Qualitative Research on Autism in Special Education Settings

Introduction to Autism Language and Special Education Research

Autism spectrum disorders are diverse, as are the populations affected by them. Cultural diversity and additional factors such as socioeconomic class can complicate approaches to autism in special education programs. One of the most important issues when working in special education generally, and with children with autism specifically, is communication. Communication includes how to speak about autism, whether or how to label students, and which terms students and their parents prefer to use. Educators, special education teachers, and school administrators need to be aware of parent and student perceptions of different autism-related terms, and remain sensitive to their needs.

Study 1: Terminology Preferences in the UK Autism Community

In "Which Terms Should Be Used to Describe Autism? Perspectives from the UK Autism Community," Kenny, Hattersley, Molins, et al. (2015) address a research question related to preferences for how to refer to autism. The purpose of the research was to inform educators and administrators on best strategies for communication related to autism, and also to inform the media, healthcare workers, and the community at large.

The researchers used a mixed methods design, but separated the results of the qualitative component from the quantitative. After a review of literature focusing on different types of terminology — including disability-first versus person-first or identity-first language — the researchers set out to resolve the considerable differences in opinion over which nomenclature is more acceptable. The overall theoretical framework is related to identity theories, and the "relationship between language and the identity of autistic people" (Kenny, Hattersley, Molins, et al., 2015, p. 3). Identity is shaped by other people's perceptions and reactions, which in turn leads to the internalization of labels. It is therefore important to understand how labels are formed and what effect they have on children with autism. The ultimate goal of the research was to use qualitative and mixed methods to find out what people in the autism community feel about language, seeking input primarily from people with autism and their family members, but also from professionals who work with people with autism.

A convenience sample was used, including a method known as snowball sampling, which involves having an initial group of participants spread the word through their own online or in-person communities. The researchers received formal ethical approval from the Research Ethics Committee at their university. An online survey was used, which included a numerical component for the quantitative analysis as well as open-ended questions for the qualitative component. Over four thousand persons completed the survey. Of these, 233 autistic adults, 758 family members, and 340 professionals completed the qualitative component. The researchers based their qualitative data analysis on thematic groupings, using an inductive approach. They also offered "descriptive overviews of the key features of the semantic content of data within an essentialist framework" (Kenny, Hattersley, Molins, et al., 2015, p. 6). Transcripts were coded, and themes were further analyzed; these included "autism is not separate from the person," "disorder vs. difference," and "Asperger's vs. autism" (Kenny, Hattersley, Molins, et al., 2015, p. 7).

Using mixed methods allowed for a rich data set and the potential to minimize researcher bias when analyzing the qualitative component. The researchers also reduced bias by dividing results according to participant status — persons with autism, professionals, or family members. An abundance of quotes is provided for context, and the researchers draw conclusions that accurately reflect the nuanced responses. The research builds upon other studies demonstrating that the terminology used when referring to students with disabilities matters and has a bearing on identity, performance, and outcomes. For example, Ballard (2016) shows how important it is to use terms that are empowering to students and parents. Similarly, Back, Keys, McMahon, et al. (2016) found that improving the language used to refer to students with any type of disability promotes "a more positive disability identity" (p. 1).

Study 2: Kindergarten Transitions for Minority Students with ASD

One of the most important issues in special education is how to effectively work with the diverse range of students with autism. It is important to communicate effectively with students and parents while remaining aware of and sensitive to cultural differences that also impact perceptions, attitudes, and beliefs. Moreover, administrators and educators need to provide the most effective evidence-based practices to prepare all students on the autism spectrum for educational transitions.

In "Transition to Kindergarten for Children with Autism Spectrum Disorder," Starr, Martini, and Kuo (2014) use qualitative methods to explore complex research questions related to how educators can enhance the kindergarten transition among minority students with autism — an underserved population. This research aims to contribute to the body of knowledge on best practices when working with minority students with autism in early childhood education. Using a phenomenological framework, the researchers set out to explore the lived experiences of families from ethnically diverse backgrounds. The researchers also applied an ecological model to address the multicultural variables and contextual factors, specifically Bronfenbrenner's Ecological Systems Theory.

The qualitative research design used was a focus group study in which participants included kindergarten teachers, parents, early childhood resource teachers, and early intervention providers. The authors based their focus group structure on prior research showing the points of anxiety parents often report, as well as research on successful kindergarten transitions for diverse student populations. Culture has been shown to be a significant factor impacting perceptions of education and the transition to kindergarten. Research has also shown that minorities are underrepresented in special education and may often not receive the support services or resources needed to ensure children have successful kindergarten transitions (Morgan, Farkas, & Hillmeier, 2015). The researchers hypothesized that parents did experience some challenges unique to being an underrepresented minority group, and that certain experiences tended to be universal despite the diversity of the population. A total of six focus groups were conducted, and the researchers received approval from a formal ethics committee for each one. The focus groups were divided according to cohort — such as parent group and teacher group — which helped reduce researcher bias by ensuring that topics and questions remained relevant to each cohort. Focus groups were also conducted in the native languages of the identified populations.

Data analysis consisted of analyzing audio recordings using open coding, axial coding, and selective coding. The researchers then used an established method of deriving themes from the coding process. To further reduce bias and improve reliability and validity, each researcher analyzed the focus group data sets independently before compiling results. Overall, this focus group study was well designed, with minimal problems related to study design and reliability. Its primary strength is its contribution to the growing body of knowledge at the intersection of ethnicity and disability in special education.

References

Back, L. T., Keys, C. B., McMahon, S. D., & O'Neill, K. (2016). How we label students with disabilities: A framework of language use in an urban school district in the United States. Disability Studies Quarterly, 36(4).

Ballard, K. (2016). Children and disability: Special or included. Waikato Journal of Education, 10(1).

Creswell, J. (2013). Research design: Qualitative, quantitative, and mixed methods approaches (4th ed.). Thousand Oaks, CA: Sage Publications.

Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2015). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442–462. doi:10.1177/1362361315588200

Morgan, P. L., Farkas, G., Hillemeier, M. M., Mattison, R., Maczuga, S., Li, H., & Cook, M. (2015). Minorities are disproportionately underrepresented in special education: Longitudinal evidence across five disability conditions. Educational Researcher, 44(5), 278–292.

Starr, E. M., Martini, T. S., & Kuo, B. C. H. (2014). Transition to kindergarten for children with autism spectrum disorder. Focus on Autism and Other Developmental Disabilities, 31(2), 115–128. doi:10.1177/1088357614532497

Van Hees, V., Moyson, T., & Roeyers, H. (2014). Higher education experiences of students with autism spectrum disorder: Challenges, benefits and support needs. Journal of Autism and Developmental Disorders, 45(6), 1673–1688. doi:10.1007/s10803-014-2324-2

White, S. W., Elias, R., Capriola-Hall, N. N., Smith, I. C., Conner, C. M., Asselin, S. B., … & Mazefsky, C. A. (2017). Development of a college transition and support program for students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(10), 3072–3078.