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While theory supports bidirectional effects between caregiver sensitivity and language use, and infant language acquisition-both caregiver-to-infant and also infant-to-caregiver effects-empirical research has chiefly explored the former unidirectional path. In the context of infants showing early signs of autism, we investigated prospective bidirectional associations with 6-min free-play interaction samples collected for 103 caregivers and their infants (mean age 12-months; and followed up 6-months later). We anticipated that measures of caregiver sensitivity/language input and infant language would show within-domain temporal stability/continuity, but also that there would be predictive associations from earlier caregiver input to subsequent child language, and vice versa. Caregiver sensitive responsiveness (from the Manchester Assessment of Caregiver-Infant interaction [MACI]) predicted subsequent infant word tokens (i.e., amount of language, coded following the Systematic Analysis of Language Transcripts [SALT]). Further, earlier infant Mean Length of Utterance (MLU; reflecting language complexity, also derived from SALT coding) predicted later caregiver MLU, even when controlling for variability in infant ages and clear within-domain temporal stability/continuity in key measures (i.e., caregiver sensitive responsiveness and infant word tokens; and infant and caregiver MLU). These data add empirical support to theorization on how caregiver input can be both supportive of, and potentially influenced by, infant capacities, when infants have social-communication differences and/or communication/language delays suggestive of possible emerging autism.

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.

Early supports to enhance social development in children with autism are widely promoted. While oxytocin has a crucial role in mammalian social development, its potential role as a medication to enhance social development in humans remains unclear. We investigated the efficacy, tolerability, and safety of intranasal oxytocin in young children with autism using a double-blind, randomized, placebo-controlled, clinical trial, following a placebo lead-in phase. A total of 87 children (aged between 3 and 12 years) with autism received 16 International Units (IU) of oxytocin (n = 45) or placebo (n = 42) nasal spray, morning and night (32 IU per day) for twelve weeks, following a 3-week placebo lead-in phase. Overall, there was no effect of oxytocin treatment over time on the caregiver-rated Social Responsiveness Scale (SRS-2) (p = 0.686). However, a significant interaction with age (p = 0.028) showed that for younger children, aged 3–5 years, there was some indication of a treatment effect. Younger children who received oxytocin showed improvement on caregiver-rated social responsiveness ( SRS-2). There was no other evidence of benefit in the sample as a whole, or in the younger age group, on the clinician-rated Clinical Global Improvement Scale (CGI-S), or any secondary measure. Importantly, placebo effects in the lead-in phase were evident and there was support for washout of the placebo response in the randomised phase. Oxytocin was well tolerated, with more adverse side effects reported in the placebo group. This study suggests the need for further clinical trials to test the benefits of oxytocin treatment in younger populations with autism.Trial registration www.anzctr.org.au (ACTRN12617000441314).

Objectives The current study used a transdiagnostic approach to explore experiences of consumers and professionals on how the process of assessing and diagnosing neurodevelopmental conditions can be improved. Methods Individuals with personal and/or professional experience of this clinical pathway were invited to complete an online survey. A convenience sample of 117 Australian participants provided qualitative data describing how to improve this clinical pathway, including 71 consumers and 53 professionals (seven participants held both roles). Descriptive statistics were used to summarize the characteristics of the participants and two researchers analyzed the qualitative responses using a template approach. Results Participants described a five-stage “journey” spanning before, during and after diagnosis of a neurodevelopmental condition. They progressed through “searching” for an explanation, “waiting” for the diagnostic evaluation, “investigating” the signs and symptoms, “knowing” that their child has a neurodevelopmental condition and “accessing” support. Participants also suggested nine key improvements to this process that were named “awareness” through professional training and empathy, “clearer pathways” through professional checklists and plans, “acceptable timeframes” through reduced local waitlists, “more holistic” through assessment and supports, “more collaboration” through communication with key parties, “stability and consistency” through continuous and coordinated services, “generic community programs” through early needs-based support, “understanding” through meaningful diagnostic disclosure and “addressing their needs” through further targeted supports. Conclusions The findings from this study provide a foundation for future work to improve the diagnostic journey for neurodevelopmental conditions through a collaborative effort between consumers, professionals, researchers and policy makers. These findings highlight the importance of a transdiagnostic and comprehensive clinical pathway that spans the entire journey, where supports are readily available to consumers before, during and after diagnosis. Further research is required to explore the experience of consumers and professionals from more diverse backgrounds, as a limitation of this study was that almost all participants were females and very few identified as belonging to a specific cultural group.

Objectives In the Australian disability context, the assessment of children with neurodevelopmental conditions’ functioning (across all domains) is of increasing importance, particularly since the introduction of the National Disability Insurance Scheme. Currently, there is wide variability across assessment of functioning practices, including the choice and use of published tools for assessment. Therefore, we sought to identify the tool characteristics and other factors clinicians consider when selecting an assessment of functioning tool for use with children with neurodevelopmental conditions. Methods Using workshops and an online survey, 45 Australian medical and allied health clinicians (predominantly occupational therapists and psychologists) identified what they thought was ‘most important’ when selecting assessment of functioning tools for children with neurodevelopmental conditions. These qualitative responses were analysed using template analysis. Results Five main themes relating to a tool’s characteristics were identified: easy, feasible, fair, holistic, and useful. Within these themes, considerations relating to the measure itself, the clinician administering the tool and the individual being assessed were identified. Conclusions Characteristics raised by the clinicians align with frameworks described in the literature, pointing to the potential utility of these frameworks in guiding the development and evaluation of future assessment of functioning tools.

Objectives Children who have an older sibling diagnosed with autism have an increased likelihood of being diagnosed with autism or developing broader developmental difficulties. This study explored perinatal experiences of parents of a child diagnosed with autism, spanning pre-conception until the subsequent child’s early developmental period. Methods Qualitative interviews were conducted with ten parents of a child diagnosed with autism, and ten parents of a child with no neurodevelopmental diagnosis, each of whom had gone on to have a subsequent child. Thematic analysis occurred concurrently with data collection and involved comparisons between the two samples. Results Four themes were identified in relation to the perinatal period of a subsequent child following the autism diagnosis of an older child. These were parental experiences of “apprehension”, “adjustment”, and “adaptation”, underpinned by the “importance of support”. Many experiences of parenting were similar between the two groups, with comparison between the groups identifying the role of autism in an increased focus, concern, and hypervigilance to their child’s development. Conclusions Having a child diagnosed with autism intensifies some of the common experiences of parenting and infancy. The challenges identified by parents throughout the experience of parenting an infant after having a child diagnosed with autism indicate that the development of supports could help empower families in this situation going forwards.

The developmental origins of handedness remain elusive, though very early emergence suggests individual differences manifesting in utero could play an important role. Prenatal testosterone and Vitamin D exposure are considered, yet findings and interpretations remain equivocal. We examined n = 767 offspring from a population-based pregnancy cohort (The Raine Study) for whom early biological data and childhood/adolescent handedness data were available. We tested whether 18-week maternal circulatory Vitamin D (25[OH]D), and testosterone and estradiol from umbilical cord blood sampled at birth predicted variance in direction of hand preference (right/left), along with right- and left-hand speed, and the strength and direction of relative hand skill as measured by a finger-tapping task completed at 10 (Y10) and/or 16 (Y16) years. Although higher concentrations of Vitamin D predicted more leftward and less lateralized (regardless of direction) relative hand skill profiles, taken as a whole, statistically significant findings typically did not replicate across time-point (Y10/Y16) or sex (male/female) and were rarely detected across different (bivariate/multivariate) levels of analysis. Considering the number of statistical tests and generally inconsistent findings, our results suggest that perinatal testosterone and estradiol contribute minimally, if at all, to subsequent variance in handedness. Vitamin D, however, may be of interest in future studies.

Sensory modulation symptoms form a diagnostic criterion for autism spectrum disorder and are associated with significant daily functional limitations. Utilizing caregiver report on Short Sensory Profile-2 (SSP-2) for 919 autistic children (3-14.11 years), we examined the expression of sensory modulation symptoms by age and sex and investigated the existence of specific sensory modulation subtypes. Sensory modulation symptoms appeared to peak in frequency during middle childhood, particularly in sensory sensitivity and avoidance. Symptoms associated with sensory hypo-reactivity and seeking tended not differ between age cohorts. Males and females demonstrated similar overall sensory modulation profiles, however, females showed elevated symptoms relating to sensory sensitivity. Model-based cluster analysis revealed five interpretable sensory modulation subtypes which related to symptom severity (low, mid-range, high). Subtypes demonstrating mid-range symptom severity differed in focus on sensory hyper-reactivity or seeking symptoms. The findings of this study report for the first time that age-related differences in sensory modulation symptoms may be associated with sensory hyper-reactivity only. The subtyping results also suggest that sensory modulation symptom severity is a reliable means of classifying variance within autistic children, however, consideration of differences in the behavioral strategies employed by individuals to manage sensory modulation symptoms may inform tailored supportive strategies. LAY SUMMARY: We studied sensory symptoms such as over-responding, under-responding and sensation seeking behaviors in 919 autistic children and adolescents. We found that 6-12-year-olds and females displayed the most sensory over-responding symptoms. Autistic children could be grouped into mild, moderate, and severe levels of sensory symptoms, however, children differed in the type of strategies used to cope with their sensory symptoms meaning that they may require different intervention approaches.

Children diagnosed with autism spectrum disorder may be at higher likelihood of experiencing poorer oral health and difficulties accessing dental health care. However, identifying which children on the autism spectrum may be more vulnerable to experiencing dental care difficulties is still unknown. This study investigated parental reports of oral health and dental service needs of children diagnosed with autism and explored relationships with clinical phenotypes.Participants (n = 140) were parents of children on the autism spectrum who had participated in a large national biobank study, the Australian Autism Biobank, invited to complete additional surveys about oral health, service use, and barriers to care. One third of parents reported their child's oral health was worse than other children the same age, with 26% reporting untreated dental problems. A third of children were reported to have undergone general anaesthesia at least once for dental procedures. Children who had undergone general anaesthesia were more likely to have intellectual disability and greater functional difficulties. Parents of children with greater functional limitations and sensory challenges reported experiencing barriers to accessing dental care more frequently.These results have important implications for paediatric dentists working with children diagnosed with autism with co-occurring intellectual, functional, and sensory challenges. Findings may inform the development of more personalised autism-specific supports.

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.

Autism and attention-deficit/hyperactivity disorder (ADHD) often co-occur. This survey of 288 New Zealand parents of children diagnosed with autism (n = 111), ADHD (n = 93), or both conditions (n = 84), examined the relations between age of diagnosis and early atypical development, the age specialist consultation was needed and types of specialists seen. Co-occurring autism and ADHD was associated with an earlier ADHD diagnosis and a later autism diagnosis. Parents of children with both diagnoses reported less atypical development in language and social behaviours compared to parents of children of autism, and this co-occurring group also experienced longer wait times to diagnosis, and saw more types of specialists prior to a diagnosis, than those with autism.

Refereed/Peer-reviewed Natural Language Sampling (NLS) offers clear potential for communication and language assessment, where other data might be difficult to interpret. We leveraged existing primary data for 18-month-olds showing early signs of autism, to examine the reliability and concurrent construct validity of NLS-derived measures coded from video—of child language, parent linguistic input, and dyadic balance of communicative interaction—against standardised assessment scores. Using Systematic Analysis of Language Transcripts (SALT) software and coding conventions, masked coders achieved good-to-excellent inter-rater agreement across all measures. Associations across concurrent measures of analogous constructs suggested strong validity of NLS applied to 6-min video clips. NLS offers benefits of feasibility and adaptability for validly quantifying emerging skills, and potential for standardisation for clinical use and rigorous research design.

Funding: Royal Society - UF150663, RGF\EA\180141; Wellcome Trust - 217065/Z/19/Z; H2020 European Research Council - 694189; NWO - 451-15-017; National Health and Medical Research Council - 1173896; Canadian Institute for Health Research - MOP-133440. Handedness has been studied for association with language-related disorders because of its link with language hemispheric dominance. No clear pattern has emerged, possibly because of small samples, publication bias, and heterogeneous criteria across studies. Non-right-handedness (NRH) frequency was assessed in N = 2503 cases with reading and/or language impairment and N = 4316 sex-matched controls identified from 10 distinct cohorts (age range 6–19 years old; European ethnicity) using a priori set criteria. A meta-analysis (Ncases = 1994) showed elevated NRH % in individuals with language/reading impairment compared with controls (OR = 1.21, CI = 1.06–1.39, p = .01). The association between reading/language impairments and NRH could result from shared pathways underlying brain lateralization, handedness, and cognitive functions. Publisher PDF

Despite their high prevalence and clinical importance in autism, unusual and restricted interests remain under-researched and poorly understood. This study aimed to characterize the frequency and type of interests in autism by coding caregivers’ open-ended responses in a sample of 237 autistic children and adolescents ( Mage = 8.27 years, SDage = 4.07; range: 2.08–18.25 years). It further aimed to explore the effects of age, sex, cognitive functioning and social and communication deficits on the number and type of interests. We found that 75% of autistic youth had at least one interest and that 50% of those children showed two or more different interests. The most frequent interests were sensory-based (43%), with a majority of these interests relating to the visual modality. Interest within vehicles/transportation, fictional characters, television/digital versatile disk/movies, computers, and video games, constructive, mechanical objects, animals and plants, and attachment to specific objects were also prevalent. Logistic regression showed that being male, having a co-occurring intellectual disability and having more severe social and communication impairments were associated with a higher probability of having one or more restricted interests. Sex was significantly associated with the type (χ2 = 37.52, Phi = 0.37, p = 0.021) of restricted interests, with females showing a significantly higher percentage of creative interests and males significantly higher percentage of interest in characters, vehicles/transportation, computers/video games, mechanical objects and constructive interests. Theoretical and measurement implications are discussed. Lay abstract Despite being highly prevalent among people with autism, restricted and unusual interests remain under-researched and poorly understood. This article confirms that restricted interests are very frequent and varied among children and adolescents with autism. It also further extends current knowledge in this area by characterizing the relationship between the presence, number, and type of restricted interests with chronological age, sex, cognitive functioning, and social and communication symptoms.

This study aimed to explore the rates of motor difficulties in children from the Australian Autism Biobank, and how early motor concerns impacted on children functionally. Children with autism aged 2–7 years, including 441 with a Vineland Adaptive Behavior Scale (VABS-II) motor subscale and 385 with a Mullen Scales of Early Learning (MSEL) fine motor subscale were included (n total = 514; 80% male). Approximately 60% of children on the MSEL and ~ 25% on the VABS-II had clinically significant motor impairments. More children with delayed sitting and walking motor milestones had early childhood parent reported motor difficulties (p

Greater facial asymmetry has been consistently found in children with autism spectrum disorder (ASD) relative to children without ASD. There is substantial evidence that both facial structure and the recurrence of ASD diagnosis are highly heritable within a nuclear family. Furthermore, sub-clinical levels of autistic-like behavioural characteristics have also been reported in first-degree relatives of individuals with ASD, commonly known as the 'broad autism phenotype'. Therefore, the aim of the current study was to examine whether a broad autism phenotype expresses as facial asymmetry among 192 biological parents of autistic individuals (134 mothers) compared to those of 163 age-matched adults without a family history of ASD (113 females). Using dense surface-modelling techniques on three dimensional facial images, we found evidence for greater facial asymmetry in parents of autistic individuals compared to age-matched adults in the comparison group (p = 0.046, d = 0.21 [0.002, 0.42]). Considering previous findings and the current results, we conclude that facial asymmetry expressed in the facial morphology of autistic children may be related to heritability factors. LAY ABSTRACT: In a previous study, we showed that autistic children presented with greater facial asymmetry than non-autistic children. In the current study, we examined the amount of facial asymmetry shown on three-dimensional facial images of 192 parents of autistic children compared to a control group consisting of 163 similarly aged adults with no known history of autism. Although parents did show greater levels of facial asymmetry than those in the control group, this effect is statistically small. We concluded that the facial asymmetry previously found in autistic children may be related to genetic factors.

Background Although autism spectrum disorders (ASD) are among the most heritable of all neuropsychiatric syndromes, most affected children are born to unaffected parents. Recently, we reported an average increase of 3–5% over general population risk of ASD among offspring of adults who have first-degree relatives with ASD in a large epidemiologic family sample. A next essential step is to investigate whether there are measurable characteristics of individual parents placing them at higher or lower recurrence risk, as this information could allow more personalized genetic counseling. Methods We assembled what is to our knowledge the largest collection of data on the ability of four measurable characteristics of unaffected prospective parents to specify risk for autism among their offspring: (1) sub clinical autistic trait burden, (2) parental history of a sibling with ASD, (3) transmitted autosomal molecular genetic abnormalities, and (4) parental age. Leveraging phenotypic and genetic data in curated family cohorts, we evaluate the respective associations between these factors and child outcome when autism is present in the family in the parental generation. Results All four characteristics were associated with elevation in offspring risk; however, the magnitude of their predictive power—with the exception of isolated rare inherited pathogenic variants —does not yet reach a threshold that would typically be considered actionable for reproductive decision-making. Conclusions Individual specification of risk to offspring of adults in ASD-affected families is not straightforwardly improved by ascertainment of parental phenotype, and it is not yet clear whether genomic screening of prospective parents in families affected by idiopathic ASD is warranted as a clinical standard. Systematic screening of affected family members for heritable pathogenic variants, including rare sex-linked mutations, will identify a subset of families with substantially elevated transmission risk. Polygenic risk scores are only weakly predictive at this time but steadily improving and ultimately may enable more robust prediction either singly or when combined with the risk variables examined in this study.

With increasing demands for health, disability and education services, innovative approaches can help distribute limited resources according to need. Despite an increased focus on support needs within the clinical pathway and policy landscape, the body of research knowledge on this topic is at a relatively early stage. However, there appears to be a sense of unmet support needs and dissatisfaction with the provision of required support following an autism diagnosis amongst caregivers of young people on the spectrum. The primary aim of this study was to explore the perceived support needs of Australian school-aged young people on the spectrum and their caregiver(s). This was achieved using a phenomenographic Support Needs Interview conducted by occupational therapists during home-visits with caregivers of 68 young people on the spectrum (5–17 years). Qualitative data analysis resulted in two hierarchical outcome spaces, one each for young people and their caregivers, indicating interacting levels of support need areas that could be addressed through a combination of suggested supports. These support needs and suggested supports align with almost all chapters within the Body Functions, Activities and Participation and Environmental Factors domains of the International Classification of Functioning, Disability and Health. The overall goals of meeting these complex and interacting support needs were for the young people to optimize their functioning to reach their potential and for caregivers to ensure the sustainability of their caregiving capacity. A series of recommendations for support services, researchers and policy makers have been made to position support needs as central during the assessment, support and evaluation phases.

The measurement of quality of life (QOL) in children with intellectual disability often relies upon proxy report via caregivers. The current study investigated whether caregiver psychological distress mediates or moderates the effects of impairment on their ratings of QOL in children with intellectual disability. Caregivers of 447 children with an intellectual disability reported their child’s day-to-day functioning, their own psychological distress using the Kessler Psychological Distress Scale, and the Quality of Life Inventory-Disability (QI-Disability), a measure of QOL for proxy report of a child’s observable behaviours that indicate quality of life. Linear regression was used to assess the effects of the child’s functional abilities on their QI-Disability score and causal mediation analysis to estimate the extent to which these effects were mediated by caregivers’ psychological distress. A minority of caregivers (n = 121, 27.1%) reported no psychological distress. Lower day-to-day functional abilities, such as being fully dependent on others to manage their personal needs were associated with lower total QOL scores. There was no significant mediation effect of caregiver psychological distress on the association between child functioning and total QOL scores. Moderation analyses revealed small and largely nonsignificant interaction coefficients, indicating that caregiver psychological distress did not influence the strength of the relationship between child functioning and total QOL scores. Caregiver psychological distress did not mediate or moderate the relationship between the level of functional abilities and QOL in children with intellectual disability. QI-Disability measured observable child behaviours which may reduce the influence of caregiver factors on the accurate measure of QOL for children with intellectual disability.

The diagnostic experiences of autistic adults in New Zealand have not been investigated and little is known globally about autistic adults’ satisfaction with the autism diagnostic process. This study describes the diagnostic experiences of 70 autistic adults living in New Zealand and explores how these experiences are related to satisfaction during three stages of the diagnostic process. The results show that autistic adults were reasonably satisfied with the early query and diagnostic assessment stages, but were dissatisfied with the post-diagnostic support stage, with significant unmet needs. Dissatisfaction during the post-diagnostic support stage was also related to satisfaction during previous stages and poor coordination of supports. Suggestions are made on how to improve the autism diagnostic pathway for autistic adults in New Zealand.

ImportanceThe 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.ObjectiveTo estimate the net cost impact of the iBASIS–Video Interaction to Promote Positive Parenting (iBASIS-VIPP) intervention on the Australian government.Design, Setting, and ParticipantsInfants (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.ExposuresiBASIS-VIPP intervention.Main Outcomes and MeasuresTo 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.ResultsOf 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 RelevanceThe 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.

Background The aim of this study was to understand the challenges experienced by families obtaining a diagnosis and therapy for developmental coordination disorder (DCD). Methods Parents of 435 children aged 4-18 years with persistent motor difficulties consistent with a diagnosis of DCD completed an online survey. Diagnostic timeline and diagnostic label/s received were examined, along with therapies accessed. Results There was inconsistent diagnostic terminology (nine separate terms) with more children diagnosed with dyspraxia (64.7%) than DCD (48.8%). Even though most parents (87.0%) reported that receiving a diagnosis was helpful, children did not receive a diagnosis until years after seeking help (mean 2.8 ± 2.3 years). Many children were diagnosed with at least one co-occurring neurodevelopmental, language or learning disorder (70.0%). Almost all families had accessed therapy for their child's movement difficulties (93.9%), but more than half did not have access to funding to support therapy costs (57.8%) and reported that the costs caused financial strain (52.6%). Two out of every three families reported that they did not feel the current level of therapy was sufficient. Conclusions This critical advocacy research highlights inconsistent and incorrect terminology and the challenges families experience in obtaining a diagnosis and adequate access to therapy for their child's movement difficulties. Impact This is the first comprehensive study to examine the challenges families experience gaining a diagnosis and therapy for their child with DCD. Families regularly experienced prolonged diagnosis; 45% waited between 2 and 4 years. There is no clear diagnostic pathway, with children more likely to be diagnosed with dyspraxia than the correct clinical diagnosis of DCD. More extensive implementation of the diagnostic guidelines into clinical practice is needed.

Objectives Developmental theory and previous studies support the potential value of prodromal interventions for infants at elevated likelihood of developing autism. Past research has supported the efficacy of parent-mediated prodromal therapies with infants from as early as 7 months. We outline the rationale for implementing interventions following this model from even earlier in development and report on the feasibility of a novel intervention developed following this model of parent-mediated infant interventions. Methods We report a feasibility study (n = 13) of a parent-mediated, video-aided intervention, beginning during pregnancy, focussed on parent-infant interactions. The study evaluated the feasibility of this intervention initially with a general population sample. Feasibility was assessed across four domains (acceptability, implementation, practicality and integration) using self-report questionnaire, semi-structured interviews with parents and therapists, attendance and assessment completion. Results Feasibility assessment shows that the intervention was acceptable, with all participants reporting that they had benefited from the program, with perceived positive benefits to their understanding of and communication with their infant, and that they had integrated program teachings into everyday life. The intervention was implemented as planned with 100% attendance for the core sessions. Changes to minimise the number of antenatal sessions was suggested to improve practicality. Conclusions This study found initial feasibility for this intervention in a general population sample. This suggests parent-mediated video feedback interventions are a promising format to be implemented within the perinatal developmental time period.

Abstract Early identification and intervention are recognised as important elements of the clinical pathway for autism spectrum disorder (ASD). Children with ASD and attention deficit hyperactivity disorder (ADHD) may be diagnosed at a different age than children who only have one of these diagnoses. This systematic review aimed to identify the age at which children were diagnosed with both ASD and ADHD. Of the 9552 articles screened, 12 were included in the review. The findings suggest that ASD is typically diagnosed later when ADHD is present, and ADHD is typically diagnosed earlier when ASD is present. Further research is needed to understand the factors impacting a delayed ASD diagnosis and an earlier ADHD diagnosis when the two conditions co-occur.

Often included within ‘high-risk sibling’ studies, the Autism Observation Scale for Infants (AOSI) has only one independent replication study and no evaluation with community-ascertained cohorts. We administered the AOSI and established clinical measures with 103 infants (68% male) at ‘high autism likelihood’ on the Social Attention and Communication Surveillance - Revised (SACS-R) tool, at 9–14 months of age and again 6 months later. AOSI Total scores showed adequate internal consistency and strong inter-rater agreement (live- or video-coded) and were approximately normally distributed at each visit. Modest significant associations presented between Time 1 AOSI scores and concurrent developmental/adaptive skills measures. Concurrent associations were stronger at Time 2, particularly between AOSI Total and Autism Diagnostic Observation Schedule (ADOS) Social Affect scores. AOSI scores were only moderately associated across Time 1 and 2 assessments, as were Time 1 AOSI with Time 2 ADOS scores. These data from a clinically indicated cohort broadly replicate previous AOSI validity accounts from ‘high-risk sibling’ studies, particularly beyond the first year. Strong inter-rater agreement indicates viable AOSI inclusion within protocols necessitating blinded evaluation (e.g. intervention trials). Moderate within-participant stability suggests that, like ‘high-risk siblings,’ community-ascertained infants experience variable early trajectories. Lay Abstract We investigated whether a commonly used research assessment – the Autism Observation Scale for Infants (AOSI) – accurately measures autism behaviours among infants showing early signs of autism identified within the community. The AOSI is often included in studies tracking the development of infants at increased likelihood of autism, such as the infant siblings of diagnosed children. However, the suitability of this measure has not previously been tested with community-referred infants. We administered the AOSI with infants when aged 9 to 14 months and again 6 months later. Our researchers – independent of the AOSI development team and newly trained on this measure – were able to administer the brief interactive assessment and score it accurately. The infants’ AOSI scores were linked to their scores on other established and validated clinical assessments, particularly at the second visit when average age was 18 months. Stronger correspondence of AOSI and other scores at this second visit suggests early autism behaviours are better established and more consistent by 18 months of age, even though these infants showed clear enough signs of possible autism to prompt referral to our study around 12 months of age. However, the moderate association of AOSI scores over time suggests that, like infant siblings – who mostly do not develop autism – community-identified infants showing early signs may also have variable developmental pathways in early life.

To investigate associations between functioning, community participation, and quality of life (QoL) and identify whether participation mediates the effects of functioning on QoL.The caregivers of 435 children (211 females, 224 males; mean age 12y; SD 3y 11mo; age range 5-18y) with intellectual disability and autism spectrum disorder, cerebral palsy, Down syndrome, or Rett syndrome reported on their child's functioning (dependence for managing personal needs, mobility, communication, eye contact when speaking), frequency of participation, and QoL. Linear regression and mediation analyses were used to evaluate the relationships between child functioning, participation, and QoL.Children with greater dependency for managing personal needs and limited eye contact when speaking experienced poorer QoL. Less impaired functioning was associated with more frequent participation, which, in turn, was associated with a 3-point gain in QoL for each additional point in frequency of participation (coefficient=2.67, 95% confidence interval 1.56-3.78). The effect of impaired functioning on QoL was partially mediated by participation in children with greater dependency in managing personal needs and those with mildly impaired communication.Greater levels of impairments with poorer functioning, notably a high level of dependence, were associated with poorer QoL. Poorer QoL can be partly explained by less frequent community participation.Investigar las asociaciones entre el funcionamiento, la participación comunitaria y la calidad de vida (CdV) e identificar si la participación media los efectos del funcionamiento en la CdV. MÉTODO: Participaron los cuidadores de 435 niños (211 niñas y 224 niños; media de edad 12 años DS 3 años 11 meses; rango de edad 5-18 años) con discapacidad intelectual y trastorno del espectro autista, parálisis cerebral, síndrome de Down o síndrome de Rett. Informaron sobre el funcionamiento de sus hijos (dependencia para el manejo de necesidades personales, movilidad, comunicación, contacto visual al hablar), frecuencia de participación y calidad de vida. Se realizaron análisis de mediación y regresión lineal para analizar las relaciones entre el funcionamiento, la participación y la calidad de vida de los niños.Los niños con mayor dependencia para manejar sus necesidades personales y aquellos con limitado contacto visual al hablar, experimentaron una peor calidad de vida. Un menor compromiso en el funcionamiento se asoció con una participación más frecuente, que, a su vez, se asoció con una ganancia de 3 puntos en la CdV por cada punto adicional en la frecuencia de participación (coeficiente = 2,67, intervalo de confianza del 95%: 1,56-3,78). El efecto del deterioro del funcionamiento sobre la calidad de vida fue mediado parcialmente por la participación en niños con mayor dependencia en el manejo de sus necesidades personales y en aquellos con un compromiso leve en la comunicación. INTERPRETACIÓN: Niveles mayores de deficiencias en el funcionamiento, en particular un alto nivel de dependencia, se asociaron con una peor calidad de vida. La menor calidad de vida se puede explicar, en parte, por una participación comunitaria menos frecuente.Investigar associações entre funcionamento, participação na comunidade, e qualidade de vida (QV), e identificar se a participação media os efeitos do funcionamento na QV. MÉTODO: Os cuidadores de 435 crianças (211 do sexo feminino, 224 do sexo masculino; média de idade 12a; DP 3a 11m; variação da idade: 5-18a) com deficiência intelectual e transtorno do espectro autista, paralisia cerebral, síndrome de Down, ou síndrome de Rett, relataram o funcionamento de suas crianças (dependência para manejar necessidades pessoais, mobilidade, comunicação, contato pessoal ao falar), frequência de participação, e QV. Análises de regressão linear e de mediação foram usadas para avaliar as relações entre funcionamento da criança, participação, e QV.Crianças com maior dependência para o manejo das necessidades pessoais e contato visual limitado ao falar experimentaram pior QV. Funcionamento menos comprometido foi associado com maior frequência de participação, o que, por sua vez, se associou com um ganho de 3 pontos em QV para cada ponto adicional na frequência de participação (coeficiente=2,67, intervalo de confiança a 95% 1,56-3,78). O efeito do funcionamento deficiente na QV foi parcialmente mediado pela participação em crianças com maior dependência no manejo de necessidades pessoais e naquelas com comunicação levemente comprometida. INTERPRETAÇÃO: Maiores níveis de deficiência com pior funcionamento, notavelmente um maior nível de dependência, foram associados com pior QV. Pior QV pode ser parcialmente explicda por uma participação menos frequente na comunidade.