Social Participation Experiences of Families Raising a Young Child With Autism Spectrum Disorder: Implications for Mental Health and Well-Being
Bibliographic record
Abstract
IMPORTANCE: Social participation (SP) is an important facilitator of positive mental health for children and families. Children are dependent on their families to mediate SP, yet families of children with autism spectrum disorder (C-ASD) seemingly limit SP because of behavioral and functional challenges in community environments. The resulting isolation can affect the child's and the family's mental health. OBJECTIVE: To distill the essence of everyday SP experiences in the community of families raising C-ASD. DESIGN: Data collected via in-depth, semistructured interviews with a purposive sample and analyzed in the phenomenological tradition. SETTING: Community. PARTICIPANTS: We recruited seven families with English-speaking parents (ages 18-64 yr) raising one C-ASD (age 2-8 yr). Families with more than one C-ASD or those whose C-ASD was diagnosed with complex medical condition or a neurological or genetic disorder were excluded. RESULTS: The essence of experiences of SP emerged in the form of three themes depicting the mismatch between societal expectations for SP and families' experience: (1) "the struggle," (2) "it's hard to feel like you belong," and (3) what we "have to do." CONCLUSIONS AND RELEVANCE: As a collective, families expressed desire for everyday community SP and could do so only in select environments with core groups. The findings, as interpreted through the lens of mental health promotion, reveal opportunities to reduce barriers and to promote meaningful family SP so as to facilitate positive mental health and well-being through the transactional intersecting characteristics of the child with ASD, the family, and the community. What This Article Adds: This study illuminates the experience of SP of families raising a young C-ASD, highlighting both supports and barriers. Practitioners can use this information to potentially prevent isolation and promote both child and family mental health and well-being.
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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".