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.
This article explores the experiences of U.K. medical students with dyslexia, using an interpretive phenomenological approach. This project began with a review of the literature, highlighting a void of qualitative research. We then conducted a collaborative autoethnography. This paper forms the next stage in this series of research. We aimed to elicit meaning and understanding from the lived experiences of our participants. Eight U.K. junior doctors with dyslexia were interviewed over the telephone in an in-depth, unstructured manner. Audio recordings were transcribed verbatim and thematically analysed with the aid of a template analysis. Experiences of helplessness and hopelessness were common. These may be a result of a fear of stigmatization and personal feelings of inadequacy. They may also be fuelled by the incidents of bullying and belittling from other medical students that were reported. An important meta-theme was of fear and lack of understanding. A lack of pastoral support was also reported. Their experiences of medical school assessments are also reported. More may need to be done to educate teachers and clinical supervisors on dyslexia.
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