By Sunita Theiss, Parent of PDAer
Sunita Theiss is a neurodivergent mom of neurodivergent kids, and a few of her family members identify with PDA. She completed the PDA North America Level 1 certificate in 2023. You can connect with her on Instagram, Substack, or in the PDA Georgia Facebook group.
A mother of a PDA child shares her perspective on this tragedy
Last month, an autistic child in California was fatally shot by a police officer after a family member called the police seeking help. I imagine they desperately wanted support in creating safety for their whole family.
I don’t read the news very much these days (it’s a privileged position to be in), but just days after this tragedy, I saw a flurry of messages and conversations from other neurodivergent moms about the shooting.
According to most reports, Ryan Gainer was upset because he was asked to do chores before pursuing leisure activities. Sure, this would be frustrating for most kids. I expect they’d express their frustration to their parents, too. But most kids aren’t navigating a brain difference that might make their emotional response seem disproportionate to an untrained eye.
I wasn’t there, and I haven’t seen this explicitly stated, but I can’t stop myself from wondering if his upset evolved at some point into a meltdown. I’ve also wondered if, in such a dysregulated state, he experienced an irrational, involuntary drive to protect himself at all costs.
I’m pretty sure even the sight of law enforcement wouldn’t stop a meltdown in its tracks, but it could certainly be an escalating point.
My experience with meltdowns & demand avoidance
Please trust that I am writing from a place of knowing and loving children who experience autistic meltdowns.
Historically, I have kept the details of my children’s and my diagnoses vague. I use language like nervous system disability, brain-based difference, and neurodivergence. I prefer not post pictures of their faces. I avoid using their names in my writing. But Ryan’s family no longer has the option of anonymity, and it makes me wonder if more of us need to be sharing about our own experiences.
I will share that one of the “buckets” of neurodivergence we’re exploring for a few folks in my family is a profile of autism called PDA (Pathological Demand Avoidance, sometimes referred to as a Pervasive/Persistent Drive for Autonomy). Demand avoidance can be part of the experience of autistic and ADHD individuals, but PDA is more extreme and frequently anxiety-driven. In a situation with a PDA child, a demand such as doing chores may make him react as though he feels unsafe or threatened. That is, he may involuntarily, automatically do whatever it takes to feel safe again. In this case, it’s not about getting to do the fun thing after, but that a perceived loss of autonomy made the PDA individual feel viscerally unsafe.
And when you add to that loss of autonomy by introducing to an authority figure like a police officer, the perceived threat to autonomy and agency will increase exponentially. The PDA individual’s internal self-protective drive to survive would increase, too. In other words, their fight or flight response wouldn’t just be activated, it could be off the charts.
In the past, I’ve described that my son lives in a seemingly perpetual state of fight or flight, and that aligns with what I know of the lived experience of PDA individuals. I have had many experiences where I’ve stayed close to him, concerned about something causing dysregulation and a meltdown. I’ve worried he might lash out and risk injuring himself or someone else. It doesn’t help that people assume he’s older than he is, often holding him to a standard of maturity and decorum that wouldn’t be age appropriate for a neurotypical child.
I don’t want to get into the details of specific incidents because I still want to protect his autonomy and privacy, but it’s accurate to say his fight or flight impulse is mostly fight.
Clarifying autistic meltdowns
Autistic meltdowns can take many forms. These are involuntary responses, and they might look like violent outbursts or repetitive, stimming behaviors. They might look like a panic attack. I’ve even heard them referred to as “oversized tantrums” (I cringe even typing this).
An autistic meltdown isn’t manipulative or malicious. Again, it’s involuntary. The autistic individual having the meltdown can’t control their behavior. If the behavior is negative or perceived negatively, I know many individuals who experience shame and remorse about what happened. (To riff off of Ross Greene, kids do well if they can, and I believe most adults do, too.)
With my own family, in the event a meltdown becomes somehow dangerous, we ensure safety, remove ourselves, and give space for the meltdown to run its course. We continue to express affection and love while giving that space, and eventually come back together when everyone is able to regulate their emotions and be present again.
If Ryan Gainer was deep in the throes of a meltdown, my assumption is that his family wanted to create safety for him as well as the people around him. They called the police to help move toward that safety for their family.
And unfortunately, it sounds like the responding officers did what they were trained to do. They used strong, direct language. They told him to get back. I am assuming the officers didn’t know—that is, they weren’t properly educated—that this child may have been behaving the way he was because of an involuntary nervous system response.
Instead of finding the safety they needed to eventually come back together, Ryan’s family watched their son and brother die in front of them. It’s horrific.
The system is broken, but I don’t know what to do
I’ve always believed these things are complicated—politics, allocation of resources, payment and training of law enforcement, the necessity of laws and enforcing those laws, the way our culture and society has evolved since the writing of many of these laws, as well as how we interpret those laws (and in what context).
I know there are people reading this and others in my life whose views don’t align with mine. Thank you for reading. Thank you for being a diverse group of people who span political parties, religious ideologies, and more. I’m grateful for this group of voices in my life, especially when I disagree with you, especially as my views have continued to evolve.
At the same time, I just don’t know how to convey loudly and clearly that supporting people with disabilities, both visible and invisible, is beyond a political issue. A child is dead.
It feels like the whole system is broken. I still think the American experiment is a good one, and I don’t know what the solution is, but what we’re doing is absolutely not working.
I am angry, but it pales in comparison to his family’s grief
I am so angry that a child is dead. I am grieving for his family, barely understanding what they’re experiencing. I know that it’s both hard and joyful to support a child who doesn’t operate within the parameters of what our society deems typical or normal. But that doesn’t mean our children shouldn’t get to live out their lives.
I am enraged that this boy will never go for a run or play video games with his friends again. My heart aches as I write this, listening to my own children watching TV and bickering with each other about what to watch next.
I’m heartbroken that Ryan’s family felt they had no other option than to call the police for help. I wonder what I would do in their position. And it makes me wonder, too, if they were lacking support, education, and resources that might have made it easier and safer to support their son.
I’m frustrated that most of what we know about autism is based on studying the expression of autism young, white boys. Ryan Gainer was black. What we know now is that diagnosis and support is frequently inaccessible for autistic women, adults, and children from basically every other background.
I am also so angry that these officers weren’t appropriately equipped to support neurodivergent individuals. I’m frustrated that even where crisis intervention teams are present, the resources are often insufficient.
No, I don’t know the nature of their training objectively. But I do know what it’s like for many of my friends who work or are married to someone in law enforcement.
Law enforcement officers are given an immense amount of power and responsibility. They are expected to make life-altering, snap decisions without appropriate mental health support before and after. And many people I know work second jobs or take extra shifts in order to make ends meet for their families. I hate that our systems so often under-train and under-resource law enforcement, too.
I am angry, but I’m sure it pales in comparison to the grief and pain Ryan Gainer’s family is experiencing. All I can say again and again is that the system is broken. The options we have to support individuals with disabilities are painfully insufficient.
And it’s my belief that a child is dead because of it.
