Darwin and Selo discussion.

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Selo, said on another thread that I could take her post and move it to a new thread where we could restart a discussion. The thread we were posting in was becoming too long and off topic. I would like to have a civil discussion. Other people are welcome to post, but my discussion is mainly with Selo.

Selo saiiad,

Of course you are entitled to your opinion, People will listen to your opinion, and I will share mine. I am going to edit out the members names that you mentioned if you don't mind, so your post does not single them out.



Hello Selo, it is interesting that you learned about Autism Speaks from posting on this message board, because I learned about Wrong Planet from posting there. Some long time friends from Autism Speaks had been posting here for a while, and I never new it.

You wondered why many people here dislike Autism Speaks so much. I can't speak for everyone, but I can speak from personal experience. I am the number one poster there, and my viewpoints are not always well received there.

I won't say that Asperger's Syndrome "is a jolly wonderful experience full of unicorns and sugar and leaping into fields of flowers where nothing can go wrong." Having Aspergers Syndrome, or autism is challenging. Life can be challenging at times for all people. Everyone has things in life that do not come easy to them.

It is possible for anyone to bring change to the world, although its is hard to say if anyone is going to save the world. Saving the world is another conversation altogether.

First I would like to talk about the concept of a cure. Many therapies exist today. Some are good, and non invasive, others are not so good, and can hinge on abuse. I am talking about behavioral methods. Some behavioral methods being employed even involve the use of electric shock to the skin. Of course I do not agree with these types of aversive therapies. I actually don't believe in aversive methods at all. There are also many types of medications offered to autistic people. Some people claim that the help, and others do not. I personally take medication to help control anxiety. It works somewhat, but not completely. That is OK with me. A little anxiety may actually be a good thing.

Secondly, you said that you don't believe that autism/Aspergers is genetic. I am not sure why you think that. I would like to ask you this question. If autism/Asperger's is not genetic, what do you think the cause is? Autism Speaks sends give a lot of their money into genetic research. This research could eventually lead to pre-natal screening similar to the Alpha Feta Protein test, and amniocentesis used to determine if a baby could possibly have Down's syndrome, or spina bifida which results in many parents choosing to abort their fetuses. Autistics and Aspegians, have and continue to make great contributions to society, and don't want to see our number's decreased by prenatal screening.

I think the vast majority of alternative medical treatments promoted by biomed parents on Autism speaks are quackery. Alternative medical treatments are alternative, because they are not legitimate medical treatments. They have no double blind placebo studies, and are not supported by the scientific method. Some alternative treatments are downright dangerous. Others are placebo effect, and nothing more. Parents throw tons of money into these unproved, and unapproved, snake oil treatments hoping to change their children, instead of accepting them for who they are. Once you accept the challenges your child faces, you can work with them to teach them how to control some of the things that make life challenging for autistics, and Aspergian's. Every autistic trait does not need to be removed from a person. Being autistic is simply a different way of thinking. Science will inevitably find more medications that help people control undesirable symptoms for those that want them. There will not be a cure for autism.

Autism Speaks his the largest organization of it's kind that raises a lot of money, and many autistics feel that more of the money being spent should be used to help autistic adults with services, spreading awareness, and promoting acceptance. This is how I feel. There are no autistic voices on Autism Speaks board of directors, and they do not seem to want to listen to the feelings of autistics. The large majority of autistic adults I have spoken to, do not support a cure. I am sure the Pharmaceutical companies are working overtime to develop new medications to help the autistic that want them. The Pharmaceutical companies do not need the help of non-profit organizations to do this. The Autism Speaks message board is overwhelmed by parents of autistic children who want to change, or cure their children by any means necessary. The children are not given a choice. What autistics need are more people promoting acceptance, so that we can live in a society that does not judge us. For many autistics being autistic is not the problem, but society is.

Yeah, I never knew much about organizations like Autism Speak before coming here, and I didn't know a thing about AS itself either.


I can see why not. I've never been to those forums, but I should go poke around just to see what's up.


I know, and I don't think so either, but there were a few others in the other thread who seemed to think that that was the case. I won't say their names because you took the liberty of editing them out from my starting post, but there sure seemed to be a few who were acting like AS = perfection and I personally don't agree.


Yes, but again that wasn't really directed at you, but at the posters who think that having AS or not was the only thing that sets people apart; some of the "cure NTs" and "you don't appreciate neurodiversity" comments support that because there were a couple Aspies acting like AS is the only possibility of change and different thoughts in the whole world.


I think the medications most take and careful therapy or social work would be the number one way to "cure" AS - or at least to help Aspies overcome some of their shortcomings, while preserving their special talents and smarts. Of course this should be the choice of the Aspie in question, and if they do not want that kind of aid either, that's their right.


I don't believe in the mercury theory, either. It may seem odd for me to be saying this, but I really just think AS occurs at random. There are so many different statistics about Aspies that I see no geneticism behind it all. There isn't enough family AS trend for it to be genetic in my eyes; I'm the only person in my whole extended family who's even on the spectrum at all, and my relatives have sufficient proof of this spanning back centuries. And I'm only using myself as one example. There are Aspie parents with NT kids and vice-versa, and AS sure seems to pop up in families quite randomly. I've never heard of Asperger's siblings or even some great-uncle twice removed with AS whose descendants had it too. I believe AS is random, and that there is no further scientific cause.


Yes, and by "cure" I think helping Aspies with their troubles is the most likely and necessary. Again, I envision those with AS having their social and sensory issues removed but not their special talents and high IQs. Simple medication and social training seem to be the only way to manage that. My opinion on a cure is to change the problems, not the whole condition.


You're kind of tackling may things at once now, but it's human instinct to judge those who are different. It's a biological tendency from the cavemen, and I don't think Aspies will ever be completely accepted. The way people work is that different comes off as strange, and strange sends a signal as something to stay away from or show disliking towards. The reality, as much as Aspies may not like it, is that there will always be more unaccepting NTs than all autistics put together, and so the outnumbered ones will be constantly pressured to adjust. I don't see why this is so bad. I don't understand why anyone would want to be shunned and socially awkward, and if given the chance to adjust to a world where they can be accepted, they choose to turn it down. I think Aspies being accepted in an NT world is as likely as you think a cure is, unless the Aspies change themselves to be accepted.

If you two don't mind me getting in on this, I would just like to discuss this point right here.

Mine IS genetic, and this applies to many others as well, as I've come to find.

I'm the only one on the spectrum, but I've seen traits in my mom and dad, my aunt, my aunt's oldest daughter, my late grandfather, and family history says one of my ancestors (a very well-known Civil War general AND presidential candidate, by the way) had traits as well.

Two independent researchers have even discovered two genes that may be connected to the autism spectrum.

Just because it didn't show up in anyone else in your family, doesn't mean they aren't/weren't carriers.

^ I'm still not convinced that it's entirely genetic. Just think back thousands of years, to the very first autistic person ever. We don't know who he or she was, but just think: the first-ever case of an autism spectrum disorder. If he or she in question were definitely the very first, where did their AS come from? It couldn't have been genetic for this reason, so I think it at least started out as a random trait.

Selo, the following quotes are your's

We don't disagree on as many things as I expected we would Selo. Non invasive therapies are great, Positive reinforcement, redirection, and being careful not to push too hard with therapies is important. Special talents need to be recognized, and nurtured. Of course these things should always be a choice. Some parents will go to extremes, sometimes without considering the feelings of their child/children unfortunately.

Pharmaceutical companies will definitely come up with more medications. That is what they are in the business of doing. These medications are not cures though.



Many of us do have a family history of ASD's . I am very glad that you don't believe in the mercury myth. That is a relief to me, because I hate debating that one. Random mutations occur all of the time in nature. It is part of basic the evolutionary process. If the mutation does not kill you, or prevent you from reproducing, the genes are passed on to your offspring. I have lots of links and information about neurological variation, but I would rather this just be an exchange of our opinions.



See that is not the definition of a cure in many of the peoples eyes on Autism Speaks. I don't know if "removing" social or sensory issues is a very likely possibility. Social and sensory issues can be very uncomfortable. Medication helps me with social issues, Sensory issues are a little more difficult. I don't go anywhere without my sunglasses.



Of course we don't want to be shunned. We should not have to change to be accepted. Like the Gay pride movement, people need to accept others who think differently. It is important to work for acceptance. Those that judge others should focus on there own imperfections. No one is perfect.

Consider this analogy. Think of a herd of Zebra's in the Savannah. The zebras in the center of the herd are safer than the zebra's on the fringes. The zebra's on the fringes of the herd are more vulnerable to attack from lions etc. There may be advantages to be on the fringes as well. I am not the kind of zebra that has ever wanted to be in the center of the herd. Life on the fringes offers me more, in spite of it's dangers. All zebras can not be in the center of the herd. It is not possible.

One of the biggest problems faced by people who have autism or Asperger's is being shunned, and not treated equally by others. No one should have to change to be treated equally.

I think certain environmental factors come into play for certain cases, but even then, it's still genetic.

is this a deliberate My Little Pony (c) reference?

Of course you may join in the conversation Beau. I am going to focus my resposes to Selo for the most part. I have a lot to do today so my resposes ma be a bit sporadic.

cdarwin, you mentioned a random mutation as the very first cause of AS which would be passed down... I see that, but at least the root cause couldn't have been genetic, and that would have to go back further than science can take us. I still don't think it's entirely genetic because of all the autistics whose relatives are completely NT, of which there are many. Maybe some of it's that mutation and the rest is genetic, but I can't see that it would all be set in stone with genes.

EDIT:

Haha, no actually XD

Genetics seem to me to be the most likely cause. There are studies that show there are differences in the brain structure of the autistics. I consider this to be neurological variation. Do you have an theories on what might be the cause of the different brain structures. Autistics tend to have more gray matter. There are also some other neuronal differences. Neuronal plasticity, the theory of mirror neurons. I would have to provide links to explain this further and maybe we can do this later on as the thread progresses. I have read a lot on this subject but some of it is pretty technical and I am no scientist.

While there clearly is evidence of genetics playing a role in AS, it is not 100%. Some families have a genetic tendency towards heart attacks. This doesn't mean that stress, smoking, a lack of exercise, or poor diet are not also causes of heart disease.

I think of AS as a developmental disorder that can have a genetic influence. If the hormones are out of whack while an embryo develops, that will change the brain for life. There is some evidence of this in AS. There may be a genetic predisposition for some women to have their hormones whacked during pregnancy, but other factors can trigger it.

Likewise, there is some evidence for autoimmune attacks against certain types of nerve cells in AS. The genes for having an over-reactive immune system can be inherited, but it can also go beserk after exposure to certain substances.

Sickle cell anemia is a purely genetic disease. A specific mutation has been identified that completely explains the disease. If you get 2 bad genes, you don't live to be born. If you get 1 bad gene, you probably will be born, but your red blood cells are mis-shapen and you have a risk of clotting diseases. Aspergers' is not like this.

The current methods for diagnosing AS (or 'creating' a category we call AS) is based on very broad symptoms, which is a problem. There are many different ways that the development of the human brain can be interfered with, and I think it quite unlikely that there is a single gene or set of genes that cause AS. The role of 'environmental' factors cannot be discounted.

Alternative treatments are not necessarily alternative because they are not legitimate or effective. To say that 'modern' medicine has no biases is simply wrong. Today on the radio, they discussed an experiment that compared 3 cough treatments for children - the leading FDA approved over-the-counter medicine, a teaspoon of honey, and a placebo. The honey was slightly more effective than the OTC medicine (statistically, though, they were equivalent), and both of these were significantly better than placebo. Why has honey persisted in 'alternative' medicine yet remained undiscovered by mainstream medicine for so long??

Likewise, the role of diet in ASDs (and many other diseases) has been researched, and it does play a role (at least for some). Yet doctors rarely mention (let alone reccommend) dietary changes that might help (with very little potential for side effects). This is part of the bias of modern medicine. My wife has an autoimmune thyroid disease, and she specifically asked the endocrinologist if there were any dietary changes - and was told no. We came across a study that found that 30-40% of people with that disease do respond to a gluten free diet ... and she did. Her thyroid hormone levels are back to normal, her anti-thyroid antibodies are down to near normal, and it isn't because of mainstream medicine as it is commonly practiced. There were studies showing that this treatment might help, but most doctors have ideas about diseases, and may not be swayed by research that disagrees with these 'mainstream' notions. Her doctor's professional opinion was that nothing could be done until the thyroid failed, and then thyroid hormone replacement would be in order.

I'd be careful placing your bets that our buddies in pharma-land are developing drugs that are in your best interest. If the current approved drugs are any indication, you are going to be looking at more anti-psychotics that may just dull your senses to the point of listlessness. Rememeber who the 'consumers' of these drugs are...NOT the autistic adults themselves, but the parents of and the health care professionals of the autistics. Unless there is loud voice as to what types of drugs are needed, it will be the drugs that provide acquiescence for those parents and providors that will get first priority.

As I have heard several times, Autism Speaks' primary goal in life is research, if you would like to ignore that and beat your hands against the wall arguing hypothetical cure or no cure, do it at your own peril. While Pharma does not NEED non profits, they WILL watch what non-profits do, assist them with research where they see a profit in it, and help to develop drugs that the non-profits are looking for.

Just to jump in on the issue of genetics, I came across a theory ealier this year that fits this - and supports Beau's view of "carriers". There is certainly a "mutation" factor on top of that. For instance - and I have to use a recognised disease to demonstrate this I'm afraid - AIDS has mutated since it was first discovered in the 1980's. It's partly why a cure has been so hard to decipher. Conditions in general are capable of this.

Even the understanding of ASD's has "mutated". Science took a long time to catch up with the facts, even as recently as the late 1980's when Hans Asperger's work of 1944 finally started to be recognised. What were ASD's before 1893? One classification - "mad" or "eccentric" (the latter applied to the genius's behind the industrial revolution, some of whom were Aspies without a doubt). The history is there. LFA's were quickly slaughtered in the bad old days unless the church got to them first and hid them.

But back to my point about genetics - the theory I came across identifies all ASD's having a root gene. Now this gene needs to be activated. If it isn't, then you have an NT person. If it is, then the Spectrum condition varies based on the gravity of the activation. Big reaction - LFA. Small reaction - Aspergers.

And please remember, Selo - the generation ahead of you (your parents) may not be on the Spectrum but they would be carrying that gene. Their's didn't activate. Yours did. And then there are the various traits. Don't forget that one has to have a certain number of them to be an Aspie. Other members of your family may fall one trait short. But that actually supports the genetic base argument - it doesn't refute it.

The root gene also supports the claims by Aspies that we are Autistic in general. The root symptoms are the same - it's the gravity of them that is the difference (plus a few extra problems resulting from the root condition).

If I can add another voice to this, I think we are in agreement. I am old and self treated, and what worked for me was educationg myself to use my talents.

The ability to have no social life and spend months in books worked. The University did not meet my need, which is to get up to date in a subject, that I may never work in, but want the information.

By hours for a Major, a few months can cover the same ground.

So to me self education using my skills came first. It is what made me employable.

I still cannot discuss sports. I could learn, but not for useless chit chat to no purpose, except to "Fit In."

It did take me a long time to learn some things that middle school kids know.

The problem I see is no one ever wrote a book about what everyone knows.

It could be simple, and if Autistics were given the right information, at the right age, well, we are not dumb, just oblivious.

So the social/occupational,physical,/speach, therapy would work.

Most problems I see come from the gap, in my life I was spoken to a lot less than other children, because something was wrong with me, and they never discussed what, even when I was an adult. It is hard to learn from a black hole, and it does produce stress, which becomes anxity, depression, anger, and isolation. It is hard to grow up when no one speaks to you, no one tells you how the other children are different.

A lot of my problem with life could be solved with an interactive CD. We may not get the model natuarlly, but we are great learners.

When I got away, spent my 18 to 23 years with my age group, I quickly blended in for they were now learning not from within, but from the world around them, and I was good at that.

I could function in the world, but my natural disposition lead to seeking jobs working alone on the night shift, with technology. Such jobs existed, and I was not the only one who chose such work.

My family had a high number of small business owners, for they were just not cut out for being employees, and they made a better living. The ways to adapt have been around for generations.

Fitting our less than 1% into the world has never been a problem. When I asked about the spread, all ASD, who was functional, who was not, I was told England found 75% to 95% Aspies, out of all ASDs. That would fit with what I have seen.

Most of us can do well with a little early training. Many an Autie has suddenly turned Aspie, so training might help us all.

Smelena, here with her two boys, was at wits end less than a year ago, but discovering the cause, she went to work and things are much better now. Identify problem, deal with it, works. Three years ago it would have worked even better. I offer this as evidence we are not dealing with a monster, only a small problem when addressed.

As for the genetic, well my family is , has been, and did well. Others report the same in their family.

It is a recessive, no telling where such will pop up. It seems to come from having European ancestors.

The Human Genome Project has studied them, and traces them, most all, 95%, back to a small very closely related group of less than a hundred, that lived 32,000 to 35,000 years ago. There are mutations from that time, which was also the time of the Vela-X Supernova, which was close, and bombarded the planet with some powerful mutagenic rays.

This group was said to be much closer than sister brother, sharing the same parents, grandparents, for many generations back. So if it existed then, it is everywhere, and only needs to cross the right blood lines, and there you are.

It is a variation within a normal range. The other end would be someone very social, yet dumb, near incapable of learning, but everyone likes them. They are socially gifted.

I disagree with the direstion of research, seeking where it does no good, and I doubt it ever could.

Prenatal screening and abortion would take us all. I would rather be alive, and our contrabutions to life far out weigh our social cost.

The treatments being used, drugs on children, electroshock, seem to be doing more harm than good, compared to my generation who grew up being ignored. If the money was going for rehabilitation, training, I would support it. They seem set on cleaning up the gene pool, and that is not a good idea.

I am speaking of ASDs, there are other things wandering about, some comorbids caused by the reaction ASD people get, and some are just another problem, that happens to also show up, we are subject to the same medical and psychicatric problems as the general population, in the same amounts.

Next, the ASD Dx is so broad, that no one has it all. I do not see groups on WP, types, or even a pair.

Just the AS Dx seems to be 6,853%, and from that we each get 100%, and no two the same. This is some pretty iffy science to go around exterminating people over.

However we have come to exist, we do some good, and often excel, creating new fields of knowledge. I started in computers in 1963, and it was a strange lot of people who made them run, the word geek was unknown, but we were, and on through the 1990s, it was the self educated that drove the industry.

Self educating lifetime learners is what I see. I do relate to Tesla, I do hold patents on new knowledge, write books, and am socially isolsted, but still contributing to the world.

The other people I know who are my age are also socially isolated, and NT. Most of life we have very few friends, and judging everything from a middle school social view does not cover life.

I would think that some social skills training would help, but for what we can do for the world, we must develp our skills, for no one else can see or understand them, till the products come out.

Most Inventors are serial inventors. Once they reach the edge of knowledge, they can see where it is going, and file more. It does give rights, but it also shows what is possible. They are teaching the future. Everything is easy, once someone shows you the trick.

So my view is ASD is a goldmine, a natural think tank, and we can combine and prosper.

Autisum Speaks does not seem to share my view.

Hey my friend, how's it going, maybe our buddies in pharma-land are developing drugs that will be more acceptable and user friendly for people on the spectrum. There may be more designer anti-psychotics developed. They might be better than the current anti-psychotics on the market. There are also be more designer anti-anxiety medications and benzo's that are developed with autistics in mind. There certainly will be a market for them.

I don't think that there will be cure. How are they going to rewire the brain, or change the structure of the brain. That raises the ethical question as well of whether something like that should be done as well. Autism speaks primary goal is research, you are right. I am afraid of what that research will lead to. I do not wish to rid the world of autistics. I know some people struggle with the difficulties. There may well be drugs that help autistic people deal with sensory issues, and social anxiety that are much better than what we have today. I bigger problem that needs to be addressed is will society learn to accept autistics. Why should autistics have to adjust to society when society just needs to learn that autistics are here to stay. Many autistics like who they are and are quite comfortable with themselves. Unfortunately they are often discriminated against, bullied, ostracized, and made to feel less human by those wishing to cure or change them. Autistics have so much to offer society given the opportunities and encouragement. There are many fields that autistic people thrive in, but but there NT counterparts are chosen for jobs due to the lack of understanding and the prejudice that exists today. What we need is society to have a better understanding of the abilities that autistics have to offer.

Sorry, my friend that I did not come back over to have that moralistic debate with you regarding treatments. I would like to. Maybe we could still do that. We can have a (LP's vs Darwin moral debate) thread. I am afraid if I do it there, people will derail my thread with youtube video's of baseball, or sesame street. LOL It's good to hear from you. It must be pretty boring there without me huh?

Last edited by cdarwin on 26 Dec 2007, 5:40 pm, edited 1 time in total.