Dataset Information

Interviewing autistic adults: Adaptations to support recall in police, employment, and healthcare interviews.

ABSTRACT: LAY ABSTRACT:During many types of interviews (e.g. in employment, with the police, and in healthcare), we need to recall detailed memories of specific events, which can be difficult for autistic people in response to commonly used questions. This is especially because these tend to be open questions (i.e. very broad). Autistic people have disproportionately high rates of physical and mental health conditions, are more likely to interact with police, and are the most underemployed disability group. However, interviewers are often unsure about how to adapt their communication for autistic people.Our research tested whether different types of prompts enabled autistic people to recall specific memories (memories of a single event within one day). Participants were asked about situations relating to witnessing a crime (e.g. at the bank), physical or mental health scenarios and employment interviews (e.g. a time you've met a deadline).We tested the following:Open questions: basic questions only (e.g. 'tell me about a time you went to the cinema'),Semantic prompting: a general prompt (e.g. 'do you enjoy going to the cinema?') before asking for a specific instance ('tell me about a time you went to the cinema?'),Visual-verbal prompting: asking participants to recall when it happened, who was there, the actions that occurred, the setting, and any objects.With visual-verbal prompting, autistic and typically developing participants' memories were more specific and detailed. Semantic prompting was also effective for employment questions. Our study shows that autistic people can recall specific memories when they are appropriately prompted. Visual-verbal prompting may be effective across different situations.

SUBMITTER: Norris JE

PROVIDER: S-EPMC7376628 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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Interviewing autistic adults: Adaptations to support recall in police, employment, and healthcare interviews.

Norris Jade Eloise JE Crane Laura L Maras Katie K

Autism : the international journal of research and practice 20200323 6

<h4>Lay abstract</h4>During many types of interviews (e.g. in employment, with the police, and in healthcare), we need to recall detailed memories of specific events, which can be difficult for autistic people in response to commonly used questions. This is especially because these tend to be open questions (i.e. very broad). Autistic people have disproportionately high rates of physical and mental health conditions, are more likely to interact with police, and are the most underemployed disabil ...[more]

PMID: 32202435

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Project description:BackgroundRecent research suggests that autistic individuals have shorter lifespans and experience worse health (greater health burden) than non-autistic individuals. Small, qualitative studies suggest that autistic adults also experience poor self-reported healthcare quality.MethodsAn anonymized, cross-sectional, self-report questionnaire was administered to n = 4158 individuals. The study assessed prevalence of chronic health conditions, healthcare quality, differences in overall health inequality score, and effects of the coronavirus pandemic on healthcare quality. We used Fisher's exact tests, binomial logistic regression, and predictive machine learning tools, as appropriate.ResultsThe final sample included n = 2649 participants (n = 1285 autistic) aged 16-96 years. Autistic adults reported lower quality healthcare than non-autistic adults across 50/51 items, including poorer access to healthcare and poorer communication, alongside increased anxiety, sensory sensitivity, system-level problems, shutdowns, and meltdowns. Differences between groups were stark: aggregated health inequality scores predicted autism diagnosis, even after stratifying by sex. Autistic adults were also more likely to have chronic health conditions than non-autistic adults. There were no significant differences in healthcare quality for autistic adults before and during the pandemic, although they received relatively poorer quality healthcare than non-autistic adults across both periods.LimitationsThe study's sampling methods are not likely to capture the perspectives of all autistic individuals, especially those with intellectual disability. Both the autistic and control samples are biased towards UK residents, white individuals, those assigned female at birth, and those who completed an undergraduate degree or higher education. As such, these results may limit their generalizability to other groups. Finally, these results relate to self-reported differences in healthcare quality between autistic and non-autistic adults. The observed group differences may in part reflect differences in perception and communication rather than differences in actual healthcare quality.ConclusionsAutistic adults are more likely to have chronic health conditions alongside self-reported lower quality healthcare than others. Health inequalities between these groups are widespread and dramatic; unfortunately, they existed before and have persisted after the onset of the coronavirus pandemic.

Project description: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.

Project description:BACKGROUND:The healthcare system is ill-equipped to meet the needs of adults on the autism spectrum. OBJECTIVE:Our goal was to use a community-based participatory research (CBPR) approach to develop and evaluate tools to facilitate the primary healthcare of autistic adults. DESIGN:Toolkit development included cognitive interviewing and test-retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/post-intervention comparison. PARTICIPANTS:A total of 259 autistic adults and 51 primary care providers (PCPs) residing in the United States. INTERVENTIONS:The AASPIRE Healthcare toolkit includes the Autism Healthcare Accommodations Tool (AHAT)-a tool that allows patients to create a personalized accommodations report for their PCP-and general healthcare- and autism-related information, worksheets, checklists, and resources for patients and healthcare providers. MAIN MEASURES:Satisfaction with patient-provider communication, healthcare self-efficacy, barriers to healthcare, and satisfaction with the toolkit's usability and utility; responses to open-ended questions. KEY RESULTS:Preliminary testing of the AHAT demonstrated strong content validity and adequate test-retest stability. Almost all patient participants (>94 %) felt that the AHAT and the toolkit were easy to use, important, and useful. In pre/post-intervention comparisons, the mean number of barriers decreased (from 4.07 to 2.82, p?<?0.0001), healthcare self-efficacy increased (from 37.9 to 39.4, p?=?0.02), and satisfaction with PCP communication improved (from 30.9 to 32.6, p?=?0.03). Patients stated that the toolkit helped clarify their needs, enabled them to self-advocate and prepare for visits more effectively, and positively influenced provider behavior. Most of the PCPs surveyed read the AHAT (97 %), rated it as moderately or very useful (82 %), and would recommend it to other patients (87 %). CONCLUSIONS:The CBPR process resulted in a reliable healthcare accommodation tool and a highly accessible healthcare toolkit. Patients and providers indicated that the tools positively impacted healthcare interactions. The toolkit has the potential to reduce barriers to healthcare and improve healthcare self-efficacy and patient-provider communication.

Dataset Information

Interviewing autistic adults: Adaptations to support recall in police, employment, and healthcare interviews.

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Interviewing autistic adults: Adaptations to support recall in police, employment, and healthcare interviews.

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