Autistic patients' experiences of the hospital setting: A scoping review.

AIM: To explore the factors that affect the experiences of autistic patients in the hospital setting. DESIGN: A scoping review. DATA SOURCES: A systematic literature search using the databases CINAHL, Medline and Google Scholar was undertaken in September 2021 and updated in January 2023. This review is based on the methodological framework of Arksey and O'Malley (International Journal of Social Research Methodology, 8(1):19-32, 2005), which was further refined by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. RESULTS: Autistic patients, as well as their families and healthcare staff, face several barriers that can impact their healthcare experiences within hospital settings. Of 211 articles screened, 30 were eligible and included. Through our review, we identified two main themes. The first theme, 'challenges to hospital experiences', includes four sub-themes: (1) communication, (2) a mismatch between the needs for autistic patients and the hospital environment, (3) challenges related to parents' experiences and (4) challenges related to hospital systems. The second theme, 'facilitators that improve hospital experiences', includes three sub-themes: (1) provision of care pathways, (2) partnership between parents and experts and (3) facilitators to improve hospital systems. By understanding these themes, we can work to address the barriers that autistic patients and their families face, while leveraging the facilitators to improve their hospital experiences. CONCLUSION: It is critical to understand the experiences of autistic patients in the hospital setting because they present a substantial risk of hospital admission due to their associated acute to chronic health conditions. Additionally, nurses and other medical staff must understand the unique hospital experiences and challenges of autistic patients to improve care and facilitate better hospital experiences. This review further highlights the crucial need to adopt a collaborative and inclusive approach between autistic patients, their families and healthcare staff. To achieve this, co-design initiatives that incorporate the perspectives and lived experiences of the autistic community are necessary. By placing autistic voices at the forefront of these initiatives, it is hoped that changes are meaningful, relevant and can be sustained. IMPACT: Understanding the unique hospital experiences and challenges of autistic patients can improve their quality of life and well-being by reducing stress and anxiety during hospitalization, leading to better health outcomes and potentially shorter hospital stays. It can also promote a more positive view of healthcare among autistic individuals, encouraging them to seek medical care when needed and have broader societal impacts such as reducing healthcare costs and improving the overall health and well-being of the population. Autistic patients present a substantial risk of hospital admission due to their associated acute to chronic conditions. Nurses and other medical staff must understand the unique hospital experiences and challenges of autistic patients to improve care and facilitate better hospital experiences. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Study protocol for an evaluation of ASDetect - a Mobile application for the early detection of autism.

BACKGROUND: Autism Spectrum Conditions (ASC) can be reliably diagnosed by 24 months of age. However, despite the well-known benefits of early intervention, there is still a research-practice gap in the timely identification of ASC, particularly in low-resourced settings. The Social Attention and Communication Surveillance (SACS) tool, which assesses behavioural markers of autism between 12 to 24 months of age, has been implemented in Maternal and Child Health (MCH) settings, with excellent psychometric properties. ASDetect is a free mobile application based on the SACS, which is designed to meet the need for an effective, evidence-based tool for parents, to learn about children's early social-communication development and assess their child's 'likelihood' for ASC. STUDY AIMS: The primary aim of this study is to evaluate the psychometric properties of ASDetect in the early detection of children with ASC. A secondary aim is to assess ASDetect's acceptability and parental user experience with the application. METHODS: Families are recruited to download the application and participate in the study via social media, health professionals (e.g., MCH nurses, paediatricians) and word of mouth. All participating caregivers complete a demographic questionnaire, survey regarding their user experience, and the Social Responsiveness Scale-2 (SRS-2), an autism screening questionnaire; they are also invited to participate in focus groups. Children identified at 'high likelihood' for ASC based on the ASDetect results, the SRS-2 or parental and/or professional concerns undergo a formal, gold-standard, diagnostic assessment. Receiver Operating Characteristic analyses will be used to assess psychometric properties of ASDetect. Thematic analyses will be used to explore themes arising in the focus groups to provide insights regarding user experiences with the app. Multiple regression analyses will be carried out to determine the extent to which demographic factors, parental stress and beliefs on health surveillance and child results on ASDetect are associated with the parental user-experience of the application. DISCUSSION: With a strong evidence-base and global access, ASDetect has the potential to empower parents by providing them with knowledge of their child's social-communication development, validating and reassuring any parental concerns, and supporting them in communicating with other health professionals, ultimately enhancing child and family outcomes and well-being.

Interaction Behaviors of Bilingual Parents With Their Young Children With Autism Spectrum Disorder.

Given concerns that bilingual exposure might confuse children with disabilities-including autism spectrum disorder (ASD)-bilingual parents may restrict exposure to one language, often the community-dominant language. We investigated a potential consequence of this decision; the possibility that non-native language use might influence parental communicative behaviors during interaction with the child. We recruited 39 parent-child dyads, each with a young child with ASD (mostly boys) and parent/carer (mostly mothers). Parents were either monolingual speakers of community-dominant English (n = 20) or bilingual with English as the second language (n = 19). We confirmed our assumption that the latter group would have significantly poorer non-native English language via standardized assessment of expressive vocabulary, and ensured children were matched on age, ASD symptoms, and developmental level. We sampled parent-child interaction-including in each of bilinguals' native and non-native languages-and coded parents' amount and complexity of speech, communicative synchrony, and imitations and expansions of their child's speech. Few differences presented across bilingual parents' native versus non-native language samples, but this group showed reduced synchrony and use of expansions compared to monolinguals. Further, bilinguals' English-language knowledge was associated with self-reported comfort using this language and with two coded interaction measures. These empirical data only partially support qualitative accounts that non-native language use may influence bilingual parents' interaction behaviors with their young children. With growing rates of ASD diagnosis and increasing cultural/linguistic diversity around the world, further dedicated clinical and experimental attention to this issue is clearly warranted.

Mapping the diagnosis of autism spectrum disorders in children aged under 7 years in Australia, 2010-2012.

OBJECTIVES: To investigate the frequency and age at diagnosis of autism spectrum disorder (ASD) in children aged under 7 years living in Australia. DESIGN AND PARTICIPANTS: Analysis of de-identified data on 15 074 children aged under 7 years registered with the Helping Children with Autism Package (HCWAP; a program that provides funding for access to early intervention and support services throughout Australia) between 1 July 2010 and 30 June 2012. MAIN OUTCOME MEASURES: Age at diagnosis of ASD as confirmed by a paediatrician, psychiatrist and/or multidisciplinary team assessment. RESULTS: The average age at diagnosis of ASD in children registered with the HCWAP is currently 49 months, with the most frequently reported age being 71 months. Differences were evident in age at diagnosis across states, with children in Western Australia and New South Wales being diagnosed at a younger age. Across Australia, 0.74% of the population of children aged under 7 years are currently diagnosed with ASD and registered with the HCWAP. A higher proportion of children were registered with the HCWAP in Victoria compared with other states. There was no difference in age at diagnosis between Indigenous and non-Indigenous Australians, but children from a culturally and linguistically diverse background were diagnosed 5 months earlier than other children. CONCLUSIONS: There may be a substantial gap between the age at which a reliable and accurate diagnosis of ASD is possible and the average age that children are currently diagnosed. The frequency of ASD diagnoses in Australia has increased substantially from previously published estimates.

"Maybe No One Knows We Need Help": Understanding the Experiences of Autistic Working Mothers in Australia.

Background: Although there are no known studies investigating autistic working mothers, research has demonstrated that managing employment and motherhood in non-autistic populations has specific challenges, as does employment in autistic populations. This autistic-led study aimed at investigating the experience of autistic working mothers to identify benefits, challenges, and support needs. Methods: We utilized a subjectivist epistemological perspective to learn about the experiences of autistic working mothers. We recruited 10 autistic working mothers (aged 34-50 years) via social media advertisements, who participated in a 45- to 60-minute semi-structured interview where we asked questions developed in consultation with a community reference group. We transcribed interviews and then analyzed them using inductive reflexive thematic analysis. Results: We identified three key themes. The first theme, "Wellbeing: Work gives me purpose," discusses how employment supports mental well-being. The second theme, "Challenges: It's hard being an autistic working mother," includes the challenges of balancing work and caregiving, guilt related to being a working mother, and issues with part-time work. The third theme, "The invisible disability: Everyone thinks I look okay," discusses the lack of understanding of participants' challenges, with assumptions they are coping, and the lack of supports that led to some participants no longer seeking assistance. Conclusions: The responses of the autistic women who took part support a view that autistic working mothers may experience some similar challenges to non-autistic working mothers, including stress in juggling caring and work roles. They identified additional challenges related to their gender and their autistic identity, including a lack of understanding of the female (or "internalized") presentation of autism. These findings will help autistic working mothers by promoting a better understanding of their experiences and challenges when they speak with health professionals, government, and employers seeking support and accommodations.

Why is this an important issue?: We did not find any existing research about the experiences of autistic women who are working mothers. However, we felt this was an important topic to investigate because previous research involving women who are not autistic has reported that being a working mother can be challenging. In addition, previous autism research has found that autistic people can find aspects of work difficult. What was the purpose of this study?: We wanted to find out about the experiences of autistic working mothers and their support needs. What did the researchers do?: We recruited 10 autistic working mothers (aged 34­50 years), through social media advertisements. We interviewed each participant separately and the interviews took between 45 and 60 minutes. We asked each participant the same set of questions to understand their perspectives on the benefits and challenges of being a mother, an employee, and a working mother, and to find out where they needed support. We then analyzed the interview transcripts to find common themes. What were the results of the study?: We identified three key themes about the experience of autistic working mothers. The first theme called "Wellbeing: Work gives me purpose" discusses how employment supports mental well-being and financial independence. The second theme, "Challenges: It's hard being an autistic working mother," includes the challenges in balancing work and caregiving, guilt related to being a working mother, and issues with part-time work. The third theme called "The invisible disability: Everyone thinks I look okay" discusses a lack of understanding of participants' challenges, with assumptions they are coping, and the lack of supports for autistic working mothers that led to some participants no longer seeking assistance. What do these findings add to what was already known?: We found that autistic working mothers may experience some challenges, which are similar to those identified in previous studies involving working mothers who are not autistic such as stress related to juggling being a mother and an employee. In addition to this, they may experience other challenges related to their gender and their autism, such as a lack of understanding of how autistic women mask and camouflage and assumptions by professionals that autistic working mothers are coping because they previously managed employment and parenting without any support. What are the potential weaknesses in the study?: One limitation of our study is that the participant group lacks diversity. For example, it does not include autistic people from a range of cultural backgrounds such as First Nations Australians, or from a range of educational and socio-economic backgrounds. Although the study was open to participants who identify their gender as non-binary, no non-binary autistic people registered for the study. This meant our results only included the views of autistic working mothers who identify as women and have completed further education after high school. In addition, 90% of participants were diagnosed with autism as adults. Although late diagnosis is common, especially in women, it may also mean that some of the results were specific to this group. Future research could address these issues by having a larger participant group, which specifically includes those from diverse cultural, educational, and socioeconomic backgrounds, gender diverse participants, and both early- and late-diagnosed autistic women and non-binary people. How will these findings help autistic adults now or in the future?: These findings will help autistic working mothers by promoting a better understanding of their experiences and challenges when they speak with health professionals, government, and employers seeking support and accommodations.

Leisure, community, workforce participation and quality of life in primary and secondary caregivers of autistic children.

Parents of Autistic children often modify their participation in leisure, social, and employment activities to meet the caregiving needs of their child. However, few studies have examined the impact this has on caregiver quality of life (QoL). The aim in the current study was to examine the role of participation in a range of activities on QoL amongst primary and secondary caregivers of school-aged Autistic children. Eighty-eight primary (93% mothers) and 63 secondary (91% fathers) caregivers of Autistic children (aged 7- to 12-years) participated in this cross-sectional study, with time pressure, participation, social support, parenting stress, and QoL measured via an online questionnaire. Compared to secondary caregivers, primary caregivers reported fewer employment hours, increased time pressure, less participation in desired activities, and higher perceived responsibility of domestic and child-rearing tasks. Similar levels of leisure frequency, parenting stress, and QoL were identified by both caregivers. Hierarchical regression revealed caregiver participation as important for QoL in both primary and secondary caregivers. However, when measures of caregiver well-being were added to the model, the unique contribution of participation to QoL was reduced, particularly for secondary caregivers. Overall, the findings demonstrate that despite differences in caregiver roles and responsibilities, participation in meaningful activities was important for QoL in all caregivers.

Child and caregiver predictors of primary caregiver participation in families of school-aged Autistic children.

Engaging in meaningful activities (e.g., leisure, spiritual, fitness) significantly affects caregivers' quality of life (QoL), yet the determinants of participation in caregivers of Autistic children remain largely unknown. The current study examined child and caregiver correlates of primary caregiver participation in meaningful activities. One hundred and six primary caregivers of Autistic children (7-12 years) were recruited from three unique cohorts of Autistic children in this cross-sectional study. Primary caregivers completed online questionnaires measuring occupational gaps (i.e., desired activities caregivers are not participating in), QoL, parenting stress, perceived family outcomes, and social support. In addition to undertaking direct assessments of children's cognition and language, primary caregivers also reported on their child's adaptive behavior, social-emotional skills, and participation. Caregivers reporting fewer occupational gaps (i.e., ≤2 desired activities) were more likely to have Autistic children with no co-occurring conditions, who were older, and with better adaptive behaviors, social-emotional skills, and more frequent home and school participation, compared to caregivers reporting many gaps (i.e., ≥3 desired activities). Caregivers with fewer occupational gaps also reported improved QoL, parenting stress, social support, perceived community inclusiveness, and family outcomes. Logistic regression analysis identified child age, child adaptive behavior, social-emotional skills, home participation, and the caregivers' perceived family outcomes and QoL as important predictors of their occupational gaps. The findings demonstrate that caregiver participation in desired activities was associated with increased functional ability and independence of the child, as well as their perceived capacity to meet their child's needs. Supporting parents' sense of efficacy in meeting their children's needs and building their skills and knowledge will serve to improve both caregiver and child outcomes.

Development, delivery, and evaluation of a training program for the early identification of autism: Monitoring of Social Attention, Interaction, and Communication.

Introduction: Early identification of Autistic children is an important precursor to diagnosis, and access to supports and services. Here we describe the training of the maternal and child health (MCH) workforce in the state of Victoria, Australia in the early identification of infants and toddlers with a high likelihood of autism. Methods: In 2019, 1,428 MCH nurses completed early autism training held at venues across the state, with an additional 82 nurses completing online-only training. A training needs analysis enabled the research team to determine the workforce's current skill and knowledge levels, and to identify knowledge gaps, training needs and workplace barriers. The professional development program, known as Monitoring of Social Attention, Interaction, and Communication (MoSAIC), comprised: online pre-workshop modules; a face-to-face instructor-led workshop, which included the use of the Social Attention and Communication-Revised (SACS-R) tool; and online post-workshop modules, which included a recording of a face-to-face workshop with all accompanying resources. This was the first time that the MCH workforce received this training package. Attendees were asked to complete a training satisfaction survey immediately following the face-to-face instructor-led workshop and a follow-up survey regarding their autism knowledge and SACS-R implementation 4-6 weeks after the workshop. Results: Over 90% (n = 325) of MCH nurses who completed the training satisfaction survey agreed or strongly agreed with statements that the training was clear and of high quality. Most nurses also reported that the training was well-presented and that they would recommend it to a colleague. In the 6 months following the training, a total of 82,581 SACS-R assessments were conducted by the MCH workforce, reflecting that MCH nurses had successfully integrated SACS-R assessments into their work practice after receiving the early autism identification training. Discussion: This study demonstrated that training on the early identification of autism can be successfully designed, customized, and delivered to a large primary healthcare workforce for universal developmental surveillance of autism.

Who Is Attending? The Role of Child Ethnicity and Maternal Demographics in Research Engagement and Early Identification of Autism.

Inequitable access to early autism developmental surveillance is evident globally. However, there is limited research examining autism diagnosis, ethnicity, and community profiles when engaging in research for the early identification of autism. We aimed to understand the relationships between child ethnicity, maternal demographics, and autism diagnosis, comparing retrospective data from the 2016 census for eight local government areas (LGAs) in Victoria, Australia. Maternal and child health (MCH) nurses monitored 13,511 children under 42 months for the early signs of autism using the Social Attention Communication Surveillance-Revised (SACS-R) and SACS-R Preschool (SACS-PR) tools during well-child checks. Of these, 340 children with a "high likelihood" of autism attended developmental assessments. Participants' maternal ethnicity ('European maternal ethnicity', EME; 'non-European maternal ethnicity,' N-EME; 'mixed maternal ethnicity,' MME'), socioeconomic factors, and autism prevalence were compared to their LGA community. Results indicated that study participants were representative of their LGA communities, though bi- and multilingualism was higher in our cohort. Differences in current maternal employment, maternal education, annual family income, and autism prevalence were found between the N-EME, EME, and MME groups. Our study found that research engagement was driven by maternal education, maternal employment, and annual family income, and further research is required to understand these relationships.

Leisure, Employment, Community Participation, and Quality of Life in Primary Caregivers of Autistic Children: A Qualitative Study.

PURPOSE: In prioritising the needs of their autistic children, parents often modify their own participation across leisure, social, and workforce activities. Few studies have examined the impact these modifications have on caregiver quality of life (QoL). The aim in the current study was to examine how parenting their autistic child/ren impacts parent's participation and QoL. METHODS: Twenty primary caregivers (29-48 years, all female) of autistic children (7-11 years) were interviewed online about their participation in leisure, community, and employment activities including the impact of COVID-19. RESULTS: Five themes with underlying subthemes were identified using reflexive thematic analysis. The themes were: (1) Reflecting on the important things in life, (2) Getting access to everything needed, (3) Barriers to participation in meaningful activities, (4) Facilitators of participation in meaningful activities, and (5) Participation through the COVID-19 pandemic. CONCLUSION: The findings highlight the importance of regular participation in meaningful activities for parents of autistic children and the support needed by them, particularly single parents, to achieve balance between meeting caring responsibilities and their own participation needs.

Investigating autism knowledge, self-efficacy, and confidence following maternal and child health nurse training for the early identification of autism.

Introduction: Early identification of children with a high likelihood of autism can lead to referral for diagnostic services and access to early supports, resulting in improved outcomes for children and families. Maternal and Child Health Nurses (MCHNs) in Victoria, Australia, are well-placed to monitor infants and toddlers for signs of autism, given children and caregivers attend free, regular, well-baby consultations from birth through to school age. This study aimed to identify the impact of personal and workplace factors on MCHNs' competencies of autism knowledge, self-efficacy in identifying autistic infants and toddlers, and confidence in speaking to parents/caregivers about autism. Additionally, the study sought to identify which personal and workplace factors might predict increased competency in these areas. Methods: After identifying training needs and current competency levels via a training needs analysis (TNA), 1,428 MCHNs received training on the early signs of autism and in the use of the Social Attention and Communication Surveillance-Revised (SACS-R) tool for early autism identification; the training program was known as Monitoring of Social Attention, Interaction, and Communication (MoSAIC). Results: Previous MCHN autism training and knowledge of autism community resources significantly contributed to increased MCHN self-efficacy in identifying autistic infants and toddlers, while knowledge of community resources was the best predictor of confidence in speaking with parents/caregivers about autism. Perceived self-efficacy and confidence in speaking with parents/caregivers about autism significantly increased following the MoSAIC autism training. Discussion: Targeted autism training for primary health practitioners is an important first step for early autism identification and initiating conversations with parents/caregivers.

The Sensory Observation Autism Rating Scale (SOAR): Developed using the PROMIS® framework.

Autistic people experience the sensory world differently, impacting behavior. First-hand accounts and group-based research have found that sensory differences impact a range of things including family life, anxiety, participation, and daily living. Early sensory differences are widely reported to be associated with a cascade of developmental difference, suggesting that early autism diagnosis and sensory mapping could enable the provision of supports to facilitate flourishing. However, appropriate measurement tools are not available as all rely on proxy report or are observation measures which include limited modalities or domains and require the administration of stimuli. Therefore, following the gold-standard recommendations for measurement development outlined by the PROMIS® framework, we created the Sensory Observation Autism Rating scale (SOAR). We identified sensory behaviors across all primary domains and modalities through an extensive autism-sensory literature review and from focus groups with autism stakeholders. The initial item bank was then refined by an expert panel and through video coding five-minutes of free play from Autism Diagnostic Observation Schedule assessments of 105 age- and gender-matched autistic and developmentally delayed children (aged 13-36 months; 38 female). An additional 25% of the sample were double coded to investigate interrater reliability. Observational data and expert review supported the reduction of the item bank to 37 items. We propose that the refined SOAR has excellent face and ecological validity, along with interrater reliability (Intraclass correlation = 0.87-0.99). Following further data collection and refinement, SOAR has promise to fully characterize sensory behaviors in autistic children and indicate useful supports.

Continuity of temperament subgroup classifications from infancy to toddlerhood in the context of early autism traits.

Our previous cross-sectional investigation (Chetcuti et al., 2020) showed that infants with autism traits could be divided into distinct subgroups based on temperament. This longitudinal study builds on this existing work by exploring the continuity of temperament subgroup classifications and their associations with behavioral/clinical phenotypic features from infancy to toddlerhood. 103 infants (68% male) showing early signs of autism were referred to the study by community healthcare professionals and seen for assessments when aged around 12-months (Time 1), 18-months (Time 2), and 24-months (Time 3). Latent profile analysis revealed inhibited/low positive, active/negative reactive, and sociable/well-regulated subgroups at each timepoint, and a unique reactive/regulated subgroup at Time 3. Cross-tabulations indicated a significant likelihood of children having a recurrent subgroup classification from one timepoint to the next, and no apparent patterns to the movement of children who did change from one subgroup to another over time. Temperament subgroups were associated with concurrent child social-emotional functioning and autism traits, but unrelated to child age, sex, or developmental level. These findings suggest that temperament subgroup classifications might represent a reliable and very early indicator of autism characteristics and social-emotional functioning among infants/toddlers with autism traits.

Parent-Child Interactions May Help to Explain Relations Between Parent Characteristics and Clinically Observed Child Autistic Behaviours.

The importance of supporting parent-child interactions has been noted in the context of prodromal autism, but little consideration has been given to the possible contributing role of parental characteristics, such as psychological distress. This cross-sectional study tested models in which parent-child interaction variables mediated relations between parent characteristics and child autistic behaviour in a sample of families whose infant demonstrated early signs of autism (N = 103). The findings suggest that associations between parent characteristics (psychological distress; aloofness) and child autistic behaviours may be mediated by the child's inattentiveness or negative affect during interactions. These findings have important implications in developing and implementing interventions in infancy which target the synchrony of parent-child interaction with the goal to support children's social communication development.

Estimated Therapy Costs and Downstream Cost Consequences of iBASIS-Video Interaction to Promote Positive Parenting Intervention vs Usual Care Among Children Displaying Early Behavioral Signs of Autism in Australia.

Importance: The growing global prevalence of autism spectrum disorder (ASD) is associated with increasing costs for support services. Ascertaining the effects of a successful preemptive intervention for infants showing early behavioral signs of autism on human services budgets is highly policy relevant. Objective: To estimate the net cost impact of the iBASIS-Video Interaction to Promote Positive Parenting (iBASIS-VIPP) intervention on the Australian government. Design, Setting, and Participants: Infants (aged 12 months) showing early behavioral indicators of autism were recruited through community settings into the multicenter Australian iBASIS-VIPP randomized clinical trial (RCT), a 5- to 6-month preemptive parent-mediated intervention, between June 9, 2016, and March 30, 2018, and were followed up for 18 months to age 3 years. This economic evaluation, including cost analysis (intervention and cost consequences) and cost-effectiveness analyses of iBASIS-VIPP compared with usual care (treatment as usual [TAU]), modeled outcomes observed at age 3 through to 12 years (13th birthday) and was conducted from April 1, 2021, to January 30, 2023. Data analysis was conducted from July 1, 2021, to January 29, 2023. Exposures: iBASIS-VIPP intervention. Main Outcomes and Measures: To project the diagnostic trajectory and associated disability support costs drawing on the Australian National Disability Insurance Scheme (NDIS), the main outcome was the differential treatment cost of iBASIS-VIPP plus TAU vs TAU and disability-related government costs modeled to age 12 years, using a clinical diagnosis of ASD and developmental delay (with autism traits) at 3 years. Costs were calculated in Australian dollars and converted to US dollars. Economic performance was measured through the following: (1) differential net present value (NPV) cost (iBASIS-VIPP less TAU), (2) investment return (dollars saved for each dollar invested, taking a third-party payer perspective), (3) break-even age when treatment cost was offset by downstream cost savings, and (4) cost-effectiveness in terms of the differential treatment cost per differential ASD diagnosis at age 3 years. Alternate values of key parameters were modeled in 1-way and probabilistic sensitivity analysis, the latter identifying the likelihood of an NPV cost savings. Results: Of the 103 infants enrolled in the iBASIS-VIPP RCT, 70 (68.0%) were boys. Follow-up data at age 3 years were available for 89 children who received TAU (44 [49.4%]) or iBASIS-VIPP (45 [50.6%]) and were included in this analysis. The estimated mean differential treatment cost was A $5131 (US $3607) per child for iBASIS-VIPP less TAU. The best estimate of NPV cost savings was A $10 695 (US $7519) per child (discounted at 3% per annum). For each dollar invested in treatment, a savings of A $3.08 (US $3.08) was estimated; the break-even cost occurred at age 5.3 years (approximately 4 years after intervention delivery). The mean differential treatment cost per lower incident case of ASD was A $37 181 (US $26 138). We estimated that there was an 88.9% chance that iBASIS-VIPP would deliver a cost savings for the NDIS, the dominant third-party payer. Conclusions and Relevance: The results of this study suggest that iBASIS-VIPP represents a likely good-value societal investment for supporting neurodivergent children. The estimated net cost savings were considered conservative, as they covered only third-party payer costs incurred by the NDIS and outcomes were modeled to just age 12 years. These findings further suggest that preemptive interventions may be a feasible, effective, and efficient new clinical pathway for ASD, reducing disability and the costs of support services. Long-term follow-up of children receiving preemptive intervention is needed to confirm the modeled results.

General practitioners' perspectives regarding early developmental surveillance for autism within the australian primary healthcare setting: a qualitative study.

BACKGROUND: Significant challenges remain in the early identification of child developmental disabilities in the community. Implementing supports and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental disabilities, including autism. As part of a cluster randomised controlled trial, this study seeks to examine and compare the perspectives and experiences of Australian general practitioners (GPs) in relation to a digital developmental surveillance program for autism and usual care pathway, in general practice clinics. METHODS: A qualitative research methodology with semi-structured interviews and thematic inductive analysis underpinned by grounded theory was utilised. All GPs from South Western Sydney (NSW) and Melbourne (Victoria) who participated in the main program ("GP Surveillance for Autism") were invited to the interview. GPs who provided consent were interviewed either over online or in-person meeting. Interviews were audio-recorded, transcribed, and coded using NVivo12 software. Inductive interpretive approach was adopted and data were analysed thematically. RESULTS: Twenty-three GPs across the two sites (NSW: n = 11; Victoria: n = 12) agreed to be interviewed; data saturation had reached following this number of participants. Inductive thematic coding and analysis yielded eight major themes and highlighted common enablers such as the role of GPs in early identification and subsequent supports, enhanced communication between clinicians/professionals, relationship-building with patients, and having standardised screening tools. Specific facilitators to the feasibility and acceptability of a digital screening program for the early identification of developmental disabilities, including the early signs of autism, and encouraging research and education for GPs. However, several practical and socioeconomic barriers were identified, in addition to limited knowledge and uptake of child developmental screening tools as well as COVID-19 lockdown impacts. Common and specific recommendations involve supporting GPs in developmental/paediatrics training, streamlined screening process, and funding and resources in the primary healthcare services. CONCLUSIONS: The study highlighted the need for practice and policy changes, including further training of GPs alongside sufficient time to complete developmental checks and appropriate financial remuneration through a Medicare billing item. Further research is needed on implementation and scale up of a national surveillance program for early identification of developmental disabilities, including autism.

Leisure, employment, community participation and quality of life in caregivers of autistic children: A scoping review.

LAY ABSTRACT: We searched a wide range of academic journals for published information on the participation levels of caregivers of autistic children in activities relating to leisure, social, community and employment contexts, and the impact that participation may have on caregiver quality of life. Overall, we found that the impact of parenting an autistic child is broad with caregivers often prioritising their child's needs over their own, particularly in occupational participation, which impacts their quality of life. Findings also highlighted a need for further research to investigate the experience of caregivers, and the relationship between participation and quality of life in caregivers of autistic children, as the results can inform the development of better supports for them.

Changes in Knowledge on the Signs of Autism in Young Children (11-30 Months) among Female Community Health Volunteers in Nepal.

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.

Brief Report: Training New Zealand Well Child/Tamariki Ora Nurses on Early Autism Signs Using the Social Attention and Communication Surveillance-Revised.

Universal developmental surveillance is considered best practice for early identification of autism. We analysed data from 175 New Zealand Well-Child/Tamariki Ora nurses who attended a 1-day training in developmental surveillance for autism using the social attention and communication surveillance-revised (SACS-R) tool. We used a survey to measure nurses' knowledge of typical development, knowledge of early signs of autism, general autism knowledge, and confidence in identifying and discussing early signs, prior to the workshop, after the workshop, and at follow-up. We measured perceived acceptability of the SACS-R after the workshop and at follow-up. Nurses showed improvements on all measures from pre-workshop to post-workshop and pre-workshop to follow-up. Implementation of the SACS-R across different contexts appears feasible and acceptable.

Diagnostic Accuracy of the Social Attention and Communication Surveillance-Revised With Preschool Tool for Early Autism Detection in Very Young Children.

Importance: Early identification of children on the autism spectrum is crucial to facilitate access to early supports and services for children and families. The need for improved early autism identification tools is highlighted by the lack of sufficient diagnostic accuracy in current tools. Objectives: To examine the diagnostic accuracy of the Social Attention and Communication Surveillance-Revised (SACS-R) and SACS-Preschool (SACS-PR) tools when used with a large, community-based, convenience sample and identify the prevalence of autism in this sample. Design, Setting, and Participants: This diagnostic accuracy study was conducted in Melbourne, Australia, training maternal and child health nurses who monitored 13 511 children aged 11 to 42 months using the SACS-R and SACS-PR during their routine consultations (June 1, 2013, to July 31, 2018). Children identified as being at high likelihood for autism (12-24 months of age: n = 327; 42 months of age: n = 168) and at low likelihood for autism plus concerns (42 months of age: n = 28) were referred by their maternal and child health nurse for diagnostic assessment by the study team. Data analysis was performed from April 13, 2020, to November 29, 2021. Exposures: Children were monitored with SACS-R and SACS-PR at 12, 18, 24, and 42 months of age. Main Outcomes and Measures: Diagnostic accuracy of the SACS-R and SACS-PR was determined by comparing children's likelihood for autism with their diagnostic outcome using clinical judgment based on standard autism assessments (Autism Diagnostic Observation Schedule-Second Edition and Autism Diagnostic Interview-Revised). Results: A total of 13 511 children (female: 6494 [48.1%]; male: 7017 [51.9%]) were monitored at least once with the SACS-R at their 12-, 18-, and 24-month-old routine maternal and child health consultations (mean [SD] age, 12.3 [0.59] months at 12 months; 18.3 [0.74] months at 18 months; 24.6 [1.12] months at 24 months) and followed up at their 42-month maternal and child health consultation (mean [SD] age, 44.0 [2.74] months) with SACS-PR (8419 [62.3%]). At 12 to 24 months, SACS-R showed high diagnostic accuracy, with 83% positive predictive value (95% CI, 0.77-0.87) and 99% estimated negative predictive value (95% CI, 0.01-0.02). Specificity (99.6% [95% CI, 0.99-1.00]) was high, with modest sensitivity (62% [95% CI, 0.57-0.66]). When the SACS-PR 42-month assessment was added, estimated sensitivity increased to 96% (95% CI, 0.94-0.98). Autism prevalence was 2.0% (1 in 50) between 11 and 30 months of age and 3.3% (1 in 31) between 11 and 42 months of age. Conclusions and Relevance: The SACS-R with SACS-PR (SACS-R+PR) had high diagnostic accuracy for the identification of autism in a community-based sample of infants, toddlers, and preschoolers, indicating the utility of early autism developmental surveillance from infancy to the preschool period rather than 1-time screening. Its greater accuracy compared with psychometrics of commonly used autism screening tools when used in community-based samples suggests that the SACS-R+PR can be used universally for the early identification of autism.