What is a "Lower Demand Lifestyle?"
Creating a lower demand lifestyle is often a profoundly counterintuitive endeavor for a parent of a PDA child. In fact, the first time I came across this idea, I thought to myself, This is ridiculous.
You might be thinking the same thing right now, and this is a completely reasonable response. If your child has been violent, seemingly verbally abusive, broken things in your house, defied you at every turn, and refused everything you have asked, the last thing you want to do is to “reward” her by reducing the demands on her. But please bear with me and remember the “panic attack” or “disability” reframe. If we are going to make any progress with the PDA child, we have to abandon “reward-punishment” thinking and internalize the idea that a lower demand lifestyle is really about necessary accommodations instead of lax limitations.
A lower demand lifestyle simply means cutting out any unnecessary demands in your home, to reduce the overall anxiety of the PDA child. And once you let go of the little voice in your head that tells you, "not to let her get away with so much" or that, "she is running the household," this will also reduce your overall anxiety.
The primary purpose of this step is to help your child get out of the vicious cycle that results from existing in constant fight or flight mode. It is also to allow you to stop fighting your child on her resistance, so you can both rest, recover, and eventually reconnect. As such, this process is intimately intertwined with establishing trust with your child, which -- I believe -- is the foundation on which all progress can be built.
As you read this, you may be thinking, OK, but what on earth does a "lower demand lifestyle" mean day to day?
Good question!
How to Create a Lower Demand Lifestyle
The process of creating a lower demand lifestyle is a deeply personal one and requires grounding down into your own values and dealbreakers, as well as coordinating and collaborating with other members of the family.
If your PDA child is old enough and cognitively able, you can also include her in this process, as long as you can connect with her during a moment of calm and regulation - not in the heat of the moment. (For advice on how to include the PDA child in the process, I would reference this book, which is grounded in collaborative and pre-emptive problem solving).
Before involving the PDA child, I would recommend starting not with the demands you will reduce, but rather, asking yourself, What rules or boundaries do I ABSOLUTELY have to keep?
The answer to this question will reflect the unique nature of your family and I can in no way impose my own values on other family structures. I will simply say that in our family, we have one absolutely, non-negotiable rule: You can’t hurt yourself or anyone else physically, emotionally, psychologically, or spiritually. Everything else is truly negotiable.
Now that you have defined your sacred boundaries, ask yourself, What can I let go of?
A good starting point might be to think through the following question:What are my hardest moments of the day with my child?
If it is bath time, maybe you could reduce the number of times she has to bathe during the week. If it is mealtime, perhaps you could stop asking your child to sit at the table for a week or stop requiring her to eat certain foods. Maybe, while the rest of the family sits down for a meal, offer her a tablet at the table or let her eat on the couch in front of the TV. If the hardest moments are when your child is with you at the grocery store, stop taking her to the grocery store. Or if it is when you are trying to have a conversation with another adult, select a time to speak with that adult when someone else can give attention to the PDA child. Or, all of the above.
It can be easy to think, but wait, I have to make my kids eat at the table. But really, you don’t. No one will perish if your kids have carpet picnics while watching Frozen every night. Also, your resistance to these ideas is likely tied more to societal expectations than to what really needs to happen for everyone in your family to be safe and healthy.
What Does a Lower Demand Lifestyle Look Like in the Home?
In our home we have let go of most things that, until I had a PDA child, I assumed were obligatory and intimately wed to being a “good” mother.
Specifically, Cooper is not expected to do the following: brush his hair, eat at the table, eat at particular times, limit screen time, wear shoes most of the time (except at school), say “Please” and “Thank You”, wear real clothes, do virtual school, say “Hello” when someone enters the room, hug us, say “I love you”, do activities with the family, refrain from making loud noises, clean up after himself, make eye contact, stop using his pacifier, or stop using a pull-up at night. These demands can all result in meltdowns. Additionally, each of these demands quickly pushes up his anxiety threshold, which once reached, makes it so difficult for him to function that he may stop eating and communicating with us. It is simply not worth his well-being to push him past his point of tolerance.
As you are reading this, you may feel your heart beating fast - because good Lord, this seems like such a crazy approach! But before you slam the computer shut and disregard these ideas, I want to make a key point. The things I listed above are the demands we do not place on him. It is not a list of the things he never does. The lower demand lifestly simply means that he engages with these demands on his own terms and when his overall anxiety is low enough. He chooses when to do them and he does it on his own timeline, organically and spontaneously, with a clear understanding of why it is necessary or why he wants to do it.
Cooper's journey with eating provides a good illustration of how the lower demand lifestyle works. I spent a year with Cooper in intensive feeding therapy before learning about PDA. The feeding therapy was conducted through the sensory-integration lens and premised on slow, play-based exposure. At home, we followed the SOS protocol and insisted that he eat at the table, at very specific times of the day, six times a day. We would provide an empty bowl he could spit in if the sensory response of his body was too much. At each sitting, we offered him a colorful buffet of preferred foods and "bridge" foods, all separate and not touching on the plate. He was not required to eat the "bridge" foods, but he was expected to interact in some way -- touching, smelling, perhaps touching the tip of his tongue -- with the new foods.
Although Cooper made some ground in the sensory aspect, the gentle SOS approach was simply too much for him due to PDA. He became so controlling and anxious about the food, that every time he would add a new food to his repertoire, he would drop another preferred food. Our occupational therapist was confused as to why -- even as he overcame his sensory resistance to trying out new foods -- he would then drop things he had previously eaten with no problem.
Eventually we came to understand that his sensory issues were not stand-alone, but rather were embedded within his Pathological Demand Avoidance profile of Autism. Unbeknownst to me at the time, his anxiety was so internse around food that to overcome his panic, he tried to control every single thing that was entering into his mouth. This was the reason he would suddenly drop foods he used to love. Similarly, at home, he was so anxious about the demands of the gentle SOS protocol that he was having meltdowns before every meal and snack time. He needed headphones and an ipad to consume anything, and his sensory response was so heightened he would literally gag and vomit when he saw or smelled our foods next to him at the table.
Eventually, we dropped all the demands surrounding food we could. We let him eat in front of a screen, in the living room, at the times he wanted. We permitted him to eat in his bunk bed under a blanket with an ipad. This went on for months, and there were times when my stomach would clench from my own anxiety over the fact that he was only eating three things, none of which were particularly nutritious or healthy.
Over time, however, by lowering the demands around eating, he eventually, slowly started choosing to try new foods - drinking chocolate milk again, trying chicken nuggets at McDonalds, trying out a crunchy granola bar. These advances often came as an utter surprise to me and, from my perspective, out of no where. However, I now understand that by truly lowering the demands around food, his overall anxiety was reduced. He could then override his demand avoidance in particular moments because he was in control.
Although we have stopped asking Cooper to come to the table at mealtimes, about four months ago we began setting a place for him at the family table with his preferred foods. We were explicit that he was not expected to sit with us or acknowledge his place setting. However, we wanted to create a symbol of his space at the table and within our family, regardless of whether or not he joined us. Now, to my utter surprise, he sometimes joins us with an ipad or will bring paper and markers to the table and invite us to do "superhero drawing contests." Other times he completely ignores us and the food we set. It’s all OK. What matters is that he is eating, the meltdowns around food have stopped, and we are better able to enjoy each others’ company, even if it is not during a "traditional" family meal.
As difficult as it has been -- and although our mealtimes still look very different than in most families -- the logic of the lower demand lifestyle has allowed our son to then step outside of his comfort zone with food and mealtimes in really amazing ways. (For another personal example of reducing demands, please see the Screen Time post)
The Lower Demand Lifestyle is Hard Work for Parents
Please know that I fully understand how very challenging for a family it is to implement a lower demand lifestyle. As you begin, there might be genuine fear that if you give your child an inch, she will take one hundred million miles. If she doesn’t have to bathe one night, she will never bathe again. If you don’t hold the line on screen time, she will end up watching a screen 24 hours a day. This is a real, valid fear and it can be scary to "let go" of what feels like control over the situation. When you first let your boundaries down, you may see behavior that makes it seem as if your child is going in the one-hundred-million-miles direction. However, a lower demand lifestyle is not a free-for-all, and you will still keep the boundaries you need to have in place for your sanity and health.
Engaging in a lower demand lifestyle also means confronting judgment from people who simply don't understand what your life is like or how your child's brain works. When your child doesn’t say “Please” and “Thank You,” other people judge you. When you don’t make them do their homework, you likely have to contend with a school system that does not understand your child or PDA.
Not only do you have to endure with the judgement of others and society, but by lowering the demands in your home on your child, you increase the demands on yourself. I recognize and validate this. I completely understand that if you let your child eat away from the table, you have to clean up crumbs from the couch and vacuum more frequently. That if you don’t make your child wear shoes outside or on the way to the car, you have to do more laundry and spend more money on socks. These are indeed frustrating tradeoffs. But try to remember that for the PDA family, the tradeoff is not crumbs vs. happy family meals. The true tradeoff is crumbs vs. the mental health of your PDA child and your family stability.
Finally, the lower demand lifestyle is diffcult because it requires parents -- usually the mother -- to make a constant cost-benefit analysis according to the PDA child's hour-by-hour anxiety theshold. It is a process of trial and error. Of holding some boundaries, while dropping others. You make mistakes, you learn, you backtrack, you start again. This process is mentally exhausting and hopefully parents can be compassionate with themselves and each other, while they engage in this type of household transformation.
Try to take heart and know that it won’t always be like this, and to have faith that if you pair lowering demands with choice and autonomy, as well as trust, over time you will help your child identify her own appropriate boundaries. Remember, as you lower the child's anxiety, you will begin to recognize her demand threshold and better understand where you can "push" a little and where you need to hold off. I believe there will eventually be a benefit to the high cost of implementing this new lifestyle.
Finally, it is important to keep in mind that the lower demand lifestyle does not mean you are giving up on your child. Contrary to how it might feel at first, you are not training your child to internalize "bad behaviors" by “allowing” them in the home. In reality, you are simply using a tool to keep your child's anxiety at a low enough level so that she can access things like learning at school or tolerating the dealbreaker demands like allowing her brother to have a turn with the remote occasionally. It means you are prioritizing what really matters -- your family stability over societal norms and expctations, your child's well-being over convenience and clean carpets.
You are doing exactly what you should be doing: what is best for your family.
(PS. Listen to Podcast Episode 4 -- "Lowering Demands in the Home" -- for more information on this strategy and its impact on the family!)
(Photo of Cooper, Age 5)