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The Resistance, Persistence and Resilience of Black Families Raising Children with Autism

by Elizabeth Drame (Author) Tara Adams (Author) Veronica Nolden (Author) Judy Nardi (Author)
©2020 Textbook XIV, 212 Pages

Summary

The Resistance, Persistence and Resilience of Black Families Raising Children with Autism presents nuanced perspectives in the form of counternarratives of what Black families who have children with autism experience at the intersection of race, class, disability and gender. It intentionally centers the expertise of Black parents, challenging what is considered knowledge, whose knowledge counts, and how knowledge can be co-generated for learning, sharing and advocacy. The book speaks directly to Black parents on the autism journey. To right systemic racial inequities and to cultivate culturally responsive practices, it is critical for practitioners and professionals to understand what is known about Black families’ experiences with autism in general and how these experiences differ because of our intersecting identities. University faculty and students in programs involving medicine, speech and language pathology, occupational therapy, nursing, political science, school psychology, teaching, special education and leadership can benefit from the wisdom offered by these parents. This text is perfect for several courses, including those in departments of anthropology, women and gender studies, health sciences, psychology, special education, teacher education and administrative leadership. In addition, given the uniquely Black perspective presented in the text, this text is relevant to other fields, including ethnic studies, cultural studies, urban studies and African American studies. It is relevant to individuals who wish to better understand how issues of race and intra-racial differences shape lived experiences with disability in American society.

Table Of Contents

  • Cover
  • Title
  • Copyright
  • About the author
  • About the book
  • This eBook can be cited
  • Table of Contents
  • Acknowledgments
  • Abbreviations
  • Chapter One Emerging from the Shadows
  • Chapter Two Beginning the Autism Journey
  • Chapter Three Why You Keep Holding on to the Sauce!? Navigating the Gatekeepers
  • Chapter Four Schooling or Being Schooled
  • Chapter Five You Might Have a Master’s Degree, But I Have a PhD in My Child!
  • Chapter Six The Support You Are Given Versus the Support You Create
  • Chapter Seven Get Your Eyes Off My Child!
  • Chapter Eight Moving Toward the Future: The Autism Village Imagined
  • Appendix
  • Index

cover

About the author

Elizabeth R. Drame is a professor in Teaching and Learning at the University of Wisconsin-Milwaukee. She prepares special educators and coordinates the Autism Spectrum Disorders Certifi cate Program. She is a co-editor of Black Participatory Research: Power, Identity and the Struggle for Justice in Education. Drame received her Ph.D. in Learning Disabilities from Northwestern University.

Tara Adams earned a Data Entry certifi cate at Milwaukee Area Technical College. She works in disability advocacy and served as a family advocate for the University of Wisconsin-Madison Wisconsin Promise Program, helping families and youth receiving Social Security Supplemental Income to improve post-secondary outcomes.

Veronica R. Nolden served as a special education paraprofessional, autism advocate and volunteer at a local hospital. She is a cofounder of the Milwaukee Urban Autism Summit and serves as a speaker on disability related topics with a specifi c focus on autism.

Judy M. Nardi is currently a Senior Pharmacy Technician. She holds a bachelor’s degree in Psychology with a minor in African American Literature from Loyola University in Chicago, IL.

About the book

The Resistance, Persistence and Resilience of Black Families Raising Children with Autism presents nuanced perspectives in the form of counternarratives of what Black families who have children with autism experience at the intersection of race, class, disability and gender. It intentionally centers the expertise of Black parents, challenging what is considered knowledge, whose knowledge counts, and how knowledge can be co-generated for learning, sharing and advocacy. The book speaks directly to Black parents on the autism journey. To right systemic racial inequities and to cultivate culturally responsive practices, it is critical for practitioners and professionals to understand what is known about Black families’ experiences with autism in general and how these experiences diff er because of our intersecting identities. University faculty and students in programs involving medicine, speech and language pathology, occupational therapy, nursing, political science, school psychology, teaching, special education and leadership can benefi t from the wisdom off ered by these parents. This text is perfect for several courses, including those in departments of anthropology, women and gender studies, health sciences, psychology, special education, teacher education and administrative leadership. In addition, given the uniquely Black perspective presented in the text, this text is relevant to other fi elds, including ethnic studies, cultural studies, urban studies and African American studies. It is relevant to individuals who wish to better understand how issues of race and intra-racial diff erences shape lived experiences with disability in American society.

This eBook can be cited

This edition of the eBook can be cited. To enable this we have marked the start and end of a page. In cases where a word straddles a page break, the marker is placed inside the word at exactly the same position as in the physical book. This means that occasionally a word might be bifurcated by this marker.

←viii | ix→

 

Acknowledgments

I am truly grateful and humbled by the courage, openness, willingness to learn new things and the never-ending commitment of my mom co-authors and sisters, Veronica, Tara and Judy. I am proud to be on this journey with you. You have pushed me to learn, to question, and to never give up. I will treasure our dining table conversations and all the good food we enjoyed together. I know this is only the beginning! Thank you to all the families who participated in this book. I am grateful for your honesty and your willingness to share your stories. I hope we have done them justice. To all racial justice warriors, I hope this book adds to your arsenal in the fight for equity for Black children with autism. I thank my husband, Djily. You are my rock. You support and love me in all my states. Thank you for your smiles, your laughter and your belief in everything I choose to pursue. I love you. Thank you to my children, Souleymane and Khadijah. Everything I do is for you. Thank you for loving me in all my imperfection. I love you. Thank you to my mother, Denise Duval. I hope to be as strong as she is one day. Thank you to my twin sister, Dominique, for challenging me, making me laugh and giving me unconditional love. Elizabeth R. Drame

Thank you, Lord, because I never could have made it without you. Thanks to my husband, my man, Reggie, for your love, faith, trust and self-sacrificing accommodations you made on this journey. To my first born, Reggie Jr., as I’ve always told you, I could not have asked or prayed for a better son or big brother than you. ←ix | x→To Kobe—as our saying goes—“it’s all because of you,” that I am a co-author of a book. You have taught me patience and nonjudgment. Through you, I have found my passion. To my immediate family and those who I hold near and dear, I thank you for your support. Amid my frustration, crying and distress, which some of you may not have understood, your “tough love” contributed to a different way of thinking. I thank all of you who contributed to our journey in various capacities. Lastly, but most definitely not least, infinite kudos to my co-authors and sistas of another mother, Veronica Nolden, Dr. Elizabeth Drame and Judy Nardi. Veronica, as Kobe’s educational advocate, our professional relationship turned into a lifelong friendship. You taught me advocacy skills and volunteered me for positions that I didn’t believe I was ready for. Dr. Drame, from our first meeting at an autism workshop, you saw much potential in me that I didn’t see in myself. You broadened my horizons, taking me from speaking on parent panels, to being interviewed for a Black Nouveau TV broadcast for autism awareness, to speaking to preservice special education teachers, and finally presenting at an international disability conference in Cape Town, South Africa. Judy, your expertise and “down to earth, tell it like it is” mentality has definitely been inspirational. I’m simply grateful. Tara Adams

I want to thank God for blessing me with the opportunity and the strength to pursue my dream of becoming a published author, and for the many people He has put in my path like my friends, my sisters, Elizabeth, Tara, and Judy. I want to thank my parents, Brenda and James (Ed), and my sister, Stephanie, for always supporting and believing in me and in all that I dream. Finally, I want to thank my children, Brianca and Branden, for always keeping me motivated and my husband, Antonio (Tony), for working so hard to support our family and being so hands-on with the children to allow me to work on this book. Veronica R. Nolden

Details

Pages
XIV, 212
Year
2020
ISBN (PDF)
9781433174209
ISBN (ePUB)
9781433174216
ISBN (MOBI)
9781433174223
ISBN (Softcover)
9781433174186
ISBN (Hardcover)
9781433174193
DOI
10.3726/b16173
Language
English
Publication date
2020 (April)
Published
New York, Bern, Berlin, Bruxelles, Oxford, Wien, 2020. XIV, 212 pp., 1 b/w ill., 2 tables

Biographical notes

Elizabeth Drame (Author) Tara Adams (Author) Veronica Nolden (Author) Judy Nardi (Author)

Elizabeth R. Drame is a professor in Teaching and Learning at the University of Wisconsin-Milwaukee. She prepares special educators and coordinates the Autism Spectrum Disorders Certificate Program. She is a co-editor of Black Participatory Research: Power, Identity and the Struggle for Justice in Education. Drame received her Ph.D. in Learning Disabilities from Northwestern University. Tara Adams earned a Data Entry certificate at Milwaukee Area Technical College. She works in disability advocacy and served as a family advocate for the University of Wisconsin-Madison Wisconsin Promise Program, helping families and youth receiving Social Security Supplemental Income to improve post-secondary outcomes. Veronica R. Nolden served as a special education paraprofessional, autism advocate and volunteer at a local hospital. She is a cofounder of the Milwaukee Urban Autism Summit and serves as a speaker on disability related topics with a specific focus on autism. Judy M. Nardi is currently a Senior Pharmacy Technician. She holds a bachelor’s degree in Psychology with a minor in African American Literature from Loyola University in Chicago, IL.

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226 pages