Parents’ journeys to their children’s delayed Autism Spectrum Disorder diagnoses
Bibliographic record
Abstract
Autism Spectrum Disorder (ASD) is an increasingly prevalent neurodevelopmental disorder that often requires evidence-based early behavioural intervention to improve developmental outcomes and quality of life. Unfortunately, many children with ASD are diagnosed later than is ideal and opportunities for early intervention are no longer available to them. Parents’ experiences as their children journey through the ASD assessment process are enormously emotional, but few Canadian studies have examined the emotional impact of diagnostic delays specifically. The current dissertation used mixed methods to document parents’ extended journeys to their children’s ASD diagnoses in Canada. Analyses of data collected via a quantitative survey revealed that the time to ASD diagnosis was relatively long (M = 5.2 years; SD = 2.3) despite parents reporting concerns about development early in their children’s lives (Mdn = 3.0 years, Range = 0.5-7.0). Extended diagnostic journeys were often due to lengthy waitlists, multiple appointments, and inaccurate diagnoses. Qualitative interviews with mothers (n = 11) shed light on the emotional rollercoaster that they experienced during the diagnostic process. Feeling of high levels of frustration, confusion, and helplessness were related to efforts to understand their children’s behaviours and this had a powerful negative impact on other areas of their lives (e.g., strained spousal relationships and family finances). A mixed methods integration of the quantitative and qualitative data revealed that stress and dissatisfaction with the diagnostic process were elevated and linked to barriers such as reduced accessibility to the public healthcare system and communication issues with clinicians. These findings have several important implications. Directing parents to support groups and couples counselling, and further clinician training in screening mild and complex differential ASD cases and appropriate communication with parents are paramount to attenuating the emotional rollercoaster experience. In addition, within the healthcare and education systems, policy makers must review eligibility criteria for funding and support services so that children with developmental issues can access early intervention programs even before definitive diagnoses are made.
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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 | 0.002 | 0.010 |
| 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 | 0.002 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.001 | 0.002 |
| 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".