Behavioral characteristics of toddlers later identified with an autism diagnosis, ADHD symptoms, or combined autism and ADHD symptoms.

BACKGROUND: Autism commonly co-occurs with attention-deficit/hyperactivity disorder (ADHD), but less is known regarding how ADHD symptoms impact the early presentation of autism. This study examined early behavioral characteristics of a community sample of toddlers later identified with autism diagnosis, ADHD symptoms, combined autism and ADHD symptoms, or neither condition. METHODS: Participants were 506 toddlers who were part of a longitudinal study of children's behavioral development. Parents completed questionnaires about their children's behavior at two time points. Four groups were identified based on study measures or medical record: autism diagnosis (n = 45), elevated ADHD symptoms (n = 70), autism and ADHD symptoms (n = 30), or neurotypical development (n = 361). Relationships between early parent report of autism- and ADHD-related behaviors, social-emotional and behavioral functioning, and caregiver experience and subsequent group designation were evaluated with adjusted linear regression models controlling for sex. RESULTS: Significant group differences were found in measures of autism-related behaviors, ADHD-related behaviors, externalizing and internalizing behaviors, and parent support needs (p < .0001). Pairwise comparisons indicated toddlers later identified with combined autism diagnosis and ADHD symptoms had higher levels of autism-related behaviors, externalizing and internalizing behaviors, and autism-related parent support needs compared to the other groups. Toddlers with subsequent elevated ADHD symptoms or combined autism diagnosis and ADHD symptoms exhibited similar levels of ADHD-related behaviors, while both groups displayed more ADHD-related behaviors than toddlers subsequently identified with autism or those with neither condition. CONCLUSIONS: In this community sample, toddlers for whom combined autism diagnosis and ADHD symptoms were subsequently identified showed a distinct presentation characterized by higher early autism-related behaviors, broader behavioral concerns, and higher parent support needs. Presence of ADHD symptoms (alone or in combination with autism) was associated with higher parent-reported ADHD-related behaviors during toddlerhood. Results indicate that ADHD-related behaviors are manifest by toddlerhood, supporting screening for both autism and ADHD during early childhood.

Cognitive Disengagement Syndrome in Young Autistic Children, Children with ADHD, and Autistic Children with ADHD.

OBJECTIVE: Cognitive Disengagement Syndrome (CDS; previously called Sluggish Cognitive Tempo) refers to a constellation of cognitive and motor behaviors characterized by a predisposition toward mind wandering (cognitive subdomain) and slowed motor behavior (hypoactive). While there are a number of studies linking CDS traits to greater global impairment in children with attention-deficit/hyperactivity disorder (ADHD) and autistic children, there are few studies examining the prevalence and impact of CDS traits in autistic children with co-occurring ADHD (Autistic+ADHD). The current study explored CDS traits in autistic children with and without co-occurring ADHD, children with ADHD, and neurotypical children. METHODS: Participants were 196 children between 3- and 7-years-of-age comprising four groups: Neurotypical (N = 44), ADHD (N = 51), Autistic (N = 55), and Autistic+ADHD (N = 46). CDS traits, social and communication skills, repetitive behaviors, and sensory processing were all assessed via parent report. RESULTS: Children diagnosed with ADHD, autistic children, and Autistic+ADHD children exhibited similar levels of overall CDS traits. However, when explored separately, Autistic+ADHD children had higher cognitive CDS trait scores compared to children with ADHD alone. Both overall CDS traits and the cognitive subdomain were associated with greater social difficulties, particularly social withdrawal, higher levels of repetitive behaviors, and more sensory sensitivities, regardless of diagnosis. CONCLUSIONS: Findings suggest that CDS traits may be an additional factor directly impact functional outcomes in both autistic and ADHD children. As such, clinicians should be assessing CDS traits in addition to other clinical domains associated with ADHD and autism when developing intervention plans for young neurodiverse children.

Complexity analysis of head movements in autistic toddlers.

BACKGROUND: Early differences in sensorimotor functioning have been documented in young autistic children and infants who are later diagnosed with autism. Previous research has demonstrated that autistic toddlers exhibit more frequent head movement when viewing dynamic audiovisual stimuli, compared to neurotypical toddlers. To further explore this behavioral characteristic, in this study, computer vision (CV) analysis was used to measure several aspects of head movement dynamics of autistic and neurotypical toddlers while they watched a set of brief movies with social and nonsocial content presented on a tablet. METHODS: Data were collected from 457 toddlers, 17-36 months old, during their well-child visit to four pediatric primary care clinics. Forty-one toddlers were subsequently diagnosed with autism. An application (app) displayed several brief movies on a tablet, and the toddlers watched these movies while sitting on their caregiver's lap. The front-facing camera in the tablet recorded the toddlers' behavioral responses. CV was used to measure the participants' head movement rate, movement acceleration, and complexity using multiscale entropy. RESULTS: Autistic toddlers exhibited significantly higher rate, acceleration, and complexity in their head movements while watching the movies compared to neurotypical toddlers, regardless of the type of movie content (social vs. nonsocial). The combined features of head movement acceleration and complexity reliably distinguished the autistic and neurotypical toddlers. CONCLUSIONS: Autistic toddlers exhibit differences in their head movement dynamics when viewing audiovisual stimuli. Higher complexity of their head movements suggests that their movements were less predictable and less stable compared to neurotypical toddlers. CV offers a scalable means of detecting subtle differences in head movement dynamics, which may be helpful in identifying early behaviors associated with autism and providing insight into the nature of sensorimotor differences associated with autism.

Early intervention for very young children with or at high likelihood for autism spectrum disorder: An overview of reviews.

AIM: To identify which interventions are supported by evidence and the quality of that evidence in very young children with or at high likelihood for autism spectrum disorder (ASD) to improve child outcomes. METHOD: We conducted an overview of reviews to synthesize early intervention literature for very young children with or at high likelihood for ASD. Cochrane guidance on how to perform overviews of reviews was followed. Comprehensive searches of databases were conducted for systematic reviews and meta-analyses between January 2009 and December 2020. Review data were extracted and summarized and methodological quality was assessed. Primary randomized controlled trial evidence was summarized and risk of bias assessed. This overview of reviews was not registered. RESULTS: From 762 records, 78 full texts were reviewed and seven systematic reviews and meta-analyses with 63 unique studies were identified. Several interventional approaches (naturalistic developmental behavioral intervention, and developmental and behavioral interventions) improved child developmental outcomes. Heterogeneity in design, intervention and control group, dose, delivery agent, and measurement approach was noted. Inconsistent methodological quality and potential biases were identified. INTERPRETATION: While many early interventional approaches have an impact on child outcomes, study heterogeneity and quality had an impact on our ability to draw firm conclusions regarding which treatments are most effective. Advances in trial methodology and design, and increasing attention to mitigating measurement bias, will advance the quality of the ASD early intervention evidence base. WHAT THIS PAPER ADDS: Naturalistic developmental behavioral interventions, as well as developmental and behavioral interventions, improve child outcomes in autism spectrum disorder (ASD). If only randomized controlled trials are considered, guidelines for early intensive behavioral intervention in younger children should be revisited. The greatest intervention impacts were on proximal, intervention-specific outcomes. Inadequacies in the quality of the early ASD intervention evidence base were observed.

A scalable computational approach to assessing response to name in toddlers with autism.

BACKGROUND: This study is part of a larger research program focused on developing objective, scalable tools for digital behavioral phenotyping. We evaluated whether a digital app delivered on a smartphone or tablet using computer vision analysis (CVA) can elicit and accurately measure one of the most common early autism symptoms, namely failure to respond to a name call. METHODS: During a pediatric primary care well-child visit, 910 toddlers, 17-37 months old, were administered an app on an iPhone or iPad consisting of brief movies during which the child's name was called three times by an examiner standing behind them. Thirty-seven toddlers were subsequently diagnosed with autism spectrum disorder (ASD). Name calls and children's behavior were recorded by the camera embedded in the device, and children's head turns were coded by both CVA and a human. RESULTS: CVA coding of response to name was found to be comparable to human coding. Based on CVA, children with ASD responded to their name significantly less frequently than children without ASD. CVA also revealed that children with ASD who did orient to their name exhibited a longer latency before turning their head. Combining information about both the frequency and the delay in response to name improved the ability to distinguish toddlers with and without ASD. CONCLUSIONS: A digital app delivered on an iPhone or iPad in real-world settings using computer vision analysis to quantify behavior can reliably detect a key early autism symptom-failure to respond to name. Moreover, the higher resolution offered by CVA identified a delay in head turn in toddlers with ASD who did respond to their name. Digital phenotyping is a promising methodology for early assessment of ASD symptoms.

Traditional Healers and Mental Health in Nepal: A Scoping Review.

Despite extensive ethnographic and qualitative research on traditional healers in Nepal, the role of traditional healers in relation to mental health has not been synthesized. We focused on the following clinically based research question, "What are the processes by which Nepali traditional healers address mental well-being?" We adopted a scoping review methodology to maximize the available literature base and conducted a modified thematic analysis rooted in grounded theory, ethnography, and phenomenology. We searched five databases using terms related to traditional healers and mental health. We contacted key authors and reviewed references for additional literature. Our scoping review yielded 86 eligible studies, 65 of which relied solely on classical qualitative study designs. The reviewed literature suggests that traditional healers use a wide range of interventions that utilize magico-religious explanatory models to invoke symbolic transference, manipulation of local illness narratives, roles, and relationships, cognitive restructuring, meaning-making, and catharsis. Traditional healers' perceived impact appears greatest for mild to moderate forms of psychological distress. However, the methodological and sample heterogeneity preclude uniform conclusions about traditional healing. Further research should employ methods which are both empirically sound and culturally adapted to explore the role of traditional healers in mental health.

A Phase II Randomized Clinical Trial of the Safety and Efficacy of Intravenous Umbilical Cord Blood Infusion for Treatment of Children with Autism Spectrum Disorder.

OBJECTIVE: To evaluate whether umbilical cord blood (CB) infusion is safe and associated with improved social and communication abilities in children with autism spectrum disorder (ASD). STUDY DESIGN: This prospective, randomized, placebo-controlled, double-blind study included 180 children with ASD, aged 2-7 years, who received a single intravenous autologous (n = 56) or allogeneic (n = 63) CB infusion vs placebo (n = 61) and were evaluated at 6 months postinfusion. RESULTS: CB infusion was safe and well tolerated. Analysis of the entire sample showed no evidence that CB was associated with improvements in the primary outcome, social communication (Vineland Adaptive Behavior Scales-3 [VABS-3] Socialization Domain), or the secondary outcomes, autism symptoms (Pervasive Developmental Disorder Behavior Inventory) and vocabulary (Expressive One-Word Picture Vocabulary Test). There was also no overall evidence of differential effects by type of CB infused. In a subanalysis of children without intellectual disability (ID), allogeneic, but not autologous, CB was associated with improvement in a larger percentage of children on the clinician-rated Clinical Global Impression-Improvement scale, but the OR for improvement was not significant. Children without ID treated with CB showed significant improvements in communication skills (VABS-3 Communication Domain), and exploratory measures including attention to toys and sustained attention (eye-tracking) and increased alpha and beta electroencephalographic power. CONCLUSIONS: Overall, a single infusion of CB was not associated with improved socialization skills or reduced autism symptoms. More research is warranted to determine whether CB infusion is an effective treatment for some children with ASD.

Providing early detection and early intervention for autism spectrum disorder in South Africa: stakeholder perspectives from the Western Cape province.

We set out to examine key stakeholder perspectives on early detection and intervention for autism spectrum disorder (ASD) in South Africa. Early detection and intervention improves child and family outcomes and lessens long-term costs. We focused on stakeholders in the Western Cape province, one of the better-resourced in terms of healthcare. Eight senior management level stakeholders, two each from government's Health, Education, and Social Development, and the non-profit sector were identified using purposive sampling. In-depth interviews focused on key implementation- related themes. The National Integrated Early Childhood Development Policy was the most relevant to early detection and intervention. This policy, however, is not ASD specific. This lack of specificity is in keeping with an emerging theme: ASD was only seen within the context of other developmental disabilities, particularly by Health and Social Development. Specific ASD early detection and intervention may not currently align with Health and Social Development departmental goals. These departments are primarily responsible for identifying and providing services and financial support to young children with ASD. Increased ASD knowledge and local South African statistics on prevalence, burden and associated costs may alter this approach. At this time, ASD early intervention may be more closely aligned with Education department goals.

Child mental health and maternal depression history in Pakistan.

PURPOSE: We address the significant gaps in knowledge of prevalence and correlates of child mental health (CMH) problems outside of high income countries. We describe the prevalence of CMH problems and their correlates with a focus on the association with maternal depression in a sample of seven-year-old children in rural Pakistan. METHODS: This study was nested in a long-term follow-up of a perinatal depression intervention together with a reference group of non-depressed women, yielding a population representative sample. The Total Difficulties (TD) and component scores of the Strength and Difficulties Questionnaire (SDQ) were used to measure emotional and behavioral difficulties. RESULTS: The mean SDQ TD score was 10.6 (standard deviation = 8.3), with 12.5 % of children categorized as "abnormal" using standard cutoffs. Boys had a roughly 1 point higher (worse) SDQ TD score than girls (p value = 0.04). Children of mothers who were depressed prenatally as well as currently had SDQ TD scores 2.87 points higher than children whose mothers were not depressed at either time point (p value < 0.01). This association was stronger for boys. There was no evidence of elevated SDQ TD score among children whose mothers were depressed only prenatally or only currently. Some deviations from this pattern were observed with specific components of the SDQ. CONCLUSIONS: In this low resource, South Asian setting, we found evidence of elevated levels of emotional and behavioral problems, highlighting the need for effective interventions. Given the strong association of CMH with maternal depression, any intervention efforts should give strong consideration to maternal mental health.

Prevalence of bias against neurodivergence-related terms in artificial intelligence language models.

Given the increasing role of artificial intelligence (AI) in many decision-making processes, we investigate the presence of AI bias towards terms related to a range of neurodivergent conditions, including autism, ADHD, schizophrenia, and obsessive-compulsive disorder (OCD). We use 11 different language model encoders to test the degree to which words related to neurodiversity are associated with groups of words related to danger, disease, badness, and other negative concepts. For each group of words tested, we report the mean strength of association (Word Embedding Association Test [WEAT] score) averaged over all encoders and find generally high levels of bias. Additionally, we show that bias occurs even when testing words associated with autistic or neurodivergent strengths. For example, embedders had a negative average association between words related to autism and words related to honesty, despite honesty being considered a common strength of autistic individuals. Finally, we introduce a sentence similarity ratio test and demonstrate that many sentences describing types of disabilities, for example, "I have autism" or "I have epilepsy," have even stronger negative associations than control sentences such as "I am a bank robber."

Brief Report: Relationships Between Caregiver-Reported Externalizing and Internalizing Behaviors and the Modified Checklist for Autism in Toddlers.

PURPOSE: Early detection and intervention are associated with improved outcomes for autistic children. Thus, it is important to understand factors influencing early screening tools designed to detect autism. This study examined the relationship between caregiver-reported emotional and behavioral symptoms and children's scores on a commonly used autism screening questionnaire, the Modified Checklist for Autism in Toddlers-Revised with Follow-Up (M-CHAT-R/F). METHODS: Toddlers were recruited from four primary care clinics between 2018 and 2021. Their caregivers completed the M-CHAT-R/F as well as the Child Behavior Checklist (CBCL), a well-validated, normed measure of emotional and behavioral functioning. Correlational and group analyses were evaluated to examine relationships between CBCL scales and M-CHAT-R/F scores. RESULTS: 1765 toddlers were recruited for the study. CBCL scores for the internalizing, externalizing, autism, ADHD, and anxiety scales were all modestly positively correlated with M-CHAT-R/F scores. Compared to toddlers with elevated autism scale scores only, toddlers with elevations in both autism and ADHD/externalizing scales had higher M-CHAT-R/F scores. In contrast, no significant difference in scores were found between toddlers with elevated autism scale scores only compared to those with elevated scores on both autism and internalizing scales. CONCLUSION: Findings suggest that, for children with elevated autism behaviors, the presence of externalizing symptoms, including ADHD-related concerns, is associated with elevated scores on the M-CHAT-R/F. In contrast, internalizing symptoms did not show an association with elevated M-CHAT-R/F scores among toddlers with elevated autism-related behaviors. Interpretation of the M-CHAT-R/F should include consideration of co-occurring psychiatric conditions, especially externalizing conditions such as ADHD.

Autism Caregiver Coaching in Africa (ACACIA): Protocol for a type 1-hybrid effectiveness-implementation trial.

BACKGROUND: While early autism intervention can significantly improve outcomes, gaps in implementation exist globally. These gaps are clearest in Africa, where forty percent of the world's children will live by 2050. Task-sharing early intervention to non-specialists is a key implementation strategy, given the lack of specialists in Africa. Naturalistic Developmental Behavioral Interventions (NDBI) are a class of early autism intervention that can be delivered by caregivers. As a foundational step to address the early autism intervention gap, we adapted a non-specialist delivered caregiver coaching NDBI for the South African context, and pre-piloted this cascaded task-sharing approach in an existing system of care. OBJECTIVES: First, we will test the effectiveness of the caregiver coaching NDBI compared to usual care. Second, we will describe coaching implementation factors within the Western Cape Department of Education in South Africa. METHODS: This is a type 1 effectiveness-implementation hybrid design; assessor-blinded, group randomized controlled trial. Participants include 150 autistic children (18-72 months) and their caregivers who live in Cape Town, South Africa, and those involved in intervention implementation. Early Childhood Development practitioners, employed by the Department of Education, will deliver 12, one hour, coaching sessions to the intervention group. The control group will receive usual care. Distal co-primary outcomes include the Communication Domain Standard Score (Vineland Adaptive Behavior Scales, Third Edition) and the Language and Communication Developmental Quotient (Griffiths Scales of Child Development, Third Edition). Proximal secondary outcome include caregiver strategies measured by the sum of five items from the Joint Engagement Rating Inventory. We will describe key implementation determinants. RESULTS: Participant enrolment started in April 2023. Estimated primary completion date is March 2027. CONCLUSION: The ACACIA trial will determine whether a cascaded task-sharing intervention delivered in an educational setting leads to meaningful improvements in communication abilities of autistic children, and identify implementation barriers and facilitators. TRIAL REGISTRATION: NCT05551728 in Clinical Trial Registry (https://clinicaltrials.gov).

Identification of provider characteristics influencing prescription of analgesics: a systematic literature review.

PURPOSE: Pain is a comorbid and aggravating symptom that in many conditions can be perceived differently and should therefore be managed accordingly. Numerous factors, both social and cultural, are thought to influence the analgesic prescription. However, elucidation of such areas is limited. We therefore conducted a systematic literature review to test the hypothesis that variations in provider characteristics predict the prescription of pain medication. METHODS: A MEDLINE and PsycINFO database search from 1960 to 2009 was conducted using the search terms of "pain" or "pain treatment" along with culture, ethnicity, race, minority, gender/sex, knowledge, attitudes, physician-patient relationship, stereotype, and physician practices. Twelve original research articles based on predefined inclusion criteria were identified and analyzed to test the hypothesis of provider characteristics influencing analgesics prescription. RESULTS: Of the 12 studies, 11 were cross-sectional in design, and 10 used a survey instrument or clinical vignettes to measure different pain management responses. A randomized sampling methodology was used in 5 of the studies. The majority of providers were male (64.9% in 8 studies), white (73.5% in 5 studies), internal medicine physicians (37.4% in 11 studies), and located in the United States (75% across all 12 studies). Ten studies identified at least one provider characteristic that influenced prescription practices; age, level of experience, as well as sex were listed most frequently as contributing factors. The interplay of the sex of the provider and patient characteristics were found to be important variables in pain management. CONCLUSIONS: Our systematic review of existing literature highlights that provider's age, sex, experience, specialty, and the interplay between provider and patient characteristics are important variables in pain management. However, generalizations relating to these findings are limited by the heterogeneity of the studies and the paucity of literature in this field.

Eye-tracking measures of social versus nonsocial attention are related to level of social engagement during naturalistic caregiver-child interactions in autistic children.

Eye-tracking (ET) measures indexing social attention have been proposed as sensitive measures related to autism, but less is known about the relationship between social and nonsocial attention and naturalistic measures of social engagement and whether sex moderates this relationship. This study investigated ET measures of social attention as predictors of social engagement during a naturalistic caregiver-child interaction (CCI). Participants included 132, 2-7-year-old autistic children (77% male) and their caregivers. Participants engaged in a CCI and an ET task in which they viewed a video of an actor making dyadic bids toward the child with toys in the background. Pearson correlations and multiple regression analyzes revealed that ET measures correlated with social engagement behaviors, including degree of attention to the caregiver and objects, joint engagement with the caregiver, and language-based joint engagement. Children who spent more time looking at toys were more likely to be unengaged during social interaction. Those who spent more time looking at the actor's mouth were more likely to engage in coordinated play with and without language. Sex moderated the relationship between time looking at toys and unengagement during play; males who spent more time looking at toys spent more time unengaged during play, whereas females who spent more time looking at toys spent less time unengaged during play. Overall, ET measures of social and nonsocial attention correlated with the level of social engagement during naturalistic play, with some sex differences. Eye-tracking measures that predict interaction patterns may provide insight into promoting social engagement between caregivers and their autistic children and can inform outcome monitoring and intervention development.

Conducting caregiver focus groups on autism in the context of an international research collaboration: Logistical and methodological lessons learned in South Africa.

LAY ABSTRACT: Most of the autism research to date has been conducted in high-income countries, with children and families typically from White, upper-middle-income backgrounds. However, we know there are significant inequalities that exist which influence how autistic individuals from diverse, underserved communities can access services they need. As many of these individuals have not been included in the majority of autism research to date, there is much we do not know about these individuals' life experiences, which are critically needed to better inform the development and implementation of care for families from historically underrepresented groups. In this article, we describe the research process we took to conduct focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. We specifically describe the lessons we learned in implementing these focus groups and provide recommendations aimed at how to best reduce logistical and methodological challenges moving forward to improve research conducted in similar low-resource contexts.

Automated Video Tracking of Autistic Children's Movement During Caregiver-Child Interaction: An Exploratory Study.

Objective, quantitative measures of caregiver-child interaction during play are needed to complement caregiver or examiner ratings for clinical assessment and tracking intervention responses. In this exploratory study, we examined the feasibility of using automated video tracking, Noldus EthoVision XT, to measure 159 2-to-7-year-old autistic children's patterns of movement during play-based, caregiver-child interactions and examined their associations with standard clinical measures and human observational coding of caregiver-child joint engagement. Results revealed that autistic children who exhibited higher durations and velocity of movement were, on average, younger, had lower cognitive abilities, greater autism-related features, spent less time attending to the caregiver, and showed lower levels of joint engagement. After adjusting for age and nonverbal cognitive abilities, we found that children who remained in close proximity to their caregiver were more likely to engage in joint engagement that required support from the caregiver. These findings suggest that video tracking offers promise as a scalable, quantitative, and relevant measure of autism-related behaviors.

Improving access to early intervention for autism - findings from a proof-of-principle cascaded task-sharing naturalistic developmental behavioural intervention in South Africa.

Background Despite the high number of children living with neurodevelopmental disabilities in sub-Saharan Africa, access to early intervention is almost non-existent. It is therefore important to develop feasible, scalable early autism intervention that can be integrated into systems of care. While Naturalistic Developmental Behavioural Intervention (NDBI) has emerged as an evidence-based intervention approach, implementation gaps exist globally, and task-sharing approaches may address access gaps. In this South African proof-of-principle pilot study, we set out to answer two questions about a 12-session cascaded task-sharing NDBI - whether the approach could be delivered with fidelity, and whether we could identify signals of change in child and caregiver outcomes. Methods We utilized a single-arm pre-post design. Fidelity (non-specialists, caregivers), caregiver outcomes (stress, sense of competence), and child outcomes (developmental, adaptive) were measured at baseline (T1) and follow-up (T2). Ten caregiver-child dyads and four non-specialists participated. Pre-to-post summary statistics were presented alongside individual trajectories. Non-parametric Wilcoxon signed rank test for paired samples was used to compare group medians between T1 and T2. Results Caregiver implementation fidelity increased in 10/10 participants. Non-specialists demonstrated a significant increase in coaching fidelity (increases in 7/10 dyads). Significant gains were seen on two Griffiths-III subscales (Language/Communication - 9/10 improved, Foundations of Learning - 10/10 improved) and on the General Developmental Quotient (9/10 improved). Significant gains were also seen on two Vineland Adaptive Behaviour Scales (Third Edition) subscales (Communication - 9/10 improved, Socialization - 6/10 improved) and in the Adaptive Behaviour Standard Score (9/10 improved). Caregiver sense of competence improved in 7/10 caregivers and caregiver stress in 6/10 caregivers. Conclusions This proof-of-principle pilot study of the first cascaded task-sharing NDBI in Sub-Saharan Africa provided fidelity and intervention outcome data which supported the potential of such approaches in low-resource contexts. Larger studies are needed to expand on the evidence-base and answer questions on intervention effectiveness and implementation outcomes.

Improving access to early intervention for autism: findings from a proof-of-principle cascaded task-sharing naturalistic developmental behavioural intervention in South Africa.

BACKGROUND: Despite the high number of children living with neurodevelopmental disabilities in sub-Saharan Africa, access to early intervention is almost non-existent. It is therefore important to develop feasible, scalable early autism intervention that can be integrated into systems of care. While Naturalistic Developmental Behavioural Intervention (NDBI) has emerged as an evidence-based intervention approach, implementation gaps exist globally, and task-sharing approaches may address access gaps. In this South African proof-of-principle pilot study, we set out to answer two questions about a 12-session cascaded task-sharing NDBI-whether the approach could be delivered with fidelity, and whether we could identify signals of change in child and caregiver outcomes. METHODS: We utilized a single-arm pre-post design. Fidelity (non-specialists, caregivers), caregiver outcomes (stress, sense of competence), and child outcomes (developmental, adaptive) were measured at baseline (T1) and follow-up (T2). Ten caregiver-child dyads and four non-specialists participated. Pre-to-post summary statistics were presented alongside individual trajectories. Non-parametric Wilcoxon signed rank test for paired samples was used to compare group medians between T1 and T2. RESULTS: Caregiver implementation fidelity increased in 10/10 participants. Non-specialists demonstrated a significant increase in coaching fidelity (increases in 7/10 dyads). Significant gains were seen on two Griffiths-III subscales (Language/Communication-9/10 improved, Foundations of Learning-10/10 improved) and on the General Developmental Quotient (9/10 improved). Significant gains were also seen on two Vineland Adaptive Behaviour Scales (Third Edition) subscales (Communication-9/10 improved, Socialization-6/10 improved) and in the Adaptive Behaviour Standard Score (9/10 improved). Caregiver sense of competence improved in 7/10 caregivers and caregiver stress in 6/10 caregivers. CONCLUSIONS: This proof-of-principle pilot study of the first cascaded task-sharing NDBI in Sub-Saharan Africa provided fidelity and intervention outcome data which supported the potential of such approaches in low-resource contexts. Larger studies are needed to expand on the evidence-base and answer questions on intervention effectiveness and implementation outcomes.

Autism Caregiver Coaching in Africa (ACACIA): Protocol for a type 1-hybrid effectiveness-implementation trial.

Background: While early autism intervention can significantly improve outcomes, gaps in implementation exist globally. These gaps are clearest in Africa, where forty percent of the world's children will live by 2050. Task-sharing early intervention to non-specialists is a key implementation strategy, given the lack of specialists in Africa. Naturalistic Developmental Behavioral Interventions (NDBI) are a class of early autism intervention that can be delivered by caregivers. As a foundational step to address the early autism intervention gap, we adapted a non-specialist delivered caregiver coaching NDBI for the South African context, and pre-piloted this cascaded task-sharing approach in an existing system of care. Objectives: First, we will test the effectiveness of the caregiver coaching NDBI compared to usual care. Second, we will describe coaching implementation factors within the Western Cape Department of Education in South Africa. Methods: This is a type 1 effectiveness-implementation hybrid design; assessor-blinded, group randomized controlled trial. Participants include 150 autistic children (18-72 months) and their caregivers who live in Cape Town, South Africa, and those involved in intervention implementation. Early Childhood Development practitioners, employed by the Department of Education, will deliver 12, one hour, coaching sessions to the intervention group. The control group will receive usual care. Distal co-primary outcomes include the Communication Domain Standard Score (Vineland Adaptive Behavior Scales, Third Edition) and the Language and Communication Developmental Quotient (Griffiths Scales of Child Development, Third Edition). Proximal secondary outcome include caregiver strategies measured by the sum of five items from the Joint Engagement Rating Inventory. We will describe key implementation determinants. Results: Participant enrolment started in April 2023. Estimated primary completion date is March 2027. Conclusion: The ACACIA trial will determine whether a cascaded task-sharing intervention delivered in an educational setting leads to meaningful improvements in communication abilities of autistic children, and identify implementation barriers and facilitators.

Early detection of autism using digital behavioral phenotyping.

Early detection of autism, a neurodevelopmental condition associated with challenges in social communication, ensures timely access to intervention. Autism screening questionnaires have been shown to have lower accuracy when used in real-world settings, such as primary care, as compared to research studies, particularly for children of color and girls. Here we report findings from a multiclinic, prospective study assessing the accuracy of an autism screening digital application (app) administered during a pediatric well-child visit to 475 (17-36 months old) children (269 boys and 206 girls), of which 49 were diagnosed with autism and 98 were diagnosed with developmental delay without autism. The app displayed stimuli that elicited behavioral signs of autism, quantified using computer vision and machine learning. An algorithm combining multiple digital phenotypes showed high diagnostic accuracy with the area under the receiver operating characteristic curve = 0.90, sensitivity = 87.8%, specificity = 80.8%, negative predictive value = 97.8% and positive predictive value = 40.6%. The algorithm had similar sensitivity performance across subgroups as defined by sex, race and ethnicity. These results demonstrate the potential for digital phenotyping to provide an objective, scalable approach to autism screening in real-world settings. Moreover, combining results from digital phenotyping and caregiver questionnaires may increase autism screening accuracy and help reduce disparities in access to diagnosis and intervention.