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.

Diabetes mellitus in privately insured autistic adults in the United States.

LAY ABSTRACT: Diabetes is a chronic health condition that is challenging to manage. Estimates of how common diabetes is among non-autistic adults are available, but improved estimates for autistic adults are needed. The purpose of this study was to obtain improved diabetes estimates for autistic adults. We analyzed a large private health insurance claims database to estimate how common diabetes was among autistic adults, and how likely autistic adults were to have diabetes compared to non-autistic adults at 5-year age intervals throughout adulthood (e.g. 18-22, 23-27). We found that diabetes was more common among autistic adults than non-autistic adults and that autistic adults were significantly more likely than non-autistic adults to have diabetes throughout most of adulthood. Our findings suggest that autistic adults may be more likely than non-autistic adults to experience diabetes in adulthood. The development of diabetes support services and programs that accommodate autistic adults' individual needs are important for future study to promote positive diabetes outcomes for autistic adults.

Comparing Kidney Transplant Rates and Outcomes Among Adults With and Without Intellectual and Developmental Disabilities.

Importance: Improving equity in organ transplant access for people with intellectual and developmental disabilities (IDD) is a topic of social discourse in mainstream media, state legislation, and national legislation. However, few studies have compared evaluation rates, transplant rates, and outcomes among adults with and without IDD. Objective: To compare rates of kidney transplant and transplant-specific outcomes between propensity-score matched groups of adults with end-stage kidney disease (ESKD [also referred to as end-stage renal disease (ESRD)]) with and without co-occurring IDD. Design, Setting, and Participants: This retrospective cohort study included all Medicare inpatient and outpatient standard analytical files from 2013 through 2020. A total of 1 413 655 adult Medicare beneficiaries with ESKD were identified. Propensity-score matching was used to balance cohorts based on age, sex, race, follow-up duration, and Charlson Comorbidity Index. The matched cohorts consisted of 21 384 adults with ESKD (10 692 of whom had IDD) and 1258 kidney transplant recipients (629 of whom had IDD). Data were analyzed between June 1, 2022, and August 1, 2022. Exposure: IDD. Main Outcomes and Measures: Evaluation for kidney transplant, receipt of kidney transplant, perioperative complications, readmission, mortality, graft rejection, and graft failure. Results: Of the 21 384 propensity-score matched adults with ESKD, the median (IQR) age was 55 (43-65) years, 39.2% were male, 27.4% were Black, 64.1% were White, and 8.5% identified as another race or ethnicity. After propensity score matching within the ESKD cohort, 633 patients with IDD (5.9%) received a kidney transplant compared with 1367 of adults without IDD (12.8%). Adults with IDD were 54% less likely than matched peers without IDD to be evaluated for transplant (odds ratio, 0.46; 95% CI, 0.43-0.50) and 62% less likely to receive a kidney transplant (odds ratio, 0.38; 95% CI, 0.34-0.42). Among matched cohorts of kidney transplant recipients, rates of perioperative complications, readmission, and graft failure were similar for adults with and without IDD. Conclusions and Relevance: Using the largest cohort of adult kidney transplant recipients with IDD to date, the study team found that rates of evaluation and transplant were lower despite yielding equivalent outcomes. These data support consideration of adults with IDD for kidney transplant and underscore the urgent need for antidiscrimination initiatives to promote the receipt of equitable care for this population.

"Giving the patients less work": A thematic analysis of telehealth use and recommendations to improve usability for autistic adults.

LAY ABSTRACT: Real-time telehealth visits, called "virtual visits," are live video chats between patients and healthcare professionals. There are lots of steps involved in setting up a virtual visit, which may be difficult for some autistic adults. We interviewed 7 autistic adults, 12 family members of autistic adults, and 6 clinic staff from one clinic in the United States. Our goal was to understand their experiences with virtual visits and see how we can make virtual visits easier to use. We re-read text from the interviews to organize experiences and advice that was shared into topics. We found that autistic adults (or their family members) had to connect with clinic staff many times by phone or online over several days to set up a virtual visit. Participants said that having more experience with technology and using the online patient portal made virtual visits easier to use. But, having issues with technology before the visit could make autistic adults and family members anxious. Clinic staff said it was hard for them to meet the needs of people who were using virtual visits and those who were being seen in person at the clinic. Participants recommended reducing the number of calls between staff and autistic adults or family members using the online patient portal instead. Participants also recommended reminder messages, instruction videos, and approximate wait-times to help autistic adults and family members know what to expect for the virtual visit. Our results are based on peoples' experiences at one clinic, but could help other clinics make virtual visits easier to use for autistic adults and their family members.

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.

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.

"It was surprisingly equivalent to the appointment I had in person": Advantages and disadvantages of synchronous telehealth for delivering primary care for autistic adults.

LAY ABSTRACT: Autistic adults face many barriers to receiving quality primary health care like clinics that are far away and sensory sensitivities. Real-time telehealth visits, called "virtual visits," are live video chats between the patient and provider. Virtual visits may minimize barriers to care for autistic adults. We wanted to describe advantages and disadvantages of using virtual visits for delivering primary health care for autistic adults. We interviewed 7 autistic adults and 12 caregivers of autistic adults who receive primary care through one clinic. Autistic adults and caregivers said advantages to virtual visits were that (1) patients were more comfortable at home, (2) patients could get health care while avoiding physical contact with other people during the pandemic, and (3) virtual visits were similar to or better than in-person visits. The disadvantages included that (1) there could be technology problems like grainy video, (2) the doctor could not physically examine the patient (e.g. look in ears), and (3) patients sometimes participated less in the virtual visit than they would in person. Virtual visits may be beneficial for autistic adults by eliminating travel to the clinic and avoiding stressful sensory stimuli. We recognize that virtual visits may not work for all patients or in all situations. However, our study shows that primary care virtual visits may be beneficial for autistic adults during and beyond the pandemic.

The Association Between Obesity and Key Health or Psychosocial Outcomes Among Autistic Adults: A Systematic Review.

Obesity is linked with health and psychosocial outcomes among many populations. However, it is unclear the extent to which obesity is linked with these outcomes among autistic adults. We searched seven research databases for articles examining the association between obesity and autistic adults' health and psychosocial outcomes. Three studies found that obesity was associated with health outcomes, including: in-hospital mortality, risk of type II diabetes, cardiovascular disease, and number of co-occurring medical conditions. One study found no significant association between autism diagnosis, mental health conditions, and body mass index. Obesity increases the risk of in-hospital mortality and some chronic conditions among autistic adults, highlighting the need for clinicians trained to promote weight management among autistic adults.

Healthcare service use patterns among autistic adults: A systematic review with narrative synthesis.

LAY ABSTRACT: Autistic adults often have complex healthcare needs due to factors like having other health conditions, sensory sensitivities, and limited access to healthcare providers who are trained to provide care for them. All these factors may influence the healthcare services that autistic adults use. In this review, we searched six electronic research databases to gather the most recent evidence about how often autistic adults use five important healthcare services (the emergency department, hospitalization, outpatient mental health, preventive services, and primary care) compared to populations of non-autistic adults. A total of 16 articles were ultimately included in this review. Most articles found that autistic adults had equal or higher use of healthcare services than non-autistic adults. Autistic adults frequently used the emergency department and hospital. This may indicate that routine outpatient care in the community is not meeting their needs. Our findings show the importance of improving care at this level for autistic adults to reduce overuse of the emergency department (in this article referred to as ED) and hospital.

Short report: Patterns of US federal autism research funding during 2017-2019.

LAY ABSTRACT: In 2017, an advisory board consisting of autism researchers and community members recommended that funders of autism research prioritize research projects on: (1) treatments/interventions, (2) evidence-based services, and (3) lifespan issues. To describe funding in these areas since this recommendation was made, we searched the databases of the three largest federal funders of autism research in the United States. We found that the largest portion of federal funding during 2017-2019 was awarded to research on the biology of autism (32.59%) and treatments and interventions for autism (22.87%). Less funds were awarded to research areas that are high funding priorities by the Interagency Autism Coordinating Committee budget recommendation including services (5.02%) and lifespan issues (2.51%). Our findings emphasize that autism research funding is not consistent with the Interagency Autism Coordinating Committee budget recommendation to increase funding particularly to services and lifespan issues. We recommend that funding patterns should shift to better align with these priorities so that autism research may better serve the needs of the autism community.

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.

Health status of Medicare-enrolled autistic older adults with and without co-occurring intellectual disability: An analysis of inpatient and institutional outpatient medical claims.

LAY ABSTRACT: Little is known about the extent to which the healthcare needs of autistic older adults with intellectual disability differ from autistic older adults without intellectual disability. Our study is the first, to our knowledge, to use US national data to compare physical and mental health conditions among autistic older adults with and without intellectual disability. The data analyzed in this study consisted of records from inpatient hospitalizations as well as "institutional outpatient" healthcare visits, which include visits to hospital outpatient departments, rural health clinics, renal dialysis facilities, outpatient rehabilitation facilities, Federally Qualified Health Centers, and community mental health centers. Autistic older adults with intellectual disability were significantly more likely to have thyroid disorders, epilepsy, respiratory infections, gastrointestinal conditions, osteoporosis, cognitive disorders, and schizophrenia/psychotic disorders. In contrast, autistic older adults without intellectual disability were significantly more likely to have obesity, diabetes, high blood pressure, cerebrovascular disease, chronic obstructive pulmonary disease, arthritis, back conditions, attention deficit disorders, substance use disorders, and suicidal ideation or intentional self-injury. These findings highlight the importance of developing distinct, tailored health management strategies for the autistic older adults with and without intellectual disability.

"They looked at me as a person, not just a diagnosis": A qualitative study of patient and parent satisfaction with a specialized primary care clinic for autistic adults.

BACKGROUND: Autistic adults have complex physical and mental healthcare needs that necessitate specialized approaches to healthcare. One promising approach is to embed providers with specialized training or specialty clinics for autistic adults within general primary care facilities. We previously found that autistic adults who received their healthcare through one specialty clinic designed with and for autistic adults had better continuity of care and more preventive service utilization than national samples of autistic adults. OBJECTIVE: To characterize factors that increased or decreased satisfaction with healthcare received through a specialty clinic for autistic adults. METHODS: We conducted 30-60-minute semi-structured interviews with autistic adults (N=9) and parents of autistic adults (N=12). We conducted an inductive thematic analysis, using a phenomenological approach. RESULTS: Factors that increased participants' satisfaction included: (1) receiving personalized care from the provider; (2) spending quality time with the provider; and (3) having strong, positive patient-provider relationships. Factors that decreased participants' satisfaction included: (1) lack of access to services due to scarcity of trained providers; (2) difficulty at times communicating with the provider; and (3) system-level barriers such as policies, practices, or procedures. CONCLUSION: Our findings highlight the importance of providers using personalized approaches to care that meet patients' sensory and communication needs and spending quality time with patients to establish strong, positive patient-provider relationships. Our findings also underscore the critical scarcity of healthcare providers who are trained to deliver care for the growing population of autistic adults.

Patient and caregiver experiences at a specialized primary care center for autistic adults.

Background: Little is known about the extent to which patient-centered medical homes meet the needs of autistic adults. Materials & methods: We conducted a cross-sectional survey of autistic adult patients (n = 47) and caregivers of autistic adult patients (n = 66) receiving care through one patient-centered medical home specifically designed to meet the needs of this population. We performed post hoc comparisons of our results to previously published data from a national sample of autistic adults. Results: Participants reported high levels of satisfaction with care, frequent preventive healthcare use and few unmet healthcare needs. Autistic adults in our sample reported significantly higher satisfaction and fewer unmet healthcare needs. Conclusion: A patient-centered medical home tailored to the needs of autistic adults is a promising approach to healthcare delivery for meeting this population's needs.

Application of semiochemicals to assess the biodiversity of subcortical insects following an ecosystem disturbance in a sub-boreal forest.

From 2000 through 2003 we used semiochemical-baited traps in northeastern Minnesota, USA, to assess changes in assemblages of subcortical forest insects after a catastrophic wind storm in 1999 and subsequent (1999-2000) fuel-reduction activities (salvage-logging and prescribed-burning). We determined the regional efficacy of fifteen semiochemical blends (pheromones and kairomones) as attractants for target and non-target subcortical insect species (Coleoptera: Anthribidae, Buprestidae, Cerambycidae, Cleridae, Cucujidae, Curculionidae, Histeridae, Nemonychidae, Salpingidae, Scolytidae, Tenebrionidae, and Hymenoptera: Siricidae). During the four summers, we trapped 86,471 subcortical insects (143 species) in baited and unbaited Lindgren funnel traps, and 500 beetles (44 species) in baited and unbaited pitfall traps. We report 23 new state collection records of subcortical insects from Minnesota. Trap catches of subcortical insects were greatest in the wind-disturbed areas 2 years after the event, and declined thereafter. Similar trends were observed for subcortical insects in the burned areas. Both wind-disturbance and burning increased the subcortical insect species richness and diversity on the landscape. The subcortical insect species compositions of the salvaged and burned forest areas differed from those of the undisturbed and wind-disturbed areas. Trap catches of subcortical insects in response to semiochemical treatments also varied with year of sampling and land-area treatment. The greatest diversity of subcortical beetle species was in traps baited with attractants for the scolytids, Dendroctonus valens [(+)-α-pinene and (−)-ß-pinene] and Dryocoetes spp. [exo-brevicomin and (−)-α-pinene], perhaps reflecting the generic nature of the baits. The most distinct species compositions were collected in response to the woodborer and Dendroctonus simplex baits, whereas the species compositions in traps with the D. valens and Dryocoetes spp. baits, and the unbaited funnel trap were the most similar. The variation in trap catch with time and across landscapes suggests that the responses of subcortical insects to semiochemicals are more complex than previously appreciated.

Hybrid poplar and forest soil response to municipal and industrial by-products: a greenhouse study.

Little research has been conducted in the Lake States (Minnesota, Wisconsin, and Michigan) to evaluate the effects of municipal and industrial by-product applications on the early growth of short rotation woody crops such as hybrid poplar. Anticipated shortages of harvestable-age aspen in the next decade can be alleviated and rural development can be enhanced through the application of by-products to forest soils. This study was conducted to evaluate the effects of inorganic fertilizer, boiler ash, biosolids, and the co-application of ash and biosolids application on tree growth and soil properties by measuring hybrid poplar clone NM-6 (Populus nigra L. x P. maximowiczii A. Henry) yield, nutrient uptake, and select post-harvest soil properties after 15 wk of greenhouse growth. Treatments included a control of no amendment; agricultural lime; inorganic N, P, and K; three types of boiler ash; biosolids application rates equivalent to 70, 140, 210, and 280 kg available N ha(-1); and boiler ash co-applied with biosolids. All of the by-products treatments showed biomass production that was equal to or greater than inorganic fertilizer and lime treatments. A trend of increased biomass with increasing rates of biosolids was observed. Soil P concentration increased with increasing rates of biosolids application. None of the by-products treatments resulted in plant tissue metal concentrations greater than metal concentrations of plant tissue amended with inorganic amendments. Biosolids, boiler ash, and the co-application of biosolids and boiler ash together on forest soils were as beneficial to plant growth as inorganic fertilizers.