FASD: The Living Experience of People with Fetal Alcohol Spectrum Disorder—Results of an Anonymous Survey
Why this work is in the frame
A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.
Bibliographic record
Abstract
Fetal Alcohol Spectrum Disorder (FASD) is considered a lifelong disability that has been framed with neurobiological descriptions focused on the brain. These are important features but fail to tell the story of living with FASD. By surveying those with FASD, this work expanded upon prior survey work which illustrated a multitude of early-onset physiological issues occurring at rates much higher than is typical of the general population. The current project, again using an anonymous survey methodology, sought to open up other direct experiences to better understand the complexity of living with FASD. An anonymous online survey was used to gather data on adversity in childhood, schooling, employment, housing and finances, and involvement with the criminal justice system, as well as relationships and parenting. Results indicate high levels of adversity throughout the life span; vulnerability to manipulation, which is connected to involvement in the criminal justice system; struggles with housing; economic instability; and struggles maintaining employment, as well as difficulties with social and familial relationships. Systemic stigma was also identified. Suggestions are offered to inform others on how support can be enhanced and targeted with a goal of improving quality of life, as well as dealing with self-imposed stigma. The survey was developed by adults living with FASD who have served as a long-standing advocacy and educational group influencing policy and practice in the field.
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.
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 | 0.001 | 0.001 |
| 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 | 0.001 |
| 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 it