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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.

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.

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.

Background: Although many interventions have empirical support in improving the outcomes of students with autism spectrum disorders (ASD), schools struggle with implementation of these interventions. Method and materials: We conducted 13 focus groups with 69 participants who included parents, educators, and administrators across three states to examine the challenges schools face in implementing evidence-based interventions (EBIs) and to evaluate the acceptability and contextual fit of the Modular Approach to Autism Programs for Schools (MAAPS). MAAPS is a comprehensive modular intervention that uses an active coaching process to guide school-based teams in selecting, planning, and implementing EBIs that are customised to meet individual student needs. Results: Results suggest that when implementing EBIs, schools face considerable challenges including limited resources (eg funding, personnel, materials, time) and personnel training. MAAPS was considered highly acceptable primarily due to the involvement of a coach who would support the teacher. Specifically, participants indicated that the physical presence of the coach actively providing support could help relieve the stressors and burdens of the teacher. Conclusions: Interpretations of these findings are discussed in terms of their implications on understanding the challenges schools face when adopting and implementing EBIs.

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.

There is a large gap between research-based interventions for supporting children with autism spectrum disorder (ASD) and current practices implemented by educators to meet the needs of these children in typical school settings. Myriad reasons for this gap exist including the external validity of existing research, the complexity of ASD, and constraints on service delivery systems. Thus, a systematic approach is needed to adapt research-based interventions for use in typical school settings. One way to address these challenges is a modular intervention framework. In this article, we describe how a modular intervention framework could be implemented in schools. A case study is used to illustrate implementation of the framework.

There is a large gap between research-based interventions for supporting children with autism spectrum disorder (ASD) and current practices implemented by educators to meet the needs of these children in typical school settings. Myriad reasons for this gap exist including the external validity of existing research, the complexity of ASD, and constraints on service delivery systems. Thus, a systematic approach is needed to adapt research-based interventions for use in typical school settings. One way to address these challenges is a modular intervention framework. In this article, we describe how a modular intervention framework could be implemented in schools. A case study is used to illustrate implementation of the framework. [This article was published in "Education and Treatment of Children" (EJ1172821).]

IntroductionChildren 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.MethodsMTG 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).ResultsWe 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.ConclusionMind 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 registrationThis study is registered with ClinicalTrials.gov: NCT03711799.

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.

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.

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.

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

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.

Objectives: Parents of children with autism spectrum disorder (ASD) report high levels of stress that can interfere with important child and family treatments. Limited past research considers how the caregiving experience and social determinants of health may contribute to treatment engagement and outcomes, particularly in underrepresented families, who already experience service and health disparities. We aimed to assess the experiences of caring for an individual with ASD, with specific emphasis on perceptions of stress. Methods: Three key informant interviews were conducted with parents (n = 1) and providers (n = 2) of children with ASD to refine interview guide questions. Once questions were refined, four focus groups (n = 17) and one key informant interview were conducted with parents of children with ASD who were (a) non-white, (b) Spanish speakers, (c) of limited financial resources, and/or (d) living in rural counties. All participants lived in Western New York, with the majority residing in Rochester. Content analysis by two independent coders was used to identify and refine themes. Results: Themes included--(a) caregiving for an individual with ASD can cause interference with family functioning, (b) misperceptions of ASD contribute to caregiver stress, (c) culture contributes to stressors for parents, and (d) service navigation difficulties are a significant source of stress. Suggestions for interventions to address parents stress included: modular and integrative treatments for multiple content areas, addressing cultural barriers to treatment engagement, and education on ASD to the community. Conclusions: Parent-focused interventions for caregivers of children with ASD should specifically explore and address service and health disparities for parents, especially those predicated on race, ethnicity, rurality, and language of origin. Interventions should also be individualized to parent characteristics and experiences. In future research on parent training, the unique contributions of caregiver stress and other characteristics (e.g. race-related stress, geographic location) should be included as potential modifiers of treatment.

Repetitive and invariant behavior is a diagnostic feature of autism. We implemented a lag reinforcement schedule to increase response diversity for 6 participants with autism aged 6 to 10 years, 4 of whom also received prompting plus additional training. These procedures appeared to increase the variety of building-block structures, demonstrating that an intervention that includes differential reinforcement can increase response diversity for children with an autism spectrum disorder. (Contains 2 figures.)

We evaluated a staff training and management package for increasing accuracy of recording frequency of problem behavior in a residential care facility. A multiple baseline design across the first and second work shifts showed that 2 of 8 participants increased their accuracy following in-service training, and all 8 improved during a condition with supervisor presence and feedback. Improvements were maintained when feedback was removed and generalized to activity periods when neither supervisor presence nor feedback was provided. Other staff behavior was not adversely affected by the intervention package. (Contains 1 figure.)

Discrete trial training (DTT) is a well-established intervention for teaching skills to children with autism; however, few published guidelines are available for determining whether a child's rate of learning a particular skill is satisfactory and, if not, what to do. We assert that progress within 8-10 teaching sessions usually is evidence of satisfactory skill acquisition, whereas absence of progress within this time frame indicates a need to consider modifying or stopping instruction of that skill. Absence of progress may involve (a) consistently low rates of correct responding, (b) variable performance across sessions, (c) increases in problem behavior (often in conjunction with low or variable rates of correct responding), or (d) limited generalization of the skill outside intervention. Likely reasons for each of these patterns are described, and decision flowcharts for identifying possible solutions are outlined. When implemented with supervision from a qualified professional, these flowcharts may facilitate systematic problem solving. (Contains 2 tables and 6 figures.)

The extraordinary success of behavior-analytic interventions for individuals with autism spectrum disorder (ASD) has fueled the rapid growth of behavior analysis as a profession. One reason for this success is that for many years behavior analysts were virtually alone in conducting programmatic ASD intervention research. However, that era has ended. Many investigators from other disciplines are now carrying out large-scale intervention studies and beginning to report successes of their own. The increasing number and range of studies has the potential to improve services for individuals with ASD, and it challenges behavior analysts to intensify their research efforts.

Repetitive and invariant behavior is a diagnostic feature of autism. We implemented a lag reinforcement schedule to increase response diversity for 6 participants with autism aged 6 to 10 years, 4 of whom also received prompting plus additional training. These procedures appeared to increase the variety of building-block structures, demonstrating that an intervention that includes differential reinforcement can increase response diversity for children with an autism spectrum disorder. Key words: autism, behavioral variability, lag reinforcement, stereotypy, response variability, stimulus variability doi: 10.1901/jaba.2010.43-265

We evaluated a staff training and management package for increasing accuracy of recording frequency of problem behavior in a residential care facility. A multiple baseline design across the first and second work shifts showed that 2 of 8 participants increased their accuracy following inservice training, and all 8 improved during a condition with supervisor presence and feedback. Improvements were maintained when feedback was removed and generalized to activity periods when neither supervisor presence nor feedback was provided. Other staff behavior was not adversely affected by the intervention package. DESCRIPTORS: staff management, frequency recording, feedback, data collection, developmental disabilities

Objective: Many children with autism spectrum disorder (ASD) have feeding and mealtime problems. To address these, we conducted a pilot randomized trial of a new 11-session, individually delivered parent training program that integrated behavioral strategies and nutritional guidance (PT-F).Methods: Forty-two young children (age: 2 to 7-11 years) with ASD and feeding problems were assigned to 11 sessions of PT-F intervention over 20 weeks or a waitlist control. Outcomes included attendance, parent satisfaction, therapist fidelity, and preliminary assessments of child and parent outcomes.Results: Of the 21 PT-F families, attendance was high (85%) as was parent satisfaction (94% would recommend to others). Treatment fidelity was also high (97%-therapist integrity; 94%-parent adherence). Compared with waitlist, children whose parents participated in PT-F showed significantly greater reductions on the two parent-completed primary outcomes (Brief Autism Mealtime Behavior Inventory-Revised; Twald = -2.79; p = .003; About Your Child's Eating; Twald = -3.58; p = .001). On the independent evaluator-completed secondary eating outcome, the Clinical Global Impression-Improvement, 48.8% of the participants in PT-F were rated as "responders" compared with 0% in waitlist (p = .006). General child disruptive behavior outcomes decreased more in PT-F but not significantly. Parent outcomes of caregiver stress showed nonsignificant trends favoring PT-F with moderate to small effect sizes.Conclusions: This trial provides evidence for feasibility, satisfaction, and fidelity of implementation of PT-F for feeding problems in young children with ASD. Feeding outcomes also appeared favorable and lends support for conducting a larger efficacy trial. [ABSTRACT FROM AUTHOR]

Objectives: Parents of children with autism spectrum disorder (ASD) report high levels of stress that can interfere with important child and family treatments. Limited past research considers how the caregiving experience and social determinants of health may contribute to treatment engagement and outcomes, particularly in underrepresented families, who already experience service and health disparities. We aimed to assess the experiences of caring for an individual with ASD, with specific emphasis on perceptions of stress. Methods: Three key informant interviews were conducted with parents (n = 1) and providers (n = 2) of children with ASD to refine interview guide questions. Once questions were refined, four focus groups (n = 17) and one key informant interview were conducted with parents of children with ASD who were (a) non-white, (b) Spanish speakers, (c) of limited financial resources, and/or (d) living in rural counties. All participants lived in Western New York, with the majority residing in Rochester. Content analysis by two independent coders was used to identify and refine themes. Results: Themes included: (a) caregiving for an individual with ASD can cause interference with family functioning, (b) misperceptions of ASD contribute to caregiver stress, (c) culture contributes to stressors for parents, and (d) service navigation difficulties are a significant source of stress. Suggestions for interventions to address parents stress included: modular and integrative treatments for multiple content areas, addressing cultural barriers to treatment engagement, and education on ASD to the community. Conclusions: Parent-focused interventions for caregivers of children with ASD should specifically explore and address service and health disparities for parents, especially those predicated on race, ethnicity, rurality, and language of origin. Interventions should also be individualized to parent characteristics and experiences. In future research on parent training, the unique contributions of caregiver stress and other characteristics (e.g. race-related stress, geographic location) should be included as potential modifiers of treatment. [ABSTRACT FROM AUTHOR]

Autism spectrum disorder (ASD) is a developmental disorder that significantly impairs patients' ability to perform normal social interaction and communication. Moreover, the diagnosis procedure of ASD is highly time-consuming, labor-intensive, and requires extensive expertise. Although there exists no known cure for ASD, there is consensus among clinicians regarding the importance of early intervention for the recovery of ASD patients. Therefore, to benefit autism patients by enhancing their access to treatments such as early intervention, we aim to develop a robust machine learning-based system for autism detection by using Natural Language Processing techniques based on information extracted from medical forms of potential ASD patients. Our detecting framework involves converting semi-structured and unstructured medical forms into digital format, preprocessing, learning document representation, and finally, classification. Testing results are evaluated against the ground truth set by expert clinicians and the proposed system achieve a 83.4% accuracy and 91.1% recall, which is very promising. The proposed ASD detection framework could significantly simplify and shorten the procedure of ASD diagnosis. [ABSTRACT FROM AUTHOR]