Latest news with #healthDisparities
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.
Daily Mail
04-07-2025
- Health
- Daily Mail
Revealed: Britain's 'sickest' area where residents become seriously ill by 52
People living in the most deprived parts England will spend up to two decades more in poor health than Britons in the most affluent areas, data suggests. Figures from the Office for National Statistics (ONS) show women born in Barnsley in South Yorkshire only spend—on average—52 years and eight months in good health, the lowest figure in the nation. This is almost two decades less than their counterparts in Wokingham in Berkshire who—on average— 70 years and 10 months of life in healthy condition. For men, those born in Blackpool had lowest healthy life expectancy in the country at 51 years and nine months, almost two decades less than those in Wokingham who enjoy almost 70 years in good health. These figures refer to what experts call 'healthy life expectancy', which is the number of years a person on average spends in 'good health' without developing chronic illnesses linked to age. Examples of such conditions include type 2 diabetes, dementia or arthritis. MailOnline has now created a map allowing you to see the healthy life expectancy in your area. It comes as a new ONS report found that—overall— women in the most deprived areas of England were likely to only have 50.5 years in good health, 20.2 years less—on average—than their more affluent counterparts. When total life expectancy was taken into account this meant a woman born in the poorest areas in England between 2020 and 2022 will only spend 65.1 per cent—about two thirds—of their life in good health, on average. ONS statisticians noted this was the lowest proportion of healthy life recorded in women since reports began in 2013. In contrast, women born in the richest areas in England spent 81.5 per cent of their lifetime in good health. Figures were similar for men, with those born in the poorest neighbourhoods only having 51 years of good health, 19 years less than their those in richer boroughs. This was equivalent to only spending 70.4 per cent of their life in good health, compared to 84.5 per cent for men in richer areas. The ONS found inequality for both sexes had widened over the last decade with poor men and women now living five and seven months longer in poor health than they did a decade ago. Greg Ceely, ONS head of population health monitoring, said the data reflected a broader decline in life expectancy linked to the Covid pandemic. 'The pandemic led to increased mortality, the impact of which is seen in our life expectancy estimates,' he said. 'However, not everyone was impacted equally.' 'The biggest decline in life expectancy was seen in the most deprived areas.' The ONS data paints a similar picture of inequality in Wales. Welsh women in the poorest areas only spent 61.5 per cent of their life in good health, compared to 80.7 per cent in the most affluent areas. For men in Wales, those in poorer areas only spent 70.2 per cent of their life in good health compared to 83.6 per cent in the richest parts. The ONS highlighted that the healthy life expectancies reported are not set in stone. They said changes like advances in medical technology or public health initiatives could lead to increased periods of healthy life in the future. Earlier this year a study suggested rising obesity levels in England were driving declining life expectancy. It calculated our bulging waistlines had contributed to Britons living 9 months less than they did in 2011. Figures released by the ONS earlier his year suggested that a baby boy born in 2023 could expect to live on average to 86.7 years. Girls still have a longer anticipated lifespan of 90 years, although the gap has been narrowing. Among the 2023 cohort, 11.5 per cent of boys and 17.9 per cent of girls are seen as likely to live to see 100. That is set to increase to 17.3 per cent and 24.7 per cent by 2047.
The Guardian
04-07-2025
- Health
- The Guardian
Women in poorest parts of England and Wales ‘will spend only two-thirds of life in good health'
Healthy life expectancy for females in the most deprived areas of England and Wales has fallen to the lowest level since recent records began, with those women now likely to spend only two-thirds of their lives in good health. Women living in wealthier parts of England are likely to enjoy about two more decades of healthy life, the latest Office for National Statistics (ONS) data has shown. Females born between 2020 and 2022 in the most deprived areas of England were likely to spend just 65.1% of their lives in good health, compared with 81.5% in the least deprived areas, the ONS found. The estimate for the most deprived areas is the lowest since the series began in 2013-15, when it stood at 66.3%. 'We have higher rates of ill health than ever before in this country, and that's disproportionately affecting women more than men,' said Emma Frew, a University of Birmingham health economics professor and a research professor at the National Institute for Health and Care Research. 'The impact of the cost of living crisis, the two-child cap on benefits – these disproportionately affect women more than men because it's women that tend to have more responsibility in the household, more responsibility for childcare. 'They contribute more to unpaid care, there are higher rates of mental health problems and high rates of domestic violence, which tends to focus on girls and women.' The inequality gap between men and women has grown, with males born in 2020-22 in the most deprived areas expected to spend 70.4% of their lives in good health, compared with 84.5% for those in the least deprived. The gap between richer and poorer areas has also widened for both genders – for females, it has grown from 19.6 years in 2013-15 to 20.2 years in 2020-22, while for males it has grown from 18.7 to 19.1. In Wales, females born in the most deprived areas in 2020-22 can expect to spend 61.5% of their lives in good health, the lowest since those estimates began in 2013-15. In the least deprived areas the figure stands at 80.7%. 'We're seeing increasing levels of poverty because of things like the cost of living crisis, which has pushed more households into food insecurity states,' Frew said. 'We think of ourselves as being quite a developed country, but there are parts of the country that have economic and health outcomes much more similar to developing countries.' Compared with the pre-coronavirus pandemic period of 2017-19, life expectancy at birth in England in 2020 to 2022 has decreased in the most deprived areas by 1.4 years for males, to 72.6 years, and by 1.1 years for females, to 77.7 years. 'We've got people who still have a similar level of life expectancy, but not healthy life expectancy. I think that's the key metric healthcare service and local authorities are really targeting, because it is not just getting people to live longer, but we need to get people to live healthier and longer,' Frew said. 'There needs to be a really concerted health and equality strategy that looks at those gender differences.'
