Factors influencing the research participation of adults with autism spectrum disorders

The recruitment and retention of adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. To date, factors influencing the participation of adults for ASD research have been unexamined. This article draws on a study conducted in 2014 to identify factors influencing the participation of adults in longitudinal autism research. Quantitative and qualitative data was obtained from 167 participants across Australia in four categories: adults with either high-functioning autism or Asperger syndrome; adults with ASD and an intellectual disability; carers of these adults; and neuro-typical adults. This article includes results for adults with ASD and their carers. Factors influencing participation were found to differ both between and within participant categories. These factors were classified as those arising from a participant’s values, which acted as either a motivator or a deterrent; and those based on convenience, which acted as either an enabler or inhibitor. While helping others was a key motivator for all, participants also sought personal benefits, which differed between categories. Belonging to a research community of like-minded people was also a motivator and enabler. The inconvenience of time and travel required was a key inhibitor; insensitivity to an individual’s needs and preferences for engaging with the world a key deterrent; maximising choice in all aspects of participant involvement a vital enabler; and the use of financial and other extrinsic rewards was found to be problematic

Looking through the Same Eyes? Do Teachers' Participation Ratings Match with Ratings of Students with Autism Spectrum Conditions in Mainstream Schools?

To create an inclusive classroom and act accordingly, teachers’ understanding of the experiences of participation of students with autism spectrum conditions (ASCs) is crucial. This understanding may depend on the teachers’ professional experiences, support and personal interests. The aim of the present questionnaire study was to investigate how well the teachers’ ratings of their students with ASCs’ perception of participation matched with the students’ own ratings. Furthermore, possible correlations between the accuracy of teachers’ ratings and the teachers’ self-reported professional experience, support (including support-staff), and personal interest were investigated. Teachers’ ratings were also used to examine how their understandings correlated with classroom actions. The agreements between teachers’ and students’ ratings were moderate to high, and the ability to attune to the students’ perception of participation was not affected by the presence of a support-staff. The teachers’ personal interest in teaching students with ASC correlated with their accuracy, suggesting that this is a factor to consider when planning for successful placements in mainstream schools. Teachers’ understandings of the students with ASCs’ perception of being bullied or unpopular correlated with implementation of activities to improve the attitudes of classmates, but not with actions to enhance social relations for the students with ASC

Employers' perception of the costs and the benefits of hiring individuals with autism spectrum disorder in open employment in Australia

Research has examined the benefits and costs of employing adults with autism spectrum disorder (ASD) from the perspective of the employee, taxpayer and society, but few studies have considered the employer perspective. This study examines the benefits and costs of employing adults with ASD, from the perspective of employers. Fifty-nine employers employing adults with ASD in open employment were asked to complete an online survey comparing employees with and without ASD on the basis of job similarity. The findings suggest that employing an adult with ASD provides benefits to employers and their organisations without incurring additional costs

Working sandwich generation women utilize strategies within and between roles to achieve role balance

Increasingly, women simultaneously balance the roles of mother, parental carer and worker. However, individual role balance strategies among these working \u27sandwich\u27 generation women have not been thoroughly explored. Eighteen women combining these three roles were interviewed about their individual role balance strategies. Findings were identified through the framework analysis technique, underpinned by the Model of Juggling Occupations. Achieving and maintaining role balance was explained as a complex process accomplished through a range of strategies. Findings revealed the women used six within-role balance strategies: living with integrity, being the best you can, doing what you love, loving what you do, remembering why and searching for signs of success. The women also described six between-role balance strategies: maintaining health and wellbeing, repressing perfectionism, managing time and energy, releasing responsibility, nurturing social connection and reciprocating. These findings provide a basis for health care providers to understand and potentially support working \u27sandwich\u27 generation women. © 2016 Evans et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited

Visual search strategies during facial recognition in children with ASD

Facial recognition is a complex skill necessary for successful human interpersonal and social interactions. Given that the most prevalent disorder of social interaction is autism spectrum disorder (ASD), a number of studies have investigated and found impaired facial recognition abilities in people with ASD. Further, this impairment may be critically involved in mediating the deficits in interpersonal and social interactions in people with ASD. We sought to address the question of whether face processing is impaired in children with ASD in the current study. While there were a number of differences in visual search behaviours between the 19 children with ASD and the 15 controls, this did not manifest in deficits in facial recognition accuracy. In addition, there were notable differences with respect to eye fixation behaviours and recognition accuracy in this study compared to the findings in a previous similar study conducted in adults with ASD. These differences suggest a performance enhancing developmental trajectory in facial processing in controls that may not be present in individuals with ASD

Viewpoints of Adults with and without Autism Spectrum Disorders on Public Transport

Background: Public transport is low cost, allows for independence, and facilitates engagement and participation for non-drivers. However, the viewpoints of individuals with cognitive disabilities are rarely considered. In Australia, the prevalence of Autism Spectrum Disorders (ASD) is approximately 1% and increasing. Many individuals with ASD do not possess a driver’s licence, indicating that access to public transport is crucial for their independence. However, at present, there is no research on the opinions of adults with ASD on public transport. Aim: To identify the viewpoints of adults with ASD regarding the barriers and facilitators of public transport usage and their transportation preferences, and to contrast these against the viewpoints of neurotypical adults. Methods: Q method was used to identify the viewpoints of both participant groups on public transport. Participants consisted of 55 adults with a diagnosis of ASD and a contrast group of 57 neurotypical adults. Both groups completed a Q sort task which took place in either Perth or Melbourne, Australia.Results: The most prominent viewpoint indicated that both groups preferred to use public transport over driving and believed that it supported their independence. This viewpoint also indicated that both groups preferred to use electronic ticketing when using public transport. Interestingly, the second most prominent viewpoint indicated that both groups preferred to drive themselves by private car rather than use public transport. Discussion: It appears that the viewpoints of adults with and without ASD regarding public transportation were largely similar. However, questions arose about whether the preference for public transport in the ASD group may be more a result of difficulties obtaining a driving licence than a deliberate choice. The only barrier specified by adults with ASD related to crowding on public transport. Safety and convenience in relation to location and timing of services were barriers reported by neurotypical adults

An exploration of the experience of parents with children with autism spectrum disorder after diagnosis and intervention

Delays and difficulties in both diagnosis and access to services can compound existing stressors experienced by families with children with autism spectrum disorder Early and accurate diagnosis and appropriate intervention may not only improve child-specific outcomes but may also mitigate some of the stressors impacting family relationships and quality of life. We aimed to understand the experience of over 500 families that had sought autism spectrum disorder diagnosis and intervention, their perceptions of the efficacy of these services, and the impact that this process had on their family life. Parents overwhelmingly described frustration with access to a timely diagnosis, specialized intervention services, and funding that impacted their family life and relationships. However, parents simultaneously reported positive perceptions of change as a consequence of diagnosis and effective intervention.Funding Agencies|Department of Social Services (DSS) in Western Australia; Australian Governments Cooperative Research Centres ProgrammeAustralian GovernmentDepartment of Industry, Innovation and ScienceCooperative Research Centres (CRC) Programme</p

The Cost of Autism Spectrum Disorders

Objective: A diagnosis of an autism spectrum disorders is usually associated with substantial lifetime costs to an individual, their family and the community. However, there remains an elusive factor in any cost-benefit analysis of ASD diagnosis, namely the cost of not obtaining a diagnosis. Given the infeasibility of estimating the costs of a population that, by its nature, is inaccessible, the current study compares expenses between families whose children received a formal ASD diagnosis immediately upon suspecting developmental atypicality and seeking advice, with families that experienced a delay between first suspicion and formal diagnosis. Design: A register based questionnaire study covering all families with a child with ASD in Western Australia. Participants: Families with one or more children diagnosed with an ASD, totalling 521 children diagnosed with an ASD; 317 records were able to be included in the final analysis.Results: The median family cost of ASD was estimated to be AUD $34,900 per annum with almost 90$29,200) due to loss of income from employment. For each additional symptom reported, approximately $1,400 cost for the family per annum was added. While there was little direct influence on costs associated with a delay in the diagnosis, the delay was associated with a modest increase in the number of ASD symptoms, indirectly impacting the cost of ASD. Conclusions: A delay in diagnosis was associated with an indirect increased financial burden to families. Early and appropriate access to early intervention is known to improve a child's long-term outcomes and reduce lifetime costs to the individual, family and society. Consequently, a per symptom dollar value may assist in allocation of individualised funding amounts for interventions rather than a nominal amount allocated to all children below a certain age, regardless of symptom presentation, as is the case in Western Australia

Face recognition and visual search strategies in autism spectrum disorders: Amending and extending a recent review by Weigelt et al.

The purpose of this review was to build upon a recent review by Weigelt et al. which examined visual search strategies and face identification between individuals with autism spectrum disorders (ASD) and typically developing peers. Seven databases, CINAHL Plus, EMBASE, ERIC, Medline, Proquest, PsychInfo and PubMed were used to locate published scientific studies matching our inclusion criteria. A total of 28 articles not included in Weigelt et al. met criteria for inclusion into this systematic review. Of these 28 studies, 16 were available and met criteria at the time of the previous review, but were mistakenly excluded; and twelve were recently published. Weigelt et al. found quantitative, but not qualitative, differences in face identification in individuals with ASD. In contrast, the current systematic review found both qualitative and quantitative differences in face identification between individuals with and without ASD. There is a large inconsistency in findings across the eye tracking and neurobiological studies reviewed. Recommendations for future research in face recognition in ASD were discussed

Viewpoints on Factors for Successful Employment for Adults with Autism Spectrum Disorder

This article explores the key factors for successful employment from the viewpoints of adults with autism spectrum disorder (ASD) and employers. Two groups of individuals participated in this study, 40 adults with ASD and 35 employers. Q method was used to understand and contrast the viewpoints of the two groups. Data were analysed using by-person varimax rotation factor analysis. Results showed that although both groups appear committed to the employment process, the difference in their understanding regarding the type of workplace support required, job expectations and productivity requirements continues to hinder successful employment. These results highlight the need to facilitate communication between employees and employers to ensure a clear understanding of the needs of both groups are met. The use of an ASD-specific workplace tool may assist in facilitating the necessary communication between these two groups