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Cultural Differences in Autism Assessment

Leigh Ann Tipton, M.A. Geovanna Rodriguez, B. A. Lisa Kowalko, B. A. Jan Blacher, PhD. University of California, Riverside. Cultural Differences in Autism Assessment. Presented at the NASP Annual Convention; February 21-24, 2012; Philadelphia, PA. Smooth Sailing: IES Grant # R324A110086.

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Cultural Differences in Autism Assessment

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  1. Leigh Ann Tipton, M.A. Geovanna Rodriguez, B. A. Lisa Kowalko, B. A. Jan Blacher, PhD. University of California, Riverside Cultural Differences in Autism Assessment Presented at the NASP Annual Convention; February 21-24, 2012; Philadelphia, PA Smooth Sailing: IES Grant # R324A110086

  2. Support • Education • Advocacy • Resources • Community • Hope

  3. Outline • Background • Ethnicity Breakdowns • Screening and Assessment • What’s available • Observations • Family Considerations • Resources! • Look for this symbol for handouts and discussion!

  4. Guiding Questions • Are behaviors of some children with autism not considered to be problematic by people of certain cultural background, thus resulting in the child not being referred (Dyches et al., 2004) ? • How do families cultural backgrounds affect the identification of students with ASD (Chabon, Brown & Gildersleeve-Neumann, 2010)? • How do socioeconomic status and access to services affect the identification of ASD’s in students of ethnic minority backgrounds?

  5. “Disabilities are culturally defined. Every culture has different parameters for typical and atypical development. Some cultures accept a wide range of diversity in behavior and development” ( Harry, 1992).

  6. Defining culture • Culture: Integrated patterns of human behavior that include communication styles, customs, beliefs, values, and institutions that give a group with a common heritage a sense of “peoplehood” (McIntyre, 1997) • Cultural Sensitivity: Understanding the differences among cultures in relation to the family system increases the likelihood that interventions will be appropriate and effective (Wayman, Lynch, & Hanson, 1990)

  7. Misconceptions about Culture • We must recognize that culture is not static or unitary and we cannot stereotype different ethnic groups (i.e., low achieving, poor) • Culture is complex and dynamic in which it often reflects one’s beliefs, how one learns, what one values and how one interacts with others (Gutierrez & Rogoff, 2003; Klingner & Soltero-Gonzalez, 2009; Rogoff, 2003)

  8. Misconceptions About Cultural Diversity Most people identify with only one culture Everyone in a family shares the same values • People from the same nation or geographical region, or those who speak the same language, share a common culture • Families from the same culture share the same values Aldridge, Calhoun, & Aman, 2000

  9. Ethnicity Breakdown

  10. Population Background Ethnicity of School Psychologists Ethnicity of U.S. Autism Population • 37,893 credentialed in 2004 (Charvat, 2005) • 92.55% White • 2.99% Hispanic/Latino • 1.94% Black/African American • .94% Asian/ Pacific Islander • .82% American Indian (2004-2005 NASP membership survey) • Total (2007): 370,535 students receiving special education under “autism” • 67.2% White • 12.4% Hispanic/Latino • 14.2% Black/African American • 5.5% Asian/ Pacific Islander • .74% American Indian (2007; www.ideadata.org)

  11. Population Background

  12. California Specific Autism in the DDS system 34,656 receiving regional center and developmental center services • 40.1% White • 27.7% Hispanic/ Latino • 8.4% Black/ African American • 9.1 % Asian/ Pacific Islander • .2% American Indian • 10.6% Other Autism Spectrum Disorders, Changes in the California Caseload, DDS (2007)

  13. Race vs. SES • There is a significant difference in middle and low income parents’ advocacy efforts and often culturally or linguistically diverse families do not have the understanding about the system (Kalyanpur, Harry & Skrtic, 2010) • Latino and African American children less likely to receive timely medical care, mental health services and pediatric services (Alegria, et al., 2002; Brousseau et al., 2005; Flores et al., 2005 & Zimmerman, 2005)

  14. What is the concern? • Children with autism spectrum disorders (ASD) have been categorized as “an underidentified and underserved group” (Ruble , Heflinger, Renfrew & Saunders, 2005) • Referring to Medicaid assistance and access to services

  15. Defining Autism (C) restricted repetitive and stereotyped patterns of behavior, interests and activities (A) qualitative impairment in social interaction (B) qualitative impairments in communication (II) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (A) social interaction(B) language as used in social communication(C) symbolic or imaginative play (III) The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder (American Psychiatric Association [DSM-IV-TR], 2000).

  16. Epidemiology and Autism Speaks: Global Opportunities Available at http://www.autismepidemiology.net/epi_initiatives_05-2007.pdf

  17. US Statewide Research • Multistate data from 14 states (CDC, 2007) • ASD higher prevalence in white children than African American children • Hispanic children had lower rates than both white and African American children Centers for Disease Control and Prevention. (2007). Prevalence of autism spectrum disorders- Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2002. Surveillance Summaries, February 9, Morbidity and Mortality Weekly Report, 56 (No. SS-1).

  18. “The prevalence and incidence of autism is universal and not correlated with race or ethnicity (Bertrand et al., 2001).”

  19. Discussion Questions • Despite APA (2000) report that ASD’s are reported to be equal across all ethnic backgrounds. • How can we interpret these discrepancies? • What can we do about it?

  20. Cultural Concerns for ASD Diagnoses • Cultural influences affect the perception of symptoms, prognosis and treatment (Mandell & Novak, 2005) • Although there is little variation in the behavioral manifestation of ASD symptoms (APA 2000) • The expression of symptoms may be vulnerable to the culture in which one is acculturated (Lotter, 1978) • Awareness of ASD criteria often different across cultures

  21. How can it differ? • Recent disparities between race, ethnicity and socioeconomic status • Medicaid: • Diagnosis of white children: 6.3 years • African American children: 79 years • Latino children: 8.8 years (Mandell et al., 2002) • Survey of caregivers: • Ethnic minority children and white children age of diagnosis the same • “Near-poor”children diagnosis were later than those above the poverty line or on gov. assistance (Mandell et al., 2005)

  22. Disparities in Diagnosis and Access to Health Services for Children with Autism: (Liptak et al., 2008) Adjusted Odd’s Ratio’s for Access to Care Based on Logistic Regression *p<.05, **p<.001

  23. Screening and Assessment

  24. Problems with Norms-Referenced Testing • Not representative of culturally and linguistically diverse (CLD) children • Poor performance on measures • Content bias/linguistic bias • Over-identification/Under-identification Example: labeling and pointing to objects is not a common experience shared linguistically by Hispanic children. (Anderson, 2002)

  25. Requirements for Screening Tools • Validity • 1.2) How test scores should be used and the population for use. • Reliability • 2.1) Test should report reliability and errors of measurement • When measurement is for the purpose of classification, some measurement erros are more serious AERA, APA & NCME Standards for Educational and Psychological Testing (2008)

  26. Reliability and Validity • Reliability and Validity above .80 for screening and .90 for individual decisions (Salvia & Ysseldyke, 2007) This is what we want!

  27. Sensitivity and Specificity • Both sensitivity and specificity should be no less than 80% for a developmental screening (Meisels, 1989) • Sensitivity- proportion of correctly identified (true positives) • Specificity- proportion of correctly excluded (true negatives) • Usually a trade-off in which we can accurately identify/not- identify in screening

  28. Sensitivity = True positive rate ( A/ A+C ) Specificity = True false rate ( D/ B+D )

  29. Receiver Operating Characteristic Curve Area Under Curve

  30. What’s available

  31. Cultural Assessment: Concerns and Considerations Few measures validated on bilingual children with disabilities (Chabon et al., 2010)

  32. Discussion Questions • What autism screening tools are available? • Which meet the psychometric standards (.80) minimum? • Which are culturally validated on diverse populations?

  33. Nondiscriminatory Assessment(Theoretically Tested) • Culture- Language Interpretive Matrix (Flanagan & Ortiz, 2001; Flanagan, Ortiz & Alfonso, 2007) • Multidimensional Assessment Model for Bilingual Individuals (Ortiz & Ochoa, 2005; Rhodes et al., 2005) • Test modifications • Use of interpreters • Dynamic Assessment Reynolds & Carson, 2005; Saenz & Huer, 2003; Vasquez-Nuttall et al., 2007)

  34. Multidimensional Assessment Model for Bilingual Individuals • L1: Assessment conducted in native language • L2: Assessment conducted in second language learned • BL: Assessment conducted equally in both languages Rhodes, Ochoa and Ortiz (2005)

  35. Handout • Example Autism Screening Questions • Read through the sample questions. • Discuss as a small group how the provided questions might be culturally confusing or biased.

  36. Autism Screening Tools (1-10) 6. Autism Spectrum Disorders- Diagnostic for Children (ASD-DC) 7. Autism Spectrum Quotient (AQ) 8. Autism Spectrum Rating Scales (ASRS) 9. Autism Spectrum Screening Questionnaire (ASSQ) 10. Baby and Infant Screen for Children with Autism Traits (BISCUIT) • Ages & Stages Questionnaire Social-Emotional (ASQ-SE) • Asperger Syndrome Diagnostic Scale (ASDS) • Autism Behavior Checklist (ABC) • Autism Diagnostic Interview- Revised (ADIR) • Autism Diagnostic Observation Scale (ADOS)

  37. Autism Screening Tools (11-20) 11. Childhood Autism Rating Scale-2 (CARS) 12. Childhood Autism Syndrome Test (CAST) 13. Checklist for Autism in Toddlers (CHAT) 14. Childhood Asperger Syndrome Test (CAST) 15. Communication and Symbolic Behavior Scales- Developmental Profile (CSBS-DP) 16. Early Screening of Autistic Traits Questionnaire (ESAT) 17. Gilliam Asperger Disorder Scale (GADS) 18. Gilliam Autism Rating Scale 2nd Ed (GARS-2) 19. Greenspan Social-Emotional Growth Chart (GSEGC) 20. Infant Toddler Checklist (ITC)

  38. Autism Screening Tools (21-30) 21. Krug Asperger’s Disorder Index (KADI) 22. Modified Checklist for Autism in Toddlers (M-CHAT) 23. Monteiro Interview Guidelines for Diagnosing Asperger’s Syndrome (MIGDAS) 24. Pervasive Developmental Disabilities Screening Test 2nd Ed (PDD-ST-2) 25. Psychoeducational Profile- Revised (PEP-R) 26. Quantitative- Checklist for Autism in Toddlers (Q- CHAT) 27. Scales of Independent Behavior- Revised (SIB-R) 28. Screening Tool for Autism in Two Year Olds (STAT) 29. Social Communication Questionnaire (SCQ) 30. Social Responsiveness Scale (SRS)

  39. Autism Screening Tools Meeting Psychometric Standards (1-19) • Ages & Stages Questionnaire Social- Emotional (ASQ-SE) • Asperger Syndrome Diagnostic Scale (ASDS) • Autism Diagnostic Interview- Revised (ADIR) • Autism Diagnostic Observation Scale (ADOS) • Autism Spectrum Disorders- Diagnostic for Children (ASD-DC) • Autism Spectrum Rating Scales (ASRS) • Autism Spectrum Screening Questionnaire (ASSQ) • Baby and Infant Screen for Children with Autism Traits (BISCUIT) • Childhood Autism Rating Scale-2 (CARS-2) 10. Checklist for Autism in Toddlers (CHAT) 11. Gilliam Asperger Disorder Scale (GADS) 12. Gilliam Autism Rating Scale 2nd (GARS-2) 13. Krug Asperger’s Disorder Index (KADI) 14. Modified Checklist for Autism in Toddlers (M-CHAT) 15. Quantitative Checklist for Autism in Toddlers (Q-CHAT) 16. Scales of Independent Behavior- Revised (SIB-R) 17. Screening Tool for Autism in Two Year Olds (STAT) 18. Social Communication Questionnaire (SCQ) 19. Social Responsiveness Scale (SRS)

  40. And… Validated with Other Cultures (1-10) • Ages and Stages Questionnaire Social- Emotional (ASQ-SE) • Autism Diagnostic Interview Revised (ADIR) • Autism Diagnostic Observation Scale (ADOS) • Autism Spectrum Screening Questionnaire (ASSQ) • Childhood Autism Rating Scale-2 (CARS-2) • Checklist for Autism in Toddlers (CHAT) • Gilliam Asperger Disorder Scale (GADS) • Modified Checklist for Autism in Toddlers (M-CHAT) • Scales of Independent Behavior- Revised (SIB-R) • Social Communication Questionnaire (SCQ)

  41. School Autism Assessment • A comprehensive diagnostic assessment: • Standardized diagnostic measure: ADOS (Lord et al., 2000) and/or ADI-R (Le Couteur et al., 2003) • Plus • Intelligence Testing • Speech and Language Assessment • Adaptive behavior skills assessment • Emotional or behavioral difficulties • Social Skills • May have outside testing with a DSM-IV diagnosis

  42. Other Assessment Steps • Child’s areas of strengths and skill deficits • Performance in relation to others as well as to standards and goals • Effectiveness of instruction and interventions • Eligibility for services

  43. Handout and Discussion • Who usually does the assessments in your school? • Do they do every part of it or is it a team approach? • Recommendation for appropriate assessor handout. • Foreseeable problems?

  44. Observations

  45. Students with Multicultural Backgrounds • Culturally different • Linguistically different • Different behavioral repertoires • Focus should be on addressing issues in misidentification and misdiagnosis.

  46. Observations in General • Should be in a variety of settings • Home • School • multiple classes • times of day • Provide opportunities for a variety of activities • Paired with related interviews • Parents • Teachers • Paired with information from other sources • Discipline/referral records • Academic records • Medical records

  47. Observations in Autism • The current “Gold Standard” in autism assessment: Autism Diagnostic Observation Schedule (ADOS) • Series of structured and semi-structured tasks that involve social interaction between the examiner and the student. • Provides opportunities for social and communicative behaviors which are then scored and combined to produce a quantitative score.

  48. Discussion Questions • Autism is diagnosed behaviorally • Are there culture-specific behaviors to consider separate from the core features of ASD?

  49. During Observation and Testing • Child’s Native Language • Is the child babbling? • If the child's speak stereotyped? • If the child’s speak repetitive? • If the child’s speak of unusual intonation? • Are the child’s gestures appropriate? • Culture and Exposure • The types of toys they have at home • What holidays they celebrate – birthdays • Access to school materials • Age of independence for activities in their culture • Separation from parents

  50. Challenges in observations • Cultures often vary in terms of their social norms • Clark and Zhou (2005) found that in traditional Chinese culture, Autism is considered a “Yin” disorder • Social isolation • Lack of communication • Lack of apathy • Yet, there are aspects of human behavior that develop across cultures that all children can be observed • Response to name • Joint attention • Social motivation

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