Inclusive Societal Understanding Utilizing Decolonizing Leadership

Dissertation Title: Shifting Paradigms: Indigenous Perspectives on Autism and the Path to Inclusive Societal Understanding Utilizing a Decolonizing and Indigenous Leadership Framework

Problem Statement:

According to research, the pervasive negative stereotypes surrounding individuals with hidden disabilities, particularly autism, contribute to significant societal and mental health struggles within various modern or Western cultures, perpetuating daily challenges and impeding the well-being and inclusion of autistic individuals (Murthi et al., 2023). Notably, certain Indigenous tribes, including the Māori, Aboriginal, and Torres Strait Islanders, offer a more positive perspective, viewing autism as a neurological difference and emphasizing the unique strengths of autistic individuals (Lilley et al., 2020; Tupou et al., 2021). However, a notable gap exists in exploring historical and current cultural foundations and research on Indigenous perspectives within the United States. This gap represents a missed opportunity to understand and utilize alternative, more positive perspectives on autism.

Research Questions:

1. How do historical and contemporary perspectives within various Oklahoma Indigenous tribal populations shape the understanding and conceptualization of autism and related symptomatology?

2. What specific cultural practices, beliefs, and values within these Indigenous communities contribute to more positive perceptions of autism that are not deficit-focused?

3. How can these insights be leveraged to challenge harmful negative stereotypes and improve societal perceptions in broader contexts?

Research Design

How Questions will be Answered:

The study will employ Participatory Action Research (PAR) and collaborate closely with Indigenous and autistic community members, ensuring that their voices, knowledge, and experiences are central to the research process. Various decolonial and Indigenous methodologies, such as storytelling, Storywork, narrative inquiry, sharing circles, visiting, and ceremonies, will be utilized. With relationship-building as the central epistemological stance, community engagement is imperative. Therefore, I will establish partnerships with tribal leaders and community members, including elders, parents, and individuals with disabilities. Participating members will be encouraged to share their stories, beliefs, and practices related to autism and disabilities, and other narratives and historical accounts on these topics will also be recorded. Thematic analysis will be employed to identify patterns and themes related to historical and contemporary understandings of autism and disabilities. This study is grounded in a social constructivist worldview, emphasizing the importance of culture and context in understanding human interactions. Indigenous ways of knowing and the significance of relationships are central concepts as I further explore decolonizing leadership methodologies.

Type of Design:

For this research, I plan to employ qualitative phenomenographic and narrative inquiry methodologies. I have selected phenomenography to explore the diverse ways in which Indigenous populations in Oklahoma have historically and contemporaneously perceived, experienced, and conceptualized autism and other disabilities with similar symptomatology. Narrative inquiry has been chosen as it aligns with decolonial methodologies, enabling a holistic and ethical examination of these Indigenous perceptions, experiences, and concepts.

Indigenous and Decolonial Methodologies:

Decolonial methodologies, such as Critical Indigenous Research Methodologies (CIRM), which are rooted in relationships, responsibility, respect, reciprocity, and accountability, will be utilized to ensure that all information gathered serves the community (Brayboy et al., 2012). Various Indigenous methods, including storytelling, Storywork, narrative inquiry, sharing circles, visiting, and ceremonies, will be incorporated.

The conversational method will be adopted as it aligns with an Indigenous worldview that values orality as a means of transmitting knowledge. This approach honors relational dynamics and supports the collectivist traditions inherent in Indigenous communities (Kovach, 2020). Utilizing storytelling or storying, this method is congruent with the relational dynamic of an Indigenous paradigm (Wilson, 2008). The conversational method within an Indigenous framework invokes several characteristics: it is linked to tribal epistemology and situated within an Indigenous paradigm; it is relational; it is purposeful and decolonizing; it involves specific protocols as determined by relational epistemology; it allows for informality and flexibility; it is collaborative and dialogic; and it is reflexive (Kovach, 2020). By employing this method, the research will be culturally respectful, inclusive, and aligned with Indigenous values and ways of knowing.

Participants

Participants Inclusion Criteria:

● Be an adult aged 18 or older who is a member of one of the 38 federally recognized tribes of Oklahoma.

● Be a tribal elder, historian, parent of an autistic child, or an autistic individual who possesses knowledge about autism or Indigenous perspectives on the treatment of individuals who were considered “different” in some capacity.

Tribes Include (Oklahoma Indian Tribes and Languages, 2020): 

Absentee Shawnee Tribe

Miami Tribe of Oklahoma

Alabama-Quassarte Tribal Town

Modoc Nation

Apache Tribe of Oklahoma

Muscogee Nation

Caddo Nation

Osage Nation

Cherokee Nation

Otoe-Missouria Tribe

Cheyenne and Arapaho Tribes

Ottawa Tribe of Oklahoma

Chickasaw Nation

Pawnee Nation of Oklahoma

Choctaw Nation

Peoria Tribe of Indians of Oklahoma

Citizen Potawatomi Nation *(Authors tribe)

Ponca Tribe of Oklahoma

Comanche Nation

Quapaw Nation

Delaware Nation

Sac and Fox Nation

Delaware Tribe of Indians

Seminole Nation

Eastern Shawnee Tribe of Oklahoma

Seneca-Cayuga Nation

Fort Sill Apache Tribe

Shawnee Tribe

Iowa Tribe of Oklahoma

Thlopthlocco Tribal Town

Kaw Nation

Tonkawa Tribe

Kialegee Tribal Town

United Keetoowah Band of Cherokee Indians 

Kickapoo Tribe of Oklahoma

Wichita and Affiliated Tribes

Kiowa TribeWyandotte Nation

Proposed Contributions

Significance of this study:

This research has significant implications for reshaping societal perceptions of autism by emphasizing the importance of cultural relevance and embracing individual strengths, challenging prevailing deficit models prevalent in Western societies. Through an exploration of Indigenous perspectives on autism and advocacy for strength-based approaches, the study aims to foster greater inclusivity and well-being for autistic individuals, particularly within Indigenous tribal populations. Furthermore, it lays the groundwork for future research to develop tailored strategies that cater to the cultural nuances of Indigenous communities. By incorporating Indigenous perspectives and employing participatory action research methodologies, this study aims to amplify the voices of autistic individuals and Indigenous communities, fostering collaborative efforts in developing culturally relevant interventions and assessments. Through the active involvement of autistic and Indigenous stakeholders in the research process, this study contributes to broader discussions on autism acceptance and inclusion, facilitating the development of innovative, inclusive practices across diverse cultural contexts. Overall, it highlights the significance of cultural relevance in understanding autism and advocates for more inclusive approaches to support autistic individuals, guided by the principles of participatory action research.

Purpose of this study:

The objective of this phenomenographic and narrative study is to investigate and elucidate the perceptions, experiences, and conceptualizations of autism and other disabilities with overlapping symptomatology within Oklahoma's Indigenous tribal populations. Oklahoma's relevance in this study stems from its status as home to 38 federally recognized Native American tribes (Indian Country, 2015), among them the Citizen Band Potawatomi tribe, of which the author is a member. Additionally, Oklahoma boasts the third largest number of tribes in the United States, following Alaska and California, and holds the second-highest Native American population percentage, standing at 16% after Alaska (Rezal, 2021). Subsequent research can expand upon the findings of this study to encompass a broader range of Native American tribes. By examining both historical and contemporary perspectives, this study aims to highlight the strengths of autistic individuals. It seeks to provide valuable insights to positively shift societal perceptions, challenge stereotypes, and foster an inclusive, empowering environment, drawing upon the wisdom and positive outlook inherent in Indigenous cultures.

Leadership Framework

Decolonizing and Indigenous Leadership

Just as various races and cultures, particularly Indigenous populations worldwide, have been systematically marginalized and devalued by colonial structures and ideologies, individuals with disabilities, including autistic people, continue to experience dehumanization and stigmatization. This pervasive deficit-based perspective sustains discriminatory attitudes and causes profound, lasting harm to autistic communities, undermining their dignity, well-being, and rights to self-determination. To dismantle these colonial frameworks, it is essential to rethink and reshape the narrative around autism to be more inclusive, culturally sensitive, and respectful of neurodivergent perspectives. Incorporating an Indigenous framework offers a valuable approach to addressing the marginalization of autistic individuals by providing alternative ways of knowing, being, and relating that challenge colonial and deficit-based narratives. This can be achieved through the following approaches:

Holistic Understanding: Indigenous frameworks emphasize a holistic view of health, integrating physical, mental, emotional, and spiritual dimensions. Applying this perspective to autism encourages recognizing the whole person and their connections to community and environment, beyond merely focusing on diagnosis and symptom management.

Relationality and Community: Indigenous cultures prioritize relationships and community interconnectedness. This perspective shifts the focus from individual deficits to the importance of communal support and the meaningful roles autistic individuals play within their communities.

Respect for Diversity: Indigenous worldviews celebrate diversity as a strength, viewing differences in abilities as natural variations rather than abnormalities. This aligns with the neurodiversity paradigm, which values neurological differences, such as autism, as integral aspects of human diversity to be respected and celebrated.

Cultural Sensitivity and Context: An Indigenous framework emphasizes the significance of cultural context and sensitivity, acknowledging that experiences of disability, including autism, are influenced by cultural beliefs and norms. This approach challenges Western-centric models and promotes culturally relevant understandings and practices.

Decolonization and Self-Determination: Indigenous frameworks advocate for decolonization, rejecting deficit-based views imposed by colonial structures. For autism, this means empowering autistic individuals to define their identities and experiences and advocating for their rights to autonomy and self-determination.

Interconnectedness with Nature: Many Indigenous cultures have a profound respect for nature and see humans as part of a larger ecological system. This perspective can support the well-being of autistic individuals by fostering environments that align with natural rhythms and sensory experiences.

Reclaiming Language and Narratives: Indigenous frameworks highlight the importance of using empowering language that reflects dignity and respect. For autism, this involves moving away from stigmatizing language towards terminology that honors the strengths and experiences of autistic individuals.

Ethical Considerations

The following outlines how ethical considerations will be met, particularly concerning issues of consent, cultural sensitivity, potential impact, recruitment, and genuine collaboration within the PAR approach.

1. Consent: Clear, honest explanations of the study’s purpose, methods, potential impacts, and benefits will be provided to all participants. This transparency will include details on their rights, such as the ability to withdraw from the study at any point without any negative repercussions. Consent processes will be tailored to respect cultural norms and practices. This will include using oral consent, as it aligns with the tribal traditions, alongside written consent. 

2. Cultural Sensitivity: The research will employ decolonial methodologies that honor Indigenous ways of knowing, such as storytelling and sharing circles. This approach ensures that the research process is culturally relevant and respectful. Research questions, methods, and interpretations will be co-developed with community members to reflect their priorities and perspectives, ensuring the research is grounded in the community’s cultural context. Regular consultations with tribal leaders, elders, and other community members will be conducted to ensure the research respects and aligns with cultural values and norms.

3. Potential Impact on Indigenous Communities: The research will be designed to provide tangible benefits to the tribal community, such as informing local practices or policies and offering resources or support identified as needed by the community. Findings will be shared with the community in accessible formats, and discussions will be held to explore how the results can be used to benefit each tribal community. Continuous engagement and feedback loops with the community will be maintained to identify and mitigate any potential negative impacts arising from the research.

Recruitment of participants will begin by establishing strong partnerships with tribal leaders and key community members, who can help identify and invite potential participants. Efforts will be made to include a diverse range of participants, such as elders, historians, parents, and autistic individuals, ensuring that various perspectives are represented. 

Ensuring genuine collaboration in the PAR approach will involve utilizing an Indigenous research mentor to help facilitate the process. This mentor will provide guidance on cultural protocols, assist in building relationships, and ensure that the research is conducted in a manner that is respectful and aligned with community values. As community engagement is imperative, with relationship-building as the central epistemological stance, collaborative decision-making will be shared with community members, ensuring their input and perspectives guide the research process. Furthermore, participating community members will be encouraged to share their stories, beliefs, and practices related to autism, and other narratives and historical accounts on these topics will also be recorded. Thematic analysis will be employed to identify patterns and themes related to historical and contemporary understandings of autism and disabilities.

Limitations

The study's findings cannot be generalized to all Indigenous individuals due to the small and purposive nature of the sample, which limits their broader applicability. The ambitious goal of securing one participant per tribe may not be achievable, leading to a smaller sample size than desired, which could impact the depth and breadth of the study's insights. The success of the sampling technique heavily depends on the cooperation of tribal governments. If some tribes choose not to participate, this could affect the study's comprehensiveness. Despite the personable approach, the study might still result in few respondents, leading to non-response bias and potentially skewing the findings if certain groups are underrepresented. Additionally, as the first study of its kind with Indigenous peoples in the United States, there is a risk of confirmation bias, where the researcher might unintentionally overlook inconsistencies or contrary information.

References

Brayboy, B. M. J., Gough, H. R., Leonard, B., Roehl, R. F. II, & Solyom, J. A. (2012). Reclaiming scholarship: Critical Indigenous research methodologies. In S. D. Lapan, M. T. Quartaroli, & F. J. Riemer (Eds.), Qualitative research: An introduction to methods and designs (pp. 423–450). Jossey-Bass/Wiley.

Indian country. (2015, July 14). https://www.justice.gov/usao-ndok/indian-country

Kovach, M. (2020). Conversational method in Indigenous research. First Peoples Child & Family Review, 14(1), 123–136. https://doi.org/10.7202/1071291ar

Kovach, M. (2021). Indigenous methodologies: Characteristics, conversations, and contexts (Second edition). University of Toronto Press.

Lilley, R., Sedgwick, M., & Pellicano, E. (2020). Inclusion, acceptance, shame and isolation: Attitudes to autism in Aboriginal and Torres Strait Islander communities in Australia. Autism, 24(7), 1860–1873. https://doi.org/10.1177/1362361320928830

Murthi, K., Chen, Y.-L., Shore, S., & Patten, K. (2023). Strengths-based practice to enhance mental health for autistic people: A scoping review. The American Journal of Occupational Therapy, 77(2), 7702185060. https://doi.org/10.5014/ajot.2023.050074

Oklahoma Indian tribes and languages. (2020). https://www.native-languages.org/oklahoma.htm

Rezal, A. (2021, November 26). The states where the most Native Americans live. US News & World Report. https://www.usnews.com/news/best-states/articles/the-states-where-the-most-native-americans-live

Smith, L. T. (2022). Decolonizing methodologies: Research and Indigenous peoples (Third edition). Bloomsbury Academic.

Tachine, A. R., Bird, E. Y., & Cabrera, N. L. (2016). Sharing circles: An Indigenous methodological approach for researching with groups of Indigenous peoples. International Review of Qualitative Research, 9(3), 277–295. https://doi.org/10.1525/irqr.2016.9.3.277

Tupou, J., Curtis, S., Taare-Smith, D., Glasgow, A., & Waddington, H. (2021). Māori and autism: A scoping review. Autism, 25(7), 1844–1858. https://doi.org/10.1177/13623613211018649

Wilson, S. (2008). Research is ceremony: Indigenous research methods. Fernwood Publishing.

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