Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study

Abstract

ObjectivesAutistic people experience poor physical and mental health along with reduced life expectancy compared with non-autistic people. Our aim was to identify self-reported barriers to primary care access by autistic adults compared with non-autistic adults and to link these barriers to self-reported adverse health consequences.DesignFollowing consultation with the autistic community at an autistic conference, Autscape, we developed a self-report survey, which we administered online through social media platforms.SettingA 52-item, international, online survey.Participants507 autistic adults and 157 non-autistic adults.Primary and secondary outcome measuresSelf-reported barriers to accessing healthcare and associated adverse health outcomes.ResultsEighty per cent of autistic adults and 37% of non-autistic respondents reported difficulty visiting a general practitioner (GP). The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (72%), difficulty making appointments by telephone (62%), not feeling understood (56%), difficulty communicating with their doctor (53%) and the waiting room environment (51%). Autistic adults reported a preference for online or text-based appointment booking, facility to email in advance the reason for consultation, the first or last clinic appointment and a quiet place to wait. Self-reported adverse health outcomes experienced by autistic adults were associated with barriers to accessing healthcare. Adverse outcomes included untreated physical and mental health conditions, not attending specialist referral or screening programmes, requiring more extensive treatment or surgery due to late presentations and untreated potentially life-threatening conditions. There were no significant differences in difficulty attending, barriers experienced or adverse outcomes between formally diagnosed and self-identified autistic respondents.ConclusionsReduction of healthcare inequalities for autistic people requires that healthcare providers understand autistic perspectives, communication needs and sensory sensitivities. Adjustments for autism-specific needs are as necessary as ramps for wheelchair users.

Healthcare Barriers, Health Outcomes, and Annual Health Checks for Autistic Adults: A Cross-Sectional Study of General Practitioners’ Knowledge, Attitudes and Practices

“…Maddams and Pearson (2013) found that autistic patients identified ease of access to GPs (such as timing and location of visits and flexibility of appointment times), patient anxiety prior to a consultation, and communication between doctor and patient during a consultation as the most difficult issues prior to and during a consultation with their GP. Doherty et al (2022) also identified these issues. Many GPs are likely to find it counter-intuitive that autistic people with no ID often have difficulty in accessing health care, many aspects of autism being difficult for non-autistic people to understand (Beardon, 2017).…”

“…Many GPs are likely to find it counter-intuitive that autistic people with no ID often have difficulty in accessing health care, many aspects of autism being difficult for non-autistic people to understand (Beardon, 2017). The difficulty accessing healthcare applies both to individuals who have received a formal diagnosis of autism and to those who have self-identified as autistic, and leads to adverse health outcomes (Doherty et al, 2022).…”

“…Given that autism is spread fairly evenly throughout the population, the gap between those who say they see autistic patients daily and those who see them monthly is of interest. Doherty et al (2022) recently reported that 'doctors may underestimate… the number of autistic patients under their care.' Given that a significant number of our participants were either autistic, or displayed considerable knowledge of autism, this gap may reflect differences in understanding of autism.…”

“…Casanova et al (2020, p. 1) found that: 'The abundance of chronic conditions … in modern medicine makes comorbidity the norm rather than the exception'; for example, about 42% of adult Americans had multiple chronic conditions in 2014'. Doherty et al (2022) concluded that 'Autistic adults have poor physical and mental health compared to the general population'. Medical conditions such as diabetes, hypertension and obesity are common.…”

Mind the Gap! Developing Patient Responsive Information for Epilepsy

“…During a review of common online epilepsy peer support platforms (MyEpilepsyTeam, Brain Ablaze, Facebook groups and #epilepsy threads in Twitter, Instagram and TikTok), it became apparent that people with epilepsy require advice which is not being addressed through media supplied for patient use by healthcare/clinical services. Lived experience accounts detail the difficulties with asking questions at appointments: embarrassment (11), focus on clinical issues (12), not wanting to "waste clinicians time" (13), not having a relationship with the clinician (14), and forgetting to ask/lack of understanding (15). A virtual platform provides a forum to pose questions when they arise, using an anonymous format.…”