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autism_diva
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26 Dec 2007, 5:30 pm

Selo wrote:
^ 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.


There are probably a dozen or more different genes and almost none of them are sufficient to cause autism if the person has only one of them. It's a complex genetic cause. The way genes act and interact with each other is super complex, it's not like most people think that they are more or less a simple set of instructions that can go right or wrong.

A parent with no autism can easily gain a mutation in his or her egg or sperm cells and pass on one of these genes associated with autism to their kids. In some cases, the mutation starts in the egg and sperm that made the grandparent who is unaffected or mostly unaffected, then the offspring of that person is more affected and the grandchild has the obvious autism. It's how it works in Fragile X, and it has been found to be in other autistic children, particularly those with older grandmothers (grandmother was older when she had the child's mother).

So no, the first autistic person didn't need to become autistic because of being poisoned as a child or in the womb. Probably every person on earth has at least one of the autism "susceptibility" genes. The parents are frequently, but not always slightly autistic or have a mental illness like bipolar, depression, or OCD. They frequently are not very good at socializing. The parents who are really normal are probably the ones who have this suddenly acquired mutation that caused their child's autism.

Also, it's possible that a virus can cause autism if the baby is exposed in utero. I don't think that kind of autism would be able to be passed on, though I don't know because of epigenetics, it might be.

I have two kids, they both have the same father who is on the spectrum. One of my kids is typcial and one has an ASD. I would expect that maybe my typical kid is a "carrier" for some of the genes associated with autism though I don't know if that's the case.



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26 Dec 2007, 5:37 pm

monty wrote:
beau99 wrote:
I think certain environmental factors come into play for certain cases, but even then, it's still genetic.


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.


Small point about sickle cell. If you have one sickle cell gene you are mostly fine and you have an advantage in not getting sick from malaria (and dying). If you have two of the sickle cell genes you have the disease, but you can be more or less affected by it (dying young or living a long time).

There are genes that are fatal if babies get a double dose, but if I understand it correctly, those are usually ones where the baby doesn't get much past the embryo stage because it can not live even an embryo. This would explain the dearth of boys/males with Rett syndrome. There are males with the MECP2 mutation. I'm not sure if they all have an extra X (they are XXY) or if there is also another explanation for why some boys survive with Rett.



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26 Dec 2007, 5:53 pm

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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.


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.


Hi Livsparents,

I hope you stay around. I think the environment here is more conducive to this kind of conversation than over THERE (she makes a sour face in the direction of AS board). :)

I don't think you'll see people derailing threads as game here. Though topic drift is the norm among most ASD conversations,... hey! How's the weather where you are???

And I don't think I found anything in what you posted to disagree with, which I think means one of us is slipping. Except that I'd add that autistic adults would be the "consumers" in the sense that they take the medicine, if their caregivers give it to them... but I know that you meant "consumers" as in "the ones who read the advertisements for Zyprestochanjo in Oprah magazine", etc.

I still am shocked when parents demand, and I do mean "demand" that "medicine" meaning big pharma, give them a medical cure for autism. Not an educational "cure" but one that comes in a pill. I had this one guy come to my blog and get all huffy (no not you) about how medicine had failed parents because they didn't have a good pill for autism, only bad pills.

Half the big fuss over "biomed" is coming from parents who got the dx of their kid, went to the doctor and said, "so give me the pill the cures autism" they were told, "we don't have one." And the parents said, fine, then, I'll go to the people who DO have that pill. And there are the DAN! quacks ready to take their money. Everyone's happy as a clam (except for the kid who has to choke down dozens of pills a day, literally) until a kid or two gets killed or sent to the hospital with damage from the treatment they get.

Do parents of Down Syndrome and Williams syndrome kids go to the doctor and demand a pill to cure their kid? I don't think so.

Though parents of Frag X kids might be doing that soon enough. I hope that the side effects of that pill doesn't hurt the people who take it.



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26 Dec 2007, 5:55 pm

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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-pychotics 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 think you grossly overestimate the 'market' for these drugs. At the very least, you overestimate the influence of a small unorganized group asking for a drug vs a large and very organized non profit actively lobbying government and private interests with their own agenda. It would be nice, but not likely that they will focus on helping with an autistic's view of what is wrong, but instead with the caregiver's viewpoint of what needs 'fixing'.
Until you can convince the non-profits and the people backing them that there is something that ain't broke as well something that needs to be fixed, you are going to get the NT view of the drug.

One must first agree on what needs to be fixed before others can go about figuring out how to fix it...



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26 Dec 2007, 6:01 pm

I'm not lookin' to fight, I just want to have a good argument! :wink:

Yes, 'target market' is the term I shoulda used...



autism_diva
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26 Dec 2007, 6:05 pm

livsparents wrote:
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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-pychotics 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 think you grossly overestimate the 'market' for these drugs. At the very least, you overestimate the influence of a small unorganized group asking for a drug vs a large and very organized non profit actively lobbying government and private interests with their own agenda. It would be nice, but not likely that they will focus on helping with an autistic's view of what is wrong, but instead with the caregiver's viewpoint of what needs 'fixing'.
Until you can convince the non-profits and the people backing them that there is something that ain't broke as well something that needs to be fixed, you are going to get the NT view of the drug.

One must first agree on what needs to be fixed before others can go about figuring out how to fix it...


People who have some kind of dream of a pill that will "fix" autism, like they seem to be trying out with Frag X now, will not get that by trying random pills on autistic kids (which is kind of what they are doing now). IF they did find something that worked on a few kids (the way the one is putatively working/going tot work in Frag X) is by looking at the genes that are different in autism and then looking at what those genes "code for".

If there is something that can be "replaced" because a gene is not "working right" and is slacking off in the the production of ...... whatever.... then one might be able to supply the missing stuff... and still they could do a lot of damage this way, but there is a kind of logic to it.

I think the vast majority of autistic kids aren't going to have an intervention that is available to their parents after dx. I sure don't think there's an intervention a teen or adult could do to budge their ASD symptoms even an inch. They can submerge and subvert them, but they don't go away. I think people fool themselves at times into thinking that they have "mastered" their AS. I don' think they can really, they can just do what Tourette people do, get more sophisticated at hiding he symptoms and avoiding places where they can not hide their symptoms.

If parents want to avoid an ASD kid they could encourage everyone around them and way beyond to get a flu shot, for intstance. That might prevent autism in some cases... maybe... like the way they can prevent autism with rubella vaccine now...

see you can't say this stuff, even though it's true on the AS board because the harpies derail every conversation that they choose to derail and this would be one of them. :D


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autism_diva
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26 Dec 2007, 6:06 pm

livsparents wrote:
I'm not lookin' to fight, I just want to have a good argument! :wink:

Yes, 'target market' is the term I shoulda used...


I'm usually up for a good biomed argument. :D That's news to you, right?


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26 Dec 2007, 6:06 pm

Selo wrote:
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.


There's a few responses I'd like to make just to this point.

Genetic is not the same thing as inherited, nor is it the same thing as always-inherited. Genetics is a pretty complicated science and I don't know all the technical terms for this. But I know that there are recessive genes that skip many generations.

Also, there are spontaneous mutations. Down's syndrome is a good example of something that is genetic and is usually a spontaneous mutation. Not all children of parents with Down's have Down's themselves, and most people with Down's have parents without it. There is talk about some sorts of autism being spontaneous mutations.

The diagnosis of Asperger's has only existed for a little over ten years now. People in previous generations did not have the option of being diagnosed. There are and were also cultures where it still is not considered outside the realm of normal, which can be wider in some cultures than others -- it might be considered a little odd but not medically abnormal (before anyone says something about this meaning only "mild cases", there are parts of my family that seem to have believed this of people with some pretty extreme conditions of several sorts including autism-related ones). It's not going to immediately show up in a long family history as "someone with a medical condition". I am also interested in the going back hundreds of years part, because while some of my relatives have traced genealogy back that far, they do not have records of the exact personality and abilities of people beyond about 100 to 150 years, and not even of everyone that far.

Autism is I think proven to be sometimes genetic, but sometimes also definitely not, they just have not found all the possible causes. For instance, the mother having rubella while pregnant is a non-genetic cause, while the higher rate of identical twins having it (but fraternal twins a much lower rate) points to a very frequent genetic cause.


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26 Dec 2007, 6:31 pm

Selo wrote:
^ 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.

Um... that's not quite how genetics works. Here's an example: having blue eyes is genetic- this is well known, and researchers can even find the specific gene that causes blue eyes instead of brown. But there was a first person to have blue eyes when most people before had brown eyes. Where did their blue eyes come from? Random mutation, the original source of all genetic diversity. By your reasoning, there could never have been... well, anything. If no individual could ever exhibit a novel trait, the world would still be populated entirely by prokaryotes.


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26 Dec 2007, 7:43 pm

Inventor said something that I found very interesting. Besides that, I love theories like this one.

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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.


I like everything that Inventor said in his post on this thread. In fact he always seems to have some amazing posts. I am definitely going to do some research on the Vela-X Supernova. I really like astronomy. His theory is very interesting indeed.


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26 Dec 2007, 8:03 pm

Wow! Like I'm a SuperNova Child...


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26 Dec 2007, 10:33 pm

So cdarwin, livsparents, and autism_diva are recently relocated from this other forum?

I find your comments intelligent, and within the laws of science. May free speech prevail here.

I agree that drugs could help, just not what is being used recently. For one, too much varaity in symptoms. In each trait we show a range, and I doubt we will get one trait drugs soon. Even then, shutting down what causes one thing, may also shut down several useful things.

Of the 2,000,000 in the US, most are older and know nothing, I discovered at 60. So a wide spread of symtoms, and a small market, 100,000 to 200,000 is not going to produce much research for a targeted, if possible, drug. There is some government funding to produce drugs for orphan diseases, where there are perhaps thousands of suffers, but that is for production of drugs with known effects for that condition, when even making one batch could cost $100 a pill. The intent being making known medicine available at reasonable cost.

Autism is much more complex, and treatment is not open and shut.

For the cost of researching and trying to produce drugs for a market of 10,000, it will never pay.

I know people demand something, but reality gets in the way. Massive doses of Thorazine will cure everything.

I have mentioned the effects of isolation, and there is ouinon's threads about schools, and the imprinting that goes on. It is a new system, and it does match the rise of autism. Children are being segregated from life during an important world view forming time. We may be inducing our own cultural problems. I can see the mind shutting down over a lack of critical input.

Then there is the role of viruses, stresses upon the mother, a lot more than the Scientific Method of testing one varaiable at a time can cover. Even leaving out food, allergys, metals, vaccines, it is still more than can be dealt with in a Scientific manner.

The cause will likely remain a mystery, but some good results have come from treating symtoms, through social and occupational help, and there treatments are directed at one trait at a time, and taking each from where they are, and moving them toward where they want to be.

More on the Vela-X, it was an interesting time. After five million years of sticks, rocks, and fire, comes a time called The Human Explosion, in Anthropology. In what seems a generation, there is a wave of invention, and sleds, boats, nets, skis, snow shoes, tailored cloths, shoes, the spear thrower, the first drawing, and the first sculpture in the round. There is a line drawing showing a man, and in just the right place, he has a shirt pocket. These are the first modern humans, and the culture lasted. The body, modern human, had been around for 90,000 years, doing nothing much.

Culture starts with a bang. Genetics shows the grains, and domestic animals, also start in that period. Indo-European Language comes from the same time and place. Before then small moving groups of ten or twelve hunter/gathers were normal. After that we find camps where hundreds lived a more settled, if seasonal life. The record is scanty, but a few thousand years later one camp shows seven weaves of cloth, including my favorite, herringbone tweed.

So the whole group shows traits much different than all that went before, and we are living in the continuation of their culture. I can see a lot of AS traits in what they did.

This is the subject of my book, I knew what they did did, but it was much harder to build a model of how. Each act took steps before that, the parts were made, then joined in new ways. As the book is being finished it will be published chapter at a time as a comic/manga. What started as a scientific study of the history of invention, has become more fun.

I find the current era, the Internet, Graphic Novel, CD/DVD, Digital Art, Animation, to be another watershed event in history. The last decade has transformed the way we learn, communicate, and the media we use. The small population of Aspies are well represented in all of those new fields.

For the over forty set, discovering first AS, then WP, is the shock of a lifetime. We formed alone and weird, and now we have a planet of people who make sense. It does not go away, but you do learn to cope. Many of us coped well, and with our focus and hard work, have skills and market position.

The outcome is not bad, it is just a rough road to get there.



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26 Dec 2007, 11:16 pm

Inventor wrote:
So cdarwin, livsparents, and autism_diva are recently relocated from this other forum?

I find your comments intelligent, and within the laws of science. May free speech prevail here.

....


Actually I knew livsparents first from reading his stuff on "autism_web" which is a very "pro-biomed" forum. Then livsparents stalked me over to the Autism Speaks board (kidding) and then c.darwin showed up, and we've been exchanging comments there for quite a while. livsparents and I take turns disliking and liking each other. :)

I knew of little bo peep from the autism-web forum, too, and then she was on the AS board, not sure if she stalked livsparents (actually it's just liv's father if I'm not mistaken) or if he stalked her over to the AS board...

I've been on different "Aspie" internet bulletin boards for a while before I started blogging about biomed and advocacy issues.


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26 Dec 2007, 11:36 pm

I actually have no true claim to be here. I have a 5 year old autistic girl and a 3 year old who is/may be PDD. I myself, I'm probably not AS, just a little geeky/antisocial. I just hope I can give you a more unbiased view of biomed therapies, and give you the disturbed view of a parent on the edge. I hope I can get a view from you of what my girls are going through, maybe see what they may face in next 10-60 years.

So tell me how I can advocate for you and I'll hopefully make you laugh and think...



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27 Dec 2007, 1:20 am

Well, this is an interesting thread. I'm glad to read it, and Inventor, as usual, you always have interesting things to offer.

I'm also an older Aspie who was originally diagnosed as something else. I am also about to foster my sister's son, who is also Aspie. I come from a family full of them. I definitely have an inheritable strain of AS.

Hi, AutismDiva--I follow your blog, and it's nice to see you here.

Metta, Rjaye



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27 Dec 2007, 3:29 am

Rjaye wrote:
Well, this is an interesting thread. I'm glad to read it, and Inventor, as usual, you always have interesting things to offer.

I'm also an older Aspie who was originally diagnosed as something else. I am also about to foster my sister's son, who is also Aspie. I come from a family full of them. I definitely have an inheritable strain of AS.

Hi, AutismDiva--I follow your blog, and it's nice to see you here.

Metta, Rjaye


Hi, Rjaye. Thank you. :)


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