The Age of Autism: The Amish anomaly

Lancaster, PA, Apr. 18 (UPI) -- Part 1 of 2. Where are the autistic Amish? Here in Lancaster County, heart of Pennsylvania Dutch country, there should be well over 100 with some form of the disorder. I have come here to find them, but so far my mission has failed, and the very few I have identified raise some very interesting questions about some widely held views on autism. The mainstream scientific consensus says autism is a complex genetic disorder, one that has been around for millennia at roughly the same prevalence. That prevalence is now considered to be 1 in every 166 children born in the United States. Applying that model to Lancaster County, there ought to be 130 Amish men, women and children here with Autism Spectrum Disorder. Well over 100, in rough terms. Typically, half would harbor milder variants such as Asperger's Disorder or the catch-all Pervasive Development Disorder, Not Otherwise Specified -- PDD-NOS for short. So let's drop those from our calculation, even though "mild" is a relative term when it comes to autism. That means upwards of 50 Amish people of all ages should be living in Lancaster County with full-syndrome autism, the "classic autism"...

I have identified three Amish residents of Lancaster County who apparently have full-syndrome autism, all of them children. A local woman told me there is one classroom with about 30 "special-needs" Amish children. In that classroom, there is one autistic Amish child. Another autistic Amish child does not go to school. The third is that woman's pre-school-age daughter. If there were more, she said, she would know it. What I learned about those children is the subject of the next column.

That's 2,800 children who may get so frustrated at their inability to communicate that they punch themselves in the face or bang their heads against a wall. The demand for services has outpaced the supply of therapists as parents waste critical months on a waiting list just to get diagnosed.

Couple that with the description the grandmother gave of her wonderful, loving, sweet delightful grandson (above on this page) -- and it's TRUE because that's true of our son, as well -- and you begin to get a picture of the agony families are faced with. After years of being able to avoid doing temporary emergency 72-hour holds with our son, the last time he lived at home with us we had to do THREE, and have recently learned that the county psych ER facility has had a murder there of one inpatient by another -- someone who arguably shouldn't have even been in there -- that is the chilling specter that starts to materialize in the minds of every couple when they learn that their BEAUTIFUL child has autism. Then you spend years trying every reasonable therapy that comes along (oh, for us, none of which was "approved" by the AMA/FDA, nor did our insurance pay for them -- but most of them helped significantly) and have to give up (somewhat) before you're ready because they've gotten too big to have at home anymore (right now, for us, even for visits...(:<) but you keep looking, hoping and trying for something that improves him, because that's your calling now.

And the problem IS growing and it's not genetic, per se -- and I've been predicting this epidemic for years based on the growing incidence of Pitocin-induced deliveries with an agent that has been off-list for that use by the FDA since one year after our son was born that even the puppy breeders will no longer use because it devastates their profits because people are too smart to buy damaged puppies from them.

Multiply the Missouri numbers by 50, and these are the statistics I predicted without using any numbers 24 years ago, as soon as I diagnosed our son and figured out how it happened; thank you over and over for posting them.

Actually, I was making fun of the lady who was generalizing from the lack of autism in her family. I'm a physicist.

I thought of making fun of her, too, but I managed to resist that. It's too easy if you're educated AND have the credentials to "back it up" to ridicule people who aren't (initially at least) articulating their case well. I've had occasion to talk to some very well-recognized people in my search for help for my son in this field and related ones, usually over the phone rather than in person - it's amazing how accessible these people are -- and I have consistently found them to be humble, unassuming and genuinely responsive to my (sometimes perhaps ignorant-sounding) thoughts and theories. The people to whom I'm referring include (if memory serves -- some of this dates back to 24 years ago) Konrad Lorenz, Bernard Rimland, and Temple Grandin. I'm not touting that as a substitute for credentials; I just wanted to talk to the best in their fields. Lorenz is a recognized authority and has written on bonding and aggression (in geese); Rimland is one of the original researchers in autism growing out of his role as an autistic parent (he traces his son's autism to over-oxygenation at birth causing brain injury from rebound vasoconstriction) (I was the first person who ever made the Pitocin connection for him, and later he had the British Lancet 6/91 article in his newsletter), now head of the group Autism Research Institute and (I think) Defeat Autism Now; Temple Grandin is a famous autistic, inventor and author (she responded to my Pitocin theory with the story about the acquired autism from a dune buggy injury) I remain convinced that I am the first person to ever put Pitocin and autism together, and Dr. Pangsepp, who has been proving out the oxytocin aspect of autism, works with Dr. Rimland. We were co-speakers with Dr. Pangsepp for Sensory Integration International in San Diego in June of 1995; we were just speaking as parents and only incidentally learned, over coffee in the break room, about his research before he gave his talk. We were flooded with inquiries after the session where we spoke; the most memorable one was a female OB doctor who practiced at the same hospital where our first son was born and was flabbergasted at the idea that Pitocin might be doing the level of harm we were seeing in our fourth son and did not want to believe it; she must have been a remarkable doctor, bottom line, to have even been in attendance at a sensory integration conference.

Are you finding your background in physics applicable to things you are reading relative to autism and microbiology? There is a tremendous application there, I'm sure. (See my posting to the person who was ridiculing the concept of fluoride problems; as you know, they're in the same vertical column on the Table of the Elements, and natural health people have given a lot of attention to the displacement of iodine in the body by fluoride added to our water.) The role of mercury in autism, causative or opportunistic, should intrigue you.

"It's termed an "off-list" use." What does that mean? You can use it for puppies but not humans?

It actually means that you can use it without (automatic) liability. I doubt the two industries work off the same liabilities lists; it could well be that it is now illegal for use in animals -- it wouldn't surprise me if it became illegal for use in animals before it became illegal for use in humans.

It was doubtless developed to replace Stilbestrol in clamping down the uterus after birth because of the eventual problems that arose from using Stilbestrol to prevent premature labor and which ultimately was causing cancer in the adult daughters of those pregnancies (at least); I believe it's been replaced by a dose of Pitocin instead. I believe that evolved into using Pitocin to stimulate (and control) labor at a level higher than is good for the baby, and I think (like levels of mercury in the body) there may be no safe level when baby's still on board. I can tell you from two experiences with it that it makes for a very hard labor depending on the dosage (by drip, constantly variable) and that I saw oddities with both those babies during their growing up years. Even in the VERY highly functioning child we saw the inability to connect cause-and-effect in ideation that seemed normal in our two non-Pitocin-influenced children; that seemed to mitigate nicely with age, thank God. But that inability to connect cause and effect is almost central to autism, so I really do see that child as having been a "closet autistic" who gradually (but dramatically) improved over time.

I'm really not interested in your opinions about autism if you have no direct vested interest in it because it's been a burden in your own personal life.

Yes my logic IS based in reality, it's your EMOTIONS that are deliberately ignoring reality. The reality is that there is not one single shred of usable evidence that ANY vaccine haS EVER had the SLIGHTEST relation to autism. It's a genetic problem, and it's highly unfortunate, and I understand why people want to blame something but they shouldn't be blaming vaccines because it's not the vaccines' fault.

Discostu is accusing Orgiveme of being emotional. Orgiveme has an autistic child who is 28 now, and has been actively looking for answers to that since he was 4, has never blamed vaccines in his situation but believes mercury at any dosage could be a bad thing (see the Minimata cases), and you, Discostu, still have not answered a simple question also asked in the posting you responded to:

What is your personal vested interested in autism? You have not answered that question.

And your posting is quite emotional, actually, but your emotions have only to do, apparently, with your own ego; my emotion comes from 24 years of dedication to solving my son's problem and preventing other children from having the same problems in the future. I'd sincerely like to know what you've been doing with your time, energy, money -- and, yes, emotions -- that compares.

Yes you are being emotional you're in a tough spot in life but that happens. That's a very fuzzy statement, a lot of things in any dose "could be" a bad thing, but there's never been a reputable study that links vaccines, with or without the trace elements of mercury found in thimerosol, to autism.

And I'm not going to answer the question because it's nothing more than an attempt to create the logical fallacy of poisoning the well. Nothing about being related to an autistic kid makes one more or less able to read and understand the studies.

My posting is completely unemotional and 100% logic based, I have no ego tied to the situation I don't work in the pharmacuetical industry and nothing about the discussion will alter my life in the slightest. I just like to apply simple logic to discussions. unfortunately if you're trying to block vaccines you're not doing anything to prevent autism and are doing something to prevent healthy children in the future by re-introducing ailments we once thought of as conquered. I devote my time and energy to logic and thinking through the actual consequences of actions, but not my emotions because that would get in the way of logic.

I'm sorry your son is retarded and has aspergers. Why don't you ask the experts you are working with regarding Aspergers if they commonly see that a son with aspergers often has a father with aspergers. It is not an inevitablity, but since it is seen in families, that would make it genetic.

Unfortunately, I'm the expert on Asperger's I'm working with. That's unfortunate because I'm not really expert on anyone but my son and there aren't very many people out there who are any more qualified than I am.

I agree with you on the incidence of the father-son connection; I think I see it here in our family and I have seen it in other families, as well. Having said that, I see it as a genetic predisposition rather than a defect; the morbidity (a disorder, per se) comes in when there is a particular type of insult (I believe birth trauma, hypoxia, toxic impact of Pitocin and mercury and probably other things, as well -- remember the Foster sunglass cases where the plant contaminants affected the NEXT generation?)

The Stanford study of families with more than one member concluded that there is a genetic weakness rather than a defect per se. I think they're right about that. The doctor there who (finally) graced us with a certified diagnosis of autism (eight required out of a possible sixteen items, and we met eight) indicated that she thought the Pitocin was showing signs on research of causing an auto-immune reaction by the brain; that is what Dr. Pangsepp's research is supporting, also.

But if those genes are on the X chromosome, OR if their expression is regulated by other genes which are on the X chromosome (i.e. particular hormones or proteins whose correct chemical structure or correct levels depends in part on something located on the X chromosome), that would still explain the disproportionate number of boys affected.

I can't tell you how grateful I am for your input on this. I am forced to learn some of this stuff incidentally as I go along, and this kind of input is so helpful. I think I remember something from the Stanford study that sounds redolent of what you're sharing, but I can't remember what it was.

Did you know that there is a "true" genetic autism that is X-linked? It's called "fragile X," and the one child I know with that condition is a male. The mother was in her late 30s when she had him (lost his twin just before delivery) and had been a patient in an infertility clinic. Her personality reminded me tremendously of my mother-in-law, who I also suspect of carrying the weakness; she is related to the NASA fluid dynamics engineer. My engineer-type husband, who has the visible form of her invisible retinal condition that one of our sons (non-autistic) also has -- known in the past as "lazy eye" -- has theorized that there is something genetic in the brain's mapping common to that condition and the autistic weakness gene(s), and I believe that to be true because over and over I have found that there is concomitant lazy eye in non-autistic members of families with autistics. I don't know what to make of it; I just sense there is a connection.

Again, thanks so much!

Nothing about being related to an autistic kid makes one more or less able to read and understand the studies.

I disagree.

Having a vested interest in finding a solution makes you more (not less) likely to look more at the background of the studies, who's doing them, what their incentive is, etc., instead of just looking at the numbers on their face.

Having a vested interest in finding a solution makes you more (not less) likely to resist succumbing to the (albeit comfortable) predisposition to accept, with blind faith, everything your doctor tells you.

Someone who can actually look at the situation logically is, actually, all many of us are hoping for. To date, we have been disappointed. The fact that you only seem to recognize drug company and AMA studies as "reputable", without taking into consideration what they would potentially face if their studies told a different outcome, tells me everything I need to know about your "unemotional and 100% logic based" stance.

unfortunately if you're trying to block vaccines you're not doing anything to prevent autism and are doing something to prevent healthy children in the future by re-introducing ailments we once thought of as conquered.

This, of course, is the ultimate argument of those people who profess to being 100% logical. The "all or nothing" defense.

Logic would actually dictate that what we're really trying to do is to make vaccines safe for everyone. Not just the (declining) ratio of 265 out of 266 people. Logic would also dictate that, sense we are more or less covered by the "herd immunity" concept, this is a PERFECT time to figure out what's wrong with the vaccines, and FIX THEM!

Perhaps I shouldn't have made fun, but the statement was too much for me to resist. You seem like you have the curiousity and analytical to have been a good scientist if you'd gone that route. I'm sorry about the problem with your son, (those with fully healthy children don't know how lucky they are) and admire the way you've made autism a mission. My training is useful in that it has allowed me to think properly, but has little direct subject-matter relevance.

BTW, my second wife was given Pitocin during the birth of our second child and nearly had a fatal heart attack. The resulting daughter turned out well enough.

And I'm not going to answer the question because it's nothing more than an attempt to create the logical fallacy of poisoning the well. Nothing about being related to an autistic kid makes one more or less able to read and understand the studies.

I disagree with your accusation and your premise. I meant what I said: not interested in your input. It meets with your logic but you are not personally vested in finding answers to the need for immunization that avoids causing problems that are as bad or worse for a significant and growing number of the population.

You either are in denial about a personal investment or you really are not personally invested; I believe that skews your perception. I am sincerely sorry for what is either your lack of emotional investment or your denial of the same and your inability to see how that might influence your perceptions. Your posting was neither logical nor was it unemotional. I think you have issues around those two things.

Thanks for your sentiment (such as it was) but I'm quite at peace with my role in life. It is tough, but it's tougher for our son and that's of more concern to me. I am also of the impression that you have not read through the entire thread, which I am in the process of doing; otherwise, you would have noted that my focus has been on Pitocin as the cause of our son's damage rather than (in our case) mercury from vaccinations. You would have also realized that my "goal" is not elimination of immunization, per se, but that I keep encouraging people to look at homeopathic nosodes as a vehicle of immunization instead of inoculation with massive doses of (sometimes mercury-laden) vaccines with foreign proteins that can cause the body to shut down its own immune system, leading to other problems including auto-immune reactions.

I've got 24 years on you, a personal investment in a solution you apparently don't have, and a wealth of experience and input from people who are simply more open-minded, more invested in the problem, and more questioning of the status quo than you are. You can deny an emotional investment in the status quo all you want, but your postings don't support that. You offer no logic anywhere that I can see but center primarily on personal attacks about my "emotions" and "lack of logic." If you read the entire thread and do so with an open mind, you'll learn a lot and your "arguments" will be more worthy of that name.

Please don't bother to answer if it's just more of the same.

You seem like you have the curiousity and analytical to have been a good scientist if you'd gone that route. I'm sorry about the problem with your son, (those with fully healthy children don't know how lucky they are) and admire the way you've made autism a mission. My training is useful in that it has allowed me to think properly, but has little direct subject-matter relevance.

I had a doctor friend tell me once I could have been a doctor -- I replied, "Or a lawyer" -- "Or both," was his next statement. I have always treasured that. I had another friend tell me that he knew a Bechtel engineer that was at about my level and the smartest person he knew. I am "only" a wife and a mother (of four sons) but I consider that to be a very high calling. As it turns out my mother was the computer programmer at USNSCC/Oakland back when the computer took up the whole room -- and she was UNTRAINED and "uneducated." She had also worked on ballistics stuff during WWII. My adoptive dad, interestingly enough, was the implementor of the hermetically-sealed building to house that same computer. This was unbeknownst to both of them, apparently. He was also "unqualified," but went on to become the first paid National VP for the biggest civil service union in the country and single-handedly ended RIF (reduction in force) practices in the civil service that kept people from advancing in seniority and accruing a pension. That was before he knew there was a union to join.

I continue to do informal research on a lot of health issues for my elderly dad and myself and my husband and our autistic son, and I keep the rest of my friends and family abreast on what I'm learning. There appears to be some real hope for autistics in hyperbaric oxygen combined with vasodilation medications/supplements, as well as glyconutrient therapy (see www.gordonresearch.com) and we will be exploring those things for our son. I always share everything I'm learning about any topic with anyone who will listen; I think that's just in my nature.

I think a recent challenging poster (see just above) needs to consider the last thing in your quote up above, though I don't really believe he/she exhibits the training in thinking you demonstrate. It DOES make a difference if you have a vested interest in a topic; it always worked for me in English Composition! I can't claim having been trained in Logic -- my husband and kids do twit me about that sometimes -- but I have a little exposure to it and I think I would like the discipline. My hat's off to you for your training! I hope you will find something that is very worthy to apply it to! You've certainly given me a nice compliment that I will treasure.

Congrats on your healthy daughter and I hope your wife is okay now!

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