Obsessive behaviour<\/li>\n<\/ul>\nNewson formulated the term \u2018Pathological Demand Avoidance\u2019 and called for it to be recognised as a separate, but related, condition or \u2018syndrome\u2019 within the broader category of Pervasive Developmental Disorders. Newson\u2019s research and clinical work was continued by her colleague Phil Christie and a team of clinicians and educationalists who sought to further develop understanding of PDA, increasing specificity of \u2018key features\u2019 and reflecting evolving terminology [2]. Further supporting research was published by a team at University College London in 2014 [3] and 2016 [4].<\/p>\n
PDA as a profile on the autism spectrum<\/h3>\n
The most recent diagnostic manual, DSM-5, has moved from the term Pervasive Developmental Disorder to Autism Spectrum Disorder (ASD), reflecting the complexity and heterogeneity of autism. As such, the current use of the term \u2018autism\u2019 is much broader than it was in Newson\u2019s day. As a result of this broadening of the way that autism and the autism spectrum are seen, the contributors\u2019 view is that PDA is currently best understood as a \u2018profile\u2019 (or cluster of traits) on the autism spectrum.<\/p>\n
The contributors report that all the individuals they have signposted as having a PDA profile met the diagnostic criteria for ASD, even though initial presentations may be misleading in some cases (see section 4.3). This concurs with the observations from the team at University College London who noted that their work \u2018suggests that those with substantial features of extreme\/pathological demand avoidance have similar levels of autistic traits to those with ASD who do not show this pattern\u2019 [4].<\/p>\n
Both academics and clinicians describe a cluster of recognisable traits that include social communication and interaction difficulties and \u2018obsessive\u2019 interests, which by definition fit the ASD criteria. Further, Schedule 3 of NICE Guidance on Autism Spectrum Disorder in Under 19s (CG128) describes \u2018signs and symptoms\u2019 of autism which includes \u2018demand avoidance\u2019 as a trait or dimension to look for.<\/p>\n
The primary reasons for identifying a PDA profile are to help individuals, and those living and working with them, make sense of a complex presentation that is otherwise difficult to explain; and to signpost the differentiated strategies and approaches \u2013 based on an indirect, low arousal style that gives an individual more choice and control (see section 5) \u2013 that can prove transformational, as these quotes highlight:<\/p>\n
\u201cOnce I understood about PDA I was better able to articulate my experience of the world to my psychiatrist and take a proactive approach to managing the daily demands I face. Previously I\u2019d forced myself into mental, financial and physical ruin too many times, just because the world tells me that I \u2018should be able to do it because everybody else can\u2019.\u201d \u2013 PDA adult<\/em><\/p>\n\u201cWe started to change our parenting approach (which was hard) and started to see a difference in our son\u2019s behaviour and emotions. Now our family is a calmer place, he is in a mainstream school with teachers who use PDA approaches, and when his anxiety goes up for whatever reason we know how to respond (and how not to respond). It\u2019s been life-changing.\u201d \u2013 parent<\/em><\/p>\n\u201cWe thought one of our pupils may be autistic but her needs were very different to other autistic pupils we\u2019d supported in school before and none of our usual approaches helped. Searching for answers led us to PDA. Seeing her through this lens enabled us to truly understand her and successfully adapt our practices by building trust and embracing a flexible and collaborative approach.\u201d \u2013 teacher<\/em><\/p>\n\u201cWe were increasingly perplexed by the complex presentation of one of our service users and our team\u2019s inability to meet her needs despite our very best efforts. Whilst she doesn\u2019t have a formal diagnosis, following PDA training we were able to devise some unique approaches that have been highly effective. Using these approaches is the difference between her being able to live in her own home and being held in a secure hospital.\u201d \u2013 social care manager<\/em><\/p>\nIdentifying a PDA profile forms part of the \u2018personalisation and contextualisation\u2019 of an autism diagnosis and the use of \u2018specifiers\u2019 to identify individual characteristics. This approach is fundamental to high quality clinical standards in relation to ASD, and is recommended in the ESCAP (European Child & Adolescent Psychiatry) practice guidance for autism [5].<\/p>\n
The contributors readily acknowledge the lack of, and need for, clinically-based research, and that at present there is a range of academic and clinical perspectives about PDA. For instance, in 2018, Professor Jonathan Green et al [6] concluded that there was insufficient evidence to support classifying PDA as a separate syndrome and that it was unlikely to be identified as a discrete diagnosable \u2018sub-type\u2019 in future. They acknowledged the existence of \u2018complex presentations\u2019 in children and young people, and proposed an alternative formulation through the use of co-occurring diagnoses alongside ASD, including ODD (Oppositional Defiant Disorder) and anxiety. Others, including Soppitt et al [7] propose a formulation including co-occurring diagnosis of ADHD, trauma and sensory processing difficulties alongside ASD.<\/p>\n
Whilst waiting for further research to be undertaken, the contributors to this guidance take the view that seeing differences and difficulties holistically, rather than addressing traits in isolation, will lead to the most helpful intervention and support [8]; and also that the cluster of traits in the PDA profile is sufficiently distinctive and easy to identify in practice.<\/p>\n
The latest guidance from the Royal College of Psychiatrists (The Psychiatric Management of Autism in Adults (CR228)) and the British Psychological Society (Working with Autism: best practice guidelines for psychologists) includes information on PDA, acknowledging the areas of debate and confusion as well as describing what to look out for [9].<\/p>\n
Post hoc analysis of the assessment results of 351 children who had been assessed for autism, led by Dr Judy Eaton and Kaylee Weaver [10] in 2020, concluded that there were statistically significant differences on the Autism Diagnostic Observation Schedule (ADOS-2) scoring between autistic children with and without a PDA profile. Further work is being done to see if this can help provide a consistent framework for aiding the identification of a PDA profile. Their paper went on to identify the \u2018themes\u2019 garnered from developmental histories that were very much more common in a PDA profile of autism, and which help to distinguish PDA from other conditions such as attachment disorders (see section 4.3).<\/p>\n
Marked demand avoidance<\/h2>\n
Avoidance of demands is not unusual. Most of us will at some point avoid an activity that we do not consider interesting or find aversive. Many individuals can present as \u2018oppositional\u2019 and unwilling to follow instructions at certain times or developmental stages, or if their needs are not recognised and appropriately supported. With dull\/routine tasks, most of us manage to fulfil our obligations eventually, but specific activities that are highly anxiety-provoking (which will vary from one individual to the next) may be permanently avoided. It is important to differentiate this sort of \u2018ordinary\u2019 demand avoidance from the marked demand avoidance which has a significant impact on an individual\u2019s everyday life and wellbeing.<\/p>\n
Marked demand avoidance may have multiple underlying causes, as explained below, and by no means all individuals displaying these behaviours will have a PDA profile. In fact, whilst there is no specific prevalence data, a PDA profile appears to be relatively rare [11].<\/p>\n
When to consider a PDA profile<\/h3>\n
A PDA profile is usually identified as part of an ASD or more holistic neurodevelopmental assessment, when marked demand avoidance has been mentioned in referrals or screening questionnaires. However, there may be other times when a health, education, social care or other professional involved with an individual and their family should be encouraged to consider a PDA profile as being an underlying cause for behaviours or presentations which include marked demand avoidance. These times may include, but are not limited to:<\/p>\n
\n- Reports of \u2018stubborn\u2019 refusal around ordinary, everyday tasks including things an individual is known to like\/enjoy or things they need to do (eat, drink, wash, use the bathroom).<\/li>\n
- Individuals with a list of previous diagnoses, or indeed no formal diagnoses at all, but who are still considered as \u2018perplexing\u2019.<\/li>\n
- Those who have an ASD diagnosis but it \u2018doesn\u2019t quite fit\u2019 or who are on the cusp of, but do not meet, ASD diagnostic criteria (see section 4.3 for further context).<\/li>\n
- Someone with an ADHD diagnosis \u2013 ADHD often co-occurs alongside ASD and can sometimes overshadow autistic traits in early childhood.<\/li>\n
- Someone for whom no previous suggestions for support have helped (regardless of existing diagnosis) or for whom \u2018usual\u2019 autism strategies have been tried but not worked (for those with an autism diagnosis).<\/li>\n
- A history of missed appointments where the individual has been unable to access\/attend.<\/li>\n
- In childhood, regular school refusal and\/or repeated school exclusions.<\/li>\n
- In childhood, where very different presentations are reported between the school and home environments and\/or where a breakdown in communication has occurred between school and home.<\/li>\n
- Where concerns have been raised around unconventional parenting approaches and where it is perceived that a child is being accorded too much control. In some cases this may have led to consideration being given to investigating parents for FII (Fabricated or Induced Illness).<\/li>\n
- Individuals with complex needs who are seemingly \u2018stuck\u2019 within inpatient units or having difficulty managing in other settings.<\/li>\n
- Individuals with perplexing presentations who are in the criminal justice system.<\/li>\n<\/ul>\n
Key features of a PDA profile<\/h3>\n
Clinical practice and much of the research literature describe PDA as a \u2018constellation of traits\u2019 within autism \u2013 this is commonly described as a \u2018profile\u2019.<\/p>\n
Key features of a PDA profile<\/p>\n
![\"\"](\"https:\/\/www.pdasociety.org.uk\/pda2025staging\/wp-content\/uploads\/2025\/04\/ID-guide-flow-chart.webp\")
<\/p>\n