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.

Impact of adverse childhood experiences and family resilience on sleep duration in autistic children.

LAY ABSTRACT: Autistic children are more likely to have sleep difficulties and to experience adverse childhood experiences. Adverse childhood experiences can include parental divorce, bullying, or witnessing violence. We also know that children in families who are resilient (e.g. families who are connected, work together, and help each other) are less impacted by adverse childhood experiences. Our study examined whether there was a relationship between adverse childhood experiences and sleep duration in autistic children. We also wanted to find out whether family resilience protects from the negative impact of adverse childhood experiences on sleep duration. We used data from 3247 parent surveys about their children that we got from the National Survey of Children's Health. We found that children with adverse childhood experiences are more likely to get less sleep. We also found that children with resilient families were more likely to get more sleep. Our results show that family resilience helps weaken the relationship between adverse childhood experiences and sleep, so it is important to help families build resilience.

Understanding autism diagnosis in primary care: Rates of diagnosis from 2004 to 2019 and child age at diagnosis.

LAY ABSTRACT: The current demand for autism diagnostic services exceeds the ability of the workforce to assess and diagnose children in a timely manner. One solution may be to equip primary care providers (PCPs) with the tools and expertise needed to diagnose autism within their practice. PCPs are often trusted professionals who have many touchpoints with children during early development, in which they can identify early signs of autism. Recent initiatives have focused on bolstering PCPs' diagnostic capabilities; however, no studies have examined how the rates of autism diagnosis in primary care have changed over time. We aimed to evaluate whether autism diagnosis in primary care has changed over time and how diagnosis in primary care relates to a child's age at the time of diagnosis. We found that the likelihood of a child being diagnosed by a PCP decreased by about 2% with every passing year from 2004 to 2019 when accounting for demographic characteristics. In our sample, PCPs diagnosed children approximately 1 year earlier than non-PCPs (e.g., psychologists and psychiatrists). Further research is needed to understand why the proportion of children diagnosed by PCPs decreases over time. However, this decrease suggests more work is needed to get capacity-building initiatives into community primary care practice. Though we must continue to find effective ways to build community PCPs' ability to diagnose autism, the present findings support the crucial role PCPs can play in early autism diagnosis.

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.

Randomized controlled trial of propranolol on social communication and anxiety in children and young adults with autism spectrum disorder.

RATIONALE: Autism spectrum disorder (ASD) is characterized by impaired social communication and is also frequently characterized by co-occurring anxiety. Propranolol is widely utilized to treat performance and public speaking anxiety. Single-dose psychopharmacological challenge studies suggested benefits using propranolol for verbal tasks and social interaction. OBJECTIVE: We conducted a double-blinded, placebo-controlled trial of the ß-adrenergic antagonist propranolol in ASD for social interaction, anxiety, and language. METHODS: Seventy-four participants with ASD, age 7-24 years, were enrolled and randomized to a 12-week course of propranolol or placebo, with blinded assessments at baseline, 6 weeks, and 12 weeks. The primary outcome was the General Social Outcome Measure-2 (GSOM-2) for social interaction, and secondary outcomes were the Clinician Global Clinical Impression-Improvement (CGI-I) ratings independently conducted for social interaction, anxiety, and language at 6 weeks and 12 weeks. RESULTS: Sixty-nine participants completed the 12-week visit. No significant effect of drug was found for the GSOM-2 or the CGI-I for social interaction or language. CGI-I for anxiety showed greater improvement with propranolol at the 12-week time point (p = 0.045, odds ratio = 2.58 (95% CI = 1.02-6.52). Expected decreases in heart rate and blood pressure were observed with propranolol, and side effects were uncommon. CONCLUSIONS: Propranolol did not impact social interaction measures or language, but there were indications of a beneficial effect for anxiety. This will need confirmation in a larger multicenter trial, monitoring markers or characteristics to identify those participants most likely to respond to propranolol for anxiety, and determine whether there is a subset of participants that are responsive for other previously reported outcomes.

Snack Talk: Effects of a Naturalistic Visual Communication Support on Increasing Conversation Engagement for Adults with Disabilities.

Adults with intellectual and developmental disabilities frequently experience poor life outcomes, with individuals reporting lower levels of social support, relationships, gainful employment, and satisfaction in their quality of life. To ameliorate these outcomes, social skills and social communication interventions aligned with the needs of adults are warranted. This study examined the efficacy of Snack Talk, a supplemental naturalistic visual communication support, with five adults with intellectual and developmental disabilities. Snack Talk was implemented during the midday mealtime, with the goal of increasing conversation engagement. A withdrawal design across participants was used. Results demonstrated increases in conversation engagement and showed meaningful gains for participants in the intervention and postintervention phase compared to baseline.

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.

ECHO autism adult healthcare: Training community clinicians to provide quality care for autistic adults.

Autistic adults experience significant unmet healthcare needs, with opportunities for improvement in both the systems and the practitioners who serve this population. Primary care physicians/practitioners (PCPs) are a natural choice to provide comprehensive care to autistic adults but often lack experience in serving this population. This pilot study developed and tested an Extension for Community Healthcare Outcomes (ECHO) Autism model adapted from our previous work, focused specifically on training PCPs in best-practice care for autistic adults. The project was informed directly by the perspectives and preferences of autistic adults, caregivers, and PCPs. Two consecutive cohorts of PCPs participated in ECHO Autism Adult Healthcare sessions. Each cohort met 1 h twice a month for 6 months, with 37 PCPs (n = 20 in Cohort 1, and n = 17 in Cohort 2) participating. Based on findings from the first cohort, adjustments were made to refine the session preparation, curriculum, conduct of the ECHO, resources, and evaluation. After participation in the ECHO Autism program, PCP self-efficacy and satisfaction improved, while the number of perceived barriers did not change. Knowledge did not improve significantly in Cohort 1, but after adjustments to the training model, participants in Cohort 2 showed significant knowledge gains. While attention to systems of care is critical to addressing barriers in healthcare in the autistic population, the ECHO Autism Adult Healthcare model is feasible and holds promise for improving PCP satisfaction and self-efficacy in working with autistic adults.

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.

Friendship and Anxiety/Depression Symptoms in Boys With and Without Autism Spectrum Disorder.

The transition to adolescence may be a challenging time for individuals with autism spectrum disorder (ASD). This developmental period is marked by increased social demands and increasing anxiety and depression symptoms for many individuals with autism. As both of these factors may compound social difficulties and impact friendship experiences, this study explored the relations among autism symptom severity, internalizing symptoms, and friendship experiences in boys with and without ASD (with IQ > 75). Results showed that internalizing symptoms predicted quantity of close friendships in the ASD group. Given the observed relationship between internalizing symptoms and friendship experiences, social skills intervention programs should address possible internalizing symptoms associated with establishing/maintaining social relationships and perceived friendship quality.

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.