Educating Students with Autism Spectrum Disorders

Research-Based Principles and Practices

Dianne Zager, Michael L. Wehmeyer, Richard L. Simpson, Dianne Zager, Michael L. Wehmeyer, Richard L. Simpson

• Publisher: Routledge
• Year: 2012
• ISBN:
  9781136946578
• Edition: 1
• Topic: Éducation
• Subtopic: Éducation générale

Similar to a handbook in its comprehensive description of the theory and research supporting current practices in the treatment of autism spectrum disorders, this interdisciplinary text shows how the existing knowledge base can be used to explore promising new possibilities related to the field's many unanswered questions. Key features include the following:

Comprehensive – This is the first book to consider the history and current state of autism as a field in transition, to cover its varied approaches and philosophies, and to describe the interventions used throughout the developmental cycle.

Cross Disciplinary – Serving students with autism necessitates communication and collaboration among professionals from several disciplines as well as family members. The editors have, therefore, brought together divergent perspectives, theories and philosophies in order to demonstrate that scientific evidence, rather than educational orientation, must determine which practices should be selected for use in particular situations.

Research Based – Whereas many existing texts advocate a particular type of treatment, this one recognizes that interventions must be selected and evaluated based on the scientific evidence of their effectiveness.

Integrated Methodology –Chapter authors consider findings from studies that employed single-subject designs, experimental large-scale studies, and qualitative methodology. The inter-relatedness of therapies and disciplines will be highlighted throughout.

Expertise – The volume editors are all highly visible researchers in autism and developmental disabilities. Likewise, each chapter is directed by a senior, highly accomplished author who is nationally recognized for his/her work in the topic being addressed.

This book is appropriate for practicing professionals in education and psychology and for speech/language therapists and other clinicians. It is also suitable as a graduate level text in these fields.

Section III

Education through the Developmental Stages

9

Cultural and Linguistic Diversity and Learners With Autism Spectrum Disorders

Elizabeth West

UNIVERSITY OF WASHINGTON

Pei-Yu Chen

NATIONAL TAIPEI UNIVERSITY OF EDUCATION

Our future student growth is predictable. In 35 years, White students will be a minority in every category of public education as we know it (Garcia & Cuellar, 2006). The term cultural linguistic diversity refers to “behavioral, value, linguistic, and other differences ascribed to people’s cultural backgrounds. Cultural diversity almost invariably includes some level of diversity in how language is understood and used … [the terms] cultural diversity and cultural linguistic diversity [are often used] synonymously” (Barrera, Corso, & Macpherson, 2003, p. 6). The U.S. Department of Education estimates that students from culturally and linguistically diverse backgrounds constitute approximately 32% of the general school population, and a large number of these students are identified as having disabilities and receiving services in special education programs (National Research Council, 2002; Sileo & Prater, 1998).

According to the National Research Council (2001), the effects of high quality early intervention have been verified to improve long-term development of students with autistic spectrum disorders (ASD) in social, communication, and behavioral areas. Access to care for autism-related services, however, has been identified to be limited for racial and ethnic minority families with low parent education, living in nonmetropolitan areas (Thomas, Ellis, McLaurin, Daniels, & Morrissey, 2007). Furthermore, cultural language diversity (CLD) families’ language barriers and beliefs about disabilities may also influence the type and amount of services that children with ASD receive. Having educated parents appears to be a protective factor that may assist in access to early and accurate diagnosis. This diagnosis assists families as it leads to services that are critical to improving long-term development. For example, 10 areas in California have been considered to be “autism clusters” and are associated with areas of higher parental education and close proximity to major autism treatment centers (Van Meter et al., 2010). Schwartz and Sandall (2010) state, “we worry, however, that establishing an early and accurate diagnosis may be related more to where a family lives, whether the parents went to college, and what medical insurance they have than to the young children’s behavioral profiles” (p. 106). In addition to underrepresentation in ASD services, children of minority race and ethnicity with ASD have been reported to receive a different mix of services when compared to White children and appear to receive these services at a later age (Levy, Mandell, Merher, Ittenback, & Pinto-Martin, 2003; Mandell, Listerud, Levy, & Pinto-Martin, 2002).

Although a substantial amount of research has paid attention to important issues in the early experiences of families that have children with developmental disabilities (e.g., diagnosis, services, coping, adaptation), these studies have been conducted with predominantly European American families (Zhang & Bennett, 2003; Zionts, Zionts, Harrison, & Bellinger, 2003). The majority of research in the field of ASD has largely ignored or minimized diversities in race and culture (Connors & Donnellan, 1998). For CLD families that have recently arrived in the United States and who have a child diagnosed with ASD, the challenges can be heightened given the additional psychological, social, and economic costs of immigration (Welterlin & LaRue, 2007). In addition, it may be difficult to access appropriate services and health care (Welterlin & LaRue, 2007). The National Research Council (2001) has acknowledged that there is limited literature which focuses on the experiences of recent immigrant families of learners with ASD in the United States. Further, little is known about how these families access and benefit from services (Welterlin & LaRue, 2007). Despite the limited research that relates to recent immigrant families and CLD families who have resided in the United States for longer periods of time, it is clear that these families exist and are in need of appropriate services.

Wilder, Dyches, Obiakor, and Algozzine (2004) identify a host of culture-specific strategies for meeting the needs of students with ASD. These universal strategies are applicable to children from culturally and linguistically diverse backgrounds (of which immigrant families are a part) that have disabilities, including ASD. This chapter uses these strategies as a benchmark to expand upon evidence-based principles and practices for learners with ASD who are also culturally and linguistically diverse. Specifically, this chapter highlights cultural understanding, teacher expectations, language issues, cultural pluralism in curriculum, and implications for teacher preparation programs.

Historical Background

Studies are beginning to document the underdiagnosis and referral bias of ASD in ethnic communities (Begeer, Bouk, Boussaid, Terwogt, & Koot, 2009). Mandell et al. (2002) have suggested that professionals screen for ASD less often in children from minority than majority groups. Rosenberg, Daniels, Law, Law, and Kaufmann (2009) reported on the trends in ASD diagnoses between 1994 and 2007. Data collected by these researchers suggest that many factors influence initial diagnosis, including ethnicity, race, evaluator types, region, and urbanicity. These findings are congruent with Mandell and Palmer (2005) and Mandell et al. (2008) that indicate disparities in overall diagnosis and treatment patterns in autism by race and ethnicity. These disparities in diagnosis may be the result of professionals’ lack of cultural understanding about behavior expectations and presentations of a specific culture as well as families’ language barriers and various beliefs about the etiology of disabilities. For instance, studies exist to document differences in race and socioeconomic status for African American and Hispanic and Latino/a children; however, little is known about Asian Americans. Parette, Chuang, and Huer (2004) identify Asian individuals as viewing disability very differently from European Americans. Further, these authors “assert that individual family cultural backgrounds have strong effects on a family’s values and beliefs” (p. 115). Chan (1997) reported that Asian parents tend to attribute the cause of a child’s disability to supernatural influences or sins committed by the child’s ancestors. There have been studies of Chinese and Chinese American families that identify parents’ reactions to their children with developmental and physical disabilities. Ryan and Smith (1989) found that almost half of the parents they studied did not understand their children’s problem, due in part to complicated explanations by physicians and limited English fluency. Thus, a child’s race and socioeconomic status may influence the age at which a diagnosis is made.

Brown and Rogers (2003) identify the research base for the effects of cultural factors in ASD as being miniscule. Clearly, a greater focus on multicultural perspectives and ASD is needed. Wilder et al. (2004) and Dyches, Wilder, Sudweeks, Obiaker, and Algozzine (2004) provide a call to action based on the belief that understanding diversity is critical to the development of effective programs for students with autism. Culture does mediate learning.

The field of special education faces the challenge of providing culturally responsive services to adequately meet the needs of children and families from diverse linguistic, cultural, and religious backgrounds. Professionals who serve these families and their children are predominantly from middle class European American cultures and their practices and beliefs may differ dramatically from those of the families they work with (Harry, 1992). Eighty-six percent of special educators are European American while 32% of students in special education are culturally and linguistically diverse (Rosenberg & Sindelar, 2003). The makeup of elementary and secondary teachers in general education is not appreciably different (Gay & Howard, 2000).

Description and Overview

Using scientific-based research to support practices for students with disabilities, including ASD, has been emphasized by the Individuals with Disabilities Education Act (IDEIA; 2004). It is necessary to identify and understand the treatments and methods that produce positive outcomes as proven by research. This research assists by clarifying “what works,” which enables evidence-based treatment decisions. Evidence-based practices for families and children from culturally and linguistically diverse backgrounds must be respectful and responsive. These practices are critical to assessment and intervention because they promote equity and access to programs which are culturally congruent. All interventions for children and families must respect families’ wishes and priorities as a component of family-based service provision (Sandall, McLean, & Smith, 2000).

Several organizations have responded to the call to establish the evidence base for autism. The Council for Exceptional Children (CEC) provides a set of criteria to assist educators and other professionals in determining effective interventions for students with disabilities (CEC, 2008). In addition, a Report of the Children’s Services Evidence-Based Practice Committee identifies a host of best practices for students with ASD (Maine Department of Health and Human Services [MDHHS] & the Maine Department of Education [MDE, 2009]). Results from the MDHHS and MDE Report (2009) identified three interventions to have established evidence: (a) applied behavior analysis (ABA) for challenging behavior, communication, and early intervention behavioral intervention (IBI), (b) picture exchange communication system (PECS), and (c) pharmacological treatments including Haldol, Ritalin, and Risperidol. While various interventions are supported by scientific research, the extent to which the interventions address the needs of CLD children with ASD is unclear.

An emphasis on the development and evaluation of intervention programs for CLD students to improve their reading achievement or English language development has emerged. The What Works Clearinghouse (What Works) publishes intervention reports that evaluate research on curricula and instructional strategies for English language learners. These curricula and instructional strategies focus on students in grades K-6 and are intended to increase skills in reading achievement, mathematics achievement, and English language development. Thirty-one interventions have been reviewed which relate to English language learners and nine interventions are identified as being “potentially positive.”

While the What Works report acknowledges that some programs demonstrate promising effects in improving CLD students’ reading and English learning development, the extent to which these programs meet the needs of students with ASD is not addressed. In addition, the incorporation of multicultural representations into interventions, a critical CLD intervention component (Wilder et al., 2004), was not directly examined. Further, the What Works report focuses primarily on a single type of research methodology— randomized experimental group designs (also called randomized clinical trials [RCTs]; What Works, 2003). The complexities of this situation have several implications for research. Researchers must specify clearly for whom the practice is effective and in what context (Guralnick, 1997). Learners who are CLD and have ASD are a very heterogeneous population and do pose a significant challenge to designs such as RCTs. This heterogeneity can be a challenge because it is difficult to establish equivalent groups. In addition, RCTs require a relatively large number of participants to build the power of the analysis. This power is difficult to achieve with low prevalence rates within diverse populations as compared to learners who are White.

This evidence base leaves practitioners with some supporting scientific evidence of programs for either CLD students or for children with ASD; however, to date no evidence base exists which has examined the combination of CLD and ASD. Effective programs are essential to enhance learning outcomes of CLD students and students with ASD. To address the needs of CLD students with ASD, we build on existing evidence-based practice by reviewing key components of services for CLD students and for students with ASD. The following review provides an overview of considerations in the key service dimension areas of diagnosis and assessment, family involvement, and personnel preparation issues for CLD students with ASD. Next, a list of evaluation criteria is generated to (a) help define critical components of culturally responsive interventions for children with ASD and (b) enhance our understanding about the extent to which existing evidence-based intervention programs for students with ASD addresses the needs of CLD students. Specifically, we compare the critical components of services for children with ASD identified by the National Research Council (2001), the intervention strategies for CLD students with ASD (Wilder et al., 2004), and the educational guidelines for CLD students discussed by Vaughn, Bos, and Schumm (2011).

Considerations for Diagnosis and Assessment, Family Involvement, and Personnel Preparation

As discussed earlier, underrepresentation of CLD students amongst students with ASD has been documented across studies. Further, when diagnosed as having an ASD, learners who are CLD have reportedly received a mix of services and such services may be delayed. This problematic phenomenon calls for a close examination and review of relevant issues regarding diagnosis and assessment procedures. The National Research Council ...