PDA - a guide for autistic adults

Pathological demand avoidance (PDA) is a profile that describes those whose main characteristic is to avoid everyday demands and expectations to an extreme extent. We explain the history of PDA, what a PDA profile is, the assessment process and what current research tells us. We also highlight some personal and professional insights.

History of PDA

Pathological demand avoidance (PDA) was a term first used by Professor Elizabeth Newson in the 1980s, to describe the profile of a group of children she had seen for assessment.

PDA first appeared in a journal article in 2003.

Elizabeth Newson described PDA as sitting under the umbrella of Pervasive Developmental Disorder.
The diagnostic criteria for autism are continually reviewed and developed. Currently the categories of  Pervasive Developmental Disorders are now being replaced by autism spectrum disorders.
Pathological demand avoidance (PDA) is increasingly, but not universally, accepted as a profile that is seen in some autistic people.
The term Extreme Demand Avoidance emerged as an alternative term to Pathological Demand Avoidance as some feel extreme is a more acceptable term than pathological.

What is PDA? 

The existence of PDA as a ‘diagnostic term’ and how it fits within the autism spectrum is widely debated. With limited evidence-based research there is no conclusive and agreed upon definition of PDA. What is generally agreed upon is what is often referred to as a PDA profile. Here we will detail what is meant by this profile.  

People with a PDA profile are driven to avoid everyday demands and expectations to an extreme extent. This demand avoidance is often (but according to some PDA adults, not always) accompanied by high levels of anxiety.

Although there is no prevalence study as yet, the demand avoidant profile is thought to be  relatively uncommon. However, it’s important to recognise and understand this distinct profile as it has implications for the way a person is best supported.

Demand avoidance isn’t just seen in those with a PDA profile so would need to be seen with a number of other features, as described below.

Features of a PDA profile

Autism is dimensional, meaning individual profiles can vary considerably depending on the combination of a person’s strengths and difficulties across two key dimensions:

how someone relates socially
the need for sameness, often resulting in repetitive or rigid thoughts and behaviours.

People with a PDA profile can appear to have better social understanding and communication skills than some other autistic people, and are often able to use this to their advantage. However, these apparent social abilities can often mask difficulty with processing and understanding communication and social situations. 

The distinctive features of a demand avoidant profile include:

resists and avoids the ordinary demands of life
uses social strategies as part of avoidance, for example, distracting, giving excuses
appears sociable, but lacks some understanding
experiences excessive mood swings and impulsivity
appears comfortable in role play and pretence
displays obsessive behaviour that is often focused on other people.

People with this profile can appear excessively controlling and dominating, especially when they feel anxious. However, they can also be confident and engaging when they feel secure and in control. It’s important to acknowledge that these people have a hidden disability.

People with a PDA profile are likely to need a lot of support. The earlier the recognition of PDA, the sooner appropriate support can be put in place.

PDA and assessment

An autism assessment is important as it gives an accurate diagnostic label and identifies what specific support and interventions a person may require. International and American diagnostic manuals do not currently recognise PDA as a separate diagnosis or a subgroup within the autism spectrum. There hasn’t been enough research for PDA to be used as a diagnostic term, but some clinical diagnostic teams do describe it as a profile that they recognise within the autism spectrum. This recognition of need has been found to be helpful when signposting to other professionals for support.

From an autism assessment It should be possible to get a detailed profile of your strengths and needs, regardless of whether or not they recognise the term PDA.

A PDA profile is usually identified following a diagnostic assessment for autism.

To begin the assessment process, ask your GP for a referral to the local adult autism diagnosis service.

Getting a formal diagnosis can mean access to support, but having a specific profile of your strengths and differences is key to getting the right support. With a detailed profile, support can be tailored to all aspects of life – home, leisure, work – and should be regularly reviewed as your needs change over time. As PDA is not currently recognised as a standalone diagnosis, it is even more important that you have a clear description of needs and strengths so that support and strategies meet your needs at that time of life.

What the research says about PDA

The last five years have seen an increase in the number of research papers written about PDA or EDA. However, the research remains extremely limited.  Within the research there is some consensus that: 

the term PDA may be a useful term to flag up a range of co-occurring difficulties for many people, with or without an autism diagnosis
any approach should be personalised to the needs of the individual.

However, there is generally no consensus on: