Enhancing multi-site autism research through the development of a collaborative data platform.

Data repositories, particularly those storing data on vulnerable populations, increasingly need to carefully consider not only what data is being collected, but how it will be used. As such, the Autism Intervention Research Network on Physical Health (AIR-P) has created the Infrastructure for Collaborative Research (ICR) to establish standards on data collection practices in Autism repositories. The ICR will strive to encourage inter-site collaboration, amplify autistic voices, and widen accessibility to data. The ICR is staged as a three-tiered framework consisting of (1) a request for proposals system, (2) a REDCap-based data repository, and (3) public data dashboards to display aggregate de-identified data. Coupled with a review process including autistic and non-autistic researchers, this framework aims to propel the implementation of equitable autism research, enhance standardization within and between studies, and boost transparency and dissemination of findings. In addition, the inclusion of a contact registry that study participants can opt into creates the base for a robust participant pool. As such, researchers can leverage the platform to identify, reach, and distribute electronic materials to a greater proportion of potential participants who likely fall within their eligibility criteria. By incorporating practices that promote effective communication between researchers and participants, the ICR can facilitate research that is both considerate of and a benefit to autistic people.

Meta-analysis of Psychotherapy for Autistic Youth.

In order to provide more individualized support, it is imperative to further understand the effectiveness of different types of psychotherapy on the clinical areas of need common in autistic youth (Wood et al. in Behav Ther 46:83-95, 2015). Randomized controlled trials of psychotherapy for autistic youth were included if published in English, included random assignment to treatment or control group, required a previous diagnosis of autism, had a mean age of 6-17 years, and provided outcome measure data from both intervention and control groups. A total of 133 measures were coded across 29 studies and included 1464 participants with a mean age of 10.39 years (1.89). A small mean effect size (0.38,95% CI [0.26, 0.47]) was found overall, with the largest effects for cognitive behavioral therapies on autism-related clinical needs (0.81) and overall mental health (0.78). The results show the significant impact of psychotherapy interventions for autistic youth. Additional research should further assess the details of the most effective psychotherapies for each area of clinical need.

Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research.

High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families.

Practitioner Adherence and Competence in MEYA, a Free Online Self-Instruction Program in Modular Psychotherapy and Counseling for Children's Autism-Related Clinical Needs.

The quality of care in public schools and other community settings for school-aged youths on the autism spectrum is variable and often not evidence-based. Training practitioners in these settings to deliver evidence-based practices (EBPs) may improve the quality of care. We developed a free internet-based training and clinical guidance system synthesizing multiple EBPs for youth on the autism spectrum addressing a range of mental health needs and autism-related behaviors, entitled Modular EBPs for Youth on the Autism Spectrum (MEYA; meya.ucla.edu). A multiple baseline study was conducted with seven practitioners recruited from mental health practice settings across the United States who were providing services to children on the autism spectrum (aged 6 to 17 years). Practitioners were randomly assigned to undergo baseline conditions of 2 to 8 weeks. Once online training in MEYA commenced, practitioners engaged in algorithm-guided self-instruction in EBPs for autism. Participants video-recorded sessions. Independent coders used the MEYA Fidelity Scale (MEYA-FS) to rate adherence and competence in EBPs for autism. Practitioners also completed measures pertaining to implementation outcomes and parents rated youth outcomes on personalized target behaviors. Five of seven practitioners increased their adherence to MEYA practices (i.e., MEYA-FS scores) following MEYA training. Findings for competence were similar, though somewhat less robust. Practitioners generally viewed MEYA as feasible, understandable, and acceptable. Most youth outcomes improved during MEYA. A randomized, controlled trial of MEYA would be helpful in characterizing its effectiveness for supporting practitioner EBP implementation and youth outcomes in school and community service settings.

Knowledge is Power: Rethinking Healthcare for Culturally and Linguistically Diverse Patients.

Autism is a developmental disability that exists across racial, ethnic, linguistic, and socioeconomic boundaries. Unfortunately, the lived experiences of autistic individuals and their families as supported by evidence in the existing literature suggest that culturally and linguistically diverse families' engagement in healthcare and education face a multitude of challenges, particularly during high-stakes meetings and healthcare appointments (e.g., Individualized Education Plan meetings, patient visits, and diagnostic results interpretation meetings). These challenges prevent culturally and linguistically diverse autistic individuals from accessing adequate care. In this paper, we propose solutions to be adopted by healthcare and education systems to address those challenges. First, we urge providers to address the systemic problems that commonly occur during meetings. Second, we propose service providers adopt a cultural and linguistic 'match' process. We recommend asking families about their specific language preferences and ensuring the selection of translators who speak the family's preferred language and dialect. Employing these transformations will require education and healthcare systems to allocate more resources for translation services to enhance the training and recruitment of interpreters and ensure that interpreter-family pairs are provided time for consultation prior to high-stakes meetings. Ultimately, these adaptations to the service provision environment would produce opportunities for translators to act as cultural liaisons and, with time, become trusted partners for families.

Updates to the Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda.

INTRODUCTION: Autistic individuals, now representing one in 36 individuals in the U.S., experience disproportionate physical health challenges relative to non-autistic individuals. The Health Resources and Services Administration's (HRSA) Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multi-center Research Network that aims to increase the health, well-being, and quality of life of autistic individuals. The current paper builds on the initial AIR-P Research Agenda (proposed in Year 1) and provides an updated vision for the Network. METHODS: Updates to the Research Agenda were made via the administration of a Qualtrics survey, and disseminated widely to all AIR-P entities, including the Research Node Leaders, Steering Committee, Autistic Researcher Review Board, and collaborating academic and non-academic entities. Network members were tasked with evaluating the Year 1 Research Agenda and proposing additional priorities. RESULTS: Within each Research Node, all Year 1 priorities were endorsed as continued priorities for research on autism and physical health. Specific topics, including co-occurring conditions and self-determination, advocacy, and decision-making, were particularly endorsed. Opportunities for exploratory studies and intervention research were identified across Research Nodes. Qualitative responses providing feedback on additional research priorities were collected. CONCLUSION: The updated AIR-P Research Agenda represents an important step toward enacting large-scale health promotion efforts for autistic individuals across the lifespan. This updated agenda builds on efforts to catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health promotion.

Implementation of a Minimal Sedation Protocol for Patients With Developmental Disabilities and Needle Phobia.

Objective Patients with intellectual and developmental disabilities (IDD) experience needle phobia at greater rates than individuals in the general population. Needle phobia deters patients with IDD from receiving routine medical procedures, which impacts their physical health outcomes. The aim of this quality improvement study was to assess the feasibility of a minimal sedation protocol in an outpatient care setting for patients with IDD and needle phobia. Methods The sample included 18 patients characterized as having a diagnosis of IDD only or IDD and needle phobia compared to patients with only a diagnosis of needle phobia. Reasons for referral to intervention included routine lab work, therapeutic drug monitoring, and routine vaccination. The minimal sedation intervention involved intranasal administration of a benzodiazepine (midazolam) by a registered nurse. Outcomes of interest were administration of the sedation and administration of medical orders. Results Nearly a third of patients were children (33.3%, n=6), and 39% of patients were female (n=7). Individuals with IDD (including those both with and without needle phobias) comprised 72.2% of patients (n=13). Half of intervention encounters were successful in both administering the sedation and performing the medical orders (n=9). Among individuals with IDD, 38.4% successfully completed the intervention (n=5). Conclusion This pilot study assessed the feasibility of implementing a minimal sedation protocol in primary care outpatient care settings. The preliminary results suggest that the minimal sedation protocol may improve the uptake of needle-related medical procedures for patients with IDD and/or needle phobia. The minimal sedation protocol should be studied in a larger sample and among multiple outpatient settings to establish effectiveness of the intervention.

The Needle Anxiety Program: A Patient-Centered Initiative for Individuals With Developmental Disabilities.

Objective To describe the development process of a patient-centered initiative focused on improving primary care health outcomes of patients with intellectual and developmental disabilities (IDD) and needle-related anxiety using evidence-based practices and novel approaches that can be implemented in outpatient settings. The overall outcome of the program is to increase vaccine uptake and accessibility in the IDD population as well as improve needle-related procedures in primary care settings to be more humane and effective. Methods The development process occurred in the context of a large healthcare system serving a diverse patient population in the U.S. and was led by an expert committee made of an multidisciplinary team of physicians, psychologists, ambulatory and clinic nurses, pharmacists, and anesthesiologists committed to promoting quality healthcare for the IDD population. Committee members were recruited within the healthcare system based on their relevant expertise. The methodology included an iterative and collaborative process that took place over three development phases: ideation and design, literature review and synthesis, and expert engagement. The ideation and design phase included a series of planning meetings among the expert committee, in which committee members identified preliminary concerns based on their expertise in the field and background knowledge on the current procedures related to improving routine care for individuals with IDD and/or needle-related anxiety. The literature review and synthesis phase led to the development of an annotated bibliography of research and clinical guidelines that synthesized findings on needle anxiety in clinical care. The expert engagement phase included all Committee members meeting for a final discussion to establish a tiered approach to utilizing evidence-based strategies that could be implemented across clinics within the healthcare system.  Results The multidisciplinary team of experts developed a three-tier system, deployed sequentially as needed. The first tier focuses on training nurses in evidence-based behavioral modification strategies to implement as standard of care. The second tier uses the addition of a distraction device and topical analgesic to reduce anxiety in patients with slightly elevated procedural anxiety. The third tier involves a novel minimal sedation protocol using intranasal midazolam for patients with needle phobia that can be administered in an outpatient setting. Conclusion The Needle Anxiety Program eases the administration of needle-related medical procedures in the primary care setting for patients with IDD and needle-related anxiety. The use of evidence-based practices and a novel minimal sedation protocol for individuals with needle phobia assists in the completion of routine healthcare procedures, such as vaccinations and phlebotomy, in a patient-preferred setting. The purpose of delineating needle-related processes and procedures through the Needle Anxiety Program is to reduce health disparities for patients with IDD and promote uptake of the Needle Anxiety Program in similar healthcare settings.

Anxiety and Depression in Autistic College Students: The Freshman Survey Results.

Objective Mental health among undergraduate students is a growing concern in higher education, but relatively little is known about the mental health of autistic college students. In order to better understand the unique needs of this population, the present study examines whether demographic and psychosocial correlates of anxiety and depression differ in autistic first-year college students and their non-autistic peers.  Methods Secondary data analysis was conducted utilizing population-weighted data of full-time college students in their first year attending four-year colleges and universities in 2016, 2018, and 2019. Autistic and non-autistic students who self-identified as having frequent anxiety or depression were compared in terms of demographic characteristics, physical and emotional health, and academic aspirations and achievement. Results The majority of first-year students with frequent anxiety or depression in this sample tended to be white and had parents who completed a bachelor's degree or went to graduate school, with higher rates of male students in the autistic group. While autistic college freshmen with frequent anxiety or depression self-report lower overall quality of physical health (below average or lowest 10% reported by 57.3% vs. 37.1%) and higher rates of learning disabilities (25.3% vs. 4.6%) and psychological disorders (62.3% vs. 29.3%), these students also tend to outperform their non-autistic peers on standardized academic testing. Conclusion As autistic students are investing in themselves through their education and future careers, practitioners and researchers alike should be investing in accessible physical and mental health services in order to help set autistic students up for success in college and beyond.

Considerations for Expanding Research and Clinical Care for the Neurodivergent Gender Diverse Population.

Little is currently known about the relationship between gender diversity and neurodiversity, although a growing body of researchers and clinicians are searching for more information to better serve this population. Gender-diverse individuals are three to six times more likely than cisgender individuals to identify as autistic or to report possible undiagnosed autism or autistic traits. Many gender-diverse individuals experience a shortage of gender-affirming medical care and are disproportionately impacted by barriers to mental health services. Similarly, autistic individuals report that the most common barrier to care is a lack of knowledgeable providers and/or resistance from providers to tailor care toward their specific needs. Two key areas in need of further research are 1) clinical approaches to gender-affirming medical and mental health care for neurodivergent patients and 2) the prevention and treatment of suicidality in gender-diverse neurodivergent individuals. Increasing collaborations amongst gender-diverse neurodivergent individuals, researchers, and clinicians are needed in order to further research and clinical practice to most directly and effectively improve physical and mental health care for the gender-diverse neurodivergent patient population.

Treatment Fidelity and Outcome in CBT for Youth with Autism: The MEYA Fidelity Scale.

OBJECTIVE: Assessing treatment fidelity in effectiveness research is critical to interpreting study findings. This paper details the development and initial psychometric evaluation of the Modular Evidence-Based Practices for Youth with Autism Fidelity Scale (MEYA-FS) designed to support the assessment of cognitive-behavioral treatments for youth with autism in effectiveness research. METHOD: Recorded treatment sessions (N = 338) were randomly selected from 77 youth (M age = 9.65 years, SD = 1.87; 50.67% White; 85.33% male) who received the Schema, Emotion, and Behavior-Focused Therapy for Children (SEBASTIEN) (n = 51) or Coping Cat (n = 24) program. RESULTS: The MEYA-FS Adherence items displayed acceptable interrater reliability, but more than half of the MEYA-FS Competence items did not. The magnitude and pattern of correlations supported the score validity of the MEYA-FS Adherence and Competence items and subscales. However, some corresponding Adherence and Competence items displayed significant overlap. Scores on each Adherence subscale distinguished between the SEBASTIEN and Coping Cat programs, providing support for discriminant validity. Finally, higher Adherence and Competence subscales predicted significant improvements in youth clinical outcomes (adjustment problems in the school setting, social-communication difficulties, restrictive/repetitive behaviors, and externalizing problems), providing initial evidence for predictive validity. CONCLUSIONS: The psychometric properties of the MEYA-FS make it appropriate for supporting efforts to evaluate cognitive-behavioral interventions for youth with autism in effectiveness and implementation research.

A mixed methods investigation of college student mental health during the first year of the COVID-19 pandemic.

OBJECTIVE: Researchers collaborated with undergraduate minority students to quantitatively and qualitatively investigate college students' mental health during the first year of the COVID-19 pandemic. PARTICIPANTS: Participants were two convenience samples of diverse college students surveyed in June (n = 128; M age = 21.7, SD = 1.7) and December (n = 242; M age = 20.3, SD = 1.7) of 2020. METHODS: This study administered items from the California Health Interview Survey and open-ended qualitative items via Qualtrics. RESULTS: Across both waves, students reported significant mental health challenges and psychological distress. Students surveyed in December were three to four times more likely to report depression and anxiety. Female and older students reported heightened odds of mental health challenges. Qualitative findings elaborated on contributing factors. CONCLUSION: During the pandemic, college students have experienced pronounced mental health challenges, potentially exacerbated by academic, professional, relational, and environmental stressors and uncertainty.

The Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda.

OBJECTIVES: In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda. METHODS: Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement. RESULTS: Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities. CONCLUSIONS: The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion.

A National Cross-Sectional Study of the Characteristics, Strengths, and Challenges of College Students With Attention Deficit Hyperactivity Disorder.

INTRODUCTION: A substantial proportion of college students experience challenges transitioning from pediatrics to the adult healthcare system. Combined internal medicine and pediatrics (Med-Peds) providers are frequently tasked with facilitating this transition and promoting the health and well-being of this population. There is an increasing proportion of college students with Attention Deficit Hyperactivity Disorder (ADHD) in the U.S. This population experiences particularly pronounced challenges navigating the healthcare system and, as a result, often contends with fragmented healthcare. These issues are due to a range of factors, including lack of physician training, education, and resources, as well as a dearth of available research that can inform Med-Peds providers' efforts to support college students with ADHD. METHODS: The current study compared a nationally representative sample of U.S. college freshmen with ADHD to those without ADHD on health, academic, and non-academic capacities. This study analyzed population-weighted data from the Cooperative Institutional Research Program's Freshman Survey. RESULTS: Students with ADHD were more likely to report co-occurring conditions and feelings of depression and overwhelm. They were less likely to report emotional health that was above average or in the highest 10th percentile. Although they reported lower overall academic aspirations, they were more likely to rate themselves in the highest 10th percentile on a range of non-academic capacities. CONCLUSION: The results from this study can inform efforts among Med-Peds providers seeking to promote the health and well-being of college students with ADHD.

Capturing the Experiences and Challenges of Emerging Adults in College During the COVID-19 Pandemic.

Emerging adulthood (ages 18-30 years) coincides with "aging out" of pediatric care. As a result, combined internal medicine and pediatrics (Med-Peds) providers are tasked with promoting the health and well-being of this population during and post-coronavirus disease 2019 (COVID-19). In order to inform the response efforts, we aimed to capture emerging adults' COVID-19 experiences and challenges during a two-week period of the pandemic in June 2020. We administered items from the California Health Interview Survey and an open-ended qualitative item via Qualtrics to 242 diverse emerging adults enrolled in a large US public university (mean age = 20.10, SD = 1.26). More than 90% of all students reported that they or their families or close friends experienced difficulties coping with the stressors and challenges presented by COVID-19. Almost half experienced financial difficulties and more than three-fourths experienced household disruptions during the pandemic. Qualitative findings underscored that these challenges were compounded by mental health and broader social issues. Recommendations for Med-Peds providers are provided to promote emerging adulthood health during and post-pandemic.

Modular cognitive behavioral therapy for autism-related symptoms in children: A randomized controlled trial.

OBJECTIVE: To date, no one-on-one psychotherapy protocol for elementary and middle school-aged children with autism spectrum disorder (ASD) has been found to be efficacious for treating autism-related symptoms such as failure to initiate social interactions. This study compared modular cognitive behavioral therapy (CBT) with enhanced standard community treatment (ESCT) in terms of impact on the severity of autism-related symptoms. METHOD: Children with ASD (N = 107; aged 6-13 years) were randomly assigned to a treatment condition (CBT or ESCT). Both treatments provided 32 therapy sessions. The CBT condition utilized a modular design, matching specific evidence-based treatment elements to each child's clinical needs (e.g., social-communication symptoms). The ESCT condition provided social skills training and cognitive behavioral training in a structured and linear group therapy format. The primary outcome measure was independent evaluator ratings of peer engagement during school recess using a structured and validated observation system. Parents also made session-by-session ratings on personalized autism-related symptom profiles throughout treatment. RESULTS: CBT outperformed ESCT on the primary outcome measure (p < .001; d = .50; 95% CI [.06, .93]) and the secondary outcome measure (p = .003; d = .87; 95% CI [.45, 1.27]). CONCLUSIONS: The modular one-on-one CBT program evaluated in this study may be beneficial for reducing the severity of autism-related symptoms in some children with ASD. Further research is needed to clarify the extent of the treatment effect and the feasibility of implementation for therapists in the community. (PsycInfo Database Record (c) 2021 APA, all rights reserved).