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1 – 10 of 113Freya Rumball, Rachel Parker, Ailbhe Elizabeth Madigan, Francesca Happe and Debbie Spain
Autistic individuals are at increased risk of trauma exposure and post-traumatic stress disorder (PTSD). Diagnostic overshadowing, however, often results in PTSD symptoms being…
Abstract
Purpose
Autistic individuals are at increased risk of trauma exposure and post-traumatic stress disorder (PTSD). Diagnostic overshadowing, however, often results in PTSD symptoms being mislabelled as autistic traits. This study aims to develop professional consensus on the identification and assessment of co-occurring PTSD in autistic adults.
Design/methodology/approach
An online modified Delphi design was used to gather professionals’ perspectives on key aspects of the identification and assessment of PTSD in autistic adults. Data were gathered qualitatively in Round 1 and then synthesised using content analysis into a list of statements that were rated in Round 2. Statements reaching 60–79% consensus and additional suggestions were sent out for rating in Round 3. Consensus for the final statement list was set at 80% agreement.
Findings
Overall, 108 statements reached consensus. These form the basis of professional-informed recommendations to facilitate the identification and assessment of PTSD symptoms in autistic adults.
Practical implications
The final Delphi statements provide a framework to assist with the assessment and recognition of traumatic stress reactions in autistic adults presenting to mental health, diagnostic or social services.
Originality/value
To the best of the authors’ knowledge, this is the first study to explore the presentation and identification of PTSD in autistic adults (with and without intellectual disability), using a bottom-up approach informed by professional consensus.
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Phuong Nguyen, Viviana d'Auria and Ann Heylighen
This scoping review aims to (1) summarize research and design writings on residential design for adults on the autism spectrum in peer-reviewed and grey literature, (2) identify…
Abstract
Purpose
This scoping review aims to (1) summarize research and design writings on residential design for adults on the autism spectrum in peer-reviewed and grey literature, (2) identify research gaps in this field and (3) understand the concept of independent living based on this literature.
Design/methodology/approach
A systematic search was conducted in seven databases using 47 search terms related to residence, design and autism. It was supplemented with a manual search for recommended authors and architectural websites.
Findings
A final review of 37 sources highlighted that existing residential design guidelines are supported by weak evidence due to the lack of methods for involving and limited direct contact with autistic adults. Moreover, the needs of people living or working with them tend to be overlooked. Finally, the role of independent living has received little attention in the literature on residential design for adults on the spectrum.
Research limitations/implications
The findings show a need for taking on board autistic people's understanding of independent living. Future research about residential design for autistic adults should be conducted with them, in diverse housing settings, providing nuanced insight into their housing needs and those of the people around them.
Originality/value
This scoping review is the first to provide an overview of what is known about residential design for autistic adults with a focus on the concept of independent living.
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Alexandra Schnabel and Clem Bastow
From the authors’ personal and professional experiences, they have observed that autistic women are uniquely at risk of interpersonal trauma. Given the tendency for autistic women…
Abstract
Purpose
From the authors’ personal and professional experiences, they have observed that autistic women are uniquely at risk of interpersonal trauma. Given the tendency for autistic women to be overlooked in research and practice, this study aims to rectify this by exploring the relevant literature and including the voices of autistic women throughout this paper.
Design/methodology/approach
This study completed a literature review of quantitative and qualitative data relating to exposure to interpersonal trauma in autistic women. This study also reviewed relevant discursive evidence available on in memoirs and reports. This study also included dialogue between us as authors from an auto/“Autie”-ethnographic position.
Findings
Both clinical literature and discursive evidence support the idea that autistic women are uniquely at risk of interpersonal trauma, in particular, sexual victimisation. Explanatory factors are considered. Studies exploring rates of post-traumatic stress disorder (PTSD) were less consistent. Further evidence is required to better understand how autistic women experience and express PTSD and to inform assessment and treatment modifications.
Originality/value
To the best of the authors’ knowledge, this is the first paper to integrate clinical literature and discursive evidence on the topic of interpersonal trauma in autistic women. It provides useful insights into the experiences of autistic women in this space, directions for urgently needed future research and modifications to clinical practice.
Elanor Webb, Benedetta Lupattelli Gencarelli, Grace Keaveney and Deborah Morris
The prevalence of exposure to adversity is elevated in autistic populations, compared to neurotypical peers. Despite this, the frequency and nature of early adverse experiences…
Abstract
Purpose
The prevalence of exposure to adversity is elevated in autistic populations, compared to neurotypical peers. Despite this, the frequency and nature of early adverse experiences are not well understood in autistic adults, with several underlying methodological limitations in the available literature. The purpose of this study is to systematically synthesise and analyse the prevalence of childhood adversity in this marginalised population, in accordance with the adverse childhood experiences (ACEs) framework.
Design/methodology/approach
Peer-reviewed empirical research articles were systematically searched for from electronic databases and screened against established inclusion criteria. Pooled prevalence rates for individual ACE types were calculated.
Findings
Four papers were included (N = 732), all of which used a predominantly or exclusively female sample. Only sexual abuse was reported in all papers, with a pooled prevalence rate of 38%. Physical abuse and emotional abuse were less frequently explored, with two papers reporting on these ACEs, though obtained comparable and higher pooled prevalence rates (39% and 49%, respectively). Pooled prevalence rates could be calculated for neither neglect nor “household” ACEs because of insufficient data. The limited state of the evidence, in conjunction with high levels of heterogeneity and poor sample representativeness found, positions the ACEs of autistic adults as a critical research priority.
Originality/value
To the best of the authors’ knowledge, this study is the first to systematically synthesise the prevalence of early childhood adversities, as conceptualised in accordance with the ACEs framework, in adults with autistic traits.
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Nicholas Andrew Hudson, Jake M. Linnane and Kelly Rayner-Smith
Social media use in autistic people has been identified as a potential avenue for less pressured social contact. Given shifts towards online socialisation, this study aims to…
Abstract
Purpose
Social media use in autistic people has been identified as a potential avenue for less pressured social contact. Given shifts towards online socialisation, this study aims to systematically review the available literature on how autistic people experience and use social media.
Design/methodology/approach
A systematic review was carried out using the preferred reporting items for systematic reviews and meta-analyses system, with relevant literature reviewed and synthesised using a narrative approach. Inclusion criteria included adults and/or adolescents as the sole sample, a focus on autism and social media use as the sole/main topic.
Findings
A total of 1,278 research studies were initially identified; following screening, 15 papers were reviewed. Studies demonstrated some support for the positive role social media can play and presented its use as a smart adaptation for the challenges of neurotypical socialising. For autistic people, social media may provide a balance between meeting the need to be connected to people without the pressure of managing aspects, such as tone of voice or body language.
Research limitations/implications
Most studies were questionnaire-based with substantial threats to validity. Samples were self-selecting, with autism status not always confirmed. Individual studies used a broad approach to the definition of social media, including online gaming and other online activities, precluding firm conclusions being made.
Practical implications
There may be a Goldilocks “just right” level of social media contact that could maximise connectedness to others without impacting negatively on mental health, offline relationships and activities of daily living.
Originality/value
This paper presents a novel account of research from case studies and larger scale questionnaire studies.
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Nathan Keates and Julie Beadle-Brown
Previous studies have confirmed the potential benefits of participating in theatrical improvisation, including improved mental health, well-being, skills and strategy development…
Abstract
Purpose
Previous studies have confirmed the potential benefits of participating in theatrical improvisation, including improved mental health, well-being, skills and strategy development. This study aims to explore the experiences of improv (a subset of theatrical improvisation) for autistic, non-autistic, yet neurodivergent and neurotypical people. In particular, it explores whether participants believe that there have been any benefits from participating in improv.
Design/methodology/approach
Twenty adult participants were recruited using snowball sampling. Semi-structured interviews were conducted and analysed using interpretative phenomenological analysis (IPA) and qualitative content analysis (QCA). IPA explored the autistic lived experience during improv participation, while QCA sought to identify the benefits gained.
Findings
Implementing IPA allowed for the benefits of improv to be embedded into autistic lived experience. This was aggregated into two themes: “life beyond improv” and “social worlds negative impact”. Findings from QCA found five themes: “creativity and opportunities: the arts and workplace”; “acceptance, cognitive flexibility and rolling with it”; “interpersonal, social and communication skills and human connection”; “gains in mental health, quality of life and wellbeing”; and for just autistic participants, “‘I've gone full autistic’ (and can learn why neurotypicals are like they are)”.
Originality/value
To the best of the authors’ knowledge, this is a novel study area that has not been investigated previously.
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Rebecca Day, Luke Simmons, Elizabeth Shade, Jo Jennison, Clare S. Allely and Raja A.S. Mukherjee
Recent research has proposed a specific female phenotype within autism spectrum disorder (ASD). It suggests females exhibit differences in social communication styles with higher…
Abstract
Purpose
Recent research has proposed a specific female phenotype within autism spectrum disorder (ASD). It suggests females exhibit differences in social communication styles with higher levels of camouflaging and compensatory strategies, as well as variance in restrictive repetitive behaviours (RRBs); however, many existing studies have been based on either small, disproportionate or child and adolescent samples, leaving questions about the specific phenotype. This study aims to explore the sex difference and phenotype in a clinic sample of individuals diagnosed with autism.
Design/methodology/approach
A service evaluation of sex/ gender differences on 150 historical ASD assessment reports (75 males, 75 females) using a 103-item questionnaire developed from a quantitative review of existing literature was undertaken.
Findings
Females camouflaged more significantly than males in five different areas (thinking how to act next, preparing conversation in advance, making lists of prompts/social responses, wearing a mask/acting, less monotone voice); however, these were not maintained in post-analysis correction.
Originality/value
This study points the evidence towards a different phenotype of Autism that is more common in women than men rather than a unique female phenotype.
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Anthony Osuna, Daina Tagavi, Katie Sabini and Ty Vernon
The purpose of this paper is to describe the development and pilot of a novel program to support autistic adults with social media use. Social media use among autistic adults has…
Abstract
Purpose
The purpose of this paper is to describe the development and pilot of a novel program to support autistic adults with social media use. Social media use among autistic adults has been associated with increased happiness and closer friendships. However, autistic adults are at risk of social media challenges such as cyber-victimization. To date, no programs exist that specifically support autistic adults with safe and effective social media use. The primary aim of this study was to develop and pilot test a novel social media skills program for feasibility and acceptability. A secondary aim was to explore changes in Facebook activity as a proxy for online social engagement.
Design/methodology/approach
The socialization, education and learning for the internet (SELFI) program was developed by identifying relevant target skills, goals, considerations and evidence-based strategies to help autistic adults with online social communication. The developed SELFI program was then pilot tested with six autistic male young adults to explore initial feasibility (fidelity of delivery, attendance) and acceptability (attrition, enjoyment and programmatic feedback). Facebook data were collected to explore differences in the frequency of likes/reactions, comments and posts after completion of the program.
Findings
Each participant completed all procedures and attended every session. There was no attrition from the program. The average fidelity score for recorded sessions was 85.1%. Most participants endorsed agreement with program enjoyment and that it helped them maintain current relationships. Participant feedback provided valuable information regarding areas of strength and areas that needed improvement. Each participant who completed the study demonstrated increased Facebook engagement across likes/reactions, comments and posts.
Research limitations/implications
Limitations include a small all-male sample, exclusion of adults with intellectual disabilities and adolescents and dependence on Facebook data. Additionally, the developed program did not incorporate feedback from relevant stakeholders, including autistic adults.
Originality/value
To the best of the authors’ knowledge, this is one of the first studies to explore support for autistic adults specifically related to social media use.
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Claire Bates and Rose Matthews
The purpose of this study is to explore the support needs surrounding intimate relationships and sexuality of autistic adults accessing funded social care in England.
Abstract
Purpose
The purpose of this study is to explore the support needs surrounding intimate relationships and sexuality of autistic adults accessing funded social care in England.
Design/methodology/approach
Semi-structured interviews with 15 autistic adults who were accessing funded social care examined their support needs surrounding intimate relationships and sexuality, with subsequent data analysis using reflexive thematic analysis.
Findings
Four themes were generated: Help at hand, but not too close for comfort, No “cookie-cutter rules”: personalised, inclusive approaches, Playing it safe, not leaving it too late, and Autism-informed education and support.
Practical implications
The authors produced an online learning module for social care staff in England on best practice in supporting autistic adults without learning disabilities with relationships and sexuality.
Originality/value
To the best of the authors' knowledge, there has been no other UK-based research published to date on the social care support needs of autistic adults without learning disabilities surrounding relationships, gender and sexuality.
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David B. Nicholas, Theresa Jubenville-Wood, Rosslynn T. Zulla, Katelyn Lowe and Lonnie Zwaigenbaum
The purpose of this study is to examine how the search for transitional services has been characterized as a challenging experience for autistic youth and their families…
Abstract
Purpose
The purpose of this study is to examine how the search for transitional services has been characterized as a challenging experience for autistic youth and their families. Transitional services are reported to be inconsistent and do not address the range of needs that autistic individuals have.
Design/methodology/approach
In this study, qualitative interviews were conducted with autistic individuals (n = 31), their parents/caregivers (n = 23) and transition-based service providers (n = 10).
Findings
Findings invite capacity building across sectors, including working with both the autistic individual and their caregiver, and ensuring targeted services commensurate with individual needs related to autism and ancillary challenges. Implications and recommendations for service and system advancement are offered.
Practical implications
Current services were reportedly insufficient in meeting the needs of autistic individuals as they transitioned into adulthood. Service areas needing to be bolstered include daily life, community engagement and employment. Capacity building and enhanced training are required. Information and communication strategies require advancement.
Social implications
A more responsive system is required, which involves support from many societal sectors (e.g. health, mental health, advanced education, social services, industry, housing and justice) over the lifespan. Policy adjustments and organizational mandates need to be reviewed to better consider the needs of transitioning autistic youth and allocate resources accordingly. Partnerships across stakeholder groups are needed.
Originality/value
This study provides details on a known but not well understood issue of transition to adulthood for autistic adults. This study is unique in providing first-hand data from transitioning autistic adults, with corroborating data from families and service providers.
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