Advances in Autism – 9-3
1. Hudson NA, Linnane JM, Rayner-Smith K. Autism and social media: a systematic review of the user experience. Advances in Autism;2023;9(3):201-216.
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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2. Gupta N, Khanna M, Garg R, Sethi V, Khattar S, Tekkar P, Maria S, Gupta M, Saxena A, Gupta P, Ann Schuchert S. Exploration of caregiver experience for children with ASD: an in-depth perspective. Advances in Autism;2023;9(3):217-240.
Purpose This study aims to examine the psycho-emotional and social experiences of caregivers of children with autism spectrum disorder. Various facets of the caregiving experience are explored, including the feelings and thoughts of the parents/caregivers, such as the resilience experienced in their journey, how they coped with the challenges and also their positive experiences. Design/methodology/approach In this study, these aspects of the caregiving experience are broadly probed using semi-structured interviews subjected to narrative analysis. Lastly, there is a focus on the role of therapist-led intervention, specifically, the Eye to I© intervention model and its contributions to the parent/caregiver experience. Findings Findings from this study indicate that parents benefit from interventions that bridge gaps in skills and interpersonal communication which parents/caregivers feel they encounter in their day-to-day activities. Additionally, support groups for parents and caregivers could further address these issues. Originality/value This exploration reveals insights about the roles of societal structures and the caregiving journey.
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3. Hartley J, Purrington J, Hartley G. Remote autism assessments – lessons learned from the Covid-19 pandemic: a service evaluation. Advances in Autism;2023;9(3):241-252.
Purpose The COVID-19 pandemic has resulted in health services adapting the delivery of routine assessments, with many operating remotely. This paper aims to explore the lived experiences of individuals undertaking remote autism assessments during the COVID-19 pandemic. Design/methodology/approach A mixed-methods service evaluation was completed in an adult autism and neurodevelopmental service based in the north of England. A total of 24 participants, who had undergone remote autism assessments between March 2020 and July 2020, completed a questionnaire about their experiences. Thematic analysis was performed, and additional quantitative data were analysed descriptively to allow contextual information to be included. Findings The evaluation identified three main themes. The first, practical and sensory issues of remote assessment, indicated that internet connectivity problems were common and sometimes impeded a successful assessment. Additionally, participants identified some elements of the videocall impacted their sensory sensitivities. The second theme, emotional responses to remote assessment, demonstrated relief and exhaustion to be common following sessions. The ability to complete assessments from a safe space were favoured by most. The final theme, pros and cons of different assessment methods, highlighted the preference for video assessments above telephone and in person sessions. Originality/value This study provides an original contribution to the literature by gathering autistic adults’ perspectives on remote autism assessments. The findings suggest that video assessments were the most preferable, over face-to-face and then telephone. Services should offer video and face-to-face assessments while keeping telephone assessments to a minimum.
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4. Keates N, Beadle-Brown J. Improvisers’ experiences across neurotypes of participating in improv comedy. Advances in Autism;2023;9(3):253-265.
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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5. Cooke E, Brenner M, Smith V. The impact of COVID-19 on parents of autistic children with a particular focus on access to respite care. Advances in Autism;2023;9(3):266-278.
Purpose This study aims to explore how the COVID-19 pandemic has impacted parents of autistic children and their families in Ireland. Design/methodology/approach A qualitative thematic analysis methodology was applied using semi-structured interviews. A total of 12 parents (ten mothers, one father and one grandfather speaking on behalf of a mother) of autistic children were asked how the COVID-19 pandemic impacted them and their autistic child with a particular focus on how it has impacted their access to respite care. Interviews were completed remotely from July 2021 to October 2021. Findings Data analysis identified four themes that reflect an adverse pandemic impact. These were: world gone; alone and isolated; constantly fighting for help; and negative and positive impact of COVID-19 on child and family. Two parents reported positive outcomes of the pandemic such as social distance requirements. Five parents (42%) reported an increase in the amount of respite received. Three parents (25%) reported a decrease and four (33%) parents reported no change in their access to respite. Research limitations/implications COVID-19 has turned a spotlight on mental health for politicians, policymakers and the public and provides an opportunity to make mental health a higher public health priority for autistic children and their families. Originality/value This study highlights the need for access to respite for autistic children and for respite services to be responsive to the ongoing needs, in particular, the mental health needs of autistic children and their family, particularly in a crisis situation.
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6. Stagg S, Kodakkadan F, Rajan SK. Stress and resilience in British Indian parents with an autistic child: a comparative study with white British and Indian parents. Advances in Autism;2023;9(3):279-292.
Purpose This study aims to examine the levels of stress and resilience in a sample of British Indian parents bringing up a child with autism. Design/methodology/approach A total of 52 British Indian parents took part in a survey that included measures of stress, resilience, support and child adaptive functioning. Results were compared to a sample of white British (n = 120) and Indian parents (n = 120). Findings The British Indian parents recorded higher levels of stress and less perceived social support than their white British counterparts. British Indian parents took longer to register concern about their child’s development and sought a diagnosis at a later age than the white British group. The delay in concern and diagnosis was similar to that found in the India group. Originality/value The research suggests that British Indian parents are disadvantaged in social support and mental well-being compared to white British parents and may face similar community pressures to parents bringing up a child in India.
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7. Thompson LM, Wilkinson E, Nall-Evans S, Michelet F, Lewis MT, Pender F, Jaydeokar S. Can the “Current View” show that autistic young people referred to mental health services have more comorbidities and complex needs?. Advances in Autism;2023;9(3):293-305.
Purpose Autistic young people have health and care needs that may benefit from a multi-agency intervention. The “Current View” tool is routinely used in England to profile the needs of young people referred to mental health services. This study aims to examine associations between comorbidities and complex needs in autistic and non-autistic young people to assess the multifaceted needs of autistic young people. Design/methodology/approach A cohort study was conducted using data from the electronic patient record, comparing autistic and non-autistic young people to see which items in the four “Current View” tool categories were associated with autistic young people. Findings Issues associated with autistic young people were: “community issues”, “attainment issues” and “deemed child in need” (all p < 0.001). Autistic young people scored significantly more items (p < 0.05) in the categories complexity/contextual/educational factors. Comorbidities associated with autistic young people included anxiety, “behavioural difficulties”, “peer relationship difficulties” and “self-care issues” (all p < 0.001). There was an association with increased comorbidities and complexity factors in autistic young people which suggests increased support from agencies may be beneficial. Originality/value Few studies have used data in the “Current View” tool to assess young people referred to services. More use could be made of this data for planning and delivering services.
