“We were happy to just get an autism diagnosis”: a mixed-methods study of parents’ experience with the autism assessment protocol
Bibliographic record
Abstract
Purpose Despite increasing autism prevalence, delays in diagnostic assessments persist, likely impeding access to effective early interventions. In 2022, Ireland’s Health Service Executive piloted new, three-tiered Autism Assessment and Pathways Protocol in the Republic of Ireland. Design/methodology/approach An online survey was completed by six parents of autistic children assessed through the novel, Tier 1 Assessment Pathway Protocol, and 25 parents of autistic children assessed through the standard Assessment of Need Pathway participated in this study. All respondents provided quantitative and qualitative data on their experience of the diagnostic assessment pathway, including satisfaction, self-reported stress and perceived child stress. Parental satisfaction and stress were compared between pathways. Findings Some 65% of parents were satisfied with the diagnostic process overall. The process was stressful for both parents and children. There were no significant differences in parents’ satisfaction, stress levels or participant characteristics between the diagnostic assessment pathways. Time to assessment displayed negative correlations with parents’ satisfaction with the overall diagnostic process and self-reported stress. Four themes were identified: falling through the cracks, accessing effective supports, the emotional and psychological impact of the assessment experience and being seen, heard and understood. Research limitations/implications Parents’ experiences did not differ between the pathways, suggesting the viability of the Assessment Protocol Tier 1 pathway. Reducing waiting times and increasing post-diagnostic support to facilitate early intervention should be emphasised. Originality/value To the best of the authors’ knowledge, this mixed-methods study was the first to explore parents’ experience and satisfaction with Tier 1 of this protocol.
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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 | 0.069 | 0.124 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.001 |
| Science and technology studies | 0.004 | 0.003 |
| Scholarly communication | 0.005 | 0.005 |
| Open science | 0.002 | 0.004 |
| Research integrity | 0.001 | 0.002 |
| 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".