Transitioning in and out of Autistic Flow: A Qualitative Study Presenting a Non‐Pathologising Approach to Autistic Well‐Being and Conceptualising Autistic Ways of Being in Clinical and Therapeutic Settings

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ABSTRACT Introduction Autistic flow is a term that has been used to describe the autistic experience of being deeply immersed in an activity. Autistic flow theory proposes that autistic people may be uniquely positioned to access and manage flow states. However, more research is needed to understand the facilitative conditions that support autistic people transitioning into and out of flow states, particularly given the complex interplay of sensory needs, monotropic focus and environmental factors. Aims and Methods Semi‐structured interviews were used alongside Interpretative Phenomenological Analysis (IPA) to explore the qualitative experiences of ten autistic people transitioning in and out of flow. Results The analysis highlighted three themes: (1) Flow is enjoyable and essential for autistic well‐being, playing a regulatory role in everyday experiences across sensory, emotional and cognitive facets; (2) autistic ways of being (i.e., monotropic attention, sensory sensitivity and repetitive behaviours) can amplify experiences in and out of flow; and (3) predictability is important for feeling safe to enter flow. Discussion We discuss the wealth of expertise autistic people possess about their own flow experiences and how this can be harnessed to build enabling environments for well‐being. The findings contribute to a non‐pathologising reconceptualisation of autistic ways of being through the approach of autistic flow theory.

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  • Cite Count Icon 35
  • 10.1111/jcpp.13691
Phenomenology of gender dysphoria in autism: a multiperspective qualitative analysis
  • Sep 12, 2022
  • Journal of Child Psychology and Psychiatry, and Allied Disciplines
  • Kate Cooper + 3 more

BackgroundAutistic people are overrepresented in gender clinic settings, but limited evidence is available to guide clinical decision making for this patient group. We aimed to generate a comprehensive understanding of the phenomenology of gender dysphoria in autistic people.MethodsWe conducted a multi‐perspectival interpretative phenomenological analysis (IPA), from five different perspectives; autistic young people and adults with experience of gender dysphoria, parents of young people, and clinicians working with autistic people with gender dysphoria in both adult and young person settings (n = 68).ResultsIPA analysis resulted in two themes, ‘discovering gender identity’ and ‘the complexities of moving towards gender comfort’. Participants agreed that there was often an interaction between gender dysphoria and features of autism such as sensory sensitivities. There was relative consensus across groups about the need for autism adaptations to be made in gender clinics. Autistic adults were more likely to see autism as an important identity than young people, but both groups were clear that autism did not impair their understanding of gender. In contrast, some parents and clinicians working with young people expressed concern that autism did impact self‐understanding.DiscussionWhile the groups tended to agree on the ways in which particular features of autism can compound gender dysphoria, there were a range of perspectives on the ways in which autism impacted on self‐knowledge.ConclusionRecommendations for adaptations when working with autistic people with gender dysphoria are presented.

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  • Cite Count Icon 11
  • 10.1177/13623613211034380
Cognitive processes in autism: Repetitive thinking in autistic versus non-autistic adults.
  • Jul 22, 2021
  • Autism
  • Kate Cooper + 5 more

Repetitive and restricted behaviours are a core feature of autism, and cognition in autistic individuals may also be repetitive and restricted. We aimed to investigate the relationship between repetitive behaviours and repetitive thinking. We predicted that autistic people would experience more repetitive, perseverative, visual and negative cognition than controls. We predicted that repetitive thinking would be associated with repetitive behaviours in the autistic participants. We recruited autistic (n = 54) and control (n = 66) participants who completed measures of insistence on sameness and obsessive-compulsive behaviours. Participants then took part in 5 days of descriptive experiencing sampling, recording their thoughts when a random alarm sounded. Consistent with our hypothesis, autistic participants reported more repetitive thinking. Contrary with our other hypotheses, autistic participants reported equivalent frequency of perseveration, visual thoughts and negative thoughts to non-autistic participants. Moreover, participants who reported more obsessive thinking reported more repetitive behaviour (insistence on sameness), but there was no such relationship between repetitive thinking and behaviour. Autistic participants who reported more repeated thoughts in the descriptive experience sampling had significantly lower obsessive thinking scores. We conclude that anxiety focused cognitions may drive insistence on sameness behaviours, and that the relationship between repetitive cognition and behaviour is complex and warrants further investigation.Lay abstractA core feature of autism is the tendency to do the same activity or behaviour repetitively. We wanted to find out if autistic people also experience repetitive thinking, for example, having the same thoughts repeatedly. We thought that there would be a link between repetitive behaviour and repetitive thinking. We asked 54 autistic people and 66 non-autistic people to complete questionnaires measuring repetitive behaviours and obsessive thinking. Next, participants were trained by a researcher to record their thoughts using a structured paper form. They then completed 5 days of thought recording, which they did each time a random alarm sounded on their mobile phone. We found that autistic people had more repetitive thoughts than non-autistic people, but they did not report having more negative or visual thoughts compared with non-autistic people. Autistic people who had more repetitive thoughts during the 5 days of thought recording did not report more repetitive behaviour. However, autistic people who reported more obsessive thinking, for example, more negative and unwanted thoughts, also reported higher levels of repetitive behaviour. We conclude that some repetitive behaviours may be linked to anxiety and that more research is needed to better understand repetitive behaviours in autism.

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  • Cite Count Icon 74
  • 10.1177/13623613211039113
The lived experience of gender dysphoria in autistic adults: An interpretative phenomenological analysis.
  • Aug 11, 2021
  • Autism : the international journal of research and practice
  • Kate Cooper + 3 more

Autistic people are more likely to be transgender, which means having a gender identity different to one’s sex assigned at birth. Some transgender people experience distress about this incongruence or gender dysphoria. Few studies have aimed to understand the inner experiences of this group. In this study, we used Interpretive Phenomenological Analysis to understand the lived experience of gender dysphoria. Twenty-one autistic adults were interviewed about their experience of incongruence between their gender identity and sex assigned at birth, and any associated distress. The interviews were transcribed and analysed using Interpretive Phenomenological Analysis. Participants described significant distress because their bodies did not match their gender identities, their need to understand their identities more broadly and to manage complex intersecting needs. Participants experienced distress due to living in a world which is not always accepting of gender- and neuro-diversity. Participants described barriers in accessing healthcare for their gender needs. Some participants felt being autistic had facilitated their understanding of their gender identity. Other participants described challenges such as a tension between their need to undergo a physical gender transition versus a need for sameness and routine. In conclusion, there can be both positive experiences and additional challenges for autistic transgender people.Lay Autistic people are more likely to be transgender, which means having a gender identity different to one’s sex assigned at birth. Some transgender people experience distress about their gender and sex assigned at birth not matching which is called gender dysphoria. Research has focused on finding out why autistic people are more likely to have gender dysphoria, and less on what the experience of gender dysphoria is like for autistic people. We interviewed 21 autistic adults about their experience of incongruence between their gender identity and sex assigned at birth, and any associated distress. We carefully read the transcripts of the interviews, focusing on how participants understood their experiences. We found a range of themes from the interviews. Participants were distressed because their bodies did not match their gender identities. Participants told us they had to work hard to understand themselves and who they were, and to manage having multiple different needs such as mental health needs. It was upsetting for participants to experience discrimination because of being autistic and/or transgender. Some participants said it was more difficult to get transgender healthcare as an autistic person. Some participants thought being autistic had helped them understand their gender identity more than non-autistic people. Other participants found it was challenging to be both autistic and transgender. For example, most participants wanted to change their bodies to match their gender identity, but some participants were nervous about making changes to themselves and their routine due to being autistic. We conclude that autism can in some ways be helpful and other ways contribute to challenges for transgender autistic people.

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  • 10.31219/osf.io/dpqy2_v1
A cross-neurotype analysis of camouflaging and illness perceptions in people with central sensitivity syndromes.
  • May 6, 2024
  • Sarah Louise Grant + 2 more

Central sensitivity syndromes (CSS) are a group of conditions thought to include an underlying sensitisation of the central nervous system. Evidence suggests autistic adults may be more vulnerable to developing CSS, and that autistic traits, sensory sensitivity and anxiety all contribute to this association. This study aimed to explore the relationship between camouflaging and CSS symptoms in autistic and non-autistic adults. In addition, an analysis of illness perceptions was completed to determine whether autistic and non-autistic people perceive their CSS differently. The sample comprised 504 adults (88 men, 416 women) with clinical diagnoses of autism, CSS, both conditions or neither, who completed online self-report questionnaires including autistic traits, sensory sensitivity, CSS, camouflaging, illness perceptions and mental health symptoms. Camouflaging significantly predicted CSS symptoms in this sample. Autistic people with a CSS had higher camouflaging scores (mean 130.28) than the other diagnostic groups, with a significant difference between controls and the CSS only group (p<.001). The autism only and CSS only groups had significantly higher camouflaging scores than the control group (p<001) but not from each other (119.35 vs 107.94). Autistic people reported a significantly more negative effect of chronic illness on their life (f (1,333) = 5.289 p =.022); there were few other differences in illness perceptions between autistic and non-autistic people with a CSS. Autistic camouflaging is associated with central sensitisation symptoms. Autistic people that receive a CSS diagnosis are particularly at risk for greater illness-related disability, including poorer quality of life and mental health.

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  • Cite Count Icon 22
  • 10.1089/aut.2020.0049
Autistic Narratives of Sensory Features, Sexuality, and Relationships.
  • Feb 9, 2021
  • Autism in Adulthood
  • Sarah Gray + 2 more

Research about the experience of sexuality and intimacy for autistic people has largely excluded the potential influences of autistic sensory features, which are highly common. The aim of this study was to explore how autistic sensory features influence autistic people's experiences of sexuality and relationships, including the impact of low and high neurological threshold sensory patterns and regarding specific sensory modalities. Utilizing a qualitative approach, we explored autistic people's perspectives about the influences of sensory features on their experiences of sexuality and relationships through existing publicly available narratives (5 books and 13 online forums containing messages from 72 unique usernames) and responses to an open-ended survey question (N = 49). We used deductive coding based on Dunn's model of sensory processing, as well as inductive coding to identify additional themes about autistic sensory features and sexuality. Our findings indicated that sexual and relationship experiences were related to both sensory sensitivity and sensation seeking (i.e., low and high threshold sensory patterns) across several sensory modalities, including touch, sight, sound, and smell. Sensory features influenced autistic people's sexual and relationship experiences in both positive and negative ways. Examined narratives revealed adaptations and strategies used by autistic people to enhance or enable engagement in sexual activity as well as implications for their sexual identity. Sensory features and their impact on the sexuality and relationship experiences of autistic people should be considered in clinical practice and educational programming. More research is needed to further understand the impact of autistic sensory features on experiences of sexuality and relationships, and to develop effective strategies to promote safe and satisfying engagement, when desired. Why was this study done?: Autistic people often respond to sensations differently than other people, including being more sensitive to sensations and/or wanting more intense sensations (called "autistic sensory features" in this study). Many aspects of sexuality and relationships involve sensory input. However, we do not know much about how autistic sensory features influence sexuality and relationships for autistic people.What was the purpose of this study?: The purpose of this study was to explore how autistic sensory features influence autistic people's experiences of sexuality and relationships.What did the researchers do?: For this study, we used two different sources of data. The first was existing publicly available things written by autistic people, including books and posts on online forums. The second was answers provided on a survey question asking about autistic sensory features and sexuality. Overall, we looked at things written by over 120 autistic people. We reviewed all the information to explore what kinds of sensory responses (e.g., sensitivities and sensation seeking) and sensory modalities (e.g., touches, sights, sounds, and smells) they wrote about. We also looked more generally to see how autistic people described the ways that autistic sensory features influenced their sexuality and relationship experiences.What were the results of the study?: Our findings show that in the information we accessed, autistic people did write about how sensory features influence their sexual and relationship experiences. Some people who have sensory sensitivities described confusion, distress, and frustration with sexual experiences. Despite wanting to participate, people with sensitivities described negative reactions to many of the sights, sounds, smells, and textures that were involved in dating and sexual activities. Other people indicated that they avoided sexual activity because of their sensory features. However, we also found that some autistic people seek out more intense sensations in their sexual activities, and others that enjoy intimacy that promotes calming and self-regulation. People wrote about strategies they use in response to their autistic sensory features, such as communication with partners and the use of substances to dull sensations.What do these findings add to what was already known?: There has not been much published research on this topic, so this study is a starting place. In books, as well as in online discussion boards, autistic people have been discussing the importance of sensory features to their sexuality and relationships. We accessed that information, and used theory and clinical experience to analyze their writings and help identify what other research is needed.What are potential weaknesses in the study?: We used text already written by autistic people and responses on one survey question for this study. Therefore, we may not have gained a complete understanding of the ways that autistic sensory features influence sexuality and relationship experiences.How will these findings help autistic adults now or in the future?: This study contributes to greater understanding of how autistic traits affect sexuality and relationships for autistic people. That information can be used to develop effective education and resources for autistic people, families, and service providers.

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  • Cite Count Icon 21
  • 10.1089/aut.2022.0021
Being, Knowing, and Doing: Importing Theoretical Toolboxes for Autism Studies.
  • Mar 1, 2023
  • Autism in Adulthood
  • Hanna Bertilsdotter Rosqvist + 5 more

The aim of this article was to think with and elaborate on theories developed outside of autism research and the autistic community, and through this support the production of new autistic-led theories: theories and concepts based on autistic people's own embodied experiences and the social worlds we inhabit. The article consists of three different sections all of part of the overall umbrella, Being, knowing, and doing: Importing theoretical toolboxes for autism studies. In each section, we import useful concepts from elsewhere and tailor them to autism studies. Throughout, we mingle our own autoethnographic accounts and shared discourse in relation to research accounts and theories. Illustrating being, we explore and discuss the possibilities of critical realism in autism studies. Illustrating knowing, we explore and discuss the possibilities of standpoint theory in autism studies. Finally, illustrating doing, we explore and discuss the possibilities of neurocosmopolitics including epistemic (in)justice in autism studies. Our proposal here is for an epistemic shift toward neurodiverse collaboration. We are inviting nonautistic people to work with, not on, us, aiming at to make autism research more ethical, breaking down bureaucratic structures, and questioning poor theory and shoddy methodology. Acknowledging intersecting axes of oppression in which an individual seeks to renegotiate and reimagine what it means to belong also means to understand what needs changing in society, as it is and how we might do things differently.

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Conform or be ostracised: restricted and repetitive behaviours in non-autistic persons
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  • Cite Count Icon 4
  • 10.1007/s40489-025-00505-1
Expanded Descriptions of Autistic Repetitive Behaviours: a Constructivist Grounded Theory Review Exploring the Perspectives of Autistic Young People and Other Stakeholders
  • May 20, 2025
  • Review Journal of Autism and Developmental Disorders
  • S Petty + 1 more

Restrictive and repetitive behaviours are part of autistic identity. However, in clinical decision making, there are too few representative examples, qualitative descriptors, and personal meanings of rituals and routines in particular. This systematic review sought descriptions of repetitive behaviours from autistic young people, their families, and professionals. Constructivist grounded theory analysis illustrated the unsuitability of diagnostic criteria alone in defining autistic behaviours. Repetitive behaviours were meaningful when described by autistic people. They provided coping strategies and a window of time when a person felt at ease in their world, with fewer cognitive, social, and sensory demands. The visibility, excess, and inflexibility of repetitive behaviours demonstrated an autistic person’s responsiveness to demanding contexts. A definition of autistic repetitive behaviours is presented.

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  • Cite Count Icon 54
  • 10.1177/1362361318778286
Autistic people's perspectives on stereotypes: An interpretative phenomenological analysis.
  • May 31, 2018
  • Autism
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Autism stereotypes can often portray autistic people in a negative way. However, few studies have looked at how autistic people think they are perceived by others, and none have specifically asked autistic people what they think the autistic stereotypes are. Semi-structured interviews with 12 autistic adults (aged between 20 and 63 years) were conducted. Using interpretative phenomenological analysis, three main themes emerged from the data. These were as follows: (1) the primary stereotype is that autistic people are 'weird'; (2) autistic stereotypes have negative effects and consequences; and (3) autistic people are heterogeneous. This study makes an important and novel contribution to understanding the experience of being autistic by exploring how autistic people feel they are perceived by others and identifying some of the ways in which negative stereotypes are believed to have negative consequences for autistic people.

  • Supplementary Content
  • Cite Count Icon 1
  • 10.17635/lancaster/thesis/1253
Autism Entangled:Controversies over Disability, Sexuality, and Gender in Contemporary Culture
  • Jan 1, 2021
  • University of Lancaster
  • Toby Atkinson

Public visibility of autistic people has increased significantly since the early 1990s. Diagnosis rates of autism have risen in Western countries, whilst cultural representations of autistic people have proliferated across various forms of media. This period has also seen the emergence of the neurodiversity movement which views autism in terms of difference rather than defects and politically organises to challenge disablist oppression. This thesis explores the ways in which autistic people have been represented as sexual and gendered subjects in the United Kingdom from the early 1990s to the present day and analyses the implications of such representations for autistic people’s lives. It considers how influential representations of autistic people, for example, pop cultural portrayals of autistic people as male geeks, have been challenged by autistic self-advocates who argue that such framings fail to recognise autistic people’s diverse experiences. Over the course of this thesis, I combine critical theoretical work from across the humanities and social sciences with empirical analysis of a selection of texts in order to develop a multifaceted account of how autistic people are represented as gendered and sexual subjects in the contemporary moment. I analyse a range of texts exploring autistic people’s experiences of gender and sexuality, with my sample including self-help books, academic publications, television shows, and autistic self-advocacy writing. Drawing upon theoretical work from neurodiversity studies, disability studies, feminist theory, and queer theory I intervene in ongoing debates and controversies surrounding representations of autistic people as gendered and sexual subjects, for example, the moral panic over the public visibility of young autistic gender variant people. I demonstrate the complex ways in which framings of autistic experience produced within scientific research inform popular media texts, as pathologising, essentialist, and infantilising medical and psychological terms are troubled and reproduced by such texts. I show how texts produced by autistic people challenge biomedical and psychological framings, offering more inclusive representations which recognise autistic people’s gender and sexual diversity. These texts highlight the role of social factors in shaping autistic people’s lives and provide platforms for the perspectives of autistic women, gender variant people, and LGBTQ people. I argue that these works can inform future academic research within the social sciences and humanities, offering more sociological and critical accounts of autistic people’s experiences, and can encourage alternative representations of autistic people in popular culture. Writing as an autistic scholar concerned with issues of disability, gender, and sexuality, the thesis synthesises existing theoretical and original empirical work in order to develop a sociological analysis of biomedical, psychological, and cultural representations which affect autistic people’s lives. In this way, the thesis contributes to the growing field of neurodiversity scholarship within academic research.

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  • Cite Count Icon 5
  • 10.1111/1460-6984.13095
Cross-neurotype communication from an autistic point of view: Insights on autistic Theory of Mind from a focus group study.
  • Jul 31, 2024
  • International journal of language & communication disorders
  • Eleonora Marocchini + 1 more

The conceptualisation of autism as a disorder where Theory of Mind (ToM) and pragmatics are fundamentally impaired has prompted a wealth of research on autistic deficits, most of which is characterised by two main assumptions: first, that autistic people would display said deficits, if present, with any conversation partner and in any situation; second, that neurotypical people do not present these deficits, regardless of the conversation partner. However, this is not necessarily reflected in autistic accounts of the way they experience social cognition and pragmatics. The present paper aims to investigate the autistic experience of communication with both autistic and neurotypical people, with a particular focus on their perception of the ability of autistic and neurotypical people to understand their communicative intentions. Participants, 23 adult Italian autistic people without intellectual disability or language disorders, were recruited online. Two virtual focus groups of 2 hours each were conducted, transcribed and analysed through thematic analysis with a descriptive phenomenological approach by two independent researchers. Six themes were developed from the analysis, the most relevant being Autistic-Autistic communication and Autistic ToM. The results, in line with the Double Empathy theory, suggest there seem to be important differences between neurotypical and autistic people's ToM. These appear to make it easier for autistic people to communicate with one another, as well as to create difficulties for neurotypical people to understand autistic people, not just the other way around. These results seem to confirm that challenges in cross-neurotype communication are better interpreted as mutual miscomprehension and reciprocal differences in ToM rather than deficits on the autistic part. This calls for a reframing of ToM and/or the need for autistic ToM as a construct, of which neurotypical people seem to be lacking. Moreover, these insights should be taken into account for speech and language therapy and clinical practice in general, advocating for a neurodiversity-informed view of co-constructed communication as well as for a broader societal change in which therapists can play a crucial role, through participatory approaches or raising awareness in their daily practice. What is already known on the subject Autism is conceived as characterised by social cognition and communication difficulties, often linked to Theory of Mind (ToM) deficits. However, recent research suggested variations in ToM abilities within the autistic population and proposed alternative theories like the Double Empathy theory. Nevertheless, only a few studies examined how autistic individuals perceive communication across neurotypes. What this study adds Autistic individuals seem to find it easier to communicate with other autistic people, and they identify specific characteristics of neurotypical communication that hinder successful communication. Moreover, neurotypical people are perceived as having difficulties in autistic ToM, which seems to emerge as a relevant and needed construct in light of the Double Empathy problem. What are the clinical implications of this work? These findings can inform speech and language therapy and clinical practice about the potential gains of raising awareness on the Double Empathy problem and the higher communication ease inside the autistic community, alongside individualised support. Participatory approaches and closer collaboration with the autistic community also seem to be crucial for therapists to help improve communication experiences for autistic individuals.

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  • Cite Count Icon 8
  • 10.1177/13623613241275468
Insistence on sameness, repetitive negative thinking and mental health in autistic and non-autistic adults.
  • Sep 14, 2024
  • Autism : the international journal of research and practice
  • Kate Cooper + 1 more

Autistic people are more likely to have mental health problems than non-autistic people. We know that having repetitive and negative thoughts can contribute to multiple mental health problems such as depression and obsessive-compulsive disorder. Autistic people often do the same behaviours repetitively, and they may also have more repetitive thinking styles. This could contribute to higher rates of mental health problems in autistic people. In this research, we wanted to find out if higher rates of repetitive behaviours contributed to depression and anxiety, and whether this relationship was because of repetitive negative thinking. We asked three groups of autistic adults to take part in the research. Sixty-seven autistic clinical participants were recruited from clinical settings and had moderate depression. Fifty-four autistic community participants and 66 non-autistic community participants were recruited from community settings. All participants completed measures of repetitive behaviours; a measure of anxiety and depression; and two measures of repetitive negative thinking (ruminating and obsessing). Autistic community participants had significantly higher repetitive behaviours, rumination and obsessing scores than non-autistic community participants. We found that higher rates of repetitive behaviours contributed to more repetitive thinking (obsessing and ruminating), which contributed to higher rates of depression and anxiety. The higher rates of repetitive negative thinking found in autistic individuals may contribute to higher rates of mental health problems in this group. Mental health assessments and interventions for autistic people should therefore consider the role of multiple forms of repetitive negative cognition and behaviour, which cut across diagnostic categories such as anxiety, depression and obsessive-compulsive disorder. These should be considered when aiming to understand why individuals develop mental health conditions and why these conditions persist.

  • Preprint Article
  • 10.31234/osf.io/bc6ym_v1
Central Sensitivity Symptoms and Autistic Traits in Autistic and non-Autistic Adults
  • Feb 2, 2024
  • Sarah Louise Grant + 2 more

Central sensitivity syndromes (CSS) are a group of related conditions thought to include an underlying sensitisation of the central nervous system. Evidence suggests autistic adults experience more physical health symptoms than the general population and could be more vulnerable to developing CSS. This study examined CSS diagnoses and symptoms in autistic and non-autistic adults, to determine whether CSS symptoms were related to autistic traits, mental health, sensory sensitivity, or gender. Participants included 534 adults with clinical diagnoses of autism, CSS, both conditions or neither, who completed online self-report validated questionnaires. Independent t-tests, ANCOVA, hierarchical regression analysis and path analysis were used to analyse relationships between CSS symptoms, autistic traits, depression, anxiety, sensory sensitivity, age, and gender. Autistic people without a diagnosed CSS reported significantly more CSS symptoms than controls, with a mean score above the clinical cut-off. Non-autistic participants with a CSS had significantly more autistic traits than controls. Autistic people with a diagnosed CSS reported the most sensory sensitivity, with autism only and CSS only groups reporting similar levels of sensory difficulties and all diagnostic groups reporting more sensory sensitivity than controls. Sensory sensitivity, anxiety, autistic traits, age and gender were all significant predictors of CSS symptoms. There appears to be a large crossover between physical health symptoms in autistic people and people with a diagnosed CSS, suggesting there may be diagnostic overshadowing in these populations. Increased awareness of an association between autistic traits and CSS symptoms should inform clinicians and guide diagnostic practice.

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  • Cite Count Icon 5
  • 10.1089/aut.2023.0127
What Matters Most? An Exploration of Quality of Life Through the Everyday Experiences of Autistic Young People and Adults.
  • May 28, 2025
  • Autism in adulthood : challenges and management
  • Heidi Merrington + 6 more

The quality of life (QoL) of Autistic people is consistently reported to be poor compared with the general population. Little is known, however, about how Autistic people experience QoL from their perspectives and the ways they would like it to be enhanced. This qualitative study, conducted in collaboration with Autistic people, sought to understand how Autistic young people and adults define a good life and what helps and hinders them from achieving a good QoL. We conducted semi-structured in-depth interviews with 34 Autistic adults and 14 Autistic adolescents about their everyday life experiences of different aspects of QoL, including physical health, sensory needs, mental health, money, home, transport, leisure, social connections, acceptance, and inclusion, being in charge of one's life and perceptions of the future. We coded transcripts in NVivo and analyzed them using reflexive thematic analysis. We identified four themes: two themes that described what a good QoL meant for our participants along with aspects of their lives that facilitated a good QoL: "feeling good" and "being myself in the world"; and two themes that described barriers to achieving a good QoL: "exhaustion and overwhelm" and "negative experiences shape perceptions." These findings highlight the need to consider Autistic people's QoL within the context of their everyday realities. Enhancing QoL will only be achieved through focusing on these realities and through the provision of adaptations and supports to create more inclusive environments.

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  • Research Article
  • Cite Count Icon 8
  • 10.1177/13623613241251512
‘Autism is the Arena and OCD is the Lion’: Autistic adults’ experiences of co-occurring obsessive-compulsive disorder and repetitive restricted behaviours and interests
  • May 10, 2024
  • Autism
  • Hannah Long + 2 more

Obsessive-compulsive disorder commonly co-occurs with autism. Research characterising the interplay between restricted, repetitive behaviours, activities and interests related to autism and obsessive-compulsive disorder symptoms has used theory-driven, bottom-up methodology. This study aimed to interview autistic adults about the subjective experience of differentiating between these phenomena. Semi-structured interviews were conducted with 15 autistic adults experiencing obsessive-compulsive disorder symptoms and repetitive behaviours, activities and interest. Transcripts were analysed using reflexive thematic analysis from a critical-realist, inductive orientation. Three overarching themes are presented. Participants viewed repetitive behaviours, activities and interest as intrinsic to their identity, while obsessive-compulsive disorder remained ego-dystonic and a perpetuator of anxiety. Conversely, repetitive behaviours, activities and interest was present across various emotions, often serving as a method to manage anxiety. Routinised behaviours and focused interests were considered by participants to be vulnerable to obsessive-compulsive disorder exploitation. Although participants reported masking both phenomena, the methods and motivations to mask differed. This research demonstrates the importance of delineating these experiences, with suggestions offered in how to explore this with autistic clients. Future research could explore narratives of masking obsessive-compulsive disorder across autistic and non-autistic people and investigate simultaneous co-occurrence of obsessive-compulsive disorder and repetitive behaviours, activities and interest; including how focused interests may influence obsessive-compulsive disorder and how repetitive routines may be intensified by obsessive-compulsive disorder.Lay Repetitive behaviours and interests are a hallmark feature of autism. It is very common for autistic people to experience mental health difficulties, such as obsessive-compulsive disorder. Previous research has investigated similarities and differences between obsessive-compulsive disorder symptoms and repetitive behaviours in autism through questionnaires and observation studies. This is the first study to interview autistic adults about their personal experiences of differentiating between obsessive-compulsive disorder symptoms and repetitive behaviours related to autism. We interviewed 15 autistic adults who experience obsessive-compulsive disorder symptoms. We recorded these interviews and carefully analysed these to find themes. We found some differences between repetitive behaviours and obsessive-compulsive disorder. Participants said repetitive behaviours are part of who they are and what they want to be doing, whereas obsessive-compulsive disorder symptoms conflicted with how they view themselves. Obsessive-compulsive disorder was said to cause negative emotions, while participants said they experience lots of different emotions when doing repetitive behaviours. A similarity participants reported was trying to stop themselves from doing obsessive-compulsive disorder symptoms and repetitive behaviours that other people can see. There was also overlap between obsessive-compulsive disorder and repetitive behaviours. Participants talked about experiences when obsessive-compulsive disorder would take over routines and make them feel more intense and negative. Also, participants’ special interests were sometimes connected to the obsessions they experienced. We conclude that clinicians can use these findings to support conversations with autistic clients in differentiating between repetitive behaviours and obsessive-compulsive disorder symptoms. We also think that further research investigating how obsessive-compulsive disorder symptoms might be hidden by autistic and typically developing people is needed.

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