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.

Transitioning to a new school is often challenging for students with autism spectrum disorder. Few studies have examined the transition needs of students with autism spectrum disorder or the benefits of specific supports. This review synthesizes research findings on the difficulties that school transitions pose for students with autism spectrum disorder and their parents and teachers, and the strategies used to support students and parents during school transition. The review included 27 studies (10 examining the transition to primary school, 17 the transition to secondary school), with data from 443 students with autism spectrum disorder, 453 parents, and 546 teachers, across four continents (North America, Europe, Africa, and Australia). Studies reported that children with autism spectrum disorder struggled with anxiety and increased social pressure, their parents felt overwhelmed with complex placement decisions and worried about the well-being of their children, and teachers strove to provide appropriate supports to their students with autism spectrum disorder, often with inadequate resources. Findings indicated that the most useful strategies involved helping the student adjust to the new school setting, individualizing transition supports, clarifying the transition process for parents, and fostering communication both between the sending and receiving schools, and school and home.

The purpose of this review was to estimate the impact of parent engagement strategies tested with underrepresented families of young children with social, emotional, or behavioral disorders, and describe the combinations in which these strategies are commonly used together. We conducted a systematic review using the PracticeWise Engagement Coding System to identify which strategies had the strongest empirical support for engaging underrepresented (i.e., minority race or ethnicity, or low income) families receiving psychosocial services for their children. Social network analyses were used to identify the frequency of strategy use and how strategies were combined to engage underrepresented families. Linear regression was used to estimate the impact of each strategy on parent engagement, using attrition as a proxy for non-engagement. Thirty-five studies met inclusion criteria. Parent attrition was predicted by larger sample sizes, lower maternal education, interventions that were more community or home-based, less therapist monitoring, positive reinforcement from therapists, and more pairing families with peers. Social network analyses suggested that more effective strategies were more frequently implemented alone and less effective strategies were commonly combined with each other. Our findings suggest that researchers and practitioners require guidance in selecting engagement strategies to reduce attrition of underrepresented families in treatment. Although we identified promising strategies for improving parent engagement in treatment for underrepresented children with social, emotional, or behavioral disorders, the frequent combining of engagement strategies in research means that there is little data on the independent effects of interventions to increase parent engagement for this population.

Decades of research have established that racial ethnic minority, low-income, and/or non-English speaking children with autism spectrum disorder (ASD) are diagnosed later than white children, and their families experience greater difficulty accessing services in the USA. Delayed access to timely diagnosis and early intervention may impact child outcomes and family quality of life. Despite their cognition of these disparities and their significant impact on the lives of those affected, explanations for the barriers experienced by underserved families are elusive, likely due to the complex interaction between structural and family factors. This study used qualitative methods to gather family and provider perspectives of perceived barriers and facilitators to obtaining an ASD diagnosis and accessing ASD-related services for underserved families. Themes from focus groups and interviews with families from three cultural groups (black, Hispanic/Latino, and Korean) and three primary languages (English, Korean, and Spanish) highlight specific barriers related to family, community, and systemic challenges as well as facilitators to accessing care for these populations. Family experiences are expanded upon with viewpoints from the providers who work with them. Recommendations are made for reducing disparities in the existing ASD service system including increasing professional, family, and community education; increasing culturally responsive care; improving provider-family partnerships; and addressing practical challenges to service access.

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.

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.

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.

Objective

We explored patterns of concomitant psychiatric disorders in a large sample of treatment-seeking children and adolescents with autism spectrum disorder (ASD).

Methods

Participants were 658 children with ASD (age 3-17 years; mean = 7.2 years) in one of six federally-funded multisite randomized clinical trials (RCT) between 1999 and 2014. All children were referred for hyperactivity or irritability. Study designs varied, but all used the Child and Adolescent Symptom Inventory or Early Childhood Inventory to assess Attention Deficit Hyperactivity Disorder (ADHD), Oppositional-Defiant Disorder (ODD), Conduct Disorder (CD), Anxiety Disorders, and Mood Disorders. In addition, several measures in common were used to assess demographic and clinical characteristics.

Results

Of the 658 children, 73% were Caucasian and 59% had an IQ >70. The rates of concomitant disorders across studies were: ADHD 81%, ODD 46%, CD 12%, any anxiety disorder 42%, and any mood disorder 8%. Two or more psychiatric disorders were identified in 66% of the sample. Of those who met criteria for ADHD, 50% also met criteria for ODD and 46% for any anxiety disorder. Associations between types of concomitant disorders and a number of demographic and clinical characteristics are presented.

Conclusion

In this well-characterized sample of treatment-seeking children with ASD, rates of concomitant psychiatric disorders were high and the presence of two or more co-occurring disorders was common. Findings highlight the importance of improving diagnostic practice in ASD and understanding possible mechanisms of comorbidity.

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.

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.