The meaning of autistic movements.

LAY ABSTRACT: What is already known?Moving the body in 'stereotyped', 'repetitive', 'ritualised' or 'unusual' ways is part of the criteria for receiving a diagnosis of autism. However, the reasons for these movements and their personal value are not well understood. Certain ways of moving have become part of a disorder, and have received negative judgements, whereas other movements have not.What this paper adds?We searched online blogs for descriptions of movement written by autistic adults, using their preferred language and definitions. The blog authors said that many types of movement attracted negative judgement, including mis-coordination shown during sports, dancing in unusual places or moving repetitively, such as when stimming. However, movement provided personal benefits, and could enhance thinking and focus, provide meaningful routine, contribute to sensory regulation, release energy, increase body awareness, emotion regulation and strengthen self-identity.Implications for practice and policyMovement could be a well-being resource, used to reduce distraction, overwhelm, confusion and distress for autistic people. This should be considered within personal coping strategies and psychological therapies. The examples provided in this study could inform autism assessments, to ensure that the meanings of movements are considered alongside the appearances of movement. Some movements such as stimming have the same functions as many other ways of moving, including dancing and exercising, which could help to reduce stigma around being autistic if reflected in policy and practice. Improving understanding is important for informing how autism is assessed, and how personal experiences of being autistic are heard.

A Blog-Based Study of Autistic Adults' Experiences of Aloneness and Connection and the Interplay with Well-Being: Corpus-Based and Thematic Analyses.

Background: Autistic adults appear to be more vulnerable to mental ill health, with loneliness being a variable associated with multiple outcomes of poorer well-being. However, a description of meaningful social connection that is suitable for autistic adults is missing from this research, along with a missing understanding of the conditions that contribute to well-being. Methods: In this study, autistic adults' experiences of connectedness and aloneness were systematically searched for within data collected from blogs. This contributed a creative method to hear the viewpoint of autistic adults. Corpus-based and thematic analyses explored the descriptions and contexts of relationships. A total of 16 autistic authors contributed views. Results: Social connection was desired and was achieved through self-acceptance and rejecting deficit-based views of being autistic, and selectively choosing important relationships. Meaningful social connection changed over time, being more difficult to attain in childhood, and benefiting from self-learning and effortfully applying neuro-normative skills in social communication. Loneliness was only described alongside other causes of unhappiness and was not associated with being autistic. Conclusions: The findings offer some explanation for the high estimates of both loneliness and mental ill health for autistic adults. We consider the implications for autistic individuals, clinicians, educators, and researchers. We are also cautious not to imply that these views reflect all autistic people. The findings suggest that improvements are needed in society to share communication differences and relationship expectations for autistic individuals to be accepted and valued.

Why is this an important issue?: Autistic adults appear to be vulnerable to mental ill health, though this is often misunderstood. Being lonely, or dissatisfied with social relationships, has been linked to poorer well-being. However, most research uses questionnaires to assess loneliness, which make assumptions that need updating for autistic adults. For example, having fewer friends does not necessarily mean feeling lonely. We are also missing an understanding of what contexts make autistic people feel alone or connected. What was the purpose of this study?: The purpose of this study was to hear the experiences of aloneness and social connectedness as described personally by autistic adults. We chose to use data from online blogs, because the topics and descriptions were chosen through personal motivation of the authors and minimize assumptions made by researchers. What did the researchers do?: We created a dataset of descriptions of social connectedness from the top trending blogs written by autistic authors. We used systematic search methods to do this. We chose 33 search terms that describe social connection and aloneness, as not to presume that autistic people are lonely, such as "friendships" and "belonging." We analyzed the descriptions first using a computer program to find patterns in language, including the most frequent descriptions. This is called corpus-based analysis. It was chosen to reduce the bias that researchers can introduce when they look for themes in what people talk about. Second, we used a method called thematic analysis to explore the shared meanings in the descriptions, which helped us to understand the contexts of relationships. We collected views from 16 autistic authors. What were the results of the study?: The results showed that the blog authors desired social connection and had meaningful relationships. This was achieved through self-acceptance and self-compassion. Authors said that they learned about themselves over time. They learnt social skills that they thought were expected by non-autistic peers. They also rejected the view that being autistic was a negative thing. Loneliness was described only when people had other things making them unhappy, such as anxiety or depression, and was not associated with being autistic more generally. What do these findings add to what was already known?: Unhappiness with social relationships seems to occur in certain circumstances, which change over time. Importantly, these autistic authors said they felt connected when they had a positive identity, were understood by the people important to them, and were able to make choices about how to invest in relationships. What are potential weaknesses in the study?: We only heard from a small sample of autistic people, likely those with good internet skills who were interested in social media. This might be a group of people who are motivated to connect with other people. Also, we could not follow up on the meanings of what was written because we had no interaction with participants. How will these findings help autistic adults now or in the future?: Within health care, there seems to be a risk of misunderstanding autistic clients when practitioners use questionnaires to assess well-being or loneliness, when the questionnaires are not created for autistic people. We recommend not assuming loneliness, but instead, asking whether feeling lonely occurs under certain circumstances. There is more for clinicians and researchers and society to do to share the responsibility for social communication differences.

Compassionate pedagogy for neurodiversity in higher education: A conceptual analysis.

The neurodiversity paradigm challenges pathologising accounts of neurodevelopmental differences, including autism, attention deficit disorder (ADHD), dyslexia, developmental language disorder (DLD) and others. From a neurodiversity perspective, these differences in the way people perceive, learn about and interact with the world are conceptualised as naturally occurring cognitive variation, akin to biodiversity in the natural environment, which may bring unique strengths and challenges for individuals. An implication of this approach is that interventions designed to create contexts in which neurodivergent people can thrive are needed, in addition to those that seek to ameliorate individual-level difficulties. In this conceptual review, we consider how higher education can offer a context in which cognitive diversity can be noticed, welcomed and accepted with warmth. In universities, neurodiversity is one dimension of difference within an increasingly diverse student population, which overlaps - but is not synonymous - with disability. We argue that improving experience and outcomes for neurodivergent students should be a priority for universities aiming to produce graduates equipped to tackle the complex problems of contemporary society. Drawing on the foundational principles of compassion-focused psychological therapies, we consider how compassion can be enacted within interpersonal interaction, curriculum design, and leadership culture in universities. We apply the insights of double empathy theory to the problem of overcoming barriers of difference in the classroom. Finally, we make recommendations for Universal Design for Learning (UDL) and strengths-based pedagogical approaches, which create a fit-for-purpose educational environment for the widest possible range of learners. This realignment with the neurodiversity paradigm offers an antidote to bolt-on provisions for students who differ from the neuro-normative, and might enable neurodivergent thinkers to flourish within and beyond higher education.

Workplace Adjustments for Autistic Employees: What is 'Reasonable'?

Autistic adults are inadequately supported in the workplace. This study sought a definition of 'reasonable' and explored facilitators and barriers to employers making reasonable adjustments. 98 employers and employees across a UK city completed a survey; 15% identified as being autistic. Qualitative data were analysed using framework analysis. Reasonable adjustments were defined as having a positive impact on autistic employees' wellbeing and work outputs without being detrimental to non-autistic employees or the organisation; they were low cost and easily implemented. Recommendations were for autism awareness training, low-stimulus work spaces, clear instructions and flexible working hours. A definition of reasonable is added to the literature, with suggestions of where to invest support efforts. Recommendations mostly apply to the education sector.

Corrigendum: Compassionate pedagogy for neurodiversity in higher education: a conceptual analysis.

[This corrects the article DOI: 10.3389/fpsyg.2023.1093290.].

Meeting the Emotional Needs of Hospital Patients With Dementia: A Freelisting Study With Ward Staff.

BACKGROUND AND OBJECTIVES: People with dementia are vulnerable when in hospital, with serious risks to their physical and emotional well-being. Hospital staff are expected to understand and respond to the emotions of the patient; however, it is not known how this can be achieved. We provide a concise description of achievable emotion-focused care for patients with dementia. DESIGN AND METHODS: Exploratory qualitative interviews were conducted with a whole U.K. hospital ward providing dementia care, constituting 47 staff members. Staff responded to four questions using ethnographic freelisting. They listed (a) all the ways they notice the emotional distress of patients with dementia, (b) the causes of emotional distress, (c) all the ways they respond, and (d) the responses that seem to work. Cultural consensus analysis was applied. RESULTS: A single-factor solution for each question indicated a consensus approach to emotional distress. Emotional distress was noticed from agitation (Smith's saliency score, 0.418), crying (0.350), and increased mobilizing (0.238). The main causes of distress were the unfamiliar hospital environment (0.355) and not knowing what is happening (0.313). The most effective ways to respond to emotional distress required knowing the person (0.299), talking (0.283), and being with the person (0.269). DISCUSSION AND IMPLICATIONS: The findings expand what is understood of behavioral and psychological symptoms of dementia; these communicated emotional distress with well-understood causes. Prioritized ways of responding to emotional distress described person-centered care. The results offer a menu of options for providing emotionally responsive care for patients with dementia in hospital. Future research should evaluate the care described.

Importance of personal and professional experience for hospital staff in person-centred dementia care: a cross-sectional interview study using freelisting in a UK hospital ward.

OBJECTIVE: To detail how hospital staff with differing personal and professional caregiving experiences approach the care of patients with dementia, in order to make practical recommendations for practice. DESIGN: Cross-sectional qualitative interviews. SETTING: A UK hospital ward providing dementia care. PARTICIPANTS: A complete hospital ward staff team, constituting 47 hospital staff from 10 professions. METHODS: Hospital staff were asked to list their approaches to emotion-focused care in individual, ethnographic freelisting interviews. Cultural consensus analysis was used to detail variations in approaches to dementia care between staff subgroups. MAIN OUTCOME MEASURES: The most salient listed descriptions of care emphasised by staff members with personal experience of dementia caregiving when compared with staff members without such experience, and descriptions from staff newer to the profession compared with staff with more years of professional dementia caregiving experience. RESULTS: Subgroups of hospital staff showed different patterns of responses both in how they noticed the emotional distress of patients with dementia, and in prioritised responses that they deemed to work. Hospital staff with professional experience of dementia caregiving and staff with fewer years of professional experience prioritised mutual communication and getting to know each patient. CONCLUSIONS: Subgroups of hospital staff with personal caregiving experiences and fewer years of professional care experience were more likely to describe person-centred care as their routine ways of working with patients with dementia. It is recommended that personal experience and the novice curiosity of hospital staff be considered as valuable resources that exist within multidisciplinary staff teams that could enhance staff training to improve the hospital care for patients with dementia.

Emotional distress with dementia: A systematic review using corpus-based analysis and meta-ethnography.

OBJECTIVE: More understanding is needed about the emotional experiences of dementia from the perspective of the individual. This understanding can then inform the provision of health care to meet individual needs. This systematic review aimed to present all available descriptions of emotional distress and explanations for emotional distress experienced by individuals with dementia, articulated personally and by others. METHODS: A systematic mixed-method review identified literature that was screened and quality appraised. Data were analysed quantitatively and qualitatively using corpus-based methods and meta-ethnography. RESULTS: The 121 included studies showed that individuals with dementia have expressed emotional distress comprehensibly. Family, professional caregivers, clinicians, and academic writers have also observed and described extreme emotional experiences. Feeling fearful and lonely were predominant and show the importance of anxiety in dementia. Explanations for emotional distress included threats to universal, human needs for identity, belonging, hope, and predictability. CONCLUSIONS: The variable and personal emotional experiences of individuals with dementia are well described and should not continue to be overlooked. Limitations, future research, and clinical implications are discussed.

Where is the happiness in dementia?

Our current research aims to explore how the emotional experiences of individuals with dementia are understood, and to improve the design and delivery of care interventions. A preliminary, incidental, finding from our initial systematic literature search is reported here. Increasingly, the experience of dementia is understood from the viewpoint of the individual. However, this is not reflected in the body of research literature, which is predominantly orientated towards detailing the neuropsychiatric symptoms of mood, cognition, behavior, or physiology and "managing" the condition (Cerejeira et al., 2012). In this way, the whole and varied experiences of dementia are not recognized. There is a distance between these differing perspectives of dementia in the available literature.