PARENT PERSPECTIVES AND PERCEPTIONS OF AUTISM SPECTRUM DISORDER DIAGNOSIS: A SCOPING REVIEW
Bibliographic record
Abstract
BACKGROUND: The growing number of children diagnosed with autism spectrum disorder (ASD) has created interest in examining the process and quality of ASD diagnostic assessments. Families of children with ASD are at the centre of the diagnostic process and their experiences arguably represent one of the most important facets to be explored. There is a growing body of literature examining parents perceptions and perspectives on the ASD diagnostic experience. OBJECTIVES: To review the current literature exploring parental perceptions and satisfaction with the ASD diagnostic process. DESIGN/METHODS: A systematic search was conducted in five databases (CINAHL, EMBASE, Medline MEDLINE, PsycInfo, Scopus) for the period of 1994- October 2016. Articles were screened for relevance and 84 articles underwent full text review and application of inclusion and exclusion criteria. RESULTS: Twenty-seven articles were included. Articles consisted of quantitative questionnaire-based studies, qualitative interviews and focus groups, as well as mixed-method designs. The review findings indicate four central components of the diagnostic experience: 1) the journey to assessment, 2) the assessment process, 3) delivery of the diagnosis and feedback session, and 4) provision of information, resources and support. Parents experiences of the diagnostic process varied considerably given the heterogeneity of effects of ASD on individuals and their families as well as regional variation in ASD diagnostic practice and changes in practice over time. CONCLUSION: Despite variation in experience and satisfaction with ASD diagnostic assessment, studies indicate that diagnosis is a uniquely stressful and emotionally intense experience for parents. The tone and approach employed when the diagnosis was delivered, as well as the information and resources provided at the time of diagnosis were universally recognized as important to parents across studies.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
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 | 0.011 | 0.059 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.003 | 0.002 |
| Bibliometrics | 0.014 | 0.014 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.004 | 0.004 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.002 | 0.001 |
| 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".