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“Masking Is Life”: Experiences of Masking in Autistic and Nonautistic Adults
Abstract
Background:
Autistic masking is an emerging research area, and so far, research has suggested that masking has a negative effect on autistic people. Masking relates to general social practices (such as identity management) and is often driven by stigma avoidance. Many nonautistic people also experience stigma that might drive them to suppress aspects of their identity. In this study, we investigate similarities and differences in experiences of masking in autistic and nonautistic people.
Methods:
We conducted an online survey about experiences and views of masking in autistic people (n = 144), neurodivergent people without an autism diagnosis (n = 49), and neurotypical people (n = 45) recruited via social media. We used thematic analysis to analyze responses to open-ended items about masking, using an inductive approach, at a semantic level, with a critical realist paradigm.
Results:
Thematic analysis revealed that some aspects of masking are shared across autistic and nonautistic people, such as utilizing mimicry of others as a social strategy or feeling exhausted from masking. All groups reported that masking made them feel disconnected from their true sense of identity and had a negative effect on them. Other aspects of masking seemed more specific to autistic people, such as sensory suppression, and masking leading to suicidal ideation.
Conclusions:
Our findings suggest that many aspects of masking are experienced across different neurotypes and are likely related to outside perceptions of difference and stigma. It is likely that what we call "autistic masking" is similar to other forms of stigma management previously theorized. Some aspects of masking do seem more specific to the autistic neurotype (e.g., suppression of stimming) and should be explored further to provide support for autistic people recovering from the negative impact of masking.
Lay summary:
Why was this study done?: Masking is the process of intentionally, or unintentionally, hiding aspects of yourself to avoid harm. Recent research has suggested that autistic people might mask a lot and that this can lead to long-term problems in mental health. At the moment, we do not know which parts of masking are specific to autistic people, and which parts might be experienced by others, especially other neurodivergent people who are not autistic, for example, people with attention-deficit hyperactivity disorder (ADHD).What was the purpose of this study?: The purpose of this study was to find out about masking in autistic and nonautistic people, to find out whether some parts of masking are specific to autistic people, or experienced by others.What did the researchers do?: We conducted an online survey about masking with three groups of people: autistic people, nonautistic people who have another neurodevelopmental or mental health diagnosis, such as dyslexia, ADHD, or depression, and nonautistic people who do not have any neurodevelopmental or mental health diagnoses. The survey included an open text box for people to write about their experiences of masking and their opinions about masking. We analyzed these responses using a method called "thematic analysis." This method helps us look for ideas that people commonly talk about in their answers.What were the results of this study?: We found out that autistic and nonautistic people think masking is very complicated and has a negative effect on them. Both autistic and nonautistic people said that masking made them exhausted and really unhappy and that it made them feel like people did not know the "real them." Only autistic people mentioned that masking sometimes makes them feel suicidal and that masking includes things that other groups did not mention (such as trying to hide being upset by sensory things such as loud noise).What do these findings add to what was already known?: Our findings suggest that some aspects of masking do not just affect autistic people (such as feeling like people do not know the real you), but other parts might be more unique to autistic people (such as hiding stims from other people).What are potential weaknesses in this study?: More women than men and nonbinary people took part, which means that we know more about women than other people. We also do not really know whether everyone in the nonautistic groups were really "not autistic." They could be autistic people who do not have a diagnosis, which might affect our results.How will these findings help autistic people now or in the future?: We hope our findings will help people to understand how masking affects autistic and nonautistic people. We also hope that people designing new studies will look at important things such as whether someone is autistic and nonbinary, or autistic and ADHD as these things might affect their experiences.
... This could then create some anxiety around the true self, as shown in 461 autistic adults (autistic mean age = 36.3 years) who completed open-ended questionnaires (Miller et al., 2021), and the possible loss or challenge to one's identity (Seers & Hogg, 2023) as found in 8 autistic women (mean age = 39.12 years) through interviews. Quantitative research, through the use of outcomes measures, has shown that camouflaging can create stigma for 233 autistic adults (mean age = 28.67 years) (Perry et al., 2021) as it can be considered as offensive to others when camouflaging does not work if others think that they are being "intentionally rude or arrogant" (Bradley et al., 2021, p. 325), possibly by adopting the behaviours of others. ...
... Finally, as previously touched upon, the current review found that a negative consequence of social camouflaging for autistic adults is the impact on mental health and wellbeing. Across the studies reviewed camouflaging has been found to be emotionally exhausting for autistic adults and can result in burnout due to the cognitive demands required to engage in camouflaging on a regular basis (Mantzalas et al., 2022;Miller et al., 2021;Radulski, 2022;Raymaker et al., 2020). Understandably, this will have an impact on mental health more broadly and will subsequently lead to the experience of anxiety, depression, and stress in the long-term. ...
... Understandably, this will have an impact on mental health more broadly and will subsequently lead to the experience of anxiety, depression, and stress in the long-term. This link was found consistently across studies, whereby camouflaging was shown to positively correlate with these difficulties in autistic adults (Beck et al., 2020;Bradley et al., 2021;Bowri et al., 2021;Cage & Troxell-Whitman, 2019;Cook, Crane et al., 2021;Hull et al., 2021;Hull et al., 2020;Hull et al., 2017;Mantzalas et al., 2022;Miller et al., 2021;Milner et al., 2023;Radulski, 2022;Seers & Hogg, 2023;Van Der Putten et al., 2023). The research by Bowri et al. (2021) on camouflaging found that mental health difficulties, such as anxiety and depression, were positively related to autistic traits in 237 autistic adults (mean age = 41.92 years). ...
... 29 8 Allistic-passing individuals, proficient in employing behavioral strategies to assimilate allistic norms, often evade diagnostic detection or fail to recognize their own autism due to their diminished exhibition of stereotyped traits. 30,31,32 Termed autistic camouflage, this phenomenon has garnered significant attention, particularly in the context of White autistic women, 33,34,35,36 highlighting the role of patriarchy in shaping their socialization experiences. Furthermore, while the marginalization of women in autism research has been acknowledged, current discourse predominantly focuses on the intersection of autism, camouflage, and White womanhood, leaving other intersections unexplored. ...
... Miller et al. 31 further expound on camouflage as a concept embraced within the autistic community, representing a conscious effort to suppress certain aspects to mitigate social stigma and conform to conventional norms. Additionally, Pearson and Rose 32 delve into the multifaceted nature of camouflage, highlighting its potential manifestation as either a conscious or unconscious suppression of innate autistic responses to adopt alternative behaviors. ...
... gives rise to what I term the "dual masking phenomenon", elucidating an intricate reality where non-White autistic individuals navigate two distinct coping mechanisms simultaneously: White mimicry 42 and autistic camouflage. 31,32,30 In this scholarly contribution, leveraging my personal identity and experiences as an autistic multiracial Latina, I undertake a rigorous critical autoethnographic 46 Through the promotion of acknowledging racial identifiers instead of presuming neutrality, we can engender a more profound understanding of autistic identities. ...
Background: Autistic camouflage describes how autistic individuals assimilate allistic behavior for societal acceptance, while White mimicry demonstrates how non-White individuals assimilate white identities. These coping strategies, though different, are significant for non-White autistic individuals. Understanding them is crucial for mitigating racial and ethnic biases in autism research and clinical practice, emphasizing the importance of addressing ethnic and racial identity assimilation, not only behavior, in both spheres.
Method: Employing critical autoethnography aimed at advancing the decolonization of research and fostering equitable knowledge production. This approach entwined personal narratives with theoretical frameworks, transcending mere depiction. Validation of findings through peer debriefing was instrumental, while my positioning as a multiracial Latina illuminated the intricate dimensions of racial identity and bias within the study's context.
Results: This research uncovered the "dual masking phenomenon" in non-White autistic individuals, encompassing both White mimicry and autistic camouflage. These complexities illuminate challenges within racially influenced societal contexts, advocating for tailored support for non-White autistic individuals. Narratives unveiled prevalent tokenism, microaggressions, privilege, epistemicide, and meritocracy within predominantly White autistic environments, shedding light on systemic barriers and the pressure to assimilate Whiteness to access opportunities. The study underscores the imperative to question neutrality and rectify disparities within the non-White autistic community.
Discussion: The inefficacy of solely relying on autistic camouflage for non-White autistic individuals within racially influenced societal contexts is underscored. Instead, mimicking Whiteness emerges as a more effective strategy to navigate oppression. The "dual masking phenomenon" reveals systemic barriers and pressures for assimilation faced by non-White autistic individuals, further exacerbated by tokenism, microaggressions, and epistemicide prevalent in predominantly White autistic spaces. Recommendations advocate for integrating racial considerations in research, educating health professionals on racial dynamics, and fostering racial stamina to address disparities within the non-White autistic community.
... There are various definitions of masking in the literature, most emphasizing the suppressive aspects of impression management to help individuals -blend in.‖ A recent definition, noted for its clarity and simplicity, is offered by Miller et al. (2021): -Masking is a term used by the autistic community to describe the suppression of aspects of self and identity to ‗fly under the radar' or ‗appear normal,' using conscious (i.e., mimicking facial expressions) or unconscious (i.e., unintentionally suppressing aspects of one's identity) means. We use ‗masking' as an umbrella term to capture experiences that have been referred to as ‗camouflaging,' ‗compensation,' and ‗adaptive morphing.'‖ ...
... We use ‗masking' as an umbrella term to capture experiences that have been referred to as ‗camouflaging,' ‗compensation,' and ‗adaptive morphing.'‖ (Miller et al., 2021). ...
... Some of these behaviors exist to some extent in neurotypical individuals as well, though certain elements are specific to autistics, such as suicidal thoughts or trying to hide behaviors considered unusual, like spontaneous reactions to loud stimuli (Miller et al., 2021). Other researchers highlight that camouflaging also occurs in non-autistic individuals and is associated with poor mental health, including heightened levels of depression, anxiety, and stress (Somerville et al., 2023). ...
One of the most significant challenges that neurodivergent individuals face is the struggle to maintain a sense of authenticity when confronted with strong pressures to conform to the behaviors and norms expected by the majority. This issue arises in everyday settings, with notable implications healthcare and professional contexts and especially in educational settings. In this paper, we will explore whether a radical shift in the current educational system is necessary to safeguard the authenticity of vulnerable individuals, considering authenticity as a right rather than a privilege. First, we will examine how educational practices often sacrifice the authenticity of autistic students, encouraging them to conform to neurotypical behaviors through masking and impression management techniques. Such approaches can have significant consequences, including heightened stress, emotional exhaustion and suicidality. Similarly, foreign-born students face pressures to assimilate, which can lead to the suppression of their cultural identities and a loss of self. Drawing parallels between the experiences of autistic individuals and immigrants, the paper explores how both groups navigate social spaces that demand conformity to either cultural or neurotypical norms, often at the expense of their authentic selves. In the second part of the paper, we will take into consideration the opportunity and the ethical urgency of possible solutions for preserving the authenticity of minority groups as those we analyze (although parallels and implications can be extended to other marginalized identities), such as incorporating neurodiversity and cultural diversity into the curriculum, adopting more flexible assessment methods, and providing training for educators on recognizing and supporting authentic self-expression. The paper also presents arguments favoring reforming educational settings to preserve authenticity, emphasizing the potential benefits for well-being and equity. However, it balances this perspective by considering the challenges of such reforms, including pushback from administrators, acknowledging the need to prepare students to navigate broader social norms as long as the social spaces are dominated by neuronormativity, and the practical difficulties of implementing systemic changes. Ultimately, the paper highlights the complexity of the issue and calls for a nuanced approach to fostering authenticity in education.
... The level of effort participants placed into connecting with others was astonishing and was also a significant finding of this study. It corroborates the assertion that autistic individuals put substantially more effort into understanding and relating to others than their non-autistic communication partners [25,64]. Some may argue that both neurotypes will experience challenges when connecting with others, may complete some form of research when interacting with new people or unfamiliar settings, and may substitute their social behaviors to avoid social stigma [64,65]. ...
... It corroborates the assertion that autistic individuals put substantially more effort into understanding and relating to others than their non-autistic communication partners [25,64]. Some may argue that both neurotypes will experience challenges when connecting with others, may complete some form of research when interacting with new people or unfamiliar settings, and may substitute their social behaviors to avoid social stigma [64,65]. However, the extent to which autistic individuals are impacted is significantly greater and more harmful than non-autistic individuals [64]. ...
... Some may argue that both neurotypes will experience challenges when connecting with others, may complete some form of research when interacting with new people or unfamiliar settings, and may substitute their social behaviors to avoid social stigma [64,65]. However, the extent to which autistic individuals are impacted is significantly greater and more harmful than non-autistic individuals [64]. For autistic individuals, masking is associated with impairments in mental health [15,66], a loss of one's identity, is based on a foreign social communication style and has been related to suicidality and unhealthy coping strategies [64]. ...
Historically, society has labeled social communication differences in autistic individuals as disordered by comparing them to the social communication behaviors of the predominant non-autistic population. This study explores how autistic young adults view their social communication experiences and how their differences impact them when navigating social situations in predominantly non-autistic environments. This qualitative study utilized purposive sampling to recruit 15 autistic adults aged 18–28 in the United States. All participants were conversation-level speaking communicators and high school graduates. Each participant engaged in an individual semi-structured, conversational interview with the first author via Zoom video conferences between November 2019 and June 2020. The data analysis identified inductive themes through interpretive phenomenological analysis. Five major themes emerged from the data that captured the challenges of autistic adults: (a) “Communication definitely is a struggle at times”, (b) “if it’s a very comfortable situation, then it’s fine”, (c) my communication style has “been very misunderstood”, (d) “I have to learn people”, and (e) “we’re all human. Autistic too, we’re still human”. The participants’ experiences suggest that differences in their communication style and social behavior resulted in overwhelming feelings of uncertainty and marginalization as they put great effort into engaging with non-autistic individuals.
... One of the primary obstacles to diagnosing Autism in women is the practice of masking, which involves concealing one's true self as an Autistic individual, striving to appear "normal" to fit in and avoid pity, condescension, or harassment due to being different (Hull et al., 2020;Miller et al., 2021). This masking behaviour is essentially a survival strategy, and it has been shown to be more prevalent among women and influenced largely by patriarchal norms (Miller et al., 2021). ...
... One of the primary obstacles to diagnosing Autism in women is the practice of masking, which involves concealing one's true self as an Autistic individual, striving to appear "normal" to fit in and avoid pity, condescension, or harassment due to being different (Hull et al., 2020;Miller et al., 2021). This masking behaviour is essentially a survival strategy, and it has been shown to be more prevalent among women and influenced largely by patriarchal norms (Miller et al., 2021). The widespread nature of this camouflaging is particularly noteworthy. ...
... The widespread nature of this camouflaging is particularly noteworthy. It is often experienced as an obligation rather than a choice and is frequently motivated by self-preservation to avoid bullying or attacks (Hajikarim-Hamedani & Motamed, 2023;Miller et al., 2021). Hajikarim-Hamedani & Motamed (2023) found that Autistic women tend to feel a stronger compulsion to mask because societal upbringing strongly encourages, and sometimes even coerces them to be agreeable and social, pushing them to find ways to conform to traditional societal expectations. ...
At the crossroads of femme theory and Autistic femininity lie the nuanced experiences of individuals whose identities challenge societal norms of both gender and neurodiversity. By delving into these intersections, this article seeks to illuminate the unique perspectives of Autistic individuals who, in some aspect, identify with femininity. Employing six core principles of femme theory—reclaiming femininity, valuing feminine knowledge and characteristics, intersectionality, agency and empowerment, visibility and inclusivity, and resistance to femmephobia and misogyny—, the authors analyze, through theory application, how these principles manifest in the lives of Autistic individuals. Using femme theory, this research identifies the nuanced ways Autistic individuals navigate societal expectations and stereotypes. The findings contribute to a more comprehensive understanding of the diverse spectrum of femininity, emphasizing the importance of recognizing and respecting the agency and experiences of Autistic individuals.
... Across qualitative narratives, autistic people link camouflaging with mental health challenges, such as through feeling exhausted and anxious due to the behavioural monitoring that goes into camouflaging (Hull et al., 2017). Moreover, camouflaging has been discursively causally connected to suicidality and self-injury in autistic people Miller et al., 2021), which reinforces the importance of elucidating its role in autistic mental health. ...
... Despite the clear perceived link between camouflaging and adverse mental health outcomes in qualitative research (Bargiela et al., 2016;Hull et al., 2017;Miller et al., 2021;Radulski, 2022;Raymaker et al., 2020), quantitative evidence remains mixed, with some studies finding significant associations between increased camouflaging and increased symptoms of mental health conditions such as depression and anxiety (Evans et al., 2023;Hull et al., 2021) and some not identifying any significant relationships (e.g., anxiety in Lai et al., 2017 andSchuck et al., 2019). In several studies, any identified significant relationships between camouflaging and symptoms of mental health conditions did not hold during subgroup analyses. ...
... Insights from previous research may help understand why. In qualitative studies, autistic people report that camouflaging feels exhausting, potentially leading to burnout and suicidal ideation Miller et al., 2021;Raymaker et al., 2020). Some have attributed the perceived mental health effects of camouflaging to feeling inauthentic and pressured to 'perform' neurotypically, leading to a disconnect between what one sees as their real self and the way they feel forced to present themselves in interpersonal interactions (Miller et al., 2021;Seers & Hogg, 2023). ...
... From a young age, I was taught to observe and imitate neurotypical behavior, a practice known as autistic camouflage or masking (Miller and Pearson 2021;Pearson and Rose 2021). I feel as though I am part of a theatrical production, where everyone else knows their lines but me. ...
... A parallel process unfolds among autistic individuals, who engage in "masking" as a response to the stigma associated with neurodivergence. Similar to White mimicry, masking involves suppressing autistic traits to conform to neurotypical norms (Miller & Pearson, 2021;Pearson & Rose, 2021). While this act may seem like a survival strategy to navigate neurotypical environments, it carries severe consequences, including emotional health deterioration, burnout, and an increased risk of suicide (Pearson & Rose, 2021). ...
Neutrality, epitomized as Whiteness, confers privileges that hinge on being neurotypical, equating neutrality with both Whiteness and the perception of normalcy. For individuals who are both autistic and non-White, navigating this construct often means enduring intersecting forms of oppression. This article examines these dynamics through the personal narratives of a Black neurotypical woman and an autistic Latina in the workplace. Drawing on Critical Racial Studies, Critical Autism Studies, Whiteness Studies, and ethnographic research, we highlight the urgent need for collaboration across these fields. To advance this effort, we introduce the term neuroaquilombar, representing a deliberate approach to cultivating collective spaces that affirm cultural identity for Black and non-White populations while embracing neurological diversity as a natural aspect of humanity. Through collaborative autoethnography as escrevivências, we reflect on the challenges of conforming to capitalist productivity standards in a society structured for the success of the White, able-bodied majority. By recounting our workplace experiences, we aim to deepen understanding, foster connections that humanize diverse experiences, and issue a call to action for advocates in both spheres. Additionally, we seek to showcase new forms of engagement that transcend the extractive practices often associated with anthropological research conducted by non-disabled White scholars.
... One challenge is masking, the attempt to disguise autistic traits, and it has been repeatedly highlighted as a major stressor in the lives of autistic adults; however, its connection to employment is yet to be explored (Alaghband-rad et al., 2023;Miller et al., 2021). Chronic exposure to stressors, coupled with limited resources, increases the likelihood of burnout (Aronsson et al., 2017;Demerouti et al., 2001). ...
... Coping strategies, such as the flexible use of masking, stress management, and disclosure choices, emerged as critical personal resources for managing work-related fatigue among the autistic employees in our study. Masking strategies have been linked to fatigue, increased anxiety, psychological distress, and, potentially, suicidal ideation (Alaghband-rad et al., 2023;Miller et al., 2021). Our data supports the idea that, while coping strategies represent personal resources, they also entail associated costs, contrasting with the conventional JD-R theory (Bakker & de Vries, 2021). ...
Background:
Autistic adults are notably underrepresented in the mainstream job market, with only 20% of them worldwide engaged in competitive employment. This underrepresentation carries significant societal and welfare costs. In our study, we explore the impact of competitive employment on autistic adults.
Objective:
We examine the dynamics of personal resources, job demands, resource losses, and resource gains within the context of adult autism and competitive employment. We seek to comprehend the motivating factors related to work and the prerequisites for its sustainment, joining the theoretical frameworks of Job Demands-Resources and Conservation of Resources.
Methods:
We conducted in-depth interviews with eight adults with autism who are employed in competitive roles. Thematic analysis was employed to identify categories and themes, further analyzed using inductive coding.
Results:
Competitive employment was associated with resource gains, including feeling of mastery, improved self-esteem, and enhanced social connectedness. However, participants also reported elevated post-work fatigue as a job demand. Managing post-work fatigue required personal resources, such as stress management strategies and adequate recovery time.
Conclusion:
Our findings highlight the potential of competitive employment to enhance the well-being among autistic adults. To realize these effects, both personal resources and a supportive work environment are crucial.
... Simultaneously, they acknowledge that being autistic in a neurotypical society can lead to challenges with sensory overload, autistic burnout from the load of masking and hiding natural forms of selfregulation to avoid stigmatisation and alienation (Botha & Gillespie-Lynch, 2022). Masking is a term used by neurodiversity advocates to describe the suppression of aspects of self and identity so that an individual appears 'normal', using conscious or unconscious means (Miller et al., 2021). Neurodiversity advocates proclaim that any support provided by health professionals aimed to change autistic people according to neurotypical norms is wrong and compels masking behaviours. ...
... Autistic burnout can be the result of masking and can have detrimental impacts on the mental health, QoL, and self-worth of autistic people (Mantzalas et al., 2022). An online survey study by Miller et al. (2021) explored experiences and views of masking in autistic people (n = 144), neurodivergent people without an autism diagnosis (n = 49), and neurotypical people (n = 45). Thematic analysis revealed that while some aspects of masking appear to be specific to the autistic experience (i.e. ...
Introduction
Supporting daily living skill (DLS) development for autistic people is a component of occupational therapy practice. DLSs are essential for an increased quality of life (QoL), independent living, and community participation. Autistic young people experience poorer outcomes in terms of QoL and independent living than non‐autistic peers. Finding a balance between targeted DLS support to maximise independent living and improve QoL, while avoiding attempts to ‘normalise’ or ‘change’ autistic people, presents as a dilemma for therapists striving to align with neurodiversity‐affirming practice.
Methods
This theoretical paper explored literature pertaining to DLS and the neurodiversity movement in the context of occupational therapy values and the Canadian Model of Occupational Participation. Consideration of whether targeted DLS support is neurodiversity‐affirming or whether occupational therapists are compelling autistic people to mimic behavioural norms perceived by society was discussed.
Results
DLSs are an important factor for maximising QoL, regardless of neurotype. Occupational therapy values align with the core tenets of the neurodiversity movement, and occupational therapists are equipped with the values and skills to support the development of DLSs utilising affirming practice.
Conclusion
Occupational therapists should critically reflect on their practice to ensure alignment with the professions core values and recent occupational therapy models, to ensure affirming practice. Further research investigating DLS and neurodiversity‐affirming practice would benefit occupational therapists striving to align with neurodiversity‐affirming practice.
Consumer and Community Involvement
No consumer or community involvement. Consumers have been considered throughout the development of this paper through their representation in the literature. This involved a process of reviewing the literature and considering it in the scope of the questions and how occupational therapy sits within the neurodiversity movement.
PLAIN LANGUAGE SUMMARY
It is important to help autistic people to learn to do everyday things. Everyday things include activities like showering, cleaning, and cooking. These things are important so that autistic people can live on their own. It has shown that autistic young people are less likely to be able to do everyday activities on their own. It is important that therapists help autistic people learn how to do everyday things; however, do not try and change who they are. This is because completing everyday activities is an important part of QoL for all people.
... Exploring the experiences of people in the workplace through PNA and/or first-person narratives would potentially add to the body of literature and provide an avenue for hiring managers, supervisors, team leaders, and human resources personnel to better understand the value of neurological individuality to the advancement of innovation in the workplace (Brînzea, 2019;Kirby & Smith, 2021;Krzeminska et al., 2019). If neurodiverse individuals use camouflaging or masking techniques, researchers could expand the inquiry further by creating a second research question such as: "What role does camouflaging (or masking) play in the life of a person" (Hull et al., 2020;Miller et al., 2021;Schuck et al., 2024). ...
... Such individuals often engage in protective behaviors like camouflaging and compensation, which is the use of strategies to minimize the appearance of "difference" in social situations (Hull et al., 2020). Similarly, masking is a technique used to, as described by Miller et al. (2021) and Kidwell et al. (2023), appear neurotypical to avoid possible stigma and ostracizing. This experience of camouflaging or masking is universal, in that a negative attribution may be placed on a person due to any element of their intersectionality, such as gender, social status or marginalization, orientation, and more. ...
Researchers have explored neurodiversity in terms of gender, gender identity and expression, masking, and more, yet the focus is often on neurodiversity as synonymous with autism. There remains a challenge to expand the body of neurodiversity research that is broader than autism. In my article, neurodiversity will be discussed as an element of the broad human condition, rather than a singular state or condition of impairment isolated to a portion of the population to delineate the paradigm based on neurological variations from medical and social models. This paper was designed to offer a “how to” for conducting research into neurodiversity through an appreciative lens as it serves as an element of human intersectionality, using individual narrative research designs such as autoethnography and Personal Network Analysis (PNA) as tools for inquiry. The potential value of such research is that it may result in calls to action for researchers, practitioners, and educators that serve to lift neurodiversity by gathering stories directly from neurodiverse people to show the common nature of experience shared by all.
... Decreases in behavioral responses with age could also indicate an increased ability to mask sensory responses as children get older. Masking is common in autistic individuals to meet social norms, avoid stigmas associated with autism, and suppress behaviors seen as atypical, including SOR responses [30,34]. ...
Background
Sensory over-responsivity (SOR) is a heightened reaction to environmental stimuli commonly seen in autism spectrum disorder (ASD) which impacts daily functioning. Parent-reported and observed behavioral assessments are used to study SOR, but show limited associations with each other, possibly because they measure different aspects of SOR or because children inhibit their responses during standardized assessments. Physiological measures provide an objective measure of sensory reactivity, and atypical heart rate (HR) responses to aversive stimuli have been shown to be related to SOR in ASD youth. This study aimed to compare how reported and observed measures of SOR predict HR and to examine if the level of reported behavioral inhibition in ASD youth affects how observed SOR behaviors correlate with physiological reactivity.
Methods
Participants were 54 typically developing (TD) and 83 ASD youth, ages 8–17, who completed a standardized behavioral assessment of SOR while electrocardiogram recordings were collected. Participants’ parents also reported on their child’s SOR symptoms and behavioral inhibition.
Results
ASD youth showed lower inter-beat-intervals (IBI; higher HR) across all auditory and tactile stimuli. For ASD youth, parent-reported SOR interacted with observed SOR to predict HR changes across the stimulation periods, indicating that ASD participants whose parents reported they had high SOR in their daily life, and showed high observed SOR in the lab assessment, exhibited reduced HR deceleration (orienting) after the onset of the stimulus and subsequent increased HR acceleration. Finally, we found that ASD participants who had lower parent-reported behavioral inhibition had a stronger correlation between observed SOR behavior and atypical HR responses.
Conclusions
Results support prior findings that increased HR responses to aversive stimuli is related to both ASD and SOR. Furthermore, observed and parent-reported SOR interacted to predict HR, suggesting that a multi-method approach may best capture the extent of SOR for an individual. However, observed SOR measures may be most accurate for ASD youth who are less likely to inhibit their behavioral responses. This study illustrates the importance of integrating multiple measures of sensory reactivity to identify SOR. HR measures of sensory reactivity have the potential to serve as a biomarker of SOR across a diverse range of individuals.
... One specific example of maladaptive parenting addressed in these studies is the forced restriction of ASD-related behaviors. Individuals with ASD often engage in self-stimulation ("stimming") practices as a way to managing sensory overload and anxiety (Miller et al., 2021). Such individuals report that being forced to restrict stimming is one of the most draining aspects of "masking", a common ASD practice which is linked with higher rates of depression, anxiety, trauma, and dissociative episodes in ASD populations (Evans et al., 2024;Hull et al., 2017). ...
... This "double masking" often led to burnout and emotional distress (Barker, 2021;Miller et al., 2021). ...
This study, completed in 2023, explored the intersectional experiences of internalized ableism among transgender autistic adults, addressing a significant gap in understanding how these multiple marginalized identities shape lived experiences. Utilizing Reflexive Thematic Analysis and Interpretive Phenomenological Analysis, the research drew insights from seven participants across the United States and the United Kingdom. To ensure inclusivity, interviews were conducted via diverse modes-live text, video chat, and asynchronous Qualtrics formats-allowing participants to choose the most accessible approach. The study revealed key themes, including struggles with identity, masking, misconceptions about autism, authenticity, community connection, and advocacy. Participants expressed feelings of alienation and the pressure to mask their authentic selves to fit societal expectations, which took a toll on their mental health. Experiences of being misunderstood and stereotyped further compounded feelings of isolation. However, participants also highlighted the empowerment gained through embracing authenticity, finding supportive communities, and advocating for neurodiversity. The findings underscore the complexity of autistic experiences, particularly when intersected with other dimensions such as gender, disability, and socioeconomic status. This research not only illustrates the challenges faced by transgender autistic individuals but also celebrates their resilience and the importance of supportive environments. The study calls for increased awareness and inclusive practices to better support individuals navigating multiple marginalized identities. Findings contribute to ongoing research efforts aimed at fostering a society that values neurodiversity and authentic self-expression.
... The findings of this study suggest that autistic adults feel a pressure to perform and conform to a role that is imposed onto them, with masking a common strategy to alleviate social anxieties (Miller, Rees, and Pearson 2021). It is important to acknowledge that the design of the study could have mirrored this, and interviews may have been performative in nature, impacting responses. ...
Introduction: Autistic people experience mental health difficulties in higher numbers compared to neurotypical people. Within the United Kingdom, many will access psychological therapies through the National Health Service (NHS), but many autistic people report negative experiences (All Party Parliamentary Group on Autism [APPGA] 2019). This study qualitatively examines the lived experiences of autistic people in their psychological therapies.
Method: This research adopts a qualitative approach by using Reflexive Thematic Analysis (RTA) to guide the research process and analysis of data. Eight autistic adults who had received treatment via the NHS were interviewed regarding their experiences of adult psychological therapies and what facilitated or hindered a positive experience.
Findings: Four themes were constructed: ‘doing therapy “right”’, ‘the therapeutic relationship’, ‘what's the point?’ and ‘lack of choice’. The processes between the therapist and client underpinned experiences, with a reciprocal relationship between factors impacting and being impacted by the relationship. Psychological therapies were found to foster feelings of imposition of treatment with little ability to choose one's own pathway to recovery. All participants reported a lack of psychological safety regarding their identities as autistic people and named lack of therapist knowledge of neurodiversity as a barrier.
Implications: Recommendations include therapeutic boundaries and explicit communication of expectations, allowing the client to be themselves and feel able to engage in practical strategies. Tracking progress is also important, alongside attending relevant training delivered by autistic individuals. Implications for policy include offering more sessions to autistic individuals to allow time for rapport building to reduce re-referrals.
... This subtheme concerns the impact of higher education forcing neurodivergent faculty to "mask" or camouflage their neurodivergence through both explicit and implicit means. Masking is known to cause deep harm to neurodivergent individuals (Beck et al., 2020;Cassidy et al., 2020;Miller et al., 2021), making this an unsustainable practice if a university or college is truly trying to cultivate a diverse environment. For example, there is often external pressure to mask as a neurotypical. ...
Neurodivergent individuals are those whose brains engage the world in ways that society considers atypical. As with disabled individuals, they are often un- or underemployed, may need additional accommodations at places of employment, and experience high rates of ableism. While beginning to do a better job in supporting neurodivergent students, academia has often left neurodivergent faculty out of conversations about diversity, equity, and inclusion and often fails to address how faculty can be supported in succeeding while being their full authentic selves. This phenomenological study explores the lived experiences of neurodivergent faculty in U.S. higher education. We conducted 23 qualitative semistructured interviews, coded the transcripts, and organized these codes into themes using a virtual tabletop coding method. We structured the codes into seven themes: (1) neurophobia as systemic oppression (including subthemes obstruction of access and accommodations and impact of enforced masking); (2) navigating the nexus of identities; (3) complexity of outness; (4) labors of communication; (5) “neurophoria” and the brilliance of neurodivergence; (6) community connection and advocacy; and (7) shared wisdom. Across disciplines (i.e., science, technology, engineering, and mathematics, humanities, social sciences), type of faculty role (i.e., tenure track, clinical, adjunct), type of institution (i.e., public vs. private, size), and a variety of other identities (i.e., race, gender, age), there were many shared experiences by participants. Institutions of higher education must be better prepared to support neurodivergent faculty, including integrating models of universal design, removing barriers for accessing accommodations, dismantling expectations of neurotypical communication, and recognizing the many strengths of these faculty.
... These individuals' diversity of thinking can lead to innovation and advantages for society; however, the strengths of neurodivergent people are often overlooked and underutilized (Austin & Pisano, 2017). Furthermore, attempting to make a neurodivergent student act neurotypical and reduce behaviors that are perceived as "atypical" can be detrimental (Miller et al., 2021). Because about two-thirds of students with disabilities spend 80% or more of their school day in the general education setting (NCES, 2024), the next generation of educators must be prepared with a holistic approach to understanding and engaging with neurodivergent students. ...
Neurodivergent students experience the world differently from normative societal standards. Preservice teachers will have neurodivergent students in their classrooms and misinterpretations of behavior may occur. Including the neurodivergent individual’s perspective and voice is imperative in creating inclusive, affirming learning environments. The Neurodivergent student Informed Behavior Support (NIBS) plan provides a systematic, collaborative approach that can help preservice teachers to (a) recognize if a behavior needs to be addressed, (b) identify strategies to support student success, and (c) empower students to be actively involved in the process. This article presents details on using the NIBS plan to bridge the gap between neurodivergent students and their teachers.
... to prevent discrimination towards their condition, whereas neurotypical people mask to prevent more general ridicule. 10 Speaking from my own experience as both a practitioner and a client, I would encourage practitioners to reassure newly diagnosed clients that they can be their authentic selves, and that this is a safe space to unmask. Directly telling a client may help alleviate anxiety, and over time they may begin to develop trust with the ...
A good practice guide on working with neurodivergent clients
... In particular, I expected a challenge to dominant paradigms of pathology, with a focus on embracing neuroqueer positionalities that extend beyond the performative acts of masking (Pearson and Rose 2021;Miller, Rees, and Pearson 2021;Price 2022). ...
This study critically examines the concept of neuroqueering as a counterforce to cisnormativity, heteronormativity, and neuronormativity, drawing insights from Critical Autism Studies, Critical Race Studies, Queer Theory, and Whiteness Studies. Through a brief genealogy of gendered biological constructs-hormones and chromosomes-I first reveal how these constructs have historically been weaponized to reinforce binary gender norms and perpetuate White supremacy. In the second phase of the study, I utilized in-depth surveys to explore how individuals engaging in neuroqueering navigate the intersection of neurodivergence and queerness, with the expectation of observing an integrated, anti-binary self-experience. However, the results revealed that White participants demonstrated a fragmented identity, separating their neurodivergence from their queerness rather than unifying these aspects. This fragmentation underscores the neutrality often ascribed to Whiteness, which enables White individuals to challenge neuronormativity and cisnormativity without critically interrogating their positionality within Whiteness itself. I argue that for neuroqueering to serve as a transformative and decolonial praxis, it must explicitly engage with Whiteness as a racialized identity and challenge its presumed neutrality. By addressing Whiteness alongside cisnormativity and neuronormativity as interlocking systems of oppression, neuroqueering can better realize its potential as a liberatory tool, fostering self-experiences that resist assimilation and dismantle binary norms.
... Relatively free from neurotypical stigma, anime fandom invites 'unmasking' (Pearson and Rose, 2021;Miller et al., 2021), which is a colloquial term in the autistic community for undoing attempts to mirror, copy or fit in with allistic others (Hull et al., 2017;Cage and Troxell-Whitman, 2019;Radulski, 2022). Social interactions can lead to forms of 'hyperfocus' on how and what to communicate and its social appropriateness, which can linger through anxiety, dread, rumination, panic and self-criticism for perceived failures (Black et al., 2023;Quadt et al., 2024). ...
This article explores how anime contributes to the creation of a culture that attracts autistic individuals and supports their lives. We identify three aspects that may explain why it becomes a special interest that is both deeply personal and widely shared: visual tactility, or animation stimming; layers, or moving through estranged worlds; and unmasking, or emerging neurocultures and languages. Tentatively presenting anime as ‘stim culture,’ we uncover new directions in autism and fan culture research.
... Such masking is now actively discouraged due to evidence of resulting adverse outcomes in later life. 30,31 Multiple health conditions occur more frequently in this population, with hypermobility syndromes being particularly prominent. 32 Adults with a neurodivergent condition are more likely to exhibit hypermobility than neurotypical adults, with an odds ratio of 4.51. ...
... Further, more research is needed to explore to what extent non-autistic girls (both neurotypical and neurodivergent, including ADHD) engage in camouflaging behaviors, as well as their respective costs and benefits. For example, in the adult literature, adults of varying neurotypes engaged in camouflaging behaviors and experienced negative impacts, although some behaviors (e.g., sensory suppression) were more specific to autistic people (Miller et al., 2021). More research is also needed to explore how camouflaging in school varies by sex and gender identity. ...
Although autistic females often “camouflage” their autism, few studies examine the degree to which adolescent females demonstrate these behaviors in inclusive school settings. We examined: (a) the nature, extent, and underlying motivation of camouflaging in high school; (b) the extent to which autistic girls’ characteristics related to camouflaging settings, people, benefits, costs, and school supports; and (c) how girls’ open-ended descriptions agreed with closed-ended camouflaging ratings. Using quantitative and qualitative analyses, this study examined the extent, domains, costs, and benefits of autistic females’ school-based camouflaging. Thirty-one autistic female adolescents, all included in general education classrooms, answered rating and interview questions. Autistic females camouflaged most often in general education classrooms and with teachers and neurotypical peers that they did not know well; least often at home or with neurodivergent friends. Later age of diagnosis was associated with more camouflaging and camouflaging costs. Qualitative analyses revealed four themes: autistic identity; negative peer experiences; negative consequences of camouflaging; and value of neurodivergent friends. Some qualitative findings converged with quantitative findings, others diverged. Implications are discussed for research and practice for supporting autistic females in general education school settings.
... As such, masking and consequences led to a poorer diagnostic trajectory, as masking leads to healthcare professionals and immediate supports to miss out on symptoms and experiences that need to be further addressed. This pipeline from intensive masking to mental health difficulties is well established (Alaghband-Rad et al., 2023;Chapman et al., 2022;Miller et al., 2021). However, considering the alignment of neurotypical values and societal values placed on females, these skills soon became transferrable to allow for these participants to get by-until they couldn't. ...
Early diagnosis for autistic youth is critical in improving quality of life. However, diagnosis is typically delayed for assigned females at birth (AFAB) and gender-diverse individuals, with their autism-related struggles being overlooked. The current study utilizes semistructured interviews with autistic adults to explore how gender identity and socialization impact diagnostic odysseys. As such, we examined the following research questions: (1) What are the female and nonbinary experiences of pursuing an autism diagnosis, and how do they provide an alternative narrative to a normative male experience? (2) What was the experience like receiving and coping with an autism diagnosis? Qualitative interviews were conducted with 24 autistic adults identifying as nonbinary, agender, or genderfluid ( n = 14), female ( n = 8), and male ( n = 2). Coding used reflexive thematic analysis, informed by tenants of gender socialization roles and the feminist disability model. Participants reported experiencing clinician bias within the mental health system, being mislabeled, having difficulties navigating the diagnostic system, and masking to compensate prior to diagnosis. This study provides a greater understanding of diagnostic trajectories and the intersection of gender socialization with their coping strategies for navigating life without a diagnosis. This informs future practices in reducing diagnostic biases and the toll of compensatory mechanisms used in the interim.
Lay Abstract
Early diagnosis of autism can greatly improve the lives of those affected. However, for individuals assigned female at birth (AFAB) and those who are gender diverse, this diagnosis often comes much later. This delay is because their autism-related challenges are frequently overlooked by healthcare professionals. Our study aimed to understand how gender identity and social experiences influence the journey to receiving an autism diagnosis. We interviewed 24 autistic adults to learn about their personal experiences. Among them, 14 identified as nonbinary, agender, or genderfluid, 8 as female, and 2 as male. We wanted to know how their gender affected their pursuit of a diagnosis and how they coped with life before and after being diagnosed. Participants shared that they often faced bias from clinicians, were misdiagnosed, and had trouble navigating the diagnostic system. Many also talked about “masking” their autism symptoms to fit in, which was exhausting and challenging. Our findings highlight the unique struggles these individuals face and show how gender socialization plays a role in their experiences. By understanding these diagnostic journeys, we hope to reduce biases in the healthcare system and improve support for AFAB and gender-diverse autistic individuals. This research aims to ensure that future practices are more inclusive and sensitive to the needs of all autistic people, leading to earlier and more accurate diagnoses and better overall support.
... This masking behavior, while perhaps beneficial in some circumstances (Cage & Troxell-Whitman, 2019), is not without costs. These costs include poor mental health outcomes, such as anxiety, low self-esteem, rumination, exhaustion, and burnout (Livingston, Shah, & Happé, 2019;Miller, Rees, & Pearson, 2021). ...
Although more organizations are seeking autistic applicants, autistic people remain in an unemployment crisis. This may be due in part to job interviews, which often implicitly evaluate relational and social skills—an area with which many autistic people struggle. To determine how to better support autistic applicants, we conduct a mixed methods study to identify, from their own perspective, the accommodations that would have the greatest impact on autistic individuals’ interview anxiety and performance. Additionally, we examine differences in interview anxiety and preferred adjustments to the interview process between both autistic and allistic participants and intersectionally across gender. Findings revealed additive effects of neurotype and gender on interview anxiety, with autistic participants reporting higher anxiety than allistic participants, and women reporting higher anxiety than men. Interestingly, despite a small number of notable differences, there were far more similarities between groups regarding preferred interview adjustments. These findings suggest that many adjustments to the interview process may be helpful across neurotypes, although they are perhaps particularly beneficial for alleviating the comparatively higher anxiety levels experienced by autistic applicants. Overall, there is a need to consider how and whether current interview best practices (e.g., standardization and structure) can be adapted to facilitate the inclusion of diverse neurotypes across a range of individual differences. As a starting point, we offer practical guidelines for managers wishing to improve the interview process for autistic and allistic applicants alike and set a foundation for future research.
... GPs were also unfamiliar with the concept of autistic camouflaging or masking, whereby autistic people suppress their natural autistic traits and behaviours to appear non-autistic in order to blend in and be more accepted in dominantly non-autistic society (Alaghbandrad et al., 2023;Miller et al., 2021;Pearson & Rose, 2021). My findings corroborate other research which indicates that the current conventional methods and measurements of autism are biased towards males potentially impeding the recognition of autistic females (Brickhill et al., 2023;D'Mello et al., 2022;McCrossin, 2022). ...
Background: Studies from around the world have shown that autistic adults often experience multiple barriers to accessing healthcare and report more barriers to healthcare than non-autistic adults. Autistic adults have also consistently reported experiencing challenges in both physical and mental well-being, coupled with a diminished life expectancy when contrasted with their non-autistic counterparts. Yet, we know little about the experiences of Australian autistic adults in general practice settings.
Aim: To develop an in-depth understanding of the factors contributing to the care that autistic adults receive in Australian general practice settings – from the perspectives of autistic adults themselves, their supporters, and general practitioners (GPs).
Methods: I completed in-depth semi-structured interviews with 34 autistic adults, four supporters and 15 GPs in their preferred method (i.e., Zoom, telephone, email). Most autistic adult participants were white (n = 28; 82%), female (n = 24; 70%) and ranged in age from 26 to 73 years (M = 41.93, SD = 11.48). Most supporters were white (n = 3; 75%) and all were women (n = 4; 100%), ranging in age from 51 to 72 years (M = 61, SD = 7.8). Most GP participants were white (n = 12; 80%), female (n = 11; 73%), ranged in age from 28 to 60 years (M = 45.4, SD = 7.6), had worked as a GP for 5 – 25 years, and had not received any formal autism specific training prior to obtaining their primary qualification (n = 10; 66%), or post obtaining their primary qualification (n = 11; 73%). I collaborated with a ‘Community Council’ of ten Australian autistic adults from a range of diverse age, gender, employment, and educational backgrounds in the development of the research aim, interview questions, and participant-facing materials. During the interviews, autistic and supporter participants were asked about six areas: GP consultation experiences, waiting at the GP clinic, disclosure of an autism diagnosis and seeking an [autism] assessment referral, accessing GP services during COVID-19 and what participants want GPs to know about autism and do differently. During interviews with GPs, I also asked about their knowledge and perceptions of, and attitudes towards, autistic people; the clinic environment; diagnosing autism; impact of
COVID-19 restrictions; and GP education and training. I analysed the interview transcripts using reflexive thematic analysis. I also used a neuro-affirming and critical autism studies approach to inform my analysis, as well as an epistemic justice framework to preface my conclusions.
Results: My thesis comprises four distinct research studies aimed at elucidating the general practice experiences of autistic adults. The first study (Chapter 2) was a systematic literature review to delineate barriers and facilitators to healthcare access for this population. I identified a range of challenges encompassing provider-level factors including inadequate knowledge and biased attitudes, and system-level issues such as limited accessibility. Additionally, I highlighted the scarcity of evidence-based health supports tailored to autistic adults. These findings were confirmed and extended by the results of my empirical work (Chapters 5 – 7). In Chapter 5, I present the results from the interview study on GPs’ perceptions of autistic people and how these perceptions impact healthcare interactions, as reported by autistic adults, their supporters, and GPs. In Chapter 6, I examine how patient-provider interactions in primary care settings affect autistic patients’ physical health specifically. Finally, in Chapter 7, I further interrogate the responses of autistic adults, their supporters and GPs to understand autistic experiences of seeking care in general practice. I unveiled pervasive negative interactions and outcomes experienced by autistic adults. I also revealed a notable lack of contemporary knowledge and subconscious biases among GPs about autism and being autistic, which appeared to impact healthcare provision. Similarly, supporters exhibited gaps in understanding, exacerbating the challenges faced by autistic adults in general practice settings. Limited contemporary understandings of ‘autism’ and prejudiced attitudes led to undiagnosed or misdiagnosed physical and mental health conditions, causing medical gaslighting and iatrogenesis. Autistic adults described feeling objectified and disempowered as a result of these issues when interacting with GPs in Australian general practice settings.
Conclusion: My research challenges medical interpretations of ‘autism’ and demonstrates epistemic violence in the Australian general practice experiences of autistic adults. Pernicious ignorance and epistemicide of ‘autism’ interpretations, coupled with knowledge-based epistemic violence within healthcare, including general practice, result in testimonial silencing and smothering. To ensure the healthcare needs, preferences, and rights of autistic adults are upheld and that epistemic justice is promoted, I advocate for epistemic respect and recognition through contemporaneous neuro-affirming autistic-led education and training for general practice staff and medical students. My findings underscore the imperative for comprehensive reforms in healthcare practices and provider education and training to bridge the existing gaps and cater effectively to the healthcare needs and rights of autistic adults.
... 3,8 The growing evidence that masking sensory experiences is prevalent in autistic individuals is concerning, given masking's demonstrated effects on anxiety, depression, burnout, and suicidality. [54][55][56] All of this has important implications for intervention. Whereas traditional approaches to intervention may have the goal of ensuring that autistic individuals have no apparent sensory needs (e.g., appearing neurotypical), it is more important to ensure that autistic individuals have the opportunity to experience meaningful and authentic sensory experiences and access to physical and social environments that are understanding of their sensory experiences. ...
... Currently, societal expectations and some clinical therapies promote "proper" ways of functioning that lead many autistic individuals to mask their autistic traits to operate in accordance with neurotypical norms (Kapp et al., 2019). Examples of masking include making eye contact even if it feels uncomfortable, refraining from discussing special interests, resisting the impulse for self-stimulatory behaviors, and mimicking non-verbal communication and body language (Miller et al., 2021). Some therapists impose their assumptions of the "correct" ways of sensing, moving, or communicating on autistic clients without stopping to reflect on whether those behaviors are actually in alignment with their neurology and whether that person can or wants to do them differently. ...
... Autistic women are also more likely to have chronic pain conditions (Asztély et al., 2019), neurological conditions (Da Walt et al., 2021) and be at higher risk of dying in hospital than non-Autistic people and Autistic men (Akobirshoev et al., 2020). These health disparities could potentially be explained by Autistic women and girls being more likely to experience societal stigma for presenting as their authentic selves, resulting in "Autistic masking", which is energy intensive (Miller et al., 2021) and contributes to women and girls going unrecognised as Autistic or not receiving the support they need (Wood-Downie et al., 2021). Furthermore, when Autistic people become parents, particularly to Autistic children, they may be subjected to involuntary social work intervention based on their "perplexing presentations" and ableist notions of what constitutes "good motherhood" (Benson, 2023), although variation in healthcare systems can potentially reduce this stigma (Ellis et al., 2023). ...
Within Autism research, many studies fail to meaningfully involve Autistic people. In this chapter, we report on the co-development of a successful funding application where we specifically aimed to involve Autistic people with and without relevant professional experience as partners from the outset and throughout the research. This includes how Aimee’s online consultation with Autistic people who had been pregnant resulted in a complete shift in the study’s boundaries from considering maternity only, to reproductive health across the life course. Next, we detail the in-depth discussions with Autistic community leaders (Kathryn and Willow) and an Autistic midwife (Karen) that shaped the study’s governance and research design prior to submission. Following this, we report the study’s approach to using creative research methods in an individually tailored way, and how this is an appropriate and ethical strategy when working with a heterogeneous group with differing communication needs and preferences for how they would like to take part in research. Finally, we then identify facilitators that may enable Autism researchers to co-develop ethical and participatory research funding applications. We conclude that participatory approaches which acknowledge Autistic strengths and centre the Autistic community have the best likelihood of the research benefitting Autistic people.
... Exploratory analyses revealed that each of the four types of social strategies identified in the Compensation Checklist [15] was differently associated with well-being. First, masking was associated with decreased well-being and increased loneliness, consistent with previous theoretical and qualitative research suggesting that conscious suppression of innate autistic behaviors leads to burnout and a loss of sense of true self [18] and an emotional and physical toll [19]. Second and third, shallow compensation was not significantly associated with either well-being or loneliness, but deep compensation was positively associated with well-being but not with loneliness. ...
Background/Objectives: Autistic people employ various social strategies to form and maintain interpersonal relationships in their daily environments. These strategies can help autistic people with social interactions (leading to self-perceived efficacy of using social strategies), but can also lead to cognitive fatigue (self-perceived effort of using social strategies). However, previous studies have focused primarily on self-perceived effort, overlooking the self-perceived efficacy of using social strategies, and the balance between self-perceived effort and efficacy. To address this gap, this study examined the impact of autistic people’s use of social strategies on their well-being, focusing on self-perceived effort, self-perceived efficacy, and their interaction effect. Methods: An online survey was conducted among self-reported autistic people in Japan aged 18–65 years, using a modified Compensation Checklist. Data from 104 self-reported autistic participants were analyzed using linear regression. Results: High self-perceived effort in using social strategies was negatively associated with well-being, whereas high self-perceived efficacy was positively associated with well-being. The interaction effect between effort and efficacy was not significant. These results were supported even when loneliness was used as an index of social well-being. Additionally, the number of strategies used by an autistic person was positively associated with well-being. Conclusions: This study highlights the double-edged effect of autistic people using social strategies, and that using a broader repertoire of social strategies may improve the well-being of autistic people. These findings call for a nuanced approach by researchers and clinicians considering both the positive and negative aspects of using social strategies.
... 35 It is therefore plausible that autistic women are overrepresented in ED populations, as a consequence of societally reinforced masking behavior. 71 While we are unable to consider masking as a potential confounder in the present study, this interpretation is consistent with findings that masking may delay the detection and diagnosis of autism, 68,72,73 it is likely that this explanation alone apportions too much responsibility on autistic girls and women to make themselves visible to clinicians 3 and does not sufficiently address the need for greater clinical knowledge of autism in girls and women. What is clear, however, is that our findings describe a trajectory of missed opportunities in the detection and diagnosis of autistic women, both in early childhood and while receiving professional attention for an ED. ...
With the NHS Long Term Workforce Plan requiring clinical placements to accommodate up to 50% more learners, the pressure on clinical educators to maintain high-quality learning environments is becoming increasingly intense. Neurodivergent learners face significant barriers in busy, fast-paced environments, making the cultivation of supportive and adaptive learning spaces essential to ensure all learners have the opportunity to thrive in a healthcare system under immense demand. This article is aimed at empowering clinical educators to lead inclusive placements through implementation of advanced supervision skills to support neurodivergent learners. These are presented as 12 practical tips, each aligned with the 12 Practitioner Values for fostering inclusive professional relationships. These are grouped under five overarching pillars to provide an actionable framework to address both the moral imperative to meet diverse learning needs as well as the systemic necessity of building a more inclusive workforce.
In this article, I extend the existing theoretical foundation on the mental load to the realm of academia. Using autoethnographic analysis paired with femme theory (Hoskin 2017), I argue that my experience of the mental load within academia distinctly illustrates the denigration of femininity and feminine traits while simultaneously relying upon them for the success and functionality of the workplace. As a result of sharing these autoethnographic vignettes and highlighting these experiences, I advocate for mechanisms to intervene into these phenomena, which impact the professional climate and experience for feminized academics. Ultimately, I highlight a few immediate practical applications for examining our own work cultures and advocating for cultures that are less femmephobic and which more readily recognize the value and contributions of feminized labor including the critical role of the mental load.
Nos últimos anos, houve um aumento tímido de matrículas de estudantes autistas no ensino superior, cuja estrutura é desafiadora para essas pessoas que possuem maneiras diversas de lidar com mudanças, de comunicar e de interagir. Este estudo investigou os desafios enfrentados por 19 estudantes autistas em uma universidade brasileira objetivando conhecer os ajustes razoáveis que contribuam para o seu sucesso no ensino superior. A coleta de dados ocorreu por meio de entrevistas semiestruturadas. A análise dos dados assumiu os pressupostos teórico-metodológicos de Norbert Elias como referência. Os resultados apontam que a maioria dos estudantes foram diagnosticados na fase adulta, o que gera sentimentos conflitantes de aceitação e de identificação com a condição de ser estudante com autismo. O conhecimento da condição de autista traz implicações nos seus modos de participar na vida universitária, impelindo a busca por suportes que melhorem as relações com docentes e colegas de classe. Vivenciam o sentimento de alívio e de auto aceitação de sua condição, ao mesmo tempo em que ressentem receio de ser estigmatizado como pessoa incapaz. Por conta dos estigmas, estereótipos e preconceitos sobre o autismo, esses estudantes se mostraram relutantes em revelar o seu diagnóstico, embora esse fosse o pré-requisito para acessar os apoios e suportes necessários na estrutura e modo de organização do ensino superior. Os estudantes anseiam por mais debates e informações sobre o autismo, principalmente na voz de pessoas autistas. Os estudantes fizeram algumas sugestões e críticas em relação aos apoios recebidos. Evidenciamos, finalmente, a necessidade de pesquisas focadas nas mulheres com autismo.
Most autistic adolescents experience anxiety. Interoception, defined as one’s ability to detect and interpret bodily signals, might contribute to this. The aim of this exploratory, qualitative study was to gain a better understanding of interoceptive experiences in autistic adolescents and how this relates to anxiety. Semi-structured 1:1 interviews were conducted with 13 UK-based, autistic adolescents, aged 14–17 years, who reported experiencing significant, day-to-day anxiety. Interviews were analysed using a reflexive thematic analysis approach. Interoception appeared relevant to experiences of anxiety in most participants, although this influence was exerted through various routes. While hypoawareness of interoceptive signals led to a reduced ability to detect and regulate anxiety, hyperawareness became overwhelming and anxiety-inducing. Overly negative evaluations of interoceptive signals, including catastrophising about the signals indicating danger, also triggered anxiety. Relationships between interoception and anxiety appeared bidirectional, with anxiety also affecting interoceptive awareness and evaluation. Interoceptive experiences were variable both across and within participants, with factors such as arousal and cognitive overload affecting experiences. Future research should focus on assessing the feasibility of interventions based on the mechanisms identified here.
Lay abstract
Anxiety is common in autistic adolescents. The detection and interpretation of signals coming from inside the body (e.g. heartbeat and hunger) is assumed to be related to both anxiety and autism. We interviewed 13 autistic 14- to 17-year-olds who reported experiencing significant anxiety, to explore the role that bodily signals played in their experiences of anxiety. Across most participants, there did appear to be a relationship, although the exact way it was related varied. When participants were very aware of bodily signals, they could become overwhelming, but if they were not aware at all, then it was difficult for them to notice themselves getting anxious until it was too late. If participants interpreted these signals negatively, for example, assuming the signals meant something was wrong with their body, they were also more likely to feel anxious. Whether participants were aware or negatively evaluated these signals was very variable and appeared to be context-dependent.
The chapter presents an original interpretation of Nietzsche’s concept of “amor fati” (love of fate), as expressed in The Gay Science, particularly GS 276. The author argues that Nietzsche’s “fate” is not a general notion of accepting everything as necessary, but rather his specific “passion for knowledge.” This passion is depicted as an irrepressible force, which he struggles to embrace due to its potentially destructive effects. Through close readings of surrounding passages in GS Book IV, the author explores how Nietzsche attempts to justify his passion for knowledge by appealing to naturalistic metaphors, such as “new suns,” and through the virtue of honesty (Redlichkeit). The author’s reading is contrasted with other scholarly interpretations, suggesting that many overemphasise the literal meaning of Nietzsche’s words. Ultimately, the chapter situates Nietzsche’s personal struggle to affirm his fate within the broader context of his development as a philosopher.
Neurodivergent people experience constant systemic oppression and discrimination that causes trauma. Our current neuro-normative society benefits those who are considered “normal” and harms those who are considered “abnormal.” Neurodivergent counselors also experience discrimination within the world of counselor education. This chapter highlights the importance of increasing neurodiversity-affirming counselor education and provides concrete strategies to do so. Actionable steps include counselor educators' self-reflection on biases, putting neurodiversity-affirming strategies into practice in the classroom, and reassessing the criteria used to evaluate counselor-in-training performance. Specific examples are demonstrated in a case study of a neurodivergent counselor-in-training providing services for a neurodivergent client. A paradigm shift to be neurodiversity-affirming in counselor education practices is crucial for promoting trauma-informed gatekeeping in the counseling world.
In this chapter I describe changes in diagnostic classification, and research investigating biological and environmental factors that have been associated with an increased likelihood of autism. I describe theoretical and empirical work on early development in autism, and discuss the rapidly increasing importance of research carried out within the neurodiversity paradigm.
There is ample evidence that individual‐level cognitive mechanisms active during language learning and use can contribute to the evolution of language. For example, experimental work suggests that learners will reduce case marking in a language where grammatical roles are reliably indicated by fixed word order, a correlation found robustly in the languages of the world. However, such research often assumes homogeneity among language learners and users, or at least does not dig into individual differences in behavior. Yet, it is increasingly clear that language users vary in a large number of ways: in culture, in demographics, and—critically for present purposes—in terms of cognitive diversity. Here, we explore how neurodiversity impacts behavior in an experimental task similar to the one summarized above, and how this behavior interacts with social pressures. We find both similarities and differences between autistic and nonautistic English‐speaking individuals, suggesting that neurodiversity can impact language change in the lab. This, in turn, highlights the potential for future research on the role of neurodivergent populations in language evolution more generally.
Background
Working from home (WFH) is becoming more common, but little is known about how it specifically affects neuro-divergent workers’ psychological and occupational well-being.
Aims
This review aimed to explore the experiences of neuro-divergent staff WFH, including the challenges they face; the potential benefits of homeworking for this specific population and the support systems they require.
Methods
We searched six electronic databases, as well as reference lists of included papers, one preprint server and Google, for literature on neuro-divergent workers’ experiences of WFH. Results were synthesized using thematic analysis.
Results
We reviewed 25 studies (mostly based on data collected during the coronavirus disease 2019 pandemic), finding very little research statistically analysing the impact of WFH on well-being or productivity, or comparing the impact of WFH across neuro-divergent and neuro-typical populations. The (mostly qualitative) findings showed that neuro-divergent participants described various benefits and challenges of the sensory environment at home; the reduction of commuting; increased flexibility and lack of routine when homeworking; the reduction of ‘masking’ behaviours; lack of in-person social contact and increased use of technology.
Conclusions
The findings emphasize the importance of not assuming a one-size-fits-all approach to homeworking and suggest managers should be mindful of workers’ individual preferences for working whilst ensuring that all employees are appropriately supported. The results can inform future research and provide insights for employers to help them create more inclusive work environments.
Goal setting is integral to the provision of effective support, but little is known about community perspectives on support goals for autistic children. A total of 41 autistic adults, 50 parents of autistic children and 31 clinical professionals living in New Zealand and Australia completed open-ended survey questions regarding their perceptions of support goals for young autistic children. Reflexive thematic analysis resulted in five overarching themes related to early support goals: (a) neurodiversity affirming, (b) change the environment, not the child, (c) helping adults to support autistic children, (d) quality of life and (e) respect boundaries. The perspectives of autistic adults, parents and professionals were mostly aligned.
This chapter reflects on research on neurodiversity. Specifically, these pages probe how the authors (attention deficit hyperactivity disorder and autistic) interface with existing academic and research structures—both personal experience and external evaluation. The authors describe their research processes and the methods they use when attempting to navigate academic cultural expectations and values without compromising their positionality as community members and activists. They examine and explain the ways in which neurodivergent traits and experiences have—or fail to have—subjective academic desirability. This chapter demonstrates that neurodiversity research is furthered by the inclusion of neurodivergent researchers and community members, which necessitates increasing critical support of academics and researchers from neurodivergent backgrounds.
A letter to the Editor reflecting on the cessation of the author's nursing education and the considerations for students who may mask or camouflage their neurodiversity in clinical placements.
The use of emotion recognition technologies in the workplace is expanding. These technologies claim to provide insights into internal emotional states based on external cues like facial expressions. Despite interconnections between autism and the development of emotion recognition technologies as reported in prior research, little attention has been paid to the particular issues that arise for autistic individuals when emotion recognition technologies are implemented in consequential settings like the workplace. This article examines recent literature on autism and on emotion recognition technologies to argue that the risks of the use of emotion recognition technologies in the workplace are heightened for autistic people. Following a brief overview of emotion recognition technologies, this argument is made by focusing on the issues that arise through the development and deployment of emotion recognition technologies. Issues related to the development of emotion recognition technologies include fundamental problems with the science behind the technologies, the underrepresentation of autistic individuals in data sets and the problems with increasing this representation, and annotation of the training data for the technologies. Issues related to implementation include the invasive nature of emotion recognition technologies, the sensitivity of the data used, and the imposition of neurotypical norms on autistic workers through their use. The article closes with a call for future research on the implications of these emergent technologies for autistic individuals.
Lay abstract
Technologies using artificial intelligence to recognize people’s emotional states are increasingly being developed under the name of emotional recognition technologies. Emotion recognition technologies claim to identify people’s emotional states based on data, like facial expressions. This is despite research providing counterevidence that emotion recognition technologies are founded on bad science and that it is not possible to correctly identify people’s emotions in this way. The use of emotion recognition technologies is widespread, and they can be harmful when they are used in the workplace, especially for autistic workers. Although previous research has shown that the origins of emotion recognition technologies relied on autistic people, there has been little research on the impact of emotion recognition technologies on autistic people when it is used in the workplace. Through a review of recent academic studies, this article looks at the development and implementation processes of emotion recognition technologies to show how autistic people in particular may be disadvantaged or harmed by the development and use of the technologies. This article closes with a call for more research on autistic people’s perception of the technologies and their impact, with involvement from diverse participants.
Camouflaging refers to strategies used by autistic people to mask or hide social difficulties. The current study draws on Social Identity Theory to examine the relationship between camouflaging and autism-related stigma, testing the hypothesis that camouflaging represents an individualistic strategy in response to stigma. Two hundred and twenty-three autistic adults completed an online survey measuring perceived autism-related stigma, individualistic and collective strategies, camouflaging and mental wellbeing. Results indicated that higher camouflaging was positively associated with autism-related stigma and both individualistic and collective strategy use. Autism-related stigma was associated with lower wellbeing however this relationship was not mediated by camouflaging. These findings demonstrate how stigma contributes to camouflaging and highlight the complexities of navigating autistic identity while still camouflaging.
Camouflaging is a social phenomenon operating within everyday social interactions of autistic and non-autistic people. The current study explored autistic adults’ camouflaging in an everyday social context via interpersonal process recall methodology (Kegan, 1969). A total of 17 autistic adults (8 females, 6 males and 3 agender/gender-neutral individuals) participated in a 10-min controlled social task designed to replicate a common day-to-day social situation. Participants then watched a video of their interaction with a researcher, actively identifying instances of camouflaging and discussing their experiences of camouflaging. Using thematic analysis, four themes were generated: (1) a strong desire for, yet uncertainty in, securing social acceptance and connection; (2) camouflaging, developed over time, as a means to achieve social acceptance and connection; (3) experiencing intrapersonal and interpersonal camouflaging consequences during social interactions; and (4) authentic socialising as an alternative to camouflaging. These findings are discussed with reference to the existing literature on stigma management outside the field of autism.
Lay abstract
Many autistic people report that, despite personal costs, they use strategies to hide their autistic characteristics or appear non-autistic at work, school or university, when speaking with health professionals, or while socialising with certain friends and family members. These strategies are often referred to as camouflaging. This study explores camouflaging during everyday social interactions. A total of 17 autistic adults were filmed taking part in a common everyday social situation – a conversation with a stranger. They then watched the video of this conversation with a researcher and answered questions about camouflaging. These autistic people told us that they (1) had a strong desire to socialise with and be valued by other people but, because of negative past experiences, they often felt unsure about their ability to do so; (2) used camouflaging to help them to socialise and be valued by others; (3) experienced negative consequences when camouflaging (e.g. fatigue, anxiety and difficulties in friendships); and (4) sometimes socialised in more autistic ways instead of camouflaging. This study shows us how autistic people often change their behaviour because of the way they are treated by nonautistic people and that autistic people may benefit from programmes that help them to socialise in more authentically autistic ways, but only if their autistic social behaviour is met with understanding and acceptance from non-autistic people.
Background
There is inconsistent evidence for a clear pattern of association between ‘camouflaging’ (strategies used to mask and/or compensate for autism characteristics during social interactions) and mental health.
Methods
This study explored the relationship between self-reported camouflaging and generalised anxiety, depression, and social anxiety in a large sample of autistic adults and, for the first time, explored the moderating effect of gender, in an online survey.
Results
Overall, camouflaging was associated with greater symptoms of generalised anxiety, depression, and social anxiety, although only to a small extent beyond the contribution of autistic traits and age. Camouflaging more strongly predicted generalised and social anxiety than depression. No interaction between camouflaging and gender was found.
Limitations
These results cannot be generalised to autistic people with intellectual disability, or autistic children and young people. The sample did not include sufficient numbers of non-binary people to run separate analyses; therefore, it is possible that camouflaging impacts mental health differently in this population.
Conclusions
The findings suggest that camouflaging is a risk factor for mental health problems in autistic adults without intellectual disability, regardless of gender. We also identified levels of camouflaging at which risk of mental health problems is highest, suggesting clinicians should be particularly aware of mental health problems in those who score at or above these levels.
Camouflaging includes strategies used by individuals to mask or hide autistic traits. Research has shown that both autistic and neurotypical individuals engage in camouflaging and that there may be sex differences in the reasons for camouflaging in autistic adults. The purpose of this qualitative study was to extend previous research on the lived experience of camouflaging through exploring camouflaging motivations and consequences in autistic and neurotypical adolescents through both questionnaires (n = 132) and semi-structured interviews (n = 19). Results revealed trends in camouflaging motivations and consequences by diagnosis and sex, as well as by sex within the autistic group. These findings further inform our understanding of camouflaging and why it may be reported as particularly detrimental for autistic females.
Fombonne’s (2020) editorial is a thought‐provoking appraisal of the literature on ‘camouflaging’, whereby some autistic people mask or compensate for their autistic characteristics as an attempt to fit in and to cope with disabilities under neurotypical social norms. Fombonne (2020) highlights three issues of contention: (a) construct validity and measurement of camouflaging; (b) camouflaging as a reason for late autism diagnosis in adolescence/adulthood; and (c) camouflaging as a feature of the ‘female autism phenotype’. Here, we argue that (a) establishing construct validity and measurement of different aspects of camouflaging is warranted; (b) subjective experiences are important for the differential diagnosis of autism in adolescence/adulthood; and (c) camouflaging is not necessarily a feature of autism in female individuals – nevertheless, taking into account sex and gender influences in development is crucial to understand behavioural manifestations of autism. Future research and clinical directions should involve clarification of associated constructs and measurements, demography, mechanisms, impact (including harms and benefits) and tailored support.
Camouflaging involves masking and/or compensating for autistic characteristics and has been identified in autistic individuals through a variety of different methods. Individual variation in the extent, processes and outcomes of camouflaging has been reported in autistic adults, and there has been some investigation of camouflaging by autistic adolescents. This study was conducted to better understand how some of these individual differences emerge, by examining potential mechanisms (theory of mind, executive function, intelligence quotient and age) involved in camouflaging by 58 autistic adolescents aged 13–18 years (29 females, 29 males). Fewer executive function difficulties predicted greater use of total camouflaging strategies and the compensation subscale, but not the masking or assimilation subscales; no other predictors reached statistical significance. These findings suggest that individual differences in executive function ability may underlie variation in the use of camouflaging by adolescents. The total variance explained in the model was small, suggesting the need to examine other factors which may underpin camouflaging. The implications of this finding for the relationship between camouflaging and well‐being are discussed, along with the distinction between attempts to camouflage and the efficacy of those attempts.
Lay Summary
Camouflaging involves hiding your autism or finding ways around difficulties in order to fit in during social situations. This study found that autistic teenagers with good executive function abilities camouflage their autism more than those who struggle with executive function (which includes planning, goal‐direction and memory). This may have implications for teenagers' mental health and their social functioning.
There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand how autistic individuals make sense of their own autism and experience the stigma attached to autism. The study used critical grounded theory tools. Participants (N = 20) discussed autism as central to their identity, and integral to who they are. While participants thought of autism as value neutral, they expressed how society confers negative meanings onto autism, and thus, them. The findings also indicate that different understandings of autism confer different levels of stigma. Participants expressed constant exposure to stigma and managed this stigma in different ways. Such methods included reframing to more positive understandings of autism, the reclamation of language, and using concealment and disclosure strategically. The implications of these findings are discussed further in the article.
• Points of interest
• Autistic research participants consider their autism to be value neutral – akin to any other feature like race or hair colour.
• Participants feel that society sees their autism as being a bad trait to have.
• Participants struggled with the tension in how they see themselves, versus how they believe society sees them.
• Participants are caught between disclosing that they are autistic and concealing it, but feel they are treated negatively either way.
• Participants use the word “autistic” to reclaim autism from stigma, and to reframe peoples understandings of autism to be less negative.
This paper highlights the role of terminology, such as camouflage and masking, commonly used in autism research. The author suggests researchers question assumptions around language commonly used to check it is fully representative of the autistic position. Being autistic often means being very literal. This literality means it is very important for researchers-particularly non-autistic researchers-to design research questions in a way that will gather accurate information often underlying autistic understanding. Words are powerful tools and lead to beliefs and positions held. Adaptive morphing in autism (currently referred to as camouflage or masking) infers a response, not of deceit, but one that is biological and not necessarily chosen. The author of this paper suggests masking, as a choice to deceive, is quite different from adaptive morphing for safety.
This study investigated sex/gender differences in camouflaging with children and adolescents (N = 84) with and without an autism diagnosis/increased levels of autistic traits using two conceptualisations/operationalisations of camouflaging. A significant group-by-gender interaction using ANCOVA, with the covariate of verbal IQ, reflected similar levels of social reciprocity in autistic and neurotypical females, whereas autistic males had lower reciprocity than neurotypical males. Autistic females also had higher reciprocity than autistic males, despite similar levels of autistic traits (behavioural camouflaging). Additionally, autistic males and females had similar theory of mind skills, despite females having increased reciprocity (compensatory camouflaging). These findings provide evidence of increased camouflaging in autistic females, which may contribute to delay in the recognition of difficulties and provision of support.
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Background:
Although autistic adults often discuss experiencing "autistic burnout" and attribute serious negative outcomes to it, the concept is almost completely absent from the academic and clinical literature.
Methods:
We used a community-based participatory research approach to conduct a thematic analysis of 19 interviews and 19 public Internet sources to understand and characterize autistic burnout. Interview participants were autistic adults who identified as having been professionally diagnosed with an autism spectrum condition. We conducted a thematic analysis, using a hybrid inductive-deductive approach, at semantic and latent levels, through a critical paradigm. We addressed trustworthiness through multiple coders, peer debriefing, and examination of contradictions.
Results:
Autistic adults described the primary characteristics of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout. Autistic adults described negative impacts on their health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people and described acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking as associated in their experiences with recovery from autistic burnout.
Conclusions:
Autistic burnout appears to be a phenomenon distinct from occupational burnout or clinical depression. Better understanding autistic burnout could lead to ways to recognize, relieve, or prevent it, including highlighting the potential dangers of teaching autistic people to mask or camouflage their autistic traits, and including burnout education in suicide prevention programs. These findings highlight the need to reduce discrimination and stigma related to autism and disability.
Lay summary:
Why was this study done?: Autistic burnout is talked about a lot by autistic people but has not been formally addressed by researchers. It is an important issue for the autistic community because it is described as leading to distress; loss of work, school, health, and quality of life; and even suicidal behavior.What was the purpose of this study?: This study aimed to characterize autistic burnout, understand what it is like, what people think causes it, and what helps people recover from or prevent it. It is a first step in starting to understand autistic burnout well enough to address it.What did the researchers do?: Our research group-the Academic Autism Spectrum Partnership in Research and Education-used a community-based participatory research approach with the autistic community in all stages of the study. We analyzed 9 interviews from our study on employment, 10 interviews about autistic burnout, and 19 public Internet sources (five in-depth). We recruited in the United States by publicizing on social media, by word of mouth, and through community connections. When analyzing interviews, we took what people said at face value and in deeper social context, and looked for strong themes across data.What were the results of the study?: The primary characteristics of autistic burnout were chronic exhaustion, loss of skills, and reduced tolerance to stimulus. Participants described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout. From this we created a definition:Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.Participants described negative impacts on their lives, including health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people. People had ideas for recovering from autistic burnout including acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking.How do these findings add to what was already known?: We now have data that autistic burnout refers to a clear set of characteristics, and is different from workplace burnout and clinical depression. We have the start of a model for why autistic burnout might happen. We know that people have been able to recover from autistic burnout and have some insights into how.What are the potential weaknesses in the study?: This was a small exploratory study with a convenience sample. Although we were able to bring in some diversity by using three data sources, future work would benefit from interviewing a wider range of participants, especially those who are not white, have higher support needs, and have either very high or very low educational attainment. More research is needed to understand how to measure, prevent, and treat autistic burnout.How will these findings help autistic adults now or in the future?: These findings validate the experience of autistic adults. Understanding autistic burnout could lead to ways to help relieve it or prevent it. The findings may help therapists and other practitioners recognize autistic burnout, and the potential dangers of teaching autistic people to mask autistic traits. Suicide prevention programs should consider the potential role of burnout. These findings highlight the need to reduce discrimination and stigma around autism and disability.
Background:
There is growing recognition that some autistic people engage in 'compensation', showing few behavioural symptoms (e.g. neurotypical social skills), despite continuing to experience autism-related cognitive difficulties (e.g. difficulties in social cognition). One way this might be achieved is by individuals consciously employing 'compensatory strategies' during everyday social interaction. However, very little is currently known about the broad range of these strategies, their mechanisms and consequences for clinical presentation and diagnosis.
Methods:
We aimed to measure compensatory strategies in autism for the first time. Using a novel checklist, we quantified self-reported social compensatory strategies in 117 adults (58 with autism, 59 without autism) and explored the relationships between compensation scores and autism diagnostic status, autistic traits, education level, sex and age at diagnosis.
Results:
Higher compensation scores-representing a greater repertoire of compensatory strategies-were associated with having an autism diagnosis, more autistic traits and a higher education level. The link between autism diagnostic status and compensation scores was, however, explained by autistic traits and education level. Compensation scores were unrelated to sex or age at diagnosis.
Limitations:
Our sample was self-selected and predominantly comprised of intellectually able females; therefore, our findings may not generalise to the wider autistic population.
Conclusions:
Together, our findings suggest that many intellectually able adults, with and without a clinical diagnosis of autism, report using compensatory strategies to modify their social behaviour. We discuss the clinical utility of measuring self-reported compensation (e.g., using our checklist), with important implications for the accurate diagnosis and management of autism and related conditions.
Autism is more commonly diagnosed in males than females. One explanation is the ‘female protective effect’: there is something inherent in being female which reduces the likelihood of developing autism. However, evidence suggests that the condition is underdiagnosed in females, perhaps because females express their autism in ways which do not meet current diagnostic criteria. This review explores evidence for a female-typical autism presentation, the Female Autism Phenotype (FAP) and the component of camouflaging (compensating for and masking autistic characteristics) in particular. The evidence so far supports the existence of a female-typical autism presentation, although further examination of the characteristics and their impact across all genders and ages is needed.
The concept of autism is a significant contribution from child psychiatry that has entered wider culture and public consciousness, and has evolved significantly over the last four decades. Taking a rather personal retrospective, reflecting on our own time in autism research, this review explores changes in the concept of autism and the implications of these for future research. We focus on seven major changes in how autism is thought of, operationalised, and recognised: (1) from a narrow definition to wide diagnostic criteria; (2) from a rare to a relatively common condition, although probably still under‐recognised in women; (3) from something affecting children, to a lifelong condition; (4) from something discreet and distinct, to a dimensional view; (5) from one thing to many ‘autisms’, and a compound or ‘fractionable’ condition; (6) from a focus on ‘pure’ autism, to recognition that complexity and comorbidity is the norm; and finally, (7) from conceptualising autism purely as a ‘developmental disorder’, to recognising a neurodiversity perspective, operationalised in participatory research models. We conclude with some challenges for the field and suggestions for areas currently neglected in autism research.
The current study explored whether people who camouflage autistic traits are more likely to experience thwarted belongingness and suicidality, as predicted by the Interpersonal Psychological Theory of Suicide (IPTS). 160 UK undergraduate students (86.9% female, 18-23 years) completed a cross-sectional online survey from 8th February-30th May 2019 including self-report measures of thwarted belongingness and perceived burdensomeness (INQ-15), autistic traits (AQ-S), depression (PHQ-9), anxiety (GAD-7), camouflaging autistic traits (CAT-Q), and lifetime suicidality (SBQ-R). Results suggest that camouflaging autistic traits is associated with increased risk of experiencing thwarted belongingness and lifetime suicidality. It is important for suicide theories such as the IPTS to include variables relevant to the broader autism phenotype, to increase applicability of models to both autistic and non-autistic people.
Mate crime is a specific subset of hate crime in which the perpetrator is known to the victim. The aim of the current study was to examine perceptions of friendship and the concept of mate crime in autistic adults. Five adults were interviewed about their experiences of social interactions, friendships and mate crime. Interpretative Phenomenological Analysis revealed three superordinate themes: (1). Perceptions and ‘learning the formula’ (2). Socialising… ‘It’s more complicated than that’, and (3). ‘Taking Advantage of You’. Themes highlight the importance of further research into positive and negative aspects of social relationships in autistic adults, and the need to challenge attitudes around disability and provide support to those who may be socially vulnerable.
Camouflaging entails ‘masking’ in or ‘passing’ social situations. Research suggests camouflaging behaviours are common in autistic people, and may negatively impact mental health. To enhance understanding of camouflaging, this study examined reasons, contexts and costs of camouflaging. 262 autistic people completed measures of camouflaging behaviours, camouflaging contexts (e.g. work vs. family), camouflaging reasons (e.g. to make friends) and mental health symptoms. Findings indicated a gender difference in reasons for camouflaging, with autistic women more likely to endorse “conventional” reasons (e.g. getting by in formal settings such as work). Both camouflaging highly across contexts and ‘switching’ between camouflaging in some contexts but not in others, related to poorer mental health. These findings have implications for understanding camouflaging in autistic adults.
There currently exist no self-report measures of social camouflaging behaviours (strategies used to compensate for or mask autistic characteristics during social interactions). The Camouflaging Autistic Traits Questionnaire (CAT-Q) was developed from autistic adults’ experiences of camouflaging, and was administered online to 354 autistic and 478 non-autistic adults. Exploratory factor analysis suggested three factors, comprising of 25 items in total. Good model fit was demonstrated through confirmatory factor analysis, with measurement invariance analyses demonstrating equivalent factor structures across gender and diagnostic group. Internal consistency (α = 0.94) and preliminary test–retest reliability (r = 0.77) were acceptable. Convergent validity was demonstrated through comparison with measures of autistic traits, wellbeing, anxiety, and depression. The present study provides robust psychometric support for the CAT-Q.
Research suggests that while individuals may self-report positive attitudes towards autism, dehumanising attitudes (seeing another as less than human) may still prevail. This study investigated knowledge, openness and dehumanising attitudes of non-autistic people towards autistic people. A total of 361 participants completed a survey measuring autism openness, knowledge and experience, along with a measure of dehumanisation. Results showed that knowledge of autism was comparable to past research and females were more open towards autism. Findings also indicated evidence for dehumanisation, with a particular denial of ‘human uniqueness’ traits. Furthermore, dehumanisation was related to openness towards autism. These findings have implications for targeting attitudes to reduce stigma associated with autism.
Background
Research has shown high rates of suicidality in autism spectrum conditions (ASC), but there is lack of research into why this is the case. Many common experiences of autistic adults, such as depression or unemployment, overlap with known risk markers for suicide in the general population. However, it is unknown whether there are risk markers unique to ASC that require new tailored suicide prevention strategies.
Methods
Through consultation with a steering group of autistic adults, a survey was developed aiming to identify unique risk markers for suicidality in this group. The survey measured suicidality (SBQ-R), non-suicidal self-injury (NSSI-AT), mental health problems, unmet support needs, employment, satisfaction with living arrangements, self-reported autistic traits (AQ), delay in ASC diagnosis, and ‘camouflaging’ ASC. One hundred sixty-four autistic adults (65 male, 99 female) and 169 general population adults (54 males, 115 females) completed the survey online.
Results
A majority of autistic adults (72%) scored above the recommended psychiatric cut-off for suicide risk on the SBQ-R; significantly higher than general population (GP) adults (33%). After statistically controlling for a range of demographics and diagnoses, ASC diagnosis and self-reported autistic traits in the general population significantly predicted suicidality. In autistic adults, non-suicidal self-injury, camouflaging, and number of unmet support needs significantly predicted suicidality.
Conclusions
Results confirm previously reported high rates of suicidality in ASC, and demonstrate that ASC diagnosis, and self-reported autistic traits in the general population are independent risk markers for suicidality. This suggests there are unique factors associated with autism and autistic traits that increase risk of suicidality. Camouflaging and unmet support needs appear to be risk markers for suicidality unique to ASC. Non-suicidal self-injury, employment, and mental health problems appear to be risk markers shared with the general population that are significantly more prevalent in the autistic community. Implications for understanding and prevention of suicide in ASC are discussed.
Within research into neurodevelopmental disorders, little is known about the mechanisms underpinning changes in symptom severity across development. When the behavioural presentation of a condition improves/symptoms lessen, this may be because core underlying atypicalities in cognition/neural function have ameliorated. An alternative possibility is ‘compensation'; that the behavioural presentation appears improved, despite persisting deficits at cognitive and neurobiological levels. There is, however, currently no agreed technical definition of compensation or its behavioural, cognitive and neural characteristics. Furthermore, its workings in neurodevelopmental disorders have not been studied directly. Here, we review current evidence for compensation in neurodevelopmental disorders, using Autism Spectrum Disorder as an example, in order to move towards a better conceptualisation of the construct. We propose a transdiagnostic framework, where compensation represents the processes responsible for an observed mismatch between behaviour and underlying cognition across development. Further, we explore potential cognitive and neural mechanisms underlying compensation and discuss the broader relevance of the concept within research and clinical settings.
Camouflaging of autistic characteristics in social situations is hypothesised as a common social coping strategy for adults with autism spectrum conditions (ASC). Camouflaging may impact diagnosis, quality of life, and long-term outcomes, but little is known about it. This qualitative study examined camouflaging experiences in 92 adults with ASC, with questions focusing on the nature, motivations, and consequences of camouflaging. Thematic analysis was used to identify key elements of camouflaging, which informed development of a three-stage model of the camouflaging process. First, motivations for camouflaging included fitting in and increasing connections with others. Second, camouflaging itself comprised a combination of masking and compensation techniques. Third, short- and long-term consequences of camouflaging included exhaustion, challenging stereotypes, and threats to self-perception.
Electronic supplementary material
The online version of this article (doi:10.1007/s10803-017-3166-5) contains supplementary material, which is available to authorized users.
p>This research aimed to ascertain the contents (Study 1) and valence (Study 2) of the stereotype associated with Autism Spectrum Conditions (ASC) in university students. Study 1 used a free-response methodology where participants listed the characteristics that they thought society associates with individuals with ASC. This study revealed that the stereotypic traits most frequently reported by students without personal experience of ASC were poor social skills, being introverted and withdrawn, poor communication and difficult personality or behaviour. Study 2 had participants rate the valence of the 10 most frequently mentioned stereotypic traits identified in Study 1, along with additional traits frequently used to describe disabled and non-disabled people. This study found that eight of the ten most frequently listed stereotypic traits from Study 1 were seen as negative, and were rated significantly more negatively than traits used to describe non-disabled people. The knowledge of the contents and valence of the stereotype of ASC gained from this research can be used to tackle negative aspects of this stereotype.</p
We used Framework Analysis to investigate the female autism phenotype and its impact upon the under-recognition of autism spectrum conditions (ASC) in girls and women. Fourteen women with ASC (aged 22–30 years) diagnosed in late adolescence or adulthood gave in-depth accounts of: ‘pretending to be normal’; of how their gender led various professionals to miss their ASC; and of conflicts between ASC and a traditional feminine identity. Experiences of sexual abuse were widespread in this sample, partially reflecting specific vulnerabilities from being a female with undiagnosed ASC. Training would improve teachers’ and clinicians’ recognition of ASC in females, so that timely identification can mitigate risks and promote wellbeing of girls and women on the autism spectrum.
BACKGROUND
Children and adolescents with autism spectrum disorder (ASD) have many well-known health concerns, yet health conditions in adults with ASD remain poorly defined.
OBJECTIVE
To examine health conditions and functional status in adults with ASD and identify factors associated with health and functional status across age cohorts.
DESIGN AND SUBJECTS
We collected cross-sectional data from 255 adult subjects aged 18 to 71 years with ASD using the Rochester Health Status Survey IV (RHSS-IV), a 58-item validated survey instrument. We used the National Health and Nutritional Examination Survey and National Health Interview Survey to provide comparative prevalence rates in the general population.
RESULTS
Compared to the general population, young adults aged 18–29 with ASD had a substantially higher prevalence of seizure disorder (11.2 % vs. 1.4 %; p = 0.002), depression (16.4 % vs. 6.4 %; p = 0.007), hypertension (12.9 % vs. 6.3 %; p = 0.05), and allergies (39.7 % vs. 8.4 %; p < 0.001). In contrast, young adults with ASD had considerably lower rates of sexually transmitted illness (STI) (0.9 % vs. 4.3 %; p = 0.03), tobacco use (5.2 % vs. 31.9 %; p < 0.001), and alcohol misuse (0.9 % vs. 11.9 %; p < 0.001). Adults 40 and over with ASD also had higher rates of seizure disorder (29.2 % vs. 1.7 %; p < 0.001), lower tobacco use (2.8 % vs. 24.5 %; p < 0.001), and lower alcohol misuse (1.4 % vs. 18.2 %; p < 0.001) compared to the general population. Amongst the 55 % of participants with a documented IQ score, 91 % had an intellectual disability (IQ < 70). Within the cohort aged 40 years old and older, only 54.2 % were independent with eating, 43.0 % independent with dressing, and 43.1 % independent with bathing. Lower IQ and depression were associated with lower functional status.
CONCLUSIONS
Adults with ASD have a high prevalence of seizure disorders and depression, but low rates of STIs, tobacco use, and alcohol misuse. Within our cohort, the majority of older adults with ASD required some assistance with activities of daily living.
In this paper we explore what we consider to be the shared concerns of those neurodivergent and/or mad-identified scholars and activists who are seeking to make space for themselves within the academy. In doing so, we consider what critical questions and action people involved in these could address together in ways that move beyond identity-based politics
This chapter focuses on research investigating developmental trajectories in typically developing (TD) infants and children and in those with neurodevelopmental disorders. In particular, we concentrate on studies of attention, language development, numeracy, and face processing in Down syndrome (DS), Williams syndrome (WS), autism spectrum disorder (ASD), specific language impairment (SLI), and Fragile X syndrome (FXS). The chapter is divided in three parts. In the first, we introduce Neuroconstructivism and highlight the dynamics of gene expression and brain development through interactions with the environment. The second part covers current research on families at genetic risk for a given disorder, and how this research goes beyond the investigation of a specific cognitive ability (e.g., language development in SLI) to explore how specificity might emerge from interrelations between different abilities over developmental time, i.e., how deficits in basic-level processes, e.g., rapid timing or global processing, can in turn affect the development of higher-level cognitive-linguistic abilities to greater or lesser degrees. We also stress the importance of cross-syndrome comparisons to pinpoint what is syndrome-specific and what is syndrome-general. Finally, we argue that developmental disorders are key to understanding typical development and that the Neuroconstructivist approach provides a strong framework within which to disentangle complex cognitive processes across developmental time. We conclude that the convergence of different neuroimaging techniques that identify both the temporal and spatial signatures of brain networks may shed new light on the relationship between the brain and cognitive development, provided changing structural and functional neural modifications are traced over developmental time.
In recent decades there has been much debate over the ontological status of autism and other neurological ‘disorders', diagnosed by behavioural indicators, and theorised primarily within the field of cognitive neuroscience and psychological paradigms. Such cognitive-behavioural discourses abstain from acknowledging the universal issue of relationality and interaction in the formation of a contested and constantly reconstructed social reality, produced through the agency of its ‘actors'. The nature of these contested interactions will be explored in this current issues piece through the use of the term the ‘double empathy problem', and how such a rendition produces a critique of autism being defined as a deficit in ‘theory of mind', re-framing such issues as a question of reciprocity and mutuality. In keeping with other autistic self-advocates, this piece will refer to ‘autistic people', and ‘those who identify as on the autism spectrum', rather than ‘people with autism'.
Thematic analysis is a poorly demarcated, rarely acknowledged, yet widely used qualitative analytic method within psychology. In this paper, we argue that it offers an accessible and theoretically flexible approach to analysing qualitative data. We outline what thematic analysis is, locating it in relation to other qualitative analytic methods that search for themes or patterns, and in relation to different epistemological and ontological positions. We then provide clear guidelines to those wanting to start thematic analysis, or conduct it in a more deliberate and rigorous way, and consider potential pitfalls in conducting thematic analysis. Finally, we outline the disadvantages and advantages of thematic analysis. We conclude by advocating thematic analysis as a useful and flexible method for qualitative research in and beyond psychology.
This paper presents an integrative review of current and classic theory and research on social stigma and its consequences for the socially stigmatized. Specific attention is paid to stigma-related processes surrounding race/ethnicity, gender, and sexual orientation. The origins and perpetration of social stigma are discussed alongside perspectives on how stigmatized groups and individuals experience stigma-related stress. Consideration is given to responses to stigma in the form of coping, social support, and meaning-making processes. Both the potential negative and positive consequences of social stigma are highlighted in this review through the integration of predominant social psychological theory with emerging critical and feminist theories of positive marginality and resistance. The paper culminates in a theoretical process model designed to provoke future theory and research that share its integrative aims.
Identity theory and social identity theory are two remarkably similar perspectives on the dynamic mediation of the socially constructed self between individual behavior and social structure. Yet there is almost no systematic communication between these two perspectivies; they occupy parallel bur separate universes. This article describes both theories, summarizes their similarities, critically discusses their differences and outlines some research directions. Against a background of metatheoretical similarity, we find marked differences in terms of 1) level of analysis, 2) the role of intergroup behavior, 3) the relationship between roles and groups, and 4) salience of social context and identity. Differences can be traced largely to the microsociological roots of identity theory and the psychological roots of social identity theory. Identiy theory may be more effective in dealing with chronic identities and with interpersonal social interaction, while social identity theory may be more useful in exploring intergroup dimensions and in specifying the sociocognitive generative details of identity dynamics.
Purpose
In this article, the authors present a tutorial on the use of developmental trajectories for studying language and cognitive impairments in developmental disorders and compare this method with the use of matching.
Method
The authors assess the strengths, limitations, and practical implications of each method. The contrast between the methodologies is highlighted using the example of developmental delay and the criteria used to distinguish delay from atypical development.
Results
The authors argue for the utility of the trajectory approach, using illustrations from studies investigating language and cognitive impairments in individuals with Williams syndrome, Down syndrome, and autism spectrum disorder.
Conclusion
Two conclusions were reached: (a) An understanding of the underlying mechanism will be furthered by the richer descriptive vocabulary provided by the trajectories approach (e.g., in distinguishing different types of delay) and (b) an optimal design for studying developmental disorders is to combine initial cross-sectional designs with longitudinal follow-up.
Ever since people's responses to overwhelming experiences have been systematically explored, researchers have noted that a trauma is stored in somatic memory and expressed as changes in the biological stress response. Intense emotions at the time of the trauma initiate the long-term conditional responses to reminders of the event, which are associated both with chronic alterations in the physiological stress response and with the amnesias and hypermnesias characteristic of posttraumatic stress disorder (PTSD). Continued physiological hyperarousal and altered stress hormone secretion affect the ongoing evaluation of sensory stimuli as well. Although memory is ordinarily an active and constructive process, in PTSD failure of declarative memory may lead to organization of the trauma on a somatosensory level (as visual images or physical sensations) that is relatively impervious to change. The inability of people with PTSD to integrate traumatic experiences and their tendency, instead, to continuously relieve the past are mirrored physiologically and hormonally in the misinterpretation of innocuous stimuli as potential threats. Animal research suggests that intense emotional memories are processed outside of the hippocampally mediated memory system and are difficult to extinguish. Cortical activity can inhibit the expression of these subcortically based emotional memories. The effectiveness of this inhibition depends, in part, on physiological arousal and neurohormonal activity. These formulations have implications for both the psychotherapy and the pharmacotherapy of PTSD.
Autistic masking is an emerging research area that focuses on understanding the conscious or unconscious suppression of natural autistic responses and adoption of alternatives across a range of domains.
It is suggested that masking may relate to negative outcomes for autistic people, including late/missed diagnosis, mental health issues, burnout, and suicidality. This makes it essential to understand what masking is, and why it occurs.
In this conceptual analysis, we suggest that masking is an unsurprising response to the deficit narrative and accompanying stigma that has developed around autism.
We outline how classical social theory (i.e., social identity theory) can help us to understand how and why people mask by situating masking in the social context in which it develops.
We draw upon the literature on stigma and marginalization to examine how masking might intersect with different aspects of identity (e.g., gender). We argue that although masking might contribute toward disparities in diagnosis, it is important that we do not impose gender norms and stereotypes by associating masking with a “female autism phenotype.”
Finally we provide recommendations for future research, stressing the need for increased understanding of the different ways that autism may present in different people (e.g., internalizing and externalizing) and intersectionality.
We suggest that masking is examined through a sociodevelopmental lens, taking into account factors that contribute toward the initial development of the mask and that drive its maintenance.
This thesis aimed to investigate the role of minority stress (MS) and autistic community connectedness (ACC) on mental health (MH) and wellbeing in the autistic community. Multiple methods were used, across four studies. Study one consisted of a qualitative study using grounded theory tools to create a measure of ACC, as none existed. The findings indicated that ACC compromises of three sub-domains – belongingness, social, and political connectedness. Stigma and identity both informed the level of ACC experienced by participants. In study two, a measure of ACC was created and validated in a new sample of autistic individuals (N = 133) using confirmatory factor analysis to test factor-structure and for item purification. Results indicated factorial, convergent and discriminant validity, for a 10-item scale. Studies three and four consisted of a cross-sectional and longitudinal survey where 195 autistic and 181 non-autistic people completed questionnaires at baseline and 99 autistic participants completed measures nine months later at follow-up. Resilience resources, ACC, MH and wellbeing, and MS were measured both times. Study three showed that the differences in MH, wellbeing, and resilience resources between the autistic and non-autistic sample persisted beyond demographics and general stress. Higher MS predicted lower MH and wellbeing, while ACC moderated the relationship between MS and MH, ameliorating the effects of MS. The longitudinal study (study four) showed that higher MS scores at baseline were associated with worse MH and wellbeing nine-months later, while higher ACC was associated with better MH and wellbeing. The results suggest a model of ACC and MS whereby autistic people may experience differing levels of ACC depending on experiences of stigma and autistic identity. This ACC in turn moderates the impact of MS on MH.These findings and implications of the research are further integrated into autism, MS, MH, and community literature.
Attention-deficit/hyperactivity disorder (ADHD) is a neuropsychiatric disorder normally diagnosed in childhood and persisting into adulthood in up to two-thirds of the patients. Its core symptoms comprise inattention and hyperactive–impulsive behaviours. Several studies suggest that patients with ADHD show alterations in self-regulation and self-monitoring. So far, it has not been described whether these deficits also affect the awareness of one’s own bodily signals, that is, interoceptive awareness. To investigate possible alterations in interoceptive awareness, 14 adult patients with ADHD and 16 healthy controls performed a heartbeat detection task, in which they had to count their heartbeat without any external help (e.g. visualization on a screen). As an indicator of the individual interoceptive awareness ability, a score based on the comparison between recorded and counted heart beats was calculated. Our results showed that patients with ADHD performed significantly worse on this task than controls, which indicates that they were less aware of internal bodily signals while additionally experiencing deficits in regulating and monitoring their own (overt) behaviours.
Should we continue to refer to autism as a ‘disease’ or ‘disorder’, or is the framework of ‘neurodiversity’ a more humane and accurate lens through which to view people with autism? Evidence at the genetic, neural, behavioural and cognitive levels reveals people with autism show both differences, and signs of disability, but not disorder. Disability requires societal support, acceptance of difference and diversity, and societal “reasonable adjustment”, whilst disorder is usually taken to require cure or treatment. These are very different frameworks. It will be important to see how the concept of neurodiversity is applied to the 300 diagnoses in DSM-5, and if it revolutionizes both the science and the practice of psychiatry.
This small-scale exploratory study sought to develop an understanding of the meaning of well-being and social belonging as represented within the narratives of adults on the autism spectrum. Employing an interpretivist approach facilitated the investigation of potential contributory factors to these lived experiences in order to inform further research regarding both this topic, and service provision for adults on the autism spectrum. The project involved a thematic analysis of issues of the magazine Asperger United (AU). Four broad main themes were identified: meeting personal needs, living with the consequences of an ‘othered’ identity, connection and recognition, and relationships and advocacy. Autistic adults reported many barriers to feeling that they belonged in a number of social spaces and the detrimental effect this had on their wellbeing. Fundamental to positive narratives of wellbeing, were feelings of connection and recognition from others and positive accepting relationships, with autistic-led spaces, particularly the Autscape conference, being frequently cited as of central significance in increasing feelings of wellbeing and belonging. This study has demonstrated a need for less focus on remediation and more on limiting the social isolation of autistic people.
Originally published in 1989, Reclaiming Reality still provides the most accessible introduction to the increasingly influential multi-disciplinary and international body of thought, known as critical realism. It is designed to "underlabour" both for the sciences, especially the human sciences, and for the projects of human emancipation which such sciences may come to inform; and provides an enlightening intervention in current debates about realism and relativism, positivism and poststucturalism, modernism and postmodernism, etc. Elaborating his critical realist perspective on society, nature, science and philosophy itself, Roy Bhaskar shows how this perspective can be used to undermine currently fashionable ideologies of the Right, and at the same time, to clear the ground for a reinvigorated Left. Reclaiming Reality contains powerful critiques of some of the most important schools of thought and thinkers of recent years-from Bachelard and Feyerabend to Rorty and Habermas; and it advances novel and convincing resolutions of many traditional philosophical problems. Now with a new introduction from Mervyn Hartwig, this book continues to provide a straightforward and stimulating introduction to current debates in philosophy and social theory for the interested lay reader and student alike. Reclaiming Reality will be of particular value not only for critical realists but for all those concerned with the revitalization of the socialist emancipatory project and the renaissance of the Marxist theoretical tradition. Roy Bhaskar is the originator of the philosophy of critical realism, and the author of many acclaimed and influential works including A Realist Theory of Science, The Possibility of Naturalism, Scientific Realism and Human Emancipation and Dialectic: The Pulse of Freedom. He is an editor of the recently published Critical Realism: Essential Readings and is currently chair of the Centre for Critical Realism.
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