Agape Produces NeuroRadiance
NeuroRadiance isn’t just for the immediate family in a given home. It is an opportunity for anyone close enough to care and act in the lives of our beloved Neurodivergents. As a grandfather of our beloved girly-q that Em often refers to, I had a recent experience that gave me a glimpse into this journey of navigating neurodivergence through the lens of faith in the living God of the Bible.
I was visiting the house, and it started out as a pretty pleasant visit just hanging out and admiring a new pet lizard Evie had received. Through a series of events, she spiraled into a meltdown. For whatever reason it is not uncommon that I can create a diversion by going for a walk, or a bike ride or similar activity. On this day, it was rollerskating. We had a rocky start but eventually we got the skates on and got out on the road. It started off quite nice actually, with just some chitchat and holding hands and talking about the difference between skating on rough streets and smooth streets. It seemed the meltdown had been avoided.
Please pardon an interruption. A quick trip down a side street might be helpful here if you are fairly new to the world of neurodivergence like me (this is another article for another time if I am permitted another appearance…). There is a term that is used to describe a profile of autism. The term is Pathological Demand Avoidance (PDA), also known as Pervasive Drive for Autonomy. People with PDA can experience a fight, flight, or freeze response when faced with demands that threaten their autonomy. This fight or flight response can trigger intense emotional reactions. Understanding the core characteristics of PDA can help caregivers and healthcare professionals respond with more empathy and attunement, which is crucial for effectively supporting individuals with PDA.
Now back to our show…
At one point, our little skater was feeling more confident, and got out a little farther than I was comfortable with. Given the intersections and cars that go through them it just seemed worth some caution. I called out for our skater to stop. I could sense her ramping up a little bit from our incident back at the house. In what I now saw as a streak of PDA, she shot out ahead and across the street. It was clear that the plan was to skate on and away very independently. I wasn’t real sure where this was going to lead, so I called out to stop again at which point she fell. The fall was angrily declared to be my fault, and long story short, a full-blown meltdown was underway. For her own safety and the circumstances at hand, I basically needed to put her up on my shoulders and carry her home. I carried a very loud, hot mess for six or seven blocks with a couple of neighborhood folks looking on.
If you know you know.
Backing up in the story just a little bit, I really struggled with the decision to pick her up and do what I sensed I needed to do at the time. I’m definitely no expert in autism and PDA, but along the way I have heard regularly, loud and clear, that per the description of PDA above, the restraining actions that I was considering were likely just going to be gas on the fire. My actions would be perceived as increased threat, and her fight would only get bigger and stronger. I was not disappointed. It was clear by the time we got home that she wanted nothing to do with my presence– in fact she declared that I was “evil” and that I was her “enemy”.
I can feel all of your heads nod all the way here in New Jersey. You all know how I felt. Frustrated. Failure to the core. Remorse. Impotent despair. Let me count the ways. None of these though were about me. It was a deep shattering. I intended to be an instrument of regulation and peace for my girly-q, but in this case I was the immediate instrument of yet another deeply dark episode. It was about her state at that point though, not about me.
For the rest of the evening, and through the next day, all I wanted to be able to do was to get back into her presence with the hope of her feeling and experiencing my benevolence and love. Then it hit me. What I was seeing is how, despite all of the dynamics of an incident like this, down to being the absolute most detestable thing on earth (and she really believed that at that moment), I needed to have and maintain a mindset of benevolence towards Evie that was not based on working up some warm, fuzzy, cozy feeling that I may have always expected to do with my grandaughter. Working up warm and fuzzies as a coping mechanism went away quite awhile ago. I have come to understand that I need to remain faithful in my love for my neurodivergent grandaughter, both in thought and action, regardless of how she is behaving towards me. I need to continue to act in benevolence by deliberate choice because it’s right. This is empowered by God the Holy Spirit. It’s possible only by understanding what neurodivergence really is and is not. Her behavior isn’t personal, it’s neurodivergent. My love for my girl isn’t based on the flavor of her day, or the way she is capable of receiving or responding to my love.
This is exercising agape love.
Time will not allow us to outline the various forms of love expressed in the New Testament. For now we will briefly focus on just one-Agape. Agape is very often a misunderstood and mis-taught concept. It is often oversimplified to mean “unconditional love”. This can be defined in a number of ways. It usually revolves around something like, “Unconditional love is when you love someone no matter what they do and have no expectation of repayment. It means you love someone for who they are, with no strings attached.” (https://psychcentral.com/lib/soulmates-and-unconditional-love#what-is-unconditional-love, 12/4/24). We can discuss and debate if this is a good definition or not; whether or not it’s a good thing, etc., but the point for now is that this is not agape love. Agape love is not simply benevolence exercised without qualification or conditions for doing so. Agape love is not devoid of discernment between good and evil, between healthy and dysfunctional. Agape is not always devoid of feelings either! My feelings of love and benevolence for my girly-q are almost always there. It’s just that the genesis of the benevolence can’t depend on them– the benevolence isn’t based on how I feel. The benevolence is based on moral preference to love this child. Agape moves in benevolence because it is the morally right choice to do so, whether it feels good and nice or not (whether I can be in her presence and get the cuddles to feel the love or not). For a lot of reasons, in the end it can often look like “unconditional love” in the way most people think of it, but that’s not the root. The root is acting for another’s good for reasons that God calls morally right. This is a choice we as secondary caregivers and friends of neurodivergent families have to make. If we are to be imitators of God… do we really have any other option?
Jesus says in John 15:13, “Greater love has no one than this, that someone lay down his life for his friends.” He uses a form of the word agape here when referring to love. I would propose that He says that no one has greater love than this type of love because it doesn’t function on whether we are “feeling it” or not. I would propose that the type of love Jesus is talking about does just the opposite. Laying down our lives in agape love functions on a deliberate choice for what is benevolent and morally right according to God because we are not feeling it and likely won’t! For a number of reasons, I would propose that agape is really only possible if it is empowered by God’s grace.
If I do all this, I manifest NeuroRadiance.
If I don’t, it spirals into something really ugly and dysfunctional.
It certainly doesn’t make it any easier, but nobody ever claimed that agape love, and by extension NeuroRadiance, was easy.
Just necessary and empowered from On High.
Me and my girly-q are friends again.