Amplifying Autistic perspectives: Learning from and with Autistic adults to support their autonomy

• Author / Creator

  Ryan, Jacalyn G.

• Self-determination enhances a person’s quality of life and is a fundamental human right. Yet, Autistic individuals experience fewer opportunities for self-determination than their non-autistic peers, including peers with other developmental disabilities. This is often due to professionals exerting external control over Autistic individuals, especially those with co-occurring intellectual disabilities. However, some professionals are striving to support self-determination for Autistic people. While research about the lived experiences of Autistic people is increasing research on the lived experience of Autistic people with intellectual disabilities (ID) remains limited. Intellectual disability should not affect an Autistic young adult’s ability to be self-determined but will affect the level of support the person needs. Autistic people and autism researchers have both proposed that including Autistics in research as collaborators or co-researchers can enhance the relevance of autism research, support the self-determination of Autistic individuals, and improve their quality of life. According to Self-Determination Theory, autonomy is one of three basic psychological needs that must be met for someone to experience self-determination.
  This work is comprised of five chapters, including an introductory chapter, three manuscripts that represented independent research with integrated learnings to support self-determination, and a discussion/conclusion chapter. Each project in the three manuscripts was conducted using a community based participatory research (CBPR) approach. A CBPR approach with Autistic people enhances self-determination by ensuring that the research is relevant to the Autistic community, attending to social inequalities, and by increasing the knowledge and skills of the Autistic partners. The first manuscript describes the development of Research 101, Effective Collaborators to enhance the ability of Autistic people to participate in research as co-researchers. The second manuscript investigates what autonomy means to Autistic adults with ID and how they want to be supported to be autonomous. The third manuscript explores how staff at an autism service provider support autonomy for the Autistic participants with ID and what knowledge, skills, and abilities they and the Autistic participants need to promote greater autonomy.
  This dissertation contributes new knowledge on supporting Autistic people, including those with ID, to be more self-determined. This work has implications for researchers, professionals, clinicians, disability support workers, and other autism practitioners. This work contributes to methodological and ethical discussions about conducting research with Autistic adults with ID.

• Subjects / Keywords

  • autism
  • autonomy
  • self-determination
  • intellectual disability
  • Autistic
  • participatory research

• Graduation date

  Fall 2023

• Type of Item

  Thesis

• Degree

  Doctor of Philosophy

• DOI

  https://doi.org/10.7939/r3-djv5-m326

• License

  This thesis is made available by the University of Alberta Libraries with permission of the copyright owner solely for non-commercial purposes. This thesis, or any portion thereof, may not otherwise be copied or reproduced without the written consent of the copyright owner, except to the extent permitted by Canadian copyright law.