Autistic well-being: a scoping review of scientific studies from a neurodiversity-affirmative perspective

Background Historically, autism research has focused on the overrepresentation of physical and mental health problems and decreased psychological well-being in autistic people without intellectual impairment. There is a paucity of studies emphasizing what positively contributes to the well-being of autistic people. In line with a recent shift toward investigating autistic health more comprehensively, we conducted a scoping review to map emerging data on autistic well-being within a biopsychosocial context. Methods A Lived Experience Advisory Panel coproduced the review question. The research was collated using Preferred Items for Systematic Reviews and Meta-analyses guidelines for scoping reviews (PRISMA-ScR) with predefined selection criteria. Research based on the deficit-based view of autism and not within the core principles of the neurodiversity-affirmative movement was excluded. Results We collated 89 studies, with biological (N = 8), psychological (N = 70), and social (N = 61) factors. Alongside an increase in affirmation-focused outputs, we identified several themes: ‘Impact of Diagnosis and Self-Identity’, ‘Self-empowering Characteristics’, ‘Cognition’, ‘Role of the Wider Community’, ‘Role of Relationships and Forms of Support’, and ‘Social Adaptations and Lessons from COVID-19’. Conclusions While neurodiversity-affirmative perspectives on autistic well-being are increasingly recognized as an important research area, there is a need for a more stringent exploration of interlinking biopsychosocial determinants. A focused approach within future research will enhance understanding of the promotion of autistic well-being.</p

Autistic well-being: a scoping review of scientific studies from a neurodiversity-affirmative perspective

Background Historically, autism research has focused on the overrepresentation of physical and mental health problems and decreased psychological well-being in autistic people without intellectual impairment. There is a paucity of studies emphasizing what positively contributes to the well-being of autistic people. In line with a recent shift toward investigating autistic health more comprehensively, we conducted a scoping review to map emerging data on autistic well-being within a biopsychosocial context. Methods A Lived Experience Advisory Panel coproduced the review question. The research was collated using Preferred Items for Systematic Reviews and Meta-analyses guidelines for scoping reviews (PRISMA-ScR) with predefined selection criteria. Research based on the deficit-based view of autism and not within the core principles of the neurodiversity-affirmative movement was excluded. Results We collated 89 studies, with biological (N = 8), psychological (N = 70), and social (N = 61) factors. Alongside an increase in affirmation-focused outputs, we identified several themes: ‘Impact of Diagnosis and Self-Identity’, ‘Self-empowering Characteristics’, ‘Cognition’, ‘Role of the Wider Community’, ‘Role of Relationships and Forms of Support’, and ‘Social Adaptations and Lessons from COVID-19’. Conclusions While neurodiversity-affirmative perspectives on autistic well-being are increasingly recognized as an important research area, there is a need for a more stringent exploration of interlinking biopsychosocial determinants. A focused approach within future research will enhance understanding of the promotion of autistic well-being.</p

A model linking emotional dysregulation in neurodivergent people to the proprioceptive impact of joint hypermobility

No description supplied</p

Data for manuscript "Aligning Dimensions of Interoceptive Experience "ADIE" against anxiety in autistic adults: A superiority randomized controlled trial"

Data for paper "Interoceptive training to target anxiety in autistic adults (ADIE): A single-centre, randomized controlled trial" in EClinicalMedicine (July 2021)Excel workbook containing demographic, behavioural, and self-report data from the "Aligning Dimensions of Interoceptive Experience "ADIE" against anxiety in autistic adults" superiority randomized controlled trial.Glossary with variable descriptions included.Abstract:Background This trial tested if a novel therapy, Aligning Dimensions of Interoceptive Experience (ADIE), reduces anxiety in autistic adults. ADIE targets the association of anxiety with mismatch between subjective and behavioural measures of an individual’s interoceptive sensitivity to bodily signals, including heartbeats. Methods In this superiority randomized controlled trial, autistic adults (18-65 years) from clinical and community settings in Southern England were randomly assigned (1:1) to receive six sessions of ADIE or an active ‘exteroceptive’ control therapy (emotional prosody identification). Researchers conducting outcome assessments were blind to allocation. ADIE combines two modified heartbeat detection tasks with performance feedback and physical activity manipulation that transiently increases cardiac arousal. Participants were followed-up one-week (T1) and 3-months post-intervention (T2). The primary outcome was Spielberger Trait Anxiety Score (STAI-T) at T2. Outcomes were assessed on an intention-to-treat basis using multiple imputation for dealing with missing values. This trial was registered at International Standard Randomized Controlled Trial Registry, ISRCTN14848787. Findings Between July 01, 2017, and December 31, 2019, 121 participants were randomly allocated to ADIE (n=61) or prosody (n=60) intervention groups. Data at T1 was provided by 85 (70%) participants (46 [75%] ADIE; 39 [65%] prosody). Data at T2 was provided by 61 (50%) participants (36 [59%] ADIE; 25 [42%] prosody). One adverse event (cardiac anxiety following ADIE) was recorded. A statistically significant group effect of ADIE on trait anxiety continued at T2 (estimated mean difference 3∙23 [95% CI 1∙13 to 5∙29]; d=0∙30 [95% CI 0∙09 to 0∙51]; p=0∙005) with 31% of ADIE group participants meeting trial criteria for recovery (compared to 16% in the control group). Interpretation ADIE can reduce anxiety in autistic adults, putatively improving regulatory control over internal stimuli. With little reliance on language and emotional insight, ADIE may constitute an inclusive intervention. Funding MQ: Transforming Mental Health PsyImpact Grant.</div

OP0194 Inflammation-induced pain and fatigue in fibromyalgia and me/cfs and role of variant connective tissue

Background Fibromyalgia and ME/CFS are multifaceted conditions with overlapping symptoms(1); the pathophysiological mechanisms are under debate. It remains unclear whether dysregulated inflammation, induced either by an exogenous stimulus (eg a virus or other stressor), or autoimmunity, is of prime importance [2].Objectives 1. To determine in a novel human model the effects of an in vivo inflammatory challenge in the induction of pain and fatigue in fibromyalgia and ME/CFS compared to controls.2. Explore potential mediators and moderators involved.Methods Data were available for 48 patients with confirmed diagnoses of Fibromyalgia and/ or ME/CFS and 22 matched controls, who had undergone a placebo controlled inflammatory challenge (typhoid vaccination) as part of ISRCTN78820481. Participants underwent full research diagnostic evaluation including a hypermobility assessment. Subjective pain and fatigue were assessed after saline injection and typhoid vaccination (VAS). Linear regression models were used to explore predictors, with adjustment for potential confounders (age/gender) and baseline levels as appropriate. Mediation analyses (looking for mechanistic effects) were conducted according to the method of Hayes (3) and mediation considered significant if bootstrapped confidence intervals of the estimated indirect effect did not cross zero. In these mediation analyses predictor variable was group membership (patient or control), outcome variable was change in 1) pain and 2) fatigue induced by challenge and mediators/moderators included change in IL-6 induced by inflammatory challenge and hypermobility features.Results Being a patient rather than control significantly predicted inflammation-induced fatigue (B=14.89 (95%CI 3.29-26.50), t=2.56, p=0.013) and pain (B=12.88 (95%CI 0.65-25.10), t=2.11, p=0.039) after adjusting for levels induced by placebo. Induced pain was independently predicted by level of IL-6 induced by inflammatory challenge (B=23.44 (95%CI 5.15-41.72),t=2.57, p=0.013) as was induced fatigue (B=10.63 (95%CI 2.84-18.41), t=2.73, p=0.008) Mediated moderation analyses suggested the link to induced pain and fatigue through induced inflammation was associated with hypermobility features (Index of mediated moderation 11.02 (95%CI 1.45-22.73) and 6.20 (95%CI 0.07-13.64) respectively))Conclusion To our knowledge this is the first human study to evaluate directly the effect of an exogenous inflammatory challenge (typhoid vaccination) in a combined group of Fibromyalgia and ME/CFS patients. Il-6 was shown to be a critical mediator. This work strongly supports the hypothesis that inflammation is key to the pathophysiology of ME/CFS. We are evaluating associated CNS inflammation in the model, as well as other associations, such as autonomic dysfunction and hypermobility. Further understanding the mediators involved in the condition should in future open the way to testing targeted anti-inflammatory therapy.References [1]Eccles JA, Thompson B, Themelis K, Amato ML, Stocks R, Pound A, et al. Beyond bones: The relevance of variants of connective tissue (hypermobility) to fibromyalgia, ME/CFS and controversies surrounding diagnostic classification: an observational study. Clin Med (Lond). 2021;21(1):53-8.[2]Eccles JA, Davies KA. The challenges of chronic pain and fatigue. Clin Med (Lond). 2021;21(1):19-27.[3]Hayes AF. Partial, conditional, and moderated moderated mediation: Quantification, inference, and interpretation. Commun Monogr. 2018;85(1):4-40.</p

“I'm trying to reach out, I'm trying to find my people”: a mixed-methods investigation of the link between sensory differences, loneliness, and mental health in Autistic and Nonautistic adult

Background: rates of loneliness are substantially higher among autistic compared with nonautistic individuals. This observation refutes the persistent stereotype that autistic individuals are not motivated to seek meaningful social relationships. More plausibly, social environments systematically exclude people with higher levels of sensory differences, impeding on opportunities for autistic individuals to form meaningful relationships. In this study, we sought to quantify the level of distress associated with loneliness (Study A) and provide complementary qualitative insight into experiences of loneliness in relationship to sensory differences in autistic adults (Study B). Methods: in Study A, N = 209 participants completed a range of self-report questionnaires. In Study B, nine autistic adults took part in 10-minute unstructured dyadic conversations around the topic of loneliness. We derived a qualitative understanding of autistic individuals' experience of loneliness, enriched by inductive and deductive analyses. Results: in Study A, the autistic group showed significantly higher levels of loneliness, loneliness distress, anxiety, depression, and sensory reactivity. We found significant positive correlations between variables, but no group differences in differential relationships. The effect of sensory reactivity on anxiety and depression was mediated by levels of loneliness in both groups. In Study B, autistic participants described the pain of feeling lonely and socially disconnected, while simultaneously experiencing a need for restorative solitude after social overstimulation. Discussion: our results indicate that sensory differences are related with higher loneliness and associated poor mental health in both autistic and nonautistic adults. This effect was exacerbated in autistic adults due to higher levels of sensory reactivity. First-hand reports from autistic adults on intense loneliness and the obstructive role of sensory environments refute stereotypes about a lack of social motivation in autistic adults. We conclude that to enable meaningful and inclusive social interaction, a societal effort is needed to create spaces that consider the sensory needs of all neurotypes.</p

Data for article ‘‘I’m Trying to Reach Out, I’m Trying to Find My People’’: A Mixed-Methods Investigation of the Link Between Sensory Differences, Loneliness, and Mental Health in Autistic and Nonautistic Adults

BackgroundMethodsResultsDiscussion Data set for Study A in paper ‘‘I’m Trying to Reach Out, I’m Trying to Find My People’’: A Mixed-Methods Investigation of the Link Between Sensory Differences, Loneliness, and Mental Health in Autistic and Nonautistic Adults published in Autism in Adulthood This is a sub-study of "Aligning Dimensions of Interoceptive Experience "ADIE" against anxiety in autistic adults: A superiority randomized controlled trial": https://figshare.com/s/5e713b5a4e37c77923e0 Excel workbook containing demographic and self-report data from a sub-study of the ADIE trial. Glossary with variable descriptions included. Abstract: Rates of loneliness are substantially higher among autistic compared to non-autistic individuals. This observation refutes the persistent stereotype that autistic individuals are not motivated to seek meaningful social relationships. More plausibly, social environments systematically exclude people with higher levels of sensory differences, impeding on opportunities for autistic individuals to form meaningful relationships. Here, we sought to quantify the level of distress associated with loneliness (Study A) and provide complementary qualitative insight into experiences of loneliness in relationship to sensory differences in autistic adults (Study B). In Study A, N=209 participants completed a range of self-report questionnaires. In Study B, nine autistic adults took part in ten-minute, unstructured dyadic conversations around the topic of loneliness. We derived a qualitative understanding of autistic individuals’ experience of loneliness, enriched by inductive and deductive analyses. In Study A, the autistic group showed significantly higher levels of loneliness, loneliness distress, anxiety, depression, and sensory reactivity. We found significant positive correlations between variables, but no group differences in differential relationships. The effect of sensory reactivity on anxiety and depression was mediated by levels of loneliness in both groups. In Study B, autistic participants described the pain of feeling lonely and socially disconnected, while simultaneously experiencing a need for restorative solitude after social overstimulation. Our results indicate that sensory differences are related with higher loneliness and associated poor mental health in both autistic and non-autistic adults. This effect was exacerbated in autistic adults due to higher levels of sensory reactivity. First-hand reports from autistic adults on intense loneliness and the obstructive role of sensory environments refute stereotypes about a lack of social motivation in autistic adults. We conclude that to enable meaningful and inclusive social interaction, a societal effort is needed to create spaces that consider the sensory needs of all neurotypes.</p

A systematic literature review on the clinical efficacy of low dose naltrexone and its effect on putative pathophysiological mechanisms among patients diagnosed with fibromyalgia

Background: Low dose naltrexone (LDN) is used off-label by many individuals with fibromyalgia to help manage their pain. There is no current systematic literature review summarising the evidence to support this use of LDN. The objectives of this study were to evaluate if patients with fibromyalgia prescribed LDN have reduced pain scores and greater quality of life compared with those allocated to placebo in randomized controlled trials. Secondly to determine if changes in inflammatory markers and brain structure and function are observed among patients with fibromyalgia taking LDN. Methods: Systematic literature searches were conducted in MEDLINE, Embase Classic + Embase, APA PsychInfo, and The Cochrane Library from inception to May 2022. Reference lists from the selected papers were cross-checked with database search results. Results: Three studies met our inclusion criteria for the assessment of efficacy, and two studies on potential LDN mechanisms. Results indicated some evidence to suggest LDN reduces pain and increases quality of life. One study reported baseline erythrocyte sedimentation rate (ESR) predicted LDN response (=30% reduction in fibromyalgia symptoms) and a second study showed plasma concentrations of inflammatory biomarkers were lower after LDN treatment. To our knowledge, there are no brain imaging studies reporting the effect of LDN in patients with fibromyalgia. All studies were based on small sample sizes, were restricted to women and the risk of bias was assessed to be high. There is also some evidence of publication bias. Conclusion: The strength of evidence from randomized controlled trials to support the use of LDN among patients with fibromyalgia is low. Two small studies suggest ESR and cytokines may be involved in the mechanism by which LDN exerts its effects. Two trials (INNOVA and FINAL) are currently in progress, but further work is needed among men and different ethnic groups

Is joint hypermobility linked to self-reported non-recovery from COVID-19? Case–control evidence from the British COVID Symptom Study Biobank

What is the clinical problem?The COVID-19 pandemic and the burden of subsequent limited recovery from COVID-191 present some of the greatest clinical challenges of a generation. Such individuals not fully recovered from COVID-19 may self-identify under the collective patient-advocated term ‘long COVID’ and/or meet one of the various clinical definitions created to describe persistent symptoms. National data from March 2023 indicate that around 3% of the UK population had not recovered fully from COVID-19 infection. The most common associated symptoms are fatigue (72%), difficulty concentrating (51%), muscle aches/pain (49%) and shortness of breath (48%). However, more than 200 symptoms, expressed across multiple organ systems, are associated with delayed recovery following acute COVID-19 infection. A history of infection with COVID-19 is now commonplace, so a precise and mechanistic understanding of factors that predispose to enduring symptoms and limit recovery will help design and deliver effective healthcare to improve the quality of life of millions of affected individuals worldwide. Evidently, the presentation of long COVID is heterogeneous. These distinct profiles need further characterisation in order to design personalised care and to target effective treatment across populations and age groups.What do we know about long COVID at this point?In addition to demographic factors, notably female sex, the likelihood of developing long COVID appears to be increased by the presence of pre-existing activity-limiting health conditions or disabilities. Fibromyalgia, irritable bowel syndrome, migraine, anxiety, depression and back pain are among a number of conditions identified as raising the risk of long COVID. However, other studies on long COVID have failed to find specific associations, particularly in relation to pre-existing affective disorders. There is growing awareness of the symptomatic overlap with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), in which viral infection is often implicated as a trigger. Indeed, such research may help elucidate the aetiology of long COVID. Moreover, cardiovascular autonomic dysfunction, particularly postural orthostatic tachycardia syndrome (POTS), may be precipitated by COVID-19 and expressed in long COVID. POTS is a chronic and often disabling disorder characterised by orthostatic intolerance with an excessive increase in heart rate without hypotension during upright posture. Patients often experience a constellation of other typical symptoms overlapping with long COVID including fatigue and exercise intolerance, and it is established that the onset of POTS may be precipitated by immunological stressors. A variety of pathophysiologies are involved in the abnormal postural tachycardia response; however, the precise aetiology of the syndrome is incompletely understood and is undoubtedly multifaceted. Indeed, the presence of POTS is considered to be a major sub-phenotype of long COVID, with an estimated prevalence of 30–75% in symptomatic patients, depending on methodology. These conditions (POTS, ME/CFS) are archetypes of seemingly complex poorly-understood multisystem illnesses, alongside hypermobility spectrum disorder (HSD) and Ehlers–Danlos syndrome, which we discuss further below. The mechanisms and pathobiology behind the association of long COVID with these multiple co-occurring conditions are currently poorly understood. However, convergent biological mechanisms, including dysregulated autonomic, inflammatory and metabolic processes, are increasingly implicated in the expression and maintenance of long COVID. Understanding and managing such complexity can be challenging to clinicians who may resort to heuristic classifications such as ‘functional’ disorder. As a consequence, many patients report stigmatisation and can wait years for a diagnosis to access appropriately targeted and potentially effective treatment. Similar perceptions appear to be emerging in relation to long COVID. This may compromise the planning and delivery of cost-effective and timely therapy, both at the level of the individual patients and the level of healthcare service provision.There is growing interest in how variant connective tissue (often recognised by the presence of generalised joint hypermobility (GJH)) may represent a common constitutional factor predisposing to such complex multisystem conditions and disorders. GJH is a characteristic marker of hereditary disorders of connective tissue, which ultimately compromises a matrix of proteins that includes collagens, elastins, fibrillins and tenascins. Joint hypermobility is typically more common in females and declines with age. GJH itself is not necessarily a medical problem, but certain clinical phenotypes, notably hypermobile Ehlers–Danlos syndrome (hEDS; previously known as EDS hypermobility type/EDS type-III) and hypermobility spectrum disorder (HSD) are associated with clinically significant issues, including chronic disabling fatigue and dysautonomia. Around 20% of the UK population fulfil the criteria for GJH as an indicator of variant connective tissue structure. However, less clear is whether individuals with GJH are predisposed to COVID-19 infection and impaired recovery.</p