Title

Poster Session - An occupational science approach to understanding family and community perspectives on ‘elopement’ and ‘wandering’ of children with autism

Presenter Information

Olga SolomonFollow
Mary Lawlor

Location

Winter Garden

Start Time

16-10-2014 6:00 PM

End Time

16-10-2014 9:00 PM

Abstract

We offer an occupational science approach to ‘wandering’ and ‘elopement’ that are common in children with autism (Anderson et al., 2012; Law & Anderson, 2011; Solomon & Lawlor, 2013). Home, school and stores are the most common locations from which children with autism ‘wander’ or ‘elope’ (Law & Anderson, 2011; Anderson et al., 2012). An occupational science perspective is uniquely suited to address the complexity of ‘wandering’ and ‘elopement’ and to provide a methodology to study this multifaceted social issue as linked to a larger issue of healthcare disparities. This paper generates a novel, translational understanding of the problem and offers policy-relevant insights that are responsive at the child, family and community levels.

The data were collected as part of a larger NIMH-funded, urban ethnographic project that followed 25 African American children with autism ages 4-10, and their families living in Los Angeles County. Nine of the children had a history of wanderingand elopementduring data collection period. Data collection included narratively-based and social network interviews and participant observation in the home, clinical and community settings. The elopementandwanderingnarrative sub-corpus was compiled through computer-generated data-searches. Drawing on narrative, phenomenological and interpretive traditions, we used thematic and narrative analyses to capture the emic perspectives of the study participants. Our primary focus was on how the mothers experienced and narrated ‘wandering’ and ‘elopement’, and the responses to these behaviors by professionals, e.g. service coordinators and law enforcement personnel. Perspectives and experiences of professionals, such as teachers and advocates reflected in the data were also analyzed.

Our findings suggest that the problem of ‘elopementand wandering begins with description and naming, making the gap in professionals’ knowing enoughabout the families especially visible (Lawlor & Mattingly, 1998, 2009) and obfuscating the impact on parents and other caregivers. This has consequences for clinical practice and service provision when practitioners do not recognize the urgency of the problem. This gap in understanding families’ perspectives appears to perpetuate the healthcare disparities. Our data also show how both families and their communities are affected by the problem.

The paper demonstrates the unique contribution of occupational science to provide new information on complex social issues related to autism, and to inform the cross-sectional view of large-scale surveys about the problem.

References

Anderson, C., Law, K., Daniels, A., Rice, C., Mandell, D. S., Hagopian, L., et al. (2012). Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics, 130(5), 1- 8.

Law, P., & Anderson, C. (2011). Interactive autism network research report: Elopement and wandering. http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_elopement Accessed on 16.09.12.

Lawlor, M. C., & Mattingly, C. (1998). The complexities embedded in family-centered care. American Journal of Occupational Therapy, 52(4), 259-267.

Lawlor, M. C., & Mattingly, C. (2009). Understanding family perspectives on illness and disability experiences. In E. B. Crepeau, E. S. Cohn, & B. A. Schell (Eds.), Willard and Spackmans occupational therapy (11th ed.). (pp. 33-44) Philadelphia: Lippincott Williams & Wilkins.

Solomon, O., & Lawlor, M. C. (2013). “And I look down and he is gone”: Narrating autism, elopement and wandering in Los Angeles. Social Science & Medicine, 94, 106-114.

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Oct 16th, 6:00 PM Oct 16th, 9:00 PM

Poster Session - An occupational science approach to understanding family and community perspectives on ‘elopement’ and ‘wandering’ of children with autism

Winter Garden

We offer an occupational science approach to ‘wandering’ and ‘elopement’ that are common in children with autism (Anderson et al., 2012; Law & Anderson, 2011; Solomon & Lawlor, 2013). Home, school and stores are the most common locations from which children with autism ‘wander’ or ‘elope’ (Law & Anderson, 2011; Anderson et al., 2012). An occupational science perspective is uniquely suited to address the complexity of ‘wandering’ and ‘elopement’ and to provide a methodology to study this multifaceted social issue as linked to a larger issue of healthcare disparities. This paper generates a novel, translational understanding of the problem and offers policy-relevant insights that are responsive at the child, family and community levels.

The data were collected as part of a larger NIMH-funded, urban ethnographic project that followed 25 African American children with autism ages 4-10, and their families living in Los Angeles County. Nine of the children had a history of wanderingand elopementduring data collection period. Data collection included narratively-based and social network interviews and participant observation in the home, clinical and community settings. The elopementandwanderingnarrative sub-corpus was compiled through computer-generated data-searches. Drawing on narrative, phenomenological and interpretive traditions, we used thematic and narrative analyses to capture the emic perspectives of the study participants. Our primary focus was on how the mothers experienced and narrated ‘wandering’ and ‘elopement’, and the responses to these behaviors by professionals, e.g. service coordinators and law enforcement personnel. Perspectives and experiences of professionals, such as teachers and advocates reflected in the data were also analyzed.

Our findings suggest that the problem of ‘elopementand wandering begins with description and naming, making the gap in professionals’ knowing enoughabout the families especially visible (Lawlor & Mattingly, 1998, 2009) and obfuscating the impact on parents and other caregivers. This has consequences for clinical practice and service provision when practitioners do not recognize the urgency of the problem. This gap in understanding families’ perspectives appears to perpetuate the healthcare disparities. Our data also show how both families and their communities are affected by the problem.

The paper demonstrates the unique contribution of occupational science to provide new information on complex social issues related to autism, and to inform the cross-sectional view of large-scale surveys about the problem.