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BackgroundThe internet provides an ideal avenue to share information, advice, and support regarding autism. However, many websites lack quality control and rarely provide a one-stop resource for families to access necessary, evidence-based information. ObjectiveThis study aims to use participatory action research (PAR) with end users (ie, parents) and clinicians to develop a web-based resource (Pathways Beyond Diagnosis) to improve timely access to quality, evidence-based information, and support for families after their child is diagnosed with autism. MethodsThe PAR approach involves 4 phases: (1) cooperative researcher-stakeholder planning, (2) cooperative researcher-stakeholder–based action, (3) stakeholder observation, and (4) cooperative researcher-stakeholder reflection. A total of 15 participants (parents, n=3; clinicians, n=9; and researchers, n=3) attended individual or group participatory design workshops. This was followed by the translation of knowledge and ideas generated during the workshops to produce mockups of webpages and content, rapid prototyping, and one-on-one consultations with end users to assess the usability of the website developed. ResultsA total of 3 participatory design workshops were held with the participants, each followed by a knowledge translation session. At the end of the PAR cycle, an alpha prototype of the website was built and a series of one-on-one end user consultation sessions were conducted. The PAR cycle revealed the importance of 6 key topic areas (understanding autism, accessing services, support, gaining funding, putting it all together, and looking into the future) associated with the time of diagnosis, which were incorporated into the beta version of the website. ConclusionsThe development of the Pathways Beyond Diagnosis website using PAR ensures that families have ready access to practical and evidence-based information following a young child’s diagnosis. The website guides families to access relevant, reputable, and evidence-based information in addition to summarizing key challenges encountered after diagnosis (ie, grief, sharing the diagnosis) and the importance of self-care.

The study describes the development and preliminary psychometric validation of the Suicidal Ideation Attributes Scale-Modified (SIDAS-M), a five-item assessment of suicidal ideation for use with autistic adults. Participants (n = 102 autistic adults; 58% women, 34% men, 8% nonbinary; M[subscript age] = 41.75, SD = 12.89) completed an online survey including the SIDAS-M at Time 1 and participated in follow-up interviews at Time 2 ([approximately equal to]111 days later). A single factor solution provided good to excellent fit to the data (comparative fit index = 0.961, Tucker-Lewis index = 0.921; standardized root mean square residual = 0.027), with all items showing good to excellent loadings (0.74-0.91). SIDAS-M total score ([omega]=0.930, bias-corrected and accelerated 95% confidence interval (BCa 95% CI) [0.90, 0.95]) demonstrated good convergent validity, correlating significantly with existing suicide specific ([rho]=0.442-0.698, p<0.001) and well-being measures ([rho]=0.325.-0.505, p[greater than or equal to]0.001), and good divergent validity. Logistic regression controlling for age, gender, and relationship status indicated that SIDAS-M scores at Time 1 significantly predicted suicidal behavior at Time 2, [beta] = 0.462, p < 0.001, [0.032, 0.068]. Receiver operating characteristic curve analysis indicated SIDAS-M has utility discriminating between participants classified at low or above low risk, area under the curve = 0.866, [0.767, 0.966], p < 0.001, with a cutoff score [greater than or equal to]1 providing a potentially useful indicator of increased suicidal risk. Overall, SIDAS-M demonstrated good psychometric properties when used with autistic adults without intellectual disability.

The school-age outcomes of autistic children who received early interventions (EI) remains limited. Adaptive functioning, social, peer play skills, problem behaviours, and attitudes towards school of 31 autistic children who received community-based group early start Denver model (G-ESDM) were compared to 28 age matched autistic children who received other community interventions. Similar adaptive behaviours, social skills, problem behaviours and attitudes towards school were found. Play disruption was the only dimension of play to differ; children that received community interventions demonstrated higher levels of play disruption compared to the G-ESDM group. Children had pervasive challenges in adaptive behaviour, social and play behaviour at school, irrespective of EI type. Thus, ongoing provisions are needed to support development into the school years.

The efficacy of the Australian Disability Employment Services (DES) for autistic jobseekers has not been examined and is currently undergoing Government reform. To help inform the new DES strategy, we sought the views of: 24 autistic individuals; seven family members of autistic individuals, and; 46 DES employees. Data were collected using surveys and interviews. Data were analysed using Mann Whitney tests plus deductive thematic analysis based on Nicholas and colleagues' ecosystems model. Participants highlighted a need to adapt existing policies to enhance flexibility of the DES model. There was participant consensus that DES staff require specific education and training to meet the needs of autistic people. Suggestions to inform the new model of DES for autistic people are made.

Parenting an autistic child can reduce the time parents have to participate in their own interests, but the impact this has on caregiver quality of life is not well understood. The aim in undertaking this scoping review was to examine and describe current research about occupational participation and quality of life among parents of autistic children. Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension guidelines, a comprehensive search of multiple databases was conducted with a systematic selection process resulting in a final set of 70 articles. These included publications related to leisure, community and employment occupations, and quality of life in parents and caregivers of autistic children or children with additional needs. The review revealed the impact of caregiving demands and challenges in raising an autistic child that often take priority over the caregiver's own needs and desires, particularly in occupational participation, which impacts their quality of life. Gaps were identified in the literature on parental occupations and the relationship with quality of life among caregivers of autistic children, particularly fathers. Further investigation into caregiving experiences and examination of the relationship between parental occupations and quality of life in caregivers of autistic children is needed, as the findings can inform the development of suitable supports for them.

We assessed the spoken language of 73 preschool aged children on the autism spectrum receiving community-based early intervention at two time points, approximately 7 months apart. Using the Spoken Language Benchmarks, there was a small non-significant change in the proportion of children transitioning from below, to at or above, Phase 3 (word combinations). Using binomial regression, a model comprising seven of nine clinician-proposed child-related predictors explained 64% of the variance. None of the predictors were individually significant, although a large effect size (OR = 16.71) was observed for children's baseline rate of communicative acts. The findings point to substantial unmet clinical need in children with minimal verbal language, but also the relevance of clinician-proposed predictors of their spoken language outcomes., Author(s): David Trembath [sup.1] , Matt Stainer [sup.1] , Teena Caithness [sup.1] , Cheryl Dissanayake [sup.2] , Valsamma Eapen [sup.3] , Kathryn Fordyce [sup.4] , Veronica Frewer [sup.5] , Grace [...]

The school-age outcomes of autistic children who received early interventions (EI) remains limited. Adaptive functioning, social, peer play skills, problem behaviours, and attitudes towards school of 31 autistic children who received community-based group early start Denver model (G-ESDM) were compared to 28 age matched autistic children who received other community interventions. Similar adaptive behaviours, social skills, problem behaviours and attitudes towards school were found. Play disruption was the only dimension of play to differ; children that received community interventions demonstrated higher levels of play disruption compared to the G-ESDM group. Children had pervasive challenges in adaptive behaviour, social and play behaviour at school, irrespective of EI type. Thus, ongoing provisions are needed to support development into the school years., Author(s): Zoe Vinen [sup.1] [sup.2] , Megan Clark [sup.1] [sup.2] , Cheryl Dissanayake [sup.1] Author Affiliations: (1) grid.1018.8, 0000 0001 2342 0938, Olga Tennison Autism Research Centre, La Trobe University, [...]

Nepalese Female Community Health Volunteers' (FCHVs) knowledge on social attention and communication development and the early signs of autism was evaluated before, immediately after, and 12-months following training on typical and atypical social-communicative development in infants/toddlers, early signs of autism, and monitoring of key "markers" of autism using Social Attention and Communication Surveillance. FCHVs (N = 60) significantly improved their knowledge about autism and reported increased perceived confidence in monitoring and referring young children at high likelihood of autism following training, which was sustained one year later. FCHVs also reported a positive impact of training on their work. These findings indicate the effectiveness of training in improving FCHVs' knowledge and perceived confidence to monitor and refer young children at high likelihood of autism.

Background: There is growing understanding of the potential benefits of a multi-method approach to accurately capture language skills of children on the autism spectrum. Tools such as Language ENvironment Analysis (LENA) provide an efficient means of capturing and analysing early child vocalizations (CVs) and the language learning environment. While developed to capture whole-day recordings of child language in naturalistic settings, there is potential utility in capturing, but little knowledge about, primary LENA metrics--including CVs and conversational turns (CTs)--and novel metrics, such as vocalization ratios (VRs), sampled in clinical practice settings where children are often seen. Moreover, recent research indicates that the novel VR may offer a broad indicator of children's developmental level, beyond just their language abilities, a hypothesis yet to be investigated in a large sample of children for whom the LENA was designed (i.e., pre-schoolers). Aims: To explore the extent to which primary and novel LENA metrics collected during brief one-to-one clinical interaction was a useful indicator of developmental outcomes for children on the autism spectrum. Methods & Procedures: Participants were recruited as part of an on-going research programme evaluating early intervention outcomes (n = 99; age 14-47 months). Language samples were collected at intake (T1) using the wearable LENA Digital Language Processors during a one-to-one, play-based assessment with a clinician. Direct (Mullen Scales of Early Learning--MSEL) and parent-report (Vineland Adaptive Behavior Scales--VABS) measures of verbal and non-verbal skills were also collected at intake (T1) and again at exit (T2), approximately 12 months later. Outcomes & Results: Few correlations were observed between child measures and CVs, a primary LENA metric. The novel VR metric was associated with concurrent direct assessment (MSEL) (and to a lesser extent parent report; VABS) measures of verbal and non-verbal skills, with moderate positive correlations found between VRs and all directly assessed subscale scores. However, VRs did not uniquely contribute to the prediction of child outcomes when baseline skills were also considered. Conclusions & Implications: The novel VR may provide an insight into autistic children's overall development in addition to their language ability, suggesting that even when collected in a short recording format, LENA might be a useful component of a multi-method assessment approach.

Parents from individualist cultures (those focused on autonomy of individuals; that is, Australian) may view their autistic children differently compared to parents from collectivist cultures (where community needs are valued over an individual's, that is, South-East Asian cultures). As most research on autism and parenting has been undertaken in Western individualist cultures, knowledge of parenting beliefs and mental health within collectivist cultures is lacking. We compared the mental health, quality of life, well-being and parenting sense of competency between families raising an autistic child from two groups: 97 Australian parents and 58 parents from South-East Asian backgrounds. Children from both groups were receiving the same community-based early intervention. No group differences were found on the measures of mental health but, when compared to Australian parents, parents from South-East Asian backgrounds reported higher well-being and less impact on their quality of life resulting from their child's autism-specific difficulties. Furthermore, a positive association between well-being and quality of life was only observed for South-East Asian parents. Hence, the views of, and responses to, disability for South-East Asian parents may act as a protective factor promoting well-being. This novel research indicates that culture plays a role in parenting autistic children and highlights the need to accurately capture cultural background information in research.

Our aim was to explore insights from clinical practice that may inform efforts to understand and account for factors that predict spoken language outcomes for children with Autism Spectrum Disorder who use minimal verbal language. We used a qualitative design involving three focus groups with 14 speech pathologists to explore their views and experiences. Using the Framework Method of analysis, we identified 9 themes accounting for 183 different participant references to potential factors. Participants highlighted the relevance of clusters of fine-grained social, communication, and learning behaviours, including novel insights into prelinguistic vocal behaviours. The participants suggested the potential value of dynamic assessment in predicting spoken language outcomes. The findings can inform efforts to developing clinically relevant methods for predicting children's communication outcomes.

Nepalese Female Community Health Volunteers' (FCHVs) knowledge on social attention and communication development and the early signs of autism was evaluated before, immediately after, and 12-months following training on typical and atypical social-communicative development in infants/toddlers, early signs of autism, and monitoring of key 'markers' of autism using Social Attention and Communication Surveillance. FCHVs (N = 60) significantly improved their knowledge about autism and reported increased perceived confidence in monitoring and referring young children at high likelihood of autism following training, which was sustained one year later. FCHVs also reported a positive impact of training on their work. These findings indicate the effectiveness of training in improving FCHVs' knowledge and perceived confidence to monitor and refer young children at high likelihood of autism., Author(s): Rena Shrestha [sup.1] , Josephine Barbaro [sup.1] , Cheryl Dissanayake [sup.1] Author Affiliations: (1) grid.1018.8, 0000 0001 2342 0938, Olga Tennison Autism Research Centre, School of Psychology and Public [...]

Researchers have begun to explore the characteristics and risk factors for autistic burnout, but assessment tools are lacking. Our study comprehensively examined and compared the psychometric properties of the unpublished 27‐item AASPIRE Autistic Burnout Measure (ABM), and personal and work scales of the Copenhagen Burnout Inventory (CBI) to evaluate their efficacy as screening measures for autistic burnout, with a group of 238 autistic adults. Exploratory factor analyses (EFA) revealed a 4‐factor structure for the ABM and a 2‐factor structure for the CBI personal scale (CBI‐P). Factorial validity and dimensionality were examined with four exploratory models which indicated a unidimensional structure for the ABM with an overarching 'Autistic Burnout' construct, and multidimensional CBI‐P structure comprising two subscales and overarching 'Personal Burnout' construct. Other reliability and validity indicators included Spearman correlations, analysis of variance, receiver operating characteristics, sensitivity, specificity, and intra‐class correlations (ICC). The ABM and CBI‐P were strongly correlated with depression, anxiety, stress, and fatigue. Unexpectedly, correlations between the burnout measures and camouflaging, and wellbeing measures were moderate. Potential overlap between burnout and depression and fatigue was examined through EFA, which supported convergent validity of the ABM and depression measure, while correlations and ICC analyses revealed mixed results. We concluded that the ABM and the CBI‐P Emotional Exhaustion subscale were valid preliminary screening tools for autistic burnout. Testing with larger and more diverse autistic samples is required to further examine the psychometric properties of the ABM, and to understand the relationships between autistic burnout and depression, and masking. Lay Summary: Early research shows that autistic burnout could be very harmful and can have negative consequences for the mental health and wellbeing of autistic people. Outside the autistic community, most people do not know about autistic burnout, so we need to find ways for healthcare providers and researchers to identify and measure the condition. This study tested two burnout questionnaires, the new AASPIRE Autistic Burnout Measure (ABM) and the Copenhagen Burnout Inventory (CBI) to compare how well they were able to detect and measure autistic burnout among a group of 238 autistic adults. We also examined whether the ABM was measuring a unique condition called 'Autistic Burnout' or if the symptoms were better described by measures of depression and fatigue. Our research found that both the ABM and 'Emotional Exhaustion' subscale of the CBI‐P accurately detected self‐reported autistic burnout among the study participants, but more testing is needed with more diverse groups of autistic people, and those with higher support needs. We also need to explore the relationship between autistic burnout and depression further. [ABSTRACT FROM AUTHOR]

This study examined age trends in anxious and depressive symptoms, from older adolescence to old age, and explored the association between anxious and depressive symptoms with gender, ASD severity, and socio-economic factors. Two hundred and fifty-five individuals with ASD (151 males, M[subscript age] = 33.52 years, SD[subscript age] = 14.98) took part. More than one-third of participants reported clinically significant anxiety (38.4%) or depression (38%). A slight trend for an increase in the severity of both anxiety and depression from adolescence to middle adulthood, and then a slight decline in older adulthood was found. Female gender and higher ASD severity predicted more anxiety and depression symptoms. Our findings emphasise the need to provide timely assessment and treatment of anxiety and depression in ASD.

The study examined the association between autism traits and parenting when raising a typically developing (TD) child, and differences in parenting needs between parents with high and low traits. Fifty-eight parents with a blood relative with Autism (who happened to be an offspring with ASD in all cases) and a TD child completed the Autism Quotient, demographic and psychological information, as well as reporting on Parenting Sense of Competence, the Parent-Child Relationship, and Parenting Needs. Autism traits did not uniquely contribute to parenting self-esteem, but were associated with parenting difficulties for their TD child, and some aspects of this parent-child relationship. Parents with high autism traits reported more parenting difficulties than parents with low traits. The study identified specific aspects of parenting needing support to assist parents with high autism traits prosper in their parenting role.

The aim of this study was to identify emotion regulation (ER) strategies that most strongly impact momentary mood in a sample of 23 adults with and 19 without autism spectrum disorder (ASD). Participants completed cognitive and behavioural assessments, online questionnaires, and experience sampling methodology questions. In the ASD group, the use of dampening and other-blame reduced mood while savouring and emotional acceptance improved mood. The use of self-blame and avoidance negatively impacted mood only in the non-ASD group, suggesting the use of these two strategies do not reduce mood in individuals with ASD. ER and mental health interventions should capture ER strategy use and aim to decrease maladaptive strategy use and increase adaptive strategy use.

Parent and Teacher perspectives of social skills, peer play and problem behaviours in school-age children with Autism Spectrum Disorder (ASD) were investigated. Forty-three parents and 35 teachers of children with an ASD aged between 7 and 9 years completed the Social Skills Improvement System (SSIS), reporting on the social skills and problem behaviours, and the Penn Interactive Peer Play Scale (PIPPS) capturing three dimensions of play: "play interaction," "play disconnection" and "play disruption." Parents and teachers reported similar social skills (SSIS) and peer interaction skills (PIPPS) and similar levels of disruption in play (PIPPS). However, informants differed in their report of play and problem behaviours with parents reporting more play disconnection (PIPPS) and problem behaviours (SSIS), indicating that these may have been highest within the home. Both informants highlighted similar difficulties in children's ability to engage in play, even when invited to do so, and a greater withdrawal from other children resulting in higher peer/sibling rejection across settings. The implications of parent teacher disparity are discussed in relation to home-school collaboration. Identifying factors that contribute to the disparity between informants perceptions may increase understanding and more effective collaboration between parents and teachers, to improve the learning outcomes of student with ASD.

Previous research has found multiplex (MPX) children have an advantage in cognition compared to simplex (SPX) children. However, MPX parent's previous experience with older diagnosed siblings has not been considered. We used a large database sample to investigate the MPX advantage and contribution of birth order. Children from the Autism Genetic Resource Exchange (AGRE) were stratified into first- (MPX[superscript 1], n = 152) and second-affected MPX (MPX[superscript 2], n = 143), SPX (n = 111), and only-child SPX (SPX[superscript OC], n = 23) groups. Both MPX groups had higher cognitive scores compared to SPX groups, with no differences between MPX[superscript 1] and MPX[superscript 2] groups. No differences were found for autism symptoms or adaptive behaviour. These results suggest parent experience due to birth order is an unlikely contributor to the MPX cognitive advantage.

A major topic of debate is whether children with autism spectrum disorder should be educated in inclusive or specialized settings. We examined the feasibility and preliminary effectiveness of delivering the Group-Early Start Denver Model to children with autism spectrum disorder in inclusive versus specialized classrooms. We randomly assigned 44 preschoolers with autism spectrum disorder to receive the Group-Early Start Denver Model across one school calendar year in classrooms that included only children with autism spectrum disorder or mostly children who were typically developing. Blind-rated indicators of teaching quality showed similar results across settings, which were above the local benchmark. Children showed improvements across blinded proximal measures of spontaneous vocalization, social interaction, and imitation and across distal measures of verbal cognition, adaptive behavior, and autism symptoms irrespective of intervention setting. Mothers of participants experienced a reduction in stress irrespective of child intervention setting. Across both settings, age at intervention start was negatively associated with gains in verbal cognition. Delivery of Group-Early Start Denver Model in an inclusive setting appeared to be feasible, with no significant differences in teaching quality and child improvements when the program was implemented in inclusive versus specialized classrooms. [This article was written with the Victorian ASELCC Team.]

The current study investigated the age of diagnosis (AoD) of autism spectrum disorder (ASD) in Nepal by using de-identified data on 246 children with a diagnosis of ASD registered at AutismCare Nepal Society from 2010 to 2015. The mean AoD in children was 58 months (range 14-187 months). Majority of children were male (76%), lived in the Kathmandu valley (75%), and were from upper caste groups (62%). The mean diagnostic age of ASD in Nepal is much later than the age at which a reliable diagnosis is possible, indicating the need to reduce the gap between the age at which it is possible to diagnose ASD, and the average age at which ASD is currently diagnosed.

Emotion regulation has been proposed to be a transdiagnostic factor in the development and maintenance of psychopathology in the general population, yet the nature of the relationships between emotion regulation strategy use and psychological well-being has not been comprehensively explored in individuals with autism spectrum disorder (ASD). The aim of this study was to assess how the individual differences in self-reported emotion regulation strategy use relate to levels of both positive and negative psychological well-being. In total, 56 individuals with ASD aged 14-24 years (M[subscript age] = 18.15; SD[subscript age] = 2.30) completed Emotion Regulation Questionnaire, Diagnostic and Statistical Manual of Mental Disorders-5 Generalized Anxiety Disorder Dimensional Scale, Patient Health Questionnaire-9, Warwick-Edinburgh Mental Well-being Scale and Autism-Spectrum Quotient -- Short. Individuals were grouped into four clusters based on their Emotion Regulation Questionnaire subscale scores. Individuals in the high suppression and low reappraisal group expressed higher depressive symptoms and lower positive well-being when compared with the low suppression and high reappraisal group. Interestingly, individuals who self-reported using both high suppression and reappraisal expressed relatively high positive well-being and low depression symptoms. We suggest that the maladaptive effect of habitual suppression usage may be buffered by the habitual use of reappraisal, and this interaction between adaptive and maladaptive emotion regulation strategy use has clinical implications.

Autistic adults are willing and able employees but face a number of barriers to gaining and maintaining meaningful employment, one of which is a lack of exposure to work experience and workplace training opportunities. A case study of an autism specific employment program is presented, which provided an opportunity for autistic candidates to learn role-related tasks at the employment site over an extended training and assessment period, and comprehensive training and transition support for successful applicants. To date, limited data exists evaluating autism-specific hiring programs involving a vocational education and training component, which is addressed by this study. To evaluate the program, one-on-one interviews were conducted, approximately three months post-employment, with the successful autistic employees; focus groups were also conducted with their co-workers. The study identified a number of positive aspects of the program (e.g. extended exposure to the role and workplace prior to role start, individual support, modifications), and areas for improvement (e.g. further training for co-workers). The findings suggest that programs that provide extended onsite vocational training and support may benefit autistic job candidates and allow an effective transition into the workplace.