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Article ; Online: "Simultaneously Vague and Oddly Specific": Understanding Autistic People's Experiences of Decision Making and Research Questionnaires.

Stacey, Rachael / Cage, Eilidh

Autism in adulthood : challenges and management

2023 Volume 5, Issue 3, Page(s) 263–274

Abstract: Background: Autism researchers often use questionnaires to gather the views and experiences of autistic people. However, questionnaires may not always be designed in accessible ways. In addition, answering questions within a questionnaire involves ... ...

Abstract	Background: Autism researchers often use questionnaires to gather the views and experiences of autistic people. However, questionnaires may not always be designed in accessible ways. In addition, answering questions within a questionnaire involves decision making, which some autistic people have reported finding difficult. Therefore, this exploratory study aimed to enhance our understanding of autistic people's experiences of decision making, and to analyze their feedback on questionnaire measures to further understand decision making within the research context. Methods: One hundred seventeen participants completed an online questionnaire. In the questionnaire, they answered an open question about what affected their ability to make decisions. They then completed four questionnaire measures and after each one provided feedback. We used content analysis to categorize participants' qualitative answers. Results: Participants discussed how their internal state, other people, the quality and quantity of information, pressure on choosing a response, external distractions, and lack of time all affected their decision making. Feedback on the questionnaires highlighted how questions needed context, often questions themselves were unclear and difficult to understand, that there were issues with Likert scales, and how measures could have questionable validity for autistic people. Conclusions: Autism researchers need to consider how they can make their research as accessible as possible for autistic people. Our study highlights how decision making is not a straight-forward process, and researchers have a role in ensuring they give their participants clear and contextualized information. Involving autistic people in the design of research is a potential way of improving the quality of research.
Language	English
Publishing date	2023-08-30
Publishing country	United States
Document type	Journal Article
ISSN	2573-959X
ISSN (online)	2573-959X
DOI	10.1089/aut.2022.0039
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article: "Autism research is in crisis": A mixed method study of researcher's constructions of autistic people and autism research.

Botha, Monique / Cage, Eilidh

Frontiers in psychology

2022 Volume 13, Page(s) 1050897

Abstract: Introduction: While not all autism research is ableism, autism researchers can be ableist, including by talking about autistic people in sub-human terms (dehumanization), treating autistic people like objects (objectification), and making othering ... ...

Abstract	Introduction: While not all autism research is ableism, autism researchers can be ableist, including by talking about autistic people in sub-human terms (dehumanization), treating autistic people like objects (objectification), and making othering statements which set autistic people apart from non-autistic people, Method: This mixed-method study aimed to investigate how autism researchers construct autistic people and autism research, and to investigate whether including autistic people more in research relates to lower ableism in narratives about autistic people. We used a survey with autism researchers ( Results and discussion: Using medicalized narratives of autism predicted higher odds of ableist cues compared to employing social model or neutral embodiment narratives. Greater inclusion of autistic people in research predicted significantly lower odds of ableist cues, while controlling for other contact with autistic people and career length. Next, we used reflexive thematic analysis to analyze researcher's perceptions of autistic people and autism research. Narratives reflected core ideological disagreements of the field, such as whether researchers consider autism to be an intrinsic barrier to a good life, and whether researchers prioritize research which tackles "autism" versus barriers to societal inclusion for autistic people. Instrumentality (a form of objectification) was key to whether researchers considered a person to have social value with emphasis revolving around intellectual ability and independence. Lastly, language seemed to act as a tool of normalization of violence. Researchers relied on an amorphous idea of "autism" when talking about prevention or eradication, potentially because it sounds more palatable than talking about preventing "autistic people," despite autism only existing within the context of autistic people.
Language	English
Publishing date	2022-11-24
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2563826-9
ISSN	1664-1078
ISSN	1664-1078
DOI	10.3389/fpsyg.2022.1050897
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Article: Burnt Out and Dropping Out: A Comparison of the Experiences of Autistic and Non-autistic Students During the COVID-19 Pandemic.

Cage, Eilidh / McManemy, Ellie

Frontiers in psychology

2022 Volume 12, Page(s) 792945

Abstract: Autistic students are more likely to drop out of university, while facing both challenges and opportunities within university environments. This study compared the experiences of autistic and non-autistic current United Kingdom students, in terms of ... ...

Abstract	Autistic students are more likely to drop out of university, while facing both challenges and opportunities within university environments. This study compared the experiences of autistic and non-autistic current United Kingdom students, in terms of thoughts about dropping out, burnout, mental health and coping, during the COVID-19 pandemic. Burnout was of particular interest as this is a relatively unexamined phenomenon for autistic students. Seventy autistic and 315 non-autistic students, completed a mixed methods questionnaire with standardized measures of burnout (personal and academic), mental health (depression, stress, and anxiety), and coping styles (adaptive and maladaptive). We also included qualitative questions about dropping out and COVID-19 experiences. We found autistic participants experienced higher rates of burnout and mental health symptoms and were more likely to have thought about dropping out. Reasons given for thinking about dropping out, for both groups, focused on poor mental well-being, doubts about university, and academic challenges. For autistic participants, further analyses did not identify specific predictors of thinking about dropping out, but for non-autistic participants, this was predicted by maladaptive coping styles and academic burnout. Academic and personal burnout predicted one another for autistic students, and age, maladaptive coping, autistic characteristics, stress, and anxiety additionally predicted burnout for non-autistic students. Similarities in experiences during the pandemic were noted, with both groups experiencing negative social implications, difficulties adjusting to emergency online learning, and poorer psychological well-being. Moving forward from COVID-19, universities must find ways to enhance both academic and social support, to enable equal opportunity within Higher Education for autistic students.
Language	English
Publishing date	2022-01-03
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2563826-9
ISSN	1664-1078
ISSN	1664-1078
DOI	10.3389/fpsyg.2021.792945
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Article ; Online: "

McAuliffe, Christine / Walsh, Reubs J / Cage, Eilidh

Autism in adulthood : challenges and management

2023 Volume 5, Issue 2, Page(s) 127–138

Abstract: Background: Being nonheterosexual and noncisgender appears to be more common among autistic people. This intersection of identities is often stigmatized in research and society. However, we know that community involvement can protect against negative ... ...

Abstract	Background: Being nonheterosexual and noncisgender appears to be more common among autistic people. This intersection of identities is often stigmatized in research and society. However, we know that community involvement can protect against negative mental health outcomes associated with being a minority; researchers found this effect in separate studies examining participation in the autistic and Lesbian, Gay, Bisexual, Trans, Queer, Intersex, Asexual plus other gender and sexual orientation-based identity (LGBTQIA+) communities. This study examined how autistic LGBTQIA+ individuals navigate their multiple marginalized identities and the LGBTQIA+ community. Methods: Twelve autistic LGBTQIA+ people from the United Kingdom took part in semistructured interviews. Questions focused on identity and community. We analyzed the interviews using reflexive thematic analysis. Results: We identified four overarching themes-Identity (Re)Development, Navigating Authenticity, Exclusion from Community Spaces, and Creating Change. Participants viewed accessing a community of similar others as a means of increasing understanding, self-knowledge, and self-acceptance. We identified several barriers to inclusion, including accessibility and gatekeeping. Participants discussed strategies to combat these obstacles, such as the creation of intersectional community spaces and activism and representation as a means of increasing autism understanding. Conclusions: This study suggests that similar to other marginalized groups, autistic LGBTQIA+ individuals are motivated to engage in communities relevant to their identities. However, community spaces for autistic LGBTQIA+ are often inaccessible due to social, sensory, and identity-based barriers. Participants highlighted autism understanding as a barrier to coming out both in community and noncommunity settings. This suggests that improving autism acceptance and understanding is crucial to achieve accessible, intersectional, and inclusive community spaces.
Language	English
Publishing date	2023-06-13
Publishing country	United States
Document type	Journal Article
ISSN	2573-959X
ISSN (online)	2573-959X
DOI	10.1089/aut.2021.0074
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Article: Supporting Effective Transitions From University to Post-graduation for Autistic Students.

Lucas, Rebecca / Cage, Eilidh / James, Alana I

Frontiers in psychology

2022 Volume 12, Page(s) 768429

Abstract: Background: The number of autistic students graduating is increasing; however, little is known regarding their transition out of university. Understanding this transition is particularly pertinent with regard to the employment of autistic graduates. It ... ...

Abstract	Background: The number of autistic students graduating is increasing; however, little is known regarding their transition out of university. Understanding this transition is particularly pertinent with regard to the employment of autistic graduates. It is vital that we understand autistic people's experiences of the transition and identify what support would be beneficial during this time. Method: Thirty-four autistic graduates from the United Kingdom took part in a mixed-methods study exploring their transition experience. Both quantitative and qualitative questions were used to obtain in-depth information concerning participants' experiences. Participants completed questions regarding their experiences and emotions in relation to the transition, the support they received for the transition, and their career and post-graduation plans. Results: Participants reported high levels of fear and low preparedness for the transition. They did not feel well supported in preparing for the transition or for their future career. In the 6 months pre-graduation, 59% of participants had accessed emotion-related transition support and 70% accessed career-related support. Post-graduation, one-third accessed emotion-related or career-related support. Perspectives on this accessed support were mixed, as were transition experiences. Additional support desired included preparation for life changes, career planning, employment accessibility, and autism-specific support. Advice for future students centered on forward planning. Conclusion: These results highlight the importance of supporting autistic students with the transition out of university. Service provision should be tailored to autistic students' needs and support early planning for the transition.
Language	English
Publishing date	2022-02-07
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2563826-9
ISSN	1664-1078
ISSN	1664-1078
DOI	10.3389/fpsyg.2021.768429
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Concealing Stuttering at School: "When You Can't Fix It…the Only Alternative Is to Hide It".

Gerlach-Houck, Hope / Kubart, Kristel / Cage, Eilidh

Language, speech, and hearing services in schools

2022 Volume 54, Issue 1, Page(s) 96–113

Abstract: Purpose: The purpose of this study was to explore experiences with concealing stuttering in children and young people who stutter based on recollections from adults. In addition, we explored how school-based speech therapists can be helpful or unhelpful ...

Abstract	Purpose: The purpose of this study was to explore experiences with concealing stuttering in children and young people who stutter based on recollections from adults. In addition, we explored how school-based speech therapists can be helpful or unhelpful to children who are concealing stuttering from the perspective of adults who stutter. Method: Thirty adults who stutter, who previously or currently conceal stuttering, participated in semistructured interviews exploring their early experiences with hiding stuttering. Purposeful and random sampling was used to diversify experiences and opinions. Reflexive thematic analysis was used to develop themes and subthemes to describe participants' experiences. Results: All participants in the study reported beginning to conceal stuttering at 18 years of age or younger, with more than two thirds sharing that they began in elementary school. Participants reported that exposure to implicit and explicit ableist messaging about stuttering and traumatic social experiences at school contributed to their inclination to hide disfluencies. Many participants described concealment as a strategy for protecting themselves from stigma. Several participants condemned fluency shaping, calling it harmful and likening it to teaching concealment. Participants believed that speech therapists could be helpful by promoting safe and supportive school environments and by being responsive to the social and emotional challenges that can accompany speaking differently and navigating stigma at school. Conclusions: Some children who stutter may attempt to protect themselves from stigma by concealing their disfluencies, but doing so can feel isolating and confusing. Speech therapists can play an important role in making the school environment safer and more supportive for children who stutter.
MeSH term(s)	Adult ; Child ; Humans ; Adolescent ; Stuttering/therapy ; Stuttering/psychology ; Emotions ; Social Stigma ; Schools ; Speech
Language	English
Publishing date	2022-11-03
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2067619-0
ISSN	1558-9129 ; 0161-1461
ISSN (online)	1558-9129
ISSN	0161-1461
DOI	10.1044/2022_LSHSS-22-00029
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Article ; Online: Brief Report: Does Autistic Community Connectedness Moderate the Relationship Between Masking and Wellbeing?

Cage, Eilidh / Cranney, Rebekah / Botha, Monique

Autism in adulthood : challenges and management

2022 Volume 4, Issue 3, Page(s) 247–253

Abstract: Background: Masking involves blending in or covering a stigmatized identity, to avoid discrimination and to "pass" within society. Autistic people often report masking, both intentionally and unintentionally, to get by in social situations. Autistic ... ...

Abstract	Background: Masking involves blending in or covering a stigmatized identity, to avoid discrimination and to "pass" within society. Autistic people often report masking, both intentionally and unintentionally, to get by in social situations. Autistic people who report high rates of masking also tend to experience poorer mental health. It is important we understand whether there are variables that can protect against the negative effects of masking. One such potential variable is autistic community connectedness (ACC)-being part of and belonging to the autistic community. Past research suggests there are benefits for autistic people socially connecting with other autistic people. We investigated whether ACC could moderate the relationship between masking and wellbeing. Methods: One hundred ninety-six autistic people completed an online survey including measures of ACC, masking, and mental wellbeing. We used moderation analysis to test whether ACC acted as a buffer between masking and wellbeing. Results: Higher self-reported masking related to poorer mental wellbeing. Higher ACC related to more positive wellbeing. Higher ACC correlated with more masking. However, there was no interaction effect, and ACC did not moderate the relationship between masking and wellbeing. Conclusions: Although ACC did relate to more positive mental wellbeing overall, it did not moderate the negative relationship between masking and wellbeing. If masking relates to the prejudice faced by autistic people, those with greater attachment to the autistic community may also be more aware of discrimination against their community. Furthermore, autistic people who are more connected might experience a higher salience of masking when moving between autistic and nonautistic settings. Tackling prejudice toward autistic people is critical in helping to reduce the negative effects associated with masking, and we must endeavor to change perceptions and increase inclusion of autistic people.
Language	English
Publishing date	2022-08-31
Publishing country	United States
Document type	Journal Article
ISSN	2573-959X
ISSN (online)	2573-959X
DOI	10.1089/aut.2021.0096
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Dropping out and moving on: A qualitative study of autistic people's experiences of university.

Cage, Eilidh / Howes, Jack

Autism : the international journal of research and practice

2020 Volume 24, Issue 7, Page(s) 1664–1675

Abstract: Lay abstract: Many autistic people now go to university, but many of them also drop out of their studies. In fact, it is believed that autistic people are at higher risk of dropping out, but little research has been done to understand why this is ... ...

Abstract	Lay abstract: Many autistic people now go to university, but many of them also drop out of their studies. In fact, it is believed that autistic people are at higher risk of dropping out, but little research has been done to understand why this is happening. This research used interviews to take an in-depth look at 14 autistic people's experiences of dropping out of university. All the things the participants talked about were examined closely by the researchers who identified common themes in what the participants discussed. The first set of themes captured some overarching issues faced by autistic people, such as difficulties with getting diagnosed, a lack of autism understanding, mental health challenges and feeling like an outsider. The next themes were organised within challenges faced at university, including a feeling of culture shock, becoming disengaged from one's studies, a lack of proactive support from their university and a feeling that dropping out became inevitable. Finally, there were themes about life after dropping out, which involved a sense that the experience at university had been traumatic and shameful, but they believed people had to do what is right for them. All of these themes suggest that universities need to be better at supporting autistic people when they first come to university, and that they should actively offer clear support throughout and try and make the university environment more accessible for everyone, to ensure more autistic people have a positive university experience.
MeSH term(s)	Autism Spectrum Disorder ; Autistic Disorder ; Humans ; Qualitative Research ; Universities
Language	English
Publishing date	2020-05-31
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1338513-6
ISSN	1461-7005 ; 1362-3613
ISSN (online)	1461-7005
ISSN	1362-3613
DOI	10.1177/1362361320918750
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Article ; Online: Diagnosis as a new beginning not an end: A participatory photovoice study on navigating an autism diagnosis in adulthood.

Cage, Eilidh / Botha, Monique / McDevitt, Lynsey / King, Karis N / Biscoe, Liz / Tucker, Kirsty / Pearson, Amy

Autism : the international journal of research and practice

2024 , Page(s) 13623613231220418

Abstract: Lay abstract: Lots of people seek an autism diagnosis as an adult, and they often say that being diagnosed can be positively life-changing, but the experience of getting a diagnosis can be difficult. We often do not hear the views of people currently ... ...

Abstract	Lay abstract: Lots of people seek an autism diagnosis as an adult, and they often say that being diagnosed can be positively life-changing, but the experience of getting a diagnosis can be difficult. We often do not hear the views of people currently looking for a diagnosis, or talk to them about how diagnosis relates to their identity. In our study, we looked at experiences of people currently seeking an autism diagnosis in the UK. We used participatory methods, where six people seeking diagnosis were included as collaborators in the research. They took part in four different sessions, where they helped to shape the research, took part in interviews about their experiences and helped to analyse the patterns in all the interviews. We also used something called photovoice during the interviews, where they could use photos to show how they felt about navigating a diagnosis. We identified four common themes: (1) everyone had experienced some form of crisis before seeking diagnosis; (2) when they realised they were autistic, they felt seen; (3) the diagnostic process and criteria were not working, and they felt judged by clinicians and (4) there was limited support available after diagnosis. In another session, we identified actions that need to be taken which have implications for policy and practice, including improving the diagnostic process and criteria
Language	English
Publishing date	2024-01-17
Publishing country	England
Document type	Journal Article
ZDB-ID	1338513-6
ISSN	1461-7005 ; 1362-3613
ISSN (online)	1461-7005
ISSN	1362-3613
DOI	10.1177/13623613231220418
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Location:
Je nach Verfügbarkeit (siehe Angabe bei Bestand)
bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular
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ab Jg. 2022: Lesesaal (EG)

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Article: Personal Identity After an Autism Diagnosis: Relationships With Self-Esteem, Mental Wellbeing, and Diagnostic Timing.

Corden, Kirsten / Brewer, Rebecca / Cage, Eilidh

Frontiers in psychology

2021 Volume 12, Page(s) 699335

Abstract: Adults are increasingly seeking autism diagnoses, although less is known about their experiences of diagnosis and personal identity (i.e., autism as part of "me"), and how this relates to self-esteem and wellbeing. One-hundred and fifty-one autistic ... ...

Abstract	Adults are increasingly seeking autism diagnoses, although less is known about their experiences of diagnosis and personal identity (i.e., autism as part of "me"), and how this relates to self-esteem and wellbeing. One-hundred and fifty-one autistic adults completed an online survey including measures of self-esteem, psychological wellbeing, and autistic personal identity, which considered whether participants took pride in or were dissatisfied with being autistic. Fifty-four participants answered a qualitative question about the impact of receiving an autism diagnosis on their sense of self. Regression analyses found that greater time elapsed since diagnosis related to less dissatisfaction with autistic personal identity. We also found that more dissatisfaction with autistic personal identity predicted lower self-esteem, and more autism pride predicted higher self-esteem. Content analysis of participants' experiences supported the quantitative findings and was suggestive of an emotive post-diagnostic adjustment process. Future research should aim to identify ways to promote the development of a positive autistic personal identity post-diagnosis in adulthood.
Language	English
Publishing date	2021-07-30
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2563826-9
ISSN	1664-1078
ISSN	1664-1078
DOI	10.3389/fpsyg.2021.699335
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