Barriers to healthcare for autistic adults: Consequences & policy implications. A cross-sectional study

Abstract

Background: Autism is associated with reduced life expectancy, poor physical and mental health, and increased prevalence of epilepsy, obesity, hypertension, diabetes and stroke. Aim: To quantify self-reported barriers to healthcare and their consequences amongst autistic adults and compare with parents of autistic children and non-autistic controls Design and Setting: An online survey was developed from a qualitative study undertaken at Autscape, an autistic conference. Method: Thematic analysis of 75 responses was used to develop a 57-item online survey completed by 1,271 autistic adults, 406 parents of autistic children and 303 control subjects. Results: Difficulty visiting a GP was reported by 78.2% of autistic adults, 51.4% of parents and 34.9% of controls. The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (71.9%), difficulty using the telephone to book appointments (60.7%), not feeling understood (55.5%) and difficulty communicating with their doctor (53.0%). A higher rate of adverse health outcomes was reported by autistic adults; 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. Autistic adults reported a need for online or text based appointment booking, facility to email in advance the reason for consultation, first or last clinic appointment and a quiet place to wait. Conclusion: Reduction of healthcare inequalities for autistic people requires that healthcare providers understand autistic culture and communication needs. Adjustments for autistic communication needs are as necessary as ramps are for wheelchair users.

How do core autism traits and associated symptoms relate to quality of life? Findings from the Longitudinal European Autism Project

“…Furthermore, mental health problems may present a barrier to accessing services (e.g. anxieties around healthcare settings, mental health perceived as ‘challenging behaviour’), increasing unmet healthcare needs ( Doherty et al, 2020 ; Mason et al, 2018 ; Nicolaidis et al, 2013 ). Therefore, a targeted focus on improving mental health for autistic individuals may also aid in the wider management of physical health concerns commonly experienced in autism and individuals’ subjective satisfaction with their physical well-being.…”

The importance and availability of adjustments to improve access for autistic adults who need mental and physical healthcare: findings from UK surveys

“…[21][22][23] A recent study concluded that 'adjustments for communication needs are as necessary for autistic people as ramps are for wheelchair users'. 14 Evidence suggests that adjustments to services such as reducing exposure to potentially aversive sensory stimuli (eg, noisy waiting rooms) and the clinician using the autistic adult's preferred communication methods, do facilitate effective healthcare access for autistic people. 13 However, the importance and availability of specific adjustments across healthcare settings is unknown.…”

“…Recent research indicates that these barriers prevent autistic people from arranging and attending healthcare appointments. 14 In addition, other individual factors, such as difficulties coping with the potential uncertainty of healthcare situations 15 and pre-existing anxiety, 8 may make the experience of attending healthcare appointments especially problematic for autistic people. Further, although the UK National Health Service (NHS) is publicly funded and free at the point of access, in other countries the affordability of healthcare has been shown to be a barrier that is disproportionately more likely to affect autistic people.…”

COVID-19 health and social care access for autistic people: European policy review

“…For example, physical health conditions are experienced at substantially higher rates by autistic people compared with the general population, including conditions associated with high risk of severe illness from COVID-19 (eg, cardiovascular or immune conditions, diabetes, obesity). [10][11][12] In addition, autistic people experience numerous existing barriers to accessing general healthcare, 13 which may also increase their risk of being excluded from COVID-19 services. These barriers include communication or interpretation difficulties, which can lead to misunderstandings by healthcare providers and reduced involvement of patients in healthcare decision making (and might be exacerbated by mask wearing, which reduces the availability of non-verbal facial cues during interaction); difficulties adjusting to change and novel procedures; sensory sensitivities (eg, around physical examinations, mask wearing); difficulties identifying or describing pains and symptoms; and inconsistent specialist clinician training, awareness and knowledge about autism and intellectual disability.…”