Alignment of Canada's COVID-19 policy response with barriers and facilitators for coping reported by caregivers of youth with developmental delays, disorders, and disabilities.

Introduction: The UNICEF-WHO Global Report on Developmental Delays, Disorders, and Disabilities is an ongoing initiative aimed at increasing awareness, compiling data, providing guidance on strengthening health systems, and engaging country-level partners. Data from its caregiver survey assessing impacts of the COVID-19 pandemic showed that half of youths with developmental delays and disabilities (DDDs) and their caregivers struggled to cope, with a significant portion reporting a lack of supports and difficulty managing the worsening of the child's symptoms in isolation. Governments created service strategies supporting vulnerable groups. Little is known about the alignment between COVID-19 policies for persons with disabilities and their lived experiences. Contextualizing caregivers' experiences can promote the development of tailored public supports for these families following a public health crisis. Methods: Online survey data were collected from June-July 2020, leading to a convenience sample of caregivers of youth with DDDs across Canada. Respondents answered two open-ended questions regarding challenges and coping strategies during the pandemic. We conducted a thematic analysis of responses using inductive coding on NVivo software. Overarching codes derived from the dataset were contextualized using an analysis of provincial policies published during the pandemic. Parallels with these policies supported the exploration of families' and youths' experiences during the same period. Results: Five hundred and seventy-six (N = 576) participants answered open-ended questions. Barriers to coping included family mental health issues, concerns about the youths' regression, challenges in online schooling, limited play spaces, and managing physical health during quarantine. Environmental barriers encompassed deteriorating family finances, loss of public services, and a lack of accessible information and supports. In contrast, caregivers reported coping facilitators, such as family time, outdoor activities, and their child's resilience. Environmental facilitators included community resources, public financial supports, and access to telehealth services. Few COVID-19 policies effectively addressed caregiver-identified barriers, while some restrictions hindered access to facilitators. Conclusion: Prioritizing needs of families of youths with DDDs during public health emergencies can significantly impact their experiences and mental health. Enhancing financial benefits, providing telehealth services, and creating inclusive public play spaces are priority areas as we navigate the post-pandemic landscape.

EEG functional connectivity in infants at elevated familial likelihood for autism spectrum disorder.

BACKGROUND: Many studies have reported that autism spectrum disorder (ASD) is associated with atypical structural and functional connectivity. However, we know relatively little about the development of these differences in infancy. METHODS: We used a high-density electroencephalogram (EEG) dataset pooled from two independent infant sibling cohorts, to characterize such neurodevelopmental deviations during the first years of life. EEG was recorded at 6 and 12 months of age in infants at typical (N = 92) or elevated likelihood for ASD (N = 90), determined by the presence of an older sibling with ASD. We computed the functional connectivity between cortical sources of EEG during video watching using the corrected imaginary part of phase-locking values. RESULTS: Our main analysis found no significant association between functional connectivity and ASD, showing only significant effects for age, sex, age-sex interaction, and site. Given these null results, we performed an exploratory analysis and observed, at 12 months, a negative correlation between functional connectivity and ADOS calibrated severity scores for restrictive and repetitive behaviors (RRB). LIMITATIONS: The small sample of ASD participants inherent to sibling studies limits diagnostic group comparisons. Also, results from our secondary exploratory analysis should be considered only as potential relationships to further explore, given their increased vulnerability to false positives. CONCLUSIONS: These results are inconclusive concerning an association between EEG functional connectivity and ASD in infancy. Exploratory analyses provided preliminary support for a relationship between RRB and functional connectivity specifically, but these preliminary observations need corroboration on larger samples.

EEG functional connectivity in infants at elevated familial risk for autism spectrum disorder.

Background: Many studies have reported that autism spectrum disorder (ASD) is associated with atypical structural and functional connectivity. However, relatively little is known about the development of these differences in infancy and on how trajectories may vary between sexes. Methods: We used the International Infant EEG Platform (EEG-IP), a high-density electroencephalogram (EEG) dataset pooled from two independent infant sibling cohorts, to characterize such neurodevelopmental deviations during the first years of life. EEG was recorded at 6, 12, and 18 months of age at typical (N=97) or high familial risk for ASD (N=98), determined by the presence of an older sibling with a confirmed ASD diagnosis. We computed the functional connectivity between cortical EEG sources during video watching using the corrected imaginary part of phase-locking values. Results: Our findings showed low regional specificity for group differences in functional connectivity but revealed different sex-specific trajectories between females and males in the group of high-risk infants. Specifically, functional connectivity was negatively correlated with ADOS calibrated severity scores, particularly at 12 months for the social affect score for females and for the restrictive and repetitive behaviors for males. Limitations: This study has been limited mostly due to issues related to the relatively small effective sample size inherent in sibling studies, particularly for diagnostic group comparisons. Conclusions: These results are consistent with sex differences in ASD observed in previous research and provide further insights into the role of functional connectivity in these differences.

Barriers to access and utilization of healthcare services for minority-language speakers with neurodevelopmental disorders: A scoping review.

Introduction: Minority-language speakers in the general population face barriers to accessing healthcare services. This scoping review aims to examine the barriers to healthcare access for minority-language speakers who have a neurodevelopmental disorder. Our goal is to inform healthcare practitioners and policy makers thus improving healthcare services for this population. Inclusion criteria: Information was collected from studies whose participants include individuals with a neurodevelopmental disorder (NDD) who are minority-language speakers, their family members, and healthcare professionals who work with them. We examined access to healthcare services across both medical and para-medical services. Method: Searches were completed using several databases. We included all types of experimental, quasi-experimental, observational and descriptive studies, as well as studies using qualitative methodologies. Evidence selection and data extraction was completed by two independent reviewers and compared. Data extraction focused on the barriers to accessing and to utilizing healthcare for minority-language speakers with NDDs. The search process and ensuing results were fully reported using a diagram from the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for scoping review. Results: Following the database search, a total of 28 articles met our final selection criteria and two articles were hand-picked based on our knowledge of the literature, for a total of 30 articles. These studies revealed that minority-language speakers with NDDs and their families experience several barriers to accessing and utilizing healthcare services. These barriers, identified at the Systems, Provider and Family Experience levels, have important consequences on children's outcomes and families' well-being. Discussion: While our review outlined several barriers to access and utilization of healthcare services for minority-language speakers with NDDs and their families, our findings give rise to concrete solutions. These solutions have the potential to mitigate the identified barriers, including development and implementation of policies and guidelines that support minority-language speakers, practitioner training, availability of referral pathways to appropriate services, access to tools and other resources such as interpretation services, and partnership with caregivers. Further research needs to shift from describing barriers to examining the efficacy of the proposed solutions in mitigating and eliminating identified barriers, and ensuring equity in healthcare for minority-language speakers with NDDs.

Global prevalence of autism: A systematic review update.

Prevalence estimates of autism are essential for informing public policy, raising awareness, and developing research priorities. Using a systematic review, we synthesized estimates of the prevalence of autism worldwide. We examined factors accounting for variability in estimates and critically reviewed evidence relevant for hypotheses about biological or social determinants (viz., biological sex, sociodemographic status, ethnicity/race, and nativity) potentially modifying prevalence estimates of autism. We performed the search in November 2021 within Medline for studies estimating autism prevalence, published since our last systematic review in 2012. Data were extracted by two independent researchers. Since 2012, 99 estimates from 71 studies were published indicating a global autism prevalence that ranges within and across regions, with a median prevalence of 100/10,000 (range: 1.09/10,000 to 436.0/10,000). The median male-to-female ratio was 4.2. The median percentage of autism cases with co-occurring intellectual disability was 33.0%. Estimates varied, likely reflecting complex and dynamic interactions between patterns of community awareness, service capacity, help seeking, and sociodemographic factors. A limitation of this review is that synthesizing methodological features precludes a quality appraisal of studies. Our findings reveal an increase in measured autism prevalence globally, reflecting the combined effects of multiple factors including the increase in community awareness and public health response globally, progress in case identification and definition, and an increase in community capacity. Hypotheses linking factors that increase the likelihood of developing autism with variations in prevalence will require research with large, representative samples and comparable autism diagnostic criteria and case-finding methods in diverse world regions over time. LAY SUMMARY: We reviewed studies of the prevalence of autism worldwide, considering the impact of geographic, ethnic, and socioeconomic factors on prevalence estimates. Approximately 1/100 children are diagnosed with autism spectrum disorder around the world. Prevalence estimates increased over time and varied greatly within and across sociodemographic groups. These findings reflect changes in the definition of autism and differences in the methodology and contexts of prevalence studies.

Project Extension for Community Health Outcomes (ECHO) Autism: A Successful Model to Increase Capacity in Community-Based Care.

Individuals with autism spectrum disorder (ASD) struggle to access high-quality health care due to the shortage of trained providers. ECHO (Extension for Community Healthcare Outcomes) Autism is a unique educational program that allows ASD experts to provide knowledge and skills to professionals in local communities to deliver evidence-based care to children with ASD and their families. The model teaches clinicians how to screen and diagnose ASD, as well as manage common co-occurring medical and mental health issues. ECHO Autism is particularly useful for addressing the complex needs of children with ASD and reducing disparities often present in rural and underserved communities. The model can be disseminated globally due to its flexibility in accommodating local and regional differences in social norms and constructs. This article provides an overview of the format of the ECHO Autism model, data supporting the model's efficacy, and discusses future research directions.