About the Author
Lisa Stringfellow is the parent of three Autistic adult children. She teaches middle school English at an independent school in Boston. Her professional work has appeared in Edutopia, Education Week, and Independent Teacher Magazine. She writes middle grade fiction and is author of A Comb of Wishes (2022) and Kingdom of Dust (2024), published by HarperCollins/Quill Tree Books. Lisa is also a board member at AANE.
I don’t recall the first time I heard the word autism, but I do remember the feeling I had when my first child was diagnosed in 2005…surprise.
That surprise stemmed from the way autism had been presented in the mainstream media and in the world around me, and from the narrow focus of medical research at the time. As a young Black parent, the image of Autistics that I had was mostly white and male.
Disparities in research and interventions are linked to lack of data that takes into account race and ethnicity. A recent study found that only one-quarter of autism studies reported data on race and that in studies from 1990 to 2017, over 60% of participants were white.
These numbers are especially concerning given current data from 2020 that reflects that the percentage of 8-year-old children identified as Autistic was higher in Black, Hispanic, and Asian or Pacific Islander children compared with White children.
My parenting journey has been one of growth and advocacy for my three Autistic adult children, but it can only be fully understood through the lens of race.
My youngest children, twins, were born extremely premature, and I had been told to carefully monitor their developmental milestones. My daughter had a complex profile— requiring a life-saving ventilator to breathe and having a feeding tube—so she qualified for intensive home services as an infant. But I also closely watched her relatively healthy twin brother.
One day I asked my daughter’s occupational therapist, “What does it mean when a child doesn’t make eye contact when you speak to them?” The twins were 18 months old and I had noticed my son often didn’t make eye contact when I interacted with him. She gently mentioned that it could be due to several reasons, but autism was a possibility.
I have family members with physical, intellectual, and other disabilities, but no one in my circle of family or friends had a connection to autism. Naively, I thought that autism was not something that impacted my community.
That’s what erasure does.
As I began my journey of understanding and learning to support my son, and later my two daughters, I felt that erasure in my interactions with clinicians, educators, and the parent community. I didn’t feel seen. My experiences and worries as a Black parent weren’t the same as others. Resources for support weren’t readily available or felt out of reach.
I learned to ask questions. Each of my children’s diagnoses came at different times and in different ways, but for my daughters it felt especially slow. Research mirrors this pattern of invisibility for Black Autistic girls.
Although my son was diagnosed as a toddler, I had strong suspicions that his twin sister was Autistic as well. Doctors often minimized my concerns and encouraged me to prioritize our attention to her physical health. When she finally was medically stable, I succeeded in getting her a neuropsychological evaluation and this time was not surprised by the finding. She was nine years old when she was diagnosed.
In hindsight, there were many signs that my oldest daughter, who is five years older than her siblings, was also on the spectrum, but I think culture played a part in the delay. Black culture so often centers on family and community. Grandparents, aunties, uncles, cousins. People may have opinions about those that are a little “different” but they are part of the group.
From a toddler, my oldest daughter was labeled “shy” by family and the people around us. She did receive some early interventions for speech delay, but I was encouraged by family members to get her involved in activities to build her confidence and social skills. In Girl Scouts, her group leader always told her to “look up” and “be proud of yourself” as if her lack of eye contact was a sign of low self-esteem. She struggled with social awkwardness, anxiety and depression, and other concerns, none of which made sense until her autism diagnosis came. She was seventeen.
As a Black parent, race is always a consideration as I try to help my children navigate the world. My son is now a teen, a tall Black boy who likes to wear hoodies to mitigate sensory overstimulation. When I think of Trayvon Martin, I think of my son. Who won’t give him the benefit of the doubt in the community or might see him as a threat? How do I teach him to stay safe?
For my daughters, how do I help people see their potential and not make assumptions about their needs or abilities? How can I help them avoid the stereotypes so often put on Black girls and women.
For myself, I am happy when I meet other Black families in the autism community. I know we are here, but I am often still a lone voice in support groups and other meetings. How can other Black families and people of color become a bigger part of the conversation—a more visible part of the community?
The answer starts with being seen.
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