# data[].attributes.body
This website from Australia shares some helpful ideas and mindset approaches for the summer holidays.

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Dr Nicole Carvill - Director, Think Psychologists

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A roadmap to planning summer holidays as a PDA parent

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For families with children who are neurodivergent or might have PDA, managing the holiday period can be stressful. Read our tips and tools for…

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Supporting sleep for autistic children in the hot weather, particularly those with a PDA profile

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Supporting sleep for autistic children in the hot weather, particularly those with a PDA profile

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A blog entry from Steph Curtis, mum to a PDA-er, with some timely tips on supporting sleep in the hot weather.

# data[].attributes.attachment_link.title
How to help children get to sleep in hot weather

# data[].attributes.attachment_link.description
Suggestions of ways to help sleep when it’s hot

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PDA Society - Pathological Demand Avoidance

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Transitions and routine with PDA - PDA Society

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Beginnings, endings and moving from one task to another can be difficult for PDAers. If this is something you or your PDA child experience, you are not alone.

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PDA best practice - what the professionals would like you to know

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Listen to episode 1: Draw the World Differently: Eliza Fricker on Raising a Neurodivergent Child. This episode is focusing on parenting a PDA child.

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What exactly is Pathological Demand Avoidance (PDA), and how should you support a child

with this profile?

Izzy sits down with bestselling author, illustrator and advocate Eliza Fricker who has spent years working as a consultant for PDA, Autism and Learning.

Discover how to adjust your child's routines to allow for better decompression, why traditional rules don't work in many neurodivergent households, and how humour can be a game-changer for empowering your child.

Follow us on Instagram: https://www.instagram.com/letstalkndkids

Email: hello@letstalkndkids.com

Lets Talk Neurodivergent Kids is a Viral Tribe Entertainment Production

Executive Producers: James Carpenter & Jon O'Donnell

Producer: Connor Gani

Production Coordinator: Vic Amott

Video Editor: Alistair Nolan

Social Media: Oliver Francis

Learn more about your ad choices. Visit podcastchoices.com/adchoices

# data[].attributes.attachment_link.title
Draw the World Differently: Eliza Fricker on Raising a Neurodivergent Child

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What exactly is Pathological Demand Avoidance (PDA), and how should you support a child with this profile? Izzy sits down with bestselling author, illustrat

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(Pathological Demand Avoidance)Christmas; ‘the most wonderful time of the year’ as Andy Williams once sung. But, as we all know, with the run up to Christmas, family gatherings, gift shopping, cooking the turkey, fighting siblings, etc. Christmas can be a stressful time for everyone, but especially so for Autistics and PDA individuals.I am going to go through the different stressors, triggers, and potential overwhelm or meltdown scenarios in this article, but please note that

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Tips for helping a child with Pathological Demand Avoidance at Christmas time

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SASS have not checked each individual link/resource

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SASS have not checked each individual link/resource

# data[].attributes.body
SASS have not checked each individual link/resource

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Guidance for EHCP outcomes for a PDA profile

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Guidance for EHCP outcomes for a PDA profile

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PDA & school avoidance with James by PDA Society Podcast

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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.
A transcript of the episode is also available here: PDA & school avoidance podcast with James
More about James’ experience of PDA is available on our website, including:
PDA & masking with James (video): https://www.pdasociety.org.uk/resources/pda-masking-with-james/
James’ story (case study): https://www.pdasociety.org.uk/resources/james-story-2/
Further information and resources about PDA for education professionals are also available on the ‘Working with PDA’ pages of our website: https://www.pdasociety.org.uk/working-with-pda-menu/

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Helping parents of PDA children and teens gain the clarity and paradigm and mindset shifts they need to bring their family more peace.

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'Pretty Darn Awesome' is a story about a little boy with Pathological Demand Avoidance - a not so well known profile of the autistic spectrum. It looks at his daily struggles but more importantly his amazing strengths. A useful introduction to PDA and a way to share it and explain it positively to children, siblings, family members, teachers and classmates.

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Pretty Darn Awesome: Divergent not Deficient: Understanding Pathological Demand Avoidance on the Autism Spectrum

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'Pretty Darn Awesome' is a story about a little boy with Pathological Demand Avoidance - a not so well known profile of the autistic spectrum. It looks at his daily struggles but more importantly his amazing strengths. A useful introduction to PDA and a way to share it and explain it positively t...

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We often during calls, share information about PDAers with families who are finding it really difficult to get the support they need for their child, AND the understanding they need for themselves.

If you believe your Autistic child is a PDAer, please take a look at their EHCP.. If Section F is filled with demands like:

Bobby will work with a TA on an adult led task not of their choosing for 20 minutes

Bobby will join in a social skills group with 5 other children X times a week with X amount of children..

Bobby is likely to regularly find this unbearable and very quickly feel unable to attend school due to the anxiety these demands place on him...

We do see lots of good EHCPs written by professionals who are trained in PDA and truly understand a self led, low demand approach..

It is possible for your PDAer to feel respected and safe in education. Don't give up. xxx

We hate SPAM. We will never sell your information, for any reason.

# data[].attributes.attachment_link.description
We often during calls, share information about PDAers with families who are finding it really difficult to get the support they need for their child, AND the understanding they need for themselves. If you believe your Autistic child is a PDAer, please take a look at their EHCP..

# data[].attributes.attachment_link.readable_text
In this episode, I talk about way the Autism spectrum is more round than linear. The Autistic Experience can be vastly different between one autistic individual to the next, and this is an important topic to consider. Mentioned in this episode is Aucademy aucademy.co.uk/ For a far more brilliant explanation of what Autism is check out the "What *is* autism really" recording on the Aucademy Facebook page. It's a long one, but worth the time. A transcript of this episode can be provided by contacting me at perpetuallydeterminedadvocate@gmail.com

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Sibling Dynamics by PDA, Neurodivergence & the Perpetually Determined Advocate

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This anniversary episode going out on PDA Day talks about the interaction between siblings of PDAers, and I had 2 special guests help me out with this.

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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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In this powerful four-part podcast, Eliza Fricker shares her experience, and that of others, to reveal the difficult process of getting an autism diagnosis, what this means in our current education system, and asks, can we find a better way?

Currently almost two million children are regularly absent from school. Many of these will have special needs - making going to school a stressful and distressing experience. But in a system that prizes attendance over wellbeing, autistic children are forced into an environment that makes them unwell. Parents who want to safeguard their children are fined for non-attendance, and face an expensive uphill struggle to find alternative ways to educate their children. Yet there are other ways, including schools that focus on strength-based and autonomous learning. It's in a setting like this that Eliza has seen her child heal and thrive.

With the help of leading autism experts Eliza explores the pressure to "fix" children to fit in and how many children are masking their true self to survive at school. She looks at alternative ways to educate children who don't thrive in the mainstream model. And in light of the growing mental health crisis among young people, asks how far the UK school system is out of date and in need of reform. Are schools failing not just autistic children, but everyone?

All episodes are available to stream for free from all major podcast distributors, search Missing the Mark wherever you get you podcasts, or use the links below.

PRESENTED & PRODUCED BY ELIZA FRICKER.

WITH CONTRIBUTIONS FROM: KIERAN ROSE, GRAHAM BROWN MARTIN, LIZ SOPER, DR NAOMI FISHER.

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Eliza offers a range of support for parents and educators on navigating autism and education

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Let's talk about the concept of Pathological Demand Avoidance (PDA), though I prefer Tomlin Wilding's interpretation: Pervasive Drive for Autonomy. I prefer this name because it is less judgmental, but also because it focuses less on demand avoidance (which can be caused by an endless number of things) and more on the core issue: the drive for autonomy.

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Time flies, as the saying goes, and I can hardly believe it's been nearly six years since I wrote a post on this blog titled ' Strategies for PDA'. That post was written with the intention of supporting parents and carers to find ways to help children with Pathological Demand Avoidance, using my seven years of experience of parenting our own PDAer at that time. It is in the list of Top Ten PDA posts on my blog, but for a long time now I have cringed at the word 'strategies' in the title. 'How to help' covers the same topic and expands on some of those ideas used first time around.

Language is important. 'Choose words carefully' is in fact one of the tips I wrote in my 'strategies' post and there have been many times over the years when that phrase has jumped back into play in terms of my blogging. I may not always get the words right, but I do try to construct my posts with thought and consideration. I didn't realise at the time of writing my original post that the words 'strategies' would have negative connotations for some but now I know, I will try to find alternatives.

Strategies perhaps gives the impression that others are trying to manage or manipulate PDAers. Manipulating them into doing what the parent/carer or educator wants rather than doing what is best for them. I don't believe this is always the case or that everyone who has searched the internet for PDA strategies is intending to 'manipulate' in this way but I still think it best to rephrase. I suspect that is why the PDA Society chose to embrace the word ' approaches' in their articles about this matter. I'm plumping for 'how to help' this time around - and I think that by helping our children, we in turn help ourselves and our wider family, so that's a positive outcome!

Whatever we call them, I think the ways to help that are outlined in my original post are still very relevant and worth a read. As a quick summary, I'll list the headlines here:

be flexible

build relationships

plan ahead

offer choices

choose words carefully

use humour

remain calm

reduce demands

pick your battles

tread carefully with routine

These ways to help were originally aimed at parents and carers in the home but they should also be adopted by educators and staff in school settings, by the wider family, friends, neighbours, in fact anyone who is lucky enough to come across a PDA person! With this post, I'm trying to expand a little on some of the ways of helping and to explain why.
Learn more about PDA; then become a detective

A good starting point in terms of how to help is to learn more about Pathological Demand Avoidance as a whole, in order to understand better. My post listing some of the best books on PDA could be one place to begin. The next step: I think every one of us needs to become a detective with regards to our own PDA child (or the one you are working with), to discover what the issues are, and what is actually causing the unwanted behaviour. At the same time, we should also question whether 'the behaviour' is actually as bad as we think it is. Clearly violence and hurting others is unacceptable, but if the behaviour you think needs stopping is too much screen time, for example, then maybe it's time to rethink why?

No strict, unnecessary boundaries

In our house we found one way to help was to not impose strict, unnecessary boundaries. In my post ' Autism, Gaming and Screen Time' I wrote about the screen time issue, a common clash point in many families. We don't limit screen time, which I know will make some people gasp in horror. Our daughter uses screen time to both regulate herself and to learn about the world. Instead of assuming it was bad for her, I took the view that it could actually enhance her life. I'm not suggesting it would work for every family to allow unlimited access but for some, easing off on those restrictions could create a big drop in the amount of extra pressure. Far from being a lazy attitude, this was a considered decision and one which has enabled our daughter to teach herself skills in digital art and creating animation videos far beyond anything I could have taught her. (See an example below but please don't leave a comment there unless you are under 25 and have a genuine interest in what she's talking about!)

Avoid rewards and consequences

Another way we try to help is by avoiding the typical parenting strategies of rewards and consequences. More specifically, rewards which involve an ongoing, longer term commitment and consequences which are actually punishments. Why? Because they create unnecessary pressure and rarely achieve the expected/desired result. Immediate rewards and natural consequences can work though, sometimes. I expand on this in my post ' Rewards and Consequences with PDA'.

Change Your Lenses

Dr Ross Greene is a clinical psychologist who has been working with children and families for over 30 years. He believes in working collaboratively and proactively with children to find out what the problems are and how to solve them. His website, www.livesinthebalance.org is an amazing resource packed full of free, helpful advice for parents and families, educators and schools. He explains:

Kids with concerning behaviors aren't lacking motivation, they're lacking skills, especially those related to flexibility, adaptability, emotion regulation, frustration tolerance, and problem solving. They aren't attention-seeking, manipulative, coercive, or unmotivated. They don't need more time-outs, detentions, suspensions, expulsions, paddling, restraints, seclusions, or police referrals. Those interventions just push them out and away. They do need adults who know how to collaborate with them on solving the problems that are causing their concerning behaviors.

The first step of his advice is to ' change our lenses'. By that he means we should question our beliefs; instead of labelling children naughty or oppositional, for example, and assuming they are being awkward for the sake of it, we should figure out why they display certain behaviours. And then we should work with the child to find a solution that works for everyone.

Dr Greene gave me much food for thought in the early days when I first heard about him and his website. He led me to question 'why?' more often. Why do we expect children to sit at a table and eat the same meal as we eat? Why do we force them to make polite conversation with family they rarely see? Why do we say they have to go to school? Why do we want them to have early bedtimes? Why should they have less screentime?

A lot of the time, the answer is because society expects it. As parents and carers we start off family life expecting to bring our children up in a certain way. That could be similar to how we ourselves were raised as children, or in a completely different way, by those who felt their own childhoods could have been improved. But we generally do have certain rules and boundaries in mind.

Reduce demands

All of those 'why' questions above cover the kind of parenting I thought I would be doing - typical parenting, with typical, traditional rules. We quickly learned that for our daughter with PDA, imposing those kinds of demands led to extreme upset. Not because she was spoilt and didn't want to follow them, but because they increased her anxiety levels. So we learnt to think carefully about what is possible, what is necessary and what might be achievable, and we have reduced the number of everyday demands we place on our daughter. Teeth brushing is one such demand; as much as I'd have liked it to be a daily event, it is currently too much of a demand for our girl. So we do it as and when we can, when her anxiety and stress levels are low. I'm not suggesting everyone does this (as I hear dentists across the land take a sharp intake of breath), but for our girl who doesn't eat sweets and only drinks water, and has never had a filling, not brushing her teeth every day is something we can live with. Every family needs to find their own balance of what does and doesn't work for their children. I'm just here to remind you to ask 'why' a little more often. Why are you placing those demands on your children, and are there some you can ease up on?

It really is so difficult to explain PDA to those who don't live with it. I'm not sure I'm doing a great job here because I can somehow still imagine the confusion, the eye-rolling and the use of the phrase 'picking and choosing'. So I'm hoping this might help: the following account, written by Rach B, a parent of a child with PDA, recently posted in a Facebook group. I asked if I could share the words here as a great example of doing things differently to what's expected or reacting in a different way to our first instincts.

Today when I woke my 12 year old PDAer for school I was greeted with "f#*k off I'm tired!"

Before understanding PDA, and before I changed how I view behaviour, my response would have been three things:

1. "Don't speak to me like that!"

2. "We're all tired but it doesn't mean we get to stay home all day, now get up or you'll be late!"

3. "Don't worry about your hair, school isn't a beauty contest"

This would have caused her to meltdown and not make it to school at all. Her anxiety would be high, she would be disappointed in herself for not being able to manage it, and it would make the next day even harder as well as damaging our relationship. I would have spent the day frustrated and stressed.

But that didn't happen today because a) I understood that there was something else going on, something deeper and b) by changing how I deal with 'challenging' behaviour my relationship with my daughter is stronger and she trusts me more.

So this morning I didn't get mad because she used bad language. I validated her feelings. I told her I understood she was tired and explained the first day back after the holidays (the day before) is always more tiring so it was natural for her to feel tired today. I told her there was no rush and I could help her to get ready. I made sure she was aware that I respected her need to wash her hair; after all I wouldn't go out with greasy hair, so why should I make her do it?

She shouted again that she wasn't going but this time she followed it up with "I'm tired, my hair is greasy and I need breakfast but there isn't time!"

Now I knew that being tired wasn't the only problem. She didn't really want to stay home but actually she was overwhelmed with all the tasks she needed to do in order to get ready. So we broke it down and I reminded her there was no rush, that it was ok to turn up to school a little late. She managed her bath by herself and washed her hair but then she was done. So I stepped in, I got her clothes ready, I dried and brushed her hair, packed her bag for school and then she got dressed and did her teeth.

It's easy as a parent to become frustrated when your child 'won't' do things they usually do fine. In these moments it's important to realise they are not willingly not doing these things but that actually in the moment they can't. Their ability to complete tasks is not static. It will fluctuate based on internal and external factors.

Once ready we popped to the shop for a drink and breakfast. An incentive helps her on those tricky mornings, and then we went to school. She was only 20 minutes late (I had emailed school to let them know) and she went in happy and calm.

18 months ago I wouldn't have been able to write this as I would have been in the middle of trying to deal with her meltdown, assuming she was being oppositional and trying to force her into school.

It makes such a difference when you change how you view the behaviour and also turn detective. This morning's 'refusal' actually started yesterday, you see. She was exhausted after her first day back and fell asleep early evening. This upskittled her usual routine and she didn't get her bath and hair washed, then also found it difficult getting to sleep early enough. Hence the tired and needing to wash hair this morning. Tonight I'll be more available during her evening to help her stay on track. I'm usually fairly distant unless called upon as this is how she prefers things and generally she knows what she needs to do and does it. Tonight though I'll help her recognise what she needs to do.

I hope this helps someone who feels like life is a constant battle. Things can get better, they just take time and consistency.

I think this is a great example of how it helps to 'change our lenses' and to use a different approach to what we might typically have expected to do. Because to be honest, if the approaches we currently use aren't working, maybe it is time to try something new?!

To read more about our experiences and what has helped over the last 14 years, why not try our recently published book, PDA in the Family? Our PDAer's Dad wrote one of the chapters in it.

Out now in paperback, kindle and audiobook versions - I was pleased to be able to record the audio for most of this book, Mr C recorded the audio for his own chapter!

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How to help children with Pathological Demand Avoidance (PDA)

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Time flies, as the saying goes, and I can hardly believe it's been nearly six years since I wrote a post on this blog titled ' Strat...

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Welcome to Positively PDA, I am Melanie, mum to three boys, 2 crazy dogs and a pretty clever cat. I am passionate about changing perspectives and understanding around autism and specialise in the profile of PDA (Pathological Demand Avoidance).

PDA is currently understood to be a distinct profile on the autism spectrum, characterised by an anxiety driven need to avoid every day demands and expectations and maintain control. The approaches needed to support a young person with PDA vary significantly from more typical approaches and autism strategies and require a very flexible, collaborative and negotiative style. This style also requires a shift in perspective away from behaviour modification, and towards addressing and reducing underlying anxiety, but when day to day demands and expectations create significant anxiety and push individuals towards the fight, flight, freeze response where do we start and how do we implement change?

That's where I come in as a PDA Parenting, Inclusion and Intervention Consultant. My middle son who is 18 has a PDA diagnosis and I have a wealth of experience in successfully implementing PDA friendly approaches with him. We moved from being at crisis point in 2012 having experienced several years of extreme behaviour which I couldn't manage, to having a self aware and self regulated young man who is engaging in learning and has a bright future ahead of him. I also have experience working with young adults with a variety of special educational needs including autism and PDA in a local college, and have accredited qualifications in Understanding Autism, Supporting Children, Teenagers and Young Adults with Pathological Demand Avoidance, NLP, Hypnotherapy and Coaching and studying towards a degree in Psychology. I have delivered PDA training and workshops to parents, carers and educators, and run, moderate and admin various support groups online.

I work with parents and schools to understand the challenges that are being faced and provide solution focussed advice based on my sound understanding of the PDA profile and the approaches that are most beneficial in supporting the young person. I also provide therapeutic intervention for neurodivergent adults, children and young people and their families to support them with making positive changes to their lives.

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Positively PDArSUPPORTING PARENTS AND EDUCATORS OF AUTISTIC CHILDREN WITH PATHOLOGICAL DEMAND AVOIDANCE

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sr Dealing with challenging behaviour on a regular basis is exhausting especially when nothing you try seems to work, leaving you feeling completely lost. Challenging behaviour that is commonly seen in individuals with Pathological Demand Avoidance (PDA), requires a very different approach to typic

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Debbie Reber 00:00

Tilt Parenting is proud to partner with Fusion Academy this season. Fusion Academy is a private, middle and high school with one on one classrooms to meet students exactly where they're at, academically, socially and emotionally learn more about the most personalized school in the world and how they've changed the lives of 1000s of families, including mine at fusionacademy.com/tilt.

Eliza Fricker 00:22

You're living with an enormous amount of uncertainty because you always have to be extremely flexible. So there aren't strategies that you can use that are failsafe and you stick to those and it's going to work. It changes continually, because within that you've also got a person who wants that autonomy over their situation. So if there's any moment where they feel that that autonomy is being taken away from them, then they'll need to change that up again.

Debbie Reber 01:00

Welcome to Tilt Parenting, a podcast featuring interviews and conversations aimed at inspiring, informing and supporting parents raising differently wired kids. I'm your host Debbie Reber. On today's episode, I'm talking with Eliza Fricker about PDA, an acronym that technically stands for pathological demand avoidance, although I know many people who interpret PDA as a persistent desire for autonomy. I've done a few episodes on PDA before I'll have links to those in the show notes, but never from a parent's perspective. So after reading a licensed insightful book, The Family Experience of PDA, I knew I wanted to share her perspective with this community. During the episode, Eliza and I talked about how demand avoidance is more extreme in a child with a PDA profile, versus the inflexibility or rigidity we might see in other neurodivergent kids. We also get into what Eliza has learned about herself parenting a child with PDA, and what her resistance was to the changes needed to her parenting style. She also shared some great tips for teachers who have a PDA student in their classroom, and for parents who are struggling with family, friends or people close to them, who aren't willing to understand what PDA is and what that means for their family. Let me tell you a little bit more about Eliza before we get into the show. Eliza Fricker is the illustrator behind Missing the Mark, a deeply personal and human exploration of a mother's journey navigating the education system and everyday life with a child who can't go to school. In addition to writing the family experience of PDA, Eliza has also launched a limited run companion MISSING THE MARK podcast and launched a series of talks, consultations and online courses to support parents who are in similar situations. Her latest book Can't Not Won't will be published by Jessica Kingsley publishers in December 2022. And if you live in the US, Eliza will be joining two other experts on PDA, Harry Thompson, who has also been on the show before and Laura Kerbey for a US tour this fall. And they'll be hosting these live events about PDA in Miami, Southern California, St. Louis and New York starting November 2. So the tour is being hosted by NEST which stands for neurodivergent education, support and training. To learn more and get tickets visit n-est.org. That's n-est.org. I'll also have a link for that in the show notes page for this episode. Lastly, if what I'm doing until parenting and the guests I bring onto the show are providing support and encouragement and hope for your family. And you're ready to dive deeper with me and uplevel your parenting progress. I invite you to check out my high touch membership community, the Differently Wired Club. Think virtual office hour calls, coaching calls, expert guests monthly themes connection with other parents like you and much more. I used to only open the doors three times a year. But now there's an enrollment window open at the end of every month. Just visit tiltparenting.com/club for all the details and to get pre registered today. That's ttiltparenting.com/club Thanks so much. And now here is my conversation with Eliza.

Debbie Reber 04:38

Hey Eliza, welcome to the podcast.

Eliza Fricker 04:40

Thanks for having me.

Debbie Reber 04:42

I'm really looking forward to talking about your work and your book. I have done a few episodes on PDA but not from the parent perspective and you have such a unique lens and your book is amazing and the way that you can share this experience in such an accessible gettable way. I'm just thrilled to be able to share this with my listeners. Before we get into that, can you take a few minutes and just introduce yourself? Tell us a little bit about your personal why and who you are.

Eliza Fricker 05:10

Yeah, sure. So my name is Eliza Fricka. And I am an author and illustrator. And I started out actually illustrating my blog a couple of years ago, which is called MISSING THE MARK dot blog. And that was really, I had a background in design and illustration, but then my child became too unwell to go to school. That was really the blog was to help me process eight years really of struggling within the education system and the systems of support. So for me, my medium has always been illustration. And that helps me to process things. So I started with missing the mark. And it was from there that I was asked to write a book about PDA. And things have kind of escalated within the realm of writing about all sorts of things within the education system and neurodivergence. So yeah.

Debbie Reber 06:11

I often talk to people on this podcast whose personal world has kind of meshed with their parenting worlds and collided in the best possible way. And it really seems like that has been the case for you. Although I imagine this wasn't part of your big career plan when you became an illustrator.

Eliza Fricker 06:28

No, it wasn't, I think something that I found very difficult to access within that world of parenting, particularly a child with extra needs was any positivity, it was quite gloomy. And I'm not a gloomy person. So for me, being able to put that empathy into those drawings. And the humor as well was really important. I want to share positivity. And actually, what's come out of this, and the work that I do feels so much more meaningful than when I was designing wallpaper and working in that world, which now I still buy the interior magazines, and they feel quite empty to me now home. But that was so vacuous and shallow compared to what I do now. I love bringing positivity to situations. And there always is. And I think that that's what I try and show as my work is that actually it's the systems that are disabling. And we have to find our own way of doing things that works.

Debbie Reber 07:29

So when you started Missing the Mark, how many years ago was that? You got a book deal out of that. So you drew attention. But what was the response from people who found your blog and found that it really resonated with them?

Eliza Fricker 07:43

Yeah, so I think I started it in about 2019. And again, that was the other side of it was that for me, it was incredibly isolating our experiences, when you're standing at that school gate, and you're under that gaze and comparison of other families and other parents, you do feel quite other. And I was amazed when I started drawing it, how many people got in touch with saying, this is our life. Thank you for drawing this. And that connection that came about and the people that I've met through drawing this just to help other people feel less isolated, because often the situations that I'm drawing are incredibly difficult to convey to even friends and family. And I think there's some way that the drawings given much more of an insight into it than a long ranty email to a relative or professional, which we've all done many times within this journey.

Debbie Reber 08:40

Yes, for sure. listeners will get into the book. It's called the Family Experience of PDA: An Illustrated Guide to Pathological Demand Avoidance. But you just have such a way of capturing this experience with very few words and deeds, situations that you instantly get, and it is so powerful and refreshing. And so what a great tool for people to have to be able to say Here, read this and you'll really get what we're going through. I would love to know, in your experience, because I think there are people who don't quite get PDA, could you talk a little bit not necessarily the difference between a PDA profile and a neurotypical kid but even within neuro divergence, what is it about PDA in your experience? That is kind of more extreme?

Eliza Fricker 09:28

I think you're living with an enormous amount of uncertainty because you always have to be extremely flexible. So there aren't strategies that you can use that are fail safe and you stick to those and it's going to work. It changes continually, because within that you've also got a person who wants that autonomy over their situation. So if there's any moment where they feel that that autonomy is being taken away from them, then they'll need to change that up again. So that's what you're doing constantly, you're constantly assessing the way that you present things, your language has to be indirect all the time. So you've got that one element, then you've got to consider how that activity or that day is going to go and what those variables are. So I think a lot of it is things that they're not seeing. And the things that you're internalizing as the caregiver, you're constantly assessing and trying to gauge what level they're at and what their tolerance levels are. So all of that's going on for you internally. And that takes quite a lot to do that all the time. And that's why it's very difficult, in an educational setting for them to be able to do that, particularly when they're working within they have their ways and their ways of doing things. It's only really in the home where you can do that constant flex, which is needed.

Debbie Reber 11:00

Yeah, I mean, what you're describing is just so much kind of behind the scenes work. And I imagine it requires so much presence, right? We talk on this show about showing up for your child every day, and trying to be as present as possible. But again, you illustrate this so beautifully in the book, it is such an intentional presence and requires a lot of use of flexibility, just being nimble, just being able to kind of go with the flow. If you're willing to share just personally for you, did you have resistance to making that pivot and parenting in that way?

Eliza Fricker 11:34

Yes, I did. I think for most parents, we've grown up with certain constructs and beliefs around parenting. And I think for most of us, there is a shedding of, by historical how we were brought up, we have to do an element of that. And I think actually, the way that I look back at it, I would say that we started on a route of quite connected parenting, we were co-sleeping, it was all quite gentle. It was because of my job that afforded me to be at home most of the time. It then change when those systems came in when nursery school came in, and when school came in, because they were very much set systems. And they that was when we saw that it wasn't working. But we had this new narrative coming in, where they should be able to do that. You should leave them, you should toughen up, we had all those narratives coming in which they work with you, you know, you end up questioning what you're doing. And I think that's the most tricky part because you've got your inner sense of what you feel is right and how you should be doing it. But every day you'll be met with this other. And that was really, really tricky. And it was only when we started to really pull back on that and start to say, Okay, well, why does it matter if we're late? What's gonna actually happen if we are late for school and little, little things like that, once you start saying that to yourself, changes things again, because what happens is when you've let those narratives and that advice in your anxiety does ramp up with that. And so being able to just say, Okay, well, we're not doing that anymore. Let's see what happens when we don't do that. And I always talk about one of the big changes for us was not eating dinner at the table. At the end of the school day, which had been demand laden, I had this fixation. I don't know whether it's having an Italian family, but that we had to sit at the dinner table, you know, we have to eat this square meal and sit at the dinner table. And I got really bogged down with that thinking we had to do that. And actually, once I removed that, and thought, why do we need to do that at the end of the school day, that's another demand. And took that away. It was again, another one of those moments where you think, Oh, my goodness, why are we doing?

Debbie Reber 14:08

Yes, in my book Differently Wired, the very first, I call them Tilts, but reframe is to question everything that you thought you knew about parenting. So I love that example. And you know, you have some other examples like that in the book. And that also made me think of Alfie Cohn's work with Unconditional Parenting. And we so often get on autopilot, and we prioritize things without questioning why they're important. So I just really appreciate that example. And that one change could make a huge difference for a child with PDA. You talked about school briefly, and you're in the UK. I have a lot of listeners in the UK, but a majority are in the US where PDA isn't fully recognized, although there is a growing awareness here, but I'm just wondering about the educational experience and having a child with the PDA profile. Is it possible for that child to have a school experience in a traditional setting? Can those two things ever be in alignment? Or is it kind of an uphill climb the whole way?

Eliza Fricker 15:11

I mean, you've got to think that in England, we're still harking back to the Victorian values offering. But it's very much in our education system. So within the mainstream system, I think the stats are pretty bleak. I think the PDA society talk about 70%, of PDA profile children and not in education, I think you'd have to look at our education system, and what it is and what it stands for and school uniforms, it's learning by rote, it's homework, there isn't much difference from one mainstream school to another. However, we do have different educational settings that you can access if you have the right paperwork, legal documents to support that. So we've been very fortunate that we now have an independent specialist setting, which does a much more kind of democratic way of learning. It's very strength based, it's holistic, there's lots of stuff. But in the mainstream, it's incredibly difficult. And I think that something that parents get quite upset with is the teachers not doing more. But you have to remember the teachers are as stuck in these systems, you know, many of them go into teaching for the right reasons, and find out that there is restricted in what they can bring to those children in those lessons as well.

Debbie Reber 16:43

Yes, 100%. It's tricky for everybody involved. And I'm just wondering, I'm sure there are teachers listening to this too, are there certain approaches or tweaks they could make with a child with PDA in the way that they teach them or support them or show up for them in the classroom that could make a difference?

Eliza Fricker 17:03

I think if they can offer as much flexibility within that system that they're in, if we're talking about the mainstream setting, often it's things like allowing for lots and lots of breaks within that day, allowing that child to come out of that classroom and do something else, all of the support that you will offer, a child with PDA will meet to be very, very subtle, they won't want to look any different from their peers. So there's no point sticking a laminated visual timetable in front of them and giving them timeout cards, they're probably going to rebuke rebuffed that. So you've got to work, it's going to be very much sort of person centered. So it's going to be someone that they really trust in that school coming in and offering them a job to do so that they don't look any different. They pop out with them or subtle thumbs up. And again, that creativity that we bring into how we do it at home is going to be the same in that setting. But that person is going to be absolutely essential, they're going to need that co-regulation from a person is not going to work with you know, I often joke about the the laminated worksheet, which is what we get given in our school system, you know, that's not going to work. It's got to be a person.

Debbie Reber 18:19

Yeah, I'd love to go back a little bit to the PDA profile. And I'm just wondering, because I know that you talk a lot about this, you're gonna, we'll share the link, but you're going to be actually doing a US tour to further understanding about PDA here in the US, which is great. How would you describe to someone who just pushes back and says Listen, all kids don't like demands placed on them, all kids with ADHD are demand avoidant, you know, a lot of autistic children are rigid and inflexible. Can you just talk a little bit about how you would describe, in your experience and in the work that you're doing, how this shows up differently?

Eliza Fricker 18:58

Well, I think a lot of the supports do work for other children. And actually, someone put a review recently from my book and said, I'm sharing this with friends with neurotypical children, and they're saying this is working for them. Because most of it is really kind of relationship based. That is the center of it. And it's connected parenting. And all children want that, you know, all children want to have time just really hanging out with someone who genuinely wants to be there and genuinely wants to spend time with them. The differences the PDA child is going to be much more astute at working out who's genuine, who's not. But all of it is very much about spending time working collaboratively. So you're not asking them to do something. It's much more shall we? I wonder if these are things that can work up across the board, because actually what you're doing is removing that hierarchy. And you're working as a team. And people are really shocked when I say we don't have any rules in our house. But we have a really, really well behaved child who wants to do things correctly, and we don't have that behavior. And we've got a teenager, but it's because we talk about things collaboratively with them. What time do you reckon you can get back tonight? Because they've started getting their teenager now, what time do you think it's good to? Rather than I want you back? There's nothing to push back again. That sort of thing?

Debbie Reber 20:37

Yeah, it really is. You have a section in here talking about chores, because as you're talking, I'm thinking, I know, I'm gonna have listeners who say, Okay, what do I do when I've got multiple kids, one PDA kid, and I take all demands off that child, but I want my other child to do X, Y, and Z. Do I let everyone off the hook? So I would love your answer to that. But I also would love you to speak to how you have addressed being helpful and being a contributing member of a family with chores. It sounds like it still happens. It just looks different.

Eliza Fricker 21:11

Yeah, I mean, I would say the chores don't really happen. Someone might correct me on this. I think that's more of a cultural thing. I think in America, that's more of a thing than here. I don't think we're so into getting kids to do chores, I would say, Harry Thompson always talks about the kind of, well, there's two things as the inspiration over instruction, and then the what's in it for me. And you have to think about that, you know, for a lot of children, who are neurodivergent? Why would they do that? What is in it for them, and actually, they will get there. I did a post the other day, they will get there when they get their children learn by osmosis. If you are kind as an adult, and they see you being kind and they see you being active, and they see you partaking in things. That's how they learn. They learn by seeing what you're doing, and they will become an adult, more than likely very similar to that. If you're barking orders at them. They are very likely to become another adult who barks or does it someone, but actually, children will get there. And you know, Henry Thompson talks about being a PDA adult, you know, he can drive a car, He cleaned his flat, you know, all these things people see when their children are struggling within the school system. And they think I don't think they'll ever get there. They'll never get to this amazing place of being adult who can thrive for themselves. But they do get there, but they get there through us being kind and showing encouragement, and on their own timeline. Yeah.

Debbie Reber 22:48

And on their own timeline, as you said, which is I mean, that's the case with all differently wired kids, right. They're on their own unique timeline, listeners. So Harry Thompson, who Eliza has mentioned a couple times he was on the show, and I'll have a link in the show notes page. He 's the author of the PDA Paradox: The Highs and Lows of My Life on a Little Known Part of the Autism Spectrum. He calls himself a PDA ambassador, right? Yeah, yeah, very knowledgeable. And that first person experience which is so helpful.

Debbie Reber 23:20

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Debbie Reber 24:11

I love the relationship based on this connective parenting and you know, in the way that you describe it, I often say that those of us raising neurodivergent kids, it is a more extreme form of parenting. And there are so many gifts that come with it. My kids started their senior year of high school today, as we're recording this and we're very close, like because of the relationship that we've had and I don't know what it'd be like to have a neurotypical kid so I can't say for sure, but I do appreciate the way that my child has demanded I show up for them has changed who I am and the way that I get to experience that relationship and that's something I'm really grateful for. So the gifts of PDA What else have you learned parenting a demand avoidant? child's sounds like you had to unpack some beliefs or ideas you had about the way to be a parent even though it sounds like from the beginning, you were very connected and co-sleeping, and we're doing that approach. But what else have you learned about maybe yourself and about what you think is a more respectful way to parent kids?

Eliza Fricker 25:18

Yeah, I think a lot has to come from us as the adult, I think we probably have to do the toughest lessons come from really looking into ourselves and, and looking back at things from our childhood, the way that we were parented. And I think sometimes we stick to those things. Because that's how we were raised. And it is okay to say, I'm gonna do it differently. Or just because that happened to me, doesn't mean I have to do it again. I mean, my dad jokes, he always says, You've got to fight the gene pool, always fight that gene. And I love you, you just question it all. And I think that that's something that's amazing. When you do parent differently, do you question it all? And you just say, But why, though? Why is that important? I've got a page in the book, pick your battles, which is an old saying that you can look back on that. And it became a bit of a joke in our family, when we had see sort of other families really, you know, barking orders at a child when we were out and about, and we were like, why is that important? You know, if they don't put their coat on, they're gonna get cold. But that's okay. You know. So it's all of that you really start to look at everything, and go back and question it and, and I've done a lot of stuff for myself to make sure that I am able to, to be there and be able to parent as best I can. And you know, for me, exercise has been a massive help for me. I'm very slim, but I do weightlifting. And I do boxing. And that just keeps me sane. So you find those things that really work for you. There is a lot of work to be done on ourselves on this journey. And I always say have lots and lots of fun, because I think we can get really bogged down in things and actually, just having a fun, nice time is not going to hurt anyone.

Debbie Reber 27:16

Absolutely. I love that you have a chapter about self care in the book and not in a like self care woowoo spa day way, but like how do you show up for yourself? And there is a big emphasis on fun and silliness and how that can just pivot everything. And you have a lot of good illustrated examples in here about how saying one thing, I think and one of them is like a pratfall, like just things that can completely change everything in that moment. So I really appreciate that. You mentioned other families. And I do just want to quickly ask you, if you have advice for listeners who feel misunderstood by whether it's their relatives, their own parents, of their parents in the community who just don't get it, like how have you deflected the the doubters or just kind of dealt with people who didn't get it or care to understand it?

Eliza Fricker 28:11

Yeah, I think particularly with PDA, because, as you mentioned earlier, it's something that because it's not in the DSM-5 manual, it's, some professionals particularly can be very well, they just won't entertain the idea of PDA. So you could say, My child is PDA and they will say, well, we don't believe in that or we don't, we don't see that we don't agree with that, or whatever. That can be really challenging. So often, I just talk about really simple things and don't even mention PDA, you know, if you've got in laws that are like, Oh, another label, you're putting another label on your child, just talk about the profile of PDA, say that your child has extreme anxiety. And that leads to avoiding demands, you can put all of that in place without mentioning PDA. A parent said to me, a friend said that they actually just emailed their family before Christmas, which isn't again, you know, tricky time, very demand lead and a lot of expectation. She said, I just emailed my parents and I said, just to let you know, he won't be eating at the dinner table. He's going to have a pizza. And actually, just by emailing her parents, they could hear that, you know, they had time to read it. Time to sit with it. Because often we feel so tense and we're so stressed and we're trying to explain all of this stuff about our child and then we feel rejected because people don't get it and so it's as well as making these accommodations for children. We sometimes have to do it with the people around us as well. Okay, well, how is it gonna work and I always took that bullet points. Because this is another thing often as parents, we write these long emails to people, you know, professionals, just a couple of bullet points because they're not going to read it. They've got like a gazillion other emails. How are you going to get that information over that is really, really important. So it's finding ways that you can communicate with people. And then just sifting out the ones that just don't get it if it's going to make your life really tricky, you know, politely tiptoe away from them. Because if it is going around to your friends, and you're feeling that way of expectation and demand, and it's just tricky for them, just skip it, you've got a great excuse not to go.

Debbie Reber 30:20

Yeah, absolutely. First of all, that's great advice. Because this is something again, I think applies to all parents, raising any sort of neurodivergent kid, especially around family expectations, holidays, and all that stuff. So I appreciate that reminder to just kind of say what you need and prioritize what you know, is best for your child and your family. Do you have any other advice for parents who are overwhelmed who are raising a child with PDA and are just feeling really stuck?

Eliza Fricker 30:47

Yeah, I think I think particularly when you are working with a school system, and you know, it would be, it's easy to say, we'll just skip the school system and do it your own way. But that's not always possible for families, you know, there's work commitments, not all of us can just be at home with our kids. But I would just say Just do as much of the kind of low demand approach that you can, when they're not in school. So after school at weekends, you know, don't plan a lot of stuff at the weekend, give them time just to chill out. I know, screen time is a big one, isn't it because parents feel like, should they be on the screens as much as they are. But you know, all of that giving them that break, to just chill out gives you that break to chill out as well. So just keep it low demand for all of you really pull back on all of that stuff. And I think if you see them start to see more regulated at home and karma, then it's going the right way. And I think most of these children work out, okay, once they have more autonomy in their lives anyway, you know, most ended up going to college when they can choose what they want to do. And they have that autonomy. So yeah, just go low demand for all of us have a bit of a nicer time.

Debbie Reber 32:09

That's great. Thank you so much for that. And also listeners read Eliza's book, The Family Experience of PDA because a way that you share the scenarios and the kinds of situations that parents are going to find themselves in and so simply show a different way of navigating that. I know that it must help so many parents feel seen. And that, as I know, from till parenting is just one of the most important things.

Eliza Fricker 32:35

Yeah, we've actually got the educators one coming out next. So that's going to be out next year. We don't have the date yet. So we've just finished it. It's just gone off to the publisher.

Debbie Reber 32:45

Oh, that's exciting. Yeah, that'd be really good.

Eliza Fricker 32:47

So I've co written that with Laura Kerbey co-written it. I say she did all the words this I just did the drawings. But that's going to be Yeah, the educators. Even though my book has been used by teachers, I think this is going to be really good for parents to give to those that are working with their children.

Debbie Reber 33:04

That is fantastic. Wow, that's wonderful. I saw that you have a book coming out in December of 2022. Can't Not Won't. Is that the book?

Eliza Fricker 33:13

Yeah, no. So Can't Not Won't is about that difficult bit of a child who cannot access school or is trying to access school. So that's much more of a sort of illustrations that are on Missing the Mark. And really to highlight the difficulties for a lot of our children to access an education. That's why it's called Can't Not Won't, because it's not that they don't want to, it's that they cannot. So hopefully that's going to add a little bit to the discussion already going on about attendance. I don't know if it's a big thing where you are, but it's a big issue here around the government's hardline on attendance.

Debbie Reber 33:57

Yeah, absolutely. Absolutely. That's great. I'm grateful that you're doing the work that you're doing. And listeners, I'll have links to all of these resources. And I'll update it as you have new books coming out. So definitely check out the show notes page for this episode. And then before we say goodbye, let listeners know where they can find you. And tell us a little bit about what your upcoming US tour is going to be about.

Eliza Fricker 34:21

Yeah, sure. So my website is missingthemark.blog. I also have Facebook and Twitter which are quite quite active on those. Facebook's good because I have a lot of other communities that I work with, and who I share things with doing on there. So work that I'm doing with Dr. Naomi Fisher, who wrote Changing Our Mind. I also do a lot of stuff with NEXT, which is Laura Kerbey's, who I've written the book with, and Harry Thompson. And there's details about the upcoming US tour which is in November where we'll be going to Florida, California soon Louis in New York. So that's where we'll be doing lots of PDA training. And as well as we'll be sort of doing presentations more and then consults for parents so they can come back in with us, and talk all things PDA, which is very exciting. So yeah, I think that's all of it, we can share the links for those.

Debbie Reber 35:19

That would be great. That's wonderful. Well, thank you so much. I'm so happy that we were able to connect. And I'm just always thrilled when I find people who are supporting other parents because of their own experience in bringing their talents to make this a just a better journey for all of us. So thank you so much. I just appreciate everything you share today.

Eliza Fricker 35:39

Thanks for having me.

Debbie Reber 35:42

You've been listening to the Tilt Parenting podcast. To go deeper into this episode, visit the extensive show notes page. For every episode, there's a dedicated page on my website with links to all the resources mentioned, a full transcript and a podcast player with key takeaways marked so you can easily go back and re listen to the sections you're most interested in. Just go to tiltparenting.com/podcast and select this episode. The Tilt Parenting podcast is hosted by me, Debbie Reber, author of the book Differently Wired and the founder of Tilt Parenting. This episode was edited by Andrea Curtis-Amezquita, and show notes were put together by myself, Andrea and Lindsay McFadden. If you get a lot out of this podcast and want to help cover the costs of its production, please consider joining my Patreon campaign. On Patreon you can sign up to make a small monthly contribution as little as $2 a month and it's super easy to sign up. Just go to patreon.com/tiltparenting To learn more, or click on the Patreon link on any show notes page. To follow Tilt Parenting on social media go to @tiltparenting on Instagram and Twitter and on Facebook. Lastly, please help this podcast stay visible and easily found by the listeners who need it by subscribing and leaving a rating or review on Apple podcasts or wherever you listen to podcasts. Thank you so much. And that's all for this week. Stay safe, stay well and take good care. And for more information about this podcast or any of the resources that Tilt offers, visit tiltparenting.com

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Episode 307: Eliza Fricker Talks About Parenting a Child with PDA

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Are you parenting a child with PDA? Illustrator and author Eliza Fricker shares insights from her book The Family Experience of PDA and more.

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5 things people get wrong about Pathological Demand Avoidance (PDA) *

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My Pathological demand avoidance and autism at age 10 Q&A PDA

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My Experience of Pathological Demand Avoidance (PDA)

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Kristy Forbes - Autism & Neurodiversity Support Specialist

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Kristy Forbes - Autism & Neurodiversity Specialist 

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Kristy Forbes - Autism & Neurodiversity Specialist 

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A light-hearted and digestible guide to being a PDA parent covering everything from tolerance levels, relationships and meltdowns to collaboration, flexibility, and self care to dip in and out as your schedule allows to help get to grips with this complex condition.

This book is an essential read for any parent with a PDA child, to help better understand your child, build support systems and carve out some essential self care time guilt free.

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The Family Experience of PDA: An Illustrated Guide to Pathological Demand Avoidance

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The Family Experience of PDA: An Illustrated Guide to Pathological Demand Avoidance eBook : Fricker, Eliza, Fricker, Eliza, Fidler, Ruth: Amazon.co.uk: Books

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I’m Not Upside Down, I’m Downside Up: Not a Boring Book About PDA

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Buy I’m Not Upside Down, I’m Downside Up: Not a Boring Book About PDA Illustrated by Jata-hall, Danielle, Thompson, Harry, Sherwin, Mollie (ISBN: 9781839971174) from Amazon’s Book Store. Everyday low prices and free delivery on eligible orders.

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The PDA Paradox: The Highs and Lows of My Life on a Little-Known Part of the Autism Spectrum

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The PDA Paradox: The Highs and Lows of My Life on a Little-Known Part of the Autism Spectrum eBook : Thompson, Harry, Evans, Felicity: Amazon.co.uk: Books

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The Teacher's Introduction to Pathological Demand Avoidance: Essential Strategies for the Classroom

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Buy The Teacher's Introduction to Pathological Demand Avoidance: Essential Strategies for the Classroom by Truman, Clare (ISBN: 9781787754874) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

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Brief content visible, double tap to read full content.

Full content visible, double tap to read brief content.

Communicating the little-understood PDA (pathological demand avoidance) neurotype in a visual way.

Sally Cat is an adult PDA author, illustrator, animator and public speaker. As a visual thinker and trained person-centred counsellor, she communicates the inner experience of the PDA neurotype via creative, graphic memes. Her Facebook page, Sally Cat's PDA page, has over 12,000 followers, including fellow adult PDAers, parents and professionals. Feedback across the board (from professionals to adults querying their neurology) has been that her memes have communicated what dense written documents cannot.

'Pathological Demand Avoidance Explained' is a collection of 75 of these memes adapted for e-book and paperback format.

'PDA by PDAers', published by JKP in 2018, is the first book about adult PDA. Illustrated throughout, the transcript takes the form of discussion carried out by over 70 adult PDAers. Sally chose this round table format to reflect the unconventional, non-hierarchical nature of the PDA neurotype.

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PDA by PDAers: From Anxiety to Avoidance and Masking to Meltdowns

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Buy PDA by PDAers: From Anxiety to Avoidance and Masking to Meltdowns Illustrated by Sally Cat (ISBN: 9781785925368) from Amazon’s Book Store. Everyday low prices and free delivery on eligible orders.

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Select Your Cookie Preferences

We use cookies and similar tools that are necessary to enable you to make purchases, to enhance your shopping experiences and to provide our services, as detailed in our Cookie Notice. We also use these cookies to understand how customers use our services (for example, by measuring site visits) so we can make improvements.

If you agree, we'll also use cookies to complement your shopping experience across the Amazon stores as described in our Cookie Notice. This includes using first- and third-party cookies, which store or access standard device information such as a unique identifier. Third parties use cookies for their purposes of displaying and measuring personalised ads, generating audience insights, and developing and improving products. Click 'Customise Cookies' to decline these cookies, make more detailed choices, or learn more. You can change your choices at any time by visiting Cookie Preferences, as described in the Cookie Notice. To learn more about how and for what purposes Amazon uses personal information (such as Amazon Store order history), please visit our Privacy Notice.

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Being Julia - A Personal Account of Living with Pathological Demand Avoidance

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Buy Being Julia - A Personal Account of Living with Pathological Demand Avoidance by Fidler, Ruth, Daunt, Julia (ISBN: 9781849056816) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

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Kristy Forbes - Autistic Support Specialist

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Natural Consequences and PDA (Pathological Demand Avoidance)

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What is Pathological Demand Avoidance (PDA)?

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PDA Society simple support strategies for a PDA profile of autism

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Education and support needs of children with PDA with Phil Christie and Ruth Fidler

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Demand Avoidance vs Pathological Demand Avoidance 

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Why Does My Child (PDA Autistic) No longer Follow Their Routine? (with Kristy Forbes)

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Kristy Forbes - Autistic Support Specialist

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Why Does My Child (PDA Autistic) No longer Follow Their Routine? (with Kristy Forbes)

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I've often come across parents saying their kids have rejected their PDA diagnoses; as well as parents of adult children who outright refuse to consider the idea of being PDA at all.

I believe it best to be cautious about disclosing PDA (or other diagnoses) to PDAers. I'm not saying that information should be totally withheld, but that I think it's important to bear in mind that we PDAers (both kids and adults) are likely to totally reject labels. This is a fundamental aspect of our PDA demand avoidance.

This is contrary to current autism best-practice wisdom, which states that children should be told of their diagnoses immediately because they will have already realised they are different to their peers, so concealing diagnoses withholds necessary information for helping them understand why they're different.

However, I don't believe this is generally best practice for PDA kids. Although PDA is classed as as an Autism Spectrum Condition, it's known that some autism strategies are ineffective, if not disastrous for PDA children. For example, adhering to familiar routines, and being explicit about what is required.

Similarly, adults suspected of being PDA are unlikely to accept being told of this. While few people (of any neurotype) would welcome being armchair-diagnosed by friends or family, I think we PDAers are especially resistant.

PDA is not "just autism"
The autism spectrum is an invention of the 2013 DSM-5, which has led many people to assume that everyone fitting the criteria for autism spectrum diagnosis is essentially the same; and that autism is all one, homogenous, indivisible thing, where one size fits all.

PDA misfits this stereotype. its classification as an ASC (Autism Spectrum Condition) does not mean that it is the same as "general autism". Despite matching the DSM-5's Autism Spectrum diagnostic criteria, PDA is neurologically unique. And it is this neurological uniqueness that, I believe, is of crucial importance when considering how to broach diagnosis to children. In other words, it's not all "just autism". Saying PDA is "just autism" because it's classed as an ASC, is like saying basketball is the same as football because they're both ballgames; or that the French language is the same as Italian because they're both Romance languages. So, yes, PDA -despite being classed as an Autism Spectrum Condition- does not flourish under all the strategies that work for general autism; and disclosure of diagnosis, I believe, is a case in point.

While PDA children (such as the younger me) will likely be aware of having some kind of big difference from our classmates, there's a strong likelihood our PDA avoidance will drive us to reject any labels we're given. Being told we are autistic/PDA/or anything else is an imposed label. We PDAers need to find things out for ourselves. This gives us the vital sense of ownership we need to accept ideas as or own, and free from the crushing demand of other people's opinions about who we are.

My personal experience
I gained my own PDA diagnosis recently because I found out about PDA for myself, then really wanted to be diagnosed. A major, ongoing battle followed for me to gain my PDA diagnosis, but I refused to give up when told it was impossible.

Conversely, my ten-year-old daughter, Milly, has had a PDA diagnosis for half her life, but I have intuitively not told her of it. While this flies in the face of current autism best practice wisdom that children should be told of their diagnoses immediately, I sensed that telling her she's officially labelled as qualitatively different from other children would distress her. Her PDA brain automatically resists being labelled. On top of this, she -like me- is a natural masker who doesn't want to be different from her peers. My intuitive response has been to talk to her about general neurodivergence traits when she's in the mood, using myself as an example, and giving her space to identify as and when she feels a connection to the things I talk about (e.g. masking; having difficulties knowing how to respond socially; and automatically wanting to avoid things). I am careful not to try to drive her to respond or connect. Additionally, I know not to tell her "you are X, Y, or Z" because I'm aware this would backfire, and she'd not only refuse to accept the label in question, but actively avoid it, meaning she'd lose any benefit of understanding of that aspect of her neurodivergent wiring. So my parental strategy for alerting my daughter to her PDA, and her broader neurodivergence, is to provide her with a 'pocket atlas' of neurodivergent conditions for her to refer to if she wishes, and put forward the attitude that difference is both normal and OK.

There is the sticky point that she's unaware of her formal diagnoses. I'm not easy that she's unaware of them. It troubles me a lot, to be honest. Had she initially been assessed for autism when older (she was three at the time of her assessment) my intuition might have been different; especially if she'd had major school or other issues she'd been aware of preceding her diagnosis.

What I urge parents to do is to tread very lightly when considering how to tell their PDA children of diagnoses. It might be that they'll 100% benefit from knowing about them, or it might be that their PDA brains will totally reject their diagnostic label/s and it would be more effective to drip feed them information about PDA, etc, when they're in the mood to take it in, and without explicitly telling them "this is how you are".

Adults who might be PDA
We PDAers tend to need to find things out for ourselves so we have a sense of ownership.

I've come across many comments from parents, and other close people, who strongly suspect an adult is PDA, but are frustrated that the person in question refuses to explore the idea. I totally get the frustration of the people who want these suspect PDAers to explore their potential PDA, but also understand that they're really not going to want to if they truly are PDAers. In a way, it's a kind of litmus test: those of us who most resist PDA label suggestions may most likely be PDA because the very nature of our neurology prohibits accepting other people's options about who we are.

What best to do? Well, I'm not a guru, but can give you my two cents. If you have an adult in your close family whom you suspect to be a PDAer who you wish to help (or, as is often the case, you wish to help yourself and other close family through their identifying as PDA), you'll likely get nowhere by trying to press them into identifying. In fact, your active hope that they'll identify as PDA will likely trigger their PDA avoidance to big time reject the idea for ever and then some.

What may be more effective is to quietly implement PDA strategies in your interactions with this person. There is a good summary of PDA strategies on this PDA Society webpage: https://www.pdasociety.org.uk/life-with-pda-menu/family-life-intro/helpful-approaches-children/

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When to tell a PDA child (young or old) of their diagnosis

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Blog about adult PDA (pathological demand avoidance), classed as an autism spectrum condition. It includes a Sally Cat's Guide To PDA meme library.

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Pathological Demand Avoidance (PDA) has become widely recognized worldwide as a profile on the autism spectrum. It describes individuals whose main characteristic it is to avoid everyday demands and expectations to an extreme extent that may be accompanied by high levels of anxiety. It is important to recognize and understand this distinct profile as it has implications for the way an individual can be best supported.
This webinar will provide an understanding of the PDA profile of autism and will cover the following topics:

Characteristics of individuals who fit the PDA profile

What life is like for a PDAer and their family

How PDA differs from typical ASD and ODD (Oppositional Defiant Disorder)

What supports and strategies are effective for this population

What is not effective to support this population

How to support a PDAer when they are in crisis

Why it is important to recognize this profile

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Melissa Sornik, LCSW - A Family Centered Practice

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Pathological Demand Avoidance (PDA) has become widely recognized worldwide as a profile on the autism spectrum. It describes individuals whose main characteristic it is to avoid everyday demands and expectations to an extreme extent that may be accompanied by high levels of anxiety.