The first time a clinician asked me, "Have you heard of PDA?" I was stumped. I know an acronym for PDA, but I assumed they were referring to something else. Once I learned its meaning, I began researching and made it a personal mission to educate others around me. I was surprised to discover this condition existed in the clinical world, yet only a few clinicians I spoke to had experience with it throughout their careers.
So, what is the PDA I'm referring to? It's called Pathological Demand Avoidance, a profile primarily identified within the Autistic community. Research on this profile has primarily been conducted in other countries such as the UK, Australia, and Canada, with limited resources available in the United States. After speaking with elementary school counselors, I found that more than half of them had never heard of this profile, let alone had resources to support these children.
In Australia, a psychologist defines PDA as, "A rare behavioral phenotype of Autism Spectrum Disorder characterized by an overwhelming need to resist or avoid demands, often leading to sensory overload, meltdowns, and outbursts" (Ratnayake). PDA is triggered by situations where a child feels a loss of control or autonomy, leading to extreme anxiety and behavioral responses.
Humans have an innate defense mechanism called the flight/fight/freeze/fawn response that helps individuals protect themselves in dangerous or threatening situations. For an individual with PDA, their flight/fight response is constantly activated, so when they are given a demand their brain perceives that as a “threat” and activates their fight/flight response which can result in the individual screaming, panicking, and sometimes physical aggression.
Let's first understand Autism, ADHD, and the concept of a "profile." Autism Spectrum Disorder involves challenges with verbal and non-verbal communication, social skills, behaviors, and emotional regulation. This description is broad and generalized, and the specific challenges vary among individuals. For an introduction to Autism Spectrum Disorder, visit [link].
Attention Deficit Hyperactivity Disorder (ADHD) shares traits with Autism but specifically involves dopamine deficiency leading to executive function challenges (i.e. difficulty completing tasks). For more details on ADHD, visit [link].
When diagnosed with these conditions, individuals may also be categorized into a "profile," indicating specific traits within their diagnosis. For example, a child could have Autism Spectrum Disorder with a PDA profile, indicating they meet Autism criteria but struggle particularly with autonomy and demand processing.
While previous research suggested PDA was exclusive to Autism, recent studies indicate it can also be found in cases of ADHD.
Now, let's delve into PDA specifics: What are its characteristics? What do treatment plans involve? Where can you find more information?
The term "Pathological Demand Avoidance" itself suggests that any request or instruction (i.e., a demand) can trigger a flight or fight response in a child. The triggering requests are often mundane, such as:
· "Can you brush your teeth?"
· "Put on your shoes; we need to leave soon."
· "Clean your room before playing video games."
· "Stop yelling at your sister."
· "Put your dishes in the sink."
These are everyday demands in many households but can provoke intense reactions in a child with PDA.
PDA can be triggered when a child perceives a lack of autonomy or fairness which can affect many areas of their lives such as home, school, and relationships. For instance, let’s say the class receives a reward for good behavior, the child will predict what the reward will be based on others around them. Their teacher passes purple pencils as a reward, so the child thinks to themselves, “I will get a purple pencil,” but then receives a blue pencil. The child can perceive this as “not fair” and will be activated.
The child can be activated another way as well using the same example. The teacher can announce, “You all earned a reward for good behavior today,” and proceeds to pass out the pencils. The child may have predicted, “Oh yay the reward is probably erasers!” so when they are handed a pencil they can also be activated due to not receiving what they initially predicted.
This behavior often gets misconstrued as selfish or entitled, when in reality the child is having difficulty verbalizing their stressors in that situation. This population already struggles with social cues, communication, and emotion regulation which can result in physical and mental distress, however, when PDA is also experienced it can heighten their already-difficult struggles. The common theme among those with PDA is that they do not enjoy the feeling of being out of control in an environment, so this population also exhibits behaviors related to obsessive compulsive disorder (OCD) which stems from their anxious response.
What support do children with PDA need to succeed?
Language
Language is an important factor to consider with this population specifically due to how they perceive demands. The first step is to focus on language and how we are communicating.
A child could become activated if a parent states, “Go put on your pajamas,” due to the demanding nature of this request, however, if we change our language to, “Hey, your pajamas aren’t on yet, do you know where they are?” we are removing the demand, and instead giving the child a task and question that they can confidently answer.
Another skill to utilize is to change the language of a demand into a game: “I wonder if I can put my pajamas on faster than you, let’s race!” Now the parent has turned this demand into a game, taking away the task of the demand and making it fun. Turning tasks into games also helps the individual’s brain activate a chemical called dopamine, which aids in our drive and motivation to complete tasks.
Overall you want to use language to successfully communicate, and doing things such as having a simple conversation with your child can go a long way, especially in the events that they feel something has been done that is not fair. Most adults want to quickly state things like, “life isn’t fair, you need to get used to it,” which truthfully will just trigger the PDA child even more. Instead you want to sit down with them and ask them why they’re upset, what would make the
situation better, and if there isn’t an immediate solution you can problem solve how to avoid this situation in the future. If a child has difficulty verbally communicating you can also use things such as images the child can point at, books, or writing.
Be a Team
A child with PDA will respond better to rewards, consequences, and plans if they are a part of making those decisions, and visual cues will help your child be successful in these areas. Doing things such as making a visual cue of tasks your child is expected to complete daily on their bedroom door takes away the demands and can result in the child successfully completing their tasks. Sit down with your child and make a list that looks like this:
1. Take off PJs
2. Put PJs in hamper
3. Put on new clothes
4. Turn off light, go to bathroom
Then, in the bathroom you’d have another set of “to-do’s” for your child:
1. Put toothpaste on toothbrush
2. Wet toothbrush
3. Set timer for 2 minutes
4. Brush teeth until timer dings
5. Rinse off toothbrush, put in cup
6. Go to bathroom
7. Wash hands
8. Go to kitchen
Once your child completes their morning tasks they will head to the kitchen where you can have another set of plans posted:
1. Put on shoes
2. Eat breakfast
3. Get backpack
These are just examples, you would want to make a realistic list for your child since every child has a different array of skills they can complete on their own. Here is an example of a task chart, you can make these on your own, have your child write/illustrate them, or even order task charts from websites such as Etsy (resources below!).
The same goes for rewards and consequences, you can make a visual chart that goes on a common area of the home that outlines rewards your child can earn for completing tasks/demonstrating positive behavior, as well as consequences they can earn for negative behavior.
Word of caution: Consequences are not as successful for PDA kids as it can activate them and cause their emotions to heighten even further. Taking things away, threats, removing them from the rest of the group, etc are all examples of things they will identify as “not fair” and as a threat. I encourage parents to make a list of “needs” versus a list of “consequences:”
What does your child need when they are activated? Things such as: a hug, a conversation, an ice pack, a joke (humor has been found to be successful with these kiddos! Break up the tension with a joke!), or squeezing a stuffed animal. Sending your child to their room, taking away their stuffed animal, telling them to go to time out, etc. are all examples of demands and lack of autonomy.
Make a visual that your child can point to when they are emotionally disregulated showing a parent giving a hug, a child squeezing their stuffed animal, etc. Then when you show them this chart it offers them the opportunity to make the decision for what they need instead of being told what they need or taking things away without their consent.
These skills also transfer over to the educational environment. Children with PDA already have predisposed struggles in school due to social deficits and educational deficits, so communicating with your child’s school so they can provide the language and coping skills accommodations can greatly benefit your child. The child can have a visual on their desk with their needs that they can point to when they are activated, such as “go to bathroom,” “take a break,” “go to the calm down area,” “read a book,” “drink some water,” which can also help the teacher and staff members provide their student with useful coping strategies, and the student gets to make the choice which will increase the odds of a successful outcome.
Understanding and supporting children with PDA requires tailored approaches that respect their need for autonomy and manage demands effectively. This was just an overview of this profile, I have included references and resources below if you are interested in learning more regarding Pathological Demand Avoidance. I encourage fellow clinicians, educators, parents, and overall anyone that works closely with children to have a basic knowledge of this personality type so we can provide our children with the tools they need to succeed.
If you have any questions, comments, or concerns please feel free to reach out to Kelly directly at klaporte@napervillecounseling.com
References
Bence, Sarah. “Pathological Demand Avoidance (PDA) in Autism.” Verywell Health, Verywell Health, 25 Sept. 2023, www.verywellhealth.com/pda-autism-7963757.
Ferguson, Sian. “Pathological Demand Avoidance and ADHD.” Psych Central, Psych Central, 28 Aug. 2023, psychcentral.com/adhd/pathological-demand-avoidance-adhd.
Hopkinson, Terri. “PDA (Pathological Demand Avoidance) Explained - Resource Guide.” AutismBC, 2024, www.autismbc.ca/blog/resource-guide/pathological-demand-avoidance-pda-explained/.
Identifying & assessing PDA. PDA Society. (2023, June 8). https://www.pdasociety.org.uk/what-is-pda-menu/identifying-assessing-pda/
Miller, Caroline, and Cynthia Martin. “Pathological Demand Avoidance in Kids.” Child Mind Institute, 22 Mar. 2024, childmind.org/article/pathological-demand-avoidance-in-kids/#:~:text=What%20is%20pathological%20demand%20avoidance%3F,seen%20in%20people%20with%20autism.
Ratnayake, Prishini. “What Is Pathological Demand Avoidance (PDA) and How Can We Address It?” The ACT Group, 5 Oct. 2023, theactgroup.com.au/pathological-demand-avoidance/.
Pathological Demand Avoidance Resources
Books:
Podcasts:
https://neurodiversitypodcast.com/home/category/PDA
https://www.pdasociety.org.uk/resources/podcasts/
https://open.spotify.com/show/21HXIiAXHRanUPvItBSeBb
Examples of Visual Aids: