Integration of Family Navigation into ECHO Autism for Pediatric Primary Care in Underserved Communities.

Children with autism from underserved communities face complex system-, provider-, and family-level barriers to accessing timely diagnosis and early intervention. The current study evaluated the preliminary effects and feasibility of a new program (ECHO Autism LINKS) that integrated pediatric primary care provider (PCP) training with family navigation (FN) to bridge the gaps between screening, referral, and service access. Three cohorts of PCPs (n = 42) participated in the program, which consisted of 60-minute sessions delivered by Zoom twice per month for 12 months. Each session included didactics, case-based learning, and collaborative discussion with participants and an interdisciplinary team of experts. Family navigators were members of the expert team and provided FN services to families referred by PCP participants. Program attendance and engagement were strong, with 40 cases presented and 258 families referred for FN services, most of whom (83%) needed help accessing and connecting with services, and 13% required ongoing support due to complex needs. PCPs demonstrated significant improvements in self-efficacy in providing best-practice care for children with autism, reported high satisfaction, and observed improved knowledge and practice as a result of the program. The results of this initial pilot provide support for the feasibility, acceptability, and preliminary efficacy of the ECHO Autism LINKS program. The model holds promise in addressing complex barriers to healthcare access by providing both PCPs and families with the knowledge and support they need. Future research is needed to evaluate the efficacy and effectiveness of the program in improving child and family outcomes.

The Association Between Adverse Childhood Experiences and Sleep in Children with Autism Spectrum Disorder.

Children with autism spectrum disorder are at higher risk for adverse childhood experiences (ACEs). They are also more vulnerable to sleep problems and are less likely to obtain the recommended number of hours of sleep than neurotypical children. In the general population, ACEs have been linked to future sleep difficulties. Despite increased vulnerabilities to both ACEs and sleep problems, no study has examined this association in ASD. Using the National Survey of Children's Health across four cohorts, we examined whether ACEs were a risk factor to obtaining the recommended number of hours of sleep, while accounting for demographic and health factors typically associated with sleep duration. Findings indicate that children with ASD with more ACEs were less likely to get the recommended number of hours of sleep than children with fewer ACEs. Other factors associated with sleep included race, anxiety, autism severity, and overall health. These findings indicate that sleep problems in children with ASD are complex and multifaceted. Among other considerations, it is important for clinicians to screen children with ASD for ACEs and consider the possible impact of ACEs on sleep.

Feasibility and preliminary efficacy of behavioral activation for treatment of depression in autistic adolescents.

LAY ABSTRACT: Depression is common among autistic youth and has a significant negative impact on quality of life and day-to-day functioning. Despite great need for efficacious treatments, there are currently limited research-supported interventions for depression symptoms in autistic young people. This study tested a novel, behavior-based approach or psychotherapy for treatment of depression symptoms in autistic adolescents without intellectual disability (i.e. Behavioral Activation for Autistic Adolescents, BA-A) with 15 youth (11-16 years old). BA-A is an individually delivered 12-session therapy that was developed for and to meet the needs of autistic youth with depression. Results found that autistic youth and their caregivers were able to participate in BA-A therapy sessions, and clinicians were able to deliver BA-A in accordance with the treatment manual. Notably, results demonstrated that autistic youth depression symptoms significantly improved after participating in BA-A. Furthermore, anxiety symptoms and social skills significantly improved following BA-A.

Associations Among Autism Symptom Domains and Facets of Caregiver Strain.

Parents of children with autism spectrum disorder (ASD) often experience elevated levels of caregiver strain (CGS). Few studies have examined the relationship between core ASD symptoms and each facet of CGS: objective, subjective internalized, and subjective externalized strain. The predictive effect of core and associated features of ASD on CGS facets were investigated, while also exploring the moderating effect of age. Atypical behaviors and behavior problems were the strongest predictors of all types of caregiver strain. For younger children, more repetitive behaviors predicted higher externalized strain, yet the opposite was true for parents of adolescents. Given that caregiver strain impacts parents' service utilization patterns, future research should focus on strategies to support parents in reducing caregiver strain.

The impact of COVID-19 on receipt of health services among children with and without autism.

ABSTRACT: TThe COVID-19 pandemic disrupted a range of health services for children across the United States. Autistic children have well-documented deficits in health-related services compared to nonautistic children. Parents of autistic children reported an increase in mental health and behavior problems with the onset of the pandemic, increasing the need for supportive services. The current study used data from the National Survey of Children's Health from 2019 and 2020 to conduct logistic regressions predicting the likelihood of having unmet service needs before and after the onset of the pandemic. Results suggested that autistic children were more likely to have unmet medical, dental, and mental health service needs across years compared to nonautistic children, but there were no interactions by year. All children experienced an increased likelihood of having unmet needs from pre- to post-pandemic. Results suggest that although the pandemic disrupted services across the board, autistic children lacked health services regardless of the pandemic, pointing to persisting disparities in service receipt. A discussion of ongoing barriers to services and issues related to virtual services is included. Future research should further investigate the feasibility of virtual services as well as ways of reducing barriers to all services for autistic children.

Extracurricular Activity Participation Among Autistic Children and Adolescents: Buffer for Internalizing Conditions and Foundation for Friendship?

PURPOSE: Internalizing conditions, such as anxiety and depression, and difficulties with developing and maintaining friendships are common among autistic children and adolescents. Participation in extracurricular activities may buffer against these challenges as they provide naturalistic opportunities to bring peers with shared interests and skills together. As such, the purpose of the current study was to examine associations between sport and club participation and (1) friendship success and (2) co-occurring anxiety and depression in a large sample of autistic youth. METHODS: Secondary analysis was performed using data from the 2018-2019 National Survey of Children's Health. Participants were 562 autistic children (ages 6-11 years) and 818 autistic adolescents (ages 12-17 years). Within each age group, a series of binary logistic regression analyses were conducted. RESULTS: Club participation was not associated with friendship or internalizing conditions. However, participation in sports was positively associated with friendship success among both children (OR = 2.07, p = .006) and adolescents (OR = 2.35, p = .001). Results also found that adolescents who participated in sports were 34% less likely to have diagnosis of depression (p = .048). CONCLUSION: Findings suggest that participation in sports may play a meaningful role in protecting against depression during adolescence and serve as a context for friendship development across childhood and adolescence. Future research should address barriers to extracurricular activity participation and identify the specific components of sports that are most beneficial to autistic youth to inform activity offerings and the development of interventions targeting friendship formation and mental health outcomes.

Caregiver Perspectives Regarding Special Education Service Changes Amid COVID-19.

School instruction and service delivery changed dramatically amid disruptions caused by the COVID-19 pandemic. Children receiving special education services were especially vulnerable to the impact of reduced or eliminated school services as part of their Individualized Education Programs. Caregiver perspectives regarding the changes in school service delivery amid the pandemic were evaluated using qualitative methods. Caregivers reported reduced or eliminated services, inconsistencies in service delivery, challenges with distance learning, increased stress and advocacy efforts, and varying perceptions of student engagement and teacher efforts. The implications of school services changes are discussed.

The Impact of Co-occurring ADHD on Social Competence Intervention Outcomes in Youth with Autism Spectrum Disorder.

PURPOSE: The co-occurrence of autism spectrum disorder (ASD) and attention- deficit/hyperactivity disorder (ADHD) is significant and associated with a host of negative outcomes. Studies investigating social functioning in the presence of the ASD/ADHD co-occurrence have produced mixed findings. The present study further evaluated the impact of co-occurring ADHD on social functioning among youth with ASD and compared treatment response to a social competence intervention between youth with ASD and ASD + ADHD. METHODS: Two-way repeated measures analyses of variance (ANOVAs) were computed with diagnostic group and time as the independent variables and measures of social functioning as dependent variables. Group and Time effects and Group by Time interactions were examined. RESULTS: Youth with co-occurring ADHD displayed more impairments related to social awareness, but not in other social areas. Participants in both the ASD and ASD + ADHD groups demonstrated significant improvement following a social competence intervention. CONCLUSION: Co-occurring ADHD did not negatively affect treatment response. Youth with ASD + ADHD may benefit highly structured interventions with a scaffolded teaching design.

Association Between Neighborhood Support and Family Resilience in Households with Autistic Children.

The capacity of families with autistic children to demonstrate resilience is a notable strength that has received little attention in the literature. A potential predictor of family resilience in households with autistic youth is neighborhood support. This study examined the relationship between neighborhood support and family resilience in households with autistic youth utilizing data from the National Survey of Children's Health. A structural equation model was constructed as neighborhood support and family resilience were latent variables. Findings demonstrated that neighborhood support significantly predicts family resilience. This study contributes to the literature as the first quantitative investigation of predictors of family resilience with this group. Strengths of autistic youth, their families, and their communities can be and should be leveraged to address challenges.

ECHO (Extension for Community Healthcare Outcomes) Autism STAT: A Diagnostic Accuracy Study of Community-Based Primary Care Diagnosis of Autism Spectrum Disorder.

OBJECTIVE: Children can be reliably diagnosed with autism spectrum disorder (ASD) by a highly trained clinician as early as 12 to 24 months of age, but recent estimates indicate that the average age of diagnosis is 4.4 years. We hypothesized that trained primary care physicians and practitioners can reliably and accurately diagnose children 14 to 48 months with unambiguous symptoms of ASD. METHODS: Through this diagnostic accuracy study, 20 patients diagnosed with ASD by clinicians trained through the ECHO (Extension for Community Healthcare Outcomes) Autism STAT program participated in an independent gold-standard evaluation at a regional autism center. Caregiver perceptions of the diagnostic process were also assessed. RESULTS: Of the 20 patients who received a diagnosis of ASD by a trained clinician and completed the study, 19 diagnoses were confirmed by a gold-standard evaluation. Caregivers indicated that undergoing diagnosis in their local community rather than an autism specialty center was helpful (4.8/5 on a 5-point Likert scale, n = 19). Results of this study demonstrate that primary care clinicians can be trained to reliably diagnose ASD in children 14 to 48 months with unambiguous symptoms. CONCLUSION: Diagnosis in the primary care setting may lead to earlier diagnosis and quicker connection to evidence-based therapies and interventions. Given the potential impact of increasing access to high-quality diagnostic services, the role of primary care clinicians in the diagnosis of ASD should be further evaluated.

Health Care Needs, Experiences, and Perspectives of Autistic Adults.

Background: Autistic adults have high rates of co-occurring health conditions, suicide, and premature mortality, yet often experience health care barriers and poor health outcomes. A better understanding of the health care needs and experiences of autistic adults is essential for improving the health care system and patient experience. Methods: This study examined the perspectives of autistic adults regarding their health care experiences in primary care and other settings and their suggestions for improvement using both qualitative and quantitative methods. Twenty autistic adults (aged 18-35 years, 65% male) completed surveys and individual semi-structured interviews. Results: Qualitative data analysis results revealed 10 subthemes across 3 overarching themes: (1) system- and clinic-level factors affect access to care, (2) aspects of the clinic environment affect health care experiences, and (3) provider knowledge and practices affect health care experiences. Within the first theme, participants described barriers to obtaining services, including scheduling logistics, costs and inadequate insurance coverage, and transportation barriers. The second theme focused on aspects of the clinic environment that participants found especially relevant to their health care experiences and that required specific accommodations. This included sensory input, anxiety-provoking situations and procedures, and wait time. Within the third theme, participants emphasized aspects of providers' care that affected their health care experiences. Key factors included provider knowledge about autism, communication, rapport, and individualized care and patient-provider partnerships. Conclusion: Overall, the findings point to a need for provider training and improvements to the health care delivery system to better meet the unique needs of autistic adults.

Why is this an important issue?: Receiving good health care is important for health and well-being. Understanding autistic adults' perspectives on their health care experiences will help identify ways that health care services can be improved to better meet their needs and preferences in the future. What was the purpose of this study?: The purpose of this study was to learn from autistic adults about their health care needs, experiences, and suggestions for improvement. What did the researchers do?: The researchers asked autistic adults in the United States to complete a survey and participate in an interview over Zoom. The survey and interview questions asked about their experiences receiving health care services and suggestions for how to improve health care services for autistic adults. What were the results of the study?: Twenty autistic adults between the ages of 18 and 35 years participated in this study. Most participants were men (65%) and most were White (75%). The participants shared many important insights about their primary health care experiences and experiences in other health care settings. The results fell into main "themes" or ideas that people had in common. These themes are not listed in any particular order. Autistic adults described many factors that make it hard to access to care, such as getting an appointment, finding transportation, or paying for health care. They explained that the clinic environment needs to be better suited to their needs, such as having a quiet place to wait or sensory accommodations. Participants wanted their doctors to know more about autism and to be able to connect and communicate with them. They also wanted their doctors to partner with them to make sure their health care treatment plan is acceptable and understandable. What do these findings add to what was already known?: These findings show that autistic adults in the United States face many barriers in receiving health care. Some recommendations for improvement may be helpful for all patients, such as being able to book appointments online or having a doctor who does not rush you. Other improvements need to be tailored to the unique needs of autistic patients, such sensory accommodations or autism training for doctors and clinic staff. What are potential weaknesses in the study?: Because the study was small and only included adults who were able to share about their experiences during an interview, these results may not apply to all autistic adults. Another limitation is that the study was designed and carried out by non-autistic (allistic) researchers, who have different perspectives from autistic people. We asked participants to help us interpret our findings to help address this limitation. How will these findings help autistic adults in the future?: The insights from this study provide a lot of recommendations about how health care services can be improved to better meet the needs and preferences of autistic adults in the future.

A mixed methods study of autistic adults' mental health therapy experiences.

Autistic adults are at high risk for co-occurring mental health problems and need access to effective and appropriate mental health treatment. However, the relative effectiveness or acceptability of specific mental health strategies among autistic adults has not been previously examined. The current study sought to gain a deeper understanding of autistic adults' experiences and preferences regarding mental health strategies using a mixed methods approach. Autistic adults (n = 303, ages 21-77) completed online surveys and open-ended questions about their mental health and therapy experiences. Most (88.8%) had participated in therapy, with cognitive approaches being the most common. Regarding overall therapy experiences, qualitative analyses revealed four primary themes and nine subthemes. Therapist acceptance and understanding were seen as critical for therapy success, and many participants felt that therapy was helpful for personal growth. However, many participants found that talking in session was challenging and noted that aspects of the session format affected their ability to engage in therapy. Regarding specific strategies, four cross-cutting themes and eight strategy-specific subthemes were identified. A variety of strategies were seen as helpful for reducing anxiety and improving mood. However, autistic adults reported trouble generalizing strategies to daily life and found some techniques to be difficult to implement due, in part, to their unique autism-related needs. As the first study of its kind, the results underscore the importance of establishing a safe and accepting therapeutic relationship, providing accommodations to support communication needs, and considering individual differences and preferences when selecting mental health strategies for autistic clients.

Brief Report: Replication of the Five-Factor Structure of the Autism Impact Measure (AIM) in an Independent Sample.

The Autism Impact Measure is a caregiver-reported, behaviorally based measure designed to assess both frequency and functional impact of core ASD symptoms in children. This study used confirmatory factor analysis to determine if the factor structure of the AIM (Repetitive Behavior, Communication, Atypical Behavior, Social Reciprocity, and Peer Interaction), previously reported by Mazurek et al. (Journal of Autism and Developmental Disorders 50: 2307-2319, 2020), was supported in a large (n = 611), independent sample. The sample was diverse in age (2-16 years) and IQ (M = 76.6, SD = 22.7), but was composed of approximately 80% males. There were some nuanced differences between this study and Mazurek et al. (Journal of Autism and Developmental Disorders 50: 2307-2319, 2020), but findings generally provided further evidence supporting the psychometric properties of the AIM.

Emergency Department Utilization Among Youth with Autism Spectrum Disorder: Exploring the Role of Preventive Care, Medical Home, and Mental Health Access.

The 2016-2018 National Surveys of Children's Health dataset was used to identify associations among preventive care, unmet health care needs, medical home access, and emergency department (ED) use among children and adolescents with autism spectrum disorder (ASD). Results indicated that youth with ASD had higher odds of using ED services if they had unmet mental health care needs (OR = 1.58, CI: 1.04-2.39) and lower odds of using ED services if they had access to a medical home (OR = 0.79, CI: 0.63-0.98). Findings suggest the importance of access to coordinated, comprehensive, and patient-centered care to address health care needs and prevent ED utilization among children and adolescents with ASD.

Longitudinal Examination of Sleep Problems and Symptom Severity in Children with Autism Spectrum Disorder.

Up to 80% of children with autism spectrum disorder (ASD) experience sleep problems, which have been associated with more severe presentations of ASD symptoms. We examined the bidirectional link between sleep problems and specific ASD symptoms at two time points within 5 years in a well-characterized sample (659 children with ASD). Using cross-lagged panel analyses, we found evidence for a unidirectional link between baseline ASD symptoms (specifically repetitive behaviors, atypical behaviors, communication, and peer interactions) and future sleep problems, but did not find evidence of a bidirectional relationship. We did not find any longitudinal association between social reciprocity and sleep problems. It is important for providers and caregivers to understand and monitor the link between ASD symptoms and sleep problems.

Measurement invariance of the Autism Impact Measure (AIM) across sex in children with autism spectrum disorder.

Measurement invariance, or the degree to which an instrument measures constructs consistently across subgroups, is critical for appropriate interpretations of measures. Given sex differences in the phenotypic and clinical presentation of autism spectrum disorder (ASD), it is particularly important to examine measurement invariance in autism instruments to ensure that ASD measures are not biased toward the more common male ASD phenotype. This study represents an important preliminary investigation evaluating the measurement equivalence of the Autism Impact Measure (AIM) across children and adolescents with ASD. The results indicated that the AIM demonstrated measurement invariance at the configural, metric, and scalar levels across sex in all five domains, including Repetitive Behavior, Communication, Atypical Behavior, Social Reciprocity, and Peer Interaction. These results suggest that ASD core symptoms assessed by the AIM were similar among male and female groups. In addition, the latent means for all five factors were not statistically significantly different across sex groups, revealing no systematic differences on any of the AIM subscales for males and females. Overall, this study showed that the AIM detects core ASD symptoms across all five areas equivalently in males and females and is not biased toward males with ASD.

Statewide Analysis Reveals Period of Well-Child Visit Attendance for Earlier Diagnosis of Autism Spectrum Disorder.

OBJECTIVE: To explore the relationship between well-child visit (WCV) attendance during early childhood and age at autism spectrum disorder (ASD) diagnosis using data drawn from a statewide all-payer claims database. STUDY DESIGN: We used a correlational study design with longitudinal data drawn from the Virginia All-Payer Claims Database. All children born in 2011 with a diagnosis of ASD were included (n = 253). Survival analysis determined the impact of WCV attendance on ASD diagnosis at each American Academy of Pediatrics-recommended early childhood visit, and the 5-year visit. RESULTS: Survival analysis revealed a significant impact of WCV attendance at the 24-month, 3-, and 4-year visits on earlier ASD diagnosis. Children who attended the 24-month visit were diagnosed nearly 10 months earlier than those who did not. Overall, children with ASD attended fewer than 50% of visits during early childhood. CONCLUSIONS: Promoting consistent WCV attendance during early childhood is an actionable strategy for improving early identification of ASD. Further exploration is needed to determine barriers to visit attendance and the impact of patterns of early childhood WCV attendance on age of ASD diagnosis. Development and implementation of interventions to promote adherence to the American Academy of Pediatrics-recommended visits is needed.

The Impact of the Comorbidity of ASD and ADHD on Social Impairment.

Children with autism spectrum disorder (ASD) and children with attention deficit/hyperactivity disorder (ADHD) both experience behavioral and social difficulties. Prior research has shown that when these disorders co-occur, behavioral symptoms associated with both disorders may be more severe. There is only limited research on the impact of ASD + ADHD comorbidity on social functioning. The present study investigated social impairment in 282 children diagnosed with ASD, ADHD, or ASD + ADHD. No significant differences in social impairment were found between the ASD and ASD + ADHD groups. This study contributes to extant literature indicating mixed findings in regard to social functioning amidst the ASD + ADHD comorbidity.

Protocol for targeting insomnia in school-aged children with autism spectrum disorder without intellectual disability: a randomised control trial.

INTRODUCTION: Insomnia affects up to 80% of children with autism spectrum disorder (ASD). Negative consequences of insomnia in ASD include decreased quality of life (QOL), impaired learning and cognition, increased stereotypic and challenging behaviours, and increased parental stress. Cognitive behavioural treatment for childhood insomnia (CBT-CI) is a promising treatment for dealing with insomnia and its negative consequences but has not yet been studied in school-aged children with ASD and comorbid insomnia. Access to healthcare is another challenge for children with ASD, particularly in rural and underserved regions. Previous studies indicate that ASD and insomnia share common arousal-based underpinnings, and we hypothesise that CBT-CI will reduce the hyperarousal associated with insomnia and ASD. This trial will be the first to examine CBT-CI adapted for children with ASD and will provide new information about two different modes of delivery across a variety of primary and secondary child and parent sleep and related outcomes. Knowledge obtained from this trial might allow us to develop new or modify current treatments to better target childhood insomnia and ASD. METHODS AND ANALYSIS: Children (N=180) 6-12 years of age with ASD and insomnia will be recruited from an established autism database, a paediatric clinic and community outreach in the Columbia, MO and surrounding areas. Participants will be randomised to CBT-CI adapted for children with ASD (in-person or remote using computers with cameras) or Sleep Hygiene and Related Education. Participants will be assessed at baseline, post-treatment, 6-month and 12-month follow-ups. The following assessments will be completed regarding the children: objective and subjective sleep, daytime functioning (adaptive functioning, attention, challenging behaviours, anxiety), QOL and physiological arousal (heart rate variability) and parents: objective and subjective sleep, daytime functioning (anxiety, depression, fatigue), QOL, physiological arousal and parental burden/stress. ETHICS AND DISSEMINATION: Ethics approval was obtained in January 2020 from the University of Missouri. Ethics approval was obtained in July 2020 from the US Army Medical Research and Development Command, Office of Research Protections and Human Research Protection Office. All data are expected to be collected by 2024. Full trial results are planned to be published by 2025. Secondary analyses of baseline data will be subsequently published. TRIAL REGISTRATION NUMBER: NCT04545606; Pre-results.

Unmet health care needs and health care quality in youth with autism spectrum disorder with and without intellectual disability.

LAY ABSTRACT: The increase in the prevalence of autism spectrum disorder has placed greater demands on the health care system. Children and adolescents with autism spectrum disorder often experience challenges accessing high-quality physical and mental health care due to characteristic social-communication deficits and behavioral difficulties, as well as high rates of complex medical and psychiatric comorbidities. Intellectual disability commonly co-occurs with autism spectrum disorder and individuals affected by this co-occurrence may have additional impairments that compound challenges accessing health care. This study investigated the relations among co-occurring intellectual disability, unmet physical and mental health care needs, and health care quality in a large, nationally distributed sample of youth with autism spectrum disorder using structural equation modeling techniques. Co-occurring intellectual disability was significantly associated with unmet mental health care needs in children with autism. In addition, unmet mental health care needs mediated the relationship between co-occurring intellectual disability and health care quality; youth with autism spectrum disorder and co-occurring intellectual disability who had a past-year unmet mental health need had significantly poorer caregiver-reported health care quality. These findings suggest that youth with autism spectrum disorder and co-occurring intellectual disability may be more likely to experience unmet mental health care needs and receive poorer quality of care than the broader autism spectrum disorder population.