We assessed parent stress and competence outcomes from participation in a randomized controlled trial of a modular behavioral intervention (Modular Approach for Young Autistic Children; MAYAC) compared to a treatment-as-usual comprehensive behavioral intervention (CBI). Throughout their participation, parents of military families were included in their child's treatment (e.g., identifying goals, learning strategies to support their child) and reported on their feelings of stress using the Parenting Stress Index-4, Short Form (PSI-4), as well as their feelings of satisfaction and efficacy as a parent on the Parenting Sense of Competence (PSOC) scale. A linear mixed model evaluated the differences in stress and competence from baseline to each assessment period through follow-up. There were no significant differences between groups in stress or competence ratings; however, there were within-group changes in both treatment arms over the course of the trial. In both groups, parent stress decreased, and competence increased over time, continuing to suggest that behavioral analytic intervention for young children with autism can promote positive parent outcomes. Trial Registration: ClinicalTrial.gov identifier: NCT04078061.
OBJECTIVE:The goal of this study is to construct a 16-week, 2-stage, adaptive intervention consisting of DTT (Discrete Trials Training, largely considered usual care for children with autism), JASP-EMT (a blended, naturalistic, developmental behavioral intervention involving JASPER [Joint Attention, Symbolic Play, Engagement and Regulation] and EMT [Enhanced Milieu Teaching]), and parent training (P) for improving spontaneous communicative utterances in school-aged, minimally verbal autistic children. Intervention was delivered both at school (DTT, JASP-EMT) and at home (P). This article reports results for the study's primary aim and a closely related secondary aim. METHOD:The study used a 2-stage, sequential, multiple-assignment randomized trial design. In stage 1 (weeks 1-6), 194 minimally verbal (<20 functional words), 5- to 8-year-old autistic children were randomized initially to DTT vs JASP-EMT (stage 1, weeks 0-6). Early vs slower response status was determined at the end of stage 1. In stage 2 (weeks 7-16), early responders were re-randomized to stay the course vs P, whereas slower responders were re-randomized to stay the course vs combined DTT+JASP-EMT). The primary aim was to test whether there was a difference between starting with DTT vs starting with JASP-EMT on average change in socially communicative utterances (SCU; primary outcome) from baseline to week 16. A secondary aim was to estimate which of the 8 prespecified interventions was most favorable (ie, the largest average SCU at week 16). The secondary outcomes were total number of novel words, joint engagement, play diversity, requesting, and joint attention gestures from independent blinded assessments. RESULTS:There was no evidence to reject the null hypothesis of no difference between starting with DTT or JASP-EMT on primary outcome (p = .41). The most favorable of the 8 interventions was the adaptive intervention, which starts with DTT, augments with P for early responders, and augments with JASP-EMT for slower responders. For this adaptive intervention, average change on SCU from baseline to week 16 for this intervention was estimated to be 7.68 (95% CI = 2.13-13.24). CONCLUSION:The results showed no difference in treatment starting with JASP-EMT or DTT, and the differences among the 8 adaptive interventions of the secondary aim were modest. Based on these results, reflections on next steps are discussed. PLAIN LANGUAGE SUMMARY:There is limited research about the optimal strategy for interventions to improve spoken language outcomes among minimally verbal 5- to 8-year-old children with autism. The goal of this sequentially randomized trial of 194 children was to compare starting intervention with either a highly structured intervention (discrete trial training [DTT], considered usual care) or a blended, naturalistic, developmental and behavioral intervention (Joint Attention, Symbolic Play, Engagement and Regulation [JASPER] and Enhanced Milieu Teaching [EMT], JASP-EMT) and then changing the intervention depending on how the child responded to the initial intervention. Results at 16 weeks found that there was no difference in improvement in spoken language outcomes for children who began with either intervention first. However, an adaptive intervention was modestly better for having the greatest spoken language at the end of the study: begin with DTT, then add parent training in the home for early responders, and combine DTT and JASP-EMT for slow responders. CLINICAL TRIAL REGISTRATION INFORMATION:Adaptive Interventions for Minimally Verbal Children With ASD in the Community (AIM-ASD); https://clinicaltrials.gov/study/NCT01751698.
BackgroundSchool transitions are accompanied by disruptions in routines and increased social and academic demands, creating challenges for autistic students, who often have difficulty coping with change. These transitions are also challenging for teachers, who often report feeling unprepared to guide their autistic students through the transition process.MethodsThis study examined teacher and student factors that contribute to teachers’ perceptions of transition planning for their autistic students. At four sites (Los Angeles, Philadelphia, Rochester, and Sacramento), 126 teachers responded to survey questions regarding their perception of transition planning for their autistic students, their students’ classroom behavior as they were preparing to transition, their own burnout, and a social network survey about the people they relied on to support their autistic students.ResultsTeachers reported being somewhat satisfied with their schools with the way that schools prepared their students for transition and that the transition planning was somewhat effective. Teachers also reported that they received little support from their schools during their students’ transition planning. Results of Generalized Linear Mixed Effects models indicated that teachers with positive perceptions of their students’ transition planning had larger support networks,ConclusionsThe findings of this study underscore that teachers’ support networks play an important role in helping teachers negotiate the transition process.
This 24-week single-blind trial tested a modular approach for young autistic children (MAYAC) that was delivered for fewer hours per week and modified based on child progress and parental input compared to comprehensive behavioral intervention treatment as usual (CBI, TAU). Participants were autistic children, ages 18-60 months of age. MAYAC was initially 5 h of intervention per week, one of which was parent training and the other four direct therapy focusing on social communication and engagement, but additional modules could be added for up to 10 h per week. Comprehensive behavior intervention was delivered for ≥15 h per week. Outcome measures included the Vineland Adaptive Behavior Scales; VABS, the Ohio Autism Clinical Improvement Scale - Autism Severity; OACIS - AS and the Pervasive Developmental Disorder Behavior Inventory - Parent; PDDBI-P. Implementation and parent satisfaction measures were also collected. Fifty-six children, mean age of 34 months, were randomized. Within-group analysis revealed significant improvements from baseline to week 24 for both MAYAC (p < 0.0001) and CBI, TAU (p < 0.0001) on the VABS. The noninferiority test was performed to test between group differences and MAYAC was not inferior to CBI, TAU on the VABS (p = 0.0144). On the OACIS - AS, 48.0% of MAYAC and 45.5% of CBI were treatment responders there were no significant changes on the PDDBI-P, for either group. Treatment fidelity was high for both groups (>95%) as was parent satisfaction. Findings from this small trial are promising and suggest MAYAC may be an alternative for some young autistic children and their families to CBI, TAU.
Heterogeneity among individuals on the autism spectrum is widely acknowledged as a barrier to develop effective interventions. Overcoming this challenge requires characterization of individual differences, especially for children that are minimally verbal and often excluded from research studies. Most studies that describe autistic subgroups identify a single minimally verbal verbal group based on a single identifying measure (e.g., ADOS module one or single item indicating absence of phrase speech). Determining personalized courses of intervention requires a more detailed understanding since a single intervention will not be effective for all who are minimally verbal. The present study identified comprehensive profiles of cognitive, language, and social communication skills within a large, diverse, group of minimally verbal children with autism. The analysis combined baseline data from two studies to yield a sample of 344 participants, who were 3 to 8 years old at the time of study onset, with 60% who identified as having a race/ethnicity other than White. Via latent profile analysis (LPA), a three-group model was identified as best fit to the data. Profile identification was dependent on a participant's combination of cognitive, expressive, and social communication characteristics, rather than a single domain. One group ( n = 206) had global delays, while the other two groups ( n = 95 and n = 43) had variable strengths in cognition and communication. Findings suggest that low-frequency/minimally verbal communicators with autism have heterogeneous characteristics that can be systematically organized.
New school transitions can be challenging for students on the autism spectrum. No published, evidence-based interventions exist to support families and teachers of students transitioning to elementary and secondary school during this critical period. Using Community Partnered Participatory Research, we developed Building Better Bridges (BBB), a caregiver coaching intervention that includes training on effective school communication, educational rights, advocacy, and child preparation strategies. We compared BBB (n = 83) to a module/resources-only comparison (n = 87) in a four-site randomized controlled trial in racially and ethnically diverse, under-resourced communities. In our intent-to-treat analysis, caregivers and teachers in BBB rated students’ transitions to the new classroom as more positive, relative to the comparison group. Results suggest this low-cost intervention can improve the transition process for families and students at high risk of poor transitions.
Preschool autistic children with significant global developmental delays and very limited language skills are at high risk for remaining minimally verbal at entry into primary school. This study compared two early intervention models for improving social communication and spoken language outcomes in 164 children who received intervention in their community preschool program for 6 months, with a six-month follow-up. The primary outcome measure was a standardized language assessment, and secondary measures focused on social communication. Results indicated children on average made 6 months gain in language development in the active 6 months of intervention with no difference between intervention models. Children who initiated joint attention more frequently, or who had higher receptive language at baseline made more progress if assigned to receive JASPER, a naturalistic developmental behavioral intervention. Children who received Discrete Trial Training made greater spoken language progress from exit to follow-up. These findings suggest that progress can be made in autistic children who have very little spoken language and who receive targeted early interventions. Individual trajectories vary and depend in part on initial abilities in social communication and receptive language. Future research might consider methods to systematically personalize approaches to fit child characteristics and family preference. LAY SUMMARY: This study compared two different early intervention approaches for teaching spoken language to minimally verbal, globally delayed autistic preschoolers. Children were given an hour of therapy daily for 6 months and then reassessed 6 months later. The majority of the 164 participants were from historically excluded populations (low income and minority), and therapy was delivered in school community settings by expert clinicians. Results indicated that the participants made significant progress regardless of intervention approach: 6 months gain in standardized language scores over 6 months, but slower progress during the period after therapy ended. Children who initiated joint attention more frequently, or who had higher language understanding at baseline made more progress if assigned to receive JASPER, a naturalistic developmental behavioral intervention. Children who received Discrete Trial Training made greater language progress during 6-month period after therapy ended. These findings suggest that progress can be made in children with ASD who have very little spoken language and who receive targeted early interventions.
As the prevalence of autistic children receiving special education continues to increase, educators are expected to identify and implement evidence-based interventions for autistic students. Unfortunately, there are numerous barriers to implementation of evidence-based interventions in schools and educators report a lack of adequate training regarding the needs of autistic students and appropriate intervention approaches. Modular approaches to intervention are a promising but untested strategy for helping educators receive training on evidence-based interventions and support with implementation. This study uses mixed methods to explore the initial feasibility of the Modular Approach to Autism Programs in Schools (MAAPS) in typical school settings. Key indicators of feasibility are presented using the RE-AIM framework (Glasgow et al. American journal of public health, 89(9), 1322-1327, Glasgow et al., 1999), with emphasis on intervention fidelity, social validity, and promise of efficacy. Additionally, directions for future research are discussed.
The estimated prevalence of autism spectrum disorder (ASD) is consistently higher in males than females. Gender differences in ASD have long been debated and are influenced by the historical period and source of the sample. The current study reports gender differences in core symptoms, associated features, and treatment response in 682 youth (585 males, 97 females) with ASD. The sample included participants (mean = 7.4 years; range 3–17 years) from six federally-funded, multisite, randomized clinical trials. These trials collected the same measures of social disability, repetitive behavior, adaptive skills, disruptive behavior, and anxiety pretreatment and used the Improvement scale of the Clinical Global Impression at study endpoint. Exploratory analyses yielded no differences between males and females across numerous pre-treatment measures. The rate of positive response was 49.7% for males and 53.6% for females (Chi square = 0.50; p = 0.48). In this sample of convenience, youth with ASD clinical characteristics and response to treatment showed no significant gender differences.
Background: Numerous studies have shown that racial/ethnic minority and under-resourced families face barriers that delay timely access to autism services. These barriers include lack of resources and information about autism, financial hardship, mistrust in the service system, cultural and language mismatch, and other factors that have yet to be identified. Method: The current study aimed to examine additional caregiver and system-level factors that could be associated with early service access using a diverse sample from four study sites (Los Angeles, CA; Philadelphia, PA; Sacramento, CA; and Rochester, NY). Partnering with community agencies that serve traditionally underrepresented groups, the research team recruited 118 caregivers of young children with autism who were low-income, English, Spanish or Korean speaking and had not accessed autism-specific services. Results: Regression analyses revealed that the total number of services accessed were associated with caregiver social network size (p = 0.011) but not by race, autism knowledge and caregiver agency. Among families receiving at least one non-autism specific service, a marginally significant interaction effect of site and primary language on total services received was observed (p = 0.06). Conclusion: Findings suggest that caregivers' social network connections are crucial in early service access, and future interventions could target increasing social networks to improve families' service engagement. More attention for non-English speaking families, especially those living in areas with few supports in their native languages, is needed.
This paper examines the reliability and validity of parent target problems (PTPs) in a multi-site randomized controlled trial of parent training (PT) versus psychoeducation (PEP) in children (150 boys, 19 girls; mean age 4.7 ± 1.2 years) with autism spectrum disorder (ASD) and disruptive behavior. At baseline, treatment blind, independent evaluators asked parents to nominate the child’s top two problems. Each problem was documented in a brief narrative. Narratives were reviewed and revised at follow-up visits during the six-month trial. When the trial was completed, five judges, blind to treatment condition, independently rated change from baseline on a 9-point scale (1 = normal; 2 = markedly improved; 3 = definitely improved; 4 = equivocally improved; 5 = no change; 6 = possibly worse; 7 = definitely worse; 8 = markedly worse; 9 = disastrously worse) at Weeks 8, 12, 16, and 24 (inter-rater intraclass correlation = 0.78). PTP scores for the two target problems were averaged across the five raters, yielding a mean score for each child at each time point. Mean PTP scores showed improvement in both treatment groups over the 24-week study. Compared to PEP, PTP ratings showed a steeper decline in PT based on significant interaction of group and time (t(df) = 2.14(155.9), p = 0.034; Week 24 effect size = 0.75). In categorical analysis, we compared cutoffs mean PTP scores of 3.0 (definitely improved), 3.25, and 3.5 with the positive response rate on the Clinical Global Impressions-Improvement scale from the original study. Sensitivities ranged from 52–78%. PTP narratives offer a systematic, reliable, and valid way to track child-specific outcomes in clinical trials and clinical practice.
To determine if cesarean delivery is adversely associated with child neurodevelopment as measured at 20 months and 7 years. In a prospective cohort study (n = 1328) in the Republic of Seychelles, we examined the association between mode of delivery and 22 measures of child neurodevelopment spanning multiple domains: cognition, executive and psychomotor function, language development, behavior, scholastic achievement, and social communication. Using multivariable linear regression, we evaluated the relationship between delivery mode (Cesarean/vaginal delivery) and each developmental outcome, while controlling for relevant covariates including child sex and age, maternal age, maternal IQ, whether both parents lived with the child, and Hollingshead socioeconomic status. At 20 months, children born via cesarean delivery had slightly higher scores (β = 0.11, 95% confidence interval: 0.00, 0.21) on the Infant Behavior Questionnaire–Revised Positive Affectivity/Surgency subtest, a measure of infant temperament, as compared to vaginal delivery. Delivery mode was not associated with any of the 7-year developmental outcomes. Our study does not support the notion that cesarean delivery is associated with child neurodevelopmental outcomes.
Few studies use a strengths-based perspective to identify strategies that support K-12 school transitions for historically minoritized families of children with autism spectrum disorder (ASD). In the present study, university researchers partnered with community stakeholders (e.g., disability advocates, community health organizations, etc.) in minoritized communities to examine the school transitions of children with ASD. We sought the experiential knowledge of racially, linguistically, economically, and geographically minoritized parents in the United States (n = 45) and the providers servicing these communities (n = 75) using dialogue groups and individual interviews about school transitions for children and adolescents with ASD. Applying a framework of community cultural wealth (Yosso, 2005), we identified the transition practices these families describe as supportive, and the types of community capital families engaged during the transition process. Supportive transition strategies included school tours and visits, meetings and workshops, transition tools, and skills development. Social and support networks in school and community also bolstered transition success. Implications for school practice include developing formal structures for information sharing across the transition and developing partnerships with community-based organizations that already serve these communities.
Children with autism situated in lower income families often receive intensive educational interventions as their primary form of treatment, due to financial barriers for community interventions. However, the continuity of care can be disrupted by school transitions. The quality of social relationships during the transition to a new school among parents, school staff and community providers, called the team-around-the-child (TAC), can potentially buffer a child with autism from the adverse effects caused by care disruptions. Qualities of social relationships, including trust and collaborative problem solving, can be measured using social network analysis. This study investigates if two different types of TAC relationships, defined as (1) the level of trust among team members and (2) the degree of collaborative problem solving among team members, are associated with perceived successful transitions for children with autism from lower income families. Findings suggested that TAC trust is significantly associated with the outcome of transition success for children with autism immediately post-transition.
Parents of children with autism spectrum disorder (ASD) face higher levels of caregiver strain compared to parents of children with other disabilities. This study examined child clinical features that predict high levels of caregiver strain for 374 parents of children with ASD. Caregiver strain was measured using the Caregiver Strain Questionnaire (CGSQ) objective, subjective internalized, and subjective externalized subscales. Confirmatory factor analysis indicated an acceptable fit for the original CGSQ three-factor solution. The strongest child predictors across CGSQ subscales were: disruptive behavior for objective strain, autism severity and disruptive behavior for subjective internalized strain, and oppositional behavior and hyperactivity for subjective externalized strain. Individualized interventions that attend to specific elements of parental strain may reduce strain and improve family wellbeing.
Anxiety is a common and impairing problem in children with autism spectrum disorder, but little is known about it in preschool children with autism spectrum disorder. This article reports on the characteristics of anxiety symptoms in young children with autism spectrum disorder using a parent-completed rating scale. One hundred and eighty children (age 3–7 years) participated in a clinical trial of parent training for disruptive behaviors. Anxiety was measured as part of pre-treatment subject characterization with 16 items from the Early Childhood Inventory, a parent-completed scale on child psychiatric symptoms. Parents also completed other measures of behavioral problems. Sixty-seven percent of children were rated by their parents as having two or more clinically significant symptoms of anxiety. There were no differences in the Early Childhood Inventory anxiety severity scores of children with IQ < 70 and those with ⩾70. Higher levels of anxiety were associated with severity of oppositional defiant behavior and social disability. Anxiety symptoms are common in preschoolers with autism spectrum disorder. These findings are consistent with earlier work in school-age children with autism spectrum disorder. There were no differences in anxiety between children with IQ below 70 and those with IQ of 70 and above. Social withdrawal and oppositional behavior were associated with anxiety in young children with autism spectrum disorder.
Introduction Children with autism spectrum disorder (ASD) benefit when their caregivers can effectively advocate for appropriate services. Barriers to caregiver engagement such as provider mistrust, cultural differences, stigma, and lack of knowledge can interfere with timely service access. We describe Mind the Gap (MTG), an intervention that provides education about ASD, service navigation, and other topics relevant to families whose children have a new ASD diagnosis. MTG was developed via community partnerships and is explicitly structured to reduce engagement barriers (e.g., through peer matching, meeting flexibility, culturally-informed practices). We also present on the results of a pilot of MTG, conducted in preparation for a randomized controlled trial. Methods MTG was evaluated using mixed methods that included qualitative analysis and pre/post-test without concurrent comparison group. Participants (n=9) were primary caregivers of children (ages 2-7 years) with a recent ASD diagnosis and whose annual income was at or below 185% of the federal poverty level. In order to facilitate trust and relationship building, peer coaches delivered MTG. The coaches were parents of children with ASD who we trained to deliver the intervention. MTG consisted of up to 12 meetings between coaches and caregivers over the course of 18 weeks. Coaches delivered the intervention in homes and other community locations. Coaches shared information about various “modules,” which were topics identified as important for families with a new ASD diagnosis. Coaches worked with families to answer questions, set weekly goals, assess progress, and offer guidance. For the pilot, we focused on three primary outcomes: feasibility, engagement, and satisfaction. Feasibility was measured via enrollment and retention data, as well as coach fidelity (i.e., implementation of MTG procedures). Engagement was measured via number of sessions attended and percentage completion of the selected outcome measures. For completers (n=7), satisfaction was measured via a questionnaire (completed by caregivers) and open-ended interviews (completed by caregivers and coaches). Results We enrolled 56% of referred caregivers and 100% of eligible families. Retention was high (78%). Coaches could deliver the intervention with fidelity, completing, on average, 83% of program components. Engagement also was high; caregivers attended an average of 85% of total possible sessions and completed 100% of their measures. Caregivers indicated moderately high satisfaction with MTG. Qualitative data indicated that caregivers and coaches were positive about intervention content, and the coach-caregiver relationship was important. They also had suggestions for changes. Conclusion Mind the Gap demonstrates evidence of feasibility, and data from the pilot suggest that it addresses intervention engagement barriers for a population that is under-represented in research. The results and suggestions from participants were used to inform a large-scale RCT, which is currently underway. Overall, MTG shows promise as an intervention that can be feasibly implemented with under-resourced and ethnic minority families of children with ASD Trial registration This study is registered with ClinicalTrials.gov: NCT03711799 .
To date there are no evidence-based comprehensive interventions for use in school settings. There are numerous barriers to delivery of high-quality interventions in schools that have limited the transfer of research-based interventions to school settings. Modular Approach to Autism Programing for Schools (MAAPS) is a framework for implementation of evidence-based interventions in school settings that is designed to address these barriers. The development and initial evaluation of MAAPS was conducted using an implementation-science framework and results indicate that MAAPS is aligned with needs and resources available in schools, that it had excellent social validity, and that there is good evidence that MAAPS is effective for addressing core and associated features of autism in educational settings.
This study examined whether outcomes in early intensive behavioral intervention (EIBI) during a university-led multisite project could be replicated by the same community agency independently of the project. Participants, age 18 to 75 months at onset of intervention, were 48 children with autism spectrum disorder (ASD) enrolled in 35 hr per week of publicly funded, community-based EIBI for 3 years and 46 children who were matched on baseline characteristics and received early childhood services as usual (SAU) through local early childhood special education providers. Linear mixed models indicated that EIBI participants improved significantly more than SAU participants on standardized tests of IQ, nonverbal IQ, adaptive behavior, and academic achievement, administered by independent evaluators. Although limited by the use of a matched comparison group rather than random assignment, the study provides evidence for the sustainability of effective EIBI in community settings for children with ASD who start intervention at varying ages throughout early childhood.