Dataset Information

Autism in Australia: Community Knowledge and Autistic People's Experiences.

ABSTRACT: This paper presents two studies that explored community attitudes to autism in Australia; and autistic people and their families' perspectives of community attitudes. In Study One 2424 (primarily non-autistic) people completed a survey on autism-related knowledge and attitudes; identifying a number of misperceptions and knowledge gaps in the general community. In Study Two 1353 people (primarily parents and carers of autistic people) completed a survey on autism-related experiences; identifying that the community's awareness of autism does not appear to extend to understanding how to support autistic people. There is a need for more research which integrates the perspectives of both autistic people and the broader community; and the development of communication and education interventions, with rather than about autistic people.

SUBMITTER: Jones SC

PROVIDER: S-EPMC7778837 | biostudies-literature | 2021 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Autism in Australia: Community Knowledge and Autistic People's Experiences.

Jones Sandra C SC Akram Muhammad M Gordon Chloe S CS Murphy Nicole N Sharkie Fiona F

Journal of autism and developmental disorders 20210103 10

This paper presents two studies that explored community attitudes to autism in Australia; and autistic people and their families' perspectives of community attitudes. In Study One 2424 (primarily non-autistic) people completed a survey on autism-related knowledge and attitudes; identifying a number of misperceptions and knowledge gaps in the general community. In Study Two 1353 people (primarily parents and carers of autistic people) completed a survey on autism-related experiences; identifying ...[more]

PMID: 33389303

Similar Datasets

Project description:BackgroundAutistic people and those with high autistic traits are at high risk of experiencing suicidality. Yet, there are no suicidality assessment tools developed or validated for these groups.MethodsA widely used and validated suicidality assessment tool developed for the general population (SBQ-R), was adapted using feedback from autistic adults, to create the Suicidal Behaviours Questionnaire-Autism Spectrum Conditions (SBQ-ASC). The adapted tool was refined through nine interviews, and an online survey with 251 autistic adults, to establish clarity and relevance of the items. Subsequently, 308 autistic, 113 possibly autistic, and 268 non-autistic adults completed the adapted tool online, alongside self-report measures of autistic traits (AQ), camouflaging autistic traits (CAT-Q), depression (PHQ-9), anxiety (ASA-A), thwarted belongingness and perceived burdensomeness (INQ-15), lifetime non-suicidal self-injury, and the original version of the suicidality assessment tool (SBQ-R). Analyses explored the appropriateness and measurement properties of the adapted tool between the groups.ResultsThere was evidence in support of content validity, structural validity, internal consistency, convergent and divergent validity, test-retest validity, sensitivity and specificity (for distinguishing those with or without lifetime experience of suicide attempt), and hypothesis testing of the adapted tool (SBQ-ASC) in each group. The structure of the SBQ-ASC was equivalent between autistic and possibly autistic adults, regardless of gender, or use of visual aids to help quantify abstract rating scales.LimitationsThe samples involved in the development and validation of the adapted tool were largely female, and largely diagnosed as autistic in adulthood, which limits the generalisability of results to the wider autistic population. The SBQ-ASC has been developed for use in research and is not recommended to assess risk of future suicide attempts and/or self-harm. The SBQ-ASC has been designed with and for autistic and possibly autistic adults, and is not appropriate to compare to non-autistic adults given measurement differences between these groups.ConclusionsThe SBQ-ASC is a brief self-report suicidality assessment tool, developed and validated with and for autistic adults, without co-occurring intellectual disability. The SBQ-ASC is appropriate for use in research to identify suicidal thoughts and behaviours in autistic and possibly autistic people, and model associations with risk and protective factors.

Project description:PurposePeople with autism face significant barriers when accessing healthcare services. Eye examinations present unique challenges. Accessibility of this healthcare sector for people with autism has not been investigated previously. The aim of this research was to investigate eye examination accessibility for autistic adults and produce recommendations for autism-friendly eyecare.MethodsTwo qualitative studies were conducted. In Study 1, 18 autistic adults took part in focus groups to elicit their eye examination experiences. Transcripts of the recorded discussions were thematically analysed. Study 1 findings were used to design autism-friendly eye examinations for autistic adults. These were conducted in Study 2. Twenty-four autistic adults participated in these examinations, during which they were interviewed about their experience and how it might be improved by reasonable modifications. Audio recordings of the interviews were content analysed.ResultsKnowledge of what to expect, in advance of the eye examination, could greatly reduce anxiety. Participants liked the logical structure of the examination, and the interesting instrumentation used. However, the examination and practice environment did include sensory challenges, due to lights, sound and touch. Changes in practice layout, and interacting with multiple staff members, was anxiety provoking. Participants expressed a need for thorough explanations from the optometrist that outlined the significance of each test, and what the patient was expected to do.ConclusionA number of accessiblity barriers were identified. These suggested that UK eye examinations are not very accessible for autistic adults. Barriers began at the point of booking the appointment and continued through to the dispensing of spectacles. These caused anxiety and stress for this population, but could be reduced with easy-to-implement adaptations. Based on the findings, recommendations are presented here for the whole eyecare team which suggest how more autism-friendly eye examinations can be provided.

Dataset Information

Autism in Australia: Community Knowledge and Autistic People's Experiences.

Publications

Autism in Australia: Community Knowledge and Autistic People's Experiences.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets