"They think we don't have the knowledge" : the intersection of autism and race

Thesis (Ph. D.)--University of Rochester. Margaret Warner School of Education, Dept. of Teaching and Curriculum, 2012.The purpose of this study was to explore the experiences of African American mothers of children with an autism diagnosis as they negotiated an urban district special education system. Beginning with the question, "How do the dual oppressions of race and disability impact African American mothers of children with autism and their relationship with the schooling process," five mothers participated in both one to one and focus group interviews. With a feminist disability theoretical framework, exploring the intersection of race and disability as constructed and deconstructed through social positioning; institutional knowledge claims as privileged and non-innocent; and the critical race theory concepts of experiential knowledge and "contextual contours" of the lives and stories of those who are marginalized. Through a grounded theory analytic process, the concepts of microaggression and resistance were added, fitting well with the feminist disability theoretical frame. The study's findings led to conclusions addressing three major areas: 1) the mothers' difficulties in coping with autism; 2) the mothers' managing the power held by the institution of special education; and 3) how the mothers engaged in the dialectical relationship of resistance and agency. Oppression and resistance are often mentioned as a dialectical relationship. Patricia Hill Collins (2000) suggests "the shape of one influences that of the other" (p. 274). Understanding and negotiating the special education labyrinth, complicated by the intersecting oppressions of race and autism, led to differing levels of maternal agency. The mothers all focused their agency on having their children's needs (academic, behavioral, social, and safety) met. There appeared to be many barriers to the mothers' success with two major foci: 1) institutional structures, such as CSE meetings, evaluations, diagnoses and labeling, and 2) personal interactions that were often accompanied by microaggressive and sometimes overtly aggressive behaviors. Recommendations focused on the need for school personnel's increased knowledge of behaviors associated with autism, respect for and privileging of parents' knowledge of their children, and accompanying improved awareness of structural and personal microaggressions