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.
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
IntroductionAbout one in six children in the US, about 17% of the population, have one or more intellectual or developmental disabilities. Increases in disability due to neurodevelopmental or mental health conditions have increased by 21% in the last decade. Early intervention based on developmental screening and provider-initiated monitoring can significantly improve long-term health and cognitive outcomes. This paper assesses whether differences in receipt of developmental screening or monitoring are associated with access to a high-quality primary care medical home and having a provider who shows sensitivity to a family’s customs and values among neurotypical children and children with intellectual and developmental disabilities (IDD).MethodsWe used cross-sectional data from the National Survey of Children’s Health (NSCH) from 2017 to 2019. The NSCH is a nationally representative, parent-completed annual survey of children under 18. Children between 9 months and 5 years with IDD (n = 2,385) and neurotypical children (n = 20,200) were included in the analysis.ResultsUptake of developmental screening/monitoring in neurotypical children and children with IDD conditions was associated with belonging to minority race/ethnic backgrounds, specifically Black, Asian, and AIAN/NHPI, and single-parent households with lower incomes, being publicly insured or uninsured and not having access to a high-quality medical home. Weighted regression models showed that the odds of neurotypical children receiving developmental monitoring/screening were 53% higher when their healthcare provider always or usually demonstrated cultural sensitivity to the family’s values and customs (OR 1.53, 95% CI, 1.08–2.18, p < 0.05). For children with IDD, the odds of receipt of monitoring/screening increased by 2.1 times when the provider always/usually demonstrated an understanding of the family’s cultural norms (95% CI, 0.99–4.43, p = 0.053). Being female was significantly associated with a lack of screening/surveillance (OR 0.73, 95% CI, 0.58–0.91, p < 0.05).DiscussionWith the rising prevalence of children with IDD conditions, early identification of developmental delays and subsequent access to interventions are crucial steps in supporting children and children with IDD to receive preventive care, services, and reduce disparities in accessing quality care. Implementing culturally sensitive approaches can be a low-cost and effective intervention in improving rates of provider-initiated monitoring and parent-completed screening.
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.
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.
Autistic girls and women—defined broadly in the current chapter as autistic individuals assigned female at birth and/or currently identifying as female—experience disproportionate negative health outcomes, relative to non-autistic and autistic male populations. As researchers, practitioners, and individuals with lived experiences, the authors of the current chapter seek to inform efforts to address these significant barriers and, in turn, promote the health and well-being of autistic women across the life course.
Few funding sources have explicitly supported systems-wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition-age youth and young adults. We aimed to integrate findings from research produced through a five-year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP-funded published scientific studies. We charted study characteristics, topical domains, socio-ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio-ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population-level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants.
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.
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.
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.
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 neurodiversityoriented approach to health promotion.
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.
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 Autism Intervention Research Network on Physical Health (AIR-P) has a strong emphasis on cultivating the next generation of researchers committed to promoting the health and well-being of autistic individuals across the lifespan. As we begin our roles as scientists on this ambitious project, we are confronted with the tension between aspects of research culture that are both progressive and dynamic and outdated and static, particularly in the autism field. As we reflect on the current state of the field, we increasingly recognize the importance of conducting interdisciplinary research and using participatory methods to ensure that our research will enhance health outcomes for autistic individuals.Throughout our short careers, it has become readily apparent that the research community recognizes, at least in name, the value of working on diverse interdisciplinary teams, particularly with respect to addressing complex public health issues.1 We are acutely aware, however, of traditional research culture wherein mentors have historically encouraged trainees to master a single focal area and protect it as their own.2 In effect, we continuously experience conflicting messages. On one hand, we are urged to identify a narrow area of expertise, pursue it with fervor, and work to establish our independence as researchers. On the other hand, our experience in autism research requires us to approach complex problems from multiple angles, cultivate a vast array of methodological and theoretical tools, and cull together diverse teams.We believe that an interdisciplinary approach to research is an asset to early-career investigators’ professional development and to the field. We urge mentors to encourage early-career investigators to learn from peers in other fields, even those that do not, at face value, appear complementary. In practice, autism researchers would collaborate with physicians and clinicians, social justice advocates, educators, and other leaders and stakeholders. We believe that these collaborations will promote out-of-the-box thinking and dismantle antiquated models that do not further the development of innovative, health-promoting research for autistic individuals.Researchers underscore the critical role of participatory methods for autistic individuals.3 However, a pervasive undervaluing of the role of lived experiences still exists in shaping research questions and methodologies, which translates into an additive approach wherein the stakeholder perspective is layered on top of the empirical research study rather than sought out at the beginning to inform the research process in a meaningful way. When participatory methodologies are secondary to the research study, researchers often position those with lived experience in tokenistic roles that do an injustice to their perspectives in the research process.One of the earliest developments within the AIR-P is the Autistic Researcher Review Board. This group of international autistic researchers is tasked with reviewing all studies that will be supported within the AIR-P and developing collaborative theoretical articles and empirical research studies that will advance the field. As the neurodiversity movement continues to gain traction and individuals with neurodivergence continue to serve as self-advocates and assume prominent leadership positions, we hope that participatory research becomes the status quo in autism research.We call on our peers, early-career investigators, as well as colleagues steeped in traditional research culture, to join us in placing a precedent on moving the field of autism research forward through interdisciplinary and participatory approaches. We look forward to collaborating with novices and experts across disciplines in developing and implementing research that is directly responsive to lived experiences in an effort to address our broader goal of having a robust impact on the health and well-being of autistic individuals across the lifespan.
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.
Background: Globally, Neurodivergent, Disability, and Chronic Illness (NDCI) populations face significant health disparities. Lack of physician knowledge about NDCI is a key mechanism underlying these disparities. The current study aimed to describe medical students’ perceptions, knowledge, and competence regarding NDCI. Methods: A cross-sectional study was carried out using an online survey of medical students at a large public university with no NDCI-specific curriculum (n = 97; response rate = 18%). The survey asked about students’ perceptions, knowledge, and competence pertaining to NDCI populations. Results: Most (n = 93, 96%) indicated it is important for physicians to understand the influence of NDCI on patient health and clinical encounters. Yet, only 7 (7%) and 15 (15%) reported that the NDCI curriculum in their medical school was sufficient and they felt comfortable taking care of patients with NDCI, respectively. Most (n = 87, 90%) wanted their medical school to provide additional NDCI training. Few reported high knowledge about ableism (n = 12, 12%), self-determination (n = 7, 7%), coordinating care (n = 4, 4%) and accommodations (n = 10, 10%). Few indicated high competence in cognitive, physical, social-emotional, and other NDCI types (n = 7 – 32, 7-33%). Existing knowledge often came from personal experiences or the news and media. Conclusion: Findings demonstrated the gaps in medical education, as exemplified by medical students surveyed in one U.S. public university. Results can inform efforts to ameliorate global health disparities associated with a lack of physician knowledge about NDCI.
Autism is estimated to have a heritability component of ∼90%.1 This estimate is based on the reported concordance rates of 70% to 90% between monozygotic twins compared with 10% concordance in dizygotic twins.2,3 Furthermore, siblings of autistic individuals carry a >17 times higher likelihood of being on the autism spectrum compared with the general population.3 Although a significant proportion of genetic and molecular mechanisms related to autism remain unclear, researchers have reported findings that suggest both rare Mendelian and polygenic, multifactorial patterns of inheritance. For example, chromosomal microarray testing may identify a genetic etiology in up to 20% of autistic individuals.4,5Given this extent of genetic heritability, large-scale genetic testing and tracking within databases are beneficial in informing both research and clinical practice. The developers of these datasets aim to identify specific gene interactions and assess individual gene contributions while advancing the diagnostic yield of genetic testing.6 The Autism Intervention Research Network on Physical Health genetics research node is poised to help to facilitate the creation of registries for rare and orphan diseases that commonly co-occur with autism. An aim of the Autism Intervention Research Network on Physical Health data repository is to collect this information through the use of data-gathering materials designed to ease the burden on families and support groups wanting to initiate new registries.An important distinction to note is that genetic testing is not used to diagnose autism. An autism diagnosis is based on the presence of defined clinical characteristics. Although genetic test results may reveal the origin of autism in an individual or provide information about the statistical likelihood of being on the autism spectrum, they can also be used to improve the physical health and well-being of autistic individuals by identifying co-occurring medical conditions. Genetic testing may inform a specific diagnosis (eg, fragile X syndrome, Rett syndrome) that could ultimately establish a personalized roadmap for identifying syndrome-associated co-occurring conditions, instituting surveillance, and developing interventions or treatments specific to the genetic etiology. Furthermore, the individual diagnosis may lead to diagnosis-specific community support and help to guide family planning efforts.Despite the American College of Medical Genetics and Genomics establishing fragile X and chromosomal microarray testing as standard-of-care, first-tier tests in the genetic evaluation of autistic individuals,7,8 a surprisingly low number of autistic individuals receive these recommended genetics tests. One recent study with 1280 participants revealed that although 16.5% of participants had some genetic testing done, only 3% had received both recommended tests.9 Moreover, well-documented racial and ethnic disparities exist in the timely identification and genetic screening of autistic individuals. Black, Hispanic/Latinx, and other children of color, particularly those with co-occurring intellectual disabilities, are more likely to have a missed or delayed diagnosis of autism.10–12 Unfortunately, this inequality in the care of autistic individuals, and particularly for Black children, is also observed in the context of genetic screening and counseling.13 Overall, approximately two-thirds of autistic children receive some form of genetic screening and/or counseling; however, Black children are much less likely than their White peers to be offered these services.13 The majority of parents of autistic children actually favor the use of genetic screening and counseling because they believe that the increased knowledge empowers and helps them to intervene earlier than they might have otherwise.14Our goal is to increase awareness regarding the importance and utility of genetic screening and counseling in the lives of autistic individuals and their families. Novel intervention strategies need to be implemented to improve access to such services so that autistic people can be empowered to make informed decisions surrounding the lifestyle interventions and care they wish to pursue.
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.
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.