PDA. A need for deeper understanding.
Pathological Demand Avoidance or Pervasive Demand for Autonomy.
After almost 15 years in ABA, I have encountered a few clients who did not respond to “traditional ABA” - prompting, clear directions, etc. These clients exhibited a heightened reaction to seemingly simple requests from others - extreme refusal, inconsistent triggers, potential for aggression or other potentially harmful or destructive behaviors. They learned quickly, but what they grasped the fastest was how to say or do things to trigger others, make them uncomfortable, or to make the interaction so difficult that the other person would back down from the request. Although they had a relatively large vocabulary, they did not use it to request the things they needed or wanted, what they were thinking or how they felt. The behaviors were always intense but not always consistent with triggers or what they looked like. The behaviors were always intense but not consistently linked to specific triggers or appearances. In fact, issues such as school refusal, reluctance to complete grooming or medical needs, and difficulties in interactions with others often worsened over time. These behaviors frequently caused other family members to tread carefully, never knowing what might trigger one of these behavioral episodes, which could last anywhere from a few minutes to several hours.
Ultimately, these were children with good hearts—kind children who wanted to connect with others but did not know how. They were very intelligent kids who struggled to use their words to communicate basic needs, such as feeling tired or not wanting to do something. Instead, they resorted to using swear words or insults, discussing taboo topics like guns or killing people, or engaging in other extreme behaviors to express themselves. Over time, these children might learn that such behaviors are effective, perhaps even more so than saying they feel uncomfortable, need help, or desire a connection with another person. These are children who were discharged from ABA therapy due to a lack of progress over time, yet their families still lacked clear answers about what was happening with their child and what might help reduce these behaviors. Much like an egg, hard on the outside but soft and gooey on the inside, these children used the behaviors as a way to protect themselves and their feelings, to distance themselves from others. If they did not allow others in, they could not get hurt or disappointed.
One of my guilty pleasures (where I also learned I may have have ADHD) , is TikTok. One of the significant benefits of TikTok for the neurodivergent community is the connection and understanding shared among people experiencing similar challenges. One topic that appeared on my ‘For You Page’ was PDA, or Pathological Demand Avoidance, also known as Pervasive Demand for Autonomy. After diving deeper into the subject, despite my initial skepticism, things suddenly began to make sense. The children who did not respond well to ABA sessions, whom I could never quite figure out, were experiencing something similar. The similarities where that their behaviors might stem from accumulated demands (instead of one specific antecedent), that they may appear "high functioning" to others, can be very different in minute to minute or between different settings, and that many physicians and psychiatrists were also stumped.
I had several clients on my caseload who appeared to exhibit the traits associated with PDA, as outlined by PDA North America (https://pdanorthamerica.org) and the PDA Society (https://www.pdasociety.org.uk), in addition to various anecdotal reports. Utilizing suggestions from these sources, I was able to develop effective intervention plans. These behaviors are complex, but with specific approaches, we observed reductions in potentially dangerous or harmful behaviors, a decrease in the use of inappropriate language, and an increase in the desire to interact with others. PDA is not a specific diagnosis in the DSM-5, making it challenging to discuss and to persuade others of its validity. However, after working closely with many of these families, I believe it is a very real issue for them.
The strategies outlined below are not an exhaustive list, and I encourage families to consider whether they are appropriate for their unique situations. All of these strategies are based on Applied Behavior Analysis (ABA) techniques that I have incorporated into various behavior plans, although they are not typically the first line of support for an initial assessment. I do believe that a Board Certified Behavior Analyst (BCBA) should recognize the potential existence of PDA. It has taken years of refining behavior plans, inadvertently reinforcing certain behaviors, and experiencing challenges such as being expelled from multiple schools and dealing with broken bones or household items for me to arrive at the basic plan presented below.
As with all behavior plans, it must be tailored to the individual, the environment, and the function of the behavior. I am still learning from others who have more experience in this area, so this list will continue to evolve. It is also important to note that these strategies may not work for everyone or for every behavior. However, the strategies provided below are generally safe for any child if you suspect that PDA may be a factor while you seek additional support and further understanding.
These strategies are intended for families who need help now and feel they may not make it to tomorrow without being validated in some way or having something new to try. These families have consulted numerous experts, including medical doctors, psychiatrists, BCBAs, and therapists, yet none have been able to help or understand their situation. The key element in the ideas below is to limit direct demands, instructions, and expectations while also supporting the learning of functional replacement behaviors, such as asking for help or recognizing that it's okay to request a break. It is important to conduct additional research and consult with experts before assuming that it is PDA and to gain a better understanding of the root causes of the behaviors associated with PDA. However, it is essential to provide strategies to the families who need them most.
What to do to help prevent the behavior from occurring:
Offer choices whenever possible
let them choose between which two activities to do first. If they want to sit or stand while working at the table. If they want to use a pencil or pen to write. If they want you to read it to them or if they want to read it themselves.
By offering choices, you are providing some boundaries but also showing the child what is possible in the situation. Remember, these children often have large vocabularies but will not request for the things they want or need - help, a break, more time, etc.
You are also providing an opportunity for them to practice functional communication - effective communication to meet their wants and needs with engaging in potentially harmful behaviors. Over time, the child may become more independent and spontaneous with their language once they know what is possible and how to ask for it.
Limit direct instructions and implement a low-demand lifestyle whenever possible
To my understanding, the foundation of PDA is that any type of demands—particularly the collective accumulation of demands that disrupt the nervous system—can lead to behaviors. Changing your approach and the resulting environment can significantly impact the reduction of these behaviors.
Placing direct instructions such as “clean up your toys” or “get dressed” can be perceived as demands, which may trigger negative behaviors in individuals with PDA. If the toys need to be cleaned up, consider modeling the cleanup process; the child may choose to join in. Additionally, you can make an indirect statement like, “The puzzle pieces are left out. If we lose a piece, it will be harder to complete the puzzle next time.” This approach communicates both the task and the rationale behind it without issuing a direct instruction, enabling the child to understand what needs to be done and the consequences of not doing it.
A mother I work with has found great success by simply placing items next to her children. Instead of telling them it is dinner time, she places the plate next to them. They recognize that it is dinner time and begin to eat without the need for the phrase “dinner time.” She also brings their vitamins or medications to them, places them on their tongue, and then offers a water bottle to help them swallow. This approach ensures they take their pills without the demand of “take your medicine.”
These suggestions may seem extreme to some, but for a family with one or more children with PDA, reducing the overall demands of the day may help maintain flexibility and endurance for other responsibilities, such as school or leaving the house.
If a child is experiencing complete burnout, it will take time for them to return to their usual self. Reducing demands is a significant part of helping to alleviate burnout.
Modeling language without expectation
One of the reasons I believe that "traditional ABA" does not work with this group is that prompts are perceived as an additional demand beyond the initial request. If we ask a question and then prompt the answer, it effectively becomes two demands on the child. Considering that behavior often results from accumulated demands, it is understandable why ABA may not be effective for these children. In a 2-3 hour session with one person constantly following them, there is a significant amount of demands and attention, especially if they are unable to independently request space or a break.
Neurodivergent individuals are often aware of their surroundings, even if it appears they are not paying attention. This can be observed in a child who is walking at the back of the classroom yet is still able to answer the teacher's questions during circle time. Similarly, a child who "only understands English" may nonetheless comprehend instructions that their parents give to their sibling in the family's native language.
If you hand something to your child and they say, “I hate you, Mom,” you can respond in a neutral tone and expression by saying, “Thank you, Mom.” By not providing additional attention or reaction, you demonstrate that their response will not change your behavior. Some extreme behaviors may arise from a desire to connect with others while not understanding what is and isn’t socially acceptable. Modeling appropriate responses and expectations can be very effective over time. By limiting your overall reaction and demands, the child may likely begin to use “Thank you, Mom” instead.
Model making mistakes and problem solving without expectation
As mentioned above, these children often appear tough on the outside but are soft on the inside; they do not want to seem weak, incapable, or "dumb," and they will resort to behaviors that allow them to escape a demand rather than asking for help, inquiring about how to do something, or admitting that something is difficult for them.
If you make a mistake, such as dropping a drinking cup and spilling water, remain calm and narrate your actions. “Oops, I dropped the cup. That’s okay; nothing is broken. I’ll get a towel and wipe it up—no problem.” Children are always observing their environment, so demonstrating how to solve simple problems while remaining calm can be an effective teaching strategy.
If you forget to do something or mess up, acknowledge it! Recognizing that neither you nor others are perfect, and that you can address situations instead of merely avoiding them or blaming others, is important.
Pick your battles and be flexible
Going to school, soccer practice, church, or scouts can be difficult for many individuals with PDA. The demands of leaving the house—stopping their preferred activity, getting dressed, putting on shoes, thinking about any unknowns, remembering anything they need to bring, and fulfilling any of your additional requests—can be overwhelming, especially if the child is already dysregulated. This challenge can be compounded if the activity or location is one they are not eager to attend. Furthermore, once the activity begins, there are social demands to navigate, along with numerous steps and societal expectations that must be followed.
There are some things that may be non-negotiable, such as taking medication, showering, and refraining from being violent towards others. However, it is important to understand that these can also be demands. On days that are more difficult than others, reduce the demands to just those non-negotiables. This may require you to change your plans, but ensuring that your child feels safe and secure is crucial. On more challenging days, you may need to take additional steps for them or provide extra support, and that is okay! Children often struggle to communicate their feelings from one moment to the next, so you need to be aware of potential triggers and adjust accordingly.
Some individuals with PDA may thrive in the community; however, the cumulative weight of demands continues to build. The release of this buildup is likely to occur the next time the child feels comfortable—whether at home, with their parents, or in a similar environment—where they can be themselves without fear of judgment. If this is happening to your child, consider using these strategies once they get home.
Limit corrective feedback and reactions to their behaviors. Be aware of your behavior.
Over time, as the child’s behavior leads to escape from demands, more attention, or access to their preferred items, it will continue.
The following is a pretty common pattern of behaviors with demands
Tony is arguing with his son, David, about cleaning up. This delay pushes back the start of David's cleaning, which he perceives as a victory. As the argument continues, David is aware that it is almost time to pick up his sister from school, prompting him to resist the instruction further. At that point, Tony tells him that he only needs to clean up two items. With this adjustment, David has effectively postponed the start of the cleaning activity and lowered the overall expectation—from cleaning all his toys to just cleaning two items—further reinforcing his behavior of arguing with his father. The argument may persist even after Tony reduces the expectation to two items, and by the time they need to leave to pick up his sister, the situation has not improved. When they return home, Tony has forgotten about instructing David to clean up his toys. By engaging in the argument, David has successfully avoided cleaning altogether.
Arguing can also be reinforced if he wants to continue playing his Switch instead of cleaning up as he was able to still play his switch while the argument was happening.
Or perhaps by engaging in his argument, he gained attention from Tony. Tony had been working all day, and David wanted to see him. David engaged in the argument to connect with his father—attention is attention, whether it is “good” or “bad.”
This is why it is important to pick your battles and be flexible. If you are not in a position to support or help with follow-through, do not make the demand. PDA individuals tend to be very skilled at identifying triggers for their parents, using specific actions or words that their parents really dislike, especially when they are seeking attention or connection.
Priming
The unknown is often uncomfortable for neurodivergent individuals. Priming is a strategy that helps the person understand the activity or situation before it begins.
Priming can involve reminders of expectations or upcoming transitions, presenting social scenarios and exploring them before the activity, viewing pictures, menus, or videos of the locations you will be visiting, practicing a conversation before arriving at school, or utilizing any other method to aid in the transition and completion of the activity.
Successful priming strategies may look different for each child and each situation
Some neurodivergent individuals perform best with timers and reminders, while others find them quite bothersome.
Some neurodivergent individuals perform better when informed about routine changes in advance, while for others, prior knowledge may lead to increased stress and worry, resulting in more behavioral issues.
Vocabulary often appears to be much more advanced than it actually is. You may need to use very simple language, visuals, or model appropriate behaviors to support your child. They may also say they understand when they do not, as they may not want to appear less capable than others.
Again, they are likely listening to more than we realize and may appear not to be paying attention. If the priming is effective, you will notice your child becoming more comfortable with the activity. With each subsequent attempt, it should become easier; however, remember that progress is not always linear. Some regression may occur, especially if there are other changes in their life.
Use humor, novelty, role play
Do not take yourself too seriously or adhere to strict expectations. Children with PDA may struggle with motivation, so using humor and novelty can be very beneficial. Sing a funny song, do something silly, use the voice of their favorite character, provide inexpensive toys from the dollar store, and allow them to listen to music or eat their snack while engaging in a non-preferred activity. All of these strategies can help reduce the perceived demands and increase motivation
Role-play allows children to assume different characters. By taking on these roles, they may feel more confident and less anxious about making mistakes, as it is the character they are portraying and not themselves. Incorporating role-play during playtime can be beneficial for modeling appropriate behaviors, problem-solving skills, and social skills without any pressure. Similarly, video games have been successful for some of the children I work with, as they engage with the character in the game.
Focus on listening to their words, don’t push
After you have modeled functional communication and your child is effectively able to express that they need more time, do not want to do something, dislike something, or need something, it is important to listen to them.
One of the biggest things you can do for your child is to listen to their words without judgment or pushing them further. This will build trust between you and help prevent undesirable behaviors from occurring.
They were hesitant to attend their friend's birthday party, yet they still went. Halfway through the event, they approached you and expressed a desire to leave. It's clear they are feeling overwhelmed and need to return to their safe space. Guilt-tripping them into staying longer will not benefit anyone present. Instead, be glad they had the courage and energy to attend in the first place and celebrate that.
You are helping them with their homework and are almost finished, but they say they need a break. It is much better to take a quick stretch break and return after a few minutes than to push through the last few problems just because you’re almost done. Pushing them beyond their limits, especially after they have communicated their wants and needs to you, will only result in negative behaviors for them and frustration for you.
Do not try to teach while they are escalated
As with anyone, your child’s rational thinking brain does not take the lead when they are overwhelmed and exhibiting certain behaviors. During these moments, they are not in a position to understand your corrective statements, negotiate, or compromise. Furthermore, any form of speaking or reacting from you or others may prolong these behaviors.
During a behavior escalation, remain calm in facial expression and body language. Use neutral tones when speaking if necessary but it is best to just stay quiet. You may be able to redirect the child to a more appropriate activity like jumping on the trampoline vs running around the house but the more boundaries, demands, and expectations we play, the longer the behavior will likely go on. They may want to go to their room or another quiet, safe place or engage in sensory seeking or sensory avoiding behaviors to help calm down.
To help reduce the behavior, we need to return the nervous system to normal; therefore, being supportive and maintaining a calm presence will be beneficial.
You can debrief with your child after they have completely deescalated. Keep in mind that this may take a few hours or even a few days. Avoid presenting it as a lecture, as this may likely re-trigger the behavior. Instead, use this time to talk with your child, understand their thoughts and feelings, and explore how you might better support them next time.
PDA is a condition that we are just beginning to understand. Most of the literature on PDA indicates that ABA will not be effective for these children; however, I have found success using the strategies mentioned above, as well as others identified while working with individual children and families who are likely experiencing PDA. These families are often left without answers or guidance, so the ideas presented above are meant to serve as a starting point. If something does not work for your child, that is perfectly fine! Each neurodivergent individual is unique, and triggers can vary from day to day.
For families dealing with PDA, the experience is very real and isolating. If you believe your child may fit the PDA profile, there are numerous social media accounts that connect these families with one another. It can be very isolating not to understand your child, but you should not feel obligated to fit them into the mold of “what a child should be.” What matters most is that you are supporting your child and that they feel safe and are making progress.