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Article
Publication date: 21 December 2023

Freya 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.

Details

Advances in Autism, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 24 April 2024

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.

Details

Advances in Autism, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 27 February 2024

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.

Details

Advances in Autism, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 16 April 2024

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.

Details

Advances in Autism, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 16 April 2024

Adam Clifford and Deena Camps

A region’s transforming care partnership identified that autistic adults without an intellectual disability (ID) may be falling through gaps in services when presenting with a…

Abstract

Purpose

A region’s transforming care partnership identified that autistic adults without an intellectual disability (ID) may be falling through gaps in services when presenting with a significant emotional and/or behavioural need in the absence of a mental health diagnosis. The region’s intensive support teams (ISTs) for adults with ID therefore piloted a short-term “behavioural support service” for this population. The purpose of this paper is to evaluate this pilot.

Design/methodology/approach

This study represents a mixed-methods service evaluation over a four year pilot period. The quantitative component examined referral rates and demographic data of accepted and declined referrals; and length of referral episodes and Health of The Nation Outcomes Scores (HoNOS) for accepted referrals. The qualitative component used thematic analysis to identify key themes relating to reasons for referral, clinical/therapeutic needs, and the models of support that most informed assessments and interventions at individual and systems levels.

Findings

The ISTs accepted 30 referrals and declined 53. Most accepted referrals were male (83%), and under 24 years old (57%). Average HoNOS scores were above the thresholds generally associated with hospital admission. Key qualitative themes were: transitional support; sexual risks/vulnerabilities; physical aggression; domestic violence; and attachment, trauma and personality difficulties. Support mostly followed psychotherapeutic modalities couched in trauma, attachment and second- and third-wave cognitive behavioural therapies. Positive Behaviour Support (PBS) did not emerge as a model of preference for service users or professionals.

Originality/value

This project represents one of the first of this type for autistic adults without an ID in the UK. It provides recommendations for future service development and research, with implications for Transforming Care policy and guidance.

Details

Advances in Autism, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 29 August 2023

Gail Teresa Hopkins

The purpose of this research is to investigate the acceptance and support of neurodiverse people in society, with a focus on autism, and to use this to propose a framework to…

56

Abstract

Purpose

The purpose of this research is to investigate the acceptance and support of neurodiverse people in society, with a focus on autism, and to use this to propose a framework to enhance inclusivity that can inform pedagogy within the education sectors.

Design/methodology/approach

Three case studies from higher education have been presented and mapped onto a multi-dimensional spectrum of characteristics normally associated with autistic people. Further examples have been taken from the general population and these have been used, along with user scenarios to propose a framework for inclusivity.

Findings

A framework, the human spectrum, has been proposed which encompasses all of society, regardless of diagnoses and within which people have mobility in terms of their characteristics. It is proposed that this framework should be incorporated into pedagogy in primary, secondary and tertiary education so that teaching and assessment is inclusive and so that people’s understanding of human nature is built from an early age to counter stigma and herd mentality, or othering.

Social implications

The contribution of this paper could have significant implications for society as the framework provides a structure to enable people to consider others with new perspectives.

Originality/value

The framework proposed provides a new and original way of shaping the way people think within the education sector and elsewhere.

Details

Journal of Applied Research in Higher Education, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 2050-7003

Keywords

Article
Publication date: 22 January 2024

Matthew David Phillips, Rhian Parham, Katrina Hunt and Jake Camp

Autism spectrum conditions (ASC) and borderline personality disorder (BPD) have overlapping symptom profiles. Dialectical behaviour therapy (DBT) is an established treatment for…

Abstract

Purpose

Autism spectrum conditions (ASC) and borderline personality disorder (BPD) have overlapping symptom profiles. Dialectical behaviour therapy (DBT) is an established treatment for self-harm and BPD, but little research has investigated the outcomes of DBT for ASC populations. This exploratory service evaluation aims to investigate the outcomes of a comprehensive DBT programme for adolescents with a diagnosis of emerging BPD and a co-occurring ASC diagnosis as compared to those without an ASC diagnosis.

Design/methodology/approach

Differences from the start to end of treatment in the frequency of self-harming behaviours, BPD symptoms, emotion dysregulation, depression, anxiety, the number of A&E attendances and inpatient bed days, education and work status, and treatment non-completion rates were analysed for those with an ASC diagnosis, and compared between those with an ASC diagnosis and those without.

Findings

Significant medium to large reductions in self-harming behaviours, BPD symptoms, emotion dysregulation and inpatient bed days were found for those with an ASC diagnosis by the end of treatment. There were no significant differences between those with an ASC and those without in any outcome or in non-completion rates. These findings indicate that DBT may be a useful treatment model for those with an ASC diagnosis, though all results are preliminary and require replication.

Originality/value

To the best of the authors’ knowledge, this is the first study to report the outcomes of a comprehensive DBT programme for adolescents with an ASC diagnosis, and to compare the changes in outcomes between those with a diagnosis and those without.

Details

Advances in Autism, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 28 February 2024

Emma May

The literature review explores how multidisciplinary approaches based on critical pedagogy and participatory research can provide frameworks for equitable partnerships and genuine…

Abstract

Purpose

The literature review explores how multidisciplinary approaches based on critical pedagogy and participatory research can provide frameworks for equitable partnerships and genuine participation in educational design and research practices. Additionally, the essay aims to expand understandings of equitable engagement within educational research and design based on principles from critical pedagogy.

Design/methodology/approach

The essay draws from diverse literature in the learning sciences, health informatics, industrial design, disability studies, ethnic studies, rehabilitation science, and to a lesser extent HCI research to understand how critical pedagogy and participatory research methods can provide useful frameworks for disabled peoples' equitable engagement and genuine participation in educational research and design. The literature reviewed in the paper concern topics such as participatory approaches to community development with disabled adults, the implementation of university-initiated community partnerships, participatory research with students and disabled people, and the importance of culturally-responsive research practices. The design literature in this review explores various arenas such as the co-design of assistive technologies with disabled children and adults and the design of curricula for students with and without disabilities. This review focuses on research practices that engender disabled peoples' participation in educational research and design, with focus on developing multidisciplinary frameworks for such research.

Findings

The literature review concludes that participatory research methods and critical pedagogy provide useful frameworks for disabled peoples’ participation in educational design and research practices. Critical pedagogy and participatory design allow for the genuine participation of disabled people in the research process.

Social implications

Emphases on collaboration and collective knowledge-building in social transformation are present in scholarship concerning critical pedagogy, participatory research, and disability studies. However, these connections have been routinely underexplored in the literature. This paper aims to underscore these integral connections as a means to build solidarity between disabled and other marginalized people.

Originality/value

The connections between participatory research methods, critical pedagogy, and disability studies have been previously underexplored. The literature review proposes a combined approach, which has the potential to radically transform multiple realms of research beyond the learning and information sciences.

Details

Information and Learning Sciences, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 2398-5348

Keywords

Open Access
Article
Publication date: 11 March 2024

Aideen Ruttledge

At present, there is no reference to Attention Autism (AA) as a framework and therapeutic tool with autistic children in occupational therapy (OT) literature. By way of…

Abstract

Purpose

At present, there is no reference to Attention Autism (AA) as a framework and therapeutic tool with autistic children in occupational therapy (OT) literature. By way of introducing AA as a potential intervention to the OT community, this study aims to investigate the extent to which participation in a two-day AA training could contribute to increasing confidence and inspire changes in practice for Irish occupational therapists (OTs) supporting autistic children.

Design/methodology/approach

A pilot study design with mixed qualitative and quantitative methods was used to evaluate the impact of a two-day AA training on six OTs. The OTs support autistic children throughout Ireland across public, private and voluntary sectors. They completed brief, non-standardised questionnaires 2 weeks before the training (Time 1) and again 12 weeks post (Time 2) training session. At Time 2, additional exploratory questions were answered by OTs regarding their use of AA in practice.

Findings

This explorative study’s quantitative findings presented percentage change increases within three areas of confidence for all OTs. These include establishing attention, motivating and developing functional skill goals with autistic children. One of the participants did not score any change in confidence in a fourth area, building rapport, however, the five other participants scored percentage change increases. Qualitative data provided by participants showed that they were implementing AA in practice since attending the training. Five of the participants reported positive experiences of using AA and one participant reported the programme was not suitable for her caseload because of their level of understanding and need.

Research limitations/implications

This was a small, exploratory, practice-based study. As this is the first study exploring this area of practice for OTs, to the best of the authors’ knowledge, there were no standardised methods of assessment available, therefore a self-designed survey was used by the author which had a limited number of open-ended questions and four Likert scale questions. This study was also limited in that there was one main researcher who also delivered the two-day AA training. The sample data set was small which resulted in the limitation of the choice of methods used to analyse the quantitative data. Percentage changes were used as the only available and reliable method for a small data set.

Originality/value

Findings of this study, despite their preliminary nature, indicate that AA training may be a useful professional development consideration for OTs who provide a service for autistic children. Further AA research in OT is required including larger and more rigorous studies. An alternative training option of The Curiosity Programme may be considered for OTs supporting children who may not yet be ready to participate in AA.

Details

Irish Journal of Occupational Therapy, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 2398-8819

Keywords

Article
Publication date: 6 November 2023

Kamran Razmdoost and Leila Alinaghian

The adoption of social procurement, the emerging practice of using a firm's spending power to generate social value, requires buying firms to navigate conflicts of institutional…

Abstract

Purpose

The adoption of social procurement, the emerging practice of using a firm's spending power to generate social value, requires buying firms to navigate conflicts of institutional logics. Adopting an institutional work perspective, this study aims to investigate how buying firms change their existing procurement institutions to adopt and advance social procurement.

Design/methodology/approach

The authors conducted an in-depth case study of a social procurement initiative in the UK. This case study comprised of 16 buying firms that were actively participating in the social procurement initiative at the time of data collection (2020–2021). The data were largely captured through a set of 41 semi-structured interviews.

Findings

Four types of institutional work were observed: reducing institutional conflicts, crossing institutional boundaries, legitimising institutional change and spreading the new institutional logic. These different types of institutional work appeared in a sequential way.

Originality/value

This study contributes to various strands of literature investigating the role of procurement in generating value and benefits within societies, adopting an institutional lens to investigate the buying firms' purposeful actions to change procurement institutions. Secondly, this study complements the existing literature investigating the conflicts of institutional logics by illustrating the ways firms address such institutional conflicts when adopting and advancing social procurement. Finally, this work contributes to the recently emerging research on institutional work that examines the creation and establishment of new institutions by considering the existing procurement institutions in the examination of institutional work.

Details

International Journal of Operations & Production Management, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 0144-3577

Keywords

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