But at the moment I’m flaking out. I’ve just started sharing with Mythusmage Pontificates and I’m supposed to share a few things there. But now my brain has set up a few road blocks, which means I get to crash for awhile to get some rest and see what I can do later. Even small melt downs are a royal bitch.

Pathological Demand Avoidance, PDA

Recently we have been asked by a number of parents if we can assess and diagnose Pathological Demand Avoidance or PDA as its easier to know.  We thought, given the clear rise in the attention it is receiving we should explain what it is and how, or if, it can be assessed and diagnosed.

History and Profile

Dr Elizabeth Newson, a developmental psychologist, focused her work with autism during the 1970’s.  In 1994 she was made a professor of developmental psychology in Nottingham where she used her inaugural lecture to discuss PDA, as a sub type of autism.

PDA can be thought of as a behavioural profile that is sometimes identified with individuals who are being assessed for autism spectrum disorder (ASD).   PDA is not universally accepted, however, which we will explain further on in this post.

PDA is best understood as an anxiety driven need to be in control and avoid other people’s demands and expectations.

Although not everyone will display the same traits, the distinctive features of PDA in children show them to:

Resist and avoid the ordinary demands of life

Use social strategies as part of avoidance, eg distracting, giving excuses

Appear sociable, but lack understanding

Experience excessive mood swings and impulsivity

Appear comfortable in role play and pretence

Display obsessive behaviour that is often focused on other people.   

People with this profile can appear controlling and dominating, especially when they feel anxious. However, when in control they can be charming, relaxed and engage positively with others around them. 

Recently, more children having been assessed for either ASD or ADHD are walking away with labels of PDA, but not all.   It would appear only some experienced clinicians involved in neurodevelopmental are happy to identify and apply the behavioural profile.

Why is PDA not listed in either ICD 10 or DSM V and does it have to be in order for it to be diagnosed?

Answering both these questions will inevitably divide opinion amongst health care professionals, clinicians and readers.

"In 2014 a petition to the UK parliament was created asking for PDA to become a diagnosable condition.  It received only 2,248 votes.  "  -- https://petition.parliament.uk/archived/petitions/57807

Firstly, it is useful for us to explain that PDA is not a clinical condition or disorder that appears in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition or The ICD-10 Classification of Mental and Behavioural Disorders and so cannot be ‘diagnosed’.  

For those who are unaware of either of these concepts:

DSM is what the Americans use to diagnose mental conditions or disorders, its publication is currently in its fifth revision, hence DSM V is commonly heard.

ICD 10, a publication produced by the World Health Organisation (WHO), contains codes for diseases, signs and symptoms, abnormal findings, complaints, social circumstances, and external causes of injury or diseases.  It is used throughout the international community including the UK and most of Europe.  It is different to DSM V in that it covers health as a whole compared to just mental disorders classified by the US.

A study involving Psychiatrists from 66 different countries found that ICD was used more often for Clinical Diagnosis while DSM was used more for research.

To avoid becoming distracted on a completely different topic we shall move on to discussing more about PDA, however please read our post on ICD 10 and DSM V if you would like to know more.

Assessment for PDA

There is no specific PDA assessment process and it is unlikely the NHS in the UK will develop such a specific pathway, instead, opting to refer individuals for an autism diagnostic assessment.  It is usually during this assessment process that PDA can be accurately identified.

Diagnosing children with ASD with PDA as a behavioural profile has been a recent development and not all autism diagnostic teams will be happy to provide parents with both labels. The National Autistic Society has recently made clear their thoughts on PDA becoming a recognised behavioural profile under the autism spectrum and explains the benefits of doing so.

It has been shown to:

Help people with PDA and their families to understand why they experience certain difficulties and what they can do about them

Allow people to access services, support and appropriate advice about strategies

Avoid incorrect assumptions and diagnoses, such as Personality Disorder, Oppositional Defiance Disorder, ADHD, dyslexia or dyspraxia (although a person might have these as well)

Inform local authorities and schools about the importance of providing support and using appropriate PDA strategies and interventions, which differ to those that benefit others on the autism spectrum. This helps to avoid school exclusion. 

As PDA is not officially recognised in either ICD 10 or DSM V it is unlikely to be ‘diagnosed’ as a mental health condition, illness, or anything else.

There has been some movement in developing PDA specific screening tools, namely the ‘Extreme Demand Avoidance Questionnaire’ (EDA-Q).  This questionnaire containing 26 questions is a measure designed to quantify traits of extreme ‘pathological’ demand avoidance (PDA) in children aged 5-17, on the basis of parent or teacher-report.

The validity study of the screening tool involved data from 326 parents and showed potential for its development, however we would recommend that it should not be relied upon as a strong indicator without direct observation of the child and the use of more widely accepted assessment tools more commonly used in autism diagnostics.

NHS Position

Each NHS trust may differ slightly with their position on PDA.  A freedom of information request to NHS Grampion in September 2016 asked several questions relating to PDA, including:

Does NHS Grampian have any specific policy regarding the diagnosis of PDA?

Does NHS Grampian have any policy that would discourage or restrict clinicians from diagnosing conditions not currently described in lCD I0?

Its response:

NHS Grampian can advise that we do not have a specific policy regarding the diagnosis of Pathological Demand Avoidance (PDA). NHS Grampian can advise that we do not have a policy that would discourage or restrict clinicians from diagnosing conditions not currently described in lCD I DSM guidance or other similar documents.

Another FOI request to South Essex NHS in November 2014 asked:

Does your trust have any specific policy regarding the diagnosis of Pathological demand avoidance syndrome? If so, please enclose a relevant copy.

Response:

No

Does your trust have any policy that would discourage or restrict clinicians from diagnosing conditions not described in the ICD, DSM, NICE guidanceor other similar documents? If so please enclose a copy of the relevant policy.

Response:

No

How many children have been diagnosed as having Pathological demand avoidance syndrome by child and adolescent psychiatrists based in Bedfordshire?

Response:

None

Please list all child and adolescent psychiatrists who have diagnosed Pathological demand avoidance syndrome.

Response:

None

Autism and PDA

People with a PDA behaviour profile share difficulties with others on the autism spectrum in social communication, social interaction and restricted and repetitive patterns of behaviours, activities or interests.

It likely that clinicians and healthcare professionals will continue to refer individuals suspected of PDA for an autism diagnostic assessment.  This is the current practice for nearly all NHS trusts that we know of and we would recommend the same for any clinicians practising privately in this field.  It is during this process that PDA is most likely to be identified and if appropriate, provided as a behavioural profile only.

Case Study

Recently within our own practice we diagnosed an adolescent with ASD.  This was following a multi-disciplinary assessment involving a clinical psychologist, forensic psychologist who specialises in autism diagnostics and an educational Psychologist over four, two hour appointments.  Aside from the full clinical interview with the individual and parents, standardised assessments used included:

Autism Diagnostic Interview, revised

Autism Diagnostic Observation Schedule 2

Social Responsiveness Scale 2

Gilliam Autism Rating Scale 3

Full cognitive based assessment using the Wechsler Individual Achievement Test, 2nd addition and the Wechsler Intelligence Scale for Children, 4th addition.

Additional assessment tools which included personality disorder screening.

A diagnosis of ASD was given along with attachment disorder.  It is worth pointing out that the individual had been adopted following abuse within their early childhood.  Detailed recommendations were provided which included the management of ‘melt downs’ and violent outbursts.  Of course this is just a tiny extract of the conclusion in this case following a lengthy assessment process.

What is interesting is that 6 months later we were informed that a further "clear diagnosis" of PDA had been given by another clinician, the result of which had led to a reported improvement with managing the individuals behaviour at home.

Did we miss something?  Speaking with our team they believe not.  In this case based on the time spent with the individual, the detailed clinical interviews and the number of standardised evidenced based assessments (widely used and respected globally) a diagnosis of ASD was correct (and not disputed by the clinician).

Whilst PDA may have been provided by the clinician as a behavioural profile, it was clearly not explained correctly (or the parents misunderstood) as they now believe PDA to be the primary diagnosis and not ASD.

On one hand it could be said that it is not the diagnosis that is important in this case but the management of the individual’s aggressive and disruptive behaviour within the family. If by having a label of PDA this improves the ability to manage the behaviours then maybe we need to engage in further research of PDA and explore how our recommendations may be influenced by applying this label with future clients.

What was clear from the case is that the clinician did not fully explain PDA to the parents and left them confused by thinking they were completely separate disorders.  It may have helped if the clinician had contacted us and asked us to contribute to the additional work being undertaken with the family, we would have been more than happy to provide the detailed notes and raw assessment data that the team recorded.

Conclusion

It would seem, to receive a 'diagnosis' or behavioural profile of PDA, very much depends on the individual clinician on whether they choose to apply a specific label of PDA to an individual or not.

Note I am using the word ‘label’ not ‘diagnosis’

This highlights the risk that in the absence of specific training, evidence based and reliable assessments and a universally accepted condition, individuals could be mislabelled, and even with a label of PDA, many other health care professionals or in the case of children, Local Authority’s, can reject the condition.  This can result in a lack of funded support for those who may, for example require an Education Health and Care Plan (EHCP).

It can also lead to confusion for parents when trying to seek additional support from healthcare providers as there is no clear guidance issued by NICE, the NHS or any other public body on what the recommended support for PDA is.

PDA is not currently recognised as a mental health disorder or illness in the UK and so by having the profile applied, it is unlikely to help individuals apply for additional financial or health care based support. 

It is however, becoming increasingly recognised as a behavioural profile within the neurodevelopmental community and in certain cases may benefit clients by understanding the profile and how to manage it.  While the PDA profile has been found to be relatively uncommon, we would agree that it’s important to recognise and understand the distinct behaviour profile as it may have implications for the way a person is best supported.

Notes for the Editor

The Practice MK is a private multi-disciplinary psychological practice in Milton Keynes that specialises in Autism Spectrum Conditions

The article was produced by Dominic Goodsell, Director and Practice Manager but in collaboration with its Clinical Director, Katherine Goodsell who specialises in Autism. 

The Practice MK has 16 Associates working in the fields of psychology and delivers counselling, therapy, educational and psychological assessments.  It also delivers a specialist trauma clinic and therapetuic adoption and fostering service.

References

Understanding Pathological Demand Avoidance syndrome in children. Christie, Duncan, Fidler & Healey (2011).

Mezzich, Juan E. (2002). "International Surveys on the Use of ICD-10 and Related Diagnostic Systems"

http://www.autism.org.uk/about/what-is/pda.aspx

O’Nions, E., Christie, P., Gould, J., Viding, E. & Happé, F. (2013)