Autism Care Research Articles

24 Community provider perspectives on an autism learning health network: A qualitative study

Abstract Background Although autism is highly prevalent, no single care centre has a sufficient number of patients to produce generalizable knowledge; this slows the pace of quality improvement research. Learning health networks (LHNs) offer a promising solution to improve the quality and efficiency of healthcare by integrating clinical and research data. The Autism Care Network (ACNet) is an LHN composed of 20 clinics across the United States and Canada dedicated to developing the most effective approach to care for children with autism. In Canada, the majority of autistic patients receive a majority of their ongoing care in the community. Therefore, to make meaningful improvements in the continuum of care for patients and their families, it is essential that the ACNet be extended to include community physicians. Objectives The primary objectives were to (1) understand the current data collection practices, learning needs, clinic capacity, areas of improvement, and overall interest of community physicians in participating in a LHN and (2) identify community physicians’ perspectives on the benefits and disadvantages of participating in a LHN and ways in which their engagement in a LHN can be supported. Design/Methods In-depth semi-structured interviews were conducted participants who were purposively sampled from community providers who had previously participated in autism-focused educational programming. The interview guide was developed by the three ACNet sites based on experience with LHNs and working with community physicians. Data were analyzed using an interpretative phenomenological analysis approach with a social constructivist paradigm. Results Analysis of 29 interviews identified 5 primary themes: (1) “Navigating Administrative Challenges,” which highlighted the lack of time, resources, and administrative capacity in the community; (2) “Improving Data Collection Practices”, which emphasized the barriers to consistently collecting information from patients and families; (3) “Increasing Provider Confidence and Competence,” which explored the challenges of navigating the everchanging landscape of community autism care; (4) “Breaking Down Silos”, which focused on fragmented care and the lack of communication between allied health resources, diagnostic hubs, and community physicians; and (5) “Systemic and Societal Barriers to Achieving Best Practices,” which explored the systemic barriers that impact autism care for physicians and families. Conclusion This study provides an understanding of the experiences of community physicians regarding the challenges of community-based autism care. LHNs have the potential to address several of the issues highlighted by community physicians in autism care. Additionally, LHNs can play an important role in improving community care in fields beyond autism.

Community Provider Perspectives on an Autism Learning Health Network: A Qualitative Study.

Although autism is highly prevalent, no single care center has enough patients to produce generalizable knowledge of optimal care; this slows the pace of quality improvement research. The Autism Care Network (ACNet) is a learning health network (LHN) dedicated to developing the most effective approach to care for autistic children and adolescents through integrating clinical and research data. Given that most autistic patients receive care in the community, expanding ACNet to include community providers is essential to improve autism care. Our objectives were to: (1) understand the current data collection practices, learning needs, capacity, and overall interest of community clinicians in participating in an autism LHN; (2) identify their perspectives on participating in a LHN and ways in which their engagement and interest can be cultivated. Participants were purposively sampled from community physicians who participated in ASD-focused educational programming. In-depth semi-structured interviews were conducted. Analysis of 29 participant interviews yielded five primary themes: Navigating Administrative Challenges, Improving Data Collection Practices, Increasing Provider Confidence and Competence, Breaking Down Silos, and System and Societal Barriers to Achieving Best Practices. This study provides a rich and nuanced understanding of the experiences of community providers regarding the challenges of ASD care provision in the community. Overall, these findings suggest that LHNs have the potential to address several of the issues in community autism care highlighted by community providers.

Artificial Intelligence to support Children with Autism

Children with autism spectrum disorder (ASD) face challenges in communication, social interaction, and behavioral flexibility, which can affect their development and everyday functioning. Artificial intelligence (AI) offers innovative tools to support children with autism by providing personalized and adaptive interventions. AI-powered systems, such as robots, virtual assistants, and machine learning models, can be used to enhance social skills training, improve communication, and manage sensory sensitivities. These technologies can monitor progress, adjust strategies, and provide real-time feedback, enabling more effective, individualized care. This paper explores the potential of AI in autism support, focusing on AI applications for social skill enhancement, early detection, and therapeutic intervention, while also addressing the ethical considerations and challenges involved in integrating AI into autism care.

Communication Barriers and Challenges for Accessing Autism Care: Conventional Versus Alternative Medicine

Communication Barriers and Challenges for Accessing Autism Care: Conventional Versus Alternative Medicine

Coping Styles among Parents of Children with Autism Spectrum Disorders

Introduction: Autism falls under the most common category of Pervasive Developmental Disorders (PDD). It is a lifelong neurodevelopmental disability characterized by persistent and pervasive impairments that include challenges with social understanding and communication, difficulty adapting to new situations, and exhibiting repetitive behaviors or interests. Caring for children diagnosed with Autism Spectrum Disorder (ASD) can be an arduous task for caregivers all around the globe. To tide through the various phases of development, certain coping mechanisms are applied by the parents of children with ASD. An impact on the level of parental distress can be evaluated being based on parental coping styles concerning developmental disabilities. Objective: To assess the coping among the parents of children with autism spectrum disorder and to measure the association of coping styles with selected background variables. Methods: A descriptive cross-sectional, questionnaire-based survey was carried out among 174 parents of children with ASD in selected autism care centers in Kathmandu, Nepal. The data was collected using a questionnaire developed by taking the reference from the Brief COPE questionnaire to evaluate the coping styles used by parents. Descriptive (mean and standard deviation) and inferential statistics (independent sample t-test) were used to analyze data in SPSS vs20. Results: The findings of the study revealed, the majority of the respondents were below 35 years of age (70.1%), female (55.2%), belonged to the Brahmin/Chhetri (63.2%) ethnic group, had a single child (62.1%), belonged to nuclear family (52.9%), were homemakers (34.5%), able to spend sufficiently economically (66.7%) and having a graduate or higher education (71.3%). Similarly, the majority of autistic children were aged between 1 to 5 years (93.1%), and were males (71.3%). In terms of birth order, the majority of children with autism were firstborns (72.4%), did not have any other illnesses (96.6%), and were diagnosed at the age of less than 3 years (62.1%). Overall, the majority of the parents used a problem-focused coping style with a mean of 3.2±0.3, followed by avoidant coping style (2.7±0.4) and emotion-focused coping style (2.5±0.5). Likewise, there was there was a significant association of avoidant coping style with the age of respondents and the number of children they have, emotion-focused coping with ethnicity, and occupation of respondents. Again, the sex of respondents, level of education of spouse, and level of autism of children of respondents were found to have a significant association with both avoidant and emotion-focused coping styles. Overall, the level of education of respondents was associated with overall coping strategies. Conclusion: Based on the findings of the present study, the study concludes that the majority of the respondents used problem problem-focused coping style, followed by avoidant and emotion-focused coping styles. Significant associations were found between various coping styles and demographic attributes such as age, gender, ethnicity, occupation, level of education of respondents as well as their spouse, and the level of ASD of their children. Understanding the coping styles is central to supporting the parents’ coping efforts. Providing parents with effective techniques to manage their emotions can greatly influence how they view their situation, the intensity of the symptoms of their children, and the psychological distress associated with it.

Addressing the Crisis in Access to Autism Care

Addressing the Crisis in Access to Autism Care

A New Frontier in Autism Care and Forensic Psychiatry in Pakistan: Challenges and Innovations

A New Frontier in Autism Care and Forensic Psychiatry in Pakistan: Challenges and Innovations

A qualitative study of physical activity drivers in autistic individuals using COM-B. Autistic and non-autistic perspectives

BackgroundDespite evidence of the health benefits of physical activity in non-autistic populations and the additional benefits for autistic populations, physical activity levels remain stubbornly low in autistic individuals. Understanding the determinants of physical activity is essential in order to support intervention development. MethodsThe current research applied the Theoretical Domains Framework (TDF) and Capability Opportunity Motivation, Behaviour (COM-B) model of behaviour to identify determinants of physical activity behaviour, mechanisms of action, and potentially efficacious behaviour change techniques. Fifteen semi-structured interviews were conducted with autistic adults (N = 4) and children (N = 2), parents of autistic children (N = 4), and stakeholders in autism care and support (N = 5). A deductive approach was taken to map themes onto TDF and COM-B. ResultsParticipants identified three overarching themes: Discordance between autistic and non-autistic perspectives; physically active environments; and autonomy and choice. Eight subthemes were identified and mapped onto COM-B and TDF. Recommendations for intervention development are made and potential behaviour change techniques are identified. ConclusionsGiven the important role of care providers, future research should focus on the attitudes and behaviours of individuals who care for and support autistic individuals to identify barriers and drivers of physical activity promotion, particularly for individuals with high support needs. An argument is made for co-design in future intervention development.

Lessons Learned from a University-School District Partnership to Improve Autism Care in Public Schools

ABSTRACT In 2008 a community-academic partnership was formed between the School District of Philadelphia and our university-based team, Philadelphia Autism Instructional Methods Support. Through this partnership, we conducted a large-scale randomized trial of autism interventions in public schools, which indicated concerns related to implementation fidelity despite high-quality consultation to an evidence-based curriculum. Since the conclusion of the initial study, we have sustained this partnership to continue providing access to evidence-based care for autistic students. In this paper, we describe our iterative process of adapting consultation for autism support teachers, present findings regarding the impact of these services on teacher implementation fidelity, and map elements of our model onto well-established sustainment strategies for implementing change. In sharing this model, we hope to provide a blueprint for organizations conducting similar work and for those interested in empirically testing or applying strategies for sustainment of EBPs in school settings.

A Measure of Attitudes toward Interdisciplinary Healthcare Teams Around Pediatric Autism Care

A Measure of Attitudes toward Interdisciplinary Healthcare Teams Around Pediatric Autism Care

Autism Spectrum Disorder and Oral Healthcare: A Qualitative Study of Parents’ Perspectives in Padang City, Indonesia

Background: Children with autism spectrum disorder, particularly those with mental and behavioral impairments, are affected regarding their oral health and impact their quality of life. Furthermore, perceptions of parents are also important in assessing the planning appropriate oral healthcare. The purpose of this study was to explore parent’s perspectives regarding barriers oral healthcare, tooth brushing behavior and the recommendation strategies to improve oral health status among individual with ASD in Padang city, Indonesia.Method: A purposive sample of six parents in public autism care centre in Padang city participated in focus groups addressing barriers maintain oral healthcare. Focus groups were transcribed and coded using qualitative content analysis. Primary themes included barriers oral healthcare, toothbrushing behavior and recommendations to improve oral healthcare. Content analysis was performed using NVivo software.Result: Parents noted barriers conducted oral hygiene such as drooling, tongue thrust and hard to focus relatively. Mothers noted general improvements in awareness of control diet and have used several media to help their children understand how to brush their teeth properly. Knowledge gaps included until when parents should help children brush their teeth and special oral healthcare. They expect that in the future, the government more attention to oral health of individuals with special needs. The role of the general dentist is crucial, and they expect the dentist to be more patient when caring with patients with special needs.Conclusion: Our findings indicate a need for comprehensive educational intervention and improved communication from policy maker, dentist, public health and prevention leaders in oral health care and dental hygienists to increase oral healthcare knowledge and practice of parents with ASD to better quality of life

Breaking Barriers-The Intersection of AI and Assistive Technology in Autism Care: A Narrative Review.

(Background) Autism increasingly requires a multidisciplinary approach that can effectively harmonize the realms of diagnosis and therapy, tailoring both to the individual. Assistive technologies (ATs) play an important role in this context and hold significant potential when integrated with artificial intelligence (AI). (Objective) The objective of this study is to analyze the state of integration of AI with ATs in autism through a review. (Methods) A review was conducted on PubMed and Scopus, applying a standard checklist and a qualification process. The outcome reported 22 studies, including 7 reviews. (Key Content and Findings) The results reveal an early yet promising interest in integrating AI into autism assistive technologies. Exciting developments are currently underway at the intersection of AI and robotics, as well as in the creation of wearable automated devices like smart glasses. These innovations offer substantial potential for enhancing communication, interaction, and social engagement for individuals with autism. Presently, researchers are prioritizing innovation over establishing a solid presence within the healthcare domain, where issues such as regulation and acceptance demand increased attention. (Conclusions) As the field continues to evolve, it becomes increasingly clear that AI will play a pivotal role in bridging various domains, and integrated ATs with AI are positioned to act as crucial connectors.

CHILD WITH AUTISTIC SPECTRUM DISORDER: CARE AND CHALLENGES

Autism Spectrum Disorder is a multifaceted neurodevelopmental condition, presenting unique challenges for children and their families. Characterized by a wide spectrum of symptoms and challenges, autism presents a unique set of demands on caregivers, educators, and healthcare professionals. The journey of raising an autistic child is a multifaceted one, requiring a deep understanding of the child's needs, strengths, and potential. In this article, we embark on an exploration of the intricate care and challenges that accompany raising an autistic child, while also shedding light on the recent scientific advancements that have transformed our approach to this condition. This article explores the care and challenges associated with raising autistic children, incorporating recent scientific advancements.
 The purpose of this article is to provide a comprehensive overview of the care and challenges associated with raising an autistic child, while also highlighting the scientific advancements that have shaped suggested approach to autism care. The critical areas such as early diagnosis and intervention, the role of Individualized Education Plans, sensory sensitivities, family support, and the transformative potential of advancements in assistive technologies will delve into within the frame of this paper.
 Understanding the unique needs of autistic children and addressing their challenges requires a comprehensive and up-to-date knowledge base. Autism is a condition that manifests differently in each individual, and recent scientific advancements have greatly expanded our insight into its complexities. By navigating the evolving landscape of autism research and care, it is possible to provide more effective support to children with autism and their families.

H - 16 Providing Care to Spanish-Speaking Families in an Autism Clinic: Insights from Bilingual Spanish-English Speaking Trainees.

Bilingual trainees at the Center for Autism Care (CAC) present insights from working with Spanish-speaking families with the integration of an interpreter during an autism evaluation. Two Spanish-English speaking clinical psychology trainees observed evaluations conducted by the supervising psychologist via Spanish-English interpreters. Trainees gathered observational data through a frequency count of interpretation difficulties within the course of six evaluations for autism spectrum disorder (ASD) thus far. The observations included an interpreter who frequently works at CAC and other professional interpreters who serve Children's Health clinics. A frequency count for type of error and content of error was collected within evaluations supported by various interpreters. A total of 41 errors in interpretation were observed across six autism evaluations during consent, interview, and feedback. Errors were categorized into types of errors (e.g., truncated message, incorrect interpretation, direct question from family, and direct clarification from interpreter) and content of errors (e.g., routines, restricted and repetitive behaviors, social communication, and comorbid diagnoses). 68.3% of interpretation errors included semantic content specific to ASD or discussion of comorbid diagnoses. 44% of interpretation errors consisted of a message being truncated. Findings indicate that the bulk of interpretation errors occurred when interpreting autism-specific terms. Despite limited encounters, our observations indicate that interpretation of patient-specific information, including specialized diagnostic details of ASD, is most susceptible to misinterpretation. Future directions may include exploring the utility of a handout to support interpreter knowledge of specialized terms to ensure Spanish-speaking families receive optimal care.

A Multisystem Approach to Improving Autism Care.

Children with autism face significant barriers to accessing evaluations and intervention services often because of confusing referral processes, lack of centralized coordination across organizations serving children with autism, insurance coverage gaps, multiyear waitlists for diagnostic services, and limited provider knowledge about autism. Racism and systemic inequities exist and persist in autism care across the United States. This article reviews targeted initiatives implemented by a multidisciplinary team to advocate for, and address barriers faced, by autistic children and their families in Washington, DC. We describe initiatives across multiple levels of the health care system including: 1. infrastructure-building initiatives (eg, coalition-building, policy, and advocacy); 2. enabling services (eg, population- and community-level supports that increase provider capacity to serve children's and families' needs); and 3. direct services (eg, innovative, gap-filling programs that directly serve children and families). We review outcomes and describe lessons learned.

Digital trends in autism: a scoping review exploring coverage of autism across YouTube, Twitter, and Facebook.

Autism continues to be a leading neurodevelopmental disorder across adult and pediatric populations that transcends racial, ethnic, age, and socioeconomic groups worldwide. Autism care and treatment also exerts immense costs on the healthcare system and lost productivity which are partly attributed to the existing resource limitations globally. Organizations, campaigns, and policies exist worldwide in increasing equity and accessibility of resources and services to individuals with autism. In the context of our digital era, a wealth of information is also more readily available on autism through electronic communication including social media platforms. As YouTube, Twitter and Facebook are ever-growing and among the leading social media platforms in contemporary times, examination of content covered on autism across these communication mediums is timely and warranted. This review consolidates findings from 32 sources on the sources, formats, and nature of content covered on YouTube, Twitter, and Facebook pertaining to a wealth of dimensions surrounding autism. Strengths and limitations of the studies and endeavors are presented. Implications for future campaign development, health equity, health policy, neurodiversity, and patient care are also delineated. Lastly, recommendations for future research and practice are discussed which present directions for tapping into the potential of YouTube, Twitter, and Facebook as health communication mediums across the ever-changing autism landscape.

The Earlier, the Better? An In-Depth Interview Study on the Ethics of Early Detection with Parents of Children at an Elevated Likelihood for Autism

Autism is increasingly viewed as an expression of neurodiversity deserving accommodation, rather than merely as a disorder in need of remediation or even prevention. This reconceptualization has inspired calls to broaden the ethical debate on early autism care beyond matters of efficient screenings and effective interventions. We conducted 14 in-depth interviews with 26 parents of infants at an increased likelihood for autism (siblings, preterms and children with persistent feeding difficulties) to understand which benefits and risks these parents see for the implementation of a systematic, early autism detection program in our region. With this study, we aim to contribute empirically to the ethical debate on good and just early autism care in the age of neurodiversity. Data were analyzed according to the QUAGOL-methodology. Three main themes emerged from our analysis. In their evaluation of early autism detection, parents discussed how a diagnosis helps gain a different perspective fostering understanding and recognition for both child and parent. Second, a diagnosis supports parents in adjusting their parenting practices, to justify this deviation from “normal” parenting and to strive for such adjusted environments beyond the nuclear family. Third, an autism diagnosis induces ambiguities parents need to navigate, involving questions on whether and when to mobilize the diagnostic label and which language to use to talk about autism. We discuss the complex position of parents of a (potentially) autistic child in terms of moving back and forth across the ab/normal binary and describe implications for the ethical debate on early autism detection.

Pediatric and psychiatric models of autism care in Mexico: Differences in diagnostic tools and prescribed interventions.

Low- and middle-income countries face heterogeneity in the way clinicians' approach Autism Spectrum Disorder (ASD) diagnosis and treatment. The current study analyzes the diagnostic tools, laboratory tests, pharmacological and psychosocial interventions received by patients during the steps to diagnosis and treatment of two specialized care centers. Researchers interviewed families with a child with ASD receiving services at either a child psychiatric or a pediatric hospital. Of the total sample, 47% reported clinicians not using a diagnostic tool, 20% reported not receiving any psychosocial intervention, and 88% reported receiving a pharmacological prescription. Patients at the pediatric hospital were more likely to receive interventions with some components of Applied Behavioral Analysis, Early Start Denver Model, Treatment and Education of Autistic and Related Communication Handicapped Children, and Sensory integration therapy; while patients at the psychiatric hospital were more likely to undergo learning, daily living skills, and socialization therapies. Patients at the psychiatric hospital received significantly more requests to obtain auditory and vision tests whilst genetic testing and imaging were more common in the pediatric hospital. The range and variability in terms of diagnostic tools, laboratory tests, and treatment options observed for both sites reflect a lack of consensus. Recommendations to improve ASD diagnostic and treatment in Mexico are given.

Provider Perspectives on Telehealth Services for Children with Autism Spectrum Disorder During the COVID-19 Pandemic.

The purpose of the current study was to explore provider perspectives on the strengths and challenges of telehealth services (e.g., behavioral interventions, physical, speech, and occupational therapy, medication management) for children with ASD during COVID-19 related shutdowns. From September 2020 to May 2021, we conducted qualitative interviews with 35 providers across multiple disciplines from 17 sites in the Autism Care Network. Qualitative data was analyzed using a framework approach and common themes were identified. Providers across clinical disciplines identified strengths of the virtual model, such as its flexibility and the opportunity it provided to see children in their home environment. They also indicated that some interventions worked better virtually than others, and that there were several factors that impacted their success. Respondents were generally satisfied providing parent-mediated interventions but expressed mixed satisfaction in using telehealth for direct-to-patient care. Results suggest that telehealth services for children with ASD could be a helpful tool in decreasing barriers and improving service delivery, especially when tailored to the individual needs of the patient. More research is needed on the factors contributing to its success in order to eventually inform clinical guidelines regarding the prioritization of children seen for in-person visits.

Enhancement of The Physical Environment Toward Supporting Autism Care Through Parents Financial Status and Government Support

The physical environment is an important part of autism care. Creating care environments tailored towards the individual with autism needs is essential for high-quality care and is increasingly recognised as being associated with improved health and well-being among them. Nowadays, care should be holistic and view the person behind the disability, taking that their perspective and treating them as a unique individual. Despite the emerging focus on autism care approaches, the physical environment is still not considered as an integral part of care, and relatively little attention has been paid to environmental aspects. However, the physical environment has a great potential to facilitate or restrict care processes in a broad range of care settings, not least in care centre facilities for people with autism. The research focuses on ways to determine the inclination on the physical environment to support the autism individual among parents. Structural equation modelling using the partial least squares method with bootstrap will be used to test the research model. The findings of this study indicated that government support received are critical in determining parents’ attitude but there is no substantial relationship between their financial status and attitude. Likewise, parental attitudes play an important role in enhancement of the physical environment toward supporting autism care.