PDA (Pathological Demand Avoidance) is widely understood to be a profile on the autism spectrum, though we are still at an early stage in our understanding and PDA research is in its infancy.

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Whilst autism is a widely recognised term, our understanding of the full breadth and complexity of the autism spectrum is still evolving. The National Autistic Society explains autism as “a lifelong developmental disability which affects how people communicate and interact with the world”.

 

Many autistic advocates embrace the social model of disability and view a range of neurological differences as being part of a natural human variation (neurodiversity). We know that autism is dimensional – it involves a complex and overlapping pattern of strengths, differences and challenges that present differently from one individual to another and in the same individual over time or in different environments.

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A cluster of traits can be called a presentation or a profile – in some cases this can be quite different from what some people think autism ‘looks like’. This can lead to presentations in some people – including autistic women and girls, and PDA individuals – being missed altogether, misunderstood or misdiagnosed, which can in turn lead to poor outcomes.

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All research points to early identification and tailored support being the best predictor of positive long-term outcomes. Recognising these profiles signposts the approaches or support that will be most helpful for each individual.

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A PDA profile of autism means that individuals share autistic characteristics …

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• Currently defined as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviour, activities or interests” present since early childhood to the extent that these “limit and impair everyday functioning” (according to the Diagnostic and Statistical Manual Fifth Edition (DSM-5)).

• Often including a different sensory experience in relation to sight, smell, taste, touch, hearing, vestibular, proprioception and interoception.

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       and in addition:

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• Have a need for control which is often anxiety related.

• Are driven to avoid everyday demands and expectations (including things that they want to do or enjoy) to an extreme extent.

• Tend to use approaches that are ‘social in nature’ in order to avoid demands.

• Present with many of the ‘key features’ of PDA rather than just one or two.

• Tend not to respond to conventional parenting, teaching or support approaches.

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Information from the PDA Society website - click here 

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Pathological Demand Avoidance (PDA) by Penny Chapman

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Pathological Demand Avoidance (PDA) was first described by Professor Elizabeth Newson, a Consultant Child Psychologist (Newson et al, 2003) in the UK in the 1980s. The debate around PDA persists with difference of opinions on the diagnostic criteria, behaviour profile, name, and whether it should be an independent condition or a sub-type of Autism.

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The DSM-5 removed the need for 5 separate diagnoses under the umbrella of Pervasive Development Disorders (PDD), and combined them under continuum of Autistic Spectrum Disorder, (ASD).  (Faroy, Meiri, & S, 2016) By doing this the DSM-5 workgroup wanted to develop a clearer and simpler diagnostic system with improved recognition across all ages and abilities. (Happe, 2011) Therefore, on this premise as subtypes were removed to reduce the stigma for all autistic persons (Happe, 2011) it seems unlikely that PDA would be introduced as a sub-type.

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Regardless of the ongoing debate, and with the help of charities like the PDA Society and National Autistic Society the overwhelming opinion is that some children, and adults do identify with a PDA profile; and will need contrasting strategies to those routinely used with autistic individuals. (Christie, Duncan, Fidler, & Healey, 2011) (Woods, Demand Avoidance phenomena: circularity, integrity and validity - a commentary on the 2018 National Autistic Society PDA Conference, 2019) Strategies such as daily routine and a visual calendar of what is expected next of them can lead to high levels of anxiety due to the demand avoidance, whereas an autistic individual will take comfort from the structure.

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Christie et al, 2011 claimed that the understanding of PDA was 30 years behind that of Autism. (Woods, Demand Avoidance phenomena: circularity, integrity and validity - a commentary on the 2018 National Autistic Society PDA Conference, 2019)

 

What is Pathological Demand Avoidance and why is identification and recognition of the profile so important. (see appendix a)

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Although, there is insufficient research, evidence or a set-criteria to support PDA as a separate condition or sub-type of autism, there remains a strong pattern recognition, which is an important feature in clinical diagnosis. (Green, et al., 2018)

Newson and colleagues’ cited parents who remarked on this pattern recognition to support a separate demand avoidant concept as saying, “autism never made sense to us; this is the first time a diagnosis has made sense.”

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It is impossible to get away from everyday demands and expectations, even asking a child how their day was at school places an expectation on them to reply. Another dimension is internal demands such as hunger, when the child wants to eat but simply cannot because the feeling of hunger becomes a demand, likewise feeling hot or cold can provoke an overwhelming demand.

 

Many of these demand avoidant behaviours, especially the need for total autonomy and control can easily be mistaken for parental neglect, emotional abuse, lack of boundaries, and forced isolation.

 

As PDA is not widely recognised, experience of this profile is still in its infancy with many front-line professionals, like education and social care staff not having enough or any knowledge which makes it difficult to distinguish from parental abuse. (PDA Society , 2018)

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PDA strategies of collaborative parenting, full autonomy, low demand, negotiation, choices, and indirect affirmation are in total contrast to the rigidity, routine and structure exercised with autism and further highlights safeguarding concerns from those who lack the knowledge in this area.

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Appendix a

• Avoids everyday demands in life such as getting washed, dressed, brushing teeth, etc.

• May appear to be sociable but lacks comprehension especially around unspoken gestures.

• Will use social strategies, even invent quite elaborate stories to avoid demands like going out.

• The need for full autonomy and total control over their life and environment.

• Enjoys role play and may appear to live in a fictional world.

• Can easily develop obsessive behaviours around certain fictional characters or individuals.

• Disproportionate mood swings in response to demands or expectations.

• Dislike of praise.

• Debilitating levels of anxiety

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