Coming to understand the child has autism: A process illustrating parents’ evolving readiness for engaging in care
Bibliographic record
Abstract
We report results from a large qualitative study regarding the process of parents coming to understand the child has autism starting from the time of initial developmental concerns. Specifically, we present findings relevant to understanding how parents become motivated and prepared for engaging in care at this early stage. The study included primary data from 45 intensive interviews with 32 mothers and 9 expert professionals from urban and rural regions of Ontario, Canada. Grounded theory methods were used to guide data collection and analysis. Parents’ readiness (motivation and capacity) for engagement develops progressively at different rates as they follow individual paths of meaning making. Four optional steps account for their varied trajectories: forming an image of difference, starting to question the signs, knowing something is wrong, and being convinced it’s autism. Both the nature of the information and professional help parents seek, and the urgency with which they seek them, evolve in predictable ways depending on how far they have progressed in understanding their child has autism. Results indicate the need for sensitivity to parents’ varying awareness and readiness for involvement when engaging with them in early care, tailoring parent support interventions, and otherwise planning family-centered care pathways. Lay Abstract What is already known about the topic? Parents of children with autism often learn about their child’s autism before diagnosis and can spend long periods seeking care (including assessment) before receiving a diagnosis. Meanwhile, parents’ readiness to engage in care at this early stage can vary from parent to parent. What this paper adds? This study revealed how parents come to understand their child has autism—on their own terms, rather than from just talking to professionals. It also explained how parents’ growing awareness of their child’s autism leads them to feel more motivated to engage in care by seeking information and pursuing services. Four “optional steps” described how parents’ growing readiness to engage in care at this early stage can vary, depending on their personal process. Implications for practice, research, or policy The results suggest ways that professionals can be more sensitive (a) to parents’ varying awareness of autism and (b) to their varying readiness for being involved in early care. They also suggest ways to tailor parent supports to their individual situation and design care that is more family centered. Not all parents want high levels of involvement. Depending on their personal process, some parents may need care and support that is directed at them before feeling ready for professionals to engage them in care directed at the child.
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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 | 0.015 | 0.024 |
| Meta-epidemiology (narrow) | 0.000 | 0.001 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.009 | 0.009 |
| Scholarly communication | 0.003 | 0.004 |
| Open science | 0.001 | 0.005 |
| 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".