Autism

Subterms

    Latest story

    188 Shares156 Views

    Illinois governor is first in US to block federal access to personal data on autism

    by

    Illinois governor, JB Pritzker, has signed a first-in-the-nation executive order to block the federal government from collecting personal health data related to autism, a direct rebuke to the Trump administration.Pritzker, a Democrat who has been one of the more vocal critics of Donald Trump’s second administration, signed the order last week, saying he wanted to protect “dignity, privacy, and the freedom to live without fear of surveillance or discrimination”.It came two days after the US Health and Human Services secretary, Robert F Kennedy Jr, announced a plan to use data maintained by the National Institutes of Health, and claims submitted for Medicare and Medicaid coverage, to determine the causes of autism. While the agency did not release details of the plan, Kennedy promised it would follow “applicable privacy laws to protect Americans’ sensitive health information”.Prior to his rise to health secretary, Kennedy joined anti-vaccine advocates in claiming childhood vaccines are responsible for autism, but studies by the US Centers for Disease Control and Prevention and others have ruled that out.Pritzker’s executive order bans state agencies from disclosing “personally identifiable autism-related data” outside of state government unless the person or their guardian gives consent, it’s required by legal action, it’s necessary to provide services such as employment or housing or is otherwise required by law. State contractors, vendors and grant recipients are also covered.“We are taking steps to ensure that our state remains a leader in protecting the rights of individuals with autism and all people with disabilities,” Pritzker said.Andy Shih, chief science officer for Autism Speaks, a national advocacy group funding research and services, said he’s unaware of a similar declaration elsewhere. And while Kennedy promises to abide by privacy guidelines, Shih said with advances in computational power and algorithmic thinking, what’s private data today might not be tomorrow.Government investigators could use some techniques to get more information than what is previously disclosed. In the wrong hands, it could be used against patients to deny them constitutionally protected rights.“There’s always that concern,” Shih said. “Being proactive to protect privacy, which is something we value as a society, this should be applauded.”Kennedy has previously said he wants to be able to announce by September some of the causes of autism, a complex brain disorder better known as autism spectrum disorder because it affects people differently. For some people, profound autism means being nonverbal or having intellectual disabilities, while milder cases might mean difficulty with social and emotional skills.Experts say Kennedy’s planned database isn’t appropriate to uncover autism’s causes in part because there’s no information about genetics. However, Shih noted that the Department of Health and Human Services’s announcement was about creating a platform to help understand a range of chronic illnesses, which he said could be useful.Shih added that linking data sets is a proven way of studying issues of health. He pointed to a study published earlier this year in the Journal of the American Medical Association that found dementia in significantly higher numbers among autistic adults over age 65 than the general population. It was achieved by linking numerical identifiers from two different data sets. More

    More stories

    • 150 Shares179 Views

      in Elections

      ‘A Veneer of Official Medical Knowledge’: Three Opinion Writers on Kennedy’s Tenure

      by

      Alexandra Sifferlin, a health and science editor for Times Opinion, hosted a written conversation with the Opinion columnist Ross Douthat and the Opinion writers Jessica Grose and David Wallace-Wells about Robert F. Kennedy Jr.’s first two months as secretary of health and human services.Alexandra Sifferlin: Robert F. Kennedy Jr. vowed to tackle chronic disease and take on the food and pharmaceutical industries. But his response to a measles outbreak in the Southwest — and inflammatory remarks about autism at a press briefing — have drawn criticism from all sides.Ross, you’ve written about your own experiences with chronic illness and the limitations of the U.S. medical system. What’s been your view of Kennedy’s Make America Healthy Again movement, and what do you make of his tenure as health leader so far?Ross Douthat: I think debates about the limitations of the U.S. medical system tend to be polarized in a very, shall we say, unhealthy way. On one side, you have people who haven’t hit the limits of medical consensus and knowledge in their own lives, and therefore struggle to understand why so many of their fellow citizens would want to wander outside those limits in search of answers or wisdom. On the other side, you have people with very good reasons for skepticism of conventional wisdom, but who have allowed that skepticism to become total, making them reject everything the establishment says while fastening onto a specific outsider narrative as an absolute alternative even if the evidence is lacking.On a lot of fronts, Kennedy and the MAHA movement exhibit the latter problem. There’s absolutely room for new research and new debate about the causes of chronic illness, or autism or obesity — all areas where the official understanding of things doesn’t have definite answers for a lot of people. And there’s always good reason for skepticism about the medical-industrial complex writ large. But Kennedy seems committed to his own set of low-evidence theories — the vaccine-autism link being the most prominent example — and he seems to be working backward from the outsider perspective, rather than trying to genuinely create dialogue between the establishment and its critics.David Wallace-Wells: I’m not sure it’s even just low-evidence theories. I worry about the quality of the evidence demonstrating the problem. One thing I’d really like to see an autism commission tackle is the seemingly simple question of to what degree we actually are really living through an epidemic. I think there are reasons to worry about an increase in cases, and about environmental factors contributing. But I also think the alarming charts you see showing exponential growth in prevalence are really not very credible, and yet they are what is powering our panic.We are having trouble retrieving the article content.Please enable JavaScript in your browser settings.Thank you for your patience while we verify access. If you are in Reader mode please exit and log into your Times account, or subscribe for all of The Times.Thank you for your patience while we verify access.Already a subscriber? Log in.Want all of The Times? Subscribe. More

    • 200 Shares159 Views

      in US Politics

      Why does RFK Jr want to put my family on an ‘autism registry’? | Deborah Bloom

      by

      I always knew my parents operated on a different wavelength than most.For one, they are both exceptionally smart. My mother is a former mathematician, who studied the various levels of infinity as part of her master’s thesis. My father is a computer programmer who, at 17 years old, was one of the youngest people to ever be able to communicate with ships in morse code. They met at a party for members of Mensa, a club for the highly intelligent.But their gifts have come with challenges. My dad struggles with eye contact and can become easily overwhelmed in social settings, where emotion and nuance can short-circuit his systems. My mother has difficulty with executive function, and finds it tough to stay neat and organized. Regulating their emotions and reading social cues don’t come easily to either of them.My father was first diagnosed with what was then known as Asperger’s syndrome in his 20s. My mother has never been officially diagnosed as autistic, but identifies as such. When I was a child desperately wanting to fit in with others, I found their neurodivergence to be embarrassing. I wanted what I thought other kids had: parents who got them to school on time, who didn’t have unpredictable, emotional flare-ups or constantly messy homes.Now as an adult, living in a time when neurodivergence is more openly discussed and understood, I’ve come to see their quirks not as flaws but as unique features of who they are. I’ll call my mom when I’m struggling across a tricky math problem, knowing she’ll light up with excitement at the opportunity to assist me with her expertise. I love watching my dad pour himself into his ham radio community, where friendships are forged without the pressure of eye contact.That’s why, when I first heard RFK Jr vow to the Trump administration to find the cause behind the so-called “autism epidemic”, describing it as a “cataclysm”, I got scared. Was the person in charge of the federal government’s healthcare apparatus really describing my parents as victims of an illness that we, as a society, have let get out of control?Later that week, he doubled down, calling autism spectrum disorder a “preventable disease” that “tears families part”, citing the growing rates of ASD among children: one in 31 kids in 2022, compared with one in 36 kids in 2020. “These are kids who will never pay taxes. They’ll never hold a job. They’ll never play baseball. They’ll never write a poem. They’ll never go out on a date. Many of them will never use a toilet unassisted.”Autism is, in fact, being diagnosed more than ever before, but scientists largely attribute this to increased awareness and a broader diagnostic criteria for the disorder. “When I started in this field in the late 60s, autism was a last resort diagnosis,” says Dr Catherine Lord, a clinical psychologist whose primary focus is ASD. “It was primarily given to kids with intellectual disabilities.”It’s also true that people in my generation have more autism diagnoses than our parents. But there are plenty of us out there who suspect our parents may have been on the spectrum, even though they were never formally evaluated. “It’s rare for a parent first to be diagnosed with autism, and then a child realizes they are also autistic,” Lord says. “It’s much more common for a parent to realize they’re on the spectrum after their kid’s been diagnosed.”RFK Jr’s blanket description of 2% of the population fails to take into account the wide spectrum of symptoms that people with autism experience. Some have higher needs than others. Many are able to mask their symptoms. Some are non-verbal – about 30%, according to the National Institutes of Health. All deserve to live in a society where they are understood, recognized and supported – not categorized, as RFK Jr describes, as a “tragic” aberration that needs to be snuffed out.The federal government says it is committing resources to finding the cause behind ASD (a condition that has been studied since the 1940s and is overwhelmingly attributed by scientists to genetics) and that it is starting an autism database to track the private medical information of numerous Americans. At the same time, it is also poised to cut funding for autism research and support.Slashes to the Department of Education and National Science Foundation mean less money for special needs kids and intervention programs. Reduced funding to the Substance Abuse and Mental Health Services Administration means autistic people, who are particularly vulnerable to mental illness, will have less access to mental health services. Meanwhile, there are concerns that Congress will cut Medicaid coverage, which would lead to less behavioral support for autistic people, especially children and low-income families. “It just seems so contradictory,” Lord says.By saying autism is a “preventable disease” rather than a complex neurodevelopmental disorder, RFK Jr further stigmatizes an already vulnerable population and threatens to set back a decades-long effort to bring ASD into public awareness and acceptance. Schools already struggle with how to incorporate autistic children into everyday learning, and few programs exist (let alone are publicly funded) specifically for neurodivergent kids. An infinitesimal percentage of workplaces recognize the unique needs of their neurodivergent employees, making it difficult for people with ASD to find and keep employment.Neither set of my grandparents understood their children were autistic, and so the support my parents received was limited. My mom’s parents shrugged their shoulders and categorized her as weirdly obstinate. My dad’s parents treated him like a prodigy, which, although a kinder approach, fostered a superiority complex and a host of anti-social behaviors, making it tough for him to find friends. As adults, both my parents struggled to hold down full-time employment at office jobs, presumably in part because their workplaces probably adhered to a rigid social compact and failed to recognize their unique needs.These days, my parents have learned to mask their autism to varying degrees. My father eventually taught himself how to sustain eye contact with others, and can now hold a conversation with minimal downward glances. They both, to a degree, have become more socially aware and work for themselves.So, no, autism did not ruin my family, as RFK Jr claims. If anything, their conditions have made me a more empathetic, understanding adult, which I believe makes me a better journalist, friend and daughter. But, I sometimes wonder: what would my parents’ lives have been like if society had made more room for them and others like them? I suspect that in a less ableist world, they would have led happier childhoods. And, I think, so too would I.

      Deborah Bloom is a text and video journalist who covers breaking news and human interest stories about gender, culture, mental health and the environment More

    • 113 Shares169 Views

      in US Politics

      RFK Jr’s autism study collecting Americans’ private medical records

      by

      The National Institutes of Health (NIH) is collecting the private medical records of many Americans from several different federal and commercial databases to give to researchers for US health secretary Robert F Kennedy Jr’s new autism study.With this information being included in the database, the NIH is also reportedly crafting a new registry to track those with autism, per CBS News.The health agency claims it was doing so to fulfill a controversial promise the secretary of health made to root out the cause of autism by September, despite some experts saying that Kennedy’s goal is not even feasible.“If you just ask me, as a scientist, is it possible to get the answer that quickly? I don’t see any possible way,” Dr Peter Marks said on CBS’s Face the Nation earlier this month.On the collection of data, the director of NIH, Jay Bhattacharya, told advisers during a presentation on Monday that the aim was to help researchers study autism by giving them access to “comprehensive” patient data and health records.He added that these records would cover a “broad range” of people across the US.“The idea of the platform is that the existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource,” he said in the presentation. “Even data resources that are within the federal government are difficult to obtain.”Bhattacharya added that the NIH was also discussing a potential expansion of the agency’s access to data from the Centers for Medicare and Medicaid Services.The study also plans to link medication records from pharmacies, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers.Between 10 and 20 outside research teams will be selected and given grants to study the data, according to CBS News.Bhattacharya said that compiling this data could also potentially give health agencies a window into “real-time health monitoring” on Americans for studying other health problems beyond autism.“What we’re proposing is a transformative real-world data initiative, which aims to provide a robust and secure computational data platform for chronic disease and autism research,” he said.Bhattacharya echoed Kennedy’s words that some answers as to the cause of autism would be discovered by September, but he added that the study would be “an evolving process”.The news followed Kennedy’s first press conference in which he claimed that a significant and recent rise in autism diagnoses was evidence of an “epidemic” caused by an “environmental toxin” despite the evidence collected by health researchers.The Guardian has contacted the NIH for comment. More

    • 163 Shares199 Views

      in US Politics

      Pro baseball player Tarik El-Abour is everything RFK Jr says he can’t be

      by

      When Tarik El-Abour was in middle school, his teacher asked him and his classmates a simple question. What do you want to be when you grow up? When it was time for him to answer, El-Abour gave a reply that thousands of children have said before. He wanted to be a baseball player. But his teacher shot back with something less than encouraging: “You’d better have a Plan B.” El-Abour, who was diagnosed with autism at the age of three, remained undeterred. Rather than listening to his pessimistic instructor, he distanced himself from her.He thought that if he continued to talk to her, she might convince him he was unable to achieve his goal. In the end, he was right, and the teacher was wrong. El-Abour grew up to become a baseball player after receiving a degree in business administration from Bristol University in California. He first played professionally in the Empire League, where he was named rookie of the year in 2016 and was an All-Star in 2017. Then, in 2018, he signed a deal with the Kansas City Royals, a franchise just three years removed from winning the World Series. He played outfield in the minor leagues during the 2018 season, flourishing under the mentorship of JD Nichols of World Wide Baseball Prospects and Reggie Sanders of the Royals, becoming the first recorded autistic player in MLB history.All of this will be news to the US health and human services secretary, Robert F Kennedy Jr, who said earlier this month that: “Autism destroys families, and more importantly, it destroys our greatest resource, which is our children … These are kids who will never pay taxes. They’ll never hold a job. They’ll never play baseball. They’ll never write a poem. They’ll never go out on a date. Many of them will never use a toilet unassisted.”El-Abour chooses to let Kennedy’s comments slide off him.“When it comes to politics,” the 32-year-old tells the Guardian, “I’m so used to crazy stuff being said by people. I’m just in a spot where it doesn’t really get to me. I get that’s just how some things are. The way I look at it, the only things I care about are the things I have control over – like baseball and those I care about most.”El-Abour, who is now playing in the Zone 22 scouting league in Los Angeles and hoping for another shot at the majors, says he doesn’t know what it’s like not to be autistic. But he explains that the way his brain works helps him focus and embrace repetition – both valuable qualities for a ballplayer. “Baseball requires a lot of repetition to be good at it,” he says. “And people with autism tend to be repetitive. I guess that’s maybe where it benefits me.”Kennedy, a fan of doing his own research, may want to note that El-Abour is not the only autistic professional athlete in the US. Tony Snell, who also has two autistic sons, was diagnosed with autism. And he had a nine-year NBA career, playing on several teams, including the Chicago Bulls and New Orleans Pelicans. “Learning I have [autism] helped me understand my whole life,” said Snell in a recent interview. “This is why I am the way I am.” Joe Barksdale, who revealed in 2022 that he was diagnosed with autism, played eight years in the NFL. And Nascar driver Armani Williams also stated publicly he is autistic. Of course, there are more autistic athletes coming up in the ranks, too.“It was a surprise when the [Kennedy] news came out last week,” El-Abour’s mother, Nadia, tells the Guardian. “I wanted to post something then Tarik said, ‘No, the [media] will take care of it.’ Tarik started laughing. He goes, ‘Oh, wow, why did he [Kennedy] choose baseball?’”She says that, unlike some politicians today, her son is very logical. Many autistic people, she explains, don’t attach emotion to the truth. Something simply either is true or it isn’t. “They can’t understand why we don’t accept the truth,” Nadia says. It’s the same reasoning El-Abour employed when flouting his middle school teacher’s “Plan B” idea. In fact, he bristled at it so much that he didn’t even want to be around the energy of the school building, often crossing the street rather than walk near it.“He doesn’t see obstacles,” Nadia says of her son. “He doesn’t think of ‘I can’t.’ He just thinks, ‘How … how can I do that?’”El-Abour, who was non-verbal until he was about six years old, started playing baseball later in life, around 10 years old. At first, he was unsure if he liked the game, which his father signed him up for. But when he got into the batter’s box, something happened. He even gave up his spot as pitcher on the team because he was told pitchers don’t bat in the pros. From then on, he arranged his whole life around things that would make him be a better player. He painted an X on the garage to practice his throwing accuracy. He took fly balls into the night with his coaches. Rather than, as Kennedy would have us believe, baseball was something unattainable for El-Abour, it helped him blossom.Indeed, El-Abour’s life is a far cry from the picture Kennedy Jr and others have tried to paint. But despite any number of ignorant comments, El-Abour says he’s grateful for who he is and proud of what he’s achieved so far in his life. He says “it’s an honor” that people ask him about his autism and he’s glad he can add to the conversation. “It’s very humbling,” El-Abour says, “to be possibly making an impact. Baseball really gave me something that I enjoy and love doing. It always gives me something to be motivated for and to be better at each day throughout my life. And that’s really good.” More

    • 225 Shares109 Views

      in US Politics

      RFK’s statements prove autistic people and their families everywhere should fear Trump and his allies | John Harris

      by

      In the recent past, Robert F Kennedy Jr has said that Donald Trump is “a terrible human being” and “probably a sociopath”. But in the US’s new age of irrationalism and chaos, these two men are now of one voice, pursuing a strand of Trumpist politics that sometimes feels strangely overlooked. With Trump once again in the White House and Kennedy ensconced as his health and human services secretary, what they are jointly leading is becoming clearer by the day: a war on science and knowledge that aims to replace them with the modern superstitions of conspiracy theory.Nearly 2,000 members of the US’s National Academies of Sciences, Engineering, and Medicine have warned of “slashing funding for scientific agencies, terminating grants to scientists, defunding their laboratories, and hampering international scientific collaboration”. Even work on cancer is now under threat. But if you want to really understand the Trump regime’s monstrousness, consider where Kennedy and a gang of acolytes are heading on an issue that goes to the heart of millions of lives: autism.Last Wednesday, Kennedy spoke at a press conference staged in response to a report about apparently rising rates of autism published by the US’s Centers for Disease Control and Prevention. And out it all came: an insistence that autism is an “epidemic” and a “preventable disease”, and – in complete defiance of the science – that the root cause lies with “environmental toxins”. A range of new studies, he said, will begin reporting back in September: with the same banality that defines his boss’s promises on international conflict and global economics, he told his audience that answers would be presented to the public “very, very quickly”.Most of the people present would have been aware of Kennedy’s past support for the thoroughly discredited idea that autism is somehow linked to the use of vaccines. As he spoke, they were presumably reminded of the occasions when he has talked about autistic people with a mixture of disgust and complete ignorance. Autism, he said, “destroys” families; today’s autistic children “will never pay taxes. They’ll never hold a job. They’ll never play baseball. They’ll never write a poem. They’ll never go out on a date. Many of them will never use a toilet unassisted.” Those comments have rightly triggered a huge backlash. But what has been rather lacking is a broader critique of Kennedy’s ideas, and how they go deep into aspects of the US’s culture and politics.As I explain in the book I have just written about my autistic son, James, I began my immersion in autism and the arguments that swirl around it 15 years ago, when he received his diagnosis from the NHS. That came amid visits from speech therapists and educational psychologists, and increasingly futile appointments with a paediatrician, who in effect told us to go away and manage as best we could. But straight away, I was also aware of a much more exotic subculture rooted in the US, based around the idea that autism could somehow be cured, and an array of regimens and pseudo-treatments.The anxieties surrounding Andrew Wakefield’s disgraced work on a link between autism and the measles, mumps and rubella (MMR) jab were still easy to pick up. I read about “chelation”: injecting chemicals into the bloodstream, supposedly to remove the toxic preservatives used in vaccines from the body and send autism on its way. It was easy to find stuff about impossibly restrictive diets, and the terrifying notion of forcing people to drink diluted bleach. These ideas, moreover, came with claims of endless government cover-ups: proto-Maga stuff, which had long been snowballing online.That said, the underlying logic of all this quackery was encouraged by much more mainstream voices. By and large, British campaigning and research tends to focus on what autism actually is, and how to make autistic lives better – whereas in the US, very powerful forces have seen autism as a disease. In 2006, President George W Bush signed a legislative package tellingly called the Combating Autism Act, hailed by one of its supporters as “a federal declaration of war on the epidemic of autism”. At that point, there were initiatives and organisations with names such as Cure Autism Now and Defeat Autism Now! All this had already spawned the autistic self-advocacy movement that continues to loudly contest such ideas, but its appeal obviously still lingers.If I were in the US, I would now have two big worries. As well as constant attacks on the public sector that have already hacked back help for autistic people, there is a huge question about what Kennedy’s nonsense might mean for other areas of federal government policy, and the kind of MMR-style panics his “answers” on toxins might trigger. But some of those concerns also apply to the UK, thanks to the ease with which ideas travel, and how Trump and his allies influence politics across the world.Kennedy’s pronouncements are not only about what causes autism; they also reflect an age-old perception of autism as an aberration, and many autistic people as “ineducable” and beyond help. This surely blurs into populists’ loathing of modern ideas about human difference: once you have declared war on diversity, an attack on the idea of neurodiversity will not be far away. It also chimes with one of the new right’s most pernicious elements: its constant insistence that everything is actually much simpler than it looks.Which brings me to something it feels painful to have to write. Autism denotes a fantastically complicated set of human traits and qualities, but that does not make them any less real. It presents with and without learning disabilities, and can be synonymous with skills and talents. Its causes (if that is even the right word) are largely genetic, although careful research is focused on how those heritable aspects might sometimes – sometimes– intersect with factors during pregnancy, and with parental age. And obviously, those characterisations barely scratch the surface, which is some indication of the absurdity of Kennedy’s position, and how dangerous it is.On this side of the Atlantic, there are very good reasons why many of us who have families with autistic members feel deep anxiety about the constant shunting of politics to the right. The care, education and official understanding of the people we love and sometimes look after is fragile enough already: what would happen if their fate was in the hands of the Trumpist know-nothings of Reform UK, or Alternative für Deutschland? The American tragedy unfolding in front of our eyes shows the future we now have to avoid, and the kind of people we may have to fight, who will not just be arrogant and inhumane, but set on taking us back to a failed past: terrible human beings, you might call them. More

    • 125 Shares119 Views

      in Elections

      Experts Doubt Kennedy’s Timetable for Finding the Cause of Autism

      by

      The nation’s health secretary announced that he planned to invite scientists to provide answers by September, but specialists consider that target date unrealistic.Robert F. Kennedy Jr., the nation’s health secretary, pledged on Thursday to seek out experts globally to discover the reasons for the increasing rates of autism in the United States.“We’ve launched a massive testing and research effort that’s going to involve hundreds of scientists from around the world,” Mr. Kennedy announced at a cabinet meeting held by President Trump. “By September, we will know what has caused the autism epidemic and we’ll be able to eliminate those exposures.”“There will be no bigger news conference than that,” Mr. Trump replied.But scientists who have worked for decades to find a cause greeted Mr. Kennedy’s predicted timeline with skepticism.They said that a single answer would be hard to identify in a field of possible contributors including pesticides, air pollution and maternal diabetes.Dr. Philip Landrigan, a pediatrician and expert on environmental toxins, pointed to the current mass layoffs and cutbacks for research at Mr. Kennedy’s Department of Health and Human Services as one reason for doubting such quick progress.“Given that a great deal of research on autism and other pediatric diseases in hospitals and medical schools is currently coming to a halt because of federal funding cuts from H.H.S.,” he said, “it is very difficult for me to imagine what profound scientific breakthrough could be achieved between now and September.”We are having trouble retrieving the article content.Please enable JavaScript in your browser settings.Thank you for your patience while we verify access. If you are in Reader mode please exit and log into your Times account, or subscribe for all of The Times.Thank you for your patience while we verify access.Already a subscriber? Log in.Want all of The Times? Subscribe. More

    • 200 Shares189 Views

      in US Politics

      My child has autism. Trump and RFK Jr linking it to vaccines scares parents like me

      by

      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