Autism-friendly eyecare: Developing recommendations for service providers based on the experiences of autistic adults.

PURPOSE: People 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. METHODS: Two 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. RESULTS: Knowledge 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. CONCLUSION: A 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.

Visual Sensory Experiences From the Viewpoint of Autistic Adults.

Although previous research has investigated altered sensory reactivity in autistic individuals, there has been no specific focus on visual sensory experiences, particularly in adults. Using qualitative methods, this study aimed to characterize autistic visual sensory symptoms, contextualize their impact and document any associated coping strategies. A total of 18 autistic adults took part in four focus groups which involved questions around visual experiences, the impact of these on daily life, and strategies for their reduction. Transcripts of each session were thematically analyzed allocating six key themes. Participants described a range of visual hypersensitivities, including to light, motion, patterns and particular colors, which contributed to distraction and were frequently part of a wider multisensory issue. Such experiences had significant negative impacts on personal wellbeing and daily life with participants describing fatigue, stress and hindrances on day-to-day activities (e.g., travel and social activities). However, the degree of understanding that participants had about their visual experiences influenced their emotional response, with greater understanding reducing concern. Participants employed a variety of coping strategies to overcome visual sensory experiences but with varied success. Discussions also highlighted that there may be a poor public understanding of sensory issues in autism affecting how well autistic individuals are able manage their sensory symptoms. In summary, autistic adults expressed significant concern about their visual experiences and there is a need to improve understanding of visual experiences on a personal and public level as well as for developing potential support.

Guidelines for conducting research studies with the autism community.

There has been growing awareness of the concern expressed by autism communities that the majority of research conducted does not reflect the priorities or needs of autistic people and their families. Further, many autistic people report that they feel unable to influence research and desire greater involvement in the research process. Our research generated practical guidelines for researchers to consider when conducting autism research, in order to increase involvement, collaboration and trust between researchers and the autism community. These guidelines are based on the output of focus groups and interview discussions with twenty-two autistic adults and eight parents of autistic children, conducted during a series of workshops carried out as a collaboration between the research network Autism@Manchester and Salfordautism, an autism support group led and run by autistic professionals. The guidelines are organised into four sections: (1) pre-study considerations, (2) recruitment of participants, (3) study visit considerations and (4) post-study considerations. These sections are structured to reflect the research pathway, to allow researchers to understand more easily how to incorporate the recommendations into their research. The recommendations promote effective communication and equal partnerships between the autism and research communities, so that the needs of participants pre-research, during and post- research are taken into account, and so that participants are supported to become involved in research at the level they choose. It is hoped that by implementing transparent and participatory approaches to their work, researchers might be able to reduce some of the dissatisfaction that members of the autism community feel towards research, leading to higher standards in autism research.