Offer Control and Autonomy
Offering control and autonomy to your PDA child is the necessary other side of the "lower demand lifestyle" coin. While lowering demands removes unnecessary daily requests that trigger your child's fight or flight response, control and autonomy are the primary tool by which your child can eventually take more agency in his life. I believe that control and autonomy are what have allowed my son to start thinking more creatively about solutions to problems within our household, and this has lessened my overwhelming anxiety about whether he will be equipped to manage himself independently some day.
Like the lower demand lifestyle principle, offering control and autonomy may feel counter-intuitive and like you are “rewarding bad behavior." I understand that, but as a gentle reminder of the reframe we PDA parents are internalizing, your child’s brain wiring is such that when he perceives he has lost control and autonomy, his anxiety surges to the point where it can interrupt social relationships, cognitive development, and daily functioning.
By offering more autonomy within the home and family setting, you are implicitly inviting more opportunity for your child to think, plan, and safely experience the results of his decisions. Autonomy is an invitation to the "thinking" part of his brain to get back in the steering wheel, distinct from when he is near, or in fight or flight mode, and essentially on auto-pilot.
As you carefully hand over more of the reigns to your PDA child, this can feel scary, so you might begin with small, low-stakes scenarios. Like when it is just the two of your at home, and when the biggest "risk" is, say, creating a mess in the kitchen while making potions out of every ingredient in the cupboard. Or spending two hours bouncing your child on the trampoline even though in Michigan it is only 30 degrees out and it is the last thing you feel like doing...
But before you go grab your snowpants, read on a bit more, as I actually think there is a step before control and autonomy - choice - and another after - logical explanations. I've broken down all three below.
Choices are important for the PDA child, but they aren't a magic bullet. I like to think of them as control and autonomy "light" because really, choices are still parameters you set. They are like a menu of options, but often a PDA child has the impulse to throw the menu out the window. Like so much with the PDA child, the degree to which you can use choice depends on the level of anxiety your child is experiencing in that particular day or moment.
For example, if I am trying to gently push Cooper to do something that I feel is healthy or important – like leaving the house for fresh air – I might say something like,
“Would you like to go on your bike, in the car, or on a walk to the park?”
In an ideal situation -- when his cumulative anxiety is low -- he might willingly make a choice about the mode by which he goes to the park, while we avoid the triggering nature of the "demand" of whether we go to the park, because it is buried beneath a choice.
This technique, however, will not work if his anxiety level is too high. In the case that Cooper is dysregulated that day, he might scream “NO!” and run from me in response to the choices presented. In this case, I negotiate an alternative option or drop going to the park all together.
Interestingly, where I have found choice to be most helpful is not to get Cooper to do something I want him to do, but rather to ground abstract concepts that he has trouble wrapping his mind around.
For a long time in our home, the most common response to questions like, "What do you want to do?" "What do you want to eat?" "What do you want to watch on TV?" was a frustrated, "I DON'T KNOW!" Often, Cooper would then fixate on the fact that he couldn't think of anything, and everything I would suggest was something he would reject. The negative spiral would begin and my frustration would mount. However, over time, I realized that he wasn't truly rejecting the choices I was giving him. He actually hadn't understood the options I was giving him.
I realized that when I offered a choice like, "What park do you want to go to, X or Y?", he had no idea what I was talking about. He simply could not connect the name of a park to a place he remembered or could visualize. Even if he had been to that specific park 50 times. Even if he had been to the park the day before. This was a revelation for me. As I started doing more research, I learned that choices -- when verbally delivered and part of a question -- can be too overwhelming for a child with slow auditory processing challenges or a quick panic response. It could also be that my son has trouble visualizing abstract ideas or remembering names, and rather thinks in pictures, which is common among Autistic individuals according to this interesting blog post.
After this lightbulb moment, I started using a different type of choice with Cooper. I began offering non-verbal choices grounded in visual clues, to help tether the verbal communication to something more concrete. This is not the same as a laminated visual schedule or a "First X, Then Y" chart. Rather, I would show him pictures of himself in the parks that we had gone too and let him pick which one he wanted to go to. Or, with eating, I would silently set out a buffett of preferred foods on a surface next to him, so that he didn't have to deal with verbal processing or the demand of a question. Finally, with ideas for play, I learned to invite Cooper to engage in play, it was better to get out some materials and strew them silently, rather than to ask a question. Or simply to start engaging in some sort of pretend play myself, without speaking directly to him, so that he could then join or not. All of this has helped him get out of the "I don't know" spiral and feel more autonomy (light) in his day-to-day. (For more on how to use languaage that doesn't trigger a fight or flight response, see this book on declarative language).
Control and Autonomy
More often than "burying" demands within choices, I give Cooper real autonomy and control over as much of his life as I possibly can, while considering the safety and sanity of everyone else in the family. This is not an easy equation and it changes day to day. It does not mean that my son can do whatever he wants, but it does mean he has more autonomy than the average six-year-old.
Giving your child such control and autonomy means getting creative about how to incorporate the needs of other members of the family, including you. It also may prompt unfortunate natural consequences, like arriving late to school or not visiting the park that day. And of course, like the lower demand lifestyle, it will put additional burden on parents by in fact reducing their autonomy (at least in the short term). For example, if you need groceries, but your child doesn't want to go to the store, and is too young to be left home alone, you've either got to find someone to watch her, or wait to get groceries. Similarly, if your child has trouble playing independently (it's a demand), you may not be able to wash dishes until the evening, after they're in bed, when you might prefer to be doing something else.
Here's a more thorough illustration, of how I give Cooper control, and find a compromise for my own.
When my sister invites us over to her house to see the cousins, I give Cooper a choice of whether or not he wants to go. I might say, “Do you want to go over to Aunt Charlotte’s house to see your cousins or would you rather stay here?” And if he doesn’t want to see them, I accept his choice. I stay home with him, without trying to cajole or convince.
Or, if he does want to go over to see his cousins, I help him transition out of our house and into theirs, and make sure I am ready to leave theirs if his anxiety is rising too quickly or if he is becoming dysregulated. And if that's the case, we leave, no matter if I've gotten to spend any quality time with my sister. To the extent humanly possible, I don’t push my son past his threshold and I don’t give him false choices.
Then, when I really want to see my sister, I make plans to see her when someone else is caring for Cooper. This creates a situation where when she invites us over to play with his cousins, the outcome is not wed to my own wants and needs. My sister's house is also a safe space, which is key. She understands that Cooper has PDA, and so doesn't judge me if I say, Hey we had planned to come over at 5:00pm, but I think it will simply be too much for Cooper today. (She and her kids also understand that if we do come over, Cooper will eat the foods he can tolerate - even if they might be considered junk food or treats by them.)
I completely understand that as you are reading this, it might not be what you want hear. I also wish that my plans weren't so tightly wed to my son's anxiety level, and that his need for control didn't diminish my own autonomy. But here's the good news. My overall quality of life -- and paradoxically, my son's ability to be flexible -- has improved immensely since I started accepting our reality and offering him more control. In fact, the more control I give him, the more Cooper is willing to cede control in those moments when I really need to have it.
Further, I try to have faith that, for has hard as it is right now, I am laying the groundwork for a future when he can be more independent because of the experience of autonomy early on and an overall anxiety level that we have kept low enough so that he doesn't have repeated or constant trauma throughout his life. This is not easy. Even with all of the accomodations we provide, Cooper's anxiety is still extremely high, he still has metldowns and panic attacks, and confronts trouble doing things like leaving the couch or eating. All I can do in these moments is to have compassion for him and myself and to remind myself that I am doing the best I can, with the resources I have, in the moment I am living. Like all of us.
Finally, I suggest pairing choices and autonomy with the use of logical explanations – rather than using implicit emotions or unspoken societal expectations – to explain the true reason that you want your child to do something. You might also explain the natural consequences of doing or not doing something, in a very matter-of-fact-way.
While it may feel inappropriate to explain to your child that the reason you want him to eat apples instead of potato chips is because he won’t grow if he doesn’t eat healthy food or that he might have diarrhea if he only eats chips, I have found it to be helpful. I might say things like, Cooper, if you walk outside in the snow in only socks your feet will get wet and cold. -- If you eat that gummy snack now, there won't be any for later. -- If you are screaming like that at William, mommy can't drive the car.
That doesn't mean he won't make these choices -- and of course I do stop him if it is a matter of health or safety -- but I view it as a part of a long-term investment in his brain development. By planting tiny seeds of logic, and tending them over time with repetition, I do think they take root. And considering PDA children often don't care for or possibly even understand rules based on authority, I consider providing an actual explanation much less of a waste of breath. (For more information on use of logic as part of a different parenting paradigm, please reference this helpful blog post from another PDA mom, Sandra McDonnell.)
But perhaps even more importantly, by regularly telling and explaining to my son the truth, and then letting him see that truth play out as natural consequences to his actions, I build trust. And, as I'll dig into more deeply in a subsequent post, this is critical to your relationship with your child, and his long term well-being and development.