PDA Caregivers, Complex Profiles, Replacement Behaviors, and Being Trauma Informed

What a PDA Profile Is, and What a US Clinician Can Say About It

PDA is not a line item in the manuals we use here. There is no code for it in our ICD categories (the system used to log diagnoses). So in the United States, no one can hand a family a PDA diagnosis.

That does not leave you stuck. A qualified professional can still write what they saw. They can say an assessment was done. They can say the person shows topographies (what the behaviors look like) that match the profile.

Gray also fielded the question she gets most: why does PDA always seem tied to autism? Her answer was about numbers, not biology. Our research samples are already full of autistic participants. So a PDA profile is more likely to turn up there. She was asked about ARFID (a food avoidance eating disorder) and selective mutism (not speaking in some settings) too. Her answer was honest. She is not as knowledgeable there. Anxiety does show up as a comorbid presentation (a second condition at the same time), so some overlap seems likely. Nobody can claim the link yet.

They can make recommendations that are aligned with a PDA profile.

From the talk — B. Kuerine Gray

Demand Avoidance Works as a Response Class, Not One Behavior

Demand avoidance is rarely one behavior. It acts as a response class (behaviors that all do one job). Every behavior in that class serves the same function (what the behavior gets the person). The look changes. The job stays put.

Gray walked it as a ladder. What does the person do to engage? What do they do to delay or avoid? What does it look like when they withdraw or go quiet? How do they refuse outright? What does full escalation look like?

As the behavior goes unreinforced, the intensity climbs a rung. That is the part teams miss. They log the quiet refusal and the broken door as two separate problems. They are one problem at two settings. Sketch the ladder for each learner. Then treat the whole ladder as one class.

So it's not that the function of behavior is changing.

From the talk — B. Kuerine Gray

What Caregivers of Demand Avoidant Kids Are Actually Dealing With

Gray pointed to an article by Nawaz and Speer from January of 2025 on the caregiver experience. The findings match what families tell us. First there is no real understanding of the profile. Then comes judgment. People decide it is bad parenting. Support built for PDA is thin. Good information from providers, schools, and other family members is thinner. Breakdowns pile up at every level.

One newer study shifts the ground. Gray described work by Carlozzi, approved for publishing in October of 2025. She called it the first published peer reviewed PDA study done in the US. It did not test child treatment outcomes head on. It tested caregiver training. The program studied was the Paradigm Shift program, built on awareness, acceptance, accommodations, affirmation, and advocacy.

The numbers are worth carrying. Seventy one parents finished the measures before the program. Sixty finished at the end, about 85 percent. Ninety percent reported they took action and used what they learned. They reported better mental health. They felt able to build a good relationship with their child. The biggest effect sizes (how large a change was) landed on caregiver strain, anxiety, and depression. For the children, the biggest were total difficulties and the EDAQ8 (a demand avoidance rating scale).

So there's a lot of external pressures.

From the talk — B. Kuerine Gray

Designing Caregiver Training That Bends Instead of Breaking

You can drop that five part program straight into BST (teach, model, practice, then feedback). Awareness is the education piece. Acceptance and decision making is the training piece, since it covers how to respond to behavior. Accommodations is the proactive piece. It sets up the room and the moment before anything is asked.

Then build in flex. Do not write a goal that says the caregiver will do X. If the adult has one scripted move, that alone can set off the escalation you are trying to avoid. The learner has a range of responses. The caregiver needs a range too.

Set real expectations while you are at it. After a long school day or a rough night of sleep, nobody is ready for low probability demands. We know that. Write it into the training. Availability slides up and down. Program for a scale, not a switch. That is harder to chart. It also means your training has to be fine grained enough for caregivers to read small shifts.

Buy in is its own job. Gray starts by resetting the caregiver, not the child. Pull them aside after a rough moment and let them come down first. Then ask what the goal was. Ask how they framed it. Ask what happened next. Do not arrive as the expert with the fix, because that lands as condescending. Lead them to their own idea. Offer a minute to collect themselves. Then stand next to them while they try again.

It's really important that given the presentation of the PDA profile, we're building flexibility in.

From the talk — B. Kuerine Gray

Modifying Skills-Based Treatment for a PDA Learner

SBT is skills based treatment (a way to teach safe asking and waiting). It used to open with a loud clap as a cue. Gray noted that FTF, her SBT consultants, have been fading out that clap, and she is glad. For a learner with hearing loss, that audible cue may still earn its place. For a PDA profile it can trigger an anxiety response on the spot. In one case it stalled the whole program.

The second stall point looked like success. The learner stopped asking and just complied. Tears running down the face, task done. That is a fawn response (giving in to keep the peace). It buys quiet now and bills you later. Ratio strain (too much work per payoff) builds up. You then see behavior come back at higher rate, longer duration, or worse intensity.

The fix was rehearsal, not pressure. Sometimes things are hard, and it is fine to say I am not ready. Practice trials came at times the learner could not predict. The point was never getting the chore done. The point was getting reps at declining.

It is okay to advocate at the onset of any demand presentation.

From the talk — B. Kuerine Gray

Replacement Behaviors That Allow More Than One Right Answer

Standard practice teaches one FCR (one taught way to ask), often some version of my way. With a PDA profile, teach several. Then count the intent. Say a learner tells you I am not ready. If you answer so you want to play your way, you just placed another demand. You also walked away from the point of the program.

Check your threshold for a correct response. Are you shaping toward behavior chains that fit the moment? Or are you waiting on one rigid answer where X must equal Y? Wait for the rigid answer and you can lose the learner.

Choice is the cheapest change you have. The task may be fixed. The order rarely is. They can pick what comes first. They can pick which steps get done together and which get done alone. And when things go sideways, planned ignoring (not reacting to the behavior) will not bring this learner down. Use universal protocols (steps you honor with everyone). Name the feeling. Offer to work it out together. The intervention is still evidence based. Only the delivery changed.

It's not about reinventing the wheel as far as, oh, we now need to have all these new interventions just for PDA.

From the talk — B. Kuerine Gray

Co-Regulation That Does Not Land as One More Demand

Here is the trap. Telling a dysregulated learner (someone overwhelmed and out of sync) to calm down is a demand. Any cue you present for regulation is a demand. So the ask meant to settle things can push the escalation higher instead.

Gray embeds the demand inside her own modeling. She says out loud that she is overwhelmed and needs a break. Then she labels what is happening in her body. My body feels fast. My breathing is fast. I am talking louder than I usually do. Then she acts on it. She picks up a fidget. She paces the room. Labeling internal events gives the other person a way in.

Watch for the small move. A step toward you counts. Attending to you counts. Then take the pressure off rather than praising compliance. Thank them for helping you feel better. Say your body is slowing down. Ask if theirs is too. If they say they hated it, ask what does work and go do that with them.

One more thing worth hearing. We write self regulation goals fast and early. Regulation gets learned with another person first. That means tolerating co-regulation (calming down with another person), accepting it, asking for it, and finding it worth having. Do not push past that step.

And the minute there's that initiation, you can reinforce that behavior.

From the talk — B. Kuerine Gray

Staying Trauma Informed Means Watching Your Own Behavior Too

Gray closed with a short self check. Before you respond, ask whether this is a PDA thing. Is this a reaction to a real or perceived loss of control? Then ask what your end goal is. If the goal is the outcome, the path is open. You can shape toward it. You can change how you present it. You can add accommodations. Last, ask whether your methods lower anxiety, raise autonomy, and cut harm.

Measure over the right window. Inside one week you will see ups and downs, because people have ups and downs. Look at the trend over time and expect steady progress. She also urged providers to look inward. What are your own triggers in session? She has watched clinicians slide into power struggles without noticing. The tone changes. The face changes. Working with demand avoidance can push buttons that society taught us to call disrespect.

Progress can be slow, and that is not always failure. In one case with severe food refusal, the child had washed out of two feeding programs. Those programs strapped the child into a chair until they ate. It took six months of pairing (building good feelings with the setting) before any food demand was placed. Staff asked why they were doing so little. Today that child eats fruits, proteins, and snacks, drinks water, and is on the growth charts. Outcomes varied across the other cases she shared. One learner now travels and goes on outings, with just one major escalation in six months and no self injury. A young adult now texts to advocate and works with minimal support. Another learner finally uses a device to decline.

When we are engaging in sessions, um, we are responsible for being in control of our own histories and being able to change our own patterns of behavior to mitigate harm when working with others.

From the talk — B. Kuerine Gray