{"title":"‘Even the Way I Make My Coffee is Autistic’: Meaning of Autism in the Lives of Middle-Aged Women prior to and After their Diagnoses","authors":"Kremena Nikolova-Fontaine, Snæfríður Þóra Egilson","doi":"10.16993/sjdr.1003","DOIUrl":null,"url":null,"abstract":"The aim of this qualitative interview study was to shed light on the meaning and experiences of autism in the lives of middle-aged women, prior to and after their diagnosis. The study was informed by critical disability studies and critical autism studies. Six women who all had shared their experiences in an Icelandic documentary about autistic women participated. The Interpretative Phenomenological Analysis (IPA) was used in data analysis. In retrospect the women described painful experiences from their youth and their struggles with meeting the demands of typical social and work environments due to their autistic characteristics and inaccessible environments. Personal and environmental dimensions uniquely interacted to mediate the women’s exclusion in various situations. The women’s late diagnosis made them revise and rewrite their past, emphasizing environmental aspects instead of assuming personal blame for the hardship they had endured.","PeriodicalId":46073,"journal":{"name":"Scandinavian Journal of Disability Research","volume":"57 1","pages":"0"},"PeriodicalIF":1.7000,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Scandinavian Journal of Disability Research","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.16993/sjdr.1003","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"REHABILITATION","Score":null,"Total":0}
引用次数: 0
Abstract
The aim of this qualitative interview study was to shed light on the meaning and experiences of autism in the lives of middle-aged women, prior to and after their diagnosis. The study was informed by critical disability studies and critical autism studies. Six women who all had shared their experiences in an Icelandic documentary about autistic women participated. The Interpretative Phenomenological Analysis (IPA) was used in data analysis. In retrospect the women described painful experiences from their youth and their struggles with meeting the demands of typical social and work environments due to their autistic characteristics and inaccessible environments. Personal and environmental dimensions uniquely interacted to mediate the women’s exclusion in various situations. The women’s late diagnosis made them revise and rewrite their past, emphasizing environmental aspects instead of assuming personal blame for the hardship they had endured.