“Managing the Wait”: Parents’ Experiences in Accessing Diagnostic and Treatment Services for Children and Adolescents Diagnosed With Autism Spectrum Disorder
Bibliographic record
Abstract
BACKGROUND: Parents of children and adolescents diagnosed with autism spectrum disorder (ASD) report delays in accessing timely diagnostic and treatment services for their children. Research has generally focused on parents' experiences in caring for a child diagnosed with ASD. This study describes the process of how parents access ASD services for their children and adolescents. METHOD: This study used a qualitative research design that was informed by grounded theory methodology. We used constant comparative analysis to develop a process model and a core concept. RESULTS: Seventeen parents of children and adolescents diagnosed with ASD were interviewed. Our process model included 3 main phases: Watchful waiting (noticing suspected behaviors, and searching for assessment and diagnosis); Informed waiting (receiving the diagnosis, facing challenges in accessing treatment services, and realizing the impact of an ASD diagnosis); and Contemplative waiting (pondering the future, reflecting on the past, and making recommendations). "Managing the Wait" was identified as the core category central to parents' experience of this process. This process was found to be impacted by socioeconomic status, parents' skills and capacity to advocate on their child's behalf, and severity of their child's ASD. CONCLUSIONS: Our findings illustrate the many barriers families face during their journey in accessing ASD services. Our results illustrate the need to address wait times for services, and provide education and support services for parents as a means of improving their self-advocacy skills, especially for parents of children and adolescents with severe disability.
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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 | 0.006 | 0.022 |
| Meta-epidemiology (narrow) | 0.000 | 0.001 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.007 | 0.004 |
| Scholarly communication | 0.003 | 0.004 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.002 | 0.003 |
| Insufficient payload (model declined to judge) | 0.002 | 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".