Autism Spectrum Disorder Services Research Articles

'We wait and we wait'-caregiver perspectives on autism spectrum disorder services in the Western Cape Province of South Africa.

Caregivers of children with autism face significant challenges in navigating health, education and other systems of care to ensure appropriate services for their children. In South Africa, for example, many children with autism are reported to be out of schools and waiting long periods for specialist school placements thus adding to the burden of care for caregivers and raising many questions about equity, diversity and inclusion. Here we performed a qualitative study using focus groups to collect data on the perspectives of caregivers of children with autism waiting for school placement in the Western Cape Province of South Africa. We asked families about their experiences of current autism services and for suggestions to improve service delivery. The main theme that emerged was 'We wait and we wait'. Caregivers expressed high levels of frustration with existing autism educational and other services. Perspectives about services were captured under three categories. The first category, 'The costs of waiting' describes the socioemotional, financial and time costs associated with having a child with autism wait for educational services. The second category 'Barriers while waiting' describes the attitudinal, structural, process and communication barriers experienced by caregivers while seeking services for their children. The final category 'Expecting action' describes attitudinal, service and policy expectations that caregivers felt could improve service delivery. Caregivers provided 10 recommendations for autism service improvements. Caregivers of children with autism waiting for educational services in the Western Cape Province of South Africa expressed dissatisfaction with existing services. Efforts to find solutions to providing services and support to children with autism waiting for educational services and their caregivers should be prioritized.

Shifting Paradigms

Shifting Paradigms

Socioeconomic disparities in education placement for children of primary school age with autism spectrum disorder in China.

Relatively little is known about education placements for children with autism spectrum disorder (ASD) in China. While disparities in ASD diagnoses and services for the population broadly are often documented, the presence and determinants of differences in the educational placement of ASD children are less studied and understood. By identifying who is likely to be in segregated settings, we can discern how to best support them and facilitate a possible transition to a less restrictive setting. This study describes four placements (regular schools, special schools, institutions, homes) and their influencing factors retrospectively in a large sample (n = 2,190) of Chinese primary school-aged children (6-12 years old). We divided ASD into severe and mild to moderate categories for analysis. Children with ASD were more likely to study in a regular school (48.60%), while 13.88% were in a special school. Children with severe ASD were placed in less regular settings than children with mild to moderate ASD. However, families with higher socioeconomic status (SES) were more likely to place their children in regular schools than lower SES families if their children experienced mild to moderate symptoms. Children with severe ASD were more likely to be placed in expensive institutions for families with higher SES than those with lower SES. SES disparities in educational placement existed and had two manifestations. It is important to characterize educational placements of students with ASD to determine the extent to which they are placed in general education settings, which are often the preferred placement.

Early Intervention for Children with Autism Spectrum Disorder in Dubai: A Rapid Review and Policy Option Analysis

Background:: Autism Spectrum Disorder (ASD) is a complex and heterogeneous neurodevelopmental disorder that is associated with functional impairments across an individual’s lifespan. The complexity and increasing global prevalence of ASD pose significant strains on healthcare systems. Early Intensive Behavioral Interventions (EIBI) are cost-effective evidence-based interventions that improve outcomes for individuals with ASD, especially when implemented in early childhood. Objectives:: This study reviews the disease burden of ASD and analyzes four potential financing models for EIBI in Dubai. Methods:: A rapid literature review was conducted to synthesize the disease burden of ASD and EIBI services in Dubai. Bardach’s eightfold model for policy analysis was used to analyze four policy options for EIBI in Dubai: (1) Government financing and provision of EIBI through specialized centers, (2) Government financing of EIBI through contracting private providers, (3) Mandating insurance coverage of EIBI for children with ASD, and, lastly, (4) A mixed model that includes both mandating insurance coverage for EIBI and government provision through non-profit organizations. Results:: EIBI services were available in Dubai but were associated with a substantial out-of-pocket (OOP) burden on families. Many young children with ASD were unable to access EIBI. Option (4) of using the mixed financing model of EIBI was optimal in the context of Dubai, based on evaluation criteria, including accessibility, cost-effectiveness, quality, and implementability, with minimal OOP burden on families. Conclusion:: To ease the burden on families with children suffering from ASD, the stakeholders, including the government of Dubai, should consider a mixed financial model to provide EIBI.

The Evolution of Services for Children with Autism and Developmental Disabilities in Nigeria

ABSTRACT Provision of services for autism spectrum disorder (ASD) and developmental disabilities (DD) in Nigeria has been influenced by US and international research and awareness efforts. Forces that impact progress include Nigerian cultural beliefs and family involvement, societal attitudes, inadequate infrastructure and resources, and inconsistent policy and enforcement of disability laws. These forces can impact families both positively and negatively. A lack of standardised teacher training and accreditation programs limit access for students with disabilities to individualised education programs (IEPs) and classroom inclusion. Effective treatments for those with ASD/DD are well-documented, however these effective interventions often do not reach more rural, low-income, or less developed nations or rural, low socioeconomic US schools. The focus of this paper is to thoroughly analyse the evolution of special education and inclusion in Nigeria and the United States and to highlight how US progression influenced Nigeria and the importance of advocating for culturally relevant, low-cost, research-based interventions and outreach African nations such as Nigeria.

Parental Perceptions of Autism Spectrum Disorder (ASD) Services in the UAE

Objective: This qualitative study explored parental perceptions of autism spectrum disorder (ASD) services in the United Arab Emirates (UAE). Methods: Forty-one parents of children with ASD participated in five focus groups to explore their experiences with ASD services in the UAE. These moderated focus groups were recorded, transcribed, coded, and analyzed using thematic analysis. Results: The following primary themes and subthemes were identified: (a) lack of awareness and support, (b) challenges in accessibility and affordability, (c) inconsistent quality of therapeutic services, and (d) Lack of educational inclusion and support. Conclusion: Findings of this study support the need for creating a comprehensive system of care for ASD that is coordinated, is person centered, and promotes continuity of care that improves the outcomes for those “navigating” the often-fragmented system of ASD in the UAE.

22 Families’ Experiences with Autism Service Navigation and Mobile Application-based Support

Abstract Background Navigating services following an autism spectrum disorder (ASD) diagnosis is a challenging and lengthy process. Families of children with ASD increasingly experience difficulty locating and accessing services, leading to the inaccessibility of care. These difficulties were further exacerbated by COVID-19 and little is known about families' experience navigating services during the pandemic. Given the complexities of accessing publicly funded developmental services and the lack of a comprehensive platform to navigate available services, prior to the pandemic our research team developed a mobile application, My Autism Passport (MAP), to assist families in identifying publicly available ASD services. Our goal was to determine whether a mobile application would provide families with greater self-efficacy during these challenging times. Objectives The primary objective of our study was to determine the impact of MAP on caregiver self-efficacy. Design/Methods A randomized controlled trial of 34 caregivers of children under 6 years of age who were given a new diagnosis of ASD in the last year were recruited into the study. 17 were randomized to receive MAP. Access to ASD services and parent self-efficacy scores were collected via questionnaires at baseline and then at 6 months from recruitment in both groups. Self-efficacy was measured using the Parent Empowerment and Self-Efficacy Measurement (PEEM). Results Our study consisted of an ethnically diverse group of participants with varying socioeconomic levels. At baseline, participants indicated an overall mean PEEM score of 131.8 (±28.2) in the control arm, and 138.5 (±23.3) in the App arm at the time of diagnosis (p-value 0.6149). At 6 months following ASD diagnosis, the overall score was 123.2 (±35.7) in the control arm, and 137.3 (±33.3) in the App arm (p-value 0.4413). There was a trend towards decreasing feelings of self-efficacy in the control group compared to those with the App who had a stable self-efficacy score. Conclusion Our study indicates that the use of a mobile app to assist service navigation may be helpful for families in self-navigation for autism services. Data collection and analysis are ongoing for one-year post-diagnosis.

Barriers to referral and evaluation and corresponding navigation services for toddlers screening positive for autism spectrum disorder.

Children from disadvantaged populations receive referrals, diagnoses, and services for autism spectrum disorder (ASD) late or not at all. We describe barriers to referral for and receipt of evaluation for ASD among young children from disadvantaged families and activities by autism family navigators (AFNs) to address these barriers. Trained AFNs offered navigation to families of children aged 16-30 months with positive ASD screens from community health center clinics in 2015-2018. AFNs interviewed families to identify perceived barriers to care and documented system barriers and navigation activities. We coded, categorized, and described barriers and AFN activities. Case studies illustrate barriers and navigation activities. Of 22 participating mothers, 82% were Latinx and 64% were native Spanish-speaking; 71% had household incomes <$30,000/year and 57% had no high school diploma. Half of the families experienced five or more barriers to ASD evaluation, most commonly pragmatic barriers. Information barriers/needs were 5 times more common among Spanish-speaking than English-speaking mothers. One-fifth of families identified negative experiences or expectations of care. System barriers included incomplete screening tests, inadequate referrals, and waiting lists. AFNs implemented navigation activities, most frequently categorized as care coordination (95%), education (68%), social/emotional support (36%), family advocacy (27%), and self-advocacy coaching (23%). AFNs also trained providers and staff to improve screening and referral implementation. In this largely Latinx sample, families experienced numerous barriers to obtaining ASD evaluations for their screen-positive children, likely reflecting the complexity of negotiating both healthcare and educational systems. Trained AFNs can assist parents to overcome barriers to timely diagnosis. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Racial Disparities in Autism Diagnosis, Assessment, and Intervention among Minoritized Youth: Sociocultural Issues, Factors, and Context.

Despite the increasing prevalence of autism spectrum disorder (ASD) among youth, disparities exist when it comes to access to diagnostic assessment and intervention of ASD in clinical and school settings. A review of the literature on sociocultural issues that contribute to these disparities would allow psychiatrists, clinicians, and researchers to better understand these challenges and aid in the development of culturally responsive approaches to support racially, ethnically, and linguistically diverse families of youth with ASD. Disparities in ASD services are primarily due to system-level factors, including access to information or healthcare, stigma, and discrimination. Similarly, interactional factors, such as language/communication barriers, a lack of trust in professionals, and limited training in cultural responsiveness, can hinder support for diverse families of youth with ASD. This review focuses on several areas: (1) structural inequities that contribute to disparities in ASD services, (2) sociocultural issues in assessment and diagnosis, (3) sociocultural issues in interventions and service use, and (4) neurodiversity. This review underscores the importance of including diverse samples in ASD research to improve understanding of the strengths, challenges, perspectives, and preferences of underrepresented and underserved families of youth with ASD. These efforts can lead to culturally responsive service delivery.

Assessing the Quality of Services for Children with Autism Spectrum Disorders in the Northwestern Iran

Background. Autism Spectrum Disorders (ASD) is a neurodevelopmental disorder described by problems in behavioral and social interactions, stereotyped interests, and repetitive actions. Although the quality of ASD services is one of the most important predictors of the effectiveness of treatment and rehabilitation interventions, it has received no research attention in Iran. This study, therefore, aimed to explore the quality of ASD services in the Ardabil and East-Azerbaijan provinces of Iran. Methods. The target population of this cross-sectional study included the parents of 2-14-years-old children with ASD. To collect the required data, a questionnaire consisting of four sections inquiring about demographic, diagnostic, and behavioral features as well as the quality of services was used. Service quality had four domains including participation in decisions, care coordination, continuity of care, and timeliness. Data were analyzed using SPSS-19. Results. According to the results, the participation in decisions with a mean score of 66.84 (41.21) had the highest score. Also, the total score of quality of services was 61.69 (30.32), suggesting that the quality of services delivered to children with ASD was moderate. Conclusion. Although the service quality score was above the average, the gap between the current situation and the ideal situation was large; therefore, there was an urgent need for making interventions to improve the quality of services.

Assessing the social validity of telehealth‐based applied behavior analysis services for autism spectrum disorder

AbstractDuring the COVID‐19 pandemic, applied behavior analysis services for many autistic individuals were transitioned to telehealth. The current study assessed caregiver‐reported quality of life (QoL) and social validity for families of autistic children receiving only telehealth services (n = 96) or a combination of telehealth and in‐person services (n = 173). Barriers to the telehealth experience were analyzed via an ANOVA, and the impact of funding source was analyzed using an independent samples t‐test. Caregivers reported benefit across QoL and social validity items, with scores ranging from 3.31 to 4.44 (1 = least benefit, 5 = most benefit). While many caregivers reported no barriers regarding technology (44.61%), childcare (69.52%), and employment (64.68%), the presence of those barriers significantly impacted QoL and social validity scores. Funding source was not found to have a significant impact. Overall, caregivers found value in their child's telehealth services. Clinicians have an obligation to mitigate barriers to ensure the success of the intervention.

Cultural Considerations in the Assessment and Intervention for Autism Disorder

This systematic review examines cultural considerations in the assessment and intervention of Autism Spectrum Disorder (ASD). It highlights the influence of cultural factors on ASD diagnosis and the variability in assessment practices across different cultures. The review emphasizes the need for culturally adapted intervention strategies and the importance of cultural competence among professionals. It concludes with recommendations for future research, practice enhancements, and policy implications, advocating for inclusive, culturally sensitive approaches in ASD services to ensure equitable care for diverse populations.

Autism spectrum disorder symptom expression in individuals with 3q29 deletion syndrome

BackgroundThe 1.6 Mb 3q29 deletion is associated with neurodevelopmental and neuropsychiatric phenotypes, including a 19-fold increased risk for autism spectrum disorder (ASD). Previous work by our team identified elevated social disability in this population via parent-report questionnaires. However, clinical features of ASD in this population have not been explored in detail.MethodsThirty-one individuals with 3q29 deletion syndrome (3q29del, 61.3% male) were evaluated using two gold-standard clinical ASD evaluations: the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2), and the Autism Diagnostic Interview, Revised (ADI-R). Four matched comparators for each subject were ascertained from the National Database for Autism Research. Item-level scores on the ADOS-2 and ADI-R were compared between subjects with 3q29del and matched comparators.ResultsSubjects with 3q29del and no ASD (3q29del-ASD) had greater evidence of social disability compared to typically developing (TD) comparison subjects across the ADOS-2. Subjects with 3q29del and ASD (3q29del + ASD) were largely indistinguishable from non-syndromic ASD (nsASD) subjects on the ADOS-2. 3q29del + ASD performed significantly better on social communication on the ADI-R than nsASD (3q29 + ASD mean = 11.36; nsASD mean = 15.70; p = 0.01), and this was driven by reduced deficits in nonverbal communication (3q29 + ASD mean = 1.73; nsASD mean = 3.63; p = 0.03). 3q29del + ASD reported significantly later age at the first two-word phrase compared to nsASD (3q29del + ASD mean = 43.89 months; nsASD mean = 37.86 months; p = 0.01). However, speech delay was not related to improved nonverbal communication in 3q29del + ASD.LimitationsThere were not enough TD comparators with ADI-R data in NDAR to include in the present analysis. Additionally, our relatively small sample size made it difficult to assess race and ethnicity effects.Conclusions3q29del is associated with significant social disability, irrespective of ASD diagnosis. 3q29del + ASD have similar levels of social disability to nsASD, while 3q29del-ASD have significantly increased social disability compared to TD individuals. However, social communication is reasonably well preserved in 3q29del + ASD relative to nsASD. It is critical that verbal ability and social disability be examined separately in this population to ensure equal access to ASD and social skills evaluations and services.

Primary Care Pediatricians' Perspectives on Autism Care.

We aimed to explore pediatric primary care provider (PCP) experiences and needs around identification and management of autism spectrum disorder (ASD) in toddlers for the purpose of planning improved supports and services for ASD in the medical home. We recruited 28 PCPs to participate in semistructured interviews via Zoom. Probe questions elicited opinions about current screening and referral procedures, experiences obtaining services for patients, effective communication with parents, physician emotional experience when introducing ASD concerns, practice-based sources of disparities, and larger needs for ASD management in the primary care setting. Interview transcripts were analyzed qualitatively by a multispecialty research team for recurrent themes using grounded theory analysis. Participants were 89% women, ranging in clinical experience from <1 year to >27 years, representing 8 diverse pediatric primary care clinic sites at a Midwest academic medical center. Dominant themes relating to PCPs' cognitive, emotional, and environmental experience of caring for patients with ASD were identified, which reflected the trajectory of ASD identification (the parent lens; the "A" word), referral (the autism labyrinth; provider disempowerment; parent activation as a source of inequities), and long-term management (the "black box"; provider emotional investment). Existing literature and results from this study suggest a need for targeted improvements in primary care to: (1) increase PCP capacity and confidence in communicating concerns of ASD with families; (2) refer for timely diagnostic evaluations in trusted and easy-to-navigate care systems; and (3) increase family activation and capacity to follow up on ASD evaluation and treatment services.

Factors Predicting Poor Mental and Physical Health in Parents of Children with Autism Spectrum Disorder: Results from 2016 to 2019 National Survey of Children's Health.

Although poor health has been reported in parents of children with autism spectrum disorder (ASD), most studies excluded fathers and focused on mental health. We combined 2016-2019 data from the National Surveys of Children's Health to determine child and parent characteristics that predict poor mental and physical health in fathers (n = 818) and mothers (n = 2111) of children with ASD. For fathers of children with ASD, higher parenting stress was significantly associated with greater odds of poor physical health, whereas racial and ethnic minorities and living at 400% above the federal poverty were significantly associated with lower odds of poor mental health. For mothers of children with ASD, greater child sleep problems were significantly associated with greater odds of poor physical health, and two-parent household living 400% above the poverty line was significantly associated with reported lower odds of poor mental health. Continued efforts to reduce parenting stress and improve child sleep problems, along with expanding existing services and coverages of ASD services, especially for low-income families, may help reduce the burden on these families, preventing adverse future health outcomes in this population.

Tele-assessment of young children referred for autism spectrum disorder evaluation during COVID-19: Associations among clinical characteristics and diagnostic outcome.

The diagnosis of autism spectrum disorder (ASD) has traditionally been made through in-person evaluation. While the COVID-19 pandemic disrupted access to ASD services, there has been remarkable growth in research focused on novel ASD diagnostic practices, including the use of telemedicine. We implemented a standard ASD tele-assessment evaluation procedure, including use of a novel remote clinician-coached, caregiver-delivered ASD assessment tool (TELE-ASD-PEDS; TAP), with the goal of continuing to provide diagnostic services to young children and their families during the pandemic. We examined the relationship between child characteristics and diagnostic outcome for 335 children, ages 14-78 months, who received ASD tele-assessment conducted by psychologists and pediatricians in an outpatient clinic of a Midwestern academic medical center. We found that clinicians could make a determination about ASD diagnosis for most children (85%) evaluated using tele-assessment. Child clinical characteristics, including TAP scores and clinician ratings of ASD symptoms, were related to diagnostic outcome (i.e. diagnosis of ASD, no ASD, and Unsure about ASD). When all clinical characteristics were examined together, the presence of specific repetitive behaviors predicted ASD diagnosis. We also found that the TAP is effective for making an ASD diagnosis when used as part of comprehensive tele-assessment evaluation in children ⩾ 36 months of age with delayed language. Our study adds to an increasing body of research supporting use of tele-assessment for diagnosis of ASD. Although further research is needed, telemedicine may help families from different backgrounds and geographic locations to access high-quality diagnostic services.

'We are doing damage control': Government stakeholder perspectives of educational and other services for children with autism spectrum disorder in South Africa.

Autism spectrum disorder is a growing public health concern in low- and middle-income countries like South Africa where there are no plans or policies in place for autism spectrum disorder management. Many children with autism spectrum disorder in South Africa are out of schools and waiting for school placement to become available. This study explored the perspectives of key government stakeholders on educational and other services for children with autism spectrum disorder in the Western Cape Province of South Africa and their suggestion for improving services for these children and their families. Semi-structured interviews were conducted with government stakeholders from the Western Cape Department of Education, Department of Health and the Department of Social development. The main theme that emerged was 'We are doing damage control'. Government stakeholders acknowledged that autism spectrum disorder services were being overlooked because of other demands on government resources. Finding from this study highlighted the need for government departments to work together to develop a strategy for autism spectrum disorder management. Engagement between government and civil society to break down barriers, strengthen systems and develop solutions to improving access to services for children with autism spectrum disorder and their families is recommended.

Autism in the Kingdom of Saudi Arabia: Current Situation and Future Perspectives for Services and Research

Purpose: Autism spectrum disorder (ASD) services and research have evolved over the past decades to mitigate the negative effects of this lifelong condition on those who live with it and the society. The purpose of this article is to shed light on the current state of ASD services and research in the Kingdom of Saudi Arabia (KSA) and discuss future directions to enhance services and research in relation to accessibility and optimizing the journey of care for individuals with ASD. Conclusions: Background information is provided about the KSA and its role in the region as a major country to lead the advancement of ASD services, regulations, awareness, and research. ASD in KSA is gaining more attention and recognition at all levels, which will ultimately lead to larger opportunities to provide a high-quality service at the levels of diagnosis and intervention.

Autism Spectrum as an Etiologic Systemic Disorder: A Protocol for an Umbrella Review.

Autism spectrum disorder (ASD) is the most common neurodevelopmental disorder with a huge prevalence increasing every year (1/44 children). Still diagnosed as a mental disorder, the last 10 years of research found possible causes, risks, genetics, environmental triggers, epigenetics, metabolic, immunological, and neurophysiological unbalances as relevant aetiology. Umbrella methodology is the highest level of scientific evidence, designed to support clinical and political decisions. A literature search for autism aetiology, pathophysiology, or causes, conducted in the last 10 years, at PubMed, Embase, Cochrane, Scopus, and the Web of Science, resulted in six umbrella reviews. Nevertheless, only one quantitative analysis reported risk factors and biomarkers but excluded genetics, experiments on animal models, and post-mortem studies. We grouped ASD's multi-factorial causes and risks into five etiological categories: genetic, epigenetic, organic, psychogenic, and environmental. Findings suggest that autism might be evaluated as a systemic disorder instead of only through the lens of mental and behavioural. The overview implications of included studies will be qualitatively analysed under ROBIS and GRADE tools. This umbrella review can provide a rational basis for a new urgent health policy to develop better and adequate integrated care services for ASD. The methodological protocol has the register CRD42022348586 at PROSPERO.

The impact of COVID-19 on individuals with ASD in the US: Parent perspectives on social and support concerns.

The COVID-19 pandemic’s disruptions to daily routines and services have proven especially challenging for children with autism spectrum disorder (ASD) and their families. The current retrospective study aimed to determine the impact of the COVID-19 pandemic’s social environmental changes on parental ratings of personal and child concerns about family conflict, opportunities for social interaction, and loss of institutional support (school and therapy services). Analyses of responses from families with ASD in the US determined differences in concerns across three time points which were measured simultaneously: prior to COVID-19, at the start of COVID-19, and at the time of survey completion. From our sample of 246 school-aged children, parents retrospectively reported significantly increasing levels of concern for both themselves and their children over time, with parents’ personal concern levels rated consistently higher than their ratings of their child’s level of concern. Concerns about loss of institutional support were higher for parents of children reported as having co-occurring intellectual disability. Further, parents of younger children also reported more concerns about loss of services, as well as more social concerns. For parent ratings of child concerns, children who were reportedly aware of COVID-19 were determined to have higher levels of social concerns and concerns about loss of institutional support. Meanwhile, the child’s age and gender did not impact their parent ratings of child concerns. The increased level of parental and child-perceived concerns over the course of the pandemic suggests a need for improved service delivery and support for these families. The high levels of concerns observed in the current study provide support for the need to assess families’ priorities and tailor services to best meet families’ needs. This will potentially increase the quality of life of family members, and improve ASD services across the lifespan, and improve outcomes.