The Effect of Iron Supplements on the Gut Microbiome of Females of Reproductive Age: A Randomized Controlled Trial.

BACKGROUND: Iron deficiency is the most common nutritional deficiency worldwide, particularly for young children and females of reproductive age. Although oral iron supplements are routinely recommended and generally considered safe, iron supplementation has been shown to alter the fecal microbiota in low-income countries. Little is known about the effect of iron supplementation on the fecal microbiota in high-income settings. OBJECTIVES: To assess the effect of oral iron supplementation compared with placebo on the gut microbiome in nonpregnant females of reproductive age in a high-income country. METHODS: A 21-d prospective parallel design double-blind, randomized control trial conducted in South Australia, Australia. Females (18-45 y) were randomly assigned to either iron (65.7 mg ferrous fumarate) or placebo. Fecal samples were collected prior to commencing supplements and after 21 d of supplementation. The primary outcome was microbiota ß-diversity (paired-sample weighted unique fraction metric dissimilarity) between treatment and placebo groups after 21 d of supplementation. Exploratory outcomes included changes in the relative abundance of bacterial taxa. RESULTS: Of 82 females randomly assigned, 80 completed the trial. There was no significant difference between the groups for weighted unique fraction metric dissimilarity (mean difference: 0.003; 95% confidence interval: -0.007, 0.014; P = 0.52) or relative abundance of common bacterial taxa or Escherichia-Shigella (q > 0.05). CONCLUSIONS: Iron supplementation did not affect the microbiome of nonpregnant females of reproductive age in Australia. This trial was registered at clinicaltrials.gov as NCT05033483.

Expenditures and Healthcare Utilization of Patients Receiving Care at a Specialized Primary Care Clinic Designed with and for Autistic Adults.

BACKGROUND: We previously found that autistic adults who received care through a primary care embedded specialized clinic, called the Center for Autism Services and Transition (CAST), had higher satisfaction, continuity of care, and preventive care use than national samples of autistic adults. OBJECTIVE: Examine the impact of CAST on healthcare utilization and expenditures. DESIGN: Retrospective study of medical billing data. SAMPLE: CAST patients (N = 490) were propensity score matched to Medicare-enrolled autistic adults (N = 980) and privately insured autistic adults (N = 980) using demographic characteristics. The median age of subjects was 21 years, 79% were male, and the median duration of observation was 2.2 years. MAIN MEASURES: We quantified expenditures and utilization for primary care; emergency department (ED) visits; inpatient hospitalizations; mental health admissions; and outpatient visits. KEY RESULTS: CAST patients had the highest primary care utilization and expenditures. However, CAST patients had significantly lower expenditures than Medicare-enrolled autistic adults for mental health admissions ($1074 vs $1903), outpatient visits ($1671 vs $2979), and total expenditures ($5893 vs $6987), as well as 57% fewer inpatient hospitalizations. Compared to privately insured autistic adults, CAST patients had significantly lower expenditures for mental health admissions ($1074 vs $1362), inpatient hospitalizations ($3851 vs $4513), and outpatient visits ($1671 vs $6070), as well as 16% fewer inpatient hospitalizations, 24% fewer ED visits, and 50% fewer outpatient visits. On average, CAST patients had more ED visits, mental health admissions, and outpatient visits than Medicare-enrolled autistic adults and more mental health admissions than privately insured autistic adults. CONCLUSIONS: Although CAST patients had greater primary care utilization and expenditures, our findings suggest embedding specialized clinics within broader primary care settings could be an alternative to current standards of care and may reduce expenditures and healthcare utilization in other areas, particularly relative to standard care for privately insured autistic adults.

Five Ways Providers Can Improve Mental Healthcare for Autistic Adults: A Review of Mental Healthcare Use, Barriers to Care, and Evidence-Based Recommendations.

PURPOSE OF REVIEW: We reviewed the literature from 2017 to 2022 on autistic adults' use of mental healthcare and barriers to care. To encourage immediate improvement in mental healthcare, we provide five strategies mental health providers can use to better care for autistic adults. RECENT FINDINGS: Most autistic adults use mental healthcare and use it more often than non-autistic adults. Autistic adults' experiences with mental healthcare are characterized by (1) lack of providers knowledgeable about autism, (2) use of treatments that may not be accommodating to individual needs, and (3) difficulty navigating the complex healthcare system. These barriers contribute to prevalent unmet needs for mental healthcare. Autistic adults use mental healthcare frequently but have unmet mental health needs. As necessary systemic changes develop, providers can begin immediately to better care for autistic adults by learning about their needs and taking personalized care approaches to meet those needs.

Health Services Research and Occupational Therapy: Ensuring Quality and Cost-Effectiveness.

Health services research focuses on access, quality, and cost-effectiveness of care. As a result of increasing emphasis on value-based reimbursement models, conducting health services research to demonstrate the value of occupational therapy is timely. This special issue serves to highlight health services research relevant to occupational therapy practice. Articles included in this special issue describe (1) clients' access to and use of occupational therapy, (2) the effects of occupational therapy on important quality-of-care indicators and client outcomes, and (3) the value of occupational therapy services through the lens of cost-effectiveness. This special issue illustrates the state of health services research in the field of occupational therapy and reveals key insights to advance occupational therapy practice using health services research.

Healthcare providers' role in providing sexual and reproductive health information to people with intellectual and developmental disabilities: A qualitative study.

BACKGROUND: Individuals with intellectual and developmental disabilities demonstrate disparities in sexual and reproductive health (SRH) compared to individuals without disabilities (e.g., lack of sexual education and knowledge, increased rates of abuse, unplanned pregnancies and sexually transmitted infections). Therefore, the purpose of this study was to identify topics healthcare providers address and perceived barriers and supports to SRH education. METHODS: We conducted semi-structured interviews with healthcare providers (N = 12). RESULTS: Providers address relationships, safety, protection and appropriate sexual behaviours with clients with intellectual and developmental disabilities. Parent education and client-centred care were identified as supports, while the patient's level of understanding, the provider's lack of knowledge or access to resources and to appropriate referrals were identified as barriers to SRH education. CONCLUSION: Future studies are needed to link providers to resources they can use to provide comprehensive, accessible SRH education for clients with intellectual and developmental disabilities.

Clinical Utility and Validity of Exercise Vital Sign in Children.

ABSTRACT: We reviewed charts of 14,446 sports medicine patients, children aged 5 to 18 years, over a 3-year period to determine the discriminant validity of Exercise Vital Sign (EVS) questions. A logistic regression analyzed factors related to any moderate to vigorous physical activity (MVPA). A linear regression analyzed factors related to amount of MVPA for those who participated in any weekly MVPA. Overall, 48% of children reported meeting physical activity guidelines for 420 min·wk-1. Overall, children reported 400.36 ± 280.04 min·wk-1 of MVPA. Those with depression had significantly less MVPA than those without (95% confidence interval [CI], -96.65 to -26.31). Girls had significantly less MVPA than boys (95% CI, -59.15 to -40.31). Overweight and obese children reported less MVPA compared with normal weight children (95% CIs, -42.65 to -17.29 and -91.61 to -65.50, respectively). EVS demonstrates strong discriminant validity to detect differences between groups as a function of sex, body mass index, and depression.

Effects of a Specialized Primary Care Facility on Preventive Service Use Among Autistic Adults: a Retrospective Claims Study.

BACKGROUND: While in some studies, the patient-centered medical home has been linked with increased receipt of preventive services among other populations, there is a paucity of literature testing the effectiveness of medical homes in serving the healthcare needs of autistic adults. OBJECTIVE: To compare the receipt of preventive services by patients at a patient-centered medical home specifically designed for autistic adults (called the Center for Autism Services and Transition "CAST") to US national samples of autistic adults with private insurance or Medicare. DESIGN: Retrospective study of medical billing data. SAMPLE: The study sample included CAST patients (N = 490) who were propensity score matched to Medicare-enrolled autistic adults (N = 980) and privately insured autistic adults (N = 980) using demographic characteristics. The median age of subjects was 21 years old, 79% were male, and the median duration of observation was 2.2 years. MAIN MEASURES: The primary outcome measure was the receipt of any preventive service, as defined by the Medicare Learning Network and AAPC (formerly the American Academy of Professional Coders). Secondary outcome measures included receipt of specific preventive service types (i.e., general health and wellness services, screenings, counseling and therapies, vaccinations, and sexual/reproductive health services). KEY RESULTS: CAST patients had significantly greater odds of receiving any preventive service than Medicare-enrolled (OR = 10.3; 95% CI = 7.6-13.9) and privately insured (OR = 3.1; 95% CI = 2.3-4.2) autistic adults. CAST patients were also significantly more likely to receive screenings and vaccinations than either Medicare beneficiaries (screenings OR = 20.3; 95% CI = 14.7-28.0; vaccinations OR = 5.5; 95% CI = 4.3-7.0) or privately insured beneficiaries (screenings OR = 2.0; 95% CI = 1.6-2.5; vaccinations OR = 3.3; 95% CI = 2.6-4.1). CONCLUSIONS: Autistic adults receiving care through CAST were significantly more likely to recieve preventive care services than national samples of autistic adults. Future comparative effectiveness trials are needed to rigorously assess the impact of primary care-based initiatives to improve care for autistic adults.

Validity and reliability of the Cochlear Implant Quality of Life (CIQOL)-35 Profile and CIQOL-10 Global instruments in comparison to legacy instruments.

OBJECTIVE: Validated and reliable patient-reported outcome measures (PROMs) may provide a comprehensive and accurate assessment of the real-world experiences of cochlear implant (CI) users and complement information obtained from speech recognition outcomes. To address this unmet clinical need, the Cochlear Implant Quality of Life (CIQOL)-35 Profile instrument and CIQOL-10 Global measure were developed according to the Patient-Reported Outcomes Information System (PROMIS) and COnsensus-based Standards for the Selection of health status Measurement INstruments (COSMIN) guidelines. The CIQOL-35 Profile consists of 35 items in six domain constructs (communication, emotional, entertainment, environment, listening effort, and social) and the CIQOL-10 Global contains 10 items that provide an overall CIQOL score. The present study compares psychometric properties of the newly developed CIQOL instruments to two legacy PROMs commonly used in adult CI users. DESIGN: Using a prospective cohort design, a sample of 334 adult CI users recruited from across the United States provided responses to (1) the CIQOL instruments; (2) a CI-specific PROM (Nijmegen Cochlear Implant Questionnaire, NCIQ); and (3) a general-health PROM (Health Utilities Index 3 [HUI-3]). Responses were obtained again after 1 mo. The reliability and validity of the CIQOL-35 Profile and CIQOL-10 Global instruments were compared with the legacy PROMs (NCIQ and HUI-3). Psychometric properties and construct validity of each instrument were analyzed using confirmatory factor analysis, item response theory (IRT), and test-retest reliability (using Pearson's correlations), where appropriate. RESULTS: All six CIQOL-35 Profile domains and the CIQOL-10 Global instrument demonstrated adequate to strong construct validity. The majority of the NCIQ subdomains and NCIQ total score had substantial confirmatory factor analysis model misfit, representing poor construct validity. Therefore, IRT analysis could only be applied to the basic sound performance and activity limitation subdomains of the NCIQ. IRT results showed strong psychometric properties for all CIQOL-35 Profile domains, the CIQOL-10 Global instrument, and the basic sound performance and activity limitation subdomains of the NCIQ. Test-retest reliability was strong for the CIQOL-35 Profile, CIQOL-10 Global, and NCIQ, but moderate to weak for the HUI-3; the hearing score of the HUI-3 demonstrated the weakest reliability. CONCLUSION: The CIQOL-35 Profile and CIQOL-10 Global are more psychometrically sound and comprehensive than the NCIQ and the HUI-3 for assessing QOL in adult CI users. Due to poor reliability, we do not recommend using the HUI-3 to measure QOL in this population. With validation and psychometric analyses complete, the CIQOL-35 Profile measure and CIQOL-10 Global instrument are now ready for use in clinical and research settings to measure QOL and real-world functional abilities of adult CI users.

Sex Education Practices for People With Intellectual and Developmental Disabilities: A Qualitative Study.

IMPORTANCE: People with intellectual and developmental disabilities (IDD) express a clear interest in intimate relationships but face many barriers to receiving sex education (SE) that would support their engagement in these relationships. OBJECTIVE: To understand barriers to, the context of, and recommendations for SE for people with IDD. DESIGN: Qualitative study design with interviews and focus groups with four key stakeholder groups. Data were analyzed using a constant comparative approach. PARTICIPANTS: Participants were 8 youths with IDD, 9 parents, 12 health care providers, and 8 educators. RESULTS: Four barriers to SE were identified: (1) values and cultural issues, (2) parental attitudes toward their child's sexuality, (3) a lack of organizational policies and standards, and (4) limited professional education or societal biases. These barriers contribute to a SE context primarily initiated by people with IDD or provided reactively. The participants recommended proactive, formal SE provided by multiple stakeholders throughout adulthood. CONCLUSIONS AND RELEVANCE: Stakeholders should advocate for policies, standards, and additional training for parents, educators, and health care providers to support SE for people with IDD throughout adulthood. What This Article Adds: Barriers to SE contribute to the current context in which SE is shared with people with IDD. Stakeholders can advocate for policies, standards, and training to overcome these barriers and support recommendations for proactive, formal SE provided by multiple stakeholders through adulthood.

Considering Domain-Specific Experiential Learning: Self-Efficacy in Pediatric Physical Therapy Education.

BACKGROUND: Variability exists in pediatric training in physical therapy programs. Little is known about educator implementation of curriculum recommendations. Few options exist for evaluating student outcomes following pediatric instruction. PURPOSE: The purposes of this study are to describe the pediatric curriculum of a physical therapy program, quantify changes in self-efficacy following pediatric instruction, and define relationships between self-efficacy, prior experience, and interest in future pediatric practice. METHODS: A prospective cohort study included 48 students. Measures were pediatric content hours, the Pediatric Communication and Handling Self-Efficacy Scale, prior experience, and self-reported interest in future pediatric practice. RESULTS: Pediatric content hours followed published recommendations. There was a significant increase in self-efficacy after pediatric instruction. Prior experience and interest in future pediatric practice were significantly related to self-efficacy. CONCLUSIONS: Our results indicate that physical therapy programs reaching the recommended content hours for pediatric instruction support growth in student communication and handling self-efficacy.

Evaluation of the Functional Mobility Assessment Through Rasch Analysis.

OBJECTIVE: To determine the effectiveness of the Functional Mobility Assessment (FMA) when measuring an individual's satisfaction with functional mobility. DESIGN: Secondary analysis of cross-sectional self-report data. SETTING: Assistive technology center within an academic medical center in the Midwestern United States. PARTICIPANTS: Individuals with a disability that use or plan to use a mobility device (N=871). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: FMA. RESULTS: All FMA items (10/10) contributed to a single unidimensional construct with good to strong fit to a unidimensional confirmatory factor model. Rasch analysis revealed that the rating scale, majority of persons (>90%), and all items fit the Rasch measurement model. The FMA demonstrated adequate reliability (person reliability=0.85) and separated persons into 3 strata: those with high, medium, and low satisfaction with functional mobility. CONCLUSIONS: The FMA is an appropriate measure for use in research and clinical settings to quantify satisfaction with functional mobility among mobility device users.

Development of the Cochlear Implant Quality of Life Item Bank.

OBJECTIVES: Functional outcomes following cochlear implantation have traditionally been focused on word and sentence recognition, which, although important, do not capture the varied communication and other experiences of adult cochlear implant (CI) users. Although the inadequacies of speech recognition to quantify CI user benefits are widely acknowledged, rarely have adult CI user outcomes been comprehensively assessed beyond these conventional measures. An important limitation in addressing this knowledge gap is that patient-reported outcome measures have not been developed and validated in adult CI patients using rigorous scientific methods. The purpose of the present study is to build on our previous work and create an item bank that can be used to develop new patient-reported outcome measures that assess CI quality of life (QOL) in the adult CI population. DESIGN: An online questionnaire was made available to 500 adult CI users who represented the adult CI population and were recruited through a consortium of 20 CI centers in the United States. The questionnaire included the 101 question CIQOL item pool and additional questions related to demographics, hearing and CI history, and speech recognition scores. In accordance with the Patient-Reported Outcomes Measurement Information System, responses were psychometrically analyzed using confirmatory factor analysis and item response theory. RESULTS: Of the 500 questionnaires sent, 371 (74.2%) subjects completed the questionnaire. Subjects represented the full range of age, durations of CI use, speech recognition abilities, and listening modalities of the adult CI population; subjects were implanted with each of the three CI manufacturers' devices. The initial item pool consisted of the following domain constructs: communication, emotional, entertainment, environment, independence, listening effort, and social. Through psychometric analysis, after removing locally dependent and misfitting items, all of the domains were found to have sound psychometric properties, with the exception of the independence domain. This resulted in a final CIQOL item bank of 81 items in 6 domains with good psychometric properties. CONCLUSIONS: Our findings reveal that hypothesis-driven quantitative analyses result in a psychometrically sound CIQOL item bank, organized into unique domains comprised of independent items which measure the full ability range of the adult CI population. The final item bank will now be used to develop new instruments that evaluate and differentiate adult CIQOL across the patient ability spectrum.

Dose and Duration of Opioid Use in Propensity Score-Matched, Privately Insured Opioid Users With and Without Spinal Cord Injury.

OBJECTIVES: To (1) compare the opioid utilization patterns in opioid users with spinal cord injury (SCI) to a propensity score-matched general population of opioid users without SCI; and (2) identify characteristics of persons with SCI associated with long-term and/or high-dose use of opioids. DESIGN: Quasi-experimental analysis of archival data. SETTING: Data used for the analysis were derived from Thompson Reuters MarketScan Commercial Claims and Encounters Databases for the years 2012 to 2013. PARTICIPANTS: Participants (N=2908; aged 18-64y) included opioid users with SCI (n=1454) and propensity score-matched opioid users without SCI (n=1454). The cohorts were matched using demographics including comorbidities, hospital admissions, age, sex, and geographic region. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Medical and pharmacy claims from 2012 to 2013 MarketScan data were analyzed to characterize whether persons were short-term (<90d) or long-term (≥90d) opioid users, and whether persons had high (≥120mg) or low (<120mg) average daily morphine equivalents. RESULTS: Persons with SCI were significantly more likely to be long-term users of low-dose, short-acting opioids (P<.0001) and more likely to be taking high morphine-equivalent doses of long-acting opioids (P<.0001) than matched controls. Among persons with SCI, those with lumbar/sacral injuries had more days' supply of high-dose, long-acting opioids than did persons with thoracic or cervical injuries. CONCLUSIONS: Persons with SCI are prescribed opioids for longer durations and at higher morphine-equivalent doses than controls, which may increase the risk of opioid dependence or adverse drug events. Findings should be considered in the development of practice guidelines for alternate pain management options or opioid dependence interventions for persons with SCI.

Polypharmacy and adverse drug events among propensity score matched privately insured persons with and without spinal cord injury.

STUDY DESIGN: Retrospective quasi-experimental design. OBJECTIVES: To compare the incidence of adverse drug events (ADEs) between persons with and without spinal cord injury (SCI), while controlling for all potential and available risk factors. SETTING: A commercially available claims dataset consisting of ~170 million patient cases in the United States between 2012 and 2013. METHODS: Participants (aged 18-64 years) included 2779 persons with polypharmacy and traumatic or non-traumatic SCI and 2779 propensity score-matched persons with polypharmacy without SCI. The cohorts were matched using demographic variables including number of concomitant prescriptions, comorbidities, hospital admissions, age, gender, and geographic region. Inpatient and outpatient claims records containing 395 distinct IDC-9 codes indicative of ADEs were extracted. Incidence and frequency of ADEs were compared between groups using logistic and Poisson regression, respectively. RESULTS: Persons with SCI were significantly more likely to experience an ADE than matched controls (Odds Ratio = 1.45, p < 0.0001). Among persons with ADEs (n = 1552), individuals with SCI experienced fewer ADEs over time than matched controls (Incidence Rate Ratio = 0.91, p < 0.0001). CONCLUSIONS: While persons with SCI and polypharmacy are at a greater risk for experiencing an ADE, their medical care after an ADE may be better managed than that of a matched control population. There may be a need for practice guidelines that facilitate proactive identification of persons with SCI at the highest risk of ADE. Steps may then be taken to mitigate risk, in contrast to current practice trends that appear to take a reactive approach after an ADE has occurred.

Thoroughness and Psychometrics of Fidelity Measures in Occupational and Physical Therapy: A Systematic Review.

OBJECTIVE: This study evaluated the thoroughness and psychometric properties of fidelity measures used by or of relevance to occupational or physical therapy. METHOD: A systematic review of the literature was completed. Assessments used to measure occupational or physical therapy intervention fidelity were evaluated for thoroughness, reliability, validity, and clinical utility. RESULTS: Eight fidelity measures met inclusion criteria for this systematic review. Most of the measures had moderate levels of thoroughness in the coverage of key aspects of fidelity, reported adequate to excellent reliability and validity, and were highly variable in clinical utility. CONCLUSION: Additional research is recommended to validate existing occupational or physical therapy fidelity measures and to develop novel measures for other occupational therapy and physical therapy interventions. Clinicians and researchers must place greater emphasis on the development and implementation of fidelity measures to ensure uniformity in intervention delivery and high-quality, evidence-based care.

Measuring the interference of pain on daily life in persons with spinal cord injury: A Rasch-validated subset of items from the Brief Pain Inventory interference scale.

BACKGROUND/AIM: Up to 60% of individuals report chronic pain after traumatic spinal cord injury (SCI). Measurement of the degree to which pain interferes with activities and emotions can provide valuable clinical insights with implications for pain management interventions. One questionnaire that can be used to quantify the impact of pain is the Brief Pain Inventory (BPI) interference scale, a seven-item self-report assessment. Our objective was to examine the Rasch measurement properties of the BPI interference scale for measuring pain interference in persons with SCI. METHODS: A secondary analysis of cross-sectional, population-based, self-report data was conducted. Participants were adults with traumatic SCI with residual effects who were at least one year post-injury and 18 years of age (n = 876). Rasch analysis was used to evaluate the measurement properties of the BPI interference items for persons with SCI. RESULTS: Two BPI interference scale items were excluded from analysis due to high rates of missing data. Of the remaining five items, four items demonstrated acceptable measurement properties in the SCI population. CONCLUSION: Four of the original seven BPI interference items provide acceptable measurements of pain interference in the SCI population.

Effectiveness of Interventions to Improve Social Participation, Play, Leisure, and Restricted and Repetitive Behaviors in People With Autism Spectrum Disorder: A Systematic Review.

People with autism spectrum disorder (ASD) commonly experience difficulties with social participation, play, and leisure along with restricted and repetitive behaviors that can interfere with occupational performance. The objective of this systematic review was to evaluate current evidence for interventions within the occupational therapy scope of practice that address these difficulties. Strong evidence was found that social skills groups, the Picture Exchange Communication System, joint attention interventions, and parent-mediated strategies can improve social participation. The findings were less conclusive for interventions to improve play and leisure performance and to decrease restricted and repetitive behaviors, but several strategies showed promise with moderately strong supporting evidence. Occupational therapists should be guided by evidence when considering interventions to improve social participation, play, leisure, and restricted and repetitive behaviors in people with ASD. Additional research using more robust scientific methods is needed for many of the currently available strategies.

A US national update of health condition prevalence among privately-insured autistic adults.

Aim: Previous research using state or regional samples has shown that autistic adults have a higher prevalence of health conditions in comparison to the general population. Methods: To build upon this important previous research, we conducted a cross-sectional retrospective study of 2019-2020 healthcare claims to determine the prevalence of conditions in a US national sample of privately insured autistic adults (n = 30,258) and an age- and sex-matched population comparison (n = 60,516) group of adults without autism diagnoses. Results: Like previous studies, we found that autistic adults had significantly greater odds of most mental and physical health conditions. However, our prevalence estimates differed from previous studies for several mental and physical health conditions. For example, our sample of autistic adults had higher prevalence of anxiety disorders (55%) and attention deficit hyperactivity disorders (34%), but lower prevalence of asthma (9%) and sleep disorders (3%) than previous studies. Discussion & conclusion: Our use of a large US national sample, more recent healthcare claims data, and different methods for identifying health conditions may have contributed to these differences. Our findings alert healthcare providers and policymakers to the health conditions most common among the growing population of autistic adults. We hope these findings lead to improved screening and management of these conditions, inform initiatives to improve access to healthcare, and guide future funding.

Building Community and Identity Online: A Content Analysis of Highly Viewed #Autism TikTok Videos.

Background: TikTok is a popular social media site for connecting with others online where many users also access and share health-related information. Previous studies have characterized information shared about specific disabilities on TikTok, but descriptions of autism-related content are lacking. Understanding the information shared about autism on TikTok is important to understanding health communication in this space, the lived experiences of autistic people, and the role that social media platforms play in building community through connection, understanding, and inclusion. Methods: We used an open-source data scraper to identify and download videos with at least 1 million views and that used the hashtag #autism from TikTok. Using a joint inductive and deductive approach, we performed a content analysis of videos. We identified six content topics that described video content (e.g., positive social interactions and features of autism), and three categories that described video purpose (e.g., educational, experiential, and observational). We used descriptive statistics to describe characteristics of who was in the TikTok videos. Results: We analyzed n = 678 videos. The most common content topic of TikTok videos was features of autism (39.7%), followed by marginalization (25.4%). Most videos were categorized as experiential (61.4%) or observational (31.4%) rather than educational (7.2%). Approximately 65.5% of videos featured an autistic adult and 22.6% featured an autistic child. Among videos featuring an autistic person (n = 594), most autistic people were perceived to be White (87.0%) with similar numbers of feminine (52.9%) and masculine (44.8%) presenting autistic people. Conclusions: Highly viewed #autism TikTok videos primarily share autistic people's individual experiences rather than providing general education about autism. However, autistic Black, Indigenous, and people of color may have difficulty finding others that represent them along both disability and racial dimensions. Future research should investigate autistic people's motivations for using TikTok, and how #autism content shapes social discourse about autism.

What was the purpose of this study?: We wanted to describe information about autism that is highly viewed on TikTok to better understand what people see, hear, and learn about autism online. Autism content on TikTok can help autistic people find others with similar experiences and build community and can shape the way nonautistic people view and interact with autistic people. What did the researchers do?: We downloaded videos from TikTok that used the hashtag #autism and had at least 1 million views. We watched the videos and assigned each video a content topic and a category. Content topics described the content of the video and categories described the purpose of the video. What were the results of the study?: We included 678 videos grouped into six content topics: (1) features of autism, which included videos about restrictive and repetitive behaviors, social and communication differences, associated core experiences, and talents; (2) marginalization, which included videos about lack of access, stigma and misconceptions, and inspiration porn; (3) supports, which included accommodations, services and interventions, and caregiving; (4) positive social interactions; (5) daily life; and (6) miscellaneous/other.The most common content topic was features of autism (39.7%), followed by marginalization (25.4%). The least common content topic was positive social interactions (5.2%). The most common category of videos was experiential (61.4%), followed by observational (31.4%) and educational (7.2%). More than half of the videos included an autistic adult, and about a quarter included an autistic child. Among the videos that included an autistic person, most autistic people were perceived to be White, and there were similar numbers of masculine and feminine-presenting autistic people. What do these findings add to what was already known?: We know that many autistic people like to communicate online and use social media. These findings show that most of the content about autism on TikTok involves autistic people sharing their life experiences instead of providing "facts" or education about autism. Because autistic people from diverse backgrounds were less often present in videos, these individuals may have difficulty connecting with each other on TikTok. What are potential weaknesses in this study?: We did not download TikTok videos while logged into a user account, so the videos we included may be different than the videos shown to an individual user who searches #autism. The way that we categorized videos may have been different from how others would have done so. We did not include less-viewed videos in the study, which could have had different content topics. Our perceptions of the gender, race, and ethnicity of people in videos may not reflect how they would self-identify. How will these findings help autistic adults now or in the future?: These findings may be helpful for autistic adults who are looking for online community building with other autistic people. Because many autistic people shared their lived experiences, these findings may promote understanding and acceptance of autistic people by nonautistic people.

Brief Report: The Impact of Social and News Media Coverage on the Dissemination of Autism Research.

We examined how sharing autism research articles via social and news media was associated with citations and downloads. We included articles published in 2019 from three autism-focused journals. Every 10 Twitter shares yielded a 4.4% increase in article downloads and 5.2% increase in citations. Articles with at least one Facebook post had 23.3% more downloads than those without. Articles with at least one news story had 56.9% more downloads and 39.3% more citations than those without. Descriptive analysis indicated the most shared, downloaded, and cited articles focused largely on treatments or interventions. Autism researchers should continue sharing articles via Twitter and news media because it increases the reach of their work and may better engage research and autism community members.