Department of Anaesthesia, Our Lady's Hospital, Navan, Meath, Ireland
Independent Researcher, Cork, Ireland.
BMJ Open. 2022 Feb 22;12(2):e056904. doi: 10.1136/bmjopen-2021-056904.
Autistic 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.
Following consultation with the autistic community at an autistic conference, , we developed a self-report survey, which we administered online through social media platforms.
A 52-item, international, online survey.
507 autistic adults and 157 non-autistic adults.
Self-reported barriers to accessing healthcare and associated adverse health outcomes.
Eighty 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.
Reduction 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.
与非自闭症患者相比，自闭症患者的身心健康状况较差，预期寿命也较短。我们的目的是确定自闭症成年人与非自闭症成年人相比，在获得初级保健方面自我报告的障碍，并将这些障碍与自我报告的不良健康后果联系起来。
在自闭症会议上与自闭症社区协商后，我们开发了一份自我报告调查，通过社交媒体平台在线进行。
一项包含 52 个项目的国际在线调查。
507 名自闭症成年人和 157 名非自闭症成年人。
自我报告的获得医疗保健的障碍和相关的不良健康后果。
80%的自闭症成年人和 37%的非自闭症受访者报告说难以看全科医生（GP）。自闭症成年人评分最高的障碍是决定症状是否需要看 GP（72%）、通过电话预约困难（62%）、不被理解（56%）、与医生沟通困难（53%）和候诊室环境（51%）。自闭症成年人表示更喜欢在线或基于文本的预约方式、提前发电子邮件预约原因的便利、第一个或最后一个诊所预约以及安静的等候区。自闭症成年人自我报告的不良健康后果与获得医疗保健的障碍有关。不良后果包括未经治疗的身体和心理健康状况、不参加专科转诊或筛查计划、由于就诊较晚而需要更广泛的治疗或手术以及未经治疗的潜在危及生命的状况。在就诊困难程度、经历的障碍或不良后果方面，正式诊断和自我认定的自闭症受访者之间没有显著差异。
减少自闭症患者的医疗保健不平等需要医疗保健提供者理解自闭症患者的观点、沟通需求和感官敏感性。对自闭症特定需求的调整与为轮椅使用者设置斜坡同等重要。
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