Latest news with #AutismScienceFoundation
CNN
07-05-2025
- Health
- CNN
HHS to build Medicare, Medicaid database on autism, other chronic illnesses
See all topics The US Department of Health and Human Services on Wednesday unveiled a pilot program for the National Institutes of Health to tap into Medicare and Medicaid data in its search for the root causes of autism The database — which HHS said will draw from insurance claims, medical records, and data from wearable technology such as smartwatches — is one of the first steps in HHS Secretary Robert F. Kennedy Jr.'s bid to find the causes of autism 'by September.' Yet early signals from health officials that they would build a database to track autism were met with swift rebuke from advocacy organizations and doctors. NIH Director Dr. Jay Bhattacharya's initial description last month of a 'new autism registry' with 'broad coverage' of the U.S. population raised red flags and questions about privacy, the Autism Science Foundation said in a statement shortly after the news. The Autism Self Advocacy Network lambasted the project as an example of how this administration has 'completely frozen out autistic people.' HHS nodded to those concerns in its announcement Wednesday. It said NIH and Centers for Medicare & Medicaid Services will start with a data use agreement focused on Medicare and Medicaid enrollees diagnosed with autism spectrum disorder, then establish a 'secure tech-enabled mechanism' that will share data with 'timely, privacy and security compliant data exchange.' The agencies will eventually build the pilot database out to share data on chronic illnesses and their economic burden, HHS said. 'Ever since the registry was first announced, there was an enormous sense of fear in the autism community, and they have concerns: Who's going to have access to data? How are those data going to be used?' Helen Tager-Flusberg, director of Boston University's Center for Autism Research and leader of the Coalition of Autism Scientists, told CNN. There are also limitations to CMS data, Tager-Flusberg said. 'If you're talking about Medicare and Medicaid, that only focuses on certain portions of the population.' Medicaid is a federal and state partnership covering low-income adults and children. Medicare is a federal program primarily for Americans 65 and older, although younger people with disabilities are also enrolled. There are permissible uses of CMS data for medical research but very stringent privacy laws, Jeff Wurzburg, former HHS general counsel and a health care regulatory attorney at Norton Rose Fulbright, told CNN before Wednesday's announcement. 'One of the primary, overarching goals of CMS is protection of the beneficiary. So it's certainly legitimate and reasonable to raise questions about how this data will be collected and protected.' Autism advocates and scientists have also questioned Kennedy's claim that health agencies would find the causes of autism by September, a timeline that Bhattacharya already appeared to walk back. 'Science happens at its own pace. We're accelerating and cutting the red tape that normally comes with putting together a scientific program like this,' he told reporters on April 22. 'We'll have, I hope, in September, something that in place where the scientists that want to want to compete for these awards will be able to do that.'
Yahoo
21-04-2025
- Health
- Yahoo
Parents hit back at RFK Jr.'s claim that ‘autism destroys families': ‘Don't ever say my children are a burden'
Robert F. Kennedy Jr. is leading the latest public discourse on autism—holding a press conference last week at which he vowed to get to the bottom of the 'toxins' he believes are causing the spike in prevalence and decrying how the neurodevelopmental disorder affects society. 'Autism destroys families,' he said, 'and more importantly, it destroys our greatest resource, which is our children.' But plenty parents of affected kids were not impressed. 'I just look at the source—this is a man who strapped a whale's head to the top of the family car,' Kim Covell, autism advocate and mom to a 26-year-old mostly nonverbal autistic son, tells Fortune, pointing out that his comments ignore 'proven science' and explaining that she is taking RFK Jr.'s comments with a grain of salt. 'I honestly think that science and reason will prevail in the end—and this is just a blip, an extremely unfortunate blip, on the autism timeline.' Some parents, though, were outraged. 'Autism didn't 'destroy my family,'' Stephanie Hanrahan, self-described autism mom, activist, and TEDx speaker shared on Instagram. 'It is incredibly dangerous to say autism destroys lives. We cannot make broad statements (and laws) based off individual experiences. It is careless and insensitive. It dehumanizes a group of people who are NOT an epidemic because they are NOT a disease. They are simply a different neurotype.' Her autistic son plays baseball, she added, and her autistic daughter is an advocate who plays the piano and writes poetry. 'Clean the water and food. Improve environmental toxins. Do research,' Hanrahan added, 'But don't ever say my children are a burden.' Official organizations also put out statements responding to Kennedy's statements. The Autism Society called them 'harmful, misleading, and unrealistic,' stressing that the way he spoke about autistic individuals was 'stigmatizing' and that the idea that vaccines cause autism (a specific allegation that RFK Jr. did not mention during the press conference, referring to 'medicines' instead) 'has been thoroughly debunked.' The Autism Science Foundation noted that his assertions lacked scientific evidence, and that he 'made a series of clear misstatements during his press event, including that adults with profound autism don't exist.' Autism Speaks, meanwhile—which has faced its own controversies in the past, including for allegedly promoting stigma—called the press conference 'extremely disappointing and damaging,' noting that it joined many others 'in their concern with how the autistic community is being misportrayed.' Much of the fireworks took place on social media, where angry and disappointed parents took on RFK Jr.'s assertions. Kate Swenson, coauthor of New York Times bestselling parenting memoir Autism Out Loud and mother of a 14-year-old with autism, also took to Instagram. She shared an anecdote about how her younger son, 12, reacted to RFK Jr.'s comments: ''Autism didn't wreck our family, did it, Mom?' … I honestly froze for a second. Before I could answer he started talking again. 'I don't think it did, Mom. Cooper didn't wreck anything. Our family is good.' And then he quickly said, 'But it is hard sometimes.' … The siblings are so wise. They are always learning, watching, and absorbing.' Swenson added, 'I think sometimes when topics are in the headlines we forget that we are talking about real people and families.' On a different Swenson post, another mom of a son with autism, Maddie Curry, left a comment, noting that RFK Jr.'s 'rhetoric' is 'extremely dangerous for the entire autism community,' and stressing that there has already been a lot of research on autism and its causes, including studies that her family has participated in. 'The implication that RFK Jr. is the first person to care is so painful for families and for the scientific community,' she wrote. 'We also have to hold our politicians to the minimum standard—speak about our autistic community with dignity and respect.' Nicole Gottesmann, a blogger and advocate for her nonverbal autistic son, posted that she had been trying to block out the news lately, but that while on vacation with her family, she caught RFK Jr.'s press conference—turning her happiness into 'sadness, despair, and fear.' 'Leading with how these individuals will never pay taxes or have a job made it clear that the intention is to eradicate autism. He stated that autistic individuals will never go on a date, write a poem, play sports, etc. He further stated that autism destroys families! I am here to say this is just untrue and disgusting on so many levels,' she wrote alongside photos of herself and her partner with their son. She added, 'He is nonspeaking, and his life has so much meaning. Just like every other autistic individual! How dare he judge my child, my family, and determine that Gabe is worthless. My family was not destroyed by autism … RFK's words have caused many of us pain.' Stephanie Loglisci, a mother of twins, posted to her 31,000 Instagram followers, 'When my twins were diagnosed with autism, it gave me the gift of better understanding and celebrating the unique way they experience the world … The only thing destroying our belief is the lack of knowledge, misinformation, and ignorance that the U.S. government is spreading about our kids.' While Brittany, head of the popular Instagram account Autism Mama's Crew, posted simply: 'RFK's comments were DANGEROUS,' and 'Autism doesn't destroy families. The lack of support does.' In a Sunday opinion piece for the Guardian, John Harris, father of an autistic son, agreed that Kennedy's words are dangerous—and that they, for him, prompt fear. '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,' he writes. '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.' There were, however, some parents of kids with autism who were in agreement with RFK Jr. and pleased to see his attention on the issue. 'Autism does destroy families,' posted a mother in the comments section of the Autism Mama's Crew post. 'As an autism mom I feel devastated to see my children not meet their milestones. I wish they didn't have autism.' Another added: 'This is the truth no one wants to say/face! YES we love our babies … but I literally wish every day my two boys weren't autistic … Autism is beautiful, but it is NOT our friend.' Mary Holland, attorney, anti-vaccine activist, mother to a grown son with autism, and now CEO of the RFK Jr.–founded Children's Health Defense, said in a video posted to the organization's website: 'I have been waiting for that speech for over 20 years, so I am very grateful to the secretary for finally saying from an important public platform that this is an epidemic and we need to find the causes and we need to stop it.' On X, a man posted a photo of his daughter with her face obscured. 'This is my daughter. She has autism. She cannot dress, groom, or toilet herself,' he wrote. 'She hasn't spoken a word in her life. Her nonverbal communication is touches and gestures. She's the best thing in my life, but there is something wrong with her. Thank you, RFK.' On Sunday, Kennedy clarified some of his comments with an appearance on Fox News. 'There are many kids with autism who are doing well,' he said. 'I was referring specifically to that 25%, the group that is nonverbal.' Still, for many, the damage was done. 'It triggered me in ways I can't even describe,' actor, advocate, and autism mom Holly Robinson Peete posted about the press conference to her 1.5 million Instagram followers. She recalled the day her now adult son was diagnosed, at age 3, when she believed he would never be able to do many things in the future. 'Now, he's mostly checked off and shattered most of the 'nevers' off of that list,' she said. 'So when I hear someone like Robert F. Kennedy describe our kids as family destroyers, I feel the weight of every parent who's ever had to fight three times, four times as hard just to prove their child's worth. It plays into every stereotype and stigma every person with autism has ever had to fight.' What RFK Jr. is peddling here, she added, 'is not just ignorance, it is institutionalized hopelessness.' More on autism: RFK Jr. blames these 5 environmental toxins for a spike in autism cases Autism treatment is exploding across the U.S.—and now 1 in 31 kids are getting diagnosed Researchers uncover a link to autism—and it isn't vaccines This story was originally featured on
Yahoo
21-04-2025
- Entertainment
- Yahoo
Rosie O'Donnell Slams RFK Jr. After COVID And Autism Impact Comparison
Rosie O'Donnell is not Robert F. Kennedy Jr.'s biggest fan right now. The comedian is raining down heavily on the politician for his insensitive comments comparing the effects of autism and COVID-19 on the American population. Robert F. Kennedy Jr. famously dropped his presidential ambition last year to throw his weight behind Donald Trump's campaign and earn him the top seat in the Oval Office. Donnell replied to Robert's comment via a post on her Instagram. The comedian shared a selfie with her 12-year-old autistic daughter, Clay, who wore a red sweater and a beanie to match. She accompanied the picture with another slide, spreading more positive awareness about autism. The slide came with the words: "Autism, the one where being different is what makes you beautiful." In the caption, Donnell gave RFK a piece of her mind, writing, "robert kennedy u should be ashamed of urself #autismawarenessmonth." The post has garnered over 17,000 likes and hundreds of comments supporting her stance on RFK's statement. "He's a public health threat and should be fired!" wrote one commenter. Another user stressed that RFK and his peers are not "self-aware enough to feel anything but arrogance." A third Instagram user noted, "He should focus his expertise on addiction since that is something he is familiar with. Clearly, he knows nothing about autism." As noted by PEOPLE, Robert expressed in a recent interview on The Cats Roundtable radio show that the impact of autism on American lives surpasses that of COVID-19. He emphasized that while COVID primarily affected older populations, autism begins to impact children at a crucial stage in their development. The government official stressed that the ailment significantly affects their lives, families, and communities. The secretary highlighted the substantial economic burden of autism, predicting that it could cost the economy up to $1 trillion annually by 2035, although he did not provide sources for this claim. His remarks followed a press conference held on April 16, where he expressed the view that autism "destroys families," suggesting that affected individuals would struggle to achieve typical life milestones. His statements have drawn criticism from autism advocates, who argue that such rhetoric perpetuates damaging stereotypes and negative perceptions about individuals with autism and their potential contributions to society. Alison Singer, president of the Autism Science Foundation also criticized remarks made by the secretary. According to her, Robert's comments suggested that individuals with autism lead worthless lives, a conclusion she termed that "couldn't be further from the truth." A recent CDC study revealed that one in 31 children in the U.S. is diagnosed with autism by age eight, marking an increase over the past two decades. However, experts believe that this rise is not indicative of more children developing autism but rather reflects improved diagnostic capabilities. Dr. Alex Kolevzon, a child and adolescent psychiatrist at the Seaver Autism Center in New York City, reassured parents, stating that the situation does not signify an epidemic of autism. As noted by The Blast, Robert's decision to align himself with Trump during his campaign was met with immediate disapproval from his family. In a joint statement, his relatives, including Kathleen Kennedy Townsend, Courtney Kennedy, Kerry Kennedy, Chris Kennedy, and Rory Kennedy, made it clear that his choice did not reflect their values. They emphasized their support for Kamala Harris and Tim Walz, advocating for an America rooted in hope, individual freedom, and national pride. They described Robert's endorsement of Trump as a betrayal of their family's principles, dubbing it a "sad ending to a sad story." Additionally, Jack Schlossberg, John F. Kennedy's grandson and Robert's cousin, criticized Robert's decision on social media, labeling him a sell-out. Last August in Arizona, the politician announced that he would suspend his campaign. According to him, he no longer saw a "realistic path of electoral victory" due to relentless censorship and media control. He expressed concern for his staff and volunteers, emphasizing that he could not justify the extended hours and financial demands on his donors without a clear chance of winning. Despite the suspension, he confirmed that his name would still appear on ballots in most states and revealed his intention to support Trump in the upcoming election. This decision marked a significant shift in his political stance, as just three months prior, he had openly challenged Trump to a debate at the Libertarian National Convention. Trump's response was to label him a "Democrat Plant" and a "Radical Left Liberal" on his social media platform, Truth Social. How will RFK Jr. respond to the clapbacks?
NBC News
29-01-2025
- Health
- NBC News
Autism community fears RFK Jr. would set back decades of progress
For decades, the scientific community has worked to dispel a thoroughly debunked theory that vaccines cause autism and finally shift its focus to find true potential causes. But now, autism advocates say they are fearful that if Robert F. Kennedy Jr. is confirmed as health and human services secretary, it could undermine years of progress in unlinking autism and vaccines, while potentially diverting precious research dollars to a theory already discredited by hundreds of studies worldwide. They warn he would wield vast influence over who sits on committees and steer policy. And some condemned Kennedy's past rhetoric around the disability, calling it stigmatizing and insulting. Alison Singer, founder of the Autism Science Foundation, said she welcomes an examination into potential causes of autism, but focusing on vaccines could be dangerous for children. 'A new crop of parents will be afraid, who may believe that vaccines could harm their children, potentially cause autism, and those parents might withhold life saving vaccines from their children,' Singer said. She said the concern is that 'funds are spent re-examining what we know does not cause autism, and are directed away from looking in new potential areas of what's causing autism. There's so much that we need to fund when it comes to autism research.' Kennedy is scheduled to begin his Senate confirmation hearings on Wednesday. He's expected to face tough questions about the misinformation he has promoted around public health over the years, including his claims about vaccines. Kennedy, who founded an anti-vaccine nonprofit and grew into one of the most prominent anti-vaccine activists in the world –– a crusade from which he and associated groups have made millions of dollars –– has prominently advanced a false contention that vaccines cause autism. 'I do believe that autism comes from vaccines,' Kennedy asserted to Fox News in 2023. He went on to say that his position was misunderstood; he just wants to test the science behind them. But it's Kennedy who rejects the science in front of him, critics say. 'Are we [also] reviewing the question about whether the earth is flat? This is settled science,' said Rep. Kim Schrier, a Washington Democrat who previously worked as a pediatrician. 'We already looked into vaccines. They don't cause autism, but let's look elsewhere. And elsewhere might be genetics. It might be the fact that now we're putting a lot more kids under the umbrella of autism who never would have fallen under that umbrella before … It could be a lot of things, but bringing up settled science is only going to undermine confidence in vaccines, decrease immunization rates and put the entire population at risk.' As the head of HHS, Kennedy would hold massive sway on the direction of health policy in the United States. He would lead number agencies, including the Food and Drug Administration, the Centers for Disease Control and Prevention and the National Institutes of Health. President Donald Trump's pick for the CDC, former Florida Rep. David Weldon, is further fueling fears because of his own past statements doubting vaccine safety. Colliding with history Kennedy often begins his argument that vaccines cause autism by spinning a narrative that he didn't know severely autistic children when he was growing up, and he doesn't know any at his age now. The increased incidence, he concludes, coincides with the prevalence of childhood vaccinations. 'I bet you've never met anybody with full-blown autism your age,' Kennedy told podcaster Joe Rogan in 2023, launching into a script he often uses in public appearances. 'You know, head-banging, football helmet on, nontoilet trained, nonverbal. I mean, I've never met anybody like that at my age, but in my kids' age now, one in every 34 kids has autism. And half of those are full blown.' However, people with developmental disabilities were for decades institutionalized — and, in Nazi Germany, worse — or otherwise kept out of the public eye, a far cry from the integrated schools many public systems attempt to achieve today. The practice of institutionalizing children with disabilities was particularly prevalent in post-war America, and often in facilities with poor conditions. One example of the gap between public understanding of kids with disabilities came in 1965, when Kennedy was about 11 years old. His father, then a U.S. senator from New York, denounced the treacherous conditions at Willowbrook State School. In one of the most shameful exposés in U.S. history, disabled children were found to be living in filth, amid abuse and overall horrific conditions, sparking nationwide outrage. 'I think all of us are at fault and I think it's just long overdue that something be done about it,' Robert F. Kennedy Sr. said at the time of Willowbrook. Zoe Gross, director of advocacy with the Autistic Self-Advocacy Network, noted that the autism diagnosis was still evolving in the '60s. She held up Willowbrook as an example of how those with developmental and other types of disabilities were once hidden from society. 'If you look at the video of the conditions that the people in Willowbrook were in, you'll see the people that RFK Jr. describes as having been missing through his childhood. And you'll see where they went, where they were forced to go,' Gross said. Ignoring science Autism diagnoses have risen from about 1 in 150 children in 2000, to 1 in 36 today. In that period, the definition of who is autistic broadened considerably, capturing a dramatic span of abilities. It now ranges from individuals who live independent lives, to individuals who are nonspeaking or who face serious medical challenges like seizures. Researchers point to a strong genetic link to the complex disorder and have said there's much more research needed to determine what, if any, environmental factors play into it. Autism Speaks, one of the nation's largest autism research organizations, is one group that has called for more research into the role that factors like exposure to chemicals and parental age potentially play. 'We know autism is highly heritable, so the most needed research is on how genes and the environment interact. Genetic variations may lead to changes in underlying biology, making those individuals more resistant or susceptible to different exposures,' Singer, from the Autism Science Foundation, said. Those exposures could include toxicants, like insecticides or plasticizers; pharmacological, like medications; and possibly sociological, such as low socioeconomic status or not receiving adequate medical care, Singer suggested. 'Genetics research is far ahead of environmental research mostly because we don't have good ways of measuring what we are exposed to in the environment,' she added. 'That needs to improve. We also need to understand how environmental factors affect DNA structure and DNA expression.' In Kennedy's conversation with Rogan in 2023, he contended that it was others who ignored scientific studies in the field. 'And everybody will say, 'Oh, there's no study that shows autism and vaccines are connected.' That's just crazy. You know, that's people who are not looking at science,' Kennedy said. Others say that a refocus on vaccines as a cause for autism could divert funding from needed areas of research. Because of the last vaccine scare, some facets of autism research are behind, including how to help autistic individuals who have sleeping complications, gastrointestinal issues, bathrooming delays or seizures or whether there's a link between autism diagnoses and the development of Parkinson's later in life, Gross said. 'Our concern is, it's already so difficult to direct funding to these understudied topics,' she said. 'We don't want to see vaccines become a stranglehold on funding and choke off this very limited funding that these really critical questions are already getting.' Parental concerns about a tie between vaccines and autism spiked after a 1998 study by Andrew Wakefield deeming a link between the MMR shot and autism. It was later found to be fraudulent and retracted years later. Among the issues, Wakefield failed to disclose financial conflicts of interest in the study. In the intervening years, fears swept through the world of intellectual disabilities, not just prompting vaccine hesitancy but steering research dollars toward potential links between vaccines and autism. That put the community behind on research-based treatments for autism and interventions, advocates say. Hundreds of studies done across decades and around the world have found vaccines to be safe. These studies followed fluctuating theories about what in the vaccines may be potentially unsafe. The predominant hypotheses shifted from blaming the Measles-Mumps-Rubella (MMR) vaccine to homing in on the preservative thimerosal that is used in some vaccines to looking at the volume of vaccines children are given at one time. Each of the theories was tested and dismissed in scientific studies, which included research comparing the incidence of autism among vaccinated children to those who had not received certain vaccines. Despite those findings, Kennedy supports the theory that ingredients in vaccines or the battery of vaccination schedules have triggered the rise. In a 2023 podcast interview, Kennedy was asked if he thought any vaccine was effective. His response: 'I think some of the live virus vaccines are probably averting more problems than they're causing. He then added: 'There's no vaccine that is safe and effective.' A spokesperson for Kennedy did not respond to a request for comment. Stigmatizing language Trump himself suggested late last year on NBC News' 'Meet the Press' that in choosing Kennedy to lead HHS, he wanted him to look at the discredited link between vaccines and autism. Trump previously told Fox News — more than once — that he personally knew a family who 'had a beautiful child' before receiving a 'monster shot' of vaccinations then 'got very, very sick, now is autistic.' Among the concerns in the autism community is that the kind of language both Trump and Kennedy use to describe the complex neurological condition is disparaging. 'He uses this belief that vaccines cause autism to spread a very stigmatizing and negative image of autism, where he says, for example, someone has a vaccine and their 'brain is gone,'' Gross said of Kennedy. 'And by saying their brain is gone, he means they're autistic.' Gross, who is autistic, was referencing a 2015 remark by Kennedy in which he compared vaccinating children to the Holocaust. He later apologized for his remarks. 'They get the shot, that night they have a fever of 103 [degrees], they go to sleep, and three months later their brain is gone,' Kennedy said then. 'This is a Holocaust, what this is doing to our country.' Gross called it 'fearmongering,,' stating: 'The idea behind making this link is that it's better to die of pertussis as a baby than to live as an autistic person.'
