Disrupted life narratives of children in care with neurodevelopmental disabilities: Whose story is it?

Tortorelli, Christina; Choate, Peter; Badry, Dorothy

doi:10.1016/bs.dnb.2023.05.006

Cited by 2 publications

(2 citation statements)

References 43 publications

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“…When they are allowed to be open or feel safe to do so, the genuineness of relationships with caregivers, professionals, and the community at large remains very possible. They should also have the right to tell their story, as it is their story to tell [44][45][46]. Stereotypes lead to stigmatization arising from a single story of incapacity which flattens the experiences, capacities, and opportunities of persons with FASD [8].…”

Section: Discussionmentioning

confidence: 99%

FASD: The Living Experience of People with Fetal Alcohol Spectrum Disorder—Results of an Anonymous Survey

Hargrove,

Lutke,

Griffin

et al. 2024

Disabilities

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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.

show abstract

Section: Discussionmentioning

confidence: 99%

FASD: The Living Experience of People with Fetal Alcohol Spectrum Disorder—Results of an Anonymous Survey

Hargrove,

Lutke,

Griffin

et al. 2024

Disabilities

View full text Add to dashboard Cite

show abstract

“…When they are allowed to be open or feel safe to do so, the genuineness of relationships with caregivers, professionals and the community at large remains very possible. They should also have the right to tell their story as it is their story to tell [42]. Stereotypes lead to stigmatization arising from the single story of incapacity which flattens the experiences, capacities and opportunities for persons with FASD [8].…”

Section: Discussionmentioning

confidence: 99%

FASD: The Living Experience of People with Fetal Alcohol Spectrum Disorder – Results of an Anonymous Survey

Hargrove,

Lutke,

Griffin

et al. 2024

Preprint

View full text Add to dashboard Cite

Fetal Alcohol Spectrum Disorder (FASD) is considered a lifelong disability that has been framed by 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 expands upon prior survey work which illustrated a multitude of early onset physiological issues occurring at rates much higher than typical of the general population. The current project, again using an anonymous survey methodology, seeks 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 advresity in childhood, schooling, employment, housing and finances, involvement with the criminal justice system as well as relationships and parenting. Results inform how supports can be enhanced and targeted with a goal of improving the quality of life. 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.

show abstract

Disrupted life narratives of children in care with neurodevelopmental disabilities: Whose story is it?

Cited by 2 publications

References 43 publications

FASD: The Living Experience of People with Fetal Alcohol Spectrum Disorder—Results of an Anonymous Survey

FASD: The Living Experience of People with Fetal Alcohol Spectrum Disorder—Results of an Anonymous Survey

FASD: The Living Experience of People with Fetal Alcohol Spectrum Disorder – Results of an Anonymous Survey

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