30 Access to Autism Spectrum Disorder services for marginalized families in Canada: A scoping review
Bibliographic record
Abstract
Abstract Background In Canada, despite universal healthcare, immigrant and racially marginalized families face unique barriers when accessing Autism Spectrum Disorder (ASD) services for their children. Exploring these experiences is critical to inform the federal government’s efforts to create a national autism strategy that serves children and families with ASD in Canada. Objectives We conducted a scoping review of immigrant, refugee, and racially marginalized families’ access to, utilization, and experiences with ASD services in Canada. Design/Methods The Joanna Briggs Institute scoping review methodology was used. A literature search in MEDLINE, EMBASE, CINAHL, APA PsycINFO, Scopus, and Web of Science was conducted in August 2023. English and French-language qualitative studies describing the experiences of marginalized families in Canada with accessing and/or using ASD services for their child <18 years were included. To assess eligibility of search results, title, abstract, and full-text screening were conducted independently by two reviewers. For included studies, two reviewers extracted data and appraised articles using the Critical Appraisal Skills Programme qualitative checklist. Results There were 4,489 search results. After de-duplication, 3,804 studies remained. Of these studies, 12 met inclusion criteria – representing 320 immigrant caregivers living in Ontario (n=167), Quebec (n=151), and British Columbia (n=2). Caregivers immigrated from Africa (n=55), Latin America (n=43), Europe (n=25), Asia (n=13), North America (n=11), the Middle East (n=4), and unreported (n=169). Of note, no studies focused on refugees. Common barriers when accessing ASD services were related to: difficulties navigating the health system (wait times, limited resources in the public system, high costs for private services, lack of collaboration between school and healthcare providers), challenges interacting with service providers (feeling unheard, discrimination, lack of continuity of care), and cultural differences (regarding ASD, language barriers, social isolation). In contrast, families identified supportive healthcare and school personnel, provision of culturally-specific multilingual resources, and parent-led peer support networks as key facilitators to ASD service access and use. Conclusion These results highlight gaps in existing research, especially around the experiences of refugee families. Our findings reiterate the importance of greater caregiver involvement in informing evidence-based recommendations to improve Canadian service provision, policy, and research. This national focus is especially relevant, given that 23% of Canadians in the most recent 2021 census are landed immigrants – representing the highest proportion of immigrants in Canada to date and emphasizing the growing need for culturally competent care.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.014 | 0.063 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.005 | 0.004 |
| Bibliometrics | 0.035 | 0.046 |
| Science and technology studies | 0.005 | 0.003 |
| Scholarly communication | 0.008 | 0.003 |
| Open science | 0.003 | 0.004 |
| Research integrity | 0.003 | 0.002 |
| Insufficient payload (model declined to judge) | 0.007 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".