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

Abstract

Objectives To investigate autistic people’s views on the importance and availability of adjustments to mental and physical healthcare provision. To explore whether specific categories of adjustments can be identified and to identify any differences in their importance and availability between mental and physical healthcare. Design Data from two studies, both employing a cross-sectional survey design. Setting UK-based autistic adults registered with the Adult Autism Spectrum Cohort-UK were contacted by post or online. In both studies, recruitment was staged over a 12-month period. Non-responders were sent a single reminder letter 2 weeks after initial contact. Participants 537 autistic adults completed a survey about mental health services (51% response rate), 407 completed the physical health survey (49% response rate). Within these samples, 221 participants completed both surveys. Primary outcome measures Each study developed a bespoke survey to explore participants’ views on mental and physical health services, respectively. Both included an identical list of adjustments that participants rated based on importance and availability. Results Three factors of important adjustments were identified: sensory environment, clinical and service context, and clinician knowledge and communication. Adjustments across healthcare settings were widely rated as being important yet rarely available. One significant difference between the importance of adjustments available through mental and physical health services was identified. Participants reported that having access to a clinician who is willing to adapt their approach to suit the person’s preferences was significantly more important for participants attending mental health settings (p=0.001). Conclusions Autistic people reported the limited availability of important adjustments in current healthcare provision. To address unmet need and tackle the health inequalities faced by autistic people attending physical and mental healthcare settings, healthcare providers should offer adjustments relating to the three identified factors. Future research should focus on identifying and addressing service provider barriers to implementation.

The Mediating Effects of Alexithymia, Intolerance of Uncertainty, and Anxiety on the Relationship Between Sensory Processing Differences and Restricted and Repetitive Behaviours in Autistic Adults

“…We used the SRS-2 to describe autism characteristics and to compare individuals with a formal and suspected diagnosis before inclusion as one group for analysis. Previous research using this PAT-A sample found no significant difference in autism characteristics between those with an autism spectrum diagnosis and those who suspected they were autistic or were awaiting diagnosis (Brice et al, 2021), which we confirmed in our own subsample of this dataset using the SRS-2 (t (377) = − 0.57, p = 0.5701). Therefore, we used a combined sample.…”

“…Table 1 shows sample demographic characteristics. There were no significant differences in key demographic variables, such as age, gender or autistic characteristics between responders and non-responders to this study (see Brice et al, 2021).…”

Improving Cognitive Behaviour Therapy for Autistic Individuals: A Delphi Survey with Practitioners

“…Barriers have also been described in the context of access to physical healthcare for autistic individuals, and include communication disconnect between practitioners and autistic individuals, the impact of sensory sensitivities, and practical issues associated with executive functioning (Mason et al, 2019 ). Additionally, findings are supported by a very recent survey study of 537 autistic adults that examined accessibility of physical and mental healthcare provision, and outlined similar barriers to care (Brice et al, 2021 ).…”

How can psychiatrists make mental health services more accessible for people with autism?

“…Adults with autism emphasised the importance and availability of key adjustments that could improve accessibility and acceptability of healthcare services. Brice et al 6 recently reported that these were the sensory environment, the clinical and service context, and clinician knowledge and understanding. Preferred sensory environments included rooms with smaller numbers of people and lower levels of noise and light.…”