A Conversation with Dr. Jeannine Dingus-Eason on her new book, “A Thousand Worries: Black Women Mothering Autistic Sons”

In this Q&A, Dr. Jeannine Dingus-Eason (Ph.D. '03, Curriculum & Instruction,) reflects on her new book, “A Thousand Worries: Black Women Mothering Autistic Sons”, a powerful examination of Black mothering, advocacy and care at the intersections of race, disability, gender and class. Drawing from scholarship, lived experience, as well as community narratives, the book centers voices that are too often excluded from dominant conversations about autism.

Through her responses, Dr. Dingus-Eason shares what inspired the book and what she hopes educators, policymakers, families and communities take away from this work.

About Dr. Jeannine Dingus-Eason

Dr. Jeannine Dingus-Eason is Dean of College of Education and Human Services at Rider University. A graduate of the University of Washington, her scholarship focuses on educational equity, teacher socialization, Black women’s leadership and the experiences of Black mothers raising autistic sons.

What inspired you to write A Thousand Worries?  

When my son was first diagnosed more than twenty years ago, national autism rates were estimated at one in sixty four. Today, that number is closer to one in thirty one children. Autism cuts across communities, race, and class. 

And yet, I struggled with how autism parenting was so often presented through a singular lens of White motherhood. I wanted to be in community with other autism mothers and families, but the messaging I encountered felt exclusionary. I also could not relate to the dominant images of autism mothering online, which frequently centered upper middle class White mothers as the voice of the autism community, with the financial means to devote their full time attention to autism advocacy and care. At times, I questioned why access to autism services seemed like a kind of insider knowledge, shared quietly within certain circles and withheld from others. 

I remember sitting on a panel at a local autism conference where I spoke about my concerns raising a Black boy with autism. I attended the conference with an open mind, hoping to meet people and learn more about local resources. Immediately after the session, a woman approached me and said, “How dare you speak about race here. Autism has nothing to do with race.” I pushed back and told her that my experience of autism is very much shaped by race. At that moment, I found myself at a conference that had just emphasized the importance of the autism community and inclusiveness, only to be told that race had no place in that community. That stayed with me. 

That same exclusion showed up in quieter ways as well. When I took my son to appointments at the developmental center, I rarely saw other mothers who looked like me sitting in the waiting room. 

It became clear that if I was longing for community, I would have to find it elsewhere. I needed to locate other Black autism mothers. That search raised new questions. Where were the other Black autism mothers, and how were they raising their children, their sons in particular? 

Why was it important to center the experiences of Black mothers of autistic sons?  

Black mothers are especially concerned about our children’s safety and their ability to thrive and be whole within the realities of systemic oppression. As the mother of a Black son, I am acutely aware that he moves through the world in a body that often raises alarm in public spaces and triggers a host of negative assumptions, despite the fact that he is sweet, loving, and intellectually curious. Black boys are routinely adultified, criminalized, and perceived as threatening. These are not abstract fears but legitimate concerns that shape what Patricia Hill Collins describes as motherwork, where Black mothers are keenly aware of the sociopolitical contexts in which we raise our children. Mothers grounded in motherwork understand that educating our children is a political act. 

When autism is added to these realities, particularly widespread misunderstandings of autism related behaviors such as stimming or lack of eye contact, the risks only intensify. There are many reasons, then, why the concerns of Black autism mothers are central to my work. 

I am also driven by questions about the specific and varied experiences of Black autism mothers. How do we talk about autism? How do our families understand it? What is the impact of autism on our relationships? How does the intersection of race, class, gender and autism directly impact BAMs parenting strategies? 

For example, the book explores how Black autism mothers navigate “the talk,” the protective practice of preparing Black boys for hypersurveillance, criminalization, police brutality, and racial profiling. How do Black autism mothers teach safety strategies to sons who are often perceived as “looking normal” while their behaviors are misunderstood? These questions, taken together, underscored the need for a focused study on Black autism mothers. 

The book brought together all facets of my identity as a Black mother, scholar, woman, leader, and community member. In some corners of the academy, there is still an assumption that identity must be fragmented and that, especially for Black women, we are expected to show up in one dimensional ways, neatly contained, with scholarship elevated above all else. Yet identity is layered and nuanced, and this book reflects that complexity. 

I address this explicitly at the outset. The study is based on the experiences of fourteen plus one, meaning fourteen participating Black autism mothers, with the plus one being myself. The autoethnographic elements appear through my narratives at the beginning of each chapter. These reflections set the tone and provide context for the themes that follow. More than a literary device, they underscore the shared experiences and common threads that emerge at the intersection of our identities. 

As my family and I navigated autism diagnosis, schooling, and the many uncertainties that followed, journaling became both a release and a lifeline. It was essential to my mental health during periods marked by fear and unanswered questions. Through journaling, I named what I was experiencing, gave voice to the feelings I could not always say aloud, and extended grace to myself. At some point, the scholar in me recognized that I was doing precisely what I asked of the women in the study. I was naming and interrogating the particularities of being a Black mother at the intersection of race, class, gender, and autism. 
 

What do you hope educators and policymakers take away from this work?  

BAMs learned special education policies and showed up ready to participate in decision-making for their sons. As one participant noted, if you are not at the table, you are on the menu. So, these mothers came prepared to advocate with a well-rounded picture of their sons, who in some instances, were described in disparaging terms. No matter what level of autism their sons were classified under, BAMs held high expectations and expected educators to do the same.  

Readers will see in several instances across the book, how BAMs presence at the IEP table is challenged and unwelcomed, with tensions around IEPs, classroom supports and a negative focus on BAMs. Thus, I think it’s important that educators revisit ideas about what happens when Black mothers show up around the special education table – are schools open to partnerships? Are Black autistic young men labeled as problems? Or, how do schools emphasize hope and strengths? How do schools recognize familial strengths and work in collaboration with Black autism families? So, I think the book calls on educators to do the work of culturally responsive approaches to engaging Black autism families, specifically, to listen, learn, and share resources.  

Policy makers must attend to autism across the lifespan, particularly programs that support adults with autism. Look around at your clients – who do you see and who don’t you see? Access to services for Black families across the lifespan is an issue that policy makers must take into consideration where programs are located; transportation to and from programs; vocational training, and the opportunity to participate in community settings. BAMs parenting adult children have legitimate concerns about access to services across the lifespan and life planning. Some families have pieced together support nets but they are in need of coordinated services. So again, attention must be paid to access and sustained funding streams to ensure continuity of services, a concern that BAMs across the book raised.  
 

How does this book connect to your broader commitment to educational equity?  

I start the book with exclusion because exclusion is how inequity shows up in real life. In the autism community, language often becomes a gatekeeper. Families who were never given access to the discourse are then criticized for not using the “right” terms, which results in a double penalty of exclusion and judgment. That matters for educational equity because exclusion from community also means exclusion from information, advocacy networks, programs, services, and resources that shape educational outcomes. Using an intersectional lens helps surface how race, class, and power shape who gets access, whose voices count, and who is left navigating educational systems without support. At the same time, excluded families still have agency, often making a way out of no way, as on the margins. An intersectional lens helps us see both the inequities at play and imagine what true inclusion could make possible. 
 

What impact do you hope the book has on families and communities?  

I hope the book expands how we think about what autism looks like across intersections of race, class, and gender. There is no single rendering of autism. No two autistic individuals are the same. 

In the book, I also address disparities in autism diagnosis for Black families. Our children are misdiagnosed at higher rates and diagnosed later than other groups. Underneath those patterns are perceptions of Black families and children. Too often, professionals are not listening, important cues are dismissed, and critical developmental and therapeutic windows are missed. The nerd in me hoped the book would give Black autism mothers a shared language and evidence to push back against misdiagnosis, delayed diagnosis, narrow ideas of who is deserving of services, and the ways “community” too often excludes. 

More broadly, I hope the book opens the door to more nuanced understandings of autism mothering. While I focus primarily on Black autism mothers raising sons and the thousand worries that accompany raising Black autistic males, there are also many Black autism mothers raising daughters. What does motherwork look like in those families? What are their thousand worries? And increasingly, what does autism mothering look like for immigrant families who rely on schools and service systems that are now under siege by ICE in some states; systems they may have already struggled to navigate because of language barriers, cultural differences, or fear? 
 

On a lighter note—what’s something that brought you joy or helped you recharge while writing this book? 

The joy came from the company of BAMs and from the honor of learning and sharing their stories. I met extraordinary mothers while writing this book, some who have been on the autism journey for years and others who are just beginning. All of them brought fierce advocacy and deep love for their sons, and I am profoundly grateful that they entrusted me with their narratives. 

I find joy in seeing BAMs on social media sharing their stories and humanizing their children through love, laughter, and dance, simply showing everyday life. There is also joy when I talk about the book and someone says they are going to share it with a family member who has a child on the spectrum. In that moment, I know they see that child and they see that parent. That brings me joy.