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Autistic people experience significant health disparities and reduced life expectancy. Barriers to accessing healthcare are associated with adverse health outcomes. Autism training and healthcare professionals' knowledge about autism is variable, and heterogeneity among autistic people leads to additional educational and clinical complexities. Auti...
Contexts in source publication
Context 1
... with pain perception can lead to unrecognised injuries but it must be emphasised that while reduced pain sensitivity occurs for some, others experience increased pain sensitivity, and this should never result in under-treatment of pain for autistic patients Acceptance leads to appropriate accommodations, including understanding that so called 'challenging behaviour' is usually a response to autistic needs not being adequately met ( McDonnell et al, 2015). Furthermore, acceptance means acknowledging the responsibility on carers and healthcare providers to make adaptations, rather than expecting autistic people to adapt to an environment designed for the non-autistic majority (Haydon et al, 2021). ...
Context 2
... in the use of gaze, eye contact, gestures and posture can lead to erroneous interpretation if autistic communication is not understood and accepted (Royal College of Psychiatrists, 2020;Doherty et al, 2021). The traditional signs of distress or pain, for example, may not be evident (Haydon et al, 2021). An autistic person might tolerate a painful examination silently without even wincing, leading a healthcare provider to misinterpret findings ( Haydon et al, 2021). ...
Context 3
... processing and managing emotions can be challenging (Cai et al, 2018), particularly when autistic ways of expressing emotions are not understood or accepted (Brewer et al, 2016). Sensory overload or overwhelming emotions may lead to autistic meltdown or shutdown. ...
Context 4
... this will minimise risks, but if it occurs, the best approach is often to allow space to recover. Commonly, such situations are inadvertently escalated (Phung et al, 2021). Where a non-autistic person might be soothed by a gentle touch, the same gesture might be intolerable to an autistic person, leading to a defensive or aggressive reaction ( Smirni et al, 2019). ...
Citations
... Since the publication of this chapter in 2019 1 , studies have continued to identify that autistic adults experience more barriers to healthcare access than nonautistic adults (S. Arnold et al., 2019;Doherty et al., 2020Doherty et al., , 2022Doherty et al., , 2023Walsh, Lydon, Hehir, et al., 2020), and those who are for the most part independent, face the greatest struggles to accessing primary healthcare (Chown et al., 2022). ...
Background: Studies from around the world have shown that autistic adults often experience multiple barriers to accessing healthcare and report more barriers to healthcare than non-autistic adults. Autistic adults have also consistently reported experiencing challenges in both physical and mental well-being, coupled with a diminished life expectancy when contrasted with their non-autistic counterparts. Yet, we know little about the experiences of Australian autistic adults in general practice settings.
Aim: To develop an in-depth understanding of the factors contributing to the care that autistic adults receive in Australian general practice settings – from the perspectives of autistic adults themselves, their supporters, and general practitioners (GPs).
Methods: I completed in-depth semi-structured interviews with 34 autistic adults, four supporters and 15 GPs in their preferred method (i.e., Zoom, telephone, email). Most autistic adult participants were white (n = 28; 82%), female (n = 24; 70%) and ranged in age from 26 to 73 years (M = 41.93, SD = 11.48). Most supporters were white (n = 3; 75%) and all were women (n = 4; 100%), ranging in age from 51 to 72 years (M = 61, SD = 7.8). Most GP participants were white (n = 12; 80%), female (n = 11; 73%), ranged in age from 28 to 60 years (M = 45.4, SD = 7.6), had worked as a GP for 5 – 25 years, and had not received any formal autism specific training prior to obtaining their primary qualification (n = 10; 66%), or post obtaining their primary qualification (n = 11; 73%). I collaborated with a ‘Community Council’ of ten Australian autistic adults from a range of diverse age, gender, employment, and educational backgrounds in the development of the research aim, interview questions, and participant-facing materials. During the interviews, autistic and supporter participants were asked about six areas: GP consultation experiences, waiting at the GP clinic, disclosure of an autism diagnosis and seeking an [autism] assessment referral, accessing GP services during COVID-19 and what participants want GPs to know about autism and do differently. During interviews with GPs, I also asked about their knowledge and perceptions of, and attitudes towards, autistic people; the clinic environment; diagnosing autism; impact of
COVID-19 restrictions; and GP education and training. I analysed the interview transcripts using reflexive thematic analysis. I also used a neuro-affirming and critical autism studies approach to inform my analysis, as well as an epistemic justice framework to preface my conclusions.
Results: My thesis comprises four distinct research studies aimed at elucidating the general practice experiences of autistic adults. The first study (Chapter 2) was a systematic literature review to delineate barriers and facilitators to healthcare access for this population. I identified a range of challenges encompassing provider-level factors including inadequate knowledge and biased attitudes, and system-level issues such as limited accessibility. Additionally, I highlighted the scarcity of evidence-based health supports tailored to autistic adults. These findings were confirmed and extended by the results of my empirical work (Chapters 5 – 7). In Chapter 5, I present the results from the interview study on GPs’ perceptions of autistic people and how these perceptions impact healthcare interactions, as reported by autistic adults, their supporters, and GPs. In Chapter 6, I examine how patient-provider interactions in primary care settings affect autistic patients’ physical health specifically. Finally, in Chapter 7, I further interrogate the responses of autistic adults, their supporters and GPs to understand autistic experiences of seeking care in general practice. I unveiled pervasive negative interactions and outcomes experienced by autistic adults. I also revealed a notable lack of contemporary knowledge and subconscious biases among GPs about autism and being autistic, which appeared to impact healthcare provision. Similarly, supporters exhibited gaps in understanding, exacerbating the challenges faced by autistic adults in general practice settings. Limited contemporary understandings of ‘autism’ and prejudiced attitudes led to undiagnosed or misdiagnosed physical and mental health conditions, causing medical gaslighting and iatrogenesis. Autistic adults described feeling objectified and disempowered as a result of these issues when interacting with GPs in Australian general practice settings.
Conclusion: My research challenges medical interpretations of ‘autism’ and demonstrates epistemic violence in the Australian general practice experiences of autistic adults. Pernicious ignorance and epistemicide of ‘autism’ interpretations, coupled with knowledge-based epistemic violence within healthcare, including general practice, result in testimonial silencing and smothering. To ensure the healthcare needs, preferences, and rights of autistic adults are upheld and that epistemic justice is promoted, I advocate for epistemic respect and recognition through contemporaneous neuro-affirming autistic-led education and training for general practice staff and medical students. My findings underscore the imperative for comprehensive reforms in healthcare practices and provider education and training to bridge the existing gaps and cater effectively to the healthcare needs and rights of autistic adults.
... While it is anticipated that length of completion may diminish over time as facilitators become more experienced, the increase in indicators is indicative of the complexities of inclusion requirements from the perspectives of patients with disabilities, and the heterogeneity of these. Indeed, there are further indicators that were not assessed in the adapted tool, such as lighting, which may impact how people with visual or developmental disabilities access health facilities [37,38]. There is an ongoing trade-off between completeness and feasibility, which led us to prioritise the most critical indicators for health service access. ...
Background
People with disabilities frequently experience barriers in seeking healthcare that lead to poorer health outcomes compared to people without disabilities. To overcome this, it is important to assess the accessibility of primary health facilities – broadly defined to include a disability-inclusive service provision – so as to document present status and identify areas for improvement. We aimed to identify, adapt and pilot test an appropriate tool to assess the accessibility of primary health facilities in Luuka District, Uganda.
Methods
We conducted a rapid literature review to identify appropriate tools, selecting the Disability Awareness Checklist (DAC) on account of its relative brevity and development as a sensitization and action tool. We undertook three rounds of adaptation, working together with youth researchers (aged 18–35) with disabilities who then underwent 2 days of training as DAC facilitators. The adapted tool comprised 71 indicators across four domains and 12 sub-domains. We also developed a structured feedback form for facilitators to complete with healthcare workers. We calculated median accessibility scores overall, per domain and per sub-domain, and categorised feedback form suggestions by type and presumed investment level. We pilot-tested the adapted tool in 5 primary health facilities in one sub-district of Luuka, nested within a pilot healthcare worker training on disability.
Results
The median overall facility accessibility score was 17.8% (range 12.3–28.8). Facility scores were highest in the universal design and accessibility domain (25.8%, 22.6–41.9), followed by reasonable accommodation (20.0%, 6.7–33.3). Median scores for capacity of facility staff (6.67%, 6.7–20.0), and linkages to other services were lower (0.0%, 0–25.0). Within the feedback forms, there were a median of 21 suggestions (range 14–26) per facility. Most commonly, these were categorised as minor structural changes (20% of suggestions), with a third categorised as no (2%) or low (33%) cost, and the majority (40%) medium cost.
Conclusions
Overall accessibility scores were low, with many opportunities for low-cost improvement at the facility level. We did not identify any issues with the implementation of the tool, suggesting few further adaptations are required for its future use in this setting.
... For example, a social worker can display acceptance of methods of emotional regulation and diverse ways of demonstrating and communicating affective states. Doherty, McCowan, and Shaw (2023) provide examples of how stimming behaviours used by Autistic persons for self-regulation can be accepted without prejudice. These may be repeated sounds or phrases uttered without apparent meaning for the non-autistic person, or behaviours such as pacing that may require pauses in the worker's questions or examination. ...
... Autistic SPACE framework (fromDoherty et al. 2023). ...
Social work has a vital role to play in supporting Autistic people of all ages. Whether in facilitating access to other services, such as housing, enhancing quality of life, or in a safeguarding capacity, social workers have a legal and moral responsibility to ensure their practice ensures full, equitable involvement of Autistic people. Regrettably, research evidence indicates practice is not always inclusive and can fall short in responding effectively to Autistic people’s needs. This article adds to recent UK practice guidance and social work scholarship concerning social work and autism. It does so by introducing a framework developed by Autistic doctors for meeting Autistic people’s needs in medical settings known as ‘Autistic SPACE’ and exploring how it could be used for social work contexts. The five core autistic needs recognised in the SPACE framework are addressed, i.e. Sensory, Predictability, Acceptance, Communication and Empathy. How a practice-near social work perspective may aid in developing the framework further is also considered, extending the acronym from SPACE to SPACES to highlight the significance of Social Safety and Support.
... It is important that students feel confident in the key areas of adaptions, such as those outlined in the SPACE framework. 52 In addition, by using adapted communication to understand how to meet a particular patient's needs, they can provide care that is person-centred. ...
... Similarly, education and training for all radiographers on their educational impact and responsibilities should be provided. 2) Radiographers and student radiographers should utilise the SPACE framework, 52 which is accessible and provides key considerations for working with autistic individuals. 3) To better prepare students for working with autistic patients, universities should incorporate more comprehensive training on autism and provide opportunities for simulated practice. ...
Introduction
Healthcare services can be inaccessible to autistic people without adaptions to clinical practice and the care provided. Therefore, understanding how radiographer education develops students' confidence in adapting care for autistic patients is crucial. This study aimed to explore how placement experience impacts student radiographer confidence in adapting care for autistic patients.
Methods
UK final-year student diagnostic and therapeutic radiographers were invited to complete a qualitative online survey. The survey asked for a description of placement experiences; of observing and/or performing the care of autistic patients and how this impacted confidence in caring for autistic patients. The data was thematically analysed.
Results
43 responses (of 44 received) were included, from which 5 themes emerged. Those who felt placement experiences developed confidence described opportunities to apply theory learnt at university (theme 1) or drew attention to the benefit of prior (external) experience with autistic people (theme 3). However, the balance of power with the supervising radiographer (theme 2), witnessing autistic patients in distress (theme 4), and the heterogeneous nature of autism (theme 5) disrupted students’ development of confidence.
Conclusion
Several participants in this study found clinical placement developed confidence with autistic patients through applying knowledge and providing an opportunity for reflexive learning. However, various obstacles hindered this development, such as witnessing distressed patients, limited experiences with autistic patients and difficulty navigating relationships with radiographers.
Implications for practice
To improve student radiographers’ confidence of providing care for autistic patients, educators should consider methods, e.g., co-produced simulation, to fill potential gaps in their experience. There is also a pressing need for all radiographers to understand their responsibility in educating students and their impact on student wellbeing.
... Most psychiatric units lack the consistency, structure, and calm sensory environment necessary for this group (6,7). Unsupportive environments, along with poorly trained staff, can escalate distress and increase restraint use and seclusion, contributing to further deterioration, reduced communication and adaptive skills, and increased risk for being a victim of abuse (7,8). ...
Adults with intellectual and developmental disabilities (IDD) who also have a co-occurring mental illness are almost five times as likely to experience a delayed hospital discharge as adults with mental illness only. Such delays occur when a patient no longer requires hospital-level care but cannot be discharged, often because of a lack of appropriate postdischarge settings. Delayed discharges contribute to poor patient outcomes, increased system costs, and delayed access to care. Recently, practice guidance was developed in Canada, identifying 10 components of successful transitions for this population. Core to this guidance is a patient-centered, cross-sectoral approach, including the patient, family, hospital team, community health care providers, and IDD providers.
... This pervasive experience of heightened anxiety contributed to a very challenging experience of life, typified by Aoife discussing feeling a lack of control or predictability which made her feel 'vulnerable on the edge of helplessness'. These perspectives align with previous accounts which reference a need for predictability (Doherty et al., 2023) and intolerance uncertainty (Johnson & Saunderson, 2023) in accounts of those with PDA which led to 'approach-avoidance' behaviour patterns (Johnson & Saunderson, 2023). An anxiety regarding unpredictability in the responses of others and trauma from past negative social interactions lead many with PDA to experience high levels of anxiety regarding socialising with others (Johnson & Saunderson, 2023). ...
This study explores the lived experiences of adults with Pathological Demand Avoidance (PDA) in Ireland. There is a paucity of research exploring the experience of those living with PDA in Ireland which impacts levels of awareness and understanding of anxiety-based demand avoidance and its intersection with autism. As lifelong conditions, this has implications for adults who can struggle to access services or appropriate supports or can be isolated in the transition from Child and Adolescent services. This paper extracts data from a national study, Mapping Experiences of Pathological Demand Avoidance in Ireland, and examines the lived experience and personal histories of adults with a diagnosis of / self-identifying with PDA and autism, consisting of statements extracted from open-ended survey responses, and in-depth interviews. A deductive approach to the analysis of their testimonies discovered four superordinate themes: (1) Bidirectional social challenges, (2) Life experiences, (3) Trust and safety and (4) Accepting our truth. Subordinate leitmotifs describe: Pervasive anxiety, Challenges negotiating life demands and Flexibility in education settings. This paper reveals the interplay between PDA, autism and mental health for these participants combined, leading to significant challenges in daily life. To support better life quality and flourishing, participants advised greater autonomy and flexibility of support across all aspects of life and more awareness of PDA across society.
... As noted by autistic participants in MacLennan et al 10 and in the current study, receiving support and listening to suggestions from professionals and other autistic people could be a source for self-understanding of their sensory experiences and help improve their abilities to manage undesired sensory experiences. However, communication difficulties and sensory challenges in medical settings may be barriers for some autistic people to meet their support needs, 11,43,44 signaling the necessity of facilitating access to healthcare and services for autistic adults. 37,44,45 In addition to making public places more sensory enabling for autistic individuals, 11 future researchers and designers could consider other possible improvements in sensory equipment, such as developing noise-canceling headphones with tuneable targeting loudness and frequency, to meet a wider range of individual sensory needs. ...
... However, communication difficulties and sensory challenges in medical settings may be barriers for some autistic people to meet their support needs, 11,43,44 signaling the necessity of facilitating access to healthcare and services for autistic adults. 37,44,45 In addition to making public places more sensory enabling for autistic individuals, 11 future researchers and designers could consider other possible improvements in sensory equipment, such as developing noise-canceling headphones with tuneable targeting loudness and frequency, to meet a wider range of individual sensory needs. ...
... Unfortunately, higher utilization of healthcare services has not been translated into high-quality care or optimal health. On the contrary, current literature suggests suboptimal care practices, lower satisfaction with services and providers [10][11][12], and poor health quality among autistic patients [13]. For instance, evidence suggests challenges with providing important aspects of preventative care to autistic individuals [14]. ...
... Furthermore, the built environment should prioritize safety with appropriate security measures, particularly for autistic children or adults who might not apprehend danger. Different frameworks and approaches have been proposed to consolidate these strategies and facilitate their application in different settings [10,94]. ...
... Autistic SPACE is a novel framework designed to represent the barriers and solutions of the autistic experience in healthcare settings using a memorable acronym (S for sensory needs, P for predictability, A for acceptance, C for communication, and E for empathy) [10]. This framework aims to fulfill autistic patients' needs for a "wider" physical, processing, and emotional space to achieve an ideal healthcare experience. ...
Disparities in healthcare access, delivery, and outcomes exist between autistic and non-autistic individuals. Autism-friendly healthcare initiatives aim to facilitate and improve the healthcare experience of autistic individuals by addressing commonly encountered challenges. While there is no consensus regarding the definition of autism-friendly healthcare, in this narrative review, we examine previously published research to determine the most important components of autism-friendly healthcare. Patient-related factors, provider-related factors, and system-related factors should be addressed. Proactivity, flexibility, and collaboration should guide the process of transforming the healthcare system. Finally, multiple strategies can be utilized as appropriate to the setting and individuals.
... Most educators noted that systems level changes were needed to facilitate significant change for SGD Autistic educators rather than putting the onus on individual changemakers. This mirrors the work done by O'Neill and Kenny who used Bronfenbrenner's Ecological Model to theorize the different contingencies and systems at play for Irish Autistic educators.In our study's thematic analysis of the barriers and facilitators to Autistic educator mental health and flourishing, the team created our own conceptual model based on the SPACE model(Doherty et al., 2023), Job Demand-Resources Model(Bakker & Demerouti, 2017) andBronfenbrenner's Ecological Model(Bronfenbrenner, 2000) (see Appendix G for our conceptual model). This was done to describe factors that can either facilitate spaces of flourishing or generate barriers to Autistic mental health and wellbeing. ...
This study explored the intersection of Autistic burnout and educator burnout and it’s the impact on mental health and wellbeing for Autistic educators in the United States. Through collaboration with five Autistic Community Partners (ACPs), the research team interviewed five Autistic Educators (AEs) who had left the field of education about their experiences with burnout, flourishing, mental health, and quality of life. Reflexive and template thematic analysis were used to understand the differences between Autistic and educator burnout, barriers and facilitators to Autistic mental health and flourishing, and recommendations to support Autistic mental health. Six themes were co-constructed by the research team and then sent back to the AEs for review and member checks. Results indicated that Autistic and educator burnout are separate but intertwined phenomena that deeply affect the mental health and wellbeing of Autistic educators, even after leaving the teaching profession. Recommendations provided by AEs included rejecting neuronormative and heteronormative standards in education, creating neuroinclusive spaces that allow all educators to feel psychologically safe, and fostering spaces for Autistic flourishing within school environments. Limitations of the study and future research is discussed, as well as recommendations for promoting Autistic flourishing and mitigating barriers to educator mental health.
... Thus, we recommend that all three of these levels are considered in any intervention which proposes to utilise an AHP or similar tool. The Autistic SPACE framework, developed by Autistic doctors, may hold promise [34] but has not yet been evaluated for feasibility of implementation. ...
Background
Autistic people are more likely to experience stigma, communication barriers and anxiety during healthcare. Autism Health Passports (AHPs) are a communication tool that aim to provide information about healthcare needs in a standardised way. They are recommended in research and policy to improve healthcare quality.
Aim
To explore views and experiences of AHPs among Autistic people from the UK who have been pregnant.
Methods
We developed an online survey using a combination of open and closed questions focused on healthcare impairments and views and experiences of AHPs. Data were anlaysed using descriptive statistics, Kruskal-Wallis tests, and content analysis.
Findings
Of 193 Autistic respondents (54% diagnosed, 22% undergoing diagnosis and 24% self-identifying), over 80% reported anxiety and masking during healthcare always or most of the time. Some significant differences were identified in healthcare (in)accessibility by diagnostic status. Only 4% of participants knew a lot about AHPs, with 1.5% of participants using one at least half of the time. Almost three quarters of respondents had not previously seen an AHP. Open text responses indicated that the biggest barrier to using an AHP was a belief that health professionals would discriminate against Autistic patients. Additional barriers included staff lack of familiarity with AHPs and respondents expecting a negative response to producing an AHP.
Conclusions
Our findings suggest that AHPs are not reducing health inequalities for Autistic adults who have been pregnant. Alternative solutions are needed to reduce health inequalities for Autistic people.
