not autistic.

Since all of this may happen when it is eight cells, and expirments on human stock are forbidden, the likely results are a lot more on what does not cause autism. Science is mostly about proving what does not work.

We do know some viruses cause development problems, but nothing has been shown to cause autism so far.

It is a misconception to view this as money wasted on autism research that could be applied to the problems of the living. The research would continue, is mostly funded by other sources, and the small protion of most grants provided by Autism Speaks are only a reminder to consider autism.

Peer reviewed research projects are chosen for their broad application to advancing knowledge. Learning more about how we develop, the actions of genes, applies to the whole population.

The broader twins study did look at autism, but the outcome was conditions are not strictly genetic, there are other factors to look for.

Some twins die of a heart problem at forty, the other lives to ninety. The problem is not just genetic. All of the major killers are harder to study, wait till they die, where autism studies give rapid results that do apply to other conditions.

All scientific research is expanding along a broad front filling in the blanks of knowledge. The top people in each field are laying out the direction of study long before the money comes along. Each research project lays the foundation for the next. Most produce no useful knowledge, it is just the grunt work of science. It is still a needed base of knowledge.

Disproving things is just as important as proving something. So far, everything about autism has been disproven. There has been some good, drug treatments have been shown to be useless and harmful. As that has been the treatment since long ago, stopping it gives us undrugged autism.

To the far edge of science, and well into science fiction, it has been proven that this generation of researchers have gone as far as they can, with nothing to show for it. It may sound useless, but it was a needed step.

The failure of a best effort at prevention or cure leaves only treatment and support. Treatment of children, behavior development has been shown to work. Still autistic, but with a greater awareness of the world outside themselves. Function improves, and a slight differance changes their future from life in an institution to a group home, or independant living.

This is where the research money is going, for the simple reason that it will reduce the future costs of autism.

It is still a plan directed at children, supported by millions of parents, and they do not listen to the views of adult autistics. For one, the very existance of adult autistics has been denied for decades. The official view was it was a condition of children that they out grew. It was called a developmental delay, as most of us did just live and work as adults. You do not have to be very high functioning to pass for human.

The parents cling to the hope that their children will outgrow it. They do not want to hear lifetime condition.

Yes we continue to have problems, but they are considered minor compared to one in seven being treated for depression, lots of drunks, more in prison for various reasons. When all humans develop conditions that kill them, sooner or later, our differance of thought and perception seems trivial.

We will not get in the game by objecting to the behavior of millions. We are already on everyones ignor list. Government may be stuck with the cost of the children, but they are not going to open up to all of the pre Dx, joining in. The parents are only concerned about their children, not the concept of autism.

While we may know the future better, no matter what they do the children will grow up to become us, no one will listen to us. We are so few that trying to change the minds of millions, is a waste of our time.

What we can do is find common ground and support them.

Political tactics will fail, diplomatic relations will work.

I absolutely agree. It is pretty obvious that whatever our "difference" is, it is in some way perceptual, and every environmental factor that contributes to the development of our identity and perception is filtered through that, and also, every single coping skill we develop relates only to the context of it.

There is an argument to be made that destroying the existing identity of an infant to replace it with another would have no conspicuous ill effects compared to the benefits...but how do you establish that?

Where and why do you set the cutoff point?

Beyond infancy...not only does your entire identity and personality cease to relate to the factors that formed them, but also you have literally NO RELEVANT COPING SKILLS - not even the basics you had in preschool.

Hopefully you don't mind me using you as an illustration Alan, but supposing they could give you a pill, or microlaser surgery, or whatever, to change one, tiny, simple straightforward thing (though why on earth you would sign the consent forms is beyond me ) - your sexual orientation...

Everything else would stay the same...still be you...even still be autistic...

That one, simple, binary change to something that has always been part of you would blow your mind to kingdom come within a matter of days rather than weeks, and if there was a way to recover it would take decades...to relearn everything you ever learned since infancy...and by the time that was all finished you definately would not be *you* any more, and almost certainly would not be employable (if only because of a combination of age and such and huge career hiatus.

That is just one, simple change...imagine how much worse it would be if it was autism they could "fix up"?

One could make the argument that a non-verbal autistic would be better off - but - however much head banging, smearing s**t on walls etc and so forth they like to cite (and this stuff does happen), he has still been developing an identity, personality and coping skills in terms of his autism since the day he was born - and even the low functioning autistic mind is a very efficient machine in terms of following the best possible developmental course for the individual.

None of the non-verbal autistics I have seen seem to spend any more time, in any deeper distress than NTs...they just express it differently, sometimes in more challenging ways.

How the *FECK* can anyone possible predict where "fixing" their autism past infancy will leave them? How do they know for sure that they would not just be creating a cogniscent human being in constant, intolerable mental and emotional agony? Or maybe some kind of "super psychopath"? If they did, what are they going to do:

Reverse the procedure? Does that sound like something that is going to work? Because he would still be dramatically changed by his new experience...
Or would you just quietly put him down?

We certainly don't know enough about genetics, genetic engineering, how the brain works, or the consequences of significantly changing neural interconnections within a brain to be able to carry out such an intervention successfully.

The problem is that 'I' am my mind which is the operation of my brain. Change my brain and 'I' change. Change my brain significantly enough to make it like a neurotypical brain and the 'I' that emerged from the recovering brain would not be very close to the 'I' that we started with. It wouldn't think the same way, it might have lost access paths to memories, it may not be as creative, etc.

You might end up with a whole person again, one that 'worked' according to neurotypical standards, but it would not be the same whole person, and something important and wonderful would have been lost.

I think we're centuries rather than decades away from having knowledge necessary to successfully perform genetic engineering on post-natal autists that would make their brains similar in structure and behavior to neurotypical brains.

I think that the brain structure and interconnection patterns that make us autistic are significantly involved in the 'parts' of the brain that are involved in personal identity. Also, most important to me is creativity and how I think - are those part of 'personal identity'? Would they be affected by a 'cure'?

The only honest answer, I suspect, even for centuries to come will be "who knows?" - case by case...

...and that just isn't good enough, is it?

In my own lifetime they still used lobotomy and locotomy http://en.wikipedia.org/wiki/Lobotomy to "cure" autistics (as well as others)...until enough people finally noticed they did not usually work and often did incalculable damage...too bad about all the guinea pigs it took...

(edited with my apologies for accidental misattribution of quote)

Last edited by Zeraeph on 10 Sep 2011, 12:08 pm, edited 1 time in total.

You are most welcome to use me as an example. You did it very well.

Having my sexual orientation changed would be devastating.

Having my brain turned into a neurotypical brain would be unimaginably worse. I suspect that much of the best of me is due to my having Asperger's. I'm one of the most creative thinkers I've encountered, and I do my best work immersed for hours or days in worlds of my own creation, working on new algorithms or figuring out what happens next with a group of people I'm writing about. Most of what I know has yet to be transcribed from those worlds to a computer or pad of paper. I would loose these wonderful things and lose the ability to make them any more.

For me, a 'cure' of either condition would be a curse, a violent attack on who I am.

My body would probably survive the first attack. It would not survive the second, not if the new-me became aware of the enormity of what was lost.

You would either have to be a man of extraordinary self-loathing, or a person who is aware of such little achievement to want to do otherwise.

We're not that far away. There's lots known about the genetics of brain function and of what kinds of variations in neurology-relevant genes lead to forms of autism. The technology to expand and interpret that knowledge is a lot faster these days. Gene therapy is undergoing advances to be highly intricate and specific. And the goal shouldn't be stated as turning an autistic brain into a neurotypical brain. The goal is making someone higher-functioning/increasing aptitude. It's already been shown that the extent of brain differences within autism vary with severity level, with the least severe having a lower extent of such differences. There's no one etiology for the entire spectrum. The genetic/anatomical basis varies with functioning level. Don't worry about your identity. Nobody is trying to cure you of anything. You seem to not know much at all of the science regarding autism and the technology out there these days. That doesn't mean that those involved aren't closer to coming up with a cure than you think.

Yes, a lot of stuff said for which there seems to be no evidence forthcoming in the search for a cure. I'd like to see the proof of your claims. I don't doubt great advances in medical research, but I do doubt you just saying that it means we'll have some 'cure'. If no one is trying to cure us of anything then why are they searching for a cure? Why are they trying to find the key to remove an ailment?

This whole affair over autism is just rubbish. People make death threats over the cause of autism. People have never talked about the cause of autism: It is determined solely by its symptoms, many of which on this forum, actual bleeding 'sufferers' don't even agree on and for whom disagreement is for some strident people worthy of an inquistional barrage of insults. This sort of sacrificial narrow-mindedness is the cause of half our ills.

You're not considering the things that others are telling you here regarding the technology of cure. I think you know something beneficial could come of cure, but it seems that you are very scared and resistant to change, and want to preserve the status quo. This abstract preoccupation with individualism and individual experience of one's surroundings, doesn't explain what's really going on for those who are living. This attachment to this highly-specific "identity" that someone gets as a result of all of the conditions in which they have lived is unnecessary. What about the similar identities that many get as a result of being exposed to the same conditions that affect many in society, such as the ones based on intolerable living conditions? What is so sacrosanct about those?



Efficient machine to follow the best developmental course for the individual? Who is to say there should be different developmental courses for individuals? All need to develop to maturity, so why should some have slower and incomplete development compared to others? Who is to say it is "best"? You seem unaffected by the distress of other individuals. They sure do express their considerable distress, and it is very intense and intolerable. Those who are functionally well off who don't have to worry about lacking ability to do things, much less basic things, aren't suffering anywhere near the kind of distress experienced by those who do lack basic abilities.



Why would you care about some mental and emotional agony that comes out of some totally uninformed hypothetical idea of what cure is, when you don't care much about the real mental and emotional agony that lower-functioning autistics are going through now, have went through in the past, and will go through in the future? I think these disaster scenario ideas that many like to mention when thinking of cure, are a diversion from the inhumane and cruel mentality and conditions that are currently being applied to the problem with no alternatives. There's too much of this atomization of individuals away from others and consideration of individuals only in isolation.

Whew...sorry but, to me, every word you said there was just creepy, dalurker - reinforced my original position if anything...

There still needs to be further research towards it, which would build on previous knowledge gained. Researchers aren't working on it if they don't think it will lead to a cure eventually. Go read up on current research and technologies if you want to know. See what the scientists are saying. Those who are that high-functioning like you don't need a cure and consequently aren't the focus of the goal.