I Love You Just The Way You Are: An Autoethnography About Disability, Belonging, Acceptance and Inclusion

Research with the perspectives and experiences of autistic participants who have significant communication barriers is limited. My son Ben is an autistic nonverbal person who has been systematically excluded from mainstream activities including education. The aim of this auto-ethnographical study is to explore how Ben has either benefitted from or been excluded from mainstream activities, programs, and services due to the nature of systemic stigma, institutional attitudes and biases, and the limits of the laws intended to support people with disabilities. As a mother of a nonverbal autistic, I am in a unique position to share our lived experiences seeking supports, accommodations, and access to entitlement programs including a public education under the Individuals with Disabilities Education Act (IDEA, 1990), medical care, and the Americans with Disabilities Act (ADA, 1990) sanctioned higher education accommodations. It is a balancing act of demonstrating need, competencies, and the ability to “fit in” while demanding supports. In three chapters, the voice of the researcher and the inclusive participant are presented in a narrative format. The first chapter documents Ben’s struggle to receive appropriate support systems under the Americans with Disabilities Act (1990) at a university. The second chapter describes Ben’s abrupt dismissal from a private therapeutic day school and the local public school district’s failure to offer free and appropriate public education in the least restrictive environment. The third chapter is a more personal story about efforts to secure my adult child’s access to programs and services while in the midst of confronting my own abilities to navigate complex medical bureaucracies. This research collected data of our experiences living nonverbal in a highly communicative world and provides insights into the ways in which systems impact the well-being of nonverbal people with autism.