SPARK Autism Research - You're Going The WRONG Way!!
By Teresa Conrick
Here in Chicago, they have been reporting on the SPARK Autism, national database. This from our local ABC, channel 7 Chicago:
RESEARCHERS AT RUSH MEDICAL CENTER CREATING NATIONAL DATABASE TO STUDY AUTISM Sunday, December 18, 2016
Some highlights-
∗ Autism is one of the fastest growing developmental disorders in the United States. It now affects one in every 68 children and on in every 42 boys.
∗ That's one reason why there is an intense push to try to find treatment and a possible cure. There is a major research study taking place at Rush Medical Center in Chicago.
∗ a ground-breaking research study, which is now gathering genetic information on autistic individuals. They're creating a national database.
∗ Every day we struggle with it and every day we hope that, in the back of your mind, that studies like this are going to help us," said Tony Belmonte, Jack's father.
∗ Nation-wide they are hoping to register 50,000 individuals on all levels of the autism spectrum. There is a concentrated effort now to get more minorities to sign up for this research.
At the bottom of the article, you'll read this: For more information about the Rush autism study, visit www.sparkforautism.org/rush. There you will go to a website which is not RUSH Hospital. To find out more, click on About SPARK on the bottom of that page. There you will see that, SPARK stands for ‘Simons Foundation Powering Autism Research for Knowledge,’ and the mission is simple: we want to speed up research and advance our understanding of autism to help improve lives. If you or your child has a professional diagnosis of autism spectrum disorder, learn more about SPARK here . If we keep following them, we can read even more about this plan - SPARK aims to build a research community of tens of thousands of individuals with autism and their families, who will be asked to share medical and genetic information with scientists and to agree to be contacted about future research studies.
For the person who knows little about the who, what, when, where and why of AUTISM, this could look to be promising BUT for most of the rest of the world, people are not accepting this approach anymore. The search for genes is NOT, nor has it EVER been helpful "to find treatment and a possible cure." Autism Speaks did this same thing, came up with a gene depository to look like they are using their money for something helpful. Sadly, this approach has done NOTHING for the tens of thousands of families who have children and now, young adults, who suffer with painful GI disease; seizures; inability to speak or communicate in a meaningful manner or, at all; extreme sensory disturbance; executive functioning disability; debilitating obsessions, compulsions and tics; heartbreaking self-injurious behaviors; and the daily struggles with social cues. This type of genetic research is going in the WRONG direction.
Back to Rush Hospital, where I am lucky to have an excellent neurologist that Meg has been seeing. When he saw Meg last, he was so impressed with how much better she was both medically and socially. Meg has been seizure-free now for over 18 months. Yes, she is anti-seizure medications (and still was having occasional seizures) but it has been the focus on the MICROBIOME that we have seen the most help and promise for my severely affected daughter. In that conversation at Rush, I told Meg's doctor about my keen interest on the research regarding the Microbiome and my hopes for further research and treatments. He mentioned that Rush was doing research on the Microbiome but not yet on Autism. The research was instead being conducted on Parkinson's Disease. I am a big believer that theses studies on Parkinson's and Autism have parallels and will help each other.
So instead of the above, GENE, wild goose chase, follow me instead. Here is that RUSH Hospital study about Parkinson's and the Microbiome...and Autism links:
Axial finds link between gut microbiome and Parkinson’s disease, 12-13-2016
BOSTON & PASADENA, Calif.—Axial Biotherapeutics announced Dec. 1 that researchers from the California Institute of Technology (Caltech), led by Dr. Sarkis K. Mazmanian, the company’s scientific founder, have discovered a novel biological link between the gut microbiome and Parkinson’s disease (PD)....gut bacteria were shown to promote hallmark disease processes including inflammation of the nervous system and motor dysfunction. The findings suggest that targeting the gut microbiome may provide a new approach for diagnosing and treating Parkinson’s disease...bidirectional communication between the gut and the brain has been implicated in neurological disorders such as anxiety, depression and autism spectrum disorders.
Parkinson’s, Autism, and Back To the Future
NOTE- Since the time I wrote this, the Chicago Cubs HAVE WON the World Series!
Overall, the main finding from the study is that adults with autism may have substantially elevated risk for Parkinson’s disease….We find a high frequency of parkinsonism among ASD individuals older than 39 years. If high rates of parkinsonism and potentially Parkinson’s disease are confirmed in subsequent studies of ASD, this observation has important implications for understanding the neurobiology of autism and treatment of manifestations in older adults......
Here we see Autism Speaks possibly moving in the RIGHT direction -
At the 2016 International Meeting for Autism Research (IMFAR), Dr. Luna shared the earliest findings from their Autism Speaks research – the first analysis of the microbiome of a child with autism and GI issues – together with a comparison to the microbiome of his unaffected sibling.
From this small pilot test, they found some significant results. The analysis showed that the child with autism – but not his sibling – carried a number of distinctive intestinal bacteria that earlier research had associated with autism. What’s more, these bacteria spiked in numbers during periods when he experienced significant worsening of autism symptoms – including self-injury.
Above All, Autism, When It Comes to the Microbiome and the Immune System
It therefore seems plausible that exposure to chemicals may affect the normal colonisation of the gut by bacteria, with effects on host physiology later in life. Therefore, chemical-induced perturbations of the composition of the GI microbiota may constitute an underestimated mechanism by which they interfere with human health...Three types of "chemicals" often cited in Autism research and by parents are 1- Vaccines , 2- Pesticides and 3- Mercury...
Some more hopeful directions for 2017:
- Gut check: Newest microbiome startup concentrates on autism, Parkinson’s disease
- Baylor investigates antibiotic use, children’s improved autism symptoms
- Microbes in your gut matter in Autism
- Single species of gut bacteria can reverse autism-related social behavior in mice
- Study provides clues to improving fecal microbiota transplantation
As we welcome the new year, let us welcome the new and better direction of AUTISM research. As far as the SIMONS Foundation and their SPARK gene forever odyssey, here's my best advice:
YOU'RE GOING THE WRONG WAY!
Teresa, Obviously your commentiers don't get it i'm deeply sorry for. I would make an educated guess that none of people behind the above comments are autistic. I happen to be autistic. My expertise of 56 years knows this article is about SPARK and the Cure. What you had to say about how SPARK sugarcoats their intentions. You are awesome to figure who and what SPARK is in 2016. I came up with the realization this year. It wasn't until found then shared your article with the autistic community on facebook that I was validated among my autistic peers and their parents. Simply put SPARK is out to find a cure. To the autistic person that means they are out to wipe out the autistics of the planet. Despite SPARK's claim they are for the enrichment of autistic people then why do they associate themselves with Autism Speaks (for the cure), University of North Carolina at Chapel Hill (for the cure), Rush Medical Center in Chicago which you are strongly implying are for the cure. In my research I found a very prominent doctor with ties to the University of North Carolina at Chapel Hill is for the cure. I may only have circumstantial evidence. If SPARK was a puzzle that was just spread across a table we wouldn't know what the picture was, but when it comes to SPARK once you put the puzzle together we can clearly see there is little doubt SPARK is for the cure. It would be enough to stop here yet it is important to tell everybody that SPARK and Autism Speaks are no friend of autistics. They both lie and tell people they love and tell autistic people they are for the growth of autistics. It is everything but those things. These organizations do NOT speak for autistics. As I wrap this up I have to warn everybody, especially parents of autistics that Applied Behavior Analysis (ABA) is the worse thing we make our children suffer through despite the happy face the autistic child gives you. Please listen. At least 98% of autistics I have spoken with strongly say ABA is Abuse!
Posted by: Robert Butler (Proud Autistic) | June 23, 2019 at 04:32 PM
Hi Crimson Wife,
I am not quite understanding you here.I know that fragile X is a genetic cause of autism. But as far as I know basically the mutations that were showing up in people, are present in both people with autism and people without autism, so they can't be a cause of autism, just a susceptibility that creates autism when coupled with an environmental trigger.
For example, my family all carry the MTHFR gene, which almost certainly makes us more vulnerable to vaccine injury, ( it effects the glutathione pathway and studies show we are more likely to have smallpox vaccine injury) but without the environmental trigger, it won't cause autism by itself.
Does your child have some mutation that is only present in autistic people and not in anyone else? What mutation is that, please?
Posted by: Hera | October 02, 2017 at 08:03 AM
I was SOOOOO sure that my daughter's autism couldn't possibly be genetic because there is no family history. But after years of going from one doctor/therapist to the next and with only mild improvement (definitely far short of a cure) from DAN/MAPS biomedical treatments, we finally did whole exome genetic sequencing. Turns out that the autism actually IS genetic in cause- it's just not inherited. It was a spontaneous mutation. Understanding how the misshapen brain protein causes the autistic symptoms could lead to potential treatments.
I think if doctors routinely did whole exome sequencing on children with autism, a LOT of them would turn out to have these kinds of spontaneous mutations.
Posted by: Crimson Wife | October 01, 2017 at 10:55 PM
Teresa,
Dr Kim Lewis (Northeastern) has a team studying the microbiome in Lyme for therapeutic possibilities, in conjunction with Aucott (Hopkins).
He mentioned it in this conference.
https://m.youtube.com/channel/UCRUjdghBT0pyNSx14ukrKDw
Hopefully, there will be something learned to help multiple neurological issues.
Posted by: greyone | January 19, 2017 at 06:33 PM
Teresa: There is a fascinating talk given at NIH by a very bright fellow named "Skip" Virgin, MD, PhD. I've made extensive notes, but am going to bookmark it so I can listen about fourteen times. I think listening to this would deepen your understanding of the complexity of these issues. He speaks of biome, virome, and host interaction. The virome, unlike the biome, has been little studied and is, as yet poorly understood. I've accessed it from the bottom of the greenmedinfo post from about three days ago concerning influenza.
Posted by: Gary Ogden | January 13, 2017 at 11:54 AM
I can’t resist adding my view. I have been Senior Research Scientist for the Therapeutics Research Institute [ non-profit] for over 15 years, and a medical researcher for over 40. The genetics “story” and “spin” in my opinion has as its main payoff the diversion of funds to the massive research infra-structure that pursues those elusive genes. Once possible or potential candidates are found, another 20 years and untold expenditures will be poured into converting these minuscule and essentially irrelevant discoveries into drug treatments. Or just more gene “discoveries.” Nothing productive will happen. This all mimics the cancer industry with essentially the same agenda. Francis Collins helped spearhead the genetics march in cancer and so as with any hammer, the whole world looks like a nail.
Conversely we have been implementing an Autism Intervention Study for over a year now. The results have been utterly extraordinary, and we are expanding the study to 30 families, then 300, families, then 3000 families, and finally to most of the entire autism-affected population. This is strictly grass-roots science that simply is providing an answer while mainstream research continues the drumbeat of capturing billions of dollars for what is decidedly the wrong way [unless of course you are on the positive side of that funding].
Our initial research summarizing our findings was published, and we are getting ready to publish a follow-up. The article appears at http://oatext.com/Initial-outcomes-from-an-autism-treatment-demonstration.php and a site that describes our efforts is at www.ControlAutismNow.org. Nothing is being sold, we charge no fees, everything is free, and the results continue to be astounding. Since such “boring” grassroots science has not captured any external funding to date, we simply add families as our own personal funds allow. We are confident that at some point the documented outcomes will catch the eye of some benefactor who is not taken in with the gene hype and who will let us expand the implementation far and wide. I will keep you posted.
Posted by: Steven Evans | January 04, 2017 at 01:53 AM
Any plans to begin an endless search for the "thalidomide gene” so we can get that fine product back on the market ?
If those with the thalidomide gene could be eliminated, that would open the market back up to everyone else and create some wealth for a number of medical intellects.
Even if they cannot find the gene right away, they could cover the promising leads, perhaps start a “Thalidomide Speaks” group to walk in circles and carry balloons.
Posted by: go Trump | January 03, 2017 at 11:26 PM
They lied about the research Wakefield did. Until what happened with the Lancet paper is acknowledged across the board there should be no further autism research IMO. What is the point? Deer and anyone involved belongs rotting in prison. The best way for Trump to expose the lying, crooked, child murdering, American hating media is to bring the Deer fraud front and center along with all the evidence of the intentional repetitive brainwashing of the public. 1998 1998 retracted fraud fraud Wakefield license revoked struck off the medical register consensus safe and effective blah blah blah blah.
Posted by: NoLieLivesForever | January 03, 2017 at 08:10 PM
Teresa: Wow! Impressive work, going back to 1971. Forty six years of wheel spinning. Shame on government for inertia, and academia for their obsession with status-seeking behavior. But good things are in store, as more knowledge and better therapies are developed. For some time as I've been reading about the gut microbiome, especially thanks to your diligent work, I've suspected that it is a key to many disparate conditions that afflict us. There is no longer any doubt that this is so.
Posted by: Gary Ogden | January 03, 2017 at 05:22 PM
Keep repeating it John, I am finally catching on, so maybe there is hope for the others that are just as slow.
Posted by: Benedetta | January 03, 2017 at 03:13 PM
...I left out fat moms. Sorry.
Posted by: Anne McElroy Dachel | January 03, 2017 at 01:39 PM
Teresa, as a leading expert on thimerosal, Dr. Boyd Haley, once told me, "If you don't want to find something, look where it isn't."
Since autism is so common and seemingly defies explanation, it has to look like someone somewhere is doing something about it, right?
Ta Da! Endless and inconclusive studies! Over the years we've seen dozen of "autism busywork" findings linking autism to bad genes or bad parental behaviors: old moms, old dads, moms who have babies too close together, moms who smoke, moms who drink, moms who don't take vitamin D, and moms who live too close to freeways. All are designed to leave autism a perpetual mystery we have all the time in the world to figure out.
The press faithfully covers it all.
Anne Dachel, Media
Posted by: Anne McElroy Dachel | January 03, 2017 at 01:37 PM
Gary,
Great you like the research and the Cubbies!
Just wanted to point out that one of those studies I listed on fecal transplants, "Fecal microbiota transplantation broadening its application beyond intestinal disorders" has these comments, which I think are important to see. The mention of vaccines is tremendous :
" The beneficial balance of the intestinal microbial ecosystem can be disrupted by a series of factors, which includes antimicrobial drugs, vaccination, and dietary shifts[3]. Previous studies have suggested that intestinal microbiota alterations have been implicated in many gastrointestinal diseases and even systemic illnesses, such as metabolic diseases[10,11], neuropsychiatric conditions[12], autoimmune diseases[13], allergic disorders[14], and tumors[15]."
"Autism is another condition in which intestinal microbiota is implicated. The onset of autism is often accompanied by intestinal dysfunction[79-81]. The first description of an association between autism and gastrointestinal syndrome began in 1971, with a report that 6 out of 15 autism patients had changed fecal character and defecation frequency[81]. Finegold et al[79] performed an intestinal flora study in regressive autism. It is compelling to observe that there were higher counts of Clostridium and Ruminococcus spp. in the stools of autistic children when compared to those in the control group. Nine clostridial species were found in autistic children, while only three were found in healthy children. The authors further observed histologic changes in the gastric and duodenal specimens. Moreover, significant higher numbers of non-spore- forming anaerobes and microaerophilic bacteria were found in autistic children. Based on the hypothesis that autism involves intestinal microbiota, Song et al[82] characterized Clostridia from the feces of autistic and control children. The data indicate that counts of Clostridium bolteae and clusters I and XI in autistic group are largely greater than those in control children. There was evidence of autistic symptom remission in two children after FMT[49]. Parallel results were also presented in five children who received daily cultured Bacteroidetes and Clostridia for several weeks."
Posted by: Teresa Conrick | January 03, 2017 at 12:19 PM
Teresa: The research you've highlighted at the bottom is so important. It's about time. By the way, I'm a lifetime SF Giants fan, but have always liked the Cubbies, and am happy for their WS win. I once watched an epic 10-inning seesaw battle between the two teams at Candlestick Park.
Posted by: Gary Ogden | January 03, 2017 at 11:45 AM
Hi Benedetta
I always though it was a key point for us. I noticed it in a report by David Kirby and highlighted it more than seven years ago, and have referenced it many times in my articles and comments since. I have always been disappointed and mystified that everyone seemed to leave it to me, when it was something everyone should be repeating and asking about.
John
Posted by: John Stone | January 03, 2017 at 11:37 AM
I did not know that Francis Collins once up on a time said autism was not genetic. Perhaps I did not know exactly who he was at the time; to pay attention to what is position was, and not recognize that that statement showed he was not acting in good in good faith as a public servant should..
Age of Autism contributors;, John Stone, Dan , Laurel Hayes, Teresa, and all the rest have done a great job finding out who is responsible. Showing the readers what are leaders have said, put them under some kind of watch.
That is exactly what the press is suppose to do.
Thank You All.
If only we can get the rest of the nation to wake up. It is not that the American people have short memories, it is I think they never knew to begin with.
Posted by: Benedetta | January 03, 2017 at 10:53 AM
Teresa
Wonderful clip.
11 years ago NIH direcector Francis Collins (when he was head of the Human Genome Project) told Congress that there was an autism epidemic and it could not possibly be genetic in causation because you cannot have genetically caused epidemic. Seven and a half years ago Obama appointed him to the NIH, since when they have done nothing but pursue the genetic explanation which he ruled out + endlessly pointless studies about face recognition etc. We have continued to head up the wrong side of the motorway and many children are being maimed, have their life expectency shortened, their chances having their own children reduced to nothing, and some are no doubt being killed outright. Probably his reign NIH is drawing to a close. I fervently hope he is not replaced by anyone else as deliberately stupid.
http://www.ageofautism.com/2009/11/iaccs-dr-francis-collins-gives-the-game-away-on-autism.html
Posted by: John Stone | January 03, 2017 at 08:45 AM
Thank you. Seeking to focus on genetics serves only to turn the spotlight off of the role of vaccines, GMO foods and other toxins and immunological disruptions in autism. For nearly two decades we have known there is never going to be a medical, single drug cure for autism, which is why a multifactorial approach is critical. Yes, it is the vaccines. Yes it is the gut. Yes it is heavy metals. Yes it is Roundup (R), pesticides, EMFs, and, yes, there is some genetic pre-disposition.
And yes, there are still many of us alternative practitioners in the trenches working to help improve, and even recover kids. We have known the causes for two decades. We have seen organizations and other fellow practitioners come, do good work, then come under attack and fall away. But we are hanging in there because it is the right thing to do for the kids.
The more the hoopla and money wasted on genetic studies, the more the headlines about future "cures" through conventional meficine, the fewer the kids who will get real help, as our voices are further silenced. Parents, don't buy the lies. Your kids can be helped, at any age. And it won't come thru genetics. It comes through nutrition, homeopathy, detoxification, chiropractic, cranial osteopathy, cranio-sacral and speech and occupational therapies.
Never, never, never give up. Your kids can be helped. But you have to dig.
Posted by: Cindy Griffin | January 03, 2017 at 08:12 AM
Theresa .. your closing video was classic.
I could not help but think the passenger who was sleeping as the car .. (a symbol for the CDC) .. was being driven the WRONG WAY into oncoming traffic .. represented Dr Thomas Friedman .. who has been asleep at the CDC since being appointed Director of the CDC in June of 2009 .. and .. the driver of the car representing Paul Offit .. refusing to hear the screaming voices of those trying desperately to warn him of his own STUPIDITY .. callously showing the same arrogant disregard he has shown parents who have witnessed first-hand the death and destruction caused by his recklessness while .. 'DRIVING THE WRONG WAY" .. his entire life.
Posted by: Bob Moffit | January 03, 2017 at 06:41 AM