de Visser Richard O, Mosely Rachel, Gamble-Turner Julie, Hull Laura, Sedgewick Felicity, Featherstone Charlotte, Quint Obe Chella, Freeman Eloise, Karavidas Marianna
Brighton and Sussex Medical School, UK.
Bournemouth University, UK.
Autism. 2025 Apr;29(4):934-944. doi: 10.1177/13623613241290628. Epub 2024 Oct 15.
Autism can make menstruation and menopause and other aspects of reproductive and sexual health (RSH) more difficult. However, healthcare professionals (HCPs) often fail to provide autism-aware care, and often lack the skills or confidence to discuss RSH with patients. This study explored whether autistic people experience particular difficulties and have unmet needs when seeking RSH care. Online surveys consisting of forced-choice items and free-text boxes were completed by 136 autistic adults in the United Kingdom. Quantitative data were analysed using standard parametric and non-parametric tests. Qualitative data underwent thematic analysis. The data provide a clear picture of unmet needs for autism-aware healthcare for RSH. The quantitative data and qualitative analysis revealed that respondents felt: (a) uncomfortable discussing menstrual issues, menopause and sexual wellbeing; (b) that HCPs rarely accommodate their sensory needs and communication preferences; and (c) that HCPs rarely demonstrated awareness of how autism can affect RSH. This novel study highlighted widespread unmet needs for appropriate RSH care for autistic people. Effort is required to enhance HCPs' ability to provide autism-aware care for RSH. The findings could inform the development of resources and training to improve healthcare for autistic people.Lay abstractAutistic people often experience difficulties with healthcare, and are more likely than neurotypical people to have unmet healthcare needs. They may also be more likely to find menstruation and menopause more difficult than neurotypical women. Healthcare professionals (HCPs) often have insufficient training and support to work with autistic adults, and they often lack the skills or confidence to discuss reproductive and sexual health (RSH) with patients. When these two issues are combined, it would appear that autistic people may experience particular difficulties when seeking RSH care. The aim of this study was to explore autistic people's experiences of healthcare related to RSH in the United Kingdom. Surveys were distributed with assistance of an autism charity, and were completed by 136 adults. The survey consisted mainly of tick-box responses, but there were also several opportunities for participants to write comments about their experiences. Respondents felt that HCPs almost never seem to know how autism affects their RSH. There was broad agreement that HCPs need to be more aware of the impact of autism on healthcare experiences in general, and the specific impacts of autism on RSH. The data provide a clear picture of unmet needs for autism-aware healthcare for RSH, but further research is required to explore HCPs' knowledge about how autism affects RSH. Combined with our findings, such research could inform the development of resources and training to improve healthcare for autistic people.
自闭症会使月经、更年期以及生殖与性健康(RSH)的其他方面变得更加棘手。然而,医疗保健专业人员(HCPs)往往未能提供对自闭症有充分认识的护理,而且常常缺乏与患者讨论RSH的技能或信心。本研究探讨了自闭症患者在寻求RSH护理时是否会遇到特殊困难以及存在未满足的需求。英国136名成年自闭症患者完成了由多项选择题和自由文本框组成的在线调查。定量数据采用标准参数检验和非参数检验进行分析。定性数据进行了主题分析。这些数据清晰地呈现了针对RSH的自闭症意识医疗保健方面未满足的需求。定量数据和定性分析表明,受访者感到:(a)在讨论月经问题、更年期和性健康方面感到不自在;(b)HCPs很少能满足他们的感官需求和沟通偏好;(c)HCPs很少表现出对自闭症如何影响RSH的认识。这项新颖的研究突出了自闭症患者在适当的RSH护理方面广泛存在的未满足需求。需要努力提高HCPs提供针对RSH的自闭症意识护理的能力。这些发现可为改善自闭症患者医疗保健的资源开发和培训提供参考。
自闭症患者在医疗保健方面常常遇到困难,比神经典型人群更有可能存在未满足的医疗需求。他们可能也比神经典型女性更易觉得月经和更年期更具挑战性。医疗保健专业人员(HCPs)在与成年自闭症患者合作时往往缺乏足够的培训和支持,并且常常缺乏与患者讨论生殖与性健康(RSH)的技能或信心。当这两个问题结合起来时,自闭症患者在寻求RSH护理时似乎可能会遇到特殊困难。本研究的目的是探讨英国自闭症患者在与RSH相关的医疗保健方面的经历。调查在一家自闭症慈善机构的协助下进行分发,由136名成年人完成。该调查主要由打勾式回答组成,但也有几次机会让参与者写下他们的经历评论。受访者觉得HCPs似乎几乎从不了解自闭症如何影响他们的RSH。人们普遍认为,HCPs总体上需要更加了解自闭症对医疗保健经历的影响,以及自闭症对RSH的具体影响。这些数据清晰地呈现了针对RSH的自闭症意识医疗保健方面未满足的需求,但需要进一步研究以探讨HCPs关于自闭症如何影响RSH的知识。结合我们的研究结果,此类研究可为改善自闭症患者医疗保健的资源开发和培训提供参考。