Research priorities of the autism community: A systematic review of key stakeholder perspectives

Autism ◽  
2020 ◽  
pp. 136236132096779
Author(s):  
Laura Roche ◽  
Dawn Adams ◽  
Megan Clark
Keyword(s):  
Systematic Review ◽  
Real World ◽  
Skill Training ◽  
Research Priorities ◽  
Autism Spectrum ◽  
Future Research ◽  
Daily Lives ◽  
Autism Research ◽  
Stakeholder Perspectives ◽  
Key Stakeholders

In recent years, a shift in focus has seen researchers seek to identify the priorities and preferences of key stakeholders to shape the direction of future research for those on the autism spectrum. The process of synthesising the views, knowledge and expertise of key stakeholders with either a lived or shared experience of autism is invaluable and can inform future research to ensure that it is meaningful and has the greatest impact. A number of studies have reported on the research priorities of groups within the autism community, but to date, these studies stand alone and priorities have not been considered collectively. This systematic review identified seven studies that reported on key stakeholders’ priorities for autism research. Studies were synthesised according to (a) the target participant group and method of recruitment, (b) the methodology used to elucidate the viewpoint of stakeholders, (c) the country of stakeholders and (d) commonly identified priorities. Common features across studies note the importance of prioritising initiatives that will result in real-world changes in the lives of the autism community and more research across the lifespan. There is an identified need for more diverse stakeholder voices to influence the identification of priorities for future research foci. Continued inclusion of the autistic and autism communities in priority-setting research is imperative for achieving significant outcomes in autism research and to progress the field in an effective and socio-ethical way. Lay abstract It has become very important in autism research to ask the autistic community about what kinds of research they think should be done in order to improve the lives of people with autism. Many studies have reported on research goals from people within the autism community, such as parents of people on the autism spectrum, and practitioners and clinicians who support people on the autism spectrum. So far, the research goals from all of these studies have not been considered together, which is important so that all autism research can be working towards the same goals. We reviewed seven studies that looked at the priorities for autism research from key people within the autism community. Each of the reviewed studies are described according to (a) the types of people involved in the study, (b) the way the research goals from each group of people were identified, (c) the country where they were from and (d) the most common research goals from across all of the studies. Within these seven studies, research that will lead to real-world changes in the daily lives of the autism community and a greater focus on skill training for people with autism across their lives were found to be very important. From this review, we found that it is also very important to include a range of different people from the autism community when deciding what autism research goals should be focused on so that future research can be more helpful for the autism community.

scholarly journals Computer vision in autism spectrum disorder research: a systematic review of published studies from 2009 to 2019

2020 ◽  
Vol 10 (1) ◽  
Author(s):  
Ryan Anthony J. de Belen ◽  
Tomasz Bednarz ◽  
Arcot Sowmya ◽  
Dennis Del Favero
Keyword(s):  
Systematic Review ◽  
Autism Spectrum Disorder ◽  
Computer Vision ◽  
Affective Computing ◽  
Autism Spectrum ◽  
Primary Objective ◽  
Spectrum Disorder ◽  
Future Research ◽  
Strong Impact ◽  
Autism Research

Abstract The current state of computer vision methods applied to autism spectrum disorder (ASD) research has not been well established. Increasing evidence suggests that computer vision techniques have a strong impact on autism research. The primary objective of this systematic review is to examine how computer vision analysis has been useful in ASD diagnosis, therapy and autism research in general. A systematic review of publications indexed on PubMed, IEEE Xplore and ACM Digital Library was conducted from 2009 to 2019. Search terms included [‘autis*’ AND (‘computer vision’ OR ‘behavio* imaging’ OR ‘behavio* analysis’ OR ‘affective computing’)]. Results are reported according to PRISMA statement. A total of 94 studies are included in the analysis. Eligible papers are categorised based on the potential biological/behavioural markers quantified in each study. Then, different computer vision approaches that were employed in the included papers are described. Different publicly available datasets are also reviewed in order to rapidly familiarise researchers with datasets applicable to their field and to accelerate both new behavioural and technological work on autism research. Finally, future research directions are outlined. The findings in this review suggest that computer vision analysis is useful for the quantification of behavioural/biological markers which can further lead to a more objective analysis in autism research.

Gamification Research

2020 ◽  
pp. 397-412
Author(s):  
Kingsley Ofosu-Ampong ◽  
Thomas Anning-Dorson
Keyword(s):  
Systematic Review ◽  
Information Technology ◽  
Developing Countries ◽  
Real World ◽  
Game Design ◽  
Future Research ◽  
Agriculture Education ◽  
Design Elements ◽  
Scopus Database ◽  
Education Business

Despite advances in information technology, studies suggest that there is little knowledge of how developing countries are applying gamification in agriculture, education, business, health, and other domains. Thus, from a systematic review, this chapter examines the extent of gamification research in the developing country context. In this chapter, 56 articles were reviewed, and the search was done in the Scopus database. This chapter explains the idea of game design elements in information systems and provides real-world examples of gamified systems outcomes from developing countries. The authors conclude with directions for future research to extend our knowledge of gamification and advance the existing methodologies, domains, and theories.

scholarly journals A Systematic Review of Normative Studies Using Images of Common Objects

2020 ◽  
Vol 11 ◽  
Author(s):  
Cristiane Souza ◽  
Margarida V. Garrido ◽  
Joana C. Carmo
Keyword(s):  
Systematic Review ◽  
Cultural Context ◽  
Visual Complexity ◽  
Open Science ◽  
Future Research ◽  
Daily Lives ◽  
Science Practices ◽  
Living Things ◽  
Culturally Based

Common objects comprise living and non-living things people interact with in their daily-lives. Images depicting common objects are extensively used in different fields of research and intervention, such as linguistics, psychology, and education. Nevertheless, their adequate use requires the consideration of several factors (e.g., item-differences, cultural-context and confounding correlated variables), and careful validation procedures. The current study presents a systematic review of the available published norms for images of common objects. A systematic search using PRISMA guidelines indicated that despite their extensive use, the production of norms for such stimuli with adult populations is quite limited (N = 55), particularly for more ecological images, such as photos (N = 14). Among the several dimensions in which the items were assessed, the most commonly referred in our sample were familiarity, visual complexity and name agreement, illustrating some consistency across the reported dimensions while also indicating the limited examination of other potentially relevant dimensions for image processing. The lack of normative studies simultaneously examining affective, perceptive and semantic dimensions was also documented. The number of such normative studies has been increasing in the last years and published in relevant peer-reviewed journals. Moreover, their datasets and norms have been complying with current open science practices. Nevertheless, they are still scarcely cited and replicated in different linguistic and cultural contexts. The current study brings important theoretical contributions by characterizing images of common objects stimuli and their culturally-based norms while highlighting several important features that are likely to be relevant for future stimuli selection and evaluative procedures. The systematic scrutiny of these normative studies is likely to stimulate the production of new, robust and contextually-relevant normative datasets and to provide tools for enhancing the quality of future research and intervention.

scholarly journals Requirements for Robotic Interpretation of Social Signals “in the Wild”: Insights from Diagnostic Criteria of Autism Spectrum Disorder

Information ◽  
2020 ◽  
Vol 11 (2) ◽  
pp. 81 ◽  
Author(s):  
Madeleine E. Bartlett ◽  
Cristina Costescu ◽  
Paul Baxter ◽  
Serge Thill
Keyword(s):  
Autism Spectrum Disorder ◽  
Real World ◽  
Technological Progress ◽  
State Of The Art ◽  
Autism Spectrum ◽  
Social Robotics ◽  
Human Behaviour ◽  
Spectrum Disorder ◽  
Future Research ◽  
Technological Means

The last few decades have seen widespread advances in technological means to characterise observable aspects of human behaviour such as gaze or posture. Among others, these developments have also led to significant advances in social robotics. At the same time, however, social robots are still largely evaluated in idealised or laboratory conditions, and it remains unclear whether the technological progress is sufficient to let such robots move “into the wild”. In this paper, we characterise the problems that a social robot in the real world may face, and review the technological state of the art in terms of addressing these. We do this by considering what it would entail to automate the diagnosis of Autism Spectrum Disorder (ASD). Just as for social robotics, ASD diagnosis fundamentally requires the ability to characterise human behaviour from observable aspects. However, therapists provide clear criteria regarding what to look for. As such, ASD diagnosis is a situation that is both relevant to real-world social robotics and comes with clear metrics. Overall, we demonstrate that even with relatively clear therapist-provided criteria and current technological progress, the need to interpret covert behaviour cannot yet be fully addressed. Our discussions have clear implications for ASD diagnosis, but also for social robotics more generally. For ASD diagnosis, we provide a classification of criteria based on whether or not they depend on covert information and highlight present-day possibilities for supporting therapists in diagnosis through technological means. For social robotics, we highlight the fundamental role of covert behaviour, show that the current state-of-the-art is unable to characterise this, and emphasise that future research should tackle this explicitly in realistic settings.

A Systematic Review of the Autism Research With Children Who Are Deaf or Hard of Hearing

2017 ◽  
Vol 39 (2) ◽  
pp. 330-334 ◽  
Author(s):  
Sarah Hansen ◽  
Jessica Scott
Keyword(s):  
Systematic Review ◽  
Hard Of Hearing ◽  
Challenging Behavior ◽  
Autism Spectrum ◽  
Evidence Based ◽  
Dually Diagnosed ◽  
Evidence Based Practices ◽  
Autism Research ◽  
Research With Children ◽  
Development Assessment

The current study is a systematic review on the available evidence on language development, assessment, challenging behavior, and instruction for children dually diagnosed with autism spectrum disorder and deafness. Results indicate a strong need for additional research in these areas, especially in the areas of evidence-based practices.

The challenge of training supervisors to use direct assessments of clinical competence in CBT consistently: a systematic review and exploratory training study

2016 ◽  
Vol 9 ◽  
Author(s):  
Maria E. Loades ◽  
Peter Armstrong
Keyword(s):  
Systematic Review ◽  
Clinical Competence ◽  
Exploratory Study ◽  
Research Priorities ◽  
Future Research ◽  
Rater Training ◽  
Supervisor Training ◽  
Rater Reliability ◽  
Exploratory Data ◽  
And Training

AbstractEvaluating and enhancing supervisee competence is a key function of supervision and can be aided by the use of direct assessments of clinical competence, e.g. the Cognitive Therapy Scale – Revised (CTS-R). We aimed to review the literature regarding inter-rater reliability and training on the CTS and CTS-R to present exploratory data on training raters to use this measure. We employed a systematic review. An exploratory study evaluated the outcomes of a CTS-R supervisor training workshop (n = 34), including self-reported familiarity with and confidence in using the tool, and inter-rater consistency on three CTS-R subscales, pre- and post-training. CTS and CTS-R inter-rater reliability was variable, with evidence of rater training enhancing reliability, although the form, duration and frequency of such training is unclear. The exploratory study found that supervisors rated themselves as more familiar with and confident in using the CTS-R at the end of training compared to at the beginning. However, inter-rater reliability was poor at the beginning and end of the training. Rating competence requires supervisors to make qualitative judgements, which is inherently variable. Training raters has been shown to improve rater reliability, although this was not demonstrated in the exploratory study. Practice implications and future research priorities are identified.

scholarly journals Should we expect bilingualism to confer cognitive benefits in children with Autism Spectrum Disorders?

2020 ◽  
Author(s):  
Rachael Davis ◽  
Lewis Montgomery ◽  
Hugh Rabagliati ◽  
Antonella Sorace ◽  
Sue Fletcher-Watson
Keyword(s):  
Research Priorities ◽  
Evidence Base ◽  
Autism Spectrum ◽  
Future Research ◽  
High Quality Research ◽  
Research Directions ◽  
Cognitive Benefits ◽  
Future Research Directions ◽  
The Impact

This article examines the ways in which bilingualism influences social and cognitive development and identifies intersections between corresponding aspects of autism, to inform future research directions. Three key domains are identified: social cognition; executive functions; and social-cultural factors. In each case we describe the evidence for the impact of bilingualism in typical development and map this onto what is known about the domain in autism. We examine the methodological quality of the existing literature to make recommendations for future approaches. Results suggest a dearth of high-quality research and lack of consensus. Research priorities include the need for innovative designs to explore potential impacts of bilingualism in order to increase the validity of the evidence base for caregivers and professionals.

Measuring impulsivity in daily life: A systematic review and recommendations for future research

2020 ◽  
Author(s):  
Sarah A Griffin ◽  
Lindsey K Freeman ◽  
Timothy J Trull
Keyword(s):  
Systematic Review ◽  
Mobile Technology ◽  
Daily Life ◽  
Reliability And Validity ◽  
Future Research ◽  
Review Of The Literature ◽  
Cross Sectional ◽  
Daily Lives ◽  
Psychological Phenomena ◽  
Impulsive Processes

Impulsivity is a multi-dimensional construct that has shown utility in relation to important occupational, functional, and clinical outcomes (e.g. substance use, social functioning, aggression) in cross-sectional studies. However, trait and cross-sectional assessments of impulsivity have shown less utility in prospectively predicting specific instances of these outcomes. The recent proliferation of mobile technology has allowed for investigation into psychological phenomena in participants’ daily lives, clarifying many momentary and prospective relationships. Studying impulsivity using daily life methods offers promise in understanding impulsive processes and proximal influences on behavior. We conducted a systematic review of the literature to identify studies assessing impulsivity in daily life to characterize the conceptualization, measurement, and validity of momentary impulsivity. The studies reviewed highlight the reliability and validity of the construct of momentary impulsivity and identify areas for improvement in measurement and statistical practices. We make suggestions for future research based on the evidence presented.

A Systematic Review of Effects of Social Stories Interventions for Individuals With Autism Spectrum Disorder

2015 ◽  
Vol 33 (1) ◽  
pp. 25-34 ◽  
Author(s):  
Cathy H. Qi ◽  
Erin E. Barton ◽  
Margo Collier ◽  
Yi-Ling Lin ◽  
Charisse Montoya
Keyword(s):  
Systematic Review ◽  
Autism Spectrum Disorder ◽  
Visual Analysis ◽  
Causal Relation ◽  
Single Case ◽  
Social Stories ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Future Research ◽  
Design Standards

The purpose of this systematic review was to synthesize 22 single-case research design (SCRD) studies on social stories intervention for individuals with autism spectrum disorder (ASD). We used the What Works Clearinghouse (WWC) SCRD standards to analyze study rigor and evidence of a causal relation. We calculated four nonoverlap indices to evaluate intervention, maintenance, and generalization effects. Results suggested that all studies met the WWC design standards with or without reservations. Seven studies (32%) provided strong or moderate evidence of a causal relation. Nonoverlap indices calculations indicated social stories intervention was effective. Using the WWC 5-3-20 guidelines to determine evidence of social stories, social stories intervention would not be considered an evidence-based practice (EBP) for individuals with ASD based on visual analysis, but would be deemed an EBP based on nonoverlap indices. It is worth noting that WWC used visual analysis, not nonoveralap indices, to determine whether an intervention meets the 5-3-20 replication rule. Findings of the systematic review showed there were discrepancies. Implications for future research and practice are discussed.

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