Cheryl Dissanayake

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.

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 Our study comprehensively examined and compared the psychometric properties of the unpublished 27‐item AASPIRE Autistic Burnout Measure (ABM), and personal and work scales of the Copenhagen Burnout Inventory (CBI) to evaluate their efficacy as screening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.

There are inequities in engagement with established early childhood developmental surveillance programs, eclipsing disadvantaged families. The current study sought to address this by dovetailing developmental surveillance with immunization visits and other opportunistic contacts with children at general practices). While 53 General Practices were recruited, significant COVID-19 disruptions resulted in only 81 children being screened (both parent-administered and GP completed). Of the 81 children, 11 screened positive and all of them along with 5% of screen negatives (i.e. 4 children) received clinician-administered reference-standard assessment for autism and developmental delay (DD) using Autism Diagnostic Observation Schedule (ADOS), Autism Diagnostic Interview Schedule –Revised (ADI-R), and Mullen Scales of Early Learning (MSEL). All children found by reference-standard assessment to have probable autism and/or DD had screened positive during the screening process, and 90.9% of children who screened positive were found by reference-standard assessment to have probable DD or autism. The findings provide early evidence for the feasibility and usefulness of parent completed and GP administered developmental measures during opportunistic contacts with GPs as a promising method to facilitate early identification of DD or autism.

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.

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.

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.

Many autistic children require support to meet their learning needs. Given the heterogeneity within the autism spectrum it is plausible that different types of support might be better suited to different children. However, knowledge on what interventions work best for which children is limited. We examined the outcomes of autistic preschool-aged children receiving one of two community early intervention approaches. Our main objective was to understand which baseline child characteristics might be associated with the degree of individual response to intervention—whether prognostically (i.e., irrespective of intervention received) or predictively (i.e., specifically in the context of one or other EI approach). Participants comprised two matched groups of preschool-aged autistic children receiving either Group-based Early Start Denver Model (G-ESDM; n = 42) delivered in a 1:3–4 staff:child ratio or an Early Intensive Behavioural Intervention (EIBI; n = 40) delivered in combination of 1:1 and 1:2 staff:child ratio. Over an approximate one-year follow-up period, children in both groups made significant gains in Developmental Quotient (DQ) scores, and trend-level gains in adaptive behaviour composite scores. Higher attention to a playful adult measured via an eye-tracking task was prognostically indicative of better verbal DQ and adaptive behaviour outcomes for the cohort overall. Moderation analyses indicated a single predictive effect—of pre-program sustained attention for subsequent NVDQ outcomes specific to those children receiving G-ESDM. These findings suggest that fine-grained measures of learning skills offer promise towards the selection and tailoring of intervention approaches to meet individual children’s learning needs.

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.

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 _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 (~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 (ω=.930, bias-corrected and accelerated 95% confidence interval (BCa 95% CI) [.90, .95]) demonstrated good convergent validity, correlating significantly with existing suicide specific (ρ=.442–.698, p<.001) and well-being measures (ρ=.325.–.505, p≤.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, β = 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 ⩾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. Lay Autistic people may be at higher risk of suicidal behavior than people in the general population. Suicidal behavior may include thinking about suicide or attempting to end one’s own life by suicide. It is important to identify autistic people who may be thinking about suicide. People who are at risk of suicidal behavior can be identified by asking questions about whether they have been thinking about suicide. A specially designed questionnaire, or screening instrument, can help someone ask the best questions to find out if someone has been thinking about suicide. This information can help to identify supports to be put in place to prevent suicidal behavior, such as a suicide attempt. However, autistic people may interpret questions differently than non-autistic people. It is important to use screening tools that have been designed with, and for autistic people. In this study, we examined the Suicidal Ideation Attributes Scale (SIDAS). The SIDAS is an existing tool that was developed to screen for suicidal thinking in the general population. We modified SIDAS for use with autistic adults. We involved autistic people in the process of modifying SIDAS. We called the modified instrument the SIDAS-M. The results of our study showed SIDAS-M may be useful for screening for suicidal thinking in autistic adults who do not have an intellectual disability.

This study examined the factors associated with social‐communicative outcomes for children on the autism spectrum receiving early intervention in inclusive versus specialised early childhood education programmes. Fifty‐eight preschool‐aged children randomly assigned to receive the Group‐Early Start Denver Model (G‐ESDM) in either inclusive or specialised (i.e., autism‐specific) classrooms across one calendar year showed similar outcomes at group mean‐level across measures of communication and social behaviour. We examined factors moderating outcomes across settings. Novel moderation analyses revealed that higher baseline social interest and nonverbal cognitive skills were associated with increased social communication gains for children in the inclusive classrooms, but not for those in specialised settings. Children who spend more time paying attention to people and have higher cognitive skills might benefit from receiving early intervention in inclusive settings, whilst these factors might be less relevant for children educated in specialised settings.