Effectiveness of a parent-mediated intervention for toddlers with autism spectrum disorder: Evidence from a large community implementation

Recent efforts have focused on developing and evaluating early intervention for toddlers with probable or emerging autism spectrum disorder. Parent-mediated approaches have gained traction, with mounting evidence of efficacy, but a research-to-practice gap exists, and community effectiveness remains to be firmly established. We report outcomes of a parent-mediated toddler intervention delivered through a research-community partnership, using a community-partnered participatory framework. Data were available for 179 of 183 toddler-parent dyads receiving Social ABCs parent coaching (mean toddler age: 25.18 months; range, 14–34 months). Of these, 89.4% completed the 12-week program and 70.6% returned for 3-month follow-up assessment. Parents attained implementation fidelity exceeding 75%, and toddlers made gains on proximal and distal measures of social communication. Parent fidelity was associated with toddlers’ responsivity at week 12, and responsivity predicted later language gains and reduced autism spectrum disorder symptoms. The roles of child, family, and system factors are discussed. Community delivery of an evidence-based parent-mediated intervention for toddlers with autism spectrum disorder is feasible and effective. Given resource efficiencies associated with parent-mediated approaches, findings bolster current efforts to promote earlier and more widespread access to intervention at the first signs of developmental concern. Lay abstract In an effort to increase access to intervention as early as possible for toddlers with autism spectrum disorder or signs thereof, many researchers have developed interventions that can be delivered by parents in their own homes. These parent-mediated approaches have gained a lot of research attention in recent years and have been found to be helpful in terms of parent and toddler learning. Several studies have used a rigorous research design (a randomized controlled trial) to show that parent-mediated intervention can work under ideal well-controlled conditions. To build on this evidence, we also need to examine whether parent-mediated interventions can be taught well through community service providers and delivered in more “real-world” conditions. This study used a research-community partnership to provide a parent-mediated intervention (called the Social ABCs) to 179 families (mean toddler age was 25 months; ranging from 14 to 34 months). Almost 90% of the families completed the 12-week program and 70% returned for a follow-up assessment 3 months later. Analyses showed that parents learned the strategies that were designed to help them support their toddlers’ development. Also, toddlers made gains in their language, communication, and social skills. Importantly, parents’ use of the strategies was related to toddlers’ skill gains, suggesting that the use of the strategies made a difference for the toddlers. Findings support the use of parent-mediated intervention in this very young age group and suggest that such intervention approaches should be made available for community delivery.

A prospective study of associations between early fearfulness and perceptual sensitivity and later restricted and repetitive behaviours in infants with typical and elevated likelihood of autism

Autism is diagnosed based on social and communication difficulties, restricted and repetitive behaviours and sensory anomalies. Existing evidence indicates that anxiety and atypical sensory features are associated with restricted and repetitive behaviours, but cannot clarify the order of emergence of these traits. This study uses data from a prospective longitudinal study of infants with and without a family history of autism ( N = 247; Elevated Likelihood N = 170 and Typical Likelihood N = 77). Longitudinal cross-lag models tested bidirectional pathways between parent-rated infant fear/shyness and perceptual sensitivity at 8, 14 and 24 months, and associations between these domains and parent-rated restricted and repetitive behaviours and social communication scores at 36 months. In addition to within-domain continuity, higher levels of fear/shyness at 14 months were associated with higher levels of perceptual sensitivity at 24 months. Higher levels of both fear/shyness and perceptual sensitivity at 24 months were associated with greater restricted and repetitive behaviours and social communication scores at 36 months. Results demonstrate the directionality of developmental pathways between fear/shyness and perceptual sensitivity in infancy and toddlerhood, but question theories that argue that these domains specifically underlie restricted and repetitive behaviours rather than autism. Identifying how early emerging anxiety and sensory behaviours relate to later autism is important for understanding pathways and developing targeted support for autistic children. Lay abstract Restricted interests and repetitive behaviours are central to the diagnosis of autism and can have profound effects on daily activities and quality of life. These challenges are also linked to other co-occurring conditions such as anxiety and sensory sensitivities. Here, we looked at whether early emerging signs of anxiety and sensory problems appear before symptoms of autism by studying infants with a family history of autism, as these infants are more likely to develop autism themselves. Studying infant siblings provides an opportunity for researchers to focus on early developmental markers of autism as these infants can be followed from birth. This study found that early infant signs of anxiety (e.g. fear/shyness) predicted later perceptual sensitivity, and those infants who scored higher on fear/shyness and sensitivity were more likely to experience more persistent repetitive behaviours, but also social and communication difficulties in toddlerhood. Early signs of anxiety and perceptual sensitivity may thus relate to both later social difficulties and repetitive behaviours. These findings support the importance of further research exploring the causal links between these domains in relation to autism, resulting in increased understanding of children who go onto develop autism in the future and guiding early interventions and supports.

Practice-driven research for statewide scale up: Implementation outcomes of the California Autism Professional Training and Information Network

Scaling up the use of evidence-based practice (EBP) for autism across service sectors and regions has presented a considerable challenge indicating a clear need for continued development. The California Autism Professional Training and Information Network (CAPTAIN) integrates implementation drivers into specific procedures and methodology as an implementation strategy to support statewide scale up. The current study was designed to evaluate the impact of CAPTAIN on provider-level outcomes including attitude toward, and knowledge, fidelity and use of autism EBPs, and overall classroom quality. Overall, results indicated variability across measures, with some significant differences between CAPTAIN-trained and non-CAPTAIN-trained providers. CAPTAIN-trained providers reported more openness to EBP. Significantly more CAPTAIN-trained direct service providers reported collecting fidelity of implementation data (χ2(2, N = 1515) = 10.95, p = 0.004), collecting student data (χ2(2, N = 1509) = 14.19, p = 0.001), and reported using their primary EBP with “most or all students” (χ2(2, N = 1514) = 11.41, p = 0.003) than providers not trained by CAPTAIN. In summary, these preliminary findings show promise for the efficacy of the CAPTAIN model to increase dissemination and implementation of EBP at the classroom level. Lay abstract Supporting use of evidence-based practice in public service programs for autistic individuals is critical. The California Autism Professional Training and Information Network (CAPTAIN) brings together best practices from intervention and implementation research to support scale up of autism services. The current study was designed to evaluate the impact of CAPTAIN on provider-level outcomes including attitude toward, knowledge, fidelity, and use of autism EBPs and overall classroom quality. Overall, results indicated variability across measures, with some significant differences between CAPTAIN-trained and non-CAPTAIN-trained providers. These preliminary findings show promise for the efficacy of the CAPTAIN model to increase dissemination and implementation of EBP at the classroom level.

Early life environmental factors associated with autism spectrum disorder symptoms in children at age 2 years: A birth cohort study

Mounting evidence finds that early life environmental factors increased the probability of autism spectrum disorder. We estimated prospective associations between early life environmental factors and autism spectrum disorder symptoms in children at the age of 2 years in a population-derived birth cohort, the Barwon Infant Study. Autism spectrum disorder symptoms at the age of 2 years strongly predicted autism spectrum disorder diagnosis by the age of 4 years (area under curve = 0.93; 95% CI (0.82, 1.00)). After adjusting for child’s sex and age at the time of behavioural assessment, markers of socioeconomic disadvantage, such as lower household income and lone parental status; maternal health factors, including younger maternal age, maternal pre-pregnancy body mass index, higher gestational weight gain and prenatal maternal stress; prenatal alcohol; environmental air pollutant exposures, including particulate matter < 2.5 µm at birth, child secondhand tobacco smoke exposure at 12 months, dampness/mould and home heating with oil, kerosene or diesel heaters at 2 years postnatal. Lower socioeconomic indexes for area, later birth order, higher maternal prenatal depression, and maternal smoking frequency had a dose-response relationship with autism spectrum disorder symptoms. Future studies on environmental factors and autism spectrum disorder should consider the reasons for the socioeconomic disparity and the combined impact of multiple environmental factors through common mechanistic pathways. Lay abstract Mounting evidence indicates the contribution of early life environmental factors in autism spectrum disorder. We aim to report the prospective associations between early life environmental factors and autism spectrum disorder symptoms in children at the age of 2 years in a population-derived birth cohort, the Barwon Infant Study. Autism spectrum disorder symptoms at the age of 2 years strongly predicted autism spectrum disorder diagnosis by the age of 4 years (area under curve = 0.93; 95% CI (0.82, 1.00)). After adjusting for child’s sex and age at the time of behavioural assessment, markers of socioeconomic disadvantage, such as lower household income and lone parental status; maternal health factors, including younger maternal age, maternal pre-pregnancy body mass index, higher gestational weight gain and prenatal maternal stress; maternal lifestyle factors, such as prenatal alcohol and environmental air pollutant exposures, including particulate matter < 2.5 μm at birth, child secondhand tobacco smoke at 12 months, dampness/mould and home heating with oil, kerosene or diesel heaters at 2 years postnatal. Lower socioeconomic indexes for area, later birth order, higher maternal prenatal depression and maternal smoking frequency had a dose-response relationship with autism spectrum disorder symptoms. Future studies on environmental factors and autism spectrum disorder should consider the reasons for the socioeconomic disparity and the combined impact of multiple environmental factors through common mechanistic pathways.

Healthy Relationships on the Autism Spectrum (HEARTS): A feasibility test of an online class co-designed and co-taught with autistic people

This study tested the feasibility and preliminary efficacy of a six-session online class on healthy relationships for autistic individuals ages 18–44 years old ( N = 55). The content of the Healthy Relationships on the Autism Spectrum class was informed by formative research with 25 autistic individuals, and developed collaboratively by two non-autistic professionals and seven autistic self-advocates. Fifty-five autistic people participated in Healthy Relationships on the Autism Spectrum and completed pre- and post-surveys. The study found that it was feasible to deliver Healthy Relationships on the Autism Spectrum online. Pairing an autistic and non-autistic person to co-teach was well-received. Participants decreased hostile automatic thoughts ( p < 0.05), involvement in dating abuse in intimate relationships ( p < 0.05), fight-or-flight response ( p < 0.05), and rejection sensitivity ( p < 0.001). Participants experienced improved flourishing ( p < 0.001), coping with rejection and jealousy ( p < 0.001), motivation to engage with others for socializing ( p < 0.05), self-compassion ( p < 0.05), and positive thinking ( p < 0.05). Scores on a measure of interpersonal competence did not change, and loneliness did not decrease. The majority of participants reported high satisfaction with the class. Healthy Relationships on the Autism Spectrum is a promising healthy relationships promotion class that should be evaluated through a randomized controlled trial. Lay abstract The Healthy Relationships on the Autism Spectrum class is unique because autistic people helped to develop it and co-taught it. It is an online, six-session class. The class was piloted in 2020–2021 with 55 autistic people who were ages 18–44 years old. This feasibility study found that most people who took the class liked it. Surveys filled out by the students before and after the class showed that they became less sensitive to rejection, used more positive thinking skills, and were more interested in being social. However, the class may not have made them feel less lonely. The team that invented the class is using the feedback to improve it. The class holds promise for improving the quality of friendships and dating relationships for autistic adults and should be tested further.

A method for defining the CORE of a psychosocial intervention to guide adaptation in practice: Reciprocal imitation teaching as a case example

Defining the central components of an intervention is critical for balancing fidelity with flexible implementation in both research settings and community practice. Implementation scientists distinguish an intervention’s essential components (thought to cause clinical change) and adaptable periphery (recommended, but not necessary). While implementing core components with fidelity may be essential for effectiveness, requiring fidelity to the adaptable periphery may stifle innovation critical for personalizing care and achieving successful community implementation. No systematic method exists for defining essential components a priori. We present the CORE (COmponents & Rationales for Effectiveness) Fidelity Method—a novel method for defining key components of evidence-based interventions—and apply it to a case example of reciprocal imitation teaching, a parent-implemented social communication intervention. The CORE Fidelity Method involves three steps: (1) gathering information from published and unpublished materials; (2) synthesizing information, including empirical and hypothesized causal explanations of component effectiveness; and (3) drafting a CORE model and ensuring its ongoing use in implementation efforts. Benefits of this method include: (1) ensuring alignment between intervention and fidelity materials; (2) clarifying the scope of the adaptable periphery to optimize implementation; and (3) hypothesizing—and later, empirically validating—the intervention’s active ingredients and their associated mechanisms of change. Lay abstract Interventions that support social communication include several “components,” or parts (e.g. strategies for working with children and families, targeting specific skills). Some of these components may be essential for the intervention to work, while others may be recommended or viewed as helpful but not necessary for the intervention to work. “Recommended” components are often described as “adaptable” because they can be changed to improve fit in different settings where interventions are offered or with different individuals. We need to understand which parts of an intervention are essential (and which are adaptable) when translating interventions from research to community settings, but it is challenging to do this before studying an intervention in the community. This article presents the CORE (COmponents & Rationales for Effectiveness) Fidelity Method—a new method for defining the essential components of evidence-based interventions—and applies it to a case example of Reciprocal Imitation Teaching, an intervention that parents are taught to deliver with their young children with social communication delays. The CORE Fidelity Method involves three steps: (1) gathering information from multiple sources; (2) integrating information from previous research and theory; and (3) drafting a CORE model for ongoing use. The benefits of using the CORE Fidelity Method may include: (1) improving consistency in intervention and research materials to help all providers emphasize the most important skills or strategies; (2) clarifying which parts of the intervention can be adapted; and (3) supporting future research that evaluates which intervention components work and how they work.

Sufficient sleep duration in autistic children and the role of physical activity

Emerging evidence suggests that physical activity may be associated with improved sleep in autistic children. We aimed to determine whether physical activity associated with sufficient sleep duration in children and whether this association was modified by reported autism spectrum disorder (ASD) status. We analyzed existing data of children 6–17 years old whose caregivers completed the 2018 National Survey of Children’s Health (nonautistic N = 20,845; ASD N = 681). Logistic regression determined whether physical activity (days active in the past week) associated with sufficient sleep duration. Physical activity-by-ASD interactions were included to determine whether the association differed for autistic children. Physical activity-by-ASD-by-sex and physical activity-by-ASD-by-age-group interactions were also modeled. Physical activity was associated with increased odds of sufficient sleep duration (e.g. 0 days vs 4–6 days: odds ratio (OR) = 1.85; 95% confidence interval (CI): 1.48–2.32). We did not observe an overall statistically significant interaction between physical activity and reported ASD status; however, the positive association between physical activity and sufficient sleep duration was weaker in autistic children, especially those with more severe ASD, female autistic children, and autistic children ages 6–12 years old. In conclusion, physical activity is a promising approach to improve sufficient sleep duration but with nuanced findings in autistic children. Lay abstract Higher levels of physical activity may be associated with improved sleep in children, but this relationship is still being determined, especially in autistic children. In this study, we used existing data from the 2018 National Survey of Children’s Health. Caregivers of children 6–17 years old, including caregivers of autistic children, completed a questionnaire that included questions about physical activity (days active in the past week) and sleep duration. We then determined if children were obtaining the recommended hours of sleep for their age (i.e. sufficient sleep). We found that higher physical activity levels were associated with sufficient sleep duration, but this finding was weaker in autistic children. In particular, this association was not observed in autistic children with more severe autism spectrum disorder, female autistic children, and autistic children 6–12 years old. In conclusion, physical activity is a promising approach to help children obtain sufficient sleep duration. However, more personalized approaches to improving sleep may be needed for certain groups of autistic children.

Implementation of a multi-family autism transition program in the high school setting

Transitioning Together is a multi-family intervention designed to support families of adolescents on the autism spectrum as they prepare for the transition to adulthood. Questions remain regarding its wide-scale adoption and implementation in real-world settings such as high schools. We examined student, teacher, and school-level facilitators and barriers to adopting and implementing Transitioning Together at 30 public high schools across three US states that were participating in the intervention arm of a larger randomized trial, which provided training and coaching for implementation of comprehensive evidence-based autism programming. Seventeen of the 30 schools adopted Transitioning Together. Community socioeconomic status and pre-existing quality of programming for family involvement and transition planning significantly predicted intervention adoption. Thirteen of the 17 schools that adopted Transitioning Together did so with a high level of fidelity (>90%). The areas of fidelity that schools struggled with most related to session structure, facilitating problem-solving and dialogue, and collecting feedback from families. Findings highlight struggles and successes with real-world adoption of the intervention in its current form. Future research is needed to further examine how to facilitate adoption across public high schools and/or other service systems, while maximizing effectiveness, as well as reach to historically underserved autism spectrum populations. Lay abstract Transitioning Together is an intervention that supports families of adolescents on the autism spectrum as they prepare for the transition to adulthood. While it has been delivered successfully and shown to result in positive outcomes for families in the university setting, questions remain about whether and how well it can be widely provided to families in real-world settings such as high schools. In this study, we analyzed predictors, facilitators, and barriers to providing Transitioning Together to families at 30 high schools across three US states, all of which received training from a team of researchers to deliver this intervention. Our findings highlight struggles and successes with real-world use of the intervention. Seventeen of the 30 schools were successful in providing Transitioning Together to families. Schools who had higher community socioeconomic status, higher quality family involvement, and higher quality transition planning programming before changing anything for this study were much more likely to provide this new intervention to families. Schools who used the intervention were mostly able to deliver it as designed and received positive feedback from families who participated. Common parts of the intervention that schools struggled with most included following the structure of the sessions, including group problem-solving and dialogue in the sessions, and collecting feedback from families. Future research is needed to learn how to make it even easier for public high schools and other service systems to provide this intervention to families, in a way that also maximizes its effectiveness and accessibility for historically underserved autism spectrum populations.

Iterative redesign of a caregiver-mediated intervention for use in educational settings

Teachers endorse disruptive behavior as a considerable concern for autistic students, which is compounded by the lack of adequate resources for behavioral intervention planning in the classroom. The RUBI program is an evidence-based, low-intensity manualized intervention, initially developed for parents of autistic children ages 3–14 and co-occurring disruptive behavior. Utilizing the Discover, Design/Build, Test (DDBT) framework, which combines user-centered design and implementation science, RUBI intervention content was collaboratively and iteratively redesigned with elementary school stakeholders (40 school staff from 28 schools) to ensure the feasibility, acceptability, and appropriateness of the redesigned intervention, RUBI in Educational Settings (RUBIES). Iterative quantitative and qualitative methods were conducted with stakeholders to identify targets for RUBI redesign. Conventional content analysis was used to code qualitative data and identify usability issues. Recommendations were provided for modifications to RUBI sessions to address the needs of the school context and end-users to develop RUBIES. Feasibility scores improved following the redesign. The use of the DDBT framework to redesign the RUBI intervention may promote greater usefulness and usability in school contexts. Lay abstract Teachers often report concerns about behavior challenges in their students with autism spectrum disorder (ASD) in the school setting. Furthermore, teachers often report that they do not have adequate training in how to manage these challenging behaviors effectively. The RUBI program is an intervention initially developed for parents of children with ASD and co-occurring challenging behavior in clinic settings. The present project used school staff input to systematically redesign RUBI to be used with educators in schools. School staff gave input at multiple stages of development to ensure the adapted intervention was appropriate to use in a school setting. Responses were coded and analyzed to identify strengths and weaknesses of the RUBI manual in schools and adaptations were made accordingly. Scores of how appropriate, possible, likable, and usable RUBI would be in schools rose after the intervention was redesigned. The redesigned RUBIES manual may give school staff the tools they need to manage disruptive behaviors. In addition, collaborating with providers over multiple stages to redesign established interventions for new contexts may be a promising way to help bring research tools to practice in the future.

The effectiveness of training community mental health therapists in an evidence-based intervention for ASD: Findings from a hybrid effectiveness-implementation trial in outpatient and school-based mental health services

An Individualized Mental Health Intervention for ASD (AIM HI) was developed in collaboration with community stakeholders for delivery in mental health services in response to therapist- and caregiver-identified need to improve services for children with autism spectrum disorder (ASD). Primary findings from a cluster randomized Hybrid Type 1 effectiveness-implementation trial conducted in publicly funded mental health programs demonstrated the effectiveness of AIM HI therapist training on child and caregiver outcomes. This study examined therapist outcomes and therapist experience as a moderator of training effects. Mental health programs were randomized to immediate AIM HI training or usual care. Therapists and child/caregiver clients were recruited from participating programs. Therapists in the AIM HI training condition received consultation for 6 months while delivering AIM HI. Differences between training conditions were examined using multilevel modeling. Therapists receiving AIM HI training were observed to use more extensive active teaching strategies with caregivers, engagement strategies with children, strategies promoting continuity of care, and had more structured sessions with more extensively pursued skill building. Therapist licensure moderated some training outcomes. The current study provides support for evidence-based practice implementation in usual care mental health services. Lay abstract Publicly funded mental health services play an important role in caring for school-age children with autism spectrum disorder (ASD); however, therapists report a lack of specialized ASD training, which families identity as a barrier in obtaining mental health services for their children. An Individualized Mental Health Intervention for ASD (AIM HI) was developed in collaboration with community stakeholders to respond to identified needs of children and community therapists. The current study examined the effects of therapist training in AIM HI on the changes in therapist practice, including therapists’ use of evidence-based intervention strategies in session. Data were collected from a study conducted in community outpatient and school based mental health programs randomly assigned to receive AIM HI therapist training or observation of routine care. Therapist and child clients were enrolled from participating programs. Therapists in AIM HI training received training and consultation for 6 months while delivering the AIM HI intervention to a participating client; therapists in usual care delivered routine care. Both groups of therapists video recorded psychotherapy sessions which were scored by trained raters. Differences between training groups were examined using multilevel modeling. Therapists trained in AIM HI were observed to use more extensive active teaching strategies with caregivers, engagement strategies with children, strategies promoting continuity of care, and had more structured sessions with more effective pursuit of caregiver and children skill teaching. Therapist licensure moderated some training outcomes.