Exploration of caregiver experiences of reported first signs of autism.

AIM: This study explored caregiver-reported first signs of autism and caregiver experiences of reporting these signs to health professionals using a multiple methods approach. BACKGROUND: Within the Australian context, children who have been diagnosed with autism represent a significant proportion of individuals requiring access to disability services. Due to the importance of accessing early intervention services to support future outcomes, it is vital that first signs are noticed, reported, and the diagnosis process begun as soon as possible. METHOD: Phase 1 of the study included a secondary analysis of a survey of caregivers, while phase 2 consisted of focus groups of caregivers of children on the autism spectrum. RESULTS: Survey data indicated that most children were aged 12-18 months when first signs were noticed, with first signs noticed earlier in females than males. Children were age 2-6 years when caregivers sought advice and received a diagnosis. Uncertainty and a lack of information often left caregivers feeling frustrated and under-supported when seeking advice and diagnosis. Despite first signs being recognised early by caregivers, barriers to information and seeking help and support resulted in significant delays in receiving a diagnosis. CONCLUSIONS: The study provides valuable consideration of the caregiver perspective regarding reported first signs of autism and the additional challenges faced by caregivers living in regional and rural areas. By being more informed of what caregivers first notice, health professionals may also be able to provide better support and advice to caregivers in regard to access to diagnosis and early intervention services.

KONTAKT® social skills group training for Australian adolescents with autism spectrum disorder: a randomized controlled trial.

While there is a large body of evidence drawn from randomised controlled trials supporting the efficacy of SSGT in autistic adolescents, the control arms of these studies are almost exclusively treated either as usual or waitlist. Addressing this limitation, 90 verbal autistic adolescents (70% male) aged 12-17 years (M = 13.77, SD = 1.6) with IQ > 70 participated in this pragmatic two-armed randomised controlled trial design study evaluating the efficacy of sixteen 90-min sessions of SSGT KONTAKT® (n = 46) in comparison to a manualised interactive group cooking programme (n = 44) of equal dosage controlling for the potentially confounding effects of exposure to a social group context. The primary outcome was the adolescents' progress towards achieving their personally meaningful social goals at follow-up. Secondary outcomes were changes in autistic traits, quality of life, facial emotion recognition skills, social anxiety, and loneliness. Assessments were conducted at baseline, post intervention and 12-week follow-up. The interaction between time point and group allocation was investigated through a random-effects regression model (linear mixed model) to examine changes in the dependent outcomes. While intention-to-treat analysis (N = 90) demonstrated that both SSGT (ES = 1.36, p < .001) and active control (ES = 1.10, p < .001) groups made progress towards their personally meaningful social goals at follow-up, KONTAKT® participants demonstrated greater progress in social goal attainment than their peers in the active control group (ES = 0.35, p = .04). Findings suggest that KONTAKT® is efficacious in supporting autistic adolescents to achieve their personally meaningful social goals compared to other prosocial group activities.Trial registration: (1) Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12617001117303, registered 31 July 2017, anzctr.org.au; (2) ClinicalTrials.gov: NCT03294668 registered 22 September 2017, https://clinicaltrials.gov .

Pilot of the BOOST-A™: An online transition planning program for adolescents with autism.

BACKGROUND: Many adolescents with autism face difficulties with the transition from high school into post-school activities. The Better OutcOmes & Successful Transitions for Autism (BOOST-A™) is an online transition planning program which supports adolescents on the autism spectrum to prepare for leaving school. This study describes the development of the BOOST-A™ and aimed to determine the feasibility and viability of the program. METHODS: Two pilot studies were conducted. In Pilot A, the BOOST-A™ was trialled by six adolescents on the autism spectrum, their parents, and the professionals who worked with them, to determine its feasibility. In Pilot B, 88 allied health professionals (occupational therapists, speech pathologists, and psychologists) reviewed the BOOST-A™ to determine its viability. RESULTS: Participants rated the BOOST-A™ as a feasible tool for transition planning. The majority of allied health professionals agreed that it was a viable program. Based on participant feedback, the BOOST-A™ was modified to improve usability and feasibility. CONCLUSION: The BOOST-A™ is a viable and feasible program that has the potential to assist adolescents with autism in preparing for transitioning out of high school. Future research will determine the effectiveness of the BOOST-A™ with adolescents across Australia.

The Methodological Quality and Intervention Fidelity of Randomised Controlled Trials Evaluating Social Skills Group Programs in Autistic Adolescents: A Systematic Review and Meta-analysis.

A systematic review and meta-analysis were utilised to explore the methodological quality, program fidelity, and efficacy of social skills group programs (SSGPs) aiming to support autistic adolescents in navigating their everyday social worlds. The study evaluated the methodological quality and theoretical fidelity of studies, with a random effect meta-analysis conducted to summarise the overall efficacy of SSGP and its effect on social communication and interaction, behavioural/emotional challenges, adaptive functioning, and autism characteristics. Although findings from the 18 identified studies indicated an adjusted medium overall effect with these programs successfully supporting autistic adolescents' socialisation needs (g = 0. 60, p < 0.001), most studies demonstrated medium to low program fidelity despite their good methodological quality. Given the significant heterogeneity of SSGPs and variations in the design and measurement frameworks of efficacy studies, understanding the generalisability of the findings of this research is unclear.

Diagnostic procedures in autism spectrum disorders: a systematic literature review.

At present, 'gold standard' diagnosis of autism spectrum disorders (ASD) is a lengthy and time consuming process that requires suitably qualified multi-disciplinary team (MDT) personnel to assess behavioural, historical, and parent-report information to determine a diagnosis. A number of different tools have been developed to assist in determination. To optimise the diagnostic procedures, the best diagnostic instruments need to be identified. This study is a systematic review addressing the accuracy, reliability, validity and utility of reported diagnostic tools and assessments. To be included in this review, studies must have (1) identified an ASD diagnostic tool; (2) investigated either diagnostic procedure or the tools or personnel required; (3) be presented in English; (4) be conducted in the Western world; (5) be one of three types of studies [adapted from Samtani et al. in Cochrane Database Syst Rev 3:1-13, 2011], viz. (a) cohort studies or cross-sectional studies, (b) randomised studies of test accuracy, (c) case-control studies. MEDLINE, PsychINFO, Scopus, EMBASE, and Cochrane Library databases were scrutinised for relevant literature published from 2000 inclusive on 20th January 2012. In total, 68 articles were included. 17 tools were assessed. However, many lacked an evidence base of high quality-independent studies. The Autism Diagnostic Interview-Revised (ADI-R) and Autism Diagnostic Observation Schedule (ADOS) stood out with the largest evidence base and highest sensitivity and specificity. When the ADI-R and ADOS were used in combination they revealed levels of accuracy very similar to the correct classification rates for the current 'gold standard' diagnostic procedure viz. 80.8% for ASD. There is scope for future studies on the use of the ADI-R and ADOS in combination.

Information and repetition change children's visual strategies when viewing magic tricks with and without gaze cues.

Gaze cues and direct gaze attract visual attention. However, few studies have explored visual cues in children within realistic contexts. The effect of information and repetitive stimulus presentation has not been thoroughly studied with dynamic stimuli. The aim of the present study was to investigate how information affects the visual strategies of children measured by the number of fixations on certain areas of interest and their durations. Furthermore, this study examined the effect of gaze cues and direct gaze. In two consecutive experiments, children's visual strategies when viewing magic tricks were measured by an eye tracker. Gaze cues were only present in Experiment 1.The results showed that repetitive stimulus presentation and information caused children to change their visual strategies when viewing magic tricks with and without gaze cues. However, the effect was larger when the gaze cues were not present. These findings in children were similar to those in adults.

Strength-based technology clubs for autistic adolescents: A feasibility study.

Strength-based technology clubs are thought to help autistic adolescents transition to adulthood by developing positive traits, enhancing technical skills, and creating supportive networks. A newly developed strength-based technology club was delivered to 25 autistic adolescents, with the feasibility tested via qualitative and quantitative methods. Autistic adolescents, their parents, and club facilitators participated in separate focus groups, with audio data transcribed and thematically analyzed. Quantitative data was collected via adolescent and parent-reported pretest-posttest measures following the 15-week program. Autistic adolescents were highly satisfied with the club (acceptability), the technology club satisfied an unmet need (demand), with the program demonstrating the potential to be integrated into the current therapy system in Australia (integration). Feasibility areas that could be improved in delivering future clubs are discussed.

Content validity of the instrument 'Picture My Participation' for measuring participation of children with and without autism spectrum disorder in mainland China.

BACKGROUND: Picture My Participation (PMP) is a valid instrument for measuring participation of children with disabilities, but it has not yet been evaluated for its content validity for children with autism spectrum disorders (ASD) in mainland China. AIM: To explore the content validity of the simplified Chinese version of PMP (PMP-C; Simplified) for children with ASD and typically developing (TD) children in mainland China. METHODS: A sample of children with ASD (n = 63) and TD children (n = 63) recruited through purposive sampling were interviewed using the PMP-C (Simplified), which contains 20 items of everyday activities. Children rated attendance and involvement on all activities and selected three most important activities. RESULTS: Children with ASD selected 19 of 20 activities as the most important activity while TD children selected 17 activities. Children with ASD used all scale points for rating attendance and involvement on all activities. TD children used all scale points for rating attendance and involvement in 10 and 12 of 20 activities, respectively. CONCLUSION: The contents of 20 activities of PMP-C (Simplified) were relevant for all children and especially for children with ASD for assessing participation in community, school and home activities.

A Practical Framework for Delivering Strength-Based Technology Clubs for Autistic Adolescents.

Autistic individuals experience poor vocational outcomes internationally. Transition planning and interventions during adolescence may assist in improving outcomes in adulthood. Strength-based technology clubs show promise in improving outcomes for autistic adolescents by developing skills specific to the Information and Communication Technology industry, and fostering positive traits, such as self-determination. Although strength-based technology clubs have been examined with autistic adolescents, to date, no framework has been proposed to underpin their design and delivery. In this conceptual analysis, we propose a practical framework for delivering strength-based technology clubs for autistic adolescents. The framework builds on work from a previous systematic review of qualitative research and a realist evaluation study of technology clubs for autistic adolescents, combined with theoretical understandings from three health models. The new framework comprised the components of interests, value, autonomy, and requirements, forming the acronym IVAR. Interests refer to strategies drawing on adolescents' areas of interest. Value represents a culture of valuing autistic adolescents as individuals for their unique strengths and skills. Autonomy refers to providing opportunities for adolescents to make decisions, and Requirements refers to aspects of the social and physical environment. Practical recommendations of the framework are discussed, including design and delivery of future strength-based technology clubs, facilitator training, and design activities. The proposed IVAR framework may be useful in guiding the development of strength-based technology clubs. Future research is needed to validate the feasibility and efficacy of the IVAR framework in underpinning the delivery of strength-based technology clubs to autistic adolescents.

Why is this topic important?: The shift from adolescence to adulthood can be challenging for young people on the autism spectrum, and opportunities for employment may be limited. Modern approaches to improving employment outcomes for autistic youth highlight the importance of adopting a strength-based framework, such as matching the strengths and interests of autistic young people to future career pathways. The strengths of many autistic individuals are considered beneficial for employment in the Information and Communication Technology (ICT) sector. Strength-based technology clubs provide opportunities for autistic young people to develop their technological and social skills, meet role models working in the ICT industry, and help them to find work experience. What was the purpose of this article?: The purpose of this article was to develop a new framework for delivering strength-based technology clubs to autistic adolescents. The development of this framework was guided by the authors' earlier work in this area. What do the authors conclude?: The authors proposed a new framework for delivering strength-based technology clubs to autistic adolescents. The framework contains four components, creating the acronym IVAR: Interests, Value, Autonomy, and Requirements. The component, Interests, refers to strategies that draw on adolescents' areas of interest, such as changing activities to include adolescents' focused interests. Value represented a culture of valuing autistic adolescents as individuals for their unique strengths and skills. Autonomy refers to providing opportunities for adolescents to make decisions during the program, and Requirements refers to the design of the social and physical environment. What do the authors recommend for future research on this topic?: The authors recommend that future research should focus on exploring how practical and appropriate the IVAR framework is in supporting the delivery of strength-based technology clubs for autistic adolescents. The four IVAR components are potentially applicable to other areas of community focus to guide strength-based approaches more generally within autism research. How will this analysis help autistic adults now and in the future?: This analysis and discussion will provide researchers, autistic individuals, and the community with practical examples of how service providers can apply IVAR to design and deliver strength-based technology programs for autistic adolescents.

Process evaluation of an autism-specific workplace tool for employers.

BACKGROUND: Limited studies exist exploring employers' capacity in hiring and supporting employees on the autism spectrum, and even fewer have considered interventions targeting employers' skills and knowledge in enhancing employment opportunities. In response to this need, the Integrated Employment Success Tool (IESTTM) was developed and its effectiveness established in a randomized controlled trial (RCT). Furthermore, a process evaluation was conducted to determine the usability and implementation of the IESTTM. AIMS/OBJECTIVES: The process evaluation was conducted to determine employers' perceived usability, implementation, and perceived barriers and facilitators in using the IESTTM. MATERIAL AND METHODS: Employers (N = 29) provided their feedback via an online questionnaire. Of these, 11 participants were interviewed, further exploring their experiences. Data were analysed via descriptive statistics and thematic analysis. RESULTS: While employers' frequency and usage of the IESTTM varied across workplaces, it was predominantly used to increase employers' knowledge of autism and implement workplace strategies. A major barrier was the paper-based format of the intervention, with more than 60% of employers indicating the need for an online version. CONCLUSIONS AND SIGNIFICANCE: The process evaluation was a critical step in understanding why the IESTTM was effective, and how it could be further optimized for prospective employers.

"I Met Someone Like Me!": Autistic Adolescents and Their Parents' Experience of the KONTAKT® Social Skills Group Training.

This study captured the experiences of 35 autistic adolescents and their parents after completing a 16-session variant of social skills group training KONTAKT® (ACTRN12617001117303). Semi-structured interviews explored participants' and relatives' perceptions of KONTAKT® and associated social outcomes. Adolescents were classified as either high (HR, n = 23) or low (LR, n = 12) responders based on the primary outcome effects during the previous trial. Thematic analysis revealed that both HR and LR participants their parents were satisfied with KONTAKT®, noting consistent patterns of improvement in adolescents' social understanding, communication, relationships, and empowerment, although positive reports were more frequent among HR than LR groups. This study enhances the understanding of the impact of SSGT, which is key in improving their content, principles, and administration.

'At the End of the Day, It's Love': An Exploration of Relationships in Neurodiverse Couples.

Most autistic people report challenges in initiating and developing intimate, long-term relationships. We used a phenomenological approach to interview thirteen people who were in a neurodiverse intimate relationship (where one partner had a diagnosis of autism) in order to explore the challenges and facilitators both neurotypical and autistic partners experienced. Analysis revealed that ND relationships progressed along similar pathways as non-ND relationships. Facilitators included the strength-based roles that each partner took on and the genuine support and care for each other. Challenges were reported in communication, difficulties reading and interpreting emotions, and idiosyncratic characteristics of the autistic partner. Strategies that both partners used to cope with these challenges and their perspectives of relationship-support services are also presented.

Identifying the Essential Components of Strength-based Technology Clubs for Adolescents with Autism Spectrum Disorder.

Background: Strength-based technology clubs for adolescents with autism spectrum disorder (ASD) have become increasingly popular; however, they remain poorly described in the literature. Before the impact and benefit of strength-based technology clubs can be measured, consistency in their design and delivery must be established. This study aimed to identify the essential components of strength-based technology clubs by exploring context, mechanisms, and outcomes of existing strength-based technology clubs.Method: Twenty-three adolescents with ASD (mean age 12.96 years, SD = 1.86, range = 10-18 years), 25 parents (mean age 46.08 years, SD = 8.27, range = 33-69 years), and 20 facilitators (mean age 27.93 years, SD = 6.55, range = 20-46 years) were purposively sampled from three established strength-based technology clubs. Data were obtained via ethnographic methods, including participant observations, interviews, and focus groups. Data analysis was underpinned by a realist evaluation, which provided the context-mechanism-outcome framework.Results: Data analysis revealed that strength-based technology clubs had four context themes (personal factors of adolescents, personal factors of facilitators, personal factors of parents, institution), three mechanism themes (activity design, strengths and abilities, environment), and three outcome themes (skill building, connection with others, emotion).Conclusion: The results highlighted the importance of understanding the personal context of adolescents, providing an individualized approach, leveraging individual interests, and modifying the environment to suit the individual. The findings contributed to defining a strength-based approach within ASD, and have demonstrated that positive outcomes can be achieved by focusing on strengths rather than deficits. Future ASD services can use the results as a framework for applying a strength-based approach. The efficacy of newly designed strength-based programs can then be tested.

Development and Feasibility of MindChip™: A Social Emotional Telehealth Intervention for Autistic Adults.

The study aims to develop and pilot a telehealth social emotional program, MindChip™ delivered with a computer based interventions (CBI) (Mind Reading©) for autistic adults. MindChip™ combined four theoretical perspectives and community feedback underpinning the essential mechanisms for targeting the social emotional understanding of autistic adults. A randomised pragmatic pilot trial (N = 25) was conducted to explore the feasibility of MindChip™ (n = 11) and to understand the preliminary efficacy of combining it with CBI compared to CBI only (n = 14). The use of MindChip™ and CBI combined demonstrated partial feasibility, with preliminary efficacy findings revealing increased emotion recognition generalisation outcomes compared to CBI only. Further research is required to improve the engagement and personalisation of the intervention for autistic adults.

Success Factors Enabling Employment for Adults on the Autism Spectrum from Employers' Perspective.

Employment outcomes for individuals with autism spectrum disorder (ASD) are poor and there is limited understanding on how best to support individuals with ASD in the workplace. Stakeholders involved in the employment of adults with ASD, including employers and employment service providers have unique insights into the factors influencing employment for this population. Organisational and individual factors facilitating successful employment for adults with ASD across Australia and Sweden were explored, including the supports and strategies underpinning employment success from an employers' perspective. Three themes including Knowledge and Understanding of ASD, Work Environment and Job Match emerged, suggesting that a holistic approach was key to supporting success, with employer knowledge and understanding of ASD underpinning their ability to facilitate employment.

"We Can See a Bright Future": Parents' Perceptions of the Outcomes of Participating in a Strengths-Based Program for Adolescents with Autism Spectrum Disorder.

Autistic individuals often possess strengths and abilities. Despite these strengths, employment outcomes for this population remain low. Strengths-based programs, focusing on developing skills in a supportive environment, may enable autistic adolescents to more effectively prepare for the workforce. This study explores the principal components and associated outcomes of a strengths-based program designed to support autistic children and adolescents to develop interests and skills in Science, Technology, Engineering, Arts, and Mathematics. The baseline results of 52 parents of autistic youth participating in a 3-year longitudinal survey study were explored, with results showing that according to parents the program positively impacted participants' sense of belonging, confidence and self-esteem, health and well-being, social relationships and interactions, and activities and participation.

Cross-Cultural Adaptation to Australia of the KONTAKT© Social Skills Group Training Program for Youth with Autism Spectrum Disorder: A Feasibility Study.

This study investigated the feasibility and cultural validity of KONTAKT©, a manualised social skills group training, in improving the social functioning of adolescents with autism spectrum disorder (ASD). KONTAKT© was delivered to 17 adolescents (mage = 14.09, SDage = 1.43; 70% male) with ASD over sixteen 90 min sessions. A pre-test post-test design evaluated changes in personally meaningful social goals, symptom severity, quality of life, interpersonal efficacy, social anxiety, loneliness, and facial emotion recognition at pre, post and 3 months follow-up. Focus groups were conducted post intervention. Findings indicate that KONTAKT© may support Australian adolescents with ASD in achieving their personally meaningful social goals. This study resulted in finalisation of KONTAKT© in preparation for evaluation of its efficacy in a randomised controlled trial (Australian New Zealand Clinical Registry (ANZCTR): ACTRN12617001117303, ClinicalTrials.gov: NCT03294668).

Multi-informant International Perspectives on the Facilitators and Barriers to Employment for Autistic Adults.

Employment rates for autistic individuals are poor, even compared to those from other disability groups. Internationally, there remains limited understanding of the factors influencing employment across the stages of preparing for, gaining, and maintaining employment. This is the third in a series of studies conducted as part of an International Society for Autism Research (INSAR) policy brief intended to improve employment outcomes for autistic individuals. A multi-informant international survey with five key stakeholder groups, including autistic individuals, their families, employers, service providers, and researchers, was undertaken in Australia, Sweden, and the United States to understand the facilitators and barriers to employment for autistic adults. A total of 687 individuals participated, including autistic individuals (n = 246), family members (n = 233), employers (n = 35), clinicians/service providers (n = 123), and researchers (n = 50). Perceptions of the facilitators and barriers to employment differed significantly across both key stakeholder groups and countries, however, ensuring a good job match and focusing on strengths were identified by all groups as important for success. Key barriers to employment included stigma, a lack of understanding of autism spectrum disorder (ASD) and communication difficulties. Results suggest that a holistic approach to employment for autistic individuals is required, aimed at facilitating communication between key stakeholders, addressing attitudes and understanding of ASD in the workplace, using strength-based approaches and providing early work experience. Autism Res 2020, 13: 1195-1214. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Autistic individuals experience significant difficulty getting and keeping a job. This article presents a survey study involving autistic individuals, their families, employers, service providers and researchers in Australia, Sweden, and the United States to understand their perspectives on the factors that support or act as barriers to employment. While perspectives varied across key stakeholders, strategies such as using a holistic approach, targeting workplace attitudes and understanding, focusing on strengths, and providing early work experience are important for success.

Visual search strategies in a shared zone in pedestrians with and without intellectual disability.

People with intellectual disability (ID) may find shared zones troublesome to negotiate because of the lack of the traditional clearly defined rules and boundaries. With the built environment identified as a barrier to active travel and community access, it is vital to explore how pedestrians with ID navigate shared zones to ensure that this group is not placed in harm's way or discouraged from active travel because of the implications of shared zones. This study investigated the visual strategies of 19 adults with ID and 21 controls who wore head mounted eye trackers in a Shared Zone and at a zebra crossing (as a contrast traffic environment). In total 4750 valid fixations were analysed. Participants with ID fixated on traffic relevant objects at a rate of 68 percent of the control participants. Furthermore, the males with ID were 9(4.4-18.7) times more likely to fixate on non-traffic relevant objects compared with traffic relevant objects, much higher odds than that of females with ID 1.8(0.4-1.7). Zebra crossings appeared to act as a cue, drawing pedestrians' visual attention to the traffic environment, with both groups more likely to look at traffic relevant objects on/at the zebra crossing (66%: 34%). Future implementation of shared zones needs to be carefully considered in relation to the safety of road users with ID and their capacity to identify and assess salient environmental information.

Linking knowledge and attitudes: Determining neurotypical knowledge about and attitudes towards autism.

"Why are neurotypicals so pig-ignorant about autism?" an autistic person wrote on the Curtin Autism Research Group's on-line portal as a response to a call for research questions. Co-produced with an autistic researcher, knowledge about and attitudes towards autism were analysed from 1,054 completed surveys, representing the Australian neurotypical adult population. The majority, 81.5% of participants had a high level of knowledge and 81.3% of participants had a strong positive attitude towards autism. Neither age, nor education level had an impact on attitudes. However, attitudes were influenced by knowledge about 'Societal Views and Ideas'; 'What it Could be Like to Have Autism'; and the demographic variables 'Knowing and having spent time around someone with autism'; and gender (women having more positive attitudes than men). Thus, targeted interventions, geared more towards men than women, to increase knowledge about autism could further improve attitudes and increase acceptance of the autistic community.