Latest news with #AutismSpeaks
Forbes
14-07-2025
- Health
- Forbes
Debunking The '54-Year Life Expectancy' Claim For Autistic People
Autistic people deserve better than a headline. Yet a widely circulated claim that autistic ... More individuals have an average life expectancy of just 54 years continues to echo across media outlets, high-impact journals, and even federal policy reports. Autistic people deserve better than a headline. Yet a widely circulated claim that autistic individuals have an average life expectancy of just 54 years continues to echo across media outlets, high-impact journals, and even federal policy reports. The source? A 2016 study by Hirvikoski et al. has been grossly misinterpreted and misapplied in both academic and public discourse. The reality is far more nuanced, and perpetuating this statistic is not only misleading but also harmful. According to Andy Shih, Chief Science Officer at Autism Speaks, "Data from credible previous studies suggests a shorter average life expectancy for autistic adults when compared to their peers of about 17 years. However, taking the limitations of those studies into account, we cannot say that this finding is generalizable across the world." What the Original Study Actually Said About Autistic People The Hirvikoski study did not find that all autistic people die at 54. In fact, fewer than 3% of the autistic cohort died during the study period, which renders it methodologically incorrect to extrapolate a mean age of death from such a small subset. "In the 2016 study by Hirvikoski, the authors extrapolated a mean age of death from a small subset," said Kimberly Idoko, MD, Esq., a board-certified neurologist and certified coach. "That's statistically inappropriate, and it creates a distorted picture that doesn't reflect the true life expectancy of autistic people." Gemma Williams, an academic researcher in the UK, echoed this sentiment. "Only around 3% of the autistic cohort died during the study, but only 0.91% of the non-autistic cohort died. We're still unclear on the percentage of autistic people in the wider population, but what's clear is that autistic people were more likely to have died from almost all types of medical conditions." Recent studies, such as this 2023 Lancet Regional Health study, provide a more accurate representation of the disparity, showing a life expectancy gap between autistic and non-autistic adults that is significant but not as extreme as the 54-year claim. The Real Consequences of Autistic Misrepresentation In a recent open-access study published in JAMA Network Open, researchers Lauren Bishop and Brittany ... More N. Hand analyzed the citations of the Hirvikoski study. Over 70% of citing authors misrepresented their findings. In a recent open-access study published in JAMA Network Open, researchers Dr. Lauren Bishop and Dr. Brittany N. Hand analyzed the citations of the Hirvikoski study. Over 70% of citing authors misrepresented their findings. "We expected to find that a sizable minority of articles misrepresented Hirvikoski et al's findings based on our anecdotal experiences as readers, reviewers, and editors," said Dr. Hand. "However, we were surprised to see how widespread these misrepresentations really were." This misinformation has not been contained within academia. "These misrepresentations have been perpetuated in really high-impact publications and news media," Hand explained. "They even appeared in reports to the U.S. Congress by the Department of Health and Human Services and a continuing education article from the CDC." The implications are vast. "Misrepresenting mortality statistics for autistic people can cause psychological distress for autistic individuals and their families," Hand added. "Our autistic adult advisory board frequently raises concerns about this narrative." This misinformation can also lead to insurance denials, distorted retirement planning, and worsened stigma. In her social work course, Dr. Bishop teaches this exact topic and notes that "most of my bachelor's- and master' s-level social work students make the very same interpretation mistakes that the citing authors in our study make." This isn't just about numbers; it's about how we shape perceptions and policies. Overshadowing Urgent Health Priorities This misplaced focus on a singular, misleading statistic diverts attention from the actual causes of health disparities. "Perhaps in part because of the misrepresentation of Hirvikoski et al.'s suicide findings," Bishop noted, "autism researchers have increasingly focused on suicide and suicidality instead of studying more prevalent causes of mortality, such as cardiovascular disease." Ms. Williams points out that in the UK, autistic individuals face significant healthcare barriers, including sensory challenges and communication issues that often prevent them from accessing timely care. "Many autistic people don't get past primary care with problems that quickly escalate," she said. "Add to that background stigma and reduced opportunities to participate in school, work, and social lives, and it paints a bleak picture." Shih agrees that more inclusive, long-term studies are needed. "Conducting studies like that led by Hirvikoski across every country would give us a more generalizable understanding of autism and aging," he said. "This would point to solutions and opportunities for improvement in these communities." A More Responsible Narrative For Autistic People So, how can we improve? First, by recognizing the responsibilities of researchers, reviewers, and editors. "Authors have a responsibility not to oversensationalize the titles of their research articles to the point of inaccuracy," said Dr. Hand. "Reviewers and editors must check for this." The term "premature mortality," used in the title of the Hirvikoski paper, is especially problematic. "There is not sufficient evidence from Hirvikoski et al., 2016 to support the idea that, at a population level, autistic people die prematurely," said Hand. Even researchers like Bishop and Hand have begun re-evaluating their own language use. "Now that we know better, we want to do better and start a conversation about it," Hand said. Dr. Bishop encourages a shift in focus: "Lots of autistic people age well and live long, healthy lives. Health and aging outcomes among autistic people are incredibly heterogeneous. We can do a lot at the individual, family, community, and systems levels to support folks to age and live well." Partnering with autistic people in the research process is also essential. "We need more information about autistic people's goals and priorities around aging," Hand emphasized. Bishop added that it's time to stop framing aging in autism as solely a problem. "Let's move toward studying healthy aging," she said. What Comes Next Shih emphasized that this is a global challenge: "Long-term, longitudinal studies are especially ... More critical to track autistic individuals across their lifespans. These must be fully inclusive, reflecting the full diversity of the autistic community." Studies of aging in autism are still in their infancy. "Many autism researchers refer to 'aging' autistic populations as those aging into adulthood or middle age," Hand said. "The narrative needs to expand to include aging into and through older adulthood." Bishop identified several critical, under-discussed issues: "Diagnosis in older adulthood, dementia, cardiovascular disease, reproductive health, and accommodating autistic older adults within the healthcare system all need more attention." Shih emphasized that this is a global challenge: "Long-term, longitudinal studies are especially critical to track autistic individuals across their lifespans. These must be fully inclusive, reflecting the full diversity of the autistic community." The myth of the 54-year life expectancy for autistic people has persisted long enough. "It's more important to reckon with reality than let small numbers in one study steer public thinking," said Williams. Responsible communication isn't just good science, it's good humanity.
Black America Web
23-06-2025
- Entertainment
- Black America Web
Chrisette Michele's Autism Diagnosis Arrives To Social Media Criticism
Source: Paras Griffin / Getty Singer Chrisette Michele is known for her sultry vocals and gorgeous ballads like 'A Couple of Forevers.' She is also known as the woman whose career was derailed by performing at Donald Trump's first inauguration. But now she's revealing a diagnosis that has helped her better understand some of the things she's been through in her life and career. Michele, 42, says she was recently told she is on the autism spectrum. 'I just learned I'm autistic. Official diagnosis. They used the word 'severely,'' Michele posted. 'I've been quiet on here. But… I've been outside. Singing. … but learning to strip the mask. One show at a time. (The irony) Just… coming to grips with a lot and giving myself room to take it all in.' She added, 'My life and its challenges finally make sense. So so much sense. Autistic. Would you get a load of that… I'll talk more soon. Just wanted to say hi… from stage side.' As defined by the autism advocacy organization Autism Speaks, 'Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. According to the Centers for Disease Control, autism affects an estimated 1 in 31 children and 1 in 45 adults in the United States today.' Michele has had her share of challenges, including a miscarriage, which she shared publicly on social media. But the backlash she received for performing for Trump's first inauguration in 2017, hurt her reputation and possibly her career. Though she has performed regularly in recent years and is currently on tour, Michele said she was hurt by the criticism for what she saw as a way to build a bridge to both sides. Instead, she received death threats. 'We had security guards at my hotel doors,' Michele said in an interview with The Guardian earlier this year. 'I wasn't going to the grocery store by myself for years.' In 2017, she said the resultant stress was what caused her to lose a baby and helped end her marriage. 'That was me at my most panicked, the point where I came close to doing anything to get people just to be nice to me for one second,' she said. 'I thought people were never going to stop hating me. I didn't think this would go on for years .' And the criticism didn't end with her latest post. Many commenters took issue with her 'severe' autism diagnosis, giving the wide range of the autism spectrum. While it may indeed be severe on Michele's end as it relates to an adult diagnosis, or autism's symptoms, which are having difficulty processing information, connecting to others, or reading social cues, many parents of autistic children questioned the doctor's characterization. One commenter said, 'I would like to know who made this diagnosis because it BS, as a mother to a non verbal child on the spectrum, I can say with my whole chest you do NOT have SEVERE Autism. I'm tired of people acting like this is a tik tok trend and spreading misinformation for clout or sympathy.' Another commenter tried to provide some nuance to the criticism, saying 'My 12 year old is nonverbal, has childhood apraxia and is level 3 autistic, which is considered severely/profound autistic. This is so insulting to me and other parents that are actually dealing with severely autistic children on a daily basis. You ARE NOT severely autistic, FULL STOP. People are making a mockery of autism and it's extremely, disgusting, disrespectful and hurtful. I'm not saying that you're not on the spectrum…I'm saying you are not severely autistic. Anyone have any questions? Please visit @life_with_severe_autism and watch her video for a complete understanding.' Though drawing criticism once again, Michele has potentially opened up a conversation about adult autism and how it can show up. As she said, there is more conversation to come. In the meantime, you can see Michele on tour in selected cities through Aug. 15. See social media's reaction to her diagnosis beow. Chrisette Michele's Autism Diagnosis Arrives To Social Media Criticism was originally published on Black America Web Featured Video CLOSE
Yahoo
02-06-2025
- General
- Yahoo
Kennedy's autism crusade ignores history, including his own family's
In the telling of President Trump and his Health and Human Services secretary, Robert F. Kennedy Jr., autism in the U.S. has exploded in the past decades with seemingly no explanation. These claims skip over a mountain of data and touch on the country's dark history around treating people with neurological and developmental differences, including within Kennedy's own illustrious family. 'We are indeed diagnosing autism more than ever before in history. I mean, that's just a fact,' Andy Shih, chief science officer at the nonprofit Autism Speaks, told The Hill. While Kennedy insists external factors like vaccines must be to blame, experts instead believe the trend is a reflection of an improved understanding of neurodivergence within the medical community. 'We think that the increases are due to the fact that there's greater awareness that there are tools now that allow us to screen systematically with children at certain ages, certain stages of development,' Shih said. Autism, like many diagnoses, does not exist in a vacuum. Its perception and detection have changed drastically within the last century, with much of that change occurring throughout Kennedy's lifetime. The exact cause of autism is unknown, but the current scientific consensus is that it's a complex amalgamation of genetic predispositions and environmental factors. 'We used to compare autism to what we call complex disorders or complex diseases like heart disease and lung disease, where there's certainly a genetic predisposition, but environment influences certainly affect outcome,' Shih said. 'Now we look at autism not as a medical condition, but part of the richness of human variation.' Kennedy vowed to find the cause of autism by September of this year, suggesting that 'environmental toxins' in food and medicine are the likely culprits. Since autism was first diagnosed, numerous causes have been suggested, several of which have been discredited. In the mid-20th century, Austrian American psychologist Bruno Bettelheim proposed that emotionally distant parenting by so-called refrigerator mothers was the cause of autism, and he called for removing diagnosed children from their parents. Kennedy has long put his support behind the theory that vaccines could cause autism, but analyses, including those conducted by the Centers for Disease Control and Prevention (CDC), have found no link between immunizations and autism spectrum disorder. Kennedy's stated goal for finding the cause of autism is to prevent it from occurring. During an April press conference, he said children with autism will go on to be burdens on their families and society. '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,' Kennedy said. 'Autism destroys families,' he added. As to whether autism can be prevented, it's unclear. And some experts question the necessity, and ethics, of such an endeavor. 'Is it environmental exposure? Is it maternal or paternal age? We don't know the answers to that,' said Nicole Clark, CEO and co-founder of the Adult and Pediatric Institute. 'We absolutely should be funding scientific research to try to get to the bottom of that. But the comments that he makes of 'we should prevent autism.' Those comments get very close to eugenics.' Clark is also the mother of children with autism. 'Those comments start to weed into anyone that is different should be prevented,' she added. According to the CDC, 1 in 31 children and 1 in 45 adults in the U.S. have autism. This is a stark difference from just a few decades ago, when roughly 1 in 150 children were diagnosed with autism spectrum disorder. But autism as a diagnosis is a historically recent development. The first person considered to be diagnosed with autism, an American banker named Donald Triplett, died in 2023 at the age of 89. He was diagnosed in 1943, 11 years before Kennedy was born. Autism was first added to the Diagnostic and Statistical Manual of Mental Disorders (DSM) as a psychiatric disorder connected to schizophrenia in 1968. It wasn't until 1980 that the DSM was updated to reflect autism as a developmental diagnosis separate from schizophrenia. The standards and criteria for diagnosing autism have also broadened over the years. But increased diagnoses don't necessarily mean increased occurrence. 'We can see a couple things that indicate that what's going on is that our ability to recognize and diagnose autism is improving, rather than that the actual rate of autism occurring in the population is going up,' said Zoe Gross, director of advocacy at Autistic Self Advocacy Network. Diagnosis substitution is a phenomenon in which the labeling of one condition is replaced by another over time as knowledge and understanding change. Applying our current day understanding of autism spectrum disorder reveals broad areas for potential diagnosis substitution. 'We see that as we learn more about autism, people who clearly show the traits of autism but would in the past have been given just a diagnosis of intellectual disability, now have an autism diagnosis,' Gross explains. Another factor contributing to increased diagnoses is that many people with autism spectrum disorder may appear to have no intellectual disability. 'Rates of autism without intellectual disability, that is increasing faster than diagnoses of autism with intellectual disability, which shows that if that group that would have been missed in the past that is making up the larger portion of the increase in diagnoses,' said Gross. A report from 2023 that reviewed information from 2000 to 2016 found that 26.7 percent of children with autism spectrum disorder had profound autism. But there is nuance within that group, too. 'When they did that study, they defined profound autism as having a measured IQ below 50, or being nonspeaking, or being mostly nonspeaking. So, any of those three things, or any combination of those three things, you would get put in that category,' said Gross. Despite being lumped together, many people with autism spectrum disorder who are nonverbal or mostly nonverbal are capable of productive activities, which Gross notes can include writing poetry. Gross noted that when Kennedy was growing up, 'the diagnosis of autism wasn't even in the DSM.' According to Gross, to be diagnosed with autism in the '40s and '50s, when Kennedy was growing up, was 'very rare,' as only a few clinicians would have been able to identify it. Kennedy has claimed that he's never seen someone of his generation with 'full-blown autism,' which could be partly explained by how many of these individuals were hidden away from wider society. Up until the mid-20th century, a large proportion of children perceived to be mentally or neurologically disabled were put in institutions where they were often subjected to extreme neglect. Institutionalization reached its peak in the '50s and '60s. 'If you look at statistics about the disabilities and needs of people who are in institutions around the time when they started to close in the '60s and '70s, you'll see that many of those people had exactly those kinds of disabilities and needs that Secretary Kennedy describes,' said Gross. 'Families would be told … 'You should forget all about them, try to have another child and move on with your life,'' Gross added. 'So, a very kind of coldhearted approach to society's responsibility to care for people with intellectual and developmental disabilities.' Beginning in the '60s, parents began moving away from institutionalization, choosing instead to keep their children at home. The Kennedys were early adopters of this choice, at least in the beginning. Rosemary Kennedy, born in 1918, was the eldest daughter of Joseph and Rose Kennedy and aunt to the current Health secretary. Developmental delays were observed early on in Rosemary's life; she was slower to walk and speak than her brothers and had difficulty concentrating. She is also remembered as having had a bright personality in her youth. It's unclear if Rosemary had autism or another developmental disorder. But with these traits, the Kennedys would have been advised to institutionalize Rosemary. 'But Rose Kennedy, their mother and that would be Bobby Kennedy Jr.'s grandmother, didn't believe in that, and she thought the best place for Rosemary was at home,' historian Kate Clifford Larson, author of the book 'Rosemary: The Hidden Kennedy Daughter,' told The Hill. 'So, they diverged from what was going on in general in the public at the time.' Joe Kennedy, who Larson describes as 'nervous and afraid,' consented to having Rosemary lobotomized in her early 20s, rendering her incapacitated and institutionalized for the rest of her life. She died in 2005. According to Larson, this choice to raise Rosemary along with her other siblings, and her subsequent disappearance from their lives, had a profound impact on the entire family, including RFK Jr.'s father, the senior Robert F. Kennedy. 'He was 14, 13 when she was lobotomized, so he was cognizant, whereas Ted was a little bit younger. So, they were all affected, and they missed her, because it was a very, very tight family,' said Larson. 'Bobby missed her, too, and like his brother, Jack, once they got power in the government, they started making changes.' Rosemary's sister Eunice Kennedy Shriver went on to found the Special Olympics, the largest sports organization for children and adults with intellectual disabilities. Eunice's son, Anthony Shriver, founded the group Best Buddies International, which connects people with intellectual and developmental disabilities with friends and mentors. 'Bobby Jr., he was part of that. He saw his family do all these things all those years,' said Larson. 'He visited those horrific institutions as a teenager and young man. He saw how horrible they were. And so, for him today to say that those things didn't exist, that autism and these other illnesses did not exist before vaccines, is crazy.' Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
The Hill
02-06-2025
- Health
- The Hill
Kennedy's autism crusade ignores history, including his own family's
In the telling of President Trump and his Health and Human Services secretary, Robert F. Kennedy Jr., autism in the U.S. has exploded in the past decades with seemingly no explanation. These claims skip over a mountain of data and touch on the country's dark history around treating people with neurological and developmental differences, including within Kennedy's own illustrious family. 'We are indeed diagnosing autism more than ever before in history. I mean, that's just a fact,' Andy Shih, chief science officer at the nonprofit Autism Speaks, told The Hill. While Kennedy insists external factors like vaccines must be to blame, experts instead believe the trend is a reflection of an improved understanding of neurodivergence within the medical community. 'We think that the increases are due to the fact that there's greater awareness that there are tools now that allow us to screen systematically with children at certain ages, certain stages of development,' Shih said. Autism, like many diagnoses, does not exist in a vacuum. Its perception and detection have changed drastically within the last century, with much of that change occurring throughout Kennedy's lifetime. The exact cause of autism is unknown, but the current scientific consensus is that it's a complex amalgamation of genetic predispositions and environmental factors. 'We used to compare autism to what we call complex disorders or complex diseases like heart disease and lung disease, where there's certainly a genetic predisposition, but environment influences certainly affect outcome,' Shih said. 'Now we look at autism not as a medical condition, but part of the richness of human variation.' Kennedy vowed to find the cause of autism by September of this year, suggesting that 'environmental toxins' in food and medicine are the likely culprits. Since autism was first diagnosed, numerous causes have been suggested, several of which have been discredited. In the mid-20th century, Austrian American psychologist Bruno Bettelheim proposed that emotionally distant parenting by so-called refrigerator mothers was the cause of autism, and he called for removing diagnosed children from their parents. Kennedy has long put his support behind the theory that vaccines could cause autism, but analyses, including those conducted by the Centers for Disease Control and Prevention (CDC), have found no link between immunizations and autism spectrum disorder. Kennedy's stated goal for finding the cause of autism is to prevent it from occurring. During an April press conference, he said children with autism will go on to be burdens on their families and society. '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,' Kennedy said. 'Autism destroys families,' he added. As to whether autism can be prevented, it's unclear. And some experts question the necessity, and ethics, of such an endeavor. 'Is it environmental exposure? Is it maternal or paternal age? We don't know the answers to that,' said Nicole Clark, CEO and co-founder of the Adult and Pediatric Institute. 'We absolutely should be funding scientific research to try to get to the bottom of that. But the comments that he makes of 'we should prevent autism.' Those comments get very close to eugenics.' Clark is also the mother of children with autism. 'Those comments start to weed into anyone that is different should be prevented,' she added. According to the CDC, 1 in 31 children and 1 in 45 adults in the U.S. have autism. This is a stark difference from just a few decades ago, when roughly 1 in 150 children were diagnosed with autism spectrum disorder. But autism as a diagnosis is a historically recent development. The first person considered to be diagnosed with autism, an American banker named Donald Triplett, died in 2023 at the age of 89. He was diagnosed in 1943, 11 years before Kennedy was born. Autism was first added to the Diagnostic and Statistical Manual of Mental Disorders (DSM) as a psychiatric disorder connected to schizophrenia in 1968. It wasn't until 1980 that the DSM was updated to reflect autism as a developmental diagnosis separate from schizophrenia. The standards and criteria for diagnosing autism have also broadened over the years. But increased diagnoses don't necessarily mean increased occurrence. 'We can see a couple things that indicate that what's going on is that our ability to recognize and diagnose autism is improving, rather than that the actual rate of autism occurring in the population is going up,' said Zoe Gross, director of advocacy at Autistic Self Advocacy Network. Diagnosis substitution is a phenomenon in which the labeling of one condition is replaced by another over time as knowledge and understanding change. Applying our current day understanding of autism spectrum disorder reveals broad areas for potential diagnosis substitution. 'We see that as we learn more about autism, people who clearly show the traits of autism but would in the past have been given just a diagnosis of intellectual disability, now have an autism diagnosis,' Gross explains. Another factor contributing to increased diagnoses is that many people with autism spectrum disorder may appear to have no intellectual disability. 'Rates of autism without intellectual disability, that is increasing faster than diagnoses of autism with intellectual disability, which shows that if that group that would have been missed in the past that is making up the larger portion of the increase in diagnoses,' said Gross. A report from 2023 that reviewed information from 2000 to 2016 found that 26.7 percent of children with autism spectrum disorder had profound autism. But there is nuance within that group, too. 'When they did that study, they defined profound autism as having a measured IQ below 50, or being nonspeaking, or being mostly nonspeaking. So, any of those three things, or any combination of those three things, you would get put in that category,' said Gross. Despite being lumped together, many people with autism spectrum disorder who are nonverbal or mostly nonverbal are capable of productive activities, which Gross notes can include writing poetry. Gross noted that when Kennedy was growing up, 'the diagnosis of autism wasn't even in the DSM.' According to Gross, to be diagnosed with autism in the '40s and '50s, when Kennedy was growing up, was 'very rare,' as only a few clinicians would have been able to identify it. Kennedy has claimed that he's never seen someone of his generation with 'full-blown autism,' which could be partly explained by how many of these individuals were hidden away from wider society. Up until the mid-20th century, a large proportion of children perceived to be mentally or neurologically disabled were put in institutions where they were often subjected to extreme neglect. Institutionalization reached its peak in the '50s and '60s. 'If you look at statistics about the disabilities and needs of people who are in institutions around the time when they started to close in the '60s and '70s, you'll see that many of those people had exactly those kinds of disabilities and needs that Secretary Kennedy describes,' said Gross. 'Families would be told … 'You should forget all about them, try to have another child and move on with your life,'' Gross added. 'So, a very kind of coldhearted approach to society's responsibility to care for people with intellectual and developmental disabilities.' Beginning in the '60s, parents began moving away from institutionalization, choosing instead to keep their children at home. The Kennedys were early adopters of this choice, at least in the beginning. Rosemary Kennedy, born in 1918, was the eldest daughter of Joseph and Rose Kennedy and aunt to the current Health secretary. Developmental delays were observed early on in Rosemary's life; she was slower to walk and speak than her brothers and had difficulty concentrating. She is also remembered as having had a bright personality in her youth. It's unclear if Rosemary had autism or another developmental disorder. But with these traits, the Kennedys would have been advised to institutionalize Rosemary. 'But Rose Kennedy, their mother and that would be Bobby Kennedy Jr.'s grandmother, didn't believe in that, and she thought the best place for Rosemary was at home,' historian Kate Clifford Larson, author of the book 'Rosemary: The Hidden Kennedy Daughter,' told The Hill. 'So, they diverged from what was going on in general in the public at the time.' Joe Kennedy, who Larson describes as 'nervous and afraid,' consented to having Rosemary lobotomized in her early 20s, rendering her incapacitated and institutionalized for the rest of her life. She died in 2005. According to Larson, this choice to raise Rosemary along with her other siblings, and her subsequent disappearance from their lives, had a profound impact on the entire family, including RFK Jr.'s father, the senior Robert F. Kennedy. 'He was 14, 13 when she was lobotomized, so he was cognizant, whereas Ted was a little bit younger. So, they were all affected, and they missed her, because it was a very, very tight family,' said Larson. 'Bobby missed her, too, and like his brother, Jack, once they got power in the government, they started making changes.' Rosemary's sister Eunice Kennedy Shriver went on to found the Special Olympics, the largest sports organization for children and adults with intellectual disabilities. Eunice's son, Anthony Shriver, founded the group Best Buddies International, which connects people with intellectual and developmental disabilities with friends and mentors. 'Bobby Jr., he was part of that. He saw his family do all these things all those years,' said Larson. 'He visited those horrific institutions as a teenager and young man. He saw how horrible they were. And so, for him today to say that those things didn't exist, that autism and these other illnesses did not exist before vaccines, is crazy.'
Axios
14-05-2025
- Health
- Axios
Illinois restricts feds' access to autism data
Gov. JB Pritzker signed an executive order last week prohibiting state agencies from sharing autism-related data outside the state without consent from an individual or guardian. Why it matters: The order is in response to Health and Human Services Secretary Robert F. Kennedy Jr.'s push for an autism registry, which he says has the goal of finding the causes and possible interventions for people with autism spectrum disorder (ASD). 1 in 31 children and 1 in 45 adults in the U.S. have autism, according to Autism Speaks. Illinois is one of the first states to officially restrict the federal government from accessing state data on autism. The latest: The National Institutes of Health (NIH) and the Centers for Medicare and Medicaid Services (CMS) announced last week they will build a platform to collect data from claims and electronic medical records to conduct research on the causes of ASD. Both agencies stress that data will be shared "in a manner consistent with applicable privacy laws to protect Americans' sensitive health information." Axios asked HHS for specifics of how it plans to protect the data but did not immediately receive a response. Reality check: More than a dozen autism advocacy organizations have pushed back on Kennedy's rhetoric that autism is "curable" and his past comments that vaccines cause autism. "Claims that autism is 'preventable' are not supported by scientific consensus and perpetuate stigma. Language framing autism as a 'chronic disease,' a 'childhood disease' or 'epidemic' distorts public understanding and undermines respect for autistic people," a statement reads. Between the lines: The executive order recognizes that federal law requires some data to be shared for specific, authorized purposes, like Medicaid and Medicare claims, according to state officials.
