Autism Genome Project Phase 2
By Katie Wright
The results of The Autism Genome Project’s Phase 2 results were published last week with much fanfare. Media outlets all over the world covered this story. Reporters titled their stories: “Incredible breakthrough,” “Amazing Discovery,” and “Putting the pieces of the puzzle together!” I am so tired of that last one.
After reading the study I came to a number of conclusions. Scientists are very excited about new technology enabling them to better study DNA. This technology has greatly improved their turn around time. These scientists are obviously very intelligent and hard working, exhibiting tremendous dedication to their belief (not mine) that autism is mainly a genetic disorder. My second conclusion is that a TREMENDOUS about of time, money and other resources have been invested in this project, probably more than any other autism study- ever. I would love to know the exact dollar amount, $100 million, more? The need to justify the use of such resources is inherently powerful on a conscious or unconscious level. My final conclusion is a question: How does finding 3% of the genes associated with one of probably dozens of variants stop this out of control epidemic and how will it help kids living today with autism?
Listen I am not saying I have all the answers or this is easy. Even if it meant finding a cure for autism I could not decipher a microarray. But unfortunately, many families feel that the authors of this study have confused hard work, great collaborative efforts and basic science discoveries with meaningful progress towards uncovering the causes of autism. I think recent discoveries that upwards of 25% of ASD kids have a mitochondrial /metabolic disorder, 50% have GI problems and an exponentially increasing number of ASD are regressing into the disorder are all more powerful discoveries than learning 3% of the genetic cause of possibly 1 of 100 variants or autism. However, comparatively zilch has been invested into these huge discoveries.
I have a theory called “Big Man, Big Machine.” It is inherently more glamorous, exciting, clean and publisher friendly to conduct high tech driven gene research, develop new and exciting microarray technology and buy expensive MRI machinery, than actually interacting with autism families and learning about the biggest research gaps. How many of these scientists want to learn about endless failed interventions, frightening and incessant diarrhea or life destroying regressions following adverse vaccination reactions. Because if, God forbid, that were to happen autism research $ would have to be spent on deciphering why the terminal uleium of so many kids look like craters on Mars, why Tylenol exacerbates adverse vaccine reactions, why children with families with a history of autoimmune disease are at the highest risk for autism and finally how the hell does a combination of multiple viruses and dozens of toxic (completely unresearched) adjuvants affect a babies’ central nervous system? Messy and controversial right, who needs that when we can bypass the needs of ASD kids altogether and stick with “Big Man, Big Machine” research. I don’t think these scientists intend understand how autism has truly morphed from a “highly heritable psychiatric disorder” to a form of environmentally triggered brain damage- much like a traumatic brain injury.
None of the genome data is showing us the mechanism that is causing the spontaneous mutations. What is turning on “these rare genetic variants?” Autism is endlessly heterogeneous. It isn’t like sickle cell anemia or cystic fibrous. There could easily be 100 variants of autism. 25 more years of sequencing genes still will not uncover the most important causation factors, nor will it halt autism’s relentless increase. I appreciate the authors’ candor when they said it might be decades until a drug is developed to treat some of the variants of autism. Unfortunately, we don’t have that kind of time. These are the study’s conclusions:
1) Autism risk genes are rare variants in the genome
2) Some new autism genes were discovered. Genes involved with cell growth, communications and genes that respond to environmental stimuli. Hmmmmmmmm. Autism involves genes that are responsive to environmental stimuli…
3) The genes appear to cluster around a specific biochemical pathway in the brain. Drugs could possibly be developed to recover the function of these pathways.
How ironic that a day after the announcement of the autism genome breakthrough the New York Times had a front-page story entitled, “A Decade Later, Human Genome Project Yields Few New Clues.” In 2000 3 billion, that’s right billion, dollars was invested into this project. The public was promised genome research would “revolutionize the diagnosis, prevention and treatment of most diseases.” Since then scientists have discovered many “disease causing mutations…but with most diseases the findings have explained only a small part of the risk.” Like 3% of the risk? Scientists, unlike families, have been pleased with this research because it has produced fascinating new technology and new information on human genetics and biology. Back to the “Big Man, Big Machine” theory, the NYT writes that the genome “has inspired many powerful new technique such chip sequencing… and complex protein machinery!”
However, taxpayers were not paying 3 billion dollars in hopes of basic science discoveries and cool new technology, we were told this money was a direct investment in cures for diseases like ALS, cancer, Alzheimer’s and possibly autism. The genome research was supposed to “generate treatments…After 10 years of efforts, geneticists are almost back to square one in knowing where to look for roots of common diseases.” Genetic variants for heart disease, “turned out to have no value in forecasting the disease.” The genome study looked a huge sample of 19,000 women and discovered that family history was a better predictor of heart disease than genes. The autism project had just over a 1,000 subjects. So is this what we have to look forward to- more money, more inconclusive answers, no treatment or prevention breakthroughs?
Indeed autism families are frequently promised that once variants are identified drugs can be developed to combat the symptoms. However, it isn’t that simple, the NYT states, “the roots of genetic diseases may eventually be understood, but at this point there is no guarantee that treatments will follow. If each common disease is caused by a host of rare variants, it may not be susceptible to drugs.” Great, now what? There are probably 100 different variants of autism and so far we have uncovered 3% of one.
Autism genome researchers have admitted that their projects have been incredibly costly but promise the research will get cheaper as technology advances and will yield useful results once they are able to examine the genes of 30,000 people with ASD. Good grief, 30,0000 people! It took them 10 years to study and recruit 1,000 people! Is it just me, or does that sound insane? It reminds me of compulsive gamblers, “I’ll win it all back if you just lend more money!” “I know I am going to win, trust me, I just need more time and more money!” The money dedicated to autism research is still so small and needs so great, can we afford such a gamble with our limited resources while 100s of treatment and environmental grants go unfunded? The autism genome project is like a Dad with 6 kids going out to buy a family car and coming home with a Lamborghini. Yes, the Lamborghini is a beautiful piece of machinery but can he afford it and is it the right car for his family?
The NYT comment pages on the recent genome reporting were extensive. Wow, I thought autism parents were frustrated and angry at the rate of scientific progress. Many of the comments read like they were written by family members of those suffering with Parkinson’s, Alzheimer’s, ALS…Like us they are stymied by the myopic focus on genes and the minimal investment in environmental research.
“Most cancers are not genetic. Instead they (are a result of) cell inflammation and damage to the system, resulting from toxins. Much like poison oak or poison ivy, the damage spreads. There is a triggering system…many cancers, Alzheimer’s, Parkinson’s disease are, rather than a disease, an injury, which inflammation has spread and grown because of incessant damage…(over) exposure to pesticides is often identical to symptoms of Alzheimer and Parkinson’s.”
One man noted that Alzheimer’s was identified in 1906 but we still have not figured out the cause and the cure.
“Alzheimer’s and Parkinson’s are not etymologically genetic in essence but triggered later in life by unknown catalytic immune (response), metabolic and hormonal mechanisms that climax into the onset of the disease. How is such a process amenable to a prenatal genetic basis?”
“The genome project operates under the notion that there is still once basic cause of disease…genetics, when it is becoming more and more evident that disease is caused by a confluence of factors: genes, environment and stressors.”
“Barring initial defects at the gene level (like Fragile X), epigenetic factors- the influence of all environmental factors, exerts the greatest influence on gene expression.”
We have developed better systems of early detection for both cancer and autism and there are some very helpful drugs that treat the symptoms of some cancers. However, all cancers are rising, especially childhood cancer. Autism isn’t just rising; it is blowing the roof off the house. Spending the majority our research money on genes and brain imaging is not getting us to where we need to be. We need to even the playing fields and immediately prioritize research on meaningful environmental triggers (not parental age). For the sake of our kids we cannot be content with a bar set so low. Finding 3% of “autism genes” every 10 years isn’t good enough. The exponentially increasing rate of autism far exceeds the pace of scientific progress! If we continue like this soon everyone will either have cancer or autism, then what?
Katie Wright is a Contributing Editor for Age of Autism.
@Mohi
I believe it because its real simple.
If autism were genetic, the rates would increase with population, just like color blindness. They don't.
The number of individually targeted drugs for kids with autism is....zero. They seem to do well on DMSA, to remove heavy metals and HBOT, for brain injury.
Posted by: kws | June 10, 2017 at 11:03 AM
I can't believe things have said on this page!!!
What are you so pessimistic?!
I'm one of those who are working on autism genome and YES!! we have found variations which cause drug response side effects in different indiviuals.
Our plan is " personalized medicine " for every single of autistic children.
Posted by: Mohi | June 10, 2017 at 02:56 AM
I can't believe things have said on this page!!!
What are you so pessimistic?!
I'm one of those who are working on autism genome and YES!! we have found variations which cause drug response side effects in different indiviuals.
Our plan is " personalized medicine " for every single of autistic children.
Posted by: Mohi | June 10, 2017 at 02:56 AM
You hit the bulls eye with this piece.
Posted by: claudine Liss | June 30, 2010 at 09:58 PM
Kate I am sorry but I forgot to tell you one last thing. They are not actually spending any money on autism. The information they spouted off at the news conference was, in addition to not being actually scientific and as you noted rather nonspecific, it was probably made up just before the actual news conference.
"Autism risk genes are rare variants in the genome"
Pray tell great scientist which risk genes are those? How did you arrive at that conclusion?
"Some new autism genes were discovered."
Really which ones? Which were the old autism genes?
"Genes involved with cell growth, communications and genes that respond to environmental stimuli."
Wow wee doctor could you be just a little more specific than cell growth and communication, because that is kind of what all genes do they promote by specific genetic information successful specific cell function and metabolism and yes growth.
No Kate the deal is that this genome project actually has nothing to do with autism, AT ALL. They are trying to find a cure for the great vaccine retrovirus plague AIDS, by studying and sequencing DNA and RNA and the various transcriptase’s to the best of their ability, which really isn't much at all, and calling it autism genome research.
Kate file this "research" under "you can fool some of the people some of the time" These fool are beyond transparent and they are crazy clear in their BS.
Posted by: WILLIE | June 30, 2010 at 03:15 AM
It's an ego trip for the leaders of the genome project. They are gunning for the nobel prize. Nothing else but ego (including the ability to admit that they may be wrong).
Posted by: Henderson | June 29, 2010 at 11:48 PM
Bravo, Willie! I trust you are passing this information to your patient base, but with the clear understanding that (depending on how vocal you are) an effort to silence you is always lurking around the corner. Any medical provider who is brave enough to publicly challenge the pharmaceutical/medical war machine runs the risk of professional suicide (Wakefield)and we appreciate your position and your courage.
I concur with your advice, and am part of a 4-generation, 30-member family of intentionally unvaccinated individuals. (no, this was not done for 'religious' purposes--the reasons were rooted in an early understanding of the dangers posed by vaccine DECADES AGO.) As anecdotal as it is: Age range 2-93. Chronic illnesses--zero. Hospitalizations--zero. Pharmaceutical drug use--zero.Surgeries--zero. Vaccines--zero.
Your Plan Works. I recommend the Dr. Willie schedule.
I spend my days working with vaccine-damaged children and trying to educate anyone who will listen. Please encourage your colleages to stand up for these children. If we don't, who will?
VACCINES CAUSE AUTISM.
Posted by: Zed | June 29, 2010 at 08:38 AM
I think there are genetic underpinnings but for autism to happen the trigger (vaccines) are key...
Researchers have known at least as far back as 1976 that vaccines can trigger the onset of autism...(see link to Eggers Study)...
Even though the scientific community is desperately trying to portray autism as genetic, there has to be an environmental piece...
Do you know some genes dictate behaviors like tongue rolling, lip smacking?
So suppose vaccines are triggering the expression of these defects or behavioral genes which otherwise would lay dormant?
Stressors can trigger an expression of disease or behavior. It's like pressing keys on a piano. If genes are expressed naturally over time the music would sound like Mozart if genes are expressed too early or artifially the sound would be like a three year old hammering away on the keys. Timing is critical.
I think the reason they are on the hunt for these defects is to shift the culpability of autism away from vaccines onto a family's genetic line.
I suspect genetic defects are very common in the general population and that we all carry genetic flaws which may or may not be expressed during our lifetimes.
Autistic syndrome (Kanner) and vaccination against smallpox
http://www.ncbi.nlm.nih.gov/pubmed/944354
Posted by: Sarah | June 29, 2010 at 08:32 AM
Forgive me but I hate to break it to some of you people but vaccines cause autism and is not gentic per se.
The introduction of a virus into a infant or neonate given today’s knowledge of viruses and their effects is patently absurd, unethical and in fact criminally insane.
VACCINES CAUSE AUTISM
How can 1 identical twin have autism and the other twin not? Has anybody ever seen 1 identical twin with blue eyes and another with brown eyes, one tall and one short, one bald and one with hair , one black and one white.IDENTICAL TWIN MEANS EXACT GENOTYPE (gene content, DNA) the genotype confers the expression of the genes or phenotype. SO YOU MUST ASK YOUR SELF WHAT COULD POSSIBLY MAKE ONE EXACT TWIN HAVE AUTISM AND ONE NOT? They live in the same house breast feed off the same mom, kiss the same dad so what is the deal?
VACCINES CAUSE AUTISM
If autism is genetic then why is there more protection to breast fed children than non breast fed children? Why should breast feeding matter at all to a genetic disease? The genes are what they are and especially at that age. All breast feeding does is confer immunity to the child through IG_?_
VACCINES CAUSE AUTISM
If autism is genetic then why would gestational age matter?(The gestational age of a newborn is the length of his or her gestation up to delivery.)The genetics of premature children with regard to their expression is typically independent of the gestational age if the child recovers and is healthy. However autism occurs two to three times more common in premature infants than full term infants Why? Could it be that the immature immune system of a premature child is even more overwhelmed than a full term child's and simply cannot withstand the viral load?
VACCINES CAUSE AUTISM
Why is it that some children appear to completely recover after manipulation of the immune system by either diet, anti virals like Valtrex or Zovirax, IGg plasmaphoresis( just like IGg that goes through the placenta of the mother, bone marrow transplantation or complete spontaneous resolution that can happen at any age? Did their "Autism Genes" just completely disappear?
Maybe the genes fell out of their pockets and the kids lost them like a pair of gloves, hey kids are always losing their gloves!
VACCINES CAUSE AUTISM
I realize that this is junior high school biology, Mendelian genetics and all, but what exactly is the inheritance pattern for classic regressive autism? Autism other than Prader-Willi syndrome- which is due to the loss of expression of maternally imprinted (paternally expressed) genes on the chromosome 15 of paternal origin. In approximately seventy per cent of cases this is due to a deletion, 15q11-q13, and in most other cases both copies of chromosome 15 are maternal in origin (maternal disomy) with no paternal copy. Rarely, it will arise as a result of a chromosomal translocation or a mutation in the imprinting centre, which may be transmitted through unaffected carriers.
Fragile X- fragile x inheritance pattern is X-linked recessive. The gene causing fragile X is called FMR-1 and is found on the X chromosome. This gene contains repeats of the trinucleotide CGG Individuals with more than 200 repeats have Fragile X Syndrome and some degree of mental impairment. (There can be as many as 1,000 repeats of this sequence).
As there is no real scientific study that shows a reliable inheritance profile and pattern how can anyone say that autism is genetic if you cannot tell me which genes are responsible? How the genes are transmitted? If they are autosomal or sex linked, dominant or recessive? Again forgive for bringing up these high school biology details but you really do need to have those answers, although a bit cumbersome, if you are going to insist on a genetic origin. If i gave you 100 test tubes of blood to run your specific test could you tell me unequivocally which child had autism base on simply genetic karyotype evaluation?
VACCINES CAUSE AUTISM
Again forgive me for my mundane observations however it appears, on casual observation as it were, that everybody has their own vaccine schedule!!The CDC, FDA, NIH - The scientific leaders and voice of the country, USA, that is the leader of the free world and has without question the finest healthcare in the world, and has been so for decades- They have put together their schedule which is the recommended gold standard that apparently less and less people are following!
Dr. Sears has his own Vaccine Schedule.
Dr. Michael Goldberg says that vaccines do not cause autism but yet he has his own vaccine schedule.
Various Dan! doctors have their own schedules that vary from doctor to doctor street to street, City to city and so forth and so on. Please again forgive me for telling you this but if you people really believe that autism is genetic and completely independent of vaccines and the schedule and you say you believe in science then you really should follow the vaccine schedule put together by Paul Offit and the AAP with help from the CDC and FDA and NIH and foist upon the public. Your child should have a HEP B vaccine the first hour of life, per the recommendations, to protect him or her from the ravages of a disease most common among young adults having gay sex (by far) or shooting IV drugs per the recommendations of the esteemed persons and institutions mentioned above and you should follow them with out so much as a hint of a qualm or trepidation. Of course should you deviate any AT ALL from the current vaccine schedule then you will be found to be wonting and people who know you might begin to talk. They might say what a bad parent you are, some may suggest that you are a hypocrite and not really scientific at all, others still maybe quite harsh. Indeed some might say, out loud, that you are full of shit and a coward for not placing your child on the vaccine alter!!!
In view of the above I have decided to come up with my own schedule as well. I am a physician licensed to practice medicine. Clearly I am well read and versed on the subject at the genetic level and I am convinced that vaccines cause autism through none other than REAL SCIENCE. NOT JUNK PHARMACEUTICAL ENVIRONMENTAL, FABRICATED, MADE UP, FALSE FLAGG SCIENCE.
Therefore here is my vaccine schedule. Do not take any vaccine for anything ever and never ever give them to your children. There that should be relatively easy to follow. Tell them you are following Dr. Willie's schedule.
Posted by: WILLIE | June 29, 2010 at 05:19 AM
Science is stuck in the wrong paradigm -- until it leaves a linear reductionist approach no true answers and no cure will be discovered and the root will continue to flourish.
Thank you for a good analysis. I throw my simple suggestion that we are not looking at the whole into the ring. Parents have identified a lot of the triggers -- but there is indeed a true solution out there, and the answer/cure will not come in the form of a pharmaceutical. The wrong science got us in, and the right science will lead the way out.
Thank you for your tireless advocacy Katie, and god bless your family and children.
Posted by: camilla | June 29, 2010 at 04:30 AM
Good idea Taylor, maybe Autism is like a cold or the flu that one just gets better from, like magic, or normal immune function. In that case, yes it would be pretty hard to distinguish the improving subset from all those magically cured kids.
Posted by: Doodle | June 28, 2010 at 11:59 PM
....If Autism is purely genetic, why no one else's kid in my family (in India) have Autism or related disorder? I have 24 cousins and they have 50 children. Only my daughter has got Autism after Vaccinations in US.
The above comment says it AGAIN in a very clear manner that almost any "cutting edge Autism Speaks bozo" could understand.
Posted by: cmo | June 28, 2010 at 09:53 PM
There's something eerie and unsettling about this whole autism genome study. Why are these scientists so bent on identifying genetic defects? What's the end game? Once all the defects are found and categorized, then what?
How will this data be used? Will DNA define where the social lines are drawn in the future?
I worry they're laying the groundwork for a new form of discrimination based on DNA quality. Will people be discriminated against and subject to prejudice based on the quality of their genetic makeup?
Schools have become sorting factories...separating out the SPED kids from the "NT's".. the gov't teaches peds to "know the signs" and to "screen early". Once your child is labeled then their future is set in stone.
This reminds me of the 1997 movie "Gattaca" in which those with flawless genetic makeups were considered the genetic elite.. They were on top of the social strata. They got the best jobs, they had all the power and money. Those with genetic defects were considered the underclass. They were poor and held menial jobs and served the rich.
See for yourselves:
Gattaca trailer:
http://www.youtube.com/watch?v=o7OYCmynrRU
Gattaca plot summary:
http://www.imdb.com/title/tt0119177/plotsummary
Posted by: Sarah | June 28, 2010 at 08:57 PM
John said: "My child has an ASD but did not have the MMR... I think it is genetic."
My child did not get vaccinated at all. None of my family has autism. So I didn't stop looking for a cause to the mercury, aluminum and other toxins in his body.
Autism is man-made from toxins. If more than one family member has it, it's because of the shared toxin load in the environment.
What I found was my own weakened immune system built a toxic baby. My own mercury load from retained toxins and amalgams "leaked" into my boy. I didn't just say "it's genetic" and give up. I cleaned my own body (while cleaning my child) and feel so much better because of it.
Posted by: DebinIL | June 28, 2010 at 08:43 PM
Janet, they would if they thought vaccines were implicated. They'd blame the tooth fairy and Rumplestiltskin before they'd look at vaccines. It's never the crime, it's the cover up. If they'd been honest from the start parents might not be so reticent today. BP's disaster doesn't help either - it's clear that corps and the gov't agencies that watch them are not looking out for the consumer. It's a shame.
Posted by: Stagmom | June 28, 2010 at 08:33 PM
If 1 in 110 kids started going blind around age 2, you wouldn't spend 3 billion and ten years looking for the genetic defect. You would want to know NOW what the hell HAPPENED TO these children...
great article, Katie- well written, articulate, intelligent- a refreshing piece to read- thank you, you are SO appreciated!
Posted by: Janet Sheehan | June 28, 2010 at 08:14 PM
Taylor Moore,
I have been up all night with a 28 year old that is having seizures.
I am sorry, I am too tired to go into the teaching mode right now.
Here is a link to a man that is trying to teach - problems that can occur in statistics.
Good luck
http://www.wsu.edu/~taflinge/evistats.html
Posted by: Benedetta | June 28, 2010 at 08:12 PM
Katie, thanks for speaking your mind. I hope you will be heard. Autism is associated with many different etiological causes, and newly discovered genetic disorders often involve autism as part of the affliction. What is needed is to discover the toxic abnormal metabolites, like phenyl-pyruvic acid in PKU. Abnormal metabolites are toxic like valproic acid, alcohol, or mercury. They break down the blood-brain barrier, especially in the brain areas of highest metabolic rate.
The "final common pathway" in the brain affected by all of autism's etiologies needs to be found. I have long tried to bring attention to the auditory nuclei in the midbrain (the inferior colliculi). They have a higher metabolic rate than any other structure in the brain, and injury in this area of the brain should make learning to speak difficult.
Posted by: Eileen Nicole Simon | June 28, 2010 at 08:00 PM
My son didn't have his mmr yet either, however, on the day he got his last dpt, his brother got his LIVE mmr during the same doc visit. While I never considered the mmr as playing a part, I can't dismiss it. The older one was bent over in stomach pain for four months, I had his titers measured to avoid a second mmr, he is not autistic. The little one lost all speech during this time and started his regression. I wonder if the oldest was "contagious", or if it was just the dpt that took down the little one.
Posted by: Barbaraj | June 28, 2010 at 07:52 PM
John said: "My child has an ASD but did not have the MMR... I think it is genetic."
Well, good for you.
But not good for the countless parents with children's medical records that show vaccine injuries and an ASD label.
Posted by: nhokkanen | June 28, 2010 at 06:39 PM
Probably after 20 years, these "scientists" will realize that their research is totally useless. If Autism is purely genetic, why no one else's kid in my family (in India) have Autism or related disorder? I have 24 cousins and they have 50 children. Only my daughter has got Autism after Vaccinations in US. These "scientists" are swallowing millions of $$$ in the name of Autism children. In other words, they are robbing our children in a legal way.
Posted by: R Prasad | June 28, 2010 at 06:07 PM
I agree 100% with the points made in this article The thing that I wonder is that in order for this research to stop and the money to be diverted into looking at environmental causes all these well-respected, powerful geneticists would lose their work. I just don't think that is going to happen anytime soon unless the general public became aware that so much money was being so badly wasted and cried out to the politicians.
I think we have gotten the point to the general public that vaccines might not be as safe as they thought. Most new parents I speak to nowadays are not vaccinating and I think autism rates will go down as a result. We owe it to our kids to focus more efforts on finding more treatments that really help today. No more of this genetic garbage that will never help them!
Katie, I hope you express your opinions in the mainstream media as well as here and use whatever media influence you have to make sure the general public is educated on the information you have clearly explained in this article.
(On a side note, I met a mom who had a child with one of the famous autism deletions but the child did not have autism.)
Posted by: I agree | June 28, 2010 at 05:28 PM
Katie said, "Autism is endlessly heterogeneous. It isn’t like sickle cell anemia or cystic fibrosis."
But Katie, you and others may be surprised to learn that there are many, many variations of the CFTR gene (the one linked to cystic fibrosis). And some people who are diagnosed with cystic fibrosis (by very-mainstream medical personnel) have NO, repeat no, genetic mutation.
So the answer, once again, is: knowledge of 'the gene' (or genes), that knowledge is useless for actually producing useful and viable treatments.
With the exception of the very, very small number of therapies which 'fix' the gene problem. This is a vanishingly-small number.
Lots of researchers and ever-hopeful folks say, "But we'll be able to tailor a treatment, once we know the gene."
Okay. When? When is that going to happen?
It hasn't happened for sickle cell anemia. It hasn't happened for cystic fibrosis. It hasn't happened for Rett syndrome. It hasn't happened for Huntington's disease.
For all of them, 'the gene' is known. And studied and re-studied. Millions of dollars have been spent on . . . what?
Time for a change, all of you 'it's the gene' folks.
So I'm saying what Katie said. What she said . . .
Posted by: nonnymouse | June 28, 2010 at 04:57 PM
I remember asking my ped about the chicken pox vaccine and him telling me it was just too new to use. That was in the mid-late 1990s. KIM
Posted by: Stagmom | June 28, 2010 at 04:49 PM
For Twyla,
What's amazing is the vaccine manufacturing drug companies don't even have justification for the MMRV vaccine as many states apparently do not consider Chicken Pox serious enough to be among their reportable diseases.
In 2006, a number of Autism-mercury families were reporting the on-set of serious seizure activity in their kids.
Almost none considered the fact that the seizure on-set related to the fact that vaccine manufacturing drug companies were packing ten times more Chicken Pox disease into their otherwise child-defiling swill.
As it turns out, the unethical drug giants were simply throwing Chicken Pox into the vaccine knowing it would cause all sorts of seizure activity once it hit the market.
?The better to treat you with anti-seizure medications, my dear."
I am including this link because there is a graphic pertaining to one state diligent enough to keep track of Chicken Pox.
As you will see Chicken Pox, and undoubtedly disassociated seizures and deaths exploded all over the place.
http://kerboblog.blogspot.com/2008/11/this-does-not-make-sense.html
(It still doesn't make sense)
Posted by: kerboblog | June 28, 2010 at 04:40 PM
There is only one reason to push the genetic mapping - it will cure autism. Yep, if you can identify a genetic marker, you can test in utero and then "cure" the disorder. Ask the folks in the down syndrome community about their "cure" and how its helped them out.
PS- I have identical twins (one ASD and one not) can't be all genetic!
Posted by: Diane | June 28, 2010 at 04:34 PM
@Benedetta - Can you explain exactly what one has to be careful of in statistics and what would constitute proof? (or what proof means)
I would figure that most people here assume they are correct about things because they are making correlations. This seems like just an informal kind of statistics.
Posted by: Taylor Moore | June 28, 2010 at 04:31 PM
The ASGD (Autism Speaks Genetic Disorder) is thinking that it is a genetic problem,
They certainly are big on themselves in the first paragraph here....
As usual with AS, not one dime has been spent on the treatment of any child.
The "look at us now" hype is rather pathetic...
http://www.autismspeaks.org/press/autism_genome_project_nature.php
....NEW YORK, N.Y. (June 9, 2010) – Autism Speaks, the world's largest autism science and advocacy organization, and an international consortium of researchers,
along with participating families, joined together to announce new autism genetic discoveries from the second phase of its collaborative study: the Autism Genome Project..... (read on to vomit)
Does not AoA have "more members" than AS ?
Posted by: cmo | June 28, 2010 at 04:10 PM
cmo this is what I read in the newspaper a few weeks ago.
In the Lexington Herald Leader; Sunday, June 13,2010
From the "New York Times News Service" by Nicholas Wade
"A Decade Later, gene map yields few new cures"
Summary;
About a decade ago 1989, the Human Geonme Project was started with a goal of sequencing, or identifing, all three billion chemical units in the human genetic instruction set, finding the genetic roots of disease and then developing treatments.With the sequence in hand, the next step was to identify the genetic variants that increase the risk for disease. It was far to expensive at that time to think of sequecning the patients' whole genomes. So the National Institutes of Health embraced the idea for a clever shortcut: To look at just the sites on the genome where many people have a varant DNA unit.
The theory behind the shortcut was that because the major diseaes are common, so too would be the genetic variants that caused them. In 2002 the National Instiutes of Health spent 138 million dollar on a project call the HapMap to catalog the common variants in Europeans, East Asian and African genomes. With this catolog in hand, the second stage was to see whether any of the variants were more common in patients with a given disease than in healthy people. These studies required large numbers of patients and cost seveal million dollars apiece. nearly 400 studies had been completed by 2009. The up shot is that hundreds of common genetic varaints have now been "Statistically" linked with various diseases. (You have to be careful of Statistics because there are known mathamatical problems that show up that can be very misleading, that is why statistics alone must be used only as a guide, and not proof . That little bit of knowledge held true because in the next line it says).
BUT with most diseases, the common variants have turned out to explain just a FRACTION of the genetic risk.
So the theory is now: That each common disease is mostly caused by large numbers of RARE varients, ones to rare to be cataloged by the HapMap.
AND the only way to find rare genetic variations is to sequence a person's whole genome, or at least all of its gene-coding regions. The cost of sequencing has drorped from 500 million the first human genome completed in 2003 to 10,000 starting next year. With the recession maybe 5,000.
The End
138 million!
Posted by: Benedetta | June 28, 2010 at 03:05 PM
They did a recent microarray on my son with autism and seizures, and I found the gene card for it...I looked it up, and it said something about seizures...but when they came back and said "it's not EXACTLY on the gene, but we found a synapse gene"...then they said, well, let's test, your son's sibling who has autism, a girl...no gene...then my husband, yes, he had the gene, but no autism...me, no gene...so, what does that say? My husband is a perfectly functioning no sign of autism NT, and he has the "autism synapse gene"...no...I came back to them and said, listen, it's obvious that genes can be manipulated by our environment, and my son has XMRV, which is known to incorporate into genes like lipid rafts which are known to cause mutations in synpase genes (cpG islands)...so, no, you don't have THE GENE, what you have is an expression of a gene...and genes express, when they are loaded by oxidative stress, and are marginalized...and what pray tell, marginalyzes synapses? You got it, infections like retroviruses, and mercury,....all found in vaccines....all mankind, all epigenetic...case closed.
Posted by: kathy blanco | June 28, 2010 at 03:03 PM
My child has an ASD but did not have the MMR... I think it is genetic.
Posted by: John | June 28, 2010 at 02:59 PM
I am not sure what the "gene machines" cost, but I would assume they are used for a number of other issues besides Autism.
I would guess each university wants to have a "gene machine" so they can secure funding for any and all "endless genetic research" which will provide income for the university & their scientists.
Long term (usually taxpayer) funding is the goal, certainly not finding the cause of anything....
One would think fraud and corruption would end when it comes to children, no so in the US of A/pharma.
Some of the mexican drug lords have more integrity.
Posted by: cmo | June 28, 2010 at 02:11 PM
@Twyla - it's not a double standard it's actually a single standard. The word isn't "disproven" either it's simply that good evidence is lacking.
Here's a hypothetical: Suppose you look at secretin. How do you tell the difference between those people who are getting better on their own and the subset who are responding to the therapy *if* as you assume only a small percentage respond to the therapy.
Posted by: Taylor Moore | June 28, 2010 at 01:54 PM
Great article, Katie. I’m continuously amazed at the quality of your writing and your endless dedication.
Like Heidi stated below, my son is better because we used treatments that other committed parents told us worked. My son speaks, but his articulation has always been very poor. He started speech therapy at age three with virtually no improvement after two solid years. Once we finally got his gut cleaned up, he had a massive die-off and his articulation dramatically improved overnight. I compare those two years to trying to give a drunk speech therapy. All the sessions in the world won’t help if someone is so drunk their speech is slurred.
So how will genetic research help cure bacteria and yeast overgrowth along with their toxic metabolites? Our DAN doctor told us on day one we needed to clean up his gut without running a single genetic test. Children aren’t supposed to alternate between diarrhea and constipation for years. Stools aren’t supposed to be so putrid that they make people gag and choke. Is there a stinky poop gene?
I fear that the goal of the genetic research is not to treat our kids, but to develop a tool to ensure kids like ours never make it into this world. Many people consider our children to be a burden on society and would just assume they weren’t around. Just how has finding a genetic marker for Down’s Syndrome helped anyone with that disease? All it has done is painted a target on those that haven’t yet been born. While I’m angry at all the wasted money, I’m also somewhat relieved it has turned into such a folly.
I suppose the research might be worthwhile if it identified susceptible children who were then exempted from vaccinations. Anyone think that will happen?
Posted by: Jeff C. | June 28, 2010 at 01:18 PM
It never hurts to remind ourselves how money influences the scientific debate and scientific consensus. Here's the Senate Finance Committee report on medical ghostwriting. I would argue that the pernicious effect of money on science also applies to journalism and journalists.
http://grassley.senate.gov/about/upload/Senator-Grassley-Report.pdf
Posted by: Carol | June 28, 2010 at 12:54 PM
it is so sad that they are still looking for and trying to blame genes when you can prevent autism, heart attacks, diabetes, cancer, etc. with diet (Gut and Psychology Syndrome by Dr. McBride goes into this), and reducing the toxins one is exposed to. It isn't that difficult. Lets raise our food properly, eat well, stop using toxin laden vaccines and products, and take care of ourselves. People have cured cancer, diabetes, autism, and other chronic conditions by doing this, published books and studies, and yet, the people in power take no notice. They just like to pad their back pockets.
Posted by: Jen | June 28, 2010 at 12:35 PM
Thank you, Katie, and hilarious analogies. "Jim Bob Duggar buys a Bugatti!"
We can't wait. As this field generates a sense of importance for itself and new toys, the first wave of the epidemic are heading towards institutions which are bound to turn into snake pits as the numbers explode and funding dwindles. Schools and families are going bankrupt, children are dying or losing their futures. It's sick, irresponsible and wrong.
My impression is that they're trying to search for a gene-impacting drug to make "Roundup Ready" (excessive-vaccine-ready) kids in order to preserve the trend of more and more vaccines being added to the schedule. Because in the end, that's sacred. Or else recommending pregnancy terminations in the case a fetus doesn't appear to have Roundup-Ready genetic resistance to any shot they can load on the schedule.
And some complete mook running one of these projects probably does own a Bugatti.
Posted by: Gatogorra | June 28, 2010 at 12:20 PM
I'm of a slightly different mind concerning this project. Personally, I find the whole thing fascinating, and it does help with finding a solution to this issue. Even the authors of the study were unable to to determine the cause of some of the spontaneous mutations in some of the "Autism" genes, and mentioned that environmental factors could be a cause. If there is an environmental factor that is causing these genetic expressions to occur, then finding them is essential.
Let's put it like this; if there is a genetic test we can perform when our children are born that would allow us to determine if they could be damaged by things like vaccines, then we could develop alternate schedules or formulations to prevent more children from developing this condition.
Just a thought.
Posted by: Craig Willoughby | June 28, 2010 at 12:04 PM
It's odd what a double standard there is regarding evaluating significance of genetic anomalies and significance of medical issues or favorable responses to biomedical treatments.
When something genetic is found to possibly affect 1% or 3% of people with autism, it is heralded as a big breakthrough. But if, for example, some people say their kids had major positive responses to secretin, this is then considered to be disproven by a study of a small group of children who did not have a similar positive response. Maybe a minority of children with autism benefit from secretin -- maybe this is worth studying further.
Posted by: Twyla | June 28, 2010 at 11:37 AM
I wonder how much press the study below on seizures after vaccines will receive. At least it did make the L.A. Times:
"Children who receive a single vaccine that protects against measles, mumps, rubella and chicken pox appear to have an increased risk of fever-related seizures in the days after the shot than do children who receive two separate vaccinations.
"A combination vaccine that protects against measles, mumps, rubella and varicella (commonly known as chicken pox) was approved for use in 2005...
"A new analysis from the Kaiser Permanente Vaccine Study Center, however, shows that the four-illness combination vaccine doubles the risk of a fever-related seizure among 1- and 2-year-old children seven to 10 days after the shot."
http://www.latimes.com/news/health/la-sci-vaccine-20100628,0,6982343.story
But they added that, "Febrile seizures are very frightening to parents. But they are benign and don't cause any long-term problems for the child."
So if you have a febrile seizure with no consequences it is related to the shot, but if you have a febrile seizure followed by autism, IBD, and/or seizure disorder that is just a coincidence.
They also say that post-vaccine seizures are "less common than fever-related seizures linked to colds or respiratory infections". I wonder how they know this. When they tracked seizures occurring during colds and respiratory infections, did they look at whether those children were recently vaccinated? My daughter developed croup and had a seizure after receiving the MMR plus a varicela vaccine at the same time. It did not even occur to us at the time that it could be vaccine related. As the CDC web site used to say, "The virus that causes measles disease infects the respiratory system and then spreads to lymphatic tissue (an important part of our immune system).." And did they look at whether unvaccinated children respond to colds and resperatory infections with high fevers and seizures? Or whether vaccines may sensitize the immune system, causing more high fevers and febrile seizures?
My point being, there is so much more to be researched that could have immediate impact on our understanding of autism causes, prevention and treatments.
Here's an interesting article about how little has actually been researched regarding the impact of vaccines:
http://passionlessdrone.wordpress.com/2009/05/13/a-brief-overview-on-early-life-immune-challenges-and-why-they-might-matter/#comment-52
Posted by: Twyla | June 28, 2010 at 11:29 AM
With 90% of the cells in the human body not of human origin, perhaps we should not be surprised that study of human DNA has had a limited impact on understanding of disease. Natural selection may have been more effective that we appreciate, both for us and for the pathogens.
Posted by: GH | June 28, 2010 at 11:27 AM
I wonder which genes are involved in not being able to see the forest for the trees.
Posted by: Carol | June 28, 2010 at 11:01 AM
Great article! Do all of these hi-tech tests fly in the face of basic toxicology? Hasn't the LD50 been determined on most toxins? When did we go looking for the "genetic" reasons for half of exposed animals dying. Surely there is one, but does it make a difference.
Posted by: Barbaraj | June 28, 2010 at 10:21 AM
That is why we must all pay out of pocket, prove our children are sick, hold the insurance's feet to the fire, then in the end,,, when insurance is tired of paying for medical issues, they will want to go after the cause.
Posted by: spacekitty | June 28, 2010 at 10:16 AM
I find great irony in the claims of charlatanism against DAN doctors and those actually helping our children now compared to the claims touted by the media and government of genetic and psychiatric researchers.
Posted by: K | June 28, 2010 at 09:55 AM
L_TRoc -
If good research, honest universities, ethical investigators, and well meaning organizations keep up the good work of showing how the majority of autism cases are not genetic, many on the Genes R Us money train(AS, Yale, Chop et al) will be sweating big time.
As far as your opening line re vaccines and autism, that would be called "a tell" and negated any validity of your comment. Anyone, who at this point in billions of dollars wasted, still pushing "gene cures" and "steps of science" for autism instead of the visible, physical effects of environmental/vaccine damage, sounds like a really bad, used car salesman.
Posted by: Teresa Conrick | June 28, 2010 at 09:52 AM
Katie, great article! We will all be dead and gone at the rate the autism research is going before the hope of finding the real cause and cure for this devastating disease! Society can't afford to support the huge autism population of the future any more than they can now. Our children can't wait another 30 years for the answers to this autism epidemic! They need help now!
Posted by: Gayle | June 28, 2010 at 09:12 AM
Yes, it is truly mind-boggling how much time and money has been wasted on gene research. I get the impression that the vast majority of people just think of gene research as a small but important slice of the overall research pie, and assume that plenty of studies on environmental triggers for disease are also being funded. Many people would be truly shocked to discover just how little honest scientific inquiry there has been into possible environmental triggers -- for autism, autoimmune disorders, and cancer. Diseases that were either rare (autism) or non-existent (auto-immune disorders) 100 years ago in the U.S., but are prevalent now -- and yet are still very rare or non-existent in other parts of the world -- seem like the easiest medical mysteries of all to solve: Just compare the populations and their environments, see what is different and what has changed, then zero in on the prime suspects, which in each case would likely be the same short list: industrial pollutants (chiefly toxic metals), pesticides, antibiotics, hormones, drugs and vaccines). The reason we are not solving these relatively straight-forward puzzles is because we are not even trying. How truly sad that is...But I do think the Internet is going to change all of this... Indeed, it already has. What's going on right now in the autism community, for example, is remarkable and unprecedented. Parents are doing the necessary research on their own, sharing their results with each other, finding effective treatments, and curing their own children. It is easy to see why you are all such a threat to the scientific establishment. Yet, in the end, all of society is sure to benefit.
Posted by: lisa | June 28, 2010 at 08:55 AM
Last word I got, we have a better than 1 in 3 chance of getting cancer. And what sickens me the most, is all the hype, "We have made breakthroughs in cancer treatment." Garbage! How can one say we are making breakthroughs when the rise in cancer is alarming? Look at the real genetic disorders, like MD and Down Syndrome. How has knowing the gene lead to any effective treatments? It hasn't. I am sick of gene research myself. I want results, and nothing else matters. My kids are recovered because I ONLY listened to those who had results in recovering their children and did what they said. If a scientist who discovered a gene issue had results in ridding symptoms, then I would listen to him. But, so far, all I have seen is that they are good at obtaining grant money. I'll stick to ONLY paying attention to those with actual results. And what's even better, their information is free!
Posted by: Heidi N | June 28, 2010 at 08:54 AM
We always hear experts in the paper say Autism has a genetic component with some kind of environmental role--and yet, investigations into environmental triggers get denied funding. No matter how much money they throw at genetic research only that is never going to by itself get to the heart of the matter. My guess is they want to use the genetics to find drugs, then they will never have to ask the important, hard questions about what is triggering the condition, especially in those regressive cases.
Posted by: AnaB | June 28, 2010 at 08:46 AM
I agree with Media Scholar. My son's elementary school is closing down one of it's autism classrooms because the kids are not coming and their needs are better served in general ed with LD support. My son who is 11 will remain in the autism classroom because he has autism. He got lots of thimerosal in 1999 and early 2000.
On the last day of school last year, 3 of the parents of the younger kids in an autism classroom openly admitted that their children did not have autism, more sensory and learning issues. Which was very obvious to me.
How will they ever continue to claim that autism is rising when they are closing classrooms?
Posted by: Mary | June 28, 2010 at 08:21 AM
L TRoc,
I am not the one who promised that the genome mapping investment would "miraculously transform the diagnosis, treatment and preventions of diseases"- it was the NIH. 10 years later they are far from making good on that promise. I am not buying the "spin" only quoting it.
Posted by: Katie Wright | June 28, 2010 at 07:59 AM
It is a brand new study.
It now has even better machinery.
It can sequence faster.
Yet, the word (wrench) in gene study that thrown into the cog is environmental.
Only it is not environmental birds scooping up mercury, alumiunium, heavy metals and poisons from volcanoes and pooping down mercury on top of us.
I went to Central Baptist yesterday to the ER to get my daughter who had a seizure at work. The landscaping was out of this world, brick posts holding up huge wisteria vines, cute little bronze statues of little kids, or an old man sitting on a bench. They had brand new buildings - Central Baptist has sure grown -it is huge. Just like every damn hospital I have been in the last few years
.
Even Ashland Ky way to the east is now a huge outfit -Regional Hospital is what they call it.
They all have one thing in common. They all have built huge new buildings on to older ones. It is all like a maze, a labeyerith that reminds me of that ancient Greek myth were the monster bull of Crete lived in. We go in there harmed with nothing and we are lucky to get out of them with our life.
Posted by: Benedetta | June 28, 2010 at 07:38 AM
We should be spending our dollars on the special sensory housing needs that will be needed in the next 15 years as 500,000 thousand children who now have autism will become adults. if we don't begin now, we are creating The Perfect Storm!
Posted by: Karen Lepak | June 28, 2010 at 07:31 AM
Autism isn’t just rising; it is blowing the roof off the house.
---------------------
Is that right?
Reports from across the country indicate that Autism is going down. Affected children are far less evident and the vast majority are mainstreaming in a year or two.
Parents call the new kids "Autism Lite" for the fact that they are now being lightly dusted with ethylmercury.
The rate fall is the reason "Fast Fingers" Thorsen and friends want to manipulate DSM criteria. Aspbergers Syndrome is not an Autism Spectrum Disorder, but it will be.
It's also the reason why the vaccine manufacturing drug companies are still combating Thimerosal-free legislation and inventing new ways to circumvent existing state bans on Thimerosal.
If one examines the complete uselessness of any influenza vaccine one will discover why it is so glaringly obvious the vaccine manufacturing drug companies are pushing it solely for the Thimerosal effects.
Pathognomonic of genocide, I'd say.
Posted by: Media Scholar | June 28, 2010 at 06:46 AM
This article is as silly as saying vaccines cause autism. To seriously consider that mapping the human genome would miraculously & immediatley lead to a range of 'cures' is ignorant to the many steps science must follow. You bought the spin.
Posted by: L_TRoc | June 28, 2010 at 06:30 AM