About PDA  lightbulb3

Pathological Demand Avoidance (PDA) is now widely recognised as a distinct profile of autism which is present in some people on the spectrum. Individuals with a PDA profile will share similar difficulties to others on the autism spectrum in the following areas.

  • Social Communication Difficulties
  • ​Social Interaction Difficulties
  • Restrictive and Repetitive patterns of behaviour (including sensory seeking or sensory avoiding behaviour)

But, the central difficulty for people with PDA, and for those who are supporting the person with PDA, is their “anxiety driven need to be in control and avoid other people’s demands and expectations.” Understanding PDA in Children. Christie, Duncan, Fidler & Healy (2011). Furthermore, research conducted by Newcastle University in 2016 concluded that this extreme anxiety could be underpinned by an intolerance of uncertainty, and that IU and anxiety were both associated with PDA behaviour in children.

This extreme avoidance extends to the most basic demands of everyday living and is not limited to the avoidance of unpleasant, difficult, specific anxiety provoking or unappealing tasks only. An individual with PDA will also have tremendous difficulty complying with their own self-imposed expectations and with doing things that they really want to do.

The extreme nature and the obsessive quality of the demand avoidance seen in individuals with PDA is very different to that which is seen in the general public and  other individuals with a typical presentation of ASD. However, it is important to recognise that the extreme demand avoidance and need for control are underpinned by their particular profile of ASD.

Autism is dimensional and the different profiles, including PDA, affect people in varying ways and to different degrees. Other individuals on the autism spectrum can display one or more of the key features of PDA. But, when many of the key features of PDA are present, in one individual, alongside the other features of ASD, it is helpful to use the diagnosis of an Autism Spectrum Disorder (ASD) with a profile of PDA. This is because the identification of the PDA profile has implications for successful management and intervention.

PDA is a lifelong disability and, as with other profiles of autism, people with PDA will require different amounts of support, at different stages of their life, depending on how their condition affects them. Limited evidence so far suggests that the earlier the diagnosis and the better support they have, the more able and independent they are likely to become.


What does it feel like to have PDA?

Before we have a more detailed look at the characteristics and the key features of the PDA profile of ASD, it is helpful to understand how this condition feels and affects the person with PDA. Acknowledging, empathising and understanding the difficulties and subsequent vulnerability that exists beneath, what can often be viewed as a robust and volatile exterior, is often the key to successfully supporting a person with PDA.

It makes me feel afraid when people look at me, but I don’t know why.   
 
I feel as if there are two versions of me on the inside. Constantly fighting with each other. One that wants to do things but my other self – stops me. It feels like I’m being torn apart from the inside out and the monster that is killing me, on the inside, is me!
 
It makes me feel sad when I get so angry I hit people. My insides feel tight and I can’t hear properly. After I don’t remember what I’ve done.
 
For me it’s like being in a poorly designed, constantly malfunctioning robot. At several points throughout my life, I spiralled into dark depression amidst self-blame and self-hatred.

Although I am acting angry, what I am feeling is terror.

It is important to recognise and to remember that these individuals have a 'hidden disability' and are trying to fit into a world they find confusing and frightening but long to be a part of.


What are the key features of Pathological Demand Avoidance?

  • Resisting and avoiding the ordinary demands of life, e.g. This might include getting up, joining a family activity or getting dressed to name but a few. This may be the case even when the person wants to do what has been suggested, such as watching a film that they have been looking forward to. When initial avoidance strategies, such as those described below fail; the situation can quickly escalate and some individuals may resort to more extreme measures to avoid the demand such as shouting, swearing, hitting and damaging property. Others may, shut down, withdraw or run away. This is a meltdown and should be viewed as a panic attack.

  • Using social strategies as part of the avoidance, e.g. Distracting – “I like your earrings, where did you get them from”, giving excuses – “I can’t walk because my legs are broken”, delaying – “I’ll do it in ten minutes”, withdrawing into fantasy – “I’m a cat and cat’s don’t wear clothes” and drowning out your request with noise “I can’t hear you because I’m singing – la, de, la, de, la …..”.

  • Appearing sociable on the surface, e.g. People with PDA may have a more socially acceptable use of eye contact. Their conversational skills may appear better than others on the autism spectrum, but this is still often lacking depth in their understanding. For instance, not seeing a difference between themselves and an authority figure, having difficulty in adjusting their own behaviour in response to the needs of others and not always understanding how, or why their behaviour can affect others at an emotional level and thus have a negative impact on their relationships.

  • Excessive mood swings and impulsivity, e.g. They can have great difficulty in regulating their own emotions and controlling their reactions to situations and people. The individual can rapidly switch from happy and engaging – to angry or sad in seconds, often with no visible build up or warning to others. This may be in response to pressure of demands and perceived expectations.

  • Being comfortable in role play and pretence, sometimes to an extreme extent and the lines between reality and pretence can become blurred, e.g. Often adopting the persona of a figure of authority in role play scenarios to such an extent that they believe that they are that person. This role may often require them to oversee and direct others and as such, remain in control of the play e.g. taking on the role of a teacher when playing with peers. Role play can be used as a strategy to avoid demands made by others such as “I can’t pick that up because I’m a tractor and tractors don’t have hands” or role playing the compliant child in school to reduce demands by flying under the radar. Withdrawing into fantasy can also be a form of self-protection, a place where they can go to when real life becomes too difficult to manage and to cope with.

  • ‘Obsessive’ behaviour that is often social in nature, People with PDA may often become obsessive about other people, either real or fictional, from either a love or hate perspective, which can make relationships very tricky. Newson et al, noted that the demand avoidant behaviour itself also has an obsessive quality.

The “pathological” nature of the demand avoidance means that it always has obsessional force; but role play is the second major obsession, which gives the impression of more socially oriented obsessions in PDA than in autism/Asperger’s syndrome. E Newson, K Le Maréchal, C David, Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders, 2003


Characteristics of the PDA profile


People with PDA may often appear to have better social communication and interaction skills than other individuals on the spectrum. But this understanding of social interaction and communication can often be at a surface level only and lacking in depth of understanding. Individuals may copy and mimic the social interactions of those around them as a means of coping and fitting in. Also, the apparent verbal fluency of some people with PDA can disguise genuine difficulties in understanding and processing verbal communication. These characteristics mean that some of their difficulties in these areas may be less obvious at first.

Young Children Dressing Up As Professions


Individuals with PDA can be controlling and dominating, especially when they feel anxious and are not in control of their environment. They can also be very affectionate, charming, sociable and chatty, when they are calm and feel safe. This conflicting and variable presentation of character can be confusing for parents and professionals alike.

Individuals with PDA also have many positive qualities and strengths which can be channelled to capture their interest, reduce anxiety and promote positive engagement and experiences with others, i.e. they are often very creative, imaginative, passionate, determined and enjoy humour.

The behaviour of an individual with PDA can also vary between different people and different settings. E.G. Sometimes a child with PDA can appear very anxious at home but remain relatively passive at school (a learnt coping strategy known as masking). However, this is often at the expense of more complex and challenging behaviour at home, where the child often feels safe to release their pent-up anxiety. In situations like this, parents can be made to feel very inadequate and become isolated.

For other children, the demands at school can lead to severe ‘meltdowns’, within the school environment and this can lead to multiple school exclusions from an early age. Some children can experience such high anxiety in school that they become school refusers.

Sensory differences

Just as in others with ASD, people with PDA can often experience over or under-sensitivity in any, or all, of their senses: sight, smell, taste, touch, vestibular, proprioception or hearing.


Complex and challenging behaviour

A substantial proportion of people with PDA can have real problems controlling and regulating their emotions. As children, this can take the form of violent outbursts as well as less dramatic avoidance strategies like distraction, giving excuses, withdrawal etc. It is essential to see these outbursts as extreme anxiety, which can quickly escalate to a meltdown which should be viewed as a ‘panic attack’ and be treated as such, with reassurance, calming strategies and de-escalation techniques.

 

Some children, as they grow older, may become more self-aware, develop improved social understanding and become more skilled at self-regulating their emotions. This can reduce some of the more challenging behaviour as they mature into their teenage or adult years.


Mental health conditions

Mental health conditions may become a concern for some children with PDA as they grow older and perhaps become more aware of their difficulties and the impact that this has on their life. These may include depression, low self-esteem, self-harm, eating disorders, isolation & withdrawal, obsessive-compulsive disorder (OCD) and other related anxiety disorders.

It is important to seek professional help for individuals with PDA who develop additional mental health conditions, ideally from a professional who is experienced in mental health and the PDA profile of ASD.


What do the experts say about Pathological Demand Avoidance?

Because PDA is not currently included in either of the diagnostic manuals (DSMV and the shortly to be revised ICD10), the validity of this profile of ASD remains a contentious subject among many professionals.

But, following on from the work of Professor Elizabeth Newson in the early 1980’s, PDA continues to gain interest from highly experienced and respected professionals within the field of autism. This growing interest and ongoing research is helping to further increase our understanding of PDA to develop the most appropriate support and interventions.

There is a real coping problem here which has to be recognised. The problem is an incapacity rather than naughtiness. “Being told” cannot solve the problem and nor can sanctions. – Professor Elizabeth Newson, Developmental Psychologist.

PDA is best understood as an anxiety-driven need to be in control and avoid other people’s demands and expectations. – Dr Phil Christie, Consultant Child Psychologist.

PDA is a very real clinical problem…intervention and treatment currently rest almost entirely on guesswork, clinical experience and trial and error. It is one of the most difficult to treat” constellations of problems in the whole of child and adolescent psychiatry. Strategies developed for ASD, ODD and ADHD are often ineffective. – Professor Christopher Gillberg, Professor of Child and Adolescent Psychiatry at the University of Gothenburg and Honorary Professor at University College London.


Assessment and diagnosis

Diagnose Words Magnifying Glass Finding Searching Medical Diagno

PDA is usually identified during a diagnostic assessment for autism. This is usually by a multi-disciplinary team made up of a combination of professionals including: paediatricians, clinical and educational psychologists, psychiatrists, speech and language therapists and occupational therapists.

Many children are not identified until they are older and may already have been diagnosed with a different autism profile. Sometimes parents may feel that this different profile doesn’t quite fit due to the atypical presentation, profile and difficulties that they will be experiencing with their child. More importantly their child may not be benefitting from the standard ASD strategies that this diagnosis has signposted them to.

However, the recognition of PDA and the skills in local teams to make an assessment may vary regionally. But, it should still be possible for whoever you see to give you a detailed profile of your child’s strengths and difficulties which would include, for those whose present with the PDA profile, difficulties associated with acute anxiety levels, intolerance of uncertainty, the need to remain in control of their immediate environment and the extreme avoidance of everyday demands.


Misdiagnosis

Recognition of PDA as a profile within the autism spectrum is fairly recent. It’s usually the surface sociability and the often-vivid imaginations of children with the PDA profile which confuse professionals regarding the diagnosis of ASD.

Therefore, they are particularly vulnerable to being undiagnosed, misdiagnosed or having their difficulties wrongly attributed to a variety of other conditions. that may look similar on the surface, due to diagnostic overlaps, but have a very different route cause. Such as Oppositional Defiant Disorder (ODD), Conduct Disorder (CD), Reactive Attachment Disorder (RAD) and Attention Deficit Hyperactive Disorder (ADHD).

It can also be common for the person’s difficulties to be wrongly blamed on poor and inconsistent parenting which can often leave parents feeling unfairly judged, not listened to and isolated. These parents will need a lot of support themselves, as their children may often present severe behavioural challenges.

It is important to recognise that these children have a hidden disability and often appear ‘normal’ to others. Many parents of children with PDA are accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support, as their children can often present severe behavioural challenges. – Dr Judy Eaton, Consultant Clinical Psychologist.

Misdiagnosis and incorrect assumptions about the underlying cause of the individuals’ difficulties can lead to the wrong understanding and the wrong interventions for individuals with PDA. This can often inflame and compound the situation which can make life for their families increasingly difficult to deal with. These factors further highlight the need for the correct identification of this complex and challenging profile of ASD.


What causes PDA?

The cause of PDA, along with other autism profiles, is still being investigated. Many experts believe that the pattern of strengths and difficulties from which autism is diagnosed may not result from a single cause.  There is strong evidence to suggest that autism can be caused by a variety of physical factors, all of which affect brain development. There is also evidence to suggest that genetic factors are responsible for some forms of autism.

What we do know is that that PDA is not caused by a person’s upbringing or their social circumstances and it is not the fault of the parents or the individual with the condition.


Who is affected by PDA?

The PDA profile is seen in people of both genders and in equal proportions. There are no prevalence rates for PDA yet. As more diagnoses of PDA are made, prevalence figures will become more apparent. PDA affects people from all backgrounds and nationalities.
 


Further reading and information about PDA

If you are concerned that your child may have PDA: Please view our 'Does My Child Have PDA'? area of our website.

Adults with PDA: There is very little research that looks into the adult presentation of ASD with a profile of PDA. Therefore, much of the information below is based on our understanding and knowledge of children with PDA. For further information about how this presentation of ASD can manifest during the adult years please view adult life and our adult case studies.

Further information about PDA can be found in the following areas of our website.

The National Autistic Society also provide an increasing amount of information about PDA.


Please note that the PDA Society are not making any recommendations nor is responsible for the content of sites and links that are external to the PDA Society.

Please contact us if you discover any broken links.