Autism in adulthood : challenges and management最新文献

{"title":"Measuring the Wrong Thing the Right Way? Time to Rethink Autism Research Tools.","authors":"Sandra C Jones","doi":"10.1089/aut.2021.0050","DOIUrl":"10.1089/aut.2021.0050","url":null,"abstract":"<p><p>Awareness and understanding of autism are increasing, sometimes in small incremental steps and sometimes through paradigm shifts. Much of this is driven by autistic advocates, whose voices are increasingly recognized as experts in their own lived experiences. The growing presence of autistic people in autism research-as participants, advisors, and (co)researchers-has brought about changes in the quality and relevance of autism research. We are seeing more studies by autistic autism researchers, more studies on issues of importance to autistic people, and more studies utilizing methodologies that resonate with autistic people. However, there remains a reliance on measures that are technically \"valid\" and \"reliable\" rather than relevant. As long as this is the case, we will continue to see studies published that \"explain autism\" in ways that do not reflect autistic experiences. Autism research is still making incremental changes and it is time for a paradigm shift.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 2","pages":"104-109"},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9645667/pdf/aut.2021.0050.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9556284","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Response to Rose and Michael; doi: 10.1089/aut.2022.0023.","authors":"David Mason, Gavin Stewart, Simone Capp, Francesca Happé","doi":"10.1089/aut.2022.0033","DOIUrl":"10.1089/aut.2022.0033","url":null,"abstract":"","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 2","pages":"176"},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9907860/pdf/aut.2022.0033.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9550358","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"<i>Correction to:</i> Advancing the Personalization of Assessment and Intervention in Autistic Adolescents and Young Adults by Targeting Self-Determination and Executive Processes by Shogren, et al. <i>Autism Adulthood</i> 2021;3(4):289-299; doi: 10.1089/aut.2021.0010.","authors":"","doi":"10.1089/aut.2021.0010.correx","DOIUrl":"https://doi.org/10.1089/aut.2021.0010.correx","url":null,"abstract":"<p><p>[This corrects the article DOI: 10.1089/aut.2021.0010.].</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 2","pages":"177"},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9907858/pdf/aut.2021.0010.correx.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10695754","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Re: Older Age Autism Research: A Rapidly Growing Field, but Still a Long Way to Go by Mason et al.; DOI: 10.1089/aut.2021.0041 (<i>Previously titled:</i> The Rising Tide of \"Gerontautism\").","authors":"Kieran Rose,&nbsp;Cos Michael","doi":"10.1089/aut.2022.0023","DOIUrl":"https://doi.org/10.1089/aut.2022.0023","url":null,"abstract":"","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 2","pages":"173-175"},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9907862/pdf/aut.2022.0023.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9556749","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Show Me the Real You: Enhanced Expression of Rogerian Conditions in Therapeutic Relationship Building with Autistic Adults.","authors":"Romy Hume","doi":"10.1089/aut.2021.0065","DOIUrl":"10.1089/aut.2021.0065","url":null,"abstract":"<p><strong>Background: </strong>Research in psychotherapy and counseling theory has shown the importance of a strong therapeutic relationship. However, in the context of working with autistic adults, the relationship appears to be de-emphasized, or \"different approaches\" are recommended without specifying these. Neglect of relationship building may contribute to autistic adults' negative experiences with health care professionals identified in previous studies.</p><p><strong>Methods: </strong>I interviewed 17 autistic adults about their relationship building experiences with a wide range of professionals primarily from mental and medical health backgrounds. I also interviewed two mental health counselors and one psychologist who had experience working with this client group and had been recommended by autistic participants. I elicited best practice recommendations from all participants. I analyzed the data in an interpretive-interactionist framework and present them through creative analytic practice.</p><p><strong>Findings: </strong>I address one major theme in this article: the importance of Rogerian/person-centered relationship conditions. All had to be practiced in an enhanced way: (1) Enhanced congruence could be demonstrated through therapist self-disclosure and refraining from phony relationship building \"techniques\" such as vocal adjustments. (2) Enhanced empathy could be demonstrated through genuine listening and accurate interpretation; however, interpretation needed to be phrased tentatively. (3) Enhanced unconditional positive regard could be demonstrated through explicit verbal expression, practical demonstration, and remembering.</p><p><strong>Conclusions: </strong>Results largely mirrored research with non-autistic populations: different approaches were not needed for relationship building. Participants emphasized the importance of Rogers' person-centered conditions and described pivotal relationship building moments associated with enhanced expression of these conditions.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 2","pages":"151-163"},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9645675/pdf/aut.2021.0065.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9561899","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"I Knew She'd Get It, and Get Me\": Participants' Perspectives of a Participatory Autism Research Project.","authors":"Elizabeth Pellicano, Wenn Lawson, Gabrielle Hall, Joanne Mahony, Rozanna Lilley, Melanie Heyworth, Hayley Clapham, Michael Yudell","doi":"10.1089/aut.2021.0039","DOIUrl":"10.1089/aut.2021.0039","url":null,"abstract":"<p><strong>Introduction: </strong>Autistic advocates and their supporters have long argued that conventional research practices provide too few opportunities for genuine engagement with autistic people, contributing to social disenfranchisement among autistic people. We recently described one attempt to develop and implement a participatory study in which a team of autistic and nonautistic researchers worked together to gather life histories from late-diagnosed autistic people. In the current study, we sought to understand the impact of this participatory approach on the participants themselves.</p><p><strong>Methods: </strong>We spoke to 25 Australian late-diagnosed autistic adults (aged 45-72 years), who had been interviewed by an autistic researcher using an oral history approach. We asked them about their experience of being involved in that project and the research process more broadly. We thematically analyzed participants' interviews.</p><p><strong>Results: </strong>Participants responded overwhelmingly positively to the opportunity to tell their life history, considering it illuminating and empowering. While recounting their life history was often described as \"exhausting\" and \"draining,\" participants also reported feeling \"supported all the way\" and agreed \"it was made easier because I had an autistic researcher interviewing me.\" One participant went so far as to say that they \"probably would have dropped out [of the project] if it was run by people who weren't autistic.\"</p><p><strong>Conclusions: </strong>These findings demonstrate that the benefits of coproduction to researchers and community partners extend to study participants and to the quality of the research itself. Involving autistic partners in the research process, especially in its implementation, can play a crucial role in enhancing autism research.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 2","pages":"120-129"},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9645671/pdf/aut.2021.0039.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9561902","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring the Experience of Seeking an Autism Diagnosis as an Adult.","authors":"Matthew de Broize, Kiah Evans, Andrew J O Whitehouse, John Wray, Valsamma Eapen, Anna Urbanowicz","doi":"10.1089/aut.2021.0028","DOIUrl":"10.1089/aut.2021.0028","url":null,"abstract":"<p><strong>Background: </strong>Emerging research suggests that seeking an autism diagnosis as an adult is usually difficult and time-consuming but brings relief once a diagnosis is made. This study explored the experience of the pathway to an autism diagnosis during adulthood for adults living in Australia.</p><p><strong>Methods: </strong>We conducted a qualitative phenomenological study and interviewed 13 adults who identified as autistic about their pathway to autism diagnosis in their mode of choice. Spoken interviews were transcribed verbatim, and transcripts were analyzed by using a thematic approach.</p><p><strong>Results: </strong>Data analysis resulted in 6 themes and 20 meaning units that described the experiences of adults seeking an autism diagnosis in Australia. These themes involved two interwoven journeys that spanned before, during, and after the diagnostic process. The personal journey involved feeling different, considering autism, and living as autistic, whereas the clinical journey involved missed opportunities, varied diagnostic experiences, and absent supports.</p><p><strong>Conclusions: </strong>Given the potential benefits for adults obtaining a formal autism diagnosis and accessing post-diagnostic supports, it is important that health professionals and governments collaborate to reduce access barriers and ensure adequate services are available. The findings from this study informed the development of Australia's national guideline for autism diagnosis.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 2","pages":"130-140"},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9645668/pdf/aut.2021.0028.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9561897","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Acknowledgment of Reviewers 2021.","authors":"","doi":"10.1089/aut.2021.29020.ack","DOIUrl":"https://doi.org/10.1089/aut.2021.29020.ack","url":null,"abstract":"","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 1","pages":"92"},"PeriodicalIF":0.0,"publicationDate":"2022-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8992912/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10488579","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Autistic Adolescents' and Their Parents' Visions for the Future: How Aligned are They?","authors":"Anne V Kirby,&nbsp;Marissa L Diener,&nbsp;Evan E Dean,&nbsp;Amber Nowell Darlington,&nbsp;Alyssa Myers,&nbsp;Jarrett Henderson","doi":"10.1089/aut.2020.0061","DOIUrl":"https://doi.org/10.1089/aut.2020.0061","url":null,"abstract":"<p><strong>Introduction: </strong>The expectations individuals hold about the future can influence the decisions they make toward achieving their goals. Existing research suggests parents of autistic adolescents hold expectations about the future that are significantly related to the postsecondary outcomes they achieve. However, less research exists about the adolescents' own expectations and the extent to which autistic adolescents and their parents agree about the future.</p><p><strong>Methods: </strong>We used a scoring procedure to \"quantitize\" semi-structured interview data about what 46 adolescent-parent dyads envisioned for the future of the autistic adolescent across three areas of adulthood (postsecondary education, employment, and living situation). Adolescents ranged in age from 13-19 years (85.1% male) and were able to participate in a verbal interview. We scored the dyads' interviews on the extent to which they agreed or disagreed about the postsecondary future of the adolescent, as well as whose expectations were higher (when they differed).</p><p><strong>Results: </strong>Proportions of agreement and disagreement did not significantly differ, demonstrating moderate agreement. Notably, fewer than half (37.0-47.8%) of adolescents and their parents partly or strongly agreed about their visions for the future in each of the three areas. Only 17.4% of dyads partly or strongly agreed across all three areas, and 23.9% did not agree in any area. When adolescents' and parents' views differed, adolescents were significantly more likely to have a higher expectation across all three areas (<i>p</i>s < 0.01).</p><p><strong>Conclusions: </strong>Future research is needed to examine differences in autistic adolescents' and parents' visions of the future, and to explore interventions to support families to work toward shared goals for the future. This study contributes to a growing body of literature emphasizing the importance of including the perspectives of autistic adolescents in research and for them to have an active and substantial role in their own transition planning.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 1","pages":"32-41"},"PeriodicalIF":0.0,"publicationDate":"2022-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8992901/pdf/aut.2020.0061.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10814009","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding Stigma in Autism: A Narrative Review and Theoretical Model.","authors":"Alice Turnock, Kate Langley, Catherine R G Jones","doi":"10.1089/aut.2021.0005","DOIUrl":"10.1089/aut.2021.0005","url":null,"abstract":"<p><p>The experience of stigma by autistic people is relatively understudied, despite contributing to a range of poor outcomes and having an overarching impact on well-being. The current review of the literature synthesizes research to determine what is currently known and presents a theoretical model of autism stigma. Autism stigma is primarily influenced by a public and professional understanding of autism in combination with interpretation of visible autistic traits. Moderating factors include the quality and quantity of contact with autistic people, cultural factors, sex and gender, individual differences, and diagnostic disclosure. Stigma can reduce well-being as well as increase the presence of camouflaging behaviors, which mask autistic traits. Caregivers of autistic people can experience stigma by association, that is, affiliate stigma, which can impact their own well-being. A variety of interventions and approaches to reduce stigma are discussed, including \"autism friendly\" spaces, positive media representation, educational and psychosocial training for the public and professionals, as well as cultural and systemic shifts that foster inclusivity and recognize neurodiversity.</p>","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"4 1","pages":"76-91"},"PeriodicalIF":0.0,"publicationDate":"2022-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8992913/pdf/aut.2021.0005.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10816089","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}