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When Following Instructions Feels Like Death: How School's Hidden Curriculum Creates Pathological Demand Avoidance
What looks like defiance is often a nervous system fighting to survive

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How School's Hidden Curriculum Creates PDA

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How School's Hidden Curriculum Creates PDA

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When Following Instructions Feels Like Death: How School’s Hidden Curriculum Creates Pathological Demand Avoidance

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What looks like defiance is often a nervous system fighting to survive

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Mary is an ND-affirming PDA expert. She offers many online support groups, as well as in-person services in Cherry Hill. 

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Mary is an ND-affirming PDA expert. She offers many online support groups, as well as in-person services in Cherry Hill. 

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Welcome back to Instagram. Sign in to check out what your friends, family & interests have been capturing & sharing around the world.

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Demand avoidance: possible underlying causes

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Demand avoidance: possible underlying causes

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Not specific to PDA

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Pda | Tiggertraining/bridging The Neurodivide | England

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Pathological Demand Avoidance, (PDA), if you want to know more, have a look here.

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Guest Blogger: Helen Edgar (Autistic Realms) Nicola Reekie recently presented a webinar, 'Beginnings, Endings and The Elephant in the Room' for which is available here. Nicola discussed how it is often not just the child in the family that may be Autistic/PDA/ADHD (or any other...

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My Experience of Pathological Demand Avoidance (PDA)

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Teen gives a really good description of their PDA

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My Experience of Pathological Demand Avoidance (PDA)

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PDA North America Support & Resources for Individuals, Families, and Professionals Pathological Demand Avoidance Recognized as an extreme avoidance of everyday activities due to heightened anxiety, PDA is a newly emerging profile that falls under the autism spectrum.

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A brief biography of me and why I'm running a page about pathological demand avoidance.

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Low-Demand Parenting [Diekman, Amanda] on Amazon.com. *FREE* shipping on qualifying offers. Low-Demand Parenting

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Neurodivergent Insights blog post about low demand parenting and PDA

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Neurodivergent Insights blog post about low demand parenting and PDA

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Parenting can be a wild ride full of constant adjustments and tweaks. My husband and I used to joke that it was a "co-evolutionary arms race" as we tried to keep up with our daughter's changing needs. We have two doctorates (mine in clinical psychology, his in education). With my background in clinical psychology and my husband's in education, we thought we had all the tools and strategies to handle any challenge that came our way. But sometimes, nothing seemed to work, and we found ourselves at a loss for how to parent our daughter. We would often ask ourselves, "If we can't figure this out with our backgrounds, who can?!"

We quickly realized that our bright, intelligent daughter could sense when we were trying to influence her into a specific response. Rewards and threats of consequences only made things worse. As the stay-at-home parent, I found myself getting caught up in her meltdowns and feeling like a terrible mother. My nervous system was constantly on edge, and I struggled to understand why parenting felt so incredibly hard.

When she was first diagnosed as Autistic, it helped explain some of our struggles, but we still felt like there was something missing. That's when we learned about PDA, which became the missing piece of the puzzle in understanding our child. Through our exploration of PDA, we discovered the concept of low-demand parenting, which is often associated with PDA advocacy and parenting groups. But before we dive into low-demand parenting, let's first unpack what PDA is and what it isn't.

There is a lot of information in this article (my Autistic brain just kept going with it, feel free to save it for later in taking in the pieces of information that feel useful).

What is Pathological Demand Avoidance (PDA)

Pathological Demand Avoidance (PDA) is a term that has historically been used to describe a profile of autism. However, an increasing number of individuals identifying with this profile are beginning to use "Pervasive Drive for Autonomy" instead (coined by Tomlin Wilding), better capturing the underlying core need. Demands are only a problem insofar as they threaten autonomy, and for people with PDA, autonomy equals safety. Any threat to that autonomy is perceived as dangerous, triggering a fight, flight, or freeze response.

The neurodivergent nervous system tends to be more rigid, meaning it more easily flips into a stressed state. In the case of PDA, there is almost no window of tolerance, so simple, everyday demands like "put on your shoes" can lead to big emotional reactions.

People with PDA can vacillate in their mood. On the one hand, they can be absolutely charming and light up the room (particularly when they have control and autonomy). On the other hand, when they feel threatened, they can appear excessively controlling and dominating, engaging in ways that may feel manipulative to others. Understanding the neurobiology behind PDA can help parents and caregivers respond with more attunement and empathy rather than frustration and confusion (and for PDAers it can lead to greater self-compassion).

Characteristics of Pathological Demand Avoidance (PDA)

Pathological Demand Avoidance (PDA) is not yet an official medical diagnosis, but there are several core characteristics associated with it. While demand avoidance is the most widely discussed characteristic of PDA, other traits cluster with the PDA profile, which can lead to confusion for parents and healthcare professionals. The PDA Society in the UK has outlined the following core characteristics of PDA:

Resists and avoids the ordinary demands of life

Uses Social Strategies as part of their avoidance

Appears sociable on the surface

Experiences excessive mood swings and impulsivity

'Obsessive' behavior, often focused on other people

Appears comfortable in role play and pretend, sometimes to an extreme extent

Play can appear imaginative

When they involve others in their role-play, children with PDA are usually very controlling of the themes, roles, and dialogue

Other features of PDA include masking and strengths such as a strong sense of justice and fairness, independence, charisma, creativity, compassion, humor, imagination, and tenacity. Individuals with PDA face a great deal of misunderstanding and are frequently misdiagnosed with behavioral disorders. This can lead to blaming being placed on them and the parents for their explosive meltdowns and responses to autonomy threats, leaving parents feeling helpless and confused after trying a variety of therapies, medications, and parenting tactics.

In order to support individuals with PDA effectively, it is crucial to recognize and understand the characteristics of this condition. However, PDA can perplex many clinicians as it often goes unrecognized and can complicate the identification of autism due to its masking or influencing the presentation of Autistic traits.

Why Does PDA Cause Diagnostic Confusion

Dr. Donna Henderson, an expert on non-stereotypical presentations of autism, has identified several clinical characteristics of PDA that contribute to its diagnostic confusion. She explains in her blog post, "PDA: Not what you think it is!" :

"These individuals tend to have better eye contact and better social reciprocity than most with autism, and they can often appear to be socially typical. Their relatively good superficial social skills often make people wonder whether or not they are really on the autism spectrum (but in my experience, they are)."

Additionally, PDAers tend to be more socially savvy than most people with autism, and they can use sophisticated strategies (often perceived as manipulative) to regain a sense of autonomy. Furthermore, the presentation of PDA can vary depending on the context, making it difficult to diagnose. As Dr. Henderson notes,

"Individuals with PDA can do really well for short periods of time and then (seemingly) all of a sudden stop doing well (Jekyll and Hyde), which makes it look like their behavior is entirely volitional (it isn't)."

This inconsistency can lead to misdiagnosis, particularly when the child is able to mask well in certain settings. For example, "Some PDAers only struggle in one setting. So, they might do well at school (camouflage) and then completely fall apart at home. Conversely, they might do well at home (if there are low demands) but fall apart with the demands of school."

Finally, PDAers may not exhibit the same need for a routine that is characteristic of autism. Dr. Henderson explains, "PDAers may not do as well with routine and seem to need more novelty than most autistic individuals." These differences in presentation make PDA a perplexing case for many clinicians, leading to misdiagnosis and misunderstanding of the condition.

Parenting PDA

Parenting a child with PDA can be a challenging experience, as demands and requests can trigger a threat response in the child. With hundreds of demands placed on children each day, parents may inadvertently contribute to their child's stress and anxiety. Everyday tasks like brushing their teeth, getting dressed, and answering questions can become a source of conflict and emotional distress for children with PDA. And when they go to school, they may face even more demands that exacerbate their difficulties. Interestingly, a significant percentage of children with PDA do not thrive in traditional school environments, further complicating the situation for parents.

Given the unique challenges associated with this condition parenting a child with Pathological Demand Avoidance (PDA) can be a daunting task. PDA is characterized by an overwhelming sense of anxiety and avoidance when faced with demands or expectations. Traditional parenting techniques that rely on firm boundaries and consequences may not be effective for PDA children. This is where Low Demand Parenting comes in.

What is Low Demand Parenting?

Low Demand Parenting is a low-arousal approach that prioritizes reducing stress and anxiety levels in children with PDA. It is based on trust, flexibility, collaboration, and a balanced approach to demands. It involves adapting the environment and activities to the child's unique needs and preferences and allowing the child to take the lead in their play and activities. As Amanda Diekman, author of Low Demand Parenting explains it: "Low-demand parenting allows you to drop the demands and expectations that are making family life impossible and embrace the joyful freedom of living life with low demands."

When working with PDA children, the goal is to help them stay out of fight-and-flight mode. If we try to do interventions to try to get the kids to change, it's not going to end well. We need to build an environment that feels safe for the child. Gaining a lens for understanding demands and autonomy threats while becoming flexible in our demands is critical for fostering a safe environment.

Parenting a child with PDA can be challenging, but by adopting a low-demand parenting approach, parents can create a safe environment for their child to grow and thrive. Here are a few basic practices you can implement to support your PDA child:

Supporting your PDA Child (Credit: Adapted from PDA Society )

✦ Prioritizing flexible and collaborative approaches that foster a sense of autonomy, rather than making the child feel controlled by others, while still maintaining appropriate boundaries.

✦ Using indirect communication styles and depersonalizing requests to minimize the perception of demands and reduce stress.

✦ Employing low-arousal strategies that help keep anxiety levels to a minimum and provide a sense of control while also allowing for some flexibility and choice.

✦ Allowing plenty of time to process questions and information, and avoiding rushing communication, to reduce stress and overwhelm.

✦ Being mindful of sensory overload and taking steps to minimize it, such as creating a calm and quiet environment and providing sensory supports as needed.

Low-arousal approaches are essential when it comes to parenting a child with PDA. Traditional parenting techniques that rely on firm boundaries and consequences, such as those used with other children or even those recommended for autism, may prove to be ineffective or even counter-productive for PDA children. Instead, a low-arousal approach can be more successful, keeping anxiety levels to a minimum and providing a sense of control.

This type of approach is based on trust, flexibility, collaboration, careful use of language, and a balanced approach to demands. It aims to reduce the demands placed on the child and provide an environment that minimizes stress and anxiety. This approach recognizes that the child's needs are unique and require tailored solutions that take into account their individual differences.

Is Low-Demand Parenting Permissive Parenting?

When first learning about low-demand parenting, there may be some confusion as to whether it is a form of permissive parenting where there are no boundaries or expectations for the child's behavior. However, this is not the case. Low-demand parenting is a unique approach to parenting that prioritizes reducing stress and anxiety for the child while still maintaining appropriate boundaries and expectations.

Rather than imposing demands or punishments, low-demand parenting involves adapting the environment and activities to the child's unique needs and preferences and allowing the child to take the lead in their play and activities. Strategies such as redirection and reframing demands are used to provide structure and guidance while still respecting the child's autonomy.

Permissive parenting, on the other hand, may appear to involve reducing demands and allowing the child to do as they please, but it does not involve setting clear boundaries or expectations. This can create confusion and anxiety for the child due to a lack of structure and predictability.

Low-demand parenting involves finding a balance between meeting the child's needs and providing structure and guidance without imposing unnecessary stress and anxiety. The goal is to create a supportive and nurturing environment that fosters the child's growth and development while minimizing stress and frustration. By setting clear expectations and boundaries while prioritizing the child's emotional and psychological well-being, low-demand parenting helps children to feel more supported, connected, and secure while also learning important life skills and behaviors.

Incorporating Low-Demand Parenting in Practice

Low-demand parenting involves a variety of practices, but three core strategies stand out as particularly important:

Parents need to be aware of the demands placed on their children and drop non-critical demands to reduce stress levels. They can also use strategies such as redirection and reframing demands rather than imposing demands or punishments. By reducing the perception of demands, parents can help create a supportive and nurturing environment that fosters the child's growth and development while minimizing stress and frustration.

Becoming Demand-Aware

The first step in implementing low-demand parenting is to become aware of the many demands that our children experience on a daily basis. By putting ourselves in our child's shoes and considering life from their perspective, we can gain a deeper understanding of the challenges they face. One way to do this is to take an inventory of the demands our children experience throughout the day.

To get started, take a walk through your child's day and make a note of every demand they encounter. You may be surprised at just how many there are! This exercise can help us to recognize the sheer volume of demands our children face and can help us to better understand their struggles.

Dropping Demands

Once we become aware of the demands our children face, the next step is to consider which demands are truly critical and which can be dropped. This can be particularly important during times of burnout or overwhelm when reducing demands can help our children to feel more in control and less stressed.

It's important to remember that what constitutes a critical demand may vary from family to family and even from day-to-day. For example, going to a therapy appointment may be a critical demand for one family but not for another. By prioritizing critical demands and dropping non-critical demands, we can help our children to better manage their daily load and reduce stress.

As a parent of an Autistic PDAer, it's important to discern between critical and non-critical demands, especially during burnout periods. For instance, while eating dinner together as a family wasn't critical for us, we recognized that our child needed space during high sensory days and allowed them to eat in their room. On the other hand, attending the long-awaited occupational therapy appointment was a critical demand for us, while going to Tae-Kwon-Do was a demand we could drop.

One of the biggest challenges for our family, and many others, was that most interventions aimed at supporting Autistic children felt like demands, including therapy, medication, and occupational therapy. To balance expectations and autonomy, we took an option approach where we provided a buffet of options for our child to choose from.

We communicated the overarching need and let our child decide, creating a framework with clear expectations while also honoring their autonomy. I call this the "bucket approach" (because the bucket is non-negotiable, but within the bucket, our child has several options to choose from). This "bucket approach" is a frequently used strategy in our family.

Reducing the Perception of Demands

Finally, we can work to reduce the perception of demands by using language, tone, and other strategies that help to frame requests in a more positive, choice-oriented way. This can include using declarative language, rephrasing requests to talk about objects rather than people, and incorporating elements of choice into requests. The PDA society has an in-depth list of how to do reduce the perception of demands , and several of the following recommendations are adapted from their recommendations.

Consider Your Language: Use declarative language , rephrase requests to talk about objects rather than people, and start requests with "please" to reduce the perception of demands. Phrases like "I wonder whether..." and "Let's see if..." also incorporate an element of choice.

Phrasing and Tone: Be mindful of using a low-arousal and non-demanding tone of voice, as tone and sound can signal safety or threat for the nervous system.

Take a Collaborative Approach: Engage in collaborative problem-solving to approach challenges together.

Monitor Your Energy: PDAers are sensitive to the energy of others, so be aware of your own energy and how it may impact your child.

Outsource Demands and Depersonalize: Explain that requirements are made by some higher authority or incorporate them into daily routines, post-its, or to-do lists to depersonalize demands and reduce uncertainty.

Support Sensory Safety and Regulation: Many PDAers have sensory integration and sensory disabilities, so create a sensory-safe environment and support their sensory regulation.

Limit Demands: Use declarative statements and be mindful of your language to reduce implicit demands.

Activate and Accommodate: Distract from demands by turning them into a game or incorporating interests to tap into intrinsic motivation.

Use Humor and Novelty: Use humor to make everyone feel more relaxed and incorporate novelty to keep things interesting.

Slow Down Communication: Give ample time to process questions and information to reduce overwhelm and prevent rushing communication.

Ask for Help: Say that you don't know or can't remember how to do something to perceive the child's autonomy while requesting support.

Offer Choices: Give the child some control by offering limited or free choices within certain parameters to maintain autonomy

By implementing these core practices of low-demand parenting, we can create a more supportive and understanding home environment that helps our children to manage their daily demands more effectively.

Lower Demand Lifestyle

Before concluding the discussion on low-demand parenting, it's important to also highlight the value of supporting a low-demand lifestyle for the entire family. If we only focus on low-demand parenting within the home, we miss an essential component of creating a supportive environment for children with PDA. In today's fast-paced and high-demand culture, it's challenging to slow down and establish a lifestyle grounded in simplicity and connection. However, a low-demand lifestyle can be beneficial for the entire family by supporting natural rhythms and routines.

Prioritizing a lower-demand lifestyle involves creating a home culture that resists the culture of busyness and reduces the demands placed on both parents and children. This includes creating space for rest, reflection, and connection, simplifying schedules, and prioritizing self-care. By supporting a low-demand lifestyle for the whole family by reducing demands placed on both parents and children, families can create space for rest, reflection, and connection.

Adopting a low-demand lifestyle can help families align with their innate human nature and foster a more sustainable, connected, and fulfilling life. It's not just about reducing individual demands but creating a culture of simplicity and ease that benefits everyone. It's about embracing a more intentional and mindful way of living, where the focus is on what truly matters: connection, well-being, and a sense of meaning.

Where to Go From Here?

If you're looking for further resources and guidance on PDA, there are several great options available.

✦ The Low Demand Parenting Summit ( you can purchase tickets here)

✦ Dr. Donna Henderson and I partnered up to host Neurodivergent Insights' first Master Class, where you get a deep dive into understanding what PDA is and what it is not. The 90-minute master class is currently on sale for 19.99 (the normal price 29.99).

Other PDA Resources

✦ The PDA Society also offers a variety of free resources and guides, including a comprehensive booklet on what PDA is , as well as their PANDA approach to implementing low-arousal strategies in parenting. Their guide for parents of PDAers is particularly helpful.

✦Another excellent resource is Amanda Diekman's book, Low-Demand Parenting: Dropping Demands, Restoring Calm, and Finding Connection with Your Uniquely Wired Child. This book offers practical advice and guidance for implementing low-demand parenting strategies in your home.

References

Identifying and Assessing PDA: https://www.pdasociety.org.uk/what-is-pda-menu/identifying-assessing-pda/

What is PDA? booklet www.pdasociety.org.uk/resources/what-is-pda-booklet and information sheet www.pdasociety.org.uk/resources/what-is-pda-information-sheet

Henderson, Donna, Ph.D. PDA: Not what you think it is! www.drdonnahenderson.com/post/grow-your-blog-community

Diekman, Amanda. Low-Demand Parenting: Dropping Demands, Restoring Calm, and Finding Connection with Your Uniquely Wired Child

Parenting can be a wild ride full of constant adjustments and tweaks. My husband and I used to joke that it was a "co-evolutionary arms race" as we tried to keep up with our daughter's changing needs. We have two doctorates (mine in clinical psychology, his in education). With my background in clinical psychology and my husband's in education, we thought we had all the tools and strategies to handle any challenge that came our way. But sometimes, nothing seemed to work, and we found ourselves at a loss for how to parent our daughter. We would often ask ourselves, "If we can't figure this out with our backgrounds, who can?!"

We quickly realized that our bright, intelligent daughter could sense when we were trying to influence her into a specific response. Rewards and threats of consequences only made things worse. As the stay-at-home parent, I found myself getting caught up in her meltdowns and feeling like a terrible mother. My nervous system was constantly on edge, and I struggled to understand why parenting felt so incredibly hard.

When she was first diagnosed as Autistic, it helped explain some of our struggles, but we still felt like there was something missing. That's when we learned about PDA, which became the missing piece of the puzzle in understanding our child. Through our exploration of PDA, we discovered the concept of low-demand parenting, which is often associated with PDA advocacy and parenting groups. But before we dive into low-demand parenting, let's first unpack what PDA is and what it isn't.

There is a lot of information in this article (my Autistic brain just kept going with it, feel free to save it for later in taking in the pieces of information that feel useful).

What is Pathological Demand Avoidance (PDA)

Pathological Demand Avoidance (PDA) is a term that has historically been used to describe a profile of autism. However, an increasing number of individuals identifying with this profile are beginning to use "Pervasive Drive for Autonomy" instead (coined by Tomlin Wilding), better capturing the underlying core need. Demands are only a problem insofar as they threaten autonomy, and for people with PDA, autonomy equals safety. Any threat to that autonomy is perceived as dangerous, triggering a fight, flight, or freeze response.

The neurodivergent nervous system tends to be more rigid, meaning it more easily flips into a stressed state. In the case of PDA, there is almost no window of tolerance, so simple, everyday demands like "put on your shoes" can lead to big emotional reactions.

People with PDA can vacillate in their mood. On the one hand, they can be absolutely charming and light up the room (particularly when they have control and autonomy). On the other hand, when they feel threatened, they can appear excessively controlling and dominating, engaging in ways that may feel manipulative to others. Understanding the neurobiology behind PDA can help parents and caregivers respond with more attunement and empathy rather than frustration and confusion (and for PDAers it can lead to greater self-compassion).

Characteristics of Pathological Demand Avoidance (PDA)

Pathological Demand Avoidance (PDA) is not yet an official medical diagnosis, but there are several core characteristics associated with it. While demand avoidance is the most widely discussed characteristic of PDA, other traits cluster with the PDA profile, which can lead to confusion for parents and healthcare professionals. The PDA Society in the UK has outlined the following core characteristics of PDA:

Resists and avoids the ordinary demands of life

Uses Social Strategies as part of their avoidance

Appears sociable on the surface

Experiences excessive mood swings and impulsivity

'Obsessive' behavior, often focused on other people

Appears comfortable in role play and pretend, sometimes to an extreme extent

Play can appear imaginative

When they involve others in their role-play, children with PDA are usually very controlling of the themes, roles, and dialogue

Other features of PDA include masking and strengths such as a strong sense of justice and fairness, independence, charisma, creativity, compassion, humor, imagination, and tenacity. Individuals with PDA face a great deal of misunderstanding and are frequently misdiagnosed with behavioral disorders. This can lead to blaming being placed on them and the parents for their explosive meltdowns and responses to autonomy threats, leaving parents feeling helpless and confused after trying a variety of therapies, medications, and parenting tactics.

In order to support individuals with PDA effectively, it is crucial to recognize and understand the characteristics of this condition. However, PDA can perplex many clinicians as it often goes unrecognized and can complicate the identification of autism due to its masking or influencing the presentation of Autistic traits.

Why Does PDA Cause Diagnostic Confusion

Dr. Donna Henderson, an expert on non-stereotypical presentations of autism, has identified several clinical characteristics of PDA that contribute to its diagnostic confusion. She explains in her blog post, "PDA: Not what you think it is!" :

"These individuals tend to have better eye contact and better social reciprocity than most with autism, and they can often appear to be socially typical. Their relatively good superficial social skills often make people wonder whether or not they are really on the autism spectrum (but in my experience, they are)."

Additionally, PDAers tend to be more socially savvy than most people with autism, and they can use sophisticated strategies (often perceived as manipulative) to regain a sense of autonomy. Furthermore, the presentation of PDA can vary depending on the context, making it difficult to diagnose. As Dr. Henderson notes,

"Individuals with PDA can do really well for short periods of time and then (seemingly) all of a sudden stop doing well (Jekyll and Hyde), which makes it look like their behavior is entirely volitional (it isn't)."

This inconsistency can lead to misdiagnosis, particularly when the child is able to mask well in certain settings. For example, "Some PDAers only struggle in one setting. So, they might do well at school (camouflage) and then completely fall apart at home. Conversely, they might do well at home (if there are low demands) but fall apart with the demands of school."

Finally, PDAers may not exhibit the same need for a routine that is characteristic of autism. Dr. Henderson explains, "PDAers may not do as well with routine and seem to need more novelty than most autistic individuals." These differences in presentation make PDA a perplexing case for many clinicians, leading to misdiagnosis and misunderstanding of the condition.

Parenting PDA

Parenting a child with PDA can be a challenging experience, as demands and requests can trigger a threat response in the child. With hundreds of demands placed on children each day, parents may inadvertently contribute to their child's stress and anxiety. Everyday tasks like brushing their teeth, getting dressed, and answering questions can become a source of conflict and emotional distress for children with PDA. And when they go to school, they may face even more demands that exacerbate their difficulties. Interestingly, a significant percentage of children with PDA do not thrive in traditional school environments, further complicating the situation for parents.

Given the unique challenges associated with this condition parenting a child with Pathological Demand Avoidance (PDA) can be a daunting task. PDA is characterized by an overwhelming sense of anxiety and avoidance when faced with demands or expectations. Traditional parenting techniques that rely on firm boundaries and consequences may not be effective for PDA children. This is where Low Demand Parenting comes in.

What is Low Demand Parenting?

Low Demand Parenting is a low-arousal approach that prioritizes reducing stress and anxiety levels in children with PDA. It is based on trust, flexibility, collaboration, and a balanced approach to demands. It involves adapting the environment and activities to the child's unique needs and preferences and allowing the child to take the lead in their play and activities. As Amanda Diekman, author of Low Demand Parenting explains it: "Low-demand parenting allows you to drop the demands and expectations that are making family life impossible and embrace the joyful freedom of living life with low demands."

When working with PDA children, the goal is to help them stay out of fight-and-flight mode. If we try to do interventions to try to get the kids to change, it's not going to end well. We need to build an environment that feels safe for the child. Gaining a lens for understanding demands and autonomy threats while becoming flexible in our demands is critical for fostering a safe environment.

Parenting a child with PDA can be challenging, but by adopting a low-demand parenting approach, parents can create a safe environment for their child to grow and thrive. Here are a few basic practices you can implement to support your PDA child:

Supporting your PDA Child (Credit: Adapted from PDA Society )

✦ Prioritizing flexible and collaborative approaches that foster a sense of autonomy, rather than making the child feel controlled by others, while still maintaining appropriate boundaries.

✦ Using indirect communication styles and depersonalizing requests to minimize the perception of demands and reduce stress.

✦ Employing low-arousal strategies that help keep anxiety levels to a minimum and provide a sense of control while also allowing for some flexibility and choice.

✦ Allowing plenty of time to process questions and information, and avoiding rushing communication, to reduce stress and overwhelm.

✦ Being mindful of sensory overload and taking steps to minimize it, such as creating a calm and quiet environment and providing sensory supports as needed.

Low-arousal approaches are essential when it comes to parenting a child with PDA. Traditional parenting techniques that rely on firm boundaries and consequences, such as those used with other children or even those recommended for autism, may prove to be ineffective or even counter-productive for PDA children. Instead, a low-arousal approach can be more successful, keeping anxiety levels to a minimum and providing a sense of control.

This type of approach is based on trust, flexibility, collaboration, careful use of language, and a balanced approach to demands. It aims to reduce the demands placed on the child and provide an environment that minimizes stress and anxiety. This approach recognizes that the child's needs are unique and require tailored solutions that take into account their individual differences.

Is Low-Demand Parenting Permissive Parenting?

When first learning about low-demand parenting, there may be some confusion as to whether it is a form of permissive parenting where there are no boundaries or expectations for the child's behavior. However, this is not the case. Low-demand parenting is a unique approach to parenting that prioritizes reducing stress and anxiety for the child while still maintaining appropriate boundaries and expectations.

Rather than imposing demands or punishments, low-demand parenting involves adapting the environment and activities to the child's unique needs and preferences and allowing the child to take the lead in their play and activities. Strategies such as redirection and reframing demands are used to provide structure and guidance while still respecting the child's autonomy.

Permissive parenting, on the other hand, may appear to involve reducing demands and allowing the child to do as they please, but it does not involve setting clear boundaries or expectations. This can create confusion and anxiety for the child due to a lack of structure and predictability.

Low-demand parenting involves finding a balance between meeting the child's needs and providing structure and guidance without imposing unnecessary stress and anxiety. The goal is to create a supportive and nurturing environment that fosters the child's growth and development while minimizing stress and frustration. By setting clear expectations and boundaries while prioritizing the child's emotional and psychological well-being, low-demand parenting helps children to feel more supported, connected, and secure while also learning important life skills and behaviors.

Incorporating Low-Demand Parenting in Practice

Low-demand parenting involves a variety of practices, but three core strategies stand out as particularly important:

Parents need to be aware of the demands placed on their children and drop non-critical demands to reduce stress levels. They can also use strategies such as redirection and reframing demands rather than imposing demands or punishments. By reducing the perception of demands, parents can help create a supportive and nurturing environment that fosters the child's growth and development while minimizing stress and frustration.

Becoming Demand-Aware

The first step in implementing low-demand parenting is to become aware of the many demands that our children experience on a daily basis. By putting ourselves in our child's shoes and considering life from their perspective, we can gain a deeper understanding of the challenges they face. One way to do this is to take an inventory of the demands our children experience throughout the day.

To get started, take a walk through your child's day and make a note of every demand they encounter. You may be surprised at just how many there are! This exercise can help us to recognize the sheer volume of demands our children face and can help us to better understand their struggles.

Dropping Demands

Once we become aware of the demands our children face, the next step is to consider which demands are truly critical and which can be dropped. This can be particularly important during times of burnout or overwhelm when reducing demands can help our children to feel more in control and less stressed.

It's important to remember that what constitutes a critical demand may vary from family to family and even from day-to-day. For example, going to a therapy appointment may be a critical demand for one family but not for another. By prioritizing critical demands and dropping non-critical demands, we can help our children to better manage their daily load and reduce stress.

As a parent of an Autistic PDAer, it's important to discern between critical and non-critical demands, especially during burnout periods. For instance, while eating dinner together as a family wasn't critical for us, we recognized that our child needed space during high sensory days and allowed them to eat in their room. On the other hand, attending the long-awaited occupational therapy appointment was a critical demand for us, while going to Tae-Kwon-Do was a demand we could drop.

One of the biggest challenges for our family, and many others, was that most interventions aimed at supporting Autistic children felt like demands, including therapy, medication, and occupational therapy. To balance expectations and autonomy, we took an option approach where we provided a buffet of options for our child to choose from.

We communicated the overarching need and let our child decide, creating a framework with clear expectations while also honoring their autonomy. I call this the "bucket approach" (because the bucket is non-negotiable, but within the bucket, our child has several options to choose from). This "bucket approach" is a frequently used strategy in our family.

Reducing the Perception of Demands

Finally, we can work to reduce the perception of demands by using language, tone, and other strategies that help to frame requests in a more positive, choice-oriented way. This can include using declarative language, rephrasing requests to talk about objects rather than people, and incorporating elements of choice into requests. The PDA society has an in-depth list of how to do reduce the perception of demands , and several of the following recommendations are adapted from their recommendations.

Consider Your Language: Use declarative language , rephrase requests to talk about objects rather than people, and start requests with "please" to reduce the perception of demands. Phrases like "I wonder whether..." and "Let's see if..." also incorporate an element of choice.

Phrasing and Tone: Be mindful of using a low-arousal and non-demanding tone of voice, as tone and sound can signal safety or threat for the nervous system.

Take a Collaborative Approach: Engage in collaborative problem-solving to approach challenges together.

Monitor Your Energy: PDAers are sensitive to the energy of others, so be aware of your own energy and how it may impact your child.

Outsource Demands and Depersonalize: Explain that requirements are made by some higher authority or incorporate them into daily routines, post-its, or to-do lists to depersonalize demands and reduce uncertainty.

Support Sensory Safety and Regulation: Many PDAers have sensory integration and sensory disabilities, so create a sensory-safe environment and support their sensory regulation.

Limit Demands: Use declarative statements and be mindful of your language to reduce implicit demands.

Activate and Accommodate: Distract from demands by turning them into a game or incorporating interests to tap into intrinsic motivation.

Use Humor and Novelty: Use humor to make everyone feel more relaxed and incorporate novelty to keep things interesting.

Slow Down Communication: Give ample time to process questions and information to reduce overwhelm and prevent rushing communication.

Ask for Help: Say that you don't know or can't remember how to do something to perceive the child's autonomy while requesting support.

Offer Choices: Give the child some control by offering limited or free choices within certain parameters to maintain autonomy

By implementing these core practices of low-demand parenting, we can create a more supportive and understanding home environment that helps our children to manage their daily demands more effectively.

Lower Demand Lifestyle

Before concluding the discussion on low-demand parenting, it's important to also highlight the value of supporting a low-demand lifestyle for the entire family. If we only focus on low-demand parenting within the home, we miss an essential component of creating a supportive environment for children with PDA. In today's fast-paced and high-demand culture, it's challenging to slow down and establish a lifestyle grounded in simplicity and connection. However, a low-demand lifestyle can be beneficial for the entire family by supporting natural rhythms and routines.

Prioritizing a lower-demand lifestyle involves creating a home culture that resists the culture of busyness and reduces the demands placed on both parents and children. This includes creating space for rest, reflection, and connection, simplifying schedules, and prioritizing self-care. By supporting a low-demand lifestyle for the whole family by reducing demands placed on both parents and children, families can create space for rest, reflection, and connection.

Adopting a low-demand lifestyle can help families align with their innate human nature and foster a more sustainable, connected, and fulfilling life. It's not just about reducing individual demands but creating a culture of simplicity and ease that benefits everyone. It's about embracing a more intentional and mindful way of living, where the focus is on what truly matters: connection, well-being, and a sense of meaning.

Where to Go From Here?

If you're looking for further resources and guidance on PDA, there are several great options available.

✦ The Low Demand Parenting Summit ( you can purchase tickets here)

✦ Dr. Donna Henderson and I partnered up to host Neurodivergent Insights' first Master Class, where you get a deep dive into understanding what PDA is and what it is not. The 90-minute master class is currently on sale for 19.99 (the normal price 29.99).

Other PDA Resources

✦ The PDA Society also offers a variety of free resources and guides, including a comprehensive booklet on what PDA is , as well as their PANDA approach to implementing low-arousal strategies in parenting. Their guide for parents of PDAers is particularly helpful.

✦Another excellent resource is Amanda Diekman's book, Low-Demand Parenting: Dropping Demands, Restoring Calm, and Finding Connection with Your Uniquely Wired Child. This book offers practical advice and guidance for implementing low-demand parenting strategies in your home.

References

Identifying and Assessing PDA: https://www.pdasociety.org.uk/what-is-pda-menu/identifying-assessing-pda/

What is PDA? booklet www.pdasociety.org.uk/resources/what-is-pda-booklet and information sheet www.pdasociety.org.uk/resources/what-is-pda-information-sheet

Henderson, Donna, Ph.D. PDA: Not what you think it is! www.drdonnahenderson.com/post/grow-your-blog-community

Diekman, Amanda. Low-Demand Parenting: Dropping Demands, Restoring Calm, and Finding Connection with Your Uniquely Wired Child

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Having a child with PDA can be challenging, but low-demand parenting can help. Learn about it here.

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Strategies and Support for School (Letter Template)

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A dear friend and fellow PDA mother, Kim, recently wrote the following letter as a way to share important information with the school, in addition to the required documents that are part of the IEP process. She shared this document with me, which I found so incredibly helpful to use as a template fo…

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You may have found your way here because you have a young, Pathologically Demand Avoidant (PDA) child. Perhaps your child has had a diagnosis for a while or maybe you are just learning about the term. Or, you may not know if your child is PDA, and have stumbled upon this page because you have tried everything under the sun to help and support your child, but all the traditional parenting approaches and behavioral strategies simply haven't worked. You are in the right place.

If you are like us, you have felt isolated, disheartened and confused along your parenting journey. Perhaps you have asked yourself why the same strategies your peers use or your parents and professionals suggest, not only don't work with your child, but have made things worse. You may even feel like a terrible parent. We did.

But we now know we're not bad parents. Neither are you. We created this space to help other parents realize that you aren't alone, you aren't crazy, and there are moments of joy, light and wonder along the path of parenting a young PDA child. It is the resource we wished had existed when we were in our most difficult moments with our children.

Here in this space, we hope to share our experiences, both hard and hopeful, with honesty and humor, and most importantly, without judgement.

We are not clinicians, doctors, or therapists.

We are a trained Waldorf educator and an academic researcher who have spent the last six years dedicated to understanding our children, when the professionals had no idea what was going on and when no diagnosis quite fit. As mothers, we have dug our families out of despair. (We know that feeling, too.) We, like you, have also wondered how it could possibly be this hard to parent and support a young child. We understand the day-to-day difficulty of creating a low-demand lifestyle, using non-violence in response to (what looks like) rage and defiance, and giving our bodies to the sensory needs of our kids just so that they can stay regulated.

We won't offer a silver bullet here. There isn't one.

Rather, we hope to offer you and your family validation, support, and the resources we have compiled so you can find the strength to parent your child as they are. We hope to be another step on your path towards tuning out the nonsense and affirming, even for yourself, that your child isn't "bad," isn't a lost cause, and certainly doesn't need another sticker chart.

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HOME | Pathological Demand Avoidance (PDA) Parents

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This is about the parenting experience of raising young children with the Pathological Demand Avoidance (PDA) profile of Autism. It is a non-violent, non-behavioral approach to supporting children with PDA. Resources, help and a community to parents of children with severe behavioral challenges.

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Directory of PDA Positive Providers in US

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Directory of PDA Positive Providers in US

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https://padlet.com/lisakestler/autism-lej7sg4fw5coeqb9

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Low demand parenting doesn't mean that we dismiss all expectations of a child and let them do whatever they want. Instead, low demand parenting means dropping demands and reducing expectations in order to meet kids with radical acceptance. AS Amanda Diekman explains in this episode, the purpose of the low demand life is to find ease and joy.
But how exactly do you shift from the high demand parenting that's instinctual to most people to low demand parenting? Amanda explains that you start with radical acceptance and respecting the child's boundaries. Listen in to hear her explain all six steps to shift to low demand parenting and see a transformation for your family.

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‎Beautifully Complex: 206: Low Demand Parenting, with Amanda Diekman on Apple Podcasts

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Low demand parenting doesn't mean that we dismiss all expectations of a child and let them do whatever they want. Instead, low demand parenting means dropping demands and reducing expectations in order to meet kids with radical acceptance. AS Amanda Diekman explains in this episode, the purpose of t...

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‎TILT Parenting: Raising Differently Wired Kids: TPP 173: What is Pathological Demand Avoidance in Children? With Dr. Melissa Neff on Apple Podcasts

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This episode is a deep dive into pathological demand avoidance in children (also known as PDA), which is typically defined as a pervasive developmental disorder that falls under the autism spectrum. It's a label that's frequently used in the United Kingdom, and it's often defined as a complicated and misunderstood condition wherein some people have a heightened anxiety response to demands being placed on them. PDA isn't universally recognized as a diagnosis, and it's also a label rooted in controversy.
To talk with us about all of this is friend of the podcast Dr. Melissa Neff, a licensed clinical psychologist who specializes in the assessment of ADHD, depression, anxiety, trauma, nonverbal learning disorder, and autism spectrum disorders, about the diagnostic process.
Melissa Neff, Ph.D. is a clinical psychologist in private practice in Missoula, MT. She conducts psychological evaluations for children and adults. She specializes in the assessment of giftedness, ADHD, depression, anxiety, trauma, nonverbal learning disorder, and typical and atypical autism spectrum disorders.

Things you'll learn from this episode
How pathological demand avoidance (PDA) is definedWhether or not pathological demand avoidance in children is a real thingHow PDA is differentiated from ODDWhat it means that PDA is "within and beyond" ASDWhat demand avoidance behaviors look like in children and how parents can assess themThe connection between school refusal and PDAHow to support kids who are struggling with demand avoidant behaviors
Resources mentioned for pathological demand avoidance in children
Dr. Melissa NeffUnderstanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers, and Other Professionalsby Phil Christie, Margaret Duncan, Ruth Fidler, and Zara HealyPDA by PDA'ers: From Anxiety to Avoidance to Masking to Meltdowns Compiled by Sally CatPathological Demand Avoidance Syndrome - My Daughter is Not Naughty by Jane SherwinCan't Help Won't: Pathological Demand Avoidance Syndrome (Medium)Support the showConnect with Tilt Parenting
Visit Tilt Parenting Take the free 7-Day Challenge Read a chapter of Differently Wired Follow Tilt on Twitter & Instagram

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tpp 173: what is pathological demand avoidance in children? with dr. melissa neff

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tilt parenting: raising differently wired kids

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‎TILT Parenting: Raising Differently Wired Kids: TPP 173: What is Pathological Demand Avoidance in Children? With Dr. Melissa Neff on Apple Podcasts

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This episode is a deep dive into pathological demand avoidance in children (also known as PDA), which is typically defined as a pervasive developmental disorder that falls under the autism spectrum. It's a label that's frequently used in the United Kingdom, and it's often defined as a complicated an...

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Educational practice guidelines for PDA students

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Educational practice guidelines for PDA students

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https://tinyurl.com/yeymdu9m

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https://tinyurl.com/2p9jh3s4

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https://tinyurl.com/3h9aet9n

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Tim Collins is an adult who was recently diagnosed with PDA. Along with sharing his story with us (please see his case study) he has kindly created a list of Top Tips designed to help …

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Self-help, coping strategies and therapies for adult PDAers

These suggestions for self-help, coping strategies and therapies were assembled from a variety of first-hand accounts shared by adults, diagnosed or self-identifying as having a PDA profile (PDAers being their preferred term of reference), in books, blogs and on social media and from the other information for adults on the PDA Society website.

A PDF version of this resource is also available to download here.

The suggestions are grouped under the following headings:

Recognising demands

Recognising avoidance

Identifying & understanding your PDA

Self-acceptance

Understanding masking

Finding your tribe

Managing, reducing & disguising demands

Being aware of your triggers

Sensory regulation

Having demand-free time

Exploring different ways of working

Informing others & asking for accommodations

Maintaining relationships

Therapy, counselling, mindfulness & meditation

The information has also been captured in this infographic, kindly created by Sally Cat (a higher resolution version is available here)

Recognising demands

The first step may be recognising what constitutes 'a demand'. Demands take many forms - from the more obvious direct instructions to suggestions and expectations, internal or self-imposed demands such as hunger/thirst or perfectionism, aspects of daily life including washing/dressing, social niceties like saying thank you ... the list goes on.

Some who are new to PDA are shocked to find out that things they've always struggled with are actually demands, like returning books to the library or saying "thank you" to people - Riko

Recognising avoidance

Avoidance processes are also many and varied - distraction, excusing yourself, incapacitating yourself, role play and fantasy, procrastination, negotiation, controlling, masking ... demand avoidance is about much more than just saying 'no'. The PDA Society video Demand Avoidance of the PDA kind gives some examples from children, young people and adults.

Identifying and understanding your PDA

Recognising that some of the challenges you face (as well as some of your strengths) may be explained by PDA is an important starting point ...

For me self-awareness is the key. If you don't have self-awareness how can you modify or avoid things that cause anxiety? - Julia

Learn as much as possible about PDA and other conditions. Read, listen and be open to new information - Riko

Self-acceptance

Once you understand the possible source of some of your challenges, self-acceptance and self-care can follow ...

If I could say one thing to my younger self it would be: "your struggles are real and you are worth loads. You are a squiggle-shaped peg that is unique and amazing. Learn to love yourself and you can soar to great heights - Sally

And you can adjust your expectations of yourself a little ...

Every single thing I do involves battling demand avoidance and I can only do so much ... awareness of my limitations has given me the wisdom and confidence to set personal goals that I can keep - Sally

Understanding masking

Masking or social 'mimicry' - hiding PDA traits and trying to act in ways that seem more 'normal' or 'socially acceptable' - can be an intentional or innate 'coping mechanism' for many PDAers, though this can take its toll ...

I suppose masking is the way many of us survive socially, especially as many of us were brought up in families who had little or no knowledge of autism, much less PDA, so we had to find ways to cope - Riko (PDA by PDAers pg 84)

I mask, didn't know I was masking. Just knew I couldn't be myself. Myself was way too much for people, too strange, too intense, too bubbly, too deep, too all over the place, just too much. I am learning to be myself now, at 33 - Laura (PDA by PDAers pg 78)

Masking was a way of flying under the radar, avoiding unwanted scrutiny or attention. I found early on that I was extremely good at interpreting what people thought of me and at playing exactly to that expectation. Since I have been diagnosed I have to a great degree stopped masking ... Trying to mask for the world all the time is a quick track to burning out and being miserable for me - Tony (PDA by PDAers pg 76-77)

Finding your tribe

Connecting with others who understand can be reassuring and liberating ...

I set up an adult support group on Facebook ... after several weeks a few people joined, and now several years later we have 1473 members. It was great to be able to say 'does anyone else do this?' and discover that I wasn't alone - Julia

There are several books written by adult PDAers: PDA by PDAers compiled by Sally Cat, Pathological Demand Avoidance Explained and Calendar Girl: The memoirs of a PDA child in a dysfunctional family by Sally Cat and Being Julia by Julia Daunt & Ruth Fidler. There's also many Facebook groups, pages and blogs and vlogs; the adult life section and adult case studies on the PDA Society website.

Managing, reducing and disguising demands

As demands are many, varied and pervasive, finding ways to manage demands and make them feel less 'demandy' is essential ...

I try to do small demands over a longer time period with plenty of planned downtime in between. I generally only aim to do two things every day, aside from the usual dressing and eating, but if I don't do them then that's fine, if I do more then that's great - Riko

I cook in large batches and portion it out so that on days where I can't face the demand of cooking, there is food for my girlfriend to take for lunch or for me to put in the microwave - Tony

I keep daily demands and expectations as low as possible so as to keep my anxiety low enough that I can function and enjoy life. I do this by reducing/removing unnecessary demands and routines, by changing tack often, taking naps when I begin to feel overwhelmed and by planning my weeks carefully ... so that events/demands are spread meaning I'm able to have prep and downtime too ... I meltdown if I'm not able to do this - Julia (PDA by PDAers pg 292-293)

I can sometimes get something done by starting it with no end expectations - Alice (PDA by PDAers pg 293)

I can sometimes 'burst' demand avoidance by focusing on it. The more I coax myself to think about my demand avoidance, the less power it has ... sometimes I can squeeze past it by finding something exciting or otherwise appealing about the thing I'm avoiding - Sally Cat (PDA by PDAers pg 299)

Excuses ... useful for when demands are sprung on me ... by delaying them I can wait until I am better equipped to do the demand - Riko, PDA by PDAers pg 302

When anxiety is lower it may be possible to cope with more ...

It's impossible to remove every demand but removing or reducing the most demanding of demands is helpful. We need to learn how to cope with the anxiety of demands. There's no reason to jump in at the deep end. We can build up demands slowly and master techniques to help as we go. A bit like learning to drive or walk. Then hopefully, one day we'll be able to manage most everyday demands without having a panic attack - Riko

In some cases, 'tricking' your mind can be a useful technique ...

I've found that by giving myself an 'out' then it is much easier to meet demands, because I know I can change my mind whenever I want - Riko, PDA by PDAers pg 301

I find that if I am able to distract my thoughts from the task I am better able to actually get the job done. This works best for getting out of bed. It used to take me hours to get up ... I found that by not thinking of getting up at all my body would automatically move of its own accord - Riko, PDA by PDAers pg 302

I will make a list of things I need to do that day and then avoid them all, thus competing a whole different list of demands that also needed doing but were deliberately being ignored - Riko, PDA by PDAers pg302-303

Sometimes I'll decide not to go to a social event. This can mean that the anxiety is removed and minutes before the time for leaving I may change my mind and go anyway - Riko, PDA by PDAers pg 303

I have found introducing something new or mixing it up a little can actually help, there's less anxiety sometimes around something new ... When I feel myself avoiding daily activities I will do something to change the activity, I may buy new bath products, try new foods or eat out, buy new clothes or try a different style ... even moving the demand to a different time of day can help. Showering before bed ... or having cereal for dinner - Riko, PDA by PDAers pg 303-304

Or using humour/role play can also be helpful ...

It's easier to get things done if we can laugh about it and generally mess about, so if we can make things into a game then we do. There's an ongoing thing with our friends that I'm a super smart bear in a great human costume. 'I'm a bear, bears can't do x' is seen as a legitimate excuse or reason for needing help. If I can distract myself with debates, music and made-up songs/rhyming games I'm able to do a job on autopilot - Becca B (PDA by PDAers pg 295-296)

I find chores easier when pretending I am being filmed for TV. I adopt a character (say, a cleaner) and pretend I am doing a job for TV. I'll imagine cameras following me everywhere, watching what I'm doing and that people are asking me questions or commenting on my actions - Riko (PDA by PDAers, pg 300)

Being aware of your triggers

PDA is 'dimensional' in that it manifests in different ways for different people in different environments and at different times. What triggers you may be different to what triggers someone else. Being aware of your triggers and how this feels may mean that you can begin to reduce anxiety and stress before your 'bucket' overflows ...

The more anxious I get the more cognitively impaired I feel, I get muddled and forget what I'm saying. The gap between trigger and meltdown when I was a child was very small. As an adult it's longer, which I put down to a mixture of maturity and self-awareness, having greater control over my own life and knowing what strategies help - Julia

Sensory regulation

Processing sensory information can be challenging: you may find that you're particularly sensitive to sensory input or that you need to seek additional sensory input - finding a way to regulate this can help make life more comfortable ...

I get overloaded easily; many different things can cause it. Sensory overload is where I become too hot or too hungry or too itchy and my brain starts to shut down so I can't handle any more input from external sources. I have to remove myself from the sensory issue or try to reduce the sensory attack in order to function again. If not then it all becomes too much and I lash out verbally or physically, shouting or throwing/hitting objects - Riko (PDA by PDAers pg 146)

I find sensory and emotional overload connected, i.e. if I am emotionally heightened the sensory stuff is more of an issue, and vice versa - Vanessa (PDA by PDAers pg 149)

I like to try and keep on top of it. Taking short breaks, having a nap, changing task or just looking out a window are all helpful to me throughout the day - Julia (PDA by PDAers pg 148)

Having demand-free time

Allowing yourself demand-free or low demand time helps in reducing anxiety and can enable your system to reset. Spoon theory can be a helpful way of thinking about managing demands based on your capacity ...

PDA brains overload easily (this might be because it is very tiring having to fight demand avoidance all the time). We are better able to fight demand avoidance if we have had enough rest - Sally Cat

In order for me to be an adult for a full day (like when I attend a conference) I have to do nothing (literally) for a week beforehand. I don't dress or wash or cook, I have no social interactions, I don't do any of my hobbies. I sit on the sofa and watch TV. That way my anxiety is nice and low. I need another week's recovery time afterwards - Julia

I find things like logic puzzles and tactics-based Facebook games very calming, so if I play a bit before I have to do something it gets me in a much calmer frame of mind. Having a little quiet time before also helps get my head in gear - Elizabeth, PDA by PDAers pg 294

Exploring different ways of working

Some PDAers are able to work in a conventional way, some run their own business or work freelance, some find working life tricky and others may find that they aren't able to work but can maintain self-esteem in other ways ... (please also see Workplace Adjustments for PDA)

Being a PDA advocate, helping others and learning about myself as I go along, fills a gap and gives me a purpose. And because it's not an everyday, 9 to 5 thing it's a 'when I can handle it' role, it works for me - Julia

It's important to choose a role that a PDAer can do, that they like and that has plenty of room for accommodating the PDA aspects of the individual. Basically, work to your strengths - Riko

Wages are not a motivator for me. In fact, being paid a wage turns activities into demands that I'm compelled to avoid. My ideal career future lies in having an agent so I can produce creative works unhindered by admin demands. In the meantime, I am now on disability benefits and not in poverty for pretty much the first time in my life, which is really great - Sally

With work, flexi-time was really helpful to me and time off in lieu ... it allowed me space when I needed it. I did better the more latitude I had to make decisions about what I did when, and the more it felt like deadlines and expectations were reasonable. In one job I got to arrange my side of the office to suit me and re-orientated my desk which helped. I prefer teamwork to hierarchy. The unknown makes me anxious. 'Can you pop in to speak to me at 10ish about x' is better than 'I need to you in my office at 10.00 precisely - TC (PDA by PDAers pg 311)

Informing others and asking for accommodations

Deciding whether to tell other people about PDA is a very personal choice, and it may depend on how 'disabling' an effect you find demand avoidance has in your life. Some PDAers find that sharing information about PDA with others helps to improve mutual understanding (also please see section below on maintaining relationships) ...

I now only have friends, or cleaners or beauticians, who are PDA- friendly. I've found this to be quite a vital strategy and I'm much happier now I don't have to mask - Julia

Requesting appropriate accommodations can help make some situations (travelling, healthcare appointments etc.) easier. The PDA Society PDA Alert card may be useful for this too ...

We are highly prone to overloading in crowds; suffer great anxiety and intolerance of uncertainty; and being forced to wait and be penned in triggers Demand Avoidance. So schemes that enable us to be fast-tracked in queues, given priority seating or being able to choose appointment times make a big difference. One strategy I've implemented is to press for institutions to communicate with me via email, not phone or even face to face. This works better for me. I am more in control of my own world in that I can choose when to deal with emails and take my time considering my responses - Sally Cat, PDA by PDAers pg 310

Maintaining relationships

PDA can be difficult to explain to family, friends, colleagues or professionals and maintaining relationships can be tricky for all parties ...

We need flexibility in nearly everything. Rewording things so it feels less demandy. Giving options in how we do things. Explaining rules that are important and why we need to do some things, and doing away with anything that isn't essential. Allowing us space when we are struggling and giving us time to do tasks and time to recover afterwards...Don't take things we say and do personally, especially during meltdowns/panic attacks - Riko (PDA by PDAers pg 306-307)

Please keep me in the loop. I need to know what's going on. Keeping me informed is necessary if I am to avoid intense anxiety. Please consult me about appointment times and allow me plenty of notice. Further, if I miss an appointment, be lenient with this - Sally Cat (PDA by PDAers pg 309)

I need enough time to process, without listening to more words. The ability to get things in writing, and go through them in relative solitude, before responding - Barry (PDA by PDAers pg 309)

When I'm not coping I hate to be crowded or babied. Just leave me to it. Don't ask me when I'm melting down stupid questions like 'are you okay' - of course I'm not okay! I'm in meltdown! Also, no, you can't help and, no, I can't just stop. Just leave me to rant and get it out of my system. Don't baby me after too. I'm not made of glass and I don't need mothering. I'm often emotionally exhausted and embarrassed after a meltdown so just having you act normally will make the world of difference - Julia (PDA by PDAers pg 292-293)

I have my partner Julia to thank for this - a demand shared is a demand halved. She will involve me in cooking, washing, cleaning ... which I know this makes it more manageable for her. So, share the demand and then it becomes less - Paul

Therapy, counselling, mindfulness and meditation

For some, understanding PDA and putting coping strategies in place enables their emotional wellbeing; others have been prescribed medication for anxiety, depression, OCD etc.; for many it is a combination of both that helps them stay well. Therapy and counselling can be quite a demand in itself, and practitioners may need to adapt approaches to take account of this. Here are some ideas that others have found helpful ...

I started Alexander Technique lessons in my teens for foot and back pain. I've been a teacher myself for over 20 years and I now realise this was the best thing I could have done. It gives me a level of physical control and comfort that mostly can overcome the negative symptoms of PDA - Jenny Penny, PDA by PDAers pg 299

I've succeeded in reducing the amount of anxiety I feel through years of counselling and, perhaps most effectively, one-on-one Compassion Focused Therapy and a small group mindfulness course. These two techniques have both been proven via brain scans to rewire the brain to have fewer 'threat' responses (Fight/Flight/Freeze). I still feel a lot of anxiety, but less so ... I continue to perform mindful meditation every day (but only very briefly because it feels like a demand!) - Sally Cat (PDA by PDAers, pg 298)

The person-centered counsellor training I've done has been a coping strategy for me ... [it] has empowered me to trust mySELF. To believe that I might be OK as a functioning, interacting member of society. This training also, I feel, has empowered me to express myself to create my graphic memes about my experience of living with PDA and, perhaps most importantly, to feel that I'm OK inside - Sally Cat (PDA by PDAers pg 300)

Further information

In addition, we'd like to draw your attention to these additional sources of information, topics or fields of study which we feel are helpful in furthering understanding about PDA.

A recording of our Q&A on the topic of coping strategies for PDA adults with Riko Ryuki and Jim Sahlsberg is available to purchase for 30 days via our training hub.

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Self-help, coping strategies and therapies for adult PDAers

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Self-help, coping strategies and therapies for adult PDAers These suggestions for self-help, coping strategies and therapies were assembled from a variety of first-hand accounts shared by adults, diagnosed or self-identifying as having a PDA profile (PDAers being their preferred term of reference), in books, blogs and on social media and from the other information for adults

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Overview

PDA is a newly emerging profile that falls under the autism spectrum. It's recognized as an extreme avoidance of everyday activities due to heightened anxiety. In the United States and Canada, most families and professionals have not even heard of PDA, Pathological Demand Avoidance. That leaves parents whose child fits the profile of PDA without understanding, support or resources. That also leaves teachers and therapists unable to help these families. Parents who have discovered PDA feel isolated and unheard. We are trying to change that.

In other countries such as the United Kingdom and Australia, PDA is recognized. Individuals are getting formal diagnoses. There are trained professionals, conferences, books, educational services and support groups. There are even schools designed for this population. There is awareness and understanding.

The PDA profile is considered to be under the autism spectrum. It is not in the DSM so it is not accepted by many professionals. We are not going to wait until PDA is included to get started. We know it is "a real thing." We know that people need help now.

Although this journey is in its infancy, we are determined to make things happen. This website is a beginning step to get families the resources they need and create a cadre of professionals who will partner with them. Welcome to the PDA movement. It is going to be an exciting place to be.

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PDA is a newly emerging profile that falls under the autism spectrum. It's recognized as an extreme avoidance of everyday activities due to heightened anxiety. In the United States and Canada, most families and professionals have not even heard of PDA, Pathological Demand Avoidance.

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Fantastic guidance and resources if you're considering homeschooling

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Fantastic guidance and resources if you're considering homeschooling

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Well-curated list of resources for PDA-specific and/or homeschooling specific topics

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This resource consists of helpful approaches and resources to support parents who are home educating PDA children and young people. For general guidance and legislation about elective home education (EHE) in the UK please visit the relevant government website for your country below ...

... and organisations such as Educational Freedom, Education Otherwise, Home Education Scotland and Home Education Northern Ireland also offer information, guidance and support to home educating families in the UK (including the deregistration process). Other national and local home education support groups can be found online and on Facebook too and can be invaluable as a support network (groups suggested to us are listed below, under resources).

PDA Home Education is a third party run Facebook group specifically for people who are (or are considering) electively home educating a PDA child. It's a helpful forum for sharing ideas and experiences and for supporting each other.

The suggestions below are not exhaustive; there are no limits on the way learning can be achieved when you electively home educate and home education can look very different from family to family and person to person so it's important to remember that what might work for one family or child/young person may not work for another. It's about finding what works for each individual and tailoring the education to them personally.

You can approach this in any number of ways, and we've summarised some PDA-friendly ideas below. It may be that your child prefers just one type of approach or a mixture depending on the subject matter, and the approach they prefer may change over time too, so, adaptation, flexibility and listening to their preferences are key.

Be child-led
PDA children and young people need to see a meaningful purpose to learning something and tend to thrive when they're free to follow what they are passionate or inquisitive about or when something becomes relevant or useful to their lives. Following your child's lead and interests is therefore always a helpful basis for any approach.

It's also helpful to think about and accommodate your child's individual learning style ...

When do they learn best?
This might not be during typical school hours and it's helpful to make sure they have opportunities to learn when they want to/can (whether spontaneously or planned) and to build in plenty of 'downtime'

Where do they learn best?
Is this at home, inside, outside, a particular room or place of interest, in the car etc? Learning can take place anywhere including in informal settings. Your child may like to learn in a variety of different settings, or they might benefit from a designated learning space. It's important to ensure the environments support their sensory needs too

What are the best resources and tools they learn with?
Do they prefer books, worksheets, games, technology, visuals, online resources, quizzes or hands-on experiences etc?

Who are the best people they learn with?
Is there a family member, a friend or other people who they work well with? Or do they learn best on their own?

How do they learn best?
Are they active and need to burn up some energy in order to learn? Do they work best with multiple inputs to facilitate concentration (e.g. music/TV on in the background)? Are they a hands-on learner or do they learn from observing what's happening around them even if not participating?

What are their strengths and skills?

Tapping into your child's personal learning style and working from their existing strengths and skills will have a positive impact on learning.

Self-directed, autonomous & natural learning
Many PDA children and young people who are home educated prefer to be self-taught (autodidactic) and/or learn naturally through everyday experiences because direct or formal teaching approaches can intensify avoidance and rapidly escalate their 'fight, fight, freeze' response. Some key pointers around this approach include:

be a 'facilitator' in your child's learning rather than their 'teacher' (i.e. provide the resources, opportunities and experiences they need to follow their interests and learn)

learning opportunities can be found in everyday situations (e.g. low-key discussions and hands-on experiences)

many skills can be developed at the same time whilst enjoying a single activity (i.e. cooking can involve, science, maths, reading, fine motor and organisation skills) - see below for more ideas

value the importance of non-academic learning and life skills too

"I have found that trusting my children to learn is key. It is such a big jump from 'they must be taught' to letting them discover how to learn themselves but my son learnt to read because he needed to, to understand his computer games. The skill is transferable - it doesn't matter if he learns to read with Minecraft or Biff, Chip and Kipper! Someone described it as lighting a fire not filling a bucket ..." - Claire (home educating parent of a PDA child)

Collaborative learning
Learning collaboratively on a one-to-one basis or in a small group with trusted people can work well for some PDA children/young people. If your child would like to learn in this way, some key pointers include:

form an equal and collaborative relationship whereby you work and learn together

incorporate a meaningful activity or personal interest - see below for ideas

visual prompts or demonstrations can help to indirectly communicate instructions

third parties can help to de-personalise demands (e.g. "the cookery book says ...")

leaving out a few activities your child can choose from can work well

be flexible and adapt when needed

Curriculum or free-flowing
Elective home education doesn't have to replicate school or follow a specific curriculum, timetable or time frame and the flexibility of a more free-flowing approach to education, where learning opportunities are found in the moment, can work really well for PDA children/young people. Some helpful pointers include:

think about all the ways you learn and expand your skills and knowledge in everyday life as an adult - the same principle can be applied to your child's education

join your child in their activities and interests and help them get the most out of everyday experiences

look out for opportunities to indirectly help them expand on their existing knowledge/skills or introduce new ideas (e.g. share another perspective or ask an "I wonder" question out loud)

collaborate to find solutions/ways to do things

go with the flow when your child is ready or interested to learn something and follow their pace/keep it casual/no pressure

If your child would like to follow a curriculum or aspects of one, some helpful pointers include:

design a personalised curriculum with your child or collaborate to adapt an existing curriculum

look at the range of online platforms, resources and learning game website available to see if any appeal to your child (many offer a free trial and/or discount for home educators)

themed projects or unit studies that are tied into a current interest can work well - see below for ideas

being flexible is key and it's important to ensure your child maintains a sense of choice and ownership if opting for this approach

"We've had success in the past with a nature-based curriculum where we followed the seasons and did activities based on that throughout the year, but her best learning has been self-directed through games, reading, YouTube, conversations etc." - Katie (home educating parent of a PDA child)

Exams are not compulsory for electively home educated children and young people but your child can choose to do them as a private candidate if they wish - there's more info on the Educational Freedom website (including links to exam boards).

Capturing progress
If and how you record progress is up to you and your child. Records of work/activities/knowledge (e.g. photos, scrapbooks, written notes etc.) can help demonstrate progress and evidence skills and learning, but they aren't essential. The most important thing is that your child is progressing, and you can look for signs of this through the interactions, conversations and activities they take part in.

Utilising interests
Below are some ideas to consider and some examples of how your child's interests can be used to broaden their knowledge and learn naturally about other topics. All interests have learning elements and it can be really motivating to engage and join in with your child's enthusiasm - building their self-esteem and your relationship in the process - and learn together as it is highly likely they can teach you something!

Computer games: many skills can naturally develop through gaming - for example: reading instructions to progress through the game; spelling and typing in chat, commands or code; critical thinking, cause and effect, hand-eye co-ordination, interacting with people etc. Please see our online gaming page for further information including links to helpful websites and articles and a three-part video series by Max Toper, a young autistic adult with a PDA profile, about his experiences of the gaming world.

Famous people/characters: an interest in famous people or characters can lead to your child looking into the person's place of birth (geography); culture (history); fashion (design technology); factual information (general knowledge) and so on. You can help facilitate this learning which could be used to create a written biography or spoken presentation of the person if your child wishes.

Sport: data around league tables, results and player stats etc. can be used to develop maths skills.

Dogs (and other animals): if you or someone you know has a particular breed, your child could send its DNA for analysis (science); research the breed, what they were used for (history); where they came from (geography); how they came to exist (biology); write about them (English); working out fractions and percentages of different breeds and then make graphs and pie charts (maths, IT); and draw them (art).

A favourite film: could lead into some art-based project or writing about the characters with maybe a focus on adjectives etc.

Learning through everyday activities: cooking for example covers reading recipes or packets; writing shopping lists; adapting a recipe not only gives your child a choice and a feeling of control but develops their problem solving and independence skills; maths and science concepts are also covered.

Novelty: leaving new resources lying around for your child to see rather than showing them can spark their curiosity and the novelty of something different can inspire them to find out more. If they show an interest, it's best to go with it straight away if you can, as otherwise you may lose that moment and learning opportunity.

Science experiments: younger children especially may love the idea of science experiments. Guiding them into researching and watching YouTube clips on science experiments can lead to them creating their own experiments. A goal might be to help them experience a wide range of scientific exposure within their areas of interest.
Other tips:

breaking tasks into smaller chunks and doing the work together can be a successful approach

weave regulating tasks and activities throughout the day to help soothe the nervous system

consider what you can do outside to aid in getting fresh air - if your child resists, try finding a way to involve their interests e.g. use their iPad to take unusual, silly photos or go on a treasure hunt

explore the possibility of joining a local home education group which can be a safe place to socialise

monitor anxiety and tolerance levels and take time/days off when needed to help reduce any anxieties that may be building up

Interoception
Interoception is one of our 8 senses: it's our ability to notice our body's signals, understand their meaning and react in an effective way. Many neurodivergent individuals have differences in interoceptive awareness, which underpins many of our emotions and behaviours. The Department for Education in South Australia has a range of helpful, free resources on applying interoception skills to learning, including this Ready to Learn Booklet and Kelly Mahler's website is also very informative. Please see below for more resources.

Remember the PANDA
Our PDA Panda ambassador symbolises helpful approaches for PDA and the P A N D A mnemonic on our infographic provides a useful summary. Keeping these in mind in every aspect of supporting your child, including in their education, is essential for positive outcomes.

The resources available to home educating families are many and varied - this section aims to be a "hub" for families who are home educating PDA children and young people to find and share ideas. If you have any suggestions for helpful links please do let us know ...

Some of these ideas may need a little PDA/personal adaptation (see above for further ideas on this) and please consider carefully if a resource will suit your child - everyone's different so not all the resources listed here will suit everyone.
Blogs, case studies, groups & articles
PDA & home education

Other helpful links (not PDA specific)

Free and existing resources
It isn't necessary to invest lots of money in specific resources for home educating your child, there are lots of free resources available and it's possible to use and adapt the things you already have around such as games, puzzles, technology, Apps the internet, places of interest, libraries, YouTube tutorials TV/films/music, arts and craft material, people etc.

Other resources
The following list is a mixture of other free and paid for resources. Many paid for platforms and services offer a free trial and/or discount for home educators and there are discount groups you can search for on Facebook which arrange group subscription discounts.
Online learning platforms & Apps Projects/unit studies, printables & teaching ideas YouTube/online tutorials Subscription boxes Books Live online classes/tuition/mentoring

Gaia Learning - flexible online tuition (first lesson is free). Free resources also available

MindJam - online one-to-one emotional support and guidance for children and adolescents through gaming and game design

Curriculums Research Transitions

Transition to employment toolkit by Ambitious about Autism is a toolkit to support autistic young people into their first experiences of employment, further education or training
Interoception

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Elective home education - helpful approaches & resources for PDA This resource consists of helpful approaches and resources to support parents who are home educating PDA children and young people. For general guidance and legislation about elective home education (EHE) in the UK please visit the relevant government website for your country below ...

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Helpful approaches for parents and carers for PDA

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Helpful approaches for parents and carers for PDA

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https://tinyurl.com/2t94e5n6

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TONS of great insights and memes from Sallycat's blog.

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This blog article explores polyvagal theory in conjunction with PDA (pathological demand avoidance), and includes definitions for readers who aren't unfamiliar with terms used.

It explores how polyvagal theory can explain extreme demand avoidance, but not all of PDA. Those who are familiar with PDA, may have heard mentions of polyvagal theory in relation to it, but have struggled to make sense of it. This was my starting point when I came to write this. I felt polyvagal theory was something I *should* know, but felt helplessly demand avoidant against reading up on (such is the nature of avoidance of the PDA kind).

Thankfully, my desire to understand polyvagal theory eventually out-weighed my avoidance, and I approached Libby Hill of Smalltalk Speech and Language Therapy who specialises in PDA, situational mustism and polyvagal theory. More thankfully still, she agreed to co-author this article. It's an honour to collaborate with her because it was she who first alerted me to PDA in a series called Born Naughty! that aired on UK's Channel 4 in 2015. It's thanks to Libby, and the rest of the TV show's team, that many adults had lightbulb moments that PDA might, at last, explain their lifelong, misfit quirkiness. Some of us have gone on to advocate for PDA so awareness of our little-charted, invisible differences reaches even more people. I'm one of these, as is Riko Ryuki, who's blog you can view here.

Definitions

Autonomic ladder (polyvagal theory): a spectrum of nervous system states (with feeling safe and good at the top).

Dorsal vagal (polyvagal theory): a large, primitive part of the vagus nerve that controls body functions like digestion.

EDA (extreme demand avoidance): an alternative name put forward for PDA (pathological demand avoidance) in response to widespread discomfort with the term "pathological" which many consider derogatory. A champion of the term EDA was Liz O'Nions who developed a scale to measure PDA named the EDAq. EDA, however, may not fully describe PDA.

Fight / Flight / Freeze, etc: human and animal adrenaline responses which evolved millions of years ago in the animal as defence strategies to deal with threats.

Neuroception (polyvagal theory): our inbuilt threat detection system.

PDA (pathological demand avoidance):
i. a distinct neurotype (brain type) that's present from birth and is characterised by high anxiety; high personal control need; interest in people (which may become obsessive); fondness of novelty; strong, changeable emotions; using creative and/or social strategies to avoid demands; likelihood of being drawn to fantasy and role-play. PDA can be argued to fit the diagnostic criteria of the autism spectrum because it's a life-long neurological condition impacting social communication and flexibility of thought.

ii. a specific form of demand avoidance that gives its name to the PDA neurotype.

Polyvagal theory: a model, put forward by Stephen Porges in 1994, of tiered nervous system states, in which the ventral vagus system operates when all is well. Sustained trauma causes the ventral vagal to shutdown and the sympathetic nervous and dorsal vagal systems to become dominant (see below for a more detailed description).

Sympathetic nervous system (polyvagal theory): a network of nerves that are primed for the fight / fight / freeze reaction.

Ventral vagal (polyvagal theory): a nervous system that inhibits fight / flight / freeze via social engagement and self-soothing.

Polyvagal theory

According to Libby, if we look at the work of Deb Dana - who works a lot with Stephen Porges (the person who developed polyvagal theory) - when we're good:

We're operating at the top of the autonomic ladder

Our ventral vagal nerve is in control

We're relaxed

Can see possibilities

Move about the world in ease

At the same time:

Our sympathetic nervous system is buzzing along regulating our blood flow and heart rate

Our dorsal vagal system is keeping our body digesting, resting and restoring.

This is how it's supposed to work.

But, if our neuroception detects threat:

Instead of the good things listed above, we:

Feel unease

Lose cognitive abilities

Disconnect socially

Mobilise for fight, flight or freeze

Causes digestion imbalance

If both the ventral vagal and sympathetic nervous system shutdown, the dorsal vagal takes over completely and digestive/system responses dominate:

If the v entral vagal remains dominant, long-term issues may develop as the result of the body being in crisis for far too long (in a nervous system state it shouldn't be in). Possible health impacts are:

How poly vagal theory connects to PDA

PDA people have an essential need for personal control.

Libby explains that, according to polyvagal theory:

"Tolerance and control decrease as demands and anxiety increase. This can happen for anyone, but PDA people seem to be naturally primed for it."

Avoidance of the PDA kind is traditionally described as anxiety led need for control. This equation has, however, been brought into question by PDA people, such as myself and fellow blogger, Riko Ryuki, who say that, whilst anxiety is certainly a key trait of the PDA neurotype, our avoidance can trigger when we're not anxious. One thing that everyone seems to agree with is that much, much more research is needed before PDA can be understood

Regardless of how anxiety and avoidance truly interact, whenever a PDA person perceives something as a demand, their inherent avoidance drive gets triggered. In polyvagal terms, the perceived demand shits down their ventral vagus and activates their sympathetic nervous system, causing a feeling of intense ill-ease and mobilising us for fight / flight / freeze, etc adrenaline responses. As ever, more research is needed, but there's a growing body of PDA community members who believe additional "F" responses may trigger in place of fight / flight / freeze. There's more detail in this blogpost but, in brief, these are thought to include fawn (people pleasing), funster (playing the clown), fib (telling lies to escape being caught out) and flop (fainting or otherwise collapsing).

PDA people's proneness to adrenaline responses can, therefore, be explained via the polyvagal theory as demands causing our sympathetic nervous system to take over.

Autism and demand avoidance

Libby says:

"All autistic people can avoid demands if their neuroception detects stressors so their sympathetic nervous system takes over. This leads to avoidant reactions like withdrawal, shutdown and escape."

Whilst all people could respond similarly to situations they find stressful or difficult, autistic - and other neurodivergent people - are likely to be impacted by a greater number of things, and/or be more sensitive to common stressors. E.g.:

Situations which trigger anxiety

Sensory overload

Disrupted routine

Transition difficulties

Things of no personal interest

Libby's view is that when a person, autistic or not, is more avoidant than the social norm, this is EDA (extreme demand avoidance). This may seem nonsensical because the term EDA was put forward as an alternative to PDA. However, there seems to be a crucial difference, and EDA and PDA appear not to be the same thing (!) In Libby's view, the EDAq that Liz O'nions developed - which is the only scale so far available to measure PDA - doesn't measure PDA at all; only measures demand avoidance.

EDA versus PDA

PDA people can, and do, avoid things for the reasons listed above (sensory overload, etc), but we have specific PDA-type avoidance too. Libby thinks it's extremely difficult for people who aren't PDA to grasp what PDA-type avoidance is. After all, it's invisible. Libby says that a description I once gave of my PDA avoidance being like breathing strongly resonated with her and has remained in her mind.

Libby draws attention to Dr Judy Eaton' s work of 2021, which suggests that specific PDA-type avoidance is rooted in avoiding one's own demands.

This means that people can work as much as they can to reduce demands around us, but we PDA people will still be demand avoidant. Everyday demands might be avoided just because they're demands, but it's the expectation that something *should* be done that results in the inability to do it.

To put it another way, PDA-type avoidance is triggered by one's own expectations, or other people's expectations, which might not even be explicit; it could have just been implied.

So, for people with extreme demand avoidance, if you meet their needs, their demand avoidance goes away. But, with PDA, it keeps on going, unstoppably.

Whilst extreme demand avoidance is logical, as we've seen, PDA-type avoidance is very hard for someone without PDA to understand.

It should also be borne in mind that PDA, as a neurotype, entails a cluster of additional traits, such as social focus and propensity for fantasy & role-play. This will be the subject of a follow up blog article.
Libby believes that autism plus demand avoidance is actually very common, but PDA is, relatively, really rare.

Internalised PDA and my own thoughts on the EDAq

It's maybe worth mentioning that a growing number of adult PDAers, such as me, have been coming forward to say that we match all the traits associated with the PDA neurotype, but internalise our stress, meltdowns and avoidance strategies, etc so that the existence of our PDA is effectively hidden ( you can read more in a blogpost I wrote on the subject). I was concerned that the EDAq might not pick up internalised PDA, because it includes things like telling classmates what to do and social interaction having to be on "their own terms". Whilst we internalisers might be happy if these things happened for us, we'll be very unlikely to externalise our feelings, and be more likely to feel depressed and alienated because we don't comfortably fit in socially.

I contacted Liz O'nions in 2018 to ask if her EDAq scores internalised presentations of PDA, and she confirmed that it doesn't.

Another issue I have with the EDAq is that much of its wording is riddled with observer assumptions which make it a minefield for actually PDA people to answer honestly and still score enough to be, in the scale's words, "identified [as] those at high risk of showing features of Extreme Demand Avoidance".

Examples are:

"shows little shame or embarrassment (e.g. might throw a tantrum in public and not be embarrassed)"

"likes to be told s/he has done a good job", the latter giving a negative score for answering yes.

This is problematic because the reality of PDA is that, whilst we tend to find general praise squirmy, we often crave specific praise for things we've done.
As for Libby's assertion that it doesn't score PDA at all, my internal jury is out. Its criteria list does contain things that apply to the broader PDA neurotype, such as "invents fantasy worlds or games and acts them out" and "uses outrageous or shocking behaviour to get out of doing something", which aren't traits associated with autism in general. However, I agree that the EDAq fails to encapsulate what PDA actually is. It touches on it, but misses much.

Could a non-PDA person score highly enough in the EDAq to be "identified [as] those at high risk of showing features of Extreme Demand Avoidance"? Possibly, but I can't say for sure. As ever, more research is needed. What I can confidently say is that the wording of the EDAq will miss a lot of actual PDA.

Why polyvagal theory accounts for EDA but not all of PDA

We've seen that, according to polyvagal theory, perceived demands trigger PDA people's neuroception so our ventral vagal shuts down, and our sympathetic nervous system & dorsal vagal take over, leading us to be fight / flight / freeze primed and prone to developing chronic health issues, like irritable bowel syndrome.

We've also seen that EDA and PDA are different entities. EDA, aka extreme demand avoidance, can be experienced by anyone and is alleviated if needs are met so - in polyvagal terms - the ventral vagal nerve takes over running things.

However, what polyvagal theory doesn't explain is the cause of PDA-type avoidance. Its neurological origins and mechanics remain a mystery: why are we specifically triggered by things that we perceive as a demand?

Neither does polyvagal theory explain why removing the feeling of "demand" from something reduces our avoidance.

If PDA brains simply detect more threats than non-PDA brains, why does it matter if things do, or don't, feel like demands? Surely, we'd feel just as threatened by the idea of going somewhere if we didn't feel we had to? If the presence of demand makes no difference, then this is surely extreme demand avoidance, not PDA?

I think this is a crucial distinction. Unless the specific, irrational nature of PDA-type avoidance is understood, people won't credit PDA's existence, and we sorely need our existence credited.

Need for differential diagnosis

Libby is very concerned that, if diagnoses don't distinguish between EDA and PDA, we risk making the issue worse.

For example, if we were to use typical autism strategies for a PDA child, that would be dreadful. On the other hand, for children with extreme demand avoidance who are autistic, using PDA strategies could make things worse, because we wouldn't be giving them the structure or routine that they need to make them feel safer.

Correct diagnosis clarifies which approaches to use and should, in the ideal world, allow access to services. The key thing though is highlighting the radically different management strategies for school, and also home. PDA, after all, throws most parenting on its head. People need to grasp that, with PDA, it's "can't not won't".

This high need for differential diagnosis has led Libby and nine other professionals involved with PDA - including Phil Christie, Judy Eaton and Gloria Dura-Vila - to collaborate to put together a formulation to present to the diagnostic manuals. However, after two years, they've realised they're still far from achieving this goal.

The more they've looked at tightening the definition of PDA and making it more specific, the more they've realised it's not straightforward.

The presence of PDA is something they can feel, but this isn't tangible enough to put down on paper; it's not scientific; you can't put it in a manual.

For robust diagnosis - speaking of children - they need to be seen by more than one professional and in more than one situation. It's about listening and observing and taking everything in; not just what's said and done, but looking behind that. ADOS and DISCO ( more info) rely on parental reports, which is insufficient to distinguish between EDA and PDA. The Coventry grid is a good tool, especially the version of it Judy Eaton amended to look at PDA.

Another issue is that clinicians' knowledge varies (wildly). Many, for example, have no idea that there's a difference between EDA and PDA - and this is for ones who accept that PDA exists at all.

It's really early days and we've got to build on what we know.

Sometimes, if we say they need a bespoke package, this takes away the need to work out if it's EDA or PDA.

The team will be coming back to their collaborative mission to pin PDA down into a definition diagnostic manuals can accept.

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This blog article explores polyvagal theory in conjunction with PDA (pathological demand avoidance), and includes definitions for readers who aren't unfamiliar with terms used. It explores how polyvagal theory can explain extreme demand avoidance, but not all of PDA.

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For teachers who like mind maps
https://tinyurl.com/msjvd6xh

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What is PDA?

Pathological Demand Avoidance (PDA) is best understood as a profile on the autism spectrum - for more information please see About autism & PDA.

Our Being Misunderstood report highlights that 70% of children with a PDA profile of autism are not in school or regularly struggle to attend. This figure is much higher than for the Autistic population as a whole, and shows how challenging school can be with PDA.

You may have a child in your school whose presentation is hard to understand, who may not respond to conventional teaching approaches (as highlighted in this article in SEN Magazine) and whose behaviours may differ considerably between home and school. If so, exploring whether a PDA profile of autism could be an underlying factor may hold the answer and signpost a way forward.

How PDA may look in school

This information has been adapted from the Autism Education Trust's guidelines: The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice.

Some key characteristics of a PDA child at school, diagnosed or otherwise, may be:

A desire to be on a equal or superior to others - a PDA child may see themselves as equal to adults and not confer 'automatic respect' due to someone's job title

A poor sense of self-esteem - this may not always be immediately apparent as sometimes surface behaviours may seem to be robust

Very poor emotional regulation; extreme/sudden 'mood swings'

An ambivalence about success, typified by a child who destroys his/her work on completion especially if praised

A lack of permanence and transfer of learning and experience; sudden/dramatic setbacks after periods of settled behaviour and progress

​A desire for friendships, often inadvertently sabotaged through a need for control

​Extensive involvement in fantasy/role play

Meltdowns/shutdowns/behaviour that challenges - or equally a child may mask and internalise whilst at school (please see below)

It is not uncommon for children with PDA to experience multiple exclusions from an early age.

Masking

Some autistic people are very adept at masking, and this is very common with PDA. Masking means that people may be able to hide or 'hold in' some of their differences/difficulties in certain environments or with certain people. Significantly, this means that challenges reported in one setting (often home) may not always be seen in others (such as school or other settings). This can and does lead to misunderstandings.

For further information about masking, please see:

Some children can continue to mask throughout school; some children find it harder to continue to mask especially as their peers become more socially sophisticated and school life becomes more demanding.

Attendance difficulties

As mentioned above, our Being Misunderstood report highlights that 70% of children with a PDA profile of autism are not in school or regularly struggle to attend.

School avoidance (also known as school refusal) - when a child is unable to attend school due to anxiety, phobia or trauma - should be treated as a health and/or SEN need. If a child isn't attending school because his/her special educational needs can't currently be met, the school and/or LA should be looking to provide suitable provision as soon as possible.

Neither situation should be viewed as truancy. The National Autistic Society provides useful information to help everyone understand difficulties with school and 'school refusal' - though p lease note that the strategies suggested would require considerable adaptation for a PDA child. Fran Morgan from Square Peg talks about the barriers to school attendance in this Educational Psychology Reach-Out presentation.

In this podcast, 15 year old James shares his thoughts on why school is difficult for young people with a PDA profile. He openly talks about his experience of school and the daily challenges around demands, masking, sensory difficulties, school avoidance, friendships and transitions. He also offers some possible solutions and tips for teachers, and shares some coping strategies that have helped him along the way.

Working with families

Believing, supporting and working closely with families is key to successful inclusion of pupils with a PDA profile of autism.

Good practice & helpful approaches

Working with PDA as a teaching professional is both challenging and rewarding. Browsing the available resources may give valuable insights - some have been tagged as being especially helpful for teaching professionals including:

Jilly Davis explains how to recognise pathological demand avoidance and offer effective support and strategies in this Teachwire article.

In partnership with Twinkl, the PDA Society has co-produced 5 PDA resources for teaching professionals which are FREE to download from Twinkl's website. The 5 resources are a 'deep dive' into the theory and practice behind our PANDA approaches and offer schools and educators lots of helpful classroom support approaches as well as top tips and insight from PDA learners.

We also recorded this podcast about how educators can support PDA learners to thrive for Twinkl SEND in the experts: "We have to acknowledge their learning differences, we have to change the way we teach" (Pathological Demand Avoidance (PDA))

PDA Society Trustee Jilly Davis also talks to The ALT:learn Podcast about recognising and supporting PDA learners.

Ruth Fidler talks about teaching strategies for PDA in this Beacon School Behaviour Secrets Podcast episode.

Whole-school training in helpful approaches with PDA is invaluable - courses are provided by the PDA Society and third parties, please see our training pages for more details.

The CAST Universal Design for Learning framework guides the design of goals, assessment, methods and materials that can be customised and adjusted to individual needs and to help make learning inclusive and transformative for everyone.

The book, Square Pegs: Inclusivity, compassion and fitting in - a guide for schools by Fran Morgan, Ellie Costello & Ian Gilbertand, isn't PDA-specific but includes lots of helpful ideas that would benefit PDA learners.

Benefits of understanding the PDA profile

All research points to early understanding of strengths and needs, together with appropriate support, being key to positive long term outcomes.

We thought Zoe may be autistic but her needs were very different to other autistic pupils we had supported in school before, and none of our usual approaches helped. Searching for answers led us to PDA. Seeing Zoe through this lens enabled us to truly understand her and successfully adapt our practices by building trust and embracing a flexible and collaborative approach - Zoe's teacher

Please see Benefits of understanding the PDA profile for more information.

Further information

In addition, we'd like to draw your attention to these additional sources of information, topics or fields of study which we feel are helpful in furthering understanding about PDA.

PDA Education support group is an informal Facebook group (independent of the PDA Society) where educators can share ideas, strategies and seek support from each other.

For further information about any aspect of education and PDA please contact our enquiry line. We offer a range of training courses and a series of pre-recorded free of charge webinars. We can also provide a 60-90-minute online consultation, for up to 5 education professionals, to work through perplexing situations involving young people in their setting with a PDA profile. For more information on this service including cost please email: training@pdasociety.org.uk.

Recordings of our past Q&A sessions, where guest speakers with lived experience answer questions about PDA and education, are available to purchase for 30 days via our training hub:

The PDA Society also offers email updates for professionals. To subscribe to receive updates about the latest news, resources and events relevant to professionals, please click on the button below:

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Working with PDA - information for education professionals

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Information for education professionals What is PDA? Pathological Demand Avoidance (PDA) is best understood as a profile on the autism spectrum - for more information please see About autism & PDA. Our Being Misunderstood report highlights that 70% of children with a PDA