As I have begun sharing my writing on PDA, I’ve also been reflecting on how I use language in relation to it. As a neurotypical and highly verbal mother of an Autistic child, I’m finding numerous and complex communication challenges.
For example, I’ve learned it is not always so straightforward to reach out to parents of PDA children, as many resist the notion that their child is Autistic, because the PDA presentation is atypical on the spectrum, and not yet widely recognized. On the other hand, reading the work of Autistic adults, I also see that I must be careful with my language, as some find person-first language -- “young child with the Pathological Demand Avoidance (PDA) profile of Autism” – dehumanizing, preferring to be called “Autistic,” while others take issue with using terms like “challenging” as a descriptor of Autistic behavior.
Amidst these linguistic landmines, my desire is to write in a way that is familiar for parents, grounded in their day-to-day experiences, and non-judgmental of the thoughts and feelings many of us have. And I feel my professional life -- the one I left behind more than a year ago to care for my son -- gave me plenty of experience communicating complicated topics. After all, I was trained as a social scientist, and I’ve offered original definitions for my own empirical work, and determined the meaning, application and context for particular words.
And yet this new realm I’m in is challenging me. While I was trained to understand that the labels we use impact the individual we describe, and shape our society and culture’s perception of that individual or group, these concepts are no longer mere thought exercises for me. Now I see them as the guardrails of daily life, and I take them seriously.
Every time I accidentally say, “I have a child with Autism,” I correct myself to say that I have an “Autistic son.” When I am then, in turn, told by people to use person-first language, I try to explain that, actually, when I read the work of Autistic advocates, the majority seem to prefer the way I have described my son. And when I then second guess my position later, I remind myself that when Cooper is old enough to fully grasp his different brain wiring, which I have been explaining to him without any labels at all, I will simply ask him his preference. In the meantime, though, I must navigate the liminal space of a mother who communicates frequently with those who do not have even the tip of a toenail in the Autistic world about the implicit needs and workings of a child who primarily lives there, because it is who he is as a human.
Stepping into this liminal space includes not only questioning everything I write and share from an intellectual perspective, it also entails reimagining all forms of communication with my son in my home, as his mother. As the trust builds between us, I have begun to better navigate his non-verbal ways of communicating with me: his facial expressions, the way his body moves, the drawings and symbols he leaves on my pillow case before bed. His sounds are beginning to take on more meaning, as I do the anthropological work of deciphering his internal state and experience of the world, as an outsider. This process has also included learning to change my own language, so as not to trigger Cooper’s demand avoidance, and thus his fight-or-flight response. By shifting away from questions or imperatives (moving from “Did you eat your apple?” or “It’s time to eat your apple.” to “I notice you still have an apple on your plate.”), I sense his anxiety reducing, his willingness to express himself verbally increasing.
In rare moments of more rest and clarity, I allow myself the notion that parenting an Autistic child is not so diametrically opposed to the professional life of the woman that I used to be. Rather, it is a different lens through which to view, practice, and apply my values and academic interests. It is simply on a micro-scale, with a sample size of one.
Primary among my professional interests was the study of violence, reconciliation, and peace. Specifically, I looked at how and why peacebuilding occurs after civil war, where those who previously used violence against one another now continued to live in the same community. So I was interested in PDAer Harry Thompson’s blog post about an Autistic son who breaks his mother’s arm during a meltdown. Not only was the subject compelling for me, but the post was titled “The Violent Meltdown is a Misnomer and a Fallacy,” and in it Thompson noted that the boy’s “mother made the most astonishing statement: she had experience of violent and abusive people in her past, but explained that her son was NOT violent, including the time he broke her arm.”
This post challenged me. Intellectually, I agreed with its premise. I understood that violence was not a part of this Autistic individual’s inherent being, rather his meltdown was likely in response to the context and triggers of a culture that doesn’t accommodate social disability in a way that mitigates this reaction. Similarly, I recognized that her son’s behavior shouldn’t fall within a definition of violence that reflects the intentional “use of physical force so as to injure, abuse, damage, or destroy”. Rather when he broke her arm, it was part of a physiological reaction caused by his brain-wiring and not under his control.
However, despite my logical understanding, my body and heart wouldn’t let go of the words, “violence” and “violent.” They haven’t let me leave those terms in the burial ground of my former way of speaking, but rather have been dragging them with me into this new, post-PDA-realization phase of life.
As I thought about it more, I realized that unlike the person-first formulation – which I correct intentionally – I want to keep the words “violence” and “violent” in my writing. These words remain because I believe that when used judiciously and thoughtfully, with respect for context and nuance, they accurately describe my personal experience of violence while parenting a PDA child. I use them as descriptors of an “intense, turbulent, or furious and often destructive action or force.” It is a depersonalized usage - “Cooper had a violent panic attack” instead of. “Cooper is violent.” - making clear that none of these meltdowns are intentional, nor under a PDA child’s control.
As the mother of a PDA child, I have needed “violent” as part of my daily vernacular. I needed it for the conversation at the end of my husband’s work day when I explained how I protected the baby, that I’d had a heavy object thrown directly at my face, or why my hands were shaking too hard to hold my phone. This is the word I allow myself when I hold buzzers in my hands during EMDR therapy sessions and work through memories of my own trauma from the past six years. It is also the grace I give myself when I wake up with night sweats in the wee hours and must change my pajamas, soaked in the subconscious memories that persist from the early months after Cooper’s birth. The time that felt like post-partum torture, woken every 20 minutes to incessant screaming, and shut in a one-bedroom apartment during a dark winter, awash with depression, alone, isolated.
I cling to these words because, for me, parenting a PDA child has been a violent experience. Pointing this out does not negate my compassion or understanding that this experience is not Cooper’s fault, but rather is a way of holding space for those moments of the violation of self. By sharing this, I also seek to acknowledge, validate, support, and truly see other parents of PDA children. I want to use words that make sense to them, that capture their moment-to-moment experience, creating a more solid ground on which to build the fragile scaffolding of healing and perhaps their own change. Because I believe these words, said aloud, are a starting point for necessary transformation.
I also need the word “violence” if I am going to fully acknowledge how I unknowingly perpetuated it in my own home before I came to understand how my son’s brain worked -- the moments when I demanded that my Autistic son look at me, answer me, when I moved his body against his will, shut him behind closed doors for “time-outs” or insisted that he eat something he registered as a threat to his safety. I now recognize these were also moments of physical violation, of injury, of emotional and physical pain for him. On my part, this violence was not intentional, but that does not erase its “intense, destructive force.” And I am so sorry. I have promised him and myself that I will do better.
I keep this promise by allowing myself to acknowledge “violence” honestly so that I can begin to practice what is on the other side of the linguistic coin, “non-violence.” For this practice is how the PDA parent builds peace, intellectually and spiritually, and supports and accommodates a PDA child who on a daily basis “fights” against demands and the people who embody them.
The term “non-violent” has thus become a compelling invitation to change my own behavior, moving me on a deeper philosophical level than words like “gentle” or “child-led” parenting. Non-violence allows me to acknowledge the depth of my pain and disconnect with my son, as well as his with me, while also laying out a path towards reconciliation. The term does not shy away from the inevitable conflict of collective living in a family with a PDA child. It allows space for PDA parents who must accomplish a seemingly impossible task – to respect and balance the needs of each individual in the home, while not letting the right to peace of one override the right to peace of another.
Years ago, when I embarked on the adventure of collecting original data for my doctoral dissertation in Colombia, I met Pastora Mira, whose daughter was kidnapped, disappeared, and killed by paramilitaries during the conflict. When I interviewed her, she spoke at length about the process of finding the strength to take her pain and transform it into community healing and peacebuilding work. When the paramilitaries left the area, she washed blood off the walls of an old hotel – where community members had been tortured – to turn it into a space of historical memory for the violence that had occurred. On her own, and without permission from the government, she helped other families search for the remains of their own disappeared daughters, scouring the countryside for their buried bones so they could be properly laid to rest. In a particularly stunning moment, she helped organize a reconciliation procession and ceremony in a local church, which she then walked arm-in-arm with the then demobilized combatant responsible for her own daughter’s death.
Mira is now a national figure - she has spoken for the Pope - who represents peace in Colombia. But when I met her, she was just an ordinary person, drinking coffee and smoking cigarettes while we talked in the town square, trying to find a way out of her personal pain. My pain is nothing compared to hers. And I don’t in any way want to equate the moments of fear and violence I have experienced with those of a civil war. But emotionally, like many PDA parents, I do have metaphorical blood on my walls and bones that must be laid to rest. These are the remnants of my own expectations for how I thought things would be when I became a mother, for the child I imagined I would raise, for the life I thought I was destined to live.
And like Mira did, I am learning that I have agency. I can choose to see possibility and hope in an uncertain future. I can embody non-violence in my daily facial expressions, words, tone, and movements, no matter how hard this feels. And I can believe through this work of changing myself first, I, too will build peace.
Sometimes I think of Mira in the midst of one of my son’s meltdowns. When his panic reaction is triggered and both of us feel a fight-to-the death type of anxiety, when I feel debilitated by his screaming and fear and uncertainty pulse in my temples, she reminds me, it is not your child’s responsibility to stop the screaming. It is yours.
And then maybe later that day, or week, when the angels of my better self emerge again, I can step back and marvel at the universe’s perfect challenge for a supposed scholar of peace.