It’s Not Something You’re Simply Born With

Oh Autism Speaks, how you annoy me so. I haven’t seen you in my news feed for awhile but today you have graced me with your presence. This is what they put out today and surprise, surprise it’s another piece on genetics. I have to state first of all that this illusion of prenatal testing is ridiculous. We have not pin-pointed a gene or any way to determine whether a child has autism shortly after birth or prenatally. Even though this article states that it has a test for autism, please be aware that this is just a money grabbing scheme. They know a few genes that they have pin-pointed-among the hundreds of other ‘multiple variations’ that have been claimed- that not only occur in those with autism, but those also with other disorders and regular people. If you took 100 people without autism, you will find these noted genes among them. They don’t have autism, so claiming that this test is anything but a giant ploy is ludicrous. Please know that even if they do find ‘something’ they have no treatments. They have therapies and medications that turn your child into a zombie. There are actual treatments that you can spend your money on and they will actually help as opposed to $1,500+ for them to tell you, yes here it is, now let’s make you pay for intensive therapies and pump your kid full of anti-psychotics. Go ahead if that is how you want to do things but I honestly feel sorry for the child. I have spent an immense amount less than that and in 2yrs my son has made tremendous progress, but I’m also not one to look for that easy way out, the one pill cure all that most of these parents are blindly dreaming about. It is not gonna happen; this is far too complex a disorder for a simple quick fix solution. The only quick fix is stopping the increasing number of children affected, but since no one is looking at the actual cause and too focused on genetics, this isn’t happening any time soon.

The very first line tells all, about the motives behind this organization and general researchers of autism.

“A burst of research into the genetics of autism has given scientists insight into the basis for the disorder. Now, some companies aim to capitalize on these findings by developing DNA screens that might one day provide a diagnosis at birth”

Do any of you actually believe that this research is about helping people? Look up the word ‘capitalize’ in the dictionary. This is all about $$$$. Do you honestly believe that the Down syndrome test, which is ‘offered’ repeatedly during the prenatal process, is just there because they care? They make money off of every test done and then for that second test they make thousands more. Do you think sticking a needle into your womb is free just because you don’t see the money coming out of your pocket?

Ok enough of that, you get the point. It’s all about making the dough and maybe as a side effect a possible few kids and families may be helped, but I doubt it.

“That specifically targets the developmental disorder, searching the genome for either irregular CNVs or single-nucleotide polymorphisms (SNPs) that could explain the symptoms.”

So what specific genes are named in autism because last I heard there were 100s of different possible combinations, with absolutely no chromosomal abnormalities? Are they just looking for irregular or duplicate genes and claiming autism? Can they no grasp the fact that SOMETHING has to affect these genes, these bits of DNA to change?

“These tests are not giving any answers and they are costing thousands of dollars “a microarray costs, on average, $1,500, and that’s without the bells and whistles such as doctor visits and additional gene sequencing”

These researchers are making millions looking at an end result.

“Therapies—a market that UK-based research publisher Global Data expects to top $5 billion in the US in 2018”

Why not do something productive in terms of genes and test children at birth and then after regression? Test the difference between parents who believe that their children were born with autism and those who watched their children regress after numerous vaccines.

Then this load of malarkey “These abnormalities remain difficult to detect until a child is around four years of age or older”… Really cause myself and other parents can tell you differently and correct me if I`m wrong but aren`t most children diagnosed around 18mths-2yrs old after nearly a year of actively trying to get a diagnosis. Isn`t that part of the whole vaccines don`t cause autism argument, that children are diagnosed right at the time of vaccines?

They go on and on about treatments and yet they only mention therapies. There is a huge difference and yet still many, many people –even professionals- still use the two interchangeably.

“The diagnostic holy grail is a molecular test that can pinpoint the disorder at birth to hook children into therapies straightaway”

Yes and yet after all this money spent you still have nothing, absolutely squat really. How long did it take to find out the problem with Down syndrome? If it were strictly a genetic problem, we would have no problem finding it. Before I move on I absolutely have to point out the horrific fact that our health system is absolutely burning itself alive. We can test for Down syndrome so why can’t we figure out why it’s happening? It’s like with vaccines, instead of actually addressing measles or any other, we use our ‘prevention’ methods and cross our fingers that it works and no one ever gets said disease again because we have no clue what to do when that happens. Wow we are truly f**ked, seriously over half of these parents have no idea how to take care of sick children. Look at how many are hospitalized due to dehydration…DEHYDRATION…seriously wtf, we should be teaching people what to do when they or their children become sick instead of focusing every ounce of energy into prevention and if that fails; more prevention. Here take this vaccine and you’ll never have to worry about your child getting sick ever again. Yes I am fully aware that this is not word for word what they are saying; I am however equally aware that this is the mindset people are getting because of the message that is being delivered. Don’t believe me, look at the flu shot. Beside the fact that we’ve seen the studies showing this vaccine to be pointless in preventing the flu and only reducing symptoms by %4, the message is ‘don’t wanna get sick and miss work, school etc. Get the flu shot, save your life and others’. So people go on down to Walgreens, the grocery store or wherever they are putting these disgusting stands and get their shot with full thinking that they are not going to get sick. A few days late they have the full blown flu and have absolutely no idea what to do because all they were told was get this and don’t get sick; no one says what you should do if you actually do get sick cause no one gets sick anymore because we have these wonderful magical vaccines right?

So moving on to thee best part of the article…
“We think that 80–90% of what causes autism is really the genetics. But pinning down the genetic cause of autism has been difficult. Known mutations comprise fewer than 20% of all cases of ASD’s”

These guys really have alot of nerve don’t they? They can only find known mutations –none specified, hell -none is ever specified- in less than 20% yet they, in basically the same sentence they try and claim that 80-90% of what causes autism is genetically based. It will take you a hundred years and you still won’t be able to prove that statement, that very poor assumption. If you just look at the increase you will see that 80-90% of what causes autism is ‘outward influence’ and if you close your eyes really, really hard…….you can hear the doctors whisper in your ear that it’s all genetics, you parent are to blame with your poor genes and choice in poor gened mate because he read an article somewhere 5 yrs ago.

Oh but my uncle, grandfather, parent or other has it, I think. Interesting that you can now diagnose everyone including Bill Gates to fit this idea laid out before you. Instead of nodding your head and thinking fondly of the quirky uncle on your mom’s side, why don’t you actually take a look? Maybe it’s all malarkey, maybe just maybe they came into the same situation as your child and what causes their autism is the same. Who the heck is to say, certainly not me because while my family – both side- are insane, quirky, do things other people would never have the balls to do type of people, none have autism, none flap their hands when they get excited, all of them speak and they do not have anything close to the physical issues my son has. Now I’m not saying that every autism is like my sons, not every child has autism because of vaccines- since the issue is much deeper than that- but I certainly am saying that no child is just born with genes like theirs unless there was exposure to something during pregnancy.

I also do love- not- how they pup every one up with ‘autism is caused by genes’ when they have this;

“Found in less than 1% of individuals with ASD. But this mutation alone isn’t the final word on an autistic diagnosis. Some people with the 16p11.2 deletion or duplication have no or few autistic symptoms”

So in short normal speak: you have squat. No wait, in fact, you have even more questions like why does this make sense to warrior parents and not you guys

“And many rare variants associated with autism present schizophrenic, epileptic or bipolar symptoms instead,”

Hmmm maybe they have the secret recipe? No I think they have just been doing a better job than you guys with far, far less money than you have at your fingertips. They know that autism and the above are not strictly psychiatric disorders, they know that these are things that can affect the whole body and that these are things that you are not simply ‘just born with’.

It’s actually quite sad when you think about it, all these people, families, loved ones told that this is the way things are and there is nothing that can be changed. Now we know that it is possible to have hope, that we can make lives better for these people. Take the ‘Gardisil Girls’ for example, there seemed to be no hope and yet when treated for the cause- or as much as we know at this point- these girls get better. The same type of treatment that is helping thousands of children with autism and that can help thousands more.

This is a false hope “A microarray screening for CNVs pinpointed the probable genetic basis for Lily’s autism”… the beginning of the article mentions this little girl as though they were going to reveal the secret to this genetic test that would diagnose at birth, yet now with proper wording you see that it is all just an illusion. They are hoping to come across one child –or group of children- that will unlock it all for them and we know that isn’t going to happen. These children have different causes and are each affected by so, differently and to such extremes it is hard to categorize them under the same diagnosis. One thing stands ever simply though. There is a cause. In this day to continue to doubt that is to pull the blinds shut and let the world move on without you; because we are. Children are recovering. They are not cured, because we can only do so much and we don’t have the money to research this properly. We can only continue our work while we watch millions spent on areas of research that are not helping a single child or family. Not one. Not ever.

And you wonder while all the warriors are pissed off.

“Despite extensive data collection and genomic screening, these microarrays can only identify an associated genetic abnormality in 8–25% of known clinical cases of autism, depending on whom you ask”

So even if we take their highest calculation of 25%, we still have that amount of children with a genetic abnormality that does not point to autism because this abnormality exists in other diagnoses and also regular everyday people. Still let’s throw them a bone and say good job, pat on the back for you. You took $1,500 from this family all to either confirm there suspicions, get tested earlier for therapies or….what? What treatment can you put together from this information? Earlier therapy, sure that’s a good thing I cannot disagree with however, even with those few extra months or years of therapy, you are only going to get so far. What these people aren’t saying out loud is that this test is not foolproof. Imagine taking your baby in, spending this money and getting back a positive result only, your child doesn’t have autism. Maybe there is no harm in that situation, but imagine the time and money spent, not to mention what impact this or any type of diagnosis has on a child. Then what of the other 75% that may be tested and will be told that their child is fine, only to later receive a diagnosis of autism.

I have to note that this article is truly annoying in that they keep relating to finding these ‘genes’ as the cause.
“But we’re still left with 75% of kids who still have an unknown cause.” No correction, you are STILL left with 100% of kids with an unknown cause and 25% of children that have similar gene abnormalities, which may or may not be related to autism.

“Despite the relatively low diagnostic yield, CNV-probing chromosomal microarrays are the recommended genetic test for autism by the American Society of Human Genetics and the Boston-based Autism Consortium”

Of course they are what else do you have? After how many years and how many billions of dollars, what have you come up with? After say ten years and possibly a million dollars –I am estimating extremely high- parents and others have come up with treatment plans and centers that are actually giving kids back their lives. – In a functional respect- They have also started centers for therapies, groups and so many things that actually help.

I’m so glad that they mentioned Fragile X in here because it’s another hot button issue for me. A gene doesn’t spontaneously break; I’ve talked to parents of children who have been diagnosed with Fragile X after a vaccine reaction. Same story; healthy child, meets milestones then regression day after vaccines, only this time it shows on a test as Fragile X. Saying that Fragile X is the cause is again, absurd. What happened to this gene and other genes is an end result. Our genes reflect our state and are impacted by such. Saying that this is the cause leads people to think ‘oh its genes, nothing we can do’ when that is not true. These kids could actually be getting treatment that would make their lives easier and instead they are basically left in their own world and struggling when it doesn’t have to be that way.

“Most of the time, mutations associated with autism are formed de novo in the autistic person.”

I would love to see where they got this from and until I do, I call BS on this. If this were true to the degree that they are stating it, then there would already be prenatal testing and autism wouldn’t be such a hot topic as it is.

Thinking that it is strictly genes is very detrimental to families. There will be few families willing to have another child based on the information being spat and the risk of inheritable autism. The whole family is missing out when it does not have to be so. I took what I know about autism –my sons specifically- and I made a prevention plan when I got pregnant again. My daughter doesn’t have autism and maybe it is just a coincidence, but apparently so are children dying 30min after receiving a vaccine. Who am I to claim truth when I have no money to do research to back up my claims, yet neither do they. Even ground for now I guess, let’s move on.

“Even at the end of the day, the complete genome sequences of 10,000 autistic diagnoses still won’t be able to predict definitively what the detailed clinical outcome will or won’t be,” says Scherer. For that reason, experts emphasize the necessary role of clinical geneticists, like Schaaf, to help interpret the data and make it clear that genes aren’t the be-all and end-all”

*Applause* And even if it was 100% foolproof, it still would not help us with prevention or treatment. It still will not help these children or their families

Finding the cause in genes in order to diagnose earlier or prenatally; is a waste of time, money and resources

We need to know the cause in order to find the cure. We need to stop looking at everything but the obvious.

Let’s open the box and see what’s inside

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Going further into the IOM report

Before we dive right into the preface, let’s count how many times the word rare is used. I count seven. Pay attention to this, it is a very sly way of downplaying things. If you haven’t kept up here it is simply; one side states that vaccines do cause reactions but very rarely, so the benefit outweighs the risk and the other side is asking for this issue to be looked at properly because what they are looking at shows, that adverse reactions are more common than we had past thought.

Since it is still in question –even after reading through this report- this is really a perfect example of how “they” are trying to constantly push that all this is rare, like winning the lottery. You may hear about it but the likelyhood of it ever happening to you is pretty slim.

 

Now there’s a lot I could nitpick about enough to fill up a couple of posts but instead I’ll just skim over them since we’ve all probably heard them several times already and we do have 667 pages to cover.

Thankfully we have a bullet system 😉

  • Vaccines being the leading cause of dwindling outbreaks/us not seeing disease much anymore is in question
  • Because we don’t see these outbreak of disease anymore and aren’t afraid of them is NOT the reason the majority choose to not vaccinate. This myth is also passed around very frequently
  • This article reviewed 12,000 peer-reviewed articles, they did not conduct any new research
    • It is interesting to note that this comes out shortly after a similar review of articles about vaccine safety, only they came to quite the opposite conclusion
    • “….some issues simply cannot be resolved with currently available epidemiologic data…in addition even very large epidemiologic studies may not detect or rule out rare events”
      • We know this already, have been saying it for years and yet the methods have not changed
      • “Some adverse events caused by vaccines are also caused by the natural infection
        • Please keep this in the back of your mind, it is very important. I’m working on a post for it but for now we should note that this only shows that some adverse events will go undetected.
        • “Alleged adverse effects that appear to be immune mediated, as many of them are, are more challenging, in part because the biology is not completely understood”
          • They proceed to go on about pre-existing conditions. These conditions that may have no ill effect on the individual if they were not vaccinated.

What you really get from this preface is that the methods for investigating adverse reaction claims cannot usually determine whether the reaction is from the vaccine or not. Add to the fact that most of the population isn’t even aware that you can report these reactions and that most doctors outwardly dismiss reaction claims and you get a whole different idea than the previous news article about this report is stating. This is not reassuring for the very rare reaction claims. It will be interesting to see if they take any action after this has made the rounds. We need better monitoring better investigation methods and better safety protocols before injection.

 

If 100,000 kids get a particular vaccine and 1,000 have reactions, the current methods would most likely determine that one or less had an actual reaction. Why? Because 300 had a pre-existing condition that without that vaccine no one would have known about or be affect by, 300 did not have enough data so was only concluded as correlation not causation and the remaining will be dismissed because it wasn’t that particular vaccine that caused the reaction but rather the accumulation of vaccine up till that point, with this last set showing visible reaction.

 

Like it or not, this is our current situation. Although the news about this report is only saying that this is a reassurance to those who are concerned for vaccine safety. So far I don’t find this reassuring at all.

So why are we still talking about it?

Vaccines and autism, I’m sure everyone has heard something or other regarding this topic by now and the consensus among a lot of people is the following; Vaccines don’t cause autism. So the question is; has this been thoroughly looked at? Is the discussion over?

The very simple answer is, no. So why do all these people seem to think it is?

There are many reasons why people believe that this ‘link’ has been proven nonexistent, but it all boils down to one thing, Headlines. Just do a simple Google search and you will find many, many headlines claiming that there is no vaccine/autism link or that the ‘researcher who claimed a link has been debunked, striped of his licence, ect’, great news for concerned parents everywhere right? Wrong. Firstly, without getting into the Wakefield issue – I’ll do that later- If a paper is removed, it does not necessarily mean that the concern raised in said paper has been looked at and found to be false. Secondly and perhaps most important is READ THE WHOLE STORY. Underneath the headlines you will come to find that studies have been done regarding MMR and/or Thimerosal and autism. I am not going to discuss every individual study – I can and will if need be – but there are a number of concerns that anyone who has been ‘keeping up’ can see. The most important is where is the  ‘s’ on vaccines reported in these headlines. All I keep seeing is MMR, everywhere I go its MMR this and MMR that. I’m pretty sure last time I checked, children received more than just the MMR vaccine. “But” you say “MMR was the vaccine that was claimed to be causing autism.” Now where would someone get that idea from? Could it be the thousands of headlines that appeared stating that the MMR vaccine causes autism?

The truth; every vaccine is being implicated and the concerns are not just about autism.

So is blaming vaccines the new fad? Did this just start in the last 20-30yrs? No to both, in fact parents have been claiming bodily damages caused by vaccines as long as they have been around. There is even a separate court system –we’ll get into that later – just for vaccine injury claims. VAERS is a reporting system for claims of injuries. These things the general public does not know. It is not highly publicized, rather hushed, but nevertheless still there.

The discussion is not over and everyday more and more claims are being made against vaccines. I have been to government websites, emailed them, soared across the interweb of blogs, chats, groups, newspapers, medical sites etc and still no one can provide the following studies, papers or even articles on; every – or just any other than MMR – vaccine and/or the combined schedule in relation to autism.

Time and time again I am sent links to studies not relating to the question at hand. Is something about vaccines causing more and more children to be on the spectrum? So if you have the answers please send them to me. Until then we have to ask; Are we willing to risk our children with things unanswered?