Overcoming barriers to autistic health care: towards autism-friendly practices

Johnson, Mona; Doherty, Mary; Shaw, Sebastian C K

doi:10.3399/bjgp22x719513

Cited by 4 publications

(1 citation statement)

References 11 publications

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“…1 These barriers and challenges are significant and have profound impact on healthcare delivery, patient and service user experience, physical and mental wellbeing, quality of life and life expectancy for autistic individuals. [2][3][4] Recent studies have shown that, because of these challenges and lack of reasonable adjustments in healthcare settings, autistic adults experienced difficulties in making healthcare appointments by telephone (62%), in feeling heard and understood (56%), difficulty in communicating with their doctor (53%) and experiencing anxiety in the waiting room environment (51%). 3 There is therefore great need for person-centred reasonable adjustments to ensure equity of healthcare provision for all service users.…”

Section: Introductionmentioning

confidence: 99%

Toward Autism-Friendly Magnetic Resonance Imaging: Exploring Autistic Individuals' Experiences of Magnetic Resonance Imaging Scans in the United Kingdom, a Cross-Sectional Survey

Stogiannos

Brammer

McNulty

et al. 2023

Autism in Adulthood

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Background: Autistic individuals might undergo a magnetic resonance imaging (MRI) examination for clinical concerns or research. Increased sensory stimulation, lack of appropriate environmental adjustments or lack of streamlined communication in the MRI suite may pose challenges to autistic patients and render MRI scans inaccessible. This study aimed to i) explore the MRI scan experiences of autistic adults in the UK, ii) identify barriers and enablers towards successful and safe MRI examinations, iii) assess autistic individuals' satisfaction with MRI service, and iv) inform future recommendations for practice improvement. Methods:We distributed an online survey to the autistic community on social media, using snowball sampling. Inclusion criteria were: being older than 16, have an autism diagnosis or self-diagnosis, self-reported capacity to consent and having had an MRI scan in the UK. We used descriptive statistics for demographics, inferential statistics for group comparisons/correlations, and content analysis for qualitative data. Results:We received 112 responses. A total of 29.6% of the respondents reported not being sent any information before the scan. Most participants (68%) confirmed that radiographers provided detailed information on the day of the examination but only 17.1% reported that radiographers offered some reasonable environmental adjustments. Only 23.2% of them confirmed they disclosed their autistic identity when booking MRI scanning. We found that quality of communication, physical environment, patient emotions, staff training and confounding societal factors impacted autistic people's experiences. Autistic individuals rated their overall MRI experience as neutral and reported high levels of claustrophobia (44.8%). Conclusion:The study highlighted a lack of effective communication and coordination of care, either between healthcare services or between patients and radiographers, and lack of reasonable adjustments as vital for more accessible and person-centred MRI scanning for autistic individuals. Enablers of successful scans included effective communication, adjusted MRI environment, scans tailored to individuals' needs/preferences, and well-trained staff.'' Request a private waiting room, if possible. Use any relaxation aids that they can provide. Make sure staff know of any autism-related factors you have, e.g. hyperacusis; it's LOUD in there''. Table 3. Key recommendations for practice. Challenge Implication Recommendations • Poor communication and lack of adequate information provided to service user by radiology prior to scanning. • Adjust communication style to the individual. 10,21 • Ensure communication and coordination of services between GPs/referring consultants and Radiology. 24 • Implement tailored pre-scan communication COMFORT

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Section: Introductionmentioning

confidence: 99%

Toward Autism-Friendly Magnetic Resonance Imaging: Exploring Autistic Individuals' Experiences of Magnetic Resonance Imaging Scans in the United Kingdom, a Cross-Sectional Survey

Stogiannos

Brammer

McNulty

et al. 2023

Autism in Adulthood

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Autism in ICU

Baruah

2024

Journal of the Intensive Care Society

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Autism is a lifelong neurodevelopmental condition. Autistic people face challenges as patients in the intensive care unit (ICU) and as providers of healthcare in the ICU. This article describes the experience of autistic people using a neurodiversity-affirming approach. Using the ‘Autistic SPACE’ framework, the needs of autistic people are described in terms of sensory needs, need for predictability, need for autistic acceptance, communication differences and how to approach them, and the benefits of a person-centred empathy-based approach to autistic people. The approach to autistic patients is described in terms of reasonable adjustments within a framework of positive risk taking. For supervisors and managers of autistic healthcare professionals, autism-friendly adjustments to training and working practice, with rationales, are suggested.

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Levelling up, with autism in mind

Abbey

2024

Journal of the Intensive Care Society

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Overcoming barriers to autistic health care: towards autism-friendly practices

Cited by 4 publications

References 11 publications

Toward Autism-Friendly Magnetic Resonance Imaging: Exploring Autistic Individuals' Experiences of Magnetic Resonance Imaging Scans in the United Kingdom, a Cross-Sectional Survey

Toward Autism-Friendly Magnetic Resonance Imaging: Exploring Autistic Individuals' Experiences of Magnetic Resonance Imaging Scans in the United Kingdom, a Cross-Sectional Survey

Autism in ICU

Levelling up, with autism in mind

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