Autism Research: A Breath of Fresh Air

With all the words that are spilled and all the debates that rage over autism cause, cure, treatment and research there is little discussion, let alone effort, to actually find and prove new treatments and cures for autism disorders. It is a breath of fresh air to learn of some autism research that is actually being conducted with a view to HELPING autistic persons FUNCTION better. Such news is seldom heard.

One of the funders of the study is Autism Speaks which often takes heat from all sides in the world's autism communities. Well done Autism Speaks and other funding agencies involved in this effort. Hopefully more research aimed at actually helping autistic persons function better will be conducted in the near future.

Jill Cornfield at Autism Vox has highlighted research by Seaside Therapeutics LLC of a drug that may help autistic persons communicate better. The Seaside Therapeutics LLC press release indicates that it has received $30 million dollars in funding to conduct the study, which builds on the work of Seaside scientific founder Mark Bear of MIT, and explains the theory and aim of the study:

Historically, drug discovery in disorders of brain development has been unproductive largely due to the lack of mechanistic understanding of these disorders, as well as the absence of predictive animal models. Seaside Therapeutics is changing this paradigm through scientific exploration that focuses on identifying the fundamental pathophysiology of brain development disorders and applying this knowledge to develop targeted therapeutics. Recent discoveries by the Company's scientific founder, Mark Bear, Ph.D., Howard Hughes Medical Institute Investigator and Professor of Neuroscience at M.I.T., have revealed a molecular pathway, the mGluR5 signaling cascade, that is disrupted in a specific disorder of brain development - Fragile X Syndrome. With this knowledge, further research has provided insights for developing novel medications to normalize the function of this pathway, which Seaside believes may extend beyond Fragile X into a number of other developmental disorders, including autism.

STX209 is a selective gamma-amino butyric acid type B (GABA-B) receptor agonist. STX209 inhibits glutamate signaling in the brain and should thereby indirectly inhibit the excessive metabotropic glutamate receptor (mGluR) mediated protein synthesis implicated in Fragile X Syndrome. Preclinical studies using STX209 and other prototypic GABA agonists have demonstrated efficacy in animal models of Fragile X, suggesting that GABA agonists may provide significant benefits to people with Fragile X Syndrome and other disorders of brain development. STX209 entered a Phase 2 clinical study in adults and adolescents with Fragile X in December 2008 and a second trial in adolescents with autism spectrum disorders was initiated in March 2009. Seaside intends to expand both studies to include children as young as 6 years old during 2009. Data from both Phase 2 studies is expected in the first quarter of 2010.

STX107 is a highly potent, selective mGluR5 antagonist that was licensed from Merck & Company, Inc. STX107 was selected for development based on Dr. Bear's discovery of the connection between mGluR5 signaling and Fragile X Syndrome. Specifically, the evidence suggests that most, if not all, of the neurological and psychiatric consequences of Fragile X can be accounted for by exaggerated signaling through mGluR5 receptors. Preclinical research indicates that normalizing this exaggerated mGluR5 signaling reverses most of the anatomic, behavioral and synaptic abnormalities associated with Fragile X. By directly inhibiting exaggerated mGluR5 signaling, STX107 provides a compelling opportunity to treat core symptoms and disabilities of Fragile X Syndrome, autism and other developmental disorders. Seaside has been awarded translational research grants to support the development of STX107 from the National Institute of Mental Health, the National Institute of Child Health and Human Development, the National Institute of Neurological Disorders and Stroke, Autism Speaks, FRAXA and the Best Pharmaceuticals for Children Act. STX107 is expected to enter Phase 1 clinical studies in healthy volunteers in October 2009.

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Important Autism Reminder: There Are Autistic Persons Living In Institutional Care, Let Us Not Forget Them

It is a fact that does not appear to have permeated the consciousness of CBC and other mainstream media but there are autistic persons living in institutions in Canada. These autistic persons are not likely to appear on CBC television proclaiming that they do not want to be cured. They will not appear on CBC television proclaiming the joys of being Posautively Autistic. For that the CBC's autism journalism dilettantes would have to actually visit such an institution and observe these autistic souls and their actual lives. Pretty scary stuff for the CBC autism journalists who prefer to get their autism education at a Toronto art gallery autism project.

The CBC would prefer to ignore the severely autistic and feature repeated interviews on CBC TV and radio with their favorite autistic person, High Functioning Autistic, Michelle Dawson. If need be they will go to the US and speak with persons with Aspergers Disorder like Ari Ne'eman Washington Insider and self appointed spokesperson for all persons with autism even though his diagnosis is actually Aspergers Disorder. But our delicate autism journalists at the CBC will not visit the institutions in Canada or the US where severely autistic persons live out their existence when parents die or can no longer care for them.

The bottom photo is the Restigouche Regional Hospital in Campbellton, New Brunswick and the top shows the Centracare facility in Saint John New Brunswick. I have visited both facilities and seen what life means for autistic persons in institutional care. If the CBC and its intrepid journalists need directions I would be happy to provide them. I will not hold my breath waiting for the CBC to realize that Michelle and Ari and Alex and Amanda and Estee do not present a full view of the autism spectrum. I will not wait anxiously for the CBC to seek direction to the facilities shown above.

I will ask anyone reading this blog though to remember the autistic persons living in institutional care. For them life is not Posautively Autistic.

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Autism Reality Is Not Always Pretty

"Kicking Momma, Hurt Momma, Sad"

The comments above were reported to have been made by Sky Walker, severely autistic 18 year old, after being arrested for assaulting his mother, Kent State University professor Trudy Steuernagel, who died eight days later. This past week, as reported by the Cleveland Plain Dealer , both defense and prosecution attorneys at a competency hearing for Sky Walker accepted an expert report which concluded that he was not competent to stand trial.

There will always be some persons with Aspergers or High Functioning Autism standing before a camera defining autism by reference to their personal circumstances. Claims will continue that historical geniuses from every walk of life were autistic. The latest keyboard technology or internet program will appear on Google searches as magic solutions for autism disorders. And of course there will be those who claim, despite the existence of autism disorders in the DSM and the ICD, that autism disorders are socially constructed disorders not medical disorders and some will continue to claim that autism disorders are not disorders at all. None of these accounts will deal with some of the harsher realities faced by the more severely autistic, including the harsh realities of Sky Walker and his deceased mother Trudy Steuernagel who, by all accounts that I have read, loved her son dearly and would not hold his actions against him.

Unfortunately it often takes tragic events like those involving Sky Walker and his mother to break through the media insistence on glorifying autism and catering to a minority who wish to portray autism as a difference not a disorder. The acceptance by defense and prosecution attorneys make it more likely that the trial judge hearing the case will rule that he is not competent to stand trial.

Fortunately for Sky Walker, and I suspect his departed mother would agree, the court is considering expert evidence of the realities of Sky Walker's autism ... not the feel good glossy version portrayed in Neurodiversity rhetoric and glossy media fantasies.

Autism reality is not always pretty.

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Why Autism? An Excellent Question

"at this moment some one with autism is being born, the question is W H Y"

Kevin Fox, UK autism dad, posted on facebook

Hopefully, some day in the not too distant future, researchers and public health authorities will ask themselves the question Kevin Fox asked on facebook. WHY autism? Simply assuming that autism is 100% genetic is not science. It is long past time for the "it's gotta be genetic" mindset identified by Teresa Binstock in 1999 to be put aside and research conducted to understand all of the causes and triggers of autism - genetic, biological and environmental. If those causes or triggers include vaccines or vaccine ingredients then so be it. This parent, and most parents, want to know why their child has an autism disorder. With numbers of autism diagnoses rising society has an interest in knowing W H Y.

Why autism is a question which remains unanswered. Public health authorities and researchers who are afraid to explore all possible answers to that question for fear that the answer might point to vaccines, or to industrial products, should step aside and let real scientists and researchers, those with open minds and without conflicts of interest weighing them down, do the necessary research to answer it.

Why autism? Let's get busy and answer that excellent question.

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Offit and Insel Fear Real Vaccine Autism Research

I am a neutral in the vaccine autism war. I have NOT concluded that vaccines or their ingredients cause, or trigger, autism but I do believe that the claim that science has conclusively proved that there is no vaccine autism connection does not hold water. I am also increasingly puzzled by, and concerned by, the opposition of the IACC and persons like IACC head Dr. Tom Insel and vaccine inventor and consequent multimillionaire Dr. Paul Offit, to conducting an observational study comparing autism rates between vaccinated and existing non vaccinated population groups.

The criticisms of the studies cited in support of the position that a vaccine autism link has been conclusively disproved by science have been covered elsewhere in detail and are well known. The most obvious example is the Danish study, conducted after prodding by US health authorities, which examined autism rates from 1972 to 2000 with the diagnostic and social changes that took place over that time period, including the addition of different population groups to the Danish database during different years. The study authors themselves stated that the study did not prove a negative vaccine autism relationship.

The most serious flaw in the position that science has disproved any possible vaccine autism connection is that NO studies have compared autism rates between vaccinated and non vaccinated population groups. What is most surprising is that people like Dr. Paul Offit and Dr. Tom Insel, especially Dr. Insel, oppose such a study. Given their opposition to such a study, and the lack of a persuasive rationale for their opposition, it is difficult not to conclude that the good Doctors Offit and Insel are afraid of what such a study might show.

Dr. Bernadine Healy, former NIH head, has stated that the epidemiological studies relied upon by authorities to argue against a possible vaccine autism connection are not specific enough to address the effects of vaccines on vulnerable population subsets. She has also argued that an observational study comparing autism rates amongst vaccinated and existing non vaccinated groups COULD and SHOULD be done. Dr. Julie Gerberding, until recently the CDC head, also has stated that the observational comparative study could and should be done. Even Dr. Duane Alexander of the recalcitrant IACC has stated that the observational comparative study could be done.

Teresa Binstock noted in 1999 that funding was available for autism research only if the research proposal examined genetic bases of autism, the "its gotta be genetic " model. In 2004 the IOM expressly discouraged funding of vaccine autism research. Today parents and professionals, as predicted by Binstock, are vilified in the mainstream media (and by attention seeking bloggers like Orac) for even discussing the possibility of a vaccine autism connection. Dr. Paul Offit has been waging an increasingly emotional campaign for several years as a result of which parents are marginalized and dissident professionals are branded as dangerous. Dr. Insel's IACC engaged in agenda and procedural games to reverse its own decision to examine vaccine autism research and the good Dr. Insel testified somewhat bizarrely in front of Senator Harkin's committee that an observational comparative study could not be done.

Substantial sums of money have been poured into genetic based autism research over more than 10 years based on the "its gotta be genetic" funding mindset identified by Teresa Binstock, with no hope of finding cause or cure from such research. It seems very weak to suggest that some of that funding could not be diverted to funding an observational comparative study of vaccinated and non vaccinated groups.

The only reasonable conclusion left to be drawn is that Dr. Tom Insel, Dr. Paul Offit, and other public health authorities who refuse to consider funding of an observational comparative study, are afraid of what the results of such a study might show - that non vaccinated groups have significantly lower autism rates than vaccinated groups.

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Zero Days to School and Conor is Happy

Knowing how anxious he would be to get to school today we had Conor's school bags and sports equipment packed and ready to go this morning. And Conor was happy to be going back to middle school. In the bottom picture Conor and Mom head off to the Nashwaaksis Middle School. Conor is the "slightly" taller one on the left.

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Perfect Weekend

This was a perfect long weekend in Fredericton. Conor and I enjoyed it, as always, by walking the trails in our town and enjoying the fresh air, sunshine and sights.

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ABA and Autism's Biggest Myth - Conor Counts the Days to Middle School

Conor has been counting down the days to school much of which is based on ABA (Applied Behavior Analysis) instruction in a room alone with an ABA trained (UNB-CEL Autism Intervention Training) Education Assistant. Conor loves school, including his ABA, as I have written about several times.

Today at about 6:30 am Conor came and got Dad to tell me "2 more days to Middle School". He has been asking about (Nashwaaksis) Middle School for the past few weeks. Some mornings he gets up and grabs his school lunch bag off the top of the fridge (top picture, above) telling us clearly that he wants to get back to school. He has also been joking about school, making comments about Conor going to Nashwaaksis Memorial where he attended grade school. When we agree he laughs and says "Noooooooo Memorial ... MIDDDDDLE School!".

The bottom picture, above, is a re-post of a perfect attendance record from his first year at Nashwaaksis Middle School, 2 years ago. Last year Conor missed a couple of days because of flu and because of a dental operation so he didn't get the perfect attendance certificate but he still came pretty close.

Those who allege that ABA turns children robotic, or is otherwise abusive, are creating a myth, Autism's Biggest Myth. They have no evidence, no studies, on which to base this myth. It is just the opinion of people with very little real exposure to ABA. Conor has loved the ABA instruction he has received. Because of the determined Autism Advocacy of some dedicated parents here in New Brunswick and a government that listened, both to parents and to the decades of research supporting the efficacy of ABA as an autism intervention, Conor has been able to receive ABA based instruction in school for the past several years ... and he loves every minute of it.

To Michelle Dawson and other spreaders of Autism's Biggest Myth ... you are wrong .... and you have nothing to back up your prejudiced opinions about ABA. Your opinion about ABA effectiveness is rebutted by hundreds of studies and dozens of credible professional reviews. Your myth about ABA abuse of autistic children is rebutted by .... Conor's very expert, very well informed, opinion.

NOTE: Even as I am writing this comment Conor came in to the kitchen from the back step where he is playing with water balloons to say "Middle School Breakfast" to his mother. He wasn't telling her he wanted breakfast ... he was telling her what was on his mind ... getting back to school.

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Autism Awareness, or Lack Thereof, on a Halifax Bus

An autistic boy, one of 15 autistic children taking part in a field trip, was recently removed from a Halifax bus following what the transit authority described as disruptive behavior, piercing screams by the boy. The Canadian Press reports a difference of opinion over whether the boy was ordered to get off the bus by the driver, as alleged by his father, or whether the boy and his counselor left the bus voluntarily, as alleged by the transit authority spokesperson. The transit authority maintains an investigation is still ongoing even though it has already concluded that the boy was not ordered off the bus.

I find it unlikely that the boy and his counselor simply got off the bus without being either directed to get off ..... or being pressured to get off. The transit spokesperson has stated that the bus driver did not order the boy off the bus:

"The spokeswoman said images recorded by a surveillance camera aboard the bus indicate the driver told a counsellor that he couldn't keep driving unless Izaak's "piercing" outbursts stopped.

The spokeswoman quoted the driver as saying, "I can't drive if that keeps up."

"He said he was concerned that he couldn't continue to drive the bus because it was distracting."

Patterson said the driver did not ask to have the boy removed, and it appeared Izaak and his counsellor left the bus voluntarily."

If you accept the transit authority's position then it still seems likely to me that the counselor would have interpreted the driver's statement as an indication that the boy would have to be removed from the bus since they might not have been able to guarantee he would not continue with the screaming. I do not believe they felt that the boy's continued presence was wanted on the bus.

I am the father of a 13 year old boy with Autistic Disorder. He loves going for drives, even long drives, and is generally quiet and well behaved. There are times though, including yesterday, when his behavior could be described as "distracting". Sometimes he does engage in piercing screams, although they usually subside. Sometimes he pulls my hair or tries to grab my arm. When he does these things he is seated directly behind me; in close proximity. He is closer to me, arms's reach, then a boy on a bus would be to the driver.

I don't have the luxury of refusing to drive my son. I have to focus on the road despite any "distracting" behavior he might engage in. I don't know if the driver in question knew he would be driving a group of autistic children or whether the transit authority knew. It seems that the driver in question, accepting the transit authority's position on what was said, is not familiar with autism disorders and should not be driving autistic children without further training.

Anyone driving autistic children should be prepared to drive with some "distraction". As the father of a 13 year old boy with Autistic Disorder I know this, from experience, to be true.

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NY Times: Swine Flu Virus Will Not Be Abnormally Lethal

Our own take is this: A swine flu epidemic this fall and winter is likely to infect more people than a normal flu, but the virus will not be abnormally lethal.

New York Times Editorial, August 31, 2009

Not to downplay the tragedy of any death, and the impact on families and friends, but it is difficult to see why world governments have reacted with such panic to the Swine Flu (H1N1) version of the flu, the ordinary versions of which kill people every year. Massive investments of public funds have gone into development of vaccines which are being rushed into production. The NYT editorial points out that only 54 residents of the large population NYC area died in last springs Swine Flu outbreak. And the virus has not become more virulent as it proceeds around the world.

Some of these vaccines are going first to young children and pregnant women. Vaccine's Don't Cause Autism spokesman Paul Offit should watch the outcome of that "experiment". "Adjuvants" of unknown effect will be included in some vaccines AND in the US vaccine manufacturers have been granted liability immunity.

Again, every single death is a real tragedy, and hopefully deaths will be reduced even further by the massive immunization program that the health authorities are pushing. Hopefully too though public health authorities will keep reasonably accurate records of possible side effects of these rushed into production vaccines including the development of Guillain-Barré syndrome, and GBS deaths, as occurred in 1976, and .... any autism diagnosis increases amongst the populations of young children and children born of women who received the Swine Flu vaccines.

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A Dose of Controversy Breezes Over Most Autism Vaccine Issues But Was Fair to Wakefield

I was actually pleased with the Matt Lauer/NBC coverage of the Wakefield/Deer and MMR/Vaccine Issues in A Dose of Controversy. I thought he was fair to Dr. Wakefield, giving him an opportunity to address allegations made against him. The program didn't go after Brian Deer for some of the allegations against him. While the program did give Paul Offit a free run to say what he wanted about vaccines and autism I thought he, of all people involved in the program, looked the most emotional and overwrought.

The coverage of vaccine-autism issues was light and glossed over many important issues including the "science disproving vaccine autism causal connections". The show did give Dr. Healy a brief spot to point out what is my main concern with the vaccine autism war - the obvious attempt to stifle scientific inquiry on vaccine autism issues that has been going on expressly since the IOM 2004 Report and the insufficiency of the scientific investigation to date of these issues. I don't know if Dr. Healy's sensible observations will make any impact on important audiences like IACC members but you never know.

A major criticism is the continuation of the characterization of parents as desperate, hysterical, dangerous, ignorant and unable to understand the issues or the science. It is a belief genuinely held by figures like Dr. Paul Offit and Dr. Thomas Insel and it is a belief which prevents them from being able to make their case persuasively to parents.

These criticisms aside I was pleased that NBC tried to air both sides of the Wakefield/Deer MMR war instead of following recent trends and simply giving a one sided account based totally on the medical establishment position.

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Severe Autism Videos from CDFoakley: Do Not Watch If You Can't Handle Reality

The following videos show some of the hard realities, some of the challenges facing those who are most severely affected by autism and the family members who love and care for them.

The autism reality of the young man in the first video is not the autism reality of someone who will excel in a difficult and complex post office work environment or go on to work as a researcher alongside a team of high functioning autism experts. This young man is unlikely to appear before a high appellate court, august political committees, or on national and international television as a self appointed spokesman for all "autistics". and opposing evidence based interventions for other people's autistic children.

This young man's voice will not be heard by public decision makers deciding whether research, therapies and treatments should be funded to help address the autism realities shown in this video. This young man is unlikely to attend at any college, let alone an esteemed college for gifted youths or appear in scripted, orchestrated videos promoting a nonsensical theory of stimming as language. This young man's autism realities are unlikely to be gushed over enthusiastically by bloggers celebrating the joy of autism or promoting autism as anything except what it is ... a neurological disorder with profound negative consequences for so many affected by its reach.

This first video, cal fire family and less glamorous side of autism, is posted on YouTube by CDFoakley with the following comment:

Rare educational footage of autistic person with a complex mix of seizure disorder and self injurious behaviors. Point: to show how to help children suffering from such a brutal and complex behavioral disorder. Not for people who can't handle REALITY. Or who don't understand this situation.

The second video Brother and sister help protect autistic brother from head punches shows the realities of self injurious behavior and some of the impact on families trying to help their autistic family members. The video is also posted on YouTube by CDFoakely; this time with the following comment:

Siblings helping protect autistic brother during self injurious meltdown. Disturbing side of autism you won't see in public broadcasts or charity events about autism. Nor will you hear people who think autism is "wonderful" or a "gift" talk about this level of autism....

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A Nice Afternoon Trail Walk

The temperature is starting to cool a bit and turn toward early autumn after an unusual summer. With the cooler morning air Conor put on a Dad shirt over his shirt for some extra warmth. And we headed out on the trail this afternoon for a nice walk. My shirt seems to fit Conor a bit better around the belly than it does me. Hmmmm.

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Swine Flu Pandemic? Swine Flu Cases Falling Across the UK

"Across the UK the number of new cases of swine-flu are falling. Department of Health figures show that in the past week there were 5,000 infections in England - compared to over 100,000 at the start of the month."

BBC News, Friday, 28 August 2009 06:54 UK

Is this what the WHO and the CDC mean by a pandemic?

I am not trying to be glib about swine flu, or any influenza. I understand that the flu, swine, avian, or whatever variety of flu I contracted many times over the course of my life in Canada, can kill some people. Flu complications may bring my brief visit to this planet to an end some day but I have difficulty seeing why people around the world have been whipped into a panic over this specific flu, billions of dollars invested, testing of the safety and efficacy of vaccines rushed ... and possibly compromised ... based on available rate of infection and death information to date. And their previous track record at pandemic prediction ... the 1976 swine flu "pandemic" for example ... is not that great.

The figures below are taken from the Public Health Agency of Canada web site and indicate the number of people that have died from Swine Flu (H1N1) across Canada:

Every death is a tragedy for that person and those that know and love them. But the figures above, for an estimated population of 33,760,560 according to Statistics Canada's daily estimate, and like the UK information from the BBC above, are not what I think of when I think of a pandemic. The flu does kill significant numbers of people every year. In New Brunswick where I live we have been exposed to the Swine Flu already. A number of cadets visiting nearby Base Gagetown this summer contracted Swine Flu. They all survived. And New Brunswick has not, to date, recorded a single death, (yes, thankfully), but this humble, ignorant, non medical person has a hard time seeing the information to date as justifying the panic, the billions of dollars spent around the planet on vaccines, and their rush into production, with possible compromises to the safety and efficacy of the vaccines.

But what do I know. I am just a humble parent. And they are intelligent, well informed public health authorities who know better. If the WHO, the CDC and the Public Health Agency of Canada say there is a Swine Flu pandemic then I guess there must be a Swine Flu pandemic.

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Is Swine Flu Panic Petering Out at the CDC?

The CDC is starting to sound as though it is not sure that the swine flu (H1N1) pandemic will actually occur. It is now talking about the swine flu being like any other flu, serious stuff which can and does kill people each year, but no more than normal. As reported by the AP:

WASHINGTON — Government health officials are urging people not to panic over estimates of 90,000 people dying from swine flu this fall.

"Everything we've seen in the U.S. and everything we've seen around the world suggests we won't see that kind of number if the virus doesn't change," Dr. Thomas Frieden, head of the Centers for Disease Control and Prevention, said in a C-SPAN interview taped Wednesday.

While the swine flu seems quite easy to catch, it so far hasn't been more deadly than the flu strains seen every fall and winter — many people have only mild illness. And close genetic tracking of the new virus as it circled the globe over the last five months so far has shown no sign that it's mutating to become more virulent.

.......

What is likely: A busy flu season that starts earlier than usual.."

Governments have invested billions of dollars and lifetimes of credibility promoting the speculation that the world would be hit by a pandemic. In the US swine flu vaccine manufacturers have been given immunity from suit. It now remains to be seen whether pregnant women will be given vaccines with thimerosal and adjuvants. It remains to be seen whether the vaccine program will be rolled out in full force in most countries. It remains to be seen whether a possible autism baby boom will be created by a panic driven vaccination program.

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