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 distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 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 teacher head, 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".