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Journal Articles

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Why the Diagnosis of Attention Deficit Hyperactivity Disorder Matters
Alaa M. Hamed, Aaron J. Kauer, Hanna E. Stevens

Abstract

Attention Deficit Hyperactivity disorder (ADHD) is one of the most common and challenging childhood neurobehavioral disorders. ADHD is known to negatively impact children, their families, and their community. About one-third to one-half of patients with ADHD will have persistent symptoms into adulthood. The prevalence in the United States is estimated at 5–11%, representing 6.4 million children nationwide. The variability in the prevalence of ADHD worldwide and within the US may be due to the wide range of factors that affect accurate assessment of children and youth. Because of these obstacles to assessment, ADHD is under-diagnosed, misdiagnosed, and undertreated. We examined factors associated with making and receiving the diagnosis of ADHD. We sought to review the consequences of a lack of diagnosis and treatment for ADHD on children’s and adolescent’s lives and how their families and the community may be involved in these consequences. We reviewed scientific articles looking for factors that impact the identification and diagnosis of ADHD and articles that demonstrate naturalistic outcomes of diagnosis and treatment. The data bases PubMed and Google scholar were searched from the year 1995 to 2015 using the search terms “ADHD, diagnosis, outcomes.” We then reviewed abstracts and reference lists within those articles to rule out or rule in these or other articles. Multiple factors have significant impact in the identification and diagnosis of ADHD including parents, healthcare providers, teachers, and aspects of the environment. Only a few studies detailed the impact of not diagnosing ADHD, with unclear consequences independent of treatment. A more significant number of studies have examined the impact of untreated ADHD. The experience around receiving a diagnosis described by individuals with ADHD provides some additional insights. ADHD diagnosis is influenced by perceptions of many different members of a child’s community. A lack of clear understanding of ADHD and the importance of its diagnosis and treatment still exists among many members of the community including parents, teachers, and healthcare providers. More basic and clinical research will improve methods of diagnosis and information dissemination. Even before further advancements in science, strong partnerships between clinicians and patients with ADHD may be the best way to reduce the negative impacts of this disorder.
Camouflaging in autism spectrum disorder: Examining the roles of sex, gender identity and diagnostic timing
Goldie McQuaid, Nancy Raitano Lee, Gregory Wallace

Abstract

Camouflaging in autism spectrum disorder (ASD) could be a factor in later diagnosis of individuals without co-occurring intellectual disability, particularly among those assigned female sex at birth.  Little research to date has examined how gender identity impacts camouflaging, however.  Further, no study has compared groups that differ in diagnostic-timing to directly investigate if later-diagnosed individuals demonstrate elevated camouflaging relative to those receiving an earlier diagnosis.  Using the Camouflaging Autistic Traits Questionnaire (CAT-Q) subscales (Assimilation, Compensation, and Masking), we investigated the roles of sex, gender identity (gender diverse vs. cisgender), and diagnostic timing (childhood/adolescent-diagnosed vs. adult-diagnosed), and the interactions of these factors, in ASD adults (N=502; ages 18-49 years).  Main effects of sex, gender identity, and diagnostic-timing were revealed.  ASD females reported more camouflaging across CAT-Q subscales compared to males.  Gender diverse adults reported elevated camouflaging on the Compensation subscale compared to cisgender adults.  Adulthood-diagnosed individuals reported elevated Assimilation and Compensation compared to childhood/adolescence-diagnosed individuals.  We discuss how the ‘performative’ aspects of camouflaging probed in the Assimilation and Compensation subscales may have particular implications for the intersection of neurodiversity and gender diversity, and for later diagnostic timing.
Mast cells in the autonomic nervous system and potential role in disorders with dysautonomia and neuroinflammation
Theoharis C. Theoharides, Assma Twahir, Duraisamy Kempuraj

Abstract

Mast cells (MC) are ubiquitous in the body, and they are critical for not only in allergic diseases but also in immunity and inflammation, including having potential involvement in the pathophysiology of dysautonomias and neuroinflammatory disorders.  MC are located perivascularly close to nerve endings and sites such as the carotid bodies, heart, hypothalamus, the pineal gland, and the adrenal gland that would allow them not only to regulate but also to be affected by the autonomic nervous system (ANS).  MC are stimulated not only by allergens but also many other triggers including some from the ANS that can affect MC release of neurosensitizing, proinflammatory, and vasoactive mediators.  Hence, MC may be able to regulate homeostatic functions that seem to be dysfunctional in many conditions, such as postural orthostatic tachycardia syndrome, autism spectrum disorder, myalgic encephalomyelitis/chronic fatigue syndrome, and Long-COVID syndrome.  The evidence indicates that there is a possible association between these conditions and diseases associated with MC activation.  There is no effective treatment for any form of these conditions other than minimizing symptoms.  Given the many ways MC could be activated and the numerous mediators released, it would be important to develop ways to inhibit stimulation of MC and the release of ANS-relevant mediators.
Neurodivergence, intersectionality, and eating disorders: A lived experience-led narrative review
Cobbaert, L., Rose, A., Elwyn, R., Silverstein, S., Schweizer, K., Thomas, E., & Miskovic-Wheatley, J.

Abstract

Autistic people and those with attention deficit hyperactivity disorder are at a high risk of developing an eating disorder.  While there is limited evidence on the relationship between other forms of neurodivergence and eating disorders, research suggests associations between giftedness, intellectual disability, Tourette’s syndrome, and disordered eating.  Factors underlying disordered eating and/or eating disorder risk for neurodivergent people are multifaceted and complex, encompassing a wide range of intertwined psychosocial, environmental, and biological processes.  Moreover, research shows that neurodivergent individuals experience poorer treatment outcomes compared to neurotypical individuals.  However, there is a paucity of research in this area overall.  More specifically, lived experience-led research remains rare, despite its critical role for improving individualised eating disorder care, as well as mental healthcare more broadly.  Indeed, the importance of eating disorder care individuation is increasingly being recognised, particularly within the context of neurodivergence, given the heterogeneous experiences and support needs of neurodivergent people affected by disordered eating and/or eating disorders.  Furthermore, despite documented overlaps between various forms of neurodivergence (e.g., co-occurring autism and attention deficit hyperactivity disorder), research looking at eating disorders in the context of neurodivergence through a transdiagnostic perspective is scarce.  This lived experience-led narrative review aims to shed light on the intersectional factors underlying high disordered eating and/or eating disorder risk for neurodivergent individuals.  First, an overview of prevalence data is provided, followed by a thematic framework identifying factors underlying disordered eating and/or eating disorder risk in relation to neurodivergence.  A critical appraisal of current eating disorder research and care is then offered before suggestions for neurodiversity-affirming eating disorder care are made. In this view, this paper offers a foundation for future empirical work in this nascent field of inquiry by providing a lived experience-led, transdiagnostic, and intersectional account of eating disorders in the context of neurodivergence.
Differences in ongoing thought between autistic and non-autistic adults
Will H. Strawson, Brontë Mckeown, Lisa Quadt, Hao-Ting Wang, Dennis E. O. Larrson, James Mulcahy, Marta Silva, Christina Kampoureli, Adam Turnbull, Sarah N. Garfinkel, Jonathan Smallwood & Hugo D. Critchley

Abstract

Autistic people may be distinguishable from non-autistic individuals in the content and modality of their thoughts. Such differences potentially underlie both psychological vulnerability and strengths, motivating the need to better understand autistic thought patterns. In non-clinical undergraduates, a recent study found that autistic traits were associated with thinking more in words than images. However, it is unclear whether such differences in thought are present in clinically diagnosed autistic individuals. The current study applied the same methods (multidimensional experience sampling during an N-back task) to examine ongoing thought in autistic and non-autistic adults. We found that autistic individuals showed less variability in the modality of their thoughts between easy and difficult task contexts. While both non-autistic and autistic participants tended to report thinking more in words during the difficult task context, the difference between conditions was significantly smaller for the autistic group. In addition, autistic individuals showed a weaker coupling between task performance and off-task social thinking, a finding that may be related to differences in social processing during the off-task state. Overall, our results provide a clinical replication and extension of previous work, highlighting the differential effects of changing external context on internal mental states in autism.
Interoception in Autism: A Narrative Review of Behavioral and Neurobiological Data
Fernanda Loureiro, Sofronia M Ringold, Lisa Aziz-Zadeh

Abstract

While exteroceptive sensory processing is a hallmark of autism spectrum disorder, how interoceptive processing may impact and contribute to symptomatology remains unclear.  In this comprehensive narrative review on interoception in autism, we discuss:  1) difficulties with assessing interoception;  2) potential interoceptive differences;  3) interactions between neural systems for interoception, attention, sensorimotor processing, and cognition; and  4) potential differences in neural circuits involved in interoception.  In general, there are mixed findings on potential interoception differences in autism.  Nevertheless, some data indicate differences in integration of interoceptive and exteroceptive information may contribute to autism symptomatology.  Neurologically, interoceptive processing in autism may be impacted by potential differences in the development, morphometry, and connectivity of key interoceptive hubs (vagal processing, brainstem, thalamus, insula), though much work is needed on this topic.
Autism, Personality, and Human Diversity
Leif Ekblad

Abstract

The aim of this study was to define neurodiversity in a scientific manner so it can be researched in further studies without involving disorders defined by psychiatry or popular beliefs about neurodiversity in the autistic community.  Neurodiversity was defined as the primary factor output by factor analysis of a data set of human behaviors which contains evenly distributed traits of all sorts that cover all of human diversity. Neurotypical function was defined as the second factor.  The study used many different traits and a large sample to find the full extent of neurodiversity, and to provide evenly distributed traits.  The result was a test with 145 scoring items and 5 control items that could give participants a neurodiverse and a neurotypical score, and an indication that the participant was neurodiverse, neurotypical, or mixed.  It was found that the neurodiversity score was independent of gender and age, and that the prevalence appears to have remained unchanged.  There were possible differences in racial prevalence that need further research.  The results correlated to many disorders defined by psychiatry, and also with several factors in personality tests. People who had been diagnosed with these disorders had considerably higher neurodiversity scores.  The idea that neurodiversity was at the extreme end of a normal distribution was not supported, rather it was found that neurodiversity had its own normal distribution overlapping typical traits.
Is camouflaging unique for autism? A comparison of camouflaging between adults with autism and ADHD
W. J. van der Putten,A. J. J. Mol,A. P. Groenman,T. A. Radhoe,C. Torenvliet,J. A. Agelink van Rentergem,H. M. Geurts

Abstract

Camouflaging (using (un)conscious strategies to appear as non‐autistic) is thought to be an important reason for late autism diagnoses and mental health difficulties.  However, it is unclear whether only autistic people camouflage or whether people with other neurodevelopmental or mental health conditions also use similar camouflaging strategies.  Therefore, in this preregistered study (AsPredicted: #41811) study, we investigated if adults with attention‐deficit/hyperactivity‐disorder (ADHD) also camouflage.  Adults aged 30–90 years filled in the Dutch Camouflaging Autistic Traits Questionnaire (CAT‐Q‐NL), the ADHD Self‐Report (ADHD‐SR) and the Autism Spectrum Quotient (AQ).  We investigated differences in camouflaging between adults with ADHD, autism, and a comparison group in an age and sex‐matched subsample (N = 105 per group).  We explored if autism and ADHD traits explained camouflaging levels in adults with an autism and/or ADHD diagnosis (N = 477).  Adults with ADHD scored higher on total camouflaging and assimilation subscale compared to the comparison group.  However, adults with ADHD scored lower on total camouflaging, and subscales compensation and assimilation than autistic adults.  Autism traits, but not ADHD traits, were a significant predictor of camouflaging, independent of diagnosis.  Thus, camouflaging does not seem to be unique to autistic adults, since adults with ADHD also show camouflaging behavior, even though not as much as autistic adults.  However, as the CAT‐Q‐NL specifically measures camouflaging of autistic traits it is important to develop more general measures of camouflaging, to compare camouflaging more reliably in people with different mental health conditions.  Furthermore, focusing on camouflaging in adults with ADHD, including potential consequences for late diagnoses and mental health seems a promising future research avenue. In the present study, we investigated whether only autistic people use strategies to hide one's autistic traits (also referred to as camouflaging) or whether people with ADHD use similar strategies.  We found that people with ADHD reported more camouflaging behavior compared to a neurotypical comparison group, but less than autistic people.  Thus, these results indicate that camouflaging is not unique for autism and it is important to be aware of camouflaging strategies in people with ADHD.
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’.
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