Sensory Processing, Occupational Therapy, and PDA 🤸

This week my son William (5) had a sensory evaluation for occupational therapy at the clinic where my PDA son, Cooper (9), has been going for the past four years.  I filled out the sensory profile questionnaire as I sipped my coffee, while William followed the therapist's instructions to catch a tennis ball, stand on a balance beam on one foot like a flamingo, and trace a line inside a maze with a red colored pencil.  Although between tasks William would bounce around the padded space and leap onto the crash pads, he was easily redirected and fairly happy to complete the little "challenges" for the assessment.  It felt like a full circle moment for me after the five years of intensive occupational therapy we have done with Cooper both in the D.C. area and here in Michigan. It reminded me of how much I have learned about sensory experience as it intersects with the PDA, often through mistakes and the moments that didn't work in the therapy room. I wanted to share with you a few of the nuggets that popped into my head during William's evaluation with the hopes that they may lead to some "aha" moments or insights for your own PDA child or teen (or even yourself).  1) When a PDA child, teen, or human is in nervous system burnout, it may not be possible to complete an evaluation or assessment.  Often as parents, we learn about Pathological Demand Avoidance when our child or teen is getting close to their "Threshold of Tolerance" for repeated nervous system activation. When they are in or close to burnout. It's when we start to think, "oh, this is well beyond 'behavior'" and we can observe an impact on basic needs like hygiene, toileting, sleep, safety, and/or eating. At that point we often seek out therapy, but unfortunately it is usually the chronological point in our child or teen's experience when they are *least* able to engage in the demands of the therapies we assume will help them.  This doesn't mean we should never do therapy, but it is important to have an awareness of the need to drop demands and provide autonomy from the very start of the therapy experience to establish felt safety and trust. Pushing an evaluation when the child or teen is resisting may have the cost of undermining felt safety and trust from the beginning, making true progress difficult or near impossible. For example, I was lucky enough to find an incredible occupational therapist in Maryland who "saw" Cooper within five minutes of our first session, even though she had never heard of PDA (nor had I). Upon observing his demand avoidance, she completely dropped the intention to do a formal assessment where he had to complete specific skills and tasks. Instead, she observed what he naturally gravitated towards, which turned out to be a large, multi-layered hammock. At that point, Cooper wasn't speaking or communicating much at all, so she simply said "I can help you get in" (using declarative language, before declarative language had a name!). He ended up spending the ENTIRE session inside the hammock as if it were a womb. Without speaking, she swung him back and forth for nearly the entire hour at different paces. When the pace was too fast or slow, Cooper would groan or make sounds like he was in pain and she would adjust her tempo. Out of my own discomfort (and people pleasing tendencies), I tried to correct him ("Cooper, that's not how we speak to the therapist"), but she said, "It's ok. He's fine," and gently guided me to let it go.  This first "evaluation" at an occupational therapy session five years ago was dramatically different than him standing on a balance beam like a flamingo and following a set of demands so the therapist could create a skill baseline. Instead, she intuited what he needed, established trust, and we started visiting her four to five days a week, as it was one of the only places where Cooper would engage and seemed somewhat happy.  Ultimately, the therapist was able to evaluate him through organic play and observation, rather than with a questionnaire and a checklist during a specific one-hour session like my younger son. Neither is right or wrong or "better," they simply have two different brains.  2) It may not be possible to fully understand or observe the sensory differences of a PDA child or teen if their cumulative nervous system is high or they are in burnout.  As I ticked off the sensory differences checklist for William this week, I marveled at how many of the descriptions I would NOW say "yes" to for Cooper, but that I responded "neutral" to five years ago because I couldn't see anything beyond or behind his fight/flight threat response and his avoidance. For example, when asked: Which of the following describes your child? Check "avoid, seek, mixed, or neutral" Activities requiring strength or force (Proprioceptive)  Speaking or being spoken through amid other sounds or voices (Auditory Processing) Dim lighting, shade or the dark (Visual) I would have marked "neutral" for all of them. When Cooper was in burnout it seemed like ANYTHING and EVERYTHING bothered him - it was a constant state of agitation - so I couldn't discern the unique root causes that began to emerge clearly once his overall nervous system activation came down below his threshold of tolerance.  It was only after more than a year of consistent accommodations through the PDA lens that his overall agitation came down enough for me to identify individual instances of sensory experiences. For example, I never thought he had trouble with gross motor coordination because he was always bouncing off walls and rough-housing, avoiding things that required *any* precision, but then I realized when he started to actually engage in activities that he couldn't climb trees or go on the monkey bars like other kids. He lacked upper body strength and gross motor planning.  He also started shouting at me to "stop talking" when I was in the dining room and he was watching TV in the living room, adding "you are talking too loud, I can't hear my show." I realized then that he is sensitive to sound or at least has trouble with the complexity of sound (my voice in the background + TV sounds).  He started asking for the lights off because it "hurt" his eyes.  And so as his overall activation came down, I started to see the clues of where sensory was playing a role. This was a huge step in my understanding of his brain and internal experience as a PDAer.  3) As a parent, you may need to be intimately involved in the therapy for it to go well with a PDA child or teen.  Unlike my experience this week, sipping coffee while William bounced around doing his sensory evaluation, with Cooper there was never a time when I was "on the sidelines" or not physically involved in the therapy session itself (this is still true, although my husband and I rotate now and we are down to one session a week!). Over the years, here are a couple ways we have needed to do to accommodate Cooper's access to the therapy: Lower the demand by doing things for the child or teen if they need, even if it goes against the traditional logic of "building skills"  When we first started occupational therapy (and still at times when cumulative nervous system is high), we would need to physically support Cooper's engagement with materials because the demand was too high for him to do that AND participate in therapy.  For example, we would often need to help him onto swings and into the hammock, or retrieve things like balls, balloons, or mats that he expressed interest in by pointing, even if he was "physically capable" of doing it himself.  If he spilled something during feeding therapy, we would clean it up for him. We would take his shoes off for him and put them back on at the end of the session (now Cooper just leaves the sessions barefoot and I lower the demand by carrying the shoes to the car on his behalf).  We have even taken this idea to it's logical end, where some days over the years when the demands were too high, Cooper would just sit in the hammock swing and direct me and his therapist to engage in things like basketball competitions and races. He would control the scenario and put the demands on us. This would "equalize" his nervous system (him above us - the Safest of the Safe nervous systems) and help him reset after a tough day at school. Often, the following session he would be back to engaging and playing.  This isn't a complex idea but it is hard to implement because of our resistance and conditioning. As parents and therapists, we often push our PDA kids through the lens of "acquiring skills" and "getting used to something," rather than tuning in to the most therapeutic of all modalities - felt safety, nervous system to nervous system, mammal to mammal. And often for PDA children and teens that comes from feeling "above" the safe person temporarily or getting to control them.   Using strewing and true autonomy, rather than a set of "choices" When we first started therapy with Cooper after moving out of Maryland, we found an amazing therapy place in Michigan where we began working through a more "traditional" format, with laminated pictures of what he could choose to do - e.g. playground swing, then hot-dog swing, build an obstacle course, make slime, etc.  Although this worked at first due to novelty and him engaging in some masking, Cooper started to resist therapy and engagement. We eventually had the "aha" moment that "limited choices within a set we defined" were actually not providing the degree of autonomy his nervous system needed. The therapist and I were inherently "above him" by choosing his set of options, which set off his nervous system and led to avoidance.  Over time, and with a deepening understanding of his PDA nervous system, we abandoned the laminated options, and moved to "strewing" (leaving out some visual cues that he could engage with or not). He would often come into the clinic space and reject all of the strewed objects, but because of the degree of autonomy (which leads to felt safety for a PDAer), he stayed  in his "thinking brain" enough to come up with his own amazing ideas.  4) Your child may need *your* signals of safety as the Safest of the Safe nervous system during therapy even if they really like the therapist.  When I first started researching occupational therapy for Cooper, I had imagined it would be sort of like a doctor's appointment (and many clinics were like this), where we would arrive, he would enter the therapeutic space with the professional or clinician and I would wait in the waiting room and read or scroll-ax on my phone. But what I quickly realized was that any space where he engaged in therapy would need to be a space where he could see and feel my body next to him, and my attention needed to be directed at him to support his access.  There would be no scrollaxing or catching up on a good novel. Rather, I would need to be in it with him, swinging next to him, crawling through tunnels, getting in and out of hammock swings, crunching new foods in my mouth, and non-verbally signaling with my facial expressions and tones that all was OK. This was not a temporary addition to the therapy so that he could "get used to it," but rather was part and parcel to the therapy itself.  Even now - five years into consistent therapy - this is still pretty much the dynamic.  While on day one my non-PDA son was moving through the evaluation as I filled out forms and sipped coffee, after five years into therapy with my PDA son, he still needs full undivided attention from me or my husband during the hour. What has changed is incremental - the luxury of opting out of certain things during therapy if my body feels too tired, using the bathroom in a leisurely manner, or taking the service dog out for a poop, without a huge cost to his Cooper's regulation. But sipping coffee in the waiting room this is not.  5) Finally, even if you are doing sensory integration and occupational therapy for very real sensory differences and challenges, it will be necessary to look at everything through the "autonomy and equality" lens FIRST before the sensory lens.  It makes sense that any occupational therapist would consider the root cause of avoidance or dysregulation to be sensory-based at first, as that is their training. It is also true that the nervous system and sensory systems are deeply intertwined and sensitivities and seeking will fluctuate with the cumulative nervous system activation in the body of your PDAer. However, one of the primary "hacks" that has transformed both my parenting and my work with therapists is helping them see things first through an autonomy/equality/control lens rather than a sensory lens.  For example, much of my son's resistance to things didn't make sense through a sensory lens. Why would encouraging him to do an obstacle course every morning make him LESS regulated? Isn't that sensory input supposed to help him calm down?  But through the autonomy and equality lens it makes complete sense - we were putting expectation and pressure on him to complete a routine of obstacle courses, and cheering him on in a way that his survival brain perceived as threatening because it was a loss of his choice and freedom, which led to resistance and avoidance.  I hope that these reflections help you make sense of your PDA child or teen's internal experience and provide some examples of how therapy might be adapted to support their unique neuroception and nervous system. Feel free to share with your favorite occupational therapist and have a great weekend!