Debunking The '54-Year Life Expectancy' Claim For Autistic People

Forbes

2 days ago

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.