Getting health care

Autistic adults appear to use the emergency department more than other adults. In a 2013 online survey built with autistic researchers, 209 autistic and 228 non-autistic adults reported on their own care, and the autistic group had about twice the odds of an emergency visit in the past year, in a self-selected internet sample.¹ In a safety-net primary-care clinic, patients with a neurodivergent diagnosis, 135 of them autistic, had 1.72 times the rate of emergency visits and 2.04 times the rate of hospital stays of other patients.²

A systematic review of 11 studies from 2014 to 2024 gathered what autistic people and their families report. Communication difficulties, sensory overload, long waits and staff who were not prepared were the most frequent problems, and they came with distress, escalation and lower satisfaction.³ The same review lists what helped: staff trained in autism, calmer surroundings, predictable routines and a caregiver who took part.

Smaller studies point to specific ways care goes wrong. In one Canadian chart review of 1,027 psychiatric emergency visits by 345 autistic adults, autism was written into about 60% of the charts, and less often when borderline personality disorder was also recorded, a pattern the authors call diagnostic overshadowing; restraint use and where people were sent did not differ with a person's sex, with a borderline personality disorder diagnosis, or with whether autism was written in the chart.⁴ In a UK children's hospital, 338 young people aged 8 to 16 came to the emergency department in a suicidal crisis; more than a third were autistic, and 62% of the autistic group were female.⁵ That finding is about children, and it does not show what happens to autistic adults.

Across England, the recorded rate of restrictive interventions involving women in mental health services rose by about 12% a year from 2017 to 2025, with the largest increases in chemical restraint, seclusion and segregation. The figures cover women with mental health conditions, learning disabilities or autism together and do not separate out autistic women.⁶

Imaging staff often have no formal training in autism. In interviews with ten Australian radiographers, none had received any, and they described approaches they had worked out for themselves.⁷ In a survey of 335 radiologic technologists in Saudi Arabia, 13% had had any formal autism training, and their knowledge scored higher than their day-to-day practice.⁸

Whether a scan succeeds depends on the person. In one study of 122 people, 83 of them autistic, most research brain scans succeeded, and success was more likely in older participants and in those with fewer ADHD traits and higher non-verbal reasoning, whether or not they were autistic.⁹ In focus groups and interviews with 18 autistic Latino young adults aged 18 to 25, scanner noise was the main barrier to MRI, and they asked for a mock scanner to practice on and clearer explanations.¹⁰

For procedures, small studies describe what has helped. One hospital built a coping plan for each autistic child into the pre-admission phone call, and the plans were documented for 90% of them; the study tracked the paperwork, not whether the children's care improved.¹¹ A review of dental treatment under general anesthesia in children with special health care needs found it lets them have all their dental work done in a single session, with recovery and follow-up to manage afterwards.¹²

Autistic adults are less likely to have cervical screening. In a 2013 survey of autistic adults, the odds of a recent Pap smear were about half those of non-autistic adults.¹ In a group of autistic females referred to a clinic, only 31 of 82 adults aged 21 or over had ever had one, and language impairment, intellectual disability and leaving education earlier all went with not being screened.³³ In a safety-net clinic, patients with a neurodivergent diagnosis, autistic and otherwise, had lower odds of cervical cancer screening (0.44), though the same study found no difference in colon cancer screening and too few mammograms to analyze.²

In a UK mixed-methods survey of 97 autistic people, two themes came up in interviews as barriers to cervical screening: communication breaking down across the care journey, and the lasting effect of bad past care. In the survey's numbers, pain, sensory issues and knowledge were not linked to whether people went, though people did describe pain and sensory problems in the interviews.¹³

For people with an intellectual disability, a scoping review of 78 studies found cancer screening consistently lower, held back by fear, hard-to-read information and untrained staff, and helped by a trusted person coming along, accessible information and a setting adjusted to the person.¹⁴ Those studies are about intellectual disability rather than autism, though many autistic people also have one.

In England, anyone aged 14 or over on their doctor's learning disability register can have a free annual health check once a year, though practices are not obliged to offer it.³² A diagnosis of autism on its own does not put someone on that register, and as of July 2026 the LeDeR program's reviews still record the check as the GP learning disability annual health check.¹⁵

Autistic adults have more diagnosed eye conditions. In a US cohort matching 1,050 autistic adults with 4,200 others, autistic adults were more than twice as likely to have any eye condition recorded, with higher odds of glaucoma, strabismus, cataract and dry eye in particular.¹⁶ This counts recorded diagnoses, so it reflects how often people are seen as well as how often a condition is present.

In a mixed-methods study of 127 autistic adults and 69 parents, sensory discomfort, communication difficulties and cost were common barriers to eye care; people valued plain language, more time and calmer surroundings, but the authors argue those alone cannot fix access.¹⁷

In an audit of 184 adults with disabilities at a specialist dentistry center, a third had untreated tooth decay, and more than a third were judged to need sedation or general anesthesia to be treated; the audit covers people with disabilities generally, not autistic people alone.¹⁸

Autistic people die at higher rates than other people. A 2022 meta-analysis of 12 studies put the risk at about 2.4 times that of the general population, though the studies varied in how they matched people and the estimates ranged widely.¹⁹ Estimates of how many years of life this costs are wide, and the studies that give them warn they may overstate the gap. In UK primary care records, the apparent gap was about six years for autistic people without an intellectual disability and about seven to fifteen years with one.²⁰ Among US Medicaid beneficiaries, life expectancy was about six years shorter than for other beneficiaries and about fourteen years shorter than for the general US population.²¹ Physical health and lifespan gives the full account.

In its July 2026 national report, the LeDeR program found that among the deaths of people with a learning disability it reviewed in 2024, 39% were from a cause that could have been avoided, nearly double the rate in the general population; 40% involved delays in care or treatment, 41% raised issues with how services were organized, and 26% did not meet the care guidelines for the person's condition.¹⁵ Among autistic people without a learning disability whose deaths were reviewed between 2021 and 2024, 54% had a diagnosis of depression and 50% of anxiety, and the report says that when services and care were not tailored to autistic adults, many disengaged from services.¹⁵ In the same data for 2021 to 2023, 39.5% of deaths of adults with severe or profound intellectual disability were avoidable; those figures are about intellectual disability.²²

A commentary argues that diagnostic overshadowing, fragmented care pathways and treatments that are not adapted drive poorer outcomes for people who are both autistic and have psychosis.²³

Autistic adults describe being disbelieved and not taken seriously by clinicians, particularly in mental health care. In interviews with 13 autistic adults in England, not being believed was a recurring theme, and the professionals' own understanding of autism was often the deciding factor.²⁴ Interviews with autistic young adults in Finland described being misunderstood, minimized and spoken over, in what the authors call epistemic injustice.²⁵ A scoping review of 15 studies of adults with learning disabilities and autistic adults in England found the barriers stacked up at every level, from the person and the relationship to how services and policy were organized, and named flexible booking, positive professional attitudes and a trusting relationship as what helped.²⁶

Some barriers are built into how services are run and how people reach them. In a survey of 504 adults about mental health care, 173 of them autistic and 158 self-identifying, systemic barriers such as cost and navigating services were the most common and most severe; barriers tied to providers' knowledge, attitudes and skills were especially severe for the autistic groups.²⁷ In the 2013 survey, autistic adults reported lower satisfaction with communication with their doctors and more unmet health needs.¹

Autism health passports, which record a person's needs for staff, are recommended in UK guidance, but a realist review of 13 studies found that only one item was high quality and that there was not enough evidence they reduce inequalities in care.²⁸ As of October 2026, no study found shows that a health passport reduces these inequalities.

Training staff is the most studied fix, and the evidence is weak. A systematic review of 34 studies found that every one reported a gain in professionals' knowledge, skills, attitudes or confidence, but 30 of the 34 were single-group studies before and after training, only 9 used a validated measure, only 8 involved people with lived experience in designing the training, and the review found little evidence for programs aimed at adults.²⁹

Other accommodations are studied less. A scoping review of 58 studies of 10 communication accommodations in health care, such as individual care plans and communication aids, found mostly positive results, but most studies were descriptive and small, and most were about adults with other communication disabilities such as aphasia, not autistic people.³⁰ The emergency-department review named staff training, calmer surroundings, predictable routines and caregiver involvement as what helped.³ For eye care, people valued plain language, more time and calmer settings, though the authors argue for changes to the system rather than one-off adjustments.¹⁷

A health check built with autistic people, delivered in a trial in northern England, used a questionnaire sent before the appointment and a longer appointment with a trained clinician; autistic people, carers and clinicians all reported it as acceptable and worthwhile.³¹

Autistic writers describe health care as a system problem. Luke Beardon writes that "the fault is absolutely not to be laid at your feet" and that it "isn't being autistic that precludes you from access, it is the systems themselves", and lists what services could change, from recording communication preferences up front to quiet first-of-day appointments and a sensory questionnaire.^c1 Pete Wharmby describes the consultation itself: "I find this so stressful that I rush it, and find myself back in the open air having failed to ask three of the four questions that I'd carefully prepared."^c2

Being disbelieved is a common thread. Beardon writes: "Engage with almost any autistic person and they will confirm that they are frequently questioned and not believed." He adds that reasonable adjustments "are a human right", and passes on Mariam's account of a hospital stay, where the lights, the plastic wrap on food and other patients left her unable to eat.^c3 In Eric Garcia's book, Lydia Wayman, who lives with chronic health conditions, says, "I just didn't know that you had to play social games with doctors", and describes an emergency department that, after one doctor intervened, came to "accommodate me but treat me like I am capable".^c4

Writers also offer practical steps. Megan Anna Neff advises finding practitioners "experienced in caring for Autistic people" and writing down your concerns before an appointment.^c5 Carly Jones, a safeguarding specialist, reports an NHS cancer nurse saying her autistic patients "often come in at stage 3 or 4, not at stage 1 or 2", and that autistic people are offered annual health checks only if they also have a learning disability.^c6 Self-advocacy covers preparing for an appointment and asking for adjustments.