The Preventable Designation
Columbia University Mailman School of Public Health and University of Colorado researchers published findings in JAMA Network Open this month: autistic adults on Medicaid have a life expectancy of 64.9 years, compared to 78.7 for the U.S. general population. Fourteen years. The study tracked 2,048,046 Medicaid beneficiaries with autism spectrum disorder over 21 years.
The researchers used one specific word: preventable.
In public health research, "preventable excess mortality" is not a soft term. It's an indictment. It means deaths that could have been avoided through timely access to effective healthcare, adequate treatment of existing conditions, preventive care, continuity of care, and quality of care that takes the patient seriously. It means the system has the knowledge and the tools, and people are dying anyway.
The study found elevated mortality across most categories of diseases and health conditions. Not one catastrophic condition. Everything. Cardiovascular disease, respiratory disease, gastrointestinal issues, metabolic conditions, injuries. Autistic adults on Medicaid are dying earlier from the full range of treatable conditions.
That's a systems failure, not a medical mystery.
The Infrastructure Problem
Medicaid is the largest payer for long-term services and supports for people with disabilities in the United States. It's also chronically underfunded. Provider reimbursement rates are so low that specialists refuse Medicaid patients. Wait times stretch months. Emergency departments become primary care by default.
For a population that needs coordinated, continuous care – autistic adults with higher rates of epilepsy, gastrointestinal conditions, immune dysregulation, mental health conditions – a fragmented system with months-long specialist wait times is not just inadequate. It's lethal.
The 5.6-year gap between autistic Medicaid beneficiaries and the overall Medicaid population suggests autism-specific barriers: providers who don't understand how autism presents in adults, diagnostic overshadowing that attributes every symptom to autism instead of investigating the actual cause, communication barriers when providers misinterpret flat affect or scripted responses as lack of urgency, and sensory environments (fluorescent lighting, loud waiting rooms, unexpected touch) that most medical offices never consider.
The additional 8.2 years to reach the 13.8-year total gap against the general population is the Medicaid infrastructure gap: access, quality, continuity, the things money buys.
The Gender Gap
The study found the life expectancy gap is greater for women than for men. The published summary doesn't quantify it, but the finding stands.
Autistic women are diagnosed later – often misdiagnosed for years with anxiety, depression, borderline personality disorder, eating disorders before anyone considers autism. Late diagnosis means late access to supports, late accommodations, late understanding of needs. It also means years of providers treating symptoms of undiagnosed autism as psychiatric conditions, prescribing medications that don't address the underlying issue, and attributing physical symptoms to mental health.
Delayed diagnosis compounds every other barrier. You can't get autism-informed care if no one knows you're autistic. You can't advocate for sensory accommodations if you don't know that's what you need. You can't push back on diagnostic overshadowing if you're still being told your autism is actually borderline personality disorder.
What the Study Doesn't Answer
The published summary doesn't break down which conditions showed the highest relative risk. It doesn't compare autistic adults on Medicaid to autistic adults with commercial insurance, which would isolate how much of the gap is Medicaid infrastructure versus autism-specific provider bias. It doesn't specify whether the 14-year deficit held constant over the 21-year study period or widened.
Those are the questions that would point to specific interventions. But the overall finding – 14 years, preventable, across most categories of disease – is enough to establish that the current system is failing at scale.
The Accountability Gap
2,048,046 people. Twenty-one years of data. Published in JAMA Network Open, one of the most respected medical journals in the world. The researchers called it preventable.
Who answers for that?
Not Medicaid, which sets reimbursement rates below the cost of providing care and then expresses surprise when specialists won't see beneficiaries. Not medical schools, which train providers to recognize autism in children but not adults. Not healthcare systems, which build exam rooms with fluorescent lighting and expect every patient to tolerate the same sensory environment. Not providers who attribute every symptom to the first diagnosis in the chart.
The study documented the problem. It named the scale. It used the word "preventable." What it didn't do – because research doesn't do this – is assign accountability.
Fourteen years. Across 2 million people. Preventable.
Someone chose this.
