Assessing Diverse Students With Autism Spectrum Disorders

Abstract

You have accessThe ASHA LeaderFeature1 Jan 2011Assessing Diverse Students With Autism Spectrum Disorders Tina Taylor DychesEdD Tina Taylor Dyches Google Scholar More articles by this author , EdD https://doi.org/10.1044/leader.FTR2.16012011.12 SectionsAbout ToolsAdd to favorites ShareFacebookTwitterLinked In http://www.asha.org/Publications/leader/2011/110118/Assessing-Diverse-Students-With-Autism-Spectrum-Disorders.htm Effectively serving students with autism spectrum disorders (ASDs) requires professionals to possess specialized knowledge, skills, and understanding. When students with ASDs are from culturally or linguistically diverse (CLD) families, the professionals assessing and providing services to the students need the additional dimension of how cultural and linguistic differences may affect identification, assessment, and treatment strategies. One of ASHA’s core principles for serving students with ASDs states that speech-language pathologists should “form partnerships with families of individuals with ASDs in assessment and intervention, while incorporating family preferences, honoring cultural differences, and respecting the challenges associated with limited resources” (ASHA, 2006, p. 23). Valuing families as important members of multidisciplinary teams will facilitate the accurate identification of culturally or linguistically diverse—and, in fact, all—students with ASDs. Students with ASDs are not always successfully identified and served, and cultural and linguistic diversity may pose additional challenges. Research indicates that receiving an educational classification of autism varies depending on the racial identity of the student. For example, of students classified as having autism in U.S. schools, African American or Asian/Pacific Islanders are classified at approximately twice the rate as students who are American Indian/Alaskan or Hispanic (Dyches, Wilder, Sudweeks, Obiakor, & Algozzine, 2004). Other research identifies significant disparities in the referral rate and clinical diagnosis of autism among racial/ethnic groups (Begeer, El Bouk, Boussaid, Terwogt, & Koot, 2009; Mandell et al., 2009). This disproportionate representation provokes many questions related to cultural perspectives: Are families from some cultures reluctant to have their children identified as having autism or identified as having a disability at all? Do families of some cultural or socioeconomic groups advocate for a diagnosis of autism rather than mental retardation to avoid stigma? Are behaviors of some children with autism (e.g., avoiding eye contact or displaying hyperactivity or aggressive behaviors) not considered to be problematic by people of some cultures, resulting in the child not being referred (Dyches et al., 2004)? How is the identification of students with ASDs affected by families from other cultural backgrounds who lack the confidence to know what questions to ask or to question what they are told (Chabon, Brown, & Gildersleeve-Neumann, 2010)? How does a mother’s education and knowledge of developmental milestones affect her ability to detect symptoms, advocate for her child, and alter other variable factors that may affect the child’s health (Mandell et al., 2009)? How do socioeconomic status and access to services affect the identification of ASDs in CLD children? The differentiated representation of autism across racial, ethnic, and cultural groups also may be related to skills and practices of schools’ multidisciplinary teams. According to ASHA membership surveys [PDF], 5.3% of ASHA members self-identify as bilingual; 6.9% of ASHA members are from a racial minority group [PDF]; and many SLPs are not sufficiently trained to provide nonbiased bilingual assessments (Chabon et al., 2010). Given those realities, it is likely that culturally responsive assessment practices are not universally followed. School teams may interpret some behaviors such as tantrums, aggression, attachment, eye contact, social interactions, communication, and emotional expression “symptomatically rather than culturally” (Wilder, Dyches, Obiakor, & Algozzine, 2004). Furthermore, teams may be classifying students with ASDs under different labels (e.g., developmental delay, mental retardation, specific learning disability, speech-language impairment, multiple disabilities, emotional disorder, other health impairment) or not classifying them at all, particularly if the child displays mild symptoms that may be confused with cultural differences rather than disabilities (Noland & Gabriel, 2004; Mandell, et al., 2009; Shattuck, 2006). An accurate classification of an ASD often is the catalyst for obtaining appropriate educational services. Providing timely and equitable access to services for students with ASDs begins with a review of screening and assessment practices. ASD Screening Broad-based screening should be available to all children suspected of having an ASD. However, screening is not universal across cultures because of a number of physician and parent factors. For example, the American Academy of Pediatrics recommends physicians follow a detailed surveillance and screening algorithm for detecting ASDs in their patients (Johnson, Myers, & the Council on Children with Disabilities, 2007). However, when physicians rely on subjective determinations rather than conducting comprehensive evaluations, they may over- or under-identify CLD children with ASDs. Research indicates some pediatricians are more likely to attribute autistic features such as communicative and social deficits to language and culture rather than to inherent autistic features (Begeer et al., 2009). If families do not have access to health care services, they may not receive regular care from a provider who could screen for developmental delays. Without access to information and services, CLD children with ASDs, particularly if they are from families with a low socio-economic status, may not be accurately diagnosed (Durkin et al., 2010). Parents’ awareness of ASDs facilitates the involvement of health care and educational professionals. If parents are unaware of typical symptoms, however, they may not refer their child for an evaluation. Although the general characteristics of autism appear to be universal across cultures (Ametepee & Chitiyo, 2009; Papageorgiou, Georgiades, & Mavreas, 2008; Wakabayashi et al., 2007), parental recognition of and concern about the symptoms are not consistent. The three primary diagnostic characteristics of autism—social interaction, communication, and restricted behavioral repertoire—may be interpreted through a cultural lens that can lead to under-, over-, or mis-diagnosis (Dyches, Wilder, & Obiakor, 2001). Table 1 [PDF] provides a description of behavioral characteristics that can be viewed culturally. (For a comprehensive description of multicultural students with special language needs, see Roseberry-McKibbin, 2002.) Recently several culturally and linguistically appropriate materials have been made available to help educate individuals about autism. Although most information about autism appears in English, some materials—including public service announcements, informational books, training manuals, websites, and even children’s books—are available in other languages (see the online resource guide for a sample of available material). ASD Assessment A comprehensive evaluation for determining eligibility for school-based special education services for a student suspected of having an ASD will consist of at least three phases—interview, observation, and testing—and the team should minimize barriers related to cultural or language differences for students who are CLD. For example, if team members are not proficient in the student’s language, a trained bilingual evaluator should be used. Austin (2007) offers recommendations for providing bilingual services in districts in which these services are limited. Tips for working with interpreters can be found on ASHA’s website. Interviews. Gathering information from others will facilitate accurate evaluation results. Conduct a case history by reviewing existing records and by obtaining information through questionnaires in the family’s native language (L1) rather than in the second language (L2). Team members can learn more about the student from parents or guardians, other service providers, and members of the student’s community who share the same culture. Find out what previous communication services the student has received and the effectiveness of those services. Also inquire about the parents’ or guardians’ desires for their child to learn and/or maintain the L1. Observations. Observations in authentic contexts are likely to yield information about how the student functions with different individuals in natural circumstances. The student’s use of L1 and L2 should be observed in various contexts to determine the existence of language impairment, language difference, or both. Relevant questions include: What is the student’s level of expressive and receptive proficiency in L1 and L2? What language is used by the student’s parents, other caregivers, siblings, and neighbors? Does the student know how to join an ongoing conversation in L1 and L2? Does the student adjust his or her language for different contexts and with individuals with different levels of authority (e.g., talking with teachers compared to talking to peers)? Are the student’s interactions with peers developmentally appropriate, regardless of the language being used? Does the student use L1 in different contexts better than L2, or are both languages equally impaired? Has the student received sufficient exposure to learning L2 (e.g., 20 hours per week)? A student who is an English-language learner and who has a language-based disability such as an ASD will have an underlying impairment in language ability that affects the rate of learning, literacy skills, and ability to tell stories and related experiences. The language impairment will affect both languages. Because cultural and social practices influence social communication, a directed observation related to a student’s use of social language is a critical element of a comprehensive evaluation. Using a culturally responsive pragmatic assessment tool will help identify cultural differences versus deficiencies. For example, some African American children use the linguistic device of marking, in which the speaker imitates the words and mannerisms of the communicative partner (Hyter, 2007); marking should be distinguished from echolalia (immediate or delayed repetition of words spoken by others) and from echopraxia (repetition of movements of others). Tests. The Individuals with Disabilities Education Improvement Act of 2004 (IDEA) requires appropriate evaluation of students considered for special education services. For the evaluation to be appropriate, multidisciplinary teams must assess the student in all areas of suspected disability. Each team should use a variety of strategies and tools to gather information; use more than one measure to determine if a disability exists; and use instruments that are technically sound, valid, and reliable. Tests should be selected and administered to avoid racial/cultural discrimination and administered in the form and language to yield accurate information (Gibb & Dyches, 2007). Formal and informal assessments of basic interpersonal communication skills (BICS) and cognitive academic language proficiency (CALP) are critical for culturally or linguistically diverse students being tested for ASD eligibility, even for students who are non-verbal. Under ideal circumstances, a student learning English as a second language could acquire BICS within 6 months to 2 years, whereas CALP takes 5–9 years to develop, depending on age and other factors. However, developmental trajectories may differ for students with ASD. For example, CLD students with Asperger syndrome may develop CALP at a much faster rate than BICS; students with autism who also have intellectual disabilities may develop both BICS and CALP at slow rates; and some culturally or linguistically diverse students who have ASDs may remain in the silent period for much longer than typically developing CLD students (2–6 months). Teams may need to adapt some tests to ascertain the student’s skills and deficits accurately. In addition, teams may choose to give test directions in both L1 and L2 and use a dual scoring system—one score to represent the student’s performance in L1 and the other in L2. Teams also may decide to provide additional time to complete the test items. Furthermore, teams should accept answers in L1 although the test may be given in L2, and note instances of code-switching during the testing situation. Of course, all adaptations to the test or accommodations to the testing situation must be reported and considered when determining eligibility for services. Selecting Appropriate Instruments Many instruments are appropriate for identifying students with ASDs. Level 1 screening measures are intended to be used by physicians in the child’s medical home to differentiate children at risk of ASDs from the general population. Level 2 tools are used in school programs and developmental clinics to differentiate those at risk for having ASDs from those at risk of other developmental disabilities and also as part of a diagnostic evaluation. Examples of Level 2 instruments include: Asperger Syndrome Diagnostic Scale (ASDS) Autism Behavior Checklist (ABC) Childhood Autism Rating Scale (CARS), Gilliam Autism Rating Scale – 2nd Edition (GARS-2) Autism Spectrum Quotient (AQ) – Adolescent Version Social Communication Questionnaire (SCQ) No single measure should be used to determine the presence of an ASD. School teams are advised to select standardized measures that have sufficient reliability and validity for the population being evaluated. Unfortunately, few standardized measures have been adequately validated on bilingual children with disabilities (Chabon et al., 2010). However, some instruments have been modified to respond to cultural differences in populations that are Mexican (Hedley, Young, Gallegos, & Salazar, 2010), Chinese (Wong et al., 2004), German (Bolte & Poustka, 2004), and Japanese (Wakabayashi et al., 2007). Information regarding potentially appropriate measures for assessing children with ASDs is found in the American Academy of Pediatrics toolkit (Johnson et al., 2007). Evaluation teams should use caution when viewing test items through a cultural lens. For example, several items on the Modified Checklist for Autism in Toddlers (M-CHAT) may not necessarily be autism “red flags” because of cultural considerations. Three items dealing with pointing (Does a child point to ask for or to indicate interest in something? Does a child look at something the parent points to?) may not be relevant to those from cultures in which pointing is rarely used because it is considered rude. Another item that asks about a child’s eye contact may not be valued by those who consider children making eye contact with adults as rude, threatening, or disrespectful. The meaning CLD parents attribute to autistic symptoms can differ greatly (Dumont-Mathieu & Fein, 2005; Zhang, Wheeler, & Richey, 2006), and failure of CLD parents to identify these behaviors as problems may delay or otherwise affect the identification of the child as at risk of having ASD. Similarly, many instruments include items that require caution during administration and interpretation. Along with items regarding pointing and eye contact, evaluation teams should consider cultural differences in the use of sarcasm, seeking attention from adults, use of physical touch, use of voice intonation and inflection, control of the direction and length of conversations, use of personal space, and use of gestures, among other culturally based communicative interactions. Teams are encouraged to probe these culturally based differences to differentiate between cultural expectations and ASD symptoms. However, if the child has never observed parents pointing at an object to express interest, it is not likely that pointing will be in the child’s repertoire, regardless of whether an ASD exists or not. In such cases, evaluation teams need to conduct a thorough examination across many scenarios. Role of the SLP Speech-language pathologists make critical contributions to a multidisciplinary team to ensure that all students with ASDs receive culturally competent services. As ASHA states, “SLPs have the expertise to distinguish a language disorder from ’something else.’ That ’something else’ might include cultural and linguistic differences, socioeconomic factors, lack of adequate prior instruction, and the process of acquiring the dialect of English used in the schools” (ASHA, 2010, p. 2). As professionals in an increasingly diverse society, we must be engaged in culturally competent practices to assess CLD students with ASDs effectively. School teams should become more aware of how cultural variances influence verbal and nonverbal communication, how evaluation tools should be selected and/or adapted, how culturally based nonverbal behavior affects ASD characteristics, and how to acquire resources to enhance the effective assessment of and service to CLD students with ASDs (ASHA, 2004; 2006). Autism and the Role of SLPs: ASHA Documents Offer Guidance Family members play a critical role in the evaluation process for children with autism by supplementing information collected through informal and formal measures. ASHA highlights this role in a major principle of autism evaluation, which states that “speech-language pathologists should form partnerships with families of individuals with ASD in assessment and intervention, while incorporating family preferences, honoring cultural differences, and respecting the challenges associated with limited resources.” This statement is included in Principles for Speech-Language Pathologists in Diagnosis, Assessment, and Treatment of Autism Spectrum Disorders Across the Life Span [Technical Report], one of four ASHA documents developed by ASHA’s Committee on Autism Spectrum Disorders. The document also states that “a commitment to effective service delivery for individuals with ASD requires that speech-language pathologists work collaboratively with families in assessment and intervention, as well as in determining agendas for advocacy and research. In true partnerships, speech-language pathologists will place a high value on seeking and respecting family views, in recognizing the transactional nature of the disorder when evaluating family interactions and relationships, and in individualizing services to the needs and desires of the family (Marcus, Kunce, & Schopler, 2005).” The document also asserts that family beliefs, values, and resources will vary and that family systems are dynamic, with family interactions and needs changing over time. A companion document, Guidelines for Speech-Language Pathologists in Diagnosis, Assessment, and Treatment of Autism Spectrum Disorders Across the Life Span, discusses the variability with which children of culturally and linguistically diverse families are either over- or under-identified with autism. Noting that the core deficits of autism are based on language and social communication skills, the guidelines recommend careful consideration during assessment: “Clinicians and educators need to determine which different strategies are effective with students/clients presenting varying developmental levels; social, linguistic, and cultural backgrounds; learning styles; behavior repertoires; and communication needs,” while also considering family resources and cultural values. The technical report and guidelines are accompanied by the Roles and Responsibilities of Speech-Language Pathologists in Diagnosis, Assessment, and Treatment of Autism Spectrum Disorders Across the Life Span [Position Statement] and Knowledge and Skills Needed by Speech-Language Pathologists for Diagnosis, Assessment, and Treatment of Autism Spectrum Disorders Across the Life Span. The four documents are available at ASHA’s website. —Ann-Mari Pierotti, MS, CCC-SLP, associate director, clinical issues in speech-language pathology Compiled by Tina Taylor Dyches, EdD, Associate Professor, Brigham Young University Comprehensive Websites Autism Online is dedicated to the linking families of children with autism with support, education, resources, and products in their own language and includes information in at least 20 languages, from Arabic to Urdu. Autism Society of America hosts a comprehensive and informative website which presents information in Spanish. The Bilingual Autism Resource Guide (Guia Bilingue de Recursos Sobre Autismo) is a comprehensive list of resources in both English and Spanish. Centers for Disease Control and Prevention Exploring Autism (in Spanish: Explorando el Autismo) and in French: Explorer l’Autisme) The National Institutes of Health website has basic information about ASD in English and Spanish. The National Dissemination Center for Children with Disabilities (NICHY) website includes basic information regarding autism in Spanish (El Autismo/PDD) Selected Books in Languages Other than English Asperger’s Syndrome: A Guide for Parents and Professionals (Spanish: El Sindrome de Asperger: Una Guia para la Familia (Guia Para Padres) by Tony Attwood. Asperger’s...What Does It Mean to Me? A Manual Dedicated to Helping Children and Youth with Asperger’s or High-Functioning Autism.(Spanish – Asperger...Que Significa Para Mi?: Un Manual Dedicado A Ayudar A Niños y Jovenes Con Asperger O Autismo de Alto Funcionamiento) by Catherine Faherty, Karen Sicoli, R Wayne Gilpin, Karen L. Simmons Atravesando Las Puertas Del Autismo: Una Historia De Esperanza Y Recuperacion by Temple Grandin and Margaret M. Scariano Autism and Asperger Syndrome (Spanish: Autismo y sindrome de Asperger) by Simon Baron-Cohen and Sandra Chaparro Autism: Explaining the Enigma (Spanish: Autismo: Hacia Una Explicacion Del Enigma) by Uta Frith The Autism Handbook (Spanish: El Manual del Autismo: Información Fácil de Asimilar, Visión, Perspectivas y Estudios de Casos de un Maestro de Educación Especial) by Jack E. George Autism – Hope Through Behavioral Therapy (Turkish: Otizm: Umudumuz: Davranisci tedavi) by Ayda Halker Autism: An Introduction to Psychological Theory (Spanish: Introduccion Al Autismo) by Francesca Happe Autism Spectrum Disorders from A to Z (Spanish – Los Trastornos del Espectro de Autismo de la A a la Z) by Emily Doyle Iland & Barbara T. Doyle. The Autistic Child (Spanish: El Nio Autista) by O. Ivar Lovaas Children with Autism: A Parents’ Guide (Spanish – Niños autistas: Guia Para Padres, Terapeutas y Educadores) by Michael D. Powers Engaging Autism: Helping Children Relate, Communicate and Think with the DIR Floortime Approach (Spanish: Comprender el Autism) by Stanley Greenspan and Serena Wieder Introducción Al Enfoque ABA En Autismo y Retraso de Desarrollo. Un Manual Para Padres y Educadores by Claudio Trivisonno The Picture Exchange Communication System (PECS) Training Manual (French: and Spanish – Libro de Entrenamiento en el Sistema de Intercambio de Imágenes By/por Lori A. Frost & Andrew Bondy. Practical Solutions to Everyday Challenges for Children with Asperger Syndrome (Spanish: Soluciones Prácticas para Problemas Corrientes de Niños con Síndrome de Asperger) by Haley Morgan Myles and Jeanette McAfee. Siblings of Children with Autism: A Guide for Families (Spanish – Hermanos de Ninos Autistas) by Sandra Harris. There’s a Boy in Here. (Spanish – Hay un Chico Aquí Dentro) by Judy Barron and Sean Barron Thinking in Pictures (Spanish – Atravesando Las Puertas Del Autismo: Una Historia De Esperanza Y Recuperación) by Temple Grandin & Margaret M. Scariano Visual Strategies for Improving Communication (Spanish – Estrategias Visuales Para Mejorar La Communicacion and Arabic) by Linda Hodgdon. Selected Book Chapters Duran, E. (2006). Teaching adolescent students with autism and other spectrum disorders. In Duran, E., (Ed.), Teaching English Learners in Inclusive Classrooms. (pp. 149–167). Springfield, IL: Charles C. Thomas. Dyches, T. T., Wilder, L. K., Algozzine, B., & Obiakor, F. E. (2006). Working with multicultural learners with autism. In F. E. Obiakor, (Ed.). Multicultural Special Education. (pp. 126–139). Columbus, OH: Pearson. Dyches, T. T., Wilder, L., K., & Obiakor, F. (2001). Autism: Multicultural perspectives. In T. Wehlberg, F. Obiakor, & S. Burkhardt (Eds.), Advances in Special Education, Vol. 14: Autism Spectrum Disorders: Educational and Clinical Interventions. Amsterdam: Elsevier Science, Ltd. Roseberry-McKibbin, C. (2007). Language in children with developmental disabilties. In C. Roseberry-McKibbin, Language Disorders in Children: A Multicultural and Case Perspective. Boston: Pearson. Selected Peer-Reviewed Articles Assessment & Diagnosis Begeer, S., El Bouk, S., Boussaid, W., Terwogt, M. M., & Koot, H. M. (2009). Underdiagnosis and referral bias of autism in ethnic minorities. Journal of Autism and Developmental Disorders, 39, 142–148. Bolte, S., & Poustka, F. (2004). The German form of the Autism Diagnostic Observation Schedule (ADIOS): First results on reliability and validity. Zeitschrift fur Kinder und Jugendpsychiatrie und Psychotherapie, 32(1), 45–50. Chung, S. Y., Luk, S. L., & Lee, P. W. H. (1990). A follow-up study of infantile autism in Hong Kong. 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A., Beatson, J., Bitner, B., Broder, C., & Ducker, A. (2003). Interdisciplinary assessment of young children with autism spectrum disorder. Language, Speech, and Hearing Services in Schools, 34, 194–202. Wakabayashi, A., Baron-Cohen, S., Uchiyama, T., Yoshida, Y., Tojo, Y., Kuroda, M., et. al. (2007). The Autism-Spectrum Quotient (AQ) children’s version in Japan: A cross-cultural comparison. Journal of Autism and Developmental Disorders, 37, 491–500. Zhang. J., Wheeler, J. J., & Richey, D. (2006). Cultural validity assessment instruments for children with autism from a Chinese cultural perspective. International Journal of Special Education, 21(1), 109–113. Education & Treatment Seung, H., Siddiqi, S., & Elder, J. H. (2006). Intervention outcomes of a bilingual child with autism. Journal of Medical Speech-Language Pathology, 14(1), 53–63. Wilder, L. K., Dyches, T. T., Obiakor, F. E., & Algozzine, B. (2004). Multicultural perspectives on teaching students with autism. Focus on Autism and Other Developmental Disabilities 19, 105–113. Won, J., Krajicek, M., & Lee, H. (2004). Culturally and linguistically competent care of a Korean-American child with autism. Illness, Crisis, and Loss, 12(2), 139–154. Zionts, L. T., & Zionts, P. (2003). Multicultural aspects in the education of children and youth with autism and other developmental disabilities: Introduction to the special issue. Focus on Autism and Other Developmental Disabilities, 18(1), 2–3. Family Issues Lin, C., Tsai, Y., & Chang, H. (2008). Coping mechanisms of parents of children recently diagnosed with autism in Taiwan: A qualitative study. Journal of Clinical Nursing, 17, 2733–2740. Magaña, S., & Smith, M. J. (2006). Psycho