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Storying ableism: proposing a feminist intersectional approach to linking theory and digital activism
Rahel More
Abstract
By addressing ableism through social media and other digital outlets, feminist disability activists share stories on what it means to be human from an intersectional perspective, and their storying is a way of understanding and theorising the world.
However, the possibilities of digital disability activism to story ableism within broader feminist debates are underexplored.
Storying as an anti-hegemonic approach to theorising ableism further from an intersectional perspective, implemented through an activist-academic working alliance, contributes to speaking otherwise about disability and draws attention to disability perspectives in feminist theory. In this article, I propose a feminist intersectional approach to storying ableism that exposes manifestations of ableism in its intersections with classism, racism and sexism at structural, identity and representational levels.
I then argue for digital disability activism as a means of storying ableism, provide examples of such storying and describe the potentials and principles of digital activist storying.
While the creation of further theory is central to the proposed approach, the connection of intersectionality theory with ableism and feminist disability theory serves as its foundation.
I discuss how linking ableism with intersectionality strengthens the uncovering of ableism at different levels, why studies of ableism should be extended to fields beyond Disability Studies but remain closely connected to disability activism and how feminist disability theory has thus far shaped debates on the dis/ability binary in relation to the gendered body.
Emotional theory of mind in eating disorders
Medina-Pradas, C., Blas, J., Alvarez-Moya, E.M. and Obiols, J.E.
Abstract
The general aim of this ex post facto study was to investigate the emotional component of theory of mind (eToM) in a sample of 97 female patients with eating disorders (ED), considering all the diagnostic subtypes. Empirical research on this matter in ED is limited, specially focused on anorexia nervosa (AN), and results have been contradictory. The Reading the Mind in the Eyes test was administered to the patients and to 39 healthy controls. The emotional valence of the items was also examined. Patients with bulimia nervosa (BN) and ED-not otherwise specified (EDNOS) showed a poorer eToM ability compared to controls, especially in relation to positive emotions and non-emotional cognitive states. AN patients showed no differences in relation to controls. These results suggest that BN and EDNOS may show a specific pattern of difficulties inferring complex emotions, while AN patients would have no relevant difficulties in this regard. These deficits may need to be targeted in psychological treatment.
Gender identity in autism and neurodiversity
Leif Ekblad
Abstract
Gender identities that differ from biological sex (non-cisgender identities) appear to be more common in autism and neurodiversity.
The study found that part of the non-cisgender identities could be related to having behavioral preferences of the opposite sex, but this failed to explain the higher prevalence in neurodiversity.
Non-cisgender identities in neurodiversity could better be explained by having neurodiverse relationship preferences or lacking typical relationship preferences.
Being part of the LGBT (Lesbian Gay Bi Transgender) community biased answers to questions about gender identity.
Neurodiverse non-cisgender people, just like neurodiverse asexual people, might be better off with new communities that focus on the more relevant relationship preference differences rather than on narrow and indirect gender and sexual issues.
A model linking emotional dysregulation in neurodivergent people to the proprioceptive impact of joint hypermobility
Jessica A. Eccles, Lisa Quadt, Sarah N. Garfinkel, Hugo D. Critchley
Abstract
Emotional feelings are putatively ascribed to central representation of bodily states in the context of expectation and uncertainty in both internal state and external world.
Neurodivergent people are more likely to experience co-occurring mental health challenges, although mechanistic insights underpinning this association are scarce.
We therefore undertook a study to test whether imprecise processing of proprioceptive error signals may underlie the connection between neurodivergence and emotional dysregulation.
In a cohort of people with complex chronic conditions, including chronic pain/fatigue, and complex trauma, and in a comparison group, we assessed presence of neurodivergence, variant connective tissue manifested through joint hypermobility, and emotional dysregulation.
We present a data-informed conceptual model showing that variant connective tissue determines whether proprioceptive surprise is linked with emotional dysregulation in neurodivergent individuals.
We suggest that future research in this area may have important clinical implications for the interaction of mental and physical wellbeing in neurodivergent people.
This article is part of the theme issue ‘Sensing and feeling: an integrative approach to sensory processing and emotional experience’.
Interoception and psychopathology: A developmental neuroscience perspective
Jennifer Murphy, Rebecca Brewer, Caroline Catmur, Geoffrey Bird
Abstract
Interoception refers to the perception of the physiological condition of the body, including hunger, temperature, and heart rate.
There is a growing appreciation that interoception is integral to higher-order cognition. Indeed, existing research indicates an association between low interoceptive sensitivity and alexithymia (a difficulty identifying one’s own emotion), underscoring the link between bodily and emotional awareness.
Despite this appreciation, the developmental trajectory of interoception across the lifespan remains under-researched, with clear gaps in our understanding.
This qualitative review and opinion paper provides a brief overview of interoception, discussing its relevance for developmental psychopathology, and highlighting measurement issues, before surveying the available work on interoception across four stages of development: infancy, childhood, adolescence and late adulthood.
Where gaps in the literature addressing the development of interoception exist, we draw upon the association between alexithymia and interoception, using alexithymia as a possible marker of atypical interoception.
Evidence indicates that interoceptive ability varies across development, and that this variance correlates with established age-related changes in cognition and with risk periods for the development of psychopathology.
We suggest a theory within which atypical interoception underlies the onset of psychopathology and risky behaviour in adolescence, and the decreased socio-emotional competence observed in late adulthood.
"Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout
Dora M. Raymaker, Alan R. Teo, Nicole A. Steckler, Brandy Lentz, Mirah Scharer, Austin Delos Santos, Steven K. Kapp, Morrigan Hunter, Andee Joyce, and Christina Nicolaidis
Abstract
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.
Pathological demand avoidance: What and who are being pathologised and in whose interests?
Allison Moore
Abstract
The term ‘pathological demand avoidance’ was first coined in 1983.
In recent years, diagnostic tools have emerged to enable practitioners to identify, name and treat pathological demand avoidance and, at least in the United Kingdom, there is an increasing number of children who attract this label.
In addition to what are defined as the core ‘deficits’ of autism, including assumed difficulties in social communication, difficulties in social interaction and restrictive interests, children with pathological demand avoidance are thought to have an extreme anxiety-driven need to control their environment and control the demands and expectations of others.
This article will argue that we must exercise extreme caution in accepting the validity of pathological demand avoidance and will suggest that it can be seen as an attempt to psychiatarise autistic children’s resistance, which, in so doing, restricts their agency.
First, it will draw on the arguments put forward by some autistic scholars who have claimed that pathological demand avoidance is better understood as rational demand avoidance – an understandable and rational response to the circumstances that one finds oneself in.
Second, it will consider the intersection between autism and childhood.
When one of the defining characteristics of pathological demand avoidance is an inability to recognise and, presumably, respect social hierarchy, children’s competencies as social actors and active meaning makers of their world can easily become pathologised as defiance.
Finally, the article will address the intersections of autism, childhood and gender.
Girls are much less likely to be diagnosed as having an autism spectrum condition than boys are, with a ratio traditionally estimated at approximately 1:4.
However, pathological demand avoidance diagnoses are fairly evenly spread between boys and girls.
It will be argued that it is girls’ resistance to the ordinary and everyday demands of her as a girl and her subsequent rejection or transgression of those expectations that is being pathologised.
Autistic Traits and Empathy in Children With Attention Deficit Hyperactivity Disorder, Autism Spectrum Disorder and Co-occurring Attention Deficit Hyperactivity Disorder/Autism Spectrum Disorder
Stefania Aiello, David Vagni, Antonio Cerasa, Elisa Leonardi, Cristina Carrozza, Francesca Famà, Agrippina Campisi, Flavia Marino, Rosamaria Siracusano, Maria Ausilia Alquino, Francesco Mainiero, Eva Germano, Gennaro Tartarisco, Giovanni Pioggia, Antonella Gagliano, Liliana Ruta
Abstract
Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorders (ASD) are two of the most represented neurodevelopmental conditions in childhood.
The diagnostic shift introduced by the DSM-5, allowing a combined diagnosis of ADHD and ASD, poses different clinical challenges related to diagnostic overshadowing, accuracy of clinical judgment and potential delay in an ASD diagnosis in children presenting with ADHD.
Here we tried to disentangle the clinical phenotype and specificity of the two co-occurring conditions in relation to autism traits and empathy, by comparing children with ASD with and without comorbid ADHD with children presenting ADHD only and children with typical development.
The child versions of the Autism Quotient (C-AQ) and Empathy Quotient (C-EQ) were administered to a total sample of 198 male children between 6 and 14 years old with age appropriate language skills and normal intelligence.
Univariate analysis demonstrated no significant differences in the C-AQ total and subscale scores as well as the C-EQ between children with ASD and children with ASD + ADHD, while children with ADHD alone presented an intermediate phenotype between ASD and TD.
Furthermore, a receiver operating characteristic (ROC) analysis was applied to discriminate among the different phenotypes. We found that the C-AQ and C-EQ were accurate at distinguishing with satisfactory reliability between: (a) ASD vs. non- ASD (N-ASD) groups comprising both ADHD and TD children (Area Under the Curve AUC 88% for C-AQ and 81% for C-EQ); (b) ASD and TD (AUC 92% for C-AQ and 95% for C-EQ); (c) ASD and ADHD (AUC 80% for C-AQ and 68% for C-EQ).
Our data confirm the reliability of the C-AQ and C-EQ as behavioral markers to differentiate ASD (regardless of comorbid ADHD) from an ADHD condition and TD.
Interestingly, in our sample an ADHD condition does not increase the severity of the clinical phenotype in terms of autism traits distribution and empathy, suggesting that the psychological measures detected by the two quantitative instruments are independent of ADHD traits.
This evidence will contribute to the translational efforts in developing better tailored treatments and preventive strategies.
A Delayed Diagnosis of Autism Spectrum Disorder in the Setting of Complex Attention Deficit Hyperactivity Disorder
Michelle I. Malwane, Eric B. Nguyen,Sergio Trejo Jr., Erica Y. Kim, José R. Cucalón-Calderón, Eric Nguyen, Jose Cucalon Calderon
Abstract
Autism spectrum disorder (ASD) presents a diagnostic challenge due to its highly heterogeneous nature.
The most common clinical manifestations include difficulty with social interaction and the presence of repetitive sensory-motor behaviors.
Females are more likely to be misdiagnosed or have a delayed diagnosis compared to males.
Other factors that contribute to delayed diagnosis include low socioeconomic status and belonging to an ethnic minority.
In pediatrics, the goal of ASD screening is to diagnose ASD earlier, with timely referral to early intervention services, so that better long-term neurodevelopmental outcomes can be achieved.
Moreover, attention deficit hyperactivity disorder (ADHD) is the most common comorbidity in patients with ASD. While the Diagnostic and Statistical Manual of Mental Disorders fourth edition (DSM-4) prohibited a co-diagnosis of autism and ADHD, the DSM-5 has modified exclusion criteria to allow such.
This case describes a minority adolescent male patient who presented initially with complex ADHD, who upon extensive evaluation, was ultimately diagnosed with co-existing autism.
This patient’s diagnosis of ASD at the age of 14 in the setting of a pre-existing complex ADHD diagnosis demonstrates how symptoms of inattention or hyperactivity may convolute underlying or newly emerging social interaction difficulties.
We highlight how children who are diagnosed with ADHD should be screened or evaluated for autism in the right clinical setting, such as evident persistence of social interaction impairment despite ADHD treatment.
“Nothing about Us without Us” Meets the “All Teach, All Learn” Model: Autistic Self-Advocates as Leaders and Collaborators in Project ECHO
Karís A. Casagrande, Sage Davis, Benjamin S. Moore, Angela V. Dahiya, Ivanova Smith, Sydney Krebsbach, James Mancini
Abstract
Those with intellectual and developmental disabilities (I/DD), especially autism, represent an often misunderstood and underserved population. In order to address health disparities faced by those with I/DD in Washington state, the Extension for Community Healthcare Outcomes (Project ECHO) model was implemented to build capacity to serve these individuals and their families in their home communities. Through this year-long telementorship and learning community, expert teams lead clinics based on interdisciplinary case-based discussion and knowledge sharing with medical, behavioral, and mental healthcare providers. A cornerstone of these expert teams are autistic self-advocates, who provide insight into lived experience. In this paper, we will discuss how the inclusion of six autistic self-advocates across four different ECHO programs has allowed ECHO participants to broaden their horizons and gain new insight into supports for their I/DD clients across multiple aspects of care. In addition to the unique knowledge provided by self-advocates, their participation illustrates the potential for all people with I/DD to live rich and fulfilling lives. The initial implementation and on-going success of including lived experience within the ECHO model can be used as an example of how to create partnerships that meaningfully inform decisions and improve equitable outcomes in service provision.
A critical reflection on definitions of autistic well‐being
Deakin M, Petty S, Heasman B, Hamilton LG
Abstract
Our ongoing systematic literature review of psychological well-being interventions for autistic adults highlighted that the concept of well-being has been poorly operationalized for autistic people in clinical literature.
Our investigation aims to contribute a novel review of how well psychological well-being interventions are designed for autistic adults.
While assumptions around the definition of autism have been critiqued extensively in literature (Heasman & Parfitt, 2023) our review of 69 studies found that the concept of “well-being”, as it applies to autistic people, has received comparatively little attention.
We raise three issues with the current oversimplification of well-being when it is understood as a return to “normal” functioning through the remediation of ill-being.
We suggest that a way forward is to embrace contemporary theorizing of both being autistic (Chapman, 2021; Kourti, 2021) and of experiencing wellness vulnerabilities (van Os et al., 2019).
A review of what is meant by autistic well-being would inform clinical and research practices.
Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain
J Csecs, V Iodice, C Rae, A Brooke, R Simmons, L Quadt, G Savage, N Dowell, F Prowse, K Themelis, C Mathias, H Critchley, J Eccles
Abstract
Autism, attention deficit hyperactivity disorder (ADHD), and tic disorder (Tourette syndrome; TS) are neurodevelopmental conditions that frequently co-occur and impact psychological, social, and emotional processes. Increased likelihood of chronic physical symptoms, including fatigue and pain, are also recognized.
The expression of joint hypermobility, reflecting a constitutional variant in connective tissue, predicts susceptibility to psychological symptoms alongside recognized physical symptoms.
Here, we tested for increased prevalence of joint hypermobility, autonomic dysfunction, and musculoskeletal symptoms in 109 adults with neurodevelopmental condition diagnoses.
Rates of generalized joint hypermobility (GJH, henceforth hypermobility) in adults with a formal diagnosis of neurodevelopmental conditions (henceforth neurodivergent group, n = 109) were compared to those in the general population in UK.
Levels of orthostatic intolerance and musculoskeletal symptoms were compared to a separate comparison group (n = 57).
Age specific cut-offs for GJH were possible to determine in the neurodivergent and comparison group only.
The neurodivergent group manifested elevated prevalence of hypermobility (51%) compared to the general population rate of 20% and a comparison population (17.5%).
Using a more stringent age specific cut-off, in the neurodivergent group this prevalence was 28.4%, more than double than the comparison group (12.5%).
Odds ratio for presence of hypermobility in neurodivergent group, compared to the general population was 4.51 (95% CI 2.17–9.37), with greater odds in females than males.
Using age specific cut-off, the odds ratio for GJH in neurodivergent group, compared to the comparison group, was 2.84 (95% CI 1.16–6.94).
Neurodivergent participants reported significantly more symptoms of orthostatic intolerance and musculoskeletal skeletal pain than the comparison group.
The number of hypermobile joints was found to mediate the relationship between neurodivergence and symptoms of both dysautonomia and pain. In neurodivergent adults, there is a strong link between the expression of joint hypermobility, dysautonomia, and pain, more so than in the comparison group.
Moreover, joint hypermobility mediates the link between neurodivergence and symptoms of dysautonomia and pain.
Increased awareness and understanding of this association may enhance the management of core symptoms and allied difficulties in neurodivergent people, including co-occurring physical symptoms, and guide service delivery in the future.
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