Short report: Perceptions of causes and common beliefs of autism spectrum disorder in the U.S

2020 ◽  
Vol 70 ◽  
pp. 101472 ◽  
Author(s):  
Anabel Castillo ◽  
Shana R. Cohen ◽  
Jessica Miguel ◽  
Melissa F Warstadt
Keyword(s):  
Autism Spectrum Disorder ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Short Report ◽  
The U.S

A cross-sectional descriptive analysis of portrayal of autism spectrum disorders in YouTube videos: A short report

Autism ◽  
2019 ◽  
Vol 24 (1) ◽  
pp. 263-268 ◽  
Author(s):  
Monica L Bellon-Harn ◽  
Vinaya Manchaiah ◽  
Lekeitha R Morris
Keyword(s):  
Autism Spectrum Disorder ◽  
Assessment Tool ◽  
Descriptive Analysis ◽  
Signs And Symptoms ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Short Report ◽  
Cross Sectional ◽  
Related Information ◽  
Youtube Videos

Professionals have expressed concerns about the quality of autism-related information available from Internet-based sources. The purpose of this study was to examine the source, content, usability, and actionability of autism spectrum disorder–related information contained in 100 different videos directed to families of children with autism spectrum disorder uploaded to YouTube. Upload sources were identified, and video content was coded. Understandability and actionability of the videos were examined using Patient Education Materials Assessment Tool for Audiovisual Materials. The collective number of views of the videos was almost 100 million. The length of videos was 691.17 min (i.e. 11.5 h) with the shortest video being 30 s and the longest video being 37.36 min. The YouTube videos related to autism spectrum disorder covered a range of issues, although much of the content was focused on signs and symptoms. No difference in content reporting was noted based on sources for most categories, although differences were noted in some categories (e.g. professionals mentioned diagnosis and resources more frequently). Poor understandability and actionability scores (i.e. below 70%) were reported for all videos regardless of video source. However, the videos generated by the professionals were superior in terms of understandability. Study implications and recommendations for further research are discussed.

Pragmatic adaptations of telehealth-delivered caregiver coaching for children with autism in the context of COVID-19: Perspectives from the United States and South Africa

Autism ◽  
2021 ◽  
pp. 136236132110225
Author(s):  
Lauren Franz ◽  
Jill Howard ◽  
Marisa Viljoen ◽  
Linmarie Sikich ◽  
Tara Chandrasekhar ◽  
...  
Keyword(s):  
United States ◽  
South Africa ◽  
Autism Spectrum Disorder ◽  
Clinical Trials ◽  
The United States ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Local Context ◽  
Short Report ◽  
The World

When COVID-19 disrupted autism spectrum disorder research globally, many clinical trials of behavioral interventions pivoted to telehealth. Telehealth has the potential to increase geographic reach and improve racial/ethnic diversity in research. This matters because most autism spectrum disorder intervention studies have primarily included White, upper-middle-income families from North America and Europe. Participant homogeneity limits our ability to identify what types of intervention works in which context for which populations. Importantly, telehealth needs to “fit” the local context, and in particular, include strategies that factor in the “digital divide.” This short report details contextual considerations and pre-implementation pragmatic adaptations in two autism spectrum disorder clinical trials that include Early Start Denver Model–informed caregiver coaching in the United States and South Africa. By comparing and contrasting how implementation context informed the telehealth pivot in these two clinical trials in different hemispheres, we highlight equity considerations for adaption. The pandemic is an opportunity to understand how remote intervention can “fit” diverse contexts, while providing valid scientific results. It is however important that adaptations be documented and feasibility of the adapted approach be tracked. COVID-19-related telehealth adaptations of behavioral interventions could facilitate the development of new strategies with wider global impact. Lay abstract COVID-19 caused many autism spectrum disorder caregiver-coaching studies to move to telehealth. Telehealth can increase the diversity of people who take part in research. This matters because most autism spectrum disorder studies have included people who have resources, are White, and live in North America and Europe. When study participants are similar, it is hard to understand which interventions can help different types of people who live in different parts of the world. While telehealth may allow more people to take part in research, it needs to “fit” the local context and consider the “digital divide” because many people around the world have no access to computers and the Internet. This short report describes changes to two research studies that include caregiver coaching based on the Early Start Denver Model in the United States and South Africa. We describe how the local context, including technology and Internet access, guided the telehealth approach. By doing so, we highlight ways to make telehealth available to more people around the world. The pandemic can help us understand how telehealth can “fit” diverse places and support high-quality research. It is important that study changes are tracked and we assess how well the changes work. COVID-19 telehealth changes to caregiver coaching can result in new ways to reach more people around the world.

scholarly journals Short report: Improving record–review surveillance of young children with an autism spectrum disorder

Autism ◽  
2012 ◽  
Vol 17 (5) ◽  
pp. 623-629 ◽  
Author(s):  
Lisa D Wiggins ◽  
Diana L Robins ◽  
Marshalyn Yeargin-Allsopp
Keyword(s):  
Autism Spectrum Disorder ◽  
Young Children ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Short Report ◽  
Record Review

Public knowledge and stigma of autism spectrum disorder: Comparing China with the United States

Autism ◽  
2020 ◽  
Vol 24 (6) ◽  
pp. 1531-1545 ◽  
Author(s):  
Luodi Yu ◽  
Sheri Stronach ◽  
Ashley J Harrison
Keyword(s):  
United States ◽  
Autism Spectrum Disorder ◽  
Public Awareness ◽  
The United States ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Autistic People ◽  
Key Factor ◽  
Public Views ◽  
The U.S

Autism spectrum disorder in China differs considerably from autism spectrum disorder in the West in terms of prevalence estimates, education opportunities, and life outcomes of autistic people. The lack of autism spectrum disorder awareness could be a key factor underlying the disparities. To date, there has been no evaluation of autism spectrum disorder knowledge among the general public of China. Using the Autism Stigma and Knowledge Questionnaire developed for use in diverse cultural contexts, this study uncovered profoundly different public views about autism spectrum disorder in China compared with the United States. Determined by cognitive diagnosis modeling, 86%–91% of the surveyed U.S. citizens ( N = 1127) achieved adequate autism spectrum disorder knowledge in diagnosis/symptoms, etiology, and treatment, whereas for the Chinese citizens ( N = 1254) the percentages were only 57%–65%. Moreover, 14% of the participants from the United States were classified to endorse autism spectrum disorder stigma; in comparison, 38% of the Chinese participants endorsed autism spectrum disorder stigma. The Chinese citizens displayed knowledge deficits primarily in the areas of autism spectrum disorder core symptoms, comorbid intellectual impairment, and prognosis. Sociodemographic factors associated with the Chinese citizen’s misconceptions included gender, ethnicity, social economic factors, among others. These results have important implications for increasing public awareness and promoting community participation for autistic individuals in China. Lay abstract ASD in China differs considerably from ASD in the West in terms of prevalence estimates, education opportunities and life outcomes of autistic people. The lack of ASD awareness could be a key factor underlying these disparities. We asked 1127 U.S. citizens and 1254 Chinese citizens about their autism knowledge using the Autism Stigma and Knowledge Questionnaire (ASK-Q).The results indicated profoundly different public views about ASD in China compared to the U.S. Specifically, only 57%-65% of the Chinese citizens demonstrated adequate ASD knowledge compared to 86%-91% in the U.S. citizens. Fourteen percent of the U.S. citizens were shown to hold stigma beliefs towards ASD; in comparison, 38% of the Chinese citizens indicated ASD stigma. The Chinese citizens displayed misconceptions about ASD related to symptoms, causes, and possible long-term outcomes. In China but not in the U.S., male citizens and citizens with lower social economic status were more likely to have misconceptions about ASD than others were. The findings of this research can help increase public awareness about ASD and create a more inclusive environment for autistic people in China.

County-level variation in geographic access to Board Certified Behavior Analysts among children with Autism Spectrum Disorder in the United States

Autism ◽  
2021 ◽  
pp. 136236132110020
Author(s):  
Marissa E Yingling ◽  
Matthew H Ruther ◽  
Erick M Dubuque ◽  
David S Mandell
Keyword(s):  
Autism Spectrum Disorder ◽  
School Districts ◽  
Civil Rights ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Behavior Analyst ◽  
Spectrum Disorder ◽  
Geographic Access ◽  
Behavior Analysts ◽  
The U.S

This study examined variation in geographic access to Board Certified Behavior Analysts for children with autism spectrum disorder. Between March and May 2019, we integrated public data from the U.S. Department of Education’s Civil Rights Data Collection, Behavior Analyst Certification Board’s certificant registry, and U.S. Census. The study sample included all U.S. counties and county equivalents in 48 states and D.C. ( N = 3108). Using geographic information systems software, we assigned Board Certified Behavior Analysts to counties based on their residence, allocated children via school districts to counties, and generated per capita autism spectrum disorder/Board Certified Behavior Analyst ratios. We calculated the Getis-Ord G* statistics for each county and each ratio and compared counties in high-ratio clusters with counties in low-ratio clusters by socioeconomic variables. More than half of all counties had no Board Certified Behavior Analysts. Counties in the highest accessibility category had ⩽17.1 children with autism spectrum disorder per Board Certified Behavior Analyst ( n = 770), while counties in the lowest accessibility category had ⩾137.1 children with autism spectrum disorder per Board Certified Behavior Analyst ( n = 12). In all, 55 of the 129 counties with the highest autism spectrum disorder prevalence had no Board Certified Behavior Analysts. Higher accessibility counties were wealthier and had smaller uninsured populations. To improve geographic access, we must identify factors driving unequal distribution that can inform provider recruitment and retention efforts in underserved areas. Lay abstract This study looked at whether access to Board Certified Behavior Analysts for children with autism spectrum disorder is different between U.S. counties. The study included all U.S. counties and county equivalents in 48 states and D.C. ( N = 3108). Between March and May 2019, we combined data from the U.S. Department of Education’s Civil Rights Data Collection, Behavior Analyst Certification Board’s certificant registry, and U.S. Census. We assigned Board Certified Behavior Analysts to counties based on their address, matched children in school districts to counties, and determined how many children with autism spectrum disorder there were in a county compared with how many Board Certified Behavior Analysts there were in a county. The results show uneven numbers of Board Certified Behavior Analysts between U.S. counties. More than half of all counties had no Board Certified Behavior Analysts. National maps illustrate clusters of high and low accessibility to Board Certified Behavior Analysts. To improve access to Board Certified Behavior Analysts in underserved areas, we must identify what contributes to the differences in access.

Short report: Evaluating the safety and usability of head-mounted virtual reality compared to monitor-displayed video for children with autism spectrum disorder

Autism ◽  
2020 ◽  
Vol 24 (7) ◽  
pp. 1924-1929 ◽  
Author(s):  
Mahan Malihi ◽  
Jenny Nguyen ◽  
Robyn E Cardy ◽  
Salina Eldon ◽  
Catharine Petta ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Virtual Reality ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Short Report ◽  
Negative Effects ◽  
Convenience Sample ◽  
Head Mounted Display ◽  
The Impact

Virtual reality provides a relatively inexpensive way to learn and repeatedly practice skills in personalized, controlled, and safe computer-generated settings. These systems are increasingly receiving attention as an innovative medium for delivering interventions to children with autism spectrum disorder. Although many virtual reality systems are commercially available and their use is increasing, little is known about the safety and usability of these systems for children with autism spectrum disorder. The aim of this study was a first step in addressing this gap. A convenience sample of 35 children with a diagnosis of autism spectrum disorder participated in an immersive head-mounted display virtual reality experience and a control condition (monitor-displayed video). Levels of anxiety and negative effects experienced were not significantly different between the two conditions. Participants reported significantly enhanced spatial presence (p = 0.003; d = 0.3) and naturalness (p = 0.002; d = 0.47) for the head-mounted display–virtual reality condition, and 74% of participants preferred using head-mounted display–virtual reality over monitor-displayed video. These findings provide preliminary evidence to support the safety and usability of head-mounted display–virtual reality for children with autism spectrum disorder. Future studies are needed to replicate the results in a larger sample, a range of virtual reality experiences, and in the context of long-term exposure. Lay abstract This study investigated the safety and usability of a virtual reality experience for children with autism spectrum disorder in a laboratory setting. In our study, the negative effects of head-mounted display–virtual reality were similar to monitor-displayed video watching. At the same time, the participants indicated that the head-mounted display–virtual reality experience provided improved realism and sense of presence. This study is a first step in understanding the impact of head-mounted display on children with autism spectrum disorder.

Short report: Development and utility of the Family-Centered Autism Navigation interview

Autism ◽  
2020 ◽  
pp. 136236132097289
Author(s):  
Kris Pizur-Barnekow ◽  
Amy C Lang ◽  
Brian Barger
Keyword(s):  
Autism Spectrum Disorder ◽  
Systems Of Care ◽  
Children With Autism ◽  
Structured Interview ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Short Report ◽  
The Family ◽  
Interview Guide ◽  
Family Centered

Navigating various systems, resources, and supports available for families of children with autism spectrum disorder is challenging. Family navigation is a potentially important support system for families of children with autism spectrum disorder. Family navigators are professionals who engage with families to enhance access to early identification and intervention services via shared navigation plans that help meet the family’s priorities and goals when navigating systems of support. Systematic processes and tools facilitating the development of a shared navigation plan with families following diagnosis are currently limited. This short report describes product development of the Family-Centered Autism Navigation using quality improvement methods including Lean Launch and qualitative methodology. Lay abstract When a parent learns of their child’s autism diagnosis, they may be overwhelmed, confused, and frustrated. Family navigation services are designed to improve access to care. While these services are a promising intervention to enhance well-being and developmental outcomes, there are limited tools that can systematically facilitate the development of a shared navigation plan that prioritizes the concerns of the family. The Family-Centered Autism Navigation semi-structured interview guide is designed for family navigators to triage and prioritize caregiver’s needs to coordinate and navigate systems of care after learning of their child’s autism spectrum disorder diagnosis. The goals of the Family-Centered Autism Navigation interview are to (1) identify family and child strengths; (2) identify family/caregiver concerns regarding navigation of services and systems following their child’s diagnosis of autism; (3) measure change in caregiver knowledge, ability and skill as it relates to understanding, remembering, and evaluating information they receive; and (4) assist with the development of a shared navigation plan. When using the Family-Centered Autism Navigation guide, family navigators and caregivers co-create a family-centered, prioritized action plan that supports and prepares caregivers as they navigate systems of care. This short report describes the development process of the Family-Centered Autism Navigation semi-structured interview guide. We utilized brief interviews ( n = 42), expert feedback ( n = 13), and quality improvement strategies ( n = 2 family navigators) to develop the questions and determine the usability of the Family-Centered Autism Navigation interview in practice.

scholarly journals Short report on research trends during the COVID-19 pandemic and use of telehealth interventions and remote brain research in children with autism spectrum disorder

Autism ◽  
2021 ◽  
pp. 136236132110047
Author(s):  
Wan-Chun Su ◽  
Sudha Srinivasan ◽  
Corina Cleffi ◽  
Anjana Bhat
Keyword(s):  
Public Health ◽  
Autism Spectrum Disorder ◽  
Brain Research ◽  
Low Cost ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Short Report ◽  
Online Data ◽  
Neuroimaging Data

Following the outbreak of the COVID-19 pandemic, the delivery of face-to-face (F2F) therapeutic interventions and neuroimaging assessments for children with autism spectrum disorder has been disrupted. To resume interventions and assessments, many services are now using telehealth-based online platforms. Using the Zoom conferencing platform, our research group has been providing creative play-based interventions to school-age children with autism spectrum disorder. The feedback on this telehealth intervention experience has been generally positive (mean satisfaction score: 4.4 on a 5-point Likert-type scoring range) and our preliminary data from six children with autism spectrum disorder suggest training-related improvements in gross motor, balance, and imitation skills. Despite the positive results, it remains to be explored if the effects of telehealth interventions are similar to those of F2F interventions. Neuroimaging techniques could provide objective measures of intervention effects. However, this will require researchers to resume neuroimaging research while adopting safe public health protocols to control the risk of COVID-19 transmission. In this short report, we summarize existing safety protocols for F2F neuroimaging research, our own experiences of safely conducting alternative, on-site and off-site neuroimaging data collection, as well as the potential opportunities of using online data sharing and low-cost, remote neuroimaging/electrophysiological techniques to continue brain research during the pandemic. Lay abstract The COVID-19 pandemic has caused disruption in F2F healthcare delivery and neuroimaging research, especially when involving vulnerable populations such as children with autism spectrum disorder. Given the easy access to multiple video conferencing platforms, many healthcare services have moved to an online delivery format (i.e. telehealth). It is important to monitor the behavioral and neural effects of telehealth interventions and resume neuroimaging research while adopting public health safety protocols to control the risk of COVID-19 transmission. We summarize existing safety protocols and our own experience from in-person functional near-infrared spectroscopy neuroimaging data collection (on-site, at home, and in outdoor settings), as well as potential opportunities of using online data sharing and low-cost, remote neuroimaging/electrophysiological techniques to continue brain research during the pandemic.

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