Culturally and linguistically diverse students with autism.
The quest for understanding the dynamics of language and the related sociocultural aspects of students with autism continues to be a challenge. Today, the term "autism" refers to a set of descriptions that profile a wide range of children who have impairments in their abilities to initiate and sustain healthy, normal social relationships (Roseberry-McKibbin, 2007). Authorities in the field of autism, namely Kanner and Asperger, described autism as the inability to interact socially. Griffin, Griffin, Fitch, Albera, and Gingras (2006) described children with autism as frequently exhibiting problems in the areas of social, behavioral, academic, motor, and sensory skills. Educators have a responsibility to examine what we know from the research about students with autism, including students from culturally and linguistically diverse (CLD) backgrounds. We must foster an ongoing and systematic awareness that families from CLD backgrounds who have children with autism are not alone. We also must teach these families how to help their sons and daughters to communicate, acquire basic life skills, distinguish between safety and danger, and otherwise prepare for adult life. Furthermore, and perhaps most challenging for educators, we must prepare families to deal with difficult behaviors. CLD students with autism have three particular and pressing challenges: 1) language differences, 2) cultural differences, and 3) disabilities (Baca & Cervantes, 2004; Wilder, Dyches, Obiakor, & Algozzine, 2004). The purpose of this review is to create awareness and propose a theoretical framework for analyzing issues concerning CLD students with autism.
Identifying Autism in CLD Children
Special educators face a critical need to address and document issues related to family involvement, effective intervention, and personnel preparation, in order to ensure that all individuals with autism, including CLD students with autism, may gain an education and improve their quality of life. Current research has not fully investigated the language and sociocultural implications for students with autism. Through the National Survey of Children's Health, Liptak et al. (2008) found that the prevalence of autism was lower for Latinos than in other cultures. Specifically, they found the prevalence rate to be 26/10,000 Latinos with autism versus 51/10,000 children with autism in other cultures. Fombonne (1998) stated more than a decade ago that "the association of immigrant status with autism [is still] uncertain" (p. 59).
Role of Families
As professionals, it is necessary to understand how CLD families view disability in relation to their cultural values. Educators need to emphasize and recognize that the family's native language plays a major role in facilitating patterns of functioning within their communities, promoting well-being, and communicating with all members involved. CLD children with autism may be at increased risk for poor health and low developmental attainments, because linguistic and cultural barriers prevent their families from accessing vital information about special education services. According to Liptak et al. (2008), race, ethnicity, and socioeconomic status affect the timely diagnosis of children with autism. Therefore, it is critical to identify those children in need of early interventions. Yet poor Latino families who have children with autism are less likely to have access to health services in the United States. Furthermore, Liptak et al. (2008) found that Latino parents rated their children's autism as more severe.
Since children with autism are first identified as such after 18 months of age, the parents' expectations drastically change from the perspective of raising a "normal" child to adapting to having a child with autism. This new information creates stress, which may be compounded if the identified child is poor, living in a rural area, and a member of a CLD family, and thus at greater risk for not receiving early intervention services. Often, families from CLD backgrounds cope with the situation differently than families in other cultures. As Callicott (2003) notes, "Working with families who are culturally diverse requires not only objectivity, but also willingness to examine myths and stereotypes" (p. 60).
Support for Families and Children
What support do families and children need? First, the social support begins with extended family members assisting in the process. The process of accepting a diagnosis of autism varies from family to family. It is a complex situation depending on socioeconomic status, language proficiency, education, religion, ethnicity, family structure, and values. Second, friends are the next social support and are very valuable. However, since many children with autism have difficulties socializing, depending on this support can be unreliable. According to Heflin and Alaimo (2007), the lack of social acceptance of some students with autism may lead to further difficulty expressing emotions and understanding the emotions and perceptions of others, which can result in fewer opportunities to develop and maintain friendships. Third, support groups and organizations (such as the National Autism Association) may provide valuable information, services, and social interactions for children with autism and their families. Fourth, the medical provider may become an integral component in the delivery of services. Although this fourth component is critical, many CLD families encounter multiple difficulties in accessing these services.
It is very important to understand the major role played by patterns of acculturation. For CLD families that have recently arrived to the United States, their values (e.g., deference to authorities), beliefs, or fears might lead them to allow educators to be in charge of their son's or daughter's education. Educators need to be aware that cultural integration occurs over time (Rogers-Adkinson, Ochoa, & Delgado, 2003). In order to increase participation by CLD students with autism and their families, Callicott (2003) recommends using a framework known as person-centered planning.
Services for CLD Children With Autism
Barriers to Services
When families with children with autism seek services for their children, they encounter fragmented services, limited information in the native language, and limited personnel. According to Dyches, Wilder, Sudweeks, Obiakor, and Algozzine (2004), "Latinos have been reported to have a lower probability of receiving services than African American families who have children with autism" (p. 220). In Zionts, Zionts, Harrison, and Bellinger's (2003) study, six themes emerged that are critical to the perceptions of CLD families regarding education services: 1) respect for parents and children by school personnel, 2) perceived negativity toward child and/or parents by the school, 3) the need for information and assistance in using community support systems, 4) desire for greater cultural understanding and demonstrated acceptance of differences by school personnel, 5) issues of quality and training among teachers and other school personnel, and 6) improved teacher-parent and parent-parent partnerships (p. 41).
Access to Services
Nehring (2007) reported that families from CLD backgrounds often know very little about services that are available for their children. In addition, she indicated that CLD families frequently face discrimination in obtaining services, due to the families' immigration status and their lack of the following: appropriate services in their community, information, trust, support services, and cultural sensitivity. Callicott (2003) explains that CLD students with autism are at particular disadvantage and risk for unequal representation in traditional service-provision meetings. Elder, Valcante, Won, and Zylis (2003) suggest that an informed family can be critically important for the development of children with autism. In addition, those researchers noted that the more involved the family is, the less stress they experience. Therefore, the critical question is: How can CLD students with autism and their families receive quality education and services? According to Denney, Itkonen, and Okamoto (2007), "There is a growing interest in the experiences of ethnically and linguistically diverse families of young children with special needs and the myriad of early intervention systems of care they encounter in the United States" (p. 326). Professionals working with children with autism need to reach out to CLD families and work toward improving the education and quality of life for students with autism.
Sociocultural and Language Implications
There are many sociocultural and language implications of autism, because the symptoms of autism include difficulties engaging in social interactions and problems in language development and understanding. One of the most critical implications of teaching students with autism is evident in their sociocultural learning contexts. Salend (2008) explains that the wide range of characteristics of children with autism influences the child's ability and personality greatly. He further explains that some children with autism may prefer to be alone and others may learn to find joy in socializing with others. One of the major characteristics of children with autism is a lack of social skills, but a wide range of difficulty levels exists. Children experiencing difficulties in social competence are at major risk of experiencing problems in other areas. On the other hang Rodriguez, Smith-Canter, and Voytecki (2007) note that not all children with disabilities experience difficulties in the area of social competence. Hall (2009) points out the importance of families, friends, and support service personnel, whose observations can generate information about how particular children with autism operate. In turn, this information can lead to insights for arranging resources in the learning context, which provide students with autism opportunities to learn new skills.
Ethnicity, Culture, and Learning
Cultural differences among CLD students with disabilities may account for discrepancies in their learning achievement, particularly in social and language acquisition. Researchers, such as Wilder et al. (2004) and Winzer and Mazurek (1998), suggest that it is important for CLD students with autism to have access to educational resources that mirror their cultures. Zhang and Bennett (2003) argue that "barriers such as language and cultural differences of the family, a lack of understanding of linguistic and cultural diversity by professionals, and a lack of support from the systems are key influences on a family's levels of participation" (p. 52). Since sociocultural factors are critical in learning, it is imperative that educators utilize teaching methods that meet the needs of CLD students with autism. In order to be effective, teachers must be knowledgeable of cultural implications of language in order to ensure positive and affective communication. This is consistent with the findings of Hall (2009), who states, "Individuals with autism are part of families that have an ethnic identity and participate to some degree in the customs of that ethnic community" (p. 141). Teachers who are cognizant of the ethnic communities of their CLD students with autism can draw on their knowledge when planning effective instruction for their students.
Since we understand that many children with autism have a deficiency in social competence, how can we promote social competence with these students? Heflin and Alaimo (2007) describe social competence as the "knowledge and skills necessary to successfully navigate the constantly changing social landscape" (p. 264). Educators and families must work unceasingly together to ensure that CLD students with autism have opportunities to be included in social development activities. For example, we need to know whether children with autism are accepted by peers and, if so, what type of modifications and inclusion services are being provided. We also need to be aware of the autistic condition of the child--does he fight, hit, or push his friends? Alternatively, and of at least equal importance to the assessment of social competence, does the child with autism withdraw from social interactions? These components help educators understand the degree of socialization for each child with autism.
Roles of First and Second Languages
Professionals and educators working with students with autism need to focus on the variables affecting the child's communication (i.e., first language vs. second language). It is important to focus on primary language development within the dominant culture of the student with autism, because he or she will most likely be learning, living, and working in that community (Wilder et al., 2004). Language assessment and instruction for culturally and linguistically diverse students with autism are consistently overlooked. Mueller, Singer, and Carranza (2006) assert that "communication skill can enable individuals with moderate to severe disabilities to become active participants in their homes, schools, and community environments and to promote access to social interaction" (p. 243). Research conducted by Gutierrez-Clellen (1999) and Genesee, Paradis, and Crago (2004) indicates that children with relatively low levels of intellectual ability are not differentially challenged in learning their first language as a consequence of being exposed to and learning a second language. In fact, children with developmental challenges can learn two languages successfully (Roseberry-McKibbin, 2007). On the other hand, Mueller, Singer, and Carranza (2006) point out that almost nothing is known about the processes of learning an unfamiliar language for students who may already have limited communication skills in a primary language.
Evaluating Children's Language
With respect to evaluating the language skills of children with autism, Roseberry-McKibbin (2007) recommends: 1) case study methods, including a parent interview; 2) use of assessment tools that are more culturally and linguistically valid by modifying the tests that are administered; and 3) measurement and description of informal, everyday conversational interactions. Collecting data in those diverse manners would help educators provide better education and services for CLD students with autism. Working collaboratively with families is considered a best practice for educators of CLD students with autism (National Research Council, 2001). When discussing matters with families, educators must present information related to the CLD student with autism in the family's first language. Nehring (2007) concurs that the importance of the language of a child with autism (the family's language) should not be underestimated. One of Tharp's (1994) instructional principles that characterize cultural compatibility is the development of linguistic competence in the language of instruction. Functional language use and purposeful conversational interactions must be an instructional goal. Professionals working with children with autism must realize that many families view retention of their language as not only a priority but also a critical need (Rogers-Adkinson et al., 2003). Clearly, further research is warranted in the field of CLD students with autism.
More effective education may result when parties involved in the treatment of autism comprehend and understand the diverse language and sociocultural needs of the children. CLD training focusing on intervention can provide an important component of efforts to address the educational growth of children with autism while empowering their families. We need to explore the language and sociocultural implications of students with autism and consider how these implications affect the delivery of education and services for CLD students with autism. The lack of extensive research in the field of culturally and linguistically diverse learners with autism suggests that we need families to provide personal stories that enhance understanding of their unique experiences.
It is critical to understand that autism has an array of levels from low to severe; therefore, we must ensure that we plan interventions according to each child's need. For all stakeholders involved in the education of CLD students with autism, it is recommended that a plan for improving their sociocultural and language education include: 1) systematic social skill and language training, 2) a highly consistent and well-structured school day, 3) social mentoring, and 4) modified instruction and assignments. Social skills and language training programs provide strategies that can help children with autism learn how to read social cues, follow rules and guidelines, play cooperatively, and communicate.
Special education provides for individualized and systematic plans for children with disabilities and an array of diverse needs. Therefore, it is necessary that educators plan carefully with multidisciplinary teams and families to develop a unique program to meet the needs of CLD children with autism, taking into consideration the sociocultural and language implications for learning. Ensuring that sociocultural and language components are addressed in the delivery of instruction to CLD students with autism is critical, because those skills are important for functioning in society. CLD families value social skills--indeed, they are the cornerstone of friendships and other relationships that enrich lives. Instead of assuming that all CLD students with autism do not want to have any social interaction, let's recognize that some of those students are very interested inbeing participants in an active social life. In addition, CLD families with children with autism are encouraged to seek and join support groups that address diversity issues, such as the National Autism Association.
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Diane Rodriguez is Associate Professor, Department of Curriculum and Instruction, East Carolina University, Greenville, North Carolina.