When Autism Becomes Your Teacher: How RFT and ACT Shaped Me as a Parent and a Scientist
By Sylvie Nguena, Ph.D., BCBA-D
As we’ve noted, communities of practice involve the sharing of stories, as they are practitioner spaces, which recognize the value of many ways of knowing about our work, exploring diverse perspectives, as told through our real life experiences. Over the next few weeks and months, we’ll be sharing some of those stories—the topics that each of us are passionate about, reflecting the range of experiences we all bring to the lab table. This week, Sylvie Nguena shares her story, we hope you enjoy it!
As we often say in contextual behavioral science, behavior makes sense in context. But sometimes, the context that shapes you most is not a lab, a classroom, or a clinic.
Sometimes, it is your child.
Before I ever studied Relational Frame Theory (RFT) or practiced Acceptance and Commitment Therapy (ACT), I was an accountant. My professional world was structured, precise, predictable. Then my daughter was diagnosed with autism spectrum disorder and intellectual disability. Predictability disappeared.
She was the first person who introduced me to autism. Not a textbook. Not a training. Not a conference. My child.
Like many Black immigrant parents, I entered systems that were not built with us in mind. Research shows that minority children—particularly Black and Latino children—are often diagnosed later than their white peers (Burkett et al., 2015; Constantino et al., 2020). Those delays mean missed years of early intervention, years that are critical for long-term outcomes.
I didn’t just want services. I wanted understanding. I wanted equity. That search reshaped my life.
From Accounting to Behavior Analysis
ACT teaches us that values are chosen directions. When my daughter was diagnosed, I could have stayed in accounting. It would have been easier. More predictable.
But easier was not aligned.
So I changed careers. I trained in behavior analysis. I pursued research. I became a board-certified behavior analyst at the doctoral level.
It was not linear. I studied while parenting, advocating, navigating therapies, and managing doubt. RFT helped me see how language can entangle us—how thoughts like This is too hard or You’re not enough can function as barriers.
ACT helped me practice something harder: making room for those thoughts while continuing to move toward my values.
Not because it felt good.
But because it mattered.
Finding My Voice in Community
Joining the Constellations Community of Practice deepened this work. Being in a lab space devoted to RFT and ACT did more than strengthen my conceptual understanding—it strengthened my confidence.
For a long time, unhelpful thoughts showed up loudly: Your English is not good enough. You cannot do this. In academic spaces, those thoughts can feel like facts.
Through community, dialogue, and practice, I learned to see them as thoughts—not truths. I learned to build bridges instead of withdrawing. To speak anyway. To write anyway. To contribute anyway.
Psychological flexibility became personal.
When Science Meets Culture
As I trained in ACT and RFT, something became clear: these models are powerful—but most tools were developed in Western, English-speaking contexts.
Yet many of the families I work with—and the family I belong to—are immigrants from West and Central Africa.
The lack of culturally adapted interventions—combined with limited cultural competency and humility among practitioners—continues to complicate care for immigrant families of children with ASD (Conners & Capell, 2020; Wright, 2019).
So I began developing culturally adapted ACT exercises for immigrant parents of children with ASD. Exercises that honor collectivist values, migration stress, faith, extended family systems, and systemic inequities.
If RFT teaches us that meaning is relational and contextual, then cultural adaptation is not an add-on. It is scientifically coherent.
Writing Ourselves Into the Story
My daughter did more than introduce me to autism. She changed how our family talks about it.
When my other two daughters and I searched for children’s books about autism, we rarely saw characters who looked like us.
So we wrote one.
We wrote a picture book, Marvelous Meghan: Our Big Sister, featuring my daughter at the center of the story. Not as a problem to fix. Not as an inspiration trope. But as a whole child.
The book has been translated into French, Spanish, and German to increase accessibility for families like ours. It has been used internationally to raise awareness about autism in Black communities—where later diagnoses remain a documented concern (Burkett et al., 2015; Constantino et al., 2020).
Representation is not cosmetic. It is preventive.
Staying in Alignment
There were moments when stepping back would have been easier—when academia felt isolating, when advocacy felt heavy.
But ACT reminds us: values are patterns of action.
For me, those values include equity, cultural humility, science, family, and dignity.
My daughter was my first teacher in autism. She is still my most important one.
And perhaps that is the most contextual truth of all: sometimes the science we practice professionally is first learned at the kitchen table.
References:
Burkett, K., Morris, E., Manning-Courtney, P., Anthony, J., & Shambley-Ebron, D. (2015). African American families on autism diagnosis and treatment: The influence of culture. Journal of Autism and Developmental Disorders, 45(10), 3244–3254. https://doi.org/10.1007/s10803-015-2482-3
Conners, B. M., & Capell, S. T. (Eds.). (2020). Multiculturalism and diversity in applied behavior analysis: Bridging theory and application. Routledge.
Constantino, J. N., Abbacchi, A. M., Saulnier, C., Klaiman, C., Mandell, D. S., Zhang, Y., & Geschwind, D. H. (2020). Timing of the diagnosis of autism in African American children. Pediatrics, 146(3), e20193629. https://doi.org/10.1542/peds.2019-3629
Ouelega, N. H., Ouelega, S., & Ouelega, S. (2023). Marvelous Meghan: Our big sister. Independently published.
Wright, P. I. (2019). Cultural humility in the practice of applied behavior analysis. Behavior Analysis in Practice, 12(4), 805–809.
