Understanding Pathological Demand Avoidance

Pathological Demand Avoidance (PDA) is a particular profile characterising a small minority of children on the autistic spectrum. Children with PDA are driven to extreme measures to avoid everyday demands and expectations[1]. A demand is implied whenever someone is made or expected to do something, and when requests, reminders and prompts are used in a way which suggests that a particular behaviour, action or response is required. For example, demands might include answering their name in class, transitioning between activities, or even performing basic self-care tasks such as washing, dressing, and sleeping. Importantly, it is the demand and not the actual content of the demand that is difficult for these children. A child may love an activity, and want to do it, but if there is too much expectation to do it, or if the child is reminded or prompted to get ready to do it, they will suddenly not be able to.

Demands, and the expectations and reduced feelings of control that accompany them, cause PDA children extreme anxiety[2], and they will often resort to highly oppositional behaviour. This is not by choice, but is a neurological response that cannot be avoided and is better understood as a form of panic[3]. Some PDA children can be very good at masking the difficulties they experience with demands, and will find passive ways to avoid demands without confrontation[4]. Many PDA children find the demands of complying in school and ECE settings overwhelming, and they experience exclusion or have difficulty attending regularly or completely[5].

PDA is a lifelong disability[6] that affects girls and boys equally[7]. It is dimensional, which means that it will affect individuals in varying ways[8], and interact with other developmental factors, conditions, and personal situations[9]. Although it is relatively uncommon, PDA is very distinct from other autistic profiles, and children with PDA require unique support in ECE and school unlike that usually provided for autistic children[10].

What are the specific characteristics of PDA?

Like other autistic individuals, those with PDA hold the same constellation of characteristics that make up the autistic spectrum, including specific strengths (such as an eye for detail or talent for logic or memorisation), and distinct patterns of social interaction and communication, thinking, experience of emotions, and over- or under-sensitivity of particular senses[11]. However, PDA children often have better social understanding, which can make their autism less obvious[12]. PDA can also be a hidden disability, with children using their greater social understanding to seem ‘normal’ to others[13]. This is known as ‘masking’ or ‘fawning’, and it can be extremely exhausting for a child to maintain.

Some people are uncomfortable with the use of the term ‘pathological’ in the name of the condition. They argue that, when the difficulties that autistic people have trying to navigate through a neurotypical world (and schooling system) are recognised, the demand avoidance strategies shown by PDA children could be viewed as completely reasonable and rational[14], and as a positive expression of agency and self-advocacy[15]. It is important to be aware that describing autistic children’s demand resistance as pathological is based in adult-centric, developmental and neurotypical assumptions held about how children should behave and may not be very respectful of PDA individuals.

While there are a group of behavioural features that define PDA, every PDA child will have a unique presentation, so treating and getting to know each PDA child as an individual is extremely important. It is also possible that a PDA child may have other co-occurring conditions. The main features of PDA are:

• An extreme resistance or avoidance of everyday, ordinary demands[16]. Children employ a wide range of strategies to avoid demands and expectations due to the high levels of anxiety they cause. Strategies include refusal, physical incapacitation (such as going limp, dissolving into tears, or hiding), distraction, making excuses, delaying, withdrawing into fantasy, making silly noises, engaging in outrageous behaviours, mimicking, or selective mutism[17]). Many will become verbally or physically aggressive to avoid a demand, which should be interpreted as a panic attack[18]. Some children will avoid activities they perceive as fun, or even activities they think of themselves (self-imposed demands)[19]. It is even possible for a PDA child to experience hunger as a demand and so be unable to eat[20]. Tolerance for demands can vary from day to day and moment to moment, depending on the level of anxiety the PDA child is experiencing. If anxiety levels are high, demand tolerance will be low[21].
• Appearing sociable but without a depth of understanding[22]. Children’s social interactions may be affected by their desire to be in control of the situation, and their inability to respect hierarchies (for example, many PDA children see themselves as having adult status)[23]. Some children can be socially manipulative in a bid for the control that will reduce their anxiety[24]. Other children can have problems understanding sarcasm, teasing or literality[25].
• Poor emotional regulation[26]. PDA children can experience dramatic mood swings[27], often in response to a need to be in charge[28]. They can switch quickly (and often desperately) from gentle cajoling to angry outbursts. They can also be loud, excitable, and impulsive[29].  

PDA children are often highly motivated by role play, and can easily take on the roles and styles of others. They may have obsessions, usually focused on other people. They can also be clumsy and physically awkward[30].

In school, PDA can lead to a variety of problems. Often, anxiety about the demands involved in all aspects of school attendance can lead to children becoming school phobic and refusing to attend school, or their violent outbursts can result in exclusion from school[31]. They are likely to show resistance to learning as it involves a lack of control over outcomes and the possibility of failure[32]. This means they often function below their level of potential[33]. In addition, PDA children:

• Have difficulty accepting suggestions, guidance and direct instruction[34]
• May lack friends and be unpopular with their peers[35] due to their policing of others, and need for dominance[36]
• May be acutely anxious and fearful of a range of people, activities and environments (for example, they may not be able to go outside)[37]. They can also be emotionally exhausted from constantly being on watch for the next demand[38].
• Have difficulties with attention when demands are being made of them (yet will display highly focused attention for self-chosen activities and interests)[39], and have difficulties with transferring learning and experience[40]
• Have poor self-esteem which means they often believe they cannot do something, lack confidence to try[41], or destroy their own work because they believe it to be poor quality[42]. PDA children often feel a need to be on par with or better than others, although they are unable to put in the work needed to achieve this[43]. They may show an inability to accept responsibility for mistakes, instead blaming others or creating elaborate excuses[44].
• May become the class scapegoat or class clown[45]

Some children may appear to be compliant and well-behaved, but this is a role that they play in order to be left alone[46]. These children will often behave much worse at home, after having reached their tolerance limits while at school[47]. 

Strategies for supporting PDA children in an educational setting

PDA children are especially fragile and vulnerable[48]. Pushing a PDA child to meet demands is likely to lead to ‘meltdown’ behaviour and panic attacks, over which the child has no control[49], and which contribute to low self-esteem and feelings of guilt and shame. They require lots of reassurance and understanding[50], and significant support to self-regulate, which is best met in the context of secure, empathetic, and sensitive relationships with carers. Teachers need to be able to offer PDA children regular signals of safety to prevent their nervous systems going into fight, flight, or freeze mode. They can do this by offering a sense of understanding, collaboration, and unitedness with their tone, facial expressions and gestures, and by being physically close. It is important to present a willingness to share demands with children and to scaffold their involvement in class activities. Teachers need to create educational environments in which children feel comfortable enough to tolerate the demands of attendance[51].

ECE settings, schools and teachers will need to have a genuine commitment to inclusion, and be creative, flexible, adaptable, and positive[52]. All strategies should be highly individualised, but the following list provides some areas to consider.

• The quality of the relationship with the child[53]. Relationships based on reciprocity and partnership, in which people do not make demands, or give commands or directives, are most successful for PDA children[54]. It can be helpful initially to allocate a specific keyworker or teacher who develops an intimate knowledge of the child and will be able to ascertain when to pursue an objective and when to reduce demands (it is best to begin with as few demands as possible[55]). This relationship will also support the child to build up trust in other adults in the setting or school.
• A more negotiative, indirect style of approach[56]. Less directive and more intuitive language that creates a sense of partnership is preferable[57]. For example, ‘I wonder how we might…’, ‘I can’t quite work out how to…’[58], or ‘How do you feel about…?’[59] are better than phrases that include demand words such as ‘need’, ‘must’, or ‘will’ [60]. Time deadlines are also highly stressful for PDA children[61]. Inappropriate behaviour should be handled indirectly without confrontation[62], for example, by offering lots of reassurance and understanding, before engaging in shared problem solving about replacement behaviours (‘we need to think of another way to…’).
• Fewer ground rules and lower expectations[63]. Carefully determining priorities is helpful so that many demands can be avoided[64]. It can be important to explain to children that sometimes there may be important reasons for making a demand, but that at the same time you will try not to make demands when you do not need to. This will be useful when there is an emergency or a definite outcome is needed[65].
• Choice and self-determination. Direct instructions are experienced as demanding, so it can be better to offer hints or vague outlines and to try to avoid showing there is an expectation[66]. If children feel they have no choice, they will be driven to say no, so it is helpful to try and identify which aspects of an activity children can control[67]. It is important that children know they can say no, and that they have some genuine control over decisions[68].  You can also imply rather than tell the child what is going to happen[69]. For example, rather than directly asking the child to write, or to move onto another activity, ask ‘which colour pen would you like to use?’ and ‘how much time do you need to finish this?’ [70]
• Avoiding praise. Many PDA children dislike being praised[71] or receiving comment about themselves or their work, especially if it was completed in response to a demand[72]. This may be because it reinforces their compliance, and is experienced as a further form of control[73]. These children may prefer to be praised for things they have chosen to do rather than something they cannot control[74]. Indirect praise and affirmation may be more well-received[75]. It may also be helpful to be clear that your comments are your own opinion on the situation, as positioning your opinion as fact may be seen as untrue or dishonest[76]. For example, you might say ‘I think you’ve tried very hard today’ or ‘I really liked it when…’[77].
• Creative strategies. Requests can be depersonalised through the use of visual symbol systems, written instructions and notes[78], by appealing to a greater authority (for example, ‘I’m sorry but that is a health and safety rule’)[79], or through the use of role play and drama[80] (which children with PDA usually relish[81]). The use of complex language and longer explanations can be effective, as these can come across as negotiative, and may also be intriguing to the child[82], while demands without detailed reasoning can appear irrational[83]. Humour can also be effective[84].
• Novelty and variety. Unlike other children with autism, for whom predictability and routine are important, PDA children benefit from novelty and variety, which they find intriguing[85]. Strategies need to be imaginative and flexible[86], and changed frequently[87]. The child’s strengths and interests can be used as a platform for further learning[88].
• A full picture of the child and their behaviour in different contexts is important, and this requires that teachers work with parents in a supportive and non-judgemental way[89].
• Self-understanding. Children benefit from building personal understanding about their needs and limitations[90]. It is also important to build self-esteem[91].
• De-escalation techniques. When children have an outburst, these should be seen as panic attacks and children should be offered reassurance, calming, and de-escalation techniques[92]. As PDA children are particularly sensitive to and adept at reading the emotions and reactions of those around them, it is important to stay calm and level in your own emotions[93]. Punishment is ineffective[94], and is likely to exacerbate problems[95].

Further reading

Autism West Midlands. (2018). Pathological Demand Avoidance: Behavioural strategies.  https://autismwestmidlands.org.uk/wp-content/uploads/2018/10/PDA_October_2018.pdf

Christie, P. (2007). The distinctive clinical and educational needs of children with Pathological Demand Avoidance Syndrome: Guidelines for good practice. Good Autism Practice Journal, 8, 3-11.

Christie P., Duncan, M., Fidler, R., & Healy, Z. (2012). Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals. Jessica Kingsley Publishers.

Hylton, C.  (2010). Pathological Demand Avoidance Syndrome (PDA).  http://www.pdaresource.com/files/Cerebra_PDA.pdf

Endnotes

[1] Christie, P. (2016). What is PDA? https://pdaanz.wixsite.com/pdaanz/what-is-pda-1

[2] PDA Society. (2022). What is demand avoidance? https://www.pdasociety.org.uk/what-is-pda-menu/what-is-demand-avoidance/

[3] Hylton, 2010

[4] Hylton, 2010

[5] O’Nions, E., Viding, E., Greven, C. U., Ronald, A., & Happé, F. (2014). Pathological demand avoidance: Exploring the behavioural profile. Autism, 18 (5), 538–544. https://doi.org/10.1177/1362361313481861

[6] Hylton, 2010

[7] Newson, E., Le Maréchal, K., & David, C. (2003). Pathological demand avoidance syndrome: A necessary distinction within the pervasive developmental disorders.  Archives of Disease in Childhood, 88 (7), 595-600.

[8] Christie, 2016

[9] Christie, 2007

[10] Christie, 2016; Hylton, 2010

[11] Autism Spectrum Australia. (2022). What is autism? https://www.autismspectrum.org.au/about-autism/what-is-autism;

Hylton, 2010.

[12] Christie, 2016; Hylton, 2010.

[13] Hylton, 2010

[14] Moore, A. (2020). Pathological demand avoidance: What and who are being pathologised and in whose interests? Global Studies of Childhood, 10 (1), 39–52. https://journals.sagepub.com/doi/10.1177/2043610619890070

[15] Milton, D. (2013). ‘Nature’s answer to over-conformity’: Deconstructing Pathological Demand Avoidance. Autism Experts Online. Retreived from Kent Academic Repository.

[16] Hylton, 2010

[17] O’Nions, E. (2013). An examination of the behavioural features associated with PDA using a semi-structured interview. (Adapted from doctoral thesis, submitted to King’s College, London);

Christie, P. (2007). The distinctive clinical and educational needs of children with Pathological Demand Avoidance Syndrome: Guidelines for good practice. Good Autism Practice Journal;

Hylton, 2010.

[18] Hylton, 2010

[19] O’Nions et al., 2014

[20] PDA Society. (2022).

[21] Hylton, 2010

[22] Hylton, 2010

[23] Hylton, 2010; O’Nions, 2013

[24] Hylton, 2010; O’Nions, 2013.

[25] Christie, 2007

[26] Christie, 2007

[27] Christie, 2007; Hylton, 2010.

[28] Hylton, 2010

[29] Hylton, 2010

[30] Hylton, 2010

[31] Hylton, 2010

[32] Hylton, 2010; Christie, 2007.

[33] Hylton, 2010; Christie, 2007.

[34] O’Nions et al., 2014

[35] Hylton, 2010; O’Nions et al., 2014

[36] O’Nions, 2013; O’Nions et al., 2014 ; Christie, 2007.

[37] O’Nions, 2013

[38] Christie, 2007

[39] Newson et al., 2003

[40] Christie, 2007

[41] Christie, 2007

[42] O’Nions, 2013

[43] Christie, 2007

[44] O’Nions, 2013

[45] Hylton, 2010

[46] O’Nions, 2013; Hylton, 2010; Christie, 2007.

[47] Hylton, 2010; Christie, 2007.

[48] Hylton, 2010

[49] Newson et al., 2003; Hylton, 2010.

[50] Hylton, 2010

[51] Christie, 2007

[52] Christie, 2007

[53] Christie, 2007

[54] Moore, 2020

[55] Christie, 2007

[56] Hylton, 2010

[57] Christie, 2007; Autism West Midlands, 2018.

[58] Christie, 2007

[59] Autism West Midlands, 2018

[60] Autism West Midlands, 2018

[61] Autism West Midlands, 2018

[62] Hylton, 2016; Christie, 2007.

[63] Christie, 2007

[64] Christie, 2016

[65] Autism West Midlands, 2018

[66] Autism West Midlands, 2018

[67] Autism West Midlands, 2018

[68] Autism West Midlands, 2018; Christie, 2007.

[69] Autism West Midlands, 2018

[70] Autism West Midlands, 2018

[71] Hylton, 2010

[72] Christie, 2007

[73] O’Nions et al., 2014

[74] Autism West Midlands, 2018

[75] Christie, 2016

[76] Autism West Midlands, 2018

[77] Autism West Midlands, 2018

[78] Christie, 2007, 2016

[79] Christie, 2007, 2016

[80] Christie, 2007

[81] Hylton, 2010

[82] Christie, 2007

[83] Autism West Midlands, 2018

[84] Hylton, 2010; Christie, 2007.

[85] Hylton, 2010; Christie, 2007; Newson et al., 2003.

[86] Hylton, 2010

[87] Christie, 2007

[88] Christie, 2007

[89] Christie, 2007

[90] Christie, 2007

[91] Christie, 2007

[92] Hylton, 2010

[93] Christie, 2007

[94] Hylton, 2010

[95] O’Nions, 2013

By Dr Vicki Hargraves

PREPARED FOR THE EDUCATION HUB BY

Dr Vicki Hargraves

Vicki runs our early childhood webinar series and also is responsible for the creation of many of our early childhood research reviews. Vicki is a teacher, mother, writer, and researcher living in Cairns, Australia. She completed her PhD using philosophy to explore creative approaches to understanding early childhood education. She is inspired by the wealth of educational research that is available and is passionate about making this available and useful for teachers.