Sinéad Louise Mullally, Alice E Wood, Cherice Chantelle Edwards, Sophie E Connolly, Hannah Constable, Stuart Watson, Jacqui Rodgers, Kieran Rose, Nic King
{"title":"自闭症之声:分享自闭症儿童的经历和见解","authors":"Sinéad Louise Mullally, Alice E Wood, Cherice Chantelle Edwards, Sophie E Connolly, Hannah Constable, Stuart Watson, Jacqui Rodgers, Kieran Rose, Nic King","doi":"10.1101/2024.07.22.24310796","DOIUrl":null,"url":null,"abstract":"Autism research rarely amplifies the voices of autistic children. Here, we aim to counter this by collating and sharing the first-hand experiences and insights of autistic children. A total of 136 children (8-14 years of age) self-reported their experiences of being autistic via a semi-structured online questionnaire/video call. Both qualitative and quantitative data was gathered, and inductive thematic analysis used to analyse qualitative responses. Four core themes were identified: 'Safety and Security', 'Conformity, Fitting in and Masking', 'Identity', and 'Sensory Sensitivity'. The initial theme of safety and security permeated the children's narratives and overwhelmingly, the children spoke of the need for them to be alert to who in their lives is a safe person and who is not. They were also highly attuned to whether specific places are safe for them, as past experiences appear to have taught them that their safety in everyday places cannot be assumed. Teachers, health and social care professionals, and neurotypical peers were frequently singled out as unsafe people and school as an unsafe place, whilst parents, home, and autistic peers were often referred to as safe. This distinction was also evident in the statistical analysis of the quantitative data, whereby autistic children were significantly more likely to report that it is okay for them to be autistic at home, relative to when they are at school or with their friends/peers. Judging a person as safe was closely linked to that persons' understanding of the child and of their autistic experiences, and understanding was important in establishing trust. When trust was established, it appeared possible for trusted people to facilitate a sense of safety for the children even within otherwise unsafe places. A sense of belonging within autistic/neurodivergent communities was positively linked to the core theme of safety and security and to having a positive autistic identity, whilst masking and sensory distress were linked to feeling unsafe and insecure. These first-hand accounts provide valuable insights into autistic children's lives and demand that we urgently explore how places outside of the family home (including places of education) can be transformed into safe spaces for autistic children.","PeriodicalId":501388,"journal":{"name":"medRxiv - Psychiatry and Clinical Psychology","volume":"57 1","pages":""},"PeriodicalIF":0.0000,"publicationDate":"2024-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Autistic voice: Sharing autistic children's experiences and insights\",\"authors\":\"Sinéad Louise Mullally, Alice E Wood, Cherice Chantelle Edwards, Sophie E Connolly, Hannah Constable, Stuart Watson, Jacqui Rodgers, Kieran Rose, Nic King\",\"doi\":\"10.1101/2024.07.22.24310796\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"Autism research rarely amplifies the voices of autistic children. Here, we aim to counter this by collating and sharing the first-hand experiences and insights of autistic children. A total of 136 children (8-14 years of age) self-reported their experiences of being autistic via a semi-structured online questionnaire/video call. Both qualitative and quantitative data was gathered, and inductive thematic analysis used to analyse qualitative responses. Four core themes were identified: 'Safety and Security', 'Conformity, Fitting in and Masking', 'Identity', and 'Sensory Sensitivity'. The initial theme of safety and security permeated the children's narratives and overwhelmingly, the children spoke of the need for them to be alert to who in their lives is a safe person and who is not. They were also highly attuned to whether specific places are safe for them, as past experiences appear to have taught them that their safety in everyday places cannot be assumed. Teachers, health and social care professionals, and neurotypical peers were frequently singled out as unsafe people and school as an unsafe place, whilst parents, home, and autistic peers were often referred to as safe. This distinction was also evident in the statistical analysis of the quantitative data, whereby autistic children were significantly more likely to report that it is okay for them to be autistic at home, relative to when they are at school or with their friends/peers. Judging a person as safe was closely linked to that persons' understanding of the child and of their autistic experiences, and understanding was important in establishing trust. When trust was established, it appeared possible for trusted people to facilitate a sense of safety for the children even within otherwise unsafe places. A sense of belonging within autistic/neurodivergent communities was positively linked to the core theme of safety and security and to having a positive autistic identity, whilst masking and sensory distress were linked to feeling unsafe and insecure. These first-hand accounts provide valuable insights into autistic children's lives and demand that we urgently explore how places outside of the family home (including places of education) can be transformed into safe spaces for autistic children.\",\"PeriodicalId\":501388,\"journal\":{\"name\":\"medRxiv - Psychiatry and Clinical Psychology\",\"volume\":\"57 1\",\"pages\":\"\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2024-07-24\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"medRxiv - Psychiatry and Clinical Psychology\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1101/2024.07.22.24310796\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"medRxiv - Psychiatry and Clinical Psychology","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1101/2024.07.22.24310796","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
Autistic voice: Sharing autistic children's experiences and insights
Autism research rarely amplifies the voices of autistic children. Here, we aim to counter this by collating and sharing the first-hand experiences and insights of autistic children. A total of 136 children (8-14 years of age) self-reported their experiences of being autistic via a semi-structured online questionnaire/video call. Both qualitative and quantitative data was gathered, and inductive thematic analysis used to analyse qualitative responses. Four core themes were identified: 'Safety and Security', 'Conformity, Fitting in and Masking', 'Identity', and 'Sensory Sensitivity'. The initial theme of safety and security permeated the children's narratives and overwhelmingly, the children spoke of the need for them to be alert to who in their lives is a safe person and who is not. They were also highly attuned to whether specific places are safe for them, as past experiences appear to have taught them that their safety in everyday places cannot be assumed. Teachers, health and social care professionals, and neurotypical peers were frequently singled out as unsafe people and school as an unsafe place, whilst parents, home, and autistic peers were often referred to as safe. This distinction was also evident in the statistical analysis of the quantitative data, whereby autistic children were significantly more likely to report that it is okay for them to be autistic at home, relative to when they are at school or with their friends/peers. Judging a person as safe was closely linked to that persons' understanding of the child and of their autistic experiences, and understanding was important in establishing trust. When trust was established, it appeared possible for trusted people to facilitate a sense of safety for the children even within otherwise unsafe places. A sense of belonging within autistic/neurodivergent communities was positively linked to the core theme of safety and security and to having a positive autistic identity, whilst masking and sensory distress were linked to feeling unsafe and insecure. These first-hand accounts provide valuable insights into autistic children's lives and demand that we urgently explore how places outside of the family home (including places of education) can be transformed into safe spaces for autistic children.