Advances in Autism : 2020 - Issue 1

samedi 22 février 2020

1. Chaplin E, McCarthy J. Editorial. Advances in Autism ;2019 ;6(1):1-2.

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2. Kupferstein H. Why caregivers discontinue applied behavior analysis (ABA) and choose communication-based autism interventions. Advances in Autism ;2019 ;6(1):72-80.

Purpose The purpose of this paper is to explore why autistic people and their caregivers choose interventions other than applied behavior analysis (ABA), and how their decision impacts them over their lifespan. The focus group was divided into those who pursued augmentative and alternative communication (AAC)-based supports, received ABA, selected other interventions or received no intervention at all. The reported posttraumatic stress symptoms (PTSS) of ABA recipients were compared to non-ABA recipients in order to evaluate the long-term impacts of all intervention types. Using a mixed-method thematic analysis, optional comments submitted alongside a quantitative online survey were reviewed for emergent themes. These comments augmented the survey Likert scores with a qualitative impression of the diverse intervention-related attitudes among participants. Investigating the lived experiences of autism intervention recipients illuminated the scope of the long-term impacts of each intervention that was chosen. Overall, autistics who received no intervention fared best, based on the lowest reported PTSS. These findings may inform the potential redesign of autism interventions based on the firsthand reported experiences and opinions of autistics.Design/methodology/approach The aim of this study was to conduct research that is both question-driven and data-driven to aid in the analysis of existing data (Van Helden, 2013). In the research question-driven approach, the independent variables were the intervention type and duration of exposure relative to lifespan ; the dependent variables were the PTSS severity score and binary indicator of meeting PTSS criteria. The analyses that were conducted included linear regression analyses of severity score on intervention type and duration, and χ2 tests for independence of the probabilities of PTSS criterion satisfaction and intervention type. This experiment was designed to test the data-driven hypothesis that the prevalence and severity of PTSS are dependent on the type of autism intervention and duration of exposure. After reviewing the primary data set, the data-driven inquiry determined that the sample for secondary analysis should be categorized by communication-based vs non-communication-based intervention type in order to best complement the limitations and strengths of the published findings from the primary analysis.Findings Autistics who received no intervention had a 59 percent lower likelihood of meeting the PTSS criteria when compared to their ABA peers, and they remained 99.6 percent stable in their reported symptoms throughout their lifespan (R2=0.004). ABA recipients were 1.74 times more likely to meet the PTSS criteria when compared to their AAC peers. Within the 23 percent who selected an intervention other than ABA, consisting of psychotherapy, mental health, son-rise and other varying interventions, 63 percent were asymptomatic. This suggests that the combined benefits of communication-based interventions over behaviorism-influenced ABA practices may contribute to enhanced quality of life. Although not generalizable beyond the scope of this study, it is indicated from the data that autistics who received no intervention at all fared best over their lifetimes.Research limitations/implications The obvious advantage of a secondary analysis is to uncover key findings that may have been overlooked in the preliminary study. Omitted variables in the preliminary data leave the researcher naive to crucially significant findings, which may be mitigated by subsequent testing in follow-up studies (Cheng and Phillips, 2014, p. 374). Frequency tables and cross-tabulations of all variables included in the primary analysis were reproduced. The secondary analysis of existing data was conducted from the design variables used in the original study and applied in the secondary analyses to generate less biased estimates (Lohr, 2010 ; Graubard and Korn, 1996). Inclusion criteria for each intervention group, PTSS scores and exposure duration, were inherited from the primary analysis, o allow for strategic judgment about the coding of the core variables pertaining to AAC and PTSS. The data sample from 460 respondents was reduced to a non-ABA group of n=330. An external statistician scored each respondent, and interrater reliability was assessed using Cohen’s κ coefficient (κ=1).Practical implications Including the autistic voice in the long-term planning of childhood interventions is essential to those attempting to meet the needs of the individuals, their families and communities. Both parents and autistic participant quotes were obtained directly from the optional comments to reveal why parents quit or persisted with an autism intervention.Social implications Practitioners and intervention service providers must consider this feedback from those who are directly impacted by the intervention style, frequency or intensity. The need for such work is confirmed in the recent literature as well, such as community-based participatory research (Raymaker, 2016). Autistics should be recognized as experts in their own experience (Milton, 2014). Community–academic partnerships are necessary to investigate the needs of the autistic population (Meza et al., 2016).Originality/value Most autistic people do not consider autism to be a mental illness nor a behavior disorder. It is imperative to recognize that when injurious behavior persists, and disturbance in mood, cognition, sleep pattern and focus are exacerbated, the symptoms are unrelated to autism and closely align to the diagnostic criteria for posttraumatic stress disorder (PTSD). When PTSD is underdiagnosed and untreated, the autistic individual may experience hyperarousal and become triggered by otherwise agreeable stimuli. Since autism interventions are typically structured around high contact, prolonged hours and 1:1 engagement, the nature of the intervention must be re-evaluated as a potentially traumatic event for an autistic person in the hyperarousal state. Any interventions which trigger more than it helps should be avoided and discontinued when PTSS emerge.

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3. Lim Jan M. Emotion regulation and intervention in adults with autism spectrum disorder : a synthesis of the literature. Advances in Autism ;2019 ;6(1):48-62.

Purpose Emotion regulation is an ongoing multiprocess phenomenon and is a challenging developmental task to acquire in individuals with autism spectrum disorder (ASD) who have different neurobiological profiles and emotion regulation problems. The purpose of this paper is to review recent literature to understand the neurobiological and psychological perspective of emotion regulation in ASD, while converging themes of psychosocial interventions and existing best practices on emotion regulation within this heterogeneous population are reviewed and discussed in consideration of intellectual disability (ID).Design/methodology/approach Review of recent literature and common empirically supported interventions addressing emotional regulation implemented in individuals with and without ASD, and with and without ID were included in the electronic database search through PubMed, EBSChost, Science Direct, Wiley Online Library, GALE and SAGE. Search terms used included autism, ID, cognitive control, executive function, sensory processing/intervention, emotion regulation, cognitive behavior therapy, mindfulness, social stories, positive behavior support and behavior therapy.Findings Neural systems governing emotion regulation can be divided into “top-down” and “bottom-up” processing. Prefrontal cortex, cognitive and attentional control are critical for effective emotion regulation. Individuals with ASD, and with ID show impairments in these areas have problems with emotion regulation. Targeted psychosocial intervention need to consider bottom-up and top-down processes of emotion regulation, and that standardized interventions require adaptations.Originality/value There are limited studies looking into understanding the neurobiological and psychological perspective of emotion regulation in ASD and linking them to interventions. This review highlights psychosocial interventions that are important for further research, investigation and development as treatment in this population is limited.

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4. Murphy D, Allely C. Autism spectrum disorders in high secure psychiatric care : a review of literature, future research and clinical directions. Advances in Autism ;2019 ;6(1):17-34.

Purpose The purpose of this paper is to review available literature targeting the assessment and management of individuals with an autism spectrum disorder (ASD) admitted to high secure psychiatric care (HSPC). Key areas of examination include the prevalence of ASD in HSPC, how individuals with an ASD differ from other patient groups in clinical and cognitive characteristics, the views of staff regarding patients with an ASD, an exploration of the experiences and quality of life of patients with an ASD, as well as treatment and interventions.Design/methodology/approach A review of the published literature.Findings Although individuals with an ASD comprise a relatively small proportion of the total HSPC cohort, they appear to be over represented relative to the general population prevalence. Several research projects suggest that individuals with an ASD present with difficulties and needs different to other patient groups, as well as being viewed by staff as potentially vulnerable and requiring a different care approach. Individuals with an ASD report both positive and negative aspects to life in HSPC.Practical implications Suggestions are made with regard to how individuals with an ASD might be better managed in HSPC. Following the spirit of various pieces of government legislation such as the Autism Act (2009) and the Equalities Act (2010) the role of a specialist ASD HSPC service is proposed.Originality/value This paper provides a detailed review of the research to date exploring the assessment and management of individuals with an ASD detained in HSPC. It outlines key research findings, highlights limitations with it and provides a personal perspective on future research and clinical targets.

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5. Murphy D, Broyd Josephine G. Evaluation of autism awareness training provided to staff working in a high secure psychiatric care hospital. Advances in Autism ;2019 ;6(1):35-47.

Purpose The purpose of this paper is to evaluate autism awareness training provided to staff working in a high secure psychiatric care (HSPC) hospital.Design/methodology/approach An online survey of staff views who had completed an autism awareness training day.Findings All staff who completed the evaluation questionnaire reported that an autism awareness training day had been useful and had increased their knowledge of how to work with individuals who have autism. However, most staff also reported that one day was not long enough and that more case discussion would have been helpful. Although most staff also reported that autism awareness training should be mandatory, motivation to attend such training was considered important. In terms of the number of staff who had completed the training, whilst a wide range of staff groups had attended training, only a minority had done so, with the number of staff completing the training each year remaining relatively constant over a five-year period.Research limitations/implications Within the context of promoting Enabling Environments in forensic settings and the recent government consultation paper exploring whether autism awareness training should be mandatory for all those working in health care, further investigation is required into how to increase staff motivation to attend autism awareness training and to explore how it is used during everyday work with patients.Originality/value As an initial evaluation of optional autism awareness training delivered in HSPC, the project offers some valuable information in terms of the number of staff who attend such training, what they find useful and how it might be improved for this setting.

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6. Ogawa S, Kojima M. Contingencies of self-worth in adolescents with ASD and their correlation with subjective adjustment to school. Advances in Autism ;2019 ;6(1):63-71.

Purpose The purpose of this paper is twofold : first, to validate the Contingencies of Self-Worth Scale (CSWS) for adolescents with autism spectrum disorder (ASD) and typically developing individuals and, second, examine the association between contingencies of self-worth and subjective adjustment to school.Design/methodology/approach A self-report was used to examine both contingencies of self-worth and subjective adjustment to school in adolescents with ASD and typically developing individuals.Findings First, the validity and reliability of the CSWS was verified. Second, the scale was not significant correlation with subjective adjustment to school and contingencies of self-worth in adolescents with ASD. As the reason for this, it has been suggested that there are adaptive aspects and maladaptive aspects in contingencies of self-worth.Originality/value This is an original research designed to examine contingencies of self-worth in adolescents with ASD.

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7. Politis Y, Sung C, Goodman L, Leahy M. Conversation skills training for people with autism through virtual reality : using responsible research and innovation approach. Advances in Autism ;2019 ;6(1):3-16.

Purpose Users’ role in co-designing products has changed : from influencing outcomes to influencing development/design ; from standardizing to customising products/outcomes ; from participating to engaging designers/developers. Although this participatory design (PD) approach makes users’ role more prominent it has been under-utilised for the technological development of products for people with neurodevelopmental disabilities (NDD). The purpose of this paper is to present a responsible research and innovation example, in conversation skills training for people with autism, using virtual reality (VR).Design/methodology/approach The PD approach was adopted during the iterative development of the virtual world and training materials. Multiple baseline design was utilised consisting of three participants on the mild/moderate end of the autism spectrum. Participants joined 15–16 sessions over four phases of structured conversations, delivered both face-to-face and virtually.Findings The feedback sessions revealed that the participants felt VR has the potential in providing training for people with autism spectrum disorders. Moreover, they thought delivering the training in three formats could enhance their learning, since PowerPoints, videos and chatbot would represent teaching, showing and practicing, respectively.Social implications PD promotes a “one-size-fits-one approach”, cultivating agile, inclusive, responsive design approaches for people with NDDs, so that outcome meets their needs and preferences, while VR training allows for a wider implementation, benefiting a wider range of learners.Originality/value The RRI approach increases the inclusion of people with disabilities in the decision-making process through dialogue with “experts”, making their role more visible, fostering an ethical and sustainable innovation process, leading to more desirable outcomes.

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