Investigating Parental Observations of Early Autism Development in Simplex and Multiplex Families.

Past research has highlighted the importance of early identification of developmental differences to improve targeted access to early interventions or supports. As such, it is of particular importance in the context of children at elevated likelihood of autism (such as where an older sibling has a diagnosis of autism), to better understand when and which early concerns are important as predictors of which children will benefit from pre-diagnostic supports. This study explored the number and frequency of retrospective parent reported concerns within the first year of life for children diagnosed with autism, both those who had an older sibling diagnosed with autism and those who did not, as well as for undiagnosed siblings. We found that at both 0-6 and 7-12 months, the only factor related to the presence or absence of early parent reported concerns was child diagnostic status, with the presence of reported early concerns more likely for children with a diagnosis of autism. These findings suggest that for children at elevated likelihood of autism, parents' concerns are driven primarily by developmental differences, with child's birth order and sibling diagnostic status not impacting on parent early concerns.

Community Priorities for Outcomes Targeted During Professional Supports for Autistic Children and their Families.

PURPOSE: Professional supports play an important role in aiding autistic children's learning, participation, and overall wellbeing. Yet, limited research exists on stakeholders' perspectives and preferences regarding targeted outcomes for children undergoing support facilitated by professionals. This study investigated stakeholder views on the priority and appropriateness of outcomes intentionally targeted during the provision of supports to autistic children. METHOD: A survey of 181 participants (including 72 autistic adults, 85 parents, and 69 professionals) from Australia and New Zealand was conducted. Participants rated the appropriateness and priority of 47 potential child and parent outcomes within the context of support. RESULTS: The highest priority outcome was improving child mental wellbeing, with the lowest being reducing sensory seeking or avoidant behaviours. Priority ratings for certain outcomes differed based on the child's age. Over half of the participants rated reducing sensory seeking/avoidant behaviours and reducing focused interests as inappropriate outcomes of supports. Further, variations in the appropriateness of outcomes differed among participant groups. CONCLUSION: Reflecting the growing acceptance of neurodiversity-affirming practices, these results underscore support for targeting outcomes that are meaningful to the autistic and autism communities, with less emphasis on those which reflect neurotypical behavioural standards.

Community perspectives on the appropriateness and importance of support goals for young autistic children.

LAY ABSTRACT: Researchers do not know much about what autistic adults, parents and professionals think about support goals for young autistic children. People's views of support goals might also be influenced by their beliefs about early support more generally. This survey involved 87 autistic adults, 159 parents of autistic children and 80 clinical professionals living in New Zealand and Australia. We asked participants questions about themselves and what they thought about early support for young autistic children in general. We then asked participants to rate whether different support goals were appropriate for young autistic children and, if they were appropriate, to rate their level of priority. We found that autistic adults, parents and professionals all rated goals about the adult changing to better support the child, reducing and replacing harmful behaviours and improving the child's quality of life as the highest priorities. They all rated goals about autism characteristics, play skills and academic skills as the lowest priorities. Compared to parents and/or professionals, autistic adults gave lower priority ratings for play skills, autism characteristics and participation goals. Autistic adults were also more likely to rate goals related to play skills and autism characteristics as inappropriate. While these three participant groups generally agreed on the order of priority of early support goals for young autistic children, autistic adults found goals related to autism characteristics, play and/or participation to be an even lower priority and less appropriate than parents and professionals.

Supporting tamariki takiwatanga Maori (autistic Maori children): Exploring the experience of early childhood educators.

LAY ABSTRACT: The knowledge and attitudes of educators can have a strong influence on the experiences of autistic children who attend inclusive early childhood settings. Autistic children from under-represented ethnic groups, for example, tamariki takiwatanga Maori (autistic Maori children), are likely to face extra challenges and educators need to consider ways to support their cultural development. For this study, we interviewed 12 educators with recent experience supporting tamariki takiwatanga Maori in inclusive early childhood settings. We constructed three themes and seven subthemes from the interview data. We found that educators' understandings of autism were mostly in line with the neurodiversity perspective, which views autism as a difference, not a disorder. We also found similarities between the neurodiversity perspective and Maori perspectives of autism and a need for more training and resources based upon a Maori world view and available in te reo Maori (the Maori language).

Telehealth-delivered naturalistic developmental behavioural intervention with and without caregiver acceptance and commitment therapy for autistic children and their caregivers: protocol for a multi-arm parallel group randomised clinical trial.

INTRODUCTION: Timely access to early support that optimises autistic children's development and their caregiver's mental health is critical. Naturalistic developmental behavioural interventions (NDBIs) and acceptance and commitment therapy (ACT) are evidence-based supports that can enhance child learning and behaviour, and adult well-being, respectively. The traditional face-to-face delivery of these approaches is resource intensive. Further, little is known about the benefit of parallel child-focused and caregiver-focused supports. The aims of this trial are to evaluate the effectiveness and social validity of telehealth-delivered, caregiver-implemented, child-focused NDBI and caregiver-focused ACT when delivered alone and in parallel, on autistic children's social communication and caregiver well-being. METHODS AND ANALYSIS: The study will use a randomised, single-blind clinical trial with three parallel arms: NDBI; ACT and ACT+NDBI. We will recruit a minimum of 78, 2-5-year-old autistic children and their families throughout Aotearoa New Zealand. Support will be delivered over 13 weeks using a combination of culturally enhanced web-based modules and online group coaching. Primary outcome variables include children's social communication/engagement with their caregiver as well as caregiver stress and will be evaluated using a repeated measures multivariate analysis of variance. Outcome variables are assessed at baseline (before randomisation), immediately postparticipation and at 3-month follow-up. ETHICS AND DISSEMINATION: The trial is approved by the Health and Disability Ethics Committee (2022 FULL 12058). The findings of this trial will be disseminated through peer-reviewed journals and national and international conference proceedings regardless of the magnitude/direction of effect. Additionally, data will be shared with stakeholder groups, service providers and health professionals. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry (ACTRN12622001134718).

Parent reported barriers and facilitators to support services for autistic children in Aotearoa New Zealand.

LAY ABSTRACT: Parents might have problems in getting support services for their autistic child due to certain barriers. However, there might also be things that can ease or facilitate parents' access to support services. In this study, New Zealand parents were asked about their experiences in getting support services for their autistic child. We also looked at differences in reported barriers and facilitators based on several demographic factors with a focus on family level of financial resourcing. A total of 173 parents completed a survey. The results suggested that parents experienced several barriers, particularly related to service pathways. Facilitators were also experienced, predominantly related to providers. Financial resourcing predicted the number of parent-reported barriers. Both lower level of family financial resourcing and having a non-binary child predicted parents' rating of the extent of barriers. Child age and level of speech were predictors for reports of experiencing a higher number of facilitators, with parents of younger children or of non-speaking autistic children reporting a greater number of facilitators. We discuss how these results may be useful to support service delivery and identify areas for future research.

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.

Barriers and facilitators for obtaining support services among underserved families with an autistic child: A systematic qualitative review.

LAY ABSTRACT: Families from underrepresented ethnic or racial groups and those with limited financial resources could experience more difficulty in accessing support services for their autistic child due to certain types of barriers. We searched academic journals, websites, and other sources for studies which looked at what barriers might be present for such families and what might help families access support services for their autistic child. The search found 18 studies. Results from each study were examined and coded into themes. Parents reported that accessibility, diversity of support services, and stigma influenced their experiences with support services. We discuss what these findings might mean for future research and for service delivery.

Parent-reported atypical development in the first year of life and age of autism diagnosis.

This study examined whether parent-reported atypical development in their child's first year was associated with age of diagnosis and age when parents first needed to consult a specialist about their child's development. It involved 423 children who participated in the Australian Autism Biobank. Most parents retrospectively identified ≥ 1 domain of atypical child development. Atypical development in most domains was associated with an earlier age when parents felt specialist consultation was needed. Atypical development in the "gaze abnormalities", "lack of response to social stimuli", and "no social communication" subdomains within the social domain was associated with an earlier age of diagnosis, as was atypical development in the "hypo/hypersensitivity" and "preoccupation with parts of objects" subdomains within the stereotyped/restricted behavior domain.

Parent-reported Early Atypical Development and Age of Diagnosis for Children with Co-occurring Autism and ADHD.

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.

The use of language in autism research.

The past three decades have seen a major shift in our understanding of the strong links between autism and identity. These developments have called for careful consideration of the language used to describe autism. Here, we briefly discuss some of these deliberations and provide guidance to researchers around language use in autism research.

Anesthetic Exposure During Childhood and Neurodevelopmental Outcomes: A Systematic Review and Meta-analysis.

Importance: Clinical studies of neurodevelopmental outcomes after anesthetic exposure have evaluated a range of outcomes with mixed results. Objective: To examine via meta-analyses the associations between exposure to general anesthesia and domain-specific neurodevelopmental outcomes in children. Data Sources: PubMed/MEDLINE, Embase, CINAHL, Web of Science and the Cochrane Library were searched from inception to August 31, 2021. Study Selection: Inclusion criteria were exposures to procedures requiring general anesthesia at younger than 18 years and evaluation of long-term neurodevelopmental function after exposure. Studies lacking unexposed controls or focused on children with major underlying comorbidities were excluded. Data Extraction and Synthesis: Extracted variables included effect size; hazard, risk, or odds ratio; number of exposures; procedure type; major comorbidities; age of exposure and assessment; presence of unexposed controls; and study design. Studies were independently reviewed by 2 coders, and review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Data were pooled using a random-effects model. Main Outcomes and Measures: The main outcomes were standardized mean differences (SMD) for scores in the neurodevelopmental domains of academics, behavioral problems, cognition, executive function, general development, language, motor function, nonverbal reasoning, social cognition, and hazard and risk of neurodevelopmental disorder diagnoses. Results: A total of 31 studies contributed data for meta-analysis. For each of the assessed neurodevelopmental domains, the numbers of children evaluated ranged from 571 to 63 315 exposed and 802 to 311 610 unexposed. Children with any exposure (single or multiple) had significantly worse behavioral problems scores, indicating more behavioral problems (SMD, -0.10; 95% CI, -0.18 to -0.02; P = .02), and worse scores in academics (SMD, -0.07; 95% CI -0.12 to -0.01; P = .02), cognition (SMD, -0.03; 95% CI, -0.05 to 0.00; P = .03), executive function (SMD, -0.20; 95% CI, -0.32 to -0.09; P < .001), general development (SMD, -0.08; 95% CI, -0.13 to -0.02; P = .01), language (SMD, -0.08; 95% CI, -0.14 to -0.02; P = .01), motor function (SMD, -0.11; 95% CI, -0.21 to -0.02; P = .02), and nonverbal reasoning (SMD, -0.15; 95% CI, -0.27 to -0.02; P = .02). Higher incidences of neurodevelopmental disorder diagnoses were also reported (hazard ratio, 1.19; 95% CI, 1.09 to 1.30; P < .001; risk ratio, 1.81; 95% CI, 1.25 to 2.61; P = .002). Conclusions and Relevance: These findings support the hypothesis that associations between anesthetic exposure during childhood and subsequent neurodevelopmental deficits differ based on neurodevelopmental domain.

Evaluating a Two-Tiered Parent Coaching Intervention for Young Autistic Children Using the Early Start Denver Model.

Objectives: Early intervention can improve the outcomes of young autistic children, and parents may be well placed to deliver these interventions. The Early Start Denver Model (ESDM) is a naturalistic developmental behavioral intervention that can be implemented by parents with their own children (P-ESDM). This study evaluated a two-tiered P-ESDM intervention that used a group parent coaching program, and a 1:1 parent coaching program. We evaluated changes in parent use of the ESDM and parent stress, as well as child engagement, communication, and imitation. Methods: Seven autistic or probably autistic children (< 60 months old) and their parents participated. A multiple-baseline design was used to compare individual changes between Baseline 1, Group Coaching (Tier 1), Baseline 2, and 1:1 Coaching (Tier 2). Parent and child behaviors were analyzed from weekly videos and graphed. Parenting stress was measured. Results: All parents improved in their use of ESDM strategies after the Tier 1 intervention. Changes in parent fidelity during Tier 2 were mixed, but all parents maintained higher than baseline levels of fidelity. Six parents demonstrated above 75% ESDM fidelity in at least one session. There were positive changes in parent stress levels pre- post-intervention. Positive results were found for most children's levels of engagement, imitation, and communication. There were significant positive relationships between parent fidelity and both child engagement and child functional utterances. Conclusions: Group P-ESDM is a promising approach for improving parent fidelity and some child outcomes. Future randomized and controlled studies of group P-ESDM, using standardized outcome measures, are warranted. Supplementary Information: The online version contains supplementary material available at 10.1007/s41252-022-00264-8.

Effects of a low-intensity Early Start Denver Model-based intervention delivered in an inclusive preschool setting.

The Early Start Denver Model (ESDM) is a promising early intervention for promoting improved social, cognitive, and communication outcomes for young children with autism spectrum disorder (ASD). However, most studies evaluating group-based delivery of this program have used 15-25 h per week of intervention in specialized ESDM preschools with low child-teacher ratios. Thus, the positive results from such studies might not be obtained when this intervention model is evaluated in more typical inclusive preschool settings. In this study, a low-intensity version of the ESDM was delivered to three young children with ASD in their regular inclusive preschool by a certified therapist who did not typically work at any of the preschools. The intervention procedures were implemented for 3 h per week over an 8- to 10-week period. Data were gathered on children's levels of participation, imitation, and communication from weekly 10-min video recordings. The effects of the intervention were evaluated using a multiple probe across participants design with 3 weekly follow-up probes, 3 weeks after the intervention ended. All participants showed improvement in active participation, imitation and either intentional vocalizations or spontaneous functional utterances. These results were generally maintained at follow-up. This low-intensity version of the ESDM would seem effective for use in real-world preschool environments.

Characterising the Early Presentation of Motor Difficulties in Autistic Children.

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 < 0.001). Early motor delays or concerns may assist identifying individuals who will likely benefit from early ongoing developmental monitoring and early support.

A Survey of Autistic Adults from New Zealand on the Autism Diagnostic Process During Adolescence and Adulthood.

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.

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

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

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.

The effects of JASPER intervention for children with autism spectrum disorder: A systematic review.

Naturalistic developmental behavioural interventions are promising approaches for young children with, or suspected of having, autism spectrum disorder. Joint attention, symbolic play, engagement and regulation intervention (JASPER) is a well-researched naturalistic developmental behavioural intervention but, to date, no reviews have specifically evaluated its effects. This systematic literature review examined the effects of JASPER intervention and its components on child, parent and educator outcomes. Of the 96 articles screened, 19 were eligible for inclusion in the review. Most studies found that children who received JASPER intervention showed significantly greater improvements in at least one outcome related to child joint attention, joint engagement, play skills and language skills compared to the comparison group. Implementation outcomes for parents and educators were generally positive. There were no consistent predictors or mediators of treatment effects. None of the studies met all of the quality indicators outlined by the Council of Exceptional Children, and the majority of outcome measures were classified as proximal. Overall, JASPER intervention appears promising in improving child outcomes directly targeted during treatment. More research is needed to determine whether it is also effective in improving a wider range of outcomes for children with autism spectrum disorder.Lay abstractInterventions which are delivered in natural contexts and use both developmental and behavioural techniques may be helpful for children with, or suspected of having, autism spectrum disorder. Joint attention, symbolic play, engagement and regulation (JASPER) is a type of intervention, which falls under this category. Although several studies have examined the effects of JASPER, this has not yet been summarised in a review. This systematic literature review examined the effects of JASPER intervention, and the techniques that make up JASPER, on child, parent and educator outcomes. We screened 96 articles and, of these, 19 were included in the review. Most studies found that children who received JASPER intervention showed significantly greater improvements in at least one outcome related to child joint attention, joint engagement, play skills, and language skills compared to children who did not receive JASPER intervention. Parents and educators were mostly able to use the JASPER techniques. There were no consistent child, parent, teacher or treatment characteristics that influenced the effects of the JASPER intervention. None of the studies met all of the indicators of being a good quality study outlined by the Council of Exceptional Children. Overall, JASPER intervention appears promising in improving child outcomes directly targeted during treatment. More research is needed to determine whether it is also effective in improving a wider range of outcomes for children with autism spectrum disorder.