New Perspectives: Viewing Autism Through a Cross-Cultural Lens Sarah H. Pavitt M.Ed. &

1. New Perspectives: Viewing Autism Through a Cross-Cultural Lens Sarah H. Pavitt M.Ed. & Georgeanne B. C. Hirshey M.Ed.

2. Objectives • Become familiar with operational definitions for topic • Learn about diverse cultural values regarding child development and family • Identify barriers to services and resources for CLD families • Learn strategies for working collaboratively with culturally and linguistically diverse families • Identify topics for further research

3. Autism does not discriminate on the basis of racial, ethnic or social boundaries… “Family income, lifestyle, and educational levels do not affect the chance of autism’s occurrence” (Dyches, Wilder, Sudweeks, Obiakor, & Algozzine, 2004)

4. Operational Definitions regarding multiculturalism

5. Operational Definitions • What is CULTURE? “Culture is a shared system of meaning, which includes values, beliefs, and assumptions expressed in daily interactions of individuals within a group through a definite pattern of language, behavior, customs, attitudes, and practices.” (Zero to Three) • ETHNICITY: Not the same as culture. Information about ethnicity, class, geographic region of the country, and years living in the United States help us define the “ecological niche” through which a family participates. That information does not necessarily tell us what cultural values, beliefs, and behaviors it follows. • CULTURAL COMPETENCE: “Operationally defined, cultural competence is the integration and transformation of knowledge about individuals and groups of people into specific standards, policies, practices, and attitudes used in appropriate cultural settings to increase the quality of services; thereby producing better outcomes (Davis, 1997).

6. Autism Overview & Statistics

7. Autism… • Includes a broad range of disorders that are considered among the most debilitating and severe disabilities that require comprehensive intervention and lifelong support • Individuals with ASD exhibit impairments in social interaction, communication and restricted patterns of behavior, interests and activities • Strikes in early childhood • Affects 4 times more boys than girls • Incidence is 1 in 150 children • Prevalence and incidence is universal and not correlated with race or ethnicity • There is no cure for ASD. Therapies and behavioral interventions are designed to remedy specific symptoms and can bring about substantial improvement

8. Statistics/What we do know • No statistically significant difference exists in prevalence of autism among African-Americans and Caucasian children, however a study of 406 Medicaid-eligible children found that African-American children with ASD received a diagnosis an average of 1.5 years later than Caucasian children did (Mandell et al., 2002). • Latinos have a lower probability of accessing services than African Americans. • According to the Southwest Autism Research and resource Center, Latino and Black children are typically diagnosed two to five years later than whites. • Participation in research of members of certain cultural groups may be inhibited by mistrust, fear and lack of understanding regarding research agendas. This lack of participation may be a reason for limited data on this topic.

9. Cultural Implications of Autism

11. Cultural Reciprocity: Barriers between service providers/agencies often arise when service providers and families do not recognize and accept the other's culture. Looking at perspectives on disability: . Western culture typically views disability from a clinical perspective. Assumptions based upon a clinical perspective: * Disability is a physical phenomenon. * Disability is an individual phenomenon. * Disability is a chronic illness. * Disability requires remediation or fixing.

12. Looking at non-Western cultures… • Other cultures may view disability quite differently. Culturally-based assumptions may contrast sharply with the medical or clinical model: • * Disability is a spiritual phenomenon. • * Disability is a group phenomenon (e.g., the family and society are causal agents). • * Disability is a time-limited phenomenon. • Disability must be accepted, which affects whether the family seeks intervention. • (Harry, 1999)

13. Cultural Implications of Autism • Diverse interpretations of “disability” – these vary widely among cultures and assumptions cannot be made in this regard. • Perspectives on helpers • Limited knowledge on autism in many diverse cultures due to geographical, cultural, and language barriers between professionals and affected families (Welterlin & Larue, 2007)

14. Barriers to Services for CLD Families & Minorities

15. Barriers to Services • Different conceptualizations of child development • Beliefs in etiology • Minimal knowledge base regarding special education systems • Language & communication differences • Financial resources • Immigration status • Psychological obstacles • Employment & family issues

17. Strategies for Working Collaboratively with CLD Families

18. Strategies for Working Collaboratively • Ecocultural approach By incorporating the components of a family’s social and cultural environment to create a “best fit” intervention, the efficacy of and compliance with an intervention is likely to increase significantly (Moes & Frea, 2002; Brookman-Frazee, 2004). • Identification and integration of a family’s strengths and resources. • Examine support systems • Supporting Family Involvement in Evidence-based Practice • Take cultural values into consideration when the school team and the family select treatment targets • Educators and service providers may need to be willing to modify teaching and intervention strategies as appropriate to meet the needs of students with cultural values and experiences different from the dominant culture.

19. Further Research

20. Further Research • Multi-cultural and diversity training for professionals working with CLD families • Further research on incidence among minority and culturally and diverse groups, both among immigrants to the U.S. as well as internationally • Teacher and professional training on best practices for working in culturally and linguistically diverse settings • Further research into discrepancy in access to treatment among diverse groups

21. QUESTIONS

22. References • Davis, K. (1997). Exploring the intersection between cultural competency and managed behavioral health care policy: Implications for state and county mental health agencies. Alexandria, VA: National Technical Assistance Center for State Mental Health Planning. • Harry, B., Kalyanpur, M., & Day, M. (1999). Building Cultural Reciprocity with families. Baltimore, MD: Paul H. Brookes Publishing Co. • Harry, B., Rueda, R., Kalyanpur, M. Cultural Reciprocity in Sociocultural Perspective: Adapting the Normalization Principle for Family Collaboration. Exceptional Children.

23. Contact information: Sarah H. Pavitt shp44@verizon.net Georgeanne B.C. Hirshey gbchirshey@gmail.com