This page explores the key features of the PDA profile, reasons for missed diagnosis, common misdiagnoses and co-occurring conditions.
For further information on diagnosis please see Diagnosing PDA.
PDA profile of autism – key features
Currently, because diagnostic manuals do not specify any sub-groups of autism, there are no formal ‘diagnostic criteria’ for identifying a PDA profile of autism. The key features originally put forward by Elizabeth Newson are evolving based on clinical practice and research. As our understanding of the PDA profile grows, the list of key features is likely to be refined over time.
The distinctive features of a PDA profile of autism are:
- resisting and avoiding the ordinary demands of life – the key words here are ‘ordinary demands’, so this might include getting up, getting dressed, eating a meal or washing. Significantly, it includes things that someone might want to do/enjoy. For more info see What is demand avoidance?
- using ‘social’ strategies as part of the avoidance – this means not just saying no, withdrawing, shutting down or running away, but a variety of avoidance approaches including distraction, making excuses, physical incapacitation, withdrawing into fantasy, procrastination, controlling, reducing meaningful conversation or masking. For more info see ‘Demand avoidance of the PDA kind’.
- appearing sociable, but lacking some understanding – meaning that individuals may appear more sociably ‘able’ than one might expect (with, for instance, more ‘socially accepted’ eye contact or conversational skills) but that this may mask underlying differences/difficulties in social interaction (for instance, not seeing any difference between themselves and an authority figure) and communication (for instance, whilst an individual may be very articulate, their understanding of others may not be so robust).
- experiencing intense emotions and mood swings – meaning difficulties with emotional regulation, rapid mood swings, impulsiveness and unpredictability.
- comfortable in role play, pretence & fantasy – this can sometimes be to an extreme extent with other personas (be that a person or an animal) being adopted for a prolonged period of time. The line between fantasy and reality can sometimes become blurred.
- focusing intently, often on other people – with PDA, “repetitive or restrictive interests” are often social in nature, relating to real or fictional people
- a need for control which is often anxiety related.
In addition, with PDA, we know that individuals are unlikely to respond to conventional approaches. The response to different approaches is being used as a way to support identification of the PDA profile (for example in the pathway being developed in Solihull). Helpful approaches for PDA – based on trust, negotiation, collaboration, flexibility and careful use of language – can be found in the family life and adult life sections.
Positive PDA: Last, but by no means least, it’s so important to remember the many positive qualities which often seem to accompany a PDA profile 🙂 This word map is made from the words most commonly used by parents to describe their children’s many qualities.
We know that autism is dimensional – it involves a complex and overlapping pattern of strengths, differences and challenges.
Presentations can change over time, or vary depending on someone’s overall physical health and mental well-being (including any co-occurring conditions), or vary depending on the environment someone is in (not just the physical setting but also interpersonal relationships).
This also applies to different ‘profiles’ of autism, meaning that PDA will present differently from one person to another.
Some individuals may have a more extrovert or active presentation – where demand avoidance may be overt, physical, aggressive or controlling. Others have more introvert or passive presentations – where demands may be resisted more quietly, anxiety is internalised and difficulties are masked. Many may have a variable presentation, depending on other factors like how well they are managing at the time, the environment, the setting, their age and so on …
Missing a diagnosis
The PDA profile of autism is often missed – either because an assessment for autism is refused or because, following an assessment, no diagnosis is given or because autism is diagnosed but no mention is made of PDA traits (which in turn means the helpful approaches for PDA aren’t signposted).
This may be because the PDA profile may not always ‘look like’ what many people think autism ‘looks like’ and the breadth and dimensionality of the autism spectrum is not fully understood.
Elizabeth Newson referenced this when she described PDA as being ‘like autism, but …’. For instance:
In PDA, social interaction and communication skills – including eye contact and conversational timing – can seem more conventional or ‘socially accepted’. Indeed, individuals are often refused autism assessments on these grounds even though NICE guidelines specifically state “Do not not rule out autism because of good eye contact, smiling and showing affection to family members, reported pretend play or normal language milestones” (point 6, pg 5). However, these skills can be misleading and often mask underlying difficulties. For example, whilst expressive language can be fluent and articulate, receptive language may not be so robust. And whilst routines and rigidity may not seem so evident in PDA, intolerance of uncertainty is a key factor and individuals often impose rules/routines on others.
With PDA, individuals are often very comfortable in role play and pretend – to such an extent that a person may actually take on the role and style of other people or animals for extended periods of time. This may be an avoidance approach, a coping mechanism or a response to anxiety, and when examined more closely may sometimes be seen to be rather repetitive in nature or somewhat socially naive.
Some autistic people are very adept at masking, and this is very common with PDA. Masking means that people may be able to hide or ‘hold in’ some of their differences/difficulties in certain environments or with certain people. Significantly, this means that challenges reported in one setting (often home) may not always be seen in others (such as school, college or work) – this can lead to misunderstandings. For further information about masking, please see Children who ‘mask’ or ‘camouflage’ their Autism and It’s not only girls who can mask written by Consultant Clinical Psychologist Dr Judy Eaton and Different behaviour between school and home by the National Autistic Society.
Demand avoidance in itself can be dimensional – varying according to a person’s tolerance for demands at any given time, or varying in different environments or with different people, for instance – so the presentation may be quite variable, unpredictable and confusing.
Last but not least, we often hear that parenting is blamed for a child’s PDA presentation/behaviours (usually due to a lack of awareness and understanding of the PDA profile and the unconventional parenting approaches or support strategies which are helpful with PDA). This can leave parents feeling very isolated and desperate, and in a few cases has even led to suspicions of Fabricated or Induced Illness.
In addition to an autism diagnosis being missed, PDA traits can be incorrectly attributed to a variety of other conditions. Overlaps in characteristics and diagnostic criteria can make it difficult to ‘unpick’ exactly what is underlying complex presentations. This underlines the need for very detailed, multidisciplinary assessments (please see the PDA Development Group document “What makes a good diagnostic assessment?“) – including a detailed developmental history, direct observation and information from a range of settings and other professionals – in order to establish a clearer understanding of each individual’s profile.
The most common conditions which may be confused with PDA are: Oppositional Defiant Disorder (ODD), Conduct Disorder (CD), Reactive Attachment Disorder (RAD), Personality Disorders and Developmental Trauma. These are briefly explored below, based on input from members of the PDA Development Group.
ODD is described as ‘persistent negative, hostile and defiant behaviour’ towards authority. Superficially there may be some similarities with a PDA presentation, however ODD is not an autism spectrum condition and therefore the root cause is different. Other points of difference include the fact that the more ‘social’ avoidance approaches seen in PDA (e.g. distraction, making excuses or procrastination) are not usually seen with ODD; positive parenting courses and reward-based approaches are beneficial for ODD, but ineffective for PDA; and children with ODD often appear ‘streetwise’ and are well aware of social hierarchy whereas with PDA, children are usually quite socially naive and believe themselves equal to adults.
Conduct Disorder is described as ‘a repetitive and persistent pattern of behaviour, in which the basic rights of others or major age appropriate societal norms or rules are violated’ where the behaviours are ‘with intent’ or deliberately callous. This contrasts with a PDA profile, where behaviours are due to an autism spectrum condition and are not intentional.
Reactive Attachment Disorder is characterised by ‘inhibited, emotionally withdrawn behaviour’ and ‘persistent social or emotional disturbance’ which could again seem superficially similar to a PDA presentation, however the criteria for diagnosis of attachment disorder also includes patterns of ‘extremes of insufficient care’ in a child’s early life. So, once again, the underlying cause is different and a reactive attachment disorder diagnosis should not normally be given where autism has been diagnosed (autism can sometimes mean that attachment follows a different pattern for reasons that do not relate to an attachment disorder).
Personality Disorders develop in response to stress and can co-occur alongside autism, especially in women and girls whose autism hasn’t been diagnosed or supported. The defining features of personality disorders are: distorted thinking patterns, problematic emotional responses, over- or under-regulated impulse control and interpersonal difficulties. For a diagnosis, significant and enduring difficulties in at least two of these areas must be demonstrated. Personality disorders are not normally diagnosed in children, but sometimes Emerging or Borderline Personality Disorder is diagnosed in adolescents. Personality disorders are a description of behaviours which can sometimes overshadow the possibility of underlying autism, especially when the autism is not recognised as is often the case with a PDA profile or a female presentation.
Developmental Trauma, like PDA, is not ‘in the diagnostic manuals’ but is frequently used to describe the impact of early, repeated abuse, neglect, separation or adverse experiences that happens within a child’s important relationships and which can lead to behaviours that on paper might look similar to PDA. However, once again, the root causes are different and there are qualitative differences in the presentations.
It’s quite common for other conditions to exist alongside autism (also known as ‘co-morbidities’) and for individuals to have multiple diagnoses (at our conference in 2015, the average number of diagnoses was 2.5 per child).
Estimates vary, but it is thought that around 40% autistic people are also ADHD, for instance.