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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Warriors Blacklisted

I try so hard to stick with articles and talk about issues in the autism community, without letting things become personal. Even after this post I’ll still be able to say that, but less heartily as I once could. In a way this is being taken personally, even though none of this is directed at me specifically, nor do I think I have even made it on; yet that wouldn’t matter. This is being directed at parents, people trying to treat autism and basically anyone who does not agree with what ‘self-proclaimed’ aspies say autism is. I’m not just talking about this Blacklist, this has been going on for some time and will continue to do so. I hold little hope for it being resolved anytime soon but I know there is common ground between us and real adults on the spectrum. I know this may seem harsh to just divide it to these two groups but that is what I’m discussing at this moment, so that is the division. This isn’t about vaccines…not really.

So you have one group; parents of children with autism who are trying to ‘cure/heal/treat’, whatever word is popular these days. Vocal, sometimes angry, mostly well-knowledged and completely well meaning; they are warriors, in all sense of the word.

Then we have the other – not limited to- self diagnosed aspies. They feel that by looking for a ‘cure’ or treating or even researching in the wrong directions; we are trying to create a pre-natal test, wipe them out, get rid of autistics everywhere and on and on.

No other ‘disability group’ have I seen that has this kind of drama; it’s like being back in highschool ( not like I was there most of the time anyway) but I sure as hell knew about the mentality that happens when you put too any people together for a length of time. So why is this so different than other groups. Why aren’t people with MS, cancer or diabetes fighting amongst each other?

How about a different perspective, we’ll shift the same type of disagreement over to the diabetes group. Type 1’S and type 2’s are going at it, one believes that they are the ‘true’ diabetic while the other is just ‘diabetic symptoms’ or ‘acquired diabetes’. One believes that diabetes is purely genetic (even after years of researching –and billions of wasted $’s- has shown this to be untrue), while the other believes that something is causing diabetes to happen and is screaming to the greater health care charges to look into it (they are even willing to provide as much information as possible and to participate in any tests required). One side is proud to be diabetic while the other just wants to be rid of all these horrible health issues accompanied with diabetes and live a life like they are supposed to – free to run, play and eat how they want-. Now suddenly the ‘proud’ ones think the ‘ill’ ones want to wipe them out, to take away their diabetes; by force if necessary.

See, isn’t that ridiculous? Yes I am making a mockery out of this because it is stupidity, plain and simple. Now we are wasting time dealing with this crap, creating groups, trying to shut down discriminating pages; yes we come together even more after one of these bouts, connecting to new people and all that but our energy is taken away from more productive means. Then there is the part causing me to become highly defensive regarding my children. See I’m a momma bear type, you get in my face or provoke me and I’ll deal with you in as light a manner as possible. Touch or offend my cubs and the oversized paws with huge skin shredding claws come out. Not a pretty picture and usually it doesn’t have any effect on me at all since people generally don’t say squat about my kids let alone offensive remarks. I’m not alone in this, other moms and dads are the same way and we would fight until our last breath for our child.

So there comes a point when enough is enough. We’ve been called crazy for believing we could treat our children, called horrible parents because we search for answers, been told that our children should be taken away, that they should be felt bad for, that they deserve better and that we are monsters, bullies, ‘like nazis’ and that we wish to eradicate the world of those with autism. All of them and also kill all babies that will possibly have autism, that will be tested by some imaginary means. Yes, I am trying to make a mockery of this in hopes that it quells my anger, because frankly; I’m right pissed off. This is no longer just some people who are so attached to the ‘my child was born this way and I would never change it, shame on you for thinking you should and trying to find a cure’, no this is becoming an outright attack on parents who are using all their energy to not only help their own but also help others as well as fight the system that is hindering these kids more than it’s helping.

You want it in black and white, here you go

  • These parents spend all their child’s waking hours working to earn money and/or caring and helping their children
  • They sacrifice their own time and luxuries to make sure that their children are living happy healthy lives
  • These children are not neglected nor are they under duress and they certainly are not being punished for stimming or other behaviours deemed weird by the general public
  • When these children are settled, sleeping, at school or busy with a lone activity; these parents spend that time researching, learning, helping and fighting for things that would benefit their children
  • They end up possibly losing friends, family and partners on their journey but they do it for the betterment of their kids
  • They spend countless hours worrying, planning and trying to figure out the puzzle
  • They also sit outside their kids bedroom door at night, marvelling over the profoundness of these kids, of the funny quirks, the courage and the love they have to give

These are not monsters doing experiments on their children. These are not people looking for some way to rid the world of all things autism. They are just trying to make their children healthy. Then the whole prenatal autism test. Seriously, there is no such thing and I highly doubt that there ever will be. You can keep going around trying to tell everyone that it is hereditary, that it’s in the genes but you have absolutely nothing to back that up. Let’s see, they’ve been looking at genes in regards to autism for what 30+ years now? Could be wrong; may only be twenty. What have they found, really? Over 100+ different combinations found only in those with autism. Hmmm, well that’s it folks, problem is solved. You heard it, all genes that are passed down and no way we, can do anything about it. So this test is, where exactly? Oh that’s right, you don’t know the specific gene, gene sequence or chromosome that is affected and therefore you cannot produce a test. But if by believing you that it is in fact hereditary, we should have no problem creating a test prenatally, since by your definition; we can already test now right? Of course this doesn’t make any sense. If autism was truly ‘passed down through generations’ we would have found ‘the markers’ by now. What’s the point in the end anyway, we don’t have the means to treat genes specifically.

Then again, everyone always misses the simple point; genes are the end result. They are like the crime scene; you can see how the victim was murdered, what surrounding areas were affected by the scuffle that ensued and yet; without the murder weapon, you cannot accurately solve the crime. Genes are affected by numerous things. They are turned off, on, can mutate and all that but they do not do it on their own. Your genes do not just ‘spontaneously mutate’ but rather are caused to do so. An outside force affects these genes and by looking at genes we can merely figure out which areas are being affected. We do not have the means to do more than that. We will never be able to create a prenatal test for autism like we have for DS. This is just not possible.

However, an after test is entirely possible but would be very flawed since not everyone under the umbrella is affected by means similar enough to measure; that I know of. There are a few tests that have been around; metal testing – all children I’ve heard of being tested, have tested high. I don’t know any adults that have had themselves tested. There is also a urine test developed – not sure if it’s widely used yet or not- that measures opiate levels and other levels – the drawback is that not every child with autism has the same problem with opiate foods and thus some will test negative and still undoubtably have autism. This isn’t even taking into consideration regression cases; I’m extremely curious as to how these children would test before and after regression. Of course the only recognized test for autism is based solely on behaviour and it will continue to be as long as people like those I mentioned earlier continue to chastise parents for seeking answers and trying to help.

It’s very frustrating to watch your child in pain and then have someone claiming to have Aspergers tell you how wonderful autism is, what great abilities it brings and how these health problems are just made up bologney that disgruntled parents made up. How autism is really just evolution and that all the super smart, slightly lonerish people have it, like Einstein, Bill Gates and the like. Yes sometimes parents can become overwhelmed by their situations and the main reason is the lack of support they receive because of these concepts being spewed by people who are literally self diagnosing themselves. I enjoy talking to people that really have Aspergers. We want alot of the same things and fight for a better understanding or what autism is and how people with autism are just that….people. I love hearing the firsthand experience of it and learning more about how my son may interpret things. These people also know that autism isn’t all flowers, neon lights and super brainiac abilities. Leave the sparkles and beads for the gay/lesbian parades and really look at the situation. What adults with Aspergers are experiencing IS different from what are children are. There are areas that cross over similarily but the children today seem to be affected worse or maybe the adults bodies have adapted over time. We don’t know and will not know as long as; individuals self diagnosing themselves, to be part of the smart people with abilities, that are more evolved than ‘neurotypical’ people, keep falsely crying bully every time a parent says autism is treatable.

That’s the gist anyway. Now there are ‘mobs’ and new classes of bullies. People are again reporting others because some disgruntled adult tells them that these individuals wish death on those with autism or some other similar, blatant lie. Then parents end up having CAS/CPS called or their homes are stalked, vandalized and just when does it end?

Is research being misguided because people still believe that it is strictly a brain or psychological problem? Is this in fighting distracting us from pushing for better laws, funding and resources for those with autism? Are children missing out on treatment because their parents are made to believe that there is absolutely no hope and that anyone who tries to give them, even a sliver of it; is made to look like a hater of those with autism, bent on trying to change their personalities, essentially take away who they are? Yes to all on many more. This isn’t just highschool name calling or some unconsequencial debating. This is attacking, detouring and ultimately holding us back more and more. Yes I could make it on the new list if I wanted to but it is already enough that I feel the need to waste my energy calling attention to this.

There of course is always a positive to negatives like this. If you are a parent of a child on the spectrum and are trying to help said child. This list will provide you with names of similar minded people, others who fight with every ounce they have to make the world a better place for their children and they are a valuble resource. So visit the page, add everyone on that list, report it then move on.

In the autism community there is always regression, it’s our ability to move past these that makes us the warriors that we are so aptly named