Can I Tell You About Pathological Demand Avoidance Syndrome - a Guide for Friends, Family and Professionals

Understanding Pathological Demand Avoidance (pda) Syndrome

What Is Pathological Demand Avoidance?

PDA is a neurodevelopmental condition on the autism spectrum characterized by anxiety-driven demand avoidance and an intense need for control. The term “pathological” refers to the frequency and intensity—people with PDA avoid demands much more often than typical children, sometimes even when they want to do the activity. This is the defining distinction from typical Autism: while Autistic individuals may struggle with transitions or preferences, people with PDA experience genuine, severe anxiety around perceived demands themselves, regardless of task difficulty or desirability.

People with PDA share core autism spectrum traits including difficulties with social interaction, Social communication, and social imagination, but the defining feature is extreme demand avoidance combined with an intense need to be in control. Importantly, individuals with PDA are often more intellectually able and verbally articulate than those with typical autism, and may appear more socially aware on the surface. However, this apparent social competence masks significant struggles with understanding subtle social interactions and unwritten social rules. This presentation can lead to misdiagnosis or delayed Diagnosis, as the person may not fit the expected profile of autism.

No two people with PDA are identical—the condition manifests differently across individuals. The book demonstrates this through Issy and her friend Alfie, who both have PDA but show very different characteristics: Alfie doesn’t engage in pretend play, prefers bikes and Lego, and has more severe behavioral escalation (throwing chairs, swearing at teachers, running away). Both children share the same Diagnosis but require vastly different Accommodations and supports, highlighting the critical need for individualized assessment and intervention rather than applying a one-size-fits-all approach to PDA.

Core Features and Distinctions

Key distinguishing characteristics of PDA:

• Anxiety-driven demand avoidance: Not simply oppositional behavior but genuine Neurological distress around perceived demands
• Intensity of avoidance: Much higher frequency and intensity than typical children or even typical autism
• Verbal articulation: Often more verbally fluent than typical autism presentations
• Social awareness: May appear more socially competent on the surface while struggling with underlying social understanding
• Control needs: Intense need for autonomy and control over environment and choices
• Variability: Significant day-to-day differences in functioning and ability to manage demands

How PDA differs from typical autism:

• Typical autism often responds well to structured routines and predictability, while PDA often responds better to flexibility and choice
• People with PDA may appear socially fluent initially while having underlying social difficulties
• Demand avoidance in PDA is anxiety-driven rather than preference-based
• People with PDA often have better verbal abilities but struggle with the reciprocal nature of social interaction

The Experience of Demand Avoidance and Anxiety

Understanding the Anxiety Component

When faced with a demand (something someone else wants them to do), people with PDA become intensely anxious and employ various strategies to avoid compliance. This anxiety is genuine—not intentional rudeness, defiance, or unwillingness, but a Neurological response to perceived demands. Issy describes coming up with creative excuses like “I’m too busy,” “I’ve got tummy ache,” “my legs don’t work,” or “I just painted my nails so I don’t want to chip them.” These aren’t lies intended to deceive; they represent the person’s attempt to manage severe stress when facing something they perceive as a demand.

Crucially, avoidance occurs not just with genuinely unpleasant tasks (homework, tidying, personal hygiene) but sometimes even with activities the person desperately wants to do, like going to the cinema to see a new film or attending a party they’re looking forward to. When anxiety becomes intensely focused on not doing something, cooperation becomes neurologically nearly impossible—the anxiety itself prevents participation even when motivation and desire are present. Issy describes this experience as “struggling to walk down a stony path, even if there is something I want at the end of that path”—easy on good days with “comfy slippers” but agonizing on difficult days with “sore feet and no shoes.” Anxiety sensitivity varies day to day; some days someone with PDA can manage tasks relatively well, while other days they cannot cope at all, regardless of task difficulty.

The anxiety is not confined to external demands; people with PDA can also spend considerable time worrying about future problems, preventing them from enjoying what they’re doing in the present moment. This future-focused anxiety can be as disruptive as anxiety about immediate demands, creating a state of constant internal tension and hypervigilance about potential demands.

Physical Manifestations of Anxiety

People with PDA experience significant physical anxiety symptoms when facing perceived demands. These include:

• Faster heartbeat
• Sweating
• Tingling in arms and legs
• Inability to think straight
• Difficulty finding words
• An intense need to be in charge
• An aversion to people talking to or even looking at them

The body’s stress response is real and measurable, not something the person can simply overcome through willpower or reasoning. These physical manifestations highlight that demand avoidance is not a behavioral choice but a neurological response that the person cannot voluntarily control.

Physical Manifestations and Sensory Processing

Sensory Sensitivities in Pda

Many people with PDA experience heightened sensory sensitivities similar to those on the broader autism spectrum. Issy is sensitive to the stiffness of new clothes (especially new shoes), which require multiple washes before she can wear them, preferring clothes without lumpy buttons or scratchy zips. She dislikes showers because the water feels sharp on her skin and uses children’s toothpaste because regular minty toothpaste is too strong; she uses an electric toothbrush to reduce scratchiness in her mouth. Loud noises and strong smells significantly impact her ability to concentrate—school and shopping centers are particularly challenging, and airports are overwhelming unless she uses headphones.

These sensory issues are not preferences to overcome but genuine physiological differences requiring accommodation. They can make everyday routines like personal hygiene significantly more difficult and demand more creative problem-solving. Rather than viewing Sensory Accommodations as indulgence, they should be understood as necessary adaptations to Neurological differences, similar to providing glasses for someone with poor vision.

Practical Sensory Accommodations

Clothing and texture Accommodations:

• Wash new clothes multiple times before wearing to soften them
• Avoid clothes with lumpy buttons, scratchy zips, or stiff materials
• Allow choice in clothing based on comfort rather than appearance
• Recognize that texture sensitivity is genuine, not preference

Hygiene Accommodations:

• Use children’s toothpaste if regular varieties are too strong
• Consider electric toothbrushes to reduce oral sensitivity
• Allow bathing in evening rather than morning to reduce time pressure
• Adapt showering routines if water sensitivity is present

Environmental Accommodations:

• Use headphones or ear defenders in noisy environments
• Consider sunglasses or hats for bright lighting
• Allow breaks from overwhelming Sensory environments
• Plan shopping trips during quieter times when possible

Emotional Regulation and Meltdowns

Understanding Meltdowns

When anxiety escalates beyond what someone with PDA can manage, they may experience a “meltdown”—a state of complete overwhelm where emotions and regulation completely break down. Issy describes this as feeling like “a volcano of burning lava” where emotions spill out uncontrollably. During Meltdowns, individuals may display behaviors that look like those of much younger children: shouting, stamping, lying on the floor, and in some cases, breaking things or hitting people. Critically, the person having a meltdown is often terrified, even though they may appear angry to observers. The aggressive or destructive behavior is not intentional malice but a manifestation of overwhelming Neurological dysregulation.

Meltdowns can last for hours and are difficult to stop once started. People with PDA often have difficulty remembering what triggered a major meltdown afterward, suggesting that the triggering event may be separate from the escalation process itself. Important to note: some individuals with PDA, like Issy’s friend Alfie, may respond to extreme stress by running away, hiding, or becoming aggressive—behaviors that can be dangerous in public settings and require specific safety planning.

De-Escalation Strategies

Heavy pressure or physical touch (like a weighted blanket) can sometimes help during a meltdown by providing proprioceptive input that aids regulation. However, the priority during a meltdown should always be safety and de-escalation (backing off, giving space, avoiding emotional confrontation), not teaching lessons or enforcing consequences. Meltdowns are medical events—involuntary loss of regulation—not behavioral tantrums that can be controlled through discipline.

Effective meltdown response:

• Back off and give space
• Ensure environment is safe
• Avoid emotional confrontation or demands
• Consider heavy pressure if the person finds it calming
• Speak quietly and calmly
• Allow recovery without requiring immediate discussion
• Recognize Meltdowns as involuntary, not manipulative

Social Relationships and Communication

Friendship Challenges

While people with PDA typically want to have friends and desire social connection, they struggle with the reciprocal nature of friendship and understanding social nuance. Issy has a close friend at school (Emily) and a friend outside school (Alfie, who also has PDA). She notes that when she and Alfie disagree, they “get really stuck and really grumpy” and find it very hard to cooperate, often requiring one of them to go home. This difficulty with flexible perspective-taking and mutual compromise is a core challenge, even when both parties understand each other’s condition.

Issy recognizes that even though both she and Alfie have PDA, they are individuals with different traits and interests—Alfie doesn’t play pretend games and prefers bikes and Lego, while Issy loves imaginative play. This highlights the importance of seeing the person beyond their Diagnosis and recognizing individual personality, interests, and strengths.

Issy sometimes bosses her younger sister Alice too much, which limits how long they can play together. This pattern—needing to control interactions and finding cooperation difficult—is typical of PDA and reflects the underlying need for control and autonomy rather than a character flaw.

Communication and Praise Dynamics

Praise and recognition present a complicated dynamic. Issy wants people to notice her achievements but becomes stressed if praised directly in front of others, worrying that people will expect her to always be brilliant and knowing realistically that she cannot be. She prefers praise to be mentioned indirectly (adults telling others while she’s listening) rather than directed at her. This preference reflects anxiety about future expectations being placed on her—direct praise creates a sense of demand to maintain that level of performance.

Effective communication approaches:

• Use indirect acknowledgment rather than direct praise
• Mention achievements to others where the person can overhear
• Avoid public recognition that creates performance pressure
• Focus on private acknowledgment rather than public praise
• Recognize that praise may increase rather than decrease anxiety

Control, Autonomy, and Daily Living

The Core Need for Control

An absolutely central feature of PDA is the profound need to feel in control of one’s environment and choices. This need isn’t about being difficult or willful; it’s about managing anxiety. When people with PDA feel they have agency, choice, and control, anxiety decreases dramatically. Conversely, when they perceive they don’t have choice or are being coerced, anxiety escalates rapidly.

Issy creates contracts with her mother and sister for her greeting card business (“Issy’s Bizzy”), establishing that she is the boss and specifying job roles and pay. This business structure works because Issy maintains decision-making power and control. She participates far more readily and cooperatively when she feels she’s directing what happens. This extends to all areas of life—when she doesn’t feel in control of what she’s doing, compliance becomes much harder.

Understanding this need for control is transformative for Support strategies. The goal is not to eliminate the need (which is Neurological and permanent) but to accommodate it by building systems that preserve autonomy and choice while still addressing necessary tasks and routines.

Morning Routines and Daily Living

Issy’s family worked out several concrete strategies to make mornings less confrontational and anxiety-provoking. Her mother sets out clothes and packs the school bag the night before, leaving only snack choice for Issy to make. This approach reduces the number of decisions and demands while preserving some autonomy. Issy can choose where to have breakfast (kitchen, TV room, or bedroom) rather than having a fixed rule, accommodating her Sensory needs and anxiety on any given day. Her mother drives her to school even though it’s close, allowing her more time to get ready without time pressure. She bathes and brushes her teeth in the evening so that morning hygiene is less critical during the time-pressured morning routine.

These Accommodations work because they accomplish multiple goals simultaneously: they reduce demands, provide meaningful choices, recognize that on difficult days the person simply cannot manage everything, and maintain essential functions (hygiene, attendance) through creative problem-solving rather than confrontation. The goal is reducing conflict while maintaining necessary standards, not abandoning all expectations.

This represents a fundamental shift from typical parenting approaches: rather than trying to make the child comply with standard routines, the focus becomes creatively modifying routines and environments to reduce anxiety while maintaining essential outcomes. What matters is that the child gets to school clean and fed, not that it happens according to a particular schedule or in a particular way.

Educational Experiences and Support

School Challenges and Accommodations

People with PDA are often intellectually capable but may struggle to demonstrate this capability due to anxiety-related avoidance rather than inability. Issy is described as clever but finds it hard to do schoolwork on her “sore feet days” despite the work not being too difficult. She was struggling so severely with school attendance that she was missing school entirely on difficult days—the anxiety around the demand to attend school was preventing her from accessing education despite her intellectual ability.

Her school implemented “projects on pause”—a system where work she can’t manage on a given day goes into a folder to be completed later, reducing pressure and allowing her to choose from available projects. This accommodation works because it removes the demand quality (nothing is mandatory on any given day) while preserving the expectation that learning happens. Issy performs well when given choice (which project to work on, who to work with), and her teacher Mrs. Jones is described as her “best shield”—someone who understands her needs and helps her feel safe.

School Transition Considerations

Transitions to new schools can be particularly anxiety-inducing and often require specific preparation. Preparing someone with PDA by allowing them to visit the new school multiple times, get used to the uniform beforehand, and establish relationships with key staff members helps reduce anxiety and increase the likelihood of successful transition.

School systems based on rigid compliance and demand often fail individuals with PDA, while systems incorporating choice, flexibility, and understanding of the underlying anxiety are far more successful. Conventional approaches that work well for typical autism (structured schedules, clear rules, consistent consequences) may actually worsen outcomes for people with PDA by increasing the perceived demand quality of every interaction.

Alternative Educational Approaches

For some individuals with PDA, like Alfie, traditional school environments may not work even with Accommodations. Alfie moved to a special school with a curriculum built around his interests (Disney Pixar, Lego), which includes regular physical activity (trampoline, cycling machine) and flexible demands. This individualized approach allowed him to access education where conventional approaches had failed.

Support Strategies and Relationships

The Concept of “shields”

People with PDA benefit enormously from having “shields”—trusted adults who make them feel safe, understand their condition, and help protect them from overwhelming demands. Issy describes shields as people who “let me just be myself” and are present whether things are going well or badly. A strong shield at school (like Mrs. Jones) or at home (like her parents) significantly improves functioning, wellbeing, and ability to manage stress.

Shields serve multiple functions:

• They advocate for the person’s needs
• They help interpret the person’s behavior charitably to others
• They provide unconditional acceptance
• They buffer demands from other adults
• They create psychological safety

The presence of a shield often allows someone with PDA to function at a higher level, participate in activities they might otherwise avoid, and experience less overall anxiety.

Ideally, someone with PDA would have shields in every environment (home, school, shops, parties), which is why understanding PDA across all the adults in their life is so important. Without shields in a particular environment, the person may be significantly more avoidant, anxious, or prone to Meltdowns. As people with PDA mature, they gradually need to develop their own internal resources for managing stress, but relying on external shields is crucial during childhood and adolescence, and many adults with PDA continue to benefit from supportive relationships throughout life.

Individual Variation and Support Planning

As emphasized throughout the book, no two people with PDA are identical, even when they share the same Diagnosis. Alfie’s presentation differs significantly from Issy’s despite both having PDA. Alfie doesn’t engage in pretend play, prefers bikes and Lego over imaginative games, and has more severe behavioral escalation (throwing chairs, swearing at teachers, running away). His family moved him to a special school with a curriculum built around his interests (Disney Pixar, Lego), which includes regular physical activity (trampoline, cycling machine) and flexible demands. Both children have the same Diagnosis but require very different Accommodations, Support strategies, and environments.

This variation highlights the necessity of individualized assessment and Support planning rather than applying generic “PDA strategies” to every person with the profile. What works brilliantly for one person with PDA may not work for another. Understanding the person’s specific anxiety triggers, interests, Sensory profile, and communication style is essential.

Practical Strategies and Approaches

Communication Strategies

Indirect Communication and Offering Choices

Rather than direct instructions that activate demand avoidance, offering choices or making indirect suggestions significantly increases cooperation and reduces anxiety. For example, instead of “put your shoes on,” try “would you like to put your shoes on sitting on the stairs or the chair?” or “surprise me with which shoes you pick.” This subtle shift preserves the person’s sense of control and autonomy while still moving toward the necessary outcome.

How to apply:

• Rephrase directives as choices (“Would you prefer X or Y?” rather than “Do X”)
• Offer indirect suggestions (“Some people find it helps to…” rather than “You need to…”)
• Avoid direct Eye contact or confrontational Body language when making requests
• Use collaborative language (“Shall we…?” rather than “You must…”)
• Build in genuine options whenever possible, even if the options are limited
• Recognize that perceived demands create anxiety regardless of how they’re phrased—the goal is to reduce the demand quality of interactions

Environmental and Demand Management

Reducing Overall Demand Load

Beyond individual interactions, the overall demand load in someone’s environment significantly impacts their functioning. This involves strategically deprioritizing non-essential tasks, being willing to postpone non-urgent issues, and adjusting expectations based on the person’s current tolerance level. Unlike typical autism where structure and consistency are generally helpful, people with PDA respond better to flexible approaches that reduce total demand and preserve autonomy.

How to apply:

• Identify which tasks are truly essential versus which are nice-to-have
• Develop “projects on pause” systems where non-urgent work can be deferred without penalty
• Allow flexibility in how and when tasks are accomplished rather than rigid scheduling
• Accept that on difficult days, the person may manage only core functions (hygiene, nutrition, attendance)
• Build in regular breaks and low-demand periods where the person can decompress
• Communicate that some things don’t need to happen today and can happen another time
• Avoid multiple sequential demands; space demands out and provide recovery time between them

Autonomy and Control Strategies

Strategic Use of Autonomy and Control

A core feature of PDA is the intense need to feel in control. Strategies that incorporate genuine choice, allow the person to direct how tasks happen, or present tasks as collaborative rather than imposed will be far more successful than compliance-based approaches. This need for control isn’t a personality flaw—it’s a core Neurological feature that must be accommodated.

How to apply:

• Create structures where the person is genuinely in charge of certain domains (like Issy’s greeting card business)
• Frame activities as collaborative (“Let’s work together on this…” rather than “I need you to…”)
• Provide agency over process (“You decide how you want to…” rather than “This is how you’ll do it”)
• Develop contracts or agreements where the person has input into the terms
• Allow the person to make decisions about their own routines and Accommodations
• Recognize that perceived loss of control escalates anxiety dramatically—preserve autonomy wherever possible

Critical Considerations and Warnings

Safety Planning for Dangerous Behavior

While Meltdowns are involuntary and medical events rather than behavioral tantrums, they can still involve dangerous behaviors: running away, breaking things, hitting, or aggressive escalation. This is particularly notable in individuals like Alfie who may respond to extreme stress by running away or becoming aggressive in public settings. Safety planning and potentially professional intervention are necessary when Meltdowns involve dangerous behavior.

Professional Assessment Requirements

While this guide provides valuable understanding of PDA, it is not a substitute for professional Diagnostic Assessment. PDA is often misdiagnosed or missed entirely because the presentation can superficially resemble defiance, behavioral problems, or typical autism. Proper Diagnosis requires Assessment by professionals trained in recognizing PDA-specific presentations. Self-Diagnosis or Diagnosis based solely on this book may lead to misunderstanding and ineffective Support strategies.

Essential Vs. Non-Essential Demands

While accommodating PDA involves reducing demands and increasing choice, some demands (certain safety procedures, medical care, basic hygiene) may be essential and non-negotiable. The goal is not to eliminate all demands but to strategically reduce them while accommodating autonomy wherever possible. Support from professionals experienced with PDA may be necessary to navigate which demands are truly essential and how to present them in ways that minimize anxiety.

Cultural Context Considerations

The strategies and examples in this book are written from a UK perspective and may not directly translate to all cultural contexts. Different cultures have different expectations around child independence, family decision-making structures, and educational approaches. While the core principle (reducing anxiety-driven demands and increasing autonomy) likely applies across contexts, the specific implementation may need to be adapted based on cultural values and expectations.

Resources and Support

Organizations and Support Services

PDA Society (<www.pdasociety.org.uk>) – UK-based, open to international members; provides information, resources, Support services, and training. The primary organization for PDA awareness and Support

National Autistic Society (<www.autism.org.uk>) – UK’s leading autism charity with information, services, and resources

NORSACA (<www.norsaca.org.uk>) – East Midlands charity including the Elizabeth Newson Centre, which has expertise in PDA

Autism Education Trust (<www.autismeducationtrust.org.uk>) – Professional development and training for educators and professionals working with Autistic individuals

Autism Society (<www.autism-society.org>) – USA-based national organization providing resources, Support, and advocacy

Autism Society Canada – Canadian resources and Support

Autism Spectrum Australia (Aspect) – Australian resources and Support

Autism New Zealand – New Zealand resources and Support

Autism Europe – International network and resources

Additional Resources

• PDA Resource - Comprehensive information and Support
• National Autistic Society - UK autism resources and Support
• Understood - Learning differences and Neurodiversity resources

Related Publications

• Understanding Pathological demand avoidance Syndrome in Children by Christie, Duncan, Fidler, and Healy (2012) – Academic resource on PDA understanding and recognition
• Pathological demand avoidance Syndrome – My Daughter is Not Naughty by Jane Alison Sherwin – Parent perspective and practical strategies
• The Explosive Child by Ross W. Greene (2005) – Evidence-based approach to managing explosive behavior in children, applicable to PDA contexts
• The Incredible 5-Point Scale by Buron & Curtis (2003) – Tool for helping children understand and rate their emotions and behaviors on a scale
• A Volcano in My Tummy by Whitehouse & Pudney (1996) – Children’s book about anger and emotion management, referenced in the context of Meltdowns
• Managing Meltdowns by Lipsky & Richards (2009) – Strategies for understanding and managing meltdown behavior