NIH Autism Regression Study Attempts to Ferret Out Answers
By Katie Wright
Here we go again, the NIH takes one step forward and then, immediately, one step backwards.
The majority of researchers serving on the NIH Regressive Autism Workshop Panel were remarkably unacquainted with regressive autism. Most participants seemed to be only tangentially engaged in this subject. Instead of parents with regressive ASD kids and clinicians like Herbert, Frye, Jyonouchi, professionals who successfully treat kids with regressive autism everyday, the NIH regression panel was stacked with experts in Retts, eye gazing diagnostics, animal models, social psychology and of course (!) genetics. None of the participants seemed familiar with recent very promising autism immunology research. So much time was wasted time asking questions that have already been answered. Even worse so much time was wasted on the extensive discussion of irrelevant scientific issues and conditions.
I am baffled by NIH panelist choices. NO stakeholders involved in any way. No toxicologists, no clinicians…But let me tell you what the NIH Regressive Autism Workshop did offer: an expert in ferret biology! Seriously, a ferret scientist was given a starring role at the regressive autism workshop. I couldn’t make up something so preposterous if I tried.
But listen, I don’t want to blame the ferret scientist. She has never done any autism research but was invited so she showed. Ferrets aren’t the enemy! I like ferrets, I had one as a pet. But why go there when so many incredible scientists who already have great animal models? I bet no one on that panel has even seen Dr. Derrick MacFabe’s “ASD/GI” rat films. His autism animal models are terrific. Rats are a comedown from ferrets, I get it, but MacFabe’s animal models are the best around.
NIH leaders take an almost psychodynamic perspective to autism. Half of the panel discussion revolved around endless learn the signs, eye gazing, face processing, social psychology and other minimally valuable autism research. The NIH must make the connection that recognizing signs of autism does not = treatment, causation information or prevention. It is step 1 out 100. We know the signs, we know the signs, we know the signs and we know what poor eye contact means. We also know it is 2016. The NIH must stop pouring millions upon millions of our research money into face gazing. It is horrendously wasteful.
As part of the psychodynamic/ genetics only paradigm, conference organizers excluded all experts in environmental science and ASD. Incredibly the NIH did not ask one ASD environmental scientist, not a Dr. Van Der Water, not a Dr. Hertz-Picciotto to attend. SO much exciting new regressive autism revolves around the immunology of autism, yet no sign of that on the NIH panel. Forget it, they needed those seats for face gazers and ferret specialists!
Not content to parade their lack of understanding of regressive autism, the NIH panelists insulted affected families in the process. When Dr. Jason Wolff, the only lecturer who shared novel data, spoke repeatedly about “something happening” in the brains of toddlers who would go on to develop autism. Dr. Wolff stated “something happens between 12 and 18 months.” Some conference attendees attributed the loss of skills to “deprived” environments. It is one thing to be ignorant of regressive autism, yet another to blame parents. I remember thinking to myself at the time, “people blurt out stupid things in a moment, things which they might not mean. Others on the panel will correct this person now.” Nope, no correction to this absurd conjecture, just a lot of vigorous nodding in approval!
Great going NIH- bad parenting = autism. Nice way to bring Bettelheim back from the dead. I love how speaking about vaccine injury is forbidden at the NIH, but blaming parents as the cause of their child’s autism is just fine. So much of the discussion was crazy making.
The desire of some researchers to force fit regressive autism into a genetic phenotype was excruciating to watch. The arguments were unsupported and clumsy. Repeatedly participants threw out specious claims that 20% of people with regressive autism have a genetic cause. I want to see that footnote! Naturally none was provided.
Recent research has called into question whether most FX /ASD kids have been falsely diagnosed with ASD. Most importantly, the rare genetic syndromes are such poor models, absolutely awful models, for regressive autism. Regressive autism is an environmentally triggered multifactorial neurodegenerative disease with a postnatal onset. FX. Retts and TS are simple single gene diseases that occur the moment of conception.
A better comparison to regressive autism would be Alzheimer’s Disease, a disease, we have recently found, is also largely immune mediated.
Decades of dead end “autism” FX, TS and Retts research have not helped one child with autism, nor has this research prevented one case of autism. Please, let’s move on! Study our “typical” regressive kids for a change! Study ASD kids without chromosomal abnormalities who develop typically and then regress into autism. Talk to those parents, get the children’s medical records, examine all environmental exposures (neither Baby Sibs nor EARLI is doing this). Talk to parents about the onset about their child’s chronic illness and interventions that have helped and not helped.
Undeterred by their non-stop failure, most in the field still insist on pushing the “genetics first” science, science that ASD families do not support. Dr. Charles Nelson of Boston Children’s has been the recipient of tens of millions of ASD research dollars. Dr. Nelson spoke at great length about the minute details of extremely rare, wholly genetic diseases. None of what he shared was relevant to regressive autism. It was torturous to sit through. In cause you are wondering, here are some of Dr. Nelson’s other ASD research passions: eye gazing, atypical face processing, maternal gestures, maternal depression (blame mom!), maternal vocal feedback (continue as noted), face processing, atypical processing…I mean this body of work is like a wasteland of our ASD research dollars.
Now THAT is the NIH autism conference I want to have next! A conference on forensic accounting of ASD research monies! Why has there been so much waste? Why so many go nowhere multi million dollar projects? Why aren’t the biggest ASD stakeholder organizations like TACA & NAA involved in selecting grants? Who is accountable for green lighting so much pointless failed research? How are these grants chosen? Can we get the money back??
The work of Dr. Jason Wolff of the Univ. MN provided the one truly bright spot of the conference. Finally, novel, relevant and ground –breaking autism science!
Like many of you I suspect, I’ve have had it with brain imaging projects. There seem to be dozens, if not hundreds, of almost identical very expensive ASD brain imaging studies. However, Dr. Wolff’s study = research funds well spent. Finally really exciting POSTnatal science! Wolff stated empathetically there is no autism genotype. Additionally there is considerable data proving some forms of autism are, indeed, POSTnatally determined.
Dr. Wolf found ample evidence of dynamic and dramatic changes in the postnatal brains of babies who went on to develop autism. Babies who become autistic often began life with highly active and highly connected brains. Their brains have higher levels fractional antitrophy. The babies also have larger than average corpus callosums. These children also had more active than usual corpus collosums. According to scores of studies, these measures indicate a higher than average intelligence.
However adults with autism have much smaller than average CCs. Makes sense, the damage has been done.
As Dr. Wolff repeatedly said, “something IS happening between 12 and 18 months,” to these toddlers. I think we all have our guesses! Well I know what happened with Christian, at least. Wolff’s work perfectly dovetails the innovative work of Dr. Richard Deth and Dr. Jill James on ASD and redox . Deth found, so tragically, that the kids who developed regressive autism appeared to have the most connected brains, very likely to be highly intelligent. These delicate, excitable brains are extremely sensitive and suffer extreme reactions to environmental toxins. We are literally mentally disabling our best and brightest.
But what I found most disturbing about the workshop was the near absence of humanity and compassion. At its very essence regressive autism is about a child losing all the skills and abilities that are necessary to lead a fulfilling independent life. These children lose their speech, gross motor function and even the ability to eat and sleep like normal human beings. Some lucky children regain all the lost skills, but most do not. Regressive autism is a catastrophic loss for the child, the child’s traumatized family and our country. It costs a lot to have regressive autism. Additionally the majority of these children have epilepsy, serious GI and immune diseases and most remain profoundly disabled all their lives.
Yet at no time did anyone on the NIH panel express compassion or a sense of urgency to help these children. Instead there was an odd impassivity. Great consideration was expressed from one researcher to another one, but not towards the families they serve. It was as if this workshop was not about human beings at all. I understand that many scientists are not intuitively empathetic or emotionally expressive but does it really take a high emotional IQ person to actually care about helping severely disabled kids?
For me, Kasia Chawarska's talk was the most frustrating one to listen to because it shows that autism experts have allowed Neurodiversity activists and Vaccine Defenders, particularly in cyberspace, to bully, insult and ridicule parents of children with regressive autism for more than fifteen years.
Here's a message posted in 2007 by a psychologist, autism specialist and clinician:
"There is no regressive autism. Period. If there is a regression, involving the lost of previously held skills, then it is not autism (Kanner syndrome or Asperger syndrome, nor anywhere in between)." Then he emphasised the words "delayed or abnormal development..." in the description of autism from this website:
http://www.psychnet-uk.com/dsm_iv/autistic_disorder.htm
"Autism is a developmental disorder that typically appears during the first three years of life and may be the result of a neurological disorder that affects the brain. Autism is classified by the American Psychiatric Association as a Pervasive Development Disorder (APA, 1994). It is defined by symptoms that appear before the age of three which reflect _delayed or abnormal development_ in Language, Social Skills and Behavioral Repertoire." - (Last entry appears to be November 2010 - see Wayback machine)
Eisenberg and Kanner's 1956 paper (PMID: 13339939) referred to by Chawarska in her presentation does not appear on the Neurodiversity.org website and I have not been able to find a downloadable copy not hidden behind a paywall.
What makes me so very angry is that while we have been arguing for years about the existence of regressive autism, the truth is that normal development followed by loss of language and skills has been know about for _60 years_. There have always been two paths to autism. Simon Baron-Cohen, Tony Attwood, Uta Frith, Michael Rutter, Eric Fombonne must know it and Lorna Wing must have known it, so the question is: why haven't they discussed the reality of this type of autism with the media, Neurodiversity activists, and especially with people like Paul Offit?
Not only have experts ignored the cries of parents who've watched their normally developing children lose skills and develop autistic behaviour before their very own eyes, the experts remove Childhood Disintegrative Disorder from the most recent DSM - which, if not for the first criterion "normal development for at least the first 2 years" many of our children would have met the diagnostic criteria; they place all autisms under one gigantic ASD umbrella, and _then_ hold a conference to discuss Regressive Autism when at some point along the way they've realised that up to 80% of children, diagnosed with ASD, regressed.
Now, according to the psychologist, mentioned above, none of the 80% of children diagnosed with ASD has autism but Heller's syndrome/CDD or Disintegrative Psychosis which were the conditions Dr Wakefield discussed in his 1998 case study.
What would have happened if our children had been diagnosed with CDD/Disintegrative Psychosis instead of autism? Would more parents have questioned the diagnosis, and would the children have undergone testing for heavy metal toxicity?
http://patient.info/doctor/childhood-disintegrative-disorder-hellers-syndrome
And furthermore, would anyone be wanting to celebrate their condition?
==========
Rough partial transcript:
Regression in Autism Spectrum Disorders
Kasia Chawarska, Phd (Yale School of Medicine Child Study Center)
"When Kanner described autism for the first time in 1943, he noted that all children in his sample exhibited symptoms already after birth and he considered autism to be an innate disorder, and that was it.
However, about a decade later, Eisenberg and Kanner in 1956 published another paper in which they revised their idea about developmental trajectories in autism. They found a group of children who were actually, seemingly, developing typically until about 18 or 20 months when they lost language. And so they described this phenotype of autism related to regression and they suggested that there were two ways in which children became autistic - one of them with innate difficulties, another with some loss of skills. This was sixty years ago."
"Typically, the reports regarding the timing of onset would place regression, sometimes between 12 and 24 months, with a median at around 18-20 months, but we know that there are cases of regression when loss of skills occurs in the first year of life or loss of skills occurs later, in the second/third year of life."
When we think about regression we typically think about language - loss of language - and this is the classic area that Kanner highlighted 60 years ago. And many many studies focus on loss of first words, loss of phrase speech and documented that phenomenon in autism. However, there are other studies which suggest loss of non-verbal communication, gestures most specifically, as well as loss of social engagement behaviours - behaviours involving eye contact, social smiling, reciprocal communication, enjoyment in social interactions, and so forth."
"Prevalence of regression is quite broad. If we think strictly about regression with regard to loss of language, the numbers are about probably 15 to maybe 20%. However, when we look more broadly into loss of social skills - social behaviours - this number goes up to up to about 40-50%. If we look at very young children and we study them prospectively, signs of loss of skills is actually present in the vast majority of these children, as many as 80%."
Posted by: ATSC | March 14, 2016 at 09:43 AM
Almost all politicians (like Americans) were vaccinated as children, hence have some degree brain damage, except for G.W. Bush, who was not vaccinated because his family “does not do vaccines” - as he stated. Still Bush was the most stupid and evil of all presidents (next to his father). Trump is talkative, but is bright, energetic, decisive, savvy, and is not psychopath like Clinton, Rubio, or Cruz. Sanders is not acceptable for me, as he would destroy middle class even more by introducing totalitarian laws and decrees, while Clinton would take us to more wars – what she promised. Both of them believe in mandatory vaccination of all children do death. We simply have no alternative to Trump, he is our best man for this time. Besides, Trump knows and publically said that vaccines cause autism. None of the candidates, except for Trump, understands that when you poison entire population with toxic vaccines, very soon you are going to have no country. Therefore for me, my family and friends there is nobody else, but Trump.
Posted by: no-vac | March 12, 2016 at 10:47 PM
N Davis
You'v got to be joking:
Psychiatr Genet. 2016 Apr;26(2):74-80. doi: 10.1097/YPG.0000000000000121.
Parents' attitudes toward genetic research in autism spectrum disorder.
Johannessen J1, Nærland T, Bloss C, Rietschel M, Strohmaier J, Gjevik E, Heiberg A, Djurovic S, Andreassen OA.
Author information
Abstract
OBJECTIVE:
Genetic research in autism spectrum disorder (ASD) is mainly performed in minors who are legally unable to provide consent. Thus, knowledge of the attitudes, fears, and expectations toward genetic research of the parents is important. Knowledge of the attitudes toward genetic research will improve cooperation between researchers and participants, and help establish confidence in ASD genetic research. The present study aimed to assess these attitudes.
MATERIALS AND METHODS:
Questionnaire-based assessments of attitudes toward genetic research and toward procedures in genetic research of n=1455 parents of individuals with ASD were performed.
RESULTS:
The main motivation for participation in genetic research is to gain more knowledge of the causes and disease mechanisms of ASD (83.6%), and to contribute toward development of improved treatment in the future (63.7%). The parents also had a positive attitude towards storing genetic information (54.3%) and they requested confidentiality of data (82.9%) and expressed a need to be informed about the purpose (89%) and progress of the research (83.7%). We found a slightly more positive attitude to participation in genetic research among older parents (P=0.015), among fathers compared with mothers (P=0.01), among parents of girls compared with boys (P=0.03), and infantile autism compared with Asperger syndrome (P=0.002). However, linear regression analysis showed that parent and child characteristics seem to have too small an influence on attitudes toward genetic research to be of any relevance (R=0.002-0.02).
CONCLUSION:
Parents of children with ASD have, in general, a very positive attitude toward genetic research. Data confidentiality is important, and they express a need for information on the purpose and progress of the research.
Posted by: John Stone | March 12, 2016 at 05:31 AM
Katie, do you have access to Psychiatric Genetics? The authors of a new study in that journal wrote this: "Conclusion: Parents of children with ASD have, in general, a very positive attitude toward genetic research."
?
http://www.ncbi.nlm.nih.gov/pubmed/26867185
Posted by: N Davis | March 11, 2016 at 09:34 PM
Benedetta -
From accounts of others whose children regressed, it seems like the vaccines given around 12 to 18 months may affect brain maturation differently than for children like mine who suffered injuries at birth. Many seem to lose the ability to speak, but retain understanding. This is apraxia, which is maybe more similar to Broca's aphasia in adults.
As for echolalia in adults (like your mother), I have seen at least one case in the medical literature, described as a disconnection of the language areas from other systems in the brain. This also would be different from echolalia as a disability of maturation.
Language and its connections to other areas of the brain is complicated, but also interesting. Why aren't researchers more interested??? Instead they flub around with terms like neural pruning, etc. I am not going to look at anything else presented at that conference, and I am very grateful for Katie's summary of it.
Posted by: Patience (Eileen Nicole) Simon | March 11, 2016 at 08:52 PM
Keep your damned Ferret Scientist NIH and GO TO HELL!!!!!
Posted by: CS | March 11, 2016 at 06:19 PM
Eileen;
This echolia speech, hmmmm I wonder if it is totally different.
My son was saying by the age of five months pumpkin, and 7 months Christmas tree - the most notable.
The after the vaccine reaction, he could speak those few words, he could string some together if I pressed and pressed. He could go months without uttering a word if I let him.
WIth my son to get a complete detail of what a Mother craves to know about her son's day, what happened to him in school -- forget it
However; I did run into later in life, echolia - when my 83 year old Mother ended up in the hospital with a kidney stone, full of infection.
Posted by: Benedetta | March 11, 2016 at 10:49 AM
It sounds like the NIH and CDC are your countries worst enemies. They're trying to confuse people and do everything they can to hide the truth.
Posted by: Susan | March 11, 2016 at 10:35 AM
In 2014, I attended the Autism Symposium at Harvard Medical School where they talked about everything autism, but never mentioned vaccinations.
http://www.autismconsortium.org/research-symposium
These are some of the most brilliant minds in the world and they depend on grant money to fuel their research and keep their jobs. They know that if they speak out against vaccinations, they would likely be "Wakefielded" and kiss their careers good-bye.
I would not be surprised if they express very different opinions in private, especially since some of their own children have autism. I suspect that many of the "leaks" of inside knowledge we get comes from sources such as this.
Posted by: Citizen Scientist | March 11, 2016 at 10:24 AM
Teresa, thanks for the link. So far I have watched the first rather muddled presentation on language, face processing, and pruning hypothesis. The speaker did adequately describe two stages of normal speech development: Telegraphic speech (monosyllabic words), then early use of grammatical transformations (plurals and tense), like "Mommy go-ed store." Then off she went into the forest of brain imaging etc...
True regression would follow use of monosyllables, which reveals a child's ability to hear word and syllable boundaries (as described by Roger Brown in his 1975 book, A First Language). Use of grammatical transformations (plurals and tense etc) is a capability unique to the human species, but normal development follows comprehension of word and syllable components.
My question for parents would be whether, before vaccination, telegraphic speech plus primitive grammatical transformations were acquired, then lost? Or did your child begin speaking in phrase fragments?
My son Conrad never used telegraphic speech. From the beginning his speech was fluently echolalic. Everything he said were verbatim recitations of things he heard in one situation, then applied badly out-of-context in new situations, like: "Oh Conrad, did your green pistachio ice cream fall on the sidewalk?" Kanner referred to echolalia as metaphorical speech (1946), and he had to ask the parents for the meanings of these metaphors.
Research on regression following vaccination should be demanded, but I will continue to point out the clear medical error of clamping the umbilical cord immediately after birth. Even babies who cried without delay may have begun lung function at the expense of blood drained from other organs, the brain and/or GI system. Then hep B and vitamin K are injected, compounding damage to the blood donor organs.
Posted by: Patience (Eileen Nicole) Simon | March 11, 2016 at 08:27 AM
@ Teresa Conrick
Yes, I do understand the subtlety of your comment.
@ Katie Wright
About eighteen years ago I took our non-autistic child to a consultant for a standard medical condition. This person asked questions about the health of other siblings. When I spoke about what (allegedly) happened to my autistic child, I was informed "you're an intelligent woman, Mrs X, you know this sort of thing goes on". Many doctors know what's going on - they're hoping that it won't land on their doorsteps to ruin their careers.
Thank you for all you're still trying to get done on behalf of children with autism spectrum disorders.
Posted by: British Autism Mother | March 11, 2016 at 04:24 AM
@ Teresa Conrick
"Almost like hiding it from those of us in the know ....."
Please see my posting below yours at 4.45 p.m. IMHO there's no "almost" about it - it's all part of the monstrous cover-up. How much time did the authors spend trying to avoid using the words "regression/regressive"?
I don't suppose I can really blame them - after all, we all know what happened to a certain doctor who merely asked for more research to be carried out on a certain vaccine .....
Posted by: British Autism Mother | March 11, 2016 at 04:04 AM
Thank you, Katie for writing about this bizarre conference. I saw it in a google alert and thought how odd that the title did not have the word REGRESSION -- "Loss of Skills and Onset Patterns in Neurodevelopment Disorders: Understanding the Neurobological Mechanisms". Almost like hiding it from those of us in the know.....
It's a sham on many levels and I thank you for bringing it up!
Here it is to watch in it's excruciating entirety.
http://videocast.nih.gov/summary.asp?Live=18173&bhcp=1
Posted by: Teresa Conrick | March 10, 2016 at 07:59 PM
Katie, thank you as always for finding out about presentations like this one. I have submitted a few comments already for the IACC meeting in April, and asked that they be discussed by people who are medical school graduates, and preferably specialists in neurology. Sadly, autism is a neurological disorder.
Oculomotor injury can account for lack of "eye contact." The face-processing center of the brain was discovered by fMRI about 15+ years ago, an interesting human capability, but overdone in trying to understand "social disorder."
Regression was first described by WM Landau and FR Kleffner in 1957. I did not read much more, because my first son had delayed development, and my second son, Conrad, began speaking early, but from the beginning used echoed phrases. He did not develop aphasia or seizures, thus I went no further looking into regression.
I remember Wolff's presentation at IMFAR in Toronto, and I believe that his description of maturational failure fits what happened to my first two sons. Both were born physically perfect, but injured during birth. That's why the evidence of auditory system damage caused by asphyxia has been of greatest interest to me.
WM Landau also worked with SS Kety, and was part of the team who discovered that blood-flow is higher in the auditory system than anywhere else in the brain. Maturation of the language areas of the cerebral cortex is dependent upon intact functioning of the brainstem auditory pathway.
I continue to try to improve my ability to communicate what I have learned in my 50+ years trying to understand autism. It is sickening to watch young researchers fumble around without any knowledge of excellent research in the past that they should be building on.
Posted by: Patience (Eileen Nicole) Simon | March 10, 2016 at 07:45 PM
Dr Wolff stated, "something happens between 12 and 18 months".
Like chronic microglial activation, mitochondrial meltdown, ensuing encephalopathy leading to the biochemical/neuroimmune trainwreck known as autism? Just plain pathetic, period. Thank you for reporting on this never-ending travesty, as incredibly hard as it must have been to witness.
Posted by: dnj3forever | March 10, 2016 at 05:59 PM
Linda1,
"There are tens of millions of Americans who are under the impression that government committees are staffed by qualified experts."
Typically (not always), that's true. If non-experts are on the panel, that reflects sloppy work by the Panel coordinator. The issue is usually not one of expertise, but rather to what ends the Panel members apply that expertise.
In my own experience, most of the panels with which I've been involved have been laden with expertise, and used it appropriately. But, the vast majority of these panels were in the physical sciences, engineering sciences, and a few in environmental sciences. The science and engineering is rather straight-forward, and can be validated.
I don't have much hands-on experience with the biomedical. From what I've read, the objectivity in some/many biomedical panels can be questionable. When the issue is one of identifying contributing factors to disease, with all the potential liability and profits that entails, the political analysis can outweigh the technical analysis.
The only way to insure the biomedical advisory panels are above board is for the highest level person responsible for the panels to require they be objective. For e.g. the NIH or FDA or ..., the highest level people are Presidential appointees, confirmed by the Senate. Thus, the President has to select the type of person who would insist on objectivity, and, in this day and age, there would need to be sixty Senators who would confirm that type of person. Given that no Presidential candidate has made that an issue, and none of the Senators have given any support to e.g. Posey's request for a Congressional Hearing on Thompson's testimony, we are essentially starting from ground zero. Any ideas on how to accomplish this would be welcomed.
Posted by: Ronald Kostoff | March 10, 2016 at 05:51 PM
Using toxicologists would mean that someone actually tries to find out. Same with pathologists. But they only work on dead people.
It's been a longstanding fact that medical doctors do not concern themselves with poisons. As long as they don't know the subject they'll never be accused of having performed a criminal act by poisoning their patients.
Posted by: Birgit Calhoun | March 10, 2016 at 05:03 PM
Please try to remember that the older phrase is "acquired autism" and that this has been sanitised from the record so that modern searches under "regressive autism" only turn up comparatively new research. Just try googling the phrase "acquired autism" to see what I mean. It's all part of the monstrous cover-up .....
Posted by: British Autism Mother | March 10, 2016 at 04:45 PM
I thank the Heavenly Stars that sites like AoA, and the amazingly number and variety of contributors, that keep me sane, I say this, despite hearing and knowing of the terrible damages and death so many personally relate, and has happened way too much to my family.
I stay sane BECAUSE we here on this AoA site (and many others): I realize I am not "crazy" about the vaccine-caused catastrophe upon us.
Many of my extended family and friends think I am (crazy), as they've been so brainwashed and indoctrinated, reinforced by the constant Mainstream Media echoing the NIH/CDC Predators.
Katie Wright, you are an icon, a hero, a heroine, and I cannot thank you enough.
Posted by: david m burd | March 10, 2016 at 03:40 PM
"Yet at no time did anyone on the NIH panel express compassion or a sense of urgency to help these children. Instead there was an odd impassivity. Great consideration was expressed from one researcher to another one, but not towards the families they serve. It was as if this workshop was not about human beings at all. I understand that many scientists are not intuitively empathetic or emotionally expressive but does it really take a high emotional IQ person to actually care about helping severely disabled kids?"
God bless you, Katie, for looking into this. I couldn't sit through this myself.
My question: Did any expert/official use the word "crisis" when talking about autism? Or was it more like a discussion of a medical curiosity we have all the time in the world to figure out?
For over a decade I've been following government announcements on autism, and I'm still waiting for someone to call autism a "crisis."
"Serious public health concern" is the strongest language anyone has used to describe autism.
No one really wants to look for common denominators when it comes to regressive autism, like the round of vaccines that the child received within days of getting sick.
Regressive autism is of course Hannah Poling's story. She received nine vaccines in a single doctor's visit in 2000 and shortly afterwards she began her descent into autism. Medical experts at HHS conceded that her vaccines caused her autism.
http://www.huffingtonpost.com/david-kirby/government-concedes-vacci_b_88323.html
Regression following vaccination is also the story of thousands of other children. It would be a little hard to really get into regression without having to talk about vaccines. So much easier to bring an expert on ferrets.
Anne Dachel, Media
Posted by: Anne McElroy Dachel | March 10, 2016 at 03:36 PM
The regime sponsored scientists will never ask proper questions and conduct proper studies related to autism epidemic, because they are cosponsored by pharma cartels. And they all remember what happened to use of HRT in menopause after big study sponsored by the public and demanded by Congress during dr. Bernardine Healy directorship at the NIH. It definitely proved that HRT is killing women by heart attacks, strokes and cancers - hence HRT use plummeted and women survival increased. The pharma cartels and the regime which serves them would never allow he same to happen to vaccines, which kill and maim millions of children for profits. Trump is the only hope for national survival. Clinton, if elected, would continue genocidal vaccination policy. We should also consider huge rallies in front of NIH with participants demanding proper studies. At rallies in front of the Congress we should demand cutting down NIH funding with our tax money, as it is wasted and used to manipulate, kill and cripple people rather than heal.
Posted by: no-vac | March 10, 2016 at 02:12 PM
There are tens of millions of Americans who are under the impression that government committees are staffed by qualified experts. No mainstream media outlet will examine credentials and report otherwise. Shining a bright light on this governmental fraud in articles like this is extremely important.
Posted by: Linda1 | March 10, 2016 at 01:23 PM
Thank you, Katie, for this report. I wish we had the funding to independently fund the good apples before (or when) they are expelled from the barrel of rot. I have to think most good researchers cannot love their jobs in today's "deprived" (of character) environment and would do much more to bypass the federal/corporate agendas and accelerate our understanding, if empowered.
Posted by: Jeannette Bishop | March 10, 2016 at 01:16 PM
Then why is a listed as one of the possible side effects of this vaccine package insert from the gov. 'AUTISM'?? http://www.fda.gov/downloads/biologicsbloodvaccines/vaccines/approvedproducts/ucm101580.pdf They are just trying to burry the truth, cover it up! A bunch of evil, greedy liars!
Posted by: CS | March 10, 2016 at 12:22 PM
Hi Ronald
I think one has to allow writers a certain level irony. Katie is entitled to say she is baffled. Of course, she knows the committee has been packed with men (and women) of straw and that policy is being deliberately misdirected.
Posted by: John Stone | March 10, 2016 at 12:04 PM
Thank you so much Ms Wright for all you do!!!!!
Posted by: Annie | March 10, 2016 at 11:48 AM
Katie,
"I am baffled by NIH panelist choices. NO stakeholders involved in any way. No toxicologists, no clinicians "
Why are you 'baffled'? These myriad panels are generated for a purpose: to rubber-stamp what the government wants done! Note that I didn't say what should be done, what must be done, or what needs to be done.
The NIH, and the other major Federal performing and sponsoring agencies, have vast amounts of in-house and contractor expertise on which they can draw. Their personnel attend meetings globally, and have periodic contractor workshops/reviews. Typically, they are well-versed in the state-of-the-art, know exactly what the problems are, and know what needs to be done. They don't need expert panels to tell them what to do! But, because of the Agencies' central role in the Government-Industrial-Media Complex (GIMC) that controls this country, the Agencies' official position is what the GIMC wants.
So, to present their Government positions as certified independently, the Agencies generate hand-picked advisory panels and/or fund so-called 'think tanks' to generate the desired conclusions and recommendations. They will select a Chairperson with high expertise and the 'right' credentials (and, more importantly, the 'right' perspective), the Chairperson will select the 'right' panel participants, and the end result will be a 'distinguished' report just happening to coincide with what the Agency really wants.
I've seen a number of posts on AoA questioning the makeup of myriad panels related in some way to autism. The authors of these posts are spinning their wheels. There are many ways to construct a panel to generate a desired result. The sponsors could remove every person with a documented conflict of interest, and still arrive at a group of people who would be more than willing to provide exactly the recommendations desired. The main conflict of interest that can't be measured is 'intent'. If a prospective panelist believes their involvement will increase their chances of future funding, they would be a willing participant.
Now, there are many advisory panels for Government agencies, and many participants. For those topics that have minimal commercial or political sensitivity, I would expect the recommendations to be very credible. But, for autism and other highly sensitive topics, my expectations for objectivity would be very low.
Posted by: Ronald Kostoff | March 10, 2016 at 11:40 AM
Katie, thank you for covering this!
All I can say is OH. MY. GOD.
The NIH is a complete waste when it comes to autism.
Our community needs to find independent funding to do proper regressive autism studies (surely there are ethical people out there somewhere who would be willing to fund groundbreaking research that would save the suffering of millions?!). The government will NEVER do them. They are too busy milking funds and covering their pathetic asses.
Posted by: AnneJ | March 10, 2016 at 11:05 AM
You know we are all sort of snobs as we look back on history y and think how can they could have been so dumb.
Doctors in child birth don't even wash their hands. How much you want to bet they all know it, but it was the people in power that did not want to acknowledge it. They would then have to acknowledge that the doctors they were training were a nasty lot.
Just like clean water that meant the ruling elite would have to take the taxes and pay for better systems that the elite in the England way back would rather spend on lavish houses.
Now the history is going to make fun of us about over vaccinating, OH how could they have not understood this.
My lesson is learned; when things go on bad for a long time there is evil afoot in the world, not ignorance.
Great writing Katie, keep up the good work and don't ever give up.
Posted by: Benedetta | March 10, 2016 at 11:00 AM
Thank you, Katie - for this post and all your previous posts. I always enjoy reading your thoughtful writing.
I too have been baffled by the lack of empathy and compassion for our kids and ASD families. I wonder why this is the case? There seems to be empathy, sympathy, compassion, and urgency for kids and families struggling with other kinds of medical disorders.
Posted by: Aimee Doyle | March 10, 2016 at 10:39 AM
Thank you for attending Katie. I couldn't sit through even one meeting like this. So much waste and no urgency at all. They all seem so disconnected from our world....too bad we can't tie their salaries to any results that actually help our children/young adults. Maybe that would be motivation for them!
Posted by: Jill | March 10, 2016 at 10:34 AM
Katie,
Thank you for this insightful, perceptive post. One day, this nation will look with horror at how our children and families have been grossly mistreated and misunderstood. I do not understand how the medical and government powers that be can look at themselves in the mirror or sleep at night.
I pray for justice everyday. Keep up with the great reporting, you keep me going.
Posted by: 2asdmom | March 10, 2016 at 08:49 AM
The NIH is a disgrace and the people on it should be removed and replaced by ethical researchers and those who have a BRAIN about what is happening to our kids! No wonder nothing has happened in the 25 years since my son was diagnosed. Blaming parents is going back to the dark ages and at this rate our children will never have any hope of recovery.
Posted by: Gayle | March 10, 2016 at 07:49 AM
The same ghastly parade - life (so to speak after) Insel. Thank you Katie for having the patience to witness this and report.
John
Posted by: John Stone | March 10, 2016 at 07:12 AM
"Who is accountable for green lighting so much pointless failed research? How are these grants chosen? Can we get the money back?"
Using Poul Thorsen as our guide .. we not only can't get the money back .. we can't even get Thorsen back.
Posted by: Bob Moffit | March 10, 2016 at 06:10 AM