Transparency, Hope, and Empowerment: A Model for Partnering With Parents of a Child With Autism Spectrum Disorder at Diagnosis and Beyond
Bibliographic record
Abstract
While models for conveying a diagnosis of Autism Spectrum Disorder (ASD) are beginning to emerge in the literature, relatively little is known about how a diagnosis is delivered and experienced by families. This study examined the experiences of parents receiving a diagnosis of ASD for their child. Based on a phenomenological approach, a purposive sample of 10 parents (8 mothers, 2 fathers) participated in in-depth, semi-structured interviews aimed at understanding their diagnostic experience. Findings revealed a lengthy, complex, and discouraging assessment and diagnostic process that resulted in parents feeling confused, disempowered, and overwhelmed. Identified themes associated with diagnosis comprised: initial recognition that “something is different”; waiting, worry, and uncertainty; preference for diagnostic information in a hopeful tenor; feeling overwhelmed with information and emotion at diagnosis; processes of grief, relief, and making sense of ASD; and becoming an advocate, expert, and case manager. The importance of empowering parents by providing support, information, resources, and tools for navigating the complexity of service/treatments at the time of diagnosis was emphasized within a parent–professional partnership. A protocol for practice, focused on enhanced parental empowerment, is offered including specific clinical guidelines (what to share, how to share, and when to share) for sharing a diagnosis of ASD.
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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 | 0.010 | 0.011 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.007 | 0.018 |
| Scholarly communication | 0.007 | 0.009 |
| Open science | 0.002 | 0.011 |
| Research integrity | 0.002 | 0.004 |
| Insufficient payload (model declined to judge) | 0.003 | 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".