New evidence on autism, autoimmune disease and heart attacks shows women diagnosed later than men, for overlapping reasons. Cardiologists, researchers and England’s health service have begun to change the tools and rules behind those delays.
In Sweden, autism diagnoses in boys peak between the ages of 10 and 14. In girls the peak arrives five years later, between 15 and 19. By about age 20 the ratio of males to females with a diagnosis approaches one to one. A national cohort of 2.7 million people, published in The BMJ in February, traced that pattern, as ScienceDaily reported from the paper.
The same lag now appears in three other bodies of evidence from the past three months. Women with autoimmune disease most often waited one to two years for a diagnosis, men under three months. In one US health system, girls and women received an autism diagnosis 3.4 years later than boys and men. Four cardiology societies have rewritten the definition of a heart attack partly to stop women’s being missed. Each points to a different cause, and each comes with a fix already under way.
Heart attack tests with separate limits for women
Troponin is a protein that leaks into the blood when heart muscle is damaged. Doctors use its level to decide whether a heart attack has happened.
Four bodies wrote the new rules together. They are the European Society of Cardiology, the American College of Cardiology, the American Heart Association and the World Heart Federation. Their Fifth Universal Definition of Myocardial Infarction, released on 30 August, sets separate troponin limits for women and men. The societies say this helps “avoid systematic bias that may contribute to under-recognition in females”. Spontaneous coronary artery dissection, a tear in the wall of a heart artery, now sits inside the main heart attack category.
The World Health Organization (WHO) cardiovascular disease fact sheet says women are more likely than men to have shortness of breath, nausea, vomiting and back or jaw pain. The 2021 Lancet Commission on women and cardiovascular disease found heart disease caused 35% of deaths in women. It called the condition “understudied, underrecognized, underdiagnosed, and undertreated” in women, TCTMD reported.
Symptoms put down to the mind
Researchers at the University of Cambridge and the University of East Anglia surveyed 6,607 people with autoimmune diseases for a paper in eClinicalMedicine. Some 43% of women said they had been given a psychiatric explanation for their symptoms, against 33% of men. After adjustment for age, disease, continent and household finances, women were almost 50% more likely to report a psychiatric misdiagnosis. They were nearly 75% more likely to report a psychosomatic one, the University of Cambridge said on 12 October.
Euronews reported that 60.4% of women in the study waited more than a year for a correct diagnosis. The answers are self-reported, and the authors say the reasons for the sex differences still need to be explained. Lead author Dr Melanie Sloan said: “Our findings highlight that psychological or mental health explanations can be given too soon.”
Women make up nearly 80% of people with autoimmune disease in the United States, the NIH Office of Research on Women’s Health said in 2023. Patient partner Wendy Diment said misdiagnoses are “very unlikely to be corrected when a psychosomatic ‘in your head’ type diagnosis is then found to be wrong.”
Professor David D’Cruz is a consultant rheumatologist at Guy’s Hospital and a co-author. “The important message is that when symptoms persist, evolve or involve multiple systems, clinicians must be open minded,” he said. The team wants clinicians to consider autoimmune disease before giving a psychiatric or psychosomatic diagnosis, and to revisit earlier decisions when new symptoms appear.
Screening and research built around males
US health records show the autism gap clearly. A study in JAMA Network Open analysed records for 171,134 patients in one US health system from 2016 to 2024. Girls and women were diagnosed at an average age of 15.7, boys and men at 12.3. New diagnoses in females rose by 19% a year after 2020, which the authors read as better recognition. The data come from billing codes in a single Midwestern system, so they cannot give national rates.
WHO puts the average time to an endometriosis diagnosis at four to 12 years. Its endometriosis fact sheet estimates the condition affects 10% (190 million) of women of reproductive age. A French cohort of about 6,950 participants found average delays of 10 years for endometriosis and 11 for adenomyosis, Contemporary OB/GYN reported.
The US National Institutes of Health began requiring researchers to account for sex in January 2016. Its sex as a biological variable policy responded to concern that heavy use of male animals and cells could hide differences between the sexes.
WHO/Europe found a related gap in death records. Its report in August found women aged 45 and over about 14% more likely than men to have an ill-defined cause of death recorded, Quotidiano Sanità reported. The report also found women more likely to be diagnosed late and to undergo fewer tests, Europa Press reported.
Getting symptoms on record and reviewed
England’s NHS guide to preparing for appointments advises writing down details of your symptoms, including when they started and what makes them better or worse. It suggests noting your two or three most important questions and listing all medicines, including vitamins and supplements. You can ask a friend or family member to come with you, and ask for an interpreter if needed.
The Cambridge team’s recommendations give women something specific to ask for. When symptoms persist, change or affect several parts of the body, it is reasonable to ask whether an earlier diagnosis should be reviewed. That fits what the researchers want clinicians to do as standard.
Heart symptoms need faster action. The NHS heart attack page says to call 999 for chest pain that feels tight or spreads to the arms, neck or jaw, or for severe difficulty breathing. WHO’s list of heart attack symptoms also includes nausea or vomiting, light-headedness and a cold sweat. People in other countries should call their local emergency number.
England ties funding to women’s own feedback
England relaunched its women’s health strategy in April. Health Secretary Wes Streeting said it would tackle “medical misogyny” and end multi-year waits for conditions such as endometriosis. The strategy will link some gynaecology funding to women’s feedback, including on pain management. Its stated aim is for women to be “listened to and taken seriously at the first time of asking”.
This article is for information only and does not replace advice from a qualified health professional.
Header image: Julia Koblitz on Unsplash