It was a moment when Donald Trump’s larger-than-life presence on the global stage became unexpectedly personal.Near the end of his one-hour, 40-minute speech to a joint session of Congress on 4 March, the US president diverted from his favoured themes of a new golden age of American greatness and grievances against his adversaries to address a more unlikely topic: autism.The president drew his audience’s attention to Robert F Kennedy Jr, his controversial, newly confirmed choice as health secretary, and charged him with one overarching responsibility.“Not long ago, you can’t even believe these numbers – one in 10,000 children had autism,” Trump intoned. “Now it’s one in 36. There’s something wrong. One in 36 think of that. So we’re going to find out what it is. And there’s nobody better than Bobby.“Good luck. It’s a very important job.”It was not the first time that Trump had waded into the controversy swirling around autism – a neurodivergent condition affecting an estimated 75 million people worldwide. Nor was it the first occasion that he had touted Kennedy’s credentials as being able to tackle it.But the high symbolism of the setting brought home to me, a watching journalist, with sobering clarity that a life-changing decision, taken for the most pressing of family reasons, had taken on unforeseen contours.Just over two years ago, my wife and I had moved to the United States so that we could better address the needs of our son, who had been diagnosed with autism just before his third birthday. We had gradually despaired of finding a practical solution in the Czech capital of Prague, where we previously lived, and where state-of-the-art therapeutic remedies were still fledgling works in progress.America, by contrast, seemed to be a land of possibility and innovative approaches and to offer a more amenable environment to our circumstances – and had the added attraction that we all held US citizenship.In the period since our arrival, we found progress uneven, but engaged an outstanding therapist who made up for our difficulties navigating the Maryland state education system. I shifted my career from one centered in Europe, to covering US politics – and the second Trump administration.Now here – in the highest shrine of US democracy – was the graphically vivid figure of Trump digressing from his usual weaving script to elevate the very topic that had brought us to America’s shores to a national priority.It was not, to put it mildly, exactly what we had envisioned.The uptick in the autism trend Trump cited was exaggerated; while the most recent US autism statistics, recorded in 2020, did indeed record one in 36 children in the US having received a diagnosis of autism, the jump was less dramatic than he described – comparing with a rate of one in 150 in 2000, according to the Centers for Disease Control and Prevention (CDC).Nevertheless, the undoubted spike in instances of the condition meant that his proclaimed zeal to find a cause resonated with many, us included.The catch lay in his choice of Kennedy, who has declared that autism is caused by vaccines – a scientifically baseless theory which Trump himself has previously indulged – as the lead figure in a national crusade to discover a cause.I spoke with other parents of children with autism, who used a range of pejorative adjectives to deride this conviction; among them “dangerous”, “scary”, “batshit crazy”, “despicable” and “disgusting”.Kennedy’s views carry weight which, experts fear, will be lent still greater authority by his new health portfolio. The CDC is reportedly now planning a large study into potential connections between vaccines and autism.“Were I the father of a child with autism, I would be really angry at the anti-vaccine community for taking this story hostage and for diverting resources and attention away from the real cause, or causes, of autism,” said Paul Offit, a pediatrician specialising in immunology and author of the 2008 book Autism’s False Prophets, which rebutted the alleged links between the condition and vaccines.“There’s financial or emotional burdens that make it hard enough for parents, but to have this offered as a reason for why a child has autism is just spurious and in some ways malicious, because I think it puts the burden on the parent.”Belief in the alleged connection between vaccinations and autism gained traction after a 1998 study conducted by a British physician, Andrew Wakefield, and published in the Lancet asserted a causal link with the measles, mumps and rubella (MMR) vaccine. The paper ignited a firestorm of controversy in Britain, with the then prime minister, Tony Blair, pressured to say whether his baby son had been administered the MMR shot.But research underpinning the finding was later debunked as fraudulent, leading to the Lancet retracting the paper and Wakefield being struck off the UK medical register. Multiple subsequent studies have found no connection between the vaccine and autism.Despite the countervailing evidence, suspicions persisted – fuelled in no small part by Kennedy himself, who has shown himself unmoved in the face of challenge.My personal interest in Kennedy and his views on vaccines was piqued after hearing a 2023 podcast interview with the New Yorker. He was adamant under questioning from the magazine’s editor-in-chief, David Remnick, who – disclosing himself as the parent of a child with “quite severe” autism – asked if he had second thoughts about “slinging around theories … that don’t have any great credibility among scientists”.“I’ve read the science on autism and I can tell you … If it didn’t come from the vaccines, then where is it coming from?” Kennedy responded.Scientists say there are multiple potential answers to that question, including genetics, drugs taken during pregnancy, age of conception – albeit none giving a definitive explanation.skip past newsletter promotionafter newsletter promotion“When you hear about autism and its causes, the first thing people think is vaccines, which is the one thing you can say it’s not,” Offit said.Caught in the crossfire of this conflict between science and dogma are parents struggling to cope with a condition whose manifestations can be maddening, challenging and bewildering.Autism is a wide spectrum condition and children with it come in a surprising variety of types. Some – like my son – are functional, verbal and teachable, with aspects of high intelligence; others are non-verbal and may have severe intellectual disabilities; many others may fall somewhere in between.“If you’ve met one child with autism, you’ve met one child with autism,” goes the refrain among many specialists.Common to all, however, are atypical behaviours that for the parents, are life-changing and force them to make painful adaptations, sometimes at high financial cost.A complaint frequently heard about Kennedy’s views is that they heap stigmatisation on their children and unwarranted blame on the parents.“It puts a stigma on our children that their parents did something wrong when they were pregnant with them, and thus it’s the parents fault,” said Davina Kleid, 38, an executive assistant in a real estate development company in Maryland, whose nine-year-old daughter has autism.Kleid feared Kennedy’s views have the potential to unleash an eventual crackdown conjuring scenes resembling The Handmaid’s Tale, Margaret Atwood’s novel dystopian novel depicting a bleak patriarchal future and female subjugation.“Who knows? Maybe I could be arrested for having a child on the spectrum, because they’re going to say that I did something to purposely cause her to have this condition,” she said. “There’s nothing wrong with my child. It’s how she was born. I’m not ashamed of it, and I don’t think anyone should be ashamed of it.”Madeline, a publisher from Maryland who requested that her real name not be disclosed, said Kennedy’s views amounted to a disparagement of her 24-year-old son, who was born at the height of the MMR controversy arising from the Wakefield paper but who showed signs of developmental delay before being vaccinated.“It is just insulting that people would think that it would be better to get measles or mumps or pertussis or whooping cough than to have autism,” she said. “And RFK Jr has said as much. It’s like this is worse than getting these terrible, life-threatening diseases.”Lux Blakthorne, 33, a professional gardener living in Chester county, Pennsylvania, said fears for the future over her non-verbal, nine-year-old autistic son, Kai, had prompted her to make plans to emigrate to Germany, the country of her ex-husband’s birth and where she said provisions for autism had made great strides.The breaking point, she said, would be cuts to Medicaid, the public healthcare system that Kennedy oversees and which pays for Kai’s daily needs including education at a special private facility.An added factor is a recent White House executive order banning puberty blocking medication for those under 18, a measure aimed at stymying gender-affirming care for transgender youth but which, Blakthorne says, would prevent her trying to mitigate harmful autism-related behaviour that is likely to be exacerbated by the onset of puberty.“I think RFK sees disabilities as a problem that needs to be fixed,” said Blakthorne. “He has a dangerous belief system, and it’s not science- or fact-based.”Yet amid the negativity, the Autism Science Foundation, a research group, says Kennedy has a unique opportunity to discover its causes.“Many of us in the autism community give RFK credit for wanting to study the causes of autism,” said Alison Singer, the foundation’s president and the mother of a daughter with autism.“What would be very positive is if as health secretary, he can declare profound autism as a national public health emergency,” she said.“That would open up a variety of actions he could take, like making additional grants, entering into new contracts [and] really focusing funding on investigating the causes of autism, treatments and prevention.” More
