Access and barriers to supports for children and caregivers attending public child developmental assessment services: Findings from the Sydney child neurodevelopment research registry.

Families can spend years waiting for a developmental assessment. We sought to understand supports caregivers had accessed by the time of their child's first multi-disciplinary developmental assessment, the supports caregivers wanted, and the barriers caregivers reported to accessing these supports. We also sought to understand how government funding schemes (the National Disability Insurance Scheme) and sociodemographic factors influenced access to supports. Caregivers were emailed questionnaires on sociodemographic background and intervention history prior to their child's developmental assessment at a tertiary diagnostic and assessment service. Results from 202 caregivers showed most children were receiving less than 2 hours of support each week at assessment. The most common accessed supports were from general practitioners and pediatricians. Caregivers reported behavioral therapists (41%) and psychologists (29%) as the most desired but inaccessible child supports. Half of caregivers nominated a need for parenting interventions. The most frequent barriers to accessing child supports were wait lists, finance, and knowledge. Government funding improved access to the total number of services received (from 2.7 to 5.2 different services), but for disability specific services only (e.g., speech and occupational therapy). Results highlighted disparities for families without government funding, impacting certain groups (e.g., children over 7 years) and services (e.g., mental health). Socioeconomic disadvantage, parental separation, and, surprisingly, being from a non-culturally/linguistically diverse background were associated with fewer services and more barriers. Results highlight the need to facilitate access to supports for families to align with existing recommendations.

Telehealth assessment of autism in preschoolers using the TELE-ASD-PEDS: A pilot clinical investigation.

PURPOSE: Appropriate early intervention is beneficial but dependent on accurate and timely diagnoses. This has been affected by long waiting lists for face-to-face clinical services, in part due to pandemic lockdowns, with telehealth introduced in many services to continue clinical services. This pilot clinical study investigated the feasibility of integrating a specially-designed telepractice autism assessment tool into a tertiary diagnostic service. METHOD: Eighteen boys (2;4-5;1) participated in the study. Assessment was undertaken as per standard practice (parent interview, questionnaires, review of reports), with an additional telepractice assessment, included in place of face-to-face assessment, to provide clinicians with an observation of the children's communication, behaviours, and interests. Ten parents provided feedback via semi-structured interviews. RESULT: The TELE-ASD-PEDS was a feasible assessment tool in terms of administration, clinical experience, and information gained through the assessment process. Parents reported mostly positive experiences of the TELE-ASD-PEDS and made suggestions for improvements for future use of this tool. CONCLUSION: It is possible to obtain useful information about a child's autism-specific behaviours using the activities in the TELE-ASD-PEDS. This information can be combined with clinical history from parents using the DSM-5 framework to provide a gold standard assessment for autism.

Saliva DNA: An alternative biospecimen for single nucleotide polymorphism chromosomal microarray analysis in autism.

Chromosomal microarray analysis (CMA) is typically performed for investigation of autism using blood DNA. However, blood collection poses significant challenges for autistic children with repetitive behaviors and sensory and communication issues, often necessitating physical restraint or sedation. Noninvasive saliva collection offers an alternative, however, no published studies to date have evaluated saliva DNA for CMA in autism. Furthermore, previous reports suggest that saliva is suboptimal for detecting copy number variation. We therefore aimed to evaluate saliva DNA for single nucleotide polymorphism (SNP) CMA in autistic children. Saliva DNA from 48 probands and parents (n = 133) was obtained with a mean concentration of 141.7 ng/µL. SNP CMA was successful in 131/133 (98.5%) patients from which we correlated the size and accuracy of a copy number variant(s) called between a proband and carrier parent, and for a subgroup (n = 17 probands) who had a previous CMA using blood sample. There were no discordant copy number variant results between the proband and carrier parent, or the subgroup, however, there was an acceptable mean size difference of 0.009 and 0.07 Mb, respectively. Our findings demonstrate that saliva DNA can be an alternative for SNP CMA in autism, which avoids blood collection with significant implications for clinical practice guidelines.

Mental health concerns in children with neurodevelopmental conditions attending a developmental assessment service.

Children with neurodevelopmental conditions (NDCs), such as autism and attention-deficit/hyperactivity disorder (ADHD), frequently experience co-occurring mental health concerns. Little research has examined mental health symptoms in children attending developmental assessment services. This study profiled mental health symptoms in children with NDCs attending a hospital-based diagnostic service for their first diagnostic and developmental assessment. Participants were 232 children aged 1.96-17.51 years. Mental health concerns were assessed using the Child Behavior Checklist (CBCL), a caregiver-rated, questionnaire-based assessment of behavioural and emotional difficulties. Subclinical or clinically elevated internalising, externalising and total scores on the CBCL were reported in approximately 48% of preschool and 61% of school-age children. These increased prevalence rates, using the same cutoff scores, remained after excluding items specifically relating to neurodevelopmental concerns (36% preschool; 37% school-age children). More school-aged females reported elevated internalising problems, relative to males (67 % vs 48 %). The number of diagnoses impacted symptoms, with children who received two or more DSM-5 diagnoses showing a greater rate of subclinical or clinically elevated scores, relative to children who received one DSM-5 diagnosis. Our findings demonstrate that children attending developmental assessment services have considerable mental health needs. It is critical that mental health concerns are identified and addressed in children when they first present to developmental assessment services, and that service providers are equipped to provide appropriate resources and pathways to ongoing care.

Eye-tracking correlates of response to joint attention in preschool children with autism spectrum disorder.

BACKGROUND: A number of differences in joint attention behaviour between children with autism spectrum disorder (ASD) and typically developing (TD) individuals have previously been documented. METHOD: We use eye-tracking technology to assess response to joint attention (RJA) behaviours in 77 children aged 31 to 73 months. We conducted a repeated-measures analysis of variance to identify differences between groups. In addition, we analysed correlations between eye-tracking and clinical measures using Spearman's correlation. RESULTS: The children diagnosed with ASD were less likely to follow gaze compared to TD children. Children with ASD were less accurate at gaze following when only eye gaze information was available, compared to when eye gaze with head movement was observed. Higher accuracy gaze-following profiles were associated with better early cognition and more adaptive behaviours in children with ASD. Less accurate gaze-following profiles were associated with more severe ASD symptomatology. CONCLUSION: There are differences in RJA behaviours between ASD and TD preschool children. Several eye-tracking measures of RJA behaviours in preschool children were found to be associated with clinical measures for ASD diagnosis. This study also highlights the construct validity of using eye-tracking measures as potential biomarkers in the assessment and diagnosis of ASD in preschool children.

Diagnostic delay in children with neurodevelopmental conditions attending a publicly funded developmental assessment service: findings from the Sydney Child Neurodevelopment Research Registry.

OBJECTIVES: Early developmental assessment is crucial for effective support and intervention. This study examined factors that contribute to (a) older child age when caregivers first became concerned about their child's development and (b) older child age at the point of entry into developmental and diagnostic assessment. We also quantified how factors contributed to risk of children not receiving an assessment by 5 years and considered the acceptability of electronic data capture for families. DESIGN: This cross-sectional study collected information about caregiver developmental concerns, family history and child characteristics. SETTING: Children and families entered a large, publicly funded hospital-based paediatric developmental assessment service. PARTICIPANTS: Consecutively enrolled children (N=916) aged 6 months to 17 years with neurodevelopmental concerns and their caregivers. MAIN OUTCOMES AND MEASURES: A developmental history questionnaire completed by caregivers. RESULTS: The average age that caregivers identified developmental concerns was 3.0 years of age but the average age of a receiving a developmental assessment was 6.6 years. Only 46.4% of children received a diagnostic assessment by 5 years of age, even though 88.0% of caregivers were concerned about their child's development by that age. Parental age, relationship status, education level, prior use of support services and being from a culturally and linguistically diverse background contributed to age at identification of concern, age at diagnostic assessment and the likelihood of receiving a diagnostic assessment by 5 years. Electronic data capture had high acceptability, with 88.2% of caregivers reporting a preference for electronic completion of questionnaires. CONCLUSIONS: The study shows a substantial delay in diagnostic assessments that leaves most vulnerable children without an assessment by school age and highlights contributors to delays. These delays highlight the complexity of delivering early intervention and support policies that rely on swift and appropriate developmental assessment to vulnerable families.

Identification of subgroups of children in the Australian Autism Biobank using latent class analysis.

BACKGROUND: The identification of reproducible subtypes within autistic populations is a priority research area in the context of neurodevelopment, to pave the way for identification of biomarkers and targeted treatment recommendations. Few previous studies have considered medical comorbidity alongside behavioural, cognitive, and psychiatric data in subgrouping analyses. This study sought to determine whether differing behavioural, cognitive, medical, and psychiatric profiles could be used to distinguish subgroups of children on the autism spectrum in the Australian Autism Biobank (AAB). METHODS: Latent profile analysis was used to identify subgroups of children on the autism spectrum within the AAB (n = 1151), utilising data on social communication profiles and restricted, repetitive, and stereotyped behaviours (RRBs), in addition to their cognitive, medical, and psychiatric profiles. RESULTS: Our study identified four subgroups of children on the autism spectrum with differing profiles of autism traits and associated comorbidities. Two subgroups had more severe clinical and cognitive phenotype, suggesting higher support needs. For the 'Higher Support Needs with Prominent Language and Cognitive Challenges' subgroup, social communication, language and cognitive challenges were prominent, with prominent sensory seeking behaviours. The 'Higher Support Needs with Prominent Medical and Psychiatric and Comorbidity' subgroup had the highest mean scores of challenges relating to social communication and RRBs, with the highest probability of medical and psychiatric comorbidity, and cognitive scores similar to the overall group mean. Individuals within the 'Moderate Support Needs with Emotional Challenges' subgroup, had moderate mean scores of core traits of autism, and the highest probability of depression and/or suicidality. A fourth subgroup contained individuals with fewer challenges across domains (the 'Fewer Support Needs Group'). LIMITATIONS: Data utilised to identify subgroups within this study was cross-sectional as longitudinal data was not available. CONCLUSIONS: Our findings support the holistic appraisal of support needs for children on the autism spectrum, with assessment of the impact of co-occurring medical and psychiatric conditions in addition to core autism traits, adaptive functioning, and cognitive functioning. Replication of our analysis in other cohorts of children on the autism spectrum is warranted, to assess whether the subgroup structure we identified is applicable in a broader context beyond our specific dataset.

Quality and accessibility of written development assessment reports provided to caregivers in a publicly funded child developmental assessment service.

LAY ABSTRACT: Despite long wait times, public paediatric developmental assessment services remain crucial for assessment of children. Assessment is a critical opportunity to guide the placement of supports to improve outcomes. There is little research examining how clinical assessment services conduct their assessments, present results and write reports to families. This study examined 85 reports provided to caregivers at a developmental assessment service. Reports were evaluated for whether they (1) addressed caregiver perceived needs, (2) used available data to provide appropriate information about child needs, (3) provided recommendations that were actionable and specific to needs, (4) had appropriate readability levels and (5) followed existing autism assessment guidelines. Findings showed clinicians were more focused on autism diagnostic needs while caregivers were more focused on non-diagnostic needs. Recommendations related to autism diagnoses were actionable, but they rarely addressed comorbidities such as cognitive impairments or mental health. For instance, only 13% of reports contained recommendations for conditions other than autism spectrum disorder, despite 61% of the population receiving two or more diagnoses. Reports largely followed autism assessment guidelines, but the language used was more complex for families than recommended. Recommendations for future practice are provided so that consideration may be given to how to improve the quality and effectiveness of reports for families attending services.

Patient safety and quality care for children with intellectual disability: An action research study.

Children with intellectual disability experience significant challenges in accessing and receiving high-quality healthcare leading to poorer health outcomes and negative patient experiences. Families of these children often report a need for healthcare staff to better understand, communicate, and collaborate for better care while staff acknowledge a lack of training. To address this, we utilised an action research framework with a pre- and post- survey to evaluate an integrated continuing professional development and quality improvement program combining strategies from education, behavioural psychology and quality improvement that was delivered in two departments within a tertiary children's Hospital in Metropolitan Sydney in 2019-2020. Parents reported noticeable changes in the clinical practice of staff, and staff acknowledged and attributed their shift in behaviour to raising awareness and discussions around necessary adaptations. The program demonstrates a novel method for knowledge translation to practice and systems improvements.

Non-pharmacological interventions for autistic children: An umbrella review.

LAY ABSTRACT: What is already known about the topic?The delivery of evidence-based interventions is an important part of the clinical pathway for many autistic children and their families. However, parents, practitioners, and policymakers face challenges making evidence informed decisions, due to the wide variety of interventions available and the large, and often inconsistent, body of evidence regarding their effectiveness.What this paper adds?This is a comprehensive umbrella review, also known as a 'review of reviews', which examined the range of interventions available, the evidence for their effectiveness, and whether effects were influenced by factors relating to individual children (e.g. chronological age, core autism characteristics, and related skills) or the ways interventions were delivered (by whom and in what setting, format, mode, and amount). There was evidence for positive therapeutic effects for some, but not all, interventions. No single intervention had a positive effect for all child and family outcomes of interest. The influence of child and delivery characteristics on effects was unclear.Implications for practice, research, and policyThe findings provide parents, practitioners, and policymakers with a synthesis of the research evidence to inform decision-making and highlight the importance of individualised approaches in the absence of clear and consistent evidence. The findings also highlight the need to improve consistency and completeness in reporting of research studies, so that the same questions may be answered more comprehensively in the future.

Examining the pharmacological and psychological treatment of child and adolescent ADHD in Australia: Protocol for a retrospective cohort study using linked national registry data.

INTRODUCTION: Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental disorder which affects 5% of children globally. In Australia, it is estimated that 4.1% of children and adolescents have ADHD. While research has examined the treatment and outcomes of children with ADHD attending public mental health services during their time in the public system in Australia, it is not known what treatment they received before and after these treatment episodes, which will provide a more complete understanding of these children's treatment journey. METHODS AND ANALYSIS: We will link clinical data from cohorts of children and adolescents treated in the public child and youth mental health and/or child development services in Brisbane, Melbourne and Sydney to the Medicare Benefits Schedule (MBS), Pharmaceutical Benefits Scheme (PBS) and National Death Index. MBS data will demonstrate the treatment journey with respect to clinicians seen, and treatment episodes from the public health service data sets will be examined to assess if the type and intensity of treatment are related to treatment outcomes. PBS data will reveal all psychotropic medications prescribed, allowing an examination of not just ADHD medications, but also other psychotropics which may indicate co-occurring conditions (eg, anxiety and mood disorders). Statistical analyses will include descriptive statistics to describe the rates of specific medications and clinician specialties seen. Linear and logistic regression will be used to model how treatment and sociodemographic variables relate to routinely collected outcome measures in the public health system while controlling for covarying factors. ETHICS AND DISSEMINATION: This study has been approved by the following institutional ethics committees: (1) Children's Health Queensland Hospital and Health Service (HREC/21/QCHQ/76260), (2) The University of Queensland (2021/HE002143) and (3) The Australian Institute of Health and Welfare (EO2021/4/1300). Findings will be disseminated through peer-reviewed journals, conferences, professional associations and to public mental health services that treat ADHD.

Patterns of sensory modulation by age and sex in young people on the autism spectrum.

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.

An evidence-based framework for determining the optimal amount of intervention for autistic children.

The provision of timely, effective, and socially valid non-pharmacological intervention is at the core of efforts to support the development of young autistic children. These efforts are intended to support children to develop skills, empower their caregivers, and lay the foundation for optimal choice, independence, and quality of life into adulthood. But what is the optimal amount of intervention? In this Viewpoint, we review current guidelines and consider evidence from an umbrella review of non-pharmacological interventions for autistic children aged up to 12 years. We show the lack of consensus on the issue, identify factors that might be relevant to consider, and present an evidence-based framework for determining the optimal amount of intervention for each child, along with recommendations for future research.

Barriers and facilitators: Clinicians' opinions and experiences of telehealth before and after their use of a telehealth platform for child language assessment.

BACKGROUND: Despite emerging evidence of validity and reliability, speech and language therapists' (SLT) uptake of telehealth has been limited and barriers remain to the effective and confident use of this service model. The COVID-19 pandemic has caused significant disruption to essential health services, including speech and language therapy assessment and intervention, meaning that telehealth must now be considered as part of the suite of service delivery options for all clinicians. AIMS: To explore the perceived barriers and facilitators of telehealth among community paediatric SLTs before and after their use of a telehealth platform with an embedded standardised assessment tool. METHODS & PROCEDURES: Mixed-methods questionnaires were developed for this study and completed by SLTs before and after the 3-month trial of the telehealth platform. A total of 38 SLTs completed the pre-trial questionnaire and training in the use of telehealth platform (Coviu), including instruction in using a standardised, norm referenced language test as an integrated tool within the Coviu platform. A total of 27 SLTs went on to use the telehealth platform, and 25 of these completed the post-trial questionnaire on which subsequent qualitative and quantitative analysis was completed. OUTCOMES & RESULTS: Prior to using the platform, perceived barriers included technology issues, limited clinician experience and concerns around parent acceptance of the service. Potential facilitators included access to appropriate platforms, tools and resources as well as increased clinician confidence with telehealth. Following the trial, barriers to telehealth use continued to include technology barriers, particularly internet stability, and client issues, including suitability for telehealth services. Facilitators for future telehealth use included access to appropriate platforms for telehealth, stable and appropriate internet connectivity, and more extensive telehealth resources for both assessment and intervention for this mode of service delivery. CONCLUSIONS & IMPLICATIONS: This study provides insights into the perceptions of the barriers and facilitating factors for telehealth use among community-based SLTs. This information will be useful in developing strategies to promote uptake and effective and confident use of telehealth as a mode of service delivery beyond the pandemic. WHAT THIS PAPER ADDS: What is already known on the subject Research about telehealth has shown that it is a reliable and valid way of delivering speech pathology services, yet many clinicians have been wary of its use and uptake of telehealth prior to COVID-19 had been limited. We wanted to know what SLTs thought about using telehealth before and after participating in a 3-month trial of a telehealth platform with an embedded formal language assessment. What this study adds to existing knowledge This study indicates that technology issues including internet stability are a barrier to effective telehealth services, but that appropriate telehealth platforms, resources and experience are facilitators of uptake and successful use of telehealth. What are the potential or actual clinical implications of this work? This information will be useful in developing strategies to promote uptake and effective and confident use of telehealth as a mode of service delivery for children during and beyond the pandemic, including those isolated by geographical or transport barriers.

Clinical outcomes and associated predictors of early intervention in autism spectrum disorder: a study protocol.

INTRODUCTION: Research highlights the importance of early intervention for children with autism spectrum disorder with better outcomes associated with earlier access to early intensive intervention (EII) programmes. However, there is significant variability in response to EII despite children receiving the same programmes. METHODS AND ANALYSIS: A prospective, multisite cohort study using a pre-post design assesses the predictors of early intervention outcomes for children who receive EII through six early intervention services (Autism Specific Early Learning and Care Centres, ASELCCs) across Australia. Child and family characteristics at entry to and exit from ASELCCs are ascertained using measures of autism symptoms (Autism Diagnostic Observation Schedule-2; Social Communication Questionnaire); cognitive, language and developmental skills (Mullen Scale of Early Learning); adaptive function (Vineland Adaptive Behaviour Scale-second Edition); behaviours (Child Behaviour Checklist-1.5 to 5 years; Restricted Repetitive Behaviour Scale); parental stress (Parent Stress Index-4 Short Form); quality of life (Quality of Life in Autism Scale) and a semistructured family history questionnaire for sociodemographic, family and psychosocial characteristics. Characteristics at entry are used as predictors of outcome at exit following EII approximately 12 months later. The change in score from baseline to exit will be the primary outcome of interest. The mediating role of family and psychosocial factors will also be considered. ETHICS APPROVAL: University of New South Wales Human Research Ethics Committee (HC14267). DISSEMINATION OF RESULTS: Findings will be published in peer-reviewed journals and presented at conferences. A report summarising data and the interpretation of data will be published.

Parents' and Service Providers' Experiences of Accessing Health Services from an Intellectual Disability Health Team.

A pediatric assessment service for children with Intellectual Disability (ID) was established in a culturally diverse region of Sydney, Australia, to meet the health needs of children and young people with ID. This paper reports on parents' and providers' experiences using qualitative and quantitative analysis of surveys. The survey responses from the parents' enumerated their key concerns and the practical help they received from the service. Responses from service providers reported a high level of satisfaction with the services and valued the quality of assessment reports. The service facilitated inter-agency collaboration and enhanced the access to quality health care.

Clinician experiences using standardised language assessments via telehealth.

Purpose: Telehealth is rapidly becoming an essential part of speech-language pathologists' core business, and yet the experiences and opinions of community-based therapists in using telehealth remain relatively unknown. This paper describes a recent study in which speech-language pathologists were provided with access to a formal language assessment within a telehealth platform and asked to provide feedback about their experiences.Method: Twenty-seven speech-language pathologists in paediatric practice were recruited via callouts on social media, community contacts and professional networks. The participants were provided access to a telehealth platform with a built-in formal language assessment and asked to use the assessment with their own caseload as clinically indicated and provide feedback after each assessment. Questionnaire data was collected via an online survey system and contained questions about each assessment including the most enjoyable and most difficult aspects of the assessment and their overall experience of the platform.Result: More than 100 assessments were completed during the 3-month trial, with clinicians reporting that on most occasions, video and audio quality was adequate or more than adequate, and that interactions with their child clients were effective. Qualitative data indicated that technical difficulties were a drawback to the assessments, but that ease of use of the assessment, the added functionality of using the assessment within the telehealth platform and factors including general benefits of telehealth, particularly that of being able to continue to provide services when face-to-face work was not possible were seen as positive elements.Conclusion: This study adds clinicians' voices to the research into telehealth, indicating that the assessment within the telehealth platform was generally easy to use, and provided an unexpected depth of insight and connection for clinicians and their clients. Future research may consider the voices of other stakeholders in telehealth interactions, including parents and child clients.

Predictors of adaptive functioning in preschool aged children with autism spectrum disorder.

Difficulties in adaptive functioning are common in autism spectrum disorder (ASD) and contribute to negative outcomes across the lifespan. Research indicates that cognitive ability is related to degree of adaptive functioning impairments, particularly in young children with ASD. However, the extent to which other factors, such as socioeconomic status (SES) and ASD symptom severity, predict impairments in adaptive functioning remains unclear. The goal of this study was to determine the extent to which SES, ASD symptom severity, and cognitive ability contribute to variability in domain-specific and global components of adaptive functioning in preschool-aged children with ASD. Participants were 99 preschool-aged children (2-6 years) with ASD who attended a tertiary diagnostic service. Results demonstrate that cognitive ability accounted for a significant proportion of variance in domain-specific and global components of adaptive functioning, with higher cognitive ability predicting better adaptive functioning. Results also demonstrate that SES accounted for some variability in domain-specific communication skills and global adaptive functioning when compared to basic demographic factors alone (age and gender). By contrast, ASD symptom severity did not predict variability in domain-specific or global components of adaptive functioning. These findings provide support for a relationship between cognitive ability and adaptive functioning in preschool-aged children with ASD and help to explain specific contributions of verbal and nonverbal ability to adaptive functioning; from this, we can better understand which children are likely to show the greatest degree of impairments across components of adaptive functioning early in development. LAY SUMMARY: People with autism often have difficulties with everyday communication, daily living, and social skills, which are also called adaptive functioning skills. This study investigated factors that might be related to these difficulties in preschoolers with autism. We found that better cognitive ability, but not autism symptoms, were associated with better adaptive functioning. This suggests that interventions for young children with autism should take into account cognitive ability to better understand which children are likely to have difficulties with adaptive functioning.

The Acceptability and Efficacy of Electronic Data Collection in a Hospital Neurodevelopmental Clinic: Pilot Questionnaire Study.

BACKGROUND: There is a growing need for cost-efficient and patient-centered approaches to support families in hospital- and community-based neurodevelopmental services. For such purposes, electronic data collection (EDC) may hold advantages over paper-based data collection. Such EDC approaches enable automated data collection for scoring and interpretation, saving time for clinicians and services and promoting more efficient service delivery. OBJECTIVE: This pilot study evaluated the efficacy of EDC for the Child Development Unit, a hospital-based diagnostic assessment clinic in the Sydney Children's Hospital Network. Caregiver response rates and preference for EDC or paper-based methods were evaluated as well as the moderating role of demographic characteristics such as age, level of education, and ethnic background. METHODS: Families were sent either a paper-based questionnaire via post or an electronic mail link for completion before attending their first on-site clinic appointment for assessment. A total of 62 families were provided a paper version of the questionnaire, while 184 families were provided the online version of the same questionnaire. RESULTS: Completion rates of the questionnaire before the first appointment were significantly higher for EDC (164/184, 89.1%) in comparison to paper-based methods (24/62, 39%; P<.001). Within the EDC group, a vast majority of respondents indicated a preference for completing the questionnaire online (151/173, 87.3%), compared to paper completion (22/173, 12.7%; P<.001). Of the caregiver demographic characteristics, only the respondent's level of education was associated with modality preference, such that those with a higher level of education reported a greater preference for EDC (P=.04). CONCLUSIONS: These results show that EDC is feasible in hospital-based clinics and has the potential to offer substantial benefits in terms of centralized data collation, time and cost savings, efficiency of service, and resource allocation. The results of this study therefore support the continued use of electronic methods to improve family-centered care in clinical practices.

A national harmonised data collection network for neurodevelopmental disorders: A transdiagnostic assessment protocol for neurodevelopment, mental health, functioning and well-being.

Background: Children with neurodevelopmental disorders share common phenotypes, support needs and comorbidities. Such overlap suggests the value of transdiagnostic assessment pathways that contribute to knowledge about research and clinical needs of these children and their families. Despite this, large transdiagnostic data collection networks for neurodevelopmental disorders are not well developed. This paper describes the development of a nationally supported transdiagnostic clinical and research assessment protocol across Australia. The vision is to establish a harmonised network for data collection and collaboration that promotes transdiagnostic clinical practice and research. Methods: Clinicians, researchers and community groups across Australia were consulted using surveys and national summits to identify assessment instruments and unmet needs. A national research committee was formed and, using a consensus approach, selected assessment instruments according to pre-determined criteria to form a harmonised transdiagnostic assessment protocol. Results: Identified assessment instruments were clustered into domains of transdiagnostic assessment needs, which included child functioning/quality of life, child mental health, caregiver mental health, and family background information. From this, the research committee identified a core set of nine measures and an extended set of 14 measures that capture these domains with potential for further modifications as recommended by clinicians, researchers and community members. Conclusion: The protocol proposed here was established through a strong partnership between clinicians, researchers and the community. It will enable (i) consensus driven transdiagnostic clinical assessments for children with neurodevelopmental disorders, and (ii) research studies that will inform large transdiagnostic datasets across neurodevelopmental disorders and that can be used to inform research and policy beyond narrow diagnostic groups. The long-term vision is to use this framework to facilitate collaboration across clinics to enable large-scale data collection and research. Ultimately, the transdiagnostic assessment data can be used to inform practice and improve the lives of children with neurodevelopmental disorders and their families.