Tara Adams (left) and her family.
“You might have a master’s degree, but I have a PhD in my child.”
That chapter introduction reflects the point of view of a new book about the specific experiences of Black families with a child on the autism spectrum.
“The Resistance, Persistence and Resilience of Black Families Raising Children with Autism,” published in May, is unique for an academic book because it is a collaboration that included a UWM education professor, Elizabeth Drame, and co-authors/investigators who are themselves Black parents with a child on the autism spectrum.
“We did that deliberately because we wanted to uplift the expertise of Black parents, by sharing their lived experiences, rather than the traditional approach of researchers telling other people’s stories said Drame. “We wanted to elevate their experiences as being just as socially valid and even more informative than the findings researchers might generate and interpret from traditional research activities like focus groups and surveys.” Black, participatory research which centers Black people’s knowledge is emancipatory and has the power to impact fields, such as education, psychology, and health sciences.
The book grew out of Drame’s relationship with Black mothers with children with autism in Milwaukee. Drame, who is the program coordinator for the Autism Spectrum Disorders certificate in the Department of Teaching and Learning, collaboratively organized the annual Milwaukee Urban Autism Summit for five years. The free summit is a partnership of community organizations and universities. The program was designed to bridge the knowledge and resources gap for Milwaukee families of children with autism, as well as to provide a venue for interchange and collective learning between families and professionals.
Through the summit and her other work, Drame had developed strong relationships with two co-author mothers – Tara Adams and Veronica Nolden– who are raising children on the autism spectrum.
When local journalist, Joanne Williams, invited them to take part in the show she hosts for PBS, Black Nouveau, to talk about their experiences, they were pleased to participate, but disappointed that several hours of interviews ended up being only a six and a half-minute segment on the program.
“The structure didn’t allow enough time for really telling their stories, their lived experience,” said Drame.
So, the group, joined by another mother and co-author, Judy Nardi, began to think about other ways of telling their story. They decided to use a collaborative inquiry method to explore particular experiences of Black families raising a child on the autism spectrum. Drame added an academic and personal perspective.
“I don’t have a child on the autism spectrum, but I do have a niece. I’ve been working in this field for many years, starting with providing in-home therapy and teaching children with autism in Chicago.
At first, only the three moms and Drame were the focus of the book, but then they put the call out for more parents and families to share their experiences. “It just snowballed,” said Drame. The book was two and a half years in the making. The co-authors were engaged in all aspects of the research, from design, to data collection, analysis, sense-making and writing.
The book integrates quotes from parents with academic literature and insights to explore the specific challenges Black parents face in obtaining an autism diagnosis, securing resources and necessary information, identifying quality schools, interacting in communities and communicating with professionals.
“The literature is very clear that there are a lot of barriers for caregivers in general, but for Black families and caregivers in particular, the racial bias and systemic racism makes it even more challenging,” said Drame.
“One of the things we kept hearing over and over again, is that no matter how much knowledge a person brought into the interaction or their education or personal resources, they were still not able to access the information they needed at a critical time,” she added.
One mother in the book wrote about going to the park with her 11-year-old autistic child, where she met a White woman who also had an autistic child. They started talking, and the White mother mentioned some helpful resources she’d found.
The Black mother was quoted in the book: “I have a master’s degree, I’m a social worker. I’ve been asking for these resources, and I still didn’t get access. I just happened to be talking to somebody in the park and got all this information; why is that?”
Young Black boys face particular challenges, according to those contributing to the book. For some, teachers saw their child’s autistic behavior simply as misbehavior and sent them to the principal’s office. And, especially as the young boys grew older, these responses to perceived misbehavior grew worse.
“There’s a tipping point where they’re no longer seen as cute and their autism, maleness and Blackness combine into a triple threat,” said Drame. One mom talked about that shift taking place when her son was about eight years old. The teachers stopped planning strategies and adaptations for him, and instead told her: “You need to give us permission to call the police when he’s acting up.” The mother responded: “Absolutely not. The strategies you were using when he was six or seven were working, so why not continue working on those strategies?”
The book offers advice and recommendations for families and professionals on ways to build better communication and partnerships for the benefit of the child.
“Professionals do have a moral and ethical responsibility to confront their own racial biases, and be willing to listen, to communicate authentically with families,” said Drame. Support groups that include Black family members and caregivers are also important, she adds, as is connecting families to useful resources. “You can’t just say, ‘here’s a packet of resources’ and expect families to take it up and move forward.”
“You need to able to work with the family in partnership; that involves being able to establish a long-term relationship with them.”
The book was designed to be accessible to parents, students and professionals, according to Drame.
“About 85 percent of the book is in the form of vignettes or extended quotes from parents. There’s interpretation and research intertwined, but the majority of the book is written in the voice of parents.” The book is available through Amazon and Peter Lang Publishers.
If you would like to help fund Community Engagement & Research, please visit the Give to School of Education webpage.