Pathological Demand Avoidance in the New Zealand context

July 5, 2024

Proud male art teacher and cute student holding his painting showing it while facing the camera smiling very cheerfully

Autistic researcher, Sara Meyer and clinical psychologist, Jenny Gibbs share some background and current understandings of demand avoidance, also known as Pathological Demand Avoidance (PDA).

For some children and young people, demands and instructions are experienced as threatening or frightening intrusions on autonomy. This is a pattern of behaviour that is sometimes observed in Autistic and neurodivergent children, often to the confusion and frustration of parents and teachers. As an Autistic who experienced this phenomenon growing up, co-author Sara Meyer found herself physically unable to comply with even simple requests at times. She has always been interested in how we talk about and define these experiences. For now, this pattern of behaviour has come to be known as Pathological Demand Avoidance, or PDA.

The term ‘PDA’ was coined in the 1980s by Elizabeth Newson, a developmental psychologist. At a time when autism diagnoses were rare, reserved for children with severe developmental delays, Newson was looking for a way to describe the behaviour of some of the other children she saw in her practice. These children did not meet the criteria for autism as it stood at the time, but seemed to be uniquely resistant to everyday demands and requests. When asked to do things (or given ‘demands’), the children Newson was working with would often refuse. They seemed to experience high levels of anxiety in response to demands, and would use diversion, distraction, threats, or extreme behaviour to regain control or to avoid a given task. These features formed the basis for a diagnosis of PDA.

 

A father and son are assembling furniture in new house

40 years down the track, PDA is a relatively well-known term that many Autistic adults and children identify with. There are books, blog articles, YouTube videos, and many other resources dealing with the subject of PDA and the way that demands and requests are experienced by Autistic people. In recent years, increasing numbers of parents in the UK have approached clinicians seeking a diagnosis of PDA for their child, recognising their child in descriptions of PDA (Stuart et al., 2020).

The clinical status of PDA, however, is less clear cut. PDA is not currently included as an official diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM) or the International Classification of Diseases (ICD). As our understanding of autism has broadened, it is not clear that PDA symptoms are distinct enough from other characteristics of autism to warrant a new diagnostic category. PDA has also been talked about as a pattern of behaviour that may apply to a range of conditions, including but not specific to autism. Christopher Gillberg (2014), for example, observed that characteristics of PDA have been found in other clinical populations; other research has linked PDA to conduct disorder and ADHD (Kaushik et al., 2015). In addition, some Autistic researchers such as Damien Milton have suggested that the category of PDA pathologises Autistic autonomy, implying that there is something wrong with Autistic people saying no (Milton, 2013).

The published literature on PDA is relatively limited. A 2021 review identified 13 studies of PDA in children and adolescents, but noted that many of these studies are weakened by methodological problems (Kildahl et al., 2021). Some are case studies, with very small numbers of participants, and most rely on parents’ descriptions and ratings of PDA symptoms.

This has been a point of criticism for Autistic academics such as Damien Milton and Allison Moore, who have argued that PDA describes behaviour from the outside rather than from the viewpoint of the Autistic person. At the very least, more research is needed to determine whether PDA should be considered a valid diagnostic category, and to refine the instruments used to measure its characteristics.

It is also worth noting that avoidant behaviour can be a common response to feelings of anxiety. As Autistic people are especially vulnerable to anxiety and stress, the presence of avoidance behaviour in Autistic behavioural profiles is unsurprising. Some research has shown that Autistic children more often display externalising behaviour in response to anxiety compared to typically developing children or children with Down Syndrome (White et al., 2009). This includes some of the behaviour that we typically see in PDA, such as challenging authority, acting out, yelling, or expressing anger. With this in mind, PDA may simply describe a style or expression of anxiety that is experienced by some Autistic people.

PDA has also been linked to differences in social communication and, in particular, difficulty recognising social hierarchies (Gillberg, 2015). An Autistic child may not intuitively experience authority in the same way as a typically developing child; they may not see the benefits of complying with adult requests, or realise that for the most part, adults are there to protect and support them. Without this understanding, it may be difficult for an Autistic child to develop the feelings of trust and safety that they need to comply with requests or demands. The child may feel violated or frightened, resulting in the avoidant behaviour we see in PDA (Woods, 2019). When we think about how much security typically developing children derive from their relationships with close adults, it becomes clear that Autistic children may be uniquely vulnerable in structured social settings.

This was Sara’s experience as an Autistic young person who did not understand that teachers, parents, and other adults were often in a position of authority. She didn’t notice the way the social environments were structured, and didn’t pick up on cues that signaled authority or status. For her, all people were equal and nobody had the right to tell anybody else what to do. If they did, she reasoned, there was likely something very wrong with them. Equality and autonomy were some of her earliest values as a young person.

 

A detour into the complexities of diagnosis

There is no specific “test” for neurodevelopmental conditions including autism, and whether a diagnosis is made is influenced by many factors. All diagnoses are essentially a consensus agreement (a “social construction”) amongst current experts about the cluster of behaviours, characteristics or traits which must be seen in order for a diagnosis to be made. These consensus agreements change over time in response to current thinking and research, but are also shaped by societal factors. The DSM used by diagnosticians has changed enormously since it was first published in 1952, and descriptions of autism are now much broader. This has led to a significant increase in rates of diagnosis. 

 

 Proud male art teacher and cute student holding his painting showing it while facing the camera smiling very cheerfully

More recently, as social media and other online platforms have become widespread, lived perspectives on autism and PDA have become more prominent. This has been a wonderful thing, expanding clinical and societal understandings of autism and other forms of neurodivergence, and ensuring that meaningful supports and accommodations are made available. It has also meant, though, that there is something of a mismatch between the conversation that is taking place online, and diagnostic criteria, terminology, and access to disability services.

When it comes to PDA, for example, it’s clear that the term has value as a descriptive profile that captures Autistic experiences of the world. Many Autistic people have found that information about PDA has helped them understand themselves better, giving them language and context to make sense of confusing feelings and experiences. Where it becomes tricky, though, is when we look at PDA as a clinical diagnosis, and consider that in light of accessing disability services in New Zealand.

 

The utility of seeking a PDA diagnosis in New Zealand

One of the main reasons for seeking a diagnosis is to access services. In New Zealand, a disability diagnosis is necessary to be eligible for a needs assessment for funded services through the Needs Assessment and Service Coordination services (NASC). According to the Ministry of Health, “A person with a disability is someone who has been identified as having a physical, intellectual, or sensory disability (or a combination of these) which is likely to continue for a minimum of six months and result in a reduction of independent function to the extent that ongoing support is required.”

A diagnosis of PDA has limited utility in New Zealand as it is not a disability diagnosis and therefore in isolation does not provide access to any disability supports. It is worth noting that Fetal Alcohol Spectrum Disorders (FASD) are in the same category; a diagnosis of FASD in itself does not currently provide access to disability supports. These only follow if there is an additional diagnosis of autism or intellectual disability.

It is important to point out that in New Zealand, a diagnosis is NOT required to access additional education resources. Early intervention services and learning support resources are distributed on the basis of need, not diagnosis, although many children who access these resources do in fact have a diagnosis.

Access to services aside, diagnosis also promotes understanding about the condition, the person themselves, for families, educators and wider communities. A diagnosis can provide a great sense of relief for families; their child has something that can be named and understood and it is not their fault. There are also negatives about diagnoses; people may see the diagnosis, not the person, and sometimes diagnoses can in themselves be stigmatising.

 

Using labels with caution

A further concern is that diagnostic labels can result in a lazy approach to thinking about the support needs of children. To say “this child has PDA, so the usual strategies for working with Autistic children won’t work” is simplistic and dangerous. Professionals in health, disability and education should provide adaptations and supports based on a comprehensive assessment of an individual child’s strengths and difficulties. These adaptations should not be a “cookbook” response to a particular label. A diagnostic label does not in itself tell us what is required. We do not expect typical children to always respond the same way to the same strategies, so why would we expect that in a child whose development has followed a different trajectory?

Let’s remember that ultimately people are individuals and we should be carefully thinking about them as such, rather than using a diagnostic label to explain everything about them.

 

References 

Gillberg, C. (2014). PDA — Public display of affection or pathological demand avoidance? Reflections on O´Nions et al. (2014). Journal of Child Psychology and Psychiatry 55(7). https://doi.org/10.1111/jcpp.12275

Gillberg, C., Gillberg, I.C., Thompson, L.  Biskupsto, R., & Billstedt, E. (2015). Extreme (“pathological”) demand avoidance in autism: A general population study in the Faroe Islands. European Child and Adolescent Psychiatry 24(8), 979-984. https://doi.org/10.1007/s00787-014-0647-3

Kaushik, A., Ozsivadjian, A., & Baird, G. (2015) Extreme demand avoidance: Towards a dimensional approach in children presenting with complex neurodevelopmental disorders and avoidance of demands. Paper presented at Royal College of Psychiatrists Faculty of Child and Adolescent Psychiatry Annual Conference, Brighton. London: Royal College of Psychiatrists.

Kildahl, A. N., Helverschou, S. B., Rysstad, A. L., Wigaard, E., Hellerud, J. M., Ludvigsen, L. B., & Howlin, P. (2021). Pathological demand avoidance in children and adolescents: A systematic review. Autism, 25(8), 2162-2176. https://doi.org/10.1177/13623613211034382

Milton, D. (2013) ‘Natures answer to over-conformity’: Deconstructing pathological demand avoidance. Autism Experts Online. Retrieved from
https://www.pdasociety.org.uk/resources/natures-answer-to-over-conformity-deconstructing-pda

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

White, S. W., Oswald, D., Ollendick, T., & Scahill, L. (2009). Anxiety in children and adolescents with autism spectrum disorders. Clinical Psychology Review, 29(3), 216–229. https://doi.org/10.1016/j.cpr.2009.01.003

Woods, R (2019) Pathological demand avoidance: Is it time to move beyond the pathological need to not to develop more inclusive pedagogical practices? Autonomy, the Critical Journal of Interdisciplinary Autism Studies 1(6)

UN General Assembly. (2007, January 24), Convention on the Rights of Persons with Disabilities: Resolution / adopted by the General Assembly, 24 January 2007, A/RES/61/106, available at: https://www.refworld.org/docid/45f973632.html [accessed 1 September 2023]

 

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