The future of Autisim!

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Poor choice of words. My experience as been the quite often the treatment of people with disabilities is not positive. Not "my" autism, but any disability. There is a range of course, from sincere people that invest huge amounts of energy to those that bully the disabled. In the middle are a great number that really don't care one way or the other. These people in the middle are sometimes the most exasperating. These are the ones that set the tone of society and the insincerity and ambivalence is as large an impediment to quality if life as the schoolyard bully is to education.

I'm not sure where you get the idea that I think a cure should not be researched. I'm ambivalent for myself. Not enough is known about brain science and I am not inclined to experiment on myself. If I were lower functioning, it would likely change that equation.



The connections between the brain, perception, processing sensory input and personality are deeply interwoven. It is not implausible that a cure would significantly change personality.



Hence my ambivalence. I'm too old. Anything discovered today won't even be available as a treatment for a decade or more.



Which is where I put my energy.



Of course they do. Eating too many cheesburgers makes one fat. Cause and effect is in full force. But this is not what I believe is driving the fear of those that are anti-cure. When you have had to experience overt and covert discrimination all of your life, when the society that sanctions that discrimination talks about "fixing" you, it isn't hard to be skeptical and maybe even a little paranoid. There is even something of a mixed message coming from those that advocate or provide services for autism. It is drilled into us that we each have value, that we CAN do things and be successful. That we are supposed to have high self esteem. If all these are true then why a cure? I am told me all my life that "I'm great" (even though when measured against the world at large I'm really not) then tell me what I am needs to be fixed? It confusing.




Nothing wrong with this dream. But in-vitro treatments feed into the abortion debate and raise the specter of euthanasia. It should not be surprising that it quickly becomes emotional.

In-vitro identification is far more likely to lead to pressure to abort potentially autistic children than it is to lead to a "cure." This is what's happening with Down's Syndrome, and Down's Syndrome is not scrutinized or demonized so intensely.

There are people working on possibilities to "cure" autistic adults. One of Alex's videos, as I linked in the evolution thread, talks about this.

I kind of wish we could have a serious critical analysis of how money is being spent on autistic people before simply talking about how expensive autism supposedly is. This has come up before, and anbuend pointed elsewhere out how a lot of money goes into services that are unhelpful or potentially harmful for children. Or the relative lack of services and support for adults.

Focusing on a cure continues to treat living adult autistic people as expendable.

Uh...

Gotcha.

And I can't even write further on this thread at the moment (not about the abortion issue or anything), because I don't want to end up having to be put in the position of defending my existence (a position nobody should ever be put in).

You have been discriminated against your whole life that you speak to me like this? Whatever for? I "know" discrimination first hand. From growing up female in the 60's as a tomboy (was told numerous times how my life/career choices would be limited) to joining the military as a female and then into a male-dominated corporate world. I have faced discrimination and sexual harrassment/abuse over and over again. Just saying I "get" the premise of that word even without having an outwardly noticable disability...

Still, I am not making any "leaps" about society as a whole based on the few (relatively speaking) people who would discriminate and hurt others. Have you ANY insight as to what sorts of "research" are being done in the realm of Autism today? Does anyone on this board besides me spend time talking to Doctors at schools like OHSU Or research the PubMed databases on this subject?? Has anyone bothered to speak to the people from "Autism Speaks" to ask them where their beliefs lie in this thing called "cure". You guys are throwing out all these ideas based off your own bias and wild fantisy without the underlying facts. THAT's all I am saying. The facts are far less "scary" than what you are imagining and they even make sense in most cases.

On the subject of neuroplasticity, the work I am doing today to gain Social Skills is changing my personality. It is making me more "people" aware and more able to connect with my peers, coworkers and family. This "change" of my personality is actually been noticed and commented upon so I know I am not making it up or imagining it. So long as it doesn't drive me to shut down, I don't see these "changes" as a bad thing as I believe I am a "better" overall person today than before I started this journey. (more on that and the "balance" game in my social skills thread later)

Oh and btw: (not to Wavefreak specifically of course) I am pro-autism as well as pro-cure. Of COURSE there has to be awareness in society that neuro-difference exist and that we have to make accomodations for all sorts of people. I am NOT suggesting that anyone who is on this planet today be made to change or to justify their existance here. That said, we do have a documented problem in $$ in this disorder. It is not just a matter of changing things around as Anbuend stated in another thread. The viewpoint she has of this "ideal" world where neighbors cared for one another is so far distant from anything that would be possible in this country at a large scale. Not saying the concept is "bad"... Just saying it would NEVER be. It would require a complete rewiring of our culture today in fact. So it isn't just about redistributing $$ or changing the system at large so that we can afford more disabled people. It isn't just about taxing the "rich" more either. What happens when you start to unduly tax corporations and even people is that they move to other countries where it is cheaper to live and support that country's society instead. Since most of you do not and cannot work, you need the rich people and corporations in this country to support you. In light of that, you best think about solutions that encourage them to stick around rather than solutions such as more taxes to deal with this epidemic. While I appreciate that we are talking about human beings here, the $$ issue is more about business and right now the dollars do not add. These issues (each of them) are far more complex than we can reasonably disscuss on a forum such as this.

Net is that we ALL need to stop thinking so black/white on this subject. Each of the things being suggested has potential to do some good but NONE of them are a single silver bullet. It does NOT serve us to demand continuing growth in services from the states/govt but to thwart research efforts designed to help us become better and perhaps even more abled people. It does NOT serve us to be "autistic proud" and demand neuro-diversity from society while we thwart the efforts of research designed to help us or even the research designed to eradicate the disorder entirely from future generations. It would serve all of us to support the research efforts which provides benefit for us in the form of information today. Bottom line is the more information we have, the more choices we have. We will have time later to make decisions about the "ethics" of whatever they come up with once we understand what that thing is. So YES to neurodiversity! A HUGE freak'n YES! But the same enthusiastic YES to research too. Let's all work together on this issue that is way bigger than any of us.

Yeah, sure, I know I'm just an idiot who thinks of things that can't possibly happen (even though they're already done in some other countries), despite the fact that many people with far more ability to sustain analytical skills than me (and far more ability to understand the dynamics involved in various countries) agree with my assessment of the matter as well. So might as well just totally give up on the matter, because societies never change in huge ways (even though they do, often unexpectedly), and because changes on the local level never affect things higher up (even though they do, too). Of course, I doubt that our country will even exist for as long as many people think it will, but that's a whole different matter. There are changes coming up (whether the USA survives them or not) that are bigger than have been dealt with in generations (this is my totally non-analytical ability to sense patterns talking, nothing I can describe easily, but I'm predicting more jolting change than world war 1, although possibly slow rather than fast), and when that happens, what matters is everyone trying to do their best to be as ethical as possible, not people settling for less because "it would never work". Lots of things have happened in history that people who claim "expertise" in the area have claimed would never, ever happen. And this is as far from black and white thinking as you can possibly get.

Uh.... why are you taking this personally? I never called you or inferred that you were an idiot. I said that your "ideal" world is not likely going to happen especially not as a single silver bullet. I mentioned that all the ideas had merit but none were the "one" end all be all solution. Please explain how this makes you an idiot and how I can change my wording to not be offensive...

Hard to explain, just the way you sometimes act like you think you know how the "real world" works better than other people do. My reply was partly uncalled for, I'm just frustrated by a lot of stuff lately.

Well please understand no matter how I come off that I NEVER, EVER think anything of you like that. I appreciate and respect your input even if I do not agree with it. You and I come from polar oppostie worlds and as such have sometimes completely different views. The truth is that I actually gain more from your posts than just about anyone else.

It isn't about "being right" it is about "getting it right"

Last edited by kfisherx on 31 Mar 2011, 4:06 pm, edited 1 time in total.

I'm thinking I've lost the thread of communication here. Either you are reading things into what I'm trying to say or I'm saying them poorly.



I do what research I have time for - and can actually afford. Much good research is published in journals that require a subscription. I haven't access to that.



Where did I bring Autism Speaks into my discussion? Where did I do anything but offer what might motivate anxiety regarding thing like in-vitro testing?



You seem to be equating the neuroplasticity of typical learning cycles with things more aggressive such as anti-psychotics, gene-therapy or even surgery. An important difference is that you CHOOSE the course of what you learn and CHOOSE the behavior modifications you endeavor to put in place. The control of the process and outcome is very much in your hands. But even something as promising as gene therapy has risks that you CAN'T control. Suppose that a gene therapy is developed that works on the microcolumns in the brain. This type of therapy would reconfigure the brain directly, circumventing the deliberate choices made through things such as CBT. Whatever the consequences, intended and unintended, these are fully realized and permanent. Additionally, if the differences so far found in autistics in these microcolumns turns out to be relevant, all the CBT in the world will not change that particular structural difference. Your current energies are heavily oriented towards reprogramming behavior on top of the current architecture of your brain. But the underlying architecture is still at variance with NTs. What gene therapies and some other lines of research are aiming at is to address the underlying architecture itself. This is not a trivial difference.




Absolutely. Hence my thinking we are just on different communication channels. I suspect if you and I had a few days locked in a room to hash it out we would find our views mesh pretty well.

Could you please point me to the references of these studies (or better yet the studies themselves) that are threatening to change underlying architecture of the brain itself (esp those of the already living brain)? I would be interested in seeing what is causing all the "fear" that we might not have a choice about a "cure" if one is found. All of my research into the current research on Autism (even the gene work) is really pretty intert and is only just now discovering some correlative data but nothing at all concrete.

One day I will take you up on the face to face /beers conversation. My guess is that we will have lots of similarites too.

I am rather undisciplined in recording these things. I think I will need to start a bibliography. I'm not attempting to write any academic papers so I'm lazy about it.

I also think we are talking about two different things. Current research is not directly changing the brain. But history suggests that once such things are more completely understood, someone will attempt to make those changes. So you are emphasizing what is currently being done while am considering where it might likely be going.




LOL. We should hook cables up to our heads and link to the power grid. We would light up a small city.

I am learning lots from this Clash of the Titans. Please carry on.

^^^THIS^^^ is exactly my point!

The people on this board (not JUST you) go 'round and 'round about what might happen if xyz existed based on whatever history/bias or whatever their specific life experiences can come up with. Then they go off on all these ridiculous dramatic tangents. All from a basis of crap. It reminds me of the many posts by OP where he asks questions like, "What if I have xxx disorder, will I have to live in a home?" but never actually goes to seek a professional's advice. That sort of speculation and talk is good for when we are all sitting around and drinking beers but it isn't so great for forums like this NOR does it educate/inform or help anyone. (other than to amuse us as we obsess on our ASD obsession) . For one thing the variables are limitless in those discussions and another thing is they are all just speculative. More why I avoid it though is that people of all IQ levels lurk around these sorts of threads and they read all the "speculation" and think that it comes from actual data or source when it doesn't. Then (the very worst) is they take this speculation and heresay to other posts with their stands against or for some position. How many times have you read in other posts RE this threat of a cure being "forced" on all of us walking around today?

My position is to take a "stand" only from actual data. I am always open to the possibility that my stand will change as data changes but I am certainly not going to react on anyone's speculation. So when the anti-cure folks can link me to the valid research that causes them to believe that they are going to be "forced" to take some cure that will neurologically alter them at the wiring level (per your definition), THEN I will take a stance and I will put the full force of my power, my influence and my wealth into that stance.

....just saying...

Our cables will have to be high speed fiber optic.

I still think you are reading too much into my words. Whether you like it or not, the fears and irrationality exist and must be addressed. That I am able to argue from that point of view does not mean that I embrace it. It is a quirk of mine that I think exasperates others. I always 'try on' different points of view and see how they stand up.



If people made rational decisions based on good data, this would work well. But even scientists are subject to inscrutable motives. Most of what happens in the public policy space has little resemblance to rational analysis of a problem with the intent of developing reasonable solutions. This dynamic is not an autistic phenomenon but a human one. I don't recall EVER seeing a public policy debate that was not laced with emotionalism and fallacious reasoning.



I'm not sure what type of research would demonstrate that these fears may or may not have some basis in reality. Public policy issues aren't subject to double blind experiments with controls. You could survey policy statements of various organizations. Perhaps a structured review of news articles and public speeches? How do you objectively assess these things, especially when the subjects themselves are less than objective?

Not everything is subject to hard science and decisions are often (sometime must be) made without it. So for me to rationally assess where I believe the future of autism lies, I must also consider the irrational basis of many public policy decisions in my calculus.

I think one place to look at is the deaf community. As with the autism community, there are many members of the community who are protective of their disability and don't want it taken away from them. The technology exists to take it away from at least some of them to at least some extent; cochlear implants. No adults have been forced to get cochlear implants so there is precedent for lack of force because of that. The current debate seems to be about children. Currently parents can and many have gotten cochlear implants for their children. There is much debate in the deaf community about whether this is ethical. So deaf people are your canaries in a coal mine for the subject of potential forced cure just as Downs people are for the subject of pre-natal eugenics.