Harder to Reach, Harder to Be Heard: Healthcare Barriers for Autistic Adults

Autistic adults find it much harder than non-autistic adults to get and use ordinary healthcare. Studies covering the UK, Ireland, the United States, Canada and Australia all show the same pattern: the phone line, the waiting room and the consultation itself put barriers in the way. The result is more unmet health needs, less preventive care and conditions left untreated until they become serious.

For most people, seeing a doctor is a chore. For many autistic adults it is a chain of obstacles, and any one of them can end the attempt. First comes a crowded morning phone queue, then a receptionist asking about symptoms at the front desk, then a bright, noisy waiting room with no idea how long the wait will be. Finally there is a short consultation that depends on describing pain quickly, in words, to a stranger who may read a flat voice or an unexpected manner as a sign that nothing is wrong. None of this means autistic people care less about their health. It means services were built around one way of communicating and coping, and the evidence below shows what that costs.

The barriers start before the appointment: phones, booking and waiting rooms

A 2022 study in BMJ Open surveyed 507 autistic and 157 non-autistic adults online, most of them living in the UK or Ireland^[1]. It was designed after consulting autistic people at an autistic conference; respondents were self-selected, recruited through social media and the Irish charity AsIAm. Eight in ten autistic respondents said they had difficulty visiting a GP when they needed to, compared with 37% of non-autistic respondents. The telephone stood out: difficulty using the phone to book was a reason to avoid or delay a visit for 62% of autistic adults, against 16% of non-autistic adults. Autistic respondents in the UK found phone booking harder than autistic respondents elsewhere (66% vs 54%), and found it harder to see a doctor they knew or preferred (58% vs 29%).

The waiting room is a barrier of its own. The specific problems autistic respondents named most often were noise from other patients (63%), crowded waiting areas (59%) and bright or fluorescent lights (53%)^[1]. A separate online survey of 1,285 autistic and 1,364 non-autistic adults, by Weir, Allison and Baron-Cohen, found similar results. Of the autistic adults, 70% found the waiting room's sensory environment more overwhelming than other places, compared with 31% of non-autistic adults. And 84% said setting up an appointment made them anxious, against 54%^[2].

The strongest population-level check comes from England. Researchers analysed the 2022 GP Patient Survey, which is sent to a random sample of adults registered with NHS GP practices. Of 623,157 respondents, 4,481 said they were autistic^[3]. After adjusting for age, gender, ethnicity and deprivation, autistic adults were less likely to report a good experience of making an appointment (50.8% vs 56.5%; adjusted odds ratio 0.90) or to find their practice's website easy to use (60.2% vs 67.3%; adjusted odds ratio 0.78). These gaps are smaller than in the volunteer surveys, which asked different questions and may attract people who have had more difficulty, but they point the same way.

In the consulting room, communication breaks down in both directions

Getting through the door is only the start. In the Weir survey, 67% of autistic adults said they could usually explain their symptoms, compared with 91% of non-autistic adults. Only 51% could describe how bad their pain felt, against 84%, and only 41% usually had enough time to discuss their concerns, against 70%^[2]. For clinicians, that is a warning. The usual signals, such as a quick symptom summary, a pain score or a visible show of distress, may be missing even when something is badly wrong.

Other studies find the same pattern. An online survey by a US research team, designed with autistic adults as research partners, compared 209 autistic adults with 228 non-autistic adults. Autistic participants most often named fear or anxiety (35%), and not being able to process information fast enough to take part in real-time discussion of their care (32%). Next came worry about cost (30%), facilities causing sensory problems (30%) and difficulty communicating with providers (29%)^[4]. In the Doherty survey, 56% of autistic respondents needed extra time to process what was being said, compared with 8% of non-autistic respondents. Only 3% said they did not feel anxious about going to the doctor, against 33%^[1].

Systematic reviews agree. A 2019 review found only six eligible studies on autistic adults' access to physical healthcare. It named patient–provider communication, sensory sensitivities, and difficulties with planning and organisation as the key barriers^[5]. A 2020 review of 31 articles by researchers in Ireland concluded that barriers occur "at the patient, provider, and system levels"^[6].

Many autistic adults are not believed, or expect not to be

Being disbelieved comes up again and again. In the Doherty survey, 67% of autistic respondents worried they would not be taken seriously when they described their symptoms, and 65% worried about being seen as a hypochondriac. Not feeling understood was a reason to avoid or delay a visit for 56%, against 13% of non-autistic respondents^[1]. In Australia, a survey of 263 autistic and 70 non-autistic adults aged 25 and over, drawn from the Autism CRC-funded Australian Longitudinal Study of Autism in Adulthood, heard similar concerns. Of the autistic participants, 30% said providers or staff misread their behaviour (1% of non-autistic participants) and 27% said providers or staff did not take what they said seriously (3%)^[7].

Knowledge is part of the problem. Only 62% of autistic respondents in the Doherty survey said their doctor knew they were autistic^[1]. In two UK surveys of autistic adults (407 and 537 respondents), the adjustment rated most important was access to a clinician who understands autism: 96.5% rated it important for physical healthcare and 98.3% for mental healthcare^[8]. Our companion article asks whether health professionals know enough about autism.

Even in England's random-sample survey, fewer autistic adults said they had confidence and trust in the professional they saw (87.6% vs 93.3%; adjusted odds ratio 0.67). Fewer said their needs were met (84.7% vs 91.2%; adjusted odds ratio 0.73)^[3]. In the Weir survey, 62% of autistic adults said they often left appointments feeling they had received no help at all, about twice the non-autistic figure of 33%^[2].

The result: unmet needs, missed screening and later treatment

An earlier paper from the same US research team, based on an online survey of 209 autistic and 228 non-autistic adults, looked at outcomes. After adjusting for demographics, health insurance and overall health, autistic adults had about twice the odds of unmet physical healthcare needs (odds ratio 1.9) and unmet mental healthcare needs (odds ratio 2.2). They had about half the odds of having had a tetanus vaccination or a cervical screening (Pap) test (odds ratio 0.5 for each)^[9]. Emergency and hospital care has its own article.

The Doherty survey asked what happened next. Autistic respondents reported untreated mental health conditions (69%) and untreated physical health conditions (63%). Six in ten (60%) had been told they should have seen a doctor sooner, and 36% had needed more extensive treatment or surgery. Asked about screening programmes, 39% said they had not attended on schedule, against 21% of non-autistic respondents^[1]. Difficulty communicating with reception staff and with the doctor were each significantly linked to all six adverse outcomes the authors tested. That is an association, not proof of cause, but it is what you would expect if barriers delay care. In the Weir survey, 65% of autistic adults said they would wait until something was an emergency before seeing a professional, against 52% of non-autistic adults^[2].

The same gap appears in Canada. The 2019 Trans PULSE Canada survey, a community-recruited (not random) survey of trans and nonbinary people aged 14 and over, allows a comparison. In the past year, 54.8% of the 230 participants with an autism diagnosis and 60.9% of the 176 who self-identified as autistic reported an unmet healthcare need. Among the 2,452 non-autistic participants the figure was 42.6%. After adjustment, autistic participants had 1.50 (diagnosed) and 1.79 (self-identified) times the odds of an unmet need^[10].

Health records show gaps in cancer screening. Epic Research, analysing records for more than 6 million US adults who became eligible for screening between 2022 and 2024, found that patients with an autism diagnosis had 35.6% lower odds of on-time screening, after accounting for demographics, social vulnerability and rurality. Epic calls this a lower "likelihood", but its model is a logistic regression, so these are odds ratios, not differences in screening rates. The odds were 50.7% lower for cervical screening and 28.7% lower for breast screening. Colorectal screening was the exception: autistic patients had 12.1% higher odds of on-time screening, and at-home stool tests made up more of their screenings (46.2% vs 37.6%)^[11]. This work has not been through journal peer review, and the home-test link is an association only. In a small US clinic group, 31 of 82 autistic women aged 21 or over (38%) had ever had a Pap smear; that study had no non-autistic comparison group^[12]. These gaps matter because autistic people are more likely to have a range of physical health conditions and to die prematurely^[5]. Our article on autism and life expectancy sets out the size of that gap.

The same pattern in every country studied

These studies measure different things in different ways, so their figures cannot be compared directly or read as a trend. But every one finds autistic adults worse off than the non-autistic people they were compared with.

The Australian study shows how specific the barriers are. Handling the waiting room was a barrier for 42.2% of autistic participants against 1.4% of non-autistic participants. Identifying and reporting pain or physical symptoms was a barrier for 40.7% against 5.7%^[7]. Worry about cost affected both groups (44.9% vs 14.3%), a reminder that autism-specific barriers come on top of everyday ones.

What the evidence asks of us

The Doherty authors put it plainly: "Adjustments for autism-specific needs are as necessary as ramps for wheelchair users."^[1] The adjustments autistic adults ask for are mostly practical and cheap.

• Offer ways in that don't depend on the phone. Online or text booking, a way to send the reason for the visit in advance, a quiet place to wait and the first or last appointment of a session should be standard offers. In the UK surveys, for more than half of respondents all but three of the 18 listed adjustments were rarely or never available. Among the small group who had missed a physical health appointment, poor accessibility or a lack of adjustments was a factor for 45% (26 people)^[8].
• Record adjustments once, and make them follow the person. In Britain, the Equality Act 2010 places "a legal duty" on organisations to make services "as accessible to people with disabilities as they are for everybody else". NHS England's national Reasonable Adjustment Flag explicitly covers social and communication differences associated with autism. It has been live since 2019, but its roadmap scheduled onboarding of GP system suppliers to begin only in April to June 2026^[13]. Finishing that rollout is the obvious next step.
• Use tools that help both sides prepare. A US toolkit co-designed with autistic adults lets patients produce a personalised accommodations report for their doctor. In a before-and-after evaluation with 259 autistic adults and 51 primary care providers, the average number of barriers fell from 4.07 to 2.82, and 82% of providers rated the report moderately or very useful^[14]. There was no control group, so the size of the effect is uncertain. In northern England, a co-designed health check for autistic adults was delivered within a randomised controlled trial. Participants found it acceptable and valuable, but the researchers warn it needs funding, capacity and staff training to work at scale^[15].
• Make screening accessible. Screening programmes should be designed around sensory and communication needs. The colorectal finding hints that at-home options may help^[11].
• Train the workforce. Since 1 July 2022, every CQC-registered health and social care provider in England has had to train staff in learning disability and autism, under the Health and Care Act 2022. The Oliver McGowan Code of Practice took effect on 6 September 2025^[16].
• Plan nationally, and count what happens. The Australian researchers called for a national action plan^[7]. On 25 February 2025 Australia published a National Roadmap to Improve the Health and Mental Health of Autistic People 2025–2035. Its priorities include autism training for health professionals and "Autism Affirming" care across the lifespan^[17]. England's GP Patient Survey shows that routine national data can track access by autism status^[3]. Health systems should report it regularly and design changes with autistic people.

For the separate problem of waiting for an autism assessment, see The Autism Assessment Backlog. The full collection is at Autism & Health research.

Language: this piece uses identity-first language ("autistic people", "autistic adults"), which most autistic-led organisations prefer. It uses clinical terms such as "autism spectrum disorder" only when naming a study or diagnostic category.

Why we're publishing this

Health Insurance UK is a commercial health-insurance resource, not a charity and not a campaign. Autistic adults, and the autistic-led organisations and charities who speak up for them, have said for years that the front door of healthcare is not built for them. We brought the research behind their case together in one place, ready to show a GP practice, a commissioner or a minister. The case is theirs, not ours. What the studies show is plain: autistic adults are not avoiding care because they do not need it. They are running into barriers that can be fixed, and the fixes they ask for are mostly modest.

How to read this data

Most studies here are online surveys that people chose to answer, not random samples. The Weir authors note that both their groups leaned towards UK residents, white people, people assigned female at birth and graduates, and that people with an intellectual disability are unlikely to be well represented. They add that the differences may partly reflect "differences in perception and communication rather than differences in actual healthcare quality"^[2]. England's GP Patient Survey is a random, weighted sample (29.1% of those invited responded), but autism there is self-reported and includes people without a formal diagnosis; a third of that group (32.5%) also reported a learning disability^[3]. In the Doherty survey, 77% of autistic respondents had a formal diagnosis, and diagnosed and self-identified respondents reported similar barriers and outcomes^[1]. An odds ratio of 2 means twice the odds, which is close to twice the risk only when an outcome is uncommon. The Epic Research figures are adjusted odds ratios from health records and have not been peer reviewed.

Use this data

Free to cite with attribution to Health Insurance UK. Charities, campaigners, clinicians and journalists are welcome to reuse these figures and charts. For the underlying figures as a spreadsheet, get in touch.

Important: This article summarises published research for general information. It is not medical advice and cannot be used to diagnose, treat or predict anything about an individual. If you have concerns about your own or someone else's health, please speak to a qualified health professional.

Sources

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2. Weir E, Allison C, Baron-Cohen S. Autistic adults have poorer quality healthcare and worse health based on self-report data. Molecular Autism 13:23, 2022. europepmc.org/article/MED/35619147
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