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.
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.
Healthy young child goes to doctor, gets pumped with massive shot of many vaccines, doesn't feel good and changes – AUTISM. Many such cases!
— Donald J. Trump (@realDonaldTrump) March 28, 2014
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:
Massive combined inoculations to small children is the cause for big increase in autism….
— Donald J. Trump (@realDonaldTrump) August 23, 2012
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.“