Serving Hispanic Families with Autism in Marin County
By Tiffany Chi, Monica Guzman Critchfield,
Isaac Stahlhut, and Stacy Frauwirth
For the past two years, the Dominican University of California, Occupational Therapy Department, collaborated with the Marin Autism Collaborative (MAC) to create a culturally relevant resource for Hispanic families of children with autism. According to the American Occupational Therapy Association (2008), an occupational therapist’s role is to promote health and participation with individuals, different groups of people and populations, and to enhance occupational performance. One of the reasons why the field of occupational therapy is involved in this of project is due to the need to provide services to the growing population of Hispanic families in California (U.S. Census Bureau, 2011).
Approximately 5.7% of Marin County of California’s population of children have a diagnosis of autism (Kidsdata, 2010). The Hispanic community of Marin County forms the largest minority group consisting of 15.5% of the population (US Census Bureau, 2011). Minority groups, including members of the Hispanic community, are more likely to be medically underserved and to encounter barriers as they try to gain access to services for their children. Underserved populations within the medical field are groups of people that are unable to obtain medical services (Mundt & Mary, 1998). The factors that contribute to their limited healthcare access include socioeconomic status (SES), race/ethnicity, insurance status, and language barriers (Lykens, Fulda, Bae, & Singh, 2009).
We felt that after a conversation with MAC and a review of the scholarly literature, a “fotonovela” would be an appropriate format to use in order to communicate the signs and symptoms of autism and the accessible resources in Marin County. A fotonovela is a Spanish language photo-book that tells a dramatic storyline (Flora, 1980). Fotonovelas have been successfully used as health education tools for a variety of issues, for example, mental health and HIV (Unger, Molina, & Baron, 2009). We found no published examples of a fotonovela about autism.
The fotonovela was a multi-step project. The first step was to understand the experiences of Hispanic families through recruiting and interviewing those with ASD children in the Bay Area. We asked parents to tell the story of how their child came to be diagnosed with autism. Four families offered to share their experiences with us. We found common recurring themes through the stories, such as denial by the father, the mother taking a large role in seeking out for appropriate services, and the concern about the cost of the services being provided.
The second step was to create a culturally relevant, compelling story that incorporated the common experiences of the families we talked with. The story also included information on the diagnosis and service delivery process.
We met with John Duvall, an associate professor in the Dominican University of California’s department of communication, so we could learn about the scriptwriting and storyboarding process. Utilizing the information given by Professor Duvall, we created a compelling script with assistance from our thesis advisor Stacy Frauwirth. After several rewrites and edits, we developed a dramatic storyline that encompassed all of the previously mentioned common experiences of the families.
The third step was to create a storyboard of the script. Based on the storyline, we created the storyboard by hand drawing the individual scenes in order to help guide the photographer during the photo shoot. Each individual storyboard box gave a general idea of the photo angles in which the scenes were to be shot.
In the fourth step, we recruited the models and a photographer to take the photo shots for the fotonovela. Based on the storyboard, the photographer had a general idea of how the shots were to be taken, but in the end we allowed the photographer to make the final decision in the creative process. The roles needed for the fotonovela were friends, family members, doctors, social workers and a psychologist. During the photo shoot we did not encounter any problems, except for a minor issue during the supermarket scene. The challenge during the supermarket scene was in trying not to draw any attention to the photographer and the actors. We were concerned that other customers would feel uncomfortable. Fortunately, we did not encounter any problems because there were very few customers shopping on the day of the photo shoot.
After the photo shoot, the photos taken were uploaded and arranged into a computer program called “Comic Life.” The story was conveyed from page to page through balloon dialogue added to the pictures. An “Additional Information” page was added to help the reader understand some to the details of the initial steps if their child is under or over the age of three.
MAC will distribute copies of the fotonovela resource guide to different facilities around Marin County. Some examples of the distribution sites are churches, day-care centers, hospitals, The Novato Youth Center, Matrix, and various autism fairs that take place in Marin County.
Evaluation of Fotonovela
Once the fotonovela was completed, copies and a survey were sent out to the families whose narratives were used for the script, practicing occupational therapists, and other professionals for their feedback on the fotonovela. The majority of the feedback given was positive and enthusiastic. All the reviewers felt that the fotonovela would be an effective tool to present information and resources to the Hispanic community.
Some comments were:
“I think it is wonderful that a culturally specific tool has been created. Perhaps there are other tools for other cultures that can be developed as well. A next step would be to share it with Autism Speaks and for it to be added to their free kit downloads.”
“The fotonovela kept my attention. It was professionally done and provided enough information to guide a person on what they should do without overwhelming them with too much medical/educational information.”
A fotonovela is an effective tool for educating minority communities about health and disability issues. The goal of this project was to create a culturally appropriate autism education and resource guide for the underserved Hispanic community of Marin County. Throughout this experience, we were truly appreciative and humbled by those families who were willing to share their stories with us. We also appreciated having had the opportunity to engage with and be exposed to the Hispanic community. This was a great opportunity to provide a culturally sensitive resource to a population who is underserved.
This project bridges the gap in autism awareness within this hard to reach, underserved population by providing an education-resource guide in a culturally appropriate format. Our hope is that this will become a resource that can be universally modified and utilized throughout the state of California.
Tiffany Chi, Monica Guzman Critchfield, and Isaac Stahlhut, are Master of Occupational Therapy candidates at Dominican University of California, Class of 2013. After graduation, they intend to focus their efforts in rehabilitation and school-based settings.
Stacy Frauwirth holds a Master’s degree in Occupational Science and is a PhD candidate at the University of Southern California, Class of 2013. Stacy is an assistant professor of Occupational Therapy at Dominican University of California.
American Occupational Therapy Association. (2008). Occupational therapy practice framework: domain and process (2nd ed.). American Journal of Occupational Therapy, 62, 625-683.doi: 10.5014/ajot.62.6.625
Flora, C. B. (1980). Fotonovelas: Message creation and reception. The Journal of Popular Culture, 14(3), 524-534. doi:10.1111/j.0022-3840.1980.1403_524.x
Kidsdata.org. (2010). Local prevalence of disabilities. Retrieved November 1, 2011, from http://www.kidsdata.org/data/topic/table/special-needs-education-enrollment-disbility.aspx
Lykens, K. A., Fulda, K. G., Bae, S., & Singh, K. P. (2009). Differences in risk factors for children with special health care needs (CSHCN) receiving needed specialty care by socioeconomic status. BMC Pediatr, 9(1), 48-48. doi:10.1186/1471-2431-9-48
Mundt, R., & Mary, H. (1998). Exploring the meaning of “underserved:” A call to action. Nursing Forum, , 33(1) 5-10. doi:10.1111/j.1744-6198.1998.tb00975.x
U.S. Census Bureau (2011). State and County Quick Facts: Marin County, California (2010). Retrieved from http://quickfacts.census.gov/qfd/states/06/06041.html
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