Understanding Pervasive Drive for Autonomy (PDA): Key Insights, Identification, and Support Strategies

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Acknowledgement: I would like to acknowledge Marisa Georgiou of Full Saturation for their contribution - informing the writing of this blog post via sharing their insights and experiences in conversation to support the articulation of my inner PDA experience and the challenges that come along with it.

Introduction

Research has indicated that about 30% of Autistic individuals exhibit significant demand avoidant behaviours that align with the characteristics of PDA (O'Nions et al., 2014). PDA has been contentious in the Autistic community, with those who align with a neurodivergent affirming lens adopting Pervasive Drive for Autonomy over Pathological Demand Avoidance. Some argue that PDA is not a valid Autism profile and may undermine the experiences of Autistic individuals while others believe that PDA provides recognition and understanding for those who do not fit into traditional Autism profiles. This blog post aims to bring some clarity about PDA drawing from research and lived experience.

What are demands?

Daily life can present various demands, encompassing both direct and indirect pressures. Direct demands include explicit requests or questions from others or situations that need immediate attention. Indirect demands, on the other hand, often stem from internal pressures and expectations we place on ourselves, or subtle cues and societal norms we feel compelled to follow. These can manifest in numerous ways, such as feeling the need to be constantly productive, balancing work and personal life, or meeting social obligations.

According to the PDA Society (2024) demands can include:

• Time: Time pressure can add stress on top of initial demands.

• Plans: Planning ahead might cause anxiety as the date approaches, while spontaneous activities can be challenging due to intolerance of uncertainty.

• Questions: The expectation to respond can feel overwhelming.

• Decisions: The need to make decisions can lead to 'decision paralysis' when faced with too many choices.

• Internal bodily demands: Simple needs like thirst or needing the bathroom can feel demanding.

• Thoughts/desires: Internal feelings and wishes.

• Uncertainty: It's essential for PDA individuals to know and feel they have a handle on situations.

• Praise: It can imply a need for repetition or improvement next time, which may not be motivating.

• Transitions: Moving between activities and dealing with the uncertainty of what’s next.

• Expectations: Both external expectations and self imposed ones.

• Sensory overload and sensory integration difficulties: Managing sensory input can be challenging.

• Other people’s energy and presence: Interactions can be demanding.

• Desirable activities: Even hobbies, seeing friends, or special occasions can feel like a demand, not just unwanted tasks like housework or homework.

There are also layers of demands—smaller tasks embedded within larger ones. For example, to 'get dressed' (the big demand) could involve several smaller demands: considering the weather, the occasion or personal preferences, finding clean clothes, choosing what to wear, putting on clothes in the right order and dealing with irritating labels. Each of these smaller tasks requires its own set of decisions and actions.

What is PDA?

First identified by Elizabeth Newson in the 1980s, PDA has gained more recognition over the years, particularly in the UK, though it remains under-researched compared to other Autism profiles (Fidler, Christie, & Kirk, 2021). PDA refers to a set of behaviours typically displayed by Autistic individuals who have an intense need for control, a strong desire for sameness and extreme avoidance of everyday demands (Christie et al., 2011, O'Nions et al., 2014). These behaviours are not just reactions but are integral to their Neurodivergent experience. It’s essential to understand and respect these needs rather than viewing them as problematic (Newson et al., 2019). Autistic individuals may struggle with managing sensory input, cognitive processing and emotional regulation which can lead to intense feelings of overwhelm and a need for control. These behaviours can often be mistaken for oppositional defiance or manipulation, but they are actually rooted in extreme anxiety and fear. PDAers prefer self-imposed routines over externally imposed ones and often create their own structured way of doing things to maintain control.

PDA is a spectrum that varies among individuals (PDA Society, 2024). Some may show externalised, active presentations with overt or controlling avoidance behaviours. Others may have internalised, passive presentations, quietly resisting demands and masking their anxiety. Many individuals exhibit variable presentations influenced by factors such as their current state, environment, and age. The extent of avoidance depends on their capacity for demands, anxiety levels, overall health, and surroundings. PDAers can appear to be very social, outgoing and charming, making it difficult to recognise their underlying struggles. However, these individuals face significant challenges in daily life due to their need for autonomy and avoidance of demands. This can lead to difficulties in various areas such as education, employment, and relationships.

Avoidance behaviours can range from refusal and withdrawal to shutdowns or escape, often starting with subtle social strategies (akin to fawning), however, escalation can happen quickly if pressure is applied (PDA Society, 2024). Initial avoidance might include distraction (changing the subject, engaging in interesting conversation), procrastination, excuses (explaining why it is not possible to do) or reducing engagement in interactions. If these initial strategies don't work rapid escalation can occur. This is not a conscious decision but an instinctive nervous system flight/fight/freeze reaction.

Stuart et al.'s (2020) study indicated that intolerance of uncertainty and anxiety significantly contribute to extreme demand avoidance behaviours in children and adolescents with PDA. Further insights included:

• Intolerance of Uncertainty: PDA individuals often have a heightened intolerance of uncertainty, leading to significant anxiety in ambiguous situations. This compels them to engage in extreme avoidance behaviours to regain feeling of control and alleviate anxiety.

• Anxiety: Anxiety is prevalent in PDA and closely linked to intolerance of uncertainty. It drives demand avoidance behaviours as a coping mechanism to enhance predictability and reduce anxiety.

• Behavioral Strategies: PDA individuals use various strategies to manage intolerance of uncertainty and anxiety, such as controlling the situation, withdrawal to fantasy, and meltdowns, to cope with uncertainty.

Furthermore understanding the concepts of intolerance of uncertainty and anxiety can significantly enhance our comprehension of PDA and inform interventions for individuals with this Autism profile (Stuart et al., 2020). Here are some ways in which this understanding can be beneficial:

• Early Identification and Diagnosis: Understanding the relationship between intolerance for uncertainty, anxiety, and PDA can aid in the early identification of PDA in children and adolescents. Allied health providers, health professionals and caregivers can look for signs of intolerance of uncertainty and anxiety as potential indicators of PDA, leading to more accurate assessments and timely interventions.

• Improved Support Strategies: By recognising the role of intolerance for uncertainty and anxiety in driving demand avoidance behaviours in individuals with PDA, support strategies can be tailored to target these specific underlying mechanisms. Strategies aimed at increasing tolerance of uncertainty and managing anxiety can be incorporated into support plans to address the core difficulties experienced by individuals with PDA.

Accurate understanding and acknowledgement of PDA is crucial. Misinterpretations can lead to approaches that fail to respect the individual’s needs and may exacerbate their anxiety and need for autonomy (O’Nions et al., 2020).

Strategies for Supporting Individuals with PDA

A flexible and individualised approach to assessment and support for individuals presenting with a PDA profile is essential (Doyle & Kenny, 2023). Therapists and educators should be trained in strategies that respect the autonomy and unique needs of individuals with PDA, grounded in a neurodivergent affirming approach (Gillberg et al., 2018).

Supporting individuals with PDA involves (PDA Society, 2024):

• Understanding and Respect: Recognise that avoidance behaviours are often rooted in a need for autonomy and a desire to maintain control over one's environment. By addressing the underlying needs and providing a compassionate response, individuals can feel more understood and valued.

• Indirect Language and Suggestions: Instead of direct demands, use suggestions and invitations to foster a more collaborative atmosphere. For example, "I wonder if you’d like to try…" can be more effective than "Do this now." This approach can make the other person feel more respected and valued, encouraging them to engage more willingly and positively. By phrasing requests as invitations, you create opportunities for open dialogue and mutual understanding.

• Offering Choices: Providing choices helps individuals feel a sense of control and autonomy over their actions. For example, when you ask, "Would you like to do homework now or after lunch?" it allows them to make a decision based on their preference and schedule. This simple act of offering options can lead to increased motivation and cooperation, as they feel more involved in the process.

• Building Trust: Developing a collaborative relationship where the individual feels safe and understood is essential for fostering trust and open communication. This environment encourages individuals to express their ideas and concerns freely, ultimately leading to more successful outcomes.

• Flexible Routines: Implementing routines that are flexible and allow the individual to have input can significantly reduce anxiety and resistance. By offering a sense of control and adaptability, these routines help individuals feel more comfortable and engaged. This approach fosters a supportive environment where people can thrive and manage their tasks with greater ease.

• Address Sensory Issues: Individuals with PDA may experience sensory processing differences that can exacerbate their anxiety and avoidance behaviours. By addressing these sensory needs through modifications in the environment, individuals can feel more comfortable and better able to engage in tasks.

My Lived Experience and Conceptualisation of PDA

There is a narrative around PDA that it should be "accepted" in alignment with the broader neurodiversity movement. While I agree with this sentiment, I believe it's important to understand one's PDA triggers and ways to regulate the nervous system. This understanding can significantly enhance wellbeing, rather than feeling trapped within the confines of PDA, decreasing distress and reducing the impact on every aspect of life. In the short term, avoiding discomfort might seem beneficial, but in the long term, this strategy makes life increasingly difficult to navigate. From my own experience as a PDAer, it's about changing how you "feel" rather than altering what you "think". It's important to consider whether PDA truly supports autonomy because, ironically, PDA can be the biggest demand of all.

I believe PDA is intrinsically linked with trauma, the nervous system, and the vagus nerve -particularly the fawn response and social engagement system within the context of Autistic masking. PDA also serves as an extreme avoidant coping mechanism. Environmental and interpersonal accommodations can certainly be implemented, but it's also crucial for individuals with PDA to build their own strategies to handle situations that trigger their nervous system. It comes down to nervous system regulation and feeling empowered rather than feeling controlled—with the PDAer experiencing control from a place of empowerment rather than disempowerment.

Nervous system activation is a major aspect of PDA - linking it closely with trauma - and not necessarily significant traumatic events, but rather the accumulation of daily Autistic trauma from growing up being forced to do things that felt uncomfortable due to sensory, social, communication, executive functioning and cognitive differences. Growing up Autistic you are often taught to please others and relinquish your own boundaries and bodily autonomy. The push to perform neurotypical behaviours often results in negating one’s own limits and authentic ways of being - as we are told our needs are not valid and that meeting the needs of the majority is more important. The masking requirements the mental anguish of forcing oneself to do things that feel unnatural can be traumatising so when you become an adult the thought of having to do that becomes unbearable and debilitating.

As a multi-exceptional person (Gifted, Autistic, ADHD), I have found further factors that contribute to PDA including internalised ableism, avoiding admission of fluctuating capabilities and avoiding the risk of exploitation from others. Due to my giftedness, I often face higher expectations from myself and others and the internal pressure to complete tasks can already be overwhelming but when combined with external pressures, it can be too much to handle and panic sets in. Then when others see how capable you are they wish to tap into that resource, often leading to the exploitation of your gifts and abilities, resulting in feeling the need to defend against that exploitation. This is the trauma of being compelled to perform beyond one's capacity. Due to my "precedent of capability" I feel shame (so I mask my struggles from others) and guilt (so I don't ask for help and struggle to say no). This constant struggle results in relentless burnout from trying to meet unrealistic standards based on "good days" while also grappling with "bad days". It is important to remember that Autism is a dynamic disability with no "good" or "bad", rather often an individual striving for societal and social acceptance via productivity and people pleasing without being able to maintain it.

I felt that it was important to convey an authentic representation of my PDA experience however I feel it's also important to mention that I have done a lot of work trying to understand this aspect of myself, sought professional support and have my own strategies and accommodations in place. I have come to accept that PDA is a part of who I am and a reminder of the obstacles that I have overcome and hard lessons I have learnt in life. There are some protective and adaptive functions to PDA when it's in balance with other aspects of the self. It has been a navigator in where my true boundaries lie and now I have the ability to be able to articulate my boundaries with confidence and without guilt or shame.

Conclusion

PDA requires specialised and respectful support strategies. By understanding the characteristics of PDA and implementing tailored approaches, caregivers, educators, and professionals can better support individuals with PDA, helping them navigate their daily lives with reduced anxiety and increased autonomy. Recognising and respecting the needs of those with PDA is essential for fostering an environment where they can thrive. Engaging with the experiences and insights of those directly affected by PDA can deepen our understanding and improve support strategies.

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References

Doyle, A., & Kenny, N. (2023). Mapping experiences of pathological demand avoidance in Ireland. Journal of Research in Special Educational Needs, 23(1), 52–61. https://doi.org/10.1111/1471-3802.12579

Fidler, R., Christie, P., & Kirk, C. (2021). Pathological demand avoidance: Current understanding and support. Autism, 25(2), 318-329.

Gillberg, C., Pickles, A., & Madden, S. (2018). PDA and the Autism Spectrum: An Update. Journal of Child Psychology and Psychiatry, 59(5), 541-555.

Gore, N., Hastings, R. P., & Brady, S. (2020). Experiences of Receiving a PDA Diagnosis. Journal of Autism and Developmental Disorders, 50(8), 2951-2962.

Myers, C., Davis, R., & Baker, J. (2022). Parent Perspectives on Supporting Children with PDA. Autism in Practice, 4(3), 156-167.

Newson, E., Le Maréchal, K., & David, C. (2019). Demand Avoidance in Autism: Historical Perspectives and Modern Understanding. Developmental Disorders Journal, 11(1), 45-60.

O’Nions, E., Happé, F., & Viding, E. (2020). Distinct profiles of PDA within autism spectrum disorders. Clinical Child Psychology and Psychiatry, 25(1), 87-99.

PDA Society (2024). https://www.pdasociety.org.uk/

Stuart, L., Grahame, V., Honey, E., & Freeston, M. (2020). Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents. Child and Adolescent Mental Health, 25(2), 59–67. https://doi.org/10.1111/camh.12336