D

ear President-elect Trump,

Your record as a businessman is something of an open book to the people you will lead come Inauguration Day. But with no track record in governance, the policies you plan to put into effect are something of a black box. One that concerns me is what you will do about vaccination, a proven public health success story that has saved millions of children’s lives worldwide.

As the author of “NeuroTribes,” a best-selling book on the history and legacy of autism, I have paid particular attention to your statements during the campaign and after the election about autism and other developmental disabilities.

advertisement

Your opponent, Hillary Clinton, had a detailed plan for enhancing access to desperately needed services, support, housing, and employment for autistic people and their families, while boosting funding for basic research. Clinton’s plan, which included the first national prevalence survey of autism in the United States, was developed with the input of autistic adults — a historical milestone.

If you are developing a similarly comprehensive plan to improve the quality of life for people on the spectrum and those who love them, please make it public. Our country needs to do more to meet the needs of a population that has been underserved for decades, leading to widespread poverty and unemployment, long waiting lists for diagnosis and services, a shocking lack of programs to help teenagers transition from school to the workplace, few acceptable housing options for profoundly disabled adults, and soul-crushing levels of stress for autistic people and their families.

There are unsettling signs that you plan to de-emphasize support for autistic people and their families, and at the same time erode mandatory vaccination laws because you subscribe to the misguided theory that vaccines are responsible for triggering a global autism epidemic. That damaging misconception is one of the primary subjects of my book.

Your tweets, like the one below, cause me deep concern.

So do some of the personal connections you’ve made. Four years ago at a “Statesman of the Year” dinner in Florida, where you received a bust of Ronald Reagan, Gary Kompothecras, a multimillionaire chiropractor in the Sarasota area — and the owner of the building that housed your campaign headquarters — made the case to you and your wife, Melania, that the current vaccine schedule was responsible for the dramatic rise in autism.

After that meeting, you tweeted:

Kompothecras, as the father of two young adults with autism, has waged a public war on mandatory vaccination laws and public health agencies like the Centers for Disease Control and Prevention. He believes that vaccines were responsible for his children’s dramatic loss of skills in the second year of life, a phenomenon known as autistic regression.

As recounted by Kent Heckenlively in his new book, “Inoculated,” you attended a private meeting on Aug. 11, 2016 in Kissimmee, Fla., arranged by Kompothecras. There you were introduced to Andrew Wakefield, the former British gastroenterologist who pushed the notion that vaccines cause autism from the realm of fringe conspiracy theory into the mainstream. You’ve probably heard that Wakefield’s 1988 case series in the Lancet suggested that the combination vaccine for measles, mumps, and rubella (MMR) was linked to a “new” form of autism called regressive autism. That connection has long since been disowned by its coauthors, retracted by the Lancet, and branded an “elaborate fraud” by the editors of the BMJ. After an investigation by the UK’s General Medical Council, Wakefield was stripped of his license to practice medicine in England.

You seem to respect bold, independent thinkers who push against the conventional wisdom of the experts and trust their gut instincts. The problem with Wakefield and his supporters, who promote “vaccine choice,” is that their theories are based on shoddy research and on a series of misrepresentations of autism history. In my book, I explain that autism — even so-called regressive autism — has been with us for a very long time. It was memorably described by pioneering researcher John Langdon Down, as affecting “many children” in the asylum where he worked in 1887, nearly a century before the MMR vaccine was developed.

As someone who has spent years learning about autism and getting to know people all across the spectrum, I appreciate how important your leadership could be at this decisive time in history. It’s crucial that more research funding be devoted to improving the quality of life for autistic people of all ages.

The families of profoundly disabled children and adults need more and better housing options that will enable their loved ones to stay in their communities, instead of being dumped in state institutions and poorly managed group homes. Many people on the spectrum are desperately eager to engage in meaningful work and make contributions to society, yet unemployment and underemployment in this community remains tragically high.

Initiatives like SAP’s Autism at Work program provide templates for companies to tap this underutilized population, boosting shareholder value while fast-tracking innovation. Many people on the spectrum struggle with chronic anxiety and seizures; the potential for innovative treatments from the biotech industry is great. The distinctive ways that autism manifests in women is still poorly understood, which delays diagnosis and support for years.

The future first lady’s pledge to fight bullying is a promising sign for all disabled people and their families. And a national survey of autism prevalence among children and adults in the United States is long overdue, so we can make wise judgments about the challenges we’re facing as a society.

Initiatives to improve the lives of people with autism and their families were largely sidelined for more than a decade as the world had a long and unproductive argument about vaccines. Before the invention of vaccines, routine infections like measles and pertussis killed thousands of American children every year, and left many thousands more with brain damage and other serious complications. Vaccines have proven benefits, while the link with autism is a dead end. By embarking on a debate about “vaccine choice,” you are providing another distraction that will divert energy from the primary goal of ensuring a happier, healthier, more productive, and more secure future for every American.

The time to improve the lives of autistic people and their families is now, so parents no longer have to lay awake at night wondering what will happen to their sons and daughters after they’re no longer around to take care of them.

A few weeks after the donor meeting in Sarasota, Heckenlively reported that you pulled Kompothecras aside at another GOP event and whispered in his ear, “You just watch and see what I do with autism.”

Now that you are the President-elect of the United States, the whole world will be watching.

Steve Silberman is a writer based in San Francisco. He is the author of “Neurotribes: The Legacy of Autism and the Future of Neurodiversity.

  • Steve:

    Thank you for your courteous reply. I will await a call from my press agent that you have contacted her and that we can sit down for a cup of coffee and friendly dialog.

    All the best,
    Kent Heckenlively, J.D.
    Author of INOCULATED: How Science Lost its Soul in Autism

  • Vaccines are inherently dangerous. Especially in the large doses that our children receive now. Do your research and delve into the pamphlets and ingredient listings. We are poisoning our children and our own military/veterans. Do not forget about our fluoridated water systems as well. Fluoride is a major ingredient in most if not all anti-depressants. Do not fall for this. Pharma became corrupt and greedy. They want us ignorant, ill, and like sheep. So that they may continue to fill their pockets and act as if they are trying to cure us. The truth is out there. Do your research on what is best for your children and families.

  • I would like to tell you why, after never having voted for a Republican presidential candidate and after voting twice for President Obama, I voted for Donald Trump. 1) I want universal health care and an end to the ACA, 2) I want to retain my freedom against medical tyranny by being allowed to have religious or personal belief exemptions in regards to vaccines or any medical care. I don’t know whether vaccines cause autism, but if a parent believes that, it is reason enough for the “professional” to stop his marketing spiel and quit being a tyrant. 3) Hillary was more certain to bring nuclear war. 4) Anti-smokerism. Smoking is legal, and marijuana continues to become legal because it is politically correct. Smokers are discriminated against and it is encouraged for society to have this attitude against smokers. 5) Marketing science, covered partially already, but to include outlawing plastic bags as courtesy gifts at grocery checkout, because we all know that paying for plastic bags instead of getting them free renders them environmentally friendly. I will vote with the wallet against “science”, and especially pharma/vaccine/medical, and also refrain from supporting environmental groups such as the Sierra Club and Nature Conservancy.

    You tyrants called Jill Stein that made-up stupid word, “anti-“. She wasn’t that at all. She and Donald Trump simply do not give blanket permission for pharma to dispense *whatever* and give it approval in the name of the god, “science” – even though it is pure, ugly marketing science. So let’s hope Donald Trump does do some things according to what he suggested about his beliefs.

  • President Trump should follow the truth which is big Pharma is causing a major disaster in the US by giving toxic vaccines. Toxic Vaccines are causing 1 in 50 children to be autistic and in some cases dead. President Trump will not be bought of by Big Pharma and their paid shills.

  • Dear Steve:

    Thank you for mentioning my new book, “INOCULATED: How Science Lost its Soul in Autism”, now available on Amazon when you referenced me. The previous STAT reporter, Rebecca Robbins, had failed to mention the book in which the Trump/Wakefield meeting is recounted. I am happy you corrected that oversight.

    I noticed that you live in the San Francisco Bay Area as I do. I applaud your efforts to support individuals with high-functioning autism and making the world a better place for them. My task in life is much different, as I have an eighteen-year-old daughter with a seizure disorder, autism, who can not speak, and requires help with the most basic of her daily tasks.

    In history I have found myself most attracted to those individuals who reached across great divides to try and heal great wounds. I try to emulate Nelson Mandela who believed in three important principles: Satyagraha, the path of truth; Ahimsa, the commitment not to harm those who may be his momentary adversaries; and Ubuntu, which is the idea that we are who we are through our relationship with others. I do not pretend to know the particulars of your life, but your passion for “Neuro-tribes” makes me believe this has been a particular challenge in your life. We all have our challenges.

    In the spirit which animated Thomas Jefferson and Thomas Jefferson to correspond during the later years of their lives, I make an offer of friendship. I am happy to meet with you anywhere in the Bay Area, break bread and share a meal, and discuss the concerns of our two great tribes. I will not write anything about our meetings without your approval and ask the same consideration from you.

    If you are amenable to such a meeting, and offer of dialog and friendship, (and feel you can put up with some of my bad jokes), I encourage you to contact my publicity agent, Jackie Lapin at (818) 707-1473.

    All the best,
    Kent Heckenlively, J.D.
    Author of “INOCULATED: How Science Lost its Soul in Autism” and
    Co-author with Dr. Judy Mikovits of “PLAGUE: One Scientist’s Intrepid Search for the Truth About Human Retroviruses, Chronic Fatigue Syndrome (ME/CFS), Autism, and Other Diseases.

    • Steve:
      I meant to write, “Thomas Jefferson and John Adams.” I apologize for the mistake.

      Sincerely,
      Kent Heckenlively, J.D.
      Author of “INOCULATED: How Science Lost its Soul in Autism” and
      Co-Author with Dr. Judy Mikovits of “PLAGUE: One Scientist’s Intrepid Search for the Truth about Human Retroviruses, Chronic Fatigue Syndrome (ME/CFS), Autism, and Other Diseases.

    • Hi, Kent. Thanks for your courteous note. I’d be happy to have coffee sometime and I’m sure we could set that up in the new year. Ijust wanted to correct one misconception in your post:

      “I applaud your efforts to support individuals with high-functioning autism and making the world a better place for them. My task in life is much different, as I have an eighteen-year-old daughter with a seizure disorder, autism, who can not speak, and requires help with the most basic of her daily tasks.”

      My work does not focus solely on “individuals with high-functioning autism,” as you put it. The most detailed account of an autistic individual in “NeuroTribes” is of a boy named Leo Rosa (chapter 2, “The Boy Who Loves Green Straws”), who has very limited expressive speech, often engages in repetitive behavior, and was self-injurious when he was younger. Thankfully, he’s a very happy kid now, while remaining profoundly disabled, in part because his parents got past the stage of stigmatizing him as “vaccine-injured,” in part by listening to other parents and to autistic people themselves. There are many portrayals of profoundly disabled autistic people in my book, though I avoid language like “high-functioning” and “low-functioning” because I think it’s dehumanizing. And my article above, of course, talks about the need to develop better housing options for profoundly disabled autistic people, and better treatments for seizures, which I’m sad to say is one of the leading causes of death for autistic people with intellectual disability.

      So, your mission may not be all that different from mine after all. I just focus on ways to change the world to make it a better place for *all* autistic people and their families, rather than focusing on vaccine-related conspiracy theories. But yes, I would be happy to have coffee any time in the new year.

    • Kent,
      One of the funniest posts on Age of Autism is the one that compared Andrew Wakefield to Jesus and Nelson Mandela. Did you write that?

  • James Lyons-Weiler’s new book, The Environmental and Genetic Causes of Autism, reviews thousands of studies and concludes that autism is caused by a combination of environmental toxins coupled with genetic variation susceptible to these toxins. In other words, autism is man-made: if we reduce the toxic load in our environment, there will be far fewer autism cases. I hope everyone reads the book, and that we take the actions it spells out.

  • vaccines don’t cause autism, huh? you couldn’t be more wrong, steve.

    from the emergency gathering of vaccine manufacturers and 50+ scientists in 2000:

    Dr. Verstraeten [CDC], pg. 40: “…we have found statistically significant relationships between the exposure and outcomes for these different exposures and outcomes. First, for two months of age, an unspecified developmental delay, which has its own specific ICD9 code. Exposure at three months of age, Tics. Exposure at six months of age, an attention deficit disorder. Exposure at one, three and six months of age, language and speech delays which are two separate ICD9 codes. Exposures at one, three and six months of age, the entire category of neurodevelopmental delays, which includes all of these plus a number of other disorders

    Dr. Verstraeten [CDC], pg. 44: “Now for speech delays, which is the largest single disorder in this category of neurologic delays. The results are a suggestion of a trend with a small dip. The overall test for trend is highly statistically significant above one.”

    Dr. Verstraeten [CDC], pg. 76: “What I have done here, I am putting into the model instead of mercury, a number of antigens that the children received, and what do we get? Not surprisingly, we get very similar estimates as what we got for Thimerosal because every vaccine put in the equation has Thimerosal. So for speech and the other ones maybe it’s not so significant, but for the overall group it is also significant….Here we have the same thing, but instead of number of antigens, number of shots. Just the number of vaccinations given to a child, which is also for nearly all of them significantly related.”

    Dr. Guess, pg. 77: “So this essentially is a 7% risk per antigen, an antigen is like in DPT you’ve got three antigens.”

    Dr. Verstraeten [CDC], pg. 77: “Correct.”

    Dr. Egan, pg. 77: “Could you do this calculation for aluminum?”

    Dr. Verstraeten [CDC], pg. 77: “I did it for aluminum…Actually the results were almost identical to ethylmercury because the amount of aluminum goes along almost exactly with the mercury one.”

    • Mr. “Truth,” I’m interested in your referenced source material. You know there has been some false news circulating of late so I like to follow up on interesting new information. I’m sure such revelations have been made publically available for the world to review. Since I can’t find any scientific credentials for Mr. Truth, how about your provide a link to your source?

    • @Mr. More Details Required:

      Are you not aware of how to conduct a simple internet search using copy and paste?

      Here is the give away: “from the emergency gathering of vaccine manufacturers and 50+ scientists in 2000” (hint: Simpsonwood, Georgia)

      Also, here’s another CDC cover-up of vaccine causation to brain damage/autism:
      2014 CDC whistleblower claims massive scientific fraud at CDC, ongoing autism cover-up

      http://www.ecowatch.com/cdc-vaccines-autism-2051536402.html

      oh, and regarding the massive cover-up after the 2000 meeting of vaccine manufacturers and 50+ scientists:
      http://dx.doi.org/10.1155/2014/247218

      6. The Verstraeten et al. (2003) Study

      The CDC’s published Verstraeten et al. [25] study consists of a cohort analysis of a subset of records from the medical records databases for several of the HMOs whose records were maintained in a central data repository, the Vaccine Safety Datalink (VSD). This study was conducted in at least five separate phases. In the final phase (i.e., the results reported in the publication), the authors stated that there was no relationship between Thimerosal exposure in vaccines and autism incidence. However, no data are reported in the published study to support this conclusion. Results from the first phase of the study released in an internal presentation abstract by Verstraeten et al. [20] (mentioned earlier) using records from four (4) HMOs showed that infants who were exposed to greater than 25 mg of Hg in vaccines and immunoglobulins at the age of one month were 7.6 times more likely to have an autism diagnosis than those not exposed to any vaccine-derived organic Hg.

      Within the same abstract, Verstraeten reports that the risk for any neurodevelopmental disorder was 1.8, the risk for speech disorder was 2.1, and the risk for nonorganic sleep disorder was 5.0. All relative risks were statistically significant

      In the second phase of the study, a different approach was taken: exposure was compared at 3 months of age, rather than one month. Results of this phase showed that children exposed to the maximum amount of organic Hg in infant vaccines (62.5 μg) were 2.48 times more likely to have autism diagnosis compared to those exposed to less than 37.5 μg of Hg in vaccines. These results were also statistically significant. No assessment against a “no exposure” control was apparently completed in this study phase.

      In the third phase of the study, in which more data stratification methods and different inclusion/exclusion criteria were applied to the analysis, the relative risk of autism for children at three months of Thimerosal exposure dropped to 1.69. At this point, evidence in an email from Verstraeten, the lead investigator, written to a colleague outside of the CDC (obtained by the authors via the US Freedom of Information Act of 1950 as amended), suggests that Verstraeten could have been receiving pressure within the CDC to apply unsound statistical methods to deny a causal relationship between Thimerosal and autism. In this email, Verstraeten states (Figure 1), “I do not wish to be the advocate of the anti-vaccine lobby and sound like being convinced that thimerosal is or was harmful, but at least I feel we should use sound scientific argumentation and not let our standards be dictated by our desire to disprove an unpleasant theory.”

      The fourth and fifth phase of the study used records from only two of the original HMOs and incorporated a third HMO, Harvard Pilgrim, into the analysis. Some critics of the study questioned the use of Harvard Pilgrim, as this HMO appeared to be riddled with uncertain record keeping practices, and the state of Massachusetts had been forced to take it over after it declared bankruptcy. In addition, the HMO used different diagnostic codes than the other two HMOs used in phases 2 and 3. Other criticisms include that the study used younger children, from 0 to 3 years of age, even though the average age for an autism diagnosis at the time was 4.4 years. Since half of the children receiving an autism diagnosis would be over 4.4 years of age, far greater than the maximum age in the study at 3 years, this analysis excluded more than 50% of all autism cases from this HMO. Also, the cohort from this HMO contained 7 times fewer individuals than the main cohort from the previous study (i.e., HMO B), and there was no apparent attempt to assess the power of this HMO to show any statistically significant effect.

      Also of note is the lack of variability within strata among the different HMOs in the Verstraeten et al. [25] study. By design, a cohort study seeking to assess the effect of some treatment on a subsequent outcome should be designed to maximize the range of the independent “treatment” variable (Thimerosal exposure in this instance) in order to determine if there is indeed an “effect” in the dependent postexposure outcome variable (neurological disorders in this study). However, the authors knowingly stratified the analysis based on the participants’ gender, year of birth, month of birth, and clinic most often visited. This effectively reduced the variability of Thimerosal exposure within the strata to the point that it reduced the capability of the final analysis to find any but the “strongest” Thimerosal exposure-related outcome effects. The problems with such “overmatching” practices have been discussed in detail in peer-reviewed scientific literature and will be treated in greater detail in the forthcoming review of the CDC’s Price et al. [26] paper.

      Another methodological concern about the Verstraeten et al. [25] study is related to the issue of the minimum follow-up period required for individuals in the cohorts examined to ensure that all the cases in the cohort will have been identified with a high degree of certainty. This issue has been mentioned as a problem in the previous studies. As mentioned earlier, the method used to determine the minimum follow-up period for individuals is a critical issue in all studies examining the relationship between exposures and the subsequent risk of a neurodevelopmental disorder diagnosis, especially in those instances where the exposures to all participants in the study are the same or essentially the same. This is the case because the risk of an individual being diagnosed with a neurodevelopmental disorder is not uniform throughout his/her lifetime. Any follow-up method that fails to consider the lag time between birth and age of initial neurodevelopmental disorder diagnosis will likely not be able to observe the true relationship between exposure and the subsequent risk of a neurodevelopmental disorder diagnosis. Verstraeten et al. [25] included children in the control group who were too young (down to “0” years of age) to receive a neurodevelopmental disorder diagnosis.

      Within this study, Verstraeten et al. [25] still found significantly increased risk ratios for tics and language delay. However, the authors stated that, because these results were not consistent between the HMOs tested, these significantly increased risk ratios could not be used to make a determination of the potential adverse consequences of organic-Hg exposure from TCVs.

    • Mr. Truth
      As you know, but deliberately don’t mention because you are intellectually dishonest, thimerasol has not been used in US vaccines since the 90s. And the “study” you mentioned was funded by Mark Geier, who has been stripped of his license to practice medicine in every state for “misdiagnosing patients, diagnosing patients without sufficient tests, and recommending risky treatments without fully explaining the risks to the parents.” Mark’s son has been fined for identifying himself as a physician when he only has a BA in biology. This did not stop father and son from delivering a dangerous, unapproved autism “treatment” to children whose parents had been duped into believing vaccinations were the problem. In other words, the Geiers’ entire business model relies on promoting the repeatedly discredited claim that vaccines cause autism. Therefore, everything you (and they) say can be thrown in the trash. It’s false, it’s a scam, and it’s dangerous to spread this filth as anything resembling truth. Please stop it.

    • @Ed Bast , now you’re just blatantly lying. Thimerosal was still widely used well into the mid 2000’s, with permission explicitly granted by the CDC and FDA, and as proven by the 2000 Simpsonwood, Georgia gathering. Going by your own stated logic, we should discount anything you’ve written since you are pretty much caught in a lie, no?

      the points of intentional CDC malfeasance made by all those authors, including the geiers, stands until proven otherwise. it’s a fact the CDC, in multiple studies, found “statistically significant” casual relationships between mercury + aluminum (note that aluminum is found in heavy doses in almost all childhood vaccines), and subsequently altered major data sets to remove such causal associations.

      And you haven’t even bothered to address the fact the 2014 CDC whistleblower stated fraud occurred in multiple studies that found causal relationships between a myriad of vaccines, both with and without thimerosal (which coincidentally, completely vindicates Andrew Wakefield, not to mention all the other recent studies proving his initial claim of major GI inflammation found in autistics)

      http://www.ecowatch.com/cdc-vaccines-autism-2051536402.html

      Vaccinepapers.org also lists a tremendous amount of recent and replicated published studies proving immune activation causes brain damage/autism (2005 JHU, 2012 Caltech, 2016 MIT, 2013 Japan Suzuki et al, etc, etc.) which certainly points to vaccines as the main culprit for the rising worldwide autism epidemic:

      In VaccinePaper.org’s own words:

      “Vaccines are dangerous and cause brain damage (autism, schizophrenia) and immune disorders (allergies, autoimmunity). Science has proven that autism and schizophrenia are caused by immune activation during brain development. When activated by an infection or vaccine, the immune system produces proteins (cytokines) that cause defects in brain development. This can manifest as autism or other brain disorders (e.g. depression, ADHD, schizophrenia). Vaccines are designed to cause immune activation and stimulate the specific cytokines that cause this damage. Google “immune activation autism” and you will be amazed at what the science shows.

      Immune activation has also been proven to cause the physiological damage observed in autism: mitochondrial dysfunction, damaged/missing Purkinje cells, microbiome disruption (dysbiosis), angiogenesis (excessive blood vessel growth), and long-term brain inflammation.

      It is proven beyond any doubt that autism is caused by immune activation during brain development. Even the specific cytokines that cause autism are now known: interleukin-6 and interleukin-17a. IL-6 is produced in the brain by vaccine adverse reactions.

      The greatest danger is probably aluminum adjuvant. Aluminum-containing vaccines have been little-studied in relation to autism. It is proven that aluminum adjuvant causes brain and immune system damage at dosages infants receive from vaccines. It is proven that Al adjuvant nanoparticles travel into the brain after injection, and stay there. Also, Al adjuvant has been shown to cause the specific type of immune activation (the cytokine IL-6) proven to cause autism. These results have been replicated several times. Most vaccines contain aluminum.

      Only the MMR vaccine has been much studied in relation to autism. But every one of the MMR-autism studies is fatally flawed because of selection bias. They are not randomized or properly controlled. Consequently, children with pre-existing neuro- or immune disorders (caused by prior Al-containing vaccines) are concentrated in the “control” group of these studies. This makes the damage caused by the MMR vaccine unobservable in the MMR-autism studies. All of the MMR-autism studies have this systematic bias.

      The most dangerous vaccines are likely the ones that contain aluminum, and are given at the youngest ages, when the brain is most sensitive to immune activation. So, the Hep B vaccine, which contains aluminum and is given on the day of birth, is probably the most dangerous of all. There are only two studies of the Hep B vaccine and autism, and they both found an association with autism.

      The MMR vaccine stimulates an immune signal (a “chemokine” called MCP-1) that causes white blood cells to transport aluminum particles (received from prior vaccines) into the brain. Hence, the MMR vaccine may greatly amplify the brain damage caused by aluminum adjuvant.”

  • I am 56 and have been diagnosed as Autistic in the last couple of years. Diagnoses of autism have rocketed in recent years. It is diagnosis that has coincided with vaccinations, not the number of people who have autism. When I grew up there was no MMR. I was just grateful my mother had not been given Phalidomide.

Comments are closed.

Recommended Stories

Sign up for our
Daily Recap newsletter

A roundup of STAT’s top stories of the day in science and medicine — delivered straight to your inbox every weekday afternoon.